Archive for May 2017

Monthly Archive

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.

Autism and Police: Staying Safe Together- This Month’s Autism 200 Class

This month’s Autism 200 Series class  “Autism and Police: Staying Safe Together” will be held Thursday, May 18, 2017 at Seattle Children’s Hospital in Wright Auditorium from 7 to 8:30 p.m.

These classes are designed for parents, teachers and caregivers. The topics associated with the majority of classes are applicable to all age ranges and for a wide variety of children diagnosed with autism.

With mounting tension across the country, creating a safe community requires collaboration. For individuals with autism spectrum disorder, learning to interact with police and first responders is critical. On the other hand, it is just as essential for police to understand autism and be prepared to respond effectively and safely to situations that arise involving individuals on the spectrum. The autism community must work together with law enforcement and the general public to ensure we are all safe together. This panel presentation of law enforcement officials, individuals with autism, families, and community members will discuss local efforts within police departments as well as strategies for individuals and families to promote safety for everyone involved. Instructor for this class will be Robin Tatsuda, MSW.

When Behavior is the Disability

 It’s OK to be mad, but it’s not OK to hit.  This is often the first instruction we tell toddlers as they seek to understand the world of confusing instructions, disappointment, and being told no. My son Arthur hits, kicks, scratches, and pinches people when he’s upset. These are startling words to read and difficult for me to write. Arthur is not a toddler. Arthur is a 17-years-young man. He was diagnosed with autism at the age of two.

We’ve had many highs and lows over the years. The highs are amazing – his first 3-word sentence at age 6, fully toilet trained at age 9, noticing him read for pleasure at age 13, and his sheer joy when exploring Google Maps.  He loves his family, our friends, his teachers, and his therapists.  Arthur brings out the best in everyone. He redefines what it means to be normal. He strives to make sense of his life, just like the rest of us. He is a great guy.

Let’s talk about the lows. Aggression, property destruction, and blow-out tantrums are about as low as it gets for us.  Everyday experiences can be powerfully overwhelming, frustrating, and confusing for Arthur.  Loud sounds, nonsensical rules, and confounding instructions make him feel overloaded. And when that happens he can sometimes lash out with a quick pinch, hit, or kick.  I know the triggers and know the signs leading up to it, but I’m his mother, and I know him so well. I can anticipate his actions…most of the time. Unfortunately, not everyone interacting with my son can spot the build-up to his aggression.  When Arthur becomes aggressive or destructive, time slows down and my vision tunnels. I scan for items that can be thrown, windows that can be broken, or the direction of the busy street he might bolt toward. I become stronger – ready to deflect, duck, and protect. Sometimes Arthur is so upset that he harms himself so I physically have to protect both of us.

Everyone feels bad when Arthur strikes but no one as bad as him. After an incident, Arthur has a look of fear and regret as if he honestly cannot control it. He will cry and say repeatedly, “I don’t want to be angry.” “I don’t want to hit.”

If a stranger hit me I’d be scared and furious. But in those moments when Arthur has completely lost his ability to control himself, I feel compassion and deep sadness. It’s difficult beyond words to watch your child become so upset that he harms others, destroys property, and injures himself.

The aftermath leaves Arthur and me completely drained. Arthur likes to decompress in his room. That’s when the fear sets in for me. Will this continue into adulthood? What if he hurts someone? What happens if the police are called? Will they know he’s disabled rather than a threat?  Will he be hurt?  Will this limit his opportunities, freedom, and dignity in life?

Impulsivity, emotional control, and inflexibility are hallmark characteristics of autism. They are the main reasons for my son’s challenging behaviors. Fortunately, years of therapy to address challenging behaviors have paid off. We have a much better understanding that behaviors happen for a reason. They are learned, and they can be addressed. We better understand the triggers that set him off, effective strategies to keep him calm, and what works when he experiences a serious meltdown. Behavior is communication.  As we’ve come to understand what he is trying to tell us, we are now able to get out of the house more. Like many parents with children who experience aggression, the fear of a meltdown can drive us into isolation, making us reluctant to leave the house, send our child to school, participate in community events, or even go to the grocery store. 

Aggression, self-harm, property destruction, and other challenging behaviors are some of the most difficult aspects of autism. Fortunately there are Applied Behavior Analysis (ABA) strategies that are effective at addressing challenging behaviors. In the next blog, Karen Bearss PhD, a clinical psychologist at Seattle Children’s Autism Center will focus on parent training to address problem behaviors for individuals with Autism Spectrum Disorder. She explores many of the same strategies that helped us understand and address Arthur’s problem behaviors and best of all, Arthur is happier and possesses a sense of sovereignty.

Finding comfort and camaraderie with other parents has helped and this wallet card has also come in handy for me over the years.

 

 

 

 

 

 

   

 

Mindful Monday – First Taste of the Day

 

Here’s a mindfulness exercise from Donald Altman in One Minute Mindfulness:

 

 

 

Think about the first thing you tasted this morning, perhaps a sip of coffee or minty toothpaste or cereal with milk. What, if anything, do you remember about it? If your answer is “nothing”, you’re in good company. As rushed as we are in the morning, it’s easy to go from one autopilot moment to the next without paying attention. Set an intention for tomorrow morning to pay attention to that first taste. Sip and savor instead of slurp and swig! This small step will help you as you develop a mindset of paying attention to what’s happening in the moment.