Thursday, June 17, 2010

theirs to define


It's almost inevitable. If enough autism parents are together in a room, one of them will ask.

How did you decide to talk openly about Brooke's autism?

I'll tell them that I'm happy to run through our logic, but that first I must make the disclaimer that it's a personal decision and that everyone has to handle it in the way that they think is best for their child. I'm big on disclaimers, you see. Nothing about autism is a One Size Fits All proposition. So I'll say that none of us can crawl inside each other's families. That we have to trust one other's ability to choose the right paths for ourselves and our children.

And then I'll answer the question.

I will tell them that we believe that the only way to extract the stigma from the label is to demystify it. To make it real. To give it a face, a name, a three-dimensional being.

I will tell them that we believe that awareness leads to compassion and compassion to acceptance.

I will tell them that we believe that ignorance perpetuates discrimination and fear.

Someone will whisper the next question like the mom at the dinner table in Saint Elmo's Fire.

But have you told your daughter? Does SHE know?

I'll answer that I have. That we use the words and the concepts as openly at home as we do anywhere else. I'll tell them that I have no idea how much of it she understands yet. I'll explain that her language just isn't there yet.

Someone will ask why. But why does SHE need to know?

I'll invoke the words of Dr. Stephen Shore. “I was lucky in that my parents used the word autism around the house for as long as I could remember. We didn’t know what it really was back then but it sure helped explain a lot of the differences.”

I will tell them that we believe that knowledge is power and knowledge of oneself is the greatest tool imaginable.

I will tell them that we feel that secrets imply shame or fear. Or both. I will tell them that I want neither in my home.

I will tell them that we believe that our daughter deserves all of the insight we can give her into her strengths, her challenges and everything in between.

They will ask BUT HOW? How do you tell them?

I'll go back to Stephen Shore and tell them about his four-pronged method of disclosure.

1. Talk about the child’s particular characteristics. Cite strengths first and then talk about challenges.

2. Line up strengths with challenges – identify those that can be used to offset each other.

3. Non-judgementally compare their set of characteristics with other people. Include luminaries that feature prominently in history or popular culture. Newton, Einstein .. you know the drill.

4. Explain that the particular set of characteristics fit under a label.

Someone will say, Fine, so you talk to them about common characteristics and help them understand their challenges, but why do you need to put a LABEL on it?

She'll spit out the word LABEL as if expelling a sip of turned milk from her mouth. LABEL.

I'll ask why a name has to be a bad thing. I'll ask if we can't reclaim it for our children. Reframe it completely. Give it to them - make it theirs to define. I'll find a passion stirred, the sleeping giant opening one eye and peering around the room. I'll try to contain him.

I'll ask a question of my own.

What if we could bring these kids TOGETHER? What if, instead of labeling them per se, we can give them a tool with which they can identify themselves and EACH OTHER? What if the label is a gateway to the monumental understanding that these kids are NOT alone? What if this group - this incredible group of people - this group that can so easily feel so desperately isolated from their peers - what if they found out that their differences, in and of themselves, are not so damn different after all?

I'll try to rein it in, but I'll fail.

I'll turn to the woman who asked the question. I'll leave her with one last question in return.

Can you IMAGINE the possibilities?


Jess can be found at Diary of a Mom where she writes about life with her two daughters, Katie* and Brooke* and her husband, Luau*. 


  1. Jess, if my children's book (to help introduce ASD kids to their diagnosis) ever gets published, I want this post to be the forward.

  2. There you go again, Jess...plucking the feelings right out of my heart and relaying them so much more beautifully than I could ever hope to. Thank you for continuing to write this blog. Your voice is amazing.

  3. meredith, i'd love to be a part of it!
    and one mom, you are too kind. we're all in this together!

  4. "I will tell them that we believe that knowledge is power and knowledge of oneself is the greatest tool imaginable."

  5. Yes, amen! Disclosure is the most important piece of autism awareness. And I think that it's only a label if we lose sight of the individual, if we only mention "autism" and not the person's individual strengths and challenges. I think that those of us who do that for our children, who work for that and teach them to self-advocate, are not labeling. We're empowering.

  6. I love this ~ especially the end:
    "What if this group - this incredible group of people - this group that can so easily feel so desperately isolated from their peers - what if they found out that their differences, in and of themselves, are not so damn different after all?"
    Once again, you have hit the nail on the head. And as far as I'm concerned, the possibilities are endless!! :)

  7. I agree completely. We need to have a community. And a community needs a way to identify its members.

  8. Riley recently publically identified herself as "autistic," among other things. Even though we've been really open, it threw me for a minute. My husband wisely knew it was a good thing. "What were these kids called before that?" he said. There was a certain ownership in her claim. No shame or despair. Just part of who she is.
    If this were utopia, labels wouldn't be necessary. 'Til then, let it be on her terms.

  9. We have also spoken openly about Autism in our family since it became known that's where Jacob was: "on the Autism spectrum". I can't imagine not talking about it or keeping things secret - why? It's clear Jacob is different, why not have a true, useful label to identify the type of difference. In my latest post on my blog "The Squashed Bologna" I recall a discussion my son Ethan and I had about his twin Jacob where we talked about his autism, I can't imagine not being able to have that conversation with my son. I don't think Jacob understands the label about himself yet, because it is too abstract in nature, but I do regularly tell him that his brain works differently than a lot of other people's and the name for this type of difference is Autism. I also tell him that I know he needs to work so much harder than other people to learn some things and that I am proud of him every day for how hard he works. I know that at some level he hears this, though what he makes of it, I will have to wait for the future when he can be more explicit about his more complex thoughts and feelings.