Seeking the Full Spectrum of Perspectives

The neurodiversity movement and the non-autistic parents need each other.

Psychology Today, January 31, 2019

I experienced an almost miraculous moment as an autism mom about eleven years ago when I attended my first meeting of ASAN, the Autistic Self Advocacy Network. Surrounded by autistic adults, all of whom could speak or communicate in other ways, I searched for someone who seemed like Nat. Halfway through the meeting, a very soft-spoken and sweet person started talking to me about how I raised Nat. All of a sudden, in the middle of talking, this young person held up their hand and started flapping it and became lost in its motion. And my heart just broke open, for I finally recognized someone like Nat. Even though this person could converse so fluidly and interact with me in ways that Nat never had, here, at last, was the very same autistic behavior. The two opposite ends of the autism spectrum collided in my heart, closing a loop, like neurons forging a new neural pathway. Nat was part of a continuum, a viable member of a politically conscious community. It both comforted and electrified me.

It was at that meeting that I heard the concept of the “neurodiversity paradigm” and the “neurodiversity movement” for the first time, and I fell in love with it. The neurodiversity paradigm, defined here by autistic advocate Nick Walker, celebrates and acknowledges the diversity of brains and minds, and that such diversity, like autism, is a natural, healthy, and valuable form of human diversity. (Walker mentions other important aspects of the neurodiversity paradigm, but for simplicity’s sake, I’m just giving you the link.) Walker further defines the neurodiversity movement that is based on the neurodiversity paradigm: “a social justice movement that seeks civil rights, equality, respect, and full societal inclusion for the neurodivergent.”

The ASAN attendees that day told me to bring Nat to a future meeting, and I did. During the meeting, Nat was talking to himself in his singsong made-up language, and the others at the table noticed. Some tried to interpret what he was saying. It was all very kind, but I felt something was off; I knew by then some of what Nat’s words meant, and I knew these others were incorrect. I didn’t want to tell them, though. Nat and I went home and we both kept our thoughts to ourselves. I didn’t bring him back; he communicated that he didn’t want to go. Still, ever since then, that group of people and so many more autistics consider themselves Nat’s friends. They feel that they understand them, and even if they don’t literally understand him, they get him. To this mom, there is nothing else like that in the world, that sort of unconditional love they feel for Nat.

Eleven years later, like all social movements, the neurodiversity movement has begun to refine itself, to define its missions, and to categorize issues and identities. Lines are being drawn, hostilities are emerging. Sometimes it feels like the autistics versus the parents: who gets to speak for whom. Is blogging with all your heart an abuse of your autistic child’s privacy, if he doesn’t even know what you’re saying? Even so, it matters, and the neurodiversity movement answers. But doesn’t it also matter that the parents help each other get through their hard times and learn from each other?

Yes. Both sides matter.

The truth is we all need each other. We must have the voice of the autism community heard by policymakers and the general public. And as for the non-autistic parents, I believe that for the most part chronicling parents’ struggles with autism is about offering hope and help. Parent bloggers like me are seeking to pass on the wonderful support and education we received from other parents and autistics back when we most needed it. I believe that non-autistic parent writers (like Patheos blogger and autism mom Dilshad D. Ali who describes all the love and care and heartbreak in parenting an autistic child) are mostly doing good, trying to inspire and educate parents struggling with how best to raise their autistic children. They are acknowledging their truth, that there is still not enough research on how best to educate and help their children learn independence, safety, and other challenges brought on by the manifestations of autism. Dealing effectively with a child’s autism is heartbreakingly difficult, and we need to help each other parent effectively.

Currently, the politically active neurodiversity movement seeks to redefine the conversation about autism, to de-pathologize it, see it only as a difference, a political minority, as a platform for discussing disability rights. They don’t want the conversation to be so negative, even if there are negative experiences in parenting an autistic person, because it damages society’s view of them. They also want to be the best authority on autism, as this comment to National Council of Severe Autism board member Amy S.F. Lutz illustrates. Rightly so. But in doing so, they must take care not to invalidate the parents’ and even the severe autistics’ very real struggles, like the way one neurodivergent Twitter user sniped at me, something like this: “Let me guess, you’re an autism mom. You make money writing about your son,” and so on as if that were a crime.

Sneering at a parent’s honest writing is one thing, but when the neurodiversity movement emphasizes that autism is merely a neurological difference and not a hardship—other than anxiety or sensory issues, for example—you’re giving a lopsided view of autism and silencing the reality of an entire group of people. Lutz contends that “most autism narratives cherry pick the savants, the computer geeks, and the quirky kids” and exclude those like her son (and mine) whose communication and intellectual abilities are highly impaired. In effect, people like my son end up excluded, from research to political conversations about how autistics should live (which is a whole other essay). These important issues are in fact, reasons why the NCSA was founded: to give the severe autistic perspective a seat at the political table. If a severe autistic person cannot communicate effectively for himself, then the parent liaison/translator should be welcome next to him at that table, or even without him if the severity of the autism prevents his attending.

I am calling for balance and connection on both sides, and more compassion. Thankfully, I see a lot of helpful and supportive people out there, Spectrum or not. In the end, for the societal perception of autism to be accurate, and for public policy to reflect that, the full Spectrum’s reality must be presented. We must read broadly and deeply—take what we need, leave the rest—of both the parent bloggers’ and the neurodiversity movement’s perspectives. If we are to move awareness forward to the next paradigm, to inclusion and accommodation, then all those touched by autism must be able to safely air their stories.