The Responsibility of Representation

Written by PK

Originally published at Walkin on the Edge

I’ve been wanting to write about the Autism Speaks Op-ed piece written by Suzanne Wright, but finding the words is difficult.  I’m not going to write (much) about how upset I was at her words –others have written very powerful commentaries and have already done it better.

I’m taking a different approach – Responsibility.

If you put yourself forward as AUTISM Speaks – you can’t just speak to your experience. When you say you speak for Autism, you actually have to speak to the many facets/experiences of autism  - from the parenting perspective, AND from the AUTISTIC perspective – otherwise, you’re acting irresponsibly and others pay the price.

I’m a mom of a boy with PDD-NOS. I write a blog about our experiences, about my feelings, fears, hopes, challenges, and joys. I write about things that I learn from other autistic bloggers – things that they write that make me think deeply, differently. I write about things that I see that are important to me – general parenting things that are accentuated by being the parent of a child on the spectrum, things like: behavior is communication, meltdown prevention, chosing words wisely, respecting my child’s thoughts/feelings/physical space, bullying, empathy. These issues are important to pretty much every parent, but (at least in my experience) are spotlighted when a child is on the spectrum.

I’m a new blogger. My words have power, but that power is limited to the few people who read my blog. Perhaps someday I will have a readership that reaches a broader audience; that’s not my current reality. BUT I WRITE AS IF IT WILL, because I have a responsibility – in a way, my words represent others. Those who read my words will (hopefully) be affected by them in some way. They may see themselves in my words. They may see another experience in them. I recognize and accept this responsibility because I’ve chosen to advocate in this small way for my family, my child, for autistic people I care about – those I know personally, AND those I’ve never met.

I write about things from MY perspective, but in my writing, I do my best to NEVER forget that there are those out there whose experience is nothing like our family’s. My son’s sensory issues are not challenges to overcome when running a simple errand. My son is verbal and can generally tell me what he wants/needs (as much as a 6 year old can, anyway) – though I find that he can take hours-to-days to process experiences before he talks about them. All in all, compared to others on the spectrum (so far) we have it “easy”.

But I know, because I READ, I LISTEN, that mine isn’t the only experience of autism. I know that many autistic people aren’t and/or won’t ever be able to live on their own. I know many can and do live on their own, but that sometimes it is very challenging and overwhelming to do so. I know that holding a job when you are autistic is hard – even when you are VERY qualified – because the NT world finds you “too weird” to fit in. I know that teens are bullied for being different, and then BLAMED for being different and being bullied (the “why can’t you be more normal?” reaction).

But I know, because I READ, I LISTEN, that some parents can hardly leave the house because it is just too much for their child to tolerate. Some parents have children that are so overwhelmed that they lash out physically, and the parents aren’t able to help them/comfort them, and are often afraid themselves.

But I know, because I READ, I LISTEN, that children across the spectrum need support – and there just isn’t enough; that teens across the spectrum need support – and there just isn’t enough; that adults across the spectrum need support – and there just isn’t enough.

I get that Mrs. Wright is upset, angry, distraught that her grandchild faces so many challenges. I get that she wants to help others that face these challenges. That’s great, it’s wonderful, it’s needed. But it is irresponsible and disrespectful to say that you seek to “change the future for all [my emphasis] who struggle with autism spectrum disorders”, yet refuse to listen to them! As the head of a multi-million dollar charitable fundraising organization, to disenfranchise those who you purport to serve is mind-boggling. Those Autism Speaks local branches who DO try to work for ALL autistic people and their families are damaged by the very organization they work for.

From her words, and actions, Mrs. Wright’s Autism Speaks does not respect autistic individuals, and isn’t interested in listening to those who aren’t “autistic enough” (like my son), nor in helping thoseautistic adults who ALREADY exist and have ALREADY “grown up and out of the system” and are LIVING the so called “productive future” that she is supposed to be fighting for.  The upper echelon of Autism Speaks doesn’t listen to autistic people. The only autistic that was involved with them resigned, because Autism Speaks is “failing to connect to the community it purports to represent”.

I respect Mrs. Wright’s desire to make life better for her family, to want to help, heal, protect - as a mom I get it because it’s a visceral thing. But when you turn that desire to help your family and build it up into an organization that wields power, you need to do it RIGHT.

LISTEN to the SPECTRUM of experiences. Don’t discount them just because they are not yours.