I'm actively not seeking diagnosis until I am done with medical transition, since unfortunately it is a lot harder for autistic trans people to access it - usually the desire to transition is viewed as part of the autism (never mind that lots of non-trans autistic people exist) and not viewed as 'legitimate'. There is a huge amount of sadly quite mainstream moral panic about neurodiversity rates in trans people, when really it makes sense to any ND person that gender dysphoria would not be able to be ignored as much as an NT person might be able to do.
Also, I was another one who preferred to spend lunchtimes in the library rather than the playground. What others have said about other children being able to diagnose you is so true.
There are various online tests that can give an indication. I've just done the one at https://www.clinical-partners.co.uk/for-adults/autism-and-aspergers/adult-autism-test/ and scored 26/30 which indicates 'you have a strong likelihood of Asperger’s Syndrome or autism.' I'm still debating about whether or not to go for a formal diagnosis, but having got to age 61 and 'managed' without special treatment, or without even being aware of why I was so different (until the penny dropped in the past few years with so much more awareness of Autism) I think I'll probably just continue to muddle through. Much of what Christine said on the programme mirrored my own experiences, and like her I find it very helpful to understand why I am the way I am.
There are various online tests that can give an indication. I've just done the one at https://www.clinical-partners.co.uk/for-adults/autism-and-aspergers/adult-autism-test/ and scored 26/30 which indicates 'you have a strong likelihood of Asperger’s Syndrome or autism.' I'm still debating about whether or not to go for a formal diagnosis, but having got to age 61 and 'managed' without special treatment, or without even being aware of why I was so different (until the penny dropped in the past few years with so much more awareness of Autism) I think I'll probably just continue to muddle through. Much of what Christine said on the programme mirrored my own experiences, and like her I find it very helpful to understand why I am the way I am.
Without being morbid, one thing to think about is if, in the future, you find yourself in need of care, it might be useful for carers to know if (and more particularly how) you're autistic. I doubt there's a lot of research on this but I wouldn't be at all surprised if dementia or Alzheimer's in autistic folk is associated with a break down in masking and an apparent increase in autistic behaviour. You now may not need tailored support but you in the future might.
I note they say “The questions are based on an evidence-based screening tool” rather than it is and evidence based screening tool (and I haven’t tried to do it or compare it to anything so I really don’t know). However, the AQ was developed here: https://www.autismresearchcentre.com/tests/ They have a number of tools on the site, and some warnings about how they should be used and/or interpreted.
I am not diagnosed though, and I don’t think I’d meet criteria. I am not sure what to make of it really. I had an autistic lodger who tried to convince me I may be on the spectrum
Though often what lies in the background is the idea of the spectrum of 'normal' behaviour, with deviations beyond that being seen as disorders of varying degrees of severity. This giving rise to both misdiagnosis at the margins and the possibility of medicalising particular forms of behaviour (which seems much more prevalent in the US).
Took the test, got "borderline." I'm fairly sure it's because I have no interest in what people look like (being faceblind and fashion-insensitive) and because I have little interest in all in spontaneous stuff. But then, who would after growing up with unpredictable, abusive adults?
One of the young people I worked with/put all the paperwork together for him to get a statement had a diagnosis of reactive attachment disorder, which presented as being on the autistic spectrum. He had been adopted after an abusive childhood.
It made me wonder about a number of other young people I worked with who had difficult childhoods and sometimes diagnoses of being on the autism spectrum. And working in the field I have I have seen a lot of young people from very difficult childhoods.
I have been following this thread with interest. My grandson is on the spectrum but is quite high functioning. We first noticed this when he was about two. We had given him an alphabet set with one letter missing. He immediately locked onto the missing letter. He refused to accept the set. He has to wear noise silencing headphones when he flies to visit his other grandparents. His most pressing problem is not being able to control anger, but he is getting good one on one behavioral therapy and has definitely improved over the past couple of years. Brilliant kid. While he is in the second grade he reads at middle school level. Loves math. For the longest time he did not like to write because his letters were not perfect enough, but he seems to have gotten over that barrier now. He also loves to draw. He has been working on a graphic novel in his spare time--not that it is ever going to be published, but he loves to show us what he has been working on.
Many in the autistic community get a little worried when they heard the word "therapy" - there is such a thing as ABA which is touted as therapy but is Considered Harmful.
There can be a place for considering how to approach specific difficulties is one thing; trying to make a person effectively not be autistic is another.
I think this is possibly a follow-up to the OP question.
First please accept I am not suggesting this is a viewpoint that you approve of, probably I think the opposite is the case. But it does at least name an issue that needs looking at.
I am totally unconvinced that we can classify people as neuro-diverse or neuro-typical, and no I'm not a neurologist But as I look at people there are all kinds of behaviour patterns many of which I find bizarre, and I suppose we can try and link those to some sort of neurological variation, although I'm not even sure this is proven. And it gets worse if we make neuro-diverse to mean autistic.
Are dyslexic people then neuro-typical? What about stupid people? (e.g. Qanon believers?) What is supposed to be meant by neuro-typical? It is just the way most people (seem) to think? How big a majority do you need? Go that way and you'll end up with homosexuality being a form of neuro-diversity. And why not, if you don't equate diverse with bad. You may equate it with good.
Hidden text re multiple sensitive issues being brought into the thread
I also don't like the tendency to think it's cruel somehow to suggest that anything should be viewed not just as diverse but pathological.
I don't think of the inability to acquire language simply as a diversity.
Hidden text re additional sensitive issue being brought into the thread
(ETA hidden text, Doublethink, Temporary Hosting )
I think one of the things this thread shows, is that people have a wide range of experiences. If the application or refusal of particular labels has led folk to be harmed or distressed, they are likely to react strongly to hearing those words or phrases - however well meant.
@Anteater there are a number of issues with your post, per admin posts past - we try to avoid portmanteau threads covering multiple topics. I also note host posts earlier in this thread stating that we should not bring in multiple sensitive issue to the thread as analogies / examples (as per the Purgatory guidelines that are referenced in the guidelines in for this board.)
I am therefore going to hidden text some portions of your post.
This will be the second host post on this issue to you, so may I please ask you to step back from the thread for a day. Perhaps reading through ongoing posts on the thread will help clarify some issues you are concerned about
The thing that strikes me from @anteater's post (the non-spoilered bit) is that no, autistic and neuro-diverse are not synonyms. We'd be getting beyond the scope of this thread to go further, but things like ADHD, Dyslexia and Dyspraxia come under the Neuro-diverse umbrella.
There is indeed no hard defining line between Neurotypical and Neurodivergent. Nevertheless, behaviour and though patterns do tend towards bell shaped distributions and those in the tails do indeed differ considerably from the typical. It's an interaction between environment and individual - a given individual may experience considerably more impairment in a society that strongly values conformity than one which celebrates individuality. I experience considerably less social impairment than I did at school because (a) adults are more accommodating and less given to ripping the piss than kids, and (b) I can choose my social circles more now.
Diagnosis of course is binary - you are diagnosed with a condition or you are not - according to meeting certain criteria associated with that condition. It doesn't mean reality is neatly binary.
You can have ADHD and no behaviour traits that are visible to other people. Especially girls, it is very much under-diagnosed in girls.
It is indeed a neurological difference, the neurotransmitters involved in executive functions are low/weak/missing. That’s why medication works. They are stimulants which stimulate the production of the neuro-transmitters needed.
And that’s also the reason many people self medicate - caffeine etc.
Diagnosis of course is binary - you are diagnosed with a condition or you are not - according to meeting certain criteria associated with that condition. It doesn't mean reality is neatly binary.
I absolutely agree. I’ve been sure my son is on the ASD spectrum since he was a teenager. I didn’t mention it but, last week I heard him on the phone saying ‘us Aspergers folk should stick together’. He’s an airline pilot soon to qualify as captain. All the ASD struggles he has had are personal, not behavioural. For example he’s very neat. Can’t go long without food. Tends to black/white thinking etc.
Also hoping this isn't straying too far out of the thread topic, but it's really common for autistic people to have multiple diagnoses of different forms of neurodiversity, and some forms of neurodiversity seem to be more likely to pair up with others. For eg autistic people who also have ADHD are really not unusual, and if they are assigned female at birth that's also more likely to come with the spatial processing difficulties like dyspraxia and dyscalculia (as well as a strong correlation with having skin and connective tissue issues like Ehlers Danlos). I've only very rarely encountered autistic people who didn't experience some other type of neurodiversity on top of that. It makes sense to me that differences in neurological wiring would end up causing multiple diagnoses. This can be a problem when the different diagnoses work closely together but some are stigmatised more than others - eg, an ADHD or dyspraxia diagnosis wouldn't cause problems for me accessing medical transition, but an autism diagnosis would, even though they are such closely linked conditions.
The issue of variability arises when you think that the couple have been together ten+ years without Paddy realising that his wife was autistic. It is true that Christine herself was not surprised and confessed to always having known there was 'something not quite right' and that she needed to more or less confect here life to fit in. Which is what masking is all about, and she obviously did it remarkably well.
This isn't quite what Christine has said. What she has said, in the article linked above, is that Paddy was originally unaware of autism until his children were diagnosed, and when he started reading up on it he had already realised that Christine was on the spectrum before she was diagnosed.
Also hoping this isn't straying too far out of the thread topic, but it's really common for autistic people to have multiple diagnoses of different forms of neurodiversity, and some forms of neurodiversity seem to be more likely to pair up with others.
I've seen this tendency too, although I've never been sure how much of it is real vs how much is selection bias. Someone with "just" autism in a fairly maskable presentation doesn't stick out as much as someone with other issues, so is less likely to present for diagnosis.
Gwai, with all due respect, I don't think posting these scores is a Circus thread and therefore not related to the seriousness of the thread. this is not a questioning of a hostly ruling. I took the test and posted it in the context of my son's neurologist positing that I might have a "ghost autism". I am sorry if I did not make that context clear 9which i had mentioned above) when posting my score.
Yes; I posted mine to compare Caissa's "Ghost of autism" with that of a diagnosed person. I should have been clearer.
Regarding co-mordities there might be some selection bias but it seems, anecdotally, to be very common. Followers of the League of Fitness thread will be aware of a lack of sporting ability in me, for example, that don't half smell like dyspraxia.
Yes; I posted mine to compare Caissa's "Ghost of autism" with that of a diagnosed person. I should have been clearer.
Regarding co-mordities there might be some selection bias but it seems, anecdotally, to be very common. Followers of the League of Fitness thread will be aware of a lack of sporting ability in me, for example, that don't half smell like dyspraxia.
You've got me wondering now, as someone who excelled at the running into people parts of rugby and hockey but failed at the ball skills bits, and struggle to hit a ball with anything smaller than a tennis racket.
@Caissa . Fair and thanks for clarifying your reasoning.
However, I think my opinion holds albeit for a different reason. The issue for me is that since it has already been noted on this thread that said test is non-diagnostic it counts as a possibly misleading source if done seriously.
For various reasons, I am on the monthly email list from The Lancet, and this month they are launching a Commission on Autism because as they put it:
Awareness of autism has grown monumentally over the past 20 years. Yet, this increased awareness has not been accompanied by improvements in services to support autistic individuals and their families. Many fundamental questions remain about the care of people with autism—including which interventions are effective, for whom, when, and at what intensity.
It's a five year commission, with a number of articles linked on that page. I've brought it here as I found it interesting that the suggestions were about support and investigating effective interventions, not cure. Having just checked, many of the articles are available free of charge but require registration.
I've brought it here as I found it interesting that the suggestions were about support and investigating effective interventions, not cure.
Whether or not a "cure" is desirable, one does not currently exist. It is reasonable in current circumstances, however, to do a big data study on which interventions are helpful, and have positive outcomes. The fact that, with the current knowledge, you can think about doing the latter but not the former, is not a statement either way about whether you would support a cure.
I've brought it here as I found it interesting that the suggestions were about support and investigating effective interventions, not cure.
Whether or not a "cure" is desirable, one does not currently exist. It is reasonable in current circumstances, however, to do a big data study on which interventions are helpful, and have positive outcomes. The fact that, with the current knowledge, you can think about doing the latter but not the former, is not a statement either way about whether you would support a cure.
You need to take a step back though and define "positive outcomes". There is sometimes an unspoken assumption that that means "not seeming to be autistic".
I've brought it here as I found it interesting that the suggestions were about support and investigating effective interventions, not cure.
Whether or not a "cure" is desirable, one does not currently exist. It is reasonable in current circumstances, however, to do a big data study on which interventions are helpful, and have positive outcomes. The fact that, with the current knowledge, you can think about doing the latter but not the former, is not a statement either way about whether you would support a cure.
You need to take a step back though and define "positive outcomes". There is sometimes an unspoken assumption that that means "not seeming to be autistic".
Quite. "Interventions" sets my alarm bells ringing because it makes me think ABA.
One of the commissioners is Alex Plank (link to Wikipedia), one of the creators of Wrong Planet and an autism advocate. One of the articles on the link is his introduction to himself and the project.
The clinician-researcher commissioner is Catherine Lord, who was involved in TEACCH and with Michael Rutter developing the ADOS measure.
In response to this challenge, our Commission proposes a novel, modified stepped care and personalised health model of intervention and assessment for individuals with autism and their families. One important necessity (but not always considered in such models) is that treatment and support takes into account the preferences, needs, and costs (financial and otherwise) to individuals and families at each step. These individual differences across autistic children, adolescents, adults, and their families are nested within communities, cultures, and social systems that must also be considered.
Simon Baron-Cohen is not listed as one of the authors of this executive summary.
The Executive Summary also says that they have consulted widely:
This Commission brought together stakeholders in autism from six continents and a range of perspectives, including clinicians and other health-care providers, researchers, advocates, self-advocates, and parents to address the future of health care in autism.
You need to take a step back though and define "positive outcomes". There is sometimes an unspoken assumption that that means "not seeming to be autistic".
I think for me "positive outcomes" mean that a person is better equipped to deal with whatever life throws at them. "Looking autistic" isn't something I much care about; not doing the ostrich head-in-the-sand thing in response to anxiety would be an example of a positive outcome.
Quite. "Interventions" sets my alarm bells ringing because it makes me think ABA.
Fair enough. Interventions is just a word. Anything that you do to try and help someone with their specific issues is an intervention. (It's also reasonable to ask whether strategies developed to help autistic kids might also be useful for neurotypical kids. Perhaps it's not an intervention so much as a better way of teaching.)
Basically, anything that makes a person look more neurotypical has no positive value to me, whereas making a person more resilient is an improvement. If an autistic kid is struggling in a classroom environment that encourages chatter, perhaps a more formal, traditional classroom where silence is the norm works better.
Interesting. From the articles, it reads as though Thinking Autism is reacting to the Spectrum article, rather than the Executive Summary in the Lancet. Particularly as they only link to the Spectrum article.
Yes, and the Spectrum article is more balanced, less negative - and they note their parent company has representatives on the commission.
The more negative article is from Thinking Autism and my impression from reading all three articles was that this article was referring to the Spectrum article, not the Lancet documents.
Curiosity, I reference this because there has been a fair bit of concern online and my concern is that non-autistic people don't think they can just erase or dismiss those voices because they're not in a prestigious publication.
But I won't at the moment be posting much on this thread (and I'm certainly not hosting) because there have been posts here which though within the rules are intensely hurtful and upsetting for me and I don't have the spoons to engage with them politely (I'm not meaning you - but just dipping my toe in without saying too much has been hard)
That's a shame (I've since gone looking and seen the negative commentary). I should know after experience with the CFS/ME community that there is still too much reliance on expert voices from theory, without listening to patient voices, in too many fields. And when the theories behind psychiatry and psychology are still currently in such early stages, those theories are often, later, proved incomplete, at the very least.
I just hoped that involving someone on the spectrum as part of the commissioners would be positive.
Comments
Also, I was another one who preferred to spend lunchtimes in the library rather than the playground. What others have said about other children being able to diagnose you is so true.
Without being morbid, one thing to think about is if, in the future, you find yourself in need of care, it might be useful for carers to know if (and more particularly how) you're autistic. I doubt there's a lot of research on this but I wouldn't be at all surprised if dementia or Alzheimer's in autistic folk is associated with a break down in masking and an apparent increase in autistic behaviour. You now may not need tailored support but you in the future might.
Though often what lies in the background is the idea of the spectrum of 'normal' behaviour, with deviations beyond that being seen as disorders of varying degrees of severity. This giving rise to both misdiagnosis at the margins and the possibility of medicalising particular forms of behaviour (which seems much more prevalent in the US).
It made me wonder about a number of other young people I worked with who had difficult childhoods and sometimes diagnoses of being on the autism spectrum. And working in the field I have I have seen a lot of young people from very difficult childhoods.
There can be a place for considering how to approach specific difficulties is one thing; trying to make a person effectively not be autistic is another.
I think this is possibly a follow-up to the OP question.
I am totally unconvinced that we can classify people as neuro-diverse or neuro-typical, and no I'm not a neurologist But as I look at people there are all kinds of behaviour patterns many of which I find bizarre, and I suppose we can try and link those to some sort of neurological variation, although I'm not even sure this is proven. And it gets worse if we make neuro-diverse to mean autistic.
I also don't like the tendency to think it's cruel somehow to suggest that anything should be viewed not just as diverse but pathological.
(ETA hidden text, Doublethink, Temporary Hosting )
I am therefore going to hidden text some portions of your post.
This will be the second host post on this issue to you, so may I please ask you to step back from the thread for a day. Perhaps reading through ongoing posts on the thread will help clarify some issues you are concerned about
Thanks
Doublethink, Temporary Hosting
There is indeed no hard defining line between Neurotypical and Neurodivergent. Nevertheless, behaviour and though patterns do tend towards bell shaped distributions and those in the tails do indeed differ considerably from the typical. It's an interaction between environment and individual - a given individual may experience considerably more impairment in a society that strongly values conformity than one which celebrates individuality. I experience considerably less social impairment than I did at school because (a) adults are more accommodating and less given to ripping the piss than kids, and (b) I can choose my social circles more now.
Diagnosis of course is binary - you are diagnosed with a condition or you are not - according to meeting certain criteria associated with that condition. It doesn't mean reality is neatly binary.
It is indeed a neurological difference, the neurotransmitters involved in executive functions are low/weak/missing. That’s why medication works. They are stimulants which stimulate the production of the neuro-transmitters needed.
And that’s also the reason many people self medicate - caffeine etc.
@KarlLB said -
I absolutely agree. I’ve been sure my son is on the ASD spectrum since he was a teenager. I didn’t mention it but, last week I heard him on the phone saying ‘us Aspergers folk should stick together’. He’s an airline pilot soon to qualify as captain. All the ASD struggles he has had are personal, not behavioural. For example he’s very neat. Can’t go long without food. Tends to black/white thinking etc.
Thanks,
Doublethink Temporary Hosting
Sorry.
Oh, that was me, too!
25
Gwai,
Epiphanies Host
This isn't quite what Christine has said. What she has said, in the article linked above, is that Paddy was originally unaware of autism until his children were diagnosed, and when he started reading up on it he had already realised that Christine was on the spectrum before she was diagnosed.
I've seen this tendency too, although I've never been sure how much of it is real vs how much is selection bias. Someone with "just" autism in a fairly maskable presentation doesn't stick out as much as someone with other issues, so is less likely to present for diagnosis.
Regarding co-mordities there might be some selection bias but it seems, anecdotally, to be very common. Followers of the League of Fitness thread will be aware of a lack of sporting ability in me, for example, that don't half smell like dyspraxia.
You've got me wondering now, as someone who excelled at the running into people parts of rugby and hockey but failed at the ball skills bits, and struggle to hit a ball with anything smaller than a tennis racket.
However, I think my opinion holds albeit for a different reason. The issue for me is that since it has already been noted on this thread that said test is non-diagnostic it counts as a possibly misleading source if done seriously.
Gwai
Epiphanies Host
It's a five year commission, with a number of articles linked on that page. I've brought it here as I found it interesting that the suggestions were about support and investigating effective interventions, not cure. Having just checked, many of the articles are available free of charge but require registration.
Whether or not a "cure" is desirable, one does not currently exist. It is reasonable in current circumstances, however, to do a big data study on which interventions are helpful, and have positive outcomes. The fact that, with the current knowledge, you can think about doing the latter but not the former, is not a statement either way about whether you would support a cure.
You need to take a step back though and define "positive outcomes". There is sometimes an unspoken assumption that that means "not seeming to be autistic".
Quite. "Interventions" sets my alarm bells ringing because it makes me think ABA.
The clinician-researcher commissioner is Catherine Lord, who was involved in TEACCH and with Michael Rutter developing the ADOS measure.
The full executive summary gives this outline:
Simon Baron-Cohen is not listed as one of the authors of this executive summary.
The Executive Summary also says that they have consulted widely:
I think for me "positive outcomes" mean that a person is better equipped to deal with whatever life throws at them. "Looking autistic" isn't something I much care about; not doing the ostrich head-in-the-sand thing in response to anxiety would be an example of a positive outcome.
Fair enough. Interventions is just a word. Anything that you do to try and help someone with their specific issues is an intervention. (It's also reasonable to ask whether strategies developed to help autistic kids might also be useful for neurotypical kids. Perhaps it's not an intervention so much as a better way of teaching.)
Basically, anything that makes a person look more neurotypical has no positive value to me, whereas making a person more resilient is an improvement. If an autistic kid is struggling in a classroom environment that encourages chatter, perhaps a more formal, traditional classroom where silence is the norm works better.
http://www.thinkingautismguide.com/2021/12/creating-profound-autism-category-is.html?m=1&s=09
https://www.spectrumnews.org/news/first-of-its-kind-commission-defines-profound-autism-issues-recommendations/?s=09
The more negative article is from Thinking Autism and my impression from reading all three articles was that this article was referring to the Spectrum article, not the Lancet documents.
But I won't at the moment be posting much on this thread (and I'm certainly not hosting) because there have been posts here which though within the rules are intensely hurtful and upsetting for me and I don't have the spoons to engage with them politely (I'm not meaning you - but just dipping my toe in without saying too much has been hard)
I just hoped that involving someone on the spectrum as part of the commissioners would be positive.