by Amy Parham
Autism Asperger’s Digest | January/February 2013

We are in fact a lot like an army. We are united by the love that we have for our children on the spectrum.

Recently I was asked to be the grand marshal for a walk sponsored by the South Carolina Autism Society. Before the walk began they asked me to say a few words to rally the crowd of parents and their children who had come out that sunny spring morning to support a cause that was dear to their hearts. Since being a contestant on NBC’s Biggest Loser, I have had many opportunities to participate in events like this. I have spoken at American Heart Association luncheons and done bikes races with the American Diabetes Association. I have done 5K races for the American Cancer Society, Goodwill Industries, and various other charities and organizations.

Every time I am asked to be involved in events, I feel honored and blessed. However, after you do anything many times it becomes a little routine. To be completely honest with you, this race was just another thing to mark off my to-do list that day.

But I soon realized that this particular morning was going to be glaringly different. As I stepped up to grab the microphone, I paused a moment and looked around into the eyes of the people in front of me. As my gaze passed over these people, I was struck with an unexpected and almost debilitating wave of emotion. Looking into the faces of these moms and dads, grandmothers and grandfathers, teachers and friends, I saw wounded soldiers staring back at me, war-torn faces of people who had fought against the enemy of autism and came back from battle with the scars from the fight. This hit home hard to me because I know that look all too well. I see it in my own reflection in the mirror every day.

I, too, was suddenly and without warning thrown into that war when my son Rhett was diagnosed with autism at age four. We were told he was just a quiet child and that “his brothers must be doing all the talking for him.” We fought to get the proper diagnosis and agonized in that space where you want to know what’s wrong with your child but are terrified to hear that it’s autism. I mourned silently as relatives and friends made statements like “he will grow out of it” when I knew there was no cure.

So that morning I knew that these people “got it.” With one look in their eyes, I knew we were brothers and sisters that had suffered through delays in getting appointments with developmental pediatricians. We all knew what it was like to learn a whole new secret language with terms such as on the spectrum, high-functioning, and early interventionist. We had memorized all the “T’s”—ABT (applied behavioral therapy), AIT (auditory integration therapy), OT (occupational therapy), and PT (physical therapy).

These people in front of me knew what it felt like to be in the middle of the mall when their child decides to have a meltdown. They knew about the dreaded IEP (individualized education plan) meetings. They had experienced the screaming, the flapping, and the other forms of stimming. We had all mourned the loss of the dreams we had for our children when we realized that they may never graduate from college, get married, or in some cases never tell us they love us. We shared a bond that people who aren’t affected by autism in a deeply personal way would never have to grasp. And like soldiers, we would gather that day and share our “war stories.” All of them were different, but we shared that common thread of familiarity that ties us all together.

This day as I looked at my brothers and sisters there, I also realized that we were the survivors. We had come out of the fight stronger. Every great war has not only stories of tragedy but also those of victory: mountains that were climbed and hills that were taken. I heard the phrase repeated often that day, “We were told he would never [fill in the blank], but he is doing it now!” I know from my own experience because I was told that my son would never be able to read phonetically and now he reads everything!

That day I heard stories of therapies that produced amazing results, diets that had helped behaviors, and teachers that went above and beyond the call of duty. As we shared these notes we shared something bigger. Something that would help us have the strength to fight another day. Through those stories and our mutual experiences, we shared hope. Hope that there may be a way our child could do something that we had believed was impossible. Hope that maybe our child’s future wasn’t so bleak.

That day was a special day. I realized that we are not alone. We are in fact a lot like an army. We are united by the love that we have for our children on the spectrum. That love that inspires us to fight and hope—laugh and imagine big dreams for our children’s futures.

When Rhett was diagnosed it was one of the darkest times in my life. I was devastated and embarrassed by his behaviors. I was angry at God, the doctors, and the people in stores who would stare and whisper. But on this day through my tears, I said a little prayer. I thanked God for allowing me to be Rhett’s mom. I was honored to be a part of this chosen few. This group of soldiers—this army of survivors.

BIO
Amy Parham and her husband Phillip were on Season 6 of NBC’s Biggest Loser when America was introduced firsthand to their family, including their son Rhett who has autism.

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James Ball, EdD, BCBA-D
Autism Asperger’s Digest | March/April 2013

Knowing how to make, handle, and save money increases an individual’s quality of life.

Money drives our society, so therefore financial literacy is a vital skill to master for individuals with autism spectrum disorder (ASD). Knowing how to make money, handle it, and save it increases an individual’s quality of life. So financial literacy needs to be a big part of any individual’s to-master list. Many of these skills can be taught during the school-age years and continued into adulthood.

Functional living skills need to be incorporated into the child’s life as soon as possible and financial literacy is one often forgotten. We do money identification for instance, but rarely discuss credit and how to handle money in the real world, let alone teach it and practice it in real-life situations.

Teaching Financial Literacy
How Money Works. This could begin with identifying the coins and bills of the monetary system. Often we can teach this by a token system. A child earns “money” and is able to use it to purchase a desired item from a list. The higher priced items are more valuable to the child, thus getting him to “bank” some money to save for that particular item. This concept can then be generalized to a real environment like a store or fast-food restaurant. Once the child understands the concept of money, you can introduce other financial literacy concepts.

If the individual does not have any interest or cannot grasp the concept of money and how it relates to his needs and wants, then you must make the acquisition of financial literacy skills more functional. For example, if he cannot count money or is unable to calculate change, teaching him how to put a bill in a vending machine and waiting to collect change is a much more functional skill. If he can sequence numbers, but cannot calculate change, teaching him to give the correct bill for a purchase would be a good place to start (i.e., if the cost is $7, have the child give a $10 bill). The faster you can generalize this instruction to a real-life situation, the better.

How to Create a Budget. Making a written or visual plan (using a bar graph or manipulatives) to show the amount of money a child earns and how much he spends is a great way to teach financial literacy. Sitting down with the child and going over the exact amount of money coming in, then deducting the amount going out, will help him better see where his money is going. A great way to start teaching this is to give him an allowance and spending chart, which includes certain things around the house (e.g., food, rent, electric bill, cell phone).

Being concrete as to what a need is versus what is fun or a want is also critical. Use written and visual supports to show the needs and wants (e.g., pictures of needs). Help the individual understand how to prioritize (to distinguish between needs and wants) to reach financial success.

How to Spend Wisely. When teaching an adult, you need to have a discussion about why he is working—to make money because it buys those things he needs and wants. Once you have had this conversation and are comfortable that the adult with ASD understands the relationship of work, income, and needs versus wants, you can start the process of divvying up the money (i.e., categories such as housing, utilities, food, transportation, wants).

Start with setting up a bank account with a debit card attached. Teach the adult how to use an automated teller machine (ATM): how to deposit, withdraw, and determine the account balance. Teach the adult who cannot add or subtract how to use the ATM and how to access the money prior to making a purchase. Then, based on the formation of his budget, encourage him to put the appropriate amount of money away to pay those bills. The remainder can go into the want category.

In basic, concrete terms, discuss major purchases, like a TV or iPad and show him how to save for that item. Have a visual of the object he wants, the amount, and how much has been saved, showing how the amount needed is nearing the goal over time.

How Credit Works. The best way to teach this final part of financial literacy is to put specific rules down for the use of a credit card. To start, it may be used only for emergencies. As time goes on, you can add other reasons to use the card. To begin, get a card with a low credit limit or a prepaid card. This way, you have ample teaching opportunities, if needed, prior to the situation’s getting out of control. It is important to discuss how the bill will be paid. Show the adult what will happen every month; he will receive a bill that must be paid from the money in his budget. If he exceeds the budget, payment may have to come out of his major purchases fund.

Most important, have a double-check system, as most businesses do. When a check is written or cash is paid over a certain amount (e.g., over $1,000), it must be approved first. Make it the rule!

Becoming financially literate is all about teaching and learning. By keeping a close eye on the adult’s finances, you can open the discussion to help him learn these skills. Furthermore, it is crucial to teach these concepts to school children to set the stage for lifelong knowledge and know-how. There’s no doubt that financial literacy can greatly improve everyone’s quality of life.

BIO

James Ball, EdD, BCBA-D, has been working in the field of autism for 20+ years helping children, teens, and adults with ASD. Learn more about Jim’s consulting services company on www.jbautismconsulting.com.

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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.

Stage	Language Examples
1. Communicative use of language gestalts	“Let’s get out of here!”	“Want some more?”
2. Mitigation into:(a) chunks and (b) recombining	(a) “Let’s get + out of here!”“Want + some more?”	(b) “Let’s get some more!”“Want out of here?”
3. Isolation of single words and generation of two-word phrases	“Get…more.”	“Want…out?”
4. Generation of more complex sentences	“I got more.”	“I wanna go out.”

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.

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Robert Brooks, PhD, and Sam Goldstein, PhD
Autism Asperger’s Digest | March/April 2013

If we are to raise children with ASD to be resilient, we must help them develop a healthy attitude toward mistakes and setbacks.

A major focus of our collaboration has been to elaborate upon the concepts of both mindsets and resilience (Brooks and Goldstein 2001, 2004, 2007, 2012; Goldstein and Brooks 2007, 2012). We propose that all people possess a set of assumptions about themselves and others that influence their behavior and the skills they develop. In turn these behaviors and skills affect their assumptions so that a dynamic process is constantly operating. We labeled the set of assumptions a mindset and sought to identify the features of the mindset possessed by hopeful, resilient people.
Our interventions are rooted in an approach that focuses on developing strengths rather than fixing deficits. The shortcomings of a deficit model, especially when working with or raising children and adolescents with autism spectrum disorder (ASD), reside in the multifaceted problems these individuals display. If clinicians and caregivers spend most of their time in a reactive mode, constantly and frantically moving from one problem to the next, it is difficult to have an opportunity to reflect upon and adopt a proactive approach. It is well documented that children with ASD require much more assistance than other youngsters if they are to transition successfully into adult life (Adams 2009; Robinson 2011; Sicile-Kira 2012). Symptom relief, while essential, is not the equivalent of changing long-term outcome.

In our therapeutic work with children with ASD, we expanded upon our earlier writings about a resilient mindset, especially given the specific challenges that these youngsters face. Social impairments have been found to be the strongest predictors of the risk of a child receiving a diagnosis of ASD (for review see Goldstein, Naglieri, and Ozonoff 2008). Children with ASD struggle to develop normal, satisfying, and appropriate social connections in relations with others. They typically lag in social language, or pragmatics, so that a give-and-take discourse with others is difficult to achieve. They misread social cues, failing, for example, to comprehend the messages and jokes of others as well as being far off the mark with their own attempts to communicate.

What Is a Social Resilient Mindset?
Our expansion of the concept of resilient mindset to social resilient mindset with youngsters with ASD is to capture the key developmental problems they experience in the social domain. Though each child’s journey in life is shaped by a variety of factors, including inborn temperament, family style and values, educational experiences, and the broader society or culture in which the child is raised, we have selected eight Guideposts that provide principles and strategies to nurture a social resilient mindset in children and adolescents with ASD.

Each of the Guideposts involves reinforcing skills necessary for the development and maintenance of friendships, a difficult task for children with ASD. These can be reinforced by parents, therapists, teachers, and other professionals. In our new book, Raising Resilient Children with Autism Spectrum Disorders (McGraw-Hill, 2011) we elaborate on these Guideposts with reasoned and reasonable strategies to implement them along with case studies material to illustrate their application. Briefly, the Guideposts are as follows.

Guidepost 1 Teaching and Conveying Empathy. Empathy is the capacity to put oneself inside the shoes of other people and to see the world through their eyes. Empathy involves both perspective-taking and the ability to identify and recognize emotion, skills that typically lag in children with ASD.

Guidepost 2 Using Empathic Communication and Listening Actively. Combined with the first strategy, we
refer to this as empathic communication. It is not just speaking to another person with clarity. It also involves actively listening to others, understanding and validating what they are attempting to say.

Guidepost 3 Accepting Our Children for Who They Are: Conveying Unconditional Love and Setting Realistic Expectations. To truly nurture a social resilient mindset requires that we love our children unconditionally and help them feel appreciated. To accomplish this we must learn to accept children for who they are, not necessarily what we hope or want them to be.

Guidepost 4 Nurturing “Islands of Competence.” While it is crucial to address problems, we have come to recognize that to place the emphasis on analyzing pathology and fixing deficits limits our ability to assist children with ASD and their parents to lead more satisfying, resilient lives. We ask parents to look within themselves as well as within their children to identify such islands and to reinforce and nurture them.

Guidepost 5 Helping Children Learn from Rather Than Feel Defeated by Mistakes. We offer a more in-depth explanation of this Guidepost later in this article.

Guidepost 6 Teaching Children to Solve Problems and Make Sound Decisions. The attitude of resilient youngsters is that mistakes serve as catalysts for problem solving. Such youngsters believe they have control over what transpires in their lives rather than being victims of events. Though teaching problem-solving skills to children with ASD may at times feel like a Herculean task, it represents one of the most important responsibilities we have as caregivers and educators to help children with ASD develop a social resilient mindset.

Guidepost 7 Disciplining in Ways that Promote Self-Discipline and Self-Worth. One of the main responsibilities of parents and educators is to model and teach discipline. The word discipline relates to the word disciple and is best understood as a teaching process.

Guidepost 8 Developing Responsibility, Compassion, and a Social Conscience. We have asserted that there appears to be an inborn need to help others (Brooks and Goldstein 2001). Given the lifelong, positive influence of what we label “contributory activities,” having children help others is a strategy we consistently recommend to parents and teachers of children with ASD.

In this article we will further explore Guidepost 5 as the mindset of a child with ASD about mistakes is critical for him.

Guidepost 5
Resilient children view mistakes as opportunities for learning, while those who lack confidence often perceive mistakes as indications that they are failures. In response to this pessimistic view, they may retreat from challenges, experience feelings of inadequacy, project blame on others, and lose hope for success in the future. Thus, if we are to raise children with ASD to be resilient, we must help them develop a healthy attitude toward mistakes and setbacks. Understanding the following obstacles and principles can help facilitate this task.

Three Obstacles
Given their biological make-up, children with ASD often perceive situations in rigid, black-and-white terms that contribute to their overreacting emotionally and repetitively to setbacks. In addition, they have difficulty considering different options for succeeding at a task that has proved problematic. Consequently, they feel lost when they encounter failure.

Even well-intentioned parents may react to their children’s mistakes in ways that are counterproductive, displaying annoyance and frustration. Intensifying this situation is the fact that many youngsters with ASD interpret any parental correction as criticism. The behavior of these children often invites more correction than behavior of children who are not on the spectrum.

Unrealistic expectations on the part of parents serve as a key obstacle in children with ASD learning to handle mistakes. Parents may believe that when children with ASD display success in one area, they are capable of achieving success in other areas. For example, a child with ASD may memorize math facts or baseball averages but not remember to respond when greeted by another person; since the memory of these children is solid in one domain, parents may unrealistically expect the same skills to work in another area.

Three Principles
Parents must serve as role models for managing mistakes and failures effectively. Our words and actions in response to life’s challenges cannot help but affect our children. If children with ASD witness parents backing away from challenges, offering excuses for mistakes, and becoming frustrated and angry at setbacks, it is not surprising if they show the same behaviors. Children need role models who demonstrate effective coping strategies.

It is important that parents and other caregivers set realistic expectations. In keeping this principle in mind, we must recognize that what is realistic for one child may not be realistic for another child of the same age. Developmental skills and milestones are very different for youngsters with ASD compared with typically developing peers. Setting expectations is often a balancing act. Expectations that are too high will contribute to consistent failure and an ongoing attack on a child’s self-esteem and confidence. However, if expectations are set too low, they will rob children of learning new skills. Low expectations may also communicate the message that adults do not have faith in the child with ASD to have the capacity to master challenges.

Our love for our children with ASD should not be influenced by or contingent on how many mistakes they make. Children become angry and weary if they believe that parental love and acceptance are conditional. Expressions of love must not be lessened in the face of a child with ASD failing at a task. In the absence of unconditional love, it is difficult for children with ASD to truly believe that they can learn from—rather than feel defeated by—mistakes.

Despite well-founded worries about youth with ASD and their future, there is reason to be optimistic about the large body of emerging research defining differences in children with ASD. Parents and educators can effectively target these differences for intervention, thereby successfully modifying adverse behaviors at young ages and helping children develop socially appropriate skills. Understanding the different components of a social resilient mindset can serve to guide all adults raising or working with children and adolescents with ASD to nurture an outlook and skills in these youngsters that will help them navigate with greater success and happiness their journey in life.

BIO

Sam Goldstein, PhD, is an assistant clinical instructor at the University of Utah School of Medicine and clinical director of the Neurology Learning and Behavior Center. Robert Brooks, PhD, is a faculty member of Harvard Medical School. They are co-authors of a dozen books including Raising Resilient Children with Autism Spectrum Disorders (McGraw-Hill, 2011). They can be reached through their websites www.samgoldstein.com and www.drrobertbrooks.com.

References
Adams, L. W. 2009. Parenting on the Autism Spectrum: A Survival Guide. San Diego, CA: Plural Publishing.
Brooks, R., and S. Goldstein. 2001. Raising Resilient Children. New York: McGraw-Hill.
Brooks, R., and S. Goldstein. 2004. The Power of Resilience: Achieving Balance, Confidence, and Personal Strength in Your Life. New York: McGraw-Hill.
Brooks, R., and S. Goldstein. 2007. Raising a Self-Disciplined Child. New York: McGraw-Hill.
Brooks, R., and S. Goldstein. 2011. Raising Resilient Children with Autism Spectrum Disorders. New York: McGraw-Hill.
Goldstein, S., and R. Brooks. 2007. Understanding and Managing Children’s Classroom Behavior: Creating Resilient, Sustainable Classrooms. New York: Wiley.
Goldstein, S., and R. Brooks, eds. 2012. Handbook of Resilience in Children. 2nd edition. New York: Springer.
Goldstein, S., J. Naglieri, and S. Ozonoff, eds. 2008. Assessment of Autism. New York: Guilford Press.
Robinson, R. G. 2011. Autism Solutions: How to Create a Healthy and Meaningful Life for Your Child. Don Mills, Ontario: Harlequin.
Sicile-Kira, C., and J. Sicile-Kira. 2012. A Full Life with Autism: From Learning to Forming Relationships to Achieving Independence. New York: Palgrave Macmillan.

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By Ellen Notbohm
Autism Asperger’s Digest | March/April 2013

Adapted from The Autism Trail Guide: Postcards from the Road Less Traveled by Ellen Notbohm (2007). For more information, visit www.ellennotbohm.com.

“You can’t bounce the bounce if you can’t even pronounce the bounce.”

~Tigger in The Tigger Movie

“And that’s why it frequently all falls apart in middle school,” concluded the special education administrator, speaking to me as both a professional and a parent. While I have two sons, one with attention deficit/hyperactivity disorder (ADHD) and one with autism, he has one son with both, proving once again that you can always find someone with greater challenges than yours. During his time in the administrative position, he had noted that the nurturing culture embraced by most elementary schools tends to disappear in middle school. “Middle school teachers seem to want to treat their students as little adults,” he said, “And of course they are not. This level of expectation only makes things that much harder for the kids on the autism spectrum.”

The expectation of “little adulthood” hits children with autism so much harder because at its core is one of the more enigmatic impairments of autism, Theory of Mind (ToM) skills. ToM skills encompass critical thinking (classification, comparison, application), executive management (attention, planning and memory functions) and social pragmatics (perspective-taking), and they’re missing from the thought processes of most children with autism. The lack of these invisible, intangible, unquantifiable skills can be hugely detrimental to learning. Many, if not most, teachers are not well-versed in how to teach a student who lacks ToM skills, and may not even see it in a child who outwardly appears competent.

Seventh grade was indeed a difficult year for my son Bryce. He not only was riding the white water of normal adolescence, but also squarely confronting his autism for the first time and facing down the limitations it was trying to put on him. At the same time, the curriculum and assignments required an ever-increasing amount of abstract thought. More onerous than the factual aspects of world history or earth science were the confounding ToM requirements of the assignments: comparative perspective, inferential ability, generalization and reclassification skills, and the cognitive and social agility to do it all in prescribed timeframes, sometimes independently, sometimes in small groups, sometimes along with the whole class.

That’s not a strengths-based curriculum for the student with autism, and it certainly wasn’t for Bryce. Lucky it was for us the school’s speech language pathologist, Christine Bemrose, had a deep understanding of the core issues of autism and how they impacted Bryce. Their year together was challenging, but by June we could look back and see the astonishing progress he’d made in developing those skills under her guidance.

“For as many as 80% of children identified with learning disabilities,” Christine told us, “those difficulties are language-based. Students don’t always end up with a speech pathologist even though they may be struggling with reading, writing or even math. All those things that are language-based activities. Struggling with learning language, using it flexibly, understanding the abstract nature of it, being able to hold information in your head, synthesize that information, carry it over to a new setting, pull it forward in an efficient manner, make connections between things—everything kids do in academics is a language-based activity.”

Consider this an absolute for children with autism: Theory of Mind skills can be taught, and they must be taught.

When Bryce latched on to the Winnie the Pooh books and movies at age 7, what tickled him especially was “Hoo-hoo-hoo HOO! That’s what Tiggers do best!” Followed, of course, by Tigger messing up whatever the activity was and deciding that Pooh sticks, climbing trees, eating honey, etc. was not what Tiggers do best. I thought of Tigger’s fumblings as I read through an excellent chart Christine put together for Bryce’s teachers, illustrating “What Bryce does best” and “What challenges Bryce,” including suggestions for addressing those challenges in the classroom and at home. Recognizing our child’s black-and-white core strengths and using them to push into the realm of the gray is what it’s all about. Equally critical is recognizing that those strengths—things our Tiggers do best—can lull us and their teachers into assuming that they are automatically able to extend these skills to a larger context. In fact, they cannot do that at all, until they are taught. To the uneducated, Eeyore tells us, “an A is just three sticks.”

A significant factor in Christine’s effectiveness can be attributed to her devoted efforts to educate the educators, to interact with Bryce’s teachers and with me in a manner that helped us understand those deep-seated ToM issues. I’ve adapted her work here in the hopes that you see your own child or student, and be able to take steps toward helping him conquer these critical skills.

JUST BECAUSE HE CAN follow a schedule

DOESN’T MEAN HE CAN

create a schedule
easily assimilate random changes to that schedule (such as changing an assignment’s due date due to illness or inclement weather)
remember information that changes daily or weekly.

YOU CAN provide visual guidelines that help specify

the task needing to be done
the timeframe in which it must be done
the steps needed to accomplish it.

JUST BECAUSE HE CAN remember concrete facts and details (rote memory)

DOESN’T MEAN HE CAN understand

why those facts are relevant
how those facts may be interrelated
how he can apply facts to a larger or completely different context
how they may suggest further facts (inference).

YOU CAN

explain or demonstrate how facts and details contribute to “the big picture”
provide supporting visuals
provide opportunities to use new facts, concepts or vocabulary in new ways
specifically identify passages containing inferential knowledge
review and check for comprehension of figurative language, nonliteral language.

JUST BECAUSE HE CAN follow clear, concrete directions given directly to him

DOESN’T MEAN HE CAN understand expectations presented to the whole class or group, or that he can follow multistep directions without visual support.

YOU CAN

provide written and verbal prompts for necessary steps and outcomes
check for comprehension at each step in the process.

JUST BECAUSE HE CAN complete work independently

DOESN’T MEAN HE CAN

recognize when work needs revision
work collaboratively with others to complete assignments or tasks.

YOU CAN

provide cue cards or verbal prompts to check, reconsider and revise his work when necessary
provide structure for the activity and clarify each person’s role within a group activity. Team the ASD child only with flexible and supportive group partners.
always check for comprehension.

I’ve heard Tigger described as a poster child for ADHD. It’s true that Theory of Mind skills are not what dear Tigger does best, at least not yet. “I didn’t really bounce Eeyore,” he protests in a grand display of faulty social pragmatics. “I had a cough, and I happened to be behind Eeyore, and I said ‘Grrrr-oppp-ptschschschz.’”

What I think Tigger does best is maintain his zesty worldview, even when the chosen activity turns out to be more difficult or unpleasant than what he bargained for; he is always up for new experiences. This may be the most useful Theory of Mind skill of all, and perhaps it cannot be taught. Perhaps it comes naturally after we diligently teach “all of the above,” and the net result is a child who experiences success and confidence.

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.

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Jennifer Cook O’Toole
Autism Asperger’s Digest | Online Article March 2013

Flip through the geek chic categories on Pinterest, Tumblr, Etsy, and Google, and you’ll see a definite trend: Dr. Who, Twilight, Star Wars, The Hunger Games, The Avengers, Harry Potter—all stories of far from perfect, you-and-me-against-the-world heroes. Misunderstood, marginalized, well-meaning underdogs.

Folks on the spectrum know what it is to feel that the odds are never in our favor. We love losers like Neville Longbottom and Luna Lovegood. We “get” them. Heck, we are them! After all, for those of us on the spectrum, “otherness” isn’t fiction. It’s reality. The way we think, speak, dress, feel, and even move may be a little different. And if it’s not, that’s probably because we’ve learned, through a lot of trials and a lot of errors, how to “pretend to be normal.”

Our deeply felt connection with unlikely heroes makes sense. We’ve been hurt. We want to protect ourselves. To feel safe. Maybe even empowered. But real, humdrum, day-to-day life isn’t soap opera drama or outsider fantasy fiction. In fact, too much protection can do us more damage than good. When we self-identify as the perpetual “other,” we build up walls against real friendship, authentic love, and basic human kindness. We protect ourselves right out of the best things life has to offer.

Evolutionary scientists say animals respond to fear in the way their successful ancestors learned to cope with threats. Generally speaking, mammals will first try to avoid danger, which translates for Aspies as avoiding social situations (parties, dates, job interviews), then comes depression, emotional withdrawal, keeping to ourselves at school or at work, and at home. We may feel that our futures are constrained. And often, we try, as hard as we can, to fly under the radar to be unnoticeable, or to be so perfect and so commendable that no one will criticize, condemn, or chastise us.

If we can’t get away from social rejection, we get aggressive. It’s the old “your best defense is a good offense” plan. What looks like an angry outburst or a zero-to-sixty temper may actually be a protective reflex built upon emotional scars and real insecurities. Heightened memories of past threats will increase the wish to disappear, hide, avoid the conversation, or just flat out quit (flight). Those same memories—of feeling like a failure, unwanted, or hurt—also make us quicker to anger, and with greater intensity. That’s our shield. We are trying to immediately stop what feels like a threat.

This isn’t crazy talk. Our fears are born of repeated exposure to very real threats either to our bodies, our minds, or both. Most Aspies or spectrumites have been bullied (often many times over) or at least ridiculed for our differences. We mess up without realizing it, and then have to deal with the fallout just when we may have thought we’d finally gotten our act together. Without a clear understanding of the why’s or when’s, we negotiate daily social situations that seem random and chaotic, building families, marriages, and incomes upon the relationships we are able to reap in those environments.

It’s easy to see why we’d feel as though we need to keep our guard up. We’re walking through a social minefield with blinders on. Trouble with theory of mind (i.e., reading emotional tones, interpersonal cues, understanding perspectives, and detecting hidden motivations) means that danger feels random, chaotic, and ever-looming.

Traumatized by real experiences, we end up using coping mechanisms that are not in line with present circumstances. We detect threats when none exist, avoiding the unfamiliar to avoid danger, hearing challenge and accusation in the voices of loved ones, and interpreting sincere offers of assistance or kindness as insults and ridicule.

As the saying goes, we are listening to “old tapes playing in our minds” rather than to the present situation. We think we understand others’ intentions, so we are curt or avoid social situations altogether. No one will get the chance, we reason, to disappoint or hurt us. Nor, unfortunately, will they get the chance to delightfully surprise or encourage us.

Why? The truth is that we don’t really know what others will say or do in any given situation. We just think we do. So, we don’t bother to communicate. We assume. We misinterpret. We push them away. And in the process, we cause heartache (for others and for ourselves) that needn’t exist in the first place.

Last week, my son and husband (both Aspies) were playing Legos together. Well, my husband thought they were playing together. Our six-year-old had asked his dad to “play with me.” Dad agreed, heading immediately off in search of Christmas decorations for their Lego castle: bells, lights, that sort of thing. He returned with all sorts of adornments, hanging holly in one place, stringing the bells in another. And the whole while, our little guy sat there, fiddling with a Lego knight and horse, looking as if he would cry.

Gently, I tried to tell my husband that something was amiss. But he didn’t want to hear it. From his perspective, I was interfering, meddling, trying to control things. In other words, my input, though kindly spoken and well-intended, felt like a put-down to him. And he got annoyed. That’s when I used our magic code and said, “Green Shirt.”

OK, brief but important digression. The phrase green shirt came out of a video game my husband used to play. In the game, you act as an American soldier fighting against an urban guerrilla insurgency. Surrounded by enemies who act, dress, and speak just like the good guys, you often cannot tell whom to trust. So, the game can help you out a bit. Occasionally, it will show a red light above a foe to distinguish him from the crowd. Or, it will display a green light above a friend, meaning “Do not shoot! I’m on your side!”

That scenario translates really well to those of us on the spectrum. We need a little help identifying who is, in fact, on our team and is not a threat. Even then, we may need reminders in the moment that those who love (or even genuinely like) us are not out to do us harm. They deserve our attention, our calm, our trust. Green light became green shirt in our all-Aspie house, and a code was born.

I saw my husband bristle when I piped up; he felt under attack, or at least, criticized. That’s hypervigilance. He saw enemy combatant instead of teammate. Now, by saying, “green shirt,” I didn’t make his aggressive feelings evaporate. The code just acted as a sort of reset button to alert him to the intensity of his response and remind him to hear me out with trust. And he did.

I asked our boy why he was upset, based on some body language his dad had missed. It turned out that, as is often the case, neither Aspie was communicating his own mental picture well to the other, which meant that no one ended up happy. Although my husband was running around the house with great love and enthusiasm for decorations to play with the Lego castle, he didn’t realize that our little guy wasn’t actually part of that search.

Our son, however, had envisioned re-enacting a battle from his Lego Kingdoms book; unfortunately, he’d never explained that to his dad. Neither one communicated his ideas to the other, and as a result, Dad felt unappreciated in his efforts and our little guy felt ignored, lonely, and left out. However, once they understood the problem and each other, the kingdom erupted in cheerful Lego craziness.

I get it. It’s very hard to know where people are coming from and to fight the fear that they mean us harm. But if, based on everything you’ve experienced over an extended time, a person makes you feel consistently safe, respects your wishes, and tries to accommodate your feelings, he or she probably deserves a green shirt pass. That doesn’t mean you have to agree with everything he or she says or believes. It means that, in an imagined battle against the rest of the world, this is someone who is on your team. Do not allow past hurts to cloud your present experience or to see an enemy where none exists. Don’t avoid. Don’t fight. Just “press reset” and listen.

The green shirt code has become our family’s version of “check yourself before you wreck yourself.” Without it, my husband would probably have believed that I was acting as the ever-present Parenting Coach, ready to point out and improve upon any of his imperfections. He would have felt resentful and been snappish, not so good for his self-concept, our relationship, or our son. With the code, he felt loved by his wife, valued as a partner, and adored by his child. Much, much better, don’t you think?

Overriding triggered emotional responses isn’t easy. It’s a skill that takes time and lots of uncomfortable but deliberate choices. We’re all still working on it in our house.

Frankly, friends, here’s the bottom line. While drama is great for Hollywood, setting yourself against the world in real life means setting the entire world against you. That’s exhausting and heartbreaking.

Where there is fear, there cannot be trust: one cannot live while the other survives. And without trust, there can be no love, no possibility, no hope. There are, in fact, questions that are not threats. There are critiques that are not insults. There can even be delight, rather than disgust, in difference, laughter in mistakes, and a whole lot of fun in weird. After all, “normal” has already been done. So, stop. Blink. Think. Breathe. At every person, at every situation—look again. Trust me. Let’s just be different and weird and revel in nerdy fabulousness together. Whaddya say, green shirt….

BIO
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 won the coveted 2012 Temple Grandin Award, GRASP’s Distinguished Spectrumite Medal, and was chosen for Dr. Tony Attwood’s Global “Top Aspie Mentors Project.” She was nominated for Disney Teacher of the Year Award and named an “Autism Parent Superstar.” Jennifer has been featured by the NPR, BBC World Service, has keynoted internationally, and appears on major national US news shows as the “go-to gal” on autism/Asperger’s Syndrome. She is the author of three books: Asperkids: An Insider’s Guide to Loving, Understanding and Teaching Children with Asperger Syndrome (Jessica Kingsley Publishers, 2012), The Asperkid’s Secret Book of Social Rules: The Handbook of Not-So-Obvious Social Guidelines for Tweens and Teens with Asperger Syndrome (Jessica Kingsley Publishers, 2013), and The Asperkid’s Launch Pad: Home Design that Empowers Everyday Superheroes (Jessica Kingsley Publishers, 2013).

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By Brian R. King, LCSW

Autism Asperger’s Digest | Online Article April 2013

Seeking the help of others is at the heart of being a member of any community. For many individuals on the spectrum, however, asking for help is seen as an invitation to stand out or to appear weak or incompetent. Why do spectrumites (people with autism spectrum disorder) develop such a negative attitude toward something so essential to human relationships? There are several reasons:

> Learned helplessness. Spectrumites are so used to being helped, rescued, and corrected that they begin to resent it. The excessive helping becomes an indication that the individual isn’t trusted to do it himself.

> Communication issues. It is so difficult to find the words to express the help needed that the individual simply chooses to go it alone and spare himself the frustration of trying to explain to another, who often lacks the patience to help him find the words.

> Learning style. Those on the spectrum tend to disproportionately prefer one learning style to another (visual, auditory, or kinesthetic) whereas the traditional student is more eclectic. A student on the spectrum who is unaware of his learning style won’t know to ask for help that is conducive to his learning style; therefore, he learns to perceive assistance offered in a different style as unhelpful and even more confusing.

> Assumption. The worst culprit of all is the person’s assumption that others don’t need or ask for help and will judge the spectrumite when he asks for it.

Is it a wonder that spectrumites often have to reach the point of complete exasperation before even thinking about asking for help? Here’s the reality. There isn’t a single person on the planet that is good at everything. We need each other to accomplish the goals of life. I have Asperger’s Syndrome, ADHD, dyslexia, dysgraphia, and more. In spite of that I run my own business and have authored four books. What’s my secret? I ask for a lot of help from my wife, friends, and colleagues. I’ve spent decades creating and maintaining a support system that helps me succeed. This is something you need to do whether you’re on the spectrum or not.

I’ll admit that I can be very stubborn at times. However, in the end, the value of allowing others to share in creating my success has made my life richer.

Well-meaning parents and professionals may think asking for help is as simple as raising your hand or asking a question. But asking for help isn’t a single action, it’s actually a multistep process:

1. Recognize that you need help.

There are spectrumites who lack the awareness to realize they need help. With their black-and-white thinking, they’ll categorize things as good or bad, right or wrong. Thinking this way allows little room to conceive that other options exist, including the option of asking for help.

Not knowing how to accomplish a goal with the help of others, spectrumites default to doing the task alone. When they’re not successful, they conclude that it can’t be done.

It’s at this point that I introduce the concept that the task “can be done with help.” If the person wants the result bad enough, asking for and receiving help becomes an acceptable option.

2. Determine the type of help you need.

Help must be asked for in sensory terms to communicate to the helper how to best match the recipient’s learning style, or it won’t be helpful. Questions such as “Can you tell me (auditory)?” “Can you show me (visual)?” and “Can you do it with me once (tactile)?” are examples of sensory-specific questions.

3. Ask the right person.

A spectrumite will often ask everything of the person he is most comfortable with, even when that person repeatedly demonstrates she doesn’t have the necessary knowledge or skills in that area. For example, a child who knows everything about WWII will ask his parent who knows nothing about it to explain the logic behind certain strategies. When the parent doesn’t know the answer, the child becomes angry. The child asked the right question of the wrong person.

It is important to help the child identify the key people and resources needed to help him find the answers he seeks. I’m always leading my three spectrumite children toward learning to find the solutions beyond me, so they get used to working with others.

4. Figure out how to ask for help.

We have more methods than ever for communicating with each other. One could simply walk up to a person, send an email or text, or make a phone call. In addition to the method, the style of your approach matters a lot. I can remember a time when I walked up to someone and began asking a question.

The woman stepped back and said, “Well, good morning to you, too.”

She was telling me that she required a greeting before my asking a question. I collected myself after her surprise response broke my train of thought and gave her the greeting she wanted. She was then happy to answer my question.

Requirements, such as pleasantries and other forms of chitchat, serve a social purpose that eludes those on the spectrum, which is why these conventions are often avoided. Many spectrumites prefer the mediums of email or text to phone calls because of the speed and brevity of the conversation. This greatly reduces the social awkwardness of face-to-face or phone conversations.

In the event that a face-to-face exchange is unavoidable, it is necessary for those on the spectrum to think out and rehearse precisely what they’re going to ask beforehand. I do this often because it ensures I convey exactly what I want and prevents me from becoming tongue-tied by social anxiety.

5. Decide if it’s the right time.

It is possible that the spectrumite may have the right question and the right person, but it isn’t the most convenient time to talk to him. The conversation would go something like this, “Hello, I have something I need some help with. Is now a good time?” If the answer is yes (success!), skip to step 4 and ask for help. If the answer is no, ask when would be a better time and then follow up at that time until you get the help you need.

Asking for help is as much art as science and working proficiently with these five steps requires practice, practice, practice. I highly recommend finding someone with whom to practice these steps. For the spectrumites of the world who find asking for help so challenging, this strategy can be surprisingly effective in asking for—and getting—help when they really need it. I’m getting better at it all the time.

BIO

Brian R. King, LCSW, is a Relationship Strategy and Parent Coach who trains parents and educators to use innovative communication strategies to connect more effectively with their children/students on the autism spectrum.

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May June 2013

AADigest: May – June 2013

Columns:

The Way I See It – Portfolios Can Open Job and College Opportunities Temple Grandin, PhD

Perspective - “I Choose to Be Optimistic” Ellen Notbohm, BS, and Bryce Notbohm

Sensory Solutions - Joie de Vivre at Home Lucy Jane Miller, PhD, OTR and Britt Collins, MS, OTR

Transition to Adulthood - Special Interests James Ball, EdD, BCBA-D

Social Success - Teaching about Death and Grieving Katie Brady, LCSW

The Early Years - Hello, World! Jamie Pacton, MA

Positive Behavior Strategies - Dealing with Delays and Disappointments Jed Baker, PhD

Teacher to Teacher - A Planned Approach to Teaching Social Skills Margaret Oliver, MEd

Autism Around the World - India Merry Barua, MA

Features:

On Communication and Passing for Normal
Simple, nonverbal communication makes a huge difference for individuals with ASD. – Carolyn Ogburn, MLA, and Jade

Parents and the School System: We’re All on the Same Team
Working with the schools was a key to my daughter’s growth process. – Julie Clark

Passing the Advocate Torch to Your Child
A parent’s role switches from advocate to advisor when a child transitions to college. – Ann Palmer

True Inclusion through Music
There are many ways to meaningfully include a child with ASD in the music curriculum. – Stephen Shore, EdD

Autism Moms Who Rock!
Nicole Schumacher, Jess Wilson, Erin O’Loughlin, and Patti Moore are all awesome autism moms we want you to know about! - Jamie Pacton, MA

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By Tony Attwood, PhD

Autism Asperger’s Digest | July/August 2012

Why Are Girls Rarely Diagnosed with AS?

Girls who have Asperger’s Syndrome (AS) are primarily different—not regarding the core characteristics of autism spectrum disorder (ASD) but rather in their reaction to being different. Girls often use constructive coping and adjustment strategies to effectively camouflage their confusion in social situations and may achieve superficial social success by imitating others or avoiding engagement in interpersonal situations. A girl with AS can become an avid observer of other children and intellectually determine what to do in social situations: learning to imitate other girls, adopting an alternative persona, and acting as someone who can succeed in social situations (in effect becoming a social chameleon). On the other hand, some girls escape into a world of imagination. They constructively avoid social interactions with other children, choosing instead to engage in creative solitary play, read fiction, or spend time with animals.

These coping and camouflaging mechanisms may mask the characteristics of AS for some time, such that the girl slips through the diagnostic net during the elementary school years. However, there is a psychological cost that may become apparent only in adolescence. It is emotionally exhausting to be constantly observing and analyzing social behavior, trying not to make a social error; adopting an alternative persona can lead to confusion with self-identity and low self-esteem. The stress, strain, and exhaustion of intellectually analyzing social situations and acting normal but being rejected, bullied, and teased can result in the development of depression, an anxiety disorder, eating disorder, or borderline personality disorder. The clinician diagnosing or treating these secondary mood or personality disorders can then identify the characteristics of AS when exploring the developmental history of the girl. Psychologists and psychiatrists therefore need a paradigm shift in their recognition of the female presentation of AS to ensure earlier diagnosis and access to effective understanding and support for girls with AS.

Signs of AS in Girls

In the preschool years the first signs of AS in girls can be intense emotions, especially distress, and an inability to be comforted by affection. Another sign is intense despair not alleviated by distraction or conversation. There can be aspects of sensory sensitivity, especially tactile and auditory sensitivity, resistance to change, and unusual characteristics in language development. While speech may not be delayed, the linguistic profile of a girl with AS can include problems with pragmatic aspects of language, the art of conversation, and being pedantic.

Parents notice that their daughter may not identify or want to play cooperatively with her female peers. She may consider that the play of other girls is beneath her—boring and inexplicable—and prefer to play alone so that she can do things her own way. Her interests can be different from those of other girls, not necessarily of focus but of intensity and quality. There may be a determination to organize toys rather than share them and not play with toys in conventional ways. For example, she may collect over 50 Barbie dolls yet choose not to enact with her neighborhood friends “Barbie getting married” but instead arrange the dolls in particular configurations. She may even use her dolls to re-enact scenes from school to try to decipher the codes of social conduct experienced during the day. She may prefer nongender specific toys such as Lego or playing with toys associated with boys, such as construction sets and vehicles.

The girl with AS may not be interested in the latest craze for girls her age to be cool and popular. She may also be averse to the concept of femininity, choosing not to wear the latest fashions, fancy or frilly clothing, or clothing with bright colors or complex patterns. Her preference may be for practical, comfortable clothes with many pockets.

While boys with AS may fixate on facts (and some girls with AS can also have an encyclopedic knowledge of specific topics), many girls have an intense interest in reading (and some are hyperlexic, exhibiting a precocious ability to read). They may develop an amazing vocabulary and escape into fiction, enjoy a fantasy world, talk to imaginary friends, and write fiction at an early age. Another escape for girls with AS is the exciting world of nature as many have an intuitive understanding of animals. Animals are safe: they are loyal, enthusiastic, and appreciative friends who never tease or reject.

Diagnostic Characteristics of AS in Girls

> not motivated to play with female peers

> imitate peers to camouflage social confusion

> escape into a world of fiction or nature

> not interested in the typical play activities of female peers

Relationships

If a girl with AS does have a friendship, it is likely to be quite intense and with one other girl, who may provide guidance for her in social situations—an “unpaid paraprofessional” in the classroom. In return the girl with AS is a loyal, helpful friend rarely interested in the unfriendly behavior of her peers. Unfortunately the girl with AS can be vulnerable to friendship predators who take advantage of her naivety, social immaturity, and desperation for a friend.

Since it is inevitable that there will be times when she has to engage with other children, the girl with AS may well prefer to play with boys, whose play is more constructive and adventurous rather than emotional and conversational. Many girls who have AS have described to psychologists and in autobiographies how they sometimes think they have a male rather than a female brain, having a greater understanding and appreciation of the interests, thinking, and humor of boys. The girl may be described as a tomboy, eager to join in the activities and conversations of boys rather than that of girls, and they develop talents in school subjects that are predominantly male dominated, such as mathematics and science.

The adolescent girl with AS may not follow society’s expectations of femininity; for example, she may prefer to wear practical, comfortable, somewhat masculine clothing rather than dressing in a fashionable or feminine way. She may also have an aversion for the tactile and sensory aspects of makeup and perfume.

During their adolescence some girls with AS are known at school for their good behavior. A strategy often used is to be extremely well behaved and compliant in class so as not to be noticed or recognized as different by the teacher.

Adolescent girls with AS are often late to develop romantic relationships, having an almost puritanical attitude toward intimacy. Their first intimate experiences can be several years later than peers. There is an alternative trajectory: adolescent girls with AS can develop low self-esteem due to bullying and teasing by peers, and rather than follow social and moral conventions decide to actively contradict them, becoming vulnerable at a relatively early age to relationships and even to sexual predation. They may not have the intuitive ability to identify disreputable characters, tend to set their relationship expectations very low, and often experience multiple abusive relationships.

Social Mistakes

When a social mistake is recognized by boys with AS, they are likely to become agitated and disruptive; girls with AS, in contrast, are more likely to apologize and appease when making a social error. Peers and adults may then forgive and forget without realizing that a pattern of social errors is emerging. However, the girl with AS increasingly recognizes her own social confusion and frequent faux pas. She may react by trying to stay on the periphery of social situations (to not be noticed in a group) so that others remain unaware of her social confusion. She may develop a pathological fear of making a social mistake, and intense performance anxiety in social situations with peers can lead to selective mutism, an inability to speak when talking is expected.

A girl with AS may suffer her social confusion in silence and isolation on the playground yet be a very different person at home. The “mask” is removed, and she may use passive-aggressive behavior to control her family and social experiences—the opposite of the cooperative and compliant child at school. The confusion, tension, and suppressed emotions that occurred during the school day are released with some ferocity, such that she has almost two personalities: the meek school girl and the defiant, argumentative, and emotionally volatile daughter at home.

Coping Mechanisms for Girls with AS

Imitation. Some girls with AS adapt to being different by engaging in imitation. The girl may identify someone who is socially successful and popular, either a peer or a character in a soap opera, and adopt that person’s persona by mimicking speech patterns, phrases, body language, and even clothing and interests. She becomes someone else—someone who would be accepted and not classified as different. She learns how to act in specific situations, a strategy so successful that people may not be aware that the social abilities were a performance achieved by intellect and imitation rather than intuition and inspiration.

Girls who have AS can be like chameleons, changing personas according to the situation, with no one knowing the genuine person. Often the girl believes that the real person must remain secret because she fears that person is defective and must never be revealed. However, this coping strategy leaves her exhausted, and like Cinderella at the ball at midnight, she cannot keep up the social charade indefinitely. When she returns home from school, she cannot tolerate any more social experiences—even with family members.

Imagination. Some girls with AS may not seek integration but instead escape into imagination. The girl might feel that if she cannot be successful with her peers, she can try to find an alternative world where she is valued and appreciated. She may identify with a fictional character such as Hermione Granger of the Harry Potter series, who faces adversity but has special powers and friends. If she feels lonely, then talking to imaginary friends can provide companionship, support, and comfort. Alternatively she may develop an interest in ancient civilizations to find an old world where she can feel at home. Or she might acquire a fascination with another country, such as Japan, where she might be accepted and among people of like mind. She may develop an intense interest in science fiction or in the fantasy worlds of fairies or mythology. Many typical children occasionally enjoy escaping into imagination, but for the girl with AS, the reasons are qualitatively different. This is not evidence of the potential to develop a psychosis but rather the fantasy world becomes a constructive means of avoiding (not distorting) reality and experiencing a relatively safe, successful, and alternative social life.

We have only recently discovered that there are many more girls with AS than we first thought. We are gradually finding them earlier, but what we need to discover next is how to modify our existing programs for children and adolescents with AS to accommodate the adaptations used by girls and improve their social experiences and abilities with female peers. For example, we can use the constructive adaptation of imitation in drama classes with a curriculum specifically designed for girls with AS. At our Minds and Hearts Clinic (www.mindsandhearts.net) in Brisbane, Australia, we have friendship and emotion management groups exclusively for girls. I know of several colleagues who are specializing in the diagnosis and treatment of girls and women with AS in Australia and the US. We now have gender-specific resources on the profile and needs of girls and women with AS (see Resources below) and presentations by clinicians focusing on the abilities and needs of girls and women. While girls with AS may have different ways of coping particular to their gender, we are finding additional ways to diagnose them earlier and help them to cope so that they can develop their full potential.

Resources

Attwood, T. 2011. Asperger’s, Autism, and Girls DVD: Understanding and Appreciating the Female Perspective. Arlington, TX: Future Horizons.

Attwood, T., T. Grandin, C. Faherty, T. Bolick, L. Iland, R. Snyder, S. Wagner, M. Wrobel, and J. Myers. 2006. Asperger’s and Girls. Arlington, TX: Future Horizons.

Clark, J. 2010. Asperger’s in Pink: Pearls of Wisdom from Inside the Bubble of Raising a Child with Asperger’s. Arlington, TX: Future Horizons.

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 US to speak at a series of Future Horizons conferences.

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Rainbows

By Katy Stokes

My friend Megan goes to the same church as I do. Every Thursday night, from September to June, I have dinner with Megan and her mom. It’s a high point of my week; when I’m with them, I feel blessed and loved and understood. Megan is five years old and she has autism.

We met when Megan was two and her mom would bring her to a store where I worked. In those first days, Megan was in a stroller and couldn’t walk on her own. She had no verbal skills and would almost never make eye contact. She was in her own world and had very few bridges to let others in.

Megan and I have come a long way since then. We now see each other at church instead of the mall and Megan walks and talks and makes connections with lots of people. She still has trouble making eye contact and needs a reminder to use her words, but from those first days of our friendship until now—she is a different child.

Along this path we’ve walked together I have been so blessed by this little girl who is truly a friend. Megan has taught me the truth of unexpected, undeserved, and truly unconditional love. Not by how I have come to love her, but by how she has loved me.

In the beginning and still in many ways to this day, Megan thinks highly of only three people—her mom, her first teacher, and me. For no reason I can surmise, Megan took it upon herself to love me. And no one loves as an autistic child loves. With Megan I am invited into a new world, a world that exists inside and around and throughout this mundane world that everyone else sees.

In this world. there are mysteries around every corner. In this world, green is a magic and wonderful and most beautiful color and it should adorn every surface we can possibly touch. In this world. there should always be frosting and no cake. In this world, chocolate is made out of moon sand and a broken light bulb is as dire and distressing as a broken heart.

With Megan I eat tacos from the inside out and bananas from the bottom up. And I watercolor just to color water.

Megan has given me tools I never knew I needed. I’ve learned to embrace my life in a way I didn’t even imagine before her and couldn’t do without her. Through my friendship with Megan and her mom, I have met other children with autism. And I have begun to open my eyes to the beauty of God’s creation. A beauty that makes itself known in tubs full of lima beans and rice, and in purple shaving cream.

Today I sat in a circle with seven of these children—seven delightful new friends—and watched them making music with colored bells. After the last celestial chorus, a tiny voice reached up from next to me and whispered, “…that sound was a rainbow.”

It was the best secret I’ve ever been told.

BIO

Katy Stokes is a young adult living in Midland, Michigan, where she coordinates music and contemporary worship at First United Methodist Church. She is proud to be part of a church that truly welcomes all children and provides for their needs. Katy welcomes comments/questions through her blog at http://girlsguidetofaith.blogspot.com/.

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Robert Brooks, PhD, and Sam Goldstein, PhD
Autism Asperger’s Digest | March/April 2013

If we are to raise children with ASD to be resilient, we must help them develop a healthy attitude toward mistakes and setbacks.

Guidepost 5 Helping Children Learn from Rather Than Feel Defeated by Mistakes. We offer a more in-depth explanation of this Guidepost later in this article.

In this article we will further explore Guidepost 5 as the mindset of a child with ASD about mistakes is critical for him.

BIO

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by Temple Grandin, PhD
Autism Asperger’s Digest | May/June 2002

Many parents share with me their desire to introduce or educate their child with autism or Asperger’s in the religion practiced by the rest of their family. Some wonder if their child is capable of understanding the concept of God (or a higher power), of being spiritual, or even understanding the basic messages of the Bible or other religious texts.

I have learned, over the years, that there is a whole upper layer of abstract thought mixed with emotion that I do not have. Thoughts and emotions are separated in my mind; they don’t intermingle and affect one another. Thinking is concrete, it happens in pictures in my mind. Therefore, for me, inspirational matters had no meaning, except for the very concrete aspects of them that were taught to me.

I had a proper religious upbringing, though. My family attended the Episcopalian church every Sunday. These weekly outings held little value to me, nor was I interested in what went on. Scratchy petticoats that I had to wear to church were awful; in fact, the worst thing about church was the Sunday best clothes. Sunday school was boring to me and I usually spent the entire class filling in the O’s and P’s in the church program.

Concrete teachings were what I understood. For instance, our Christmas service made a lasting impression on me that I carry to this day. Each Christmas, every child in the congregation had to take one of their good toys and give it to a poor child. One year, I offered my yo-yo, and mother told me that I had to give a better present. At the Christmas service, the minister stood next to the manger, full of donated toys, and said, “It is better to give than to receive.” This kind of concrete learning I understood.

The autistic/Asperger’s mind tends to dwell in negatives; this is something parents and professionals should be aware of and find ways to counteract. It is beneficial for a young child to be schooled with positive teachings. One way to do this is through religious training. Helping a child understand what to do in concrete ways, demonstrating to him or her actions that are giving and positive and helpful to others, can counterbalance this tendency toward negative thinking. If a child asks about something negative like stoning as it’s mentioned in the Bible, I would recommend parents tell the child that in modern times, people no longer do that. Keep it concrete and simple.

A nice, positive approach for a Christian upbringing would be to give a child one of the “WWJD (What Would Jesus Do?)” necklaces or key chains. Then teach the child concrete examples of what Jesus did, or would do, in various situations. For instance, Jesus would not cheat in games. He would not lie, or steal another child’s toys. When I was little, I stole a toy fire engine from another child and mother made me give it back. Moral upbringing must be concrete. A good person is considerate of others. One example I remember from my childhood was being told, by a very sleepy mother, that asking her to open a stuck glue bottle while she was sleeping was not being considerate. Fair play and good sportsmanship are important to teach. Jesus would play fairly and would not be a poor loser. He would not scream and rant if he lost a game. It is unfortunate that in our society today, so many sports heroes behave badly on TV and there are no consequences for their actions. It teaches a wrong moral lesson for a child with autism or Asperger’s (or any child) to see a famous basketball player not being punished for kicking a TV cameraman. If a child views things like this, it is important that a parent tell the child that Jesus would never do that.

Teach your child love and kindness in a concrete manner, with very specific examples. For instance, an example of kindness would be bringing flowers to an old lady in a nursing home. There are hundreds of ways parents can share the real essence of their faith with their child with autism or Asperger’s, through daily demonstrations of the goodness that is at the foundation of their religion. This is more important, and will help the child in his or her future more than will learning to recite passages of text, or trying to teach him or her higher level concepts that the child will have difficulty understanding.

BIO

Temple Grandin, PhD, is an internationally respected specialist in designing livestock handling systems. She is the most noted high-functioning person with autism in the world today. Learn more about Temple at http://www.templegrandin.com/.

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Autism Asperger’s Digest | May/June 2013

With today’s smartphones, it is really easy for the individual with ASD, parents, and teachers to carry a portfolio.

Individuals with autism spectrum disorder (ASD) need to get creative and find ways to discover employment or educational opportunities without going through the traditional front-door route of interviews or entrance exams. I never sold a single design job in my cattle equipment design business by doing an interview; I sold jobs by showing a portfolio of my work to the managers of packing plants and feedlots. I learned early in my career that if I showed drawings and photos of my work to the right person, I could get a job.

When I was first starting out, everybody thought I was a weird nerd, but I got respect when I showed off my drawings. I got into the Swift & Company meat plant in the early 1970s because I met a lady who liked the shirt I had embroidered by hand. She turned out to be the wife of the plant’s insurance agent. I was wearing my portfolio and I did not realize it! You never know where you may meet the person who can open the door for you.

Put Your Portfolio on Your Phone

With today’s smartphones, it is really easy for the individual with ASD, parents, and teachers to carry a portfolio. The portfolio can contain pictures of art, drawings, computer programming, samples of creative writing, mathematics, and many other things.

In many situations, there is a backdoor but many people fail to see it. One secret is networking with the right person. That person could be a retired engineer, a lady in the choir, or the man in line at the supermarket checkout aisle. This is why your portfolio must always be with you. Countless times I have had young people on the spectrum tell me that they have been turned away at the “front door.” I have talked to many talented individuals, but most of them failed to have their portfolio with them, or their portfolio was messy with poor work mixed in with their good work.

Technology Is a Backdoor

The secret is to show either your own work or your child’s work to the right person. Today’s social networks such as Facebook and LinkedIn make it even easier to find the person who can open the backdoor and circumvent the front-door interview or admissions process. Wikipedia has a list of social networking websites. Use the keywords social networking websites to locate appropriate sites.

Access Higher Education

Kristine Barnett, a mother of a young boy with autism, found that her son was going nowhere in a special education classroom. He was bored and exhibited challenging behaviors. She started taking him to a local observatory where he could look through a telescope and listen to fascinating lectures. She bought him advanced books on astronomy, and he learned algebra in elementary school. Kristine recognized the need to keep Jake in a regular elementary school class so he could learn social skills. To prevent boredom, he was allowed to read his higher-level math books when the other children were doing arithmetic. When Jake was eight, Kristine called an astronomy professor at the local university and asked if Jake could sit in on a lecture. Jake impressed the professor with his knowledge, and other professors became interested in him. Jake quickly advanced through college math and physics classes. Jake’s story is an excellent example of getting in the backdoor.

Make It Easy for Others to Help

Every week I receive numerous inquiries from people on the spectrum, parents, and teachers who are begging for help. The problem is that many of them make it difficult for me to reach them. I get letters where the only contact information is on the envelope, and I cannot read it. I get emails that do not have phone numbers and postal addresses. You must include complete information if you want to get through to a busy person. You need to make it easy to contact you. Correspondence is often answered on weekends by busy people so give your cell phone number. Due to viruses, many people will not open a strange email attachment, so you need to establish contact via the phone or email first.

After seeing a person’s strong portfolio, a top professor in math, art, physics, or creative writing who believes in that student will find a way to get him into the university even though that student may have failed in other academic areas. Individuals have been accepted into good college programs because they showed their portfolio to the right professor.

BIO

Resource

Barnett, Kristine. 2013. The Spark: A Mother’s Story of Nurturing Genius. New York: Random House.

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by Jamie Pacton, MA
Autism Asperger’s Digest | January/February 2013

John Elder Robison is a man of many talents, including being a caring parent to his son, Cubby!

In the autism community, “free-range Aspergian” John Elder Robison is known for many things: he’s a motivational speaker who got an Asperger’s Syndrome (AS) diagnosis at 40; he’s a former juvenile delinquent who survived a deeply troubled childhood; and he’s a NY Times best-selling writer, a luxury auto repair genius, a toy maker, and that guy who did sound for the superstar group KISS (yep, he’s the one who designed and built Ace Frehley’s guitars that caught on fire and shot rockets).

John’s rock ’n’ roll days are long over, but he still travels a lot for events to promote his many books about living with AS. When he came to do a book event in my neighborhood in Milwaukee, I wanted to know a bit about all these things, but I was especially interested to learn more about another one of his roles: Cubby’s dad.

John’s latest book will soon hit the shelves! It’s called Raising Cubby: A Father and Son’s Adventures with Asperger’s, Trains, Tractors, and High Explosives (Crown, March 2013), and it is full of stories about raising his Aspergian son Jack Robison (http://johnrobison.com/jack-robison.php), whom John has always simply called “Cubby.”

“This book tells the story of my kid from the day I purchased him at the kid store until today. I took my kid places that my life experience tells me most young children don’t go. By the time Cubby was 15, he had stood at the controls of navy frigates, Coast Guard cutters, and railway locomotives. I also tell you all about how my kid got interested in chemistry and explosives and was raided by the ATF [the Bureau of Alcohol, Tobacco, and Firearms]. A local bureaucrat … charged my son—who was a minor at the time—with terrorism because he liked to make things explode in his mom’s garage.”

Cubby received his AS diagnosis at 16, right around the time of the trial. John noted that AS wasn’t a part of the not-guilty verdict.

“In the end, we beat them fair and square. Asperger’s didn’t have anything to do with the trial. We wanted to win the case because it was a ridiculous charge, not for any other reason.”

When I asked John about his challenges as a parent with AS raising a child on the spectrum, he brought up an important point.

“How would I know what my biggest challenges were? How would I know what my challenges have been compared to any other parent’s challenges? People ask me such things all the time, but there’s a fundamental un-answerability to those kinds of questions. My kid’s probably doing just as well as a good many kids his age. I suppose to answer that question you could read the book and compare to your own life and think about things I describe and ask yourself: are these things related to autism or just parenting?”

John did have a lot to say about the writing of his books and his future writing projects. He admitted that publishing books is tough and he sympathizes with the many people out there who are trying to write for publication.

“Initially, I was not interested in writing books at all. I wrote articles for car magazines. If my brother [memoirist Augusten Burroughs] had not written Running with Scissors, I would have never admitted to any of the things in Look Me in the Eye because I would have been ashamed to do so. It was the acceptance of my brother’s stories that encouraged me.”

Once he felt comfortable enough to write his stories, John quickly found an agent through his brother’s connections. “The biggest problems in the publishing world are getting an agent to read your book, getting editors to read the book, and then getting people to buy it. I’m a very logical person and publishing is a game of odds. If I didn’t know people and thought I had no chance of getting published, I wouldn’t waste my time on a 1 in a 10,000 chance.”

His advice for others on the spectrum to get published was straightforward (as is all of his conversation): “If you wanted to write a book about your life, like I did, then you’re no different than anyone else. Autism doesn’t change how you’d approach that. The first thing to confront is this: are you a person who’s willing to engage in the lottery of publishing in hopes that an agent will read your work? Then, think about if you can talk to the media and make public appearances. If you are not comfortable with doing these things, you need to think hard about if you want to publish.”

Having AS actually helps John be successful as a public speaker and autism spectrum disorder (ASD) advocate. “I don’t get nervous when speaking to 10 or 10,000 people. I’ve never felt anything about the size of crowds. I’ve learned that the overwhelming majority of people are nice to me and people are generally respectful because they don’t know me as someone who just goes and attacks other people.”

John’s writing process varies. When he is feeling creative, he will write thousands of words in a day. In fact, his next two books are already in the works.

“After Raising Cubby, the next book is about TMS [Transcranial Magnetic Stimulation] and the efforts of neuroscientists to alter human intelligence in an effort to remediate disability. The fifth book will be a how-to book for parenting in the same way that be different is a companion book to Look Me in the Eye.”

Although his books are known for honesty and helpful how-to strategies for living with ASD, not everything is roses for John. In an especially poignant moment in our conversation, he shared some of the very real struggles of living with ASD.

“All too often we [people on the spectrum] are able to receive negative messages, but not able to internalize positive messages, so we’re often in a low-level depression. All the praise that people give me doesn’t have the impact people want it to have on me. You know, as much as I realize that this stuff that I’ve done has been beneficial, I still think that if I could have been an average, happy, popular little boy, I would have rather been that. Because being smart and creative and expressing all these things—it may be helpful to others but I don’t know really what it’s done for me.”

Even though this sort of thinking is a reality in John’s life, he still ended our conversation on a positive note. “It’s important to remember that many of us emerge from disability to certain extents. Although the difference is permanent, the disability is not. I’ve learned that being different is ok, and that’s something for every parent to keep in mind. It’s difficult for you to know your own kid’s potential or for any of us to know our potential.”

Although I took many things away from my conversation with John, this insight is what stuck with me long after we parted. Yes, my son with ASD is different, but he’s not broken. And, like John, the introverted sound guy for KISS who never thought he’d write or sell books or become an inspiration to millions of people, my spectrum child is capable of so much more than I can imagine.

Jamie Pacton, MA, is a writer, professor, and mother to two young boys (one who is on the spectrum). Visit her website at www.jamiepacton.com.

Watch for an article by Dr. Temple Grandin about TMS and John Elder Robison in the March/April 2013 issue of Autism Asperger’s Digest! You can also read a great AADigest article by Robison at autismdigest.com/the-path-tofitting-in/

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Autism Asperger’s Digest | May/June 2013

I am convinced that working with the schools was a key to my daughter’s growth process.

Home-Team Advantage

Imagine watching a baseball game. The players for the away team are warming up on the field. The home team smirks as they are fully aware of the home team advantage they possess. They know the weakness of the field, but they also know its strength. It’s with this confidence they relax on the bench, waiting for the game to begin.

Contrast this to the mindset of the visiting team, who can rely only on stories of previous games here as well as a furtive few moments stretching and catching before the official start of play. General rules of baseball apply, but the nuances that change with each and every away game underscore the meaning of playing defense. Yes, the visiting team is at a disadvantage—but nothing they can’t overcome with a little strategy!

All too often, the previous scenario reminds me of the school-home relationship. For starters, we perpetually consider ourselves on separate “teams.” What the parents want versus what the school wants. Parents will always be the visiting team, as time at any given school is limited. The school, aka the home team, is always at an advantage as they fully understand the special needs process and what is needed to succeed in their environment. For parents, the school is often rather intimidating as we rely on stories of fellow parents to paint a picture of what we can expect when our children enter those hallowed doors. Likewise, years of experiences evolve into patterns, which the school recognizes, making it easy for them to default to assuming how each family’s experiences will unfold.

Truth is both often approach those first few days and months all wrong. Too many parents shift into full defense mode (some would say offense), while the school goes by its weathered playbook. Just as in the baseball game scenario, each views the other as opponents when we really need to suit up for the same side—the side the child is on.

Competition or Cooperation?

Several years ago, during the middle of first grade, our daughter Kristina was diagnosed with autism spectrum disorder (ASD). We’ve learned a lot along the way, and our entire family has been stretched in ways we never thought possible. School, to be honest, has been one of the more difficult pieces of our life’s puzzle to sort out and master. But now that Kristina is eyeing her final year of high school, we are reaping the dividends of all the meetings, journaling, advocating, and hard work. Choosing to see the school and us (the parents) as teammates instead of opponents really works!

It’s that easy.

One aphorism I live by is that nobody is 100 percent perfect nor is anyone 100 percent faulty. Unfortunately, too many parents fall into the trap of envisioning the school making choices that will benefit the school (or school budgets) over the child, which puts them on the defensive from Day One. On the flip side, I’ve personally heard educators talk about cases where they’ve pegged both student and family solely with their first impressions. Any educator acting as Madame Crystal Ball can all but doom the student’s path into adulthood. With a change of perspective, both sides can work together in harmony, with the child winning in the process.

Communication + Consistency = Cooperation

So, let’s get down to business. How do we ensure successful school-home cooperation? One of the main keys to success or failure I’ve observed over the years is the quality of communication, coupled with making assumptions. For anyone with a high school student, you know what I mean! Does this sound familiar?
“Hey mom, I forgot to tell you that the gazillion dollar deposit for the field trip is due, like in two hours.”
Mom contorts face, adding to the wrinkle contingent on her forehead.
“How long have you known about this?”
“I dunno, like a month? Just write a check, okay? What’s the big deal?”
In this scenario, it’s easy to see how delayed communication adds undue stress to a situation, while the assumption made on the part of the teen that mom is a walking bank machine only adds to the drama.

Communication is, indeed, key to success—or disappointment.

With school, we’ve seen everything from paperwork never coming home to paperwork due in some obscenely short amount of time. We’ve even missed schoolwide events as they were never communicated to us. Sometimes, the culprit is our child; other times, the school. But inadequate communication becomes a bigger issue when it comes to understanding how your spectrum child is functioning in the school setting.

Each year (or semester), we plan a meeting with the education team and set a plan in place. Typically, we introduce Asperger’s Syndrome (AS) as it relates to our daughter and gauge the team’s understanding of it. We ask the teachers which method of communication works best for them (e.g., email, phone calls, note home), and respect it. We also ask to be notified in a timely fashion if any problems arise. (There is nothing worse than learning your child is having difficulties weeks to months after problems start.) We also ask them for their thoughts and whether they have any questions or advice. We demonstrate that we are genuinely willing to work together for our child while recognizing that these professionals have many other students in their classrooms.

This includes asking what we can do at home to support their efforts as well as mentioning what already works, thereby creating consistency between school and home. These particulars change over the years as kids evolve from younger grades to high school.

Let’s break it down into easy-to-remember points:

Teamwork Tips for Parents

Do not assume the school staff understands (or does not understand) ASD. Rather, choose to focus on how ASD affects your child. No need for a dissertation on the entire spectrum! The school needs to know how your child’s ASD will affect him in the school setting.
Discuss and agree on expected frequency as well as method of communication with the school staff, determining the “go-to person” for most questions and concerns.
Discuss techniques that work well for your child (e.g., rewards, consequences) as well as ones that are ineffective.
Demonstrate a willingness to work with school staff and follow through with any commitments, attending meetings promptly.
Be aware that corporal punishment (i.e., paddling) is legal in some US states. If it is legal in your area, be sure to discuss it with school staff.
Remember to thank the school staff for working together. It’s so easy to criticize, isn’t it? A smile and a thank-you go a long way. A special note every now and then can also help. Keep positive—and optimistic!
Take notes of every meeting and always come prepared. However, resist the urge to craft a scroll-length list of requests and observations. Keep it simple yet focused.
Keep an open mind, choosing to listen to what school staff have to say.

Teamwork Tips for Teachers

Listen to the parents and treat each family as unique, resisting the urge to assume their situation will mimic that of others.
Resist the urge to compare girls on the spectrum with their male counterparts. Markers of AS, in particular, can be exhibited differently in girls.
If you have questions about a child’s behavior or ASD in general, don’t hesitate to ask the parent. Most parents have a large working knowledge of ASD and are happy to educate others to help them better understand their child.
Practice active listening skills, really listening when the parents are sharing their concerns and insights—not just thinking about what would be best to say next.
Recognize that parents are working under a tremendous amount of stress. Many come to meetings anxious and not knowing what to expect. A kind smile goes a long way!

Teamwork Tip for All

Remember whose team you are on—the child’s!

Can you picture how strong we become when we work together? Can you image how far your student will go—and grow—being a part of such a team? Take Kristina. When she started elementary school, we weren’t sure she’d be a candidate for college, as she had so many obstacles to overcome. Now, not only is attending college a viable possibility, but living on campus—out of state at a highly competitive school—is within her grasp. It’s too early to say where she will end up, but I am convinced that working with the schools was a key to her growth process. Not everyone will achieve this level of independence and autonomy, but to classify an elementary school student as unfit for a college track does her a great disservice!

Go ahead. Get on the same team! After all, isn’t “what’s out there” after school is over the true opponent? With our hard work, teamwork, and a long-term vision, spectrum kids can have an incredible support system to help them launch into adulthood.

BIO

Julie Clark is an author, speaker, small business owner, and mom with a heart for increasing ASD awareness. Julie’s book, Asperger’s in Pink, is available at FHAutism.com in both eBook and print formats.

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Jamie Pacton, MA
Autism Asperger’s Digest | March/April 2013

Mom-tested strategies for sanity during sleep-deprived times

Writer Ralph Waldo Emerson once remarked, “There was never a child so lovely, but his mother was glad to get him to sleep.” My son Liam, a four-year-old with autism spectrum disorder (ASD), is indeed a lovely child, but I heartily agree with Emerson: I’m always delighted when Liam settles into sleep.
Of all the ups and downs of raising a child with ASD, it’s the sleep deprivation that wears on me the most. I love sleep (being the oldest of 10 kids, I learned from an early age to sleep through almost anything); but, because Liam’s an insomniac, I haven’t slept through the night in five years. How can I expect my son to properly learn and develop when he’s not getting enough rest? How can I help him fall asleep and stay asleep?
These questions have haunted me for years, and I’ve found that the best I can do is implement consistent strategies that help Liam and everyone else in our house get as much sleep as possible. It’s an art more than a science but produces some livable results.
For Liam, falling asleep used to be the biggest issue. At two, like many toddlers at bedtime, he would wiggle, snuggle, dance, prance, babble, and do pretty much anything to stay awake. In Liam’s early days, bedtime took about three hours. To cope, I bought an e-reader, I made my peace with my whole evening going toward getting him to sleep, and my husband Adam and I traded off as needed. On the advice of many professionals, we also tried a disastrous stint with the cry-it-out method; we made elaborate baby-gate barricades (which Liam quickly learned to scale); and we tested many other methods in between. Ultimately, it was the consistent enactment of a simple bedtime routine that has made the process of putting Liam to sleep short and relatively painless (unless he’s in a biting/pinching phase).

Here’s a typical night in our house:
• 6:15 pm: After a full day of therapy, sensory play, running, swinging, gymnastics, swimming, and other run-his-energy-down activities, Liam takes a dose of melatonin in a teaspoon of jelly. This helps immensely with his initial falling asleep.
• 6:20 pm: Liam takes a bath, brushes his teeth, and heads to bed.
• 6:45 pm: Liam settles on his mattress (he sleeps on a mattress on the floor because his incessant bed jumping has broken two beds frames in the last year). Then, I recite two books and sing him one song. I never deviate from the books or song because they are what signal to him that it’s bedtime. (And, yes, I wonder sometimes if I’ll still be reciting Goodnight Moon to him when he’s 10).
• 7:00 pm: Liam is asleep, and Adam and I settle into a working night.
• 11:00 pm – 12:00 am: Just as Adam and I are almost asleep, chatter and laughter erupt from Liam’s room.
• 12:00 am – 6:00 am: We rush to give Liam a drink of water, a quick hug, and hope that he will settle back into sleep. Most nights, however, once Liam sleeps about five hours, he’s then up for four or five more.

So, on the downside, Liam averages only about six hours of sleep a night and it’s a good night if Adam and I each get three hours of mostly uninterrupted sleep. On the upside, we have figured out how to get Liam to fall asleep initially, and that’s progress. It’s small progress, but it’s progress. As we work on helping him stay asleep, we hope that consistency will again do the trick.

In the meantime, we’ve discovered some strategies for sanity in sleep-deprived times:

Don’t Be a Martyr
I have this bad habit of channeling supermom, and I tried to do all of Liam’s night care alone. This left me cranky, sad, and utterly spent for the demands of the next day. Now, Adam and I switch every hour or so just to break up the care and get a bit of rest.

Nap Like It’s PreK
During the day, when our work and childcare schedules allow, we switch off taking naps. Liam no longer naps, but even just a 15-minute power nap helps keep the adults in our house going.

Change Your Perspective
Perhaps a full night’s sleep is overrated? I would say no, but recently, a friend sent me an intriguing article from Psychology Today. The author notes, “Previous to the mid-1800s, many Americans…would fall asleep around dusk, wake up a few hours later for a couple hours, and then sleep for a few more hours before waking around sunrise. Or, they would sleep for a few hours at night and a few more during the day” (Wolf-Meyer 2012). So, maybe Liam’s not an insomniac, maybe he’s just more of a nineteenth-century sort of sleeper. It helps me to think of it this way because it shows me that even so-called normal sleep has only been normal for a few hundred years.

On this same note of perspective shift, Adam told me a few days ago: “Sleep is no longer an entitlement; it’s a gift. Now that I see it like that, I’m happy for whatever small rest I get.”

Take Care of You
I know how hard it is to follow this advice, but I think it’s worth it. I rarely find time for the gym or a hair appointment. At least once a month, however, I hire a babysitter and take a few hours to nap, get some exercise, go to a museum, or read a book in a coffee shop. It’s not much, but it’s something just for me. Sometimes that’s as refreshing as a full night of sleep.

So I say to you all, good night, good luck, and we’d love to hear from you. Share your ASD sleep stories and strategies with us by commenting on this blog.

Reference
Wolf-Meyer, M., “How Natural Is Human Sleep? Coming to Terms with American Expectations of Normal Sleep,” Day In, Day Out, Psychology Today, October 30, 2012.

BIO

Jamie Pacton, MA, is a writer, professor, and mother to two young boys (one who is on the spectrum). She is The Early Years columnist for Autism Asperger’s Digest. Visit her website at www.jamiepacton.com.

The post Perchance to Sleep appeared first on Autism Asperger's Digest.

Autism Asperger’s Digest | May/June 2013

Once during a conversation with an adult friend of mine, who has autism, the topic turned to death. “I’m afraid of dying,” he said.

“I think most of us are,” I replied, but then I thought to ask him why. His response? “Death really messes up your routine.”

He’s right, of course. To him, death means no more bus rides downtown, no more swimming at the Y, no more going out to dinner with friends, and no more drinking sodas on the weekend. Death is the ultimate change, and even thinking that his routine would be interrupted by such a finite change caused him anxiety. The thought of death and, thus, change, was quite overwhelming. Forget that, once deceased, he would not be around to worry about not having his usual schedule.

Most of us struggle with disruptions and change, and processing the death of a friend or family member is a huge upheaval for us—so imagine what that situation is like for folks on the spectrum who thrive on familiarity and routine and can be easily upset by minor changes. When death arrives, a major change has occurred that is difficult to process.

Don’t Assume, Assess!

It is important when working with individuals who have autism spectrum disorder (ASD) that we as parents and professionals remember that the individual might view death differently than we would expect. Do not assume that the individual with ASD will be confused, sad, mad, happy, scared, upset, or ambivalent. Use your best observational skills to determine what the individual with ASD is thinking, wondering about, worrying about, or feeling. Assess the situation and be prepared for anything.

Don’t Take It Personally

Accidental rudeness happens often, but typically people are on their best behavior when someone has passed away. Normally we tiptoe around such sensitive social situations to be respectful and polite, but a lack of social understanding plus a need to make sense of a confusing situation might lead individuals with ASD to ask “inappropriate” questions or say things that upset others. People on the spectrum might ask seemingly rude questions about how the person died, or what the cremation or embalming process is like. Or, a child might wonder who will take her to get ice cream now that a family member has passed away, leaving others to wonder if she even cares that the person died. Remember, folks with ASD are processing this grief the best way they know how, and it is our job to give them clear, concrete information that helps them understand the situation, answering questions that may be important to them (who will take me to get ice cream, and when!) and also providing information that the child might not directly ask for, but which will be helpful to him.

Don’t Forget to Teach

After assessing the situation and finding out what the child needs to know and learn, it is time to teach facts and skills. Facts such as what happens at a funeral or what happens to a body when someone dies can be addressed through a social narrative. If this is the first time a child is learning of death, there might be a lot of questions, or you may have to decide what basic information you are going to present to a child who doesn’t voice many questions. Find out what the family’s religious beliefs are and incorporate these as appropriate.
Skills that the child may need to learn might include emotional understanding of one’s own emotions as well as other emotions, coping, and relaxation. Some individuals might feel their sadness acutely and need strategies and practice coping with crying spells or redirecting perseverative thoughts. Creating a written or picture choice board with calming behaviors might be helpful, such as listening to music, writing in a journal, or taking deep breaths.
It is likely that you will be dealing with grief at the same time that you are talking to a child about death and grief, so it might be challenging to employ evidenced-based strategies that you may have used before. It is crucial though, not to just “talk it out” with your child but to use visuals that will help communicate clearly what you are explaining regarding death and dying. Schedules, social narratives, Comic Strip Conversations by Carol Gray (Future Horizons, 1994), written rules and reminders, and even a scrapbook of memories can be meaningful visuals that will help provide understanding, comfort, and calm to the person with ASD.

BIO

Katie Brady, LCSW, works with individuals with ASD and their families, and was a therapist at the Chapel Hill TEACCH Center for six years. Read more about Katie’s ASD services at www.katiebradylcsw.com.

Resources

Faherty, Catherine. 2008. Understanding Death and Illness and What They Teach about Life: An Interactive Guide for Individuals with Autism or Asperger’s and their Loved Ones. Arlington, TX: Future Horizons.

Heegaard, Marge. 2009. When Someone Very Special Dies: Children Can Learn to Cope with Grief. Minneapolis, MI: Woodland Press.

The post Teaching About Death and Grieving appeared first on Autism Asperger's Digest.

James Ball, EdD, BCBA-D
Autism Asperger’s Digest | March/April 2013

Knowing how to make, handle, and save money increases an individual’s quality of life.

Most important, have a double-check system, as most businesses do. When a check is written or cash is paid over a certain amount (e.g., over $1,000), it must be approved first. Make it the rule!

BIO

The post Financial Literacy appeared first on Autism Asperger's Digest.

AADigest: May – June 2013

Columns:

Features:

With today’s smartphones, it is really easy for the individual with ASD, parents, and teachers to carry a portfolio.

Put Your Portfolio on Your Phone

Technology Is a Backdoor

Access Higher Education

Make It Easy for Others to Help

BIO

Resource

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

Home-Team Advantage

Competition or Cooperation?

Communication + Consistency = Cooperation

Teamwork Tips for Parents

Teamwork Tips for Teachers

Teamwork Tip for All

BIO

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

Don’t Assume, Assess!

Don’t Take It Personally

Don’t Forget to Teach

BIO

Resources

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