I recently published 50+ Autistic People You Should Know on NOS Magazine! I admit that the list is a bit US-centric, but that was mostly because I was listing people I knew personally or whose work I was reasonably familiar with. I didn’t just want to get a bunch of names and put a list of people there without vetting them. I’d actually like to work on a second follow-up list that’s less US-centric, since US-centrism is one of the things I make a concerted effort to try and avoid.
Sam Dylan Finch wrote about being a ‘good’ mentally ill person for The Establishment a few days ago. Though we have different diagnoses, I can still relate to the article rather intensely. My entire life has been a struggle to be the ‘good’ neurodivergent person. I’m autistic and have generalised anxiety disorder and depression, along with a few other brain things. I’ve been trained since early childhood to pass as neurotypical, starting with my early years in a preschool specifically for kids with disabilities and a speech and language pathologist I saw once after starting mainstream preschool.
Self-awareness has become a double-edged sword; on the one hand, I appreciate being able to understand myself more fully, but on the other, I struggle with intense self-consciousness. Growing up, I had every conspicuous neurodivergent trait scrutinised constantly by parents, teachers and other adults. I was told to have quiet hands, to stop dancing in the hallways, to stop twitching, to stop talking to myself. I was pressured into giving near-perfect eye contact even though it felt as though people’s eyes were boring into my soul when I looked at them. Everything was part of a concerted effort to make me indistinguishable from my peers. ‘Don’t do that! People will think you’re crazy.’ ‘Don’t do that. Other people don’t do that.’ I internalised a fear of People, with a capital P, and what they would think of the way I presented myself in the world. It grew even worse when I was a teenager and my parents started attributing some of my differences to Satan after they got involved with fundamentalist Christianity.
Even though I’ve long since rejected the idea that it is better for autistic people to pretend not to be autistic, it is still difficult for me to interact with people outside the disability community or my close friend circle without feigning neurotypical. I don’t judge other people for not ‘passing’, but I do judge myself terribly.
Even around people who do know I’m autistic and will probably expect less eye contact and more stimming, I still don’t feel right doing those things.
I feel as though I’m under constant scrutiny for my race, disability and queerness. It’s already hard to exist when you hear stories of yet another black person being shot by the police, new efforts by far-right governments to kill disabled people slowly through Social Darwinism in the form of budget cuts, or social conservative bullies trying to scare trans people out of existence through bathroom bills and constant barrages of hate speech. In order to be a respectable, credible advocate, I have to be performatively sane. I’m terrified of being institutionalised. I’ve never been in a psych hospital, but I’ve been threatened with it. I worry that dropping some of these performances will hurt my advocacy. Some of this is admittedly irrational and borne of anxiety; I know of other disability advocates who talk about their mental health neurodivergences with much more candour than I can muster. With so many intersecting forms of marginalisation, I feel there’s something I need to cling to in order to be heard. I reject respectability politics on principle, but have thoroughly imbibed it in my daily life because I feel I have to.
When I drop the mask, I’m much more conspicuously different from non-autistic and other neurotypical people. I talk to myself to keep my thoughts straight. I flap, I roll, I twiddle and spin. In fact, there isn’t a coherent, centralised ‘I’ here, but a number of different ghosts in this pain-ridden, fatigue-beset machine. I can make a good simulacrum of a centralised self, though. All these things take work to suppress. It’s exhausting. All that energy being used when it could be going towards things that would actually help me get through day-to-day life. I just want to relax, but I feel I can’t. Even at home I try not to do these things too often, even when my door is shut and nobody is watching. Though I’m crazy, I don’t want to seem too crazy. I support open neurodivergence in theory, but the praxis is daunting. I wonder: how much of this is necessary to survive, and how much of it will ultimately kill me by making me too exhausted to exist?
Though there are many narratives about children on the autism spectrum told by professionals and specialists, Phyllis Grilikhes’s Autism’s Stepchild (2016) stands out because of its historical perspective on the interpretation of autistic traits before the diagnosis became commonplace. Grilikhes’s narrative tells the story of a young girl, Jean, who would be diagnosed with autism nowadays, but in the 1940s and 50s was treated as a psychological oddity, a medical curiosity to be examined and scrutinised with no conclusive explanations for her seemingly abnormal behaviour. Jean’s story is told primarily through her mother, Dora, whom Grilikhes interviewed to capture her perspective as a mother navigating a frequently baffling and hostile medical system in order to secure appropriate care and education for Jean. Dora’s fight is interwoven with Grilikhes’s account of her personal relationship with Jean; Grilikhes worked as an aide for Jean for some years in Berkeley, California, before losing touch with the family after changing careers. We find out about Jean’s relationship with the famed psychologist Erik Erikson; her experiences with institutions and specialised schools that were entirely at sea when faced with somebody whose disability profile did not match the common diagnoses of the day; her abiding friendship with Grilikhes, who nurtured her creativity; and her tumultuous transition from childhood to adolescence and adulthood. Grilikhes has an engaging prose style, effortlessly drawing the reader into her narrative. One gets the sense that one knows Dora’s experiences intimately through Grilikhes’s retelling. Jean, however, is portrayed as mysterious – something of a black box, really – and this comparative lack of insight into Jean’s interpretation of the world may stem from Jean’s struggles with expressive language and Grilikhes’s own prejudices regarding autism.
Though Grilikhes is well-intentioned and seems to care genuinely for Jean and her family’s welfare, Autism’s Stepchild occasionally reflects common—and misguided—cultural tropes about autism and other disabilities. Some of these errors can be explained by the time in which the narrative takes place, but when Grilikhes is speaking in the present tense, it is glaring and mars an otherwise sympathetic narrative. She routinely refers to autistic people and other people with developmental disabilities as being ‘disturbed’ or having ‘mental illnesses’, showing a surprising ignorance of current language used about and by people with developmental disabilities. This would be somewhat more understandable in a layperson, but Grilikhes is a psychologist with years of experience working with people with disabilities and should be aware of changing terminology. She also falls prey to the ‘puzzle of autism’ narrative, in which autistic people are treated as inscrutable oddities—she even uses the word ‘inscrutable’ towards the beginning of the book—rather than fully ensouled people.
Most gallingly, Grilikhes cites the work of Ivar Lovaas – a research psychologist and the creator of what is now known as Applied Behaviour Analysis – as a positive, humanising figure who helped autistic people come into their own and navigate the world more adeptly than they would have without his treatment. According to Grilikhes, Lovaas played an instrumental role in helping Jean adapt to her environment more successfully than she had before. The laudatory treatment that Grilikhes gives Lovaas whitewashes the cruelty that he often inflicted on his patients. At the beginning of his career as a behaviourist, Lovaas used cattle prods and electric shocks to ‘correct’ his students’ behaviour. Though he later shifted to less physically harmful methods, there is no evidence that he fully recanted. Lovaas also collaborated with the disgraced George Rekers, a Christian Right therapist, on ‘conversion therapy’ that used electric shocks and other abusive methods to make gay and gender-non-conforming boys seem straight. The abuse that Lovaas inflicted on generations of students does not merit applause. What was done to these young people was cruel and inhumane, and it is morally irresponsible to ignore his record of maltreatment.
Autism’s Stepchild is worth reading to understand historical approaches to autism identification and treatment; however, Grilikhes’s uncritical treatment of Ivar Lovaas’ therapeutic methods, the inaccurate language, and the ‘puzzle’ stereotype of autism make it difficult for me to recommend it without reservation.
(Disclosure: the author sent me a copy of the book to be reviewed.)