awareness isn’t expertise, and needn’t be

autism societyIt’s Autism Awareness month. I’ve been planning to write about autism. The month is half over. I’ve written twice: once to say “I’m writing” and once to say “Here’s what I think I know.” The comments on those posts have taught more than the posts.

I have a list of related posts, germs of ideas, things I want to find out. But, it seems, other projects and responsibilities intrude. I can’t do the research that I would like to do be offer answers here, to have great insights.

I wanted, for example, to find out what it is like when autism is part of a family. What’s it like to be a mom, for example?

Katie Donahue Bevins answers those questions, writing as a poet.

I dragged Sean into the house, his voice screeching, saying over and over,

“I want a new Mommy!”

All I could think was, “Good luck with that. You’re stuck with the one you’ve got.”

From brothers.

Chantal Sicile-Kira answers those questions as an “author, speaker, autism expert:”

When he was little, it was very hard figuring out how to reach him, how to teach him basic skills. Nothing seemed to work for Jeremy as it did for other children with autism. I had to quit my work (in TV and film production) in order to teach him and to do physical therapy exercises with him every day.

To this day, although he has proven how smart he is, his motor skills and sensory processing challenges are such that he requires supports for many aspects of every day life. We are working on helping him become as independent as possible, by trying different therapies to work on motor skills and sensory processing.

from “Autism mom shares her knowledge”

Tammy Lesick, answers these questions by getting autism posts from people like Katie and Chantal on her site, “autismlearningfelt.com

I wanted to offer insight, that is, until I realized that awareness isn’t about being an expert, about having the most profound insights. Sometimes being aware is about stopping long enough to notice.

These moms are worth noticing.

9 responses to “awareness isn’t expertise, and needn’t be

  1. Hi Jon,

    Reading those stories brought back a lot of memories. My younger brother is autistic, and I see just a glimpse of what my mom went through in both those stories. I think the hard thing about autism is that there is no “normal” – no normal therapies, no normal behaviors, no normal solutions. Each child is different, very different, and what works on one might not work on any other, or might only work for a time. My brother was diagnosed when he was two, and I remember the bounds he made from not speaking, to speaking in just movie quotes and advertising jingles, to actually carrying on a conversation, to making friends. The constant in all this was my mom, who fought for him to get the help he needed, who used to brush his arms with surgical brushes to stimulate his nerves, who was always patient whenever he would break down. Today, my younger brother is one of the coolest people I know. He graduated from high school, has a job and friends, and has found a niche performing in our community theater – the kid who didn’t speak until he was two. He is funny and sweet and wonderful. I am so incredibly blessed to have him as a brother, and to have seen how far a mother’s love can really go.

  2. Amanda, this sentence is huge: *I think the hard thing about autism is that there is no “normal” – no normal therapies, no normal behaviors, no normal solutions.* That is becoming so clear to me as I’m paying attention to what people are saying.

    Thanks for adding your story.

  3. Thanks for these links, Jon. (I talk as though I know you personally! I guess that’s the power of blogs.) I read the interview of Chantal Sicile-Kira, and this part resonated with me the most: “Another joy is all the wonderful people over the years who ‘got’ my son …” This is a true gift, as I’ve found out. I have felt very much alone in understanding–cherishing–a person in my family who has higher-functioning autism. I didn’t feel so alone when a man in his mid-seventies also “got” this person. We had a wonderfully shared understanding–a great support in life’s silly ins-and-outs. A few years ago he passed away.

    I’m not entirely sure what it takes to “get” autism, if you clearly don’t have it yourself. It’s take a lot of imagination, for sure, as in understanding any other human being. But more than that–I was blessed by these words just recently–someone told me, “I think God gave you a special gift to understand autistic people.” I don’t know why this is. I suppose as one member of the Body of Christ, I can’t reach out to every hurting person out there. So maybe it’s that God gifts each person in unique ways to feel burdened for certain people. This is my particular burden. And recently I’ve taken up really researching this autism business, finally recognizing, yes, this is what God wants me to do (with the help of my encouraging friend’s words). Maybe we’re alike in that way. Why did you set out on this topic in the first place (besides the month that it is)? I guess I better backtrack on your blog. You probably say somewhere.

  4. Thanks for this! So many people think that autism awareness means you have to know it all, and then encourage others to know it all about autism, when in reality, it’s much more simple: be aware. Be aware that our kids are out there, that our kids are going to continue to be out there, and their numbers are growing. Be open, compassionate, and interested. Be willing. Aware. So much easier than it sounds!

  5. Hi Jon,
    I work with autistic children and their families from all over the world. No 2 are alike. Yet these children are smart, funny, wonderful little people who often have very complex medical issues which can be extremely stressful for the entire family. I am in awe of the moms and dads who day in and day out prepare special foods, give multiple supplements and medications, participate in a wide variety of therapies and some how work another job or take care of other kids and one another. We still have SO MUCH to learn about autism as a disorder…causality as well as perfecting treatment options. It is so important that we also focus on the humanity of autism and its effect on the family and on our society. Thank you and others for taking the time to simply be aware!

  6. Johanna – i wish I knew why I started on this topic. I don’t. I was looking at some calendar thing one day and noticed that April was Autism Awareness month and it jumped out at me. I’m not suggesting that it was random, far from it. But I can’t give a satisfying answer as to why. Not yet anyway. But I almost always don’t understand until long after. That’s how I’m made.

    thanks for writing. And, what counts as knowing personally?

  7. Barnacle Boy’s mom – thanks for stopping by. And you are right. There are some things that are harder than they sound. This? Being aware? Is easier.

    And anyone reading this comment, click through to her blog: http://autismspectrum.wordpress.com

  8. Thank you Lisa, for stopping by. I am becoming so intrigued? provoked? ___ (I can’t find the right shade of meaning) with the reality that causality is still so unknown. There are theories and threads but there is so much variation of manifestation. And it is a family challenge. I’ll keep looking at rimland.

  9. Jon,
    Thanks for the discussion. I began typing and processing comments. I deleated it. But I think right now as I’m listening to my Drew sing the alphabet and giggle in delight is that I know that God designed Drew for a purpose. Our days are unpredictable, but taking one day at a time has been one of the best things I have learned through this journey. And, many times, I have learned more about myself than anything.