Over diagnosis of autism in children and young people?

It's nice to meet you. Her is the link for the article.

https://eprints.soton.ac.uk/450987/

I don't have a copy of the full text to hand. It includes some amazing maths and images of the brain. Very small sample but ripe for being expanded on in my opinion.

I really enjoyed reading your post. Many of the people you mention I am a big fan of. Also love the line

'Specific wirings provide society with specific functions'.

These genetic variants have been investigated in research settings using microarray techniques, which can process large amounts of genetic data. It is possible, once a useful number of autism linked genetic probes have been identified, that this approach could be used for clinical screening/diagnosis. It can even be used for epigenetic variation, where chemical modification of DNA controls when and where genes are expressed. At present researchers are only looking at autistic and allistic samples to detect differences that seem to be relevant.

NAS83686 said:

What has been found with remarkable accuracy is the way the brain communicates internally between regions which appears to have a very specific signature

This whole discussion is interesting and especially ^^ this. Do you have a link?

I was never diagnosed, we moved around too much, just assumed shy, introverted, creative and a bit too pragmatic. But then when I asked for help reading I never received it.  What followed in to my 20's was a series of never reaching 'milestones' - difficulty working out how to manage school and a full-time job, difficulty keeping a job and keeping friends. Being called a ghost and assumed I'd figure it out as I was highly intelligent. I was in the States and left to fend for myself. I ended up homeless for a bit. What was available to someone incredibly poor with unknown digestive issues were libraries and art galleries. But this is before the world was taken over by ruthless lighting and jet-engine level public loos. I buried my head in books and fell into creative technical work with a mentor who I felt I could relate with. Rare and lucky.

Over the last 20 years, I've learned about social constructs and contracts, economic and value-based trajectories including a sort of neoliberal dominance. Money is smoke and mirrors. Social signalling and tribal inclusions are a smoke and mirrors and a majority of people seem to actually want the phantasy. They become angry if you turn the lights on in the middle of a performance - to give an analogy to social constructs being a sort of 'theatre'.

Jung's massive body of work on Archetypes exposed a few strange intricacies similar to Lacan's suggestion that Autistics cannot seem to create defence mechanisms. Jung noted a type who didn't appear to sublimate. Freud liked the theatre and didn't like autistics, and the anti-psychiatry movement aimed at helping those overrun by society a little room to breathe out side of societies dysfunctions. Deleuze and Guattari blew everything apart exposing what I would call a great divide between Autistic-Analytic and the Neurotic-Paranoiac. These differences potentially reduce to a polarised primary function (let's assume those poles are a wide and giving as North and South, where does the needle flip or the water begin to spin the other way down the drain).

When Jung talks about The Type Problem in Aesthetics, with the Introverted Type being more sensitive (sensory-perception), inward, seeing the object having a life of it's own and perceiving seemingly invisible systems and the Extroverted inclinations toward the need for external behaviours, cold hard facts, the object being something to infuse life into, I believe he is touching on what is now termed NeuroDivergent vs NeuroTypical, with ADHD literally being a wildcard. But I do know many introverted individuals who have no problem with social cues other than they just don't like the covert hierarchal games.

From my point of view, there is a middle ground most can meet at but it takes dialectic discourse and the ability to check my bias, which unfortunately might be easier if not just reinforced for the Introvert/Divergent. I can see 3 key elements at play with Autistic individuals: Monotropism, a different Salience Network (sensing things as too real and everything-all-at-once) and a different use of language/semiotics. Above and around these, added functions or misfirings can be assessed. One thing which seems overlooked is the need for a brain to function in a particular manner which might hinder it's use in ways which most assume every brain should (executive functions for instance). We need to stop assuming the human is homogenised to begin with. However, nothing good comes from absolute isolation. Should we find a majority of composers dyslexic then there is substance. It's time to do away with "My" autism. Specific wirings provide society with specific functions. I do wish there was more neuro-imaging which could potentially express not just the ability to use the brain in different ways in order to conceive of the same issues, but also to force the medical industry to Stop prescribing autistics the wrong drugs for Actual Anxiety, as it is not a bit of theatrics with left-brain language reasoning.

But I agree the "Industry" needs a clean sweep. Society plays out very different than it did 50 years ago. 

Chesterton, Orwell, Erich Fromm, and so on all made calculations or future trajectories should society continue to value something which will cause a decline. It's stunning these have been packed away or that medical research is not adequately overseen by Philosophy, philosophy not adequately over seen by psychology, neither playing a role in proposals for Neuroscience... 

It's a difficult thing to balance. On the one hand we are diagnosing a disorder according to the diagnostic manuals and impairment has to exist in order to be able to diagnose.

However, I think the way our brains work is amazing. I have met an artist who was non verbal and learning disabled who displayed work in the Tate. Then there are people like Elon Musk and Greta Thunberg having a massive impact on the world. Personally, I can retain lots of information which has seen me elevated to being considered an expert in the past. Some of the comments on here show how remarkable people are.

There are people with ASD changing the world wherever I look. Why are so few in employment? 

I think society misses out when excluding people with ASD and the good we bring to the world needs more of a stage. We as a community can do this.

NAS83686 said:

and do this in a realistic but positive manner. I spend a lot of time talking about strengths and acceptance

This is really positive to hear. Rather than it being about deficits!

That's a very good summary. What I can't work out is how to incorporate this awareness into assessment? There are no tests which can be ordered as yet. 

Are there any questions you can think of with your experience which could help related to genetics.and the processes you describe? What would that look like to a lay person? 

I've always found it strange when I read of people "going for a diagnosis" when in actual fact there's no outcome yet because it's an assessment.

What I took from my ADOS assessment results wasn't actually anything that was written in my report because I kind of already knew that. It was more about how I approached the tasks. (The processing). This wasn't really discussed at feedback but I think autistic people approach the tasks in a certain way. Yet this isn't in any diagnostic criteria. I would like to know how an allistic person does on these tasks and if they have a different approach. I think there needs to be more discourse between allistic and autistic. We seem to be in an autistic echo chamber often on forums and when watching youtube advocates. I can't speak for any other social media though. But yes I mean observable behaviours is probably why those youngsters who "act up" are noticed more than the quiet ones.

There seem to be two main genetic types of variations linked to autism: to have a small number of large-scale genetic variants, or have an unusually large number of common smaller genetic variants. The genetic variants are connected to genes in neurological or neurodevelopmental pathways. The large-scale genetic variants, often sizeable deletions or duplications of DNA, often occur de novo (that is, not inherited from either parent) and are also often associated with intellectual disability. The autism linked to common genetic variants is usually the result of smaller DNA changes, such as point mutations, that are inherited, and found throughout the general population. So autism linked to the latter case, usually characterised by lower levels of intellectual disability and sometimes with academic excellence, is the result of a person having a higher than average incidence of these common autism-linked genetic variants. These are alleles or epigenetic variations, that are found throughout the general population. Any single individual could have a mixture of large-scale and small-scale genetic variants, of course.

You make a lot sense. I think in the absence of a safe and effective NHS service you have to look elsewhere. However, there is something called right to choose which isn't widely advertised. Basically you have the right to select a provider outside of your area as long as they hold a NHS contract somewhere. This remains free at the point of delivery.

I think it's good that there is more information online. I haven't experienced anyone faking it.in the last twenty years. Some people have convinced themselves through this information and then get upset if they don't have the condition in the opinion of the assessment. This can be really difficult for people.

In terms of observation the ADOS does this to an extent. It is very staged though so l imagine by observed you might mean in the person's natural environment?

We are both on the same page re. processing and this can be seen on a eeg scan. I think there are plenty of people studying us and people with ASD need a.way of leading more research.

We sound very similar characters. My brain feels like this.

You didn't misunderstand  I spend a lot of time providing psychoeducation regarding ASD and do this in a realistic but positive manner. I spend a lot of time talking about strengths and acceptance. The.side effect is this leaves me feeling quite positive about the way I present. Although, a quick analysis shows a lot of challenges and difficulties. 

Most of my social network is from abroad for the same reasons you mention. I think a lot of them think my ASD is what British people are like lol. 

Hello Martin, I think you raise a very relevant point. I find the geneticists at Bristol University very interesting and have attended many a lecture regarding ASD and genetics. Certain genes and processes have been implicated but nobody has explained to me yet definitively how ASD and genetics are linked in a meaningful way.  I am not saying this information isn't out there. I just haven't heard it and it's not my area.

No current test we have captures the condition 100 per cent. So there must be variations which could be different sub conditions, which is your point I think.

I find the ideas generated by the connectome and the way the brain interacts compelling as this can be identified with great accuracy in people with ASD. But what about the 8 per cent it doesn't pick up? This I think fits with the point you are making.

Thank you for explaining this.

I had been wondering how you navigate the forum.

NAS83686 said:

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.

NAS83686

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.