Autism: an explanation -- not an excuse

Even though Denise Schamens and I have been providing Peer Sensitivity Workshops through Good Friend for nearly six years now, we are still often met with resistance about explaining a classmate with autism spectrum disorder's (ASD) differences.  And we respect that.  But admittedly, it makes us a little sad, because we've seen the benefit talking about autism early conveys!  Yet when we learn the resistance is due to a misunderstanding about the intention of our services, we like to clear the air.

For example, a school's administration was encouraging parents of students with ASD to sign a consent form allowing us to contact them to discuss their child.  A spontaneous discussion began among the parents of students identified through their IEPs has having autism who had received the consent form.  While some families were all for the disclosure for the sake of creating positive interactions between students, one family in particular was discouraging others, suggesting that we would offer "excuses" for the "bad behavior" of students with autism.

Indeed, most children (and adults, for that matter) have some undesirable or bad behaviors, whether or not they have ASD.  And as caregivers, we have to strive to redirect or otherwise extinguish those behaviors, because we recognize them as chosen.  Yet in learners with autism, many of those "behaviors" are not chosen at all.  They are a product or a side effect of the differently-wired brain.  In other words, when similar undesirable behaviors are seen in a neuro-typical 5-year-old and an 8-year-old with ASD, we have to distinguish between the meaning of the behaviors and act (or better yet, preempt) accordingly.

When students with ASD have a functional behavior assessment, we caregivers have a head start in our ability to understand and explain unexpected behaviors.  Because autism is an "invisible disability", a neuro-typical student is not likely to associate a peer's unexpected behavior with a differently-wired brain.  But once we provide an explanation about autism and the diverse way that student experiences the world around him, the other students will no longer be mystified about the behavior.

It's not to say that an unsafe behavior like hitting would become acceptable.  Certainly, regardless of the communicative intent of the behavior, unsafe actions have no place in a classroom.  But explaining to the other students who've found better ways to cope with their frustrations or anxieties that there's a whole team of support people (educators, therapists, etc.) working together to teach the student with autism other coping strategies goes a long way.  Typically-developing peers could go from being hesitant or even fearful to being cooperative and helpful.

What have you learned about autism through the behavior of your person with ASD?

LAUNCHED: Campaign for New Film Project

We've been planning for this for a looooooooong time (just ask Good Friend co-founder Denise Schamens -- she'll tell you): the official start of our new elementary school film project!  It's hard to believe it's been three years since we started work on Choosing To Be a GFF for middle school, and that How Can I Be a Good Friend to Someone with Autism, our first film, was released nearly six years ago!

If you saw our award-winning middle school film, you know how much we grew as filmmakers between our first and second productions.  Can you imagine what our THIRD will be like?  We sure can.  And we have quite a crew assembled who will make it come to pass.

Want to be part of the action?  Check out and share our KICKSTARTER campaign!  We need people to catch the creative vision we have to make this film come to life.  We have less than 30 days (until the morning of July 17) to find $10,000 in pledges.  Here are a few things you should know about this platform and our specific project for We ALL Fit (the title of our upcoming film):

• Because Good Friend is a 501(c)(3) public charity, donations made through the campaign are tax-deductible as allowed by law.  However, if you receive a "Reward" through the campaign, the cash value of the reward is not considered tax-deductible.  Therefore, your acknowledgement from Good Friend will reflect the difference.
• If you pledge an amount other than those listed on our Rewards section, you may still be eligible for Rewards.  Email us for more info.
• Kickstarter uses Amazon Payments to collect pledges, but will not do so until after our campaign has ended (July 17) and ONLY IF we meet our $10,000 goal.  You do not need an Amazon account to make a pledge.
• Backers could be anywhere, and time is of the essence. Help us find them. Please spread the word via email and social media.

We would be negligent if we didn't offer shout-outs to some key players to date in this project ...

• Our creative team, including returning techies Dan Kallenberger and Tim Miller.  You two have been SO patient with us as budding filmmakers and incredibly supportive with our last two projects.  THANK YOU for being on board this time and bringing some fresh talent with you!
• Greg Marshall of Figureheads, Inc.  Our meeting was no accident, and this collabo is going to be EPIC!
• The participants of our May 2012 Community Conversation on Meaningful Inclusion in Elementary School. Your energy that night was inspiring, and made us realize there's NOTHING we can't accomplish when we as parents, therapists, educators, and administrators work together!  (And though I promised notes more than a year ago, they really ARE coming this week!)

Thanks to each of you for BACKING our mission!

So we're going on vacation ...

Especially when families have school-aged children, summers are a time for travel.  It takes extra bravery, flexibility, and planning if that family includes a child with autism, and there have been some key considerations I've taken as a mom that have reduced behavioral turbulence, so to speak.

1. You know that picture you have in your head of everyone doing the same thing at the same time and loving it?  Do yourself a favor.  Delete it (or at least be willing to Photoshop before publishing).  I used to look longingly at those families who were capable of creating and maintaining an elaborate itinerary.  But having tried that once, I realized that would not work for our family.  Flexibility is first.  Laughing at a National Lampoon's Vacation film before leaving can't hurt.

   

   Royalty Free Stock Photo: HAPPY FAMILY by Sharpnose

2. Be reasonable in your expectations.  I know all the experts talk about there being a Theory of Mind problem associated with autism, but I think Paula Kluth put it best when she insisted the perspective-taking problem lies with us neurotypicals.  How much sustained attention does your child have at home or school, where, presumably, there are familiar people and environments to promote such attention?  We assume that our vacation plans will be engaging, but they might just be overwhelming.  Are your child's basic needs (hunger, thirst, toileting, temperature regulation) being compromised?  Having favorite snacks and beverages on hand can help.
3. When you notice signs of distress in your child with autism, don't "Keep Calm and Carry On".  Fall back (while remaining calm).  And know where your "safe" or "soothing" places are ahead of time.  Believe it or not, some big theme parks have recognized the need for such spaces and will let you know where those are if you inquire.  I have noticed that if I've provided a space and time for decompression, my children (even as young as age 3) have accessed their built-in coping strategies.  Have a favorite stress reliever, like a comfort item, stress ball, or other fidget on hand at all times.
4. Put on your thick skin.  Your child with autism's coping strategies will look different than his neurotypical peers'.  (My son paces and makes sound effect noises when he retreats into his creative story-writing imagination.  My daughter lines up toys or draws, flapping her hands and humming as she imagines a much bigger scene than she perceives in front of her with her eyes.)  And when your loved one with autism has that meltdown, you'll get some stares.  This is a good time to Keep Calm and Carry On.
5. Be willing to divide and conquer.  I'm going to bring this concept full-circle.  While you might not convince everyone in the family that an activity or venue is worth enjoying, give yourself and your family the freedom and permission to find joy in separate places or ways.  If it's bringing an electronic device and headphones to a wedding, make that adaptation.  If it's finding a petting zoo  with dad and skipping the beach with mom, do it.  Getting that happy, smiling, all-together family photo might be tough.  But you'll get lots of individual photos of contentment.  And that's beautiful, too.

Autism Speaks has a great list of books and web-based resources.  What tips and tricks can you offer vacation-planning families that include children with autism?