Autism Awareness Month

Why we need so much more than awareness

This morning, as part of our Autism Awareness Month Household Initiative, I asked A and O "What does Autism mean to you?"

A answered, "Autism means being unique."
O had a more difficult time. He first said "Autism is a brain disorder", which in simple terms is accurate. Then he said, "Well Autism can be annoying".
A truthful response and there are times where I couldn't agree more, so I prompted him for more information.
"Well", he said, "sometimes I don't want to do what C wants to do, but he won't stop talking about what he wants to do".
To which I responded, "That sounds like C just being a little brother... don't you do the same to A?"
Then he said, "Well, it's annoying because he wakes up really early and wakes me up".
"Hmmm, sounds like that is just part of who he is, not his Autism".
"I like playing with C -  and he is funny".
Again, I said "Sounds like that is his personality. You know O, it sounds like you've got it all right, and I am proud of you".
O, of course looked at me like I had 10 heads. He thought he failed miserably, but the reality is, everything he listed wasn't about Autism. It was all about C, and who C is - Not how Autism defines him. 

I think those of us who know Autism first hand also know that it is not just awareness that we are looking for, we want acceptance, we want understanding, we want the stereotypes to end. Autism is not the same for everyone. It is a Spectrum Disorder, it doesn't have a defining "look", it comes in all ages, shapes and sizes. It affects each person differently. C speaks, he smiles, he laughs, he tells jokes. His jerky movements and flapping hands indicate his happiness. His persistence is admirable, his opinion is always known. Some of these traits are not Autism at all, in fact they are more likely just part of his personality. His Autism isn't his defining trait, it is just a trait, like brown eyes, brown hair, long legs, and eyelashes that reach to the tops of his eyebrows.

This month is not just about "lighting it up blue", it is not just about spreading awareness, it is about acknowledging that people with Autism are just that - PEOPLE with Autism. They deserve the same respect, same dignity, same opportunity as you. I ask that during the month of April, you seek an opportunity to change your point of view, and try to understand Autism, from the perspective of someone with Autism. There are so many books, blogs, and articles highlighting these amazing self advocates, and I promise you - it is life altering. Here is a list of some of my favorites:
Carly's Voice
The Reason I Jump
Anything by John Elder Robison
10 Things Every Child with Autism Wishes You Knew
The Out of Sync Child
Anything by Temple Grandin


We have termed those without Autism as NeuroTypicals... we all have labels. Black, White, Hispanic, Teacher, Student, Wife, Mother, Husband, Brother - but none of those are what define us - they are just adjectives, and when we put all of our adjectives together, we hope that we can encompass the person we are striving to be. Why isn't this what we do for our friends with Autism? Why must that one thing define them? Why must it have a negative connotation? I think that most with Autism feel that they wouldn't be themselves without Autism as one of their descriptive words, but they also wouldn't list it as the one adjective that defines them.

So I ask of you, as you are out and about during the month of April, don't just allow your thoughts to veer towards Autism Awareness, allow yourself to look at all of the other positive traits that help define the person. Help others understand the value that the Autistic Community brings to the greater community. Create accessible opportunities. Understand  barriers and allow for creative thinking to ensure that those with Autism have the chance to participate in a dignified way. Remember "FAIR isn't everyone getting the same thing, FAIR is everyone getting what they need in order to be successful." And don't forget the caregivers. Sometimes we are run down, out of patience, and frankly - lonely. Let us know that even on the worst days we are making a difference, we matter, and that you care.