A desperately human portrait of a family coping with their child’s autism.
Peter Bowker, renowned for his BBC2 television drama Marvellous, recently launched his latest project, The A Word. The letter ‘A’ in the title stands for many things, from adultery to altruism, but the most central ‘A’ word is autism. Examining the interlocking and tangled relationships of a family thrown into turmoil over their youngest member being diagnosed with autism, The A Word is intense, funny, and deeply human. The series had its United States premiere at the Museum of Arts and Design in New York earlier this week, where we had a chance to speak with Ilene Lainer, the co-founder and president of New York Collaborates for Autism, and Bowker himself.
How do you feel about being here for this and being involved?
Ilene Lainer: We are thrilled! New York Collaborates for Autism launches programs for people living with autism right now, and what we want everyone to know and take away is that you can make a difference by reaching out to someone with autism. It’s not just about having autism, it’s about being included in a community, and sometimes autism makes that harder so people can help by just reaching out. Invite someone over for the barbecue, or the dinner party, make them part of your community.
Can you talk a little about the kind of work that you do?
Lainer: We launch innovative programs for people living with autism today. We have started charter schools, after-school programs, transition from high school to employment programs… We can make a difference by developing services and supports that help people with autism and their family live more successful lives.
How did you get involved with the show?
Lainer: We got involved with the show because a supporter of New York Collaborates for Autism contacted us to tell us about it and asked if we would be interested in supporting it. We watched it, because we always look at what we support, and it was so consistent with our values that we wanted to see this get out there.
And do you have a particular story that informs why you do what you do?
Lainer: A really tough question… But really the true answer, part of why I do what I do is I have a nineteen year old son who’s on the autism spectrum and he’s no different from my twenty two year old son who’s typically developing. And I want them both to have the same thing, a joyful, happy, productive life. And we can make that happen by supporting the person with autism, my younger son, in a different way, but still to the same kind of success that I want for my older son.
Going back to the beginning, what made you want to make this in the first place?
Peter Bowker: Well I’d been a teacher, before I was a writer, I’d been a teacher for children with learning disabilities. And I’d kind of stored that experience away, but somebody brought me an Israeli series called “Yellow Peppers” about a family with a child with autism. And it was almost like that gave me permission to go back and use that experience and turn it into something fictional. So it’s the two, it’s something from my own and something someone else brought. And I just thought as a dramatist it’s a bit of a gift really, most of my dramas are about people who talk a lot, but can’t communicate, it’s a very Manchester thing you know, but this seemed to me a gift because by definition that’s what’s going on in this drama. Surround him with smart and articulate family, but they’re still not saying anything. That was the fun of it for me as a dramatist.
How much did you take that was autobiographical?
Bowker: In all my work there’s an element of autobiography, but it’s usually not an obvious one, it’s not like I based the child with autism on any particular child with autism. And it might be that I’ve seen something in one family, or the strain in one family, that I might then transfer into another. I mean writers are usually writing about themselves deep down. Most of it is pretty heavily fictionalized, but I hope that emotionally it’s real. It’s drawing on both the pain and the pleasure, but at this stage of the drama it’s very much about blame, the damage to your ego, what parenting might be, what parental aspiration is; is it really just a way to reinforce our own egos? How do we handle that disappointment? It’s quite interesting in that. For a dramatist, that’s quite a gift.
Those are a lot of heavy ideas. Is there anything you want families to take away in particular?
Bowker: Don’t do Christmas together would be one! Maybe under those ingrained patterns of ‘every time we get together we recreate our childhood’, maybe you might want to take a step back and talk to each other! When I talk about it and it’s very grim, I also hope it’s funny and I hope it’s inviting!
Was it difficult to balance? Wanting it to be so serious, but funny at the same time?
Bowker: Well I suppose in a way it needed to be truthful. And most of the parents that I know, there’s a humor there, whether it’s dark humor or whether it’s just something funny that happened. Because that’s what sees people through. And there’s a line I had to change because of the language in this… But you’ll see that in there!
After the screening of the series’ first episode, a Q&A, moderated by David Remnick, was held with Lainer and Bowker. Below is an excerpt.
Can you tell us about the young boy, the actor?
Peter Bowker: Well we did open audiences and I think initially the casting director and I saw between one hundred and fifty and two hundred children, boys and girls. We were never looking for – although I was open to the idea – the idea of a six year old on the autism spectrum playing a five year old on the autism spectrum seemed too big an ask to me. I’ve always been dedicated to casting people with disabilities playing people with disabilities and indeed later on in the series a fourteen year old boy on the spectrum plays a fourteen year old boy on the spectrum because he can handle it.
Just to be clear, this boy’s not on the spectrum?
Bowker: No he’s not! He has experience in his family of autism, but we were looking for a quality in a child that’s about being separate.
Ilene, you have a son with autism and you know this world just as well as anybody. How realistic is this depiction seem to you? What bells does it strike?
Ilene Lainer: The doctor’s office was absolutely visceral. That comparison to other children asking, ‘How can they possibly be different from mine? My child seems just like them.’ But also the moment when the mother realizes that the child is not being invited to any birthday party, when she feels that they will be ostracized and her child will be an outcast, and you can’t even use that word autism. I remember when our son was diagnosed it was eighteen years ago and we were given the diagnosis, as many parents are, of PDDNOS. For those who don’t know, Pervasive Developmental Disorder Not Otherwise Specified, meaning ‘we don’t really know’. And I insisted in the beginning that it wasn’t autism. And as time went on, of course, it was autism, and I was able to say the word. And as you described, hopefully the journey of this show will be one of first understanding and then acceptance and ultimately celebration because the person with autism is not just autism. That’s one aspect of them and there are incredible qualities that every person has and it’s about understanding who they are in their unique way. So some people with autism do have gifts, although many don’t, and other people with autism are developmentally disable and cognitively challenged. Different people with autism are different.
Where do they live? Where is this strange planet?
Bowker: It’s the Lake District. The Lake District is kind of northwest, there’s a kind of wilderness, the only bit of wilderness that isn’t Scotland really. I don’t normally write rural drama, I write urban drama. The only reason I set it in the lakes is because I wanted somewhere that looked like paradise to raise a child until the child is vulnerable, and then you’re far away from your sources.
Photo credits: Radio Times.