Adult diagnosis, labels and fears

I was diagnosed two years ago, aged 45.  Has my diagnosis helped me? Yes, I believe that it has.  Do I think that a formal diagnosis is for everyone? No, I don't.

I think you are right to concentrate on discovering which personal traits cause which limitations as a route to self improvement.  To me, the diagnosis "autism" is just a container which wraps some (not all!) of my problematic traits into a single word, which is sometimes a convenient short-hand to use when describing my difficulties - if and when I decide to use that label.

Has my self-image changed since diagnosis?  Emphatically yes, and it has been a good thing!  Even after two years, I am still discovering aspects of being autistic which explain repeated problem behaviours from the previous four decades of my life.  I have several "Eureka" moments every week about some aspect of my life which I thought I already had an explanation for, and which turns out to have a completely different explanation when viewed in light of knowing my autism.  This allows me to more correctly analyse my past behaviour so that I can identify coping mechanisms (and some people that I really needed to apologise to!)

None of this learning and analysis has come about because of formal interventions by autism professionals.  It has come about by joining autism communities like this one and exchanging insights into our actual, lived experiences of being autistic.  Now, personally, I have identified that I do need some professional help, and for that, I need to have a formal diagnosis.  This is not the case for everybody.

However, I have a question for you to ponder (apologies for the long lead-up).  Let's assume that you find yourself getting on very well with people on this forum, that their experiences resonate with you, and that you find their advice useful.  In that case, it would be reasonable to say that, diagnosis or not, your "syndrome" (commonly co-occurring set of traits) is a good match for the "syndrome" experienced by other users.  In a sense, then, you have self-diagnosed as autistic, whether you choose to use that term or not.  Would you be any more confident of avoiding the hypothetical negative sides of diagnosis if you discover that you are autistic in this way rather than by a formal diagnosis?

If you discover that you are autistic, by whatever route, you are still going to have to decide what to do with that information.  Unless seeking professional help, there are very few circumstances where it is mandatory to disclose a diagnosis or to "identify as" autistic.

Whether or not to identify our autism, or some specific trait, in order to explain ourselves or to obtain accommodations is a tricky subject for many of us, from what I've seen on various forums.  At the same time, it can be a perfectly valid explanation when an autistic trait leads to a particular difficulty - a lot depends on the audience and how savvy they are about autism.  At the end of the day, we have an invisible condition, so words are our only way to indicate a genuine difficulty.  For example, a wheelchair user does not need to explain to anyone that navigating a flight of steps is genuinely difficult for them, whereas my lack of eye contact can lead to people misinterpreting my behaviour in a conversation without either of us realising that anything is amiss (the "obvious" explanation is that I'm bored or don't care.)  I don't point out my autistic trait as an "excuse" for the conversation going awry - I make clear that I am pointing it out because I want my interaction with that person to be more effective for both of us, by avoiding a common point of misunderstanding.  Sometimes this works, sometimes not, but on the whole I think my social life has been improved by being more open about my behaviour.

Will your autistic traits become more prominent if you are diagnosed?  Yes and No.  No, because the genuine autistic traits are innate and largely down to neurology.  Yes, because what you discover may lead to a change in your behaviour.  Most of us late-diagnosed autists have got through life by "passing" - generating a facade of "normalness" which we project when we're interacting with other people.  After a lifetime of doing this, we often don't realise how much we're doing it, and more importantly, we don't realise just how much impact it can have on our mental health.  Recurrent "burn outs", leading to anxiety and depression are common, simply because the extra mental horse-power needed to pass is a huge strain, and we are in a sense leading a "double life" where there is so much of our true persona which we never dare reveal to anyone.

Lessening the amount of "passing" we feel we need to do can be hugely beneficial to our mental health.  So allowing our autistic traits to express themselves more freely, when we feel it is appropriate, can be a good coping mechanism to reduce chronic stress.  But from the outside, this may look like we have suddenly become "more autistic" to observers, and I have had this reaction from some people.  So the autistic trait is more prominent, but not because it has got worse or is newly acquired.  The skill is to learn when, where and with whom we can relax our "passing" without negative consequences, and how to take time-outs from it effectively for the management of stress (I have some way to go yet!)

To summarise, there is very little in the way of identifying problem traits and coping techniques that you need a formal diagnosis for.  In fact, even if you get a diagnosis, formal psychological assistance for autistic adults is almost non-existent anyway, and most professionals are not themselves autistic, so many actually have a pretty poor understanding of what we experience.  But you may inadvertently diagnose yourself with a high degree of confidence by using resources like this one.  So the potential problems that you raised may still need tackling anyway - something else for which such forums are indispensable!

Best wishes.

Thank you very much for your thoughtful response, Trogluddite. You make a good point, the formal diagnosis is not so important as identifying myself as autistic, and that's something that will happen (or not) at some point. It's like the king, who seeing through the window that the enemy army approaching, closes the curtains.

It's a very complex feeling I have that is keeping me from taking action. Part of it is fear, of course. Although I don't see ASD as something bad, it's a life-changing moment, it will have a big impact on the rest of my life, for good and for bad. There is also the fear of not being on the spectrum, and having to accept that all my limitations are my own and not because of something that is out of my control.

There is also a sense of futility. Long ago I read a story of a guy who was told when he was in his 40s or 50s that he was gifted, that he had a really high IQ. His reaction was to complain and consider legal action, because if he had known earlier he would have led a different, better life. I have lived my whole life without knowing if I'm on the spectrum or not, and so far I'm happy with my life. Depression was no fun at all, and probably many of the big things in my life, good or bad, could be explained through the lens of ASD, but I always came out stronger and I learned how to deal with those issues or how to take advantage of my skills.

And there is also a shadow of being a fake or a hypochondriac. I do share several traits, for example, I tend to think in terms of rules, I'm obsessed with patterns, and I'm socially awkward (or at least I feel that way). But it might just be some  social anxiety mixed with some high analytical skills, after all people tend to gravitate towards me, I'm warm and loving to everyone, and I'm quite good at reading people's intentions and feelings.

I wouldn't say what I feel is anxiety, though, it's more of a mental block or lacking the ability to process the situation. The other day, for example, we were having a quiet dinner party at home and our friends started arriving one by one. When it was only one person, I was sociable and chatty. With two, I was still ok. When a third person came in, I just disappeared into the background. I wasn't feeling anxious, I was still enjoying my time, but my brain just couldn't cope with so much interaction and I found it hard to know when I could step in or change the topic. It's true that I knew the first two guests better than the rest, but I was in good terms with everyone in the room, we knew each other for a few years now.

So yes, I know that in any way I reach my diagnosis I will have to deal with it. I also know that it's ridiculous just to hide and deny it. It's just that I'm feeling too many things about this, and I don't know if it's  even worth it considering it. If I have made it this far, if I've managed to overcome my own limitations in my own way, if even if I'm on the spectrum I don't feel like it has been a problem. If my perception of myself is just that I have some personality quirks that make me unique, and by being aware of them I can be, in some way, accommodating to my situation and others. If I don't feel it's a big problem, does it make sense to go through this process?

At the same time, I know naming things has helped me in the past. Calling myself an introvert helped me have a healthier social life. Calling my "constant sadness" a depression helped me overcome it. Now I'm facing a wall in front of me, one involving social relationships, and maybe calling it ASD will help me get past it, or maybe it will make it worse by knowing myself "different".

I'm just lost.

Hi again, Indecisive. The thing is, until you identify yourself as autistic, you will never know what the reaction is going to be. Like you, I have always been successful in getting over my difficulties but after the difficulties kept coming and coming, I had to know what was wrong with me. When I realised I was autistic, I was delighted, right up until getting the diagnosis 18 months later. My life had been on hold, more or less, in that time and I honestly thought that I would be delighted to get the diagnosis, at last, validation and all that. 

But the strangest thing happened. I don’t think I felt anything when I got the diagnosis, not even relief. I thought I was just going to get back on with my life now. Then the avalanche came, the tsunami of emotions washed over me and knocked me off my feet, to the point where I’m now taking anti depressants. But honestly, I still wouldn’t change a thing. It’s been more than life changing though, it has given me my life back. 

My reaction isn’t unique, but on the other hand, not everybody has this reaction. Some people get exactly what they were expecting. We’re all different. But I will say, that I no longer think of my ‘limitations’ as limitations, I don’t see myself as limited at all now. If I am limited at all, it is because of a society that is only just recognising and accepting neurodiversity as equal to neurotypical. 

Identyfying as autistic, is what has changed my life. The diagnosis, gave me the confidence to proceed with my quest, to play my part in this game called life by doing whatever I can to improve the lives of autistic people. 

So as has already been discussed, it’s not so much the diagnosis, it’s whether we identify as autistic. The diagnosis is of less importance and with the introduction of the Care Act, a diagnosis is no longer necessary to get access to care and support. It can be helpful but it’s whether you identify as autistic. You’ll know if you are or not. 

Hi again, Indecisive. The thing is, until you identify yourself as autistic, you will never know what the reaction is going to be. Like you, I have always been successful in getting over my difficulties but after the difficulties kept coming and coming, I had to know what was wrong with me. When I realised I was autistic, I was delighted, right up until getting the diagnosis 18 months later. My life had been on hold, more or less, in that time and I honestly thought that I would be delighted to get the diagnosis, at last, validation and all that. 

But the strangest thing happened. I don’t think I felt anything when I got the diagnosis, not even relief. I thought I was just going to get back on with my life now. Then the avalanche came, the tsunami of emotions washed over me and knocked me off my feet, to the point where I’m now taking anti depressants. But honestly, I still wouldn’t change a thing. It’s been more than life changing though, it has given me my life back. 

My reaction isn’t unique, but on the other hand, not everybody has this reaction. Some people get exactly what they were expecting. We’re all different. But I will say, that I no longer think of my ‘limitations’ as limitations, I don’t see myself as limited at all now. If I am limited at all, it is because of a society that is only just recognising and accepting neurodiversity as equal to neurotypical. 

Identyfying as autistic, is what has changed my life. The diagnosis, gave me the confidence to proceed with my quest, to play my part in this game called life by doing whatever I can to improve the lives of autistic people. 

So as has already been discussed, it’s not so much the diagnosis, it’s whether we identify as autistic. The diagnosis is of less importance and with the introduction of the Care Act, a diagnosis is no longer necessary to get access to care and support. It can be helpful but it’s whether you identify as autistic. You’ll know if you are or not. 

Thanks for your response, and I really hope you are doing better with the antidepressants. I'm going to write a longer post below as a response to the whole thread, the past few days I have reflected on this a bit and I'm in a different state of mind now, but I think my main problem was not understanding what a diagnosis (mine or a doctor's) would mean. I hear a lot the things that aspies can and cannot do, but not why they do it, why they cannot overcome it and how it is different from others. It's not the same saying, for example, "you are an introvert and you will prefer quiet places to parties" to say "you are on the spectrum and will never understand social life". It was that second sentence that threw me spinning for the past few weeks. I'll elaborate on this below.