BBC In Depth: the ongoing battle to define autism

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 have tried to keep up with this thread as much as I can but it's now very long so apologies if im repeating what someone else has said.

It's worth considering the medical model we currently have quite often treats symptoms not underlying causes. Treatment is often about alleviating symptoms not getting to the root of the problem. Then other symptoms appear...treatment to alleviate and so on . Then one becomes a set of individual symptoms and diagnoses. What gets lost in all this is the individual as a person and how all their parts make a whole.

You can't cure autism, but how much of our difficulties are affected by environment... inside and outside our bodies? Harmful chemicals, pollution, microplastics, UPFs, etc etc all ubiquitous in our society. What else? A pace of life which is getting faster, louder, brighter - all these things moving away from our natural home. This affects everyone but in particular those who are more sensitive. Im not saying these things cause autism, but they dont do anything to help.

Autists have a (more/differently?) sensitive nervous system. We communicate and process the world differently to the predominant neurotype.

This leads to a perpetual load on our bodies in all sorts of ways. But I think the biggest one is chronic stress. This will lead to physical disease and illness. Cardiovascular....gut health....the list goes on. Show me an autistic person who doesn't have any additional health problems which are not caused by stress. Added to that are difficulties in seeking help due to difficulties with processing and communication.

Our mental health and physical health are inextricably linked. We are inextricably linked to our environment - we are part of it but this idea is lost in the modern world.

What's my point here? Firstly, a diagnosis or recognition helps us to understand ourselves but on its own doesn't help on a practical level going forward. Our environment needs to change. I think I read someone on the forum say their strategy is to look after themselves. I think this is wise because our modern world is not built for humans let alone certain types. Recognition of being neurodivergent helps us understand what we are up against and why. Then, hopefully, it's up to the individual to consider "how".
Secondly, not going down the phrase of "snowflake" but treating people as individual human beings with compassion and a sense of - this person has problems how can we support them to get to a place of good health? And, how can this person be supported to help themselves?

I dont know if im missing the point in this thread but I really wanted to add my own perception. 

• Checking the Machine's Manual: Like many people in the UK, my own diagnosis was assessed using the American DSM-5 framework, but the NHS also relies on the WHO (ICD-11) framework for its wider health records. A major problem with an AI trained purely on the DSM is that it treats diagnosis like a rigid, binary checklist—if someone scores one point less than the cut-off, a machine simply says 'no'. A machine cannot understand what the WHO framework highlights: that a person might pass a rigid checklist but still experience severe hidden struggles because their environment isn't accommodating.
• Spotting Overlapping Conditions: An AI looking at pure data points can easily mistake dyslexic processing delays or ADHD traits for an autistic communication difference. A human clinician brings the holistic nuance needed to unpick how these different traits interact in real life.
• Freeing up Humans for 'People Work': Right now, a massive chunk of an assessment is just administrative paperwork, scoring questionnaires, and transcribing histories. If AI acts as the calculator to handle that data entry, it frees up clinicians from behind their desks. In my view, it lets human experts spend their limited time actually being people with the people.
• It Pays for Itself: Using AI as a screening assistant to sort initial data could drastically cut the time and cost per assessment. I would love to see those saved resources funneled directly into cutting down brutal waiting lists and funding actual, real-world support services.

I'm not so sure about AI being trained to test for Autism, it depends on what data it's fed to enable it to make a diagnosis and I think that could become very biased very easily.

Will it say no if you score one point less than for a "positive" mark?

How will it take into account other things like dyslexia?

A human could say someones borderline or has some strong suggestive features of autism or whatever gobbledygook they use and make provision accordingly, but will AI have that level of discernment?

Will different AI's have differnt criteria, it's confusing enough now with things like the DSM being differently interpreted in the US than in Britain?

I think we need more actual people, humans doing this stuff, not turning it over to machines and when the AI spits out its results will people still be waiting for anything to actually be done? Will the AI deliver help accessing services, where they exist and sorting out the post code lottery?

sorry it took me so long get to that point B 

The NHS isn’t fit for purpose anymore as clinical specialities in autism and ADHD, as well as in other areas such as maternity, have been cut. If RTC is so unregulated as is reported with assessments varying in standard and cost, maybe it would make more economic sense to train up more NHS specialists in psychiatry, psychology, speech therapy etc. I must be missing something because if it was that simple, no department would have a shortage of specialists. 

I’m wondering if now would be the right time to launch a big campaign for autism diagnostic and support services. Maybe pester Andy Burnham. BBC Newsnight has been featuring different campaigns on an ongoing basis, e.g.  Epstein victims, Military Veterans affected by Nuclear Testing. Some of us have already written to MPs, but in an attempt to exert more pressure, a campaign needs a higher profile with visible accounts on TV and social media by the people affected. An issue is, who can speak for us in such a visible way? 

Thank you B 

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

Phased said:

Seeing that official watchdog report made me realize that the data is on our side. The crisis isn't because too many of us are seeking answers; it’s because the system itself is failing to support us properly. I just wanted to share this perspective because finding that Ombudsman report really helped me counter the anxiety these recent headlines have been causing.

Thank you.

I agree that cost deeply linked to this.

Diagnosing is a good start to resolving an issue and using tech support to do so makes sense to me - as it does with developing and implementing a solution.

I hope that the savings made by integrating neurodivergence and overcoming the double empathy problems will eventually mean the financial and suffering cost will eventually be drastically reduced.

Until then ironically since autistic people are reputed to have problems with change at present it seems to me that neurotypical society is struggling to change most.

This puts me in mind of a joke:  "Q. how many neurodivergent people does it take to change a lightbulb?    A. Just the one but the lightbulb has got to want to change."

I believe it's all about cost. How about AI being trained to diagnose autism?

(Just don't get Uta Frith to train it - ha ha! )

1. Focusing on my legal protections: I've realized how vital it is for me to understand my statutory rights under the Equality Act before a workplace crisis hits. Learning how to use established frameworks—like the Acas neurodivergent workers guidance or the NAS resources on Reasonable adjustments—is the only way I can safely handle difficult workplace conversations.
2. Aggressively managing my own energy: I’ve had to accept that chronic exhaustion is caused by a poor working environment, not a personal failure. I am having to learn to recognise my early warning signs and apply the NAS tools on Autistic fatigue and energy accounting to protect my health, especially when an employer fails to provide enough resources.
3. Leaning on independent peer spaces: I know I cannot navigate these professional pressures in isolation. Finding validation in peer groups and spaces exactly like this forum is what keeps me grounded when external headlines or workplace environments feel confusing.

Roy said:

Also whilst I’m ‘standing on my soap box’, the only having ‘Right to Choose’ in England needs to stop, it should cover the whole of the UK.

I do agree. In my area, NHS adult ADHD assessments have stopped because there aren’t qualified clinicians.