K.J. Elphinstone

Subject: "Are autistic people just making it up?"

When I was questioned in this podcast, the gist of what was being said about autistic people was:

‘Maybe these people are not recognising a real pattern in themselves — maybe they’re just reaching for a label because society is crap.’

That was the implication.

(Minute 35:33)

https://neurosense.substack.com/p/why-we-need-to-reframe-autism-with

I answered ⬇️

#ActuallyAutistic #Neurodivergent #Autism #AuDHD #ADHD

Why we need to reframe autism with Katy Elphinstone

In the fourth episode of Let’s Talk Neurosense, we talked to Katy Elphinstone, autistic advocate, researcher and author of How to Raise Happy Neurofabulous Children: A Parent’s Guide.

Let's Talk Neurosense: the Psychology of Neurodiversity
Apr 10 at 4:25pmWeb
Show threadK.J. Elphinstone4d ago

Earlier in the conversation, I'd already described autism as a distinct pattern of being; not just ‘struggling in society’  

I talked about the hyper/hypo pattern that runs through autistic life. In sensory experience, emotion, imagination, attention, and responsiveness.

That isn't just random distress. It's a highly distinguishable and recognisable profile.

⬇️

Show threadK.J. Elphinstone4d ago

I also talked about monotropism; the distinctive depth and narrowness of autistic attention.

The tendency to go very deep, to struggle with switching, to get overwhelmed by competing demands - and to experience the world with such a particular intensity.

Again: not just ‘life is hard’, but a very specific way of processing and experiencing.

#Monotropism #Autism #AutismResearch

Show threadK.J. Elphinstone4d ago

My answer was that this whole framework is totally confused!

Current diagnostic criteria are built around pathology and clinically significant impairment. So of course, if you only look through that lens, autism will appear only as deficit.

It’s like sweeping a metal detector across a beach and then concluding that the beach is made of metal. But of course that is what you find, as metal is the only thing your instrument is built to detect. It doesn’t mean there’s no beach.

⬇️

Show threadK.J. Elphinstone4d ago

But that is a feature of the diagnostic model. It's not proof that autistic people are inventing a neurotype.

I also made the point that disability depends on context. The same autistic person may be 'diagnosable' in one environment and less obviously so in another... simply because support, stability, and context can make such a difference.

That doesn't mean the person has changed out of being autistic. It means context can affect how well they manage.

Those are two different things.

⬇️

Show threadK.J. Elphinstone4d ago

And crucially: autistic people didn't invent this gatekeeping system.

We were told, for years, that we wouldn't be believed without diagnosis. So people pursued diagnosis in order to be recognised, accommodated, and just... well, yes... believed!

Then, the existence of that gatekeeping gets turned back on us as though it proves something suspicious about us.

⬇️

Show threadK.J. Elphinstone4d ago

What I most object to is her slide from:

‘society is failing lots of people’

to

‘therefore maybe autistic people are just misreading their distress as autism’.

That just doesn't logically follow. 🤨

⬇️

Show threadK.J. Elphinstone4d ago

So no. Autistic people are not ‘just making it up because society is crap’.

The reality is more like this:

Society is often crap, and autistic people are then forced to explain their real differences through a diagnostic system built around pathology, gatekeeping, and disbelief.

End of 🧵

#Autism #ActuallyAutistic #EpistemicInjustice

Show threadKaja 4d ago
@KatyElphinstone
That is the sharpest analysis of the complexity of autistic traits (like monotropism), diagnostic criteria and gatekeeping in the context of society that I have read so far. This is such an important thread. Thank you.
Show threadK.J. Elphinstone4d ago

@KaCi

Wabbeee!! Thank you 🥰

If I'm honest the whole thing really crushed me - but I'm so angry - and that's giving me animation 😎

Show threadJo - pièce de résistance4d ago
@KatyElphinstone
I am a self dx’d autistic and had one convo with a psych my doctor referred me to, who does autism assessment who noted to my doctor I was probably ‘level 1 or 2 autistic’ but for whatever reason, even that was not enough. And my doctor has not acknowledged my autism as one of my medical issues & I may have been denied support as a result. I’m so angry & upset.
It makes it extra hard for me to trust doctors & get the care & supports I need.
Show threadK.J. Elphinstone4d ago

@JoBlakely

I think they're perhaps under pressure to pay less heed to autism etc. I may be wrong - it's just I'm hearing things through the grapevine similar to your experiences.

Show threadKevin Karhan4d ago
@KatyElphinstone THIS - ALL OF THIS!
Show threadK.J. Elphinstone4d ago

@kkarhan

🙏 😊 😎

Show thread<undef>4d ago
@KatyElphinstone I would also add that us autists are more likely to be attuned to noticing all the patterns of injustice and faults a crappy society has, and it itself is very distressing, and thus we're more likely to also voice out how crap the society is to us.
Show threadK.J. Elphinstone4d ago

@undefined_variable

Yes!! I talked about that in the podcast too 🥂

On substack:
https://neurosense.substack.com/p/why-we-need-to-reframe-autism-with
(On this one people can comment, like, etc. not sure if you need an account to do it though)

On Apple podcasts:
https://podcasts.apple.com/gb/podcast/lets-talk-neurosense-the-psychology-of-neurodiversity/id1883007944

On Spotify:
https://open.spotify.com/episode/19fSshl0XkXqiKPCp3uyzO?si=gDBCV9koQHKqvEMHqrZJnw&t=2249

Why we need to reframe autism with Katy Elphinstone

In the fourth episode of Let’s Talk Neurosense, we talked to Katy Elphinstone, autistic advocate, researcher and author of How to Raise Happy Neurofabulous Children: A Parent’s Guide.

Let's Talk Neurosense: the Psychology of Neurodiversity
Show threadJo - pièce de résistance4d ago
@undefined_variable @KatyElphinstone
I think this is a big part of why we are historically and continually villainized. We are more likely to be whistleblowers and in natural opposition to status quo and injustice. For a long time we don’t understand the ways of hypocrisy & lies in the world, we suffer and learn trying to navigate it… then suddenly we see it clearer than most. And they hate us for ‘seeing their nakedness’. They hate us for our willingness to say the emperor has no clothes.
Show threadK.J. Elphinstone4d ago

@JoBlakely

Exactly this.
I think we are dangerous grrr

@undefined_variable

Show threadsasutina13a is-a sasutina13a4d ago
@KatyElphinstone @JoBlakely @undefined_variable It seems as if they fear us on sight. But that is based on my own encounters.
Show threadJo - pièce de résistance3d ago

@sasutina13 @KatyElphinstone @undefined_variable

I usually get people a little enamoured and attracted to me. But then when I am so different, so unexpectedly uncontrollable and speaking my mind with actual thought out and informed original thoughts then they know I’m different, they can’t really connect bc we are operating from different worlds. Then they start to hate me and try to take me down a peg & all I see are their insecurities & ppl who don’t know who they are outside of groupthink.

Show threadsasutina13a is-a sasutina13a3d ago

@JoBlakely

Yes. I get that from people too.

@KatyElphinstone @undefined_variable

Show thread<undef>3d ago

@JoBlakely @sasutina13 @KatyElphinstone

One of my favorite things anyone has ever said of me, and this was said with affection not malice, one NT friend of mine who loved gossip once exclaimed in frustration "You're so annoyingly unknowable!" To this day I'm proud of that moniker 

But as with anything I find funny, there's definitely a lot of truth in it, I am pretty unknowable, especially to NTs. I guess we all are. And we all know they fear what they can't know...

Show threadAria.DNE3d ago

@undefined_variable I often wish I was more knowable.

@JoBlakely @sasutina13 @KatyElphinstone

Show threadzombiecide　馬雄3d ago

@KatyElphinstone This reminds me of people wondering if everyone's experience of red is the same (it's likely not) and the existence of red-green colourblindness

just because good design striving to be universally accessible is better for everyone doesn't mean colourblindness doesn't exist

Show threadcratermoon4d ago
@KatyElphinstone Her comment has strong "everyone is a bit autistic" vibes.
Show threadK.J. Elphinstone4d ago

@cratermoon

Yes, it does.

Show threadlbnvds4d ago
@KatyElphinstone I’d love to be ‘just’ making it up! If I can put it in simple words, imagine that my brain processes a petabyte of information at any given point-and if I want to communicate something, which is vital for our social survival, I need to use a lot of energy to ‘compress’ a thought into 1 megabyte so that people with typical hardware can understand it. It’s simply disabling in the long run.
Show threadSecondUniverse (she/her/they)4d ago
@KatyElphinstone I thought I was autistic for a long time but also thought I was "making it up". It was a painful sense of internal disbelief. That's why I went for a formal diagnosis. But even now, I can't fully shake that feeling.
Show threadK.J. Elphinstone4d ago

@SecondUniverse

I don't think you are - for what it's worth.