Gifted Issues Discussion homepage Forums Twice Exceptional "New Definition of Autism May Exclude Many"

The chair of the task force admits that the change is about saving money:

http://www.nytimes.com/2012/01/21/u...me-parents-watch-closely.html?ref=health

Thanks for the additional piece. I'd love to have been on a fly on the wall when this was decided. I do think that our understanding of the autsim spectrum is hazy at best.

This article should be put in context. Special education has become a money pit. Schools are mandated to provide all necessary services REGARDLESS of cost. I don't think cost should ever be ignored -- there are always competing uses for the money. I agree with the "pro" side of the article.

http://bigthink.com/ideas/22915?page=all
Cut Special Education
by Andrew Dermont
August 24, 2010

I don't favor increasing overall spending on education, but I do think the ratio of funding to special ed and gifted ed is much too high.

Cost should be a factor in choosing the particular implementation to satisfy a need, but it can't be any consideration in deciding a child's educational needs; it should be ignored in that context, as long as our society makes a free public education available to every child.

As this is a topic near and dear to my heart, I've looked into the neurobiology and genetics a bit, and I think that the actual science is showing us a much different perspective than the proposed DSM-V revision would suggest. It's pretty clear that Asperger's Syndrome, "classic" autism, NVLD, PDD-NOS and Childhood Disintegrative Disorder, far from being all the same thing, are associated with different groups of genetic defects that have different consequences on neurological development (with some of them being related to auto-immunity against microglia, others affecting the dopamine system, some affecting cerebellar development, etc.,) and that they have very different clinical presentations, although they share some common features. Some of the "spectrum" effect is due to individual interaction with environmental factors, and some is due to some individuals having multiple gene polymorphisms.

Diagnosis means "to know between", and diagnostic categories should highlight, not obscure, clinically meaningful differences, so that finding the appropriate diagnosis automatically directs clinicians toward appropriate treatment strategies. The appropriate interventions for a highly verbal, uncoordinated individual with Asperger's who, as is typical with Asperger's, has difficulties with visual processing and visual-motor integration are very, very different from those that would be appropriate for a non-verbal individual with classic autism who has visual-spatial strengths, and lumping the two of them together does not make sense either from a clinical or neuro-biological perspective.

Very interesting perspective, aculady--would like to hear more. While I'm far from an expert on any of this, it's certainly a subject of interest to me, and I do have this feling like all the experts are sort of still in the "blind man describing an elephant" stage.

Some light reading on the topic:

http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0019067

http://www.ncbi.nlm.nih.gov/pubmed/22037176

http://www.ncbi.nlm.nih.gov/pubmed/21786105

https://www.nimhgenetics.org/publications/pdf/gharani04.pdf

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2922278/

http://www.hindawi.com/journals/aurt/2011/398636/

Well put, Aculady, as usual.

At the same time, the existence of Asperger's as a "syndrome" dooms any treatment plan based on the diagnosis itself; it's a collection of traits, of which the affected individual has a subset, and you have to look at each trait in the subset to choose appropriate therapies to address each particular one. One size does not fit all in the autism world, IMO, not even if diagnosticians are doing a good job.

The new lumping only makes this problem worse.

DeeDee

Thanks for those links AcuLady. A lot of it went over my head and I will need to go back and re-read properly when I have more time.

My DD went for an assessment with an ASD specialist team a week and a half ago and she was so borderline that they were unable to make the call. They are going to observe her at school, in about 6 weeks time, before deciding. If she does cross the line I have the impression that they will be calling it Aspergers. But I do wonder intermittently if HFA might be more appropriate. She has visual processing issues, now somewhat resolved, and struggles to learn gross motor skills, but she also has distinct language based quirks that pull her verbal IQ down. I think she's more spatially than verbally gifted (thinking, not physically). Her most recent IQ test was the SB5, which is a much better fit for her strengths so we had it done to point out to school that she does actually have strengths too. The interesting thing was that the SB5 allowed her to really show her visual spatial strength, which the WISC did not, and in her areas of strength her scaled scores in the NV were 2-3 points higher than her V (ie a full SD or close to it).

Nonverbal IQ 132 / 98th
Verbal IQ 127 / 96th
Full Scale IQ 131 / 98th


NV Fluid Reasoning (routing) 14
V Fluid Reasoning 15
NV Knowledge 15
V Knowledge (routing) 15
NV Quantitative Reasoning 16
V Quantitative Reasoning 13
NV Visual-Spatial Processing 17*
V Visual-Spatial Processing 15
NV Working Memory 13
V Working Memory 13

However, the SB5 does little to show her weaknesses (like a 6 on coding at the most recent assessment, where they administered the WMI and PSI subtest portions only, given the SB5 had been done so recently). She's just really hard to make sense of, how much is being female and gifted compensating for her quirks? How much are her quirks pulling down her IQ? What exactly are her quirks? Because it looks like a little bit of everything, we have letter salad already without getting the ASD label, but all of them borderline... Just barely CAPD, just barely ADHD-i, clearly dyslexic according to the ASD team but not dyslexic at all according to everyone else we took her to... she might get OCD and anxiety in time, and so on.

It would be so nice if we could get the answers from a blood draw and gene test :-).