Mom shares the less-than-pretty truth about raising a child with autism in ‘Autism Uncensored’

[Fridgemagnetman]

It's not intended to be a strawman. I'm not sure I understand you - by "worlds" do you mean situations? I'm "introducing" them because that's how I think - if it's ok in the context of one "world", is it ok in this other "world", and if not, why not? What's different? If I can isolate that, I can understand. But I can't isolate the difference, despite lurking for years. That's why I'm asking. Because I've tried to understand, but I can't.

Something must be different to mean one is ok but the other is not, right? So in plain English, relating specifically to what we're talking about, what's the difference? Please don't reference foreign (to me) films or play on English, I genuinely can't follow it like you're intending, therefore meaning is being lost in translation.

Or, as contexts go, John Locke :-
http://enlightenment.supersaturated.com/johnlocke/BOOKIIChapterXIII.html

Thus, a company of chess-men, standing on the same squares of the chess-board where we left them, we say they are all in the same place, or unmoved, though perhaps the chess-board hath been in the mean time carried out of one room into another; because we compared them only to the parts of the chess-board, which keep the same distance one with another. The chess-board, we also say, is in the same place it was, if it remain in the same part of the cabin, though perhaps the ship which it is in sails all the while. And the ship is said to be in the same place, supposing it kept the same distance with the parts of the neighbouring land; though perhaps the earth hath turned round, and so both chess-men, and board, and ship, have every one changed place, in respect of remoter bodies, which have kept the same distance one with another. But yet the distance from certain parts of the board being that which determines the place of the chessmen; and the distance from the fixed parts of the cabin (with which we made the comparison) being that which determined the place of the chess-board; and the fixed parts of the earth that by which we determined the place of the ship,- these things may be said to be in the same place in those respects: though their distance from some other things, which in this matter we did not consider, being varied, they have undoubtedly changed place in that respect; and we ourselves shall think so, when we have occasion to compare them with those other.

 

[Fridgemagnetman]

I ask you, how on earth would you know if an “NT” shows up? They might be in the autism spectrum too! They might have an autism child in their family. What does it matter to LABEL each other? I say if anyone shows up here, they are seeking answers, and knowledge. I found out I am aspie, and suffered my entire life because it. But it does not matter why someone comes here, it matters that they came here to educate themselves, and find help.

My example referred to something else. Based on the assumption that it could be agreed an NT showed up.

Your statement has no relevance to mine.

Viewed by itself I can see your point.

What does it matter to label each other?

Convenience,brevity.

Let's meet next Tuesday.

''Dont define my existence with sounds that represent days."

 

[55853]

Whether intended or not. It was.
Big difference.

Use of the word ''intended' here is very interesting.

It's what I would call a slippery word, distancing and reframing a previous statement after being called on it. At the same time not addressing the statement I made about it.

A trend that creates circular non productive discussion.

I wouldn't look too much into my word choices, I don't know how I passed English in school, I'm terrible at it, as you will see by what I am about to say next.

Situations within a world. You're introducing 'them' as aliens into the closed world.
My example refers to a specific thing. What you originally said.
You introduce 'them' and while it seems to relate and it may do in a different context. It doesn't.

Ie you're introducing a wider discussion to a specific example.

Think of it as putting legs on a snake.
My example was a snake.
Your wider argument was the legs.

Is the "world" this site? And the "aliens" are "NTs"? "Them" as other contexts? I know you must be talking about what I'm saying, but I'm not good at these plays on English. I can't think of "putting legs on a snake". I know you're not literally talking about putting legs on a snake, but I don't understand what you mean instead. These analogies are lost on me, I'm too literal, as you've already pointed out.

Context

Thank you, I appreciate not having to decode what you are saying. So what is it about the context? Is it something specific, a set of things?

Or, as contexts go, John Locke :-
John Locke: An Essay Concerning Human Understanding

Thus, a company of chess-men, standing on the same squares of the chess-board where we left them, we say they are all in the same place, or unmoved, though perhaps the chess-board hath been in the mean time carried out of one room into another; because we compared them only to the parts of the chess-board, which keep the same distance one with another. The chess-board, we also say, is in the same place it was, if it remain in the same part of the cabin, though perhaps the ship which it is in sails all the while. And the ship is said to be in the same place, supposing it kept the same distance with the parts of the neighbouring land; though perhaps the earth hath turned round, and so both chess-men, and board, and ship, have every one changed place, in respect of remoter bodies, which have kept the same distance one with another. But yet the distance from certain parts of the board being that which determines the place of the chessmen; and the distance from the fixed parts of the cabin (with which we made the comparison) being that which determined the place of the chess-board; and the fixed parts of the earth that by which we determined the place of the ship,- these things may be said to be in the same place in those respects: though their distance from some other things, which in this matter we did not consider, being varied, they have undoubtedly changed place in that respect; and we ourselves shall think so, when we have occasion to compare them with those other.

While I understand or can look up what each of those words means in isolation, I can't piece together the meaning here. My English isn't good enough. I'm sorry, but I don't understand this piece of text. Not at all.

 

[Joel's Hear]

Or, as contexts go, John Locke :-
http://enlightenment.supersaturated.com/johnlocke/BOOKIIChapterXIII.html

Thus, a company of chess-men, standing on the same squares of the chess-board where we left them, we say they are all in the same place, or unmoved, though perhaps the chess-board hath been in the mean time carried out of one room into another; because we compared them only to the parts of the chess-board, which keep the same distance one with another. The chess-board, we also say, is in the same place it was, if it remain in the same part of the cabin, though perhaps the ship which it is in sails all the while. And the ship is said to be in the same place, supposing it kept the same distance with the parts of the neighbouring land; though perhaps the earth hath turned round, and so both chess-men, and board, and ship, have every one changed place, in respect of remoter bodies, which have kept the same distance one with another. But yet the distance from certain parts of the board being that which determines the place of the chessmen; and the distance from the fixed parts of the cabin (with which we made the comparison) being that which determined the place of the chess-board; and the fixed parts of the earth that by which we determined the place of the ship,- these things may be said to be in the same place in those respects: though their distance from some other things, which in this matter we did not consider, being varied, they have undoubtedly changed place in that respect; and we ourselves shall think so, when we have occasion to compare them with those other.

As fridgemagnetman knows my wife is an NT and has been a member of this site longer than it's been fashionable to be one. He has always been respectful to her point of view and vice versa.

 

[Mary Anne]

I sort have gotten lost by this dialogue.

 

[Aidan49]

I've heard of this woman before. I think I read an article about her a few weeks back. The backlash being against her exposure therapy techniques.

I kind of feel conflicted about this. I don't like the idea of dragging children along to social situations. Especially if the child feels uncomfortable and a meltdown occurs. I do wonder if these social occasions are more for the parent's benefit then it is for the child.

However i do like her more realistic views on her son's future. After reading about so many blogs and books from mothers about their children with the word 'cured' and vaccine' in the title to have a parent lower their goals for their child is pleasing.

 

[Gracey]

...are more for the parent's benefit then it is for the child.
....

That is what I was trying to say.
I viewed the article as a mother trying to change her son because what he’d been diagnosed as, wasn’t enough for her, wasn’t acceptable and wanting world wide sympathy and generate an income off the back of it.

Just because her son may never read and understand the book doesn’t mean it’s okay to betray his trust and let the world know he smears crap on walls and so on.

Many, many parents just ‘get on with it’.
Play with the hand they’re dealt.
My own three have aspirations, paid employment and are contributing to society.
I played on their strengths and they have a good idea about how to deal with some stresses and problem solve.

I don’t have any expectations of them. I won’t try to change them in any way but I will support their choices.
“Their choices” being the important words here.
I wouldn’t presume to know what’s best for them based solely on what I want.

 

[Ames]

"I was wrong in my posts about this. I have trouble reading and processing sometimes."
This is off topic, but I just wanted to send you an e-hug for this comment! Not being able to process events, words, and emotions fast enough to react appropriately/in a timely manner is the story of my life. Trying to explain it to others usually doesn't help. Many here experience the same; I just wanted to remind you that you aren't alone.

 

[Mary Anne]

That is what I was trying to say.
I viewed the article as a mother trying to change her son because what he’d been diagnosed as, wasn’t enough for her, wasn’t acceptable and wanting world wide sympathy and generate an income off the back of it..

I disagree with this. I do not know the author, but I would say that having reasearched her and her non profit to have public spaces such as parks and museums have events where children with severe autism are allowed, and to be aware of all the things that could set them off-is a good thing. She is not “generating income off the backs of it.” As I said, we all need to find income, support, and emotional support in this world. Parents of severe low spectrum children do not have enough support of ANY kind. There is nothing wrong with her writing a book about her son’s life, or her own struggles. Parents of severely autistic children often live in a war zone, get no rest for years, and suffer from severe violence, chaos, anxiety, depression, and social ostracizing. They do the best they can, and then are shamed and bashed later in for all the wrong things they did.

It’s human to want things to get better. It’s human to try to change things. I believe that to not hope for change is to succumb to depression and suicide...as that one women does in that dreadful Autism Speaks commercial.

Sometimes it’s therapuetic to air problems, challenges, fears, emotions and anger one feels. If you have not read the book, or learned of her great volunteerism in the world of autism, you have no basis to judged her. You also seem to feel that parents don’t warrant sympathy. That’s fine for you, I find that cold, unrealistic, and inhumane. IMHO. Have you ever watched the old movie about Helen Keller called “The Miracle Worker?” If not for her teacher putting demands on her, Helen Keller would have never learned to read, speak, or communicate in any meaningful way. I first saw that movie in the 1960s and it is one of the best movies I have ever seen.

One last thing...It’s gotta be easier for an autistic person who endured some miserable times in childhood to parent other challenged kids. You might just have the right tools to do it, but with no experience, how would a NT parent know what to do? How to do it? Heck, even doctors, educators, and therapists are still learning, and continually adjusting techniques. It’s a whole lot better then it was say 25 years ago. People are learning, but please give credit to the parents who survived this autism decades ago. They survived it just as much as you did. They deserve to be heard! Just as YOU do.

 

[Aidan49]

doesn't this exposure therapy imply that the concerns of the autistic child are not valid? that by whitney dragging her son to that elmo concert when he was clearly uncomfortable she's basically saying: "i don't care how you feel about this. you are going to go there and enjoy it because it makes me look like a good parent and i'm tired of failing with you." ?

 

[kay]

doesn't this exposure therapy imply that the concerns of the autistic child are not valid? that by whitney dragging her son to that elmo concert when he was clearly uncomfortable she's basically saying: "i don't care how you feel about this. you are going to go there and enjoy it because it makes me look like a good parent and i'm tired of failing with you." ?

Good question. Is going to concerts somehow essential for the kids well being? She may mean well but having dragged myself to a concert before (not Elmo, it was Joan Jett when I was in high-school) I should have learned that exposure doesn't help, it just hurts for a few weeks. But since I didn't entirely learn my lesson I guess it might be too much to expect an NT mom to realize she isn't really helping her kid. I guess she may be unable to imagine a happy, fulfilling life without loud, noisy, crowded "fun".

 

[Aidan49]

Good question. Is going to concerts somehow essential for the kids well being? She may mean well but having dragged myself to a concert before (not Elmo, it was Joan Jett when I was in high-school) I should have learned that exposure doesn't help, it just hurts for a few weeks. But since I didn't entirely learn my lesson I guess it might be too much to expect an NT mom to realize she isn't really helping her kid. I guess she may be unable to imagine a happy, fulfilling life without loud, noisy, crowded "fun".

And i think i've read that there are cinemas, concerts, hotels, or whatever else that do autism friendly times. which is a win win for everyone.

 

[Mary Anne]

doesn't this exposure therapy imply that the concerns of the autistic child are not valid? that by whitney dragging her son to that elmo concert when he was clearly uncomfortable she's basically saying: "i don't care how you feel about this. you are going to go there and enjoy it because it makes me look like a good parent and i'm tired of failing with you." ?

How would anyone have known what he was thinking? WERE ANY ADULT AUTISTICS THERE TO COACH AND GUIDE HER? No. Should she have instutionalized him? No, I disagree completely. That is not why she took him there at all. She wanted to HELP him. Break through and make contact. No parent wants to take a melting down child out because it always makes the parent look bad. NOT GOOD. Parents hate the negative, admonishing eyes of society judging them, demanding why they can NOT control their child. No parent enjoys those screaming, violent melt downs. No one else wants to witness those horribly loud scenes either. No parent wants to chance her child hurting some other kid out in public either. Or breaking stuff in the store. So the idea that she took him out “for her own gain” is simply insanely ludicrous.

Maybe she got sick of being a prisoner trapped in her home caring for him all day. Thats a normal human emotion. It’s unrealistic to deny the intense pain and suffering parents go through when raising a child with severe autism. They have lived through “a war” for many years. They do the best they can. Give them a break! Parents of autistic children are clearly NOT “failures.” They are immortal heros in my eyes- if they manage to survive in one piece.

Her child seemingly was uncommunicative, right? How would a parent know “his concerns?”(as you said). He was “uncomfortable” most of his waking hours! What should she have done? Locked him in closet to vegetate his life away? No. Remember, that autistic adults were not around to help communicate with her about these efforts as you all are NOW.

I disagree in letting a child vegetate. No kid should vegetate. All kids (NTs as well) go through unpleasantness in life- it’s part of growing up. I am pretty sure her book has only a small portion devoted to this therapy you disprove of. What of the rest of her book? Did you find value in reading it?

Are you working with autistic children ? Are you coaching parents so they know what is going on in their child’s head? Do you spend time each day helping autistic people live as independently as possible in a social work setting? No one was there to help the parent (author). The field of autism is changing. Let the doctors, therapists, and parents know what they are doing wrong...but educate them gently. Stop criticizing things that happened in the past, and make a plan to help move autism awareness and treatments forward. The time for judging and blaming is over.

 

[Mary Anne]

Good question. Is going to concerts somehow essential for the kids well being? She may mean well but having dragged myself to a concert before (not Elmo, it was Joan Jett when I was in high-school) I should have learned that exposure doesn't help, it just hurts for a few weeks. But since I didn't entirely learn my lesson I guess it might be too much to expect an NT mom to realize she isn't really helping her kid. I guess she may be unable to imagine a happy, fulfilling life without loud, noisy, crowded "fun".

Exposure does work! I did it to myself over a long period of time (at several key points in my life) and surprised myself greatly. Exposure can work if done gradually.

 

[Mary Anne]

And i think i've read that there are cinemas, concerts, hotels, or whatever else that do autism friendly times. which is a win win for everyone.

Yes, it’s this same author who started that practice in the USA.

 

[Aidan49]

How would anyone have known what he was thinking? WERE ANY ADULT AUTISTICS THERE TO COACH AND GUIDE HER? No. Should she have instutionalized him? No, I disagree completely. That is not why she took him there at all. She wanted to HELP him. Break through! Help him. No parent wants to take a melting down child out because it always makes the parent look bad. NOT GOOD. Parents hate the negative, admonishing eyes of society judging them, demanding why they can NOT control their child. No parent enjoys those screaming, violent melt downs. No one else wants to witness those horribly loud scenes either. So the idea that she took him out “for her own gain” is simply insanely ludicrous.

Her child seemingly was uncommunicative, right? He was “uncomfortable” most of his waking hours. What should she have done? Locked him in closet to vegetate his life away? No. Remember, that autistic adults were not around to help communicate with her about these efforts as you all are NOW. Are you working with autistic children ? Are you coaching parents so they know what is going on in their child’s head? No one was there to help her. The field of autism is changing. Let the doctors, therapists, and parents know what they are doing wrong...but educate them gently.

I disagree in letting a child vegetate. No kid should vegetate. All kids go through unpleasantness in life- it’s part of growing up. I am pretty sure her book has only a small portion devoted to this therapy you disprove of. What of the rest of her book? Did you find value in reading it at all?

but he didn't like going to the elmo concert, to him that was torture. so i really don't get the point of the mother taking him there unless she wanted to gain some kind of victory against autism. if it was somewhere like the doctors or the hairdressers i would understand.

and it seems that you are putting words in my mouth. i never said about letting a child vegetate. i just feel that this battle with her son at the elmo concert seemed pretty pointless.

also the author wrote this book, so she should be prepared to be judged for it.

 

[Aidan49]

Yes, it’s this same author who started that practice in the USA.

so she's either a hypocrite or worked out that exposure therapy doesn't really work.

 

[55853]

doesn't this exposure therapy imply that the concerns of the autistic child are not valid? that by whitney dragging her son to that elmo concert when he was clearly uncomfortable she's basically saying: "i don't care how you feel about this. you are going to go there and enjoy it because it makes me look like a good parent and i'm tired of failing with you." ?

Or does it make the child more resilient? Build tolerance? Allow the child to find a way to cope?

I see it more as "I know you feel this way now, but you'll see there's nothing to be afraid of if you wait for your panic to pass, and you'll enjoy it once that happens"

I think that being repeatedly forced to do things that terrified me, that made me feel sick, that hurt me, that made me uncomfortable, etc. made me stronger. I now willingly force myself to do things I currently find impossible. I'm not sure I'd have that drive if I was protected from anything that made me uncomfortable.

But of course, I can only speak for myself, and I'm talking only of the benefits.

 

[Mary Anne]

but he didn't like going to the elmo concert, to him that was torture. so i really don't get the point of the mother taking him there unless she wanted to gain some kind of victory against autism. if it was somewhere like the doctors or the hairdressers i would understand.

and it seems that you are putting words in my mouth. i never said about letting a child vegetate. i just feel that this battle with her son at the elmo concert seemed pretty pointless.

also the author wrote this book, so she should be prepared to be judged for it.

Did you read the book? You have heavily criticized what she did wrong. I would like for you to tell me what she SHOULD have done right. OR, what she DID do correctly.

So you say he went to an Elmo concert, and it did not work - that’s what is called an “experiment.” Did she move on to something else, OR KEEP TAKING HIM TO ELMO CONCERTS AS A WAY TO TORTURE HIM? Really, the whole book has got to be about more than one single Elmo concert.

 

[Mary Anne]

so she's either a hypocrite or worked out that exposure therapy doesn't really work.

But it is used even in 2018, and CAN show positive results. Scientifically, it can be proven to work with, of course, varying results.