Often, autism self-advocates are connected to multiple systems and have many names, numbers, addresses, and details to keep up with to navigate supports, including services and benefits. The contacts they maintain are often over and above the number of contacts for their same-age peers maintaining independent lifestyles.
When my daughter went to college, one of the first things we developed was a list of the information that she often had to find out from me. We felt this list would benefit her as a self-advocate in many ways. We call this list “Who Supports Me.”
Click here for a version you can download and use. Supports vary from person to person, so you might need to adjust this example so that it works best for you.
We learned a lot creating this list together, including that there were some opportunities to find out more about the roles and purposes of some of the supports. The convenience of the list was also something that we later learned to appreciate. We have referenced the list at planning meetings, for applications, when beginning services, and during updates to various plans.
The best thing about the list is that my daughter has this information firsthand and does not have to ask me or her father. When I share the list with those who support my daughter, other adults on the spectrum, and families of self-advocates, I remember the initial fear of placing some of this information in my daughter’s care. We were concerned about her security and privacy – because of the account numbers and personal information – so we made it password-protected in her Google docs. From there, she can share it with whom she chooses.
As things change, we update information. We are going into our sixth year of using this tool, and it is still helpful.
Courtney Chavis, an ASNC Autism Resource Specialist in Greensboro and mom to a daughter with autism, can be reached at firstname.lastname@example.org.