Stop using the word Profound to divide us

I’m a late‑diagnosed autistic adult, 46, with Bipolar, extreme anxiety, personality trait disorder, ADHD and CPTSD. I don’t have an intellectual disability (ID). I’ve survived serious suicide attempts and still struggle with suicide ideation. Coming to terms with a late diagnosis at my age is hard enough; doing it in a society that barely understands autism makes it harder. What hurts most is when the word “profound” gets thrown around as a badge of legitimacy (often by people in our own community) in ways that silence autistic adults like me.

The word “profound” isn’t a free pass

– Dictionary meaning: “profound” = “very great or intense.” That’s the ordinary-language definition.

– Clinical meaning: “profound” is a specific severity level within intellectual disability (on a spectrum from mild, moderate, severe to profound). It isn’t a synonym for “autistic”, and it isn’t a catch‑all for “hard to support.”

– Research shorthand: “profound autism” is a contested descriptor sometimes used for autistic people with very high support needs (often minimal spoken language and severe ID). It’s not a formal diagnosis.

Here’s the problem: in everyday conversations, “profound” gets weaponised. It’s used to imply that only autistic people with severe ID are “truly autistic” or “really struggling,” and that autistic adults without ID should crack on and be quiet because we “cope” or “function.” That’s gatekeeping, pure and simple. And it’s wrong on both language and substance.

If we’re using the everyday definition – “very great or intense” – then yes, the impact of autism on people like me is profound too. Masking, chronic burnout, complex trauma, mental health problems and the brutal statistics on suicide risk among autistic people without ID are not minor footnotes – They are profound realities.

The quiet crisis you don’t see

High support needs are visible. Lack of speech, constant supervision, complex medical care, these are front‑and‑centre struggles, and they deserve resourcing and respect. But many of us without ID live a quieter crisis:

– We mask and camouflage to survive workplaces, schools, family expectations amd just day to day living.

– We get dismissed because we “sound fine” or “look capable,” so our needs aren’t believed.

– We are diagnosed late, after years of misdiagnosis and harm.

– Statistically we carry more co‑occurring mental health problems- depression, anxiety, PTSD.

– We face striking suicide risk; studies report risks up to 9 times higher than the general population for autistic individuals without ID.

Is that profound enough for you?

Pretending these realities don’t count because they’re less visible is not only sickening – it’s dangerous. Words have consequences: funding decisions, clinical thresholds, DWP assessments, reasonable adjustments, even how family and teachers respond day to day.

How “profound” gets misused – and why it hurts

– It erases lived experience: using “profound” as a trump card sidelines autistic adults without ID, especially those who communicate best through clear, literal, black‑and‑white language.

– It distorts priorities: it turns support needs into a hierarchy of moral worth instead of a practical map of what each person requires.

– It blocks unity: it sets parents and carers of high‑support‑needs children against autistic adults without ID (which I have come across a lot) when we should be pushing together for awareness, understanding, and reasonable adjustments.

– It harms access: professionals hear “high‑functioning” and close doors – NHS waiting lists, autism pathways, mental health services, Access to Work, EHCP processes. The wrong word can cost someone care, and even worse!

A way forward: precise words, shared fight

– Use “autistic with intellectual disability (ID)” and “autistic without ID.”

– Describe needs: “needs 24/7 support,” “requires assisted communication,” “needs low‑sensory workspace,” “needs flexible scheduling,” “needs trauma‑informed therapy”

– Remember communication differences: many autistic adults (like me) rely on clear, literal, unambiguous language. Speak to us, not about us.

We’re on the same side: parents, carers, autistic children, and autistic adults – both with and without ID. We all want better understanding, realistic adjustments under the Equality Act 2010, humane health and social care, and a society that stops punishing difference.

My reality, plainly

At the age of 41, when I was diagnosed, the impact was life-changing – some better, some worse. I understand through words – clear, direct, black‑and‑white. When “profound” gets hurled around as a gatekeeping term, it adds to my struggle and to the struggle of many others like me. The impact of autism on my life is intense. My mental health challenges are intense. The trauma of surviving suicide attempts is intense. By any normal definition, that is profound. So please don’t use “profound” to decide whose pain counts. Use precise language to describe support needs, and keep the door open for all of us.

In 2025, we should be fighting as one for equality, not just for how it impacts you or your bubble. We have a far greater understanding of autism now, so let’s use that to make real systemic change in society. Choose words (especially when communicating with autistic individuals) that open doors, not slam them shut.