Download 'Too Hot', an exclusive Specials track from iTunes
Jacqui: "As a small child, Luke screamed constantly. In retrospect, I dealt with it very badly. I either held him or had him in a sling so he was close to me. Given what I know now, it probably made everything worse. As a toddler, he hated being touched. When he started walking, you couldn't hold his hands to support him - he'd go berserk.
I coped in a haze of exhaustion, surviving from one minute to the next. I was married then, and that was when the rot set in. My husband would get in from work and I'd hand Luke straight over and go and sit outside, just to have some peace.
When my husband left, my resources somehow stretched. You cope because you have to. I'm not saying my patience is endless. The other night, Luke was still up at 1am and I desperately wanted a bit of peace before Ben got up at 3am. I tried all the usual AS tactics to get him to go to bed, giving him instructions in sequence. All he'd say was: 'Are you going to make me?' So finally I said: 'Yes, I damn well am.' And I frogmarched him to his room. Then I had to sit there, talking to him all night while he cried.
You have to keep putting so much information into these kids about how other people feel, because there's nothing there to begin with. I try to explain to Luke that I love him but that he has to learn to see others' point of view. Of course, he doesn't get it: AS kids are hyper-rational, they have extremely poor imagination and no empathy whatsoever. Luke has to learn communication as if it was a foreign language.
Luke met two other AS teenagers at a conference recently and said: 'Hi. I'm Luke. Have you got a computer?' One lad said: 'Yeah, but I really like cars.' And he started on about cars. So Luke turned to the other lad and said: 'Have you got a computer?' And this lad says: 'Yes, but what I really like are trains.' And off he went about trains. At 15, all of them have learnt that they have to pause and smile and wait for the other to finish talking, yet none of them was really listening.
The worst thing is the feeling that your child is being rejected. Luke has been bullied all his life. He's been relatively happy this year, always talking about his 'mates', as if he belongs to a gang. But when I went into school for a parents' evening and Luke was waving to these 'mates', they were making sneery faces back at him. Luke was completely oblivious. On the last day of term, all these kids were hugging each other and saying goodbye, but nobody came near Luke. When one girl said, 'What about Luke?' they all laughed and said: 'Who's going to miss him?'
I very rarely mix with people with ordinary kids, because that way it's easier to cope. When we're on our own, we're normal. It's the outside world that makes life difficult."
Luke: "I've been trying to behave normally since I was about 10. Before that, I thought I was the only normal one and everyone else was weird. The realisation that I'm a freak hit me like a flash and it was horrible. That's when I decided I had to learn what to do to appear like everyone else.
To me, the world is a really difficult place. Just trying to understand what's going on around me is hard work. You try not to get it wrong, but mostly you do, and it's exhausting. I always feel left out at school, because everyone instinctively seems to understand the unwritten rules. There are all these social groups and I'm not in any of them. I just watch them. They could be talking in a foreign language, because it's all a mystery to me. I tell myself it doesn't matter, not belonging, but it does.
Not five minutes go by without someone saying: 'God, Luke, you're such a freak.' I don't know why they say it when they do. It must be because I've done something that they think is odd. I don't get them, either. They talk about clothes all the time, flick their hair and roll their eyes. To me, they're all freaks.
Mum doesn't talk in code or try to confuse me. She gives me advice about how to cope with bullying and how to fit in. She asks me about what happens at school, so she can explain what it means. One of the problems with having AS is that you take everything literally. Speech is very difficult to interpret when everything someone says could have a different meaning, depending on how they say it. I find it extremely hard to interpret facial expression. It's there one minute, gone the next. I'm left thinking: 'What was that about?'
When I found out I had AS, two years ago, I trained myself to make eye contact, even though I find it uncomfortable. And I try to alter my voice because everyone says I drone. Mum is completely blunt. I'll be talking about computers and she'll go: 'Luke? Shut up.' It sounds horrible, but it's actually a good thing. I wouldn't know when to stop otherwise. I would just go on and on, boring everyone to death.
I do try to think: 'How does Mum feel?' But I can't take it any further. Other people's emotions are a totally alien concept. With Mum, I can sometimes understand. I've looked at my own face in the mirror when I'm feeling sad and I've seen her look that way too. Most of the time I get it right, although Mum says she'd have to collapse on the floor so I tripped over her on the way to the computer before I noticed anything was wrong.
We argue about the computer constantly. I just find them easier than dealing with life. With a computer, you do something and another thing happens - it's totally reliable. Mum thinks 15 hours a day on the computer is excessive; I don't agree.
She says having teenagers is the hardest thing she's ever done, even compared to having Ben and Joe, who are so bonkers they're more work than the rest of us put together. Joe is completely wild - he's either charging around or ripping up bits of paper obsessively. I try to help. I take Ben on Cartoon Network on the computer, which calms him down. He's six, yet he's still in nappies. He can't read, he doesn't speak, but he's fantastic on the computer. The rest of the time, he flicks his fingers in his face and spins round and round.
I think I understand Mum to the same extent she understands me. She doesn't know it, but I do. She can put on a social face, just like I do. As well as looking after us, she's got a first-class degree, works as a volunteer on an autism helpline and does loads of writing. I think she's brilliant, but I've no idea how to show her that I love her. How do you do that? I really don't know, but I'd like to learn."
Win a luxury weekend to Newcastle and its neighbour Gateshead, find out more here
Risk, resilience and embracing new technology
Industry sectors news at a glance. Interactive heatmap, video and podcast
Discover the power of collective thinking. Submit a solution and be in with a chance to win a Media Hub Home Entertainment System
The inside track on current trends in the charity, not for profit and social enterprise sectors
Everything the Business Traveller needs to know to make a better trip
Make the most of the summer and enter our fabulous photographic competition, you could win a £5000 holiday
Corsica is an island of beauty and contrast, an ideal holiday destination
Enjoy further reading from Travel to Fashion, Business to Sport, discover more
Shortcuts to help you find sections and articles
The clever way to lease a new car is with Car leasing made simple™
2009
per month on 36-month
Personal Contract Hire (PCH)
2008
42850
Car Insurance
£24,250 - £30,346
MI5
London
£60,000
The Environment Agency
Bristol
Up to £90K
Boots
Midlands
OTE £85k
Credit Protection Association
Nationwide Opportunities
Completely London
Luxury Condo's in Manhattan with NYC views
The best new homes in Wimbledon?
Nationwide
Fabulous Cruise And Cruise & Stay Offers Including Virgin Atlantic Flights Prices Start From Only £699pp!
Last Minute Cruise And Cruise & Stay Offers. Med From £499pp, Caribbean From £699pp!
5 star quality at a 3 star price.
8 fabulous Canadian cities ...you won’t find cheaper
Contact our advertising team for advertising and sponsorship in Times Online, The Times and The Sunday Times, or place your advertisement.
Times Online Services: Dating | Jobs | Property Search | Used Cars | Holidays | Births, Marriages, Deaths | Subscriptions | E-paper
News International associated websites: Globrix Property Search | Property Finder | Milkround
Copyright 2009 Times Newspapers Ltd.
This service is provided on Times Newspapers' standard Terms and Conditions. Please read our Privacy Policy.To inquire about a licence to reproduce material from Times Online, The Times or The Sunday Times, click here.This website is published by a member of the News International Group. News International Limited, 1 Virginia St, London E98 1XY, is the holding company for the News International group and is registered in England No 81701. VAT number GB 243 8054 69.