The Dichotomy of Autism

October 27, 2008 at 8:52 pm 7 comments

     C’s autism “things” are not always completely obvious to the general observer. Many a time, when I’ve shared his diagnosis with someone, I hear, “Really? I had no idea!” I then challenge them to watch him in an unfacilitated situation, such as recess, the park, or a birthday party. Yet his excellent speech continues to stump people who expect kids with autism to be silent, and his outgoing personality adds to that confusion. For C, it’s an exercise in extremes. Sure, he’s outgoing, so much so that he’d talk to Freddy Krueger in a dark alley. And while I love his friendliness, it’s also one of the biggest concerns we have about him. 

     I also love C’s tendency to wear his emotions on his sleeve. You know how he feels, and he generally moves through his feelings fairly quickly. He feels it, and then he gets over it. Yet sharing every feeling one has whenever one has it is not particularly acceptable in 2nd grade. We worked on restraint last week in preparation for today’s “Best of the Best” math contest at school. He has a tendency to cheer, yell and jump up and down when watching a contest. He’ll root for anyone and everyone with passion. But when he’s in that contest, watch out. His competitive streak has gone from zero to 60 in no time, and has brought with it a whole host of other new behaviors such as fibbing, cheating and being a sore loser. His teacher warned us last week that he was cheering for himself when HE got a question right in practice sessions, therefore distracting everyone else and making his fellow competitors feel bad. Many social stories later, I felt pretty comfortable he wouldn’t be too giddy if he did win and probably wouldn’t have a fit if he didn’t. So off I went today, to watch with other parents while he competed in the Best of the Best. He was wiggling all over and barely able to contain himself, but he did it. He was thrilled to be part of the competition and didn’t care that he didn’t win.  

     But then I started to wonder. It’s a conundrum, really, as everyone expects so much from him simply because he is able to do so much. I still find myself being glad he looks 4 instead of 7 1/2 when we’re on a plane; I think people will cut him more slack when he’s doing his “I have autism but most of you probably think I’m acting like a 4 year old” thing. I struggle with thinking the typical world is trying too hard to make him fit into the typical world, and I don’t want him growing up thinking the world around him has tried to change the very being of who he is.

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7 Comments Add your own

  • 1. FXSmom  |  October 28, 2008 at 5:36 am

    i know a lot of adults who cheer for themselves when they win 😉

    I love your last paragraph. I mirror that same thought (i tried to find a better word but i have 5 people talking to me at one time…lol)

    It’s true, adults do that too. It bugs me when I can see both sides of the issue here – on one hand I understood it was disruptive to the other kids, but on the other hand it’s who he is, and it’s great that he finally has a competitive streak. It seems a bit like a lose-lose with this one, and it irks me.

    Reply
  • 2. StatMom  |  October 28, 2008 at 1:10 pm

    I can relate so much to this post. My daughter is so much like you describe your son, and I get the same responses. I challenge people who think she is typical to watch during bath time when she has anxiety attacks about water *possibly* touching her face, and a complete and utter meltdown if it actually does. Or when she loses it because something isn’t exactly and precisely the way she thinks it should be. Yet she is gifted, has an excellent vocabulary (which she uses to drive many insane lol) and can be very outgoing with people she does not deem “stranger”. Our additional challenge is that she looks about two years older than she is – so far off the growth curve that she literally is not in a percentile on any chart. For that, people expect more.

    That would be tough to have a child that looked older. Very tough. And while I take the “I had no idea he had autism” comments as a compliment in how well he’s doing, sometimes it feels like a challenge. Rarely do I think it is, however, although one time I had someone – someone that I barely knew – ask me if we’d had it diagnosed by a reputable doctor. Sheesh. People are weird.

    Reply
  • 3. robinaltman  |  October 28, 2008 at 5:48 pm

    That is a conundrum! You’re so right! You want C to fit in, but why does he have to change all the cool, fun, different parts of himself? It’s so unfair. What’s so great about fitting in? I wish I knew the answer.

    I always try to follow his lead – if he didn’t seem to care so much about making friends and fitting in, I wouldn’t attempt to help him with it much. I guess for him it’s not even fitting in, really – I don’t think he’d be able to consciously say that. But he does want friends. Desperately. He does finally have a real friend who seems to accept him on his terms and the way he is, but boy, are those few and far between.

    I just hate that dichotomy part of it. I hate that he has to change himself in order to be what people think he should be. But at the same time I know all of us do that to some extent. But to most of the rest of us, it comes easier and without the damage to our self-esteem, you know? I’m not sure yet if there’s any change in his self-esteem, but I keep reading all this stuff from adults with autism and Asperger’s, and so many of them talk about the pain they endured by trying to be something they weren’t. It’s heartbreaking, and I don’t want him to feel that way.

    Grrr…

    Reply
  • 4. goodmum  |  October 28, 2008 at 8:04 pm

    I totally get this. (I also get C, as I’m a sore loser who cheers loudest for herself,too) It’s hard when your kid has what could be called (at times) an “invisible” disability (or difference, if you prefer that word). People are quick to offer suggestions (just make him eat it – we get this one a LOT) and opinions, even though they really just don’t get it.

    StatMom? Your daughter=my son when it comes to water on the face.

    Ohhh, the “just eat it” thing drives me NUTS. No one understands feeding problems unless they’ve dealt with it – it’s just so counterintuitive, really. And it is tough when people can’t look at him and see what the problem is – I worry sometimes they might see a whiny little kid, or a too big for his britches kid, but most of that is autism related.

    And some of that water thing here too. For whatever reason, that has improved for C a little bit.

    Reply
  • 5. Holly's Mom  |  October 29, 2008 at 12:32 am

    I am new to all of this and struggling with teaching Holly my 7 and 1/2 month old to eat baby food, the grandparents basically think i am incompitent, and if they weren;t 3000 miles away that they could do it, but she is truely defient, and developing new skils i front of my eyes as a way to not let the food into her mouth, since she has been hitting so many milestones and show mild delays only (fragile x) I and torn on what I would do if I didn;t know she had fragile X. I might force her to eat, make her sit there till she does, try to let her get “hungry” and give her food instead of a bottle, althougt I might not really have the resolve of my thoughts, but because she has fragile x i wonder if it is related to maybe a SPD thing, or just her not getting it and understanding what food is, event hough I see other 7 months old eating away, and even 4-5 months old, opening up and taking food with ease… So I also get the dilema thing, at letting her be who she is, but not sure how I would treat her if it wasn;t for fragile x. its all very hard, and from the sounds of it, you never get used to it.

    Oh, dear. In-laws are sometimes so helpful, aren’t they??? It does sound a little like SPD issues to me – C has major food sensory sensitivities, and it started when we began the switch from bottle to food. Anything more solid than purees made him gag and throw up and eventually refuse to eat things. It’s definitely hard, because feeding our children is supposed to be easy, right?

    I don’t think you ever do get used to it, but at least the challenges change through time so you don’t feel like you are fighting the same battles all the time, for the most part. There are definitely some recurring themes over time, but I feel like there’s enough variety I don’t get to the point of wanting to pull my hair out TOO often.

    Good luck with eating – if you want to chat further about the eating issues, let me know. We’ve been there and continue to be there. Even though C is nearly 8 years old, it’s always been the biggest issue he’s had, and continues to be so. It’s tough.

    Reply
  • 6. kristi  |  October 29, 2008 at 6:34 am

    I think a lot of people may think my son is being rude when he doesn’t respond to a question right away, or word things properly when he finally does answer. I don’t tell everybody I see that he has Autism but if they are especially curious or RUDE, I will tell them!

    I know – with C he doesn’t look most people in the eye (shyness has begun a bit) when responding, and truth be told I don’t push him to do that, but I do wonder what other people think about that.

    Reply
  • 7. looksgoodinpolkadots  |  October 29, 2008 at 7:51 pm

    We are pondering our first international flight with Little Critter… she is almost 4 and acts like a demon-child. 🙂

    I feel like I need to explain her behavior to everyone, I need to just learn to ignore everyone else!

    Oh, Dear LORD I hate flying with C. He doesn’t sleep in the plane or car – EVER, and it’s a matter of keeping him constantly entertained so he doesn’t disturb anyone. I HATE IT! It’s exhausting to fly with him.

    I am the same way about explaining. I don’t want people to think poorly of him (or me, I guess) for his behavior. Having him look so young really does help, but I still find myself sharing his diagnosis with just about anyone! It’s silly to worry about, but especially with people whose children might potentially become friends, I figure it might tip the scales if they know more about C simply because they might be empathetic to his difficulty making meaningful friendships. And therefore they’ll be more likely to invite him over to play with their kid, or be receptive to meeting at the park, etc. I’m probably too much of an open book, but I figure it can’t hurt to share. You never know when you might be educating someone who needs it!

    Reply

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