Semi Visible; Fully Valid

"I’m “not disabled enough” for some supports, yet “too impaired” to be fully included without accommodations."

I live in a bit of a grey zone, I am semi-visibly disabled. Even in the autism community I often get overlooked, over and underestimated as well as misunderstood. When masking, people always saw through me and I was treated accordingly: not well. Being a queer person of colour adds another layer of complexity and makes me just that little bit more invisible.

I don’t need 24/7 supervision but I do need meaningful help to function. Not just when things get “bad”, but every single day. I rely on: external structure, sensory accommodations, executive function supports, prompting, and then there are the things I just can’t do. I can’t take proper care of my hair and need someone else to do it for me. I can make myself a bowl of cereal or a PB&J, but I can’t cook a proper meal. I need support to clean my room and I need groceries done for me. I also need a lot of support managing my finances and I can only work part-time.

My disability (autism) is obvious enough that it has alienated me before I've even had a chance to say a word, but not obvious enough that people will label me as 'stereotypical' autistic. I was relentlessly bullied from my first years of school to the end of college. People clocked me as being unsettling, weird and not “one of them” from the moment they met me. And half the time I didn’t catch that I was being bullied until years later sitting with my current friends reflecting.  

The fact that I am multi-disabled isn’t always obvious though, I don’t always use mobility aids for my physical disabilities, I am fully verbal and am relatively attractive. Those three things combined make people think I am more competent than I actually am. I am also often given more than I can handle, and before I learned to say no and set boundaries I took on way too much and ended up non-functional and had severe autistic burnout. (Blog post on boundary setting to come later!)

There are also the times where I would normally be able to complete a task, but become unable to after certain circumstances, like socializing, sensory overwhelm, paralysis, and getting upset when plans change and more.

I’m “too verbal” to be autistic in the eyes of some, but “too rigid” or “too sensitive” to be considered neurotypical. I’m “not disabled enough” for some supports, yet “too impaired” to be fully included without accommodations. Before I had found out I was medium support needs I thought I was a bit of a failure, discovering I was autistic was incredibly eye opening but I was bombarded by low support needs autists that had skills and capabilities that I had only dreamed of having, but I also didn’t relate to high support needs autists, I had skills and capabilities that differentiated me from them as well. I am often talkative and can be left without supervision, for example.

When I discovered I had medium support needs I became hyperfixated on the subject and dug deep to uncover what that was and what it meant for me. I had found my people, my subcategory, a deeper level and feeling of belonging. So I’ve made it a personal mission of mine to speak loudly, to live loudly, and exist as I am at full volume. To seek out opportunities for people like me to be heard and seen, which is what drew me to Life as Us. If I can help one autistic person feel seen and valued, that’s all I could ever ask for.

Being given this space to articulate my feelings and thoughts, to offer my blend of opinion and fact and be heard, it’s so valuable and so special. I am so excited to have this creative outlet and also for a medium support needs, BIPOC, non-binary person like myself to have a voice. 

It took nearly 26 years, but I have learnt that, not only was there a little corner of the universe for people like me, but also that it is more than okay to need help and that the right people will be willing to support you. That there are people who are willing and eager to listen and understand you. You don’t have to contort yourself to fit other people’s understanding of disability or autism. You’re allowed to need help. You’re allowed to just exist.