A Question About Autism Speaks

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The fact that any parent would agree with that call for action literally makes me feel sick to my stomach. I cannot imagine being a child growing up in a family where this is how my parents think of me. Granted, my children are far less impaired than many. But I believe our perspectives largely shape our realities. We cannot always change what cards life deals to us, but we can make a conscious effort to shape our own internal dialogue and what thoughts we allow ourselves to have.

"These families are not living...Life is lived...in despair."

I can promise you that if that is what is running through any person's head...whether they are parents with NT children, parents with ASD children, people with no children, or...ANYBODY, life will seem like an insurmountable challenge. Anyone with that theme running through their head will find themselves having difficulty coping, feeling depressed, and feeling overwhelmed.

My children are part of the "3 million" and I couldn't disagree with that whole vile post more. Were there times when my children were younger and more impaired where I laid in bed and cried because I didn't know what I was going to do? Yes. Were their times when my son's sensory seeking behavior left me so exhausted, emotionally and physically, that I worried if I would be able to keep it up? Yes. Were there times before my daughter was verbal where I felt nervous apprehension in the pit of my stomach when I imagined what her future would be like, particularly being an "older" parent and worried she would be left on her own when I died? Yes.

But even in those moments, I was not living my life in despair. Even in those moments, I did not view my children as burdens, or "missing" or "stolen" or any of the rhetoric that is often tossed about.

...so now I am rethinking my earlier post when I said that I think they should change their name to "Parents of Autistics United." That would not work, either. Because they do not represent me, and I would rather not have the entire nation look at me and my family as people who need to be pitied and who live a life of despair.

That may be their reality. But it is not mine. Because I choose it not to be.

I have said before to people who know me that my attitude would probably be different if my children were more impaired. Without exception, I have been told that others are certain it wouldn't. People who know me say that no matter what I am handed by life, I will always find a way to stay positive and focus on the good. To find a way to continue to live a life worth living. I don't know if that is true, of course, because I have only been handed the cards I have been handed. But I'd like to think that no matter what, I'd never identify with the above referenced post from Autism Speaks.

Verging on starting to rant, so I shall sign off now

To InThisTogether: Hi. I'm in a big hurry but will insert some comments in bold.First let me make it clear that I am on here for enquiry and not to advocate for Autism Speaks. It does seem to me, though, that the good they are doing far outweigh some of the negative and over-simplistic rhetoric in their fund-raising message. The problem is that the way people think frames the kind of organizations they make. It took me a long time to learn this, but I finally am beginning to grasp the concept that changing the way I think has more of a chance to affect the world than changing the way other people think. We ARE all in this together and the way I think will affect the way other people think. This does not mean that I mechanically agree with other people's points of view. Rather I am talking about thinking more comprehensively and in some way generating a field of active listening out of which communication can occur.

The fact that any parent would agree with that call for action literally makes me feel sick to my stomach. I cannot imagine being a child growing up in a family where this is how my parents think of me.

I am glad you are expressing your feelings and also sharing some ideas here, but to me the rhetoric of your message contains the same kind of hyperbole that you are objecting to in the message from Suzanne Wright, but neither of these makes me feel sick to my stomach. A lot of other stuff that is happening in the world DOES make me feel very sick to my stomach, though. So, InThisTogether, that is a great name you have chosen. I love it. What does this mean to you? Are you in this together with the people from Autism Speaks? I think you have already answered this in your message, so no, and I am, no, also, in the sense of agreeing with all of their ideas or approach, but I have compassion for the struggles these parents are having and the suffering they are going, and you do, too, right?

Granted, my children are far less impaired than many. But I believe our perspectives largely shape our realities. We cannot always change what cards life deals to us, but we can make a conscious effort to shape our own internal dialogue and what thoughts we allow ourselves to have.

You mean you can, as it is hard to know exactly what other people can do. I do agree that our perspectives shape our realities, and that the perspective we have surely affects our children. My personal opinion is that a lot of families of autistic children are dysfunctional, for whatever reason, and I suspect a lot of parents of autistic children are in some way on the spectrum themselves and may have immature theories of mind. I will talk about that some other day on a different thread.

"These families are not living...Life is lived...in despair."

Good fund raising tactic that has probably raised a lot of money to develop even more tool kits:-) Would I say this in order to raise funds? No,because I am not Suzanne Wright, but I might use a similar tactic. I have talked a lot about playing the autism card, and recently I have noticed myself playing the "old age card" to get certain things for myself, and I am actually really feeling this way when I am doing it, but I am not always feeling this way. In fact writing these words is a call to myself for me to stop.

I can promise you that if that is what is running through any person's head...whether they are parents with NT children, parents with ASD children, people with no children, or...ANYBODY, life will seem like an insurmountable challenge. Anyone with that theme running through their head will find themselves having difficulty coping, feeling depressed, and feeling overwhelmed.

I don't think its always like this. Yes, these negative themes can take over (like demons:-) but it seems to me you are turning a sometime thing into a constant, perhaps, and also you really do not know what it is like for an individual parent. I feel you are discounting their experience much in the same way Suzanne Wright is generalizing the experience of all of these parents.

My children are part of the "3 million" and I couldn't disagree with that whole vile post more. Were there times when my children were younger and more impaired where I laid in bed and cried because I didn't know what I was going to do? Yes. Were their times when my son's sensory seeking behavior left me so exhausted, emotionally and physically, that I worried if I would be able to keep it up? Yes. Were there times before my daughter was verbal where I felt nervous apprehension in the pit of my stomach when I imagined what her future would be like, particularly being an "older" parent and worried she would be left on her own when I died? Yes.

But even in those moments, I was not living my life in despair. Even in those moments, I did not view my children as burdens, or "missing" or "stolen" or any of the rhetoric that is often tossed about.

Yeah, and I do not think all of these in Autism Speak do either. It seems to me it is more a matter of Suzanne Wright and her own (very successful) way of fund raising. By the way, I do not think this fund raising rhetoric is really that much affecting how the American public looks at autistic people, as a lot of this stuff goes in one ear and out the other, but I would like to go into this in more detail in the future, as I know many here do not see it that way. I think all the work they are doing in a positive direction way overrides a few comments made in fund raising, though I can see why some autistic people are objecting.

...so now I am rethinking my earlier post when I said that I think they should change their name to "Parents of Autistics United." That would not work, either. Because they do not represent me, and I would rather not have the entire nation look at me and my family as people who need to be pitied and who live a life of despair.

Well, fine, but I assume you do realize that they would not have changed their name anyway, whether you changed your opinion or not. I think this is important to realize and may even be a key point. We can change our own thinking, though, yes.

That may be their reality. But it is not mine. Because I choose it not to be.

Good, Same here.

I have said before to people who know me that my attitude would probably be different if my children were more impaired. Without exception, I have been told that others are certain it wouldn't.

Sounds like you are letting others second guess how you would be.I mo they don't know and you don't know, either, but also, re what I just said about you and them not knowing---maybe I don't know. In any case, different people when they were children have been conditioned in different ways by different factors that cause them to have different kinds of life views.

People who know me say that no matter what I am handed by life, I will always find a way to stay positive and focus on the good. To find a way to continue to live a life worth living. I don't know if that is true, of course, because I have only been handed the cards I have been handed. But I'd like to think that no matter what, I'd never identify with the above referenced post from Autism Speaks.

It looks to me like they are doing a lot of positive things to help autistic that involves a lot of love and positive and practical thinking. I think some people are looking too much in the direction of the rhetoric and this is a form of seeing the glass as half empty.

Verging on starting to rant, so I shall sign off now