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

[kay]

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.

Exposure just makes it all worse for me and no child should be dragged to stuff if it is painful, I am an adult and can make up my own mind. After 46 years of exposure I need to ask myself if I really do need to be able to go to concerts, pubs, malls and other loud, crowded events and places just because a large percentage of people seem to enjoy that sorta thing? Nope, don't need it. Gives me more time for things I actually do enjoy. People who like to go pub hopping on Friday nights and find the library boring are not sitting around trying to figure out how to force themselves into enjoying libraries so why have I tried to learn to enjoy pubs? Why should I be expected to? Seems weird to me to want to be in a crowded space anyways and if it's important enough to me I can decide to be sick for awhile. Once went to an Obama rally and couldn't sleep or eat for 24 hours. Also ran a fever for about 8 hours after. Was it worth it? Yeah, it was for that bit of history and no one forced me, but I'm not putting myself through that for just anything.

 

[55853]

Exposure just makes it all worse for me and no child should be dragged to stuff if it is painful, I am an adult and can make up my own mind. After 46 years of exposure I need to ask myself if I really do need to be able to go to concerts, pubs, malls and other loud, crowded events and places just because a large percentage of people seem to enjoy that sorta thing? Nope, don't need it. Gives me more time for things I actually do enjoy. People who like to go pub hopping on Friday nights and find the library boring are not sitting around trying to figure out how to force themselves into enjoying libraries so why have I tried to learn to enjoy pubs? Why should I be expected to? Seems weird to me to want to be in a crowded space anyways and if it's important enough to me I can decide to be sick for awhile. Once went to an Obama rally and couldn't sleep or eat for 24 hours. Also ran a fever for about 8 hours after. Was it worth it? Yeah, it was for that bit of history and no one forced me, but I'm not putting myself through that for just anything.

It's definitely a benefit vs consequence thing. I like going to the pub a few times a year, but I couldn't do it weekly. I really don't see myself going to a nightclub, a concert, a music festival, or anything similar. If it's causing the child too much pain and he's not benefiting from it at all, I don't think anyone would think to continue. But if it's bearable for him and he's making progress, wouldn't that be worth it? I don't know how you'd be able to tell how much he's hurting, though.

 

[Mary Anne]

Children certainly don’t come with an instruction manual .

If Haynes had provided a hardback for each model of child I brought into the world I’d have found raising all three a little easier.


Meltdowns in public?
There’s a quote from the book I think (earlier in the thread)
Read the words, it’s all about her and feeling ashamed due to what she imagines other people were thinking.

Where’s the part describing what her son may have been feeling?
What did she do to try to understand him and what’s happening? protect him? Soothe him? Get him away from those triggers (when possible and if applicable)
??
In my humble opinion, her response to Zacs melt down reads as completely selfish. First priority was her image not Zac.
Perhaps if she’d have been watching zacs various stages of meltdown for the moment when one can approach she wouldn’t have noticed any reaction from anywhere else?
Who can say?


@Maryann
You wrote describing raising an autistic child was like living in a war zone.

It really isn’t.

I’ve done both, I am fit to make that statement.

All children with severe autism are still uniquely different. You cannot possible know how raising them ALL would feel like. On this forum there are autistic parents raising austic children, who describe the extreme challenges of raising them. Are you calling them liars? Your experiences are not to be judged as the same for all humans, nor all experiences. It might not be a “war zone” for YOU, but you are negating how many parents feel.

It’s sad that people speak of their own experience, but totally ignore the feelings, and life experiences of others. You ARE an expert in your own household but not the world’s!

 

[Mary Anne]

That's not been my experience, but of course that's just me. I've never been to any therapy, but you can read of how this technique is used professionally on others:

http://scholar.google.com/scholar?q=exposure+therapy

Of course exposure therapy works positively some of the time. All depends on how it’s done, the circumstances, and there are MANY factors that therapists have to be mindful of. If done wrong it can cause harm, but if done correctly it can change lives for the better.

 

[Mary Anne]

I didn’t ask you what your perceived outrage was over, I asked you to show me where I said going to an Elmo concert was a life skill. You are unable to do that for the obvious reason that I didn’t say that.

You are as @Fridgemagnetman said, indeed being disingenuous!

Zack loved Elmo. The author stated that. He did not new environments. I can see how she thought that seeing Elmo would make him happy, though it came with a high price of having to endure an unfamiliar place. I need to read this book in order to keep discussing it! The entire book is not about an Elmo concert, yet that is what everyone is obsessed with.

 

[Mary Anne]

why should someone be subject to go to a place they don't want to go? especially if it is really not that important?

It was important! Zack loved Elmo. Obsessively. So that’s why the author took his to see Elmo!

 

[Mary Anne]

it might not have worked and zac could be permantly scarred by his experience at the elmo concert but hasn't expressed that yet either because he doesn't have the language skills or because he's forgotten.

But maybe it helped and improved his life too! No one here has read the book, and are making all kinds of uninformed assumptions.

 

[Fridgemagnetman]

All children with severe autism are still uniquely different. You cannot possible know how raising them ALL would feel like. On this forum there are autistic parents raising austic children, who describe the extreme challenges of raising them. Are you calling them liars? Your experiences are not to be judged as the same for all humans, nor all experiences. It might not be a “war zone” for YOU, but you are negating how many parents feel.

It’s sad that people speak of their own experience, but totally ignore the feelings, and life experiences of others. You ARE an expert in your own household but not the world’s!

Do you think you ever project?

She was making a general point, imo referring back to the original article.

You're also making a point. About something else.
It does not necessarily relate to the post you quoted in the way you think it does.

Example - what about 1?
Yeh but you havent included 2.
But I'm talking about 1
Yeh but 3,4,5

It might not be a “war zone” for YOU, but you are negating how many parents feel.

She isn't negating anything. (In your head she is)
You apply this process of thought a lot. (From reading your posts)

She is representing another viewpoint which represents something not shown in the original article. Using her own family as an example.

Another viewpoint does not negate the original viewpoint.

With the right spectacles it enhances.

 

[Mary Anne]

Where exactly did I say going to an Elmo concert is a life skill? Please don’t put words into my mouth which I didn’t say. I specially mentioned swimming, riding a bike and crossing the road, all of which could be considered life skills.

It’s been stated repeatedly here how the Elmo concert was to enhance life skills of dealing with new environments, crowds of people, and exposure to the outside world in general. Zack and his mother lived strictly at home all of the time, and she wanted to help Zack get outside in the world. Exposure to the outside world- rather then be a prisoner trapped at home for the rest of one’s life seems like a very serious issue and life skill to me!

 

[Mary Anne]

@Mary Anne Do you see why I used the words “traitor” and “vilified” now? It’s been an interesting thread to read and quite enlightening how far apart some people’s views are on the same thing. Who is right and who is wrong I wouldn’t presume to say, maybe both are.

Either way, I don’t envy the attention the author is receiving, but it’s worth remembering the often used “if you’ve met one person with autism, you’ve met one person with autism!” Despite all the criticism the author has and is receiving, I firmly believe she did as is doing what she thinks is right for her child.

Children don't come with an instruction manual and if we receive no help, to some degree we have to make things up as we go along. She was never to know what he enjoyed or not until she helped him experience things. Sometimes we have to take a small risk, or children would never learn to swim, ride a bike, or cross a road as they could be viewed as dangerous, threatening activities, they could also be viewed as teaching life skills and an opportunity to experience and grow.

You are so right! This community is really uncomfortable at times. I wish I never had been exposed to the extreme, single-minded negativity of it.

 

[Fridgemagnetman]

It’s been stated repeatedly here how the Elmo concert was to enhance life skills of dealing with new environments, crowds of people, and exposure to the outside world in general. Zack and his mother lived strictly at home all of the time, and she wanted to help Zack get outside in the world. Exposure to the outside world- rather then be a prisoner trapped at home for the rest of one’s life seems like a very serious issue and life skill to me!

I think there have been other thread about how exposure therapy does not work as well for autistic people.
Perhaps a separate thread for this may be useful?

 

[Fridgemagnetman]

You are so right! This community is really uncomfortable at times. I wish I never had been exposed to the extreme, single-minded negativity of it.

Projection?

 

[Mary Anne]

Projection?

Do you think you ever project?

She was making a general point, imo referring back to the original article.

You're also making a point. About something else.
It does not necessarily relate to the post you quoted in the way you think it does.

Example - what about 1?
Yeh but you havent included 2.
But I'm talking about 1
Yeh but 3,4,5



She isn't negating anything. (In your head she is)
You apply this process of thought a lot. (From reading your posts)

She is representing another viewpoint which represents something not shown in the original article. Using her own family as an example.

Another viewpoint does not negate the original viewpoint.

With the right spectacles it enhances.

 

[Mary Anne]

I project? Not so. So many angry autistics project that the entire world of autistics are one such way. That it’s the parents at fault, and they are lazy, selfish, abusive. I keep reading about this. It’s sickening to make those blanket statements! I am here as aspie, and as someone who has worked with cognitively challenged people ANd their parents to let people know that everyone should speak of ONLY their own experiences, and NOT bash others for the way they parent, or feel, or live their OWN lives in dealing with severely disabled children.

Have you read the critics s of this book? It’s outrageous! People throw all sorts of dirt at this author, and DIY her her own experiences of dealing with her child. They try and put her down as a poor mother, and never once acknowledge just how incredibly insanely difficult it can be to raise a severely autistic child. I am tired of people not acknowledging that severely autistic children can be so difficult to live with and that they could have done it any better then the parents themselves.

 

[Fridgemagnetman]

I project? Not so

You sure?

Your example given here may be separate from my original statement based on your general categorisation of people.
Negative, was one statement.
Referring to people here, not critics of the book.

Each time someone makes a point you respond with something else.
Not relating or responding directly to the point made.

Anyway, I'm out.

 

[Gracey]

All children with severe autism are still uniquely different. You cannot possible know how raising them ALL would feel like. On this forum there are autistic parents raising austic children, who describe the extreme challenges of raising them. Are you calling them liars? Your experiences are not to be judged as the same for all humans, nor all experiences. It might not be a “war zone” for YOU, but you are negating how many parents feel.

It’s sad that people speak of their own experience, but totally ignore the feelings, and life experiences of others. You ARE an expert in your own household but not the world’s!

@maryanne


I want you to quote where I called the parents of Autistic children liars please.
Word for word, exactly as I wrote it please.
If your understanding of what I wrote is different to my understanding of what I wrote we can clear this up here and now.

 

[Fridgemagnetman]

@maryanne


I want you to quote where I called the parents of Autistic children liars please.
Word for word, exactly as I wrote it please.
If your understanding of what I wrote is different to my understanding of what I wrote we can clear this up here and now.

You called me a liar. Just then.

In invisible type.

Admit it.

 

[kay]

I know this thread was about a book and has become about an Elmo concert but I just looked at some video of Sesame Street Live, which I will assume is the Elmo concert, and it looks terrifying. Plenty of other ways to get out of the house than something that extreme. So glad my mom at least spared me that sort of nightmare when I was a kid.

 

[Nitro]

 

[Mary Anne]

You sure?

Your example given here may be separate from my original statement based on your general categorisation of people.
Negative, was one statement.
Referring to people here, not critics of the book.

Each time someone makes a point you respond with something else.
Not relating or responding directly to the point made.

Anyway, I'm out.

I am sure I am not projecting. Just look at the intensely negative response to the author’s book. The categorizing of masses of autism activists who deny anything to do with the perspectives from the family viewpoints is very real and factual. Despite the fact that most doing all the criticizing have not even read the book!

I have participated in so many threads on these boards, done plenty of research via social media including autism activists, reviews in depth of her book, read the entire Autism Speaks website, read of so many people in the hundreds who keep saying all the same things and ignoring the other side of raising children with severe autism. To be politically correct is to IGNORE how difficult, how family disruptive, emotionally devastating, exhausting, and how financially costly it is! No one is supposed to say that their kid is so violent that they are kept in the house, or that they **** everywhere? Shall we all stay quiet and sing joyfully - lying to ourselves about the very facts of what devastation severe autism CAN bring to a family? Especially early on in the child”s early years. I am a realist! I ALSO research vast amounts of material daily. I make assessments based on facts, not emotions.

In addition, several parents who are autistic have mentioned they have witnessed the very same thing....that the needs of parents don’t matter; that to say anything about the difficulties is to be ostracized from the autism community, and that even discussing one”s own challenges online is bad.

When there is a massive negativity to the whole subject matter, anyone could observe what is going on. The negative criticisms are VERY LOUD in denouncing parents, autism organizations, and the general severity of trying to raise a child with intensive autistism. They want to sweep everything under the rug, so to speak. This is pathetic. Just because SOME parents have raise their autistic children somewhat easily, does not mean that every parent can or is equipped to do so.