It’s World Autism Day again

Today is World Autism Day.  It seems like only yesterday that it was last year’s World Autism Day. And yet, here we are again.

This day is always difficult for me, because while on the one hand, I want to say “yes! Let’s focus on autism and how it affects us!”, I just can’t, because of who is behind this campaign. Autism Speaks is the primary organization behind autism awareness, especially in the United States.  I cannot condone their message of fear and dehumanization.  I cannot sit back and be passive.

When I see that blue puzzle piece, or one of those Autism Speaks arm bands/bracelets, something within me dies.  Something makes me feel ill and shaky, and I wish that I didn’t have such a visceral reaction to a symbol like this.  But this is my blog, and I’m an honest person, and yes, Ms. clothing store manager, every time you hand me your Autism Speaks Chase card, I have to curb my desire to just promo off your entire meal so that Autism Speaks doesn’t receive a cent.  

I was a naive person for a long time.  I believed that most people were good and didn’t wish to cause any harm. I still think in some ways that is true, but not meaning to do harm and actively working to not cause harm are two different things.  When a child is diagnosed with autism, one of the first resources that medical professionals usually hook parents up with is Autism Speaks.  So being clueless and not understanding the harm is really not something I’m going to be angry about.  However, if an autistic person (or ally) says “hey, Autism Speaks is bad because of these reasons” and you still insist that we have to do something to prove it, well, I know that I can’t count on you to be my ally, and you are certainly causing harm.

There are dozens of companies, celebrities, and even philanthropic associations that support Autism Speaks.  They mean well, but they consistently ignore autistic voices.  I had a rather enlightening interaction just today with Ed Asner, and it made me incredibly sad and frustrated that someone who has the ability to do so much good chooses instead to complain about autistic people making too much of a fuss about Autism Speaks.  Last year, I was accused of being a troll by William Shatner’s Twitter followers because I tweeted the same message to half a dozen celebrities, who were taking part in a very specific venture with Autism Speaks.  It’s nothing new, but it’s frustrating that it seems like people only care about supporting “autism awareness” when it doesn’t cost them anything.  I don’t mean financially.  I mean, “hey, look, I did a good thing – I support Autism, so there’s my good deed for the day and my pat on the back.”  

I want real support. I don’t want this feel good “support” that does nothing to help me, my kids, or anyone else who shares my diagnosis.  What good does it do to be aware that autism exists? Most people are aware, but many people still call autistic kids brats, don’t understand what autism actually entails, and even parents of autistic kids still attribute things that are not autism to autism (like seizures, gastrointestinal issues, etc.).  

So for World Autism Day, what I’d really like is acceptance and understanding.  I want people to understand that I am a person, I am an autistic person, and no, I don’t need that part of me erased.  I don’t need a cure, and autism didn’t kidnap the allistic child that I would have been.  I didn’t destroy my parents’ marriage.  I didn’t ruin my family’s lives.  

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