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.
Ian said:When it comes to kids, I would say that "functioning" includes things like - Plays alone > Plays alongside > Plays team games but does not follow rules > Plays team games like peers Unable to decide what to eat for lunch > Can choose from two or three items by pointing > Has favourite food items > Can make a balanced choice at the canteen. Likes Thursdays because that's pizza day. Points or grabs > Use PECS to ask for an object > Uses single words or short phrases > Asks politely for what he wants, even if it is not visible. In education terms, we are talking roughly about a special school for kids with profound learning disabilities, a special school or unit following an entry-level curriculum (what used to be Moderate Learning Difficulties), or an autistic child with support in a mainstream classroom.
When it comes to kids, I would say that "functioning" includes things like -
Plays alone > Plays alongside > Plays team games but does not follow rules > Plays team games like peers
Unable to decide what to eat for lunch > Can choose from two or three items by pointing > Has favourite food items > Can make a balanced choice at the canteen. Likes Thursdays because that's pizza day.
Points or grabs > Use PECS to ask for an object > Uses single words or short phrases > Asks politely for what he wants, even if it is not visible.
In education terms, we are talking roughly about a special school for kids with profound learning disabilities, a special school or unit following an entry-level curriculum (what used to be Moderate Learning Difficulties), or an autistic child with support in a mainstream classroom.
I found the above + the rest of your concise post very helpful.
You've given situational context which I think is really important when discussing/debating 'functioning'.
Ian said:In terms of " functioning", autism is a disorder of social communication, not a deficit in intelligence. Although co-morbidities mean that people with severe communication difficulties often also have an intellectual impairment, the two clinical entities are different. You can have people with significant intellectual disabilities who have more developed social skills than some autistic individuals with low-average or even average IQs.
I think this is an important point to remember too.
I can tell you the reseach comunity is not going to abandon the term just because one NHS website tells them to.
Placing that aside I don't see how the term 'high functioning' has anything to do with the principal of including autitic people in polocy around autistic people.
The term is still used in some research but what I quoted above argues that "this term should be abandoned in research and clinical practice". It is considered disrespectful to the autistic community and goes against "nothing about us without us".
Autonomistic said:Have functioning labels ever existed though as an official diagnostic term?
High functioning has long been used in autism research and still is. Here's one example. In this context it just means normal or above average IQ. Some doctors use it in this way to when giving diagnosises so that when other doctors read the diagnosis 'high functioning autism' they know they are dealing with some one with mental capacity. There was a time where if the average doctor saw they had an apointment with a patient with an autism diagnosis they would have assumed they didn't have mental capacity. Taking 'high functioning' onto the diagnosis helped with that. If you have an autism diagnosis of any kind and a normal / above average IQ score you will be catagorised as 'high functioning' in any scientific study you enrole in (asuming the study cares about iq which they mostly do).
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.
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
Peter, I don't think IQ is the answer. In terms of " functioning", autism is a disorder of social communication, not a deficit in intelligence. Although co-morbidities mean that people with severe communication difficulties often also have an intellectual impairment, the two clinical entities are different. You can have people with significant intellectual disabilities who have more developed social skills than some autistic individuals with low-average or even average IQs.
Of course, there are grey areas and overlaps ... but if I get a call regarding a child, it helps my thinking to get a rough idea of their level of need. What I am talking about is not a fixed diagnostic category, but a general view regarding a child is at or above age-related expectations, slightly below, or significantly below.
I am going to do a family court report regarding an eleven-year-old boy, and in order to plan my approach, an IQ score is not helpful. Am I going to meet a bright but geeky Aspergers' tween, or a non-verbal child with the developmental age of a toddler? Will he have an age-appropriate understanding of my role, and what the court case is about, and be able to say what he wants? Will he be able to understand a simple explanation with social stories, maybe express himself by drawing pictures or answering closed questions? Will he have no idea what my visit is about, and I will need to use indirect methods to attempt to judge what his wishes and feelings are? That is what I would regard as "functioning" in this context.
In terms of intellectual ability / IQ that may be relevant when it comes to the methods I use - I use different versions of Barnardo's "worksheets" and some kids write sentences, some draw their answers to verbal questions, or just point to pictures. Some kids can complete standardized tests such as the Adolescent Wellbeing Questionnaire unaided, some can answer verbally, and some cannot manage it at all.
It used to be that secondary funding was linked to the percentage of passes at GCSE grades A - C. It made more financial sense to push a kid with a D grade up into the C range than to either help a gifted kid with SpLD from B to A* or to help a kid go from an E to a D.
And that has previously been discussed IQ scores for autistic people cluster into 2 groups unlike Neurotypical people where IQ clusters in the middle in one group
From the parents of 'high functioning' nd kids I know... The adults are ND too add think pushing through is the only answer if you are too be employed and successful. The problem is they are seen as high functioning, no-one actually sees the struggles at all. Which is why the labelling thing doesn't work.
there is a statistical mean when it comes to what is quantifyable. And often (but not always) values clustor around the mean. This is definatly true for IQ tests of neurotypicals. (not so true for autistic IQ tests where you get the double hump effect)
Well by definition you can only mesure what you can messure. You have to mesure IQ by difrences that can be messured. You can't messure inteligence (or anything else) using things that can't be messured.
How does IQ work? Is it normally weighted where the average appears at one value and then you look at how you differ from the average. What sort of distribution is it?
It's literally called a normal distribution or bell curve. https://en.wikipedia.org/wiki/Intelligence_quotient IQ is calibrated so that the average iq is 100 and the standard deviation is about 15 iq points. roughtly 2/3 of people have IQs between 85 and 115.
Also with the IQ test of autistic children versus ordinary children. That means it only includes the autistic children that get diagnosed, compared to the ones that don't. That might have a difference on the result.
That's fair. But since high iq is likely to make it easyer to mask it's likely those discrepencies, if they exist, are mostly present in the normal to high IQ inderviduals. Maybe there are some highly inteligent undiagnosed autistic people who test as having normal IQ because the test isn't well calibrated for them. But that doesn't really hurt my definition since I'm defining 'high iq autistic person' as someone with and IQ over 85. Which is 5/6th of the population for neurotypicals.
Peter said:ordinary children.
You mean non autistic children, there is no such thing as normal it is a societal construct.
We have lost sight of the forest for the trees. Could it be that parents of high intelligence autistics are more likely to be autistic so are less likely to ask for help? They have spent more time masking and have found ways to deal with their problems that they don't really want to confron their difference in themselves. They have grown up hearing the idea that they must try to fit in and so they might try to enforce that on their children rather then seeking out a different opinion. They are just tired of all this masking they have to do and they probably have more stuff on their plate.
I think you are right. IQ doesn't measure intelligence it measures a bunch of different factors that lead to high intelligence. Which can be useful. Bottom down thinking is extremely useful, it has created the devices we are using to communicate. It has created the modern world. But you also lose sight of the forest for the trees in the bottom up approach. The problem is it is never enough. You are always trying to break down problems into smaller and smaller parts. How much money is spent on modern physics trying to break down the universe into ever smaller components? You need a balance between the two. Bottom-up to fill in the details, but also top-down as a sanity check, to make sure you don't get lost and are on the right path.
Doesn't the fact you can't measure IQ by looking at noticeable differences feel a bit strange to you?
Also with the IQ test of autistic children versus ordinary children. That means it only includes the autistic children that get diagnosed, compared to the ones that don't. That might have a difference on the result. You might not be able to say autistic children have a different IQ then ordinary children, but only the diagnosed autistics. Does that make sense? Is that accounted for? There were a lot of strange words in the link and I found it very confusing. Shouldn't it be simpler. Can't they explain it in simple terms. I understand they are probably using it to communicate with other similar scientists who have knowledge of that but it seems so strange that research is inaccessible to anybody else.
I got a bit over the top in my previous message. Sorry.
I mean what kind of noticeable difference (based on IQ) would you like to measure? If it’s job success then that presupposes you assume that intelligent people always get good jobs which I think we both agree isn’t true?
anyway I do not think they are trying to measure autism via IQ tests in that paper. They are comparing the IQ tests of autistic children versus ordinary children.
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.
Well the first thing I will say is that an IQ of 125 is at least one standard deviation above mean making it quite high. IQ gets less accurate to the further you get away from 100 in either direction. Once you get beyond 2 standard deviations The number becomes pretty meaningless beyond simply being very high or very low. It’s difficult to calibrate and test the reliability of IQ tests at those sorts of high and low IQ levels because there are so few people to test them on. All they really tell you is that someone’s IQ is very high or very low.
secondly I am not from moment suggesting that people with low IQ not be allowed to take exams, and I’ve said previously that IQ can be plastic can improve with education. However if I was planning a package of special educational needs for a student and I knew they had a very low IQ it would influence the way I put that together differently than if they had a very high IQ.
you know I’ve yet to meet or hear about a brilliant programer with an IQ of 60, but I’m open to being surprised.
I’m regards to top down thinking. I think the most practical purposes people use a mix of top down and bottom up thinking, or at least they should. But it works better if the top down thinking is used as a shortcut to help Focus on the bottom up thinking on the most important elements.
as you can say models can be wrong and sometimes very wrong. That’s why they have to be validated against experimental data. One mathematician one said all models are wrong about some models are useful. Newtons theory of gravity was wrong but it will get you to the moon and back. Einstein special theory of relativity is is pretty much all you need for GPS satellites but it won’t explain the orbital precession of mercury. That doesn’t mean bottom-up thinking was the wrong way to think about gravity.
bottom-up models can be chaotic and that doesn’t nullify their usefulness either. Weather forecasting being the obvious example. Or over even longer timeframes climate models which can’t predict the weather on a particular day but will tell you about the climate in a year some time in the future.
The sad truth is economists are just very very bad at maths even when they’re pretending not to be. I once sat in a fourth-year Masters economics lecture on stock market analysis where a student raised his hand and asked what is a ‘sine wave.’ For historical reasons we economists tend to get ahead have often bbeen those who have a good verbal / people skills rather than those who are good at maths.
First of all I would say that an IQ test done at home isnt a proper IQ test. They’re meant to be administered by a professional in a controlled environment. So if someone just happened to have an IQ test lying around then I question if it wasn’t an official clinically approved one. And even if it was it can’t have been applied surely under clinically approved standards?
placing that aside. IQ tests are not meant to be a measure of whether people sound intelligent. Also I would say if you deliberately do an IQ test two different ways, which is what I think you’re implying your teacher did, then by definition one of those two ways can’t of been you doing your best.
and again clinically approved IQ tests are used across nations. while there has been some evidence that some nations scored better on these tests than others those discrepancies tend to disappear when you adjust for education which was what I was referring to when I said education can affect IQ.
so I have to ask have any of your IQ test been administered by a professional such as a psychiatrist or psychologist. Were any of them standardised IQ tests as opposed to ones you’re getting a booklet from the shop or off the Internet?
There are some indications that the genetics of autism work in 2 main ways. A polarisation of intellectual capacity between people whose autism differs because of these two types of genetic causes, would not be entirely unexpected.
Peter said:Here’s a more controversial point of view. maybe if you have rich parents that make you play with puzzles you actually grow up to have a higher IQ. There is some evidence to suggest that a lack of education in childhood can cause adults to have lower IQs than they otherwise would have.
When I was in my teenage years I used to go around doing odd jobs for whoever wanted me to do them, with gardening jobs being quite common, and sometimes I would get to hear life histories or get into lengthy discussions during or after the work set for me.
On one occasion, one of my employees asked me if I would like to join her at an intellectual get together, in that her friends found her reports of our discussions together to be rather interesting ~ which I was quite excited about as almost everyone either did not understand what I liked talk about, or just got seriously bored.
It turned out that these intellectual get togethers, were attended by people with IQ scores above 150 or 160 ~ or something like that, which was a major breath of fresh air for me because so much information was just freely flowing, and almost everyone was thoroughly enjoying it.
The person who was not enjoying it ~ was the person who preferred being or making himself the centre of attention, and as it turned had one of the highest IQs out of least that lot, but I somewhat ruined his previously established enjoyment of which by sharing the centre of attention with everybody who wanted to speak with me, or who I really wanted to listen to.
The person in question challenged me to do an IQ test competition with, and although I have always been an immutable equalitarian without any competitive spirit ~ I was really interested in doing an IQ test, what with hearing a lot about them and all that.
Anyway, we did the test, and everybody waited for the results ~ most with baited breaths to some extent. The highest IQ person scored above 160 (or thereabouts) and I scored 60 ~ I did not get to go back to the High IQ club, but the rest of the club were very impressed with how furious the high IQ person was about me being deemed a threat to their status.
According to one source:
Generally, a person with an IQ of 60 has different characteristics which include;
People with low IQ levels are categorized into various mental ages. Usually, for an IQ of 60, the mental is the same as that of a third grader. Hence such a person’s mental age is the same as a 6 or 7 years old child.
https://lmshero.com/60-iq/
People are generally quite surprised or even considerably shocked by my IQ scores, with my highest being 63, but things are as they and such is life.
One thing I found quite relevant is that different IQ tests for different nations of people can render a high score in one as a low scorer in another ~ which If I recall correctly involved in one case African and American people taking each other's tests as being an indicative example.
Also of my tutors as being a childhood genius completely failed and completely passed an IQ test by taking it twice but answering each one correctly in two different ways, with the point being that IQ tests are only really indicative of how programmable people are, rather than how experientially knowledgeable they are.
Being dyslexic and having dyscalculia has really not helped in some respects (particularly in Algebra and mathematics in general), but having to read words and sentences several times other whilst contextually cross referencing them with everything else I have seen, read and heard others speaking about ~ has meant that I read in the full sense of the term, rather than just stockpiling the words in my mind and nothing more.
In respect though of having Level 1 / high social functioning Autism, otherwise known as Asperger's Syndrome, my school reports always followed roughly the same theme, i.e., "If only [Deepthought] would apply himself to the same extent that he does in other subjects!!!"
It was thought that I was definite university material, and even got the offer of a scholarship at Oxford ~ providing of course I got the appropriate qualifications, which I did not because of walking out at the end of one of the required examinations with the exam paper all screwed in my hand. I was suffering from a major seizure hangover and could not meet my own exacting standards, and had no time, energy or wherewithal to redo it adequately.