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Autistic women and girls (no its not an oxymoron)

11/1/2017

5 Comments

 

A recent women’s hour piece on “Late Diagnosis Autism” began with the statement that “of course there are more men and boys with the conditions”.  To me there is no “of-course” about this, it’s a non-fact; what we know is that more men and boys are diagnosed with autism. However we also know that most autistic adults are undiagnosed and many are misdiagnosed. This mismatch between popular belief and reality reminds me of the account that lesbianism was never made illegal, unlike gay male sex, because Queen Victoria didn’t believe it existed.

My guess (and at the moment we don’t have the data to know the truth of this, we can only make informed guesses) is that there are probably as many autistic women as autistic men. It’s just that, as is often the case, the men have got all the attention.  

In the groups I run for autistic people there are generally more women than men (I suspect this is because autistic women, just like non-autistic women, tend to be more social than men). Autscape (an annual conference/retreat for autistic people) seems to attract equal numbers of men and women, and a quite a few non-binary and trans people as well.  

Jane Garvey presenting the women’s hour piece wondered if women are not being identified because “we are more adept at managing or masking the symptoms”. I am not sure that this is the case; I think that, just as non-autistic women have different behaviour profiles to non-autistic men, so autistic women have different behaviour profiles to autistic men.  
I conceptualise it like paint.  Say you have yellow paint (autism), if you add it to blue paint (men) you get green paint, however if you add it to red paint (women) you get orange paint.  Of course, if you assume that autism looks like green paint you won’t identify that orange paint is autism too.  However, if you are able to split colours and see what is really going on you might notice that there is as much yellow in the orange as there is in the green.

A way to address this imbalance would be to have as many autistic people as possible talk openly about autism. We need enough of us out there so that the experiences and attitudes of specific individuals are not taken to define autism more generally. This is particularly important because autism is so heterogeneous -  autistic people are outliers in all directions – and both autistic individuals and the medical practitioners currently invested with the power to grant diagnoses are susceptible to catching on to a particular trait of autism and thinking a person can’t be autistic without it.  I’ve lost count of the number of autistic women who were initially told by professionals that they could not be autistic for invalid reasons, such as “you looked me in the eye” or “we’re having a coherent conversation”.

I think that we need to be challenging all the stereotypes about autism including that there are more autistic men than autistic women.  If you are interested in learning more about how autism affects both women and men you might like to come to one of my training sessions or indeed if you are autistic yourself or wondering if you could be, you might like to listen to comments about Exploring Identifying as Autistic and get in touch if you're interested in coming along.  As ever I welcome comments and responses to this post.

5 Comments
Planet Autism
17/1/2017 05:09:11 pm

I do think the lack of recognition of autistic females is because of both the male bias in the diagnostic criteria but also due to masking. I think females are more inclined to mimic as well. The stereotypes which even clinicians are very slow to stop thinking by, imagine we are into train timetables and can't make eye contact. As you say, females are more social than males, even when they are autistic and with the mimicking that goes on, it can be misleading for autistic females to look like they are part of a circle of friends when in fact they are on the periphery trying very hard to look like their peers. I know I have people-watched from a young age and calculated what was expected of me socially. But the studies show that despite females being able to hide their autism or display it in much more subtle ways compared to males, our difficulties come out at the same levels in tests of both genders. Here is one study on masking in females and the male bias: "The art of camouflage: Gender differences in the social behaviors of girls and boys with autism spectrum disorder" https://www.ncbi.nlm.nih.gov/pubmed/27899709

Reply
Caroline Hearst
18/1/2017 08:04:22 am

Thanks for sharing this article, which I was delighted to find is availabe free online.

However it seems to me that this research assumes that being autistic is an objective fact that is known about all autistic people, and you can therefore compare traits of autistic men and women. However actually diagnosis is a highly subjective process.

I think it is possible that autistic males who mask and don't present in the expected way for males are simply not diagnosed as autistic - or not diagnosed till much later - and are therefore excluded from research like this.

I suppose I think that much research about autism which relies on diagnosis as a marker of who is autistic is liable to the bias of diagnostitians, who we are aware are not objective.

Reply
Wendy
28/1/2018 06:22:15 pm

I have been wondering about the possibility that girls are being diagnosed with Borderline Personality Disorder instead of Autism. Are the ratios of male and female for each diagnosis the same? I can't help feeling that females are diagnosed as having BPD and males as having autism. I know of lots of women who's sons have been diagnosed with autism yet they have BPD. I was diagnosed as having BPD in my early 20's and although it seemed to make sense I still didn't feel I was the same as others when I tried to attend groups. I had an assessment for Austism about 10years and although they agreed that I fitted the criteria for a adult they couldn't diagnose because I didn't have school reports and more info of when I was a child. I am currently trying to seek another assessment but I do believe that it is easier for professionals to diagnose Borderline Personality Disorder than assess for any other issues particularly for females.

Reply
Gnasher’s Mam
12/11/2018 02:52:44 pm

I completely agree with your view on BPD, I am currently half way through the diagnosis process as I believe I have Aspergers traits but a few years ago 4-5, I was overworked to the point of exhaustion and was off sick for 4 months, first diagnosed with Anxiety and then later Depression and was referred to Mind, and a workplace retention support worker helped me get back to work with a phased return. She gave me lots of information about depression to help me, but I did not identify with any of it. So in an effort to identify my real problem (I actually believed I had worked myself into the ground, while wondering why no one would help me) I read the descriptions of all the other mental disorders on the Mind website (and Autism was not included at that time) and told my support worker a number of times that I believed that my personality aligned the most with the description Mind gave for BPD, however I was advised that since I had been seen by 4 Doctors who all agreed I had Depression, that I should accept that it was possible that they knew better. So I didn’t look into it further, I had previously dismissed Aspergers around 10 years prior to that, after a colleague who’s stepdaughter had been diagnosed with Asperger syndrome and was elective mute told me that she believed I had many of the same behaviour traits as her stepdaughter, because when there was limited information available on line compared to today I looked on line and I read ‘difficulty with social communication’ and took that to mean, unable to speak to other people. I am able to speak to people, and therefore dismissed the idea. I’ve since been pushed out of two jobs and so needed to look again at why everything seems to go wrong for me, no matter how hard I try to be perfect at everything I do. Why people use me and why I must appear to be someone who will let them. I took the on line test and scored very high so went to see my doctor and was referred to the diagnostics team. Otherwise I would have probably still believed that I was a bit/more likely suffering from BPD based on the information I had read. I think that the way that Autism is described in many websites makes understanding what social communication looks like, if you do not have it, virtually impossible to grasp or identify as missing in ones self. Perhaps this is another contributing factor to your suggestion that many autistic people have been diagnosed instead with BPD. I hope you have managed to access another assessment as I think you are correct in knowing yourself and how you compare to any diagnosis you may have been given.

Reply
Michele Gorman link
1/1/2022 08:45:04 am

Iv been reading up on autism and i think iv just realised what has been wrong with me for all my life! Im looking for advice and help to get diagnosed! I feel depressed and desperate atm! Covid has made it almost impossible to get to get to see a doctor! Many thanks Michele Gorman

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