The UK's NHS's Selective Manner of Autism Diagnosis

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So, I'd like to share and discuss my discovery of this.

First, background.

I suffer severe OCD but have no diagnosis of autism, though not for want of trying.

I was visiting friends 14 years ago for the first time in some years. I noticed that their Aspergic son talked at me about his interest in the same way I did to adults about mine when I was his age. So, I started wondering if there was more to me than just OCD. My OCD didn't really exist in my childhood, but remembering back to it, I noted many patterns that seem to fit Asperger's.

I next found out from the wikipedia article on Asperger's Syndrome that OCD and Asperger's were 25% co-morbid. Since the populations of OCD and Asperger's sufferers are about the same size, I deduced that an OCD sufferer has a 25% chance of being autistic. The Wikipedia artcle has since changed, and the mention of co-morbidities has been moved to a separate article ("Conditions comorbid to autism"¹), but the OCD co-moridity is still there², though now at 30%. Hmm.

I asked my then Community Mental Health Team (CMHT) to refer me for an autism diagnosis. It was a 9 month wait, but the assessment in 2014 wasn't what I expected (no tests, just an 'interview'), and in the end I was declined a positive diagnosis, especially because I seemed to make good eye contact. I felt a bit cheated at first, but decided that maybe I had misintepreted myself. That was over ten years ago.

Then in 2015, I saw a tweet by a well-known expert in programing language security, Meredith Patterson, announcing the loss of another "late-diagnosed Aspie to suicide". I read the blog she linked to, and ended up taking the tests that the deceased's blog had linked to. One was a simple ASD questionnaire, while another was Simon Baron-Cohen's Empathiser-Systematiser questionnaire. I found myself with a very high ASD quotient, and off the bottom right of the ES chart. I started to wonder again if autism was really behind it all, and my OCD was secondary to it. Having joined a different CMHT now, I asked for another autism diagnosis referral last year, which has still not been submitted, yet the waiting time has now increased to three and a half years.

At this point, dear Reader, I must split the post into parts, as something seems to be messing me about if I post too much text in one go.

Second, the discovery.

I recently watched the UK's Channel 4 series "Patience", to see if I could see myself in what I hoped might be a realistic protrayal of autism. Amazingly, the character Patience was shown performing strange behaviours that were instead very like my OCD: a need to arrange things precisely on a desktop, or to not be touched or bumped into. Yet, when I read the follow-up reviews and interviews, I found no recognition of this at all. It was all interpreted as standard autism. Indeed, the two UK OCD charities also made no mention of "Patience" and the apparent OCD on their forums. Hmm again.

In looking for more clues, I started finding what I could about "Patience" and Purvis herself. I found a Telegraph newspaper interview³ of Ella Maisy Purvis, the autistic actress who plays Patience Evans, and I made a rather horrible discovery about autism diagnoses by the UK's National Health Service.

I find this all quite devastating. Not only does it seem to suggest that I was cheated in that 2014 assessment, but also, that the NHS reserves diagnoses for only select autists in a misguided belief that higher-functitoning autists (I supposed is the term) don't need a diagnosis to help them navigate life. Yet, Purvis was sure that she did. I can't afford a private diagnosis anyway. Yet, now I'm wondering if I should even try for the NHS diagnosis after all.

I feel that a NHS diagnosis would carry more "authority" than a private diagnosis, especially in the view of prospective employers. Since Wrong Planet is USA-based, I must bear in mind how US citizens would view this. I understand that US healthcare is entirely privatised (I'm aware of MediCare and MedicAid) so that all autism diagnoses there are always from private practioners, and I would suppose that they are always taken seriously in the USA.

However, something weird that happened in the UK a decade ago might mean otherwise. ABout that time, a UK newspaper called "the Daily Mail" started publishing articles claiming the ADHD was being severely overdiagnosed in children (all part of the "War on Woke" anti-snowflakism, really). I became aware that the claims came from a practitioner in the US who had published a book on this. However, of course the Daily Mail was misleading the UK public, because the rate of diagnosis of ADHD in the USA was about ten times the rate in the UK. My thinking is that the fact that US parents have to pay for a private diagnosis in the USA means that there comes to be a systemic expectation of a positive diagnosis in return for the good money paid. In the UK, one does not have to pay for a NHS diagnosis, so this is why I would be seen as more "authoritative". There is no incentive to "sell" autism (or ADHD) diagnoses.

Yet another split...

I'd like to know what people in the UK think about this NHS stance, and whether US citizens are happy with the private diagnoses of autism there. I'd also like to know what people thought of "Patience" and Purvis's portrayal of autism, so I hope that the TV series makes it to the USA's PBS soon (I still don't find any evidence of release dates there yet).

Precontemplative.

1 https://en.wikipedia.org/wiki/Conditions_comorbid_to_autism_spectrum_disorders
2 [url]https://en.wikipedia.org/wiki/Conditions_comorbid_to_autism_spectrum_disorders#Obsessive–compulsive_disorder[/url]
3 https://www.telegraph.co.uk/tv/2024/12/31/ella-maisy-purvis-interview-autism-patience/

Ah! The End!
Wait: BBCode doesn't support #Hashtags in URLs?

Autism is present at birth, unlike OCD which develops later in life (after 8 years).
I had a partner with OCD for long time so I know a lot about it.
Perhaps the biggest different is that autistic rituals are calming and put the person at ease when they do them.
OCD is the exact opposite. They can make people agitated.
Someone with autism can calm down when allowed to do their rituals in front of strangers!
In other words, someone with autism can retreat into their own little world and not worry the slightest about what others are thinking about what they are doing.
Someone with autism can be distracted by a shiny new toy, much like a dog can be distracted by a squirrel.
OCD rituals are always replaced by new ones. If someone has a ritual with a cooking stove and the stove is taken away a new ritual will appear.

That really riles me. You go to all the trouble of trying to get a diagnosis but the so-called experts decide to act as gate-keepers and deny it to you because you make eye contact or seem high-functioning and they want to conserve support resources (or something like that) to those they think deserve it more.

I agree that kind of selectivity is not right.

Back when I first joined the group a diagnosis would have cost me $1500 in Connecticut.

Whoever "diagnosed" you may have decided that your OCD would impair your socialization to the point where getting help for autism wouldn't help any.

Prior to my retirement from the NHS I worked in an Autism assessment team as a diagnostician.

It is comparatively rare to have an openly Autistic clinician in the this kind of service and other clinicians often seemed uncomfortable with my presence especially those that like to talk in terms of "us and them".

The most stressful aspect of this work was the continual challenges from the other diagnosticians who were neurotypical. This led to disagreements and tension.

In my view they had (have) a very narrow and stereotypical understanding of Autism. They were also prone to make judgements based upon emotional responses to individuals personal circumstances. When they are challenged they tend to selectively quote specific DSM and ICD diagnostic criteria. I am of the opinion that whilst both of these are flawed from the perspective of being based on a deficits/disability model they do provide scope for flexibility and allow a degree of latitude in relation to individual presentation.

Some diagnosticians appeared to me to have a poor understanding of clinical diagnostic criteria in any case. I lost count of the times I heard them say "he/she cant be Autistic because they made eye contact, have some friends etc".

In my opinion the clinical diagnostic process is very much part of the 'business of Autism' and the neurotypical folk that make up most of the staff teams in these services have a vested interest in being valued as 'gatekeepers' and maintaining the power imbalance that exist between them and Autistic people.

I have found that private diagnostic assessment in the UK is more nuanced and reliable.