Talking TO our friends with autism

When you're a "neurotypical" person orbiting the autism universe, you have to keep some things in mind:

• You are more alike than different.
• Don't force your way in to their atmosphere.
• Time your entry well.
• Be respectful of their planet.  (You sure do expect them to be of yours!)
• There's nothing to fear here, but plenty to learn.  Be a careful observer.
• Know when it's time to leave.
• Make a report, and ask your people with autism to provide feedback on your observations.
• Plan frequent return visits, modifying your interactions based on information gathered.

"Grand Universe" ©2005-2014 ANTIFAN-REAL

(Caution: Do not overthink this metaphor.  I am not suggesting that people with typical neurology are human and those with autism are not.  I'm simply expanding the "Wrong Planet" concept.  I mean no offense or disrespect.)

As Good Friend co-founder and fellow autism mom Denise Schamens and I have expanded our observations of and interactions with this autism spectrum cosmos, we have gained a better understanding and appreciation for the wonder and beauty it holds.  One of the most revealing discoveries we made was while attending an AUTCOM (Autism National Committee) Conference in Milwaukee in 2010.  For the first time, we beheld live the power of those who type to speak.  Attending a panel presentation on public policy advocacy, we were surprised that most of the presenters used some form of Augmentative and Alternative Communication.  Though sometimes conveyed with great effort, their thoughts were so sophisticated.  I marveled as I observed the outward autistic symptoms of unrelated vocalizations or dysregulated movement, often while the advocate continued typing insightful feedback to questions posed.  I was at once exhilarated and ashamed.

I was ashamed because I had made assumptions about intelligence outside that room that were more likely than not untrue and harmful.  I based my assumptions on observations: slow (or no) speech, uncontrolled body movements, facial affect.  I realized after this panel presentation both how little I understood and how much more I wanted to.  My "a-ha" moment encouraged me to dig deeper and presume competence.  Talking to people with autism instead of about them or to their support person extends dignity.  Our words matter -- and so do theirs.

Seeing Wretches & Jabberers deepened my appreciation for the plight of Tracy Thresher and Larry Bissonnette and other people with communication and movement differences.  And I was encouraged to infuse this appreciation into Good Friend's staff and student trainings, as well as in my parenting of my two neurologically-diverse children.

What does that look like?  It's encouraging self-awareness in your student with autism; because in order to advocate for him- or herself, your student with autism needs to understand what he or she needs.  It's expanding your concept of communication; because for young students who haven't found their voice, you owe it to them to discover their other "tells".  It's being patient while they're learning and not rushing their communication attempts, or otherwise disrespecting or discounting their input.

What "a-ha" moments can you share with readers to be encouraging?

9 Ways To Interact With People With Autism, Translated

A little over a year ago, I was a guest blogger for Crisis Prevention Institute.  Click here to check it out, and share with those who will be around your loved one with autism this month.  Here's to happy holidays!

Extending Dignity

So much as happened near and far in the past few days that remind me how much work we have to do  as an organization and as parents, and how much has already been done by so many autism advocates.  In the category of earth-shaking accomplishments, take Larry Bissonnette and Tracy Thresher of Wretches & Jabberers fame into account.  Today, these are internationally-known, world-traveling gentlemen who type to speak; but they were not presented with such an opportunity and training until they were well into adulthood.  They were presumed incompetent, unintelligent, and consequently institutionalized before they were able to relay their thoughts.  Through Gerardine Wurzburg's beautiful and powerful documentary, and the international speaking opportunities it continues to generate, Larry and Tracy are encouraging societies to extend dignity, presume competence, and realize that intelligence does not always look and sound the way we expect it to.

Find out more at http://dignityandrespect.org.

Shouldn't we be extending dignity to every human being around us, regardless of perceived intelligence?  Sometimes it seems as if only those who express their cognitive ability with reliable spoken language deserve such treatment.

I was encouraged by the hearts of the leadership and a select few parishioners at an urban church here in our area over the weekend.  Though this is a relatively small church, it has quite a few attendees with autism spectrum disorder.  One of the young men was ignored by a neurotypical peer recently when he attempted to make conversation, and that spurred the leadership to learn more about ASD so they could practice awareness, acceptance, and empathy within their own community.

I was discouraged by the words of a mother of adult twins with ASD, who described them to ABC News in this way: "In the spectrum, they're at the very bottom."  Now, I am more than willing to extend benefit of the doubt when it comes to out-of-context news editing.  But it made me sad to think that because New York City Marathon runners Jamie and Alex Schneider couldn't find a way to communicate verbally, they were "at the very bottom" in any way.  It seemed undignified to me, and I doubted they would describe themselves in a similar fashion, if empowered with the tools and training Larry and Tracy have been.

What's the point?, you ask.  Extend dignity.  Each of us is doing the best we can with the tools we have.  We all do better when we know better.  Assume those around you will do the same.  And do your best to bring them the tools that will inspire still more community members to extend them the dignity they deserve.

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!

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?

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?