Pianist Noriko Ogawa is expanding her Jamie’s Concerts series for the parents and carers of people with autism. She tells Duncan Honeybourne about her personal connection to a complex condition
Autism, in its many and varied expressions, remains a much misunderstood condition. The autism spectrum is vast, ranging from those who exhibit impressive recall in a specific topic but struggle to engage with colleagues’ small talk, to the entirely non-verbal individual who displays little or no engagement with the outside world.
The confusing realities of autism are always infinitesimally subtle and, within a loose-fitting framework, each person is different. The media carries a constant stream of real-life stories that enrich public awareness, but society’s growing familiarity with the concept of autism can foster a set of stereotypes that inhibit broader curiosity, discovery and understanding. If you think you know what it’s all about, it’s all too easy to make a quick judgment and, most devastatingly of all, harder to keep an open mind to the strengths, weaknesses, struggles and insights of each individual. Needs are complex, ever changing and all consuming, and so are the demands made on families and carers.
Noriko Ogawa knows this better than most, and that’s what led her to launch a special series called Jamie’s Concerts, with its roots not only in Ogawa’s scintillating pianism, but also in a far more human experience.
Having won third prize at the Leeds International Piano Competition in 1987, Ogawa found lodgings with a musician couple named Peter and Janice. ‘After I got the prize, I had lots of concerts and needed a place to live,’ she says. ‘Ben Kaplan [Ogawa’s teacher] introduced me to Peter and Janice. A few years later Jamie was born; a long-awaited son. Everyone was very happy.’
Ogawa had always been attuned to the sensitivities of the human condition. ‘Since I was a teenager I’ve had this fantasy of being a psychiatrist,’ she admits. A friend with autism had given her an insight into the workings of the autistic mind, a framework she quickly recognised in Jamie’s behavioural patterns: ‘I realised Jamie wouldn’t turn around when we called his name, and he got stressed very easily. Jamie was unique in many respects. He fascinated me no end.’
It was Ogawa who first suggested to Peter and Janice the reason for Jamie’s uniqueness. ‘When Jamie was two-and-a-half, I sat them down in the lounge. I told them to go to the doctor, because I believed he was autistic.’ A diagnosis of severe autism followed and life for Jamie’s parents changed immeasurably.
Jamie does not communicate verbally, cannot make eye contact, is hypersensitive to musical sounds and is extremely particular about his diet. From babyhood, Jamie took no pleasure in listening to music, finding it an intrusive and unpleasant sensory experience, and he would never accept any food cooked by Ogawa. ‘To this day, Jamie won’t eat rice – not even a single grain. It’s a signal of cooking by me, an outsider in his home.’
Ogawa explains that Jamie, in many senses, rejected her. ‘He always knew that I was not his mother and I was not his sister.’ Ogawa tells me this not with a sense of sadness, but in wonderment of Jamie’s emotional intelligence and integrity: ‘So many mothers carry this sorrow: my autistic child doesn’t look at me. Does he know I am his mother? I can tell them that yes, they do know. Jamie knew so clearly what Janice was to him – his mother. I was a lodger from another country, and he knew that. Jamie was the one who knew, more than anyone else in the family.’
Ogawa desperately wanted to help Jamie, but wondered how. Then she noticed a pattern in Jamie’s response to his mother’s mood. ‘When Jamie had difficulty sleeping he would run around and take books off shelves; we’d watch him do it. The more Janice tried to stop him, the worse it got. When we had a cup of tea and calmly watched him, Jamie seemed to relax and things got better.’ Ogawa’s observation was a vital ingredient in the eventual conception of Jamie’s Concerts 11 years ago.
‘I realised that if Janice calmed down, Jamie was easier to handle. So I decided to help Janice, not Jamie. Without looking at me, he told me that he didn’t like me interfering.’
Ogawa realised how restricted a lifestyle Jamie’s parents were obliged to lead: ‘They could not go out very much, not to dinner, not to a film. Jamie would get upset if he was left alone for an evening with a stranger.’ She identified that the loneliness and stress of parenting an autistic child could be partly assuaged through the healing power of music. ‘What about a concert during the day, while Jamie was at school? He comes home at three so I designed a concert to start at 11am. The important thing for me was not to compromise artistic standards in any way. I wanted proper repertoire, nice clothing and a high standard of performance. By doing this, I could help parents and, indirectly, the autistic children themselves. But I leave the children to decide whether they want to come themselves. For Jamie, the sound is too much, but some autistic children can’t get enough music.’
The first Jamie’s Concert took place at the Muza Kawasaki Symphony Hall in autumn 2004. ‘I was laughed at in the beginning,’ recalls Ogawa. ‘Many people couldn’t understand how such an idea could help autistic children and their parents.’ Then a special needs educationalist leapt to Ogawa’s defence. ‘She stated that what I was proposing was not rubbish. Her endorsement opened the door.’
Jamie’s Concerts have since taken place regularly in Japan, and in 2010 Ogawa launched the series in the UK. Now, thanks to a new partnership with the National Autistic Society, Jamie’s Concerts are set to expand in this country. Ogawa was announced as a cultural ambassador for the society in September and her new role will be formally launched in April. The society will help to promote Jamie’s Concerts and get more parents and carers involved.
The concerts can be moving: ‘The audience members feel a connection through shared experiences,’ says Ogawa. ‘There is an extraordinary understanding in the room, as mums and dads exchange stories and meet other parents and carers. There’s a lot of crying, but much laughter too. Sometimes music can permeate more than words. I strongly believe that this couple of hours of mutual understanding and high-quality music gets through to parents and carers, and eventually to the children themselves.’
It is a devotion that has led to Ogawa’s appointment as a cultural ambassador with the National Autistic Society. Jamie’s mother was the first person Ogawa rang to share the news of her new role. ‘Janice knows what a strong impact Jamie has made on my life. I’m not playing the piano simply to be successful; he’s given me more than that. It may not be visible to an outsider what is going on, but I am pioneering a way of thinking, an acceptance not only of those who have autism themselves, but of those close to them who live and care for them. It’s a kind of healing, in a way.’
Reprinted by courtesy of International Piano magazine.
Duncan Honeybourne is a pianist whose life and career have been shaped by his autism-spectrum condition. He has given talks on a wide range of autism-related topics and promotes the understanding of autistic-spectrum conditions
The next UK Jamie’s Concerts are in Manchester on 22 April and London on 5 May. There will also be an evening concert to raise awareness of Jamie’s Concerts and launch Ogawa’s role as a cultural ambassador for the NAS at Eaton Square on 9 April.
For more information, visit http://uk.jamiesconcerts.com
Donations to Jamie’s Concerts can be made at www.justgiving.com/noriko-ogawa1