Film-maker Saskia Baron is best known for two ground-breaking documentaries. In 2003 she made The Autism Puzzle, which attempted to shed light on the ‘new phenomenon’ of autism at the height of the MMR vaccine panic. It was partly informed by her experience of growing up with her severely autistic brother Timothy. In 2001, Channel 4 had broadcast her two episodes of Science and the Swastika, about the Nazi genocide of people with disabilities. Here, in the first of a two-part series, she reflects on the making of The Autism Puzzle.
My brother was diagnosed with autism in 1961, the year that I was born. My parents were among the founders of the National Autistic Society (NAS) and I can’t remember a time when I wasn’t curious about what had made my brother and the other children I met through the NAS so different from me. I’d ask questions about causes and try and work out how Timothy and his peers saw things, why some of them could talk really clearly but didn’t seem to be having a conversation I could follow, while others like my brother, worked hard to get any words out at all.
I’d also struggle to explain Timothy to school friends who didn’t know anything about autism. I used to say when I was a child that he could do everything we could – see, hear, speak, think – but that we had in our brain some bit which sorted out all the stuff we took in, and with him it didn’t work in quite the same way and it got jumbled and that made life difficult for him. Sometimes that worked as an explanation, but as I got older, it didn’t seem enough.
Rain Man effect
I wanted to be a filmmaker from my teens. I started writing about movies at university and moved first into arts journalism and then to the BBC where I learnt to direct on the job. I watched any movies and documentaries that touched on autism and nearly always I was frustrated by what I saw on screen. There was always too much focus on it as something that affected children, never anything about adults unless they were savants with extraordinary skills. I’d met a savant with amazing musical skills but he was also blind and mute. He was nothing like Dustin Hoffman in Rain Man and I found it irritating that whenever I mentioned my autistic brother, everyone would ask ‘what’s his special trick?’ or be surprised he was an adult.
I wanted to make a film that showed the full range of autism – adults as well as children and autistic people who were very intellectually able and those like Timothy who would need constant support. When I pitched the idea to a commissioner at the BBC, it was 2001 and the UK was still in the grip of the panic over MMR and the mystery of rising rates of diagnosis. I knew that MMR had nothing to do with autism but it meant that its profile was raised and won me an hour’s airtime on the new channel, BBC4.
Range of voices
I’m not an observational filmmaker by nature. I admire documentaries where the director slides into the background and lets life take place in front of them. But I am more of an anxious control freak when it comes to directing: there’s so much to say and so little time, I can’t leave it to chance whether what I want just happens when the camera is on. I’ve always been more interested in constructing an argument, crafting an essay where you hear a range of voices and the pictures are chosen to tell the story. I was curious about how autistic spectrum disorder (ASD), once a rare and mysterious condition, now made tabloid headlines. What was this worrying thing called autism that seemed to affect ever more people and how had understanding of it changed over my brother’s lifetime? It was a puzzle I wanted to explore.
I took advantage of working inside the BBC itself (unusual for me as a freelancer) and called up everything the corporation had ever made on autism that could be found in their archive. I found black and white footage of the National Autistic Society’s first school, with children being taught by the gifted teacher Sybil Elgar. There were scenes with children who I still knew as adults. This wasn’t just about wallowing in nostalgia but also gave me a way to tackle the question that parents always want to know when their child gets a diagnosis: what will they be like when they grow up?
Insightful
David Braunsberg was a worried six year old with huge brown eyes in the 60s school film. He had grown up to be an artist and was very articulate but still obviously autistic. He lived with his mother who was also in the old footage. I filmed them together watching their 1960s selves on screen; they gave a wonderfully insightful interview on how autism affected David then and now. David had an excellent memory and could conjure up vividly how confusing the world had been to him as a child and how his autism today could be a troubling source of obsessive thinking but was an asset when it came to painting.
I found a gem – a Panorama about autism with a grim title: And It’s For Life. Made in the summer of 1974, it featured my then teenage brother Timothy in a bright yellow shirt, moving in to the National Autistic Society’s first community for adults. There was beautiful, clear-eyed Timothy, looking around the coach taking him to his home of the next 20 years. There were the first generation of young autistic adults, moving from school to Somerset Court, with pioneering Sybil Elgar.
Capacity problems
In 2002 my brother was no longer at the Court but in a different residential home. I wanted to film him while he was on holiday with my father. It should have been straightforward but when the BBC films an interview, it needs a signed consent form agreeing that the interviewee understands the nature of the programme, that other people will appear in it, they will be edited, and that the broadcaster retains all rights and can use the footage in different contexts. Timothy lacks the capacity to read and understand a consent form; someone would have to make the decision about whether being filmed was in his best interests and legally it rested with the local authority who fund his care. With a bit of persuading, the local authority did consent and I got to film Timothy and my dad rowing on a lake, feeding the swans and walking along companionably through a wood. In my dad’s living room, I showed Timothy the footage of him doing a jigsaw puzzle at Somerset Court and tried to work out whether he could identify himself. My dad described how much calmer and happier Tim was as an adult than when he was an angry, distressed child.
I also filmed with two families, each with two young sons on the spectrum, who were very different in how autism affected them. There was a lot of negotiations with their parents about what we would film as the boys were under the age of consenting for themselves. It can be difficult to manage people’s expectations of what taking part in a programme will mean to them; it’s not always easy to make promises. The filmmaker you meet is not always wholly able to control what is broadcast and can’t offer very much after filming has finished. At best, directors are allowed to show participants a cut before the final editing stage and give them time to point out factual errors, but the broadcaster will quite rightly never allow a producer to give away any editorial control.
Pressures
What I do is not shoot scenes in the first place that I think might harm the people in the documentary. With The Autism Puzzle, one of the autistic children liked to walk around naked and had some sensory habits to do with toileting. I told my camera operator not to film any of it and to switch off during his really distressing meltdowns. I didn’t want to make their lives any harder by exposing them at their worst. One criticism of the documentary that I readily accept is that I made life with autism look a little too easy – I admit I didn’t tell the whole story.
Even when I’ve avoided filming something, in the edit I might be pressured to simplify, dramatise and personalise the commentary more than I would like by my commissioner. They are after all paying for the production and genuinely believe it will make the film better. For example, I never meant to include so much of my brother and father in my documentary but my commissioner thought they came over really well and encouraged me to put them in more. That led to me putting in personal narration and caused some family tension after the broadcast; if I had that problem with a film that I directed and produced, imagine what it could be like if you were just a character in a film?
I’m always torn between wanting to encourage a wide range of autistic people to take part in TV to show the diversity of the disorder and increase awareness, understanding and tolerance. It’s vital that their voices are heard, that more autistic lives are seen onscreen. But I’m aware that autistic people can be particularly vulnerable and may not realise that in this era of YouTube and social media, the film they agree to appear in for one TV broadcast may well end up living forever on the internet.
The Autism Puzzle can be seen here: https://vimeo.com/channels/saskiabaron
