“Congestion and Contemplation”
Three weeks ago, I went to Singapore for a whirlwind of social and familial happenings. I ended up falling really ill and returning in a bad state. Happily, I am on the mend, and finally have some beans back, though it has been a slow haul.
I could not have predicted how sad I would feel that I couldn’t horse around with A. I worried about him getting sick, and I also just didn’t have the energy. Plus my congested coughs drove his senses crazy, so we had to give each other lots of space. He took it pretty well, but he is my beautiful sweetie, and not being able to pick him up for a bear hug, and not being able to kiss his little cheeks really did not do anything for my grumpy ass recovery process.
Pathetically grateful to be well enough now, I spent yesterday evening romping with A, and he tolerated my demonstrative affections with measured amusement. Mostly he used ABA methods on me, and traded kisses for screen time. Beast. How I adore him.
For various reasons, I have been placing our goofy love for A alongside contemplating my stance on autism in the world. It is possible to become too intellectual about the various ‘handles’ one can grab onto to understand the big picture. Early intervention, IEPs, feeding, behavior, transition blah blah. But the fundamental reason behind why families like mine sort of get flung into our own universe, then have to cringe our way through interacting with the world, even when the world may mean kindly, is that fateful roll of the dice—whether, when you get flung afar, you land amongst kinfolk and kindred spirits or not. It’s partly kismat. And partly it can become a guided choice we make because the world is such a different and harrowing place when your family is the one scattering the molecules and getting stared at and commented on in public spaces, even private ones.
But I don’t really want to talk about that right now.
Somewhere between ‘my child will probably grow up to need a ton of disability support so stop trivializing his needs’ and ‘vocal autistic self advocates don’t really say the things that resonate with my child’s experience’ is where I land. I cannot define it better than that at this stage because mid-journey is where we are. He is at the cusp of many changes, and how he is defined by society will affect him more and more. I hope that people who get to tune in only occasionally to special needs issues understand how they themselves can either function as the needed safety net or the gravest danger to his future.
What do I mean by this? Many things. But first I shall quote Jack Kahn in The New Inquiry:
“…regimes of surveillance differ depending on a body’s position inside or outside of the national neurology…surveillance comprehends those belonging to the national community through clinical, therapeutic means (as opposed to disciplinary repression) that endeavor to immunize affluent citizens from the imagined danger posed by neural difference…
Autistics often live within positions that demand the recognition of institutions, such as medicine or the state, even while those structures participate actively in those forces which most injure them…The mandate to articulate oneself in neurological terms as well as the legitimacy of the nation-state as an agent of social change remain unquestioned by current social movements addressing neurodiversity.”*
When we accept that how the prevailing system functions to pathologize autistic people is okay, and we place on them and their families alone the burden of accessing those fundamentally problematic services, whose funding constantly threatens to dry up because people think we are a drain on society, AND when autism itself is defined as a ‘scourge’ in the public discourse, inviting the twin responses of avoidance and charity, it is almost inevitable that we and our kids will be put in demeaning situations socially, medically and institutionally.
I am feeling too heartsick to get into personalized examples of what we experience. It will take energy I don’t want to expend right now. I apologize for what must seem like intellectual laziness, but so it is. I’ve learned that I can only put myself out there some of the time, and must accept that limitation in myself.
Maybe today, all I want to say is that being ill made me long for A’s twitchy little presence, and that autism being understood with nuance should not be such a niche thing—people’s willingness to accept the status quo definitions of autism poses a danger to people like A, and society being generally unwilling to examine these assumptions more closely will continue to impact the lives of autistic people and their families.
Till next week, dear readers, I remain coughingly yours,
Kahn, Jack. “On Neuronationalism: Autism, Immunity, Security.” The New Inquiry, 17 March, 2015, https://thenewinquiry.com/on-neuronationalism-autism-immunity-security/
Thank you to Sonalee Rashatwar for sharing the article referenced. It was thought provoking and worthwhile.