I have many friends who are autistic.
And I often hear people who are not autistic trying to show acceptance, and relate to an autistic person by saying things like "Yes, I'm a bit autistic too, because I don't like change/don't like loud noises/stim/[insert appropriate phrase here] too" or use the phrase "everyone is a bit autistic" to try and be inclusive.
Now here's the thing.
Loud noises make my spine cringe. If words are too loud I really struggle to understand what they mean. It's like I'm having to use so much energy up to cope with the loudness I can't focus on the meaning.
I have poor proprioception (I don't know where my body is in space when I'm relaxed). Pressure helps me know. So does movement. So when tired and trying to concentrate I may rock, or sit on my hands or on my feet, or wrap things tightly round my hands or fidget, or stretch repeatedly, or one of lots of other things that gives my brain enough input to stop having to work out where my limbs are so it can focus its fatigue-limited resources on more interesting things. Essentially: I stim.
Surely that makes me a bit autistic?
Actually, for me, they're part of my hypermobility syndrome.
I find it totally understandable that some autistic people stim, and it's something I can relate to, but I'm not autistic.
I wear ear plugs when I go to concerts, but I'm not autistic.
I am not on the autistic spectrum.
Because (as I understand it) the autistic spectrum isn't a spectrum from 'a little bit autistic' to 'very autistic'.
Everyone on the autistic spectrum is autistic. They have a different way of processing things to me (who is not autistic). The 'spectrum' part relates to individual variations within the autistic neurology (although there's probably a better way to word it than that). They each display different traits from multiple parts of the spectrum as part of their autism. For example an autistic person might avoid eye contact, or might make so much eye contact that the non-autistic feels uncomfortable. They might seek a certain sensory input or they might actively try to avoid it - thus making a broad spectrum of traits within the diagnosis of autism. Some traits might be mild or severe (like obsessive tendencies, or level of verbal communication) but that doesn't make someone more autistic or less autistic. The autistic way of processing is there. It is a part of who they are.
Does my insight into living with poor proprioception mean I know what it's like to be autistic?
No.
Because we don't experience life according to separate symptoms - we experience it as a whole being. For example, I experience poor proprioception alongside my ability to pick up non-verbal signals and hints easily. That means I don't know exactly what it is like to have poor proprioception and a limited ability to process non-verbal signals and hints.
Of course I use the insight from my poor proprioception to help me understand similar traits in autism, but I also need to step back and recognise that I'm not autistic so there will be differences.
"Everyone is a bit autistic" doesn't recognise the differences. It doesn't leave space for differences.
And if there's one thing my disabilities have taught me, it's that I can only flourish when I (and those around me) accept my differences - because then I can learn to live well with my differences. And you can't accept what you don't recognise exists.
So when I want to show that I relate to part of an autistic person's experiences I try to approach it from "That makes sense - I have [insert relevant trait] which has some similarities so what you say sounds familiar - but obviously it's not the same so there's a lot I don't understand."
Recognise the similarities and common ground, but also leave open, respectful, welcoming space for difference.
Because we aren't all a little bit autistic, but we are all human.
And I often hear people who are not autistic trying to show acceptance, and relate to an autistic person by saying things like "Yes, I'm a bit autistic too, because I don't like change/don't like loud noises/stim/[insert appropriate phrase here] too" or use the phrase "everyone is a bit autistic" to try and be inclusive.
Now here's the thing.
Loud noises make my spine cringe. If words are too loud I really struggle to understand what they mean. It's like I'm having to use so much energy up to cope with the loudness I can't focus on the meaning.
I have poor proprioception (I don't know where my body is in space when I'm relaxed). Pressure helps me know. So does movement. So when tired and trying to concentrate I may rock, or sit on my hands or on my feet, or wrap things tightly round my hands or fidget, or stretch repeatedly, or one of lots of other things that gives my brain enough input to stop having to work out where my limbs are so it can focus its fatigue-limited resources on more interesting things. Essentially: I stim.
Surely that makes me a bit autistic?
Actually, for me, they're part of my hypermobility syndrome.
I find it totally understandable that some autistic people stim, and it's something I can relate to, but I'm not autistic.
I wear ear plugs when I go to concerts, but I'm not autistic.
I am not on the autistic spectrum.
Because (as I understand it) the autistic spectrum isn't a spectrum from 'a little bit autistic' to 'very autistic'.
Everyone on the autistic spectrum is autistic. They have a different way of processing things to me (who is not autistic). The 'spectrum' part relates to individual variations within the autistic neurology (although there's probably a better way to word it than that). They each display different traits from multiple parts of the spectrum as part of their autism. For example an autistic person might avoid eye contact, or might make so much eye contact that the non-autistic feels uncomfortable. They might seek a certain sensory input or they might actively try to avoid it - thus making a broad spectrum of traits within the diagnosis of autism. Some traits might be mild or severe (like obsessive tendencies, or level of verbal communication) but that doesn't make someone more autistic or less autistic. The autistic way of processing is there. It is a part of who they are.
Does my insight into living with poor proprioception mean I know what it's like to be autistic?
No.
Because we don't experience life according to separate symptoms - we experience it as a whole being. For example, I experience poor proprioception alongside my ability to pick up non-verbal signals and hints easily. That means I don't know exactly what it is like to have poor proprioception and a limited ability to process non-verbal signals and hints.
Of course I use the insight from my poor proprioception to help me understand similar traits in autism, but I also need to step back and recognise that I'm not autistic so there will be differences.
"Everyone is a bit autistic" doesn't recognise the differences. It doesn't leave space for differences.
And if there's one thing my disabilities have taught me, it's that I can only flourish when I (and those around me) accept my differences - because then I can learn to live well with my differences. And you can't accept what you don't recognise exists.
So when I want to show that I relate to part of an autistic person's experiences I try to approach it from "That makes sense - I have [insert relevant trait] which has some similarities so what you say sounds familiar - but obviously it's not the same so there's a lot I don't understand."
Recognise the similarities and common ground, but also leave open, respectful, welcoming space for difference.
Because we aren't all a little bit autistic, but we are all human.
Exactly! And MRI scans in research are showing more and more that there are distinct differences between autistic and neurotypical brains. Participants are asked to think about various things, do mental puzzles, etc, and different parts of the brain light up, and/or there are different levels of activity in the same parts of the brain, between autistic and NT brains.
ReplyDeleteI HATE the "everyone's a little autistic" phrase. Partly because research is showing more and more that there are distinct neurological differences and partly because it comes across as patronising and trivialising/invalidating our experiences. It's a bit like people saying "We all get tired sometimes" when talking to someone with ME - it's nothing like that!
I agree very much. I'm on the Spectrum - properly diagnosed. I know several people who have characteristics very similar to people on the Spectrum, but they aren't on it. I agree that phrase sounds patronising and trivialising.
ReplyDeleteYou reached exactly the same conclusion as me on this one: https://dinahtheaspiedinosaur.wordpress.com/2015/07/05/37-dinah-the-aspie-dinosaur-and-the-well-meant-comment/ Great stuff, my friend.
ReplyDeletei cant believe i am reading this as when i told a friend i had a diagnosis of autism they said and i quote'i guess we are all a little bit aspie' i realise they were trying to be kind and sympathetic but all i can say is don't!
ReplyDeleteThere must be thousands with no diagnosis who are autistic and relate to people who have a diagnosis because it explains how they feel. I don't think anything can be won by being an exclusive member of the "autistic club". I diagnosed my own son then fought to get services where I live and he was the first to go through the DISCO assessment in our area. However, I can see my oldest sister, now aged 76, has autism but she's got through life and had three kids. I would argue, that since autism is a spectrum, there will be people at one end of that spectrum who do feel a little autistic and might struggle greatly with some things and not others. Really, we should all just accept each other for what we can contribute to society and stop expecting people to fit in pigeon holes.
ReplyDelete