Sunday, January 27, 2008

Autism All Day

The first thing I read this morning is Suzanne Wright’s article in Parade magazine, Autism Changes Everything. It’s less than 400 words, but what words they are: painful, devastating, mourned, disease. Grief and anger. Slipping away. The hoped for “solution” is ugliest of all: eradicate. In between, I see that “adults with autism are failing to meet their potential.” Failing. Am I failing? Possibly. I don’t feel much like going out and meeting my responsibilities today.
Today’s responsibilities include the bowling alley. I take a group of autistic teenagers on monthly outings. We practice being social together. We work at having fun. It’s some of the hardest work I do. While the kids get reacquainted in the arcade, their parents ask me about the Hub presentation earlier this month. They are supportive, encouraging, encouraged. Maybe someday, people will ask their own children’s thoughts on autism. They want to know more, and more and more. We talk until the there are no more tokens to feed the arcade machines.

I am conscious of looking at them as I speak, looking from one to the next. This time I’m not trying to act “normal” or make anybody more comfortable. I’m hoping I’ll catch the “STOP” signs in their eyes before it’s too late. Did I just say “advocacy”? I try to keep my politics understated when I’m working with kids. It’s subversive work, you have to sneak the acceptance in, or some parents pull their kids away. Not this group. They patiently wait for me to construct my sentences. Somehow “eradicate” makes it in. “No more like him?” a mother asks, “Can you imagine? I wouldn’t want to see a world like that.”

“No barking,” one of the other moms says to her daughter. They just want their children to be accepted. I don’t blame them for that. I watch the man in the alley next to ours, staring. I am daring him, quietly, to say one word about the boy, as tall as I am, who is stomping his feet, screaming, insisting on having his name at the top of the list where it belongs. I have my “STOP” lights turned on. He finally turns back to his own family, his own business.

When I use the word “advocacy” it spins in my head like a shiny coin, revealing one side, then the other, finally losing its balance, landing with a thud. Some people call themselves and others “advocates,” when what they advocate is a world without kids like these in it. The word has become as tarnished as “awareness” has. “Awareness” of how tragic it is to have an autistic child.
A smiling young man bounces up to me, shakes my hand. We are happy to see one another. School is going okay, he says, volunteering that “most people don’t understand anything about autism, and the ones that do overreact, but that’s nothing new.” And then he is off to play with his younger friends.

After the outing, I need a nap. Being social is draining, always. Always. Some of my non-autistic friends find this amusing, or worse. A grown-up person needing a nap? Nearly every day? It’s no more considered appropriate than stomping your feet at the bowling alley. Less public, less confrontational, but certainly not normal. I know this. It’s something I am expected to be ashamed of, some kind of failing. I dream about words. Letters falling, arranging themselves into words, always the wrong ones, unpronounceable, full of meaning, but not in a language I know.
Mike McCarron has posted a letter to all of us at Autism Hub. He thanks us for our support and for our words about Katie. It is a beautiful letter, full of quiet dignity, informed by understanding and true fellowship. Please read it if you haven't. Compare the words and the tone of Mr. McCarron's letter to Ms. Wright's story today. One of them knows what it is to have a child truly be "no longer there." One has a reason to be bitter. Instead he offers thanks and encouragement. He asks that we carry on this work.
The cover of this morning's Parade posed the question, "Is There Hope for Autism?" "Is there hope?" was what stuck with me. I carried it with me all day, "Is there hope?" The meaning of the word escaping like air from a failing balloon. The timing of Mr. McCarron's letter was good. Now I can answer, maybe. Maybe there is.


  1. I say screw those people who make you feel bad! If this Suzanne Wright lady thinks adults with autism are failing to meet their potential, what is she doing about it? Is she looking at how she treats people who have autism, and thinking maybe she is one of the ones throwing the barriers up?

    One thing I try to do, although I probably don't do it all the time because it's hard, is try to communicate the way my daughter wants to. I know it's hard for her to communicate the way I want to, so I try to meet her half-way. Sometimes when she is concentrating on being "normal" she just is not the same person - she's pretending to be someone else and her true wonderful self is cloaked. Not cool. Wouldn't it be cool if we could have autism social training for parents, so all of us could meet our kids half-way? I think your blog helps a little, when you tell us what's hard for you. I ask mine if she feels the same as you describe and if she does, I adjust how I communicate with her.

    Never feel guilty about needing a nap! It's a cultural thing that does not fit in a capitalistic society such as ours. There are tons of studies proving naps make you more productive. Actually, never feel guilty about doing the things that keep you going. You do alot of good work, and you need to make sure you are taking care of yourself when that work drains you of your energy.

  2. All minority groups will tell you that one of the strongest things that assists children of that group to succeed is to have contact with adult members of that group who have already succeeded.

    I am sure that your outings with the autistic teenagers will have benefits that will outlive your lifetime. And for that alone, you deserve a nap.

    I have not read the Parade article yet, and am not sure that I shall. I know what to expect from it, and don't need reminding that there's an ignorant world out there. But there's also another world out there, one inhabited by people like you, and for that I am thankful.


  3. Your story about the bowling alley reminded me of a recent event that made me really happy. My cousin and I were out at a bookstore to pick out some DVDs. My cousin's mannerisms clearly indicate that she's autistic, and she does this cute little hopping-flapping thing when she's excited. I was watching her and chuckling to myself when a man approached me and said, "Excuse me, but what are you laughing about?"

    "My cousin - she's having a great time here."

    "Oh, okay. I'm autistic too, and I just wanted to make sure you weren't making fun of her."

    Despite being a social butterfly, in many situations, my cousin is not able to effectively advocate for herself. I was really happy that this guy - a total stranger - was keeping an eye out for her. So cool!

  4. I hope when my son is a teenager he will know someone like you who can serve as a true role model. What you are doing is world-changing and I for one am very grateful for you.

    Love your story, kitty. :-)

    karen in ca

  5. I take a nap almost every day! I think we will be healthier because of it! :)

    I read that article in Parade too. My mom had given it to me while we were in the hospital with M. So many of the articles read the same. They repeat the same stuff over and over as if every child and every adult with autism is exactly the same. I had no patience for it as my daughter continues to have one seizure after the next and we can't seem to find anything really good to help her.

    I love that you go out with the kids. It sounds like lots of fun.

  6. What a rich and beautiful post. I felt the same way when I saw the Parade piece. Deflated. Sad that yet again what makes a cover story is the focus for a cure.

    And as for a nap- why not? We all need to recharge. People do it in different ways. I get totally drained from social interactions. Exhausted.

    I think you're amazing.

  7. oWhy don't Suzanne help us and not pity us? I hated to be pity on by someone that has no clue that I am just like anybody else! She said tht adults with autism are failing to meet their potential, what is she going doing to do about it? Nothing. I did read the Parade article about it, and it is the one of the worst article I've ever read. All it is all about the pity parties about people living on the specturm. I hope that Suzanne will look at the positive side of all people, in all ages, on the autism specturm so she can have a positive outlook of her grandson, and to help parents who are sad that their chird(ren)or is on the, autism specturm, or a person who just found out that he/she is on the autism specturm that there lives in not over, it just the beginning!!! I am not pretending to be someone else nor wanted to be cured, but I just like anybody else, I wanted to be valued and to be a prodctive member of the society and I am NOT a sad case of autism!!!

  8. "Is there hope for autism?" They may as well would have said "is it hopeless", a "lost cause". And then me gets to thinking "hope" for what? The objectives of the eradicators and some of the curebies are appalling!


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