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If you were diagnosed with autism as an adult please answer me this

14 replies

StrictlyAFemaleFemale · 10/03/2022 18:26

How did it make you feel?

I went to my gp 3 yrs ago and asked for a referral. She said she wanted me to talk to a counsellor about how I might feel if I was/wasnt diagnosed. I emailed one with what I thought was a crystal clear description of what I needed which he didnt understand. And then life got in the way.

I'm feeling the need to revisit this due to one of my Girl Guides being diagnosed. We've had some great chats and I mentioned that I think im on the spectrum (ds is diagnosed) and she said that I simply had to be assessed. So on the word of a very lovely 14 yo its back on my radar.

I trust autistic MNers more than an NT counsellor. So would you mind telling me how you felt when you were diagnosed? Both positive and negative.

OP posts:

LizDoingTheCanCan · 10/03/2022 18:42

The counsellor didn't understand because it's a ridiculous request (from your GP, not you). It's not part of the diagnostic pathway to have counselling for what the outcome might be. The GP was fobbing you off.

How did a diagnosis make me feel? Lots of different things. It gave me an understanding of my differences, it helped me relax and stop masking so much. But also cross and frustrated that I'd asked for help so many times, and been medicated and dismissed, rather than helped.


BarrowInFurnessRailwayStation · 10/03/2022 19:55

I was diagnosed at age 45 and it didn't come as a shock. It helped me understand myself more and I felt much better about myself.

However, I never received any post diagnosis support or anything at all so I've been unable to fully process the fact that I'm basically a different person from the one I grew up as and a lot of bad things happened to me, even into middle age, as a result of me being autistic. I've kind of become quite angry about it and have now turned my back on the world and on NTs, whom I will never make my peace with. It's very lonely and difficult.

I'm still glad I got assessed though. I've met some really nice people online and it's good to know that I'm not the only one who feels like this. I no longer feel like a weird alien.

I wish you luck with whatever you decide 😃


Clarice99 · 10/03/2022 20:36

I was diagnosed in my early 50's after repeatedly being turned away/dismissed by GP's so when I got the diagnosis, I felt vindicated.

I also felt disbelief/denial (even though I knew I was autistic). I had a lot of anger directed at so many people for having had a shit life as a child and as an adult. I've endured decades of being labelled a weirdo, being bullied, being isolated and excluded.

And finally I felt relief and acceptance of the diagnosis and of myself.

The diagnosis has allowed me to be much kinder to myself. It has also afforded me some positive reasonable adjustments at work and I have an autism mentor via Access to Work.

I don't regret going through the assessment and getting the diagnosis. I still harbor anger that the autism wasn't recognised sooner and that I was dismissed by so many medical professionals for years and years Angry


StrictlyAFemaleFemale · 10/03/2022 21:37

Thanks for your replies. They echo everything I've read on twitter.

I dont think my gp was fobbing me off. I think she wanted me to go into an assessment prepared for possible outcomes. She is lovely.

OP posts:

JohnMcCainsDeathStare · 11/03/2022 18:56

I think it's helped me to be kinder to myself and work with my limitations as well as to my strengths - only wish I'd done it sooner.
Thing is, getting diagnosed is a shitshow if you are apparently high functioning - I tried going down the NHS path but kept getting shunted into the Mental Health pathway instead.
Thing is my mental health was bad but since it was jobseeking-induced depression not much could be done about it.

I wish I'd done it earlier since my last bout of jobseeking was a shitshow - only really got a job though my contacts and reputation. I was an emergent leader in a new field of science but recruiters didn't give a shit about that and just because it looks like someone has it together doesn't mean they aren't struggling.

I payed for mine in the end but it was £500 well spent. Turns out I am slightly worse at reading emotion from people's faces than an NT male!
It was my DS's diagnosis starting school that set this ball rolling.


EnjoyingTheSilence · 11/03/2022 19:10

@JohnMcCainsDeathStare £500 wow, I’m paying 4 times that for DD’s diagnosis and it’s put me off getting one for me as I’m not sure how it would benefit me.

The more I’ve gone though the process with Dd, the more convinced I am that I am.


JohnMcCainsDeathStare · 11/03/2022 19:33

Ouch! I would still go for it although some places might not accept private diagnosis. I am trying to be more of an activist but it takes time to do it properly.


EssexLioness · 11/03/2022 20:40

I was diagnosed 4 years ago aged 40 and it has been life changing for me. Initially after the assessment I felt low and drained for a few days. It is quite a thorough process and involves talking through all your difficulties and challenges and how your life has been affected. I never felt like I fitted in anywhere and had poor self esteem from being ‘different’ and it felt upsetting raking all that pain up. It was also tiring talking about everything in depth. At the time it felt a bit like a character assassination (wasn’t at all, this was just my interpretation). I am a very caring person and it hurt to be told I often interrupt people/ don’t appear I’m listening - that upset me because I felt like I must be making those people I love feel uncared for. However, after some heart to hearts with my DH and a few days to process this I got over my guilt/ hurt.

Then over the next few weeks I felt this weight had been lifted from my shoulders. I felt free and understood why I was different. It wasn’t because there was something wrong with me, as I had feared for so long, I just processed things differently. I did a lot of reading and for the first time in my life I began to accept myself for who I am. I gained self esteem for the first time and instead of seeing all the ways I had ‘failed’ in life eg struggling to hold down any sort of job, I began to have a little bit of pride for getting through some of the struggles I have, with an undiagnosed disability. I recognised that many autistic people cannot work and didn’t feel alone. I also learned that many can’t drive and was able to feel proud that I passed first time and am a reasonably good driver. I also realised that I am highly likely to be dyspraxia too (often go together) t helped me accept my physical disabilities. I was bullied by my parents for things related to my dyspraxia/ autism and was able to recognise a lot of their hurtful words weren’t true and all my difficulties were perfectly normal. I am so much happier now and let go of a lot of my shame related to my differences. I am more open now about my quirky/ unusual ways and don’t feel the need to mask and hide my real self. I also don’t force myself to do things that make me meltdown/ I’ll with stress afterwards just because I felt I should eg going to big family functions which then leave me shut down for years. I am a completely different and very happy person now and wish I had been diagnosed years before


duvetdayforeveryone · 12/03/2022 07:48

Relieved. I finally had a reason why I was different to everyone else, and it is okay :)


DisorganisedAlways111 · 24/04/2022 07:09

I was diagnosed ages 32. It took me a while to go for an assessment. My wife kept saying to be about being autistic and I was annoyed with her for suggesting it. But I then began to realise she could be right. Mainly because of my difficulties at work, mainly because of the social communication aspect, then things just started adding up.

When I received the diagnosis my wife kept saying "well how do you feel now then?"
But I didn't really feel anything. I think maybe it started to sink in gradually over time? As someone else has said - I also didn't have any post diagnosis support which I think would have been helpful.

What has changed for me is I'm no longer hard on myself as much thinking "what is wrong with me?" I now realise my own limitations or the things I find difficult and try to make adjustments that work better for me now. Overall the changes I have made have helped me enormously. One being - going self employed. It works so much better for me.

Although I was reluctant at first, I am really glad I went for an assessment. That process was hard because my GP told me I 'couldn't possibly be autistic' because I had a job and a partner etc. absolutely ridiculous.
But I then found a psychologist who specialises in autism and has done for over 30 years, and then it went from there.
It was definitely worth it for me.


BlackeyedSusan · 24/04/2022 11:51

still processing a year and a bit on.

yes it is helpful. but it is very difficult to adjust.

the process is very difficult. it brings up a lot of things you did as a younger autistic person. and you need to concentrate on your difficulties. it is really hard work. I can see why a counsellor would help but you would need a specialist. getting a lot of support from those who have been through it is probably more helpful. you will get a wide range of experiences of what is normal because your experience will not be exactly the same as others and will not fit a specific pattern that counsellors may think.


WhyPaulMemory · 24/04/2022 12:00

Can only echo the above posters, it made me feel relieved. I was diagnosed in my late 30s, and a few years on from the initial shock (well , not a shock as I had suspected the truth, but having it confirmed in black and white) I feel more contented with myself than I probably ever have. I used to hate myself, wonder why I couldn’t do what ‘normal’ people could do (hold down friendships, get on in the workplace, etc), now I know the reason for it, my life makes so much more sense. I’m a little sad that I didn’t know sooner as it would have saved me a lot of self-loathing, but I look after myself much better now, and feel like some of my traits have actually lessened, probably because I’m not under nearly so much stress. Some people wonder what the point is of having a diagnosis when you suspect something is wrong, but for me the confirmation meant everything.


BlackeyedSusan · 24/04/2022 14:07

Different people react in different ways.

For me there has been a lot of omg I did what moments about being autistic in the past. It feels embarrassing. Can't change it and I need to give myself some understanding. I think it will take time to offer myself some understanding.

I pursued a diagnosis as I come across to professionals a bit different and they ascribe different meanings to it. Also it offers legal protection if you need reasonable adjustments.

It helps now with understanding what I can do. Giving me understanding that I need to rest and limit the number of interactions I do.


WanderleyWagon · 25/04/2022 10:45

I am in process on a diagnosis of ASD/ADHD at the moment (aged late 40s) and it's been a revelation so far (I am 4 months into it). I'm very very glad I went for the assessment. I was lucky enough to be able to go private, not because the NHS wouldn't assess me but because there's a long long waiting list and also, they basically wanted me to do a self-diagnosis document/narrative in order to get the referral, which is part of the difficulties I have because of the ADHD. It was such a relief to be able to just meet with the doctor and have them start and schedule the whole process rather than trying to diagnose myself.
Although the emotions it has brought up have been complicated, I think it's going to be really really helpful for the future.

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