Wrong Planet

Although (as far as I know) Michael John Carley of GRASP and Alison Tepper Singer of Autism Speaks are not literally in bed together, they have had such a cozy relationship over the past two years that the expression seems quite apropos. Most of us know Singer from her appearance in the Autism Every Day film, in which she attained worldwide infamy (and, if I recall correctly, a visit from child protective services) for saying, in front of her autistic daughter, that she had fantasized about driving off the George Washington Bridge with her daughter in the car.

Carley's sordid history of kissing up to Autism Speaks began in 2006 when he and Singer wrote so-called articles of understanding, in which Singer argued in favor of Autism Speaks' cure and prevention research by claiming that her daughter "does not have any areas of strengths that I fear squashing through medication, intervention or cure," and Carley slavishly bleated that autistic adults should be more understanding of the suffering of such parents.

Read on for the details and links.

Autism’s False Prophets: Bad Medicine, Risky Medicine, and the Search for a Cure is a well-referenced, historical work that explains the dangerous and unnecessary controversies that have put the lives of autistic children at risk. Offit sets up his book by explaining how he has become a major player in the field of immunology. He then explores the process by which the autism/vaccine controversy has been given so much attention. He describes how parents and physicians worked together to create treatments that when put under scientific scrutiny, have no real efficacy.

Offit sets the tone of the book by showing how secretin therapy and facilitated communication were exposed as scams. He then debunks Dr. Wakefield’s study of the MMR vaccine and employs the scientific method to show how thimerosal and other mercury-based theories have no relevance.

Read on for more about the book and a video with author Dr. Paul Offit!

Recently, the organization People for the Ethical Treatment of Animals (PETA) launched a new ad campaign entitled, "Got Autism?", misleadingly implying that the consumption of milk is associated with the cause of the autism spectrum. PETA is misinforming the public about autism and thus joining a long line of unscrupulous groups that have sought to try and spread fear about autism as a means of pushing their particular agendas.

If You Could Say it in Words is a great new film about an autistic protagonist Nelson and his experience with love. The film is premiering at the Derby City Film Festival on October 8, 2008 at 9:00 PM. I wrote about my initial impressions of the movie and conducted an interview in February. You will also find clips from the movie in my previous article.

The film explores Nelson's Asperger's Syndrome without mentioning the diagnosis. The choice is intentional because many individuals with Asperger's remain undiagnosed. A recent documentary, Billy the Kid, similarly did not mention the protagonist's Asperger diagnosis, but If You Could Say it in Words is the first narrative feature film I've come across that explores Autism in such depth without hitting the audience over the head over and over again with the fact that it's about autism. Additionally, the film appeals to an audience greater than the autistic community because the questions it raises about love apply to autistics and neurotpyicals alike.

Autistic Dr. Temple Grandin, a designer of livestock handling facilities and a Professor of Animal Science at Colorado State University, is an icon in the Autistic Community. Her life has been a beacon and an inspirational story and after a long negotiation is getting her biography brought to HBO. Claire Danes is in negotiations to star as Grandin in the film which is currently moving forward after nine years.

"I made a commitment to Temple that I was going to make it and make it right," said Emily Gerson Saines, one of the executive producers, who has a son with autism. "I never pushed to get it made until now, because now we got it right."

As many of you have already heard, this past week talk radio personality Michael Weiner, better known on the air as Michael Savage, made several outrageous remarks in regards to autism, including, "Now, you want me to tell you my opinion on autism, since I'm not talking about autism? A fraud, a racket…I'll tell you what autism is. In 99 percent of the cases, it's a brat who hasn't been told to cut the act out. That's what autism is. What do you mean they scream and they're silent? They don't have a father around to tell them, 'Don't act like a moron. You'll get nowhere in life. Stop acting like a putz. Straighten up. Act like a man. Don't sit there crying and screaming, idiot."

Remarks like these spread ignorance about autism and threaten to return us to a previous era where parents were blamed and labeled as "refrigerator mothers" for having autistic children. Not only have Michael Weiner and Talk Radio Networks refused to retract these outrageous comments - they have added to them by claiming, unsupported by science of any kind, that the autism spectrum is an overdiagnosed medical condition. This is part of a broader pattern of statements attacking people with disabilities and our families.

Wrong Planet has joined a coalition of disability rights organizations calling for the sponsors of Talk Radio Networks and the Savage Nation to pull their support. Read on for the joint letter regarding Savage's remarks.

X-Files: I Want to Believe star Amanda Peet has spoken out against the "fringe medical groups and parent advocacy groups who claim that vaccines cause autism, or that they have too many "toxins," or "viral challenges" for our tiny babies' bodies to handle." In an article in Cookie Magazine, Peet is quoted saying "Frankly, I feel that parents who don't vaccinate their children are parasites."

Peet's comments are consistent with the medical community's growing concern that parents will not vaccinate their children out of a false fear that such vaccinations could cause Autism. Scientific studies have repeatedly found no link between vaccines and Autism and parents' fears to vaccinate their children are leading to outbreaks in the United States. Thiomersal, which contains mercury, was largely removed from vaccines a couple of years ago and the rate of autism diagnoses has continued to increase.

Read on for more information and links.

After the negative publicity Autism Speaks received for threatening to sue a 14 year old autistic girl for her perfectly legal parody website, you would think that the organization learned their lesson. Unfortunately, they're at it again, this time threatening an autistic blogger's t-shirt company with legal action for a shirt that read "'Autism Speaks' can go away. I have Autism. I can speak for myself." The organization claimed the t-shirt was a violation of copyright, despite the fact that such a t-shirt is protected as free speech.

Autism Speaks, which claims to speak for autism, has no autistic employees or board members with autism and is viewed as a bully by many autistic individuals who feel that the organization engages in tactics that marginalize their voices and contribute to an environment that hurts the lives of those with Autism. Their most recent move certainly supports such an argument.

Read on for the details and links.

Autism Western Cape (AWC) of South Africa is launching a fundraising campaign next week called Jail4Bail. The executive director of AWC plans on locking himself in a jail cell at a local mall until $128,000 dollars is raised. The promotional material for this event depicts a young girl locked in a jail cell followed by the text 'Help raise $128,000 dollars for Autism.'

Please note that I do support fundraising campaigns for autism if their purpose is to better the life of autistic people and if they ensure that the lasting image of autism left in its participants’ minds furthers the acceptance and inclusion of autistic people in society. Unfortunately, Jail4Bail does not meet this criteria and actually feeds a negative stigma in the media that hurts autistic people and their families.

April is the month for Autism Awareness and it got me thinking. I thought about what we could do to create more awareness and understanding during this month and came up with something I think would be a great different approach.

Let’s start off and continue the month by communicating. I believe the best way we can understand autism as well as understanding the so called “normal” world is by opening our minds and having honest communication. Some people may be doing this already, but it doesn’t hurt to continue or strive for more.

For International Autism Awareness Day, Ari Ne'eman delivered the following testimony to the Florida Autism Task-force.

Thank you for this opportunity to address the first meeting of the Florida Autism Task Force on today, the first World Autism Day. My name is Ari Ne'eman and I am here today in my capacity as the President of the Autistic Self Advocacy Network (ASAN), a volunteer non-profit organization run by and for adults and youth on the autism spectrum. ASAN works to promote the autistic culture movement and other opportunities for individuals on the autism spectrum to interact with each other as well as work to improve the representation of the autistic community in public policy deliberations about autism and disability affairs.

I recently read a review by David Kirby of Autism: The Musical published in the Huffington Post. You've likely never heard of him but Kirby is the author of a factually dubious book attempting to link the mercury that was once in vaccines to a perceived increase of Autism diagnoses. While Kirby is not a doctor, he claims to be an expert and has a habit of writing incredibly misleading articles about autism and frequently compromises any semblance of journalistic integrity he once had. Consequently he's not the type of person I'd usually respond to. However, in his review of Autism: The Musical, Kirby is worried that people might be concerned that the movie's depiction of "the two high functioning boys -- so bright and charismatic... will leave the mistaken impression that most children with autism are like this." He then made the exceptional claim that most individuals with autism are not "high functioning."

The question I'd like to raise is, "really?"

Katie Miller delivered a controversial testimony to the IACC committee on March 14, 2007. Wrong Planet previously covered the IACC meeting in these articles. Katie Miller has given Wrong Planet exclusive rights to publish her testimony on the Internet.

Read on for the entirety of the comments Katie made to members of the Interagency Autism Coordinating Committee.

Yesterday, I attended a Washington, DC meeting of the IACC, a US governmental administrative committee that decides where to invest federal autism research money. The meeting took up the entire day. The most interesting part of the event was probably the last hour when people were permitted to make comments.

Various members of the autistic community were present at the meeting to express their discontent with the current state of Autism research. The most memorable comments were delivered by Katie Miller, an autistic advocate who articulately and succinctly denounced committee member Allison Singer of Autism Speaks (who happened to be sitting three chairs down from Katie) for making derogatory comments about the value of autistic life. Read on to find out what exactly transpired.

I was invited by Ari of ASAN to speak at the Interagency Autism Coordinating Committee this Friday. The IACC, for those of you who don’t know, is a body of the National Institute of Mental Health (NIMH) that determines where to give grants for Autism research. In other words, this is the part of the government that chooses what gets studied about Autism. Like most government meetings, this one is being held in Washington, DC so all I have to do is take the metro.

I was required to submit a written set of comments I plan on speaking about on Friday. I’m basically going to be talking about how research needs to be focused on improving the quality of life for autistics. I’ll let everyone know how the committee goes tomorrow. Read my statement to the IACC after the jump!