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Look at pages 10-13 of The Autistic Girls' Network's white paper: Autism, Girls & Keeping It All Inside 

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Look at pages 10-13 of The Autistic Girls' Network's white paper: Autism, Girls & Keeping It All Inside 

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Here you will find a helpful bullet point list of indicators of an internal presentation of autism.

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Autism in females: what we know and where do we go?

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Duration: 10 mins Publication Date: 22 May 2023 Next Review Date: 22 May 2026 DOI: 10.13056/acamh.13634

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Reasonable adjustments created by the autistic girls network 

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Reasonable adjustments created by the autistic girls network 

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Maja Toudal - autism, women, gender, sexuality

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Maja Toudal - autism, women, gender, sexuality

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Autism & Relationships - Including sexuality

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The one tool that helps me manage anxiety - ABC Everyday

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Energy accounting is a tool that helps Alison relieve and manage depression, anxiety and meltdowns.

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Autistic Voices on Social Media - hearing the lived experience of autistic CYP

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Autistic Voices on Social Media - hearing the lived experience of autistic CYP

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Autistic Voices on Social Media Nov 21 (1)

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The Camouflaging Autistic Traits Questionnaire ( CAT-Q) is a self-report measure of social camouflaging behaviours in adults. It may be used to identify autistic individuals who do not currently meet diagnostic criteria due to their ability to mask their autistic proclivities.

Take the test here:

Who the test is designed for

Adults (age 16+) of average to higher intelligence.

What it tests

The CAT-Q measures the degree to which you use camouflaging strategies. The more you camouflage, the more of your autistic proclivities you are likely able to suppress. As such, a high camouflaging score can also account for lower scores on other autism tests. So if you don't currently meet the diagnostic criteria but you still think you have autistic traits, then this could be why.

The CAT-Q measures camouflaging in general, as well as three subcategories:

Compensation - Strategies used to actively compensate for difficulties in social situations.
Examples: copying body language and facial expressions, learning social cues from movies and books (see Autism & movie talk).

Masking - Strategies used to hide autistic characteristics or portray a non-autistic persona.
Examples: adjusting face and body to appear confident and/or relaxed, forcing eye contact.

Assimilation - Strategies used to try to fit in with others in social situations.
Examples: Putting on an act, avoiding or forcing interactions with others.

Taking the test

The CAT-Q consists of 25 statements, giving you 7 choices for each statement:

1. Strongly Disagree

2. Disagree

3. Somewhat Disagree

4. Neither Agree Nor Disagree

5. Somewhat Agree

6. Agree

7. Strongly Agree

The 25 statements relate to 3 subcategories of camouflaging:

Scoring range: 25-175

Threshold score: 100↑

All items are scored 1-7, with higher scores reflecting greater camouflaging.

We added auto-scoring for the CAT-Q, but should you want or need to self-score, we will explain how to do that in the Self-scoring section. To see how autistic people and neurotypicals score on the CAT-Q, go to the Average scores section. For more information on how to interpret your scores, read the post below.

How reliable, accurate, valid, and up to date is the test?

Research shows robust psychometric support for the CAT-Q.

High internal consistency was found for the total scale (Cronbach's α = 0.94), and the Compensation (α = 0.91), Masking (α = 0.85), and Assimilation (α = 0.92) factors.

Test-retest reliability was good; 30 autistic individuals retook the test 3 months later, and no significant differences were found between scores at both times.

The stability was good for the total scale and the Compensation factor, while moderate stability was found for the Masking and Assimilation factors.

Discussion

Dr. Natalie Engelbrecht:

I like that the CAT-Q addresses some of the problems with the outdated definitions of autism in the research literature. It can also identify a person with autism who might score below the threshold of other autism tests due to Masking.

I scored 143, which is significantly higher than most autistic females ( 124), and autistics in general. That is not a surprise as I have always camouflaged so much that therapists never diagnosed me with autism until age 47. In other words, we can say that my impression management-behaviours that occur in front of others-is excellent.

My Compensation (strategies used to compensate for difficulties in social situations) score of 49 is higher than the 42 average of autistic females. My Masking (strategies used to hide autistic characteristics or pretend to be a non-autistic persona) score is 52 compared to the average 38 of autistic females. And in terms of Assimilation (strategies to fit in with others in social situations), I score 45, which is average for autistic females.

Kendall:

The choices 'Strongly Agree' and 'Strongly Disagree' were an unnecessary complication for me. I often wasn't sure whether to answer strongly, feeling that agreeing or disagreeing was enough. Do I feel strongly? I don't know. Compared to what or who?

Several questions are duplicated with one word slightly changed-they seem to be asking the same thing. I found this puzzling and distracting.

Surprisingly, the test results show I camouflage more than I realize:

Martin:

I noted some very similar statements, such as #9 (I always think about the impression I make on other people) and #18 (I am always aware of the impression I make on other people). This kind of repetition can be particularly helpful for alexithymic people like me who have challenges accessing their emotions at times. By asking something in different ways, I might be urged to explore my feelings more and reflect on my behavior. But also, how you respond to each variation or related concept can reveal new things, and add nuance to your understanding of yourself.

However, I wonder if people would meaningfully differentiate between #9 and #18 when doing the test. And if not, does adding a substantially different statement relating to masking not result in a better metric to quantify masking?

I also wonder why Compensation consists of 9 items, while the other two categories consist of 8 items. Does this not result in skewed subscales? Either way, intuitively my scores seem to reflect my social behavior; and having done the test twice, my results are pretty consistent.

The self-scoring process is daunting though, especially if you have dyscalculia. I kept having a discrepancy between my total scores ( 118 and 128) and adding up the subscale scores ( 121 and 125), so clearly I kept miscounting somewhere. But we implemented an auto-scoring script to the test below, so no one needs to struggle any longer to do the CAT-Q.

Please read each statement below and choose the answer that best fits your experiences during social interactions.

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The Camouflaging Autistic Traits Questionnaire (CAT-Q)

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The CAT-Q is a self-report measure of social camouflaging behaviors in adults, used to identify camouflaging behaviors in autistic people.

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If you are autistic, you have probably heard of masking and/or camouflaging. In a broad sense, it's the process of changing or concealing one's natural personality in order to "fit in", or perhaps more specifically in order to be perceived as neurotypical.

Although both these terms are often used interchangeably, research from the last few years has shown that there are a few distinct subcategories of camouflaging. Masking is only one of those subtypes, and arguably isn't the most insidious of the three. So let's explore camouflaging and autism.

Camouflaging

Camouflaging is of course a powerful evolutionary tactic used by many animals to disguise their appearance in order to avoid detection (called crypsis), or to imitate other animals so as to deter predators (called Batesian mimicry). Similarly, social camouflaging refers to strategies used to blend into our social surroundings, or present ourselves as different from who we are. Unlike physical camouflaging, however, it is not so much about being rendered completely invisible, but to camouflage behaviors that might make us stand out in some way. Camouflaging and mimicry is used to be seen in a way that is deemed appropriate by the group(s) we want to be included in.

Some extent of camouflaging is probably inherent to human interaction; we learn social skills to improve social interaction, we adhere to social conventions that may not make complete sense to us, and we adjust our behavior as the situation demands. For example, we tend to behave differently at work than at home. But for some people, the need to camouflage is a lot less superficial. Of course, the need to camouflage is proportional to how strange your behavior is perceived to be by your surroundings. And since autism is generally not very well understood by non-professionals-and even many professionals, honestly-it is us autistic people who find we often have a greater need to camouflage.

For other people camouflaging might mean acting, talking, and/or dressing a certain way in order to fit in with a social group of their preference. And while this probably pertains to autistic people as well, our need to camouflage tends to go deeper; because autistic people often have to camouflage their autistic behaviors, so as to minimize the visibility of one's autism in social situations.

Autistic people also show a fear response to calm chemicals, so whereas social situations may be fun for some, for autistic people anxiety is likely to come up more readily, either from social interactions with people you don't know, or an environment that provides a high level of sensory stimulation. As a result, one might seclude oneself more, or stay with the social situations and in all likelihood camouflage more. Either strategy has its consequences; camouflaging is using strategies to fight against potential ostracization,* while avoiding social situations may be an act of self-ostracization.† I will explain later in this post what the (potential) consequences of maintaining this fight are.

To read more about a fear response to calm chemicals, have a look at:

Reasons for camouflaging

In 2019, Eilidh Cage and Zoe Troxell-Whitman published a study that looked into the reasons autistic adults have for camouflaging. In the table below you can see various reasons for camouflaging, and loading scores, which give a measure of how significant that item is as a reason for camouflaging in autistic adults.

To communicate your ideas or work

0.831

To perform well at your job or at university

0.791

To aid working with classmates or colleagues

0.736

To get others to take you, your ideas, or work seriously

0.731

To reduce awkwardness in social interactions

0.551

To demonstrate that I am a responsible person

0.477

But I think more telling were the participants' responses when they were asked what other factors cause them to camouflage. They followed 5 major themes:

Camouflaging subtypes

Based on research from 2018 by Laura Hull et al., the following 3 subcategories of camouflaging were defined:

Compensation - Strategies used to actively compensate for difficulties in social situations.
Examples: copying body language and facial expressions, learning social cues from movies and books (see Autism & movie talk).

Masking - Strategies used to hide autistic characteristics or portray a non-autistic persona.
Examples: adjusting face and body to appear confident and/or relaxed, forcing eye contact.

Assimilation - Strategies used to try to fit in with others in social situations.
Examples: Putting on an act, avoiding or forcing interactions with others.

In the diagram below, you can see all 25 items of the social camouflaging model; 9 for compensation, 8 for masking, and 9 for assimilation.

Based on the social camouflaging model, the Camouflaging Autistic Traits Questionnaire ( CAT-Q) was developed. For more information on the validity of the model, how autistics and neurotypicals score on the CAT-Q, or if you want to take the test yourself, have a look at the following post:

Consequences of camouflaging

Research from 2017 by Laura Hull et al. indicates that motivations for camouflaging include fitting in and increasing connections with others. The short- and long-term consequences of camouflaging, they show, include exhaustion, challenging stereotypes, and threats to self-perception. So it's interesting that the very attempt to increase connections with others by means of masking leads to a disconnected or distorted self.

Here is a list of the consequences of camouflaging as reported by various studies, as well as autistic people themselves:

Research from 2020 by Jonathan Beck et al. also showed that for women who reported above-average levels of camouflaging:

Camouflaging was associated with having thoughts about suicide and struggling to function in everyday life.

Trying to camouflage autistic traits was associated with mental health challenges, regardless of whether those traits were very mild or more severe.

I also wrote a more narrative-driven article on the consequences of masking, which you can read here:

Consequences by subtype

Now that I've covered both the subcategories of camouflaging and the consequences, I want to talk a bit more about the consequences of the subcategories. People often stress the consequences of masking, but if I look at the items of the social camouflaging model above, masking doesn't seem to be the most insidious. Whether by design or happenstance, the subcategories actually seem to be listed in order of least to most harmful to the self. Here is my assessment of the three subcategories:

Compensation

Compensation is basically the acquisition and application of social skills through internalizing scripts. I would say this is nothing more than learning and using social skills. However, it's compensating in that it's an effort to internalize social rules that aren't intuitive to us. Since it takes a deliberate effort to respond appropriately in social settings, it can be immensely exhausting to participate. Compensation probably doesn't go directly at the expense of the self. Yet the draining nature of this process can still impact our mental health.

Speaking for myself, back when I worked at a design studio, at the end of the day I would come home absolutely exhausted; I would rest for two hours, then do some grocery shopping, and then eat and rest some more. And it's not that I act like a social butterfly at work. I get completely drained just being around my colleagues, trying to anticipate what they say and respond appropriately, and have the occasional social exchange during lunch. On Fridays, my bosses and colleagues would stop working early and go outside to enjoy a beer together. I would always stay in the studio and continue working. My bosses were puzzled by that. Why wouldn't I join them and be social? I wouldn't because it takes too much out of me to stand there and think of things to say. Besides, I don't like beer. I got a lot more satisfaction out of getting some work done than out of socializing with my colleagues.

By compensating less, I get drained less. But as a consequence, it's a lot harder for me to develop emotional relationships with colleagues, classmates, etc. And looking at the group dynamics, I noticed that made a difference. My colleagues and bosses liked me, but since I was less approachable to them, I would be included less in discussions, jokes, and probably even projects and job opportunities.

Masking is the active suppression of the telltale signs of anxiety and (other) autistic features in order to maintain the appearance of confidence and social prowess. If you look at the individual items of masking listed in the social camouflaging model, they don't seem that insidious. For example, monitoring your face and body to appear interested in others is something presumably most people do. But what if your face looks naturally uninterested, so your neutral look often causes awkward situations or even ends up hurting people? What if your tendency to look away from other people's eyes is perceived as you showing deception or a lack of confidence?

Yes, we all regulate our responses to each other. But while a lot of our social behaviors are intuitively understood by others, people aren't trained to understand autistic social behaviors. Since our autonomic responses can deviate from what people expect, autistic people are often confronted with the choice to inhibit their intuitive responses, and express themselves in ways we've learned other people have come to expect. As you can imagine, this is even more draining to maintain. And it's a lot less superficial than compensation. Compensation is trying to keep up with others socially. But masking is hiding aspects of ourselves in order to fit in, or simply to make social interactions go smoothly. If we don't mask, we risk being excluded.

For me, masking is too much. If I focus too much on assessing the emotional states of others, anticipating them, and responding in a way they appreciate or expect, I have less brainpower to dedicate to the content of what I want to share. But as a consequence, people would find me unapproachable, and I would be left out of many things. I particularly noticed this at the art academy. When it came to projects where we had to form groups to work together, I was generally one of the few people that found no people to work with. Oh there were plenty of people I would love to have grouped with, but they already grouped with other people. Yet people did come to me for ideas, so it's not that people didn't want to work with me because I lacked talent. I noticed a big difference in our motivations for working with others; I wanted to work with people that had great ideas and knew how to execute them, while my classmates seemed largely driven by social factors. They wanted to work with people they clicked with.

If you mask less, as an autistic person you might find people click with you less, which can have a lot of consequences for personal relationships, your career, and more. But if you mask more, you may start feeling like you have to alter who you really are for people to like engaging with you.

Assimilation

Assimilation is all about trying to fit in. This is masking on a much deeper level, as it's no longer about covering up some proclivities, but about presenting as someone you are not, so as to avoid being excluded. In assimilation, you have to force yourself to engage socially, or avoid it altogether. To the extent you do force yourself to engage, you basically have to put up a performance. Some autistic women reported they consciously "cloned" themselves based on a popular girl in their class whilst at school, and would imitate their conversational style, intonation, movements, dress-style, interests, and other mannerisms, in minute detail.

Personally, I have little experience with this, simply because it's way too draining and difficult for me to do and maintain. But a very distinct risk of assimilation is also that you can lose sight of who you are. As I wrote in Masking: is it good or bad?, the more you present yourself as someone else, the less time you spend being who you actually are, resulting in the gradual diminishment of the self. This will have a major impact on both your sense of self and your mental health in general. Research from 2020 by Sarah Cassidy et al. indicated that assimilation, in particular, is significantly correlated with suicidal thoughts and behaviors. So when people talk about the dangers of masking, they are most likely describing assimilation in particular.

Camouflaging is a common social strategy in autism. Some of it is part of social skills, but a substantial part of camouflaging negatively impacts autistic people's wellbeing, either because it constantly drains them, or because it actively eats at their soul. And while you may hear a lot about masking, interestingly but also worryingly, autistic people actually score highest on assimilation-the most insidious aspect of camouflaging.

For more information on how autistic people and neurotypicals score on camouflaging, or if you want to find out how you score, have a look at the post below.

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If you are autistic, you have probably heard of masking and/or camouflaging. In a broad sense, it's the process of changing or concealing one's natural personality in order to "fit in", or perhaps more specifically in order to be perceived as neurotypical.

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The Lorna Wing Centres for Autism are internationally recognised for their pioneering work in the diagnosis of autism and related conditions.

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Beth Rees was diagnosed with psychiatrist illnesses until receiving a diagnosis for autism in her thirties. (Photo: supplied)

Jasmine Anderson was diagnosed with autism a fortnight ago. The 34-year-old, who lives in North Lanarkshire, Scotland, is relieved to receive her diagnosis - but she's angry that it didn't happen sooner. "I've struggled my whole life," she says. "A diagnosis would have brought in more support and self-understanding."

Anderson is a single parent to two children, who are both currently on the pathway to autism diagnosis themselves. But in her schooldays, she remembers having a narrower interpretation of what autism meant. "My understanding of autism was non-verbal people, or people with learning difficulties," she says. "Academically, I did well at school. I struggled with applying myself, but if I was interested in a subject I could study no problem and get As," she remembers.

In her nursing training, she got 98 per cent in anatomy exams. But when it came to practical assignments, Anderson found working with others and reading their body language hard.

When she was in her twenties, her mental health suffered and she was diagnosed with Borderline Personality Disorder. "We're often misdiagnosed," she says.

Her children's autistic symptoms led Jasmine Anderson to consider that she might have autism

Anderson is far from alone in discovering her neurodiversity as an adult. Only one in 20 autistic women were diagnosed in childhood, though awareness is now growing. There is a strong link between mental-health conditions and autism, especially in women, with a new study showing that more than 60 per cent of autistic women and almost 45 per cent of autistic men have been diagnosed with a psychiatric condition by the age of 25, compared with 14 per cent of non-autistic women and nine per cent of non-autistic men.

Almost a quarter of autistic women - 22 per cent - are hospitalised for a psychiatric condition by age 25, five times the number who are not autistic and almost twice that of autistic men. Researchers tracked 13 different psychiatric diagnoses, including anxiety, depression, self harm and sleep disorders in 1.3m people born in Sweden between 1985 and 1997, nearly 7,100 of whom are autistic women and 14,000 autistic men.

In fact, this may be a conservative figure. Dr Amanda Roestorf, head of research at the charity Autistica says: "Research suggests that co-occurring mental-health conditions in autistic people are even higher, at around 70-80 per cent based on research in autistic adults." She says that when it comes to eating disorders, more than one in five women with anorexia is autistic.

For Anderson, it was only when she had children that she started considering if she might be autistic. "My son had sensory issues; he wouldn't tolerate hats or socks, his tantrums were explosive and he'd bang his head against the wall as if he had the highest pain threshold," she remembers. He'd be stimming [self-stimulating behaviour which can include repetitive or unusual movements or noises], flapping his hands and walking on tiptoes." Watching him in noisy or crowded environments triggered memories of her own childhood. "I couldn't make eye contact and was incredibly shy," she remembers.

Her daughter, she says, is harder to diagnose. "She hides it better," she explains. "Females are more intuitively tuned into what society expects of them: being a 'good girl'; minding manners; smiling - we adapt from a young age. She'd get home from nursery or school and then have a meltdown." A meltdown is an intense response to an overwhelming situation. It happens when someone becomes completely overwhelmed by their situation and temporarily loses control of their behaviour.

"I started learning about masking, but people dismissed me because she was so well behaved. We treat different genders differently," says Jasmine. "We allow boys to be more expressive, cheeky, aggressive."

Helen Ellis, co-author of Autism and Masking: how and why people do it and the impact it can have and Equality, Diversity and Inclusion and coordinator at the National Autistic Society, says: "Masking and camouflaging, trying to fit in and please because we want to avoid conflict, comes from a desire to protect yourself from the reactions of other people: when people are happy they are a lot more predictable than when upset."

She sees women of all ages, including their sixties and seventies, seeking autism diagnosis. "People want confirmation and to figure out a key part of their identity," she says.

Dr Sarah Lister Brook, clinical director of the National Autistic Society, says: "Recent research estimates a ratio of one autistic woman for every three autistic men. Women and girls may be more likely to 'mask' what we traditionally think of as signs of autism, which can be exhausting and lead to incredible levels of stress. Without support, many women and girls are misdiagnosed or go on to develop co-existing mental health difficulties like anxiety, eating disorders or depression, and even find themselves in crisis. This is unacceptable. Gender should never be a barrier to getting a diagnosis and the right support."

Beth Rees learned she was autistic last year after struggling with what psychiatrists told her was a breakdown

Beth Rees, a health and wellbeing consultant from Cardiff, now 34, was diagnosed as autistic with ADHD in November last year after initially being misdiagnosed in 2017 because she "wasn't male enough" to be autistic, her hobbies were "too normal" and she didn't appear to struggle. Instead, she was told she had Borderline Personality Disorder.

She was struggling with what psychiatrists told her was a breakdown - "I now know I was in meltdown," she says - and was heavily medicated with antipsychotic medication. "I couldn't drive, couldn't stay awake and lost jobs," she says. "Just because I'm female doesn't mean I should have less access to help and diagnosis."

Beth grew up feeling "different and out of place" and would get upset easily when overwhelmed. "I hid under a table and cried when people sang 'Happy Birthday' to me at a party. Children just thought I was weird," she remembers. But no one mentioned autism until she was 29. Her perspective on problems and creativity is useful in education and work. "Instead of writing reams for my university personal statement, I wrote it as a poem instead," she remembers. "My tutor was a bit dubious, but when it was done, she was impressed."

In 2020, when she sought mental-health help for a meltdown, she received another brush-off. This time, she complained. "I saw a different psychiatrist," she says. "She asked a few questions and then said, 'I'm sorry but I think you've been misdiagnosed. Has anyone ever mentioned you might be autistic or have ADHD?'"

Rachel Morgan-Trimmer, who is autistic, runs training courses for companies to help them understand neurodiversity

It took another year to receive her official diagnosis. "I was so relieved and proud. I cried for both joy but also sadness for the years that no one wanted to know. I was cross that after the 2017 assessment, it took two more meltdowns, an A&E visit, wrong medication and condescension from the NHS to get the diagnosis I needed all along. I lost friends, jobs, my self-esteem, all because I wasn't 'male enough'. For the first time, I'm proud of who I am."

Rachel Morgan-Trimmer, 47, lives in Didsbury, Manchester, with her husband and two children. She was diagnosed autistic last year and runs training courses for companies to help them understand neurodiversity. "In terms of emotions and senses, I'm much more sensitive than most: comments or experiences that most people wouldn't even remember often feel very hurtful and can take a while to get over," she says.

"In terms of physical senses, I'm again more sensitive: I can't bear strong perfume, people sitting near me, or being bumped by someone's bag. I hold myself to high standards: perfectionism, competitiveness and ambition are characteristics you quite often see in people with autism, although they're often not recognised or played down."

She believes men's health is taken more seriously than women's. "The diagnostic criteria for autism, like so many other conditions, is based around male presentations. So while a male autistic might have unusual obsessive interests noticed, a girl may be into more common interests, and the depth of her interest could go unnoticed," she explains. "Girls also tend to be better at social communication generally, and mask more because of social and cultural standards."

Roestorf agrees. "Autistic people with more subtle presentations tend to go under the radar and are too often misdiagnosed or undiagnosed until much later in life. That includes women and girls, people who identify as transgender, non-binary or gender fluid, and even men and boys."

Growing numbers of autistic women sharing their experiences is helpful, Morgan-Trimmer believes. "It's one thing to look at a tick list asking you about car number plates, quite another to read how an autistic woman hated having her hair brushed as a child because it hurt so much," she says. "People are now able to relate to the reality of autism. Autistic women absolutely deserve a diagnosis if they want one, it doesn't matter if they do or don't need it for work, college, or services. It's enough to have it to know yourself."

Lydia Niziblian was 42 before she decided to seek a diagnosis of autism

Lydia Niziblian, 48, a jewellery designer from Cardiff, was diagnosed as having autism at 42, after her eldest child was diagnosed. "All my earliest memories are sensory ones," she says. "Enjoying hugs, hating my beach clothes, crying and not wanting my raincoat on."

She spent time considering whether she wanted a diagnosis. "I was 42, married, had several jobs, a degree, a family, so what was the point? I decided to do it primarily because of why I was seeking it for my child: I don't think it's pointless labelling, it's about understanding why you are the way you are. So many neurodiverse people are intelligent and so good at masking we 'pass' as neurotypical, but often we need a little support, or an understanding of our own needs to function at our best.

"There are beautiful parts to being me, I've certainly never wanted to be anyone else. I wonder: do other people see the same magic in colours, or get the same joy from feeling music you love so loud it vibrates through your very soul, or the peace from quiet and the touch of an animal? It's like having a secret language."

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How autism is being missed in women and girls: 'I wasn't male enough for a diagnosis'

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Jasmine Anderson was diagnosed with autism a fortnight ago. The 34-year-old, who lives in North Lanarkshire, Scotland, is relieved to receive her diagnosis - but she's angry that it didn't happen sooner. "I've struggled my whole life," she says. "A diagnosis would have brought in more support and self-understanding."

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Safeguarding Autistic Girls: Strategies for Professionals

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Buy Safeguarding Autistic Girls: Strategies for Professionals by Jones, Carly (ISBN: 9781787757592) from Amazon's Book Store. Everyday low prices and free delivery on eligible orders.

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Many more boys than girls are diagnosed on the autism spectrum: more than four boys for every autistic girl, according to the latest numbers from the Centers for Disease Control. Researchers point to genetic differences. But clinicians and researchers have also come to realize that many "higher functioning" autistic girls are simply missed. They've been termed the "lost girls" or "hiding in plain sight" because they're overlooked or diagnosed late. They don't fit the stereotypes or their symptoms are misinterpreted as something else. And they may be better at hiding the signs, at least when they're young.

Even when girls' presentation is clearer, they can be overlooked. Take Melissa's two children. Both have an autism diagnosis. But while daughter Lisa's symptoms were much more obvious than son Justin's, the girl's were waved off for three years by a variety of clinicians.

"On paper," Melissa says, "she seemed to check all the boxes." Lisa had a significant language delay - she didn't speak in sentences until she was 4 - did no pretend play, and had several meltdowns each day. There were also other signs, like lining up her stuffed animals, spinning in circles, and constantly seeking sensory input. She was also unable to handle any change in routine.

Though Lisa's challenges qualified her for Early Intervention at 18 months, it wasn't until she was 6 that a developmental neurologist would diagnose her with autism.

Melissa's son was also diagnosed at 6 - but by the first clinician who saw him, despite the fact that his symptoms were far less obvious.

"The developmental pediatrician who saw Lisa didn't believe autism was common in girls. He came up with excuses for her behavior and reasons why she couldn't be on the spectrum," Melissa says. "At one point, we were even told that my daughter just had low self-esteem and that's why she didn't speak. And, of course, that her issues were just a parenting problem. We were never told those things about our son."

Autism is a developmental disorder that is marked by two unusual kinds of behaviors: deficits in communication and social skills, and restricted or repetitive behaviors. Children with autism also often have sensory processing issues. But here's the hitch, according to Susan F. Epstein, PhD, a clinical neuropsychologist. "The model that we have for a classic autism diagnosis has really turned out to be a male model. That's not to say that girls don't ever fit it, but girls tend to have a quieter presentation, with not necessarily as much of the repetitive and restricted behavior, or it shows up in a different way."

Stereotypes may get in the way of recognition. "So where the boys are looking at train schedules, girls might have excessive interest in horses or unicorns, which is not unexpected for girls," Dr. Epstein notes. "But the level of the interest might be missed and the level of oddity can be a little more damped down. It's not quite as obvious to an untrained eye." She adds that as the spectrum has grown, it's gotten harder to diagnose less-affected boys as well.

In fact, according to a 2005 study at Stanford University, autistic girls exhibit less repetitive and restricted behavior than boys do. The study also found brain differences between autistic boys and girls help explain this discrepancy.

Wendy Nash, MD, a child and adolescent psychiatrist, adds that girls are more likely to control their behavior in public, so teachers don't catch differences. "A lot of autistic girls get ruled out because they may share a smile or may have a bit better eye contact or they're more socially motivated. It can be a more subtle presentation," Dr. Nash explains. If girls are socially interested but odd, which is the case with the majority of these girls, she adds, "I think people give them a pass."

Dr. Epstein says there's another reason autistic girls are misdiagnosed, or diagnosed later than boys. Girls struggling with undiagnosed autism often develop depression, anxiety or poor self-esteem, and clinicians may not "really dig underneath to see the social dysfunction" caused by autism.

Dr. Nash adds that these girls can also be misdiagnosed with ADHD. "I see a lot of girls who are diagnosed with ADHD when they're young who actually meet the criteria for autism," she says. "There's hyperactivity without as much social impairment or a different kind of social impairment, so the autism is missed."

Another reason girls may not be diagnosed is because they're able to "pass."

"Girls tend to get by," Dr. Epstein says. "They might not understand what's going on but they'll try to just go along and imitate what they see. And they may get away with it to third grade or fifth grade, but once they get to junior high and high school, it shows as a problem."

This has been the case for Lisa, now 13. Melissa says of her daughter, "She is less mature than her typical peers, and girls are so intricate in how they behave socially. It's very difficult for her to maintain friendships because of this and, let me tell you, 13-year-old girls are not very accepting of someone different."

Dr. Epstein says undiagnosed autistic girls end up wondering "what's wrong" with them, which can lead to depression, anxiety and loss of self-esteem. They work so hard to fit in that it wears them out. "That's the thing about imitating," she says. "You don't necessarily 'get' it so you're just trying to do what people do. If you're just trying to mimic and you don't really understand, it makes it pretty rough."

Dr. Nash says less severe autism in girls is often first flagged because of these social issues, or the depression they generate. "In people we call mildly autistic, there are adolescent social problems or they're seeming hyperfocused on a topic and not participating in school to their potential or abilities," she says. "Depression can be more common among high-functioning kids on the spectrum. So they'll come in for something like depression or poor school performance. Then it becomes more clear to me that they have a restricted interest and social communication issues."

Another cost of being overlooked is missing out on early support for skill-building. "We talk about early intervention," Dr. Epstein says. "When the girls are identified late, they've missed out on a lot of social interventions that are much harder later. That's the danger for anybody who gets a late diagnosis."

Dr. Nash concurs, adding that they've missed opportunities to get the proper support in school as well as socially: "Academically, it's harder for them to focus on topics that are not of interest. That's true for people who have ADHD and even to a greater degree for kids who are on the autism spectrum."

Autistic girls may be bullied simply because they're "different." Also, Dr. Epstein says, because these girls miss social cues and want to be liked, their autism can leave them more naïve. This makes them easy prey for someone trying to take advantage of them, be it a bully or a sexual predator. "The girls may be wanting the interaction but not understanding what it's about, what the cues are," Dr. Epstein says. "It can be very easy for them to follow their hormones without an understanding of what the dangers are. And sometimes even if they have been taught, they need ongoing support to be able to maintain safety."

Melissa says this has been true with Lisa. "I've had to think about female issues at a much earlier age than I expected," she says. "We've already had an incident of her being inappropriately touched by a boy, for whom the excuse was made that because he's also disabled, he 'didn't understand what he was doing was wrong.'"

One of her daughter's greatest strengths is how accepting she is of others, Melissa adds. "She always finds the good in people, even when they are mean to her," she says. "But because she is so accepting and kind, others can easily take advantage of her, or bully her, and she won't say anything."

Dr. Nash notes that there's an area of study that's rethinking how to help girls on the spectrum: "There's expanding research on how boys and girls present differently and how our treatments may need to be specified a bit more for a girl's presentation vs. a boy's presentation."

But first the girls need to be identified - and accepted. This will require more awareness and sensitivity on the part of parents, teachers and clinicians.

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Why Many Autistic Girls Are Overlooked - Child Mind Institute

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Many more boys than girls are diagnosed on the autism spectrum: more than four boys for every autistic girl, according to the latest numbers from the Centers for Disease Control. Researchers point to genetic differences. But clinicians and researchers have also come to realize that many "higher functioning" autistic girls are simply missed.

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Research paper on ratio of male-female diagnoses (2017)

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Research paper on ratio of male-female diagnoses (2017)

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Let's talk about autism and periods.

There is little research on the experiences of autistic people and periods, likely due to the narrative of autism still being heavily focused on cis autistic boys and autistic men. However, we know that periods can be harder for autistic people, so we must have this conversation.

Sensory issues can be a huge difficulty for autistic people managing periods. Many report that existing sensory difficulties are worse at this time, rendering them even more hypersensitive to noise, taste and smell, which can create more barriers to managing day to day life. Additional sensory difficulties which come with periods can make this even harder to manage. For example, period products can be harder to use and manage, and the sensory issues from physical pain as well as nausea and other physical side-effects can make this time unbearable.

Autistic people tend to struggle with executive functioning. This means knowing what you need to do and how to do this. For a young autistic especially, this can be really hard when managing their periods. Remembering to carry period products and to change them is hard.

"While most people end up learning how to put a pad on when they get a period, autistic people often need to practice before. For them, it's not just about learning to do something new; it's also all the sensory experiences, the noises, the sounds, the smells."
- Robyn Steward.

Many autistic people, especially young autistic's, report that period pants (particularly ModiBodi!) are a lifesaver in helping them to manage their periods, as they are much more sensory bearable than pads (I would go so far as to say they are very comfy!) and you don't have to remember to change them at school!

Self-regulation and managing emotions is made a lot harder. We can find it hard to recognise our emotions, to understand them and to manage them, and our periods exacerbate this, which can lead to meltdowns, self-harm and complete exhaustion.

Mood swings are a difficult one too. It can take us longer to self-regulate and return to our baseline, so when our emotions are all over the place and we are dealing with the normal stuff autistic people find hard to cope with, and our period too, this is an absolute nightmare.

Some evidence suggests that autistic women are more likely to experience very painful and heavy periods, issues with menstrual hygiene, severe PMS and worse mood/behavioural changes. We need more understanding of this, because it can really affect our life.

Autistic people struggle with change and uncertainty. To suddenly come on your period, which may cause you to cancel plans or commitments due to being in pain and overwhelmed, can lead to meltdowns and high anxiety.

For an autistic child, starting their period can be very overwhelming. They may need extra support and patience in knowing and understanding what is happening. If they start their period without a clear understanding of what they should do and who they should turn to, this can be worse.

Clear communication and explanations without euphemisms and without brushing over the subject are needed. An autistic child needs to know exactly what to expect, what to do if they're at school, what it will look like and what it may feel like.

"Autistic people only really work with the information they're given. If up to that point, the only time they've seen blood is when they have fallen over or if they've been ill, they will associate blood with being broken or damaged in some way."
- Robyn Steward.

There is some evidence and discussion that autistic girls start puberty earlier than non-autistic girls. If you are autistic or parenting an autistic child, the Autistic Girl's Network facebook page has some helpful discussions related to this, and you can seek advice.

The book, 'The Autism Friendly Guide to Periods' by Robyn Steward is amazing. I wish I had this book when I was younger. It's for people aged 9+, with advice on sensory issues, managing hygiene and pain, and includes step by step photo guides on using different period products.

You can find more information here:
https://www.autism.org.uk/advice-and-guidance/professional-practice/menstruation
https://www.menstrual-matters.com/autism/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6223765/

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Let's Talk About Autism and Periods - Authentically Emily

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Let's talk about autism and periods. There is little research on the experiences of autistic people and periods, likely due to the narrative of autism still being heavily focused on cis autistic boys and autistic men.

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The 'Invisible' Black Female's Perspective

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The 'Invisible' Black Female's Perspective

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In 2012 I attained an 'Education and Training" qualification. I progressed within the industry quite quickly, becoming a manager by the age of 21.

I convinced the CEO that I could maximise the company's profits by 30% and smashed that resulting in a 40% profit increase! This is where my journey began in business development and training.

I continued in management in both The Security and Licensed Trade becoming a licensee and DPS in 2016. I continue to consult for many organisations from grass roots to public and private sector.

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In 2012 I attained an 'Education and Training" qualification. I progressed within the industry quite quickly, becoming a manager by the age of 21. I convinced the CEO that I could maximise the company's profits by 30% and smashed that resulting in a 40% profit increase!

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Your Internet Explorer 11 browser is not supported by this site. Please upgrade to a recent browser for the best experience.

Stories from the Spectrum

Bethany Black
- on being a stand-up comedian

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My stand-up is very personal. I tell stories, I overshare. So talking about being autistic has become a central part of my act.

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Your Internet Explorer 11 browser is not supported by this site. Please upgrade to a recent browser for the best experience. Stories from the Spectrum Bethany Black - on being a stand-up comedian

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Carly Jones MBE: being an autistic woman and proud!

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A very warm welcome and many thanks to Dr Ruth Moyse who has kindly written this blog based upon her research "Re-writing the narrative: Lessons about inclusion from autistic adolescent girls who stop attending school".
Adolescent autistic girls are significantly more likely than autistic boys - or non-autistic boys and girls - to be persistently absent from school (Moyse, 2021). Unlike formal exclusions, however, their increasing absence often appears to go unnoticed and unaddressed until many stop attending altogether.

And it matters. Firstly, education is a human right underpinned by law in this country, and the non-attendance of autistic girls is therefore a rights issue. The consequences include not just the loss of the opportunity to learn, but often a significant deterioration in these girls' mental health as well. The development of depression, eating disorders and self-harm were all self-reported by the participants in my recent study.

Well-meaning responses by school may amount to an invitation for the girls to return when they feel able, but this positions the issue as a problem with the child - and for the child to solve. In reality the reason for absence often lies in school and outside the control of the young person. Without an informed effort to understand why they stop attending, the likelihood of a successful reintegration is remote.

So why is it happening?

"There is nothing. I see nothing." Class teacher (Moyse and Porter, 2015)

Firstly, autistic girls may not appear to be experiencing difficulties at school, particularly if they are academically able. Many people still think of autism and 'special educational needs' as observable things; things that can be seen. Indeed, support may be more readily provided for those children who are seen to deviate from established behavioural conventions and expectations in the classroom; who have an impact on their teacher or their peers; or who are assessed as not meeting academic targets. And autistic girls don't always match those descriptions.
"I would be smiling and acting like I was fine. I would be getting on with my work and doing everything I could to fit in. Inside I would be worried and upset and anxious." Rosie
What hope for support, then, for an autistic girl who appears quiet and compliant in school, whose grades are in the required range, and yet who goes home exhausted and ready to explode from the daily effort of trying to survive in a physical and social environment she experiences as hostile? Autistic girls who internalise their distress at school may have their needs underestimated or overlooked, whilst parental concerns resulting from their perspective at home are often dismissed.

Drawing of a smiling person

"Just listen. It's not rocket science, just listen." Daisy
Part of the solution is for school staff to be more informed about autism, so that they are not swayed by outdated information and harmful stereotypes. This means listening to autistic people. In fact, the best way to learn about what an autistic girl needs to thrive in school is to ask her.

It means being more curious. An autistic girl who frequently is not where she should be - not on the playground at lunch or in a particular lesson - is removing herself for a reason. Many autistic girls report high levels of bullying and sensory overwhelm in school, for example. Providing the means for her to leave (such as through an exit pass) may give short-term relief but is not a long-term solution. The cause of the absence needs to be understood and not assumed. It also means schools taking action to resolve the reason for the absence, as otherwise the cycle will repeat and non-attendance increase.

" In my ideal school I would be..."

Drawing with thought bubbles.

Dr Ruth Moyse
Finally, it means prioritising their wellbeing over grades. The non-attending girls who participated in my research wanted to be in school, learning, but this required them first to feel safe, accepted and cared about. Underpinning all of this is the development of trusted relationships.

Moyse, R. (2021). Missing: The autistic girls absent from mainstream secondary schools [PhD, University of Reading]. http://centaur.reading.ac.uk/97405
Additional Information:
Moyse, R., & Porter, J. (2015). The experience of the hidden curriculum for autistic girls at mainstream primary schools. European Journal of Special Needs Education, 30(2), 187-201. https://doi.org/10.1080/08856257.2014.986915

Ruth's recent webinar "Rewriting the Narrative for Autistic Adolescent Girls" explains Ruth's research and findings further.

You can also find a list of resources from the research on the National Development Team for Inclusion website

The Summary booklet from Ruth's research can also be found on the National Development Team for Inclusions website

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Autistic girls absent from school - out of sight, out of mind? | Tools for schools - Tools for schools

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Autistic girls absent from school - out of sight, out of mind? A very warm welcome and many thanks to Dr Ruth Moyse who has kindly written this blog based upon her research "Re-writing the narrative: Lessons about inclusion from autistic adolescent girls who stop attending school". Adolescent autistic girls...

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‎How To Fail With Elizabeth Day: S15, Ep9 How To Fail: Greta Thunberg on activism, friendship and failing to be a 'normal' teenager on Apple Podcasts

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Greta Thunberg on activism, friendship and not being a ‘normal’ teenager

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Greta Thunberg on activism, friendship and not being a ‘normal’ teenager

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I'll be honest. I was intimidated by the prospect of this interview. Plus, I never believed it would *actually* happen. I was going to get to speak to arguably the most famous activist on the planet? Yeah, right. As if.

But then - it happened! And Greta Thunberg - the founder of the School Strike for Climate movement who has been nominated three times for a Nobel Prize - was an absolute revelation. She is a deeply intelligent and thoughtful 19-year-old: someone who takes issues seriously but never herself. I laughed SO MUCH more than I thought I would during this conversation. And I learned a lot too - about the climate crisis, yes, but also about what drives this extraordinary young woman and what she thinks of 'failure' on a personal and a global level. We talk about her failure to be a 'normal' teenager, her failure to get politicians to act and how she copes with being trolled by Presidents. Plus what she *really* thinks of everyone from King Charles to Emmanuel Macron. And: her love of carrots.

Whatever your preconceptions might be, leave them at the door. This episode will blow your mind.

--

The Climate Book, created by Greta Thunberg, is out tomorrow and available to order here: https://www.penguin.co.uk/books/446610/the-climate-book-by-thunberg-greta/9780241547472

--

How To Fail With Elizabeth Day is hosted and produced by Elizabeth Day. To contact us, email howtofailpod@gmail.com

--

Social Media:

Elizabeth Day @elizabday

How To Fail @howtofailpod

Greta Thunberg @gretathunberg

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ep9 how to fail: greta thunberg on activism

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friendship and failing to be a 'normal' teenager

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‎How To Fail With Elizabeth Day: S15, Ep9 How To Fail: Greta Thunberg on activism, friendship and failing to be a 'normal' teenager on Apple Podcasts

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I'll be honest. I was intimidated by the prospect of this interview. Plus, I never believed it would *actually* happen. I was going to get to speak to arguably the most famous activist on the planet? Yeah, right. As if. But then - it happened!

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Supporting Autistic Girls at School - Kristy

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* Some adult language * Facebook live video with Melanie Sykes and Harry Thompson

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* Some adult language * Facebook live video with Melanie Sykes and Harry Thompson

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Melanie Sykes Shares Her Inspiring Later In Life Autism Diagnosis | Loose Women

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All About Autism Conference 2019: Autistic Women and Girls

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Women are less likely to be diagnosed AND more vulnerable to several risks associated with autism. These risks are magnified for those with additional marginalized identities. ⁠ Women are less likely to be diagnosed with autism and yet have more co-occurring risks associated with autism than cisgender men. It's a bad equation!

Why Are We Missing Autistic Women?

A recent study suggests we are missing autistic girls at alarming rates. While the often-cited male-to-female autism ratio of 4:1, McCrossin's (2022) mathematical projections, which take into consideration diagnostic bias, suggest the true male-to-female ratio is 3:4 with 80% of autistic girls remaining undiagnosed by the age of 18.

Special Interests Culturally Blend In

Women and girls are more likely to go undetected as their special interests are more likely to culturally blend in as they may be interested in humanitarianism, religion, animals, people, pop culture (bands, popular movies etc.) ( Hull et al., 2020). They are also less likely to present with the same social-communication differences and more likely to mask their differences and socially blend in (although they often experience relationship difficulties which make maintaining friendships difficult ( Hull et al., 2020).

Brain Differences in Autistic Females

Emergent research also suggests that autism impacts different regions of the brain. Supekar et al., 2022 have observed sex-specific brain differences present between autistic females and males.

Girls are more likely to experience impact in regions of the brain that affect fine motor skills, executive functioning, and emotional regulation, while they often show less social-communication differences (Cauvet et al., 2020; Jack et al., 2021; Supekar et al., 2022).

Below is a write-up of the challenges many of us experience. followed by the various risk factors associated with Autism in women (*see note at the end of the article for language and gender use). While articles referenced here don't look at trans/BIPOC (a few include non-binary/genderqueer), we know from other studies these risks are even higher among BIPOC & Trans people.

Far more boys than girls are diagnosed with Autism. While it used to be believed this was because it impacted boys at higher rates, emerging research is pointing to the fact that this may be due to the fact it is missed more often in girls. A recent study suggested that 80% of Autistic women remain undiagnosed at the age of 18.

Behavioral and Neuroimaging studies show that Autism manifests differently in girls. Notably, female social brains are often closer to NT boys' social brains (and their social abilities are similar to NT boys). ( Szalavitz, 2016).

There is substantial evidence that the diagnostic processes are less likely to identify women, particularly in the absence of a co-occurring intellectual disability. Females with average to high IQs are particularly unlikely to receive a diagnosis of autism ( Hull et al., 2020)

To receive a diagnosis, girls must be more significantly impacted by their traits Hull et al., 2020).

Based on twin studies, girls, on average, had to have more externalization behaviors and more intellectual disabilities than boys to receive a diagnosis of autism ( Szalavitz, 2016).

Females fortunate enough to receive a diagnosis are, on average, diagnosed much later in life than males ( Hull et al., 2020).

A fundamental issue with the current diagnostic methods is that the behavioral markers used as criteria are established on pre-existing conceptions of what autistic behaviors look like. These criteria have been developed based on the predominantly white male populations previously identified as autistic. Autistic girls are less likely to meet these criteria even when clinically significant characteristics are identified. This often results in diagnoses of broader developmental disorders or internalization disorders rather than Autism specifically ( Hull et al., 2020)

Autistic women and girls are more likely to experience more sensory issues related to Autism and will often present with less of the typical "social-communication" deficits ( Moseley et al, 2018).

While we are less likely to receive a diagnosis, we are more likely to have complications and risks associated with our Autism. That means we have a decreased ability to receive support and an increased risk of complications. This equation is not a good look. We have increased health, social, and mental health risks. Below is a summary of some of our risk factors:

Health Issues in Autistic Women

Autistic Women are more likely than their Neurotypical peers and autistic cis men to experience health issues. Without an autism diagnosis, it is more likely physical ailments will be minimized/dismissed or untreated. Health issues that are more prevalent among Autistic women include:

Additionally, Autistic folks have an increased risk of:

It is recommended by Kassee, 2020 that physicians regularly monitor and assess Autistic women for health issues. However, without an autism diagnosis, this is less likely to happen, and their medical team won't know the importance of monitoring their systems.

Furthermore, many Autistic women may look like "healthy, young women" on the outside and therefore have their symptoms dismissed as "healthy anxiety." A diagnosis helps a person's medical team understand their physical vulnerabilities and helps a person advocate for their health.

Sensory and Physical Ailments in Autistic Women

Beyond the health risks listed above, many Autistic women people experience some form of chronic fatigue, migraines, and other physical ailments. Many have come to be treated as "hypochondriacs," or symptoms may have been interpreted as "psychosomatic."

Internalization Symptoms of Autistic Women

When we experience emotional pain, we typically do one of two things with it: 1) Turn it inward (internalization) or turn it outward (externalization).

Symptoms can either be internalized (turned inward) or externalized (turned outward). Examples of externalized behaviors are conduct disorders and angry outbursts. Depression and anxiety are more commonly turned inward and considered internalization of the pain.

Depression and anxiety are both considered internalizing problems common among Autism. Autistic girls and women are more likely to internalize symptoms, whereas boys are more likely to externalize (aggression, behavior difficulties, etc.). Notably, research demonstrates that the efforts that go into camouflaging can result in increased stress, anxiety, and depression ( Hull et al., 2020).

Disordered Eating

Segewick et al., 2021 found that Autistic people were 2x as likely as non-autistic people to have an eating disorder. Disordered eating is a common form of internalization among Autistic women.

One study found that 70% of women in an inpatient eating disorder clinic had undiagnosed autism. While the rates vary, most researchers agree that about 23% of people diagnosed with anorexia nervosa are Autistic ( Wentz et al., 2005). However, many agree that this is likely an underrepresentation because autism often goes undiagnosed within this population ( Westwood and Tchanturia). For more about the similarities in between anorexia and autism, see The Invisible Line between Autism and anorexia (Arnold, 2016).

Victimization/Intimate Partner Violence and PTSD

Autistic women are more likely to be survivors of violent victimization. In one study, Autistic adults were 7.3 times more likely to endorse having experienced sexual assault from a peer during adolescence ( Weiss and Fardella).

Some risk factors include:

challenges in social reasoning (not knowing when someone is taking advantage of us)

missing contextual cues (also makes it difficult to know when someone is trying to manipulate us)

a tendency to take things literally

These risks are highest among women and genderqueer people. Reuben et al., 2021 study included 687 self-identified Autistic people. They looked at interpersonal trauma and PTSD. Below is a summary of their findings:

72% of participants reported experiencing sexual assault, other unwanted or uncomfortable sexual experiences, or physical assault.

44% percent of participants met the criteria for posttraumatic stress disorder (PTSD),

50% of those who met the criteria for PTSD reported experiencing interpersonal traumas (IPT)

Autistic women and genderqueer people experienced a significantly higher number of traumas and were significantly more likely than cis-men to experience sexual intimate partner violence and meet the criteria for PTSD.

Haruvi-Lamdan et al., 2020 found that autistic females reported more negative social life events than autistic men and had a higher likelihood of PTSD. Their researchers suggested Autistic women are at an increased risk of developing PTSD.

Suicide Risk for Autistic Women

A recent longitudinal study involving 6.5 million people found that autistics were 3x more likely to both attempt suicide and to die by suicide. Suicidality was particularly high among youth and young adults. They also found suicide risk was more elevated among women than men. Women on the spectrum are at a higher risk than both men on the spectrum and neurotypical females ( South et al.)

One large study found that while Autistic men were 6.5 times more likely to die by suicide, Autistic women were 13 times more likely to die by suicide! ( Hirvikosi et al., 2018). Autistic women are silently suffering while going missed and misdiagnosed at alarming rates.

Co-occurring Mood Disorders in Autistic Women

It is well documented that autistic people are more likely to have mood disorders (anxiety and depression) than allistic people. This is true across all genders. However, Autistic women and non-binary people had higher rates of depression and anxiety than men (and had similar rates to each other) ( Segewick et al., 2021).

In summary, we are less likely to have social communication difficulties but more likely to have depression, anxiety, eating disorders, co-occurring health disorders, more debilitating sensory sensitivities, suicidality, self-harm, victimization, and PTSD.

Given the heightened emphasis on social-communication aspects of Autism, some may be skeptical of a person seeking diagnosis when they can "pass" as neurotypical. But there is so much more to Autism than social-communication patterns.

It's time we rethink Autism presentations and diagnose and support all presentations. Accurate diagnoses and supports save lives.

Future Resources for Autistic Women

Intrigued about Autism and women? Below are a few of my favorite books that highlight the experience of autism and girls (affiliate links).

Divergent Minds: This book covers many different forms of neurodivergence, including Autism. The author does a good job of capturing the intersection of female identity and neurodivergence. This was one of the first books I read on my Autism self-discovery journey. Great for women who are self-discovered/diagnosed in mid-life.

Aspergirls: A great guide for girls, their families, and counselors looking to understand autism and girls. This book is written by an autistic girl and draws on her experience and 35 other Autistic women she interviewed. Would be a great handbook/guide for younger people new to diagnosis (and great for their parents).

The Awesome Autistic Go-To Guide: Written for teens and tweens. Not specifically for girls, but does a great job of including inclusive messages on autism. I appreciated how they naturally wove in gender and sexual diversity (given the high percentage of AFAB who are genderqueer, lesbian, or bisexual this is a must inclusion).

This podcast with Dr. Donna Henderson walks through the DSM-5 criteria for autism through the lens of girls and women.

Notes:
**A note about Gender Phenotypes: I find it more helpful to talk about different presentation styles. Some of the information below draws from this gendered way of seeing Autism. It is important to note, anyone (women, genderqueer, trans, men) can present with "masculine" presentations, and anyone can present with more "female" presentations of Autism (I know plenty white, cisgender men who present with so-called "female" autism). I hope this next wave of autism awareness will help us find language to articulate the different presentations of Autism in a way that moves beyond the gender binary. Over the last several years, increasing attention has been given to the "Female Autism Phenotype." I have found this very helpful for understanding my experience and am grateful for the attention finally being given to diverse expressions of Autism. At the same time, this language risks continuing to gender autism.

***A Note About Gender language: When possible, I try to find research that includes genderqueer people (especially given the high percentage of genderqueer people within the Autistic community, however, most research is still done on the binary, which is one of the research biases that impacts genderqueer people. Original article and infographic included AFAB and women. However, after learning more from the Trans community, I recognized the problematic nature of conflating these two concepts. So while many of the medical experiences described above will also apply to AFAB genderqueer people, I have opted to separate out these conversations. Y ou can read more specific experiences about Trans Autistic experiences over here in this infographic.

Citations:
Arnold, Carrie. 2016. The Invisible link between autism and anorexia. Spectrum News. Retrieved at: https://www.spectrumnews.org/features/deep-dive/the-invisible-link-between-autism-and-anorexia/

Freeman, A., Mergl, R., Kohls, E. et al. A cross-national study on gender differences in suicide intent. BMC Psychiatry 17, 234 (2017). https://doi.org/10.1186/s12888-017-1398-8

Haruvi-Lamdan, N., Horesh, D., Zohar, S., Kraus, M., & Golan, O. (2020). Autism Spectrum Disorder and Post-Traumatic Stress Disorder: An unexplored co-occurrence of conditions. Autism, 24(4), 884-898. https://doi.org/10.1177/1362361320912143

Hull, L., Petrides, K.V. & Mandy, W. The Female Autism Phenotype and Camouflaging: a Narrative Review. Rev J Autism Dev Disord 7, 306-317 (2020). https://doi.org/10.1007/s40489-020-00197-9

Kassee, C., Babinski, S., Tint, A. et al. Physical health of autistic girls and women: a scoping review. Molecular Autism 11, 84 (2020). https://doi.org/10.1186/s13229-020-00380-z

Moseley, R.L., Hitchiner, R. & Kirkby, J.A. 2018. Self-reported sex differences in high-functioning adults with autism: a meta-analysis. Molecular Autism 9, 33. https://doi.org/10.1186/s13229-018-0216-6

Reuben, K., Stanzione, C.M, and Singleton, J.L., Autism in Adulthood. Sep 2021.247-256. http://doi.org/10.1089/aut.2020.0073

Sedgewick, F., Leppanen, J. and Tchanturia, K. (2021), "Gender differences in mental health prevalence in autism", Advances in Autism, Vol. 7 No. 3, pp. 208-224. https://doi.org/10.1108/AIA-01-2020-0007

Szalavitz, Maia, 2016. Autism-It's Different in Girls. Scientific American. Retrieved At: https://www.scientificamerican.com/article/autism-it-s-different-in-girls/

Weiss, J. A., & Fardella, M. A. (2018). Victimization and Perpetration Experiences of Adults With Autism. Frontiers in psychiatry, 9, 203. https://doi.org/10.3389/fpsyt.2018.00203

Wentz, E., Lacey, J. H., Waller, G., Råstam, M., Turk, J., & Gillberg, C. (2005). Childhood onset neuropsychiatric disorders in adult eating disorder patients. A pilot study. European child & adolescent psychiatry, 14(8), 431-437. https://doi.org/10.1007/s00787-005-0494-3

Women are less likely to be diagnosed AND more vulnerable to several risks associated with autism. These risks are magnified for those with additional marginalized identities. ⁠ Women are less likely to be diagnosed with autism and yet have more co-occurring risks associated with autism than cisgender men. It's a bad equation!

Why Are We Missing Autistic Women?

A recent study suggests we are missing autistic girls at alarming rates. While the often-cited male-to-female autism ratio of 4:1, McCrossin's (2022) mathematical projections, which take into consideration diagnostic bias, suggest the true male-to-female ratio is 3:4 with 80% of autistic girls remaining undiagnosed by the age of 18.

Special Interests Culturally Blend In

Women and girls are more likely to go undetected as their special interests are more likely to culturally blend in as they may be interested in humanitarianism, religion, animals, people, pop culture (bands, popular movies etc.) ( Hull et al., 2020). They are also less likely to present with the same social-communication differences and more likely to mask their differences and socially blend in (although they often experience relationship difficulties which make maintaining friendships difficult ( Hull et al., 2020).

Brain Differences in Autistic Females

Emergent research also suggests that autism impacts different regions of the brain. Supekar et al., 2022 have observed sex-specific brain differences present between autistic females and males.

Girls are more likely to experience impact in regions of the brain that affect fine motor skills, executive functioning, and emotional regulation, while they often show less social-communication differences (Cauvet et al., 2020; Jack et al., 2021; Supekar et al., 2022).

Below is a write-up of the challenges many of us experience. followed by the various risk factors associated with Autism in women (*see note at the end of the article for language and gender use). While articles referenced here don't look at trans/BIPOC (a few include non-binary/genderqueer), we know from other studies these risks are even higher among BIPOC & Trans people.

Far more boys than girls are diagnosed with Autism. While it used to be believed this was because it impacted boys at higher rates, emerging research is pointing to the fact that this may be due to the fact it is missed more often in girls. A recent study suggested that 80% of Autistic women remain undiagnosed at the age of 18.

Behavioral and Neuroimaging studies show that Autism manifests differently in girls. Notably, female social brains are often closer to NT boys' social brains (and their social abilities are similar to NT boys). ( Szalavitz, 2016).

There is substantial evidence that the diagnostic processes are less likely to identify women, particularly in the absence of a co-occurring intellectual disability. Females with average to high IQs are particularly unlikely to receive a diagnosis of autism ( Hull et al., 2020)

To receive a diagnosis, girls must be more significantly impacted by their traits Hull et al., 2020).

Based on twin studies, girls, on average, had to have more externalization behaviors and more intellectual disabilities than boys to receive a diagnosis of autism ( Szalavitz, 2016).

Females fortunate enough to receive a diagnosis are, on average, diagnosed much later in life than males ( Hull et al., 2020).

A fundamental issue with the current diagnostic methods is that the behavioral markers used as criteria are established on pre-existing conceptions of what autistic behaviors look like. These criteria have been developed based on the predominantly white male populations previously identified as autistic. Autistic girls are less likely to meet these criteria even when clinically significant characteristics are identified. This often results in diagnoses of broader developmental disorders or internalization disorders rather than Autism specifically ( Hull et al., 2020)

Autistic women and girls are more likely to experience more sensory issues related to Autism and will often present with less of the typical "social-communication" deficits ( Moseley et al, 2018).

While we are less likely to receive a diagnosis, we are more likely to have complications and risks associated with our Autism. That means we have a decreased ability to receive support and an increased risk of complications. This equation is not a good look. We have increased health, social, and mental health risks. Below is a summary of some of our risk factors:

Health Issues in Autistic Women

Autistic Women are more likely than their Neurotypical peers and autistic cis men to experience health issues. Without an autism diagnosis, it is more likely physical ailments will be minimized/dismissed or untreated. Health issues that are more prevalent among Autistic women include:

Additionally, Autistic folks have an increased risk of:

It is recommended by Kassee, 2020 that physicians regularly monitor and assess Autistic women for health issues. However, without an autism diagnosis, this is less likely to happen, and their medical team won't know the importance of monitoring their systems.

Furthermore, many Autistic women may look like "healthy, young women" on the outside and therefore have their symptoms dismissed as "healthy anxiety." A diagnosis helps a person's medical team understand their physical vulnerabilities and helps a person advocate for their health.

Sensory and Physical Ailments in Autistic Women

Beyond the health risks listed above, many Autistic women people experience some form of chronic fatigue, migraines, and other physical ailments. Many have come to be treated as "hypochondriacs," or symptoms may have been interpreted as "psychosomatic."

Internalization Symptoms of Autistic Women

When we experience emotional pain, we typically do one of two things with it: 1) Turn it inward (internalization) or turn it outward (externalization).

Symptoms can either be internalized (turned inward) or externalized (turned outward). Examples of externalized behaviors are conduct disorders and angry outbursts. Depression and anxiety are more commonly turned inward and considered internalization of the pain.

Depression and anxiety are both considered internalizing problems common among Autism. Autistic girls and women are more likely to internalize symptoms, whereas boys are more likely to externalize (aggression, behavior difficulties, etc.). Notably, research demonstrates that the efforts that go into camouflaging can result in increased stress, anxiety, and depression ( Hull et al., 2020).

Disordered Eating

Segewick et al., 2021 found that Autistic people were 2x as likely as non-autistic people to have an eating disorder. Disordered eating is a common form of internalization among Autistic women.

One study found that 70% of women in an inpatient eating disorder clinic had undiagnosed autism. While the rates vary, most researchers agree that about 23% of people diagnosed with anorexia nervosa are Autistic ( Wentz et al., 2005). However, many agree that this is likely an underrepresentation because autism often goes undiagnosed within this population ( Westwood and Tchanturia). For more about the similarities in between anorexia and autism, see The Invisible Line between Autism and anorexia (Arnold, 2016).

Victimization/Intimate Partner Violence and PTSD

Autistic women are more likely to be survivors of violent victimization. In one study, Autistic adults were 7.3 times more likely to endorse having experienced sexual assault from a peer during adolescence ( Weiss and Fardella).

Some risk factors include:

challenges in social reasoning (not knowing when someone is taking advantage of us)

missing contextual cues (also makes it difficult to know when someone is trying to manipulate us)

a tendency to take things literally

These risks are highest among women and genderqueer people. Reuben et al., 2021 study included 687 self-identified Autistic people. They looked at interpersonal trauma and PTSD. Below is a summary of their findings:

72% of participants reported experiencing sexual assault, other unwanted or uncomfortable sexual experiences, or physical assault.

44% percent of participants met the criteria for posttraumatic stress disorder (PTSD),

50% of those who met the criteria for PTSD reported experiencing interpersonal traumas (IPT)

Autistic women and genderqueer people experienced a significantly higher number of traumas and were significantly more likely than cis-men to experience sexual intimate partner violence and meet the criteria for PTSD.

Haruvi-Lamdan et al., 2020 found that autistic females reported more negative social life events than autistic men and had a higher likelihood of PTSD. Their researchers suggested Autistic women are at an increased risk of developing PTSD.

Suicide Risk for Autistic Women

A recent longitudinal study involving 6.5 million people found that autistics were 3x more likely to both attempt suicide and to die by suicide. Suicidality was particularly high among youth and young adults. They also found suicide risk was more elevated among women than men. Women on the spectrum are at a higher risk than both men on the spectrum and neurotypical females ( South et al.)

One large study found that while Autistic men were 6.5 times more likely to die by suicide, Autistic women were 13 times more likely to die by suicide! ( Hirvikosi et al., 2018). Autistic women are silently suffering while going missed and misdiagnosed at alarming rates.

Co-occurring Mood Disorders in Autistic Women

It is well documented that autistic people are more likely to have mood disorders (anxiety and depression) than allistic people. This is true across all genders. However, Autistic women and non-binary people had higher rates of depression and anxiety than men (and had similar rates to each other) ( Segewick et al., 2021).

In summary, we are less likely to have social communication difficulties but more likely to have depression, anxiety, eating disorders, co-occurring health disorders, more debilitating sensory sensitivities, suicidality, self-harm, victimization, and PTSD.

Given the heightened emphasis on social-communication aspects of Autism, some may be skeptical of a person seeking diagnosis when they can "pass" as neurotypical. But there is so much more to Autism than social-communication patterns.

It's time we rethink Autism presentations and diagnose and support all presentations. Accurate diagnoses and supports save lives.

Future Resources for Autistic Women

Intrigued about Autism and women? Below are a few of my favorite books that highlight the experience of autism and girls (affiliate links).

Divergent Minds: This book covers many different forms of neurodivergence, including Autism. The author does a good job of capturing the intersection of female identity and neurodivergence. This was one of the first books I read on my Autism self-discovery journey. Great for women who are self-discovered/diagnosed in mid-life.

Aspergirls: A great guide for girls, their families, and counselors looking to understand autism and girls. This book is written by an autistic girl and draws on her experience and 35 other Autistic women she interviewed. Would be a great handbook/guide for younger people new to diagnosis (and great for their parents).

The Awesome Autistic Go-To Guide: Written for teens and tweens. Not specifically for girls, but does a great job of including inclusive messages on autism. I appreciated how they naturally wove in gender and sexual diversity (given the high percentage of AFAB who are genderqueer, lesbian, or bisexual this is a must inclusion).

This podcast with Dr. Donna Henderson walks through the DSM-5 criteria for autism through the lens of girls and women.

Notes:
**A note about Gender Phenotypes: I find it more helpful to talk about different presentation styles. Some of the information below draws from this gendered way of seeing Autism. It is important to note, anyone (women, genderqueer, trans, men) can present with "masculine" presentations, and anyone can present with more "female" presentations of Autism (I know plenty white, cisgender men who present with so-called "female" autism). I hope this next wave of autism awareness will help us find language to articulate the different presentations of Autism in a way that moves beyond the gender binary. Over the last several years, increasing attention has been given to the "Female Autism Phenotype." I have found this very helpful for understanding my experience and am grateful for the attention finally being given to diverse expressions of Autism. At the same time, this language risks continuing to gender autism.

***A Note About Gender language: When possible, I try to find research that includes genderqueer people (especially given the high percentage of genderqueer people within the Autistic community, however, most research is still done on the binary, which is one of the research biases that impacts genderqueer people. Original article and infographic included AFAB and women. However, after learning more from the Trans community, I recognized the problematic nature of conflating these two concepts. So while many of the medical experiences described above will also apply to AFAB genderqueer people, I have opted to separate out these conversations. Y ou can read more specific experiences about Trans Autistic experiences over here in this infographic.

Citations:
Arnold, Carrie. 2016. The Invisible link between autism and anorexia. Spectrum News. Retrieved at: https://www.spectrumnews.org/features/deep-dive/the-invisible-link-between-autism-and-anorexia/

Freeman, A., Mergl, R., Kohls, E. et al. A cross-national study on gender differences in suicide intent. BMC Psychiatry 17, 234 (2017). https://doi.org/10.1186/s12888-017-1398-8

Haruvi-Lamdan, N., Horesh, D., Zohar, S., Kraus, M., & Golan, O. (2020). Autism Spectrum Disorder and Post-Traumatic Stress Disorder: An unexplored co-occurrence of conditions. Autism, 24(4), 884-898. https://doi.org/10.1177/1362361320912143

Hull, L., Petrides, K.V. & Mandy, W. The Female Autism Phenotype and Camouflaging: a Narrative Review. Rev J Autism Dev Disord 7, 306-317 (2020). https://doi.org/10.1007/s40489-020-00197-9

Kassee, C., Babinski, S., Tint, A. et al. Physical health of autistic girls and women: a scoping review. Molecular Autism 11, 84 (2020). https://doi.org/10.1186/s13229-020-00380-z

Moseley, R.L., Hitchiner, R. & Kirkby, J.A. 2018. Self-reported sex differences in high-functioning adults with autism: a meta-analysis. Molecular Autism 9, 33. https://doi.org/10.1186/s13229-018-0216-6

Reuben, K., Stanzione, C.M, and Singleton, J.L., Autism in Adulthood. Sep 2021.247-256. http://doi.org/10.1089/aut.2020.0073

Sedgewick, F., Leppanen, J. and Tchanturia, K. (2021), "Gender differences in mental health prevalence in autism", Advances in Autism, Vol. 7 No. 3, pp. 208-224. https://doi.org/10.1108/AIA-01-2020-0007

Szalavitz, Maia, 2016. Autism-It's Different in Girls. Scientific American. Retrieved At: https://www.scientificamerican.com/article/autism-it-s-different-in-girls/

Weiss, J. A., & Fardella, M. A. (2018). Victimization and Perpetration Experiences of Adults With Autism. Frontiers in psychiatry, 9, 203. https://doi.org/10.3389/fpsyt.2018.00203

Wentz, E., Lacey, J. H., Waller, G., Råstam, M., Turk, J., & Gillberg, C. (2005). Childhood onset neuropsychiatric disorders in adult eating disorder patients. A pilot study. European child & adolescent psychiatry, 14(8), 431-437. https://doi.org/10.1007/s00787-005-0494-3

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Women and AFAB people are less likely to be diagnosed with autism and yet have more co-occurring risks associated with autism than cisgender men. 1 in 54 children are diagnosed with Autism. And boys are 4 x more likely to be diagnosed than girls.

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“No you’re not” – a portrait of autistic women

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In this sensitive series of portraits and interviews, photographer Rosie Barnes acknowledges the voices and experiences of autistic women.

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1. Please understand that I often cover up my anxiety, and although I may appear calm and fine on the outside, this does not mean I am actually feeling it inside.

I have learnt to cover my real feelings at school as I want to fit in and not get into trouble. It's hard to hold your real feelings in and pretend to be something you aren't all day. Home is the only place where I feel I can let my real feelings out.

2. Building a good relationship with me is the best way to help me feel calm and be able to behave and be my best. Show me that you like me, by smiling and connecting with me positively when you see me.

I respond really well to feeling liked. Please try not to criticise me or say negative things to me as I will feel that you don't like me.

3. Tone of voice and facial expression are really important to me as I read a lot more into them than other people do. If you have to tell me off, please do it in a calm way, rather than in a cross or harsh voice.

Please don't make sudden loud noises like shouting at me, as this makes me anxious. Sarcasm and criticism make my anxiety levels go sky high. Using nice language puts me at ease and will help me to focus on what you are actually saying rather than how it's making me feel.

4. Please, please, please, I beg of you, don't punish me by doing anything that shames me in front of other people like detentions, making me stand up in front of others or telling me off in public. This is my worst nightmare and my biggest fear in school.

It doesn't make me learn to behave better as I will be so anxious that I'm bound to do more things wrong. Please just speak quietly to me on a one-to-one basis. I absolutely promise I will take in what you are saying better that way.

5. Ask me to do things calmly and pleasantly and try not to make it sound like a command as this instantly escalates my anxiety. For example, you could say, "Would you mind coming up with a good way to make sure you remember your pencil tomorrow?". This is a good way to phrase things for me.

6. Don't ask me lots of direct questions as these feel like demands and the pressure can be really stressful. Say things like: "Would you be happy to share your thoughts?"; "I'm wondering whether you..."; "I notice that..."; "I was thinking you could...".

7. Give me time when asking me questions or when giving me instructions. Don't get impatient with me or I will sense it and will be flooded with stress which makes it even harder to think straight.

8. Don't ask me to make eye contact as a way of showing I am listening - it makes it harder for me to listen. If you really want me to be listening carefully to what you are saying, let me look wherever I need to so I can concentrate.

9. Please don't force me into anything I do not feel ready or comfortable doing. I'm always pushing myself out of my comfort zone, but I can only do it when I feel in control. I will usually give most things a try when I feel ready to. Give me some control by offering choices; this always makes me feel more relaxed and motivated.

10. Most of all, please try to put yourself in my shoes and know that I don't choose to be this much work - this might be annoying for you but believe me, it is 10 squillion times harder for me.

From Libby
Libby Scott is 12 years old and co-wrote her second novel, Do You Know Me? (£6.99, Scholastic), alongside author and teacher Rebecca Westcott. Find them on Twitter at @bloglibby and @westcottwriter.

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Girls with autism - 10 things one pupil wants teachers to know

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1. Please understand that I often cover up my anxiety, and although I may appear calm and fine on the outside, this does not mean I am actually feeling it inside. I have learnt to cover my real feelings at school as I want to fit in and not get into trouble.

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Autism First Signs and Checklist in Girls | Autism SA

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Information about the signs and characteristics of autism, including reasons why girls are diagnosed as being on the spectrum less often than boys.

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139. My Experience of Being Autistic (Part 1) | Showit Blog

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If what you’ve been hearing on the podcast resonates with you, I encourage you to sign up for the waitlist for The Flow Collective and be the first to hear when doors open again.

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There is a lost generation of Autistic women out here. Many of whom are finally coming to self-understanding and seeking support. With the flurry of autistic awareness, it has left patients and clinicians alike scrambling to catch up. We're living at the edge of emergent research, so whether you are a clinician or Autistic yourself, it's normal to feel a bit lost.

Here is a roundup of must-reads for clinicians seeking to advance their understanding of Autistic women:

Autistic Women: Roundup of Peer-Review Articles

Here is a roundup of peer-reviewed articles that have deepened my understanding of Autistic women.
'I was exhausted trying to figure it out': The experiences of females receiving an autism diagnosis in middle to late adulthood"
This phenomenological study captures the experience of women diagnosed late in life. It highlights themes associated with the post-diagnosis process.
Finding the True Number of Females with Autistic Spectrum Disorder by Estimating the Biases in Initial Recognition and Clinical Diagnosis
The researcher argues that once gender bias is factored in, the male to female Autistic ratio is 3:4 (meaning more Autistic females!). The article further suggests that 80% of Autistic females remain undiagnosed by age 18.
The Female Autism Phenotype and Camouflaging: a Narrative Review
This article provides a thorough overview of the Female Autistic Phenotype. This is an essential read for people doing assessments!
Physical health of Autistic Girls and Women: A Scoping Review
This article provides an overview of the health risks Autistic women experience and provides helpful recommendations for medical providers.

Non-Peer Reviewed Sources
Females with Autism: An Unofficial List
I find it a helpful clinical tool, and I will often send my clients to this list if we are beginning to suspect they may be Autistic. This list was developed by Samantha Craft and includes common Autistic experiences/traits among women. While not medically validated, I have found this list insightful and resonates with many Autistic women and girls.

This was one of the first books I read during my self-discovery process and remains my favorite go-to resource. This book covers much more than Autism (ADHD, HSP, sensory processing, and more). This is a great book to provide clients if they are beginning to consider being neurodivergent.

Final Reflection: I am thankful for the Female Autistic Phenotype and the emergent research bridging the gender gap. However, it's also important to remember that many Autistic people assigned female at birth (AFAB) do not fall into the gender binary. And many (but not all) of the constructs discussed in the above articles will also apply to Autistic, AFAB genderqueer people.

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A lost generation of Autistic Women: 6 must-reads - Insights of a Neurodivergent Clinician

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There is a lost generation of Autistic women out here. Many of whom are finally coming to self-understanding and seeking support. With the flurry of autistic awareness, it is no wonder we (clients and therapists alike) are scrambling to figure out this new world. Most training programs do not inc

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Menstruation (periods) for autistic people | Autism Space | Leicestershire Partnership NHS Trust

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Sensory issues One of the most common causes of sensory issues is hygiene products. There are numerous different products available, and there are alternatives to tampons and sanitary towels/pads. You need to do what feels most comfortable for you. Washable period pants and swimwear has become popular, with many high street retailers now making their […]

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Extraordinary Attorney Woo has rightfully become the global show of the summer

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The heartwarming South Korean legal drama is topping Netflix charts for good reason

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[Ed. - April 2, 2022 is World Autism Awareness Day.]

Being autistic, but not diagnosed, can lead to a lifetime of struggles and being misunderstood for women.

This issue has been highlighted in the last few years by celebrity women including Hannah Gadsby, Daryl Hannah, British reality star Christine McGuinness and former Australian of the year Grace Tame. By talking about their adult autism diagnosis, they are helping to debunk the myth that autism is for boys and men.

Autism affects thoughts, feelings, interactions and experiences in an estimated one in 70 people. In childhood, autism is now diagnosed in three boys for every one girl (a ratio that has greatly reduced over time). Girls are often diagnosed later than boys, so miss out on opportunities for early support.

Girls who have autism but not a diagnosis grow up not understanding why they are sometimes confused in social situations. They might not be able to make friends as easily as others and can sometimes be targets for bullies. This can lead to lifelong feelings of failure and thinking they have character defects - or being told they do.

These experiences growing up can lead to or interact with post-traumatic stress symptoms in adulthood.
Girls get diagnosed (and misdiagnosed) with other things
Girls who don't get diagnosed tend not to have readily observable co-occurring difficulties, such as hyperactivity. But many girls and women receive other (sometimes incorrect) diagnoses instead of, or before, an autism diagnosis.

Our recent case study provides reflections from our perspectives as a psychologist (Tamara) and a late-diagnosed autistic woman (Carol). In the discussion, Carol describes her confusion and challenges growing up, and how they resurfaced following traumatic experiences as an adult.

There is a long-standing bias in the world of mental health to view some symptoms as the domain of males, such as aggressive and externalising symptoms, while internalising symptoms like anxiety are seen as the domain of females.

Clinical observations reveal many women who receive their autism diagnosis in adulthood have had various other diagnoses including anxiety disorders, depression and mood disorders, borderline personality disorder, obsessive compulsive disorder and eating disorders. Where the underlying cause is likely autism, treatments and support need to be tailored to be effective.

All the autism discourse this week keeps reminding me of this Hannah Gadsby quote & honestly nothing else has ever described my brain so perfectly. 👀 pic.twitter.com/2RuY0uQxOh
- Marie Morgan-Jones 🇺🇦 (@M_MorganJones) January 27, 2022

Undercover autism
Research suggests girls quickly learn to copy others, which has the effect of " masking " or "camouflaging" their difficulties. They might practise making facial expressions in the mirror so they can be ready to make their expressions match upcoming social situations; they may copy other girls to learn how to position their bodies.

They might have an array of scripts to say in different situations, especially when there is a risk of having to engage in "small talk." They use rule-based approaches rather than intuitively responding in the moment.

Their special interests might be more "acceptable" than those of autistic boys. Think animals, music, books, or just learning and researching, compared to videogames or trains.

Trying to be perfect, or achieve in other areas, can be another response to one's social difficulties. These strategies can result in autism not even being considered by parents, teachers and clinicians. Compared to boys, girls are observed to have fewer repetitive behaviors such as movements, narrow interests, or ritualized behavior.

'People say to me: you don't look autistic. Here's what women with autism want you to know. (Iris)'

Getting a diagnosis matters
Not picking up on social situations quickly enough can put women and girls at greater risk of traumatic experiences.

Parents and teachers need better support to identify and understand autism in girls. They may spot girls not picking up social cues or appearing a little behind their peers in some areas. These can be carefully explored. A conversation with a young person about how they navigate social situations can be revealing. Confusion or a rule-based approach may be quickly apparent.

Autistic girls grow into women who may have a very direct style of communication and not pick up on the subtleties of office politics. This can result in them receiving negative professional feedback and reinforce self doubts.

Clinicians too need to be better at understanding how girls and women with autism might get missed. Thinking beyond binary notions of gender is also important - there is more gender diversity in autistic people. Exploring the presentation of non-binary and gender fluid people with autism is an emerging field that could shed further light on autistic presentations.
Four ways testing should change
From an autistic woman's perspective, the diagnostic assessments need rethinking:

they should consider autistic strengths and not focus solely on deficits and impairments. Sometimes autism isn't considered because of the presence of strengths

they should incorporate the common lived experiences of autistic women. These have now been well-documented by autistic women, many with successful careers and yet areas of difficulty

the differences between the presentation of autism in females and males should be reflected in the diagnostic criteria

autistic people should be included in the design and content of diagnostic tests.

Tamara May and Carol A. Adams

Tamara May is a psychologist and senior research fellow at Monash University. Her research interests include advancing knowledge about autism, attention deficit hyperactivity disorder, other neurodevelopmental disorders and mental health problems including complex trauma and borderline personality disorder. Carol A. Adams is professor of accounting at Durham University Business School in the UK and Swinburne Business School in Melbourne, Australia. She is also a board member at Statewide Autistic Services in Victoria, Australia.
View all posts byTamara May and Carol A. Adams

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Understanding the 'Undercover Autism' of Many Women and Girls - Social Science Space

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Ed. - April 2, 2022 is World Autism Awareness Day.] Being autistic, but not diagnosed, can lead to a lifetime of struggles and being misunderstood for women. This issue has been highlighted in the last few years by celebrity women including Hannah Gadsby, Daryl Hannah, British reality star Christine McGuinness and former Australian of the year Grace Tame.

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Caroline Kassee 1,2 na1,

Stephanie Babinski orcid.org/0000-0001-5623-8542 2,3 na1,

Ami Tint orcid.org/0000-0003-1264-4455 1,4,

Yona Lunsky orcid.org/0000-0002-1866-9728 4,5,

Hilary K. Brown orcid.org/0000-0002-8690-5841 2,6,

Stephanie H. Ameis orcid.org/0000-0002-7282-6077 1,4,5,7,

Peter Szatmari 1,5,7,

Meng-Chuan Lai orcid.org/0000-0002-9593-5508 1,4,5,7,8,9,10 na2 &

...

Gillian Einstein orcid.org/0000-0002-0770-5471 2,8,11,12 na2

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Molecular Autism 11, Article number: 84 (2020) Cite this article

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Abstract

Background

There is a growing recognition of sex and gender influences in autism. Increasingly, studies include comparisons between sexes or genders, but few have focused on clarifying the characteristics of autistic girls'/women's physical health.

Methods

A scoping review was conducted to determine what is currently known about the physical health of autistic girls/women. We screened 1112 unique articles, with 40 studies meeting the inclusion criteria. We used a convergent iterative process to synthesize this content into broad thematic areas.

Results

Autistic girls/women experience more overall physical health challenges compared to non-autistic girls/women and to autistic boys/men. Emerging evidence suggests increased prevalence of epilepsy in autistic girls/women compared to non-autistic girls/women and to autistic boys/men. The literature also suggests increased endocrine and reproductive health conditions in autistic girls/women compared to non-autistic girls/women. Findings regarding gastrointestinal, metabolic, nutritional, and immune-related conditions are preliminary and inconsistent.

Limitations

The literature has substantial heterogeneity in how physical health conditions were assessed and reported. Further, our explicit focus on physical health may have constrained the ability to examine interactions between mental and physical health. The widely differing research aims and methodologies make it difficult to reach definitive conclusions. Nevertheless, in keeping with the goals of a scoping review, we were able to identify key themes to guide future research.

Conclusions

The emerging literature suggests that autistic girls/women have heightened rates of physical health challenges compared to non-autistic girls/women and to autistic boys/men. Clinicians should seek to provide holistic care that includes a focus on physical health and develop a women's health lens when providing clinical care to autistic girls/women.

Background

Autism spectrum disorder (hereafter autism) is a neurodevelopmental condition characterized by early-onset social communication difficulties and repetitive, stereotyped behaviors. The estimated prevalence rate of autism is approximately 1% worldwide [ 1], with a higher prevalence among males than females [ 2, 3]. The widely reported male-to-female ratio for autism prevalence is 4-5:1 but large-scale, population-based epidemiological studies suggest that the ratio is in fact lower, at 3-4:1 [ 4]. The higher rates of autism among males reflect sex and gender differences in the likelihood of developing autism and potential gender biases in clinical assessment and diagnoses [ 5, 6].

Autism is highly associated with co-occurring health conditions [ 7]. It is hypothesized that this likely reflects complex epigenetic and pleiotropic gene-environment interactions and behavioral mechanisms [ 3, 8], which complicate the clinical presentation of autism. Co-occurring health conditions in autism are associated with varied developmental trajectories [ 9, 10] and unique social and psychological challenges experienced throughout the life course [ 3]. In order to improve our knowledge of sex-based and gender-based differences in autism [ 11], it is critical to better understand the prevalence and characteristics of co-occurring conditions in autistic girls and women.

Most research on co-occurring conditions in autistic girls/women relative to boys/men has focused on psychiatric conditions, suggesting increased internalizing psychopathology in autistic girls/women compared to in boys/men [ 12, 13, 14]. The latest meta-analysis on co-occurring psychiatric diagnoses in autistic people shows that studies with a higher proportion of girls/women tend to find higher rates of depression [ 15]. However, less attention has been paid to sex and gender differences in autism outside of the domain of mental health, especially regarding physical health. (Note that we define physical health in this context to encompass non-mental health conditions within the broad category of medical disorders or problems.) Accurate and in-depth information in this domain, especially concerning autistic girls/women, is essential to the provision of comprehensive and sex- and gender-sensitive health care and is important for elucidating clinically useful subgroups within the autism spectrum. In view of this, we conducted a scoping review of the literature, focused on the extent and range of research pertaining to the physical health of autistic girls/women. Two research questions guided our review: (1) What do we know about the physical health of autistic girls/women; and (2) How specific are these physical health concerns to autistic girls/women, as compared to autistic boys/men, and to non-autistic girls/women?

Methods

We conducted a scoping review of the literature following the methodological framework outlined by Arksey and O'Malley [ 16] and recent Preferred Reporting Items for Systematic Reviews and Meta-analyses standards for scoping reviews (PRISMA-ScR) [ 17]. Scoping reviews allow a broad survey of the literature in a particular area to determine existing themes and areas of inquiry that are under-researched. Scoping reviews typically do not conduct an assessment of bias in the research nor do they appraise or generate effect sizes [ 16]. We considered a scoping review to be the most appropriate approach for examining emerging evidence concerning the physical health of autistic girls/women since it was unclear what specific questions should be posed in this area given the limitations of current literature. Therefore, our purposes were to summarize the extent and range of research pertaining to physical health in autistic girls/women and to identify evidence gaps. In this way, we surveyed all of the literature with respect to physical health in autistic girls/women, without restrictions based on study design or comparison groups. Furthermore, as this literature often-unfortunately-conflates gender and sex, it is difficult to tease apart their respective effects. Hence, in interpreting the findings, references to "girls/women" were assumed to refer to biological, cis-gender females and references to "gender" were read very carefully to determine whether they referred to biological sex or gender identity.

We systematically searched the following databases according to PRISMA standards [ 18]: CINAHL, PubMed, EMBASE, PsycINFO, Scopus, and Web of Science (see Additional file 1: Appendix: Search Strategy). As this was a scoping review aimed at assessing general themes in the published literature rather than analyzing specific types of data, grey literature was not included in the searches. Autism and co-occurring physical health conditions were defined using a combination of keywords and controlled vocabulary applicable to each database (see Additional file 1: Appendix: Search Strategy). We purposely kept the definition of "physical health" as broad as possible, in order to gather a wide range of studies and gain a thorough coverage of the published literature with respect to non-mental health-related conditions. There was no publication type or date restriction at this stage, but the search results were limited to human studies and journal articles written in English. The final database search was performed on December 5, 2019, and references were managed using Mendeley ( https://www.mendeley.com/).

A systematic selection process was used to determine the final articles included in this review. After duplicates were removed, two authors (CK and SB) screened titles and abstracts with support from senior authors (M-CL and GE), using broad criteria to allow for the inclusion of any potentially relevant study for further evaluation. Full-text articles were evaluated for inclusion by CK and SB. The pool of studies identified based on screening titles, abstracts, and consultations with senior authors determined the inclusion and exclusion criteria. At this stage, articles were included if they: (1) reported on co-occurring physical health conditions in people with a diagnosis of autism as defined by the DSM-IV, DSM-5, or ICD-10 criteria, or had direct relevance to the physical health of autistic girls/women; (2) included a clearly articulated sex-specific or gender-specific description or analysis of these conditions; (3) studied biological females only, or if the total female autism sample size was ≥ 15 and with at least one-eighth (12.5%) of the total autism sample being biologically female (to ensure that included studies had a sufficient number of girls/women to derive sex-specific or gender-specific information); (4) reported original, English-language research articles or reviews published in peer-reviewed scientific journals; and (5) in the case of review articles, used systematic search methods and included sex-specific or gender-specific analyses and interpretation. Articles were excluded if they were: (1) review articles using non-systematic search methodology; (2) opinion pieces; (3) editorials; (4) case reports; or (5) conference papers. Final decisions on which articles to include were made in discussion within the research team. Articles were grouped by main topic area and study design for organizational clarity. Data were extracted as shown in Tables 1 and 2, with relevant findings summarized in the Results section. We used a convergent iterative process involving multistage revisions among all authors to synthesize included studies into a series of themes that broadly summarize key findings in the literature.

Table 1 Overview of included studies (n = 40)

Table 2 Summary of included studies (n = 40 unique studies, by themes and then by comparison groups)

Results

Search results

We screened a total of 1112 unique citations and reviewed the full text of 201 articles, with 40 studies ultimately meeting the inclusion criteria (Fig. 1). The majority of the studies were from North America and Europe/UK, cross-sectional, and about general prevalence rates for health conditions in autistic individuals (Table 1). The articles included descriptive studies of autistic girls/women only, as well as studies of autistic individuals of all ages and functional levels that compared autistic girls/women to autistic boys/men and/or non-autistic girls/women (Table 2).

PRISMA flow diagram for study selection

Three major themes on the physical health status of autistic girls/women emerged from the existing literature: (1) Autistic girls/women experience more overall physical health conditions than autistic boys/men and non-autistic girls/women; (2) Epilepsy has been most commonly researched and seems more common in autistic girls/women compared to autistic boys/men and non-autistic girls/women; and (3) Autistic girls/women may experience more menstruation-related complications, endocrine and reproductive health conditions compared to non-autistic girls/women. Finally, studies that met the inclusion criteria but that did not align with the three major themes are described in a fourth section, Miscellaneous Emerging Findings. Details of sample characteristics, methodology, and statistics are provided in Table 2.

Summary of key themes

Theme 1: Overall Physical Health Status

Thirteen out of the 40 included studies focused on the overall physical health status of autistic girls/women [ 19, 20, 21, 22, 23, 24, 25, 26, 27, 28, 29, 30, 31], with respect to multiple conditions across body systems.

Autistic girls/women compared to autistic boys/men

Two studies further examined sex/gender as a predictor of physical quality of life and overall health status in 370 [ 25] and 255 [ 26] autistic adults. Female sex/gender was a significant predictor of lower physical health-related quality of life [ 25] and lower overall health [ 26]. Finally, two literature reviews on the physical health status of autistic adults regardless of sex/gender [ 27] and sex differences in developmental and medical endophenotypes in autism [ 28], respectively, reported there was insufficient research to reach consensus about sex/gender differences.

Autistic girls/women compared to non-autistic girls/women

Theme 2: Epilepsy and Related Neurological Conditions

Eleven out of the 40 included studies specifically focused on, or included, epilepsy when examining sex/gender differences in neurological conditions in autistic individuals [ 22, 30, 31, 32, 33, 34, 35, 36, 37, 38, 39].

Autistic girls/women compared to autistic boys/men

In addition, two studies specifically explored neurological profiles including seizure disorders in autistic children from community-based samples [ 36, 37]. One study of 883 autistic children found seizure disorders to be more frequent among autistic boys born preterm vs. those born term, while no preterm-term differences were found in autistic girls [ 36]. The other study on 663 autistic children found higher prevalence of neurological anomalies (e.g., microcephaly, minor neurological-musculoskeletal deficits) in autistic girls than in autistic boys, but no sex differences in seizures [ 37].

Autistic girls/women compared to non-autistic girls/women

Four studies reported risks of epilepsy in autistic girls/women against non-autistic girls/women [ 30, 31, 38, 39]. A population-based registry study of autistic adults found that autistic women were at significantly higher risks of having epilepsy than non-autistic women [ 30]. In another registry study on physical health in autistic seniors, epilepsy shows the largest OR among all conditions in autistic women compared to non-autistic women [ 31]. Similarly, two additional community-based studies reported elevated rates of epilepsy in autistic women compared to non-autistic women in a sample of 54 autistic women and 183 non-autistic women [ 38] and in another sample of 415 autistic women and 415 non-autistic women [ 39].

Theme 3: Endocrine and Reproductive Health Conditions

Ten out of the 40 included studies focused on endocrine and reproductive health conditions in autistic girls/women only [ 40, 41] or in comparison with non-autistic girls/women [ 30, 31, 38, 39, 42, 43, 44, 45].

Studies with no comparison group

Two community-based studies reported menstruation-related health challenges in autistic girls/women [ 40, 41]. One online survey with 124 autistic girls/women found > 90% of them experienced dysmenorrhea and premenstrual syndrome (PMS), while one-third endorsed increased autism-associated difficulties during the menstrual cycle [ 40]. The other study on the effects of menarche on the sensory features of autism in 53 autistic girls reported that those who reached menarche had lower sensory interests and multisensory processing than those who had not yet reached menarche [ 41].

Autistic girls/women compared to non-autistic girls/women

Miscellaneous emerging findings

Thirteen out of the 40 studies [ 46, 47, 48, 49, 50, 51, 52, 53, 54, 55, 56, 57, 58] were in emerging areas of research that did not align well with the three major themes; they also provided relatively inconsistent findings. All 13 studies offered information regarding autistic girls/women in comparison with autistic boys/men.

Additional neurological conditions

Three studies reported on neurological conditions beyond epilepsy in autism [ 46, 47, 48], with two examining neurological conditions as a broad category [ 46, 47] and the third, cerebral palsy [ 48]. One community-based study of 91 autistic children found that autistic girls had higher rates of neurological conditions than autistic boys [ 46]. A surveillance registry-based study found that in 6379 8-year-old autistic children across eight US sites, both autistic girls and boys showed stable rates of change in the prevalence of neurological conditions over 2002-2010 [ 47]. The final study, in a nation-wide cohort of 4180 autistic individuals (with ICD-10 Asperger's syndrome), found increased prevalence of cerebral palsy in autistic individuals compared to the general population, without significant differences between autistic girls/women and boys/men [ 48].

Obesity and overweight

Two studies focused on obesity and overweight (via body mass index) [ 49, 50]. One registry-based study including 2976 autistic children and youth found that autistic girls were less likely to be obese compared to autistic boys, but they were equally likely to be overweight [ 49]. The other study, a community-based study of 78 autistic children, adolescents and adults, found that being overweight, as well as being obese, was more common in autistic men than in autistic women but with no differences found between autistic boys and autistic girls [ 50].

Gastrointestinal, metabolic, or nutritional problems

Four studies focused on gastrointestinal, metabolic, or nutritional conditions, comparing autistic girls/women and autistic boys/men [ 51, 52, 53, 54]. One community-based study examined the prevalence of gastrointestinal problems in 169 autistic children, reporting that autistic girls had a greater likelihood of gastrointestinal problems than autistic boys and that more gastrointestinal symptoms were correlated with more severe core autistic symptoms [ 51]. Two were systematic reviews and meta-analyses: One, on peripheral iron levels and iron deficiency (1603 autistic children pooled from 25 studies across 3 analyses), found no sex/gender differences with respect to iron levels in autistic children [ 52]; the other, on mitochondrial dysfunction (648 autistic children and youth pooled from 65 studies), found a higher proportion of girls/women in the group of those with autism plus mitochondrial disease compared to those with autism only [ 53]. The final study, a community-based study on vitamins A and D deficiencies in 332 autistic children, reported that autistic girls had lower serum 25-OH vitamin D than autistic boys [ 54].

Immune profile

Three studies focused on sex-specific immunological features in autism [ 55, 56, 57]. Cytokine levels were measured in two studies of autistic children and adolescents from registry- and hospital-based cohorts: one with 144 (27 cytokines measured) [ 55] and the other, 87 (11 cytokines measured) [ 56] autistic individuals. Both studies found differences in the cytokine profiles of autistic girls compared to autistic boys but on different cytokines [ 55, 56]. A meta-analysis of 38 studies on 1393 autistic individuals regarding circulating pro-inflammatory cytokines also found sex/gender differences in cytokine patterns [ 57]. Altogether, these preliminary findings implicate potential sex/gender differences in immune profiles related to autism, though with inconsistent cytokine involvement.

Autism symptoms associated with physical health

Lastly, one meta-analysis examined sex/gender differences in 254 autistic adults regarding self-reported autistic characteristics, which included sensorimotor symptoms, some of which related to physical health, such as sensitivity to pain. Results revealed more severe sensorimotor symptoms in autistic women than in autistic men [ 58].

Discussion

The purpose of this scoping review was to explore what is known about co-occurring physical health conditions in autistic girls/women. Out of the 201 full-text articles we reviewed, only 40 met our inclusion criteria, mainly due to the paucity of reporting on sex or gender differences among populations with autism and the low percentages of autistic girls/women included in the current literature. There is a pressing need for more research that includes large numbers of autistic girls/women in order to better understand their physical health. This should be prioritized in order to advance the best clinical care for autistic individuals [ 11].

Findings in Themes 1 and 2 regarding differences between autistic girls/women and autistic boys/men need to be interpreted in light of the general pattern of case ascertainment in autism research so far, and the complexity associated with sex/gender-related differences in comorbidity pattern (e.g., association with intellectual disability) and etiological load. With regard to ascertainment bias, some have suggested that the observed association between autism and epilepsy is largely driven by co-occurring intellectual disability [ 60], which is in turn confounded by the greater proportion of autistic girls/women with lower cognitive abilities [ 61] and shared neurobiological bases between autism and neurological anomalies [ 62]. Indeed, for a long time, girls/women who were clinically diagnosed with autism, and hence included in the registry and hospital-based datasets in the reviewed studies, tended to be those with lower IQ, early-recognized and more "classic" symptoms of autism [ 63]-those who tend to carry heightened etiological risk factors for neurodevelopmental and physical health issues. Meanwhile, sex- and gender-related barriers to girls/women receiving an autism diagnosis [ 2, 4, 11] may result in autistic girls/women without evident intellectual disability or "classic" symptoms of autism being under-represented in the current literature. Therefore, the observed differences between autistic boys/men and autistic girls/women in overall physical health status and epilepsy are likely confounded by sex- and gender-based ascertainment bias. It is also likely that the later recognition of autism in some girls/women has resulted in inadequate health care [ 64, 65, 66], further contributing to poorer overall health status. However, it remains unclear if the same pattern of male-female differences holds in autistic individuals who are so far under-recognized and undiagnosed.

At the same time, these observed sex/gender differences could be associated with variations in etiological load. At a group level, autistic girls/women tend to carry more de novo protein-truncating genetic variants likely causal to autism compared to autistic boys/men [ 67]. Given the pleiotropic effects of many autism-related genes, autistic individuals who carry these variants are more likely to experience other neurodevelopmental (e.g., intellectual disability) and physical health challenges (e.g., epilepsy, other neurological anomalies, cardiovascular defects, obesity) [ 8]. This means that the observed sex/gender differences may further reflect, and are confounded by, higher co-occurrence of neurodevelopmental disabilities and stronger de novo genetic etiological load in diagnosed autistic girls/women compared to autistic boys/men.

Finally, there is increasing evidence that gastrointestinal [ 81] and metabolic/nutritional conditions [ 82], including obesity and diabetes [ 83], have a high frequency of co-occurrence in autistic individuals. These conditions could involve shared etiological mechanisms with autism as well as with life experiences (e.g., lifestyle, health care support, medication use) of autistic people. The emerging but preliminary findings regarding sex/gender differences in these domains suggest that they may be especially important to the physical health of autistic girls/women. Elucidating associated sex/gender-related mechanisms requires more in-depth research.

Clinical Implications (also see Fig. 2)

Exemplary findings and clinical implications. Prevalence rates of exemplary physical health conditions were

The finding that autistic girls/women experience more overall physical health challenges than non-autistic girls/women and autistic boys/men is of immediate clinical relevance. Improving physical health is integral to the care of all autistic individuals [ 84, 85]. Frontline and primary care clinicians should regularly monitor and address health care needs for autistic children, youth, and adults alike [ 86, 87], especially for female individuals [ 88]. For autistic girls/women, this scoping review provides indication for clinicians to particularly attend to the risks of epilepsy, endocrine and reproductive health issues, as well as other neurological, gastrointestinal, metabolic, nutritional, and immune conditions, among various physical health issues. To achieve holistic support, developing a women's health lens when providing clinical care to autistic girls/women is essential and will significantly enrich sex- and gender-informed health care for all autistic people. Sex- and gender-informed health promotion strategies need to be applied across the life span. Conversely, improved attention to physical health in girls/women who also experience difficulties in social communication, restricted/stereotyped behaviors and sensory issues might also facilitate the identification of later recognized autism in girls/women [ 89].

Another key consideration is the interplay between physical and mental health. Autistic people are prone to experiencing mental health challenges (which we did not review here) [ 15]. However, many psychiatric medications for such challenges have side effects that are more commonly experienced in autistic compared to non-autistic individuals [ 84, 90, 91], contributing to heightened risk to physical health (e.g., weight gain and endocrine problems related to psychotropic medications). These findings have not yet been sufficiently studied in a sex-/gender-specific manner. Meanwhile, physical health challenges (e.g., epilepsy, hormonal dysregulation) can have detrimental impacts on mental health and affect mood and behavior. Such complexity and interplay may result in the high clinical needs and multiple service use that are common in the autism population, particularly among girls/women [ 64, 65, 66]. Many of these specific physical health challenges are treatable with the proviso that clinical trials need to disaggregate their data by sex and gender, which is unfortunately still insufficiently done for trials involving autistic people.

Timely diagnosis and treatment will enhance well-being associated with both physical and mental health of autistic individuals across the life span. This review has revealed that autistic girls/women are a population with unique health needs. Therefore, it requires us to develop comprehensive services that integrate developmental, mental, and physical health for autistic girls/women.

Limitations

There are several limitations to consider in interpreting our findings. First, it is possible that we were unable to identify all studies relevant to our guiding questions due to the heterogeneity in how physical health conditions were assessed and reported in the literature. Nevertheless, based on the principles of a scoping review, we have identified potential areas in the literature that warrant future investigation and areas with insufficient information as yet to make firm conclusions. Second, the decision to focus on physical health, thus excluding studies only focusing on psychiatric co-occurring conditions, meant that we could not explore how mental health and physical health are intertwined in autistic people, particularly in girls/women. Finally, our scoping review demonstrates that understandings of the physical health of autistic girls/women are still emerging. The limited number of studies in each theme, and their varying quality and research methodologies, makes it difficult to reach definitive conclusions.

However, several lessons about significant gaps in the clinical and research literature about autism can be learned from our review to inform future research directions. There is a lack of consistent, basic epidemiological information on the prevalence and incidence for co-occurring physical health conditions in the autism population by sex and, in particular, by gender. Reliable and valid measurement tools for physical health in autistic individuals need to be further developed. Additionally, there are insufficient longitudinal studies to chart the emergence of co-occurring conditions and randomized control trials to assess treatment for these conditions. There are also insufficient biological studies on the mechanisms of the development of physical health challenges in autism by sex and by gender. Further, there is significant underrepresentation of autistic girls/women in most studies, and only a small minority of studies are equipped to or have formally examined and reported sex/gender differences in their primary analyses. These highlight the ignorance about how sex and gender influence autism, perhaps due to a male-biased lens. The relative lack of awareness about women's health and female experiences in the scientific and clinical knowledge about physical health and autism leaves girls/women diagnosed with autism at distinct disadvantages. Targeted research on autistic girls/women is clearly needed. Future studies on autism should be designed to achieve sex/gender equity by ensuring a male/female ratio closer to the general population rate (i.e., ~ 3:1) [ 4]. For research focusing on delineating sex-related or gender-related effects, balanced inclusion of participants with diverse sexes and genders should be targeted [ 2, 92]. Finally, it is extremely rare in the current empirical literature that sex (biological attributes) and gender (psychological, social, and cultural attributes) are defined and examined separately and in valid ways. These gaps need to be addressed in future research, alongside a clarification of sources of demographic, clinical, and etiological heterogeneity such as age, pubertal stage, developmental trajectories, intellectual functioning, and genetic background. Such clarification is fundamental for future studies to generate etiological and mechanistic insights by studying co-occurring physical health conditions in autism using sex- and gender-informed frameworks.

Conclusions

To our knowledge, this is the first scoping review on physical health in autistic girls/women. Emerging themes suggest that autistic girls/women tend to have heightened rates of a variety of co-occurring physical health challenges compared to autistic boys/men and non-autistic girls/women. Clinicians should provide holistic care that integrates not only developmental and mental health, but also physical health. Future studies need to include sufficient numbers of autistic girls/women to achieve adequate power, attend to physical health and the intertwined nature of developmental, mental, and physical health, and use sex- and gender-informed lenses.

Availability of data and materials

Abbreviations

DSM:

Diagnostic and Statistical Manual of Mental Disorders

ICD:

International Classification of Diseases

OR:

Odds ratio

PRISMA:

Preferred Reporting Items for Systematic Reviews and Meta-analyses

RR:

Risk ratio

SD:

Standard deviation

SIR:

Standardized incidence ratio

References

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Funding

M-CL is supported by a Canadian Institutes of Health Research (CIHR) Sex and Gender Science Chair (GSB 171373), the Innovation Fund of the Alternative Funding Plan for the Academic Health Sciences Centres of Ontario (CAM-18-004), the Ontario Brain Institute via the Province of Ontario Neurodevelopmental Disorders (POND) Network (IDS-I l-02), and Women's Xchange. M-CL and SHA are both supported by the O'Brien Scholars Program within the Child and Youth Mental Health Collaborative at the Centre for Addiction and Mental Health and The Hospital for Sick Children, Toronto, the Academic Scholars Award from the Department of Psychiatry, University of Toronto, and the Slaight Family Child and Youth Mental Health Innovation Fund via the Centre for Addiction and Mental Health Foundation. SHA is supported by funding from the US National Institutes of Mental Health, CIHR, and the Cundill Centre for Child and Youth Depression at the Centre for Addiction and Mental Health. AT is supported by the CIHR Post-doctoral Fellowship and the Azrieli Adult Neurodevelopmental Centre Fellowship. HKB is supported by a Tier 2 Canada Research Chair in Disability & Reproductive Health, CIHR, and the US National Institutes of Health. YL is supported by CIHR, the US National Institutes of Health, and the Azrieli Foundation. SB is supported by the Ontario Graduate Scholarship and the Department of Sociology, University of Toronto. GE is supported by the Wilfred and Joyce Posluns Chair in Women's Brain Health and Aging, CIHR, Ontario Brain Institute, Alzheimer's Society Canada, and Women's Brain Health Initiative. The funders have no role in the design of the study, the collection, analysis, and interpretation of data, and writing of the manuscript.

Author information

Author notes

1. Caroline Kassee and Stephanie Babinski are equal contribution joint first authors

2. Meng-Chuan Lai and Gillian Einstein are equal contribution joint senior authors

Authors and Affiliations

1. The Margaret and Wallace McCain Centre for Child, Youth and Family Mental Health, Centre for Addiction and Mental Health, 80 Workman Way, Toronto, ON, M6J 1H4, Canada

Caroline Kassee, Ami Tint, Stephanie H. Ameis, Peter Szatmari & Meng-Chuan Lai

2. Dalla Lana School of Public Health, University of Toronto, Toronto, Canada

Caroline Kassee, Stephanie Babinski, Hilary K. Brown & Gillian Einstein

3. Department of Sociology, University of Toronto, Toronto, Canada

Stephanie Babinski

4. Azrieli Adult Neurodevelopmental Centre, Centre for Addiction and Mental Health, Toronto, Canada

Ami Tint, Yona Lunsky, Stephanie H. Ameis & Meng-Chuan Lai

5. Department of Psychiatry, Faculty of Medicine, University of Toronto, Toronto, Canada

Yona Lunsky, Stephanie H. Ameis, Peter Szatmari & Meng-Chuan Lai

6. Department of Health and Society, University of Toronto Scarborough, Toronto, Canada

Hilary K. Brown

7. Department of Psychiatry, The Hospital for Sick Children, Toronto, Canada

Stephanie H. Ameis, Peter Szatmari & Meng-Chuan Lai

8. Department of Psychology, University of Toronto, Toronto, Canada

Meng-Chuan Lai & Gillian Einstein

9. Autism Research Centre, Department of Psychiatry, University of Cambridge, Cambridge, UK

Meng-Chuan Lai

10. Department of Psychiatry, National Taiwan University Hospital and College of Medicine, Taipei, Taiwan

Meng-Chuan Lai

11. Tema Genus, Linköping University, Linköping, Sweden

Gillian Einstein

12. Rotman Research Institute, Baycrest Hospital, Toronto, Canada

Gillian Einstein

Contributions

M-CL, GE, and SB conceived and planned the study. CK and SB carried out the literature search, screening, extraction, and summary of data. M-CL and GE supervised the study and contributed to literature screening and summary of findings. CK, SB, M-CL, and GE drafted the manuscript. AT, YL, HKB, SHA, and PS contributed to the interpretation of findings and writing of the manuscript. M-CL and SHA obtained funding support for the study. CK and SB contributed equally as first authors. M-CL and GE contributed equally as senior authors. All authors read and approved the final manuscript.

Corresponding author

Correspondence to Meng-Chuan Lai.

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Supplementary information

Appendix: Search Strategy.

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Kassee, C., Babinski, S., Tint, A. et al. Physical health of autistic girls and women: a scoping review. Molecular Autism 11, 84 (2020). https://doi.org/10.1186/s13229-020-00380-z
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DOI: https://doi.org/10.1186/s13229-020-00380-z

Keywords

Autism

Physical health

Sex differences

Gender

Girls

Women

Scoping review

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Physical health of autistic girls and women: a scoping review - Molecular Autism

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Background There is a growing recognition of sex and gender influences in autism. Increasingly, studies include comparisons between sexes or genders, but few have focused on clarifying the characteristics of autistic girls'/women's physical health. Methods A scoping review was conducted to determine what is currently known about the physical health of autistic girls/women.

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Dr Tony Attwood  - Good Mental Health for Autistic Girls and Women (taken from full video)

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Happy International Womens Day 2022! We asked our autistic female colleagues to tell us about an autistic woman or gender non-conforming autistic person they admire.

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Book Recommendations - The Toby Henderson Trust

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Books recommended by the Toby Henderson Team

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LGS ASD Outreach referral form 2019 Effective-Teaching-Practices-for-Students-with-ASD Top-Tips-for-ASD-Students Empowering-Teenagers-with-ASD-to-understand-the-4-challenges Top-Tips-for-transition-to-Secondary-School Key-Advice-for-Girls-with-ASC ASD-Advice-Teenage-Girls-and-Puberty-Sheet General note about PDA https://www.autismparentingmagazine.com/pathological-demand-avoidance-autism/
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Positive PDA booklet Surrey Cygnet Programme For Parents Carers AET Forthcoming Dates Sept 2018 to July 2019
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General
http://www.autism.org.uk/ The National Autistic Society

https://www.autism.org.uk/directory.aspx Autism Services Directory for services and

support for people on the Autistic spectrum, their families and people who work with them.
https://www.autistica.org.uk/ https://www.ambitiousaboutautism.org.uk/ https://specialneedsjungle.com/
'Neurotribes' by Steve Silberman http://stevesilberman.com/

'Thinking in Pictures' and 'The Autistic Brain' by Temple Grandin www.templegrandin.com
Inspiring 'TED' Talks: https://www.ted.com/talks/steve_silberman_the_forgotten_history_of_autism https://www.ted.com/talks/temple_grandin_the_world_needs_all_kinds_of_minds
Research: https://spectrumnews.org/author/williammandy/

Sibling support: https://www.sibs.org.uk/
Surrey
www.surreylocaloffer.org.uk The online hub for 0-25 year olds with special educational needs or a disability.

Find services and support for yourself or someone you care for with SEND.

Access a wide range of information and advice about SEND.

Talk to other families online and share SEND experiences.

Talk to the Local Offer team online or by phone about your SEND queries.

http://www.nassurreybranch.org/home.html
Tom Moore runs the Surrey Autism Partnership board, which is the closest thing to outreach/advice service for the post 16s

http://www.surreypb.org.uk/modx/welcome-to-the-surrey-autism-partnership-board.html Thomas.moore@surreycc.gov.uk
Suggested Teenage/Parent Autism Resources and Booklist http://the-art-of-autism.com/understanding-the-spectrum-a-comic-strip-explanation
https://www.youtube.com/watch?v=7JdCY-cdgkI cartoon explanation of ASD
https://www.youtube.com/user/AspieWorld1 http://youth.anxietybc.com/
https://kooth.com/ - XenZone is a provider of online mental health services for children, young people and adults. Kooth, from XenZone, is an online counselling and emotional well-being platform for children and young people, accessible through mobile, tablet and desktop and free at the point of use.

For more information about XenZone, please visit XENZONE.COM. If you're a parent looking for more information about Kooth, please email PARENTS@XENZONE.COM

The Girl with the Curly Hair books: 'Asperger's Syndrome in 13-16year olds'; 'Asperger's Syndrome and https://thegirlwiththecurlyhair.co.uk/

https://en-gb.facebook.com/pg/TheGirlWithTheCurlyHair/about/?ref=page_internal - Monitored social media website.

http://martinantony.com/publications/ download publications for free, eg: overcome fear of animals

http://astraldrivejunior.ednet.ns.ca/worksheets.pdf materials and worksheets, 'Anxiety' by Paul Stallard
Books
Can I tell you about Asperger Syndrome? Jude Welton

Kids with Autistic Spectrum Disorders, Elizabeth Verdick and Elizabeth Reeve, MD

Snivel & Shriek Guides: Transition, Wellbeing and Learning. http://www.snivelandshriek.com/

The ASD Workbook, Understanding your Autistic Spectrum Disorder, Penny Kershaw

With The Light: Raising an Autistic Child, Keiko Tobe

The Asperger Teen's Toolkit, Francis Musgrave

Freaks, Geeks and Asperger Syndrome, Luke Jackson

Sex, Drugs and Asperger's Syndrome, Luke Jackson

How to Start, Carry On and End Conversations, Paul Jordan

The Reason I Jump, Naoki Higashida

The Whole-Brain Child (and Workbook), Dr Daniel Siegel and Dr Tina Bryson

The Asperkid's Secret Book of Social Rules, Jennifer Cook O'Toole - List of do's and don'ts from Page 27

Revealing the Hidden Social Code, Marie Howley and Eileen Arnold

Can I tell you about Anxiety? Lucy Willets and Polly Waite

Little Book series: The Little Book of Exam Skills Kate Brookes; The Little Book of Exam Calm, Anita Naik

Starving the Anxiety Gremlin, Kate Collins-Donnelly

Starving the Stress Gremlin, Kate Collins-Donnelly

Starving the Anger Gremlin, Kate Collins-Donnelly

'Live Out Loud' and 'It's all in the mind, Don't Sweat the small stuff', Marilynn Tucknot, publisher Koa Ltd

The Growing Up Book for Boys by Davida Hartman
Girl specific
Girls with Autism Channel 4 clip: https://www.channel4.com/news/girls-affected-by-autism 8.16mins
http://www.nasen.org.uk/resources/resources.girls-and-autism-flying-under-the-radar.html
https://limpsfieldgrange.co.uk/ Film clips and ITV Documentary, and our book, 'M is for Autism' and 'M in the Middle'

Girls Growing Up on the Autistic Spectrum Shana by Nichols with

Gina Marie Moravcik and Samara Pulver Tetenbaum.

The Growing Up Guide for Girls by Davida Hartman
http://aspie-girl.blogspot.co.uk/ https://www.bbc.co.uk/news/uk-england-devon-45422985
'Girl in a mask' draws out school fears
www.bbc.co.uk
https://network.autism.org.uk/good-practice/case-studies/autism-and-mental-health
Jessi C'Artoon has autism and draws to express her anxiety over moving from primary to secondary school.

Purple Ella - https://www.youtube.com/user/purplemumify
https://network.autism.org.uk/knowledge/insight-opinion/energy-accounting-interview-maja-toudal
Autism and mental health
Autism Apps
Ella Tabb, a blogger, YouTuber and autism speaker, discusses her mental health difficulties prior to her autism diagnoses in her 30s. She explores how unmasking and strategies such as mindfulness have helped to improve her mental health.

Energy accounting: an interview with Maja Toudal

https://www.autismspeaks.org/autism-apps Apps listed in alphabetical order, with a research rating:

Anecdotal = No specific or related scientific studies

Research = There are some related scientific studies, but no direct research support

Evidence = There is solid or specific scientific evidence that this type of App is helpful

Breathe2Relax (4.5 stars on App Store, 4.1 stars on Google Play)

Quickshift Apps. Look at the Vitallinks site, Sensory Modulation & Regulation: Regulations 1 and 2. https://www.vitallinks.net/pages/Quickshifts-Album-Descriptions.php
http://braininhand.co.uk/ Studying, Planning, Organising and Revising
https://vitallinks.com/support/documents/therapeutic-listening-app/ - download instructions

https://www.autistica.org.uk/get-involved/molehill-mountain-app - Molehill Mountain is designed to help autistic people understand more about their anxiety. The app is based on Cognitive Behaviour Therapy (CBT) approaches adapted for autistic people and developed from a paper toolkit focused on psychoeducation, created and evaluated by Professor Emily Simonoff. Molehill Mountain is co-owned by Autistica and King's College London.
www.educationoasis.com/printables/graphic-organizers/
Top Tips for Asperger Students, Rosemary Martin

The Study Skills Handbook, Stella Cottrell

www.gojimo.com - the free app to help you pass exams!

https://bubbl.us - the first 3 mind maps that you create are free
This is not an exhaustive list, but somewhere to start the journey, and supplement knowledge and skills. For more information or guidance contact: debbiewalfordoutreach@limpsfield-grange.surrey.sch.uk dihilloutreach@limpsfield-grange.surrey.sch.uk 01883 713928 Ext 120
www.quizlet.com - create flashcards. Interactive games, study modes and practice tests make learning fun!

https://getrevising.co.uk/planner - be organised and create a revision study planner

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Autism Documentary: Inside the UK’s only school for autistic girls -- What do you already know about Autism in girls and boys? What do you want to find out?

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Limpsfield Grange - state school for autistic girls

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Limpsfield Grange - state school for autistic girls

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Autism Documentary: Inside the UK’s only school for autistic girls

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A Different Way of Thinking: 30 Books About Autistic Mighty Girls

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A Different Way of Thinking: 30 Books About Autistic Mighty Girls

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Author: Kock et al (2019)

Title: Autistic women's experience of intimate relationships: the impact of an adult diagnosis

Source: Advances in Autism, 5(1):12.

Author: Kanfiszer et al (2017)

Title: 'I was just so different': The experiences of women diagnosed with an autism spectrum disorder in adulthood in relation to gender and social relationships

Source: Autism: The International Journal of Research and Practice, 21(6):9.

Author: Bargiela et al (2016)

Title: The experiences of late-diagnosed women with autism spectrum conditions: an investigation of the female autism phenotype

Source: Journal of Autism and Developmental Disorders, 46(10).

Author: Baldwin and Costley (2016)

Title: The experiences and needs of females adults with high-functioning autism spectrum disorder

Source: Autism: The International Journal of Research and Practice, 20(4):13.

Author: Wilson and Andrassy (2022)

Title: Breastfeeding experiences of autistic women

Source: MCN, American Journal of maternal Child Nursing, 47(1).

Author: Steward et al (2018)

Title: "Life is much more difficult to manage during periods": Autistic experiences of menstruation

Source: Journal of Autism and Developmental Disorders, 48(12).

Author: Simantov et al (2022)

Title: Medical symptoms and conditions in autistic women

Source: Autism: The International Journal of Research and Practice, 26(2):16.

Author: Seers and Hogg (2021)

Title: 'You don't look autistic': A qualitative exploration of women's experiences of being the 'autistic other'

Source: Autism, 25(6):12.

Author: Cumin et al (2021)

Title: Positive and differential diagnosis of autism in verbal women of typical intelligence: A Delphi study

Source: Autism, Volume Online First:1.

Author: Samuel et al (2022)

Title: Sensory challenges experienced by autistic women during pregnancy and childbirth: a systematic review

Source: Archives of Gynaecology and Obstetrics, 305.

Author: Corbett et al (2020)

Title: Pubertal timing during early adolescence: Advanced pubertal onset in females with autism spectrum disorder

Source: Autism Research, 13(12).

Author: Moseley et al (2020)

Title: 'When my autism broke': A qualitative study spotlighting autistic voices on menopause

Source: Autism, 24(6).

Author: Dugdale et al (2021)

Title: Intense connection and love: the experiences of autistic mothers

Source: Autism, 25(7).

Author: Seers and Hogg (2022)

Title: "Fake it 'till you make it": Authenticity and wellbeing in late diagnosed autistic women

Source: Feminism & Psychology: An International Journal, Volume Online First:1.

Author: Pohl et al (2020)

Title: A comparative study of autistic and non-autistic women's experience of motherhood

Source: Molecular Autism, 11(1).

Author: Cazalis et al (2022)

Title: Evidence that nine autistic women out of ten have been victims of sexual violence

Source: Frontiers in Behavioral Neuroscience, 16.

Author: Grant et al (2022)

Title: Autistic women's views and experiences of infant feeding: A systematic review of qualitative evidence

Source: Autism: The International Journal of Research and Practice, Volume Online First:1.

Author: Pecora et al (2019)

Title: Characterising the sexuality and sexual experiences of autistic females

Source: Journal of Autism and Developmental Disorders, 49(12).

Author: Milner et al (2019)

Title: A qualitative exploration of the female experience of autism spectrum disorder (ASD)

Source: Journal of Autism and Developmental Disorders, 49(6).

Author: Hampton et al (2021)

Title: A qualitative exploration of autistic mothers' experiences II: Childbirth and postnatal experiences

Source: Autism, Volume Online First:1.

Author: Sedgewick et al (2021)

Title: Gender differences in mental health prevalence in autism

Source: Advances in Autism, 7(3):17.

Author: Dubreucq and Dubreucq (2021)

Title: Toward a gender-sensitive approach of psychiatric rehabilitation in autism spectrum disorder (ASD): A systematic review of women needs in the domains of romantic relationships and reproductive health

Source: Frontiers in Psychiatry, 12.

Author: Moseley et al (2021)

Title: Autism research is 'all about the blokes and the kids': Autistic women breaking the silence on menopause

Source: British Journal of Health Psychology, 26(3).

Author: Sedgewick et al (2019a)

Title: the friendship questionnaire, autism, and gender differences: a study revisited

Source: Molecular Autism, 10(40).

Author: Cook et al (2017)

Title: Friendship motivations, challenges and the role of masking for girls with autism in contrasting school settings

Source: European Journal of Special Needs Education, 33(3).

Author: Schalbroeck, F. et al (2019)

Title: Risk of non-affective psychotic disorder or bipolar disorder in autism spectrum disorder: a longitudinal register-based study in the Netherlands

Source: Psychological Medicine, 49(15), pp. 2543-2550.

Author: Croen, L. et al (2015)

Title: The health status of adults on the autism spectrum

Source: Autism, 19 (7), 814-823

Author: Kirsch et al (2020)

Title: Association of comorbid mood and anxiety disorders with autism spectrum disorder

Source: JAMA Paediatrics, 174(1), pp. 63-70.

Author: Cumin et al (2021)

Title: Positive and differential diagnosis of autism in verbal women of typical intelligence: A Delphi study

Source: Autism, Online ahead of print.

Author: Supekar et al (2017)

Title: The influence of sex and age on prevalence rates of comorbid conditions in autism

Source: Autism Research, 10(5).

Author: Wood-Downie et al (2021)

Title: Sex/Gender Differences in Camouflaging in Children and Adolescents with Autism

Source: Journal of Autism and Developmental Disorders. Vol. 51, pp. 1353-1364

Author: Sedgewick et al (2019b)

Title: "It's different for girls": gender differences in the friendships and conflict of autistic and neurotypical adolescents

Source: Autism, 23(5), pp. 1119-1132.

Author: Donovan, 2020

Title: Childbirth experiences of women with autism spectrum disorder in an acute care setting

Source: Nursing for Women's Health, 24(3).

Author: Fusar-Poli et al, 2022

Title: Missed diagnoses and misdiagnoses of adults with autism spectrum disorder | SpringerLink

Source: European Archives of Psychiatry and Clinical Neuroscience volume 272, pages187-198 (2022)

Author: Kentrou et al, 2021

Title: Stability of co-occurring psychiatric diagnoses in autistic men and women - ScienceDirect

Source: Research in Autism Spectrum Disorders. Volume 82, April 2021, 101736

Author: Angell et al, 2021

Title: Sex Differences in Co-occurring Conditions Among Autistic Children and Youth in Florida: A Retrospective Cohort Study (2012-2019) | SpringerLink

Source: Journal of Autism and Developmental Disorders volume 51, pages3759-3765 (2021)

Author: Lockwood Estrin et al, 2021

Title: Barriers to Autism Spectrum Disorder Diagnosis for Young Women and Girls: a Systematic Review | SpringerLink

Source: Review Journal of Autism and Developmental Disorders volume 8, pages454-470 (2021)

Author: Anderson et al, 2020

Title: When the mask comes off: Mothers' experiences of parenting a daughter with autism spectrum condition (sagepub.com)

Source: Autism. Volume 24, Issue 6

Author: Moseley et al, 2018

Title: Self-reported sex differences in high-functioning adults with autism: a meta-analysis

Source: Autism volume 9, Article number: 33 (2018)

Author: Cola et al, 2022

Title: Friend matters: sex differences in social language during autism diagnostic interviews | SpringerLink

Source: Molecular Autism volume 13, Article number: 5 (2022)

Author: Rynkiewicz et al, 2016

Title: An investigation of the 'female camouflage effect' in autism using a computerized ADOS-2 and a test of sex/gender differences | SpringerLink

Source: Molecular Autism volume 7, Article number: 10 (2016)

Author: Rea et al, 2022

Title: Sex Differences on the ADOS-2 (researchgate.net)

Source: Journal of Autism and Developmental Disorders · April 2022

Author: Whitlock et al, 2020

Title: Recognition of Girls on the Autism Spectrum by Primary School Educators: An Experimental Study - Whitlock - 2020 - Autism Research - Wiley Online Library

Source: Autism Research 13: 1358-1372, 2020

Author: Dillon et al, 2021

Title: Sex Differences in Autism: Examining Intrinsic and Extrinsic Factors in Children and Adolescents Enrolled in a National ASD Cohort | SpringerLink

Source: Journal of Autism and Developmental Disorders (2021)

Author: Leedham et al, 2020

Title: 'I was exhausted trying to figure it out': The experiences of females receiving an autism diagnosis in middle to late adulthood (sagepub.com)

Source: Autism. 2020, Vol. 24(1) 135-146

Author: Moseley et al, 2021a

Title: Autism research is 'all about the blokes and the kids': Autistic women breaking the silence on menopause - Moseley - 2021 - British Journal of Health Psychology - Wiley Online Library

Source: British Journal of Health Psychology (2021), 26, 709-726

Author: Kelly et al, 2022

Title: Sense-making narratives of autistic women diagnosed in adulthood: a systematic review of the qualita (tandfonline.com)

Source: Disability & Society

Author: Rogers et al, 2016

Title: Experiences of diagnosing autism spectrum disorder: A survey of professionals in the United Kingdom

Source: Autism: the international journal of research and practice

Author: Tsirgiotis et al, 2022

Title: A Mixed-Methods Investigation of Diagnostician Sex/Gender-Bias and Challenges in Assessing Females for Autism Spectrum Disorder | SpringerLink

Source: Journal of Autism and Developmental Disorders volume 52, pages4474-4489 (2022)

Author: Tubío-Fungueiriño, 2020

Title: Social Camouflaging in Females with Autism Spectrum Disorder: A Systematic Review | SpringerLink

Source: Journal of Autism and Developmental Disorders volume 51, pages2190-2199 (2021)

Author: Fowler and O'Connor, 2021

Title: 'I just rolled up my sleeves': Mothers' perspectives on raising girls on the autism spectrum (sagepub.com)

Source: Autism. 2021, Vol. 25(1) 275-287

Author: Jadav and Bal, 2022

Title: Associations between co‐occurring conditions and age of autism diagnosis: Implications for mental health training and adult autism research - Jadav - Autism Research - Wiley Online Library

Source: Autism Research. Volume15, Issue11, November 2022, Pages 2112-2125

Author: Mandy et al, 2022

Title: Mental health and social difficulties of late‐diagnosed autistic children, across childhood and adolescence (wiley.com)

Source: Journal of Child Psychology and Psychiatry 63:11 (2022), pp 1405-1414

Author: Huang et al, 2021

Title: Factors associated with age at autism diagnosis in a community sample of Australian adults - Huang - 2021 - Autism Research - Wiley Online Library

Source: Autism Research. Volume14, Issue12, December 2021, Pages 2677-2687

Author: D'Mello et al, 2022

Title: Exclusion of females in autism research: Empirical evidence for a "leaky" recruitment‐to‐research pipeline - D'Mello - Autism Research - Wiley Online Library

Source: Autism Research

Author: Bourson and Prevost, 2022

Title: Characteristics of restricted interests in girls with ASD compared to boys: a systematic review of the literature | SpringerLink

Source: European Child & Adolescent Psychiatry (2022)

Author: Tillman et al, 2018

Title: Evaluating Sex and Age Differences in ADI-R and ADOS Scores in a Large European Multi-site Sample of Individuals with Autism Spectrum Disorder | SpringerLink

Source: Journal of Autism and Developmental Disorders volume 48, pages2490-2505 (2018)

Author: Kaat et al, 2021

Title: Sex differences in scores on standardized measures of autism symptoms: a multisite integrative data analysis (wiley.com)

Source: The Journal of Child Psychology and Psychiatry. Volume62, Issue1, January 2021, Pages 97-106

Author: Kalb et al, 2022

Title: Analysis of Race and Sex Bias in the Autism Diagnostic Observation Schedule (ADOS-2) | Autism Spectrum Disorders | JAMA Network Open | JAMA Network

Source: JAMA Network Open. 2022

Author: Song et al, 2021

Title: Natural language markers of social phenotype in girls with autism - Song - 2021 - Journal of Child Psychology and Psychiatry - Wiley Online Library

Source: The Journal of Child Psychology and Psychiatry. Volume62, Issue8, August 2021

Author: Boorse et al, 2019

Title: Linguistic markers of autism in girls: evidence of a "blended phenotype" during storytelling | Molecular Autism | Full Text (biomedcentral.com)

Source: Molecular Autism volume 10, Article number: 14 (2019)

Author: Reindal et al, 2021

Title: Structural and Pragmatic Language Impairments in Children Evaluated for Autism Spectrum Disorder (ASD) | SpringerLink

Source: Journal of Autism and Developmental Disorders (2021)

Author: Wallisch et al, 2020

Title: Brief Report: Predicting Sex Differences and Diagnosis from Early Parent Concerns (researchgate.net)

Source: Journal of Autism and Developmental Disorders · January 2021

Author: Del Bianco et al, 2022

Title: Unique dynamic profiles of social attention in autistic females - Del Bianco - Journal of Child Psychology and Psychiatry - Wiley Online Library

Source: Journal of Child Psychology and Psychiatry 63:12 (2022), pp 1602-1614

Author: Kourti and MacLeod, 2019

Title: "I Don't Feel Like a Gender, I Feel Like Myself": Autistic Individuals Raised as Girls Exploring Gender Identity

Source: Autism in Adulthood: challenges and management

Author: Brown et al, 2020

Title: Am I Autistic? Utility of the Girls Questionnaire for Autism Spectrum Condition as an Autism Assessment in Adult Women

Source: Autism in Adulthood

Author: Moore et al, 2022

Title: The intersection of autism and gender in the negotiation of identity: A systematic review and metasynthesis

Source: Feminism and Psychology

Author: Hayward et al, 2022

Short report: Gendered workplace social interaction processes in autism - ScienceDirect

Source: Research in Developmental Disabilities. Volume 129, October 2022

Author: Cummins et al, 2018

Title: Supporting Minimally Verbal Autistic Girls with Intellectual Disabilities Through Puberty: Perspectives of Parents and Educators | SpringerLink

Source: Journal of Autism and Developmental Disorders volume 50, pages2439-2448 (2020)

Author: Corbett et al, 2022

Title: Examination of pubertal timing and tempo in females and males with autism spectrum disorder compared to typically developing youth - Corbett - Autism Research - Wiley Online Library

Source: Autism Research. Volume 15, Issue10, October 2022

Author: Karavidas and de Visser, 2022

Title: "It's Not Just in My Head, and It's Not Just Irrelevant": Autistic Negotiations of Menopausal Transitions | SpringerLink

Source: Journal of Autism and Developmental Disorders volume 52, pages1143-1155 (2022)

Author: May et al, 2021

Title: Overlap of autism spectrum disorder and borderline personality disorder: A systematic review and meta‐analysis - May - 2021 - Autism Research - Wiley Online Library

Source: Autism Research. Volume14, Issue12, December 2021

Author: Maddox et al, 2017

Title: Untended wounds: Non-suicidal self-injury in adults with autism spectrum disorder (sagepub.com)

Source: Autism. Volume 21, Issue 4

Author: Halsall et al, 2021

Title: "Camouflaging" by adolescent autistic girls who attend both mainstream and specialist resource classes: Perspectives of girls, their mothers and their educators (sagepub.com)

Source: Autism. Vol. 25(7) 2074-2086

Author: Bernardin et al, 2021

Title: "You Must Become a Chameleon to Survive": Adolescent Experiences of Camouflaging | SpringerLink

Source: Journal of Autism and Developmental Disorders volume 51, pages4422-4435 (2021)

Author: Holden et al, 2020

Title: Investigating Bullying as a Predictor of Suicidality in a Clinical Sample of Adolescents with Autism Spectrum Disorder - Holden - 2020 - Autism Research - Wiley Online Library

Source: Autism Research 13: 988-997, 2020

Professional practice

Author: Robyn Steward, 2018

Title: Autistic people and menstruation

Source: National Autistic Society

Author: Felicity Sedgewick, 2018

Title: Autistic female friendships

Source: National Autistic Society

Author: Autism NI, accessed August 2022

Title: Autistic girls and women

Source: Autism NI

Author: The Autism Community in Action, accessed August 2022

Title: Puberty

Source: The Autism Community in Action

Author: Breastfeeding Network, 2022

Title: Mums Supporting Mums

Source: Breastfeeding Network

Author: NHS, accessed August 2022 a

Title: Signs of autism in adults

Source: NHS

Author: Asperger/Autism Network, accessed August 2022

Title: Asperger and autism spectrum: women and girls

Source: AANE

Author: Claire Barnett, 2022

Title: "Could I be autistic, too?" Signs of autism in women with ADHD

Source: ADDITUDE

Author: Autism Hampshire, accessed August 2022

Title: Autistic women and autistic girls

Source: Autism Hampshire

Author: Zhara Astra, 2022

Title: We need better diagnostic tests for autism in women

Source: Scientific American

Author: Tamara May and Carol A Adams, 2022

Title: Autism is still underdiagnosed in girls and women. That can compound the challenges they face

Source: The Conversation

Author: Scottish Autism, accessed August 2022

Title: Women and Girls Online Support

Source: Scottish Autism

Author: William Mandy and Robyn Steward, 2016

Title: Women with autism hide complex struggles behind masks

Source: Spectrum

Author: Staffordshire County Council, accessed August 2022

Title: Autism in girls checklist

Source: Staffordshire County Council

Author: Autism Awareness Australia, accessed August 2022

Title: Women and girls

Source: Autism Awareness Australia

Author: Organization for Autism Research, 2018

Title: The autism dilemma for women diagnosis

Source: Organization for Autism Research

Author: Scottish Autism, accessed August 2022 a

Title: W&G - Parenting

Source: Scottish Autism

Author: Scottish Autism, accessed August 2022 b

Title: W&G - Introduction

Source: Scottish Autism

Author: Scottish Autism, accessed August 2022 c

Title: W&G - Diagnosis

Source: Scottish Autism

Author: Scottish Autism, accessed August 2022 d

Title: W&G - Education

Source: Scottish Autism

Author: Scottish Autism, accessed August 2022 e

Title: W&G - Post 16 Education

Source: Scottish Autism

Author: Scottish Autism, accessed August 2022 f

Title: W&G - Employment

Source: Scottish Autism

Author: Scottish Autism, accessed August 2022 g

Title: W&G - Mental Health

Source: Scottish Autism

Author: Scottish Women's Autism Network (SWAN), 2015 a

Title: Women, Girls and the Autism Spectrum (Diagnosis)

Source: SWAN

Author: Scottish Women's Autism Network (SWAN), 2015 b

Title: Women, Girls and the Autism Spectrum (Education)

Source: SWAN

Author: Scottish Women's Autism Network (SWAN), 2015 c

Title: Wellbeing

Source: SWAN

Author: Scottish Women's Autism Network (SWAN), 2015 d

Title: Healthcare

Source: SWAN

Author: amaze, accessed August 2022

Title: Women and girls

Source: amaze

Author: Autism West Midlands, 2020

Title: Autistic women and girls

Source: Autism West Midlands

Author: Parry and Mee, 2022

Title: Working with female adults living with autism in secure inpatient services

Source: Nursing Times

Author: Claire Jack, 2021

Title: 5 subtle signs of autism spectrum disorder in women

Source: Dr. Claire Jack website

Author: Natalie Engelbrecht, 2018

Title: Autistic traits in women

Source: Embrace Autism

Author: Gupta and Chaudhary, 2021

Title: Diagnostic challenges of high-functioning autism spectrum disorder in females

Source: Cureus

Author: Sheri Jacobson, 2021

Title: Women and girls with autism - are symptoms different?

Source: Harley Therapy Counselling Blog

Author: Kev Appleton, 2015

Title: Quirky Girls

Source: Altogether Autism

Author: Judy Eaton, 2018

Title: Adults: PDA & mental health

Source: PDA Society

Author: Young Minds, accessed August 2022

Title: Autism and mental health

Source: Young Minds

Author: nasen, 2016

Title: Girls and autism: Flying under the radar

Source: nasen

Author: Autistic Girls Network, 2022

Title: Autism, girls & keeping it all inside

Source: Autistic Girls Network

Author: Public Health England, 2019

Title: Autism self-assessment exercise 2018: overview of results

Source: Public Health England

Author: SIGN, 2016

Title: Assessment, diagnosis and interventions for autism spectrum disorders

Source: SIGN

Author: Rachel Moseley and Julie Turner-Cobb, 2022

Title: Autism and menopause: Q&A with Rachel Moseley and Julie Turner-Cobb

Source: Spectrum News

Author: Elektra Team, 2022

Title: Neurodiversity and menopause

Source: Elektra Health

Author: raisingchildren.net.au, accessed August 2022

Title: Autistic girls: periods

Source: raisingchildren.net.au

Author: Tsara Crosfill-Morton, 2020

Title: Managing your periods when you have autism

Source: Menstrual Matters

Author: Robyn Steward, 2019

Title: Periods can be overwhelming if you're autistic so I've created a step by step guide

Source: Metro

Author: Health for Teens, accessed August 2022

Title: Autism and menstruation

Source: Health for Teens

Author: Health for Teens, accessed August 2022

Title: Autism and managing your periods

Source: Health for Teens

Author: Rotherham Integrated Care Partnership, accessed August 2022

Title: Periods and girls with autism spectrum disorder

Source: Rotherham Integrated Care Partnership

Author: Amaze, 2019

Title: Download Amaze's autism accessible menstruation resources.

Source: Amaze

Author: INTIMINA, 2022

Title: How people on the autism spectrum experience and manage their periods

Source: INTIMINA

Author: raisingchildren.net.au, accessed August 2022

Title: Preparing for puberty: autistic children and teenagers

Source: raisingchildren.net.au

Author: The Ed Psych Practice, 2021

Title: Puberty is so much harder for children with autism

Source: The Ed Psych Practice

Author: Autism Society, accessed August 2022

Title: Puberty and children on the autism spectrum

Source: Autism Society

Author: Amaze, 2016

Title: Information sheet: Puberty and autism

Source: Amaze

Author: Centre for Autism Middletown, accessed August 2022

Title: Puberty

Source: Centre for Autism Middletown

Author: Clare Farquhar, accessed August 2022

Title: Breastfeeding if you are on the autism spectrum

Source: The Breastfeeding Network

Author: NHS, accessed August 2022 b

Title: Menopause

Source: NHS website

Author: Wild, S.

Title: Anxiety in girls with autism

Source: Good Schools Guide (accessed 2020)

Author: Carly Jones MBE (2022)

Title: Safeguarding autistic girls at school

Source: The National Autistic Society

Author: Helen Clarke (2018)

Title: Supporting autistic girls in schools

Source: Impact Articles

Author: Sarah Wild (2016)

Title: Limpsfield Grange School: teaching autistic girls

Source: The National Autistic Society

Author: Catriona Stewart, 2019

Title: Peer mentoring for autistic females

Source: SWAN

Author: Lana Grant, 2017

Title: Autistic women, pregnancy and motherhood

Source: National Autistic Society Professional Practice

Author: Diane Fox, 2022

Title: Supporting pregnancy autistic people

Source: National Autistic Society Professional Practice

Author: NHS East Suffolk and North Essex, accessed October 2022

Title: Maternity support plans developed to support women with autism

Source: Press release on NHS East Suffolk and North Essex website

Lived Experience

Author: Nadine Sibler, 2017

Title: Menopause: Just When You Felt Less Socially Awkward

Source: Autistic Women and Nonbinary Network

Author: Cynthia Kim, 2014

Title: Autistic Motherhood: Honoring Our Personal Choices

Source: Autistic Women and Nonbinary Network

Author: Cynthia Kim, 2014

Title: Motherhood: Autistic Parenting and Supports That Make a Difference

Source: Autistic Women and Nonbinary Network

Author: Cynthia Kim, 2014

Title: Motherhood: Autistic Parenting

Source: Autistic Women and Nonbinary Network

Author: Cynthia Kim, 2013

Title: Understanding the Gender Gap: Autistic Women and Girls

Source: Autistic Women and Nonbinary Network

Author: Cynthia Kim, 2013

Title: Autistic Women: Misdiagnosis and the Importance of Getting it Right

Source: Autistic Women and Nonbinary Network

Author: Outdoor Prescription, 2017

Title: Parenting and me, part 1 - the early years as a parent on the spectrum

Source: Outdoor Prescription

Author: Kirsten Lind Smith, 2014b

Title: Research Wising Up to the Fact that Girls Present Differently than Boys

Source: The Artism Spectrum

Author: Rosie Weldon, 2021

Title: Autism and periods

Source: Rosie Weldon Blog

Author: Cynthia Kim, 2012

Title: ASPERGER'S AND MOTHERHOOD (PART 1)

Source: Musings of an Aspie

Author: Cynthia Kim, 2012

Title: ASPERGER'S AND MOTHERHOOD (PART 2)

Source: Musings of an Aspie

Author: Cynthia Kim, 2012

Title: ASPERGER'S AND MOTHERHOOD (PART 3)

Source: Musings of an Aspie

Author: Cynthia Kim, 2012

Title: ASPERGER'S AND MOTHERHOOD (PART 4)

Source: Musings of an Aspie

Author: Cynthia Kim, 2012

Title: ASPERGER'S AND MOTHERHOOD (PART 5)

Source: Musings of an Aspie

Author: Cynthia Kim, 2014

Title: AT THE INTERSECTION OF GENDER AND AUTISM - PART 3

Source: Musings of an Aspie

Author: Cynthia Kim, 2013

Title: AUTISM AND MENOPAUSE: MORE QUESTIONS THAN ANSWERS

Source: Musings of an Aspie

Author: Cynthia Kim, 2013

Title: BEYOND THE TALK: WHAT ELSE AUTISTIC GIRLS NEED TO KNOW ABOUT PUBERTY

Source: Musings of an Aspie

Author: Purple Ella

Title: Autistic Women & Girls Conference Vlog|Purple Ella

Source: youtube

Author: Purple Ella, 2018

Title: Diagnosing Autistic Women and Girls

Source: youtube

Author: Sarah Douglas, 2019

Title: Autism and Sexual Vulnerability-One Woman's Story

Source: neuroclastic

Author: differentnotdeficient, 2019

Title: The Failings of the Mental Health System for Autistic Women

Source: NeuroClastic

Author: Dana Vilker, 2021

Title: Sexual Predators and Women on the Spectrum

Source: Neuroclastic

Author: Samantha Craft, 2016

Title: PAST TWELVE: ASPERGERS AND TEENAGE YEARS

Source: Everyday Autistic

Author: Wenna Fullerton, 2020

Title: My autism diagnosis as an adult

Source: Me Decoded

Author: Purple Ella, 2017a

Title: AUTISM AND PREGNANCY

Source: Youtube

Author: Yo Samdy Sam, 2019a

Title: Being an AUTISTIC mother: what's it like?

Source: youtube

Author: Purple Ella, 2017b

Title: AUTISM AND GIVING BIRTH

Source: youtube

Author: Purple Ella and Yo Samdy Sam, 2020

Title: Autistic parenting Q&A (with @Yo Samdy Sam )

Source: youtube

Author: Yo Samdy Sam, 2019b

Title: Autistic pregnancy: how I coped

Source: YouTube

Author: Yo Samdy Sam, 2021

Title: Autism in girls - I was wrong

Source: YouTube

Author: Yo Samdy Sam, 2021

Title: First trimester pregnancy update // Autistic and pregnant

Source: YouTube

Author: Yo Samdy Sam, 2019c

Title: Autism symptoms in GIRLS

Source: YouTube

Author: Olivia Hops, 2020

Title: 10 Female Autistic Traits | AUTISM IN GIRLS

Source: YouTube

Author: Olivia Hops, 2021a

Title: Masking in Autistic Females | AUTISTIC MASKING

Source: YouTube

Author: Olivia Hops, 2021b

Title: Autism and Relationships Part 1: Friendships | AUTISM IN GIRLS

Source: YouTube

Author: Olivia Hops, 2021c

Title: 9 Childhood Autistic Traits in Girls | EARLY SIGNS OF AUTISM

Source: YouTube

Author: Olivia Hops, 2021d

Title: Autism and Relationships Part 2: Romantic Relationships | AUTISM IN GIRLS

Source: YouTube

Author: Olivia Hops, 2021e

Title: I was Groomed as an Autistic Teen | AUTISM IN GIRLS

Source: YouTube

Author: Olivia Hops, 2021f

Title: 10 More Female Autistic Traits | AUTISM IN GIRLS

Source: YouTube

Author: Olivia Hops, 2021g

Title: Autism and Periods (+ Period Underwear Review and My Biggest Meltdown Ever) | AUTISM IN GIRLS

Source: YouTube

Author: Alex, Neurodiversity Foundation, 2022

Title: Autism in Women: How My Late Diagnosis Allowed Me to Fully Accept Myself (@potentia.neurodiversity)

Source: YouTube

Author: Mom on the Spectrum, 2021

Title: PARENTING WITH AUTISM: The Final Straw that Led Me to Seek Diagnosis // Autism in Women

Source: YouTube

Author: Mom on the Spectrum, 2021

Title: Periods and Autism // 9 Hacks for Managing PMS // Autism in Women

Source: YouTube

Author: Mom on the Spectrum, 2022

Title: 16 Overlooked Autistic Traits in Females / AFAB Individuals

Source: YouTube

Author: Agony Autie, 2018

Title: Autistic Women & Girls | What's That?!

Source: YouTube

Author: Purple Ella, 2017c

Title: AUTISM AND PMT|Purple Ella

Source: YouTube

Author: Autmazing, 2020

Title: Autism, Girls, and Friendship| My Personal Experience

Source: YouTube

Author: Autmazing, 2018a

Title: My Experience as an Autistic Mom of Autistic Kids: The Invisible Years

Source: YouTube

Author: Autmazing, 2018b

Title: How Autism Has Made Me A Different Sort of Mom (and why that isn't a bad thing)

Source: YouTube

Author: Hollie Mabbott, 2021a

Title: autism and girls//difference between autism in girls and autism in boys

Source: YouTube

Author: Hollie Mabbott, 2021b

Title: AUTISM in females SIGNS//life as an AUTISTIC GIRL

Source: YouTube

Author: Hollie Mabbott, 2021c

Title: my childhood traits as an AUTISTIC GIRL//living with autism as a child

Source: YouTube

Author: Hollie Mabbott, 2021d

Title: living with AUTISM as a GIRL//Why do autistic girls MASK?

Source: YouTube

Author: Becoming Autism, 2022

Title: Autistic and Pregnant | Managing The First Trimester

Source: YouTube

Author: neurodivergent me, 2021a

Title: Autism traits in girls and women⎥Autistic traits I struggle the most with⎥#actuallyautistic

Source: YouTube

Author: neurodivergent me, 2021b

Title: Pregnant & Autistic⎥1st trimester update⎥My experience being pregnant as an autistic woman

Source: YouTube

Author: neurodivergent me, 2021c

Title: 8 autism traits in girls & women, explained by an autistic woman⎥AUTISM IN GIRLS

Source: YouTube

Author: Ruby Woods, 2020

Title: My Autism Diagnosis Journey - Female With ASD

Source: YouTube,

Author: Erin R, 2022

Title: Adult Female Autism Diagnosis: My Experiences

Source: YouTube

Author: Meghan Levaughn, 2021

Title: Unmasked: Living With PMDD & Autism

Source: International Association for Premenstrual Disorders

Author: A Is For Aoife Not Autism, 2021a

Title: Autism and Periods

Source: blog

Author: A Is For Aoife Not Autism, 2021b

Title: Autism and Puberty

Source: blog

Author: Sara King, 2021

Title: My experiences of pregnancy, birth and motherhood as an autistic mum

Source: Royal College of midwives

Author: Hannah Clarke, (accessed Aug 2022)

Title: What is it like to be a woman on the spectrum?

Source: Neurodiverging

Author: Danielle, (accessed Aug 2022)

Title: Episode 11: A Struggling, Undiagnosed Autistic Girl in the 1990s

Source: Neurodiverging

Author: Carly Ott, 2017

Title: Autistic And Pregnant

Source: The Art of Autism

Author: April Griffin, 2016

Title: Gender Identity Issues And Females On The Spectrum

Source: The Art of Autism

Author: Alicia Trautwein, 2020

Title: Autistic and pregnant

Source: Motherfigure

Author: Rhi Lloyd-Williams, 2021

Title: AUTISM INTERVIEW #170: RHI ON AUTISTIC PREGNANCY, CHILDBIRTH, AND MOTHERHOOD

Source: Blog

Author: Alicia Trautwein, 2020

Title: The Challenges of Being an Autistic Mother with Autistic Children

Source: special educational needs

Author: Lucy Parker, 2019

Title: The truth about being autistic and a mother

Source: Motherly

Author: Lana Grant, 2017

Title: Autistic Women, Pregnancy and Motherhood - Lana Grant

Source: Spectrum Women

Author: Linda Hollenberg, 2021

Title: The Autistic Doula: Navigating the sensory challenges of motherhood

Source: Reframing Autism

Author: Autistic Women Everywhere, accessed September 2022

Title: AUTISTIC WOMEN EVERYWHERE

Source: Autistic Women Everywhere

Author: Sarah Vanis, accessed September 2022

Title: AUTISTIC WOMEN EVERYWHERE

Source: Autistic Women Everywhere

Author: Vanessa Hughes, accessed September 2022

Title: AUTISTIC WOMEN EVERYWHERE

Source: Autistic Women Everywhere

Author: Suzie Ramsay, accessed September 2022

Title: AUTISTIC WOMEN EVERYWHERE

Source: Autistic Women Everywhere

Author: Janey Klunder, accessed September 2022

Title: AUTISTIC WOMEN EVERYWHERE

Source: Autistic Women Everywhere

Author: Esther Whitney, 2022

Title: Personal Account: Breastfeeding as an Autistic Parent

Source: Autistic Parents UK

Author: Ruth Jenks, 2021

Title: Relationships with Healthcare Professionals (HCPs) during pregnancy, birth and the postnatal period

Source: Autistic Parents UK

Author: Keara Farnan, 2018

Title: Why It's Hard to Find a Boyfriend as an Autistic Woman

Source: The Mighty

Author: Nicole Seaward, 2021

Title: Autistic Womxn - Relationships

Source: Grit and Flow

Author: Hope Whitmore, 2015

Title: "Are You Angry With Me?": Dating as an Autistic Woman

Source: The Toast

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More women and girls than ever before are discovering that they are autistic. Many had been missed or misdiagnosed due to outdated stereotypes about autism. But that is slowly changing.

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Maisie Hill - periods, autism diagnosis in females

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Maisie Hill - periods, autism diagnosis in females

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Author and expert in menstrual health Maisie Hill joins Jameela this week to discuss the different seasons of the menstrual cycle, how different bodies respond differently to hormones, why perimenopause is a space to process the expectations on people socialized as women, why we are so bad at diagnosing autism in women, and more.

You can find Maisie Hill's books - Period Power and Perimenopause Power - on her website and wherever books are sold: https://www.maisiehill.com/

You can listen to Maisie's podcast - Period Power with Maisie Hill - Wherever you get your podcasts

You can follow Maisie on Instagram @_maisiehill_ and Twitter @MaisieHill_

If you have a question for Jameela, email it to iweighpodcast@gmail.com, and we may ask it in a future episode!

You can find transcripts from the show on the Earwolf website

I Weigh has amazing merch - check it out at podswag.com

Send what you 'weigh' to iweighpodcast@gmail.com

Jameela is on Instagram @jameelajamil and TikTok @jameelajamil

And make sure to check out I Weigh's Instagram, Youtube and TikTok for more!

Listen to I Weigh on the SiriusXM App for an all access pass for music, radio channels and plenty more - use this link: siriusxm.com/iweigh.

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Author and expert in menstrual health Maisie Hill joins Jameela this week to discuss the different seasons of the menstrual cycle, how different bodies respond

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When Maja Toudal was 18 years old she was at the shops with her boyfriend when she had a meltdown. She says, while the situation was very new to her partner at the time, he understood her Asperger's well enough to handle it perfectly.

Maja explains, "He gave me physical space, which is really important. And he provided simple instructions. He said, 'I'm going to take your hand now. We're going to stand up now. We're going right. We're going forward a bit. It's going to get bright now.'

"He led me out of the situation and sat me down and got me a glass of water."

Maja explains, "If a child has a sensory toy like a tangle or a fidget spinner you could give that to them too. You can also just open the phone and put on a YouTube video or a piece of music or something. So, distractions are very helpful. But, expected distractions. You definitely don't want surprises."

It's insider tips like this that have made Maja Toudal a leading voice on autism. She has written a book on her experiences growing up with autism - What Your Child With Asperger's Wants You To Know - and often speaks at conferences and workshops, providing advice to parents and teachers caring for children with autism.

She is also the co-creator of the energy accounting activity, which she developed with the help of Dr. Tony Attwood, a clinical psychologist. The activity is a way to help prevent a child with autism from becoming over-stressed and having a meltdown.

The energy accounting activity involves sitting down with a person with autism and creating two lists. A list of things that sap energy (withdrawals) and a list of things that replenish energy (deposits).

A numerical value is then assigned to each withdrawal and deposit to give it a weighting. Say 10 points means the activity gives/takes a little energy and 100 points means it gives/takes a lot of energy.

The idea is that when a withdrawal, or numerous withdrawals are made, deposits have to be made in order to prevent the account running into overdraft and a meltdown occurring.

Maja Toudal says she created the technique by analysing her own life and her own emotions.

"I didn't have the words growing up to explain to my parents what having autism was like. I developed the energy accounting activity to make it easier."

When she met Dr. Tony Attwood, he introduced the activity to his patients with great success.

As well as a clinician, Dr. Tony Attwood has written several books on autism spectrum disorder. Among them is The Complete Guide to Asperger's Syndrome, which has become known as the definitive guide to Asperger's, selling over half a million copies and being translated into 20+ languages.

Dr. Tony Attwood explains, "The energy accounting activity can be particularly useful because things can be different in autism and Asperger's compared to typical people.

"For example, socialising is often energising and enjoyable for typical people, but it can be draining and stressful in autism. And these stressors and de-stressors can be wildly different in individuals."

A big reason the energy accounting activity works so well is because it can be extremely draining to live with autism - even mundane activities can cause a sensory overload.

Maja explains, "You can generally expect a child with autism's energy to run low before your own. It's like a laptop running on batteries. When just two programs are running, the battery remains charged longer, but when the laptop's running ten programs at once, it dies quicker."

When I asked Maja if she has other advice to help parents and teachers better understand and support a child with autism, she referred me to the 10 rules from her book, What Your Child With Asperger's Wants You To Know.

1. There is something in this world that I am great at

"Every child with ASD (Autism Spectrum Disorder) is good at something," Maja says. "However, they may need help finding that talent, developing it, or sticking with it until they become good at it."

But once they do discover what they're great at, Maja says, "those children will experience tremendous joy."

2. I am a human being, no matter how different I seem

"Regardless of how much support a child needs due to their autism, he or she still deserves respect," Maja says.

"The way parents treat their autistic child will have a huge impact on his or her self-worth."

So although you can - and should - offer your autistic child help and support, you always want to do it with respect.

3. I need love

"It's tempting to believe children on the autism spectrum don't need love because they might not enjoy being touched or hugged," Maja says. "However, they absolutely do - oftentimes, they just need it to be expressed differently.

"You could express your love verbally rather than physically, or give a smile instead of a touch. You can also ask if the child wants to be hugged. And remember, if they don't want to be touched, don't see it as a rejection."

4. I am different from every other person on the spectrum

"Each person with autism is as different to the next as each person without autism," Maja says. "Children on the autism spectrum have different personalities, ways of expressing themselves, unique sensitivities, and diverse backgrounds.

"For these reasons, you can't - and shouldn't - assume a child is just like every other child on the spectrum. Instead, you should view a child with autism as being every bit as unique as someone who doesn't have autism."

5. I am trying

Parents of children with ASD may get frustrated when it doesn't seem like their child is trying. Their child might even be viewed as lazy.

Maja urges parents to trust their child is doing the best he or she can.

"Rather than viewing your son or daughter as not putting forth enough effort, it's important to understand they also wish they could do more and live up to others' expectations."

6. I need space

People can be overwhelming to be around. By contrast, spending time in solitude can be restorative for children on the autism spectrum.

"So, avoid the tendency to equate a child's need for alone time with loneliness," Maja says. Although children with ASD may experience loneliness, for the most part, they view solitude as desirable and restorative.

7. My energy is spent quicker

You can generally expect a child with autism's energy to run low before your own. Maja explains, "Because people with autism have sensory and processing programs that require active attention, their 'batteries' drain faster."

Parents and teachers should remember this when planning activities and setting expectations for a child with autism.

8. Sometimes, I need a day off

Maja asks parents to imagine what it would be like to never have a day off for the rest of their lives. This can be how children with ASD feel, because the only time they can relax is when they're alone.

While Maja realises that parents may view this statement as a slap in the face, she urges them to understand that it in no way diminishes their important role in a child's life.

9. Chill out

Although Maja understands that this is easier said than done, she encourages parents and teachers to do the best they can to 'chill out'.

"Feelings are contagious. So, when you get stressed out, your child picks up on this and becomes stressed as well."

"Rather than allowing that to happen, it's important to remain calm and act like everything will be okay. A child with autism is likely to pick up on these feelings and, as a result, your easygoing demeanour will go a long way toward maintaining a more harmonious household."

10. I need you to catch me, not carry me

"All too often, parents want to 'carry' their children and prevent them from experiencing any hardships along their journey," Maja says.

"You need to allow your child to get bruised from time to time. By doing so, you're showing them you believe in them. This mindset is incredibly important, because it helps children develop the confidence to succeed and is the foundation of self-worth."

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The Energy Accounting Activity for Autism

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When Maja Toudal was 18 years old she was at the shops with her boyfriend when she had a meltdown. She says, while the situation was very new to her partner at the time, he understood her Asperger's...

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Why So Many Women Don't Know They are Autistic with Katherine May

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Listen to this episode from We Can Do Hard Things with Glennon Doyle on Spotify. Author Katherine May recounts the moment she - at age 37 - discovered she is autistic and recognized herself for the first time.

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‘I was different, not broken’: how my autism diagnosis changed my life

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‘I was different, not broken’: how my autism diagnosis changed my life

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As her sons were diagnosed on the autism spectrum, Sandra Thom-Jones began to wonder if she too was autistic – and then fear that she wasn’t

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Samantha Craft’s unofficial female autism checklist 

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Samantha Craft’s unofficial female autism checklist 

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By Samantha Craft
Females with Autism: An Unofficial List
Section A: Deep Thinkers

1. A deep thinker

2. A prolific writer drawn to poetry

3. *Highly intelligent

4. Sees things at multiple levels, including her own thinking processes

5. Analyzes existence, the meaning of life, and everything, continually

6. Serious and matter-of-fact in nature

7. Doesn't take things for granted

8. Doesn't simplify

9. Everything is complex

10. Often gets lost in own thoughts and "checks out" (blank stare)

Section B: Innocent

1. Naïve

2. Honest

3. Experiences trouble with lying

4. Finds it difficult to understand manipulation and disloyalty

5. Finds it difficult to understand vindictive behavior and retaliation

6. Easily fooled and conned

7. Feelings of confusion and being overwhelmed

8. Feelings of being misplaced and/or from another planet

9. Feelings of isolation

10. Abused or taken advantage of as a child but didn't think to tell anyone

Section C: Escape and Friendship Section D: Comorbid Attributes Section E: Social Interaction Section F: Finds Refuge when Alone Section G: Sensitive Section H: Sense of Self Section I: Confusion Section J: Words, Numbers, and Patterns

1. Likes to know word origins and/or origin of historical facts/root cause and foundation

2. Confused when there is more than one meaning (or spelling) to a word

3. High interest in songs and song lyrics

4. Notices patterns frequently

5. Remembers things in visual pictures

6. Remembers exact details about someone's life

7. Has a remarkable memory for certain details

8. Writes or creates to relieve anxiety

9. Has certain "feelings" or emotions towards words and/or numbers

10. Words and/or numbers bring a sense of comfort and peace, akin to a friendship

(Optional) Executive Functioning & Motor Skills This area isn't always as evident as other areas

1. Simple tasks can cause extreme hardship

2. Learning to drive a car or rounding the corner in a hallway can be troublesome

3. New places offer their own set of challenges

4. Anything that requires a reasonable amount of steps, dexterity, or know-how can rouse a sense of panic

5. The thought of repairing, fixing, or locating something can cause anxiety

6. Mundane tasks are avoided

7. Cleaning self and home may seem insurmountable

8. Many questions come to mind when setting about to do a task

9. Might leave the house with mismatched socks, shirt buttoned incorrectly, and/or have dyslexia and/or dysgraphia

10. A trip to the grocery store can be overwhelming

11. Trouble copying dance steps, aerobic moves, or direction in a sports gym class

12. Has a hard time finding certain objects in the house but remembers with exact clarity where other objects are; not being able to locate something or thinking about locating something can cause feelings of intense anxiety (object permanence challenges), even with something as simple as opening an envelope

This unofficial checklist can be copied for therapists, counselors, psychiatrists, psychologists, professors, teachers, and relatives, if Samantha Craft's name and contact information remain on the print out. This list was created in 2012 and updated in May, 2016.

Disclaimer: This is my opinion and based on my experience after 12 years of researching about autism and being officially diagnosed with Asperger's Syndrome. It is not meant to replace the DSM-V Autism Spectrum Disorder definition nor is this list meant to serve as an official diagnostic tool. Hundreds of women have used this list in conjunction with the DSM-IV or DSM-V and a professional mental health professional's guidance. It is also based on 4.5 years of communicating almost daily with those that are diagnosed with autism and some that believe themselves to be on the spectrum. It is not all inclusive. Some will fit into categories and not be autistic/Asperian. This is meant as a springboard for discussion and more awareness into the female experience with autism.

This is an unofficial checklist created by an adult female with Asperger's Syndrome (AS) who has a son with Asperger's Syndrome. Samantha Craft has a Masters Degree in Education. Samantha Craft does not hold a doctorate in Psychiatry or Psychology. She has a life-credential as a result of being a female with Asperger's Syndrome and being a parent of a child with Asperger's Syndrome. She has created this list in an effort to assist health professionals in recognizing Asperger's Syndrome in females-for in-depth information regarding females with AS refer to Craft's book Everyday Aspergers.

This post is courtesy of Samantha Craft. Her original post can be viewed here. Samantha Craft is author of the book Everyday Aspergers: A Journey on the Autism Spectrum. Take a look inside Everyday Aspergers.

Related Blog: Ten Ways to Help Your Autistic Loved One
Top Ten Signs You Have Aspergers
The Art of Autism realizes many people come to this page with the questions, Do I have Autism? or Do I have Aspergers? We recommend diagnosis by a professional. There are a couple of popular online quizzes which will give you an indication if you are on the spectrum:

Header Art Work: Artist Lynda Lim

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Females and Autism / Aspergers: A checklist

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Samantha Craft has created an unofficial checklist for females on the autism spectrum. Included at the end of this blog post are a couple online quizzes - the Autism Spectrum Quotient and the Aspie Quiz

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The Female Autism Phenotype and Camouflaging: a Narrative Review

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The Female Autism Phenotype and Camouflaging: a Narrative Review