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ARI Autistic Global Initiative Committee’s Statement on the Newtown, CT Tragedy

16 Dec

The Autism Research Institute’s Autistic Global Initiative Committee has issued a statement on the Newtown Connecticut shootings:

ARI Autistic Global Initiative Committee’s Statement on the Newtown, CT Tragedy

The statement begins:

“Our thoughts and prayers are with the community of Newtown, Connecticut today in the wake of yesterday’s tragedy. Some public comments have drawn potentially inaccurate and stigmatizing conclusions about a link between the diagnosis and a propensity for violence and lack of empathy

The statement goes on, including ” As adults with autism living productive, peaceful lives, we urge the media and professionals who participate in speculative interviews about the motives of the accused shooter to refrain from misleading comments about autism and other neurodevelopmental disabilities”


By Matt Carey

Mr. Wright, is autism an epidemic or not? Why not give real examples of how to make a financial impact?

30 Nov

Bob Wright co-founded Autism Speaks and was their representative to the congressional hearing held yesterday. As part of that hearing, he called autism an “epidemic”, stating:

More than seven years have passed since my wife, Suzanne, and I founded Autism Speaks. During that time, we have seen the prevalence of autism in America nearly double – from 1 in 166 children in 2005 to 1 in 88 today, including 1 of every 54 boys. The prevalence of autism has increased by 1,000 percent over the last 40 years.

Mr. Wright’s testimony also included the statement: “The annual cost of autism in the United States is now estimated at $137 billion – a
figure that exceeds the gross domestic product of 139 countries.”

I tried to work out how Mr. Wright arrived at that figure and couldn’t easily get there. Why, you might ask? It’s nice to cross check: do figures someone assumes match the statements they are making. Luckily a recent interview makes it clearer how he came to these figures:

According to Wright, autism creates costs of $137 billion a year for the U.S., breaking down to $60,000 per year for family. Most of these costs are borne by the parents of the autistic child. Wright told Mitchell he’s “optimistic” after Thursday’s testimony but Congress needs “to have a plan” and “a will to execute it.”

Aside, more burden language. In my family, most of the difficulties with autism are lived by my kid, but I’ll move on. Partly because most of the “costs” in these estimates are incurred by adults.

A bit of quick math to see what autism prevalence Mr. Wright is assuming for autism in his calculation.

$137,000,000,000 cost total divided by 60,000 cost per family is 2,283,333 families. The US Population is currently estimated at 311,591,917. Combining these: 2,283,333 is 0.73% of 311,519,917. That would be an average of 0.73%, across all age groups. 1 in 136. Not so far from the 1 in 88 of the current autism prevalence estimate in the US for eight year olds.

But, wait, he didn’t say it that way. He didn’t say that it was $60,0000 per individual. He said “families”. Let’s take “households” as the estimate of how many families there are in the US: 114,235,996. 2,283,333 is 2% of 114,235,996. Average, across age groups. 2% of families/households have an autistic in them? It’s really the same figure as above (about 0.73%), but in another format. (in the original version of this article, I didn’t catch that fact).

So, Mr. Wright (or whoever in his staff produced these figures) is assuming an autism prevalence somewhere around 1 in 136 (0.73%). Which is pretty close to the current estimate of 1 in 88. Except that Mr. Wright’s figures appear to assume a flat prevalence over age. I.e. no epidemic. So, on the one hand we are told that autism rates are rising to make one scary point, on the other we are told autism costs a lot of money to make another scary point. But both statements are based on polar opposite assumptions. These were political and public relations statements, so it is almost expected that they won’t be self-consistent.

OK, let’s leave behind the “gotcha” phase of the article and re-analyze the statement more closely. He uses the figure of $3.2M as the lifetime cost of autism. That figure comes from this study: The lifetime distribution of the incremental societal costs of autism.

Taking just the results and conclusions of the abstract from that study:

RESULTS:
The lifetime per capita incremental societal cost of autism is $3.2 million. Lost productivity and adult care are the largest components of costs. The distribution of costs over the life span varies by cost category.

CONCLUSIONS:
Although autism is typically thought of as a disorder of childhood, its costs can be felt well into adulthood. The substantial costs resulting from adult care and lost productivity of both individuals with autism and their parents have important implications for those aging members of the baby boom generation approaching retirement, including large financial burdens affecting not only those families but also potentially society in general. These results may imply that physicians and other care professionals should consider recommending that parents of children with autism seek financial counseling to help plan for the transition into adulthood.

If one is going to discuss autism as a “societal cost” issue, one has to focus on where those costs are. The “low hanging fruit” of reducing societal costs are in “Lost productivity and adult care”. Productivity costs were calculated including:

Productivity losses for people with autism were estimated by combining standard average work-life expectancies for all men and women taken from the economics literature (ages 23-57 years for men and 23-53 years for women), 34 with average income and benefits (from Tables 696 and 628 of the Statistical Abstract of the United States36) and estimates of age- and sex-specific labor force participation rates

.

And a similar estimate assuming some amount of un and underemployment for the parents. But, even with the parental lost income assumed, the largest “costs” to society are for adults. Not really surprising as people spend much more of their lives as adults than as children. This begs many questions. I’ll start with: how much of this “cost” to society, right now, is being incurred because our adult autistics are un- and under-employed? Or to put it in a way to entice a member of Congress, how much money could the U.S. be saving, right now, if we did a better job supporting some fraction of the autism population into employment?

About 2/3 of the U.S. population is in the employable age range (18-65). That’s about 208 million Americans. Assume an autism prevalence of 1%. That’s 2.08 million Americans. Assume 1/10 of those are employable but unemployed. That would give about 208,000 Americans. Let’s take $30,000 per year as salary+benefits for these workers. That’s $6,240,000,000 ($6B) that could be realized if we could get this assumed fraction of autistics from unemployed to employed. Not including whatever is being paid out in unemployment or social security to this unemployed population.

One can quibble with the assumptions here, but we are talking big numbers here. The sort that should catch a legislator’s eye. For those who want to quibble with the idea that the autism prevalence is flat: hey, Bob Wright did it. More to the point, it’s probably correct to assume a relatively flat prevalence. And if you have real data to the contrary, you have data that is either unpublished (and I’d love to see it), incorrect or misinterpreted.

One reason to make this sort of calculation, i.e. focusing on autistics who can be employed, is that it is easy and direct. The math is simple. What about autistics who are not so close to employment, or not close at all? Autistics adults who are similar to my kid. How much do we save by investing in them? I would say a great deal. Each step helping a person move from a more restrictive adult support system to a more independent system will save money. Potentially lots of money. If that’s what congress needs to hear to be interested, fine. These are ways to make the financial impacts that should be attractive in Congress.

Rather than focus on the “costs”, I’d rather focus on what can make a person’s life better. Is the reward of a job merely the salary? I don’t think so. For those who experience even greater challenges, giving a person the ability to self-advocate to the point of not being an even bigger target is invaluable. It could stop problems like those discussed here recently.


By Matt Carey

Note, I made edits to this piece within the first 30 minutes of it being published.

Have a response to the congressional hearing? Let it be heard

30 Nov

Yesterday the U.S. House Commitee on Oversight and Government Reform held a hearing on autism. One can see it in the videos below. The Fist videos are from the government panelists Coleen Boyle Director of the National Center on Birth Defects and Developmental Disabilities
Centers for Disease Control and Prevention and Alan Guttmacher, Director, Eunice Kennedy Shriver National Institute of Child Health and Human Development, National Institutes of Health. The third video has the public panelists Bob Wright, Co-Founder Autism Speaks, Mr. Scott Badesch President Autism Society,
Mr. Mark Blaxill, Board Member SafeMinds, Bradley McGarry Coordinator of the Asperger Initiative at Mercyhurst Mercyhurst University, Mr. Michael John Carley Executive Director Global & Regional Asperger Syndrome Partnership, Mr. Ari Ne’eman (testimony) President Autistic Self Advocacy Network.

For the third video, here are the rough times for the start of the opening statements:

Bob Wright: 4:10
Scott Badesch: 10:00
Mark Blaxill: 16:00
Bradley McGarry:21:00
Michael John Carley: 26:00
Ari Ne’eman: 33:30

Discussions of the hearing can be found at Congressional Autism Hearing Recap (Thinking Person’s Guide to Autism) and Live blogging the autism hearing Autism hearing, round two (Autism News Beat).

If you have a response to the hearing you would like to make, they are accepting public comments for 7 days after the hearing (if I understood the Chairman correctly). One way you can is by sending a fax, using this form.

ASAN President Ari Ne’eman on C-SPAN’s Washington Journal Tomorrow (Saturday) at 9:15 AM

30 Nov

CSPAN will be hosting a program discussing autism with Autistic Self Advocacy Network (ASAN) president Ari Ne’eman tomorrow. Below is the email I received from ASAN:

ASAN President Ari Ne’eman on C-SPAN’s Washington Journal
Tomorrow at 9:15 AM

Yesterday was a historic day for the Autistic self-advocacy movement. For the first time, we had representation at a congressional hearing on autism. Although much of yesterday’s House Committee on Oversight and Government Affairs hearing focused on the same tired old questions on causation and cure, but thanks to your efforts, we had a seat at the table to offer another perspective for the first time.

Tomorrow, we’ll have a chance to continue having our voices heard. C-SPAN’s influential morning call-in program Washington Journal has invited ASAN President Ari Ne’eman to come on the show tomorrow morning from 9:15-10 AM to discuss federal disability policy, autism acceptance and the neurodiversity movement. And we want you to be a part of it.

To participate, you can call-in, email or tweet. C-SPAN has specifically urged Autistic people to participate, and has provided a dedicated call in line to help make sure we get on the air.

Call-In Numbers:
Democrats: (202) 585-3880
Republicans: (202) 585-3881
Independents: (202) 585-3882
Autistic People: (202) 585-3883
Email: journal@c-span.org
Twitter: http://twitter.com/cspanwj

Please follow us as we also livetweet from @autselfadvocacy with hashtag #AutismOnCSPAN.

I assume that times are Eastern Standard.

California Police Ignored, Mishandled Sex Assaults Reported by Disabled

30 Nov

This story from The Daily Beast: California Police Ignored, Mishandled Sex Assaults Reported by Disabled. Obviously potentially a trigger.

We’ve discussed sexual assaults in group homes in California in the past few years. Police made some of those cases priorities. The Daily Beast story discusses cases where there is a lack of even basic OK investigation:

Patients at California’s board-and-care centers for the developmentally disabled have accused caretakers of molestation and rape 36 times during the past four years, but police assigned to protect them did not complete even the simplest tasks associated with investigating the alleged crimes, records and interviews show.

Witnesses for Congressional hearing on autism announced

28 Nov

Thursday the US House Committee on Oversight & Government Reform will hold a hearing on autism: 1 in 88 Children: A Look Into the Federal Response to Rising Rates of Autism.

The witness list has been made public on the committee’s website:

Alan Guttmacher, M.D.
Director, Eunice Kennedy Shriver National Institute of Child Health and Human Development
National Institutes of Health

Coleen Boyle, Ph.D.
Director of the National Center on Birth Defects and Developmental Disabilities
Centers for Disease Control and Prevention

Mr. Bob Wright
Co-Founder
Autism Speaks

Mr. Scott Badesch
President
Autism Society

Mr. Mark Blaxill
Board Members
SafeMinds

Mr. Bradley McGarry
Coordinator of the Asperger Initiative at Mercyhurst
Mercyhurst University

Mr. Michael John Carley
Executive Director
Global & Regional Asperger Syndrome Partnership

Mr. Ari Ne’eman
President
Autistic Self Advocacy Network

Congressional hearing to include Autistic witnesses

27 Nov

This Thursday, Nov. 29, the U.S. House of Representatives Committee on Oversight and Government Reform will hold a hearing “1 in 88 Children: A Look Into the Federal Response to Rising Rates of Autism“. The original witness list (at least as far as I have heard, it is not on the Committee’s website) did not include autistic witnesses. It appears that has changed. Here is an announcement from the Autistic Self Advocacy Network (ASAN):

On November 29th, the House Committee on Oversight and Government Reform will be holding a hearing on autism. Invited witnesses include people from government agencies, parent autism advocacy organizations, AND Autistic self-advocacy organizations. We are pleased to report that the House Committee on Oversight and Government Reform staff have just reached out to us to invite Autistic representation to this Thursday’s hearing.

Thanks to all of you for making your voices heard and to the House Committee for hearing the message Nothing About Us, Without Us! Whether you faxed letters of support for Autistic representation at the upcoming hearing or signed our petition, your voice has been heard. Now Autistic voices will be heard as well. ASAN President Ari Ne’eman has been invited as one of not one but TWO Autistic witnesses scheduled to testify at the hearing.

The journey doesn’t end there. Come join us in showing support to Autistic people speaking! We’ll be gathering together at the Rayburn House Office, Room 2154 on the day of the hearing. The hearing itself will begin at 2 PM, but as we anticipate a packed room ASAN will begin gathering besides the door to the hearing at 11 AM. RSVP via our Facebook event page.

You made this happen!

Regards,

The Autistic Self Advocacy Network

It will be an uphill battle to get anything accomplished at this hearing, in my opinion. It’s a lame duck congress and a relatively short hearing. But the precedent has been set that autistics will be present. The precedent was set years ago that parents will be present.


By Matt Carey