Wednesday, October 27, 2010

Invisible

They call Autism the Invisible Disability. There's no outward physical markers. When most of our kids sit quietly, you'd never know they have a disability. But our kids, for the most part, don't sit quietly. There is vocal and physical stimming.  There's scripting, echolalia and rigid routines.

And then they do it in public and you get unsolicited advice and remarks. Or as Pixie Mama says people think of it as bad parenting.

Because when you see our kids with Autism all you see is their outward beauty. You don't see their brains misfiring, getting stuck on one word or script, or that even the softest clothes annoy them or loud sounds scare them.  That for some the world appears to be through thick glass and for others its like being at a rock concert all day long in front of the world's biggest speaker or so bright it's like living on the surface of the sun.

I know you can't "see" their Autism. I know it because when I look at the picture below I can't see it either but it's there.


I wonder if you could see it would you treat our children more kindly? Would you show them tolerance and compassion? Would you keep your mouth shut and not offer unsolicited advice? Would you keep your remarks to yourself?

But in all reality, if you look you can see it. You can see it in their behaviors, their way of speaking and lack of eye contact. 

At a current rate of 1 in 110 children living with Autism we are surrounded by it. Autism not really so invisible after all, is it?

17 comments:

  1. Yes, to the untrained eye it's hard to see. Hopefully as awareness increases, so too will understanding. Guess that's why we all try to do our part in our little corners of the world.

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  2. These days it kind of surprises me when I come across someone who doesn't recognize the more obvious behaviors of autism when out in public. "Autism is not really so invisible after all, is it?" - so true.

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  3. which is why we keep talking, sweets. he's gorgeous. what i see in that face is LOVE.

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  4. yes, we keep sharing and educating and telling our stories and maybe more and more people will start to see the "invisible."

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  5. Absolutely...thanks for sharing something we all deal with. Oh, and by the way, the newest statistics (in Dr. Sears' The Autism Book) is that it's now 1 in 91 children (1 in 58 boys). TOTALLY FREAKING ALARMING.

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  6. Your son and my son are about the same age. Your son is beautiful - as is mine! When I think about autism being invisible, I think you must try on the glasses of knowledge, before you can see it. We're doing that, one blog at a time.

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  7. He is beautiful. I've struggled with this for 15 years. But, I can say in those years there has been improvement in awareness and every year I meet more and more people who don't need an explanation for why my son behaves as he does. We can only hope that continues.

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  8. I agree! My daughter is now 17 so when she was your son's age the world was just becoming aware of the "autism" epidemic and the comments from passers by were nearly always a condemnation of our parenting skills. It was hurtful and isolating. Having a "trained eye", however....I would look at your beautiful son's face and see a boy who doesn't focus on the photographer and would suspect someone on the autistic spectrum. It is what I first noticed about my daughter...all my other children (3 boys) focused on the photographer when getting their picture taken...she focused off to the side.

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  9. I was just thinking last night that I was a little jealous of people who have kids with Downs syndrom, not that they have Downs, but that it has physical markers that make it obvious.

    My son is having anxiety attacks at school and doesn't want to go because his "friends" are mean to him, and his teacher doesn't understand. He's always getting into trouble with other teachers at recess for doing Autistic things because the Principle refuses to tell them that he's Autistic. He gets into trouble and he doesn't understand why because no one can see it.

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  10. I so agree with this. I have a down syndrome sister in law and a son with autism/ MR. When I go out in public with my sis in law, people expect her to act a certain way and treat her accordingly ( i.e. they cut her some slack and really underestimate her as she is on the higher functioning end). When my son acts out, I get all kinds of comments from people. I mean really he's 14 ( looks like he's 16), do you still think this is just bad parenting? How many 14 year olds still have temper tantrums? How many 14 year olds flap thier hands and jump up and down with excitement? Any way, people will say the cruelest things to me about him.But, one time I rented a wheel chair to take him to a doctor's appt ( it was just easier than draggin him in and it had a seat belt so he couldn't throw himself on the ground). Well, people couldn't have been more understanding! The difference was amazing! Suddenly, they cared because they could SEE something was wrong. It became tangible.

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  11. He is a beautiful child. Many people just don't understand that people with Autism really aren't that different to anyone else. It is all about awareness. I have written a book about Autism and am hoping that by writing it it will bring about more awareness for people who do not have children on the spectrum. To find out more visit my blog http://pushingtheenvelopeproductions.blogspot.com/
    All the best.

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  12. You spoke my sentiments exactly today. Thank you. It's been a really rough week for me and my son, and you wrote it out so well.

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  13. I really wish that those who offer their 'insight' would know that I parent my child the way I do, and handle any given situation the way I do because I understand him, and I know the best way to handle things. Trust us parents that we know what works during a melt down, even if you don't understand what is going on. But, if you feel the NEED to say something, then simply say a prayer, and bless the child. Unsolicited advice is NEVER useful. Ever. In fact, it distracts me from giving my child my full attention, and that is where it is needed most.

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  14. Well my granddaughter, Kylie was blessed with it all...physical disabilities from a stroke in utero, ADHD, CP, Heart Surgery, Cranial Surgery,eye sight problems, seizures and NOW Autism...it's NOT any "Easier" with the "Looks" of being disabled, people still offer their advice with her behaviors, some are just ignorant. And we are STILL discovering things with Kylie that haven't been explained in the medical field genetically as time goes on.
    You can find a video of "Kylie's Journey...Our Earth Bound Angel" at www.youtube.com/countrybyaudrey

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  15. This is all so true. I have a 7 year old with Aspergers, high function but lots of tantrums. The sad part is I was a preschool teacher for many years. I saw the signs but I chose to ignore them because I'm a statistic and said, that can't happen to my kid! A person just never knows!

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  16. So interesting the comment about Down syndrome - I came over here through a link from the Autism Speaks Twitter feed. My 3 year old has Down syndrome. There is an automatic assumption made about her (dis)ability based solely on the features on her face. They assume what limitations she has, assume what she can't do - I know - I remember well when I was given her diagnosis right after she was born and all the "can'ts" and "wont's" associated with her disailbity.

    One thing all of us learn, though, in the broader community of special needs is not to assume anything. Labels are such difficult things - in some ways I would imagine it is hard to have your child labeled (with Ds it's hard at the beginning, but there just isn't any way around it, lol. Most of us get used to it pretty quickly.) But, I know in my child's pre-k class the ratio is 6 with disabilities and 6 without. Everyone knows which group my child is in when she walks in the door. But I'm not allowed or supposed to ask. Same when for her early childhood class. So I would see certain behaviors, but was always afraid to ask. If you don't know, it is hard to know how to feel about the origin certain behaviors - not sure if that makes sense. I agree, kindness is a sure help, but are there other things that if I knew would give me clues perhaps for helping?

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