In February it will be a year since Liam was diagnosed with autism and 18 months since we started EI. We’ve had one developmental therapist, five speech therapists, and three occupational therapists. We’ve had at least ten separate evaluations for EI, speech, OT, “the diagnosis”, IEP, neuro, and then speech and OT again. There are more to come.
Just after Courtney and I confronted the then frightening reality that we needed help to help Liam The Brave but before we unknowingly threw ourselves into the journey of a lifetime, I remember thinking, well, we’ll hit these therapies hard for a year and get everything sorted out before preschool. In retrospect, my naivety seems so silly, so hopeful, so clearly a coping mechanism. There was just too much to process, too many terms to learn, too many damn forms to sign, to come to grips with what was increasingly obvious: this was just our life now. This is who Liam is. Liam isn’t sick. He’s not broken and we’re not trying to fix him. Liam is autistic. He just is.
Even now, though, I catch myself thinking versions of that old thought with new benchmarks: kindergarten, middle school, high school, college, marriage, etc. Oddly, or perhaps not, the ongoing criticism of Autism Speaks that sparked the flash blog and hashtag #thisisautism is helping me move past the belief that Liam’s autism will go away.
There’s an increasing amount of criticism tossed at Autism Speaks, probably the highest profile autism organization. You can read about that criticism in detail here and here. The gist, however, is that autistic folks don’t like that Autism Speaks has no high ranking employees or board members who are themselves autistic; they also don’t like the way that the organization portrays autistic people to the world: as lost, missing, disappearing, ill, or in need of rescue; further, they dislike like that it’s a cure organization which, if successful, would end autism. I’m still sorting out what I think about this controversy (Like in most things, I don’t think we can account for a large and complex issue in overly simple ways like saying “Autism Speaks hates autistic people.” That seems too simple to be true. I also think there’s probably some good cultural studies work to be done here on observing how groups adopt the perspectives of disability studies as they develop and grow. That’s another matter for another day in another blog.), but reading and re-reading the #thisisautism feed taught me something:
Some people are autistic. They just are. And Liam the Brave is one of them.
Of course Liam needs support and individualized attention to grow and learn in ways that some his neurotypical peers don’t. We have lots of work to do to teach Liam to communicate effectively, to navigate social relationships, and manage his sensory needs. But that’s utterly besides the larger point. The point is, as I tweeted last week, that
It’s taken me these 18 months to really understand and appreciate what that means. Liam is much more than his autism–he’s a son, brother, grandson, nephew, friend, student of the week, a lover-not-a-fighter, a comedian, a mischievous little bugger, and my apple-eating superhero. But he’s also autistic each and every time he inhabits these roles. I love my son because of his autism, not despite it.
Which is precisely what Tim Tucker meant when he this wrote last week:
Dear Autism Speaks:
My child is not missing. He is right here. I just put him to bed a few minutes ago.
Nighttime is one of our most precious times together. I sing his favorite songs and say our ‘nighttime words’. Some may call it a script; I call it a holy liturgy.
When I am done, he gives me a quick kiss. Maybe he will go to sleep soon after; maybe he won’t. But I am there, and he is there with me. And neither of us are lost.
Follow Matt on Twitter @asd_dadvocate