When Claire received her autism diagnosis at 32, she found herself grieving for the life she might have had. Not because she thought her life had been wasted. Far from it. But suddenly, so many things made sense. She could look back at her childhood, school, friendships and working life through a completely different lens, and she couldn’t help wondering whether some things might have been easier if she had understood herself sooner.
For years, Claire had been working incredibly hard to fit in. She’d learned what other people seemed to expect of her. She’d worked out which behaviours were considered “acceptable”, which things might make other people uncomfortable and which parts of herself were probably better kept hidden – and she became very good at it.
If you’d met Claire, you might have thought she was coping perfectly well. But inside, she was exhausted.
So, what do we mean by masking?
You may have heard the word masking used more and more when people talk about autism and neurodiversity.
Put very simply, masking is when someone hides, changes or suppresses parts of themselves to fit in with what they believe other people expect of them. And it isn’t necessarily a conscious decision. Sometimes people have been adapting themselves for so many years that they don’t even realise they’re doing it anymore. It has simply become their way of getting through the day.
For one person, masking might mean copying how other people behave or rehearsing a conversation before they have it. For someone else, it could mean making themselves maintain eye contact even though it feels uncomfortable, stopping themselves from making repetitive movements, or constantly thinking:
Am I talking too much?
Was that the right thing to say?
What should my face be doing?
Do I look interested enough?
Am I behaving ‘normally’?
Just imagine having all of that going on in your head while you’re also trying to get on with your day. It’s tiring just thinking about it!
The energy we don’t see
Imagine you’ve had one of those really long days. You’re tired, your head is full and you’ve simply had enough.
Perhaps tapping your fingers, pacing around the room or making a repetitive movement helps you to feel calmer and more settled. But somewhere along the way, you’ve learned that other people don’t like you doing that. Maybe someone told you to stop when you were younger. Perhaps people stared, laughed or made a comment.
So, you stop yourself. You sit still. You smile. You carry on. To everyone else, you look absolutely fine.
But you’re not just using energy to get through the day. You’re using even more energy to manage how you look while you’re getting through it, and that’s the bit we can so easily miss.
What does this mean in social care?
This is where understanding masking becomes really important for those of us working in adult social care.
Someone may appear to be coping really well. They may chat happily with staff, join in with activities, follow their usual routines and seem perfectly comfortable in a busy environment.
But what if maintaining that appearance is taking a huge amount of effort? What if, by the end of the day, they’re completely exhausted?
Sometimes we need to look beyond the question, “Are they coping?”
A much more useful question might be:
“What does coping cost them?”
That one question can completely change the way we look at someone’s behaviour.
Perhaps a person regularly goes back to their room after an activity. Rather than assuming they’re unsociable, or don’t want to join in, we might wonder whether they simply need some quiet time to recover.
Perhaps someone doesn’t make much eye contact. That doesn’t necessarily mean they aren’t listening or interested.
Perhaps they prefer to eat somewhere quiet rather than in a busy dining room. That doesn’t necessarily mean they don’t want company.
And, repetitive movements aren’t necessarily behaviours that need to be stopped. They may actually be helping the person to regulate themselves and feel safe and comfortable.
We don’t need to have all the answers
There isn’t a checklist that tells us whether someone is masking, and we certainly shouldn’t start watching people and deciding that we know what’s happening inside their heads.
Everyone is different.
What we can do is become a little more curious.
We can notice what helps someone relax. We can learn how they prefer to communicate. We can recognise situations that seem to take a lot out of them. And, most importantly, we can give people opportunities to tell us what works for them.
That is what person-led care is all about.
It’s not asking someone to fit comfortably into our world. It’s thinking about what we can change so that they don’t have to work quite so hard to be comfortable in it.
This Week’s Coleman Challenge
This week, choose one person you support and spend a little extra time noticing what helps them feel comfortable, understood and able to be themselves.
Ask yourself:
- What does this person do when they seem genuinely comfortable and relaxed?
- Are there situations that might be taking more energy than we realise?
- Are we expecting them to change or suppress something simply because it doesn’t look “normal” to us?
- Is there one small thing we could change to make their day a little easier?
You might not come up with an obvious answer, and that’s absolutely fine.
The point isn’t to make assumptions about someone. It’s simply to be curious, to listen and to get to know the individual a little better.
Because sometimes something as simple as a quieter space, a change in routine, a different way of communicating – or simply giving someone permission to be themselves – can make a huge difference.
Read more from our “From Awareness to Understanding” blog series here.