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.
Ausomely Autistic said:There is no such thing as ‘low functioning’, please do not use functioning labels
Riz said:i was just diagnosed as having high functioning autism
This is a good example of why I think that this is problematic.
We are being told here that we shouldn't use the terminology of an official medical diagnosis.
More than that, we are being told that it doesn't exist.
I actually prefer to make my own mind up but this type of discourse concerns me a great deal and is unusual for this forum.
We are being told here that we shouldn't use the terminology of an official medical diagnosis. More than that, we are being told that it doesn't exist.
Have functioning labels ever existed though as an official diagnostic term?
My understanding is that they haven't. Aspergers used to be an official diagnosis and some people (including medical professionals) used the term 'high functioning' interchangeably.
However functioning labels have never been in the diagnostic manuals as far as I am aware. Currently they include level 1/2/3 support needs but not everyone is given one of these numbers at diagnosis. I know I wasn't.
https://psychiatry-uk.com/higher-or-lower-why-using-functional-labels-to-describe-autism-is-problematic/
I have done a little research to try and find the official NHS position on this. I have found this current document from NHS England which states:
"Do not use functioning level descriptors, such as, high-functioning, or low-functioning autism. These are not and never were diagnoses."
https://www.england.nhs.uk/long-read/a-national-framework-to-deliver-improved-outcomes-in-all-age-autism-assessment-pathways-guidance-for-integrated-care-boards/#respectful
My own personal view is that the use of functioning labels can prevent autistic people who may be deemed 'high functioning' from receiving the support that they need and their struggles are often unfairly dismissed.
Page 17 of this document sums it up well:
"We don’t use functioning terms as we believe they are unhelpful and can be misunderstood. As Beardon (2020:11) states: ‘to be told your child is ‘highfunctioning’ might insinuate that she doesn’t have any support issues at all; to be told your child is ‘low-functioning’ might be unjustified and unfair … the same person might function brilliantly in one environment and be completely ‘at sea’ in another’. Research by Alvares, Bebbington et al (2020) support this, finding ‘that 'high functioning autism' is an inaccurate clinical descriptor when based solely on intelligence quotient demarcations and this term should be abandoned in research and clinical practice’."
https://www.ndti.org.uk/assets/files/Its-not-rocket-science-V6.pdf
I understand what you mean, but formal identification of being autistic is based on the medical model, hence this language is pathologising.
As I have discussed with Riz, they dislike functioning labels and much prefer the term ‘support needs’ and then a specific descriptor of these needs.
This is why I think we need to start a movement where we do away with being assigned levels and functioning labels by the assessor but keep the terminology and just let us autistic people say what support we feel we need instead, so if someone feels their levels vary they can say to their employers/carers "I haven't slept very well in days so I'm level 2 this week, here are a few things I could use more accomodations/help with" if that is helpful to them for example.
I find that I have to do mental gymnastics and write in very indirect language in order to describe differences that are entirely obvious and could be described relatively concisely. Terms only become abusive if people use them in a derogatory way. If functional labels were used purely to describe levels of functionality in society, I do not think that many people would object. There is obviously a functional difference between the extremes of a person capable of working full-time in a demanding job and a person who requires dedicated care in order to exist on a day to day basis.