Joyce is nine but can't express love, excitement or sadness. She's just one of the growing number of little girls with autism
00:59 GMT, 25 April 2012
Mary Lawson with nine-year-old daughter Joyce who is autistic. Mary knew almost immediately her daughter's behaviour was unusual, but couldn't believe the initial diagnosis, despite she says 'knowing it was true'
From the moment her newborn daughter was placed into her arms for that all-important first embrace, Mary Lawson’s instinct told her something wasn’t quite right.
‘I’d never had a baby before so I didn’t know what to expect, and the first thing that struck me was her bright blue eyes, fair hair and pointed little chin,’ says Mary.
‘She was gorgeous. I expected to have amazing eye contact with her but when I gazed at her, she looked away.
‘As a first-time mum I’d no idea if that was normal. But it didn’t feel right and I even said to the doctor: “I don’t know what to do.” The problems weren’t obvious to others — even my husband Jason didn’t notice it — so I let it go.’
But Mary’s instincts proved correct. When the couple brought Joyce, now nine, back to their home in North London, they couldn’t escape the fact that her behaviour was unusual.
‘She didn’t like being held against me and would wriggle to get out of my grasp,’ says Mary, 45, a health and safety officer who now has two other children, Evelyn, seven and Christian, five.
‘It was heartbreaking, especially when she would cry for hours, but no “magic cuddle” from Mummy or Daddy seemed to help. When she was six weeks old I remember saying to my mum: “My own baby doesn’t like me.”
‘It was my sister, a primary school teacher, who first mentioned autism. She said: “Would you still love Joyce if she was autistic” and I’m afraid I said: “No.” I didn’t want to believe it. But deep down, I knew.’
Autistic spectrum disorders (ASD) affect more than half a million people in the UK — around one in 125. Symptoms vary from person to person, but commonly eye contact and speech can be affected.
They may find social interaction difficult and have no sense of imagination. Some — though not all — hate surprises and can have obsessions over items or puzzles.
However, the stereotype of an autistic child tends to be male, with the most common point of reference being Dustin Hoffman’s portrayal of an autistic man in the 1988 film Rainman.
According to the National Autistic Society (NAS), the ratio of girls to boys with the disorder is around one to four. But the number could be much higher.
‘We are just starting to recognise the difference between how girls and boys present their symptoms and we suspect that girls are being under-diagnosed,’ says Carol Povey, director of NAS’s Centre for Autism.
Michelle Naylor with autistic daughter Hannah. The five-year-old has been diagnosed with high-functioning autism, which means she has good language skills but doesn't understand the world like other children
‘That’s because girls tend to be able to hide some of the more obvious traits of autism better than boys.
They have better vocabulary and are better at copying how people interact socially, so they can “act” as if they don’t have autism. But that interaction is not “real” in an instinctive way, it’s a learned behaviour.
‘It’s for that reason that some girls can go undiagnosed until they are in their 40s or 50s. We really don’t know what the real figure of undiagnosed women is because different studies point to different numbers.’
For years, Mary and Jason refused to believe there was anything wrong with Joyce, preferring to focus on her amazing abilities.
‘She was so bright,’ recalls Mary. ‘She had all her numbers and letters by 15 months and had a laser-sharp brain. I quite liked the thought that she was a little bit “different” from all the other toddlers.
‘But when Evelyn came along 18 months later I couldn’t hide the fact that Joyce was “too” different. With Evelyn, I felt like a proper mother for the first time and realised what I’d missed out on with Joyce, and that made me sad.’
Even so, it was only when Joyce was six years old and her school alerted her parents to her aggressive behaviour that Mary and Jason decided they needed help.
‘Joyce had always been aggressive,’ says Mary. ‘She can’t say when she is sad or frightened so it comes out as anger. Even as a toddler she would lash out at Evelyn and would flap her arms or spin on the spot, other classic symptoms.
‘We took her for tests and weren’t surprised when the diagnosis of Asperger’s syndrome (a less debilitating form of autism) came back.’
Mary admits that the fact Joyce is a girl made the diagnosis harder to accept for her family.
‘Autism is a really unfeminine thing because what does a female nerd actually look like Who are her role models’ she says. ‘You want your little girl to play with dolls and say: “Come to my tea party,” but Joyce isn’t interested in any of that.
‘She’s more likely to ask something random such as what kind of catflap you would be interested in buying, because to her, that’s how you start off a conversation.
‘And her aggression isn’t what you’d expect from a little girl. Some people think she’s simply being wilful. They say things like: “Give her to me for a week and I’ll sort her out,” and I just think: “Oh really I’d like to see you try.”
Autism first came into the public eye with Dustin Hoffman's portrayal of a grown adult with the condition in the 1988 film Rainman
‘Of course, we worry about the future and if she’ll ever get married. If a guy walked up to her in a bar and started a conversation with her, he’d wonder what the hell he’d got himself into and I won’t always there to protect her, so who knows what will happen
‘One of the most heartbreaking things was that for a long time she never said she loved me. I know she feels emotions such as love, excitement and remorse, but she can’t express them.
‘You can’t have a conversation with Joyce, it’s like constantly serving a tennis ball without getting it returned.’
Michelle Naylor, 40, from Addingham, West Yorkshire and husband Rob, 46, a civil servant, admit that they too struggled to accept there was anything wrong with their youngest daughter, Hannah, now five.
‘She was a fractious baby who cried all day and night,’ says Michelle, who co-owns a housekeeping business and runs an after-school club. ‘But I’m a laid-back parent and didn’t worry too much. I thought it was colic, and by the time she got to two-and-a-half she was easier.
‘But she didn’t do the things that other children do. She was solitary, obsessive and her eye contact was a little off. Rob once said to me: “Do you think she’s all right” but I dismissed it.’
It was staff at Hannah’s playgroup who first mentioned that she was failing to engage in conversation. She was nearly three and they suggested that the couple ask for her to be referred for tests. Within a year the family were told she was on the spectrum.
‘I remember we were sitting in the doctor’s waiting room and on the wall was a poster about autism and I recognised all the symptoms in Hannah,’ says Michelle. ‘When it was confirmed, it was a tumbleweed moment. I didn’t cry. I simply felt like I’d been hit. I was numb.
‘But I also felt relief. Suddenly I had a diagnosis that would explain her unusual behaviour to other people who gave us funny looks in restaurants or shops, and that made me feel less stressed.
‘I also decided that autism was not going to define her. She’s not just an “autistic child”, she’s Hannah —cheeky, funny and beautiful.’
Hannah has high-functioning autism. It means she has good language skills and is social but doesn’t understand the world like other children — often taking it too literally.
‘The other day I got quite upset because one of the children in the playground called her a “poo-head”,’ says Michelle. ‘But to Hannah that meant nothing. She checked in the mirror, saw that her head wasn’t made of poo and got on with playing. It really didn’t bother her.’
Yet other childhood joys are off-limits.
'I always describe her condition to other people as if you’re standing out in the rain watching everyone else have a party inside and you’re never able to join in.’
‘Panto and dressing up are distressing for her, says Michelle. ‘If you dress up as a dog, it means you really are a giant dog to Hannah. She doesn’t get that it’s a costume.
‘She understands that she is different. She once said: “Why have you made me broken, not like Rosey” [her nine-year-old sister]. That really upset me but in fact, according to one of her teachers, this was a good sign. It shows she has some degree of self-awareness.
‘We are lucky that she was diagnosed so early and we are determined to guide her to a happy and healthy future. If she can maintain her self-esteem then there is a chance she could go on to marry and lead a relatively normal life. But we are nervous about the future — we don’t know what it holds.’
Nobody knows what causes autism. It can’t be cured, although it seems speech and occupational therapies at a young age can be beneficial.
‘It’s probably caused by a mix of genetics and environmental factors,’ says Claire Povey of NAS. ‘We see it run in families but we don’t know what else may be causing it. There is some early work going on as to which areas of the brain and which pathways are affected, but it’s just that, early work.’
Charlotte Bowers, from Barnsley, is 19 and has severe autism. She attended a specialist school from the age of 11 (where tellingly, there were only ten girls to around 200 boys) but her parents Susan, 46, and Andrew, 47, faced an uphill battle to get funding to help her.
‘Charlotte was one of the brightest babies our doctor had ever seen until she had her MMR jab when she was 13 months old,’ says Susan, who also has a son Corrie, 17.
‘Of course, we can’t prove that it was the jab that caused her autism [the vaccine has now been discounted as a cause] but from that moment, she lost her speech and is now like a two-year-old trapped in a 19-year-old’s body.
‘She has around six words in her vocabulary and she can’t go to the toilet herself. She has hypersensitive skin and ears. She can’t even stand having the seams of her clothes touching her, so I have to turn them inside out.
Gary McKinnon, who is facing extradition to America for hacking into US military networks, is a high-profile autism sufferer
‘She loves videos but hasn’t moved on from things like Noddy and Pingu. But I’m lucky. She has always given me cuddles — which is unusual for someone with autism.
‘She’ll give high-fives to other people, and if you ask for a kiss she may offer you the back of her hand, but that’s all. She lives in her own little world — and always will.
‘I always describe her condition to other people as if you’re standing out in the rain watching everyone else have a party inside and you’re never able to join in.’
Charlotte was first diagnosed at the age of three and Susan says the family were distraught.
‘This was in the early Nineties and we were sent away from the diagnosis with no information about how to cope with it and we just cried and cried.
'It was as if she’d died. We mourned the fact that she would never be a wife, she would never be a mother — and that’s such a shame because she’s loves little children.
‘But we had to pull ourselves together. We realised that she was still our Charlotte. She hadn’t changed and we’d just have to accept it. But it was hard with so little help and support. It’s getting better for families now, but there are so many cutbacks that I’m worried it might get worse again.
According to Susan, one of the main issues that girls with autism face is the onset of puberty. ‘Charlotte doesn’t understand what is happening to her body when she is having a period. She cries in pain with stomach cramps.
‘Because of her human rights, I can’t ask for her to have a hysterectomy. I was first told this by my doctor six years ago. I checked again two years ago with a paediatrician, who confirmed this was the case. We thought about putting her on the Pill to minimise the pain, but she has so many allergies and stomach problems that we decided against it.’
‘You can’t have a conversation with Joyce, it’s like constantly serving a tennis ball without getting it returned.’
The biggest fear for Susan is what will happen to her daughter when she and her husband are no longer around to care for her — a fear compounded by the fact she is a girl.
‘Who will look after her when we’re gone’ says Susan. ‘I know there are thousands of good people out there, but you only need one bad one to take advantage. I know that Corrie will take care of her if he has to but I don’t want his life held back. I didn’t have another child to make sure Charlotte had a carer.
‘I’ve been fighting tooth and nail with Social Services to make sure she gets the right care, but they always seem to put obstacles in the way.’
What is perhaps most touching about all three families is their optimism, patience and unconditional love for their daughters.
‘Yes, we’ve had some tough times, and Andrew and I have been under enormous stress,’ says Susan. ‘We’ve seen other marriages fail when the child has autism. But autism isn’t the worst thing in the world.
‘Charlotte is happy and cared for and I look at other families where children have taken the wrong path and realise that, in some ways, we’re very lucky.
‘If you’ve got arthritis, you’re not known as The Arthritic, so why should you be The Autistic It’s all about learning to love your children just the way they are.’