Speaking an awkward truth

An autistic person can sometimes feel like the only person prepared to speak up and name the awkward truths, trying to get others to hear an uncomfortable message about the need for change. We’re likely the person who names the thing others are dancing around, or points out the elephant in the room. And that can be very tactless and cause a lot of harm if not managed carefully. But there’s also a lot of value in having people in a group who are prepared to confront things rather than brush them under the carpet.

I felt that I was making people uncomfortable when I started talking about my experience of being an autistic civil servant – when I got my autism diagnosis I had no role models senior to myself and felt alone and that I didn’t fit. As time has gone on my speaking openly has empowered others to be open or to seek and get a diagnosis so I know my message is reaching people. It’s not easy though – there are lots of people who would rather hear a neurotypical person speak about autistics than hear us ourselves, or who just don’t imagine we can speak for ourselves. It’s still unusual for autism advocacy organisations to be autistic-led, so there’s plenty of change still needed.

It might seem to most that attitudes to autism outside the workplace – particularly relating to autistic children – shouldn’t affect work, but they do. A colleague of mine is neurotypical and has an autistic son of school age. For this colleague, autism is the enemy. It took the neurotypical child they imagined they had and – in the run up to diagnosis – turned that child into a problem. They grieved for the neurotypical child they’d imagined they’d had, and lamented all the things they feared this strange “new” autistic person wouldn’t be able to do. (This colleague has bought into the stereotype, not knowing many adult autistics.) Autism makes their life difficult – there are tears and tantrums, problems with school, picky eating. Parenting has become exhausting. My colleague is exhausted, fighting this “enemy” autism which has “taken” their child. It’s not fair on their other children that the autistic child takes so much time and attention and that the parents are always so stressed. My colleague feels like a warrior or a martyr struggling heroically with this terrible situation. And them expressing their sense of themselves like that is hurtful to me.

Obviously to me there are quite a few things wrong with my colleague’s way of thinking – I would point out that an autistic child can grow up to be a successful and happy adult with friends, family, job and so forth. Like it or not, the child was born autistic – there never was a neurotypical child from which autism could be “removed” – it doesn’t work like that. The birth of this autistic child was not a tragedy, and their diagnosis was not a defeat. If anything, it was a great moment of empowerment when the whole family learned something more about one of their members. The child being difficult may well be an expression of distress – reduce the distress and things may improve. After all, if the child had a physical condition that caused suffering you’d cut them some slack on their behaviour. But it’s all very well for me to say all that because I’m not living in the situation, which is doubtless incredibly difficult.

What I’d like to do though, is reframe things. I have friends whose children have physical disabilities. Yes, it’s very hard for the families that they have to manage anxiety, hospital appointments, specialist equipment etc., and there are so many emotional responses and contexts to cope with. But the parents don’t talk about fighting their children’s conditions, or draw attention to how difficult it all is, or lament the able-bodied child they don’t have (at least in public). It’s important for these children managing physical disabilities to grow up with all the same normal expectations of achievement, failure, parental pride and equality within the family as their siblings. These children have parents who understand that they need to hear “I’m proud of you just as you are” rather than “I wish you weren’t disabled, and your disability makes me so unhappy.”

You’re probably thinking: “I’m sure the parent of the autistic child would never say that to them” and you’re probably right. But what they would do is say it to other adults, when the children may overhear. Or on social media. So both child and adult autistics may hear the message “a parent who has an autistic child will be deeply disappointed and is a hero or a martyr for coping with it”. That’s not nice, and it contributes to the non-equality of autistic people in society.