I’ve been diagnosed with an autism spectrum disorder. Do I tell my manager? My children? My partner?
I have recently been diagnosed as having high-functioning ASD, what used to be called Asperger’s. It is helpful, as I approach 60, to understand why relationships, social situations and oral communications are so challenging for me, particularly in the work context.
But many seem to express the view that “everybody has a diagnosis these days”. Others remain discriminatory, so at this stage I’ve only told one person – a friend in the UK (herself diagnosed as bipolar). Do I tell a manager at work? My teenage children? My partner?
Eleanor says: It wasn’t until very late in my life that I realised keeping things private is not the same as keeping them secret. I think it’s easy to forget that, especially when it comes to mental health, where the value of “telling your story” is so well-publicised and the value of being private is – necessarily – invisible.
It’s natural to want to share our mental life. Talking takes a private, ephemeral experience and transforms it into something other people can see. It’s a way to get confirmation of what we’re inclined to doubt: that we’ll be OK, that what’s happening to us matters. When that works, it really works – in a conversation about the mind, a good interlocutor can make you feel like a gong that has not been struck until now.
But not everyone’s a good interlocutor. Most of us are pretty woeful. Not because we mean to, or because we’re mean, but because we’re not trained in what to say: we’re cliched; we project; we can’t tell in advance which well-meant platitudes will work and which form a barb that burrows into the other person’s mind. This can be terribly damaging, both for you, who might feel isolated and stung, and for your relationship with the other person, which can easily curdle in the resulting disappointment.
You don’t need to expose yourself to that possibility until you really feel ready. A hazard of our confessional culture is that we risk wearing our suffering on a badge – as though disclosing it is the only way to purchase legitimacy for our preferences. But you know your own experience, and you’re learning what helps: there is a nice feeling of straight-backed self-reliance in deciding that those things are legitimate with or without other people’s recognition. You can give yourself the feeling of acknowledgment that talking to others was meant to provide.
That’s especially true in the time just after diagnosis. For the next little period you’ll be rewriting what you know of your mind and your memories, and sometimes that means trying things out to see what sticks. You might find some terms or practices helpful now, but outgrow them in six months’ time. You might feel a rush of resonance in which everything seems explicable, and then find in a while that some mysteries remain. You’re allowed to develop (and settle) your relationship to this discovery before you let other people weigh in with theirs.
Of course, you can tell whoever you’d like. Close family and partners will feel slighted if you don’t tell them eventually, and if you’re lucky they will be wonderful travelling companions who’ll share a ginger beer and want to hear what you’ve learned. All I want to stress is that you don’t have to share right now for the sake of having shared – the goal should be whatever sharing brings you. If you aren’t confident just now of what that goal is, you can decide to be private instead. Learning your own mind is a very long journey – you don’t have to take on passengers until you’re ready.