Experiences of those who lived without diagnosis for some time

I am atypical in many ways. I told my work place, a couple of days after being diagnosed. I wondered afterwards if it was a good idea. They had known something was up as I was in a mess and was visiting psychologists. They were worried about whether I was ok 

It has not been a problem as I found several other people are ND. It's the type place that would attract them. It is quite quiet and most people are quite reserved.

It has helped saying something. I have a bit more leeway now. I get get the same work done, but I don't get pressured which helps to get it done. 

We do some odd stuff and small teams of a few eccentric types helps.

Professor Precise-a-bug said:

My working live has been a series of disasters.

Professor Precise-a-bug said:

If I had understood myself better when I was working I might have been able to avoid some of the mistakes I have made. 

Me too. Retiring was the best thing that happened to me. Very sad about your wife - but what wonderful memories you must have.

Yes, thankyou! Congratulations :) Sometimes it feels like an aditional/unnecessary layer has been added to problems. I don't mind problems or working things through but things rarely seem smooth or comfortable. I am hyperfocused too, but this seems to be swinging towards my own interests more, and increasingly working alone. I am a bit cynical of equal opportunities as this (however they dress it up) does also limit others expectations of you. In terms of masking I would say my use is light, or it may be deeply embedded now in who I am (from childhood) Things towards my late teens/twenties became increasingly difficult, when before that point they just flowed. I was surrounded by primary people (family) and I could do almost any thing myself. I still can, but its like doing it with a hangover or waking up after a 20 year sleep, I feel impaired but my mood on the right day can bring me out of this. Its just that Iike the weather I am not in control of it from one day to the next.

Hello! I was diagnosed this July (late middle age). As far as I'm concerned, my relationships, friendships and careers were already affected all my life, so the diagnosis was my answer. I think my partner doesn't accept it.

I've only asked for adjustments a couple of times and am keeping the diagnosis mostly private. I get what you say about jobs; that is still a major one for me. It is so ferocious out there now that there is no way I am mentioning neurodiversity. It would make it too easy for them to pick someone else over me. The way I see it, if I've fooled them, I've won. If they want to give me war, bring it on.

Ride the rollercoaster. Accept the uncomfortable feelings. I don't feel I'm qualified to give you tips, but in my last temp job I threw up strong hints at interview stage, i.e. "My strengths are that I'm hyperfocused and just want to get on with the job". Also, take companies' windowdressing with a pinch of salt without being too cynical, ie. policies stating "We accept candidates of all types, blah blah, neurodiversity, blah blah."  Toughest of all, accept that you have to create a work persona. Even some NTs struggle with this and it took me decades to accept. Think of it as protecting yourself. You take off the armour at the end of the day, you thank it, but you know it's just armour and not necessarily falsity. Someone going into battle doesn't think of their helmet and kevlar as 'false'.

That might not necessarily be the right advice, though (it just works for me, sort of).

I socialised with younger than my kids at uni, they were much more accepting and less judgemental than many of the older adults, we had far more in common than I had with the people around my age.

I loved the work too, I spent xmas in my final year researching my dissertation, just me a cat, a pile of books and some nice food, it was great, one of the best xmas's I've had.

That was the reason for me too, being undisturbed in the library. The socialising aspect is very hard. I remember that at the age not knowing what those new uncomfortable feelings were. 

I loved the academic side of uni, I loved nothing more than sitting with a stack of books and my laptop in a quiet corner of the library and working through my assignments and my dissertation but as with most things, the social side was a struggle and I used to get so anxious and panicky sat in lecture theartres. 

Reality: I mean completely necessary to things you need to do; earning a living, having healthy relationships etc. Feeling comfortable or that you are genuine being yourself with people in situations. Being around others is an Important barometer of reality because you are not in total control of those parameters. Or walking down the street, anything within reason might happen outside your control. The masking is like a complex, an extension for me anyway perhaps from preconditioning not being able to totally fit in.

Define reality? 

I think everyone masks to a certain extent, we all have a slightly different persona when at work, to at home with trusted people, or we mind our P's and Q's with older family members and don't talk about certain things with certain people.

I think what interests me the most, is why those of us ND's feel we can't unmask to ourselves or have to conciously mask or unmask, it seems that NT's do it unconciously but we can't. Although I guess some NT's can't either depending on thier family circumstances. I think we do everyone a disservice by presuming that only ND's mask, masking is something that seems to have come up a lot recently in ND circles, no one's talking about how to integrate masks and allow them to just be a part of who you are, but instead we think of them as a problem and I'd like to ask, are they really?

I first shared my thoughts that I might be Autistic to my wife, but she shot down the notion saying “I’ve seen kids with Autism, you don’t have it.” Then I got tested and was diagnosed with it and my wife still was adamant I was not Autistic. It took me telling another family member and that person saying “Oh, that makes sense” for my wife to finally do research and realize that I was right. Now she’s extremely cooperative with my needs, for example helping me avoid crowds when we can or giving me more grace when I don’t talk to family enough at get-togethers.

My diagnosis led to my daughter getting a diagnosis, which was absolutely necessary. Had I not, we would probably just assume we’re terrible parents for somehow raising a child to be so impulsive and sensitive. Truth is it’s not ours or her fault.

I took an assessment to give me an idea of how much I mask, I think it is minimal but it does seriously distort your sense of reality. 

I love this thanks. I was depressed and anxious a lot too but fought through it to get a masters and UG degree too.  I just remember late teens sensations becoming rather jarring - bright lights and sounds especially. 

I can relate to this as I too received discrimination at work in the UK. I worked in Central and local governments. I also discovered a couple of years ago that two employers had not been paying my national insurance pension so I had to prove this to the HMRC (your IRS). This was extremely distressing as I realised I had been exploited during the short time I worked for them, then made a ghost employee. Whether this is because they believed they could get away with this I can only speculate. 

I am pushing 68 and retired. My working live has been a series of disasters. So to has my social life. 43 years ago I was extremely lucky to meet a wonderful young woman who fell in love with me without reservation and has stuck to my side like a limpet. Between the two of us we were a whole that stood firm like a rock in a raging torrent. That was until three years ago when she was diagnosed with very early onset vascular dementia. I am now a widow in all but legal sense. A couple of years ago I met a teacher who told me I am ADHD and probably Autistic. I am presently seeking an Autism assessment to help negotiate the rest of my life. I have suffered a number of discriminatory events that were caused by my not behaving the same as the rest of the population. 

I do not offer advice, but for me it is a matter of understanding myself. And learning how to negotiate social rules and get on with all those funny people who in reality are quite boring. If I had understood myself better when I was working I might have been able to avoid some of the mistakes I have made. 

Please do not feel inadequate for your condition. Us Autistics often see the world in a different way. I am the little boy who says, Mummy, why has the king got no clothes on? No mummy, he is stark naked. Seeing the world clearly is difficult unless you can find ways of saying what you need to without upsetting people so they stop listening. 

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Hello!

I was diagnosed earlier this year, I'm a 32 year old woman. I have a long history of anxiety with a side of depression from being a teenager. I'd always felt weird, had trouble fitting in, maintaining friendships and holding down a job. I'm academic, performed well in school, college and ended up with two degrees. 

I haven't revealed my diagnosis to my parents as I'm worried they will be hard on themselves for missing the diagnosis even though I don't feel that way, autism in girls was very poorly understood back in the 90s and early 00s. My partner was encouraging in me getting the diagnosis and I think he's along the same lines as me, in thinking 'oh this makes sense now'. I did inform my work and requested reasonable adjustments, I have had attendance issues due to stress and anxiety, they did not grant my reasonable adjustments which has lead to me resenting my managers and feeling very unsupported. I did tell my immediate team, four other women I work with, they were supportive and one responded with, 'Oh! That's why you get so stressed!' which was honestly so validating! 

In terms of myself, it's funny, sometimes I get imposter syndrome and think I can't be autistic, they must have made a mistake! Then I'll become really upset because a plan has changed unexpectedly or overwhelmed because there's a bad smell or jump out my skin because the bus made a whooshing noise or be talking to my partner and realize I'm not looking at him or have someone tell me a joke and stare blankly back at them because I don't get it and I think, 'Oh yes, you're autistic'. 

I do feel like I have a new lens to see my life experiences through, I think back to my childhood sometimes and a memory will pop up, for example, I remembered recently going to the shopping centre with my mum, she would want to walk through the food court to leave and I was always distressed and would refuse because it smelt bad to me, all different restaurants food combined, that wouldn't bother most people but to me as a young child it was overwhelming. 

My assessor said that years ago I wouldn't have been diagnosed as I'm 'high functioning' (masking as well) and the knowledge and awareness has changed. I feel more empathetic and understanding to myself for what I previously saw as faults. It has taken time and I'm not 100% there with accepting the diagnosis but I am glad I was assessed and diagnosed. There's nothing wrong with being autistic, my brain just works a bit differently. 

As with most other things I was out about my diagnosis as soon as I had it, I wasn't working due to other health conditions, so employers weren't an issue for me.

I can't be anything other than authentically me and I think hiding an autism diagnosis would be as damaging to me mentally as it was not knowing what was wrong, why I was so awkward, clumsy, socially inept and all the other things that make life difficult for ND's. It dosen't stop me being an intelligent, mostly kind (I hope), funny and generous person, if people can't handle that then I don't want them in my life, they're a drain and vexatious to my spirit.

The thing to remember is you're exactly the same person as you were prediagnosis with the same skills, interests, like and dislikes. I think us Latelings (those who were diagnosed later in life), need to push back against a society that pigeon holes to easily, we need to make others see this is a positive an extra to our lives not a negative ball and chain.

Thanks Iain, yes this (stigma) is what I meant. the societal understanding is outmoded. I see traits in familiar members too, fortunately one siblings is diognosed with ADHD and very open minded to this. Workplaces need more than general policies for recruitment/HR but also need to better educate staff and only recruit Ab on the basis that they accept they will need to work with everyone. So often it is people trying to make the workplace their own.

pietro_21 said:

I am at this difficult crossroads where who I reveal this too is a bit of a minefield.

For me revealing my diagnosis to my wife led to divorce after 24 years of marriage as she could not get her head around living with someone who was "mentaly ill". 

In spite of a huge amount of experience of living with me and knowing me, I became tainted once I had the label of mentally disabled.

Work also sidelined me quickly as they were reluctant to have a someone with autism in a customer facing role (they had lots of very high profile visitors where I used to hep them with the complicated audio visual meeting systems), changed me to be a consultant rather than permie and 2 years later ended the contract in favour of someone else.

I don't believe my behaviour changed post diagnosis but others perception of me did - I was seen as potentially problematic in spite of having a blemish free track record.

Family were not interested in spite of the fact I see the ND traits in many of them - again it is stigmatised so much they would rather sideline me than accept it.

Others have reported more accepting people but it is not my experience.