Masking and why it’s so hard to ask for help

Struggling to ask for help, being unable to express our needs for support and adjustments, and even accepting help and support when offered, can be extremely difficult and often debilitating for many autistic people. Recognising a need and then finding a way to express it to another person requires a complex set of cognitive, emotional and communication skills.

I’ve been aware of this in relation to my son for many years. It’s only more recently I’ve been able to recognise it within my own life. It is crucial that the people we deal with – our children’s teachers, carers, doctors and therapists; our own employers, teachers, colleagues, friends and family – understand that we might need support, even when we don’t ask for it or realise we are in need of it.

Masking, the conscious or subconscious act of presenting as ‘fine’ when we are not, can mean that we miss out on the support we need. It is often when we are most in need of support that we are least able to communicate our needs. The effort of maintaining the mask uses up all our resources, and the fear of collapse or meltdown in public, at work or school, strengthens our resolve to hold it together.

We mask and hide our difficulties for many reasons. Unmasking and revealing ourselves can leave us vulnerable, highlighting our differences and how fragile we are. If we are able to get the right support and be able to drop the mask our lives are improved. But effective masking means other people don’t recognise we need help and support, and without help and support we can’t lose the mask.

As a parent I have experienced the impact of lack of support for a masking child. As my son progressed through primary school he slowly became more adept at holding himself together and hiding his struggles and difficulties during the school day, resulting in massive meltdowns at home. Because school couldn’t see the problem it didn’t exist. Because he was unable to recognise or articulate problems he didn’t always get the support he needed.

I watched through the classroom window one day just before home time, in the final year of primary school. The class teacher and two teaching assistants were in the classroom. My son was pacing, holding his hands in fists with his arms stiff, his facial expression blank and rigid. He was obviously anxious (as the post-school meltdown proved) but they didn’t see it. I guess that if they’d asked him if he was ok he would have said he was.

A big problem has always been that my son’s verbal abilities and extensive vocabulary make it hard for many people to comprehend that he cannot verbally articulate his needs. Spoken language is just one element in effective communication. Good speech does not necessarily equate to good communication.

It is this discordance, between apparent verbal acuity and poor communication, which causes both me and my son the biggest problems in getting the support we need. Other people assume that our intellect and our vocabularies mean we can say how we feel and what we need. People accept our words, our ‘I’m fine’, as true and accurate, after all, we are notoriously honest, aren’t we?

Luckily, my son has had me, his dad and some excellent professionals along the way able to advocate for him. He is now in a school who believe me when I tell them how he really feels and what he needs, even when he shows no signs of distress at school. They recognise that how he presents and what he says might not reflect how he feels and what he needs.

As a seemingly competent autistic adult, I don’t have an advocate to help me get the support I need. I have to do it myself. When someone asks me how I am, my knee-jerk response is always to reply ‘fine’, even though I am mostly not fine. This is for several reasons:

  • I can’t find the words to effectively express how I feel.
  • I can find the words but I am worried that what I say might be misinterpreted by a neurotypical person.
  • I’m not always very good at filtering my thoughts and can easily come across as rude or aggressive.
  • I worry that my lack of expression and atypical non-verbal communication will counter the extent or urgency of my needs.
  • I worry that I won’t be believed. After all, I look fine, this thing isn’t bothering anyone else.
  • I worry that the thing which is making me not fine will be considered trivial and will be laughed at or not taken seriously.
  • I worry that if I start to say how I really feel I might make myself come across as awkward, unpleasant or too critical.
  • I worry that it will open the floodgates, resulting in losing control by crying or melting down.

And what if nobody asks how I am? If people assume I am fine because I look fine, how do I tell them I am not fine at all?

My health is something which is not fine. I have not visited my GP in years (the last time was by ambulance), despite a number of health concerns, because I cannot find a way to open the discussion. I avoid phoning to book an appointment because of my anxiety around making phone calls.

I do attend the dentist regularly because the check-up schedule means I don’t have to express or articulate my needs, I attend, the dentist asks direct and specific questions and acts on any problems. I can book a dentist appointment while I am there (in dentist mode), and choose a time and day which suits me and will cause the least anxiety. It would help if regular medical check-ups, like dental check-ups, were standard.

Work is perhaps the prime setting for masking as an adult. I have done it for years and, as previous posts have shown, it’s a hard habit to break. After many occasions when I have answered ‘fine’ in supervision sessions with my boss, even when I am not fine, I now try to use email to express my needs. I still go through all the worries I listed above, but I have learned to send the email anyway. I am much better at expressing myself in writing than in speech and I need to find ways to use this more effectively (in fact, I might even write to my GP!).

In contrast, I had an experience earlier this year which, though I didn’t realise at the time, was a perfect example of pro-active support. I was taking part in an event which was completely out of my comfort zone and realm of experience. I did not meet the woman who organised my participation until the event. Before and throughout the event she anticipated what I might find hard and supported me in a multitude of ways.

I’ve heard it argued that having support increases dependence. This is particularly the case with children who have 1-1 support at school. It’s commonly claimed that it reduces independence, providing a useful argument to cut support and reduce funding. When I look back on the event where I had that support, I realise that being supported didn’t restrict me, it empowered and enabled me.

Having someone supportive, to check in with, to keep an eye out for me, to mediate interactions and act as a guide, enabled me to do a big scary thing. What made a difference was not having to ask, just having someone who ‘got it’. This is what is missing for many of us autistic adults in our day to day lives, people around us who understand enough, who can see beyond the ‘fine’ response, to smooth our paths and help us negotiate obstacles.

With support we can do amazing things.

Thanks to Saskia.

33 thoughts on “‘Fine’

  1. Another great blog post, and quite timely too.

    Last week, I was in meltdown, curled up, hands over ears and sobbing.

    My boss came and asked if I was OK. Of course, I said yes.

    Why? As well as the above reasons, I think it’s partly a script. When someone asks how you are, you reply ‘fine’. Anything else requires actually thinking about and formulating an answer, cognitive work that I haven’t got the executive function to deal with at that time.

    ‘Fine’ is also such a subjective word. While I might be in meltdown, at least I’m not at the point of self-injury. So I convince myself I am fine really.

    Luckily my boss knows of my diagnosis, didn’t take ‘fine’ for an answer and we had a conversation about what was bothering me. She didn’t trivialise it, she believed me and helped me to sort it (thanks, CH, if you ever read this blog).

    And of course, I followed up with an email, just to make sure!

    Liked by 4 people

    1. Yes, I use ‘fine’ as an almost automatic response too, I can’t think and I know it will mean the person asking might leave me alone if I say I’m fine. What I really want is for someone to do what I need even though I might not know what I need!

      Liked by 1 person

      1. Great post. The way you broke down the reasons is spot on. I just wrote a draft post with the same title a few days ago – just letting it settle and need to edit. Not copying – I swear! It’s a huge issue to me and I’ve been thinking about it a lot.


  2. Excellent post. I find saying I’m fine and dealing with the issue myself to be easier than attempting to explain the problem, especially when I don’t even know what the problem is.

    Liked by 1 person

  3. This one resonated with me so much.

    I’m often not fine. I never say that. I stay cheery. I say optimistic things. I crack a stupid joke. My biggest fear is that someone will notice I’m not fine. That someone will notice that I’m different. And that my walls will all come crumbling down.

    When you described your experience of having someone anticipating your concerns, it made me yearn. what a difference that would make. How much more could I achieve if I had someone to intercept likely obstacles. What a different life I might have lived.

    The best health visitor I know, on our first encounter, asked me how I was. “I’m fine.” I said.

    She paused and said, “I’m going to give you a few moments and then I’m going to ask you that question again. Are you ready?” I nodded, “How are you?”

    “I’m not fine.”

    I need to learn to say it when it’s not someone perceptive asking the question.

    Thank you.

    Liked by 3 people

    1. Thank you. Yes, life could have been a lot easier and I think I might have achieved more and be more confident if I’d had support and perhaps just acknowledgment that when I did say I was struggling I was really really struggling.
      I always told the HV I was ‘fine’ but I look back and I wasn’t fine at all.

      Liked by 2 people

  4. So accurate and felt, I could identify with every word.
    Thank you, it makes it easier to understand myself…


  5. My local autism “service” made me chase everything up repeatedly, usually by phone, then wondered why they never heard from me. They’ve now dropped me from their service and as of yet don’t appear to have made the connection…


    1. You’d think they’d know better…

      I wrote a post for professionals called ‘Could do better’, I’m not technically competent enough to link it, but I covered that sort of stuff.


  6. This post is so great and so accurate. I can really relate to this. I constantly say ‘fine’ although another one of my favourites is ‘just tired’ because it can excuse many of my behaviour e.g. my lack of eye contact if I really don’t feel able to give it but people just think I’m tired and that’s why I’m not making eye contact but really it’s because my brain is finding it too painful today.
    Such a brilliant post and thank you for writing it. 😃

    Liked by 3 people

    1. I used to say “just tired” a lot, until I noticed that my young (later diagnosed autistic) son had picked up the phrase as a way of pushing away any kind of emotional distress. I tried to get a bit more honest about being upset after that!

      Liked by 2 people

  7. I often say ‘fine’, not because I am, not because I am unaware of how I feel, or uncomfortable with sharing it, but because so few people ask “how are you?” with any interest in the answer. Over the years I have learned that it’s a pleasantry, and actually telling them how I am is a breach of an unwritten social contract that makes people visibly uncomfortable. People ask: how are you? You answer: fine. An autistic person who has had to manage sense of shame at getting it wrong (again) that accompanies an unintentional overshare learns to be guarded. Also because there are others who will use not being fine as a measure of your shortcomings. Only people I share a close relationship with get an honest answer these days.

    Liked by 4 people

    1. Yes, very true.

      I do find it really hard to not answer honestly, and having a set answer makes this a bit easier, because, as you say, most people don’t really want a proper answer. When people ask ‘How are you?’ ‘Are you ok?’ etc it’s often more a social habit than a genuine question.


    2. This. People often aren’t actually saying “how are you”, they’re saying “hello”. So on top of having to figure out how you actually are, if it’s worth articulating, if this person is safe to share with, you also have to figure out if the person even wants an answer. Auto-replying “fine” is easier (and half the time has happened by the time I’m registered the question)

      Liked by 3 people

  8. I wished I realized what was really going. On in my sons mind. I think I understand now how tough it is to express yourself . I’m going to try to help him more. Thanks for enlightening me.

    Liked by 2 people

  9. So accurate, thanks for this post!
    Would share it but not ready to let people guess I might not be fine…


  10. Thank you. As it happens, you just helped me.
    I’m in a maelstrom right now, too much change (good change, but still!), too much vagueness.
    I’m sill not sure who to ask for help and how and why, but reading your post helped me focus at least on the overwhelm and understand it better. And breathe.


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