Sharing/explaining diagnosis/challenges - Mothering Forums
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#1 of 9 Old 08-20-2012, 12:28 PM - Thread Starter
 
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Does anyone have some words of wisdom from helping your child and your friends/family understand your child’s spectrum disorder?

 

My son is 2.5. Last month we received a diagnosis of mild, high-functioning ASD. I haven’t shared this yet with most friends and family, because I want my son to have his own understanding first, and I haven’t figured out how to do that yet. The last thing in the world I want is for him to first become aware of his ASD by hearing someone else talking about it. I really want it to feel as natural to him as always having known that we came together through adoption, but for some reason the pieces aren’t falling into place the same way.

 

So I thought maybe I could just start mentioning – both to him and to friends/family – things like that sometimes he doesn’t like crowds, or he plays a little differently, or transitions can be challenging – because his brain works a little differently than some people’s. But even this seems kind of a lot to put on him, and at the same time feels like too little to give grownups – won’t they start asking for more detail? For a diagnosis? So maybe I should just mention the diagnosis instead – but people have such preconceived ideas about ASD, many of which don't apply to him, and I want them to keep interacting with him as he is, not with a label. Also, what if the diagnosis changes down the road and then everyone, himself included, already has him in that box?

 

It isn’t something that comes up very frequently on its own because his ASD is very subtle; no one has ever mentioned a concern to me or even looked at us funny. But it is very much present in our daily life, and I’m feeling the need to do some sharing for my own mental health – for close friends to understand why I am so drained sometimes, or seem overly focused on, or accommodating of, him.

 

My son is very verbal - I think he will have some real understanding of whatever I tell him.

 

Many thanks in advance!

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#2 of 9 Old 08-20-2012, 02:47 PM
 
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I think there are some picture books about autism - maybe that would be a good way to talk to him about it?  I remember when I told family about the diagnosis and ended up feeling hurt, as they did not seem to believe it.  Looking back, I realize they did care but it is a grieving process for them as well (especially the grandparents), and takes some time for them to accept.  So when you tell people, try to prepare yourself for less than sensitive responses, and seek out other parents with similar kids, they will probably be the easiest to talk to.
 

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#3 of 9 Old 08-20-2012, 04:57 PM
 
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I think it is ok to pick and choose who to tell. For your own support, telling a close friend or two who you know can be there for you, instead of making it about them, might really help. Let them know that this isn't public information and that you trust them to keep it in confidence.

But let your close friends love on you and support you and listen to you.

My mother and sister responded so badly that I would caution others to tell some people in their lives when they feel strong, not when they need support. Anyone in your life who is self absorbed, loves drama, or is all about status can wait until you feel really centered and peaceful about the situation.

but everything has pros and cons  shrug.gif

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#4 of 9 Old 08-25-2012, 10:55 AM - Thread Starter
 
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Thanks to you both. Rainbringer, do you know of any picture books in particular? When I searched almost everything that came up was books for siblings or friends of kids with autism, not for kids on the spectrum themselves.

 

I did a little experiment this morning when I was telling him we were going to some friends' house this afternoon. He said he wanted to play with their trucks and I said I was looking forward to talking with the friends, and then mentioned something about how those preferences are related to the fact that our brains work a little differently from each other. I didn't get much reaction. But maybe it will work to begin dropping it in casually like that.

 

Still not sure about telling grownups. Before the diagnosis, when I'd mention my concerns, they were dismissed across the board. People really have an image in mind of what the spectrum means (I use to have those assumptions too), and I don't always want to be in educator mode about it...
 

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#5 of 9 Old 08-25-2012, 12:10 PM
 
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Originally Posted by baltmom View Post
Still not sure about telling grownups. Before the diagnosis, when I'd mention my concerns, they were dismissed across the board. People really have an image in mind of what the spectrum means (I use to have those assumptions too), and I don't always want to be in educator mode about it...

 

 

I understand. My kids now attend an alternative school and there are a lot of kids with different quirks, and it's nice for me to be where the other moms tend to be a little more clued in.

 

I think sometimes people are trying to be *reassuring* and miss and become *dismissive.*  I think often it is done in an attempt to be helpful, even though it doesn't work out that way.

 

Have you read the book "Quirky Kids" by Klass yet? My DD's dx has varied over the years from PDD-NOS to Aspergers, and I really like this book.  It's a great place to start reading about the higher end of the spectrum.


but everything has pros and cons  shrug.gif

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#6 of 9 Old 08-25-2012, 02:41 PM
 
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Two children's books that I thought were decent were "Understanding Sam and Asperger Syndrome" and "The Red Beast: Controlling Anger in Children with Asperger's Syndrome." One challenge is that no book really describes a given child because ASD manifests so differently in different kids. We would sometimes talk about how DS was the same and different than the characters in the books.

 

I think I overshared for a while and now I am much more cautious -- my son is also very subtly affected at this point, so it doesn't come up so often in casual company.

 

And, yes! I agree with Linda on schools with lots of quirky kids. So helpful to not have to explain. I have a quirky NT kid, too, and a not-so-quirky NT kid and it's so nice when you can find places they all fit in!
 

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#7 of 9 Old 08-26-2012, 05:01 AM - Thread Starter
 
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I think sometimes people are trying to be *reassuring* and miss and become *dismissive.*  I think often it is done in an attempt to be helpful, even though it doesn't work out that way.

 

Yes, the intention has definitely been reassurance and support! And because everyone wants to be so supportive, they really do want to understand how it is possible that he is on the spectrum. Which requires lots of explanation, and shifting of previously held beliefs. All of which I find interesting, just sometimes a lot to cover. So yes, I love the idea of being around families who just get it. I haven't really found that community yet in real life - only here smile.gif

 

Thanks for the book recommendations. I haven't read Quirky Kids yet, but maybe that will help other folks in our life too, like grandparents. And I really like the idea of talking with him about how he is and isn't like the characters in the kids' books. I'm going to look for those books now.

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#8 of 9 Old 08-26-2012, 06:28 PM
 
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I learned quick not to really share with people.  They definitely have a preconceived notion of what is and is not ASD.  Our journey started when mine was under 1yo (and at that point, it wasn't an ASD dx but it doesn't matter what the label is--people react similarly).  My son is now 8-1/2 and we've been through the spectrum landing at Asperger's.

 

I honestly think that it is only now that my son is understanding that he is different and I honestly have never had reason to bring it up to him otherwise.  When there was an issue because of the differences, we dealt with the issue with my son but it was usually in the form of "some kids don't like to play that" or "we need to take turns" or things like that.  There was really never much occasion to explain to my son that his brain works differently until just recently... when we introduced the idea of Asperger's Syndrome to him.

 

For other people, there really just was no reason to bring it up.  My kid was different.  In retrospect, it didn't really matter that they knew or didn't, right?  I mean, what would it change?  The people that wanted to really be with me would manage around my son's little things here or there... a tantrum, the need for us to leave on occasion, etc.  But really, why did they need to know? They didn't.  *I* needed them to know because I was back-handedly looking for support (I'm not saying that's your sitch, but I would look at why you feel they need to know).  Knowing didn't cut us any slack.  Either my son's behavior was tolerable or it wasn't.  He could be a challenging or high strung kid without the dx... kwim?

 

And as my son is now older, I also learned (the hard way) not to tell his teachers more than they need to know.  He is homeschooled, but participates in classes with public-schooled kids (enrichment classes on Saturdays, swim lessons, Scouts, etc.).  Too often we had the experience of someone knowing his dx and LOOKING for problems with him.  Another mother with a child similar to my ds but a few years older told me "If there's a problem, guaranteed they will let you know" and she was absolutely right.  So while I definitely tell them about specific challenges that need to be accommodated (he has really bad fine motor problems and doesn't write well; and is prone to being bullied because he is kind of naive), I generally don't mention his dx or quirkiness.  I mention the stuff that the teacher MUST accommodate... kwim?  I really hope that doesn't start a war.  I was a teacher and have additional grad credits in SpEd so I know the idea of NOT giving the teacher the dx is a contentious topic.


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#9 of 9 Old 08-28-2012, 07:23 AM - Thread Starter
 
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Thanks. I started out over-sharing too (our journey started when he was a newborn), out of a desire to protect others from the embarrassment of wondering if they should mention anything to me, because it seemed so obvious to me that something was different. As it turned out, it wasn't obvious to anyone else, and still isn't.

 

I feel very upfront and not backhanded at all that this is mostly about support for me. It's just the two of us, and he needs me to be the very best mom I can be, and to do that I need to be able to bounce things off people and share updates and observations - just feel like we have some company and understanding in our journey. In the last few days I have been saying, in context, things like we don't always do well in closed areas, or that we're very passionate about trucks, and that's been accepted easily and also feels validating of who he is.
 

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