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*ed. note ~ It is very tempting to editorialize what you are about to read with my own spin. But, I am (I think) restraining myself here. Since Charlie is voicing his own opinions my hope is to let his words stand alone instead.
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It’s been a long week, with The Professor out of town yet again, a middle of the night trip to the emergency room for an infection in Tommy’s arm, and ever increasing anxiety for Charlie over the school year ending. So, tonight I ordered a pizza and turned on the t.v. because I didn’t have it in me to do more.
The boys were watching Nova Science Now (it’s one of Charlie’s favorite shows) and I was zoning out with a book nearby. I often have to keep an eye on the Nova programs as they are meant for adult consumption, they can, on occasion, veer into inappropriate territory. But, tonight was just pieces on a telescope followed by a story of a woman who studied spiders.
Because I was so tired and because it’s such familiar subject matter, I didn’t connect the dots at first when I started hearing the narrator say: “Autism is a devastating brain disorder effecting 1 in 150 children. But, if there is a sibling diagnosed with autism rates skyrocket to a 1 in 5 chance of the diagnosis being shared.”
When it finally clicked for me that the topic had switched to research on autism and it was being presented in the manner research on autism always is I jumped up and paused the show. I looked at Charlie and the look of utter sadness on his face reached straight into me. I went to him and curled him in my lap.
Do you want to talk about the things you just heard, my love?
Long pause of silence. I think so. At this his voice trembles and he begins to cry.
They said it was only 1 in 5. So, that means even if I have 5 kids only 1 of them might have Asperger’s.
I was taken aback by this. It wasn’t what I was expecting him to be upset about.
Charlie, are you saying you are feeling sad because if you have kids they might not have Asperger’s?
Yes.
Is that what you want? For them to have Asperger’s?
Yes, because then there will be more people like me. No one ever has Asperger’s like me, mom.
He’s had his suspicions about a few kids at school this year, but when he has asked them they haven’t known what he was talking about. I halfheartedly name a few kids from his integrated preschool last year. But, I know they aren’t who he means.
They don’t have the same autism like me. It doesn’t seem the same. I think maybe it’s because I am Asperger’s. Nobody ever has Aspberger’s. I wish they did.
There are so many people in the world like you, Charlie. Lots of people.
Where are they? I think I’m done talking now, mom. I wish those people that have Asperger’s went to my school.
He wanders off, having said this, and begins doing one of his math workbooks.
Related articles
- Autism Awareness – five year old style (outrunningthestorm.wordpress.com)
- You can’t be what you can’t see – world autism acceptance day (outrunningthestorm.wordpress.com)
Oh Charlie, I understand this feeling completely. I wish there were more people like me in my daily life. Knowing they exist doesn’t help, not really. Maybe its time to find an AS support group near you?
yeah, I’m going to need to find something. Our problem has always been his age. He is too young for any of the social, non-therapy, activities that are organized around here. There are other kids like him, of course, but either their parents have not told them yet, so I can’t tell Charlie, or they just haven’t been diagnosed yet because they haven’t needed it. But, I was not aware he felt so isolated previously.
Sounds just like my Joe! I wish I could find someone close to us that as “like” him. He is 6.5
yes, I look forward to the day when he can find virtual support on the internet the way we all do!
Bless his heart….I hope he can find some kids who are similar to him at a support group or social skills group.
yeah, I’m gonna step up the effort to do more searching foe sure.
Maybe it would help to ask Charlie what his ideal playmate would like to do. Because I think he may find that it is not necessarily Aspergers that he is looking for. He is most likely simply looking for someone to be understanding and who can share his own interests. All of us, no matter our age or our “labels”, just want to share our experiences and our interests with like minds. I’d just hate for him to feel that just because someone is not blessed to be like him in diagnosis, he cannot find that. He can. He just needs to know he can find what he is looking for with a different approach. Everyone should celebrate being different as well as being alike. That’s what makes us learn and grow. Being the same would get very boring.
yes, I’m giving him a litte time because he is in a tough space anxiety-wise right now but then I’m going to talk through this with him some more. I have suspicions it’s also about meeting someone else who tries and struggles as much as he does. I know that really gets to him to see how easy these things are for others and how much he wants it and fails repeatedly.
Of course this is not the same, but I feel isolated too in that I don’t know anyone in my real life who has a child on the spectrum. Not one. I know there’s a lot of us, but like Charlie, I wonder where they are. I feel awful for even saying this and it’s not fair to wish it on anyone but I have wished if someone, anyone, I knew had an ASD child so I could have some “company” with this. I’m sorry Charlie feels so alone. I think as he gets older he’ll find a group of people that he connects with. He clearly wants to have those relationships and that’s more than half the battle. I think it’s great that he has you to talk to and that he feels comfortable telling you how he feels.
I totally get what you are saying. I have several friends now, in real life, with kids on the spectrum. I had none when we got our diagnosis. But, even so they do not have the same struggles as we do (read: aggression), so I often still feel isolated too and so thankful for my online friends who do have the same struggles.
Charlie seems so much like me. Years ago, long before I knew anything about autism, I knew I was very different and I knew all the ways I was different. And I really wanted to have kids so that I could pass that on to someone. I would never have thought of it as a “disorder” back then. I always felt like I had such a special and rare thing that I could not let it die with me. But I never did have kids.
Charlie is right. The world would be a better place if there were more autistic people. It is interesting that he didn’t mention that the people on TV said autism is a devastating brain disorder. I wonder if he ignored that comment because he knows it isn’t true.
I wonder so much what he made of that too, AspieKid, but since he did not bring it up, I tried just to stick with what he was bothered by and not put my own issues on top of that.
I so wish we were all closer together so we could set up playdates! My son at least has his social skills group friends, who he knows all have autism, but he also knows that not all of them know that (so he’s not realky allowed tontalk to them about it). Everyone once in a while an Aspie friend of his who has just discovered his own autism will ask with such excitement and anticipation if my son has it too. They so desperately seek that connection with each other. At least my son has his two little sisters, but even then, as Charlie said, their autism is different than his autism. Everyone’s autism is different. But we all need that connection. (And really it is a testament to how you are both raising him to feel so comfortable with his Aspergers, that that is the thing that would catch his attention on that program- good job Mom!) Hugs.
that sounds wonderful. I thin as he gets older this will be closer to reality for my son. he will be old enough finally in the fall to join a local Lego group for ASD kids, which I have really high hopes for.
Charlie – I have Aspergers too – BUT I’m an adult – and growing up I only remember one other kid in school who I now know was also autistic – BUT as far as I know – like with me – it was never diagnosed. My daughter is almost 6 – and she’s also an Aspie. Currently in her school there are a couple of other Aspies but not that many and those Aspies seem to be subject to a lot of bullying. Next year I’m intending to enrol her in a new school which has at least a dozen ‘spectrum kids’ (and a school-wide sensory program – even for the NTs!) out of their 200 or so kids:) … I’m really hoping she’ll be comfortable there. Also – just near our house we have an amazing little organisation called the ‘Gold Foundation’ which exists solely to help Aspies from 6 – 12 learn better social skills and make friendships (especially with other similar kids). It sounds like you don’t have that in your area – that’s a pity – maybe you can start one – now or in the future when your an adult
awww, thank you. He will be turning 6 soon and that opens the doors for him to groups like you describe. I am hoping we can find him what he is looking for in seeing himself.
I really feel for you and Charlie. I wish there were easy solutions to such complex problems. sending hugs to you both.
thank you
Oh, sweetie! I understand completely where he’s coming from. I’ve lived with feeling isolated my whole life. What made it better was finding 1 girl in kindergarten who saw past my eccentricities & loved me all the same. She’s my best friend & she still is to this day. I didn’t get a diagnosis until this year & when I told her, she just laughed & said “I’ve always known”. She said, “You’ve always seen things differently than anyone else I’ve ever known & that’s what I love about you!”.
One day you’ll find this person who accepts you as you are & who will help you navigate NT Land & when you do, you’ll just know. And they’ll just know how special you are without ever having to be told!
((HUGS)) until then for you & your strong mama because you’re gonna be just fine with her guiding you.
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Ah, I completely understand where your little man is coming from! After my diagnosis at 41, I met other people with AS, stood in a room with 40 other people and fit in, for the first time! It was a real paradigm shift. I saw that other people with AS shared my “idiosyncracies”, which made them into common traits, not weird quirks. I found I could read their body language & facial expressions easily & interpret them accurately. They communicated the same way that I did, we spoke the same ‘language’, so there were far fewer misunderstandings. We had similar shared experiences, so I no longer felt so alone. The few NT people who were in the group stood out as strongly against the AS majority as we stand out against the NT majority – I saw myself as “normal” for the first time, just differently normal. It was a major game changer for me and really helped me to redefine myself. Now I have many AS friends and no longer feel isolated, or ‘weird.’
We have been going through the exact same thing in our home. Kiddo feels like there is just no one like him. Finally this year he made a good friend who does have AS and we are moving to another county. I am going to try to keep playdates and such, but hate that I have to take him away friend a friend who he finally feels he can relate to.
Go, Charlie!
An amazing piece. So many kids I know feel this way. The whole reason we created Squag and are working hard to release the peer-to-peer. Thank-you for sharing.
thank you. I checked out your site. Looks like it would be a great resource for my guy at some point when he is a bit older (or at least knows how to read
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