Monday, September 24, 2012

The Social Butterfly Effect

This week's post is the kind that will make you science types cringe.  I'm going to get all metaphorical with your physics and play on words held by theories because I like the way it sounds.  So there.  But stick with me.

Last week, I gushed about the touchdown play my son's team orchestrated for him during a recent flag football game.  Let me tell you how that ten-second huddle will lead to the meaningful employment of an adult with autism 20 years from now.

First, a little something about the butterfly effect.  The general idea is that the flap of a butterfly's wings can impact weather patterns somewhere else in the world.  The thought of the gentleness of this silent flight rousing a tempest espouses chaos theory talk that's way over my head, but I can grasp the impact on atmosphere.

In sociological terms, we think of the ripple effect.  Someone touches their community with a charitable act, and the outgrowing concentric circles create pay-it-forward waves of goodwill.

ripple effect © by leafy
Think of that touchdown play as something larger than passing a ball.  Consider the egos that were set aside in order to build another's up.  Take a moment to realize the cooperation, the belief in the underdog, and the flexibility these teens exhibited.

Managers -- when you're putting a team together at work, don't you want to choose the players who know how to work together and focus on each others' strengths instead of attacking weaknesses?  Don't you want to reward the adaptability that leads to the desired outcome?  These are the qualities of leaders.  And the employees who clinch the deal and look back with gratitude at their colleagues who helped put it together are the ones who earn respect and work with humility.

When your student with autism applies for a job someday, he may interview with the quarterback for my son's flag football team.  And that young man will think of the day he huddled his teammates behind that line of scrimmage, and gave a kid with autism a chance to be the team hero.  He'll remember how little they as a team had to change to make a world of difference for my son.  And the difference my son's joy made on that 8th grader's heart will encourage his adult self to hire your student with autism.

All because a butterfly flapped its wings.

Monday, September 17, 2012

The Social Currency of Extracurriculars

During intramural flag football last week, my 13-year-old son with autism scored a touchdown.  But it was so much more than that (as if that weren't enough of an accomplishment!).  It was a snapshot of what every inclusion proponent dreams of.  Two teams of 7th and 8th grade students played, my son's team with enough members that they had to sub several players in every four plays (or so).  But let me give you some context first, which likely applies generally to middle and junior high schools.

Since there aren't enough resources in our school district to provide support personnel for students with disabilities, it's hard to find them in activities beyond the school day.  Yet that's exactly where they need to be in order to build rapport with typically-developing classmates.

There is little opportunity for socialization at school outside the classroom.  With teaching time at a premium, educators of middle school core curriculum classes have enough time to do a bit of community building at the beginning of a term, but that's about it.  Then, just as students with ASD are getting comfortable enough with their physical circumstances to learn about their classmates, it's time to jump into learning.

What about socializing at lunch, you ask?  Have you been in a middle school cafeteria?  It's about the most awful sensory environment imaginable.  Many students with autism have to devote their entire well-being to keeping it together in order to eat.  And I'm sure I don't even have to tell you about the bus rides to and from school.  If students are on the general ed bus, they're likely anxiety-ridden on the way to school and exhausted on the way home.  Plus, in both environments, there is likely a lack of adult supervision, which means no safety net if the student with autism makes a social misstep (or worse yet -- the neuro-typical students with whom he or she is attempting to communicate become disrespectful of the outreach).

And the social currency in middle school is the extracurriculars: sports, clubs, councils.  This is where students express themselves in a context of what they've chosen and enjoy, and where they're noticed, for better or worse, by their peers.  These are the stories they tell their friends in text messages and at lockers.  This is where, when we support our students with autism, they can become heroes.

So I'm glad to be there as a support person for my son when he wants to play flag football.  I will admit that I remain cautiously optimistic about good outcomes for these opportunities.  When it comes to competitive performance, my son has two modes: horrible, negative self-talk or animated, celebratory "smack talk".  The former sounds whiny and the latter, boastful.  We (the entire educational team at school, from the special education teacher to the speech-language pathologist) work on moderating these extremes outside the games, along with providing visual explanations of the rules and positions involved in the sport.  We also talk about what it means to be a good teammate.

Clearly, this last piece is catching on this year.  All these years of peer education and character building have laid a foundation for this touchdown moment.  My son has made a positive enough impression to be accepted onto a team, and the members have sized up his abilities.  They've taken a couple cues from the way adults interact with him, but at least a couple of them feel comfortable to work it out on their own.  My big 5' 7", 165-pound 8th grader was content to be a lineman for the first half of the game, but was clearly jonesing for an opportunity to catch the ball.  So his team set it up.  And the other team saw it.

The first play failed ... miserably.  The quarterback tossed a soft sideways pitch to my boy who caught it, made a few hesitant leaps forward, and threw it clumsily back at an opposing teammate, who luckily couldn't catch the wobbling ball.  The second attempt was better planned by the quarterback, who huddled everyone together briefly at the line of scrimmage, but made very sure my son knew what to do.  The snap to the quarterback ... the QB drops back ... my boy runs a few yards out and up ... he receives the pass!  But this is the coolest part -- the QB and the linemen start running ahead of my boy to make a path for him along the sideline; and the other team sees what's happening, and a couple of the chasers lose steam.  As everyone is cheering for him to make it to the goal line, a boy comes perilously close to snapping my son's flag from his belt, but tumbles off out of bounds behind him instead.  My son stood ecstatically in the end zone, jumping for pure joy, while everyone celebrated his accomplishment.

And as I was thanking his teammates and the other kids for orchestrating the triumphant play, one of the girls from the other team said to me on the way back down the field to receive the punt, "That boy who fell is my brother.  He was really trying to get him.  That touchdown was all him."

I know middle schoolers don't want their parents around at school, and they all want to find their own way.  But I'll tell you what: I am so thankful to be the mom of a boy with autism.  Because if I weren't, I wouldn't have had to chance to see what a hero all our kids can be.

Monday, September 10, 2012

Blaming the Victim

An article published online in the Archives of Pediatric and Adolescent Medicine last week regarding autism and bullying set the news and social media ablaze with headlines and commentaries.  As a parent, professional, and advocate, I noticed a disturbing but familiar pattern about the "angles"; there was a lot of victim blame going on.  Just read these headlines and pull quotes:
Why autistic kids make easy targets for school bullies from TIME, posted in the Health section of "Many people with autism have trouble recognizing social cues, which makes them awkward around others. They also often engage in repetitive behaviors and tend to be hypersensitive to environmental stimuli, all of which makes kids with the disorder ripe targets for bullies who home in on difference and enjoy aggravating their victims."
School bullies prey on children with autism from The New York Times. "Children and adults with autism spectrum disorders often are socially awkward and have difficulty communicating and recognizing social cues. Another hallmark of the disorder is a strict adherence to rituals and habits. 
"'Many of the defining characteristics of autism are the ones that put them at greatest risk of bullying,' said Dr. Catherine Bradshaw, deputy director of the Center for the Prevention of Youth Violence and an expert on bullying at Johns Hopkins University."
Indeed, one could find encouraging, helpful statements in the reports.
In the story on, author Maia Szalavitz writes, "Research finds that the best anti-bullying programs are comprehensive, involving the entire school and not just individual students. Programs that work well tend to encourage a warm school environment in which diversity is celebrated; they also rely on adults at the school, from the principal to the lunch ladies, to set a tone that clearly indicates that bullying isn't acceptable. 
"Studies find that students in schools that create such a welcoming atmosphere not only perform better academically, but also have lower rates of behavior problems like alcohol and drug use."
The last bit of the Conclusion from the Archives research study abstract notes that a goal for future bullying prevention programs is "increasing the empathy and social skills of typically developing students toward their peers with an ASD".

The good news is that Good Friend, Inc., has been creating tools and conducting services to do just those things for more than five years.

We appreciate educators, parents, and therapists who are working creatively and tirelessly to assist adolescents with ASD in social understanding and skills training.  And while many of those interventions are helping students with ASD become more socially aware, that focus is narrowed to just over 1% of the student population.  And there is no depth of social understanding that will change a person with autism's neurology; their brain will always be wired differently.  It is therefore ineffectual to continually state the characteristics of students with autism that make them vulnerable.

What we need to do instead is focus on the typically-developing peers, some of whom are perpetrators, others bystanders.  These make up the vast majority of the student body.  By creating autism awareness, teaching acceptance of differences, and fostering empathy for their peers with autism, we are preparing school communities to be full of UPstanders who will not stand by as their classmate is tormented.  They will have an understanding of "invisible disabilities" such as autism commensurate with their social ability to navigate complicated relationships.

In other words, instead of putting the onus on the child with autism to change, we are changing the school climate, from the administration on down.

Monday, September 3, 2012

Resources for Wisconsin and beyond!

Part of the fun of directing a nonprofit organization is allowing its impact, versus its bottom line, to be a derivative of success.  Good Friend, Inc., co-founder Denise Schamens and I take most of our salary as kudos and compliments, thanks and hugs; they are far more valuable than dollars and cents.  By investing ourselves in personal and professional development, we can multiply our resources so as to divide them equitably between home (since we're both parents of students with ASD) and work.

Families and educators often derive similar payouts from autism-specific training.  Recognizing both the importance and the mutual benefit, the Wisconsin Department of Public Instruction (DPI) graciously offers quality learning opportunities to anyone who interacts with students with autism in the state.  From free downloadable webinars to two-day continuing education seminars conducted in various locations in the state, there's something for everyone -- from the parent of a recently-diagnosed kindergartener to the program support teacher who wants to know more about functional behavior assessment (FBA).  Don't see something close enough to your area?  Check with your Cooperative Educational Service Agency (CESA) to see if they have any offerings.

Not from Wisconsin but still want resources?  Those links are there, too; a couple of the best being Autism Internet Modules and The National Professional Development Center on Autism Spectrum Disorders.

Even if your school foregoes Good Friend's staff in-service, there are plenty of places to go for specific learning about this population of students who deserve to be taught with expertise and treated with understanding.  As I'm sure Wisconsin educators are aware, this week begins the Seclusion and Restraint legislation passed as 2011 Wis. Act 125, which prohibits the involuntary separation of a student from his or her peers and the use of physical restraint, except in specific cases of imminent risk of bodily harm.  If ever there was a time to realize that an ounce of prevention is worth a pound of cure (and a looming lawsuit), this is certainly it.

Three cheers for the lifelong learners among us!  Hip hip hooray!  Have a wonderful 2012-'13 school year, and do say "hello" if we're at a training together!