12 Comments
author

Thanks, Hanna! I had journaled it all that morning so I had already felt the emotions when putting it onto paper. Then typing up from notes in the evening gave me the head space to have processed those emotions throughout the day, and typing was more of an academic exercise which helped me. I think the time that lapsed in between prevented any later overshares, and also stopped me over analysing to an extent I don’t currently have the capacity for 😊

Expand full comment

This is such an interesting and important issue. One thing that really kept spinning through my mind as my kid went through autism testing and we sort of came to finally realize the entire family is deeply neurodivergent, is that the way we diagnose neurodivergence today is exclusively medical. Meaning we only ever look at those aspects of it that make you unable to function in 'normal' society, and if you have found adaptive mechanisms or you just mask well enough or you have other ways of coping you will never be diagnosed. That's why kids get 'undiagnosed' - they were maybe given some adaptations, they began to cope better, and the doctors are like 'oh look!! The autism is cured!!' Huzzah!!' Because they only think of the maladaptive traits as 'real autism'.

I am possibly autistic but definitely severely ADHD (I am also coming to think these two are sort of sides of the same coin, not two totally separate things) and my husband is textbook autistic, but neither of us ever got any assessment because a) we grew up in a time and place where it wasn't really a thing and b) because we had both sort of found ways to adapt and were outwardly sort of 'normally performing' while keeping all our 'weirdness' out of sight. Our kid wasn't able to swing that and started having issues in school so he got flagged immediately when he started disturbing the general flow of things. But the moment he got some help and wasn't a disturbance anymore they immediately wanted to withdraw all of his support because 'he's better now'.

We basically don't look at people as whole people. We look at them as collections of symptoms.

On the 'everyone is a little autistic' line I totally get what you are saying about it, but I have always thought it comes from the fact that most autistic and ADHD traits are in essence still just normal human traits, just expressed in a more extreme way. So I sort of do get that people will see things in themselves that are like a baby version of our behaviors and go 'oh ok well I have a bit of that too... not as much as this person but I guess we're all somewhere along that line' and that, along with the fact that we really don't still have a super clear grasp on all the intricacies of neurodivergence, makes people hold this view... I don't think it's meant to disparage against us or take anything from us (though of course it CAN be used that way, and some people definitely do). But until we start looking at neurodivergent people as entire people, I think we will keep misunderstanding neurodivergence.... For one thing I think there are WAYYYYY more of us than we generally think. I think we might be half and half with the neurotypicals. It's just that so many of us have learned to blend in.

Expand full comment
author

Hi Lidija, thanks for your thoughtful response :)

I agree, it is dreadful that the assessment and diagnostic process is entirely deficits based. That is crazy that the supports that enabled your child to succeed were removed when they were consistently "successful". How ridiculous!

You are right, our neurodivergent traits are all human traits and there certainly are a lot of us around!

Expand full comment

I’m curious how it felt writing this! I felt your emotions coming through especially towards the end. Loved it. All of those feelings are so valid!

Expand full comment
Aug 6Liked by Sam Galloway

So much comes to mind as I read, and I want to comment but by the time I get to the end I've forgotten 😜. However I just stopped reading partway through to specifically comment on this before I forget: 'Wait, am I now gaslighting myself?'. I believe I have unknowingly practiced this for 50 years and if it was possible I'd hold a master's degree in it. Not recommended. No idea how to stop though. 😑

Expand full comment
author

I know what you mean, and I think it’s part and parcel of internalised ableism. It feels like it’s one of those things that we don’t realise about ourselves unless we are really looking for it, but it’s hard to spot and stop in the moment 😭

Expand full comment

My favorite thing about this is the feelings under the "How I feel when neurotypicals deny..." I appreciate how you broke them down like that. Thank you for writing this.

Expand full comment
author

I’m glad you enjoyed it! 🥰

Expand full comment

I just kept nodding all the way through. I want to write a much longer and in depth thank you to you for writing this but it is late, and everyone is sleeping, and I’m overwhelmed and exhausted.

But this is exactly what I needed to read before falling asleep.

Thank you.

Expand full comment
author

Hi Wake, thanks for your comment. No need to thank me, I'm so glad it resonated with you. I have just woken up from a nap after much overwhelm and exhaustion too. I hope you are feeling well rested now :)

Expand full comment

Thanks for this. It's always helpful to learn how other Autistics experience life in this allistically biased world. I've always felt very uncomfortable with that "everyone's a little autistic" trope because I know people usually mean well when they say it, but it doesn't feel good at all to hear it because of all the things you so eloquently listed here. It's hard enough without kids. I can't even begin to imagine how hard all this would be if I was raising kids at the same time. I think sometimes it's those well-meaning dismissals that are the hardest to cope with because one facet of ableism that is hard to confront is the expectation that we should excuse the harm if the intention was benign (i know this happens with all forms of oppression, but i think it is more glaring with ableism because of how non-disabled people think we always need their help with everything). We have a saying in social justice world: Recognize intention; attend to impact. I try to remember this when I start to feel guilty for being angry or frustrated with well-intentioned ableist interactions. The comfort of that person is not more important than mine. I'm allowed to call them on ableist crop even if they didn't intend for it to hurt me.

Expand full comment
author

Yes, you are so right! But to be honest my anger and frustration levels are at an all time high in autistic perimenopause, and my emotional regulation is somewhat lagging. I really struggle with tropes, but also I have been thinking in very cliched ways around grief since my Dad died. Urgh. Internalised ableism is the gift that keeps on giving!

Expand full comment