Who to tell about son's diagnosis?

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Mom2Michael
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14 Jun 2011, 11:24 am

Our son just turned 9 and was diagnosed with Asperger's. We had suspected something was "off" for awhile so while difficult to hear, it wasn't surprising. I am now wondering who to tell -- we told family and close friends of course but what about parents of his classmates? He goes to a small school and everyone knows everyone else. Some parents already know (since we are friends). Who do you decide to tell? I guess I just want them to know that Michael acts differently some times, but there's a reason for it. He's not being "bad," it's just how he deals with life. I also know he'll be getting extra help at school so in case kids or parents wonder about that??
Thank you!



liloleme
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14 Jun 2011, 5:07 pm

I think we all go through a phase, especially after diagnosis, that we want to explain why to everyone....sort of clear the air. I know when I was diagnosed I wanted to tell everyone I knew because I suffered for so long and I wanted other people to know, finally, why and what I went through. Also with your kids you want to explain to people, even complete strangers who are staring at you because your kid is having a meltdown or just acting odd....."my kids autistic ok?"
Just remember that whoever you tell, sometimes the result may not be what you wanted. Some people have some strange ideas of what autism/asperger's is. Even a lot of medical doctors do not know what aspergers is, they know what autism is and they will look at your son and think you are crazy for thinking he is autistic. So unless you are prepared to completely explain what aspergers is and all your sons issues sometimes its better to keep it quiet unless someone is on a need to know basis....like if you son has issues with another kid, ect. Also other kids can be nasty and sometimes parents are not much better. They may already see that your son is different but if they know he has "autism" they may treat him different or even begin bullying him. That is my advice but I suppose its a completely personal decision that you should base on your life and knowledge of the people around you.



CassandraD
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15 Jun 2011, 4:21 am

I agree with the post above. BUT on the other hand, if you live in such a small town that everybody knows everyone else's business, then perhaps it would be better that YOU tell people so at least you can properly explain it. Maybe make a pros and cons list because only you know the culture of the people who live around you and how accepting or not accepting they are. I just know that if everyone is gonna hear anyway, i would want to be the one to tell them.



annie2
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15 Jun 2011, 5:05 am

We tell people as much info as we think they need to know or would understand. Most parents at school, I just say that our sons a bit different "more academic and less social", whereas some I will say that he has some Aspergers traits. I find it easier to put it that way because it means he doesn't get labelled. Close friends and teachers know his diagnosis and can deal with it. I have found that some people who happen to know his "label", but don't actually know him very well, assume that he is worse than he is. I got asked by someone if he would be in the "special class" at high school to learn life skills, and I'm like thinking, that is so not what he is like - he will be in the gifted class and a walking encyclopedia, but with social issues. The other thing is, that as he has gotten older he has matured and improved in some areas so that in many situations he just seems a bit geeky, rather than coming across as being autistic . . . and people wouldn't really know anyway . . . so they don't really need to. Not that I am trying to hide his autism at all - just trying to make the best decision for what is going to be most helpful to him in life. It's hard though - I often wonder if I'm getting it right. All the best with deciding what to do.



DW_a_mom
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15 Jun 2011, 10:42 am

I tend to simply say, "my son is special needs," because in most conversations that provides enough context. If they ask for more, I can give it. Parents who will be in charge of him for a while may need to know some specifics on sensory needs, protocols for dealing with specific situations, etc., and so I'll share that. My kids don't like me talking about them so that is what pulls me back at times from sharing what I might have otherwise; I'm naturally an open book.

People here have been great about it, and with him, but you don't know until you take those first few baby steps exactly how the information will play out.

It does, btw, go on all summer camp and activity forms. It just isn't fair, IMHO, not to tell people that have to take responsibility for him. They need to know to let him be when he's overloading, for example; that isn't the natural reaction of adults to an upset child, to leave them alone. And they need to know to give warning on transitions, etc.


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Mom to an amazing young adult AS son, plus an also amazing non-AS daughter. Most likely part of the "Broader Autism Phenotype" (some traits).