This tension also comes up when people object to the label "high-functioning", and go "you have no idea how much I really struggle ..." and move on to detail their struggles. Or "you have no idea how badly and suddenly I deteriorate if my needs aren't accommodated and I'm in an unfavourable environment".
I don't have an autism diagnosis (I purposefully phrase it this way because for all I know, I might fit the criteria, might or might not). But I can recognize the impulse to insist that you struggle.
I meet people all the time who assume that once upon a time, I suffered from psychosis, but now, I have long since recovered and become normal. This is just factually wrong (as you know!). I must really take care of myself to avoid another breakdown, I have a whole host of mental tricks and coping mechanisms continuously employed or else I wouldn't function, and despite all this, I sometimes get worse, like last Christmas-new year (which I wrote about on my blog). Last Christmas-new year was not a relapse into full-blown psychosis but it WAS a close call.
So, I wanna explain this to people who erroneously assume that I'm sane and normal now, both because I don't want them to have factually incorrect beliefs about me, but also because the belief that there's a sharp line between psychotic and normal and you're on one side or the other is damaging to madpeople in general.
HOWEVER.
That doesn't mean that it's factually incorrect to say that I'm high-functioning. My function IS pretty damn high most of the time! And it would be wrong to point at some seriously struggling people on the schizo spectrum, I can think of some people I've come across in support groups, and go "we're actually THE SAME it's just that it doesn't SHOW as much on me".
The high-functioning label can absolutely be used in problematic ways. Masking, hard-struggling people close to their breaking point might be dismissed and denied support because they seem so high-functioning anyway. But that doesn't mean there are no real differences.
As per ICD-11 criteria autism/autism spectrum disorder is a neurodevelopmental condition, i.e. it has onset before the age of 18, with two essential features: persistent deficits in initiating and sustaining reciprocal social communication and interaction and restricted, repetitive, and inflexible patterns of behaviour, interests, or activities that are atypical or excessive. Autism can affect different areas e.g. executive functioning, sensory processing, information processing emotional regulation, motor skills, language, social skills etc. with different levels of severity so there is incredible variation in the way autistic people present but this doesn’t change the fact that on the basis of the available evidence at present autism is a single condition. So, I agree that “profound autism” should be just an administrative distinction not a separate condition. Furthermore, “zero level” autism is a very good term for people with subclinical autism or why not simply use “subclinical autism” or use the “Broader Autism Phenotype” (BAP) term?
Lastly, it’s important to note that autism/autism spectrum disorder is associated with increased morbidity (both mental and physical) and mortality and reduced life expectancy even in people who do not have significant support needs, for example there is increased risk of suicide, so clearly autism is a real medical condition not just a “difference” and “neurodiversity/neurodivergence” is neither a medical nor a scientific term.
That last part is jumping to conclusions. It could be that the increased suicide risk is 100% due to stigma and discrimination, for instance. Note: I'm not saying that this IS the case. Just that it COULD be the case; moving from "increased suicide risk" to "this is therefore a medical problem, not just a difference" is erroneous.
It's also possible to say - like Robert Chapman once did in a conference presentation, IIRC - that autism itself is a type of neurodivergence, difference from the norm. This difference increases the risk that you will end up with various illnesses, including mental illnesses, but it is not itself an illness.
Whether you agree or disagree with Chapman's take, it's not conceptually confused; you would have to actually argue against it.
Did you mean this to be a counter argument to anything I wrote ...? If so, you gotta explain how that is supposed to work. Most proponents of a neurodivergence paradigm, of an "it's at bottom a neutral difference in the brain" paradigm, seem to assume that there are neurological differences.
There is a construct that’s defined in research on autism called The Broader Autism Phenotype and its meant to capture people with subclinical autistic traits. It’s most often seen in family members with diagnosed ASD. While it’s not a clinical diagnosis, it comes with an increased odds of other mental health diagnoses (anxiety, depression, OCD) as well an increased odds of having children who are autistic.
You're overthinking it. Himsworth was a refiner, not an expander.
I ruined a perfectly good shirt when I read a passage in Donald Klein's Understanding Depression where he likened MDD to diabetes and antidepressants to insulin. After recovering, I had to double-check the front cover to make sure it was "Donald" and not "Nathan," and then check the back to make sure it wasn't ghostwritten by Charles Nemeroff. I can only assume it was intended as a noble lie.
The history of how diabetes was discovered is a fascinating story and one that could hardly be more different to the modern story of autism. It didn't involve rating scales, operationalised criteria, patient advocacy groups, philosophers, epidemiology, statistics, GWAS, Twitter, Reddit, RCTs, meta-analysis, or any of the things that make autism look like a giant ethereal blob. The separation of type 1 and type 2 also proceeded in the same way as previous discoveries. Himsworth's discovery was induction based on careful empirical observations.
You get a lot of things right in this article, but I think you’re missing the main point. The reason so many ordinary people have trouble believing the current category is because it violates their pattern recognition. Much in the same way our ancestors recognised a tiger or a duck, most people intuitively sense that something "just isn't right" about the overexpansion of autism. I think we need to stop gaslighting Blind Freddy. I can’t understand the scientific impulse to expand rather than refine; it baffles me.
To be clear I have no problem with hard and soft autism. Family studies support the notion and as I say, you get a lot of things right. I just don't think we're talking about that kind of gradation anymore.
I appreciate the comment about the blurring of lines in the public ('What has happened over the past two decades...'), I noticed this trend ramping up as a resident when patients started consulting 'doctor google', now its ChatGPT/AI. In the former context I would send them to reputable websites to understand distinctions, in the latter I discuss clear prompting and requests for citations that we review together and a discussion of animal studies vs human studies. This is a learning curve for us all!
Diagnostic cloudiness occurs in other areas in psychiatry- not just amongst patients but also clinicians.... That is a separate and sizable topic. In my own work a bipolar diagnosis can -at times- be a catch all for 'we are not sure whats going on with this mood disregulation thing.' In the context of substance use disorders (I'm an addiction psychiatrist amongst other things) it means clear diagnostics to distinguish the effects of substances on mood and patiently ruling out a personality disorder vs trauma (ptsd) - the latter being a great imitator. Even without substance use in the picture, clarification does make a difference in course of care, maintenance and recovery. It is an interesting process when a diagnosis is changed (to, lets say, one of the latter two) - how a person receives it, how it shifts their involvement in their self-care.
Finally, I read into the context of this NYT article a political layer, because one (controversial) public figure describes himself as having this diagnosis (whether its true or not), it stirs a desire for distinction (not just clinical, my sense it may be influenced by party lines).
This tension also comes up when people object to the label "high-functioning", and go "you have no idea how much I really struggle ..." and move on to detail their struggles. Or "you have no idea how badly and suddenly I deteriorate if my needs aren't accommodated and I'm in an unfavourable environment".
I don't have an autism diagnosis (I purposefully phrase it this way because for all I know, I might fit the criteria, might or might not). But I can recognize the impulse to insist that you struggle.
I meet people all the time who assume that once upon a time, I suffered from psychosis, but now, I have long since recovered and become normal. This is just factually wrong (as you know!). I must really take care of myself to avoid another breakdown, I have a whole host of mental tricks and coping mechanisms continuously employed or else I wouldn't function, and despite all this, I sometimes get worse, like last Christmas-new year (which I wrote about on my blog). Last Christmas-new year was not a relapse into full-blown psychosis but it WAS a close call.
So, I wanna explain this to people who erroneously assume that I'm sane and normal now, both because I don't want them to have factually incorrect beliefs about me, but also because the belief that there's a sharp line between psychotic and normal and you're on one side or the other is damaging to madpeople in general.
HOWEVER.
That doesn't mean that it's factually incorrect to say that I'm high-functioning. My function IS pretty damn high most of the time! And it would be wrong to point at some seriously struggling people on the schizo spectrum, I can think of some people I've come across in support groups, and go "we're actually THE SAME it's just that it doesn't SHOW as much on me".
The high-functioning label can absolutely be used in problematic ways. Masking, hard-struggling people close to their breaking point might be dismissed and denied support because they seem so high-functioning anyway. But that doesn't mean there are no real differences.
Great points! Thank you
Excellent article Awais, thank you.
As per ICD-11 criteria autism/autism spectrum disorder is a neurodevelopmental condition, i.e. it has onset before the age of 18, with two essential features: persistent deficits in initiating and sustaining reciprocal social communication and interaction and restricted, repetitive, and inflexible patterns of behaviour, interests, or activities that are atypical or excessive. Autism can affect different areas e.g. executive functioning, sensory processing, information processing emotional regulation, motor skills, language, social skills etc. with different levels of severity so there is incredible variation in the way autistic people present but this doesn’t change the fact that on the basis of the available evidence at present autism is a single condition. So, I agree that “profound autism” should be just an administrative distinction not a separate condition. Furthermore, “zero level” autism is a very good term for people with subclinical autism or why not simply use “subclinical autism” or use the “Broader Autism Phenotype” (BAP) term?
Lastly, it’s important to note that autism/autism spectrum disorder is associated with increased morbidity (both mental and physical) and mortality and reduced life expectancy even in people who do not have significant support needs, for example there is increased risk of suicide, so clearly autism is a real medical condition not just a “difference” and “neurodiversity/neurodivergence” is neither a medical nor a scientific term.
That last part is jumping to conclusions. It could be that the increased suicide risk is 100% due to stigma and discrimination, for instance. Note: I'm not saying that this IS the case. Just that it COULD be the case; moving from "increased suicide risk" to "this is therefore a medical problem, not just a difference" is erroneous.
It's also possible to say - like Robert Chapman once did in a conference presentation, IIRC - that autism itself is a type of neurodivergence, difference from the norm. This difference increases the risk that you will end up with various illnesses, including mental illnesses, but it is not itself an illness.
Whether you agree or disagree with Chapman's take, it's not conceptually confused; you would have to actually argue against it.
Post-mortem studies of autistic brains have identified specific brain structure abnormalities:
https://pubmed.ncbi.nlm.nih.gov/34273379/
Did you mean this to be a counter argument to anything I wrote ...? If so, you gotta explain how that is supposed to work. Most proponents of a neurodivergence paradigm, of an "it's at bottom a neutral difference in the brain" paradigm, seem to assume that there are neurological differences.
A diagnosis of ASD is also associated with increased risk for two or more chronic health problems.
https://www.cam.ac.uk/research/news/autistic-individuals-have-increased-risk-of-chronic-physical-health-conditions-across-the-whole-body
There is a construct that’s defined in research on autism called The Broader Autism Phenotype and its meant to capture people with subclinical autistic traits. It’s most often seen in family members with diagnosed ASD. While it’s not a clinical diagnosis, it comes with an increased odds of other mental health diagnoses (anxiety, depression, OCD) as well an increased odds of having children who are autistic.
https://pmc.ncbi.nlm.nih.gov/articles/PMC3420416/
You're overthinking it. Himsworth was a refiner, not an expander.
I ruined a perfectly good shirt when I read a passage in Donald Klein's Understanding Depression where he likened MDD to diabetes and antidepressants to insulin. After recovering, I had to double-check the front cover to make sure it was "Donald" and not "Nathan," and then check the back to make sure it wasn't ghostwritten by Charles Nemeroff. I can only assume it was intended as a noble lie.
The history of how diabetes was discovered is a fascinating story and one that could hardly be more different to the modern story of autism. It didn't involve rating scales, operationalised criteria, patient advocacy groups, philosophers, epidemiology, statistics, GWAS, Twitter, Reddit, RCTs, meta-analysis, or any of the things that make autism look like a giant ethereal blob. The separation of type 1 and type 2 also proceeded in the same way as previous discoveries. Himsworth's discovery was induction based on careful empirical observations.
You get a lot of things right in this article, but I think you’re missing the main point. The reason so many ordinary people have trouble believing the current category is because it violates their pattern recognition. Much in the same way our ancestors recognised a tiger or a duck, most people intuitively sense that something "just isn't right" about the overexpansion of autism. I think we need to stop gaslighting Blind Freddy. I can’t understand the scientific impulse to expand rather than refine; it baffles me.
To be clear I have no problem with hard and soft autism. Family studies support the notion and as I say, you get a lot of things right. I just don't think we're talking about that kind of gradation anymore.
I appreciate the comment about the blurring of lines in the public ('What has happened over the past two decades...'), I noticed this trend ramping up as a resident when patients started consulting 'doctor google', now its ChatGPT/AI. In the former context I would send them to reputable websites to understand distinctions, in the latter I discuss clear prompting and requests for citations that we review together and a discussion of animal studies vs human studies. This is a learning curve for us all!
Diagnostic cloudiness occurs in other areas in psychiatry- not just amongst patients but also clinicians.... That is a separate and sizable topic. In my own work a bipolar diagnosis can -at times- be a catch all for 'we are not sure whats going on with this mood disregulation thing.' In the context of substance use disorders (I'm an addiction psychiatrist amongst other things) it means clear diagnostics to distinguish the effects of substances on mood and patiently ruling out a personality disorder vs trauma (ptsd) - the latter being a great imitator. Even without substance use in the picture, clarification does make a difference in course of care, maintenance and recovery. It is an interesting process when a diagnosis is changed (to, lets say, one of the latter two) - how a person receives it, how it shifts their involvement in their self-care.
Finally, I read into the context of this NYT article a political layer, because one (controversial) public figure describes himself as having this diagnosis (whether its true or not), it stirs a desire for distinction (not just clinical, my sense it may be influenced by party lines).
Thanks for this discussion!
Thank you Sonya! I agree
Hi, Awais, I wanted to comment, but I had too much to say so I wrote my own post. Very nostalgic for my blogging days. https://dinah183.substack.com/p/is-the-spectrum-too-spectrumy