Rereun alert: I’ll be publishing some (edited) articles from the old blog this week, as I re-adjust to the schedule of working. I hope some of you who missed these will enjoy.
This post was written in honor of World Autism Awareness and Acceptance Day. Photos taken at Camp Royall, currently the only camp in North Carolina run by the Autism Society of NC. Three more camps are in the works!
To be nobody but
yourself in a world
which is doing its best day and night to make you like
everybody else means to fight the hardest battle
which any human being can fight and never stop fighting.
A variety of reading and events have compelled me to rethink my attitude toward Henry. Toward my parenting of him. Toward therapy. Toward organizations. Toward metaphors.
What good is therapy if we’re only making our children fit into boxes we created from our own expectations?
If someone compliments “how far he has come,” what are they really saying? Are we actually helping autistic people become more fully who they are, or are we asking them to be more fully like us?
Jess Wilson posted the above poem on her blog. And she asked this:
“What is it doing to the kid who has come so far in learning to disguise who he is – to hide in plain sight, to stuff and squelch and refrain and restrain and be enough like ‘us’ to no longer feel worthy of a life lived as herself?”
Her question struck me so deeply, so profoundly. Lest it be confusing, let me say I don’t think she’s condoning behavior that is hurtful or spiteful. For example, I think it’s important to teach Henry not to hit people when he’s anxious. But I do think she’s saying (and this is echoed by autistic adults) that we do damage when we tell kids (even restrain kids – don’t get me started) they can’t stim or can’t fixate or fill in the blank; in other words, it’s immoral to strip away what makes them them.
I’m reading an anthology of essays written by autistics and published by The Autistic Self Advocacy Network. It’s called Loud Hands: Autistic People, Speaking. Don’t you love that title?
The theme I see most clearly running through this anthology is this: We are not broken.
The many essays written here point to a truth that most of us – neurotypicals, that is – can’t wrap our heads around, though we can certainly try. The truth is that many (all?) autistic adults don’t wish to be neurotypical. They like their way of seeing the world. They like the way they communicate. And they don’t like the fact that the rest of the world usually puts the burden on them to adapt to typical communication, when the world could do more to understand and adapt to neurodiversity.
This doesn’t mean they don’t want to understand us; it means they want us to also understand them. Read that again. It’s important.
One of the contributing authors to Loud Hands, Ari Ne’eman, writes,
“It is without a doubt true that autistic people across the lifespan face much more difficulty in many spheres of life. Yet, at the same time, the autism spectrum is inclusive of more than a series of impairments; many of the traits we possess can be, in the proper contexts, strengths or at least neutral attributes. For many of us, the prospect of cure and normalization denies essential aspects of our identity. The autism spectrum is defined as ‘pervasive’ for a reason; while it does not represent the totality of what makes us who we are, it is indeed a significant part of us, and to pursue normalization instead of quality of life forces us into a struggle against ourselves” (91).
Autistic adults, via various modes of communication, are pleading: Don’t speak for us.
They are not broken. They are not incapable. They are not sick. They are not a fate worse than death. They are not behind an impenetrable wall. They are not trapped inside a locked box.
I’m pondering. I already ceased my support of Autism Speaks, but what more can I do? How can I help Henry become more fully Henry? How much does he really need to do and to learn to be successful and happy in this world, and how much does the rest of the world need to do to accept him?
I’m learning that looking in the eye may be a social construct for neurotypicals, but it doesn’t have to be.
Communication is often verbal, but not always.
Repetitive behaviors may not be typical behavior for us, but it is for them.
This new thought process is the epitome of splitting hairs. It causes us to consider what is good, functional behavior and what is inhibitive, even unhealthy behavior. These aren’t easy questions to answer, but they must be asked, because hundreds of thousands of people are worth the effort.
Ask me how I know.