The trials of being a ‘good’ neurodivergent person

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?

Book Review: Autism’s Stepchild, by Phyllis Grilikhes

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.)

Evangelical Authoritarians and their Angry God (cw: religious abuse, rape, incest, anti-LGBTQ discrimination)

For people who don’t understand how the evangelical, usually Protestant, far-right exerts its influence on conservative Republican politics: let me explain, from the perspective of a social scientist and as a survivor of an evangelical Republican household who held these kinds of beliefs. If you’re unfamiliar with how authoritarian evangelicalism works, it seems utterly ludicrous that Republican politicians continue to pursue their anti-woman and anti-LGBTQ political agenda despite increasing public opposition. Marriage equality and legal abortion enjoy the support of a majority of Americans, but Republicans continue to oppose it steadfastly.

The God of these evangelicals is an authoritarian God who brooks no dissent from the party line. People who disagree with them are members of The World, working to advance Satan’s mission and subvert the will of God. Politics is not merely about competing policies and legislative priorities; it’s spiritual warfare. When conservative Christians battle against marriage equality, transgender rights or abortion, they literally believe that they are using political positions to battle against Satan and his legions of demons. And the stakes couldn’t be higher: if you don’t follow your denomination’s rules exactly, you’re going to hell. Permanent separation from God and his kingdom, and eternal torture as punishment. They’re inculcated with a visceral fear of going to hell, and they don’t want you to go there either. This results in conservative evangelicals encouraging theology and public policy that mandates conformity to their moral and social code, or ostracism for those who don’t. Persuasion isn’t enough for authoritarians. They want you – and the rest of society – to comply. It’s like the Borg from Star Trek; they want you to be assimilated.

Acts 10:34, a Bible passage often misused by conservative evangelicals to justify their position, states that ‘God is not a respecter of persons’. Within a more progressive Christian practice, God’s not being a ‘respecter of persons’ means rejecting partisanship, ethnocentrism and humanity’s foibles: our pettiness, our need for approval instead of doing what is right for those around us, our selfishness, our wantonness, our indifference to others’ suffering. For authoritarian Christians, however, this passage means rejecting the humane in favour of the inhumane in the name of God.

Evangelical Protestant preachers also teach that salvation comes not from good works, but through unalloyed faith in Jesus. It doesn’t matter whether you hide away in a gilded tower, hoarding wealth and treating poor people with disdain, or if you devote your life to helping your community. What matters ultimately is your devotion to Christ. Good works are encouraged by some evangelicals, but they are secondary. Naturally, devotion to Christ means adherence to all the legalistic rules that the authoritarian right considers necessary for entrance into the Kingdom of Heaven. It’s easy to support laws that starve poor and disabled people when acts of decency are secondary.

This is why Republican governors like Mike Pence and Pat McCrory push through regressive laws attacking reproductive rights and LGBTQ rights in their states, or why the Republican National Committee produced the most anti-LGBTQ platform in their history during the 2016 Republican National Convention, or why Republican politicians like the supposedly ‘moderate’ Marco Rubio and John Kasich support abortion bans without exceptions for rape or incest. They literally do not care about equal protection. Caring about equality means that they reject authoritarian Christianity. Worldly stakes don’t matter in comparison. They won’t budge because they’ve been conditioned to believe that changing their minds about marriage equality, abortion or trans rights means that they’re going to be roasting in hell after they die. This is why authoritarian conservative evangelicalism is so dangerous: it promotes social inequality and discrimination under the guise of devotion to a loving God, and it inoculates itself against dissent by promising eternal torture to everyone who strays away from the straight and narrow.