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Proposed Change in Asperger's Syndrome Diagnosis - Part 2
Thanks everyone for joining me in my celebration of my 100th post yesterday! I'm going to get back to each and everyone of you. I hope you'll grant me some grace and understand my AWOL (Absent Without Leave) this weekend. I have to get caught up on a few things. I'll be back Monday in full force and leaving you comments on your blogs! Monday I'll draw winners from yesterday's celebrations. And I'm still waiting to get to that nice round number of 100 followers!. And yes, Niksmom, I'm still loving you. Your name is in my random.org drawing. SupraMommy we paid an artist at Busch Gardens to do a cartoon of Jonathan. So this is actually a photo of the picture. I hate the "pickle" I unaffectionately refer to him at "an evil eel."
Thank you for all your comments from Friday's post. To bring new readers up to speed with the rest of us, we were discussing a New Year Times article regarding a proposed change in the Diagnostic Standards Manual (DSM-V). The current review committee suggests folding Aspergers Syndrome (AS) into an overall diagnosis of autism. All your comments, other blog posts and autism forums give me things to think about. Menopausal New Mom voiced my main concern:
Thank you for all your comments from Friday's post. To bring new readers up to speed with the rest of us, we were discussing a New Year Times article regarding a proposed change in the Diagnostic Standards Manual (DSM-V). The current review committee suggests folding Aspergers Syndrome (AS) into an overall diagnosis of autism. All your comments, other blog posts and autism forums give me things to think about. Menopausal New Mom voiced my main concern:
"And because I have an insurance background, I would be worried about the decision makers in their ivory towers looking for a way to exclude benefits for some of those levels."
About a year ago two men had lunch together and decided it made more sense for a project to be under one department rather than the other. They left the restaurant having made the decision without consulting anyone. One of lunch partners sent out an email to the half a dozen organizations affected by the decision. The tone of the mail was "Rather than it being sunny tomorrow, it will be cloudy. No big deal."
Those who read the email immediately understood the far reach implications of the lunch time decision. The email said to them, "The sun is not coming up tomorrow. We have a lot of contingency plans in place, but the sun not rising wasn't something we ever considered. It's now every man for himself."
This is taking creative license with a true story of what happened to Scott last year. I don't pretend to know anything about his job and I don't pretend to want to know. However, Scott came home that day knowing he no longer headed up a project he'd been running the last three years. His company also understood the implications of the lunchtime decision. By the next day the other half a dozen companies and organizations, (which worked jointly on this project) also understood my husband no longer worked on the project or headed the project. My husband received four or five job offers from these other organizations because they wanted to ensure my husband still headed the project. While it was comforting that my husband would walk away with a job, it was stressful as he spent rest of the week trying to make a decision which wouldn't disrupt the rest of the family. In the end, he stayed with his original company and client, but no longer headed the project, it was a disappointment for him, but a decision which was best for the family.
This is my fear, people will make a decision which makes sense to them but creates a domino affect of unintended consequences. I understand some believe that Asperger's, PPD-NOS and other mild forms of autism will start receiving services not currently covered. However, to my knowledge, there are no representatives from insurance companies sitting on this review committee. There is no guarantee. Right now, Jonathan is finally receiving services originally denied. What will a change in the DSM-V mean?
On the other hand, we barely receive an Individualized Educational Plan for Jonathan. Originally a diagnosis of Asperger's did not warrant an IEP. The school did eventually find him eligible to receive special education services under an "autism" and speech and language disability.
Again, thank you for your thoughtful input. I'll be reading and researching over the next couple of months. And I hope you will join me in the public comment period in January. Let's remind each other of this.
* * * * * * * * *
Jonathan: Mom, guess what Jonathan K had on his t-shirt?
Me: I don't know, what?
Jonathan gets a piece of paper and writes, "Speeeling iz mi best subgect."
Jonathan: Isn't that funny?
Me: Yes. It is.
Jonathan: He has another t-shirt that says this.
He writes on another piece of paper "Math is my worst subject 2+2=4, 8+8=16, 100+500=600."
Jonathan: Shouldn't it be the other way around?
Me: It would seem that it should.
Jonathan: I'm afraid for Jonathan K if spelling his is best subject. What does that say about his math and reading?
Me: ?
7 comments:
As retired Special Ed. I am floored that Jonathan did not qualify for an IEP. I've only been out of the loop four years. I don't remember if I told you my last Asperger's student in now in college on the deans list.
Have a great weekend and I pray that everything falls into place and your little dude gets all the support he is entitled to.
"Originally a diagnosis of Asperger's did not warrant an IEP. The school did eventually find him eligible to receive special education services under an "autism" and speech and language disability." As an educator for more than 14 years, this really surprises me. I hope you get the answers and services your son deserves.
Thank you for a very thoughtful post. Your concerns are my concerns.
My fear is that no matter what the diagnoses end up being, insurance companies and educational institutions will always look for loopholes. Isn't that terrible?
Corrie, great analogy on the DSM upset reagrding autism/Aspergers. I also want to add that most states use the "health impaired" category for disabilities that don't quite fit anywhere else. And Aperger's Syndrome is certainly a health impairment. Disability: Check. Need of specially designed instruction: Check. IEP: Check. Wish I could make little check marks!
"people will make a decision which makes sense to them but creates a domino affect of unintended consequences." - I think you hit the nail on the head with that one!
I have to jump in here on the Aspie/IEP and Aspie/health impairment issue. Becuase we've seen how it' plays out in OUR state and it is not as the others suggest. Sadly, it's true.
In my state, a "medical" diagnosis does not equate to an educational diagnosis. There's sufficient vagueness in IDEA2004 which allows schools to determine if the diagnosis hinders the child's ACCESS to free appropriate public education. Imagine my surprise when my 3 yr old non-verbal child w/PDD-NOS (diagnosed by 3 neurologists and a developmental pediatrician) didn't qualify for the state autism program b/c the evaluators with the school disctrict deemed him "too social" to meet the criteria. Yes, he's "social" in that he likes to be around people but he has no idea of how to interact appropriately with them.
When we pushed back regarding the medical diagnoses, we were told "Oh, that's the medical model and we're looking at the educational model." They split that hair finely on many points.
The only reason he qualified for an IEP was his diagnosis of Cerebral Palsy. While he has definite impairments from it, it's mild compared to the autism. They used this to deny certain services which he really does need.
Did I mention we're now homeschooling my 6 year old? And that CP? Thank goodness for it bc it is what allows our insurance to cover twice weekly PT/OT and speech. School would only provide 15 minutes per week...usually in a group setting.
My rambling point is that just b/c somethign is considered a "health impairment" by medical professionals does not mean schools have to agree or follow the recommendations of doctors.
I am concerned that this new medical bill just passed in congress might draw money away from services for kids like ours, because the cost of it will mean more healthcare for more people, but not more coverage for mental health, or social services.
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