On April 1 and 2, blue lights will be shining in cities all around the world to
help promote autism awareness. In Seattle, The Children’s Museum will be open early exclusively to children with autism, who will be charged a reduced admission fee. People will walk, run, and attend banquets in honor of Autism Awareness Month.
But will these things really matter or will they be window dressing that covers the hard work that actually remains to be done?
I know I can’t address the things that most concern me alone. My twin sons, who are teens, are both on the autism spectrum. One of them was hospitalized for two months and the children’s hospital where he stayed was woefully unskilled at contending with his condition. This hospital opened a fancy new autism center down the street, but there’s a firewall between the two departments and zero protocols exist for managing a patient who also happens to have autism. Many mistakes were made that created an experience more harrowing and traumatic than it had to be.
School systems across the nation vary wildly in their commitment to their students with autism. Lack of training, fear and ignorance keep progress at bay, inhibiting our legal and moral obligation to provide all children an appropriate public education. Then there’s the tragedy of bullying, rendering our schools unsafe on many levels.
Haunted by the recent police events in which teens and young adults face disaster and even death because officers are untrained in autism, I fear for my sons’ safety should one of them happen to get stopped.
And what about their futures? Where and how are they going to live if something happens to me? They are without support systems in the community and have no extended family.
I’ve lodged complaints, called officials, gone to war over and over again with the school system and am left feeling like David squaring off against Goliath without a slingshot in sight.
Autism Awareness Month makes me most aware of the need to build coalitions around common causes because this is the only way that vast bureaucracies like hospitals, law enforcement and school systems will feel compelled to change.
My nature is to be a loner, but my passion around autism issues makes me aware that I need to find like-minded people and get to work to help our children with autism. Don’t get me wrong, I’ll enjoy those blue lights and the attention they will bring, but I will also focus like a laser to make sure they are not just for show and actually mean something that impacts the lives of those affected by autism.