Left Brain Right Brain

Why is so much attention and so much money spent on genetics and autism? How about 75.8% of autism parents think that genetics is involved with autism. How many believe in vaccine causation? 41.8%. Less than half. 42% is a sizable minority, but less than the fraction who felt the will of God was involved (46.3%). Parents with a child who regressed were much more likely to endorse vaccines as a possible cause.

What do autistics think? I’ve never seen a study where someone asked.

So often in the online discussions I’ve been told, “well, if you had ever spoken with a parent of a child with autism you’d think differently”. This happens after making it clear that I do not subscribe to the vaccine-induced-autism-epidemic notion. Many people take it as a given that autism parents all think that vaccines are behind the increase in diagnoses. But as we see, that’s just not the case. In fact, the majority of parents don’t endorse vaccine causation. The study I’m referring to is being presented at IMFAR this week: Regression in Children with ASD: Associations with Parents’ Beliefs about Causes of ASD. The abstract is below.

To pull one line from the abstract: “The five causes that families most frequently endorsed were genetics (75.8%), child’s brain structure (59.7%), will of God (46.3%), toxins found in vaccines (41.8%), and environmental pollution (37.4%). ”

It would be interesting to see how the statements are phrased. Saying, “genetics may be involved with autism” is different than “genetics was involved with my child’s autism”.

Here’s the abstract:

Background: Parent-reported developmental regression occurs in an average of one-third of children with autism spectrum disorder (ASD). While prospective, clinician-rated studies detect higher rates of skill losses, understanding parent perception of this phenomenon is valuable, as it may subsequently color parents’ thoughts about ASD and decisions they make on behalf of their families. Limited data suggest that parents who observed regression in their children were significantly more likely to believe that external factors—most often vaccines—caused ASD (Goin-Kochel & Myers, 2005). Fears about immunizations causing autism is now one of the leading reasons behind a growing trend of delayed or refused vaccine uptake (Offit, 2008), which has important public-health ramifications (e.g., increased disease outbreaks). Understanding more about how regression shapes parents’ beliefs and actions is key to developing targeted education efforts.
Objectives: (a) To provide descriptive information about regression status across three related samples; (b) To assess parents’ degree-of-agreement with various potential causes of ASD; and (c) To determine whether child history of regression is associated with beliefs about causes of ASD.

Methods: Data were analyzed for children with ASD (probands; N=2758; M age=9 years, SD=3.6 years, range=4—17.9 years) who participated in the Simons Simplex Collection (SSC). Regression was defined according to the Autism Diagnostic Interview—Revised (ADI-R), with rates of language and social-skill losses calculated for the full SSC sample; SSC probands from the Baylor College of Medicine (BCM) site (n=203); and a subset of BCM probands who were recontacted for additional data collection (n=68), including parents’ beliefs about causes of ASD via the Revised Illness Perception Questionnaire (IPQ-R; Moss-Morris, et al., 2002). Frequencies of agreement/disagreement with possible ASD etiologies were calculated for the IPQ-R’s 21 closed-ended items about potential causes. Qualitative analyses were used to categorize parents’ open-ended rankings of their top three beliefs about causes of ASD. ANOVA’s were conducted to determine whether parents’ degree-of-agreement with various etiologies differed according to their child’s regression status.

Results: Regression rates were only slightly higher in the BCM samples: full SSC=29.5%, full BCM=34%, recontacted BCM=35.3%. The five causes that families most frequently endorsed were genetics (75.8%), child’s brain structure (59.7%), will of God (46.3%), toxins found in vaccines (41.8%), and environmental pollution (37.4%). Parent-provided causes were organized into 10 categories, with genetics/heredity being first-ranked among the largest proportion of parents (42.6%); however, external factors were ranked (i.e., 1st, 2nd, or 3rd) by nearly 84% of families as causing ASD. Parents who reported regression in their children were more likely to agree with “toxins in vaccines” (F[1,66]=3.74, p=.05) and “environmental pollution” (F[1,66]=3.25, p=.07) as causes.

Conclusions: Findings support an association between parent-reported regression in children with ASD and parental endorsement of vaccines/external mechanisms as causing autism, even within this small subsample. That so many also endorsed “will of God” may reflect potential geographical and/or cultural differences within the BCM subsample. Replication of this study at other SSC sites will elucidate varying belief patterns by locale for targeted education efforts.

This isn’t the first of these studies. I’ve seen ~20% and ~40% as the fraction of autism parents who subscribe to vaccine-causation in studies before.

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By Matt Carey

There are groups, some within the autism communities and some external, who are doing the autism communities harm. Ironically they think they are helping, leading, changing the world. Many of these groups and people adhere to the idea that the rise in autism diagnoses is due to vaccines. Yesterday I wrote about how individuals from these groups have stooped so low as to threaten high school student filmmakers (Faux advocates embarrass the autism communities by attacking high school students and their film project). Today I’m sadly writing about another embarrassing incident: making a statement by photoshopping an important statement by Michelle Obama

In case you haven’t seen it, the First Lady of the United States, Michelle Obama, posted this picture to Twitter (click to enlarge):

Ms. Obama is referring to the mass abduction of girls from their school in Nigeria.

The Nigerian abduction story has been in the news for some time and Ms. Obama’s statement garnered a great deal of attention. And with good attention sometimes comes bad. Consider this effort by the faux autism advocate community: (click to enlarge)

Yes, the faux autism advocates decided to try to get some attention for themselves using Ms. Obama’s picture. In case you are wondering, yes I mean attention for themselves. Consider the statement Ms. Obama publicized: “Bring Back Our Girls”. Simple. Direct. Calls for action. Now consider the statement by the faux autism advocates. Long and doesn’t actually call for real action. Read it again if you missed that. All the action they call for is to call autism an epidemic and a crisis. They are calling for someone to accept their views on autism. They didn’t take the opportunity to say, oh, “We need more support”. “We have 1.2M people with great needs”. No. They called for attention for themselves and their agenda. And they did it in a way that reflects very poorly (to be polite) on the autism communities.

I’m not the only one who finds this effort by the faux autism advocates offensive. Consider these comments from the Canary Party’s (one of the faux autism advocate groups) facebook page:

I work with children who have Autism. I don’t know what to get mad at first. The photoshopping? The callous comparison? The horrible idea that children with a genetic disability are “missing”? The inability to understand what the word epidemic means? Revolting.

How sick and sad! This to me appears that you HATE autistic people- seeing how you view them as “missing” or “damaged” or “soulless”
The very fact you think it needs to be cured is disgusting!

Of the three autistic children I know, two are unvaccinated and they are siblings…this makes me think that autism is genetic and absolutely NOT caused by vaccines.

This is a really gross way to push your agenda…photo shopping a pic of the First Lady?! Insulting those with autism…just ick.

What a shameful way to promote your agenda… The Canary Party’s decision to photo shop this image in particular trivializes the real danger and terror that these young Nigerian girls are going through right now.

You can go to the Canary Party Facebook page and see that, yes, there are some comments supporting the picture. And, in some strange irony, advertisements for faux autism cures. Somehow this is a business opportunity for someone to put his wares in front of autism parents. But most of the comments are very critical of this photoshopped picture.

Let’s go through the faux autism advocate message. Let’s call the 1.2M autistics an epidemic. A crisis. That’s what they want. Not help. Not support for autistics. Labels. Consider this: they’ve been calling autism an epidemic and a crisis for many years. When has it ever helped?

Consider that number: 1.2 million autistics. There’s heavy irony in them using that number. 1.2M is based on an estimate of the number of autistic children in the US based on the recent CDC autism prevalence report. Somehow adults just don’t count to whoever did that photoshop. Also, 1.2M is an estimate assuming that the prevalence is flat among all children. Think about that. 1.2M is a number that basically assumes no epidemic in the past roughly 20 years.

This is an example of why I don’t consider these group and these individuals to be autism advocates but faux autism advocates. They are not helping. They are in the way.

Right now the estimate is that there are 1.2 million autistic children in the U.S.. The real number is almost certainly higher. And there are many more adults. When have these supposed autism advocates called for a real count of autistic adults in this country? The answer is that they haven’t. Such a count would likely give more data to counter their message of a vaccine induced epidemic. Ironically it would move us closer to actually determining if there is a real rise in the fraction of our population who are autistic. It would be a big step forward in understanding the needs of autistic adults. It would be a step towards learning what helped some autistics gain independence or greater independence. And what may have held some back. There’s so much we could learn. So much that frankly could help my kid. But instead we have people crying out for acknowledgement of their failed opinions, not real steps forward.

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By Matt Carey

A paper came out in the past few days: What should autism research focus upon? Community views and priorities from the United Kingdom. I haven’t seen the whole paper but here’s the abstract:

The rise in the measured prevalence of autism has been accompanied by much new research and research investment internationally. This study sought to establish whether the pattern of current UK autism research funding maps on to the concerns of the autism community. Interviews and focus groups were conducted with autistic adults, family members, practitioners and researchers to identify their priorities for research. We also captured the views of a large number of stakeholders via an online survey. There was a clear disparity between the United Kingdom’s pattern of funding for autism research and the priorities articulated by the majority of participants. There was general consensus that future priorities for autism research should lie in those areas that make a difference to people’s day-to-day lives. There needs to be greater involvement of the autism community both in priority setting and in research more broadly to ensure that resources reach where they are most needed and can make the most impact.

My comment is simple: Yes. Yes. And yes:

1) There was a clear disparity between the United Kingdom’s pattern of funding for autism research and the priorities articulated by the majority of participants.
2) There was general consensus that future priorities for autism research should lie in those areas that make a difference to people’s day-to-day lives.
3) There needs to be greater involvement of the autism community both in priority setting and in research more broadly to ensure that resources reach where they are most needed and can make the most impact.

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By Matt Carey

The Food and Drug Administration (FDA) in the U.S. has issued a statement: Beware of False or Misleading Claims for Treating Autism.

The statement is copied below. I applaud the FDA for taking this move. At same time, while this statement is encouraging:

According to Gary Coody, R.Ph., FDA’s national health fraud coordinator, the agency has warned a number of companies that they are facing possible legal action if they continue to make false or misleading claims about products and therapies claiming to treat or cure autism

I’ve had difficulty finding the warning letters on the FDA website. Consider this, in 2010, the FDA issued a statement on MMS (‘Miracle’ Treatment Turns into Potent Bleach). Last year, they issued a statement on HBOT (Hyperbaric Oxygen Therapy: Don’t Be Misled. And, yet, these are still promoted. HBOT promotion appears to have peaked and chelation is nothing like it was a few years ago (a recent survey had fewer than 1% of families subjecting their children to chelation). It’s difficult to judge the actual popularity of MMS, but it is promoted year after year at the AutismOne conference (with the title this year “Healing Autism” and the claim that it has contributed to children losing their autism diagnosis. These would seem to be the type of specific claims that the FDA could act upon).

This said, the FDA has had some successes. As noted, chelation is down. My guess is this is largely due to the fact that thimerosal is out of vaccines and it’s extremely clear that thimerosal didn’t cause the upsurge in autism diagnoses seen in the US in the past few decades. The FDA put a stop to the marketing of a synthetic chemical (OSR #1) that was promoted as a “supplement” but was, in fact, an industrial chelating compound.

Here is the FDA statement:

April is National Autism Awareness Month, a fitting time to think about the growing need for concern and awareness about autism.
One thing that is important to know up front: There is no cure for autism. So, products or treatments claiming to “cure” autism do not work as claimed. The same is true of many products claiming to “treat” autism. Some may carry significant health risks.

The Food and Drug Administration (FDA) plays an important role in warning these companies against making false or misleading claims.

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About Autism
According to the Centers for Disease Control (CDC), about 1in 68 children has been identified with an autism spectrum disorder (ASD). ASDs are reported to occur in all racial, ethnic and socioeconomic groups, and are almost five times more common among boys (1 in 54) than among girls (1 in 252).
The National Institutes of Health (NIH) describe autistic children as having difficulties with social interaction, displaying problems with verbal and nonverbal communication, exhibiting repetitive behaviors and having narrow, obsessive interests. These behaviors can range in impact from mild to disabling.

“Autism varies widely in severity and symptoms,” says Amy Taylor, M.D., M.H.S., a pediatrician at FDA. “Existing autism therapies and interventions are designed to remedy specific symptoms and can bring about improvement,” she adds.

In addition, FDA has approved medications that can help some people manage related symptoms of ASD. For example, the FDA has approved the use of antipsychotics such as risperidone and aripripazole to treat children 5 or 6 years of age and older who have severe tantrums or aggression and self-injurious behavior. Before using any behavioral intervention or drug therapy (prescription or over-the-counter), check with your health care professional.

The Association for Science in Autism Treatment (ASAT), a not-for-profit organization of parents and professionals committed to improving the education, treatment, and care of people with autism, says that since autism was first identified, there has been a long history of failed treatments and fads.

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FDA Cracks Down on False Claims

According to Gary Coody, R.Ph., FDA’s national health fraud coordinator, the agency has warned a number of companies that they are facing possible legal action if they continue to make false or misleading claims about products and therapies claiming to treat or cure autism. Some of these so-called therapies carry significant health risks and include:

“Chelation Therapies.” These products claim to cleanse the body of toxic chemicals and heavy metals by binding to them and “removing” them from circulation. They come in a number of forms, including sprays, suppositories, capsules, liquid drops and clay baths. FDA-approved chelating agents are approved for specific uses, such as the treatment of lead poisoning and iron overload, and are available by prescription only. FDA-approved prescription chelation therapy products should only be used under medical supervision. Chelating important minerals needed by the body can lead to serious and life-threatening outcomes.

Hyperbaric Oxygen Therapy. This involves breathing oxygen in a pressurized chamber and has been cleared by FDA for certain medical uses, such as treating decompression sickness suffered by divers. It has not been cleared for autism, among other conditions.

Miracle Mineral Solution. Also known as Miracle Mineral Supplement and MMS, this product becomes a potent chemical that‘s used as bleach when mixed according to package directions. FDA has received reports of consumers who say they experienced nausea, severe vomiting and life-threatening low blood pressure after drinking the MMS and citrus juice mixture.
Detoxifying Clay Baths. Added to bath water, these products claim to draw out chemical toxins, pollutants and heavy metals from the body, falsely offering “dramatic improvement” for autism symptoms.

CocoKefir probiotics products. Product claims include being a “major key” to recovery from autism, but they are not proven safe and effective for this advertised use.

Coody offers some quick tips to help you identify false or misleading claims.
Be suspicious of products that claim to treat a wide range of diseases.
Personal testimonials are no substitute for scientific evidence.
Few diseases or conditions can be treated quickly, so be suspicious of any therapy claimed as a “quick fix.”

So-called “miracle cures,” which claim scientific breakthroughs and secret ingredients, may be a hoax.

The bottom line is this—if it’s an unproven or little known treatment, talk to your health care professional before buying or using these products.
This article appears on FDA’s Consumer Updates page, which features the latest on all FDA-regulated products.

April 25, 2014

There are many groups in American where the autistics are under-diagnosed and underserved including many racial and ethnic minorities. A recent partnership (press release below) has been formed to address the issues of providing resources to the Korean American communities in the U.S..

We need more outreach such as this. More efforts to identify and serve all Americans with disabilities, including autism.

FOR IMMEDIATE RELEASE
THE KOREAN COMMUNITY SERVICES, AUTISM SPEAKS, THE UNIVERSITY OF PENNSYLVANIA AND THE GEORGE WASHINGTON UNIVERISTY PARTNER TO PROVIDE AUTISM RESOURCES TO KOREAN AMERICANS
Launch Autism Hotline for Concerned Families

FLUSHING, N.Y. (April 10, 2014) – The Korean Community Services of Metropolitan New York, Inc. (KCS), Autism Speaks, the world’s leading autism science and advocacy
organization, the Center for Mental Health Policy and Services Research at the Perelman School of Medicine at the University of Pennsylvania, and the George
Washington University, today announced the establishment of the KCS Kids’ Line. KCS Kids’ line is a hotline service that provides referrals, information, and support for families
in the Korean community who are concerned that their children may have an autism spectrum disorder (ASD).

KCS will hold a press conference today at 3:00 p.m. ET at the Korean Community Services of Metropolitan New York, 35-56 159th Street in Flushing, to introduce the new
KCS Kids’ Line program. In attendance will be New York State Assemblyman Ron Kim, the Community Advisory Board members of the Project and local early intervention
providers. A two-year study, the New York Korean City Community Autism Project, funded by Autism Speaks, identified many barriers to early detection and access to
services for Korean families of children with autism.

Kwang S. Kim, the President of KCS, said, “KCS Kids’ Line service aims to help family and caregivers promptly respond to development issues and autism-related signs they
find in their children and get them appropriate services as soon as possible. We learned that early intervention is very important for children with autism because it allows them
practice and learn social and communication skills so they could better adapt to the society. I would like to thank University of Pennsylvania and Autism Speaks for
supporting this project for Korean-American community and hope that this program will help a lot of Korean-American children and their families affected by autism.”

KCS Kids’ Line Service Overview
The Asian-American Federation Census Information Center reports that Koreans are the third largest Asian group in the New York City, with a current population of more
than 100,000. According to the NYC Department of Education, Asians comprise 16% of New York City students; among those diagnosed with autism only 8% are Asian. This
difference suggests substantial under-diagnosis of autism in the Korean community. A recent study on the prevalence of autism in South Korea found similar results, with twothirds
of those on the autism spectrum previously undiagnosed and receiving no specialized services.

Under-diagnosis of autism in the Korean community may be driven by lack of awareness, stigma, and lack of access to linguistically and culturally appropriate
services. Language is a significant barrier among Korean-Americans seeking services in New York.

The goals of the KCS Kids’ Line are to ensure Korean-American children with autism in the greater New York area receive timely and appropriate services, to provide better
support for parents and families of those on the spectrum, and to promote autism awareness and greater access to resources about ASD.

The KCS Kids’ Line will serve, but not be limited to, parents of children from birth to 3 years of age with concerns about autism or other developmental delays. These parents will be able to call, e-mail or walk in to receive information. Autism-specific toolkits and resources that have been translated into Korean will be available for parents at the
event and also online at Autism Speaks’ website: http://www.autismspeaks.org/korean. KCS will continue to build knowledge about autism and related services in the greater
New York City area and develop relationships with schools and community organizations to connect older children and their parents with resources they need.

KCS has partnered with Autism Speaks, the George Washington University and the University of Pennsylvania to prepare the KCS Kids’ Line service. Autism Speaks
supports KCS by sharing their toolkits and resources, providing KCS coordinators with relevant trainings, education, and guidance. George Washington University and the
University of Pennsylvania helped KCS base the structure and content of the call line on previous research findings, translated existing materials for families into Korean, and
provided general guidance on the implementation of the call line. The University of Pennsylvania will evaluate the Kids’ Line service to determine its effectiveness in
increasing the number of Korean children with suspected autism who are referred for evaluation and services.

About Autism
Autism is a general term used to describe a group of complex developmental brain disorders – autism spectrum disorders – caused by a combination of genes and
environmental influences. These disorders are characterized, in varying degrees, by communication difficulties, social and behavioral challenges, as well as repetitive behaviors. An estimated one in 68 children in the U.S. is on the autism spectrum.

About KCS
Korean Community Services of Metropolitan New York (KCS) was founded in 1973 as the first community-based service agency in the Korean community. KCS is a non-profit
organization supported by government agencies, foundations, corporations and concerned individuals. KCS serves primarily but not limited to the Asian-American
immigrant population within the greater New York area. KCS’ objectives are to develop and deliver a broad range of community services to meet the various needs of the
community. To achieve these objectives, KCS provides various professional community services within the areas of Aging, Community, Workforce Development, and Public Health.

About Autism Speaks
Autism Speaks is the world’s leading autism science and advocacy organization. It is dedicated to funding research into the causes, prevention, treatments and a cure for
autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families. Autism Speaks was founded in
February 2005 by Suzanne and Bob Wright, the grandparents of a child with autism. Mr. Wright is the former vice chairman of General Electric and chief executive officer of
NBC and NBC Universal. Since its inception, Autism Speaks has committed nearly $200 million to research and developing innovative resources for families. Each year
Walk Now for Autism Speaks events are held in more than 100 cities across North America. On the global front, Autism Speaks has established partnerships in more than
40 countries on five continents to foster international research, services and awareness. To learn more about Autism Speaks, please visit AutismSpeaks.org.