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Erin Ekins (she/her) Profile picture
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Nov 13 • 4 tweets • 2 min read
The thing that worries me about the #Spectrum10K thing is all the autistic children, and autistic adults with higher support needs, whose parents/guardians will happily submit their DNA to the study without their informed consent.
This isn't even a 'ugh autism parents are awful' take - it's a 'lots of autism parents/guardians do not routinely pay attention to goings-on in the autistic community and therefore will be unlikely to see the information and warnings that are coming out about this study' take.
But there is also an element of 'some autism parents/guardians will be all about the aims of this study, and won't care if its a violation of the autistic person in their care's autonomy to submit their DNA'.
This is a really interesting and important thread talking about the ethics of how #Spectrum10k is getting 'consent' to use autistic people's DNA:

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More from @QueerlyAutistic

Erin Ekins (she/her) Profile picture
Nov 13
I am begging, pleading, not just for #ActuallyAutistic people, but anyone who has an autistic family member, to please not give #Spectrum10K your DNA. They want to use it to "identify modifiable risk factors for autism", ie. figure out ways to identify and prevent us being born.
They will lie about their intentions when they ask you for it. They have been deliberately obfuscating their aims and purpose for months, only to have the unredacted wording of their grant application forced out of them by a freedom of information request. liamodell.com/2022/11/12/spe…
They know what they're doing, and they have deliberately tried to cover it up and pretend that their aims/goals are something else. The only reason to obfuscate this sort of thing is if you KNOW that autistic people don't want this, and you want to find a way to do it anyway.
Read 5 tweets
Erin Ekins (she/her) Profile picture
Nov 12
There are so many areas that autism research could focus on in order to actually help us - so many #ActuallyAutistic people who have been routinely neglected by autism research - and yet all this money is STILL being funnelled solely towards finding the 'causes' of why we exist.
If researchers actually engaged with #ActuallyAutistic people, they'd get a mile long list of areas where we would like research to focus, which would keep their research careers busy for the rest of their professional lives, so why don't they do that? Because it's not about us.
I have to ask: if your endgame ISN'T to try and find a cure for autism, or to figure out ways to prevent any more of us being born, then why the hell are you focusing all your energy on finding the 'causes' of our existence rather than on the things that could ACTUALLY help us?
Read 4 tweets
Erin Ekins (she/her) Profile picture
Nov 12
Random #Ghosts thoughts: I don't think it was just opening up about her trauma that led to Mary being able to pass over, but the fact that the episode before, for the first time, she allowed herself to get genuinely angry about something unfair and told everyone off for it.
Earlier in the season, we saw Annie trying to help Mary connect with her anger and feel comfortable telling people off for their hypocrisy and unfairness, but Mary was only able to do this to people who couldn't actually hear her (shouting at living people who can't see ghosts).
But then, in the third episode, after she finally opens up about her witch trial trauma in episode two, we see Mary get genuinely angry about Alison forgiving the other ghosts so easily when she (Mary) was the only one who hadn't done anything wrong. To her, that was unfair.
Read 11 tweets
Erin Ekins (she/her) Profile picture
Nov 11
I keep seeing adults making long video reviews/commentaries of kids films, and they're all like 'this doesn't make sense, and here's a plothole, and this is silly and scientifically impossible', and I'm just like '...yeah, it's fucking Spy Kids?'.
Like, there's a difference between criticising kids films that are actually terrible, as in genuinely bad, or calling out kids films that contain actual harmful messaging that you never realised when you were younger, and dunking on kids films for...being kids films?
Oh no, a film about ten year old spies aimed at young children is fundamentally silly, what will we do???
Read 4 tweets
Erin Ekins (she/her) Profile picture
Nov 11
#ActuallyAutistic romcom pitch: a not-traditionally-feminine autistic girl, a bit of an outcast, immediately mistrusts the new, seemingly popular, more-traditionally-feminine girl at her school, but soon she discovers that the new girl is autistic too, and then they fall in love.
This pitch was brought to you by all those fake deep images online that try to pit traditionally feminine girls and less feminine (often more alternative) girls against each other, and how I headcanon that all of those images end with the two girls falling in love.
This tweet was also brought to you by the fact that being autistic in a traditionally hyperfeminine way, such as wearing only pink, being obsessed with horses, or knowing a LOT about clothes, is often not recognised as a presentation of autism, and it should be.
Read 4 tweets
Erin Ekins (she/her) Profile picture
Nov 10
As Matt Hancock claims he's joined #ImACeleb to 'raise awareness of dyslexia', it feels pertinent to mention that, as Health Secretary, he led a covid response that saw people with learning disabilities being up to 6.4 times more likely to die on average. local.gov.uk/our-support/sa…
People with learning disabilities were being given 'do not resuscitate' orders, often without their families' knowledge, so they would be left to die if they caught covid. Matt Hancock was Secretary of State for Health and Social Care at the time #ImACeleb theguardian.com/world/2021/feb…
I wrote about the way that people with learning disabilities were being deemed 'not worth saving' for @HUCKmagazine, and how disabled people were being left to die by the systems that were supposed to protect them on Matt Hancock's watch #ImACeleb huckmag.com/perspectives/o…
Read 4 tweets

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