Last night I watched Our Family and Autism, a BBC One documentary in which Paddy and Christine McGuinness talked about their experience of having three autistic children. It was widely trailed as a heart-warming documentary. For some of us it was more like heart-sinking.
So why did some people like it so much? Because it made them cry. Because it raises awareness.
The trailer was all about the “struggle” of the parents on finding out their children are autistic. That didn’t bode well. Maybe it was “brave” and “honest”, as some people are saying. Maybe it was “moving” and “emotional”. That’s not the same as being helpful. (I’ve never understood why making people cry is supposed to be a marker of good creativity.)
Some have questioned the McGuinnesses’ motives for making the documentary. I’m not going to comment on that because I’m not a mind reader. But I am going to comment on the message.
The takeaway message was supposed to be: autism is not something to be scared of (“the idea of autism was more scary than the reality”). But the overall impression was: autism is something to be scared of.
And it was all about “living with autism”. Not “being autistic”. There is a difference. Like Christine McGuinness (and many others) I am a late diagnosed autistic woman. In the three years since my official diagnosis I’ve learnt that there is a difference between the “autism community” and the “autistic community”. And that they don’t trust each other.
This film shows why. It was quite telling that the instant social media response was: autism parents loved it, autistic adults hated it. You could tell who didn’t get the point, because they used words like “inspirational”.
It’s BBC One, and it’s fronted by celebrities. (I don’t actually know who Paddy McGuinness is or what he is famous for, and whether his wife Christine is also famous or not. Maybe being outside the mainstream culture is part of my autism, or maybe it’s just me.) So, obviously, it’s the “journey” format. Starting with the shock-horror of their three children’s autism diagnosis and ending with Christine’s own diagnosis (less of a shock, because widely publicised before the show went out, and because she has a book out).
What an autistic person thought about the documentary
Because I don’t know who Paddy and Christine are, I wasn’t automatically on their side. And I was inclined to be sceptical. I’m usually inclined to be sceptical, especially when it comes to autism.
Five minutes in, there were already autistic parents telling Twitter they were crying. I had to stop myself asking them “Why?” Recognition, I suppose: shared experience. But all I saw was someone saying there was a problem with their children. Which I read as: their children are a problem. Which means: I am a problem.
The autistic community gets very cross when some parents show the world how much of a problem their children are, as a way of “raising awareness”. (Yes, there are videos out there of children having meltdowns. Human rights, much?) To be fair on the McGuinnesses, they don’t do this. You don’t even see their children’s faces.
The downside of this is that you never see their children as people. You just hear about them as a problem. I’d have liked to have heard from the children themselves – except, weirdly, they haven’t been told about their diagnosis (and the oldest are 8). As someone pointed out on Twitter, “everyone in the world knows that their children are Autistic, except their Autistic children.”
The part of the film that made me most uncomfortable was the conversation between Paddy and another celebrity, whose autistic child is non-verbal. You could read it as two men sharing experiences, or you could read it as two people “othering” their own family.
Why is it a problem that your child doesn’t eat certain food, finds loud noises painful or has meltdowns when the outside world becomes frightening and frustrating? It doesn’t make them less of a person. Those things might be a problem for your child, but it doesn’t follow that your child is a problem for you.
I understand that parents worry. All parents worry, even the ones with neurotypical children. (And I know some autism parents, and I know that it is worrying having a child who is vulnerable.) The programme went through the McGuinnesses’ worries.
How will they manage at school? They went to a school that respects autistic children as individuals, and heard from two of the children, and patronised them. (One in particular proved that autistic people have a sense of humour.) Will they be able to live independently? We went to a place that supports young autistic adults in living independently, and watched them being patronised.
We didn’t hear from any autistic adults who don’t have “support” and are living normal lives with marriages and jobs like anyone else. There are thousands of us living invisibly among you. Some of us might have struggled to reach the point of successful relationships and successful careers, but then again that’s probably true (perhaps in different ways) of most of the population who didn’t go to Eton.
I’d have liked to have heard from some autistic advocates instead of autistic “experts”. I’d particularly have liked not to have seen the ubiquitous Simon Baron Cohen, a man not much trusted among the autisticcommunity.
Note to TV producers: other academics in the field exist, outside of Cambridge. Luke Beardon from Sheffield University actually listens to autistic people and involves them in his work.
I’d have liked to have heard people say there was “something different” about their children, not “something wrong”.
I’d have liked the film not to start off by telling viewers that autism is a “developmental disorder”. I’d like them to have mentioned the neurodiversity viewpoint: that autism is a difference in how your brain processes the outside world. Without the value judgement.
I’d liked to have heard from an autistic family who are happy being an autistic family. The portrait in Dara McAnulty’s Diary of a Young Naturalist is genuinely heart-warming: they are close-knit, supportive, sharing the joys of their special interests, embracing each other’s eccentricities. I’d love to see a programme called “Our family and autism” about them. Their life is not without struggle but that’s not because of the autism, it’s because of school bullies.
The autism is not the problem: the outside world is the problem. In a “blink and you miss it” line near the end of the film you do get a brief acknowledgement of the social model of disability: that people are disabled by barriers in society, not by their differences. As Luke Beardon says: “one of the best ways of supporting an autistic individual is to change behaviour – not of the autistic person but the behaviour of those around them.”
Some facts about autism
So what do you learn from the documentary? There were a few useful facts.
- That vaccines don’t cause autism.
- That masking is a thing, especially for girls and women.
- That many women don’t get diagnosed until they are adults.
There’s also some misinformation. So here are some more facts.
Fact: The “spectrum” is not linear. (So why did they keep using phrases like "lower down on the scale"?) That’s really basic stuff: autism 101.
Fact: Autistic people have feelings. No-one in the film actually dares to say autistic people don’t have empathy, but there was a lot of stuff about whether autistic children can feel or show love. Yes, they can.
Fact: Autistic people have empathy, it just presents differently. And then there’s the double empathy problem.
Fact: Some autistic people (and some neurotypicals) have alexithymia which means it's hard to recognise emotions. It doesn't mean you don't FEEL emotions. But you might show them differently.
Fact: Autism isn’t a learning difficulty. Some autistic people have learning difficulties, and some have PhDs.
Fact: Autistic traits have many positives.
Fact: Awareness is not the same as acceptance.
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