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Waterfalls
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13 Jun 2014, 11:06 am

I thought about posting this in the General Discussion, but this seemed more appropriate. I will preface by saying I am an Aspie, so to manage in the world I need to pay attention to social expectations and try not to violate them too deeply.

My daughter was diagnosed years ago with Aspergers. Just recently, I took her to a psychologist who was initially kind of iffy and wondering about other things and then suddenly telling me would sign off on ASD diagnosis for her though may involve getting a developmental history. Again. Prospect of going through that feels a bit overwhelming.

I am more so overwhelmed by all the seeming expectations and strange demands and sometimes hidden expectations and agendas. The psychologist is fine, but considered alternatives and told me he couldn't rule out ASD. Now tells me ASD is the appropriate diagnosis, suddenly it's as if she has just been diagnosed again for the first time. I don't even think this is bad, but I see that It seems I am supposed to think it is bad.

To top things off, special ed teacher is talking in a similar way about accommodations for LD sister. And it seems like I am expected to take a positive attitude but that they are both in terrible straits. I am not feeling very positive confronted with the mournful way I am being told things. But the mere fact of ASD or LD does not to me seem to need to be mourned, especially given both children were identified years ago, there is no new bad news other than if people thought it would disappear?

Can anyone explain? I don't understand my reacting with so much upset as if this is the first time, and I don't understand why professionals are acting like this is the end of the world but I should stay positive. Rationally, logically, this is not the end of the world and they are great kids is my perspective, but does not seem I am supposed to see things this way.

What am I to do what is going on or what to do?



ASDMommyASDKid
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13 Jun 2014, 11:20 am

I am an undiagnosed aspie so my read may not be as good as that of an NT, but I will try.

The expected reaction is that you will be out of your mind with grief. This is how most NTs without a neurodiversity background would act. So they tell the parent to stay positive as a counter balance, but they still want the parent to understand the severity. It would be like if your child were diagnosed with a severe medical condition --They expect grief and sadness, want to balance it out and soften it a little, but still have the person understand it is serious. Also they don't really want to deal with a blubbering, sad person.

If you act too sad and depressed it is awkward and difficult to deal with. If you are too pragmatic and logical, it makes it seem you do not understand or are an aloof, robotic person. There is some balance they expect/are hoping for. I am not sure what it looks like, but that is how it seems to me.

Edited for syntax.



Ann2011
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13 Jun 2014, 11:55 am

It depends on who you are dealing with and their agenda. I have been diagnosed by a psychiatrist, but there's nothing to say another couldn't disagree. (I am waiting to see a new specialist and have no idea what to expect.)
But even with the diagnosis, school can't really accomodate autistics because it is intrinsically antithetical to us. Gathering in groups, learning through socialization, learning following rigid structure. Its not a conducive learning environment.
Having said this, they need an education - if you can afford to home school or to pay for a school appropriate to their needs go for it! If not, I don't know. But you are not to blame. It is flawed system.

It is disturbing how people get so upset and weird about the diagnosis.



Waterfalls
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13 Jun 2014, 1:52 pm

ASDMommyASDKid wrote:
I am an undiagnosed aspie so my read may not be as good as that of an NT, but I will try.

The expected reaction is that you will be out of your mind with grief. This is how most NTs without a neurodiversity background would act. So they tell the parent to stay positive as a counter balance, but they still want the parent to understand the severity. It would be like if your child were diagnosed with a severe medical condition --They expect grief and sadness, want to balance it out and soften it a little, but still have the person understand it is serious. Also they don't really want to deal with a blubbering, sad person.

If you act too sad and depressed it is awkward and difficult to deal with. If you are too pragmatic and logical, it makes it seem you do not understand or are an aloof, robotic person. There is some balance they expect/are hoping for. I am not sure what it looks like, but that is how it seems to me.

Edited for syntax.

That's it exactly I think. How do you respond to these confusing expectation while staying socially acceptable without becoming overwhelmed?



ASDMommyASDKid
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13 Jun 2014, 2:23 pm

Waterfalls wrote:
ASDMommyASDKid wrote:
I am an undiagnosed aspie so my read may not be as good as that of an NT, but I will try.

The expected reaction is that you will be out of your mind with grief. This is how most NTs without a neurodiversity background would act. So they tell the parent to stay positive as a counter balance, but they still want the parent to understand the severity. It would be like if your child were diagnosed with a severe medical condition --They expect grief and sadness, want to balance it out and soften it a little, but still have the person understand it is serious. Also they don't really want to deal with a blubbering, sad person.

If you act too sad and depressed it is awkward and difficult to deal with. If you are too pragmatic and logical, it makes it seem you do not understand or are an aloof, robotic person. There is some balance they expect/are hoping for. I am not sure what it looks like, but that is how it seems to me.

Edited for syntax.

That's it exactly I think. How do you respond to these confusing expectation while staying socially acceptable without becoming overwhelmed?


Honestly, really badly, I try to make serious and concerned faces. My default would be to make my absorbing info and analyzing information face, which is apparently not OK.

One time I got emotional during an IEP meeting where my son's first grade teacher was trying to emphasize how much my son stood out and how awful it was and how I did not want for -that- to continue. (She was always trying to get me to convince the district to create an autism only class--so she would not have to deal with him. She was really awful.)

Anyway, one of the other members of the IEP committee later told me how nice it was that I cared and got emotional. WTF!! ! I mean she meant well, but really I was embarrassed and not at all proud of myself, but evidently they had been waiting for adequate emotion from me.

So, I am probably not going to be much help. I can tell when I am not responding "appropriately" b/c I have enough NTish skills to read the signals; but not enough to respond in the expected way.



Waterfalls
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13 Jun 2014, 3:09 pm

ASDMommyASDKid wrote:
evidently they had been waiting for adequate emotion from me

Maybe that's the problem. I'm trying so hard to do things the way I'm supposed to and seems like they expect me to be calm and positive. Which they do, except when they don't, and then I don't show "adequate" emotion in ways they understand. The ground shifting under my feet like this is terribly distressing, as is making serious and concerned facial expressions when my kids are doing well. But it makes sense to me to try what you do making serious and concerned expressions. If I can figure out how to manage this. Seems like a lie when kids are doing well, so I'd love to read ideas how to make the serous and concerned expressions.



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13 Jun 2014, 3:46 pm

I have done both things (blubbered helplessly and become nonverbal and acted robotic) Neither got a good reaction. We have a much better situation and a much better team now, and I'm pretty much able to be myself with them with no trouble.

Here's my take: be honest. Explain that you understand the seriousness of the situation, and if they prod you, just say "I understand; it can be a lot to process but I will be fine. I'm the kind of person who prefers to deal with emotional things in private." (Or, if they're pushing you for emotion after that, say "don't worry, I have trusted support people that will help me." which hopefully you do...well, and there's us...)

That gives them an indication that you're not a robot but that you understood.

Sometimes it doesn't help to explain everything, just offer a reasonable explanation that isn't a lie, and stop there.



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13 Jun 2014, 6:06 pm

I have worked so hard to control my emotions and to act as calm and positive with school staff as I can. Thought that's what they wanted. Makes so much sense what you all are saying!



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13 Jun 2014, 6:25 pm

I think MomSparky's response is good.

You should not have to fake or modulate your reactions in order to please a school team, or to get what you need for your children. This isn't about you, it is about the kids.

Sometimes just saying upfront "I know I respond oddly at times to what are emotional issues, but be assured that I am listening and absorbing and care very much about doing what is right for my children" can prevent misunderstandings.

That said, I can be all over the map in meetings and I think my ASD husband has felt a little embarrassed about it at times - but I get us the results we need so I guess he's over it ;)


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Waterfalls
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13 Jun 2014, 6:48 pm

DW_a_mom wrote:
I think MomSparky's response is good.

You should not have to fake or modulate your reactions in order to please a school team, or to get what you need for your children.

It's exhausting. I'd love not to always have to watch and modulate how I react.

But isn't it necessary to do this?



momsparky
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13 Jun 2014, 6:54 pm

Waterfalls wrote:
But isn't it necessary to do this?


It depends on the people you're dealing with: if they are likely to be supportive of differences in parents, that's fine - but if not, a little heads-up that they should be putting their focus elsewhere isn't a bad way to go.



Ann2011
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13 Jun 2014, 7:00 pm

Waterfalls wrote:
To top things off, special ed teacher is talking in a similar way about accommodations for LD sister. And it seems like I am expected to take a positive attitude but that they are both in terrible straits. I am not feeling very positive confronted with the mournful way I am being told things. But the mere fact of ASD or LD does not to me seem to need to be mourned, especially given both children were identified years ago, there is no new bad news other than if people thought it would disappear?

Waterfalls wrote:
DW_a_mom wrote:
You should not have to fake or modulate your reactions in order to please a school team, or to get what you need for your children.

It's exhausting. I'd love not to always have to watch and modulate how I react.

But isn't it necessary to do this?

That's a good question. For myself I would say it's not necessary. But when you're protecting your children, it might be different.

It is awful that these beurocrats have so much power over your raising of your children. I think the school system has way too much power in society.



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13 Jun 2014, 7:43 pm

I guess I've felt I needed help to advocate effectively. And everyone has guided me toward modulating my reactions. It seems to work better to look as typical as possible. I guess I'm just whining as it feels overwhelming to always be trying to manage how I come across. Don't really think it fools anyone, more like they are willing to overlook my being different if I follow enough of the social rules. If not, likely they would go back to telling me AS and dyslexia are my fault. And worse yet, I'd believe them if they did.



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13 Jun 2014, 8:15 pm

I must come off as a stone-cold weirdo. My "concentrating" face is a frown. I don't get emotional because being emotional embarrasses me, I'm not being told anything surprising, and I don't think HFA is the end of the world. Also because all my mental energy is on saying normal things and staying relaxed enough that I don't get a headache and go mentally fuzzy.



Ann2011
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13 Jun 2014, 8:20 pm

Waterfalls wrote:
I guess I've felt I needed help to advocate effectively. And everyone has guided me toward modulating my reactions. It seems to work better to look as typical as possible. I guess I'm just whining as it feels overwhelming to always be trying to manage how I come across. Don't really think it fools anyone, more like they are willing to overlook my being different if I follow enough of the social rules. If not, likely they would go back to telling me AS and dyslexia are my fault. And worse yet, I'd believe them if they did.


Don't believe them. They are clueless. I think you're right that the harder you try to appear normal the less you do.

[youtube]http://youtube.com/watch?v=TcJiu4jXfTk[/youtube]

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They probably wouldn't choose that title today.



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13 Jun 2014, 9:42 pm

Waterfalls wrote:
DW_a_mom wrote:
I think MomSparky's response is good.

You should not have to fake or modulate your reactions in order to please a school team, or to get what you need for your children.

It's exhausting. I'd love not to always have to watch and modulate how I react.

But isn't it necessary to do this?


I think that depends on if your doing so is helping or hurting.

I find that me being me (sort of ASD and sort of not) seems to get me what I want. I have no idea how many people may whisper how strange I am behind my back but, overall, the reactions I get when I spin off are sympathetic, and when people are sympathetic they give you what you want.

My husband, however, has the opposite experience. If he spins off he comes across as combative and unreasonable, and people will cut him off. So, he modules and stays even and polite. But he hates it, and pretty much lets me do all the talking, even if he thinks I sometimes really put my foot in it. He gets information and people like and respect him, but he can't get results when the world wants to tell you A but you really need B.

We basically have the situations we think he should handle, and the ones we think I should. Just based on past success rates.

People don't really say no to me, so when we need a yes, it's my baby.


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