Pretending to be "normal"

Whether your neighborhood hosted trick-or-treaters already, or is gearing up for the swarm of costumed kiddos later this week, this is a time when many of us celebrate our children pretending to be other than who (or what) they are.  Sometimes the costumes are so elaborate or concealing, we cannot recognize our pals.  And some characters even assume their costumed persona while at the party or collecting candy.  There is, of course, no expectation that such charades will continue past Halloween.

Unfortunately, some individuals with autism feel as if we neurotypicals are asking them to engage in a perpetual charade.  Author and advocate Sarah Stup writes, "With too much asking us to be normal, we feel like impostors."  While I loved Miss Montana (2012) Alexis Wineman's platform for the 2013 pageant, "Normal is just a dryer setting," I recognize that as a parent I once had a goal for my children with ASD to be "normal".  I wanted them to be unrecognizable from their peers in the classroom.  What a foolish and narrow-minded aspiration.  One I'm glad the parents of Thomas Edison, Albert Einstein, and other great minds, whose genius was inextricably tied to their suspected autism, didn't hold too tightly.

I am not suggesting that we don't push our children to be the best they can be.  Rather, I am insisting we respect who they are.

Consider how we all have to differentiate our choices based on environments and audiences.  When you're in the library, you respond to your environment differently than when you're at a parade.  When you're dressing for the symphony, it's likely in more formal attire than for your son's soccer game.  When you're interacting with your 8-year-old child's friends at her party, you adjust from the way you were interacting with your colleagues at work hours earlier.  Some of these adaptations are uncomfortable for us, and we breathe a sigh of relief when we can be "ourselves" again with the ones we love on our own "turf".

Yet those are all environments and circumstances that we choose.  Granted, we have more autonomy as adults, which is developmentally appropriate.  Naturally, children have less authority.  But they should not have less entitlement to being who they are.

If you want your child to be in a Scout troop to enhance his or her social ability, be sure your child has adequate support and preparation to participate in manner consistent with existing function.  If you want your child to be part of the extended family portrait, allow him to wear clothes that he prefers.  If you believe your child with autism should attend her cousin's wedding, don't expect her to be able to sit for an amount of time beyond what she's demonstrated to be comfortable for her.

These outings are all lovely ideas, and may have real benefit.  But think inclusively: What can you share with event coordinators that might make the event better received by everyone?  What adaptations can you make to respect your loved one with autism's limitations while leveraging her strengths?  Because asking your loved one with autism to pretend to be "normal" (whatever that means) is just not dignified.

So enjoy the extra-ordinary masquerade that is October.  But if you're still asking your student to don a figurative mask beyond the 31st, examine your motivations and appreciate the real person behind the facade.  And encourage others around him to do so as well.  Together, you can help him be the best him he can be!

"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!

Bullying vs. Disability Harassment

It's a busy month for Good Friend, Inc. - and with good reason.  October is National Bullying Prevention Month.  While Good Friend's autism awareness-acceptance-empathy services for staff and students aren't specifically about bullying, they are intended to prevent disability harassment.  So for as long as there isn't a Disability Harassment Prevention Month, we'll piggyback on the bullying movement.

What is the difference between bullying and disability harassment?
The definitions of bullying are as varied as the manifestations.  Many indicate that bullying behavior must be intentional and repeated.  We take issue with these qualifiers, because they seem to excuse the behavior of the student or staff member who was "just kidding" when they were teasing a child.  Furthermore, when a child hears similar jibes over and over, though they come from an individual only once, does that make the insult any less painful?  On the contrary -- when a child hears negative messages from several people, the false validity of these hurtful comments starts to erode feelings of self-worth.

Disability harassment is basically bullying on the basis of one's different abilities.  It comes in just as many (and more) forms as bullying, but targets the perceived weakness inherent in the disability.  In the cases of students with autism, those who harass often do so because they believe the student with autism has chosen or can choose how he/she responds to the environment.  In other words, they tease self-regulating behaviors, social missteps, communication differences, sensory processing differences, etc.  Sometimes it's with words.  Sometimes exclusion.  Sometimes it's physical.  ALL the time it's WRONG.

© 2005 iStockphoto LP. All rights reserved.

In fact, disability harassment is a violation of three federal laws: the Individuals with Disabilities Education Act (IDEA 2004), Sec. 504 of the Rehab Act (1973), and Title II of the Americans with Disabilities Act (1990).

Why does it matter?
While definitions of bullying may differ, and regulations regarding bullying may vary on local and state levels, federal law regarding disability harassment trumps any confusion or ineffective practices.  For students, this becomes a matter of consideration in their Individualized Education Plans (IEPs).  If a student is afraid to go to school, or is placed in a more restrictive environment to "protect" against bullying behavior, this could be a denial of a free, appropriate public education (FAPE) in the least restrictive environment (LRE).  This is a civil rights issue -- not "kids being kids" or any other invalid attempt at rationalization of criminal behavior.

If you believe your student is being harassed, forward this document to your administrator with a specific example of the harassment and be sure to follow up.  If the school is not responding effectively, here is a chain of command for filing complaints -- all the way up to the Department of Justice.

Students with autism spectrum disorder have a right to be safe and respected at school.  Especially in those instances when they cannot speak up for themselves, we must be their voice and advocates.  Statistics indicate that nearly half of students with autism are bullied in school.  Assume the risk is real and do what you can to prevent it, or do what you must to correct it.  Let us know if we can help, and tell others what you're doing; share resources, encouragement, and positive stories!