I’ve been a north-west London boy all my life. I’ve been married to a lovely lady for 27-and-a-half years, and I've got two sons: Max, who's 25, and Oliver, who’s 22. I had a normal upbringing; my parents divorced when I was a teenager, but oth-erwise I've been very lucky. I still am to be honest with you.
My son Max is what I would describe as profoundly autistic; he's pretty much nonverbal. He is also an incredibly happy young man, and despite flitting between happiness and unhappiness over the lockdown period, he's in a very good place at the moment.
We were the first of our friends to have children. I was 27, my wife was 26, and we didn't know what we were doing, just like most parents. It was a normal pregnancy, and developmentally Max hit all his milestones for the first six months. He wasn't quite walking when he should have done, but I didn't think there was anything to be overly concerned about. Then he started losing some of his words – the language he developed he’d lost a little bit. We couldn't work out was going on, and I think I was pretty frustrated about it at the time. He would put his hands over his ears too. So, around 18 months into his life, we saw an audiologist, who told us ‘Don’t worry, children go at their own pace, he'll be fine’, the sort of thing we probably wanted to hear. But there were certain tell-tale signs - nursery was tricky, he still wasn't talking, and there were some other behaviours we’d noticed.
We went and saw the head paediatrician at one of the largest hospitals in London, who told us Max was fine and definitely not autistic, but alarm bells had started to ring. And although autism had a name, we didn't really know much about it at the time. There was Lovaas in America who'd come up with applied behavioural analysis, and so we thought maybe we should get maximum therapy prior to his diagnosis. We had a young girl who would do some exercises with him to try and get him to catch up with school, but kindergarten was a real struggle, so much so that the headmistress came to tell us she was really worried developmentally about Max. We didn't know where to go – we got pushed and pulled to a few other places. Another diagnosis was pervasive developmental disorder, and we thought ‘well, at least it's not autism’.
It wasn't till Max was three years old that we got a formal diagnosis. I was hoping to hear that he was mildly autistic. But based on what I know now, Max was typically autistic. It was a hammer blow. I think if you have a child with a disability and it's prevalent from day one, your expectations are managed. But with Max, for the first 15 months, we thought ‘he’s going to be Prime Minister or ‘he’s going to be chief executive of a major firm’ or ‘he’s going to be the best charity guy in the world’, the options were myriad.
Because I'd already read about Lovaas, we decided that was a way forward. There were some books that showed there was some promise, and we managed to find a community in north London that had children like that. We then got involved in a study called Early Autism Partnership and Max did 40-hours’ worth of therapy a week, because the thought-process was that if you intervene really early, you're going to reverse the traits of autism. I spent a lot of money because we were-n't funded for pursuing that. We have no idea what Max would be like without it, but I'll never know whether that was money well spent, or money we burned. You make these decisions and try and do the best for your child at the time with the information you have.
Max was still about three-and-a-half at this time. He was already at school and we managed to find a lady who would go in and support Max at his kindergarten. I do remember my wife trying to get Max to go to kindergarten and sometimes he would have real problems. There was one point he almost passed out he hyperventilated so much. My wife had to deal with all of that while I was at work. We've got an amazing marriage after 27-and-a-half years, but retrospectively, maybe I should have been a bit more caring and understanding. Maybe I was, but my initial impression with 20 years hindsight is that maybe I could have been a better husband at the time.
I was in a really high-pressure job and I wasn’t much fun to work with at that time. But we got on with it, and because we had each other, it worked very well - but because we were doing this early autism intervention, we were very secretive. Nobody at work knew that we had a child with special needs. We didn't test Max, tell anybody and we wouldn't get a state-ment for him because we didn't want it to be on his record because this professor who saw us said, ‘he'll be fine, we'll get him talking, he'll be normal, no one will know’. And we believed that.
Max is nonverbal. Autism is a spectrum disorder - you've got geniuses who go to Cambridge who are on the spectrum, and at the other end you’ve got where Max is, in terms of his ability, cognitive sense and understanding. In terms of behaviour, he was a wonderfully behaved child. All the carers wanted to pick Max because he was easy and he'd always have friends at school. We know other people who have autistic children with much more cognitive sense and a better understanding of language and communication but who are very aggressive. We never had that with Max, so we were very lucky. Maybe if Max had had different needs, we would have had a different marriage and a different experience.
We had a very stable marriage. I was doing well in the city at the time, so the financial burden of therapy wasn’t a disaster. And, as I said, we were incredibly secretive because we thought Max was going to be cured. Slowly but surely, we realised that assumption was probably overly optimistic. We realised we were in it for the long haul. We did have some moments when we would despair. You’d look at Max and ask him a question and he wouldn't answer, and you’d wonder ‘What’s going on in that mind?’ and the typical ‘why us?’ moments. There were times we’d go and watch Max in the school show and the other kids were on the stage doing their thing and Max would be on the stage with his support worker freaking out. I’d be sinking into the chair thinking ‘this isn't what my life was meant to be like’. At the time I'm sure it was bad but looking back – and I say this with a smile on my face - it was quite funny. I'm not a believer in any higher authority, but if there is a God, he definitely thought, ‘Who can we give a really challenging child to?’, looked around and saw my name, and literally laughed his head off. Because I was the last person who had the patience or the ability to deal with a special needs child. I try my best, but like everybody, we have our faults. Certainly, there have been times when I wasn't the best father; times when I could have done more, when, if he was comfortable sitting there watching TV for four hours, I’d let him be rather than taking him out and doing things. But you've also got to get on with your life and try and survive some of the hard bits.
At Max’s Bar Mitzvah, I stood up and said, ‘Max has taught me more than anybody else in my life’. And that's true. He's taught me things that have taken me to places I've never been before. And so, I think I'm privileged. Max can sing occasion-ally, so we taught him a little blessing that’s a 15-second song. I'm not religious, but I learnt the piece he would have sung in a synagogue, and Max sang his 15-second song at the beginning and end of it. So, we had a party in the garden – there were bouncy castles, a bucking bronco and a candy floss machine – and that was his Bar Mitzvah. I certainly never ex-pected to learn to sing Hebrew at age 40, but I've always wanted to be Max’s voice and so I was on that day.
When it comes to communicating with Max, we'll say something like, ‘Ok Max, we need three knives, three forks, three spoons, lay the table, go and get the serviettes and the cups.’ He'll lay the table and we’ll say, ‘What have you forgotten?’ and he'll look and realise it’s the salt and pepper; so, his understanding is there. He's got some words, but mostly it's single words. Sometimes if Max has been naughty, I give him a Paddington Bear-type stare, and he knows what that means. Max wears his heart on his sleeve. When he's in a bad mood, he’s in a bad mood. He can be uncooperative, but most of the time he's very cooperative and smiley. He's much better out the house than in it, because inside there’s always something that annoys him: the fact that the door is open, or the top on the Fairy Liquid isn't down, or there's a cloth that’s out that shouldn't be out. When we're out and about it's a world of wonder, and he's fine. So that's how his autism manifests, but there'll be so many other people that have very different experiences. We're lucky that, most of the time, we know when Max is in a bad mood. Sometimes he can be happy and then something will trigger him and you don't know what it is. The hardest part is the fact you can't ask him what’s wrong. We know him well enough to know what's getting on his nerves most of the time, but sometimes we're in the dark.
I said earlier that we never look too far in the future, but there was always a looming cliff edge from our perspective, which was the end of Max's education. We were very lucky Max stayed at school until lockdown. Because of the Post-19 provi-sion, he was able to stay there for three or four years. We kicked the can down the road because we didn't know what was around, and we wondered whether our experience of summer holidays replicated what would happen after Max finished school. During the holidays I would be at work but my wife was with Max. It had a much bigger impact on her than me. We knew that if we wanted Max to have full-time support and some independent living, that was going to have to be away from the family home. We looked at supported living and ummed and ahhed over it for a couple of years. I think if we could have had the perfect time, we might have had Max moved into supported living for the last term at school, so that he had that straight transitioning. But then Covid came along.
During the pandemic Max struggled. We never really struggled with Max before, and for the first part of it he was fine. We baked bread, did arts and crafts, went on long walks, and it was lovely, but he got bored of us, and I don't blame him. We managed to get involved with a charity that I knew the chief executive of, and they talked us through supported living for Max, and then we spoke to the local authority. Eventually, after much persistence, I managed to get them to see eye-to-eye, and we found a flat about 800 yards from us where Max could live by himself and have carers 24 hours a day. It may not be the case for everyone, but we've been incredibly lucky and Max loves it. He comes on a Tuesday and has dinner with us and every Friday night he stays over. We get some real quality time with him, and instead of him being bored of us, he's really excited to see us, and we’re not at our wit's end. If he comes over on a Tuesday and he's being a nightmare, in two hours he's going home. It's like being quasi grandparents - you get all the good bits and you get to give him back. That might sound really cold-hearted, but it's great. The relationship’s better than it's ever been with Max. He's so happy and settled, and the carers are braver than we are. On Saturday we got a WhatsApp message from his carers saying, ‘we've got tickets for Max for a pop concert at the Palladium’. I’d never have taken him in a million years, but we got video footage of Max sitting there with a smile on his face. He absolutely loved it! So, he's doing new things, having new experiences, and loving life. All that pressure has been relieved. I feel like maybe I should feel guilty for saying it, but it seems to work so well.
I genuinely believe I'm privileged to have had Max. I wouldn't have done at the time – it was my nightmare – but retrospec-tively, a quarter of a century gives you a nice ability to look back. I consider myself lucky and tell myself that every single day.
What's the best thing that someone's ever said to you that's helped you in a moment of despair or confusion?
I got in contact with an old teacher via Twitter; this guy was really inspirational. He said, ‘It's like getting on an aeroplane thinking you're going to land in the Caribbean, and you end up in Denmark. It's not where you wanted to be, it's not what you expected, but you made the most of it and you had a fantastic time anyway’, and I think that is how I would sum it up. And now, obviously, I'd go on that same journey again, but at the time, I'd have said ‘redivert it to Barbados, we’ll have a much better time’. But ironically, the travails of having a “normal” son are equally challenging. Max will never crash your car, or lose his mobile phone. It's just a very different journey.
Looking back, what would you say to your mid-30s self?
First off, life isn't over. Don't worry. In 20 years’ time, you're going to be happier than you’ve ever been. And you're going to be more fulfilled than you ever thought you could be. You will feel genuinely privileged to be the father of a child with such complex needs. The journey ahead is going to take you to places and introduce you to people that you'd never have met in a million years. You're going to do things and see things that you never would have witnessed, and you're going to enjoy it. And you know what? Life is actually ok. Max is happy and you're still married. No matter what trials and tribula-tions were thrown at you, you smashed it and got through the other side, and you're in a really good place. You're going to make new friends and meet people that will humble you. And they'll humble you so much that you won't be able to sit on the side-lines and not get involved. Their values will be different to what yours are and your values will change. And they'll only change for the better. It's an opportunity to broaden and grow.
What advice would you give to dads in a similar situation?
The thing about autism is that behaviours come and go, and the things you really worry about will be hassles for six months and then disappear, and then something else rears its head. So, my advice is don't look too far in the future. These things unfold as they unfold. Don't worry about five years into the future. Five years will come. Worry about what you're dealing with today, and then hopefully tomorrow will be slightly better. And if it's not, you'll deal with that then.
Find a support network if you can, whether that’s your spouse, family or friends, and don't try and shoulder it on your own. Reach out to the local authority and demand that they help. My view with the local authority is that it's a minefield that’s almost impossible to navigate without experience. Find someone who's done it before and never take a no for an answer. If you think you're entitled to it, fight. We fought with the local authorities and tried to do it the nice way. I've been a gov-ernor of two schools for over a decade. I've sat in meetings trying to help with things like education, health and care (EHC) plans. We try to be advocates and we try to be helpful. We fight our corner because my son doesn't have a voice, so I am his voice.
I would tell anybody who's got a fresh diagnosis, the road ahead isn't as bleak as you think. You'll have some incredibly funny times. There are going to be opportunities and things that happen, things that are going to make you laugh and make you a better person, you'll be stronger and more rounded. And life is good. I promise you, life is good. Just trust me on this one. Some of the funniest people I've ever met are the ones that have experienced the bleakest situations. And there is that dark comedy that you need to find, because you need to find a way to laugh. You need a release valve.
