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leechbabe
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14 Jul 2009, 3:57 pm

Hello :)

My oldest daughter (6yo) started school this year and has been really struggling. We knew something was not right and as her younger sister (4yo) is HFA we started looking at Aspergers.

Yesterday we got to see the Clinical Psychologist and have a formal diagnosis of AS now.

It is such a huge relief, I wrote this to the school principal today

Quote:
I do feel very strongly that this label is not a box to put Annie in and close the lid, we need to use it to her advantage to open doors for her and as I have said (and will keep on saying) the final goal is for Annie to be happy.


my biggest problem now though is this:

Quote:
We have not told Annie as yet, unfortunately the school psychologist who assessed Annie during term made the horrendous mistake of telling Annie 'you do not have Autism' which I now have to factor in when we tell Annie. It is a real problem as Annie has a trap door memory and hates being lied to, once something has been told to her by an adult she trusts, it is concrete and fact and very difficult to convince her otherwise. However Annie does know something is up and realises she is different to the other children, as she says the children in the playground are 'lost' to her. I'm hoping to use all these appointments we have been going to as an opening to begin discussions with Annie and I will keep yourself (school principal) and Classroom teacher appraised of what happens. Perhaps something should be said to the school psychologist so she does not repeat her mistake and cause problems for other families?


The school psychologist is a different person to the clinical psychologist we saw yesterday. Annie knows something is up, she is asking questions and I think would be less anxious if we were able to talk honestly with her rather than keeping secrets.



DW_a_mom
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14 Jul 2009, 4:19 pm

While this forum is pretty comfortable saying that AS is a form of autism, elsewhere the terminology is considered more distinguishing, as in "related to but not being" autism. Perhaps you can use that clarification to help her feel she has not been lied to? I agree, the whole lying thing is really important to many AS because they are so literal. They don't get that the rest of world is as casual with terms as it really is, and don't understand the fine distinctions between misspeaking, overspeaking, and lying, etc. You will need to step carefully in conversations with your daughter so that she doesn't lose trust.


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leechbabe
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14 Jul 2009, 9:31 pm

Thank you DW_a_mom :) I hope we can find a way to work with Annie that doesn't do more harm than good.



caramateo
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15 Jul 2009, 12:12 am

What's wrong with her not trusting some school psychologist?

believe me, she will need to know that not all mental health professionals are to be trusted

not every one can diagnose and treat people on the spectrum and adults also make mistakes.

If I had known that it would've save me a lot of suffering and money.

everyone is different and is better for her to know what's going on, who is she gonna trust then? you mom?



Tracker
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15 Jul 2009, 12:28 am

Tell her that she is half autistic. What the doctor meant is that she isnt fully autistic, and he was right. But he didnt mean that she is completely normal either. More importantly, I wouldnt emphasize the label too much, what I would be more concerned with is teaching her what is important.

For the most part, what you need to focus on is mostly this info:

1. Everybody is unique and has their mind work in a different way. No two people think exactly alike. You think differently then she does, her father thinks differently then you, her sister thinks differently, etc.

2. Nobody's mind is any better or worse then somebody else's mind. Some people may be good at math, some people may have difficulty with it. Some people may be good at talking, others may struggle with it. Since everybody has a different mind, everybody will have their own unique set of skills and challenges. But that doesn't mean that one person's mind is better or another's mind is worse. Everybody is equally valuable, not because of what they can and cannot do well, but because they are all human.

3. Certain people have similar thinking styles. While they are not exactly the same, they do share some things in common. There are some groups of people that think in certain ways, and other groups of people who think in other ways. One group is not better then the others, merely different. It is like cats and dogs. Each and every dog is unique. It has it's own style of fur, its own size, its own unique personality. Likewise, every cat is unique. It has it's own size, and shape, and color pattern that no other cat has. But even though each creature is unique, you can group them into somewhat similar categories. For example, you can determine what is a cat, and what is a dog. This doesn't make them any less unique, these are just very broad categories.

4. Your daughter happens to have a mind that belongs in an rare category. Her minds operates differently then most people's. Like being a cat in an area with a lot of dogs. It isn't a bad mind, just merely different then others. There is nobody who is exactly like her, but there are other people who are similar. Its just that people with her type of mind make up a very small portion of humanity.

5. While there is nothing wrong with being unusual, it can make interacting with other people tricky. Just as a cat and a dog have difficulty understanding each other, so your daughter might have some difficulty understand people with the normal, less rare, minds. Tell her that you can help with this by explaining in some ways how other people think. And that you are available if she has any questions about the normal people.

Make sure that she understands that words like autistic, half autistic, asperger syndrome, etc. are merely just used to try and describe people. They are not predictors of the future, nor do they define who and what a person is. Make sure she knows that you love her no matter what her description is, and that you are happy to help her try and figure out all those weird normal people who happen to make up the bulk of the population.



DW_a_mom
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15 Jul 2009, 12:34 pm

Tracker wrote:
Tell her that she is half autistic. What the doctor meant is that she isnt fully autistic, and he was right. But he didnt mean that she is completely normal either.


Tracker, I'm laughing - you totally have a way with things that I wouldn't think of. I love that suggestion.


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ImMelody
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15 Jul 2009, 1:57 pm

I think I would be very frank in this matter. Explain that she has Asperger's and that it is on the Autism Spectrum. Then use her sister as a kind of slingshot to explain Autism is different from Asperger's. That they are along the same rainbow, they are not exactly the same. And then that would also be a good lead into why her sister was diagnosed much younger. Because they are different.


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leechbabe
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18 Jul 2009, 6:08 am

We talked to Annie today and I think it went pretty well.

She cried for a while and denied she had autism because she could speak.

We read the book 'All Cats Have Aspergers' and Annie related to much of it.

We talked about how it is okay to think differently and how this sometimes makes her smarter (she loves that she is clever/smart).

We talked about how sometimes things are harder for her and that is okay to and she can ask for help and that is okay.

Was an interesting afternoon. Annie was quieter than usual but also happy and engaged.

Now I just need to figure out a solution to her escalating desire to keep barcodes. I was happy for her to collect the barcodes themselves in her special box or in the photo album but now she wants to keep the empty drink bottles instead of removing the label.

I've suggested photographing the bottle with label on it (and barcode), drawing a picture, writing the barcode number down in a special book. But nothing is acceptable.