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My son is autistic but I still feel so blessed

By:SARAH OLIVER
Date: Mon,22 Oct 2007
Submitter:unknown
Views:32550

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Emma Noble: My son is autistic but I still feel so blessed
By SARAH OLIVER

Emma Noble heard her small son choke. She turned to his high-chair to help him swallow his troublesome mouthful and realised he was trying to call for her.

"He was saying, 'Muh, Muh,' but the word wouldn't come," she recalls. "I asked him, 'Harry, are you saying Mummy?' and he tried again. 'Muh, Muh,' was all he could manage.

"There was this dreadful moment between us as I tried to get him to articulate a word he knew well but he just couldn't.


Devotion: Emma exudes happiness as she relates the achievements of her son Harry

"His little chin drooped on to his chest and there was an expression of absolute defeat on his face. He looked like a toy robot whose batteries had run out."

Emma did not know how her son's language had vanished. Nor did she understand why his eye contact was failing.

She thought some of his habits – lining up his dinosaurs by size and colour co-ordinating his cars – were endearing rather than odd.

She was aware he could not eat food which touched other food on his plate. She realised he thrived on ritual and routine rather than the chaos of childhood.

But she did not see the sum of them: autism.

Harry, the only child of the celebrity model and actress and her ex-husband James Major, son of former Prime Minister Sir John Major, was diagnosed with autism four years ago.

But it is only now Emma, 36, has navigated a path for the two of them through the parallel world of special needs that she feels able to speak publicly of his suffering.

"I could not live without him and I would not want him any other way," she says.

"My life would be empty without my son and the experience we have been through together. His autism makes him who and what he is and I love him.

"He makes it easy for me to accept because he makes me proud every day, proud of his achievements and of how hard he tries.

"There is no part of me that mourns the mother I could have been to a son without his condition. I simply don't know that person."

Emma protects Harry, who is now seven, with the kind of ferocity a lioness reserves for a favoured cub, and when she speaks of his achievements she exudes happiness.

Yet her life since she fled the flashguns that once illuminated her stellar career has been complex, careworn and, on occasion, profoundly lonely.

She is perched on a leather sofa in the living room of her home in a Cambridgeshire village.

Harry's toys, books and videos are scattered about and photographs of a dark-haired boy with chocolate-drop eyes and a wide smile cover her shelves. It's all very normal.

"That's the thing," she says. "An autistic child begins life normally. Harry passed all his milestones – walking and talking – at the right time.

"He was a happy, healthy baby growing into a happy, healthy child.

Unlikely couple: James and Emma in 1999

"The changes are wrought over a matter of months, maybe two or three. I know in the great scheme of a life that is virtually overnight but they're so small as to be imperceptible at the time.


"Yes, he had some unusual habits such as spinning around the room like a top and asking repeatedly, 'What's that?', but I found it so appealing I used to video it. I never used to think, 'This is totally out of context and perhaps I should be worried.'

"Gradually Harry started pulling me around to get what he wanted instead of speaking to me. He'd drag me to the kitchen cupboard and point to food or across to the television and put my hand on the controls.

"He stopped saying 'Hello' and 'Goodbye' to people he knew and finally he stopped answering to his own name.


"I just thought he was being lazy and that once he'd cracked something new, like a word, he couldn't be bothered with it any more.

"He was my first child so I had nothing to judge him against. For me, there were no alarm bells until the incident in the high-chair.

"You can't see the truth about your own child, you simply don't see the negative. Of course, there were other signs.


"Harry had always been adept with a knife and fork, he'd use them properly and would sit in his chair and say, 'Broccoli, please,' like Little Lord Fauntleroy.

"It was a family joke. One day, I realised he no longer had any idea what to do with his cutlery. The knowledge had just gone.

"And we were asked to leave Tumbletots [a gym class for toddlers] because he refused to join in with the other children.

"The leader was gentle and kind and suggested he might benefit from an assessment and a visit to a special needs gym.

"That was the first time anyone had used those words to me and I was devastated. I sat in my car and cried.

"But then I got home and told James we'd been chucked out and he was so upbeat and funny. He said, ;Harry, you've been expelled from Tumbletots, that's very rock 'n' roll,' and he cheered me up so much I forgot about it."

Sadly, however, that mutual support between husband and wife was wearing thin.

It was always, on paper, an unlikely union. Emma had risen from lad's-mag favourite to prime-time television presenting and the fringes of a serious acting career.

She was ravishingly sexy and, thanks to a working-class background growing up on a council estate as the daughter of a printer and a nurse, was extremely hard-working.

She might have looked every inch the ingenue, but she had a firm grip on the business side of showbusiness.

James, a sometime nightclub entrepreneur, had failed to make his mark as a novelist, as a dot.com boomer or even as a man about town until he began courting Emma.

Their burgeoning relationship was played out in a frenzy of tabloid headlines and their 1999 wedding in the crypt of the Palace of Westminster, followed by a lavish reception at The Dorchester, netted them a £400,000 deal from Hello! magazine.

There were many who said it would not last. In March 2003, they were proved right when James left the marital home to live in the Scottish Highlands.

"It is sad," admits Emma, "that our marriage came to an abrupt end just as we were discovering the extent of our son's problems. It is important that everyone – above all Harry – knows they weren't connected, that the one did not cause the other."

She is respectful and discreet about her ex-husband, who returned to his home town of Huntingdon in 2005 and now cares for Harry every other weekend.

She refuses to criticise him and describes relations today as "friendly".

But the very fact that she was a single mother when she was first officially told Harry was autistic – and that James chose to stay in Scotland for a fortnight before coming to visit them – must have compounded her pain and sense of isolation.

In May 2003 a specialist paediatrician came to assess Harry at home. Emma says: "Harry would not even answer to his name. I was physically turning his face towards the doctor, willing him to co-operate like some dreadful cheerleading mother.

"I was praying for him to prove everything was fine. At the end of five hours I said, 'Do you have any findings?' and she said, 'He's very bright.'

"Just as I was thinking, well, I know that, she added, 'And he's autistic.'

"Ridiculous as it sounds, the only thought in my mind was, 'What, do you mean like Rain Man [the film in which Dustin Hoffman plays an autistic man]?'

"That showed my ignorance and how little I knew about autism at the time. I swear I couldn't get her out of my h

ouse fast enough.

"I wanted to hunt and hunt and find a condition which matched Harry, something temporary, less worrisome, not so life-changing for my little boy."

That night she typed the word autism into the internet for the first time and she knew, as she scanned the numerous websites and bulk- ordered ten books on the subject from Amazon, that she'd found the missing part of her boy.

They have come a long way since then, but life is tricky because Harry is hostage to his rituals and anxiety that can keep him awake for all but 90 minutes a day.

Emma reveals: "Harry needs to know what is going to happen and in what precise order. There can be no surprises and definitely no dramas.

"For example, he needs me to tell him what is going to be inside a wrapped present before he opens it.

"He pictures it to be something that he wants and then, if it's not what he had in his mind, he can't understand what went wrong.

"When he goes to bed he might have to touch the curtain a specific number of times and then similarly flick the light switch, climb the stairs in a particular way, ask if the cats are in their room, check the hall light is on and that the door is open at precisely the angle he wants. And he might make these checks 20 times.

"If he's worried he's done them wrongly, he'll have to get up and start again. And he's very literal.

"I once said to him, 'Harry, hold your horses,' and he came back with two horses out of his toy box. I can't use everyday phrases.

"If I said so-and-so had bitten my head off he'd be puzzled and say, "But Mummy, it is still on your shoulders.'

"Speaking to him correctly, beginning every sentence with his name, is second nature to me. It's like having elocution lessons, you can't ever go back."

Harry retains the photographic memory for puzzles that was one of the early signs of his condition and has added to it a gift for memorising books he can recite at will.

While he does not understand the concept of empathy – he once stepped over Emma when she had fainted and told her he was too busy playing to bring her the phone – he can re-enact a film with feeling because he has imprinted the appropriate emotions in his memory.

Crucially, thanks to Emma's diligence – and the support she has received from her parents, whom she describes as "her strength", her sister, who is a doctor of clinical psychology and has done extensive research into parents' experience of children affected by autism, and the National Autistic Society – Harry has found his voice again.

And now his mother is ready to find her own. She has been privately and extensively involved with fundraising for the NAS, to which she recently gave the proceeds from her appearance on reality TV show The Farm, and has now taken the decision to go public.

She says: "I don't want my son growing up in a nation which is ignorant, where people do not know the reality of autism. That's why I am backing the work of the NAS to increase awareness.

"Of course I worry about Harry's future but if he needs to be around me until I am an old lady then so be it.

That said, he has amazed everyone with his progress and I think he will grow up to enjoy a job and a relationship."

Emma is also preparing to start work again. She mothballed her own ambitions to care for Harry and has never been able to turn to James – whose career could politely be described as erratic – for financial support.

Instead she has lived off her savings and investments but, as she says: "I've got to put food on the table for us."

It's hard not to wonder if Harry's eminent and wealthy grandparents, who live just four miles away, could help.

Emma looks aghast and it's clear she views providing for Harry as her responsibility.

She is diplomatic about the Majors' input, saying: "I'm sure they love their grandson very much but they are busy people.

"They have him to stay when they can and John sends him postcards from wherever he is in the world."

I ask how the former PM and his wife Norma, who is vice-president of Mencap, reacted to news of Harry's autism.

She can't comment because she told them by letter. And that, in itself, speaks volumes.

She seems pragmatic and without self-pity. The only time her eyes well up is when I ask her if she misses the old Emma, the carefree girl who was never, ever on the wrong side of the red velvet VIP rope.

"No," she says resolutely. "I have a much better life because of Harry. I am a fuller person, a more learned person. I was an idiot back then, as it turns out."

She belittles herself, for she has fought her way through the labyrinthine bureaucracy of special needs that defeats many.

First, in 2003, she secured Harry a place at a playgroup for autistic children and then, later that year, a position in a mainstream nursery.

Finally, a year later, she won him a Statement of Special Educational Needs, the document that is the key to a child's future.

It gave him the maximum 32.5 hours a week one-to-one support from a specially trained teaching assistant, allowing him to attend a mainstream primary school.

She was, at the outset, nervous that her celebrity might set her apart from other mothers in her position but she has found special needs to be a great leveller.

"I was thrust," she says, "into a world of autism, a whole community of people I had not known was there.

"I was amazed at what opened up before me and I realised I had kept my eyes closed to it all before."

She refuses to ask "Why Harry?", saying: "I could tear my hair out every night wondering why. There is no autism in either family and Harry did not have the MMR jab because I knew there was controversy over potential links to autism, which is ironic, really, given that he has it anyway.

"Whether that's because the incidence is rising or because we have better diagnostic tools I don't know.

"But I do know we have to deal with it and I hope I am now sufficiently informed to help.

"I don't want to betray Harry but it's only a matter of time before someone asks about my connection to autism and I have to tell them I have been gifted an autistic son and that I feel blessed to be his mum."

On her doorstep is a meerkat holding a camera, a joke against herself and the paparazzi who still sometimes await her there.

It tells you all you need to know about the life she once lived.

As I step past it, she says: "I want people to understand that autism doesn't mean a lesser life, just a different one.

"I want people to know just how wonderful these very special children are and how much joy and love they bring to the lives of those lucky enough to know them."

And then she turns on her high, purple heels and leaves to collect her beloved son from school.

I can't go with her because for Harry, having a stranger in the car would be tantamount to disaster, destroying his fragile equilibrium for the rest of the day.

And that tells you all you need to know about the life she lives now.

The fee for this article is being donated to the National Autistic Society. For more information about autism and for help in your area, and for further information on any of the NAS services, call the NAS Autism Helpline on 0845 070 4004. 10am-4pm, Monday to Friday (local rates apply), or visit the NAS website, www.autism.org.uk. The NAS Think Differently About Autism awareness campaign launches on Monday, October 29. It aims to enhance public understanding of autism, which is a serious, lifelong and disabling condition.
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Comments

valerie morrison said:

I too have an autistic 20 year old, he was diagnosed with Autism last year, it took all those years to be finally told what I knew for years but no-one would take me seriously, he was Statemented at School, I tried to get help for years until a Lady who specializes in this condition diagnosed him. I had asked authorities for years until it was finally proved. I fought to get my son in to a school which could give him a one to one, I threatened the Education Dept that I wouldn't let him return to his mainstream school because they couldnt teach him anything, they finally agreed and he started at a wonderful school for children with disabilities, it was the best thing that i have ever fought for.
Tue,27 Dec 2011,19:29:35 GMT

Sandra McFadden said:

founder of the midsummers (autism awareness group) charity. I have some good ideas that you could use.
It worked for us.
Fri,07 Mar 2008,04:03:30 GMT
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