What are your thoughts on the term "High Functioning"?

I didn’t notice that mistake until now, otherwise I would have highlighted it. 

I know of an author who has used this illustration in her book so I will check that out.

Appreciated - I'm here to learn and this is helpful, thanks. 

It’s unfortunate that, in what could otherwise be a great resource, the author uses “neurodiverse” wrongly. (I’ve seen it before, and avoided sharing it for that reason, although I liked the rest of it a lot in respect of explaining the wheel concept).

Acquiesce said:

I'm autistic (or perhaps even neurodiverse?)

Just to clarify, for Acquiesce , here’s some information on the language around autism. which I hope is helpful:

"It is common for words related to neurodiversity to be misused. For example, people might say ‘Autistic people are neurodiverse’ when they mean ‘Autistic people are neurodivergent’.

Examples of accurate phrases include:

Humans are neurodiverse.
Autistic people are neurodivergent.
Autism is a form of neurodivergence."

NAS - Autism and neurodiversity

On a related note, in case it’s of interest, "allistic" is a term that we can use if and when we want to refer, specifically, to everyone who is not autistic.

Neurodivergence / neurodivergent is commonly understood to cover people who have one or more of lots of different conditions (including autism, ADHD, epilepsy, and OCD, for example). And the kinds of differences / struggles that we can experience - as autistic people - aren't necessarily shared by all other neurodivergent people.

So, often, to get our meaning across, it can be clearer to just refer to ourselves and others specifically as autistic people, if that's the condition that’s relevant to the point we’re making.

I’ve posted the Understanding the Spectrum colour wheel previously but I thought it would be worth highlighting again. It illustrates how the term “high functioning” (disrespectful language aside) falls short as a descriptor. All autistic people have varying levels of support needs that are circumstance dependent. 

https://the-art-of-autism.com/wp-content/uploads/2017/11/UnderstandtheSpectrum.pdf

While I've never looked at the model as it is defined by those who made it, I find the concept of the nuerodiversity wheel on point, given the overlap between ASD and other nuerodiverse conditions. 

I'm not sure how helpful that is in this particular debate, but I think that, if set up and assessed against correctly, could be a good tool in a needs based assesment system...

Perhaps that would in turn bring with it more needs based terminology, in that the area(s) of most need would become the things talked about: ie I'm autistic (or perhaps even neurodiverse?) with a high social communication need.

I wonder if that would be more helpful? I haven't done any research around it or anything - I literally had the idea years ago when looking at a hop flavour characteristic wheel and then discovered it was a(n early) thing!

Great thread idea. 

First, I don't wish to suggest people shouldn't identify as they wish, but I absolutely see why this term can seem and feel challenging to many. 

I myself prefer to think of this in terms of how autism affects individuals and how much the impact of it brings a challenge to any given person realising their life as they choose. In many life areas my symptoms mean I can function well, yet in others daily life is vastly challenging. I imagine something of this notion may resonate with many. 

Also, the term cannot help but draw a contrast with non-autistic people (I use this as a term of convenience, not suggesting anything) in the sense that the 'higher' the functioning, the 'less' the impact and/or severity of a person's autism. This is not meant as a value statement, rather how it seems to me. 

Language itself is a limiting factor in many debates of a parallel nature. As in, nothing wrong with comparing oneself to a benchmark of ~asymptomatic for the sake of making sense of or explaining how autism affects an individual. But I am challenged in thinking of any way of expressing this idea that wouldn't be seen with possible negatives by some. 

My approach is to focus on intent, learning and understanding. I seek to assuage offence where none was intended, and to explain why something upsets me when it does. I find similar challenges where it comes to LGBTQ+ terminology, and from philosophy, many if not all areas of human discourse. 

Please don't read any of the above as advice or suggesting I'm right about anything. My aim is merely to stimulate healthy, respectful thought about such a complex matter.

You have just highlighted exactly why diagnosis with levels, or unofficial descriptors like ‘high functioning’, are unhelpful for many of us. 

TheCatWoman said:

Obviously some people who are autistic are profoundly affected and have higher support needs, but for the rest of us, it seems like whatever level they decided we are, if any there are massive great cracks we fall down and find it hard to crawl back out of, if we manage at all, or don't fall straight back in again.

I know you weren’t in to the idea of the spectrum looking more like a ‘colour wheel’. For me, there is nothing better available that I can use to illustrate my strengths and challenges.

Oh good, someone else who detests the big bang theory, I don't like any of those nerdy post irony "comedies".

I don't think it makes any difference where you are geographically, people are either rude or not bothered.

What I find complicated is how to deem support needs: I wonder how tied into current individual circumstance they are? For example my own support needs would be currently classed as very low, but take my partner away and I fear they would be much higher.

Suppose my point is needs are transient (while appreciating I'm very lucky to have my partner).  

Regardless, hopefully the system continues to evolve for better. 

When I see a post that says high functioning I tend to ignore it, as I think it will be something about someone who is more intelligent than me. I think of a very complicated description that I wouldn't understand. 

The levels (from the US-based DSM) actually indicate differing levels of support needs, so are similar to what the NAS found in respect of the preferred wording to use instead of "functioning" labels:

3 - Requiring very substantial support
2 - Requiring substantial support
1 - Requiring support

It does also suggest that it might be helpful, where they differ, to provide separate levels for each of a) social communication and b) restricted, repetitive behaviours.

That does seem like a much better way of classifying need away from the whole 'functioning' thing, which I think is a crude term.  

I've found the American based levels system interesting, though suspect if I were to dig deeper I'd find it's probably also rather flawed?

In terms of diagnostic terms, I meant once Asberger's was done away with, it became a catch-all term for what I (perhaps incorrectly?) think was previously classed as Autism without learning difficulty? (I'd genuinely welcome any input here if I'm way off the mark about that Asberger's/learning difficulty thing.)

I didn't know about the diagnostic manual thing - that's interesting - I'll read more...

With huge apologies, I've just realised that - in my first reply at the bottom of this page - I forgot to include what the NAS does recommend using instead of "high functioning" or "low functioning" !  [horror / scream]

I can't edit that reply now, but perhaps it might be helpful to share the full entry now - perhaps one of the suggestions might work for you in situations like that:

"Based on based on our language research on the preferences of autistic people, their families and professionals, as well as the feedback and insight we get from our supporters and wider work: 

Do say:

- autistic person with high/low support needs
- an autistic person with/without a learning disability"

Avoid saying:

- high/low functioning autistic person
- mild/severe autism

Explainer: functioning and severity labels are inaccurate and considered offensive; they fail to capture how a person’s needs may vary (they may excel at certain things while finding others very challenging) and fluctuate (according to the situation), and because they locate all challenges innately within the person’s ability rather than due to a societal or situational failure to meet the person’s access needs. "

NAS - How to talk and write about autism

Acquiesce said:

I think it's probably just replaced the term 'Asperger's'

Just to clarify, "high functioning" has never been a diagnostic term, either before or after Asperger's was used.

Acquiesce said:

due to that being (rightly) phased out due to its background.

Also, just for info, Asperger's was removed from the diagnostic manuals for clinical reasons (because it was recognised as being part of the autism spectrum, with no need for a separate term) - not because of the historical facts that came to light about Hans Asperger.

I think it's probably just replaced the term 'Asperger's' (spelling?), due to that being (rightly) phased out due to its background.

Fwiw I dont like that it's degrades from what likely remains a high level of need, but accept that there are autistic people out there whose needs are far more severe and require much more support... I think some form of separation is useful, but wonder if the terminology could be improved. 

I don't like it, but it's necessary. Peoples perception of the word autism greatly differ, and the older the person, the more autism is seen as (their words not mine/paraphrasing) non verbal and "slow". Likewise the older the person the more likely they are to have a position of power and I've heard everything from "How can you talk if you have autism?" to "I wouldn't employ an autistic person but am doing so as my nephew is", and I'll back that one up, a manager told me that at Poundstretcher at my very first job some ten years ago.

It's why I tend to use the term "Aspergers" (which I detest with every fibre of my being) around new people as well. Maybe down south and in more affluent areas the perception is different but from my experience using the term "high functioning" makes them think you're the "nerdy" style of autism ala Sheldon Cooper (and I also detest big bang theory as well).

KinksFan said:

I'm what experts would call high functioning

Although I’m not sure which experts you’re referring to, it might be helpful to know that “high functioning” has never been a diagnostic term.

You might find the NAS’s advice (in my reply at the bottom of this thread) helpful. It reflects the views of professionals / experts, along with those of autistic people and others.

I'm what experts would call high functioning.  I don't always feel that way.  It takes me hours to clean my place.  I can only cook simple meals.  Some days I have meltdowns and I break down and cry.  I can't do small talk for the life of me.

I can cook, shop and run a house, I was self employed too and have had various jobs, never a career, I have a degree and I drive a car, on the surface those things may make it appear that I have no problems, but scratch the surface and the toll those things have taken on me start to show. I was self employed because I'm not very good at being an employee and have been sacked or "let go" of every job I've ever had, often its been because I just don't fit in, or I can't handle the hours, or having to be in the same place at the same time everyday causes panic and a melt down. Some things of course I'm just not very good at and just don't understand. I drive a car, on local journey's but not long ones and never on motorways or other bsuy roads, I can't I have a melt down and thats really not good in the middle of a motorway. I had lots of learning support when I was at uni. So whilst on paper I might look "high Functioning", am I really, when I have so many limitations on what I can and can't do? 

What about the things that I really cannot do? Like tech or anything mechanical, or that requires attention to fine detail, I am unable to see enough even with corrective lens's. Do things like the ability to let more ait out of tyres than I put in class as an amusing and sometimes irrating foible, a learning difficulty, or me being deliberately difficult? I get accused of being deliberately difficult quite often, even on here, by people who refuse to believe that I really can't do some things. 

I was diagnosed before things like levels existed, I was just told I'd coped for the last 50 years and could continue coping. Is that all the is or should be to life, just coping?

What about when the physical and autism collide and gang up on me? 

I wish there could be drop in places with people that could help with the things I can't do or find difficult to do, like filling in forms, theres nothing quite like a form to turn me into a jibbering wreck Where does that sit on the function level?

Obviously some people who are autistic are profoundly affected and have higher support needs, but for the rest of us, it seems like whatever level they decided we are, if any there are massive great cracks we fall down and find it hard to crawl back out of, if we manage at all, or don't fall straight back in again.