Autism Speaks Doesn't Speak for Me

A few years back, I signed my family up for our local Autism Speaks fundraiser walk.  I was looking forward to an activity we could all do together, surrounded by people who wouldn't think us odd or unruly.  I was happy to raise money and encourage my friends and family to do the same; after all, Autism Speaks was the only organization I'd heard of for people like my son, recently diagnosed with an Autism Spectrum Disorder.  We arrived on the morning of the walk, a sunny Sunday that was perfect for spending time outside at our local park.  We converged with many other families.  We saw large groups wearing matching shirts; we saw men dressed as superheroes and women dressed as princesses.  It was my first experience with an autism community after an isolating couple of years filled with tests and questions and frustration.  I kept looking around in wonder that there were so many people like us, that we had found a place where our son could be accepted easily.

Wearing blue as we walk for Autism Speaks 2012

There was something else I noticed that morning.  The walk organizers had posted signs along our path announcing statistics about autism.  There was one stating the latest CDC findings of autism occurrence.  There were signs about the cost of treating autism.  It was good to remind us why we were walking.  It was good to spread awareness among the walkers and anyone else out that morning.    But I got uncomfortable when I saw the sign comparing autism to pediatric cancer and AIDS ("More children are diagnosed with autism than pediatric cancer and AIDS combined.")  After all, autism affects my son's mind; it makes him process information differently.  But cancer and AIDS...they affect the body.  They make children sick.  They require lengthy hospital stays and expensive medication.  And they are lethal.  Autism will never take my son's life.  A lack of support and understanding by strangers could very well put him in danger, something that has happened to autistic teenagers and adults who have been unable to communicate properly with police officers and other public officials.  Beyond that, I am thankful every day to be the mother of healthy children, to be able to send my kids to public school, to barely give cold and flu season a passing thought.  The comparison of neurology and immunology seems ridiculous.  Then I saw some walkers carrying signs which demanded a cure.  A cure?  For autism?  Therapy, sure.  Assistive technology to bridge the differences between my son's mind and the neurotypical world in which he lives, of course.  But what would we be curing?  If some medication took away my child's autism, what would be left?

I went home feeling unsettled, but not sure what it meant.  Over the coming months, I learned more about the organization we had been supporting for our walk.  Autism Speaks.  What a great name.  For the confused and desperate parents trying to figure out how to best care for a non-verbal child, what a promise it offers!  They state on their webpage that their goal is "to change the future for all who struggle with autism spectrum disorders."  That's something this advocate mama can get behind. But how are they actually doing that?  What percentage of the money raised from walks like the one my family participated in is being used to alleviate the "struggle" of autistic individuals?  I read a book called "Raising Cubby", which introduced me to its author (and awesome role model for my son), John Elder Robison.  The book offered insight into the experiences of growing up autistic, the criticism and confusion he experienced, as well as the jobs and discoveries his mental makeup allowed him to excel at.  And then I read his blog about resigning from Autism Speaks after his efforts to be heard were repeatedly ignored.  He writes, "We do not like hearing that we are defective or diseased.  We do not like hearing that we are part of an epidemic.  We are not problems for our parents or society, or genes to be eliminated. We are people."  This resonated with my feelings after the walk; this put words to the twist in my stomach.  My son is not sick.  My son is not a problem or a burden.  And an organization that describes itself as changing the future for autistic people shouldn't be misleading the public about what exactly they struggle with.

I found more perspective on my beloved Diary of a Mom blog.  I read her words and nodded.  Yes.  YES.  This organization that compares my son's brain to an immunodeficient body is missing it.  They are missing what it is like to live with autism.  They are missing what is going on inside that beautiful brain.  This organization that claims my son is a burden is missing it.  They are missing the joy we experience every day as a family of five.  They are missing the laughter and chatter coming from the bedroom he shares with his brother long after the lights have been turned off.  This organization who claims that my son is MSSNG, or that he is MSSNG some vital component of humanity, they are missing it.  They are missing the vital presence of autistic people.  They are missing the conversation autistic advocates are desperate to have.  They are speaking, but they don't speak for our family.  They don't speak for my son.  

He is learning every day, he is gaining words and the skills to express himself.  We are equipping him to speak and stand up for himself.  And the greatest opportunity we can give him is to listen.  That voice, oh how that voice delights me.  If he's angry, he tells me.  And I want to know: Why are you angry?  What do you do with those feelings?  What can I do to help you?  If he's happy, he tells me.  And I want to know: What makes you happy?  What can I do to make you feel happy more often?  And sometimes he just laughs.  I don't know why, it's something that only he is seeing or hearing.  So guess what I do?  I laugh with him.  It doesn't really matter what's causing it, honestly.  I love an excuse to let out a good belly laugh.  And then he looks at me, as we laugh together, and often he hugs me as we experience this happy moment.

So this is my plea, today and every day:  Don't support Autism Speaks.  Give your money to an organization that will actually use it to help autistic people right now.  How will you know which one is doing that?  Use this guideline, shared so generously by John Elder Robison:

"What we need right now are therapies to help us be the best we can be, as we actually are.  We need tools to help us overcome physical limitations.  We need solutions for the medical problems that plague many people on the autism spectrum.  Those are things autistic people – child and adult alike – want and need right now.  The range of therapies, tools, treatments, and services needed is long and varied – and largely attainable, given the budget and the focus.

We also want societal change and acceptance.  We want sensory friendly workplaces.  We want jobs shaped to our different abilities.  We want help navigating the education and employment mazes.  We want to be productive members of society.  Those too are things we want and need right now.  They too are attainable given the resolve, budget, and legislation to back it up."