Over diagnosis of autism in children and young people?

There's a lot to consider in your thoughtful post.

Firstly I am glad there are people such as yourself out there and keen to get it right.  I met with one clinical psychologist who told me she sees a lot of people wanting second opinion because the initial diagnosis was badly done and the patient feels it is wrong - both ways; people who are clearly autistic being missed and others who have another problem to which the diagnosis has been carelessly applied.  It doesn't help anyone to get this wrong.

I am sorry to hear that the service you worked for didn't believe your first diagnosis.  That must have been stressful for you and it's worrying that could even happen in a service that is supposed to know.

Part of the problem here is that the waiting lists are two long.  If NHS practitioners were always adequately trained and accessible at the point of need there would be no scope in the market for private practices to make money and reputation by over diagnosing.  We've got to address the NHS provision issue.  Some one here yesterday reported a wait time of five years, people cannot go that long without their truth, whatever that truth may be.

And indeed, for now all we have are neuropsychological assessments, but we are learning more about brain structure - maybe that will be the way forward in a decade or two's time.

I agree.  Well done.  You are the first I have seen to draw attention to the ‘gravy train’.  
I hope your message is brought to the widest public possible.

Autism diagnosis is very important when properly used.

When it is not needed Autism diagnosis can be damaging and demoralising.

Of course, if the NHS in general and CAMHS, in particular, were properly organised and funded there would not be a market for private diagnoses. The CAMHS service has been a disaster area for decades. Recent changes in DSM have widened the definition of ASC, but like all these changes there was professional consultation and supposedly a consensus was reached. However, ASC, ADHD and other forms of neurodivergence are still controversial diagnoses in some places.

My view is that there is probably a greater awareness and recognition of what is sometimes referred to as " high functioning" ASC. That and the fact that it is now possible to diagnose comorbidities, e.g. ASC and ADHD.

When I look back at my education, in the days when we still had grammar schools, a lot of my friends were "geeky" or "weird" in some way ... I certainly was. With hindsight, I can see that many of my peers were showing signs of neurodivergence, it was just that nobody looked for it.  (And the diagnostic criteria were vastly different in any case.)

I struggle with "experts by experience " -  if I break my leg, does that make me an expert on orthopaedics? We need to listen to, and respect, the views of patients and service users ... but "experts" ? I think not. That said, there are probably many social workers and clinicians who are neurodivergent, and who have both professional knowledge and lived experience, and can legitimately claim some expertise. As a social work educator, I know that I can supplement my factual knowledge with my own experience ... but I also need to remember that for all of us, our experience of neurodivergence is very personal. Person-centred therapy regards the client as the expert in their own problem, and as part of the solution, and in that sense, I will go along with the expert by experience. But I am NOT an "expert" on >your< autism, or anyone else's. At best I might be a bit more empathetic. But then I think that those of us who have "made it" in a profession may also be at risk of underestimating other people's lived experiences.  When I worked for the NHS I knew a female gynaecologist who was very harsh to her patients with PMT - " I wouldn't have got to be a consultant if I took a week a month off feeling sorry for myself " was her attitude. In the same way, I knew "survivors" of mental health services who were violently opposed to giving ADHD kids Ritalin because of their experience with antipsychotics. They could not see that not all psychiatric drugs are evil. Yes, I have been there, done that, taken the Ritalin and lost the teeshirt, and I am not opposed to medication, correctly prescribed and with informed consent. Other people's mileage may vary, and I have to respect that.

In terms of people who wouldn't get a diagnosis on the nhs, I would say that this is a failing in the NHS process.

I work in a primary school and there are children there that I would say with absolute certainty are autistic- I can see it in their behaviour and mannerisms and how they relate to others.  I've had meetings with professionals about those children and heard the questions that they ask, and so much of it is stereotypes.  And some of those children are getting passed over because they don't fit certain patterns even though they clearly have challenges that meet the criteria, they just present in a different way.  

I also agree that people would not go to the effort and expense of getting a private assessment unless they had very good reasons for believing that it would lead to diagnosis.  

Possibly due, in part, to all the conflicting information available, that this thread is an example of.

I feel this. 

I also feel intense confusion but I don't know why. 

Does anyone else feel this?

I worry about this. 

Now that is SPOT ON !......in my opinion......albeit, I think this mainly applies to older souls who have already "lived" quite a bit and know themselves reasonably well and know that false horizons exist in this world - but NOTHING compares to seeing the sunrise/sunset on your own reality

If, like me, anyone feels a profound and life changing sense of relief, sense of self-identification and validation when receiving an autism diagnosis, I feel they are almost certainly autistic.

I was diagnosed with ASD online just after Covid in 2021 at age 51 via the NHS (I’m not quite sure if this was using a private company) but my family in Ireland had been pushing me to get a diagnosis since 2019 - reading through this post, given the online nature of my own diagnosis, even though I’m no expert, I’m beginning to doubt the accuracy of my diagnosis, aside from the true motivations of family back home for me to get a diagnosis later in life, especially since all the support services are mainly geared towards children - I wonder too if, even aside from private sector involvement, it has somehow become “fashionable” to be diagnosed, both as children and adults, without more robust safeguards in place as you describe?

That would be a 'forced marriage', not an arranged marriage, where the consent of both parties is required. Far more dubious ways of marrying were once relatively common in this country. As Thomas Hardy wrote in 'The Mayor of Casterbridge', the selling and buying of wives, often at country fairs, was considered legitimate, if not laudable.

I know it is over-romanticising / naive..........but I do feel, that for me, your settlement would suit me perfectly.  Unfortunately, trying to seek it out (when you haven't been born there + lived your life there) is pure follly - you'd always be the outsider and never truly benefit from that sense of belonging.

I live in a small outback village in Scotland, everybody knows everyone.

It is peaceful with little noise.

The idea of arranged marriage is frightening, what if you had to marry someone your didn't like?

 Certainly, the lives of most of our ancestors would have been far easier to live as an autistic. Living in a village with maybe 50 people who all know each other, working the land with its unvarying and predictable routines, and having marriages largely arranged by parents, would have been ideal. 

Something which sits uncomfortably is the sense that "normal" human behaviour is being pathologised however I think as the world is changing to become faster and more demanding, more people will be diagnosed or seen as autistic because once suitable environments are becoming less suitable. So there are more difficulties. I'm saying this because I think there are plenty of people in generations before me who were or are autistic who may just be seen as a bit odd or eccentric and got on with their lives without the additional mental health difficulties etc because the world was different then. I'm not speaking for everyone of course. 

Absolutely.

If there was a "diagnosis" for borderline autism then my other half would easily have that. Like there is not enough for may be what people currently consider "autism proper" but there is also the regular presence of enough criteria to not ignore the possibility.

I think if you account for those that mask well enough to never get picked up for the diagnosis and the borderline cases we autists are close to 1 in 50 as an estimate. Which is really a lot of people. It's %10 of the population and even if using the American figure of 1 in 69 (lets round it up to a neat 70) and applying it to a global scale that means there are more autists than ginger haired people in the world. Which I think should really say something considering nobody is trying to "cure the ginger".

I suspect we are a higher proportion of society than anyone realises. Obviously NTs are the majority, but I think there are many of us fly under the radar, not even realising ourselves.

I was diagnosed at 30. My 20s were the ten years of my life.

Shardovan said:

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. 

Maybe not so shocking when considering the American ratio being I in 69 and the problem with social camouflaging and personal masking being considered more a female tendency by some, with 3 males being diagnosed for every female.

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. 

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.