Talking about an ASD Diagnosis

Following a recent Good Friend Peer Sensitivity Workshop, an observer remarked how she had seen similar presentations about autism, but the presenter never actually used the word "autism".  I thought that was much like talking about reproduction without mentioning the sex organs: not very helpful, and one leaves with more questions than useful information.  I believe parents of children with autism spectrum disorder (ASD) should approach "the talk" about autism in much the same way they would "the talk" about those reproductive and sexuality issues.  You don't divulge every detail at once, but continually reveal and unpack details as they become relevant.

Though this quotation is often attributed to Albert Einstein,
there is no evidence that's accurate. So let this say
what it will to you in light of this discussion topic.

For example, a 4-year-old with autism might be receiving some sort of therapy as an intervention for related symptoms.  It's okay to let your child know that the lady he sees at school helps him with making words.  A 10-year-old on the spectrum might be struggling with the dance unit in Phy Ed.  It's a great idea to explain that sometimes gross motor coordination (moving big muscle groups) is difficult for her, but she's amazing at memorizing details -- and both are tied to the way her brain is wired.

Because by the time a 13-year-old with ASD is contemplating suicide because he doesn't understand why he's so different and/or being bullied by his peers, you've missed some crucial opportunities to foster self-awareness.

Of course, not all adolescents with ASD will despair of their lives. In fact, the majority will not. However, a study published by Penn State College of Medicine's Angela Gorman, Assistant Professor of Child Psychiatry, and researchers, as reported by Science Daily (March 13, 2013), sets off some important warnings:

The researchers found that the percentage of children with autism rated by their parents as sometimes to very often contemplating or attempting suicide was 28 times greater than that of typical children, though three times less than that of depressed non-autistic children. The four demographic variables [Black or Hispanic, 10 years old or older, socioeconomic status and male] were significant risk factors, as well. 

"That was probably the most important piece of the study," said Gorman. "If you fell into any of those categories and were rated to be autistic by a parent, the more categories you were a part of increased your chances for experiencing suicidal ideation or attempts."

The study also notes that children with ASD who were teased or bullied were more likely to consider or attempt suicide.  An essay in this month's Good Housekeeping magazine by Jackie Mercurio is a painful vignette of that reality.

If you've been following any of the #IMFAR2014 chatter, you might have gleaned that Marsha Mailick, director of the Waisman Center (Madison, Wis.), spoke in her keynote address at the International Society for Autism Research Conference about parent positivity as a powerful determinant of quality of life for adults with ASD, per her research.

What does all this mean for you as a parent?  In my opinion, your child has the right to know about his or her autism.  But I encourage you to keep some things in mind when you decide to have "the talk":

• Your child will take cues about how to feel about autism from you.  If you're not okay with it, don't expect him/her to be, either.
• Keep your side of the conversation hopeful, positive, and accepting.  As you explain a struggle connected to autism, be sure to remind about a strength, too.
• Validate your child's feelings.  Unless you have autism, too, you don't really know what it's like to live with autism in your body.  Don't minimize what your child is experiencing, whether physically or emotionally.  
• This is an ongoing conversation.  Look for opportunities to add depth, connection, and meaning to the foundation you lay.  Maybe read Jennifer Elder's Different Like Me or listen to The Figureheads' "We ALL Fit" or visit Carly Fleischmann's Café.
• You have LOTS to learn from your child with autism, too!  Often times, the one who needs perspective-taking is the one who does NOT have autism.  We each assume others' sensory experiences and social preferences are similar to our own.  That can be dangerous.
• Look for ways to help your child find his or her "tribe".  It's about the coolest thing ever to observe the interactions between people of similar neurology and realize they have a profound culture all their own.  Encouraging inclusion doesn't mean that you remove your child's autistic manifestations to "fit into" a world created by the majority neurology.  It means you recognize those manifestations of autism and consider them across environments, encouraging systemic changes that will foster meaningful participation.

I recognize that telling your child about his or her autism is your right as a parent.  Please -- consider your child's right to self-awareness and the importance of self-advocacy as you decide what information to sequester.

And let's learn from each other!  For those with autism, do you remember being specifically told you had been diagnosed with ASD?  For parents, do you have some encouraging remarks about your experience with your child on the spectrum learning about his/her neurology?  For educators and administrators, how have you seen self-awareness benefit your students with ASD?

Register for the premiere of 'We ALL Fit'!

We look forward to seeing you at the Red Carpet Premiere Party of our newest autism peer sensitivity film, We ALL Fit!  But your admission to the May 28 event requires a ticket, and you can't get a ticket unless you register online here.  Have the names of your guests ready to enter in the form.  If you want all the tickets for your party mailed to a single address, there's no need to complete the address information for other guests.  Tickets will be mailed May 19.

Doors open at 6:15, and the program begins at 6:30 p.m.

This hour-long event hosted at Marcus Majestic is intended for those age 4 and up.  Formal attire is welcome, but not required.  Popcorn and soft drinks will be served, thanks to the generosity of our sponsors: AutoZone, Wisconsin Vein Center, The Ability Center, and Ford Construction Co.

Email chelsea@goodfriendinc.com if you have any questions.

It's coming! The release of "We ALL Fit" is less than four weeks away!

We at Good Friend, Inc., could not be more excited about the premiere of our latest autism peer sensitivity film, "We ALL Fit"!  Never has one of our products been the culmination of so much research, collaboration, and experience.  With careful consideration of the learning styles of intermediate childhood (ages 6-10), we put together a multimedia presentation that would meet learners where they're at.  With a Community Conversation about Meaningful Inclusion in Elementary School, we covered social emotional topics teachers and parents believed important.  With a research study illustrating what students still needed to know after our services were delivered, we loaded this film with tools.  We field tested and tweaked and tested again.  We gathered feedback from students and teachers and researchers.  And this is it.

On Wednesday, May 28, from 6:30-7:30 p.m., nearly 250 people will assemble at the Marcus Majestic Theatre in Brookfield, Wis., to see "We ALL Fit" on the big screen.  We are currently registering cast and crew and their guests, but will open the event up to the general public in just six days.  Registration will be required to procure a ticket, and a ticket is required for admission.  There is no fee for the ticket.  (Event sponsors such as AutoZone are offsetting costs.  Sponsor opportunities are still available.  Email chelsea@goodfriendinc.com for more info.)  Since the target audience for the film are students in K-5th grade, the event is meant to be family-friendly.  Our cast and crew are encouraged to wear their finest evening wear to walk the red carpet.  So if you want to go all out, too, feel free!

Here's what inclusion expert Paula Kluth, Ph.D., has to say about "We ALL Fit", which is being considered by film festivals in Toronto and Chicago:

"Another useful classroom resource from Good Friend, Inc.! This short video not only offers ideas for building community in the classroom, but provides opportunities for all learners to build communication, collaboration, teaching, and advocacy skills. With each viewing, every member of the classroom can learn something new about getting and giving support, about friendship, and about true inclusion."

How better to mark Mental Health Awareness Month than with a healthy dose of "We ALL Fit"?!  Check out the music video this week, Children's Mental Health Awareness Week, which now boasts nearly 16K views and more than 300 Likes.  Use it to start a conversation in your class or family.  And keep watching the blog all month for more information!

Six Weeks of Pure Awesome

March and April are hands down Good Friend, Inc.'s busiest months.  We're right in the thick of our two big annual fundraising events: the ongoing Highlight It Up Blue campaign, which this year involves four stylists and runs through April 23; and our Hoa Aloha Autism Awareness Bowling Event, coming up on this Sunday, April 13.

If you indicated you're "Attending" our Highlight It Up Blue Facebook event, you've seen some of the pictures.  We've doubled the number of schools participating in this year's campaign, and again have had to turn some away (sorry!) because so many communities are lining up to support autism awareness, acceptance, and empathy.  To date, here are the top five leaders and their gross receipts:

1. Rose Glen Elementary (Waukesha) - $985
2. Waukesha STEM Academy-Randall - $725
3. Park Lawn Elementary (Oconomowoc) - $600
4. Mukwonago High School - $520
5. Butler Middle School (Waukesha) - $470

Waukesha STEM Academy-Saratoga and Waukesha West High School also participated.  We'll be at Heyer Elementary (Waukesha), Edgerton Elementary (Hales Corners) and Waukesha South High School before it's all over.  THANK YOU for helping push us toward our goal of raising $7,000 to facilitate our staff and student trainings in elementary and middle schools!

How are you involved in this Sunday's BIG event at New Berlin Bowl?  We have some 200 bowlers registered on teams, plus more than a dozen volunteers and nearly 100 donors.  There are lots of opportunities for you to get in on the action!  Thursday is the last day to register or donate online.  If you show up on Sunday, we'll try to get you on a lane as they're available.  The morning (10:30 a.m.) start time should still have openings.  Even if you're not bowling, you won't be bored!  Check out some of our silent auction items:

two different "Beach Day" buckets, starting bid = $10

"Kids' Entertainment" basket, starting bid = $45

This is one of eight images in the framed 28" x 34" "Hearts" print, starting bid = $60

Green Bay Packers autographed football, starting bid = $100

pair of admission tickets, starting bid = $45

"Outdoor Fun" package, starting bid = $10

"Indoor Fun" package, starting bid = $20

And our raffle items include this stunning pair of diamond stud earrings from Diamond Nexus and a VIP game package for four from the Milwaukee Brewers!  Tickets are $5 for one or $20 for five.  Choose which prize container you want to put your tickets in.  Need not be present to win.  Drawing is at 3 p.m.

All of this goodness facilitates the good work of Good Friend: going in to schools, colleges, universities, and summer camps to lay the groundwork for positive, healthy social interactions between children with autism and their peers.  If you need more information on any of these RIGHT NOW opportunities, please contact chelsea@goodfriendinc.com, or call 414-510-0385.

Autism Awareness Preparedness

World Autism Awareness Day is just over four weeks away.  How are you preparing?  In my house, I'll start bringing out my exterior blue light bulbs and hanging the Autism Awareness ribbon garden flag in a couple of weeks.  I'll get my Highlight It Up Blue hair extensions and wear my button on my jacket.

I love it when schools plan their activities thoughtfully.  While many of us are "aware" of autism, how can we make that meaningful?  How do we hone awareness to understanding, and channel understanding to acceptance?

At one school, the parent-teacher organization has decided that Good Friend's curriculum is worthy of an annual budget item.  They are so prepared for our return that our Awareness-Acceptance-Empathy message has become part of their school culture.  And that culture is inclusive of students with autism spectrum disorder (ASD).

By giving the school community a common vocabulary for discussing ASD, we've also encouraged budding self-advocates.  One student, pictured below, took the pole position in the presentation for his grade level this year.  He came up to the front of the class, explaining what autism is like for him.  Of particular wonder was his self-coined term, "brain overload".  He said that when there's too much information coming in (as sensory input), he gets confused and needs some quiet time to get re-organized.  He shared his strengths and his interests, encouraging classmates to look beyond some of his autistic symptoms to see the person who wanted connection.

And it was our pleasure to provide a positive platform for self-disclosure today for another student with ASD in middle school.  We don't want to "out" a student with autism in front of his peers in 6th-8th grade, but give him an opportunity to share (or not) about how his differently-wired brain impacts him.  The student knew we were coming and the topic of our presentation.  We took our cues from him as we discussed the science of autism with the class.  And while he was participating by answering general questions throughout the first 20 minutes, at minute 23 of 60, he began to connect himself with ASD in front of his classmates.  Following the 16-minute screening of Choosing To Be a GFF, the last third of the Individualized Classroom Presentation was so very meaningful as he continued to engage.

Certainly, those middle schoolers are aware of autism.  And they understand.  Time will reveal the level of acceptance they extend.  And we look forward to hearing about it!

Kids say the loveliest things!

Like many other states, Wisconsin has had a tough winter.  In fact, it interfered with preparation for a recent student service at an elementary school.

Generally, we send a presentation kit to the host school ahead of our visit so staff and students can prepare to receive Good Friend's Awareness-Acceptance-Empathy® message.  Part of the kit for students in grades 2 through 5 participating in a Peer Sensitivity Workshop is a bundle of blank, colored notecards.  Teachers distribute these ahead of time and encourage students to write their questions about autism on the cards anonymously.  We collect the cards before students watch our video and review them so we can address any topics that haven't already been covered during the workshop in those last 15 minutes.

But on this day, the students had enjoyed a four-day weekend because of the bitter cold.  The staff didn't have time to distribute the cards and discuss their purpose.  To save time, I encouraged the students to write down any questions or comments they had for me during or immediately after the workshop, and then requested that the teacher return the cards to me so I could address any remaining questions.

There are few things as precious as a young child's handwriting, so you need to see these for yourself!

Kids don't just "get it", and they so appreciate when someone helps them understand!

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?