I really want to talk about my childhood, adolescence, and young adulthood as an undiagnosed, moderate support needs Autistic. But I can’t. Because the present is too pressing and the future is coming up quick with zero solutions.
I have been unsupported the majority of my life. When I say this, I do leave out my parents’ role. Because in their support that stretched on and on beyond what is considered “normal” for an adult, many times they were left angry and confused by me and my “immaturity” in retaining steady work. It was always my fault.
To this day I’m asked if I could have “just stayed” a little longer in the job that was literally based on my learning disability (Dyscalculia). I feel it is still not understood-there is no bootstrapping your disabilities. This attitude I think is from the unexamined, unbelievable internalized ableism that looking back, has been the blueprint of both my (boomer) parent’s lives.
I don’t have the energy to educate or explain as if they haven’t witnessed me over 38 years and how difficult simple shit is for me to exist within. I’m not defending my experience-my reality-as if it were a thesis. I am so buried in despair I couldn’t care less about educating anyone in my life let alone disembodied voices on the internet fake claiming people.
As much as I wish there was more representation of Moderate (Level 2) support needs Autistics online, I know why it’s so difficult for me to contribute to that voice.
A section from my report revealing an aspect of my results.
I have daily, intense problems that require assistance and advocating is not on the list when I am trying to understand how to organize care tasks at 38, control my upset and overwhelm, contending with GAD, OCD and Depression.
I don’t understand (literally, not in a hostile way) videos where people describe their ‘mask’ and the activation of it in such a self aware way. I masked very ‘stereotypically’ as a kid and in trying to date and honestly, it only served to confuse me when people were shocked or put off by it. So why bother? I have been myself my entire life and my ‘masking’ is not some revelation or groundbreaking thing to me. But I have also gotten flack for being ‘outspoken’ and ‘tactless’, especially when people get to know me better. I try to not hurt peoples feelings, but I have a limit between not being a dick and just reading someone else’s script for me on how to behave in our relationship. I really couldn’t care less and if you don’t like it, you can leave.
Masking is just a thing I did/do and has no emotional core the way I see others describe it. But I can’t say this-otherwise I will get a bunch of ‘whataboutisms’ or comments about how I am trying to erase high-maskers. This back and forth is not worth my grief or time. I have pragmatic issues that have not ever been fixed and the road to help is paved with inaccessibility.
I need occupational therapy every week and I can’t afford it. Even when I was working 30 hours a week at a warehouse, I was dedicated to my true love of teaching/coaching Jiu Jitsu 3 days a week, taking my work week to 40 hours total ( I include commuting). A third of my income was set for my therapies, which was barely covered before I had my assessment and started OT. Then, rent was over a 3rd, making way for the last bits to cover food and the thing that is actually responsible for my poverty: Netflix (sarcasm).
Im not bitter, I am in daily despair. I know my parents love me and I believe they are reflecting on raising an Autistic kid without knowing exactly what was going on with me. They have never abandoned me but as they age I deeply fear their deaths. Not just because of that obvious grief but because I won’t know what to do. I need to start building supports so I will not houseless. I have little extended family across the globe but they don’t even know what’s going on with me.
I am currently in waiting to see if I will be accepted for the Disability Tax Credit and Provincial Disability Support. Because it doesn’t even matter if I could work full time-there is no growth. My level of fatigue and exhaustion quickly deteriorates my mind and body, compromising daily care tasks like making dinner or not going to bed at 5 pm, destroying the ability to train the amazing gift of Jiu Jitsu which is regulating for me. The promise of a better life is in Jiu Jitsu, but I have a long way to go until those finances solidly support me.
In trying to be normal and productive, quality of life for me does not exist.
There is no option for me to succeed because I have tried so hard since my early 20s and have devastatingly failed to achieve anything related to stability. I am terrified I will not be disabled “enough” in the government’s eyes, despite my Dr’s recommendation and support to apply for both these programs. I am eligible, but it’s up to bureaucracy. I fear that I don’t meet the threshold because I don’t have “daily supports”. But I don’t have them because I can’t afford them. If I got these programs, my life would be changed. I NEED THEM, DESPERATELY. Somebody please help me.
Up until my early 30s I prided myself on doing everything alone but that management system has since broken down and collapsed. My coping has run out, my mental and physical resources have run out, there is no “keep pushing” in me left. I have no interest in romantic relationships due to their inherent hardship, so relying on a spouse is out. I’ve never asked for help because I literally thought to be an adult means to do everything by yourself. I haven’t even touched on how my life is marked by OCD and Depression; seeing friends blow past major life milestones while I can barely scrape rent together or go for banking matters without a support person. Or worse: when they get everything they want and are still not happy.
I’ve just stopped wondering why I have no more creativity or drive to make art. There’s nothing I have left to visually say and is so nothing to me in the face of what I’m dealing with, finally, as it has all been brought to light.