I have a question for all you late diagnosed adult.....

I had no idea that other people did not have the problems I had. I thought that most people just coped with them much better than I did. My camouflaging methods have fully integrated into who I am, 'unmasking' is essentially a meaningless concept for me. However, now I do not try to ignore my day-to-day problems, I acknowledge that they are real and rather than ignore them, I try to avoid making them worse.

So did I. But the state school systems tended to think that any form of neuro divergence Limited achievement. In their minds intellectual giftedness and And autism could not coexist. It probably wasn’t until the mid-90s when that notion started  to catch on in educational circles. And even when it did catch on there was still basically no provision to support those who fell into that category.

Martin said:

I was only diagnosed because I realised that I was autistic and sought a diagnosis. I had not realised that I was autistic before this, because I had no idea what autism was really like and I had always just about managed to cope in society

This is a statemented clone of myself. I had some weird stimms as a youngster. Reasons for them never were persued. Had they been persued it was likely for a misdiagnosis anyway. I was able to mask my stimms later on

Martin said:

I had no idea what autism was really like and I had always just about managed to cope in society.

Exhausitive masking throughout most of my life got me through it all until my realisation that I was autistic forced me into getting a diagnostic confirmation when I retired at age 76.  My focus on work allowed me to cope. After retirement that's when I became conscious of  my autistic symptoms.

I think quite a few reasons, some that others have already mentioned. 

I think the long period of masking became harder to manage the older I got. Also though knowing why things were difficult also gave me permission to avoid things I struggled with in the past. I never really liked having people coming to fix things or install things at home, but now it leaves me exhausted, maybe that is due to age and over time having less resources to recover.

I lost some of my support as people died. Also a lot of changes to manage both in personal and work life. 

The pace of life has greatly increased and how things are done. I used to keep important details neatly stored so if I needed to contact anyone I could find them. Now most things are done via the internet with passwords and my brain struggles to cope with all this and technology in general. Even getting a new washing machine was challenging, instead of a simple dial and clear instruction booklet you have something with a mini computer that can easily go wrong and is much harder to figure out 

COVID brought another change, not only wondering if we would survive, fear of having to go to hospital, but also removal of a lot of things we were used to and resulting change. 

Maybe you just accepted your "oddities" until you bumped into the one that you couldn't cope with. Without my autism resulting in medical phobias, I'd have gone to my grave never knowing. 

Looking at some of my deceased relatives, I suspect some of them did.

"Wierd" and "quirky" were labels I accepted and didn't give an s- word about until the medical meltdowns became life threatening.

Thanks for you share.  I have often thought the same having been officially diagnosed 7 years ago when i was 43. Looking back it seems obvious now that the signs were always there. I have Aspergers or high functioning autism as they call it now.  My parents are still alive and I think they feel guilty or are still in denial.  Looking back at my childhood, I think i masked it very well and found ways to get around challenges.  Anything out of the ordinary was put down to behavioural issues and I was punished or it was put down to me just being me and I needed to find ways to prevent re-occurrences or deal with it. It was a case of fight or flight and often to avoid confrontation I used flight and would just take myself away from situations.  I think unless the neurodiversity had very obvious and recognised traits, it often went unnoticed and was branded a behavioural/parenting problem, especially 30+years ago. The question of autism was only raised by my now wife who has experience of working with autism and only after we started living together. I guess in a more relaxed environment it became more obvious, especially when spending so much more time with someone and the environment being more relaxed, one where i no longer felt I needed to impress or put on a front, or act in a specific way in a specific circumstance.

The other thing that I have recently discovered that can maybe explain why it was not picked up sooner, is that my symptoms were amplified when alcohol is involved. Drinking didn’t really kick off for me until I went to university. Alcohol would impact my quality of my sleep, my ability to recognise when i am getting anxious and generally reduce my self awareness, which in turn would not necessarily trigger the coping strategies I have developed. Not living with parents, house shares that regularly changed or living by myself meant it was just me, so who would really be spending that much time with me to recognise autistic traits. I quit alcohol last year and since then, although I still have many challenges, not least one of my daughter's who has just been diagnosed, I am able to deal with them much better and there is far less frequent dramas to deal with.

These are just my thoughts on why I was not diagnosed earlier which I thought I'd share

That and in my case sometimes a sense of loss / grief over what might have been if I had been diagnosed when I was 18 or 21 say instead of 50. It doesn’t last long - there’s no point crying over spilt milk - but I do feel that way occasionally - normally prompted by discussing my life history with someone be it a new medical professional, friend, etc.

Just wanted to say this is very normal. I think all of us who are late diagnosed have had some or all of these feelings and experiences.

This is one of the reasons why one of the most important set of skills parents can teach their children is problem solving skills. You can’t avoid problems in life but the more and stronger problem solving skills you have the less likely you are going to be depressed by them.

The best illustration of the effect of stress I have seen is it’s a bit like walking closer and closer to the edge of a cliff as you get more stressed. If you don’t do something - exercise is good - to de stress and move further away from the edge of the cliff, then eventually you will walk over the edge of the cliff and fall. While the fall doesn’t have to kill you it’s unlikely you are going to escape unharmed.

Your understanding of depression is certainly original and not one I have come across before or agree with.

My understanding is that depression is a coping measure for some people when the find themselves in a situation which they can’t cope with and don’t have the knowledge, skills, support etc to get out of. Basically instead of coping the body just says I can’t cope with this and shuts down.

I’m not even sure I agree with Mother Theresa. One of the problems with depression is that other people can’t stop you being depressed - the only person who can stop you being depressed is yourself. At some point therefore something must have changed in her thinking for her to get to the other side of it or she would still be in it. (Unless I suppose the circumstances which caused her to be depressed changed drastically)

The people who survived the Holocaust were not the best and the brightest. The people who survived were the most adaptable (or luckiest) and people who could still function despite the ridiculousness of the situation they found themselves in.

Most people who have been seriously depressed come out of it bitter and disillusioned. Bitter that no-one helped them even though no-one could have helped them and disillusioned that despite having been seriously depressed they then still have to continue to suffer all the things that life brings. If they are not bitter and disillusioned then personally I question how depressed they really were.

If you are interested the best book I have read on depression is A Man’s Search for Meaning by Victor Frankl. Frankl was an Austrian Jew who survived the Holocaust and his book was written shortly after the war. (A lot of what I have written above paraphrases Frankl)

From my understanding the key knowledge is learning about our capacity for growth, where our limits sit and if they're healthy boundaries (appropriate responses emotionally) and if our instincts and work with reason at these thresholds. 

Now there is a point where on-going stress is not productive. Something has to change or the human spirit will break. "At a certain point, stress becomes toxic" https://news.uga.edu/some-stress-is-good-for-brain-function/

Clinical depression, though (and not misdiagnosed depression, which is common) is definitely something I'm not well enough read up on. The more original understanding I have is Depression as the opposite of the Will to live, the survival instinct. A mechanism responsible for helping the human body embrace decomposition, and return to the earth. We can only hope to be helped in this capacity and not struggle against death when the time comes. But I can't say I know more than this.

The thing is, we don't live in an easy time. Many of us have experienced moments or longer of a sense of desolation or resignation, hopelessness. And it's defeating. Mother Theresa talks about going through a time of feeling isolated, lost and it wasn't that she did anything to get to the other side of it. There are dark nights of the soul, and so many others who talk of these journeys. Perhaps they were all periods of depression. But the world today is too much for too many, I do know that. x

“Stress and hardship is where we learn much about ourselves” Possibly but I’m not sure how you do it if your reaction to stress and hardship is clinical depression.

I don’t know how old you are or how your autism affects you other than these two posts but I’m slightly surprised about your comment that back then they still equated autism with a lack of intellectual potential. (I can certainly believe they equated dyslexia with lack of intellectual potential unless you are younger than I think.) I wasn’t diagnosed as autistic to the age of 50 but still managed to get a first for my degree.

10-15 years ago, lighting really started changing from natural sources (filament heat inside halogens/incandescent) to far more unnatural lights: CFLs, LEDs. And while Fluorescents have been around for a while, they were usually tempered in shops or locations with natural lighting. For those of us with light sensitivity, it's become increasingly difficult to drive at night, go out at night, deal with shops without natural light. The change in society is forcing a biological response in those who feel attacked by these changes. And since covid, most public transport and station toilets have these installed lights which are absolutely blindingly painful.

Society is changing and it isn't helpful for those of us with very sensitive sense-perception. There's also a noticeable change in sociological structures in the west. The guardian just released an article about behaviour at concerts: https://www.theguardian.com/commentisfree/2023/sep/14/behaviour-music-gigs-live-shows?CMP=fb_gu&utm_medium=Social&utm_source=Facebook&fbclid=IwAR3duCI9Ba-AZDryy2lnRdIJkJ_6i4dhn7gipz314BqgMXSNOgAMjMERuuI#Echobox=1694683181 I'd even be inclined to say there's an Americanisation of the West changing fundamental values on the whole. Humans can be easily influenced by what they're exposed to. To an extent. 

So as you've been growing up, the world has been changing in ways that I believe are become much less easy for autistic thinking and being to inhabit. But, there's a few other factors. One is Autistics mature slower due to language differences. We don't use vocabulary as a fluid representation which is subject to change. In fact, we often rely on words having a stable function or underlying interpretation, and when they don't can be accused of being too pragmatic or worse, pedantic.This difference has an incredible impact psychologically on how most create Defence Mechanisms, which are an aspect of 'civilised behaviour' one matures into. If we were raised with good values in a supportive environment which didn't change, we may have felt acceptance to some degree, perhaps we were 'quirky but kind' and when peers have the time to get to know someone with - even middle class values, let's say - one might not think much of your differences. 

But when there is sudden change, transitions in life, a great many things which once were overlooked may suddenly become noticeable. When I was younger I was taught that stress and hardship is where we learn much about ourselves. Or as one mentor said, the dark room is needed to reveal the image. 

Aimeelou1992 said:

I’ve just started a new job and this job is the first one I’ve gone into letting my mask down a bit, and requesting adjustments but then I have a hard time understanding what a reasonable adjustment is, and if they say no I take it super personally. My manager is very nice but try’s to be your friend as well as your manager and I’ve found it really difficult to understand boundaries with her, which has caused me a huge amount of stress

This books should help you understand a lot more about these dynamics and unspoken rules - it isn't comprehensive but explains enough to make life an aweful lot easier for us:

The Unwritten Rules of Social Relationships - Decoding Social Mysteries Through the Unique Perspectives of Autism - Temple Grandin, Sean Barron (2005)
ISBN: 9781941765388

Thankyou for your kind words :) 

It’s been a rollercoaster of emotions for the last 2 weeks trying to navigate my way around this diagnosis. It’s like I’ve been grieving in a weird way. That sudden realisation that I have spent my whole life trying to fit into other people’s expectations.

Before my diagnosis I thought I had pretty decent social skills but have realised I have good skills on the surface, but deep down there’s a real lack of understanding. I’ve just started a new job and this job is the first one I’ve gone into letting my mask down a bit, and requesting adjustments but then I have a hard time understanding what a reasonable adjustment is, and if they say no I take it super personally. My manager is very nice but try’s to be your friend as well as your manager and I’ve found it really difficult to understand boundaries with her, which has caused me a huge amount of stress. I can unintentionally be a bit inconsiderate and self absorbed, especially when under stress and not understanding the expectations, which I feel terribly guilty about. In some ways I feel it was easier to mask, but at the same time masking is what has caused my declining Mental Health.

It’s crazy how this diagnosis has made me really look at myself and realise so many things. There’s a lot that makes sense now! 

It has been nice to come on this forum and find people I can actually relate to for once. Not being able to relate to others has been a big issue for me. Even when I did have friends, there always seemed to be some kind of disconnect. It’s been exhausting. 

I probably would’ve been diagnosed much much earlier had I been in school bbut I don’t know if they would’ve caught the autism as well as the dyslexia after all they caught that at 13 anyway.

i’m not sure that would’ve made school any kinder though. back then they still equated autism with a lack of intellectual potential. I’d have been so frustrated in a special school being taught remedial material I’d probably have burnt it down.

Being homeschooled probably had a lot to do with the late diagnosis. There were massive issues every time I was in school up until the point which I went to an adult community college at 15 at which point everything was fine.

put me in school and demand I sit through a dull lesson and deal with children who just won’t connect with and it’s bedlam. I’m bored and bullied. when I’m bullied I bully back, that includes anything I perceive as bullying from the teachers too. That’s why all in all I was only in school for about maybe two or three years throughout my entire childhood. Once around four or five and once around 13.

The first school wanted to refer me to special-needs but it was before special-needs was good. At a time when wad were still a fair amount of stigma associated with it and back when a lot of it was just glorified babysitting and my mum was not at all comfortable with the idea. Second school they insisted that I be tested for special-needs and then as soon as they determined that I had them (dislexia) dropped me.

Hi Aimeelou1992

Thanks so much for your lovely post. 

I am in a similar boat to you - I am 35 and was just diagnosed maybe 2 months ago. It's all new to me too. 

I was a very content child, I think, but coming into later child years and certainly early teen years I began to have issues. A lot of the issues I had were with my 'mental health' I put that in inverted commas, because we probably know now that I wasn't mentally ill, I was a traumatised little child who needed help. 

I think growing up you just have to learn to cope to a degree, to fit in best you can at school, etc. It's really hard and maybe you feel quite alone, but we got through it. 

I was diagnosed with ADHD when I was 30 and autism recently and it all just makes a bit more sense. I also have a parent who is clearly (yet refusing diagnosis) autistic, and a sister with rampant ADHD. So that makes the pattern clear! 

Well done for making it this far and please don't feel sad or lost, we're all here and we're all nice :) 

Yes, though many pairs of identical twins exist where both are autistic, there are statistically valid numbers of identical twins where only one is autistic. Therefore, a purely genetic cause is not supported.