I know many people who actually are autistic despise Autism Speaks and I get that. I'm still going to "light it up blue" for awareness this month. It's important that we start seeing all people, not just neurotypical people, as people.
My friend, Heather Rae Gratton, wrote this and has given me permission to share it here.
Today is World Autism Awareness day!
To be completely honest, I struggled with how to participate today. I
know the majority of people will be "lighting it up blue" and I love
seeing so many people talking about autism today and showing their
support. However, what most people don't know is the the organization
behind "light is up blue" is Autism Speaks and at their core they do not
truly support autistic individuals and their families. The more I'm
learning about them the more I'm not comfortable with their message of
fear and despair associated with autism and presenting the lives of
autistic people as tragic burdens for their families (There are a BUNCH
of other issues I have with them. See here and here.). When I worked in the autism field before I had my boys I never
thought twice about it or looked into it. I simply never thought to
question them.
But now I have two autistic boys and I have a
completely different perspective on what "autism support" means. YES, I
want to find ways to ease their many struggles due to autism and yes
many days are harder than I ever imagined. Yes, yes, yes there is a need
for more awareness and support! However, I do not wish to "cure" my
boys. I can't imagine who they would be if their brains didn't work they
way they do. It's so much of their personalities and what makes them,
well, "THEM". They do not have a disease. Simply put*, their brains are
wired differently than non autistic people. That is all. (*autism is
obviously more complicated than I can state here briefly so please don't
misunderstand my use of the word "simply" but it is NOT a disease like
polio etc)
For World Autism Awareness day my wish would be a
world where my boys do not think something is "wrong" with them or we
have to find the "missing pieces" for them to be whole but a world that
understands they are complete individuals as they are and yes,
different.......but it is OK! (and back that up with more education for
the general public/school system and support for families and autistic
individuals)
As I mom I want to help my boys THRIVE not "fix"
them. I want them to embrace their individual unique strengths and learn
how to overcome their challenges. I want them to grow up in a world that embraces "neurodiversity" not
just "supporting autism". A world where we CELEBRATE minds that work
differently not fear them.
2 comments:
This is very well said! Every time you look around they say this causes autism and that causes autism and then I hear on the TV how "curing" autism is early intervention and I find myself screaming at the TV because early intervention just helps them function like an neurotypical child that doesn't mean that they are "cured". I don't want a cure either as my kids wouldn't be who they are. I could totally relate to the beginning of the post as that is really how I was all week. I know the TV thing had nothing to do with the post but it reminded me of things I had seen on TV that talk about cures. I think really all I want during autism awareness month is for my kids to be accepted for who they are.
Great comments, Stacie. I agree. Malachi is funny and serious, energetic and lazy, social and a loner. He is who he is, and what part of that would change if he could be "cured?" I don't think I want to know.
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