listening

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The conclusion is that both emotional poverty and an aversion to company are not symptoms of autism but consequences of autism, its harsh lockdown on self-expression and society’s near pristine ignorance about what’s happening inside autistic heads.

– David Mitchell, Introduction to The Reason I Jump

..

We are not hiding. You search with limited senses and therefore our humanity is camouflaged to you.

– Barb Rentenbach, I Might Be You

I cannot count the number of times I’ve been asked if I’d read Naoki Higashida’s The Reason I Jump yet. Or if I’d written about it. Or planned to.

I cannot tell you how many people have sent me a link to it, saying, “Oh my God, you HAVE to read this!”

I cannot tell you how grateful I am for all the hype around it.

Yes, I know, Jon Stewart LOVED it, raved about it, got it to number one on the New York Times Best Seller list.

It’s wonderful.

And yet, I’m troubled.

Because I also I cannot tell you how hard it is to accept the fact that so many people still find it so mind-blowing that a boy who is profoundly impacted by autism has thoughts and feelings and, dear God, something to say.

I love Jon Stewart. I mean, I really, really love Jon Stewart. His show is utterly brilliant and, after watching him for years now, I’ve grown to respect him personally.

Watching him interview David Mitchell, the man who translated Naoki’s words into English, I was thrilled that the first-person autistic perspective was getting attention on his platform (even if it wasn’t that person sitting in the seat). And, at the very same time, I was vaguely nauseous.

Watching Jon, someone whom I so greatly admire, appear to be so shocked to be discovering, apparently for the first time, that an autistic person had not just a rich inner life, but also a keen awareness of the world around him, made me sad. His reaction to the discovery was everything I could have hoped it would be, but the fact that it was news, well .. it just showed me how far we still have to go. Because there is so much work yet to do when someone like Jon, who is not only bright and aware and compassionate, but who does so much work for the autism community, is surprised to find that someone who doesn’t speak could have so much to say.

And Naoki does indeed have an awful lot to say. Like this …

I ask you, those of you who are with us all day, not to stress yourselves out because of us. When you do this, it feels as if you’re denying any value at all that our lives may have–and that saps the spirit we need to soldier on. The hardest ordeal for us is the idea that we are causing grief for other people. We can put up with our own hardships okay, but the thought that our lives are the source of other people’s unhappiness, that’s plain unbearable.

His words made my heart hurt yet soar at the same time. Hurt that so many are still struggling, but soar with hope because, from his perspective, it’s not autism itself that’s hurting autistics as much as it is our reaction to it.

Reading about that awful, soul-crushing feeling that he is a burden on those who love him – well, I know it’s counter-intuitive, but, as a parent, that comes to me as great news. I can’t control autism, but I can control my reactions to my autistic daughter. I can make sure that she knows that I do not in any way, shape, nor form look at her or her autism as a burden. I can DO that. And knowing there is something that I can control that will make a difference in my child’s life, well, that’s kinda big, don’t you think?

When Naoki is asked if he’d like to be “normal,” he says:

What would we do if there was some way that we could be “normal”? Well, I bet the people around us — our parents and teachers — would be ecstatic with joy and say, “Hallelujah! We’ll change them back to normal right now!’ And for ages and ages I badly wanted to be normal too. Living with special needs is so depressing and so relentless; I used to think it’d be the best thing if I could just live my life like a normal person.

But now, even if somebody developed a medicine to cure autism, I might well choose to stay as I am. Why have I come around to thinking this way?

To give the short version, I’ve learned that every human being, with or without disabilities, needs to strive to do their best, and by striving for happiness you will arrive at happiness. For us, you see, having autism is normal — so we can’t know for sure what your “normal” even is like. But so long as we can learn to love ourselves, I’m  not sure how much it matters whether we’re normal or autistic.

He believes that everyone around him wants something for him  that he does not want for himself.

I’d keep quoting the book, but I’m going to run into copyright infringement, so you’ll have to grab a copy and take it from here.

The book is wonderful. Truly. And I’m thrilled that it’s getting the mainstream attention that it is. But again, none of the big ideas presented in it is really novel. They are, in fact, part of a now familiar refrain — if you know where to look.

We are not hiding, says Barb. You search with limited senses and therefore our humanity is camouflaged to you.

Last night, Katie and I went to see a talk with Dr Sharon Draper. She was reading from and speaking about her book, Out of My Mind, which Katie has read some seventeen times. I might not have believed the number until Dr Draper was talking about a particular section of the book and said, “I believe it was Molly who said …” and Katie whispered to me, “It was Claire,” then promptly turned to the page to show me that it was, indeed, Claire.

The book is about an eleven year-old girl named Melody who has Cerebral Palsy and the misperceptions about her because of her inability to communicate. It’s a fabulous book for kids, and I dare say, for adults too.

During the talk, Dr Draper asked a ten year-old girl to come to the stage. She asked her her name. The girl said her name was Alex. She asked her to get up and walk around in a circle. She did. She asked her to do some simple addition. She did.

“Clearly,” Dr Draper said to the crowd, “Alex is very bright.”

And then she whispered some instructions to Alex. She told her that she was now unable to move on her own or speak. She folded her arms and her legs in front of her, as Melody’s would have been.

She asked her her name. Alex smiled up at her in response. Dr Draper looked at the crowd and said, “Oh, isn’t that sad? She doesn’t even know her name.” She asked her to walk in a circle. She didn’t. She asked her some simple addition questions. Alex made the same noise each time. The audience giggled.

And Dr Draper said, “Nothing has changed except Alex’s ability to tell us what she knows. But now, she has gone from being a bright kid to someone we laugh at and whom we feel safe to assume knows nothing.”

It was an extremely powerful moment.

We are not hiding, says Barb. You search with limited senses and therefore our humanity is camouflaged to you.

We must find a way for every Barb and Melody and Naoki to be heard. We must invest in technology and support and encourage innovation in any and all methods of alternative and augmentative communication.

But …  we also must be willing to listen when they tell their stories. Even if it’s not always easy to hear what they have to say.

Wretches and Jabberers

I Might Be You

Loud Hands: Autistic People Speaking

Amy Sequenzia – Non-Speaking Autistic Speaking

Carly’s Voice

All of the above feature, are written by, or include material written by non-verbal autistic people. All of them offer insight, evidence of a full, beautifully layered internal life, and a challenge. A challenge to listen.

Because autistic people thinking and feeling and, yes, even speaking – in their own way – is not revolutionary. Unfortunately, us listening apparently is.

23 thoughts on “listening

  1. “Because autistic people thinking and feeling and, yes, even speaking – in their own way – is not revolutionary. Us listening apparently is.”

    How poignant. How Simple. How brilliant.

    Love you,
    Mom

  2. Thank you for the reminder that we do still havd so much left to do. I know for certain I would be as incredulous as Jon if I wasn’t walking my life’s road with my two little teachers. Thank you also for reminding me how lucky I am to be in this particular path…

  3. You bring the argument together with such skill. I am awed by it and you for making it. Wow, am I proud to be your dad.
    Love you for you and all you do…
    Dad

  4. It’s interesting for me, because I am raising two on the spectrum- one is verbal and one remains nonverbal. I see firsthand every day the attitude of “nonverbal equals low functioning” and I’ve seen firsthand how that simply isn’t true. We are working so hard to empower both boys to communicate in whichever way they can, and I have to make a conscious effort to allow enough time for both boys to respond, as well as not walking away too soon or ignoring my nonverbal child when he is communicating. It’s so easy to rush communication or to speak for my kids, and it is yet another worry hat I have for my children. I don’t want my kids to be silenced. I don’t want them to feel overpowered by those of us who communicate quickly and freely. And I can tell you my nonverbal child is ridiculously clever, funny, and smart. I don’t want other people to miss out on what he has to say just because he can’t verbally communicate. He has so much to offer this world, and I’m thrilled that more nonverbal authors are emerging to tell their stories. Every one of them is making my childrens’ lives easier by challenging others to consider those with different neurologies as being as valuable of everyone else.

    • I agree wholeheartedly. I have the pleasure of working with Barb Rentenbach. What she and other non-verbal authors has taught me and other psychologists is dramatically changing the pace of quality of progress for other non-verbal ASD clients. We are indebted. Thank you Jess, for this artful and passionate presentation of the facts. I will now share this blog with as may people as possible and I encourage you all to do the same because clearly much of the world is still not listening to what these dear people are saying.

  5. The thing that’s most disconcerting to me about Jon Stewart’s reaction as you’ve described it is that his own son is autistic.

    • I’ve never read nor heard anything to that effect — and a(n admittedly quick) Internet search came up dry. Where are you getting that from?

  6. I’ve always known there was so much inside my eldest son who is non-verbal. It is thrilling to me to read these accounts of adults with autism who have so much to say even if they don’t communicate with words. Adding another book to my list which I will be sharing with my son’s school.

  7. Jon Stewart has participated in a Comedy Central Autism event – http://www.comedycentral.com/shows/night-of-too-many-stars. Robert Smigel, who started the first benefit in 2006, has an autistic child. The article that talks about this has a bit of a confusing sentence structure that you could read as referring to Jon Stewart. I think that’s where the confusion comes from. (http://autismoptimism.blogspot.com/2008/03/jon-stewart-hosts-autism-benefit.html)

    Perhaps unless someone is LIVING with someone who is autistic, it’s hard to “get it” the way we do. People in general have a hard time putting themselves in other people’s shoes. It’s not surprising they have a hard time thinking “outside the box” when it comes to more severe communication issues. Until it’s REALLY in our lives, thinking beyond “normal” communication just doesn’t occur. The more we can share this, the more lives we touch, the less surprising it will be till, hopefully, it won’t be surprising at all.

  8. Love it!
    Just one thing: Jon Stewart is still too involved with A$ – Night of Too Many Stars has their philosophy in it. And Jon wasn’t very nice when I met him (he said he would find a cure for me, after I said I was a proud autistic)
    But I have hopes for him and I wrote an open letter to him

    • Thanks for sharing that, Amy 🙂 I just went to the Comedy Central site and wrote a short bit shamelessly plugging the greatness that is A Diary of a Mom, and how her journey and writing were a life/perspective changer for me. Who knows where this kind of thing lands, but it would be great to put something else out there besides the “cure” model of autism activism.

  9. My daughter is 9 and has probably read Out Of My Mind 17 times, too. I just read it the once, but it is, indeed, powerful. And kind of heart-wrenching at the same time.

    It is a testament to the impact you are having on the world that I, a parent with two neuro-typical children, am sort of … surprised that people are surprised that non-verbal people aren’t necessarily non-thinking (and certainly not non-feeling). It’s become pretty much a part of my reality.

    • Wow I just looked at the link you shared and it blew me away. My son is 7 with low muscle tone, lax joints and a connective tissue disorder. He has had global developmental delay which we worked so hard on. Now our biggest issue is “writing” and believe me I am not to worked up about that one. We are now using a tablet, keyboarding and home schooling.
      I just could relate to what was written for different reasons. Thank you for sharing.

      • Thank-you Jo! I really believe that many parents can relate to the idea that different forms of communication are just as good as others for many reasons. Yours is a perfect example of a child that is not Autistic but still finds other forms of communication easier than others. My niece that I wrote about has Cerebral Palsy, and my two sons are Autistic. I really appreciate you taking the time to tell me that my article resonated with you! 😀

    • Thank you for that link – had to put that on my blog as a link. It’s interesting how we NT’s forget how hard words can be. I know that when I’m very emotional, I lose mine briefly because the emotion is too much and it takes some time to get the words out that can communicate the feeling.

      • Thank-you! It’s so true isn’t it, we say “I’m all choked up” to mean that we can’t verbalize our emotions the way we want to at that time and that is completely okay. Yet, we forget sometimes that needing to use a different form of communication other than verbal doesn’t make it less than, it just means it’s the form that works best for that person. Thank-you for taking the time to comment about the article 🙂

  10. I don’t think Jon found it mind blowing that he has thoughts, feeling and something to say. I think he found it mind blowing that he could express it so eloquently, which is an accomplishment for anyone of his age. I also think he also found it mind blowing to grasp the perspective of someone with autism by reading this book. You can find a book to be mind-blowing and it doesn’t mean you expected less of the author. – Just a different take on his reaction.

    • i like your take better than mine, and i hope that yours is more accurate. mine was visceral, and perhaps influenced by the fact that i come up against skepticism so often that i’ve come to expect it. food for thought, thank you.

  11. I really apperciate your comment TLS. After emailing this post to my mother (my son is 2.5 with asd) she was slightly taken aback. My son is her first experience with asd and she is finding the autism community a bit hard to figure out. She doesn’t know what to say, or is afriad to, because is seems that someone is always offended. I think she made a good point when she mentioned that as a person who has no prior experience with autism, how would she know about non-verbal autistics and how/what thay can or can not share. Her heart is in the right place and she wants only to help my son in the best way she can. She was very excited by the Jon S. interview, it helped her see what is possible for my son, it gave her some hope.

    As a side note, I absolutly love your blog and look forward to reading it every day. It has given me a new perspective on my son’s asd, thank you for that. I apperciate all that you do for the asd community 🙂

  12. I didn’t take it that he was shocked or had his mind blown that the child could communicate. I thought it was more, “I’m blown away that a child can move people with words in such an emotional way.” I thought perhaps it was more of an emotional reaction than, “Dude. Kid is smart.” But that’s just me. I always see the best in people and in situations. To a fault.

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