Autism and Parenting: Preparing Yourself for Your Child's Transition to Adult Life

The last few years have been full of important life transitions in our family. One of them has been the transition of our son, Jeremy, out of mandated school services into adult life. Jeremy’s transition to adult services was not at all smooth despite our planning. The research we did to write our most recent book indicates that our experience with transition was not unusual. A proactive optimist at heart, I was not prepared for how laborious, discouraging and depressing the process would be. After much soul-searching I decided that if we were going to not only survive, but to actually enjoy a good quality of life in this new phase of our lives, we needed to make some changes on how we were approaching planning for the future.

Transition is a process, and with the right perspective it can be enriching and rewarding. We started by defining what was important to us based on our principles, exploring our options, envisioning and creating new ones and then developing a game plan and that worked for us.

Here are some recommended steps that we share in A Full Life With Autism to help you stay focused on what is important to you and your family, while you are helping a young person create a future worth living:

1. Clarify your family’s principles surrounding the notion of disability: This step is important as it drives the rest. What principles does your family believe to be the most important? Do you believe in self-determination, in the right of your adult child to make decisions or have input in the decision-making process? Do you believe in full inclusion or segregation, or something in between?
2. Establish clear short term and long term goals: Clarify with your adult child what his goals are for the next few years and for the long-term. If your adult child does not communicate effectively, then figure out what his strengths, choices, joys are with the help of people who know him well in all areas of life such as other family members, educators, therapists, friends. There are some great tools out there described in our book which are extremely helpful for facilitating these discussions. Decide as a family how to support the adult child’s goals. Realize that these can change over time as life is a process. However, make sure your goals are clear and concise.
3. Let your principles and goals drive your decisions and your actions. Sometimes the systems in place are unable to support your goals. In those cases, revisit your principles on which your goals are based (i.e., full inclusion in the community), and the options the systems have to offer. If the options offered are based on the same principles, you may be able to work with the system to create a solution. If not, and if your principles are important to you, then find a way to create a solution without the systems. Some solutions you may be able to create on your own (i.e., self-employment options, microboards). For other solutions (i.e., housing) you may need to find other like-minded parents and professionals to work with to create acceptable options.
4. Realize which things you have control over and which you do not. Realize that you have control over you family’s individual and collective goals based on your principles, but you have no direct control over the economy or the funding guidelines put into place by the systems in power. We have control over the things we own, and how we spend our money. We have direct control over our actions and our emotions. In other words, we cannot always control what happens to us, but we can control how we decide to react.
5. Plan how you are going to reach your goals. If your plan relies on systems or funding over which you have no control, then have a Plan B, and even a Plan C ready so that if you cannot find or create a workable solution with the systems in place, you still have an acceptable plan. There is freedom in knowing you have options, and that you do not have to accept options that are not in line with your principles.
6. Find like-minded people who have the same goals. It is clear that there are not enough options for all adults on the spectrum. Other people have done what you have, or are looking into doing so. Why re-invent the wheel? Together you have more power and can share resources, or at least have like-minded people to brainstorm with. When enough like-minded people get together, systems change can happen as well.
7. Take care of yourself. There is only one you. Make sure you are taking good care of your health, eating and exercising and taking mini-breaks. Don’t lose ‘you’ in the process of transitioning your adult child. Make room for whatever gives you joy in your life. If you are unhealthy or unhappy, you won’t be enjoying the process and neither will your adult child. Don’t lose sight of YOU.

Focusing on what is important to your adult child and the family is empowering. By knowing what your goals are you will better prepared to analyze what your family’s needs are, the existing options and the creation of new ones. Remember it is a process, and do not get discouraged. Creating an adult life for anyone is quite a journey!

Next week, I hope to share some of my son's tips on this topic.