Category: Uncategorized

This article is part two of a two-part series. You can read part one here. You can schedule a free life coaching consultation on my Calendly page.

Now that we established why self-determination and autonomy are important, here are the next steps you can take to get there.

Supported Decision-Making

Supported decision-making allows people to make decisions about their own lives with support from a circle of people they choose themselves. Rather than having choices made for a person, it allows them to make their own decisions with assistance from people they know and trust.

People without disabilities use supported decision making every day. They take it for granted as their right, without having to create a formal plan. Most neurotypical people have a trusted friend they go to for dating advice. They do not make financial decisions alone. Many go to a financial advisor to set up a retirement savings, for example.

For those of us on the spectrum, we need to map out a deliberate process. Our loved ones have to know that we will demand our right to self-determination. For many autistic people, this will not be given freely. We also need to make sure the folks in our circle of support understand their role and know that we plan to come to them for assistance.

Our meetup group recently had a presentation on supported decision-making in partnership with the Michigan Developmental Disability Council. We learned the following basic steps to create a supported-decision making plan.

step 1: Start the conversation

I honestly believe this is the most difficult step. Especially in cases where an adult in their or 30s or 40s has a biological parent making decisions for them, these relationships are well established. Everyone has a role that they have been playing for all those years and you cannot change those roles without addressing the situation openly.

If you are going to create a supported decision-making plan and take control of your own life, you have to communicate this to those currently making your decisions for you. This might be more than one person. You do not have control over how they react to your decision, but you do have control over how you react to them. For some, it might be an easy process, but for others you may get some push back and will need to stand up for yourself.

This might take some time for people to process, especially if they had no idea you felt this way. While your loved ones are processing this change, you can start to think about the areas in your life where you will need support.

I know we tend to be black and white thinkers. You might be thinking – “I either need support or I don’t need support.” That is not really true. There are probably areas of your life where you are comfortable making decisions with no support at all, some where you need minimal support, and others where you need a lot of support. And, these may change over time.

Areas of your life where you might need support:

• Education
• Health/medical
• Career
• Home/apartment
• Financial
• Legal (contracts, lawsuits, buying property, etc.)
• Communication (online and in person)
• Friendships
• Romantic relationships and sexuality
• Mobility/travel
• Safety & privacy (like who to give contact info)

There may be others that are not on this list and some may not be relevant for you.

step two: Identify who is willing and able to assist

Start making a list of people in your life who you go to support and people you want to start going to support. You may also want to take some time to think about people in your life who are currently helping you who may not be good choices for your support circle.

Think about who you trust. Trust is a crucial part of your circle of support. If you struggle to understand who you trust or do not trust, focus on how that person makes you feel when you are with them. After you are with a person, take some time to review your feelings. The more you do this, the more you will develop an intuition about people and learn to trust yourself. Sometimes you will be wrong about a person but try not to let that stop you from trusting yourself. No one gets it right every time, not even neurotypicals.

Who will be part of your support circle?

• Parents
• Friends
• Siblings
• Extended family members
• Teachers
• Employers
• Co-workers
• Peers
• Therapist
• Life Coach
• Primary Care Physician
• Case worker
• Community members
• Nonprofit organizations
• Church leader or congregation
• Consultants and service providers (lawyers, accountants, financial advisors, etc.)
• Electronic personal assistant

Not all of these will be relevant for you. Maybe you will only use a few of these, or maybe you will use many. You do have options.

step 3: Plan and communicate

Some people will be good at helping with relationship questions and others will be better at helping with financial decisions. You may have cases where one person helps you in multiple categories and others that just help in one area. Your best friend, for example, might help you in multiple areas. They know you personally and you are likely to go to them for advice about dating, job changes, medical treatments, etc. Your financial advisor, on the other hand, is not someone who will help you with medical decisions.

Write or draw out which people will help in which categories. This will help you identify any gaps. If you are struggling to find someone to fill a specific role in your plan, perhaps there is someone in your current list who can help you with that decision.

Communicate with your support circle to make sure each person understands the support relationship, including you!

You should discuss the criteria of your support relationship and set up boundaries before entering into an agreement. For example, some people may only be willing to work with you once a week or so, while others, like close friends and family, might be available every day. Some people prefer to be contacted by email. Some may go to bed early or sleep in later in the morning. What hours are okay to contact your support person?

Still others, like coaches, therapists, and financial advisors, will charge for their services. You will need to budget for how often you plan to work with professionals.

step four: Set up an agreement

You need a written and signed document that you can refer to. Your supporters may change over time. They are not signing a lifetime commitment, but they are making a commitment to you that they should be willing to put in writing.

There are existing forms that you can use for this at the Center for Public Representation’s Supported Decision-Making website.

step 5: Let everyone know

It may be as simple as having the signed document. Maybe the only people who need to know are your supporters. But you might have situations where others need to know. For example, if you have someone who helps you make medical decisions, like a patient advocate, your primary care physician and local hospital may require documentation of that in case of an emergency. Otherwise, they may not allow that person to help you.

When communicating openly with people about your supported decision-making plan, you are not only advocating for yourself, you are an advocate to our entire community. The more people know about supported decision-making, the more autistic people will be able to lead empowered and autonomous lives.

GET STARTED

My favorite resource for going through this process yourself is the Center for Public Representation’s Supported Decision-Making website. It walks you through the process of creating a supported decision making plan, step by step. It includes a resource library and a supported decision making form that you can create and have notarized to make it official.

If you need help along the way, you can contact Full Spectrum Agency. The Michigan Developmental Disability Council is also available to support you in this process.

Good luck with your supported decision-making plan and keep us posted on your progress!

Schedule a free life coaching consultation!

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! 

vision

A world where autistic people of all backgrounds and abilities are accepted and included as valued members of society and our respective communities.

mission

Full Spectrum Agency for Autistic Adults exists to support and foster independence and build community for autistic adults.

values

At Full Spectrum Agency, we strive for equity and act with purpose to create a better world for ourselves and for others. We believe in self-determination for all autistic people, diagnosed or not, across the full autism spectrum. Our values include

• Acceptance
• Inclusion
• Open hearts and minds
• Kindness
• Compassion
• Empathy
• Respect
• Friendship
• Equity

Our programs are autistic-led and designed in partnership with our autistic members to meet our existing and changing needs.

Goals

Meet individual autistic adult needs for

• Socialization
• Physical health
• Mental health
• Confidence
• Independence
• Self-sufficiency

Advocate and educate in the community to

• Create better access to meaningful work and volunteer opportunities for autistic adults
• Promote acceptance and inclusion of autistic adults in society