Yesterday on the popular site Reddit, Robert Smigel (writer, actor, producer most famous for his work on SNL, Conan as well as the creator/voice/puppeteer of Triumph the Insult Dog) held what’s known as an AMA (ask me anything). He was promoting tonight’s Comedy Central event The Night of Too Many Stars, a fundraiser for Autism.
Over the years Autism Speaks and other charities have been attacked by people and families who live with autism every day over their fundraising, spending (or lack there of) and many feel that Autism Speaks doesn’t truly support those WITH autism, but only their families and wallets. I sent out a simple “Happy 10th Anniversary” tweet to them a couple weeks ago and was met by mobs with pitchforks. I know everyone is entitled to their own opinions and research for any charity they support, but the backlash that came with this had me really questioning both what I tweet about in the future and how so many people think their opinions are the only ones that matter.
Fast forward to today. I am a big fan and supporter of the Comedy Central event Night of Too Many Stars and while researching online about the creator Robert Smigel and his autistic son, I stumbled across this one particular question and answer from his AMA on Reddit. (link to the full AMA with Robert Smigel is here)
I have quoted it, in it’s entirety, mostly because I know click throughs can be annoying (but please click through as well because there are more fabulous questions and answers from this AMA that deserve to be read and applauded).
I’ve seen a lot of people with autism post online that they hate Autism Speaks because the organization makes autism seem like a disease that has to be cured. I always feel uncomfortable watching Night of Too Many Stars because of this. What’s your response to these concerns? Would you ever consider not supporting Autism Speaks?
RobertSmigel- 22 hours ago
People are entitled to have different opinions, it’s a very complicated issue, partly because the spectrum covers people who are extremely high functioning to others who are nonverbal and have serious issues like self-injurious behavior.
There are people with autism who are happy to be the way they are and that deserves respect. There are parents of kids with autism who struggle to communicate, who have very severe issues, who are entitled to wish for anything that could help their children. I’ll say two things – Night of Too Many Stars is NOT about curing autism. It does not fund biomedical research. I’m not saying this to take a stand – we don’t fund it because we’re more interested in something that many other national organizations don’t fund: helping build schools, community programs, and a wide variety of services to HELP PEOPLE LIVING WITH AUTISM RIGHT NOW. My own son, who is severely affected, could not get into a school that could adequately help him until he was 7 and it only exacerbated the challenges he faced. We do Night of Too Many Stars to address the enormous shortage of services that exist for people with autism. Sadly we’re still in the dark ages – research aside, we’re behind in simply understanding what people with autism know and feel and are capable of. Especially the severely affected people. Nothing makes me sadder than when people talk about my son in front of him as if he’s not there. They assume because he’s nonverbal, and often not engaging, that he can’t possibly understand or care. When he was diagnosed I read books saying people with autism all lacked empathy, and could not connect emotionally. I was happy to learn over time what bullshit this is, but the world at large needs to know it. Look up Katy Perry and Jodi on Youtube, and watch Jodi DiPiazza at our last NOTMS. As she plays, she gets spontaneous cheers and her face lights up for a moment. When my own “lower functioning” son ran a 5K, I sent friends a video taken by his mom. He has a huge smile on his face as he crosses the finish line, and then, almost immediately, stops and looks around. He’s looking for his mom to share the moment with. People need to see these kinds of things, and understand that people with autism are whole human beings, and deserve the chance to have the fullest lives possible. It matters to them.
Now my second, hopefully shorter, thing – Bob and Suzanne Wright of Autism Speaks are two of the most compassionate people I’ve ever met. Mrs. Wright took an interest in autism when my wife and I started the first NOTMS on NBC. She aked a lot of questions even though her own grandson had not yet been diagnosed with autism.
And Autism Speaks has been largely responsible for progress that everyone can agree on, like getting insurance reform passed in 38 states. For years insurance didn’t cover any behavioral therapy for autism…now thousand of families can better afford it thanks to hardworking advocates in Washington. Bob and Suzanne are at the forefront of that advocacy. And their work increasing awareness of autism has made the world more compassionate to people with the condition.
*cue endless applause and a standing ovation from me*
There really is nothing more I can add to this. He said everything I’d ever want to say and more.
Please tune in tonight (or if you are reading this after the event, consider looking it up on Comedy Central’s website or see if it’s on a site like Hulu). The pre-recorded event will be shown at 8p Eastern/5p Pacific and will be shown in real time throughout all time zones (no tape delays!!!). I will be live tweeting from @ColoradoMom if you’d like to join the conversation.
To donate $10 text STARS to 50555 or visit cc.com/stars for more donation opportunities.