Tuesday, June 05, 2007

A New Start

This post is for the many readers who have been coming to this blog on a search for "Evan O'Dorney and autism" (or suchlike). As I wrote in both my conclusion to my live bee blog post as well as in the comment section, I am neither professionally qualified to diagnose Evan nor personally willing to render the kind of assessment (on the basis of a few minutes' observation, in exceptional circumstances) that Evan and his loving family may not be prepared to hear. (And for all we know, they're fully on board, and merely choosing not to lead with that information -- to which I say, fair play.)

Rather, I, like you (and all for our various reasons), need to learn more. No doubt our concern for and about Evan prompted these searches. But wherever his journey leads him -- to math camp, hours spent "expressing himself" at the piano, and hopefully time well-spent with family and friends -- we can all benefit from a little more understanding.

So here are some resources on Autistic Spectrum Disorder, sometimes known as Pervasive Developmental Disorder. As I confessed in a comment, I have not read all of these exhaustively (and again, am not professionally qualified to rank them). In selecting what to put here, I have prioritized those sites and resources that contain information related to the identification and diagnosis of autism as well as its treatment and other forms of support.

Given the context in which we're approaching this issue, it seems appropriate to start with some definitions. Here are links to the (US) National Institutes of Health, the (UK) National Association of Mental Health, and the Autism Society Canada, each of which give fairly comprehensive overviews of the condition (and its related conditions) as well as information on resources in each country.

As for books, I can recommend Quirky Kids (suggested by our neurologist back in Chicago), and a pamphlet called "Talkability: People Skills for Verbal Children on the Autism Spectrum," available through The Hanen Centre (and which came recommended by the speech therapist on my son's "team"). The former speaks more generally about kids with developmental disorders, and the latter gives practical advice for helping kids with autism "connect" in a day-to-day setting.

I have not read, but am interested in reading, the following: Ten Things Every Child With Autism Wishes You Knew, and Ten Things Your Student With Autism Wishes You Knew; 1001 Great Ideas for Teaching and Raising Children With Autism Spectrum Disorders (which seems overwhelming, but would appear to appeal to Evan's interests in math!); and the work of Temple Grandin.

Resources online include Autism Inspiration and ABA Child (clearinghouses for information, materials, and strategies), The Autism Acceptance Project (which promotes public awareness about autism), and The Autistic Self-Advocacy Project (which provides resources and support for adults with autism).

If you live in Kingston or Ontario (I've got to help out my neighbours; after all, it's been plenty hard for us to learn the system here), there is the Autism Intervention Program at Pathways; the Play-Talk Program at the Child Development Centre at the Hotel Dieu; and if you have young children in need of pre-school or child care, Community Living Kingston will help support the program you select, and has an excellent resource handbook for "Services for Children with Special Needs." I have yet to check out Autism Ontario, and a new program called Leaps and Bounds.

Finally, it wouldn't be right for me not to point all of you to blogs, which, as with blogs generally, provide the salve of recognition and understanding (dare I say connection?) that professional sources may not supply. The Autism Hub claims to collect "the best of autism blogging" (though I have yet to spend decent time with it, to make the match that's right for me). I do hope to follow the recently launched Normal is Overrated, written by "Cody" (who also blogs at Cody's Journal), and as I noted, I am starting my own, but writing it anonymously (so get in touch -- there's an email link in the Profile -- if you'd like to follow it).

This list is just a start, but I hope it is helpful to you. I am grateful to any of you who write in with other resources, and grateful to Evan O'Dorney, too, for inspiring us all to learn a little bit more about ourselves and one another, indeed the many different ways we all learn and communicate.

Coming up: a post-bee wrap-up relating today's competition to debates about spelling in early modern England; and my contribution to Horace's compilation (at To Delight and Instruct) of advice posts to those either starting or considering grad school. He's collected a worthy crop so far, and to be commended to undertaking the task. It seems only apt for me to discuss (and I think I can say I am qualified here) grad school, academia, and family concerns (i.e., bearing and raising children). Even more apt? That I can't write that post right now . . . the kids are screaming!

More soon.


Barbara said...

Can you give more info about the Hanan's Institute pamphlet on TALKABILITY? Thanks for the info on Quirky Kids. I just ordered it. Dr. Klass writes a column for a medical magazine and I enjoy her articles. I tried to get more info on the pamphlet you mentio, however, and could only find a book by Fern Sussman at a cost of over $99.00 U.S. I've never written in a blog - so if this is not the customary way, please accept my advance apology. I'm a novice grandmother who's grandson was recently diagnosed with PDD-NOS and trying to learn the difference between this and Asperger's. NanaBBB


Dear NanaB,

So glad you've come, and I hope I can help.

Many of my colleagues will agree (in another context) that the best way to learn something is to teach it, so thanks to you and to all the readers who have come here and helped me get up to speed on all this. I've learned alot in the past couple of days.

As for "Talkability," click here, which should bring up the Hanen resources, where "Talkability" is on the top. Press Order, then you'll be given an option for which country, and it should be around USA$49.99; still not cheap, I know, but better than Amazon.

Let me know how it works out, and if there's anything else I can do to help. All the best to your grandson and his family.


P.S. Take heart that we're all perpetually novices in this, and that, as I try to remind myself, it seems much worse to us than it is to them (i.e., to the kids). Strength and courage, NanaB.


PS to Nana

That sense of dis-ease that you're feeling, about writing in a blog when you never have, and aren't sure what the rules are, what you should or shouldn't say or do . . .

If you think about it, that sensation is not unlike what your grandson and my son regularly experience -- indeed what we *all experience at one point, many points, throughout our lives.

These kinds of kids, and eventually adults, merely don't have whatever biology/sociology/whatever-ology gives them to read those kinds of signs as quickly or acutely . . .

The experience has taught me an awful lot not only about interpersonal communication, but also about perception and learning (which I like to think helps me in all areas of my life, not just that with my son).

But that sense of disorientation, and the resulting insecurity . . . . I try to hang on to that, and what it must feel like, when I see my son reacting "oddly" to a situation . . . so I can relate to what he's perceiving and help him through it.

(Thanks again.)

Barbara said...

Dear Gwynn, I decided to check back before I shut down for the night and thank you for your kind words and encouragement - and - the info on Talkability. I gather that communication is via this site and not individual emails. I will try to remember to check back periodocally, otherwise I get alerts from GOOGLE which is how I got to see your original posting.
I wish my daughter was "at a place" with the diagnosis and the rest of her life to particpate in such on line support, but for now, she's not interested. Hopefully time will help her sort things out.
My email address is bbbass@bellsouth.net should you want to write me outside of this site. Hope it's OK to have given this.
My thoughts are with you and all others who share these unique experiences with their children. As I live thousands of miles away from my daughter and her family, I don't get to see and interact with this grandson as much as I want to. Such is Life - complicated relationships, and at 64 I find I have so much to learn. Hopefully yours, B