We talk to Dan about how his diagnosis inspires his work as a filmmaker and how he and his son navigate the world together as autistic people.
 

When did you first know or start to think you’re autistic?

I honestly didn’t think of the word autistic until we started to think about my son potentially being autistic when he was about two. Then, it became more of a conversation. I saw so many parallels between his and my own childhood. 

Seth was diagnosed at the age of three and a half, and it was his speech and language therapist who gently asked me: “Have you ever thought about seeking an assessment?” Obviously, if a professional says something like that, you listen. 
 

What was the diagnosis process like for you? What did it mean when you got your diagnosis?

I approached my GP, and they warned me that the process could be lengthy. The initial referral was about 18 months, but COVID extended it into two and a half years. During that wait, I became more convinced I was autistic. 

The assessment itself was quite gruelling. In the end, I spent a long time, about two and a half hours, sitting there talking to someone.  

Again, because of COVID, there was a backlog of processing assessments. So, it was over two months between the assessment and the diagnosis letter, which was the hardest part. You’re in a bit of a limbo, and that’s quite tricky. 

In terms of what it might mean, I found it to be a bit of a roller coaster. On the one hand, there was the ‘it would be good to know.’ On the other, it was like, ‘Well, what does that mean if I am diagnosed? Does that change anything about me?’  

Of course, you wonder, ‘Am I going to talk about it afterwards? Is that going to be something that’s private, or am I going to share that information? Is it going to change people’s perception of me if I tell them? Do I stop being Dan, and I become autistic Dan?’ 

When I received the diagnosis, there was a lot of relief, but I did go through quite a few months of it playing on my mind. And, strangely enough, feeling doubt, thinking, ‘Did they get it wrong? Am I really autistic?’ It’s taken me almost a year just to be at peace with it. 

The other thing I grappled with is that I felt guilty because my son is autistic. It was difficult for me not to worry that I was partly responsible for my son being autistic. The clinician who assessed me said that’s quite a common thing, but I should not think about it that way.  

What was good about my diagnosis was that I could say to Seth: “It means you’re like Daddy.” 

There wasn’t a conversation where it was like, ‘you are autistic. It’s just you. You’re going to have to deal with this.’ It was like, ‘we’re in this together.’ 

That definitely helped him, and he went to school and told his one-to-one support teacher that he was autistic and then announced to everyone: “But it’s okay because my daddy is as well.” 

So he outed me at school, ha ha, which is fine.
 

How did getting a diagnosis change your approach to your work as a filmmaker?

The strange thing is I’ve been writing a feature film script for seven or eight years before this. It was about a little boy who was misunderstood, and a lot of it was autobiographical. People seemed to like it, but they always asked: “Well, what’s actually going on with him?” And I’d always evade the answer. 

When I was diagnosed, I sat and wrote it all over again, but I wrote him as an autistic boy, and it all suddenly made sense. It was the missing piece, and it made me realise that, as an autistic filmmaker, I would like to explore more stories about life as an autistic person. 

I’ve also just finished filming a short film, which is about an autistic adult and their experience. I’ve cast all the parts with neurodivergent actors. It was really interesting. All this stuff just poured out of me. I don’t think I’ve ever been as fertile creatively. I guess it’s been stored up for a long time! 
 

Could you talk a bit about your short film about autism?

It’s about an autistic character who is processing grief after losing their partner.  

I called it  The Promise  because when his partner’s dying, in a moment of trying to comfort him, she says: “Don’t worry, I’ll see you again.” And he says: “When?” 

It’s like a promise. It explores the idea of being literal and how devastating it would be to break that promise by dying. The story is about how a therapist works with the character to try and provide some hope for them going forward.  

It came out of a lot of discussions I had with autism therapists, for example, who talked to me about how death can be such an abstract concept for autistic adults and the nature of being on a repetitive cycle of grief. The character is trapped in that moment and has their world turned upside down. 

It sounds grim, but it’s about providing hope – that’s what the therapist does. She tries to get him to focus on the wonderful things his partner brought to his life and to think about those things.

Since you and your son have been diagnosed, what things have you learned about autism that you didn’t know before? 

We’re very lucky to have an amazing speech and language therapist for my son. She’s an autism specialist, and she’s been life-changing for him.  

From an early age, Seth was unable to speak, so he became angry and frustrated and lashed out. He bit and scratched – a lot of things that you would expect from someone who is intelligent but is struggling to communicate. She was able to reach into that person and bring him out. Then, gradually, she introduced him to small social groups, building it out and teaching him the things like basic communication that maybe neurotypical people take for granted.

It’s shaped the way we as a family work.  

Seth needs his quiet time. We don’t worry about him spending time alone in his bedroom if he needs to. If that’s what he needs to do to regulate, that’s all good. 

We offer him a lot more choice, as opposed to telling him what he needs to do. That makes it easier. It helps him be in more control, and we obviously try to anticipate things for him. So if something’s coming up, we have a wall calendar and make sure that he knows, but also for me.  

My wife’s been fantastic. I think she must have found it quite difficult when we met because I find social situations very difficult – that’s my biggest challenge, I would say. If we were invited somewhere like a wedding reception, I would become more and more anxious in the days leading up to it. I would either go there, just feel absolutely awful and have to leave – effectively ruining our time there – or I would have to drink alcohol to try and get through it.  

Now, if we have an invite somewhere, she’ll say: “This has come through, you don’t have to go to it. I’m happy to go alone, but equally, if you feel like you want to, you can.”  

We’re all still obviously learning, but we understand a lot more about the best way for us to work.  

Hopefully, it’ll be helpful for my son as well, as he transitions to secondary school and then out into the world. It seems really scary, but I consider myself very lucky to have that support. 

I can’t imagine what it’s like for people who don’t have that support and have to go through this alone, particularly for things like applying for school support, given how difficult that process is. Having the right support for that sort of thing is vital.  

The first thing to do is to find out if any people are going through or have gone through the same thing you have in your community. 

It’s also really, really important to try and find out what tangible support is out there, such as Disability Living Allowance. I think that could be made a bit more widely known because it helps families and adults to reach out and get support like physical or speech and language therapy. 

We had to really research and talk to a lot of people to get through that whole period.
 

What was the impact of getting a late diagnosis for you?

I don’t know. You do wonder about what it would have been like if you’d had that diagnosis a long time ago. Would it have made any difference? That’s just something you’re never going to know. 

It does make you look back on the life that you’ve lived thus far. It provides context for a lot of the things that have happened.  

Funnily enough, as part of the assessment process, they asked me for a statement from a family member. So I asked my mum, and when she told me things, I thought, ‘How did no one ever know?’  

Things like if I was walking through a town with my mum, I’d have my hands clamped over my ears. Nowadays, if you saw a child doing that, you would go, ‘Oh, okay, that might point to something.’  But back then, it was like, ‘Dan didn’t like noise.’ It was as simple as that.  

In my adult life, particularly in my late teens and early 20s, I was drinking a lot and taking drugs as well. When I look back on that period, I realise that it just got me through that point in life when you’re expected to be part of and do certain things or behave in a certain way. And that just wasn’t me. I guess I used those as tools.  

Again, during the assessment, the clinician said that it is very common for people, unfortunately, to feel the need to use drugs and alcohol as coping mechanisms.  

Now, I also think about the effect on mental health. That’s something I’m very, very aware of for when Seth gets older because I’ve had therapy in my life – it’s been tough. I understand now that it wasn’t because I was depressive; it was because I’m autistic, and that does make certain things quite difficult.  

For me, the hope is that knowing earlier, Seth might not have to go through as much of that, which is a real positive. Obviously, he has to tread his own path, but we can at least know that he doesn’t need to feel pressured into certain things. Hopefully, he doesn’t have to put that pressure on himself to fit in. 

There are a lot of positives to being autistic, and that’s something I’m trying to share with Seth as much as possible. 

As a filmmaker, I’ve made four feature films in my life and had some success with them. I don’t think I could have done it if I wasn’t autistic because I was so hyper-focused on it, relentless and driven. Without that single-mindedness, I would never have pulled those things off. I’ve also found that my filmmaking has been hugely helpful in processing my diagnosis. 

 

What does autism acceptance mean to you?

I think it’s a really, really big deal.

Someone very brilliantly said to me: “You’re on a different operating system.”  I love the idea that, say, a lot of people use Windows, but I’m on a different operating system, which just does it differently. They can do a lot of the same jobs and some different jobs too.  

That’s part of acceptance for me is for society just seeing the autistic community or ADHD, dyslexia or whatever community it might be as just subsets of a single community. 

It’s not like having neurotypical as the main way of being, and then all these other things are disabilities. It’s more like everything is just a component of the community. Then, that changes the way everyone sees autism and recognises that more adaptations should be made. 

In essence, it’s not to view autism as an exception – that, to me, is acceptance. 

 

Given that it’s Father’s Day, what message would you like to share with other fathers of autistic children?

I would say the biggest thing you can do as a father of an autistic child is to allow that child to be completely themselves, to celebrate who they are and not worry about what they’re not, particularly when they’re growing up through the school system. 

A lot of that infrastructure – for example, going into a school hall to eat lunch in a busy, loud environment with no or very little choice – are all things that are stacked against an autistic person. 

I’m not knocking schools. It’s just recognising that, at the moment, the pathway for an autistic child can be quite tricky. 

There is a degree of conformity in schools, life and society in general, which says that everyone has to be and do the same things. But I think that model feels outdated now because there are so many different people with different facets and different neurological makeups that it doesn’t really fit everybody. 

The people who make the biggest impact in society are the ones who are very individualistic and do things their way. 

I think that wherever we can, we have to accentuate what’s wonderful about autism rather than dwell on what’s difficult. So it’s about celebrating the person and allowing them to be themselves. 

Even in the nine years since we’ve had Seth, attitudes towards autism have changed enormously. There are more shows on television about autism, both documentary and drama. I feel like the awareness is coming through more.  

If I am going to get on a soapbox just for one moment, if you think your child is autistic, don’t be scared of it. I think that happens a lot, but without that assessment and diagnosis, you won’t get the support. Then you’re potentially holding that child back. 

I think there is a tendency, and this is something that happened to us, that if you suspect that your child is autistic, you try and find other reasons why they might have those behaviours or excuses for them.  

But, actually, what we found with Seth is that once he was diagnosed, then we could get support, and that’s been transformative. If we hadn’t done that, he would be nowhere near where he is right now, so that early intervention is everything for me – it really, really is.