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?

A Spectrum of Friends

First, to honor the lives of the students and staff lost in the Sandy Hook community in Connecticut ...  There is no amount of explanation that will heal hearts, but we hope our prayers for the survivors and tears for the slain will resound across miles and time.

This week's topic was to be based on friendship in elementary school -- a follow-up to last week's thoughts regarding peer relationships in early childhood.  It seems now, with these budding first grade friendships forever frozen, a respectful tribute of sorts.

There are three main considerations of peer relationships in elementary school as they apply to students with autism spectrum disorder (ASD).  First, that they are a necessary part of social-emotional development and mental health.  Second, that they will exist, but perhaps to a differing depth and breadth than their neurotypical (NT) peers will experience.  And finally, that they should be specifically developed and nurtured for mutual benefit.

As we look at the determinants of quality of life for adults living with autism, we notice that connections in the community are key.  Jobs, recreational opportunities, and social/familial relationships help us, whether we have typically-wired brains or not.  Learning to form and derive enjoyment from these connections starts in elementary school.  Tony Attwood, author of The Complete Guide to Asperger's Syndrome and a world-renowned clinical psychologist specializing in the treatment of individuals with ASD, notes that the ages of 4 to 6 years are critical for motivating these early friendship skills.  While social impairment is a diagnostic criteria for an ASD diagnosis, it doesn't mean that relationships are less important to the development of someone with autism.  It helps to understand, however, that these relationships may look different than those between NT peers.

Many individuals with autism prefer to interact with people either younger or much older than they.  In the case of elementary school students, the 3rd grader may gravitate toward 1st graders on the playground; or the 2nd grader may bond with his speech-language pathologist versus his classmate.  In the case of the former, delayed social maturity may play a role, as well as a sense of competence around less-complicated unwritten social rules.  For the student who prefers to socialize with adults, contributing factors could include a penchant for specialized conversational topics (i.e., migratory patterns of birds or dinosaurs of the Mesozoic Era), an acceptance or level of patience not experienced among peers, or a gravitation to the familiar (in the instance of children receiving many hours per week of adult-driven therapies and interventions).

Whatever those early connections are, channel them into platforms for generalizing positive social behaviors.  Speech therapists can use the foundations of these friendships to seed new social skills, such as turn taking in conversation or noticing tone of voice and body language.  Since words only account for (at best) a third of our communication, "speech" skills are inextricably tied to these social nuances so elusive to our friends with autism.

So maybe elementary school-aged children with autism might not have the quantity of friends their NT classmates have, but the quality of their early friendships is immeasurable.  They are the building blocks of critical social development, eventually contributing toward peer acceptance and positive self-image.

And we should not ignore the benefit that students with typical brain development derive from these opportunities to learn, relate, and grow.  One of my son's very first friends was able to decrease his own school-related anxiety by focusing on the help he provided to my boy.  Studies on Peer-Mediated Instruction and Intervention programs have demonstrated that specifically-trained mentors achieve better academically and feel more fulfilled because of their engagement in these relationships.  They become less self-absorbed and more empathetic.  They develop leadership skills and flexibility -- traits which will eventually make them more employable, as well.

Ultimately, children with autism should have a spectrum of friends: ones they can share their special interests with, ones who help them be the best social being they can be by gently pushing development of new skills, ones they can feel competent with at their social-emotional level, and ones who accept them right where they're at, regardless of outward manifestations of their autism.  Are we as NTs any different in our need for a diverse friend base?

Collaborating for Kids

As the school year draws to a close, some of us are feeling the exhilaration of not having to prepare lessons for the summer.  Or grade tests.  Or get up early.  Others are feeling the dread of the lack of structure school provides for their children, and may be scrambling to put together a reasonable itinerary for the 10 or so weeks off.  And many of us are somewhere in-between: ready for a break, but recognizing the need for summer goals.

It's easy to lose sight of the big picture in this mad dash to the school year finish line.  We have a hyper focus on our roles as parents and educators in the home stretch.  Yet when we widen the lens, we see that the summer is the best time to collaborate for the sake of students.  Teachers are in a unique position to know what extra practice will be beneficial for the upcoming school year, and parents can reach out to gather resources and suggestions for summertime follow-through.

We know the 4th grade teacher spends some six hours a day with 4th grade students; but we also know that these 4th graders are being molded by their educators and families into adults, equipped with the skills, knowledge, and character they'll need to become the kind of citizens of whom we as a community can be proud.

The state of Wisconsin, along with 45 others, have adopted the Common Core State Standards, which are accessible for viewing by both families and schools.  Viewing these standards for mathematics and language arts might be one way to initiate this conversation between home and school about what academic concepts could use a little extra attention.

The National Association of School Psychologists published a paper in 1999 and revised in 2005 about the importance of the home-school collaboration.  All students will achieve more if we as families and schools work in partnership with one another.

During last week's World Café™-style Community Conversation on Meaningful Inclusion in Elementary School, Good Friend hosted an inspiring mix of 30 parents, therapists, educators, and administrators.  One parent commented afterward how moved she was by the commitment of the educators who were present.  The limited number of minutes in the day is sometimes a barrier to effective communication between home and school, but we must not lose sight of the fact that we are all on the same team.

Work hard to collaborate for the benefit of your students this summer.  And then tell us what steps you've taken together to help them run the race!  Your comment could earn you a Good Friend prize!