Archive by Author

Thinking Person’s Guide to Autism: An Interview with IACC Member Dr. Matt Carey

4 Apr

I am way behind on blogging. So far behind that I didn’t even mention here an interview I did with the Thinking Person’s Guide to Autism: An Interview with IACC Member Dr. Matt Carey. It was a pleasure to work with the TPGA people. If you don’t know them, take a look at their blog. Their book is the classic “book I wish someone gave me when my kid was first diagnosed”.

The IACC will be holding a meeting next Tuesday. Also, the IACC recently submitted a letter to U.S. Department of Health and Human Services Secretary Sebelius recommending public and private insurance coverage of early behavioral interventions for children with autism spectrum disorder.

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By Matt Carey

note: I serve as a public member to the IACC but all comments here and elsewhere are my own.

Letter from New York State Education Department to Judge Rotenberg Center: cease use of electric shock devices

4 Apr

The Judge Rotenberg Center (JRC) is known for its use of strong aversives in the educational programs of many of the students resident there. These aversives are delivered via electric shocks from “GED” devices many of the students wear. The GED devices have undergone some revisions over time and the current versions have not been approved for use on humans. Thus, the NY State Department of Education has notified JRC that they must cease using the unapproved devices. Apparently, JRC no longer manufactures nor has on hand the older, FDA approved devices. Thus, this letter in effect ends the use of electric shocks on New York students.

Below is a letter sent to JRC’s executive director, Glenda Crookes on March 12th, 2013 (the pdf is here, and I apologize for any mistakes in the OCR of that document).

Upon review of the “Warning Letter” CMS #367480 issued by the Department of Health and Human Services, Food and Drug Administration (FDA) on December 6, 2012 to the Judge Rotenberg Educational Center (JRC), and your responses thereto, the New York State Education Department (NYSED) finds JRC in violation of 8 NYCRR §200.22(f)(2)(viii) which states:

The use of any aversive conditioning device used to administer an electrical shock or other noxious stimuli to a student to modify undesirable behavioral characteristics shall be limited to devices tested for safety and efficacy and approved for such use by the United States Food and Drug Administration where such approval is required by Federal regulation.

In the above-referenced warning letter, the FDA states:

“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 US.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 US.C. § 360e(a), or an approved application for an investigational device exemption under section 520(g) of the Act, 21 US. 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 US.C. § 360(k), for changes and modifications to the GE03A and GED4 devices by December 2012. We still have not received any submission from your facility. “

Therefore, consistent with the March 5, 2013 order by the Honorable Gary L. Sharpe, Chief Judge of the U.S. District Court, Northern District of New York, NYSED requires JRC to cease use of the GED-3A and GED-4 devices with NYS stUdents with disabilities not later than 30 days of receipt of this letter. All parties affected by this corrective action have been notified. This notification, which provides 30 days’ notice to JRC, replaces the corrective action letter issued to you on January 15, 2013.

As noted on the FDA website “Premarket Approval (PMA) is the most stringent type of device marketing application required by FDA. A PMA is an application submitted to FDA to request approval to market. Unlike premarket notification, PMA approval is to be based on a determination by FDA that the PMA contains sufficient valid scientific evidence that provides reasonable assurance that the device is safe and effective for its intended use or uses.” (emphasis added) 8 NYCRR §200.22(f)(2)(viii) specifically requires that devices used for aversive interventions be “limited to devices tested for safety and efficacy and approved for such use by the FDA where such approval is required by federal regulation.” Without premarket approval, the devices have not been ‘tested’ and determined to be safe and effective for their intended use or uses. The use of the word “approval” for purposes of the above-referenced regulation was intended to encompass all requirements by FDA regarding such devices, including premarket approvals.

JRC was first notified by the FDA that the above-referenced devices did not have FDA clearance or approval as early as May 2011, yet you chose not to disclose this information to the New York State Education Department (NYSED), despite your direct knowledge since 2006 of New York State (NYS) regulations that specifically require FDA approval or clearance of devices used for aversive conditioning. It is JRC’s responsibility to ensure compliance with applicable NYS laws and regulations relating to the education of NYS’ students with disabilities.

In a letter dated January 18, 2013, Mr. Flammia raises the claim that “treatment with the GED devices is federally mandated by the students’ IEPs.” While the IEPs of the NYS students may indicate use of Level III aversives or a GED device, only one specifies the use of the GED 4 device. Further, while IDEA guarantees a free appropriate public education (FAPE), 34 CFR §300.18 specifically states that FAPE means special education and related services that meet the standards of the State Educational Agency. The standards of this State include the requirement for a prohibition on the use of aversive interventions, except as provided in 8 NYCRR §200.22(e) and that the use of any aversive conditioning device used to administer an electrical shock or other noxious stimuli to a student to modify undesirable behavioral characteristics shall be limited to devices tested for safety and efficacy and approved for use by the FDA. The FDA has publicly posted that the GED3A and 4 do not meet their standards for a determination that they are “safe and effective for its intended use or uses.”

Nothing in Mr. Flammia’s response to the New York State Education Department (NYSED) provides any documentation that the FDA now finds these devices safe for use, even during a transition period. Further, Mr. Flammia states “JRC is currently assessing 2 the time that it would take to revert back to use of the original version of the GED device” … and that the “time that it will take to revert back to the original version of the GED device is being reviewed and is unknown at this time.” Even if a transition period were appropriate, it would be irresponsible and inappropriate for NYSED to authorize JRC to continue to use devices not tested and determined to be safe with NYS students. As I stated in my letter of January 15, 2013 if you have a letter or other documentation indicating that the FDA finds it safe to continue the use of such devices during a transition period or that it has issued premarket approval of such devices, determining them to be “safe and effective for its intended use or uses,” then you should immediately fax that information to me.

In Mr. Flammia’s January 18, 2013 letter, he notifies NYSED that JRC no longer manufactures the FDA-approved GED devices or has such devices in your inventory. (This is information that was not previously disclosed by JRC to NYSED.) Therefore, you must take immediate steps to provide an approved device to implement the students’ IEPs or, until such time as the FDA notifies JRC that such devices have been determined safe for continued use, you must implement an interim alternative behavioral intervention plan with these students that does not include the use of GED 3A or GED 4. We are notifying each of the school districts that their Committees on Special Education must take immediate action to address this issue in the students’ IEPs.

In summary, effective 30 days from receipt of this letter, unless otherwise directed by the court, JRC must cease the use of the GED 3A and GED 4 devices with NYS students until such time as the FDA notifies you that the use of such devices have the required FDA approvals. If you have additional information from the FDA that it has determined that it is safe to use such devices during a transition period, and you would like to discuss this transition plan, please contact my office to arrange a meeting.

The letter was dated March 12, so the 30 day time limit is approaching fast.

I think the New York Department of Education could do much more to support these students through this transition than merely inform their school districts that their IEP’s need to be updated. This is a major change for students with quite extraordinary needs.

—
By Matt Carey

United Nations statements on Autism Awareness Day

4 Apr

The United Nations released two statments on April 2nd, Autism Awareness day. Those statements, from the U.N. Secretary General and the U.N. as a whole are below.

Secretary-General, in Message, Says Vital to Work Hand-in-Hand with Persons with Autism to Help Cultivate Their Strengths, Address Their Challenges

Following is UN Secretary-General Ban Ki-moon’s message for World Autism Awareness Day, 2 April:

World Autism Awareness Day has succeeded in calling greater international attention to autism and other developmental disorders that affect millions of people worldwide.

The current session of the United Nations General Assembly has adopted a new resolution on this issue, demonstrating a commitment to help affected individuals and families. The resolution encourages Member States and others to strengthen research and expand their delivery of health, education, employment and other essential services. The Executive Board of the World Health Assembly will also take up the subject of autism spectrum disorders at its forthcoming session in May.

This international attention is essential to address stigma, lack of awareness and inadequate support structures. Current research indicates that early interventions can help persons with autistic conditions to achieve significant gains in their abilities. Now is the time to work for a more inclusive society, highlight the talents of affected people and ensure opportunities for them to realize their potential.

The General Assembly will hold a high-level meeting on 23 September to address the conditions of more than 1 billion persons with disabilities, including those with autism spectrum disorders. I hope leaders will seize this opportunity to make a meaningful difference that will help these individuals and our human family as a whole.

Let us continue to work hand-in-hand with persons with autism spectrum disorders, helping them to cultivate their strengths while addressing the challenges they face so they can lead the productive lives that are their birthright.

Films, Panel Discussions, Live Performances among Events to Mark Observance of World Autism Awareness Day at Headquarters, 2 April

A growing number of countries are heralding a new call for involvement in addressing autism and other developmental disorders that affect millions of individuals and their families and societies worldwide as the United Nations and communities around the globe mark World Autism Awareness Day on 2 April with commemorative events including film screenings, panel discussions and live performances.

“This international attention is essential to address stigma, lack of awareness and inadequate support structures,” said United Nations Secretary-General Ban Ki-moon in a message to mark the Day. “Current research indicates that early interventions can help persons with autistic conditions to achieve significant gains in their abilities. Now is the time to work for a more inclusive society, highlight the talents of affected people and ensure opportunities for them to realize their potential.” (See Press Release SG/SM/14890-OBV/1195 of 20 March.)

In December 2007, the United Nations General Assembly unanimously adopted resolution A/RES/62/139, declaring 2 April World Autism Awareness Day to highlight the need to help improve the lives of children and adults who suffer from the condition, so they can lead full and meaningful lives. The rate of autism — a lifelong developmental disability that manifests itself during the first three years of life — is high in all regions of the world, and it has a tremendous impact on children, their families, communities and societies. The number of children and adults with autistic conditions continues to rise across every nation and social group.

“Let us remind ourselves that together — whether we represent Governments, civil society, the private sector or the United Nations itself — we can make a significant difference in our collective goal to create a more caring and inclusive world for people with autism,” said Peter Launsky-Tieffenthal, Under-Secretary-General for Communications and Public Information.

Children and adults with autism face major barriers associated with stigma and adverse discrimination, lack of access to support, discrimination, abuse and isolation, all of which violate their fundamental human rights, according to a General Assembly resolution (document A/RES/67/82) sponsored by Bangladesh and adopted in December 2012. Giving young children the early and correct treatment is crucial for improving their prognosis and giving them the chance to maximize their potential, according to the text.

Those issues will be explored during two panel discussions, co-organized by the United Nations Department of Public Information and the Permanent Mission of the Philippines, to be held at Headquarters on 2 April from 1:15 p.m. to 6 p.m. in Conference Room 2 of the North Lawn Building. Panellists addressing their respective themes, “Finding the ability in the disability of autism” and “Successful transition to adulthood”, will be Stephen Shore, Professor of Special Education at Adelphi University; Elaine Hall, founder of The Miracle Project, a groundbreaking theatre arts programme for autistic individuals profiled in the award-winning HBO documentary AUTISM: The Musical; Neal Katz, a teenager with autism who was featured in that film; Fazli Azeem from Pakistan, a graphic design Fulbright Scholar in Boston who is on the autism spectrum; and Idil Abdull from Somalia, who has a child with autism.

That segment of the event will feature musical performances by Talina and The Miracle Project. It will include performers with autism and remarks by Mr. Launsky-Tieffenthal, who will also open a book-signing event at the United Nations Bookstore from 11:30 a.m. to 12:30 p.m. with Stephen Shore, author of Beyond the Wall.

While public awareness remains low, global awareness of autism is growing. The new General Assembly resolution demonstrates a commitment to helping affected individuals and families, and encouraging Member States and others to strengthen research and expand delivery of health, education, employment and other essential services.

A related panel discussion titled “Addressing the socioeconomic needs of individuals, families, and societies affected by autism spectrum disorders and other developmental disorders” will be held on the new resolution’s implementation. It is co-organized by the Permanent Missions of Bangladesh, Bahrain, India, Qatar, Saudi Arabia and the United States, in collaboration with the Department of Public Information and the Department of Economic and Social Affairs. It will take place from 10 a.m. to 1 p.m. in Conference Room 2 of the North Lawn Building. On 4 April, the Permanent Mission of Israel will host a screening of the film This Is My Child at 1:15 p.m. in Conference Room E of the North Lawn Building.

Throughout its history, the United Nations has promoted the rights and well-being of persons with disabilities, including children with disabilities. In 2006, the General Assembly adopted the United Nations Convention on the Rights of Persons with Disabilities, which sought to change the view of persons with disabilities as “objects” of charity to seeing them as “subjects” — capable of claiming their rights and making life decisions on the basis of their own free and informed consent — and as active members of society, thus reaffirming the fundamental principle of universal human rights for all.

This year, the World Health Assembly will take up the subject of autism spectrum disorders at its Executive Board session in May, while the General Assembly will hold a high-level meeting on 23 September to address the condition of more than 1 billion persons with disabilities, including those with autism spectrum disorders.

Mr. Ban hopes leaders attending the meeting will “seize this opportunity to make a meaningful difference that will help these individuals and our human family as a whole”. The Secretary-General says: “Let us continue to work hand in hand with persons with autism spectrum disorders, helping them to cultivate their strengths while addressing the challenges they face so they can lead the productive lives that are their birthright.”

Contacts: Fred Doulton, tel.: +1 212 963 4466 or e-mail: doultonf@un.org; and Eileen Travers, Department of Public Information, tel.: +1 212 963 2897 or e-mail: travers@un.org.

—
By Matt Carey

HHS Secretary Kathleen Sebelius Statement on National Autism Awareness Month

4 Apr

The U.S. Secretary of Health and Human Services, Kathleen Sebelius, posted the following statement on April 2nd, in honor of Autism Awareness Month:

Every April during National Autism Awareness Month, we recognize the special challenges faced by those living with Autism Spectrum Disorders (ASD) and refocus our efforts on the best ways to support them and their families.

Autism is a developmental disability characterized, in varying degrees, by difficulties in social interaction, verbal and nonverbal communication, and repetitive behaviors. The latest figures from the Centers for Disease Control and Prevention (CDC) and the Health Resources and Services Administration (HRSA) leave no doubt that autism is a critical public health issue that deeply affects the lives of millions of Americans.

Research sponsored by the National Institutes of Health (NIH), CDC, and HRSA has advanced our understanding of risk factors underlying the development of ASD as well as supported the development and effective deployment of tools for early detection and intervention. Screening at younger ages is increasingly helping children to get the most effective treatments as soon as possible.

Today, NIH announced it has awarded $5.3 million in initial funding to two new recipients of the Autism Centers of Excellence (ACE) program. Eleven ACE centers around the country are now funded to support collaborative, multi-disciplinary science aimed at exploring the causes and identifying the most effective treatments for ASDs.

There is also a growing understanding of the significant needs people with ASD face, including support for education, employment and housing to allow them to fully participate in community life. Through the recent formation of the Administration for Community Living, the Department of Health and Human Services has strengthened its commitment to maximizing health, well-being, and independence for those with ASD and their families and caregivers.

The Affordable Care Act also is helping to meet the health care needs of those on the autism spectrum. Because of the health care law, insurers are not allowed to exclude children with autism based on their pre-existing condition. Beginning in 2014, it will be illegal for an insurer to discriminate against anyone because of a pre-existing condition or to charge more because of it. Also because of the health care law, children are now able to remain on their parents’ health plan until the age of 26. For young adults with autism and their families, that means more options and greater peace of mind.

Among the preventive services that health insurance plans must now cover with no out-of-pocket cost is autism screening for children at 18 and 24 months.

This month, let us renew our efforts to make advances through research and effective services and supports that will enhance the lives of the people and families—our children, friends, and neighbors—who struggle every day with autism.

For more information about ASD, see www.hhs.gov/autism.

Learn more about HHS and interagency activities related to ASD at www.iacc.hhs.gov.

For more information about the Affordable Care Act, see www.HealthCare.gov.

—
By Matt Carey

Presidential Proclamation — World Autism Awareness Day, 2013

4 Apr

I know I am late with the Autism Day announcements, but I thought it valuable to post some of these now. Here is a proclamation by President Obama on World Autism Awareness day:

BY THE PRESIDENT OF THE UNITED STATES OF AMERICA

A PROCLAMATION

Today, public health officials estimate that 1 in every 88 children in America is growing up on the autism spectrum. It is a reality that affects millions of families every day, from the classroom to the job market. And while our country has made progress in supporting Americans with autism spectrum disorders (ASDs), we are only beginning to understand the factors behind the challenges they face. On World Autism Awareness Day, we recommit to helping individuals on the autism spectrum reach their full potential.

To achieve that goal, we need a health care system that works for children and adults with ASDs. The Affordable Care Act prevents insurers from denying coverage to children on the autism spectrum, and it ensures new health plans must cover autism screenings at no cost to parents. Beginning in 2014, the Act will make it illegal for insurance companies to discriminate against men and women with preexisting conditions, including ASDs. And looking ahead, my Administration is investing in medical research that can help unlock tomorrow’s breakthroughs in autism detection, intervention, and education.

Leveling the playing field for Americans on the autism spectrum also takes commitment in our schools. That is why we are advancing initiatives to help students with ASDs get a good education free from discrimination and undue hardship. And it is why we are making sure that education can lead to meaningful employment by supporting vocational rehabilitation programs and opening higher education to more people on the autism spectrum.

All Americans should have the chance to live full, independent lives and follow their talents wherever they lead. This month, we recognize Americans with ASDs who are walking through doors of opportunity, and we recommit to opening them wider in the years ahead.

NOW, THEREFORE, I, BARACK OBAMA, President of the United States of America, by virtue of the authority vested in me by the Constitution and the laws of the United States, do hereby proclaim April 2, 2013, as World Autism Awareness Day. I encourage all Americans to learn more about autism and what they can do to support individuals on the autism spectrum and their families.

IN WITNESS WHEREOF, I have hereunto set my hand this first day of April, in the year of our Lord two thousand thirteen, and of the Independence of the United States of America the two hundred and thirty-seventh.

BARACK OBAMA

—
By Matt Carey

IACC Meeting next Tuesday (April 9)

4 Apr

The U.S. Interagency Autism Coordinating Committee will meet next Tuesday, April 9, at the NIH campus in Bethesda Maryland. The agenda reads

The committee will discuss autism related issues and will host activities in recognition of Autism Awareness Month and World Autism Awareness Day.

The meeting is to be held at

The National Institute of Mental Health
The Neuroscience Center
6001 Executive Boulevard, Conference Rooms C and D
Rockville, Maryland 20852

The meeting will also be webcast live.

More information can be found at the IACC website.

—
By Matt Carey

note: I serve as a public member to the IACC but all comments here and elsewhere are my own.

IMFAR program is now online

4 Apr

IMFAR, the International Meeting for Autism Research, is held in the spring of each year. Which makes me wonder, did the people who organized this have to go through IEP meetings? I ask because IEP meetings are often are held at the end of the school year and include a lot of evaluations, making it difficult for a parent to attend a Spring research meeting? It isn’t a parent conference, so this is really just an observation.

IMFAR is the top science conference for autism. It is big and it is where a lot of new work is presented. The meeting will be held in May and the abstracts will be available May 1st. But the program, meaning the titles of the talks, are available now. I’ve just done a little browsing and found some talks which are likely to spark conversations. These may not be the talks which reflect the research most likely to impact the lives of autistics and the broader autism communities, but I suspect these will be interesting to the online parent community. For example, one doesn’t need the abstract to get the conclusion of this talk: No Differences in Early Immunization Rates Among Children with Typical Development and Autism Spectrum Disorders. This paper is by the U.C. Davis MIND Institute, which carries a lot of weight with the groups who promote the vaccine-induced autism-epidemic idea, so perhaps this will help to move the discussion forward from the vaccine-focus of the past decade. One can hope.

On the first day, a keynote talk is being held: How Severe Is Autism – Really?

This session reviews the coexisting problems that usually exist in individuals with a diagnosis of autism spectrum disorder. It concludes on the note that it is possibly these associated problems and disorders that often drive the poor outcome that so many people now almost take for granted will be a consequence of autism in the longer term perspective. Language disorders, intellectual developmental disorders, non-verbal learning disability, epilepsy, medical disorders such as tuberous sclerosis and fragile X syndrome, ADHD, and depression are often the “real” cause of negative outcome in autism. Many people in the general population have marked autistic features without major “lifetime impairment”. The focus on *autism only* in early intervention programs is most likely a mistake.

And you probably thought when I said there would be talks which would likely “spark conversations” online, I was just talking epidemiology and etiology.

A recent paper proposed a correlation between a mother’s childhood history of abuse and autism risk in her children. (Emily Willingham discusses this study at Forbes). It appears the same team has a poster at IMFAR: Maternal Exposure to Childhood Abuse Is Associated with Elevated Risk of Autism. A big open question from that work is this: are autistics more likely to be abused as children? Which could make the link heritable. Which makes it interesting that this poster is in the same session at IMFAR:Epidemiology of Neglect and Maltreatment in Children with Autism Spectrum Disorders

There is an entire session on the ethical questions posed by biomarker research.

While the development of a blood biomarker as a screening or diagnostic tool for autism spectrum disorders is of great interest to the scientific and medical communities, it is also attracting intense scrutiny from other stakeholders including people with autism, ethicists, and parents. This symposium will therefore address the scientific, ethical and social challenges associated with the development of biomarkers for autism, and provide an update on the current status of research in this field. We will describe how the heterogeneity of autism, gender bias, and potential comorbidities, could derail the promise of identifying objective, reliable, and universally accepted biomarkers. We will consider the ethical and social issues relating to the development of biomarkers for autism in order to identify and describe the implications for the ‘difference versus disability’ debate; as well as consider possible wider tensions of biomarker research in relation to issues such as pre-natal screening and reproductive choice, and identity and inclusion for individuals on the autistic spectrum. Finally, we will summarize the most promising research on blood biomarkers for autism, describing the required steps to take a putative biomarker from the ‘bench to the bedside’. This educational symposium brings together researchers from scientific, ethical and psychological disciplines to provide a unique perspective on the utility of biomarkers for ascertaining autism risk, aiding in diagnosis and identifying therapeutic targets, all within the framework of the relevant ethical and social considerations.

Here’s the sort of research I wish were the sort to “spark conversations”. Adaptive Intervention For Communication In Minimally Verbal School Aged Children. That is a study I really want to see. Likewise, I am pleased to see an entire session on Young Children, Schools. And Adults, Lifespan, Methods. And services.

Terry Brugha, who headed up the U.K.’s adult autism prevalence studies of recent years will present: The Autism Epidemic Hypothesis: the Association of Autism With Age in the General Population.

There is a large international focus, with research from India, China, South America and other areas usually under represented in research. Another keynote talk discusses this in terms of epidemiology: The Epidemiology of Autism Spectrum Disorder: Toward a More Inclusive World:

We live in an era of exciting advances in our awareness and understanding of autism spectrum disorder, but also a time of enormous global imbalance. Most of what is known about the epidemiology, genetics, clinical manifestation and course, treatment, and nearly every other aspect of autism is based on research in high income countries, where fewer than 10% of births occur and less than 20% of the population lives globally. This talk will describe opportunities to expand the horizons of autism epidemiology and service delivery to include the 80 to 90% of affected individuals and families who live in low and middle income countries, as well as those who are socioeconomically disadvantaged and living in high income countries. It will also describe some of the cultural and financial barriers to progress, and make a case for incorporating concepts of the World Health Organization’s International Classification of Disability and Functioning into the classification and epidemiology of autism spectrum disorder, with the ultimate goals to include not only primary prevention of autism but also enhancement of participation and social inclusion of people with autism spectrum disorder.

One session is: 30-Year Follow-Up of Autism in Adulthood.

The population of adults with ASD is increasing rapidly, entering systems of healthcare and adult support that are already at capacity. Understanding the nature of ASD in adults, their unique needs, and availability of service options, is essential for resource planning and service development. Investigations into this period of life are increasing, but much remains unknown. This study examines adult outcomes for a large, population-based sample of adults identified as children in the 1980’s. Outcomes of interest concern diagnostic presentation, functional abilities, co-occurring medical and psychiatric conditions, social functioning, independence, service use, and access to services. Overall, outcomes for this sample were consistent with what has been reported for similar samples, yet there were notable differences in factors contributing to outcomes compared to what has been reported for other groups. Our findings support the importance of a range of accessible healthcare and support service options for adults with ASD. Detailed analyses are underway to investigate patterns leading to specific outcomes for subgroups of the population of adults with ASD.

I would have written that abstract a bit differently, but I am very appreciative that this session is being held.

Two years ago, I was able to attend IMFAR with the help of an Autism Science Foundation grant. I really wish I was able to attend this one. There looks to be a great deal of interesting research being discussed.

—
By Matt Carey

Action Alert from Arc/UCP of California: Call now to prevent regional centers charging for early intervention

3 Apr

There has been a major move in recent years to get insurance coverage for behavioral therapies for autism. Such a law was passed recently in California. The Regional Centers, who administer support for disabled Californians, have welcomed this shift of costs for early intervention services to insurance companies. The regional centers are “payers of last resort”. So, if you have insurance, the regional centers look to that to pay for therapies before they pay. All well and good. But here’s a new wrinkle: they are now trying to avoid paying the copays. Families with insurance will have to pay copays, coinsurance and deductibles for this therapy. In other words, families with insurance will have to pay part of the costs, where families without insurance pay nothing.

The Action Alert below makes this much more clear and tells people where they can call to try to keep this change from happening:

Dear Monterey, San Luis Obispo, Santa Clara, and Santa Cruz County Friends,

If you have health insurance that covers autism, early intervention, or any other treatment for you or a family member with a developmental disability, there’s a real danger that the Legislature is about to stop the regional centers from covering your copays, coinsurance, and deductibles.

But your local state senator, Bill Monning, is in a position to stop this terrible idea, which would make people with insurance pay for Lanterman Act services that everyone else gets free. Senator Monning is the chair of the Senate budget subcommittee that probably will decide the issue – one way or the other – on Thursday, April 11.

Please call Senator Monning TODAY. Ask him to stop the Brown administration’s budget “trailer bill” that would release the regional centers from their legal obligation to cover copays and deductibles for services and supports that are listed in approved IPPs or IFSPs. Tell him that, instead, he should amend the bill to make it clear that the Lanterman Act requires the regional centers to cover copays and deductibles.

A call like that is easier than you might think. And even a few calls sometimes can make the difference in how a legislator votes. I know, I used to work for legislators and get calls like that, and they really sometimes did make the difference.

Here are some hints on how to make those calls: http://www.thearcca.org/46.html. His number is 916-651-4017.

And here’s the background:

Two years ago, we and virtually all the autism groups in the state supported a bill to require insurance companies to cover autism treatments that are in approved IPPs and IGSP. The bill passed and Governor Brown signed it, thanks to a lot of hard work by a couple of very dedicated legislators, all the disability groups, and a lot of people like you.

The bill was clearly intended to help people with autism and their families, not impose new costs on them. And there’s not a word in the bill that allows regional centers to pass these costs on the people with autism or their families. The Association of Regional Center Agencies even sought and obtained a legal opinion making it clear that the regional centers must cover copays. But some regional centers disagree. We’re heard from people whose copays and deductibles are so high they literally can’t afford the treatments that the Lanterman Acts says their family members are entitled to.

And now the Brown administration has proposed a budget “trailer bill” to say the regional centers don’t have to cover copays – and even to prohibit them from covering deductibles. We want to amend the bill to do the opposite.

Please look at the hints above and call Senator Monning today. And please send me an email and let me know how the call goes.

And then forward this to anyone you know in your area who might be willing to call. A few calls really might make the difference.

Thank you for your advocacy.

Greg

Greg deGiere
Public Policy Director
The Arc and United Cerebral Palsy in California
1225 – 8th Street, Suite 350, Sacramento, CA 95814

—
By Matt Carey

Autism risk not increased by “Too Many Too Soon”

29 Mar

The idea that vaccines are a primary cause of autism has been around for some time. The idea took off in the 1990’s when Andrew Wakefield claimed that the MMR was causing autism, including suggesting that not only was MMR causing autism but was responsible for the rise in diagnoses observed. Later, the idea that the increase in thimerosal exposure in the pediatric vaccine schedule of the 1990’s in the US was proposed by some groups as causing the increase in diagnoses. Both ideas have since been shown to be invalid. As the evidence mounted that the idea that thimerosal and/or MMR caused an autism epidemic was false, the idea that the increase in vaccines themselves was causing autism. This idea was popularized by Jenny McCarthy of Generation Rescue in the slogan “too many too soon”.

The study is in the journal Pediatrics (full version available free): Increasing Exposure to Antibody-Stimulating Proteins and Polysaccharides
in Vaccines Is Not Associated with Risk of Autism.

The abstract:

Objective To evaluate the association between autism and the level of immunologic stimulation received from vaccines administered during the first 2 years of life.

Study design We analyzed data from a case-control study conducted in 3 managed care organizations (MCOs) of 256 children with autism spectrum disorder (ASD) and 752 control children matched on birth year, sex, and MCO. In addition to the broader category of ASD, we also evaluated autistic disorder and ASD with regression. ASD diagnoses were validated through standardized in-person evaluations. Exposure to total antibody-stimulating proteins and polysaccharides from vaccines was determined by summing the antigen content of each vaccine received, as obtained from immunization registries and medical records. Potential confounding factors were ascertained from parent interviews and medical charts. Conditional logistic regression was used to assess associations between ASD outcomes and exposure to antigens in selected time periods.

Results The aOR (95% CI) of ASD associated with each 25-unit increase in total antigen exposure was 0.999 (0.994-1.003) for cumulative exposure to age 3 months, 0.999 (0.997-1.001) for cumulative exposure to age 7 months, and 0.999 (0.998-1.001) for cumulative exposure to age 2 years. Similarly, no increased risk was found for autistic disorder or ASD with regression.

Conclusion In this study of MCO members, increasing exposure to antibody-stimulating proteins and polysaccharides
in vaccines during the first 2 years of life was not related to the risk of developing an ASD.

The study included autism with regression.

Of the 321 potential case children who participated in standardized assessments, 256 (79.8%) met study criteria for ASD. Among these 256 children, 187 (73%) met the stricter criteria for AD and 49 (19%) met the criteria for ASD with regression.

The authors begin the discussion section with:

We found no evidence indicating an association between exposure to antibody-stimulating proteins and polysaccharides contained in vaccines during the first 2 years of life and the risk of acquiring ASD, AD, or ASD with regression. We also detected no associations when exposures were evaluated as cumulative exposure from birth to 3 months, from birth to 7 months, or from birth to 2 years, or as maximum exposure on a single day during those 3 time periods. These results indicate that parental concerns that their children are receiving too many vaccines in the first 2 years of life or too many vaccines at a single doctor visit are not supported in terms of an increased risk of autism.

Are there limitations to this study? Sure. Enough to discount it or disregard it? No. Will some people discount it and disregard it? Yes.

Thimerosal doesn’t increase autism risk. MMR doesn’t increase autism risk. Number of antigens in vaccines doesn’t increase autism risk. There is limited researcher time and money in this world. It is good that we are applying those resources to other areas of autism etiology.

The CDC discusses this at Vaccines not associated with risk of autism. Shot of Prevention discusses this in Study Concludes Concern Over “Too Many, Too Soon” is Unfounded.

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By Matt Carey

Autism Rate 2%, what now?

25 Mar

Autism prevalence data are always news makers. Although, maybe it’s just me, but the announcement of a new autism prevalence estimate for the U.S. didn’t seem to be as big a news story as previous reports. That said, so much of the discussion around prevalence estimates centers on “what does this tell us about the past” or “what about the future”.

“What does this tell us about the past” is the discussion around “was there/is there an epidemic (usually with an explicit or implicit reference to vaccines)”. “What about the future” is usually a discussion focused on the economic burden and what happens in we project the trends out to the future.

But what about right now? We have roughly 2% of our school age children in the U.S. who are autistic. Disabled to various degrees. Probably a like number of adults as well. For those who don’t accept this notion, keep in mind that one of the major themes of the recent report was how a large fraction of autistics were identified late. They had fallen through the cracks and were possibly not receiving the supports they needed. We are talking teenagers, not just young children. It isn’t that great a leap to say that we there is a large population of unidentified autistic adults.

Most news stories and most discussion will focus on one number: 2%. I would argue, and will argue, that a factor of at least equal importance is not how many autistics there are, but how diverse this population is and how little is really known.

There is no biological test for autism. As this study and many others have shown, the understanding of what autism is, even behaviorally, is still evolving. And this is important whether you take a medical model of autism or a disability model or some combination of the two.

We (a society of autistic and non-autistic people) need to give autistics the tools and supports needed to succeed in this world, with various definitions of success. And we can’t do that if we don’t understand what is needed. 2% is a number that can grab people’s attention. And that includes politicians. But to me, the bigger issue is the breadth of the spectrum. The diversity of the autistic population. Consider the report again. There are so many ways to look at the data, but let me pick some facts to highlight. The prevalence estimate for 10-13 year olds was about 2.4%. Of this, roughly half fall into the so-called “mild” autism category. Only 5% of parents placed their child into the “severe” category. Of course, there is no real definition of mild, moderate, or severe to use for this, and parents might be biased to report milder needs, but let’s go with the structure we are given. But, in the end, 1%, 5%, 95%, is less important than the fact that there are subpopulations of autistics which needs a very different support structure than others.

Many people discussing the new prevalence values focus on the need to have the money to provide supports (be it in the home, the school or the workplace, medical or non-medical) for a wide variety of autistics. But in order to do that, we have to know what supports and tools are needed. I know this is getting repetitive, but no amount of money can give autistics, parents, teachers, caregivers and employers the tools needed if we don’t know what the appropriate tools are.

There is a broad spectrum of autism, and a broad spectrum of ages. Perhaps the most overlooked area of autism, be it research or supports and services, are the needs of adults. Many parents tend to categorize autism by IQ, with a linear spectrum with those with lower IQ’s on one side and those with higher IQ’s on the other. Even with this simple model, we have a huge matrix of needs for autistics: with age on one axis, and IQ on another. But the IQ-category idea is too simplistic. Which means, the real matrix of needs we have to understand is multidimensional.

Ask someone outside the community who has a basic understanding of the autism discussion, “what should we do for autistics?” and you are likely to get, “behavioral intervention”. OK, for some fraction of a young population, that may be a good answer. Maybe, one might argue, truly individualized education plans (IEP) will allow parents and teachers to customize supports for the needs of the autistic during school. That’s how it is supposed to work, but this process would be much more efficient if we had better recommendations for autistic students of all ages.

It is worth taking a moment here to point out that here is a point where more money directly into services is needed. Mention special education to a school administer and you are likely to hear “unfunded mandate”, “budget”, and “encroachment”. We in the U.S. have never lived up to our responsibility to support special education as promised from a federal level (federal special education support is less than 1/2 what was promised). And it isn’t like state and local governments are supporting special education to the levels needed.

But that’s just school. What about transition to adulthood? Thank god for people like Paul Shattuck who has been asking these questions, but this study only came out last year. And adulthood and autism has recently been referred to as “the great unknown” in one paper.

And medical issues? These get a lot of discussion, especially in online parent forums. Ask what medical conditions are more common in autistics and you will likely hear, “GI complaints”, “immune dysfunction”, “metabolic dysfunction”. Anyone want to venture a guess as to what are, by far, the most common comorbid conditions to autism in children? Neurological disorders and mental health conditions. Autistics are 25 times more likely to have one or both of these. And what happens in older populations? Another “great unknown”.

So, yes, 2% is big. And it’s important. And it will get people’s attention. But if we don’t know what tools or how to support any given segment of the population, it’s just saying how many people we can’t support.

Of course we need to take autism seriously. It doesn’t matter if 2%, 0.2% or 0.02% of the population are autistic, it is still important. But we need to recognize that there are whole areas of questions we haven’t even asked yet, much less found good answers for. It is hard to package this essage into a sound bite, but the focus needs to be on the breadth of the questions, not just te size of the population.

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By Matt Carey

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