Saturday, April 3, 2010

Three Reasons Why Autism Awareness Matters

We’re taking a little break from our regularly scheduled programming her on Pens Fatales to talk about something that is near and dear to us -- Autism Awareness. Two of us Pens have families affected by autism. We are not alone. Millions of families are dealing with autism. Countless more are touched by the struggles that their friends and families are going through everyday.
April is Autism Awareness Month. Here are three reasons why Autism Awareness matters.
Reason #1 Because Autism Is More Common Than You Think
1 in 110 children have autism. Boys are 4 times more likely to have an ASD (Autism Spectrum Disorder) than girls.
These rates are rising. There has been lots of speculation and debate as to why, but in the end, what we need is hard scientific research into the causes of autism if we ever hope to stem the tide. Large scale research like this requires funding. And funding requires advocacy. And advocacy requires awareness.
Reason #2 Because Autism Isn’t What You Think It Is
Like most of us, the only image I had of autism growing up came from the movie Rain Man. When my son was in the process of being diagnosed with classic autism, I resisted the feedback that the doctors and therapists were giving me, in part because of this idea of what autism was. But, he is affectionate, I thought. He is fun. Hell, he is funny. These characteristics were at odds with the picture I held in my mind of a person with autism.
Autism is characterized by a difficulty in communicating (both verbal and nonverbal communication), difficulty in social situations, and unusual behaviors. There are usually sensory issues. The severity of difficulty in each of these areas varies with individuals. 
Autism is a spectrum disorder and people living with it fall all over the spectrum. The biggest lesson I have learned getting to know people with autism is that there is no one “autism”. Every one of us is an individual, with a distinct personality, an arsenal of talents and a set of challenges. This includes people with autism. 
My son, Jack, doesn’t see the world the way I do. He is obsessed with the mechanics of spinning things--fans, car tires, planets. He is fascinated with cars and trains. This is Jack’s image of a car.

 And these are the twenty one other identical pictures that he drew that same night. 

Seeing the world differently isn’t necessarily a bad thing. Go here for a far more compelling argument about this than I could ever articulate. It’s being able to translate your thoughts and ideas into practical ideas that the rest of the world can understand that is the difficult part, which leads me into right into...
Reason #3 Because Autism Treatments Help
There is no cure for autism, but treatments do help. They can help people become more expressive, more involved. The right treatment--and what that is seems to vary from person to person--can allow someone with autism to reach their potential. 
ABA (applied behavioral analysis) Therapy helped Jack to learn how to talk. While he doesn’t understand the point of conversation, he now has much less difficulty expressing his thoughts and feelings. Through awareness and advocacy we can help bring more of these much needed therapy programs into our communities and into the lives of those who need them. Because in the end, what is good for the autism community is good for all of us. 


Rachael Herron said...

Beautifully worded post, Adrienne. I think what's interesting is that you nailed us as a generation -- before our generation started having kids, I DID see autism as merely Rainman, and not much more, and now I see it as real children who are fast growing up, who are funny and wonderful and have nothing to do with Hollywood and toothpick/card-counting. Kids with great parents who are great at sharing info so people like ME can learn. Thanks for the Awareness post.

Juliet Blackwell said...

Thanks for this, Adrienne. It is a beautiful post, and underscores the need to understand all the complexities inherent in autism. My favorite line: "Seeing the world differently isn't necessarily a bad thing." Indeed.

camille minichino said...

Thanks, Adrienne.

One of the most insightful things in this post: a child with autism may learn to communicate long before (if ever) he learns its value.

Our 4-year-old grandson receives therapy that helps him immensely. He's just learning simple mono-syllabic words and sometimes seems to "connect" but it has been a very tough road. Tough roads are always easier when there is community and awareness.

Tom Neely said...

Well said sweetheart :^)

L.G.C. Smith said...

Adrienne, thanks for this. As the other one of the Pens with an autistic child in my family, I'm right there with you as far as the importance of autism awareness. Kids like Jack and my niece, Nora, don't need anyone's pity. They're good kids who need different kinds of input and interaction to help them make the most of life. Their lives may be a little (or a lot) different from the average, but they are every bit as unique, valuable, and important as any other child's.

The parents of autistic kids, on the other hand, may need some pity now and then. Always compassion, certainly. As Camille said, it can be tough, and I think it's tougher for parents than the kids a lot of the time. Parents of autistic kids need community and support, too. Adrienne, you and Tom are doing a great job. :)

Unknown said...

I would guess that every reader has at least one friend/relative who falls into this spectrum. I know we have four.

Jack is lucky to have parents who see his world view as a difference rather than a disability.

Adrienne Bell said...

Rachael - Thanks. There are all kinds of people on the ASD spectrum, from moderate to severe. I just want us to become aware that they are People first and foremost.

Juliet - Thank you. I love when Jack is able to show me something I've never seen before. He is able to pick out the details I gloss over. This last trip to Disneyland we asked him what his favorite part of the trip was. He answered, "Woody, Buzz Lightyear...and the two fans in the ice cream shop." Two ceiling fans. But for him they were the highlight of the trip.

Camille - I am so glad that your grandson is benefitting from therapy. Language is a tough thing. It's such a central part of us writer types and because of that it breaks our heart when we see our loved ones struggle just to verbally express their needs. Over the last 2 years I've learned that there are lots of ways to communicate.

Lynn - Thank you. I'm lucky to have the friends and family that I do.

Lisa - I am sure of it. Our extended family has 3 people on the spectrum. This is 1% of the population growing up now. It's huge.

Sophie Littlefield said...

Thanks Adrienne - it has been a great pleasure to get to know the boys and to learn from them and you.