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.