Tag Archives: support group meetings


Are you ready for the irony of Autism Awareness Month ironies?

As many of you know, I am the southern Oregon chapter rep for the Autism Society of Oregon, and I facilitate the monthly support group meetings. Since, as all of you know, this is Autism Awareness Month, I planned to show an informative DVD of a presentation given by an adult with Asperger’s, loan out many of the books I’ve reviewed here, share some Easter candy, and give out various autism-related “goodies” – magnets, bumper stickers, symptom cards, etc. I got there a few minutes early, set up the TV/DVD player, put out all the books and paraphernalia, and thought about what I wanted to say during the meeting.

But no one came.

Now I know that many of the support group members also read this blog, and I want to assure you that I am not writing this to complain or to indicate any sort of disapproval. It’s totally okay! Some of you e-mailed to let me know that you would be out of town or otherwise engaged or might not have childcare. And while kids are always welcome to attend the meetings, I completely understand if you, the parent, would rather not have your child there, for whatever reason. Believe me, as a long-time single parent, I understand! I know how it is when you just want to get out of the house by yourself, but can’t. And I definitely know Busy. Busy and I have been hanging out too much together lately, I’m afraid. I know how it is when you just can’t add one more thing. When you’re so busy that it wouldn’t be a break to attend the meeting, and a break is the thing you need most.

And I know how it is to need a break from autism. Not necessarily from your child who has it (although that is often the case!), but from the barrage of all things autism – books, DVDs, news stories, events, meetings. I’ll be the first to raise my hand and say that I’ve often felt this way! Coming up on thirteen years post diagnosis, I sometimes feel over-aware. Saturated. Not to mention tired. All of us feel this way more often than not; it comes with the territory. And so, we need a break from autism. And it’s understandable to feel a bit “over” the idea of Autism Awareness Month.

Tonight, I waited in the meeting room for twenty minutes, metaphorically shrugged my shoulders, packed up all of the autism stuff, and ate some Easter candy as I drove home. And I thought about the fact that the people who most need a break from autism don’t get one. Every day our kids must contend with painful sensory issues, communication difficulties, social misunderstandings, vulnerability, and many other issues described so well by my friend, Jess, who wrote this post that I highly recommend you read. And I highly recommend that you pass it along to your friends and relatives. Because so often we talk about what autism is, but we don’t always talk in specific terms about how it really is for our children. And once people can grasp that, wrap their minds around the reality of it, I think it will make a tremendous difference in how they view our kids and this thing called autism. That’s what I think Autism Awareness Month is for. I’m aware. You’re aware. But there’s a world of people out there who aren’t.

A Little Hope

Yesterday I attended the first family-centered support group meeting for ASD families in southern Oregon. I’ve previously attended other support groups for parents, and they were always welcoming, but I felt like something was missing. I would leave without feeling better than when I had arrived. It wasn’t the type of support group I was looking for.

This one yesterday was different. It was so affirming to have the kids there. The parents, the ASD kids, and the siblings all there, all interacting – it just felt right. I met other parents also at the teen stage as well as others just starting out. The level of understanding was inherent, as was the bond. I saw tiredness on some of their faces, and stress. But I also saw hope.

And the hope was there because the older kids were there. I saw some young parents watching Nigel, and that gave me a sense of pride. Because I know how far he’s come. I still have many concerns about the future, of course. But if Nigel, just as he is, can give some young parents hope for their child’s development, that’s something. That’s really something.

I did the same thing when I went to the autism and puberty seminar that I attended in October. One of the presenters at the seminar was a higher-functioning autistic adult. All the parents were rapt as we listened to her, watched her, absorbed her. She was hope to us, those of us with teens. She patiently answered questions, related stories of her childhood and teenage years, what she had been like. We all wanted to know when she had started talking so that we could compare that to our own children’s past development, and look ahead to how far she progressed, thinking that the potential was there for our kids. Of course, there are no guarantees, and we know that. But still. We hope.

If you ever have the opportunity to attend a seminar where an autistic adult will be presenting, I encourage you to do so. You will come away with a sense of understanding that you couldn’t possibly get from reading a book. You can’t look at that person and think, That’s what my kid could be like. But looking at them and just experiencing their presence will give you hope. And we could all use a little more of that.