Last updated on November 26, 2023
Nearing the end of NeuroTribes by Steve Silberman, the subtitle seems more appropriate: “The Legacy of Autism and the Future of Neurdiversity.” Finally, I’m making connections between various meanings of the title and the text.
The Legacy of Autism
Autism, at least for now, is an undefined disability, a handicap with symptoms in search of a cause. This is a problem of etiology and nosology: how we determine causes and labels for conditions. What is likely a medical condition was (and often is) associated with psychology instead of medical science (neurology and psychiatry, at least).
The label “autism” appears in red on the cover of some editions of NeuroTribes. The color acts as visual quotes around the word, reminding us that autism is unlike many disabilities. Vision and hearing impairments have clear causes and society has slowly adopted some considerations for those challenges. Paralysis, palsy, deformations, and injuries all feature unassailable causes apart from the person.
Nobody tells a Deaf person to “get over it.” Nobody claims a Blind child had a detached mother. Mental health issues are different, because the causes are assumed to be matters of choice and behavior.
Autism occupies a strange space between physical disability and mental health challenge.
My autistic traits have a likely cause: physical brain trauma. That was the same diagnosis as Temple Grandin and many others older autistics, but we know the details of my birth and the physical injuries I sustained. At the same time, I have psychological traits, too, such as deep anxiety, a need for order, perfectionism, and low self-esteem. Are these psychological traits a result of autistic neurological traits? Are my psychological issues related to how the world treats differences?
Autism is many things and nothing precise enough to satisfy the autism communities. The word has too many past meanings and an uncertain future meaning. I am uncomfortable with the fluidity of “autism” as a label, yet I can offer nothing better. That’s why The Autistic Me remains as it began: a quest to know what autism means to me and others.
Tribalism of Autism
The title is a play on tribalism, but I don’t belong to a NeuroTribe. Silberman offers a good history of autism advocacy groups, dating back to supports emerging immediately after World War II. Though mostly well-intentioned, too many of the groups focused on the deficiencies of autistics and quests for cures. These are not my tribe.
The number of tribes and their various divisions overwhelms me — and likely discourages many autistics, parents, and potential allies. The tribes stake out inflexible positions or embrace charismatic / dogmatic leadership. Each group believes the other groups to be deeply flawed in some way. Even the autistic figures turn on each other when one dares to communicate with or even support an organization perceived as anti-autistic individual.
The autistic-led groups have occupied the fringe, at least in terms of public awareness and support. Even those organizations and online spaces, including the Autistic Self Advocacy Network (ASAN) and Autism Network International (their website was last updated in 2013), are not my tribe. I used to skim posts on Wrong Planet and LiveJournal’s groups; these were the spaces of young, proud, Aspies — not me.
Unlike the autistic adults and teens described by Silberman, I find myself alone among both neurodiverse and neurotypical groups. I’m not at ease with anyone, and that’s a problem. We’re all neurodiverse — nobody is “allistic” or typical or normal. The quirks of any person can distract me or leave me confused.
Tribes might help us belong, but they’re a problem with autism advocacy, research, and support systems. Together, the shifting definition of autism and the tribalism of the various communities make connecting more challenging.
The Future of Neurodiversity
This blog and the associated podcast would not exist if I didn’t consider a future that embraces neurodiversity important. In our technology-driven society, it seems that neurodiversity offers a positive contribution. There’s little doubt that the scientists and innovators of the past include many with autistic traits. Many artists also rely on extreme focus and isolation to create their works. The tyranny of the extroverts threatens how great thinkers create.
As readers know, I resist the STEM stereotypes of autistics, yet I embody the stereotypes. The truth is, I like concrete information and order. Like the better-known autistic figures, I thrive within parameters and within clear systems.
Computers offered me a way to succeed in school and beyond — and back again, as a professor. Technology is the past, present, and future domain of many neurodiverse individuals. Technology allows us to participate, on our terms, to create a future for ourselves and others.
Overall, I enjoyed NeuroTribes though it did not reassure me that my tribe exists or is one in which I will actively participate.
The book offers a necessary history; a starting point for future scholarship thanks to Silberman’s efforts to bring together information that was out there waiting to be collated and organized. For his efforts, I thank Steve Silberman and hope others build on this text.