Susan Senator

Here is my 13th column for Psychology Today. It’s been a great year writing for them! This column is about why autism parents say “I can never die.“

Today is World Autism Acceptance/Awareness Day. Do you light it up blue? Wear red?

(Answer: I only wear what looks good on me.) Seriously, I have nothing against the Blue. Or the Red. Not so for others in my community. The Blue is deplored by many because people in our community have a beef with Autism Speaks, the original Blue Puzzle Piece organization. The antipathy ranges from how AS funds are spent, to awful Public Service Announcements from their early beginning, to the fact that research is mostly about cause and not direct support. Causation research is by implication about eradicating autism. This feels like a threat to the self advocates who embrace their autism, or to other autistic loved ones.

But Autism Speaks is largely responsible for putting autism on the map, for opening the public’s eyes to this disorder and its challenges. For securing legislation and autism funding. They offer resources to families and autism-friendly events (theater, circus performances, movie nights) nationwide, opening up supportive activities to families who may choose to stay home because it is easier.  Maybe it isn’t enough, maybe they could be more sensitive in their message, maybe they need to ask autistics where the need is greatest. But I still would not throw the baby out with the bathwater. Autism Awareness is a tide that has lifted all of our boats.

However now it is time for a new kind of awareness. The red group has been instrumental in moving us all to a new paradigm for autism, which is to listen first to autistics to understand autism, and and open up policy-making and the seats of power to the neurodiverse. Wearing red is about being an ally to neurodiversity, a growing movement with the beautiful rallying call: “nothing about us without us.” The ND group aims to subvert the old autism narrative, to show that autism is not a scourge, not an epidemic, but rather something about oneself to be embraced. They identify as autistic, and with pride. I applaud this. The true human condition is one of broad and colorful variety, and our arms are wide enough to hold them all.

But I also understand that this message of “ask an autistic about autism” can feel like a tall order to the severe autism advocates, the parents who must be their loved one’s voice. I believe that most autism parents devote their hearts and much energy to helping their child communicate. But sometimes they have not been able to elicit enough information from their autistic child to know what they want, what’s the matter, what they need, are they sick, hurt, depressed… the parents must become detectives, hunting for clues to bring out that precious voice. The parents of the severe (I count myself as one), feel that they must speak for their children. And so, the neurodiversity folks see this as wrong, as something about us without us.

There is terrible animosity on the Internet between the groups, which is really too bad because like it or not we are one huge community, and we are really getting somewhere in terms of public awareness and acceptance. Inclusion in schools, inclusion in the workforce, inclusion in elections, inclusion in culture, all of this is happening! Not fast enough, not broadly enough, but that is the way all social movements go. Love takes time.  You don’t just overturn attitudes in a few years. More work is to be done, now and always.  But let’s do it together.  I agree with the sentiment I’ve seen here and there: “Celebrate autistics, not autism. Honor every experience. Gray areas, People.”

And don’t be a part of the problem. It’s hard enough.

Little Rainbow Autism Tree says, “You can do the thing”