31 Days of Parenting Kiddos with Special Needs: Autism Speaks

31 Days of Parenting Kiddos with Special Needs

You know how I blogged on information literacy last week? (You didn’t read it? Go read it now. I’ll wait.) Well… I have an example of it now.

The website that is given out to every parent that gets an autism diagnosis for their kiddo is Autism Speaks. They’re the most vocal organization out there of all the resources on autism, they sponsor walks to raise money for research, and they’re all about managing autism/finding a cure etc. I was too shell-shocked to really read up on it when Daniel was diagnosed and instead focused more on learning about ABA because it was a way of working with him that seemed to reach him in ways that other things didn’t.

One small problem with the site: it’s run by neurotypical people and is aimed at making autistic people more like those who are neurotypical.

The problem with this: People with autism AREN’T neurotypical. It would be like putting someone in a room with speakers going at full volume with a million different sounds and then expecting them to carry out their life as normal. IT’S NOT THE WAY OUR BRAINS WORK!!!

A big problem that I have is that people act like autism is a deadly disease and that it’s incompatible with life. Seriously, I’m high-functioning (which we discovered AFTER Daniel was diagnosed) and my life is fine. Do I have to find ways to adapt to the world? Yes. I go into hiding after having to be social for an extended period of time and I tend to hyper-focus. I also have always taken what people say very literally and had to learn to distinguish between reality and hyperbole. Is my brain useful in this world? It is. I think my brain functioning in a slightly different way means that I have a way of seeing things and analyzing things that helps me and which can other people. Would it be that way if I wasn’t on the spectrum? No, and I think it would be boring.

After finding out what the signs for autism in girls are and discovering that I fit them, I changed my viewpoint quite a bit. Rather than hoping that ABA and other therapies would “fix” Daniel, I started thinking about what would help him to live in the world being the person God made him to be. I also eventually (like a month ago) stopped feeling like Daniel’s autism was a failure on my part. (And yes, I had been made to feel that way by a lot of people.)

Daniel never stopped being the kid he “used to be” — he has always been himself and will always be the kid he is. Instead, I need to work on myself and my expectations. I found this to be the case when I met with his teacher and two of his therapists today for my “fall family meeting” (a fancy-schmancy name for a parent-teacher conference) and they talked about how much a sweetie pie he was, how he interacts, how he participates so well, and just how much they love him. I used to freak out about him staying at grade level and now I’m more concerned with making sure that he learns to be kind and have made peace with him being whoever he ends up being as a student. (Kiddo *LOVES* school so I’m pretty sure he’ll catch up eventually.)

So how exactly does information literacy fit in? Well, they tell you to look at bias, manipulation, etc. as a means of determining which sources are more authoritative. Autism Speaks doesn’t (or at least didn’t for a while) have any autistic people on their board of directors or really in any high-up part of the organization which is a bit weird for an organization that purports to speak authoritatively on a condition.

I asked my dear friend Anita for an alternative and she recommended the Autistic Self-Advocacy Network instead.