"She also struggles with reciprocal conversation: the ordinary back-and-forth of everyday speech. Asked a question, she is liable either to answer in a word and leave silence hanging, or to launch into a monologue and still fail to return the conversational ball. Yet she can be delightful company especially in groups because she has developed a kind of humorous commentary style. She follows the conversation, interjects witty observations and can be very entertaining. This means people can spend hours with her without realising she has not actually been engaging in conversation in the usual sense at all. The difficulty becomes apparent only when she is expected to perform the social game directly."
Haha, wow, this really resonates with me. I struggle with that kind of conversation too, it feels artificial and obviously performative in a way that's profoundly awkward to me, and so I've developed exactly the same conversational style as your daughter; the occasional witty observation in place of personal connection.
Agreeing with other comments: this is a very good, timely piece.
My nephew lived with significant autism. He was in good circumstances, but it took its toll. What we need -- oh, so often in our lives -- is clear and careful thinking, and this article is an example.
Thank you for writing this article and sharing the story of your daughter. She sounds lovely. This has been helpful to me in understanding autism what is important.
My training as a child psychiatrist was with one of those who wrote the book on Asperger’s. My own intense ideological bent then and her differently intense academic ways and teaching combined to keep me ignorant until much later than any child psychiatrist should have been! But that means that I too have some regrettable experience and authority to say how wonderful and educational your clear thinking and account is, Helen.
I eventually learned how ignorant I also was to rely on my own love of metaphor when talking with those “on the spectrum”. So with that caveat, I want to say that reading this or any of your essays, Helen, reliably creates a bright sunny clearing in the usual misty grey days the rest of us may be wandering around in! Or (another metaphor): it’s like you have an autistic savant ability to see human complexities and instantly describe in words like those who can see and exactly draw complex architecture! Thank you.
Great points here, I agree with everything you've said. I've also seen psychologists argue that the more expansive notion of autism is "more accurate". In other words, psychologists have gotten better at recognizing autism, and therefore more kinds of people are being diagnosed.
But this argument hasn't made sense to me, because autism is just defined by its symptoms, not a set of physical markers. And the main reason that people are so interested in studying autism is because of how debilitating and life-changing it is. So if people with mere social anxiety or anti-social traits are being diagnosed with autism, then it defeats the purpose of specializing in studying autism.
I think you could even accept that some traits probably are a mild variation of autistic ones but simply say that it does not meet a standard for clinical diagnosis. If the person is still troubled by them, they might find techniques that help autistic people useful but cannot be said to have a disorder.
"We can choose whether to make life easier or harder for people whose brains are a bit (or a lot) different by the way we speak to and about them."
I reckon that this questionable act of reducing behavior to neurological issues, even in absense of proof, does NOT help anyone.
In addition, the autism spectrum is plagued by the avalanche of co-morbidities that people diagnosed with autism suffer from. Much of autism is emanating from a cluster of pathologies which also, for example, give rise to intellectual disabilities and seizures. Given that pattern, it should be clear that profound autism and Asperger's do not constitute the same disorder.
"Autism is a distinct lifelong, neurological disorder which presents consistent and enduring problems for those affected."
I doubt about the distinct part, since differential diagnostics between autism and intellectual disability, e.g. does not exist which means there is, again, a relatively large cluster of issues that will cause both. Whether or not any instance of autism is neurological in nature is debatable. Although this is repeated over and over again, so far, 'experts' can't even properly explain the most extreme cases which should be the easiest. Autism isn't life-long for everyone as well since people recovering from it have been noted although neurodiversity advocates are fighting this notion extremely hard which seems weird.
The notion of masking is utterly pseudo-scientific and I reckon, it's nothing but industrial propaganda meant to convince people (mostly females) that they should get tested for autism. Yes, some people diagnosed with severe communication issues will try to appear more normal in public settings similarly to how people with a broken leg will use the other leg to compensate. It changes nothing about the underlying pathology which can be clearly measured in an appropriate setting.
In regards to your daughter, I see that you're framing a lot of things as 'autism' which technically aren't autism including prosopagnosia and anaesthesia which shows again that comorbidities are mistaken as integral parts of autism. Whether or not here strictly 'autistic' features are the source of her disability remains open.
"Autism is a real neurodevelopmental condition with many different manifestations."
Again, per what I've written so far, there is no good reason to think of autism as a real or coherent condition.
Neurodevelopmental diagnositic labels were 'developed' before there was an understanding that neurocognitive trait profiles are not discrete. They were also developed before clinicians appreciated the associations between neurodevelopmental conditions and associated physical conditions. I propose that a better diagnostic framework would be to a) establish the presence of neurodevelopmental difference (ie persistent since somebody was born and pervasive across settings, with a 'spiky profile' of strengths and chellenges that are atypical compared to age-matched peers; and b) characterisation of a person's neurocognitive traits - be they differences in literacy, numeracy, proprioception, organisation, attention, movement needs, impulsivity, communication differences, sensory sensitivities and deep interests etc. I do also think that the diagnostic framework should acknowledge that neurodevelopmental conditions seem to be part of a wider somatic collection of differences associated with tissue hypermobility, dysautonomia and mast cell activiation (although evidence in this area, whilst convincing, is still evolving).
Well, yes. There are diagnostic criteria to do with difficulties with language, social communication, sensory sensitivity, executive function, emotion recognition etc. It doesn't actually matter much what I think, though. I'm a care assistant and write books on postmodernism. Neurodevelopment psychologists are who you want here.
This is great. I have to look for the angles of my partner’s jaw and remember that my daughter is weeny has my partner’s tiny nose and my coloured hair.
I’ll recommend this article to my colleagues working in the ND field.
So much to say about ND and identity politics. I’ve done my own 180 turnaround in recent years!
This is a massive concern, a large percentage of education and local authority budgets is disappearing into a black hole of elastic autism and ADHD diagnosis, with this hopeless government doing nothing about it for fear of not looking progressive.
On the positive side, there is a growing market for educational products and productivity apps for the neurodivergent.
"She also struggles with reciprocal conversation: the ordinary back-and-forth of everyday speech. Asked a question, she is liable either to answer in a word and leave silence hanging, or to launch into a monologue and still fail to return the conversational ball. Yet she can be delightful company especially in groups because she has developed a kind of humorous commentary style. She follows the conversation, interjects witty observations and can be very entertaining. This means people can spend hours with her without realising she has not actually been engaging in conversation in the usual sense at all. The difficulty becomes apparent only when she is expected to perform the social game directly."
Haha, wow, this really resonates with me. I struggle with that kind of conversation too, it feels artificial and obviously performative in a way that's profoundly awkward to me, and so I've developed exactly the same conversational style as your daughter; the occasional witty observation in place of personal connection.
Agreeing with other comments: this is a very good, timely piece.
My nephew lived with significant autism. He was in good circumstances, but it took its toll. What we need -- oh, so often in our lives -- is clear and careful thinking, and this article is an example.
This is a good article. I too am from a family where many people have subclinical autistic traits and “invisible” difficulties.
Thank you for writing this article and sharing the story of your daughter. She sounds lovely. This has been helpful to me in understanding autism what is important.
I love the way you think and write
An excellent piece
wow, my heart goes out to you and your daughter!
the transition to adulthood is hard enough already without constantly being told “you’re not good enough, you fail” because of a lifelong disability
im really rooting for you two!
Oh, I'm in group 3. I appreciate this breakdown, it helps me make sense of the spectrum and it cuts through the bs
Wonderful article, as always — and well-chosen photo to illustrate it!
Oh, my caption disappeared. Have replaced it now. Tis my offspring.
That I guessed!
If I could illustrate them all with my child, cat or dog, that would be ideal!
Ngl I don't think you can't. People love critter pics
My training as a child psychiatrist was with one of those who wrote the book on Asperger’s. My own intense ideological bent then and her differently intense academic ways and teaching combined to keep me ignorant until much later than any child psychiatrist should have been! But that means that I too have some regrettable experience and authority to say how wonderful and educational your clear thinking and account is, Helen.
I eventually learned how ignorant I also was to rely on my own love of metaphor when talking with those “on the spectrum”. So with that caveat, I want to say that reading this or any of your essays, Helen, reliably creates a bright sunny clearing in the usual misty grey days the rest of us may be wandering around in! Or (another metaphor): it’s like you have an autistic savant ability to see human complexities and instantly describe in words like those who can see and exactly draw complex architecture! Thank you.
Great points here, I agree with everything you've said. I've also seen psychologists argue that the more expansive notion of autism is "more accurate". In other words, psychologists have gotten better at recognizing autism, and therefore more kinds of people are being diagnosed.
But this argument hasn't made sense to me, because autism is just defined by its symptoms, not a set of physical markers. And the main reason that people are so interested in studying autism is because of how debilitating and life-changing it is. So if people with mere social anxiety or anti-social traits are being diagnosed with autism, then it defeats the purpose of specializing in studying autism.
I think you could even accept that some traits probably are a mild variation of autistic ones but simply say that it does not meet a standard for clinical diagnosis. If the person is still troubled by them, they might find techniques that help autistic people useful but cannot be said to have a disorder.
"We can choose whether to make life easier or harder for people whose brains are a bit (or a lot) different by the way we speak to and about them."
I reckon that this questionable act of reducing behavior to neurological issues, even in absense of proof, does NOT help anyone.
In addition, the autism spectrum is plagued by the avalanche of co-morbidities that people diagnosed with autism suffer from. Much of autism is emanating from a cluster of pathologies which also, for example, give rise to intellectual disabilities and seizures. Given that pattern, it should be clear that profound autism and Asperger's do not constitute the same disorder.
"Autism is a distinct lifelong, neurological disorder which presents consistent and enduring problems for those affected."
I doubt about the distinct part, since differential diagnostics between autism and intellectual disability, e.g. does not exist which means there is, again, a relatively large cluster of issues that will cause both. Whether or not any instance of autism is neurological in nature is debatable. Although this is repeated over and over again, so far, 'experts' can't even properly explain the most extreme cases which should be the easiest. Autism isn't life-long for everyone as well since people recovering from it have been noted although neurodiversity advocates are fighting this notion extremely hard which seems weird.
The notion of masking is utterly pseudo-scientific and I reckon, it's nothing but industrial propaganda meant to convince people (mostly females) that they should get tested for autism. Yes, some people diagnosed with severe communication issues will try to appear more normal in public settings similarly to how people with a broken leg will use the other leg to compensate. It changes nothing about the underlying pathology which can be clearly measured in an appropriate setting.
In regards to your daughter, I see that you're framing a lot of things as 'autism' which technically aren't autism including prosopagnosia and anaesthesia which shows again that comorbidities are mistaken as integral parts of autism. Whether or not here strictly 'autistic' features are the source of her disability remains open.
"Autism is a real neurodevelopmental condition with many different manifestations."
Again, per what I've written so far, there is no good reason to think of autism as a real or coherent condition.
Neurodevelopmental diagnositic labels were 'developed' before there was an understanding that neurocognitive trait profiles are not discrete. They were also developed before clinicians appreciated the associations between neurodevelopmental conditions and associated physical conditions. I propose that a better diagnostic framework would be to a) establish the presence of neurodevelopmental difference (ie persistent since somebody was born and pervasive across settings, with a 'spiky profile' of strengths and chellenges that are atypical compared to age-matched peers; and b) characterisation of a person's neurocognitive traits - be they differences in literacy, numeracy, proprioception, organisation, attention, movement needs, impulsivity, communication differences, sensory sensitivities and deep interests etc. I do also think that the diagnostic framework should acknowledge that neurodevelopmental conditions seem to be part of a wider somatic collection of differences associated with tissue hypermobility, dysautonomia and mast cell activiation (although evidence in this area, whilst convincing, is still evolving).
Great read, thank you.
I would be curious to know if you think there's a "core" of autism, and if so what is it?
I don’t know what that means.
Is there something in common with all autistics?
Well, yes. There are diagnostic criteria to do with difficulties with language, social communication, sensory sensitivity, executive function, emotion recognition etc. It doesn't actually matter much what I think, though. I'm a care assistant and write books on postmodernism. Neurodevelopment psychologists are who you want here.
This is great. I have to look for the angles of my partner’s jaw and remember that my daughter is weeny has my partner’s tiny nose and my coloured hair.
I’ll recommend this article to my colleagues working in the ND field.
So much to say about ND and identity politics. I’ve done my own 180 turnaround in recent years!
This is a massive concern, a large percentage of education and local authority budgets is disappearing into a black hole of elastic autism and ADHD diagnosis, with this hopeless government doing nothing about it for fear of not looking progressive.
On the positive side, there is a growing market for educational products and productivity apps for the neurodivergent.
Read this blog series which came out a couple of years ago and makes very similar points. It has gained quite a wide readership - pro and against.
https://www.madintheuk.com/2024/12/part-1-neurodiversity-what-exactly-does-it-mean/