Over diagnosis of autism in children and young people?

Hello everyone, this is my first post. I am hoping for your advice and opinions in relation to my current role.

For background I am a 40 something year old man, diagnosed with autism in childhood in the 1980s and re-diagnosed in my late 30s when a NHS neurodevelopmental clinic I worked for didn't believe I had the condition. 

I have worked in health since my mid teens and have always supported and advocated for neurodivergent people. I have published on the subject and spoken nationally for a range of organisations including the Royal College of Nursing (RCN).

Prior to working in an ASD assesment service I always strongly advocated for assessment and identification.

However, I now feel deeply concerned at what I have discovered through becoming more familiar with the assessment process, particularly in the private and independent sector.

I have been completing ADIRs. This is one half of the 'gold standard' used for ASD assessment. This is the parent interview. What I have discovered is it isn't fit for purpose and everyone who completes this assessment knows this.

First of all the language is dreadful and is about as far away from neuro affirmative as you can find. It's a test designed by neurotypicals to administer to other neurotypicals to develop a neurotypical view of an autistic person. What's worse is it doesn't assess the condition properly.

The ADIR works really hard to identify parts of the condition which are no longer in the diagnostic criteria and misses out other symptoms. 

We were trained by an American and their rate of diagnosis is double our national average. We are then being trained to be even more liberal with the questions under the guise of complex and subtle and I imagine our diagnosis rate has to be higher than the Americans. Many of the referrals wouldn't get into the NHS clinics I previously worked in and as people are developing their own questions I often hear things which are not ASD being framed as ASD.

The result of all this is I believe we are having children and young people diagnosed with ASD who probably wouldn't receive this diagnosis within more robust services. There is a gravy train of private services each charging more than 2k a time per diagnosis and it appears there is an incentive to give the diagnosis. Not financial, but in terms of being a business wanting positive reviews and to follow the request of their customers. What is the long term effects of this?

There must be a better way of doing this? I don't know the answer but think neuroimaging has a role. A computer scientist in Southampton is able to predict ASD within a 90 something percent accuracy through brain imaging whilst young people play specific computer games. Whilst I think it would be a shame to remove the story and talking and this needs to be incorporated in my opinion. It's a little way from being able to be implemented widely but the idea is a cap, piece of software and laptop will be all that is required.

The current standpoint of policy and guidance makers to rule out anything but their outdated 'gold standards' and the domination of neurotypicals 'doing' services to people on the spectrum needs to stop in my opinion.

I think the experts by experience consulted are lip service and would like to see more people on the spectrum with clinical experience leading within the field. I don't know how we do this. I am part of the National Neurodiverse Nurses Network but we have quite a wide remit and I am not sure this is the way forward in regards to this issue.

Sorry for this massive monologue. Like many of you I see things in a.lot of detail.

  • The theory of it being multiple conditions in relation to neurology is based on an incorrect reductionist approach in looking for structural abnormalities in the brain in specific regions such as the cerebellum. There hasn't been one region found to be universally implicated in ASD. Giving rise to the multiple conditions theory.

    BTW I am a retired molecular biologist. If, as seems likely, there are a variety of genetic causes of autism, linked to different genes and different neurodevelopmental and metabolic pathways, then treating it as one condition may be counter-productive. 

  • I teach adults whose first language is not English.  So it's kind of fitting because communication with them has a purpose and any "differences" can be put down to cultural or linguistic. I think I misunderstood a bit of your information initially when you said ASD barely affects you...this is why I thought you had got yourself a good set up etc but it still sounds like it's challenging. I struggle in more unstructured social situations but no one would know this because my brain goes 500mph to compensate. 

  • Nice to meet you Out of Step. Absolutely, like you I get exhausted.  I am currently home based, which is a bit better.

    As I work as an ASD specialist nurse I spend most of my time with neurodivergent people. I also provide peer support to other nurses on the spectrum. Nurses have a very hard time as there is an expectation on how we should be which is hard to maintain and bullying is rife. I trained to be a nurse prescriber as Psychiatrists who traditionally prescribe are allowed to be a little less fluffy. 

    Agreed very taxing on the brain. What do you do our of interest?

  • People have said the mild statement or 'I can't tell' thing to me as well. I think all autistic people experience this. It seems to be an odd thing many people do to try to make us feel better. It goes alongside the classic 'well, we are all on the spectrum a bit aren't we' statement.

    In terms of what you are describing are you aware of the double empathy idea? Basically people like Simon Baron Cohen speak about people with ASD lacking theory of mind i.e. not being able to place ourselves in others shoes. The double empathy problem points out that when you ask neurotypicals to place themselves in a person with autism shoes they are very bad at it as well,.if not worse.

    I am on both sides of the fence. It sounds like you are as well. I receive help for ASD and I work as an ASD assessor.as a senior nurse specialist. From my perspective services are medical model focussed, designed by neurotypicals to do services to people with ASD and not deliver services with people with ASD. 

    I have worked in other areas where people with the condition I am assessing are much more closely involved. When I worked in drug and alcohol services at the start we didn't have any kind of peer or service user input. By the end we had people working for us and volunteering who had been through the service successfully. We had the best outcomes in the country shortly.after implementing this.

    I feel very done to as an autistic person and don't know how we do this but want this to change.

  • Does engaging with people all the time not tire you out? I'm wondering if you have many neurodivergent people in your life and that you have adapted your environment to what works best for you. I too enjoy being around people and am well liked and respected.  But it's hard work on the old brain!

  • Ah interesting - I assumed that by neuroimaging you meant something like an MRI scan, of which I have had many and have found them increasingly uncomfortable over the years. It's great to no I was wrong about what you had in mind and what's being explored!

    It's interesting what you say about other people perceiving your autism differently from how you experience it. Maybe while we can hopefully recognise that we know our feelings and understand our own experiences best, others can view us objectively in ways we never can - and so both perspectives have weight.

    I tend to have the opposite experience to you, where most people I tell about being Autistic either tell me it 'must be very mild' or that I 'don't seem very Autistic,' or suggest all my traits are probably down to blindness. A couple of Autistic people have known before I've said anything about it though, which is always very validating. As you say, we definitely need more Autistic assessors 

  • The NHS provision in my area has been closed down due to being put into special measures more than once. People go private because they want to be seen more quickly. Would you go for private cancer screening because you wanted to be told you had cancer? I know these two are COMPLETELY different things but I'm being blunt to make a point.

    Of course it isn't a mental disorder or disease but I wasn't separated from others yer I still have a diagnosis.

    I wonder if some of the uptake in diagnoses is due to to people sharing information online. There's the official criteria for autism diagnosis and then there's other factors which are not accounted for in diagnostic criteria but they seem to be shared experiences within the autistic community. Some people may put things down to "being autistic" when it isn't in fact the case. But others see this in themselves and start wondering.  However I think this sharing of information is massively helpful because the official guidance / criteria is made by neurotypical people for neurodivergent people.

    I think there needs to be change within the criteria which is based on observable behaviours. I actually see it as internal because it's about processing. I think there are many differences within autism but also similarities with other neurodivergent conditions. It's a tricky one but I think autistic people need to be included more in reseach both participating and carrying out. I hope I've made sense my brain is fried right now!

  • Sphynx it's nice to meet you. That's some brilliant points you raise and I feel grateful to be meeting so many interesting people,.which usually is so difficult.

    It's nice to hear some validation on the assessment tools.

    Neuro imaging takes about 30 minutes, not the many hours it currently takes to asses for ASD so is less intrusive. It will miss 8 per cent of people. Th current tools can over include people.

    Neuroimaging can be completed in a standard interview room. You can get a cap which lines up all the electrodes so doesn't need to be applied by someone qualified in neuro imaging. These caps plug into a box which can go into a standard laptop. There are tasks available for people who are blind or deaf. 

    I get the imposter thing as well. My whole life is engaging with others, I like people and I am generally liked. I am clumsy as anything though socially and constantly trying to work out why I have upset people. 

    However, when I tell people I am barely effected by ASD they look at the floor if they know about ASD. When my diagnosis was repeated in my late thirties they told me it was 'barn door autism' a fairly unfortunate term used widely by people who do assessments. 

    It's a great question.as well. How do we know if we are wrongly diagnosed? It's a life long diagnosis which is a one off assessment (or should be). I spend a lot of time thinking I don't have ASD when deep down I know I do and learning the flaws of the assesment process has fed into this.

  • It's real! I do my best not to use sarcasm in a text-based medium as it can go over my head too

  • a braile display! 
    that sounds pretty cool and advanced.... is that real or sarcasm that went over my head? if its real then tech is getting more amazing by the decade.

  • I access the forum either through my phone (which reads what's on the screen) or via a braille display connected to my phone (which displays what's on the screen in braille so I can read it with my fingers) 

  • Catlover, nice to meet you.

    I have lived with ASD for 35 years, published on the subject and have worked in the field for many years.

    I can tell you with confidence that there are people being diagnosed with ASD who wouldn't receive that diagnosis in a clinically robust setting.

    I also agree that not all NHS services get it right. I make eye contact, work as a mental health nurse fulltime and did get the diagnosis in the NHS so I know there is exceptions. However, my own clinic didn't believe me showing the variation.

    In terms of separate diagnosis comorbidity is the norm when it comes to neurodevelopmental disorders. I agree that it can become unacceptable when people are for instance diagnosed with depression and anxiety, prescribed antidepressants and told it's not a neurodevelopmental disorder. This does happen a lot with adults. I know tha many are helped by very good private clinicians in these circumstances.

  • When I was 6, there was a boy who lived over the road who went to my school. He was classed as disabled, and at that age, I never heard anyone say what was wrong with him. Looking back, he was clearly autistic. He had meltdowns where he lashed out, he screamed and shouted, never gave eye contact, didn’t ever mix with other children and used to be obsessed with special toys. He barely spoke. I was always fearful of him, becuase I always heard the racket from over the road. And when I was invited to a birthday party of his, I didn’t want to go. (I didn’t like partied either). My mum said not many people want to go, so I should so he doesn’t get upset.  Anyway, I ended up being with him a lot of the time, and sitting on the seesaw with him. We didn’t speak, but we just got along. I went home and told my mum that he was fine, didn’t shout, and was pleasant to play with. Now I know why! 
    Thing is, I was very quiet. Called shy. I blended in, and hid well in with my peers, despite being highly stressed internally daily. No one would have ever guessed I was the same as that little boy, and I’m 50 soon.

  • you might aswel do it if your being paid... after all if you dont do it someone else will anyway. you may aswell take the payment as its gonna be done anyway. it cannot be stopped that kinda thing.

    im not sure if it does any harm anyway, sure it may end up ignoring legit people with autism and allowing rhem to go undiagnosed while handing out diagnosis of it to people with many friends and social circles who havent lived through anything like it, but it doesnt matter anyway as its all the same to a person who has been left behind in society anyway, nothing changes, its same as what we can expect from society. in the end we realise lables and diagnosis doesnt matter, the only thing that matters is each individual life experience and what the individual has gone through.

  • and I'm also blind

    your blind? but you can see the text on the forum right?

  • Caelus I think you are saying what a lot of people have found to be the case. There are obviously a lot of very good private clinics and practitioners  out there. But as I have found some are not.

    Like you say there can be that pressure to diagnose everybody which is what I am finding.  I am being asked to do this and refusing.

    I feel.like I should do something about this but I am unsure what. I do have a voice but working out through discussion in the community what to do.

  • was watching a psychiatrist on youtube speak about how these autism type things come to be... he gave a valid enough argument that if you seperate  kid in their development phase from other kids they will always be left behind and never develope the social skills to fit in, and then that is where you get autism type symptoms... i think he was arguing it isnt a disease or a mental disorder but rather something of a developmental thing that is primarily the carer/guardians fault for not allowing their kid to socialise and grow in society, and once you hold your kid back from that they will always be weird, never fit in and never make it in society.


  • I'm not sure how much insight I have to offer with this, but here are a few initial thoughts. 

    For context, I'm in my early twenties, studied an arts subject and hope to train as a therapist. I have a formal recognition of Autism, and I'm also blind. Normally i would say I'm Autistic, but given the content of your post it seems important to phrase it that way.

    I absolutely agree with you that the language of the assessment is awful - very deficits-based, pathologised, and as you say arising from a non-Autistic view of what Autism is.

     

    I have at times wondered why neuro-imaging doesn't form part of the assessment, but as a blind person the approach you describe with computer games wouldn't be accessible for me. I'm sure there would be other ways of including this, but could this contribute to making an already-pathologised process even more clinical and intrusive? I don't know what I think about this, would be curious to hear others' thoughts.

    Finally, a more general and personal point: I have experienced a not insignificant degree of imposter syndrome around my Autistic identity, and I know I'm not alone in this. How would I know if I was one of those who has been wrongly identified, as you describe?

    Thanks in advance for your thoughts

  • I never heard of someone being diagnosed with ASD if they didn’t have it. However, being diagnosed with separate or similar conditions is common practise, and this is unacceptable. 

    Suggesting that private specialists give a diagnosis for ‘fun’ is unnecessary. Many people have benefited from a private diagnosis, when they were laughed out of their NHS assessments, because they coped, worked and gave eye contact! 

  • Its lovely to talk about this stuff.

    I agree with what you are saying in relation to less obvious ASD not being diagnosed until the 1990s.

    In relation to ASD and neuro.imaging this research does exist as I mention in my original post. There is a reluctance to embrace it in the field because the people trained to administer ASD assessment are not trained beyond basic neuro science and don't understand it.

    For instance neurofeedback which has a fifty year history of use and data is a don't use under any circumstances approach according to NICE. There is a transcript available online where NICE debate the issue with a leading expert Stuart Black and refuse to look at any of the evidence.

    If you Google Koushik Manharatna (spelling possibly wrong) eeg, ASD and Southampton University his research is available. He's not the only person to have done this work. He's one of only two people I have been involved with professionally in relation to this work.

    The theory of it being multiple conditions in relation to neurology is based on an incorrect reductionist approach in looking for structural abnormalities in the brain in specific regions such as the cerebellum. There hasn't been one region found to be universally implicated in ASD. Giving rise to the multiple conditions theory.

    What has been found with remarkable accuracy is the way the brain communicates internally between regions which appears to have a very specific signature. Koushik has translated brain imaging information to complex mathematical algorithms and translated this into computer programmes. If we complete six tasks ona game whilst wired this  predicts.with 90 odd percent accuracy if we have ASD. Lots of these tests exist and are fairly easy to administer.

    The issue for me is we are stuck with this 'gold standard'' approach which for me has major flaws.

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