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.

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.

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.

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

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?

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. 

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.

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.

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.

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

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?

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. 

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.

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.