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 email@example.com.
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.