Questions after a late diagnosis

What does “high functioning” actually mean?

By Jenny Lucas. From my essay Why I’m Done Being the ‘Good Kind’ of Autistic, first published 18 July 2025.

When I got my autism diagnosis in 2022 the psychiatrist called me ‘high functioning’. It is literally written on my diagnostic report. Initially I thought it was a good thing but the more I’ve thought about it the more I’ve wanted to scream. Because it felt like being congratulated for successfully pretending to be someone else. Like getting a gold star for the performance of a lifetime while internally combusting.

The thing it’s important to remember about function labels is that they’re not actually about us. They’re about how comfortable we make other people feel.

When someone says "high functioning" what they really mean is "passes for normal most of the time" or "doesn't make me feel awkward on the daily" or "productive member of society who pays taxes and doesn't rock the boat too much."

But functioning according to whose standards? And at what cost?

I can hold down a job. I can make small talk at the school gates. I can organise a birthday party and remember to buy milk and respond to emails in a timely manner. By most measures I'm "functioning" just fine.

As I’m writing this I’m absolutely exhausted because for the last month I’ve slipped into old habits of trying to be everything for everyone and pushing myself well beyond my actual limits, just to show people that I can ‘keep up’ and not cause any undue stress or problems.

So which version of me is the "real" level of functioning? The one who can handle a full day’s work, 2 loads of laundry and run the household like a boss or the one who can't think straight on a Tuesday morning because doing all of the above has caught up with me like being hit by a bus.

The truth is that, for me certainly, functioning isn't a fixed state. It's not a diagnosis or a category you get sorted into like Hogwarts houses. It's a moment by moment experience that depends on so many variables: how much sleep you got, what you ate, how many social interactions you've had to navigate, whether someone moved your favourite mug, if Mercury is in retrograde (which it is at the minute and boy am I feeling it!).

But here's what really gets me about these labels: they completely ignore the internal experience. The monumental effort it takes to appear "high functioning." The constant translation between your brain and the world. The exhaustion of ‘code switching’ all day every day.

I spent decades being praised for being "high functioning" while having no idea I was slowly burning myself out trying to maintain a standard that was never designed for brains like mine. I was getting A+ grades in masking while failing Basic Human Needs 101.

The worst part about the whole thing is that I started to believe my own performance. I thought if I could just try harder, mask better, be more "normal" then maybe I would finally feel like I had caught up.

What absolute bollocks.

Then I found out I was AuDHD and my whole identity fell apart. Who the fuck actually was I?! Being called "high functioning" felt like being told I was "one of the good ones." It created this artificial hierarchy where some autistic people were deemed more valuable, more worthy, more acceptable than others based on how well they could perform neurotypicality.

And don't even get me started on "low functioning." What a dehumanising way to describe someone whose support needs are more visible. As if the value of a human being can be measured by their ability to make neurotypicals comfortable.

I know people who are brilliant, creative, deeply intelligent people who get labelled "low functioning" because they can't make eye contact or they need help with daily tasks or they communicate differently. I know others who are struggling intensely with anxiety, depression, eating disorders and suicidal ideation but because they can hold a conversation and live independently they're "high functioning."

The whole system is backwards.

What if instead of functioning labels we talked about support needs? What if we acknowledged that those needs can change from day to day, hour to hour? What if we recognised that someone might need very little support in some areas and significant support in others? Spiky profiles anyone?!

What if we stopped measuring autistic people against neurotypical standards and started asking what we need to thrive rather than just survive?

I don't want to be "high functioning" anymore. I want to be authentically functioning. I want to function in a way that honours my brain, not hides it. I want to function at my own pace, according to my own needs, without having to justify why I can write a complex report but can't make a phone call.

I want to function as myself, not as a carefully crafted approximation of what other people think I should be. And I want to feel comfortable with myself regardless of how “high functioning” I am on any given day.

The functioning labels need to go. They're not helping anyone, least of all us. They're creating shame where there should be understanding, hierarchy where there should be acceptance, and pressure to perform where there should be permission to just be.

So the next time someone calls you "high functioning" remember: you're not functioning highly, you're functioning humanly. In all your complex, contradictory, beautifully neurodivergent glory. And that's absolutely more than enough.

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