Feeling Blue - 04/02/14
Today is World Autism Awareness Day and there are many events and lightings around the globe to mark the day and to increase awareness of autism spectrum disorders. It takes great effort and money by many to coordinate events, manufacture blue light bulbs and to pay for capital buildings and other iconic landmarks to go blue for a day.
The outpouring of support is amazing and so appreciated. But I still must ask as an advocate and a mom, why do we continue to allocate scarce resources to inform the last few people who don’t already know that there's an autism epidemic? The new numbers, 1:68, make it a virtual probability that everyone knows someone with autism.
We are all too aware.
Today I celebrate the many small and big steps my son Patrick and the thousands of children, teens and adults with autism living in our state have made. I also give thanks for the professionals of all disciplines who chose to work each day to improve the lives of individuals with autism. They inspire me each day to continue to fight for more programming, research and supports.
We need action.
It's time we open our eyes as a state, nation and world community to the costly realities of autism for families and communities and raise our voices to demand change.
Where's the panic? Where's the outrage that each year more children are diagnosed with an ASD and we still don’t have a road map to assist families in their search for care, medical advice, appropriate school environments and social supports?
I respect people’s discomfort when we discuss a cure for autism. I think we need to continue to talk together to understand the needs of all levels on the spectrum. Wanting to cure your child of physical distress and to give him/her a voice does not equal wanting to eliminate individuals on the spectrum. We aim to give each person what they need to be the best them possible.
Today, we need to move away from costly awareness events and celebrate our friends and family members living with autism and begin to demand action towards getting appropriate resources.
Where's the appropriate funding level for research to identify a cause and more interventions? Where's stable funding to support organizations to provide evidence-based practices to teach people with an ASD to live independent, happy and productive lives? Where is a plan to provide housing, supported employment and quality of life for the more than 50,000 people with autism aging into the adult system this year and the following years across the States?
In Rhode Island the number of adults with an ASD will skyrocket in the next few years. My fear is the appropriate resources are not available, programming is limited and not prepared for the supports people on the autism spectrum of all abilities will need.
So on this World Autism Day I am blue, but not to increase awareness. I'm blue because incidence numbers of 1:68 still don’t create a sense of urgency or panic. I'm blue because autism still receives 1:16th the research funding of childhood cancer, diabetes and AIDS despite the annual increase in incidence. I'm blue because every time a report airs about autism you can still hear crickets in the room.
Today, take action to address this epidemic. Call your local, state and federal legislators. Demand that autism be put on the agenda and a plan is developed to address the multiple areas of need today!
Take time to support an individual with autism or their family members. We all know someone with autism.