…This is a hard one for me to write.
Can we talk about something for a minute? This is something I keep wanting to bring up here but not really sure how to be diplomatic in my verbiage. It’s something that is kinda serious to me, but I don’t want to come across as combative or like I’m trying to talk down to parents here. I apologise in advance if I step on toes. I’m trying not to, I swear. And I may ramble, because everything is jumbled inside my head.
But can we talk about this “high functioning” autism label?
I used to cling to that label like it was a lifeline. Once I was diagnosed, and my daughter with me, I held onto that term like it was the door from the Titanic and I was Jack. I’d hold onto that until I froze to death, but I was NOT letting go!
Only… I kept feeling like a failure. I kept hearing all these things, reading, about all of what “HFA” people are supposed to be able to do. And I asked the psych why I was “high functioning”.
- Because I can speak.
- I can make eye contact (I stare, which really is not the same thing at all)
- I can be bubbly
- I never meet a stranger
- I can articulate
- I can learn
But there are qualifiers that aren’t mentioned when someone is ‘gifted’ with that phrase.
- I can speak – but I shutdown when distressed or overwhelmed
- I can make eye contact – I got yelled at so often to look people in the eye because that’s what we’re always told meant you were a good and honest person. So I HAD to prove I was honest and good. I learned to stare, or focus on a point slightly off center, to make it seem like I was looking directly when I really wasn’t.
- I can be bubbly – on a good day, when I have faced absolutely NO stressors… or when I’m so hyper I’m jumping up from my seat every other minute. It looks like bubbly, but it’s really hyperactivity.
- I never meet a stranger. This isn’t necessarily a good thing because it means I often am gullible and naive, trusting wrong people because they talk nicely. I don’t often get that old wisdom “not everyone who smiles at you is a friend.”
- I can articulate – again, when I have zero stressors, if I’m in my safe zone, if I know the rules and routine and nothing deviates from that. I’m okay writing, but verbalizing is always a struggle. If I’m overwhelmed or overloaded, that speech goes right out the window. You’ll be lucky if I can move my head in a proper direction.
- I can learn – but only a certain way. I have to be shown several times, and it’s often visual. I can’t just listen to someone or something and remember it. I have to see it and be able to practice it with a mentor.
I’m ‘high functioning’ – but:
I can’t remember to pack gym clothes for my daughter. I forgot today that she needed sweatpants for PE even after being reminded last night.
I can’t keep up with household chores. Three years I’ve lived in this house, and for the past 2 years I’ve been asking for help clearing it out. People love to tell me, “just pick a starting point and do one small bit at a time”. Do you have ANY idea how terrified that makes me? I CAN’T “pick” a spot. I need help. And only one person in 2 years here has ever actually said they’d help, understood that I needed direction, and showed up to help me. I’m still struggling.
I can’t remember when I showered unless I feel my hair and it’s dirty. I make sure my daughter bathes but I always forget. I tend to have a 3 day rule. I know my hair will need washing by day 3, so I know I will have to shower. Or if I have to go out in public anywhere, then I shower.
But I’m “high functioning.”
At work I will lead if there’s an absence of clear and decent leadership. I learn procedure and the rules and literally CANNOT ignore it when someone breaks rules that are for everyone. This makes me difficult to work with, and despite many references from former co-workers, I’m still struggling to find ANY job after over a year since my car accident.
I’m constantly battling suicidal thoughts. I don’t want to die. Understand me. But the guilt, the constant feeling like my daughter deserves a better mother, one who isn’t a complete and utter fucking failure at being a “responsible” adult… Feeling alone, unemployed, unsupported, and a burden to everyone around me.. it’s hard.
This is why I cringe every time I see one of the parents here, or anywhere really, constantly reiterate their kid is HFA.
Because I can’t function the way they say I’m supposed to. It makes me feel broken.
But I’m high functioning, so they tell me.