Power to the Parents! Creating Teachable Moments for a Toddler with Autism
Bryna Siegel, PhD (author of The Politics of Autism, Oxford University Press, Sept. 3, 2018)
The day parents learn that their toddler’s delays, quirks and difficult behavior add up to a diagnosis of autism (or ‘autism spectrum disorder’) is often the worst day of their lives. Nobody asks for, or plans for having a child who will not be able to learn like other children. But, it happens. That nadir day is unsurprisingly followed by a desperate sense of needing to know what to do, and how to get it, and for it to start happening as soon as possible.
After the day of that diagnostic visit, many parents, with a sense of panic rising, experience what I call ‘diagnose and adios:’ The expert doctors so eager to talk with you yesterday, are gone today. Parents have their child’s diagnosis in hand, a written report full of observations, actually, what they told the doctor, and what often reads like a boilerplate of websites and phone numbers to call and ‘get started.’
So, today, most parents turn to the web to get started. But, on the internet, the truth can be vulnerable, and there are, believe it, predators out there hawking their own agenda or products—telling you not to vaccinate again, to put your child on a gluten-free-casein-free diet, or to buy certain vitamins or minerals. There are no data that support any of these contentions—but how are you to know when you are desperate for what to do, and for a chat room full of other parents with whom you can discuss all this?
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Of recommendations given to parents of newly-diagnosed children with autism, the most powerful—and evidence-based—is to begin a high quality 1:1 behavioral therapy program—starting yesterday, as parents will read it. Often such programs can take months of paperwork, waiting lists and intakes to actually start. In this interim, parent anxiety rises. What can parents be doing, not just as a stopgap, but to become long-term supports for their child, and more effective advocates for their child’s individual needs?
As far as I am concerned, parent training programs are the first, and most important step parents can take to begin to help their child learn: Parent training programs for autism can teach parents to understand how autism affects their individual child’s learning. Most importantly, parents need to learn how to recognize and harness teachable moments throughout their child’s daily routines and playtimes. Parents getting a diagnosis of autism has much in common with parents who learn their child is deaf, severely hard-of-hearing, functionally or completely blind: Parents of deaf or blind children need to learn new ‘languages,’ new ways to reach and teach their children who lack all the same natural inputs as others. Learning sign language, teaching lip-reading, or teaching a blind child to walk requires skills parents have not just picked up along the way. The same is true for autism.
I have been working with families living with autism for the past thirty plus years, and can’t help but see that autism affects not only the child, but the marriage, siblings, and even the family’s place in extended family and community. It will take getting everyone on the same page to get the best outcomes. After almost 25 years as a professor of child psychiatry, running an autism clinic at the University of California, San Francisco, I left to help families living with autism—not just their children. While still a professor, I’d developed a program called JumpStart Learning to Learn, an autism parent training program, and when I left the university, JumpStart became the flagship for a new center I created, the Autism Center of Northern California (www.acnc.org/jumpstart).
At JumpStart, parents of newly diagnosed children with autism come for a week—mom and dad and their child with autism; one family, alone with just one interventionist each day for up to 6 hours. Parents meet with a behavioral coach who begins to train their child to respond to his name, make eye contact, make choices among foods and activities, and to calm down when things don’t go as expected. First the coach demonstrates, then, each parent in turn tries to do what the interventionist just showed them. Parents are coached to coach one another too. On successive days, parents meet with a communication interventionist (a speech and language pathologist) who introduces whatever form of communication the child is ready to begin.
On other days of their JumpStart week, parents meet with a social skills and play interventionist who teaches child-directed methods to expand play, and use play to practice social interaction and language in the context of things the child likes to do. Some days, grandparents, nannies and siblings come along to learn, too. Everyone practices key intervention skills and learns the names of techniques they will hear from teachers, tutors and therapists the child and family will meet in the coming years.
Parents are helped to understand what motivates their particular child best, and what comes ‘next’ in the different developmental progressions of social, language and play skills. Parents learn to recognize all the many, many ‘teachable moments,’ in their child’s day—getting him or her to use emerging social and communication skills when its’ time to change clothes, brush teeth, drink orange juice, or chose a preferred book for story time. Later, when JumpStart parents participate in an early intervention team, a school team, or a behavioral team, they are there as real team members—the experts on what their child already does and does not—and what it will take to get him to do what he knows. Debriefed at the end of their JumpStart week, and during annual follow-ups parents report more confidence, less helplessness, and a better understanding of just what a diagnosis means for their child—and what they personally can do about it. Power to the parents!