by Jessica Ashley
For a long time, I’ve felt compelled but put off writing about autism. I haven’t done this because I in any way disregard the relevance or sensitivity or critical nature of autism in the world we live in right now. I’ve done it because, frankly, I am scared of it. Autism frightens me.
I’m not afraid of children with autism or learning about autism or discussing autism. As hard as it is to admit, I have been nervous to let autism enter into my writing just as I have been nervous it would invade my home. That’s why, when I read this moving and forthright article by Julie Deardorff in the Chicago Tribune, I felt called to finally put autism at the center of my screen.
Deardorff’s look at autism isn’t about vaccines or supplements or diets, the controversy and conversation we have become used to hearing in the last few years whenever autism is mentioned in the media. Rather, it is about whether or not autism is treatable at all, and whether we should embrace all that autism brings instead of seeking a cure that will halt its symptoms.
The arguments on either side are fascinating and passionate. But then, I don’t have a child with autism and I am not a person who lives within the spectrum of its “disorders.” This place, where I’ve stepped back in fear, is where Deardorff pulls me in.
She begins it all eloquently, evocatively, speaking straight to what gripped me and I am sure grips many parents who study their children for smiles and hugs and how they relate to anyone, everything around them in the early years:
One of my greatest fears is that autism will break into my house and steal my son. It may be irrational, but it’s there: He’ll wake up one morning and vacantly look through me. He’ll lose his words, open and close doors for three hours, or begin screaming, as if in pain.
Then, bam! The child I know and desperately love will disappear into a mysterious world where I can’t reach him.
She continues on to note that, “[t]o some parents, kidnapping is a near-perfect metaphor to describe the agony of autism,” and I imagine you’ve heard many of these parents lobby and argue and rally passionately on behalf of their children. I imagine you’ve seen them on Oprah taking a stand against vaccines and promoting gluten-free diets (like Jenny McCarthy, now as well known for her entertainment resume as her autism awareness), you can hear that passion and commitment and sometimes, desperation.
Maybe that’s what is scary as well as hopeful — what can be involved in caring for an autistic child, what some parents have to go through just to get a diagnosis or therapy or the help they need. It is overwhelming.
This is also why it is scary and hopeful to debate whether recovery is necessary at all for people who are autistic. Most of us are probably most familiar with the race toward recovery — from alternative treatments to day therapy programs to diets — that we’ve known families who participate in or raise money for or that we’ve just seen on a news magazine show. But there is also, as Deardorff points out, growing support for what is referred to as the “neurodiversity movement.”
The neurodiversity movement advocates embracing the unique thinking and ways of being associated with autism rather than seeking a cure or referring to it as a disorder. It’s no surprise that, while sounding idyllic, it is controversial, particularly among some parents of kids who are unable to live independently, low-functioning or highly removed from human-to-human connection.
Whereas someone high-functioning or on the Asperger’s end of the autism spectrum might not want to “cure” the way their brain works differently than other people, Deardorff and others say that this only tells one part of the autism story. Just like diet or other treatments may not lead one kid into “recovery” from the ways his autism manifests, accepting (let alone embracing) neurodiversity and all it means may not work for every family.
What helps my fear — and I wonder if this is true for any of you — is that the talk around autism is building and that how and what and why we discuss it is widening. There’s clearly much more to be learned, and as a mother, I hope that there are one day many more choices for parents of children with autism and for those kids as they grow into adults.
Until then, I hope we all can keep talking (and writing) honestly when autism is the topic of conversation. It may not alleviate all the fear but it sure can help with the hope part.
A Quick Review:
What are your thoughts on the neurodiversity movement? Is recovery necessary for everyone with autism?
I think it is great that people are accepting people with autism and talking about it more. For people with Asperger’s I can understand the neurodiversity movement because most of them are so much high functioning than kids with just regular autism. My cousin is Autistic, he can’t talk, he can’t take care of himself, he’s almost 5 and they can’t get him potty trained. Something NEEDS to be done about this. For him it is not about being diverse and about thinking differently. For his parents it is like he is ‘kidnapped’ they need help. It is not about thinking differently for him it is about being about to live and function enough to speak and take care of himself. What about those kids? I think they deserve prevention or a cure. Jakob deserves better and as much help as he can get and so do so many kids out there.