Those familiar with the “discovery” of autism usually attribute it to Leo Kanner, an American psychiatrist working at Johns Hopkins in Baltimore. His famous monograph, published in 1943, was made possible with the help of assistants Georg Frankl and Anni Weiss, both of whom had previously worked with Hans Asperger, a pediatrician working in Vienna during WWII. Kanner had a narrow definition of autism. He thought it was a rare childhood psychosis and forwarded the theory of “refrigerator mothers” as the cause. Asperger thought it was far more common and existed on a “continuum,” or what we now call the ‘spectrum.’
Asperger’s position vis-à-vis the Nazi regime under which he lived put his research in the shadows, and it was only in 1991 that Uta Frith’s book Autism and Asperger Syndrome brought his work to the English-speaking world at large. The American Psychiatric Association included Asperger Syndrome, as distinct from autism, in the DSM-IV in 1994, and subsequently removed it from the DSM-5 in 2013.
I suspect the American health system, run by insurance clerks, had something to do with the redefinition. Approved treatments are contingent on the codes of the DSM diagnoses. Autism research is geared towards the most severely challenged, and those previously designated as having Aspergers are not being addressed.
I saw Dr. Temple Grandin, perhaps the world’s most famous living person on the spectrum, being interviewed circa 2005. She opened my eyes and I began a journey of self-discovery. Grandin addressed the autism/Aspergers diagnosis in a 2014 interview with Nancy Alspaugh-Jackson in a YouTube series produced by the Center for Autism and Related Disorders in Tarzana, California.
Grandin sees too many higher functioning autistic kids being babied in classes with their more severely affected peers. Her advice on job skills, responsibility, manners, and pushing kids to achieve their potential should be implemented into every child’s curriculum. As, she remarks in the interview above:
I think that merging Aspergers together with autism has made all of this worse . . . Every other diagnosis like dyslexia, learning problems, ADHD, you got a fully verbal kid. Only in autism, right now, are you getting a range going from smart computer geek down to someone with very severe challenges.
Due to the evolving definition of autism, another group has largely been left out of the mix of research and treatment: girls. Kanner’s rigid boundaries applied to severely autistic boys. Only recently have I found research about “camouflaging” – the technique girls on the spectrum use in social situations. As in many fields of research, the boys’ symptoms and behaviours were used as the benchmark for diagnosis, and thus treatment. This new research provides the following definition: “Camouflaging is the difference between how people seem in social contexts and what’s happening to them on the inside.” With girls, if you mimic the norm, you can fit in just enough to get by.
I have often described my difficulties with relationships in these terms. I am comfortable with those who are the same on the outside as they are on the inside. That’s why I feel so comfortable with animals. Group activities with too many different energies going in different directions were overwhelming for me. I would run out of kindergarten to stand in the hallway when it became too much.
My mother and teachers labeled me as painfully shy, a “normal” state for a girl who liked to draw and read. I don’t like to be in a crowd, but I do like to be in an audience, where we are all focused in the same direction. I excelled at certain subjects: mathematics, art, anything to do with animals. My IQ has been reliably tested at 148. I was reading Nancy Drew in grade 2 and The Godfather and Peyton Place in grade 5 and 6. I didn’t understand the parts about sex, and, pre-internet, I was too intimidated to ask anyone.
I was asked to go to the principal’s office in grade 1 to read him a story I had written and show him the illustrations I had made for it. While I liked to excel, the extra attention was uncomfortable. I could admire those who spoke a second language, or were naturally musical or athletic, but I always struggled to perform, feeling too many eyes and ears upon me. Puberty was the time when I was the most typical compared to my peers. The hormones overwhelming my cohort meant that everyone was socially awkward and unsure of what their emotions were telling them.
As a teen in the baby boomer filled suburbs of 1970s Montreal, I found a social group that felt inclusive and accepting, with easy-to-learn norms. They were what we would call the stoners. Everyone was an oddball or an outcast. Strangeness was celebrated. Smoking hashish relaxed me and I was able to participate in our stoner games, many of which were based on language or math. My encyclopedic knowledge was cool and my humour was appreciated. There were no tribal or racial boundaries with the stoners, and later with the musicians I befriended.
I spoke at length with a representative of Autism Speaks in Montreal a few years ago. They acknowledged that women of my generation were almost never diagnosed unless severely afflicted. In order to get a diagnosis in my province at this time, I would need to pay hundreds of dollars, as it is not accepted through referral. She told me they like to interview the parents (sadly mine are deceased) and, were I to get a diagnosis, it would make no difference at my age except to get me a slightly higher welfare pay cheque should I ever find myself in that situation.
Since research is ongoing and there are no blood tests, MRIs, or X-rays that can definitively tell if a person is on the spectrum, it comes down to a diagnostician observing behaviour and hearing anecdotal stories of one’s history. So I remain self-diagnosed, which I understand invites criticism. Fortunately, I don’t care. Had I been diagnosed as a child, I might have felt more stigmatized than I did just being the smart clumsy shy girl. I think of the backpacking tour of Europe I took after university and I hate to think that a diagnosis meant to help me might have sheltered me or prevented me from some of the best experiences of my life.
All I need is understanding – that is, to understand the world and the people around me. I often felt as though I were an observer of the human race, and I liked science fiction for that reason. There exist a lot of ultimate outsiders in books like The Man Who Fell To Earth and Stranger In A Strange Land. There was a man dreaming he was a butterfly dreaming he was a man. Is that how it goes? I recently told a friend that I always figured that if one day I were to walk out of the door and reality appeared completely different from what I knew (which, somehow, has always seemed a possibility to me), I would pretend and just play along, just as the science fiction protagonists would do.
In studies about girls and autism, the stated goal is often to provide programs to enable autistic girls to become the same as the neurotypical ones. This troubles me, and reminds me of programs designed for ‘gay conversion.’ My time alone can bring me great joy – painting, reading, thinking. I need some social interaction as every human does, but it is not nearly as pervasive a need for me as it is for some.
When I research Aspergers, I don’t look for advice from doctors or from parents. I look to the source – other adults who identify on the spectrum. In Steve Baker’s 2015 article “The Syndrome Formerly Known as Aspergers,” he talks about a “sweet spot” on the spectrum, and states that, if a cure were to appear tomorrow, he would not take it.
I have to agree (now) because many of my difficulties were with difficult and duplicitous people, and I’m not sure I would want to be able to see them as normal. My favourite thing about myself is the way I think and the way I perceive the world. One thing I have noticed about myself is that, compared to most, I am remarkably non-tribal. Because I never assumed I was the same as everybody else, I have to take each individual as they come. Characteristics like race or gender or sexuality or religion are not homogeneous.
My beliefs are emotions informed by logic. I am obsessed with fairness. I have abundant empathy for those oppressed or in far-off war-torn lands. I care deeply about the environment and animals being safe and free from cruelty. I feel kinship with feminists, but not a certain kind of woman who emphasizes their traditional gender role as the “right” way to be female.
A hypothesis is forming in the back of my mind that this may be a part of human evolution. Evolution is slow and messy and I feel bad for those severely affected, but that may be nature’s attempt that didn’t quite achieve its potential. I celebrate their humanity all the same. Ultimately, I feel that if other people were more like me, there would be a lot less strife in the world, and perhaps a lot more invention. As Dr. Temple Grandin has said, “Let’s think back to the caveman days, I don’t think the social yak-yaks around the campfire made the first stone spear.”
Marion Pennell lives in Montreal. Painting and writing give her purpose. She has seen Bruce Springsteen in concert 31 times and Jane Goodall twice. She likes to call herself a bleeding heart socialist liberal eco-feminist.