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Autism Mothers Speak Out

Autism Mothers Speak Out 2022-07-03

VictorR

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VictorR submitted a new resource:

Autism Mothers Speak Out - Stories of Advocacy and Activism from Around the World

Raising an autistic child comes with its own unique set of challenges, not least of which is dealing with the constant scrutiny of your parenting. This collection of stories from all corners of the globe celebrates the love, commitment and advocacy work of mothers of autistic people. As they watch their children enter adult life, these mothers speak out about the highs and lows of family life and societal shifts in attitudes to autism.

Putting to bed the belief that autism is a result of...

Read more about this resource...
 
Chapter List (unnumbered):

Introduction
Carole and Jason (England)
Edith and Juan José (Columbia)
Irene and Pammy (South Africa)
Isabel and David (Spain)
Jackie and Joey (USA)
Jill and Michael (South Africa)
Joan and Jonathan (Australia)
Liz and Richard (England)
Mary and Kokeletso (South Africa)
Merry and Neeraj (India)
Petra and Michael (Namibia)
Samira and Fatima (Kuwait)
Shubhangi and Vishu (India)
Stephanie and Frank (England)
Thando and Tiisetso (South Africa)
 
Review #26

Once again, I’m dipping into the rich JKP catalogue of books on autism.

I was fascinated to see that this collection of stories is truly diverse – as I’ve noted in other reviews, the vast majority of literature on the spectrum comes from the US, Britain, Australia, and to a lesser extent, Canada, and so this was a treat in that we’re hearing from those in places where autism is little known.

In this anthology, while it is not explicitly stated, it seems that the editor had solicited essays on a “write whatever you want” basis, but with a prompting question of pushing back against the outmoded and discredited theory of “refrigerator mothers” since there are an unusual number of references to that term.

The autistic individuals mentioned in the book were mostly born in the 1960s to 1980s, and so from an earlier generation, and one where the majority of early diagnoses would now be (in DSM-5) classified as ASD2 and ASD3. I note this as the stories often touch on having difficulty finding resources, and many of the mothers write of being not only self-advocates, but of going on to establish organizations, schools, and to otherwise help other parents of autistic children. In that sense, it’s very heart warming and easy to emphasize with the struggles that many of them faced.

The organization is fairly typical, with some of the more interesting pieces in the beginning and end. There's a bit of everything - from signs (and missed signs), challenges with professionals and not getting help (one issue that's raised a lot is getting a diagnosis but being left alone), and something that I would have wanted to see more of is advice and support in general, though the book does overall convey a "you're not alone" tone.

Of course, not all books are perfect. My first criticism is that some passages read a bit auto-hagiographic-like.

The second criticism I have of this work is that I would have loved to hear if any of the autistic individuals spoken of might have to say. At the end of the day, it is about their mothers’ stories, but it would be neat to see if they had anything to add, if they so wished and were capable.

As for a score, this is a tough one. Primarily for the diverse origins of the stories, the relatively early era that they speak of, and that the parental narrative isn’t one we usually see in book form I’d give this a 5.0 (max score 6.0) despite my reservations.
 
Nice review, and I agree that it's pretty impressive how varied the places are which the voices come from (though it would have been nice to see more east asian experiences). I have a question regarding it though; Did the culture seem to have a big effect on the challenges the mothers faced, or did they seem relatively uniform? And were their class situation similar, or did they also come from various backgrounds within their cultures?

Upon seeing the title of the thread and that it was a review, I thought (and was hoping) the book was going to be about autistic mothers. I feel like that might be more useful for most of the readership here, and isn't something you read nearly as much about in literature.
 
Nice review, and I agree that it's pretty impressive how varied the places are which the voices come from (though it would have been nice to see more east asian experiences). I have a question regarding it though; Did the culture seem to have a big effect on the challenges the mothers faced, or did they seem relatively uniform? And were their class situation similar, or did they also come from various backgrounds within their cultures?

Thank you and excellent questions.

I agree in that we're really lacking in East Asian narratives - Naoki Higashida's The Reason I Jump and Fall Down 7 Times, Get Up 8 are both mainstream bestsellers, but that's one person, one story, from Japan. China and India both have massive populations, but we're not hearing their stories, at least not in English. I can't help but wonder if stigma is suppressing a lot of that. One theme that shows up in several stories in this book is about stigma from others, particularly in areas that are more traditionally conservative / superstitious, where people tend to believe that illnesses and conditions are a form of divine punishment.

Class origin is something that I was forgotten to address, and as is well known in North America, socio-economic background plays a significant part in diagnosis, diagnosis age, and supports. The stories in this book do generally conform to that as well, on revisiting the stories, I would give an approximate breakdown as (and some of the classifications are based on guesses due to insufficient info):

Upper Class: 3
Middle-Upper Class: 7
Middle / Working Class: 6
Socioeconomically challenged: 0
 
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