The first episode
When I first saw that the BBC was looking for Autistic people to participate in this series, I was slightly worried. I loved the idea of putting Autistic experiences into film but I was concerned that the director or the BBC would use our stories in a way that didn’t represent us. That we would be used as a freak show or some kind of equality and diversity prop (see what I think about that here).
Despite my initial worry, the first episode shows Autistic experiences, actually, namely that of Chris Packham himself, Murray (a non-speaking Autistic man) and Flo, an Autistic woman who has been long term masking with everyone in her life.
Chris, who has only recently been diagnosed and ‘out’ about his being Autistic, was a brilliant and gentle presenter for the show. Being able to watch a programme where Autistic experience was commented on with ‘we’, ‘us’ and ‘our’ was so amazingly refreshing. The show itself was raw in places, sad, funny, uplifting and powerful. This was mainly due to the amazing stories and vulnerability shown my Murray and Flo. Instead of talking about their words, I’d really like them to just speak for themselves. So, here are my fave quotes and ideas from the show:
Flo, a late diagnosed Autistic women who is an improv comedian:
- “Any conversation at any time is improvisation” – Flo, talking about being an Autistic improv comedian
- “I never speak my native language [autism]” – Flo
- “Abdominal migraine” was what the doctor described Flo’s chronic anxiety as!?
- Flo think she masks 95% of the time. Her Mum reckons she knows 93% of her. This is so sad and I think Mum is Autistic too.
- Unmasking means going against the years if behaviour you used to hide yourself.
- Flo’s husband checks in with her when she stims, he’ll ask “is that a good or bad rock?”
- I had so many words in my head trying to say them was like putting rocks through a filter. – talking about a shutdown.
- I know what its like when you get like this [to shutdown]… it’s like your heads on fire but on the outside everything looks fine – Chris on Flo’s ‘unmasked’ behaviours and stimming.
- “Masking is a survival strategy, to avoid bullying and to fit into the non-Autistic world…It’s exhausting to pretend to be normal all the time…I’m worried you’ll think ill need fixing…I’m ready to me myself I hope you won’t be disappointed” Flo to her mum through her video.
Murray, a non-speaking Autistic man who uses a speller and tablet to communicate:
- Murray desperately wants people to know what’s going on inside his mind:
- “Autistic people need to be heard in this world”
- Because what Murray says through his Ipad is few and far between it is all the more powerful – Murray’s Dad.
- “Horses are dear souls in an Autistic world”
- “Listening to and understanding conversations but not being able to respond in time must be some kind of torture” – Chris
- I love that Murray choose the person who was doing his voice with the voice he most felt sounded like him.
- He said he was happy to be able to sound like “a normal man.”
- I think the voice actor for Murray is also Autistic, as he said he wouldn’t look at the person doing the recording as he doesn’t like eye contact.
- “Every single word in this film comes with a cost that most of us can’t imagine, so it is extremely precious and poignant.” – Chris talking on Murray’s video.
- “Non-verbal people are a pleasure to be around as we feel the world more deeply.” – Murray
- “Each of us [non-speaking Autistic people] is a star in the atmosphere waiting to be discovered and named.” – Murray
I’m so excited about a series which thinks about Autistic people, who have different intersecting identities and needs. Autistic people are not just the subject of this series, they are also involved in all elements of the project.
There are two things which make me feel a little dubious about the series, although I in no way want to take away the power and magic which came from what Flo, Murray and Chris shared. They are the poor resources which were cited at the end which Emergent Divergence has covered well here and that fact that Chris seems to have stepped back from his ambassadorship of Spectrum 10K but has not done a public announcement of this yet, I’m hoping that comes soon.
I’d love to finish this with a really good quote from the women who runs the Horses that Help group Murray goes to:
“We [neurotypicals] need to start listening in a way that may take us outside of our comfort zones”Horses for Help
The second episode
The second episode followed the same style as the first, this time following Ethan, a game development student and Anton an avid football player, both of which were diagnosed Autistic when they were four.
This episode explored lived experiences of coping with change in routine and sensory overload. Chris speaks about Autistic suffering being a “hidden crisis” but it really shouldn’t be. Society should be watching out for people who may need help. It shouldn’t be for us to constantly have to reach out for support which is inappropriate or simply doesn’t exist. Here are my favourite quotes and ideas from the episode:
Anton, a 25 year old Middlesbrough fan and trance DJ:
- “I can’t leave a box unticked” – all the things must go as planned, down to the minute and second.
- He uses music to block things out.
- He needs to know the times of everything and the timing cannot go out of place. If it does he will have to stay home from work.
- I’m not sure how I feel about the word ‘obsessive’ unless that is the word Anton uses for himself.
- When Chris told Anton of his issues with visual change, he said “You don’t know how much it means to me to hear that this goes on in peoples lives as well” Community connectedness really is a big deal.
- Anton said there was a time when he was embarrassed to be Autistic.
- Anton’s Mum can remember people staring and being nasty when he had a meltdown in the supermarket. She remembers that so vividly 20 odd years later.
- She’s now sad that she didn’t understand what was happening with him.
- The football friend said he was surprised because his brother is also Autistic but is ‘quite wild.’
- If I missed my bus – or it didn’t turn up. I may just not go to work.
- Why hasn’t Chris told Anton where his film will be shown? That would stress me out so much!
- Anton s friend – he seems happier at football since he’s started this process.
- Antons film seems to make sense to his footie mates and they’re going to check in with him more.
- The film is better than him trying to explain as he struggles to get his words out sometimes.
- “I feel immensely proud that I’ve had the courage to [share my autistic experience].”
Ethan, a 19 year old Black game development student:
- The only time Ethan leaves home is to go to college. He makes music at home.
- Ethan hyper focuses on his work at college and finds it difficult to concentrate or exist within all the noise of other students.
- He finds college to chaotic – “this chaos cannot be controlled.”
- Ethan reminds me so much of a young man I have worked with. He speaks the same and it brings up nice memories.
- From Ethan’s rap: “Being autistic and dealing with that has never been sweet like candy.”
- It’s so interesting that Ethan writes a song as part of his routine every day. I used to do that with song, story and poetry writing when I was younger.
- Ethan’s Mum : “In his world he’s not lonely but when I look at his world I think he’s lonely”
- “Its okay not to have the brightest presence in the room”
- Ethans song was amazing, as well as the visuals for it.
- He’s really grateful his classmates came and I hope it changes things for him at college.
- “What you’re doing through music is amazing – keep it up” – Ethan’s classmate after watching his film.
- Even Ethan’s family are surprised by how much he is affected by sound. His mum feels bad for taking him places when he says he can’t/ doesn’t want to.
- Ethan feels more confident about himself and it is gorgeous!
It’s interesting this time round that the films are happening in real life, around Anton and Ethans experiences. Not just a stand in front of the camera and talk like the first episode – maybe that because Ethan and Anton both love music and use it to cope and express themselves.
The professional spoken to in this episode was a lovely surprise – the one and only Luke Beardon! He meets Chris in an indoor market to talk to him about sensory overwhelm. It was interesting to me that Chris finds the smell of fruit so bad. Like the smell of citrus is just too much for him, especially as it mingles with the other smells. They are then seen talking in the woodlands which brings Chris comfort as he seeks out the sounds of the trees in the wind or rain. Chris reflects that it is slightly ironic that those who are worried about noise decide to make music but Luke rightly points out that the noise is immaterial, it is the unexpected nature of it that is the issue. He suggests that some Autistic people’s best experiences are there sensory differences – I can appreciate this as an avid music and dance fan.
On an additional note it was lovely to see Luke on screen for another reason, he has vitiligo, like my husband and he was so pleased to see someone with vitiligo on TV.
Chris also spoke to about his need to have everything “just right” and that he is “constantly re-doing everything – just to make it righter” as an Autistic OCDer I resonate with this so much. Also with the idea that it’s not helpful to stop repetitive behaviours.
“The more we understand each other the better all our lives will become”Chris Packham