The Autism Blog

The Autism Blogcast with Jim and Raphe – December Edition

News Flash: The December edition of The Autism Blogcast, featuring autism experts Raphael Bernier, PhD and James Mancini, MS, CCC-SLP.

In an effort to keep you up to date on the latest news in research and community happenings, we welcome two of our favorite providers best known as Jim and Raphe, the autism news guys.

These two have too much energy to be contained in written format so our plan is to capture them in 2-5 minute videos that we’ll post the first week of each month. We welcome your questions and comments. Tell us what you think of our dynamic duo!

In this edition of the Blogcast, our reporters provide a special report from China. 

A Social Story From Seattle Children’s Autism Center

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December. A month that for many brings holiday cheer, visits with family and friends, bargain shopping, twinkling lights, festive carols and songs, new memories, extra fun and novel experiences.

For others, it is a month filled with overwhelming family gatherings, endless shopping lists, crowded stores, bright lights, overplayed jingles, disrupted routines, and extra stress and chaos. In effort to support your children, and family, during the holiday buzz, try reading the social story “Celebrating the Holidays.” This interactive story allows you to talk with your child about the holiday(s) your family celebrates, and to write in your specific family plans to help prepare your child. You can download the holiday powerpoint presentation here Celebrating the Holidays Social Story.

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In His Own Words: An Interview With Trevor

bannerWe’d like to introduce you to our guest for today’s blog. Trevor is 23 years old and is the Media Director of his family’s business, Consetta Group.

 

 

Lynn: At what age were you diagnosed with ASD?

Trevor: At age 5

Lynn: Do you recall what and when your parents told you about your diagnosis?

Trevor: It was more I heard here and there growing up from my parents that I had autism, except for years I didn’t even know what it was. So the fact that I knew I was autistic had no effect on my childhood.

Lynn: Did you participate in any therapies such as ABA or speech or occupational therapy?

Trevor: Yes, I had speech therapy when I was little, and from Kindergarten through sixth grade I had extra accommodations through my school to help with social skills. I had these same types of accommodations in middle school and high school to focus on my academics, and in college I had occasional accommodations to help me in test taking.

Lynn: Did you participate in special education in school? Were you in an inclusion classroom or a contained classroom?

Trevor: The special accommodations I mentioned above during grade school were set in a separate room from my usual classroom, and was with one or two other students on the spectrum. I had none of this in middle school, but in high school I was placed in a special class to help students struggling with their grades.

Lynn: What has been the most challenging part of ASD for you?

Trevor: Making friends. It was never a problem for me in middle school or grade school, as I never had much of a desire to make friends. It was in high school and on to today where it became a desire and struggle for me.

Lynn: What do you think helped you the most with this challenge?

Trevor: It was mostly a matter of trial and error. The more people I met with, the better idea of who I wanted to be friends with. Eventually the right friends came to me, and they helped me to learn what being a good friend is about.

Lynn: Do you know young adults who have severe ASD?

Trevor: I know of several young adults with severe ASD, but none well enough to give a knowledgeable description about.

Lynn: If so, how do you think “your ASD” and “their ASD” are similar or different?

Trevor: Everyone’s story is different. I have never met two cases of ASD or Down syndrome that were exactly the same. One may be nonverbal, one may be more independent. It’s important that we not categorize between levels of functionality, because they are limitless.

Lynn: Do you think you have an understanding of how someone with severe ASD experiences/processes the world?

Trevor: I honestly do not. In order to know how someone experiences the world, you have to step in their brain for a day.

Lynn: What do you think about the idea that ASD isn’t a disability but a difference in thinking or personality?

Trevor: I think that it is unacceptable how few people grasp this concept. While people with disabilities may not be able to do commonly acceptable tasks such as writing, talking, or living independently, they still have so many other abilities involving the mind that others would only dream of having.

Lynn: When you think back on growing up, what do you think the adults in your life got right?

Trevor: That we need to respect and obey our authorities, for they are our role models.

Lynn: When you think back on growing up, what do you think the adults in your life got wrong?

Trevor: Their priorities in what I need to learn in school were all wrong. They try to say, “If you don’t do well in this subject you’ll never get a job!” But from what I now can tell, there is a profession for everyone big or small, even if it’s just putting labels on jars like I heard one person with ASD does for a living.

Lynn: There’s so much about ASD that we still don’t understand. What is your hope when it comes to current efforts at understanding what causes it and how we help those affected by it?

Trevor: We should not be worried about what causes it, because that immediately sets us into a mindset that autism is a curable disease. Our focus must be on how we can help children with ASD to know what their strengths are, and how to use them. I also would like to see the educational system accommodate itself to fit in with what the student is genuinely great at doing.

 

Ask Dr. Emily – The Function of Stealing and Cognitive Rigidity

Welcome to the November edition of Ask Dr. Emily!

We often receive questions that we want to share with all our readers. To help with this, Dr. Emily Rastall, a clinical psychologist at Seattle Children’s Autism Center, will share insights in a question and answer format. We welcome you to send us your questions and Dr. Rastall will do her best to answer them each month. Send your questions to theautismblog@seattlechildrens.org.

 

Q: My name is Chris, and I work in a high school with our ASD student population (high functioning). This past week I’ve dealt with two separate students involved in theft (a teacher’s laptop and the master school key). I was wondering if you could comment on the typical function of stealing for people on the spectrum? Is it common? Neither student was able to express why they had stolen their respective items, and both were aware of the negative consequences associated with getting caught. I’m finding it difficult to come up with a contingency plan with them when I can’t identify the function of the behavior we’re trying to replace. Any resources you think might help would also be very appreciated!

A: Thank you for your question. I’m not sure there is a universal “typical function” of this behavior for individuals with ASD. However, there are some special considerations to make when looking at the function of this behavior in children with ASD. For example, executive functioning skills in kids with ASD are often less developed than their typical peers, so they have a more difficult time thinking about consequences and/or resisting impulses. Though they may know the consequences, in that moment when they see something they want, their brains aren’t thinking about those consequences and aren’t able to resist the impulse to take.

In addition, we know that kids with ASD often have a hard time considering the perspective of others, so they are less likely to think about how taking an item will affect others. Also, items may be increasingly appealing if they fit within the restricted interests of a child with ASD.  Finally, kids with ASD may have a harder time communicating their needs, so taking items is a quick and easy way of “bypassing the ask.”

No matter the purpose, it’s not uncommon for kids to have a hard time explaining why it was that they took a particular item; I often hear, “I don’t know.” or “I just wanted it.” The truth is, they may not actually know or they may not have the words to describe it.

Regarding behavior planning, a functional behavior analysis (with someone who knows ASD well) is probably where you want to start. As far as intervention, broadly, just like for all humans, behavior changes are made via reinforcement of “the right” behaviors. Thus, we might start by praising and rewarding impulse control behaviors, like raising a hand in class (“I could tell you really wanted to speak out, but you raised your hand instead.”) and/or asking for desired items/privileges (“I appreciate you asking to use my pencil before taking it from my desk.”).

Another option might be to reward the absence of stealing behaviors. We might also teach scripts for how to ask for things and/or how to negotiate politely and effectively; when scripts are used, praise and rewards are given to promote continued use. For more resources about behavior management in the classroom, the following books might be helpful:

Positive Behavior Support in the Classroom (Jackson and Panyan)

A Work in Progress:  Behavior Management Strategies and Curriculum for Intensive Behavioral Treatment of Autism (Leaf and McEachin)

Coaching Students with Executive Functioning Deficits (Dawson and Guare)

 

Q: Thank you for your informative blog. It has answered so many questions. I was wondering if a friend’s fixation or obsession and competiveness are common in high functioning autism. My 11-year-old son has a mate with Asperger’s/autism (many titles here in Oz), that has a real fixation with being with my son constantly and having to have whatever he has and do whatever he does. It was fine when they were toddlers, but lately my son has found it tiresome and wants to form other friendships. As a mum I’ve suggested not catching up as often and both adding new friends, but as they attend the same school and sporting activities, this can be a challenge.

A: Thank you for your question. One of the primary diagnostic criteria for ASD is what we call “cognitive rigidity.” This might manifest as “getting stuck,” having a hard time making changes, or becoming overly focused on items, ideas, and/or people. As the social expectations increase throughout development, it is not uncommon for kids with ASD to have a hard time “keeping up with” the changes that need to occur to maintain friendships. I also want to mention, though, that it’s not uncommon for all kids to go through changes in their friendships, the root of which could be any number of things: Changes in location or school, changes in interests, family changes, personality preference changes.

It sounds like your son may be experiencing what is a normal part of growing up—shifting and changing of friend groups and interests. Luckily, this is a life lesson in kindness, tolerance, and inclusion. We want to teach kids that it is okay to outgrow friends, but never to become unkind or purposefully exclude others. While your son and his friend may move on to different friend groups, we want to encourage continued care, tolerance, and empathy for one another (they will continue seeing a lot of each other at school and extracurriculars, after all).

Bottom line: We want to help your son branch out, but also to continue showing kindness and compassion for a longtime friend. In order to improve variety and also remain inclusive, you might encourage your son to invite other peers to play with him and his friend on the playground or during play dates.

In the spirit of setting boundaries, your suggestion to support your son in kindly asking for some space is a good one. You might encourage your son to pursue other extracurricular activities that may open the door to a wider variety of potential friends, with whom play dates can occur. Play dates that do occur with your son’s friend, could include other peers or could be less frequent, shorter, and/or activity-focused (pumpkin carving or cookie making). It may be that, with your son less available, your son’s friend finds other peers that he likes to spend time with too.

This is not an easy transition, but one that most, or all, kids go through at least once. Your continued support and coaching will help your son make this transition kindly and empathically.

Autism and Coping Tools for Parents- Part 7 Sweet Surrender

Welcome to Part 7, our final blog in a series of parent coping skills. Surrender. What a loaded word.  It implies giving up, laying down your arms, losing the battle.  Surrender  was the last thing on my mind when my son Arthur was first diagnosed with autism at age 2. 

 

Every turn from the moment he received the diagnosis was an epic battle. Fighting for ABA coverage, jockeying for a “good” school placement, baffling over why state and federal disability services were frozen, and poring over information about this complex disorder. What did it mean for Arthur and our family?  Not to mention grappling with my own grief and white-hot fear about my young child’s future.  Doctors reminded me, prognosis was impossible.  At 18, will he be able to tie his shoes or drive a car?

Surrender? Are you kidding me? I was shaking my fists, stomping my feet, rattling cages, pressing 0, and taking names.  I was a fierce warrior for Arthur.

The complex details, denials, misdirection, confusion, and inability to know if what we were doing was making any difference left me overwhelmed, defeated, and depressed. All this energy, pain, and struggle to meet his needs and our little guy seemed to go more inward with each passing day. 

Before I had Arthur, my friend Diane and I would call each other daily to talk about our daughters, both infants at the time. I’d still be in my bathrobe at 2:00 p.m. reeling from a morning of fussy baby, poopy diapers, sleep deprivation, and wondering how yogurt got on the ceiling. We’d share honest moments about how incredibly hard this new mom thing was and how our 40 hour a week jobs were so much easier.  Our conversations predictably evolved to how beautiful and amazing  this new little person was and how we both just need to surrender to the Cheerios gathering next to the dust bunnies in the corner.  We’d end our regular phone conversations with a simple “surrender” reminding us both to turn towards and embrace our new lives.

So a few years later when I was told our new baby boy had autism, I wondered how I would apply my once-effective surrendering strategy when fighting seemed like the only option to get anything done for him. It was impossible to feel calm or surrender to anything.  I was in a constant state of urgency.   

Intellectually, I knew it made sense to find peace in the face of so many unknowns. Why break myself against what I clearly could not control or change.  I knew I’d be happier if I just let go of my tight grip on impossible circumstances.

My anger would not make my insurance plan cover ABA. My despair would not help Arthur begin using language and my fear for his future was getting in the way of me enjoying him in the moment. 

Unfortunately, I could not close my eyes and will surrender to just happen. So I began my quest to accept what I could not change. I read books with titles like, Go to the Places that Scare You and Comfortable with Uncertainty. I soaked up what I could learn from other parents and adults I met with autism. I was beginning to see that the peace that comes with surrendering surfaces with time and deliberate attention-as the end-result of a long and reflective process – along with some hard work. I also learned I might not achieve permanent surrender but I could strive for moments of it.

Surrender does not mean less work or halting efforts to help my child reach his potential. I will continue to seek effective therapies, interventions, appropriate education, community participation, and I will continue planning for his future.   I just might be a little more “chill” about it.    

I pause, appreciate, and celebrate my son’s unique personality and the many gifts he offers the world.  There is always a rich reward when I pause. For example, tonight, as I write this, Arthur is in his room singing along with Karen Carpenter. What 17-year-old boy in America listens to The Carpenters? Mine does and he’s belting out Close to You at this very moment. It’s delightful. He’s delightful. Moments like this give me the rocket fuel I need to propel my way through the inevitable work it takes to meet his complex needs. 

Surrender also meant I stopped riding his challenges and bad days so closely. I can feel sad for him and pain when he suffers but ultimately, it’s his life. It took me years to develop what I have come to call a loving healthy disconnect.  It’s much easier with typically developing children but I would argue just as important for our children with developmental disabilities. I need to be a steady bow. I will need to let him go. That arrow needs to fly!  Easier said than done. I’m still working on that one.

dogLastly, there’s an object in my kitchen windowsill. I see it every time I do the dishes, reminding me what surrender means to me. That object is a little Fisher Price dog that I found in my son’s shoe when he came home from school when he was 5 years old. That beat-up wooden figure had been in his shoe all day. Arthur did not have words at that age. No one knew. No one could help. It must have been so uncomfortable. His toes were bruised. He suffered and I could not help him.  I cried because it represented so much about the entire journey with autism up to that point.  Later that night as he took his bath, I looked at my beautiful and unique little boy enjoying his bubbles. He was ok. More than ok! He seemed perfect at that moment and I felt pure joy.  So, the dog went in the windowsill to remind me to look beyond the struggle – even his struggles – to let go of what I can’t control.

I will not always know how to help him. He might not continue to improve, he will face hardship, others will care for him, and I’m pretty sure he will not be a Major League Baseball player or a Supreme Court Justice. I’ll do my best and that won’t be good enough sometimes. And that’s ok. I surrender. Wholeheartedly.