They told me my child had no mind

When doctors urged Judy Fryd to write her baby off, she went away and founded Mencap. David Cohen talks to the woman who brought education to the 'ineducable'

Judy Fryd spreads some old toddler photographs of her daughter, Felicity, on her living room table and exclaims: "Isn't she gorgeous? People used to peer into her pram and say, 'My! Doesn't she look intelligent!" She was bright-eyed and she'd engage them. It never crossed my mind that a few years later, a doctor would describe her as 'a child with no mind'."

A child with no mind. What a phrase to conjure. Testimony to how crude and inaccurate the medical profession can be. Today Felicity would be diagnosed as autistic - a child with a specific mental developmental disorder that impairs language development, communication and social skills, and which, in the majority of cases, is present from birth.

Such children are often talented in art and music and can be taught to communicate. But these sepia images of childhood recalled the Forties, Felicity having been born in 1938, when no such medical term existed. Then, parents of children like Felicity were advised by doctors to "forget about that baby, go home and have another one". Society called them "imbeciles", the state wrote them off as "ineducable". Parents had little option but to suffer in silence and hide their "mental defectives" away.

The fact that life for autistic and other learning disabled children has changed dramatically for the better is primarily due to Judy Fryd, one of the great unsung British heroines of the 20th century, who 50 years ago this week founded Mencap. Most of the changes she fought for - such as the right to a proper education for learning disabled children - came too late to improve the life of her own daughter, but thousands of others have benefited. Hers is a story of a mother's courage and intuition and, more broadly, of an individual taking on the state and changing society for the better.

For an 86-year-old, Mrs Fryd is remarkably lively. She is small but not frail, with curly silver hair that defies gravity, a ready laugh and charismatic eyes that betray a keenly tuned intellect. Her memory, she confesses, is no longer a reliable continuum, but all the important events are perfectly recalled, at worst shuffled around, yielding a slightly impressionistic tour of her life. She sinks back on her floral sofa in her living room in Harpenden, Hertfordshire, looks out over the empty garden where Felicity and her younger siblings used to run wild and, between watching National Lottery Live and Match of the Day, endeavours to recount the story of what it was like to be the mother of a "mental defective" in the Forties.

"It was not until Felicity was nearly three that my husband, John, and I began to worry that something was not quite right," she begins. "She was saying words like "mummy" and could sing nursery rhymes beautifully, but she was not using language to communicate the way her peers were. So I took her to the local Child Guidance Clinic to be assessed. The supervisor tried to give her an IQ test, but Felicity didn't take any notice - she wandered round the room picking things up and he didn't know what to do, so he told me to come back in three months. When I returned, he showed her a tray with little things on it, waited until she was looking away, took one item off and asked: "What's missing?" I knew the phrase "missing" didn't mean a thing to her, so I added: "He wants you to tell him what he's taken away dear." He gave me a withering stare and announced sternly: "Mother is not to interfere." Felicity knew he wanted something, so she took a little chair and put it next to a box on the tray and said: "It's a table". I thought that was an intelligent thing to do, but no, she didn't get any marks for that. He gave her an IQ of 43 and wrote her off."

This first encounter with the authorities threw up two enduring frustrations for Judy: she could not get any reliable information on Felicity's condition, and secondly, the crude assessment of her intelligence failed to look at the intelligence she had. "I had taught her her alphabet and to count, so I realised that Felicity had learning ability as well as disability and that there was something that could be developed if only we could get her educated," she says.

But no regular school would take her. When Felicity was six, Judy tracked down a boarding school for "mentally handicapped" children in Surrey, one of the few that existed, and they agreed to give her a month's trial. But Felicity lasted one day. "The morning after we dropped her, we got a telegram that said: 'Felicity not suitable. Must be removed at once.' When we got that telegram, John and I sobbed in each other's arms. Our hopes rested on that school. When I went to fetch her, I heard a tale of woe about how wicked she'd been. They had tried to introduce her to the other children but when they put their arms out to shake hands, she took it as an invitation to swing them round. Every one of them was a Down's syndrome child, whom Felicity had never seen and she was probably frightened. The staff tried to stop her and she apparently bit one of them and, well, that was that."

Judy channelled her anger and disappointment into a letter she penned to Nursery World magazine in 1946, in which she described the difficulties of having "a backward child". The number of "me too" letters that flooded in from other mothers convinced Judy that hers was a common experience and she started Mencap.

There began a long, hard slog to change a whole raft of legislation, from social security and social services to education. In many ways, it was the making of Judy Fryd. She was a political animal at heart, having joined the Labour League of Youth in her teens and later, as a graduate of Ruskin College, Oxford, she befriended many future Labour politicians. "Before Felicity came along, my career was always going to be politics," she reflects. "I just didn't realise it was the mentally handicapped corner I would be fighting."

By the time Mencap got off the ground, Felicity, who was being educated at home, had developed disturbed behaviour. "By now she had three younger siblings but she never played with the other children," says Judy. "Instead, she used to run wildly or when she was miserable, sit on the compost heap and howl. There was no restraining her. Even if it was pouring with rain and I had shut all the doors, she would break a window and disappear out of the house. Usually I'd find her in the neighbour's garden, where she used to open the chicken run and let all their chickens out. Sometimes she would open the window upstairs and walk precariously along the ledge and I would have to coax her back in. And she wouldn't sleep. She used to howl and hammer on her bedroom door at three in the morning until we let her out to play."

So from the age of 12, Felicity was institutionalised. The local hospital in St Albans for the mentally ill was the first of many in which she was lumped with "psychotic people" who had very different problems from her own. "At one hospital, her room-mates were all old ladies and Felicity didn't like them, so she would push them over," recalls Judy with wry amusement.

In the meantime, Judy had come across a medical article about "juvenile schizophrenia". She knew that Felicity was "not schizophrenic in that way", but the behaviour described was definitely the closest match she had read to that of her daughter's. So in 1958 she wrote about it in Mencap's newsletter, Parent's Voice, and the widespread debate that followed spawned further writings and soon after they began to use the term "autistic". Judy gave evidence to the Royal Commission on mental illness and lobbied Parliament to get the relevant Acts changed. After 21 years of fighting, the 1971 Education (Handicapped Children) Act was promulgated which overturned the previous notion that such children were "ineducable" and ensured for the first time that every learning disabled child was entitled to an education.

Today Mencap wields an pounds 85m budget, employs a staff of 6,000 and has 50,000 parent members. Fred Heddell, Mencap's chief executive, says that for an autistic child today, the range of services available has improved dramatically and that the public are much more understanding and tolerant. "It is possible for an autistic person today to form relationships and to lead a much less isolated life," he says. "But there is still a way to go. The ability of the medical profession, for example, to break the news to parents without being clumsy or thoughtless still leaves much to be desired."

Three years ago, aged 55, Felicity caught pneumonia and died. Despite it all, did Judy feel she'd had a happy life? "I think," she ponders, "that she was happy at the beginning and the end, but the middle must have been terrible. I remember the devastation she felt the first time she realised she was different. It was when her siblings started school and, unlike her, they weren't sent home on their very first day. She realised then for the first time that there was something wrong with her and not others. Seeing her crushed little face as she began to piece it together ... that was the moment that broke my heart."

Mencap this week launches its pounds 30m Blue Sky appeal to provide counsellors to advise families with learning disabled children. Donations can be made to branches of the Halifax Building Society or Barclays Bank. Credit card donations to 0645 777779.