update on my possible ASD toddler - I don't even know what to think...

[Tiramisu]

It is by weighing others' perspective against my own that I have become very clear about where I stand. Some people ask questions or have discussions. I prefer to read. It gives me time to reflect. It is through discussion and books that I am trying to help my boys find their own voice.

 

I was just thinking the same thing. I think from reading different perspectives, even extreme ones, and reflecting on them, always brings me back to a comfortable middle ground. But of course, other people may not agree about my middle ground being middle ground. Oh well!

[Guest]

I was just thinking the same thing. I think from reading different perspectives, even extreme ones, and reflecting on them, always brings me back to a comfortable middle ground. But of course, other people may not agree about my middle ground being middle ground. Oh well!

It makes no difference what others think. Only those that matter ;)

 

I don't worry too much about where I fall on the extreme scale, but yes, I find myself in the middle quite often too.

 

Another thing to keep in mind also is that people arrive at their perspective in different ways and at different times in their life this may change. Let's take Amethyst for example. She is obviously extremely high on the autism scale, so to arrive at the decision that nothing should be done about certain autistic behaviors and autistic kids should be left to stim whenever they want to, will come easy. Also, with time, if she has a family and has a child on the spectrum, her views may change. Perspectives can change with age and a change in circumstances.

 

Note, I am not trying to pick on Amethyst. She has the right to her own opinion. I respect others' right to it. I do quickly lose that respect though if they try to force their perspective on others or shame others into it.

 

Anyway, rambling now ;)

Edited December 29, 2015 by Guest

[Crimson Wife]

Note, I am not trying to pick on Amethyst. She has the right to her own opinion. I respect others' right to it. I do quickly lose that respect though if they try to force their perspective on others or shame others into it.

 

The "yay, autism!" crowd has the right to their own opinions but they do NOT have the right to be an obstacle in the search for better treatments and possibly even a cure. They have the prerogative to reject treatments for themselves if they so desire. It is infuriating to me when they claim to speak for anyone other than themselves as individuals and use language to describe my daughter that I find as offensive as I would find the terms "cancerish" or "Multiple Sclerotic". Autism is a medical condition that my daughter HAS, not something that she IS.

[Guest]

The "yay, autism!" crowd has the right to their own opinions but they do NOT have the right to be an obstacle in the search for better treatments and possibly even a cure. They have the prerogative to reject treatments for themselves if they so desire. It is infuriating to me when they claim to speak for anyone other than themselves as individuals and use language to describe my daughter that I find as offensive as I would find the terms "cancerish" or "Multiple Sclerotic". Autism is a medical condition that my daughter HAS, not something that she IS.

Crimson Wife, I totally agree with you that freedom of speech should not be defined by some as the freedom to affect the rights of others.

 

As for the autism thing, I view it a bit differently. It does not define my boys but it is a part of who they are. Just like being left handed (to use geodob's example). When there are differences in the wiring of the brain, it is very difficult to talk about a cure, unless we are talking about some form of brain surgery in the early stages or manipulating the genes before pregnancy. Finding methods of treating some of the debilitating effects of autism? I can see that as a possibility. That does not make it a cure though.

[Tiramisu]

The "yay, autism!" crowd has the right to their own opinions but they do NOT have the right to be an obstacle in the search for better treatments and possibly even a cure. They have the prerogative to reject treatments for themselves if they so desire. It is infuriating to me when they claim to speak for anyone other than themselves as individuals and use language to describe my daughter that I find as offensive as I would find the terms "cancerish" or "Multiple Sclerotic". Autism is a medical condition that my daughter HAS, not something that she IS.

 

The point that I've heard Amethyst make in her videos is that until recently, the ones speaking on behalf of people on the spectrum are those who aren't on the spectrum themselves, and that we should hear what people are actually on the spectrum have to say. It's interesting for me to hear that perspective. I have to admit, when she describes things, like spd or burnout, for example, in the first person, it's something I can directly relate to. Because I've felt it, I can say it's different and captures it better than when it's written or talked about from a third person perspective. It can imagine it might be helpful for a parent of a child with ASD to hear that. I wish I had been able to get that information when my dd's were younger and no one seemed to have a name for spd, even the pediatrician.

 

According to what I once heard on one of her videos, the term autistic is the one that's preferred by is the community because it's less cumbersome. I have no idea if that's really true for the majority. I'm curious if anyone of heard of this from another source?

 

This conversation makes me remember a heated thread from years ago with Cindy (is that right?) who seemed to promote letting different learners be themselves and appeared initially to be anti-therapy. There was so much miscommunication and disagreement in that thread, and it led to people leaving the boards.

Edited December 29, 2015 by Tiramisu

[Guest]

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Edited August 11, 2017 by Guest

[Tiramisu]

I hope my comment didn't seem like this thread was turning out the way of the other. It's not. It just shows we all have strong feelings about some of these issues, and it makes sense because it's about our kids who we love more than anything and want the best for.

 

And seriously, since that old thread, we have all been through so much, haven't we?!! I can't remember a clear timeline but I'm very sure a few of us are dealing with dxs in our kids that we didn't have at that time. Dx's we may not have imagined a few years ago.

 

The last year has been a whirlwind, staring with a tumor finding in a kid last January that turned out to be a cyst, but we didn't know for six months. Two other kids now have to be watched by a cardiologist. Losing my grandfather. Then there's the np eval we just went through. I hope 2016 is a little more peaceful. But God has shown me that through it all, He's got it under control. And I'm so thankful that my 13 yo dd is hsing again and happy.

[Guest]

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Edited August 11, 2017 by Guest

[Lecka]

It might not be the same one, but I had a big miscommunication with someone a couple of years ago, who was using the "right-brained" and "VSL" language.

 

That language all means one thing when somebody is using it in a "dyslexia" kind of way. It means really different things when people are using it in an "autism" kind of way.

 

I think that the kind of "no need to stress your kid out, be patient" kind of language makes so much sense wrt to autism, and it makes so little sense when people are just looking for an answer to the question of "should I be concerned about my child not making progress in reading."

 

I think on an Internet site the terms are so broad as to be useless, and lead to miscommunication.

 

That is not the same as thinking there is no value in "right-brained" or "VSL" strategies or insights.

 

But when the usage is so broad that it will encompass every person who does not have a traditional learning style, I don't find it helpful.

 

It is a code that means different things to different people.

 

I have found the same thing with labels for parts of the autism spectrum. In person, I think they are helpful. On the Internet, they are so broad that they are not helpful, b/c one person is using a term to mean one thing, and another person is using a term to mean something else. So I think they are helpful, but they are just not good short-hands to be able to use on the Internet to communicate.

 

If we knew each others' children in real life, I think they would be helpful.

 

That is my experience. If I am around a child a bit, and also have a short explanation with some short-hands, I feel like "got it." I don't feel like that with the Internet.

 

I am also, honestly, not looking for kids to have very much in common anymore. The first year I really wanted to meet somebody "like my son." I haven't. I meet kids who have one thing in common, and I meet other kids who have something else in common. But what I *want* is to have there be some child who is enough like my son that there is a *predictive possibility* for me to say "okay, that kid is doing this, after this amount of time," and at this point, I do not think that is something I am going to find.

 

And, the biggest thing I have found out, is not to look at any one sign, and think it means overly much. A lot of traits may or may not be related to other traits. You can't say "oh, this trait is at this level, that implies these other traits are at these levels" too much. It really does take either getting to know people, or talking to their parents. There is really no short-cut where you can just look at a kid and see some obvious signs, or else just know a diagnosis. It just does not work that way, for the thing I am looking for, and what I am looking for is "the power of prediction."

 

At this point -- I don't think there is a power of prediction for me, and so I am much less concerned with trying to parse out differences.

 

It turns out that was my only reason, I think (at this point).

 

There is just no way to account for some kids having different profiles of strengths and weaknesses, and no way to account for kids having the same amount or type of therapy, and one kid makes a lot of progress in one area, while another kid makes a lot of progress in another area.

 

I still ask about things, and find it useful, but I am not looking for "the answer" or thinking that b/c another child made a lot of progress in a certain area by doing x, then if I do x, my son will have the same outcome in the same time frame.

 

It just does not work that way, in my experience.

Edited December 31, 2015 by Lecka

[Guest]

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Edited August 11, 2017 by Guest

[Lecka]

Oh, I am looking for information plus some shared experience of parenting.

 

It does matter to me when I find out or figure out later, that some miscommunication is caused by people who are using a terminology in a different way. It is frustrating.

 

It effects the quality of the information I get, too. It means I have to filter it sometimes.

 

This is hardly my only source of information, but it is a valuable one, especially for hearing about things.

Edited December 31, 2015 by Lecka

[Guest]

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Edited August 11, 2017 by Guest

[Guest]

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[Guest]

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