When my son Jeremy reached 22, he left the auspices of the school district. Like many on the spectrum, his interests and needs were varied and he didn’t fit into any of the adult programs that existed in our area at the time. Jeremy wanted to continue to learn at our local community college, improve on his writing skills, and start earning some money.
Some of his goals in both his Individualized Education Program (IEP) and Individualized Transition Program (ITP) in his last few years of high school addressed areas such as planning and self-advocacy, so that he would be prepared for the different rights and responsibilities that exist for college students. But he also learned work skills by writing for the high school newspaper, and learned about marketing in order to get freelance work. He took his first class at community college while still in high school and this was extremely helpful. Other aspects of the transition to adult life did not go quite as smoothly, but luckily we had some contingency plans to fall back on. His progress (and pitfalls) demonstrated so clearly that creating an adult life is an ongoing process.
The transition to adulthood can be quite a shock for both the adult child with autism and his or her parents, no matter how well you prepare. In our book, A Full Life with Autism; From Learning to Forming Relationships to Achieving Independence, Jeremy and I offer practical advice from our experience as well as information obtained from research and other parents, professionals and adults on the spectrum. Here are some tips for parents to consider…
Start Early To Prepare Your Teen On The Spectrum
The reality is that your teen may qualify for services when he is an adult, but there are not enough spots or options available for our loved ones on the spectrum. Make sure to get your child on lists for services you feel may be a good match as early as possible. As well, make sure to include on your child’s IEP and ITP goals for life skills that they will need as an adult in the community such as self-advocacy, self-regulation, and task completion (includes planning and organizing). These can be taught at different ability levels, and are necessary for all to learn.
Transitioning Young Adults; Transitioning Ourselves
Parents often discuss how challenging transitions are for our children on the spectrum, but they also are difficult for parents. While our teens are in school they have a schedule and access to educators and professionals they have known for years—and so do we as the parents. That support ends when our young adult leaves the school district.
Many parents will also be juggling trying to help elderly parents and perhaps keeping their jobs in this new economy. There is a risk of burnout and parents need to be creating connections and supports that will be there for us when our students leave the school district. Carving out a bit of time for what we want to do for ourselves that reduces stress and provides pleasure to our lives is important.
Plan The Future Based On Your Child’s Interests
It’s important that whatever plans are being made are based on the teen’s interests and desires. This is a good way to create connections and ensure more enjoyment out of life. A great planning tool you might want to consider using to help your teen is person centered planning, which is a problem-solving process that helps a person with a developmental disability plan the life he or she wants. A group of people who care about the person get together and figure out how to support the person in planning his or her life, depending on their goals and needs.
For those who are unable to communicate effectively, it is even more important to have people involved who know the person well enough in different areas of the person’s life to help give input about what appears to be important to that person. Using PATH, a creative process that works backward, starting with the person’s hopes for the future and moving toward what first steps can be taken now to go in that direction is a good idea. A PATH identifies goals, and who can help the person reach his goals.
Create Circles Of Support
Creating different circles of supports is what most of us have been doing since birth. We’ve been creating networks of people who connect with us on different levels. Most neurotypical individuals have people in four types of circles of supports.
Those with disabilities—including autism—have practically all the people they know clustered into the Circle of Intimacy, and the Circle of Exchange (paid service providers). Having connections only on these two levels helps create the emotional and financial strain on the family that most of us parents of loved ones on the spectrum feel. What is needed is more connections to organizations and areas of interest (Circle of Participation) where there is the possibility of meeting people who eventually become friends (Circle of Friendship). This will not only provide more quality of life for your adult child, but will ease the strain on the family.
The young adult and his parents need to create a circle of support of people who care about the adult child but who are not related to him, and who are not currently paid to care for him. These may be former tutors, therapists, or teachers, people from church or school with whom the adult child has developed relationships.
Creating the Circle of Participation and the Circle of Friendship for someone like Jeremy, who needs a support person and uses assistive technology to communicate but does not easily initiate communication, is not easy. However, by focusing on his interests—writing, autism, and advocacy—we are making connections with other people and organizations. Creating a meaningful life does not happen overnight; it’s an ongoing process and can be rewarding for all involved.