# data[].attributes.headline
Video Tutorial: A Practical Approach to doing Applied Conversation Analysis (Drs. 

# data[].attributes.subject
Video Tutorial: A Practical Approach to doing Applied Conversation Analysis (Drs. 

# data[].attributes.attachment_link.title
A Practical Approach to doing Applied Conversation Analysis

# data[].attributes.attachment_caption
Clarke, M. T. (2016). Co-construction, asymmetry and multimodality in children’s conversations. J&R Press.

# data[].attributes.headline
Co-Construction, Asymmetry & Multimodality in Children's Conversations

# data[].attributes.subject
Co-Construction, Asymmetry & Multimodality in Children's Conversations

# data[].attributes.attachment_caption
Clarke, M. T., & Wilkinson, R. (2013). Communicative competence in children’s peer interaction. J&R Press.

# data[].attributes.headline
Communicative Competence in Children's Peer Interactions

# data[].attributes.subject
Communicative Competence in Children's Peer Interactions

# data[].attributes.headline
Muskett, T. (2017). Using conversation analysis to assess the language and communication of people on the autism spectrum (A Book Chapter)

# data[].attributes.subject
Muskett, T. (2017). Using conversation analysis to assess the language and communication of people on the autism spectrum (A Book Chapter)

# data[].attributes.attachment_link.title
Muskett 2017_Chapter_Using CA To Assess Autism

# data[].attributes.headline
The Science of Analyzing Conversations, Second by Second

# data[].attributes.subject
The Science of Analyzing Conversations, Second by Second

# data[].attributes.attachment_link.title
The science of analyzing conversations, second by second | Elizabeth Stokoe | TEDxBermuda

# data[].attributes.body
Yu, B., & Sterponi, L. Toward Neurodiversity: How Conversation Analysis Can Contribute to a New Approach to Social Communication Assessment. Language, Speech, and Hearing Services in Schools. https://doi.org/10.1044/2022_LSHSS-22-00041

# data[].attributes.attachment_link.provider_name
Autistic Women & Nonbinary Network (AWN)

# data[].attributes.attachment_link.readable_text
AWN is a 501(c)(3) tax exempt organization with a mission to provide community, support and resources for Autistic women, girls, transfeminine and transmasculine nonbinary and genderqueer people, trans people of all genders, Two Spirit people, and all others of marginalized genders.

# data[].attributes.attachment_link.title
Autistic Women & Nonbinary Network (AWN)

# data[].attributes.attachment_link.description
AWN is a 501(c)(3) tax exempt organization with a mission to provide community, support and resources for Autistic women, girls, transfeminine and transmasculine nonbinary and genderqueer people, trans people of all genders, Two Spirit people, and all others of marginalized genders.

# data[].attributes.headline
Neuroqueer Heresies: The Writings of Dr. Nick Walker (she/her)

# data[].attributes.subject
Neuroqueer Heresies: The Writings of Dr. Nick Walker (she/her)

# data[].attributes.attachment_link.provider_name
NEUROQUEER * THE WRITINGS OF DR. NICK WALKER

# data[].attributes.attachment_link.description
Citable versions of my essays, along with background information and additional commentary, can be found in my book Neuroqueer Heresies. Please note that approximately two-thirds of the material in Neuroqueer Heresies does not appear on this site and is available only in the book. When referencing my work, please remember that my pronouns are she/her.

# data[].attributes.body
https://multimodalityglossary.wordpress.com/conversation-analysis/

Originally focused on the study of spoken interaction, in a growing body of work in Conversation Analysis (CA), video is used to analyze gesture, gaze, posture and other means of communication alongside talk.

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Autistic Self Advocacy Network (ASAN) White Paper on Autism Interventions

# data[].attributes.subject
Autistic Self Advocacy Network (ASAN) White Paper on Autism Interventions

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https://autisticadvocacy.org/policy/briefs/intervention-ethics/
There are many therapies for autism, along with a significant amount of funding for research, development, and implementation of these therapies. However, it often remains unclear whether these therapies actually help autistic people. Autistic people rarely have a voice in creating and shaping these therapies, and there is very little ethical guidance for people who practice autism therapies that accounts for the needs, experiences, and perspectives of autistic people. Autistic people should have the ultimate say in what autism services focus on. ASAN’s white paper,  “For Whose Benefit?: Evidence, Ethics, and Effectiveness of Autism Interventions,” aims to help close this gap.

Always Acceptable Practices to Promote:

1. Trauma-informed approaches

2. Cultural competency & cultural humility

3. Effective & robust method of communication as the first priority

4. Giving the person space & time

5. Encouraging the autistic person to communication in whatever way they need to

6. Include the autistic person as a core member for all goal-setting/planning

7. Presuming competence

8. Minimizing physical contact (asking for consent every time)

9. Distinguishing when an issue is less something for the autistic person to change and more something needs changing in the environment or with other people

10. Figuring out when the issue is something that could be resolved with assistive technology and equipment (e.g., sunglasses for light sensitive folks)

11. Targeting services and supports towards specific life needs (e.g., learning to drive, finding a job, reducing self-harm) and not to treat autistic symptoms

12. Make sure "behavioral issues" are not actually medical issues

13. Provide supports in inclusive settings whenever possible and in settings of the autistic person's choice

14. Rejecting functional labels

15. Acknowledging and encouraging what a person can do, is interested in, and/or is good at

16. Embrace learning on different developmental tracks

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Therapist Neurodiversity Collective is a therapy, education and advocacy international collaborative for licensed SLPs/OTs/PTs and assistants. Our vision is to provide parents, caregivers and clients free access to a worldwide directory of credentialed and licensed pro-neurodiversity-focused therapists. The Therapist Neurodiversity Collective advocates for changes in therapy practices to reflect presuming competence in the people we serve, upholding the human rights of the disabled and respecting communication and sensory differences. The Therapist Neurodiversity Collective actively partners with neurodivergent and disabled people to provide resources, educational opportunities, and continuing education units which reflect our core values, to the public and to therapists and educators.

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Home | Therapist Neurodiversity Collective

# data[].attributes.attachment_link.description
Therapist Neurodiversity Collective is a therapy, education and advocacy international collaborative for licensed SLPs/OTs/PTs and assistants. Our vision is to provide parents, caregivers and clients free access to a worldwide directory of credentialed and licensed pro-neurodiversity-focused therapists.

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The Dilemma of Social Skills Therapy: The Young Child

# data[].attributes.subject
The Dilemma of Social Skills Therapy: The Young Child

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https://dorseyslp.com/blog/the-dilemma-of-social-skills-therapy

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TW: suicide, mental illness

This series is going to make SLPs, related providers, and parents feel uncomfortable. It is incredibly painful to hear that your well-intentioned, compassionate, and dedicated therapy plans targeting pragmatic language are likely hurting the very population you serve. It is uncomfortable to hear criticism from the minority you possibly got into this career to help. However, autistic voices on this matter urgently needs to be listened to and appreciated. And this is not just criticism for criticim's sake-there is an actual solution. Current social skills curriculums are not working-but there are meaningful ways forward to truly help autistic kids navigate, socially. Not just autistic kids, but all kids. In fact, that's the key.

Research is just starting to come out saying what the autistic community has said all along-autistic communication is just as effective as neurotypical communication. The breakdown only occurs when autistics communicate with neurotypicals and vice versa (Crompton, C. J., Fletcher-Watson, S., & Ropar, D., 2019). That being said...

There are the autistic kids who end up in social skills therapy, usually led by an SLP but sometimes a BCBA or school counselor, and there are the autistic kids who don't end up in social skills therapy, or any speech-language therapy at all. The first kids more obviously don't know how to fit in with their peers, may not have friends, or are disruptive in class-the second kids may have some friends, but are the cling-on in groups, and might occasionally be kind of awkward in class, but not enough for it to be problematic for the teacher. The first kids don't really know how to navigate neurotypical social skills without guidance-the second kids are able to observe and study peers, Youtubers, and television shows and movies to find neurotypical patterns of behavior to copy and roughly fit to real-life situations. The first kids are being explicitly taught "masking"-the second kids figure out "masking" on their own. Both types of kids are significantly more likely than their neurotypical peers to grow up to an adulthood suffering from depression, anxiety, and obsessive-compulsive disorder. Both types are significantly more likely to engage in suicidal idealization in adulthood-in fact 35% of autistic adults have planned or attempted suicide. Both types of kids are directly more likely to have these outcomes as adults as a result of prolonged autistic masking (Cassidy, S., Bradley, L., Shaw, R., & Baron-Cohen, S., 2018; Hirvikoski, T., et al., 2016; Nimmo-Smith, V., et al., 2020). These statistics need to be repeated. Again and again. Until something is done.

Autistic masking is the conscious and/or subconscious suppression of autistic traits and tendencies in favor of acting more neurotypical....

My first social memory is being in preschool as a 3-year-old. I had a favorite peer, as many autistic kids do. I remember following her around the class, copying every action she did. I was studying her, imitating her, and hoping, as a result, she would like me. My first social memory is one of me navigating the logistics of successful autistic masking. I somehow knew, from that young age, that hiding my authentic self in favor of imitating my peer would result in more social success. I was 3.

When I was 6 my peers started calling me "short." Objectively, I was a short child. However, I knew that society favored taller people, so I thought that others' telling me I was short was a personal attack about how they viewed me as "lesser," just like society views shorter people as "lesser." Plus, being short made me stick out from my peers, and I was socially aware enough to know that's not good. That's why I gotta copy actions from the people I like. So my classmates would call me short, and I would cry, and I would not be able to stop crying no matter how much I tried. One time a classmate called me short, and my teacher made me and her sit in the corner of the classroom until we could resolve the issue. She sat in silence as I cried and couldn't make it stop. This is one example of my NOT being able to mask my true feelings.

As mentioned previously, some autistic kids don't naturally figure out that they need to suppress their true feelings and copy others to be socially accepted. And so there are entire preschool social skill curriculums for those kids! They learn things like following along to the whole group instead of having fun alone with your own unique idea. Look at the group to see what they are doing! Watch them with your eyes, listen with your ears, keep that mouth silent, turn your body toward that speaker, keep those body parts still or else you'll miss the subtleties of how to act JUST like your peers. Listen to their words. WOW! That's important stuff-way more important than your ideas. Stop talking so much! Let her have a turn going first in the game. I can see you are getting upset, but everybody needs a turn going first. Your brain is getting "stuck" like we talked about yesterday. Don't let it win! Hey, that boy wants to help you build your Lego tower. No, no, he won't mess it up. Oh...the base of the Lego tower isn't very strong now-he is stacking bricks as opposed to alternating the bricks for maximum support. No, no, he didn't ruin it. No, it's fine. Everybody has valid ideas and should be allowed to show them off. Hey! We don't kick our toys when we are mad! It's okay to be mad, but we don't kick. Hey, let's go to another table. You are feeling some very big emotions right now-let's see how big that problem is. See, your reaction is are right here, in the "red zone". Your friend wanted to do build the tower a different way-how big do you think that problem is? Oh, you think it is a big problem, also in the "red zone"? Hm, remember what we talked about last week? Big problems, "red zone" problems, are really really big! Like you are lost and can't find your mom! Uh-huh, yeah, this problem right now is a small problem, in the "green zone." Can you think of some ways to problem solve this problem? No? You want to build the tower by yourself? Aw look, look at your friend's face....he is looking down and frowning...he must feel bad about his idea. Your brain seems pretty "stuck" right now. Don't let it win! Let's brainstorm together all sorts of ways to solve this problem. Why does he now think his idea is bad? What could you say to make him feel better?

Although there is a lot to unpack here, I am going to focus on the aspects that teach autistic children to ignore thoughts and feelings. This is a major part of autistic masking, and clearly, it starts young.

Let's say I was diagnosed as a child, given an IEP, and put in social skills therapy as a 6 year old with this same curriculum. My reaction to being called short would be in the "red zone." And since my peers weren't actually being "mean" to me by calling me short, I'd be told the size of the problem would be in the "green zone." But I still thought my peers were being mean-I interpreted their words as truly being mean and causing intense anxiety and torment, given my knowledge that I need to fit society standards. Now I am being inflexible and rigid, because I truly KNOW that being called short is offensive. Can't let that inflexible brain win, so that will be something to work on. In this social skills therapy, I would have learned that my feelings were wrong. But, hopefully, with time, I would use my brain to see that my emotional reaction does not match the true situation. However, I would say that that my large reaction revealed a perfectly valid, insightful, and, ironically, mature understanding of the world around me. As a child, I couldn't express it verbally. But as an adult, I can say that my reaction revealed an understanding of the unequality and injustice in this world that is all too often ignored and invalidated by adults. Short stature is socially inferior. You adults are telling me it isn't. But the subtle clues society is giving me say otherwise. Not only is it upsetting that people are treated unequally because of things they cannot control, but you adults are turning your backs to it, making it seem like I am the one who doesn't understand the social world!

Similarly, in the hypothetical example above, the child's method of building a Lego tower was clearly structurally superior. Superficially, it appears he is upset because he is inflexible and wanted to just build the tower his way. However, his large reaction is compounded by his frustration that the adults are saying that all ideas are valid when, clearly, his engineering abilities are far superior. And the adults are turning their backs to it! The child shows signs of building anxiety early on and being pushed to include a peer in his project, only for the peer to not do it the right way was enough to make him incredibly upset.

We tell small kids that everybody is equal as far as their worth, which is absolutely true. Given this truth, everybody should be treated equally, always. But others can be treated differently based on their age, gender, race, and appearance. And we can treat others differently based on the situation itself, emotions, sickness, fatigue, etc. Not only is it incredibly confusing, especially for a young child, but it is incredibly unfair. But furthermore, we tell them everybody's ideas are valid and good and valuable. But this isn't true. This isn't true in the real world. Some people have better ideas than others on certain subjects or topics. And some people really struggle more than others with certain subjects and topics. Autistic kids often have an unrelenting sense of honesty, equality, and justice and it is being constantly misinterpreted.

We tell small kids that their feelings are valid. But inflexibility or rigidity seems to exist in this vacuum of being unable to be explained by any neurotypical person, ever. Autistic people are inflexible because they are stuck because they are rigid because they want things a certain way because they can't figure out another way because they don't understand others' perspectives because its in the DSM V. Let me be clear: inflexibility stems from anxiety. What if I mess it up this new way of playing the game? What if this new food makes me gag? I don't know this different route to McDonalds...What if we get lost or get there late? I don't know the buildings and trees and neighborhoods on this route. I am anxious. I feel floaty. Get me out of this car. AH! Meltdown!

Keeping everything the same is the way of controlling a chaotic, logically inconsistent, and sensory overwhelming environment. The potential benefits of the new thing are heavily outweighed by the possibility it will be horrible. It is risk-aversion.

Here are some hypothetical examples outlining how the combination of a strong sense of honesty and equality along with anxiety presenting as inflexibility and rigidity can present as poor social skills in young autistic children. And then common therapeutic attempts at helping the child, socially:

Johnny drew a picture of a car during art time. The teacher has every students' drawing in her hand and shows some to the entire class. Johnny is very proud of his drawing but becomes very upset, pounding his fists and whining, when his teacher doesn't show it to the class. Over time and with his therapist, working to be more "flexible," Johnny sees sometimes his drawing is shown and sometimes it isn't. To his teachers and therapists, it appears he learned that he can't always have a turn. Johnny actually learned to hide the intense disappointment of his drawing not being shown most times, and sometimes he doesn't even want to draw now. Masking.

Bella is playing a turn-taking game with the therapist and a peer. Bella wants to play the game the same exact way each time, but the therapist wants to try a new way because she needs to learn to try new things. Bella insists no because she just got really good at the same way, and changing it causes anxiety due to the executive functioning challenges of learning a new multi-step routine and possibly looking dumb. The game gets changed anyway, and Bella loses the game, causing her to cry and remain silent the rest of the day. Eventually she gets used to hiding the anxiety of a new way of playing games. Masking.

Grace's therapist is working on her turn-taking skills during a conversation. The therapist starts a conversation with a question, "What did you do this weekend, Grace?" and Grace responds with what she did. There is a pause, and the therapist prompts her to ask the same question back. Grace says "I don't really care what you did" and the therapist says that hurts her feelings. Grace is startled by this and asks what her therapist did this weekend but doesn't wait to hear the answer, instead walking away to color in a coloring book. Grace was just being sincere and honest, why would that hurt anybody's feelings (?), and would much rather do her coloring anyway than talk about weekend plans. But the therapist starts working into every session how Grace needs to repeat questions back to the partner, even if she doesn't really care. Masking.

Learning to mask yourself or by being in social skills therapy is reinforcing from the youngest of ages that autistics should follow along with the crowd and push away our thoughts and feelings.

It creates the foundation of a lifetime of inauthenticity and shame around our true selves.

So, then what? The current way things are set up, we either teach the kid how to mask, leading to potentially some social acceptance and school success at the expense of their true sense of identity, or we do nothing, causing the child to be socially rejected and possibly a distraction in class. ﻿

The answer: Completely shifting the framework of what it means to communicate and be "social" , starting at the youngest age possible by discussing neurodiversity and neurotypicality. With ALL kids.

No whole body listening-we each are able to pay attention with different bodily presentations. No using logic to convince ourselves our emotions aren't justified-by learning about our brains, our bodily responses, and what they mean, we learn what we feel and how to regulate. No being stuck vs being flexible-just different ways of interpreting situations, consistent with the ways our different brains work. We need to break the deadly cycle of teaching and encouraging autistic masking.

Got an autistic young child as a client or your own kid? Do they know they are autistic? No? Start there. Got a neurotypical young child as a client or your own kid? Do they know about autism and ADHD and dyslexia? No? Start there.

The Dilemma of Social Skills Therapy Part 2: Adolescence will be next in this blog series. This one will focus on perspective taking and problem-solving as is traditionally taught through social skills therapy.

References:

Cassidy, S., Bradley, L., Shaw, R., & Baron-Cohen, S. (2018). Risk markers for suicidality in autistic adults.

Crompton, C. J., Fletcher-Watson, S., & Ropar, D. (2019). Autistic peer to peer information transfer is highly effective. doi:10.31219/osf.io/j4knx

Nimmo-Smith, V., Heuvelman, H., Dalman, C., Lundberg, M., Idring, S., Carpenter, P., Magnusson, C., & Rai, D. (2020). Anxiety Disorders in Adults with Autism Spectrum Disorder: A Population-Based Study. Journal of autism and developmental disorders, 50(1), 308-318.

Hirvikoski, T., Mittendorfer-Rutz, E., Boman, M., Larsson, H., Lichtenstein, P., & Bölte, S. (2016). Premature mortality in autism spectrum disorder. The British journal of psychiatry: the journal of mental science, 208( 3), 232-238. https://doi.org/10.1192/bjp.bp.114.160192

TW: suicide, mental illness

This series is going to make SLPs, related providers, and parents feel uncomfortable. It is incredibly painful to hear that your well-intentioned, compassionate, and dedicated therapy plans targeting pragmatic language are likely hurting the very population you serve. It is uncomfortable to hear criticism from the minority you possibly got into this career to help. However, autistic voices on this matter urgently needs to be listened to and appreciated. And this is not just criticism for criticim's sake-there is an actual solution. Current social skills curriculums are not working-but there are meaningful ways forward to truly help autistic kids navigate, socially. Not just autistic kids, but all kids. In fact, that's the key.

Research is just starting to come out saying what the autistic community has said all along-autistic communication is just as effective as neurotypical communication. The breakdown only occurs when autistics communicate with neurotypicals and vice versa (Crompton, C. J., Fletcher-Watson, S., & Ropar, D., 2019). That being said...

There are the autistic kids who end up in social skills therapy, usually led by an SLP but sometimes a BCBA or school counselor, and there are the autistic kids who don't end up in social skills therapy, or any speech-language therapy at all. The first kids more obviously don't know how to fit in with their peers, may not have friends, or are disruptive in class-the second kids may have some friends, but are the cling-on in groups, and might occasionally be kind of awkward in class, but not enough for it to be problematic for the teacher. The first kids don't really know how to navigate neurotypical social skills without guidance-the second kids are able to observe and study peers, Youtubers, and television shows and movies to find neurotypical patterns of behavior to copy and roughly fit to real-life situations. The first kids are being explicitly taught "masking"-the second kids figure out "masking" on their own. Both types of kids are significantly more likely than their neurotypical peers to grow up to an adulthood suffering from depression, anxiety, and obsessive-compulsive disorder. Both types are significantly more likely to engage in suicidal idealization in adulthood-in fact 35% of autistic adults have planned or attempted suicide. Both types of kids are directly more likely to have these outcomes as adults as a result of prolonged autistic masking (Cassidy, S., Bradley, L., Shaw, R., & Baron-Cohen, S., 2018; Hirvikoski, T., et al., 2016; Nimmo-Smith, V., et al., 2020). These statistics need to be repeated. Again and again. Until something is done.

Autistic masking is the conscious and/or subconscious suppression of autistic traits and tendencies in favor of acting more neurotypical....

My first social memory is being in preschool as a 3-year-old. I had a favorite peer, as many autistic kids do. I remember following her around the class, copying every action she did. I was studying her, imitating her, and hoping, as a result, she would like me. My first social memory is one of me navigating the logistics of successful autistic masking. I somehow knew, from that young age, that hiding my authentic self in favor of imitating my peer would result in more social success. I was 3.

When I was 6 my peers started calling me "short." Objectively, I was a short child. However, I knew that society favored taller people, so I thought that others' telling me I was short was a personal attack about how they viewed me as "lesser," just like society views shorter people as "lesser." Plus, being short made me stick out from my peers, and I was socially aware enough to know that's not good. That's why I gotta copy actions from the people I like. So my classmates would call me short, and I would cry, and I would not be able to stop crying no matter how much I tried. One time a classmate called me short, and my teacher made me and her sit in the corner of the classroom until we could resolve the issue. She sat in silence as I cried and couldn't make it stop. This is one example of my NOT being able to mask my true feelings.

As mentioned previously, some autistic kids don't naturally figure out that they need to suppress their true feelings and copy others to be socially accepted. And so there are entire preschool social skill curriculums for those kids! They learn things like following along to the whole group instead of having fun alone with your own unique idea. Look at the group to see what they are doing! Watch them with your eyes, listen with your ears, keep that mouth silent, turn your body toward that speaker, keep those body parts still or else you'll miss the subtleties of how to act JUST like your peers. Listen to their words. WOW! That's important stuff-way more important than your ideas. Stop talking so much! Let her have a turn going first in the game. I can see you are getting upset, but everybody needs a turn going first. Your brain is getting "stuck" like we talked about yesterday. Don't let it win! Hey, that boy wants to help you build your Lego tower. No, no, he won't mess it up. Oh...the base of the Lego tower isn't very strong now-he is stacking bricks as opposed to alternating the bricks for maximum support. No, no, he didn't ruin it. No, it's fine. Everybody has valid ideas and should be allowed to show them off. Hey! We don't kick our toys when we are mad! It's okay to be mad, but we don't kick. Hey, let's go to another table. You are feeling some very big emotions right now-let's see how big that problem is. See, your reaction is are right here, in the "red zone". Your friend wanted to do build the tower a different way-how big do you think that problem is? Oh, you think it is a big problem, also in the "red zone"? Hm, remember what we talked about last week? Big problems, "red zone" problems, are really really big! Like you are lost and can't find your mom! Uh-huh, yeah, this problem right now is a small problem, in the "green zone." Can you think of some ways to problem solve this problem? No? You want to build the tower by yourself? Aw look, look at your friend's face....he is looking down and frowning...he must feel bad about his idea. Your brain seems pretty "stuck" right now. Don't let it win! Let's brainstorm together all sorts of ways to solve this problem. Why does he now think his idea is bad? What could you say to make him feel better?

Although there is a lot to unpack here, I am going to focus on the aspects that teach autistic children to ignore thoughts and feelings. This is a major part of autistic masking, and clearly, it starts young.

Let's say I was diagnosed as a child, given an IEP, and put in social skills therapy as a 6 year old with this same curriculum. My reaction to being called short would be in the "red zone." And since my peers weren't actually being "mean" to me by calling me short, I'd be told the size of the problem would be in the "green zone." But I still thought my peers were being mean-I interpreted their words as truly being mean and causing intense anxiety and torment, given my knowledge that I need to fit society standards. Now I am being inflexible and rigid, because I truly KNOW that being called short is offensive. Can't let that inflexible brain win, so that will be something to work on. In this social skills therapy, I would have learned that my feelings were wrong. But, hopefully, with time, I would use my brain to see that my emotional reaction does not match the true situation. However, I would say that that my large reaction revealed a perfectly valid, insightful, and, ironically, mature understanding of the world around me. As a child, I couldn't express it verbally. But as an adult, I can say that my reaction revealed an understanding of the unequality and injustice in this world that is all too often ignored and invalidated by adults. Short stature is socially inferior. You adults are telling me it isn't. But the subtle clues society is giving me say otherwise. Not only is it upsetting that people are treated unequally because of things they cannot control, but you adults are turning your backs to it, making it seem like I am the one who doesn't understand the social world!

Similarly, in the hypothetical example above, the child's method of building a Lego tower was clearly structurally superior. Superficially, it appears he is upset because he is inflexible and wanted to just build the tower his way. However, his large reaction is compounded by his frustration that the adults are saying that all ideas are valid when, clearly, his engineering abilities are far superior. And the adults are turning their backs to it! The child shows signs of building anxiety early on and being pushed to include a peer in his project, only for the peer to not do it the right way was enough to make him incredibly upset.

We tell small kids that everybody is equal as far as their worth, which is absolutely true. Given this truth, everybody should be treated equally, always. But others can be treated differently based on their age, gender, race, and appearance. And we can treat others differently based on the situation itself, emotions, sickness, fatigue, etc. Not only is it incredibly confusing, especially for a young child, but it is incredibly unfair. But furthermore, we tell them everybody's ideas are valid and good and valuable. But this isn't true. This isn't true in the real world. Some people have better ideas than others on certain subjects or topics. And some people really struggle more than others with certain subjects and topics. Autistic kids often have an unrelenting sense of honesty, equality, and justice and it is being constantly misinterpreted.

We tell small kids that their feelings are valid. But inflexibility or rigidity seems to exist in this vacuum of being unable to be explained by any neurotypical person, ever. Autistic people are inflexible because they are stuck because they are rigid because they want things a certain way because they can't figure out another way because they don't understand others' perspectives because its in the DSM V. Let me be clear: inflexibility stems from anxiety. What if I mess it up this new way of playing the game? What if this new food makes me gag? I don't know this different route to McDonalds...What if we get lost or get there late? I don't know the buildings and trees and neighborhoods on this route. I am anxious. I feel floaty. Get me out of this car. AH! Meltdown!

Keeping everything the same is the way of controlling a chaotic, logically inconsistent, and sensory overwhelming environment. The potential benefits of the new thing are heavily outweighed by the possibility it will be horrible. It is risk-aversion.

Here are some hypothetical examples outlining how the combination of a strong sense of honesty and equality along with anxiety presenting as inflexibility and rigidity can present as poor social skills in young autistic children. And then common therapeutic attempts at helping the child, socially:

Johnny drew a picture of a car during art time. The teacher has every students' drawing in her hand and shows some to the entire class. Johnny is very proud of his drawing but becomes very upset, pounding his fists and whining, when his teacher doesn't show it to the class. Over time and with his therapist, working to be more "flexible," Johnny sees sometimes his drawing is shown and sometimes it isn't. To his teachers and therapists, it appears he learned that he can't always have a turn. Johnny actually learned to hide the intense disappointment of his drawing not being shown most times, and sometimes he doesn't even want to draw now. Masking.

Bella is playing a turn-taking game with the therapist and a peer. Bella wants to play the game the same exact way each time, but the therapist wants to try a new way because she needs to learn to try new things. Bella insists no because she just got really good at the same way, and changing it causes anxiety due to the executive functioning challenges of learning a new multi-step routine and possibly looking dumb. The game gets changed anyway, and Bella loses the game, causing her to cry and remain silent the rest of the day. Eventually she gets used to hiding the anxiety of a new way of playing games. Masking.

Grace's therapist is working on her turn-taking skills during a conversation. The therapist starts a conversation with a question, "What did you do this weekend, Grace?" and Grace responds with what she did. There is a pause, and the therapist prompts her to ask the same question back. Grace says "I don't really care what you did" and the therapist says that hurts her feelings. Grace is startled by this and asks what her therapist did this weekend but doesn't wait to hear the answer, instead walking away to color in a coloring book. Grace was just being sincere and honest, why would that hurt anybody's feelings (?), and would much rather do her coloring anyway than talk about weekend plans. But the therapist starts working into every session how Grace needs to repeat questions back to the partner, even if she doesn't really care. Masking.

Learning to mask yourself or by being in social skills therapy is reinforcing from the youngest of ages that autistics should follow along with the crowd and push away our thoughts and feelings.

It creates the foundation of a lifetime of inauthenticity and shame around our true selves.

So, then what? The current way things are set up, we either teach the kid how to mask, leading to potentially some social acceptance and school success at the expense of their true sense of identity, or we do nothing, causing the child to be socially rejected and possibly a distraction in class. ﻿

The answer: Completely shifting the framework of what it means to communicate and be "social" , starting at the youngest age possible by discussing neurodiversity and neurotypicality. With ALL kids.

No whole body listening-we each are able to pay attention with different bodily presentations. No using logic to convince ourselves our emotions aren't justified-by learning about our brains, our bodily responses, and what they mean, we learn what we feel and how to regulate. No being stuck vs being flexible-just different ways of interpreting situations, consistent with the ways our different brains work. We need to break the deadly cycle of teaching and encouraging autistic masking.

Got an autistic young child as a client or your own kid? Do they know they are autistic? No? Start there. Got a neurotypical young child as a client or your own kid? Do they know about autism and ADHD and dyslexia? No? Start there.

The Dilemma of Social Skills Therapy Part 2: Adolescence will be next in this blog series. This one will focus on perspective taking and problem-solving as is traditionally taught through social skills therapy.

References:

Cassidy, S., Bradley, L., Shaw, R., & Baron-Cohen, S. (2018). Risk markers for suicidality in autistic adults.

Crompton, C. J., Fletcher-Watson, S., & Ropar, D. (2019). Autistic peer to peer information transfer is highly effective. doi:10.31219/osf.io/j4knx

Nimmo-Smith, V., Heuvelman, H., Dalman, C., Lundberg, M., Idring, S., Carpenter, P., Magnusson, C., & Rai, D. (2020). Anxiety Disorders in Adults with Autism Spectrum Disorder: A Population-Based Study. Journal of autism and developmental disorders, 50(1), 308-318.

Hirvikoski, T., Mittendorfer-Rutz, E., Boman, M., Larsson, H., Lichtenstein, P., & Bölte, S. (2016). Premature mortality in autism spectrum disorder. The British journal of psychiatry: the journal of mental science, 208( 3), 232-238. https://doi.org/10.1192/bjp.bp.114.160192

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The Dilemma of Social Skills Therapy Part 1: The Young Child - Rachel Dorsey: Autistic SLP, LLC

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TW: suicide, mental illness This series is going to make SLPs, related providers, and parents feel uncomfortable. It is incredibly painful to hear that your well-intentioned, compassionate, and dedicated therapy plans targeting pragmatic language are likely hurting the very population you serve.

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https://autisticadvocacy.org/book/welcome-to-the-autistic-community/
From ASAN:
"This book is about what it means to be a part of the autistic community. Autistic people wrote this book. Some autistic people are just learning about their autism. We wanted to welcome them and give them a lot of important information all in one place."

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Reimagining the Possible for Non-Speaking, Autistic People (60 mins)

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Reimagining the Possible for Non-Speaking, Autistic People (60 mins)

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Hari Srinivasan and David Teplitz both graduates from UC Berkeley this year (2022). This presentation was recorded in 2020.

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University of California Television (UCTV)

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Reimagining the Possible for Non-Speaking, Autistic People

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ASHA Stream Video: Autism Introduction & Discussion on Neurodiversity

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ASHA Stream Video: Autism Introduction & Discussion on Neurodiversity

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This video accompanies a special issue of ASHA Perspectives Journal on autism that has a strong autistic perspective and autism-affirming approaches https://pubs.asha.org/doi/10.1044/persp3.SIG1.56

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Guest Editor Dr. Laura DeThorne (University of Illinois Urbana-Champaign) speaks with Dr. Kelly Searsmith (University of Illinois Urbana-Champaign) about ASHA SIG 1 Perspective’s upcoming part on autism. Please feel free to share your comments below.

Read 2018 SIG 1 Perspectives: https://perspectives.pubs.asha.org/issue.aspx#issueid=936674

Learn more about joining an ASHA Special Interest Group: https://www.asha.org/SIG/Join/

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SIG 1 Perspectives, Part 2: Autism Introduction

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Guest Editor Dr. Laura DeThorne (University of Illinois Urbana-Champaign) speaks with Dr. Kelly...

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This is an Autistic-led group for parents and caregivers of Autistic children to ask questions of Autistic adults.

Parents and caregivers come to this group to hear perspectives, insights and feedback from Autistic members - and as such this group respectfully centres upon Autistic voices. We seek to educate in this group so that current and future generations of Autistic children can be better understood and supported with their needs.

Please ensure you answer all membership questions in order to be considered for acceptance into the group. It is also imperative that you ensure you have read AND thereby AGREE to ADHERE to our Group Rules as per indicated via the final membership question. Note - This group is designed to be interactive with member participation. As such admin will remove inactive members.”

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Autism Inclusivity has 51,928 members. This is an autistic led group for parents and carers of autistic children/teens/adults. We wish to support you and we accept that parents with loved one's who...

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https://thinkingautismguide.com/mission-statement-autism-acceptance
"Thinking Person’s Guide to Autism (TPGA) is the resource we wish we’d had when autism first became part of our lives: a one-stop source for carefully curated, evidence-based, neurodiversity-steeped information from autistic people, parents, and autism professionals."

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Dora Raymaker’s new novel revolves around marginalized folks finding their voice and their place in this world—through magical sci-fi lovely weirdness, but still, they find it!

Retreat isn’t just a quiet room, it is an explicitly neurodivergent space. Nothing about us without us, right? It’s a place to stim freely, drop the mask a little, and find some neurodivergent kinfolk.

If your workplace wants to successfully recruit autistic and neurodivergent job candidates, consider these insider tips on how to make the hiring process easier.

Even though the Son-Rise therapists take credit for Kyle’s successes, maybe he’s done well because of his family’s kindness…in spite of the therapy, not because of it.

Asking for eye contact saps Ira Eidle’s energy. Trust him, he is engaged in a conversation even if he looks distracted.

Autistic author Sarah Kapit is bringing a wide range of authentic autistic characters to her readers.

There are dangers to assuming autistic people need routines, without understanding why. Routines imposed by other people are likely to do more harm than good.

I would really appreciate it if people would listen to me carefully before they start treating me like a child. I am a capable and interesting person, with enough agency, preparation, and knowledge to contribute a lot to my relationship with them.

While we know that the majority of autistic people experience abuse and sexual assault during their lifetimes, autistic women are particularly vulnerable, and we need more research in this area.

I guess there’s not many spaces where I feel safe to be myself without great repercussions. If I’m not dealing with racism, it’s homophobia, and if I’m not dealing with that it’s ableism.

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Autism news and resources: from autistic people, professionals, and parents

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The Dilemma of Social Skills Therapy: Adolescence

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The Dilemma of Social Skills Therapy: Adolescence

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https://dorseyslp.com/blog/the-dilemma-of-social-skills-therapy-pt-2-adolescence

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It is also worth repeating that social cameoflauging causes suicide attempts in autistic people. Not correlated with-causes (Cassidy, S., Bradley, L., Shaw, R., & Baron-Cohen, S., 2018).

First, I am going to outline some examples of adolescent autistic students and their targeted 'social behaviors' to correct, expand upon, eliminate, etc. Then, I am going to switch tracks and dive into the actual issues with social skills therapy for this age range.

1. Peter is a 14 year old autistic kid who frequently raises his hand in history class, blurting out comments and, thus, interrupting the teacher and the class lecture. Sometimes he even corrects the teacher. His classmates find him annoying, and this bleeds into how he is treated in other classes and in lunch. His history teacher has an obvious distaste for him and has spoken to him after class regarding blurting out additional facts and correcting her, telling him these are unacceptable behaviors. But Peter does not seem to let that detract him from continuing. So, as an SLP, you view this pattern and develop a plan. He must not know how he is coming across. If he does know, then he is attention-seeking. You question him on how he thinks his peers think of him when he does these things. What context can help him figure this out? Others' facial expressions? Where they are looking when this happens? Maybe if his peers show obvious signs of liking him like inviting him to group work or talking after class? He says he doesn't have friends in school. You tell him it seems his peers don't really like when he blurts out, and it is not okay to correct the teacher. You suggest that he raises his hand a few times each class, doesn't call out, and stops correcting the teacher-he will then see that peers want to talk to him more and his teacher will respect him more. But now Peter keeps giving excuses. He says the teacher gets stuff wrong. He knows more than the teacher, anyway. He says whatever, this is dumb.

2. Jasmine is a 12 year old autistic kid who, since getting diagnosed with autism and social anxiety at age 10, has been in speech therapy to hopefully gain confidence in social situations She has come a long way from when you first started seeing her. Last year if you asked her a question, like "What's your favorite class?" she would answer "I don't know." But now if you ask her the same question, she responds "Art class" and if you are lucky, she might add in a comment "We painted trees today." This session you ask her about about her friends, Beverly and Sandy, and what they like to do together these days. Jasmine mentions they go shopping and go to Starbucks and just hang out. You respond that you like Starbucks and order a pumpkin spice latte this time of year. She does not say anything, so you prompt her to respond with her favorite drink at Starbucks, so she does, and you praise her for sharing, since that lets you know she is interested in the conversation. You ask if she and her friends have any plans this coming weekend, and Jasmine says "No." Another pause. You prompt her to ask you if you have any weekend plans, which she does, and praise her because that shows that she is interested in you too. You respond that it's your sister's baby shower this weekend! Jasmine asks what that means (independently, YES!), you thank her for asking a question, and you say that your sister is having a baby soon and that a baby shower is a party to celebrate and give the expectant mother gifts. Jasmine responds "ok." You tell her that normally when someone is having a baby, you say "Congratulations" to the expectant mother and the family to show that you are happy for them. She says "Congratulations" and you tell her "Thank you Jasmine!" There is another pause. You prompt her to start saying something, to continue the conversation-its her turn, and she has been doing so great so far! Jasmine says she doesn't know. And oh-the bell rings, session is over. You tell her great job today and smile, and she smiles back and says "Thanks" and smiles on her way to class. She is such a sweet girl. You can't wait to see how she does later this week in her small group session!

3. John is a 16 year old autistic kid who doesn't talk much in school, but when he does, he is kind of a jerk. He sometimes interrupts other kids' conversations by telling them to shut up. His mother reports that at home he needs constant prompts to do his homework and can be really selfish, only thinking about himself. John spends most of his time out of school on the computer. He has been in speech therapy for social skills for several years now and has either slowly met goals or made very little progress. It's his first day of speech therapy for the year, and he sits down, looks away, and doesn't say anything. You, the SLP, ask him if he knows why he is in speech therapy. He doesn't answer. You tell him that by meeting his goals, like not interrupting conversations, respectfully greeting others, and saying respectful comments and questions in conversation, he will be done with speech. He doesn't respond. You ask him how he thinks it makes people feel when he tells others to shut up. He shrugs and says he doesn't care. You tell him that it is very rude to tell others to shut up, and it would just be easier for him to stop-plus, he would be done with speech. He says he doesn't care, and, besides, everybody else is an idiot. Alright, you think, he is aware of the other person's perspective, and he just doesn't care. Hmmmmm, or maybe he doesn't really understand it, and he is saying he doesn't care as a defense mechanism....In any case, this route is going nowhere....So you then ask him about his interests. He lets out a big "uuuuuuugh." After a minute of silence you mention that you know he likes spending time on his computer-what does he like doing on it? John responds "stuff." You decide to let him go back to class and that you will ask colleagues for advice with this one. On his way out, he notices a bowl of Lifesavers you let your students take from, takes two fistfulls, stuffs them in his backpack, and leaves. You think this must be an example of the "selfishness" his mother metioned.

When SLPs do not have a thorough understanding of neurotypical social skills and the factors that translate into successful neurotypical social interactions, therapy plans often appear pretty superficial and rule-based. That's why programs like Social Thinking® by Michelle Garcia Winner are so appealing-they focus on the autistic student thinking about what everybody else is thinking about based on a number of factors and, then, how to respond in a way that aligns with the social situation. At one point, several years ago, I too really liked how it addressed social skill "deficits" by using a cognitive-behavioral therapy approach. By changing your thought process about others and the context, and continuously becoming better at this skill, you can modify your emotional regulatory response and have better social outcomes. Fantastic.

But then I attended counseling. And heard from other autistic adults. And our stories are all the same, like I said in my previous blog post. Our negative emotions come from a lifetime of people pleasing, of studying others and imitating, of first thinking we were viewed one way but then painfully discovering our view of ourselves doesn't match how others view us, of then changing our entire selves to fit each person and each situation, of then crashing, burning, hating ourselves while simultaneously not even knowing who our true selves even are. It is only sustainable for so long. Those of us who for whatever reason did not have social skills therapy in middle or high school learned to do it by ourselves.

So why do autistic people have complete disinterest in socializing and have such shit social skills?

Theory of Mind (ToM)-put simply, knowing that others' thoughts and feelings are different than your own. Also, apparently, the root of all social communication difficulties in the autistic population (Baron-Cohen, Leslie, & Frith, 1985). If autistic people do not have an understanding that people have different thoughts and feelings, surely that would lead to so many autism-related communication breakdowns-selfishness, lack of empathy, stubbornness, inflexibility, rigidity, etc. Aren't lack of ToM-rooted social difficulties in autism exactly what you were taught in graduate school? I sure was.

Pssssst. Except in every study including the original 1985 ToM paper, some autistic people pass. How can be this be? Is ToM task success simply delayed in the autisitc population or are these children passing these tasks using a different mental processing strategy? And other populations fail ToM tasks: children under the age of 3, children with learning disabilities, and children born deaf in non-signing homes. But children in these populations form friendships in a neurotypically expected way, and 2 year olds talk about mental states (Scott & Baillargeon, 2017; Setoh et al., 2016)? Where you taught this in graduate school? No? You were taught ToM deficits are the primary model to explain autism?

It is tempting though, right? To hear this autistic kid go on and on and on and on about motorcycles and blame this behavior on his simply not having ToM. He is self-centered, really thinking his own thoughts are the center of it all. I mean, he doesn't even care that you don't care what he has to say! So now we have ToM being used to explain things way beyond the initial implications of the landmark 1985 paper and subsequent papers on the subject. Well-meaning researchers have created a monster, and this monster has SLPs and related professionals saying that autistic people don't have empathy ("You can't be autistic, Rachel-you are so empathetic!") and are selfish ("He is so sweet, but he only cares about himself."). These scientific findings have some sort of implication, though it is not clear exactly what. But society took them, ran with them, and suddenly autism includes traits of narcissistic and anti-social personality disorder. So as SLPs and related professionals, we gotta help the autistics develop ToM so they can stop saying rude things, monopolizing conversations, and show they care about others.

However, now the research is turning. There is sufficient reason to believe that YOU do not understand that autistic people have their own distinct thoughts and ideas. And these thoughts and ideas are equally valid as neurotypical thoughts and ideas. But because they are different, they lead to communication breakdows between neurotypes. I mean, autistic people are fine communicating with each other-in fact, they prefer it (Crompton, et al., 2020; Granieri, et al., 2020). So, really, what is going on with YOU guys for not being able to communicate well with US?

Oh, is that an accusatory way of looking at things? That it's all the neurotypicals' fault? It must be very hard to hear that your social skills are impacting the way you communicate with autistic people. Perhaps you need some social skills therapy. I am an autistic SLP, and I have appointments available!

But okay, fine, let's say the underlying theory between the communication differences among neurotypes doesn't impact therapy practice all that much. After middle school and high school, there is the real world out there, and autistic teens are going to grow up to be autistic adults in a neurotypical world. So they gotta know how to handle navigating social dynamics of having a job, forming and sustaining relationships, emotional regulation to deal with difficult events, etc. And in the meantime, these kids are interrupting teachers and being rude to peers! Or maybe some of them are pretty sweet kids, but they overshare and make others uncomfortable. Plus, they are so desperate for friends! These autistic kids are frequently the victims of bullying, so we gotta help them not be such outcasts. Or maybe the autistic kids are being bullied, yeah, but, come on, they are egging it on.

Back to the examples of the autistic teens from before. Same kids, similar sequence of events, but now their autistic ideas, thoughts, and feelings are being described instead of just some unknown process attributed to lack of ToM:

1. Peter is a 14 year old autistic kid whose specialized interest is American History. He has been excitedly waiting until this year to not only possibly learn new things, but show his friends and his teacher just how much he already knows! He would never admit this, and might not even realize it himself, but he wants to impress others with his knowledge of his favorite thing. He could talk about it all day if left up to him-and he gets so happy that it's almost euphoric, talking louder and faster, and his heart beats fast, and he subtley flaps his hands, and his body feels tingly. So, of course, when the teacher states a fact, and he knows some additional information, he excitedly wants to share it with the class. In fact, he gets so excitedly wrapped up in the details that he can't even really focus on how his classmates or his teacher react. Sometimes the teacher gets facts wrong though....this is very disappointing to him. I mean, she should be the expert, and experts don't get facts wrong. Each and every fact is super important and has critical implications for the flow of the events that took place in the United States leading until this very point in time. Peter corrects her when she gets things wrong, but one day he got in trouble because he told the truth when she said the wrong thing and for some reason she gets upset when that happens. He was told to stop correcting her and telling the truth in class. So this sucks, and so now American History is the worst. It sucks when the thing you highly anticipate ends up being awful. Peter went from elation at the thought of American History class to nagging, lingering disappointment, and he feels that same exact feeling every time it's time for that class. And then a few days later she pronouned a Sergeant's name wrong. She was wrong. He knows more than she does. His heart is beating fast, he feels tingly again, but also sorta itchy this time-he fidgets in his seat and then shoots his hand up in the air and blurts out "Actually...!" Ok, now this speech lady is asking him all these questions and doing these worksheets about his friends and teacher in history class. This is the worst, and that class is the worst, and this lady is making him talk about if his friends invite him to groupwork or talk after class. No...they don't, but they don't even care if the teacher is wrong, so they don't share the same values as him anyway. Plus, he has his best friend Eric who is 12, and they get along even though Eric is more into European History. Now this speech lady asks him how he thinks the teacher feels when he corrects her. Well, for some reason she is mad, but she should be thankful, because he is helping her, because he knows more than she does! The speech lady tells him that the teacher is mad and embarrassed because the corrections make her look bad to her students. But that's not fair! Peter feels mad when she gets the facts wrong! The speech lady says it is rude to correct teachers-they are authority figures, and it disrupts the flow of the class. But President Trump is an authority figure, and members of the Congress and Senate correct him and disrupt him when they think he is wrong! And Peter's mom has been talking a lot about how journalists get away with "fake news" and how they should only report the truth. That's what he is doing! Whatever, this is dumb.

2. Jasmine is a 12 year old autistic kid who is mostly quiet in school. She hates herself, but sometimes she doesn't. Like when her teacher tells her she did a good job or if someone at school talks to her or asks her a question. This past summer Beverly and Sandy started talking to her because they like some of the same bands. Sometimes they hang out, but only, like, if Beverly and Sandy have asked their other friends. Jasmine has had friends before, but usually they suddenly go from being nice to saying really mean things, like calling her annoying or dumb, and she knows they aren't being sarcastic because their faces look angry and not happy like they do when people are sarcastic. When this happens, Jasmine locks herself in her room and bites her arm and headbangs against her pillow so her parents don't hear. But one day her parents caught her, and now she is on anxiety medication. It helps, sorta, but she still hates herself a lot of times. Last weekend Beverly, Sandy, and Jasmine hung out at Sandy's place-Jasmine doesn't like going to other people's houses much because people's houses all smell different, and sometimes they are dirty and sometimes they are clean. But she agreed to go anyway because they are her friends. They are in Sandy's bedroom, looking at youtube videos, and Sandy shows them a video she says is really funny. The two friends laugh, but Jasmine doesn't really get it but smiles anyway. Beverly exclaims that Jasmine never finds anything funny-she's such buzzkill! But, really, she is just kidding, stop taking everything so seriously, Jasmine! The girls order pizza, but Jasmine gags with melted cheese but doesn't say anything, deciding to take a few bites and swallow through the gags. Sandy mentions a girl a grade below them and calls her a whore. Jasmine is shocked. How could a girl that young, an 11 year old, be a whore? How can she be prostituting herself? It doesn't make sense. Jasmine asks if she is really a whore. Sandy says ooooooh yeah and starts naming some boys in the school that girl has hooked up with. Jasmine then clarifies-wait, ok, so she's not really a whore, like getting paid or whatever. Sandy and Beverly are silent for some time and then tell Jasmine she is so retarted, but they love her and start laughing. Jasmine is confused for a second but decides they aren't laughing at her because they just said they love her. Her eyes start to water but she doesn't understand why, she is having fun with her friends! Jasmine goes to the bathroom and bites her wrist really hard to stop from crying. She is in there for a while, and when she gets out Beverly says she assumed Jasmine was puking her pizza since she is so bulimic-omg, it was totally a joke! Whatever, Jasmine should really take it as a compliment anyway since she is so skinny. Jasmine smiles faintly and says "Thanks" and remembers from speech class that when someone compliments you, you should try to compliment them back, so she says she likes Beverly's hair, even though it's just okay, but she had to say something. That evening her mom picks her up and asks how things went, and Jasmine says good because they were good. And, really, she just needs to stop being so sensitive, god, she hopes they couldn't tell she was gagging through her pizza. And she should have at least tried to laugh at the video because her friends were laughing. She replays these events in her head all night, and then the next morning, and then finds the video online and rewatches it again and again and again and again, probably 10 times, and then she texts Sandy that she watched the video again and finds it funny. Jasmine hopes she doesn't mess up having friends this time.

3. John is a 16 year old autistic kid who every single morning begs his mom not to go to school. He says he doesn't need high school anyway-he is going to just go to tech school when he graduates or whatever. Every day when he gets to school he sees the same groups of students together near the front entrance-the only way to get in because all other doors are always locked. He walks really quickly so they don't see him. Oone time he walked by, and at the exact same time that group of kids was laughing, so it must have been at him. Back in middle school one of the kids, Kyle, spit on him in the hallway, and then John punched him really hard and got suspended. So John walks by this same group of kids, and their talking is so loud and high pitched, and John yells a "SHUT THE FUCK UP" but walks ahead quickly enough to evade any teachers. He then notices his fists are so tight that his nails are digging into his palms, and he is sweaty. Once in class, John pull his hoodie over his head, and the teacher reminds him, yet again, to pull his hoodie down-he always forgets, he didn't even realize he pulled his hoodie head up. The same thing happens again, right before leaving class, because now his teacher is suddenly scolding him, and he realizes his hoodie is up yet again. God, why can't he remember to keep it down? He feels so dumb as he goes to the next class. The hallways are really crowded and loud and he tries to move quickly. This class is math, and he hates math-can't get it all straight-and he knows he is in the "dumb kid math class" and still can't do it. Oh, time for speech. God, so stupid. The speech ladies, year after year-and a different one each year- keep telling him to be respectful. Maybe if he treated others better, they would treat him better. But that's dumb. Back when he did sometimes try to do the things the speech lady said, he still didn't get picked for groupwork. He was still alone during lunch. The speech lady once encouraged him to ask to sit by someone during lunch, which he did, but the other kid sorta mumbled no, he was saving the seat for someone. So speech this year will be no different. This is dumb. Hate this. Hate this. Hate this. Oh-cool-Lifesavers. John takes two fistfulls and puts them in his backpack because he likes sucking on hard candy-better than the strings on his hoodie. Once school ends, and he is home, he heads straight to his computer. He has several internet friends on his favorite online forum. It's easy to talk to them because they all share the same interest. Talking to them through messaging and forums is so nice-time goes by without him realizing it, but then his mom interrupts him by shouting at him to do his homework. Sometimes this results in a meltdown because its nearly impossible to go from meaningful social interaction to focusing on homework. About a year ago when she shouted at him to start his homework he got so upset that he threw his laptop on the ground, breaking it, and then he couldn't talk to his best friends for a few months.

Example #2: Jasmine has no idea of what a healthy friendship means. She also has no idea of what healthy, realistic conversation looks like among friends. Her real life friends say things, and she can't tell if they are making fun of her or not. She has learned in speech that she needs to show interest in the other person, and she can do this by asking questions or sharing something related about herself. However, she doesn't want to be annoying, something she has internalized from past failed friendships. It's hard for her to know exactly what to say at all. Speech therapy conversations bare little resemblence to the conversations of actual people, especially middle school girls. Jasmine likes speech therapy though, because the SLP is really nice and praises her when she keeps conversations going and can think of a question to ask, even though Jasmine doesn't really care about the things they talk about. Jasmine is, unfortunately, learning to people-please. Always pleasing others is an unrealistically high expectation, especially if she can't really gauge when others truly like her. Jasmine replays social situations in her head, studying them, in the hopes of doing better next time. All of these dynamics are setting her up to continue to self-injurious behavior when she, inevitably, does not please the other person.

Example #3: John is the type of kid I commonly see discussed among Facebook Autism Mom and Facebook SLP middle/high school groups. Here is this kid-he doesn't care at all and is making it very clear. People say he is rude, obnoxious, and only cares about himself. But really, John is demonstating a natural and expected response to being bullied and the trauma of being bullied. How long has he been bullied? Likely most of his life, as long as he hasn't really "fit in." He has executive functioning difficulties and can be impulsive, lack initiation, have a singular mindset, and has difficulty shifting attention between tasks. Is he lazy? No. Is he acting like a jerk? Absolutely. He knows it, and he just doesn't care. John is constantly in "fight" mode in school, on high alert, his sensory system extremely dysregulted, and ready to be difficult for the sake of being difficult. Besides, he has friends online, and for autistic people, online friendships are often far deeper than "real life" friendships. He has found a safe haven from an educational sytem that has failed him and labeled him as this obnoxious loser. John doesn't need social skills therapy-he needs to spend time with an adult who isn't constantly trying to change him.

I just described a series of anxious autistic adolescents each receiving social skills therapy. Some therapy focuses on the autistic kid improving perspective taking skills in order to decrease problematic behavior. Some therapy is focused on contributing more to conversations in hopes of gaining friendships and building confidence. Some therapy is focused on looking around for clues and context to help figure out what others think of the autistic person. Some therapy is giving rules to follow for some immediate social success that will hopefully boost confidence.

Each one of the autistic students is experiencing emotional and sensory dysregulation. In fact, often they don't even realize what they are feeling. Or even sense what their bodies are doing. Is there a goal for that?

Each one of these autistic students has some difficulty in understanding the intent of neurotypicals. But each neurotypical they encounter has significant difficulty in understand the intent of the autistic students. Is there a goal that focuses on mutual understanding instead of putting all of the burden on the autistic person?

Some autistic students find social skills irritating and don't really "get" it because they didn't do anything wrong to begin with. Some autistic students embrace neurotypical social skills therapy. They aim to people-please. And some autistic students have lost all hope of being successful, believed in, or liked, or, hell, tolerated at school.

The reason this blog post has taken so long to write is because of the complex nature of the subject and the emotional space it holds. I described three kids with unique challenges. Do I think correcting the teacher and blurting things out in class is ok? No. Nor do I think blatantly disrespecting everyone you contact is ok. That's gotta stop. But unless you truly understand the trauma of being autistic in a neurotypical world, you are just going to cause more trauma in the end. And unless you hold the autistic point of view as equally valid as the neurotypical point of view, you are getting nowhere meaningful and long-lasting with these kids, at least in a positive way. Peter is clearly bright, enthusiastic, eager to share and learn, and that should be fostered. Perhaps he could join debate. Perhaps he could make a list in class of things his teacher got wrong and give it to her at the end of each month-that way, she won't make the same mistakes teaching the class next year. Jasmine is eager to please, clearly, and this can easily be taken advantage of. Perhaps teach how neurotypicals use sarcasm and humor in both positive and negative ways, as she seems to be struggling with that. Perhaps gently empower her to advocate for herself. John is angry, exactly what you'd expect from a kid who feels emotions very deeply and has been an outcast for most of his life, but he might not know he is angry-he just has negative feelings that burst due to his impusivity. Perhaps describe a situation where you impusively made a big mistake out of bad feelings, and describe how your body felt and the emotion it connected with. Perhaps state that you were right to feel angry, and if John feels angry, he is right to feel angry too. Be silent. Then say that you noticed he took a bunch of Lifesavers, and that you are out of cherry flavor which is your favorite, can he check and see if he still has one?

EDIT: Some people have correctly informed me that I have provided good discussion of what NOT to do, but very little of what to actually do. It is hard to specifically advise. A lot of my work with autistic kids is based on shared experience and intuition-I understand a reaction because my reaction would be pretty similar, or there was a time it was pretty similar. I recall emotional memories very strongly, as if I am actually experiencing the exact situation, and this can be extremely helpful when working, but also has the potential to be devastating, emotionally. However, all that being said, there are resources that I use in addition to resources that I think would be helpful to NT SLPs just diving into neurodiversity-aligned practices.
http://autismlevelup.com/
Dr. Amy Laurent and Dr. JÂcqûelyn Fede have created a framework that really dives into many aspects of the autistic experience with a focus on self-advocacy.
https://www.kelly-mahler.com/product-category/online-courses/
Kelly's work on interoception is groundbreaking. I use it for myself frequently. Many autistic people, as well as other people, can't attach bodily sensations to physical needs or emotions-if they can even feel the bodily sensations at all. Imagine trying to regulate when all you feel is some type of vague discomfort but cannot attach it meaningfully to any body part, physical need, or emotion!
https://www.amazon.com/Integrated-Self-Advocacy-ISA-Curriculum-Self-Advocates/dp/1934575402
Self-advocacy, self-advocacy, self-advocacy. Best suited for older kids.

https://therapistndc.org/wp-content/uploads/2020/09/IEP-Make-overs.pdfandhttps://therapistndc.org/wp-content/uploads/2020/09/Part-2-IEP-Make-overs.pdf

The Therapist Neurodiversty collective ( https://therapistndc.org/) has a lot of great resources, but these infographics are goal-specific, for those of you asking about goals.

References
Baron-Cohen, S., Leslie, A. M., & Frith, U. (1985). Does the autistic child have a "theory of mind"?. Cognition, 21(1), 37-46.

Cassidy, S., Bradley, L., Shaw, R., & Baron-Cohen, S. (2018). Risk markers for suicidality in autistic adults.

Crompton, C. J., Ropar, D., Evans-Williams, C. V., Flynn, E. G., & Fletcher-Watson, S. (2019). Autistic peer-to-peer information transfer is highly effective. Autism, 1362361320919286.

Granieri, J. E., McNair, M. L., Gerber, A. H., Reifler, R. F., & Lerner, M. D. (2020). Atypical social communication is associated with positive initial impressions among peers with autism spectrum disorder. Autism, 1362361320924906.

Scott, R. M., & Baillargeon, R. (2017). Early false-belief understanding. Trends in Cognitive Sciences, 21(4), 237-249.

Setoh, P., Scott, R. M., & Baillargeon, R. (2016). Two-and-a-half-year-olds succeed at a traditional false-belief task with reduced processing demands. Proceedings of the National Academy of Sciences, 113(47), 13360-13365.

Winner, M. G. (n.d.). Socialthinking - Social Thinking. Socialthinking.Com. https://www.socialthinking.com

It is also worth repeating that social cameoflauging causes suicide attempts in autistic people. Not correlated with-causes (Cassidy, S., Bradley, L., Shaw, R., & Baron-Cohen, S., 2018).

First, I am going to outline some examples of adolescent autistic students and their targeted 'social behaviors' to correct, expand upon, eliminate, etc. Then, I am going to switch tracks and dive into the actual issues with social skills therapy for this age range.

1. Peter is a 14 year old autistic kid who frequently raises his hand in history class, blurting out comments and, thus, interrupting the teacher and the class lecture. Sometimes he even corrects the teacher. His classmates find him annoying, and this bleeds into how he is treated in other classes and in lunch. His history teacher has an obvious distaste for him and has spoken to him after class regarding blurting out additional facts and correcting her, telling him these are unacceptable behaviors. But Peter does not seem to let that detract him from continuing. So, as an SLP, you view this pattern and develop a plan. He must not know how he is coming across. If he does know, then he is attention-seeking. You question him on how he thinks his peers think of him when he does these things. What context can help him figure this out? Others' facial expressions? Where they are looking when this happens? Maybe if his peers show obvious signs of liking him like inviting him to group work or talking after class? He says he doesn't have friends in school. You tell him it seems his peers don't really like when he blurts out, and it is not okay to correct the teacher. You suggest that he raises his hand a few times each class, doesn't call out, and stops correcting the teacher-he will then see that peers want to talk to him more and his teacher will respect him more. But now Peter keeps giving excuses. He says the teacher gets stuff wrong. He knows more than the teacher, anyway. He says whatever, this is dumb.

2. Jasmine is a 12 year old autistic kid who, since getting diagnosed with autism and social anxiety at age 10, has been in speech therapy to hopefully gain confidence in social situations She has come a long way from when you first started seeing her. Last year if you asked her a question, like "What's your favorite class?" she would answer "I don't know." But now if you ask her the same question, she responds "Art class" and if you are lucky, she might add in a comment "We painted trees today." This session you ask her about about her friends, Beverly and Sandy, and what they like to do together these days. Jasmine mentions they go shopping and go to Starbucks and just hang out. You respond that you like Starbucks and order a pumpkin spice latte this time of year. She does not say anything, so you prompt her to respond with her favorite drink at Starbucks, so she does, and you praise her for sharing, since that lets you know she is interested in the conversation. You ask if she and her friends have any plans this coming weekend, and Jasmine says "No." Another pause. You prompt her to ask you if you have any weekend plans, which she does, and praise her because that shows that she is interested in you too. You respond that it's your sister's baby shower this weekend! Jasmine asks what that means (independently, YES!), you thank her for asking a question, and you say that your sister is having a baby soon and that a baby shower is a party to celebrate and give the expectant mother gifts. Jasmine responds "ok." You tell her that normally when someone is having a baby, you say "Congratulations" to the expectant mother and the family to show that you are happy for them. She says "Congratulations" and you tell her "Thank you Jasmine!" There is another pause. You prompt her to start saying something, to continue the conversation-its her turn, and she has been doing so great so far! Jasmine says she doesn't know. And oh-the bell rings, session is over. You tell her great job today and smile, and she smiles back and says "Thanks" and smiles on her way to class. She is such a sweet girl. You can't wait to see how she does later this week in her small group session!

3. John is a 16 year old autistic kid who doesn't talk much in school, but when he does, he is kind of a jerk. He sometimes interrupts other kids' conversations by telling them to shut up. His mother reports that at home he needs constant prompts to do his homework and can be really selfish, only thinking about himself. John spends most of his time out of school on the computer. He has been in speech therapy for social skills for several years now and has either slowly met goals or made very little progress. It's his first day of speech therapy for the year, and he sits down, looks away, and doesn't say anything. You, the SLP, ask him if he knows why he is in speech therapy. He doesn't answer. You tell him that by meeting his goals, like not interrupting conversations, respectfully greeting others, and saying respectful comments and questions in conversation, he will be done with speech. He doesn't respond. You ask him how he thinks it makes people feel when he tells others to shut up. He shrugs and says he doesn't care. You tell him that it is very rude to tell others to shut up, and it would just be easier for him to stop-plus, he would be done with speech. He says he doesn't care, and, besides, everybody else is an idiot. Alright, you think, he is aware of the other person's perspective, and he just doesn't care. Hmmmmm, or maybe he doesn't really understand it, and he is saying he doesn't care as a defense mechanism....In any case, this route is going nowhere....So you then ask him about his interests. He lets out a big "uuuuuuugh." After a minute of silence you mention that you know he likes spending time on his computer-what does he like doing on it? John responds "stuff." You decide to let him go back to class and that you will ask colleagues for advice with this one. On his way out, he notices a bowl of Lifesavers you let your students take from, takes two fistfulls, stuffs them in his backpack, and leaves. You think this must be an example of the "selfishness" his mother metioned.

When SLPs do not have a thorough understanding of neurotypical social skills and the factors that translate into successful neurotypical social interactions, therapy plans often appear pretty superficial and rule-based. That's why programs like Social Thinking® by Michelle Garcia Winner are so appealing-they focus on the autistic student thinking about what everybody else is thinking about based on a number of factors and, then, how to respond in a way that aligns with the social situation. At one point, several years ago, I too really liked how it addressed social skill "deficits" by using a cognitive-behavioral therapy approach. By changing your thought process about others and the context, and continuously becoming better at this skill, you can modify your emotional regulatory response and have better social outcomes. Fantastic.

But then I attended counseling. And heard from other autistic adults. And our stories are all the same, like I said in my previous blog post. Our negative emotions come from a lifetime of people pleasing, of studying others and imitating, of first thinking we were viewed one way but then painfully discovering our view of ourselves doesn't match how others view us, of then changing our entire selves to fit each person and each situation, of then crashing, burning, hating ourselves while simultaneously not even knowing who our true selves even are. It is only sustainable for so long. Those of us who for whatever reason did not have social skills therapy in middle or high school learned to do it by ourselves.

So why do autistic people have complete disinterest in socializing and have such shit social skills?

Theory of Mind (ToM)-put simply, knowing that others' thoughts and feelings are different than your own. Also, apparently, the root of all social communication difficulties in the autistic population (Baron-Cohen, Leslie, & Frith, 1985). If autistic people do not have an understanding that people have different thoughts and feelings, surely that would lead to so many autism-related communication breakdowns-selfishness, lack of empathy, stubbornness, inflexibility, rigidity, etc. Aren't lack of ToM-rooted social difficulties in autism exactly what you were taught in graduate school? I sure was.

Pssssst. Except in every study including the original 1985 ToM paper, some autistic people pass. How can be this be? Is ToM task success simply delayed in the autisitc population or are these children passing these tasks using a different mental processing strategy? And other populations fail ToM tasks: children under the age of 3, children with learning disabilities, and children born deaf in non-signing homes. But children in these populations form friendships in a neurotypically expected way, and 2 year olds talk about mental states (Scott & Baillargeon, 2017; Setoh et al., 2016)? Where you taught this in graduate school? No? You were taught ToM deficits are the primary model to explain autism?

It is tempting though, right? To hear this autistic kid go on and on and on and on about motorcycles and blame this behavior on his simply not having ToM. He is self-centered, really thinking his own thoughts are the center of it all. I mean, he doesn't even care that you don't care what he has to say! So now we have ToM being used to explain things way beyond the initial implications of the landmark 1985 paper and subsequent papers on the subject. Well-meaning researchers have created a monster, and this monster has SLPs and related professionals saying that autistic people don't have empathy ("You can't be autistic, Rachel-you are so empathetic!") and are selfish ("He is so sweet, but he only cares about himself."). These scientific findings have some sort of implication, though it is not clear exactly what. But society took them, ran with them, and suddenly autism includes traits of narcissistic and anti-social personality disorder. So as SLPs and related professionals, we gotta help the autistics develop ToM so they can stop saying rude things, monopolizing conversations, and show they care about others.

However, now the research is turning. There is sufficient reason to believe that YOU do not understand that autistic people have their own distinct thoughts and ideas. And these thoughts and ideas are equally valid as neurotypical thoughts and ideas. But because they are different, they lead to communication breakdows between neurotypes. I mean, autistic people are fine communicating with each other-in fact, they prefer it (Crompton, et al., 2020; Granieri, et al., 2020). So, really, what is going on with YOU guys for not being able to communicate well with US?

Oh, is that an accusatory way of looking at things? That it's all the neurotypicals' fault? It must be very hard to hear that your social skills are impacting the way you communicate with autistic people. Perhaps you need some social skills therapy. I am an autistic SLP, and I have appointments available!

But okay, fine, let's say the underlying theory between the communication differences among neurotypes doesn't impact therapy practice all that much. After middle school and high school, there is the real world out there, and autistic teens are going to grow up to be autistic adults in a neurotypical world. So they gotta know how to handle navigating social dynamics of having a job, forming and sustaining relationships, emotional regulation to deal with difficult events, etc. And in the meantime, these kids are interrupting teachers and being rude to peers! Or maybe some of them are pretty sweet kids, but they overshare and make others uncomfortable. Plus, they are so desperate for friends! These autistic kids are frequently the victims of bullying, so we gotta help them not be such outcasts. Or maybe the autistic kids are being bullied, yeah, but, come on, they are egging it on.

Back to the examples of the autistic teens from before. Same kids, similar sequence of events, but now their autistic ideas, thoughts, and feelings are being described instead of just some unknown process attributed to lack of ToM:

1. Peter is a 14 year old autistic kid whose specialized interest is American History. He has been excitedly waiting until this year to not only possibly learn new things, but show his friends and his teacher just how much he already knows! He would never admit this, and might not even realize it himself, but he wants to impress others with his knowledge of his favorite thing. He could talk about it all day if left up to him-and he gets so happy that it's almost euphoric, talking louder and faster, and his heart beats fast, and he subtley flaps his hands, and his body feels tingly. So, of course, when the teacher states a fact, and he knows some additional information, he excitedly wants to share it with the class. In fact, he gets so excitedly wrapped up in the details that he can't even really focus on how his classmates or his teacher react. Sometimes the teacher gets facts wrong though....this is very disappointing to him. I mean, she should be the expert, and experts don't get facts wrong. Each and every fact is super important and has critical implications for the flow of the events that took place in the United States leading until this very point in time. Peter corrects her when she gets things wrong, but one day he got in trouble because he told the truth when she said the wrong thing and for some reason she gets upset when that happens. He was told to stop correcting her and telling the truth in class. So this sucks, and so now American History is the worst. It sucks when the thing you highly anticipate ends up being awful. Peter went from elation at the thought of American History class to nagging, lingering disappointment, and he feels that same exact feeling every time it's time for that class. And then a few days later she pronouned a Sergeant's name wrong. She was wrong. He knows more than she does. His heart is beating fast, he feels tingly again, but also sorta itchy this time-he fidgets in his seat and then shoots his hand up in the air and blurts out "Actually...!" Ok, now this speech lady is asking him all these questions and doing these worksheets about his friends and teacher in history class. This is the worst, and that class is the worst, and this lady is making him talk about if his friends invite him to groupwork or talk after class. No...they don't, but they don't even care if the teacher is wrong, so they don't share the same values as him anyway. Plus, he has his best friend Eric who is 12, and they get along even though Eric is more into European History. Now this speech lady asks him how he thinks the teacher feels when he corrects her. Well, for some reason she is mad, but she should be thankful, because he is helping her, because he knows more than she does! The speech lady tells him that the teacher is mad and embarrassed because the corrections make her look bad to her students. But that's not fair! Peter feels mad when she gets the facts wrong! The speech lady says it is rude to correct teachers-they are authority figures, and it disrupts the flow of the class. But President Trump is an authority figure, and members of the Congress and Senate correct him and disrupt him when they think he is wrong! And Peter's mom has been talking a lot about how journalists get away with "fake news" and how they should only report the truth. That's what he is doing! Whatever, this is dumb.

2. Jasmine is a 12 year old autistic kid who is mostly quiet in school. She hates herself, but sometimes she doesn't. Like when her teacher tells her she did a good job or if someone at school talks to her or asks her a question. This past summer Beverly and Sandy started talking to her because they like some of the same bands. Sometimes they hang out, but only, like, if Beverly and Sandy have asked their other friends. Jasmine has had friends before, but usually they suddenly go from being nice to saying really mean things, like calling her annoying or dumb, and she knows they aren't being sarcastic because their faces look angry and not happy like they do when people are sarcastic. When this happens, Jasmine locks herself in her room and bites her arm and headbangs against her pillow so her parents don't hear. But one day her parents caught her, and now she is on anxiety medication. It helps, sorta, but she still hates herself a lot of times. Last weekend Beverly, Sandy, and Jasmine hung out at Sandy's place-Jasmine doesn't like going to other people's houses much because people's houses all smell different, and sometimes they are dirty and sometimes they are clean. But she agreed to go anyway because they are her friends. They are in Sandy's bedroom, looking at youtube videos, and Sandy shows them a video she says is really funny. The two friends laugh, but Jasmine doesn't really get it but smiles anyway. Beverly exclaims that Jasmine never finds anything funny-she's such buzzkill! But, really, she is just kidding, stop taking everything so seriously, Jasmine! The girls order pizza, but Jasmine gags with melted cheese but doesn't say anything, deciding to take a few bites and swallow through the gags. Sandy mentions a girl a grade below them and calls her a whore. Jasmine is shocked. How could a girl that young, an 11 year old, be a whore? How can she be prostituting herself? It doesn't make sense. Jasmine asks if she is really a whore. Sandy says ooooooh yeah and starts naming some boys in the school that girl has hooked up with. Jasmine then clarifies-wait, ok, so she's not really a whore, like getting paid or whatever. Sandy and Beverly are silent for some time and then tell Jasmine she is so retarted, but they love her and start laughing. Jasmine is confused for a second but decides they aren't laughing at her because they just said they love her. Her eyes start to water but she doesn't understand why, she is having fun with her friends! Jasmine goes to the bathroom and bites her wrist really hard to stop from crying. She is in there for a while, and when she gets out Beverly says she assumed Jasmine was puking her pizza since she is so bulimic-omg, it was totally a joke! Whatever, Jasmine should really take it as a compliment anyway since she is so skinny. Jasmine smiles faintly and says "Thanks" and remembers from speech class that when someone compliments you, you should try to compliment them back, so she says she likes Beverly's hair, even though it's just okay, but she had to say something. That evening her mom picks her up and asks how things went, and Jasmine says good because they were good. And, really, she just needs to stop being so sensitive, god, she hopes they couldn't tell she was gagging through her pizza. And she should have at least tried to laugh at the video because her friends were laughing. She replays these events in her head all night, and then the next morning, and then finds the video online and rewatches it again and again and again and again, probably 10 times, and then she texts Sandy that she watched the video again and finds it funny. Jasmine hopes she doesn't mess up having friends this time.

3. John is a 16 year old autistic kid who every single morning begs his mom not to go to school. He says he doesn't need high school anyway-he is going to just go to tech school when he graduates or whatever. Every day when he gets to school he sees the same groups of students together near the front entrance-the only way to get in because all other doors are always locked. He walks really quickly so they don't see him. Oone time he walked by, and at the exact same time that group of kids was laughing, so it must have been at him. Back in middle school one of the kids, Kyle, spit on him in the hallway, and then John punched him really hard and got suspended. So John walks by this same group of kids, and their talking is so loud and high pitched, and John yells a "SHUT THE FUCK UP" but walks ahead quickly enough to evade any teachers. He then notices his fists are so tight that his nails are digging into his palms, and he is sweaty. Once in class, John pull his hoodie over his head, and the teacher reminds him, yet again, to pull his hoodie down-he always forgets, he didn't even realize he pulled his hoodie head up. The same thing happens again, right before leaving class, because now his teacher is suddenly scolding him, and he realizes his hoodie is up yet again. God, why can't he remember to keep it down? He feels so dumb as he goes to the next class. The hallways are really crowded and loud and he tries to move quickly. This class is math, and he hates math-can't get it all straight-and he knows he is in the "dumb kid math class" and still can't do it. Oh, time for speech. God, so stupid. The speech ladies, year after year-and a different one each year- keep telling him to be respectful. Maybe if he treated others better, they would treat him better. But that's dumb. Back when he did sometimes try to do the things the speech lady said, he still didn't get picked for groupwork. He was still alone during lunch. The speech lady once encouraged him to ask to sit by someone during lunch, which he did, but the other kid sorta mumbled no, he was saving the seat for someone. So speech this year will be no different. This is dumb. Hate this. Hate this. Hate this. Oh-cool-Lifesavers. John takes two fistfulls and puts them in his backpack because he likes sucking on hard candy-better than the strings on his hoodie. Once school ends, and he is home, he heads straight to his computer. He has several internet friends on his favorite online forum. It's easy to talk to them because they all share the same interest. Talking to them through messaging and forums is so nice-time goes by without him realizing it, but then his mom interrupts him by shouting at him to do his homework. Sometimes this results in a meltdown because its nearly impossible to go from meaningful social interaction to focusing on homework. About a year ago when she shouted at him to start his homework he got so upset that he threw his laptop on the ground, breaking it, and then he couldn't talk to his best friends for a few months.

Example #2: Jasmine has no idea of what a healthy friendship means. She also has no idea of what healthy, realistic conversation looks like among friends. Her real life friends say things, and she can't tell if they are making fun of her or not. She has learned in speech that she needs to show interest in the other person, and she can do this by asking questions or sharing something related about herself. However, she doesn't want to be annoying, something she has internalized from past failed friendships. It's hard for her to know exactly what to say at all. Speech therapy conversations bare little resemblence to the conversations of actual people, especially middle school girls. Jasmine likes speech therapy though, because the SLP is really nice and praises her when she keeps conversations going and can think of a question to ask, even though Jasmine doesn't really care about the things they talk about. Jasmine is, unfortunately, learning to people-please. Always pleasing others is an unrealistically high expectation, especially if she can't really gauge when others truly like her. Jasmine replays social situations in her head, studying them, in the hopes of doing better next time. All of these dynamics are setting her up to continue to self-injurious behavior when she, inevitably, does not please the other person.

Example #3: John is the type of kid I commonly see discussed among Facebook Autism Mom and Facebook SLP middle/high school groups. Here is this kid-he doesn't care at all and is making it very clear. People say he is rude, obnoxious, and only cares about himself. But really, John is demonstating a natural and expected response to being bullied and the trauma of being bullied. How long has he been bullied? Likely most of his life, as long as he hasn't really "fit in." He has executive functioning difficulties and can be impulsive, lack initiation, have a singular mindset, and has difficulty shifting attention between tasks. Is he lazy? No. Is he acting like a jerk? Absolutely. He knows it, and he just doesn't care. John is constantly in "fight" mode in school, on high alert, his sensory system extremely dysregulted, and ready to be difficult for the sake of being difficult. Besides, he has friends online, and for autistic people, online friendships are often far deeper than "real life" friendships. He has found a safe haven from an educational sytem that has failed him and labeled him as this obnoxious loser. John doesn't need social skills therapy-he needs to spend time with an adult who isn't constantly trying to change him.

I just described a series of anxious autistic adolescents each receiving social skills therapy. Some therapy focuses on the autistic kid improving perspective taking skills in order to decrease problematic behavior. Some therapy is focused on contributing more to conversations in hopes of gaining friendships and building confidence. Some therapy is focused on looking around for clues and context to help figure out what others think of the autistic person. Some therapy is giving rules to follow for some immediate social success that will hopefully boost confidence.

Each one of the autistic students is experiencing emotional and sensory dysregulation. In fact, often they don't even realize what they are feeling. Or even sense what their bodies are doing. Is there a goal for that?

Each one of these autistic students has some difficulty in understanding the intent of neurotypicals. But each neurotypical they encounter has significant difficulty in understand the intent of the autistic students. Is there a goal that focuses on mutual understanding instead of putting all of the burden on the autistic person?

Some autistic students find social skills irritating and don't really "get" it because they didn't do anything wrong to begin with. Some autistic students embrace neurotypical social skills therapy. They aim to people-please. And some autistic students have lost all hope of being successful, believed in, or liked, or, hell, tolerated at school.

The reason this blog post has taken so long to write is because of the complex nature of the subject and the emotional space it holds. I described three kids with unique challenges. Do I think correcting the teacher and blurting things out in class is ok? No. Nor do I think blatantly disrespecting everyone you contact is ok. That's gotta stop. But unless you truly understand the trauma of being autistic in a neurotypical world, you are just going to cause more trauma in the end. And unless you hold the autistic point of view as equally valid as the neurotypical point of view, you are getting nowhere meaningful and long-lasting with these kids, at least in a positive way. Peter is clearly bright, enthusiastic, eager to share and learn, and that should be fostered. Perhaps he could join debate. Perhaps he could make a list in class of things his teacher got wrong and give it to her at the end of each month-that way, she won't make the same mistakes teaching the class next year. Jasmine is eager to please, clearly, and this can easily be taken advantage of. Perhaps teach how neurotypicals use sarcasm and humor in both positive and negative ways, as she seems to be struggling with that. Perhaps gently empower her to advocate for herself. John is angry, exactly what you'd expect from a kid who feels emotions very deeply and has been an outcast for most of his life, but he might not know he is angry-he just has negative feelings that burst due to his impusivity. Perhaps describe a situation where you impusively made a big mistake out of bad feelings, and describe how your body felt and the emotion it connected with. Perhaps state that you were right to feel angry, and if John feels angry, he is right to feel angry too. Be silent. Then say that you noticed he took a bunch of Lifesavers, and that you are out of cherry flavor which is your favorite, can he check and see if he still has one?

EDIT: Some people have correctly informed me that I have provided good discussion of what NOT to do, but very little of what to actually do. It is hard to specifically advise. A lot of my work with autistic kids is based on shared experience and intuition-I understand a reaction because my reaction would be pretty similar, or there was a time it was pretty similar. I recall emotional memories very strongly, as if I am actually experiencing the exact situation, and this can be extremely helpful when working, but also has the potential to be devastating, emotionally. However, all that being said, there are resources that I use in addition to resources that I think would be helpful to NT SLPs just diving into neurodiversity-aligned practices.
http://autismlevelup.com/
Dr. Amy Laurent and Dr. JÂcqûelyn Fede have created a framework that really dives into many aspects of the autistic experience with a focus on self-advocacy.
https://www.kelly-mahler.com/product-category/online-courses/
Kelly's work on interoception is groundbreaking. I use it for myself frequently. Many autistic people, as well as other people, can't attach bodily sensations to physical needs or emotions-if they can even feel the bodily sensations at all. Imagine trying to regulate when all you feel is some type of vague discomfort but cannot attach it meaningfully to any body part, physical need, or emotion!
https://www.amazon.com/Integrated-Self-Advocacy-ISA-Curriculum-Self-Advocates/dp/1934575402
Self-advocacy, self-advocacy, self-advocacy. Best suited for older kids.

https://therapistndc.org/wp-content/uploads/2020/09/IEP-Make-overs.pdfandhttps://therapistndc.org/wp-content/uploads/2020/09/Part-2-IEP-Make-overs.pdf

The Therapist Neurodiversty collective ( https://therapistndc.org/) has a lot of great resources, but these infographics are goal-specific, for those of you asking about goals.

References
Baron-Cohen, S., Leslie, A. M., & Frith, U. (1985). Does the autistic child have a "theory of mind"?. Cognition, 21(1), 37-46.

Cassidy, S., Bradley, L., Shaw, R., & Baron-Cohen, S. (2018). Risk markers for suicidality in autistic adults.

Crompton, C. J., Ropar, D., Evans-Williams, C. V., Flynn, E. G., & Fletcher-Watson, S. (2019). Autistic peer-to-peer information transfer is highly effective. Autism, 1362361320919286.

Granieri, J. E., McNair, M. L., Gerber, A. H., Reifler, R. F., & Lerner, M. D. (2020). Atypical social communication is associated with positive initial impressions among peers with autism spectrum disorder. Autism, 1362361320924906.

Scott, R. M., & Baillargeon, R. (2017). Early false-belief understanding. Trends in Cognitive Sciences, 21(4), 237-249.

Setoh, P., Scott, R. M., & Baillargeon, R. (2016). Two-and-a-half-year-olds succeed at a traditional false-belief task with reduced processing demands. Proceedings of the National Academy of Sciences, 113(47), 13360-13365.

Winner, M. G. (n.d.). Socialthinking - Social Thinking. Socialthinking.Com. https://www.socialthinking.com

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The Dilemma of Social Skills Therapy Part 2: Adolescence - Rachel Dorsey: Autistic SLP, LLC

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It is also worth repeating that social cameoflauging causes suicide attempts in autistic people. Not correlated with-causes (Cassidy, S., Bradley, L., Shaw, R., & Baron-Cohen, S., 2018). First, I am going to outline some examples of adolescent autistic students and their targeted 'social behaviors' to correct, expand upon, eliminate, etc.

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Start Here: A Guide for Parents of Autistic Kids

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Start Here: A Guide for Parents of Autistic Kids

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https://autisticadvocacy.org/book/start-here/
Too often, when parents find out their kid is autistic, they receive negative messages from all sides. Many resources available to parents stigmatize autism and talk about it as something to be “overcome,” not as a part of who an autistic child is. At ASAN, we’ve heard from many parents of autisic children who wish they’d had a better resource to learn about autism — one that cuts through myths and misconceptions and explains autism from an autistic perspective. And we’ve heard from many of our autistic community members who wish their families had access to that kind of information when they were growing up. That’s what our new booklet, “Start Here: A Guide for Parents of Autistic Kids” is for! This booklet was created with the Autistic Women and Nonbinary Network, the Thinking Person’s Guide to Autism, and Little Lobbyists.

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Autistic Community and the Neurodiversity Movement: Stories from the Frontline

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Autistic Community and the Neurodiversity Movement: Stories from the Frontline

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https://link.springer.com/book/10.1007/978-981-13-8437-0
The first book to bring together a large collection of neurodiverse contributors to talk about events that shaped the movement, and which they themselves were involved with. Focuses on activists’ direct experience effecting change for people who identify as autistic rather than abstract accounts that reflect on autism’s social construction or essence.

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Therapist Neurodiversity Collective is a therapy, education and advocacy international collaborative for licensed SLPs/OTs/PTs and assistants. Our vision is to provide parents, caregivers and clients free access to a worldwide directory of credentialed and licensed pro-neurodiversity-focused therapists. The Therapist Neurodiversity Collective advocates for changes in therapy practices to reflect presuming competence in the people we serve, upholding the human rights of the disabled and respecting communication and sensory differences. The Therapist Neurodiversity Collective actively partners with neurodivergent and disabled people to provide resources, educational opportunities, and continuing education units which reflect our core values, to the public and to therapists and educators.

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Home | Therapist Neurodiversity Collective

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Therapist Neurodiversity Collective is a therapy, education and advocacy international collaborative for licensed SLPs/OTs/PTs and assistants. Our vision is to provide parents, caregivers and clients free access to a worldwide directory of credentialed and licensed pro-neurodiversity-focused therapists.

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Autism Aspergers Spectrum Coalition for Education Networking and Development

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Autism Aspergers Spectrum Coalition for Education Networking and Development

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AASCEND is a 501(c)(3) nonprofit organization in San Francisco. "Adults of all ages on the autism spectrum, their families and friends, academics and professionals in the autism field unite as a community in AASCEND. Our members sit down at the table as peers to support one another and work together to achieve AASCEND’S goals of Education, Networking and Development."

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AASCEND is a 501(c)(3) nonprofit organization designated a private charity by the Internal Revenue Service, with Employer Identification Number 94-3378338.

Unites

Adults of all ages on the autism spectrum, their families and friends, academics and professionals in the autism field unite as a community in AASCEND. Our members sit down at the table as peers to support one another and work together to achieve AASCEND'S goals of Education, Networking and Development.

Promotes Self-understanding

Autism's core challenges can be profound. AASCEND members explore the world of autism through group discussions, guest speakers, films and book selections.

Offers Support

For the past ten years AASCEND members have been meeting monthly to share information resources, support one another emotionally, and in the process learn to appreciate the view points of others. Our group is intergenerational and comes from all walks of life.

"We'll fall through the cracks no more!"
48-year-old AASCEND member

Raises Public Awareness

AASCEND is getting the word out about our community. AASCEND reaches out through regular meetings, a web page designed by our members, media presentations and educational conferences. It educates the greater community about living with Asperger's Syndrome (AS) and High Functioning Autism (HFA).

"For the first time, I'm really beginning
to understand how to help my AS
and HFA students. Thank you"
San Francisco Elementary School Teacher

Educates Professionals

While general public awareness is the heart of the matter, professionals often need a great deal more help in understanding AS and HFA. Many of those now in the service area are products of an era of training that did not include information about the autism spectrum. AASCEND advocates for its members.

"After participating in an AASCEND conference
and talking to the members, I can better
serve my clients with AS and HFA."
Department of Rehabilitation Counselor

Collaborates

AASCEND works with local, national and global organizations to further understanding, support and action for our community. AASCEND hosted the fi rst international conference of groups run by adults on the autism spectrum.

Recognizes Leadership

AASCEND presents annual awards in the areas of Education, Networking and Development to individuals and groups who further the cause of our community.

Initiates

AASCEND supports initiatives such as Conquering Heights that dramatically illustrate the abilities of people on the spectrum. AASCEND awards scholarships so members may attend national conferences.

Sponsors Social Events

We host an annual brunch, a picnic and holiday parties so all of us can relax and have fun!

"This is the first time in my life I've
been able to sit down with groups of
people who really understand us."
AASCEND parent

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AASCEND is a 501(c)(3) nonprofit organization designated a private charity by the Internal Revenue Service, with Employer Identification Number 94-3378338.

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https://autisticadvocacy.org/about-asan/
The Autistic Self Advocacy Network is a 501(c)(3) nonprofit organization run by and for autistic people. Our members and supporters include autistic adults and youth, cross-disability advocates, and non-autistic family members, professionals, educators, and friends.

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Our Mission

The Autistic Self Advocacy Network seeks to advance the principles of the disability rights movement with regard to autism. ASAN believes that the goal of autism advocacy should be a world in which autistic people enjoy equal access, rights, and opportunities. We work to empower autistic people across the world to take control of our own lives and the future of our common community, and seek to organize the autistic community to ensure our voices are heard in the national conversation about us. Nothing About Us, Without Us!

Who We Are

The Autistic Self Advocacy Network is a 501(c)(3) nonprofit organization run by and for autistic people. ASAN was created to serve as a national grassroots disability rights organization for the autistic community, advocating for systems change and ensuring that the voices of autistic people are heard in policy debates and the halls of power. Our staff work to advance civil rights, support self-advocacy in all its forms, and improve public perceptions of autism. ASAN's members and supporters include autistic adults and youth, cross-disability advocates, and non-autistic family members, professionals, educators, and friends.

What We Do

Our activities include public policy advocacy, the development of autistic cultural activities, and leadership trainings for autistic self-advocates. We provide information about autism, disability rights, and systems change to the public through a number of different educational, cultural, and advocacy related projects.
Click here to read about what we accomplished in 2020.
Position Statements

ASAN advocates specific policy positions on issues of importance to autistic people and others with disabilities. In so doing, we seek to ensure the meaningful involvement of autistic individuals in making policy at all levels, to promote a culture of inclusion and respect for all, to enforce the rights of autistic people to equal opportunity at school and at work, and to improve funding for community services and supports along with research into how they can best be provided.

Read our position statements here.
Read our Civil Rights are Disability Rights statement here.
Publications

ASAN's publications are available through this website and include books on self-advocacy, Autistic culture, and related topics, as well as reports and brief materials. Our reports and policy briefs discuss social issues of importance to the Autistic and disability communities, such as access to services and community living, while our books share self-advocate perspectives on a variety of issues and experiences.

Speaking and Consulting

Our speakers can customize their presentations to meet the specific needs of different audiences, including schools, businesses, and other groups. In addition, we provide consulting services to assist companies and agencies with including Autistic individuals in diversity employment programs and providing workplace accommodations. Contact info@autisticadvocacy.org for more information.

Corporate Information

ASAN was incorporated as a New Jersey nonprofit organization in November 2006 and was an all-volunteer group for the next four years. In January 2011, our application for 501(c)(3) tax-exempt status was approved, and we began receiving grants and hiring staff. Our national office is located in Washington DC.

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Our Mission The Autistic Self Advocacy Network seeks to advance the principles of the disability rights movement with regard to autism. ASAN believes that the goal of autism advocacy should be a world in which autistic people enjoy equal access, rights, and opportunities. We work to empower autisti

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Fiction and nonfiction books published by actually autistic authors -- not allistic parents, teachers, doctors, caregivers, etc. of autistic people. Books in this list do not have to be about autism, but they MUST be by autistic authors.

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Fiction and nonfiction books published by actually autistic authors -- not allistic parents, teachers, doctors, caregivers, etc. of autistic people. Books in this list do not have to be about autism, but they MUST be by autistic authors.

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Fiction and nonfiction books published by actually autistic authors -- not allistic parents, teachers, doctors, caregivers, etc. of autistic people. Books in this list do not have to be about autism, but they MUST be by autistic authors.

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Rethinking Support for Autistic Individuals

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Rethinking Support for Autistic Individuals

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https://youtu.be/fx3cfzlCG_Q

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Letting Go of Control and Rethinking Support for Autistic Individuals | Amy Laurent | TEDxURI

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Stimming, therapeutic for autistic people, deserves acceptance

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Stimming, therapeutic for autistic people, deserves acceptance

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Rhythmic, repetitive behaviors are a hallmark of autism. Hand-flapping, spinning in circles, body rocking, vocalizations such as grunting and muttering, and other habits can be disquieting to people unfamiliar with them. Scientists and clinicians have long puzzled over what these behaviors mean - and how to respond to them.

For many years, experts thought repetitive movements resulted from deprivation or even trauma, and that they hindered learning. Psychologist Ole Ivar Lovaas, an early autism specialist, reportedly referred to them as "garbage behavior." He made suppressing these habits a priority. Lovaas and his followers electrically shocked, screamed at, shook and slapped autistic children. Others prescribed antipsychotics and other stupefying drugs. Even in today's sometimes gentler treatment paradigms, therapists often train children to have 'quiet hands' as opposed to freely flapping ones.

But growing evidence suggests that repetitive behaviors have been misunderstood - and that they may in fact be incredibly useful. My colleagues and I have found that the behaviors give autistic people a sense of control, helping them cope with overwhelming external stimuli, and a way to calm and communicate their moods. On the other hand, many autistic people say that engaging in repetitive behaviors makes them feel like social outcasts.

Autistic adults have defended their right to these behaviors. Reclaiming the technical term 'self-stimulatory behaviors' as 'stimming,' they have self-published blogs, vlogs (video logs) and books that reveal how it helps them cope. Society needs to take their lead and accept these behaviors by understanding their benefits.

Theoretical debates swirl about why autistic people stim, with many experts believing the behaviors are purposeless. In a study published earlier this year, my colleagues and I interviewed 31 autistic adults about their stimming behaviors. Ours was the first peer-reviewed article I'm aware of to gather in-depth data about stimming directly from autistic people.

One of our most noteworthy findings is that although many participants said their stims are automatic and uncontrollable, none consistently dislike them. Most people described the behaviors as calming, and no one contradicted this account for stims that do not cause injury.

Another key finding is that stims are a response to either sensory overload (such as a noisy room) or overpowering thoughts (such as anxiety about work). Whether the source is the outside world or a person's mind, the result is a state we called 'uncontainable emotion.' Autistic people can be overwhelmed by sensations, new information and their own thoughts. Study participants told us that stimming soothes these intense feelings, helping them regain a sense of control.

"It sort of metronomes everything in your body to sort of go at that speed," a male participant said, "so it just sort of helps quell everything."

Stimming also sometimes serves as a way for people to communicate their moods. Participants said they sometimes stim out of joy or excitement and other times out of anxiety or boredom, but that the emotion colors the behavior. For example, hand-flapping that reflects a positive emotional state often involves holding the arms out and making a waving motion, whereas in hand-flapping due to distress, autistic people tend to keep their hands and arms near the torso.

Participants reported that some insightful family members and close friends knew how to "read" their emotions by observing the nuances of their stim behaviors. It is evident that such understanding holds the key to social acceptance of stimming.

Breaking the rules:

Finally, most participants described encountering social judgment and rejection because of their stimming. Many regularly felt like social outcasts and thought they were perceived as weird or immature.

In response to rejection, participants concealed their stims (for instance, under a desk), transmuted them (for example, replacing hand-flapping with activities such as tennis and chess that engage the hands and arms) and suppressed them (stimming only when alone or around accepting people).

One of our study participants recalled that as a child she loved to spin and swing but later realized that these behaviors are unacceptable. "It actually still feels glorious if there's nobody around and I can skip, or I can spin, and it's like I'm breaking the rules," she says.

Suppressing stims is far from beneficial, our study showed. The effort takes a lot of energy and makes people feel, in the words of another female participant, "more on edge." Educators have often considered stims a distraction, but many autistic people say the opposite is true. Stims are the equivalent of doodling, they say, freeing the mind to concentrate on other things.

Nevertheless, therapeutic attempts to eliminate stimming remain common. The approach is misguided because it strips people of a key means of coping. One caveat: Some forms of stimming, such as head-banging, are harmful and do warrant sensitive, consensual treatment. No participant wanted to engage in self-injurious stims, which were involuntary.

I hope that greater awareness of autistic people's experiences with stimming makes repetitive behaviors such as finger-flicking or squealing more accepted - not just in classrooms but in supermarkets, movie theaters and all public places.

The neurodiversity movement, which celebrates autism both as a way of being and a disability to accept and support, has embraced stimming. "Loud hands" is the defiant rallying cry. Stimming resources include Stimtastic, which sells stim toys and chewable jewelry, and Stim Your Heart Out, a dance project that encourages stimming in mainstream society.

The way to help autistic people is not to discourage stimming but to address certain reasons they stim: sensory overload or distress. Our participants mentioned several environmental modifications, including earplugs and rimmed hats to reduce sensory input, settings that meet autistic people's needs or schedules that include breaks. Anecdotal evidence suggests that when stimming is not enough to relieve stress, autistic people might welcome calming medications or training in emotional self-regulation.

Preliminary research I've done suggests that there are commonalities between stimming and the 'fidgeting' that neurotypical people do. The bottom line may be that everyone stims, in one form or another. Recognizing that fact might aid acceptance.
Steven Kapp is research fellow in autism and neurodiversity at the University of Exeter in the United Kingdom.

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Stimming, therapeutic for autistic people, deserves acceptance

# data[].attributes.attachment_link.description
Rhythmic, repetitive behaviors are a hallmark of autism. Hand-flapping, spinning in circles, body rocking, vocalizations such as grunting and muttering, and other habits can be disquieting to people unfamiliar with them. Scientists and clinicians have long puzzled over what these behaviors mean - and how to respond to them.

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https://autisticadvocacy.org/about-asan/identity-first-language/

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Identity-First Language - Autistic Self Advocacy Network

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ASAN intern Lydia Brown originally published this article on their blog Autistic Hoya under the title The Significance of Semantics: Person-First Language: Why It Matters. At the Adult Services Subcommittee’s final meeting last Wednesday, much to do was made about semantic disagreements -- “ASD indi…

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https://neuroclastic.com/about/

"We are a collective of Autistic people responsive to the evolving needs and trajectory of the Autistic community.

By publishing autistic voices, we are cataloguing the intersectional experiences, insights, knowledge, talents, and creative pursuits of Autistics. We follow a unique model of interdependence, leveraging the passions, skills, and specializations of contributors to create a living repository of information cataloging the autistic experience."

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This article by Annie Kotowicz of Neurobeautiful explores Brontë's Jane Eyre as autistic. By interpreting Jane as an autistic character, readers can gain insight into the complex thinking that drives autistic actions.

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This article by Annie Kotowicz of Neurobeautiful explores Brontë's Jane Eyre as autistic. By interpreting Jane as an autistic character, readers can gain insight into the complex thinking that drives autistic actions.

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Recorded Archives from the "Understanding Autism through the Actually Autistic Lens" Conference at Penn State.

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Recorded Archives from the "Understanding Autism through the Actually Autistic Lens" Conference at Penn State.

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This is a unique event, specifically designed, developed, and facilitated by autistic speakers. You will have the opportunity to hear from experts and advocates through the lens of #actuallyautistic adults.

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Livestream Technical Tips

Live Stream

This is a unique event, specifically designed, developed, and facilitated by autistic speakers. You will have the opportunity to hear from experts and advocates through the lens of #actuallyautistic adults.

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Understanding Autism through the Actually Autistic Lens

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Livestream Technical Tips Live Stream This is a unique event, specifically designed, developed, and facilitated by autistic speakers. You will have the opportunity to hear from experts and advocates through the lens of #actuallyautistic adults.

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Social Stories for Autism (Can be helpful or harmful)

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Social Stories for Autism (Can be helpful or harmful)

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https://neuroclastic.com/2020/12/04/social-stories-for-autism/

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Social Stories for Autism and the Harm They Can Cause

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Social stories should be for the whole class, because that is what inclusion means. They should focus on the values that drive cooperation and embrace difference. Social stories should encourage inclusion, and that means trying to find ways to include everyone and addressing those most likely to create a culture of exclusion.

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Echolalia & Scripting in Autism (Neurodiverging Podcast & Blog Post)

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Echolalia & Scripting in Autism (Neurodiverging Podcast & Blog Post)

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Do you have an autistic friend or loved one who repeats everything you say all the time? Or do you know someone with autism spectrum disorder who's in the habit of talking to themselves?

Most repetition is a result of echolalia and scripting, and both are common among young children and autistics of all ages. Why do we repeat? Find out what's going on from an autistic parent's point of view.

Transcript: Echolalia and Scripting in Autism: Why We Autistics Repeat

(Thank you to Justice Ross for their beautiful transcription of this episode!)

Every day, scientists are learning more and more about how human brains work and how many of us don't fit into the old fashioned understanding of how brains should work. But a lot of ideas about parenting and familial relationships still need to catch up to the reality of human variation. Neurological differences are natural, profoundly valuable parts of being in a community together and of being part of a family. Whoever you are, wherever you are in your journey, I am here to explore with you. We are all in this together.

Welcome to Neurodiverging.

[Music fades]

What Is Autistic Scripting?

Hello, hello, welcome to Neurodiverging. My name is Danielle, and I am so glad you are here with me today. Today we are talking about a question that I got in through an email to the website; I'm at neurodiverging.com if you ever have any questions. It was Caitlyn, [who] asked about scripting in autistic kids, and also had a question about whether adult autistic people still script sometimes.

So what I have [planned] today is just to talk a little bit about what scripting is, what it means, and why autistics use scripts, and whether parents really need to worry about it or not. So let's get into it!

So scripting is also called echolalia, and it is usually in children; it's a normal part of child development for all kids, neurodiverse or neurotypical. But we see it linger longer, often, in kids with autism, sometimes also in kids with other developmental delays. It is a repetition of words, and phrases, and speech sounds, and sometimes also intonation. It's often taken from somewhere. So the child watched a movie, or somebody was reading them a book, or somebody else just said something in conversation that the child overheard. And the child kind of, like, yoinks that phrase, and then repeats it out of context in later conversations-sometimes just over, and over, and over again, repeating it, and sometimes just, sort of, it seems random to a neurotypical person, it seems to lack context within the conversation.

People with autism often script a lot when they're learning to talk. But, for Caitlyn's question, even adults with autism script sometimes. I use scripts constantly, myself. That's a personal experience. I know some autistic people who use them very rarely, or only use them in certain types of ways; I use them all the time.

Why Do Autistics Script?

So, "Why do autistics use scripts?" is the main question.

Like I said, children who are younger and are still learning to speak use scripts in the process of learning to talk. It's very hard for kids to pay attention to the specific words people are saying on top of the social conventions that are taking place in a conversation. And so a lot of kids can only really focus on one of those things at a time. And so they'll use a script so that they can focus more energy on the social conventions that are going on between two people or among a group.

Adults also use scripts similarly. A lot of us-and I'll speak for myself as an autistic person-I have a lot of trouble following social cues in a 1-on-1 conversation, and even more trouble in a group conversation. I'm pretty much helpless in a group conversation. It's too fast, I can't keep up, I can't listen to the words and also process the social dynamics between people. You're asking me to look at and recognize emotions from people's faces. I'm a little faceblind anyway, so it's an extra ask. And then you're also asking me to follow sometimes a very fast conversation, sometimes among people I don't really know, and so I don't know their... their kind of patterns yet. I can't really tell what they're feeling or what they're thinking. And sometimes, I have trouble just understanding what they're saying, in a very basic way.

My partner, for example, when he is excited about something, he drops nouns. He won't use specific nouns, he'll just use "it" and "them" and "they." And I cannot follow it. I have to repeatedly ask for him to be more specific in what he's talking about. And it can be really frustrating for him, because he's excited, he wants to tell me, and I'm like, "What does 'it' mean in this sentence? Can you tell me about 'it'?" And that can be frustrating for him.

And he is my partner, and we lived together for over 10 years. So, much less in a conversation with a lot of people that I don't know, or people that I don't know that well or can't follow that well. I will fall back on scripting as a way to clear up some mental space for myself to process all the rest of it.

So, a lot of autistic people struggle to create speech that is spontaneous, that is kind of generative. A lot of us, it's a lot easier to find a script in our head from something else and just repurpose it. We've already probably processed that sentence or that couple of words, that phrase, and we know what it means, and we know different ways to utilize it, and it's really easy for us to just plug it into a blank space. Generating words for that blank space is way harder, uses a lot more processing power, and, just depending on who you're talking to, that processing power might be in short supply. My experience is that a lot of autistic adults still use scripting just to make life easier for themselves, to get more done during the day.

Echolalia As A Coping Mechanism for Cognitive Load

So I researched a little bit about this. Most of this is gonna be about, like, my experience as an adult, and also my friends' experiences as adults, and also my children's experiences. But I did look at a couple studies on echolalia. I am not an expert, nor do I play one on TV, so do your own research.

But what I found is that it's pretty well-known, from scientific studies on autistic kids, that echolalia in general-so not just scripting, but all kinds of repeated phrasing-is used as a coping mechanism to allow somebody with autism to add to a conversation when they're having trouble generating the speech themselves. And that's basically been my experience too. So my own experience seems to match up with what the scientists have found. So that's kind of interesting to know, from my perspective.

Now, scripting is, for me, a series of words or phrases that are dynamic, that I can memorize and sort of plug in to a wide variety of situations.

So, conversations about the weather, which my friends and I love to complain about- Conversations about the weather don't serve a purpose. They serve a purpose for a lot of neurotypical people, because I understand that they create kind of a sense of community and a sense of trust.

For someone with my brain, I'm not really interested in the weather, and talking about the weather with me won't really create any kind of bond between you and me. Talking about something I care about or something you care about will create a bond for me. But I understand a lot of neurotypical folks kind of go the opposite way, where they want to talk about something that doesn't really matter before they talk about something that's sort of more emotionally tinted. Whereas, I am interested in you and what you really think, like, that kind of deep thought philosophical stuff; I'm not really interested in what you think that cloud looks like, unless it links to something important in your life, ok?

But anyway, the weather. The weather is a really good place to deploy scripting. So I can memorize a couple of different responses about the weather, and then when somebody asks me about the weather, again, I go to a response that sounds relatively natural, that probably won't be interrogated further, so I don't really have to have, like, backups about the weather, and it solves that social issue that I'm having of, like, "What do I say to this person" without costing me a lot of processing time or a lot of function. And I'll use those scripts with meeting new people; I have a couple of go-to topics that most people are interested in that I can kind of deploy a certain amount of information about those topics and participate in a conversation. And hopefully, by that time, we've stumbled into finding something we actually have in common, and I can pull off of that. But, in general, I have a couple of go-to scripts that I use almost every day, certainly every week.

My experience is that a lot of autistic adults, especially those who are relatively verbal, kind of do the same thing just to get through the day. A lot of autistic kids do too. And autistics who are nonverbal often- we find that scripting and echolalia can happen even with alternative communication methods. So it's not specifically speech. It's most often speech, I believe, but you do see it in autistic folks who are nonverbal as well. And sometimes, with them, it's more of the intonation. If they're not using words, they're using specific kinds of sounds to create this communication for themselves.

5 Reasons Autistic People Use Scripts and Echolalia

So now, let's talk about: Why do autistics use scripts outside of having trouble producing spontaneous words?

So, there were 5 different ways that I came up with. I'm sure there is more. This particular bit I didn't do much research about, because I am not a speech therapist, I'm not any kind of expert in speech. This is just my experience, again, as a mom of an autistic kid and as an autistic person myself. These are the 5 that I've seen come up most in my life and in my kiddo's life, and that I think are possibly the most relevant at least for us, and maybe for other people as well. I don't want to speak to things that I really don't know about. So here are my 5! Ready?

Self-Stimulation and Self-Regulation

The 1st is that autistics use scripts as a form of self-stimulation and also as a form of self-regulation.

So you might have heard of stimming, and I gotta do a podcast on that coming up, but stimming is kind of a way we can self-regulate. It can be a way of exciting certain parts of our bodies or thoughts, and it can also be a way that we self-regulate.

Stimming is often physical. Like, I tap on things, and I wiggle my fingers a lot, and I pull on my hair. Sometimes people will rock, or bounce, or kind of bang, or thump on things. My kiddos like to thump on floor a lot, or kind of fall over and slump into the floor to get that big oomf at the bottom of the floor. There's all sorts of different kinds of self-stims.

But one kind of stim is echolalia. So repeating quotes or phrases from a movie that you really like, or a television show you really like, or a book you really like, or- Especially if it's a part of that media that you really identified with that character or you had a strong emotional reaction to it, you might repeat that kind of over and over. And it might seem very random to outsiders. But it fits in with your own thought process, where your brain is, basically, what you're thinking about. Also, sometimes if it's a script, or a couple of words or a phrase, that's stolen from a real life person who said something to you, you might use it when you're having an emotion [or] reaction that's similar to what was happening when you heard those words. Sometimes that's not it, but often it is.

And because you're not in the autistic person's head, sometimes you can't see that that's what's going on. So it looks, again, random and out of context, but internally, it makes sense to the person who's saying it. So, scripts are used a lot as self-regulation.

Also, as someone, myself, who is anxious and tends to get stuck on something and kind of circle around it over, and over, and over again, I can sort of use quotes that make me happy to trick my brain into a new context. To trick my brain out of thinking about something that I really know I shouldn't be thinking about anymore, and to thinking about something happy instead. So that's, again, the self-regulation that scripting can really help with.

Scripting as a Processing Aid

Ok, the 2nd time- ...not "time."

The 2nd reason that autistic people use scripts, that I can think of, is (I talked about it a little bit) as a processing aid. To move some of that burden off my internal server and onto this little script that just goes.

I don't have to generate a new sentence about the weather every time we talk about the weather. I have a set of 5 go-to sentences that generally are good enough, that takes a lot of the burden off of whatever the rest of my brain is doing.

So, don't underestimate the use of processing aids. Like, a lot of us just don't have a lot of extra processing power. We have to process a lot more things 1-by-1 than neurotypical people do. A lot of your processing is automatic, and ours is really, we have to do 1, and then 2, and then 3, and then 4. So it takes a lot more to do things that neurotypical people do every day; it takes a lot more for autistic people to do that. So, any way that we can shift that burden off of our brains and put it somewhere else is really helpful for us, and scripting is one of those things that really helps, so.

Scripting and Echolalia to Support Slow Processing

Related to processing, the 3rd thing is: Autistics use scripts to gain themselves some more processing time.

So this is echolalia in general, kids especially use it this way. So if somebody asks me a question and I can't immediately either understand the question or generate an answer to the question, some things I might do are: repeat the question, or sort of spitball a couple of answers that really don't make sense or don't really relate to the question the person asked but relate in my brain to accessing an answer to the question.

And sometimes it's, again, easier to just pull out a script that already answers the question. And I just have to find that script because I wasn't expecting it. So this is like, you know, I was in the kitchen doing dishes and wasn't expecting to be social, and then somebody comes in the house and asks me about the weather. I'm surprised, I wasn't really ready to talk to anybody, I maybe didn't save any processing power for this random question about the weather. So, instead, what I'm gonna do is give myself a little bit of extra processing time to grab those phrases that I have stuck down somewhere. It can just take an extra couple minutes when somebody's surprised, or overwhelmed, or whatever. So, if a child, especially, is using scripts a lot, or pulling speech out of movies or books or something, a lot of that is gonna be to create more processing time for themselves. Ok?

Scripting and Echolalia as Communication

And then the last thing, I think, that is the most common reason autistics use scripts, is as a form of communication overall.

And this is more related to small children, but sometimes a small child with autism repeating what you said is them saying, "I heard you." Again, it can be hard to generate your own phrases, and by repeating what you said, they are trying to get across the fact that they did hear what you said. And maybe they don't really have a response to it, but it could be "Yes, I heard you."

Or sometimes it could be "Yes, I agree." "Do you want to go to the store today?" If the child says, "Do I want to go to the store today," they might be agreeing that they want to go to the store today. Maybe not the best example for an autistic child, but there you go. Some of us like to go to stores, though. So, that depends on the child specifically, and it is, you know, something you have to- You have to get to know the kid first and figure out how, specifically, they're using their scripts. But a lot of kids do do this, and it's pretty common. So that's something that's just important to keep in mind.

Also a lot of us-and this kind of ties in again with all the processing and the self-regulation-a lot of us are pulling out scripts that we think match what you're asking. So if there's a mismatch between what you think we're responding and what you actually asked, sometimes it's just because we're not reading your emotional cue the right way, or we just misunderstood the context of your question. And we're responding in a way that we think is correct but just doesn't match what you actually wanted.

So make sure, you know- Especially for low resource, a lot of us are very literal, a lot of us need, like I was saying with my partner and him always dropping nouns, a lot of us need you to be really clear. Especially if we're tired, overwhelmed, etc. So make sure your sentence- Like, go back and edit your sentence, and make sure it had a noun, it had a verb, it had a subject, it had a- you know? Just make sure that the kiddo or whoever it is can really- It's very clear. It's totally clear. Ok? As a bell.

(I strongly recommend this book if you want to learn more about how to communicate more effectively with autistic people.)

The other thing I would say regarding that is that, if the person with autism is responding with a script, and it doesn't seem to match what you asked, sometimes that's because our script is related to something internal that you can't see. So we think we're responding in a way that's generalized and that anybody can access, but really we're responding in a really personal, unique way. So especially if a script, especially with a kiddo, is pulled from a movie or a book or another kind of media, and that is related in our brain to something emotional-like, maybe the person in the movie said something right before they went to the store, but the sentence itself doesn't have anything to do with the store. The kid might use that sentence to be like, "Yes, I want to go to the store." But you didn't see that movie, or you don't remember that it was right before the scene change, and so it just doesn't make any sense to you.

Echolalia, scripting, is communication, almost all the time. Like, I don't know, 85% of the time. Sometimes it's just stimming, and sometimes it's just a calming method. But most of the time, we're talking because we think you want to hear us, or we think that you've asked us to talk. We're trying to answer you. So if the answer isn't working, that's more of a miscommunication than some other kind of issue. So, alright.

Do parents have to do anything about child echolalia or scripting?

The last part of what I want to talk about today is: Do parents have to do anything about their child's scripting? And this is, again, from Caitlyn. If you notice that your kid is repeating a lot of words and phrases, do you need to do anything about it?

So what I will say-again, not a medical professional-I have 2 kids, one is 7, one is 5. They both do this kind of repeating pretty often, and so do I, so that's a personal experience, it's not really related to anything else.

(You might hear my cat in the background, I'm really sorry.)

Do parents have to do anything about their child's scripting? Not really. Like, if it's interfering with your ability to communicate at all, talk to a speech therapist, talk to an OT, and see if maybe an alternative communication method might be a good fit for you and your family, at least while your child is building skills. You might need to, as a parent, figure out how your child is using their scripts. And this can be occasionally frustrating, I'm not gonna lie, because you and your kid might have different frames of reference. Have you seen every kids' movie that your child has ever sat through? Because I have not. I know that I'm supposed to, but sometimes you just can't watch another 2 hours of a children's movie, and I'm not gonna feel guilty about that.

So anyway: if your child is pulling scripts from- And sometimes they're pulling it from conversations you weren't privy to or whatever. But if your child is pulling from media, which is very common, figuring out the context of what they're using in the movie can really help you figure out how they're using it. Not always, but a lot. So, you might need to do some legwork to figure out, you know, where did your child pull this set of words from, and what might they mean when they're using it? What might they be trying to express? Is it emotional content, is it data, is it some kind of logic content? Like, what is happening there?

And the other thing- I would also just want to back up a little bit and say that learning those scripts is not particularly different than learning neurotypical preferences. So you have friends, I'm sure, who speak differently than you. We're all from everywhere nowadays. And you know that some people like to be spoken to in a more polite way, some people are a little bit more casual, you know. And you might be using different sorts of voices and tones with different folks anyway. So figuring out how your child is using scripting and adapting what you're doing for them is not particularly different than learning neurotypical preferences.

Also remember, your kiddo is doing so much work to try to figure out what you want as a neurotypical person, if you are neurotypical. My autistic kiddo and I understood each other really well; my ADHD kiddo and I don't get each other at all. We have completely different brains. We have had to do so much work to understand each other. And she did just as much work as I did. So remember that your kid is working really hard, and you can work a little bit too. Ok?

Another thing is, you and your child can develop scripts together. So this has happened also with me and my partner. We noticed, at some point, that I was using scripts in a way that wasn't getting across to him, and we kind of did a debrief. I'm a lot older, I have more verbal skill, I can choose when I feel like talking about how I use scripts and when I just can't handle it. So, you know, I have a little bit more liberty there. But over time, we've sort of figured out, when I say this, I'm trying to express this kind of emotion. And now it's just natural to him.

You and your kiddo can also develop scripts together, so you understand what they want, and so that-and this is important-when your child is overwhelmed and can't do spontaneous speech, you can cue them. So if you know that-I talked about this a little bit in a previous episode with my ADHD kiddo, and how she gets overwhelmed, she can't decide what to eat, right?-so she and I have a couple of cue phrases that she's learned that are shortcuts. So, if she's overwhelmed, I can swoop in and prompt with the specific shortcut that we've both agreed upon ahead of time and have been practicing. And it's much more easy for her to access that script than it is to, you know, spontaneously come up with some kind of answer to me.

So, if you and your child, especially if you can practice during calm times, if you can work with them during calm times and understand their scripts, you will have better success prompting them to communicate when they are already overwhelmed. And also just showing them that you understand them, ok?

Another thing I would say is echolalia is a normal part of child development for all children, regardless of brains. And even for autistic kids and other kids with developmental disorders, it can be part of who your child is and not really something you need to change. If you're worried about it, I will say that it does tend to decrease as your kiddo learns other ways to communicate and other ways to cope with overwhelm and stress. Because, like I'm saying, scripting is, as a whole, a response to not having enough processing power. So the more things you can free up? Like, think of your computer, right? The more memory, short-term memory you can free up, by deleting apps you don't need, not having things run all the time- So clear your schedule, give them downtime, give them coping strategies when they're calm. Practice them when they're calm. And the more your kiddo can pick up on those communication methods and coping strategies and put them in short-term memory, the better they'll be able to grab them when they need them, and the less they'll need to grab that script instead.

So what you're trying to do is not necessarily... Don't do anything with the echolalia specifically; don't try to get it to change. Try to understand it. And then try to, like, sort of ignore it and focus instead on what kind of coping strategies you can be working on with your kiddo so that they don't need to grab the scripting as often, ok?

And that's, again, I'm not saying kids shouldn't script. I script; I am 34. It's just gonna happen. Do I use it as often as I used to? No. Because I have a lot more coping strategies now than I did. So, you know, it really can help. And it is true that scripting can be internal to the child and difficult to translate to new people, and so having other communication methods can be really helpful for everybody involved and less stressful for your child overall.

So you need to teach your kid expressive and receptive language skills. So, how to get their meaning across, and how to hear what other people are saying and communicating. And there's lots of different ways to do this, and it depends on your kiddo and their abilities and their needs, and I would really encourage you to talk to a medical professional about what's a good fit for you. We have had great success with speech therapy and occupational therapy in our family, but it completely depends. It completely depends on who you are and what you need. Go talk to your community, get recommendations, and work from there.

[Music fades in]

So I hope that helps, Caitlyn. I hope that gives you some good information from an autistic point of view on why we're repeating things all the time and what the value, for us, is, there.

I want to thank you all for listening to Neurodiverging this week. I'm Danielle. We have a website over at neurodiverging.com , and there is a transcript over there if you have any questions or you want to review any of this material.

We are posting new podcast episodes every Thursday and blog posts when I have the time, which is hit and miss with my kids home with me, but we're gonna do our best over here.

If you have any questions, like Caitlyn did, please do go to the website and reach out. And I would honestly love to hear your questions or your input. What did I miss? What should I have said instead? Alright. Thank you again for listening. And remember, we are all in this together.
If you have any questions like Caitlin did, please email me! I would honestly love to hear your questions, comments, and input. What did I miss?
💌 If you find this post useful, please consider supporting Neurodiverging on Patreon! For just $1 USD, you'll get special access to sneak peeks, rough cuts, opportunities to help select upcoming podcast topics and guests, and other perks!

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Echolalia and Scripting in Autism: Why We Autistics Repeat | Neurodiverging

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Do you have an autistic friend or loved one who repeats everything you say all the time? Or do you know someone with autism spectrum disorder who's in the habit of talking to themselves? Most repetition is a result of echolalia and scripting, and both are common among young children and aut ...

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Rooted in Lived Experiences: Black and Asian Considerations for Autistic Masking

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Rooted in Lived Experiences: Black and Asian Considerations for Autistic Masking

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V. Tisi (/vi/, they/she) and Asiatu Lawoyin (/ˌɑsɨˈɑtu/, they/them) discussed the intersections of anti-Blackness, anti-Asianness, and autistiphobia, and how behaviorist ideologies promote assimilation that oppresses our communities. Justice perspectives go beyond diversity, equity, inclusion, and must include the analysis of systemic oppression, how it implicates identity-erasure, and centers whiteness and neuronormativity.

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Rooted in Lived Experiences: Black and Asian Considerations for Autistic Masking

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What Does Non-Ableist Pragmatic Therapy Look like?

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What Does Non-Ableist Pragmatic Therapy Look like?

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https://therapistndc.org/therapy/non-ableist-pragmatic-language-therapy/

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It is important for neurotypical therapists to understand that social interaction can be exhausting for autistic people and other people who are neurodivergent, especially if they are being pressured to imitate neurotypical mannerisms and mask their autistic behavior and feelings. Therapist Neurodiversity Collective therapists don't "train" social skills. Historically, social skills therapy has been generally based upon neurotypical expectations that do not take into consideration the diversity of the populations we serve.
Examples of Neurodiversity Paradigm Aligned Objectives:

Self-Advocacy, self-determination

Perspective Taking: Client and family, instructors, peers

Interoception for: Self-Regulation, Self-Awareness, Problem Solving

Teaching how one's body sensations correlate to emotions

Figurative Language: Metaphors, Similes, Personification, Hyperbole, Symbolism

Building upon strengths

Note on Perspective Taking Therapy: Targeting perspective-taking may include teaching children and teens to understand how and why neurotypicals act the way they do in various settings and situations without the expectation for the child or teen to imitate neurotypical social skills through the masking of their neurodivergence. Therapist Neurodiversity Collective does not use rote social scripts or social stories that compel verbal or behavioral compliance as this takes away personal agency, self-determination and leads to inauthentic communication.

Perspective-taking goes both ways: If perspective-taking is addressed with a student or client, it must be addressed with their family, instructors, peers, and the other people in the person's life regarding Neurodivergent/Autistic Social Skills. Research backs this up. Contemporary research in Diversity in Social Intelligence, The Double Empathy Problem, and Autistic Masking demonstrate that social skills training is an archaic approach to therapy.

Examples of Ableist Objectives:

Treating Autism

Eye Contact with Communication Partner

Quiet Hands and Whole Body Listening

Extinguishing perceived neurodivergent social deficits

Teaching social scripting that encourages masking (feelings, emotions, stimming, sensory needs, quiet hands, compliance for rehearsed role-play, etc.) "Social Stories*" that are written and used in a manner that is meant to compel compliance

Social skills goals that focus on making the client appear indistinguishable from their neurotypical peers

For Further Reading:
On Writing Masking Goals for Autistic Middle School Girls - Stop It! An Autistic SLP's Experiences with Social Communication
"Training" Social Skills is Dehumanizing
How to address pragmatic language and social skills while respecting neurodivergent differences.
Why Perspective-Taking and Neurodiversity Acceptance? (Part 2 of "Training" Social Skills is Dehumanizing: The One with the Therapy Goals) The costs of camouflaging autism The Consequences of Compensation in Autism For Those With Autism, Eye Contact Isn't Just Weird, It's Distressing Eye Contact: Is It Important? What's The Problem With Whole Body Listening?
The Self-Advocacy Curriculum is a tool that is intended to help individuals with autism and other developmental disabilities learn more about the self-advocacy movement; celebrate neurodiversity; cultivate local self-advocacy groups; and ultimately, become and remain empowered through self-advocacy. - The National Autism Resource and Information Center and the Autistic Self Advocacy Network

THINKING PERSON'S GUIDE TO AUTISM - The Meaning of Self-Advocacy "Self-advocacy has been and is still often labeled intransigence, non-compliance, treatment resistance, lack of motivation, behavior issues, violence, manipulation, game-playing, attention-seeking, bad attitude, bad influence, babbling nonsense, self-injurious behavior, inappropriate behavior, disrespect, disruption of the milieu, catatonic behavior, social withdrawal, delusions, septal rage syndrome, and even seizures or reflex activity."

The ARC -POSITION STATEMENTS - Self-Advocacy "People with intellectual and/or developmental disabilities (I/DD) must have the right to and be supported to act as self-advocates. Self-advocates exercise their rights as citizens by communicating for and representing themselves, with supports in doing so, as necessary. This means they have a say in decision-making in all areas of their daily lives and in public policy decisions that affect them."

SO WHAT MAKES A GOOD THERAPIST? "Good therapists help children with finding ways to communicate, fostering independence without pushing too hard, understanding sensory issues, self-advocacy, learning to jump or ride a bike, understanding how to assess people and situations for danger, processing emotions in a way that is self-validating, and learning many new things the child desires to enhance their life."
Autistic People. So, new Research. Different social skills, not broken ones
Interoception "The ability to tune into the activity of our internal organs is called interoception and there is emerging evidence that this ability is linked to how well a person is able to identify their own emotional state and to empathise with others."
GETTING TO KNOW YOURSELF - INTEROCEPTION AND AUTISM Activity Guide - Interoception 201
What is interoception? "Interoception is a pre‐requisite skill for self‐management and self‐regulation. It provides the tools to know when we are developing emotional reactions and the skills to be in control of those reactions

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Non-ableist Pragmatic Language Therapy | Therapist Neurodiversity Collective

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It is important for neurotypical therapists to understand that social interaction can be exhausting for autistic people and other people who are neurodivergent, especially if they are being pressured to imitate neurotypical mannerisms and mask their autistic behavior and feelings. Therapist Neurodiversity Collective therapists don't "train" social skills.

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From Autistic Linear Spectrum to Pie Chart Spectrum

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Key points

Thinking about autism spectrum disorder in a linear fashion can lead to unfair comparisons of experience.

There is no "good" or "bad" autism, nor "easy" or "difficult" autism.

Moving towards a pie-chart model could better encapsulate the diversity of experience within autism, researchers argue.

Even as a practitioner who works with autistic women, and as an autistic woman myself, understanding what exactly autism spectrum disorder is can be difficult. We tend to think of spectrums in terms of a linear progression-from high to low, moderate to severe, 1 to 10, or good to bad.

Indeed, ASD is currently categorised into levels 1, 2, and 3. Level 3 includes people who may have significant learning difficulties and includes non-verbal people; level 2 includes people who would struggle to live independently; and level 1 includes people of average or above average intelligence who have the capacity to live independent lives. The implication is that, as we move up through the spectrum from level 3 to level 1, people experience autism in less intense or impactful ways and that level 1 autism isn't as "severe" as level 3 autism.

However, thinking about autism in this way is little comfort to many level 1 autistic people whose symptoms cause difficulties in almost every aspect of their lives. People with a level 1 autism diagnosis are more at risk than the general population of mental health problems, suicidality, career difficulties, bullying, and abuse.

One tool that practitioners have at their disposal, and that could help explain the autism spectrum in a non-linear way, is a pie chart, similar to the wheel of life used by some life coaches. The "pie chart" or "autism wheel" model is advocated by researchers who regard the linear model as static and limited. Bradshaw, et al. (2021), for example, note that "Using functioning labels and autism levels overlooks the real challenges and barriers of autistic people who may not outwardly appear different, and minimises the strengths, abilities, and capacities of those who do."

What the Autism Pie Chart Model Looks Like

In the pie chart model, individual autism traits are represented by individual sections. It provides a visual representation of those autistic traits that someone might be higher in, compared to those they might experience in a lesser way.

For instance, someone might score 10 out of 10 in terms of anxiety or meltdowns, and 7 out of 10 in terms of sensory processing difficulties. Another person might score 10 out of 10 in terms of sensory processing, and 7 out of 10 in terms of anxiety or meltdowns.

Below are two examples from my clients, both diagnosed as autistic, who have very different experiences of autism. Neither is "more" or "less" autistic. Both are autistic.

Although the pie chart represents a simplified picture of autism and cannot include every trait, I argue that it shows very clearly that autism comes in all types of shapes and sizes, and that there's no such thing as "easy" or "good" autism.

The pie chart model, or autism wheel, also acknowledges that autistic people's symptoms may change and develop through time, and allows for a fluid development over the life span. ¹ In a clear visual way, it allows us to see each autistic person in all their uniqueness and complexity.

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From Autistic Linear Spectrum to Pie Chart Spectrum

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Thinking about autism spectrum disorder in a linear fashion can lead to unfair comparisons of experience. There is no "good" or "bad" autism, nor "easy" or "difficult" autism. Moving towards a pie-chart model could better encapsulate the diversity of experience within autism, researchers argue.

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On Using the terms, "NonSpeaking", "Minimally Speaking", Or "Unreliably Speaking" Over “Non-Verbal”: NonSpeakers Weigh In

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On Using the terms, "NonSpeaking", "Minimally Speaking", Or "Unreliably Speaking" Over “Non-Verbal”: NonSpeakers Weigh In

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By NeuroClastic

August 14, 2021

The words we use influence our own and other people’s perceptions. Non-verbal communication is something we all do — sighs, eye rolls, smiles, stomps, laughs, blinks — but what does it mean when we label a whole person as “non-verbal”?

Nonspeaking doesn’t mean I have no ideas or no way to communicate them. Nonspeaking doesn’t mean I can’t learn to read or write like everyone else. But I can’t if you don’t teach me how. And calling me nonverbal is like saying I can’t learn to read and write.
~ DJ Savarese

Read the whole blog: NonSpeaking ≠ NonVerbal | Listen2Us

I prefer to be called non-reliably speaking. I am perfectly capable of thinking and making intelligent choices regarding my life if I have the facts to analyze. However, my speech is not always reliable, so I have to slow down, think about the placement of my mouth and my articulation, and spell out a word, letter by letter.
~ Rishi Jena

See Rishi’s blog: Rishi’s Totally Optimistic Journey!!

I prefer nonspeaking. Much of what comes out of my mouth is unintentional. I am nonspeaking because speech is not how I communicate.
~ Wyatt Dutton

See Wyatt’s blog here: Young Man Replete with Love

I prefer non-speaking as I understand all language. Non-verbal suggests I don’t understand language and doesn’t represent how I love language.
~ Matt Crittenden

Read more from Matt here: The Joy of Communication

I think that non-speaker tells a more accurate story about the person because that person simply uses a different way to communicate. Other non-speakers might think differently.
~ Mitchell Robins

See Mitchell’s blog here: Differences in Non-Speakers | Mitchell’s Life with Autism

I like to call myself nonspeaking because i can communicate by spelling words instead of speaking. nonverbal implies i do not understand words. how can i communicate with words if i am nonverbal?
~ Philip Reyes

Read Philip’s Blog at Faith, Hope, and Love…With Autism, follow his Facebook Page and check out his articles on NeuroClastic.

I am fully capable of speech, I just can’t let you know by “verbalizing” it out loud. Just because I need to use a letter board – or another form of Alternative Communication – to share my words with the world does not at all imply I not saying things worth hearing.
~ Ben Breaux

#SemanticsMatter

#NonspeakingNotNonverbal

Follow Ben’s Facebook Page: Ben B. – “My Own Words: Reflections of a Non-Speaking Autistic and check out this review of The Reason I Jump.

Non-verbal brings forth a slew of assumptions about me that are entirely inaccurate – including lack of understanding language, aggressive behaviour, lack of emotional intelligence, and cognitive impairment.

I prefer non-speaking as it is a short description that encapsulates who I am more accurately. It also makes people stop and think instead of relying on what they know about me based on what they observe.
~ Jordyn Pallett

Read Jordyn’s Blog: Jordyn’s Rocky Journey and follow his Facebook Page.

The topic of what to call autistics powers the future momentum of our lives. I hate being called nonverbal. It shuts us out of the places we belong. It lowers the places we are in. The places we try to get to are very loud. They are kept for the people with loud voices. Let us be nonspeakers. That’s the gateway to who we are capable of being.
~ Tejas Rao Sanker

Writing for Autistics, makes Autistics learn how to use words carefully. Going to Autistics, getting their in-use words, informs the power autistics have over their words. Let us use the word nonspeaking for Autistics who cannot use speech reliably or at all. It best describes the situations we are forever in. Its future is ours. Trusting words to mean the same in our Autistic movement is the way we go further together.
~ Tejas Rao Sanker

Check out Tejas’ articles on NeuroClastic.

Being nonverbal means I have no words, which is as far from the truth as it can be. I have words, but I can’t get them out with my voice.
~ Gregory Tino

Read more from Gregory here: The Autistic Mind Finally Speaks.

I prefer to be called a nonspeaker.People may think I am not smart because I lack speech. I know better than anyone that Labels are not important.
~ Arun Chand

Check out the latest issue of In Words We Trust, V3 issue 1, for which Arun was assistant editor.

I have words so nonverbal does not describe me. I speak but my words dont reflect my thoughts. My ipad and keyboard are my voice. I would like to have a word that describes me accurately.
~ Jake Reisman

*As always, respect the individual person’s choice, but when referencing a group, go with the preference of the majority.

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This article is either a team effort or is published anonymously at the author's request.NeuroClastic is a nonprofit collective of neurodivergents rewriting the narrative about autism in our own voices. Thank you for visiting, and be sure to help us get out the word by sharing our articles and telling a friend about this site. Like our content? Click here to leave a tip.

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2. Reading this was a pure joy! I clicked through on all of the links and have received so much wisdom from every single individual profiled here. Those who have Facebook pages or blogs which I could select to follow, I am following. I don’t want to miss a single word. How anyone can presume that these beautiful people have nothing to contribute is beyond me. Every one of these voices is valuable.

3. As a non-autistic and aging 70 yr. old white male, I have been LEARNING from this website managed by Terra for the last 3 years since Greta surfaced in Sweden. Then, Terra publicly chimed-in with some timely online education reflecting both Autistic & Aspergers definitions and characteristics. I was specifically looking to learn about this different human trait being professed by a 16 yr. old tiny female while orating to Politicians that “their houses were on fire and they should indeed panic!”

Today’s NeuroClastic Instagram series of illustrated TEXT STATEMENTS about non-speaker’s specific purpose, meaning and feelings –– was wonderfully laid out. Told a great story and helped me further interpret those who think that they cannot talk… Kudos. EXCEPTIONALLY Well done! 🙂

Two months ago after reading more from a non-vocal very young blogger here, I began pondering totally from a mechanical or medical perspective of why someone who can read, write and communicate well –– couldn’t form vocal words if vocal cords, etc., were all in good working order… Where was the breakdown in converting thoughts into spoken, verbal words? Could this be a nerve fiber issue?

My initial thoughts were learning how to speak normal, basic, first audible infant words of Mom, Mama, Mother or Dad, Dada or Father. Then up the learning ladder just like with reading, “see Dick and Jane run and jump, etc.” It is only a quick train ride and you are reading outloud and discussing The Cat in the Hat, etc… I was thinking basics of how to form words, ‘get that closed jaw jacking just a little’ and doing something else besides chewing food. And once a few basics of a, e, i, o & u phonic vocalizations are learned via the throat’s vocal exhale, then the NEW beginner’s own vocabulary can begin emerging.

Sounds quite doable to me. But what the hell do I know? I’ve been a fast and furious talker all my life…

Here is your Science Lesson: Just get over the initial “can’t do it” HUMP and begin something NEW, big and wonderful. It is just like quitting a terrible, addicting nicotine habit in reverse. It IS DOABLE… Simply BEGIN it… Two centuries ago, old Goethe wrote it down and said “DO IT NOW.”

I’ve met someone who when seriously injured and laid up for months in a leg cast, took on the task of reading the Websters Dictionaries, both Western and London versions from A to Z. Fifty years later, the same individual surprises me all the time by using “fancy” new words which really describe something deeper, more incredible. Words that are quite special and not at all common.

Just guessing here –– that some verbally silent autistic people would likely exude a deeper and unique new vocabulary, just as they hone-in their own special brain power, packaging it into special quadrants within their own noggin. Now I am chuckling… Imagine a new post ‘Covid’ Conference Gathering of former autistic non-speakers who simply learned later in life how to vocalize. I’m sure the ice-breaker conversation on the sign-in conference floor would be unique indeed. Good luck! And I’d meet you there and share in a special science lecture discussion about the Oxygen Atom. Bye. 🙂

1. Problems with speech but not reading and writing are either because of differences in coordination, such that your brain has problems telling your tongue what to do, or differences in things like pragmatic communication or audio processing, such that you’re kinda too un-synced to know where to begin to communicate and spoken language is just too much too fast to keep up two-ways.

Confidence almost never has anything to do with it. If anything, its the parents, teachers, and guardians’ lack of confidence that hold autistic people back from communication methods.

Autistic people struggling with mentally creating a spoken language sync with others can sort of fake that sync with scripts, but that’s kinda a highly complicated form of written word, not actual spoken communication. That’s just something that appears like spoken communication from the outside.

4. How do we know this isn’t just the next step in the euphemism treadmill? Maybe 20 years from now all the stereotypes people have attached to nonverbal now will be attached to nonspeaking, and people will be calling for another term to replace it.

1. Nonspeaking is the identifier preferred by the community and not a label imposed by those outside of the lived experience. There is a survey of the nonspeaking community on this very website, for those who want evidence of this preference. It behooves us to respect any minority or oppressed population’s declared preferences. Those whom society and medicine have labelled “nonverbal” have tokd us that they prefer to be called nonspeakers, spellers, unreliable speakers, or delayed speakers, depending upon which status applies to their particular circumstance. They do NOT want to be called “nonverbal”, which, as this article describes, is inaccurate. People who use mouth words do not get to determine which identifiers are appropriate. Nonspeakers are capable of and deserving of self-determination.

6. My son is non-verbal. He is not lacking the ability to communicate. The people around him need to learn to hear differently.

Talk to us... what are you thinking?

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On Using NonSpeaking, Minimally Speaking, Or Unreliably Speaking Over “Non-Verbal”: NonSpeakers Weigh In

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“I prefer nonspeaking as I understand all language. Non-verbal suggests I don’t understand language and doesn’t represent how I love language.”

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8 Autistic Adults Discuss Their Autism Diagnosis Process

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8 Autistic Adults Discuss Their Autism Diagnosis Process

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Diagnosis of Autism in Adults: Nine Autistic Adults Discuss Their Autism Diagnosis Process

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By Terra Vance

December 16, 2020

We’ve been taught that there are ways to communicate, demonstrate empathy, and show relatedness, and that to do so differently is to do it “wrong.” Autistic communication is often discussed as if it is lacking in empathy, a moral failing that results in failure to connect.

But communicating differently should be embraced. There is more than one way to relate to each other, and those who relate differently shouldn’t be sent the message that they need to change in order to deserve friendship and mutual respect.

Instead of social stories, NeuroInclusive Stories are meant to be shared with anyone, regardless of whether they are disabled or not, to help all people navigate differences in a way that embraces inclusion and diversity.

Click here to download Chatting and Infodumping. You are free to reproduce, enlarge, display, and use this NeuroInclusive story, but please do not remove the logo or URL from the front page or edit the text. If you wish to translate it to another language, please use the contact form or connect with us on social media.

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I’m an industrial and organizational psychology consultant, parent, former language arts teacher, former DBT counselor, and founder and CEO of NeuroClastic. My passions are in social justice, diversity, inclusion, literature, science, and disability rights. I’m an unpaid volunteer. If my writing has been meaningful to you, you can
click here to leave a tip, click here to gift my child, or let me know your thoughts in the comments.

Latest posts by Terra Vance (see all)

Free PDF download: Thin Slice Judgements and The Different World Autistics Inhabit - May 5, 2022

When a Non-Autistic Child Is Raised by Autistic Parents, Their Experiences Are Similar to Autistics Raised by Non-Autistics - February 10, 2022

Difficult Community Dialogues: On ABA, Evolution, Weaver Communication, and Intersectionality - January 18, 2022

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4 Responses

1. I love it! I’m so excited to see the next neuro-inclusive social story.

2. Downloaded and saved it to my COMMUNICATION folder, not my Autism folder 😀 😀 I absolutely love this

Talk to us... what are you thinking?

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Free PDF Download of NeuroInclusive Social Story: On Chatting and Infodumping

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Free download of the NeuroInclusive Social Story, Chatting and Infodumping. Do you like to chat, or dive deep? Either way is A-okay!

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Parents, therapists, educators-I say this with so much love in my heart. You are trying your goddamn hardest. And yes, being burnt out and disillusioned and complacent still counts as trying your hardest. The same systems and structures that made all of you so sick, so burnt out, is making our neurodivergent kids so sick and burnt out. Things have been bad for a while, but the COVID-19 Pandemic was really the final straw that broke the camel's back.

You know all those neurodiversity-affirming supports and strategies for regulation? It isn't that if you just did it a certain way, the neurodivergent kids would be able to self-regulate. It isn't that if you just took the next professional development or the master class, the neurodivergent kids would be able to generalize a coping skill. You've tried it all. I know. I've tried it all too.

And here comes the part where I bring up myself. My own personal experience. It relates-I promise. I need to mention it, at least briefly, because it has profoundly impacted how I clinically practice, how I talk to team members, and how I provide professional developments. I will discuss it plainly. Depersonalized. Just present facts.

A lot of my life I was mentally unwell. And then I went on extended medical leave. I got better. So better, in fact, that I am feeling emotions I haven't experienced since I was in elementary school. My nervous system literally healed and is still healing.

I am learning new skills. I am doing that thing where I can remain somewhat calm and reflect on a difficult situation. I can pause and table some thoughts because I know that those thoughts aren't benefitting me right now. I can look back at what I have been able to do and feel proud and have the confidence to try new things. I can practice restraint in how I respond to sudden triggers. And I can look back at what I have been able to accomplish and feel comforted by that, even in difficult times. Sometimes these things are harder than other times, and sometimes I can't do these things. But now I know I have the ability to do these things, and it took me being mentally ok for me to be able to do them.

And I bring this up because, god damn. My experience of being autistic has fundamentally changed, and so my conceptualization of autism and how an autistic person can feel and live has fundamentally changed.

These strategies-the deciphering bodily cues, the reflection on feelings in the present verus other situations, the vary many types of emotion and regulatory-strategy visual aides-the reason these skills don't seem to build on each other significantly over a long term is because they are presently inaccessible. They are good strategies and supports, and they can work under the right conditions. But presently they are inaccessible because our neurodivergent kids are mentally unwell.

And I need to be careful here. I do not want to make the mistake that I have made in the past-assuming that every autistic person's experience is just like mine. That's not true. Of course not every autistic or ADHD child we are seeing for services is mentally unwell. I can't make an absolute statement. But by the time they have an IEP, they are usually seeing us because there is some sort of problem.

You want to know why that one autistic kid is just steamrolling through peoples conversations? Even in the autistic-only social group? Even when told its important to hear everyone out? Even when providers attempt to bring in some self-awareness to this child?

How about why that the hypervigilant anxious autistic kid who has been in counseling for years and seems to be unable to use meaningful strategies when the same or new difficulties arise?

Or why that autistic kid seems to be taking some sort of pleasure in inappropriately provoking others?

Or why that autistic kid is ruminating, looping looping looping on one subject and unable to move past it?

It isn't you-the kids are just mentally unwell. That's it. And you might be thinking "jeez, well a lot of the kids on my caseload act like that-but it's just the autism." It's not the autism. Or the ADHD. It's that your caseload of kids is mentally unwell.

I used to not understand this. I didn't understand that sometimes what you get when you stop pressuring a mentally unwell autistic person to mask is a mentally unwell autistic person who has permission to display crisis. They are now outwardly in crisis as opposed to inwardly in crisis, but they are misunderstanding autistic demonstrations of that crisis as an inherent part of their identity.

I have had the pleasure of seeing several happy healthy autistic kids as clients. I also know several happy autistic kids of autistic friends of mine. The common thread connecting them, me, you, us ....is having a sustained period of time of feeling safe and secure. Then we help build resiliency. Then we model strategies. Then we problem-solve.

And sometimes that sustained period of feeling safe and secure won't come for a while. It could also be inaccessible-for a variety of reasons. But in the meantime...what the heck do we do?

Let's take that autistic kid who steamrolls through what others are saying and has little self-awareness and is generally agreed upon to be annoying because they are actually doing something that even the most patient of people would find annoying. The anxious kind of annoying.

Social skills curriculums still aren't the answer-they fundamentally can't help this child understand that everybody's ideas should be heard. Neither can SEL curriculums. The child isn't at a mental place to learn this skill. To sit and feel impatient and tolerate that discomfort of impatience. What we do is going to depend on a number of factors. Things like the kid's age, the team members, the values of the parents, administrative pushes towards data-driven "progress," the kid's history of trauma and the nature of that trauma, etc.

Then we clinically problem-solve this complex situation. We analyze it as a team and come up with ideas. And that can feel hard, and we can feel impatient because we want quick solutions too. But we need to be honest with what is going on here, and we need to come together as a team. We gotta slow down and think to help our clients slow down and think.
We need to treat ourselves compassionately to be able to treat our clients compassionately.
And here comes the part where I plug my and V Tisi's course. In Let's UNMASC: Understanding Needs and Motivations of Autistic Social Communication, V and I walk clinicians through how to do the clinical problem-solving of complex situations. The teamwork. The self-compassion. We go through it all. Check it out.

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It Isn't You-The Kids Are Just Mentally Unwell - Rachel Dorsey: Autistic SLP, LLC

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It isn't you, and it isn't the autism or ADHD either.

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Morénike Giwa Onaiwu: Advocacy without Borders

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Morénike Giwa Onaiwu: Advocacy without Borders

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https://advocacywithoutborders.org/morenikego/

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"I am here to open minds and to open hearts; to fill minds and to fill hearts; to change minds and to change hearts. That’s why I do what I do."

Advocacy

“Advocacy is in my blood, coursing through my veins… it is for me a way of life.”

Writing

“Writing is my native language…when my fingers are on a keyboard, or screen, or writing utensil, the real me emerges so readily. I’m free.”

Speaking

“I’m in my zone when I’m talking about and doing things that I am passionate about.”

Projects

“The time to DO something is now, not later. Not only so that I can try to make things better for the future, but also so that I can lead by example.”

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Advocate, Public Speaker, Writer, Educator, Researcher, Mom

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One of the key traits of autism is sensory processing differences. One of our most important jobs is to create a learning environment that is comfortable to each client's senses. None of us can function well when we're uncomfortable, much less in pain. Each person's sensory profile is different and complex. Some people are very sensitive in certain areas. They might feel overwhelmed by other people assume to be negligible sensory input. For example, seams on clothing might feel like razor blades. Some people are under-sensitive in certain areas. In that case, they might need the sensory information to be very strong before they feel it. A child with a high pain threshold might not report an injury for example. Many times, one person will simultaneously have high sensitivity to some things and low sensitivity to others. Get to know them and what makes them comfortable! There are a lot of ways to offer sensory support and here are a few examples:

Start with an assessment of the person's sensory profile. Here are some tools for doing this kind of investigation https://affectautism.com/2015/10/30/sensory-processing-profile/

"Sense and Sensitivity": Sensory Phenomena in Autism. An overview of how important it is to consider the sensory environment when working with autistic clients.

Sensory Differences: A Guide for All Audiences

Autism and light sensitivity. Many autistic people are so sensitive to light that they can see the flicker of the cycles in fluorescent lights. Imagine trying to learn in a classroom that actually feels like a strobing disco! Simply allowing a child to be in an environment with natural light can make a huge difference.

Stimming: What is it and why is it important?

Helping a Child Cope with fear of storms. This is a very specific example, but the ideas are very generalizable. For example, give information that takes the fear out. Help the child anticipate when the event is happening so they can feel in control. Help them block out the hurtful input (e.g., use earphones to block out loud sound).

Living with sensory overwhelm and meltdowns

I Am Autistic: A Workbook: Sensory Tools, Practical Advice, and Interactive Journaling for Understanding Life with Autism (By Someone Diagnosed with It)

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Disclosure of autism at work holds risks & benefits

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Disclosure of autism at work holds risks & benefits

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THIS ARTICLE IS MORE THAN FIVE YEARS OLD

This article is more than five years old. Autism research - and science in general - is constantly evolving, so older articles may contain information or theories that have been reevaluated since their original publication date.

Autistic people generally want the same things in life that our typical peers do, regardless of where we fall on the spectrum: a sense of purpose, independence, human relationships and things to do. But most of us are unsure how to achieve these objectives.

In the past several years, the Interagency Autism Coordinating Committee (IACC) has highlighted research addressing 'lifespan issues,' such as housing and employment. The findings confirm what many of us know from experience: Although autistic adults are employed at rates higher than for any other group of disabled adults, only 42 percent of us have jobs in the years following high school - a gloomy statistic, at best.

The studies do not address important aspects of job satisfaction, however. Researchers have looked at whether people are employed and the number of hours they work, but they rarely examine the types of jobs individuals have, how much they are paid or whether they have opportunities for advancement.

Just having a job isn't enough. It is important that we enjoy our work, keep our jobs and have opportunities to make progress.

One central question those of us with jobs face is: Do I disclose my autism diagnosis to my boss and coworkers?

Unfortunately, scant research addresses how disclosing an autism diagnosis affects the attitudes of colleagues toward those of us who disclose, even though these attitudes profoundly affect our employment experiences and long-term success.

Some research suggests that disclosing autism is helpful in forming social bonds. For example, a study last year revealed that neurotypical students form more positive impressions of characters in stories who engage in unusual behavior, such as insisting on the location of a couch, when these characters are described as autistic.

Because of evidence such as this, it might be reasonable to recommend that autistic young people disclose their diagnoses in mixed school and employment settings, David Mandell, professor of psychiatry and pediatrics at the University of Pennsylvania, stated at an IACC meeting in April.

In my experience, however, disclosure has been a double-edged sword. Being diagnosed as an adult means that I have held jobs pre-autism diagnosis, post-autism diagnosis without disclosure, and post-autism diagnosis with disclosure.

Before my autism diagnosis, I was able to complete a graduate degree, but I found it difficult to obtain and maintain a job. As far as I knew, there was nothing to disclose. But I failed job interview after job interview.

I graduated from college in 2011, during a recession, which did not help. I moved home with my parents. Eventually, I got a job as an editorial assistant at a medical journal. I thought my struggle to transition to adulthood was over. I was wrong. After two weeks, I was fired for being a "bad cultural fit." When I asked what that meant, I received no further explanation.

My second full-time job was as an editorial assistant at a science news wire. By then, I'd received an autism diagnosis, but I didn't disclose. It didn't seem necessary. I hardly interacted with my coworkers and spent half of each day editing press releases. It wasn't a social office. However, the job also involved an element of customer service, which proved challenging. One angry woman demanded to know if I was a robot. My supervisor recommended I try being less scripted. He didn't know that wasn't really an option for me.

I excelled at the editing portion of the job until I got a cancer diagnosis. The anxiety caused me to lose the careful veneer I'd constructed at work. My tics become worse. Some of the ways in which I stim were disturbing to my officemates; I don't think disclosure would have made what I was doing less disruptive or distressing to watch.

I started taking more anxiety medication, which tamped down the tics but affected my cognitive performance. I was using all of my energy to sit still and had little left to actually do my job.

So, I disclosed and asked to telecommute until my cancer treatment was completed, but the company denied my request. I was told this was a privilege exclusively for senior employees. My employer developed a new impatience with my absences and errors. I resigned from the job after a little more a year to focus on my health.

Uncertain future:

At my third job, I disclosed before the job interview. I was at a nonprofit that focuses on developmental and intellectual disability research, once again as an assistant. Disclosure was helpful in some ways. People understood that when I didn't smile or talk, it wasn't a social slight.

I felt accepted and liked by my coworkers. I can perform well in an office setting, given the right accommodations. After two years and with newly gained confidence in my abilities, I left to dedicate my time to my startup, NOS Magazine, an online source of neurodiversity news and commentary. I've also had the privilege of spending more time writing and thinking about what I want out of my career. I realized that being liked isn't the same thing as being respected. It isn't enough.

Disclosing an autism diagnosis at work can hinder advancement. People's low expectations of me were noticeable. I felt stuck. After asking for a promotion after some major achievements, I was denied. Then, after further achievements, I was given a title change but no pay raise, despite the existence of pay bands. I made $5,000 less than the low end of the pay band for my new job title.

It was disheartening to be outwardly liked and praised but to never receive a real promotion.

My experience reflects that of many of my autistic friends in their 30s, 40s and even 50s, with and without intellectual disabilities. We bounce from internship to internship, or get only part-time work, are paid minimum wage or are expected to volunteer for no pay. We might get paid less than a nondisabled person with a similar background would to do the same work.

I have no idea where I might be working in 5 years, let alone 10. We need more research on long-term outcomes for autistic employees. As an autistic person, uncertainty is objectively terrifying to me, but I think it would be at least moderately terrifying for anyone to not have a vision for their future.

Sara Luterman is a freelance writer and founder of NOS Magazine, the first online news and culture site by and for the neurodiversity community. Her writing has also been published in The Guardian, Slate, and The New York Times.

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Disclosure of autism at work holds risks and benefits

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Telling coworkers you are autistic can bring acceptance, but it may also hinder advancement.

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"Autistic Masking (camouflaging) and Autistic Burnout play such an enormous role in the life of Autistic children and Autistic adults, yet they remain two of the most important aspects of an Autistic person's life. Both these areas have naturally, over time become my areas of real specialism and interest.  My work in these areas includes articles, published academic papers, academic research, videos, interviews and training."

Kieran Rose, The Autistic Advocate

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A huge range of resources designed to explain and support Autistic Masking and Autistic Burnout from Kieran Rose, The Autistic Advocate

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Visual supports are very helpful to most people, including people on the autism spectrum. They offer a stable, predictable, and (if done well) accessible form of information that can greatly assist with executive function activities, transitions, and unfamiliar situations. Here are some resources for creating effective visual supports:

General:

Why use visual supports & our top app picks (Developmental Disabilities Association)

Visual Schedules:

4 Ways to Crush It with Picture Schedules (by Neurodiverging)

Visual Schedules: A Practical Guide for Families (University of Utah)

Visual Timers

10 Free Visual Timers (A Day in Our Shoes)

4 tips for schoolwork, chores, electronics use, and exercise (Robo)

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"Autism is me": an investigation of how autistic individuals make sense of autism and stigma

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"Autism is me": an investigation of how autistic individuals make sense of autism and stigma

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Abstract

There are many different perspectives for understanding autism. These perspectives may each convey different levels of stigma for autistic individuals. This qualitative study aimed to understand how autistic individuals make sense of their own autism and experience the stigma attached to autism. The study used critical grounded theory tools. Participants (N = 20) discussed autism as central to their identity, and integral to who they are. While participants thought of autism as value neutral, they expressed how society confers negative meanings onto autism, and thus, them. The findings also indicate that different understandings of autism confer different levels of stigma. Participants expressed constant exposure to stigma and managed this stigma in different ways. Such methods included reframing to more positive understandings of autism, the reclamation of language, and using concealment and disclosure strategically. The implications of these findings are discussed further in the article.

Points of interest

Autistic research participants consider their autism to be value neutral – akin to any other feature like race or hair colour.

Participants feel that society sees their autism as being a bad trait to have.

Participants struggled with the tension in how they see themselves, versus how they believe society sees them.

Participants are caught between disclosing that they are autistic and concealing it, but feel they are treated negatively either way.

Participants use the word “autistic” to reclaim autism from stigma, and to reframe peoples understandings of autism to be less negative.

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Introduction

Autism is understood to be a neuro-cognitive condition in which autistic individuals are said to lack the ability to infer the minds of others, struggle to empathise and display extreme male traits (Baron-Cohen et al. 2009). Similarly autism is understood as a “triad of impairments” in which individuals have “impaired social interaction and verbal and non-verbal communication, and repetitive and stereotyped behaviours” (Van Wijngaarden-Cremers et al. 2014). Individuals are described as being on the autistic “spectrum” to reflect the heterogenous nature of autism (Lai et al. 2013). Neither a cause, nor a cure have been found (DeFilippis and Wagner 2016). The most extensive study to date indicates a genetic aetiology (Bai et al., 2019).

Autism has been pathologized as disease or disorder (Evans 2013). However, autistic individuals do not typically understand themselves within a model of pathology (Bagatell 2007; Kapp et al. 2013). These views are often dismissed as autistic individuals are said to lack epistemic authority - that is, the ability to contribute to knowledge formation on autism (Frith and Happe 1999; Hacking 2009a). Indeed, it has been argued that because autistic individuals are autistic, they lack the ability to produce reliable knowledge on autism (Frith and Happe 1999; Hens, Robeyns, and Schaubroeck 2019). Different ways of understanding autism convey different levels of stigma, however. Autistic individuals tend to have a reliable and scientific understanding of autism, which is also less stigmatising (Gillespie-Lynch et al. 2017). Thus, this study aims to qualitatively investigate autistic individuals’ identity and how they themselves, consider autism.

The ‘autistic person’, is not a natural category; instead it came into existence as a psychiatric diagnosis (Evans 2013; Hacking 2009b). Autism has developed under technocratic power structures (Evans 2013; Silberman, 2015) wherein the power to define the meaning of autism has been held by non-autistic researchers and medical professionals (Evans 2013). Autism has evolved from a form of mental-illness to a cognitive condition (Chapman 2019; Evans 2013). Although there is currently an emerging focus on ethical, participatory autism research (Fletcher-Watson et al. 2019; Milton et al. 2014), some research on autism has traditionally excluded and dehumanised autistic individuals (for brief reviews see Gernsbacher 2007; Cowen 2009).

While not all research on autism is dehumanizing (for example: Cage, Di Monaco, and Newell 2018a; Crompton, Fletcher-Watson, and Ropar 2019; Kapp et al. 2013), there is still a distinct history of dehumanizing autism research (Cowen 2009). Examples of pathology and dehumanization include conclusions that autistic individuals are an economic burden (Ganz 2006; Lavelle et al. 2014), incapable of having moral-selves, personhood, or community (Barnbaum 2008), are inherently selfish/egocentric (Frith 2004), have integrity equivalent to that of non-human animals (Russell 2012), lack an ability to infer the minds of others (Baron-Cohen, Leslie, and Frith 1985), are sub-human and in need of rebuilding as “proper humans” (Lovaas, Schaeffer, and Simmons 1965) and “exhibit less marked domesticated traits at the morphological, physiological, and behavioral levels” (Benítez-Burraco, Lattanzi, and Murphy 2016 p.1) which may be interpreted as autistic people being less domesticated than non-autistic individuals. Similarly, unfavourable comparisons to Great Apes (Tomasello et al. 2005), brain-damaged monkeys (Bainbridge 2008), and robots or chimpanzees (Pinker 2002) have been made. Extensive arguments supporting the use of eugenics programmes in autism have been published (Barnbaum 2008; Tantum, 2009), with exceptions being made only for those who are economically-productive, and normative enough to not make others uncomfortable (Tantam 2009, p. 219).

As autism is not a natural category (Hacking 2009b), and instead has derived meaning from non-autistic researchers who hold technocratic power (as it is the case of most psychiatric, and disability labels (Smart 2006)), one should be wary of the consequences of such narratives. These dehumanising narratives may have more influence than recognised, especially when framed as being medical and scientific (Smart 2006). Such perspectives can become pervasive within society, for example, autistic individuals are considered as having less human uniqueness (indicating dehumanisation by non-autistic people) (Cage, Di Monaco, and Newell 2018a). Autistic individuals, and advocates have highlighted the issue of dehumanising rhetoric frequently occurring in autism research, and report feeling alienated by it (Luterman 2019; Rose 2020).

Similarly, media representations (Holton, Farrell, and Fudge 2014; Huws and Jones 2011; Jones and Harwood 2009) and stereotypes of autism (Wood and Freeth 2016) are predominantly negative. Eight of the top ten stereotypes non-autistic people associate with autism are rated negatively (including autistic people as having difficult personalities/behaviour, being withdrawn, and awkward). Similarly, 67% of the media framings of autism in the United States, and Britain over 15 years had stigmatising cues (Holton et al. 2014). In both British (Huws and Jones 2011) and Australian (Jones and Harwood 2009) media, autistic people are portrayed as either dangerous/unstable, or unloved and mistreated. Thin-slice judgements of autistic individuals are more negative than those of neurotypical peers and neurotypical peers are less willing to interact with autistic individuals (Sasson et al. 2017). Both the behaviours related to autism (Sasson et al. 2017), and the label (Ohan, Ellefson, and Corrigan 2015) are stigmatised. These negative framings and perceptions of autistic people can make autistic individuals feel pressure to conceal their status on the spectrum and to camouflage as non-autistic, despite this impacting their mental health (Cage, Di Monaco, and Newell 2018a). This is not to suggest that there are no "positive" framings of autism, rather that they occur less frequently. Of the top ten stereotypes non-autistic people hold towards autistic people, only two are rated as being positive: “high-intelligence” and “special abilities” (Wood and Freeth 2016). These positively rated framings also occur in media representations of autism, and are associated with Savant-Syndrome (such as Sheldon Cooper, or Rain Man) (Draaisma 2009).

Autistic individuals are more likely to support models of autism acceptance than pathologization (e.g. neurodiversity) (Kapp et al. 2013). Neurodiversity is the concept that autism represents biological diversity in cognitive/neurological function (Singer 2017). A central tenant of neurodiversity is that autism does not necessitate suffering (Jaarsma and Welin 2012; Kapp et al. 2013; Kras 2009). Autistic advocates have continued to push back against strictly negative framings of autism, seeking some form of recognition for a multifaceted autism, in which there are peaks and troughs of ability (Hacking 2009a; Jaarsma and Welin 2012). Despite neurodiversity being framed as a rose-tinted view of autism, those who endorse it are more likely to have a balanced view of autism compared to those who supported pathologizing autism (Kapp et al. 2013). The arguments of neurodiversity, to some degree, align with the theory of autism as another “form of life” (Chapman 2019; Hacking 2009a). Form of life theory argues that autism constitutes a different form of life, rather than being a deficit of mind. That is, one cannot refer to a disorder based on an autistic inability to understand neurotypical brains, as neurotypical individuals similarly fail to read autistic states of mind, and rate them unfavourably based on reduced readability (Alkhaldi, Sheppard, and Mitchell 2019). This has been named the double-empathy problem (Milton et al. 2014).

To date, little research has been conducted on the sense-making or narratives autistic individuals have in navigating these different perspectives of autism, nor how autistic individuals understand their own autism (Bagatell 2007, 2010). Thus, the aim of this interview-based qualitative study is to use grounded theory tools to investigate what autistic people consider their autism to be, their experience of autism, and notions of autism versus neurotypicality. It should be noted that in line with the preference of autistic people, this article uses identity first language (autistic individual), instead of person-first language (Kapp et al. 2013; Kenny et al. 2016).

Method

Critical grounded theory (CGT) tools were used in the present study. Critical grounded theory (also known as critical realist grounded theory) integrates grounded theory with critical realism (Hadley 2019; Hoddy 2019). Critical realism presupposes an objective reality which exists independently of our interaction with it - however, also that all description of reality is mediated through filter of language, individual meaning, and social context (thus it is impossible to step out of perspectivism) (Bhaskar, 1997; Oliver, 2012). It is not the case that all beliefs are equally as true or false, rather that there can be truer or less true accounts of phenomenon (Oliver, 2012). Critical grounded theory tools are retroductive in nature, in that using them involves abstracting potential mechanistic pathways backwards from experiential data, to relevant objects, structures, and conditions that are thought to make these possible (Hadley 2019; Hoddy 2019). Similarly, CGT attends to individual actions through to social structure (Oliver, 2012). Grounded theory tools are underpinned by a relational standard of benchmarking that holds the researcher accountable to the researched (Charmaz, 2008; Harrison, MacGibbon, and Morton 2001). For a more detailed an explanation of CGT, please see Hadley 2019, Hoddy 2019, and Kempster and Parry 2011.

The use of CGT was central to this research because while the label “autism” may describe an underlying reality, all accounts of it have been shaped by the perspectives of those who delineated it (as described in the work by Evans (2013), and Silberman, (2015)). Further, some understandings of autism may confer more stigma (Gillespie-Lynch et al. 2017). To date, we have rarely investigated autistic people own meaning making of the nature of autism (Chapman 2019). The grounded tools employed in this study allow us access to this understanding of autism at an individual level by being situated and immersed in the data (a key benefit of grounded theory tools (Oliver, 2012)), while the critical realist application of these tools allow us to bring these individual accounts back into a wider social context of autism.

Reflexive journaling

Reflexive journaling (Janesick 2015; Ortlipp 2008) was used throughout the process. Reflexive journaling helped the researchers to make sense of our epistemic responsibility for the knowledge we produced. Epistemic responsibility refers to a process of taking responsibility for the impact of ones’ research, and for the implications of making interpretations from data (Barad 2007; Teo 2010). Reflexive journaling was used as a tool for understanding how characteristics of the researchers might have influenced the perception of participants and their experiences, and to provide a log for retrospection (Ortlipp 2008). These logs were used throughout the process of data collection and analysis to increase the transparency of the process given that understanding of phenomena is shaped by perspective (Bhaskar, 1997). Furthermore, they were also used to keep track of how the researchers’ perceptions of the data changed over time.

Recruitment process

Ethical approval was gained before recruitment. Anonymity of participants was ensured. The only participation incentive offered was entry into a prize-draw. Participants had to consider themselves autistic (both diagnosed and self-diagnosed participants were welcome to participate), be 18 years of age and have proficiency in English to participate. Participants were recruited both online and locally at the University of Surrey. Posters and digital posters were used for recruitment. Moderators of autism-based online groups were contacted to ask for permission to advertise in groups. Participants were involved worldwide because autism and how it is understood can be a culturally situated phenomenon (O’Dell et al. 2016), and the aim of the original study was to understand a more shared perspective of autistic community connectedness (we aimed for perspectives beyond a British sample). People emailed the lead researcher to participate and were sent participant information sheets. If they still wanted to participate a date/time/method of interviewing was chosen. Methods of interviewing included face-to-face, online using audio-video software, or a text-based interview (including email interview). At the beginning of the interview the participant information sheet was given to the participant for a second time before they received a consent form to sign (manually or electronically). Participants who consented continued in the study. Participants could consent for their data to be used in this study alone, or also in secondary analysis.

Sampling method

This study used purposive theoretical sampling. Theoretical sampling is an evolving method of sampling (Corbin & Strauss, 2008). Data are analysed throughout data collection and guide who should be included in the sample next. This was important for the study at hand, as the autistic community is heterogeneous and contains individuals with a wide range of communicative needs. Original methods of data collection included online audio interviews, and face-to-face interviews (twelve participants were recruited). Enquires were made by individuals who wanted to take part but would struggle with these methods. These participants did not communicate verbally, and so neither the face-to-face nor online audio interviews would work. An amendment to the methods was made to allow for a broader range of participants (an amendment to ethical review was submitted and accepted prior to changing methods of data collection). During the second stage of collection, participants could also take part via email interview that would not require the social aspects of audio or face-to-face interviews.

Participants

Twenty-two people expressed interest in participating. Two participants declined after requesting more information. One such participant withdrew after reading the participant sheet (they had concerns it might be distressing). Twenty participants were recruited for the study. Ages of participants ranged from 21-62 (Mean = 37.2, SD = 13.1). Nine participants were men, nine women, and two were non-binary. Twelve participants had a diagnosis of Asperger syndrome, three participants had a diagnosis of autistic spectrum disorders/pervasive developmental delay, one participant was undergoing assessment, and four suspected they were autistic. Thirteen participants were White British, one participant was Black British, five were White other from Europe, America, Israel or New Zealand, and one participant was mixed-race South American. Thirteen participants were heterosexual, four participants were bisexual, one participant was pansexual, and two participants left their sexuality undisclosed.

Interview method

Face-to-face interviews occurred at the University of Surrey (n = 9). Online interviews were conducted over ‘ClickMeeting’ via either audio (n = 8) or a text-message system (n = 1), and email (n = 2). Audio and face-to-face interviews were audio-recorded to allow for transcription later. For anonymity, only the participant and lead researcher were present at each interview. The duration of the interview varied (32-92 min, (Total = 15.53 h, Mean = 44.23)), (excluding three text-based interviews). Face-to-face interviews were held in one location as all the researchers were based there and did not have the means to interview a global sample in person.

As part of the data collection and analysis method, constant comparative methods (Corbin & Strauss, 2008; Kolb 2012) were used. This means that data were analysed from the point of collection, compared to other data collected, compared to the questions which were asked, and the current framework being developed. If data were emerging from multiple participants that were not reflected in the interview schedule, relevant questions were added. If emerging data did not fit within the framework being developed, the framework was reworked to remain grounded in the data.

The initial interview schedule evolved from the first interview to the last, being led what participants discussed. The original interview schedule covered three main topics: diagnosis, identity, and community. The project at the time was to investigate autistic community connectedness (Botha et al., n.d.). The study has been separated into two papers – one on stigma and identity, and the other on autistic community connectedness. Stigma was so pervasive that regardless of the topic being discussed, participants often related it back to stigma. This was done to give enough depth and detail in each paper, as the data were rich and informative.

Questions were added through the process above. The added questions included questions about stereotypes of autism, how society perceives autism, and whether participants could tell when someone else they were interacting with was autistic. Stigma was the main topic which was not asked about in the original interview schedule, but which became apparent from the data. Prompts were used where a participant had short answers.

Data analysis

Nvivo 10 and 11, were used to manage and analyze the data. The coding was done by the first author, which allowed for continuity between interviewing, coding, and analysis, across participants. In presenting the data below, names and identifying information have been changed for anonymity. All direct quotations have information for traceability. Coding was carried out according to grounded theory techniques. This means open coding, axial coding, and selective coding (Hoddy 2019). The coding process was iterative and non-linear. During open coding, each interview was coded line by line, according to people’s understandings of what they are doing and their reasons (Hoddy 2019). All transcripts were coded line by line, meaning no information was considered surplus. Tentative links were posited between participants and open codes.

Once more than three participants had been interviewed, axial coding began. Axial coding includes noticing regularities in data between participants and how they discuss events (Charmaz 2006; Corbin & Strauss, 2008; Hoddy 2019). Axial coding aims to understand the relationship between categories created in open coding. The researcher tries to notice the context in which a category exists. This is a stage of abduction (Hoddy 2019). Possible mechanisms are described. Open coding continues alongside axial coding.

During selective coding, core categories are selected and highlighted (Hoddy 2019; Kempster and Parry 2011). The relationships these core categories hold with other categories are highlighted. The data at this point are abstracted upwards into theory, related to areas of literature, and compared to other research (Hoddy 2019). This is where there is a concretisation of data and their place amongst other research and theory.

Results

Summary of overall findings

Core categories discerned were identity, and stigma. In terms of identity, participants made clear, a perceived distinction between autistic individuals and non-autistic individuals - that is, one could either be autistic or not. Participants described a tension between their own view of autism and society’s and described this tension as burdensome. Participants felt that autism was value-neutral, akin to race, sexuality, or handedness, but that wider society considers it a ‘bad’ trait. Participants expressed being caught in a double bind, recognizing that both disclosure and failure to disclose resulted in negative consequences. Participants expressed the importance of their autistic identity, stating that even if autism is not central to their self-perception, it affects their entire perception of the world. Much of the stigma management discussed by participants involved effects on their identity.

Participants discussed how they experienced stigma, infantilization, discrimination, dehumanization and powerlessness. Stigma related to gendered stereotypes of autism, assumed incompetency, and violence. Participants described stigma and stereotypes as limiting, and destructive. Participants detailed how these effects were experienced from childhood, regardless of diagnoses, and resulted in complex stigma management. Stigma management included concealment and attempts to fit in, strategic disclosure, reclamation of language and identity, and attempts to change the social meaning of autism through reframing.

Identity and autism

Participants spoke about what their autism meant to them. These discussions were framed around identity. This section will discuss how participants discussed autism, and identity. Participants views on this were surprisingly homogenous. The way participants described their experience of autism became an important backdrop for the later discussions of stigma.

All participants made clear arguments for autism as a biological, value-neutral, internal reality in which autism was inseparable from who they are:

“Autism is me” - (Emma, 40, White, female, seeking diagnosis).

“It is very much a core part of my identity because it affects everything… without it I would be so completely different, you cannot separate it from me”-(Polly, 32, female, White, British, diagnosed)

“Autism makes me who I am. Yes, autism is an integral part of who I am. It affects the way I think, communicate and socialise.” - (Carley, 21, female, White, British, diagnosed).

All participants argued that one could either be autistic, or non-autistic and that although autism itself was a spectrum, humanity was not a spectrum between non-autistic and autistic (i.e. not everyone is a “little autistic”). This is epitomised in the following quotes:

“You often get people… who might be described as neurotypical who would take some typical Asperger symptoms and say oh yes we all feel like that sometimes or we are all on the spectrum at some point, and I do not agree with that… there is definitely a marked difference between people who have some type of autism and people who do not”- (Michael, 55, white, British, male, married, diagnosed).

“I do not like the “autism spectrum” term because it invites people to say “oh, are not we all a bit autistic”.” (Olga, 55, White, female, diagnosis pending).

Most participants described autism as value-neutral, akin to height, skin colour, and handedness, asserting that any value attributed is that of society rather than of autism itself. Similarly, it was not a disease or a disorder. The following quotes show how participants considered autism as value-neutral:

“Being autistic is a person's feature, just like being tall, or short, or left-handed, or talented, or deaf, or blind, or dyslexic.” - (Abraham, 47, Israeli, male, diagnosed)

“Autism is not a disease; it’s just a different brain wiring.” - (Polly, 32, White British, female, diagnosed)

“I just think… I think neurotypical people are just typical rather than healthy. They do not see autistic people as being just on a different tack, it sees us as being wrong”. (Michael, 55, White British, male, diagnosed).

Most participants describe being acutely aware of their difference from neurotypical people from as early as they can remember (i.e. it did not come with diagnoses or labelling) diagnoses instead provided a positive avenue for identity. Regardless of this positive identity, a certain amount of internalisation of external stigma appeared throughout participants narratives, with participants describing themselves as “weird”:

“I mean, my entire life I've been “weird”. And I've never been someone who kind of fitted in. Because, I have always been that, you know, square peg in the round hole.” - (Emma, 40, White British, female, seeking diagnosis).

“Because until [being diagnosed] I viewed myself as a misfit, a retarded genius, an eccentric, a freak. I saw no future for myself anywhere. The spectrum gave me a new identity, which I view as mostly a positive identity” – (May, 35, White British, female, diagnosed).

Most participants made clear that there was nothing incompatible between being autistic and achieving personhood or the ability to thrive other than neurotypical expectations. Participants acknowledged that autism could still be a disability, but that this did not limit their capacity for a good life necessarily:

“Autistic people have the same potential for life as any other embryo or child” - (Ami, 22, White British, Female, diagnosed).

“The reasons they cite for needing a cure is not [autism] it is that we get bullied or are difficult to ‘live’ with”- (May, 35, White British, female, diagnosed).

Stereotypes and stigma

When discussing diagnosis, disclosure, discrimination, day to events, childhood, or employment, an apparent underlying theme was stigma. No matter what was being discussed, stigma seemed inescapable. All participants described always being on the outside of the neurotypical world and shunned by society to varying degrees:

“Is it any wonder we are seen as outcasts when society shuns anything marginally different from it?”- (Charlie, 29, gender non-binary, White British, diagnosed).

It is interesting how the participant described society as marginalising anything different in society, as it is not just reflective of ableism, but also applies to a wider minority status which may include non-cisheteronormative gender or sexuality for example, of which autistic people more often are.

There seemed to be an over-whelming awareness that autism is considered an inherently "bad" thing by society. Most participants discussed how the narratives we have around being autistic conveys society’s perceptions of it. The quote below demonstrates this sentiment. When asked about how the participant believes society views autism, he inferred stigma from the choice’s parents make around vaccination:

“One of the key reasons people choose not to give vaccinations to their babies is they don’t want their babies to be autistic… it kind of puts in perspective how people really feel about it. They would rather literally give their child more of a chance of getting a deadly disease than have autism. It really means [autism] is a red card. A cross in the box sort of thing”- (Andrew, 22, Black British, male, diagnosed).

Stereotypes discussed by participants included the association of autism with a complete lack of verbalness, being male, being infantile, or capable of violence. In terms of the stereotype of what an autistic person should look like, participants thought the stereotype was of a White, male, minimally verbal child.

“All they know of autism is it is children, and they don’t speak”- (Allison, 57, White British, female, diagnosed).

“A lot of the time autism is associated with cis, het, white males” - (Charlie, 29, gender non-binary, White British, diagnosed).

Participants described being dismissed because they did not fit the content of this stereotype:

[on disclosing to someone] “You are lying, you can talk…” (May, 35, White British, female, diagnosed)

At the extreme, these stereotypes can act as barriers to diagnosis:

“The under-diagnosis of girls on the spectrum, because they defy the stereotypes”- - (Abraham, 47, Israeli, male, diagnosed)

“A lot of the time, only boys and men are looked at. Stereotypes have emerged.”- (May, 35, white British, female, diagnosed)

Extreme stigma described by participants was expressed in how autism has been linked to violence. Multiple participants (7 of 20) from different regions of the world discussed their concerns that people associate autism with violence. The two quotes below summarise both this issue and how autism is pathologized in the media:

“[They see us as] troubled minds, who hack into computers and or blow up schools, school shootings… It’s rare you hear about autistic adults unless they are the ‘dangerous’ kind…”- (May, 35, White British, female, diagnosed)

“In news report… [autisms] often described as a disease or a high school shooter… mostly [I feel] annoyed, it’s discussed as a disease a disorder and in its more severe additions”- (Michael, 55, White, British, male, diagnosed).

The images of autism and violence provided by participants were usually gendered and referred to school shootings, and how every time a White, man commits an atrocity such as a shooting, the first thing that is talked about is autism.

Stigma management

Understanding stigma in a nuanced fashion involves not only understanding the impact of stigma on marginalized communities but also how those communities cope with such adversity (Goffman 1968). Unidirectional considerations of stigma acknowledge the limiting consequences of stigma; however, fail to acknowledge the communities’ ability to resist the impact of stigma. By examining the interaction stigmatized communities have with stigma-related stressors, we can understand what makes the experiences more or less impactful of the lives of those (Frost 2011a). Participants described processes of coping with stigma, such as trying to fit in or assimilate, concealing their autism, and when confident, challenging the stereotype or stigma, showing the relational aspects of autism.

Double binds: Concealment and outness

All participants expressed many situations in which they face “double binds”(Yuksel, Bingol, and Oflaz 2014). For example, participants discussed how they were “damned if they do and damned if they don’t” regarding disclosure, because they could tell people, and be judged on the label, or not tell people, and be judged on their behaviour, but either way there were consequences:

“I'm damned if I do and damned if I don't if you know what I mean…I can tell people [I’m autistic] and they think I'm weird and if I don't tell people, they think I'm weird. When I didn't behave in the way they expected me to - oblique comments were made by staff” – (Allen, 36, degree, New Zealand, White, male, diagnosed).

In terms of concealment participants discussed childhoods where they tried to assimilate, and to make themselves less “different”. Most participants described the years in which they had tried and failed to fit in as misspent. Some felt like they had had no childhood at all. The following quote epitomizes the intense pressure autistic individuals felt to assimilate, and how it never worked, making them feel like failures:

“I’ve spent my adult life trying to assimilate. No matter how I try there are aspects of that I cannot do… mainstream society shuns anything even fractionally different from it… we are told to perform a circus doggy act every single waking moment of our lives. We are told to fit in or die.”- (Charlie, 29, gender non-binary, White British, diagnosed).

“I spent my childhood trying and failing to fit in”. (May, 35, white British, female, diagnosed).

Participants discussed concealment due to stigma and stereotypes, regardless of age. Concealment and withholding were directly talked about with regards to the stigma imposed on autistic people such as withholding diagnosis because of the worry that people might associate them with violence.

“When I was diagnosed… my kids were still in primary school. I didn’t want to turn up at the school gates and have other parents go ‘oh yeah that’s the guy with Asperger syndrome’… simply because there is so much misunderstanding about what is it… suspicion almost… So yeah, I haven’t really come out as someone with Asperger syndrome…you see it all the time in news reports… some high school shooter in the USA who murders his classmates turns out to have Asperger syndrome so I have been very wary about advertising the fact especially around young children, just because I think people might react badly like ‘oh we don’t want [him] around our kids” (Michael, 55, White, British, male, diagnosed).

It was still the case, even where some participants could see a potential benefit in disclosing, participants had a distinct fear of the response others. The implications this has for receiving support may be important since disclosure is needed for support to be actioned (if necessary):

“I have a dyspraxia diagnosis and I’ve never disclosed that in the workplace, I imagine I probably could have benefited from doing so, with the autism diagnosis as well. But I am very uncomfortable with other people’s perceptions…. There’s not a lot of awareness… or positivity… I would be very apprehensive about disclosing”- (Emma, 40, White British female, seeking diagnosis).

Most participants described an unequal dynamic between themselves and neurotypical people when they did disclose. This included erasing of identity through denial, with participants being told: “you are not really autistic”. Participants expressed concern that when neurotypical people deny their autisticness they detract from their identity and self, and in turn erase their experience and needs. It could be a display of power-dynamics between autistic individuals and non-autistic individuals, because again, it removes the self-designation, reduces the meaning of the identity, label, or disability, and then also removes the need for support.

“[when disclosing] people are like, “well everyone’s a bit like that” and it’s ridiculous to think that you’re really autistic” (Andrew, 22, Black British, male, diagnosed).

Erasing the participant’s experiences as being autistic increases the distance between autistic people and neurotypicals by denying the autistic person the space to be themselves. This concept also links with the idea of relying on stereotypes in allowing for identification with the spectrum – in essence, unless you present as a stereotypical image of autism, then you are dismissed.

“It makes me feel bitter and angry when [neurotypical people] do not believe me” (Michael, 55, White British, male, diagnosed).

Reframing and reclamation: Disclosure and language as liberation

Most participants described how language is used to reinforce the place of autistic people in society, and their sub-humanness. Person-first language was described by participant’s as a form of control and a reminder that they are not generally considered to be human. This is demonstrated with the following quote:

“It is part of the dehumanization of autistic people – to have to remind neurotypical people we are human. It is condescending for person-first language people to be like remember guys… this is a person in front of you” (Polly, 32, White British, female, diagnosed).

The quote itself lays out a specific power relationship, in which it becomes the duty of autistic individuals to remind non-autistic individuals of their humanity. Similarly, in the act of telling an autistic person to reframe their language to person-first language, it implies a superordinate role for neurotypical people and a subordinate role for autistic people, even for self-identification.

Some participants describe making a challenge to the social hierarchy with language and disclosure as tools of liberation. For example, when peers are having a conversation about autism that reinforces stigma, participants might disclose being autistic in order to challenge the notions of autism being discussed.

“I mean I know that autism gets a big backlash, quite often I find myself in social situations, where I am dealing with someone I don't know too well, who would make a comment, that I think would offend someone on the spectrum and so I will sometimes just say, ‘I was diagnosed with Aspergers when I was younger, and I don’t think you should be saying something like that’” - (Ami, 22, White British, Female, diagnosed).

Others fantasize about being able to do this but worry about the consequences. This concept of disclosing to unsettle discriminatory views held by non-autistic peers is described well by the following participant when he was asked how he handles situations where he feels he is being treated differently:

“I’ve been tempted to tell people that I am [autistic], but I never have. I think people would be quite surprised that I was autistic and telling them might change how they see autism” - (Michael, 55, White British, male, diagnosed).

Participants seem to choose the language as a reclamation of stigmatized labels, to de-stigmatize them, partly through reinforcing a concept discussed earlier: Autism cannot be separated from the individual. While some participants did not have a strong preference for any particular language, most did, and most preferred identity-first language as the less stigmatizing of the two. No participants preferred person-first language, as all found it in some way demeaning. This related to two things: Firstly, that autism cannot be separated from an autistic individual:

“It is why I never use person-first language – autism is intrinsic to who I am”- (Polly, 32, White British, female, single, diagnosed)

And secondly, autism is not a bad thing and does not need to be separated from the autistic individual:

“saying it as “having autism” is not cool…it sounds like a disease” (Allen 36, White, male, diagnosed)

“using person first language suggests that autism is an inherently bad thing. When you say 'they have' it comes under the disease perspective. Like 'they have cancer… they have MS (multiple sclerosis)”- (Polly, 32, White British, female, diagnosed).

Discussion

This paper aimed to qualitatively investigate how autistic individuals understand their own autism and the place of autism in society using critical grounded theory tools. The findings give us insight into impact of stigma according to our understanding of autism. Participants believed that autism was value-neutral, and inherent to their existence. Autism was predominantly seen as an important facet of their complicated identities. Participants discussed a tension between how they see autism and how society sees it. Participants discussed stigma and stereotypes as destructive to their identities and lives. Stereotypes associated with autism included autism as a gendered phenomenon, violence, and Whiteness. Participants discussed different methods of stigma management and how and when they employ them. These were processes of concealment, disclosure, reframing and reclamation. This discussion aims to integrate these findings with research and to highlight the importance of these findings.

Autism is defined by participants as something that affects their interaction with the world, making it something that cannot be separated from them; this narrative is in line with literature autistic advocates publish (Brown 2017). These framings show a close relationship between autism and identity. It similarly gives a narrative explanation as to why autistic individuals tend towards neurodiversity (Kapp et al. 2013). Neurodiversity treats autism as more value-neutral than medicalised models of autism (Jaarsma and Welin 2012).

Participants rejected the idea that suffering was inherent to autism, as some research has hypothesized (Barnbaum 2008; Mikami et al. 2009). Instead, participants described autistic suffering as a product of not being neurotypical in a world that demands it, resulting in isolation, discrimination and victimisation. This gives credence to the idea that autistic individuals constitute a minority group (Walker 2012), and are affected by processes of minority stress (Botha and Frost 2020) and minority-majority group processes (Botha and Frost 2020; Cage, Di Monaco, and Newel, Matthews, Ly, and Goldberg 2015; Sasson et al. 2017). Participants, in expressing the discreteness of neuro-types (being autistic versus non-autistic), acknowledge that they themselves are different, but that society marginalizes everything that is different, and this is where the issue lies.

Participants discussed a general sense of stigma existing around autism, but also specific encounters that were stigmatizing. When discussing diagnosis, disclosure, discrimination, day to events, childhood, employment, an apparent underlying theme was a stigma. No matter what was being discussed, stigma seemed inescapable. Traditionally autistic individuals have been described as lacking psychological awareness of ‘others’ and the self (Williams, 2010). However, the current study shows what appears to be a distinct awareness of participants that they are afforded less space in society, and that they carry a label that society deems unacceptable. One of the clearest images of stigma was how one participant described it as a ‘red card’ or a ‘cross in a box’ that separates him from other people, specifically due to how other people construct autism.

The majority of the stereotypes held about autistic individuals are negative (Wood and Freeth 2016). Autistic individuals have reported a sense of feeling trapped by the stereotypes non-autistic people hold of them (Treweek et al. 2019). This was further supported by the data in this study. Participants described a current social hierarchy in which autistic people were subjugated, judged, undervalued and erased. Similarly, participants reported changing their behaviour as a result of stereotypes. This finding is not unique to this study, being seen even in play scenarios between autistic and non-autistic children, where non-autistic children take leadership roles and express dominance over autistic children (Bauminger et al. 2008).

The most frequently mentioned stereotypes were that autism was a ‘male’ thing, that autistic people were capable of violence, and of autism as a ‘White’ disorder. Similarly, participants mentioned frequent stereotypes of autism, such as autistic people being difficult, angry, awkward, and less often a genius (Wood and Freeth 2016). It is interesting that the only time a participant did mention the stereotype of genius, they prefixed it with the term “retarded”, juxtaposing a "positively" rated stereotype of autism with a term which heavily stigmatising (Nash et al. 2012). Moreover, that they had internalised these stereotypes to explain themselves, until they had alternative language for their experience (at which point they were no longer these things, but rather, they were autistic).

The concept of autism as “extreme male brain” (Ridley 2018) may contribute to gendered ideas of autism, as it reinforces the idea of autism being or presenting as gendered. However, there is no substantial evidence for brains being biologically constituted for what Baron-Cohen considers “sex-specific” tasks (Krahn and Fenton 2012). A meta-analysis found that for every cis-gendered female in an autism study, there were at least four cis-gendered males (Lai et al. 2012). This research is then used to develop our knowledge and theories of autism, and measures, including creating diagnostics from these predominantly all-male samples. Measures of autism then have become hyposensitive in detecting autism in women (which is a limitation frequently mentioned in papers (Baron-Cohen et al. 2009)). This has become so imbedded in the stereotype and associated autism, that it affects the everyday experiences of autistic individuals.

The “extreme male brain” appears to also shape ideas of autism beyond women and girls. The association between autism and traits which are gendered in society, including violence and aggression are carried forward to their extreme (Krahn and Fenton 2012). Yet, both objective and subjective measures of perpetration of crime are equal between autistic and non-autistic individuals (Im 2016; Weiss and Fardella 2018). By creating the idea of the “extreme male brain”, researchers not only further linked autism with an incapacity for empathy, but also reinforced an idea that men cannot empathize to the degree that women can. Similarly, it creates a complicated stereotyped landscape for ethnic minorities to navigate, as violence and aggression are not only gendered concepts, but also typically attached to Black individuals (Wilson, Hugenberg, and Rule 2017).

Participants made clear that they navigated situations of double binds. Participants balanced between whether to disclose (or not), acknowledging that either way they will suffer consequences. Concealment may have implications as a cognitive burden due to fear of discovery, while outness may result in increased exposure to discrimination (Frost 2011). With regards to autism, these findings are supported by evidence that both the label (Butler and Gillis 2011; Matthews, Ly, and Goldberg 2015) and behaviour (Sasson et al. 2017) of autism are stigmatised. This means regardless of disclosure, participants experience stigma. Furthermore, it is supported by evidence that both concealing (Cage, Di Monaco, and Newell 2018a) and outness (Botha and Frost 2020) have negative implications for mental health in the autistic community. Participants discussed navigating these double binds, in terms of access to support, versus stigma. The weight of stigma appeared to out-weigh the perceived benefits of disclosure resulting in concealment.

The distinction participants drew between being autistic and not (as discrete categories) may have important implication for the ways in which autistic people manage stigma. Stigma theory suggests that where categories are discrete and impermeable, members of socially disadvantaged category will try to elevate the standing of that category (Tajfel and Turner 1979). Thus, the focus becomes elevating the social status of the group (Tajfel and Turner 1979), which is exactly what neurodiversity gives autistic people an avenue towards (Jaarsma and Welin 2012; Kras 2009) .

There are concerns that concealment of stigma leaves the stigma unchallenged (Wang et al. 2017). Similarly, by not challenging stigma, it may become internalized or attached to the self (which was identified in the data). It may also be the case that concealment and internalized stigma have a reciprocal relationship. For example, studies have found positive, moderate to large correlations between internalized stigma and concealment in both the concealment of autism (Botha and Frost 2020) and mental illness (Lattanner and Richman 2017).

Reframing and linguistic re-appropriation are both methods of stigma management (Wang et al. 2017) that were discussed by participants. According to labelling theory, being assigned a label can result in the acquisition of stereotyping or stigma as a label infers certain beliefs and behaviours (Link and Phelan 1999). Labels, however, are not static but rather dynamic human creations (Hacking 2006). One could argue that the label of autism has ‘accumulated’ stigma (Ohan, Ellefson, and Corrigan 2015). In the case of autism, the label was created to give meaning to external behaviours observed in a subset of people by individuals with authoritative voices (Chapman 2019; Evans 2013).

Reframing can be seen on both a community and individual level in these data and in research in general. The neurodiversity perspective relates to a more balanced rather than strictly negative perspective of autism (Kapp et al. 2013). The aim of neurodiversity as a movement similarly, is said to be to shift researcher and community focus away from a strictly deficit-based model, at a group level. Participants practice a casual reframing through conversations at an individual level; when participants were faced with stigmatizing comments, they either disclosed being autistic, or considered doing so, specifically to show that autism can be a positive identity to reframe how people thought of autism.

Similarly, participants discussed language reclamation (Brontsema 2004). Language that has been used as pejorative based on the specific qualities of a minority community is reclaimed by that community and repurposed to mean something other than character damnation (Brontsema 2004). Reclamation of pejorative terms has been shown to increase feelings of power and weaken the labels stigmatising force (Galinsky et al. 2013). This has happened in the queer community (Brontsema 2004), and the disabled community (Baglieri and Shapiro 2012). Participants discussed reclaiming the term “autistic”, and refusal to bow to the terms that non-autistic individuals thought they should use. Participants rejected person-first language with the argument that they should not be required to remind people of their humanness, and to increase the salience of their autistic identity.

Autistic individuals may be managing stigma by reclaiming language. Considering the unfavourable comparisons that have been made between autistic individuals and animals, robots, or sub-humanness, it makes sense that part of the process of de-stigmatisation includes reclaiming autism and redefining the connotative meaning associated. Participants used identity-first language because they do not consider autism to be negative; thus, it does not need to be separated from them. This process may be important as self-designation results in feelings of increased power, as it has been found in other research (Wang et al. 2017).

Limitations

A key limitation of this study is that the original interview schedule was not made with a focus group of autistic people. It would have been beneficial to begin this process with the input of a group of autistic people. Similarly, the interview schedule was not tailored specifically to the topic at hand (although it adapted with incoming data), as it was originally for a separate project, with questions mainly focused on community connectedness.

A second limitation of the study was the restricted period in which it was carried out as grounded theory studies are time and work intensive. It is hard to do justice to the entire body of data collected in the study and gives the researcher an inordinate amount of power in deciding what is relevant

Lastly, although our methods of data collection were wide and varied, allowing us the opportunity to interview participants who do not communicate in conventional ways, we did not interview anyone who had disclosed a co-occurring learning disability. Due to the recruitment methods employed in the study, the sample was biased towards autistic people who could read. Furthermore, co-occurring conditions were not screened for, or used as exclusion criteria. Despite some methods of data collection allowing for a spread of participants geographically (by interviewing over internet via email and a text-based message system), the face to face interviews only occurred in one country (England) which may have implications for the results, (having said that, all methods of interviewing yielded similar levels of detail).

Reflection

Reflexive journaling was used a tool to increase self-awareness during the process of data collection, analysis and during creation of this publication. Reflexive notes were made before and after each interview and were referred to. The use of reflexive journaling throughout the process made clear that this research is bourn of a specific context. Elements of insider-outsider status, power, and privilege, all played a role in the construction of the results, and their interpretation. As has been mentioned, the lead researcher for this project is also autistic, meaning a shared identity with participants (referred to as insider status (Perry, Thurston, and Green 2004)). On one hand, this intimate knowledge of the experience of autisticness allowed for a more intimate understanding of what it means to be autistic, which has been described as missing in autism research (Chapman 2019). However, it also means that perhaps a non-autistic lead researcher would have interpreted the data differently. Some participants knew the researcher was autistic (either because of their previous work, or because they enquired), whilst others did not. In order to avoid forced intimacy, the lead researcher only revealed their identity if asked. This was done, as it was a concern that if the lead researcher unduly disclosed their autism that participants would disclose more than they might otherwise.

Reflexive journaling also allowed for me (the lead researcher) to grapple with the power I had in describing the data (as interpretation of data is an action which with consequences (Teo 2010)). Participants also discussed the power that researchers had in autism research, and how there is a tradition of the autistic ‘subject’. As such, in the full qualitative project (including this study), every sentence from every participant was coded. This was done to relinquish some of the power that I had as a researcher. It was also done, as reflexive journaling revealed that as lead researcher, I did not relate to each participant in the same way, and as such, it was better to try incorporating everyone’s experience, regardless of relatability.

The use of CGT (Hadley 2019) was ideal. Using CGT tools such as theoretical sampling and the constant comparative approach (adding more questions in according to incoming data), allowed us a chance to remain grounded in participant narratives and experiences, as did open coding “according to people's understandings of their experiences” (Hoddy 2019). The “critical realist” approach, furthermore, allowed us an understanding of how autistic individuals make meaning from their autism (and how ‘autism’ is filtered through perspective and language), without devolving into a relativist idea of autism. This was particularly important as the original goal of the project was to understand a shared phenomenon (community connectedness), rather than an individual (or relative) experience. Lastly, the concretisation and contextualisation of data within pre-existing literature (a key part of critical realist projects), allowed us to abstract potential mechanisms of how autistic people manage stigma, using language and reframing. This means we abducted from everyone’s own understanding of themselves, and their situation (from open coding), up into the social context of autistic lives.

Directions for future research

More research could be conducted on mechanisms of coping with stigma in the autistic community, such as investigating the effects of different stigma management techniques on mental health, and minority stress in the autistic community. Similarly, group level coping should be further investigated. For example, community as a resource, or community level reframing, like neurodiversity. Finally, more research is needed on linguistic reclamation in the autistic community, as identity-first language is described as less stigmatizing, re-humanizing, and empowering. Research has found reclamation may be a powerful tool (Wang et al. 2017), and it may be similar in this circumstance.

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Full article: “Autism is me”: an investigation of how autistic individuals make sense of autism and stigma

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There are many different perspectives for understanding autism. These perspectives may each convey different levels of stigma for autistic individuals. This qualitative study aimed to understand ho...

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Dr. Emma Goodall will talk about how interoceptive awareness can be used to build inclusion whilst supporting a decrease in behaviour that challenges self or others. Dr. Emma Goodall is an autistic adult and autism researcher, author, consultant and education professional.

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Understanding Autistic Thinking and Interoception for Greater Inclusion and Well-Being

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Social StoriesTM is an evidence-based method that can be helpful to autistic students/clients but only if you understand how write stories that affirm people as they are and respect their autonomy. Excerpt from Neuroclastic blog about how Social Stories are often misused: https://neuroclastic.com/2020/12/04/social-stories-for-autism/ (Please read this article in full)

🤔 What are Social Stories TM? https://carolgraysocialstories.com/social-stories/what-is-it/. Watch Carol Gray's video presentation and read the modules on its history, philosophy, and guidelines on how to write Social Stories.

✍️ Take the Social Stories Quiz. You can check your answers and to read about the rationales of the answers.

✅ Here are some samples of Social StoriesTM. These are NOT meant to be generic templates. You should always write Social Stories tailored to children and their situations with the help of the people who really understand them.

"Social StoriesTM, as they were originally intended by Dr. Carol Gray, have very specific criteria and are supposed to be individualized to the learner so that the narrative has a specific person as the main character; however, most people have taken the idea of social stories and have created generic social stories to be used with autistic kids– often to modify behavior. This was not Dr. Gray’s intention, and social stories used in a way that is well-informed could be very effective in helping reduce uncertainty." In this article, the author, Terra Vance argues that Social Stories should be used with a whole class or group of children, not just the autistic child. They go further to advocate for Neurodiversity Stories as being even better than Social Stories: https://neuroclastic.com/2020/12/09/better-than-social-stories-free-download-a-room-for-us-all/?fbclid=IwAR04rv6a00tRCjOT5ifMKH5rebh0oqWDuB6xj1WnmGZbaqWXUVtl4U78-Os

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Autism Self-Diagnosis is valid and here's why

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Autism Self-Diagnosis is valid and here's why

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Autism self-diagnosis is valid and here's why:

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Autism self-diagnosis is valid and here's why: https://t.co/tjwSUNDFxt

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Autism self-diagnosis is valid and here's why: pic.twitter.com/tjwSUNDFxt
— Bex Ollerton (@Schnumn) April 26, 2022

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Autism self-diagnosis is valid and here's why: https://t.co/tjwSUNDFxt

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Autism self-diagnosis is valid and here's why: https://t.co/tjwSUNDFxt

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Autism self-diagnosis is valid and here's why:

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Small Talk (a.k.a. Phatic Communication)

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Small Talk (a.k.a. Phatic Communication)

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https://www.autismmatters.org.uk/blog/why-autism-and-small-talk-are-polar-opposites

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https://www.youtube.com/watch?v=3-zq8r-igAo

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Don't Judge by Facial Expressions or Tone of Voice

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Don't Judge by Facial Expressions or Tone of Voice

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"If you’re a neurotypical person, you may wonder, if you can’t judge an autistic person’s intentions by their facial expressions and tone of voice, what can you use as an accurate barometer?

Our words."

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If you're a neurotypical person, you may wonder, if you can't judge an autistic person's intentions by their facial expressions and tone of voice, what you use as an accurate barometer?
Autistic Emotional Expressions Look Different Than Neurotypical Expressions
Many autistic people have what non-autistic people describe as a "flat affect" of the face and voice. This may mean that even if we feel a strong emotion, our facial expression and tone of voice will remain blank and/or monotone respectively, which can be confusing to the neurotypical observer who relies primarily on non-verbal communication.

Conversely, we may also have facial expressions and tones in our voice that make us seem bored, sad, or even angry when we feel perfectly content.

Having neurological differences that make our facial expressions and tone of voice seem to contradict our internal environment can be frustrating for you, the neurotypical employer, and us, the autistic person who isn't aware of how we're being perceived until someone has a sudden emotional reaction to it.
I Don't Know What My Face or Tone of Voice Conveys
For me, one of the most confusing aspects of being autistic in a neurotypical world is when people react suddenly to my facial expression or tone of voice as though I meant to insult them, or I was trying to "say something" with my face or voice that contradicts my words.

It took me a very long time to realize just how nuanced neurotypical communication is and how much of it relies on the non-verbal. I had to take the time to learn about facial expressions and their meanings through books and online resources.

I also started recording myself to see and hear what other people were reacting to.

When I have an emotion, I my facial muscles making the corresponding facial expression, and I the right tone in my voice, but when I played back those recordings of myself, I was absolutely floored to realize that what I thought I was conveying wasn't even to what was coming across.

That's when I realized how vital it was to inform people to listen to and believe my words.
Sudden Reactions to Perceived Emotions Causes Mistrust
If you're a non-autistic supervisor, and you catch your autistic employee staring at you with what you perceive as an angry facial expression, you may irritatedly say, " Hey, what's the problem?"

In reality, your autistic employee may have been frowning in deep concentration and didn't even realize that you were in their line of sight. Because of this, you loudly asking, " Hey, what's the problem?" would be startling and confusing.

It's the same with tones of voice. Let's say you ask for feedback on an idea you've presented in a meeting, and your autistic employee says, " I agree with you" , but their vocal tone sounds flat. Due to this, you may mistakenly believe that your employee thinks the exact opposite. This may cause you to say something along the lines of, " Well, I don't appreciate your sarcasm."

From your autistic employee's perspective, however, your reaction would make no sense. They meant exactly what they said and have no idea how you're perceiving their vocal tone because they don't hear it the way you do.

When these types of misunderstandings continue for too long in an office setting, it creates a hostile work environment where repeated emotional reactions come "out of the blue", causing your autistic employees to mistrust you.
How to Ask Your Autistic Employee About Their Feelings and Intentions
This is how I advise non-autistic people to approach autistic people about their emotions and intentions, regardless of their relationship to the person:
1. Start with mentioning your observation.
If your autistic employee's facial expression or tone of voice doesn't seem to match their words, explain what you're observing before doing or saying anything else because chances are, they won't know what you're reacting to without an explanation.

" I noticed you were looking over my way with a frown on your face."

" You said you're interested in working on this project, but your vocal tone sounded flat."

2. Explain how you perceive what's happening.
Once you've explained your observation, explain how you would perceive the facial expression or vocal tone coming from a neurotypical person. " When someone looks at me for a long time and frowns, I think they're upset with me or judging me. Is that true?" or " When a person's vocal tone is flat, it usually means they are bored or disinterested. Is that true?"
3. Listen for understanding.
Listen carefully to the autistic person's perspective. You may discover that the person who was "angrily staring at you" was in intense thought and didn't even see you, and the person you thought was "disinterested" was interested but has a difference in their natural vocal tone.
4. Believe the words.
I can't stress this enough, believe an autistic person's words. If you ask us about our emotions or intentions directly, we'll most likely be 100 percent upfront with you and grateful that you asked because many people do not; they simply react and make our environment uncomfortable, unsafe, and confusing.

The better you understand autistic communication and the neurological differences that come with being on the spectrum, the more likely you are to create a safe and inviting work environment for all of your employees.

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Don't Judge Your Autistic Employee's Intentions by Their Facial Expressions or Tone of Voice

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If you're a neurotypical person, you may wonder, if you can't judge an autistic person's intentions by their facial expressions and tone of voice, what you use as an accurate barometer? Autistic Emotional Expressions Look Different Than Neurotypical Expressions Many autistic people have what non-autistic people describe as a "flat affect" of the face and voice.

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Eye Contact Explained by autistic people

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Eye Contact Explained by autistic people

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https://themighty.com/2016/02/why-eye-contact-can-be-difficult-for-people-with-autism/

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People With Autism Describe Why Eye Contact Can Be Difficult

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Stiegler, L. N. (2015). Examining the Echolalia Literature: Where Do Speech-Language Pathologists Stand? American Journal of Speech-Language Pathology, 1-13. doi:10.1044/2015_AJSLP-14-0166

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Bottema-Beutel, K. (2020). Understanding and addressing social communication difficulties in children with autism. In G. Vivanti, K. Bottema-Beutel, & L. Turner-Brown (Eds.), Clinical Guide to Early Interventions for Children with Autism (1st ed. 2020.). Springer International Publishing. https://doi.org/10.1007/978-3-030-41160-2

(Shared with permission from the authors)

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Speech-Language Therapist & Autistic Advocate

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I advocate and campaign for radical changes in therapy practices for Autistic individuals through public speaking, training, and education in order to transform the way professionals assess and support Autistic children and young people. My core values which I bring to my work are courage, compassion, and authenticity.

Autistic children do not have social impairments. I do not provide interventions based on behaviourism, flawed theories and outdated research which perpetuate the stigmatising narrative that Autistic people are broken and need fixing. I do not support Social Skills Training which is designed to teach Autistic children to mask, rehearse scripts and perform a set of socially expected behaviours which are entirely built upon neuronormative social norms.

As a pro-neurodiversity SLT I focus on helping the person advocate for themselves through their chosen method(s) of communication. I support them to communicate their choices, views, boundaries, emotions, and decisions. I give the person full autonomy to select their own goals e.g. if they want to learn how to make friends with people who share similar interests (who accept them for who they are), how to repair communication breakdowns. I help them to identify their unique communication strengths & needs using neurodiversity-affirming language. I use trauma-informed approaches which take into context the historic marginalisation and exclusion of Autistic people. which considers the accumulation of sensory, interpersonal, and emotional trauma. I prioritise emotional safety and collaboration over anything else.

To empower Autistic children / adults through:​

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Autistic SLT | Emily Lees | Empowering autistic children

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I'm an autistic Speech and Language Therapist in the UK . My goal is to empower autistic children and adults through - accessible information, lived experience of being autistic, expertise of Speech, Language and Communication, promoting a pro-neurodiversity paradigm that respects autistic communication.

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Recognizing and Resisting Ableist Language in Schools

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Recognizing and Resisting Ableist Language in Schools

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Bottema-Beutel Kristen, Sasson Noah J., McKinnon Rachael, Braun Caroline, Guo Ruoxi, Hand Brittany N., Kapp Steven K., Espinas Daniel R., Bailin Aiyana, Lester Jessica Nina, & Yu Betty. (n.d.). Recognizing and Resisting Ableist Language in Schools: Suggestions for School-Based Speech-Language Pathologists and Related Professionals. Language, Speech, and Hearing Services in Schools. https://doi.org/10.1044/2024_LSHSS-24-00036. (Download article)

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Bottema-Beutel et al. 2024_Resisting ableist language in schools