In Search of Accurate Autism Prevalence Information
August 21, 2008 by Kristina Chew, PhD
Filed under Health
The prevalence rate for autism among children in the US is 1 in 150, according to the most recently released figured from the Centers for Disease Control and Prevention in 2007. The 1 in 150 figure is based on data from the CDC’s Autism and Developmental Disabilities Monitoring Network (ADDM); the figure represents an average of ASD prevalence among states participating in the project. On its website about ASD prevalence, the CDC states:
In 2006, 224,594 children ages 6-21 and 35,111 children ages 3-5 were served under the “autism” classification for special education services[2]. Not all children with an ASD receive special education services under the classification of “autism,” so the education data underestimate the actual prevalence of ASDs [my emphasis]. For more information about children served through public education programs, go to the IDEA data website
Children can be classified with the code for autism by their school districts, but this is different from a child receiving a formal diagnosis of autism after a full assessment. Further, there are discrepancies among school districts due to their being (for example) rich or poor, and across ethnic and racial groups. So school data, as noted yesterday, need to be understood with certain caveats—-and, accordingly, this chart of autism prevalence based on “public school state rankings” needs to be cited with care. The chart does not provide actual figures about the prevalence of autism in the different states, but of children in public school who have been classified with the autism code for schools and services.
All the more unfortunate that the chart, which is on the website for Fighting Autism, is being treated as if it provides some official figures. An August 20th report from OPB (Oregon) news refers to the chart without referencing it in saying that Oregon’s prevalence rate is “1 in 89″: the chart lists Oregon’s rate as “1 in 88,” while the Autism Society of Oregon refers to the 1 in 150 figure. The OPB report notes a number of real and pressing concerns of parents of autistic children young and old as voiced at a North Portland town hall on Tuesday night; concerns that need to be heard, and presented along with accurate, and actual, information about autism.
Kristina,
I don’t want to sound like a jerk, but that 1/89 figure is from a current ODE report, not from the internet chart, although it’s probable that FA takes their numbers from our IDEA data. Some figures from particular counties state significantly higher prevalence.
That said, our criteria is more permissive than other states; autism can be purely educationally determined for purpose of receiving services, with no need for a medical diagnosis.
I went to one of those meetings and my only comment is that the proposed plan currently taking public comment all sounds good, but time, and the next legislative session will tell whether some of these needs will be addressed.
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.
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
@regan, am so glad you clarified that. Why do you think the criteria are broader in OR?
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.
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.
@Dora, keep up your work—-it’s to the benefit of families with autistic children that your voice is included.
Dora, what is meant by “actual” autistic people? Did you just mean some or many?
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.