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 know this is a month old thread now but it was a very interesting one to read so I’m glad it was resurrected.

my main concern with over diagnosis which ive heard from elsewhere is happening in the private sector is that people’s true diagnoses are being missed so they might not get the support they need. 

Using any type of imaging or genetic tests would get my approval, as an adjunct to the interview and observational type assessments.  This would be especially useful for the many people who feel like imposters for even bringing up the possibility of ASC. 

NAS73180 said:

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

How do you define 'needed' here?

'Needed' by whom?

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.  

Thank you.

Good to know

Thank you Deepthought and Martin for those exceptionally helpful replies.

Former Member  ~ in respect of not having been able to use the @ + username 'mention' function in relation with Martin 's username ~ you just have to keep using the space bar or key after you have done the @ + username until it comes up on the listing. 

Martin said:

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

Thanks Martin  as I have rather a liking for diagnostic texts ~ and as such had to do a lengthy internet trawl to find a PDF of the Autism Diagnostic Interview~Revised (ADIR) in order to see what all the fuss here was about:

https://www.pdffiller.com/jsfiller-desk13/?requestHash=97b2797cba52a80cf2fd47e817629143c207ac61662e3490daa14191effbd581&projectId=1200553782&loader=tips&MEDIUM_PDFJS=true&PAGE_REARRANGE_V2_MVP=true&isPageRearrangeV2MVP=true#c95710567e9841b3b6a992543f1b0eeb

Whilst I was searching ~ all the diagnostic services and information on it that I happened across, stated that it is used in relation with the Autism Diagnostic Observation Schedule (ADOS), so that could well be the other half of the 'gold standard' mentioned by NAS83686.

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

I try and remind myself that actual imposters do not feel imposter syndrome. So in feeling this it's highly unlikely we are imposters. 

I had an assessment because I needed an answer one way or another. Also because I needed to know in order to inform how I addressed my mental health. I felt no one would believe me, and in accessing MH treatment I don't think I would have been taken seriously about being autistic had I not got an official diagnosis. I did lots of research before I made a decision which provider to use. I felt confident their assessment was robust enough and the assessors were experienced enough that I would get a "fair hearing".

I'm glad you feel happy about it. 

I like wolves  

I feel this. 

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

Does anyone else feel this?

I worry about this. 

...And, some of us true imposters are still not wholly convinced that a "formal" diagnosis is going to change anything, one way or the other.  I'm not sure it would help nor hinder me.  There is no practical advantage so far as I can understand and I do not believe it would affect me one way nor the other.  I would expect a diagnosis to go in whichever direction I found myself behaving under those circumstances, as I found them !?  I certainly would not be cross if I was deemed to be something "other" than autistic - if I were a diagnostician trying to assess me (without access to my own thoughts) then I would be unlikely to know, (with any degree of certainty) what the living hell I am.

Thankfully, I know that autism is the only diagnosis that fits, at all times, over my living memory - and I am still amazed at how often yet another piece of my history slots into place.

So happy !

Yes because if you don't inherently feel different to others you are not likely to start wondering if you could be autistic. Then reading into it all then going for an assessment. Parting with lots of money or waiting years on nhs. There's a lot of stigma still atttached which people would rather avoid. 

I cannot believe that many adults put themselves through the distress of going through the assessment process, and digging over difficulties, past trauma and perceived failures is distressing, for trivial reasons. People go through assessment because they are driven to by a desperate need to make sense of their lives.

This thread had actually made me anxious about my own diagnosis being valid so thank you for this post.

It has reassured me.

That is exactly how I felt too.

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?