Ah, the crafty comeback. Who among us has never yearned for the obsidian arrowhead of words in the face of the rude, tiresome or just plain senseless question or remark from strangers, or from relatives whose blood is not thicker than water. MAD magazine’s Al Jaffee raised the art of the comeback to its highest humorous form in his series of Snappy Answers to Stupid Questions books. Among my favorites, a mother with identical, dressed-alike five-year-old sons fields the same question over and over: “Are they twins?” “No,” deadpans the mother. “He’s an only child. Who’s your eye doctor?” Nowadays, Internet forums collect similar quips from real people. Parents adopting Asian children report confronting questions such as “Do you have to feed them a lot of rice?” with wisecrack replies of “Are you feeding yours a lot of baloney?” or “We tried to wean them off but they started speaking French.”

These humorous comebacks apply a light touch to obvious or silly questions, but they achieve what we all want of a pithy retort—that we get the last word, that those words have enough bite to puncture and deflate the party who has offended us. For some of us, the compulsion to do this skyrockets when the remarks and questions come as insults to our children or our parenting competence. Though autism awareness among the general population has grown in recent years, ignorance still abounds, and we are all astounded by how judgmental and mean-spirited some folks can be in that ignorance.

Our children with autism navigate the world through an obstacle course unimaginable to those who have no familiarity with autism. The sensory challenges alone would bring down most healthy adults, not to mention the layering on of communication frustrations, disruptions of routine and environment—and having to deal with unreasonable people. “Why can’t you get your kid to ______?” “Will he ever be normal?” Sooner or later most of us raising a child with autism will face the rude question, the derisive glare, the just-loud-enough-to-overhear put-down. And the yearning for a snappy comeback ignites.

With the last decade’s increase in autism comes an increase in families confronting the unkindness of strangers, and an accompanying glut of advice on formulating comebacks. Societal incivility in general is spreading like fungus, so it’s no surprise that the snappy comeback has veered away from the humorous or thoughtful edge that might actually lead to a shared chuckle, a conversation and a degree of understanding of autism. Websites touting “best” autism comebacks offer the likes of:

“You should teach your son table manners.”
“Totally! I couldn’t stop him from flicking a booger into that salad you just finished.”

“All he needs is a good smack and he’ll get the message.”
“If I holler at you in French, will you become fluent?”

“Can’t you stop her from doing that?”
“She only does it when her autism is in its contagious stage.”

I’m uneasy with the proliferation of this type of comeback, as I am with anything that drives a deeper wedge between our kids and the vast general population with whom they must learn to interact if they are to take their rightful place in the world as productive, independent adults. I want to erase, not darken, the line drawn by the us-them mentality, and any mentality that views the child with autism as a lesser being.

The snarky comeback lowers us to the level of our harasser. The satisfaction it may give us is momentary. It’s done nothing to enlighten an uneducated mind. It models for our child a means of sustaining, intensifying and elevating conflict rather than resolving it. It propagates and mirrors the incivility we so deplore when it is directed at our children. If each of us in our own small sphere won’t make the choice to refuse being part of it, how will this ship of crassness ever turn around? Is it easy to keep a civil tongue in your head while those around you cannot or will not, when they harpoon you in your most tender spot? Heck no. Not much about parenting a child with autism is easy. But taking the high road in the face of jerks and meddlers becomes the easier choice when we consider that our responses to ignorance and prejudice shape our child’s future, one encounter at a time. It’s really a very simple choice: perpetuate the status quo, or build awareness, understanding and acceptance, one mind at a time.

Refusing to lower ourselves to the level of our tormenters doesn’t amount to retreat or meekness. We often rue words flung in anger but seldom regret taking the high road. That I so deeply believe this didn’t mean it was always easy for me to model it for my children. I’m petty enough to be proud of the time I gave a mouthy dame the three-finger salute and told her to read between the lines. But it was worth the hundreds of snarling retorts I swallowed or pre-empted to see how my sons have grown into young men who stand up for themselves assertively, civilly, often with humor, and often stepping in to defend those who struggle as they did (and do).

Consider too that silence can be an eloquent comeback. Not every remark or stare is worthy of your response. I truly did not care (still don’t) about the opinions of strangers in public, people I didn’t know and would never see again, people who had no understanding of—and in many cases, no desire to understand—the factors leading up to the moment in time where our paths intersected. The famous journalist H. L. Mencken employed a single response to all critics and hecklers: “Dear Sir or Madam: You may be right.”

As I write this, Bryce is finishing an essay for a college writing class, laying out the elements of what he considers an ideal education. The teaching of self-advocacy and respectful interpersonal communication skills, he argues, is as important as any academic subject. Our advocacy for our child with autism educates others. In setting the tone of that discourse, especially in front of our children, we sow the seeds of their own brand of self-advocacy. Corrosive or constructive? We mustn’t allow comebacks to become setbacks. If there were to be an all-purpose retort, perhaps it’s that “We’re all still learning.”

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

Copyright © Autism Asperger’s Digest. 2012. All Rights Reserved. Any distribution, print or electronic, prohibited without permission of author.

People often ask me which of the many professionals my wife and I have consulted about our son Ezra has taught me the most. A doctor? A therapist? A teacher? They are often surprised to hear the answer: a barber.

As a toddler Ezra—like many children with autism—seemed uncomfortable in his own body. He would flee from noisy rooms, hands pressed against his ears. Even the gentle hum of a drinking fountain’s motor could frighten him. The texture of clothing so irritated him that he would often strip spontaneously at neighbors’ homes or the supermarket.

When he was three I decided it was time to tame his unruly head of straight, brown hair. He squirmed out of the chair in the hair salon, so I sat down, holding him in my lap.

“Noooo!” Ezra screamed at the woman wielding the scissors. “Don’t touch my hair!”

Despite her attempt to win him over with a lollipop, Ezra resisted, eventually grabbing her scissors and tossing them to the floor. I muttered an apology, paid the bill, and trailed after my son out the door.

That night after Ezra finally fell asleep, my wife finished the haircut. For more than a year, she maintained that practice, doing her best to trim his locks while he dozed.

Then someone recommended Hugh, the special-needs barber. I had to drive half an hour to get to the salon, a simple, stark shop with one thing that delighted Ezra: a basket of plastic dinosaur toys. While we waited, Ezra sat on the floor lining up the creatures in patterns, just as he did at home. Then he sat on the red chair, and Hugh—a stout, balding man—sprinkled talcum powder in Ezra’s hand.

“Now, my friend, I’m going to put some of this on your neck, so it’s not so itchy,” Hugh explained.

Before each step in the process, he offered Ezra a warning: “My friend, I’m going to comb your hair now. That okay?” Before he spritzed Ezra’s head with water, he gently sprayed some into my son’s palm.

“Don’t cut my ear off!” Ezra cried at one point, ducking. “You’re going to cut my ear off!”

Hugh calmly took Ezra’s little hand in his, showing my son how to hold his own ear flap down. Each time he spoke to Ezra, he used the same phrase: my friend.

Hugh told me he’d once worked in a children’s hair salon where the other employees were frightened to work with children who posed challenges. “What’s the big deal?” he asked. “They’re just people.”

At one point, Ezra got so antsy that he let his body go limp and slid from the chair. “Come on!” I said, trying to coax him back, but the barber waved me off. “He just needs a second,” he said. He waited calmly while Ezra carefully placed the dinosaurs in a line. Then my son immediately hopped back in the chair.

“Okay, ready,” Ezra said.

Before long, Hugh had finished the haircut. Holding Ezra’s hand, I walked out into the sunny afternoon, my son with the best haircut of his life, and me with lessons for a lifetime of parenting: be patient; follow the child’s lead; explain what’s going to happen next; treat the child with love. And this: they’re just people.

Adapted from Following Ezra: What One Father Learned About Gumby, Otters, Autism and Love from His Extraordinary Son by Tom Fields-Meyer. Published by arrangement with New American Library, a member of Penguin Group (USA), Inc. Copyright © Tom Fields-Meyer, 2011.

BIO
Tom Fields-Meyer, an author and former senior writer for People, lives in Los Angeles with his wife Shawn and their three sons. He speaks nationally about parenting and blogs at followingezra.com.

The Lies that Need Not Haunt Us
by Nicholas Saari, DDS

Three years ago my son was diagnosed on the autism spectrum. As a result, I struggled with four lies regarding my situation—lies I told myself—that depressed me and paralyzed me as a father. These lies stripped away my self-confidence, masculinity, the joys of fatherhood, and almost the bonds of marriage.
Today, by grace, I am free to find joy in fatherhood. If you are a father entwined in similar circumstances, you may have lies that haunt you. Here are my specters—shared in the most humble hope that you too might find freedom in the truth.

Lie #1: My child’s disability is my fault. After all, I’m Dad; I need to find out what I did wrong.
Truth: For three years, I sought a time machine. I wanted to change my wife’s traumatic childbirth, avoid allergens, begin therapies sooner. But this cannot be done. Our child’s disability is not our fault any more than the tsunami that strikes unsuspecting shores—so, find blessings in tribulation, press forward in hope and never look back.

Lie #2: At this time my child needs my love more than my wife does.
Truth: My responsibility as a man is first to my marriage and second to my child—even if my child has special needs. A stable marriage provides security for our children at a time when the world feels insecure. If our marriage is fortified, the relationship becomes a safe haven for a child whose sensory processing, behavior, and emotions are on unsteady ground. Love has no maximum output; it is flower pollen limited only by how hard the wind blows.

Lie #3: No one understands what I’m going through, and no one wants to hear about it.
Truth: There are thousands of men walking a similar path. I simply refused to find them. Once I reached out to men at church, online, and at therapies, it put my situation into perspective. By sharing our failures and successes, we armed one another through empathy, encouragement and acceptance.

Lie #4: I’ll never know what it’s like to be a real dad.
Truth: Measuring fatherhood, not by the world’s standards, but by the little miracles embedded in quality time with my son, changed my life. Every day became a success, even if it was accidental eye contact because I balanced a Hot Wheels car on my head. I didn’t care about my son being a star ball player anymore; I just cared about finding that hidden word or smile. And because of those small gifts, I cried, prayed, and rejoiced over my son more than any typical dad is capable of. That’s as real as fatherhood gets.

Dejection need not be our experience as fathers of children with special needs. I encourage you to identify the lies you believe, dad. Then open up to your wife, other fathers, or even a stranger. Lies are like monsters in a dark room. Once you turn on the light and see them for what they are, they become little more than an obstacle to stub your toe on. Sometimes we just need another person to lead us to the light switch.

BIO
Nicholas Saari is a general dentist in Minneapolis, Minnesota. His son is diagnosed with an epileptic disorder and PDD-NOS. He blogs about his family life at donteatus.com.

Like Dad
by Mark Osteen, PhD

My twenty-two-year-old son Cameron is on the more severe end of the autism spectrum. As a teenager he often acted in ways that mystified his parents.

One of his more puzzling (and frightening) behaviors was a penchant for sitting on the street in front of our house. Sloping downward at a fairly steep grade, the road overlooks part of our neighborhood; we speculated that Cam enjoyed the wide vista. He also loves long rides in the car, so squatting in the street may have been his way of protesting when he had to stay home. Fortunately there is little traffic on our street; nevertheless, this behavior baffled and frustrated my wife and me.

One Sunday he was particularly intransigent about remaining in the road: we coaxed; we pleaded; we tried to bribe him
(“If you come inside you can have ice cream”); we threatened; we tried to ignore it, on the theory that if we didn’t react, he’d decide it wasn’t any fun. Ultimately we just put chairs in the street and tried to wait him out. But when darkness began to fall, I got worried.

“Hey, Cam, want to come inside and watch a video?” I asked.

He didn’t even look up. I heaved a sigh, then went into the house to grab something to read. When I opened the door to return, I saw Cam walking up the driveway, holding his mom’s hand. As soon as he spotted me, he stopped; I ducked back into the house to watch from the window.

The light dawned on me: road-sitting was a way to defy his dad. I thought back to my own teen years, when I had rebuffed my father’s attempts to hang out with me, and criticized his every move. Was this so different?

One night recently I was resting in my favorite recliner, reading a magazine, when I got up to take a phone call. A few minutes later I peered into the living room: there was Cam, sitting in my chair. In his hands was the same issue of Autism Asperger’s Digest I had been reading. He thumbed through it, staring intently at each page. He can’t read, so he couldn’t know it’s a magazine about autism. The brightly colored pages—some with photos of people like him, others showing picture exchange communication systems (PECS) and treatments—may have caught his eye. Perhaps it all seemed familiar to him.

Or maybe he was thinking: I’m going to figure out once and for all what Dad sees in these magazines. Whatever his motive, the sight put a huge smile on my face. Right then I remembered that when I’d reached my twenties, suddenly my dad hadn’t seemed such a dork. Apparently Cam has arrived at the same conclusion: it’s okay to be like dad.

This incident reminded me that beneath the “behaviors” and the disability is a young man like other young men—a guy trying to forge his own identity, using his dad as a foil.

BIO
Mark Osteen is professor of English at Loyola University Maryland. He is the author of One of Us: A Family’s Life with Autism and the editor of Autism and Representation.

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

Why Support Groups?
It doesn’t matter how good parents’ intentions are or how hard we push our kids to make them feel a sense of obligation to support their sibling on the spectrum. The thing we must remind ourselves as parents is this: these kids already know what autism is. These are kids who experience autism on a daily basis. Just as we parents had no time to prepare ourselves for what to expect when a child is diagnosed with autism, neither did they. These kids do not live so-called normal lives.
Just as parents of spectrum kids need support from others outside the immediate family, the siblings of spectrum kids need it, too. If there is support to reach out to in a community, it is usually geared toward the parents or the child with autism. Sibling support groups are too often few and
far between.
Over the summer I took matters into my own hands and gathered a group of siblings of spectrum kids from the parent support group I belong to. I was curious to see if the impact my son with autism has had on my own kids would be the same for other siblings of spectrum kids. I was the only adult there and figured it would be like pulling teeth to get them to talk about autism.

To my surprise all it took was for me to ask, “What is it like living with your brother or sister on the spectrum?” They couldn’t tell me fast enough, so I just let them talk. I held back my own emotions as each one took turns telling me what life was like for him or her. One of the kids spoke about the impact autism has on not just life at home but also that it seems to follow him wherever he goes. Others expressed how their view of autism affects the way they interact with others outside the home, and the emotions they feel, from sadness to anger, when they see classmates with special needs being bullied at school.

The Difference One Sibling Support Group Can Make
To my surprise all it took was for me to ask, “What is it like living with your brother or sister on the spectrum?” They couldn’t tell me fast enough, so I just let them talk. I held back my own emotions as each one took turns telling me what life was like for him or her. One of the kids spoke about the impact autism has on not just life at home but also that it seems to follow him wherever he goes. Others expressed how their view of autism affects the way they interact with others outside the home, and the emotions they feel, from sadness to anger, when they see classmates with special needs being bullied at school. The support group I created has helped the siblings of children with autism in many ways I never expected. The following are positive takeaways for each sibling who attends:

I can feel unconditional acceptance from other siblings of spectrum kids. There is a bond created among families that allows us to cry one moment and burst out in laughter the next. A sister decided to tell an embarrassing yet funny story about an incident in the grocery store, and all the kids were giggling because they understood why it was funny and before long she had us all laughing. What I saw happening was the same thing that happens in our parent support group—through tough moments of resentment, anger, and sadness can come release.

I can make friends who share a similar background. For these siblings, bonding and finding friendships among the group is so valuable. My three oldest children will rarely ask friends to spend the night at our house because they know they will be asked many questions regarding their brother’s behavior. I was surprised when my daughter asked if she could have a friend spend the night. When I realized it was a girl from our sibling group, I knew she was finally able to fulfill her desire to have a friend spend the night and just have some fun without her brother being the center of attention or having to explain his behavior.

I can have a safe place to share and listen. One sister told me she often experiences deep sadness and feels worried about what will happen to her sibling with autism in the future. I asked her if she had spoken to her parents about how she was feeling. “I know my parents love me and care how I feel, but I don’t want to add to their stress and I know they have enough to deal with. I don’t want to make them feel bad,” she replied.
This young girl truly believed that expressing what she felt would only result in more stress and pain for her parents, so she remained silent. Because this girl was able to share so many thoughts and feelings she had kept inside for so long, I felt a huge weight had been lifted off her mind that day. This feeling was confirmed by the hug and thank-you I received from her before she left to go home. She also wanted to know when our next sibling meeting would be!
There is something about being able to share struggles and concerns with those who can relate that makes siblings of spectrum kids more receptive to support and encouragement and even advice. The anxiety of what will happen in the future seems to lessen with having the support of others around their families.

I can recognize the strengths and challenges in regard to my sibling with autism. When siblings are provided with an outlet to discuss the many struggles they are challenged with, they also will begin to realize many good things about living with autism that are available to them because of the unique perspective they have developed.
I can find positive solutions to problems from support group members. When they don’t know how to handle difficult situations, I am able to offer siblings positive solutions. Many brothers and sisters react out of instinct to protect their sibling with autism when they encounter someone who is being cruel. Parents want their children to be respectful, but when a negative comment is made by an adult, it leaves a sibling feeling a bit confused about how to respond. Siblings can find support by listening to how other kids have reacted in similar situations. I have used these moments to tell siblings they should never feel ashamed if they do react in a negative way because it is hard even for parents to always react appropriately. I use these examples to remind siblings that people can be judgmental simply because they are afraid of something they do not understand. Siblings can be empowered when told the truth of how special they are to know and understand autism the way they do. If siblings begin to see that if people react because they lack understanding, then they might feel a sincere desire to find ways in which they can respond that brings education and awareness to their community.

I can have an outlet to relieve stress. Siblings of spectrum kids deserve time set aside that is only about them. We need to provide them with outlets for the stress they feel. These support groups are outlets for the negativity the kids feel in their lives. Much like the young girl I spoke with who kept her feelings locked up and silent, siblings must dispose of bad energy, too.

I am not alone. Finding that they are not alone and there are other kids who deal with many of the same challenges they do gives validity to how siblings of spectrum kids feel—resulting in allowing them to understand that the emotions they sometimes have are normal and okay.

Having support systems in place for parents and siblings of spectrum kids provides relief. Siblings can find the strength they need through these outlets to bring awareness about autism to their community in positive ways. Hearing the voices of siblings of spectrum kids talk about their lives gives me insight into how special these children really are and how one day these same voices will be our future leaders. By giving my neurotypical children the support they need, I am also providing an outlet for them to develop the confidence they need to continue making such an amazing, positive impact on those around them.

BIO
Brooke Zavala lives in Chillicothe, Ohio, with her children. She’s a member of the ROARS (Reaching Out for Autism Research and Support) Group.

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

If I could go back in time, here are the 10 books, movies, and resources I would have given myself. Read these, watch these in this order, and you will feel less lost and clearer about where you are and where you’re going with your child with autism.

After my son’s autism diagnosis, I felt like I was in a fairy tale. Not one of the magical, singing-birds, and fairy-godmother stories, but a darker tale—the kind with creepy woods, twisting paths, warring factions, real fear, and crushing loneliness. It was not the story I imagined for my family, but as I moved deeper into the realm of autism, I discovered that other people had been there before me. Slowly, as I read books and watched films about families living with autism, I saw the trail of bread crumbs that would lead me toward a better understanding of the strange place where my family had come to.

It is important that you find that trail as well, but I know it’s easy to get lost along the way.

I was totally overwhelmed by the two theory-based clinical manuals that were recommended as our newly diagnosed essential reading. In those early days I was still wrapping my brain around Liam’s diagnosis and could not bring myself to believe that these clinical guides were talking about my son (although I recognized him in every page). From these books,
I moved on to recovery narratives, which crushed me mightily as I realized how different—how much worse—my son was from the kids in those books.

It took me time to discover that there is a better order to read them in during those first days, weeks, and months after a diagnosis. If I could go back in time, here are the 10 books, movies, and resources I would have given myself. Read these, watch these in this order, and you will feel less lost and clearer about where you are and where you’re going with your child with autism.

1. Start with Ellen Notbohm’s beautiful book: Ten Things Every Child with Autism Wishes You Knew (Future Horizons, 2005). It’s a quick read that has great power because it focuses on the child underneath the label. Reading this book will help you see your child again—with all his charming quirks—rather than just a collection of autistic behaviors.
2. Now you’re ready for Temple Grandin’s The Way I See It: A Personal Look at Autism and Asperger’s (Future Horizons, 2011). Grandin is famous for clearly explaining what it’s like to be on the spectrum. Reading this book will help you better understand your child’s unique perspective, and it will give you a sense of the scope of what is possible for a person with autism.
3. Next it’s time for some practical action. Turn to Autism Speaks’ downloadable “100 Day Kit”. This invaluable resource will help you with Early Intervention, talking to your family, and many other common issues. It’s also a great way to get organized for what you need to do after a diagnosis.
4. After getting to a better place emotionally and starting services for your child, it’s time to get some ideas about how to play and connect with your child. The book I used for this task was Carol Stock Kranowitz’s The Out-of-Sync Child Has Fun: Recognizing and Coping with Sensory Processing Disorder, rev. ed. (Perigee Trade, 2006).This book has great tips on how to make any home more fun. After reading this I turned Liam’s bedroom into an obstacle course complete with mattresses, trampolines, tunnels, blanket tents, and a rug for him to roll up in. He was instantly happier at home as he jumped, rolled, and burrowed in ways that satisfied his sensory-seeking.
5. Now that you have some ideas for play, it’s a good time to read about the autism-treatment method called Floortime, which offers a large play therapy component. Read Stanley Greenspan’s Engaging Autism: Using the Floortime Approach to Help Children Relate, Communicate, and Think (Da Capo Press, 2009). You can also find videos of the Floortime method in action on the Internet, which can show you how to flow with your child’s interests and draw out interactions to build relationships with him.
6. After reading these books you are ready for memoirs and recovery narratives. These types of books usually show how diet, therapy, and other interventions help a child on the spectrum learn to relate to others, communicate, and be gradually mainstreamed into a regular ed. classroom. These books offer tales of hope and perseverance. Two that I enjoyed were Christina Adams’ A Real Boy (Penguin, 2005) and Catherine Maurice’s Let Me Hear Your Voice (Robert Hale, 1998).
7. Now that you’ve had some time with the diagnosis and you’re better educated about autism terminology, you are ready to watch some of the excellent documentaries that explore the world of autism. Start with Loving Lampposts (Cinema Libre Studio, 2011), Todd Drezner’s documentary that offers an overview of the debates that divide the autism community. It leans toward acceptance of autism, rather than a cure, and it has a deeply personal dimension as it tells the story of this director’s son who is on the spectrum.
8. For a different take on autism and treatments, check out Finding the Words (Horn Productions, 2007). This documentary follows the stories of eight children who have recovered from autism; the film strongly advocates the biomedical approach to autism treatment. The before-and-after footage of these children is truly inspirational and, even if you are not excited about the notion of cure, it can give you some ideas for special diets and supplements.
9. Now it’s time to enjoy Temple Grandin, the HBO biopic about Grandin’s life (Ruby Films and Gerson Saines Productions, 2010). This film is eye-opening and encouraging as it shows how Grandin—a nonverbal four-year-old—became one of the most well-spoken, influential voices in the autism and livestock industry communities.
10. From there explore the many excellent websites, blogs, and parent support forums that can give you ideas, inspire you, and support you when you are feeling low.
11. Read be different: Adventures of a Free-Range Aspergian (Broadway, 2012) by John Elder Robison. This funny, helpful book tells Robison’s story of getting an Asperger’s diagnosis at 40 and how it helped him re-envision his own life. It also offers tips for helping kids on the spectrum deal with common life situations.
12. For a look at autism-through-history, check out Not Even Wrong: A Father’s Journey into the Lost History of Autism (Bloomsbury, 2004) by Paul Collins. This book offers a dad’s-eye-view on autism. Collins also speculates and investigates undiagnosed autism throughout history. This is a great book for helping you feel connected to other people with autism and it offers well-researched stories as well as personal anecdotes about Collins’ son.
13. Read Autism Every Day (Future Horizons, 2011) by Allison Beytien. Beytien is a columnist and mom to three (!!!) boys on the spectrum. This book is funny, relatable, and offers tips for many different everyday autism situations. From the “Disney Gene” to her thoughts about special diets, this book illustrates Beytien’s commitment to let her boys laugh more than they cry and it celebrates her family’s motto: “Improvise and Overcome!”
14. Learn more about Carly Fleischmann’s incredible, moving story. Carly is a teenager on the spectrum whose world opened up when she was 11. One day, out of the blue, she ran to a computer and typed: “Hurt. Help.” From there she began to type more and her rich inner world emerged. Carly has now transformed from a severely autistic child who banged her head, stimmed, and had no language, to a leading spokesperson (through her computer) and autism advocate.
15. Check out the amazing sensory products and autism-related toys at Fun and Function. They offer chew toys, swings, bouncy balls, and hundreds of other products that will help any child on the spectrum be more organized and calm. Every time I visit this site, I find something new to help Liam’s sensory issues—great stuff!

This is a strange land, full of the unexpected, but you are not alone. Follow the bread crumbs left by others. Research, read, and learn so you can find a path through the forest of autism. Use these books, films, and resources as a start and then blaze your own way. You’re certain to find many more great learning tools and many wonderful people along the way!

 BIO
Jamie Pacton, MA, is a writer, professor, and mother of two young children, one of whom is on the spectrum.

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

“Twelve-year-old Zena was terrific at using her daily picture schedule. She came into class each morning and immediately checked to see what her first activity was and whom she would be working with. However, her teacher found that there was one major problem.
If something did not go exactly as scheduled, Zena would get very upset and usually would not proceed with her schedule. While the teacher was happy that Zena had gained some independence, she was not pleased that Zena could not tolerate any change at all. It is one thing to try to perfectly control everything in the life of a three-year-old, but it is impossible to do so with a teenager. The teacher realized that no one had taught Zena to tolerate the changes that occur in all our lives”  (Bondy and Frost 2011, p. 122).

When working with children with autism spectrum disorder (ASD), it is often recommended that we try to keep everything highly structured and systematic because they don’t like to deal with change—they prefer to preserve sameness. The danger of this approach is that it can lead to substantially bigger problems when changes do occur, as they inevitably will! Should we wait until we see major behavior problems arise in reaction to change? We think that all children should be inoculated against inescapable variations in what life presents.

So, how can we teach individuals with ASD to tolerate change? By introducing it systematically rather than waiting for it to haphazardly take place. Rather than trying to create a fixed schedule suggesting we promise that everything we plan for will indeed occur, we introduce “surprise” lessons within the daily routine.

The first of such surprises should involve changes to an event or activity that are highly motivating. For example, the first surprise for Zena might be to go from doing a math lesson
to watching her favorite DVD or listening to her favorite music. To help make surprise part of a schedule, a special card or picture can be placed on a schedule or simply shown by the teacher. It is likely that Zena at first may not be pleased, but as the movie or music is played, she is likely to join in with the other students.

At this point all surprises should involve fun things to do. Of course, the teacher should also provide lots of praise for Zena’s new skill!

Over time, and as Zena reacts more calmly to these surprises, her teacher begins to introduce changes that are more neutral in outcome—perhaps Zena is surprised that she’ll work with Ms. Jones rather than with Ms. Hayes, or that English will be worked on before math, or she’ll be working on the table near the window rather than by the wall. During this time some surprises should be fun while others are simply “such a bother,” though not threatening or scary. It will be helpful to add some extra rewards each time the student tolerates changes—perhaps accumulating a series of stickers to be traded in for something special.

It is important to avoid using the same surprise at the same time in the schedule. If there is any ritual built into how this lesson is done, the very purpose of it will be undermined!

Finally, some of the changes should reflect the unpleasant parts of life that few of us truly enjoy: “Surprise! Your favorite toy doesn’t work.” “Another child is riding the only bicycle we have!” “There is no more popcorn.” “We must go to the dentist,” and so forth. Here, too, it will be important to provide other types of rewards for tolerating these changes as long as they are not giving in to the child’s dislike for the lesson. Along with these unfortunate surprises, the teacher must still remember to mix in some happy and neutral surprises—less surprise comes to mean “bad things are coming.” Over time a well-prepared teacher would never be without a handy Surprise! card so that when the office calls and says, “Sorry, your class can’t go to the gym—it flooded again!” you can simply turn to the class, take out the magic card and announce, “Surprise!”

These “schedule surprise” lessons should be combined with other strategies such as teaching “waiting” by gradually increasing the delay between the student requesting an item and actually receiving it. Another strategy that can be combined with a schedule involves teaching “later.” For example, although a child has requested playing on the swing, the teacher can add an icon of that on an existing schedule after completing several activities, thus implying “later” rather than “never.” A different strategy involves teaching children to make choices within a schedule. For example, the schedule can include a blue box or a green box. Each colored box is associated with a set of activities from which the child can select and put on the schedule. Perhaps blue activities involve literature and the child can choose to read a book or listen to an audio book. Green activities could involve a selection of art activities.

Each of the strategies in this article is designed to help individuals make choices and tolerate delays. Children and teens on the spectrum can learn to accept that while the world is not always completely predictable, there are many rewarding activities and events available.

BIO
Lori Frost, MS, CCC-SLP, is a speech/language pathologist and Andy Bondy, PhD, is a behavior analyst. They co-founded Pyramid Educational Consultants, Inc. They also co-authored the PECS Training Manual, 2nd ed.; A Picture’s Worth: PECS and Other Visual Communication Strategies in Autism, 2nd ed.; and Autism 24/7. Both travel extensively to train parents and professionals about PECS and the Pyramid Approach to Education.

Reference
Bondy, A., and L. Frost. 2011. A Picture’s Worth: PECS and Other Visual Communication Strategies in Autism, 2nd ed. Bethesda, MD: Woodbine House.

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

People with Asperger’s Syndrome (AS) will always have different brains, but I firmly believe that different does not have to mean disabled. Many adult Aspergians—including me—were disabled as children, but through hard work, determination, and acquisition of hard-won wisdom, we emerged as successful, capable adults.
Unfortunately success does not come easily, nor is it assured. Consequently when you live or work with kids with AS, it’s easy to become discouraged. You watch repeated social failure while recalling how easily you succeeded in similar situations, and the social failures you observe seem simple and self-evident.
Always remember that social subtlety and nuance may be obvious to you, but it’s most assuredly not obvious to people with AS or any autism spectrum disorder (ASD). Nypical people (my abbreviation for neurotypical—those without autism) are born with the instinctive ability to read others and evaluate tone of voice, expression, and body language. Kids with AS or ASD lack that ability either in whole or in part. Therefore, they have to learn what comes naturally to their peers through years of hard work. That process of learning is the path to fitting in, and emerging from disability.
Social skills are the most important thing you can teach a young person with AS. And teach it you must, because few kids with AS will be able to learn such skills on their own. It’s both your greatest challenge and opportunity as parents, educators, therapists, and counselors.

Learning to Fit In
When I was young I could not make friends. I couldn’t play in groups. At school I didn’t do assignments the way I was told, and I flunked out and became a juvenile delinquent. Those are all signs of failure. That’s what psychologists look for when deciding if you have a disability. If you’re eccentric or even weird, but you’re not failing at work or in your personal life, you are not disabled. You’re just different. It’s only when you fail at some key thing—as I did—that you become “officially” disabled. My different brain just would not conform to the mold my teachers and other kids tried to stuff me into.
It was AS that set me up for much of my failures in my early years. Luckily the state of failure wasn’t permanent. I wanted to fit in and succeed, and I worked hard to learn to get along. I taught myself the basics of reading other people. I learned how to divine what people expected of me, and I learned how to deliver on that while still staying true to my own beliefs.
This strategy worked. Today I’m quite successful, and the same AS traits that made me a failure as a kid have played a large part in shaping my success as an adult. The brain differences that made it difficult for me to interact with people actually helped me concentrate on other things, like machines. That concentration led me to develop abilities that others don’t have, and I’ve been successful in using those skills to advance my career. That’s really a good example of how something that seems like a pure disability can actually be a gift. That was true for me, and it can be true for the Aspergians in your life, too.

My Secrets of Social Success
There were really just two components to my success. First, I figured out what I could do well. You might say I found my competitive advantage.
Learning how to fit in does not change any of the Aspergian components of our brains. A kid who has the unique ability to tell someone what day of the week he was born on at age 10 will probably still have that ability at 30.
The difference is, if he’s learned to fit in, he’ll have become an eccentric fellow with friends and a community, and the world will see him in a different light. That, at least, is the goal.
Then, I learned how to get along with people so they’d accept me into their society where I could practice my gifts and prosper. I believe anyone can follow a similar path
to success in life.

Getting Along with Others
The way I see it, getting along with people has two parts. First, we learn the things we should not do to avoid making enemies. For example, you don’t walk over and take someone else’s dessert in the cafeteria. You don’t cut in front of people in line. When you do things like that, it makes people feel you’re not nice, and if you do it enough, they will dislike you. None of us want that.
Later, we figure out how to do things to build goodwill. For example, I learned to turn to the other person when I’m in a restaurant and let him or her order first. You teach yourself to step up and hold the door when you enter a building with other people. Those small things build goodwill; they show people you are a nice guy.
Notice I said show, not tell. Anyone can say, “I’m a nice guy.” The people who really get ahead are those who actually act like a nice guy, day in and day out. Help the young people in your life become nice, and they will succeed. Then, when they do something strange or unexpected, others just laugh it off instead of getting upset. That’s the power of community—when we learn to act as others expect, they welcome us into the tribe, which nurtures and protects us.

Social “Catching Up”
Some of the changes that help us fit in better occur naturally as we get older. That’s
the nature of AS—it produces what psychologists call developmental delays. We’re slow to pick up some social skills, and we’ll never be perfect at using them, but most of us can learn enough to get by. While all of us grow and develop our entire lives, the pace of development slows down for most people in the late teen years. That’s when those of us with AS get our chance to catch up. “Catching up” may be a lot of work, but with sufficient focus and resolve, it can be done. A kid whose social skills were way behind his peers in seventh grade may end up being just a little eccentric by the time he gets
to college.
Always keep this point in mind: The word delay means what it says—late. Delayed isn’t never, no matter how much it may feel like that at age 15 or even 25. If you ever doubt that, just look at videos of me from a few years ago and compare them to how I look now. I’m so much more expressive and animated, and all that growth happened when I was 50! We never stop growing and developing. It’s a lifelong process.
When we do start catching up, it makes us feel good. We feel successful. At the same time we may be at an age where we are beginning to discover some of our Aspergian gifts. And let’s be clear about something—we all have these gifts. I don’t mean we’re all geniuses; I simply believe each of us has something we’re particularly good at. Depression and attitude can rob us of the ability to see our gifts, but these talents absolutely reside in all of us. Since we Aspergians think differently, we’re more likely to have special or unusual skills, and it’s important to find them.
When we discover and build upon our gifts, it spurs positive feelings in us and those around us, which go a long way toward dissipating the burden of failure that many young Aspergians carry. That alone will make us more successful—because positive attitudes translate to positive results. Success breeds success, just as failure breeds failure. When we feel successful we’re less likely to melt down or lash out at other people, and we get along better socially. As we make friends we become happier, and it starts a cycle of positive reinforcement.

When we get older we acquire more knowledge and our ability to understand abstract concepts improves. Few six-year-olds understand the concept of a neurological difference, but at sixteen most can get it. If my own life is any guide, an understanding of how and why we are different is essential in knowing how we need to change for a better life. That understanding comes with increased maturity and is the path from disabled to gifted. You learn social skills. You discover your strengths and play to them. You find life and work settings that minimize your weaknesses. It sounds easy set out like this, but it’s a huge amount of work. It’s been a lifetime job for me, but the results are worth it all.

Article adapted from the book Be Different (Broadway, 2012) by John Elder Robison.

BIO
John Elder Robison is a free-range Aspergian who grew up in the 1960s before Asperger’s was widely recognized. He founded Robison Service, an automobile restoration company, in Springfield, Massachusetts. Visit his website at www.johnrobison.com.

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

Columns:
The Way I See It - Which School Is Best for My Child with ASD? Temple Grandin, PhD

The First Year - Read This, Watch That Jamie Pacton, MA

Sensory Solutions - Focus on Sensory Craving Britt Collins, MS, OTR and Lucy Jane Miller, PhD, OTR

Transition to Adulthood - Recreational and Leisure Activities James Ball, EdD, BCBA-D

Perspective - Comeback…or Setback? Ellen Notbohm

Social Skill Strategies - Emotional Regulation through Relaxation Katie Brady, LCSW

Departments:
Autism Around the World - Mainland China Liu Wa, MEd

Teacher to Teacher - Teaching Children to Understand Changes in Routines Andy Bondy, PhD
Lori Frost, MS, CCC-SLP

Inspire - Making Rain Shanti Kurada

Features:
The Path to “Fitting In”
The secret of social success is learning how to get along with other people.
John Elder Robison

Making a Difference for Families with ASD
10 suggestions for what extended family, friends, and the parents of children with ASD can do to support each other.
Ann Palmer

Supporting Siblings of Spectrum Kids
Just as parents of spectrum kids need support from others outside the immediate family, the siblings of spectrum kids need it, too.
Brooke L. Zavala

All-Star Autism Dads
Each dad offers a unique perspective on raising a child on the spectrum.
Tom Fields-Meyer, Nicholas Saari, and Mark Osteen

Using Echolalia as a Bridge to Communication
Although echolalia may seem troublesome, parents and teachers can shape it to enhance language progression in children with ASD.
Jake C. Henn, PhD

Developing Independence in Your Teen with ASD
Students on the spectrum must learn self-advocacy and self-regulation skills in order to live on their own, find and keep a job, and attend college.
Chantal Sicile-Kira

My husband is a strange guy.

He is difficult, socially abrasive, and has been known to be arrogant. He doesn’t tolerate small talk, he doesn’t understand why I send paper birthday cards and thank-you notes, and his general sense of social norms is skewed to say the least. He can’t fathom why more words are required when less will do the job just fine. Besides calling me, he only makes one phone call a week (to his parents). He gets frustrated with friends if they don’t act according to the exact parameters he has for friendship.

He once told me that he doesn’t understand “fun” although he will often play pranks on his colleagues that he thinks are funny like “accidentally” blasting music from his laptop in a room full of quiet scholars.

I hear about these pranks and stutter with disbelief. “You didn’t do that, right? Tell me you didn’t do that?”

He just smiles. “Well, yeah, it was funny.”

“Did anyone else think so?”

“Well, no, but it was funny. They just can’t see it.”

I shake my head and wish that others could see what I see in Adam.

Beyond his rough edges, Adam is funny, warm, loyal, creative, smart, interesting, a good cook, and an incredibly loving father and supportive partner. We like the same things, we have similar occupations, the same TV shows make us laugh, and we even agree on the best-ever Ben and Jerry’s ice cream flavor. We’ve been together for over a decade, and he still makes me laugh. I’m happy to see him every day.

I adore him, but not everyone in my life feels the same way. In fact he’s rubbed many people—in both our family and friend circles—the wrong way over the years. I hear all sorts of complaints about his quietness at family gatherings, his occasional seemingly self-aggrandizing pronouncements (that he just genuinely believes are offering helpful advice), and his fidgety discomfort with get-togethers over an hour or so. People rarely come to visit us, and I worry that my family will never get to know the real Adam.

I have defended him, tried to change him, and made excuses for him. Usually I think I make things worse. It’s always been sad and mysterious to me that Adam can’t be the same person he is to me and our kids with other people.

At least it was a mystery until we got my oldest son Liam’s autism spectrum disorder (ASD) diagnosis. As Adam and I learned more about ASD and Asperger’s Syndrome (AS), more and more pieces of Adam’s personality fell into perspective. Many of his actions and interactions made sense all of a sudden. We’ve found portraits of him all over the ASD books we’ve read.

As Adam read Emergence: Labeled Autistic (Warner Books, 1996) by Temple Grandin, he kept shaking his head.

“What’s up?” I asked.

“This is me as a kid,” he said. “Totally—from the pranks, to the sensory issues, to the anxiety.”

Well, well, well. Interesting indeed. I always knew something was a bit odd about the stories from Adam’s childhood.

He used to sit in his dark closet for hours. He liked to rock on his bed for hours just because. He had an elaborate fantasy world in his head that he’d inhabit for a long time every day. He was labeled “retarded” by his teachers in elementary school, but only in an informal way. His family jokes about his need to disappear at every family gathering, shrugging and dismissing it as “just Adam.”

He flunked most of middle and high school—bored, misunderstood, and rebellious—only to be admitted to Cornell Law and two other PhD programs later in life. He can remember any face, no matter that he saw it for just a short time (but he cannot read emotions very well). He cannot remember any dates, except my birthday and our kid’s birthdays (although he has to work for these). He often suffers from crippling anxiety, which got so bad during our 20s that I did all the driving for over a year.

Do these traits, with a hundred or so others, put him on the spectrum? Would he get an official diagnosis if he went to see a psychologist?

I think so and so does he, but the really intriguing question is: why bother?

John Elder Robinson, a writer who got an AS diagnosis at 40, notes in his engaging book be different: Adventures of a Free-Range Aspergian (Broadway, 2012): “Asperger’s explained so many things…My new knowledge of Asperger’s brought [my] memories into focus, and I saw how the differences in my brain had shaped the course of my life in countless subtle ways….As I moved forward with new knowledge and confidence, I started to see my life get better every day” (8).

Would the diagnosis do the same for Adam? Would it help our sons feel more accepted as they grow up—one with a much more severe form of autism and the other an unknown quantity at this point? Would it help Adam feel more comfortable in his own skin? Would it inspire others to get the diagnosis as well? Would it provide a compelling example of what someone on the spectrum can accomplish? Would it be an entrée to the realm of ASD that I can never access because I’m not on the spectrum? Would he be more qualified to speak about ASD with a diagnosis?

I don’t know. But, I suspect the answer to all of these questions is yes.

Would Adam’s life have been different if he had gotten a diagnosis early in life? He would have received some help in school, therapy to make him more social, and he would have been hounded to get out of his world and into ours.

Now, I know he was never so far into his world as many ASD kids are—my son Liam included—and I’m not saying that it’s a bad thing to make kids on the spectrum relate and interact. But the vibrant inner life that Adam enjoys as an adult was cultivated as a weird, quiet child who sat silently on his bed, staring into space for many hours each day.

Moving on to the really interesting questions—how would Adam’s teenage years have been different with a diagnosis? Would he still have been a social misfit who reacted to his differences with anger and rebellion? Or would his difference have been nurtured? Would he have spent his teenage nights at home playing the cello or writing books or something like that?

Would I have dated him if he were not my bad-boy boyfriend, but instead my special-needs
boyfriend? Would we have decided to have kids if we knew that his quirks had a clinical designation and a clear genetic linkage? Would I have missed out on having my children?

I don’t know.

All I know is that Adam is an amazing person, with or without the diagnosis. If he gets the diagnosis as an adult, I’ll support him. If he doesn’t, we’ll both know the truth of it.

That truth, plain and simple: he is more than the sum of these traits. Like every child and person on the spectrum, he is unique, worth getting to know, and perfect—just the way he is.

BIO
Jamie Pacton, MA, is a writer, professor, and mother to two young boys (one who is on the spectrum). She spends her free time reading, cooking, writing fiction, and enjoying her family. Visit her at www.jamiepacton.com.

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

The standard method for teaching a nonverbal person with autism tasks such as dressing or cooking is to provide a picture schedule that shows the steps of the task. This works well for many individuals, but some have difficulty linking the steps together. To learn a simple task such as making a sandwich, they have to see a person demonstrate the ENTIRE task, from start to finish, with no steps left out. If they do not see how the second slice of bread gets on top of the peanut butter they may not try to perform the individual steps because, as a whole, they do not make sense to the individual.Sandwichmaking is easy to teach because when the task is demonstrated the ENTIRE task is observed, and the end product – the sandwich – is concrete and has meaning to the individual.

This idea of “whole task teaching” is particularly relevant in the area of toilet training. One of the challenges with toilet training individuals on the severe end of the spectrum is that the individual may not know how the urine or feces gets into the toilet. The picture schedule shows the waste in the toilet, but it does not show how it got there. There are often more problems with teaching the person to defecate in the toilet compared to urination. This is because the individual has more likely been able to directly observe how urine comes out of the person and goes into the toilet. This is especially true with boys, but even girls can observe this. It is not as obvious an action – for either sex – when it comes to defecating. If seeing how the waste goes from the person to the toilet is left out of the teaching sequence, these individuals may not know what they have to do.

Furthermore, neurotypicals assume a picture is all that’s needed to help the child or adult link the elimination of bodily waste to the place where it should go, i.e. the toilet. But for many individuals that link is too broad a jump and does not “compute” in their brain. Those with severe sensory issues may not feel the sensation of having to urinate or understand how to bear down to defecate. These are intermittent steps that may need to be addressed for a successful toileting program.

Sometimes even demonstrating a whole task via visual teaching is not enough. Many individuals on the severe end of the spectrum have so many visual processing problems that they have to learn tasks by touch. One therapist taught a child how to use a playground slide by “walking” him through the entire task hand over hand with no steps left out. To understand how to climb the ladder and go down the slide the therapist stood behind the child and moved his hands and feet through the entire sequence: climbing the ladder, sitting on the slide and going down it.

Teaching how a foot is put into a shoe can be done in a similar manner. The therapist, hand over hand, guides the individual’s hand over the ankle and foot so the person can feel the foot, then feel the inside of the shoe so they can cognitively link how the foot could slide into the shoe. The next step, hand over hand, is to slip the foot into the shoe in one continuous motion, so the individual experiences the feeling of the foot going into the shoe and makes the cognitive connection through the tactile information being received.

Individuals on the more severe end of the autism spectrum can be taught to perform different actions, but we must not lose sight of the accompanying sensory issues that can impede their learning. In many cases, these sensory issues are severe and rob the individual of much of the “data feedback” necessary for learning that neurotypicals receive unconsciously. Whole task, visual and tactile-based teaching strategies can supply the extra information these individuals need in order to learn.

BIO
Temple Grandin is an internationally respected specialist in designing livestock handling systems. She is the most noted high-functioning person with autism in the world today.

Copyright © Autism Asperger’s Digest. 2007. All Rights Reserved. Distribution via print means prohibited without written permission of publisher.