Adults with autism: becoming the directors of their own treatment teams and treatment plans

Michelle Garcia Winner

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Many of our students/clients received some level of support through school based 504 plans, IEPs and/or from counselors, psychologists and psychiatrists in their community as children and into their high school years.

Turning 18 years old in the United States results in a person being referred to as an “adult” or “young adult.” This means they are legally responsible for their actions and based on their parents’ decision, they are potentially responsible financially for all of their costs of living, education, etc. However, many parents continue to financially support their young adult/adult children while they pursue post-secondary education as well as assist with living costs if their “children” are unable support themselves. To parents this may feel like their adult-children continue to require extra educational, psychological, social skills and/or life-skills counseling to help them learn to live more independently as an adult. While parents may fund these extra educational/therapeutic adult services, parents are not typically permitted the same direct access to their adult-children’s service providers. Instead it is expected adult-children can independently understand how to utilize the information they are gaining from these treatment services and then directly apply strategies learned as needed across their school, vocational, community or home experiences.

From our experience, this is not the case. As our students transition from high school into and across their adult years, they struggle to direct the teachings and find meaning within the guidance offered by their treatment providers (tutors, counselors, social thinking therapists, etc.) When these adults were children, their parents were often very involved in guiding the treatment team and assisting with the development of the treatment plan and even goal writing. Now, as adult clients, they struggle to find a strong, meaningful voice in their treatment program, which results in weak follow through with applying what they are supposed to be learning outside of the actual treatment sessions, or even fully understanding why they are working on it inside the treatment session. Treatment services may have been established with client feedback working alongside well-meaning clinicians, but there can still exist a lack of clear ownership of treatment goals and related outcomes when our clients don’t realize they are solely responsible for the ultimate destination/outcome.

Federal law requires that students on IEPs in high school be guided through a legally mandated transition plan to start them thinking about life as an adult. A body of research also suggests that helping students develop “self-determination” leads to them making more direct decisions about their treatments, more actively participating in the development of the transition plan, and being a more active participant at their IEP meeting. Actively working with students during high school to be more direct leaders of their own treatment plans is highly recommended. However, while students are still in high school they can’t imagine how they will manage their treatment team in adulthood when the team doesn’t actually know each other!

Many parents of my adult-clients continue to pay for their adult-child’s services. Because they no longer help navigate their adult-child’s actions/decision making they wonder if the treatment is effective. They tend to have no idea what their adult-child is working on in treatment or whether they are utilizing related strategies. Furthermore, other members of the adult-client’s treatment team may not know what other treatment professionals are asking of the client or whether their messages are consistent or conflicting. The bottom line is that most adults may see many treatment professionals but there is typically no “treatment team” in any team-based sense unless the adult-client is enrolled in a specific program that offers coordinated team-based services (e.g., a transition to college program).

Many of my 22-30 year-old clients have multiple treatment service providers, yet these clients have little accountability to each of their specialists. I have yet to work with a client who encourages different specialists to coordinate with each other on the client’s behalf. Seeing this happen again and again, I felt it was important for me to help my clients more actively learn that they are responsible for their own treatment team. This includes how to discuss the services being received, ask questions, seek clarification, share information among specialists, and advocate for what they need to learn. The result is the following long term teaching unit comprised of a scaffold of lessons. Social Thinking treatment, upon which these lessons are based, dovetails nicely with other lessons that may be generated from post-secondary oriented professionals such as special educators/tutors, counselors/psychologists and life-skills learning specialists:

Becoming the Director of Your Own Treatment Team

The following are some ideas we are exploring to help our students take on more responsibility for guiding their treatment professionals (even parents) and using what they are learning more effectively.

Download the full worksheet here as a PDF

Courtesy of Social Thinking