Talking to Children about Talking

A couple weeks ago, I was with my 12-year-old daughter and 15-year-old son at a public park pool in our community.  It's generally a great place to connect with friends from school.  But not all children are friendly -- or at least they say some pretty unfriendly things.  One group of 14ish-year-olds made my son particularly upset when he tried to interact with them.  Seeing his anguish, a couple of them initiated personal apologies to him on their own.  And while that social bravery was impressive, it was like this illustration:

So while I'm thinking about it, I'd love to share with you parents and summer day camp directors and staff members a top five talking points list about encouraging healthy social interaction in the community -- especially because around 15% of the children they encounter will have some neurological difference, or invisible disability.

1. We are all different.  Some differences you can see, like hair color or wearing glasses.  Others you can't, because they're based in the brain.  Brain-based differences cause some children to perceive parts of their world ways most other people do not.  There's nothing "wrong" with their perception; it's just different.
2. While we are all different, we all want to belong.  Some kids are better at expressing their desire to be friends than others.  No matter what, no child wants to be told to "Go away" or hear "Leave me alone" when they're trying to make a social connection.  If you're already hanging out with a group of friends, consider inviting the child who approached you to hang out, too -- even if it's just for a few minutes.
3. If the child who approached you to play says something that makes you uncomfortable, tell him or her in a matter-of-fact but helpful way.  Better yet, give them a more appropriate thing to say or question to ask.  Often times, children with autism spectrum disorder (ASD) have fewer social tools in their tool box, or may use them in a clumsy way.  They're trying; be respectful of their attempts, but also aware of your own boundaries.
4. Really consider how you would want to be treated if you were brought into a place where you didn't know anybody.  Some of your friends might think it's funny to mess with someone with a brain-based difference.  They might not think right away about how that child is understanding others' intentions. This might just seem playful to you or to them, but it's really called disability harassment; and it's against the law.
5. If you see or hear someone being treated in an unkind way, please bring it to the attention of a nearby responsible adult.  If that's at the pool, it's a lifeguard.  If it's at camp, it's a counselor.  Everyone has a right to feel safe and respected in our community.  At all times.  No matter what.

I am sure we all want our children to be good citizens.  I know that parents aren't always aware of how their children behave in a loosely-supervised social groups.  Remember that social emotional instruction is continuous and just as important this summer as finding a good book to read.

Getting Off the Sidelines

By the time students are in middle school, those who want to be athletes are getting comfortable in their sport(s) of choice.  Whether the involvement is meant to be just exposure to the activity or full-on competition, between the school's and community's offerings (outside of rural areas), typically-developing adolescents can generally find something that suits them.

Those with developmental or physical differences have a harder time fitting in.  (Just ask Damian Buchman, founder of Adaptive Scholastic Athletic Program, how difficult it is to find the proper equipment and facility for wheelchair sports!) Some students with autism might really enjoy what Special Olympics or other local adaptive recreation programs (TOPSoccer, for example) have to offer, whereas other athletes prefer to compete with their neurotypical peers.  Either way, the Office of Civil Rights (OCR) is putting schools on notice about their institution's offerings through a "Dear Colleague" letter published last week by the U.S. Department of Education.

I am delighted that the OCR is clarifying the application of Section 504 of the Rehab Act on this issue.  After all, as the letter points out, "access to, and participation in, extracurricular athletic opportunities provide important health and social benefits to all students, particularly those with disabilities.  These benefits can include socialization, improved teamwork and leadership skills, and fitness."

As a parent, I have been invited to so many school open house opportunities where there is lively presentation and discussion about the extracurricular opportunities afforded to typically-developing students, but when school representatives are asked about programs accessible to students with special needs, there is often a confused response, sometimes as if the possibility weren't even considered.  Our best-case scenario has been that indeed, my son with autism is welcome to be at the given activity, but there will be no support provided by the school.  (See also "The Social Currency of Extracurriculars".)

I have regarded that lack of support as the school flirting with disability harassment, and I believe this letter validates my concern -- and likely that of so many other families.

Of course, there's probably not a school in the nation that doesn't want to support its students with special needs in their participation in extracurricular activities, but where will the resources come from? In Madison, Wis., one high school supported a student with autism by hiring a college student to serve as his guide during track events.  The New York Times article (Aug. 1, 2010) included information about how much more expensive it is to educate a student with a disability versus a typically-developing student, and board members acknowledged the precarious nature of budget funding sources.

So how else can we get our students with autism off the sidelines and into the game?  Here are some ideas (subject to your district's restrictions on background checks or other liability concerns):

• Partner with an area college or university's Education, Health Care, or Psychology program to recruit students who need volunteer hours.  Try to keep the same student pair (as long as it seems to "click") for the duration of the activity so the student with autism can develop a rapport with his support person.  Consider transportation needs.
• Develop peer mentors in high school who can work with middle and high school students to offer support during activities.  Use service organizations like Key Club or honors groups, billing the role as a leadership opportunity.
• Get Applied Behavior Analysis line therapists to support students.
• Ask the student's Speech-Language Pathologist to review the objective or rules of the game during scheduled interventions (not during the activity itself).  Have the SLP create visual supports that any support person or even the student himself can use as cue cards, of sorts.
• What about those background checks?  Can you use the one the college or university required for admission into the program?  Will a Medicaid waiver cover that expense?  Is there a parent-teacher organization that can set aside funds as an annual budget item?  What about an athletic booster group?

Teachers and parents are experts at finding creative solutions.  What have you done that's been successful?

Bullying Prevention Month

A couple of my Facebook friends have sent me the same meme, which says something along the lines of, "I don't think the worst thing in the world is raising a child with autism, but raising a child who is cruel to someone with autism."

Bullying is not a problem of childhood.  It's not a developmental phase.  It's not a cry for help.  It's "a profound public health problem"; an unhealthy social practice that's been allowed to exist and morph in so many environments that it's become pervasive.  And as a society, we have too many people standing BY and not enough people standing UP when they see these power imbalances.

The disgust with the lack of engagement has reached a tipping point in the last five years.  As a result, new bullying prevention and awareness programs and initiatives are popping up all over the place.  Good Friend, Inc., has been differentiating between disability harassment and bullying since 2007.  But in the absence of a Disability Harassment Prevention Month, we'll piggyback on the Bullying Prevention Month efforts.

On Wednesday, Sept. 26, which happened to be Bullying Awareness Day in Wisconsin, BULLY put out a great "Battle of the Bullied" infographic which put some statistics behind the need for grassroots bullying prevention campaigns.

Stomp Out Bullying™ has initiated Blue Shirt Day™ as a World Day of Bullying Prevention.  So if you're not wearing blue today, you've missed that opportunity.  But don't fret -- you can (and should) still wear orange on Unity Day, Wednesday, Oct. 10.  And you can do something on an even grander scale during this month, which is National Bullying Prevention Month.

Some people might be feeling inundated with requests to draw attention to bullying and prevent this epidemic.  If you're one of them, please let me know which day we can stop thinking about the social emotional health of our children.  Let me know when we should stop offering practical tools to bystanders so they can intervene in a bullying situation.  Tell me when our children's safety and relational aggression are no longer concerns.

For the rest of you who will heed the calls of these wonderful organizations and join in demonstrations of support, be sure you post pictures of your blue or orange shirts on our Facebook page, or tweet them with hashtag #GoodFriendInc.

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.

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!

Lead by Example

The past few days have offered Denise and me wonderful opportunities to communicate Good Friend's Awareness-Acceptance-Empathy message.  As parents and professionals, we absorbed the teachings of dozens of speakers at the Autism Society of Wisconsin Conference.  The closing keynote speaker on Sunday, Nicole Beurkens of Horizons Developmental Resource Center, offered one of my favorite "a-ha" moments of the three-day run: Making meaning of information is critical.  We are quick to offer information to people and eager to see what they do with that information.  But if they aren't able to attach appropriate meaning to that input, then the output will seemingly fall short.

During our presentations at both the ASW and WASC JAM (Wisconsin Association for Student Council Junior and Middle School) Conferences, Denise and I emphasized how important it is to give middle school students relevant information about autism so they can be aware of why peers with ASD experience the world differently.  But awareness is not enough, as we all know.  Because if we don't make meaning of why we need to understand the differences, then acceptance won't come easily, and empathy may not be an outcome at all.

Ellie Trewyn, narrator of our award-winning film Choosing To Be a GFF (2011), along with Jacob Schamens, another of the film's stars and the older sibling of a brother in middle school with autism, were critical to creating meaning for the 5th through 9th grade students who attended our WASC JAM Super Sectional presentations yesterday.  Throughout the presentation, these high school freshmen were able to tell their peers how their perceptions of autism and bullying had changed as a result of participating in Good Friend's development and production of the film, how important student leaders are, and what they've been able to accomplish in their own peer groups as far as acceptance goes.

In the hotel atrium following their WASC JAM Conference presentations are (left to right) Chelsea Budde, Ellie Trewyn, Jacob Schamens, Denise Schamens, and Dani Rossa.

Ellie's stories highlight the importance of meaning.  She said that while she's spoken with her close friends many times about her connection to the film and the cause, they were astonished when she took the initiative during a recent school lunch period to help a distressed friend with autism.  Ellie was confused by their amazement over her gesture of kindness, assuming that any of them should and would have done the same thing.  Her message to the students was clear: Do the right thing, no matter what your friends think. Being a leader means showing others the right thing to do, hoping they'll follow, but not caring if they don't.

We appreciate students who lead by example.  We have one more week to accept nominations for our Good Friend in Education Award.  Send Denise a short email about who you know who's demonstrating acceptance of autism.

The Silence of Our Friends

As we were doing the research for our middle school film, Choosing To Be a GFF, we noticed a heart-breaking trend.  Typically-developing students who were friends with a child with special needs in elementary school treated their differently-abled peer as if he or she were invisible in the great chaos of blending friends in middle school.  From the point-of-view of the "regular education" adolescent, this new school was not a time to stand up and stand out, but a time to take a big step back and decide who was going to be included in the new friendship mix.  Reaching over to draw in a child from the "special education" co-hort took a measure of character that had not yet developed.

Yet from the point-of-view of the student with a disability, he or she was rejected at a time when social support was most needed.  This new school was bigger and less predictable, and the only thing he or she figured was reliable was the smile of a long-time buddy.  How awful when that buddy chose to cast her eyes down when her friend with Asperger's passed in the hallway; or when that pal kept his hand in his pocket when his friend with Down Syndrome lifted his for a high-five.

On this Martin Luther King Jr. Day, a favorite quote of his rings in my ears: "In the End, we will remember not the words of our enemies, but the silence of our friends." Sometimes that silence is the reason for a friend's feeling of rejection. Perhaps that friend saw disability harassment taking place right in front of him, and he chose to remain silent. Maybe that friend could have offered a word of encouragement when her friend ran by in tears, but decided that was too risky. And maybe that silence caused a child with special needs to despair of his or her own life.

Were Dr. King alive today, I'm sure he would see that America's battle with discrimination on the basis of disability is the frontline of inequality in education and the workforce.  And he would have a dream ...

Happy Thanksgiving!

First, a warm welcome to our new friends we met at the OCALI Conference and Exposition in Columbus, Ohio, last week!  Whether you came by our booth, attended our breakout, and/or purchased one or both of our DVDs, we appreciate your interest in creating a culture of acceptance at your school.

This is a great time for expressing gratitude in general.  As an organization, Good Friend appreciates each of its members and supporters who give of their time, talent, and monetary resources to keep the autism Awareness-Acceptance-Empathy message moving forward.  Nonprofit organizations rely on the generosity of others to sustain their missions, and Good Friend is no exception!  We are glad you understand that the work we do in building strong social foundations today becomes the base for our community's pillars -- employment opportunities, accessible recreation, and universally designed facilities where everyone's abilities are valued.

We also appreciate the schools that are taking time out of their day to equip their staff and students to recognize disability harassment, respond appropriately, and think proactively.  These schools that choose to engage Good Friend are aware that all students learn better when they feel safe and respected.

It's never too late to take steps toward creating a safe social climate at your school.  And if you're enjoying such a campus, we know you are thankful for it.  If not, get in touch with us and let's find a way to add that kind of climate to your list of things for which you're grateful.