I live at the crux of two paradoxes: unschooling with and autism diagnosis, and neurodiversity with an environmental justice focus.
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 autism as an illness. Instead, I am learning more and more about neurodiversity and reading self-advocacy and advice from autistic adults; however, I also feel that health issues often connected to or coincident with autism can be made worse by environmental exposures.
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.
I have often felt alone in these views, that they are controversial enough to alienate most of the people in my life. 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. Yet I wish these kids had the connection that identifying as autistic can bring. 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 hurts. It portrays autism as regrettable instead of something to celebrate. But I still think that research needs to be done on bio-medical and environmental factors that help or hinder autistic people.
So to take on these points: first, I believe in 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 might be helping these kids.
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. Our culture needs to get over it’s fear and vilification 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 find adults’ reflections on what it’s like to have sensory aversions and fear of food without the word “autistic.” 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. I wouldn’t know about the books and therapists that have worked for us so far. And without diagnosis and reading what autistics have to say for themselves, I wouldn’t see the many ways I’ve been trying to squash and overcome autistic challenges and abilities in myself my whole life.
I have absolutely no regrets about diagnosis, it has helped. The only thing I regret about diagnosis is when I let a few of the therapists get to me with their arguments that it’s not sensory overwhelm, it’s defiant behavior and I just need to force her to do things.
Finally, we live in a world where climate change and pollution are out of control. Setting aside the research about what causes autism, some of the best investigative and journalistic work I’ve seen in the last few years has 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.
Most autism research is about causes and points to this nexus of genetic susceptibility and environmental exposure. So, for example, the research claims that the more toxic exposure, the more children will have autism, for example when mothers live nearby farms with intensive pesticide use. What if we took the neurodiversity stance, assume that the number of autistic people is just a fairly stable form of natural diversity, and focused on the environmental factors that make life easier or harder for autistic kids and adults? What if “more autistic kids” in the research on causes actually means “a higher percentage of kids–who would be autistic with or without this exposure–have increased health issues often seen with autism.” Or have increased sensory overwhelm after x,y, and z environmental exposures. What environmental exposures give autistic adults headaches? What foods or forms of nutrition alleviate sensory overwhelm, and which exacerbate it? Do autistic adults have any health symptoms post-vaccination? That research, as far as I know, isn’t being done.
I do agree with many neurodiversity writers that the causes of autism shouldn’t be a parent’s or researcher’s focus anymore and looking at causes gets in the way of seeing the beauty and potential and strength and power of autistic people. Focusing on causes predisposes people to think of autism as something that’s wrong with someone, rather than a part of who they are. Which is why I think research and advocacy should be more informed by the neurodiversity and environmental justice movements, together. Autistic people and families who feel scents and food dyes make life harder can and should be allies with 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 different than identifying a genetic cause of and cure for autism or just trying to “fix” your own kid with dietary changes.
The true crux of my lived paradox is the individualism of unschooling stands in contrast with my desire to be socially engaged and support collective solutions to our common problems. We do education mostly as an individual family unit with internet 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 while comfortably sitting on your couch at home. And the world is not accepting of autistic people or made for autistic people, so I stay home to always be by her side, always facilitate her interactions with the many many people who don’t understand her sensory or communication needs.
But at the same time, I want more collectivism. More support for me in the endless work of raising and educating two kids. More support for the homeschooling families I know struggling to pay rent and put food on the table. More support for the homeschooling families who are Black and Latino and aren’t comfortable at park days among colorblind white people. 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 problems to be erased or charity cases. Juggling so many paradoxes, it’s been quite hard to find supportive community or imagine a collectivity forming around these ideas. But as autistic adults are forming their own supportive communities, often online, their strength allows more families like mine to learn and connect.
*This post has been updated. When originally written, I was still very interested in the causes of autism. I understand more now about the difference between autism as part of neurodiversity and identity, and other symptoms often experienced by autistic people that make life harder. I am in debt to the autistic community for this understanding, particularly all the hard-working admins at “Ask Me, I’m Autistic.” If you also feel indebted to the autistic community, support them financially! Here’s a start: