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 against Autism 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 autism, the day-to-day difficulties are the same. I don’t pretend that my son’s autism is the same as my brother’s autism. I don’t fool myself, that my home life (which is pretty darn smooth, thank you very much) compares to parents who have children with more severe versions of ASD. I thank the gods that diagnosis and treatment options have improved since my childhood. I don’t want a “cure” for my son, I like him as he is, but I also respect that other autism families may feel differently. If it’s because they have rigid ideas about what their child should be, I urge them to give that up. But, if like myself, they see pain and suffering and experience pain and suffering, I’m not going to tell them wanting a cure is wrong.

I do suspect a cure may not be feasible. Since autism is a spectrum, it may well prove to be like cancer, not subject to one line of treatment (e.g. a “cure”). In the meantime, both the posts above point to supporting organization that help out locally providing direct support services. In Sacramento, I received invaluable assistance from FEAT (Families for Early Autism Treatment). We also have the MIND Institute which does both research, and provides more hands-on services. I’ve been attending meetings for the Center for Excellence in Development Disabilities and my son has found the information provided about college, jobs and housing to be useful.