World Autism Awareness Day

World Autism Awareness Day. 

Today’s post is not a personal story so forgive the reprieve…just wanted to speak for a moment about World Autism Day which was Thursday.  I’ll be back to personal stories on my next post!

Thursday was World Autism Awareness Day.  The day was established by the UN in December of 2007, and was first celebrated on April 2, 2008.  I’ve heard recently criticism about this day – from “how does one day change anything?” to how does “lighting it up blue” help my child to “I’ve worked hard to mainstream my child – I don’t want to highlight how my child is different.”  This day means different things to different people.  But to me, this day is about more than just a commemorative day, about more than a blue light bulb, and certainly nothing about highlighting differences. 

On a very macro level, World Autism Awareness Day increases visibility about the growing number of individuals diagnosed with autism.  Back when Coleman was born, the stats were that 1 out of every 125 children had autism.  When the UN passed the resolution for World Autism Awareness Day in 2007, the stats had climbed to 1 in every 88.   Today they are at 1 in 68.  This is a crisis, and we need awareness now more than ever.  Autism Awareness Day draws in resources, brings the conversation to the forefront of media, and amplifies the call to action.  This year, the United Nations General Assembly chose employment as the theme of World Autism Awareness Day, appealing to businesses to make concrete commitments to employ people on the spectrum.  That appeal will take shape in corporations for months and years to come.  On a micro level, World Autism Awareness Day brings to the surface the very real, very challenging stories of people living with Autism.  It provides a forum for personal accounts of defeat and triumph (like ours) and helps the world to understand just a little bit more what life is like for some individuals and families living with Autism. 

I am personally grateful for this day, every year, for a variety of reasons. 

·         I get to write this blog, without people saying “Who really gives a crap?”

·         My girls get to be heroes at school for a day – all their friends wear blue, everyone cheers Coleman on, and they get to gloat in the joy of having an Autistic brother.  Yes, I said gloat.

·         People at my office wear blue, even though I didn’t ask them to, and they stop by and say “Got my blue on for Coleman!”  And it makes me happy that they remembered.

·         Friends I don’t see very often text me and say “I’m thinking about your family and Coleman today” and I’m so glad they are thinking about us, but grateful they are not actually with us and not witness to this morning’s meltdown over the girls putting on their jackets to leave for school, heaven forbid, while Coleman was in the bathroom. 

·         Coleman gets to be the Big Man On Campus for a day, even though he doesn’t understand it.  Kids throughout the school are walking down the hallways, yelling out to him “This blue is for you Coleman!!”  And I feel happy for Coleman.    

·         There arrives a plethora of articles in newspapers and online about new information and progressive research into causes and treatments of Autism and that gives me hope for Coleman and for our society as a whole. 

·         I go to Dunkin’ or the supermarket or to the bookstore, donning my Blue Autism Jacket, and people stop and say “I’m wearing blue for Autism today too.  My nephew/brother/son/sister/neighbor has autism and I’m wearing it for her.”   I hear touching stories about other families going through the same madness that we are.  And it reminds me that we are not alone.

But mostly, I am grateful for Autism Awareness Day/Month because of the attention and focus it brings to this growing population.  And that attention leads to better research, new medical breakthroughs, novel approaches to recurring problems, and hopefully, a slow but steady improvement in the lives of people living with autism. 

Coleman will personally benefit from all of those things, either today or in the near future.  For example, according to the US Bureau of Labor Statistics, working-age people with disabilities are employed at about 1/3 the rate of people without a disability.  (The Arc – the national leading organization for people with intellectual and developmental disabilities - claims this unemployment rate for this group is closer to just 15%).  There are many reasons for the low rate, but changes are underway, some mandated by law and some taken on by choice, which are improving employment opportunities for people with developmental disabilities.  For example, resources are being allocated to teach young adults via inclusive community models of employment versus sheltered, segregated workshops.  And the UN’s call to action this year for companies to commit to finding ways to employ those on the spectrum will prompt even greater changes.  Already companies like Lee and Marie’s in South Beach, Miami, Puzzles Bakery and Café in Schenectady, NY, Zendesk in San Francisco, the Hyatt Group, and many other companies across corporate America have embraced this growing acceptance.   I am grateful that Coleman will one day reap the benefits of all of this progress.    

In another example, a recent landmark study done at the UCLA Center for Autism Research and Treatment argued for a shift away from traditional socialization training when trying to teach kids on the spectrum about social interaction.  The study showed that instead of adults working one-on-one with autistic children about how to enter a playground game or conversation, they chose a few typically developing classmates and taught them strategies for engaging children with social difficulties.  (The classmates did not know the identity of the child with the autism).  Remarkably,  teachers reported that those students whose classmates received training – including those who themselves received no social skills counseling – spent less time alone on the playground and had more classmates naming them as friends, compared to those who received only one-on-one training or no intervention.  In addition, their teachers reported that the students with autism showed significantly improved classroom social skills following training of their peers. By comparison, the teachers noted no changes in the social skills of children with autism who received one-on-one coaching without any training of their classmates.   This is real, impactful information that can be woven into education plans immediately.    

Finally, in classrooms of typically developing children across the country, conversations are starting to happen.  Autism Awareness Day prompts discussions and questions that will ultimately lead to better understanding of peers with developmental disabilities.  The emphasis is not to highlight differences, but instead highlight challenges and how developmental delays impact learning, socialization, and everyday living skills for people on the spectrum.  Those challenges are different for each child, and the discussion in classrooms, I hope, includes that message.  In the past, these conversations were hushed, and you didn’t talk about the quiet kid in the corner that seemed ‘different’, or the one that was pulled out of the class frequently for who knew what.   But the conversation that is happening now promotes a healthy understanding of disabilities.  It is not a conversation to isolate or categorize individuals - it’s a  conversation that instills empathy, to help kids understand their differences, not to fear or mock them.  Autism Awareness Day provides the opportunity for that discussion and that is as important as any research or study.   

World Autism Awareness Day is only one day.  But it’s a place to start.  “The first step toward change is awareness. The second step is acceptance.”  (Nathaniel Branden).