I was professionally diagnosed with autism as a child, long before the support level system of dx was a thing. I haven't been re-evaluated recently and from what I've seen there is no level specified on my more recent paperwork, it all just says Autism Spectrum Disorder. Because of this I feel weird participating in spaces like this that are meant for people level 2 . I feel like I would probably fall in level 2 but honestly I don't understand what the difference between low support and mid support is.

Like how much support is low support? If you need more support than you get to really function in life but are able to survive (like feed yourself and do the stuff needed to not die) with less support would that make you low support needs? Or does the need for help with stuff beyond basic needs factor in?

​

Personally I am highly verbal outside of shutdowns/meltdowns and have had tons of social skills training so people usually assume I'm "high functioning" when meeting me. Although I still have an incredibly hard time with certain aspects of social communication and interaction, especially non-verbal communication. I really don't have many friends due to that, and the few I do have are also autistic or otherwise not NT.

I do live away from my parents now which I think counts as living independently? But I need to have a roommate around, I don't think I would do well living fully alone. I also receive some in-home support services but honestly even with that support I'm struggling a lot with not having someone around to help all day. I haven't been able to work or go to school since graduating from high school (which took 2 extra years to do), although I desperately do want to go to college. I've been thinking about trying to take 1 class next semester but I'm also worried if I get a re-evaluation of my dx done that will make it look like I'm able to work/go to school and choosing not to, rather than the reality that I'm trying to see if there even is a way to make school work for me.

Currently I don't have meltdowns often but that's because I rarely expose myself to things that trigger them. Things like shopping trips/trips out of the house are usually handled by my roommate/ihss worker, and when I do go out with him I bring headphones and rely a lot on following him to avoid getting lost. He also makes sure I don't walk out in front of cars in the parking lots because I'm usually either distracted by overstimulation or in my head to much to notice what's happening.

I can't manage money myself, the way banks work doesn't make sense to me and I struggle with numbers a lot. I struggle with executive function and memory too so it would be difficult for me to consistently pay bills. So my mom is my rep payee for my disability payments.

I also have what I recently learned is called demand avoidance. Basically every time I need to do any kind of task it adds more overwhelm and anxiety which builds until I meltdown or shutdown. That's my biggest barrier, it's so hard even just day to day to do things when it takes just a tiny fraction of what a NT would do in a day to completely overwhelm me.

​

I have been considering getting re-evaluated both for autism services and additional IHSS hours. I just struggle so much to find a way to explain my symptoms and how they affect me so when I talk to doctors they get caught on how articulate I am but don't even seem to hear what I'm saying about how much I'm struggling to function. Often I can tell them what I struggle with but not how it relates to my autism so they attribute it to other stuff. Even though I know it's related to my autism I just can't find the right words to explain how. It makes me really scared to talk to anyone but my current psychiatrist & psychologist about it.

I have actually now tried a few times to get re-evaluated despite being scared bc I do really need more help, but I have to do it through the regional center here and their application is overwhelming and it's been a huge barrier for me.

I don't have the executive functioning necessary to get together all my old medical records. It makes me a little regretful of insisting on living away from my parents. I wasn't happy with them because my dad is such a dick, but my mom was available to do things like that for me. It's a lot harder to get help now when I need it since my ihss worker isn't always here and isn't always working. My mom was also really helpful in communicating with doctors since she could communicate with me about my needs and relay them in a way the doctor understands.

Anyways this is kind of a huge dump of information that's probably useless anyways since nobody here can tell me what level I am. I just have a hard time understanding what what support looks like for someone with low support needs, in comparison to what supports look like for mid support. High support I can kind of wrap my head around better but the other levels feel really nebulous to me which makes it hard for me to tell whether the amount of support I need and get are low or mid level.

I do plan to talk to my psychologist about this next time I see her. She's just been out of office this week and I missed my last psychiatrist appointment due to being sick so stuffs been on my mind a lot and I just need to get it out somewhere.

​