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Autism Speaks: Statement on Newtown, Connecticut

15 Dec

Autism Speaks has issued the following statement on the Coonecticut school shooting yesterday:

Statement on Newtown, Connecticut

Statement on Newtown, Connecticut

Our hearts go out to the families and town of Newtown, Connecticut in the wake of this heartbreaking event. Several media outlets are reporting that the shooter might have had an autism spectrum disorder. Some have also inaccurately reported that there is a linkage between autism and planned violence. We ask that blame not be placed on people with disabilities or disorders in the midst of these types of tragedies and that everyone keep the families of Newtown in their prayers.

Elizabeth Feld
President, Autism Speaks

Edit to add: I posted this statement in full without asking permission of Autism Speaks. It is short enough to make it difficult to pull sections out for a discussion. I greatly appreciate Autism Speaks making this statement. I am not associated with Autism Speaks (or any autism organization).

Autism Society: No Linkage Between Autism and Planned Violence

15 Dec

The Autism Society of America issued a statement yesterday on the Connecticut school shootings: Autism Society: No Linkage Between Autism and Planned Violence

Autism Society: No Linkage Between Autism and Planned Violence

December 15, 2012
By Autism Society

Yesterday, 26 people lost their lives through the acts of a single person. These 26 people were children, teachers, husbands, wives, mothers, fathers, brothers, and sisters.  Today, their families are experiencing grief that can’t be described.  Our thoughts and prayers are with all those impacted by yesterday’s tragic shooting.

 The statement notes that many news outlets are reporting the speculation that the shooter was autistic and that “There is absolutely no evidence or any reliable research that suggests a linkage between autism and planned violence. ”

The statement goes on to state:

Please do not judge any individual with autism based on what is being said about a killer of innocent children and teachers.  Rather, our nation’s attention must be focused on being there for the children and teachers whose lives were lost yesterday

The full statement can be found at: Autism Society: No Linkage Between Autism and Planned Violence

(Note: I originally posted the statement in full. I did not request permission to do so, so I have edited this article)
—
By Matt Carey

ASAN Statement on Media Reports Regarding Newtown, CT Shooting

15 Dec

The Autistic Self Advocacy Network (ASAN) has issued a statement on the school shooting in Connecticut yesterday:

ASAN

Statement on Media Reports Regarding Newtown, CT Shooting

December 14, 2012
In response to recent media reports that the perpetrator of today’s shooting in Newtown, Connecticut may have been diagnosed on the autism spectrum or with a psychiatric disability, the Autistic Self Advocacy Network (ASAN) issued the following statement today:

“Our hearts go out to the victims of today’s shooting massacre at Sandy Hook Elementary School in Newtown, Connecticut and their families. Recent media reports have suggested that the perpetrator of this violence, Adam Lanza, may have been diagnosed with Asperger’s Syndrome, a diagnosis on the autism spectrum, or with another psychiatric disability. In either event, it is imperative that as we mourn the victims of this horrific tragedy that commentators and the media avoid drawing inappropriate and unfounded links between autism or other disabilities and violence. Autistic Americans and individuals with other disabilities are no more likely to commit violent crime than non-disabled people. In fact, people with disabilities of all kinds, including autism, are vastly more likely to be the victims of violent crime than the perpetrators. Should the shooter in today’s shooting prove to in fact be diagnosed on the autism spectrum or with another disability, the millions of Americans with disabilities should be no more implicated in his actions than the non-disabled population is responsible for those of non-disabled shooters.

Today’s violence was the act of an individual. We urge media, government and community leaders to speak out against any effort to spuriously link the Autistic or broader disability community with violent crime. Autistic Americans and other groups of people with disabilities persist in facing discrimination and segregation in school, the workplace and the general community. In this terrible time, our society should not further stigmatize our community. As our great nation has so many times in the past, let us come together to both mourn those killed by acts of heinous murder and defend all parts of our country from the scourge of stigma and prejudice.”

Media inquiries regarding this shooting may be directed to ASAN at info@autisticadvocacy.org.

—
By Matt Carey

FDA issues warning letter: The Judge Rotenberg Educational Center 12/6/12

14 Dec

The Judge Rotenberg Center in Massachusetts is the focus of much criticism for their use of electric shocks as aversives for behavior modification.  FDA approval is required for the shock devices (GED). Apparently JRC has changed the design but not sought FDA approval.

Here is the letter:

VIA UPS Next Day Air
December 6, 2012
Glenda Crookes
Executive Director
The Judge Rotenberg Educational Center
240 Turnpike Street
Canton, Massachusetts 02021-2359

Dear Ms. Crookes:

On October 3, 2012, through October 17, 2012, an investigator from the United States Food and Drug Administration (FDA) inspected your facility located at 250 Turnpike Street, Canton, Massachusetts.  As a result of this inspection, we observed the Graduated Electronic Decelerators (GED) 3A and GED4 devices at your facility.  Our inspection revealed that your firm has an inventory of (b)(4) GED3A devices and (b)(4) GED4 devices, for a total of (b)(4) GED devices.  Furthermore, our inspection revealed that use of the GED devices has been authorized for (b)(4) students through the Massachusetts Probate Court.
In a letter dated May 23, 2011, FDA notified your facility that the changes and modifications to the originally-cleared GED device require a new premarket notification under 21 CFR 807.81(a)(3).  As a result, the GED3A and GED4 devices violate the Federal Food, Drug, and Cosmetic Act (Act) because your facility has failed to obtain FDA clearance or approval.  Specifically, the devices are adulterated under section 501(f)(1)(B) of the Act, 21 U.S.C. § 351(f)(1)(B), because your facility does not have an approved application for premarket approval in effect, pursuant to section 515(a) of the Act, 21 U.S.C. § 360e(a), or an approved application for an investigational device exemption under section 520(g) of the Act, 21 U.S.C. § 360j(g).
In a letter dated June 29, 2012, FDA again notified your facility that the GED3A and GED4 devices are adulterated and require the submission of a premarket notification.  In responses to the letters dated May 23, 2011, and June 29, 2012, your facility stated that it is planning to make a submission under section 510(k) of the Act, 21 U.S.C. § 360(k), for changes and modifications to the GED3A and GED4 devices by December 2012.  We still have not received any submission from your facility.
Your facility should take prompt action to correct the violations addressed in this letter.  Failure to promptly correct these violations may result in regulatory action being initiated by the FDA without further notice.  These actions include, but are not limited to, seizure, injunction, and civil money penalties.  Also, federal agencies may be advised of the issuance of Warning Letters about devices so that they may take this information into account when considering the award of contracts. 
Please notify this office in writing within fifteen business days from the date you receive this letter of the specific steps your firm has taken to correct the noted violations, as well as an explanation of how your firm plans to prevent these violations, or similar violations, from occurring again.  Include documentation of the corrections and/or corrective actions (including any systemic corrective actions) that your firm has taken.  If your firm’s planned corrections and/or corrective actions will occur over time, please include a timetable for implementation of those activities.  If corrections and/or corrective actions cannot be completed within fifteen business days, state the reason for the delay and the time within which these activities will be completed.  Your firm’s response should be comprehensive and address all violations included in this Warning Letter.
Your facility’s response to this letter should be sent to:  Karen Archdeacon, Compliance Officer, Food and Drug Administration, One Montvale Avenue, 4th Floor, Stoneham, Massachusetts 02180.  If you have any questions about the content of this letter, please contact Ms. Archdeacon at (781) 587-7491.
In addition, we have scheduled a meeting at the FDA campus in Silver Spring, Maryland, Building 66 on Wednesday, January 9, 2013, to discuss the contents of this letter and to discuss your proposed 510(k) submission.  The purpose of this meeting will be to discuss an appropriate transition period, as of the date of the meeting, to discontinue use of the violative GED3A and GED4 devices.  Use of violative devices after this transition period may subject those devices and responsible persons at your facility to enforcement action, including product seizure, without further notice.  Please contact Ms. Archdeacon, at the above number to confirm this date or to reschedule a mutually convenient time.

Finally, you should know that this letter is not intended to be an all-inclusive list of the violations at your facility.  It is your facility’s responsibility to ensure compliance with applicable laws and regulations administered by FDA.
Your facility should investigate and determine the causes of the violations noted in this letter, in the Inspectional Observations, Form FDA 483 (FDA 483), issued at the close of the inspection, and in the letters dated May 23, 2011, and June 29, 2012.
Sincerely yours,
/S/
Mutahar S. Shamsi
District Director
New England District

I have to admit, this move reminds me of the US Government bringing All Capone to court for tax evasion.

—
By Matt Carey

Comparison of Healthcare Experiences in Autistic and Non-Autistic Adults: A Cross-Sectional Online Survey Facilitated by an Academic-Community Partnership

13 Dec

A recent paper addresses an issue I personally have considered very important and understudied: health care delivery for autistics. The current paper is: Comparison of Healthcare Experiences in Autistic and Non-Autistic Adults: A Cross-Sectional Online Survey Facilitated by an Academic-Community Partnership (pubmed link, full paper at AASPIRE).

From the AASPIRE press release:

AASPIRE Co-Director and principle investigator of the study, Dr. Christina Nicolaidis, said, “As a primary care provider, I know that our healthcare system is not always set up to offer high quality care to adults on the autism spectrum. However, I was saddened to see how large the disparities were. We really need to find better ways to serve them.”

While it is not surprising, it is sad that the healthcare system is not adequately serving autistic adults. Most of the survey respondents (68%) identified as having Asperger syndrome. Also, half (50%) identified as having disability in the areas of learning/remembering.

One side point, but an important one of this study: the involvement of AASPIRE and of autistic adults in the study. AASPIRE stands for the “Academic Autistic Spectrum Partnership In Research and Education (AASPIRE)”.

Autistic adult and AASPIRE Co-Director Dora Raymaker is also quoted in the press release:

AASPIRE’s community Co-Director, Dora Raymaker, noted “While I am discouraged by the findings, I am also encouraged by the direct involvement of the Autistic community in all parts of this project. In order to ensure research that is truly useful to autistic adults, it is critical to involve us directly in the process.”

I’ve already discussed the participation of AASPIRE, but it is worth noting the author list and affiliations:

Christina Nicolaidis, MD, MPH1, Dora Raymaker, MS1,2, Katherine McDonald, PhD3, Sebastian Dern4, W. Cody Boisclair, PhD4, Elesia Ashkenazy2, and Amanda Baggs4

1Departments of Medicine and Public Health & Preventive Medicine, Oregon Health & Science University, Portland, OR, USA; 2Autistic Self Advocacy Network, Washington, DC, USA; 3Department of Public Health, Food Studies & Nutrition and the Burton Blatt Institute, Syracuse University, Syracuse, NY, USA; 4AASPIRE Community Partner at Large, Portland, USA.

The names that jumped out at me right away were Dora Raymaker and Amanda Baggs. Autistic adults and some of the best people I know discussing rights and ethics of autism.

Here is a press release from Syracuse:

Katherine McDonald, Falk College of Sport and Human Dynamics associate professor and BBI faculty fellow, and other researchers with the Academic Autistic Spectrum Partnership in Research and Education (AASPIRE) have found that autistic adults report significantly worse health care experiences than their non-autistic peers.

The article, Comparison of Healthcare Experiences in Autistic and Non-Autistic Adults: A Cross-Sectional Online Survey Facilitated by an Academic-Community Partnership, is published in the Journal of General Internal Medicine.

AASPIRE is an academic-community partnership where academic researchers, autistic adults, and other community members work together throughout the project. AASPIRE is based at Oregon Health and Science University and partners with community organizations including the Autistic Self-Advocacy Network and the Autism Society of Oregon, as well as academic institutions including Syracuse University, Portland State University, and University of Indiana.

Read AASPIRE’s news release about the study

The AASPIRE press release is also available on the Thinking Person’s Guide to Autism.

Here is the abstract:

BACKGROUND: Little is known about the healthcare experiences of adults on the autism spectrum. Moreover, autistic adults have rarely been included as partners in autism research.

OBJECTIVE: To compare the healthcare experiences of autistic and non-autistic adults via an online survey. METHODS: We used a community-based participatory research (CBPR) approach to adapt survey instruments to be accessible to autistic adults and to conduct an online cross-sectional survey. We assessed preliminary psychometric data on the adapted scales. We used multivariate analyses to compare healthcare experiences of autistic and non-autistic participants.

RESULTS: Four hundred and thirty-seven participants completed the survey (209 autistic, 228 non-autistic). All adapted scales had good to excellent internal consistency reliability (alpha 0.82–0.92) and strong construct validity. In multivariate analyses, after adjustment for demographic characteristics, health insurance, and overall health status, autistic adults reported lower satisfaction with patient-provider communication (beta coefficient −1.9, CI −2.9 to −0.9), general healthcare self-efficacy (beta coefficient −11.9, CI −14.0 to −8.6), and chronic condition self-efficacy (beta coefficient −4.5, CI −7.5 to −1.6); higher odds of unmet healthcare needs related to physical health (OR 1.9 CI 1.1–3.4), mental health (OR 2.2, CI 1.3–3.7), and prescription medications (OR 2.8, CI 2.2–7.5); lower self-reported rates of tetanus vaccination (OR 0.5, CI 0.3–0.9) and Papanicolaou smears (OR 0.5, CI 0.2–0.9); and greater odds of using the emergency department (OR 2.1, CI 1.8–3.8).

CONCLUSION: A CBPR approach may facilitate the inclusion of people with disabilities in research by increasing researchers’ ability to create accessible data collection instruments. Autistic adults who use the Internet report experiencing significant healthcare disparities. Efforts are needed to improve the healthcare of autistic individuals, including individuals who may be potentially perceived as having fewer disability-related needs.

I would love to see more work on this, and solutions to these issues. I would love to see more work on how the medical system as it stands disincentivises doctors from taking on developmentally disabled patients. I would love to see work on how best to serve the medical needs of individuals with communication and sensory issues which make it much more difficult to perform a standard office visit. I would love to see solutions to problems that almost certainly exist.

—
By Matt Carey

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.

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By Matt Carey

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

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