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.

Autistic teen says he was left feeling 'inhuman' after being rejected by NHS mental health services

An adult diagnosis of autism is only useful for knowing you have it.

It doesn't help your boss, as your boss is too busy to learn all about autism in order to figure out what and what doesn't apply to you. If you need accommodations I suggest asking for exactly what you need. For example, I've had co-workers with ask for special chairs to sit in all day.

No, medications are easy to prescribe and the drug companies get paid.

Therapists are expensive. I remember a judge who had a stroke. He wanted to get as much speech therapy as possible before the insurance coverage ran out! If a judge has trouble getting enough therapy, how is someone unemployed going to get what they need? I overhead the therapist talking.

Hello. I am in the UK. One could say I am high functioning as I have a higher than average I.Q. I did have a sceptical GP but she did refer me, and I was accepted on the waiting list to be diagnosed, and just over a year ago I was diagnosed. It was a long wait.
What I will say is that for me, I became desparate due to the situation I was in. I do feel for those either on the waiting list or wrongfully diagnosed.
I sort of escaped in my past due to both not understanding what autism was (Mainly due to autism stereotypes on TV and the press which concentrated on wheelchair bound people who had severe physical issues) and because of this, I assumed those who thought I was autistic were playing some sort of joke! (I have a sense of humour so people would natrually say things which I assumed were humorous to them, as I can't always tell who is serious or not.
In a way, I would have never achieved what I achieved had I been diagnosed earlier BUT, at the same time, I would have saved myself from several mental crashes had I had known, as I would not have pushed myself so hard. (I always thought that somehow, for me to achieve similar results I was putting in a far greater effort, though in my element it can be the other way around!)

I have noticed I get lost in details... I started looking for a tool today and I ended up being sidetracked and spent a few hours on something else. When I was tired out and ready to pack in, I remembered I was looking for the tool! It will wait for tomorrow or another day!

Hello BTDT!

Hello MrsPeel!

I think this NHS gatekeeperism needs to be taken down! It's not just about denied diagnoses, but the apparent policy that the bar can be that high because of a belief that autists who do make good eye-contact or mask well can't possibly have enduring life problems due to their autism. Exactly as Ella Purvis protested!

This idea that triaging autism for NHS resources should also mean withholding diagnosis because high-functioning autists cope well with life is just plain wrong. I feel that I, and other I have seen when I worked, have suffered due to autism, or at least being neurodivergent. A workplace culture has been allowed to develop involving poor performance appraisals, withheld promotions, office political shenanigans, outright bullying, preference for redundancy, and constructive dismissal for those who are not "able". I believe that it is because high-functioning autists cannot have that status of diagnosis that makes it much harder to argue for reasonable adjustment, and to make the managers and human resources idiots take note and find out what autism means.

Here in the UK, there is the Equality Act 2010, which holds that a mental illness or condition that is long-lasting constitutes a disability, and that this is a "protected characteristic". This same Act provides that a disabled one can ask an employer for a "reasonable adjustment", which in the case of autism could mean as little as ensuring a culture of awareness, understanding, and inclusion, and acting against ridicule, teasing, and avoiding. However, without some of an employer's best workers turning out to be autistic (shock!), how can we ever change the culture to be more agreeable to.

In the general context of disability, despite this Act being in force for 15 years now, it is well-known among the disabled who do try and prusue employment that HR minions disregard reasonable adjustment request all the time, as the law is not enforced. (The Industrial Employment Tribunal service would be to only real place to challenge this, but has been allowed to wither to an untimely, lengthy, and costly process that seldom delivers justice.

So, that's why I see the NHS policy as misguided: it is not about claiming resources from others, but about being able to hold up a piece of paper to employers, and saying "look! now adjust reasonably!".

I'm minded to campaign on this even if I don't ever get a diagnosis. Maybe I'll hide behind a pseudonym. "Steed" comes to mind ...

Precontemplative.