I've been self-employed for about 10 years, following a career in advertising, design and marketing, working with some really wonderful brands and amazing organisations. I’ve been married for 25 years and I’ve got three children - a daughter who’s 24, a son who’s 22, and Joe, who will be 18 in October.
Joe had a perfectly normal birth via caesarean; my other two kids were caesareans as well. The only difference, and my wife noticed right from the off, was that his head was a bit bigger than the other kids when they were the same age. When Joe was born, I was in my 40s. I was working with FIFA then and travelling a lot. I was away at least two weeks in every four – travelling all over the world – so it was a bit of a juggle. But we had moved out to the country where we had a lot of support, and we were very lucky. We had a big garden, the kids were pretty self-sufficient, and my wife wasn't working then so she could look after Joe.
In a way, and this may be Joe’s earliest ‘diagnosis’, I remember that when Joe was a baby our Labrador called Toast would follow him everywhere. You move the baby, Toast is nearby. I don't know what it was, but she never left his side. And as he got older and older, she would always be very close to him.
Joe was diagnosed with autism when he was between 18 months and two years old. It wasn't an early diagnosis at all. It took a while, and we didn't force it either, but we knew things weren't right because he wasn't doing the same as our other two kids. Medically, we kept going to see doctors and they told us everything was fine. Then after about 12 or 18 months, there were still no signs of crawling, or walking or talking, so we went to various hospitals in the south-west, and they started running tests. They said they thought he had developmental delay because he was not progressing as expected and that, as he didn't react to stimulation or noises, he had some sort of autistic tendencies. But we were pretty well prepared for that because I think we had guessed as much.
We knew nothing about autism initially, so we started to explore all the different support networks that were out there, and I’d go to various local authority events to find out more. We didn't know what Joe’s options were, and the diagnosis was ongoing all the time. So we found a lot of information, and we also teamed up with two other families in the area who had autistic kids at different stages, with different types of autism. We've known them ever since Joe was born, and we still see them probably two or three times a year just to talk about the kids, which has been great.
As soon as you say you've got an autistic child, people go, ‘oh, Rain Man’, and they assume he's brilliant at maths, or he'll find something he'll be brilliant at; then we tell them that actually he's nonverbal. Autism is a broad spectrum. It’s not just Rain Man, or Stephen Wiltshire – he's the other one that always gets brought up – who’s brilliant at drawing. It took time to find out what his particular needs were, and that has changed over time. Now we're in a space where we're all very comfortable, because we understand his needs and what he's about, and the people around him understand him as well.
There were huge challenges along the way, but we met inspirational people that helped us. For example, we were convinced Joe would wear nappies throughout his whole life, and then a teacher at his first school said, ‘no, we're gonna sort this out’. The teacher, Gary, was amazing, and within 18 months Joe was pretty much continent. So you meet people like this who help you to work things out. There were challenges when it came to having dialogue with Joe, but you have different types of dialogue with him. Yesterday I went for a three-hour walk with him, and people will see us and say ‘you're not talking to each other’, but we have a great time. During the pandemic we went for a long walk every day. We did some massive walks and we’d discover whole new areas. All the time you're communicating, but not chatting away. We have a great time, and it's really good. My wife works for an Alzheimer’s group, and we did a 10-mile walk the other day to raise funds for them, and Joe chugged along. Towards the end, he was flagging a bit, but then we said the magic words ‘there's cake at the end’ and off he goes.
I remember for years, when he was little, people would say autistic kids will not react to you. For a long time Joe didn't, but now when we're walking, I’ll say to Joe ‘give me five’ and he'll give me five. So we do that and he is listening; he might be nonverbal, but he understands everything. He takes in everything. Like a lot of autistic kids he likes his life ordered and needs to know what's going on, so when we're on these walks, he constantly pulls a finger, which means ‘what's happening next?’ – I think it's his slightly edited way of doing Makaton (a type of signing language). As long as you tell him what's going on, he calms down and he's fine. You just have to take a little bit more care and time with Joe.
When you first hear about the diagnosis you wonder where we're going to go with it, but there's no point getting worked up, because it is what it is. Joe was a wonderfully placid, lovely baby. He's always been lovely. He does have his moments and loses it every now and then, but you can work through those. So the good times are very good. Yesterday, he had a sunflower from college and for some reason he didn't want to plant it, but we just worked through that and then he was fine about it afterwards. Now he points at it and knows it's his sunflower. You just have to be calm, because if we get worked up, he'll get more worked up. It's a negative cycle, so you try to keep it nice and calm when you're with him, and it's good.
When Joe became a teenager, hormones started to fly around. Like all teenagers, things are happening with his body. He isn't quite as patient as he as he used to be, and he doesn't understand certain things that are going on within him. But we're lucky, he’s easy-going, and as long as you explain things he calms down. I think college have taken a while to suss him out, like anywhere new; now they've got one-on-one care with him a lot of the time, he benefits from that, and they enjoy his company.
His sister Millie is very tolerant and very good with him, but she's starting out on her own life now and she's living in Brighton. When she comes home, she's very good with him. Sam is a classic boy: he won't say he loves him, but secretly I think he does adore his brother. He looks after his brother sometimes when we're off and about. He's not quite as patient as others, but then again, he's in his early 20s. It's really funny because Joe adores Sam – Joe just thinks he's the greatest. He'll follow Sam all over the place.
We always take Joe with us to family events and on holidays, and we’ll sometimes arrange special care with Joe so we can spend time with Millie and Sam. Joe's part of the family and we don't ever leave him behind. Before covid, we went to Portugal on a holiday with some friends from the States, who we've known for years and years, and their kids are the same age as Millie and Sam. All the kids are very good with Joe because they've known him since birth, and the parents are very good with him too, and he loves being with people. He loves crowds and noise, so when the family have a big event, he's very happy.
We've taken him to cricket matches, rugby and football, and he might put his hands over his ears when the noise is on, but he actually loves all the buzz. We took him to Alastair Cook's last test match at the Oval and he loved it – the bars, the noise, people coming and going. And towards the end of the day, everyone around was saying hello and he was being offered sandwiches and stuff. He didn't understand what the cricket was about, but he just loved the buzz. Mid-afternoon he had a little of a bit of wobble, but that was because he was a bit bored, so we went for a wander and came back and he was fine again. We try and include him in everything we do. Maybe Glastonbury would be a bit too far, because I think that would be a bit too noisy and out of the way.
In our village lots of people know Joe. We did try to do some inclusion in the local school, but they didn't really want him there, which upset us a bit at the time. They said he held back the other kids in the primary school, and it's sad because a lot of his peers in the village don't know him. But those who have families we know, are very good with him. It’s interesting because we used to have babysitters from the village – and before Joe goes to bed, you have to put him on the loo and go through a routine – and families in the village who did that would say ‘it’s only Joe, we don't care about wiping his bottom, we don't care about putting him to bed’. They've known him all their life, so they accept him. We've been very lucky that way.
When Joe turns 18, it’ll be a big milestone because everything changes: the admin side of his care changes, and we move from children's care to adult care. That starts a myriad of forms, ways of working and all the other stuff we have to do.
I can't see Joe moving out for a while – we've got a nice routine and a nice rhythm – but there will come a time when he has to be in some sort of assisted living. He does need someone around him, as the college found out, and someone needs to help him eat because he can't feed himself. He can clothe himself, but if he got up in the morning and didn't know which drawer the jumpers were in, he would wander around quite happily as he is. He just needs to be guided and have some people around him. So we've got to find assisted living in a place where things are happening – we don't want him sitting in front of a TV all day. He likes his walks, he likes to go out and about, and he loves being driven around. His college is about 40 minutes away and the bus to and from college is one of the highlights of his day. So, we want him to be in a place where they do things and he feels stimulated. We're just starting to look for that now. Hopefully, he’ll be at this college for the next three years minimum, and then after that we’ll find a residential place for him to live in. And that could be anywhere, so we’ll probably need to move house to be within half an hour of wherever he is and then he can come out with us. I think it'd be unfair on him to continue living with us as we get older, and unfair on us too, having to do a lot of the stuff we do at the moment.
What's the best thing that someone said to you about Joe or your situation with him?
I hear a lot of people say we do very well with Joe. They mention that we're very calm with him, and we did accept Joe’s autism very quickly. But he's part of the family, he's just Joe – I don't particularly think of him as being different. We do have to plan around him and I think people on the outside see that and praise us for it, but actually, to us, it's a bit of a false praise. I suppose as my generation gets older, a lot of people’s kids have left home now, so they're independent and flicking all over the place. So we might get a spontaneous phone call on a Saturday night asking us to come for a drink in the pub, and we’ll say we can't because we’ve got to put Joe to bed, or only one of us will go. They’ll say ‘oh, you're so good’ but actually it's just the way it is. It doesn't bother us massively. So when people praise us, we don't really feel we need to be praised.
What would you say to someone whose child’s been newly diagnosed with autism?
I'd say that there's definitely light at the end of the tunnel. The other thing is, it changes all the time. When Joe was little, we were constantly asked when he would speak. Now, he hasn't spoken, but at the time he was incontinent, wasn't walking, and he didn't walk until he was about five. We thought we'd have Joe sitting around incontinent forever, then we’d meet inspirational people who helped us to sort it out. Then he starts to walk, and then he starts to do other things. He's nonverbal and he's pretty lazy with Makaton, but a teacher at one of his schools found an iPad, which he can press buttons on, so he can say what he wants, show us bits and pieces, and suddenly, communication comes on. So if he's getting frustrated, we give him we the iPad, which we call ‘Speaky’. He presses it and shows us that he wants a bit of cake, or he wants to go to the swimming pool, or he wants to go for a car journey – so he can explain that to us. When it all started, that was a million miles away. So it gets better and things change all the time. He might speak to us one day, there's no reason why he shouldn't speak. I doubt it very much now, but you never know. Every day is different. He develops, he understands certain things and helps with certain things. He’s different to Millie and Sam but he’s on his path.
I would say that if you have a child who’s newly diagnosed, don't look at the negatives. There are huge positives out there. It's not the journey you thought you were going to have, but it's a really rewarding time. I love being with Joe, I love spending time with him. If my wife's out and about for a weekend, we have a great time. Now it's not the weekend I might have with Sam, but it's a different weekend and it's very satisfying.He's hugely rewarding, but in a different way. You have to find your space with that. But I don't see many negatives now and I didn't when he was diagnosed. You’ve just got to think of the positives and try to push forward all the time. It's not a negative thing at all, and there's lots of people out there to talk to and support from local authorities. Yes, they're pushed and they're under pressure, but if you're genuine with your requests, they're normally very good. Also, speak to your network; to use a Robin Williams’ quote ‘don't judge other people, everyone has their issues’. Just talk to people; that’s what we did with the families that we grew up with, and it's been great. It's not the path I probably would have written, but then nothing I've ever done is probably what I would have written!
