I didn’t know anything about autism, until I knew that my child was autistic. Though I started googling hand flapping when he was six months old, our GP laughed when I mentioned it, telling me that just one idiosyncrasy meant little in the scheme of things. I was ashamed of those YouTube videos that I pored over, how closely I studied the autistic toddlers flapping their arms; they didn’t look like my baby with his softly folding hands. I couldn’t shake it though, this feeling that maybe I wasn’t getting the full picture of my son, that I needed to stand somewhere else before I could gain full perspective.
I was pregnant with our daughter when I first voiced my concerns to anyone else. I had been looking at checklists of red flags for autism, and mentally ticking off more than anyone could explain away. Still it came as a shock when our maternal child health nurse agreed with me that further investigation was warranted. She handed me the brochure for the National Disability Insurance Scheme, and the necessary leap between my disquiet and the word disability made me weep all the way to the grocery store and down every aisle.
Now I know more about autism than your average GP, but the things that we know, the things like language delay, night waking, specialist schools, are not the hardest things. All of these are quantifiable, in their way. It’s the things that we don’t know that are hardest: Will he be bullied, will anyone take advantage of him, will he ever get to fall in love, will he be alright after we are gone, will he be mistreated or abused?
Disability is not a word that bothers me anymore; it is a signifier of my child’s tribe, of the power that can be possible in owning your sense of self with pride. When I saw disability activist Stella Young’s TED talk about the social model of disability, I began to understand things more clearly, that disabled people are stymied not by the disorders that make them different to others, but by the society that sees them as separate to themselves.
I know about autism. Autism and my son are inseparable. The society that we live in tells us that what makes disabled people different is their deficits, but I don’t see my child in terms of deficits, and I don’t see why the world at large should either. This is a complex discourse that has long been fought by, and on behalf of, other diversities, such as skin color or socioeconomic background — but we need also to look forward to the day when everyone else knows disability for what it is: something that makes people the same, as well as different. When that day comes, knowing that, I won’t need to be afraid of leaving my child in the world without me.
Dani Netherclift lives in Geelong, Australia, with her husband, two pre-school children and a Maine Coon cat. Last year, Dani returned to university to study writing after a twenty year hiatus. She currently writes a blog called Sand Has No Home and has just finished the first draft of her very first novel.
Words: Dani Netherclift