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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.

—
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.

—
By Matt Carey

CDC-HRSA report: Changes in Prevalence of Parent-reported Autism Spectrum Disorder in School-aged U.S. Children: 2007 to 2011–2012

20 Mar

A new report came out today: Changes in Prevalence of Parent-reported Autism Spectrum Disorder in School-aged U.S. Children: 2007 to 2011–2012. I’ll come back for more detail and discussion soon, but the bottom line: the autism prevalence estimate for the US is now about 2%. 3.23% for boys.

Here is the press release for this:

CDC and HRSA issue report on changes in prevalence of parent-reported

Autism Spectrum Disorder in school-aged children

Who: CDC’s National Center for Health Statistics and the Health Resources and Services Administration

What: “Changes in Prevalence of Parent-Reported Autism Spectrum Disorder in School-Aged Children: 2007 to 2011-2012.”

The report was co-authored by HRSA and data collection was conducted by the CDC. The data come from the National Survey of Children’s Health, a nationally representative phone survey of households with children. This survey is conducted every four years.

Main findings of the report:

· The prevalence of parent-reported ASD among children aged 6-17 years was 2 percent in 2011-2012 compared to 1.2 percent in 2007.

· The change in prevalence estimates was greatest for boys and for adolescents aged 14 to 17 years.

· Children who were first diagnosed in or after 2008 were more likely to have milder ASD than those diagnosed in or before 2007.

· Much of the increase in the prevalence estimates from 2007 to 2011-2012 for school-aged children was the result of diagnoses of children with previously unrecognized ASD.

The report is available at http://www.cdc.gov/nchs.

For information about HRSA’s autism efforts visit http://mchb.hrsa.gov/programs/autism/index.html.

For information about CDC’s autism efforts visit http://www.cdc.gov/ncbddd/autism/index.html.

As indicated above, there are clearly social factors at play involving identification of individuals previously unidentified. For example: If one looks at the prevalence estimate for 6-9 year olds in 2007, a value of 1.31% was obtained. In 2010-11, the prevalence for children born in the same years (now aged 10-13 years old) is 2.39%. In other words, children born in the years 1998-2001 saw an big increase in the estimated autism prevalence.

For the 2010-11 report, about 1/3 of the children were diagnosed after 2008. These are children 6-17 years old, so they were born in 2005 and before. About 30% of children born in 1998-2001 were diagnosed after 2008. These are children aged 7-13.

And, yes, this means that the thimerosal hypothesis, the notion that the increased exposure to thimerosal from vaccines in the 1990’s cause an autism-epidemic, is even less viable. There are obviously a number of social influences behind the increase in autism prevalence estimates in the U.S.. These could mask a “real” increase (or, interestingly, a real decrease). But had thimerosal been a primary driver of the increased prevalence, the prevalence would be dropping. The prevalence for children 6-9 years old, children born after the phase out of thimerosal, now is estimated at 1.82%.

—
By Matt Carey

Autistic People Should…get a high five

8 Mar

During the past couple of weeks, a time when my focus has been on old and tired subjects, a small change in the online world happened. Small in the grand scheme of things, but a very good step forward. I’m speaking of the movement to change the way Google handles the phrase “autistic people should” in their auto-complete offerings.

Ever notice how as you enter terms in the search box for Google, it creates suggestions for you? Well, it turns out that sometimes those suggestions are ugly. For example, if you entered “autistic people should” you would get answers like “die” or “be exterminated”.

Autistic self advocates reacted and got Google to respond. Consider this story:

Google eliminates ‘die’ search suggestion for autism

The “auto-complete” function attempts to save time by suggesting the most common searches that match a user’s first few words. In the case of autism, three of the four suggestions could double as bumper-stickers for hate speech.

Sparrow acknowledged the search engine algorithm isn’t the problem; it is, rather, the frequency of the hostile search terms typed in by Google’s users.

They took a screenshot of what the auto-complete used to look like:

12345234-large

I’ll admit that the number 1 answer I get right now is “autistic people should killed”, but the rest are changed and we can hope that as the changes Google puts into place take effect, this will change as well.

It’s a small change, though. We live in a world where many people, apparently, enter “autistic people should be killed” into Google.

Autism Speaks took notice of the story linked above. They had a short teaser on their site, one that didn’t point out the efforts of the autistics who made it happen. And then, after some pressure, “Updated 3/6/13 to reflect the amazing efforts of the self-advocacy community”

Congratulations to those who made this change happen.

—
By Matt Carey

In the News: John L. Young, a partner of Mark Geier, had his medical license suspended

6 Mar

The Baltimore Sun has an article up: USM regent said to have used controversial therapy for autism, subtitled: John L. Young, a partner of Mark Geier, had his medical license suspended.

USM in the Univiersity System of Maryland. John L. Young was a Regent of USM. And a former business partner for Mark Geier. From the article:

In the order suspending Young’s license, the Board of Physicians concluded he wrote Lupron prescriptions for nine of Geier’s patients, who ranged in age from six to 17 and who all lived outside of Maryland. The board also said in the order that Young, who sometimes used Skype to speak with patients, broke restrictions against prescribing medicine for people who live outside of the state.

Young’s actions “constitute a substantial likelihood of risk of serious harm to the public health, welfare and safety,” the board wrote in the suspension order. The board did not say Young used chelation therapy.

If I interpret this correctly, after his license was supsended, Mark Geier was using his partner to continue the Lupron perscriptions.

Geier’s theory was that autism was the result of high levels of mercury from vaccinations and that too much testosterone exacerbates the symptoms, hence the use of both Lupron and chelation therapy. Geier diagnosed the children with early-onset puberty, usually a rare diagnosis, and used Lupron to control their hormone development.

I note that the patients range in age from 6 to 17. 17’s a bit old for “precocious puberty”.

Mr. Young was to serve as a regent until 2014. He is not presently on the website for the board of regents.

It appears that the Maryland medical board is recognizing that prescribing Lupron itself as an autism treatment is worthy of censure.

—
By Matt Carey

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