Monday, November 25, 2013

"I want to see!"

Being the eldest of six children had its advantages when growing up.  Until ALL of my younger siblings eventually surpassed me in height, I could often see things before they could: the first snow falling outside our window, the next float coming down the parade route, the favorite animal exhibit at the zoo.  Invariably, one of my brothers or sisters would shout out, exasperated, "I want to see!"  Then we'd step back, or bring one of the little ones up higher so he or she could get a better look.

That was an accommodation we'd make, but sometimes we wouldn't think about it until after the child spoke up.

Temple's book was also made
into an HBO original movie.
So many people with autism have told us they're visual thinkers.  Instead of thinking in language as most of us neuro-typicals do, they think in pictures.  This isn't to say that all people with autism prefer pictures to language, but it is reasonable to assume, in case you either aren't able to ask or your person with autism isn't able to reply in a way you understand (yet), that visual supports are helpful for people with autism regardless of their age or verbal abilities.

You don't have to be a speech therapist, special education teacher, or autism support professional to create and use visual supports.  Granted, to implement this evidence-based practice to fidelity, you have to do your homework.  But let's say you're a parent getting ready for the weekend ... or a grandma trying to figure out how to communicate with her grandson ... or a student wanting to invite a friend to a party.  You can use visuals to make life better for each of you!

Think of the ways you use visual supports already.  Do you have a calendar on your wall somewhere?  If you're writing down appointments and events, you're using a visual support.  Do you have a list of things to do or buy?  Also a visual support.  How about an evite?  Another visual support!  They're good for organization, for independent functioning, and for multi-sensory approaches to learning.  And that goes for everyone.

So instead of waiting for your person with autism to ask for a visual support, start creating them!  And once you're using them successfully, think of other areas where this could be helpful -- a laminated check-off sheet for morning routines, a Time Timer for timed activities, breaking down multi-step projects, etc.).  Don't think that the practice is limited to PECS, but think alerts on iPads and notes in pockets and signs on doors.

Do you have a favorite way you've used visual supports successfully?  Please share with us and get the ideas going!  (And if you haven't been clicking on the links embedded in this posting, you might want to go back and start there.)  Meanwhile, I have to run.  I have to make a visual support that's going to show my son how well he's doing with his despised (but necessary and helpful!) exposure therapy.

Monday, November 18, 2013

THIS is autism!

As a parent of two children with autism spectrum disorder, and as a professional who's spent the last six years working toward autism acceptance in schools, I found Suzanne Wright's blog posting, "Autism Speaks Point of View" for last week, incredibly offensive.  Apparently, so did hundreds of others, whose comments at first were allowed on the website just below the posting.  Those have since been removed and comments are no longer recorded (there).

Not surprisingly, it's creating a backlash.  Throughout the week, individuals with autism, parents, and others who value the dignity of those with autism rejected Wright's depiction of families who have a loved one with autism as "not living" but "existing" in "despair" and "fear of the future".  As I read to my daughter Wright's horrible characterization of raising children with autism, which was to be a rally cry for Autism Speaks' policymaking summit in Washington, D.C., she crinkled her face in confusion.  I raised my voice in indignation.  This is NOT autism.  Not for us.  Not for our family.  Not for Good Friend.

our family in 2012
Perhaps the Wrights, co-founders of Autism Speaks, have been tainted by negativism.  In their desire to "not sugarcoat the impact of autism" (one of the eight guiding principles of the recent #AS2DC summit), maybe they've lost sight themselves of the gifts, the talents, the dignity of children and adults (who should not be lumped in with minors) with autism.

By virtue of our Awareness-Acceptance-Empathy mission, Denise and I have had the honor of meeting 100 children with ASD and their families (if only over the phone) since 2007.  According to a few of them, THIS is autism:

  • Ben loves NASCAR.  He demonstrates his appreciation of his peers' interaction by drawing them pictures.
  • David has an amazing memory.  His classmates also know that he's likely to beat them in a game of HORSE at the basketball hoop.
  • Paige is such a quick learner that she figured out how to write her own Social Stories.
  • Reid is quite the movie buff.  Ask him about producers, directors, and run times, especially about the Avengers movies, and he'll wow you!
  • Avery's family watches "Wheel of Fortune" together.
  • Nathan is learning to use words to communicate verbally.  And even though he's in kindergarten, he's already reading at a 2nd grade level.

Yes, some of these parents and grandparents needed resources.  We were glad to give them ideas.  Yes, some of them were tired.  We were glad to encourage them.  Yes, some were frustrated.  It was our pleasure to offer them hope.  That is what it means to belong to a community; not to make others lament our existence, but to pull the little red wagon, as in Margaret Katter's poem, when someone needs a break.

Little Red Wagon, by Margaret Katter 
Some days we skip along,
pulling our red wagons with great confidence –
so full of energy that the load seems light. 
Some days the load seems heavy
and we need someone to help us
pull our wagons over the bumps in the road. 
Some days we are just tired.
We sit in our wagons and let someone else
pull us along for a while. 
As you think about yesterday, and make plans for tomorrow,
keep in mind that there will be times when you can help
pull someone’s little red wagon for a while. 
After all, helping to pull each other’s little red wagon
is what makes it possible
to face the challenges the day brings.

I applaud the effort of bringing national attention to the needs for supports and services that many individuals with autism and families and caregivers require, but cannot access.  But I refuse to surrender the pride I have in who my children are today, who they were yesterday, and who they will be tomorrow for that national attention.  And I certainly will not tarnish the glow of the dozens of shining faces of autism we've connected positively with thousands of their peers.

I believe that change in national policy will happen when autism awareness, acceptance, and empathy pervade legislatures.  When each of us as advocates show those who don't understand how worthy of support people with autism are, we promote compassionate, effective responses.  Please continue to live out Good Friend's mission wherever you are.

Monday, November 4, 2013

Extending Dignity

So much as happened near and far in the past few days that remind me how much work we have to do  as an organization and as parents, and how much has already been done by so many autism advocates.  In the category of earth-shaking accomplishments, take Larry Bissonnette and Tracy Thresher of Wretches & Jabberers fame into account.  Today, these are internationally-known, world-traveling gentlemen who type to speak; but they were not presented with such an opportunity and training until they were well into adulthood.  They were presumed incompetent, unintelligent, and consequently institutionalized before they were able to relay their thoughts.  Through Gerardine Wurzburg's beautiful and powerful documentary, and the international speaking opportunities it continues to generate, Larry and Tracy are encouraging societies to extend dignity, presume competence, and realize that intelligence does not always look and sound the way we expect it to.
Find out more at

Shouldn't we be extending dignity to every human being around us, regardless of perceived intelligence?  Sometimes it seems as if only those who express their cognitive ability with reliable spoken language deserve such treatment.

I was encouraged by the hearts of the leadership and a select few parishioners at an urban church here in our area over the weekend.  Though this is a relatively small church, it has quite a few attendees with autism spectrum disorder.  One of the young men was ignored by a neurotypical peer recently when he attempted to make conversation, and that spurred the leadership to learn more about ASD so they could practice awareness, acceptance, and empathy within their own community.

I was discouraged by the words of a mother of adult twins with ASD, who described them to ABC News in this way: "In the spectrum, they're at the very bottom."  Now, I am more than willing to extend benefit of the doubt when it comes to out-of-context news editing.  But it made me sad to think that because New York City Marathon runners Jamie and Alex Schneider couldn't find a way to communicate verbally, they were "at the very bottom" in any way.  It seemed undignified to me, and I doubted they would describe themselves in a similar fashion, if empowered with the tools and training Larry and Tracy have been.

What's the point?, you ask.  Extend dignity.  Each of us is doing the best we can with the tools we have.  We all do better when we know better.  Assume those around you will do the same.  And do your best to bring them the tools that will inspire still more community members to extend them the dignity they deserve.