Blog_AutismSpeaks

April is autism awareness month. The Women of The Agency are proud to support the 3rd annual Light Up The Blues concert on April 25 at the Pantages Theatre. The event, hosted by Stephen and Kristen Stills, benefits Autism Speaks, an organization that works relentlessly to fund research, and to support, educate, and advocate for families dealing with autism. This year marks the organization’s 10-year anniversary, celebrated by a concert with MC Jack Black, performances by Neil Young, Stephen Stills, Shawn Colvin, Steve Earle and many surprise appearances.

The Agency’s Kathrin Nicholson, Director, Residential Estates, has been involved in the event for the past 2 years. “I can honestly say this is an evening of laughter, love and incredible music that touches everyone in attendance.”

Stephen and Kristen generously lent their time for a Q&A about the organization and concert.

Stephen and Kristen, you have a son, Henry, on the spectrum. What kind of improvements have you seen with regards to assisting autistic children and their families over the years? I know the number of kids diagnosed has increased significantly to 1 in 68.

Though we see more and more support from the general community and more therapeutic, educational interventions, it is staggering to see how many children and people of all ages are now affected by Autism. One of the things that drew us to Autism Speaks was the multitude of free “Tool Kits” they offer on their website, such as the “100 Day Kit,” which walks parents through the first 100 days after diagnosis. There is so much more support for parents—thanks to organizations like Autism Speaks—and that has made a huge difference. Also, Autism Speaks’ “Missing” collaboration with Google is a database of genetic information from people with Autism and their family members to be utilized and studied in an open source format for the scientific community. Absolutely groundbreaking in the field of scientific research.

I spoke with Liz Feld, president of Autism Speaks, and she said a big issue to overcome was the stigma in certain cultures on having a child diagnosed. It delays early intervention, which is so crucial. It seems like an event such as Light Up the Blues would go a long way towards softening that outlook…

Yes, for sure that is at the top of the list for us. Acknowledging the tremendous challenges that are characteristic of Autism, while celebrating the enormous gifts. Autistic individuals tend to be our best and brightest, but their ability can become locked up by the disability.

At our show we give 3 kids the spotlight and let them do the shining! We hope that what we are doing encourages people to be proud of their autistic child, not to hide them from the world.

Stephen, you’ve managed to get some remarkable performers over the last 3 years… CSN of course, John Mayer, Neil Young, Jack Black, Rickie Lee Jones, Don Felder and Ryan Adams. Is there any arm twisting that goes on, or does everyone jump on board?

Never! They always seem thrilled to participate, and often share with us about their own kids, nieces and nephews, and of dear friends who have an autistic child. They are frequently quite familiar with the challenges and happy to be a part of the celebration of these talented kids, and to help in fundraising and to raise awareness.

Does it surprise you anymore how many people’s lives are touched by autism in some way?

Yes. It is very hard to come to terms with and as much as we have a feeling of adoration for these individuals, there is a deep sadness and always the question of “What is really going on here?” We need answers.

Kristen, you won an Emmy several years ago for producing the documentary, Autism the Musical. It’s such an uplifting film; is there a place where people can go to watch it?  Also, of course, the DVD of the first Light Up The Blues concert?

Good time to ask! We are currently re-negotiating our deal with Netflix so that Autism the Musical can finally be streamed. We hope it will be available before the month of April is over, so PLEASE look for it. It has sadly become even more relevant with statistics on the rise. The film can also be purchased on Amazon. The Light Up The Blues film is available on iTunes, and all proceeds benefit Autism Speaks.

You must be so proud of Henry; he’s about to start college. In all your years of personal experience is there any crucial advice you’d give to parents dealing with children on the spectrum?

Oh that would take hours…

Never doubt your child’s inherent ability to be brilliant. It is in there, and you, along with enlightened teachers and great doctors and therapists, will be the one to draw it out. Whatever interests your child, go with it! Follow their lead. Ultimately, all of these kids are our teachers.

Always make sure the documentation of his/her diagnosis stays current, and never let it lapse. You will always need it. Don’t be ashamed of a label. Use it to your kid’s advantage!!

Always know your rights and your child’s rights. Don’t ever be talked into anything that you feel is questionable. Get an advocate if necessary, and if something seems fishy, follow that smell.

There are so many online forums that can help, including blogs with scientists and doctors on Autism Speaks’ website. Become a research expert!

For more information on Light Up The Blues or to purchase tickets click here.