Feb 15, 2012

Redefining Autism, a Parent’s Fear

I’m taking a step away from my normal inane banter (don’t worry, it won’t be for long) to discuss something that my family, along with many of our friends, find worrisome. The American Psychiatric Association is apparently getting ready to release a new revision of the Diagnostic and Statistical Manual of Mental Disorders. This in of itself is not the worry. After all, if we didn’t constantly revise these things, we’d still be giving each other ice pick lobotomies...and what fun would that be?

No, what’s disturbing is that the APA is revising and, according to the preliminary data being cited, narrowing their definition on autism. The fear that parents, such as myself, have is that the new definition could declassify higher functioning autistics as well as those suffering from Aspergers Syndrome. This is a matter that hits home for my family as two of my children, Misery and Chaos for you Twitter followers, are autistic. While both are lower on the spectrum than Aspergers children, they’re still considered high functioning and are potentially at risk under this new classification.

There are multiple reasons why parents of special needs children are worried about this. For starters, the financial implications could be potentially disastrous to some. Under the new definition, insurance companies (not the most understanding of folk under the best of circumstances) could potentially cut off much needed therapy for many families. This would be further compounded by the potential of losing state provided services and benefits. Trust me when I say it’s difficult enough right now to get these services. I can’t speak for every town, but the one I live in has a nasty habit of considering budgetary impact before the needs of the children. We currently homeschool Chaos because our school district has fought us at every turn in this regard, always opting for lesser services over those our pediatrician (and other specialists) have called for. What will happen under this new definition?

The social aspect is potentially even more frightening. A reclassification could lead to some children being taken out of the special needs classrooms they currently attend and being put into the mainstream. If you’re like me, you remember school and how much like shark infested waters it was. The weakest of the normal kids often wind up being victims of the cruelties others can inflict. How so will children lacking even the basest of social defenses fare? We have friends who have attempted to mainstream their high-functioning children. The results have not been encouraging. While I want my children to lead as normal of a life as possible, I think I speak for many when I say I have no desire for their learning experience to involve being tossed into a meat grinder.

Yet all of that potentially looms over our heads, like the Sword of Damocles, when this new definition comes out. I’m fairly sure we’re not the only parents losing sleep over this. So we watch and wait, hoping that this all turns out to be yet another thing overblown by the media. If not, I fear that the new definition will do little more than further the cause of those hoping to save a few dollars. Sadly, these savings will only come at the expense of children who can’t fight back and may never even be given the chance, should this come to pass.


Anonymous said...

Pardon my language here if it offends, but that's really shitty. I hope grandfathering at least comes into ply, but even if it does, redefining these things helps no one but the insurance companies. Will you guys be all right? I hope so.

Rick G said...

Thanks, Josh! I don't think there's such a thing as grandfathering in cases like this. My biggest fear for us is losing Misery's placement in the absolutely fabulous school he's in. He's not ready for mainstreaming and our town's program, in a word, sucks. Outside of that, though, I'm more worried about other families. We have friends who would probably be hit much harder.

laurathomas said...

This is worrisome. My son was first diagnosed with autism but later changed to Severe Anxiety disorder with catastrophic thinking. They were eating him alive in school. he now goes to a special needs school and is thriving! I have fought hard for this and cannot afford further expense. What little is covered by insurance keeps our heads above water. It's is all about THE DOLLAR!

Rick G said...

I feel for you, and I'm definitely keeping my fingers crossed that this turns out to be nothing more than a scare for us. But you're right about the dollars. It always comes down to that. The case workers in my town utterly disgust me the way they'll always conveniently suggest the absolute cheapest solution to my kids' issues regardless of what their IEP or diagnosis calls for.

Crazy Life of a Writing Mom said...

I can't imagine! I'll be praying. It really sucks that people have to mess with things like this!

Rick G said...

Yes, it definitely sucks with a capital S. We're beginning to feel like General Patton and MacArthur here...we've gone to war over this so many times already. The "fun" never ends I tell you.

Crazy Life of a Writing Mom said...

P. S. You were mentioned on one of my favorite blogs today. :) Here's that link:

Rick G said...

Wow that is seriously cool! Thanks for the heads up, Elisa!

Toby Neal said...

Hey Rick, so glad I came into your blog at a time like this. What you may not know about me is that I'm a child/adolescent therapist in public (school) practice as a Behavior Therapist and work at two private clinics as well. Many of the children I serve are on the spectrum, and I too am very worried about the future. I see this as as a reactive measure by lobbied psychiatrists in response to the explosion of identification of autism in the general population. you can't work in a school for long without noticing how much more frequently it's occurring.
Parent advocacy and autism advocacy groups are the only thing standing between broke states, costcutting insurance companies, and kids with needs. Keep it up, Rick!
I'm actually too busy in my work and wish I weren't...but I can't stand to turn away kids in need. Its tough times all round as we in public get higher and higher caseloads, and in private, fewer and fewer sessions. Advocacy is the only answer.

Rick G said...

Thanks Toby! Awesome to know (and I promise not to abuse the knowledge with tons of questions :) . I had likewise read some info that the new definition was to help stem the tide of autism diagnoses. While I find this motivation a bit questionable, I can also see the benefit of getting more a more specific diagnosis.

The screwjob here is going to come in the form of insurance companies with very narrow definitions as to what types of disorders are covered for therapy as well as local governments that are trying to keep within budget. Unfortunately the victims will be children.

Don't worry, nobody I know is ready to give up the fight quite yet. :)

Nigel Bird said...

It's such an enormous subject and it's a fluid piece of science, I guess. The spectrum, by definition, is very broad indeed and all the autistic children I've worked with have been as individual in their needs as any other. The key to it all is that 4research continues and that provisions are made for pupils whatever their need.
I can see why you have concerns - the pound and the dollar will always rule and it's a shame that money inhibits our resources in education and resource terms.
I'd be interested in reading the document, anyway. I guess we all need to keep well-informed and to fight where we feel the gaps are appearing.