“I don’t want to sound a moan”, says Charlotte Moore when we’ve moved on to the subject of money. But moaning is the last thing Charlotte does, so I don’t know why she feels the need to apologise. In fact, it’s her moan-free tales of life that make for such great reading, and that’s the main reason I have asked if she could spare some time to talk, while she’s in Cheshire for a conference on autism.
It must be about seven or eight years since Charlotte started her column in the Guardian, writing about her two autistic sons, George and Sam. It didn’t take long for me to become a fan, looking forward to each new column for a light-hearted and amusing view of living with autism. Her situation as a single mother of three boys would never seem all that easy anyway, but add autism and I simply couldn’t see how Charlotte could cope so well and stay sane at the same time.
When the newspaper columns were turned into a book about four years ago, I was one of the first to buy it, and when, later that year, I found there was to be a conference on autism at my local hospital with Charlotte chairing, I hurried to sign up for that as well. The evening before the conference Charlotte did a talk for a local bookshop, which was so well attended that the event had to be moved to a larger venue.
By the time we meet in November 2008, Charlotte has been back four times, and I’ve faithfully attended the conference every year. I’ve been struck by how calm and normal she always seems.
The boys are growing up fast. “George is nearly nineteen now.” It’s his last year at school, and the real problem is for when he leaves. Charlotte is looking at different places, but has found nothing perfect so far. “Sam is nearly seventeen and has almost two years left at school, so he’s OK for the time being. Jake is in Year 6 at primary school, and has a Year 6 attitude. He’s mad on football and has friends around him all the time, so very normal.”
I ask what the options are for George after he leaves school. “It’s becoming even more obvious they have different needs. What works for George won’t work for Sam. George has come on a lot socially in the last couple of years, and he’s now really quite sociable. He’s deeply eccentric, but he does actually enjoy the company of other people, particularly of his own age. Whatever he goes on to, it will have to have a social element. But at the same time he needs a lot of supervision. He still has no common sense, or sense of danger, or sense of responsibility.
I want him to be partly away from home, but not 52 weeks a year. I’m looking at residential places, but locally, to come home at weekends. He just started weekly boarding now, and he loves it, but that’s in a familiar place. It’s getting the balance right, providing huge amounts of support and protection, at the same time acknowledging that he is developing, he’s growing up a bit. My ideal would be for him to stay at school until 25. I think that would do him a lot of good. Most places concentrate on working type things, horticultural stuff, etc. George isn’t ready to do that all day. For me there has to be some learning going on as well.”
I wonder if it’s difficult to get a place for George when Charlotte finds somewhere. “The government has no obligation to do anything at all. You may be offered a place, but will you get your funding? There’s no guarantee that you will, and if you don’t, then that’s it. Social services, who usually provide funding, but not always, are very likely to make you go for cheapest option.”
Do they ever suggest he should stay at home? “No-one has said that in so many words. No. Sam is not ready to leave home, and George is. Therefore home has to be geared up for Sam’s needs, not George’s and that’s a major factor why George shouldn’t be at home all the time. For Sam I lock everything up, still, and that means that George can’t be independent. He literally can’t get the toothpaste out to brush his teeth. If it’s not locked up Sam would squirt it round the room. If George stays at home he will be infantilised. The problem is I’m not prepared to say I can’t have him at home or I’ll have a nervous breakdown, because I won’t, but parents do say that in order to get something. You have to. I’m hoping people will think that George and Sam need a life beyond that.
Sam is very different. Sam is socially pretty much entirely aloof, and to be honest, Sam going to school is to leave me a break. He’s happy enough, goes off in the taxi. He does what he wants all day. (Laughs.) Sam is quite impenetrably autistic. It’s quite difficult to teach him anything. I don’t believe he gets anything from being with his peer group. He just ignores them. On the other hand, he gets something from being with the staff, and from some of the activities. But I think the future for Sam is not going to be community based.
You know, George needs the community. He enjoys it, he feels part of it. For Sam I may look at some kind of set-up for him at home, where people come in to work with him or to take him out and do things with him, but not actually going to a college or to work. Sam likes being at home, he really does. So, two very different sets of needs, even though they have the same diagnosis.”
I ask Charlotte if she is going to write more about them. “Yes, I am. The book George and Sam is out of print, and Penguin want to reissue it with a new chapter. Update it. So I’ve got to do a new chapter about adolescence. I’m not at the moment planning a whole new book about autism, partly because I’m doing other projects, and partly because I do feel I’ve got things to say about adolescence, but I haven’t got a whole book’s worth.”
Charlotte and I recall the woman at the first autism conference in 2004, who had an adult son in his thirties, who simply wept when asking the experts what on earth she could do. Charlotte reckons “There’s some improvement, but it’s still bad. The NHS says you should just live at home with ageing parents. That is really quite awful. And the number who don’t really have much to do, with no structured day. In the holidays George has a bath which takes all morning, and then he has lunch all afternoon, and then it’s time for tea. (Laughs.) He does everything so slowly. He’ll just drift along, you know, choosing what socks to wear. That takes all day. Neither boy will do anything very constructive unless pushed. Actually Sam does more than George. Sam goes off and does colouring and keyboard, and will do jigsaws. If you set one out, he will do it. He might be better at it than George, who will literally get out a sock and look at it, and hang it up to dry, you know, and spend the whole day. Yes, he’s quite happy. I will say that George is actually quite a happy person. He might be happier than a lot of 18-year-olds who are perhaps torn with anxiety and so on.”
I wonder if the boys have grown up at all, as regards their tastes in watching television or DVDs, or if they are still on Pingu. “We get CBeebies. They have the CBeebies channel on all the time. Music wise George is quite sophisticated now. He listens to a huge range of music. They don’t watch the same thing over and over again any more. Sam likes cookery programmes. He won’t ask for them, but if they’re on he enjoys them. George shows a little bit of interest if I’m watching something. He will say ‘that man is cross’, or ‘that man is doing this’, so it shows he’s taking something in. If George sees young boys playing football he will ask ‘Is that Jake’s team?’ He does sometimes ask me what I’m writing now, as well. He’ll say ‘You’re not writing about me, I hope!’. He’s interested in people, so he will want to know who was on the phone, for instance.”
“So they aren’t watching things like Doctor Who and Torchwood?” “I haven’t particularly tried it. I think at school George probably watches things like that. And they will watch any music that’s on. They quite enjoy that. And books. George will still fish out his children’s books, his young children’s books. He can read, and he will plod his way through a slightly older book, a book with chapters, but probably aimed at nine-year-olds. He doesn’t read anything that’s age appropriate. Sam doesn’t read, but he will look through lots of books like cookery books and anything with big clear photographs. He will also fish out his old Kipper books, or whatever. They haven’t moved on that much in that way.
They show no interest in clothes or anything that teenagers usually like. George had the school prom at a local hotel, and he just wanted to wear what he wears every day, and when he got there and saw everyone in suits, he wanted one. So school managed to fish out a suit and tie for him and he actually enjoyed wearing that. He had a buttonhole, but when he got home Sam took the buttonhole and threw it down the toilet. (Laughs.) They are very childlike, really.”
One of the subjects at last year’s conference was sexuality, so I ask Charlotte about the boys and sex. “I think I’m very lucky, and it’s a sign they are really, really different and, I suppose disabled, that they don’t appear to relate sex to human beings. It makes life MUCH easier. They are both sexually mature, but they have been well trained by school to know that the bedroom is the place. As far as Sam is concerned I think it’s a 100% physical feeling. The same as being hungry, there’s no difference. George perhaps has a tiny awareness that there’s a human emotional element to it. He’s a very long way off having a girlfriend or anything, but I think he might one day, you know. Then we’ll have to be very careful how we handle that, but he doesn’t talk about it or ask questions about it. There are girls at his school, which is not all autistics, so there’s more girls. At the all autistic unit there were no girls. Now there are quite a lot of girls actually, so it could be an issue, but not so far. He sometimes looks a bit harder at pictures of girls in bikinis than at a picture of a car, but not anything like you’d expect a boy his age. That’s quite a relief for me at the moment. I don’t have to confront too many things.”
I have enjoyed all the quotes from life with Sam and George in Charlotte’s writing, so I ask if she takes notes all the time. “Well, I really regret it, but I haven’t done it nearly so much since they’ve been older. I don’t know if it’s time, or if it’s things you do more when they’re little. So, I used to jot it down. Now I very occasionally do, but I really regret I haven’t done it more. My partner is always saying ‘oh you should be writing things down’. I used to keep a notebook, which is actually a family habit. My mother did it for us, and my grandparents even. So it’s a bit like keeping a photo album. It’s what we did, and I’m very glad I did.”
Charlotte often describes what must have been quite awful details of what the boys do, with such humour, and I ask how she manages it. Last year’s conference visitors were entertained with the tale of Sam misunderstanding something, and attacking a teacher and being temporarily expelled. “You have to see the funny side. If you took the tragic view of it, then it would be difficult to live with. I do find them funny, but I don’t find them funny at the time. There’s a lot of humour in the incongruity between the norm, and how they deviate from the norm. And the boys (deviate) all the time.”
I ask what a typical day for Charlotte is like. “It’s become a lot easier since George started boarding. It’s become a lot shorter, because George stayed up very late, so now in the week I can go to bed an hour earlier, which is great. On a normal weekday Sam is off in the taxi at eight, and I get Jake ready for school, which is very local, and I’m back home by nine. Then I work or do the other things I want to do, until I pick up Jake at 3.25. Then Sam comes home, and some evenings he has a tutor coming in for a couple of hours, to help him. Weekends George comes home and turns the place upside down. But it’s also nice to see him. Another big improvement is George’s diet. He now eats a lot, and quite a wide variety, including vegetables. He still has to have the brown sauce and the red sauce squirted on them but he eats tomatoes and avocado, and he enjoys food and he enjoys going to restaurants and cafés. That’s a huge relief, from a health point of view and it’s easier. Sam eats more, but he still eats pretty much junk. He’s expanding a bit, though. He used to eat a sausage and spit it out. Now he will actually swallow it. A big improvement. Sam still doesn’t eat fruit or veg, really. Hardly at all. Smoothies, or whatever, but that’s all.”
Sam used to be on a special diet, so I ask about that. “No. I decided to try taking him off it. He was on the gluten free, etc, and I thought he’s finished growing, probably, so I thought I’ll see. I re-introduced it and he’s been OK. One thing he reacts badly to is msg, so I try and minimise that, and also aspartame. Sometimes Sam has a crying fit and I think it’s probably food related. It’s much much rarer than it was. In the past it would have been every day, but in half term only twice in over a week. Sam is eating more in bulk, which is good because he was extremely thin and looked like a Russian street child, pale and thin.”
Does she still read books on autism? “I do. I tend to get sent them every now and then, either to review or people send them to me. The best one this year, the most interesting, was called “Unstrange Mind” by an American called Richard Grinker. He’s an anthropologist and has an autistic daughter. His line was to look at different countries’ view of autism and also how they treat it or educate. That was really interesting because it was the way different cultures, different societies, how it reflected their preoccupations. In South Korea if it’s an inherited disease, it makes other children less marriageable or even less employable. The preferred diagnosis is blaming it on the mother. In South Africa the older generation believe witch doctors are needed to expel evil spirits.
I review other books, as well. I nearly always have something I should be reading, but I wouldn’t want to go through a year without reading any books on autism. They crop up naturally. I like personal stories, but also more academic books.”
Will she write more children’s books? “I did Elizabeth I, Florence Nightingale and William the Conqueror. I’m not doing any more for that series, which I think has come to an end. I enjoyed doing them, but to be perfectly honest the pay is so bad! You do masses of research and it’s terribly interesting but you end up with the equivalent of a couple of articles in the Mail on Sunday. I’m doing a children’s novel at the moment, which is set in Victorian times and it’s based on a relation of mine. I have lots of diaries and letters and things connected with her. So I’m trying to make the story into a novel for probably 12 to 13-year-olds, but I haven’t got very far with that yet.”
Any more adult novels? I published an adult novel earlier this year. The hardback came out, to a not very great amount of publicity, so I’m hoping when the paperback comes out next year it will be a little more visible. This one’s called Grandmother’s Footsteps. It’s not really romantic, it’s about people and relationships. My natural reader would be a kind of literate middle aged woman, as it were. I don’t think I’ll write a novel with a massive theme, because I don’t think that’s really me.
I’m writing a book apart from the children’s novel. I’m writing about my family and the house where I live, which is a family house. I’ve got all these letters and diaries, for making a narrative out of. That’s very time consuming and for me very absorbing. As a family we’ve had a habit for generations of writing things down. There’s a lot of stuff . I’m trying to make it into a bit of social history, how people lived, and just bring to life voices of the past. My belief is that all families are interesting, but my family just happens to have all this stuff written down and observed in one place. So, yeah, I’m sort of preoccupied.” There is a paragraph in George and Sam about Charlotte’s grandfather, who kept a diary. One example of what he found important to record, is his note of having changed his razor blade, and he knows exactly how many days he had used the old one.
I decide to get personal and ask Charlotte if she can live off her writing. “It’s a very good question, because it’s one thing people don’t talk about with children with disabilities. They are expensive. I can just live, just. But my time is hugely eaten into. Any mother’s time is, but I have to do a lot more, meeting social workers, or whatever. So in my five day working week, quite possibly two chunks of that will be taken up with something to do with the boys. And, of course, once they come home I can’t do very much at all. What I can earn, we can live off, just. If it wasn’t for them, it would be much more. I could do a lot more journalism. To come up here to do this conference I will get my expenses, and I will get my fee, but that will be sort of wiped out by paying to have the children looked after. It’s not meant to be a grumble, but I’m bailed out frequently by friends and family. For instance George’s weekly boarding. The council pay his day fees, but when I said I’d like him to board for his last year, they wouldn’t fund that. So I thought ‘well, that’s that’, and then his Godmother said she would pay. It’s an incredibly generous gift. I’ve been extremely lucky. I don’t have £9000. I might have borrowed it, but then I’d have to repay it. A lot of the treatments I’ve tried; people and family have helped me out with. It’s expensive. On the other hand there’s lots of things I don’t have to buy the boys.”
It seems to me this is typical Charlotte Moore mode. She can see so much that is positive in her family situation, where many of us wouldn’t have the strength to do so. I can think of a lot of people who would qualify as moans, but not Charlotte. Her stories of George and Sam and Jake entertain, and they also reassure the rest of us. That’s why she is so interesting, both to read, and to talk to.
Charlotte mentions an interview she conducted recently, where the couple in question wanted a flattering, praising piece written about themselves. She didn’t like what they were saying, so decided not to write up the interview. There’s no need for any thoughts in that direction with this interview.
(Photos by H Giles)
As a mother of a grown Asperger´s (light autism), I found this post really interesting. Thanks!
After some troublesome years we consider ourselves very lucky, however. Our son studies math at a Danish university, lives on his own in a flat and does quite well. He is also much happier today than when he was a teenager. Your teen years are horrible if you are conspicuous in any way, and autists will be!
Charlotte’s column in the Guardian began just as I was desperate to read about such things. Her knack for humour, when I just felt like murder, was most welcome.
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Such a refreshing helpful Post, thank you from a mum of asperger children in need of supportive information.
Glad you liked it, Gillian. Charlotte is a great inspiration.
Reading this as one of Jake’s friends from school, both this article and the book itself have been very informative for me. I did not realise how bad Jake’s family had it. I hope Charlotte continues to write more books on the subject, and that I always stay in contact them. I have seen George occasionally at the train station, and I find it remarkable how independent he has become.
I know what you mean. Charlotte has always looked a picture of calm when I’ve met her.
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My friend has 2 boys who have autism, they are 16 and 19 and very similar to your boys. I phoned her this morning to say that you were on television and that she should tune in. she watched and shed a tear. I was with her later on and she spoke about wanting to make contact with you?If this could be possible please could you e-mail me contact details i could forward to her?
Another great read/discovery for me. My son has MR and autism, age 31, and we’re now dealing with recurrence of violent outbursts. Not fun.
Thanks so much for this.
Yes, I can understand how hard it must be. Sometimes the only thing that ‘helps’ is finding out others are going through something similar, and maybe learn what they are doing.
I found some of the conferences Charlotte has chaired quite harrowing. Real life cases direct from the parents beat any expert’s opinion.
hi I’m david nicol I used to know Charlotte hi Charlotte how are you I thought it be good to try to make contact its been a long time since Westminster phab hope to hear from you Charlotte yours david