Monday, July 25, 2011

Pulling Back The Curtain On Autism... no miracles here...



I've kinda touched on this in previous notes & comments, but something made it pop in my head again so here goes....

People are always sending me links to feel good stories about autism. They mean well, but they don't know the true side, the tough side...

And lately when autism is on the news it's a feel good story about a high functioning kid doing something great and profound. And I think that spins autism in too positive a light. It makes people think that autism is not that bad. Theyre just a little quirky like the aspergers rocker on american idol.

I think America needs to see the dark side of autism more often, like my son, the nonverbal, non-pottytrained 8 year old who bangs his head, won't eat, has crazy stomach/ bowel movements and severe ADD & ADHD on top of his severe autism.

I like to read the feel good stories too...but the feel good stories are all you hear/ read/ see about autism in the mainstream media. And I honestly think when we are fundraising or trying to get more government $$ for autism if all people know are the feel good stories, "why give them research $$, they're just quirky kids...." the kid that scored 15 points in the basketball game, the aspergers guy on amazing race, etc..."

I know there's always a lot of controversy around Autism Speaks and I'm not a fan of alot of what they do, but I will say this. I have no issues with AS with the way they portray autism. others in the aspergers community feel that AS doesnt represent them, and maybe it doesnt. but it does seem to represent those with severe debilitating autism. my son has SEVERE autism...

What also gets me is when people tell you about something they read, like music therapy or horse therapy or dolphin therapy.

"Have you heard about that? I've heard great things about that..."

They're thinking that it's a way towards a cure or healing these kids...

And while my son enjoys music therapy and might love horse & dolphin therapy, we know it's just another fun activity and in the best case scenario he'll pay attention and maybe get something out of it... but we're not expecting something magical or miraculous to happen

Like we got our autism service dog, Paula :-). And we were realistic in our expectations. We hoped that it would help with some safety issues and maybe Kyle would build a relationship and have some empathy towards another creature. And it's worked out nicely. It's still alot of work but totally worth it.

But people ask me about the dog DAILY. And I can hear in their voices when they ask the questions that they were looking for / expecting a miracle.

No miracles here!

18 comments:

  1. No miracles, but still hope :) Most importantly though, a safe and happy kid with parents that care deeply about him. :)

    Thank-you so much for your blog :)

    -- David's mom

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  2. I got an email from the school telling me how well my son was doing with turn taking. My son? The one who hits himself or anyone/thing closest to him when he doesn't get what he wants ASAP? And then I witnessed him turn taking yesterday! Ah, the little things with a severely autistic child are the BEST!!!!

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  3. I so agree with you....I've actually commented on you tube videos that portray these high functioning kids....and I state my case very clearly....aspergers CANNOT be compared to severe autism...these folks complain about navigating the social world while they sit in class at Harvard....when I am just trying to teach my 11 year old kid to stop pooping in the shower....gimme a break!! and they get so pissed when I say the same thing you wrote..."who is going to spend money by donating to an autism research charity, when the folks representing autism are on public service announcements, so eloquently stating why $ is needed..?"...sigh...

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    1. I don't think this is very fair though I agree that Autism and Asperger's should not be lumped into the same diagnosis the way they have done. I am completely empathetic to the fact that adversities for classic Autism are on a greater scale than high functioning Autism like PDD-NOS or Asperger's but the challenges both children face are still real and while those with classic Autism are easily identified, those with high functioning Autism have the disservice of being "assumed" to be neurotypical or "normal" and then being held to the same standards as other children. I agree though there needs to be more awareness. Even daily life with someone with Asperger's or if you have Asperger's is a struggle itself and there are many areas that overlap with classic Autism like meltdowns, throwing, sensory...I could go on but I'd be here all day. It is NOT just about the social world like you assume and if you are an advocate for Autism (not just severe) awareness, then shame on you for thinking that's all it is. Even high functioning people with Autism struggle with academics for various reasons and they aren't all "geniuses" the way you imply. Even high functioning kids may dabble in various potentially embarrassing and challenging behaviors and even worse is when it's assumed they are "normal" so people stare, judge and laugh and ask why they do those things unaware half of the time they have high functioning Autism so the whole "woe is me, we have it so much more worse than you" attitude does not matter nor does it help Autism awareness.

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  4. Thanks for your honesty and I agree completly.way to many feel good storys out there and most were written by someone who will benefit by the said therapy or meds. ~ kyle's mom

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  5. Awesome Blog !! I'm happy for the ones that made the news , that play Mozart,photo graphic memory, singing etc. But seriously WE ARE THE OTHER 99%. Walk in our shoes for a week, or at least 2 overnites ! Than write a story !! I don't have any stories or miracles that will make the news and I don't exactly appreciate reading headline about this new diet cure, and this child that went to Harvard. It's not the same as what we deal with on a daily basis,it's misrepresentation. "Warrior parents" that we are, have you ever read about poo flinging,or smearing, oh yeah , in Monkeys ! What about being awake for 32 hours because our child wouldn't shut down, he couldn't. You know every damn one of us has broken a personal record or even a Guiness record in something!!I'm up to 5 broken toilets in 2yrs ! Maybe 2 uninterrupted showers this year ! I read that we are under the same stress as a soldier fighting in the war, where's my parade ?? Where's that headline ??

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    1. I feel for both sides because my son is smack dab in the middle. I get tired of every person telling me about a story they heard. I just had somebody tell me yesterday they heard about a lady overseas who turned on all the radios and TVs in the house to force her autistic kid to focus on what she was showing them....They all mean well. My son is non verbal and has horrible behavior issues, constipation, eats about five things total, etc...but he ALSO is very healthy medically. Understand most of what you tell him and had made a lot of progress. So, I get tired of hearing that no funding is available because my child isn't autistic enough and that he could never be mainstreamed because he can't talk and is nowhere near normal. We all have our battles. We all need to support each other and take out or frustrations and hurt the right places. I feel for every parent, but at least we are getting some attention. There are millions of parents of children with debilitating diseases who aren't being heard at all. Now we have a place to start so we go from there. We force them to show all walks and faces of autism.

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  6. I sometimes think that high functioning Autism needs a different name. Even though there are many similarities in behavior, calling it all Autism causes too many parents to fight amongst eachother. "I have it worse than you!" or "Must be nice that your kid can do _______________". Its not fair. While many parents of HFA kids cannot fully relate to those with LFA, it works the other way around too. In many ways, its comparing apples to oranges.

    My neighbor has a child who is non verbal and considered low functioning. I cannot compare our kids. Our struggles are extremly different.

    I talk of the good things. I have aspergers and 2 of my daughters are considered to have HFA. I have to be very careful of what I write...one day they may come across these things. I dont want them to be embarassed. Someone might assume that this means I deal solely with social issues and not the "hard" things. Couldnt be further from the truth. We've dealt with poop issues, non potty training issues, self injurous behaviors, severe sensory processing disorder, sleep problems,meltdowns and even WEEKS of no language at a time.

    Perhaps my not highlighting the difficult times contributes to the great divide btwn HFA and LFA parents though. FOod for thought.

    Either way, I do agree that there needs to be more well rounded stories shared and I appreciate everyones opinions. Some parents of moderate-high functioning kids need to hear the positive side though. Sometimes we can get so deep into the negetives and lose focus of the positives.

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  7. I have such a hard time tolerating the neurodiversity crowd when they attack the way autism is portrayed. THAT portrayal of autism is accurate for my child. It may not be accurate for you, and most certainly you deserve acceptance too, but don't take away from the low functioning child who will never achieve a fraction of the independence you have. drives me crazy! Can't wait until the day when "autism" is a word that describes a collection of symptoms, but isn't the diagnosis. When we have subgroups that are accurately identified, named, and independent of each other. Ok, off my soapbox now....

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    1. Its hard to portray both high functioning and low functioning Autism at the same time. I believe in Neurodiveristy and in the beauty of Autism...however, I do agree that BOTH ends need to be accurately portrayed.

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  8. Great blog!! I am so lucky in that my sons are not severe. I have had the potty training issues. My 9 year old is not potty trained yet and may never. He also has global developmental delay and many other issues that come with that. It's frustrating and I would take all that from both my sons if I could. If there was a cure I would be first in line with both of them. I love them dearly but I would take it if I could. If that makes me unaccepting of them than so be it I guess. Lower functioning families need to be high lighted so the world knows it's not all successful kids out there. Yes people make it everyday but there are 100's that don't too and someday they are going to need homes to go to and people aren't going to understand that if they don't see it NOW.

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    1. Beth S. Bollig, mom to Keegan and Braxton..Aspie and Autistic

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  9. My son has Aspergers, NVLD, and probably a mood disorder. My husband and I get hit probably 40-100 times a day. I hate hearing how 'smart' he is, because he really isn't. If he isn't interested in something , he won't learn it. My husband and I both work with low and high functioning children on the spectrum. It's the nest constant aggression we can't tolerate. After 20 years in the field, no parent with a child with ASD has an easy life or should be judged or compared. It may be different, but trust me, it's just a different kind of hard.

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  10. Its a spectrum disorder for a reason. There all different. The main stream media focus es on the HF . Nobody wants to hear about the aggression, the non verbals, the verbal but with the IQ so low that they can't score it, those that will be perpetualy a little child that can hurt you like an adult boxer. Society needs to know that Autism is only a part of we deal with.
    I totally agree when you bring this subject up.

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  11. I personally love the positive stories. I am very inspired by them because i know the huge things those kids have had to overcome to reach those success'. Its like looking at a person with a great body and assuming they dont need to work hard to achieve it. Dismissing them instantly because they must have good genes. Speaking for myself, I work out 6 times a week. I get up before the kids and literally work my butt off! I also started out 60 lbs overweight. But people dont know that when they see the end result. So they judge and dismiss my success, because clearly, I must not have had the same issues they have.
    Same can be said for these sucess stories. Not all kids will advance. Some are for ever non verbal and unable to function in society. But I enjoy they inspiration I get from the parents who started off their journey with a child who once only rocked back and forth and was unable to communicate. Being high functioning does not mean that it was always simply just being socially awkward. Even if my son will never do those things, it fills me with great joy knowing that some other parents got to see their child go so far!

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    1. I agree with you in many ways.
      The Rah Rah Rah Autism is Awesome cheerleading is hard for me. Because I know that for so many people, it's not awesome. Not at all. Whenever I read broad, generalizing statements about Autism that really seem to reflect only higher functioning Autistic peoople, there's this voice in my head that says, "Well, what about..." Yes, our children are always awesome to us as parents & caregivers - my child was awesome the moment he was born & all he had to do was lay there. And yes, when he makes progress & can do things that he couldn't come close to doing before - that's also awesome. But are his meltdowns & fear of solid fruits & vegetables awesome? Hell, no! My child is pretty high functioning - some of his quirks that are due to Autism are fine with me & I have no desire to cure that. But I would like to ease his anxiety & communication difficulties big time. And if someone could find a miracle to truly help those with more severe Autism or any severe neurological/developmental disorder - that'd be freaking awesome too.

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  12. I think the whole spectrum part of Autism is what is the trickiest thing of all. Due to the past months that I've spent reading so many blogs, finding so many supportive FB pages & posts, I've found so many parents with very different children all over the spectrum, yet many of our concerns are the same, despite differences in severity & mildness. Some of it is just about being a parent - or being a parent with additional challenges. That's part of the reason why I like this blog, and blogs written from the perspective of parents with moderately severely autistic children, and written by people with high functioning Aspergers, etc. Because as different as our children are, different as any individuals are - our concerns as parents are so similar - our struggles at some point or another are so easy to relate to. We all sort of have the same kind of story of trying to figure out life before diagnosis, then dealing with diagnosis & then dealing with all the steps that follow. I can say, well, my child isn't just like this child - maybe he's much higher functioning or maybe not as high functioning in some respects. But I understand the joys & disappointments along the way, as we all have joys & disappointments.

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  13. i think what the NT world misses is the anxiety we all feel about our kids' futures. Who will be there for them..if/when they need someone...b.c maybe will this therapy and aides and OT and..x and x and x produce not only a happy person but a mostly independent person. don't want to hear my "Sheldon" needs a "Leonard." don't want to hear my oldest girl could be "a 2nd Mommy." That's what i think the rest of the world doesn't get: what happens when I'm no longer capable. very scary.

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