By Jill Foster
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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 Lawsonâs instinct told her something wasnât quite right.
âIâd never had a baby before so I didnât know what to expect, and the first thing that struck me was her bright blue eyes, fair hair and pointed little chin,â says Mary.
âShe was gorgeous. I expected to have amazing eye contact with her but when I gazed at her, she looked away.
âAs a first-time mum Iâd no idea if that was normal. But it didnât feel right and I even said to the doctor: âI donât know what to do.â The problems werenât obvious to others â" even my husband Jason didnât notice it â" so I let it go.â
But Maryâs instincts proved correct. When the couple brought Joyce, now nine, back to their home in North London, they couldnât escape the fact that her behaviour was unusual.
âShe didnât like being held against me and would wriggle to get out of my grasp,â says Mary, 45, a health and safety officer who now has two other children, Evelyn, seven and Christian, five.
âIt was heartbreaking, especially when she would cry for hours, but no âmagic cuddleâ from Mummy or Daddy seemed to help. When she was six weeks old I remember saying to my mum: âMy own baby doesnât like me.â
âIt was my sister, a primary school teacher, who first mentioned autism. She said: âWould you still love Joyce if she was autistic?â and Iâm afraid I said: âNo.â I didnât want to believe it. But deep down, I knew.â
Autistic spectrum disorders (ASD) affect more than half a million people in the UK â" 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 â" though not all â" 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 Hoffmanâs 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.
âWe are just starting to recognise the difference between how girls and boys present their symptoms and we suspect that girls are being under-diagnosed,â says Carol Povey, director of NASâs 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
âThatâs 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 âactâ as if they donât have autism. But that interaction is not ârealâ in an instinctive way, itâs a learned behaviour.
âItâs for that reason that some girls can go undiagnosed until they are in their 40s or 50s. We really donât know what the real figure of undiagnosed women is because different studies point to different numbers.â
For years, Mary and Jason refused to believe there was anything wrong with Joyce, preferring to focus on her amazing abilities.
âShe was so bright,â recalls Mary. âShe 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 âdifferentâ from all the other toddlers.
âBut when Evelyn came along 18 months later I couldnât hide the fact that Joyce was âtooâ different. With Evelyn, I felt like a proper mother for the first time and realised what Iâd missed out on with Joyce, and that made me sad.â
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.
âJoyce had always been aggressive,â says Mary. âShe canât 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.
âWe took her for tests and werenât surprised when the diagnosis of Aspergerâs syndrome (a less debilitating form of autism) came back.â
Mary admits that the fact Joyce is a girl made the diagnosis harder to accept for her family.
âAutism is a really unfeminine thing because what does a female ner d actually look like? Who are her role models?â she says. âYou want your little girl to play with dolls and say: âCome to my tea party,â but Joyce isnât interested in any of that.
âSheâs more likely to ask something random such as what kind of catflap you would be interested in buying, because to her, thatâs how you start off a conversation.
âAnd her aggression isnât what youâd expect from a little girl. Some people think sheâs simply being wilful. They say things like: âGive her to me for a week and Iâll sort her out,â and I just think: âOh really? Iâd like to see you try.â
Autism first came into the public eye with Dustin Hoffman's portrayal of a grown adult with the condition in the 1988 film Rainman
âOf course, we worry about the future and if sheâll ever get married. If a guy walked up to her in a bar and started a conversation with her, heâd wonder what the hell heâd got himself into and I wonât always there to protect her, so who knows what will happen?
âOne 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 canât express them.
âYou canât have a conversation with Joyce, itâs like constantly serving a tennis ball without getting it returned.â
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.
âShe was a fractious baby who cried all day and night,â says Michelle, who co-owns a housekeeping business and runs an after-school club. âBut Iâm a laid-back parent and didnât worry too much. I thought it was colic, and by the time she got to two-and-a-half she was easier.
âBut she didnât do the things that other children do. She was solitary, obsessive and her eye contact was a little off. Rob once said to me: âDo you think sheâs all right?â but I dismissed it.â
It was staff at Hannahâs 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.
âI remember we were sitting in the doctorâs waiting room and on the wall was a poster about autism and I recognised all the symptoms in Hannah,â says Michelle. âWhen it was confirmed, it was a tumbleweed moment. I didnât cry. I simply felt like Iâd been hit. I was numb.
âBut 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.
âI also decided that autism was not going to define her. Sheâs not just an âautistic childâ, sheâs Hannah â"cheeky, funny and beautiful.â
Hannah has high-functioning autism. It means she has good language skills and is social but doesnât understand the world like other children â" often taking it too literally.
âThe other day I got quite upset because one of the children in the playground called her a âpoo-headâ,â says Michelle. âBut to Hannah that meant nothing. She checked in the mirror, saw that her head wasnât made of poo and got on with playing. It really didnât bother her.â
Yet other childhood joys are off-limits.
'I always describe her condition to other people as if youâre standing out in the rain watching everyone else have a party inside and youâre never able to join in.â
âPanto and dressing up are distressing for her, says Michelle. âIf you dress up as a dog, it means you really are a giant dog to Hannah. She doesnât get that itâs a costume.
âShe understands that she is different. She once said: âWhy have you made me broken, not like Rosey?â [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.
âWe 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 â" we donât know what it holds.â
Nobody knows what causes autism. It canât be cured, although it seems speech and occupational therapies at a young age can be beneficial.
âItâs probably caused by a mix o f genetics and environmental factors,â says Claire Povey of NAS. âWe see it run in families but we donât 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 itâs just that, early work.â
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.
âCharlotte was one of the brightest babies our doctor had ever seen until she had her MMR jab when she was 13 months old,â says Susan, who also has a son Corrie, 17.
âOf course, we canât 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-oldâs bod y.
âShe has around six words in her vocabulary and she canât go to the toilet herself. She has hypersensitive skin and ears. She canât 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
âShe loves videos but hasnât moved on from things like Noddy and Pingu. But Iâm lucky. She has always given me cuddles â" which is unusual for someone with autism.
âSheâll give high-fives to other people, and if you ask for a kiss she may offer you the back of her hand, but thatâs all. She lives in her own little world â" and always will.
âI always describe her condition to other people as if youâre standing out in the rain watching everyone else have a party inside and youâre never able to join in.â
Charlotte was first diagnosed at the age of three and Susan says the family were distraught.
âThis 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 sheâd died. We mourned the fact that she would never be a wife, she would never be a mother â" and thatâs such a shame because sheâ s loves little children.
âBut we had to pull ourselves together. We realised that she was still our Charlotte. She hadnât changed and weâd just have to accept it. But it was hard with so little help and support. Itâs getting better for families now, but there are so many cutbacks that Iâm worried it might get worse again.
According to Susan, one of the main issues that girls with autism face is the onset of puberty. âCharlotte doesnât understand what is happening to her body when she is having a period. She cries in pain with stomach cramps.
âBecause of her human rights, I canât 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.â
âYou canât have a conversation with Joyce, itâs like constantly serving a tennis ball without getting it returned.â                                Â
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 â" a fear compounded by the fact she is a girl.
âWho will look after her when weâre gone?â says Susan. âI 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 donât want his life held back. I didnât have another child to make sure Charlotte had a carer.
âIâve 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.â
What is perhaps most touching about all three families is their optimism, patience and unconditional love for their daughters.
âYes, weâve had some tough times, and Andrew and I have been under enormous stress,â says Susan. âWeâve seen other marriages fail when the child has autism. But autism isnât the worst thing in the world.
âCharlotte is happy and cared for and I look at other families where children have taken the wrong path and realise that, in some ways, weâre very lucky.
âIf youâve got arthritis, youâre not known as The Arthritic, so why should you be The Autistic? Itâs all about learning to love your children just the way they are.â
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Mary needs to get over herself. I am female, have Asperger's and am 22. I've nearly finished my university degree and have a long term boyfriend who loves me for who I am. Asperger's doesn't have to be a hindrance at all. The daughter can have whatever role models she likes - I would suggest Temple Grandin, for one, and some of the great scientists who may have a similar way of thinking to her. It's hard enough to be an aspie girl without your parents forcing traditional "feminine" characteristics on you along with the rest of society. So she doesn't want dolls, so what? Plenty of parents manage to cope with that trait in girls that aren't even autistic, yet there's a huge drama about it where Mary is concerned. DM, stop finding MMR conspiracy theorists to wedge into every article. There is no link. Measles, mumps and rubella kill and disable children.
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Good luck to all these parents and their autistic children. The figures are climbing so we need to clean up our environment and what goes into our bodies........... There is a gentle therapy called Metamorphosis or Metamorphic Technique depending on where you go - it that has a good record for helping both parents and children. I have worked on a little boy with it and it really improves the eye contact and tantrum side of things. It is really easy to learn and you can even teach your child to treat you which is a great rest for parents. It is working on the feet but is more subtle than reflexology.
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