Susan's Blog

Tuesday, April 2, 2019

Light it up blue or red? We need a whole rainbow

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”

1 comment

As an autistic mom of an autistic teenager, I can vouch for the terrible infighting that goes on in this community. Here in Ontario, it is particularly bad right now, as our newly elected Trump-like provincial government is decimating both the provincial autism program and the public education system, to create a perfect storm of chaos for families affected by autism. Parents are desperately scrambling to find the money to help their autistic kids when the government money stops coming, and autistic adults are vilifying those parents who dare to think they can speak for their kids. But as you said, many kids – my own son included – cannot speak for themselves. Us parents have to speak for them. And what many people fail to acknowledge is that even verbal autistic people like myself cannot speak on behalf of the entire community, because autism by its very nature is so diverse. We are in a state of crisis here in Ontario. Since the government announced its changes, we have lost one autism parent to suicide, and we are all practically living at the provincial government offices as we hold protest rallies. And instead of everyone standing together and supporting each other, we have people judging each other and deepening the divides that have been created by the government. It is unspeakably sad.

— added by Kirsten on Tuesday, April 9, 2019 at 10:48 pm