The Importance of Self-Determination and Autonomy for Autistic Adults

This article is part one of a two part series on supported decision-making. Turns out I have more to say about it than I thought! Part two will walk you through the process of creating a supported decision-making plan. 

Adults with autism deserve the right to make their own decisions – and their own mistakes – just like everyone else does. Too often, people assume that autistic people can’t manage for themselves. After a lifetime of hearing this message, it can have an adverse effect on self-esteem and confidence. These are the very things needed to lead an independent life. This creates a cycle of dependency. It’s a self-fulfilling prophecy.

I see evidence of this in my meetup group all the time.

Although most of the folks in our group do not have a legal guardian, many of them do have family members who insist on making all their decisions for them. In my opinion, this leads to a similar result of disempowerment and helplessness. The cause is different, but the outcome is the same.

I have parents. I know they want what is best for me and that is what other parents want for their adult children with autism, too. My parents don’t always agree with my decisions, but they do let me make them.

Good decision making is a skill that needs to be learned and honed with practice. Yes, our parents can and should guide our decision making as we are developing this skill set. But, as adults, the ultimate decisions that dictate the direction of our lives are ours to make.

I have made plenty of mistakes, and I learned something from all of them. I once moved in with a partner after dating for only a few months. The relationship fell apart really quickly, and it was not pretty. I moved back in with my parents and now I will think twice before moving in with my partner in the future.

But what would have happened if someone made my decisions for me?

Scenario 1

The scenario where my decision-makers forbid me to move in with the partner so soon would likely result in resentment toward them. I would not have learned a valuable lesson about taking relationships slow. In the future, I might move in with someone too soon and the situation could be worse. I could even end up feeling trapped living in an abusive relationship.

Scenario 2

The scenario where my decision-makers decide that I can move in with my partner would likely end the same way it did when I chose myself, with one important difference. I would not have to take responsibility for the decision, because it wasn’t mine, and I wouldn’t have learned anything from it. My decision-makers would be to blame for the outcome of my life. I wouldn’t have the opportunity to adjust my behavior and positively impact my own life.

What really happened

Because I made the decision, I was able to connect that action I took to the outcome. I understood that the consequences were a direct result of my decision. Then I took that experience and internalized it so it will influence all future decisions I make in life.

I can’t tell you how glad I am that I was given the freedom to learn these lessons while my parents are still here for support. When I see so many adults who have had that right taken away from them, I wonder how they will cope after their parents or caregiver are gone, without such well-honed decision making skills. Society will expect that, as adults, they should be quite capable of making at least the most basic decisions about life. But they probably will not be able to, and there may not be anyone there to make decisions for them.

Or worse… a bully, con artist, or other predator may see an easy target and take control of their life.

I don’t say this to scare people. I say it with the hope that loving, overprotective parents of adults with autism will let their child experience life and learn to be self-sufficient.

Now that we established the importance of self-determination and autonomy, read part two of this series to learn how to get there!