Over diagnosis of autism in children and young people?

Thank you Deepthought and Martin for those exceptionally helpful replies.

Well I am glad to have been of some assistance. 

I think that, from taking the link, mine was probably done under the 'DISCO' framework.

Well in my case I don't actually know ~ but much like yourself:

I've emailed the company who did mine to ask what 'framework' they used.

I telephoned the neurology department and spoke to the secretary of the diagnostician who assessed and diagnosed me, and she is going to let me know when she finds out from the doctor once he returns from leave.

This is an interesting one. I disclosed my late in life diagnosis some months ago to someone I know who's a primary school teacher. During the course of the conversation, she mentioned that in her school 11% or children have an ASD diagnosis. That struck me as shockingly high and well outside the 1-3% of society that is supposed to be autistic. 

However, a couple of factors that could account: this person herself thought that there was over-diagnosis for those childern. The area is a more socio-economically deprived one, and the legacy of certain issues has made addiction etc. cause a higher number of child conditions such as foetal alocohol syndrome among others to be more common. I think that the pathologised way of thinking about autism can then creep in and a co-morbidity is assumed, or even pushed for by parents wanting/needing support including financial support. I am unsure if you took a primary school one of the 'posher' parts of the area and took the ASD numbers there if a much lower number would be on record, and thus a mean average falls more in the middle. 

Let's assume so for a moment. What would that suggest? That maybe 4-5% is the accurate stat for the youngest generation. And so a steady increase in the shifting of ratios is taking effect. At the same rate, will a tipping point towards a more ASD-accommodating society be reached in... a few generations? A dozen? Because by then you have maybe a fifth of society with ASD. And, interestingly, hitting that point as  technological advancement gets ever more capable of levelling the playing field? Not sure, but the signs are there. 

That's really interesting.

Thanks for sharing.

I note some of the questions are aimed at another person - did you have input from anyone?

I didn't.

I've emailed the company who did mine to ask what 'framework' they used.

The following was the basis of my assessment, as my assessor was a psychiatrist, I imagine that was why it was used. It is a product of the Royal Society of Psychiatrists.

autismwales.org/.../RC-Psych_Diagnostic-Interview-Guide-for-the-Assessment-of-Adults-with-ASD.pdf

Thank you Deepthought and Martin for those exceptionally helpful replies.

I think that, from taking the link, mine was probably done under the 'DISCO' framework.

It seems like there are a variety of approaches, but all of them use the 'criteria' of traits that are laid down in the diagnostic 'manuals, ICD-10 and/or DSM-5.  The NHS approach looks as though it has been incompletely adapted from that used for children, with a lot of emphasis on observation. What this produces, as a side effect, is some misinformed or 'behind the times' clinicians making simplistic observations that they then use to refuse an autism diagnosis. Ones I have heard of from the 'horses mouth' include: 'makes eye-contact', 'uses gestures appropriately' and 'speaks fluently'. As if these definitively preclude a person being autistic! I think that a history given by an adult, having had a lifetime's experience of their own traits, limitations and problems, is a more accurate gauge of autism than a few hours of observation by anyone, however well qualified.

Of course observation is of prime importance in diagnosing younger children, but it should be regarded as being of increasingly less importance in gradations of age from older child, through adolescent, to adult.

Are there therefore different types of assessment and are they all as valid as each other?

Here is the short NAS summary of the different types of assessment:

There are a number of tools which are used to diagnose individuals who might be autistic. These include the DISCO (Diagnostic Interview for Social and Communication Disorders); the ADOS (Autism Diagnostic Observation Schedule); the ADI-R (Autism Diagnostic Interview – Revised) and 3Di (Developmental, Dimensional and Diagnostic Interview).

https://www.autism.org.uk/advice-and-guidance/topics/diagnosis/diagnostic-tools

And the link by way of the previous link for the longer NAS summaries:

https://www.autism.org.uk/advice-and-guidance/topics/diagnosis/diagnostic-tools/all-audiences

Which oddly enough does not include the summary of the Developmental, Dimensional and Diagnostic Interview (3Di) ~ but a link to one summary is:

http://ixdx.org/3di-index.html

As for which assessment is considered the most valid or whether they are equally as good ~ all I know for sure is the Lorna Wing Centre for Autism uses the DISCO framework to assess pre-adolescents, adolescents and adults ~ being that I know a few people who have been assessed there, and one who wants to be assessed there.

I had just assumed that they are all just different versions of the same sort of thing ~ as involving the American Diagnostic Statistics Manual and or the International Classification of Diseases manual to different extents, so it could involve a post-code-lottery state of affairs, quite possibly?

Thanks.

I just looked 'ICD-10' up and gave up.

I think it's the standard?

So, taking into account that the assessment of others has been different from mine re the story telling about objects/books etc, am I right in thinking that the actual assessments themselves can include a variety of methods and forms and a variety of lengths (besides a variety of number of clinicians)?

The Nice guidelines state that the minimum for a valid adult autism diagnosis is the opinion of a single suitably qualified clinician.

"Diagnostic assessment, which in the UK uses ICD-10, is often within a multi-disciplinary team but at a minimum is by a qualified clinician, usually a clinical psychologist, psychiatrist or neurologist." From the document: Autism Recognition, referral, diagnosis and management of adults on the autism spectrum, National Clinical Guideline Number 142, p. 25.

Most NHS adult autism assessment is undertaken by teams of clinicians and the testing and interviewing is over a relatively long time. Whether this is necessary for adults, or is the major factor in the perniciously long waiting times for assessment, is moot.

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.

What is the 'gold standard' considered generally then?

You talk here about children and young people, but surely this applies to all the population of any age?

NAS83686 said:

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 was diagnosed within the NHS (at 60) but the work was 'farmed' out to a company called 'Solutions4Diagnostics'.

There was no input from parents who are both deceased although I have a good memory of my young childhood.

These are the forms I was asked to complete prior to my verbal assessment:

The assessment consisted of:

RAADS (RITVO Autism Asperger Diagnostic Scale - Revised)

Autism Spectrum Rating Scale

Mental State Examination

Beck Anxiety Inventory

Beck Depression Inventory

Developmental History

I then had 2 one hour conversations online with Harley Street based Consultant psychiatrists.

Am I able to have faith that my diagnosis is likely to be correct?

I am a little confused by this thread and it is very dense with words, which I find rather difficult to follow.

I have also read on this forum about a type of assessment where people are asked to give a story about an object or a book and I didn't have that included in my assessment.

Are there therefore different types of assessment and are they all as valid as each other?

Anyone with any knowledge here please advise. 

Thanks.

The official NICE guidelines for adult autism diagnosis make absolutely no mention of how an assessment is funded. The only recognised prerequisite for a valid diagnosis is the appropriate qualification and clinical right to practise of the clinician or clinicians undertaking the assessment.

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 !

out_of_step 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.