Wrong Planet

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!

There are a lot of misconceptions about Autism floating around. Consequently, many people with Autism remain undiagnosed, countless autistics are misunderstood, and millions of dollars are donated to nonprofits who don't speak for those with Autism.

This is a troubling time for people with Autism (and I speak as one of those Autistics) because the media focuses a considerably large percentage of their Autism coverage on stories told by those who do not even have the condition. I've put together a list of only ten misconceptions that have been born out of the lack of an autistic voice in the media.

Washington, DC - 2/18/08 – The autistic community mourned the loss of Genevieve Edmonds, a UK-based advocate and author on the autism spectrum who committed suicide this past week.

Genevieve was a leader in advocating for increased visibility and support for adults on the autism spectrum. She authored four books: The Asperger Social Guide: How to Relate to Anyone in any Social Situation as an Adult with Asperger's Syndrome, The Asperger Personal Guide: Raising Self-Esteem and Making the Most of Yourself as a Adult with Asperger's Syndrome, Asperger Syndrome And Employment: Adults Speak Out About Asperger Syndrome and A Self-Determined Future with Asperger Syndrome.

Nicholas Gray’s directorial debut, If you Could Say it in Words, is a feature film about Nelson Hodge, a young African American guy with Asperger’s living in Philidelphia. While there have recently been a plethora of films about individuals with Asperger’s, most have been documentaries, and none have featured a protagonist with Asperger’s who falls into a lower-income socioeconomic class.

Read on to listen to an interview with the director and lead actor. We also have exclusive video clips from the movie.

I am a parent. I have Asperger's syndrome. I have two grown children, one of whom is on the autism spectrum. I am very aware of how parents can react to an autism spectrum diagnosis in their child. It's not hard to find descriptions of their reactions on autism support sites on the Internet or in the popular media. I know how my friends and acquaintances have reacted to their child's diagnosis. It's unfortunate that many parents are frightened by the diagnosis. It's tragic that they are frequently given endless amounts of bad advice which leads them to waste their time and energy and money. Some of the ways they react emotionally, and some of what they do to their child is, at the very least, less than optimal for their child's development.

Dear Aspie:

Do people with Asperger's who don't have schizophrenia hear things that aren't there? Like thoughts in your head that never go away? What is it called and what can you tell me about it?

-Tempy

Read on for BeenThereDoneThat's response!

According to a recent study, the size of brain structures in adult autistic brains look very different than those seen in autistic children.

Wrong Planet takes an in-depth look at this fascinating scientific paper published in the journal Neuron.

Read on for the exclusive article!

This morning I had a conversation with model and art student Heather Kuzmich, a girl with Asperger's who appeared on America's Next Top Model and won Cover Girl of the Week eight times in a row.

Read on for the interview.