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UJA Adult with ASD Survey: the time is now to let yourself be heard

11 Dec

IAN, the Interactive Autism Network, the UJA Federation of New York and the Autism Science Foundation are working together to gather data on ASD Adults using an online survey.

Below is the text of the introduction page. I don’t see anything limiting this to U.S. participants. If you want to see action on issues of importance to ASD adults, this will be a good step.

Welcome to IAN registration and the UJA Adult with ASD Survey.

We will be asking you to complete the following:

1) IAN Registration: Complete demographic and autism spectrum diagnosis questions to register with the Interactive Autism Network (IAN) – the world’s largest online autism research project. By registering with IAN you will have the opportunity to participate in adult-focused surveys (like the UJA Adult with ASD Survey) and will also learn about other studies hoping to invite adults with ASD to participate. We still know very little about the situation or needs of adults with ASD, and IAN hopes to change this by making adult-focused ASD research easier for participants and researchers alike.

We know privacy is important to you. The IAN privacy policy begins on page 5 of the consent document which appears here and will also be available when you view the consent question in a few minutes.

You will need Adobe Reader to open and/or print the research consent document. If you don’t have Adobe Reader, you can get it here: http://get.adobe.com/reader/

2) Consent: After answering the demographic and diagnosis questions, you will be asked to consent to participate in the IAN Research project. Click “yes” or “no” to provide your consent (or not) as you choose. (If you click “no” we will not keep the information you shared in the earlier demographic/diagnosis section.)

3) UJA Adult with ASD Survey: After you consent to participate in IAN, the UJA Adult with ASD Survey will begin. Simply answer the questions to the best of your ability. We thank you for your time and your input.


By Matt Carey

Interagency Autism Coordinating Committee’s (IACC) Conference Call

11 Dec

The U.S. Interagency Autism Coordinating Committee (IACC) will be holding their final meeting of 2012 next week via conference call. Details, including how to submit comments, are below.

Interagency Autism Coordinating Committee’s (IACC) Conference Call
 
Please join us for a conference call of the IACC Full Committee on Tuesday, December 18, 2012 from 10:00a.m. to 4:00p.m. ET. The committee will review and approve the final 2012 update of the IACC Strategic Plan for Autism Spectrum Disorder Research.
 
The committee will be meeting via conference call, but oral public comments may be made in person at the location specified below and will be webcast live so that the committee members and members of the public can view the session. The other portions of the meeting will be conducted via conference call only.
 
Individuals and representatives of organizations interested in providing public comments must submit a written/electronic copy of the oral statement/comments including a brief description of the organization represented by 12:00 PM ET on Friday, December 14, 2012. Statements submitted will become a part of the public record. Only one representative of an organization will be allowed to present oral comments, and presentations will be limited to three to five minutes per speaker, depending on the number of speakers to be accommodated within the allotted time. Speakers will be assigned a time to speak in the order of the date and time when their request to speak is received, along with the required submission of the written/electronic statement by the specified deadline.
 
In addition, any interested person may submit written comments to the IACC prior to the meeting by sending the comments to the Contact Person listed on this notice by 12:00 PM ET, Friday, December 14, 2012. The comments should include the name and, when applicable, the business or professional affiliation of the interested person. All written comments received by the deadlines for both oral and written public comments will be provided to the IACC for their consideration and will become part of the public record.
 
The conference call and in-person oral public comment session will be open to the public. The phone number and access code for the call is provided below.  Members of the public who participate using the conference call phone number will be able to listen to the meeting, but will not be heard. 
 
Conference Call Access
USA/Canada Phone Number: 800-369-1881
Access code: 9976437
 
Individuals who participate using this service and who need special assistance, such as captioning of the conference call or other reasonable accommodations, should submit a request to the contact person listed above prior to the meeting.  If you experience any technical problems with the conference call, please e-mail iacchelpdesk2012@gmail.com or call 301-339-3840 for assistance.
 
Please visit the IACC Events page for the latest information about the meeting, remote access information, the agenda and information about other upcoming IACC events.
 
Contact Person for this meeting is:
Ms. Lina Perez
Office of Autism Research Coordination
National Institute of Mental Health, NIH
6001 Executive Boulevard, NSC
Room 6182A
Rockville, MD 20852
Phone: 301-443-6040
IACCpublicinquiries@mail.nih.gov

Missing Family With “Suicide Pact” Due To Autism Costs

3 Dec

This story reminds me of another story from years back. But it is happening now. The story, Missing Family With “Suicide Pact” Due To Autism Costs, is out of Melbourne Florida:

MELBOURNE, Florida — A Florida MISSING CHILD Alert has been issued for Kiah Firth, who was last seen wearing an all pink sundress with flower print and Kristin Firth, who was last seen wearing a dark blue sundress with a belt and a bowtie in the back.

Why are they looking for these children?

Law enforcement says that the “suicide pact” was the result of James and Mai Firth’s frustration that “Kristen’s” Autism is expensive to treat. James and Mai Firth stated they would kill the children and themselves if “the money ran out” or “Kristen” didn’t show improvement during treatment

Mai, your daughters are beautiful and only two and four years old.  You have no idea of their potential to be happy. Please, if this suicide pact is anything real, hand your children off to someone who will see that they are cared for.

The story gives pictures and descriptions of the family members and a description of their car:

The family may be traveling to San Francisco, California to board an international flight to Vietnam. The family is riding in a silver 2002 Lexus SUV, Florida license plate 612PGW, which is registered to James Firth.

If you have any information regarding the whereabouts of this family, please call the Melbourne Police Department at 321-409-2200, or Crimeline: 1-800-423-TIPS (8477), or the National Center for Missing and Exploited Children: 1-800- THE-LOST (1-800-843-5678).

There’s a lot that could be said at this point. But keep in mind that this is a Google news listed site and consider encouraging the family to not follow through on the pact. I hope that by running they are indicating that they are just planning to return to Vietnam.


By Matt Carey

DSM 5 has been approved

1 Dec

Below is the announcement that the DSM 5 has been approved. No details on the approved criteria for autism. I found the link to the original posted to Facebook by the Autism Science Foundation.

A Message From APA President Dilip Jeste, M.D., on DSM-5

December 1, 2012

I am pleased to announce that DSM-5 has just been approved by APA’s Board of Trustees. Getting to the finish line has taken a decade of arduous work and tens of thousands of pro-bono hours from more than 1,500 experts in psychiatry, psychology, social work, psychiatric nursing, pediatrics, neurology, and other related fields from 39 countries. We look forward to the book’s publication next May.

The goal of the DSM-5 process has been to develop a scientifically based manual of psychiatric diagnosis that is useful for clinicians and our patients. APA’s interest in developing DSM dates back to the organization’s inception in 1844, when one of its original missions was to gather statistics on the prevalence of mental illness. In 1917, the Association officially adopted the first system for uniform statistical reporting called the Statistical Manual for the Use of Hospitals for Mental Diseases, which was adopted successfully by mental hospitals throughout the country. It was expanded into the first Diagnostic and Statistical Manual (DSM) in 1952 and first revised (DSM-II) in 1968. Like the rest of the field in that era, these first two versions were substantially influenced by psychoanalytic theories.

With advances in clinical and scientific knowledge, changes in diagnostic systems are inevitable. The World Health Organization’s International Classification of Diseases (ICD)—the standard diagnostic tool for epidemiology, health management, and clinical care used around the world, which covers all medical diagnoses—has been through 10 editions since the late 1800s and is now preparing its 11th edition, due in 2015. Likewise, DSM has undergone changes to take into account progress in our understanding of mental illnesses. DSM-III, published in 1980 under the leadership of Dr. Robert Spitzer, and DSM-IV, published in 1994 under the leadership of Dr. Allen Frances, represented the state of science of psychiatry at those times and significantly advanced the field.

In the two decades since the publication of DSM-IV, we have witnessed a wealth of new studies on epidemiology, neurobiology, psychopathology, and treatment of various mental illnesses. So, it was time for APA to consider making necessary modifications in the diagnostic categories and criteria based on new scientific evidence. But there were, of course, challenges inherent in revising an established diagnostic system The primary criterion for any diagnostic revisions should be strictly scientific evidence. However, there are sometimes differences of opinion among scientific experts. At present, most psychiatric disorders lack validated diagnostic biomarkers, and although considerable advances are being made in the arena of neurobiology, psychiatric diagnoses are still mostly based on clinician assessment.

Also, there are unintended consequences of psychiatric diagnosis. Some arise from the unfortunate social stigma and discrimination in getting jobs or even obtaining health insurance (notwithstanding the mental health parity law) associated with a psychiatric illness. There is also the double-edged sword of underdiagnosis and overdiagnosis. Narrowing diagnostic criteria may be blamed for excluding some patients from insurance coverage and needed services, while expanded efforts to diagnose (and treat) patients in the early stages of illness to prevent its chronicity are sometimes criticized for increasing its prevalence and potentially expanding the market for the pharmaceutical industry. (It should be noted, however, that DSM is not a treatment manual and that diagnosis does not equate to a need for pharmacotherapy.)

APA has carefully sought to balance the benefits of the latest scientific evidence with the risks of changing diagnostic categories and criteria. We realize that, given conflicting views among different stakeholders, there will be inevitable disagreements about some of the proposals— whether they involve retaining the traditional DSM-IV criteria or modifying them.

The process of developing DSM-5 began in earnest in 2006, when APA appointed Dr. David Kupfer as chair and Dr. Darrel Regier as vice chair of the task force to oversee the development of DSM-5. The task force included the chairs of 13 diagnostic work groups, who scrutinized the research and literature base, analyzed the findings of field trials, reviewed public comments, and wrote the content for specific disorder categories within DSM-5. To ensure transparency and reduce industry-related conflicts of interest, APA instituted a strict policy that all task force and work group members had to make open disclosures and restrict their income from industry. In fact, the vast majority of the task force and work group members had no financial relationship with industry.

To obtain independent reviews of the work groups’ diagnostic proposals, the APA Board of Trustees appointed several review committees. These included the Scientific Review Committee (co-chaired by Drs. Ken Kendler and Robert Freeman), Clinical and Public Health Committee (co-chaired by Drs. Jack McIntyre and Joel Yager), and APA Assembly Committee (chaired by Dr. Glenn Martin). Additionally, there was a forensic review by members of the Council on Psychiatry and Law. Drs. Paul Appelbaum and Michael First were consultants on forensic issues and criteria/public comments, respectively. Reviews by all these groups were coordinated in meetings of the Summit Group, which included the task force and review committee co-chairs and consultants along with members of the Executive Committee of the Board of Trustees

There has been much more public interest and media scrutiny of DSM-5 than any previous revisions. This reflects greater public awareness and media interest in mental illness, as well as widespread use of the Internet and social media. To facilitate this transparent process, APA created a Web site (www.dsm5.org) where preliminary draft revisions were available for the public to examine, critique, and comment on. More than 13,000 Web site comments and 12,000 additional comments from e-mails, letters, and other forms of communication were received. Members of the DSM-5 work groups reviewed the feedback submitted to the Web site and, where appropriate, made modifications in their proposed diagnostic criteria.

We believe that DSM-5 reflects our best scientific understanding of psychiatric disorders and will optimally serve clinical and public health needs. Our hope is that the DSM-5 will lead to more accurate diagnoses, better access to mental health services, and improved patient outcomes

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

Action Alert: Call today to support The Convention on the Rights of Persons with Disabilities!

27 Nov

The action alert below is from The Arc:

Action Alert: Call today to support The Convention on the Rights of Persons with Disabilities!
Take Action!

The United Nations Convention on the Rights of Persons with Disabilities (CRPD) is being brought to the U.S. Senate floor this week. We are nearing a vote, as Senate Majority Leader Harry Reid (D-NV) indicated he will bring the treaty up to begin debate during Executive Session within the next few days.  The Arc has been working with numerous other disability advocacy groups to garner support for ratifying the treaty, which will promote, protect, and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities.  This vote is the culmination of months of advocacy work by advocates like you and we need your help to ensure ratification.

It is important for you to contact your Senators today and let them know that you support CRPD. We need every U.S. Senator to be contacted and to know that the disability community is leading the charge for U.S. ratification of this international disability treaty. Our voice matters.

Get your friends, family, and work colleagues to make calls and use social media today to show support! Click on the “take action” link at the top of the page to get started.

You can find phone and email contact information for your Senators here, and Twitter IDs for your Senators here (Tweet using #CRPD #UNCRPD).

Tell your Senators:

I am a person with a disability (I am a family member/friend/supporter of a person with a disability) and I want to see the Senator vote in support of the CRPD this year!

The CRPD will not cost the Federal Government any additional funds.

The CRPD has been reviewed by both Republican and Democratic Attorneys General and by past Counsel to Presidents.  They confirm that it does not threaten the sovereignty of the U.S. nor does it require any new legislation to comply with the treaty. 

This treaty is good for American business and for the world.  It will allow us to bring our knowledge of making a society accessible to the whole world.

MOST IMPORTANTLY – This treaty is very important to the U.S. disability community! Following U.S. ratification of the treaty, U.S. leadership will help raise accessibility around the world, directly helping Americans with disabilities who live, work, or travel abroad.  

Sample Tweet : @(SenatorID) Vote to support the #CRPD #UNCRPD!  This is a #disability issue and we say vote YES!

Sample Twitpic: https://twitter.com/USICD/status/259376999901044736/photo/1


By Matt Carey