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.

Ian said:

I can call myself weirdly wired, geeky, neurodivergent, or anything I like ... but "autism" is a label that only comes with a clinical diagnosis.  I can be hyperactive, lively, and difficult ... but ADHD is a clinical diagnosis.

Yes I understand what you mean but no one needs to be defined by the pathology paradigm (medical model). Different types of people and therefore different types of brains have always existed, it is just know that we live in a capitalist society where minority groups are assumed to be disordered.

Ian said:

How can one expect special accommodations under equality legislation, if neurodivergence is just a social difference like having blue eyes and red hair rather than brown eyes and brown hair?

Neurodivergent is a neutral term, someone can identify as neurodivergent and disabled, but not everyone identifies this way.

Neurodivergent needs are human needs so we deserve to be supported with our access needs, just like anyone else. The term neurodivergent does not deny that someone has access needs, it just states that someone’s brain diverge from neuro normative culture. It just helps to describe how we have different needs and experiences.

Also, the reason why neurodivergence is categorised as a social difference is because it is a difference in the same way that there is diversity in gender and sexuality amongst other things in society. Also by understanding that neurodivergence is a social difference we can educate people about how how the neurodivergent community faces prejudice and marginalisation in the same way as other minority groups.

If you want to learn more about this please read the book ‘We’re All Neurodiverse’:

We're All Neurodiverse: How to Build a Neurodiversity-Affirming Future and Challenge Neuronormativity https://amzn.eu/d/3BLeEhD

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.

For some reason the term I used has been replaced by ***. Not by me, presumably by some sort of wokebot. Which makes my point. s-p-a-s-t-i-c is not a term of abuse. Look it up in the Oxford Clinical Dictionary.

Rightly or wrongly, neurodiversity is defined in medical/scientific terms according to diagnostic criteria. I can call myself weirdly wired, geeky, neurodivergent, or anything I like ... but "autism" is a label that only comes with a clinical diagnosis.  I can be hyperactive, lively, and difficult ... but ADHD is a clinical diagnosis.

It is possible to own a diagnosis without being owned by it. The trouble is when clinical terminology is misused, particularly in a pejorative way. People with cerebral palsy used to be described as ***, because spasticity " an abnormal increase in muscle tone or stiffness of muscle, which might interfere with movement, speech, or be associated with discomfort or pain" is a common feature of the condition. However, the clinical term was adopted in ordinary language as a pejorative term associated with mental retardation (another trigger term) and lost its original, clinical meaning. 

I try to be accurate, even pedantic, in my use of language. Context is relevant. I said, "Autism is a disorder of social communication, not a deficit in intelligence." A diagnosis of autism means that clinically speaking, the person's social communication and social imagination are qualitatively different from that of the majority of the population, to a degree that is deemed significant according to currently accepted diagnostic criteria.

For practical, everyday purposes I believe in a bio-social model, where neurodiversity is part of "life's rich tapestry " ...

But then I experience cognitive dissonance.  How can one expect special accommodations under equality legislation, if neurodivergence is just a social difference like having blue eyes and red hair rather than brown eyes and brown hair?

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.

Martin said:

comes first for the vast majority of adult-diagnosed autistics, it is just that many need that identity to be validated. If you consider that a big part of the life of an autistic is trying to understand what is going on in the society that surrounds them and being unsure that they are interpreting things correctly, seeking confirmation from society is understandable.

Yes I completely understand. 

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.

I think that self identifying comes first for the vast majority of adult-diagnosed autistics, it is just that many need that identity to be validated. If you consider that a big part of the life of an autistic is trying to understand what is going on in the society that surrounds them and being unsure that they are interpreting things correctly, seeking confirmation from society is understandable.

Thank you. It’s a shame that you don’t feel confident enough to self identify as autistic, I think everyone should have the opportunity to explore their identity and gain confidence in that.

However, I appreciate that having confidence in your identity can be quite difficult or seemingly impossible for some people.

Thank you.

Ausomely Autistic said:

I feel I have a responsibility to other autistics (particularly children and young people) to reframe the pathology paradigm to the neurodiversity paradigm so they can learn about their brain in a neuro affirming way.

I appreciate your explanation.

Ausomely Autistic said:

I self identify as autistic and I am 21 and I don’t intend to pursue formal identification as I think it would be a very pathologising and negative experience for me and also I know that I am autistic and I don’t need someone else to tell me.

I wouldn't have had the confidence to do that but it's good that you do.

It's much more harmful to my mental health to be told that I don't suffer from a 'disorder' (which I have described on a psychiatric assessment) when I have experienced a great deal of suffering during my long life, until diagnosis at 60.

I completely understand that different and difficult life experiences have shaped the way you view being autistic and I obviously can’t imagine the impact that suffering has had on your life but that doesn’t mean we should perceive and describe all of our autistic community as ‘disordered’.

 I self identify as autistic and I am 21 and I don’t intend to pursue formal identification as I think it would be a very pathologising and negative experience for me and also I know that I am autistic and I don’t need someone else to tell me.

I just don't understand where your happiness with autism comes from and your certainty that your attitude

We have very different life experiences and therefore very different perspectives about being autistic. The reason why I am so positive and proud of my autistic identity is because it makes me who I am ( and gives me a sense of belonging and purpose I never had before) and I can use that to advocate with and for our wider autistic community and teach my younger neurokin to learn about their autistic brain, other neurotypes and ultimately be proud of who they are!

I feel I have a responsibility to other autistics (particularly children and young people) to reframe the pathology paradigm to the neurodiversity paradigm so they can learn about their brain in a neuro affirming way.

 I don’t want anyone to think that their way of being in the world is wrong.

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 . 

Ausomely Autistic said:

I understand what you mean and it is ok if an individual wants to describe themselves like that as it is their choice but these words should not be used for our entire community as not only are they factually incorrect (there is neurodiversity in humanity in the same way that biodiversity exists) but also incredibly harmful to the mental health of our neurokin.

It's much more harmful to my mental health to be told that I don't suffer from a 'disorder' (which I have described as 'disorder' on a psychiatric assessment) when I have experienced a great deal of suffering during my long life, until diagnosis at 60.

What age were you diagnosed?

This is probably pertinent because perhaps if you are a younger person you can spend your life avoiding all the triggers and traps there are out there in the world?

I just don't understand where your happiness with autism comes from and your certainty that your attitude and the terms you use are the right ones and the only ones to be used here on this public forum.

Ausomely Autistic said:

We autistic people are not disordered

Yes it is ok for an individual to describe themselves using that term but not a whole community as it is damaging and harmful.

Yes sorry I made a mistake. I didn’t mean to imply that you had stated that.

I'd also suggest allowing people to use their own terms rather than policing here.

I understand what you mean and it is ok if an individual wants to describe themselves like that as it is their choice but these words should not be used for our entire community as not only are they factually incorrect (there is neurodiversity in humanity in the same way that biodiversity exists) but also incredibly harmful to the mental health of our neurokin.

Ausomely Autistic said:

We autistic people are not disordered, we are neurologically different!

Speak for yourself!

It's not 'we' as you put it.

You should take your own advice:

Ausomely Autistic said:

f you want to use that term to describe yourself that is fine, but please don’t generalise our entire autistic community

I was diagnosed with ASD.

It's my choice whether I adopt/accept that term (and use it on this forum).

Ausomely Autistic said:

Please do not describe our whole community as disordered, when that is factually incorrect and instead we are neurodivergent. If you want to use that term to describe yourself that is fine, but please don’t generalise our entire autistic community with this harmful language and perspective.

You are quoting Ian.

Please correct this.

I'd also suggest allowing people to use their own terms rather than policing here.

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.

We autistic people are not disordered, we are neurologically different! Hence, our differences in communication. Autism is a neurotype, hence we autistic people experience the world fundamentally different ways to non autistic people. 

Please do not describe our whole community as disordered, when that is factually incorrect and instead we are neurodivergent. If you want to use that term to describe yourself that is fine, but please don’t generalise our entire autistic community with this harmful language and perspective.