2 It’s good to talk: improving communication with family members

INTERVIEWER 1

Moving on now to-- if we can talk a little bit about autism, if that’s OK?

PAT NEVIN

Uh-huh.

INTERVIEWER 1

So you mentioned that your son is autistic, and our school is a school for autistic children. So it’d be interesting to chat to you as a parent, and get your thoughts and opinion. So regarding your son, when did you realise he may be autistic, or when did you first think about it? And I imagine in the 90s, autism wasn’t as well known as it is now.

PAT NEVIN

It was almost unknown. And certainly, getting a diagnosis, we’d start to notice that Simon was a wee bit different from the other kids in the school, when he was-- or in his nursery, when he was about two-- two-and-a-half. And it was probably around about two-and-a-half, certainly long before his third birthday that we realised that he would get a diagnosis of autism, which we didn’t understand.

And it was up to me and Annabelle, my wife, to learn more, to try and understand it. We didn’t have a lot of help. There certainly weren’t any schools. And it was-- I have to say, it was difficult for us. Because all we wanted to do was the best for Simon, and give him the best help. And give him-- and try and understand what would help him in every way.

Because autism is so interesting. There is a different way of looking at the world. It’s not the wrong way or a right way. There’s just a different way that people with autism often look at the world. And some of us who are not autistic-- although, I think we’re all a little bit autistic, and I certainly think I’m a little bit autistic. And we have to try and understand the way people with autism think. And if we understand the way people with autism think, I think it makes it easier for us all. And I’ve learned. And I wanted to try and teach Simon so many things. I have to tell you, I think he’s taught me more than I’ve taught him.

Because I’ve learned that there are other ways of looking at life. There are other ways to get great happiness out of life. There are difficult things that you have to find a way around. Like many autistic young men and women have meltdowns and difficult times when things are difficult.

We’ve taken many years to understand why, the reasons it happens, and what makes it easier afterwards, what helps us all. Then try to talk to each other, and find a way to tell each other why we’re upset and why that happened. So that’s just one little situation.

But we’ve tried to listen as much to Simon, and it’s hard with some people who have autism, who don’t have all the words all the time, and not be able to explain what they feel. So that makes it challenging for everyone, and particularly the person who’s autistic. Just always remember, it’s just different. It’s not better. It’s not worse. It’s just different.

INTERVIEWER 2

How did having the autistic child impact as you a family?

INTERVIEWER 1

Well done. So how did having an autistic child impact the family?

PAT NEVIN

Simon was our first son. And we just had one other child, Lucy. And maybe there were certain things that we thought we would have done. I think we live in a different place than we would have. Because we are like a little rural community, which I think helped Simon.

I certainly think in the early days, holidays were curtailed. We didn’t have the same holidays because it was hard for Simon to travel. And he’s learned how to travel now. And the good news is, I can tell you, Simon recently went on his own to Berlin, which is fabulous.

INTERVIEWER 1

Excellent.

PAT NEVIN

And we’re very proud of Simon. Simon gets buses and trains. And he drives now. And he’s been driving for quite a few years. In fact, Simon has a job. He drives children with special educational needs to school and back. So--

INTERVIEWER 1

Amazing.

PAT NEVIN

Simon has done incredibly well. And everybody-- well, people forget about autism and families who are dealing with-- the questions that come up is-- they are often and they are usually, everybody improves, everybody learns. Whether you’re autistic or not, we all learn. And we all get better at things. We all understand things a wee bit better.

And maybe for us-- we maybe we had a wee plan for our lives, and maybe that plan became a different plan. But hey, so what? [LAUGHS] That’s another plan to enjoy. And as I’m talking to you just now, we’re going to go on holiday quite soon to Kefalonia.

And we go there every year because Simon loves going to the same places, which is fortunate for me because I love going to that place, too. [LAUGHS] So Simon is now getting much better at going to new places. So travelling is a thing that Simon loves to do.

So maybe some of the things that we’d like to have done 15 years before, we were delayed a bit, and we couldn’t do them. But it’s amazing how Simon’s caught up with us. Because now, Simon will go to more concerts than me. Absolutely. He loves going to concerts.

And Simon has these special superpowers that I talked to you about, which is his phenomenal memory, and stuff like that. So it changed our lives. And let’s be honest, it’s hard for everyone sometimes. Let’s not pretend it’s not. It’s hard, isn’t it?

And your mum, or your dad, or your siblings, they find it difficult sometimes. Everyone does. But you learn. And as long as you’re willing to learn and as long as you really love each other, you can get through it, usually. You can get through most things. But there are difficult times.

And when-- Simon had a difficult time in a train recently. Can I tell you this little story? Simon had-- for a good reason, our flight was cancelled. So we had to go from London. So we had to rush to get the train. So we got on the train. And Simon’s not mad keen on changing his routine, but he was coping with it OK. And we got on the train. And then the train had to stop because-- wait for this-- a boat had ran into the bridge in front of us.

[LAUGHS]

INTERVIEWER 1

Oh, my God.

PAT NEVIN

A very unusual thing. But we were stuck again. And Simon did get very upset in a very packed train. And it was hard for everyone. And of course, some people look and do understand why you’re having a meltdown.

Simon as he is now was able to-- when things calmed down, without us saying anything, he walked down the train and said to everyone, I’m sorry. I just got a bit upset there. And he talked to just everyone. He walked down, and had a chat with people.

Do you know, everyone was absolutely fabulous. They were lovely. They were understanding. Because people-- most people have a better understanding of autism and various other neurodiversities now. And so that was a hard day, but it was also a happy day.

INTERVIEWER 1

Yeah. And that’s fine. From doing this podcast as well we’ve-- when we set the podcast up, we wanted to obviously teach our students key skills. But also, make the public more aware of autism. And some of the feedback that we’ve got from our listeners is brilliant.

Seeing the progression of the students who’ve done the podcast-- we’ve had about eight or nine have done the podcast. And they’re saying that they’re learning more about autism because they’ve never come across a person who’s autistic or come across a family member who’s autistic.

So yeah, making the public more aware is key. Because at some point in your life, you’re going to come across an autistic person. Whether that’s in the street, or a family member, or a next door neighbour. So yeah, it’s vital.

PAT NEVIN

I hadn’t talked about it until – about a year or two. I hadn’t talked to about-- my wife and I hadn’t talked publicly about Simon’s autism. But it was because we had one way of looking at it as we thought it was Simon’s choice. Because I’m quite-- in the public eye-- and Simon will choose when people want to know.

And before that, what I had done is tried to promote knowledge and understanding of autism, I worked was Scottish Autistic Society and Autism Research Trust. And it’s now called ARC. It’s under a man called Simon Baron-Cohen, who many people will know in the world of autism. And what I tried to do is talk about it a little bit then.

But this recent book that came out just only two or three weeks ago, and I’ve written a bit about it. And I hope that when you write books-- because they’re quite long things sometimes. But I do hope that the most important thing to come out of the book is for people to read how we dealt with the situation and how Simon’s dealt with it, and where he is now, and the difficulties.

I hope this touches a few people. Not just people who have never met anyone or dealt with anyone who’s autistic, but also those who are just finding out that they may have a son, or a daughter, or a sibling, or a nephew, or a niece, or whatever who is autistic. I wanted people to know.

So what you say about given understanding, well, we are doing that now. As a family, it was time for us to do that now. And I suspect-- I’m getting on a wee bit now. But I suspect I’m going to spend a large part of the rest of my life doing exactly what you see.

INTERVIEWER 1

And this question may not be relevant to you. So if it’s not, that’s fine. We’ll move on. But it might be so. As a parent of an autistic child, there’s a lot more involvement from professionals, maybe occupational therapists, physiotherapists, speech and language, specialist school. As a parent, how did you find having the involvement from a lot more professionals in Simon’s life?

PAT NEVIN: Well, it was there. We wanted some-- [LAUGHS] --we didn’t have enough professionals involved. And that was the real difficulty at the start. Because we needed people to explain to us. Then we could maybe take over some of the tutoring, etc.

But I have to say, we went back to Scotland because there was-- Simon was capable of doing mainstream schooling with single help-- with personal help each day to some degree. And there was a special needs unit within the school that Simon was in as well.

That professional help and care was brilliant. It was a lifesaver because it found out Simon, the capabilities. You won’t always agree with everything every specialist say, I’ll be honest with you. But the vast majority of people that are in that profession are doing it for the right reasons, and trying to find the path. Because we’ve all got paths-- find a path.

And Simon found-- he didn’t find a path. He found a road, oddly enough. And the road was through a car. And that’s why he got a job. And that’s what it was-- it’s very fulfilling, not to-- to everyone. Not just to anyone who’s got it, but to anyone-- to have a reason to get up, to be able to do a job, to have a clear direction in your life-- and whatever that is. It doesn’t matter what it is-- if you can find what that is.

And it’s certainly, having those professionals in our life-- gave us little pointers, gave us help. And certainly, that was something that we didn’t have any problem passing over. Saying, Simon, can you do this? But we’ve also got other ideas, how we’ll manage things.

And so there were-- some were better than others. Some were fabulously brilliant. Some were less than good. But I think most people who work in the profession, to take care of anyone who has any differences, I think they’re mostly there for the right reasons.

INTERVIEWER 2

What defines what you give to other parents of autistic children?

PAT NEVIN

Well, as you know, it’s a very wide spectrum, and it’s-- so it’s very hard to give very specific advice. But if somebody would have given me advice, the piece of advice I would love to have been given was when Simon was two-and-a-half or three, and we just found out. If somebody would have said, don’t worry about all the things that might go wrong. Just start learning. Don’t throw away your whole life worrying about the things that might go wrong. And some of them won’t.

INTERVIEWER 1

Yeah.

PAT NEVIN

Try, if possible, to deal with each thing as it comes along. Yes, you need to prep and plan for certain things. I gave away a few years of my life, worrying about things that never happened. Or Simon breezed past them and got-- was able and capable. And yes, it’s human nature to worry. But what I did learn, and the biggest help I ever got was I learned, actually, happiness isn’t what society tells you. Happiness is just happiness.

So whoever you are, wherever you are, there are plenty of people that are multi-millionaires, who have supposedly got everything and aren’t happy. And I know many autistic boys and girls, men and women, who have found a place in their life-- though they might not have a lot of money, but they’ve got a lot of happiness. I’d rather be them. I would rather be that person. And I’m not saying that just for effect. I mean that.

I’d rather be happy. And I would certainly rather my son was that person and that happy. So if there’s any advice it is, try not worry your entire life away. Do the moment. Plan, yeah. But do the moment and love the moment.

INTERVIEWER 1

Brilliant.