This post has sat with my for a long time. I live at the crux of two paradoxes. First, I unschool and believe all children are passionate learners and should learn however they want, and I trust that they will learn what they need to learn in life; however, I also feel that “labeling” autism is a helpful guide in understanding my child’s learning process and needs. Second, I don’t see the label as a bad thing at all. Instead, I am passionately learning more and more about neurodiversity and reading self-advocacy and advice from autistic adults; however, I also feel that autism can be (but is not always) the result of pollution or toxins in the environment of the child or mother.
So I don’t send my daughter to school, I let her take the lead and thrive in her own ways even as I research what it means to be autistic, what her experiences might be, what sensory tools and therapies might help her, what biological health tools might help her, and what measures we can take to reduce toxins in the environment and prevent the ever-increasing numbers of autistic kids.
Everything I’ve just said is incredibly controversial. Unschooling is controversial. Not using early intervention and ABA (applied behavior analysis) on a young autistic kid is controversial. That’s just to start. Then, I read the work of many unschooling parents who describe their children and I keep thinking “that kid is austistic!” But these parents passionately argue that without school you don’t need labels and can just let your kid be themselves. Finally, I read the work of many autistic self-advocates and neurodiversity writers who argue that focusing on causes and treating autism like a disease always means that you are telling autistic people there is something wrong with them.
So to take on these points: first, I believe in facilitating and offering enriching opportunities for play and self-directed education: I believe in unschooling. Next, I strongly agree with many autistic adults that ABA encourages compliance and conformity for the primary purpose of erasing outward signs of autism and making someone seem “normal” and “fit in.” And I agree that it’s damaging to a kids’ self-esteem, independence, and spirit. I used to be an ABA therapist, and I declined to continue because it was the most depressing work I have ever done, even when at the time I thought I was helping these kids. I am still exploring what therapy options may be positive and something we can get covered or afford. Furthermore, I believe that there isn’t anything wrong with my autistic kid, there is something wrong with the world that people cannot handle stimming, sensory sensitivity, intensive interests, and social difficulties. There are at least 1 in 68 kids with autism, and our culture needs to get over it’s fear and villification of difference and accept that someone may need to stim while they play or talk or work or learn but they are still every bit and sometimes more capable of living a fulfilling life as an allistic person.
Next: I think the label helps. Because a label is an organizing tool. It’s a research tool. It’s a community building tool. You can’t have the Autistic Women’s Network or the Autistic Self-Advocacy Network–and all the work they do to write, to learn, to teach, to advocate–without the “label” autistic. And I think it helps at the personal level both for the individual and the parent. I can’t read adults reflections on what it’s like to have sensory aversions and fear of food without the word “autistic,” or at least it would be a lot harder to find stories that I can apply to my daughter’s experience. I wouldn’t know that joint compression and rolling like a burrito and platform swings you can lay down on all help so much without the diagnosis of autism and the books and therapists that have worked for us so far. I have absolutely no regrets about diagnosis, it has helped. The only thing I regret is when I let a few of the therapists get to me angry with their arguments that it’s not sensory overwhelm, it’s defiant behavior and I just need to make her do things.
Finally, we live in a world where climate change and pollution are out of control. Setting aside the topic of what causes autism, some of the best investigative and journalistic work I’ve seen in the last few years have been about health, the environment, and environmental justice. Like this article about PFOA and Teflon. Or Sandra Steingraber’s work–motivated in part by surviving cancer–on arsenic in children’s playgrounds, PVC toxicity and manufacturing risks, and fracking. We are poisoning ourselves because profit matters more culturally and politically than long-term health. Environmental justice is a core issue in our current world. And autism, I believe, is part of this issue. The toxic tipping point of each pregnant mother and each infant may be genetically determined and individually variable, but there is a tipping point where certain toxins affect brain development. Most autism research points to this nexus of genetic susceptibility and environmental exposure. So that the more toxic exposure, the more children will have autism, for example when mothers live nearby farms with intensive pesticide use. Although it is terrifyingly controversial, there are many reasons to believe that a particular person’s tipping point, their body’s inability to process such environmental chemicals also triggers immune system overstimulation and can be reached because of their inability to process aluminum in vaccines. I believe this topic is worth researching and the causes of autism are urgent. There is an increase in autism not explained by genetics, increased diagnosis, or evolutionary neurodiversity, an increase that is more about what is happening in our enviornment.
I do, if not agree than at least support or align, with many neurodiversity writers that the causes of autism do not need to be a parent’s primary focus and sometimes get in the way of seeing the beauty and potential and strength and power of autistic people. Focusing on causes does predispose people to think of autism as something that’s wrong with someone, rather than a beautiful part of who they are. Which is why I think research and advocacy around causes should be more informed by the environmental justice movement. Autism parents need to learn to be allies to their kids and allies to the kids of Flint, Michigan and many small towns around the country who have lead poisoning, for example. All of these families should be united in strengthening the EPA and fighting for more regulations of and research on toxins in our environment. This is a vastly different personal and political stance than identifying a genetic cause of and cure for autism.
The true crux of my lived paradox is the individualism and privatization of unschooling in a way that enriches–rather than strains–my autistic child in contrast with my desire to be socially engaged and support collective solutions to our common problems. I do all the work of her education myself because there is no school–not even a democratic school–where you can wake up late and learn how to do logical circuits in Super Mario Maker in the same clothes you wore yesterday without brushing your hair for days on end. So I facilitate this learning by staying home and doing her education myself. And the world is not accepting of her or made for her, so I stay home to always be by her side, always facilitate her interaction with the many many people (almost every single person) who doesn’t understand her sensory or communication needs. But at the same time, I want more collectivity. More support for me in the endless work of raising and educating two kids. More support for public education and more support for parents fighting for their kid’s IEP. More regulation of pollution, more research on health. More research on how autistic adults can thrive as full people, not charity cases. Juggling so many paradoxes, it’s quite hard to find supportive community or imagine a collectivity forming around these ideas. But I keep trying.