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I was invited to a very fancy party recently. I desperately wanted to go but the prospect of going alone was so intimidating that I turned it down. The truth is that I would most likely have wandered in, been too shy to talk to anyone, and left feeling worse than when I arrived. I am not great in social settings. I much prefer one-on-one conversations. I also like routines and can get flustered when plans change at the last minute. I always put these things down as personality quirks.
It has only been in the last year when I have seen my daughter, Laila, increasingly struggle at home and school that I have realised how much she is like me. The difference is that I am an adult and have learnt to live with my quirks and work around them, but she is a child and can find that the world overwhelming. Life can feel bleak in our home — we want to help but are helpless. We ask ourselves whether there is a missing piece of the puzzle that might help us understand the bigger picture: is it that she is 10, is it the psychological aftermath of the pandemic, is it that she is creative and sensitive — or is there something else, something that has a name?
This week, the presenter Melanie Sykes announced that, aged 51, she had discovered there is a word that explains her past challenges: she is autistic. “Finally so many things made sense,” she said. “I cannot begin to tell you the sense of relief this is for me and how much I celebrate this diagnosis. I now have a deeper understanding of myself, my life.” Her announcement came in the same week that the model and activist Christine McGuinness, 33, revealed she too had been diagnosed as autistic, saying: “It all makes sense now.”
Both Sykes and McGuinness have autistic children and it was in trying to better understand them that they came to more fully understand themselves. My wife, Bridget, is an autism specialist and she explained to me that some girls fail or are late to be diagnosed as autistic because they don’t fit the classic — in other words, male — description of autism. Bridget has often described how parents of autistic children go through a period of mourning when they realise their kids are not neurotypical. There is also relief in knowing that there is a name for what they have; it opens up the possibility of helping things make sense.
I have in the past been suspicious of our culture’s tendency to over-diagnose; does everything have to be explained by a disorder, I wondered. That was before my daughter’s troubles started to reveal themselves. It is desperately hard to know your child is not happy. You want to protect them, to promise things will get better. But it’s not easy. There is a line in Natalie Merchant’s song Tell Yourself where she sings “tell yourself there’s nothing worse than the pain inside and the way it hurts. But tell yourself it’s nothing new, ‘cause everybody feels it too”. That is what I would like my daughter to know. She is not alone and one day, it will all make sense.
In other words...
Rafiq’s testimony reminds me of being advised to tell people my name was Seth in the US
There has been much focus this week on former Yorkshire cricketer Azeem Rafiq’s testimony and his allegations of how prevalent the P-word was. There has been less attention on his allegation of how players used the K-word, Kevin, to refer to players of colour. I have no idea if this was the white cricketers’ idea of a joke, but there is something deeply disenfranchising about refusing to use a given name. It reminds me of when I first travelled to the US and was advised to tell people my name was Seth. The intention may be to help those of us with non-Western names fit in but the result is to insidiously imply that we never will.