When I think about my brother Philip, he’s quite often in the Oakwood Palace. We went there most weeks as a family. A recent Trip Adviser entry about it says, “almost speechless, without a doubt the worst Chinese meal ever’. That’s not how I remember it. Being asked to stand away from Philip by a cameraman shooting a scene in our garden for a BBC programme about autism, so he’d appear separate from us, not joining in, well that wasn’t how we remembered it – knew it – either. Perspective, artistic licence…they can do funny things.
Philip, who has autism, is the oldest of my four brothers. Like all my siblings, he is unnecessarily tall (they max out at 6ft 7, the titch is 6ft 3). He and they consider me to be stupidly small. They are just wrong. Perspective…That BBC2 Horizon programme, “The Broken Bridge” was shot back in 1968. The UK National Autistic Society was just 6 years old. Ideas, thinking, research about autism was pretty raw.
Growing up with the Beatles, flower power and much incense, across the late 60s into the 70s, we hunted as a pack, around town, in the swimming pool, cinema and some terrible (apparently) Chinese restaurants. I can remember being annoyed at the time by the BBC’s assertion that Philip had ‘no bridge’, there was no connection with us and his surroundings. I’m still annoyed, to be honest. What exactly were we doing all day then? Sure, Philip had no speech – apart from a legacy sound acquired from a psychologist, who taught him to say ‘k’ as a cough (which is how he still addresses his brother Mark, and indeed we do too sometimes) – but he did stuff with us, lots of stuff. And often much better than us – he could go much (much) higher than us on the park swings, eat chocolate far (far) faster than us. And he liked David Bowie before us, how cool was he (I think we may have fudged the credits at school, memory, huh…).
Which isn’t to say it was all plain sailing, or always easy. Growing up with a brother with autism, well there were definitely moments. Like occasional chocolate supermarket pilfering that we’d have to explain to not always sympathetic staff (or not, depending on how quickly he ate it). Being – and feeling – responsible for Philip as siblings, well it could be hard. And moments of panic and remorse, including a couple of times when he got lost (once on a train; we found him in the first-class carriage, of course), or when polishing off someone else’s meal in the Oakwood Palace.
And then there was the period when my parents got help from a psychologist, which involved us all as a family spending many hours on a rota, each of us going through a programme of operant conditioning with Philip, which seemed to have frustratingly little impact. And seeing Philip simmer and boil over.
Philip’s childhood was mostly spent out of any kind of formal education. That was the reality back then. The BBC programme Philip was in featured five families. In a follow-up programme six years later, this was a common lament – where was the education, the support? There were a few exceptions – a placement in a Rudolph Steiner residential school, a few hours in another. But it was mainly woeful. Happily, things have moved on in the UK in this regard, though it’s still far from perfect. And most of the bizarre theories swirling around then about autism’s causes have mainly gone away – like Philip performed one too hand-stand or should never have been brought up bi-lingual – though some of the underlying parental guilt-tripping sadly hasn’t. I am hopelessly mono-lingual as a result, my mother refused to speak her native Dutch around us when we were growing up. Even though she knew the idea of a link was laughable….
We learnt a lot growing up with Philip. As well as understanding and seeing the world through a unique set of eyes and experiences, and I’m sure ending up as more fluid, creative thinkers, we also learned very quickly to think ahead, though one very particular question – what would happen to Philip, into adulthood? I’m not sure how usual this is, for children to wonder from an early age about someone else’s future – or maybe that’s actually an empathy pass you get being a neurodiverse family. Whatever, the answer evolved as Philip did, who lived with my parents throughout their lives. Happily.
PS. What we’d have given for the support, advice and tips OSW provides. It’s what makes it such a special and important initiative, which I’m so pleased to see thrive and grow.
David Morrall is a senior official in the UK Civil Service and one of five brothers.
