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Neurodiverse Mumsnetters

Sorry- I don’t know whether to request assessment.

11 replies

dangermouseisace · 11/06/2022 10:17

Hello. I’ve had diagnoses of various MH issues over the years. Eating disorders, anxiety/depression and last of all EUPD. EUPD didn’t make much sense to me as I don’t fit the criteria. There is a lot of talk about whether many with EUPD have autism, and that raised a question with me because my son is likely autistic. He's undiagnosed, won't go for assessment. I didn't want him labelled so didn't request when he was younger but that's another story. I have a fair knowledge around autism as I work with people with autism.

I've done the online test and scored quite highly for autism which did surprise me to be honest. I'd though yes for my son and maybe my ex, but not me.
I worry that if I discuss this with my GP because of my EUPD diagnosis I’ll be assumed to be attention seeking. Or just unhappy to be labelled with EUPD. However, I'm more interested in trying to get some understanding so I can get on with life as best I can. There are issues in my life that cyclically get worse, then I end up having a massive break down. I want to avoid this as my life has been going well but I can see it all coming crashing down again without change.

Has anyone who has been in this situation got any advice.

OP posts:
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BoardLikeAMirror · 11/06/2022 10:24

One thing to be aware of is that it's not easy to get a referral for assessment - it may be area dependent but in my area I am told they prioritise children (unreasonable IMO but that's another story) and if you do get referred, the waiting times are very long.

I have also been told that if you have anxiety they are only interested in treating the anxiety. In other words, fobbing you off with tablets.

I'm now going down the private route, but even that isn't quick as the private clinics are taking the overspill from the NHS waiting lists.

It's an absolute nightmare and be warned the whole process is stress and anxiety-inducing in itself.

I am hoping it will be worth it in my case, simply to get some answers and an idea of how I can support myself; also a firm platform to request reasonable adjustments at work.

Best of luck, whatever you decide.

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OneRingToRuleThemAll · 11/06/2022 10:30

I mirror the comment above. I was diagnosed with autism 6 weeks ago at the age of 34 at the Lorna Wing Centre.

I opted to go private as NHS waiting times were 5+ years. As a private patient I waited one year.

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NCed4Help · 11/06/2022 11:14

@OneRingToRuleThemAll @BoardLikeAMirror Sorry to hijack this thread but could I ask how much it has cost you to get assessed privately?
I will probably have to look into this myself as I imagine wait times here are also insane

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BoardLikeAMirror · 11/06/2022 11:17

I had quotes ranging from £1200 plus possible extra time/expenses, to £2000 'all inclusive'. I'm paying £1500 which includes an assessment and report.

I don't know if fees vary from area to area - I'm up north.

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OneRingToRuleThemAll · 11/06/2022 11:32

NCed4Help · 11/06/2022 11:14

@OneRingToRuleThemAll @BoardLikeAMirror Sorry to hijack this thread but could I ask how much it has cost you to get assessed privately?
I will probably have to look into this myself as I imagine wait times here are also insane

I paid £1900

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Ithinktomyself · 11/06/2022 11:38

Literally just posted virtually the same post over on Mental Health (didn't realise there was a Neurodiverse board). Also spiralling at the moment. No advice I'm afraid but when I looked into diagnosis last year it was around £1000.

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NCed4Help · 11/06/2022 13:46

Jeeeeez, that's a lot! Waiting list for me I think!!!

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dangermouseisace · 11/06/2022 17:48

My messages keep disappearing half way through typing! Thank you for your replies. I'm not worried so much about a wait, but being not taken seriously. Now I have the EUPD label EVERYTHING is viewed through that lense and I'm concerned I will be seen as attention seeking. My thoughts, feelings and motivations are assumed and it is frustrating because I am misinterpreted.

OP posts:
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dangermouseisace · 11/06/2022 17:49

I have the money for a private diagnosis but I've set that aside for my son, if or when he needs it.

OP posts:
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Pinkandpurplehairedlady · 11/06/2022 17:54

I’ve just had my assessment and came back as autistic. Like you I had been diagnosed with EUPD previously but it didn’t seem to fit. I went via the community mental health team who took my concerns seriously and referred me on to the assessment team. I had to wait about 2 years for the assessment so it’s worth seeing you can get on the list sooner rather than later.

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BoardLikeAMirror · 11/06/2022 18:06

Now I have the EUPD label EVERYTHING is viewed through that lense and I'm concerned I will be seen as attention seeking. My thoughts, feelings and motivations are assumed and it is frustrating because I am misinterpreted

Sadly, that's how it was for me. GP eventually referred me - referral declined because triage team said my anxiety and depression needed to be treated - wouldn't entertain the idea that my MH issues might be because there is an underlying neurological issue. I think they are so far behind with assessments, they look for any excuse not to add you to the waiting list.

GP suggested seeing a private psychiatrist to write a report to re-refer - but I thought by the time I've paid for that, with no guarantee of joining the 5 year waiting list, I might as well pay for a full assessment where at least the wait time is in months, not years.

I gave up on the NHS process because it was wrecking my MH. I can ill-afford the private costs in the current climate - but I can even less afford to lose my job because I can't get the right support to function - so I am trying to view it as an investment.

I really hope you have a better NHS experience, OP, but I would suggest doing your best to mentally prepare for it being stressful and upsetting Flowers

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