Updated: May 6
It’s the May bank holiday weekend. Like many people with social anxiety, bank holiday weekends are a hive of activity and a marathon attempt at trying to find things that provide us with space, quiet and some calm away from the crowds. So we often stay home, a place of privacy and at times sanctuary away from wider society.
So here I am this morning, sitting at my kitchen table eating my breakfast with J, both of us still in our PJs and taking a gentle start to the day until I catch a glimpse of something from the corner of my eye. I looked up and couldn't believe it, there was literally a man standing there peering at us through the window. My first reaction was shock, after all, seeing a stranger at the window isn’t something we often expect outside of horror films. What’s more is that we had no idea what was happening and not being fully dressed neither of us felt comfortable to go outside and ask.
After a curious call to the landlord, it transpired that it wasn’t someone coming to attack us, but a man cleaning the house. To many people, this may seem to be quite an usual thing, but we had no idea it was happening. For many of us with autism, unexpected social encounters are extremely difficult, but when one happens in the comfort and expected privacy of your own home it raises the question about privacy and how important this is.
It’s now 10am, the man is still here and I’ve made him a cuppa. I have no animosity towards anyone trying to do their jobs and after all, this chap has given up his bank holiday to be here today. The issue here isn’t the task he’s doing, his sudden appearance or the noise it is creating but ultimately we weren’t told and that’s the key problem here. When we are in our homes, we often encounter unwanted sounds, smells and interruptions that we don’t expect but what is often not considered is how distressing this is for those of us who are autistic. Most of the time we are expected to put up with the world and its wants, our own needs rarely understood and in the case of today, not respected.
Many people have a need for privacy, for many different reasons but for those of us who are autistic as well as living with social anxiety, this isn’t just a matter of privilege and luxury. It’s survival, away from the overwhelm of a noisy world that isn’t set up for us. So on a bank holiday weekend, when many people would have the option to get in the car and head out if an unexpected visitor arrived to carry out work on the house, those of us with social anxiety are trapped. Trapped between facing an outside world that is too busy or our home being invaded by the outside. The problem is that how we experience the world and its challenges remains misunderstood. All too often we are perceived as overly needy or difficult, our voices shut down. So from this experience that is happening here today, here are three reasons why privacy is so important for those of us with autism, and why we often have so little of it.
1. We often rent or live with family
Firstly, without bringing in vast stats or figures, we know that people with disabilities often live precarious lives, facing difficult choices between economic security and protecting our health. For this reason, it is often the case that many of us with severe social anxiety are unable to hold down jobs, relationships and access to a home often contingent upon what support is available to us.
Whilst some of us may live in quiet locations, many of us rent or live with family and friends. Of course, there is generally nothing wrong with either of these options, but for those of us with complex sensory needs, our sense of privacy and sanctuary can be blown apart by factors outside of our control. It can be as simple as a window cleaner turning up unannounced, or friends of your parents popping around for tea. These examples may sound fairly benign, but for those of us who are autistic and live with the menace of social anxiety, they can be disastrous.
2. Privacy comes at a cost
It goes without saying, privacy is expensive, we all know that. Whether it’s housing or other things in life such as where we can go on holiday or how we can travel, if we want to do any of these things with privacy we have to pay for it, and often through the roof. For this reason, many of us with social anxiety end up not being able to do anything as we can’t afford to. Going on holiday becomes an array of additional costs to avoid noisy neighbours or the sensory overwhelm of being in a loud and busy place with nowhere quiet to retreat to. We cannot just put up with a bit of discomfort to be able to travel, and we often cannot afford to upgrade to first-class or premium spaces to be able to avoid the crowds.
Many of us face these disadvantages, true enough, but for those of us with sensory needs, we cannot simply put up with the discomfort of the budget option. Our only choice is to spend big or stay home. More often than not it’s the latter, meaning that many of us who are autistic with sensory needs become excluded from living.
3. People don’t understand that our need for privacy is not about privilege
As I write this final section, I am staring at my screen with a loud conversation happening right next to me at the window. Right now I have no privacy, and I know that I cannot just go outside to escape it. Although I know it will come to an end, I don’t have the privilege or the power to be able to talk to my landlord and ask them to inform me next time this is going to happen. That would make things too awkward, too uncomfortable with us all living on the same site, and I've lived here for so long, it’s just not a risk I can take.
What many people don’t understand about the need for privacy is that for those of us with social anxiety, it is not about privilege. We don’t need to live in a big manor house, or holiday in isolated villas away from everything. Those things are luxuries, and whilst they are nice, it’s not what we crave. We just want to be able to live quietly in a way that doesn’t cause us shock, distress and the need to continuously run away and avoid everything.
If someone was to ask me what privacy would look like for me, I would honestly say that just a simple understanding of our sensory needs would go a long way. Had my landlords understood and respected the full extent of sensory overwhelm caused by a man appearing at my window today, perhaps small things could have improved this situation. Perhaps they could have asked the man to knock on the door first, or perhaps they could have called or messaged me to let me know that this was going to be happening? Outside of my own situation, maybe understanding what autism is and how social anxiety affects people would create a society where privilege isn’t such an aspiration, because people could learn to respect the needs of others in a way where privacy comes more naturally, without a price tag affixed.
The point being, is that as autistic people, we aren’t looking for status or to have something up on others, we just want to be able to live our lives in a society that is more open to who we are. One that respects the need for quiet, the need for less social interaction and overall privacy as a need and not a privilege.
Do you have your own story where your privacy hasn't been respected? If so what did you do?
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