On labels
Last night I read a post on IG by an Autism advocate about the label “Profoundly Autistic,” which is often used to describe Autistics with much higher support needs than someone like me. These are autistics that rely on physical and technological and human supports to live their lives. I don’t like the label at all. Not because I am against labels. I’m actually not. I don’t like the way the current functioning labels work and I don’t think they are giving a ton of dignity to those they describe. Profoundly Autistic is better to me than Level 3 Autistic but it still doesnt offer any insight into what someone with those labels might need. I’d like to propose new ones.
I think we should base our labels off how reliant an autistic individual is. We could say “Independent Autistic” for those of us currently classified as Level 1. Then it could be “Reliant on Support Autistic” (you could even add what type of support), and “Vitally or medically supported Autistic.” I think Vital is a better word than profound for this purpose. Words matter so much and I find that one of my gifts is finding the right word for the job. I also think these labels offer information that is actionable and that should be the purpose of a label. A label that does not make anything clearer about how to proceed or group things is a pointless label used only to create the sense of other.
Until I had kids I was an “Independent Autistic” but I am now a “Reliant on Support Autistic” because I cannot have a full time job and cannot do all the tasks required for me to be a part of society as expected always. My husband supports me financially and if he didn’t, I don’t know where I’d be. Some days I cannot feed myself or do any hygiene tasks. Some days I cannot control my trajectory or emotions. But, my support needs are nowhere near the level of support needed by Autistics who are non-speaking or who require medical support. I am able bodied for the most part, though I live with chronic pain. I am high masking and able to deliver what is expected in many circumstances. It may take a toll on me, but I can still do it. I am gifted as well as disabled. Not every Autistic is gifted, that’s such a misconception. Those that cannot self advocate like me need people like me to advocate for them. Functioning labels are not great because they really don’t help people understand that our capacity fluctuates based on our load and sensory input. I have a spiky skillset. Some days I am highly disabled, others I am not. If when diagnosed I am simply given one label and told to use it in all settings, it will not be accurate. Labels should reflect the fact that Autism is not static. It is a difference in operating system and you cannot just determine at assessment what our systems can and can’t do with a single number. It just isn’t a real reflection of what’s happening.
If you want to come at me for suggesting labels at all, and you want to argue against labels, I want to challenge you to talk to some people in the “profoundly autistic” world. I promise their opinions on the matter differ widely and those of us that have the ability to speak and those that claim autistic gifts are superpowers, well, we’re actively denying the experience of those more disabled than us and what I’ve learned along the way in this journey is to listen to those who are impacted more, most, and let them lead. Being the most verbally capable of a group does not mean you have the right to speak over others. I’m not a fan of neurotypical parents who use their kids’ autism as a badge or indicator of their own difficult experience in public, I don’t like parents who spend their energy talking about their child’s autism makes their lives harder. But grouping all mothers of non-speaking autistics as “autism moms” is not helping anyone gain proper supports. There needs to be a lot less name calling, a lot less defensive posturing, and a lot less fear of disability and being disabled. I am PDA AuDHD and I am disabled. I am gifted but my gifts don’t cancel out my disabilities. Others out there are more disabled than me. My abilities cannot erase their experiences or struggles. Their larger needs do not diminish or erase mine. It is not a competition with an award for most autistic. Autism doesn’t belong to any of us solely. We all experience it differently because it is the framework, not the outcome. People need to stop seeing the behaviors and outcomes only and they need to start understanding the underlying structure of Autistic people is fundamentally different not just on a neurological level. So many of us have divergent biologies and bodies. The co-morbidities that frequently come along with an autistic diagnosis are not coincidence. We are not just neurodivergent, we are divergent in so so so many ways. And we are legion with more of us coming every day. The world had better start listening to us.
Images are of a 2024 sculpture from a body of work exploring how we have to look a certain way on the outside as women, appearing together at all times in order to appeal, but on the inside we’re often a mess.