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Autism Speaks misleads the public on the IACC’s stance on vaccine research

12 Nov

Autism Speaks recently announced that the Interagency Autism Coordinating Committee (IACC) included vaccine research studies into the objectives of the Strategic Plan. I’m sure many people who read their press release are thinking that the vaccine-autism research will definitely be funded. But, is this accurate? The answer is no.

According to the press release and the Autism Speaks website:

Autism Speaks is encouraged by yesterday’s decision of the Interagency Autism Coordinating Committee (IACC) to include vaccine research studies in the objectives of the updated Strategic Plan for Autism Research. The new language, approved unanimously, calls for studies to determine if there are sub-populations that are more susceptible to environmental exposures such as immune challenges related to naturally occurring infections, vaccines or underlying immune problems. “This revised plan is an important step toward a more comprehensive approach to exploring the wide range of risk factors that may be contributing to autism,” said Geraldine Dawson, Ph.D., Autism Speaks chief science officer.

I’ve already noted that the statement Autism Speaks gave before the IACC was incorrect. Vaccine research was not a “clear directive” of the Combating Autism Act. You can check for yourself.

Alison Singer of the Autism Science Foundation, and member of the IACC, has a statement on the ASF blog, Autism Science Foundation Agrees with Decision to Keep Vaccine Research Out of the IACC Autism Plan.

The ASF blog notes:

Autism Science Foundation President and Interagency Autism Coordinating Committee member Alison Singer joined her colleagues on the IACC in voting to eliminate references in the autism strategic plan that could imply that vaccines cause autism or that call for additional vaccine research. “Draft materials submitted to the IACC suggesting vaccines and/or vaccine components were implicated in autism were rejected by the committee because the IACC determined that they were not based on good science,” said Singer. In addition, the two research objectives proposed that specifically called for additional vaccine research were not approved.

Also:

Singer added that some groups seem to be misinterpreting the inclusion of the word “vaccines” in the list of examples of immune challenges as a mandate for vaccine research, and have issued misleading statements. “Based on the votes taken yesterday, the IACC was clear in its position about autism and vaccines. But if there is public confusion about this new research objective then I will try to make sure we clarify it at our next meeting,” Singer said. The IACC will continue its work on the plan at a meeting on December 11, 2009 with the goal of finalizing the revised plan by January, 2010.

The entire statement can be read on the Autism Science Foundation’s blog.

It appears that Autism Speaks is placing a fairly major spin on a single action taken by the IACC. Again from the ASF blog:

The IACC also voted unanimously to add a new objective to study whether or not there are certain subpopulations that are more susceptible to environmental exposures such as immune challenges (including naturally occurring infection, vaccines, and/or immune disorders).

Compare that to the Autism Speaks announcement:

IACC Includes Vaccine Research Objective In Strategic Plan For Autism Research
Autism Speaks is Encouraged by New Language Recommending Funding of Vaccine Research

Or, worse yet, the first line of their press release: “Autism Speaks is encouraged by yesterday’s decision of the Interagency Autism Coordinating Committee (IACC) to include vaccine research studies in the objectives of the updated Strategic Plan for Autism Research”

As I noted above, I am very confident that many people reading the announcement are expecting autism-vaccine research to be funded.

But this isn’t a “vaccine research objective”. This isn’t calling for “vaccine research studies”.

What it is, is an objective that mentions vaccines. It is a very important distinction. Take a close look, the objective does not call specifically for a vaccine project to be funded. It doesn’t even call for immune challenges to be funded. These are just listed as possible examples.

This is a small example of why the IACC needs to be very careful in how and if they discuss vaccines. Groups such as Autism Speaks can act incredibly irresponsibly in spinning any statement including the word vaccines.

Autism Speaks pushes the “legislative history” myth about the Combating Autism Act

11 Nov

Autism Speaks has announced (possibly incorrectly) that the IACC (Interagency Autism Coordinating Committee) has included vaccine language in the Strategic Plan.

Autism Speaks has posted their statement on their website.

Here is the statement (from their press release):

In enacting the Combating Autism Act (CAA), Congress intended that the federal government examine potential links between vaccines and autism. During the Senate debate over the CAA, Mike Enzi, Chairman of the Senate Health, Education, Labor & Pensions Committee, instructed that “no research avenue should be eliminated, including biomedical research examining potential links between vaccines, vaccine components, and autism spectrum disorder.” 152 Cong. Rec. S8772 (Aug. 3, 2006). In the House, Joe Barton, Chairman of the House Energy and Commerce Committee, was equally clear: “[T]he legislation rightfully calls for renewed efforts to study all possible causes of autism – including vaccines and other environmental causes… The important thing to understand is that there are no preconceived notions contained in this bill; the bill language is clear that we should follow every avenue that science opens to us in searching for a cure.” 152 Cong. Rec. H8787 (Dec. 6, 2006)

Beyond this clear directive of the CAA, Autism Speaks supports rigorous, evidence-based scientific research onto all aspects of autism from potential causes, including both genetic and environmental factors, to diagnosis and treatments. As such, we strongly urge that further vaccine safety research be included in the Strategic Plan for Autism Spectrum Disorder Research. Comprehensive “good” science should be the standard in all areas studied and there are aspects of vaccine safety research that have not yet been, and should be, considered.

It is also essential that all scientific research recommended by IACC and funded by the NIH be rigorous and evidence-based to engender the trust of the scientific, medical and entire autism community. Without a solid foundation that supports confidence in scientific conclusion, the entire portfolio of scientific research is at risk of losing community trust. Further, vaccine safety research will increase both the level of confidence in the safety of our nation’s vaccine program and the rate of participation, which is absolutely crucial for the prevention of serious infectious diseases.

Autism Speaks calls on the IACC to consider the importance of evidence-based science, trust, and to remain true to the critical legislative purpose of the Combating Autism Act and asks the IACC to include vaccine safety research in the strategic plan.

The statement that vaccine research is a “clear directive of the CAA” is, simply, false.

The CAA (Combating Autism Act) does not include the statements by congressman Barton and Senator Enzi are part of the congressional record. They are statements made by the individual legislators.

They are not a part of the Combating Autism Act, much less a clear directive of the Act.

Time Magazine picks up “I am Autism” protests

7 Nov

Time magazine has an article online today, ‘I Am Autism’: An Advocacy Video Sparks Protest. The article notes the protests staged in response to the I Am Autism video. (I have made my own position clear on the video Autism Speaks media campaign…I am autism, Why I don’t like “I am Autism”, I am autism video removed from Autism Speaks’ website…or is it?, The Autism Speaks bait and switch with I am Autism, and ASAN’s Letter in Response to Autism Speaks’ Exploitative Practices.)

Time starts out with the controversies in the autism communities:

Few medical conditions rival autism as a magnet for controversy. Practically everything about the disorder — its cause, its treatment, the way it is diagnosed, how it is studied — is subject to bitter dispute, sometimes to the point of death threats.

Time has comments from the Autistic Self Advocacy Network’s Ari Ne’eman.

Some autistic “self advocates” are furious over the tone of the video. “We don’t want to be portrayed as burdens or objects of fear and pity,” insists Ari Ne’eman, president of the Autistic Self-Advocacy Network, a 15-chapter group he built while attending college at the University of Maryland, Baltimore County. “Apparently, should my parents divorce, it’s all my fault,” says Ne’eman, who received a diagnosis of Asperger’s syndrome, a relatively mild form of autism, at age 12.

Also, they quote Peter Bell of Autism Speaks:

“I Am Autism,” which turns hopeful about halfway through its 3 minutes and 44 seconds, was created for a World Focus on Autism event that coincided with the opening of the U.N. General Assembly in September. “It was never intended to have a life beyond that event,” Bell said.

Bell admitted that Autism Speaks does not have any individuals with autism currently serving on its board. “We are looking at adding individuals with autism to various advisory committees,” he said. The group is also initiating a better outreach to adults with autism.

I would welcome (to put it mildly) Autism Speaks getting some autistic representation in their organization. I think “advisory committees” sounds a bit weaker than the sort of representation I’d want to see, but it is a start.

As an aside, can someone explain this part of the article to me?

He notes that other disability groups have moved away from using fear and pity in their media campaigns. (See the best and worst Super Bowl commercials of 2009.)

OK…I’ll grant you that Super Bowl Commercials are not big on Pity and Fear, but it just doesn’t seem to fit the story.

Time has linked to protest videos “I am socks” and “I am Autism Speaks”

ASAN’s Letter in Response to Autism Speaks’ Exploitative Practices

2 Oct

The Autistic Self Advocacy Network is gathering support from multiple disability groups to protest recent actions by Autism Speaks.

Blogged at LBnuke and Autistic Self Advocacy Network, SW Ohio

ASAN is calling for more organizations to sign the joint letter:

The Autistic Self Advocacy Network and other organizations representing the Cross-Disability Community are distributing this joint letter to the sponsors, donors and supporters of Autism Speaks following the organization’s latest offensive and damaging Public Service Announcement, “I am Autism“. If you are an organization that would like to sign on to the letter, please e-mail ASAN at info@autisticadvocacy.org before Close of Business Tuesday, October 6th, 2009. If you are an individual who would like to join ASAN’s upcoming protests of Autism Speaks in Ohio, New England, New York City and elsewhere across the country please e-mail ASAN at info@autisticadvocacy.org Thank you for your support and please feel free to distribute for additional signatories.

And here is the letter:

To the Sponsors, Donors and Supporters of Autism Speaks:

We, the undersigned organizations representing self advocates, parents, professionals and allies in the Autism, Autistic and Disability Communities, are writing to you to express our concern about the recent actions of Autism Speaks. Our work is about helping empower and support people with disabilities of all kinds, including adults and youth on the autism spectrum, and we recognize that there are a wide variety of means towards accomplishing this goal. Yet, Autism Speaks’ recent choice to use fear, stigma, misinformation and prejudice against Autistic people as a fundraising tool does real damage to people with disabilities everywhere. The most recent example of this lack of ethics can be found in Autism Speaks’ new “I am Autism” campaign which states, “I am autism…I know where you live…I work faster than pediatric AIDS, cancer and diabetes combined. And if you’re happily married, I will make sure that your marriage fails. Your money will fall into my hands and I will bankrupt you for my own self-gain…I will make it virtually impossible for your family to easily attend a temple, birthday party, or public park without a struggle, without embarrassment, without pain…I am autism. I have no interest in right or wrong. I derive great pleasure out of your loneliness.”

Not only does this campaign rely on offensive stereotypes and inaccurate information (research indicates that parents of Autistic children are not more likely to divorce than parents of non-Autistic children), but it also does real damage to the cause of disability rights. By choosing to portray Autistic people as husks of real people, stolen out of our own bodies, Autism Speaks reinforces stereotypes and prejudice against people with disabilities that have existed for centuries and have been the source of pain, segregation and violence.

We are calling on you to end your support for Autism Speaks and to find new ways to show your support for Autistic people and others with disabilities. As the result of a pattern of unethical behavior and irresponsible governance, outlined below, we believe that Autism Speaks as an organization no longer deserves your time, energy, money and support.

Autism Speaks uses damaging and offensive fundraising tactics which rely on fear, stereotypes and devaluing the lives of people on the autism spectrum: Autism Speaks’ unethical fundraising tactics are not limited to the new “I am Autism” video. Its television Public Service Announcements compare having a child on the autism spectrum to having a child caught in a fatal car accident or struck by lightning. In fact, the idea of autism as a fate worse than death is a frequent theme in their fundraising and awareness efforts, going back to their “Autism Every Day” film in 2005. Indeed, throughout Autism Speaks’ fundraising is a consistent and unfortunate theme of fear, pity and prejudice, presenting Autistic adults and children not as full human beings but as burdens on society that must be eliminated as soon as possible.

Very little money donated to Autism Speaks goes toward helping Autistic people and families: According to their 2008 annual report, only 4% of Autism Speaks’ budget goes towards the “Family Service” grants that are the organization’s means of funding services. Given the huge sums of money Autism Speaks raises from local communities as compared to the miniscule sums it gives back, it is not an exaggeration to say that Autism Speaks is a tremendous drain on the ability of communities to fund autism service-provision and education initiatives Furthermore, while the bulk of Autism Speaks’ budget (65%) goes toward genetic and biomedical research, only a small minority of Autism Speaks’ research budget goes towards research oriented around improving services, supports, treatments and educational methodologies, with most funding going towards basic research oriented around causation and genetic research, including the prospect of prenatal testing. Although Autism Speaks has not prioritized services with a practical impact for families and individuals in its budget, its rates of executive pay are the highest in the autism world, with annual salaries as high as $600,000 a year.

Autism Speaks excludes the people it pretends to represent: Autism Speaks is one of an increasingly few number of major disability advocacy organizations that refuse to include any individual with the disability they purport to serve on their board of directors or at any point in their leadership and decision-making processes. In large part due to Autism Speaks’ public relations strategy of presenting Autistic people as silent burdens on society rather than human beings with thoughts, feelings and opinions, Autism Speaks’ governance policies are deeply unrepresentative and out of step with the mainstream of the disability non-profit community.

Contrary to the “I am Autism” video, which equates autism with AIDS and Cancer, autism is not a terminal disease. It is a disability, one that comes with significant challenges in a wide variety of realms. Yet the answer to those challenges is not to create a world in which people are afraid of people on the autism spectrum. The answer is not to create a world in which the word autism is met with terror, hatred and prejudice. It is to work to create a society that recognizes the civil rights of Autistic people and others with disabilities. It is to work to create a world in which people with disabilities can benefit from the supports, the services and the educational tools necessary to empower them to be full citizens in society.

We are Autism’s true voice – Autistic people and those with other disabilities ourselves, and our allies, family members, friends and supporters. Autism Speaks does not speak for us. We are not stolen – we are right here. Our lives may be difficult – but they are worth living. Autism Speaks Does Not Speak For Us and we will not work with an organization that relies on damaging and offensive stereotypes to advance an agenda out of step with those they purport to represent. We call upon you to recognize this and find better avenues for your admirable desire to support Autistic people and our families. We call upon you to end your support for Autism Speaks.

Regards,

National:

The Autistic Self Advocacy Network
Self-Advocates Becoming Empowered (SABE)
The National Council on Independent Living (NCIL)
ADAPT
TASH
Disability Rights and Education Defense Fund
The National Youth Leadership Network (NYLN)
Autism Network International (ANI)
Little People of America (LPA)

Not Dead Yet
The Bazelon Center for Mental Health Law

Autistic Spectrum Partnership In Research and Education (AASPIRE)
Mothers From Hell 2

International:
Autistic Self-Advocacy Network-Australia
Autism Rights Group Highland (in Scotland, United Kingdom)
The Autistic Community of Israel
Autreach IT in the United Kingdom
The Southwest Autistic Rights Movement (SWARM) in the United Kingdom

Local and Regional:
ADAPT-Montana
The Center for Disability Rights in Rochester, NY
The Regional Center for Independent Living in Rochester, NY
The Michigan Disability Rights Coalition
The Institute for Disability Access in Austin, Texas
The Maryland Coalition for Inclusive Education
The Paraquad Center for Independent Living in St. Louis, Missouri
The Lonesome Doves in Pennsylvania
TASH-New England
Together Enhancing Autism Awareness in Mississippi (TEAAM)
Wesleyan Students for Disability Rights at Wesleyan University in Connecticut
Tangram in Indianapolis, Indiana

—
Ari Ne’eman
President
The Autistic Self Advocacy Network
http://www.autisticadvocacy.org
info@autisticadvocacy.org
732.763.5530

I am autism video removed from Autism Speaks’ website…or is it?

28 Sep

I am not fond of the Autism Speaks video, “I am Autism”. I think I’ve made that clear.

I was heartened to hear that Autism Speaks had removed it from their website. That moment was short lived.

Over at Whose Planet Is It Anyway?, abfh has noted that Autism Speaks has posted an email that has been sent out to a number of people who complained about the video:

Dear [name],

Thank you very much for sending me your letter and telling me about your perspective and feelings regarding the “I Am Autism” video. I understand and respect your perspective and I am truly sorry that the film offended you. The video was not intended to reflect Autism Speaks broader viewpoint or attitude toward persons with autism spectrum disorder. Rather, it was created by two fathers of children with autism – Billy Mann, a Grammy-nominated songwriter, music producer and Autism Speaks board member, and Alfonso Cuarón, an Academy award-nominated film director. It is based on a personal poem written by Mr. Mann. It is an intensely personal expression by these two fathers. It was their hope that the piece would inspire other voices and artists in the autism community. It has greatly offended some people, however, and we have removed it from our website.

Again, thank you for writing to me and sharing your thoughts. You can rest assured that I will continue to advocate for a respectful and compassionate attitude and support for persons with autism spectrum disorder.

Sincerely,

Geri Dawson

But, as abfh notes, the video is still on the Autism Speaks website.

If you want further reading–here are the sites from the first page of a google search for “I am autism”.

Asperger Square 8

I Speak of Dreams


Protesting Autism Speaks “I am Autism” Video | Facebook

THE NEW REPUBLIC: I Am Autism Speaks

I am Autism Controversial Video Disability Videos

I Am Autism Speaks

There is a page witha blog post that has a similar sentiment to the Autism Speaks video, but that predates the Autism Speaks video by quite some time.

I Speak of Dreams has a running list of blog posts about this.

(note, some minor corrections were made after this was published)

Why I don’t like “I am autism”

25 Sep

When the Autism Speaks “I am autism” video came out, I really didn’t like it. It was on such a primal level that I couldn’t put words to how much or why I found it offensive.

One problem with leaving my reasoning unsaid is that many people reach the wrong conclusions. I have read here and elsewhere complaints that people like myself who criticize “I am autism” don’t understand that it is about the most challenged (low functioning) autistics.

I would say that anyone who thinks “I am autism” is about the challenges of autistics (“high functioning” or “low functioning”) didn’t pay close attention to the video.

Here it is again. (and here is a transcript)

Of course, some people understood where I was coming from. Fellow parent, Monica, wrote in the comments:

My voice isn’t the one that matters when it comes to autism. It really does take an idiot not to get that. I think a lot of my role as a parent is shutting up and listening. Until I am able to be quiet long enough that I can understand what they are wanting/needing I have no business being anyone’s voice. That’s a lesson that Autism Speaks obviously hasn’t learned.

It has been said that most stories have three main elements: a villain, a victim and a hero. “I am autism” certainly uses this three-pronged plot device. Let’s take a look:

The Villain: Autism

Autism Speaks very clearly has cast “autism” as the villain. Autism has no morality. Autism doesn’t know right or wrong. Autism wants to steal our children and our dreams.

Autism is some sort of science fiction monster or demon who stalks our children.

The victims: Parents

Watch the video and ask: Who is affected by autism? If all we had was the video to go by, the answer would be simple: Parents. Autism takes money away from…parents. Autism ruins the marriages of…parents. When a child has a meltdown in a public place, a park or temple or birthday party, it is the parents who are embarrassed. The death of a parent is important in the fact that the parent dies worrying about who will take care of their child or children.

The heroes: Parents

Yes, the parents are cast in two roles, victims and heroes. OK, not just parents. Grandparents, brothers and sisters are also heroes. Teachers, therapists, pediatricians and scientists get supporting roles as heroes as well. They are a community of warriors.

OK, that’s what I don’t like. If I were to make an appeal for funding (which is what I assume “I am autism” is for Autism Speaks), how would I frame it? What would I change?

First, autistics were given no voices in this video. It is all people speaking for autistics. Leaving autistics out is wrong on so many levels. Many, many levels. I could write the entire blog post on that one topic, and still have people pointing out things I missed.

Second, they still pose the discussion as primarily about children. There is at least one adult shown in the videos, but by far most of the video and voiceover is about children. Autism Speaks claims that there are 1.5 million autistics in the U.S. Perhaps it is time they acknowledged the 1.0 million adults and not just the half million children.

Third, I don’t like the victim device. No, I am not saying that autistics don’t face challenges, or that the challenges some face are very, very great. I am not in denial of that. I just don’t like victimizing the people you are purporting to help. It is paternalistic and it is counterproductive to many of the goals that are very important, like trying to help people live as independent a life as possible.

Which brings us to the fourth point:

Fourth, with apologies to my fellow parents, but the autistics really are the heroes. There are kids working harder in kindergarten than some people work in grad school. There are adults working harder just to get through the day than I do at work. If we are supposed to pity the parent who is embarrassed by their child in the park, how about some compassion for the child (or adult) undergoing the meltdown? We are supposed to feel the pain of the parent who wakes up crying wondering about “who will take care of my child after I die”. How about the autistic who will spend most of his/her life without a parent caregiver?

Who, really, is the hero? When will Autism Speaks get it that it is time to stop patting themselves on their own backs and start acknowledging the accomplishments of their children and the many autistics in the world. Autism Speaks could go a long way towards that by integrating their own organization with the very people they purport to represent: autistics. Get some autistics into Autism Speaks and start listening.

The Autism Speaks bait and switch with I am Autism

23 Sep

Autism Speaks’ recently debuted their new “I am Autism” video.

Here is Suzanne Wright’s appeal for parents to donate video footage for this event:

“We will all help shine a bright spotlight on autism.”

I find the final video to be far from “shining a bright light on autism”.

I am so glad I didn’t trust Autism Speaks with video of my child.

Autism Speaks media campaign…I am autism

23 Sep

Shades of the disasterous NYU Ransom notes campaign:

They make autism into a being with a voice who says:

“…and with every voice I take away, I acquire yet another language”

“…and if you are happily married, I will make sure that your marriage fails”

“…your money will fall into my hands and I will bankrupt you for my own self gain”

“…I will make it virtually impossible for your family to attend a temple, birthday party, a public park without a struggle, without embarrassment, without pain”

Not convinced it is like the ransom notes campaign?

“…I will plot to rob you of your children and your dreams.”

The rest of video is scripted from the perspective of parents, family, friends….pretty much everyone except for autistics, with phrases like:

“When you came for my child you forgot. You came for me.”

I am totally speechless aside from one word for Autism Speaks: why?

edited to add: here is the Autism Speaks announcement.

Autism Speaks softens message on vaccines?

24 Aug

That is the message of a recent article by Mark Roth, Autism group softens stance on vaccines .

Autism Speaks, the nation’s largest autism advocacy group, recently made its clearest public statement yet that minimizes the link between vaccines and autism.

Mr. Roth discussed a recent statement from the Autism Speaks website by Dr. Gerri Dawson, Autism Speaks’ chief science officer. He quoted Dr. Dawson as stating:

“So … given what the scientific literature tells us today,” she says, “there is no evidence that thimerosal or the MMR vaccine cause autism” and “evidence does not support the theory that vaccines are causing an autism epidemic.”

It has been, well, interesting watching the reaction to Autism Speaks in the past few years. As recently as two years ago, the vaccines-cause-autism organizations were highly critical of Autism Speaks for ignoring the vaccine question. In fact, it seems like just this year that Autism Speaks “outed” itself as supporting the vaccines-cause-autism idea. This occurred when Alison Singer was forced to resign from Autism Speaks since she wouldn’t vote for vaccine-causation research in the IACC.

From my perspective, this “softened” stance by Autism Speaks is still a stronger message than they were sending a year ago.

This all begs the question: why did Autism Speaks soften their message?

I can speculate (and that is all this is, speculation). First, the vaccine question is highly charged. My guess is that Autism Speaks put off making a definite statement as long as possible. When Alison Singer resigned over her vote in the IACC (voting to remove vaccine research from the funded projects), Autism Speaks was forced to make their views public.

The departure of two key people, Alison Singer and Eric London over the vaccine question was not good publicity for Autism Speaks. Much more, the creation of the Autism Science Foundation gives potential donors a second viable option for an autism research charity that doesn’t fund vaccine-causation research (the first being the Simons Foundation).

What is odd about Dr. Dawson’s comments is this: If there is no evidence that thimerosal causes autism, why does Autism Speaks fund thimerosal research? Here are grants from 2008:

Differential Effects of Thimerosal on Cell Division and Apoptosis in Normal vs Autism Spectrum Disorder Cell Lines ($60,000 for one year)

and

Vulnerability phenotypes and susceptibility to environmental toxicants: from organism to mechanism ($330,000 over 3 years)

Specifically, thimerosal and other vaccine adjuvants will be studied.

(sidenote: Thimerosal isn’t an “adjuvant”)

and

Analysis of developmental interactions between Reelin haploinsufficiency, male sex, and mercury exposure ($324,340 over 3 years)

and

Etiology of Autism Risk Involving MET Gene and the Environment ($659,100 over 3 years)

The next line of experiments will examine the relationship in an even larger sample, and assess the functional effect of the MET gene polymorphism on immune cell activity, and to further examine the impact of environmental toxins (including ethyl mercury) on the gene expression-dependent function of maternal immune cells.

Is Autism Speaks softening their “message” or softening their “stance” on whether vaccines and/or mercury cause autism?

Call congress to support autism insurance

9 Jul

Autism Speaks has been working in many states to institute insurance parity for autism. “Parity” means that therapies to treat autism must be given on the same level as other medical conditions.

One big loophole in this is that many insurance programs do not fall under state law. In the US, most people who have medical insurance get it through their employer. Generally, we all think that our employer buys a policy for us from some carrier like Blue Cross or Kaiser. But, what if the employer acts as the insurer? I.e. what if your company pays your medical bills? Well, one thing is that your company is not bound to follow state laws.

So, say you live in a state that has a parity law requiring that autism be covered, what then? Since the federal government doesn’t have insurance parity, you and your family don’t benefit from your state’s law.

You have to imagine this is one reason why companies self-insure.

That aside, Autism Speaks is heading a campaign to get the federal government to pass legislation to end “discrimination” in insurance coverage. They are asking people to call legislative leaders: house speaker Nancy Pelosi (contact info) and Senate Majority Leader Reid (contact info).

Up to this point I think this is very good. I would encourage people to contact these leaders, as well as your own congressperson and senators.

However, the TV ad really bugs me. Take a look and form your own opinion:

To people in the autism community, I think the message is clear. Insurance means funding ABA to make a kid normal. The kid with insurance gets to play with other kids, the kid without insurance is left sitting on his own.

I am not anti-ABA, but I really don’t like that message.

I also am not wrong in my interpretation. From Autism Speaks’ site “autism votes”

“Neighbors” depicts two young boys who are next door neighbors – one, whose insurance has given him access to autism therapies is shown playing with other kids; the other, who has been deprived of access to therapies, sits alone on his lawn, socially isolated. The TV spot ends with a call to action, urging the American public to call United States Senate Majority Leader Harry Reid (D-NV) and House Speaker Nancy Pelosi (D-CA) to tell them that any national health care reform plan that does not include autism insurance reform is unacceptable.

Fourteen states have already acted to amend insurance laws and require insurers to cover medically-necessary, evidence-based autism therapies. In the other 36 states, insurers explicitly exclude coverage of these behavioral therapies from policies, which places a significant financial burden on families seeking to provide their children with necessary services. Applied behavior analysis therapy (ABA), recognized as an effective, evidence-based treatment for children with autism, costs upward of $50,000 a year – a cost well beyond the means of most American families. A federal law would supersede state laws and require all insurers to cover ABA.

Again, I am not anti-ABA. I am against using ABA in an effort to make an autistic person (child or not) “normal”. Since this subject seems to come up in discussions of ABA, I will also make it clear that I don’t think any therapy should be mandated for autism. Mandating ABA is not the intent of this initiative, from what I can see.

Don’t let Autism Speaks or the commercial stop you if you support insurance parity for autism. It is a good cause.

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