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"Somerset Autism Spectrum Service."

About: Somerset NHS Foundation Trust

(as a service user),

The short version: in my experience, if you can string a sentence together, you are not autistic.

I have long history of depression, and as I've got older, I'm really feeling more and more that I have nothing in common with "normal" people. Despite previously having my concerns dismissed by various so-called professionals, various circumstances made me ask my GP if he would refer me to a diagnostic service. With hindsight, I wish I had not bothered; however, he referred me to the Somerset Autism Spectrum Service.

My understanding is that in some areas, the diagnosis is undertaken by a multidisciplinary team. Here in cow country, they use what appears to be the cost-cutting model of a patient seeing a single psychologist.

I had a couple of appointments, and the psychologist made a third appointment for me to see them in October - telling me that they were not sure if I met the diagnostic criteria or not. I couldn't make the appointment, so it was rescheduled. The psychologist couldn't make the rescheduled appointment, so it was rescheduled again - for this time for January.

Very early on in the appointment, the psychologist told me that he didn't believe that I met the diagnostic criteria for ASD. they said that they felt that it was important that we met face-to-face, as they were concerned that I would experience this as a rejection. they didn't want that.

In the first two appointments, the psychologist had dictated the topics of conversation, and I didn't have a meaningful opportunity to tell them various things. I had thought that the third appointment would be a continuation of the diagnostic process, but apparently not. I told them during that third appointment that there were things that I found difficult to talk about that related to the diagnosis. They didn't make any meaningful attempt to coax any of this information out of me. I was _very_ seriously depressed at the time. I deflected the one half-baked attempt to enquire about my safety with depressingly familiar ease (I realised some time back that no-one actually cares...)

I had needlessly waited three months for an appointment... for something that I could have been told over the phone. During this time, I had moved to Bristol, and had to drive to Wells for this unnecessary appointment. I had previously been given the impression by various NHS folks that, if I registered with a local GP in Bristol, I would have to start the diagnostic process from scratch. This appears to have been incorrect; however, waiting for the unnecessary appointment meant that I could not access the help that I needed while I was living in Bristol, as I felt that I could not register with a GP there. The staff at the Autism Spectrum Service apparently cannot accept that their behaviour might have had an impact on one of their patients.

I have subsequently been in communication with the PALS team about my experiences with the service. The psychologist I saw has not been honest in my opinion with their colleagues there: they now claim that the third appointment _was_ diagnostic. This is not what was said at the time. I really wish I knew what I said... y'know... in the first five or ten minutes that made them realise so early on in the appointment that I wasn't autistic. That's sarcasm, just in case it doesn't come across on screen.

Probably most of my problems in life have been caused by me being honest when, according to societal norms, I should lie. I've had issues previously with healthcare providers in which in my opinion they have made up lies to discredit me. (Thankfully in that case, I have the audio recording to prove it.) The psychologist knew this, and knew that I have very deep seated trust issues. However, when challenged, they would not be honest with colleagues, regardless of the impact that has had on me.

I cannot imagine the circumstances that would lead me to engage with any other psychologist/psychiatrist/mental health professional. It's important to me that I can trust the person I'm talking to. I've learned that I should not place trust in healthcare professionals.

In terms of the actual diagnosis, it feels like if you're female and can string a sentence together, you cannot apparently be autistic. If you're in your forties, and you can find a narrative in a creepy, text-free picture book, you cannot be autistic.

I did ask the Somerset Autism Spectrum Service if they could provide any evidence that:

- their diagnostic procedure was comparable to a diagnosis within a multidisciplinary team, and

- whether their approach was less likely to diagnose female patients (sitting chatting is supposed to be easier for many autistic women than men), and therefore be discriminatory.

The couldn't provide any evidence for either. Just a glib reassurance that (they believe) they can recognise so-called "masking" in women. They also pointed out that - it is currently believed - that there is a higher percentage of autistic men than autistic women. That is not the point that I was making. It's the diagnostic accuracy of their service that I would call in to question.

If I had any confidence in the diagnostic competency of their service, I would be willing to accept that I am not autistic. However, I still do not feel as though I know this one way or the other. I cannot engage with a different service. I'm a bit stuffed really...

A couple of requests:

- if someone from the service, or their allies want to leave a patronising "contact us" type message, please feel free not to. I've contacted/discussed/had my complaint dismissed etc. already.

- if the care opinion staff wish to reword this, please add a note to the bottom admitting that it's been edited/sanitised. Thank you in advance. Do not remove this sentence

 

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Responses

Response from Hayley Hughes, Associate Director of Patient and Family Centred Care, Nursing, Somerset NHS Foundation Trust 4 years ago
Hayley Hughes
Associate Director of Patient and Family Centred Care, Nursing,
Somerset NHS Foundation Trust

Listens to patients and carers

Submitted on 06/08/2019 at 11:38
Published on Care Opinion at 11:41


picture of Hayley Hughes

Dear Annoyed and Fed Up,

My name is Hayley, I am responsible for Patient Experience for Somerset Partnership. Your description of your experience is vivid and reveals your anger and frustration at the treatment you have received and the response to your complaint.

I understand that you don’t want anyone from the service to leave a meaningless ‘contact’ message but I would very much like to be able to at least explore with you any possibility of resolution. My email address is Hayley.hughes@sompar.nhs.uk if you feel able to talk to me please send me a message with your contact details.

Hayley

  • {{helpful}} {{helpful == 1 ? "person thinks" : "people think"}} this response is helpful

Update posted by Annoyed and Fed Up (a service user)

Care Opinion declined to publish my response to this. I'll try a more concise reply, and see if it's considered suitable for sharing.

I now have no ability to trust healthcare workers, and am finding it impossible to consider engaging with another "professional", regardless of the likely outcome.

One of the worst things, is that if I try to tell other people about what's going on, they'll say things like, "why don't you try to get some help". They have no earthly idea how futile it is.

Please also note that, despite a Care Opinion moderator leaving my last sentence in, they did alter the review. Apparently they value honesty and transparency in NHS organisations more than they do in their own.

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