A week or two ago I went to Knoxville for a free opportunity to see the Grand Grandin Vizier of American autism. (Played by Clare Danes, of course. It seems obligatory to mention the award-winning TV movie about her). I had seen her lectures on YouTube and read her many contributions in books about Asperger’s and girls OR Asperger’s and employment. We have the same ideas about the types of jobs that would be nice for us to have if there were more of them.
I was so excited to get out of town for a day and find out what new things she had to tell us about ourselves. The place was packed. The overflow was 500 strong, but because I was there early I got to see her in the flesh.
By the end of the Q&A, I was livid. It took me a minute to figure out why though.
First of all, Ms. Grandin just gave the same stock presentation about “thinking in pictures” and showing her upgrades to a cattle death machine and her functional MRI pictures. Then she berated boys who are into video games as she typically does.
Secondly, the Q&A was a bit haphazard and perhaps not the best format for someone with her auditory processing difficulties. As far as I can tell she has never directly or satisfactorily answered an audience question. She would mis-hear the querent and then go off on an unrelated tangent she knew more about. Adorably, one little boy, the first one, came up to the microphone and asked her if she likes bugs. He never got an answer even after he asked a second time. Perhaps they need to give her written questions from the audience beforehand.
When non-autistic Americans think of adult autism they think of Temple Grandin and that’s a problem.
But that was merely annoying and not the thing that set me off. I watched person after person go to the microphone in front of her to ask their boring questions that she never answered. Several of the querents were little boys conspicuously dressed like Young Sheldons who had good questions, only one of which I can now recall.
The very last little Sheldon came up and asked (I’m paraphrasing), “How did you deal with peer bullying?” in a professorial and exact tone that I instantly recognized. She said something like, “I was OK in elementary school, but was sent away for high school after lashing out at other students in public school to a school for troubled smart kids.”
Interesting, but not helpful.
This little Sheldon thought so as well. He said something else with a lot of vocabulary words about being into math or something in his tiny, incongruous adult voice. The audience once again laughed, good natured-ly, at way he spoke. He looked around frantically at the laughing people, and it was then my temper reared up and I got this terrifying deja vu.
While the adults in the room thought he was a treasure of a little Aspie child and very entertaining, he didn’t know why everyone in that big room was laughing at him.
I recognized his voice as my own as a child, and the reaction of the adults as one that puzzled and confused me at that age too. I gathered from his question that he was beginning to have the increased difficulties with the other kids that I experienced around age eight. I got really into 19th century adventure literature like Melville, Poe, London, and Hawthorne in the 4th grade. When I spoke I used the same archaic vocabulary and prosody as a syphilitic Nantucket whaler. Adults thought it was adorkable and precocious, but my classmates DID NOT LIKE IT AT ALL.
I wasn’t into trains, or math, or, OK I was into dinosaurs big-time, but I was very verbal and into reading is what I’m trying to say. There seems to be this expectation that Aspie boys should go into manly STEM subjects and girls, well, should shut the fuck up if we exist at all. Not one spectrum woman or girl got to ask a question, which I thought was odd considering here we had a rare opportunity to ask an autistic woman to answer questions about her life experience. Ms. Grandin has never spoken much about how being female has affected her socially or occupationally or personally.
Grandin’s experience is not typical for a person with Asperger’s or autism both in the amount of assistance she received back then and how successful she was at her job.
(TONS of autistic females were there I must point out. The organizers preferred to trot out Young Sheldons and professionals whose questions were beyond her. I think she might not be as smart as we give her credit for. Forgive my blasphemy.)
I cried the whole drive home. It seems like the most urgent issues facing autistic people, especially females, are not being addressed in favor of turning an androgynous autistic woman, who is nothing like the vast majority of Aspies, into a national mascot for our community. When non-autistic Americans think of adult autism they think of Temple Grandin and that’s a problem.
Temple Grandin does not have Asperger’s Syndrome. She is on a different part of the spectrum and had speech and intellectual delays which put her out of the running for Aspie. These delays also led to her being identified and helped rather early. Apparently there were still schools for poor farm kids to go to who were smart and unruly. Not so now.
Not all of us “think in pictures.” Some of us think in words and patterns.
Grandin’s experience is not typical for a person with Asperger’s or autism both in the amount of assistance she received back then and how successful she was at her job. Her symptoms were more severe and led to her being identified when someone with no speech delay or learning disabilities would be tragically missed. I’m glad she got help and was able to make it so cattle are calmer when being led into mechanized death, but her story gives the impression that autistic people are generally being identified in time and getting proper interventions, AND WE ARE NOT.
Nearly everyone with Asperger’s from her generation, and a great deal of other autistics besides, were never identified or accommodated so that they could be successful. There are entire lost generations of failed and misdiagnosed autistics who still desperately need help.
There’s also the fact that if you are an autistic person with great verbal talent, you are kind of screwed. As I have explained, I’m not particularly high-functioning in my day-to-day, but I am articulate, intellectual, and able-bodied. I need some temporary disability benefits, but will never receive any help because of how I present as being more capable than I am.
In fact, I convinced myself for years that I couldn’t be autistic because I could understand humor and sarcasm and metaphor. Turns out you can have a brilliant sense of humor and not be literal all the time and also have great difficulty with autistic symptoms. Reading (particularly hyperlexia) goes a long way to overcoming these deficits and many female and male Aspies are missed because we are so verbally talented. Reading helps us figure out subtext in some situations where it would be harder for us and allows us to learn better cognitive empathy and conversational skills than some others on the spectrum who have different talents.
Not all of us “think in pictures.” Some of us think in word patterns. Educators and clinicians would do us all a favor to learn this.