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Thursday, April 18, 2013

Undercover Autism

If I could pin point one statement that has been said to me countless times when I mention my kiddo's autism diagnosis it is "He looks so normal."  Wanna see my eyes roll?  Say that to me with that knowing, head nodding, thinking your giving me the world's grandest compliment look about your face.

If you are an ASD parent, you know the WTF of this statement.  "Looks so normal"?  Bitch please!  What am I suppose to say to this?  "Gee thanks so much!  You know, we've been working really hard to get him to that stealth ninja level of autism.  Nice to know its working!  Hey your kid looks really less annoying than the last time I saw him.  How ya pulling that off?"

Listen, I know this statement comes from a place of meaning well but dudes "You're killing me Smalls!"  Here's the thing.  My kiddo doesn't look anything other than seriously good looking.  Sometimes I feel bad that I don't share his picture because he really is just that cute.  (Which is something that has helped saved his bum a thousand times).  I don't see autism or normal.  I just see my kid. Isn't that all you see if you got one of those running around your house?

Maybe you think you should acknowledge somehow that all the therapy work is paying off but you are unsure how to say it.  Here's the thing, I'm not sending him to secret agent spy school with "Q" as his teacher. (Although that would be awesome!  Oh the homework would be great!). I'm doing all this stuff with him to give him a chance at a successful life.  The same thing you are doing when you get on your kid to study, or cart them to practice or rehearsal or whatever floats their boat.  Yeah the work is different.  The end results will be too. However, "normal" is not our goal.  Happy is.  Less anxious is. Content is.  Satisfied is.

Now I'm sure somebody reading this is like "yeah but those autism kids have those stims and they flap and I can spot them because I'm down like that.  I watch Parenthood and the Big Bang Theory".  Yeah they stim but guess what?  You do too!  Go flap your hands.   Right now.  Stop scrolling and flap.  Feels good right?  Might be something you do when you've been working with your hands a while and want a break.   Or your bouncing your leg as you read this.  Chewing on a pen maybe?  Twirling a piece of your hair.  Scratching your neck because the seam on your shirt is poking your skin and driving you nuts.   So yeah, you're right in the boat with those kids.  Yes, they may do it more than you but you are right there with them.  You just didn't have a section of your IEP addressing them.  Hell, you didn't even have an IEP. At the end of the day, it's great that you might be understanding of some of the signs of autism but no one is handing out extra credit for it.  Shall I acknowledge when you kid is whiny?  Sees silly doesn't it?  You don't have to point out my kiddo's autism.   Believe me, I'm very much aware of it. 

You want to say something don't ya.  You just feel you have too!  OK I'll throw you a life line.  Tell that parent simply "He/She is awesome/wonderful/fantastic as always!"  Honestly you would make a lot of parents happy with that simplicity.   Trying to tell me you can't see his neurology? Well, if you keep saying that you better learn to duck.  My purse might become airborne.  I'm just saying.  And it's an autism mom purse, so you know it's gonna be heavy.  Oh wait, you don't know about what I have to carry with me?  Oh honey. That's gonna be a post for another day.  Sit down.  Order another side of fries.  Going through that list of essentials is going to take a while.  ;-)





29 comments:

  1. LOVE IT! It so makes my day when someone tosses my son a compliment about anything.
    -Ruth

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  2. Yes...a thousand times yes. I love your comeback.

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  3. Thanks for my morning laugh. I have to remember to say "Wow. Your kid looks so much less stupid these days! But he can't be getting that from you, right?"

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  4. Thank you! I absolutely hate when people tell me this nonsense. What is normal anyway?

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  5. You said exactly what I feel when someone says "well he looks normal". I really loved your comeback! Thanks!

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  6. LMAO !! I gave up the purse years ago, everything I need is in my truck ! If we break down were good for a week! :) I read a blog or quote somewhere that has stuck with me and I have repeated it loudly in public. When I get the Oh Really ? He looks so normal ! I reply " It's the way I parted his hair ! Thanks ! Wish I could remember who posted it , I owe them a thank you ! Sometimes sarcasm is all you got ! :)

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    1. That would be me. You must follow my Facebook page. :-). I made a meme of that.

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  7. Love it. The purse comment at the end was stellar. :)

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  8. love it. so on the money.
    you rock!

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  9. I LOVE your posts! Always great insight to the home-life for an EC teacher.

    I have had a "normal kid" at school point to a kid with autism in my classroom and say "What's wrong with him, he doesn't have a wheelchair? he looks like me." This "normal kid" is lucky that he was a just a curious kid because otherwise it would have been really hard for me to be understanding and want to explain why this "kid that doesn't look like him" is in my classroom.

    your comebacks and grace always give me a good laugh

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  10. I really enjoy your posts...my son is a young adult on the spectrum and is a big dude - over 6'5", and people have been commenting on him for as long as I can remember...because of his size, people expect him to be some menacing brute, instead of the compassionate, loving, kind, and thoughtful person that he is...the worst has always been when he gets a teacher who doesn't get it, especially in high school..they thought he was a jock, for good god's sake..the last thing my son would ever want to be...he doesn't drink, doesn't smoke, doesn't do drugs...he studies and volunteers at a local pet rescue...yep, he is way beyond the norm...normal is much too pedestrian for us :-)

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  11. Oy. I don't get this particular one just because my son is not so stealthy or ninja. But we get similar ones which make me want to throw my purse. BTW, waiting for THAT post...I think I need to upgrade my handbag to accommodate a little more heft. Erm, I mean, carry extra supplies. ;-)

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  12. My usual response is "Oh my gosh so do you, but look at you being an ass right now "

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  13. Great post. I loved this comment I once got from a well-meaning mom: "He doesn't seem like he has autism. I mean, I have noticed that he doesn't read the other children's social cues, but..." That's what comes of people who know nothing about autism thinking they know what autism "looks like"!

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  14. I love this!!! This is exactly how I feel when people tell me my son looks so "normal".

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  15. My first time commenting - I'm the sister of your sister-in-law's good friend Rachel! Found your site through Deb... My son is only 5, but I've already heard this comment more times than I can count! Some seem like they're trying to pay him a compliment (WTF???), and others seem like they're doubting me.... like I'm just some hysterical mother. People have such stereotyped views of autism, if your kid is low-key and well-behaved, they think they couldn't be autistic. Ridiculous!!!!

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  16. Love this! I wish I had your passion and could say things to people without worrying about what they say or do back! Good for you!

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  17. This is amazing thanks for writing about such an important thing from such an awesome perspective.

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  18. I often hear "but he's so cute(or handsome)." Um, because kids on the spectrum are supposed to be ugly? W. T. F.

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  19. What I would give for the stealth ninja level of autism

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  20. I would give anything for "She looks so normal." Actually any kind of normal. Any kind of completely dressed, not spitting, any level of communicating, less annoying than the last time normal. Be thankful, many of us would give anything to complain about looking normal.

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  21. something i read on Facebook a while ago;

    "you don't look autistic"

    "thank you, and you don't look normal"

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  22. We don't get a lot of "she looks so normal," If she's not freaked out, we get a lot of, "she's so happy!" I am honestly beginning to wonder if giggling can be a stim, she does it so much. It distracts her, and makes her hard to work with lately. She's also taken to 'trust falls' while giggling lately. Sometimes, she goes back and forth, cry for a couple minutes, giggle, cry some more, when something is wrong. She has gotten verbal, so if she's comfortable, and starts to babble, it doesn't sound 'normal,' per se, but then, honestly, it probably looks weird when I copy her words right back to her too. sometimes they are even in english.. from the beginning of the verbal aspect though, copying her words to her would often get her to look me in the eyes and smile. That is worth all of the embarrassment and odd looks in the world. My baby finally looks at me sometimes. but, I honestly don't remember anyone telling me, "she looks so normal." maybe I just ignored them, and kept babbling at her though...

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  23. Most people don't know I'm autistic until I tell them, so I must be an expert at repressing it, right? That statement couldn't be further from the truth. Autism makes me free to be myself, which is anything but normal. Whoever makes a comment about me looking normal will take a flute case to the head.

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  24. I know this post is almost three years old, but I wanted to respond. Our seven and a half year old was diagnosed with Sensory Processing Disorder when he was four and a half. We were never totally satisfied with that diagnosis, but it wasn't until a drastic change in his anxiety this past fall that we were able to proceed with new testing. He is now labeled as autistic. We are not surprised, but when we mentioned that he was being re-evaluated for autism to a few people (mostly friends and family who WORK with special needs kids), they looked at us like we had three yes (I have four, thank you very much). I get it. Our son talks (although he has the articulation level of a three year old and also talks very high pitched). He's affectionate. He doesn't have a visible stim. Therefore, in your eyes, he cannot be autistic. Wrong. I mean, yes, at times, it's nice to hear people say he looks normal, but it pisses me off too, because they don't know that because he's having a great day, that means his bad day is going to be hell. I'm looking at writing my first Autism Awareness Month post for this year (mixed feeling about writing a post, because crap, people should be aware of it already), focusing on how autism looks in our household. Your posts on AAM has given me inspiration (I may end up being more snarky than I originally intended to be). Thanks for being honest. :)

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