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  • Pamela Ehn

ON DIAGNOSIS

I will admit it, I do not have an official diagnosis. But the path to diagnosis has many, many landmines, and WHO gets diagnosed has everything to do with race and gender.


In a way, it was both a blessing and a curse to be undiagnosed as a child. For one thing, I was not subjected to abusive therapies like ABA in an effort to make me "normal." And since my parents were also like me in their neurology, I never knew that I was different, though Lord knows, people outside the family, teachers, counselors, and peers, tried to pound that into my head. But on the other hand, I was not treated with any empathy at all. Not only was I bullied, but teachers frequently instigated it and encouraged it, because the way I was made them so uncomfortable and fearful. I used to run home to choruses of "KILL THE JEW!!" But I honestly think that the kids who chased me weren't genuine anti-Semites, but "KILL THE WEIRD KID WHO MAKES US FEEL UNCOMFORTABLE!" did not have the same snappy ring, so "KILL THE JEW!" it was.


I still did really well in school despite being constantly set up to fail. I would be taken out of class constantly for assessment tests, tests administered in the hope that once I fail, they could expel me from school and shunt me to special education. Unfortunately for them, the one thing I'm really good at is taking tests. And of course, this set me up to fail in my regular classes because I missed so much class time in taking those stupid tests. But that test-taking ability also worked well on my actual tests, so I was able to keep up in school despite missing so much class time, which made my teachers REALLY upset because they didn't want to teach me.


Things did get better once I got to junior high, where I found teachers who appreciated my intelligence and my quirky sense of humor, and where I started to grow taller than my former bullies. My teachers and peers still found me weird, but my musical talent persuaded them to tolerate me. And that same talent got me into and through college.


Where I hit a wall was after I graduated college. I couldn't get a job to save my life. Part of that was due to graduating into a truly crappy economy. But many times when I did manage to get a job, I kept getting feedback along the lines of, "It's not what you're saying, it's HOW you're saying it." Well, how am I saying it? I would ask. And then the convo would disintegrate into so much vaguery that I couldn't interpret, and then shortly thereafter, the job would be lost. It's not that I wasn't willing to "take the note," but the feedback I would get would be so vague as to be utterly useless. It basically amounted to "Just don't be you!"


This put me into despair. I felt that there was no way that I could ever accomplish anything in my life. And that propelled me into therapy.


Therapy turned out not to be the answer, however. What I really needed was a coach, someone who could role-play job interviews and other work situations with me. This is something that therapists do NOT do. Instead, they ask you a bunch of pointless questions about your mother and then diagnose you with a kind of diagnosis that says "NOT REALLY HUMAN. BEYOND ALL HELP." And then they blame you for it. This has always ended up being my experience with therapy. I am really sorry I wasted my time on it.


However, many of my friends started to suggest that I might be autistic. Temple Grandin's Thinking in Pictures had recently come out, and many of them saw a similarity to me. (And this is the last comparison to Ms. Grandin that I will tolerate. She's very problematic in the autistic community because of her ableist comments and her work as a spokesperson to Autism $peaks.) I read Donna Williams' autobiography, Nobody Nowhere, and I really related. So I thought that I should pursue a diagnosis. This was in the mid-90s.


You will have no idea how much resistance I ran across to that idea. "You can't be autistic! You can speak!" Every professional flatly refused to consider it. And I got misdiagnosed again and again. And I know it was a misdiagnosis because I would look up the diagnosis in the DSM and I wouldn't even recognize myself in it. I would fit maybe one criterion, and you need to fit six criteria for a definitive diagnosis. (Of course the DSM is a political document rather than a scientific one, but that's grist for another post.) I would point this out to the professionals, and they would tell me I was wrong. One psychiatrist, after a fifteen-minute interview, went so far as to say, "We know you better than you know yourself." Well, isn't that insulting, given that I made it a practice to know myself since the age of six! I feel so much better having my own brain mansplained to me!


The resistance to having me assessed was incredible, but finally they assented to do that. And the results were really interesting and weird. In some sections of the test, they had to stop it early because I was performing too perfectly. And there were some sections of the test where I barely beat out a cucumber, but only if the cucumber was having a really bad day. But even then, the closest I got to a diagnosis was "possible autism, but really, we think it's BPD!" (BPD is the default diagnosis that professionals saddle autistic women with. An acronym for borderline personality disorder, it basically translates to "COMPLETELY BEYOND HELP. ABANDON ALL HOPE ALL YE WHO ENTER!!" And yet, these same professionals who insisted I was beyond help and all hope, resisted the autism diagnosis because it was a "no-hope" diagnosis. I wish the Wix client would allow me to put in a rolling eyes emoji here.)


"Test shows you have an IQ of 115. You're nothing special!" said the Most Evil Therapist Ever. Well, yeah, if you averaged the entire test, that would be true. But she totally and deliberately ignored the fact that I had such gross differences in intelligence in different areas, that in some areas I was a genius and in others I was clearly disabled.


Later, I realized that I didn't know how to read facial expressions. I thought that was a significant discovery, so I told METE, and she said, "Nah. You just don't have any empathy." Fortunately, I'm a really bad patient so since *I* thought this was a good discovery, I set out, at the age of 25, to teach myself facial expressions. I would stand really close to my friends, staring them down and peppering them with questions: "Are you sad? Are you hungry? Are you angry? etc." God bless my friends because I must have been the most annoying person on earth. But they seemed happy that I was finally showing an interest in them. And now I can read faces fairly well.


One day, I was paging through the DSM, which I did for funsies when I was depressed, trying to figure out what the hell was so wrong with me that I couldn't get my life together. I turned the page to Asperger's, and I fit HALF the criteria, 25 out 50, more than enough for a definitive diagnosis. (My dad actually fit ALL the criteria!) Then I turned the page to Hyperlexia. And I began to cry. I fit every single criteria. It described me perfectly. I never felt so found.


Hyperlexia is a type of autism where the child learns to read long before they learn to talk. My parents took my early reading as a sign not to worry about my lack of speech, and they just rolled with it. They were unsure how much I understood when they spoke to me (much better than they thought I did), so when they wanted to communicate with me, they would write me a note. Hyperlexics also have an easier time making friends than people with Asperger's, although they still have real social deficits. This is also me. And of course, when I showed this diagnosis to the professionals, I was told I was wrong, that I was a liar, and that I couldn't possibly know what I was talking about because only THEY could know my life experiences. (And of course, any time I tried to talk about my life experiences, the more traumatic they were, the more they told me it never happened and I was just making it up.)


(Asperger's and hyperlexia no longer exist in the DSM-V. Everything has been lumped together under ASD in yet another political move. These definitions existed in the DSM-IV.)


Well, I'm done having my brain mansplained to me by the so-called professionals. I know I'm autistic. This is who I am. And because I know I'm autistic, I was able to eventually solve the problems that kept me from being employed. Instead of putting up with therapists who all told me that I kept getting fired because I was just a terrible person, I realized that the problem was that I didn't understand social cues, so I set about learning them. And with no help from anyone, I did eventually learn them, at least to the point where I'm no more socially clueless than the average neurotypical. And voila, I was finally able to get and keep jobs, though the effort does take a lot more spoons than for NT people. I'm still learning what I need to do to accommodate my needs so I can advocate for myself effectively. I'm still learning what my needs are.


And then I also found the autistic community online. I read the words of so many people who had experiences that were identical to mine, many of whom were diagnosed. And I was like, "Wow! They are just like me!" And then, "Oh crap! They are just like me!" This was back when there were very few supports for autistic people and most were left to struggle on their own, and the goal back then was to mask and pretend to be neurotypical, which is a recipe for burnout. It just can't be done long-term and it's terrible for the self-esteem, So even without an official diagnosis, I have always felt a part of this community. These are my peeps.


But my life story shows just how hard it is to actually get a diagnosis. It's a lot of work and it comes with very little reward. I would probably be considered too "high-functioning" (we hate functioning labels) to get any supports at all, even though I may need them. But I've gotten into way too many fights online with some diagnosed autistics and autism professionals, all of whom are white and male, who doubt my identity because I am not diagnosed even though I have the exact same issues they do.


And that is because the diagnostic criteria is based on white males. It makes no allowance for how it manifests in girls, nor how it manifests in other cultures other than white North American culture. So organizations like Autism $peaks "Light it Up Blue" on the fallacious notion that only boys are autistic, among the other damaging fallacies they spread. There are tons of undiagnosed people wandering around who are told that they can't be autistic because they are women, or are denied supports because they are not white. Autistic people of color are more likely to end up in jail rather than get the educational supports they need.


Who gets diagnosed is a matter of privilege, and Lighting it Up Blue is not only ableist, it's also the most virulent example of white privilege weaponized to oppress all autistics. (Have you noticed that anti-vaxxers are almost entirely white? Mothers of color are more concerned with keeping their babies alive and not die of preventable diseases to worry about autism, because to be that ignorant of science and to insist on your right to be a danger to every immunocompromised individual out there is the EPITOME of white privilege. Also, anti-vaxxers hate autistics and want us all dead. I don't tend to run across ableist attitudes in communities of color.)


Don't light it up blue this month. Light it Up Gold. By lighting it up gold, you show you actually care about the quality of life for autistics, whereas Autism $peaks and Light it Up Blue is about forcing us autistics back into the closet of masking, pretending to be who we are not, and researching eugenic cures to get rid of us. Don't support eugenics? Don't light it up blue!


Light it Up Gold!

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