by Tim on November 5, 2009
It’s that time again when they update us on the progress of how the clinical definitions of autism may be redefined in the next version of the Diagnostic and Statistical Manual of Mental Disorders, or DSM. (Read more about this in our The Clinical Definitions of Autism, Asperger’s, and PDD-NOS post from a while back.)
The Neurodevelopmental Disorders working group for the DSM-V (V = 5th Edition) has an interesting list of issues related to ASDs that they are trying to reach conclusions on before the 2012 target date. (Note this is an older version of the list, but it’s still a fascinating read.) To say that whatever is ultimately approved for inclusion in this manual will affect the lives of both parents of autistic children and autistic persons is a serious understatement.
There has already been a lot of commentary and some controversy about this process. It does seem, however, that the working group assigned to revise the DSM for autism have tried to be methodical. careful, and sensitive to all the issues involved. Honestly, I think they were given an almost impossible task here. We won’t really know how well they succeeded until we see the first draft.
This NY Times article describes the latest controversial issue in this process as well as some ongoing ones. This most recent one has already drawn a ton of reaction and might easily be among the most talked about when the draft is released.
The big question being discussed now is whether Asperger’s as a specific, separate diagnosis will be left out of the next DSM. ‘PDD-NOS’ may also be going away. Without the draft actually existing yet, it’s hard to really dig into the real-world meaning of this, but for whatever these are worth, here are my comments about this and some other points.
[click to continue…]
by Tim on September 14, 2009
If your child is one of the 123,145,845,318 (give or take a few) autistic children who are fanatical about Thomas the Tank Engine, then your child’s ability to be flexible with change is about to be put to a serious test.
For reasons completely unknowable, the makers of Thomas the Tank Engine have decided to give him an extreme makeover. Going from the very 2-dimensional-looking Thomas-iverse to a high-tech, computer-generated, whatever-it-is seems radical enough, but he’s going to talk too?! (Go there and read the ABC interview with Thomas – not kidding. I saw it on TV myself. I dare you!)
It all hits the fan with the release of Hero of the Rails – The Movie on DVD.
Before
After
We honestly consider ourselves lucky that the J-Man couldn’t care less about Thomas. I confess I’ve recorded a couple of episodes just to see whether he’d even look at it. Nada. Phew.
But I know that Thomas is deity-like in the lives of many autistic children, and the lives of countless parents orbit around Thomas and Friends as a result. We just wanted to warn you all… Consider this our public service announcement.
(An oxygen mask will drop from the ceiling in front of you shortly. Good luck.)
With all the making-way-for-baby chaos around here, posts will continue to be sparser than usual. I may be doing a fair amount of “Here’s an interesting thing I read” type posts for a while until he arrives and things settle to whatever the new ‘normal’ equilibrium will be around here.
An old friend of mine whom I haven’t talked to since before there was an Internet (!! – Behold the power of Facebook!) sent me this article. This NY Times piece – called “A Roller Coaster to Acceptance of a Son’s Autism” – offers a counter-melody to most of the articles published about autism these days, though hopefully this imbalance will right itself at some point.
Whereas most media attention is currently focused on young children with autism and everything that orbits around that, the Lehmann family in this article invites us into what I’ve taken to calling the ‘long view of autism’. The J-Man is about 3 1/2, and we tend to naturally fall in together with parents whose children are within a couple of years of him. I imagine this sort of thing happens everywhere.
Our end of the curve has a lot of people in it, and we congregate together. There are many benefits to this, of course, but there’s at least one major weakness. Our attentions and focus are often elsewhere while the people who are way further up the road from us – already where we may be heading years from now – are telling their stories.
What speaks to me most in this article is that the emotions she describes from the time over two decades ago when her son was diagnosed sound so much like the stories we tell and are still very near to. Parents of older autistic children and autistic adults are rather like our Magellans. They’re far beyond our horizon, exploring the other side of our world – a world we cannot possibly imagine yet for our children given how immediate everything in our lives is. They remind us that they remember where we are now, and then go on to tell us what adventures await us and how to navigate the challenges to come. And we would do well to listen.
Whether she intended this or not, I don’t know, but I think Lehmann’s article calls us to a reflection that many of us are reluctant to sit with for long. When we imagine our children 20 years from now, what possibilities do we see? Do they make you happy or depressed or worried or proud or any of an infinite number of emotions?
If we’re honest with ourselves, this often is a raw place within us we’d rather avoid right now. We barely know what we’re doing tomorrow let alone 20 years from now. The future is completely unknowable, our kids have very few years under their belts, we still feel like complete noobs at this, days can feel completely out of control, and our lives already feel full of too many uncertainties.
We want so much for our children, and we know their paths will not be easy. Does any of that affect how proud I am of our son? Absolutely not one bit. But there are many days where I’d eat a bowl of broken glass if I could ease his recently-escalating sensory struggles, among other things. We do what it takes to help our kids realize every possibility and potential that is theirs. Yet, no matter how much we’ve welcomed autism into the identity of our family, I’d bet that most, if not all of us, would give anything to know that things will someday get easier for our kids.
But we have those like the family in this article who have travelled one of those paths, and for today, hearing their story is comforting enough for me.
by Tim on December 10, 2008
I used a lot of climbing imagery in my “What if he never talks?” post a few days ago. For me it captures the often difficult and slow – but steady – progress we make as we try to climb upward that little bit at a time.
And this young man goes out and shows us how climbing is done right.
A 12-year-old boy with special educational needs is believed to be the youngest person ever to trek to the base camp of the highest mountain in the world.
Winton School student Joshua Wilson’s achievement in reaching the Everest landmark is all the more remarkable because he suffers from the learning disability, autism.
How great is that! But it gets even better. In the words of his mother,
Josh had a breakdown four years ago and wouldn’t leave the house. He’s quite shy and his autism tends to be quite debilitating for him.
[...]
He has come back from his trip a different boy. He has a lot more self-confidence and was able to give a presentation on Everest at school. I’m so proud of him.
[From the Bournemouth Daily Echo]
That gave me chills and tears and a big ol’ smile.
Now that, my friends, is how it’s done.
by Tim on November 25, 2008
by Tim on November 24, 2008
Tomorrow we (hopefully) will find out the sex and/or gender of the baby!
Mary’s having the mack-daddy ultrasound, so unless the tech is an idiot, surely to God we’ll find out. More important is finding out that the little one is safe and healthy and well.
Hold good thoughts for us, and check back tomorrow for the news!
