Discussion:Women & Autism

Greetings Earthlings! ๐Ÿ™‚

Today, I’m going to discuss a very important issue within the autistic community- gender bias and the misdiagnosis of women with autism.

If I asked you to close your eyes and picture a person with autism, the majority of you will have pictured a man (most likely Dustin Hoffman! ๐Ÿ˜› ).

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The current ratio for male to female diagnosis of autism is estimated at 4:1 as the condition is thought to be rarer in women; however, many experts now believe that this figure may be as low as 2:1.

So why the discrepancy?

Did you know: Women with autism present differently to males on the spectrum?!

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Yep- as neurotypical men are from Mars and women from Venus, so too are autistic men and women from entirely different planets (maybe Krypton and Daxam for the DC nerds out there ๐Ÿ˜‰ )!

So how do women with autism differ from men?

For starters, several neurobiological studies have shown distinct anatomical differences between the male and female autistic brain (which I will explore in a separate post at a later stage ๐Ÿ™‚ ). Girls with autism are thought to have more active imaginations than boys and participate more in pretend play, often creating elaborate fantasy worlds (I had a particular penchant for this. My sister and I created an elaborate world for our teddies each night, so elaborate that our star couple had their own imaginary portable mansion when we went on holidays!! ๐Ÿ˜€ ). Reports also indicate that women have lower levels of restrictive and repetitive behaviours than men.

Evidence has also shown that women are better at recognizing emotions than males, almost as well as their neurotypical peers in fact, and demonstrate signs of better attentiveness in social situations.

As a gender, women are more socially inclined than men, and so female autists feel a greater need to make an effort socially.It is expected that women should be more social than men when it comes to communication, and as a result, we are often held to greater social standards. I can’t count how many times a teacher/my mother pulled me aside to advise or chastise me for my social ineptitude! ๐Ÿ˜› It was thought that I struggled, not because something was wrong, but that I simply didn’t try hard enough socially. Had I been a boy this would not have been the case.

One of the biggest differences between men and women with autism is the tendency among women towards social mimicry. Girls are particularly adept in masking their symptoms through observation of their peers, obscuring them from the view of parents, teachers and medical professionals.

I’m particularly guilty of doing this. For example, when someone asks ‘How are you?’, I honestly don’t know how to respond! Should I just say fine? Should I reciprocate the sentiment? Should I detail the many ways my life sucks at present?! Three of the simplest words in the English language and I struggle to respond! I eventually developed a mental phrase card in my head for common questions like these so that I would have a standard answer when called for, and 90% of the time you pass for a functioning human being! Other times you get caught off guard and situations like this happen ๐Ÿ˜› :

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My life is full of these little social coping mechanisms, which I’ll expand on separately at a later stage ๐Ÿ™‚

Finally, as previouslyย discussed, when it comes to specialist interests, female autists tend to have interests resembling those of their neurotypical peers (horses, Harry Potter, soap operas, Justin Bieber etc.), which can additionally hide them from view. Psychologists have also noted a ‘mothering’ tendency among peers of autistic girls, taking autists under their wing and adopting them into a social group. This further creates an illusion of social functioning for teachers, allowing these women to further slip beneath the radar.

As a result of all these differences, women are diagnosed much later than men, (men on average are diagnosed in childhood (~7 years); women as teenagers or adults) ย if at all.

But why it it only now that these gender differences are emerging?

Gender bias in autism can trace it’s lineage to the original observations of both Leo Kanner (described autism) and Hans Asperger (described Asperger’s syndrome) in the 1940’s. In Kanner’s work,ย โ€˜Autistic Disturbance of Affective Contactโ€™ (1943), Kanner observed a group of 8 boys, but only 3 girls with autism. Hans Asperger on the other hand, exclusively observed groups of boys, believing that AS was uniquely male! As a result, AS was not described in women until the 1990’s!!

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I know!

Consequently, the diagnostic criteria for autism has been largely based on the male model of the condition, and as such, many women like me have slipped under the diagnostic radar.

Due to our inherent talent for social mimicry, women with autism unknowingly find themselves hidden from view. The warning signs that are obvious in males are not always visible, and as a result thousands of women go un-diagnosed, or worse still are misdiagnosed.

Mental health issues such as OCD, eating disorders, ADD, bipolar disorder, anxiety and depression are frequently linked with ASDโ€™s and are particularly prevalent among women.
Experts believe that women with autism tend to internalize their autistic symptoms, leading them to exhibit greater depressive symptoms and experience higher levels of anxiety than male autists.

Women are frequently mis-diagnosed with mental health issues, whilst the underlying root ASD goes unnoticed.

The internet is filled with stories of these women who spent years in mental anguish without receiving the one diagnosis they needed. I recently came across an article where it tookย “10 years, 14 psychiatrists, 17 medications and 9 diagnoses” before a 21 year old girl got her autism diagnosis! You can read the article here: (https://spectrumnews.org/features/deep-dive/the-lost-girls/).

Researchers and clinicians have in recent years begun to adapt the diagnostic criteria to better serve autistic women, but there is much work still that needs to be done.

Rain Man‘ has dominated for too long- we need now to focus on “Rain Woman”.

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Aoife

 

11 thoughts on “Discussion:Women & Autism

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  1. It was thought that I struggled, not because something was wrong, but that I simply didnโ€™t try hard enough socially. Had I been a boy this would not have been the case.

    Well, I can certainly tell you that I was OFTEN reprimanded when I was a boy by my family for social ineptitude (“why aren’t you more like your brother”…brother was neurotypical)…the expectations were very high and I was even made a laughingstock by a teacher in class. My family thought erroneously that I was an introvert because I wouldn’t say much in group convos involving 3 or more people. Mom and younger brother were very socially skilled and extroverted and I was considered the black sheep. Younger brother was a skilled athlete as well and not a dummy. I DID benefit from mom’s social intelligence, so that helped me to compensate somewhat for my autism.

    So girl autists have better social skills than boy autists and this somehow makes girl autists disadvantaged? I don’t see it and I don’t see girls being held to a higher standard than boys. I think that there’s a common erroneous BELIEF that this is true, but my experience doesn’t support it.

    When it comes to romance, boy autists are at a severe disadvantage relative to girl autists.

    Puberty was good for me since my social skills improved because my confidence improved…likely due to a boost in testosterone. I developed a social circle of cool friends in high school.

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    1. Every person’s experience of autism is different. I can only speak from my experience and I do not claim to speak for all, BUT much of this information comes not from me but from research papers, articles and information provided by health organizations. Yes, women with ASD’s function better socially but because of this we ARE disadvantaged. Because we blend in we don’t get the help we need as most boys do and suffer greatly as a result. On the outside all seems fine, but inside is an entirely different story. Your experience of this may be different, but the majority women are disadvantaged over men. Particularly here in Europe there are serious issues in obtaining diagnoses for girls on the spectrum. This is not a common erroneous belief, but actual SCIENTIFIC FACT! Yes your experience was different, but this does not negate the countless thousands of cases where this holds true- that’s not how science works.

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      1. Here’s a scientific fact for you–suicide is the #1 cause of death of men age 35-45 and the #2 cause of death (after accidents) for men aged 15-35 because of social issues. Women commit suicide at 25% of the rate of men. Men are severely disadvantaged socially relative to women. We’re talking both those on the spectrum and neurotypicals in the USA.

        Men are much more likely to be imprisoned for nonpayment of child support–and much of the time the imprisonment is unfair because a man lost his job, didn’t have savings, had one year of income that was unusually high, etc. The apportionment of support is based on the highest income in the last few years and varies by state. This is in the USA. Not sure about Europe.

        Your claim about women being socially disadvantaged relative to men is not backed up by scientific fact. No doubt that women’s autism is frequently masked, but even when not diagnosed, women have substantial social advantages relative to men. I’m not saying that autistic women don’t have problems, but their social problems pale relative to men even when men’s autism is diagnosed and women’s autism isn’t diagnosed. I’m also not saying that autism not getting diagnosed in women isn’t a serious problem. But if we’re going to spend resources to help people, men need it a lot more.

        It’s not only women whose autism is masked. My own daughter, who’s a physician, didn’t believe at first that I’m autistic. Unless you can bring up statistics that show that my experience is anomalous, you have to go with experience since it’s the best data that you have. That’s being scientific. And if you REALLY want to have a scientific discussion, you cite publications (like journal articles) for the strongest support.

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      2. The sociology of the male gender is not under debate here, we are talking autism so your point is moot. This is just a general post to raise awareness around the issue of female presentation of autism and not intended to disregard the male experience. I am not disregarding your experience of social masking, I have a male friend who masked too, but as a general trend in autism women are predisposed to masking. This blog is designed to be lighthearted and informative for the general public and hence why I do not cite my academic references (that and academic referencing is a pain in the ass and I don’t have the time!) to make this blog more approachable. My focus is information not debate. You are entitled to your own opinions, but kindly stop trashing mine. I am very busy at present and do not have time for this.

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