Autism: an explanation -- not an excuse

Even though Denise Schamens and I have been providing Peer Sensitivity Workshops through Good Friend for nearly six years now, we are still often met with resistance about explaining a classmate with autism spectrum disorder's (ASD) differences.  And we respect that.  But admittedly, it makes us a little sad, because we've seen the benefit talking about autism early conveys!  Yet when we learn the resistance is due to a misunderstanding about the intention of our services, we like to clear the air.

For example, a school's administration was encouraging parents of students with ASD to sign a consent form allowing us to contact them to discuss their child.  A spontaneous discussion began among the parents of students identified through their IEPs has having autism who had received the consent form.  While some families were all for the disclosure for the sake of creating positive interactions between students, one family in particular was discouraging others, suggesting that we would offer "excuses" for the "bad behavior" of students with autism.

Indeed, most children (and adults, for that matter) have some undesirable or bad behaviors, whether or not they have ASD.  And as caregivers, we have to strive to redirect or otherwise extinguish those behaviors, because we recognize them as chosen.  Yet in learners with autism, many of those "behaviors" are not chosen at all.  They are a product or a side effect of the differently-wired brain.  In other words, when similar undesirable behaviors are seen in a neuro-typical 5-year-old and an 8-year-old with ASD, we have to distinguish between the meaning of the behaviors and act (or better yet, preempt) accordingly.

When students with ASD have a functional behavior assessment, we caregivers have a head start in our ability to understand and explain unexpected behaviors.  Because autism is an "invisible disability", a neuro-typical student is not likely to associate a peer's unexpected behavior with a differently-wired brain.  But once we provide an explanation about autism and the diverse way that student experiences the world around him, the other students will no longer be mystified about the behavior.

It's not to say that an unsafe behavior like hitting would become acceptable.  Certainly, regardless of the communicative intent of the behavior, unsafe actions have no place in a classroom.  But explaining to the other students who've found better ways to cope with their frustrations or anxieties that there's a whole team of support people (educators, therapists, etc.) working together to teach the student with autism other coping strategies goes a long way.  Typically-developing peers could go from being hesitant or even fearful to being cooperative and helpful.

What have you learned about autism through the behavior of your person with ASD?

Autism Awareness Activities in Elementary Schools

Last year, I was so impressed by the efforts of the Swanson Elementary community in Brookfield, Wis.  I was certain they were an anomaly in the education universe.  But I am glad to report I am WRONG!  There are other metro Milwaukee schools (and you likely know of one in your area) capitalizing on the opportunities Autism Awareness Month affords for the building of a culture of acceptance.

What's unique about Cushing Elementary in Delafield, Wis., is that the staff (namely, Occupational Therapist Teresa Wozniak) has an annual plan to address peer awareness throughout the school year.  To complement her work, which includes reading books and answering questions about students with diverse abilities, autism parents Mary Day and Karen Cain started planning additional activities for April way back in the fall.  Here's what they did this month:

• Displayed original posters throughout the school with helpful tips about autism, and draped a banner across the school's entrance.
• Decorated an informative bulletin board in the foyer showcasing famous people who have autism.
• Asked students to write letters of support to their classmates with autism to demonstrate how much they care.
• Organized a staff luncheon of appreciation.
• Had student leaders make blue puzzle piece pins for all school community members to wear. 
• Recommended all students wear blue on April 17th, following two days of Good Friend Peer Sensitivity Workshops by grade level.

This multi-modal, wrap-around model of autism awareness fosters acceptance and empathy, and moves autism from the shadows of understanding the the positive light of social relatedness.  Teachers at Cushing incorporated this concept into their curriculum, leading mini-lessons on the topic which could be tied back to learning standards.

Karen said, "I can't tell you how many times, while I have been at school, I have been stopped by staff to tell me how happy they are and love what we have done."  We were glad to be a part of it!  And we could tell by the insight of the peers and the thoughtfulness of their questions that they were learning invaluable social-emotional lessons.

What did your school do this month to promote autism acceptance?  What will you plan to do for the 2013-'14 school year?

I speak autism!

As part of Good Friend's Peer Sensitivity Workshops, Denise and I conduct phone interviews with the primary caregiver and most relevant staff member so we can get an understanding of how our student subject "ticks".  We have a prescribed form we go through, typing answers and sometimes delving deeper into comments as we go along.  I often find myself chuckling at many of the described behaviors.  Clearly, the interviewee doesn't find these eccentricities nearly as charming as I do.  As a result, I can sense the parent's or teacher's confusion on the other end of the call about my lighthearted giggle.  Sometimes, I have to explain.

I have two children with ASD, ages 13 and 11.  And I've met dozens and dozens of individuals with autism through my experiences, both personal and professional.  As I make connections about these amazing people and consider the factors driving many of their behaviors (preferences, aversions, repetitive acts, etc.), I can't help but feel blessed to know them and understand the meaning of these behaviors.

For example, I've heard about so many children with ASD, boys in particular, who do not like babies.  I've come to understand that babies present a host of unpredictable sensory experiences (i.e., loud crying, smelly spit-up and messy diapers) that make being in their presence anxiety-provoking for these guys.  This is true for my own son, who has several young cousins -- many of whom have gone rather "unappreciated" by my boy until, perhaps as preschoolers, they're ready to show some interest in his favorite topics.  So these moments of his endearingly awkward interactions flash before my eyes as I'm talking to these teachers and parents, and I have to smile.  Sometimes out loud.

But making connections and understanding how people with autism are wired doesn't mean that autism is my native language.  I speak it because of cultural immersion, but I wasn't born with autism in my body.  So while this immersion makes me fluent in autism, it doesn't make a true expert.  Certainly, I can interpret autism for neuro-typicals who don't speak the language themselves, but the best way to understand autism is to interact with the experts.

Not sure why your person with autism behaves in a specific way?  ASK (politely in a moment of calm and clarity)!  You might be surprised about the insight you gain and the level of self-awareness your person has.  Little or no reliable means of communication yet?  Play detective!  The Iceberg Model of Autism (Eric Schopler, TEACCH, 1994) reminds us that the observable behavior is just the tip of the iceberg, and what's beneath those acts is generally a combination of environmental contributors (sensory perception, social or processing differences, etc.).  Listen actively.

What discoveries have you made as you've learned the language and culture of autism?

The Power of Compliments

This week, I'm going back to Tony Attwood's presentation ...

So many of the things he said during last week's seminar resonate beyond the population of individuals with ASD.  He spoke of the importance of compliments in relationships, particularly as they apply to romantic relationships.  In fact, nearly 15 years ago, he worked with Carol Gray to develop a prescription of sorts for compliment formulation and delivery for adults with ASD, available through this download.  The argument for the necessity of such a manual is rooted in both the complexity and the benefits of compliments.

submitted by Gagandeep

The definition seems straight-forward enough:

com·pli·ment/ˈkämpləmənt/

 

Noun:

A polite expression of praise or admiration.

But the practicing of compliment delivery is littered with subtleties that sometimes we neuro-typicals take for granted.  Questions arise:  How many compliments should I give in a specific time frame?  And what should I compliment someone on?  Does it matter if the compliment is given to a man or woman?  Are certain compliments inappropriate to give to a stranger, but okay for a close friend? ... and many more.

When we were developing Good Friend's curriculum for Peer Sensitivity Workshops five years ago, we were inspired by Ellen Sabin's inclusion of an exercise in The Autism Acceptance Book that encourages classmates to compliment each other.  When we practiced this in schools, we were dismayed by how difficult it was for elementary school-aged students to understand and deliver compliments.  They, particularly the girls, have little trouble complimenting an article of clothing or a hairstyle, but speaking about character or skills in a kind way is clearly not an inherent ability for most students.

Imagine how much more difficult it can be, then, for these NT peers to compliment their classmate with ASD!  With the societal disorder of seeing differences as deficiencies, looking for the expressions of praise or admiration for a person with autism seems foreign.  But when given the proper focus on a person's strengths instead of his weaknesses, the compliments flow freely.  And since Tony Attwood notes that people on the spectrum crave positive feedback and are desperate for respect and value, we who surround these individuals should be lavishing compliments on them as well.

What was the last compliment you gave your person with ASD?

"Oh yeah, you blend."

A family's journey in dealing with autism is a highly personal one.  There are stages of grief, not unlike those brought on by the death of a loved one, that follow a diagnosis of autism in a young child.  The timeline and order of those stages are different for everyone.  There are people we meet along the journey: some of them walk with us, some point us in the wrong direction, and others give helpful navigation tips.  I don't want to pass judgment on anyone's journey.  It is our own.

Every now and then, I have the privilege of talking to a parent who is "stuck".  They're having a hard time moving through a certain stage or preventing themselves from returning to it; it's become quicksand, and they're sinking.  Ignoring families at this time in their lives is cruel, so we want to extend a branch to them to hold on to and maybe even wrestle them free, if they're ready.

Denial is such a common, natural reaction to so many facets of an autism diagnosis and raising a child with autism.  We want to believe our child is or will be "fine" -- that the symptoms of autism will subside, and he or she will eventually fit in seamlessly with his or her peers.  The rarity of this phenomenon isn't as discouraging as the light of its hope is energizing, so it's constantly drawing us in.  And hope is a good thing!  We should always hope for the best for our children, expect much of them, and accept nothing less than a coordinated team working together toward lofty goals.

Along this journey, we have to access new tools.  Each leg is different, and requires different supports.  One of the supports our families need is social.  Children with autism need social understanding and social skills to function well in inclusive settings, and their neuro-typical peers need specific autism awareness and acceptance training so they can support their classmate with autism.

Yet we have encountered families during our Peer Sensitivity Workshops who believe their child is indeed blending with their class, and does not want his or her peers to know about autism and how the diagnosis relates to him or her.  There have been times when such families would not offer consent for the inclusion of their child with autism in the training, but other families in the same grade level with children on the spectrum have.  (See our past blog posting on that.)  So we proceed with the training, speaking only about the student for whom we have consent.  More often than not, Denise and I can tell within minutes who the other child on the spectrum is.

And, for me, it always brings to mind a picture from My Cousin Vinny.  Joe Pesci's character (Vinny Gambini) looks over at Marisa Tomei's Mona Lisa Vito, in her black pleather miniskirt, and comments that she "sticks out like a sore thumb" in the small Alabama town they're in.  She eyes him up and says sarcastically, "Oh yeah, you blend."  It's an irreverent comparison, but can be applied to the behavioral and social differences of some intermediate elementary students with and without ASD.

Most of the time, our children with ASD don't blend in with their classmates.  They have different ways of self-regulating, initiating (or not) social interactions, and processing and responding to sensory input. To ignore these things -- to deny these differences -- won't make them go away.  Children often devise their own explanations for unexplained behavior, and you can imagine where that might go.  Our children with ASD may not blend, but they don't have to be sore thumbs!  We educate typically-developing peers so even when they don't blend, they mix well.