This book review really rubbed me the wrong way

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NowWhatDoIDo
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03 Dec 2023, 11:48 am

Lately I've been reading lots of books about autism, and this one popped up on my feed. The top review is this one from a parent of an autistic girl.
https://www.amazon.com/gp/customer-revi ... B08D3J8MRL

The quote that got me was this one:

Quote:
She is high-function and has hi IQ (of 135), but life has been so hard for the family. We have been with private therapists/psychiatrists/psychologists and IEP but it is so hard for her to understand how she is different and certain behaviors are hurting people around her and blocking her from success.


Wow, this is so damaging to think about their daughter. I don't even know where to begin!

First of all, if she is indeed very smart, then it's absurd to say that she can't understand how different she is. Being different must be a painful and constant reality for her. She doesn't understand her own lived experience?!?

Second, this is all told from the perspective of how her behaviors are "hurting people around her" and how hard that's been for the family. What about her? How has this constant barrage of therapy tailored to altering her "behaviors" affected her sense of self worth? How has this constant refrain of being the child who has ruined the lives of her parents damaged her?

I just got my diagnosis, but this is exactly the way people treated me when I was young. I thought I was broken. I guarantee she does too, and it breaks my heart.



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03 Dec 2023, 8:41 pm

absolutely agreed. Momma, if you think it is hell for you to raise an autistic kid, try being the kid for a while. No mention of the courage the daughter must have to face each day with struggles and the pain she must experience knowing her family hates her no matter how hard she tries. (ask me how I know) my heart goes out to the daughter and all of us who grew up knowing maybe not about our autism but that no matter what we did we were considered bad, wrong, a problem, a pain and unwanted. Daughter needs to write a book from her perspective.


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03 Dec 2023, 8:50 pm

My mother told me I was useless as tits on a bull.

It sounds like this daughter might be getting the same message.

I hope children's services get involved to shake some sense into that mother.


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03 Dec 2023, 9:23 pm

NowWhatDoIDo wrote:
Lately I've been reading lots of books about autism, and this one popped up on my feed. The top review is this one from a parent of an autistic girl.
https://www.amazon.com/gp/customer-revi ... B08D3J8MRL

The quote that got me was this one:

Quote:
She is high-function and has hi IQ (of 135), but life has been so hard for the family. We have been with private therapists/psychiatrists/psychologists and IEP but it is so hard for her to understand how she is different and certain behaviors are hurting people around her and blocking her from success.


Wow, this is so damaging to think about their daughter. I don't even know where to begin!

First of all, if she is indeed very smart, then it's absurd to say that she can't understand how different she is. Being different must be a painful and constant reality for her. She doesn't understand her own lived experience?!?

Second, this is all told from the perspective of how her behaviors are "hurting people around her" and how hard that's been for the family. What about her? How has this constant barrage of therapy tailored to altering her "behaviors" affected her sense of self worth? How has this constant refrain of being the child who has ruined the lives of her parents damaged her?

I just got my diagnosis, but this is exactly the way people treated me when I was young. I thought I was broken. I guarantee she does too, and it breaks my heart.

I've got an IQ in the 140s and I'm just now starting to grasp just how different I am from basically everybody else in existence.

For me personally, I may have severely deficient autobiographical memory as I remember lots of facts about what I've done and experienced, but very little emotion and I can't parse out and experience my memories that way that others allegedly do. Except for a small number of memories, I don't really experience them when recalling them. I do have an absolutely massive amount of information memorized and learn skills in an incredibly short period of time if I have the necessary time and energy though due to the same compression that Rob's me if the nuanced revisiting of my past memories.



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04 Dec 2023, 11:04 am

My heart goes out to the daughter. She probably thinks that her mum hates her. She probably feels like crap. If I had the money and I was more responsible, I'd adopt her.


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04 Dec 2023, 11:27 am

I've got some sympathy with the caregivers of autistic people, but it depends how far they take it when they voice their plight. And I think most ASDers understand and respond well if people simply explain to them how what they're doing is causing problems, rather than expecting them to get there intuitively. Also, anybody who chooses to be a parent would do well to think it through before taking the plunge, but some of them don't seem to, and then they think themselves hard done by for something they brought upon themselves. Children are not infrequently very hard work and can be a huge vexation to the spirit. End of lecture.



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04 Dec 2023, 11:30 am

I raised two autistic kids by myself and I'm autistic too. It wasn't easy especially with their assorted meltdowns and unique needs which most other people didn't understand.

I didn't know any of us were autistic when they were growing up, but never in a million years would I say their behaviour was hurting other people and blocking their success.

Lots of people said I coddled my kids too much or that they needed to buck up and tow the line, but I was the one saying they were successful just the way they were.


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carlos55
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04 Dec 2023, 12:53 pm

Unless you know the full story it’s best to reserve judgement on the situation of others.

Just because she has a high IQ don’t mean all is ok.

Maybe she has epilepsy, maybe some psychotic episodes.

Maybe some suicide attempts, some self harming. Maybe an eating disorder all nearly ended her life.

Maybe there’s been some 3am calls to the police in the middle of a meltdown that causes her to lash out and smash the house up

Takes two to tango as they say the person with the problem and the carer.

How old is the “girl” if she has Asperger’s it’s likely she is an older child

Does the person who maybe gives up their life to look after an adult have no say in the matter? Are they not allowed an opinion if they never asked to be or Ill equipped to be under great stress?


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Last edited by carlos55 on 04 Dec 2023, 12:57 pm, edited 1 time in total.

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04 Dec 2023, 12:56 pm

That's the typical view on autism expressed in the review- that the problem is how it affects the people around the autistic. That has to change. It's hard to deal with as a grown up independent autistic. For a child it's a nightmare.


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04 Dec 2023, 12:57 pm

carlos55 wrote:
Unless you know the full story it’s best to reserve judgement on the situation of others.

Just because she has a high IQ don’t mean all is ok.

Maybe she has epilepsy, maybe some psychotic episodes.

Maybe some suicide attempts, some self harming. Maybe an eating disorder all nearly ended her life.

Maybe there’s been some 3am calls to the police in the middle of a meltdown that causes her to lash out and smash the house up

Takes two to tango as they say the person with the problem and the carer.

Does the person who maybe gives up their life to look after an adult have no say in the matter? Are they not allowed an opinion if they never asked to be or Ill equipped to be under great stress?

I completely agree here. Intelligence doesn't automatically translate into self awareness or awareness of others.



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05 Dec 2023, 12:31 am

I agree that a high IQ doesn't always mean that a person on the spectrum has their stuff together. My IQ is 115, I need lots of help with living on my own and I have to wear pull-ups.


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05 Dec 2023, 12:36 am

carlos55 wrote:

Does the person who maybe gives up their life to look after an adult have no say in the matter? Are they not allowed an opinion if they never asked to be or Ill equipped to be under great stress?



I don't know what you mean by this. What do you mean by having say in the matter? My kids are adults who still have meltdowns and talk of suicide, the whole nine yards. I'm ill equipped to be under great stress, and I'm allowed an opinion to say it's a very difficult job. I have the right to talk about my stress or how hard it is. I still don't think it's OK to say my kids need to change so they can make other people's lives easier. That's not a helpful way to phrase things when talking about other adults. The last thing they need is guilt, shame, or stress, because they're doing the best they can --just like we all do.


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carlos55
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05 Dec 2023, 7:53 am

IsabellaLinton wrote:
carlos55 wrote:

Does the person who maybe gives up their life to look after an adult have no say in the matter? Are they not allowed an opinion if they never asked to be or Ill equipped to be under great stress?



I don't know what you mean by this. What do you mean by having say in the matter? My kids are adults who still have meltdowns and talk of suicide, the whole nine yards. I'm ill equipped to be under great stress, and I'm allowed an opinion to say it's a very difficult job. I have the right to talk about my stress or how hard it is. I still don't think it's OK to say my kids need to change so they can make other people's lives easier. That's not a helpful way to phrase things when talking about other adults. The last thing they need is guilt, shame, or stress, because they're doing the best they can --just like we all do.


Again you or I don’t know the situation or behaviour so can’t judge.

The highlighted comments never directly said anything about giving her guilt.

It never used that wording about change to make lives easier even though she would be forgiven for wanting that.

Think about it logically is she going to want her life harder? Is she going to want her daughter to be under more stress? More disabled?

The logical answer is no


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05 Dec 2023, 8:00 am

High IQ or not...
Sure, I can grasp the idea of having high IQ is not contradictory of little to no social and emotional awareness.


Having the social and emotional awareness of knowing one is different and with behaviors hurt everyone around them at the early age -- it doesn't equally help either.

However, it just doesn't work like that.

Children aren't equipped to regulate and process such revelation and knowing helplessness -- the shame, the guilt, the stress -- unless they're one of those types who do not get traumatized easily, usually with highly emotionally regulated parents who gets it (in which the character's case, is clearly not) with competent professional help; or are primarily psychopaths.


Heck most adults couldn't. Likely not alone. Let alone autistic.


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05 Dec 2023, 8:30 am

I don't know if she needed to put it in there about the IQ but maybe the situation with the reading. By the way, what's the book?



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05 Dec 2023, 8:36 am

i agree with everyone here but I think a more charitable interpretation is that the mother is saying that her daughter isn't able to see that some of her behaviors are making people avoid her or turn away from her, and she wishes that the daughter could learn to see that and maybe then be able act in a way to become more approachable, for the sake of the daughter.