Marge Blanc, MA, CCC-SLP
Autism Asperger’s Digest | March/April 2013

We in the autism community know many things about echolalia. We know that it’s part of the profile of kids with autism spectrum disorder (ASD). We also understand that echolalic language functions in many ways, particularly communication. What is not widely understood, however, is how integral echolalia is to the language development process. This article will shed light on the how and the why—and with that knowledge, our community will be better able to help kids with ASD develop from echolalia to self-generating conversational language.

The “Why” of Echolalia: Gestalt Language Processing
Speech language pathologists (SLPs) have historically recognized echolalia as a natural part of the language development progression for half of all children. Known as gestalt language processors (Peters 1973, 2002), they include both neurotypical (NT) kids and spectrum kids (Prizant 1983). Compared with kids who are born analytic processors, NT gestalt processors develop self-generated language later, but do catch up. Spectrum kids progress from echolalia to self-generated language later still—but go through the same process. This natural path isn’t always easy for spectrum kids, and the resulting grammar system isn’t always complete, but researchers found that gestalt language processors use echolalic language as the source material for developing their self-generated grammar (Prizant and Rydell 1984). Like their NT counterparts, spectrum kids make the transition naturally—although at an older age, more painstakingly, and sometimes less completely.

That echolalia leads to self-generated grammar may sound surprising at first, but consider how little boys use a holistic style of speaking and how they gradually shift to a more specific style over time. Starting with a sandbox-type stage and action-figure speakers, NT boys (and some girls) deliver long, blurry monologues. Drama abounds, and even though the specifics are vague and hard to understand, listeners can usually get the gist of the action. These strings of sound, the gestalts or “wholes” of the gestalt language processor, have poor word boundaries, making them hard to understand, but gestures and intonation add meaning. A story is told, if indistinctly.

The “How” of Echolalia: Delayed Analytic Language Processing
Over time, these gestalt language processors, NT young boys (and girls), develop more precision in their language processing, and from their long strings of sound emerge shorter phrases that people around them acknowledge as real language. If we listen carefully, we discover that these phrases are parts of the former monologues, now shorter and clearer, the results of a process of extraction known as mitigation. Over time, these children break down phrases into single words and enter the analytic stage of language development. They then use single words to communicate other thoughts and quickly begin constructing two-word combinations of the isolated words. Sounding like much younger analytic children, these NT kids then combine words into short phrases using basic grammar, and later, more complex grammar.

The early research of Barry Prizant, Patrick Rydell, Amy Wetherby, and others (Rydell and Prizant 1995; Wetherby 1986) showed this process to be the same for gestalt language processors on the spectrum—and just as natural—but often incomplete and very delayed compared with NT gestalt language processors. This means that these spectrum kids do not exhibit a language disorder at all, but merely a language delay.

The Stages of Natural Language Acquisition

As described in Natural Language Acquisition on the Autism Spectrum: The Journey from Echolalia to Self-Generated Language (Communication Development Center Inc, 2012), there are four primary stages of language development among gestalt language processors. They are summarized below, with two ongoing examples to illustrate the progression. In reality, mitigation is happening with many phrases simultaneously.

Echolalia Then and Now
Kids with ASD have a great variety of auditory inputs that both enhance and complicate the process. When the language around them is more about the dialogue of characters like Goofy and Buzz Lightyear than about adult conversation, echolalia is delivered with great drama: “To infinity and beyond,” and “Buy them wherever DVDs are sold!” It is difficult to see the communicative value of movie talk, or see it as a step in the right direction when the phrases we hear sound like movie snippets and computer game directions: “Back off!” or “Game over.” These may seem minimally useful in moving a child toward flexible language development, but some of the classic lines from the past were little better. Kids then—and now—need more than unintentional language to hear and mitigate.

Consider this: the research on echolalia was done in a different era, and even though echolalia seems more prevalent today, its place in the language development process is the same. The language exposure between then and now is quite different. A few decades ago, kids didn’t have ready access to movies and had to rely more on the spoken word in their homes and schools. Mitigations were defined by that language exposure; mitigations today are still defined by language exposure. Our place in our children’s language development is just as crucial as it was decades ago—even if it is harder to understand.

Understanding Our Role
It is not surprising that the phenomenon of echolalia causes us to scratch our heads in confusion, close our ears in consternation, or try to ignore it. We try to teach other language, or put the echolalia into useful scripts with the hope it can be “replaced by spontaneous language” (Henn 2012).

But these strategies fail to address the natural development process of spontaneous language, which is a complex weaving of grammar, vocabulary, conversation, and narrative. For the gestalt processor the ingredients for grammar—and even vocabulary and social reciprocity—emerge from the child’s own echolalia.

Echolalia is foundational, and the best language experiences for a child match his communicative intentions. The language we provide each child needs to capture his heart and speak to the essence of that child. Early language gestalts that we model for our echolalic children provide material for intentional communication, plus the stuff of later grammar and vocabulary, if we do our jobs right!

Foremost, we must provide spectrum kids with appropriate sensorimotor supports and then with the right language models so they can extract kernels from them and eventually build a language system of their own. For 15 years the SLPs in our clinic at the Communication Development Center have individualized the supports and the language contexts to help each child accomplish this. An SLP uses the best practices of social reciprocity, fun, and communicative intentions along with the right language experiences for each child. For the echolalic child, that means readily mitigable gestalt language and an absence of competing inputs and expectations such as scripts, “canned” sentences, overused questions, and cued phrases.

Take-Home Lessons in Language Development
>    Know that echolalic language provides spectrum kids with meaningful language contexts. It is the language “soup” from which useful phrases will be extracted (mitigated) when the time is right. The process works if the child hears many similar utterances in the environment around him and discovers the commonalities. He can then break down large chunks of language into smaller, useful phrases. But it is up to us to inventory the child’s language contexts (e.g., movies, books, everyday language at home) and supplement them with planned language experiences the child can echo and use meaningfully.
>    When the child’s expressive language includes a small assortment of phrases, he can mix them up. This allows the child to create semioriginal sentences. For instance, “Come on, guys—let’s get out of here!” and “Coming soon—to a theater near you!” becomes “Come on, guys—to a theater near you!” This is how mix and match works in real life! And once your family hears an invitation like this one, or something equally cute, they will no longer think of echolalia as a language disorder, but will realize they are witnessing the process of gestalt language development!
>     Echolalia signals a delay, not a disorder. The reason spectrum kids are so misunderstood, and the reason echolalia seems like a symptom of a language disorder, is not just that it sounds like Goofy or Buzz Lightyear, but that mitigation is so delayed. For NT kids, the process passes under the adult radar because the kids are so young and physically immature that their long gestalts sound like a blur of melody that is impossible to understand. Our echolalic kids with ASD are older, however, and since their speech is better, we recognize the words, and, to our dismay, they are often movie lines.

Not to despair: now that we understand why our kids sound like they do, we can applaud the process and think about how to supply more language gestalts to supplement their language exposure.

Take Heart
It’s time to take heart from the most well-known, self-described mitigator of echolalia and member of our autism community, Temple Grandin. Interviewed on a radio program in 2005, she offered encouragement for every parent who despairs over echolalia. The interviewer said, “Tell me about the process you went through to become as remarkably verbal as you are. You write early on that people said that you were a tape recorder. You had certain phrases that you said over and over again. And listen to you now!”

Grandin responded by talking about her own cognitive style. “Well, what happens is…as I get more and more phrases on the hard drive, I can recombine them in different ways, and then it’s less tape-recorder like…it’s gradual learning…you gradually just keep getting better and better and better.”

And getting better and better is the spontaneous language we all want our children to develop. With a better understanding of how the natural process works, we can help them to achieve it!

BIO

Marge Blanc, SLP, directs the Communication Development Center (CDC) in Madison, Wisconsin, which specializes in communication services for gestalt language processors and children who benefit from sensorimotor supports. Marge’s articles are available at www.communicationdevelopmentcenter.com.

References
Grandin, T. 2005. “Conversations with Kathleen Dunn,” Wisconsin Public Radio, NPR, February 18.

Henn, J. 2012. “Using Echolalia as a Bridge to Communication.” Autism Asperger’s Digest, May/June.

Peters, A. 1983, 2002. The Units of Language Acquisition. Cambridge: Cambridge University Press. http://www.ling.hawaii.edu/faculty/ann

Prizant, B. 1983. “Language Acquisition and Communicative Behavior in Autism: Toward an Understanding of the ‘Whole’ of It.” Journal of Speech and Hearing Disorders 48:296–307.

Prizant, B., and P. Rydell. 1984. “An Analysis of the Functions of Delayed Echolalia in Autistic Children.” Journal of Speech and Hearing Research 27:183–92.

Rydell, P., and B. Prizant. 1995. “Assessment and Intervention Strategies for Children Who Use Echolalia.” In Teaching Children with Autism: Methods to Increase Communication and Socialization, edited by K. Quill: 105-129. Albany, NY: Delmar Publishers.

Wetherby A. 1986. “Ontogeny of Communicative Functions in Autism.” Journal of Autism and Developmental Disorders 16 (3): 295–316.

Resources
Blanc, M. 2005. “Finding the Words: To Tell the Whole Story—Natural Language Development on the Autism Spectrum,” Autism Asperger’s Digest, May/June, July/Aug, Sept/Oct, Nov/Dec.

Blanc, M. 2012. Natural Language Acquisition on the Autism Spectrum: The Journey from Echolalia to Self-Generated Language. Madison, WI: Communication Development Center Inc.

Copyright © Autism Asperger’s Digest. 2013. All Rights Reserved. Distribution via print is prohibited without written permission of publisher.

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Jamie Pacton, MA
Autism Asperger’s Digest | May/June 2013

Jamie Pacton is blown away by these Autism moms who rock, and all they have accomplished in such a short time.

Nicole Schumacher

Nicole Schumacher, wife of Paul and mother to Paul Jr. (14), Andrew (11), and Brooke (5), is the founder of love, Andrew—an autism foundation whose tagline—Believe It’s Possible—is the cornerstone of that overall mission” (loveandrew.org). The Schumacher family is usually associated with their custom homebuilding business, but it is now also known for fierce determination and tireless autism advocacy. Although Nicole has a PhD in psychology, it is through her youngest son Andrew, who was diagnosed with PDD-NOS (pervasive developmental disorder–not otherwise specified), that her work with autism really blossomed.

What were Andrew’s early years like?

It was a terrifying time in my life. I couldn’t take him anywhere. He would not respond to his name and would run off, which was a big safety issue. I had the strangest feeling of loss; I would think, “You have a child physically in front of you, so how do you mourn the loss of a child who’s still there?” What I realized was, “I can’t parent him in the typical way, so I’m going to have to do something unconventional!”

What is Andrew like now?

He’s the easiest child I have! Now he’s in fourth grade in a regular classroom, although he leaves the classroom for certain things. And he has friends. Every morning he gets up, takes a shower, makes his own food, and is a part of family life. We still work on many things, but he doesn’t have tantrums anymore, and he’s very affectionate and sweet.

Which programs helped Andrew?

I found the Son-Rise program first (autismtreatmentcenter.org). It really helps parents help their kids. I set up a home program and we worked with him tirelessly. After that, we also started working with Brain Balance, which is a neurological hemispheric program (brainbalancecenters.com). They test the child on factors like eye movement, balance, and other things that might indicate brain function on one side of the brain or the other. We still do Brain Balance exercises daily, and Andrew has shown great improvement.

What are your goals for love, Andrew?

Our autism foundation love, Andrew is intended to help school systems better learn to help and accept children on the spectrum. Through education, training, and exercises like replicating the sensory overstimulation a child with autism faces, we’re trying to reverse the idea that kids with autism are just behavior problems who need to be disciplined for things they cannot help. At Andrew’s current school, they have seen his struggle and know how far he’s come. They treat him like he’s part of their family. That’s the attitude we’re hoping to foster in other schools.

What are some of your long-term family goals?

Of course we want to grow the love, Andrew foundation and continue to help Andrew develop. We also hope to start building homes for families of kids with autism. Many people in the building community are willing to donate household components—like special bathtubs, for example—that can help a family create a home that is less challenging for a child with autism to live in.

Jess Wilson

Jess is the voice behind the popular autism blog Diary of a Mom (adiaryofamom.wordpress.com). She and her husband, Luau, are raising two daughters: 11-year-old Katie, and 9-year-old Brooke, who has PDD-NOS (pervasive developmental disorder–not otherwise specified).

How did the diagnosis change your family’s life?

First, it gave us what I call the keys to the toolbox, offering us invaluable insight on how to help Brooke learn, mitigate some of her toughest challenges, and leverage her incredible talents and skills (and sense of humor!) to become the amazing little human being that she is today. Second, it gave us the keys to the village, an entire community of people who have walked a similar path. This was priceless for those of us who love her, but it’s also invaluable for her. The idea that there is a group of people who have traveled this road ahead of her—who are waiting to welcome her with open arms, who have looked at the world through a lens that is similar to hers. This offers me comfort like nothing else can.

What do you get from writing Diary of a Mom?

In addition to a place for me to process the overwhelming moments, it’s also become a beautiful living, breathing community of people on the spectrum, those who love them, and a few who found it quite by accident and never left. I am so grateful for each and every one of the denizens of the Diary village. As it says on the blog’s About Page, “It is a sense of community that makes the good times sweeter for the sharing and the hard times more bearable for knowing that we’re not alone.”

What are some of your favorite posts?

“Welcome to the Club” is probably my all-time favorite. I really like “Person First” as well. For me, it’s a great illustration of my evolution as my girl’s Mama—from a parent whose understanding of autism came from the outside to one whose insight comes, as much as possible, from the inside. “D Day” is another one. It’s not my best writing by a long shot, but the message is an important one to me. A diagnosis does not change your child. You leave the doctor’s office with the same awesome kid you went in with. The only difference is that now you have those precious keys that I mentioned earlier.

What have you learned along your journey?

To slow down, to open up, to greet everyone with compassion and patience and an open mind. That words are not always necessary to communicate, and sometimes they muddy the message. To treasure varied perspectives, to reserve judgment, to celebrate each and every victory no matter when or how it comes. To reject timelines and so-called norms, to eschew pretense and celebrate all that is gritty and real. To ask for help and to accept it with grace. That everyone—absolutely everyone—has something to contribute and that if we take the time to help dig for it, we will all be richer. That words matter. That the way we talk about autism informs the way that people perceive our children.

What advice do you have for parents of a newly diagnosed child?

Remember that a diagnosis does not change your child. No one word has the power to determine the trajectory of a life. Take time to digest it all, then jump in with open eyes and an open heart. Seek out varied perspectives: listen to parents and doctors and therapists, but above all seek out adults on the spectrum who can offer insight from the inside out. Find the village—for you and your child.

Erin O’Laughlin

Erin and her husband Colm are parents to Jordan, Marcus, and Brendan. Marcus was diagnosed with moderate/severe autism at the age of three, and now he’s eight years old. Erin is already thinking about the time when “the school bus stops coming,” and she worries about what will happen to all the children with autism once they hit their adult years. In addition to creating a nonprofit organization, 3 Irish Jewels Farm, which will provide assisted living for adults with autism in North Carolina, Erin has published a children’s book, The Bluebird Dance, with 100 percent of the sales benefiting the farm.

How does Marcus’s autism affect him?

Marcus defies a lot of the stereotypes of autism. He makes eye contact with me, and he loves cuddles, back rubs, and hugs. I once read something about the comparison of backpacks and autism. Everything has to fit into the backpack and be carried. If it isn’t useful, it isn’t taken. Marcus’s life is like that: his backpack is extremely limited. There’s only so much we are going to be able to pack into it for him, so each item has to count. Must he learn to add 2 + 2 by hand? No, he can use a calculator. Does he have to learn how to define words? No, he needs to know how to communicate.

What are your dreams for 3 Irish Jewels Farm?

3 Irish Jewels Farm will provide assisted farm living and day programs for adults with autism, and summer and day programs for children with autism. Residents, surrounded by peers and caring staff, will have opportunities to work, participate in leisure and recreational activities, and learn skills.
The farm will be built in several phases. Once land is acquired, the adult day programs and horticultural programs, along with the children’s summer and track-out programs, will complete phase 1. Phase 2 will consist of a capital campaign, with plans to build several one-story homes clustered around a communal area. The residential program will be self-sustaining, partially relying on funding from Medicaid, Medicaid HCBS (Home and Community-Based) waivers, Social Security, and local sources.

What role will you play at 3 Irish Jewels Farm?

I will be doing much of what I’m doing now: designing, developing, and implementing strategic plans. I will also be responsible for the day-to-day operation of the organization, including managing and overseeing committees and staff and developing business plans in collaboration with the board of directors.
I’d like to think that Marcus is a farm boy at heart since he loves to be outside—running around, swinging, being at one with nature. He loves animals and is absolutely enthralled with horses. So, my ultimate dream would be to mesh those two dreams together—my dream for Marcus’s future happiness and my dream for 3 Irish Jewels Farm to get off the ground. I envision Colm and I living on 3 Irish Jewels Farm in the main house, Marcus living in one of the individual homes, and providing a place for adults with autism to call their home.

How can parents set up similar farms in their communities?

First, take a look at, become familiar with, and get to know the members of Agricultural Communities for Adults with Autism (ac-aa.org). Learn how to operate a nonprofit organization and how to start one from the ground up. I relied a lot on the book How to Form a Nonprofit Corporation by Anthony Mancuso. Hire an attorney to help with getting your tax-exempt status. Finally, check out Bittersweet Farm’s WISDOM program (home.tbbs.net/semisweet/store/wisdom.html), a wonderful webinar series on starting a nonprofit farm program serving people with autism.

What have you learned from Marcus?

I view my relationship with Marcus as a journey. He has brought me a new outlook, a deeper understanding, a new appreciation of what patience is all about. And, for the most part, the journey has been beautiful.

Patti Moore

Patricia (Patti) Colley Moore is a fearless single mother of two unique boys, Liam (18) and Aidan (11), both of whom have autism spectrum disorder (ASD).
Her husband left her three years ago on Mother’s Day, but in the time since then, Patti’s accepted her new parenting role with grace. An avid music fan and surfer, she encourages her boys to try all sorts of activities like surfing, skateboarding, skiing, and sailing. She travels with them all over the United States, plans to take both of them to Africa this year, and would like to see the world with them in time.

Could you tell us a bit about your boys?

Liam and Aidan are very different, despite both having ASD. We’re a family of individuals who are unique. Aidan is a fiery ball of energy; he’s passionate and mercurial. Liam is my “Buddha boy,” and he tends to go peacefully with the flow of our lives. They both love to draw, write stories, listen to music, and be in the water or snow.

How has your sons’ ASD diagnoses changed your family’s life?

Liam was diagnosed later, at age three and a half, since he was undergoing surgery for a cleft lip and palate. His diagnosis sent me into a deep depression, and I despaired. We had to move from New Orleans (a city I loved, and one where I thought I’d raise my children) to Boston, where there were better ASD services. Aidan got his diagnosis at 18 months, and I was not as surprised because the idea of him having ASD had always been in the back of my mind. For me, having two sons with autism meant that my supreme focus became helping them.

Why did you choose to go into the field of special education?

I think being a parent of children with special needs has given me a toolbox of ideas to try in the classroom. Also, I feel a deep sense of compassion and respect for these children, and I truly believe in never giving up on a child.

What have you learned as a mom to two children with ASD?

First, it’s taught me patience. Everything works out, but it takes time (sometimes lots of time). And it has taught me how different we all are, and I’ve learned to accept those differences with an open mind.

What advice do you have for parents of a newly diagnosed child?

Never, ever give up! Just because something is hard the first time your child does it, does not mean it always will be. These children are amazing—they think so out of the box, and there are no limits to their creativity! My sons have helped me slow down, expand my mind, and appreciate life. This journey is a gift, not a punishment.

After Liam’s first time surfing, one of the surfers said to me: “Autism is like the wave, go against it and you are fighting against something you can’t win, but ride with it, and what a ride it is!”

BIO

Jamie Pacton, MA, is a writer, professor, and mother to two boys (one who is on the spectrum). She is also the author of The Early Years column, featured in each issue of Autism Asperger’s Digest.

Copyright © Autism Asperger’s Digest. 2013. All Rights Reserved. Distribution via print is prohibited without written permission of publisher.

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Autism Around the World: Canada

by Vicki Harvey and Michelle Samagalski
Autism Asperger’s Digest | July/August 2013

Access to programs and services for those with autism spectrum disorder (ASD) and their families in Canada is much like buying a piece of real estate. It’s all about location, location, location. In Canada matters of national concern are managed and funded by the federal government while matters of local concern are handled by the ten provincial and three territorial governments. Health care and education are considered local matters, so each province or territory has legal and financial responsibility to provide these services. As a result, each province/territory has created services and programs that best suit its local population (but this does not allow for a uniform program across the country). In addition, the amount of funding and services vary from province to province, territory to territory. What your family can access at different ages and stages depends on where you live.
In recent years, the federal government has begun to hear from and respond to families and others concerned about the needs of persons with ASD. Several national meetings, a study by the Canadian Senate, and regular advocacy on the part of national and provincial autism organizations have created a consistent public voice in the federal government’s ear. Currently the government has committed to developing a national surveillance system to record proper statistics on individuals with ASD in Canada. The proposed system is targeted to be active in 2015.

Early Intervention

Each province has developed an assessment and diagnosis regimen and strives to diagnose children as early as possible. The territories have different approaches: Yukon provides assessment and diagnosis within the territory while the Northwest Territories and Nunavut send children to other provinces for assessment. Once a diagnosis is achieved, a treatment plan can be developed. Publicly funded services for preschoolers diagnosed with ASD are available in each province, but they differ in type of program and length of time a child may stay in the program. All provinces offer a program based on a behavioral model whether that is ABA (Applied Behavioral Analysis), IBI (Intensive Behavioral Intervention), or PRT (Pivotal Response Therapy). Children will have services for anywhere from 15 to 40 hours a week, for at least a year. The territories again differ, with publicly funded autism preschool services available in the Yukon and the Northwest Territories. Nunavut does not provide funding for specific autism services at this time.

School-Age Services

The transition to school often means a different focus for autism services. In all provinces and territories, the education system takes over the programming and supports for students with ASD when they are five to six years old. Again, there are no national standards for ASD programs or services and each province or territory develops its own approach. The idea of inclusion has been generally embraced in most places in Canada, although it is recognized that inclusion may not look quite the same for everyone.
All provinces and territories develop an individualized plan if that is what is needed for the student. Some students do not require a full adjustment to their program and will do well with adaptations or accommodations to support their learning style. Other school supports may include professional services, specialized teachers, teaching assistants, learning centers, resource rooms, and self-contained classrooms.
There are certainly limits on services everywhere, with wait times for some services. Urban centers have far more resources than rural ones; however, these also have greater demands on available resources, since more individuals are diagnosed in cities than in the rural areas. Only two of the provinces, British Columbia and Alberta, offer annual funding to families with children 6 to 19 years of age for additional programming.
The increase in the number of students with ASD has resulted in school boards across the country increasing their pool of autism specialists. In addition, the provinces (but not the territories) have developed handbooks (available online) to guide educators, administrators, and parents in meeting the needs of students with ASD.

Support for Autism Families

And what about support for families of children with ASD in Canada? There are active autism societies in most provinces and territories. Autism Society Canada, a national federation of Canadian autism organizations, has representatives from all provinces and territories except New Brunswick and Nunavut. All the societies work to help families find good information and resources. They are mostly staffed by parents who share their knowledge and experience to help others as they try to navigate the sometimes complex systems within their communities. Families can be connected to local autism societies through Autism Society Canada’s Autism Junction Service Directory (a national resource).

Into the Future

Canada has moved forward in supporting early identification and interventions for children with ASD. However, focus must shift to the needs of adults in the autism community. Supports, services, and resources diminish as children with ASD transition into adulthood. Improving opportunities for housing, employment, and quality of living is the next frontier faced by families of people with ASD in Canada.

Vicki Harvey is the Community Outreach Coordinator for Autism Nova Scotia. She has a 22-year-old son with an ASD.

Michelle Samagalski manages the affairs of disabled adults for the Public Trustee of Manitoba. She has a background in finance and law. Her 22-year-old daughter has an ASD.

Copyright © Autism Asperger’s Digest. 2013. All Rights Reserved. Distribution via print is prohibited without written permission of publisher.

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Nouns, Angles, and Street Maps: Concrete Foundations Beneath Brilliant Abstraction

by Jennifer Cook O’Toole
Autism Asperger’s Digest | July/August 2013

Noun. A word that strikes passion in your souls and electricity in your mind. What, not really? OK, I fully realize that my love of grammar is not exactly shared with the general population. But to me, as an Aspie, it is a beautiful set of rules and patterns that governs the presentation of the intangible: communication, ideas, feelings. It’s a format which, when mastered, can be toyed with to create subtlety, nuance, and sheer poetry. So as far as I’m concerned, nouns are rather fabulous.
Now, don’t worry. This glimpse into the spectrum isn’t about parts of speech; it’s about the way we, on the spectrum, yearn to learn. Just bear with me through the grammar (and a classic Montessori lesson) for a moment longer.

Concrete Nouns

One afternoon I placed a small basket in front of my daughter, which she promptly fingered, tracing the woven straw, then jingling the tiny scraps of folded paper to see how much force it would take to toss some overboard. “OK, Munchkin,” I smiled. “We’re about to play Fetch. I’d like you to take one slip of paper out of that basket, read it to yourself, and then go and get me whatever is named.” She giggled but followed the plan, retrieving a sock, a train track, a quarter, an egg, a houseplant, and so on until there were no more slips of paper remaining.
“Great!” I praised her. “You’ve just been able to read the nomen of each of those objects and follow my directions.”
Her forehead creased. “I read the what?”
“You read the nomen,” I replied. “That’s the Latin word for name—kind of like in Spanish, someone might ask your nombre, or in French, they’d want to know your nom. Those words come from the word nomen, and so does our English word, noun. That’s because a noun really is just a name. Sock, egg, plant: they’re just common names we’ve given to some of the objects around us.”
She considered this for a moment, and countered, “Except those are just things. People have names.” And I agreed, she did have a name, Maura. But she also had other names: girl, child, person, human, daughter, sister. If two people, one from Japan and one from Argentina, were to look at her, they would both see the same thing—a real, touchable, breathing, three-dimensional person, whom they could describe with spoken sounds (called words). But neither would understand the other’s sound patterns, and they most certainly couldn’t read each other’s writing representing those words, yet all of the abstract sounds and scribbles represented the same, very real person they saw.

Abstract Nouns and Beyond

Then I presented another basket of words. Given the same instructions to read and then fetch, she opened a slip of paper and stopped, bewildered. “I can’t get this,” she drawled slowly.
“Oh no?” I asked. “Hmmm, well, try another one.”
And she did—twice more, only to be befuddled. “Mom,” she sighed, slightly annoyed. “I can’t go get you love. And I can’t go grab joy or friendship.”
“Why?” I asked. “They’re the names of things, too, aren’t they?” Of course they were, she admitted, but you can’t carry love or put joy into a tote bag. No, I agreed, because these things were untouchable, hazily defined, conceptually debatable, culturally malleable, and utterly impossible to pin down. They were—and are—abstract.
Concrete nouns, I explained, represent things that are tangible, observable, touchable. She, herself, was tangible. What nature had wrought, her existence, was inarguable fact. She is “concrete.” However, there are other very real things that make an impact on the world but cannot be seen, tasted, or carried. They are represented by abstract nouns and are much more ambiguous, variable, and “fuzzy.” You can’t see them, but wars, religions, and politics prove that their impact is often more profound than the concrete people and things we name.
Now, what does that lovely grammar lesson have to do with anything? Simple. For those of us on the spectrum, abstract nouns are painfully difficult to define and are often the greatest sources of blunders in friendships, love, employment, and sense of self-worth. To give our Asperkids and spectrum kids a chance at success in the realms of the abstract, we must first introduce even the most intangible concepts via concrete experiences.

Montessori Magic

Maria Montessori believed that “what the hand does, the mind remembers.” Concrete materials make concepts real and, therefore, easily internalized. For any child to develop deep foundational concepts, concrete hands-on learning materials are ideal; like no other method, sensory-based, real beginnings optimize eventual comprehension of abstract concepts. Then, once those ideas are internalized, the “tangibles” (e.g., sandpaper letters, rearrangeable triangle pattern blocks) are no longer necessary. But by first introducing information concretely, we can present new degrees of abstraction and complexity as the child shows himself to be ready.
All developing minds first learn through sensory input: our most primal method of absorption and observation. That’s the best-case educational scenario for any child. But for our children, it’s an absolute necessity throughout life. Knock into a block tower and it will fall. That necessity for sensory learning is also why spectrum kids’ sensory defensiveness can inhibit the creation of necessary learning foundations. If you’re too put-off by the feel of rice, how can you fill up a funnel and watch gravity in action, or figure out how to unclog the traffic jam of grains?
Socrates said, “That which is held in the hand is then held in the heart” (and I would add, in the head). In order for a theoretical physicist to wonder about the impact of gravity on time distortion, does he not first have to see the stars with his own eyes?

Geometry for Asperkids

Most of us remember geometry being taught as an abstract series of rules, theorems, and propositions presented alongside figures 1, 2, and 3 meant to be memorized by students who couldn’t care less about the structural integrity of a hexagon. But geometry—like cooking and chemistry, math and musical scales—is actually rooted in our concrete world. You’d just never know it from the way most of us are asked to learn geometry concepts.
As a “Mensa-smart” (undiagnosed) Asperkid who relied on rote memorization (rather than comprehension) in geometry class, I get this to my core. Allow an Asperkid to pin strings or wooden sticks into parallel lines, cross them at random with transverse lines (i.e., with toothpicks), and then take some angle measurements. Once the child calculates the sums, you will have to explain nothing about transverse lines and supplementary angles. The child will discover patterns for himself and, in doing so, begin to notice other if–then patterns in history, social behaviors, game-playing, and even basic self-care skills.
Many famous people, confirmed or suspected spectrumites, are known for their capacity for unparalleled abstraction, luscious creativity (Emily Dickinson), radically complex theory (Albert Einstein), mechanical tenacity (Henry Ford), and endearingly witty humor (Charles Schultz). It’s just that our black-or-white, show-me-don’t-tell-me minds require the independent observation of patterns, trends, and possibilities from real things, not from someone else’s proclamations.

Getting to the Goal

We on the spectrum live in a world that can feel terrifying in its random cruelty, uncertainty, and inconsistency. That’s why we are, so often, aggravated by changes in structure, routine, and rules. We are not being obstinate for the sake of being obstinate; we are scared. And that is why, it seems to me, that the most difficult—and most important—thing for our loving families, friends, therapists, and teachers to convince us of is that there is “more than one way to get to OK,” whether that’s folding towels, solving a math equation, or packing a school bag.
In our home, I usually preteach academic concepts to my children before school teachers introduce them, ensuring that in-class sensory distractions or social anxiety doesn’t cost my Asperkids an entire instruction. Last week, my six-year-old son eagerly requested a new “Momma math” lesson (inspired by a biography of Albert Einstein!). However, he was resisting the same instruction at school because “the teacher does it differently” (actually, that’s not really so, but my son perceives any difference as major).
Much to his surprise, I began the math lesson by pulling out a local street map. Could he please, I requested, locate our home (he did), and then locate the grocery store (no trouble). Next, I produced three crayons, and asked him (first with his finger) to find three different routes from our house to the store: one he should trace in blue, one in red, and one in green. Again, no trouble.
After he had drawn, I “infused” the lesson into his body, asking him to close his eyes and just feel as I guided his hand along each colored path. Then, he did it again, eyes open, and indeed, each route he had traced led from our driveway to the same grocery store. When asked, my little navigator agreed that yes, even though some ways were longer than others, they were all “right” because they’d all get us where we needed to go.
All of a sudden, Mom broke the silence with a theatrical shriek. “Eek!” I yelled. “There’s a flood on Blue Road! We can’t get through, and we really need toilet paper! What can we do?”
“Mom,” he smiled. “Don’t freak out. Just take Green Road or Red Road.”
“Oh, OK,” I sighed. And then suddenly, I burst out again, “Oh no! Green Road just had a telephone pole fall across it. The road is closed!”
“Mom,” he shook his head. “So what? We can still take Red Road.” With dramatic nervousness on my part (and a whole lot of giggling on his part), I peppered him with the following: would we still get the toilet paper? Would we still make it to our goal?
Yes, he assured me, as long as we had a way to get there, we’d be fine. (“Aha!” moment ahead.)
“So, Sean,” I summarized, “if we understand what we need to get (toilet paper, answer to a question, or whatever), it doesn’t matter how we get to where we’re headed?”
“No!” he patted my hand. “We’ll still get what we need. Actually, we’re lucky. We’d be in trouble if we only knew one way!”
I smiled. “Hmmm…do you think maybe that’s true of other things, too? Like the math lesson at school?” He gave me a quizzical look. “Well, I was just thinking that maybe, kind of like with the toilet paper, the more routes or ways you have to get there, the more likely you are to get what you need.”
And then I got the look every parent knows, the “Oh! I see what you were doing there, Lady!” Yup. Sneaky me. A street map and toilet paper had just led him to reject the black-or-white, my-way-or-the-highway mentality and acknowledge that just maybe knowing another way of arriving at the same destination was not only OK, it was savvy.

We all need to be part of what we study in order to truly understand, whether that’s grammar (yay!), cosmology, art, animal husbandry, weather patterns, or social skills. To give your spectrum kiddo practical, academic, physical, social, and emotional skills, you must demonstrate, explain, and repeat and be sure to provide every notion in a concrete, measurable, observable format. Neurotypicals can also learn that way. We, on the spectrum, need to learn that way, to communicate that way (through writing, art, or construction), to play that way. We can and will sing, leap, laugh, and dream without limits, but before we can venture into the conceptual, before we can consider the abstract and wonder, we must stand squarely upon the concrete—and know.

Jennifer Cook O’Toole graduated with honors from Brown University and has since studied at the Graduate School of Social Work at Columbia University and Graduate School of Education at Queens University. She is the author of three books, including The Asperkid’s Launch Pad: Home Design to Empower Everyday Superheroes (Jessica Kingsley Publishers, 2013).

Copyright © Autism Asperger’s Digest. 2013. All Rights Reserved. Distribution via print is prohibited without written permission of publisher.

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Get Out and Experience Life!

by Temple Grandin, PhD
Autism Asperger’s Digest | July/August 2013

Provide a variety of life experiences for your child as she grows.

I am seeing too many kids and young adults on the spectrum who are not getting out and doing things. They have turned into recluses who do not want to come out of their rooms. I was absolutely not allowed to do this. I had horrible anxiety attacks, but I still had to participate in activities at both school and home.
When I went away to boarding school at age 14, Mr. Patey, the headmaster at Hampshire Country School, had really good instincts on when to back off and let me do my own thing and when to insist on participation. When I became interested in taking care of cleaning stalls in the horse barn, this was encouraged because I was learning work skills. I was even given insulated boots so my feet would not freeze in the winter.
Mr. Patey drew one important line in the sand. He did not let me become a recluse in my room. I had to attend all meals and classes. He also insisted that I be on time. Every Sunday I had to dress appropriately for chapel and was required to attend. When I got really anxious and did not want to attend the campus movie night, he made me the projectionist. I had to participate with the school community.

Good and Bad Accommodations

Accommodations such as a quiet environment for study and extra time on tests are really helpful. But it is important to avoid accommodations that will reinforce a victim mentality. An example of a bad accommodation: allowing a student to do a public speaking assignment over the Internet. When I did my first public speaking in graduate school, I panicked and walked out. After that, I learned to use good audiovisual aids to give me cues and to prevent me from freezing up. When I did my first cattle-handling talks, I brought lots of pictures that illustrated behavioral principles. Creating excellent slides compensated for my early weak public speaking skills.
I often get asked about homeschooling. For some kids, this is a good option, but there must be lots of opportunities for social interaction with other children. I was teased and bullied and had to leave a large, regular high school. For some teenagers, finishing high school online would be the right thing to do. If you choose this option, the teenager must have opportunities to interact with peers and adults through activities, volunteer work, and job experience. Teens must learn work skills and how to cooperate in a work environment.

Trying New Things

For individuals on the spectrum to develop, they need to be “stretched” to try new things. When I was 15, I was afraid to go to my aunt’s ranch. I really didn’t want to go! Mother gave me a choice of going for either a week or all summer. When I got out to the ranch, I loved it and chose to stay all summer. I would have never known how much I loved working on a ranch if I had not given this experience a chance.

Developing Independence

Another problem I am observing is too many kids on the high end of the spectrum who are being overprotected and coddled. They are not learning how to independently perform tasks such as shopping, ordering food in restaurants, and practicing decent hygiene. Parents and teachers can encourage independence by taking kids out into the community. At first, the child should be accompanied by an adult during shopping or going on the bus. After a few trips, the individual can do it by himself.

Weighing Likes and Dislikes

There are individuals with ASD who get good jobs and then quit because they “don’t like it.” I have seen people on the spectrum leave good jobs with sympathetic bosses because they did not want to work. A vital lesson one has to learn is that you sometimes have to do stuff you don’t like. I like my work as an animal science professor, but there are some tasks that are not fun. A good job has more tasks you like than tasks you hate. A person on the spectrum needs to learn that if he has a job where he is treated decently, but does not like the work, he should stick with it long enough to get a good recommendation for the next job.

Encourage your child to try new things, go new places, and develop new skills. Provide a variety of life experiences for your child as he grows. Allow your child to stretch beyond his comfort zone and relish the adventure!

BIO
Temple Grandin is an internationally respected specialist in designing livestock handling systems, and is the most noted high-functioning person with autism in the world today. She is the author of numerous books on autism and is a worldwide speaker on autism topics. Unwritten Rules of Social Relationships, coauthored with Sean Barron and Veronica Zysk, captured a prestigious Silver Award in the 2006 ForeWord magazine Book of the Year competition. Her previous book, Animals in Translation (2005) was on the New York Times Bestseller list. For more information visit www.templegrandin.com

Copyright © Autism Asperger’s Digest. 2013. All Rights Reserved. Distribution via print is prohibited without written permission of publisher.

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Adolescent Issues for Individuals with AS

by Tony Attwood, PhD
Autism Asperger’s Digest | July/August 2013

Adolescence is a difficult time of life for almost all teenagers but especially for those with Asperger’s Syndrome (AS), to be now known as Level 1 autism according to DSM-5, the primary text for the diagnosis of autism spectrum disorders (ASD).

The main issues can be the:

•    physical changes associated with puberty
•    unusual learning style associated with autism spectrum disorder
•    special interests
•    development of friendships and issues regarding sexuality and bullying
•    sensory sensitivities
•    management of emotions
•    moving to employment or college.

It is also a time for self-reflection on the transition to becoming an adult. Lack of social and perhaps also academic success and subsequent stress can lead to the development of secondary psychological disorders. Some adolescents, especially girls, who have the signs of AS may have previously been able to camouflage their social confusion and observe and imitate their peers in relatively simple social situations, but as social interactions between teenage peers become more complex, their ability to socialize successfully becomes more elusive and stressful. Then, for the first time, a diagnosed mood disorder or eating disorder can be confirmed to be AS through a detailed assessment of developmental history.

Puberty

People who have ASD have considerable difficulty coping with new experiences and change—and puberty heralds considerable physical changes. It is important that the teenager who has AS has clear and accurate education about those changes, especially in relation to personal hygiene and changes in body size, proportions, and function. Fortunately, there is now literature available for adolescents with AS and their parents to explain the changes associated with puberty (see Attwood 2008). It is vital that adolescents with ASD receive detailed, unambiguous information about sex and sexuality, as this is seldom included in teenage discussions where their typical peers acquire such information.

Learning Styles

There is a different learning style, or profile, associated with ASD, which can be conceptualized as a different way of perceiving, thinking, and learning. We recognize that adolescents with ASD will have problems with executive function, a term psychologists use to describe the ability to plan how to do an activity, organize what you need, know how long it will take to complete the activity, and not be distracted by other activities. Teenagers with AS often need a parent to act as an executive secretary for school projects and need teachers to be aware that organizational and planning difficulties are not a sign of intellectual disability or a lack of respect for the teacher and the subject. They may have a one-track mind—that is, a lack of flexibility in problem solving—not listening to advice or learning from the experience of others, and not realizing someone else may have a solution to the problem. Programs that encourage flexible thinking and seeking new information may be needed.
Another characteristic is a fear of making a mistake and the belief that as long as you do not try, you cannot make a mistake. An associated fear is appearing to be stupid and being ridiculed by peers for making a mistake. It is important to emphasize that we learn more from our failures than our successes, that attempting difficult problems leads to greater intellectual strength, and that an error provides valuable data that can lead to the correct solution to a problem.
Learning in a classroom requires considerable linguistic and social abilities, which can be very difficult for adolescents with AS. The AS learning profile can include being distracted by parts of things or odd details. If interrupted, the individual needs to learn to take time to reorganize thoughts. Learning can be facilitated by reading a textbook or completing a computer-based program.
There is always the issue of homework and whether the stress and strain on the adolescent and his family to complete homework on time are worth the extreme effort. Handwriting can also become an issue, with a preference for typing in class and for exams. For some adolescents, the degree of stress at high school can lead to discussion on whether homeschooling would be a positive option to prevent a clinical depression and whether the high school curriculum could be pruned to discard subjects of limited long-term value to the teenager with ASD who has difficulty maintaining motivation.

Special Interests

Adolescents with AS can spend considerable time engaged in their special interests. Why are the interests so important for these teenagers? The interest has many positive aspects: for example, it can be energizing (but perhaps not for the parents); provide a wide range of enjoyable experiences greater than those experienced with the interpersonal aspects of adolescent life; give rise to the euphoria of discovering new items or information to add to the collection; and increase the expertise or reputation of the adolescent. The interest can be a “thought blocker” to keep feelings of anxiety or depression at bay; a form of escapism in terms of enjoying an alternative world (as in science fiction), where the teenager with AS is valued and respected (the Mr. Spock syndrome); and a way of making friends who have similar interests.
Experience has shown that teenagers with AS can have talents in mechanical abilities and information technology, science and mathematics, the fine arts (especially visual arts, music, and writing fiction), and working with animals. Thus, adolescence can be a time to develop such abilities in preparation for a successful adult life.
Controlling Access to Special Interests. It is wise to consider controlled access to acceptable interests, to incorporate the interest in the school curriculum and in psychological therapies where it may be used as a metaphor or a means of encouraging motivation by earned access. The interest may also be used to develop specific talents in areas such as drawing, playing an instrument, animation, and computer programming to improve self-esteem and gain positive appreciation from peers. Sometimes the interest can be the basis of a successful career as an expert in a particular area.
Unacceptable Special Interests.There can be interests, such as weapons, fires, and pornography, that give cause for concern for parents, clinicians, and law enforcement agencies. It is important to logically explain why the interest is of concern from the perspective of others, perhaps using Comic Strip Conversations by Carol Gray (Future Horizons, 1994) to explain the thoughts and feelings of others and how continuing with the interest could have a detrimental effect on the quality of life of the adolescent with AS.

Relationships

Friendships. Adolescence is a time of change in the nature of friendships, with typical teenagers considering peer group acceptance as more important than the opinion of parents. There is a greater degree of self-disclosure between friends and a desire to be accepted and respected by peers. Unfortunately, most teenagers with AS feel that they are frequently rejected, humiliated, and ridiculed by their peers. They often experience an intense loneliness and great difficulty integrating with “toxic” teenagers, those perceived as social zealots, intolerant of anyone of their age who is different. Friendships may end at the school gate, with the adolescent’s home being a safe refuge from the vulnerability and exhaustion of spending a day at high school.
Teenagers with AS need social skills programs on friendship, often based on drama activities to learn how to act in everyday situations with peers at high school. Social success can be achieved, but should not be at the price of emotional and intellectual exhaustion, and not being true to the adolescent’s real personality.
Romantic Relationships. The nature of friendship changes during adolescence with the emergence of the new dimension of sexuality and romantic relationships. Teenagers with AS are often delayed by several years in their experiences of romantic relationships. In early adolescence there may be little interest in friendships beyond conversation, and with the new social conventions of dating, anxiety abounds with a fear of rejection. This is another reason to feel different from peers, as the adolescent senses his lack of abilities, experience, and confidence. There can be difficulties understanding the subtle signals of mutual attraction, a tendency to misinterpret acts of kindness as meaning more than was intended, and a vulnerability to developing a crush that is misperceived as stalking. Girls especially are vulnerable to sexual predators. We now have resources and programs to teach the dating and relationship game and to provide strategies to reduce vulnerability to unwanted sexual experiences (see Uhlenkamp 2009 and Brown 2013).
Bullying. Teenagers with ASD are also vulnerable to being bullied and teased by peers, and the consequences can lead to concerns with school refusal or being suspended for retaliation. The teenager may have a limited range of responses to being bullied or teased and lack the ability to explain why he retaliated with such ferocity or why he has a vendetta against certain individuals. There are several strategies that can be used to reduce the vulnerability to being bullied and teased and the consequences, such as more supervised areas at high school, help in finding a safe refuge, and encouragement of the “silent majority” to intervene on behalf of the teenager with AS.

Sensory Sensitivities

The revised diagnostic criteria of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) of the American Psychiatric Association for ASD includes the characteristics of hyper- and hyposensitivity to sensory experiences. It is important that teachers in particular recognize that some sensory experiences can be perceived as aversive by an adolescent with AS. These include someone shouting, including a teacher shouting in class, other students accidentally or unexpectedly touching the adolescent with ASD, specific aromas, such as someone’s perfume, and bright sunlight in the classroom. Teenagers with ASD often need an assessment of the nature and degree of sensory sensitivity, which can help explain the aversion to some school activities or individuals.

Managing Emotions

Anxiety. There is one emotion that teenagers with AS are very good at—worrying. ASD is associated with high levels of anxiety, and the teenager may have discovered a range of strategies to cope with a general level of high anxiety, or anxiety associated with specific situations. There can be a diagnosis of Generalized Anxiety Disorder (GAD), Obsessive Compulsive Disorder (OCD), gelotophobia (fear of being laughed at), and other specific phobias, such as a fear of the sound of a dog barking.
The high levels of anxiety can lead to chronic insomnia, school refusal, and concern by parents and teachers regarding behaviors used by the adolescent to reduce anxiety levels. The individual may become very controlling to avoid anxiety-provoking situations, which may lead to a secondary diagnosis of Oppositional Defiant Disorder (ODD) or Pathological Demand Avoidance (PDA). Routines and rituals are imposed to alleviate anxiety, but they can become more prolonged and elaborate during adolescence.
The special interest can be used as a thought blocker, with consequent anger expressed when the adolescent is thwarted from access to one of the few means that he has of alleviating anxiety. Another strategy is to have an emotional explosion or destructive meltdown to cleanse the emotional system or clear the air, effective for the teenager with ASD but frightening (and possibly expensive) for everyone else. Psychologists have developed a range of Cognitive Behavior Therapy (CBT) programs to treat secondary anxiety disorders, and medication can be a valuable treatment for such adolescents.
Depression. Unfortunately, one in three teenagers with AS is prone to having a clinical depression (severe, persistent depression). This can be due to low self-esteem from being rejected and ridiculed by peers, a painful awareness of being different, loneliness, and mental exhaustion from having to learn both the academic and social curriculums of high school. Such individuals are also prone to depression attacks, intense overreactions to an event—a form of catastrophizing that can lead to intense emotions and sudden, impulsive suicide attempts. We now have strategies to help parents and teachers manage a brief but intense depression attack, and psychological therapies that include CBT as well as developing a positive concept of self and achieving a sense of optimism. Medication can also be a valuable means of reducing a prolonged clinical depression.
Anger. Two out of three teenagers with AS are of concern to others and themselves for inadequate anger management. A deeper analysis of the cause of the anger can reveal frustration at not being able to access strategies to alleviate anxiety. The adolescent may use threats and acts of violence to control experiences. He may show signs of externalized agitated depression (blaming others rather than self) as well as anger in response to being provoked and not being valued or respected by peers. Again, psychological therapies and medication can alleviate feelings of anger.
The Role of Exercise in Managing Emotions. Clinical experience has also indicated that regular physical exercise for teenagers in general, and for those with ASD in particular, can reduce feelings of anxiety, sadness, and anger. However, teenagers with ASD usually prefer to be engaged in solitary, sedentary activities. Aware of their problems with motor coordination and team sports, they are usually reluctant to participate in sports. A personal trainer may be able to design a physical activity program for the adolescent with AS that is based on the individual’s personality and body type. Regular physical activity can improve both mood and cognitive abilities.

Employment and College

Support for Vocational Choices. Teenagers with AS benefit from assessment and planning for further education beyond high school and employment at a younger age than their typical peers. The school can assess vocational abilities; teachers and parents can arrange vocational experiences and create a portfolio of work abilities and achievements. Counselors can suggest which career might suit the adolescent’s profile of abilities and personality and offer an opportunity to rehearse a job interview. Employment agencies are gradually becoming aware of the special needs of teenagers with AS who are seeking employment.
Support in Academia. When starting college or university, the adolescent or young adult with AS will need support with courses that require executive function skills and creating a study plan. Student services will need to know how to support a student with AS, not only for the academic requirements but also for making friends and the new social conventions of being a student as well as for concerns about independent living, such as budgeting. Staff can act as a liaison with tutors and lecturers should any problems emerge. The student may need to be monitored for his adjustment to the new environment and vulnerability to deep emotions.

Adolescence is a difficult time for all teenagers. However, I am amazed at how well adolescents with AS cope with the changes associated with puberty and the teen years. From my extensive clinical experience, I’ve learned that the young adult years can be a time of significant progress socially and academically and in terms of self-esteem and independence.

BIO
Tony Attwood, PhD, is a clinical psychologist in Brisbane, Australia. His books on Asperger’s Syndrome are appreciated by parents, professionals, and people who have AS. Each October he travels to the United States to speak at a series of Future Horizons conferences.

Resources
Attwood, S. 2008. Making Sense of Sex: A Forthright Guide to Puberty, Sex, and Relationships for People with Asperger’s Syndrome. London: Jessica Kingsley Publishers.

Brown, D. 2013. The Aspie Girl’s Guide to Being Safe with Men. London: Jessica Kingsley Publishers.

Scarpa, A., S. Williams, and T. Attwood, eds. Forthcoming. CBT for Children and Adolescents with High-Functioning Autism Spectrum Disorders. New York: Guilford Press.

Uhlenkamp, J. 2009. The Guide to Dating for Teenagers with Asperger Syndrome. Shawnee Mission, Kansas: AAPC.

Copyright © Autism Asperger’s Digest. 2013. All Rights Reserved. Distribution via print is prohibited without written permission of publisher.

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Lessons from a Not-So-Cowardly Lion

Ellen Notbohm

Autism Asperger’s Digest | July/August 2013

“What makes the elephant charge his tusk, in the misty mist and the dusky dusk?” the Cowardly Lion asks through narrowed eyes. “What makes the muskrat guard his musk?”

We all know the answer.

Courage.

As a child, the annual broadcast of The Wizard of Oz was a near-religious event for me, and Lion one of my most beloved movie characters. Though decades passed before I realized it, he shaped how I came to define courage within myself and later in my children.

Long before my sons’ challenges with ADHD and autism compelled me to charge my tusk or guard my musk, I knew myself to be a cautious, unadventurous, worrywart middle-of-the-roader. Taking adventurous chances always seemed to reap nasty rather than lofty consequences. It didn’t make me feel courageous; it made me feel stupid. I sailed past my 30th birthday accepting that I would never be known as a valiant person.

Then I had my kids. I had to learn much, and very quickly, and contrary to the cliché, it was brain science. I learned to predict, to prevent, to educate, to ameliorate, to intervene, to advocate, and I did it all because those two little someones stirred me to love more deeply than I could ever have imagined. One of their teachers urged me to write books about my parenting attitude and experiences. And some of the people who read my books saw me quite differently than I saw myself. A mom at an autism conference raised her hand and said, “Your courage is simply inspiring. But I just don’t have that. How did you find your courage? To do all you’ve had to do for your children?”

Fear, I told her bluntly. My children stirred me not only to love more deeply and to hope more fervently than I ever had, but also to fear more penetratingly. I found my courage through that raw fear. Or perhaps I didn’t find it; perhaps it found me. I can’t say it better than I did in Ten Things Every Child with Autism Wishes You Knew:

I could not bear to imagine Bryce’s fate as an adult if I did not do everything within my power to equip him to live in a world where I would not always be around. I could not rid my head of words like “prison” and “homeless.” His quality of life was at stake, and failure was not an option. These thoughts propelled me out of bed every morning and drove me to take the actions I did.

I recalled a long ago sermon by a clergyperson who described three kinds of courage. The first he called courage that doesn’t know any better. This courage is born of naivety, inexperience, lack of knowledge, a courage that comes from being unaware of the risks and consequences of our actions.

The second kind of courage he called courage that has hit rock bottom. We summon this kind of courage when we have no choice other than surrender and defeat. He told the story of a 19th century man who had invested years writing a book. When he finished the book, he asked his best friend if he would read it and comment. The author entrusted to his friend his one and only copy of the book. The friend left the manuscript on a hall table, where a maid came along and threw it out. The author, upon learning this, sat down and started writing his book all over again.

The third kind of courage he described as courage that has said its prayers. We summon this brand of courage when we acknowledge our fear, we know the risks, and we take action anyway because the consequences of taking no action or lesser action are unacceptable.

Lion embodies courage that has said its prayers. He knew the risks. When the Wizard charges Dorothy’s little party to kill the Wicked Witch, the Lion asks, “What if she kills us first?” When the Witch captures Dorothy, his desire to rescue her overcomes his dread fear and channels it into courage.

And when the time comes for Dorothy to leave Oz, she tells Lion she’ll miss how he “used to holler for help before you found your courage.” Dorothy was very young, so we’ll forgive that she missed the fact that hollering for help is a hallmark of courage. Lion may never have found his courage at all without the support of the brains and hearts of the people around him. They stayed elbow-close to him, believed in him, wouldn’t let him turn back, even needed him to lead at one point. In time he became their equal. In the end, the Scarecrow, Tin Man, Lion and Dorothy became a formidable team and accomplished their goal. That goal is not so different than ours—they were trying to help a child move from a dangerous, threatening environment to a safe, healthy one. Our foes may not be witches or flying monkeys, but the challenges of autism can make the world an exquisitely intolerable psychological and physical environment for our children.

Lion was actually more courageous than he knew. Right from the start, he acknowledged his problem and reached out for help, from strangers yet! Like Lion, I hollered for help all along the way. People with brains and heart answered me. Teachers and therapists and friends, oh my! The mom at the autism conference, who claimed she hadn’t the courage, certainly had the seeds of it in her. When she addressed me, her voice quavered through the first sentence. By the time she got to “How did you find your courage?” her voice was strong. She asked a tough question in front of a hundred people, and the act of doing so was part of her answer.

“I never would have found it if it hadn’t been for you” are the last words Lion says to Dorothy. I may never have found my courage if it hadn’t been for my children. I might have gone on thinking of courage as something defined by acts of daring, death-defying, historic heroism, something I could never hope to achieve. How did you find your courage? I found it by putting my feet on the floor each morning and simply doing what needed to be done. I didn’t think of it as courage, so I didn’t know I’d found it until the day I came across a framed piece of calligraphy in a beach-town gift shop that read “Courage doesn’t always roar. Sometimes courage is the quiet voice at the end of the day saying, ‘I will try again tomorrow’” (Mary Anne Radmacher). I found my courage because I wanted my children to find theirs.

So I would add a fourth brand of courage to that list I heard so long ago. I would call it courage that grows from quiet tenacity. I watched Bryce grow into just such a courageous young man. Despite the sludge of medical, social, sensory and communication difficulties his autism dishes out, he gets up every day determined to try again. He graduated as valedictorian of his class, and I can’t emphasize enough that his achievement came from 90% courage and heart and 10% brains.

I still do not think of myself as a courageous person. However, I had to smile over a sweetly serendipitous email that arrived the very day after I began writing this treatise on courage. “Thank you,” it read, “for being a fearless crusader for quality of life and better understanding of people with learning differences.”

BIO

Ellen Notbohm is the author of one of the autism community’s most beloved books, Ten Things Every Child with Autism Wishes You Knew, and three other award-winning books on autism. Visit her at www.ellennotbohm.com and find her on Facebook at https://www.facebook.com/ellennotbohm. Please contact the author for permission to use in any way, including posting on the Internet.

Copyright © Autism Asperger’s Digest. 2013. All Rights Reserved. Any distribution, print or electronic, prohibited without permission of author.

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Developing Proactive Strategies for Managing Problem Behaviors

By Lori Ernsperger, PhD

Autism Asperger’s Digest July/August 2003

Individuals with autism often exhibit a wide variety of challenging behaviors: physical aggression, self-injury, tantrums, and noncompliance. These behaviors can be stressful to parents, disconcerting to school personnel, and often interfere with an individual’s ability to benefit from other learning situations. Highly effective behavioral programs for individuals with autism emphasize proactive strategies for reducing these problem behaviors and are generally based on the following principles:

• The problem behavior serves a purpose
• The need to teach an alternative or replacement skill that serves the same function
• Examination and modification of antecedents and environmental controls as needed.

A comprehensive behavior intervention plan will include a careful balance between proactive strategies and antecedent controls such as changing schedules, modifying the curriculum, and rearranging the physical environment.

Proactive Programming

Before proactive strategies can be developed at school or at home, it is important to understand why the problem behavior is occurring and what purpose it serves for the individual with autism. A functional assessment can provide these answers.

An effective functional assessment is based on several assumptions. First, the problem behavior serves a function for the individual; it aids him/her in achieving a specific outcome. Second, if an individual is repeating a problem behavior, the consequence of the behavior has been reinforced for that individual in the past. Most of us tend to repeat behaviors that are reinforced. Third, individuals exhibiting problem behaviors often do not know the correct adaptive skills, or they have not been effectively reinforced for displaying appropriate adaptive behaviors.

Whether mandated on a child’s IEP (individualized education plan) or completed as an informal assessment by the family, a functional assessment can be conducted efficiently and easily by following these steps.

Step 1. Define the Target Behavior(s)

First, define an observable and measurable problem behavior. This problem behavior will vary greatly from individual to individual. Be sure to clearly define the target behavior. “Hitting” or “biting” is too general. A better-defined behavior might be “Hitting Sally during the lunch period.”

Step 2. Gather Information

This step focuses on the antecedents (what comes immediately before) and consequences (what comes immediately after) the target behavior. You will want to collect information from a variety of sources, especially from adults who have a significant relationship with the individual. The family or school team may interview teachers, family members, or related service personnel who work with the individual.

Data can be gathered through informal conversations, written questionnaires, or direct observation, and should note the frequency (how often it occurs), duration (how long it occurs), and intensity (strength) of the target behavior, and the physical/social environment (does it always occur at the same time of day? With only certain people? In particular rooms?). Ideally, observations should occur in the natural settings where the target behavior is exhibited.

It is also important to carefully take note of certain physiological factors that may influence problem behaviors. If the individual is hungry, thirsty, or sick and has no functional communication system with which to convey this, the outcome may very well be irritability or an escalation of the problem behavior. The family or school team should immediately address these issues in order to reduce further problem behaviors.

Step 3. Develop a Hypothesis Statement

Once data has been gathered and reviewed, the function of the behavior should be apparent and a hypothesis statement can be written. While this can vary among individuals with autism, listed below are a few common functions of behavior and applicable questions to be addressed by the family or school team:

Escape/Avoidance of Tasks or Requests

• Does the behavior start when a request or demand is made?
• Does the behavior stop when the individual is removed from the activity?

Attention

• Is the individual alone or unattended for long periods?
• Does the individual exhibit the behavior when s/he is alone?
• Does the behavior occur to get a reaction?

Power/Control

• Is the individual given choices in the home or classroom?
• Does the behavior stop after the individual receives a desired object?

Communication

• Does the individual have a functional and reliable communication system?
• Is the individual provided with the necessary equipment/skills to communicate wants and needs?

Stress/Frustration

• Does the individual have adequate skills to release stress in an appropriate manner?
• Does the individual seem calm or relaxed after the problem behavior has stopped?

Self-Stimulation or Sensory Stimulation

• Is the behavior part of the stereotypical pattern of behaviors exhibited by individuals with autism?
• Does the individual repeat the behavior when alone?
• Does the individual appear unaware of his surroundings?
• Does the individual’s behavior suggest a sensory component (i.e., shielding eyes from bright lights, covering ears, removing clothing, holding nose closed or holding breath)?

Each hypothesis statement identifies the target behavior and provides an “informed guess” as to the function of the behavior for the individual. A clear hypothesis statement is written in a positive manner, based on the gathered facts. The following are examples of hypothesis statements:

• When mom is making dinner, Samantha attempts to run out of the house to get immediate attention from mom.
• When Stephen goes to the cafeteria with the fifth grade class, he pushes other kids out of the way and runs down the hallway in order be first in line and avoid waiting with the other students.

Step 4: Develop a Behavior Intervention Plan

The behavioral intervention plan is a written document that includes:

• Definition of the target behavior
• Written hypothesis statement stating the function of the behavior
• List of modifications to the environment and/or schedule
• List of replacement or alternative behaviors that meet the same needs
• Criteria or outcome evaluation

Due to the severe deficits in expressive and receptive language skills for individuals with autism, it is important that the family or school team first provide an effective communication system if one does not presently exist. Problem behaviors will only persist or increase if the individual is unable to communicate his basic wants and needs.

Environmental modifications should also be addressed in the behavior intervention plan. The goal of environmental controls is to provide a stable and predictable environment in order to prevent problem behaviors. Families and school teams should review the following environmental considerations:

• Written and visual schedules are posted
• Comprehensible and concise rules are established
• Clearly defined use of space with limited distractions
• Visual supports are implemented

Many problem behaviors can be minimized with effective environmental modifications.

Teaching Replacement Skills

Effective behavior intervention plans include a list of replacement behaviors that will be systematically taught to the individual. The replacement behavior must be as effective and powerful as the maladaptive behavior, meet the same need, be implemented across settings and result in an efficient and meaningful alternative for the individual.

Families or school teams can use a variety of instructional methods for teaching replacement behaviors to individuals with autism. They may select a direct instruction approach such as discrete trial instruction, which includes a set of adult-directed instructions and consequences. Or, they may utilize other strategies, including shaping and token economies.

Shaping is a proactive strategy that builds on current individual skills and reinforces successive approximations to the desired alternative or replacement behavior. Shaping reinforces behaviors that come progressively closer to the adaptive skill.

Guidelines for Implementing Shaping Procedures

• List all necessary steps to take the individual from his/her present level of functioning to the desired alternative behavior.
• High quality reinforcement must be provided each time the individual exhibits an approximation of the alternative behavior.
• Reinforcement may occur at different rates based upon the individual’s ability and learning speed.
• At first it may be necessary to heavily reinforce all approximations to the alternative behavior.

Shaping procedures provide built-in opportunities for immediate reinforcement as the individual is learning the new skill. Although shaping can be a time-consuming method, it provides a practical approach to teaching replacement behaviors.

A token economy system can be an effective procedure for managing problem behavior and is a useful and practical strategy for reinforcing and teaching alternative behaviors. Token economies are flexible and easy to use in home and school settings.

Guidelines for Implementing a Token Economy System

• Select a tangible token that is durable and easy to manipulate. Stickers, coins, points, and buttons are appropriate tokens. Create a sturdy, appropriate token board. Velcro is useful in adhering tokens to the board.
• Determine the criteria and rules for successful task completion and make sure that the individual understands what is required of him/her. Model appropriate behaviors if needed for comprehension.
• Select high quality reinforcements that will be exchanged for the token.
• Establish the ratio of exchange for the tokens and the reinforcement. Initially, reinforcement should be provided immediately after the first token. Gradually increase the ratio of tokens to reinforcement as the individual is more successful in exhibiting the alternative or replacement behavior.

Token economies provide an easy to use system for reinforcing alternative behaviors. The token serves as visual evidence to the individual that s/he has achieved the desired behavior.

Step 5. Choosing Reinforcement Strategies

Regardless of which instructional technique is used to teach replacement behaviors, the family and school team must carefully select high-quality reinforcers that are meaningful to the individual. This is a key element in managing problem behaviors. Most typically developing individuals are reinforced internally, through task completion and verbal praise, but this is generally not the case with individuals with autism. They require external motivation to maximize their learning and increase appropriate behaviors. Families and school personnel must identify appropriate reinforcers and use them consistently and effectively throughout the school day.

Guidelines for Selecting Reinforcers

Selecting reinforcers for individuals with autism is a continuous process, which changes throughout the school year. Not all individuals are motivated by the same items and over time, even favorite reinforcers can lose their appeal. Selecting appropriate high-quality reinforcement involves observing the individual in the home or classroom, completing a reinforcement survey, and/or interviewing the individual or other family members. The reinforcement interests of some individuals may be readily apparent while other individuals require serious investigation. Think creatively and don’t be afraid to experiment.

According to Leaf and McEachin (A Work in Progress, 1999), there are a few basic tenets for using reinforcement:

• Reinforcers are contingent upon the individual’s behavior. The individual is only reinforced after meeting the criteria for the task or exhibiting a replacement behavior.
• Use a variety of reinforcers, rotated frequently, to avoid satiation. If the same reinforcement is used every day, it will lose its potential to change behaviors.
• Use age-appropriate reinforcers based on the chronological age of the individual, not on the developmental age.
• Remember that the goal is to assist the individual to be more functional and independent. Choose reinforcers accordingly.
• Don’t allow free access to strong reinforcers; they should only be available within the context of the particular behavior management program.
• Pair high-quality reinforcers with praise to further develop more natural reinforcement. The ultimate goal is to naturally reinforce through social interaction with the adult.

When first teaching a new skill or desired behavior, reinforcement will be immediate and continuous, to insure repetition of the desired behavior. As the individual progresses with a newly acquired skill or behavior, the reinforcement schedule will be thinned and become more intermittent and varied. Finally, delayed reinforcement is used in a token economy system whereby the tokens are earned and exchanged for a desired reinforcement at a later time. To continually increase the desired behavior, delayed reinforcement should be systematically scheduled. Inconsistencies with delayed reinforcement may result in individual frustration and can trigger problem behaviors. The goal of reinforcement is to help the individual become naturally self-motivating. Ultimately, the individual will be reinforced through the completion of the task and naturally occurring consequences.

Step 6. Evaluate the Intervention Plan

The final step in a proactive behavior management program is to collect data to determine if the target behavior has actually decreased and the alternative behavior increased. Both families and school personnel can easily evaluate the outcomes of a particular plan by collecting frequency, duration and/or intensity data. If the target behavior has decreased, the team can assume the plan has been successfully implemented. However, if the target behavior has increased, the family or school team must re-evaluate the plan. Keep in mind that problem behaviors will often get worse before significant changes are observed.

Developing proactive strategies for managing problem behaviors is a long-term process and requires patience and commitment. Families and school teams must remember to take it one step at a time and celebrate the small successes along the way.

BIO

Lori Ernsperger, a recognized expert in the field of autism and behavioral disorders, received her doctorate in special education from IndianaUniversity, and has over 17 years’ experience in the public schools as a classroom teacher, administrator, and behavioral consultant. Her book, Keys to Success for Teaching Students with Autism (Future Horizons) is a practical, step-by-step resource that unlocks the secrets of six critical elements in teaching students with autism.

Copyright © Autism Asperger’s Digest. 2003. All Rights Reserved. Distribution via print is prohibited without written permission of publisher.

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Please Don’t Make Me Write!

By Kathy Oehler, MS, CCC-SLP

Autism Asperger’s Digest  January/February 2013

Most students with autism spectrum disorder (ASD) hate to write. Even a simple writing assignment can trigger a major meltdown. So, what can a parent or teacher do to help?

Why Is Writing So Difficult?

The process of writing requires much more than the ability to form pretty letters. The writing process involves skills in language, organization, motor control and planning, and sensory processing: four areas that are problematic for many individuals with ASD. It is essential that parents and teachers consider how each of these areas may be affecting a student’s aversion to the writing process.

Language difficulties can influence a student’s ability to come up with ideas to write about. Organizational challenges affect the student’s ability to sequence words into sentences that make sense, and then sequence those sentences into a logical order for a paragraph. Motor control and planning difficulties affect the student’s ability to orient and stabilize his body while he tries to coordinate his fine-motor muscles to hold a pencil or maneuver around on a keyboard. And throughout the entire writing process, the student must use sensory regulation to filter out the bombardment of sights, sounds, smells, and movements that surround him. The wise parent or teacher will consider each of these potential problem areas when helping students with ASD find success with writing tasks.

Why Is Writing So Important?

First, regardless of a student’s cognitive level, the ability to write can affect his ability to graduate with a diploma. Writing is a high-stakes skill. Forty-six states now require proficiency in the Common Core Standards (English Language Arts, Literacy in History/Social Studies, Science, Technical Subjects, and Mathematics) in order for students to graduate from high school. Each of these areas includes a writing component. In order to achieve these standards, a student must be able to write. If students can’t (or won’t) write, they are in danger of failing to achieve standards required to graduate with a diploma.

Second, writing demands can have a major impact on student behavior. When asked to write, students with ASD often express extreme frustration because it’s too hard to put their ideas on paper. In my experience, the most frequent trigger of behavior outbursts in the schools is a “request to do work.” What does this phrase usually mean? Write something! When asked to write, challenges in the areas described above often lead to refusal, negative behavior, or even a meltdown. To meet the educational and behavioral needs of students with ASD, it is essential that teachers implement evidence-based strategies uniquely designed to meet the writing needs of these students.

What Does Research Tell Us?

Until recently, medical science believed that ASD affected only those areas of the brain that controlled social interactions, communication, and problem solving. However, with the advent of brain-imaging tools, new information has emerged. For example, recent brain research has shown that there are significant differences in the way the entire brain functions in individuals with ASD. The most important difference appears to be in the way the various areas of the brain communicate with each other. In the brain of a person with ASD, messages don’t get sent from one section of the brain to another with the same frequency and efficiency as they do in the neurotypical brain (Mostofsky et al. 2009). The “parts” often work well, but they don’t “talk” with each other!

This poor communication between key areas of the brain has a dramatic impact on a student’s ability to write. The writing process requires a high level of coordination between the various parts of the brain. In order to write, a person must activate the areas of the brain that govern motor control and planning, language skills, sensory feedback, problem solving, imitation skills, memory, organization, and proprioception, the awareness of the position of one’s own body in space and the body’s parts in relation to each other. For this to happen, thousands of neural signals are sent back and forth throughout the brain. The brain of a person with ASD appears to send far fewer of these coordinating neural messages (Just et al. 2004). The result may be compared to a group of people crowded into a room, all working intently on the same project but never letting anyone know what they are doing—inefficient and frustrating, much like the writing process for a person with ASD.

How Can a Teacher Help?

Be a detective. When a student refuses to write, look for the reason. Examine the writing task through the lens of a student with ASD. Consider all four areas of potential difficulty: language, organization, motor control and planning, and sensory regulation. Set the student up for success by implementing strategies to support each of these challenges. The following scenarios are examples of how a teacher or parent can support writing challenges and help individuals with ASD become successful writers.

Concern #1: Language. “He has great ideas. However, when it’s time to write, he can’t think of anything to say!”

Most people with ASD struggle with abstract language. They have difficulty with instructions such as “Take out your journal and write about anything you are interested in.” Or “Write about your favorite season.” In order to understand what you want them to write about, students need concrete examples and explicit instructions.

Narrow the choices and use pictures. For example, if the student is to write about his favorite season, show him four simple pictures of the seasons. Ask, “Which one do you like best?” When he indicates his favorite, have him write that choice as his title. Then ask, “Why do you like summer best?” As the student talks, the adult writes a list of keywords—one for each of the student’s ideas. The student then writes one sentence for each keyword.

Concern #2: Organization. “His writing is so disorganized. His paragraphs look like a laundry list of facts with no sense of order or sequence.”

Students with ASD have difficulty organizing and sequencing thoughts, especially in print format. They may be able to visualize a well-developed idea, but getting that idea on paper is similar to translating it into a different language. At the sentence level, words are often out of order. At the paragraph level, thoughts often don’t logically follow each other. In longer writing tasks, time and sequence are often distorted.

Create a visual-support timeline facilitated by the adult. Draw a long horizontal line on a sheet of paper. Ask the student what he knows about the topic. As the student talks, the adult draws simple pictures (or writes keywords), representing the student’s ideas along the straight line. The adult discreetly arranges the pictures in a logical order during this brainstorming process. At the end of the exercise, the student “reads” the assignment to the adult, using the pictures (or keywords) as prompts. This verbal rehearsal helps the student hear the logical flow of the language. The student then completes the writing assignment using the timeline as a visual support.

Concern #3: Motor Control and Planning. “He can’t get started. When I ask him to write, he just sits there.”

Think about inertia, which is defined as resistance or disinclination to motion, action, or change. Inertia appears to be a function of the neurological processes (Reed and McCarthy 2012) that control a person’s ability to shift attention and plan voluntary motor movements (Minshew et al. 1997). According to Larson and colleagues (2008), when a person has difficulty with shifting attention and motor planning, the result is often a tendency to stay still (i.e., remain in a state of inertia). Inertia describes the difficulty many individuals with ASD have with getting started on writing assignments.

For younger students, provide hand-over-hand support for the first written word of the assignment. With each letter of the word, keep your hand in place, but slowly fade the pressure of your hand on the student’s hand. When you feel that the student has begun to write, slowly fade the presence of your hand. Often this minimal physical prompt will be enough to break the cycle of inertia and allow the student to proceed with the assignment on his own.

For older students, break the cycle of inertia by lightly tapping the paper at the spot where the student is to start writing. Often this silent, noninvasive cue will be enough to help the student initiate movement. The tendency to revert to a state of inertia is strong with students on the spectrum, so the adult will need to be prepared to repeat the silent cue whenever the student appears to be stuck.

Concern #4: Sensory Regulation. “Every time he’s asked to write something, he has a meltdown!”

The vestibular system controls many of the skills required for writing: equilibrium, balance, the ability to hold the head and neck upright against gravity, bilateral control between the two sides of the body, and eye/hand coordination. When individuals with ASD are required to regulate these sensorimotor challenges, manage the language and organization challenges needed for writing tasks, and at the same time filter out the bombardment of sights, sounds, smells, and movements that surround him, the result is often refusal or meltdown.

Provide a movement break before starting a writing assignment. Have the student do 30 wall push-ups before sitting down to write. Or, before starting a homework assignment, ask the individual to carry a full laundry basket up and down the stairs a few times. Intersperse fun movement breaks into the writing task (e.g., write five sentences, do five minutes of brisk game activity with a Wii, followed by five more sentences). Not only do these movement breaks provide positive reinforcement for work completion, they also stimulate the vestibular system and help regulate sensory integration needed for writing.

Writing is hard work for students with ASD. Even simple writing tasks require skills in language, organization, motor control and planning, and sensory regulation. Difficulty in these four areas can lead to refusal or meltdown when the student is asked to write. Consider which of the four areas might be affecting your student’s ability to write, and intervene with this in mind. With appropriate supports at home and at school, students with ASD can become happy, successful writers!

Kathy Oehler, along with Cheryl Boucher, is coauthor of I Hate to Write! Tips for Helping Children with Autism Spectrum and Related Disorders Become Successful Writers (AAPC, 2013). Learn more at www.ihatetowrite.com.

References

Just, M. A., V. L. Cherkassky, T. A. Kellar, and N. J. Minshew. “Cortical Activation and Synchronization during Sentence Comprehension in High-functioning Autism: Evidence of Under-connectivity.” Brain, A Journal of Neurology 127 (Pt 8; June 23, 2004): 1811–21. http://www.ncbi.nlm.nih.gov/pubmed/15215213

Larson, J., A. Bastian, O. Donchin, R. Shadmehr, and S. Mostofsky. “Acquisition of Internal Models of Motor Tasks in Children with Autism.” Brain: A Journal of Neurology 131 no. 11 (2008): 2894–2903. doi:10.1093/brain/awn226

Minshew, N., G. Goldstein, and D. Siegel. “Neuropsychological Functioning in Autism: Profile of a Complex Information Processing Disorder.” Journal of the International Neuropsychological Society 3 no. 4 (July 1997): 303–316.

Mostofsky, S., S. Powell, D. Simmonds, M. Goldberg, B. Caffo, and J. Pekar. “Decreased Connectivity and Cerebellar Activity in Autism during Motor Task Performance.” Brain, A Journal of Neurology 132 no. 9 (2009): 2413–2425. doi:10.1093/brain/awp088

Reed, P., and J. McCarthy. “Cross Modal Attention Switching Is Impaired in Autism Spectrum Disorders.” Journal of Autism and Developmental Disorders 42 no. 6 (June 2012): 947–53.

Copyright © Autism Asperger’s Digest. 2013. All Rights Reserved. Distribution via print is prohibited without written permission of publisher.

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What School Is Best for My Child with ASD?

By Temple Grandin, PhD

Autism Asperger’s Digest May/June 2012

I get asked all the time by parents about which school is the best for their child with autism spectrum disorder (ASD). I have observed that success in school depends so much on the particular school and the people who are involved. Public or private is not an issue. It depends on the particular staff who work with your child. It is really important for PreK and elementary school children to get lots of contact with neurotypical children to learn appropriate social behavior.

There are many children with autism or other labels who do really well in their local public school system and are mainstreamed in a regular classroom. Children who have been successfully mainstreamed range from fully verbal advanced placement (AP) students to students who are nonverbal and/or are more severely involved. Unfortunately, there are other schools that are doing poorly due to a variety of factors.

Some parents choose to homeschool their child. There are lots of good homeschooling materials on the Internet, such as KhanAcademy (www.khanacademy.org), which offers a multitude of free classroom materials for math and science. Others look for a special school for their spectrum kid.

Special Schools for ASD

Recently I toured specialized schools for both elementary and high school students who are on the spectrum. Within the last few years, many new specialized schools have opened. They tend to fall into two types. One is designed for fully verbal children who have autism, Asperger’s, attention deficit hyperactivity disorder (ADHD), dyslexia, or some other learning problem. The kids are enrolled in their new school to get away from being bullied or to keep from becoming lost in the crowd in a huge school. The other type of special school is designed to fit the needs of students who are nonverbal and/or have challenging behaviors.

I have visited four day schools that enroll children with autism or other labels who just do not fit in at a regular school. Teasing and bullying were often a major reason for leaving the former school. Problems with aggression in many students on the spectrum disappeared when the teasing stopped. None of these schools accepted kids who had been in serious trouble with the law. Most of the students I met at these schools were fully verbal and did not have serious problems, such as self-injurious behavior. They were kids who were a lot like me when I was their age. The student population ranged from 30 to 150. Keeping the schools small is one of the keys to the success of these special ASD schools.

Effective Classrooms for ASD

I observed two types of classrooms at these specialized schools. The first type was just like my old 1950s–style elementary school. There were about 12 children in each class, and they all sat at desks while the teacher taught in the front of the classroom. Keeping classes small was essential. The school enrolled about 100 students, ranging from kindergarten through high school. These students were mainly the socially awkward geeky kids who got picked on by bullies. I talked to them at an assembly where all the students sat on the floor of the gym, and their behavior was wonderful!

The other type of classroom I observed had a teacher-to-student ratio of 1:3 or 1:4. Students from several different grades were in the same classroom, and students were taught in subject areas such as math, science, or English. Each student worked at his own pace as the teacher rotated among the students. In all the classrooms a quiet environment was maintained because many students have difficulty with sensory issues. I was glad to see that in most of the classrooms hands-on activities were used.

Every child is different. What works for one may not work for another. There is also a lot of variation in schools, from city to city, and region to region. You know your child best. Take into account your child’s strengths and challenges when deciding the right school for him to find the best possible match. Most importantly, make sure the staff at the school have the proper training and background and use instructional methods that are a good fit for your child’s needs.

BIO

Temple Grandin is an internationally respected specialist in designing livestock handling systems, and is the most noted high-functioning person with autism in the world today. She is the author of numerous books on autism and is a worldwide speaker on autism topics. Unwritten Rules of Social Relationships, coauthored with Sean Barron and Veronica Zysk, captured a prestigious Silver Award in the 2006 ForeWord magazine Book of the Year competition. Her previous book, Animals in Translation (2005) was on the New York Times Bestseller list. For more information visit www.templegrandin.com

Copyright © Autism Asperger’s Digest. 2012. All Rights Reserved. Distribution via print is prohibited without written permission of publisher.

The post Which School Is Best for My Child with ASD? appeared first on Autism Asperger's Digest.

A Social Teenager Trapped Inside

Temple Grandin, PhD

Autism Asperger’s Digest  September/October 2012

Some individuals with autism who appear to be low-functioning have a good mind trapped inside a dysfunctional body that they cannot control. Carly Fleischmann appeared to have no skills at all when she was a child. She had no speech, and she was either in constant motion, destroying things, or sitting alone rocking. The only thing she seemed to care about was potato chips. When she was given a device that had pictures that spoke words when pressed, she quickly learned how to use it. But she found it difficult to press the button for a really needed bathroom break when the button for potato chips was so enticing.

Teachers sometimes underestimate a child’s abilities. One teacher was going to delete the keyboard function on Carly’s communication device. If this had happened, Carly’s parents would have never learned that she knew words. One day Carly typed, “Help teeth hurt.” After this happened a program was started to teach her more words. Every object in the house was labeled. It turned out that Carly was taking in lots of information even though she appeared to not be paying attention.

As Carly slowly became literate, she explained how typing required great effort. She was extremely anxious, and often she would type only with people she knew. Today Carly is typing independently, and she attends a gifted program at her local public high school. She explains how it was so difficult to control her body and sit still. Unlike me, Carly was interested in boys, movie stars, and all the things that a typical teenage girl would be infatuated with. When she was on national TV, she knew she would have to remain still and have no outbursts. She said it would be easier if the cameraman was really cute. To Carly, autism does not define who she is. She wishes her brain and body could be fixed so that normal activities would be easier.

Sensory Bombardment

Carly thinks in pictures that rush at her all at once. I can control the images that come into my mind, but Carly cannot. Filtering out background stimulation is difficult for Carly, and she often has a hard time understanding what other people are saying.

Carly eloquently describes how sensory stimuli would intrude and make listening to a conversation difficult. Carly reports that she often heard only one or two words in each sentence. She describes how cascades of many different stimuli blocked out the conversation. For example, when she was in a quiet coffee shop talking to another person, the relatively low background noise and visual stimuli of the coffee shop could be filtered out. She calls this “audio filtering,” which is often very difficult. Her ability to audio filter became overloaded when a person passed by her table with strong perfume. Now the previously blocked out sounds of the coffee maker and the sight of a door opening and closing all rush in and block out the conversation.

Carly is able to audio filter when the background stimulation is low, but when her audio filtering is overloaded, stimuli from all her senses cascade into her brain and turn everything to chaos. At this point controlling a meltdown is almost impossible.

To help control meltdowns and body movements, Carly does have to take medication. To control herself requires both intense willpower and medication. When she was young, potato chips were the motivation. Today, being able to participate in typical girl interests is the motivator to control her body.

What Is Autism?

Carly’s story makes one think, what is autism? In my case autism is part of who I am, and I do not have the social interests that Carly has. I have no desire to change my brain or be cured. At the so-called high end of the spectrum, autism may be a disorder of the social circuits in the brain. At the other end of the spectrum, it may be a “locked in” disorder where a social person is trapped inside a dysfunctional body and sensory system.

I need to warn the reader to be realistic. Not every child on the more severe end of the spectrum can be Carly, but teachers and parents who are observant can see glimpses of true intelligence in individuals who are unable to “speak.”

Resource

Fleischmann, A., and C. Fleischmann. 2012. Carly’s Voice. New York: Touchstone.

BIO

Temple Grandin is an internationally respected specialist in designing livestock handling systems, and is the most noted high-functioning person with autism in the world today. She is the author of numerous books on autism and is a worldwide speaker on autism topics. Unwritten Rules of Social Relationships, coauthored with Sean Barron and Veronica Zysk, captured a prestigious Silver Award in the 2006 ForeWord magazine Book of the Year competition. Her previous book, Animals in Translation (2005) was on the New York Times Bestseller list. For more information visit www.templegrandin.com

Copyright © Autism Asperger’s Digest. 2012. All Rights Reserved. Distribution via print is prohibited without written permission of publisher.

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Opening the Door on Emotions
Temple Grandin, PhD

Autism Asperger’s Digest March/April 2013

Transcranial Magnetic Stimulation

I had heard through the research grapevine that John Elder Robison, the well-known author of look me in the eye (Broadway, 2008) and be different (Broadway, 2012) with Asperger’s Syndrome (AS), had undergone Transcranial Magnetic Stimulation (TMS) of the area of the brain that contains mirror neurons. TMS employs weak electric currents to stimulate activity in the brain. Mirror neurons are a brain system that enables people to feel the emotions of others.

How Did TMS Change John?

Immediately, I went to Google and typed in the keywords John Robison TMS and watched videos of John describing his experiences. I stayed up all night watching because I couldn’t stop.

The next day I had a four-hour layover at an airport so I called John. I had to learn more. He told me he had been in a number of experiments and that this procedure permanently improved his ability to analyze music. Sometimes when TMS worked, it allowed him to relate to others better. Other times it did not alter his emotions.

John experienced some life-changing effects. For a short period after TMS, John could feel the emotions of others. He talked about opening a window in his mind and that things he thought were not real (e.g., emotions) were real. Even though the effect wore off, the knowledge never left him and he started to relate better to other people. He compared it to a person who has been color blind suddenly getting color vision and only then knowing what certain colors really are. Experiencing this for even a short time permanently opens a door to new knowledge.

John also reports that other people have seen great improvements in him, but the procedure had turned his life upside down. John is glad to know how people feel. I was relieved that John still has an interest in cars after TMS and that he had just posted a recent blog on how to read car diagnostic instruments.

Many people have told me that I have greatly improved socially over a 10-year period. Maybe TMS did for John in one day what took me years to learn!

Other Possible Benefits of TMS

TMS experiments are in the early stages. Both John and I agree that there are many people that TMS could help. It could open up many doors for a person on the spectrum who is being bullied or not able to get or keep a job. Researchers have stated that TMS could jump-start social learning. A study of Endicott and colleagues (2011) showed positive social results using TMS.

John and I also discussed deep concerns related to TMS. If a highly intelligent nerdy child has the treatment, would he still be successful? Would Mozart, Einstein, or Steve Jobs have accomplished their great achievements if their social-emotional door had been opened? My whole life has been my work in the cattle industry, and if I had had this treatment, I may have never achieved the improvements I brought about. A forceful single-mindedness of purpose motivated me.

There are some medical risks with TMS, especially if a person has a tendency to have seizures. Oberman and colleagues (2011) reviewed the literature on the safety of TMS. The stimulation is powerful. When it was applied, it turned off John’s mind like a Zen state, and when it stimulated his motor cortex, his jaw clenched.

What Would Temple Grandin Do?

I asked myself the million-dollar question. Would I do TMS right now? My answer is no! I will let scientists look at my brain, but they are not allowed to try to change it. For now, that door will remain closed. Maybe when I am really old and no longer able work, I would do TMS. It might make the senior center in my hometown pleasurable. For now, reading about and watching videos on TMS will help me learn more from others’ experiences.

References

Endicott, P. G., H. A. Kennedy, A. Zangen, and P. B. Fitzgerald. 2011. “Deep Repetitive Transcranial Magnetic Stimulation Associated with Improved Social Functioning in a Young Woman with an Autism Spectrum Disorder.” The Journal of ECT [Electroconvulsive Therapy and Related Treatments] 27 (1): 41–3. http://www.ncbi.nlm.nih.gov/pubmed/20966773.

Oberman, L., D. Edwards, M. Edsel, and A. Pascual-Leone. 2011. “Safety of Theta Burst Transcranial Magnetic Stimulation: A Systematic Review of the Literature.” Journal of Clinical and Neurophysiology 28, 67–74. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3260517/.

Resource

Berenson-AllenCenter for Noninvasive Brain Stimulation, http://www.tmslab.org/.

BIO

Temple Grandin is an internationally respected specialist in designing livestock handling systems, and is the most noted high-functioning person with autism in the world today. She is the author of numerous books on autism and is a worldwide speaker on autism topics. Unwritten Rules of Social Relationships, coauthored with Sean Barron and Veronica Zysk, captured a prestigious Silver Award in the 2006 ForeWord magazine Book of the Year competition. Her previous book, Animals in Translation (2005) was on the New York Times Bestseller list. For more information visit www.templegrandin.com

Copyright © Autism Asperger’s Digest. 2013. All Rights Reserved. Distribution via print is prohibited without written permission of publisher.

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Nouns, Angles, and Street Maps: Concrete Foundations Beneath Brilliant Abstraction

by Jennifer Cook O’Toole
Autism Asperger’s Digest | July/August 2013

Noun. A word that strikes passion in your souls and electricity in your mind. What, not really? OK, I fully realize that my love of grammar is not exactly shared with the general population. But to me, as an Aspie, it is a beautiful set of rules and patterns that governs the presentation of the intangible: communication, ideas, feelings. It’s a format which, when mastered, can be toyed with to create subtlety, nuance, and sheer poetry. So as far as I’m concerned, nouns are rather fabulous.
Now, don’t worry. This glimpse into the spectrum isn’t about parts of speech; it’s about the way we, on the spectrum, yearn to learn. Just bear with me through the grammar (and a classic Montessori lesson) for a moment longer.

Concrete Nouns

One afternoon I placed a small basket in front of my daughter, which she promptly fingered, tracing the woven straw, then jingling the tiny scraps of folded paper to see how much force it would take to toss some overboard. “OK, Munchkin,” I smiled. “We’re about to play Fetch. I’d like you to take one slip of paper out of that basket, read it to yourself, and then go and get me whatever is named.” She giggled but followed the plan, retrieving a sock, a train track, a quarter, an egg, a houseplant, and so on until there were no more slips of paper remaining.
“Great!” I praised her. “You’ve just been able to read the nomen of each of those objects and follow my directions.”
Her forehead creased. “I read the what?”
“You read the nomen,” I replied. “That’s the Latin word for name—kind of like in Spanish, someone might ask your nombre, or in French, they’d want to know your nom. Those words come from the word nomen, and so does our English word, noun. That’s because a noun really is just a name. Sock, egg, plant: they’re just common names we’ve given to some of the objects around us.”
She considered this for a moment, and countered, “Except those are just things. People have names.” And I agreed, she did have a name, Maura. But she also had other names: girl, child, person, human, daughter, sister. If two people, one from Japan and one from Argentina, were to look at her, they would both see the same thing—a real, touchable, breathing, three-dimensional person, whom they could describe with spoken sounds (called words). But neither would understand the other’s sound patterns, and they most certainly couldn’t read each other’s writing representing those words, yet all of the abstract sounds and scribbles represented the same, very real person they saw.

Abstract Nouns and Beyond

Then I presented another basket of words. Given the same instructions to read and then fetch, she opened a slip of paper and stopped, bewildered. “I can’t get this,” she drawled slowly.
“Oh no?” I asked. “Hmmm, well, try another one.”
And she did—twice more, only to be befuddled. “Mom,” she sighed, slightly annoyed. “I can’t go get you love. And I can’t go grab joy or friendship.”
“Why?” I asked. “They’re the names of things, too, aren’t they?” Of course they were, she admitted, but you can’t carry love or put joy into a tote bag. No, I agreed, because these things were untouchable, hazily defined, conceptually debatable, culturally malleable, and utterly impossible to pin down. They were—and are—abstract.
Concrete nouns, I explained, represent things that are tangible, observable, touchable. She, herself, was tangible. What nature had wrought, her existence, was inarguable fact. She is “concrete.” However, there are other very real things that make an impact on the world but cannot be seen, tasted, or carried. They are represented by abstract nouns and are much more ambiguous, variable, and “fuzzy.” You can’t see them, but wars, religions, and politics prove that their impact is often more profound than the concrete people and things we name.
Now, what does that lovely grammar lesson have to do with anything? Simple. For those of us on the spectrum, abstract nouns are painfully difficult to define and are often the greatest sources of blunders in friendships, love, employment, and sense of self-worth. To give our Asperkids and spectrum kids a chance at success in the realms of the abstract, we must first introduce even the most intangible concepts via concrete experiences.

Montessori Magic

Maria Montessori believed that “what the hand does, the mind remembers.” Concrete materials make concepts real and, therefore, easily internalized. For any child to develop deep foundational concepts, concrete hands-on learning materials are ideal; like no other method, sensory-based, real beginnings optimize eventual comprehension of abstract concepts. Then, once those ideas are internalized, the “tangibles” (e.g., sandpaper letters, rearrangeable triangle pattern blocks) are no longer necessary. But by first introducing information concretely, we can present new degrees of abstraction and complexity as the child shows himself to be ready.
All developing minds first learn through sensory input: our most primal method of absorption and observation. That’s the best-case educational scenario for any child. But for our children, it’s an absolute necessity throughout life. Knock into a block tower and it will fall. That necessity for sensory learning is also why spectrum kids’ sensory defensiveness can inhibit the creation of necessary learning foundations. If you’re too put-off by the feel of rice, how can you fill up a funnel and watch gravity in action, or figure out how to unclog the traffic jam of grains?
Socrates said, “That which is held in the hand is then held in the heart” (and I would add, in the head). In order for a theoretical physicist to wonder about the impact of gravity on time distortion, does he not first have to see the stars with his own eyes?

Geometry for Asperkids

Most of us remember geometry being taught as an abstract series of rules, theorems, and propositions presented alongside figures 1, 2, and 3 meant to be memorized by students who couldn’t care less about the structural integrity of a hexagon. But geometry—like cooking and chemistry, math and musical scales—is actually rooted in our concrete world. You’d just never know it from the way most of us are asked to learn geometry concepts.
As a “Mensa-smart” (undiagnosed) Asperkid who relied on rote memorization (rather than comprehension) in geometry class, I get this to my core. Allow an Asperkid to pin strings or wooden sticks into parallel lines, cross them at random with transverse lines (i.e., with toothpicks), and then take some angle measurements. Once the child calculates the sums, you will have to explain nothing about transverse lines and supplementary angles. The child will discover patterns for himself and, in doing so, begin to notice other if–then patterns in history, social behaviors, game-playing, and even basic self-care skills.
Many famous people, confirmed or suspected spectrumites, are known for their capacity for unparalleled abstraction, luscious creativity (Emily Dickinson), radically complex theory (Albert Einstein), mechanical tenacity (Henry Ford), and endearingly witty humor (Charles Schultz). It’s just that our black-or-white, show-me-don’t-tell-me minds require the independent observation of patterns, trends, and possibilities from real things, not from someone else’s proclamations.

Getting to the Goal

We on the spectrum live in a world that can feel terrifying in its random cruelty, uncertainty, and inconsistency. That’s why we are, so often, aggravated by changes in structure, routine, and rules. We are not being obstinate for the sake of being obstinate; we are scared. And that is why, it seems to me, that the most difficult—and most important—thing for our loving families, friends, therapists, and teachers to convince us of is that there is “more than one way to get to OK,” whether that’s folding towels, solving a math equation, or packing a school bag.
In our home, I usually preteach academic concepts to my children before school teachers introduce them, ensuring that in-class sensory distractions or social anxiety doesn’t cost my Asperkids an entire instruction. Last week, my six-year-old son eagerly requested a new “Momma math” lesson (inspired by a biography of Albert Einstein!). However, he was resisting the same instruction at school because “the teacher does it differently” (actually, that’s not really so, but my son perceives any difference as major).
Much to his surprise, I began the math lesson by pulling out a local street map. Could he please, I requested, locate our home (he did), and then locate the grocery store (no trouble). Next, I produced three crayons, and asked him (first with his finger) to find three different routes from our house to the store: one he should trace in blue, one in red, and one in green. Again, no trouble.
After he had drawn, I “infused” the lesson into his body, asking him to close his eyes and just feel as I guided his hand along each colored path. Then, he did it again, eyes open, and indeed, each route he had traced led from our driveway to the same grocery store. When asked, my little navigator agreed that yes, even though some ways were longer than others, they were all “right” because they’d all get us where we needed to go.
All of a sudden, Mom broke the silence with a theatrical shriek. “Eek!” I yelled. “There’s a flood on Blue Road! We can’t get through, and we really need toilet paper! What can we do?”
“Mom,” he smiled. “Don’t freak out. Just take Green Road or Red Road.”
“Oh, OK,” I sighed. And then suddenly, I burst out again, “Oh no! Green Road just had a telephone pole fall across it. The road is closed!”
“Mom,” he shook his head. “So what? We can still take Red Road.” With dramatic nervousness on my part (and a whole lot of giggling on his part), I peppered him with the following: would we still get the toilet paper? Would we still make it to our goal?
Yes, he assured me, as long as we had a way to get there, we’d be fine. (“Aha!” moment ahead.)
“So, Sean,” I summarized, “if we understand what we need to get (toilet paper, answer to a question, or whatever), it doesn’t matter how we get to where we’re headed?”
“No!” he patted my hand. “We’ll still get what we need. Actually, we’re lucky. We’d be in trouble if we only knew one way!”
I smiled. “Hmmm…do you think maybe that’s true of other things, too? Like the math lesson at school?” He gave me a quizzical look. “Well, I was just thinking that maybe, kind of like with the toilet paper, the more routes or ways you have to get there, the more likely you are to get what you need.”
And then I got the look every parent knows, the “Oh! I see what you were doing there, Lady!” Yup. Sneaky me. A street map and toilet paper had just led him to reject the black-or-white, my-way-or-the-highway mentality and acknowledge that just maybe knowing another way of arriving at the same destination was not only OK, it was savvy.

We all need to be part of what we study in order to truly understand, whether that’s grammar (yay!), cosmology, art, animal husbandry, weather patterns, or social skills. To give your spectrum kiddo practical, academic, physical, social, and emotional skills, you must demonstrate, explain, and repeat and be sure to provide every notion in a concrete, measurable, observable format. Neurotypicals can also learn that way. We, on the spectrum, need to learn that way, to communicate that way (through writing, art, or construction), to play that way. We can and will sing, leap, laugh, and dream without limits, but before we can venture into the conceptual, before we can consider the abstract and wonder, we must stand squarely upon the concrete—and know.

Jennifer Cook O’Toole graduated with honors from Brown University and has since studied at the Graduate School of Social Work at Columbia University and Graduate School of Education at Queens University. She is the author of three books, including The Asperkid’s Launch Pad: Home Design to Empower Everyday Superheroes (Jessica Kingsley Publishers, 2013).

Copyright © Autism Asperger’s Digest. 2013. All Rights Reserved. Distribution via print is prohibited without written permission of publisher.

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Sensory Success in the Classroom

by Lucy Jane Miller, PhD, OTR and Britt Collins, MS, OTR
Autism Asperger’s Digest | Septemeber/October 2013

Many parents and teachers are concerned about how children with sensory issues can negotiate school and what effects their sensory issues will have on their learning. In the busy environment of a classroom, sensational kids can slip through the cracks.

We commend the many teachers who try hard to make sensible adjustments for our children! Training teachers to empathize with children who have sensory challenges can help create success—and enhance joy at school for teachers and children. Below we note subtypes of Sensory Processing Disorder (SPD) and provide ideas that might prove helpful in the classroom.

Remember this one important caveat: use sensory strategies that are good for all children. The less the sensational child is pointed out as different from other children, the better his self-esteem is likely to be. Know what strategies children need to succeed, and do these activities to improve the school experience for all children—typically developing as well as sensory challenged. Every child is different. If you find children who do not respond to simple sensory lifestyle changes (see suggestions below), be sure to refer them for a complete occupational therapy (OT) evaluation.

Sensory Overresponsivity (SOR)

Symptoms: does not like others standing close, afraid of kids who move quickly, difficulty participating in groups, struggles to tolerate sights, sounds, smells, and tastes in cafeteria

Strategies for SOR

Keep classroom quieter at times when children must concentrate.

Allow child to build up tolerance to group work, starting in pairs, then triads.

Provide movement breaks to help regulate arousal.

Sensory Underresponsivity (SUR)

Symptoms: slouches in chair or against wall, difficulty paying attention and answering questions, takes extra time to process others’ requests

Strategies for SUR

Wake up their bodies with fun, jazzy music, shakes, and wiggles.

Allow water bottles on their desk with lemon water.

Sensory Craving (SC)

Symptoms: difficulty sitting still, may wiggle around incessantly; may often touch objects and peers; difficulty interacting appropriately with peers (may be in their face or space)

Strategies for SC

Allow movement breaks throughout day.

Create smaller, less stimulating spaces so child can focus.

Include regulating routines in your schedule (e.g., yoga pose, deep breathing).

Postural Issues

Symptoms: falls out of chair, poor muscle tone, weak core strength, difficulty with fine and gross motor skills

Strategies for Postural Issues

Provide opportunities to work on strengthening exercises.

Evaluate need for seating adjustments (e.g., ensure feet can touch the floor when sitting).

Dyspraxia (motor planning problem)

Symptoms: difficulty with fine motor tasks (e.g., writing letters, cutting with scissors), challenges with gross motor tasks (e.g., climbing, playing soccer), trouble with sequencing tasks (e.g., craft projects), difficulty generating ideas for play because they have trouble following others’ ideas

Strategies for Dyspraxia

Break tasks into smaller chunks.

Encourage children to invent ideas (even if silly).

Try catching medium-size ball before small ball.

Movement is crucial for all children! Children are asked to sit for way too long without moving. How does your own body feel after sitting in a seminar all day? Our bodies need to move to set a foundation for learning in the brain. Furthermore, recess is not optional! Children need recess more than most people realize. It’s not just fun—think of it as brain food. Recess should not be sacrificed unless absolutely necessary. (If children need a consequence for misbehaving, do anything other than taking recess away.)

Focus on joy at school: a happy child learns more and tries harder. Look at how the child engages and participates in all areas—music, PE, lunch, recess. How does the child transition from the bus or car to the classroom at the day’s start, and from the classroom at the day’s end? Are other transitions difficult? What can be put in place to support the child during challenging academic and social times?

Remember, schools are mandated only to provide services that are educationally relevant. It lies in our responsibility as parents, teachers, and therapists to show how our requests relate to advancing educational outcomes. Talk about how the child’s functional abilities are affected, rather than his sensory needs.

Most of all have fun! Fun is the fabric that makes school engaging for children. The most you can wish for is that a child wants to go to school to play with friends and to learn. Receiving the sensory help he needs is a vital ticket to this success at school!

Resources
The American Occupational Therapy Association has developed a downloadable fact sheet and a complete PowerPoint presentation that highlight using natural settings, such as recess, to support learning and positive behavior. Your occupational therapist can access these materials for free! Ask him or her to provide an inservice for staff and parents.

BIO

Lucy Jane Miller, PhD, OTR, is the director of the STAR Center and founder of the Sensory Processing Disorder Foundation. She is the author of Sensational Kids: Hope and Help for Children with Sensory Processing Disorder.

Britt Collins, MS, OTR, is a pediatric occupational therapist. She is the co-author of the book, Sensory Parenting: The Elementary Years: School Years Are Easier When Your Child’s Senses Are Happy!

Copyright © Autism Asperger’s Digest. 2013. All Rights Reserved. Distribution via print is prohibited without written permission of publisher.

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Autism Moms Who Rock!

by Jamie Pacton, MA
Autism Asperger’s Digest | May/June 2013

Jamie Pacton is blown away by these Autism moms who rock, and all they have accomplished in such a short time.

Nicole Schumacher

Nicole Schumacher, wife of Paul and mother to Paul Jr. (14), Andrew (11), and Brooke (5), is the founder of love, Andrew—an autism foundation whose tagline—Believe It’s Possible—is the cornerstone of that overall mission” (loveandrew.org). The Schumacher family is usually associated with their custom homebuilding business, but it is now also known for fierce determination and tireless autism advocacy. Although Nicole has a PhD in psychology, it is through her youngest son Andrew, who was diagnosed with PDD-NOS (pervasive developmental disorder–not otherwise specified), that her work with autism really blossomed.

What were Andrew’s early years like?

It was a terrifying time in my life. I couldn’t take him anywhere. He would not respond to his name and would run off, which was a big safety issue. I had the strangest feeling of loss; I would think, “You have a child physically in front of you, so how do you mourn the loss of a child who’s still there?” What I realized was, “I can’t parent him in the typical way, so I’m going to have to do something unconventional!”

What is Andrew like now?

He’s the easiest child I have! Now he’s in fourth grade in a regular classroom, although he leaves the classroom for certain things. And he has friends. Every morning he gets up, takes a shower, makes his own food, and is a part of family life. We still work on many things, but he doesn’t have tantrums anymore, and he’s very affectionate and sweet.

Which programs helped Andrew?

I found the Son-Rise program first (autismtreatmentcenter.org). It really helps parents help their kids. I set up a home program and we worked with him tirelessly. After that, we also started working with Brain Balance, which is a neurological hemispheric program (brainbalancecenters.com). They test the child on factors like eye movement, balance, and other things that might indicate brain function on one side of the brain or the other. We still do Brain Balance exercises daily, and Andrew has shown great improvement.

What are your goals for love, Andrew?

Our autism foundation love, Andrew is intended to help school systems better learn to help and accept children on the spectrum. Through education, training, and exercises like replicating the sensory overstimulation a child with autism faces, we’re trying to reverse the idea that kids with autism are just behavior problems who need to be disciplined for things they cannot help. At Andrew’s current school, they have seen his struggle and know how far he’s come. They treat him like he’s part of their family. That’s the attitude we’re hoping to foster in other schools.

What are some of your long-term family goals?

Of course we want to grow the love, Andrew foundation and continue to help Andrew develop. We also hope to start building homes for families of kids with autism. Many people in the building community are willing to donate household components—like special bathtubs, for example—that can help a family create a home that is less challenging for a child with autism to live in.

Jess Wilson

Jess is the voice behind the popular autism blog Diary of a Mom (adiaryofamom.wordpress.com). She and her husband, Luau, are raising two daughters: 11-year-old Katie, and 9-year-old Brooke, who has PDD-NOS (pervasive developmental disorder–not otherwise specified).

How did the diagnosis change your family’s life?

First, it gave us what I call the keys to the toolbox, offering us invaluable insight on how to help Brooke learn, mitigate some of her toughest challenges, and leverage her incredible talents and skills (and sense of humor!) to become the amazing little human being that she is today. Second, it gave us the keys to the village, an entire community of people who have walked a similar path. This was priceless for those of us who love her, but it’s also invaluable for her. The idea that there is a group of people who have traveled this road ahead of her—who are waiting to welcome her with open arms, who have looked at the world through a lens that is similar to hers. This offers me comfort like nothing else can.

What do you get from writing Diary of a Mom?

In addition to a place for me to process the overwhelming moments, it’s also become a beautiful living, breathing community of people on the spectrum, those who love them, and a few who found it quite by accident and never left. I am so grateful for each and every one of the denizens of the Diary village. As it says on the blog’s About Page, “It is a sense of community that makes the good times sweeter for the sharing and the hard times more bearable for knowing that we’re not alone.”

What are some of your favorite posts?

“Welcome to the Club” is probably my all-time favorite. I really like “Person First” as well. For me, it’s a great illustration of my evolution as my girl’s Mama—from a parent whose understanding of autism came from the outside to one whose insight comes, as much as possible, from the inside. “D Day” is another one. It’s not my best writing by a long shot, but the message is an important one to me. A diagnosis does not change your child. You leave the doctor’s office with the same awesome kid you went in with. The only difference is that now you have those precious keys that I mentioned earlier.

What have you learned along your journey?

To slow down, to open up, to greet everyone with compassion and patience and an open mind. That words are not always necessary to communicate, and sometimes they muddy the message. To treasure varied perspectives, to reserve judgment, to celebrate each and every victory no matter when or how it comes. To reject timelines and so-called norms, to eschew pretense and celebrate all that is gritty and real. To ask for help and to accept it with grace. That everyone—absolutely everyone—has something to contribute and that if we take the time to help dig for it, we will all be richer. That words matter. That the way we talk about autism informs the way that people perceive our children.

What advice do you have for parents of a newly diagnosed child?

Remember that a diagnosis does not change your child. No one word has the power to determine the trajectory of a life. Take time to digest it all, then jump in with open eyes and an open heart. Seek out varied perspectives: listen to parents and doctors and therapists, but above all seek out adults on the spectrum who can offer insight from the inside out. Find the village—for you and your child.

Erin O’Loughlin

Erin and her husband Colm are parents to Jordan, Marcus, and Brendan. Marcus was diagnosed with moderate/severe autism at the age of three, and now he’s eight years old. Erin is already thinking about the time when “the school bus stops coming,” and she worries about what will happen to all the children with autism once they hit their adult years. In addition to creating a nonprofit organization, 3 Irish Jewels Farm, which will provide assisted living for adults with autism in North Carolina, Erin has published a children’s book, The Bluebird Dance, with 100 percent of the sales benefiting the farm.

How does Marcus’s autism affect him?

Marcus defies a lot of the stereotypes of autism. He makes eye contact with me, and he loves cuddles, back rubs, and hugs. I once read something about the comparison of backpacks and autism. Everything has to fit into the backpack and be carried. If it isn’t useful, it isn’t taken. Marcus’s life is like that: his backpack is extremely limited. There’s only so much we are going to be able to pack into it for him, so each item has to count. Must he learn to add 2 + 2 by hand? No, he can use a calculator. Does he have to learn how to define words? No, he needs to know how to communicate.

What are your dreams for 3 Irish Jewels Farm?

3 Irish Jewels Farm will provide assisted farm living and day programs for adults with autism, and summer and day programs for children with autism. Residents, surrounded by peers and caring staff, will have opportunities to work, participate in leisure and recreational activities, and learn skills.

The farm will be built in several phases. Once land is acquired, the adult day programs and horticultural programs, along with the children’s summer and track-out programs, will complete phase 1. Phase 2 will consist of a capital campaign, with plans to build several one-story homes clustered around a communal area. The residential program will be self-sustaining, partially relying on funding from Medicaid, Medicaid HCBS (Home and Community-Based) waivers, Social Security, and local sources.

What role will you play at 3 Irish Jewels Farm?

I will be doing much of what I’m doing now: designing, developing, and implementing strategic plans. I will also be responsible for the day-to-day operation of the organization, including managing and overseeing committees and staff and developing business plans in collaboration with the board of directors.

I’d like to think that Marcus is a farm boy at heart since he loves to be outside—running around, swinging, being at one with nature. He loves animals and is absolutely enthralled with horses. So, my ultimate dream would be to mesh those two dreams together—my dream for Marcus’s future happiness and my dream for 3 Irish Jewels Farm to get off the ground. I envision Colm and I living on 3 Irish Jewels Farm in the main house, Marcus living in one of the individual homes, and providing a place for adults with autism to call their home.

How can parents set up similar farms in their communities?

First, take a look at, become familiar with, and get to know the members of Agricultural Communities for Adults with Autism (ac-aa.org). Learn how to operate a nonprofit organization and how to start one from the ground up. I relied a lot on the book How to Form a Nonprofit Corporation by Anthony Mancuso. Hire an attorney to help with getting your tax-exempt status. Finally, check out Bittersweet Farm’s WISDOM program (home.tbbs.net/semisweet/store/wisdom.html), a wonderful webinar series on starting a nonprofit farm program serving people with autism.

What have you learned from Marcus?

I view my relationship with Marcus as a journey. He has brought me a new outlook, a deeper understanding, a new appreciation of what patience is all about. And, for the most part, the journey has been beautiful.

Patti Moore

Patricia (Patti) Colley Moore is a fearless single mother of two unique boys, Liam (18) and Aidan (11), both of whom have autism spectrum disorder (ASD).

Her husband left her three years ago on Mother’s Day, but in the time since then, Patti’s accepted her new parenting role with grace. An avid music fan and surfer, she encourages her boys to try all sorts of activities like surfing, skateboarding, skiing, and sailing. She travels with them all over the United States, plans to take both of them to Africa this year, and would like to see the world with them in time.

Could you tell us a bit about your boys?

Liam and Aidan are very different, despite both having ASD. We’re a family of individuals who are unique. Aidan is a fiery ball of energy; he’s passionate and mercurial. Liam is my “Buddha boy,” and he tends to go peacefully with the flow of our lives. They both love to draw, write stories, listen to music, and be in the water or snow.

How has your sons’ ASD diagnoses changed your family’s life?

Liam was diagnosed later, at age three and a half, since he was undergoing surgery for a cleft lip and palate. His diagnosis sent me into a deep depression, and I despaired. We had to move from New Orleans (a city I loved, and one where I thought I’d raise my children) to Boston, where there were better ASD services. Aidan got his diagnosis at 18 months, and I was not as surprised because the idea of him having ASD had always been in the back of my mind. For me, having two sons with autism meant that my supreme focus became helping them.

Why did you choose to go into the field of special education?

I think being a parent of children with special needs has given me a toolbox of ideas to try in the classroom. Also, I feel a deep sense of compassion and respect for these children, and I truly believe in never giving up on a child.

What have you learned as a mom to two children with ASD?

First, it’s taught me patience. Everything works out, but it takes time (sometimes lots of time). And it has taught me how different we all are, and I’ve learned to accept those differences with an open mind.

What advice do you have for parents of a newly diagnosed child?

Never, ever give up! Just because something is hard the first time your child does it, does not mean it always will be. These children are amazing—they think so out of the box, and there are no limits to their creativity! My sons have helped me slow down, expand my mind, and appreciate life. This journey is a gift, not a punishment.

After Liam’s first time surfing, one of the surfers said to me: “Autism is like the wave, go against it and you are fighting against something you can’t win, but ride with it, and what a ride it is!”

BIO
Jamie Pacton, MA, is a writer, professor, and mother to two boys (one who is on the spectrum). She is also the author of The Early Years column, featured in each issue of Autism Asperger’s Digest.

Copyright © Autism Asperger’s Digest. 2013. All Rights Reserved. Distribution via print is prohibited without written permission of publisher.

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Autism Around the World: Canada

by Vicki Harvey and Michelle Samagalski
Autism Asperger’s Digest | July/August 2013

Access to programs and services for those with autism spectrum disorder (ASD) and their families in Canada is much like buying a piece of real estate. It’s all about location, location, location. In Canada matters of national concern are managed and funded by the federal government while matters of local concern are handled by the ten provincial and three territorial governments. Health care and education are considered local matters, so each province or territory has legal and financial responsibility to provide these services. As a result, each province/territory has created services and programs that best suit its local population (but this does not allow for a uniform program across the country). In addition, the amount of funding and services vary from province to province, territory to territory. What your family can access at different ages and stages depends on where you live.
In recent years, the federal government has begun to hear from and respond to families and others concerned about the needs of persons with ASD. Several national meetings, a study by the Canadian Senate, and regular advocacy on the part of national and provincial autism organizations have created a consistent public voice in the federal government’s ear. Currently the government has committed to developing a national surveillance system to record proper statistics on individuals with ASD in Canada. The proposed system is targeted to be active in 2015.

Early Intervention

Each province has developed an assessment and diagnosis regimen and strives to diagnose children as early as possible. The territories have different approaches: Yukon provides assessment and diagnosis within the territory while the Northwest Territories and Nunavut send children to other provinces for assessment. Once a diagnosis is achieved, a treatment plan can be developed. Publicly funded services for preschoolers diagnosed with ASD are available in each province, but they differ in type of program and length of time a child may stay in the program. All provinces offer a program based on a behavioral model whether that is ABA (Applied Behavioral Analysis), IBI (Intensive Behavioral Intervention), or PRT (Pivotal Response Therapy). Children will have services for anywhere from 15 to 40 hours a week, for at least a year. The territories again differ, with publicly funded autism preschool services available in the Yukon and the Northwest Territories. Nunavut does not provide funding for specific autism services at this time.

School-Age Services

The transition to school often means a different focus for autism services. In all provinces and territories, the education system takes over the programming and supports for students with ASD when they are five to six years old. Again, there are no national standards for ASD programs or services and each province or territory develops its own approach. The idea of inclusion has been generally embraced in most places in Canada, although it is recognized that inclusion may not look quite the same for everyone.
All provinces and territories develop an individualized plan if that is what is needed for the student. Some students do not require a full adjustment to their program and will do well with adaptations or accommodations to support their learning style. Other school supports may include professional services, specialized teachers, teaching assistants, learning centers, resource rooms, and self-contained classrooms.
There are certainly limits on services everywhere, with wait times for some services. Urban centers have far more resources than rural ones; however, these also have greater demands on available resources, since more individuals are diagnosed in cities than in the rural areas. Only two of the provinces, British Columbia and Alberta, offer annual funding to families with children 6 to 19 years of age for additional programming.
The increase in the number of students with ASD has resulted in school boards across the country increasing their pool of autism specialists. In addition, the provinces (but not the territories) have developed handbooks (available online) to guide educators, administrators, and parents in meeting the needs of students with ASD.

Support for Autism Families

And what about support for families of children with ASD in Canada? There are active autism societies in most provinces and territories. Autism Society Canada, a national federation of Canadian autism organizations, has representatives from all provinces and territories except New Brunswick and Nunavut. All the societies work to help families find good information and resources. They are mostly staffed by parents who share their knowledge and experience to help others as they try to navigate the sometimes complex systems within their communities. Families can be connected to local autism societies through Autism Society Canada’s Autism Junction Service Directory (a national resource).

Into the Future

Canada has moved forward in supporting early identification and interventions for children with ASD. However, focus must shift to the needs of adults in the autism community. Supports, services, and resources diminish as children with ASD transition into adulthood. Improving opportunities for housing, employment, and quality of living is the next frontier faced by families of people with ASD in Canada.

Vicki Harvey is the Community Outreach Coordinator for Autism Nova Scotia. She has a 22-year-old son with an ASD.

Michelle Samagalski manages the affairs of disabled adults for the Public Trustee of Manitoba. She has a background in finance and law. Her 22-year-old daughter has an ASD.

Copyright © Autism Asperger’s Digest. 2013. All Rights Reserved. Distribution via print is prohibited without written permission of publisher.

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Expressive Arts: Learning, Growing, and Expressing

by Joanne Lara, MA, and Keri Bowers
Autism Asperger’s Digest | September/October 2013

A boy sings a glorious song in the holiday chorale and walks offstage in silence; he does not speak. A young girl dances with a troupe of dancers swaying rhythmically to the music. Her dancing does not reveal her inability to make friends in the “real world.” A child paints a seascape of the origins of a culture far away. He communicates feelings, desires, and dreams through the beauty of paint, charcoal, and paper montage, but he cannot tell his mother what he did at school or that he loves her.

Art: A Common Language

As a society, we are now moving forward past the doom and gloom idea that was pervasive in the early 2000s when children with autism spectrum disorder (ASD) were labeled without regard for who they were and what their personal likes and wants might have been. Traditionally we would apply a formula of strategies and educational programs to assist children with ASD without considering their intrinsic personalities and strengths. However, we see that as these kids have entered adulthood, many have begun to speak for themselves saying, “Help me, but please do not erase who I am.” And so we see that one way to appreciate each individual’s uniqueness is to help him access the arts while nurturing his abilities to be in the world. For many individuals on the spectrum who have difficulties connecting, art can be an integral, valid part of therapy—a tool to show us who they are and what they are made of.

Art expression comes through, within, and beyond limitations of the human condition. Art is the common language that cuts across racial, cultural, social, educational, and economic barriers. It is a language that defies impaired neurological, physical, and so-called disabled dimensions. Art is a language that all people speak. Visual arts, dance, movement, music, drama, writing, speaking, or other creative mediums of expression—all the fine arts—are the one historical tie that defines who we are. Art explains what sometimes science cannot; it is the soul of our human existence.

Art as Therapy for Spectrum Kids

For many with special needs, the arts are not merely enrichment. Rather, the arts are a staple, a means to develop more than cultural or appreciative values. The arts provide opportunities to develop language, cognition, fine and gross motor skills, social and life skills, self-esteem and self-expression, and even the opportunity to define potential career paths. The arts are an avenue to developing an otherwise unheard voice. As a vehicle to expression, the arts have the capacity to bring a voice to every human being, encouraging the inner world to connect to the outer world of concrete reality.

We have come to see that the arts allow for both independence and collaboration for individuals who otherwise may have challenges in these areas. Through dance or music, you and your child may be able to access personal strengths in meaningful ways, to create a bridge to understanding sometimes difficult abstractions, or to create meaningful communication. Empirical data show us that the arts often increase academic achievement, enhance test scores, and improve attitudes, social skills, and critical and creative thinking (McGarry and Russo 2011). Tones, notes, movement, color, and vibrations support an exercise in developing higher-level thinking skills, including analysis, synthesis, evaluation, and problem solving (Wan et al. 2010).

Not too long ago, art therapies were rated second to traditional therapies. The arts were not, and are still not, considered to be best practices. Because of this, many parents and professionals have been reluctant to entertain the idea that dance, movement, music, visual arts, theater, and animation are programs compatible with traditional therapies. However, change is on the horizon. With this change in ideology and the valid results the arts provide, not to mention low- and no-cost interventions, we now see how the arts significantly improve an individual’s brain development in the domains of cognitive, social, and behavioral deficit.

So much has the pendulum swung in favor of the arts that we now see large organizations like Autism Speaks funding grants at Harvard University to study how movement and music affects the brains of individuals with ASD. We have come a long way to begin to accept the arts as powerful, fundamental tools and strategies that not only benefit our kids but become pathways both literally and physically to academic achievement, social inclusion, and community acceptance.

Studies indicate that forward and backward movement—and the starting and stopping, side-to-side motion—paired with music helps stimulate transmission of information in the brain. Temple Grandin tell us in the documentary, Generation A: Portraits of Autism and the Arts, that music is processed in the frontal and temporal lobes of the brain, and that the rhythm and balancing that dance requires could contribute to our kids’ speaking progress. The Horse Boy, by Rupert Isaacson, and music therapy as described in Oliver Sack’s study at Columbia University, Musicophilia, add insight into the stimulation of areas of the brain using rocking and music, respectively. Visual arts such as painting, drawing, and sculpture often require dormant brain areas to become activated. Many respond to theater and the performing arts with gusto. It is important to find out how your child learns—visually, kinesthetically, or auditorily—to make certain he has access to the intrinsic modality through the arts, which enrich and give meaning and understanding to ourselves and the world around us.

In the end, we know that social skills and expression are a huge challenge for spectrum kids. Our kids are often not able to initiate, create, and sustain meaningful conversations due to speech and language impairment. Faced with their difficulty in both speaking and the cognitive pragmatics of speaking (ideas of language) that are the foundation of all human social interaction, how do we raise the bar? To meet this need, Autism Movement Therapy was especially designed for individuals with ASD to jumpstart the integration of neurological transmission of information between the four lobes of the brain via the corpus callosum (Lara 2009). The results have been outstanding. Many of our kids have performed in national theater performances through working with Autism Movement Therapy and The Art of Autism. They have built a portfolio of experience and been lifted to see and share their potential as the unique and gifted individuals they are.

Last year, 77 artists and poets with ASD from around the world were included in the book, The Art of Autism (www.the-art-of-autism.com). Four of the artists included in the book were recognized by the United Nations with Autism Awareness stamps depicting their works of art. How do you imagine that changed their world, their beliefs, their confidence in themselves? What benefits have these artists and poets gained from the exposure, recognition, and potential resume experience? We know your child has unknown talents. Share his gifts of autism through the arts. Be a part of the art movement!

BIO
Joanne Lara, MA, Founder, Autism Movement Therapy Inc., is the recipient of two Autism Speaks grants, autism expert for the TV show Touch, and an adjunct faculty member at National University in Los Angeles. Visit Autism Movement Therapy, Inc to learn more.

Keri Bowers, co-founder of The Art of Autism and owner of Normal Films, is the creator of Normal People Scare Me, The Sandwich Kid, and ARTS—all films about possibilities, disabilities, and the arts. Visit Normal Films and the-art-of-autism.com to learn more.

Editor’s Note: Love this article about the expressive arts? Then watch for the new column by Joanne Lara and Keri Bowers, spotlighting autism and the arts, beginning in the January/February 2014 issue of AADigest!

References
Lara, J. 2009. “Autism Movement Therapy®: Aut-erobics® Movement & Music Sensory Integration to ‘Wake up the Brain’.” Autism Asperger’s Digest, February/March, 39–40.

McGarry, L. M., and F. A. Russo. 2011. “Mirroring in Dance/Movement Therapy: Potential Mechanics behind Empathy Enhancement.” The Arts of Psychotherapy 38 (3), 178–184.

Wan, C. Y., K. Demaine, L. Zipse, A. Norton, and G. Schlaug. 2010. “From Music Making to Speaking: Engaging the Mirror Neuron System in Autism.” Brain Research Bulletin 82, 161–168.

Resources
Hosseini, D. 2012. The Art of Autism: Shifting Perceptions. Carpinteria, CA: The Art of Autism.

Isaacson, R. 2009. The Horse Boy: A Father’s Quest to Heal His Son. New York: Little Brown and Co.

Lara, J. Generation A: Portraits of Autism and the Arts. DVD. Los Angeles, CA: Joanne Lara [in production].

Sacks, O. 2008. Musicophilia: Tales of Music and the Brain. New York: Alfred A. Knopf. http://www.oliversacks.com/books/musicophilia/.

Copyright © Autism Asperger’s Digest. 2013. All Rights Reserved. Distribution via print is prohibited without written permission of publisher.

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Communicating about Communication

by Ben and Bobbi Sheahan
Autism Asperger’s Digest | September/October 2013

Everyone knows that communication is central to a successful relationship. What about relationships in which one partner has Asperger’s Syndrome?

Asperger’s Syndrome (AS) tends to include anxiety, social challenges, and a heightened need for routine. Both of us can tell you what it’s like to be married to someone with AS, so we can share what we’ve learned about conflict and communication. We offer a few thoughts with the humility that comes from knowing that we are hard to love, just like everyone else.

Be Clear

Ben: Be sure that you understand what’s being said to you. I tend to think in numbers, and Bobbi tends to think in pictures. If I refer to “What happened on the 17th at 3:00 p.m.,” she has no clue what I’m talking about.
Bobbi: If I say, “You did THAT,” or if I use a phrase that makes no sense to Ben, we don’t get anywhere. We try not to use pronouns or idioms.

Say No

Bobbi: There’s a phrase that Ben likes to use: “A no is as good as a yes.” Well, yes and no.
Ben: People like us tend to be one extreme or the other: either we can’t say no, or we say no to everything. Imagine when these two types marry each other! Mr. No has to learn to say yes to his bride more often (my recommendation: most of the time), and Mrs. Yes may need to learn some stock phrases like, “I’ll have to think about that,” or “I wish that I could.”

Praise and Appreciate

Ben: I try to be sure, every day, that my wife knows that she is the most important person in my life. Over time, we’ve modified this for Aspies, because we can ascribe too much importance to things: she must know that she is the most important noun in my life—the most important person, place, or thing.
Bobbi: Attention to detail is a core trait in Aspies; we need to remember to notice positive details and not just little things that get on our nerves. We try to give each other five compliments or affirmations for every time we say something negative or critical to one another. It can seem a bit artificial, but it’s always nice to be on the receiving end.

Alone Together

Bobbi: If you both have interests that tend to be solitary—reading, long walks, TV, or video games, for example—draw lines around the time you spend separately pursuing those interests. In our house, we decided it was much simpler to just banish TV altogether.
Ben: This one can really be a struggle for men. It’s easy to find the other Aspie dads at the soccer game because they’re the ones focusing on their laptops and tablets. We have to find the balance so that we get to have some alone time while not isolating ourselves so much that it harms our relationships.

Learn Social Skills

Bobbi: Our friend, author Jennifer Cook O’Toole, is especially good at encouraging Aspies to learn to ask questions and show interest. Those skills can help break the ice at the start, but they’re arguably more important after you’ve been together for a while.
Ben: Keep reminding yourself not to take your spouse for granted. Be proactive about apologizing, show interest in what the other person is saying, and check in with each other about what you’re feeling.

I’ll Be Right Back

Ben: When things are stressful, you may need to walk around or stim, and that isn’t a rejection of your loved ones. You may not think that you are stimming; you may not realize that you are doing anything at all. Ask your friends and family, “This may sound weird, but can you please describe what I do when I’m upset?” and “How does that make you feel?” The answers might surprise you.
Bobbi: Study people who handle conflict well. Learn phrases. These are skills that can be learned.

Structure versus Chaos

Ben: What level of structure makes you both feel safe without feeling like you live in a military installation? In terms of time, money, and environment, what type of life do you want? All of this, as well as the transition into marriage itself, needs to be negotiated.
Bobbi: Another aspect of combining your lives is your physical environment. One of you may be a neat freak and the other may be ready to audition for Hoarders. Or one of you may love to have music or TV on as background noise while the other finds this insufferable.
Ben: Even the temperature of the house can be a battleground.
Bobbi: Oh, yes. Ben would live on the surface of the sun if there were real estate available.

I’ll Stand by You

Bobbi: Aspies can be criticized for being rigid, but rigid sounds so negative. How about loyal, hardworking, persistent, and able to stick to a schedule? I wasn’t complaining about Ben when our kids were babies and I needed sleep, let me tell you.
Ben: The same can be said for anxiety; how about praising one another for being careful instead? When we are backing our vehicles out of our garage, we are one step away from using an air traffic controller to make sure that our kids are safe.
Bobbi: And don’t get us started about babyproofing!

Please Shut Up

Ben: Let’s talk about arguing with an Aspie.
Bobbi: It’s good to have ground rules. Both of us have the tendency to go on and on. We have a signal that’s more polite than “shut up” but basically means the same thing.
Ben: Learn to be aware of your facial expressions, or at least accept the fact that you are unaware of your facial expressions. Bobbi will say, “Are you upset?” I’ll say “no,” and she’ll say, “Tell your face,” and I’ll realize that I look intensely upset or totally disengaged when I’m really not.
Bobbi: I’ve been known to laugh at the wrong times, and I work very hard to control it. It got me into a lot of trouble when I was a kid. It’s also not the best plan in a relationship.
Ben: We also try to agree on built-in deal breakers before we start the discussion. Is this a Two-Yes or a One-No Decision? Agreeing on that beforehand can help you cut to the chase.
Bobbi: Another of our ground rules: don’t repeat yourself more than twice.

Just Say It

Ben: One of the much-discussed Aspie traits is “mind blindness”; intellectually, I know that she isn’t seeing what I’m seeing, but I don’t actually get that. That’s not a reason to fight; it’s an opportunity to clarify.
Bobbi: No hints! Be direct. If you want something, don’t make him guess. Say, “I want a necklace.” Or, better yet, “Look at the necklace you just got me!” Also, if your honey tends to be task-oriented, you can make a project of it. We once spent date night at a department store, and I tried perfumes until we found one that we both liked.

Attention to Detail

Ben: When we were dating, I bought Bobbi earrings for her birthday. My perfectionism, curiosity, and attention to detail all went into high gear. To my credit, I visited only 20 percent of the jewelers I contacted, which means that I visited 14 of them.
Bobbi: Eleven years we’ve been married, and I’m still happily wearing my earrings. I can picture a parallel universe in which Ben is still looking for the perfect jeweler.

Your Children’s Behavior

Ben: For a long time, my daughter and I were getting along so well that I didn’t really tune in to the fact that she was nonverbal. I’d spend hours pushing her on a swing or sitting quietly with her, and we were communicating just fine.
Bobbi: Many parents complain that their partner is not sufficiently engaged with their child with autism. I always encourage them to consider that their partner may also be on the spectrum and may actually be relating very strongly with their child.

Let It Go

Bobbi: They don’t call AS “Little Professor Syndrome” for nothing. Resist the urge to correct each other. Let lots of things go. I can be hypervigilant about locking doors; I can make a big deal of it, or I can just check the doors.
Ben: Another example in our house involves food. Bobbi will cook and prepare and put more choices on the table until I say, “How can I help you sit down?” It wouldn’t help if I got upset with her for making her task bigger; I learned this the hard way in our early years of marriage. If I prepared every meal, we’d eat oatmeal or bread and cheese three times a day. We can kid each other about these differences, but it would do us no good to try to change each other.

He’s Not Ignoring You

Bobbi: I have had to learn to get Ben’s attention by doing things other than raising my volume. He’s not ignoring me; he’s just focused on something else.
Ben: It helps if you eliminate distractions. Instead of turning up your volume, turn down the volume on other things. This applies to sound, but it also applies to any kind of distractions.
Bobbi: This road runs both ways; if I think that I’m multitasking, Ben thinks I’m ignoring him. I don’t stim in the traditional sense, but I love to have something to do with my hands. I have learned to find things like knitting, which allow me to focus my attention on Ben when he is talking, instead of doing a crossword or working at the computer.

“I Disagree” Doesn’t Mean “You’re Bad”

Ben: When she said that she didn’t want to eat oatmeal every morning of her life, she didn’t say I was wrong or evil; she expressed a differing opinion, and that’s her prerogative. Obviously, she’s wrong, but that’s still her prerogative.
Bobbi: After we’d been married for several years, I realized that occasionally having a little oatmeal was like giving a gift to my husband. He is delighted when I eat oatmeal with him. No kidding. I can choose to be irritated or I can say to myself, “How easy was THAT?”

Learn The Quirks

Ben: Everyone has their pet peeves. There are things about me that nobody but Bobbi would want to live with and vice-versa. Everyone who has been married for a while realizes that this is true about their marriages as well, but we need to actually acknowledge this and say it aloud.
Bobbi: The small things can make life easy or hard; it’s part of knowing and accepting each other. I learned early in our marriage that my husband doesn’t like surprises. Can you guess how I learned that? Yes, I threw him a surprise party.

Don’t Overwhelm Yourselves

Ben: We need to be reminded to do this for ourselves and for each other. It doesn’t matter whether you think it makes sense or not. Each of you should be able to call a time-out at any time and say, “I’m overwhelmed.” In my opinion, this would eliminate the majority of relationship conflicts.
Bobbi: There are topics and tasks that I won’t even bring up on a workday because I know that would be too much. Speaking of “too much,” I recently read that women with AS can seem overly social because we’re overcompensating, trying to fit in. That resonated with me to an uncomfortable degree. To the extent that it’s correct, it can cause undue stress on both spouses.

In Conclusion

Bobbi: The skills that would be helpful in any relationship can be even more important for us because of AS traits like difficulty reading body language, the inability to shut up, or the tendency to be in our own little worlds.
Ben: If we are task-oriented and anxious—even about things that are supposed to be fun—we’d never give each other any peace. We set out to write about conflict resolution, but in our discussions, we both kept coming back to gentleness and kindness and having fun together.

Want to learn more? We recommend Loving Mr. Spock: Understanding a Lover with Asperger’s Syndrome by Barbara Jacobs (Future Horizons, 2004).

BIO
Bobbi and Ben Sheahan have been married for 11 years. They have four children, one of whom inspired Bobbi’s book What I Wish I’d Known About Raising a Child with Autism (Sheahan and DeOrnellas, Future Horizons, 2011).

Copyright © Autism Asperger’s Digest. 2013. All Rights Reserved. Distribution via print is prohibited without written permission of publisher.

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Partnering with Your Child’s Pediatrician

by Paul Carbone, MD, and Alan Rosenblatt, MD
Autism Asperger’s Digest | September/October 2013

A partnership built on mutual trust between you and your child’s
pediatrician can have great benefits for you, your child, and your family.

Going to a doctor can be stressful for children with autism spectrum disorder (ASD). The idea of someone touching your face or skin, and even poking and prodding your body, can cause enormous anxiety for a child who may already be extremely sensitive to stimuli. A doctor’s visit is also a change in routine. It might mean taking your child out of school early, interrupting a therapy session, or changing his meal schedule. The waiting room can be stressful, too, especially if there are several other children, and the wait can be long.

As a pediatrician and a father of a child with autism, Dr. Carbone is often asked by parents how they can get the help they need from their child’s doctor. Dr. Carbone and Dr. Rosenblatt see the relationship between parents and their child’s pediatrician as a partnership in which shared goals are developed and decisions about treatment are made together. In this article we’ll provide some tips on how to establish a good working relationship with your child’s pediatrician and not only survive a doctor visit but how it can actually be fun for your child. A partnership built on mutual trust between you and your child’s pediatrician can have great benefits for you, your child, and your family.

Preparation Is Key!

Talk to your child about what he can expect at a doctor visit. Look for books and videos that can show your child in a positive way what takes place. Many pediatric practices have websites with photos of the pediatricians and staff and even tours of the practice so that your child will know who she will be meeting and what the environment looks like. To teach your child, try presenting appropriate behaviors in the form of a story with pictures about how to behave in or react to a situation.

To make some of the procedures less frightening, practice some at home first. Take your child’s temperature or blood pressure. Look inside her mouth with a tongue depressor. Listen to her heart with a stethoscope. Purchasing a toy doctor’s kit beforehand can help her become familiar with the doctor’s instruments, too. You might want to rehearse your visit in advance as well.

Parent as Partner

To be a good parent partner, it’s important to be an active player. Bringing a list of questions and concerns to discuss can help focus the appointment on what is important to you. Be prepared to update your doctor about changes in your child’s health and circumstances, such as changes in medications and treatments.

Of course, it’s important that you let your pediatrician and the staff know how to help make visits manageable for your child. If your child needs time for the doctor to make him comfortable, or if you have a concern that might take a while to sort through, ask if you can book a longer appointment. Tell the office staff what bothers your child, but also share what comforts and interests her. For example, Dr. Carbone has several families who have him give their child an after-visit treat they have brought along as a reward for good behavior during their time together.

You can also inform your pediatrician if you prefer to separate procedure visits from routine examinations. If your child might need a vaccine or an uncomfortable procedure, talk to your pediatrician about how to best share that information in a way that your child can understand. Likewise, it’s okay to ask your pediatrician to explain what he will do during the exam if that will decrease your child’s anxiety. For example, Dr. Carbone will generally tell a child that he is going to listen to her heart for 10 seconds, count during that portion of the exam, and then celebrate with tickles when reaching 10. This breaks the exam into less stressful portions and provides predictability for the child.

Consider your pediatrician a key source of information, but always do your research and gather information from other sources, too. Don’t be shy about telling your pediatrician of plans to ask other healthcare professionals for advice and second opinions. In fact, most pediatricians welcome a second opinion and may even give you a referral to another expert. And whenever possible, give your doctor feedback on how he is doing. Send a thank-you note for a suggestion he makes that worked out well. Let him know when something doesn’t go well, too.

Waiting…and Waiting

If your child has a hard time waiting, you might decide to book an appointment early in the day as these tend to have shorter wait times. If sitting in the waiting room is too stressful, ask if you can wait in the car, or somewhere more comfortable for your child and be called on your cell phone when the doctor is ready. Many practices now are making these and other accommodations.

When Real Life Hits

Sometimes, even with all your best efforts, a doctor’s appointment can be challenging, especially if your child didn’t get enough sleep the night before, or she is fearful about an impending immunization. In this case, you simply have to do the best you can to keep the appointment moving, so you can reduce your child’s time at the doctor’s office. Enlist help from your spouse or a friend to accompany you. Bring a favorite toy or object that your child finds soothing. Do what you can to calm your child during the actual visit. You may choose to finish the appointment with a special reward, which will help your child associate doctor visits with something positive and enjoyable.

While doctor visits can lead to some challenging moments, your child deserves the same access to quality health care as other children. By partnering with your pediatrician and the staff, you can get your needs met and reduce your child’s stress during visits.

The Successful Doctor Visit (sidebar by Dr. Alan Rosenblatt)

The good visit starts with an upbeat and welcoming staff who are sensitive to the child’s special needs followed by the doctor who takes time to bond with parent and child in a nonthreatening manner. The doctor should be flexible about accommodating the child’s ability to tolerate an exam, which may take place on the parent’s lap, the exam table, or standing up.

The exam starts as noninvasively as possible and saves the most threatening aspects of the exam until the end. I like to start by checking the hands and feet and then moving to the trunk and head. Whenever possible, I try to be playful, making a game out of the necessary components of the exam. I allow the child to handle whatever instruments I use and practice the examination that I am about to perform. Humor helps with some children but may irritate others.

In certain circumstances no amount of charm or sensitivity will be able to calm a child’s raging fear. In those situations I try to express my empathy and complete the exam as efficiently as possible. I try to make up for my invasion of the child’s body and personal space by declaring an end to the hard part of the visit and allow the child to be comforted by her parent. I will provide tissues to wipe away tears and drippy noses, and may try consoling the child by rubbing her back. Once the child is dressed and calmer, I may offer a special toy or activity for the child to do in order to show that I want to be friends again.

After finishing my discussion with the parent, I check to see how the child says good-bye. From the child who responds to me, I will try to elicit a high five. If he is forgiving in his response, I will even try to get a hug. If he ignores or avoids my overture, I will praise his bravery and say how proud I am of his attempt to tolerate all of the scary things that we did. If the child is unable to understand what I am saying, I reassure the parent that we will try to minimize her child’s discomfort with necessary exams and procedures. If the child looks at me, I may blow a kiss!

Material in this article is adapted from Rosenblatt, A. I., and P. S. Carbone, eds. 2012. Autism Spectrum Disorders: What Every Parent Needs to Know. Elk Grove Village, IL: American Academy of Pediatrics.

Paul S. Carbone, MD, FAAP, is an associate professor of pediatrics at the University of Utah. He is a current member of the Council on Children with Disabilities Autism Subcommittee of the American Academy of Pediatrics.

Alan I. Rosenblatt, MD, FAAP, is a neurodevelopmental pediatrician and teaches general pediatrics at the Ann & Robert H. Lurie Children’s Hospital of Chicago. He served on the Autism Expert Panel of the American Academy of Pediatrics.

Copyright © Autism Asperger’s Digest. 2013. All Rights Reserved. Distribution via print is prohibited without written permission of publisher.

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AADigest: September – October 2013

Columns:

The Way I See It - Teens with ASD Must Learn Both Social and Work Skills to Keep Jobs Temple Grandin, PhD

Perspective - Why Johnny Can’t Be Good Ellen Notbohm, BS

Transition to Adulthood - Opportunities for Community Involvement James Ball, EdD, BCBA-D

Social Success - Social Boundaries Katie Brady, LCSW

Positive Behavior Strategies - What Does Attention Seeking Really Mean? Jed Baker, PhD

Teacher to Teacher - Teacher and Ambassador Oliver, MEd

The Early Years - Family Gatherings Jamie Pacton, MA

Sensory Solutions - Sensory Success in the Classroom Lucy Jane Miller, PhD, OTR and Britt Collins, MS, OTR

Autism Around the World - Japan Tomoko R. Haramaki, MA

Inspire - One Soul at a Time Gayle Nobel

Features:

Partnering with Your Child’s Pediatrician
A partnership built with your child’s pediatrician can offer great benefits to your family. – Paul Carbone, MD, and Alan Rosenblatt, MD

Sensory-Friendly Learning at Home
Make homeschooling (or homework time) more sensory-friendly and enjoyable for your child!- Cara Koscinski, MOT, OTR/L

Developing Positive Character Strengths, Part II
Positive character strengths relevant to individuals with ASD are humor, kindness, gratitude, and grit. – Jemma Grindstaff, PhD

Communicating about Communication
How does communication work when one partner has AS? – Ben and Bobbi Sheahan

Expressive Arts: Learning, Growing, and Expressing
The expressive arts are not merely enrichment; they provide opportunities to develop many life skills. – Joanne Lara, MA, and Keri Bowers

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