For the last few days, there has been an interesting discussion over on another blog I contribute to, Autism Sucks. I won't recap the entire debate, but there was a recent post about a poop-related incident at a public pool. It is a great post, illustrating the type of thing parents of autistic kids have to deal with every day. It also touched upon how siblings are affected, a topic near and dear to my heart.
Amid the many supportive comments was a dissenting voice, a teenager, Kathryn, who has autism. She made the argument that since you can't separate the qualities of autism from the qualities of the person, when you say "autism sucks" you are saying the person sucks. If you didn't click above, I'd suggest you go read the initial post and the comments here.
I wanted to post my views on this as well, but since there is already an amazing rebuttal on the site, I thought I'd discuss them here. I agree with the arguments made in the many comments, so I don't want to rehash those here. But I do have a few things to add.
Kathryn says that autism is less like a disease like cancer and more like being blind or deaf. Is she saying that if she had a blind child, she wouldn't want him to see all of the beautiful things in the world if given the chance? If your child was deaf, wouldn't you want him to be able to hear music, birds singing, or your own voice? If you're not sure, I'd suggest watching this video of a baby having his cochlear implant turned on.
There is so much I love about Moe. He is affectionate and has the greatest laugh. He has a capacity for showing pure joy when he's doing something he loves. He is a wonderful problem solver. But yes, if I had the chance, I would take away his autism. I truly believe that his disability is covering up so much talent that is hidden under his autism shell. Autism is not like shyness, or not being good at math. It is a fundamental disability, a social blindness. If I could give him an implant that could help him communicate, ease his frustrations, or make it easier for him to show the world all that he is capable of, you bet your ass I would. I'd give just about anything to make that happen.
Kathryn notes that autism isn't a death sentence, and that many talented people didn't speak until they were much older, including the amazing Temple Grandin. It's true, and it is hard to say if Ms. Grandin would have her incredible talents if she didn't have autism. Probably not. And so I understand the argument that if you were to "cure" autism, you are fundamentally changing that person. But look at another prominent member of the autism community, John Elder Robison. He is working very hard to understand the causes of autism and even undergoing a kind of electromagnetic brain therapy as part of a research study. He describes one session after which he suddenly had insight into people and emotions that he never had before. He writes in his blog, "Turning on the ability to see into other people overnight is, as I describe in the video, one of the most powerful emotional experiences of my life."
At the same time, he recognizes that:
If much of my life is defined by autism, and autism is a terrible thing, how do you think I will feel about myself? I ended up in special classes because I am autistic. I flunked out because I am autistic. I already know I am disadvantaged with respect to others who are not autistic. I don’t need more stuff to feel bad about.
I want useful help. I want to learn how to hold a conversation, how to make a friend, how to get a job. Practical skills are what I need, not moral judgments.
I am a huge fan of Robison's, and the rest of this post on neurodiversity and a cure can be found here. It is a useful perspective, but we, as parents, are looking at this from the other side. We want to provide that useful help, but don't always know how to. We hate to see our children suffering through a tantrum, but often have no way to know how to fix the problem. We are judged by others, and even though we shouldn't care, it hurts because we have tremendous guilt. We feel deprived of the small things that other parents get to take for granted, like their child running up to them after school or hearing their voice call you "Mommy." We feel isolated when we spend our weeks and months taking our kids to therapy instead of going to playdates, and the playdates we do make it to we spend making sure our kids don't run off rather than having any chance to be social. So yes it sucks. I love Moe with all my heart, but I'm not going to pretend that it isn't a tremendous challenge every single day.
For a more powerful rebuttal post, read Response to Kathryn's Comment, written by a mom of two sons with autism.