Why sm i so angry that i was diagnosed as an adult and not when i was younger

i was diagnosed at 29 with autism, i have reached the anger stage of acceptance, i am not sure why i am so angry i think it is because if i was diagnosed earlier i may of received the help i needed at school and people would of treated me differently instead of bullying me, i went my whole life being bullied for being different, i also have fibromyalgia now so that doesn't help, i struggle to make friends i just keep myself to myself and do my work, does anyone have any advice, how did you feel when you were diagnosed later on in life. 

  • Back in the day, the Catholic Nuns would have run the hospitals (properly) and their role was one of total dedication (vocation) and not “just a job” as that was the mindset, which resulted in far higher standards of care, not the kinds of attitudes we see today - indeed before they were pulled out of the health services, the Nuns were very close to recognising autism as they saw it as their moral duty to provide the much higher standards of care that is so lacking today 

  • I wasn't diagnosed until I was 60. 

    I suspect that you're angry over missed opportunities. I know that there are some things that I woud have done differently in my personal life as well as my career if I had only known that I was autistic. Sadly, things are what they are and no amount of anger will change the past. You have the option to change the present as well as the future depending upon the decisons you make in how you'll conduct your life. 

  • I also felt some anger when I realised (without being diagnosed) that I could be autistic. For me, the anger was because I had spent a lot of my life trying to fit in with other people, copying what they did, "working" to do what other people just did naturally... and realised it was all for nothing, everything I did never paid off and it never would. Half my life gone and what had I to show for it? That led to a lot of confusing thoughts and emotions. It did pass eventually, because the next emotion I felt was depression (not acute depression, but a general feeling of "what's the point?"). And eventually that passed too with time to acceptance.

    I'm not an expert on psychology or take a huge interest in it, but I do occasionally think about it now and again, I suppose because psychology tries to define rules for how and why people think, which I find helpful. I have noticed, however, that the "7 stages of grief" doesn't just apply to grief, but any significant change in someone's life where they must process and finally accept an outcome. This applied in my situation too, because it took a long time to process and understand what this meant for my life, and I also went through these stages until I came out the other side happier that I felt I had a real identity now.

  • I’m sorry maybe my post sounds like you shouldn’t complain at all, no, you have full right to feel what you feel, but better don’t let these feelings totally overwhelm you. If you have a therapist maybe it’s a good idea to talk about it. 

  • This is a very sad story! In the story I red the man was sent to some special care and there had a terribly abusive “therapy” something “new” at that time, it was supposed to treat the autistic behavior, some Finnish doctors brought it to my country. His mother could not forgive herself sending him there. She was promised wonders but instead her son returned traumatised. I’m happy I didn’t end up like this although I also had heavy traumas in my childhood and youth. 
    I hope that our experiences whatever they are will be heard and will help next generations, I hope next generations of autistic and other neurodivergent people will be better understood,  treated with respect and included. Once I had an interview with one lady she is doing studies about self diagnosis. I told her exactly this thing - hope to help future generations. 

  • I was going to put something similar, so I'll reply here instead.

    I was in an online autistic group session a few weeks ago. A few of us were moaning that we'd been diagnosed late. Then a 20 something woman who had been diagnosed age 6 went on to describe all the problems she had. Her treatment by her family after sounded pretty grim and she ended up in care. There were other very sad stories, and she is only just turning her life around now. Her story stunned the rest of us into silence and we didn't complain any more that day. I'm not really sure what my point is - but an early diagnosis certainly didn't help her.

  • I’m in middle thirties and although at the time when I was a child, knowledge about autism was much less advanced than it’s now, I was picked by teachers. Because of my mom I have never been assessed. Now question, is it bad? For some reasons - yes. I grew up thinking, that I’m inferior, failure, with low self esteem I was also suicidal. I used to hate myself. This is bad. Now question, would it be better if I got diagnosed in my childhood or teens? Not necessarily! I red about some people more or less my age, who got diagnosed with autism as children and send for “therapies”. These therapies turned out to be abusive and traumatic to the point that these people till today as adults are processing this trauma. It was also very much possible that I would have received no help at all, as many people I even here report no support after receiving dx. I was treated by my family like stupid, I was always told I’m gonna fail etc. I rebelled out and studied logistics anyway, I’m not sure if I have had enough courage to fight for my future if I had this kind of attitude “I’m disabled so I can’t achieve anything”. This is wrong thinking but my family definitely has it, even though they think I’m not autistic, just weird. 
    there are various possibilities of what could have happened if… but for me the best option is to appreciate what I have. 

  • Was autism recognised when you were a child? Was it thought to be only the most extreme cases that were recognised, you're not that much younger than me. How can you be treated for something that no one knew existed?

    I'm not sure about the '..moral law' or the 'underpining religious beliefs' are that you speak of, I'm guessing it from your Catholic faith, perhaps you could explain the intersection between recognition and care for ASC and morality, particularly in a Catholic context in more detail?

  • At age 54 now, the fact that I was never diagnosed until later in life with autism until 2021, not in my childhood in the 1970’s or my teens in the 1980’s, is to me a moral and ethical issue - and many of us are beginning to realise since Covid that our governments, public health bodies, healthcare professionals and others have all let us down, have failed in their ethical and moral obligations to us in our childhoods and have raised serious moral questions about medical ethics regardless of the culture of the time, regardless of the underpinning religious beliefs - it perhaps also explains why there is so much focus on children’s autism and why there appears to be an effort to do better for future generations, however this effort must go much further and current attitudes and mindsets must continue to be robustly challenged at every level, as leaving people behind is not acceptable, and is gravely immoral - whether we like it or not, we are all subject to the moral law 

  • Like Cat Woman, I also couldn't have been diagnosed as a child as I didn't realise I was on the spectrum until I was in my fifties and there is no help for us older people who have managed to get by all our lives.

    It may be that the pain you are suffering is causing anger too, sometimes life just doesn't seem fair. Is there anything the medical profession can do to help with that?

    Just try to be yourself, you may have to work out what that is, but you'll get there.

    Take care of yourself.

  • To answer your question: because you choose to be.

    It might not feel like a choice but effectively it is. You feel this way because you don’t choose to feel something else. And you perhaps could. It’s far from easy, but you might.

    I find that trying to develop a sense of mindfulness about my own neurodivergent life is a useful tool. When I’m getting frustrated or angry or anxious I try to remember to stop myself and take note that it is often my choice to feel this way, or rather to let myself continue to follow what is my default neurodivergent behaviour. Sometimes, as a result, I can choose to change that behaviour. Sometimes I can’t, but even then, realising that helps.

    Its a bit like “Yeah, we’re going to do this anxiety thing, but it’s because my mind is behaving divergently’.

    Also, when you reflect on what’s happened in the past, try not to seek to place blame too much, either on yourself or others. Things happened and they cannot be changed. They are now a part of your story so try to accept that and build on it. There are usually positives you can build on. You suffered through an undiagnosed autistic childhood. That means you are strong. You’ve been diagnosed as a young adult. That means you have a large part of your adult life ahead of you to build on that strength. You’re managing a health condition, so you’re a coper. I wonder what else you can do?

  • I tried to reply but added a link to a company that really helps with fibro called Crystal Star (dot com). Check out their website if you can & products can be ordered through iHerb to the UK.

  • I know kids who get bullied because they're autistic, sometimes I wonder the same, but then also wonder if I would've kept from things in life. As it stands, it seems there's very few out there who actually realise what the differences are and why they matter.

    On the Firbro note - I've found taking hormone balancing supplements most of my life have really helped. I've gone off and on various ones and have noticed a difference. Would recommend Crystal Star, starting half dose to see if it helps. They're available in the Uk through iHerb https://uk.iherb.com/search?kw=crystal%20star but their website helps recommend which might help. 

  • I understand your anger. I wasn't diagnosed till I was 62. By which time much   irreversible  damage had been done. It's far from easy  but I have to live with how things are, as opposed to how they could and should have been, to the best of my ability.

  • It will get better, how are you doing with the fibro? Being in pain all the time dosen't help you to navigate autism thats so new for you.

  • Hi there, also welcome.

    I'm 46 and was only diagnosed this year, I've spent my entire life lost in hopeless depression as a result of feeling isolated and alone, only now am I starting to find strategies to cope.

    A large reason for this was being fired from my career job for "gross misconduct" which felt so incredibly unfair and disproportionate. I couldn't resolve that feeling because it never made sense to me, I continually was asking myself WHY?.

    Now though, that whole incident 16 years ago makes perfect sense when viewed through an Autistic filter. My actions made perfect autistic sense, it was the most effective choice in the situation.

    I think having a diagnosis back then would have saved my job, and I would have a radically different life to what I have now. Maybe better.

    I think it reasonable, like yourself, to see our misunderstood past, and all the anguish and unhappiness which could have been avoided as a result of a better society, with anger and frustration.

    As I explained during my daughter's final meeting at her highschool before she left for homeschooling (as a result of school not being able to provide a safe and nurturing space for a neurodiverse person). I consider now, 2024 the same for the NeuroD as it was for Gays during the 1980s - although technically it was against the law to discriminate, society, underpinned by a discriminatory culture, allowed gay people to be degraded.

    How could a 1980s school control homophobia when Del Boy on Only Fools and Horses was making jokes about "poofters" the night before?

    So sadly, I think we are the martyrs who have to have childhoods badly effected by ignorance so society can move on.

    I honestly think it is moving on - keep strong sister Muscle tone2 Muscle tone2

  • I should add that therapy is often recommended after a diagnosis (it might be listed as a suggested action for your GP in your report, as it was in mine), and could be useful in respect of processing your feelings.

    You might find it helpful to borrow or buy this book, which includes discussion of various types of therapy and counselling, together with advice on choosing the right therapist or counsellor - all from an autistic person's viewpoint. Several of us here have found it very helpful, myself included:

    The Autistic Survival Guide to Therapy

    In my case, based on the book and my past experience with CBT (which didn't work for me), I'm currently having post-diagnosis counselling with a neurodivergent counsellor.

  • I can relate. I'm just a few years older than you and was diagnosed at the end of last year. I've been feeling pretty frustrated that it wasn't picked up earlier ever since. I do think my mental health would've been a lot better if I hadn't been misdiagnosed for so long, and therefore having incorrect treatments. I defiantly get stuck on 'what ifs' and think about how life could've been better if I'd have known sooner and was able to get the help and accommodations I needed.

    We've been talking about radical acceptance in therapy recently and using this skill to accept what has happened and move forwards. I'm currently working on this but not quite there yet Sweat smile

    I'm trying to concentrate on the fact that I know now and so can put things in place that will actually help moving forwards. Also to focus on the relief of knowing why I have the difficulties I do and for them to finally be acknowledged.

  • Hi! Welcome to the community and congratulations on your diagnosis!

    What you've described is very common, especially among us late-diagnosed autistic adults.

    I felt the same at the outset (including the relief you mentioned) - and my experience has been that these stages aren't necessarily rigidly structured. I'm just over one year on from my diagnosis and I still feel lots of different emotions about it at different times, still including some backward-looking anger, frustration, and grief.

    Even just this morning, I remembered another situation from my past, about which I now feel freshly frustrated and embarrassed. More recently, though, the balance has shifted towards more forward-looking thoughts. But it's still a journey. 

    You might find this related NAS article helpful:

    NAS - How will I feel after receiving an autism diagnosis

    There's a whole bunch of other very useful information, too, covering the After diagnosis stage of our journeys, including:

    • Talking about and disclosing your autism diagnosis
    • Emotional support for family members after a diagnosis
    • Formal support following an autism diagnosis
    • What can I do if formal support is not offered or is not enough

    NAS - After diagnosis

  • xx when i was first diagnosed i felt relieved but then angry all at once, im struggling to make friends and go out for coffee with people that want to spend time with me, im in allot of pain all the time and i just feel if i was diagnosed 10 years ago i would be a different person but io guess all these years of masking didnt help either  

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