Archive for March 2016

Monthly Archive

The Autism Blog turns 5!

5yearsFive years ago today we launched The Autism Blog. Since then we’ve posted more than 250 blogs and have nearly 950 faithful subscribers from all over the world.

We have to admit that we were a bit hesitant when first approached about hosting a blog. In fact, we weren’t even sure we knew what a blog was. Knowing how busy our providers are seeing patients, we wondered if it would be a challenge to get blogs written for a weekly posting. That indeed has turned out to be true but given that there seems to be no shortage of topics to cover, we always find a way to make our deadline, even if it means chasing down a provider in between appointments for a few words. The Autism Blog content/editing/graphics/video/production team consists of yours truly, Erin and Lynn and we continue to learn something new every time we post. Thanks to all who have contributed meaningful information for parents and their families affected by autism and to those who provide guidance with technical support. It’s a concerted labor of love and we look forward to the next five years with you!

 

 

 

 

 

Ask Dr. Emily- When school is over and more on Theory of Mind

Welcome to the March 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 here, on the last Friday of each month, 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: What happens to people who are diagnosed with autism after the educational system is over for them and their caretakers cannot take care of them?

A: This is a timely question as a large number of children with autism are coming of age into adulthood. It’s also a question that could take pages to address, but here is a short summary. For previous generations, parents were told at diagnosis, that placement in an institution was best. Things are much different today with early intervention, educational rights, behavioral therapy, and other services in place. However, issues remain in terms of access, quality, and efficacy of adult care. Frankly, today’s parents are expected to care for their child until adulthood.

While services for individuals with autism have improved, supports and services for their families are woefully inadequate. One major “missing piece” for parents is true respite, giving them regular quality relief from the stress of 24-7 caregiving. With overloaded waiting lists for state services, many families struggle, physically, emotionally, and financially, to hang on until age 18-21 when faced with major transitions, including aging out of the public educational system and pediatric services and out of home placement.

In the state of Washington, “supported living” is the most likely option available to young adults who qualify for Developmental Disability Administration (DDA) services. In this model, clients live in apartments or houses in the community with one or more housemates and receive supports and services from a contracted agency, including 24-7 caregivers.

As far as educational, vocational, and recreational opportunities, while there are some services out there, we have a long way to go in developing meaningful opportunities for our young adults. Parents typically band together to explore and develop such options. This was the case in the creation of Seattle Children’s Alyssa Burnett Center, where Barbara and Charlie Burnett developed a center for their daughter and others, where they can continue to learn and be part of a supportive community.

In summary, adult services and opportunities for those on the spectrum are lacking as they once were for children on the spectrum. It will be through the concerted effort of parents, providers, and the community at large that we catch up.

Q: Hi Dr. Emily. I really enjoyed reading the Theory of Mind blog. I’m wondering, are their resources for improving ToM in children with autism? Can ToM be learned if a child doesn’t develop it naturally? Do providers offer “ToM training” for parents?

A: Theory of Mind (ToM) is a skill that typically develops between three and five years of age. If it doesn’t develop naturally (as evidenced by clinical measure and clinician observation), there are ways to compensate. For example, if one does not naturally think about what others are thinking, they might learn to simply ask. Social stories, increased exposure to social situations and peer interactions, coaching regarding “thinking of others,” and teaching to “look for clues” that reflect how others may be feeling are just some of the strategies that might be helpful in compensating for ToM challenges. Social skills groups often focus on teaching these kinds of “thinking about others” skills. The key is practice, practice, practice, so the more coached social interactions kids with ASD have, the better the outcome.

The bottom line is that our focus shouldn’t be on teaching theory of mind just as our focus shouldn’t be on curing autism. What matters is assessing specifically what each child’s strengths and challenges are and tailoring treatment to teach skills that will help a child best navigate his or her world.

Top 10 Questions Parents Ask Us at Seattle Children’s Autism Center

newtopten

 Questions? We get questions! With so much still not understood about ASD, our answers often don’t come close to what parents want to hear, yet we do our best to share what we do know and what we don’t know. Today we share some of the questions we hear most often at our center.

 

1. What caused my child’s autism?

We don’t know for every child. We’re working on it. But we do know that genetics is playing a very strong role in what causes autism. In fact, scientists can now identify the genetic contribution in nearly half of all children with a diagnosis of autism.

2. Did I do anything to cause it?

No. Although many parents feel guilty and worry about this, it is important to realize that you did nothing to cause autism.

3. Can autism be “cured”?

No. Treatments aim to improve functioning, but will not cure autism.

4. Will my child ever talk?

We just don’t know. Some kids with autism do, some never do. However, we do know that there are fewer children with autism who are minimally verbal than there used to be, likely a result of earlier intervention and behaviorally-based treatment?

5. What will my child’s future be like?

Unfortunately we are not able to predict with certainty what a child’s future will be. However, we do know that kids with ASD do make progress in skill development and overall functioning so continuing to help your child learn and grow is important. It’s hard to imagine your young child as an adult but keep hopeful your child and you will be different in years to come. Parents of teens and young adults often attest to this?

6. Do I have to do everything you’ve recommended to us?

No. You’re the expert on your family and the best recommendations are those that fit with your family’s values and capabilities. We provide you with a number of recommendations knowing that only you can decide what you can and cannot do. You might ask your provider to prioritize those that you feel you are able to do. There are many variables that come into play such as insurance coverage, access to services, financial ability, and competing demands in your life.

7. How do I get my child to stop (fill in the blank with your child’s challenging behavior)?

You may never get your child to completely stop. The core behaviors associated with ASD are stubborn and difficult to treat. However, behaviorally-based interventions can be effective in addressing challenging behaviors, reducing those disruptive behaviors, and increasing appropriate behaviors.

8. Is there a medication to help my child with (fill in the blank with your child’s challenging behavior)?

Maybe. There are a number of medications that have been supported by the scientific literature to help address behaviors that are sometimes associated with autism. For example, to reduce self-injurious and aggressive behavior, medications have been shown to be effective. Similarly, many of the medications that are used to treat depression and anxiety in children without autism work may well for children with autism. Medications to reduce hyperactivity and impulsivity can also be effective at reducing those behaviors in autism. Keep in mind, there is no medication that cures autism or that works for every child in addressing challenging behaviors. Work with your provider to assess your child’s unique issues.

9. How do I get my child’s school to (fill in the blank with what you wish your child’s school would do)?

Educate yourself and them, pull together resources for yourself (i.e.: an education ombuds, Wrights Law, fellow parents), approach them with a spirit of collaboration and partnership, be realistic in your expectations, and be respectfully persistent, citing precedents if possible.

10. How do I explain autism to others?

You can tell them that it is a developmental disorder that affects social and language skills and often includes repetitive behaviors, specific interests, and/or sensory sensitivity. Our blog is also a good resource to help people understand ASD. In particular, two blogs on why our kids do what they do might be helpful. (Why Do Kids With Autism Do That? Part I and Why Do Kids With Autism Do That? Part II)

Have a question about autism? Write to us and we’ll do our best to answer.

 

 

Addressing Challenging Behavior Part 2 of 2- This Month’s Autism 200 Class

apple1This month’s Autism 200 Series class “Addressing Challenging Behavior Part 2 of 2: Strategies for Home and School” will be held Thursday, March 17, 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 Nancy Rosenberg, PhD, BCBA-D.

 

Autism and Theory of Mind

Theory of mind

Autism and Theory of Mind

We often hear or read that those with autism lack “Theory of Mind” (ToM). What exactly does this mean? For the answer we went to our own Dr. Emily Rastall. Here’s what she told us.

Theory of Mind (ToM) is defined as an understanding that others have minds that are different from our own. More specifically, it is the understanding that others have thoughts, feelings and perspectives that differ from ours. In short, ToM allows us to understand and predict the behaviors of others based on what we think they might be thinking. For example, though we may not be feeling sad ourselves, we can imagine another’s perspective and empathize with someone who might be having a hard day.

The classic Theory of Mind task (called the Sally-Anne task) exemplifies this understanding that others have minds that are different from our own. In the task a child must determine what another’s response would be based on false belief. In the task, the child observes two models (Sally and Anne). One of the models (Sally) places an object in a hiding spot and then leaves. The second model (Anne) moves the object to a new hiding spot.

When Sally returns, the child must indicate where she (Sally) will look for the object. In order to respond correctly, the child must be aware that Sally did not see the object being moved and therefore has the false belief that the object is where she originally placed it. Researchers have shown that prior to four years of age, children’s responses are inconsistent, with some children showing this ability while others do not. However, between the ages of 4 and 6 years, this ability emerges and becomes consistent in typically-developing children. This “mentalizing” ability appears to be impaired in individuals with autism.

Within the context of autism spectrum disorder (ASD), deficits in ToM may be at the core of many of the behaviors associated with the disorder. For example, ToM limitations may lead to misreading or failure to read emotions, intentions, or cues from others. In addition, ToM challenges may lead to limited expression of empathy toward others. ToM deficits may also result in one approaching a social situation with assumptions that may not be accurate. Finally, reciprocity (the give-and-take, mutual benefit of a relationship) may be impacted, as a result of having challenges picking up on cues from the social environment.

ToM may help parents and others to understand the often perplexing behavior of children with ASD such as:

  • Inappropriate reaction to the emotional expression of others (i.e.: laughing or not “getting it” when someone is angry or sad)
  • Difficulty understanding that their behavior has an effect on others
  • Assuming that what they think and feel is what others think and feel
  • Difficulty with taking turns in a conversation and asking questions about the other person or allowing him or her to share what their interests are
  • Difficulty understanding characters in a book or movie or engaging in pretend play

As such, it’s important for family members to remember that these perplexing behaviors are not willful or intentional, but the downstream effect of challenges with TOM.