Adult ASD Diagnosis is Still Taboo

Lonely boat on an empty sea

If I were to tell you that I was suffering from post-natal depression, you may feel a little awkward about what to say. Some subjects in our society are still taboo and another person’s suffering is always hard to navigate.

When I lost a baby at 10 weeks, the people I told had mixed reactions. Some said they were sorry, some said they had been there too. Others gave me meaningless platitudes about how it was “for the best” or “not meant to be.”

No one’s pain is exactly the same as the next person’s. Even when we share our sorrow, grief is an isolating experience.

When disclosing personal details about yourself, it is a given that you will not always receive the reaction you hoped for. There are so many things that separate and divide us: religion, or lack of it, gender, sexuality. It is hard to offer up something intrinsic and intensely personal, when you do not know how others will take it. I understand that. Some things are hard to talk about. Sometimes it is hard to know what to say.

But, overall, I hope, people’s reactions are becoming more compassionate. Awareness grows every day. There are brave people who talk about how they feel, who connect with others, who make them feel less alone. Whether you are fighting your way through something difficult and painful, or discovering something about yourself and you need validation and support – there are those fighting in your corner. There are those who speak up, so that you may stay silent, if you choose to. You can also raise your voice with theirs, if that is what you want to do.

Neurodiversity pins

I think I have concluded that I am an autistic adult. The realisation came slowly. The seed was there, before I had my son, but it was brushed aside, dismissed. I was too social, too eloquent for it to be a possibility. Then, as my awareness and understanding grew, so did the seed.

It would take too long to explain the myriad and complex reasons that led me to this understanding. Suffice to say, I had always put my problems with anxiety, interpersonal relationships and executive functioning down to general personality flaws. If I clearly displayed ‘obsessive’ interests, burnouts, inappropriate emotional reactions and a total inability to let anything go, I never really linked the dots, or labelled them as such in my mind. They were just my problems, my challenges.

My “not giving a f*ck” button was completely missing, as my dearest friend has always said.

But, through raising an autistic child, and devouring every scrap of information about autism that I could find (those obsessive traits can be so useful), finally, I started to see. A psychologist agreed enough to give me a full referral.

There is a long wait to get a diagnosis, but I have tentatively told a few people that it is likely that I am autistic.

And I have been met with…. silence.

Mostly silence. A few ‘Oh’s. A few people who have carried on talking about autism but as if I had not added my own neurodivergence to the conversation. One person said, “I am sorry.” It is embarrassing and awkward. On social media, the only reaction I have had is for people to ask what difference it makes, ask what the point is in labelling myself at my age. It will not change anything. Most friends and relatives, save the closest, have a similar perspective. There are raised eyebrows, unspoken scepticism.

You have got by for this long. What does it matter? It will not change anything.

But it does, you see. It changes everything. I am not weak. I have a different kind of strength. I am not unlikeable. I am misunderstood.

I am not broken. I am neurodivergent.

Talking about this is not comfortable. Usually, writing comes easily. It is a pleasure – or at least a cathartic release. It takes no effort, no bravery, for me to write. My heart spills out onto the page. It is harder to keep some things to myself than it is to share. I have always had trouble gauging when to stop, with knowing how much is too much.

But not this. This has brewed for months. This has been deleted and reworded, revived and killed off a hundred times. This is HARD.

Because no one will know how to react. Some will not believe me, will think this is self-indulgent. Mostly, I expect silence.

There are others, out there, feeling this. But at the moment their voices are too few, too quiet. They may not feel like they can speak about it. They may tell friends and relatives and be met with silence,or disbelief. People do not yet understand. This is still taboo. They stay silent and feel alone. I do not know what the answer is except to be brave and hit publish.

So, this is my voice, for what it is worth.


Talking about the taboo of an adult autism diagnosis

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32 thoughts on “Adult ASD Diagnosis is Still Taboo

  1. I’m glad that you’re embracing your neurodivergence. It’s a huge relief to find out everything we thought was “all in our head” actually has a name. I can connect you to other women who received adult diagnosis if you’re interested. One, in particular is a dear friend. Good luck to you on your journey of rediscovery.💐✨🌈

    1. Thanks ever so much. I have a long time to wait before assessment but I think just accepting the idea myself is already being helpful. Thanks so much for your support 🙂

      1. Hi. I couldn’t see how to respond directly to your post so have piggy backed this one. What you wrote was touching and brave. You are incredibly eloquent and, if this is the right thing to say, im happy you have a diagnosis. It can make sense of confusing thoughts and give you peace that all is actually well. I love reading your posts even though our worlds are different. You are an amazing Mum and I feel humbled by what you do. Know you have many friends and supporters out here. Amanda

  2. You’re not alone! Publishing and openly talking about being autistic has introduced me to a lot of silence, minimalisation, and dismissal, but you can’t imagine how many others have privately messaged or spoken to me about feeling such relation to my stories.

    You’re a voice that someone needs to hear, and although there will always be those who are disappointing in their reaction, there will be those who share great relief in learning about themselves. Learning that they’re not broken, or a freak, or weird, or just “not like other people.”

    You won’t get silence from me, you’ll get a fist pump ✊

  3. I think this is a really positive move for you and hopefully having this confirmation will help you to make sense of lots of things that perhaps weren’t so easy to make sense of before. I disagree with those who wonder what the point is, and I also dosageee with the person who apologised to you as if it were something to be sorry for. As humans we spend most of our life trying to find ourselves, get to know who we are, how we work, what we want etc – a diagnosis for you will be so important and SO helpful.

    I have often wondered about certain things with myself, and it had crossed my mind at times with my son but the one thing that always made me change my mind is that as a baby/child I spoke really well really early, and so did my son…and everything I read about autism always talks about delayed speech – even in high functioning autism….so perhaps I’m really just a bit of a socially awkward and anxious person who doesn’t always get it right in knowing when to stop, is overly sensitive and emotional and finds it a bit harder than most to make friends….and reading that back I realise how much my son is like me!

    1. Thanks so much for commenting and your support. The idea that autism always comes with delayed speech is a myth. I spoke well and early and so did my son. His vocabulary was placed at the level of a 4yo at his 2yo check. Delayed speech is a feature with lots of those with asd but not all. In fact, some autistics have something called hyperlexia too, where they can read and understand language very early but sometimes struggle with speech. And you can speak eloquently and have an extensive vocabulary but still have hidden communication difficulties. There is a generation of women out there who are undiagnosed because many assume they must have language delay to be autistic – myself included. Hopefully through persuing this I can dispel a few myths about HFA, as well as understand myself a little more. Thanks again 😊

  4. Thanks for hitting publish. You are right – that takes courage.

    I have this post, sitting loudly, in my draft box. Not this exact post, obviously, but the same topic.

    It calls me to finish and interrupts everything else. My other posts wait impatiently, but I stare only at the heading of one.

    I stall. I stop. I hide away. I focus on plugins and widgets and fonts. I lose hours reading about typography and testing different font pairings only to return to my original choices.

    The post I was due to publish two weeks ago sits in the shadow of this other post. It is eclipsed. I do not move forward. I bake instead.

    My silent, but persistent, anxiety stirs uncomfortably. Any demands, real or perceived, threaten to overwhelm me. I shut down.

    I am probably autistic too.

    There I said it. Maybe, finally, I can write again. 😉

  5. Thank you so much for commenting and for being brave enough to say this. I was a few minutes away from unpublishing this yesterday because I was worried about the response and then a few messages like this made me stop. It really does make a world of difference. xx

  6. I hope that having a way to define and explain, the things that make you different (and unique and special, but also struggle) helps you accept the wonderful person you are. I hope that this new self understanding, helps you build strategies to cope when things are hard, to be kinder to yourself and your perceived failings. To celebrate who you are, and your many strengths.
    I’m not going to say “I’m sorry” – I think “Congratulations” seems much more appropriate. So a big congratulations for me, for this big step on your journey to discovering yourself.

  7. This is a lovely post, heartfelt and true.
    The silence is one thing, the arguing is another. I have been in arguments regarding this topic. If the topic had been , “I feel I am gay,” nobody would argue it. I would be commended for bravery, or met with a change of subject. But the arguing. It’s the worst part. More gaslighting, it seems. Thank you for this.

    1. Yes, I agree. I have not experienced it that much (yet) but I did want to kind of imply in the post that it is not really fair – that other things are given more patience and understanding these days. But I did not want to be too confrontational about it. But I really do think attitudes need to change. Thanks so much for commenting.

  8. Hi there, your post really resonates with me. I was diagnosed almost six years ago and what I expected to be ‘the end’ point was only just the beginning. I have felt very ‘unseen’ and ‘unheard’ by most people I have disclosed to and am only just beginning to gather a sense of identity post diagnosis. I’ve wanted to blog myself yet continually find I stall, think it’s fear … so well done you 😊

    1. Thanks so much for commenting. I am having mixed reactions (as I expected) but knowing I have given voice to something others are feeling makes it worthwhile.

  9. “Not weak” and “not broken” are two of the biggest things I’ve been trying to internalize. I told my therapist at one point I was realizing I’m not weak at all, that instead I’m “hella strong”.

    Good luck.

    1. Me too. It can be tough some days, especially when there are so many people who dismiss the above. Good luck to you too.

  10. I too have an autistic child and I think it’s reasonable to question if this was passed on genetically or not. I have many traits all of which could lead to a diagnosis of autism. However I don’t think I am in the true sense of the word Autistic. I have high anxiety, resist change, feel more comfortable in my own company, few friends, find eye contact uncomfortable etc. There is the argument that autism is currently being over diagnosed. I tend to agree as it seems to be a buzz word in parenting these days. I think to seek a diagnosis can be a way of trying to explain the flaws in your personality and make you feel less responsible for the things you may not like about yourself. I’m not autistic I have pretty big social anxiety issues. However it would probably make me feel a whole lot better if I could blame it on being Autistic.

    1. I do not question if autism is passed on genetically or not. It obviously has a huge genetic component. I’m so sorry that you’re blaming yourself so much, you must have had a lot of negativity in your life for this to be your internal narrative. I hope your child grows up feeling less contrained by ableist views and accepted for who they are.

      1. I didn’t mean to imply that you have questioned a genetic link like I do I just feels it’s natural to wonder. I plan to have more children and therefore it’s an important for me to understand if a genetic factor plays a part. I love my child completely (I hope you werent suggesting otherwise) but if I could remove his anxiety, need to self harm, and give him a voice then I would do in an instance.

  11. I loved reading this, as I’ve been waiting for a follow-up on your “Am I Autistic” post. I’m sorry to hear that you’ve been met with so much scepticism. Despite that, I sense that you feel a great relief in coming to realisation of your own autism.
    I’ve had similar thoughts myself. There are so many things, when I look back… so many ways I was different as a child. I learnt to read when I was three, I got on better with adults than other kids, I always ended up screaming and crying at my own birthday parties as I got overwhelmed… etc. I don’t feel the need for seeking diagnosis for myself, not at this point. But I follow, with great interest, those of you who do pursue diagnosis as an adult. xx

  12. Thanks so much.I definitely do feel a great deal of relief…and I am starting to give myself more leeway, be kinder to myself, rather than forcing things because they are what I think I should do. I hope it is the beginning of feeling much better about myself. x

  13. I too find that I communicate at my best when I write. Similar experience to yours. The way we were raised and in the community in which I was raised, words like autism never crossed our paths. Only really when I started pursuing answers to my own son’s behaviours did we as a family start understanding each other. My son was diagnosed in 2016, and I started pursuing an official diagnoses in 2017. It is liberating when you find the language to better describe the why’s of your needs. Thank you for sharing your experience.

  14. Wow. What an incredible piece of writing. I don’t think there is enough education out there for adults, but especially children who seem to pick on those with ASD. MY younger brother is 12 with Asperger and he has an awful time in school. He gets picked on to no end, simply because he can’t adapt to social situation and to him everything is black or white, right or wrong. He doesn’t seem to understand feelings and so comes across as very rude sometimes.

    I felt a lot of different emotions reading this post. Thank you for sharing

  15. I was diagnosed last year, having “hidden” for 41 years. Being treated differently without knowing why. Having a sense that you are different, without understanding why. The understanding that comes with the diagnosis, that I can start to understand myself. The feeling of lost years, of if only I knew, what might have been different.

    I have told friends and family. It has ranged from disbelief, through to my favourite, “I always thought you were, that makes so much sense, are you getting the right support” all in one breathless sentence, followed by a long list of my strengths that made him think that.

    I have yet to find the strength to say this on social media. I am scared of the reaction. It took me months to re-evaluate my memories after the diagnosis, I cannot handle explaining it all to people.

    This post has made me emotional. My journey since I was diagnosed has been one of self-discovery and trying to find me; not the mask I have hidden behind for so many years.

    Best of luck with it all.

  16. hi. I am an autism sibling i.e my 3 younger siblings are autistic. theres a high chance my father is too, but he is not diagnosed. i feel similar to you about finally joining together the dots as we get more information. i have always thought i can’t be autistic as my family would have noticed it, but i am beginning to think the reality is that i am also on the spectrum. i have made an appointment with the hope to be referred. one thing i want that i think you will understand is to still be seen as myself and as positive and relevant. the stigma of autism as inferior and euphemistically “special” is all too real, and being honest, i think avoiding diagnosis has led to me being treated better than i would otherwise. i worry (unrealistically) that if i get a diagnosis that my life will be taken away from me, made different and seperate from the real world because of the label (careers especially, how can i work in social care with a disorder often seen as lacking in empathy??). but i think it still needs to be done because it is the truth, and the reality is that the stigma needs to be fought, even if it is hard and scary. thanks for your relateable, brave, and commonsense content as always. you are a cool person and sound like a great parent. thanks.

  17. Quite literally going through the same thing, though I get a lot of anger from family members who refuse to read the literature to fully understand. They call me dramatic, and attention seeking. There are few things in this life I find sadder than deliberate ignorance. Thank you for posting this, I have been putting off making an appointment with a psychologist for months due to conflicting emotions.

  18. “I think I have concluded…” shows the uncertainty that still surrounds this question. Some of my own behaviour – and you don’t get to the door of 70 without making mistakes – would be consistent with this diagnosis. But not all of it. We are responsible for what we do, and our actions have consequences.

  19. I just received my official diagnosis 2 days ago… I am 42 years old. It feels as though my brain has been unlocked and I cannot wait to start the rest of my life.
    Thank you so much for writing this. The earliest comments on this post are from over a year ago – I hope you’ve had a chance to see a specialist by now? Wishing you every happiness ❤️

    1. Thank you. I got my formal diagnosis in April. There is an update if you click through to the most recent posts on the blog. I am so glad that diagnosis has helped you so much x

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