Some USD Conference Notes
June 25, 2008 by Do'C 
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Last night I got to have dinner with some of my favorite Autsim Hub bloggers - an evening I’ll not soon forget.
Today was every bit as rewarding.
I had an excellent opportunity to hear the thoughts of several young people and adults with autism spectrum diagnoses, and I was fortunate to have an opportunity to speak with several attendees at the University of San Diego’s Autism Institute Summer Conference (School of Leadership and Education Sciences) this morning and this afternoon.
The good folks at USD even handed me the microphone for about 15 minutes (Steve D must have paid them dearly). With no intention of wasting that 15 minutes, I wanted to gather some feedback from the public (an awesome audience of professionals, teachers, and parents), so I asked two questions.
By a show of hands, how many people here have ever heard autism referred to as an “epidemic,” in the media, on the internet, etc.
Either just about everyone was raising a hand, or half of the audience was raising both of their hands.
By a show of hands, how many people here believe there is an autism “epidemic”?
No one raised a hand that I could see.
I then ran through a brief presentation looking at the scientific evidence (or should I say lack thereof) in support of an autism “epidemic” pretty quickly. At the end of the presentation, I displayed the important question authored by Morton Ann Gernsbacher, Michelle Dawson, and H. Hill Goldsmith in Three Reasons Not to Believe in an Autism Epidemic:
What message do we send autistic children and adults when we call their increasing number an epidemic? A pandemic? A scourge?
In an effort to emphasize understanding of the negative connotations of the word “epidemic,” I suggested a brief group exercise. I asked audience members to shout out things that come to mind when they hear the word “epidemic”. This group of thoughtful people produced the following list in a couple of minutes flat, as if it didn’t even really require thinking about. I apologize if I missed anyone’s contributions as 1. my alloted time had elapsed and we hurried through this, and 2. Steve D scrambled to keep notes for me (Thank you Steve) - it’s possible that we did not catch all of them. At any rate, here’s the audience’s list of things that immediately come to mind when hearing the word “epidemic”:
Disease
Filth
Death
Uncomfortable
Fear
Suffering
Plague
Unavoidable
Danger
HIV
Threatening
Isolation
Desperation
Cure It
Destruction
Annhilation
Panic
Quarrantine
Hopelessness
Hysteria
Pestilence
Armageddon
In addition to putting this list up, I’d like to post a couple of links for any attendees who want to do some further reading. These are just a few of the Researchers, studies, and sources of information I mentioned that you may find helpful.
Three Reasons Not Believe In An Autism Epidemic
Trends in Autism Prevalence: Diagnostic Substitution Revisited
IDEA Source Data
https://www.ideadata.org/PartBReport.asp
http://www.ed.gov/about/reports/annual/osep/index.html
CDDS Source Data
http://www.dds.ca.gov/FactsStats/Home.cfm
Ineteresting special education history in Massachusettes
(added 6/26/2006)
http://www.cityofboston.gov/archivesandrecords/allen.html
On June 10, 1976, plaintiffs filed suit in Suffolk Superior Court alleging a system-wide failure to evaluate and prepare educational plans for students referred for special education, and to conduct periodic reviews to monitor progress in accordance with state regulations. Allen v. McDonough was the first class action suit brought against a school system in Massachusetts for non-compliance with Chapter 766. The State Department of Education intervened on the side of the plaintiffs. The Allen v. McDonough Working Files represent the work of two defense attorneys who represented Boston Public Schools in this case: Michael Betcher (1976-84) and Marien E. Evans (1985-1992). From approximately 1992 until 1998 the law firm of Goulston and Storrs handled representation. The files span the years 1974 through 1998 but the bulk consists of the years 1976 – 1992.
A qualitative investigation of changes in the belief systems of families of children with autism or Down syndrome
(added 6/27/2006)
Beyond that, I’d like to offer a sincere thank you to a few people:
To the USD Autism Institute leadership and staff for inviting our group to participate.
To the audience who gave us their time and attention.
And to the Hub bloggers I’m proud to stand beside and say, “I want respect for all autistic people, including my son”.
On a final note, I met a couple of very thoughtful special education and general education teachers who expressed an interest in the video:
To those would like a higher-quality copy than what is available on Google Videos, simply contact me via the “Contact” link in the upper left, and I’ll hook you up.
G’nite all.
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Comment by Club 166 — 26 June, 2008 @ 6:12 am
I’m impressed, D’oC!
You made great use of the time allotted. Way to go.
Joe
Comment by hqt — 26 June, 2008 @ 6:25 am
I attended the conference at USD and after 3 days I am overwhelmed with all kinds of thoughts, ideas & emotions. The spirit of optimism was amazing because in the short time I’ve been teaching students with autism it seems like the “professionals” who were supposed to partner with me have a very limited view of how to interact with these kids. I loved hearing your perspective about the “epidemic” and now I feel empowered to express an opposing viewpoint to those negative people with closed minds I generally encounter. For a group of people who claimed to not be “professional speakers” everyone representing Autism Hub were well prepared, passionate and interesting to listen to. Blessings to you and your family on this amazing journey!
Comment by Mel C. — 26 June, 2008 @ 10:35 am
I attended the conference and it was life-changing. I really enjoyed the presentations of the autism hub bloggers.
I would like, however, to offer a different perspective on the epidemic question. A lot of us do believe there has been an increase in autism (myself included), but did not raise our hands because (a) we may not agree with the “epidemic” label and/or (b) we did not want to be singled out when we didn’t come prepare to debate. As a proud mom of an autistic child, I thank you for your involvement in the conference.
Comment by Do'C — 26 June, 2008 @ 11:19 am
Hi Mel C.
Thanks for you nice comments.
You wrote:
A lot of people do believe there has been an increase in autism, and I acknowledge the possibility of a small increase in the prevalence as part of my presentation. The only thing is, there is no science to support such a notion - for now it is simply “belief”. As a skeptic, I’m not big on “belief” as a method of reaching conclusions. I prefer the uncertainty of science (which can help to avoid false conclusions).
I can certainly understand people not rasining hands for the reasons you mention.
Comment by mike stanton — 26 June, 2008 @ 1:10 pm
I wish I had been there. It seems like you made excellent use of your 15 minutes of fame.
Comment by Do'C — 26 June, 2008 @ 1:22 pm
Hiya Mike. I just finished reading your post about this too.
I wish you could have joined us too. Perhaps next time.?
Comment by Ms. Clark — 26 June, 2008 @ 3:07 pm
I really enjoyed DoC’s presentation. He interacted with the audience, and in fact got a microphone and went out into the audience and walked around a bit. I felt like I was watching a professional motivational speaker. He was very lively, but not just lively, also, well informed.
He showed how there has been no increase in the number of disabled students in the schools in the US over the last 20 years or so using federal “IDEA” data. He asked the audience to look at the flat line on the graph showing total percentage of disabled students in the US over decades and then said, “Where’s the autism epidemic?”
He then showed a graph showing the total number of “mentally retarded students” according to IDEA and the total number of ASD students over the same time. You can see that the number of MR students dropped in almost exact mirror fashion as the number of autistic students rose (starting in 1994 when they added autism as a category for IDEA.
It’s good to note that the number of “SLD” or Specific Learning Disability students also dropped in the same time period.
And the number of “Traumatic Brain Injury” students skyrocketed even more than autism. TBI and autism were both added in 1991-92 and they both experienced “an epidemic” according to the IDEA data. It’s an illusion caused by the way administrative data are collected.
http://www.autcom.org/pdf/Epidemic.pdf
Comment by Sigma — 27 June, 2008 @ 9:09 am
The word “epidemic” is used as a fear tactic to democratize ASD so people think it is a disease that any child - including theirs - can get. The purpose is to get money from both the government and charitable donors. This tactic worked very well for the gay community to get funding for both AIDS research and treatment. So far, it has achieved some level of success for some ASD groups.
Comment by Do'C — 27 June, 2008 @ 10:15 am
Sigma, I’ll agree that the word “epidemic” is often used as a fear tactic. Plain and simple, in the absence of supporting science, it’s an emotional appeal (fear and pity).
On that note, the AIDS analogy is quite mismatched.
1. Epidemiology substantiates AIDS epidemics,
http://www.cdc.gov/mmwr/preview/mmwrhtml/mm5521a2.htm
http://www.cdc.gov/mmwr/preview/mmwrhtml/june_5.htm
http://en.wikipedia.org/wiki/AIDS#Epidemiology
2. AIDS is a high-mortality infectious disease, autism spectrum disorders are not known to be.
3. To the extent the gay community called for research and treatment, they did so for an actual infectious disease epidemic, not being gay. Their use of the word “epidemic” is a more accurate description of the situation.
In my opinion, the “some ASD groups” you mention are not doing the same thing at all, especially since the notion of an autism “epidemic” lacks scientific support.
Comment by Do'C — 27 June, 2008 @ 10:41 am
On a side note (possibly related): I’ve seen many who believe in an autism “epidemic” throw out the canard, “Why are there so many sick kids?”.
For an enlightening look at this, please don’t miss EpiWonk’s most recent post.
Also, look at the percentage of population served under IDEA for all disabilities over several recent years.
Graph here. Source data available to the public here.
Comment by Sigma — 29 June, 2008 @ 7:51 am
I never said or meant that some people don’t believe that there is an “epidemic” or substantial rise in the number of kids on the spectrum. I meant that the hyperboli was being used to garner funding. It is quite obvious that the change in diagnosis is feeding much of the increase. Unfortunately, the paradigm regarding long term outlook has not changed along with the broader definition so that “fear” is magnified for most parents.
In the case of AIDS, there was never a real “epidemic” among hetrosexuals because transmission of disease was extremely difficult under “typical” hetrosexual activities. Contaminated needles, tainted transfusions and anal sex being the primary means of transmission to be quite graphic. That is not how it was portrayed to the American public. In fact, the public still has never been told the truth.
As you know, I do believe that there has been a real rise in ASD. I think it is significant (not epidemic), but I admit that it cannot be quantified because of the changing definition and subjectivity of the diagnosis. I also disagree with lumping all of these kids under one umbrella when we know there are hundreds of genes at play and it seems obvious that the environment is involved in a substantial percentage of these genes.
I also still hold the belief that Asperger’s is largely a personality difference that should not be viewed in any way as a disability, any more than any other weakness or deficit that all of us have. I believe it is a shade of normalcy. We have just lost sight of what is normal in our effort to label everything. As you know, 20-30-40 years ago, we did not label many of these kids.
Comment by Sharon — 29 June, 2008 @ 10:07 am
It is so great to read about all this. I wish I could have been there.
Thanks for all your hard work, for the effect this will have on making the world understand more of the truth about autism and for making us all proud and hopeful.
Comment by Thomas — 29 July, 2008 @ 1:14 pm
Do’C,
It seems that you and many others disagree with using the term “epidemic” because of the stigma it carries (proven by your audience’s list of word associations). However, Merriam-Webster defines epidemic as:
1: affecting or tending to affect a disproportionately large number of individuals within a population, community, or region at the same time
Given the rise in the number of ASD cases in recent years (a disproportionately large number compared to 20 years ago, even when you take into account the revised DSM IV criteria), doesn’t it seem like the word, in its literal meaning, fits the bill?
As a parent of a child with autism, I understand wanting ASD children to receive the same care and respect as unaffected kids, and I don’t want them to carry a stigma, they have enough to deal with. But I agree with Sigma that the more seriously the government takes ASD, the more attention, and more importantly funding, it will receive.
I love my son exactly the way he is, but would love to see more money spent on ASD research.
Thomas
Comment by Do'C — 29 July, 2008 @ 7:08 pm
Thomas, I do think using the term “epidemic” carries unwarranted potential stigma, however your proof by the audience’s list of word associations is quite incomplete. I think using the term “epidemic” is scientifically inappropriate, because such a term is not supported by the data. When framing a discussion about something scientific, I prefer a more scientific source than a Merriam-Webster dictionary. In fact, for the actual presentation, I cited a simple, yet epidemiological definition.
“The definition of the word “epidemic” is the occurrence of a given disorder that is substantially higher than expected.[40]”
Paul T. Shattuck, PhD
The Contribution of Diagnostic Substitution to the Growing Administrative Prevalence of Autism in US Special Education
PEDIATRICS Vol. 117 No. 4 April 2006, pp. 1028-1037 (doi:10.1542/peds.2005-1516)
[40] Gordis L. Epidemiology. 2nd ed. Philadelphia, PA: WB Saunders; 2000
You will find this in the third “additional reading” link provided in my article - go ahead, read up.
Expectations for “autism numbers” are derived from the current descriptive epidemiology. Special education data does not exceed the expectation, not by a longshot.
Please present some actual data showing a rise in the number of ASD cases in recent years, so that I can consider your question.
And if there is no epidemic? What happens then? How seriously does the government take ASD research and funding?
Comment by Thomas — 30 July, 2008 @ 1:02 pm
I guess my question is, why would you want to in any way downplay the seriousness of autism and its numbers?
Comment by Do'C — 30 July, 2008 @ 7:16 pm
Congratulations Thomas, a classic straw man argument.
Please feel free to explain the “seriousness” or the “numbers” that are being “downplayed”.
Comment by Prometheus — 5 August, 2008 @ 1:22 pm
Gee, Thomas, don’t you want to know the actual prevalence of autism and whether it is rising, falling or staying the same?
Isn’t it better to know the facts?
Is it better to have a wrong answer that conforms to your view of how the world should be, or is it better to have the correct answer, even if you have to modify your model of the world?
How is trying to show that there is no data supporting the “autism epidemic” the same as “downplaying the seriousness of autism”?
Don’t you understand that even if there is no “autism epidemic”, the needs of autistic people are still just as serious?
However, if there isn’t an “autism epidemic” (and the data are pointing that direction), then the choices that we need to make as a society will be different from those we would make if there was an “autism epidemic”.
If you don’t understand what Do’C is trying to show here, then ask a question.
If you don’t understand the advantage of having accurate data when making personal choices or public policy, then there is so much you have to learn.
Prometheus