“What do you want to be when you grow up?” This question is first posed to youngsters before they even reach first grade and continues in some form for years to come. Those words can make parents of children with autism cringe. We are not sure what lies ahead for our children in the years to come. In fact, we are often unsure of the status of next week. Our focus is simply to get through the day. But, too often, thoughts of the future wake us up in the middle of the night. What is stimming?
Action can be an antidote to worry. As the moms of two adults with autism, we suggest two avenues of action to help alleviate concerns: focusing on transition-readiness skills now, regardless of the age of your child, and advocating for systems that better meet the needs of individuals on the spectrum.
Although school systems typically focus on the transition to adulthood when students turn 16, parents can start building towards transition at an early age. Starting now, we need to build key skills that will help our children have as much autonomy as possible.
● Exercise choice-making
The ability to make a choice is crucial to self-determination for people with autism. This skill should be part of any intervention plan and practiced frequently in the home. Consider choice-making to be a muscle that requires consistent exercise to become strong. Integrate small choices into every activity: Do you want to put the cap back on the toothpaste before or after you brush your teeth? Do you want to button your jacket from the top or the bottom? Do you want to use your right hand or left hand to turn on that light? Our goal is to help our children move beyond a simple choice between two offered options to an expression of their own preferences throughout their daily lives.
● Increase independence
For many parents of children with limited language, increasing a child’s independence has the downside of potentially decreasing the motivation to communicate. We fear that if the child can get the juice himself, we will miss out on those precious words: “I need juice.” We need to set aside those fears, however, because fostering the spirit of independence is critical to preparing for adulthood. At every opportunity, we need to build our child’s habits of self-care. We can do so without losing communication skills if we, along with our intervention team, focus on continually adding new words to the repertoire.
● Prioritize life skills
As parents, we often want to focus our energy and interventions on academics to the exclusion of life skills, because we feel our window of time is limited. Many suggest teaching life skills at a later date, so their children can keep up with peers in the classroom. That tendency is not surprising, since our culture tends to value academic skills over self-help skills, even in our small children. We cheer if a child can count to ten in a foreign language, but we are less impressed if she knows how to blow her own nose. Parents sometimes view building “functional skills” as giving up on academic skills, but those functional skills should be emphasized at every step of the way. Those are the skills that often determine the long-term quality of life.
Existing systems for transitioning to adulthood are not designed to meet the needs of many individuals with autism. As parents, we need to advocate for opportunities that better match the skills and challenges of individuals on the spectrum.
● Person-centered planning
The use of person-centered planning is often a requirement in transition services. This individualized process is laudable, but, unfortunately, it requires a level of language that a significant segment of the autism community may lack. For language-challenged individuals with autism, completing this planning can be meaningless if the tool requires them to answer questions like “What are your dreams for the future?” We need to ensure the use of effective planning tools that are designed to discern the personal preferences of those who are unable to use language to express them.
For some parents, guardianship is a necessity to allow for continued care for an adult with autism. The process of instigating a lawsuit against your child is draining, both emotionally and financially. Rather than fitting into legal systems designed to support people who have become incapacitated, we need new procedures that are more suitable for situations of maintaining legal support for adults with autism who require that significant level of help.
Funding is extremely limited for adults with autism who need continued services. Most funding sources are only through Medicaid waivers. The reimbursement rates for these waivers are often based on a higher client-to-staff ratio than is workable for individuals with autism. Consequently, few organizations can design financially-viable programs that truly meet the needs of this portion of the spectrum. We need more funding options for individualized services for adults who need significant support.
While the national focus on competitive employment in an inclusive environment is admirable, we need to consider that some on the autism spectrum may need another option to thrive. For some, the social demands and sensory input of a competitive workplace may be aversive, prohibiting them from working at a level that they could achieve in a workplace designed for them. We need to broaden the range of employment opportunities that are considered successful job placements.
Housing opportunities for adults who need support remain too limited nationwide. Unfortunately, the regulations intended to protect individuals with disabilities can sometimes work against the specific preferences of individuals with autism. For example, requirements for distancing between housing and services may inadvertently decrease independence for adults with significant challenges. We need to advocate for housing models that meet the needs of individuals across the entire autism spectrum.
“What do you want to be when you grow up?” As parents, we generally have the same answer for our children: we want them to be happy, independent, and productive. We can lay the groundwork for their futures by taking action now to build self-determinative skills and advocate for autism-friendly options.