This is the fascinating story of a music obsessed journalist, his partner Ginny, their daughter Rosa and their eldest child, James who is autistic. It’s about how they have navigated their way through James condition and found a common bond through music that allows James to be part of a world that confuses and baffles him at times to shine in his own particular way.
The book is divided into 10 chapters, each referencing a song, most of which were among my personal favourites and gives the reader an idea of the breadth of music that James listens to and how much they are woven into family life. In the introduction the author, is at a Paul McCartney concert prior to his Glastonbury appearance, and watches the effect it has on James who was 15 at the time and a huge Beatles fan.
Diagnosed when he was 3, James sees the world differently, sometime withdrawing and some times with deep joy. There is an accompanying photo of James wearing a Magical Mystery Tour t-shirt and looked every excited.
His father sees him as a:
‘a very fragile human being dependent on the kindness of others’ and that aspects of his condition:
‘will always make it near impossible for him to navigate life alone.’
The author discusses his own discovery of music when he first heard the Beatles, aged 4, and then progressed onto others. He played in a band as a teenager and after university became a music journalist. He met Ginny as they moved in similar circles, set up home and then James came along.
James’ diagnosis of autism was very depressing and bleak as they were told that:
‘our child would be hopelessly cut off from the world.’
But they were wrong as music became the dominant force in his life enabling him to become part of the world and not separate from it. And it brought the author back to music himself. As he says, music is:
‘a perfect soundtrack to life, and all its joy, sadness, tragedy and wonder.’ I recognised my own journey to music through the descriptions of his work and specific songs. Also the weekly music press such as NME which I still miss, progressing to the monthlies and ultimately the Guardian as the music business changed and contracted with the coming of the Internet. He notices James’s passion for certain types of music Captain Beefheart is a no-no but the Velvet Underground’s I’m Waiting For My Man’ is a hit.
I sympathised with the author and Ginny as they battled through assessments and therapists while feeling adrift. Meanwhile James develops a like in for Ipod Cover Art and Mott the Hoople. A friendly, helpful specialist begins to work with James and they all begin to navigate through the world, determined to get him an education and skills in language. They also learn about the different types of autism and worry about the future. They also go through a Statutory Assessment and a Statement of Special Educational Needs with the local council which is rejected, they fight it and ultimately win. But what happens to the ones that don’t?
Along the way, the nature of people who are drawn to the music business is raised. PIL’s bassist, Jah Wobble assets that the business:
‘is full of oddballs.’
Several examples are suggested such as Beethoven, Mozart, Prince and Brian Wilson
When James performs at an end of school concert with his band and is praised, the author says:
‘If you are repeatedly told that your child can’t do it, it starts to eat at you. If’ you’re not careful, life can start to feel like a long attempt to stop them being dragged into failure and bleakness.’ But performing and music is something that James can do:
‘on the same terms as everyone else.’
And so they continue at the book’s end; James discovering new songs and new artists with his father joining in.
I really enjoyed this book as it felt so positive and encouraging. It reminded me of how I feel about music and my life. Prior to reading it I knew very little about autism and what it actually meant. It definitely meant difference but I didn’t know to what extent. I sympathised greatly with their struggles with the council to grant him a statemented education but the hope for inclusion doesn’t quite materialise and the negativity with which some professionals view his condition. At one school, James learning to hang up his coat is an achievement for the staff whereas his parents wanted more for him. At times the book was a tender portrait of living with difference.
Along the way the family meet other autism sufferers, people from the music industry, and others that they meet through James. I felt that it ended on a positive note and I hoped that James would continue to have wonderful experiences.
My thanks to Netgalley and the publisher for an ARC.