High/Low Functioning: to label or not to label

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Do you believe we should use the terms high/low functioning when describing autism and ourselves?

I would love if the use of “low-high support needs” eventually supplanted the currently-popular functioning labels as the primary way of referring to how much support an individual autistic needs, but I feel it would be too difficult to get all the NT therapists/clinicians/Autism Speaks employees out there who are used to using functioning labels to change on a whim.

I don't understand the debate or know how it arose.

I don't think autism should be split into just high or low-functioning, but I do think there are people on the spectrum who are more high-functioning than others. So functioning labels do exist but should not be relied on as a concrete diagnostic tool.

I do think there should be some sort of differentiation, because there's a huge difference between people on either end of the autism spectrum, and also people closer to the middle. Perhaps "high," "moderate" (which is what I call myself - I was diagnosed before functioning labels were given out, so I'm really just guessing, I guess), and "low" would be sufficient, or perhaps we need more gradients. I do agree that it would also make more sense if the "levels" were determined based on how much support a person needs.

Coincidence - I just watched a video about this last night! She has some interesting and valid points.

https://www.youtube.com/watch?v=fD5jAwPlSDY

I think it's fine for a self-description. I don't care that much what people say about themselves as long as it isn't misleading or nonsense.

I think doctors should be more descriptive. "Low-functioning" is probably typically autism+ID or some other secondary condition. I think doctors are already making combo diagnoses like that now, so that's good. It's the parents/caregivers who aren't making the distinction between autism by itself and autism+something else that's a problem I think.

The diagnoses should at least point out the most disabling symptoms. Maybe the doctors could rate the individual parts of the diagnostic triad (sensory, social/communicative, repetitive/restricted behavior). Like "sensory: low, social/communicative low, repetitive/restricted: moderate." Then people will know they are dealing with a very sensitive, very atypically social person who is not constantly stimming, and they can plan interventions around that.

Functioning labels are there to understand a person`s needs in a hugely wide spectrum.

If I said bob has problems with his spine, has he got back ache, or is he paraplegic in a wheelchair?

If I said Jane has problems with her eyes, does she wears spectacles to drive or is she blind as a bat with a guide dog and white stick?

There has already been a removal of a label “Asperger’s” and that has caused all kinds of problems that most are aware of that I won’t go into fully here.

Removing Asperger’s has probably scared off many potential employers, as when someone says they have autism on an application form the employer doesnt have a rough idea where they are on the spectrum and what their needs and capabilities are.

The same is true on medical notes for first time referrals.

This is what I wrote on another forum re a question of how functioning vs disabled we were .

What I'd like removed,if it hasn't been already, is any estimation of functioning and needs based on intelligence . In a predominantly verbal exchange with someone I come over as far smarter than most . However in a non-verbal/practical use of intelligence way I'm way lower than the mean . The truth is I do better with support , and would actually be a prime candidate for a group home or sheltered housing without it .

Short verbal exchanges with people , such as MH professionals, give a false picture of well I function . The term 'adaptive functioning' springs to mind . A term that seems to be used far more in the USA than the UK . My adaptive functioning level is significantly below what might be expected based on a short verbal exchange with me .

Varies. It shouldn't be simply something as black and white as 'high/low'.

The discrepancies between it's description and the actual thing of both labels are glaring.
One could just add another dimension of spectrum; separate yet relevant to the spectrum wheel of traits that came from an individual (mainly 1st person).
If one insists the variables of high/mid/low, think one that usually simplifies as;
Severity(1st person) based on personal profiles
Support(2nd person) based on needs and accommodations
Performance(3rd person) based on achievements and outcomes



My own conclusion is that science had yet to find more other ways to measure what makes any individual function and as it is relevant, one that would reflect real time-real life.

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I said "no" to functioning labels.

I did once refer to myself as "high functioning", shortly after being diagnosed, but after some reading on autism I regretted that. There are problems around who decides what functioning label to give and why - because an aspie might be fine self-identifying as high functioning, but to have high we must have low, and the "low functioning" label is hardly helpful to anyone.

The current DSM diagnostic labels are much better in my view, because they describe the level of support one needs. It's like the difference between saying "he can't tie his shoelaces" and "he needs velcro shoes" - taking the emphasis from the deficits of the person to the amount of assistence they require. (Activists would say this is moving from the medical model of disability to the social model).

I'm no activist, but I've decided to adopt levels of support needs instead of functioning levels, I think it's more helpful.