Published on 12, July, 2020
We often get posts on the form asking for advice with autistic children. And I can't help but notice the requests overwhelmingly relate to low functioning autistic children. As someone who is quite high functioning and had a very disrupted and turbulent childhood I can guarantee you it's not because high functioning autistic children don't have just as many issues. Nore is it that high functioning autistic children are particularly rare. We recently had a discussion on this point in another thread and figures I dug up indicated around 40%+ of autistic children being diagnosed these days are of average or above average intelligence.
So the question I'm asking is this. Why don't those parents come looking for help? Is it because the main stream schooling and support systems are so much better at supporting high functioning children? I doubt it. Is it because they tend to think of their child’s behaviour as 'naughty' not 'autistic?' Is it maybe they don't accept or agree with their child’s diagnosis? What do you think it is?
More to the point:
Edit ps: For the simplification of this entire discussion and to avoid a long drawnout arguments over semantics. Instead of high functioning we shall say high IQ meaning an IQ of 85+ and instead of low functioning we will say low IQ meaning an IQ less than 85. As measured on a standard clinically approved IQ test.
If I remember correctly, some of the latest figures on intelligence in autistic people (difficult to measure accurately!) suggest 40% above average intelligence, 38% below and 22% around the average. This suggests that autistic people tend to cluster towards either extreme, rather than towards the middle ground.
The problem is that human beings vary hugely in abilities and highlighting this with labels is, at the very least, concise and can be helpful in some circumstances. Better labelling in the case of so many institutions which aim support at 'autistics and people with learning difficulties' would be helpful, as it conflates two sets of people with a rather limited overlap and widely varying needs.
I think terminology is important but a small correction would probably be fine as the person talking might not have a huge vocabulary or
I understand what you mean, but I don’t think that a small correction of language would be enough to illustrate the harmful impact of using functioning labels to describe human experience.
Language is very powerful, which is why I get frustrated alot when Im having to speak (im better online) because I can never seem to find the right words for even simple things. And having something as sensitive as discussing neurodivergent conditions, It can be even harder to feel like I can talk about something im wondering. I think terminology is important but a small correction would probably be fine as the person talking might not have a huge vocabulary or ability to retrieve words. Anyway, I agree with you but that we could not be too upset at someone for an honest mistake. Im not saying you were getting mad, I know you were giving a sugestion for a better word to use
Martin said:To pretend that these three groups, and I know it is an oversimplification, have the same abilities or support needs is simply futile.
I agree, and I am particulary concerned by the policing of terms, as demonstrated here.
Martin said:The nomenclature surrounding autism is in great need of some improved clarity
Indeed.
Well put but a concensus on terminology needs to be reached, which may be impossible.
I agree that using the term 'support needs' is better than saying 'functioning
Absolutely!
And sometimes people cant think of the right words, so they might say something that isnt the best term but it gets their point across.
I understand what you mean, but this is not just language we’re talking about. After all language shapes perceptions.
The nomenclature surrounding autism is in great need of some improved clarity. To me, there appear to be three major groups among autists - 1) those who function, or appear to, in neurotypical society, at whatever resultant cost this may have in exhaustion and mental ill health, 2) those who cannot function effectively in neurotypical society due to severe anxiety, inability to vocalise etc., but who are of average or above average intelligence, and 3) those who cannot function effectively in neurotypical society due to the interplay of intellectual disability and autism. To pretend that these three groups, and I know it is an oversimplification, have the same abilities or support needs is simply futile.
I agree that using the term 'support needs' is better than saying 'functioning' but I think it would be good to keep in mind that there isnt a perfect name for everything. And sometimes people cant think of the right words, so they might say something that isnt the best term but it gets their point across. They may also only be familiar with certain terms. I think a nice suggestion of different terminology is fine but just to remember that they probably werent intending to be rude (I know ive said things in a way that I couldve done better). I also think any term could be considered rude or not just depending on the way its used.
I understand that as your individual experience and you are in control of what language you use to describe yourself, but I don’t think it is right to automatically assume that a group of autistic children are ‘low functioning’.
They have absolutely have no control or consent to how people describe their autistic experiences and we as the older autistic community should be supporting and advocating for our younger neurokin to be understood and perceived at least with neutral terms and neuro affirming language.
No human should be defined by functioning labels it is incredibly harmful.
Ausomely Autistic said:There is no such thing as ‘low functioning’, please do not use functioning labels when speaking about fellow members of our autistic community, especially our younger neurokin. It’s dehumanising and inaccurate.
I don't agree with this and also don't think it's OK to tell people what medical terms it's OK to use.
It's debatable and controversial.
I feel that functioning labels are fitting for me, because I have led an 'independent' life and therefore see myself as higher functioning than someone who is unable to be independent and, for example, can't speak or read or even dress themself.
This doesn't underestimate the amount of struggle and pain I've been through to get where I am now, but it does however indicate that I can function to a degree in the NT world.
The issue- aside from the fact that functioning labels aren't helpful- is that people believe if that if THEY can't see our struggles, those struggles don't exist.
A child who is able to attend a mainstream school by masking all day, who has excellent grades but no friends, will be under a great deal of stress. But because it's being suppressed all the time, nobody realises anything is wrong, and that child might not have the emotional maturity to describe what the problem is- and even if they do, their perception of the world is often dismissed as them making a fuss over nothing. I know this, because I WAS that child.
I don't know how we fix it. Better understanding of the many ways autism can present itself would help, particularly in schools.
There is no such thing as ‘low functioning’, please do not use functioning labels when speaking about fellow members of our autistic community, especially our younger neurokin. It’s dehumanising and inaccurate.
People harmfully and wrongly misconstrue some autistic people as ‘low functioning’ if they have co-occurring needs such as apraxia, learning disability or epilepsy etc. No human deserves to be defined and identified using functioning labels, our worth is not defined by how much we can contribute to society.
Please use the term ‘support needs’ instead and list what specific needs the autistic person you are talking about has.
Please read about the harm that ensues from using functioning labels to describe our autistic community:
https://www.autisticality.co.uk/functioning-labels