CW: self harm, eating disorders
Earlier this week I posted an article detailing some clashes between autistic self advocates and parent advocates about whether it was appropriate for self advocates to represent the autism community as a whole, especially because (in the perception of parents) if a person is capable of engaging in self advocacy, of being part of a committee, of speaking for themself, and of intellectually understanding and pushing for civil rights, they are not even on the same spectrum as a child who will never live independently and has severe needs.
I am not the first person to explain why this is so very very wrong. You say that we are not like your child, but when we tell you the ways that we are, you discount our abilities. You say that we are not like your child, but when we show you that functioning depends on context, you demand conformity to neurotypical behaviors.
But I think that I am a particularly good example of why “you’re not like my child” is such BS, because no one has ever accused me of being high needs or dependent or any of those other awful words. I present as highly competent and highly functional, and I flew under the autism radar for a very long time. In fact I flew so under the radar that no therapist ever even brought up the diagnosis to me. I brought it up to them.
I was successful in school, I have always lived independently, I have always had a job, I have always had friends, and I have always had romantic relationships.
I appear incredibly high functioning because I am productive. I hold down a full time job and I freelance. I write a blog. I record and edit a podcast. I build websites. I volunteer. I am a public speaker. I do crafts and art projects. I create a great deal of output that people can point to and say “look how productive and functional she is.”
But autism nearly killed me.
How could something that doesn’t keep me from earning money or getting a degree or having relationships cause so much damage?
Before I was diagnosed, my mind was a hellish place to be. I don’t remember much clearly from the five years between the ages of 18 and 23. I do remember how nearly every moment of my life felt painful. Every moment I was a second away from feeling vehement hatred for myself, an overwhelming emotion that left me almost blinded, and desperate to rip out of my skin, destroy my body, or disappear entirely.
Being on the brink of suicidal for five years is exhausting. Externally it might have appeared that I had a reasonable quality of life, but internally I cannot express how deeply awful it felt, constantly. I spent years of my life counting down the hours until I could cut myself again, doing it daily if not multiple times in a day.
If it hadn’t been for the aggressive support system of my family, I would have killed myself.
Why? Because I was constantly feeling as if I couldn’t navigate my social systems. I felt lonely and empty and pointless because of perseveration and missing social cues. I was on sensory overload far more of the time than I realized. I didn’t get that I could stop and try to fix these feelings. They were just what living felt like to me. It was like my life was one neverending meltdown, but I had to get up in the morning and keep going because there were no other options.
And this whole time I was going to college. I graduated in three years, double major. I was published. I held a job. I had boyfriends. I had friends. I went to extracurriculars. Many people point out the fact that functioning is uneven, that you may see when someone is at their most functional but miss that at a different time, with different supports, they are not as capable. Someone could look highly functional in one setting, but require significant supports in a different setting.
But functioning labels miss even more than that. They completely overlook quality of life. They forget to think about what accomplishing a given task takes out of a person. Sure, I was functional, but every day for years I was on the brink of suicide (which I would argue is the least functional thing you can be).
I tapped out every resource that I had to keep going through those years, and every day felt like I was expending energy equivalent to climbing a mountain. Giving me the supports that a “lower functioning” person more visibly needs has improved my quality of life by leaps and bounds. Saying that they are “higher need” than I am misses that the impact of supports in my life has literally been night and day, the difference between spending every day wanting to die, and finding myself actually feeling joy on most days.
It’s the difference between being incapable of feeding myself, and refusing food for five years, and today, where I eat a reasonably healthy diet, intake food regularly, and even cook at times.
So yeah, I COULD survive, for a while, as a “functional” human adult without supports. But why should I? Why should I have to suffer because I’m really good at doing things that feel awful?
The presumption that I don’t understand what it’s like to be seriously disabled, that my condition is less serious, that I do not need supports…these are the things that lead people like me to go undiagnosed, to spend years of our lives in deep, dark depression, and sometimes even lose those fights. Functioning labels fucking kill, and that’s not a god damn exaggeration. Your assumption that I am not like your child dismisses all of my struggles. It disrespects not only me, but all the invisibly disabled people out there.
I am like your child. I struggle. I require supports. I require understanding. You do not know my life.