In my own way, it would seem contrary to my best interests to describe all the ways life has defeated me. First there is the uncertainty surrounding my future and how I will manage to take care of myself when my parents are no longer around. I know this worries them, but I am also concerned about who is going to help take care of me. I would naturally consider my sister, but she’s made it abundantly clear that she wants no part of this. I remember overhearing my parents talking about this, and how worried they sounded when the issue of my care came up. Probably they figured that my sister would step up, but with all her animosity and teenage angst, it seems very unlikely. Knowing in my heart that she considers me a burden hurts a great deal, but I would rather know this than be misled or worse, put into some kind of home or center where I have no rights or say in how I spend my time.
Second of all, I am pretty lonely at the moment. I am so glad to have been able to attend regular high school classes and meet some pretty great people, but I also wonder what it would be like to be in class with my people – that is to say, autistics – and taught by autistic staff: sort of like an autistic Gallaudet University or a historical Black college like Howard University. The amount of pride I feel in my identity is strong, so imagine what it would feel like to be surrounded by hundreds of proud autistics and mentored by those who came before us? I can only imagine and fantasize what that would be like. But don’t get my dream confused with self-contained classrooms, as these are so often driven by a deficits model that doesn’t seem to consider that one can be perfectly content never not being disabled. I visited one when I was younger, and the lack of any energy or joy was so depressing that I believe I would have been diagnosed with depression or even PTSD at some point.
Third, I very much want to learn how to rely on others less and start taking more control over my anxiety. It’s feeling more manageable than in the past, and my mood has definitely improved, but I still have so many rituals that drive my family crazy. I am hopeful that as I continue to take meds and simplify my life, get good sleep, exercise, and listen to good books on Audible, my anxiety will be better controlled and I won’t feel so stressed.
Really though, only these things get me down from time to time. For the most part, I have it pretty good. Considering that my life was pretty different a mere five years ago, who knows what else is in store for me? For example, I am waiting to hear if my application to serve on the Interagency Autism Coordinating Committee [IACC] is accepted – if this happens, I think I would be the first minimally-speaking autistic to be included. This means I could share my perspective with others who advise the government in funding autism research and hopefully give attention to issues like future planning, independent living, and curbing loneliness in people who are disabled. For me, this would be an incredible opportunity, and I hope to have good news in the coming months.