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Getting an autism diagnosis in adulthood

48 replies

Doorrunner · 26/10/2018 19:54

This is something I keep coming back to. I have a strong feeling that I have autism. I'm in my mid-30s. My DC is autistic.

Can anyone share their experience or knowledge on this process? I'm looking at going down the private route rather than NHS. I wouldn't even know where to begin or an estimate on cost. I live in the South Wales area.

I wouldn't 'use' the potential diagnosis for anything. Truth be told I probably wouldn't even tell people. I just feel I need closure and as the years have gone on I can't seem to shake this issue off.

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WhyAmISoCold · 26/10/2018 23:58

My diagnosis wasn't lengthy either and I didn't have to take someone who knew me as a child.

I had a private appointment with a psychologist who went through my history, took 1.5 hours. Then she sent a copy of this to my GP who agreed to refer me on the NHS, had an appointment which was a few months after I think. Appointment was 1 hour with a consultant psychiatrist, talked about my struggles and asked various things, I filled in the AQ questionnaire, he had the report from the psychologist so didn't delve too much into my background. Diagnosed me on the spot with aspergers. So 2.5 hours in total.

I was expecting it to be a lot more involved tbh.

Doorrunner · 27/10/2018 00:01

Sput I feel the same. I'm so awkward it actually makes me cringe. In turn, this then kills my self esteem. I don't 'get' group conversations, I just can't seem to understand when I should talk despite desperately trying to get my voice heard. It's happened multiple times today with different people and while driving home the whole autism thing reared up again in my head. I find eye contact painful. Like it almost actually physically hurts inside my chest. Nobody ever seems to listen to me. Thankfully people seem to like me but it's very much in a pitiful way and I'm branded as 'quirky'. I feel invisible.

If I knew it was because of autism I could reason with it.

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FaithInfinity · 27/10/2018 00:17

I realised I was probably autistic when I read a MN thread a couple of years ago. It was indeed a ‘lightbulb’ moment for me. I’ve had years of MH issues, awful anxiety and depression at times. I was diagnosed with GAD.

I discussed it with DH and my sister and asked GP to refer me. She said Well I don’t think you are but if you really want me to, I’ll refer you. Hmm I had a long wait but I didn’t feel I could justify spending money on the assessment when I wasn’t that sure I’d be diagnosed! It took me a month from when I received the screening questionnaire to actually complete it and get it back. I didn’t do the parental form - my Mum passed away and as much as I love my Dad, I wasn’t sure he’d really be able to complete it. He worked long hours when I was a kid, my Mum did much more of the hands on care. Now I realise he is in fact very ‘spergy’ himself but he’s happy with life the way he lives it.

Anyway it was 14 months from referral to assessment (GP didn’t even know who to refer to and they restructured the system during my wait). I had a DISCO assessment with an LD nurse who had had special training. It was intense - took about 2 1/2 hours. Good thing was I got too tired to mask any more. She went off and inputted my data into an algorithm and cams back a couple of weeks later and confirmed yes, I am indeed autistic. I cried with relief that I finally had an answer that explained why I didn’t do life like other people did, why I find things harder, why some people don’t like me. It’s been nearly 3 years now. I’m much happier since I was diagnosed and am finally accepting additional help when it’s available (I flew recently and used the airport’s hidden disability system which made a huge difference to how I felt when flying).

It’s definitely worth looking into. The alternative to private diagnosis is through a charity which is usually a token amount. Action for Asperger’s do asessments.

SputnikBear · 27/10/2018 00:34

If I knew it was because of autism I could reason with it
Me too. I’ve kept an email from an employer who offered me a job then rescinded the offer after our second meeting. They said I was too nervous and they could forgive that at our first meeting but not the second. Also I was too withdrawn, not personable or smiley enough, and didn’t make enough effort to communicate my personality. And I was unsuitable to work in a client facing role as they thought I’d turn the client off and be unable to develop rapport and build a relationship. They said they offered me the job because I was overwhelmingly skilled and qualified, but on reflection the negative personal factors outweighed that.

It was (and still is) a huge blow. It made me wonder if this is how everyone sees me, including all the other employers who’ve rejected me, and all the people who haven’t wanted to be my friends my whole life. I felt like I’d wasted my time working hard on qualifications because nobody would ever hire me due to my personality, which I can’t change. Perhaps I could justify them as being mean disablist bs if I was diagnosed with autism. Because currently I have no idea why I keep being rejected for jobs, friendships and other relationships.

Doorrunner · 27/10/2018 00:41

Oh sput Sad I can relate to your post so much. I'm sorry you've experienced such blows.

I've tended to sway the other way and have never put myself 'out there'. I work a dead end shitty minimum wage job as I'm far too overwhelmed to go beyond that despite having burning desire and good qualifications. It's never going to happen though and I will indeed retire on this shit job with no pension.

This has thread has turned I to quite the therapy session! Blush Thank you all so much.

The struggle is real Flowers

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WesternMeadowlark · 27/10/2018 07:17

I found the whole thing fairly quick and painless on the NHS.

What I would say is don't be afraid to overexplain things. And if they give you a questionnaire where you can't choose a response because none are exactly accurate so you get very stressed, tell them that. Wanting to put across the exact truth and not misrepresent yourself at all is an autistic trait, so don't be afraid to go with any impulse to do it.

Allistic people overall tend more towards wanting to hear something that's straightforward and easy to understand, rather than hear what's true, and learning to give them that - which usually feels like bullshitting at best - is part of masking.

So take your time to answer questions - slow processing of conversation is also typical of autism, so again, you won't be misrepresenting yourself by going as slowly as you need to - and do correct whoever's referring/assessing you if they say something about you that's wrong. Similarly, you can bring up anything about the process so far that's bothered you.

I made a long list of everything I could think of that could be related, and took that with me. My psychiatrist offered to read it, and I declined just because it was written in a way designed to prompt me rather than to be read by someone else. But that means that handing over a list for them to read may be an option. Do make a note of even tiny things you think could be relevant, because most diagnoses of anything are cumulative.

I also mentioned reasons I'd previously dismissed the possibility of being autistic. For example, I'm hugely touch-seeking, and I'd only ever heard of autistic people being touch-averse. But it turns out that being touch-seeking is also an autistic trait; it is often the case that the opposite ends of each behavioural/experience scale are the autistic ways of being, and the middle that's not. E.g. hypo- and hyperempathy are both autistic.

And the eye contact thing seems to be a big deal. I don't mind it, I just don't understand it or know how much/little to make, and that was accepted as being a very significant symptom, so an aversion should count very much in favour of you being diagnosed.

You could also mention feeling such a strong need for a label for what's going on with you. Because I mentioned that to my GP as probably being a trait in itself - that I like to have things categorised and sorted out even if it's not necessary - and she agreed.

And I have found it helps. I've been surprised by how accepting people are once they know that that's why I am the way I am, actually. I didn't expect any improvement, in fact I expected more prejudice, not less.

But it's like I was getting all the prejudice anyway, because somehow they could already tell. There's been research that suggests that allistic people often form a negative opinion of us based even on so little as a glance at a static image, so that's absolutely possible; many have a kind of spidey sense that detects us. So being able to tell people I'm autistic has only improved matters.

Best of luck, whichever road you go down.

WesternMeadowlark · 27/10/2018 07:33

Took me a while to find it, otherwise I would have included it:

An article about the research into anti-autistic prejudice I mentioned.

From the study:

"...we find that first impressions of individuals with ASD made from thin slices of real-world social behavior by typically-developing observers are not only far less favorable across a range of trait judgments compared to controls, but also are associated with reduced intentions to pursue social interaction.

These patterns are remarkably robust, occur within seconds, do not change with increased exposure, and persist across both child and adult age groups. However, these biases disappear when impressions are based on conversational content lacking audio-visual cues, suggesting that style, not substance, drives negative impressions of ASD."

In other words, if you're autistic, or have reason to suspect that you are, and you feel like people have always taken against you far faster than you would have thought possible and for no good reason, you're probably not imagining it.

I've known autistic people with terrible persecution complexes due to this, and while that's not OK and I won't live with it, I completely understand why it's happened.

Doorrunner · 27/10/2018 08:57

Thank you everyone for your feedback, I've read each post very carefully and appreciate it.

Thanks for the link western, interesting reading.

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SansaClegane · 27/10/2018 09:26

Hi Doorruner.

I've been 'different' and struggled with mental health issues all my life. It was actually here on MN that someone once posted a link to an online autism test, which I took just out of curiosity and scored very high on. This really got me thinking and suddenly, everything just seemed to make sense! A couple of months later, my youngest DC was flagged up by preschool for ASD, and to be honest I'd already noticed he was a bit different, he's so much like me.
Anyway, in May this year I went to the GP to request a referral for my DC and then, although I was incredibly nervous about it, asked for a referral for myself as well.
I had to fill in a questionnaire for the GP, then was sent two more questionnaires by the Adult Autism unit I had been referred to. Then phone call in July and was offered an appointment in August!
The assessment was very lengthy (whole day) with some tests as well. I went back in September for the second part and got my diagnosis there and then.
It was a huge relief for me. Like you I don't plan to 'do' anything with the diagnosis, as I cope ok for most of the time, it's just knowing what's wrong with me that gives me closure of sorts.
So I wouldn't dismiss the NHS route, it went very quickly with me.
Oh and I didn't bring a parent/other person either since my parents live far away and I don't particularly talk to them about that kind of thing. It might make diagnosis more difficult, but not impossible.

Snomade · 27/10/2018 10:18

I've heard that these days the NHS don't 'accept' private diagnosis and won't put it on your medical records without an NHS evaluation and diagnosis. No idea if that is true nationwide but I believe it was told to a friend of mine, by her GP, a few months ago.

Snomade · 27/10/2018 10:27

Sorry, that's just diagnosis of autism and aspergers, not other conditions, that I have heard that they don't accept. Not sure if my comment was very clear!

Biologifemini · 27/10/2018 10:31

Have a look at the NAS website.
I recently had training from them and they said that the 3 common features for anyone on the spectrum is: social interaction, eye contact and repetitive interests. If I remembered correctly!
The questionnaires used are ADOS, disco and CARs scales.

Biologifemini · 27/10/2018 10:32

Oh and diagnosis is multidisciplinary in that it isn’t just one person making the diagnosis but clinical psychologist and psychiatric/neurologists. So you will need to see different people depending on speciality.

siakcaci · 27/10/2018 10:39

Have a look at the NAS website.
recently had training from them and they said that the 3 common features for anyone on the spectrum is: social interaction, eye contact and repetitive interests. If I remembered correctly!

Far too simplistic imo.

The questionnaires used are ADOS, disco and CARs scales.

ADOS isn't a questionnaire.

Biologifemini · 27/10/2018 10:47

As I said I received training on this from NAS. It may well be simplistic but that was from them.
ADOS is a list of observations so I think you are being unfair. This is how autism is diagnosed within the NHS. It is better to direct towards Nice guidence and NAS then just provide subjective opinion.

Mormont · 27/10/2018 10:47

I've copied and pasted the contact details for the integrated autism services that are up and running: CARDIFF & VALE NTEGRATED AUTISM SERVICE
Launched on 27th September 2017, the service is available and the contact details are below:
Integrated Autism Service
Avon House, 19 Stanwell Road, Penarth CF64 2EZ
[email protected]
029 2182 4240

CWM TAF INTEGRATED AUTISM SERVICE
Opened on 5th March 2018, the service is available and the contact details are below:
Cwm Taf Integrated Autism Service
Cwm Taf Local Health Board, Admin Block 1 Ysbyty Cwm Cynon, New Road, Mountain Ash, Rhondda Cynon Taf CF45 4BZ
[email protected]
01443 715044

GWENT INTEGRATED AUTISM SERVICE
This service is now available contact details below:
Integrated Autism Service
Units 10 & 11, Torfaen Business Centre, Panteg Way, New Inn NP4 0LS
[email protected]
01633 644143

NORTH WALES INTEGRATED AUTISM SERVICE
Launched on 27th June 2018, the service is available and the contact details are below:
North Wales Integrated Autism Service
Greenfield Business Centre, Unit 80 -81, Greenfield Road, Greenfield, Flintshire CH8 7GR
[email protected]
01352 702090

POWYS INTEGRATED AUTISM SERVICE
Launched on 17th July 2017, the service is available and the contact details are below:
Integrated Autism Service Powys
Erwood, Bronllys Hospital, Bronllys, Brecon, Powys LD3 0LU
[email protected]
01874 712607

siakcaci · 27/10/2018 10:48

I've heard that these days the NHS don't 'accept' private diagnosis and won't put it on your medical records without an NHS evaluation and diagnosis. No idea if that is true nationwide but I believe it was told to a friend of mine, by her GP, a few months ago.

I often hear conical won't accept it for funding children in education, but never heard of the NHS not accepting it. They don't need to though, most of us just want to know

Doorrunner · 27/10/2018 11:09

Thanks mormont for the contact information.

Honestly, I wouldn't care if NHS accept it or not. Truth be told I probably wouldn't even tell my own family (as awful as that sounds!) Blush I just need to hear it for myself. I can't even explain why. Closure perhaps? I just want a professional to tell me I'm autistic and not just a bloody wierdo.

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Biologifemini · 27/10/2018 11:12

I don’t think the NHS won’t accept a private diagnosis. They will just want it to be from people who are appropriately trained. And not just one persons opinion. It is rare for any diagnosis to be made by one person imfor any condition. It is pretty standard to have a team of specialities.
So you will need to be prepared to pay and check out the creditionals of the people doing it.

SputnikBear · 27/10/2018 11:19

If I was diagnosed would it have any negative consequences? I’ve discussed it with DM and she said don’t rock the boat because if I’m diagnosed as autistic then social services will start questioning my parenting and sticking their noses in to make sure I’m looking after DC properly.

FaithInfinity · 27/10/2018 12:13

I’ve heard in theory that the NHS won’t accept a private diagnosis. I appreciate it is probably different for children looking for funding or perhaps if you’re applying for PIP but whenever I’ve disclosed, I’ve never been asked to ‘prove’ it or where my diagnosis came from. This includes me disclosing to my NHS employer.

Doorrunner · 27/10/2018 12:19

I've often wondered that sput. I don't think it would affect the likes of your parenting by any means and I think SS would only step in if they had substantial reasons to do so.

I do think about things like mortgage applications or things like health insurance, especially under 'anything to declare' part. Maybe I'm over thinking it.

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cariadlet · 27/10/2018 12:38

I'm going through the NHS at the moment.

I went via my GP. I pretty much expected him to dismiss what I thought (at that stage I hadn't read as much as I have since, so wasn't really sure myself), but he was lovely and was happy to make a referral.

I then had a questionnaire to complete and return to the GP. The accompanying letter warned of a long wait.

Since then I've had another letter confirming the referral. But in my area there's a 12 month waiting list and they've dated that from when they must have received my questionnaire which was about a month after my initial visit to the GP.

The letter says that I'll need to take a parent or somebody else who knows me well to the appointment. That's the one thing I'm a bit anxious about. I'd planned to tell my family after diagnosis or not to mention it at all if I don't get a diagnosis. I'm happy to open up to a professional, because there's more distance but I don't ever really talk about feelings, difficulties etc to friends or family. I prefer just to get on with things.

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