Talking TO our friends with autism

When you're a "neurotypical" person orbiting the autism universe, you have to keep some things in mind:

• You are more alike than different.
• Don't force your way in to their atmosphere.
• Time your entry well.
• Be respectful of their planet.  (You sure do expect them to be of yours!)
• There's nothing to fear here, but plenty to learn.  Be a careful observer.
• Know when it's time to leave.
• Make a report, and ask your people with autism to provide feedback on your observations.
• Plan frequent return visits, modifying your interactions based on information gathered.

"Grand Universe" ©2005-2014 ANTIFAN-REAL

(Caution: Do not overthink this metaphor.  I am not suggesting that people with typical neurology are human and those with autism are not.  I'm simply expanding the "Wrong Planet" concept.  I mean no offense or disrespect.)

As Good Friend co-founder and fellow autism mom Denise Schamens and I have expanded our observations of and interactions with this autism spectrum cosmos, we have gained a better understanding and appreciation for the wonder and beauty it holds.  One of the most revealing discoveries we made was while attending an AUTCOM (Autism National Committee) Conference in Milwaukee in 2010.  For the first time, we beheld live the power of those who type to speak.  Attending a panel presentation on public policy advocacy, we were surprised that most of the presenters used some form of Augmentative and Alternative Communication.  Though sometimes conveyed with great effort, their thoughts were so sophisticated.  I marveled as I observed the outward autistic symptoms of unrelated vocalizations or dysregulated movement, often while the advocate continued typing insightful feedback to questions posed.  I was at once exhilarated and ashamed.

I was ashamed because I had made assumptions about intelligence outside that room that were more likely than not untrue and harmful.  I based my assumptions on observations: slow (or no) speech, uncontrolled body movements, facial affect.  I realized after this panel presentation both how little I understood and how much more I wanted to.  My "a-ha" moment encouraged me to dig deeper and presume competence.  Talking to people with autism instead of about them or to their support person extends dignity.  Our words matter -- and so do theirs.

Seeing Wretches & Jabberers deepened my appreciation for the plight of Tracy Thresher and Larry Bissonnette and other people with communication and movement differences.  And I was encouraged to infuse this appreciation into Good Friend's staff and student trainings, as well as in my parenting of my two neurologically-diverse children.

What does that look like?  It's encouraging self-awareness in your student with autism; because in order to advocate for him- or herself, your student with autism needs to understand what he or she needs.  It's expanding your concept of communication; because for young students who haven't found their voice, you owe it to them to discover their other "tells".  It's being patient while they're learning and not rushing their communication attempts, or otherwise disrespecting or discounting their input.

What "a-ha" moments can you share with readers to be encouraging?

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 http://dignityandrespect.org.

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.