Parental Bias and Autism

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.

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.

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.

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.

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 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.