The author of this post is Jess, who can be found at Diary of a Mom. There she writes about life with her husband Luau* and their beautiful daughters – Katie*, an utterly fabulous typically a-typical eleven-year-old, and nine-year-old, Brooke*, a loving, talented, hilarious fourth grader who has autism. This was originally posted there.
My daughter is doing well. The beginning of her fifth grade year has been smoother than I ever could have hoped. Yeah, I know I’m tempting fate by saying it out loud. Screw it. I’m shouting from the mountaintops — MY KID IS DOING WELL.
Her language is blossoming.
She asks questions about her environment. She asks what things mean. She asks, “How did that happen?” and even, sometimes, “Why did that happen?”
She is engaging with others and finding ways to make herself understood. Her conversation is sounding more and more natural — less forced, less scripted. OUR language as a family is following suit.
We are more relaxed. We are less afraid to venture out, to go to new places, to try new things. It doesn’t always work. Sometimes we go down in flames. But it’s getting easier to try.
And people are noticing. Both here on the blog and in our live-and-in-the-flesh life. They are seeing the tremendous strides she’s making and offering up praise and commentary. In some cases, what they’re offering is some really kindly intended yet wildly inaccurate assessments of her progress that they have no idea are serving to perpetuate some dangerous myths about autism. And I need to address them.
This is what I’ve heard.
“What an incredible recovery!”
To recover is to regain something that was lost or to heal, as from a disease.
My daughter has done neither. While she regresses periodically due to dysregulation from stress, she does not have Regressive Autism. She did not lose novel speech at a certain age; she never had it. Instead, she has, over the years, been finding access to it, creating pathways, learning to translate her thoughts into words, essentially becoming fluent in a foreign language, step by step by purposeful, painstaking step. As she broadens her ability to communicate her needs, she is able to more effectively manage most of the other challenges that autism presents for her.
She does not have a disease from which her body is healing. She does not have gut problems nor an overload of heavy metal in her system. She does not have anything that time in a hyperbaric oxygen chamber is going to ‘fix.’ My daughter isn’t sick.
Her brain is wired differently than the average bear. It just is. As such, her development is not linear. It’s not simply a slower journey along a prescribed path. Instead, it’s a walk down a whole different road that’s really not a line at all, but a prism – a constellation of challenges and talents that make her who she is.
I’ll say it again. My child is not sick.
The word “recovery” is not remotely applicable to her progress.
“She is kicking autism’s ass.”
No, she’s not.
Autism is not cancer. Autism is not something that we are working to excise from her body. Autism is part of the framework of who she is. I’ve said this too many times to count, but I’ll say it again: Autism is pervasive. It’s right there in the definition – Pervasive Developmental Disorder. That means that it pervades EVERYTHING she sees and tastes and hears and smells and feels and processes and, yes, thinks. Everything that she interacts with, everything she experiences passes through the filter of a brain wired by autism. As such, kicking its ass means kicking HER ass. It doesn’t make sense.
I heard a story at a conference I attended a couple of years ago about a young man who put a gun to his head. A therapist had thought that some off-the-cuff CBT (Cognitive Behavior Therapy) might help him understand his challenges, so she told him that his autism was a ‘bad guy’ in his head who wasn’t letting the ‘good guy’ (presumably his nonexistent “non-autistic” brain) do the things it needed to do.
So he put a gun to his head.
Because as a literal thinker, he thought it would be a good way to “kill” the bad guy who wasn’t letting the good guy do his work.
The ‘bad guy’ was his brain. His brain was him. Killing the bad guy would mean killing himself.
You can’t tell someone to separate how they exist from who they are.
It doesn’t work.
It’s not real.
He put a gun to his head to kill the autism.
So telling my kid that she’s kicking autism’s ass because she’s doing well?
My daughter is kicking ass, period. She’s learning and growing and finding her way in a world that autism complicates for her. She’s learning to mitigate the challenges that it presents by leveraging the strengths that it also offers. She’s learning what she needs in order to do both and, even better, finding ways to ask for it. She is growing and changing and progressing. Skills are coming together as she collects the tools that she needs to grab this world by the balls and make it work for her.
Oh, and we’re getting better at helping her to do all of that. Which is pretty nifty too.
“Wow, she’s really emerging from autism.”
No, she’s not.
With all due respect to Dr Grandin, I’ve never liked the word “emergence” as it relates to autism. I find it presumptuous. As though until you can present yourself in a way that enables the rest of the world to see who you are, you aren’t.
What she is doing is self-actualizing. As an incredible human being. One who is funny and loving and, despite some tough stuff, happy far more often than not. One who is engaging and funny and yeah, I know I said funny already, but seriously, the kid is funny. One who is imaginative and creative and may take some extra time to process stuff, but is nonetheless smart as a whip in her own ways. One who is teaching me far, far more than I can ever hope to teach her.
One who is, and always will be, autistic.
My daughter is making incredible progress.
In becoming exactly who she is.
And I couldn’t be more proud of her.