Two pieces of advice have been essential in my son Jacob’s progress to become as independent as possible. The first came from Steven E. Lindauer, PhD, the director of the Pediatric Developmental Disabilities Clinic at the Kennedy Krieger Institute: “Expect the same thing from both of your children. [Mackie has another child who’s neurotypical.] Even though Jacob has autism, children with autism do grow up and will become adults.”
The second piece of advice came from Gary S. Allison, MEd, EdD, assistant professor of special education at the University of Delaware’s School of Education: “Always be planning for five, ten years down the road. If you are teaching a skill when it’s needed, you are late.”
These pieces of advice have been directing Jacob’s roadmap to independence. He may never be able to live by himself, but he can still be independent.
My husband and I started teaching Jacob how to do chores that had clear endings, such as feeding the pets, putting seed and peanuts out for the birds and squirrels, folding towels, taking out the trash, and plugging in his AAC (augmentative and alternative communication) device. Since then, we have learned that what we teach needs to motivate Jacob, be functional, and produce immediate results. Jacob also needs to be able to relate to it. Most importantly, what we teach has to be useful in his adult life and make him less dependent on other adults.
Our first step was to find motivators besides motion and sensory activities, electronic games, the computer, TV, and food, because these could not deliver the reinforcement needed to impact Jacob. This issue plus Jacob’s lack of communication skills steered us to the Picture Exchange Communication System (PECS) and Pyramid’s token economy system. These tools not only motivated Jacob but also gave him a sense of control during intense learning sessions.
At his ABA (applied behavior analysis) sessions, Jacob was taught how to use a wall schedule to organize his day. This tool gave him receptive language, which is the ability to understand information.
Over the years, Jacob’s wall schedule has decreased in size to a portable three-inch binder. His revision of Pyramid’s token economy system has also evolved and is now used in combination with his portable binder to schedule every part of his life. We have relied on this system to teach basic skills (such as what a bathroom is and what we do in it). And it guides and reinforces Jacob as he completes his daily living skills and household responsibilities and enjoys leisure activities. We expect this tool to eventually become Jacob’s daily planner in which he will independently create, manipulate, and plan his own activities.
When first tackling household chores, we took baby steps. First, we chose a task that everyone shared equally, such as clearing the table after dinner. Everyone also collaborates in cleaning the kitchen, so our family modeled this behavior for Jacob. Each step of the task was represented by an icon on his portable schedule; each completed task earned a token.
Teaching a new skill begins with creating specific icons for each step of the task and then guiding Jacob through each step. As Jacob learns the skill, we replace the specific task icons with a generalized icon.
We slowly expanded his workload by combining activities for one icon while adding other responsibilities to the schedule. This step created greater expectation for each icon. Initially, each schedule was used to complete one task, but as Jacob learned the new task, each step was strung together with the next. Eventually, the task was condensed into one icon on a schedule.
For example, Jacob’s first morning schedule consisted of five tasks—brush teeth, shave, shower, brush hair, and get dressed—followed by a 10-minute break to reinforce the positive behavior. His morning routine also contained other responsibilities. At first, we had to create three separate schedules to complete all of Jacob’s morning tasks. As a result, Jacob’s morning routine took 1 1/2 hours. But over time, my son’s morning routine condensed into only 45 minutes. Jacob now completes 15 tasks, which are represented on his one schedule as “bathroom, bedroom, medicine, animal, and breakfast.”
In the future, my husband and I want Jacob to learn abstract concepts, such as time management and self-determination, but first, he needs to learn how he can impact his world and what his capabilities are as well as discover his choices for himself.
My husband and I believe that these goals are achievable through household chores because they help Jacob take care of his belongings and his environment.
Today, Jacob is learning to plan his own day by operating his portable schedule himself. To this end, we place two icons on his portable schedule. Each icon represents a task he must complete and may include current goals, new skills, or tasks that must be accomplished in a timely manner, such as getting to a doctor’s appointment on time.
We also give Jacob a choice of what else he would like to add to his schedule. He chooses from his lists of chores and leisure activities. This process allows him more control over his day and begins to teach him time management. Both pieces are necessary for developing self-determination.
Sun contributor Karen Mackie is a parent with a child on the autism spectrum and long-time autism advocate.
This text was edited for consistency of language and message and appears in the autumn 2018 issue of the Autism Delaware™ quarterly newsletter, The Sun.