BBC In Depth: the ongoing battle to define autism

What if... there turned out to be more autistics than NT's? Yippee!!!!!!!

I would never have thought of using equality legislation like this. It's a good idea, though and I will use it if I need too. We're lucky that we have a centre ofr the unemployed here that does a lot of advocacy work. I've become very sceptical about CAB though, they seem more an arm of the state than an independent organisation helping ordinary people. Our's has a "triage" system where they assess your problem, that you told them about in a short message or email form and then reach a desicion about whether they're going to help you, which in itself takes about 6 weeks, then you have to wait for an appointment. They only do benefits work now too.

Don't get me wrong I'm not anti tech, and the problems I see with it's increased use are because of the tech itself but the humans who control it and set the parameters for how it will be used. It's those I distrust and as we've not sorted enough of the things that "computer says no" too. The computer seems all powerful and nobody has the power to gainsay it, even when they know its wrong, like when my parents tried to get a credit card with a £500 limit, just for use online, hte computer said no as they had no credit hstory, having paid off thier mortgage and having no outstanding loans. The woman doing the checks said it was crazy as she could seen they had plenty of money to cover a £500 limit, but there was nothing she could do.

What do you propose for those who can't use digital services?

They might be the products of human ingenuity, but humans have a long record of being stupid with their cleverness. I just don't share your views on tech, I don't think it will provide the answers you hope for, and what about those of us who can't do the tech side of it, who don't have the skill or equipment? I feel discriminated against and left out now and I don't see that getting any better in the future. Why does more tech have to be the answer to everything? It won't stop us being desriminated against, it won't make more people or services appear to help us, I think it will increase the narrative that all autistic people are good with tech and we'll get more tech and fewer people.

Sorry to be so long in specifically replying to your message here TheCatWoman.

The way that I see it is that the computers and the programs they run and the output they make are a product of human ingenuity.

My brain does the "what ifs" exactly the same as yours does - ad infinitum.  Though broadly speaking in respect of the questions that you have raised my answer is that "where there is a will there is a way".

In the context of the initial post for this thread, my biggest fear is that the human ingenuity used is biased against autistic people and the damage that bias causes - the human isolation that you describe so powerfully and the wider downplaying of the messages that all the "canaries in the coal mine" autistic people are giving for all of neurodiversity,

I have been wondering about setting up another thread that focuses specifically on how members here experience socio-political issues, such as those that have emerged in this thread on the diagnostic debate, and how they manage them.

I hope that wondering about these issues as we have and what to do about them and continue to do in our conversataions here can and will be shown to make for better outcomes.

Best Wishes

I'm putting this post here so as I can answer Peter and Phased.

Sorry the maths stuff went right over my head, I'm not entirely sure what an integer is.

In your vision of AI diagnosing autism, I'm guessing you mean it doing it via some sort of zoom meeting?

What if one dosen't have the tech to do this?

What if one's tech skills are to poor to use it?

What if you're totally paranoid about having your photo taken and avoid looking at cameras? Even if you were sat in front of one, but kept your head down and didn't look at it, I know people do this to humans too, but with autism and eye contact, I imagine this could be another difficulty.

At our GP's they have a system where you register your arrival on a screen and another screen call you when the doctors ready to see you. The screen keeps crashing, screens are often poor at registering finger taps when one wears gloves or has dry skin, the most hilarious bit is listening to the screen try and pronounce peoples names, its a good job they put them in writing too or nobody would understand a thing! It's not just traditional Welsh names it has problems with, but many normal English one too. I tries to pronounce every letter, so names like "John", "Hugh", "Anne" and "Jane" it really struggles with, let alone names like Lloyd or Dafydd, it stutters. If tech thats being rolled out now can't cope with these simple things, how will it cope with more complex things, I do realised that speech is more complicated for a machine than it sounds. But, how will it cope with dialects? Or would it all be done via keyboard or touch screen, how will it cope with visual impairment?

I don't have to imagine something because others already have? Hmmm, would these be the same people who make "intuitive" things like phones? Because they seem anything but intuitive, in the case of phones they maybe intuitive if you've had every model since the first, but if you come in at the middle, it feels like being handed an instrument you've never played before and made to sit in the middle of an orchestra in full swing and told you'll pick it up fine because it's intuitive.

I'm not sure I trust other peoples imaginations.

I think my biggest fear with things like this is "computer says no", we've all had experiences of this sort of insanity and I fear it will only get worse, with fewer overrides from humans, that the AI will go rogue and stop the humans disagreeing wth it.

I'm playing devils advocat here, because I don't understand tech, but I'm on the recieving end of a lot of unintended consequenses from it and probably some of those are from the imaginations of techie people building THEIR ideal world. 

I'm also wary of tech being shoved at autistic people and other with leaning difficulties etc, it can be a great help, but what messages is it sending out? Ones that you're too complicated for humans, that you're not a "proper" human and "they", NT's don't want to have anyting to do with you,so you become more isolated and alone and still wondering why you feel lonely and would like others to talk too, to cuddle, to have a relationship and children with? 

hehe - possibly too much information but you post has just reminded me that I need to visit the loo...

You have every right to be suspicious of "body language experts".  I should know as, in some ways, I made a career out of it.

Somewhat ironic given that I get so engrossed in things that i don't even notice what my own digestive system needs are!

Yeah, that scares the cr*p out of me a bit  I have always been very suspicious of "body language experts" 

Understood  - those AI systems viewing facial and eye movements reminded of the science fiction of "Blade Runner".

W/r/to those "tells" I was especially interested and alluding to this scoping review https://pmc.ncbi.nlm.nih.gov/articles/PMC12620671/  there are also individual studies worth looking at -

"digital medicine" is another way of putting a finger on the pulse :-)

Sorry, I can't seem to get the "quote" option to work but the AI response to the turnip question is exactly what I would have expected to a text input query. I was referring more to the logic behind the interface and the programming. The AI can only process what it understands as processable. Something like a nod of the head or a physical reaction to a given question would not play a part in how an AI would process a response because it can't see it. Slight changes in facial expression even previous behaviour that an AI would not be aware of.

In saying that I am also a big science fiction fan so I obviously can't rule out some type of fully autonomous artificial being in the future but I think we are a fair bit away from that at the moment

Please excuse my answering you 2 good people in 1 response -

Unknown said:

5+5=10, 20-4=16 but if it comes to 10+turnip=? What will it do?

I've just run that thro' the AI I use and it has replied:

"Because you cannot mathematically add an integer to a root vegetable, the answer depends entirely on how you want to play it:......... 

you don't have to imagine how an AI could be used because other people already have.

AI can detect the exact same behavioural cues a clinician looks for, but it does so by breaking them down into precise measurable data.

yep- the Ai I use can "see that" by recognising it in a search and says it's a joke too

PS love Dawn French :-)

AI training is still something they have not really perfected I think. I was involved in programming very early forms of AI. It was just datasets with basically if/then decision trees. Basically  a questionnaire with a list of possible responses based on user choices. That then develops to expanding the datasets based on responses entered. This still needed human intervention to make sure the data in the datasets were valid. Still based on preprogrammed if/then decision trees which can be added to based on new data gathered. It is all manageable and simple to this point. But modern AI systems not only write their own datasets they now write their own decision trees (theoretically based on decision trees parameters set by humans) but these become so large so quickly that regardless of how well a company claims they manage a self learning AI system at some point it becomes impossible and impossible to find where the route of a potential problem began, they are just far too vast for even the largest team of developers to manage. So I would not trust an AI to be able to, as you say easily recognise subtle changes or idiosyncrasies in human behaviour or stick to any type of parameters that would try to ensure this. 

I suppose what I mean is that any computer system works on logic.

5+5=10, 20-4=16 but if it comes to 10+turnip=? What will it do?

I just told Co-pilot the joke and it did recognse  it as a joke and a very British one at that, but we had been talking about absurdist British humour yesterday and I think it just picked up on it.

Do you think so? So many computer programs have problems and biases that are quite subtle depending on who's training/programing them. Even things like facial recognition programs are less likely to be acurate for non white or South East Asian populations, we're unconciously building these biases in. In this case though I wonder what it says about the people who are giving these programs their learning material?

Do you see the AI diagnosing autism as learning on the job as it were? If so then what about the people it missed whilst gaining experience, I know this can happen with newly qualified humans too, but would the AI have the wit to ask a colegue and would it have the sort of professional supervision that many humans have to have?

I agree that computors are better at sorting through large amounts of data faster than humans can and I can see that for medical screening, of things like mammograms they're faster and just as or even more acurate than humans. But I think that is different to  how we experience the world and so much of autism is about our experiences in the world. A human for example could ask for an example of being humiliated at school and have an empathetic response, but how does a machine learn that response? I think a good example of this comes from when I used a joke whilst I was talking to AI and it took me seriously and came out with scads of serious stuff about this joke and wasn't even sure when I told it it was a joke comment and not to be taken seriously and this is with something that knows my conversational style. I can't imagine how a machine that didn't know my conversational style would even hope to pick up on the subtlties of human communication in a diagnostic situation.

Maybe as an experiement we could tell our AI's the same joke, not tell them we're telling them a joke, but just to see how it responds, we'd have to tell it the same joke, so heres mine.

Cuthbert was an inflatable boy, who went to an inflatable shool and one day the head master came up to him and said 'Cuthbert!, You've been found running in the school corridors with a drawaing pin and I want you to know that not only have you let me and the school down, but you've let yourself down too',

Yes you are more skeptical on these matters than I TheCatWoman.

Broadly speaking you ask how would the AI learn to understand differences - I would answer that question by saying that it would learn to.  I agree with the core rule "garbage, in garbage out" for the use of any system, computer or tool (hehe except that as is also said "one man's junk is another man's treasure").

Computers are in my opinion far better at handling vast amounts of data and complexity than human beings - yes they can be biased of course but that bias in my opinion is easier to resolve in them than in most humans

The childhood form you mention is interesting. I was sent a form, but had no one to complete it which they accepted and I did in my meeting mention things I remember. I was glad I didn't have a parent to answer that, as my last surviving parent remembered very little of my childhood and probably would have said no difficulties. 

I was diagnosed before DSM-5 came out, I don't know what criteria I was diagnosed under, I had half a dozen meetings with a psychologist. I don't know what paperwork is involved in the tests we have now.

I think I'm more sceptical than you about the benefits of AI in this sort of scenario, theway you describe it being used sounds great, but would it actually be used that way? Or would the autistic people prefer tech to human contact thing take over and it all become computerised? I think one of the problems with an AI approach and maybe the tests used currently are with so many older people being diagnosed is it nuanced enough? Would it be able to get that some people struggle with tech because of age, that they may never have played a computer game, that the cultural references maybe totally different? For example, if asked about food, I suspect many older people would give totally different answers to younger people. When I was a child you ate what was put in front of you, a smaller portion of what your parents ate, there were no "childrens foods", things like chicken were a bit of a luxury, crisps and fizzy pop were luxories too, not everyday foods, so the beige diet that so many autistics prefer might not have been possible for us latelings. Also, in other cultures, such as Indian and Italian, food is a massive thing, sitting round the table, eating loads of home made food, foods made by your gran and aunts, it would be a massive insult not to eat it and to say you don't like it. You learn to eat what you don't like so much from being told to eat it and not being allowed to get away with not eating and sitting around the table. I believe Chinese culture's the opposite, they eat as fast as possible and don't take time over food and think we're weird to "waste" so much time cooking and eating. How would AI deal with these cultural differences?

Obviously I don't know what the tests involve but I hope all the above gives an example of the complexities that would need to be trained into AI.

How would AI cope if there were sections of the testing that you couldn't complete, like I couldn't do the tessalation test I was given. I don't have an informant and I suspect many others don't either. What if the informant you do have is undiagnosed themselves what they'd see as normal childhood behaviour might be normal for an autistic person, so they might say that your childhood was normal, as it was similar to theirs.

I was diagnosed before DSM-5 came out, I don't know what criteria I was diagnosed under, I had half a dozen meetings with a psychologist. I don't know what paperwork is involved in the tests we have now.

I think I'm more sceptical than you about the benefits of AI in this sort of scenario, theway you describe it being used sounds great, but would it actually be used that way? Or would the autistic people prefer tech to human contact thing take over and it all become computerised? I think one of the problems with an AI approach and maybe the tests used currently are with so many older people being diagnosed is it nuanced enough? Would it be able to get that some people struggle with tech because of age, that they may never have played a computer game, that the cultural references maybe totally different? For example, if asked about food, I suspect many older people would give totally different answers to younger people. When I was a child you ate what was put in front of you, a smaller portion of what your parents ate, there were no "childrens foods", things like chicken were a bit of a luxury, crisps and fizzy pop were luxories too, not everyday foods, so the beige diet that so many autistics prefer might not have been possible for us latelings. Also, in other cultures, such as Indian and Italian, food is a massive thing, sitting round the table, eating loads of home made food, foods made by your gran and aunts, it would be a massive insult not to eat it and to say you don't like it. You learn to eat what you don't like so much from being told to eat it and not being allowed to get away with not eating and sitting around the table. I believe Chinese culture's the opposite, they eat as fast as possible and don't take time over food and think we're weird to "waste" so much time cooking and eating. How would AI deal with these cultural differences?

Obviously I don't know what the tests involve but I hope all the above gives an example of the complexities that would need to be trained into AI.

How would AI cope if there were sections of the testing that you couldn't complete, like I couldn't do the tessalation test I was given. I don't have an informant and I suspect many others don't either. What if the informant you do have is undiagnosed themselves what they'd see as normal childhood behaviour might be normal for an autistic person, so they might say that your childhood was normal, as it was similar to theirs.

I would never have thought of using equality legislation like this. It's a good idea, though and I will use it if I need too. We're lucky that we have a centre ofr the unemployed here that does a lot of advocacy work. I've become very sceptical about CAB though, they seem more an arm of the state than an independent organisation helping ordinary people. Our's has a "triage" system where they assess your problem, that you told them about in a short message or email form and then reach a desicion about whether they're going to help you, which in itself takes about 6 weeks, then you have to wait for an appointment. They only do benefits work now too.

Don't get me wrong I'm not anti tech, and the problems I see with it's increased use are because of the tech itself but the humans who control it and set the parameters for how it will be used. It's those I distrust and as we've not sorted enough of the things that "computer says no" too. The computer seems all powerful and nobody has the power to gainsay it, even when they know its wrong, like when my parents tried to get a credit card with a £500 limit, just for use online, hte computer said no as they had no credit hstory, having paid off thier mortgage and having no outstanding loans. The woman doing the checks said it was crazy as she could seen they had plenty of money to cover a £500 limit, but there was nothing she could do.

What do you propose for those who can't use digital services?

They might be the products of human ingenuity, but humans have a long record of being stupid with their cleverness. I just don't share your views on tech, I don't think it will provide the answers you hope for, and what about those of us who can't do the tech side of it, who don't have the skill or equipment? I feel discriminated against and left out now and I don't see that getting any better in the future. Why does more tech have to be the answer to everything? It won't stop us being desriminated against, it won't make more people or services appear to help us, I think it will increase the narrative that all autistic people are good with tech and we'll get more tech and fewer people.

Sorry to be so long in specifically replying to your message here TheCatWoman.

The way that I see it is that the computers and the programs they run and the output they make are a product of human ingenuity.

My brain does the "what ifs" exactly the same as yours does - ad infinitum.  Though broadly speaking in respect of the questions that you have raised my answer is that "where there is a will there is a way".

In the context of the initial post for this thread, my biggest fear is that the human ingenuity used is biased against autistic people and the damage that bias causes - the human isolation that you describe so powerfully and the wider downplaying of the messages that all the "canaries in the coal mine" autistic people are giving for all of neurodiversity,

I have been wondering about setting up another thread that focuses specifically on how members here experience socio-political issues, such as those that have emerged in this thread on the diagnostic debate, and how they manage them.

I hope that wondering about these issues as we have and what to do about them and continue to do in our conversataions here can and will be shown to make for better outcomes.

Best Wishes

I'm putting this post here so as I can answer Peter and Phased.

Sorry the maths stuff went right over my head, I'm not entirely sure what an integer is.

In your vision of AI diagnosing autism, I'm guessing you mean it doing it via some sort of zoom meeting?

What if one dosen't have the tech to do this?

What if one's tech skills are to poor to use it?

What if you're totally paranoid about having your photo taken and avoid looking at cameras? Even if you were sat in front of one, but kept your head down and didn't look at it, I know people do this to humans too, but with autism and eye contact, I imagine this could be another difficulty.

At our GP's they have a system where you register your arrival on a screen and another screen call you when the doctors ready to see you. The screen keeps crashing, screens are often poor at registering finger taps when one wears gloves or has dry skin, the most hilarious bit is listening to the screen try and pronounce peoples names, its a good job they put them in writing too or nobody would understand a thing! It's not just traditional Welsh names it has problems with, but many normal English one too. I tries to pronounce every letter, so names like "John", "Hugh", "Anne" and "Jane" it really struggles with, let alone names like Lloyd or Dafydd, it stutters. If tech thats being rolled out now can't cope with these simple things, how will it cope with more complex things, I do realised that speech is more complicated for a machine than it sounds. But, how will it cope with dialects? Or would it all be done via keyboard or touch screen, how will it cope with visual impairment?

I don't have to imagine something because others already have? Hmmm, would these be the same people who make "intuitive" things like phones? Because they seem anything but intuitive, in the case of phones they maybe intuitive if you've had every model since the first, but if you come in at the middle, it feels like being handed an instrument you've never played before and made to sit in the middle of an orchestra in full swing and told you'll pick it up fine because it's intuitive.

I'm not sure I trust other peoples imaginations.

I think my biggest fear with things like this is "computer says no", we've all had experiences of this sort of insanity and I fear it will only get worse, with fewer overrides from humans, that the AI will go rogue and stop the humans disagreeing wth it.

I'm playing devils advocat here, because I don't understand tech, but I'm on the recieving end of a lot of unintended consequenses from it and probably some of those are from the imaginations of techie people building THEIR ideal world. 

I'm also wary of tech being shoved at autistic people and other with leaning difficulties etc, it can be a great help, but what messages is it sending out? Ones that you're too complicated for humans, that you're not a "proper" human and "they", NT's don't want to have anyting to do with you,so you become more isolated and alone and still wondering why you feel lonely and would like others to talk too, to cuddle, to have a relationship and children with? 

hehe - possibly too much information but you post has just reminded me that I need to visit the loo...

You have every right to be suspicious of "body language experts".  I should know as, in some ways, I made a career out of it.

Somewhat ironic given that I get so engrossed in things that i don't even notice what my own digestive system needs are!

Yeah, that scares the cr*p out of me a bit  I have always been very suspicious of "body language experts" 

Understood  - those AI systems viewing facial and eye movements reminded of the science fiction of "Blade Runner".

W/r/to those "tells" I was especially interested and alluding to this scoping review https://pmc.ncbi.nlm.nih.gov/articles/PMC12620671/  there are also individual studies worth looking at -

"digital medicine" is another way of putting a finger on the pulse :-)

Sorry, I can't seem to get the "quote" option to work but the AI response to the turnip question is exactly what I would have expected to a text input query. I was referring more to the logic behind the interface and the programming. The AI can only process what it understands as processable. Something like a nod of the head or a physical reaction to a given question would not play a part in how an AI would process a response because it can't see it. Slight changes in facial expression even previous behaviour that an AI would not be aware of.

In saying that I am also a big science fiction fan so I obviously can't rule out some type of fully autonomous artificial being in the future but I think we are a fair bit away from that at the moment

Please excuse my answering you 2 good people in 1 response -

Unknown said:

5+5=10, 20-4=16 but if it comes to 10+turnip=? What will it do?

I've just run that thro' the AI I use and it has replied:

"Because you cannot mathematically add an integer to a root vegetable, the answer depends entirely on how you want to play it:......... 

you don't have to imagine how an AI could be used because other people already have.

AI can detect the exact same behavioural cues a clinician looks for, but it does so by breaking them down into precise measurable data.

yep- the Ai I use can "see that" by recognising it in a search and says it's a joke too

PS love Dawn French :-)

AI training is still something they have not really perfected I think. I was involved in programming very early forms of AI. It was just datasets with basically if/then decision trees. Basically  a questionnaire with a list of possible responses based on user choices. That then develops to expanding the datasets based on responses entered. This still needed human intervention to make sure the data in the datasets were valid. Still based on preprogrammed if/then decision trees which can be added to based on new data gathered. It is all manageable and simple to this point. But modern AI systems not only write their own datasets they now write their own decision trees (theoretically based on decision trees parameters set by humans) but these become so large so quickly that regardless of how well a company claims they manage a self learning AI system at some point it becomes impossible and impossible to find where the route of a potential problem began, they are just far too vast for even the largest team of developers to manage. So I would not trust an AI to be able to, as you say easily recognise subtle changes or idiosyncrasies in human behaviour or stick to any type of parameters that would try to ensure this. 

I suppose what I mean is that any computer system works on logic.

5+5=10, 20-4=16 but if it comes to 10+turnip=? What will it do?

I just told Co-pilot the joke and it did recognse  it as a joke and a very British one at that, but we had been talking about absurdist British humour yesterday and I think it just picked up on it.

Do you think so? So many computer programs have problems and biases that are quite subtle depending on who's training/programing them. Even things like facial recognition programs are less likely to be acurate for non white or South East Asian populations, we're unconciously building these biases in. In this case though I wonder what it says about the people who are giving these programs their learning material?

Do you see the AI diagnosing autism as learning on the job as it were? If so then what about the people it missed whilst gaining experience, I know this can happen with newly qualified humans too, but would the AI have the wit to ask a colegue and would it have the sort of professional supervision that many humans have to have?

I agree that computors are better at sorting through large amounts of data faster than humans can and I can see that for medical screening, of things like mammograms they're faster and just as or even more acurate than humans. But I think that is different to  how we experience the world and so much of autism is about our experiences in the world. A human for example could ask for an example of being humiliated at school and have an empathetic response, but how does a machine learn that response? I think a good example of this comes from when I used a joke whilst I was talking to AI and it took me seriously and came out with scads of serious stuff about this joke and wasn't even sure when I told it it was a joke comment and not to be taken seriously and this is with something that knows my conversational style. I can't imagine how a machine that didn't know my conversational style would even hope to pick up on the subtlties of human communication in a diagnostic situation.

Maybe as an experiement we could tell our AI's the same joke, not tell them we're telling them a joke, but just to see how it responds, we'd have to tell it the same joke, so heres mine.

Cuthbert was an inflatable boy, who went to an inflatable shool and one day the head master came up to him and said 'Cuthbert!, You've been found running in the school corridors with a drawaing pin and I want you to know that not only have you let me and the school down, but you've let yourself down too',

Yes you are more skeptical on these matters than I TheCatWoman.

Broadly speaking you ask how would the AI learn to understand differences - I would answer that question by saying that it would learn to.  I agree with the core rule "garbage, in garbage out" for the use of any system, computer or tool (hehe except that as is also said "one man's junk is another man's treasure").

Computers are in my opinion far better at handling vast amounts of data and complexity than human beings - yes they can be biased of course but that bias in my opinion is easier to resolve in them than in most humans

The childhood form you mention is interesting. I was sent a form, but had no one to complete it which they accepted and I did in my meeting mention things I remember. I was glad I didn't have a parent to answer that, as my last surviving parent remembered very little of my childhood and probably would have said no difficulties.