"A Difference for the Good"

I could spend the next month's worth of blogs breaking down the lyrics of The Figureheads' original song, "We ALL Fit", written and produced for Good Friend's upcoming elementary school peer sensitivity film of the same title.  And each week I could focus on a phrase that has come to mean so much more to me over the process of observing the interactions on the film and music video sets.  But with the video scheduled to be available on YouTube within the next month, I don't want to infuse my own experiences into the song for you.  I want you to tell us your stories!

Jeremy Bryan, Dave Olson, and Greg Marshall
of The Figureheads on the set of our music video

Still, I can't resist these lines from the bridge:

And if I had a friend
Someone who understood
Then that would make a difference,
a difference for the good.

What difference has having a friend (or a group of friends) had in your life?  Go back to your elementary school days.  What about then?  What did it mean to you to have a friend?  Forget about trauma and tragedy, like parents divorcing or grandparents dying.  What if you didn't have a friend to get through the daily things, like learning to ride your bike?  Or letting you borrow a pencil when yours broke?  Or handing you a tissue when you were about to sneeze?

What if you wanted a friend desperately, but you were dropped into a new foreign language immersion school, and you didn't speak the language?  Now you need a friend more than ever, but you don't have the tools to connect.  You can't tell them about your interests and don't know how to ask them about theirs.

Consider for a moment that this is what it's like to have autism.  You don't speak the social language, and you don't understand the nonverbal components that are inherent in the customs of this neurotypical world.  But you need a friend.  Because you know that that would make a difference for the good.  Your friend would help you make sense of what you see and hear.  Your friend would stand up for you when others, unaware of the way your brain is wired, tease, belittle, and bully you.  Your friend would see when you need space and when you need support.

When one of the 9-year-old members of our cast heard the bridge for the first time, he told his mom, while rocking to self-regulate and connect to the music's beat, "That's just like me."  She and I had tears in our eyes as we pondered and observed, convicted by the simplicity and the heartbreak of the truth of it all.

Please consider today how you can encourage your typically-developing students to be a friend to a classmate with autism.  If you're not sure how to teach them to make a difference for the good, Good Friend would be happy to help!

UW-Whitewater Study of Good Friend Interventions

Last week, Denise and I attended and presented at the 6th annual WisABA Conference.  At first, the disparity between the numbers of capital letters after our last names representing our degrees and certifications was intimidating to me.  There we were, in the company of many highly-educated and -trained professionals in the fields of skilled service delivery to individuals with developmental disabilities including autism.  Their technical language was beyond my scope of understanding, in some cases.  And while I recognize and respect the appropriateness of such education and training, for certainly the population that they serve are highly-deserving of their formal preparation to provide therapeutic interventions, I appreciate the equal commitment parent-professionals like Denise and I possess.  Furthermore, we recognize the equal devotion to positive, measurable outcomes of our interventions.

Good Friend's desire to establish an evidence basis for our services was innate.  Since 2008, we'd been seeking an independent researcher to study the effectiveness of our interventions.  Because our interventions are with the classmates and educators surrounding the students with autism spectrum disorder (ASD), we knew the validation study would have to include hundreds of participants in dozens of services.

Though our first collaboration with UW-Madison disintegrated when the professor left for a position out-of-state, another door opened in 2010 through UW-Whitewater.  Dr. Simone DeVore met with Chelsea Budde and Denise Schamens to discuss the possibility of initiating a study of Good Friend’s elementary school services.   In 2011, Dr. DeVore and her colleague, Dr. Brooke Winchell, were able to observe our staff and student trainings and develop tools to measure change following our staff in-services and Peer Sensitivity Workshops (PSWs) for grades 3-5.  They then drafted a proposal to the university’s Institutional Review Board for the Protection of Human Subjects (IRB) for approval to allow us to move forward with a pilot study.  Finding willing schools to participate in the pilot in the spring of 2012 paved the way for the next phase, which was the finalization of the tools and application for IRB approval of the full study.

The recruitment of participating schools began in the summer of 2012, with Letters of Affiliation from the University and Presentation Agreements from Good Friend.  Services were conducted between September, 2012, and May, 2013, at no charge to the host schools, but the school administrators were required to get consent from the students’ families to participate.  The schools also helped administer the pre- and post-intervention surveys, which contained both quantitative and qualitative questions.  In the end, the stack of data pictured in the last blog entry was the harvest of three years of collaboration, and was collected from some 800 participants.

Dr. DeVore and Dr. Winchell presented the findings to Denise and me earlier this month.  Based on the data collected through the study, we can say that Good Friend’s PSWs “highly influence” students’ survey answers regarding their understanding about autism (its cause and manifestations), their likelihood to interact with classmates with autism, and their comfort with doing so.  Data collected from the staff in-services highlights improved understanding of available resources, knowledge of strategies for disability harassment intervention, and confidence in working with their students with autism.

Some recurring appreciations from staff include the authenticity of our examples and personal stories, the common language we're able to provide participants, and the relevant resources we're able to explain and connect them with.  What they regret is not having the trainings earlier in the school year and more time to troubleshoot!  In some of the peer participants' comments, it's clear they've absorbed key concepts and are using the terminology accurately!

Denise is looking forward to attending Dr. Winchell's co-presentation with Dr. DeVore of "Autism Peer Intervention Validation Study: Promoting Teacher Knowledge and Peer Sensitivity", based on the research Council for Children with Behavioral Disorders’ annual conference in Chicago, Ill., next month.  The professors are also creating a presentation proposal for the university's Early Childhood Conference (April, 2014).  Furthermore, they are initiating a text analysis of six years’ worth of Good Friend student question cards collected during Good Friend's PSWs.
findings, at the

We are taking the study-based recommendations from the professors and tweaking our services, with the intention of collaborating again with the University in the coming years to do both PSW student subject case studies and longitudinal studies on PSW classrooms.

Frankly, it's a great time to hop on the Good Friend bandwagon!  If you'd like to contribute your time and talent to our mission, we'd be glad to have you!  Contact me or Denise and we'll get you plugged in.

Autism and Relationships in Adolescence

In December, I chose to share some thoughts about friendship skills of students with ASD in preschool and elementary school.  As students move into secondary school (grades 6 through 12), the nature of their relationships change.  Puberty becomes a factor not only in physical development, but in social-emotional development as well.  And just as physical maturity varies wildly in this life phase, so does social-emotional maturity.

Most neurotypical (NT) tweens will form strong bonds with a select few peers.  This may be a nuclear group they retain from elementary school during the transition to middle school, or it may be a mix of peers: some from the "old" school, some from the "new" school, and others from extracurriculars (sports, faith-based groups, etc.).  Some may venture into "romantic" relationships, and even that will be a spectrum.  As they near the end of middle school, there will be those who fall "head over heels in love", forsaking their friend base to explore this new relationship category.  Others may dabble, but (appropriately) don't take these early romantic entanglements too seriously.

While parental engagement in an adolescent's social life is still necessary, children may begin to rely more on peer guidance for relationship management.  And for students on the autism spectrum, they may have precious few friends in middle and high school.  This may be by design; decoding unwritten social rules is exhausting.  Perhaps maintaining a couple key connections taps the available social resources for your student with autism.

Zachary Riggins, The University of Alabama

Just as parents of NT children seek to influence relationships in their adolescent's peer groups, those who care for students with ASD should also continue to guide and explain social relationships.  People with autism often miss the nonverbal communication styles that become increasingly important in secondary school.  Consequently, they may not respond appropriately.  Their inadvertently inappropriate response may offend a peer without proper understanding of autistic neurology.  And, in extreme cases, may draw the attention of authorities.

Besides the popular approaches to socializing such as video modeling or Comic Strip Conversations, you might consider laying down some ground rules.  Quantitative guidelines such as "2 text messages per day, per friend", or "1 phone call every 3 days" might help your teen establish boundaries that are healthy both for him or her and the friend.  Don't be afraid to use visual reminders of guidelines, such as sticky notes or checklists.  And be very careful about allowing adolescents with autism onto social media outlets where their social understanding (or lack thereof) can be exploited.  Squag is a great website for tweens and teens with autism (and their siblings) to start learning about personalizing a place on the Web using a safe, secure platform.

While it is important to encourage some independence in socialization for adolescents, it is imperative, for the well-being of our children, to remain actively involved in the development of healthy social-emotional skills.  Thank you to the speech language pathologists who are are purposefully working with students to be sure these skills -- which we know to be pre-employment qualities -- are nurtured!

A Spectrum of Friends

First, to honor the lives of the students and staff lost in the Sandy Hook community in Connecticut ...  There is no amount of explanation that will heal hearts, but we hope our prayers for the survivors and tears for the slain will resound across miles and time.

This week's topic was to be based on friendship in elementary school -- a follow-up to last week's thoughts regarding peer relationships in early childhood.  It seems now, with these budding first grade friendships forever frozen, a respectful tribute of sorts.

There are three main considerations of peer relationships in elementary school as they apply to students with autism spectrum disorder (ASD).  First, that they are a necessary part of social-emotional development and mental health.  Second, that they will exist, but perhaps to a differing depth and breadth than their neurotypical (NT) peers will experience.  And finally, that they should be specifically developed and nurtured for mutual benefit.

As we look at the determinants of quality of life for adults living with autism, we notice that connections in the community are key.  Jobs, recreational opportunities, and social/familial relationships help us, whether we have typically-wired brains or not.  Learning to form and derive enjoyment from these connections starts in elementary school.  Tony Attwood, author of The Complete Guide to Asperger's Syndrome and a world-renowned clinical psychologist specializing in the treatment of individuals with ASD, notes that the ages of 4 to 6 years are critical for motivating these early friendship skills.  While social impairment is a diagnostic criteria for an ASD diagnosis, it doesn't mean that relationships are less important to the development of someone with autism.  It helps to understand, however, that these relationships may look different than those between NT peers.

Many individuals with autism prefer to interact with people either younger or much older than they.  In the case of elementary school students, the 3rd grader may gravitate toward 1st graders on the playground; or the 2nd grader may bond with his speech-language pathologist versus his classmate.  In the case of the former, delayed social maturity may play a role, as well as a sense of competence around less-complicated unwritten social rules.  For the student who prefers to socialize with adults, contributing factors could include a penchant for specialized conversational topics (i.e., migratory patterns of birds or dinosaurs of the Mesozoic Era), an acceptance or level of patience not experienced among peers, or a gravitation to the familiar (in the instance of children receiving many hours per week of adult-driven therapies and interventions).

Whatever those early connections are, channel them into platforms for generalizing positive social behaviors.  Speech therapists can use the foundations of these friendships to seed new social skills, such as turn taking in conversation or noticing tone of voice and body language.  Since words only account for (at best) a third of our communication, "speech" skills are inextricably tied to these social nuances so elusive to our friends with autism.

So maybe elementary school-aged children with autism might not have the quantity of friends their NT classmates have, but the quality of their early friendships is immeasurable.  They are the building blocks of critical social development, eventually contributing toward peer acceptance and positive self-image.

And we should not ignore the benefit that students with typical brain development derive from these opportunities to learn, relate, and grow.  One of my son's very first friends was able to decrease his own school-related anxiety by focusing on the help he provided to my boy.  Studies on Peer-Mediated Instruction and Intervention programs have demonstrated that specifically-trained mentors achieve better academically and feel more fulfilled because of their engagement in these relationships.  They become less self-absorbed and more empathetic.  They develop leadership skills and flexibility -- traits which will eventually make them more employable, as well.

Ultimately, children with autism should have a spectrum of friends: ones they can share their special interests with, ones who help them be the best social being they can be by gently pushing development of new skills, ones they can feel competent with at their social-emotional level, and ones who accept them right where they're at, regardless of outward manifestations of their autism.  Are we as NTs any different in our need for a diverse friend base?

Autism and Peer Relationships in Early Childhood

In the state of Wisconsin, the average age for receiving an autism spectrum diagnosis is 4-1/2 years old (CDC, 2012).  By this time, while most parents report that their child later diagnosed with ASD exhibited symptoms before seeking a medical diagnosis, children should already have been receiving services through Birth to 3.  That being the case, many of these children transition into their school district's Early Childhood program (age 3-5, or kindergarten), where, hopefully, they have access to typically-developing peers.

In the case of my now adolescent children with autism, we are fortunate enough to live in a resource-rich area where my intentions to maximize their social and educational experiences were realized without extraordinary effort.  Sure, I had to serve as my daughter's "educational assistant" in a private day care when she was 3 years old because she wasn't yet toilet trained and required additional social support, but it provided opportunities for me as a mother to recognize what developmental areas required extra attention and focus on those in- and outside the day care setting.

One of those areas for both of my children was their relationship development.  When I was asked by neuropsychologists during their diagnostic interviews how many "friends" my children had, I guess I wasn't so sure of the definition.  It was loosely described to me during the evaluation process as particular same-aged peers whose company they sought out or enjoyed.  Having no "normal" baseline before I observed my children with their classmates, I assumed the parallel play my 4-year-olds engaged in was age-appropriate.  But by the definition of friendship in a recent textbook I was reviewing in preparation for a guest lecture, my children with ASD had no friends.

However, I think we need to measure and define friendship a little differently for our students with ASD.  If we can base friendships on shared interests, mutual admiration, and general good will (versus willingness to share, the ability to enter play situations, and solve conflicts, for example), then it will be easier to pair typically-developing students with their classmates with autism.  Students with ASD may be unskilled at initiating social interactions, but that proclivity my 3-year-old daughter had to pet her classmate's long, silky hair both satisfied a sensory input desire and served as a greeting.  My 4-year-old son's proximal babbling with eye contact demonstrated to his classmate that he wanted to communicate with him.  These, in my opinion, are the seeds of relationships and should be celebrated as such.

So the next time you see a 3- to 5-year-old with autism in the vicinity of neurotypical peers, encourage the budding healthy interactions without concern about the quality or duration.  Keep rewarding efforts to engage peers while teaching social understanding and motivating students with ASD.  The baby steps you take in these early years are the training exercises for the races they'll run as they get into intermediate elementary education and beyond.

What precious "friendship skills" have you noticed in your young students with autism?

Partying with autism

When Denise and I do student services in elementary schools, we are often encouraging the typically-developing students to invite their friends with autism to their social gatherings.  Birthday parties are often a big deal in a little life.  And while some adventurous parents are willing to go all out and invite the whole class, most families opt for a shorter guest list.  Trimming the classmate with special needs can be an easy choice.  Let me offer a few potential perspective changing thoughts on that.

First, inclusion in education shouldn't stop when students leave the classroom.  Part of the reason that inclusive models are practiced in schools is to promote inclusive communities.  We have decided as a society that excluding people on the basis of their disability isn't acceptable.  However, we have also decided that providing supports, whether natural (peers, family members, etc.) or created (Department of Vocational Rehabilitation, educational assistants, etc.), is required for success.  Here are some supports you might use to make your party inclusive of a friend with autism:

• Ask the friend's mom or dad what triggers for upset the friend might have.  For example, my son hates the "Happy Birthday" song and flash photography.  If we give him a heads-up when we're about to sing, he removes himself to a quiet place until the cake is cut.  And if we turn the flash off when we want to take a group picture, we've avoided causing discomfort.
• Create a visual schedule.  When attending a party, it's a bummer to bring social deficits and anxiety.  Party-goers with autism will feel more control over the excitement of the day if there's some predictability built in.  The schedule doesn't have to show times, but it could.  Some simple pictures of eating, swimming, game playing, gift opening, or whatever is on the itinerary for the party in a pre-determined order will be helpful.
• Put the menu on the invitation.  If your friend with autism has any special dietary needs, perhaps mom or dad could send along alternate treats if needed.
• Understand that people on the autism spectrum have their limit for social excitement, no matter how enjoyable the company and/or event is.  If your friend comes late and leaves early, don't feel like you've failed in your attempt to include.  His/Her attendance at all is a major victory for both of you!

Second, going to extra mile to include a classmate with autism sends powerful messages to everyone involved.  Birthday parties are a celebration of the person of honor, but asking the birthday girl or boy to share her or his spotlight reminds them that it's not all about them.  That's a healthy shift of focus.  It reminds classmates that children with differences are people who enjoy friendship, too, even though they have to work a lot harder at those relationships, often with fewer social tools in their toolboxes.  And parents provide an example of leadership and acceptance when they encourage their birthday girl or boy to go out of their way to include.

Finally, children with autism don't get better at practicing social skills by sitting in an classroom or learning in their bedroom.  They need opportunities to generalize what they're learning about their friends with typical neurology in safe social settings.  You might even find that a family wants to send along a therapist with the child with autism to foster some of those social exchanges.  Jumping in at well-timed moments during a birthday party is a whole lot easier than trying to negotiate the pace of the playground at recess.

Thanks for giving some consideration to your child's next celebration.  Party on!

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 ...

The Gift of Friendship

I had the kind of conversation last week with a mom that throws me into fits of hate and hope. She told me a sad but familiar story of a misunderstood boy who spends his recess pacing the playground perimeter because he and his peers just haven't figured out how to have successful social interactions. And without intervention, they won't.

No one "just knows" how to interact appropriately with someone with autism. Certainly, there are those with a sensitivity and compassion that encourage them to continue trying in spite of pratfalls, but unless you have an understanding of that differently-wired brain and how it impacts the way that person experiences the world around them, you will struggle.

And children with autism can't be expected to be socially graceful.  A hallmark of their disability is lack of social understanding, so how can we as parents and teachers expect them to generalize to the playground skills taught in a speech therapist's office without coaching?

And this mom told me about how this boy was trying to initiate social interaction by hugging, which he was told specifically was unacceptable.  The poor child.  So while I hate that this downtrodden boy is despairing of his young life because he can't find a way to fit in, I have hope.  My hope springs from the results we've seen from our staff and student services.  I know that we can go into that school and work with its community to create a culture of acceptance, where glimmers of understanding and empathy shine more brightly than the darkness of despair.

But we can't do that without your help.  Please consider giving a year-end gift to Good Friend, Inc.  Your donation of $10 pays for us to send a Presentation Kit loaded with helpful resources for educators and families to the school that invites us.  A $25 donation pays for gel bracelets and personalized certificates for a classroom of students who learn to be good friends.  Only $50 covers the expenses associated with a guest lecture, where upwards of 100 college students at a time learn about best practices associated with interacting with people with autism.  And a $100 donation allows us to go to a school and provide an hour-long staff in-service. 

You can donate online through our website (right-click on the Donate button to open a new PayPal checkout window) or Cause.  Checks can be made payable to Good Friend, Inc. and mailed to 808 Cavalier Dr., Waukesha WI 53186.  Donations are tax-deductible to the extent provided by law, and should be postmarked by December 31st for this year's application.

Thank you for your generous support of our mission!