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

Yes it is difficult to give a name to really. I function well enough to live alone and have a job - many would say well that is high functioning, where is the issue. But to maintain that function puts a huge toll on my mental health so am I really functioning that well? I also still struggle with some really basic things whereas I find some things others have difficulty with easy. I still need support if I have a meltdown. 

It’s not a term I like or use.

The term is disrespectful to those who may have higher support needs than myself. Anyway, what is a fully functioning human being? Does high functioning” mean “fully functioning” or does it fall short of “completely functioning”? By this thinking, those who aren’t “high functioning” would presumably be classified as “low functioning”. What a horrible thing to say about anyone, as if a person’s value is intrinsically connected to their function.

I agree with you that it could clarify things, if people who are meaning they don’t have a learning disability, would say so.

Myself, I was tested in house by the NHS in 2015 for autism and after that started living as with autistic traits. I was formally diagnosed later. I didn’t read online on forums until I was diagnosed.

It seems like forums can be a good support platform for those who are diagnosed. Some people though may be can start to compare more who remain online around this area much after being diagnosed. This can be positive or negative for some people. You can start to compare, not just here but generally with research. People should be living their lives at the same time.

People have genuine reasons why they may not like the terms, but I think this becoming somewhat of an expert on the subject and posting online may make it more challenging at times.

Expecto_Patronum said:

There are some people crying out for a separate diagnosis for profound autism for those autistic individuals with significant learning difficulties and support needs.

Ideally, people should be assessed for their support needs and other problems taken into account. The nearest thing I can think of is physical disabilities, where people may have a range from (say) a walking stick to a full care package. Such assessments are routine and more easily accessed than gaining support for different brains. Sadly, our NHS struggles with an equivalent range of mental supports. When it was set up, the major problem was dealing with the physical injuries of casualties from the Second World War and it hasn't really moved on to give the same attention to mental needs.

Expecto_Patronum said:

There are some people crying out for a separate diagnosis for profound autism for those autistic individuals with significant learning difficulties and support needs. Would this help with this issue? Or would it just be the same issue with different terminology?

I think it may be helpful. The spectrum is wide, the perception of it shifts slowly, but still it's hard for many people to comprehend, how much it varies. I heard of stories, where a person with higher support needs or their caregivers were not taken seriously, and told, that autism is just a quirk. So the terminology, whatever it is- is important. Even for me it would sound diminishing, because my difficulties are also not just quirks, but I can function to some degree. 

I don't think it's a very useful term. It makes it sound like we don't require support at all rather than just needing less than others on the spectrum. In fact I think it makes it sound like we manage better than neurotypical people. I certainly don't. It also backs up the idea that the spectrum is linear and ha 2 ends.

I agree with you that it and the levels do not show how much our needs can vary. I don't think either is a useful system. I do completely understand that there are individuals that require significantly more support than I do though but how that can be easily communicated I'm not sure.

There are some people crying out for a separate diagnosis for profound autism for those autistic individuals with significant learning difficulties and support needs. Would this help with this issue? Or would it just be the same issue with different terminology?

Jalapeno said:

NAS - any thoughts on running a poll on this ?

If you click on "Insert" there is an option to run a poll on a post. Haven't tried it myself though.

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I personally prefer the terminology related to support needs.

In many cases, with the right support, you can shift towards higher functioning. (And the opposite).

In other words, "Support Need" it calls for a more proactive approach.

I think that the "high functioning " is about support needs, in this case- low support needs.  It's tricky, they often change over time. Mine do. But it's very I.portant, to emphasise,  what level of support needs someone has, even if the levels are not perfect way of describing them. The spectrum is so wide, that it's absolutely necessary. I want to make it clear, that I don't need assistance 24/7, and caregivers of someone,  who does also need a simple way to describe it to institutions while asking for support. 

I associate The term "high functioning " with a device more and not with human. But I don't get offended if someone uses it and I might have used this term myself.

There is an obvious difference between an autistic person capable of functioning effectively in society for most of the time and an autistic person who has no ability whatsoever to live an independent life. This is just a fact, not an opinion. It is human nature to look for short and simple terms or phrases to encapsulate this difference. However, any word or phrase trying to do this will fail in some manner, some of the time, for some people. This is an inevitability. The upshot of this is that I understand why the phrase 'high functioning' is used and accept that it is a flawed shortcut towards describing something that is real. I tend not to use it, because of its limitations and inbuilt inaccuracy, but I also do not condemn people who do.

I have been ok if other people have used these terms.I have found them helpful. I think in some peoples cases it means that they are ASD 1 or were aspergers previously. I know people can vary and you are less likely to find someone with just one score on their sheet. However, I was diagnosed by the NHS using ADOS and they had for the all categories levels from 0-3. I found this helpful to know where I had more difficulty. It also allowed to after support by the NHS as they those who were level 2 and above to get support for category, and I got that support because of my scores.

I wouldn't want to use it because it's vague and seems to be from the allistic viewpoint. I'd prefer high masking, although that hides the pressure of masking. Autistic is simpler. 

When I was given my diagnosis I was just told I am autistic and then the reasons why, no levels. I am happy with this. 

Jalapeno said:

NAS - any thoughts on running a poll on this ?

The NAS has already looked into use of the term "high functioning", and found it to be inaccurate and considered offensive.

Their related guide explains why "high functioning" is not preferred:

"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:

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. "

That’s from this guide, which also covers many other forms of language and terminology around autism:

NAS - How to talk and write about autism

Jalapeno said:

I'm also not convinced that the Levels 1, 2 and 3 always solve the problem

It's worth mentioning that those levels are only included in diagnoses that have been carried out in accordance with the latest DSM classification manual, which is mainly used in the USA, but also in some other countries.

Some Right to Choose providers in the UK do use the DSM. But the NHS in England, for example, uses the ICD classification. The ICD-11, published by the World Health Organisation, is the latest version. This, or the ICD-10 (the transition from 10 to 11 is still either pending or in progress in many places) is used by lots of countries around the world.