I can't stop thinking about a moment on Survivor USA
Bear with me. It will make more sense as you read on...
Hi, I’m Becky, an artist and writer based in Derbyshire. I write about my life in what I hope is an honest and open way. I write about an array of topics, such as sobriety and neurodivergence, and about simply trying to find my way in this world. Please subscribe to support my work and to read more of my posts.
Last week, Charli Clement published a brilliant article about co-regualtion and brought to my attention this lovely moment from Survivor USA, where a contestant named Joe helps another contestant, Eva, who is autistic, whilst she was having a meltdown or, as she refers to it, an episode.
Watching it made me cry because it was a beautiful example of the another human being showing kindness and compassion to another human being. Eva opens up to the whole group about being autistic and everyone shows her kindness and compassion.
It made me really happy to see.
But, it also made me sad.
Firstly, because it is not the experience that many autistic people get, even from their loved ones. Instagram and TikTok are full of videos of children having meltdowns that their parents have filmed with the emphasis being on “Look at what I have to deal with!”
And I’m not saying that raising an autistic child can’t have its challenges but you should try being an autistic child in this world. It’s hard enough without your parents videoing an extremely vulnerable moment just so people on the internet can see how hard you’ve made their life.
It made me sad because the only time I have ever allowed myself anything close to a meltdown was when I was drinking alcohol still because it could be covered by “Oh, Becky was just drunk! That’s why they took themselves off to a separate room, cried for 2 hours and couldn’t stop.”
I know I experience shutdowns more often. I can feel it when even saying a simple “Yes” or “No” feels like swimming through treacle but I don’t know if that’s how I naturally am or whether that is just so people don’t judge me as much, think I’m weird or so I remain more convenient for other people.
This is what late-realised neurodivergent people have to face up to, this constant questioning of is this really me and how I deal with things or is this a mask?
It made me sad because I couldn’t help think about what if Eva’s story had been different, more like mine?
For clarity, if you haven’t watched the above clip - Eva was diagnosed when she was young and her parents were told she’d never live independently or hold down a job. The best she could hope for was to marry another autistic person. But, she was here, on Survivor USA, proving the doctors wrong.
Would she have got the same level of compassion and kindness if she’d only just been diagnosed? (She’s 24) Or was still awaiting an official diagnosis but knew with every fibre of her being that she was autistic?
Would she have got the same response from Joe and everyone if she were older and not at an age where many of them could see her as a daughter type figure?
Because I would naturally react in the exact same way Eva did. Not being able to do something, being bad at something, whilst being watched by other people *shudder* and filmed by cameras *double shudder* would have me stressed, anxious and overwhelmed, just like Eva. (If you read my letter last week - All or Nothing - you will be well aware that this is true. )
But I’m 37, not 24.
Would I get the same understanding, kindness and compassion?
It made me sad because this shouldn’t be such a groundbreaking, wonderful moment. This should just be how we treat other people, whether they are autistic or not. With kindness, compassion and respect.
Believe me, I am well aware that this doesn’t happen but this clip being something so revolutionary that it brought me to tears just seems so fucked.
When I first saw Charli’s article, I expected the worse. And, if you look at the world I don’t think that’s very surprising.
The US government’s secretary of health is wanting to stop children from having vaccines to stop the “rise in autism”.
This is so damaging in many way. Firstly because the idea that vaccines and autism are linked comes from a fraudulent paper1 by Andrew Wakefield that has since been completely redacted.
Secondly, “the rise in autism” is not an actual rise but just that more people are being diagnosed nowadays because we have better understanding of autism, misconceptions are being stripped away and girls, women, non-binary, trans people, black people, POC and working class people are gaining better access to diagnostic tools. Pretty much, any one who isn’t a little, middle-class, white cis-gender boy, who all the autism research was done on for a very long time, are being recognised. People who fell through the cracks for decades are now getting the right diagnosis.
Lastly, it is telling autistic people around the world, that some people would rather risk their children dying than being autistic. I would rather my child die than be like you. And that’s devastating on multiple levels.
The UK is no better with the current Tory leader sending out a pamphlet2 last year all about how conditions like autism have gone from something “people should work on themselves as individuals” to “something that society, schools, and employers have to adapt around”. People getting help and accommodations when they need them? I mean, the absolute outrage! /s3
Reddit is filled with people mocking and abusing autistic people and claiming it’s because they are all people who are faking being autistic. Why do they think they’re faking, you ask? Oh, really scientific reasons like they have colourful hair and/or they’re girls. They are just doing the world a service by calling out these wily fakers! /s4
Every day someone out there says something a long the lines of “Everyone’s autistic/ADHD nowadays”, with an eye roll and a tone that implies they might enjoy participating in calling out the “fakers” on Reddit.
It’s like they all believe that anyone who was diagnosed or self-realised after 20 just watched a 30 second TikTok, said “I’m autistic” and gained access to vast amount of accommodations, therapy and financial support.
I will tell you now even with an “official” diagnosis that doesn’t happen. It’s more “Your autistic! Now, off you pop!” And that’s if they don’t tell you aren’t autistic because you made eye contact with them once or you have some friends.
Also, how fucked is it that someone says “Hey, so it turns out I’m autistic!”5 and instead of people saying “Fuck, it so bad you’ve spent all these years not knowing this about yourself”, they go “Everyone has autism nowadays. It’s so trendy.” like you’ve told them you are considering cutting in a fringe because [Insert trendy person here] has one.
So, yes, that clip of a lovely moment on Survivor USA really got the cogs turning and the feels feeling.
I just want that to be how we are all treated when we need someone to be there for us.
I want it to be the norm.
Hopefully, as it has been watched millions of times, it will mark some changes. Or at least start some conversations. And maybe a few more Substack posts!
Thank you so much for reading.
As always, if you enjoyed this letter or anything resonated, please let me know by replying to this email or, if you are on Substack, by giving it a like or leaving a comment. If you really enjoyed it, please share it or restack it so someone else might find it. Thank you.
Until next time, take care of yourself and have a lovely week.
Lots of love,
Becky
🖤✨🌈
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Source: https://www.bmj.com/content/342/bmj.c7452
Source: https://www.theguardian.com/politics/2024/oct/14/kemi-badenoch-conservative-leadership-autism-campaign-pamphlet
This /s means I am being sarcastic here.
See above.
I realise no one would say this is such as nonchalant kind of way but go with me on this one.