What Autism Means in My Family
It’s Autism Awareness Week. Just so you’re aware, I have autism in my family.
Apparently there is some controversy in autism, centering around who speaks for the autism community. Since I’m the adult in the house with a blog, I’ve been the one speaking about autism in our family. My being more neuro-typical certainly advantages me in this, but I also say more about it than my super-social-savvy spouse. As with most of my autism posts which cite my son, I’ll be running it past him for approval. My son is at the point of his development where he can speak for himself, and I’m hoping he will do more of that. I think this is a good thing. It is the rising number of verbal and communicative folks with ASD (autism spectrum disorder) that have really brought up this issue, which is healthy. Anyway, this growing need to speak for themselves has lead to backlash againstAutism Speaks, the largest autism advocacy/charity group. The arguments are probably best articulated by the folks with this complaint, but center around a couple of things, who speaks for the autistic community, and what should the goal of a group formed to address this issue be? Specifically, does autism need a “cure”? Some folks still want a fix, and are not happy that Autism Speaks is now talking about accepting autism as a gift.
I think I’m in a unique position, because in addition to having a fairly well-adjusted son with ASD, I grew up with a brother with classic, non-verbal autism. I don’t talk as much about him because he really can’t give consent as my son can, but I’m going to talk about why some families might want a cure, and others resent that idea. My brother was born in the mid-1970s when the “refrigerator-mom” theory of autism was dying a well-deserved death, but nothing new had really taken its place. No one knew what to do. There was little in the way of treatment or therapy at the time. He was clearly “different” from a very young age (I remember thinking something was “off” when he was 6 months old, and I was only 9 at the time), but he was a beautiful, physically healthy baby. I saw my brother last Spring. He speaks in monosyllables. The best thing for me is that he seems happy because most of my memories of him, are not about a happy child, and the few times when he was happy, everyone else was very frustrated because it involved behavior like emptying every single bottle of shampoo down the bathtub, etc. Every adult in the family wanted a “cure” for my brother. As I got older, I wished he could have one because he was so frustrated, and angry.
While I understand concerns about trying to “mold” those with ASD into being neuro-typical, and concerns about language and behavior towards ASD individuals by families and Autism Speaks that is dehumanizing, I also know how frustrating it is to live with a severe, non-verbal person with autism. I also know that having mild-to-moderate ASD and raising a kiddo with that, is a whole different ball of wax than what my parents went through. Although many things have changed since the dark ages of Reflections on Teaching » Blog Archive » What Autism Means in My Family: