Doors: a silent animation I made for Autism Awareness Month

A couple of days ago, my friend Jennifer, who keeps a great blog called Teaching the Boy, initiated a conversation with me about my generally negative impression of Autism Speaks.  I decided to put together some of the things I said there with "Doors," a silent animation that I made to help sort through my own complex feelings about Autism Awareness Month, something I have felt silenced by.

Ultimately it's less that I think Autism Speaks is bad than that I think it represents the interests of people who have kids with autism rather than people who have it. That's not a bad thing, but it's not who I am or who I care most about. I think the voices of adults on the autism spectrum are underrepresented and devalued.

I would not say today that AS demonizes people with autism, as I did when I started thAutcast. I was impressed that they refused to take part in the Dr. Oz TV show unless it talked about autism as a whole-life issue, rather than focusing on just the cause. And they have put someone with Aspergers on their board. Of course, John Elder Robison is also a PARENT of someone with Aspergers, so he's also a part of their base. Autism Speaks has changed its public face in a positive way, and I have commended them for that.

These are things I would need to see happen in order for me to have a positive impression of Autism Speaks:

1. Order a complete audit done by an independent firm. Admit bad management of funds in the past. Reduce salaries. Become completely transparent about finances.

2. Make support to people with autism the focus of what they do. Make funding research secondary. Focus especially on the period of early adulthood, where no services tend to be available.

3. Expand the role of people with autism in the organization. Include adults with autism who are not parents on the board. Become a model for hiring people with autism-- many of the people who work there should be diagnosed.

4. Make visibility for people with autism a goal of its fundraising. Walks and blue lights do not tell people anything about what it is like to live with autism. Require that people who want to design purses, or give concerts, or write children's books to make money for the organization include people with autism in both the creative and production phases. The blue light thing has been especially galling, since Autism Speaks has shown no interest in how the 2012 change in lightbulb standards may hurt people with autism.

NBC News did a dual profile of Vanessa Trump and J. Ralph that offers an entertaining contrast between the ways different celebrities help autistic people.

Want to know why I'm still not a fan of Autism Speaks? Trump's work with the organization has led her to believe that people with autism are mutants who should be eradicated:

One of the things I’ve learned in the past year is that both genetics and environmental are factors in play. Genetic risk factors were found this year in children with autism that were not present in their parents. That means that the mutation may either be spontaneous or may be the result of environmental risks.

Update: Thanks to friends who pointed out that I am the one being offensive by using the word "mutant" here and that what Ms. Trump says is scientifically correct.  I blew it, and I'm sorry

I want to try and raise as much money as I possibly can to definitely try to find the cause or the prevention or whatever we can for autism, so that it doesn’t happen to so many families or any families at all.

Vanessa's way of helping? Mostly about promoting the purses she's designing:

I’ve been working on a handbag company for two years, which I really started this past year. When you start a company it takes a long time to get the right products. So I designed these python bags. There are about six strong pieces in the collection. Instead of just people making money and putting it in to buy a new car or a new apartment, I thought: “You know what, I actually want to design bags and give a percentage of my profit to a charity.”

So, I thought of Autism Speaks, I looked at their color, which is skyscraper blue, and I designed them [the bags] in that color. So, a percentage of the profit of the sales of any of these bags that are order in that color will go to Autism Speaks.

Skyscraper blue?  Is a color?

Remember-- it was NBC, not me, that paired that interview with one that J. Ralph did about his work on the soundtrack for the documentary Wretches and Jabberers.  Here's why the composer got involved:

It’s just a human rights issue for me. They’ve been marginalized. They’ve been forgotten. They’ve been not given a chance to bring something to that table, and that’s not really fair for any group, or any person to be subjected to that kind of treatment. So, as I said before, their bravery, creativity and perseverance is what drew me in. But, what helped seal the deal was the fact that everybody needs to be given a chance to shine.

Click to see and hear J. Ralph's work on the film.

On his blog, John Elder Robison has introduced the Autism Connects Design Challenge: We’re awarding prizes for the best ideas to help autistic people overcome communication challenges. So what, you ask, is a communication challenge? In this contest, the term “communication challenges” is very broadly interpreted. A technology that helps Asperger people make friends can be considered, as can a device that helps nonverbal people talk. Tell us what challenge your device addresses, and how, and you’re in. Entries will be judges by a panel consisting of myself, Temple Grandin, Peter Gerhardt, Peter Munday, Andy Shih, Dan Feshbach, Richard Seymour, and others.

Click here to vist the project website.

The intensity of the joy I feel after learning that Autism Speaks is raising money with White Castle scented candles was only heightened by the contrast with this fundraiser by the National Autistic Society in the UK.   They are offering the world's most expensive Christmas bauble:

This incredibly intricate piece, which took over a year to design and produce, is made of 18ct white gold, and encrusted with 1,578 diamonds, with a total weight of 18.64 carats. It is surrounded by two rings featuring 188 red rubies and three Roman Rub-over set one-carat diamonds.

The bauble also features a snowflake cut out pattern and comes in a bespoke handmade wooden box, complete with a stand and has been independently valued by the Goldsmiths Company. At least 15% of the money raised will be donated to the National Autistic Society (NAS), the UK’s leading autism charity.

Jane Asher, President of the NAS, comments, “I’ve been a fan of Embee’s beautiful diamonds for several years now, and this Christmas decoration is absolutely stunning: whoever is lucky enough to buy it will have something truly unique and beautiful that will be an heirloom for generations. The money raised from the sale of this wonderful piece will help The National Autistic Society provide support, advice and information to some very vulnerable children and adults at a particularly difficult time of year. For people with autism the changes to routine and endless surprises of the Christmas period can make life especially frightening and I’m extremely grateful to Embee Jewels of London for their kind gesture.”

Click here to read more.