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?

Pretending to be "normal"

Whether your neighborhood hosted trick-or-treaters already, or is gearing up for the swarm of costumed kiddos later this week, this is a time when many of us celebrate our children pretending to be other than who (or what) they are.  Sometimes the costumes are so elaborate or concealing, we cannot recognize our pals.  And some characters even assume their costumed persona while at the party or collecting candy.  There is, of course, no expectation that such charades will continue past Halloween.

Unfortunately, some individuals with autism feel as if we neurotypicals are asking them to engage in a perpetual charade.  Author and advocate Sarah Stup writes, "With too much asking us to be normal, we feel like impostors."  While I loved Miss Montana (2012) Alexis Wineman's platform for the 2013 pageant, "Normal is just a dryer setting," I recognize that as a parent I once had a goal for my children with ASD to be "normal".  I wanted them to be unrecognizable from their peers in the classroom.  What a foolish and narrow-minded aspiration.  One I'm glad the parents of Thomas Edison, Albert Einstein, and other great minds, whose genius was inextricably tied to their suspected autism, didn't hold too tightly.

I am not suggesting that we don't push our children to be the best they can be.  Rather, I am insisting we respect who they are.

Consider how we all have to differentiate our choices based on environments and audiences.  When you're in the library, you respond to your environment differently than when you're at a parade.  When you're dressing for the symphony, it's likely in more formal attire than for your son's soccer game.  When you're interacting with your 8-year-old child's friends at her party, you adjust from the way you were interacting with your colleagues at work hours earlier.  Some of these adaptations are uncomfortable for us, and we breathe a sigh of relief when we can be "ourselves" again with the ones we love on our own "turf".

Yet those are all environments and circumstances that we choose.  Granted, we have more autonomy as adults, which is developmentally appropriate.  Naturally, children have less authority.  But they should not have less entitlement to being who they are.

If you want your child to be in a Scout troop to enhance his or her social ability, be sure your child has adequate support and preparation to participate in manner consistent with existing function.  If you want your child to be part of the extended family portrait, allow him to wear clothes that he prefers.  If you believe your child with autism should attend her cousin's wedding, don't expect her to be able to sit for an amount of time beyond what she's demonstrated to be comfortable for her.

These outings are all lovely ideas, and may have real benefit.  But think inclusively: What can you share with event coordinators that might make the event better received by everyone?  What adaptations can you make to respect your loved one with autism's limitations while leveraging her strengths?  Because asking your loved one with autism to pretend to be "normal" (whatever that means) is just not dignified.

So enjoy the extra-ordinary masquerade that is October.  But if you're still asking your student to don a figurative mask beyond the 31st, examine your motivations and appreciate the real person behind the facade.  And encourage others around him to do so as well.  Together, you can help him be the best him he can be!