The Lost Girls of Autism

The Lost Girls of Autism: How Science Failed Autistic Women - and the New Research That's Changing the Story | Gina Rippon

I love the Māori word for autism: Takiwātanga, which means "in their own time and space". So respectful and inclusive ?
Keri Opai, who coined the word in 2017, explains how he came to it in this short article:
https://www.altogetherautism.org.nz/a-time-and-space-for-takiwatanga/

[Yes, it appears that I will be spamming my own feed with this book! ?]

kspenmoll Thank you so much for the article!!!! 4d

quietlycuriouskate Love this! I think I am my best self when in my own time and space, and then I am able to drop the shields (and masks!) around others, too. 4d

Bookwomble @kspenmoll You're welcome 😊 4d

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Bookwomble @quietlycuriouskate 💯% 😊 4d

kelli7990 I have Autism. I didn‘t know there was a Māori word for it. 3d

Bookwomble @kelli7990 ❤️♾️❤️The author cites several non-English words for autism, most of which are some variation on the concept of inwardness and loneliness (unfortunately), but the Māori word and the Taiwanese are both more positive. The Taiwanese word is "Xingxing -de háizi", which literally translates as "children of the stars", which seems to me similar to the English idiom "head in the clouds", both of each I like ? 3d

TieDyeDude The Lost Girls is the UK title, US title is Off the Spectrum. Looks really interesting, I'll be interested in your takeaway at the end (and throughout 😄)

Off the Spectrum: Why the Science of Autism Has Failed Women and Girls

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Bookwomble

The Lost Girls of Autism: How Science Failed Autistic Women - and the New Research That's Changing the Story | Gina Rippon

I'm not out of the introduction and already hugely impressed by Rippon's approach. As a neuroscientist with decades of autism research behind her, she starts with an apology for having missed (along with everybody else in the field) the prevalence of autistic women. While it can be slow to change, scientific understanding *does* change, even though cultural understanding often lags behind and acts as a brake on social change. ⬇️

Bookwomble What has already made the price of the book worth paying for me is the story of an undiagnosed autistic mother realising her autism when anxiously taking her son to his first day at nursery and seeing him fit straight in with the other children in a way she had never experienced herself, struggling to understand how he managed it so effortlessly. I had an intense emotional recognition of her paradigm-shifting insight. Oof! 4d

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Bookwomble

The Lost Girls of Autism: How Science Failed Autistic Women - and the New Research That's Changing the Story | Gina Rippon

3 #FirstLineFridays

Preface: I should start with a confession.

Introduction: If you google 'famous historical figures who might have been autistic' the list of results will be headed by figures such as Albert Einstein, Thomas Jefferson, Nikola Tesla, & Hans Christian Andersen.

Chap.1: When trying to answer what appears to be a straightforward question - what is autism? - we immediately encounter the amorphous nature of the definition of autism.

Bookwomble @ShyBookOwl 5d

Leftcoastzen You see what‘s going on here in the US with RFK & autism? 😡😡😡😡😡 5d

Bookwomble @Leftcoastzen No - I just assume that I'm going to disagree with everything members of the Trump adminstration have to say and don't bother to listen. It saves time ? That said, I did hear that mini-Trump's sudden interest in "The Autism Threat" was a poorly masticated regurgitation of RFK junk. I'll check it out, but you're responsible for my high blood pressure! ? 5d

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Bookwomble @Leftcoastzen Sorry, "mini-Trump" is UK demagogue Nigel Farage - I'd also posted about his bandwagon jumping ? 5d

Bookwomble @Leftcoastzen Ah, I see that I and other neurodivergent people are to be targeted for eradication. Really good to know! His claim that autistic people don't contribute to the economy is not only false but suggests that a person's value is to be measured only by the profits to be extracted from them by capitalism. Forgive my language, but he can go fuck himself! (Sorry, I'm sweary today for some reason!) 5d

Leftcoastzen He is insane and stupid! So sick of this 💩 It‘s so maddening/Scary. Knowing to that some people here are fully aware of the insanity of all this & trying to fight, some blissfully ignorant, some cheering the regime on ! But this is how these things always go ! 5d

Bookwomble @Leftcoastzen Change can be slow, especially when it challenges the privileges of the powerful. Change is also inevitable. Conservatives tend to hark back to a Lost Golden Age' (e.g., MAGA in the US; The Empire in the UK) that never really existed as it is now imagined and which, by definition, is already passed. Of course, certain values and traditions are worth preserving, but as dynamic and unfolding processes, not as frozen museum pieces. 4d

kspenmoll Thank you @Leftcoastzen & @Bookwomble for this discussion. My Autistic son is both angry & terrified of RFK‘s beliefs & sees the parallels to Nazi Germany too clearly.( he wrote a research paper on the attitudes & rise of extermination of people w disabilities under Hitler). We have been attending local protests with like minded people etc. to share our voices. 4d

Bookwomble @kspenmoll I hope it helps your son to know that he is part of a global community. I hope it helps you to know that your son is valued and accepted by that community ❤️🫂❤️ Anger is the appropriate and valid emotion in the face of injustice. It gives us the energy to seek change. 😊 4d

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Bookwomble

The Lost Girls of Autism: How Science Failed Autistic Women - and the New Research That's Changing the Story | Gina Rippon

Next up: Gina Ripon is a neuroscience researcher who has previously written about the myths of binary sex-based differences between male and female brains, for which she was awarded the accolade of "Feminazi" by gender essentialists, so that's a recommendation.

In this book, she presents her research into the under- and misdiagnosis of autism in women. I took a peek at the pages on gender nonconformity, which are supportive of trans identities ⬇️

Bookwomble ... and which cast the recent Supreme Court ruling on the biologically-based definitions of gender as unscientific, which we've actually known for decades but, apparently, we've got to keep fighting the same battles 😮‍💨 However, we shall overcome ✊🙂 5d

IriDas I just watched an interview with her about this book. I didn‘t know about her other work. I will have to add it to my list. Also, I do hope we will win this battle. Here in the US, our reps seem to slowly be getting the message from the people. Hopefully they will do something before it is too late. 5d

Bookwomble @IriDas I do hope for a sea change in global politics away from the current authoritarian, oppression-of-the-marginalised trend. I'll see if I can find that interview. Thanks for the heads up 😊 5d

IriDas Here‘s the link: https://youtu.be/N1X8__QutRI?si=wesuc4GE6JV6bphe 5d

Bookwomble @IriDas Thank you! 💖 I thought of asking, but didn't want to impose ☺️ I'll watch it after I've finished the book in case there are spoilers about the ending 😅 5d

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IriDas

The Lost Girls of Autism: How Science Failed Autistic Women - and the New Research That's Changing the Story | Gina Rippon

Watched an interview with the author this morning so I‘ve added this to my reading list. I did read the negative and positive reviews. I agree with one of the negative views that the author went to great lengths to discuss the misuse of language and its negative impact only to repeatedly use the word “tribe” in place of community. I noticed it in the interview which is why I read the reviews first. Looks good otherwise. #toread #autism #asd

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