April is Autism Awareness month. A good friend came into the store last week. She is one of the smartest people I know, who has left no stone unturned looking for answers to treat her children. Her efforts and knowledge have most likely led to their recovery.
She bought a pretty puzzle piece necklace we sell at the store and got to talking about autism awareness. She said, “I’m so tired of ‘autism awareness.’ What does that even mean? We don’t need awareness, we need treatments, we need answers—real answers for the families who have autism today.”
Of course I agreed with her because she’s one of the smartest people I know and because she has an excellent point. For the families struggling just to get through their days (and nights), to find therapy and afford therapy, to keep their relationships intact and maintain a modicum of personal care, “autism awareness” can seem like a lofty and faraway idea we just don’t have time for.
But the next day I had an experience where I think “autism awareness,” whatever that means, may have actually helped make my life a little easier. I took my daughter to the movies for the first time in 5 years. The last time it didn’t go so well. At the ticket booth, I explained that my daughter had autism and asked if I could get a refund if we weren’t able to stay for the movie. She said, “of course!” Then, as we were presenting our tickets, a manager who was nearby came over to say, “Don’t worry, if you aren’t able to stay through the movie, we will compensate you. We’re glad you’re here.” It probably helped that my daughter had her fingers in her ears. Not long ago, we would have been received with looks of curiosity at best. “What is autism?” Why does that girl have her fingers in her ears?”
I don’t know what role the autism awareness movement plays in spreading awareness. With 1 in 50 people now being diagnosed (!!?@), more people are aware because almost everyone now knows someone with autism! http://www.webmd.com/brain/autism/news/20130320/one-in-50-school-aged-children-in-us-has-autism-cdc. Still, I like wearing my puzzle piece jewelry. For people who know what it means, it sends a message that I understand their journey. For people who don’t, it’s an excellent conversation starter.
Autism research is still ridiculously underfunded and daily life for families is a challenge. Some less well known organizations are working very hard to fund research and programs to help all our kids have more opportunities and better treatments today, so more families can go to the movies like everyone else.
The National Autism Association (NAA) works “to respond to the most urgent needs of the autism community, providing real help and hope so that all affected can reach their full potential.” http://nationalautismassociation.org.
Talk About Curing Autism (TACA) “is a national organization dedicated to providing information, resources, and support to families affected by autism.” http://www.tacanow.org.The Autism Research Institute's mission “is to meet the needs of the global autism community through research, networking, education, and support for families and people of all ages on the autism spectrum.” http://www.autism.com.
The UC Davis MIND Institute (Medical Investigation of Neurodevelopmental Disorders) “is a collaborative international research center, committed to the awareness, understanding, prevention, care, and cure of neurodevelopmental disorders.” http://www.ucdmc.ucdavis.edu/mindinstitute/
The Celebrate Autism Foundation “promotes opportunities and encourages success for the autism community by serving as a resource of information and providing funding to programs that serve individuals on the autism spectrum.” http://www.celebrateautism.net/.
Supporting these organizations helps our families get the support they need now and helps solve the puzzle, so one day our numbers will not be so shocking and the autism awareness movement will be a thing of the past.