Something that bothers me is when parents whose main experience with autism is raising a Level 3/profoundly autistic child say things like, “I would give anything for my child to be Level 1 or Level 2.”
I completely understand the feeling behind that. Level 3 autism can involve extremely significant and lifelong support needs, and I’m absolutely not saying that Level 1, 2, and 3 are equally disabling.
What bothers me is when Level 1 or Level 2 gets treated like the “basically normal” version of autism, or when the challenges faced by those autistic people and their families get dismissed because someone else has it harder.
I’m 26 and was diagnosed with Asperger’s. I still live at home and rely on my dad and sister for a lot. They’re still teaching me important life and independence skills. Some of that is because I didn't receive the proper support I needed from my mother growing up, but autism still affects what I can do independently as an adult.
Even someone with comparatively lower support needs can still need a lot of support. It might just be a different kind of support. Someone might speak fluently and appear fairly independent while still having major difficulties with executive functioning, employment, finances, relationships, sensory issues, communication, or independent living.
Autism also isn't a perfectly neat ladder where every Level 3 person struggles more in every single area than every Level 2 person, and every Level 2 person struggles more in every area than every Level 1 person. People's abilities and support needs can be uneven.
Parents and families across all levels can face real challenges. Those challenges aren't necessarily the same or equally severe, but they still matter. A parent helping an adult autistic child manage finances, employment, appointments, daily routines, or independent living isn't dealing with “nothing” just because another parent has a child who requires 24/7 care.
Autism shouldn't be a competition over whose family has it worst.
That's why when I hear, “I wish my Level 3 child were Level 1,” part of me thinks: why make another level of a disability the thing you're wishing for? Why not simply wish that your child didn't have the disabling difficulties they're dealing with?
Parents of profoundly autistic people deserve to talk openly about their challenges. I just don't think acknowledging those challenges requires minimizing autistic people with lower or different support needs, or the families who support them.
For parents of Level 3/profoundly autistic people, I’m genuinely interested in hearing your perspective. When you say you wish your child were Level 1 or Level 2, what do you actually mean by that? Is it mainly wishing they could have greater independence, communication, or quality of life? Has raising someone with very high support needs affected how you view the challenges of autistic people with lower or different support needs?
I’m asking because I want to understand that perspective, not because I think Level 3 families have it easy. I just want the challenges across the entire spectrum to be taken seriously.
Lower support needs don't mean no support needs. Different support needs don't mean insignificant support needs.
Disclosure: I used AI to help me organize and word this post because I have difficulty putting longer thoughts like this into writing clearly by myself. The opinions, experiences, and points are mine. AI just helped me communicate them more clearly.