The woman who unlocked her daughters mind
By the time her daughter was three, Sophie Dow knew something was wrong. Annie was monosyllabic, and it would be a long time before she could string words together. Yet, even as Sophie’s foreboding grew, her maternal antennae were picking up, between the fragmented words, signals of a special quality. When they read Cinderella, Annie would sum up: “Once, time, shoe!” With Snow White, her summary was just as acute: “Once, time, dead!” Thus Annie distilled the laws of narrative. There was no other way for Sophie to describe it: her daughter was witty.
Thirteen years ago, Annie’s first diagnosis was devastating. A Harley Street child psychologist told Sophie that her daughter was “mentally handicapped.” This sounded terrifying and explained nothing. It didn’t identify particular deficits, nor did it incorporate Annie’s sparky sociability. Sophie and her husband decided to leave London to find a less pressured environment to raise their children.
Having moved to Scotland, it took years of tortuous consultations to get an equally unsatisfactory diagnosis for Annie: minimal brain dysfunction (MBD) occurring in pregnancy. It was mystifying to be left with so little information. For Sophie, the process of her daughter’s development was rich with the detail that animates a mother’s imagination. At primary school, Annie was good at making friends; she was full of jokes, had artistic talent, and was free—perhaps too free—of anxiety. As she got left behind, the problems clarified: Annie wasn’t learning to read, she had no real grasp of time, and she found it hard to wash herself or brush her hair. What Sophie wanted was some kind of psychiatric equation that could define the weaknesses and pinpoint Annie’s strengths, so she could build on them.
In the fledgling field of neuro-developmental disorders, one of the big diagnostic concepts to have emerged in the last 20 years has been attention deficit hyperactivity disorder, or ADHD—which supplanted MBD. But while Annie had some problems with attention that might fit with ADHD, she displayed no signs of hyperactivity. It wasn’t particularly helpful, either, to think in terms of an overlap with some of her co-ordination (ie hairbrushing) difficulties, which might have got her a diagnosis of dyspraxia, or DCD.
It was when Sophie turned back to her native Sweden to do some research that she stumbled on the answer she needed. Since the 1980s, the Gothenburg-based professor of child and adolescent psychiatry, Christopher Gillberg, had been developing a concept that incorporated “deficits in attention, motor control and perception.” No matter that its acronym—DAMP—sounded grim in English; and no matter that the diagnosis had properly taken off only in Scandinavia. This was the key into Annie’s mind that Sophie had been searching for.
Armed with her DAMP diagnosis, Sophie acquired a sense of wonder about the workings of the brain. She abandoned her career as a journalist and established an organisation called “Mindroom” to explore neuro-developmental issues in learning difficulties, raise awareness, and help other parents seeking diagnoses for their children. She argues that as many as 1 in 5 children may suffer from developmental problems; it is a public information issue in waiting.
One of the key successes of Mindroom has been to establish a relationship with the Royal Mail during a rethink of its employment strategies. Up to 20% of its 193,000 employees may have had some kind of learning difficulty. Instead of seeing this as an equal opportunities burden, Sophie encouraged the postal service to look for the advantages. Someone with Asperger syndrome might be ideally suited to sorting mail, while another with ADHD would be better at delivering it. She devised character-profile cards which showed how individuals with autism, dyslexia, Tourette’s, DAMP or ADHD may have talents waiting to be discovered. The Royal Mail is set to distribute 30,000 of Sophie’s information packs to every school in Britain. Her ambition is to set up Mindroom centres UK-wide, in collaboration with Christopher Gillberg, as sources of clinical advice, research and education.
Annie’s talents are clear. Now 16, she would make a good role model for Mindroom. She paints and sculpts curious, elongated figures, in great detail. They are often vampires and mummies—Addams family-type characters—with the distinction that, like Annie herself, they all have happy dispositions.
The Freudian 20th century was so obsessed with the influence of parents on children that the developmental equation was rarely viewed the other way round. How do children shape their parents? Sophie, now 53, has had her world-view transformed by her daughter. “Annie is my guide, and I’m the tool,” she says. “I’m a bloody good tool, and I feel an enormous sense of protectiveness. But she’s the guide. When I speak about her in public I usually cry, and I don’t try and hide that. Those tears consist of unconditional love, fear, exhaustion, determination and humility.”
Alexander Linklater 10th March 2007
The Guardian Weekend Magazine
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