Parental Bias and Autism

This discussion has drifted again from the point. My point is how do we get parents of inteligent autistic kids, who are doing ok at school (or are homeschooled), but are pehaphs very socially isolated, to seek help for their children?

because my impression is most parents don’t even see the point in getting a diagnosis for their autistic  kid unless he’s struggling academically.

Respectfully I would suggest IQ is probably far closer to the indicators in the mental capacity act than ‘levels’ are in the DSM. An autistic person who has a high IQ but is completely socially dysfunctional could be level three in the DSM-5, have zero age appropriate social skills and yet still have every capacity to understand and retain information and use it in a rational decision-making process. You may disagree with me but plenty of research indicates that IQ is a reasonable proxy for cognitive ability including the ability to understand retain and reason about information (which is what the mental capacity act requires)

if you don’t like IQ then replace with the term general intelligence or cognitive ability. Just know that in this thread we are here to discuss the parents of children with average / high cognitive ability regardless of what level of social functioning they may or may not have.

to be honest I think the whole notion of functioning is flawed. it begs the question functional for what purpose, by what standard? How is good function measured? In success in school work, I would argue not? too subjective. not immediately sticking out as being hugely peculiar the first time you meet them? Again I would argue not. too superficial. No 2 individuals Will have the same opinion about what a successful life looks like and therefore the same opinion about what a functional person is.

trying to measure functionality (in the DSM-5 levels sense) is just a waste of time. More objective metrics are required. Something you can objectively measure like an IQ test. When there is a psychometric instrument to measure autistic ‘functionality’ we can talk about that again.

all the DSM-V level represents is one doctors subjective opinion having seen a tiny snapshot of a persons life. A different doctor on a different day might come to a completely different conclusion.

According to DSM-5:

"

Diagnostic Criteria for 299.00 Autism Spectrum Disorder

To meet diagnostic criteria for ASD according to DSM-5, a child must have persistent deficits in each of three areas of social communication and interaction (see A.1. through A.3. below) plus at least two of four types of restricted, repetitive behaviors (see B.1. through B.4. below).

1. Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following, currently or by history (examples are illustrative, not exhaustive; see text):
   1. Deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions.
   2. Deficits in nonverbal communicative behaviors used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures; to a total lack of facial expressions and nonverbal communication.
   3. Deficits in developing, maintaining, and understanding relationships, ranging, for example, from difficulties adjusting behavior to suit various social contexts; to difficulties in sharing imaginative play or in making friends; to absence of interest in peers.

Specify current severity:

Severity is based on social communication impairments and restricted, repetitive patterns of behavior. For either criterion, severity is described in 3 levels: Level 3 – requires very substantial support, Level 2 – Requires substantial support, and Level 1 – requires support.^.1 "

There is NOTHING in the definition of autism that relates to cognitive ability as such ... and IQ is at best a crude measure of cognitive ability ... that is why a professional "intelligence test" by a chartered psychologist comes with a detailed analysis of the results, including sub-test scores such as verbal vs non-verbal.

The "functional test" in the Mental Capacity Act 2005 is:  " The ability to understand information about the decision (the 'relevant' information); The ability to retain the information long enough to make the decision; The ability to use, or 'weigh up' the information as part of the decision-making process; and The ability to communicate their decision through any means."

We are looking at age-appropriate social skills. This includes awareness of danger, self-care, ability to cope with activities of daily living. For practical purposes, it is more important to know whether a person can use public transport, handle money, interact appropriately with strangers etc. than whether they can solve a number series or a picture puzzle.  "Level of need" is another way of describing functioning ... a person who is "high functioning" will on average have fewer support needs than somebody who struggles with the functions of daily living.

respectfully I choose IQ precicly to avoid having a debate about difrent ways functioning can be defined.

Ian said:

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?

I would sugest if the child has an IQ over 85 it's very likely the child has the ability to understand all these things if properly explained and express themselves if propoly put at ease and given the oppotunity. Remember the focus here is on children of normal inteligence with autism not the distiction between difrent levels and types of interlectual disability.

This is not really about IQ this is about aspect's of a person's autism that mean they can cope with school , if they can't do that, then they get diagnosed, if they can often they will be missed . 

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.

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.

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.

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 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.

By definition, 50% of any sample would be below average, given that on a standard distribution the mean, median, and modal "averages" are 50%.  In terms of diagnosis, my unscientific guess is that individuals who are at the lower end of the spectrum will have the highest support needs, comorbid learning disabilities, extreme communication difficulties etc., and would come to the attention of services.  Those at the higher end of the distribution are more likely to be employed or in education, and to be experiencing other issues such as specific learning difficulties  (60% comorbidity) and stress.  My guess is that someone with an "average" IQ (say 1 standard deviation, 85-115) could be masking and getting by, possibly employed below their capacity, and may not seek a diagnosis. In the same way, some dyslexics survive school but struggle with the increasing demands of higher education, and get diagnosed at university.

I understand and respect what you mean, but I don’t agree with this:

Peter said:

It is precisely because IQ tests are limiting that they are useful.

It is precisely because IQ tests are limiting that they are useful. They are specifically designed to exclude all kinds of factors. factors like social norms and memorised topical knowledge. They are meant to be a measurement of the ability to learn and reason and solve technical problems. It’s precisely because they exclude social elements that actually very useful for autistic people. Because it can give an impression of what a person can achieve if society isn’t in their way.

No I don’t want to cite any research, all I want to say is that intelligence can be measured in many different ways and the IQ test is limiting. I mean this because it does not suit the way many people’s brains work and also once you measure someone’s intelligence immediate unhelpful assumptions are made about them.

You can’t value someone’s intelligence by looking at them. Also life skills are much more important and useful for lots of people.

Iq tests may be less accurate than for neuro typical people but that doesn’t mean that it is meaningless. Unless maybe you can cite some source stating that the measurement  is meaningless?

Intelligence can be measured in many different ways, the Intelligence Quotient is not accurate or representative of all humans, particularly those who are multiply neurodivergent.

You are so welcome!

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.

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.

Thank you so much once again, I really appreciate it :D 

Right so Aucademy is a great starting point:

https://aucademy.co.uk/

Aucademy is an excellent autistic led education platform about autistic experiences:

https://aucademy.co.uk/starting-your-autistic-discovery-journey-a-guide/

Aucademy YouTube channel:

https://youtube.com/@aucademy6195?si=J-bxzMYDuz3x9Ofe

Neuroclastic - collection of blog and resources by autistics:

https://neuroclastic.com/

Autisticality - great, easy to understand infographics about autistic experience:

https://www.autisticality.co.uk/

There are loads more blogs, social media accounts and books by autistic people but this is a starting point.

Good luck on your autistic discovery journey!