Autsim definition redefined and narrowed. Thoughts?

[journeymom]

Peggy O'Mara discussed the issue in her latest column: http://mothering.com/peggyomara/

And I came across this today:  http://www.nytimes.com/2012/02/01/opinion/i-had-asperger-syndrome-briefly.html

I feel for parents facing a possible sort of disenfranchisement of their children.  My head would be reeling.

This guy can only describe his own experience.  His story doesn't prove anything other than his mom made a well-intentioned mistake. 

But I can't agree with this assessment, from Peggy's column: Deciding to count only some but not all of the children on the autism spectrum is no different than deciding to count some but not all of the children who get hit by a car.

It isn't like deciding to count only some, but not all children who get hit by cars.  It's like narrowing the definition of a car crash. Some children were hit by cars.  Some children were hit by... they don't know what, yet.  But it's not a car.

[serenbat]

I saw this yesterday and think it is a great start to a long over due conversation

and I won't agree - 

 His story doesn't prove anything other than his mom made a well-intentioned mistake. 

 I don’t want a kid with mild autism to go untreated. But I don’t want a school psychologist to give a clumsy, lonely teenager a description of his mind that isn’t true.

seems like many hands stir the pot

know a similar Asperger's that was misdiagnosed I greatly favor the new "guidelines"

[ErinYay]

She lost me at the vaccine nonsense, so, you know, immediately.

[FarmerBeth]

I only read the bottom link, not Peggy 0'Mara's discussion.  I got where the misdiagnosed guy was coming from.  The only thing is, you don't need a diagnoses to be told you aren't hardwired to do certain things.  Lot's of teens get told "You just aren't a people person.  Stick to computers" or whatever.  People like to categorize.  Any labeled or unlabeled person should be told what they need to work on, not told what they can or can't do, because time and personal differences affect this.  All therapists, teachers, cousellors and other influential people need to be aware.

I think the narrowed definition would be OK if people could be helped and counseled without the ASD label.  I am blown away at the level of help I got offered this year over a diagnoses for my son.  I figure he should have been offered the same amount of help considering his ability to manage school and simple activities like going to a family gathering were significantly impaired.  An ADD (now overturned) diagnoses with OCD, tics, anxiety and NVLD was serious enough, one would think, but while he got help, it was not nearly to the extent of what we had offered this year.  What needs to change is that children should be given therapy based on needs, not on specific labels.

[journeymom]

Originally Posted by FarmerBeth 

 What needs to change is that children should be given therapy based on needs, not on specific labels.

Amen!!

[fizgig]

As I'm watching the conversations about this issue unfold I'm developing pretty strong feelings in favor or these changes to the DSM.

There are many, many non-spectrum disorders that can look like autism but aren't.  Hearing loss, language disorders, and other developmental delays can all cause reduced eye contact, language delays, and stereotypical physical behaviors like toe walking or hand flapping.  The new criteria will make it a little bit less likely that kids who aren't on the spectrum can get a correct diagnosis.   If many kids are getting placed on the spectrum when they shouldn't, then we need to correct that.  Really, its the idea that only spectrum kids need services that is the problem here.  People "want" the diagnosis because they want services. 

This is personal for me because DS has a severe language disorder and I am really, really sick of having to convince every new professional we deal with that he is not on the spectrum.  They eventually see for themselves, but we struggle over and over again with therapists, teachers, and doctors wanting to address the wrong problems because they misunderstand what is going on with DS.  My DS needs massive language intervention but really doesn't need help with social skills and pretend play so therapists are just wasting time working on those issues.  Having an accurate diagnosis is how we can best help all kids.  However I have had numerous individuals suggest I accept an incorrect diagnosis because it would just make "everything easier."

I guess the question for me is, will the DSM change really increase accuracy in diagnoses?   Or is this just going to provide some with an excuse to save money and cut kids off from services they need because they are no longer on the spectrum? I have no idea how these new criteria are really going to impact the ways that doctors and other professionals diagnose and treat disorders and neural differences.

[fizgig]

Originally Posted by journeymom 

Amen!!

Also, I'll second this amen!

[FarmerBeth]

I just looked at the proposed changes and I have to say it wouldn't affect my son having been diagnosed, and he wasn't a particularly obvious case.  I don't think the changes are to the extent that children wouldn't get diagnosed, in fact, I'd say some kids with an NVLD or Semantic Pragmatic Disorder could still qualify if it was felt ASD was a better fit.  It didn't look too restrictive to me, just more clear. (or at least, I found it easier to understand than the DSM IV).  It does seem to define the difference between language disorders and autism better than the previous.  In this case, if a child's social skills were strong, then they wouldn't be looking at autism.  (Like fizgig, my youngest son has a non autism language disorder.  He would almost 100% not fall into any of this DSM for autism).

[Piglet68]

I'm a bit concerned about these changes. Not for DS - he's pretty classic in his symptoms. But DD is on the list to get evaluated for Asperger's. It's already difficult for girls to get accurate diagnoses because they manifest differently than boys do, they develop pretty good coping skills on the surface that mask emotional issues underneath. Tony Attwood has written some good stuff about this. So I'm not convinced that she will "pass" an evaluation, particularly since you really need to see her with other kids to see her social disabilities. 

But the truth is, funding is a huge issue and I think no discussion of this topic can be complete without it. I'll third the AMEN to the previous poster. Really, she hit the nail on the head. 

If not getting an Asperger's diagnosis (but getting some other diagnosis instead) meant DD would have access to the same level of funding and programs that DS does, I could care less what label they want to stick on her. 

I'm suspicious that this change in criteria is more about governments saving money than anything else. But then I don't know many people who are fighting an autism diagnosis. I do know people who are fighting to *get* one. So perhaps this biases my view.

[Village Mama]

My eldest just received an Aspergers diagnosis... I don't think that he will lose his as he still seems to meet the new criteria( It even seems like the psych worded everything so that it will be clear when things change as well). It will all be pretty subjective I bet. It will be nice when there are descriptions out there for parents translated  into " parent speak". Then it all seems much clearer when you understand the breakdown of the wording( even if it seems simple, that doesn't  mean that it is completely  clear) I found the documents out there online for parents were super helpful .... withe the original wording I questioned whether or not my son would fit, but with the breakdown of each phrase and the behaviors that it encompassed it was a much more clear fit. . Met with the Government branch that deals with the autism funding and they didn't bring it up as a concern or anything.

It feels pretty unfair to say that there are so many overdiagnosis... it seems like a super super thorough process to me. Everything from early development , to the actual breakdown of strengths and weaknesses through the psych ed eval , plus the ADRI, ADOS, OT assessments... it is really clear that there is something going on  with these kids. It is not like they self diagnosed with an internet checklist and the doctor just signed off or something!... To some outsiders my son just seems super smart, quirky and socially not so up to speed. What we deal with in the home and what he deals with internally is brutal though. It sucks that people are getting the impression that it is a " diagnosis du jour "...