Archive for August 2016

Monthly Archive

Ask Dr. Emily- Dealing with Major Life Changes and Predicting Outcome

Welcome to the August 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: While this is an absolutely wonderful article for daily activities, I am wondering if there is an article of the same level of information for major life changes. My son is 18 and is high-functioning autistic, OCD, anxiety disorder as well as ADHD. We recently moved into a new house, school ended (he is homeschooled), his brother and sister-in-law moved into our home with our grandson, and he just had another surgery that resulted in a pulmonary embolism and a 6-Day Hospital stay. Needless to say, he is very upset and exhibiting aggression as well as temper tantrums and wild mood swings. I have tried spending extra time with him and validating his jealousy as well as his anxiety. He has a tendency to go nonverbal when his stress becomes too much, He not only has done this but has started his tics again. Please help if you have any ideas on what we could do for him.

A: Let me start by acknowledging how much you and your family have been through recently.  As we know, humans, in general, like to know what is coming—what is next. Children, in general, respond to change and/or major life events (like loss, moves, change in school) in various ways; responses can include irritability, despondence or withdrawal, challenging behaviors (such as noncompliance and/or aggression), and/or emotional lability (e.g., tearfulness, outbursts). Children with ASD, specifically, may also demonstrate increased repetitive behaviors, increased sensitivity to the environment, outbursts, or aggression.

So how can we help kids (and children with ASD, in particular) through some of these major life changes? Many of the strategies recommended for day-to-day activities (mentioned in a prior blog) can also be helpful for big life events. I am encouraged to hear you mention more one-on-one time and validation as strategies you have tried; these are great relationship builders and can lead to positive outcomes. In addition, if you have time to prepare for life events, using social stories, pictures, practice, and preparatory exposure can be helpful. In addition, allowing extra time (if possible) for adjustment can be beneficial. We also want to provide as much structure as is possible (e.g., checklists, visual schedules, breaks). In addition, it can be helpful to keep as many things the same as is possible. For example, if changing schools, keep the same backpack, lunch items, and/or morning routine. If staying overnight in the hospital, having blankets/pillows/stuffed animals/foods from home can help to ease discomfort.

Ultimately, even when you go to great lengths to ease difficult situations, change in routine and major life events are difficult to cope with–period. A little understanding (and reframing our negative thoughts to more tolerant ones) can go a long way. Parents, don’t be afraid to ask for what you need in terms of support, too. In the end, children look to us for feedback about how to feel about situations. The more support we can get to cope with our own emotions, the better off everyone will be.

Q: I have a 5-year-old daughter on the ASD spectrum. She can repeat what you say (though not clearly) and has mastered some questions. She will also answer when asked a question (like, “What’s your name?” or “How old are you?”). Do you think she will speak spontaneously (i.e., communicate on her own) someday?

A: While I cannot predict outcomes, there are some good indicators out there that are associated with improvements in language functioning. First, we know that early evidence-based intervention (like speech therapy, behavioral intervention) often leads to more positive outcomes in language and overall functioning later in development. Second, we know that language skills build on one another. So mastery of early language fundamentals (like babbling, word approximations and single words) can lead to more sophisticated language skill development (like phrase speech, sentence speech, and spontaneous language more broadly). Finally, we know that using visuals (like pictures) to assist individuals in communicating can lead to improved communication outcome.  Bottom line, continue providing therapeutic  support for language growth, and she will show us what she can do.

 

Autism and Coping Tools for Parents Part 4: Reframing

Katrina and I first met Susan and her family in a parent support group here at Seattle Children’s Autism Center. Since then, we’ve observed her skillfully demonstrate a number of coping tools when challenges arose. Today we share how reframing has helped with adversity in her life.

 

 

Q: How do you define this parenting tool?

A: For me, Reframing is a parenting technique that means intentionally choosing my frame of reference.  It is important for me to view my parenting experience in relation to the person my son is rather than the person I thought he might be.  Before my son was born, I had ideas about what I would teach my child and what we would do together.  Those ideas assumed that my child would be typically-developing.  That turned out to be the wrong frame of reference.  I needed to think about hopes, goals, expectations, and celebrations that used my son, as an individual, as the reference. I would call this a child-centered framework.

Q: How did you discover this tool for parenting kids with ASD?

A: My brother and his wife have been my role models for using a child-centered framework for parenting. They have two typically-developing children, and they always honored their children’s unique personalities and looked at parenting as an opportunity to get to know their children and nurture and guide them.  They did not try to mold their children into some preconceived notion of success.

Q: How has this tool lessened your stress or made life a bit easier for you?

A: By reframing my parenting with a child-centered framework, I can celebrate my son’s strengths, which include a great sense of humor and a relentlessly positive outlook. I can also help him with his challenges, including repetitive scripting and slow academic progress.  Looking at our journey through the lens of my son’s unique personality and combination of strengths and challenges, I can see that he has steadily grown and developed.  Rather than seeing my parenting as continually failing to achieve the milestones of typically-developing children, I can see my parenting as supporting my son’s individual progress.

This does not change the fact that I sometimes long for the milestones celebrated by parents of typically-developing children. The community standards for the academic, social, and behavioral progress of typically-developing children do not apply to my child.  I go through cycles of that being sad and disorienting.

Q: Did you find that the more you used this tool, the better you got at it?

A: I suppose reframing has brought me to an important realization.  It has led me to think long and hard about what it means to have a “good” or “successful” life.  The things that have made me feel that my life is good or successful have been friends and family, good health, meaningful work, supporting my community, and enjoyable hobbies.  By that measure, my son’s life is good and successful.  Supporting and empowering him to continue to have a good and successful life is the focus of my parenting.

Q: What else would you like us to know about this parenting tool?

A: Reframing does not mean denial.  As I said, the fact that the typically-developing framework does not apply is still sad and disorienting sometimes. Reframing, for me, simply means viewing my parenting through the lens of the person my son is and with a focus on doing my best to make sure he has a good and successful life.

We’d like to thank Susan for sharing her coping tool with us and invite you to do the same. When we help others, we help ourselves.

Education Opportunity – Certificate Program through the University of Washington

Certificate3About a decade ago Dr. Felice Orlich and Dr. Raphael Bernier were discussing the challenges facing the autism field because there just weren’t enough experts out in the community to support families affected by autism. So, Dr. Bernier, while a doctoral student at the University of Washington, applied for and was awarded a Huckabay Fellowship to support his efforts to develop a graduate level educational program focused on autism. After a few years (there were lots of other things going on at the time…finishing graduate school, doing residency at UCLA, setting up a research lab, etc, etc), Dr. Bernier was able to implement this program through Professional and Continuing Education at the University of Washington.

The Certificate Program, Autism Studies: Theory and Practice, as it is now named, is now in its third year. The first two years were very successful and the team of instructors is enthusiastic about this third year.

The program is a 3 course, graduate level certificate program that provides comprehensive education about autism spectrum disorder from both the scientific and practical perspectives. Over the course of the year students explore how cutting-edge research informs our understanding of autism and the most effective approaches for autism treatment and education. The program is designed for those who live with, work with or support people impacted by autism spectrum disorder.

Each of the three courses is provided either in classroom format or an online format for individuals unable to attend in person on the Seattle UW campus. For students attending class in person, you can engage face to face with your classmates and instructors as part of a highly interactive curriculum. Assignments and other course materials are delivered through Canvas, a web-based learning management system that also serves as a communications hub. For students attending online, Courses are streamed online in real time from the classroom. You interact with your instructors and fellow students via chat, using Adobe Connect web conferencing software. Assignments and other course materials are delivered through Canvas, a web-based learning management system that also serves as a communications hub.

For more information about the program .

Or, watch this short video.

What started as a thoughtful conversation between a student and mentor nearly a decade ago has transformed in the past few years into a cutting-edge educational program that helps bridge our understanding between science and practice—and all focused on autism.

 

Autism and First Responders

 

 

 

PoliceLast week I received this comment on our blog about Dads and Autism:

“Ben’s Dad here. I really connected with the above article and others’ reaction when they got the diagnosis. I think my concern for my son was (and still is to some extent) about his safety. My son is really high functioning, but when he was first diagnosed I heard of all kinds of horror stories of kid with autism eloping. I had a friend whose son had autism and they had to put an alarm on the door because he would leave the house at night. They said they found their son one night on the entrance to a freeway. As my son began to grow and develop I became less concerned because he seemed to cope well with change and could adapt. Now that he is 11 my main concern is his interaction with others especially the police. My son is African-American and my concern is that if he is approached by the police and they request something of him (i.e. put your hands up, freeze, etc.) and he is unable to understand he may be perceived as resisting. I continue to guide him and instruct as best as he can comprehend, but I am still concerned for his safety and well-being emotionally and physically. Thanks for allowing me to share.”

The next day my colleague Katrina shared with me a nerve-racking video of a teen with autism and his behavior therapist in a tense situation with police in Florida. The young man had run away from his group home and his therapist went after him. Cell-phone video shows the therapist identify himself and the client, follow police instructions to lie down and put his hands in the air, explain that the teen had a toy truck in his hand. The teen doesn’t respond to the therapist telling him to lie down too as instructed by the police. The therapist is shot three times by police and the teen is handcuffed and taken away. The worst nightmare for many a parent of a teen with autism.

What can we learn from this incident? Is there a way to avoid or prepare for something like this?

While there’s no way to prepare for every possible incident, there are steps parents can take to increase awareness. When our daughter was young, she would oh-so-stealthily sneak out of our home to neighbors’ homes. She knew exactly where Miss Linda’s cookie jar was. We made a point of getting to know our neighbors and asked for their help if they ever saw her outside of our home without an adult. For older kids, particularly young adult males, it may be a good idea to get to know the local first responders in your area. I know several parents who are on a first name basis with theirs. If your child lives in a group home or supported living, you might want to make sure staff have a recent photo and information sheet about your child at the house, in the car, and in their backpack. For more on safety ideas, check out the following:

Smart911 allows you to develop a detailed profile of your family members that pops up when a phone linked to it is used to call 911.

ID cards

The Big Red Safety Box

Booklet for First Responders

Here’s one mom’s story from the Seattle Times.  

What measures have you taken to keep your child safe and to inform first responders of their diagnosis and behavior? Share your ideas and stories with others!

 

Transition to Adulthood-Social-Sexuality Education for Young People with Autism- This Month’s Autism 200 Class

apple1

This month’s Autism 200 Series class “Transition to Adulthood-Social-Sexuality Education for Young People with Autism” will be held Thursday, August 18, 2016, 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. This class will be led by Britta Saltonstall, PhD, BCBA.