The Gender Shift – those who self-identify as autistic are my sisters #IfYouIDYouAreAutistic2Me

Model Jocelyn 1

Autistic people, diagnosed or not, are not here to prove themselves to you, me or anyone else by virtue of “how autistic they are.”

By Jocelyn Eastman

CN: A Teensy Bit of Vulgarity and Bad Language for effect

I’m truly a lucky woman. I don’t have any diagnosed children who would have compelled a diagnostician to test me and for the 32 years I  managed to fly under the radar. For those who have read previous posts of mine, there was absolutely no reason at the time of my diagnosis for me to even be diagnosed. I was there for a completely different reason. Yet, due to my developmental and family history, my provider did her due diligence when evaluating me.

Voila. I am “autistic.”

I didn’t cross the threshold of an office door transforming magically like a fairy-tale autistic queen, my provider waving her pen like a fairy godmother waving her wand. I knew I was autistic before then. I suspected I was autistic for over a decade.  For two years, to the disbelief and objections of family and friends I’d been self-identifying.

Yet suddenly, when I received the diagnosis from a medical professional my diagnosis became real. Mostly.

I still get, “Whatevs, you don’t look/act/seem/ [insert a ridiculous or stereotypical trait here] like an autistic person. These doctors just keep diagnosing people because it’s popular!”

It was so en vogue, it took me a decade of diagnoses of, “You are fat and depressed, here is incorrect medication that will make you feel horrid and hallucinate that technicolor dogs are chasing you and screaming for help! That other stuff you are trying to tell us? Well, it’s because you are a hysterical woman! I am the expert and you are simply crazy! No more nonsense from your smart mouth!”**

Yet I still need to defend myself. If I have a legitimate diagnosis, it isn’t real? When I had no choice but to self-identify because only fellow autistics helped me, people were on me like white on rice. It has been almost a year since my diagnosis and I still get people who don’t believe me. There are outspoken advocates who have called for self-identified or late diagnosed autistic persons to actually prove their autistic-ness.

This is not a game. This is not up for debate or rhetoric. This is my life and I am autistic. I should NOT have to relive traumas to prove myself to anyone. I choose to, but that is MY choice and I will do so on MY terms. Autistic people, diagnosed or not, are not here to prove themselves to you, me or anyone else by virtue of “how autistic they are.”

That’s not how any of this works!

I take that back. That IS how it works. It’s not how it SHOULD work.

Prior to my diagnosis, I self-identified. No one ever asked me about my history or what criteria I needed. They heard self-identify, and they made an assumption and attacked, when in fact their anecdotal outlook on self-identifiers, women especially, is looking more and more like it isn’t even backed up by the science behind autism. This should be a huge red flag. I was autistic the whole time.

Self-identification is important for women in the autistic community, and listening to their voices is going to be very important for future girls. They are a part of our community, and as someone who self-identified,  I’m not going to watch women and girls be bullied due to self-identifying. There are several scientific, diagnostic and social issues surrounding the reasons that we need to accept women and girls who self-identify, and they are related to the reasons why girls are misdiagnosed or undiagnosed.

Genetic mutations are starting to be looked at as a source of what might cause autism. The causation, for the purposes of this blog, is not important, but what they are discovering certainly is. To put it simply, scientists are noticing a relationship between genetic mutations and autism. The more mutations there are, the more disabling autism becomes. For some reason, females require more mutations to show up on a diagnostician’s radar than boys. Scientists have put forth the idea that females are protected from the effects of mutations by the, “Female Protective Model” theory. The model is not entirely protective. If a female experiences enough mutations, the degree of disability actually becomes worse than that of their male counterparts (http://www.ncbi.nlm.nih.gov/pubmed/24581740, the study).

The biggest issue with the theory is  the number of mutations to be “considered autistic” is based on the current diagnostic criteria, which is purely a diagnosis based on behavior. If we were to base diagnosis simply on genetic mutation, wouldn’t anyone with the mutation be considered autistic? Is there more at issue with the diagnostic criteria that might be missing those who, genetically speaking, would be autistic, but aren’t behaviorally considered as such in a controlled setting?

Wouldn’t that make a lot more sense than females having some strange protective genetic powers in only specific subsets of the population that no one can explain, other than theoretically?

To be fair, I am not a scientist…But Vinod Menon PhD of Stanford University IS a scientist. Menon had some things to say about the diagnostic criteria and gender differences in his study about brain structures between the sexes in autism. There is a difference. Menon further believes that autism has been studied from…*drum-roll*…a boy’s point of view. When it is studied from a specific point of view, it only makes sense that it will be diagnosed from that point of view. (The article pertaining to that study is at https://med.stanford.edu/news/all-news/2015/09/girls-and-boys-with-autism-differ-in-behavior-brain-structure.html).

Dr. Menon wasn’t the only one to think so. Thomas Fraizer director for the Center of Autism at the Cleveland Clinic and leader of a similar study seems to agree with that sentiment (https://spectrumnews.org/news/autism-characteristics-differ-by-gender-studies-find/ ).

If you are very disabled by autism, you happen to fit the diagnostic criteria from a boy’s prism (a la masculinized brain), you are very lucky or you manage to be diagnosed by virtue of having a child diagnosed, then you don’t need to self identify. Yay! That might cover…very few of the women I know.

Aside from the scientific and diagnostic issues of getting diagnosed, there is that simple fact of being female that stands in the way.

The societal expectations placed on women and girls allow them to fly under the radar and prevents diagnosis. Boys, in general, act differently behaviorally speaking than girls do. Girls are taught at a very young age how to be socially acceptable and socially compliant. Girls are groomed to be socially amenable and congenial. Unless there is marked disability and a girl has the ability to be academically successful, no one will bat an eye.

This same girl will probably have a lot of social issues at school, will likely be ruthlessly bullied and have difficulty in other unexpected ways, because she is expected to be indistinguishable and she is not. She will appear to be perfectly fine, but she is not. When she can no longer contain it, she  may implode.

She will probably be diagnosed with a lot of psychiatric issues. Suicidal attempts and ideation are not unheard of occurrences. Many of these will be misdiagnosed issues. Some of these will be the result of trauma. Anxiety and depression are not unheard of when living in a world not made for you.

She may be fixated on things that are socially acceptable. Whereas boys might fixate on trains or cars or schedules, girls may fixate on things that are acceptable to fixate on. Who is going to argue with a child fixated on getting good grades, being a successful athlete or on their favorite television show? Those things fly under the radar until they start becoming detrimental. Even then, it can be excused away, can’t it?

She probably stims too. She also has aversions and routines you might not know about. Maybe you do. Everyone has their little quirks. That’s how people excuse these things away. To her, these are not quirks. To her, the routines are essential to her well-being and being forced to engage in any of her aversions is painful to her core. Her stims are done secretly because she’s been shamed for doing them in the open.

The list goes on, but no one suggests this girl is autistic. She’s odd. She’s different. Meanwhile, she feels like she belongs on a different planet entirely. Like her alien race dropped her off and forgot to come get her. She has no explanations, no support, only the persistent insistence she act normal despite her quirkiness.

Now, she’s all grown up and she learns, however she may learn, about autism. She is unable, for whatever reason, to obtain a diagnosis, but it is SO HER.

And you want to put her down for it?

It seems a lot simpler than it really is.

**This was the response just from mental health professionals, and this is the tame version. The response for my physical disability was often worse and often was about my being a “crazy fat woman.” I can’t imagine, nor can I speak for the experience of being a person of color, a non-speaking person, a non-binary person, an openly queer person or any other marginalized group that I missed here. We need these perspectives.

****

Jocelyn Eastman was born October 21st 1983 with twin sister Jessica. Jessica was diagnosed as autistic at a young age, whereas Jocelyn was not diagnosed until 2015. She is currently known for authoring There Will Always Be Love, a children’s book about a sister who asks a lot of questions about autism and for being in the documentary The Sandwich Kids. She is also a contributing author to Easy to Love But Hard to Raise: Real Parents, Challenging Kids, True Stories, Autism World Magazine, and former radio show host for Innersight Freedom Foundation and ANCA. She has traveled around the country with her family speaking about autism and will be in the upcoming documentary Normal People Scare Me Too.

The Gender Shift is part of a new site on the Art of Autism under the Autism Shift – on shifting perceptions about autism.

5 Comments

  • Missy says:

    Thank you for this. I am a self-identified adult autistic woman. I came to realize that I was on the autism spectrum when I was 22. Prior to my realization, my older brother had been diagnosed, but it took a long time for me to understand that I could still have it, as it’s not nearly well-enough known how differently it can present in boys and girls.

    My autism is something I am certain of. I am equally certain that had I been diagnosed as a child, my school life would have been easier. Teachers would have been forced to acknowledge the validity of my traits with that label.

    There was a time when I wanted to pursue a diagnoses, simply because I couldn’t bear all the gatekeeping behavior from those insisting that I couldn’t have it. I spoke to my mental health care provider about the issue, but ultimately she convinced me that it wouldn’t be worth it just to appease those people. I was past the point in my life when making the label official would have done me any real good.

    Diagnoses can play a very important role in ensuring that people receive the treatment they deserve, but it’s very unfortunate that so many people believe that a diagnoses defines a person. The sky is blue whether you call it that or not.

  • Katherine says:

    Honestly, and this is coming from an autistic person diagnosed by a qualified professional, self-diagnosis is probably the worst thing anyone can do to themselves, EVEN if they have a background in the pertinent field. there’s a reason the medical community requires that a qualified professional diagnose conditions, be they physical OR mental/psychological/pertaining to the psyche. imagine if someone could walk into the ER and claim they had some exotic disease, and the doctor had no choice but to treat them for that, only to discover they simply had a common cold?

  • Jocelyn says:

    Dear Katherine,

    I appreciate your honesty on the matter, while it is true that self-diagnosis is not something that should be advocated as the way to go, I would ask that you look at things from a different perspective.

    I do not personally take things lightly when it comes to self identification, and I am not asking that others do this either. Most who I meet are completely lost in a broken system with absolutely nowhere to turn. A broken system that scientifically shows diagnostic rates being way off. The media touts a 4:1 ratio, science is bringing those rates closer and closer to 1:1 between men and women. 1:1.6 is one that I came across recently.

    Iran has a diagnostic rate of 2:1. Iran is doing a better job than we are.

    I do imagine the possibility that people walk in and start giving themselves diagnoses that do not pertain to them. I work in public health. The reality is, even women who walk into a mental health clinic and say that they are not depressed are being told that they are. I was told for YEARS that the pain I had in my body was in my head and that I was faking it.

    It turned out that I actually had a rare disease and now I am in a wheelchair. The pain was very real.

    I was also told for years that I was depressed and crazy. I self-identified as autistic. I had a twin sister- IDENTICAL – who is autistic – and was told that I was faking it. I was treated the same way your comment is treating the situation.

    People need help and support. Women would not be self-identifying as autistic if the diagnostic criteria was not living in the 1950’s. Until the media stops touting a 4:1 ratio that is not true, until I stop hearing that I do not look autistic and until I stop hearing from women who are begging me for my help because the system has completely failed them, I have no other choice but to believe them, because that same system that failed them also completely failed me in ways that most people don’t even like for me to talk about…it is simply to traumatic for them to listen to, and I lived it.

    I hope though that you turn that same annoyance that you have with this piece into a call for the powers that be to get their proverbial “crap” together, because I don’t want to fight with you over something we both agree on-

    This SHOULD NOT BE HAPPENING…

    <3
    Jocelyn

  • Haley says:

    I self-identify as non-autistic, the doctors have no idea what they’re talking about. And for the record, I am female.

  • Ganondox says:

    Male diagnosed with aspergers. The main problem I have with self-diagnosis is I would NOT self-diagnosis as autistic, so I can’t trust it to know if I’d relate. Than again, I’ve found I identity MUCH more with the experiences of autistic women, especially self-diagnosed ones, than autistic people in general.

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