Over diagnosis of autism in children and young people?

NAS83686 said:

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. 

NAS83686 said:

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.

Because Autism is a spectrum I don't think either of these is going to be a single solution, there are people with ASC who for other reasons just don't do as well at the same games as other people with ASC because the diagnosis purpose is to look for ASC in isolation, not ASC with ADHD or ASC with OCD, or all three co-occuring in the same person at once.
Also as a natural neuro variance autism should really not be viewed as under or over "diagnosed" the language applied to autism and autistic people needs to stop treating us as some disease. You (the royal you) can discover I am autistic but not diagnose it, it is not in of itself something that causes me a problem and it doesn't need to be cured. Ableism however definitely causes me a problem and needs to be cured in our society. Especially because Autism in of itself cannot be the cause of things like learning dificulties or intellectual disabilities on it's own because if it did there would be no observable spectrum where autism can be present without co-occuring conditions.
I would like to propose that it would be more acccurate and more ethical to run a variety of multiple tests looking for an overall overlap of key criteria areas combined with, and giving great importance to whether the person themself recognises and self indentifies with the critera.

I tend to agree with you, Catlover. When I asked for an assessment referral at my previous GP surgery- after 30-ish years of sensory issues and social struggles, no less- I was told that I was making my concerns up because "autism is trendy online now". I left the appointment in tears and never went back, and struggled on for another five years having meltdowns and being constantly exhausted by the demands of being a 'functional' adult before getting brave enough to try again with a private provider. I'm still too frightened to ask via the NHS even with a new GP surgery. I really don't think it's fair of people to dismiss everything except NHS diagnosis when the NHS pathway is so tricky to navigate for so many people.

This is reflected in the kieran rose video on masking and burnout. The fact we are modifying our communication to neurotypical standards can contribute to burnout I think, because so much energy is expended. And this extra work isn't recognised by anyone and for some can have very little or no reward. 

It's this idea of processing which is getting me moved away from a behavioural model of deficits. Altho I have never seen myself as deficient,  just different.  But that in itself can massively affect mental health.

You are definitely "my kinda people" Triker.  I was also surprised by my poor score on the eye emotion test thingy.  I'm told that I am very empathetic and also feel that this is a fair assessment of me  too - but I don't often project "normal" responses and displays that demonstrate to NT's that I "understand" how their situation is.  Sometimes, this can be a blessing for them (because I'm more original, insightful and useful to them)......but more often, I just confuse and scare people (because they can see that I "know" but find my resultant behaviour as odd, weird, callous, overly intense or inappropriately emotional.)

In terms of seeking a formal diagnosis for my autism - the same principles are likely to come into play.  Either I will inevitably obfuscate my NTness or obfuscate my autistic self.....or more likely, just confuse the hell out of myself and anyone trying to assess me.

Although this sounds pretty arrogant and self-deterministic, I think a true diagnosis for autism can only be established by prolonged and regimented self awareness and enlightenment - this can manifest either with, or without, a 3rd party assessment.

Never a dull moment !

Unknown said:

It was more about how I approached the tasks. (The processing).

This has been absolutely instrumental to understanding (and believing) that I am what, and how, I am.

It was fascinating to realise that I "do what I do" really fast and effectively......but because it is "different" to how everyone else does it, the bulk of my time and energy is then spent translating my work into an "acceptable" NT comprehensible format.

My "process" is SO different - but I was conditioned into presenting the outcome in a way that would be deemed SO normal (albeit very thorough indeed.)

Thanks for raising this point out_of_step.

Utter nonsense.

I completely agree and I think it's a crying shame that there are so many people with so much unreached potential (not just autistic people) because there's only a limited acceptable way to do things. There would be more people in employment if environments were more suitable and flexible.  If more autistic people were in employment it would offer a more diverse way of for example, problem solving. And surely that's a good thing for employers and business? When people feel they are making a contribution I'm sure this would have a positive impact on life and society. It's not just autism this applies to but a whole myriad of "conditions", illnesses and disabilities.

NAS83686 said:

people with ASD lacking theory of mind i.e. not being able to place ourselves in others shoes

I do wonder what kind of empathy is meant, definitions seem to differ, and how does it differ from sympathy? I can imagine what it might be like for another person, but it seems obvious that is going to depend on various things. I read fiction, that describes what it is like to be someone else, i think I understand what I am reading! But do I experience what I think of as empathy in the same way as other people?

To be in another person's shoes - being rather literal minded (but understand the concept of metaphor!) it makes me think, if the shoes fit well my experience of wearing those shoes might be similar to the original wearer. But if the shoes are too big, I would be shuffling around, they would rub and might trip me; if they were too small I could not wear them at all! But in a way, this still makes a good analogy.

I would have natural, immediate, visceral empathy for someone with arthritis, as I suffer from that. I would feel for someone who had escaped from a war - that seems to me like the too big shoes, the experience would be beyond anything I have experienced, but I have read about such things and can imagine it would be horrible, and feel sympathy for the person. I don't know if this counts as empathy, I would call it that, but I wonder if we all mean the same thing by the word.

I could not feel for a person who had chosen to do something I cannot understand why they would choose that. I might sympathise with their reasons for feeling desperate, but for example getting very drunk on a regular basis. I got drunk a few times at uni and quickly found my limits so I could stop before being sick because I dislike being sick. So I can't understand why someone would choose to repeat that. Even more so I cannot nor do I want to understand why someone would deliberately be cruel and hurt someone and enjoy their pain, that is beyond me.

For context, I am 50, female, and self-diagnosed autistic and ADHD, but have been diagnosed with stress/anxiety as well as being physically disabled. I have not felt the need for a formal diagnosis as I cannot work due to the things i am already diagnosed with, so I have very few situations for which accommodations are needed, and they would probably be covered by the things I am diagnosed for, so I think it better I don't clog up an already overloaded system!

I would be interested to try your brain imaging game thing. I have done online tests for autism - the one which actually shocked me was the eye emotion test, I scored so low on that and I had no idea there was this whole thing where people can tell so much emotion just from looking at eyes! I could only get the few really basic ones. I am relatively sociable and thought i was OK at communicating, though there are things i struggle with and I think there are times when I fail without understanding why. And I have always been hypersensitive, though I know that does not prove autism on its own. I also have major problems with executive function.

Thanks for explaining. 

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.