November 19, 2013
Fall is actually my favorite season, including to photograph, though sadly my camera is awaiting repairs at the moment. I was cleaning out my e-mail and files from the tizzy that was this summer and found this one–sunset on the 4th of July, awaiting darkness and fireworks.
November 1, 2013
How hard it is to say what it was like
in the thick of thickets in a wood so dense and gnarled
the very thought of it renews my panic.
It is bitter almost as death itself is bitter.
But to rehearse the good it also brought me,
I will speak about the other things I saw there. (Dante’s Inferno)
I’ve seen this passage quoted before by others in order to explain what it’s like to grow up autistic and not knowing. It’s still by far the best explanation of that feeling I’ve ever read.
For Autistics Speaking Day this year, I want to say something unequivocally. And it’s incredibly rare that I feel qualified to just tell other people what they should do, but—if you are an autism parent—
Please tell your kids that they’re autistic.
Or have autism. Or Asperger’s Syndrome. Or are on the spectrum. Whatever. They can make their own choices about language preference later.
I don’t know your kid, so I don’t know when the right time or the right age is, or whether the best way is to have a talk and tell them all at once; or slowly, in trickles of information over time; or to simply always talk about it at home so they grow up always knowing.
However you tell them, just tell them the truth. It’s worth it.
1. They already know that they’re different. You can’t keep them from knowing they’re different by not telling them.
I knew when I was 3 years old. I could tell things were harder for me than they were for other kids. I could tell when I didn’t understand things that other people did (and when they couldn’t understand things that I did), that other people didn’t have as hard of a time explaining what they needed and getting it, that I didn’t know what I was supposed to do when other people expected me to, that I was expected to know things I’d never been told. That I didn’t know how to dress, that I didn’t get invited to parties. That things hurt my ears, that being touched felt wrong, that I was ignored by every single girl in my 5th-grade class except one for the entire year.
We have very good pattern recognition. It’s very hard not to notice, actually, when every single description of the world you’re given…doesn’t quite match up with your perception.
And being told by adults that I was wrong, that I was imagining it, didn’t make me wrong about what was happening; it made me not trust adults.
2. They deserve to know. They are entitled to accurate information about themselves.
If you had a kid who was gay or transgender, would you want or expect them to go the rest of their lives without the self-knowledge and self-acceptance involved in claiming those labels? Or without the ability to seek out information, history, appropriate health care, emotional support, and community with others if they wanted it? Why should those things be denied to an autistic kid?
(I wrote that and then realized that of course there are parents who would deny those things to an LGBTQ child. But I hope you wouldn’t.)
That someone is autistic is information about their brain, about their body, about their life, and they are the rightful owners of that information.
Most people I know who either found out their diagnosis, or received a correct diagnosis as a teenager or adult, were relieved to have the knowledge, but resentful of their parents having kept it from them. I know people who are glad not to have been diagnosed as a child—mostly because of the awful things it was considered acceptable to do to autistic kids when we were growing up, not because we didn’t crave the knowledge—but no one who was diagnosed and is thankful that the information was withheld. Most people I’ve known have been relieved to know that it wasn’t just their fault that they couldn’t just be like everyone else. To find out that there were other people with similar challenges who were okay.
3. Yes, labels can carry stigma. But it’s the stigma that’s wrong, not the fact that a word exists to describe some facet of how your brain works.
Not knowing the word “autistic” will not make your child not autistic, and it will not protect them from the mistreatment that frequently follows being autistic. I carried no label of a disability for most of my life, yet most of the same things happened to me as to people who did.
If what you really fear is that your child will be marginalized or mistreated for being autistic, then fight the marginalization, misinformation, bigotry, and dehumanizing stereotypes with us.
The burden of a stigmatized identity or disability label is difficult, but the burden of a void of missing knowledge about yourself, is much worse.
4. Knowing how to describe why things are harder for you is not “using it as an excuse.”
Knowing why certain things are hard for you (and other things are easier) is vital to good decision-making about how to use the resources of time, energy, and cognitive bandwidth that you have. And also to constructive thinking about how to come up with workarounds and good strategies for things that you want to learn to do.
That I didn’t know and couldn’t tell anyone why things were so hard for me, did not make them less hard. It did not make me magically able to just do things the way everyone else did. It made me a lot more anxious, guilty, resentful, and frightened to ever put myself in a situation in which I didn’t know if I’d be able to do what was expected of me.
Being able to recognize what’s a productive use of your internal resources, and what isn’t, is a vital skill when you’re seeking to live sustainably with a disability or major cognitive difference. Neurological boundaries don’t disappear because you lack the words to describe them. Disregarding or pushing past those boundaries is a useful thing to be able to do sometimes, but having to do it constantly and relentlessly is no way to build a life.
5. Having community is pretty much the best thing.
There’s a lot about being autistic that most professionals, teachers, or therapists don’t know anything about. Or even if they do, they can’t know what the internal, subjective experience is. So practically the only way to get perspective or help from someone who knows exactly what you’re talking about, is to talk to other autistic people. From certain sensory, cognitive, and emotional experiences; making self-care skills manageable; organizational strategies; making your habitat friendly and interdependent living; useful use of scripted language; overload, shutdowns; the reality of midlife breakdowns and loss of abilities later in life (because yes, this can happen at any time in our lives, not just early childhood); to differences in how we experience time, memory, sexuality and gender…to just being able to share obsessions and pleasures like cats and trains and things lined up in rows with mutual passion. It is really, really good to be able to talk to other autistic people about things.
Sometimes it’s just nice to talk to someone who talks or thinks like you.
I also have autistic friends who aren’t part of the online/advocacy communities, and that’s fine. Some people decide they don’t need or want that community in the same way, and that’s their decision to make. But they can’t make an informed decision if they don’t have the relevant information.
6. They will figure it out anyway.
We have the internet, and because autistic people write about our lives all the time, in blogs and books and poetry and song, they will stumble across something that accurately describes what their life feels like in a way that nothing else ever has.
At somewhere between 1% and 2% of the population, we are everywhere, and they’ll meet one of us, and someone will tell them the truth.
We are characters in books, movies, plays, and popular television shows. There are more and more chances that they will see themselves accurately represented, and put it together.
I had to figure it out myself (though not without help, but that’s another story). It took me 28 years, and it consumed me utterly. I could never get on with living my life in certain ways until I knew. I will probably spend the rest of my life trying to describe, trying to tell the truth, about what exactly that lack of knowledge did to me. I’m 31 now and I’m not even close.
Walking down the street and feeling like the world makes sense is a feeling I’m still getting used to.
Harder to express how that break becomes healed, a bone once fractured, now whole, but different from the bone never broken. And harder still to follow the path between the two. (Eli Clare)
…and when they do figure it out, and realize that you knew and withheld the information, both of you will have to deal with that breach of trust.
I’m thankful, at least, that my parents genuinely didn’t know, that they were actually misinformed and clueless, that even if I still think they were somewhat in denial, they weren’t lying to me. If they had been, and I had ever learned that they’d deliberately denied the information to me, I don’t know that I’d ever forgive them for that.
And while I’m as proud of this as anything I’ve ever done, it’s not something I would put someone through if I could help it. You can help it. There’s so much more of life to live than having to wrench the most basic facts about yourself out of the fabric of the universe.