Expert Q&A: Teaching self-care skills to autistic youth with high support needs

Many parents and caregivers worry about what will happen to their autistic child once they are gone. Teaching autistic children and adolescents self-care skills early in life can help ease some of these worries and increase their independence at home, school and in their community. With the right strategies and ample practice, many children and adolescents with high support needs can create healthy routines that serve them into adulthood.

Dr. Lisa Nowinski

In this Q&A, Dr. Lisa Nowinski shares strategies for introducing self-care skills and building them block-by-block.

Dr. Lisa Nowinski, Ph.D., clinical director of non-physician services at the Lurie Center for Autism, an Autism Speaks Autism Care Network site, and instructor of psychiatry at Harvard Medical School, is a clinical neuropsychologist with more than a decade of experience diagnosing and caring for individuals with autism spectrum disorder (ASD) and other neurodevelopmental disorders.

Why do autistic teens and adults with high support needs often struggle with self-care?

Some of the biggest barriers to healthy self-care for autistic teens and adults with high support needs are limited communication skills, slow processing speed and difficulty with executive functioning skills such as task initiation and planning/organization.

In addition, there are systemic factors that make self-care more challenging, including instruction that is not adequately focused on generalization and independence from the beginning. It is critical that we plan for skill generalization and fading prompts from the very beginning when we are teaching self-care skills. 

How do autistic individuals’ self-care needs change during puberty?

When autistic individuals enter puberty, the need for hygiene skills and other activities of daily living increase dramatically. Changes in hormones, body odor and menstruation all require more attention and care. In addition, as bodies age and develop, and individuals naturally spend less time under the close care of their primary caregivers, it is particularly important that autistic folks are able manage their own hygiene and self-care needs as independently and safely as possible.

What are some specific strategies caregivers can use to help autistic adolescents with high support needs master basic self-care skills like personal hygiene and handwashing?

It is never too early to start to teach self-care. I encourage parents to focus on building independence with self-care skills at an early age. Caregivers should be mindful of helping youth develop regular routines for self-care. Practicing small skills everyday can be helpful in building independence over time.

While some children will require continued support, prompting and reminders throughout adolescence and adulthood, a strong foundation of independence with self-care early on can really help a child to master self-care skills with greater independence as they get older.

How are these strategies different when teaching more complex tasks like meal prepping and basic household chores?

For more complex tasks such as meal prepping and other household chores, the same strategies can be helpful, but it is also important to pay attention to safety-related concerns around cooking, food preparation and the use of potentially dangerous substances or appliances for cooking and cleaning. Some youth will require modifications that allow them to complete necessary tasks in a safer way, such as learning to use a microwave to heat or prepare food instead of a stovetop or oven which may present greater risk of harm. 

What kinds of prompts or aids can be used to promote an autistic youth’s independence with self-care skills?

Fortunately, there are lots of tools available to support autistic youth’s independence with self-care. This includes both low- and high-teach solutions, such as visual schedules, picture checklists, or the use of task completion and habit-building apps. In addition, building a regular and predictable daily routine for all activities of daily living can help youth get into the habit of managing their self-care needs.  

What are the biggest mistakes that you see parents make in their approach to teaching self-care? What help is out there if their strategies are not working for them?

The only “mistake” parents and caregivers can make when teaching self-care is not starting soon enough! Many autistic youth are capable of mastering many self-care skills with time and plenty of opportunity to practice. If your strategies are not working, you might consider reaching out to your school team. Private therapies such as occupational therapy can also be really helpful in building a child’s physical capacity and the motor skills necessary to tackle self-care. 

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