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32 Flavors

This is a post by Autism Speaks’ Assistant Director of Science Communication and Special Projects Leanne Chukoskie, Ph.D.

I have always been a big fan of ice cream, however I used to find the parlors that offered 32 flavors to be somewhat overwhelming. My experience while on summer vacation with my nephew, who has a severe egg allergy, makes me grateful for the many options. I’m especially grateful when the employees take our request seriously and indicate which flavors have absolutely not come in contact with egg. Soft serve vanilla appears to be a safe bet in most places but I am sad at his only and somewhat uninteresting option when other kids get to order flavors sounds like they have leaped from the pages of a Roald Dahl story, like Birthday Cake, Cotton Candy, or Moose Tracks.

Flavors and variety was a theme of this trip. The main event of the vacation was a party, the kind of classic summery party I hold in memories of my youth with ample quantities of delicious summer salads, chicken, grilled hot dogs, fruit, fudge and (of course) ice cream. The children romped about the yard, and adults relaxed in the shade, catching up with each other over cold drinks. The reason for the event was my niece’s 4th birthday, but that was merely an excuse for the large cadre of family and friends to gather and enjoy the day.

In addition to the chatter with uncles, aunts and family friends, I stole some time to watch the kids’ interactions. At least three of the 30 plus children attending were diagnosed with an ASD, including my nephew. How were they managing in this melee? Any signs of sensory overload? Anyone feeling excluded from the fun?

When my sister-in-law called the group to engage in assorted of games and activities some children came running immediately. Others in this small tribe looked to each other for cues. Is the game worth joining or would it be better to continue playing in the treehouse?. With multiple flavors of activity to entertain all kids, some children elected to continue their current play in the sprinkler or with the racetrack. This was perfectly acceptable. Especially since the kids playing separately were not alone, and they were not necessarily the children on the spectrum. This was intriguing to me because for the most part, these children did not know each other so the playmates and their individual mannerisms were all new, and not necessarily comfortable.

Children’s contentedness, much like ice cream and also autism, comes in many flavors. All flavors were welcome at this party, of course, but some aspects of the party may have inadvertently favored some over others. One of the “older” boys was quite literally outraged by the party rule that children 6 and older could take only 5 items from the piñata (lest nothing be left for the younger, presumably less effective gathers). Righteous indignation lasted for a good hour, fuming as he watched multiple 4 and 5 year olds carrying more loot than could be held in a small bag, much less enjoyed in a day. I also watched as someone else—another child—offered comfort and agreement that the rule was unjust and should be changed next time.

The child-initiated inclusion, acceptance, and comfort I saw at the party reminded me of a promising peer-based therapy. Connie Kasari, Ph.D. (UCLA) and colleagues have demonstrated the effectiveness of peer-intervention to bring children with ASD into more social interactions on the playground (see more here). The children with ASD in these studies as well as those at the party were in mainstream schools. In considering this and in a broader context “party therapy” for all the kids attending, I thought about how a child with more severe communication and medical challenges would respond to the environment of this party. The many choices of things to do and the sensory riot could be escaped, but with the escape so too would go social interaction. Any therapy or interaction directed at improving social communication is less likely to succeed when other behavioral or medical challenges interfere with learning. Such is also the case when not “therapy” but merely play is the desire of the day.

Autism Speaks has established in its strategic plan for science a specific goal to develop ways to rigorously identify meaningful subtypes of ASDs that predict response to various types of treatment. Our ability to quickly identify the various “flavors” of ASD will speed effective treatments for the affected child.

Having choices is only useful if you know how good each choice is likely to be. The trick with ice cream is easy—simply request a sample of whatever you are considering. With autism therapies, there is no simple trick in choosing, but hope lies in identifying subtypes or “flavors” of ASD so we can match these with the most effective therapies, tailored for that subtype. Much as the list of ingredients that was essential to select the right ice cream for my nephew, the research we support aims to develop the profile of symptoms that results in the best outcome for each type of therapy. By combining research on treating different subtypes with a focus on developing new therapies for subtypes that have yet to have good outcomes we seek the knowledge to allow us to tailor treatment plans to suit each individual’s unique needs, for each and every flavor of ASD.

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  1. Steve
    July 22, 2010 at 1:13 pm

    Peer-based intervention.

    About 15 or so years ago I had a 4-5-6 SDC class at a K-6 public school. One of my 6th grade students, Mike, we thought, was ready for some mainstream classes. One teacher was Bev, at the end of a very long and almost “famous” career (old school strict, but very fair and students knew she cared). Her style was rather formal but she had fun with her students too. There were 3 6th grade classes. Students were glad to be in her class after a few weeks. She had such excellent classroom management (strict) that students got to do some very sophisticated activities that most other 6th grade teachers would run away from screaming. She was very organized and her classes had lots of “enrichment” activities. Bev was a *tell it like it is* lady, up front, honest, at times even blunt and if you had a problem with that well it was YOUR problem. Being male, I liked it. We did not waste time dancing around issues.

    She volunteered to take Mike in.

    The principal was very special ed “aware” and he “got it”. He always made time to talk to me and he set as a school goal for the year better inclusion of SDC kids. We also had a 1-2-3 SDC class. I had told him I wanted Mike included on a trial basis in more 6th grade mainstream classes. He had few academic challenges.

    The 3 6th grade teachers were well respected and the young principal appreciated their enthusiasm for new things he wanted to do. He asked the 3 of them to consider which one might be best for Mike. Bev volunteered.

    So Mike started joining her classes such as math, reading, writing. One at a time. Bev had her students sit in clusters or tables of 6. She picked 6 of her very “best” girls who she thought could best ‘understand and tolerate Mikes differences.

    It was a big success. Bev prepared the girls with a woman to woman chat. (She told me all this later). Mike had some personal habits like nose picking. When he did such things the girls did not have a fit and disrupt things like one might expect. One or two of them would let Mike know that was not cool and that maybe he could stop it. He did.

    Very quickly Mike spent all his time with his “other” class except for math. It became routine and Mike knew what was going on. If there were schedule changes, he just told me and I said fine. Go. He was becoming self reliant! I purposely seldom checked on what might be happening, and soon Bev did not need to alert me to any special activities. I _feigned_ a “whatever” attitude with Mike.

    It turned out that the girls were experts at interacting with Mike without being deferential or condescending, or treating him like a 2nd grader. Bev checked in with them regularly and offered praise and support and some suggestions of ways to help Mike fit in.

    At the end of the year I gave her a plant for her famous home garden. And told her once more how grateful I was for taking Mike “in”.

    Then she became embarrassed and told me that she initially took Mike because the principal had more or less “told” the 3 teachers: “can someone do it?” in a nice way but they knew not to say no. Bev said she knew back then it was the right thing to do and she WAS the best class for Mike to join up with. But she really did not want to do all the “work” involved. But she said she did it anyway. And then she got very serious, self-revelatory (rare for her), and told me it was one of the best experiences of her career. She thought she had gained so much as a person and a teacher. And the whole class grew and developed mature attitudes about “different” kids. They became less aggressive and more polite! To an extent that was not at all typical for even HER 6th graders.

    I was bowled over. What an amazing lady. That was her last or second last year before retirement. She had the clout to say NO. But she took a risk and Mike benefited beyond all expectations.

    POSTSCRIPT: A year or so ago I was shopping at BestBuy for a new laptop. I saw Mike working there. We chatted. He seemed happy there and knew everything about computers, typical of many ASD people. Other employees noted that I had talked to him for like 10 minutes and asked me, “How do you know Mike?” They also emphasized what a good employee he was. And they liked him! He was fun! I very gently asked how the staff handled Mike’s now rare sensory overload meltdowns. I was told, “Oh. he just goes out the back door and walks for 10 or so minutes and comes back. It is NO problem.”

    BestBuy, by the way, actively promotes accommodations and has been recognized for its accomplishments in this area.

  2. Blair Kirchner
    July 22, 2010 at 6:36 pm

    What a thought provoking post.

    Check out the benefits of MSE’s http://www.cdhaf.org

    They are hosting a conference in Oct. The conference will bring together experts from over 12 countries featuring more than 30 renowned speakers who will offer thought-provoking lectures and workshops concerning the use of Multi Sensory Environments (MSE) and sensory enrichment. For the first time a large section of the program will be devoted to the brain, its development, plasticity and the impact of the environment. Our keynote speaker on this theme will be Dr. Jill Taylor a neuro-anatomist who at age 37, experienced a rare form of stroke, and chronicled her dramatic recovery in her bestselling book My Stroke of Insight, A Brain Scientist’s Personal Journey.www.isna2010.org

  3. July 22, 2010 at 8:13 pm

    Hello guys,
    We are Johnson and Wales (Providence) grad students trying to raise Autism awareness through social media. Please join our Cause.
    Thank you,

    James, Jenna & Tatiana

  4. July 22, 2010 at 11:59 pm

    Steve,
    I love your story about the inclusive program Mike attended. We have a similar program in my son’s elementary school. He loves it, and since so many of the kids are exposed to him and his 6 other “special” friends in class, they are treated with dignity, respect, and appreciation. My son walks around that school like he owns it, feels right at home, and has grown socially in leaps and bounds as a result. He is quirky, and I have no doubt the teasing will happen as he gets to middle school. He starts 4th grade in September and I am convinced he is the well-adjusted boy he is today because of the inclusive program, the acceptance he has found in his school, and the standard the “typical” kids set in his classroom that motivates him to excel while still being himself.

    I wrote and illustrated a book about his early development (Tyler’s Magic Word Box), inspired by the progress he made in kindergarten and 1st grade. I also have a facebook page, “words 4 autism” where people share success stories and stories of hope with other parents. I would love for you to visit and share your story there, if you are willing.

    http://www.facebook.com/pages/Words-4-Autism/323956325331?ref=mf

    Thanks for the story. I hope more programs and educators adapt ways to integrate our kids and spread awareness and acceptance.

    Gilda Horgan

  5. July 23, 2010 at 11:07 am

    Our school system has inclusive programs starting at age 2 for children with autism. Our children with autism are accepted and definitely part of the school. They participate in plays and chorus, after-school programs and parks and recreation programs in the county. It’s the way it SHOULD be!!

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