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.
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
Support needs would be inaccurate. I’m taking about intelligence, in practical terms low vs high IQ. If you prefer we can use low IQ autism instead of low functioning.
Hi, what should I use instead as i was just diagnosed as having high functioning autism- but the lady said i would've been diagnosed with Aspergers if it was some time ago. I understand that aspergers has highly negative associations, so I refuse to use it, but I haven't heard of this "low" and "high" functioning thing before. (And I find that it sounds quite rude and dehumanising :( ) Would I refer to having lower support needs, or is there a middle ground between high and low support needs as I need support, which I don't get, but I don't need constant support if that makes sense. Please don't feel pressured into answering, tia- Riz :)
Ausomely Autistic said: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.
I agree with this point. But I wanna add that I find functioning is only a helpful IF it is conceptually recognised as a fluid scale (how it is used medically at current as a fixed scale is when it is misguided, assumptive, and harmful) because there are better and worse days even if you don't have a debilitating co-occuring condition. Which is actually true for neurotypicals too just we seem to experience it magnified (the NT doctors are too keen to point out the ways we are deficient and errant from neurotypicals they never focus on our human similarities or strengths of difference).I do find it an interesting point though even if you remove the issue of functioning labels because as Peter says those %40+ approx are just thse who are diagnosed, it doesn't include those who mask or get missed from diagnosis for whatever reason, the invisible undetected autistic population is no doubt massive s the majority of autistic people would seem to be so-called "highter functioning", and yet we all have our struggles. I think my own parents expected me to just "tough it out" as a kid and teenager because I was "okay" academically, not disruptive in class, and bottled my anxiety and depression hidden from parents and teachers until I'd have explosive meltdowns and be labelled dramatic.I think it's time we dropped functioning levels and instead recognised the fluidity of how much support we need individually. Because when my mental health is good and my work load is manageable I do okay now, I haven't had a meltdown in 8 months, I just need someone to pick up a little slack in a few daily household tasks and to remind me about up-comming stuff. When I was depressed though I couldn't even dress myself let alone go to work and averaged about 3 meltdowns a week. I'm the same autistic person I've always been so saying I have one level of functioning is utter rubbish, I'd like to throw whoever invented static functioning lables and set ASD "levels" in the flipping bin.
Martin said: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.
Unfortunately Martin because they are seen as static I'd never trust a peice of paper or another person with my diagnosis, level, or functioning label to accurately explain my support needs. I'd honestly rather just try and mask long enough to get in the door places and then drop what I need on people in my own time as and when I need it. I don't trust any neurotypical to treat me how I need nor deserve as far as I can throw them, ignorance is their default setting: they are not in our shoes, not in our world and only ever "know" anything about it 2nd and 3rd hand.
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.
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.