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 CNN.com. "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 CNN.com, 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.

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!

What's so special about YOUR friend with autism?

I know what's special about my kids with autism.  And I'm talking special interests here -- fascinations, epic collections, subjects of deep knowledge.  I'm sure you have some of your own, and people give you gifts in kind, celebrating your passion.

Yet for some reason, we as caregivers are tempted to put a ceiling on these passions when they become uncomfortable for us as spectators.  We decide they love Power Rangers a little too much, or they spend a bit too long staring at their Pokémon cards.  I get that.  We want them to have age-appropriate interests and a broad range of them.  The cool thing about many people with autism is they often know what they like (and what they don't) with certainty, and at an early age.  Sure, some fleeting affairs of the heart will come and go; but they have a true love. What's so wrong with that?

I recall trying to use my son's Star Wars interest to create a math worksheet when he was in elementary school.  I thought using this graphic illustration of a word problem would be motivating for him.  The real problem was that he knew much more about Star Wars than I did (still does) and got stuck on my inaccurate labels.  (Luke Skywalker wouldn't buy another light saber, for the record; he only has one.)  So when you do use your student's interests, make sure your intel is legit.

Or let your student lead the way!  Allow him or her to showcase that vast expanse of knowledge, either to a small or larger audience, as a way to celebrate individuality and competence.  I know my son's summer school teacher used his special interests to mutual advantage during his reading class.  By allowing him to select books in his preferred topic and genre, she was able to get more engagement from him.  (See what Paula Kluth has to say on the topic for teachers.)

And at the end of the session, she sent a postcard.  The note referred to my middle schooler as a "fantastic leader" and "a pleasure to have in summer class."  Imagine that.

So get to know your classmate or student with autism by starting out with their special interests.  And be prepared to listen!

Back-to-school Top 10 List

I was all excited recently to see a top 10 word list regarding autism and bullying.  And I will admit that I was a little disappointed when I read the list.  While I understand the desire to teach specifically students with autism what negative social things are out there, I don't find it helpful.  So here's my Top 10 List, inspired by Good Friend's mission:

1. Educate. I really don't believe that "kids are mean" cliché.  I believe they're either ill-equipped with the proper knowledge of their differently-abled peers, or are lacking the proper social-emotional tools to be kind. In both cases, we as parents, professionals, and typically-developing peers need to educate others and ourselves.
2. Empower. Once staff and students are trained to recognize bullying behavior or disability harassment, they need to be empowered to act.  Give them the freedom, the infrastructure, and the tools to respond effectively.
3. Advocate. Students with autism need to self-advocate to get their needs met and their wants known. Their classmates and educators need to advocate for them when they see them in distress.
4. Believe. Believe in the abilities and the spirit of your student or friend with autism!  Believe you can make a difference in his or her life!
5. UPstander. Bystanders stand by when they see bullying or disability harassment.  We hope you stand UP!
6. Friend. One of the saddest statistics pervading the autism community is how few friends youth with autism believe they have. While establishing a friendship may be intimidating to typically-developing students, know this: Your classmate with autism requires surprisingly little of you; a high-five, a protective stance, an encouraging text message or note, or a once-a-month outing could be transformative.
7. Unity. I know it sounds a little High School Musical, but we're all in this together. True story.
8. Diversity. We're all different from one another. Difference isn't deficiency; it's diversity. Celebrate it!
9. Ability. Focus on ability and not DISability. It requires a change of perspective and will make everyone feel more positive.
10. Accept. This is is my most important word. Accept what you cannot change, such as differently-wired brains and all that comes along with them. Teach and support those with autism spectrum disorder; don't try to make them something/someone they aren't.

Forward this to your friends, teachers, and colleagues!  Maybe focus on a word a week for the fall as community-building exercises.  And let us know how it's going!

It All Matters

As educators and administrators start to get in the new school year zone, they'll go over the Individualized Education Programs (IEPs) of the students in their classes to get an understanding of some of the more specialized needs.  (Or at least they should be doing that!)  A good IEP is one that focuses on achievements and strengths while making challenging goals with supportive services to keep the student moving forward.  It would be sad and certainly not helpful if the narratives were filled with little more than disparaging notes and records of failures.  The IEP should give the accepting teacher a good base of ideas to keep the student learning and growing.

Assuming teachers are getting such positive documents, they should start in September with every intention of celebrating achievements.  If we subscribe to the belief that success begets success, and we know that there is some attrition of academic skills over the summer, then we have to be ready to set learners up for success immediately in that first week of school.  What accomplishments did they have over the summer?  What wonderful skills are they demonstrating those first days?

As the parent of two children with autism spectrum disorders (ASDs), I've learned that what seem like little things matter big time.  When my mommy friends were celebrating their typically-developing children's milestones, I began scratching my head while I observed my toddler with a differently-wired brain.  Once we had a diagnosis, I understood that we were on a different trajectory, but it would still sting to hear some of those early reports of my child's same-aged peers self-dressing or -feeding.  I was still looking in my child for the same achievements my friends were noticing in theirs.

What I wasn't trained to notice at the time was how my son was recognizing patterns and generalizing those to other aspects of his life.  For example, when walked to the refrigerator and took the number 9 magnet, turned it on its head, and said "six".  Or when he jumped out from behind the kitchen wall and said, "Boo!" to me, just like his favorite character Sulley from Monsters, Inc.

photo by Jan H. Andersen

But last month, when his 13-year-old self began singing in the shower, I knew what an achievement that was.  It meant that ...

• he was imitating.  His younger sister is quite a nightingale, and almost always exercises her pipes while showering.
• he enjoys music.  His Early Childhood and music teachers during his early years at school were far more likely to find him under the desk with his hands over this ears than participating in class.
• he can speak.  Many people with autism struggle greatly to communicate with spoken language.

I share this because ...

• as parents, we need to celebrate achievements like this.  It all matters.
• as educators, we need to continually point out students' successes to themselves, their parents, and their peers.
• as peers, we need to recognize that while our friends with autism might not be doing the same stuff we are, they're doing amazing things and usually have to work WAY harder at achieving those things than we do.

What victories are you and your student celebrating?

We need your support this Friday!

It's not so much that we as co-founders of Good Friend need you (though obviously, we do, and are so thankful for you!).  It's more that we need you to help us recognize some wonderful people.

• We need you to cheer on high school student and Master of Ceremonies Ellie Trewyn, who's the voice of Choosing To Be a GFF and is an aspiring broadcast professional.  
• We need you to congratulate Good Friend in Education Award winner Alexandra Krysiak, who, perhaps more because of than in spite of her own challenges, is a wise and powerful advocate for her elementary school classmates with autism. 
• We need you to put your hands up for Shelly Dretzka, Good Friend's Top Fundraiser for FY 2011/12, who rallied a dozen teams to participate in our 4th annual Hoa Aloha Autism Awareness Bowling Event and ultimately was responsible for bringing $2,862 in to support autism awareness, acceptance, and empathy.

And we want to have a blast while we're doing all that!  So we'll have a few black jack and roulette tables, just for fun, and at the raffle you could win some lovely home furnishings, including hand-tied fleece blankets!

And check out these fine silent auction items!

Handmade cuff bracelet and earrings donated by
Potawatomi Bingo Casino, valued at $200.

Handblown glass bowl donated by artist Craig Derby,
valued at $200.

Priceless handmade puzzle piece quilt donated by Cari Short.

Matted and framed limited edition Terry Doughty print,
"Phantoms of the Tamarack", donated by Jeannette &
Les Schamens and valued at $300.

Please say you'll come to Steinhafels in Waukesha, Wis., on Friday, Aug. 3, at 7 p.m.  Just let Denise know you're coming (262-391-1369).  We always welcome your online donation, too, in case you wish to give a gift in honor of Good Friend's 5th birthday without attending the festivities.  Thanks in advance!

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?