The Autism Blog

A Tribute to Charlie Burnett

It’s hard for me to recall where I first met my friend Charlie Burnett. It may have been in an office visit with his then young daughter Alyssa, or it may have been at a charity fundraiser. Through the years, and whatever the setting, Charlie was always kind, soft spoken and thoughtful, and never wavered from his principal mission – to do what was necessary to see his daughter Alyssa happy.

 

Alyssa is now a beautiful 30 year old woman with an infectious smile that lights up a room when she enters. Alyssa has lived with a developmental disability – in her case, a form of autism that prevents her from using words, and is associated with other medical issues including intractable epilepsy. Charlie and his wife, Barbara, have been first-hand witnesses to the challenges facing people with developmental differences – in everyday life, in school, and even in institutions such as Seattle Children’s Hospital.

A story I will always remember is recalled by Charlie and Barbara, an occasion a number of years ago (well before we launched Seattle Children’s Autism Center) when Alyssa was admitted to Seattle Children’s through the emergency department for a change in her behavior. It was clear to everyone that something was physically wrong with Alyssa, but because of her communication deficits, she expressed herself through violent behaviors. The hospital personnel were ill-equipped to deal with the situation. With Charlie and Barbara’s persistence, Alyssa ultimately received the necessary medical care, but in the process it became clear that much needed to change and improve in our system of how we were providing care and support for individuals and families impacted by autism.

Charlie was not the type of person to sit around and accept these societal failures. Recognizing his position of influence as a Senior Vice President at Costco (Charlie founded the pharmacy division for Costco), he and Barbara took aim at one of the biggest gaps of support for people with developmental disabilities. In 2004, along with a close-knit group of friends and advocates, Charlie and Barbara started the nonprofit Northwest Academy for Exceptional Children, later renamed Tessera. Tessera’s mission was to provide lifelong learning experiences for individuals with autism and other developmental disabilities so that they might realize their fullest potential.

In 2008, Charlie and Barbara took charge with influential voices in the ears of Seattle Children’s leadership – supportive voices that helped us take the leap of faith necessary to see the Seattle Children’s Autism Center become a reality. This was no easy feat at the time – I can honestly say, that without the commitment of the Burnett family, the likelihood of us launching the Autism Center would have been seriously compromised.

In 2014, Charlie and Barbara again changed the face of services in our region for people with autism. The Burnetts and Tessera donated $7 million, including Tessera’s space in Bothell, to launch Seattle Children’s Alyssa Burnett Adult Life Center. In collaboration with other community providers, it offers year-round classes for adults with autism spectrum disorders and other developmental disabilities, helping to fill the enormous gap in services that occurs when other programs’ enrollment ends at age 21. Charlie and Barbara’s combined philanthropic commitment, along with Tessera, now totals about $8.5 million and is nothing short of incredible. While it was not easy to plan for and launch the center, once again, the vision of Charlie and Barbara to see a better future for Alyssa and others living with developmental disabilities proved correct. We are grateful for the Burnetts’ passion and generosity – and honored to help carry out our shared vision to provide critical resources for adults with autism.

I know if Charlie were reading this, he would deflect these successes to those around him – to Barbara, to his close friends, including Ron Yutrzenka and Mike Smith, to Costco, and to the staff at Seattle Children’s. He would reflect on the driving purpose of his work and these accomplishments – to create a better world for his beautiful daughter Alyssa. Thank you Charlie – you succeeded. I will miss you, I will always remember the sacrifices you made, and I will use your love as inspiration for the work we continue to do – for Alyssa, and for all of the children and adults that need us as their voice.

Mindful Monday – Saying Thanks

When I had my first child, my mom signed me up for a subscription to Reader’s Digest, telling me that it’d be a long time before I’d have time to read anything longer than what I’d find there.

She was so right about that! Twenty-two years later, she still gifts me this subscription and I’m finding lots of good mindfulness material there to share with you.

In the October 2016 edition, Lisa Fields writes The Goodness of Gratitude.  In it, she tells us that we are living increasingly in a “me-focused world” of social media where saying thanks may be a dying practice. Say it ain’t so!

Take a moment to recall how it feels when someone does something kind for you. It may be as simple as holding open a door for you as you both arrive at the same time. Now take a moment to recall the feeling you get when you express gratitude for both the small and more significant kindnesses.

So whether it’s a quick but heartfelt thanks to the stranger on the bus or a surprise thank-you post-it note left on the mirror for your loved one, set an intention today to say thanks to at least one person. Then do it again tomorrow and the next day and the next.

The Autism Blogcast – June Edition

News Flash: The June 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 discuss a possible explanation for the 4:1 male to female ratio bias and subsequent research. Also discussed is the importance of increased representation of the autism community to help drive science and inform school and community forums of the latest findings.

 

Ask Dr. Emily – ASD and Adulthood

Welcome to the May 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: I have a 16-year-old with autism who is “high functioning.” As a parent, how do you get a teen to realize they are going to be on their own? How do you help them see that the things that you try to teach them at home are going to be things they will need for the rest of their lives?

A: I think you’ve asked the ultimate parenting question when it comes to raising teens. This is something most parents of teens struggle with, so I know you’re not alone. Add autism into the mix, and it can be a real challenge to prepare a teen for the “real world.” Listen, all teens (and especially those with ASD) have challenges with executive functioning; that’s the thing that happens in your frontal lobe when you plan ahead, think of the future, think critically and logically. Science tells us that the frontal lobes of adolescents are going through a lot of changes, which causes them to function at a sub-optimal level. In fact the frontal lobe does not fully develop until the age of 25! We also know that autism can affect how quickly parts of the brain (the frontal lobe included) develop over time. Your child with ASD may need more time for parts of their brain to fully develop. Translation: Your child with autism may need more time to become fully independent.

What can parents do to support their child’s independence while the brain is developing? The answer–we (the parents) will have to act as their frontal lobes while theirs are “offline.” For example, we set expectations and limits around things like screens, social media, sleep, nutrition, freedom, driving, hygiene, chores. We assist kids with time management; we help them make and execute a plan, provide visuals to help them see their progress, and offer rewards for task completion. Ultimately, teens don’t like the limits and “meddling,” but it’s one of those necessary evils to help them develop good habits for the future. Over time, we slowly offer more and more freedom and take away some of the supports. By the time your child’s brain is fully developed, they will have the skills and habits you have helped them form and they will have a fully developed brain to help them use these skills effectively. At this point, we won’t expect them to understand WHY we put those boundaries in place or to appreciate the life skills we are teaching them. That comes later…much, much later.

Q: Our son graduated college in Aug 2016. He is living at home working part time, lacking a social group, anxious, and stressed, which I’m sure we are adding to. He does not know that he has autism. I believe we’ve been trying to fit a square peg into a round hole for years. How do I tell him he’s on the spectrum?

A: It sounds like you know it’s time to have this challenging, but important, conversation with your son. My guess is that he has wondered (or is currently wondering) why things that seem easy for others are harder for him. In my opinion, honesty, along with love and empathy and compassion and support, is the best policy here. You might let him know that you have something important you’d like to talk to him about and then check in with him about a time that is generally a good time for him to talk. I would also go into this conversation with as little expectation about the outcome as possible and with resolve to remain calm and compassionate no matter what his reaction is. We can’t begin predict how this will feel for him. He may be relieved to finally have an answer. He may not agree with the diagnosis and ultimately reject it. He may feel a number of things. The important thing to convey is that you love and accept him no matter what and want to help him however you can. Good luck to you and your family as you navigate this transition into “knowing.”

 

Parent Training to Address Problem Behaviors of Youth with Autism Spectrum Disorder

In my work with parents of children with ASD and co-occurring challenging behaviors, I often hear the following: “I feel like I am walking on eggshells, worrying that the next thing I do is going to set my child off”; “My child’s behavior feels very unpredictable; when he is set off, it feels like it is coming out of the blue,” and “All those strategies that worked with my other child(ren) don’t seem to work with her.” And parents are correct!

 

At first glance, their child’s behaviors appear unpredictable and explosive, which often results in parents understandably avoiding confrontations or placing demands that might set the child off. The good news is we have a lot of research supporting the use of strategies based on the principles of applied behavior analysis (ABA) to help unravel the mystery surrounding a child’s behavior and to develop treatment plans that can successfully reduce these challenging behaviors. When starting treatment with families, I ground the journey with Three Key Concepts:

 

  1. Behaviors are learned. This is not to suggest that a parent has set out purposefully to teach their child to hit others, for example, but rather the hitting is the result of the child learning that hitting “works” for them to get a want or need met. For a classic example, consider a child who is yelling in the checkout aisle of the grocery store because he wants some candy on display. His mother may initially say no, but when the child continues to scream, the parent may finally give him the candy. This choice makes sense in the moment because it stops the behavior, the child is now happy and the mother no longer has to manage a tantrum in public. But this might cause problems in the future because the child has ‘learned’ that screaming gets candy. The good news is that if a child has learned to hit others, whine, or tantrum, he can also be taught new, more appropriate ways to behave.
  2.  Behaviors are forms of communication. Children with ASD often have difficulty with communication — they may find it hard to tell you what is bothering them or may not have a good way to ask for something they want. Even children who are quite verbal can have difficulty “using their words” when they become frustrated or angry. Children with ASD whose communication skills are limited may learn that their behaviors communicate their wishes very effectively. So, when your child is engaging in a problem behavior, an important question to ask yourself is, “What is my child trying to communicate through this behavior?” A tantrum could be saying, “This is too hard.” Screaming could mean, “Leave me alone.” Hitting could be communicating, “That’s mine. Give it back.
  3. Behaviors serve a function. A child may act out in order to escape or avoid a situation or demand. For example, a child having learned he will be sent to the principal’s office might hit another student in the classroom in order to “escape” the assignment just given by the teacher. A child also may engage in a problematic behavior to get attention. For example, a child might bang his head as he has learned that this will quickly get his father’s attention when he is talking on the telephone. A child may learn his behavior gets him what he wants. For example, a child may scream loudly when his mother turns the TV off because he has learned that she will turn it back on to stop his screaming during his baby sister’s naptime. Finally, some children engage in behaviors because they are pleasing to the child or are “automatically” rewarding. For example, a child may flap his hands because he finds this pleasant to do when excited. We often consider these behaviors as being motivated by factors such as sensory input, reduction of internal anxiety, or perhaps just being pleasing to the child.

When it comes to treating challenging behaviors, the starting point will always be trying to understand the purpose or “function” of the child’s behavior. To illustrate this point, consider a child who is disruptive while doing class work – making paper airplanes, talking loudly to classmates, making noises – and the teacher sends the child to the principal. This child may be disruptive because he is trying to escape from doing class work. While the teacher’s consequence is logical, it will not be effective in reducing the behavior in the future because the child succeeded with escaping from class work. Take the same exact behaviors and teacher response, but this time the function of the child’s behaviors is to get attention from his classmates. In this case, the teacher’s consequence of removing him from the classroom should help to decrease the disruptive behavior because she is targeting the correct function of the behavior – seeking attention. This is why it is so important not to just focus on the behavior when thinking of how to treat problem behavior. It is more useful to target the function of the behavior!

Creating a treatment plan is the hard work ahead, figuring out which specific strategies will address the function of the challenging behavior. As you move forward on that journey, keep in mind that any new strategy may take some time to work as your child is learning a new behavior! Consistency, predictability, and follow-through are the keys to success. Your child will learn to accept new rules when he sees you responding the same way every time.

To learn more about addressing challenging behavior from Dr. Bearss, check out her Autism 204 talk from last month.