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?

"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.

Segregation and Self-Perception, Part 2

As parents, teachers and administrators, we all need to be mindful of the message we're sending to students.  In instances where students with special education needs are set apart, or segregated, from their typically-developing peers, we have to understand the perception of the students involved: Those with Individual Education Plans (IEPs) who are sent to an alternate placement should know it's for their benefit, or they might begin to feel inferior to their peers.  Those who see their peers with IEPs in separate classrooms should know those students are just as worthy of respect, compassion, and attention as they are.

We teach by example.  If a general educator consistently deflects the needs of a student with an IEP in her or his class to the support person (i.e., a educational assistant or a special education teacher), or groups the students with challenges together and separates them from the other students within the same classroom, social habits are likely to follow suit.  These students will become isolated from their peers on the playground, in the cafeteria, and on the bus.  They will not be included in a homogenous population.  Or worse, they could become targets of relational aggression.

Consider what happened with Jane Elliott's blue eyes/brown eyes exercise more than 40 years ago.  In the wake of the 1968 murder of Martin Luther King, Jr., and in an effort to get her 3rd grade students to understand the injustice of segregation and/or racial prejudice, she conducted a two-day psycho-social exercise.  The impact of this role play, and the one captured on film two years later, has resounded for decades.

On the first day, she convinced her class that the children with blue eyes, like herself, were superior.  The brown-eyed children were asked to wear identifying collars so they would be recognized from a distance as having brown eyes.  Before long, the students with brown eyes felt inferior socially and academically.

The second day, Ms. Elliott flipped the rules, confessing to the students that she'd lied the previous day about blue-eyed people being better than those with brown eyes.  The latter gave their collars to the former; and while the brown-eyed children were more merciful on day two than the blue-eyed children were to them on day one, it was still an awful day for everyone.  By the end, when Ms. Elliott told the students the truth, that they were all equal, the students despised the collars, the lesson, and prejudice altogether.

If this alteration in self- and peer-perception happens in a matter of hours, what do you suppose happens over months and years when we separate children with special education needs?  Of course, we have to provide the kind of support that will help our students to learn best; but can we provide it more seamlessly?  Can we design an environment that provides universal access to learning opportunities, without some of the barriers to those who process sensory input differently?  Can we start a club based on a student with ASD's passion that allows him to showcase his core competency -- even expertise?  Can we encourage educational assistants to act as social bridges, sharing practical tips to foster interaction between students with ASDs and their typically-developing peers?

I know we can.

How will you improve the culture in your community to be more inclusive of students with ASD?

"Be prepared!"

(adapted from our Aug. 2010 newsletter)
We are indeed borrowing that famous motto of the Boy Scouts of America. Whereas they’re reminding their boys to be prepared for whatever wilderness adventure or lifesaving opportunity they might encounter, we are encouraging schools and families to be prepared for whatever classroom situation they might encounter.

When considering the research of Dr. Connie Kasari (UCLA, 2009), we realize that preparation is a critical intervention for students’ success. Kasari’s study of students with autism spectrum disorder (ASD) in inclusive classrooms led her to conclude that preparing the environment (the staff, the students, and the physical readiness of the space) to receive a student with ASD is perhaps more important than social skills training and a one-to-one aide for the impacted student. (See The Orange County Register article, “Peers are key for autistic kids, researcher says”.) This requires a more coordinated effort on behalf of the school and family, but has ultimately proven to result in better outcomes.

Many schools now are moving into a positive behavioral intervention and support (PBIS) approach to improve their campus climate.  Social emotional learning is gaining momentum as a paradigmatic shift in education.  As administrators invest in the relational atmosphere of their schools, they see decreased referrals, improved academic performance, and better unity among students.

This applies to Good Friend’s services as well.  Administrators of public schools in excess of 88 students can be statistically assured that there will be at minimum one child with ASD enrolled. That being the case, it is likely that the least restrictive environment for that student will be an inclusive classroom. And the way to prepare that environment is through education.

Good Friend offers staff in-services, which last from 60 to 90 minutes, at a fee of only $100* (*additional expenses are associated with travel beyond 75 miles of Waukesha, Wis.).  And for schools in southeast Wisconsin that book their staff training by October 30th and wish to participate in an independent University of Wisconsin-Whitewater research study, there is NO FEE.  The in-service is applicable for all staff, from speech therapists to physical education teachers.  The best part is the service is performed right at the school — no need for travel expenses or substitute teachers. The material covered ranges from the medical diagnostic criteria to some best practices in education.

Student services include general assemblies (K-9th grade, but best with no more than three consecutive grade levels per service), Peer Sensitivity Workshops (K-5th grade), and Individualized Classroom Presentations (6th-9th grade). Schools that are using systemic PBIS or similar pro-active interventions will find that the Awareness-Acceptance-Empathy® model is a natural programming extension and reinforces those principles. General assemblies are suitable for schools with a number of students on the autism spectrum or when information does not need to be student-specific. However, the PSW is a better format for presenting personal explanations of particular behaviors to a targeted age group.

If you need some guidance to determine what mix of services would best match your school’s needs, feel free to contact us. We want your school community to be prepared.

Self-Advocacy: The Right Stuff

One of the more remarkable things about my (almost) 11-year-old daughter is how well she knows herself.  In fact, there are things she tells me about the way her brain works that astonish me, and give me keen insight into why other children with autism spectrum disorder might respond in certain ways to environmental stimuli.  For example, I opted to flat-out ask her a couple of years ago what was going on in her brain and/or body when she flaps her hands.  This behavior (sometimes called a "stim" or "self-regulating"), which we as parents first observed when she was approximately 10 months old, accompanied anything from watching bubbles being blown to water splashing in her toddlerhood, lining up plastic toys in early childhood, and drawing as an elementary school-aged student.

"I'm using my imagination," was my daughter's response to the query.  And the expression on her face was one of disappointed shock, as if to punctuate with a "Duh!".  I dove deeper into her account.  She explained that lining up her Barbies while they were all facing her allowed her to retreat into a creative process where the dolls could move and talk instead of having to be manipulated.  And there was a lively setting rich with sounds and smells and experiences.  There was no way to create all that physically; but in her mind, it was all happening.  And it was wonderful.

Her knowledge of her self is the beginning of self-advocacy.  Because knowing how her brain works well (or not), and knowing how that compares to other students, can be used to craft learning environments and teaching methods into something functional for her.  She knows that too much noise (students shuffling papers, talking amongst themselves, etc.) makes it impossible for her to process thoughts.  So when she's feeling overwhelmed, she's learning to make some assessments about her environment and ask for an alternate workspace if needed.

Not all children with ASD are as adept at communicating their unique needs (and neither was my daughter, frankly).  But it's never too early to begin to get them to recognize signs of stress in their bodies and help them and their education/care team identify alternative activities or adapted experiences to maximize success.

Using a common language is important, so the student can express him-/herself in a way everyone can understand and respond to appropriately and in a timely fashion.  If a child is unable to evoke the desired response, he/she is unlikely to continue attempting to use budding self-advocacy skills.

Good Friend's videos can help families and educational teams establish a common language.  Using the vocabulary and principles in the elementary and secondary version of our films can be a starting point for self-awareness.

The better a student understands him-/herself, the less dependent he/she will be on the care team to recognize signs of distress and the more likely a successful outcome will result from an inclusive atmosphere.  This will be especially important at the beginning of the school year, when the new educational team will not know the student very well and will be responsible for getting to know a classroom full of learners.

photo by Royce Bair

Students with "the right stuff" (as it pertains to self-awareness and advocacy) will have a better sense of control when the unpredictability of September crashes on them like a breaking wave.  Their feet will be properly positioned to withstand the rushing waters.  Here's to a summer of preparing those balancing skills!