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Chapter 2: Why do people with Autism talk so loudly?

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Chapter 2: Why do people with Autism talk so loudly?

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"When I’m talking in a weird voice, I’m not doing it on purpose. Sure, there are some times when I find the sound of my own voice comforting, when I’ll use familiar words or easy-to-say phrases. But the voice I can’t control is different. This one blurts out, not because I want it to; it’s more like a reflex."

Higashida, Naoki. The Reason I Jump (p. 8).

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Chapter 3: Why do you ask the same questions over and over?

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Chapter 3: Why do you ask the same questions over and over?

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"It’s true; I always ask the same questions. “What day is it today?” or “Is it a school day tomorrow?” Simple matters like these, I ask again and again. I don’t repeat my question because I didn’t understand—in fact, even as I’m asking, I know I do understand."

Higashida, Naoki. The Reason I Jump (p. 10)

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It is not uncommon for children to ask excessive questions to help them understand and learn new concepts. This section gives further reasons as to why this might happen and ways to support understanding.

Toby always asks lots of questions, often repeating the same question over and over again even once you have answered him. Usually the questions are about what is going to happen later in the group.

Why is this happening?

There are several reasons why a child might ask questions repeatedly, depending on individual differences and varying situations. Children with ASD thrive on predictability, and repetitive questions may be another expression of this preference. Sometimes it can be an attempt to communicate something that may be new or difficult to put into words. It can be a way to avoid questions or verbal exchanges that are outside of the child's comfort zone.

It can also be a coping strategy when faced with uncertainty or stressful situations (Winters, 2015), a way to gain attention or an attempt to mimic conversation heard previously. It is also an instance of echolalia, in which children have learned to ask a particular question that seems relevant to the setting. For example, in the car, the child may ask "Where are we going?" though this is not necessarily a request for information.

What can I do?

Using a visual schedule for the group is a great way to set out the expectations and events for the day.

Use a felt board and a series of pictures that represent different activities and set them in chronological order.

Pictures should include things such as toilet breaks, morning tea time and home time.

A picture can be taken off the board to present to individual children who need extra prompting when transitioning between activities.

Play activities

Have children help remove the pictures and place them into a "finished" box as each activity is completed.

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Understand And Manage Excessive Questioning In Autistic Children

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It is not uncommon for children to ask excessive questions to help them understand and learn new concepts. This section gives further reasons as to why this might happen and ways to support understanding. Toby always asks lots of questions, often repeating the same question over and over again even once you have answered him.

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Chapter 4: Why do you echo questions back at the asker?

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Chapter 4: Why do you echo questions back at the asker?

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"Firing the question back is a way of sifting through our memories to pick up clues about what the questioner is asking. We understand the question okay, but we can’t answer it until we fish out the right “memory picture” in our heads."

Higashida, Naoki. The Reason I Jump (p. 12)

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Staff Report, FOCUS Therapy

When a child with autism is first learning how to speak, it's often delayed and it may not develop in the same way as typically functioning children. As your Fort Myers speech therapist can explain, many begin by copying words they hear, as opposed to trying out new words or phrases they generate on their own. This type of "echoing" is clinically referred to as "echolalia," and it's often a vital first step in verbal communication.

Echolalia is the exact repetition or echoing of sounds or words. A child with autism will often use words in the same order - and sometimes even in the same tone - as what they hear, be it from another person or in a book or television show.

Although it may not have any communicative meaning (there is a difference between functional and non-functional echolalia), it can be an excellent place for your speech therapist to begin work with your child on meaningful communication.

Repetitive speech is a very common part of speech development, and just because your child displays it doesn't necessarily mean they will be diagnosed with autism spectrum disorder (ASD). In fact, many children will go through a stage of echolalia when they are learning to talk. However, most typically developing children complete that stage by the age of 3. As the U.S. Centers for Disease Control and Prevention ( CDC) reports, echolalia can be a possible red flag for autism, when taken in conjunction with other signs and symptoms.

It was once thought that echolalia served no purpose. However, studies over the last several decades have shown that indeed, echolalia can help serve some important functions.

Specifically, it can give the child time to process what is being said and determine a response. It can also serve as a means to engage in conversational turn taking. For instance, if you ask your child, "Do you want some juice?"and receive the immediate response of "Do you want some juice?" - even with the same inflection - it could be your child's way of answering in the affirmative. In some cases, echolalia can be a form of self-soothing/ stimming in times of stress.
Immediate Echolalia
As noted by researchers at Indiana University Bloomington's Indiana Resource Center for Autism, immediate echolalia involves a repeated phrase or utterance echoed or produced almost right away after they are heard.

From a functional standpoint, the theory is immediate echolalia can give a child with autism and/ or comprehension difficulties a way to maintain social interaction. Your child's speech therapist in Fort Myers can use this to help your child with things like turn-taking, requesting, answering questions and self-regulation.
Delayed Echolalia
This is when the repetition of speech happens at a later time, and it could be delivered with or without communicative intent. Speech therapists will sometimes refer to this as "scripting."

Functionally, delayed echolalia can help a child non-interactively with self direction and rehearsal, and interactively with turn-taking, requests, protests, affirmation and gaining attention.
Treatment of Echolalia
At FOCUS Fort Myers, our speech therapists have a number of ways we can approach and use echolalia. We can start by giving the child words they don't have and either prompting or modeling the correct way to say things, request or respond.

For instance, we may ask the child, "What color is the cup?" and then immediately follow up with, "It's a red cup." Or we could ask, "Do you need help?" and immediately follow up with, "I need help, please," followed by, "Ok, I'll help you."

The exact approach your speech therapist uses will depend on the individual goals for your child. If you are concerned about your child's echolalia, ask for a free initial consultation with a speech therapist at FOCUS.

FOCUS offers pediatric speech therapy in Fort Myers and throughout Southwest Florida. Call (239) 313.5049 or Contact Us online.

Additional Resources:

Functional Categories of Immediate Echolalia, By Beverly Vicker, CCC-SLP, Indiana University Bloomington

More Blog Entries:

Study: Speech Delay May be Caused, Worsened By Excess Screen Time, June 19, 2017, FOCUS Speech Therapist Blog

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Speech Therapist Answers: "Why Does My Child With Autism Echo Words and Sounds?" - Focus Therapy

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Staff Report, FOCUS Therapy When a child with autism is first learning how to speak, it's often delayed and it may not develop in the same way as typically functioning children. As your Fort Myers speech therapist can explain, many...

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Chapter 6: Do you find childish language easier to understand? 

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Chapter 6: Do you find childish language easier to understand? 

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Children with autism are also growing and developing every single day, yet we are forever being treated like babies. I guess this is because we seem to act younger than our true age, but whenever anyone treats me as if I’m still a toddler, it really hacks me off.

Higashida, Naoki. The Reason I Jump (p. 16)

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by Debra Muzikar

A couple weeks ago my Facebook friend Stefanie shared with me this audio clip she recorded on her I-phone.

Stefanie just turned 49. In the audio clip you can hear her neighbor (who has known her since she was a child) talking to her as if she is three years old. Of course Stefanie was offended! Who wouldn't be?

When Kevin was 8 and was in second grade he had an "inclusion specialist" who insisted on talking to him in this same sing-songy baby voice. She'd talk to the other kids in a normal, respectful manner. I tried to convey this was not healthy for Kevin, yet the baby talk continued. In Special Education, best practice is to assume competence. Yet I've heard from so many that baby-talk is prevalent.

A couple days ago Carissa P, 16 years old autistic, shared the series of cartoons below:

When I queried my Facebook friends I found this to be a sore point among many.
Many Autistic people experience baby talk
"I do mind if someone starts taking to me like if I was 2 years old when they find out I have autism... Soooooo annoying..Yes I have autism, but I also have a 4.0 in University. Just because we have autism does not make us stupid. However I can't get mad at the person that talks to me like a 2 year old, because he/she is just ignorant about autism, most don't mean to be rude," Dani Bowman, Autistic

"That kind of thing comes out of the institutions and the misconception of baby talk vs. slowing down a bit and speaking more simply," Andy Dreisewerd, Autistic

"I hate when people do this! I see therapists doing it with clients we share, especially non-speaking clients! I have also experienced it minimally, but more as a woman than as an autistic adult since not everybody who I see randomly knows I'm autistic," Annette Sugden

"I dislike it, immensely. I'm 38 years old..not months old. I have a more expansive vocabulary than these people do ... and they want to talk DOWN to me? I'm autistic, not an infant," Heather Johnson

"[Neri was] 16 YEARS OLD at summer camp [where the camp counselor sang] ... BINGO THE DOG song. I removed him from camp and the year after asked the system to pay for him to be at the Gateway Art Studio," Nirith Avraham, parent

"I get people talking down to me in baby talk as I have a developmental delay and its so annoying... Sadly I've gotten used to it and I don't bother lecturing people anymore about it as its pointless. They don't listen. Even my job where I work as .. a cleaner they talk to me like a baby and I am 36 yrs old not 36 months old. They treat me like I am a toddler ... like I know nothing," Debbie Ann

"My kids have told me they get really upset when they're talked to that way and it makes them feel like there being talked down to," Veronica Banchs, parent

"My personal favorite worst that always happens when I take Jeremy to the hospital: the nurses and doctors speak loud and slow, even after I explain 'Jeremy has autism, but he understands everything -he graduated from high school. But he has sensitive hearing, please speak quietly.' I want to say 'Which part of please speak quietly did you not understand?' Perhaps I should start saying 'Use your inside voice,'" Chantal Sicile-Kira
Don't assume incompetence
"This reminds me of the movie Wretches & Jabberers with Larry Bissonnette and Tracy Thresher, two assistive-communication-device-utilizing adults on the spectrum.
One of the most profound moments in the movie, at least for me, is when Tracy shared some extremely advanced, enlightened, metaphysical thoughts, and it became apparent that not only was he not 'cognitively delayed'.....but extremely intelligent, evolved, compassionate and empathetic, regardless of having lead a life of being marginalized and misunderstood," Kathleen Tehrani, Autism Brainstorm founder
People change when they know you have autism
"I always notice a change in how people talk to me after I have just given a speech on my autism. Some then do not approach me to ask questions as they feel it might be too much for me. Best way to deal with this is to talk about it. Keep reminding people that there is no need to act like this and why. Elijah [Gee's son] is often treated as if he cannot hear or even worse as if he is not there at all. Be patient with people. They do not know it any better. This is why talking about autism is so important...talking with people...getting together...getting to know each other...I find this more important than lighting up buildings blue for one day," Gee Vero, Autistic
Sometimes parents are the problem
"What you are describing is unacceptable, period! To play devil's advocate here ... often when I speak to a child or adult [with their parent present] as if they understand everything I am saying in a very grown-up manner (which I do 'as if'), parents 'jump in' to answer, correct, save or otherwise without giving time for the person to answer or (when no language is present, especially) react. This is the conundrum for me," Keri Bowers, parent
Degrading behavior may becoming from a place of kindness and ignorance
"They don't mean to be ignorant or mean... they really should know better. My mom says that older people ... it's just how it was back then," Stefanie Sacks, Autistic

"It's probably ignorance rather than malicious. I've heard people talking loud to blind people," Lenny Schafer, parent

"[It's] mostly ignorance," Denise Angele, parent

"Many people talk baby talk when they are trying to be gentle and loving, don't be too hard on them. Mom was a paraplegic and many people talked baby talk. She was a very gentle soul and talked right back at them with baby talk, their language, not hers. Being kind was easier than trying to educate," Susan Ramos Calderwood Spadaccini
A sense of humor helps
"To their credit, my parents never spoke baby talk to us on principle. However, when I couldn't process a list of directions, she [my mom] would...slow....down. My response, which works to this day, was, "Why. Are. We. Talking. So. Slowly?" I lucked out. Both of my folks, now in their eighties, have retained wonderful senses of humor," Carol Greenburg, Autistic

Baby Talk is better than ignoring

The lesser of two evils is baby talk, in my humble opinion. I watched my son Kevin being ignored for many years. At least when people talk in baby talk they are trying to engage the person.

***

Cartoon artwork courtesy of Carissa Paccerelli aka Rissa P. Visit her art on her website.

See also Understanding the Spectrum: A Cartoon

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Baby talk - why do people talk to #autistic adults and children like they are infants

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Treating people on the ASD spectrum as if they are hard of hearing or infants is insulting and demeaning. The comic strip in this blog by Carissa P who is a teen on the autism spectrum depict how insulting it is.

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Chapter 7: Why do you speak in that peculiar way?

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Chapter 7: Why do you speak in that peculiar way?

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"When there’s a gap between what I’m thinking and what I’m saying, it’s because the words coming out of my mouth are the only ones I can access at that time. These words are either available because I’m always using them or because they left a lasting impression on me at some point in the past."

Higashida, Naoki. The Reason I Jump (p. 17)

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It's not always what we say, but how we say it: Even a 'hello' can take on dramatically different meanings, depending on its delivery. Spoken quickly and with a pitch that rises and falls, it suggests happy excitement; said slowly and with a falling pitch, it can impart disappointment.

The patterns of emphasis and intonation people use when they speak give their sentences and phrases a musical quality called 'prosody.' Prosody conveys the emotions behind the words as much as the words themselves do.

Men who have autism often speak with unusual prosody when making emotional statements, but this does not seem to disrupt clarity: Their listeners have no trouble decoding the emotions they are trying to communicate, according to a study published in August in Autism Research.

We asked the study's lead investigator, Noah Sasson of the University of Texas at Dallas, how the findings might be used to improve the social experiences of adults with autism.

Noah Sasson: Prosody refers to any of the non-linguistic content in speech, including cues that indicate whether somebody is making a statement or asking a question. It consists primarily of the things we detect in speech that make it different from written text.

In our study, we focused on emotional prosody, which refers to the nonlinguistic patterns in speech that confer emotional information to a listener.
S: Why did you study emotional prosody in people with autism S: How did you study prosody in people with autism??
NS: Since the first descriptions of autism, people have noticed that the speech patterns of individuals with autism are sometimes different, or even odd or peculiar. Previous acoustic analysis of speech patterns in autism have largely focused on non-emotional prosody. However, because social expressivity often differs in autism, we wanted to see whether emotional prosody has distinct features in adults with autism, and if so, whether it affects how listeners perceive the emotions.

I became interested in this because my team previously found that neurotypical people report being less inclined to interact with people who have autism after seeing videos of them or hearing recordings of them talking. But that wasn't the case when they only read the transcripts of their speech. This suggested to us that the speech patterns of people with autism can convey information that leads to unfavorable impressions.

NS: We recorded audio from 15 men with autism and 15 neurotypical men, all of at least average intelligence. Each man spoke five phrases - such as "I can't believe this" - that could have different emotionality attached to them depending on how they were said. We asked the men to say each phrase in a neutral tone and then in four different emotional contexts - happy, interested, angry and sad - after evoking these emotional states in the participants. Daniel Hubbard, the graduate student who led the study, analyzed the basic acoustic properties of each person's speech, including pitch range, volume and how long it took to say each phrase.

We found robust differences in speech patterns between the adults with autism and neurotypicals for all four emotions: The adults with autism used a greater pitch range, were louder and took longer to finish each phrase.

However, the two groups didn't differ on the neutral phrasing, which indicated to us that, at least in this sample, these prosodic differences are specific to emotion and not just to phrasing in general.
S: Do your findings have implications for therapy S: What are you working on now??
We then asked a group of 22 people with autism and 30 neurotypical individuals to listen to the same recordings and identify the emotion being expressed. Consistent with previous studies, we found that listeners with autism were less accurate at identifying the emotion in the phrases than the controls were. But all of the listeners were better at identifying emotion in the speech from individuals with autism than from controls. So, although speech patterns of adults with autism were quantitatively different than those of typical individuals - they were exaggerated in pitch and volume - they retained the prosodic qualities that conveyed specific emotions.

Still, all of the listeners rated the speech of the men with autism as less natural than that of controls, and this kind of judgment could affect the quality of social interaction.

NS: This study aligns with our previous work showing that neurotypical people are sensitive to differences in social and emotional expression among people with autism. Even when those differences don't affect emotional understanding, they might lead to evaluative judgments that decrease the chances of a neurotypical person wanting to interact with a person with autism. And if interaction does occur, it might affect the quality of the interaction. In this way, the perceptions, biases, and behaviors of neurotypical people affect the social experiences of adults with autism.

One thing we hadn't predicted was that listeners with autism are just as likely as others to judge the speech of people with autism as less natural. That indicates to us that they, like controls, are sensitive to qualities in speech that can provoke evaluative judgments.

That's interesting to me because there's this idea that prosody differences in adults with autism happen because these adults are insensitive to others judging them as different. But the adults with autism in our study were just as sensitive as controls at detecting unusual prosody.

From our study, we can't determine the origin of these differences in prosody. We can just note that they exist and drive certain perceptions.

NS: Yes, perhaps. For individuals with autism, it might depend on whether they are aware of their own speech differences, and are interested in knowing how they are perceived by others.

Now, obviously, when speech patterns are perceived as less natural, it also says a lot about the evaluator. I have been thinking about how informing neurotypical people about social expression differences in autism might improve social experiences for people with autism. The goal would be to minimize negative biases associated with those characteristics. Our research and others' suggests that the more familiarity people have with individuals on the spectrum, the more positive their perceptions of individuals with autism.

NS: We're interested in seeing how evaluations are formed in real time when people meet each other in person, rather than while watching videos or listening to speech recordings. After two people get to know each other, we ask each person to evaluate the other person on a number of traits. We can have a person who has autism meet a neurotypical person, or have two unfamiliar people with autism get to know each other, and then try to identify characteristics in each individual that drive positive social evaluations and interactions.

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'Tone' of phrase may differ in autism, but meaning is clear

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It's not always what we say, but how we say it: Even a 'hello' can take on dramatically different meanings, depending on its delivery. Spoken quickly and with a pitch that rises and falls, it suggests happy excitement; said slowly and with a falling pitch, it can impart disappointment.

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Chapter 9: Should we listen to every single word you say?

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Chapter 9: Should we listen to every single word you say?

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"Making sounds with your mouth isn’t the same thing as communication, right? Lots of people can’t get their heads fully around this, I think. Isn’t there a belief out there that if a person is using verbal language, it follows that the person is saying what they want to say? It’s thanks to this belief that those of us with autism get even more locked up inside ourselves."

Higashida, Naoki. The Reason I Jump (p. 19)

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Everyone has different strengths, interests, needs and challenges. Just like with any other friend, colleague or acquaintance, learning these are the first step to positive relationships and communication.

Also See: For Those Who Are More Impacted on the Spectrum, Nonverbal or Need Extra Assistance

Autistic people bring new perspectives and ideas, enriching our communities and workplaces with their gifts inspired from seeing the world in different ways. We offer information about Autism Spectrum Disorder (ASD) here. With 1 in 36 American children now diagnosed with some form of autism, if you think you don't know anyone with autism you might be wrong. Being part of the wider community and developing relationships benefits everyone.

We offer these tips and insights to achieve positive relationships and community, understanding more about what being on the autism spectrum means. Depending on the age and ability of the individual you may adapt different communication strategies and accommodations. These techniques are good to use with anyone, regardless of whether they are neurotypical or have ASD. Be respectful, ask what the person prefers, likes and needs.

Ways to Build Relationships and Rapport

Be patient while having a conversation, giving the person time to answer.

Always strive to be encouraging and compassionate.

Learn about their favorite interests, games or hobbies and try to find common ones.

Be aware of the tendency by autistic people to speak at length about their favorite topics which may require some gentle prompting or redirection.

Sustaining conversation can also be challenging. You can support them by offering choices, suggesting topics or bridging the conversation to a topic you know they can discuss.

Offer concise directions or clear choices. For example, "Would you like to take a walk or ride our bikes?

Provide specific praise such as "I liked the way you waited for me before leaving the room" instead of a vague "good job" so they understand what behavior you are seeking from them.

To make your own communication clearer, share with the individual what you want them to do rather than what you don't want them to do (i.e. Instead of saying "don't run,' it's better to say "please walk in the hall.")

Don't be offended by lack of eye contact, motor tics or a lack of understanding personal boundaries. These are common challenges for an autistic person.

Understand that autistic people like routines and schedules.

Autistic people tend to think literally, so it is best to avoid idioms and slang.

Pointers to help autistic people if they get off topic or spend too much time on a topic:

Gentle nudge or prompt to get back on topic such as, "What were we talking about again?" Or redirect them by bringing up the topic you were originally discussing like, "Where should we go for lunch? It sounds like you love Chinese food, how about XYZ place at 11:45 am?" (ideally somewhere not too loud or at crowded time)

"So to summarize, our next steps are XYZ, your part will be this and it will be due by x date. Does that seem to cover what we discussed?"

In a kind yet concrete way, say, "I hear you really like talking about dinosaurs, but I am not really interested in that and don't want to talk about it anymore, can we talk about something we are both interested in?" Then suggest something that you have in common or could such as favorite movies or food.

Boundary Issues

Social communication can be challenging for autistic people. They may have different perceptions of spheres of social norms for different types of people. For example, understanding that a teacher or supervisor is not equated with a social friend. Or the difference between a friend and a friendly acquaintance. They may not realize the appropriate amount of personal space to give people. Autistic people tend to be more literal so it's helpful to offer them gentle but direct guidance in a kind voice.

If you need to help someone with boundary issues:

If they seem to stand too close to you, be kind but gently direct. For example, you could say "cCould you please stand about this far apart from me when we're talking? Thanks so much." (You can raise your arm a little to give an idea of how far apart you mean.)

If the person touches your hair, hugs you inappropriately or similar physical interaction, you can start by moving away out of reach. If it is persistent or bothersome, ask the person to stop. You could also distract them by redirecting them to move their attention to something else like an activity. You can also model the physical distance and appropriate place for your own hands at your sides, in your pocket, arms folded and the like.

If the person shares personal information you're not comfortable with because you're not a friend or that close to them, try to change the subject to something more appropriate. If that doesn't work, you can gently tell them that topic is a little too personal.

Communication Style

Provide options for how the person prefers to communicate, whether texting on phone, emailing or face to face conversation. Don't assume everyone wants to communicate in the exact same way. Making the purpose or reason for the communication clear (i.e. in college is it social or class project) helps the autistic person prepare and sets expectations.

Autistic people do well with clarity and structure. However it doesn't need to be formal. An agenda is not necessary, just sharing the topic like, we're going to meet to plan logistics for a specific event.

Be aware that some people have more limited abilities or preferences with communication modes so may need to use nonverbal approaches whether picture schedules, tablets, gesturing or picture exchange systems.

Managing Sensory Issues

Autistic people may have sensory challenges with touch, sound, light, smell or taste more intensely than neurotypical people. You can be helpful and sensitive to them by thinking about loud sounds, bright lights, strong smells and food issues that might be most difficult for your autistic friend or colleague.

For meetings or business interactions, think about how to be considerate to their needs. For example, avoid restaurants or meeting locations that have intense sensory experiences. Minimize distractions by choosing a quiet, uncluttered location which as a side benefit may help your team focus better. You could look at it as providing soothing, peaceful and zen/meditation like versus the gamified colorful bright vibrant places.

When overstimulated an autistic person may use different self soothing strategies including leaving the room or area to avoid a meltdown or shutdown. Or they may just have a difficult time focusing and doing their best.

Consider having sensory friendly meeting areas or classrooms, for example with dimmed lights, comfy chairs, limited distractions in the room, neutral colors.
We offer tips about social or business outings, events or meetings whether in a personal or business setting here.
For Those Who Are More Impacted on the Spectrum, Nonverbal or Need Extra Assistance

With people who are more impacted, they will have higher needs in areas such as communication and sensory issues and will need more extensive support in daily living. However, being nonverbal does not necessarily mean higher impacted. Don't presume a person's intellectual capacity based on their being low-verbal or nonverbal.

Pause after giving directions to allow the person to process the verbal information.

Offer to provide simply worded written directions or a checklist for routine or novel tasks.

Give the person choices in the conversation (i.e. "Would you like a sandwich or pizza?").

Questions should be worded to only provide acceptable options when possible. For example, if a boss says, "Would you like to join us in this meeting?" the autistic person saying "no" and returning to their desk is a potential response. This is because a command is being worded as a question. In this case, instead, say, "Please come with us for a meeting in the conference room at 10:00 am." (You may need to come get them depending on their level of functioning.)

Have the person repeat important information to confirm understanding (i.e. Ask, "Where are we going?" after you've shared that information).

Use pictures or drawings to help the person communicate (i.e. pictures of food or activity choices).

Visual schedules in which you provide a photo or graphic to designate different activities planned can also be helpful.

Although some people can carry on conversations that last for hours, some individuals may only be able to answer a single question, or engage in a conversation for 5 minutes. In these situations, building in breaks for the individual can be productive and help them stay calmer and more focused.

If Someone Is Nonverbal

Ask the individual or their caregiver how they prefer to communicate.

Learn what assistive devices or techniques they may use. For example, visual schedule, iPad apps, text-to-speech or other voice assistant apps in which a person touches something on their device to speak for them.

Always look at the individual who you are trying to communicate with, not their caregiver. If you were using a translator for a person speaking a different language you would look at the person you want to communicate with, not the translator.

Pair your verbal communication with gestures (point to where you want them to hang their coat or nod your head yes to confirm a response).

If using an assistive device, give them enough time to type in their responses.

Don't talk about them in front of them like they aren't there.

Always face them when talking to them even if they don't appear to be paying attention.

Always communicate what you are doing even if you don't think they understand.

How to Be a Friend to Someone with ASD

The best way to be supportive and develop a good relationship with anyone is by asking how you can be a good friend, colleague, etc. So don't be afraid to ask your autistic friend, "How can I be a better friend?"

In addition to the tips above, here are some suggestions for being a good friend. You may also find the tips we offer for extended family members of autistic individuals helpful.

Listen and don't be quick to give an answer or response when spending time with your autistic friend. Simply be there to give a listening ear. You may have to wait longer for a response or possibly weed through a lengthy explanation, but you will learn something new in the end.

Support your friend if they ask for help. Be sensitive to what they want and need, not just how you think they should improve or behave.

Try not to talk over or about them when others are around.

Help them work on social skills by trying to engage them in conversations with yourself and others.

Find discrete ways to give social hints. Build up their confidence in the same way that you would support any other friend in a challenging situation.

Try not to jump in and make choices for your friend in a social situation.

Thinking about when you are going to get together with a friend is important. Preventing uncomfortable situations is far easier than dealing with them once they happen. Instead of heading to your favorite brunch spot at 11:00 a.m. on a Sunday morning, try going after the rush at 2:00 p.m. or if you know there's going to be a long line or wait somewhere, plan to arrive early (or late) to avoid the crowds.

Milestones is Here to Help You

For more information or guidance, we offer several types of support. Check out our free Helpdesk, schedule Professional Consultations and Trainings, email us at info@milestones.org or call us at 216.464.7600 ext.200.

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Best Communication Practices for Interacting with Autistic People Everyone has different strengths interests needs and challenges Just like with any other friend colleague or acquaintance learning these are the first step to positive relationships and communicationnbspAlso SeenbspnbspFor Those Who Are More Impacted on the Spectrum Nonverbal or Need Extra AssistanceAutistic...

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Chapter 11: Why don't you make eye contact when you're talking?

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Chapter 11: Why don't you make eye contact when you're talking?

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"Us kids with autism, we never use enough words, and it’s these missing words that can cause all the trouble."

Higashida, Naoki. The Reason I Jump (p. 23).

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Individuals with autism spectrum disorder (ASD) often find it difficult to look others in the eyes. This avoidance has typically been interpreted as a sign of social and personal indifference, but reports from people with autism suggests otherwise. Many say that looking others in the eye is uncomfortable or stressful for them -- some will even say that "it burns" -- all of which points to a neurological cause. Now, a team of investigators based at the Athinoula A. Martinos Center for Biomedical Imaging at Massachusetts General Hospital has shed light on the brain mechanisms involved in this behavior. They reported their findings in a Scientific Reports paper published online this month.

"The findings demonstrate that, contrary to what has been thought, the apparent lack of interpersonal interest among people with autism is not due to a lack of concern," says Nouchine Hadjikhani, MD, PhD, director of neurolimbic research in the Martinos Center and corresponding author of the new study. "Rather, our results show that this behavior is a way to decrease an unpleasant excessive arousal stemming from overactivation in a particular part of the brain."

The key to this research lies in the brain's subcortical system, which is responsible for the natural orientation toward faces seen in newborns and is important later for emotion perception. The subcortical system can be specifically activated by eye contact, and previous work by Hadjikhani and colleagues revealed that, among those with autism, it was oversensitive to effects elicited by direct gaze and emotional expression. In the present study, she took that observation further, asking what happens when those with autism are compelled to look in the eyes of faces conveying different emotions.

Using functional magnetic resonance imaging (fMRI), Hadjikhani and colleagues measured differences in activation within the face-processing components of the subcortical system in people with autism and in control participants as they viewed faces either freely or when constrained to viewing the eye-region. While activation of these structures was similar for both groups exhibited during free viewing, overactivation was observed in participants with autism when concentrating on the eye-region. This was especially true with fearful faces, though similar effects were observed when viewing happy, angry and neutral faces.

The findings of the study support the hypothesis of an imbalance between the brain's excitatory and inhibitory signaling networks in autism -- excitatory refers to neurotransmitters that stimulate the brain, while inhibitory refers to those that calm it and provide equilibrium. Such an imbalance, likely the result of diverse genetic and environmental causes, can strengthen excitatory signaling in the subcortical circuitry involved in face perception. This in turn can result in an abnormal reaction to eye contact, an aversion to direct gaze and consequently abnormal development of the social brain.

In revealing the underlying reasons for eye-avoidance, the study also suggests more effective ways of engaging individuals with autism. "The findings indicate that forcing children with autism to look into someone's eyes in behavioral therapy may create a lot of anxiety for them," says Hadjikhani, an associate professor of Radiology at Harvard Medical School. "An approach involving slow habituation to eye contact may help them overcome this overreaction and be able to handle eye contact in the long run, thereby avoiding the cascading effects that this eye-avoidance has on the development of the social brain."

The researchers are already planning to follow up the research. Hadjikhani is now seeking funding for a study that will use magnetoencephalography (MEG) together with eye-tracking and other behavioral tests to probe more deeply the relationship between the subcortical system and eye contact avoidance in autism.

Journal Reference:

Nouchine Hadjikhani, Jakob Åsberg Johnels, Nicole R. Zürcher, Amandine Lassalle, Quentin Guillon, Loyse Hippolyte, Eva Billstedt, Noreen Ward, Eric Lemonnier, Christopher Gillberg. Look me in the eyes: constraining gaze in the eye-region provokes abnormally high subcortical activation in autism. Scientific Reports, 2017; 7 (1) DOI: 10.1038/s41598-017-03378-5

Cite This Page:

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eye care; birth defects; medical topics; medical devices; autism; learning disorders; psychology; disorders and syndromes

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Why do those with autism avoid eye contact? Imaging studies reveal overactivation of subcortical brain structures in response to direct gaze

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Individuals with autism spectrum disorder (ASD) often find it difficult to look others in the eyes. This avoidance has typically been interpreted as a sign of social and personal indifference, but reports from people with autism suggests otherwise.

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Chapter 14: Why do you ignore us when we're talking to you? 

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Chapter 14: Why do you ignore us when we're talking to you? 

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If someone’s talking to me from somewhere far off, I don’t notice. You’re probably thinking, “Same here,” yes? A major headache for me, however, is that even when someone’s right here in front of me, I still don’t notice when they’re talking to me.

Higashida, Naoki. The Reason I Jump (p. 29).

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You had a disagreement with your Asperger's Syndrome spouse two weeks ago and rather than resolving it, he walked away and has been giving you "The Silent Treatment" ever since. (This could just as easily be describing an Aspie woman.) He's nice to everyone who calls on the phone. But you don't exist. He completely ignores you and shuts you out. He sleeps with his back to you. He leaves the house without saying goodbye to you, although he loves on the dog, making it a point that you see it. He mutters under his breath when he walks past you. And you feel like you're going mad! Does this describe anything you've experienced? If so, you are not alone.

The silent treatment is really a cruel form of abuse and it includes more, like ignoring and shunning, and treating you as if your opinion doesn't count.

Yes, many of our Aspies have severe anxiety, and some cross wiring that makes it difficult for them to feel and talk at the same time. Many couples have learned how to cope with these situations by creating their own personal rules for engagement. However, when the Aspie chooses to shut down, cut off, shun and even get passive aggressive, this has the result of making us feel abused, oppressed, and worthless.

Psychologists will tell you that when a person cuts you out of their life or shuts you down in these passive aggressive ways, they suffer from a narcissistic wound. They feel obliterated by your strength, so in turn try to obliterate you. It is a severe type of pathology. Not everyone with ASD takes this narcissistic path, but when they do it is devastating.

I hope that a few of you are brave enough to stand up, speak out and talk back. That's what the next Asperger Syndrome: Partners and Family of Adults with ASD video conference is about. If you're a member of the group, please register for the call to discuss The Silent Treatment on Thursday, October 6, 2016 at 2:30 PM or Thursday, October 27 at 3:00 PM. We'll discuss: How to recognize the abuse. How to confront your Aspie. How to take back your life, whether they get it or not. (If you're a NT in an NT/AS relationship, please feel free to join this group.)

Also, be sure to read " Our of Mind - Out of Sight: Parenting with a Partner with Asperger Syndrome (ASD) ". This book discusses the science behind Aspie behavior and how you can initiate the rules of engagement that help your Aspie give you the emotional support that you need. Click on the image below to request a free chapter.

Categories Blog Posts

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The Silent Treatment - When Those with Asperger's Shut You Out

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You had a disagreement with your Asperger's Syndrome spouse two weeks ago and rather than resolving it, he walked away and has been giving you "The Silent Treatment" ever since. (This could just as easily be describing an Aspie woman.) He's nice to everyone who calls on the phone.

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Chapter 16: Is it true that you hate being touched? 

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Chapter 16: Is it true that you hate being touched? 

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"More generally, for a person with autism, being touched by someone else means that the toucher is exercising control over the person’s body, which not even its owner can control properly. It’s as if we lose who we are. Think about it—that’s terrifying!

Higashida, Naoki. The Reason I Jump (p. 32).

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The brains of people with autism respond differently to a gentle brush on the arm - a form of social touch - than do those of people without the disorder, according to a study published 5 June in Cerebral Cortex. The findings may help explain some of autism's social deficits.

"People without autism automatically interpret the social significance of the touch and start revving up the parts of the brain involved in processing social information," says lead researcher Kevin Pelphrey, professor of psychology at the Yale Child Study Center. By contrast, he says, people with autism "perceive the non-social aspects of touch, but they don't perceive the significance."

Pelphrey and his team used functional magnetic resonance imaging to assess brain activity in 19 children with autism and 19 controls. During the scans, the researchers gently grazed the children's forearms or palms with a soft brush.

Nerves called C-tactile afferents that are found in hairy skin respond to gentle grazes, soft squeezes and other forms of social touch. Brushing the palm activates a different set of nerves that transmits information about texture and other features of the environment.

In controls, brain regions that process social information are more active in response to a touch on the arm than to a touch to the palm. In children with autism, however, both kinds of touch elicit a similar response in social brain regions.

The findings raise the intriguing possibility that people with autism are unable to extract social information from touch, says India Morrison, a neuroscientist at Linköping University in Sweden, who was not involved in the study.

But Morrison cautions that children with autism may simply process social touch differently than controls do. "To test the idea that people with autism spectrum disorder are impaired in some way on social touch, [you] would need more behavioral data."

Touchy subject:

Touch may develop abnormally in autism, resulting in a hypersensitivity to tactile stimuli. Some children with the disorder dislike certain textures. Some hate Velcro whereas others can't stand scratchy clothing tags.

Touch is the first of the five senses to mature. The C-tactile afferents nerves, which respond to slow, gentle strokes on the skin, are fully functional soon after birth. In typically developing children, stimulating these nerves activates a network of brain regions that process social information.

These include, among other areas, part of the prefrontal cortex, a cognitive powerhouse at the front surface of the brain; the fusiform gyrus, a region that processes faces; and the amygdala, an emotion hub. Simulating other types of nerves in the skin, such as those in the palm of the hand, does not trigger the same spike in activity in these social areas.

In children with autism, these two channels for processing touch do not seem to behave in the same way.

The researchers also found that the somatosensory cortex, which encodes the basic tactile aspects of touch, responds more vigorously to a brush on the palm in individuals with autism than it does in controls. Pelphrey says this finding jibes with the controversial ' intense world theory ' of autism, which posits that the social deficits and sensory sensitivities seen in autism stem from heightened activity in certain regions of the brain.

Taken together, the brain scans suggest that people with autism have a hyper-responsive somatosensory cortex but underactive brain regions responsible for social and emotional information, Pelphrey says. This duality may be due to faulty connections between the somatosensory cortex and social regions.

"I find it very exciting," says Kamila Markram, Autism Project director at the Swiss Federal Institute of Technology of Lausanne, who proposed the intense world theory in 2007. The new study supports the idea that sensory overload is a key biomarker of autism.

Exactly what is different about C-tactile afferents in people with autism is not yet clear. The nerves may be under-responsive, Markram says, or may simply respond to stimuli different from those that elicit a reaction in their typically developing peers. "The brains may very well activate if you use the right stimulus for each individual," she says.

Skewed gender ratios may also bias the findings of the current study, Pelphrey says. The autism group included more boys than girls, and the reverse is true for the control group, he says.

Pelphrey says he would like to study whether the abnormal social touch response in autism is present at birth or develops later. "Our next step is to look at a population of newborns - not selecting for autism risk, just studying as many infants as we can - and following them closely over time and seeing how the system changes."

References:

1. Kaiser M.D. et al. Cereb. Cortex Epub ahead of print (2015) PubMed

2. Markram H. et al. Front. Neurosci 1, 77-96 (2007) PubMed

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In autism brains, response to 'social touch' is altered | Spectrum | Autism Research News

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The brains of people with autism respond differently to a gentle brush on the arm - a form of social touch - than do those of people without the disorder. The findings may help explain some of autism's social deficits.

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Chapter 19: What are your flashback memories like?

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Chapter 19: What are your flashback memories like?

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"I know I have lots of pleasant memories, but my flashback memories are always bad ones, and from out of the blue I get incredibly distressed, burst into tears or just start panicking. Never mind that it’s a memory from ages ago—the same helpless feeling I had then overflows and floods out and it just won’t stop."

Higashida, Naoki. The Reason I Jump (p. 36)

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Acute stress disorder and post-traumatic stress disorder (PTSD) often go hand-in-hand. This is because a diagnosis of PTSD cannot be made until at least one month after the experience of a traumatic event. Yet, it is likely that people may begin experiencing PTSD-like symptoms soon after a traumatic event.

The 4th edition of the Diagnostic and Statistical Manual of Mental Disorders describes these PTSD-like symptoms occurring within one month of a traumatic experience as Acute Stress Disorder (ASD).

The symptoms of ASD are similar to those of PTSD except they occur soon after the experience of a traumatic event. ASD symptoms include the re-experiencing, avoidance, and hyperarousal symptoms of PTSD. For example, a person with ASD may experience frequent thoughts, memories, or dreams about the traumatic event. They may also constantly feel "on-edge" or try to avoid reminders of the event.

ASD also includes symptoms of dissociation. Dissociation is an experience where a person may feel disconnected from himself and/or his surroundings. Dissociation may range from temporarily losing touch with what is going on around you (such as what happens when you daydream) to having no memories for a prolonged period of time ("blanking out") and/or feeling as though you are outside of your body. You may feel like you are watching yourself as if you were another person.

It is normal to experience certain stress-related symptoms following the experience of a traumatic event. Therefore, to be diagnosed with ASD, a person must meet certain requirements (or criteria). These requirements are described by the DSM-IV and are provided below:

Criterion A

A person must have experienced a traumatic event where both of the following occurred:

The person experienced, witnessed, or was confronted with an event where there was the threat of or actual death or serious injury. The event may also have involved a threat to the person's or another person's physical well-being.

The person responded to the event with strong feelings of fear, helplessness, or horror.

Criterion B

The person experiences at least three of the following dissociative symptoms during or after the traumatic event:

Feeling numb or detached or having difficulties experiencing emotions.

Feeling dazed or not entirely being aware of surroundings.

Derealization, or feeling as though people, places, and things are not real.

Depersonalization or feeling separated and detached from oneself.

Dissociative amnesia, or being unable to recall important parts of the traumatic event.

Criterion C

The person has at least one re-experiencing symptom, such as having frequent thoughts, memories, or dreams about the event. This may take the form of "flashbacks" in which the event is experienced as if it were happening against, or nightmares, in which the event is re-lived in some form.

Criterion D

The person attempts to avoid people, places, or things that remind him or her about the event.

Criterion E

The person has hyperarousal symptoms, such as feeling constantly on guard or jumpy, having difficulties sleeping, problems with concentration, or irritability.

Criterion F

The symptoms described above have a great negative impact on the life of the person experiencing them, interfering with work or relationships.

Criterion G

The symptoms last for at least two days and at most four weeks. The symptoms also occur within four weeks of experiencing the traumatic event.

Criterion H

The symptoms are not due to an illness or other medical condition, medication being taken, or alcohol/drug use.

ASD and PTSD

ASD is a serious condition. People with ASD are at greater risk for eventually developing PTSD. Because of the dissociation symptoms of ASD, a person may not be able to recall important parts of the event, as well as the emotions they experienced. This might interfere with a person's ability to fully process the impact of the event and their emotions about the event, hindering the recovery process.

Post-traumatic stress disorder (PTSD) is a difficult-to-treat and heart-wrenching condition that can greatly impact the peace and well-being of survivors of trauma.

There has been debate over how well ASD can predict PTSD-most people with ASD go on to develop PTSD, but many people diagnosed with PTSD do not have a history of prior ASD. Yet, in addition to having predictive value for PTSD, ASD is a serious condition deserving of thoughtful care and treatment in its own right.

If you think you may have ASD, it is important that you meet with a mental health professional trained in assessing and treating ASD. The earlier you recognize and address these symptoms, the greater the chance you have of preventing the development of PTSD, and the greater the chance that you can get started right away in coping with the symptoms you currently have.

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How Acute Stress Disorder Symptoms Can Lead to PTSD

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Acute stress disorder and post-traumatic stress disorder (PTSD) often go hand-in-hand. This is because a diagnosis of PTSD cannot be made until at least one month after the experience of a traumatic event. Yet, it is likely that people may begin experiencing PTSD-like symptoms soon after a traumatic event.

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Chapter 20: Why do you make a huge fuss over tiny mistakes? 

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Chapter 20: Why do you make a huge fuss over tiny mistakes? 

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"When I see I’ve made a mistake, my mind shuts down. I cry, I scream, I make a huge fuss, and I just can’t think straight about anything anymore. However tiny the mistake, for me it’s a massive deal, as if Heaven and Earth have been turned upside down. For example, when I pour water into a glass, I can’t stand it if I spill even a drop."

Higashida, Naoki. The Reason I Jump (p. 37)

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Abstract

Autism spectrum disorder (ASD) involves widespread difficulties in social interaction, communication, and behavioral flexibility. Consequently, individuals with ASD are believed to exhibit a number of unique personality tendencies, including a lack of insight into them. However, surprisingly little research has examined these issues. Study 1 compared self-reports of Big Five personality traits in adults with ASD ( N=37) to those of typically developing (TD) adults ( N=42). Study 2 examined whether any observed personality differences replicated in children/adolescents with ASD ( N=50) and TD controls ( N= 50) according to self- and parent reports. Study 2 also assessed level of self-insight in individuals with ASD relative to TD individuals by examining the degree to which self-reports converged with parent reports in terms of self-other agreement and self-enhancement (vs. self-diminishment) biases. Individuals with ASD were more Neurotic and less Extraverted, Agreeable, Conscientious, and Open to Experience. These personality differences replicated for (a) children, adolescents, and adults, (b) self- and parent reports, and (c) males and females. However, personality traits were far from perfect predictors of ASD vs. TD group membership, did not predict within-group variability in ASD symptom severity, and had differential links to maladjustment in the ASD and TD groups, suggesting that ASD represents more than just an extreme standing on trait dimensions. Finally, individuals with ASD had a tendency to self-enhance, and TD individuals, to self-diminish, but both groups showed comparable self-other agreement. Thus, individuals with ASD exhibit distinct personalities relative to TD individuals but may have a similar level of insight into them.

Keywords: autism, psychopathology, personality traits, personality judgment, self-knowledge

Imagine the child who perpetually sequesters himself from others due to social indifference or awkwardness. Or the one who, when venturing into a social interaction to express his fascination with Pokemon, is unable to interpret or act on the cues soon coming from his partner: Eyes dart around, an attempt to interject is issued, a glare, a sigh, a tapping foot, and, finally, the partner mentions needing to be somewhere else - and the child says he can tag along. Such a lack of attunement with and insight into others could easily foster atypical, even abrasive, personality characteristics in these children, who might not even know how they come across nor how to use that knowledge toward better ends. To the casual observer, they would seem socially aloof, avoidant, or unskilled; to one familiar with autism spectrum disorder (ASD), they would suggest the presence of that condition.

Autism was first described by Kanner (1943) in his study of eleven children with "autistic disturbances of affective contact" (p. 271), followed, independently, by Asperger (1944), who reported on a similar syndrome in four children in Vienna. Comprising a clinical phenotype that is highly variable in its form and severity, ASD - including "classic" autism, high-functioning autism (HFA), Asperger's syndrome, and pervasive developmental disorder not otherwise specified (PDDNOS) - is a neurodevelopmental disorder characterized, for the purpose of diagnosis, by early emerging (1) impairment in reciprocal social interaction, (2) difficulty in verbal and nonverbal communication, and (3) restricted or stereotyped patterns of interests and behavior ( American Psychological Association, 2000). Within this "triad of impairments" ( Rutter, 1968), social impairment has been considered the most debilitating and central to the disorder ( Fein et al., 1986; Rogers, 2000).

Although individuals with ASD have been found to be atypical across many domains of functioning, the unique characteristics of individuals with ASD as manifested in their basic personality traits have received little empirical attention. Moreover, although individuals with ASD are assumed to be ignorant of their peculiar characteristics and to lack self-insight more generally ( Frith & Happé, 1999; Raffman, 1999), autism has never been investigated as a moderator of accuracy in judging one's own personality (i.e., trait self-knowledge). Indeed, researchers seldom assess the self-views of individuals with ASD, let alone evaluate their accuracy relative to some criterion for what they actually are like. Understandably, most work on ASD emphasizes clinically relevant goals, such as refining diagnostic criteria or evaluating the efficacy of different treatments, rather than seeking a deeper look at the personality and self-evaluative processes that might underlie the observed deficits. Thus, the present research investigates two questions about individuals with ASD: (1) how do their personalities differ from those of TD individuals; and (2) do they actually lack insight into their personalities, as is generally assumed?

Do Individuals with Autism Have Unique Personalities?

Children and adults with ASD are described as reluctant to make changes to their routines, as anxiety-prone, and as socially aloof or averse ( Wing & Gould, 1979), with their tending to treat social communications with no greater - and often less - priority than they do asocial stimuli ( Mundy, Gwaltney, & Henderson, 2010). Even when an interest in social interaction exists, individuals with ASD may lack the requisite skills to make a social encounter successful ( Bauminger, Shulman, & Agam, 2003). The debilitating interpersonal impairments experienced by individuals with ASD are assumed to result from a neurocognitive impairment in the basic motivation and ability to understand people's thoughts, feelings, and behaviors - perhaps even their own ( Baron-Cohen, 2009; Chevallier et al., 2012; Perner et al., 1989; Hobson, 1993). Given the unique characteristics of individuals with ASD, it may be expected that their personality profile - that is, the distinct set of traits characterizing their typical patterns of thinking, feeling, and behaving - would be quite different from the modal personality profile of TD individuals.

Over the past few decades, individual differences in personality have increasingly been organized by researchers according to the Big Five model of personality ( John, Naumann, & Soto, 2008), with its dimensions having been linked to a wide range of real-world outcomes and psychological constructs ( John et al. 2008; Ozer & Benet-Martinez, 2006; Roberts, Kuncel, Shiner, Caspi, & Goldberg, 2008), including personality disorders and other forms of psychopathology ( Bastiaansen et al., 2011; Widiger & Smith, 2008), for which there has been emerging interest in shifting from categorical to dimensional models of psychiatric classification (e.g., Adam, 2013; Cuthbert & Insel, 2013; Krueger, Derringer, Markon, Watson, & Skodol, 2011; Widiger & Costa, 2012; Wright et al., in press). In fact, clinical science is currently at a critical juncture as the latest version of the DSM includes an option for making diagnoses based, in part, on assessing clients' maladaptive trait standings ( Krueger et al., 2011; Widiger & Costa, 2012). With increasing integration of normal and pathological personality, using the Big Five framework for investigating personality in ASD can help us understand personality more generally. We might ask, for example, how pervasively is personality altered in ASD, a disorder that has social impairment at its core? Are all traits affected? And how well is the ASD phenotype explained by describing personality? Based on what is known about the cognitive, affective, and behavioral features of ASD and in light of previous research, we can make several predictions about the Big Five traits of individuals with ASD.

First, we predict that individuals with ASD will be lower in Extraversion, given their difficulties with social interaction and communication and their tendency to avoid social contact rather than pursue it as rewarding ( Mundy et al., 2010; Volkmar & Klin, 2000). Second, we predict that individuals with ASD will be lower in Agreeableness due to their reduced capacity to comprehend interpersonal cues; to relate to, empathize with, and feel compassion for others; and to engage in emotionally sensitive, reciprocal social responding ( Dawson et al., 2004; Hobson, Lee, & Hobson, 2007; Mundy et al., 2010). Third, we predict that individuals with ASD will be lower in Conscientiousness, given their deficits in attentional shifting, working memory, inhibitory control, and other aspects of self-regulation ( Hill, 2004; Solomon et al., 2008; Solomon et al., 2009). Indeed, the obsessional focus in ASD on narrow domains of interest might compromise more general aspects of Conscientiousness, such as the tendency to be organized, planful, and task-focused. Fourth, we predict individuals with ASD will be higher in Neuroticism, given their tendency to experience elevated levels of anxiety, anger, and emotional lability; to evidence poor emotion regulation; to develop internalizing and externalizing problems; and to exhibit pervasive social problems that might disrupt social support networks and contribute to feelings of alienation and loneliness ( Capps, Kasari, Yirmiva, & Sigman, 1993; White, Oswald, Ollendick, & Scahill, 2009). Finally, we do not make a prediction about Openness to Experience. Although the behavioral rigidity and novelty-aversion of individuals with ASD imply lower Openness, the unique forms of creativity and hobbies that many individuals with ASD exhibit make the link between ASD and Openness tenuous.

Consistent with our predictions, the two published studies on Big Five traits in ASD - one conducted in Belgium with parents reporting on their 6-14 year-old children ( De Pauw, Mervielde, Van Leeuwen, & De Clercq, 2011) and the other conducted with adult outpatients screened for Asperger's syndrome in Japan ( Kanai et al., 2011) - found lower Extraversion, Agreeableness, Conscientiousness, and higher Neuroticism, in ASD versus TD individuals. De Pauw et al. also found lower levels of Openness in ASD relative to TD individuals, whereas Kanai et al. found no group differences.

Notably, both studies relied on a single method to assess personality. De Pauw et al. used parent reports on the Hierarchical Personality Inventory for Children (HiPiC; Mervielde & De Fruyt, 2002), which was in fact originally constructed from parents' open-ended descriptions of their children, and Kanai et al. used self-reports on a Japanese translation of the NEO Personality Inventory-Revised (NEO-PI-R; Costa & McCrae, 1992). Thus, the effects in each study may have been biased by response styles and other methodological artifacts deriving from the limited perspective a single class of perceivers has on their targets ( Paulhus & Vazire, 2007; Vazire, 2010). For example, it might be unsurprising that Extraversion was the personality dimension that showed the largest group difference in De Pauw et al.'s study based on parent reports (i.e., an "outsider" perspective), whereas Neuroticism showed the largest group difference in Kanai et al.'s study based on self-reports (i.e., an "insider" perspective) ( John & Robins, 1993; Vazire, 2010). Moreover, Kanai et al.'s exclusive reliance on self-reports raises additional concerns: Given the abnormalities in language and social understanding in individuals with ASD, these individuals may interpret personality test items in idiosyncratic ways or may have particularly poor insight into their own personalities. To address these issues, we use both self- and parent reports of personality in children and adolescents with ASD vs. TD controls, allowing us to replicate the findings across assessment methods.

Additionally, we assessed personality in ASD children and adolescents as well as in adults using the same well-validated measure of the Big Five dimensions. Although the five-factor structure of the HiPiC used by De Pauw et al. (2011) is comparable to the Big Five, it is not perfectly commensurate with it ( Mervielde, De Clercq, De Fruyt, & Van Leeuwen, 2005). HiPiC Benevolence, for example, despite being analogous to Agreeableness, includes a Dominance facet that is more frequently associated with Extraversion and an Irritability facet that is more aligned with Neuroticism ( Mervielde et al., 2005). Thus, the present research uses the Big Five Inventory (BFI; John, Naumann, & Soto, 2008) to examine relations between autism and the core components of the Big Five. Using the same instrument across two age cohorts also allowed us to address an important question about the personality traits associated with autism: Are the personality differences observed in ASD and TD children evident in adults, or do ASD children seem to "grow out" of their potentially problematic personality tendencies?

Moreover, because ASD does not present identically with regard to its detection and severity across cultural, ethnic, racial, regional, and socioeconomic contexts (e.g., Matson et al., 2012; Norbury & Sparks, 2013), differences driven, in part, by extensive variability in norms for social behavior and how autism itself is conceptualized and diagnosed, replication in a North American sample would support the generalizability of the previously observed personality differences. For example, higher levels of ASD symptom severity are generally reported in the United States compared to most other countries ( Sipes et al., 2012). Perhaps consistent with this, the "high symptom severity" ASD group in De Pauw et al. (2011) was defined using a cut-off point on the Social Communication Questionnaire (SCQ; Rutter et al. 2003) that in the U.S. would be considered the minimum level for making an ASD diagnosis, and the "low symptom severity" group would not even receive an ASD diagnosis. Extending research on personality in ASD to the U.S. would tell us something about the cross-cultural generality of links between personality and ASD and thus help identify which personality traits are most clinically relevant to the disorder.

Aside from these methodological extensions, we also sought to move beyond simply describing ASD vs. TD differences in personality and ask how accurately we can predict whether or not an individual has an ASD based solely on their Big Five traits. Would knowing that a person is unusually introverted, disagreeable, disorganized, emotionally volatile, and restricted in their interests and behavior be sufficient to correctly classify him or her as having a clinical condition? Which traits would be most "diagnostic"? To address these questions, the present research uses discriminant function analysis (DFA), by which group membership can be predicted from all Big Five traits simultaneously and their relative influence assessed. DFA and other weighted classification techniques have been used with remarkable success (e.g., 95% classification accuracy) to predict ASD diagnosis in individuals as young as 2-4 years old when predictors are relatively low-level biological factors such as whole and regional brain volumes ( Akshoomoff et al., 2004) and pairs of electroencephalography (EEG) or magnetoenchephalography (MEG) signals coming from different areas of the brain ( Domínguez, Velázquez, Galán, 2013; Duffy & Als, 2012). The question, then, is how well can we predict ASD diagnosis using the Big Five framework, the most comprehensive and parsimonious framework available for summarizing phenotypic tendencies in thoughts, feelings, and behaviors?

Such an analysis capitalizes on the possibility that personality traits cross the threshold from normalcy to psychopathology and bears on the dimensional/categorical issue that has become a focus (and often source of controversy) in personality and clinical psychology - whether psychological variation is best described in terms of degrees vs. kinds (cf. Meehl, 1992). Some researchers have argued that autism is a dysfunctional extreme of a "broader autism phenotype" that is normally distributed in the general population ( Dawson et al., 2002; Piven, Palmer, Jacobi, Childress, & Arndt, 1997). However, a meta-analysis by Haslam, Holland, and Kuppens (2012) suggests that ASD may be one of the only syndromes of maladjustment to be best characterized as categorical, making an analysis of ASD within the dimensional framework of the Big Five potentially informative.

One step towards better understanding trait processes in ASD is to examine how traits relate to the phenotypic features of the disorder in individuals with and without ASD. If ASD is truly a categorical variable - that is, if it "carves nature at its joints," as Meehl put it - then we might expect personality differences to predict between but not within-group variability in autism symptom severity. In contrast, if autism comprises a continuum and the diagnostic cut-off used to categorize individuals as having vs. not having ASD is largely arbitrary - creating a dichotomous category out of a continuous phenotype - then we would expect personality traits to predict within- as well as between-group differences in symptom severity. Autism provides a unique opportunity for studying such trait-pathology links given the tremendous diversity in its presentation; while one individual with ASD may be "socially aloof, completely mute, and locked into repetitive rocking and hand flapping," another may be "inappropriately over-friendly, highly verbal but incapable of distinguishing jokes from lies, and fascinated by abstruse astronomical facts" ( Happé & Charlton, 2012; p. 70). A related approach is to evaluate whether diagnostic status (i.e., having or not having ASD) moderates the relationship between traits and more general indices of maladjustment, such as externalizing and internalizing. If similar associations are found in the ASD and TD groups, then these groups, even if they differ on trait levels, could still be construed to lie on the same continuum of functioning.

With both approaches in mind, we examined how personality variation maps onto pathological variation by analyzing the degree to which the Big Five traits predict ASD symptom severity and general maladjustment (internalizing and externalizing symptoms) within the ASD and TD samples. Kanai et al. and De Pauw et al. correlated Big Five traits with ASD symptoms and/or general maladjustment, finding differential associations across the Big Five, but the same informant provided all relevant information. In contrast, the present research examines associations of parent- and self-reported Big Five traits with parent reports of ASD symptoms and maladjustment, and with clinician reports of ASD symptoms using the ADOS-G, a behavior-based diagnostic tool that has been found to be more sensitive and stable over time than parent reports ( Lord, 2000). As such, the present research is the first to examine whether and the degree to which the Big Five traits predict clinical observation of ASD-related behaviors.

Do Individuals with Autism Lack Self-Insight?

Frith and Happé (1999) asserted that autism is "a devastating disorder because it disrupts not only understanding of others and their social relationships, but also understanding of self" (p. 19). Similarly, Zahavi (2010) noted that although autism is primarily associated with social deficits, "there is of course a long standing tradition - reflected in the very term 'autism' from the Greek term for self 'autos' - for also considering it as a disorder of self and self-understanding" (p. 547). To the extent that individuals with ASD are characterized by poor self-understanding, they should evidence inaccurate self-views, but researchers seldom assesses the self-views of individuals with ASD. Nevertheless, theory and research on autism suggest that individuals with ASD may have poor self-insight due to deficiencies in three main capacities: (1) the capacity to introspect on their internal thoughts and feelings; (2) the capacity to use concepts and language crucial for building self-knowledge; and/or (3) the capacity to engage in social interactions that advance self-knowledge through the opportunity to internalize others' views of them.

First, although Theory-of-Mind deficits are well-known in ASD (cf. Baron-Cohen, Leslie, & Frith, 1985; Yirmiya, Erel, Shaked, & Solomonica-Levi, 1998), individuals with ASD are also purported to have deficits in basic self-awareness and introspective capacity - aspects of psychological functioning without which self-insight should be difficult to attain ( Morin, 2011; Trapnell & Campbell, 1999). Several researchers ( Baron-Cohen, 2003; Frith & Happé, 1999; Lombardo & Baron-Cohen, 2011) posit that the neurocognitive mechanism that is impaired in ASD enables the attribution of mental states not only to others but also to oneself. Thus, to the extent that individuals with ASD have trouble grasping or gleaning others' thoughts, feelings, intentions, motivations, beliefs, attitudes, and so on, they are thought to lack immediate rapport with their own, even needing to infer them from their own behavior in the same rigid, rule-based fashion they apply to others. This impairment, termed "mindblindness" ( Baron-Cohen, 1995; Carruthers, 1996), has been inferred from such findings as that high-functioning individuals with ASD do not report on second-order thoughts when asked about their mental contents, instead tending to convey visual imagery mostly related to first-order experience ( Frith & Happé, 1999), and that brain regions related to introspection and mentalizing, which overlap ( Lombardo et al., 2010), either function abnormally in individuals with ASD ( Assaf et al., 2010; Di Martino et al., 2009) or give rise, when damaged, to characteristics consistent with the disorder ( Umeda, Mimura, & Kato, 2010).

The second, less extreme, perspective suggests that individuals with ASD do not lack introspective capacity but the ability to use meta-representational concepts needed for understanding and organizing their introspections ( Leslie & Thaiss, 1992; Perner, 1991). This deficit - called "conceptual incompetence" by Raffman (1999) - should impair the ability of individuals with ASD to form conceptually complex and elaborated representations of their personal attributes, let alone accurate ones. That is, if individuals with ASD are unable to crystallize their self-reflections, they should be less able to develop, over time, the richly connected semantic and experiential associations that contribute to self-knowledge and its report. Consistent with this possibility, individuals with ASD are often characterized by alexithymia - literally meaning "having no words for emotions" - and have difficulty describing their emotional experience despite showing typical emotional reactions in other respects ( Ben Shalom et al., 2006; Berthoz & Hill, 2005).

Finally, individuals with ASD may be unwilling or unable to engage in the type of social interaction that promotes the attainment of accurate self-knowledge. As Hobson (2002) suggested, developing self-knowledge depends on the ability to adopt another's attitude towards oneself, itself mediated by insight into another's reactions to oneself during interpersonal exchanges. This view, complemented by impaired Theory-of-Mind deficits in ASD, aligns with the symbolic interactionist idea of the "looking-glass self" ( Cooley, 1902; Mead, 1934; Schrauger & Schoeneman, 1979), whereby people come to know themselves through the eyes of others and come to internalize those views. Given that individuals with ASD tend to shy away from social contact altogether and often fail to understand others' social cues, they may lack sufficient means for accruing knowledge about themselves through the knowledge that others mirror about them.

So far, we have outlined ways in which self-insight might be impaired in autism according to theories of autism. However, several lines of theory and research from the literature on personality judgment also inform our predictions. Funder (e.g., 1995, 1999) organized moderators of accuracy in personality perception into four main categories, which he labeled (1) good judge, (2) good target, (3) good trait, and (4) good information. ASD complicates features related to each of these. We might expect individuals with ASD to be poor judges of personality - including their own - given their pervasive deficits in social-cognitive processing. We might also expect them to be poor targets - including their own - because of the very nature of the personality to be judged. They appear to be neither extraverted nor well-adjusted, both qualities of targets who are accurately judged, with extraversion entailing expressing a wealth of information about oneself, and well-adjustment ensuring such information is coherent, consistent across contexts, and easy to decode ( Colvin, 1993; Funder, 1995). With regard to traits, although traits that are high in observability and evaluativeness are typically the most difficult for the self to judge accurately ( John & Robins, 1993; Vazire, 2010), ASD may (1) confer equal disadvantage for judging external vs. internal traits due to the aforementioned possibility of deficient self-consciousness, yet also (2) inoculate individuals from biases coming from the need to be favorably evaluated by the self or other, given their lack of social motivation and concern about reputation ( Izuma et al., 2011). The net effect would be poor self-insight and possibly even less differentiation across traits regarding those for which ASD individuals have more or less self-knowledge. Finally, ASD could hinder good information. For instance, the social aversion and behavioral inflexibility of individuals with ASD would limit the situations in which they can express and monitor their personalities.

It is possible to go further with these presumed shortcomings when one takes into account the six unique two-way interactions among the moderating factors ( Funder, 1995). Consider autism and judging one's own Conscientiousness. The Judge × Trait interaction denotes Expertise, but individuals with ASD, who have poor executive functioning, are unlikely to be finely attuned to or invested in judging the myriad criteria relevant to Conscientiousness - unlike, say, an emerging entrepreneur whose life pivots around persistence, organization, efficiency, meeting goals, and keeping abreast of these qualities in other people. Regarding Trait × Information, which deals with Diagnosticity, certain attributes in ASD, like preferring work that is routine, paying attention to detail, and being rule-abiding, might seem germane to Conscientiousness when, in actuality, they take on vastly different meanings in the context of the disorder. Altogether, then, a range of perspectives suggests that individuals with ASD will show worse self-insight than TD individuals. Despite this rich array of relevant theory, there is a dearth of empirical research on the topic.

Luckily, the literature on personality judgment also gives us the methodological tools we need to address the issue of self-insight in ASD. The most common approach to evaluating accuracy of self-perception is to compare self-reports of personality with those provided by knowledgeable informants. In the present research, we use parent reports of Big Five traits as a criterion for evaluating the accuracy of ASD and TD youths' self-reports of their Big Five traits. Although parent reports have their own limitations (e.g., parents may provide overly rosy descriptions of their children), they do provide one external source of information that can be used to evaluate the veracity of children's self-views. Once collected, self and informant reports can be compared in terms of relative agreement (i.e., self-informant correlations) and directional deviations (i.e., self-informant discrepancies), which provide somewhat different information ( Schriber & Robins, 2012).

With regard to relative agreement, both variable- and person-centered approaches are available ( Furr, 2010). A variable-centered approach assesses self-other agreement by computing, across persons, a self-informant correlation for each trait. This measure reflects the degree to which self and informants agree about the rank-ordering of targets on each trait. In contrast, a person-centered approach assesses self-other agreement separately for each person by computing, across the set of traits, a correlation between the trait profiles rated by self and informant. This measure of overall profile agreement reflects the degree to which self and informant agree about the rank-ordering of traits within an individual (i.e., which traits are relatively descriptive, or non-descriptive, of the target). However, high profile agreement can sometimes be achieved when a judge rates a target as if she were simply a typical member of her group ( Furr, 2010), so this index is further decomposed into distinctive agreement, reflecting the degree to which a target and judge agree about the unique aspects of a target's trait profile relative to the group average, and two indices of normative agreement that respectively gauge (1) how much a target's self-rated profile converges with the average target-rated profile, and (2) how much an informant-rated profile converges with the average informant-rated profile. By simultaneously examining distinctive and normative agreement, we should be able to directly assess the extent to which ASD and TD individuals agree with informants regarding their profile of unique, differentiating traits as opposed to simply the profile of traits likely to define them based on group membership. We predict individuals with ASD will show worse self-other agreement than TD individuals according to both variable- and person-centered approaches.

With regard to directional deviations, although high self-informant correlations, both variable- and person-centered, suggest greater self-insight, neither provides information about systematic biases. That is, high self-informant correlations can be obtained even when self-reports are systematically more positive (or negative) than informant reports. Thus, to complement self-informant correlations, self-reports can also be compared to other-reports in terms of directional deviations, whereby positive discrepancies for favorable attributes indicate self-enhancement, and negative discrepancies, self-diminishment. Based on research showing that individuals with ASD report their psychiatric symptoms to be less severe than they actually are ( Koning et al., 2001; Johnson et al., 2009), we predict that individuals with ASD will show a positivity bias relative to parent reports of their personality. Altogether, these various measures of agreement and bias provide a comprehensive test of the degree to which individuals with ASD exhibit poor self-insight relative to TD individuals.

The Present Research

The present research had two broad aims: (1) to investigate personality differences between ASD and TD individuals, and (2) to investigate whether ASD individuals have less insight into their personalities than do TD individuals. In Study 1, we examined group differences in self-reported personality traits between adults with and without ASD, then examined the degree to which personality traits (1) predicted ASD vs. TD group membership and (2) explained variability within the ASD group in clinician-rated ASD symptoms. Study 2 extended Study 1 in three main ways. First, we examined personality-ASD relations in a sample of children and adolescents rather than adults. Second, we used both self- and parent-reports of the Big Five, allowing us to rule out the possibility that self-report response-style differences might account for the ASD vs. TD differences in personality. Third, we examined the personality correlates of within-group variability in general maladjustment (internalizing, externalizing) as well as in ASD symptom severity, and we did so in the TD group as well as in the ASD group. Finally, Study 2 also addressed the question of self-insight by looking at the degree to which the self-reports of children and adolescents with and without ASD converge with parent reports in terms of accuracy (self-informant correlations from variable- and person-centered approaches) and self-enhancement bias (positive discrepancies between self and informant reports).

Study 1

The majority of research on ASD has been limited to children and adolescents, despite understanding of autism as a developmental disorder and despite calls for researchers to examine ASD in adulthood ( Borthwick, 2012). Thus, we first examined how the personality traits of adults diagnosed with ASD differ from the personality traits of an age- and gender-matched sample of TD individuals. It is possible that individuals with ASD develop more positive personality characteristics as they learn skills and strategies that help them adapt to the social world ( Seltzer, Shattuck, Abbeduto, & Greenberg, 2004), perhaps especially if they have already received the benefit of an earlier diagnosis ( Makrygianni & Reed, 2010). Investigating personality in adults with ASD would shed light on the implications of autism for adulthood, when individuals are faced with the developmental task of learning to support themselves in order to live independently and are establishing nurturing, meaningful relationships. As such, it could also help "tailor treatments, interventions, and services and supports to the evolving needs of adolescents transitioning to adulthood and adults across the spectrum with ASD" ( IACC, 2010, p. 39).

To assess the robustness of any observed differences, we examined whether they (a) hold after controlling for group differences in IQ, and (b) are moderated by sex. The extreme male-brain theory of autism ( Baron-Cohen, 2002) raises the possibility that TD individuals will show larger gender differences in personality relative to individuals with ASD, as the latter group might be characterized by more uniformly "male" features.

Method

Participants

Participants were 37 (22% female) individuals with ASD ( M age = 22.2 years, SD = 5.5; range = 18 to 40 years) and 42 (20% female) TD individuals ( M age = 23.2 years, SD = 4.2; range = 18 to 34 years), all with Wechsler Full Scale IQ ≥ 79 (WASI; Wechsler, 1999). Of the ASD sample, 29% were diagnosed with high-functioning autism (HFA), 57% with Asperger's syndrome, and 14% with PDDNOS, according to criteria set by the DSM-IV-TR ( American Psychiatric Association, 2000), assessment via the Autism Diagnostic Observation Schedule-Generic ( Lord et al., 2000), a prior community diagnosis, and a psychosocial interview. We included individuals with varied diagnoses because it is difficult to reliably distinguish among these disorders, and there is no empirical distinction in symptomatology or outcome by the age of 8 years (the age of the youngest participants in the current research; e.g., Ozonoff & Griffith, 2000). Individuals with diagnoses of autism with known genetic etiologies and psychopathology were excluded.

Participants were recruited from local physicians, psychologists, speech and language pathologists, occupational therapists, advocacy groups, regional centers, ASD support groups, and the M.I.N.D. Institute's Subject Tracking System, which includes children and adults with developmental disorders as well as TD children and adults who serve as control samples. TD participants could have no current or history of psychiatric disorders, including neurodevelopmental disorders, other than learning disabilities.

The ASD ( M = 108, SD = 16.1; range = 79 to 140) and TD groups ( M = 116, SD = 12.1; range = 87 to 136) differed in Full Scale IQ scores, t = 2.3, p < .05. Given this difference, we will examine whether any observed personality differences between the ASD and TD groups hold after controlling for IQ.

Results and Discussion

Do ASD and TD adults have different personality trait levels?

We first examined whether ASD and TD individuals showed different personality trait levels. Compared to TD adults, ASD adults tended to be more Neurotic and less Extraverted, Agreeable, Conscientious, and Open to Experience (see ). These personality differences were generally "large" in magnitude according to Cohen's (1988) rules of thumb, ranging from a standardized mean difference of .55 for Openness to a difference of .90 for Conscientiousness, with a median d of .84. All effects remained significant when IQ was entered as a covariate. To test whether these personality differences varied as a function of sex, we conducted a series of 2-way ANOVAs with Group (ASD vs. TD) and Sex (Male vs. Female) as between-subjects factors. The Group × Sex interaction was nonsignificant for all Big Five dimensions, indicating that the personality differences between ASD and TD adults were similar for men and women.

How well do personality traits predict ASD vs. TD group membership?

We next examined how well personality traits alone could be used to predict whether individuals did or did not have an ASD diagnosis - that is, whether they belonged to the ASD or TD group. A discriminant function analysis was performed using the Big Five traits as predictors of ASD vs. TD group membership. The discriminant function was significant (Wilks' lambda = .697, χ ²(5) = 26.49, p < .001), with a canonical correlation of .55, indicating that the model accounted for 30.3% of the between-group variance. Results suggest that Neuroticism, with a standardized discriminant function coefficient of −.38, was the best predictor of group membership, followed by Agreeableness, .37; Conscientiousness, .37; Openness, .26; and Extraversion, .23. Overall, the model correctly classified individuals as ASD vs. TD 70% of the time. These results suggest that personality predicts diagnostic status reasonably well, but clearly more goes into differentiating the ASD and TD groups than personality.

Do personality traits predict within-group variability in ASD symptom severity in the ASD group?

The previous sets of analyses investigated the degree to which personality traits are associated with the between-group diagnosis of ASD vs. TD. Here, we explore whether personality traits predict within-group variability in ASD symptom severity based on behavioral observation in individuals diagnosed with ASD. In other words, do individuals with more severe ASD symptoms have different personality traits than individuals with milder ASD symptoms? shows correlations between adults' self-rated Big Five traits and clinician-rated ASD symptomatology using the ADOS. A multiple regression analysis simultaneously entering all Big Five traits as predictors of total ADOS score was not significant ( R ² = .23, F = 1.825, ns). Only Neuroticism was significantly related to ASD symptom severity, r = −.37, but higher levels of Neuroticism predicted less, not more, severe symptoms. This counterintuitive result should be treated with caution, however, because it became nonsignificant when we eliminated the three outliers with standardized residuals greater than two standard deviations from the regression line, indicating that the effect is driven by a relatively small number of cases. Moreover, as will be seen in Study 2, the corresponding correlation is not significant in the child/adolescent sample. Overall, the results suggest that personality does not significantly contribute to within-group variability in ASD symptomatology in individuals diagnosed with ASD, a conclusion that is further bolstered by the findings to be reported in Study 2.

Taken together, the findings from Study 1 support predictions based on previous theory and research, and suggest that personality differences between ASD and TD individuals are evident in adulthood. However, findings indicate that personality, while successful at distinguishing between diagnostic groups, generally does not significantly distinguish between individuals with ASD who are experiencing more or less severe symptoms.

Study 2

Study 2 examined whether the personality differences observed in Study 1 replicate (1) in a sample of children and adolescents with ASD as well as (2) for self and parent reports of personality. Study 2 also continued to explore how personality relates to maladjustment. We again examined how traits relate to variability of clinician-rated ASD symptoms in individuals diagnosed with ASD. In addition, because the possibility of a broader autism phenotype that is normally distributed in the general population encourages testing for, and even expecting, similar trait-pathology links in the ASD and TD samples, we examined how Big Five traits relate to within-group variability of ASD symptoms in both groups using parental ratings of ASD symptoms. Finally, we extended these trait-maladjustment analyses to looking at how traits relate to more general indices of maladjustment (i.e., internalizing and externalizing) as rated in both groups by parents.

The other purpose of Study 2 was to examine whether individuals with ASD have insight into their personality traits. Replication of results across self- and parent reports would hint at "yes", but we can more directly use these data to test this enduring issue in ASD using parent reports as a criterion measure for evaluating accuracy and bias in the self-perceptions of individuals with and without ASD. Based on both the autism and personality judgment literatures, we expected individuals with ASD to show less self-insight, both in terms of self-informant agreement and self-enhancement.

Method

Participants

Participants were 50 (58% female) individuals with ASD ( M age = 12.1 years, SD = 3.4, range = 8 to 18) and 50 (60% female) TD individuals ( M age = 12.0, SD = 3.0, range = 8 to 18), all with FSIQ ≥ 75 (WASI; Wechsler, 1999). The recruitment strategy and inclusion and exclusion criteria were the same as in Study 1. Of the ASD sample, 56% were diagnosed with HFA, 24% with Asperger's syndrome, and 20% with PDDNOS, according to criteria set by the DSM-IV-TR, using the ADOS-G, and a score above 15 on the Social Communication Questionnaire (SCQ; Rutter, Bailey, & Lord, 2003). The ASD ( Ms = 104, SD = 16.3, range = 75 to 145) and TD groups ( M = 117, SD = 12.9, range = 88 to 139) differed in FSIQ scores, t = 4.2, p < .01. Given this difference, we will examine whether any observed personality differences between the ASD and TD groups hold after controlling for IQ. Also, one unique feature of the design in this study's design was the approximately equal proportion of males to females in the ASD sample, rather than the 4:1 ratio typically seen in the ASD population ( Fombonne, 2003). This provided us with more power for testing whether gender moderated any of the observed differences in personality.

Results and Discussion

Do ASD and TD children and adolescents have different personality trait levels?

Consistent with previous research and what we observed in the adult sample in Study 1, ASD children and adolescents tended to be more Neurotic and less Extraverted, Agreeable, Conscientious, and Open to Experience than TD children and adolescents (see ). The effect sizes were "moderate" to "large" in magnitude, ranging from .37 for Openness in child self-reports to 1.84 for Neuroticism in parent reports; Neuroticism also showed the largest group difference in child self-reports. All of the personality differences replicated for self and parent reports, except that the difference in Openness between ASD and TD children did not hold in self-reports. The effect sizes were larger for parent reports (median d = 1.19) than for self-reports (median d = .48).

To test whether the personality differences varied as a function of sex, we conducted a series of 2-way ANOVAs with Group (ASD vs. TD) and Sex (male vs. female) as between-subjects factors predicting self and parent reports of each Big Five dimension. In all 10 analyses, the Group × Sex interaction was nonsignificant, indicating that the personality differences between ASD and TD children were similar for boys and girls.

Finally, we tested whether these personality differences held after controlling for IQ. All of the effects remained significant when IQ was entered as a covariate, except that the group difference in self-reported Conscientiousness became marginally significant, p < .10.

How well do personality traits predict ASD vs. TD group membership?

To examine how well personality traits predict presence or absence of ASD diagnosis (i.e., ASD vs. TD group membership), discriminant function analyses were performed separately for child self-reports and parent reports using the Big Five traits as predictors. For both sets of reporters, the discriminant function was significant (in children: Wilks' lambda = .827, χ ²(5) = 17.90, p < .01, with a canonical correlation of .42; in parents: Wilks' lambda = .484, χ ²(5) = 68.56, p < .01, with a canonical correlation of .72). Results suggest that for each set of reporters, Neuroticism was the best predictor of group membership. Standardized discriminant function coefficients for each trait were, for child self-reports: Neuroticism, −.61; Openness, .34; Extraversion, .31; Agreeableness, .25, and Conscientiousness, .08; and, for parent reports: Neuroticism, −.64; Conscientiousness, .30; Openness, .24; Agreeableness, .13; and Extraversion, .07. For child self-reports, the model correctly predicted 69% of the cases. For parent reports, the model correctly predicted 83% of the cases. Thus, as with the DFA in the adult sample, results suggest that diagnostic status is somewhat, but far from entirely, explained by Big Five trait levels.

Do personality traits predict within-group variability in ASD symptom severity in the ASD and TD groups?

As in Study 1, we investigated how Big Five traits relate to ASD symptoms within the ASD sample by examining correlations of self- and parent-reported Big Five traits with clinician-reported ASD symptoms on the behavior-based ADOS (see ). No personality traits for either set of reporters were significantly related to total ADOS score. For children and parents, respectively, a multiple regression model simultaneously entering all Big Five traits as predictors of total ADOS score was not significant (for children: R ² = .08, F = .772, ns; for parents: R ² = .04, F = .414, ns). Thus, regardless of the reporter of personality, personality traits did not predict individual differences in observed ASD symptomatology within a group of children and adolescents diagnosed with ASD.

We were able to further explore this question using a second measure of autism symptom severity, the parent-reported SCQ, which was assessed in the TD sample as well as in the ASD sample. To avoid problems with shared method variance, we focus here on the findings for child-reported personality traits. As shows, none of the Big Five traits showed significant correlations with SCQ symptom severity in either the ASD or TD groups, replicating the results obtained for the ADOS and extending the findings from Study 2.

Which personality traits are associated with general maladjustment in the ASD vs. TD groups?

shows correlations of the Big Five traits with internalizing and externalizing symptoms within the ASD and TD groups. In contrast to the results for symptoms specific to ASD (as measured by the ADOS and SCQ), many of these within-group correlations were significant. However, the pattern of findings was somewhat different for the two groups. A moderated multiple regression analysis with the ASD and TD groups pooled together showed that diagnostic status (ASD vs. TD) significantly moderated the effect of Agreeableness on internalizing and the effect of Neuroticism on both internalizing and externalizing. Specifically, lower self-reported Agreeableness was related to more internalizing in the ASD group, r = −.34, p <. 05, whereas the association in the TD group, although nonsignificant, was in the opposite direction, r = .22, ns. Also, Neuroticism according to both sets of reporters was much more strongly associated with internalizing and externalizing in the ASD group relative to the TD group (see for correlations), and, when self-reported, even had a tendency to negatively predict externalizing in the TD group.

It is noteworthy that internalizing and externalizing symptoms were themselves correlated .48 ( p < .01) in the ASD group and only .28 ( p = .05) in the TD group, suggesting that children and adolescents with ASD are more likely to co-experience symptoms of these different forms of psychopathology. Also, as would be expected, individuals with ASD relative to TD individuals were characterized by more internalizing ( M = 64.53, SD = 15.17, vs. M = 45.24, SD = 8.06, t(95) = 7.825, p < .01) and more externalizing ( M = 60.23, SD = 12.40, vs. M = 43.67, SD = 5.31, t(95) = 8.567, p < .01).

General Discussion

The present research investigated two broad questions about individuals with ASD: (1) Do their personality characteristics differ from those of TD individuals?, and (2) Do they have poor insight into these personality characteristics, both in terms of self-other agreement and directional deviations from informant reports?

Personality in Autism

With regard to the first question, Studies 1 and 2 demonstrated that children, adolescents, and young adults with ASD have distinct personality profiles as compared to TD individuals. As hypothesized, individuals with ASD tended to be higher in Neuroticism and lower in Extraversion, Agreeableness, Conscientiousness, and Openness to Experience. These personality differences (a) were observed in samples of children and adolescents as well as adults, (b) were perceived similarly by both self and parents, (c) were similar for males and females, and (d) held after controlling for IQ.

By examining personality in two age cohorts of ASD and TD individuals using the same Big Five measure, we were able to determine that personality is indeed affected in adults with ASD and to delineate a (very) preliminary and tentative understanding of personality trait development from late childhood to young adulthood in ASD. We found trait differences in young adults in Study 1 that were even greater in magnitude than those reported by children and adolescents in Study 2, indicating that personality differences are indeed evident in adults. This finding also presents the possibility that personality differences persist in adulthood and might even increase. More rigorous designs appropriate to these questions, such as longitudinal studies that track stability and change of personality in the same set of individuals with ASD over time, will be important to implement in the future. As Happé and Charlton (2012) observed, the first children ever identified as having "autism" since the term came into clinical use in the 1940s are just now entering old age. Nevertheless, the vast majority of research on autism has ventured no further than adolescence, leaving areas for research on adults with ASD wide open and critical to conduct.

The replication of findings across self and parent reports in Studies 1 and 2 strengthens the claim that these are actual personality differences and do not reflect the unique biases of a particular informant. Also, the inclusion of a sufficient number of girls and women in both ASD cohorts allowed us to determine that the personality traits associated with ASD did not differ for men and women (Study 1) or for boys and girls (Study 2), despite characterization of ASD as a fundamentally "male" syndrome (e.g., as per the "extreme male brain" theory of autism, Baron-Cohen, 2002). Indeed, due to the significantly higher rate of autism among boys, girls are often neglected in research on ASD. Thus, while not a primary aim of the present research, results provide much needed data on the interpersonal and intrapsychic manifestations of ASD in girls and women.

The current research has several implications for understanding the link between autism and personality. First, the findings provide a comprehensive portrait of the personality traits associated with ASD and align with De Pauw et al. (2011) and Kanai et al. (2011) to suggest that the unique attributes of individuals with ASD as manifested in their personality cut across all basic traits: rather than being restricted to the interpersonal domains of the Big Five - Extraversion and Agreeableness - individuals with ASD showed differences in all five domains. As a point of comparison, the alteration of personality in ASD is more extensive than that seen in attention deficit hyperactivity disorder, a condition that shares many characteristics with ASD and that is often comorbid with it, but for which Extraversion and Openness to Experience do not seem to be significantly affected ( Nigg et al., 2002). The only possible exception in the breadth of personality difference was for Openness to Experience, the one dimension for which De Pauw et al. and Kanai et al. yielded divergent findings and, interestingly, the one dimension of the Big Five that is not consistently represented in proposed dimensional models of psychopathology ( Saulsman & Page, 2004; Widiger & Simonsen, 2005).

The current findings also point to which personality traits in ASD are affected most. Effect sizes across Studies 1 and 2 suggest that Neuroticism and Conscientiousness, followed by Agreeableness, were the key areas of group difference. In contrast, De Pauw et al. (2011) pointed to Extraversion followed by Openness, and Kanai et al. (2011) to Neuroticism followed by Extraversion, as the main points of divergence. More work is needed to achieve a coherent understanding of which traits are central to defining ASD relative to normal development and to determine the source of disparity between studies (e.g., cultural moderators of actual vs. apparent differences, other sample characteristics, assessment methods).

Neuroticism was also the best predictor of group membership in the discriminant function analyses. Previous clinical studies have underscored the importance of Neuroticism in differentiating between clinical and non-clinical groups ( Bagby, Costa, Widiger, Ryder, & Marshall, 2005; Morey et al., 2002). As a trait that deals with emotional reactivity, lability, dysregulation, and overall distress, Neuroticism may well serve as a general marker for susceptibility to psychopathology. Especially when combined with low Conscientiousness, Neuroticism paves the way for it ( Muris, 2006). The extent to which then "adding" low levels of Agreeableness and Extraversion results in features consistent with ASD in particular would be profitably explored by using the Big Five to compare ASD to other psychiatric disorders, not just to typically developing individuals. Pinpointing the areas of major impairment at the level of broad personality traits can help researchers appreciate some of the core vulnerabilities associated with ASD and highlight which aspects of functioning to monitor and target in treatment.

In studying ASD within the context of the Big Five, the current research contributes to a growing move toward conceptualizing typical and atypical functioning within a common framework - along a single set of continua. Researchers are currently shifting toward a dimensional trait model for refining the diagnostic system of the DSM ( Adam, 2013; Cuthbert & Insel, 2013; Krueger, Derringer, Markon, Watson, & Skodol, 2011; Widiger & Costa, 2012; Wright et al., in press). The proposed model comprises twenty-five maladaptive personality traits that fall within the five higher-order domains of negative affectivity (e.g., emotional lability, restricted affectivity), social detachment (e.g., withdrawal, intimacy avoidance), antagonism (e.g., manipulativeness, deceitfulness), disinhibition (e.g., impulsivity, rigid perfectionism), and psychoticism (e.g., unusual beliefs and experiences, perceptual dysregulation), all with varying correspondences to the Big Five. This formulation of maladaptive trait levels reflecting and undergirding pathology has tended to focus on personality disorders - themselves largely studied in the context of adulthood - but could be extended to other forms of psychopathology, such as early-emerging developmental disorders like autism.

To be sure, the current studies produced at least three findings that call for caution in treating ASD as dimensional. First, the Big Five, despite offering a valuable taxonomy for describing the full range of personality variation, were far from perfect predictors of ASD vs. TD group membership according to discriminant function analyses, suggesting there is more to ASD than extreme personality trait levels. Second, personality traits explained a negligible portion of the variance in clinician-observed ASD-related behaviors in both of our ASD samples and did not predict variability in parent-rated ASD symptoms within the ASD or TD groups, not even when parents provided all information, in which case trait-symptom associations should have been inflated because of shared method variance. Third, we found disparate links between personality traits and adjustment problems (internalizing/externalizing) in the ASD vs. TD groups, again arguing against continuity across groups. In the TD group, internalizing was related to Neuroticism and low Extraversion, and externalizing, to low Conscientiousness and low Agreeableness, replicating common findings on personality predictors of maladjustment in children ( Prinzie et al., 2003; Van den Akker et al., 2013). However, Neuroticism and low Agreeableness - not low Extraversion - were related to Internalizing in ASD, and Neuroticism in addition to low Agreeableness and low Conscientiousness were related to externalizing in ASD, suggesting that traits have unique relationships with maladjustment in ASD.

In fact, we found a provocative relation between Neuroticism and ASD symptoms in Study 2 that suggests that this trait in the context of ASD, at least in adulthood, may operate differently than would be expected based on the normal personality literature. Neuroticism was negatively related to symptom severity in adults with ASD. That is, higher Neuroticism predicted lower symptoms. Although baffling at first blush, this association actually accords with previous work on ASD and depression. Vickerstaff et al. (2007) found that higher intellectual functioning in individuals with ASD predicted better social functioning but also greater depression because it was associated with greater awareness of social deficits and, thus, lower perceptions of social competence. Other investigators have explained higher rates of depression in higher functioning individuals with ASD in similar ways (Capps, Sigman, & Yirmiya, 1995; Gillberg, 1984; Green, Gilchrist, Burton, & Cox, 2000; Hill, Berthoz, & Frith, 2004). Perhaps adults with ASD are even more likely to show better social functioning alongside greater distress due to their having had more opportunity to experience the discrepancy between their desired vs. actual behavior and outcomes. Future work should directly test the validity of this interpretation and replicate the tendency for more neurotic adults to show lower levels of ASD symptomatology, especially given the tenuousness of this finding when outliers are excluded.

To further probe the dimensionality of ASD, researchers should examine the personality correlates of ASD using a measure of the Big Five that is specifically designed to tap pathological functioning (e.g., the Personality Inventory for DSM-5; Krueger, Derringer, Markon, Watson, & Skodol, 2012). Doing so might allow the five-factor model to explain more of the variance in ASD. For example, Openness, on which we found small group differences, is not the same as its pathology-focused analogue, psychoticism (also labeled schizotypy, oddity, or peculiarity), which contains considerable variation beyond that of typical everyday functioning and encompasses unusual experiences and beliefs, perceptual dysregulation, and eccentric thought ( Krueger et al., 2011; Tackett, Silberschmidt, Krueger, & Sponheim, 2008). In fact, psychoticism might be a dimension where autism especially makes its mark. There is now evidence suggesting that ASD and schizophrenia exist on the same genetically underpinned continuum, labeled "developmental brain dysfunction" ( Moreno-De-Luca et al., 2013), making a dimension that represents aberrant basic perceptual and cognitive processing of reality important to assess in ASD.

Connections between personality and autism may also elucidate the considerable heterogeneity observed within the ASD phenotype. Even if personality did not predict variability in ASD symptom severity in the current research, it could be that personality relates to specific constellations of maladaptive characteristics in ASD. For example, Wing and Gould (1979) distinguished between three subtypes of autism - aloof, passive, and active-but-odd - that differ in characteristics such as the tendency to spontaneously approach others (evidenced only by the active-but-odd type) versus the tendency to amiably respond to others' approaches (evidenced by both the passive and active-but-odd types, but not the aloof type). These characteristics could relate to Big Five traits of Extraversion, Agreeableness, and Neuroticism. In addition, autism often co-occurs with personality disorders. Lugnegård, Hallerbäck, and Gillberg (2012) found that 48% of a sample of individuals with Asperger's syndrome met criteria for schizoid, avoidant, obsessive-compulsive, or schizotypal personality disorders, and remarked that ASD comorbid with schizoid personality disorder seemed to correspond to the "aloof" type from Wing's classification. Perhaps personality can help flag autism that runs alongside other conditions that have personality dysfunction at their heart. Assessing differential standing on the Big Five could thus facilitate a more nuanced characterization of autism and its myriad manifestations.

One question that cannot be answered by the present research is how to explain the link between personality and autism. Tackett (2006) described several non-mutually exclusive models that seem applicable in the present context. First, the spectrum model proposes that personality traits and psychopathology lie on a single continuum, with psychopathology being a more extreme manifestation of a particular trait or set of traits. Second, the vulnerability or predisposition model proposes that certain personality traits put children and adolescents at greater risk for developing a particular form of psychopathology. Third, the scar or complication model proposes that psychopathology changes, or influences the development of, personality traits. Fourth, the pathoplasty or exacerbation model proposes that personality traits shape the way psychopathology manifests, perhaps channeling the phenotypic expression of the underlying disorder into a subtype. Longitudinal studies, beginning early in development, are needed to test these different possibilities. In addition, it would be helpful to track the biological mechanisms common to personality traits and ASD. For example, the neuropeptide oxytocin, which appears to play a critical role in the formation and maintenance of social behavior from infancy onward with implications for Agreeableness, may be deficient and part of an underdeveloped system in autism ( Carter, 2007).

Finally, by situating autism within the Big Five framework, we can link the condition to all other psychological constructs and outcomes that have been related to the Big Five. Research has indicated that all five dimensions (i.e., for the most part, higher Extraversion, Agreeable-ness, Conscientiousness, Openness, and lower Neuroticism) are associated with successful life outcomes, and that opposite standing on these dimensions contributes to problematic outcomes ( Mullins-Sweatt & Widiger, 2010; Ozer & Benet-Martinez, 2006). Indeed, a latent class analysis conducted by De Clercq, Rettew, Althoff, and de Bolle (2012) found that this same trait profile we found for ASD individuals - that is, of systematically lower trait levels relative to the modal personality profile - represented the most "vulnerable" personality profile, with the highest associations with various forms of psychopathology (but not including ASD). Based on their Big Five personality profile, individuals with ASD are more likely to have poor performance at school and work; less satisfying and less stable romantic relationships; less social acceptance; less social support; lower subjective well-being and more distress; and to experience more health problems and shorter lifespans ( Ozer & Benet-Martinez, 2006). Many of these outcomes have, in fact, been documented in individuals with ASD, and the present findings suggest that we can turn to personality as one explanatory mechanism.

Self-Insight in Autism

The current research contributes to abiding questions about whether individuals with autism have self-insight. Despite a widespread and longstanding assumption that they do not, we found individuals with ASD showed significant levels of understanding into their personality across different operationalizations of self-insight. Using a trait-centered approach, ASD individuals showed significant self-other agreement for four of the Big Five dimensions. Although these correlations were far from perfect, the level of agreement was similar to that in the TD individuals. Using a person-centered approach, ASD and TD individuals showed similar distinctive agreement, that is, agreement on their unique profile of defining traits. These findings suggest that individuals with ASD have a reasonable degree of insight into their own personalities. They recognize, at least to some extent, that they tend to be socially withdrawn and inhibited; less soft-hearted, empathic, and warm; less organized and responsible; and less emotionally stable, with more frequent and intense bouts of anxiety and sadness, than TD individuals. They also recognize, at least to some extent, the differential extent to which these qualities define them.

Agreement in the ASD group was highest for Neuroticism. Neuroticism is the personality dimension that, perhaps as a function of dealing extensively with negative affective states, most set apart ASD and TD individuals according to mean-level group differences and discriminant function analyses in both studies. Finding high self-other agreement in the ASD group for this domain relative to the others is noteworthy as well as counterintuitive given that alexithymia is fairly common in individuals with ASD ( Ben Shalom et al., 2006; Berthoz & Hill, 2005; Hill, Berthoz, & Frith, 2004) and given that Neuroticism usually elicits the lowest level of self-other agreement in TD individuals - as it did in our TD sample - partly because its indicators are less observable to informants ( John & Robins, 1993; Funder, 1999).

It could be that the high levels of Neuroticism in individuals with ASD made aspects of this dimension sufficiently salient to the individuals and observable to others to allow for high agreement. Consistent with this, Furr, Dougherty, Marsh, & Mathias (2007) found across a sample of children with and without conduct disorder that self-other agreement was higher for traits central to the pathology than for those less relevant. It could also be that children with ASD are encouraged to talk about their thoughts and feelings, particularly those dealing with anxiety and upset, as those are a major issue for them and may be explicitly confronted with parents, teachers, and therapists, promoting higher agreement. Consistent with this, studies examining whether ASD individuals have insight into their specific psychiatric symptoms - termed "clinical insight" ( Beck et al., 2004) - as well as life difficulties stemming from them, such as academic and physical problems, suggest moderately high self-other agreement (median r = .45), although with a very broad range of results across studies (range = −.08 to .73) ( Farrugia & Hudson, 2006; Johnson et al., 2009; Knott et al., 2006; Koning et al., 2001; Vickerstaff et al., 2007).

However, there was one personality dimension - Extraversion - for which self-other agreement was significantly lower in the ASD group relative to the TD group, a difference in part attributable to the superior self-insight of TD individuals for this dimension above all others, itself a common finding in the personality judgment literature due to its high observability (e.g., John & Robins, 1993; Funder, 1999). Given that self-reported Extraversion in children with ASD was not systematically biased relative to parent reports, the lower agreement suggests a greater amount of "noise" (i.e., random error) in the self-perception of individuals with ASD for this dimension. One possibility is that individuals with ASD used more transient reference points when gauging their level of Extraversion, perhaps basing their reports on their latest social interaction; that is, the "noise" could be attributed to state effects. Another possibility is that some children with ASD compare themselves to others with ASD, leading to an overestimation of their Extraversion level, whereas others compare themselves to TD individuals, leading to a more accurate (or perhaps even underestimation) of their Extraversion level; such individual differences would attenuate the magnitude of child-parent agreement. Finally, because individuals with ASD have selectively social deficits, some individuals could have had difficulty understanding the questions that probed Extraversion. This lack of Expertise ( Funder, 1995) could also explain why self-other agreement for Conscientiousness in ASD was so low that it failed to reach significance.

Overall, finding a significant level of self-insight in ASD prompts a host of intriguing questions. For example, what is the process by which individuals with ASD are able to know themselves? The items on the BFI would have called for individuals' being familiar not only with their internal states (e.g., "is depressed, blue") but also their social proclivities (e.g., "is helpful and unselfish with others"), relative mental aptitudes (e.g., "is ingenious, a deep thinker"), and even how they are perceived by and/or affect others (e.g., "generates a lot of enthusiasm"). Relatedly, what does the success of individuals with ASD with self-description say about the three pathways that we distinguished in the literature for how self-knowledge can break down or be preempted in ASD? The present findings suggest that individuals with ASD have sufficient introspective capacity, sufficient mastery of concepts for tracking their personal attributes (such that they can recognize and use these concepts), and may even have sufficient experience with and understanding of the social world to learn about their personality traits and how they come across to others, at least to their parents. As mentioned, it could be that individuals with ASD get a generous amount of explicit feedback about themselves due to their condition. More research is needed to determine the possible sources of self-knowledge in ASD. For example, research can utilize measures of self-consciousness and self-reflection, inner speech, social comparison, Theory of Mind and other processes for understanding implicit social feedback, quantity and quality of available explicit social feedback and performance information, and size and composition of social networks, to determine whether, and to what extent, they mediate accurate self-knowledge in ASD.

Indeed, given our findings, it is interesting that even individuals with ASD themselves do not think they know themselves well. Adults with ASD do not believe they have any more insight into their inner states and personal traits than close others have about them, whereas non-clinical controls consider themselves the "self"-experts ( Mitchell & O'Keefe, 2008). Similarly, Dritschel, Wisely, Goddard, Robinson, & Howlin (2010) found that adolescents with ASD believe that close others have more knowledge about their internal states and qualities than they do. This is remarkable, given that most people take for granted that they know themselves better than others know them, even for attributes for which this is not the case ( Vazire, 2010). One intriguing possibility is that trait self-knowledge is preserved in the face of other disturbances in self-perception. Instances like this have been documented by Klein and his colleagues for several disorders, most recently for schizophrenia ( Klein, Altinyazar, & Metz, in press). Their work has led them to suggest that self-knowledge "is impervious to a host of cognitive and neuropsychological insults capable of rendering other systems of knowledge partially or fully inoperable" and that trait self-knowledge may be "an unusually robust, evolutionarily ancient social adaptation" (p. 4).

In addition to assessing self-insight in terms of agreement, we also examined the tendency for ASD and TD individuals to show systematic directional deviations (self-enhancement vs. self-diminishment) in their personality trait ratings. The ASD group tended to provide overly favorable reports of their personality, whereas the TD group tended to provide unfavorable reports, relative to parent reports. Here, questions arise as to the underlying reasons for self-enhancement in individuals with ASD. Notably, self-enhancement is not an uncommon phenomenon. Research with TD individuals has found that "[m]ost people, most of the time, see themselves through rose-colored glasses" ( Sedikides, Horton, & Gregg, 2007, p. 783). Studies comparing self-evaluations to an external criterion have generally found a small self-enhancement effect -- typically around a third of a standard deviation (e.g., John & Robins, 1994; 1997) -- that reflects the presence of substantial individual differences in the degree and direction of bias. In the present research, self-enhancement was found only in the ASD sample, with effect sizes surpassing .80 standard deviations for Conscientiousness and Neuroticism. Whereas cognitive and motivational factors have been invoked to explain self-enhancement in TD individuals ( Schriber & Robins, 2012), it is not clear that the same processes account for self-enhancement in individuals with ASD. For example, in TD individuals, narcissism is strongly associated with the tendency to self-enhance (e.g., John & Robins, 1994). Could it be that individuals with ASD are more narcissistic than TD individuals?

Without using the term "narcissistic," Attwood (2007) suggested that individuals with ASD, especially those with superior intellectual abilities, (1) may overcompensate for feelings of inadequacy in social situations by becoming "arrogant and egocentric" (p. 20); (2) "have considerable difficulty acknowledging that they have made a mistake... can be hypersensitive to any suggestion of criticism, yet overly critical of others, including teachers, parents or authority figures" (p. 21); and (3) turn "a lack of ability in social play with peers and in interactions with adults [into] behaviors to achieve dominance and control" (p. 26). Frith and colleagues similarly call attention to a certain self-absorption intrinsic to ASD, terming it naïve egocentrism ( Frith & de Vignemont, 2005). When the low Agreeableness that characterizes individuals with ASD is thrown into the mix, these individuals might have the makings of a narcissist. However, no studies to date have examined a link between autism and narcissism. Only one exploratory study, Abell and Hare (2005), nods at the issue with observations of elevated levels of grandiose and persecutory delusions in a sample of adult males with Asperger's. Thus, evaluating narcissism in ASD in future studies could be one way to unpack the positivity bias seen in the present research.

Another issue raised by the current findings is whether the parents themselves - the measure of the "truth" - are differentially biased toward ASD vs. TD children. For example, the positive biases seen in the ASD sample could actually reflect excessive harshness on the part of the parents, rather than the overly rosy self-views of individuals with ASD. Years of learning about and living with a child with ASD might lead parents to be more knowledgeable of, observant of, and acutely sensitive to autism-related traits and other perceived shortcomings in their children. As such, the parents of individuals with ASD might be liable to assign ratings that are excessively unfavorable, their failing to see their children with dispassionate eyes when considering their attributes. Following this reasoning, it is possible that in Study 2, the difference in Openness to Experience, which only held for the parent reports, reflects the unique perspective of parents toward their children with ASD, rather than an actual tendency for children and adolescents with ASD to be less exploratory, imaginative, and creative than TD children and adolescents. Ultimately, to assuage the concern of observer harshness and to further investigate self-criterion agreement and positive bias in ASD, future work should introduce other criterion measures, such as objective behavioral measures and ratings along the trait parameters by observant yet less emotionally involved informants (e.g., clinicians).

Taken together, the present findings provide evidence that individuals with autism have distinct personality traits and a reasonable degree of insight into their relative standing on these traits, with a tendency to provide systematically overly favorable ratings of themselves. A better understanding of the personality and self-evaluative processes in individuals with ASD could have important ramifications for how to conceptualize and treat autism, as well as for how to understand the interface between personality, self-insight, and pathological functioning more generally. We may ask, for example, what is the relation between personality, self-insight, and the potential for personality change in autism? Also, is self-insight in autism associated with better outcomes for individuals with ASD either intrapsychically (e.g., subjective well-being) or interpersonally (e.g., social functioning) or both? We hope our findings pave the way for more research on personality traits in individuals with ASD and on the nature and extent of their insight into these and other aspects of themselves.

Acknowledgments

This research was supported by National Institute of Child Health and Human Development Grant HD064687 to Roberta A. Schriber, National Institute on Drug Abuse Grant DA017902 to Richard W. Robins, and National Institute of Mental Health Award 1-K-08 MH074967-01 and Building Interdisciplinary Research Careers in Women's Health Award K12 HD051958 funded by the National Institute of Child Health and Human Development, Office of Research on Women's Health, Office of Dietary Supplements, and National Institute of Aging to Marjorie Solomon.

Footnotes

¹ The revised ASD diagnostic criteria for the updated DSM-V places all variants of ASD diagnosis (e.g., Asperger's syndrome, high-functioning autism) under the general umbrella of "autism spectrum disorder" and collapses the three criterion domains of social impairment, communication impairment, and fixated interests/repetitive behaviors into two: social/communication impairment and fixated interests/repetitive behaviors (APA, 2010). Recent work (Huerta, Bishop, Duncan, Hus, & Lord, 2012) suggests the majority of individuals with DSM-IV ASD diagnoses are eligible for an ASD diagnosis under the revised criteria.

²We also examined whether group differences emerged at the facet level (Soto & John, 2009), for which the BFI includes facets of: Assertiveness and Activity (Extraversion); Altruism and Compliance (Agreeableness); Order and Self-Discipline (Conscientiousness); Anxiety and Depression (Neuroticism); and Ideas and Aesthetics (Openness). In Study 1, all trait-level group differences replicated at the facet level, except no group difference was found for Aesthetics. In Study 2, all trait-level group differences replicated at the facet level for parent reports, but were not significant for Assertion, Order, or Aesthetics, and only marginally significant for Depression, p = .10, in child self-reports. Repeated-measures ANOVAs, with Group (ASD vs. TD) as the between-subjects factor and Facet as the within-subjects factor, revealed no Group × Facet interactions in either study.

³ In both Studies 1 and 2, all ASD vs. TD differences in personality remained significant after controlling for age as well.

⁴ Although the BFI has not been validated for children under 10, alpha reliabilities in the subsample of 8- and 9-year old children reached satisfactory levels (albeit somewhat lower than in the full sample), ranging from .44 (Extraversion) to .77 (Agreeableness) for self- reports and from .87 (Extraversion) to .91 (Neuroticism) for parent reports.

⁵Consistent with the idea that higher intellectual functioning is related to self-insight, we found that IQ in the ASD group was associated with distinctive agreement, r = .30, p < .05; this association was not significant in the TD group, r = .14, ns. However, in consistent with the idea that higher self-insight is related to better social functioning, we found no significant associations between distinctive agreement and ASD symptom severity or internalizing/externalizing, either within or across the ASD and TD groups.

Contributor Information

Roberta A. Schriber, Department of Psychology, University of California, Davis, Davis, CA, U.S.A.

Richard W. Robins, Department of Psychology, University of California, Davis, Davis, CA, U.S.A.

Marjorie Solomon, University of California, Davis School of Medicine, Department of Psychiatry, MIND Institute, Imaging Research Center, Sacramento, CA, U.S.A.

References

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# data[].attributes.attachment_link.title
Personality and Self-Insight in Individuals with Autism Spectrum Disorder

# data[].attributes.attachment_link.description
Autism spectrum disorder (ASD) involves widespread difficulties in social interaction, communication, and behavioral flexibility. Consequently, individuals with ASD are believed to exhibit a number of unique personality tendencies, including a lack of insight into them. However, surprisingly little research has examined these issues.

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Chapter 21: Why do people with Autism talk so weirdly?

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Chapter 21: Why do people with Autism talk so weirdly?

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"There are times when I can’t do what I want to, or what I have to. It doesn’t mean I don’t want to do it. I just can’t get it all together, somehow. Even performing one straightforward task, I can’t get started as smoothly as you can."

Higashida, Naoki. The Reason I Jump (p. 40).

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The majority of people with autism do use spoken language. Few, however, use it in exactly the same way as people without autism. In some cases, the differences are quite marked. In others, while the differences are subtle, they are obvious to native speakers of the same language.​​ Some differences relate to the correct use of spoken language and grammar. In addition, however, many differences relate not to the selection of correct words but to intonation, eye contact, and body language.

How Children With Autism Are Taught to Converse

Children with autism very often have delayed or "disordered" speech. They may recite scripts from television without understanding their meaning, repeat phrases, or make sounds that have no meaning. Most work with speech and behavioral therapists to learn the correct use of spoken language. More advanced language users are taught how to use language appropriately and interactively.

Social skills therapists and coaches also work on speech and conversation skills. Some of the specific skills they teach, for example, are how to ask and answer a question; how to choose appropriate topics of conversation; how to make eye contact; and how to use and notice body language.﻿﻿ For example, social skills therapists may teach a person with autism how to recognize sarcasm and humor by watching facial expressions and body positioning.

Why People With Autism Have Difficulty With Conversation

Lots of training and practice can certain improve fluency and skill. But very few people on the spectrum become so fluent in conversation that they sound and appear absolutely ​ typical. There are also some issues that can actually be caused by social skills training. Here are some of the challenges autistic conversationalists face:

1. Quite a few people on the spectrum don't process language as rapidly as typical peers. As a result, they may take longer to make sense of a statement, craft an appropriate response, and then say what's on their mind. Most typical conversation moves rapidly, and thus people on the spectrum are often left behind.

2. Most people on the spectrum have difficulty with separating sarcasm and humor from statements of fact. Abstract ideas and idioms are also tricky. As a result, they are likely to respond inappropriately-unless the speaker is careful to explain his or her meaning or intent.

3. People with autism often speak with a different rhythm, prosody, and/or volume than typical peers. Thus, even if the words themselves are appropriate, they may sound flat, loud, soft, or otherwise different.

4. It's not unusual for people with autism to "script" their conversations. In other words, they may borrow phrases from TV, videos, or even social skills groups or social stories. This strategy allows them to respond quickly with appropriate language-but when someone recognizes the phrases as coming from Sponge Bob or Thomas the Tank Engine, the results can be embarrassing.

5. In some cases, people with autism repeat themselves more often than their typical peers. So a perfectly reasonable question ("When are we going to dinner?" for example) can turn into a refrain when the question is asked over and over again in exactly the same way, with precisely the same intonation.

6. People with autism are often over-focused on their particular interests. As a result, they may use conversational tools as a "wedge" to create an opportunity to talk at length about their preferred topic ("Who's your favorite Disney character? Mine is Belle. Belle is French, and she..."). This is fine in some situations, but it often leads to frustration on the part of conversational partners.

7. Social skills training, while it can be helpful, can also create misunderstandings about how spoken and body language should be used in specific settings. For example, while hand-shakes are appropriate in formal situations they are rarely appropriate within a group of children. And while the question "How was your weekend?" is perfectly reasonable in the office, it's inappropriate in a playgroup.

8. Some social skills are over-emphasized by therapists, leading to odd behaviors. For example, while it's probably a good idea to look your conversational partner in the eye for at least a second or two, eyeball-to-eyeball conversations are very uncomfortable for most people.

Few people with autism are able to master the art of conversation to the point where they are indistinguishable from their neurotypical peers. Most, however, are more than capable of developing solid conversational skills, and, in most cases, interact successfully in a variety of settings. For most people, a combination of therapies, video modeling, and plenty of practice are the keys to success.﻿﻿

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Reasons Why Conversation Is Tough for People With Autism

# data[].attributes.attachment_link.description
The majority of people with autism do use spoken language. Few, however, use it in exactly the same way as people without autism. In some cases, the differences are quite marked. In others, while the differences are subtle, they are obvious to native speakers of the same language.​​ Some differences relate to the correct use of spoken language and grammar.

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Chapter 22: Do you hate it when we make you do things?

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Chapter 22: Do you hate it when we make you do things?

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"That’s just the way we are. On our own we simply don’t know how to get things done the same way you do them. But, like everyone else, we want to do the best we possibly can. When we sense you’ve given up on us, it makes us feel miserable. So please keep helping us, through to the end."

Higashida, Naoki. The Reason I Jump (p. 42).

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Changing routines: autistic children and teenagers

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Changing routines can be hard for autistic kids and teens. Preparing them for expected and unexpected change helps. Try social stories, schedules and more.

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"Autisman: So—welcome to my home world.
Earthling: Don’t you feel weighed down? It feels as if I’ve got weights strapped to my arms and legs.
Autisman: Ah, but on your planet, I always feel as if I’m swimming around in space, weightlessly. Earthling: Okay. Now I understand you. I really understand."

Higashida, Naoki. The Reason I Jump (p. 46).

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Description

"One of the most remarkable books I've ever read. It's truly moving, eye-opening, incredibly vivid."-Jon Stewart, The Daily Show
NAMED ONE OF THE BEST BOOKS OF THE YEAR BY FINALIST FOR THE BOOKS FOR A BETTER LIFE FIRST BOOK AWARD * NEW YORK TIMES BESTSELLER
NPR * The Wall Street Journal * Bloomberg Business * Bookish
You've never read a book like The Reason I Jump. Written by Naoki Higashida, a very smart, very self-aware, and very charming thirteen-year-old boy with autism, it is a one-of-a-kind memoir that demonstrates how an autistic mind thinks, feels, perceives, and responds in ways few of us can imagine. Parents and family members who never thought they could get inside the head of their autistic loved one at last have a way to break through to the curious, subtle, and complex life within.
Praise for The Reason I Jump
Using an alphabet grid to painstakingly construct words, sentences, and thoughts that he is unable to speak out loud, Naoki answers even the most delicate questions that people want to know. Questions such as: "Why do people with autism talk so loudly and weirdly?" "Why do you line up your toy cars and blocks?" "Why don't you make eye contact when you're talking?" and "What's the reason you jump?" (Naoki's answer: "When I'm jumping, it's as if my feelings are going upward to the sky.") With disarming honesty and a generous heart, Naoki shares his unique point of view on not only autism but life itself. His insights-into the mystery of words, the wonders of laughter, and the elusiveness of memory-are so startling, so strange, and so powerful that you will never look at the world the same way again.

In his introduction, bestselling novelist David Mitchell writes that Naoki's words allowed him to feel, for the first time, as if his own autistic child was explaining what was happening in his mind. "It is no exaggeration to say that The Reason I Jump allowed me to round a corner in our relationship." This translation was a labor of love by David and his wife, KA Yoshida, so they'd be able to share that feeling with friends, the wider autism community, and beyond. Naoki's book, in its beauty, truthfulness, and simplicity, is a gift to be shared.

"This is an intimate book, one that brings readers right into an autistic mind." -Chicago Tribune (Editor's Choice)

"Amazing times a million." -Whoopi Goldberg, People

" The Reason I Jump is a Rosetta stone. . . . This book takes about ninety minutes to read, and it will stretch your vision of what it is to be human." -Andrew Solomon, The Times (U.K.)

"Extraordinary, moving, and jeweled with epiphanies."-The Boston Globe

"Small but profound . . . [Higashida's] startling, moving insights offer a rare look inside the autistic mind." -Parade

About the Author

Naoki Higashida was born in Kimitsu, Japan in 1992. Diagnosed with severe autism when he was five, he subsequently learned to communicate using a handmade alphabet grid and began to write poems and short stories. At the age of thirteen he wrote The Reason I Jump, which was published in Japan in 2007. Its English translation came out in 2013, and it has now been published in more than thirty languages. Higashida has since published several books in Japan, including children's and picture books, poems, and essays. The subject of an award-winning Japanese television documentary in 2014, he continues to give presentations throughout the country about his experience of autism.

David Mitchell is the author of seven novels, including Cloud Atlas, The Bone Clocks, and, most recently, Slade House. KA Yoshida was born in Yamaguchi, Japan, and specialized in English poetry at Notre Dame Seishin University. KA Yoshida and David Mitchell live in Ireland with their two children.

Praise For...

"One of the most remarkable books I've ever read. It's truly moving, eye-opening, incredibly vivid." -Jon Stewart, The Daily Show

"Please don't assume that The Reason I Jump is just another book for the crowded autism shelf. . . . This is an intimate book, one that brings readers right into an autistic mind-what it's like without boundaries of time, why cues and prompts are necessary, and why it's so impossible to hold someone else's hand. Of course, there's a wide range of behavior here; that's why 'on the spectrum' has become such a popular phrase. But by listening to this voice, we can understand its echoes." -Chicago Tribune (Editor's Choice)

"Amazing times a million." -Whoopi Goldberg, People

" The Reason I Jump is a Rosetta stone. . . . I had to keep reminding myself that the author was a thirteen-year-old boy when he wrote this . . . because the freshness of voice coexists with so much wisdom. This book takes about ninety minutes to read, and it will stretch your vision of what it is to be human." -Andrew Solomon, The Times (U.K.)

"Extraordinary, moving, and jeweled with epiphanies."-The Boston Globe

"Small but profound . . . [Naoki Higashida's] startling, moving insights offer a rare look inside the autistic mind." -Parade

"Surely one of the most remarkable books yet to be featured in these pages . . . With about one in 88 children identified with an autism spectrum disorder, and family, friends, and educators hungry for information, this inspiring book's continued success seems inevitable." -Publishers Weekly

"We have our received ideas, we believe they correspond roughly to the way things are, then a book comes along that simply blows all this so-called knowledge out of the water. This is one of them. . . . An entry into another world." -Daily Mail (U.K.)

"Every page dismantles another preconception about autism. . . . Once you understand how Higashida managed to write this book, you lose your heart to him." -New Statesman (U.K.)

"Astonishing. The Reason I Jump builds one of the strongest bridges yet constructed between the world of autism and the neurotypical world. . . . There are many more questions I'd like to ask Naoki, but the first words I'd say to him are 'thank you.'" -The Sunday Times (U.K.)

"This is a guide to what it feels like to be autistic. . . . In Mitchell and Yoshida's translation, [Higashida] comes across as a thoughtful writer with a lucid simplicity that is both childlike and lyrical. . . . Higashida is living proof of something we should all remember: in every autistic child, however cut off and distant they may outwardly seem, there resides a warm, beating heart." -Financial Times (U.K.)

"Higashida's child's-eye view of autism is as much a winsome work of the imagination as it is a user's manual for parents, carers and teachers. . . . This book gives us autism from the inside, as we have never seen it. . . . [Higashida] offers readers eloquent access into an almost entirely unknown world." -The Independent (U.K.)

" The Reason I Jump is a wise, beautiful, intimate and courageous explanation of autism as it is lived every day by one remarkable boy. Naoki Higashida takes us 'behind the mirror'-his testimony should be read by parents, teachers, siblings, friends, and anybody who knows and loves an autistic person. I only wish I'd had this book to defend myself when I was Naoki's age." -Tim Page, author of Parallel Play and professor of journalism and music at the University of Southern California

"[Higashida] illuminates his autism from within. . . . Anyone struggling to understand autism will be grateful for the book and translation." -Kirkus Reviews

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The Reason I Jump: The Inner Voice of a Thirteen-Year-Old Boy with Autism (Paperback)

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"One of the most remarkable books I've ever read. It's truly moving, eye-opening, incredibly vivid."-Jon Stewart, The Daily Show NAMED ONE OF THE BEST BOOKS OF THE YEAR BY FINALIST FOR THE BOOKS FOR A BETTER LIFE FIRST BOOK AWARD * NEW YORK TIMES BESTSELLER NPR * The Wall Street Journal * Bloomberg Business * Bookish You've never read a book like The Reason I Jump.

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Chapter  28: Why do you move your arms and legs in that awkward way? 

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Chapter  28: Why do you move your arms and legs in that awkward way? 

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"In my gym class, the teacher tells me to do things like “Stretch your arms!” and “Bend at the knees!” But I don’t always know what my arms and legs are up to, not exactly. For me, I have no clear sensation of where my arms and legs are attached, or how to make them do what I’m telling them to do. It’s as if my limbs are a mermaid’s rubbery tail."

Higashida, Naoki. The Reason I Jump (p. 52)

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For 6-year-old Macey, lunchtime at school is not so much a break from reading and math as it is an hour rife with frustration.

Here's how Macey's mother, Victoria, describes Macey's typical lunch break: In her special-education classroom an hour north of San Francisco, Macey's classmates gather at a big square table, chattering away and snatching one another's food. Macey, meanwhile, is sequestered away at a small white table in a corner, facing a bookshelf. She grabs the handle of a spoon using the palm of her right hand, awkwardly scoops up rice and spills it onto her lap. She wants to be at the big table with her peers, but she sits with an aide away from the other children to minimize distractions while she eats. (Victoria requested that we use her and Macey's first names only, to protect their privacy.)

After lunch, the children spill out onto the playground. Macey, wearing a helmet, trails behind, holding her aide's hand. She can walk, but she often trips on uneven surfaces and falls over. She tends to misjudge heights, and once pulled a muscle while climbing on playground equipment. When she was 3, she tripped and fell headfirst out of a sandbox, scraping her face, chipping one tooth and dislodging another.

Macey has little trouble moving around the house because it has few stairs and her mother never changes the layout of the rooms. Victoria's biggest concern is that Macey's movement troubles interfere with her social life.

Macey is naturally social: She likes interacting with adults but sometimes gets frustrated when they don't understand her. It's even more difficult with her peers. One afternoon last year, Macey watched her older brother and her cousins ride their bicycles in front of the house. When her brother took a break and laid his bicycle down on its side, Macey shuffled over and tried to climb on. "But there was no way," Victoria recalls. "She's wobbly, and I was afraid she would fall off and hurt herself." Victoria gently led her daughter away from the bicycle. Tears began to stream down Macey's face as she shouted, "I want bike!"

Macey will probably have these motor problems her entire life. They are a characteristic feature of her condition: She has an extra copy of a small stretch of DNA on chromosome 15, which causes a condition called dup15q syndrome. Like most children with the syndrome, Macey also has autism.

About 80 percent of people with autism have some sort of movement problem, ranging from clumsiness or a mechanical style of walking to more profound difficulties like Macey's. "It is very, very common for children with autism to have clear impairments in their motor control," says Stewart Mostofsky, director of the Center for Neurodevelopmental and Imaging Research at the Kennedy Krieger Institute in Baltimore, Maryland.

Despite their prevalence, movement problems are not considered a core feature of autism - that is, they are not required for an autism diagnosis. And they are understudied compared with the social difficulties and repetitive behaviors that define the condition. "For many years, it has been ignored as a challenge that children with autism experience," says Nicole Rinehart, director of the Deakin Child Study Centre at Deakin University in Melbourne, Australia.

A few scientists, including Rinehart and Mostofsky, are precisely measuring the movements of children like Macey to find brain features that might underlie motor difficulties. Because motor problems often emerge in infancy, well before other features of autism, some researchers are pursuing a provocative idea: Movement problems might be one source of the social difficulties in people with autism.

The theory goes like this: Children who have trouble exploring their environments miss out on opportunities for social interactions, making it difficult for them to learn communication and social skills. Later on in childhood, their clumsiness prevents them from participating in group activities, worsening their social problems. This is a controversial idea, but if true, it means that therapies that teach people with autism how to move more fluently could also help them interact with others.

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For 6-year-old Macey, lunchtime at school is not so much a break from reading and math as it is an hour rife with frustration. Here's how Macey's mother, Victoria, describes Macey's typical lunch break: In her special-education classroom an hour north of San Francisco, Macey's classmates gather at a big square table, chattering away and snatching one another's food.

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Chapter 30: Why are you too sensitive or insensitive to pain? 

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Chapter 30: Why are you too sensitive or insensitive to pain? 

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"I don’t think this is all to do with nerves and nerve endings. It’s more a matter of “inner pain” expressing itself via the body. When memories suddenly come to people, we experience a flashback—but in the case of people with autism, memories are not stored in a clear order. For those of us who are disturbed by having their hair and nails trimmed, somehow their negative memories are probably connected to the action."

Higashida, Naoki. The Reason I Jump (p. 55)

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As a child, Noah hated when his mother vacuumed the house. "She would put the vacuum on the wood floor, not the carpet," he remembers. "And that's really loud, so it would really freak me out."

Noah, who asked that his last name be withheld, was diagnosed with a mild form of autism called Asperger syndrome as a college student (Asperger syndrome has since been subsumed into the larger category of autism spectrum disorder).

Now in his early 30s, he counsels other men with autism and teaches psychology in Boston. But as a child, he didn't realize his sensory world was different from other people's experiences.

"At first I would scream and yell for her to stop, but she had no concept that what she was doing was irritating," Noah says. "And I had no idea that what I was feeling was not what everyone else felt."

Noah eventually came to accept that the noise of the vacuum, like many other sensory experiences, was something he just had to suffer through. As a result, "I was very numbed off," he says. "I could handle really intense cold or even pain and not do anything, not feel too much."

Noah's experience illustrates the paradox of pain in autism. On the one hand, some people with autism can tolerate extreme heat, cold or pressure and seem relatively insensitive to pain. On the other hand, they may experience intense pain from idiosyncratic sources but struggle to communicate it.

"It's interesting to me that those two ideas can be held in mind at the same time by the field," says Matthew Lerner, assistant professor of psychology, psychiatry and pediatrics at Stony Brook University in New York.

A closer look at the literature confirms that although some people with autism are insensitive to pain, others are unusually vulnerable to it. Sensory sensitivities - exaggerated reactions to certain sounds, lights or other stimuli - affect up to 70 percent of people with autism. Pain may emanate from autism-related health issues such as gastrointestinal problems. And difficulties with sleep, anxiety and perseveration, or the tendency to fixate on a particular thought - all common features in people with autism - may intensify pain.

Recognizing this pain is a serious challenge, however, because people with autism have unusual ways of expressing it. This, too, may feed into a perception that they don't feel pain.

"That's really intensely problematic when it comes to injections or medical interventions for people with autism," says Clare Allely, lecturer in psychology at the University of Salford in Manchester, U.K.

One French study found, for example, that fewer than half of children with autism were given a local anesthetic before having blood drawn, even though this practice was routine for typical children.

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Unseen agony: Dismantling autism's house of pain

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As a child, Noah hated when his mother vacuumed the house. "She would put the vacuum on the wood floor, not the carpet," he remembers. "And that's really loud, so it would really freak me out."

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Chapter 31: Why are you so picky about what you eat?

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Chapter 31: Why are you so picky about what you eat?

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"We do this business called eating three times a day, but for some people having to eat different meals each time can be a major headache. Each type of food has its distinct taste, color and shape. Usually, these differences are what make eating a pleasure, but for some people with autism, only those foodstuffs they can already think of as food have any taste."

Higashida, Naoki. The Reason I Jump (p. 57)

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"What is it about autism and food? It seems to provide our son with such comfort. But his narrow focus becomes an obsession that leads to meltdowns."

This week's "Got Questions?" answer comes from psychologist Emily Kuschner, of The Children's Hospital of Philadelphia, a member of the Autism Speaks Autism Treatment Network. With the support of an Autism Speaks research grant, Dr. Kuschner is developing and testing a cognitive behavioral treatment program that addresses the complex reasons behind narrow food choices in many individuals with autism.
Research has backed up what you've experienced firsthand. Food overlaps with many aspects of life that challenge the coping skills of individuals with autism spectrum disorder (ASD). These can include extreme sensitivity to change and sensory stimuli, as well as an intense focus on details.

For instance, many children and adults on the spectrum are extremely sensitive to not just flavor, but also the color, smell and texture of foods. Many also have strong preferences for a narrow selection of foods. Some even feel compelled to have certain foods in the same place on the plate or to use the same plate at each meal.

Of course, we all have food preferences and most of us find food comforting. However, these natural tendencies can become exaggerated for a person with ASD. In other words, your son's focus on food - like his other special interests - may be particularly intense.

On top of this, many individuals with autism have difficulty describing what they like or dislike about certain foods. So it can be difficult to determine what it is about a certain food that's so important - or upsetting - to your son. And that increases the risk of meltdowns.

Research also tells us that many individuals with autism tend to have strong preferences for carbohydrates and processed foods, while rejecting fruits and vegetables. This, too, may reflect an aversion to strong tastes and textures. Unfortunately, it can lead to nutritional deficiencies and excessive weight gain, especially if exercise is limited.

The need for sameness that is common in ASD may also make it difficult to introduce new foods to your son's diet. Just as a substitute teacher can prove extremely upsetting for children with autism, so can unexpected foods on their plates!

Put it all together, and meals can become emotionally loaded for everyone in the family. So let me offer a few tips.

Coping strategies

In general, it's important to avoid making food a chronic source of conflict. When you sense a food-related meltdown approaching, try to defuse the situation as you would any other potential meltdown. Use your tried-and-true coping strategies. For example, a deep breath and a break from the conversation. You might make a visual schedule to establish a plan for mealtime or negotiate a reward that could be earned for completing a task such as trying a new food.

When introducing a new food, remember that a touch of consistency can help keep things calm. So include one or two old favorites in every meal along with any new introduction.

Go softly in introducing new foods. You can try the age-old "try one bite," or start with asking your son to just smell or lick the food the first time it's offered.

You can also build on a preferred food to gently expand a diet to include similar choices. So if your son insists on, say, Honeynut Cheerios, try offering him a similar cereal such as Multigrain Cheerios. It will help to have your child's "buy-in" for this. So try making the new choice together at the supermarket when you're both calm and away from the dining-room table.

Finally, try to encourage flexibility around trying new foods. Away from mealtime, discuss how his favorite food can be his "Plan A" choice for mealtime, but that it may not always be available. So he'll need a "Plan B" that he agrees will be acceptable. (These types of strategies can be found in Unstuck and on Target: An Executive Function Curriculum to Improve Flexibility for Children with Autism Spectrum Disorders.)

Also see my previous blog on autism and food aversions, " Encouraging Picky Eaters with Autism to Try New Foods ".

I hope these insights and tips prove helpful. Best wishes to you and your family.

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What Is It about Autism and Food? | Autism Speaks

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"What is it about autism and food? It seems to provide our son with such comfort. But his narrow focus becomes an obsession that leads to meltdowns." This week's "Got Questions?" answer comes from psychologist Emily Kuschner, of The Children's Hospital of Philadelphia, a member of the Autism Speaks Autism Treatment Network .

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Chapter 33: Is it difficult for you to choose appropriate clothing?

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Chapter 33: Is it difficult for you to choose appropriate clothing?

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"Whether it’s hot or whether it’s cold, I always have a hard time choosing the right clothing, as well as putting extra layers on or peeling them off accordingly. Some people with autism keep wearing exactly the same type of clothes all through the year, in fact."

Higashida, Naoki. The Reason I Jump (p. 61)

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Today's "Got Questions?" answer is by psychologist Stephanie Weber, of the Kelly O'Leary Center for Autism Spectrum Disorders at Cincinnati Children's Hospital Medical Center. The center and hospital are part of the My grandson [who has autism] has to have his coat on when going outside even when it's hot, and he won't wear shorts. What can we do? Editor's note: The following information is not meant to diagnose or treat and should not take the place of personal consultation, as appropriate, with a qualified healthcare professional and/or behavioral therapist. Autism Speaks Autism Treatment Network (ATN).
Thanks for your question. Change is hard for everyone, but harder for some. Insistence on routine and resistance to change are particularly common among those who have autism.

Your grandson may feel that putting on his coat is an important step in his daily routine. In other words, not completing this step might cause anxiety because it goes against his need for consistency - despite the changing weather.

I hope that he is receiving behavioral intervention for his autism. His behavioral therapist is best suited to assess his challenges and strengths and use them to personalize a therapy program that addresses the issues behind his reluctance to transition to warm weather clothing. No doubt, these transition skills will help him more broadly in life.

Meanwhile, I can offer some research-based strategies for helping your grandson deal with this change in his daily routine.

In helping someone with autism make a difficult change, two things are important: Clear communication and reinforcement. It's also crucial to tailor the approach to match your grandson's developmental level.

Tailoring the approach to developmental level

In younger children and people more cognitively impaired, a basic behavioral strategy is to use a favorite toy, activity or other small and immediate reward to support his efforts. (You know what your grandson likes - within reason, of course.)

For instance, explain that he will receive the reward of, say, watching a Barney video with you, after helping you with an important task: Placing his heavier cold-weather clothing in a bin and saying "goodbye" to it until cooler weather returns in fall.

Praise him warmly and immediately provide the reward.
For more information on using visual supports, see "Visual Supports and Autism Spectrum Disorder," an Autism Speaks ATN/AIR-P tool kit. Follow the link for free download.

Consider putting the bin of clothing in an inaccessible place such as a locked closet or attic so he won't be tempted to pull the clothing items out again.

Many people, whether or not they have autism, simply don't like to hear the word, "No." So if your grandson starts asking for the cold-weather clothing, I suggest telling him that they are "not available," rather than telling him. "No coat" or "No long pants."

If your grandson responds better to visual than verbal cues - as is true of many people with autism - I encourage you to copy or make a visual support that looks something like this:

Next, it's important to offer him a choice of a few warm-weather clothing items. Here again, visual supports may work well to help him understand his options.
Winter is gone. Summertime is here. I need to put my coat and long pants away until fall.
I need to wear warm weather clothes like shorts and T-shirts.
When I wear my warm weather clothes, my family is proud of me!

In your grandson's case, a great visual support might be choice board, or "menu," of clothing options. It might be fun for the two of you to take pictures of his summer clothes and assemble them on the board. It might work well to have shirts on one side and pants on the other. Then each day, invite him to select a picture of the shirt and pair of pants he wants to wear.
Click here for more examples of autism-friendly teaching stories you can personalize (developed by Autism Speaks and the University of Washington).
Remember to warmly praise each small step in the right direction. Consider a small reward such as a sticker - or a token toward a larger reward - for each success such as trying on a pair of shorts. Depending on your grandson, you may need to approach the goal gradually - say, by briefly touching a pair of shorts one day, then touching the shorts for, say, 10 seconds another day and moving all the way up to putting the shorts on.

Another strategy backed by research is to create and read a personalized teaching story with your grandson. With simple language and drawings or photos, these stories can help people with autism understand expectations for different situations.

In your case, I suggest pictures of your grandson's summer and winter clothing items. Then, write short sentences (based on your grandson's level of understanding) that outline the expectations.

For example:

You can further personalize the story by including pictures of your grandson and/or describing him earning a favorite activity or treat by wearing his summer clothes.

If your grandson is older and/or more intellectually able, cognitive behavioral therapy (CBT) may work well to ease any anxiety he has around this change in his routine. Considerable research has gone into adapting CBT for children and adults who have autism, with positive results. Techniques include challenging negative thoughts with logic, role-playing and modeling courageous behavior, and gradual exposure to feared situations - in this instance, going outside without a coat.

Autism researcher and cognitive behavioral therapist Jeffrey Wood has written several helpful advice posts on applying CBT techniques to ease anxious situations in children and adults who have autism.
Got more questions for our experts? Send them to gotquestions@autismspeaks.org.
We apologize that we can't answer all your questions in this column.
The importance of consistency

Whatever your strategy, it's vitally important for you to be calm, firm and consistent in your response. Once you've made clear that the coat is not available, don't pull it out to stop misbehavior. Conversely, provide rewards promptly - for example right after he puts on his shorts or T-shirt.

Consider sensory issues

Sensory sensitivities might also be at play in addition to your grandson's desire for familiar daily rituals. We know that many people on the autism spectrum prefer relatively snug-fitting clothing that covers their arms and legs. The snug clothing may help provide a sense of where the body is in space - sometimes called the sense of proprioception. An occupational therapist experienced with autism and sensory issues can assess your son and, if appropriate, design an intervention to help.

Thank you again for your question. Please let us know how these strategies work for you and your grandson by emailing us again at gotquestions@autismspeaks.org.

Need personal guidance?

Members of the Autism Speaks Autism Response Team are trained to connect individuals and families with information and resources.
Call (888) 288-4762│En Español (888) 772-9050│ or email familyservices@autismspeaks.org

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Autism and resistance to the change from winter to summer clothes | Autism Speaks

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Today's "Got Questions?" answer is by psychologist Stephanie Weber, of the Kelly O'Leary Center for Autism Spectrum Disorders at Cincinnati Children's Hospital Medical Center. The center and hospital are part of the My grandson [who has autism] has to have his coat on when going outside even when it's hot, and he won't wear shorts.

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Chapter 34: Do you have a sense of time? 

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Chapter 34: Do you have a sense of time? 

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"Time is a continuous thing with no clear boundaries, which is why it’s so confusing for people with autism. Perhaps you’re puzzled about why time intervals and the speed of time are so hard for us to gauge, and why time seems such slippery stuff for people with autism."

Higashida, Naoki. The Reason I Jump (p. 63)

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One of my three sons has an autism spectrum disorder, and another has a diagnosis of attention deficit hyperactivity disorder. These two boys are so behaviorally similar, though, that we've often wondered where one diagnosis ends and another begins.

One area of overlap is their sense (or lack thereof) of time and timing. They both show delays in responding to spoken questions or requests. When their peers learned to tell time in elementary school, they were completely at sea, unable to instinctively comprehend the passage of time. Even now, in their adolescence, the question "What day is it?" is frequent, as is "What are we having for lunch?" within an hour of having had lunch.

These differences in time perception are probably familiar to many people with autism and their families. And studies are increasingly confirming what we can relate anecdotally. The most recent, published 30 July in Autism Research, found that people on the autism spectrum have an impaired sense of time .

The researchers asked 27 children with autism and 25 controls, all aged 9 to 17 years, to gauge how long a light bulb glowed. Sitting in front of two bulbs, each participant first saw one bulb light up for 4 to 20 seconds and then pressed a computer key to make the second bulb light up for the same amount of time.

Because attention deficit - a common feature in autism - may affect time perception , the researchers also asked parents to complete a questionnaire on their child's levels of inattention and hyperactivity. They also measured each participant's short-term, or working, memory, defined as the ability to recall very recent events, using a standard test for intelligence quotients.

They found that children who have a poor working memory are less able to consistently recreate time intervals, and this association is more pronounced in children with autism. However, attention deficit does not appear to affect performance on the task.

Their findings agree with those from several previous reports, including a 2010 study that found that people with autism are less accurate than controls at assessing the length of a tone .

This tendency may be significant beyond wondering what day it is, and may relate to the ability to distinguish day from night. Some research points to the relevance of clock genes, which regulate sleep, memory and innate timing, in autism. For example, mutations in two circadian genes, NPAS2 and PER1, have been linked to autism.

Consistent with this, children with autism often struggle with sleep. PER1 has also been linked to Alzheimer's disease, another condition characterized by disrupted short-term memory and time perception and severe sleep problems.

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For people with autism, time is slippery concept | Spectrum | Autism Research News

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One of my three sons has an autism spectrum disorder, and another has a diagnosis of attention deficit hyperactivity disorder. These two boys are so behaviorally similar, though, that we've often wondered where one diagnosis ends and another begins. One area of overlap is their sense (or lack thereof) of time and timing.

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Chapter 35: Why are your sleep patterns all messed up? 

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Chapter 35: Why are your sleep patterns all messed up? 

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"Quite a few people with autism find it hard to fall asleep at night. When I was little there were times when I couldn’t fall asleep either, even when it got really late."

Higashida, Naoki. The Reason I Jump (p. 66)

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Chapter 39: Why do you like being in water? 

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Chapter 39: Why do you like being in water? 

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"In the water it’s so quiet and I’m so free and happy there. Nobody hassles us in the water, and it’s as if we’ve got all the time in the world. Whether we stay in one place or whether we’re swimming about, when we’re in the water we can really be at one with the pulse of time."

Higashida, Naoki. The Reason I Jump (p. 71)

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It is a common belief in the ASD community that kids with ASD "love water." While this could be an overgeneralized claim, caregivers frequently share, blog, and post web comments related to water.

Anecdotes like "he repeatedly turns on the taps to watch water run but doesn't bother with water in a bowl," "pours water on himself and his sister," "he can spend hours in the tub and is often found playing with the hose," "loves making waterfalls and swimming pools," and "anything near water he heads right for it," are frequently published (asd-forum.org.uk, 2008).

Interest in water may be common among people with ASD, but what kind of water? Is it still water, flowing, dripping, or swimming?

What about taking baths and showers? Surveying personal comments provided by caregivers (bbc.uk.org), baths can have appeal as the water can be engaged or manipulated. Not necessarily just for hygiene, a bath can be an opportunity to view water moving and catching the light. Showers, however, can be entirely different.

Caregivers sometimes report opposition to showering as it may be too loud, and the beads of water can feel like "stingers" or "golf balls" on the skin (themighty.com, 2016). As far as addressing this opposition, there does not appear to be a plethora of empirical evidence specifically targeting shower/ bathing.

This adaptive behavior is commonly included for interventions with other hygiene-related activities, i.e., hand washing, tooth brushing, etc. (Veazey et al., 2016). This may not be surprising considering Pituch et al. (2011) surveyed parental treatment priorities, and hygiene was not listed in the top ten.

According to the DSM 5 (American Psychiatric Association, 2013), diagnostic criteria for ASD vary from deficits in social communication and interactions to restricted, repetitive patterns of behavior. Does the latter aforementioned description help explain possible predilections to water?

Included within the diagnosis under "restricted, repetitive patterns of behavior" are two qualifiers that are plausible: "highly restricted, fixated interests that are abnormal in focus or intensity" and "hyper or hypo-reactivity to sensory input or unusual interest in sensory aspects of the environment."

Can the movement of water and/or light reflection of it reinforce the "visual fascination with lights or movement," as identified as a behavioral characteristic in the diagnosis? Perhaps the need for sensory stimulation could lead people with ASD to engage in the fluidity (pun intended) of moving water.

Numerous studies have suggested the benefits of swimming for people with ASD, such as improved social skills (Mortimer et al., 2014; Pan, 2010), improved emotional responses (Caputo et al., 2018), physical fitness (Yilmaz et al., 2004), self-esteem (Napolitano, 2017), and motor abilities (Farnaz et al., 2015).

While an inherent interest in water coupled with the potential benefits of water exercise has an appeal, it is not without a caveat. Guan and Li (2017) concluded children with ASD were 160 times more likely to die from drowning than their neurotypical peers.

Couple a tendency to elope from supervised settings with an interest in water, an inability to safely navigate water could pose a significant threat. The last authors (Guan and Li, 2017) recommend swimming lessons as soon as the ASD diagnosis is made.

Other authors concur with the necessity of safety skills training regarding swimming (Alaniz et al, 2017; Lepore et al., 2007; Levy et al, 2017). Additional precautions are recommended for active supervision near bodies of water to prevent children with ASD from wandering.

While caregivers may freely share their children's water-play (not for hygiene) behaviors, not much is disseminated regarding sensory precautions, i.e., nose plugs, earplugs, sensory deprivation gear, etc. Additionally, caregivers have reported the texture of a bathing suit and bathing caps can be potential barriers to this activity (Duquette, 2016).

Similar to any typically developing child, those with sensitivities to their eyes, ears, and nose could take similar precautions, though tolerance wearing these sensory modalities will vary across people.

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What about people with ASD who are afraid of water? Is that common or as common as those with ASD having an interest with water? Phobias are not restricted to the typically developing population. Case in point, research suggests people with ASD exhibit more fears and phobias than people with other developmental disabilities or typically developing peers (Lydon et al., 2015).

This may not be surprising considering people with ASD may be more sensitive to environmental stimuli. Additionally, there appears to be a greater variety of stimuli that could occasion fear, with water being identified as a source of fear in some with ASD (Davis et al., 2007; Love et al., 1990; Rapp et al., 2005; Volkmar & Cohen, 1985). Having an interest in water cannot be overgeneralized to the entire population of people with ASD.

Previously mentioned research is suggestive of the benefits of swimming for those with ASD. Considering the literature also suggests the possibility of water being aversive, what are the options to address this aversion? Davis et al. (2007) combined cognitive behavioral therapy and behavioral analytic methods to decrease anxiety to water.

Love et al. (1990) involved the caregivers and had them model stepping towards the water source and vocalizing a lack of fear. Another intervention to address avoidance of water was reinforcing the person's entering various depths of water (Rapp et al., 2005). Currently, some research exists; unfortunately, there appears to be a paucity of empirically validated methods to address water phobia with people with ASD.

Why? Is it because fear of water does not appear to be a priority in the treatment of ASD? Perhaps a fear of water is not something actively discouraged among caregivers. In view that wandering away from supervision is the most reported activity prior to drowning incidents for those with ASD (Guan & Li, 2017), caregiver discouragement is plausible.

So what is to be done with the potential for water activities? Encourage? Discourage? Indulge? Do we allow the child to play with water in ways different than his/her typically developing peers? How long should the caregiver allow the child with ASD to play in the tub? When do we consider the child just having fun as opposed to engaging in self-stimulatory behavior? If he/she is under stimulated, does the water help? What should be done?

One area leaves little room for debate: safety. If there is a remote interest in water, swimming lessons are recommended along with active supervision when in or near water. Leisure water activities could also be used to encourage water for hygiene.

If the person with ASD has sensitivity issues related to showering, baths could be an option by allowing him/her to pour water over himself/herself for rinsing. If pouring the water is not an option, caregivers could allow him/her control over the pouring (how long to pour, when to start, the type of container holding the water, etc.). If pouring is too loud, earplugs are an option.

What if he/she engages in self-stimulatory behavior with water? An option could be to allow "free water time" in his/her schedule, being notified ahead of time with vocal and visual prompts. Additionally, provide prompts of time (vocal reminders, countdown timer) remaining for this activity to notify its conclusion and transition to another.

So, regarding the common proclivity for people with ASD to be attracted to water, can it be considered a "given?" I must defer and suggest that nothing is a given. Regardless of abilities and disabilities, an individual is unique and should be engaged as such.
References:
Alaniz M.L., Rosenberg, S.S., Beard, N.R., & Rosario E.R. (2017). The effectiveness of aquatic group therapy for improving water safety and social interactions in children with autism spectrum disorder: A pilot program. Journal of Autism and Developmental Disorders, 47, 12, 4006-4017.

American Psychiatric Association (2013). The Diagnostic and Statistical Manual of Mental Disorders, 5th ed. Arlington VA: American Psychiatric Association.asd-forum.org.uk. (2008, August 26). Water obsession [Blog post]. Retrieved from https://www.asd-forum.org.uk/forum/index.php?/topic/18764-water-obsession/

bbc.uk.org. (2012, July 18). Are people with autism drawn to water? Retrieved from http://www.bbc.co.uk/blogs/ouch/2012/07/are_people_with_autism_drawn_t.html Caputo, G., Ippolito, G., Mazzotta, M., Sentenza, L., Muzio, M.R., Salzano, S., & Conson, M. (2018).

Effectiveness of a Multisystem Aquatic Therapy for Children with Autism Spectrum Disorders. Journal of Autism and Developmental Disorders, 48, 6, 1945-1956. Davis, T. E., Kurtz, P. F., Gardner, A. W. & Carman, N. B. (2007). Cognitive-behavioral treatment for specific phobias with a child demonstrating severe problem behavior and developmental delays. Research in Developmental Disabilities, 28, 546 - 558.

Duquette, M.M., Carbonneau, H., Roult, R., & Crevier, L. (2016). Sport and physical activity: Facilitating interventions with young people living with autism spectrum disorder. Physical Activity Review, 4, 40-49.

Farnaz, T., Azar, A., & Sohayl, D. (2015). The effect of basic swimming skills training on gross motor skills in autistic children (7-11 years old). Development and Motor Learning (Harakat), 7, 2, 171-185.

Guan, J. & Li, G. (2017). Injury mortality in individuals with autism. American Journal of Public Health, 107, 5, 791-793.

Lepore, M., Gayle, G.W., & Stevens, S. (2007). Adapted Aquatics Programming, 2nd ed. Champaign, IL: Human Kinetics.

Levy, K.M., Ainsleigh, S.A., & Hunsinger-Harris, M.L. (2017). Let's go under! Teaching water safety skills using a behavioral treatment package. Education and Training in Autism and Developmental Disabilities, 52, 2, 186-193.

Love, S. R., Matson, J. L., & West, D. (1990). Mothers as effective therapists for autistic children's phobias. Journal of Applied Behavior Analysis, 23, 379-385.

Lydon, S., Healt, O., O'Callaghan, O., Mulhern, T., Holloway, J. (2015). A systematic review of the treatment of fears and phobias among children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 2, 141-154.

Mortimer, R., Privopoulos, M., & Kumar, S. (2014). The effectiveness of hydrotherapy in the treatment of social and behavioral aspects of children with autism spectrum disorders: a systematic review. Journal of Multidisciplinary Healthcare, 7, 93-104.

Napolitano, S. (2017). Swimming as an inclusion tool for autistic subjects. Journal of Physical Education and Sport, 5, 2339-2343.

Pan, C.Y. (2010). Effects of water exercise swimming program on aquatic skills and social behaviors in children with autism spectrum disorders. Autism, 14, 1, 9-28.

Pituch, K.A., Green, V.A., Didden, R., Lang, R., O'Reilly, M.F., Lancioni, G.E., & Sigafoos, J. (2011). Parent reported treatment priorities for children with autism spectrum disorders. Research in Autism Spectrum Disorders, 5, 135-143.

Rapp, J.T., Vollmer, T.R., Hovanetz, A.N. (2005). Evaluation and treatment of a swimming pool avoidance exhibited by an adolescent girl with autism. Behavior Therapy, 36, 101-105.

themighty.com. (2016, March 17). Why a shower is a big deal for my son with autism and sensory processing disorder. Retrieved from https://themighty.com/2016/03/why-a-shower-is-a-big-deal-for-my-son-with-autism-and-sensory-processing-disorder/

Veazey, S.E., Valentino, A.L., Low, A.I., McElroy, A.R., & LeBlanc, L.A. (2016). Teaching feminine hygiene skills to young females with autism spectrum disorder and intellectual disability. Behavior Analysis in Practice, 9, 2, 184-189.

Volkmar, F.R. & Cohen, D.J. (1985). The experience of infantile autism: A first-person account by Tony W. Journal of Autism and Developmental Disorders, 15, 1, 47-54.

Yilmaz, I., Yanardag, B., Birkan, B., & Bumin, G. (2004). Effects of swimming training on physical fitness and water orientation in autism. Pediatrics International, 46, 5,624-626, 2004.

This article was featured in Issue 104 -Transition Strategies For Kids With Autism

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A Look at the Connection Between Autism and Water - Autism Parenting Magazine

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It is a common belief in the ASD community that kids with ASD "love water." While this could be an overgeneralized claim, caregivers frequently share, blog, and post web comments related to water. Anecdotes like "he repeatedly turns on the taps to watch water run but doesn't bother with water in a bowl," "pours water [...]

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Chapter 41: What kind of TV programs do you enjoy?

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Chapter 41: What kind of TV programs do you enjoy?

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"People with autism get quite a kick out of repetition. If I was asked how come, my reply would be this: “When you’re in a strange new place, aren’t you relieved too if you run into a friendly, familiar face?”

Higashida, Naoki. The Reason I Jump (p. 75)

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This story is part of a group of stories called

First-person essays and interviews with unique perspectives on complicated issues.

When I was finally diagnosed with autism spectrum disorder at 27, the thing that helped me the most wasn't therapy or autism organizations. It wasn't even my introduction to the neurodiversity movement and the idea that I didn't have to be "cured" to have a worthwhile life. It was watching television.

One of my favorite shows was the cult favorite sitcom Community. The character Abed Nadir, though never officially labeled autistic on the show, is heavily coded as autistic. He was intensely interested in pop culture, and his use of sarcasm was a work in progress. He liked people but didn't always know how to connect with them.

He was both a rare chance to see someone like me onscreen and a cultural touchstone that I could use to help explain parts of myself to new people without feeling like I had to teach Autism 101 every time I opened my mouth.

Abed was to me what Sesame Street's writers are hoping the new autistic Muppet Julia will be to today's children on the spectrum. Julia debuts April 10 on HBO.

When I wanted to describe anything from my off-kilter understanding of pranks to my interest in pop culture to my desires and imperfect efforts to relate to other people, I could say I was a little like Abed. Some people responded with references to issues that he'd experienced on the show. Some hadn't heard of Community, which at least gave me the chance to talk about a great show instead of giving them a straightforward list of my symptoms and needs. At the very least, it got a few people to stop joking about whether I could count cards. That one little reference inspired a lot of understanding that I hadn't really experienced before Community.

Julia's presence on Sesame Street is a bold step forward for autistic awareness and inclusion. And based on my own experiences on the spectrum and in the world, I think her existence has the potential to be even more powerful than that. Thanks to Julia, autistic kids now have a chance to find their Abed decades before I found mine. She's not just someone who might look and move a little like them. She has the ability to teach a whole new generation of autistic kids that they belong.

Learning social skills through television

In the show, Abed learned some of his social skills from watching movies and television shows. This was something I related to a lot. My interactions with people in real life didn't always make perfect sense to me, so I turned to their scripted counterparts to help me figure out what I'd been missing and how to join in. I've since learned that using television shows and movies as a way to learn social skills is somewhat common for people on the autism spectrum.

To a certain extent, this is true of all people. Generations of kids have grown up on the kind and increasingly inclusive lessons of Sesame Street, for example.

As Autumn Singer-Califano observes in the 2008 Journal of Educational Psychology article "The Use of Technology in Enhancing Social Skills," kids and teens can use their television watching as a way to mentally "rehearse appropriate interactions with peers and selectively apply them as appropriate situations arise." Television can also be used as a kind of tool to help children and adolescents better understand themselves and others.

When you have a disability that affects the way you can read and respond to other people, those benefits become even more important. Some studies have started to look into ways of harnessing the potential of television to help young people on the spectrum improve their social skills, but, as with most things autism-related, people who are actually autistic are way ahead of the experts on this topic. Many of us have been using TV shows to help us fill in the gaps in our social development since we first realized we weren't like other kids, and those lessons often continue well into adulthood.

Autistic bronies and pegasisters of all ages have embraced My Little Pony: Friendship Is Magic both for its charming plots and for its explicit lessons about nurturing personal relations.

"As a person with Asperger syndrome, I learned more about theory of mind, friendships, and social interactions from this season than I had in the previous 31 years of life," a brony named Luke Allen told Wired in 2011.

Dori Zener, an autism therapist I interviewed for a story on media and autism representation last year, told me that a number of her young female clients were big science fiction fans, because social conventions tend to be better spelled out on shows where outsiders or actual alien species are involved.

Friends was also a popular choice with the girls she saw. One client went so far as to watch every episode of Seinfeld in an effort to teach herself how to understand sarcasm and the nuances of acerbic humor that she struggled to pick up in real life.

As for me, I have several shows that I've turned to over the years. I continued to watch Sesame Street and Canada's Polka D ot Door long after my peers had moved on - and long after the programs' math and language lessons had started to bore me - because I was still getting something out of the way the characters treated each other. I also went through a Friends phase in my early teens - I can't speak for other girls, but I think the goofy, larger-than-life plots helped me parse group dynamics - before switching to News R adio and fantasizing about finding my own group of misfits instead.

When I was a teenager, the overly wordy cast of Dawson's Creek became the perfect bridge between my overly wordy self and the "normal" teenagers I was trying so hard to figure out. The fact that the characters could articulate their feelings in great detail and at great length gave me a better glimpse into the teenage mind than anything in my day-to-day life did.

I even turned to pro wrestling for a while because its over-the-top feuds, betrayals, and alliances are a surprisingly effective way to navigate the darker sides of human interaction and subterfuge when you don't have any natural ability to intuit people's intentions.

This all helped me integrate into a world that's not built for people like me. I could study interactions, take time to process them, and start to practice my own variations before attempting them in real life, where the potential for failure - and the cost of failure - is so much greater. Studying and mimicking characters has also helped me learn to modulate the tone of my voice, make my conversation more reciprocal, and project some things with my body language.

Still, autistic characters are rare in television or films

There's one glaring omission from most shows that makes this kind of makeshift study incomplete at best and harmful at worst: autistic characters. Or at least autistic characters who are more than an object of other character's pain, inspiration, and/or teachable moments. When you're learning social skills from examples that don't include anyone who is like you, there's a good chance you'll come to the conclusion that there's no genuine place for you in situations like that.

At least, that's what I got from them. I became good at mimicking and accommodating allistic - non-autistic - people, but I didn't know how to stand up for my own needs and desires as a person. I'm not entirely sure I even knew I could. I shaped myself into such a cypher that I actually made a few friends in my 20s who knew almost nothing about me after years of hanging out together.

So when I saw in Community Troy, the popular high school football hero, finding a kindred spirit in Abed and not just delighting in his differences but actually sharing a few of them, it was a revelation for me. For the first time in my life, I was seeing an outside example of how an autistic person might be able to form a mutually beneficial friendship with another person without having to fundamentally change or hide who they were.

It's one reason I'm excited about Julia - but it's an imperfect representation

In the wake of the announcement that Julia, an autistic Muppet, would make her television debut on Sesame Street this month, a lot of allistic people have been discussing how her presence on the show can raise awareness and help teach allistic children to be more understanding and inclusive.

I've written about how Julia, as imperfect as her representation of autism is, can potentially help save a new generation of kids from the kind of bullying I suffered in my own undiagnosed and misunderstood youth. But what few of us have mentioned is that this Muppet doesn't just have the potential to teach allistic kids how to treat autistic kids better. She can also teach kids like me how to treat themselves better.

Take these two clips: one where Abby notices that Julia is humming "Sunny Days" to herself and initiates a sing-along, and one where Elmo sings the praises of playing side by side when Julia isn't immediately interested in his suggestion of games.

When children who aren't on the spectrum watch these clips, they're learning how to treat their autistic peers like human beings with their own wants and needs.

When kids on the spectrum see those same segments, they are learning that it's perfectly valid to have those needs and that friendship can and should be a mutual exchange. It doesn't have to be an interaction where you have to pretend to be "normal" just to earn a modicum of tolerance.

Sesame Street 's use of Julia so far isn't perfect. I wish the other Muppets and the adults around them didn't spend so much time explaining Julia or talking over her. That's a habit that allistics really shouldn't pick up and autistics should not be taught to passively accept. But this is still an important step forward for a population that often has a unique relationship with the things we watch.

I'm a firm believer in the power of media representation for everyone. Seeing a part of yourself reflected back in the stories you love is an incredible experience, one that can make you feel like you matter, like you have a place in this world even - or especially - when you're being yourself. If you're a person who also relies on those stories to teach you about the world, meaningful representation also provides you with something else: a template to help you make all of those life-changing things a part of your reality.
Sarah Kurchak is a writer, autistic advocate, and retired professional pillow fighter from Toronto. Her work has appeared in outlets including t he Guardian, t he Establishment, Fusion, and Vice. F ind her on Twitter@fodderfigure.
First Person is Vox's home for compelling, provocative narrative essays. Do you have a story to share? Read our submission guidelines, and pitch us at firstperson@vox.com.

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"I have autism. Watching television helped me more than therapy."

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First-person essays and interviews with unique perspectives on complicated issues. When I was finally diagnosed with autism spectrum disorder at 27, the thing that helped me the most wasn't therapy or autism organizations. It wasn't even my introduction to the neurodiversity movement and the idea that I didn't have to be "cured" to have a worthwhile life.

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Chapter 44: What do you think about running races? 

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Chapter 44: What do you think about running races? 

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"I don’t hate races, but the instant I’m conscious of the need to run fast, I find that I can’t. If I’m just running for fun with my friends, I find I can run as long as I want to—it’s as if I’m making friends with the wind."

Higashida, Naoki. The Reason I Jump (p. 83)

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By Dr. Sean Healy
Guest post by Sean Healy, author of a new meta-analysis of research on the benefits of exercise for youth who have autism. Dr. Healy is an assistant professor in the Department of Behavioral Health and Nutrition, at the University of Delaware. He conducts research on physical activity adapted to the needs of special groups.

Thanks to a growing number of studies involving youth with autism - we can confidently say that physical activity provides them with a wide range of benefits.

The phrase "exercise is medicine" is a common refrain among fitness experts and health practitioners. A wealth of research gives credence to this truism. And now - thanks to a growing number of studies involving youth with autism - we can confidently say that physical activity provides them with a wide range of benefits.

Benefits of physical activity in autistic youth

Social skills: Our meta-analysis showed that youth who participated in physical activity programs designed for individuals with autism showed significant gains in their social and communication skills. The activities included horseback riding, various types of group play, running/jogging programs and exergaming (e.g. Nintendo Wii and other electronic games that involve physical activity).
Researchers have considered why physical activity improves social skills. When designed appropriately, physical activity programs can provide a fun, safe setting for interacting with other children. In other words, they can offer excellent opportunities for practicing social skills. In addition, activities involving animals (e.g. horseback riding) provide children with a fun way to interact nonverbally as well as verbally.

Fitness: It's very encouraging that our analysis confirmed that youth on the spectrum significantly improved their muscular strength and endurance by participating in programs such as exergaming, aquatic exercise and horseback riding. This is particularly important as we knew from previous studies that people with autism tend to have poorer muscular strength and endurance than is typical for their age. Strength and endurance are important for not only physical health, but also for taking advantage of social opportunities that involve physical activity including recreational sports and non-structured games.

I recently published the results of my team's meta-analysis of 29 studies looking at the benefits of exercise among more than a thousand young people on the autism spectrum. In a meta-analysis, we combine the findings of multiple studies to gain a deeper and more reliable picture of a potential effect of an intervention.

Overall, we found that physical activity programs for youth with autism produced moderate to large benefits in a variety of important areas. These include improving motor skills, skill-related fitness, social functioning and muscular strength and endurance.

Skill-related fitness: Many individuals with autism have lower fitness skills compared to other people. These skills include balance, body coordination, visual-motor control and other mobility skills. Here again, we were encouraged to find that many types of physical activities improve skill-related fitness for youth with autism. These activities included computer-based exergaming, jumping on a trampoline (with supervision and safety barriers), motor skill training (e.g. table tennis) and horseback riding.

Motor skills: Many kinds of physical activities - and the social opportunities they afford - require what we call "fundamental motor skills." These basic skills include running, throwing, catching and so on. Again, our analysis showed that exercise programs significantly improved these skills among youth with autism.

Strategies for encouraging physical activity

Research and our clinical experience have helped us understand and address many autism-related barriers to enjoyable participation in physical activity.

It's important to consider aversions. Recently I encouraged a boy with autism to play alongside his peers during recess. He replied, "I don't think you could design a worse place for me to be!" I got it. I was asking him to enter a setting that was social, active, loud and unpredictable - all qualities he disliked.

Several issues make physical activity less appealing for many people with autism. These include poor social and motor skills, a preference for screen-based activities, and a lack of exercise partners and autism-friendly opportunities for physical activity in our communities. The good news: We have strategies to help.

1. Start small

The Centers for Disease Control and Prevention (CDC) recommends that children get at least an hour of physical activity daily. That's good to know, but I suggest starting with a more modest goal and building from there.
Here are some ways to add physical activity into a daily routine:

Walking to school (or work) - or at least some of the way.

Walking the dog (if you have one).

Turn TV advertisements into exercise breaks. I recommend a few minutes of a rigorous activity such as jumping jacks. Join your child in the fun.

Make a family trip to the playground a regular, after-dinner activity. If you can walk there, even better.

We've found that shorter periods of physical activity, spaced throughout the day, tend to be easier to maintain. Remember: The goal is to make physical activity a regular and enjoyable part of daily life. So, be patient and think long term.

I recommend gradually expanding the amount of time spent in these and other activities - with the aim of ultimately achieving the recommended daily hour of physical activity.
You can make this skill-building enjoyable by playing games that encourage your child to:
2. Build motor skills

Keep in mind that your child will need to build some fundamental motor skills to successfully participate in physical activities and sports.

Move in different ways (e.g. run, jump, hop, and skip)

Play with different types of equipment such as balls, bats and racquets (e.g. throw, catch, kick and strike).

Practicing these skills at home can foster your child's success in physical education class, while increasing the likelihood that he or she will enjoy other socially engaging physical activities such as playground games and recreational sports.
Ideally, include one or more activities that encourage:

Fitness. An activity that involves moderate to vigorous activity - activity that gets a person breathing heavily.

Social interaction. An activity that involves one or more other people, such as tennis or catch.

Independence. An activity that can be done alone, such as a home fitness or yoga routine - perhaps with the help of a video.

3. Sample different types of physical activity

Our analysis identified a wide range of activities that can deliver benefits. From table-tennis to swimming, from riding bikes to riding horses, there's an abundance of physical activities that you or your child can try. I suggest sampling from the menu.

4. Be a role model and enlist friends and family

As a parent, you are the most important role model for your child. I encourage you to model an active lifestyle for your child. Show them the enjoyment and value you gain from being active.

Next, consider the many people who interact with your child on a daily or weekly basisand how might you enlist them to encourage your child's physical activity.

Teachers, especially physical education teachers, can be a great influence. Share your aspirations and strategies for your child. If your child has an Individualized Education Plan (IEP), be sure to include physical education goals in your IEP discussions. If possible, invite the PE teacher to attend the IEP meeting.

Also consider contacting the people who run recreational sports programs in your community. Some may worry that they lack the skills to engage and include someone with autism in their programs. You may be able to give them the confidence they need by sharing your strategies for communicating, motivating, and instructing your child.

Someone who understands. Ideally, we want people with autism - especially children and teens - to have access to physical activity programs led by facilitators who understand how to communicate and motivate participants in autism-friendly ways. This doesn't have to be a professional in the field of autism. It can even be a "peer tutor" - another child who understands how to communicate with your child and can provide some one-on-one support.

Routine. Most of us need routine, and this appears to be especially true for many people on the spectrum. I suggest building a regular and predictable structure into the physical activity program. Create a visual schedule to help reinforce the routine.

Get visual. Many people with autism are visual learners. Visual supports such as task cards, physical demonstrations and video modelling often prove very helpful.

5. Make sure the physical activities autism-friendly

Here are three practical strategies commonly used in activity programs designed for youth who have autism:

Looking forward

We would like to see more research on the benefits of exercise for people on the autism spectrum and on the type and duration of activity that provides the greatest benefits. We also want to improve how we tailor and personalize physical activity programs to each participant needs and goals.

Most importantly, perhaps, we need to understand how to promote lifetime physical activity for people who have autism.

Meanwhile, we hope that our encouraging findings will inspire fitness practitioners, physical-education teachers and parents to engage children, teens and adults with autism in a wide range of activities. The benefits appear to be tremendous.

Related resources

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Autism and exercise: Special benefits | Autism Speaks

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Participating in physical activity has social benefits and produces lasting skills for people with autism. Dr. Healy shares the benefits of autism and exercise.

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Chapter 46: Do you enjoy your free time?

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Chapter 46: Do you enjoy your free time?

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"So what do you do in your free time? Because for people with autism, free time is in fact un-free time.

Higashida, Naoki. The Reason I Jump (p. 86)

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Leisure activities are an important part of life for everyone. Engaging in activities that are fun, enjoyable and interesting increases a person's well-being, happiness and satisfaction in life. Leisure activities can be done alone or in a group, at home or out in the community. We learn activities by watching others, taking lessons, joining clubs, reading instructions, or simply by trying.

For people with ASD, developing leisure interests and skills can be more challenging because skills are often not learned through informal observation of others or through imitation. Their interests are developed in their own way. How to use materials may not be understood and the materials may primarily used for their sensory qualities. Skills learned through one activity may not be generalized to another.

Why is developing leisure skills important?

Challenging behaviors are often reduced when a person engages in personally satisfying leisure activities. The ability to entertain oneself can reduce stress for the individual both at home and in the community.

There are also social benefits too. Leisure skills and interests can connect individuals who share the same passion. An activity brings a group of people together who share an interest and like to talk about it. My son, Marc, loves drumming so he regularly attends drum circles. He connects with others who enjoy drumming and they all play music together.

Exposure to a wide variety of activities and experiences broadens interests. Interests will also change over time so it's important to keep expanding experiences for growth and development.

Qualities That Make Leisure Materials and Activities More Successful

While everyone has personal preferences, the following specific qualities can make activities more meaningful and successful.
Understandable
Understanding an activity, the purpose of materials and what to do with them can sometimes be difficult. Some ideas to make things more understandable are:

1. Clear, static rules

2. Well defined beginning and end

3. Predictable or repetitive quality

4. Clear visual representation of what to do

5. Minimal verbal instruction

6. Structured activities
Reactive
Reactive materials provide reinforcement through sensory feedback. This means when you do an action, something happens and it looks different. Examples are lights, sounds, movement and tactile sensation. Electronic and computer games provide this kind of feedback, although it can be a struggle to limit time on tech devices. Music can add interest as well.
Comfortable
Qualities that can increase comfort level are:

1. Challenging without being over-stimulating

2. Suitable for the person's ability level

3. Limited demands for complex social interaction

4. Opportunity for a sense of control or mastery
Active
Young children need activities that use gross motor skills such as climbing, running and jumping. Rhythmic activities are also good choices such as swinging or swimming.

No matter what age an individual is, they need physical activity which helps reduce stress, build muscle, and increase flexibility and balance. Regular exercise can also contribute to a better night's sleep.
Visual-Spatial
Repetitive manipulation of objects, putting things in order, or fitting objects into spaces can be very motivating. There are lots of toys and games that provide these qualities such as puzzles.

How Can We Find Out What A Person Likes to Do?

In the book, Developing Leisure Time Skills for Persons with Autism, the authors recommend creating a Leisure Lifestyle Profile. The profile information is gathered through a parent/caregiver interview, an interview with the individual, direct observation assessment, followed by an assessment of the leisure and sensory preferences of the individual.

It's also important to assess what family and friends like to do as they often provide the expanded opportunities for activities. In our family, my son Marc loves audio tours so we visit historical sites and museums that provide audio guides. Marc will spend hours looking at paintings if he can press a button and listen to the stories about them. He does not have the same level of interest without the audio guide.

Some families like sports, concerts, nature walks, cooking, travelling, historical sites, gyms - the list is endless. By doing activities that the family likes to do, there will be more opportunities for the person with ASD for practice, engagement, and skill building.

Expanding Interests

I've written on this topic before and it's an important one. As a person ages and matures, their interests will change. Boredom can become a problem over time. A person can also get "stuck" in an activity and way of doing things.

Greater independence is achieved through being able to do activities across a variety of environments. My daughter Julia loves cooking, particularly baking. She has an at-home baking program and also attends a cooking class once a week. Our next goal is to get her volunteering at an organization that makes meals for mothers in need. This will give Julia's cooking a broader, community based purpose and connect her to new people. She also volunteers once a week at a Farmer's Market to get exposure to raw ingredients and homemade products.

Leisure activities connect us to our family and community. They develop skills, increase independence, and reduce stress. Greater life satisfaction fosters happiness and well-being, and when a person is happy they are generally more flexible and adaptable - both important life skills.

References
Developing Leisure Time Skills for Persons with Autism
Further Reading
Come and Play: Sensory-Integration Strategies for Children with Play Challenges
Getting into the Game: Sports Programs for Kids with Autism

Steps to Independence - Teaching Everyday Skills to Children with Special Needs
The Whole Spectrum of Social, Motor and Sensory Games: Using Every Child's Natural Love of Play to Enhance Key Skills and Promote Inclusion

About the author:
Maureen Bennie

Maureen Bennie created the Autism Awareness Centre in 2003 to address what she saw as a gap in support and advocacy for those struggling with autism and autism spectrum disorders. For Maureen, education brings positive change to the lives of those affected by autism and autism spectrum disorders.

Click to Read Maureen's Full Biography

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Developing Leisure Activities for Individuals with ASD - Autism Awareness

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For people with ASD, developing leisure interests and skills can be more challenging because skills are often not learned through informal observation of others or through imitation. Their interests are developed in their own way. How to use materials may not be understood and the materials may primarily used for their sensory qualities.

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Chapter 50: Why do you wander off from home? 

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Chapter 50: Why do you wander off from home? 

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"Once, when I was a little kid at kindergarten, I wandered off from home and had to be picked up by the police. Back then, in fact, I used to leave home quite regularly and, as I look back from this distance, I can think of several reasons why I did it. It wasn’t because I wanted to go out for a specific purpose, like wanting fresh air."

Higashida, Naoki. The Reason I Jump (p. 95)

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A new study confirms what many parents know well: Wandering by children with autism is common, dangerous and puts tremendous stress on families.

Using parent surveys, the researchers found that nearly half of children with autism spectrum disorder (ASD) attempt to wander or bolt from a safe, supervised place. More than half of these wandering children go missing - often into dangerous situations.

Importantly, the researchers found evidence that autism-related wandering does not stem from inattentive parenting. It also found that half of all parents had received no help or guidance on how to deal with the problem.

The study appears online today in the journal Pediatrics. Autism Speaks funded the research through its support of the Interactive Autism Network (IAN), an online project bringing together families affected by autism.

For the study, researchers sent questionnaires to IAN families, asking them to describe wandering after age 4 in children with autism and their unaffected siblings. Questions included whether a child had ever wandered or gone Frequency of wandering for children with ASD and siblings without ASD.missing and what promoted the disappearance. Parents also described the level of stress that wandering places on their family. In all, the survey captured information on 1,218 children affected by ASD and 1,076 normally developing siblings.

Nearly half (49 percent) of parents reported that a child with ASD had attempted to wander or run away at least once after age 4. Over half of these wandering children (53 percent) went missing long enough to cause worry. In addition, 65 percent of these incidents involved a close call with traffic. Nearly a quarter (24 percent) involved a close call with drowning.

A clear distinction emerged in families who also had typically developing children. Between ages 4 and 7, only 11 percent of unaffected siblings wandered, versus 46 percent of those with ASD. From age 8 through 11, just 1 percent of unaffected siblings wandered, compared with 27 percent of those with ASD.

"It's important to see that the high frequency of wandering in affected children contrasts to relatively little wandering in their unaffected siblings," says Autism Speaks Assistant Director of Public Health Research Amy Daniels, Ph.D.

This clearly communicates that wandering has little to do with parenting style and more to do with the nature of a child's autism.

Dr. Daniels co-authored the study, which she helped conduct before coming to Autism Speaks this year.

The study also provided a snapshot of the where, when and why of wandering among children with autism. Overall, wandering increased with autism severity. Most commonly, children wandered from their own home or one they were visiting. They also wandered from stores and schools.

When asked why their child with autism wandered, just over half of parents indicated that their child "simply enjoys running and/or exploring." Other common reasons included heading to a favorite place, escaping an anxious situation, escaping uncomfortable sensory stimuli or pursuing a special interest (each reported by roughly a third of parents).

The survey also confirmed that wandering creates great stress for families. Over half of parents (56 percent) indicated it was their child's most stressful behavior. Nearly half (43 percent) reported that it interfered with their ability to sleep at night. Sixty-two percent reported that it prevented them from attending or enjoying activities away from home.

Despite this high toll, half of parents said they'd received no guidance whatsoever on preventing or addressing the problem.

"This study underscores the need to develop ways to protect children who are unexpectedly without supervision or in an unsafe space, to help locate children when they wander and to prevent wandering from ever happening," says Dr. Daniels. "Families can develop safety plans for their children and work with teachers, police and other members of the community to educate them about autism and their children's risk of wandering. "

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Study finds autism wandering is common | Autism Speaks

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A new study confirms what many parents know well: Wandering by children with autism is common, dangerous and puts tremendous stress on families. Using parent surveys, the researchers found that nearly half of children with autism spectrum disorder (ASD) attempt to wander or bolt from a safe, supervised place.

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Chapter 51: Why do you repeat certain actions again and again?

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Chapter 51: Why do you repeat certain actions again and again?

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"But the repetition doesn’t come from our own free will. It’s more like our brains keep sending out the same order, time and time again. Then, while we’re repeating the action, we get to feel really good and incredibly comforted."

Higashida, Naoki. The Reason I Jump (p. 97). Random House Publishing Group. Kindle Edition.

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Repetitive, purposeless behaviors are a common symptom of autism.﻿﻿ In fact, many parents worry about autism when they see their child repetitively lining up toys, spinning objects, or opening and closing drawers or doors.

Repetitive behaviors can also involve saying, thinking about, or asking about the same thing over and over again.

In rare cases, repetitive behaviors can actually be dangerous; more often, though, they're a tool for self-calming.﻿﻿ They can become a problem when they get in the way of ordinary activities or make it tough to get through school or work.

"Stereotyped" Behaviors and Autism

Repetitive, apparently purposeless behaviors and obsessive, highly selective, and rigid interests are described as symptoms of autism in the DSM-5 (the official diagnostic manual).﻿﻿

Autism experts sometimes call these behaviors "stereotypy" or "perseveration." Different types of stereotypy and perseveration are present in other neurological conditions, as well.

According to the diagnostic criteria, being a "creature of habit" (preferring to follow a set schedule, for example) isn't enough to suggest autism; rather, the behaviors must be "abnormal in intensity or focus," and changes to those behaviors must cause "extreme distress."

According to the DSM, "Restricted, repetitive patterns of behavior, interests, or activities, as manifested by at least two of the following, currently or by history:

Stereotyped or repetitive motor movements, use of objects, or speech. Examples include simple motor stereotypes, lining up toys, flipping objects, echolalia, idiosyncratic phrases.

Insistence on sameness, inflexible adherence to routines, or ritualized patterns of verbal or nonverbal behavior. Examples include extreme distress at small changes, difficulty with transitions, rigid thinking patterns, greeting rituals, need for the same route or food every day.

Highly restricted, fixated interests that are abnormal in intensity or focus. Examples include strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests.

What Stereotyped Behaviors Look Like

Repetitive behaviors in autism can vary radically from person to person. For some, it involves saying or talking about the same things over and over again.

This can include things like listing all of Marvel's Avengers and their powers, reciting scripts from TV, or asking the same question many times in a row).

For others, it involves physical actions such as repetitive rocking, flicking, or pacing. In more severe autism, stereotyped behaviors can be violent, like head-banging.

Some people on the autism spectrum engage in repetitive behaviors constantly, while others only occasionally perseverate when they're stressed, anxious, or upset.﻿﻿

Many people with autism feel very anxious when asked to change their routine or schedule. While changes can be annoying to someone who is not autistic, autistic reactions to change can be extreme.

Sometimes, perseverative or stereotyped behaviors are obvious because they're so marked or unusual. Rocking back and forth for long periods, repetitively opening and closing doors, or reciting lines over and over are clearly unusual behaviors.

Often, however, autistic perseveration may not be obvious to the casual observer.

A person with autism may, for example, ask "Do you like Marvel movies?" If you say "yes," they may run through the same speech about Iron Man that they've been through ten times before, in exactly the same words, with exactly the same tone and gestures.

As a parent or close friend, you might know the speech backward and forward, but as a new friend, you may not know they've said it before.

Are Repetitive Behaviors a Problem?

These types of behaviors aren't unique to people with autism. Most people engage in some such behaviors. Common forms of perseveration include:

Nail biting

Pacing

Pencil or toe-tapping

Compulsive cleaning

A "need" to watch the same TV shows or sporting events without fail

For some people with autism, the problem of perseveration is really no problem at all, since it only arises at the same times as it would for other people-usually under stress-and the behaviors are fairly unobtrusive.

Perseveration can even be a plus for people with autism, since it may relate to a passionate interest that can lead to friendships or even careers. Someone with perseverative interest in computer games, for example, can join gaming clubs and find others with a similar passion.

For many people with autism, though, perseveration or repetitive behavior is not only disturbing to others but it's also a major roadblock to communication and engagement in the world.﻿﻿

A person who compulsively flicks his hands to the exclusion of anything else is clearly unable to attend to the world around them or take part in real-world activities.

And while there is nothing intrinsically wrong with talking about the same subject in the same way over and over again, such behavior can cause a variety of social and practical problems.

Causes and Treatments

No one really knows what causes perseveration in people with autism, though there are a variety of theories. The theory you espouse may cause you to select a particular treatment (or no treatment at all).

Of course, if a behavior is dangerous or risky, it must be changed. Some treatments have been more fully researched than others, but all have had some success with some individuals and less success with others.

If you believe perseveration is a behavioral issue, you're likely to use behavioral techniques (rewards and, in some cases, consequences) to "extinguish" the behavior.

If you believe repetitive behaviors are a self-calming technique used to block out too much sensory input, you're likely to use sensory integration techniques to help the person self-calm and regain a sense of control.

If you believe perseveration is a manifestation of real interests on the part of the person with autism, you are likely to use therapeutic techniques such as Floortime or SonRise to connect with them and help them turn perseverative actions into meaningful activities.

If you believe the perseverative behavior is caused by anxiety or a chemical or neurological issue, you are likely to attempt to control the behaviors through the use of medications.﻿﻿

A Word From Verywell

As a parent, you may be embarrassed or put off by your child's repetitive behaviors. Before taking action to "extinguish" them, however, it's important to understand the purpose they serve.

If they're helping your child stay calm, manage sensory challenges, or otherwise handle the demands of daily living, you'll need to support them as they modify or expand upon the routines.

That may mean finding a therapist to work with your child, or modifying your child's environment to make it less challenging.

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Recognizing Repetitive Behaviors in Autism and How to Manage Them

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Repetitive, purposeless behaviors are a common symptom of autism.﻿﻿ In fact, many parents worry about autism when they see their child repetitively lining up toys, spinning objects, or opening and closing drawers or doors. Repetitive behaviors can also involve saying, thinking about, or asking about the same thing over and over again.

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Chapter 54: Why do you need cues and prompts?  

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Chapter 54: Why do you need cues and prompts?  

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"People with autism are sometimes unable to move on to their next action without a verbal prompt. For example, even after we ask for a glass of juice and are given it, we won’t actually start drinking until someone’s said, “Enjoy” or “Go ahead and drink, then.” Or even after the person with autism has announced, “Right, I’ll hang the laundry now,” he won’t get started until someone has said back, “Okay, that’s great.”

Higashida, Naoki. The Reason I Jump (p. 104)

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How to Use Prompts Effectively and Efficiently - The Autism Helper

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Resources, tips, and materials to help you, help children with autism

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"People with autism may look happier with pictures and diagrams of where we’re supposed to be and when, but in fact we end up being restricted by them. They make us feel like robots, with each and every action preprogrammed. What I’d suggest is that instead of showing us visual schedules, you talk through the day’s plan with us, verbally and beforehand. Visual schedules create such a strong impression on us that if a change occurs, we get flustered and panicky."

Higashida, Naoki. The Reason I Jump (p. 107)

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Visual supports can help to:

provide structure and routine

encourage independence

build confidence

improve understanding

avoid frustration and anxiety

provide opportunities to interact with others.

They can make communication physical and consistent, rather than fleeting and inconsistent like spoken words can be.

Types of visual support

A wide range of items can be used as visual supports. For example:

These can be real objects, printed images, or on a smartphone, tablet or computer.

Uses of visual supports

Visual supports can be used in a range of ways, for example:

as a single message, eg the person takes a yellow card from their pocket when they need to go to the toilet, or a puts purple card on the board when they're feeling stressed

in combination to create a daily timetable, schedule, sequence or reward chart

to make a choice, eg the person can put the trampolining symbol in the 'afternoon' area of the board

to illustrate a social story or comic strip conversation.

Examples of visual supports

Make visual supports  portable, durable, easy to find, personalised and consistent.

Portable

Make the visual supports portable by:

using a visual supports app on the person's tablet

storing photos and pictures on the person's smartphone

putting symbols, pictures and schedules in a folder for the person to carry with them.

Durable

Laminate printed visual supports

Back up any app, photos and pictures you use on a smartphone, tablet or computer.

Easy to find

Ensure that visual supports are easy to find, for example by:

placing them in prominent places at eye level

putting them on an actual object

putting a single symbol in the person's pocket

distributing them throughout particular environments, eg objects and areas in the classroom and at home could be labelled

putting a shortcut to them from a tablet home screen

attaching symbols to boards so that people know where to go to look at them - you could also use Velcro strips to attach symbols to a board, meaning schedules can be easily altered, eg activities removed once completed.

Personalised

Visual supports are very personal and what works for one person may not work for another. Use the person's special interest, eg make a visual timetable in the shape of a rocket.

Remember that some autistic people have difficulties generalising, eg they may not realise that a Hula Hoop packet symbolises all crisps.

It can sometimes be helpful to use more than one type of visual support, but always introduce visual supports gradually. Start with one symbol and then build up a collection.

Consistent

If using pictures, once you choose a type or style (for example, line drawings), use it consistently. Ask family members, friends, teachers or support workers to use the same visual supports consistently.

Useful resources

There are lots of pictures you can download or buy as printed images and apps that you can use. Some examples are listed below. Inclusion does not mean that the National Autistic Society has endorsed them. You can search our Autism Services Directory or ask the community for suggestions of others.

You should always check the terms and conditions relating to the use of images that you download and any costs involved.

More information

Gerhardt, P, Cohen, M. (2014) Visual supports for people with autism: a guide for parents and professionals. Woodbine House

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Visual supports are a communication tool that can be used with autistic people. They can be used in most situations, and are adaptable and portable.

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Chapter 58: What are your thoughts on Autism itself?

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Chapter 58: What are your thoughts on Autism itself?

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"I think that people with autism are born outside the regime of civilization. Sure, this is just my own made-up theory, but I think that, as a result of all the killings in the world and the selfish planet-wrecking that humanity has committed, a deep sense of crisis exists. Autism has somehow arisen out of this. Although people with autism look like other people physically, we are in fact very different in many ways. We are more like travelers from the distant, distant past. And if, by our being here, we could help the people of the world remember what truly matters for the Earth, that would give us a quiet pleasure."

Higashida, Naoki. The Reason I Jump (p. 112)

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Three Dimensions of the Self-system

The self system is a complex concept that involves "a multitude of notions of the self" ( Zahavi, 2010, p. 548). When investigating the "multifaceted character of self," one has to be able to tell the difference between "types of self-awareness," and understand "how they relate to each other" ( Zahavi, 2010, p. 549). In general, current research in the field mainly explores the self in individuals with ASD from one of the following three dimensions: an experiential dimension, an interpersonal dimension and a narrative dimension ( Zahavi, 2010).

Early research aimed at identifying a general impairment of self-experience and self understanding in individuals with ASD falls under the category of experiential dimension. Under this framework, the mechanism that one accesses to one's own mind is the same as one employs to understand mental states of others, which means, the same mediating theory goes for both self and other ( Carruthers and Smith, 1996; Frith and Happé, 1999). For example, participants with a diagnosis of ASD were asked to complete a standardized protocol to examine their performance on a certain task, then comparison will be made with typically developing peers on the same task to see how the two groups perform differently. However, this approach has been criticized recently due to conflicting research findings ( Zahavi, 2010). For example, in Baron-Cohen's (1989) earlier publication, he believed children with autism were mind-blind and had little awareness of their own mental states; but then in his later work, he stated that children with classic autism singularly focus on the self ( Baron-Cohen, 2005).

More recent research, on the other hand, takes on the interpersonal dimension method targeting specific deficits related to the self ( Zahavi, 2010). Technically, it refers to a dimension of self that is basically reflected by, or mediated through, the perspectives of others. In other words, it focuses on "the capacity to understand and adopt the evaluative perspectives of others on oneself," and "to that extent, impairments on the level of interpersonal engagement will have ramifications for the subsequent development of various aspects of self" ( Zahavi, 2010, p. 550). For example, as mentioned previously, when an individual with ASD shows impairments in recognizing others' facial expressions (i.e., emotional states), he/she will not know how to respond appropriately to match the social situation, which may result in peer rejection ( Bauminger et al., 2003). Repeated social failures are associated with emotional issues such as social anxiety or depression ( Bauminger et al., 2003). This will definitely have a negative impact on the development of self in individuals with ASD.

The third approach is focused on the narrative dimension of self. Basically, according to the narrative approach, information about the self is collected via self narrative, from which we can synthesize "the diverse and heterogeneous aspects of life" and coordinate "different temporal dimensions," as well as establish "a web of semantic relations that link past, present and future events into a meaningful whole"; the narrative self includes investment of others, just like "the story of any individual life is always interwoven with the stories of others" ( Zahavi, 2010, p. 551). When this approach is used to explore the self in individuals with ASD, their own voice can be better heard.

In summary, the three dimensions are approaches that can be used to analyze various aspects of the self-system in individuals with ASD from a philosophical perspective. They are interrelated, and individuals with ASD can have selective impairment. The following section provides a brief review of existing literature exploring various aspects of the self involving individuals with ASD using the above three approaches.

Experiential Dimension Approach

Capps et al. (1995) conducted the first comparative study examining the relationships between perceived self-competence (i.e., self-perception of personal worth and efficacy), cognitive ability, understanding of emotional states, and parent report of social adaptation in 18 preadolescents and adolescents with high-functioning autism (HFA) and 20 comparison peers. The participants were asked to complete the Perceived Competence Scale for Children (SPPC, Harter, 1985) and to identify the four emotional states presented to them. In addition, parents of children with HFA were asked to complete the Vineland Adaptive Behavior Scales ( Sparrow and Cicchetti, 1989) to find out their children's social and adaptive competencies in the following four domains: communication, daily living skills, socialization, and motor skills.

Results suggested that overall participants with HFA perceived themselves to be less competent than their comparison peers in all but the cognitive domain. When correlating with IQ, results indicated that, in the HFA group, participants with higher IQ scores seemed to perceive themselves as less competent in the social domain than those with lower IQ scores, but have better understanding of emotion in self and others. However, in the comparison group, IQ was found to be positively correlated with their perceived cognitive but not social competence. Parent reports showed that in the HFA group, participants with higher IQ who perceived themselves less social competence displayed less emotional distress, such as sadness or fear, than those who have lower IQ but perceived greater social competence. Researchers concluded that HFA participants with higher IQ who were able to better understand emotions might have greater self-awareness allowing them to see the difference (e.g., social limitations) between themselves and typically developing peers.

A later study that sought to replicate the above study found slightly different results. Vickerstaff et al. (2007) also used the SPPC to investigate self-perceptions of social limitations and relationship between self-perceived social deficits and depression in 22 children and adolescents with HFA. Results also confirmed Capps et al. (1995)'s findings that the higher IQ the participants have, the lower level of self-perceived social competence, and vice versus. However, an important difference emerged showing that participants with higher IQ who displayed lower self-perceived social competence actually self reported higher level of depression symptoms, in contrast to the original study the parents reported fewer depression symptoms in HFA participants with higher IQ ( Capps et al., 1995). The researchers reasoned that an increase in awareness of their own social communication deficits (e.g., unable to fit in their peers' social world) and their inability to remedy these social situations may contribute to the development of such emotional distress including symptoms of depression and anxiety. Vickerstaff et al. (2007) also stressed that it is the child's self-perceived social competence that relates to depression symptoms, not the actual level of their social competences as rated by their parents and teachers.

To examine the understanding of own inner mental states in adolescents with AS, Dritschel et al. (2010) compared 22 participants with AS and same number of typically developing peers. Results showed that adolescents with AS had more difficulties in this aspect of social functioning than their typically developing peers or than adults with the same condition (i.e., AS). Specifically, due to their awareness of own social skills limitation and their difficulty in understanding self inner mental states, adolescents with AS tended to "overestimate other people's social competence" (p. 517). For example, adolescents with AS would consult "a comparison person to know more about their own inner mental states than themselves" (p. 515), suggesting "a poorly differentiated self-identity may underline social difficulties" (p. 517), and can cause emotional issues such as depression and anxiety. This is consistent with existing research findings ( Attwood, 1998; Gillott et al., 2001; Bauminger et al., 2003).

A recent Japanese study ( Yoshimura and Toichi, 2014) yielded similar findings. They examined self-consciousness (a type of self-awareness) in 18 adolescents with AS, 19 with PDD-NOS and 19 typically developing as control group using an episodic memory task (i.e., self-reference effect). Results showed that both the PDDNOS group and the control group did very well, but the AS group did not. The researchers found that both ASD groups (i.e., PDDNOS and AS) showed an atypical pattern of relationship between memory performance and IQ. Based on the results, the researchers believed that unlike individuals with AS, individuals with PDDNOS may have the same level of self-consciousness as their typically developing peers. However, maybe due to their unique cognitive process (e.g., being aware of what was going on around them but unable to self-regulate own behaviors), the way of being self-conscious in this group seemed atypical, which lead to social impairments similar to those experienced by the AS group. The researchers also pointed out the relationship between psychiatric disorders and the level of self-consciousness in ASD. As generally recognized (e.g., Mazurek and Kanne, 2010), the higher IQ a person with ASD has, the more insight and self-awareness of own deficits in three core areas (i.e., social, communication and behavior domains) he/she has, which can cause anxiety/depression. Thus, it is not surprising that individuals with high functioning ASD show more anxiety/depression symptoms than those who are low functioning on the spectrum.

Similarly, Elmose and Happé (2014) examined accuracy of judging own memory performance in response to social vs. non-social stimuli in a group of children with ASD in comparison to a group of typically developing (or TD) children. Results indicated comparable levels and patterns of accuracy in the ASD and TD groups, with ASD group being more accurate in judging own memory for non-social than social stimuli, and the opposite pattern for the TD group.

Schriber et al. (2014) examined personality and self-insight in individuals with ASD. They first compared Self-Report of Big Five personality traits in adults with ASD and TD controls, then in children/adolescents. Results suggested that personality differences between ASD and TD individuals (1) were evident in both children/adolescents and adulthood; (2) were similar for men and women; (3) were found via self- and parent report. Compared to their TD peers, individuals with ASD tended to more Neurotic and less Extraverted, Agreeable, Conscientious, and Open to Experience. Researchers also found that these personality trails predict ASD diagnosis well. The researchers also assessed the level of self-insight in these two group by examining the differences in self-other agreement and self-enhancement (vs. self-diminishment) biases (in the personality protocol mentioned above) by comparing the data collected via self-report and parent reports. The study failed to find significant difference in self-insight. However, results suggested that although individuals with ASD had similar level of insight into self-other agreement to TD control group, individuals with ASD had a tendency to self-enhance, while TD individuals to self-diminish.

Interpersonal Dimension Approach

In a study examining the relationship between social acceptance, internalizing and externalizing problem behaviors, perceived social skills and friendships, Viecili et al. (2010) collected data from 40 children and adolescents with autism via self report, where parents were interviewed for the number of friends their child had. Results showed that social acceptance was positively correlated with social skills and number of friends in school and negatively correlated with internalizing behaviors including symptoms of anxiety, depression, or low self-esteem. Consistent with previous research, these findings indicate that greater social acceptance may also have a positive impact on self-concept of youth with developmental disabilities including autism ( Weiss et al., 2003).

Another study aimed at measuring perceptions of social problems and adaptive behaviors in children and youth with AS yielded somewhat different but insightful findings. Barnhill et al. (2000) used the Behavior Assessment System for Children (BASC, Reynolds and Kamphaus, 1992) to investigate the perception difference between parents (parent rating scale), teachers (teacher rating scale), and student self (self-report of personality). A total of 20 individuals with AS participated in the study. Results revealed that there was significant difference in perceptions between parents and the teachers in most sub-domains. In general, parents reported high-level mental, emotional, and behavioral problems in their children. Teachers reported similar but much less severe symptoms. Results also showed the self perceptions of individuals with AS were distinctly different from parents' and teachers'. Students themselves were not aware of having these problems (e.g., they perceived themselves to be similar to peers, or their responses were in the average range) and still felt positive about their general social skills. Researchers concluded that children/youth with AS lack self awareness or denial of their disability. Mazefsky et al. (2011) argued that although self-report measures by individuals with ASD may be able to offer valuable information to some extent, professionals who work with this population should not rely too heavily on self-report instruments for decision-making, better coupled with other data collection approaches such as observation or parent and/or teacher report, to get a more objective view.

Self-Narrative Approach

This section reviewed several studies using self-narrative approach to measure the self in individuals with ASD. Lee and Hobson (1998) used Damon and Harter's Self-Understanding Interview (or SUI, 1988) to measure the self-concept of social experiences in children and adolescents with autism and intellectual disability (ID). Results from the SUI showed that compared to their peers with ID, participants with autism tended to talk less about their social experiences; however, they were able to describe themselves perfectly in physical, active, and even psychological terms. Researchers hypothesized that these individuals seemed to be less concerned about the issues of their social relationships and interactions with others. This indicated some individuals with ASD might have selective impairments in the psychological or interpersonal self, which were also referred to the so-called theory of mind deficits that prevented them from understanding their own social deficits ( Baron-Cohen, 1995). Williams (2010) believed individuals with ASD would apply an alternative, compensatory mechanism to assist themselves in understanding mental states of own or of others when they have a selective theory of mind deficit, for example, via memorizing social or behavioral rules.

Farley et al. (2010) replicated the above study. They employed a modified version of Damon and Harter's (1988) self-as-subject interview, and focused on narratives of 16 adolescents with HFA or AS and a comparison group of typically developing peers, aiming at examining their ability to conceptualize self through the perceptions of other. The participants were asked to conceptualize themselves from others' perspectives. Results showed although there was no significant difference in the ability to self-conceptualize under both the categories of continuity and distinctiveness between adolescents with ASD and their comparison peers, the ASD group had more difficulty in self-conceptualization of agency, which was defined as "the information, influences, and control of the self" ( Farley et al., 2010, p. 526). The researchers argued that only certain aspects of the self in individuals with ASD are impaired, and should be examined separately to fully understand the specific strengths and needs of individuals with ASD.

In a more recent study that examines self presentation skills of high-functioning children and adolescents with ASD ( Scheeren et al., 2010), the participants were asked to describe themselves twice, first without any direction from audience (in this case, the audience were the researchers) as a baseline condition, then with audience preference and demands as a direction-guided condition. Results showed both participants with ASD and the comparison group tended to provide a more positive description about themselves under directed condition. However, the ASD group seemed to be less skillful in responding to the audience directions, compared to the comparison group. The researchers reasoned that this might be a result of their theory of mind deficits or their tendency to rigidly stick to moral and social rules.

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Understanding the Self in Individuals with Autism Spectrum Disorders (ASD): A Review of Literature

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When the system of self is explored in individuals with Autism Spectrum Disorders (ASDs), it is important to measure it via both their own perceptions of the self and their understanding of others' perceptions on themselves at a multidimensional ...