Comments on: In Search of Accurate Autism Prevalence Information

By: Over-diagnosis? Misdiagnosis? Or Just Better Diagnosis?

Over-diagnosis? Misdiagnosis? Or Just Better Diagnosis? — Wed, 12 Nov 2008 02:26:45 +0000

[...] question that the prevalence of autism has increased significantly in the past couple of years. Rod Winter, the education [...]

By: The Art of Diagnosing Autism - Are the Numbers Accurate? « Living_With_Autism_in_Central_PA

Tue, 30 Sep 2008 14:39:07 +0000

[...] posting on this subject can be found HERE. Her piece was supporting the position that the current diagnosis rate of 1 in 150 is inaccurate. [...]

By: Dora

Dora — Fri, 22 Aug 2008 04:01:42 +0000

Mayfly–I mean people who are labeled autistic and agree that the label is accurate; or, as an alternative way to get at the idea, a representative from the population the legislative recommendation is intended to serve. In the context of what I wrote, I meant “at least one” as I was referring to including an individual or individuals on a committee, which typically has a limited number of positions available.

By: mayfly

mayfly — Fri, 22 Aug 2008 03:33:55 +0000

Dora, what is meant by “actual” autistic people? Did you just mean some or many?

By: Kristina Chew, PhD

Kristina Chew, PhD — Fri, 22 Aug 2008 01:37:35 +0000

@Dora, keep up your work—-it’s to the benefit of families with autistic children that your voice is included.

By: Karen

Karen — Fri, 22 Aug 2008 01:30:13 +0000

I’m not absolutely certain this is what you’re talking about up there in the discussion, but I do know that in CA, for example, my son got all his sp ed services based on “speech and language disorder” and was placed in the HFA class (where he clearly belongs and thrives). Once he was diagnosed with PDD:NOS, we could change his district status to “autistic-like behavior.” I don’t even know if they have a box to check for autism. Our program manager said it didn’t matter to them, they give services based on assessments and “symptoms.”

Makes me wonder if my son is included in the 1 in 150 statistic.

By: Regan

Regan — Thu, 21 Aug 2008 23:29:44 +0000

Hi Dora,
I heard your testimony on OPB–it was very eloquent, and I hope that the workgroup takes your first-person testimony under serious consideration–because we are all in this together. They seem serious in their intentions.

Kristina,
I honestly don’t know the legislative history of why the criteria is more permissive, except that under Federal regulation it is allowed, (just not more restrictive), consistent with US Code, Title 20, Chapter 33, Section 1414, which emphasizes educational eligibility, not diagnostic accuracy. It’s a state decision; my impression is that being more permissive was predicated on the positive intention of expanding EI/ECSE/Special Ed to students who might fall through the cracks or not receive sufficient intensity of service under a more restrictive criteria. The problem is that our state is hamstrung with various tax limitations that make something of a mockery of the original intention, since level of service that can realistically be offered is too often insufficient or inefficiently coordinated to meet demands currently on the system. That became very clear, both from the proposed legislative workgroup draft and the audience feedback at the meeting I attended. There are so many areas that need revamping and I don’t know how this state will put together the funds to do so, but we clearly need to find the will.

By: Kristina Chew, PhD

Kristina Chew, PhD — Thu, 21 Aug 2008 20:43:35 +0000

@regan, am so glad you clarified that. Why do you think the criteria are broader in OR?

By: Dora

Dora — Thu, 21 Aug 2008 19:17:35 +0000

I was at that meeting in N. Portland to voice concerns that actual autistic people were not included in the process, and no plans were being made to include them in the process. So it wasn’t just parents voicing concerns–I am not a parent, I am a self-advocate; also self-advocates from the OR state branch of SABE were present. While the abstract about the OPB story does not mention the presence of self-advocates, a clip from my testimony was included in the actual radio broadcast, and I was identified in the broadcast as a non-parent stake holder.

Hopefully there will be some dialogue in the future between me and the legislative committee (that maybe will even lead to some better reporting around statistics). I’m not expecting that the committee will start including actual autistic people in its process or seriously consult with me, but I will try to reach out to them anyway

By: Regan

Regan — Thu, 21 Aug 2008 17:47:42 +0000

As far as as your point about accurate counts, I would agree–and that Oregon might not be representative as far as determinations of prevalence based strictly on DSM-IV.