I think there is a big need for adults within our autism community to come together as advocates to have our voices heard. I’ve believed this ever since I started to become an advocate six years ago.
The popular image of autism today continues to focus primarily on children. The reality is that there are already many adults with autism who will be joined by a growing and staggering number of children. This is why our voices as adults with autism are so critical. We need to define the conversation to succeed as adults. We must communicate how we feel and what we need so we can pave the way and help those around us be ready for all the children who will become adults in the next decade.
I sometimes question if we are changing the conversation for those who are in that neutral area. During my graduate work, I took a course in persuasive communication keeping those people in mind. Not people who are our supporters already but those who are completely neutral about the conversation. The more media attention I see focused on children I can’t help but believe those people in the middle also need to hear more from the adults on the spectrum. The conversation must be that we need more supports in the area of transition, training, employment, housing, insurance and medical care. Adult services need to be a national priority.
This need for this discussion came up a few weeks ago. I was giving a speech about having autism in my hometown for Autism Awareness Month. My presentation was centered on growing up on the spectrum and becoming a young adult on the spectrum. I don’t want to overanalyze this, but talking about my early intervention and getting kicked out of two preschools was of greater interest to the audience than discussing the need for adult services.
I guess the discussion has to start with me. To quote one of my favorite lines …
“Children with autism do grow up, and we need to be ready for them.”
I will now add …
“Adults with autism have grown up and we are not ready for them.”
The reality is that too many young adults age out of school and services at 21 and face lives with reduced supports, services, and little opportunities. We have been able to offer hope to the children. Now it is time to have the conversation expand and be about hope for the adults in our community.
To that end I would encourage all adults with autism to contact me to begin the dialogue on what services have worked for you and what is still lacking. If you are already having the discussion, include me in your dialog. If we are going to make this a platform for the national agenda we need to come together with our many voices and speak as one adult community.