The Doug Flutie Foundation and UMass Lowell’s Disable the Label Week and Autism Awareness Month

(Originally posted for The Voice of Heard on March 25, 2012)

A few weeks ago, I spotted a curious article on the front page of The New Uxbridge Times during one of my shifts at Goretti’s Supermarket where I work. It discussed an Uxbridge resident who was selected to represent the Doug Flutie Foundation for Autism in this April’s Boston Marathon. I check out their website and learned that it was founded by Doug Flutie, a former NFL quarterback of the Buffalo Bills, in honor of his son, Doug Jr., who was diagnosed with autism, specifically Childhood Disintegration Disorder (CDD), at age three. Through that organization, he provides aid to financially struggling families in order to provide the support and resources they need to help relatives with autism. More details can be found in this link to the website.

Yesterday, I have also took notice to a few flyers autism-related programs supported by UMass Lowell while I was taking part in their study of autistic adults’ emotional responses to one-minute samples of music. One of those is their annual Disable the Label Week, which is held in the first week of April as part of UMass Lowell’s Autism Awareness Month. One of the events held that week on Tuesday is a performance by the Asperger’s Are Us comedy group comprised of four young men with Asperger’s Syndrome. Another event held on Wednesday during the Disable the Label Week is a free movie night show a movie titled Temple Grandin, a biopic of the autistic woman who is an expert in animal behavior who promoted humane treatment of animals in livestock handling facilities. More details can be found in this promotional flyer.

As an autistic man, I find these latest autism news updates to be really good since the Doug Flutie Foundation and UMass Lowell’s Disable the Label Week are both concerned with raising autism awareness and providing ways for autistic individuals and their families to improve the quality of their lives; I was especially glad to know that they are not portraying autism as a disease to be cured and affected individuals as “an infected population to be isolated and quarantined” as organizations like Autism Speaks would.

Autism Advocacy Groups: Businesses Specializing in Increasing Awareness of an “Autism Epidemic”

(Originally posted for The Voice of Heard on October 17, 2011)

If you have read my recent entries on the myths of autism, you’re probably wondering “why didn’t you debunk the myth that advocacy groups like Autism Speaks are helping people with autism and their families?” That was my intention a few weeks ago but I decided that trying to do just that would take a lot of space; more space, in fact, than the other myths I’ve gone over. So I decided that I would save that task for this entry. In the course of my research into autism advocacy groups, I just couldn’t help but ask: why do they portray autism as a disease that’s a burden on the families of the affected? What good would it do for those families to give the advocacy groups so much money in order to provide help to their autistic children? Where does all the money really go other than research for causes, treatments, preventions, and cures? These questions have to be taken into consideration as I go over three major autism advocacy groups, which I would refer to as the Big Three (for reasons I will express later on in this post).

1. Generation Rescue

Advertisments sponsored by Generation Rescue, like the one shown here, have been running in newspapers like USA Today.

Founded on May 24, 2005 by a wealthy financier named J.B. Handley along with his with, Lisa, this non-profit organization got its start by promoting chelation therapy and recruiting 100 parents of autistic children, known as “Rescue Angels,” to spread the word about the therapy as a miraculous cure of autism. What prompted them to do so was because they believed to have witnessed this so called miracle when they treated their autistic son, Jamie, with chelation therapy. Between the time since the organization’s foundation and January 2007, Generation Rescue entered the mainstream spotlight with an aggressive media campaign, part of which included sponsoring full page advertisements in major newspapers, mainly the New York Times and USA Today. In 2008, the Handlys produced Autism Yesterday, a documentary film claiming that autism is a reversible biomedical condition. Such media coverage had promoted the myth that autism is a form of mercury poisoning, largely from vaccination. The organization’s belief in the myth and the “miraculous power” of treatments like chelation therapy is evident in their original mission statement:

Generation Rescue is a non-profit organization founded by parents of mercury-poisoned children dedicated to providing other parents with the truth about the cause of their children’s neurological condition. We have united out of the shared bond, anguish, and outrage at discovering that our children have been mercury poisoned. Right now, thousands of parents armed with the truth are successfully healing their children. (Note: I tried to find this quote, which was featured in the book Autism’s False Profits, on the group’s website but I could not find it.  I assume it was taken off.)

While researching Generation Rescue on the website Neurodiversity.com, I noticed that how the “Rescue Angels” deal with autistic individuals was anything but angelic, as evident in an email sent to J.B. Handley to a mother of a child with Asperger’s Syndrome complaining about their behavior and attitude toward autistic individuals like the autistic blogger Autism Diva. It is also apparent that the group functions more like a religious sect than a group promoting scientific advocacy based on an email exchange with J.B. Handley and Kathleen Seidel, the creator of Neurodiversity.com. Today, Jenny McCarthy, a former Playboy model who became an autism advocate, currently acts as president of Generation Rescue.  Besides chelation therapy, Generation Rescue now promotes other biomedical treatments for autism, including diets free of glutin, casein, and soy; vitamin and mineral supplements, homeopathy, and other treatments said to heal the “leaky guts” of autistic children.

2. Autism Research Institute (ARI)

Dr. Bernard Rimland (second to right) stands in front of the Autism Research Institute (ARI) in San Diego,CA, which he founded in 1967 and was the director until his death in 2006.

Dr. Bernard Rimland (1928-2006), originally a research psychologist for the US Navy, established this organization in 1967 in San Diego, California because of his wariness of the slow pace of research on autism. Although he played a role in disproving the refrigerator mother theory of autism promoted by Bruno Bettelheim, he promoted a theory which turned out to be another myth: that autism was fundamentally a biological disorder that resulted from environmental factors and/or defective genes. Later in 1995, the ARI brought together a group of 30 scientists and physicians to exchange information and ideas about alternative solutions for treating autism in a conference which became known as Defeat Autism Now! (DAN). Known as DAN doctors, these practitioners offered alternative therapies to many parents who believe that the major medical establishment is lacking an immediate solution for their children’s autism. The DAN therapies, some of which are only performed by special laboratories working directly with DAN, consist of eliminating substances that could damage the children’s guts, re-inoculating them with healing bacteria, and repairing them with nutrients. Before these therapies could even begin, however, the autistic children in the DAN doctors’ care had to go through many daunting tests, including but not limited to blood tests, urine tests, and stool analyses. Such tests, like the therapies themselves, are widely diverse, highly expensive, and disproved by many members of the scientific and medical communities. They cost thousands and sometimes tens of thousands of dollars and are rarely, if ever, covered by medical insurance, forcing parents to pay for them out of their pockets and bank accounts. Many DAN doctors, 300 of which currently practice in the U.S. as of this writing, have been disciplined by medical boards across the country for their unethical and illegal practice of medicine and several of them had their medical licenses suspended or revoked because of it. Even more disturbing, the ARI only lists the names and locations of the DAN doctors and not the majority of doctors, physicians, and scientists who don’t find the tests and treatments promoted by DAN to be useful in autism research and practical use in the field of medicine. Regardless, the ARI still declares autism as a treatable disorder and the DAN conferences are still being held to this very day.

3. Autism Speaks

This walk held last year in Los Angeles, CA was one of the many walks held by Autism Speaks that raises funds for its programs.

This is the world’s largest and most influential autism advocacy organization, created five years ago by Robert and Suzanne Wright, wealthy grandparents of a child with autism and financially launched by a $25 million dollar donation from Bernie Marcus. Merging with three other autism organizations since its founding, Autism Speaks has acquired large amounts of money from donations and its walks for a cure. According to their 2010 annual report, they have received $50 million dollars from public support (which includes corporations, celebrities, and charities) and spent at least $2 million dollars in advertising. Examples of such donations are many; Toys “R” Us has donated over $1 million dollars; Bank of America contributed over $200,000; Robert and Suzanne Wright, the very people who started Autism Speaks, personally donated over $100,000 to their own organization; and Universal Studios donated at least $25,000. The majority of the funds accumulated by Autism Speaks go into research grants that “[fund] research into the causes, prevention, treatments, and a cure for autism.” The research sponsored by Autism Speaks mainly focus on detecting genetic and environmental factors, diagnosis, and ways of detecting signs of autism in embryos. There have been occasions when Autism Speaks got into conflict with the autism community. One of them took place in September 2009 when a controversial short video title “I Am Autism” was screened at a World Focus on Autism event held annually by Autism Speaks. A year earlier in January, an autistic blogger was forced to shut down his site which was a critical parody of Autism Speaks. Autism Speaks had threatened him with legal action for him to stop using its name and logo on his blog without their permission.

When I analyzed Generation Rescue, the Autism Research Institute, and Autism Speaks, I have found that all three autism advocacy organizations have plenty of things in common, which is the reason why I referred to them as the Big Three earlier. They are all 1) well-funded by the public; 2) represented by influential businessmen, physicians, celebrities; 3) they tend to portray autism as an epidemic that needs to be cured, 4) focus their funding on treatments, causes, and cures; and 5) not include any people with autism to represent them or even include them in their discussions. On the surface, these major autism advocacy groups appear to have good intentions in regards to helping many families affected by autism. When examined closely, however, they are more like businesses specializing in increasing awareness of an autism “epidemic” while making money off of parents’ concerns for the well-being of their children with autism. Many people may not be aware of this, but there are many autistic individuals who are actively speaking out against groups like Autism Speaks for focusing more on searching for a cure for autism than on finding ways to improve the lives of autistic people so they can function independently in society. I will be covering such individuals in a later post. If you wish to validate my information about the Big Three, I recommend reading the book Autism’s False Prophets as a start. I also suggest you take a look at their websites so you can see the point I am trying to get across here and also research them using Neurodiversity.com for additional information.

Original Comments

AutismNewsBeat
October 19th, 2011 at 2:50 pm

“Generation Rescue is a non-profit organization founded by parents of mercury-poisoned children dedicated to providing other parents with the truth about the cause of their children’s neurological condition,” etc.
There is a huge split in the anti-vaccine community over the role of thimerosal in autism. Not whether mercury causes the disorder – that’s a given among these groups – but whether all autism is caused by mercury. Handley has backed off his original position that all autism is mercury poisoning. The myth can be traced to a 2000 article in Medical Hypothesis called “Autism: A Novel Form of Mercury Poisoning.” I wrote about the “study” here:
http://autism-news-beat.com/archives/27
Thanks!

Itzel
March 24th, 2012 at 8:30 am

Actually, chelation is being used to treat more than the rrucmey the thought is that our kids can’t get rid of many of the heavy metals to which they are exposed. This includes lead, molybdenum, arsenic, copper, etc. Most people can stand some exposure to these things and filter them through their bodies, but a lot of these kids can’t.Every child I know except 1 who has done chelation with a knowledgeable and cautious M.D. has seen enormous success. If done properly, and preceeded by dietary changes and getting the body as healthy as possible, it’s amazing what can happen.

Rahul
May 10th, 2012 at 7:19 pm

before and will say again) do I think there is anything about my son that needs “cured!” Does he need help to fuotnicn in life? Yes! Do I need to teach him and educate him? Yes! Do I think he is somehow flawed? No!!

Autism: Being Aware of...What Exactly?

Autism. A developmental disorder that affects that person's ability to communicate and socialize with other people, which he or she finds difficult, and also causes the person to think in literal and concrete terms, have limited to no control over their body movements, sometimes find comfort in rigid routines, and engage in stereotypical behaviors, such as flapping arms, hitting an object over and over again, and talking to him/herself; in short, autism affects the person's ability to function in society, depending on the spectrum. The spectrum, or severity of the disorder, ranges from mild to severe. For those with mild forms of autism, they are able to assimilate in society via family, friends, school, and the workforce. In more severe cases, an autistic person is unable speak and express him/herself, is extremely sensitive to light, sounds, and crowds, and has behavior problems that result in self-injury, consisting of, for instance, head banging and hair pulling.

Ever since Leo Kanner discovered it in 1943, many people have been unsure as to what to make of autism and how to deal with it. Numerous studies in science, medicine, and social psychology have been conducted to examine how autism has been occurring and look for ways to deal with it. At one point, it was believed that children develop autism as a sort of coping mechanism due to a lack of emotional attachment to cold uncaring mothers, a theory which has since been debunked. Some people believed, and still believe, that autism was a side effect of a mercury-based preservative found in vaccines, an emotion-fueled dogma that has been consistently debunked by the medical community. There is now growing evidence that autism is rooted in genetic factors. Yet with all the progress being made in the science of autism, there is still a debate as to what can be done to improve the lives and well being of autistic people. For example, there is some confusion in the use of the terms "autistic person" and "a person with autism." An autistic person is someone who is born with autism. When someone is referred to as "a person with autism," it implies that autism is something that can be removed like a splinter embedded in skin; an emotional shell that protects a "healthy and normal" human being that needs to be cracked; and an inhibiting disease that needs to be cured. Of course, that may be a minor thing. But such simple terms are just the tip of the iceberg. In many attempts to raise awareness of autism among the general public, the information that comes from research studies and parent-led advocacy groups and gets transmitted and filtered by the mass media, consisting of newspapers, magazines, radio broadcasts, television, movies, books, etc., has been affecting, for better or worse, how autistic people are looked upon in society. The debate has also been affecting, both directly and indirectly, the quality of life autistic people lead as children and adults, the opportunities in employment and education being made available to them, and how their dignity as human beings gets defined in mainstream society. In short, autism awareness as it is now has been, for all intents and purposes, a problem that leads to inaccurate myths about autism, eight of which I have personally debunked a few years ago. In order to demonstrate a basic understanding of this problem, I will briefly go over a few key components of the mass media that affects how society perceives autistic people: movies and images accompanying news stories. In movies featuring autistic characters like Rain Man, Mercury Rising, and Mozart and the Whale, autistic people get depicted as having limited to no emotion and possessing either extraordinary (almost supernatural) abilities such as pattern-recognition, perfect memory, and complex mathematics (leading to the savant stereotype) or diminished intellectual capacity. When images are featured with news stories about autism, they tend to portray autistic children as fragmented and imprisoned by the disorder. The words 'fragmented,' 'imprisoned,' and 'disorder' are just a few of the many key words that are part of the problem of raising awareness of autism.

When it comes to even talking about autism, the developmental disorder is often spoken of as one that diminishes the quality of the person born with it as a human being, a belief that some people are striving to debunk by not even calling autism a disability. Words, besides the ones I just referred to, that reinforce this notion include 'deficit,' 'impaired,' 'retarded,' 'devastating,' 'destructive,' 'puzzle,' 'illness,' 'epidemic,' 'broken,' 'restricted,' and 'limited,' among others. When talking about autism in this context, it is like saying "be aware that [so-and-so] has autism, so he/she might end up destroying something;" or "be aware that it may not be easy to talk to this person since he/she has autism;" or "be aware that he/she may get into a temper tantrum if you [insert any action here] because of his/her autism;" or "be aware that he/she may get upset over something you say that you usually find funny or friendly." According to Lydia Brown, an autistic rights activist, society tends to use "disability" as a sort of social and cultural antibody, a means to label, ostracize, and alienate anyone who does not behave, act, think, communicate, and socialize in the same manner as everyone else.

In conclusion, raising awareness of autism is not enough and is doing little to help autistic people of all ages have a better life, even as more research studies are being conducted to better understand the developmental disorder, which is a good thing. As an autistic man, I call for drastic changes in how the public becomes more aware of autism, understands it, and deals with it. The first step would be to change "Autism Awareness Month" to "Autism Acceptance Month." The second step would be to find ways in which children diagnosed with autism receive the best education and social communication training possible. The third step would be to support autistic people as they make transitions to a productive and independent life. It may have been too late to do the first step last month. But with enough public support, we as a society could change the way in which autism is discussed and accept autistic people without labeling, ostracizing, and alienating them by granting them the right which most people in this country take for granted: the right to lead better and more independent lives.