The movie that tells my daughter’s story
A documentary about an autistic man finally meeting his heroes – the rock band Metallica – uncannily mirrors Andrew Perry’s family situation.
I’ve been a journalist for 20-odd years, writing about rock music for a variety of titles, including the Telegraph. My hectic, arguably frivolous career was cast in a sobering new light with the arrival of my first daughter, Rose, in February 2007. Within 20 minutes of her birth, it was made clear to my wife and me that she was not “normal” – she was floppy, unresponsive, and not crying enough.
She was whisked off for tests, but despite numerous investigations over the ensuing years, she remained undiagnosed, but for a catch-all term: global developmental delay. This means she is behind in all aspects of development and learning. Finally, last autumn, she was identified as “probably” falling within the autism spectrum, due to her difficulties in picking up on social clues.
All this medical palaver has obviously been trying at times, as well as time-consuming and demoralising. Rose herself, however, is a joy, not just for us as parents, but for everyone who comes into contact with her. She lights up the room with smiles, laughter and affection. For all her social and physical difficulties, there really is no getting gloomy around Rose.
Needless to say, these past few months our ears have pricked up at any mention of autism. And when I read the press release for Mission To Lars, my eyes nearly popped out of my head. Attending an advance screening, I was out to glean so much from it. Would the autistic brother’s behaviour match Rose’s?
Mostly, I wanted to see how the family coped with the brother’s disability – both in the context of his sister’s journalistic work, and their experiences in the world of rock, where coolness is king, with little consideration for life’s unfortunates.
Mission to Lars is deeply moving, laugh-out-loud funny and sky-scrapingly life-affirming, with a feelgood ending that had not only me blubbing into my hankie. The promotional posters even carry a quote from the leathery emperor of heavy metal, Lemmy, saying, uncharacteristically: “I cried.”
Tom Spicer, we learn, suffers from Fragile X syndrome, which causes learning difficulties and which may also give rise to autistic symptoms. Forty-year-old Tom exhibits some classic autistic behaviour – social anxiety, difficulty making eye contact and communication problems. One of his behavioural tics for the past 20 years had been to repeat, over and over again, the words: “When am I going to meet Lars?”
Finally, his younger sister, Kate, cracks, and decides to arrange a meeting. Using connections through her job at a national newspaper, she contacts Metallica’s organisation and sets it up for Tom to attend three shows in the US. The plan thus involves taking Tom out of his familiar care-home environment in Exmouth, flying to America, and travelling many miles between gigs in a rented Winnebago.
It was obvious to me from the off that this was a hare-brained scheme. One thing we’ve come to realise about Rose is that she likes routine, and hates any break from it.
Initially, Tom refuses to leave the care home. When they eventually arrive for the first night in Las Vegas, he refuses to go to the show. The first half hour is unflinching, as Kate and Will, Tom’s younger brother, who is holding the camera and made the film, face up to the fact that, through their busy working lives, they’ve lost touch with their disadvantaged brother, and don’t really understand him. I began to find myself mentally ticking boxes: yup, I know that one – feelings of helplessness, and guilt for leading your own life as if nothing were wrong.
With Tom resolutely staying away, Kate goes to the first concert anyway, and makes quite a night of it. The following morning, she wears sunglasses, looking peaky. That box I’ve definitely ticked. I doubt that there are statistics for people who binge-drink to numb the pain of looking after a handicapped relative, but I suspect the percentage would be high. The rueful, washed-out look on Kate’s face got plenty of laughs in the screening I attended. For me, it was all too near the knuckle.
One of the most difficult aspects of having Rose has been about how much I should change my own lifestyle in response to her. After the initial shock of the first few months, I did a lot of thinking. Quite apart from having to return to work to pay for nappies and food, it was a matter of realising that life had to go on, even though it would never be the same again. I gradually came to the conclusion, for better or worse, that you owe it to your children to be yourself, and to be the best that you can. Suddenly leading a hermetic, grim-faced existence, to me, seemed to be dishonest, and selling Rose short.
However, in my own line of business, the chasm between the hell-raising of the rock world, which I always unashamedly adored, and the new reality of MRI scans, medical consultations and pleas for state financial support, has often seemed nigh-on unbridgeable. Emotionally, it takes its toll.
Similarly, I feel guilty when the fluctuations in my workload, over which I rarely have control, impinge on Rose’s routine. Even after five years, I feel bad rushing off into town to see a band play without having read her bedtime stories. Put simply, I worry that my child with learning disabilities and my life are irreconcilable.
My wife and I have chosen to play our cards close to our chest. Initially, we deferred telling people about Rose until we had a diagnosis – it almost seemed unfair to say there was something untoward without being able to tell them what it was. Now I feel ashamed at having been so cagey about the light of my life. Finally coming clean and writing these words feels like a release; very therapeutic.
As the film proceeds, it seems that Tom will never be able to face having his wish fulfilled for him; that rock and autism really are mutually exclusive. However, it gives nothing away to say that Tom’s dream comes true. The closing scenes, at the final concert, in Anaheim, California, are almost overwhelmingly life-affirming. Lars, who has a reputation for arrogance, proves to be just wonderful with Tom, and invites him to join the band as they walk out onto the stage.
As Tom, grinning from ear to ear, headbangs along with everyone else to the band’s biggest hit, Enter Sandman, the message is clear: rock includes everyone in its celebration, and that music has a thrilling, magical power, especially for those who most need healing.
Three years after Rose, her sister Georgia was born. With a 1-in-20 chance of an undiagnosed disability repeating in subsequent children, enlarging our family was a tough decision; we decided to go for it, and little Georgia has turned up “normal”. She’s a feisty livewire, in stark contrast to Rose’s placid, sunny temperament.
We greet Rose’s every developmental milestone with double the pride. There was a new high in January, just before her fifth birthday. After months of crawling, bumshuffling and prevarication, Rose suddenly started walking. To my joy, she loves tuneful punk rock and has been weaned on the Ramones and the Lurkers.
Every day, Rose is the star of our own private movie. As for Tom, since meeting Metallica he now has a cool haircut, and has become more confident socially. One day, unprecedentedly, he walked out alone from his care home and caught a bus into Exeter. Devon police eventually found him in Plymouth. Asked on his return where he’d been, he replied simply: “Out.”
As rock music has been proclaiming for 60 years now, there is a free spirit in all of us. I can’t wait for Rose’s blossom, too.
What is Fragile X syndrome?
Fragile X syndrome (FXS), the condition suffered by Tom Spicer, is a genetically inherited disorder involving a mutation of a gene on the X chromosome called FMR1 (fragile X mental retardation 1). The gene’s function is to create a protein needed for the brain to develop normally, but if damaged it makes too little of the protein or none at all. Diagnosed by a blood test, FXS affects one in 4,000 boys and one in 6,000 girls. As boys have only one X chromosome, the disorder is likely to affect them more severely.
Fragile X can cause a range of symptoms, including developmental delays and learning disability. It is also the most common known genetic cause of autism and can cause symptoms such as short attention span, dislike of eye contact, difficulty in relating to other people and the need for routine.
Speech and language therapy, as well as treatments for behavioural disorders, can improve the lives of Fragile X syndrome sufferers, but there is no medical cure.