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.
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.
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?
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
I self-identify as non-autistic, the doctors have no idea what they’re talking about. And for the record, I am female.
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.
I am a woman diagnosed 2 and a half years ago. I have a child with a diagnosis and another with a dyslexia diagnosis. Other people said I was Autistic before I realised. I was a weird kid, bullied and teased as a teenager, and utterly clueless about social relationships. I was helped by getting a diagnosis privately (meaning I paid for the assessment). This was because waiting times in the NHS are ridiculously long, even though I was given a referral by my GP. I think it was pretty obvious all along and since I had a child already diagnosed it made sense to seek diagnosis myself. I needed to get the Clinical Psychologist’s report to fully understand my issues and see how that made things hard for me in personal relationships especially. It made sense and really helped. And I believe that there are quite a number of clinicians who are sensitive to the diagnosis of women.
I feel that if we are going to change the perception of Autism in the medical community we need to get diagnosed. It is one aspect of the whole picture, but until women push for diagnosis we will remain a statistical anomaly in Autism itself. And yes, it is not fair and it is not right. But if women want to change things for themselves and others like themselves they need to be brave and work for recognition and understanding.
I am an Artist, and Writer and a Musician. I have received no recognition socially and not been able to make a living from my skills because I am basically terrible at promoting myself. I did not spend long in the self identifying camp as it was the waiting time before diagnosis. Before that I did not know. I just thought the world was SUPPOSED to not make sense and be full of mean, confusing people with a few exceptions. The search for the truth has brought me here. I am beginning to find the courage to tell people about my diagnosis. I expect misunderstandings, prejudice, disbelief, and outright denial from others. I am willing to fight through that.
What is the point in discovering you really ARE different if you then continue to conform to external expectations. A certain amount of faking it might make it easier in some situations, but mostly it is too stressful.
I believe women should get a diagnosis and take themselves seriously. Autism IS disabling in a world not built for us. So we need to build a part of the world and make it strong enough to be accepted in the right way.
Once Dyslexics were labelled lazy, and now it is accepted and accommodate far more. The same thing should be worked towards for Autistic people too. We are not socially lazy, we are struggling with things that others cannot imagine and cannot understand.
Thank you for this article, it is so right in so many ways.
Things I would like to say:
1) my partner (male) was diagnosed last year at 53. His diagnosis was borderline. It was borderline because I compensate for a lot of his difficulties, and a diagnosis isn’t to identify if you are autistic, it’s to identify those who are affected most in their day to day life (and can therefore access support). It took him months to understand that last sentence.
2) my son (28) was labelled dyspraxic at age 16, and it got him the examination considerations he needed. At 25, his university counsellor suggested Aspergers, which we already knew, but was unqualified to officially diagnose, so he also self identifies.
3) my grand daughter (9) has no chance of a diagnosis because we as a family, accept her as she is and so her difficulties are minimal (presently). She self identifies as autistic but not outside of the immediate family.
4) my partner goes to a weekly autism support group where the clinical psychologists ‘support’ those who attend, by helping them to appear more ‘normal’. I feel that I am going to have to do something about this! It’s so wrong! This is in no way acceptance!
5) I think the behaviour of other humans, that I find so interesting, might just fit into the category of a special interest, although I’m not self identifying at this point, but it’s something I am considering.
Hi Jocelyn!
You may not remember me, or even see this reply, but I wanted to take a moment to reminisce. My name is Tracy and we were childhood friends in 3rd or 4th grade. Every now and then I like to search the names of friends I had growing up to see what they’re up to since the military took us all in every which way. Most of the time I don’t find anything about anyone, but I was happy to see you and Jess pop up! I don’t remember the exact moment we met, but it was probably at the playground that was halfway between our houses. We played at that playground a lot. You two came to my first communion and if I look hard enough, I might even be able to find pictures of it. I think I remember you coming to one of my birthday parties as well. I always thought it was so cool at how good you were at bowling. Those balls were (and still are) way too heavy for me. The memories all kind of blend together from back then, but I do remember that you and Jess were always great friends to me. We were just kids, but I remember your friendship. Reading your posts is eye opening to me. I remember sticking up for Jess when people were bullying her on a couple of occasions. We live in a cruel cruel world.
Anyways, before I keep rambling on. I just wanted to say hi.
Tracy