Telling people about our son having AS

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annie2
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25 May 2008, 5:48 pm

Hi. I'm the mother of an 8 yr old boy, diagnosed with Aspergers two years ago. To this point we have kept the diagnosis confidential between a few family friends and relatives, and his teachers at school. Much of this was because he was so "borderline" and high-functioning and we decided to work on strategies to help him cope and avoid labels.

Lately he has had more autistic episodes at school, and his differences are becoming more obvious. The kids in his class can tell that he's different (eg. social difficulties, zoning out on the mat, fllinging his arms around in a meltdown) , but haven't been told why. We are now tossing up whether to disclose more info and are considering allowing the teacher to explain that his brain works differently along with the strengths (numbers, memory etc.) and areas he needs more help. I am 50/50 about the "Aspergers" word being used, and not keen at all on "autism" being used at this stage, just because I think that people in general don't know enough about the spectrum eg. if child goes home and tells parent that my son has autism, then I think parent will automatically get picture in their head of a worse-case-scenario. If parents are curious, I would prefer to have the opportunity to explain to them what the spectrum involves. We live in an area which I would say is accepting of disabilities and differences.

Anyway, I am posting this here because I am interested in what other people think about it. I have always wanted to make the right decisions in the interest of my son. It is difficult to know what the right thing is to do, especially when I read so many conflicting opinions on here about disclosure.



jamescampbell
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25 May 2008, 6:25 pm

I think it would be quite safe in an area such as yours.

but what i really think is the younger you teach people about autism the better. for example:

a person who's hasn't been taught what it is till when their 25 will porberly think it's strange and sould be cured and won't undertand it.

but if their were taught it when they were younger they had more time to grow to accept it.

you could always trytelling a few people, if nothing bad happerns tell a few more.



krex
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25 May 2008, 6:53 pm

Tell the teacher if they seem like an intelligent person but some could use it against him...blaming all his upsets on the AS instead of something they maybe doing wrong? I would beg you not to tell the other kids. They alreay know something is different and are probably not going to have the intellectual understanding necessary to understand it and are just going to either baby and talk down to him or call him names...really not a good idea. A better plan would be for the teacher to watch for any bullying and call the students on that dysfunctional behavior....seems to cause more problems in society then a little hand flapping(if you ask me...and you did :wink: )

Also, if his behavior has become more "aspie" you might want to find out why...what physical or emotional things might be causing it....changes lately?


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Mikomi
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25 May 2008, 10:45 pm

There's a difference between labels and functional diagnoses. Diagnoses exist for a reason, and in this case I think it can be used to your son's benefit. I wish you luck, I know school can be rough at this age for an aspie (been there).


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sinsboldly
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25 May 2008, 10:52 pm

Mikomi wrote:
There's a difference between labels and functional diagnoses. Diagnoses exist for a reason, and in this case I think it can be used to your son's benefit. I wish you luck, I know school can be rough at this age for an aspie (been there).


pardon me for going a bit off topic, but this is very interesting to me, Mikomi. What is the reason diagnoses exist? I missed that.

Merle



annie2
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26 May 2008, 1:49 am

sinsboldly wrote:
Mikomi wrote:
There's a difference between labels and functional diagnoses. Diagnoses exist for a reason, and in this case I think it can be used to your son's benefit. I wish you luck, I know school can be rough at this age for an aspie (been there).


pardon me for going a bit off topic, but this is very interesting to me, Mikomi. What is the reason diagnoses exist? I missed that.

Merle


I think what Mikomi is getting at is that diagnoses hopefully lead to help and improvements, once you know what you are dealing with. I think she means that letting other children know the reasons for my son's behaviour, will help them to understand and possibly even help and support him. I am inclined to think (and hope!) she is right.



craola
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26 May 2008, 2:22 pm

I think its good for diagnoses to be used with children, not just so that your son finds things easier but so that the rest of the children grow up with an understanding. It really does help in both cases so much.

For example when I was young children with any differences were kept out of primary schools which led to them having trouble when they grew up and other kids not having a clue about it.

In the same school there are now three Aspies a child with Cerebral Palsy and all sorts of learning disorders, the children just get on with it, they know they are special but it makes no difference to them, they just grow up knowing that not everyone is the same.

Of course not everything is so black and white when its your own son, my mums a teacher at my old school and they are getting more and more Aspergers friendly all the time, they have just bought all the books I have because of a new child coming in. Its best to start getting help at Primary School if you're going to because they can help with transitions etc.

Other children won't see it as this huge thing you do most probably, they just don't think like that.



annie2
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26 May 2008, 7:23 pm

craola wrote:
Other children won't see it as this huge thing you do most probably, they just don't think like that.


Oh, thanks. I think I really needed to have that point made because, you're right, it is a big issue for me, and so I probably think that everyone at school is analysing and looking at my son ALL the time, when probably to everyone else he is just like another fish in the pond that draws a bit of attention every now and then.

I am about to talk with his teacher this afternoon about her giving some information to the class, so this post was perfect timing in giving me some reassurance that I'm doing the right thing.



gbollard
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28 May 2008, 1:21 am

It's always been my belief that you can either....

not have a label and have people make up awful names about you instead...

or

have a label with a good description next to it and educate people.


I know which I'd prefer.



krex
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28 May 2008, 1:44 am

Well...go ahead and see how much those other 8 year olds have with the label ass bergers. If you think a label is not going to put an open target on your son, then you have forgotten what school can be like. I haven't and I am reasserting my original comment. Tell the teacher and don't let her tell other other students just have her call them on any exclussion or bullying of your son.

You could try heading this..."Aspies...did you get bullied less when people learned that you had aspergers in grade school ?"


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annie2
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28 May 2008, 2:06 am

Actually, the kids at school got told today. I don't think the Aspergers word was mentioned at all (and we had specifically requested no mention of autism since most people don't understand the spectrum). They just explained that his brain works a bit differently and finds it hard to process things sometimes and he needs some time to settle down. They also said that his brain worked better at some things, and the kids immediately identified these themselves - maths, spelling etc. It is a school that works hard at having an accepting environment towards disabilities and I am reasonably confident that we've made the right decision. Thanks for all your feedback - whether for or against. It helped me process the situation.



SotiCoto
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28 May 2008, 3:04 am

It isn't something to be kept a secret.
It is something to be proud of.... but you're still treating it like it is some sort of disease with actual "symptoms".

It isn't a "disability". Disabilities don't make people better.
Being Aspergian does.


It is probably worth remembering that.



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28 May 2008, 3:28 am

I like how it is for me: It's being shared on a need-to-know basis, mostly dictated by the person it affects; Myself.

It's easy to say something, but it's impossible to unsay it. Once you "out" yourself, you're out. Out for any pity that you don't want, out for the prejudices and stereotypes, out for everything that comes with Aspergers. People assume things about you, based on your diagnosis. You're not yourself anymore; You're a diagnosis.
It's not a pleasant experience; Trust me.

I consider having AS a private, personal issue.


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