If you’re autistic and were diagnosed as an adult, why did you choose to get a diagnosis?

[adotonthespectrum]

Wondering if it changed much for anyone to have it on paper or if there’s anything I haven’t thought of. The colossal wait times are putting me off asking to be referred but also think I could benefit from some reasonable adjustments at work, or at least the option to request them if I need them. Thank you ☺️

So I could fully understand myself and yes so I could ask for RAs if necessary.

Thank you. How long was the process?

Everything my children were going through resonated with me. Perhaps this is the reason I didn't fit in, that I struggled, that I didn't understand the world. Nothing has changed I am still me with the same struggles but I understand it now.

I was diagnosed aged 31. I had a lot of MH problems and I was seeing various teams under my community MH services. One psychologist I saw mentioned that she thought I showed signs of autism and referred me for an assessment. It wasn't a surprise to me as my DS is severely autistic. I didn't particularly choose to get diagnosed or need to request an assessment, it was simply referred for me based on my presenting behaviours.

I've found it mostly useful from a financial and admin point of view (I get PIP at enhanced rate with no face to face assessment although I had got it anyway for MH issues before the diagnosis), Disabled Student's Allowance and other adjustments for studying. I'm not able to work and it would make no difference there.

I was diagnosed earlier this year, in my late 30s. I was told there was a 3 year wait, but was assessed after about a year on the waiting list. For me it's been really helpful in understanding myself, looking after myself and not mentally punishing myself for not being able to function like a 'normal' person (eg I only work part time, I can't drive, I struggle with housework and executive functioning, struggle with social stuff etc) it's a relief to stop thinking negatively about myself.

Also for me personally, getting diagnosed helped start to heal a lot of childhood trauma (my parent started working at a special education setting when I was 10, and since then has teased me about being autistic, but didn't do anything about it even though they had access to a diagnostic team...) I declined having parental involvement in the assessment and did the whole thing myself. I found it really empowering to reclaim autism for myself, as a way to take care of myself and know myself better.

Because my constant struggles to do normal “adult” things that other people seemed to do with ease were smashing my self esteem to smithereens. Hold down a job, make sensible dating choices, make friends… I was constantly torturing myself by replaying my social mishaps in my head.

I completely forgave myself the day I got diagnosed. My head became a calmer, clearer place without the constant confusion at why I didn’t fit in or what I did wrong, I stopped trying so hard and just became myself, previously I was a chameleon. I got reasonable adjustments and workplace coaching and went from having 3/4 jobs a year to staying with the same employer for 8 years and getting promoted. I have genuine confidence. I met my husband and could be my true self around him and make better judgements about our relationships.

Life is still HARD, this world is not built for me and I struggle to accept this sometimes. But ultimately all the best things in my life are part of my journey as a diagnosed autistic person and simply wouldn’t have happened without diagnosis, it was lifechanging.

Also, having a definite diagnosis has helped me find a bit of community, at work there's a neuro diversity steering group that I'm in, which is a good place to vent and ask advice, and try to influence work to be more inclusive.

I haven't tried applying for benefits because I think I'd be deemed too 'high functioning ' to get any, but I do have a disabled bus pass from my local council 😁

I was diagnosed at 40, in a job that a lot of people think isnt compatible with being autistic (I talk to people all day) I went private for a screening, after working with young women who were diagnosed after being misdiagnosed with other things (eg personality disorders, OCD etc) and feeling I was getting a bit attached to the idea.

Oddly enough I went for a screening because I wanted to rule it out - I thought I might have 'traits' and get some advice/signposting. Person who did the screening told me they thought it was highly likely I was autistic, so I decided to go for a full assessment.

For me it's helped me more than I expected, I no longer pressure myself to try and 'do better' at certain things like having enough social energy or fitting in with extroverts. I lean into my hobbies instead of being embarrassed about them. Also I had a poor relationship with my mum growing up, she was quite neglectful, and although I could never be sure, with hindsight I think she may have been autistic too which has helped me feel a little bit kinder to her (she passed away many years ago)

If it's an option that's open to you I think it's worth it. There's no post diagnosis support in my area unfortunately, but the assessor gave me ideas for strategies for certain situations and I've since found peer support online too.

I have an assessment next month and I am hoping it gives me the clarity and peace that some of you have found. I'm not in a good place at the moment and really struggling. I'm not sure how a diagnosis will help - or what I will do if I do not get the diagnosis.

@OutOfSyncWithReality I hope it helps you find some peace. For me it was a process- for the first 6 months I was hyper aware of other things I found difficult and constantly asking “is this autism?”, rather than it being some kind of magic bullet. But as the support fell into place and I started to get comfortable with it and talking to people about it, I realised it was a positive to be able to understand why I struggled, explain to people why and utilise the internet and online communities for suggestions of things that helped.

It took around 3 years but we did have covid in the middle.

I'd suspected for a while, but one too many awkward incidents with friends pushed me to get assessed in the end. I went private, it cost me around £1200 in total, but I saw it as an investment. It was during covid so it was all done online.

I'd always had trouble fitting in, making friends etc, and confirming that I'm autistic has helped me understand why. If I do or say something weird or find that I can't cope with too many different sounds all at once, I know why that is and I know it's not my fault.

Like others I'm what used to be called high functioning, I have a full time job, own a flat, etc, and don't really need anything in terms of adjustments, my main issues are around social interaction.

My DH got a diagnosis this summer aged 45, it's been a great help to understand our relationship dynamics. I have felt very rejected by his behaviour in the past, I know that has a different meaning now and I can read it differently. So it has definitely increased positive communication. We take the time to really speak about our inner experiences now and their differences.

On the other hand it means certain things will likely never improve between us so there is an element of coping and learning to live with that.