Ah, but I should be grateful for the attention right?

Speaking of attention, I’m not sure if I’ve mentioned about a couple of really good newsletters I get in my box every day that alert me to things that are being said and done in the world of autism that should get my attention.  The first is The Schaefer News Report and the other indespensible one is AHA

I’d be lost without the daily info I receive from these reports, which give me the best of the best info and news related to autism and high functioning autism out there in print, magazines and online media.

There’s more to write, there always is… so much to say, but so little time.  Maybe next time, we’ll get into the whole basketball team story… for right now though, my kid needs to be challenged on the Mario cart wii racing game… he beats me every time, maybe this time, I’ll be lucky.

Even if you don’t have a direct affect of someone with asperger’s or high functioning autism (PDDNOS), I think you’d find the ABC story about how something like 90% of these kids are bullied in middle school and what one community in New Jersey did about it, by forming a social skills group in the school and making it “cool” for neurotypical kids to help others like this instead of hurting them… I think the more you can make people and especially children, aware of how hurtful it is to pick on kids with this disability, and to make these children accountable for their behavior, the better chance we have of turning our society, from one packed with adults that give rude stares and unwelcomed comments at parents with kids on the spectrum to a world where people are a causal agent for positive change aka nice to each other.

Which leads me back to Oprah… now don’t get me wrong, I love Oprah… and I am one of the masses/minions who does like watching these mini “docudramas” of other people’s lives rather than celebrity interviews to find out what it’s really like for people in this or that situation.  But let’s face it, when it comes to something that’s supposed to represent your own life, or something that hits close to home, you’re a bit more judgemental and have greater expectations.  I say this because, while I did appreciate the info getting out, I was ultimately let down at how detached and thin the show was.

As for the good info: the idea of being more compassionate to parents of children with autism, while glossed over, was good to bring up.  Many adults glare at, or question a crying child, a screaming child or a tantrumming child and cast silent judgement.  The only thing worse than having to deal with a kid doing something like this in a public situation, is having to deal with the “well-meaning” stranger, who asks stupid questions like “Why is he crying? Isn’t he enjoying himself?”– or looking at you disapprovingly like it’s something you did as a parent.  Looks of pity rate on this level as well.  I like the suggestion of offering actual help over these options… though personally, I’d rather folks just ignore it and have some privacy in the situation.  Bringing this to light — that folks are downright rude and nasty to us parents is good — though I wish she took it a step further and let the idea out that if parents are rude and nasty, why are they surprised that they’re raising kids to be this way and bully the middle schoolers who are different (and by the way, it’s not just in middle school that kids with ASD get picked on… it starts young… First grade… or as soon as kids find out another kid will do anything you tell him/her to, or that a child doesn’t have the ability to lie… that leads to all sorts of issues in the hands of uneducated, unsympathic kids, not to mention black eyes and tears in our kids).

So yes, we parents could use some peace, love and understanding.  But there’s more to this issue that’s not getting talked about.  I think it’s especially difficult for typical parents to relate to parents of children with Asperger’s/high functioning autism, when they can’t actually “see” the disorder.  This is never mentioned.  Then these same parents go on wondering (and gossiping) why does your kid get services and all the attention when they seem absolutely “fine” or are bright and doing great academically, like many of our kids are.  I wish there was a show on this, or a show that would at least talk about this part of high functioning autism.  I haven’t seen it yet, but maybe in the future, or next April, when the media once again gives us our two minutes.

Another issue raised on Oprah, that I’m appreciative of, was the affect on parents, specifically women, who have to give up their jobs and the financial strain this puts on a family.  I do wish she examined the issue more thoroughly, of all the women who have gone to school and worked hard to develop a career, only to have to relinquish it in order to take care of and teach her child with autism.

This lack of personalization and in-depthness is my criticism of the entire show actually — everything seemed like a mere outline.  Oprah’s show tried to tackle too much information and issues on too big a subject with a very wide range of problems without getting in depth or “personable” as she’s capable of doing in her better shows… to any of these people or issues… yes, you heard me right, Oprah, my Oprah who I still love and admire… seemed detached. 

Also, not having a child on the show with Asperger’s or high functioning autism, or interviewing parents of Asperger’s or high functioning autism (as they did on the Nightline special and even on, gasp, Larry King) was a true disservice to the issue as a whole..  You can’t talk about Autism Spectrum Disorders, without having both ends of the spectrum represented.  Otherwise, and I think this is true in this case, people will generalize; especially the people you’re trying to reach who know nothing about ASD.  For those of us who do know, if we can’t see ourselves up there, we feel left out and disserviced). I would have especially appreciated having an adult up there talking about what it was like for him or her as a child… or is like, as an adult.  Why not ask the source?

Ah, but I’m being critical again.  I should just be glad that at least she did a show on it.  I am glad that she brought up the issues of siblings for children on the spectrum… very glad indeed.  Sibling support groups should be rising and showing up in our schools and communities in equal numbers the the rise in ASD diagnosies… but they’re not.

Still, maybe these and other issues will come up on Dr. Phil, which is produced by Oprah’s company, Harpo. After all, April’s not over… we still have a few days left to see what’s coming up.

Autism Awareness Month… sort of like Black Awareness Month, isn’t it?  Like we should be aware one month out of the year that people are black… or people have autism.  While I’m thankful for the media attention, there’s something inherently strange about this whole “awareness month” format isn’t it?  If it’s a matter of needing to spoonfeed info to the public a little at a time… maybe we should teach, like we teach out kids with ASD, and up the expectations a little… maybe autism awareness year? 

Coming up in the media:

Nick News with Linda Ellerbee PRIVATE WORLDS: KIDS AND AUTISM Airs Sunday,
April 22 at 8:30 p.m. ET/PT on Nickelodeon
(PRNewswire) Linda Ellerbee takes a look at the lives of kids struggling with different levels of autism in Private Worlds: Kids and Autism premiering Sunday, April 22 at 8:30 p.m. ET/PT on Nickelodeon. “Autism is not a mental illness. It’s not contagious, and it’s not a choice; and while kids with autism have been described as living in their own private worlds,” Ellerbee said, “they are also living in our world.  Therein lies the challenge for all of us: How do we live differently together?”

-BWC

www.autisticgenius.com

I found the transcript to the show here and while I admit, I didn’t see the show, I had a difficult time reading the interview and watching a short clip on the Larry King website… not because of anything the guests said or did, but the whole Larry King demeanor was hard to keep down.  He really came across as someone who knows NOTHING about autism… which is very hard for me to believe in this day and age. 

Now I know what you’re thinking… many people out there have the same attitude, they don’t know anything about Autism, that’s why we need celebrities to put a flashy face onto this whole thing to raise public awareness.  Still, I think if you’re going to be doing a whole show about autism and interview your guests on it, you want to come across as someone who at least has done a bit of reading about it ahead of time. Cue cards, cliff notes, a paragraph from a NY Times article or Newsweek… or Google it or something. 

And I don’t want to belabor the point but… was it just me cringing when I saw that they actually showed a RAINMAN clip doing some savant math and then Larry King asks Gary Cole “Is that a classic example of autism?” Only to have Cole squirm and ever so politely say “No, that’s actually pretty rare.” Only to have to deal with the audacity of the next question “What about your daughter?” As in, IS YOUR daughter like Rainman? Should I take her to Vegas. Can she count cards?  Gary, you’re too nice!  I know you’re in show business and you can’t say what you were really thinking… and why doesn’t someone bring a dictionary and highlight the word SPECTRUM so the general public can at least get the concept of what we’re talking about in the first place).

As if one mention of the godforsaken RAINMAN analogy wasn’t enough for Larry King, he then asks Dr. Robinson, a pediatrician who specializes in treating children with autism spectrum disorders:

KING: Was “Rainman” really off the mark or are there a lot of people like that, who can add figures and that?

ROBINSON: Well, you know, there are so many individuals with autism in the country today, that, yes, a certain percentage of them might look like “Rainman.”

KING: Who could go to Vegas and count cards?

ROBINSON: Yes. Yes. That would be a savant skill…

KING: Right.

Right my aschew… Why didn’t Robinson make it clear how ludicrious the comparison was? Doesn’t she know, the public eats these things up and Hollywood spits out sitcoms with the seeds.  Next thing you know, NBC will be developing “Rainman: The series” with the pitch being… hey, 1 in 150 people out there’ve got it… we gotta make a show for them. Think of the numbers! (If you’re working in development, right now… don’t even think about it).

Maybe it’s just the Average Joe flavor that Mr. King’s trying to come across as… maybe he’s dumbing it down for the audience.  Maybe he really just wants to find a savant out there who will fly to Vegas with him… But gee, is it me or is this just too big a deal to make a joke out of, especially one that’s not even remotely funny.  As a parent of a child with Autism, I have a hard enough time having the general public out there thinking that Rainman has anything to do with my child.  If you’re going to say “Hey, I just want to help get some info out there… Help the cause, don’t add to the problem.” It may only be TV, not medicine but if you’re promoting awareness: Do no harm, boys, do no harm.

On the other hand, Suzanne Wright was very eloquent, from what I gather from the clip on the CNN website and the transcript. She’s got a can-do/kick-butt demeanor that was just what the show needed, she was strong and personable and she got the message out to go to the Autism Speaks website, so that’s a good thing…. and she also spoke very well as to how big of a deal this is to everyone in the world right now… Bill Cosby, who doesn’t have any direct involvement with Autism, but who is kind enough to put his face on the thing and perform, to draw in a crowd to get money for research, said enough to at least come across as somewhat knowledgable about the disorder (even if it was the cliff notes kind… and I’ll forgive him that really lame “No, nobody in my family has autism, we’re just naturally crazy joke.”  Well, just a little bit… someone had to tell him after the show how terribly stupid it was to associate people on the autism spectrum with the word “crazy” even in jest… you’ve got a doctorate Bill, please… even if it is honorary… you should know better than that).

Of course, it was Braxton, Cole and Asner, each with a child on the spectrum that really had the most to say and said it best, in relating little pieces of their personal experience with the challenges of the disorder (and what a variety they had within the celeb circle… Braxton recently got a diagnosis for her 3 year old son; Cole has a daughter who’s been diagnosed and making progress in the public schools; and Ed Asner has an adult child with Asperger’s… so a spectrum of the spectrum was truly represented in the line-up. Whoever programmed the show has a great sense of structure and possibly irony, if we’re to read into it on that level.  Who knows, maybe he or she’s high functioning!)

I just wish the leader of the discussion, Larry King, himself did a little more research or at least came across as having read a few of the zillions of front page articles about the very basics of what IS an Autism Spectrum Disorder. I can’t imagine Oprah running clips of Rainman, can you? Has Oprah even covered Autism yet? I know she’s interviewed Toni Braxton about her financial, career and marital strife… but as I recall, Autism never came up.  Maybe the wonderful Ms. Braxton hadn’t known of the diagnosis at that time… maybe Oprah’s already “done” Autism and I missed it… but hey, April is Autism Awareness month after all… do it again.  Come to think of it, how about Dr. Phil chime in with his degree and all and do an Autism Awareness Special… I’d like to see HIM sit in on a typical PPT meeting, wouldn’t you?

 Anyway, I’d be curious to hear others comments about the Larry King program… if you’ve watched it or read the transcript, drop off a comment here. 

Be Aware, Be Very Aware

–BWC

(PS… don’t forget to visit my Autistic Genius store in time for April Autism Awareness Month for some neurodiversity vibe)

http://www.autismspeaks.org/video/index.php

I don’t know how to link directly to the film, so you’ll have to scroll down for it and select your bandwidth, but it looks like there’s a lot of really informative and interesting videos online here anyway that might serve as a good resource for the community.

A bit about “Autism Every Day” it opens up on, what the filmmaker described as a parent’s version of the opening to Saving Private Ryan, meant to shock the system for those seeing it… and it does seem like the audience they’re trying to appeal to here is one of the layman (or layparent) as it is, who doesn’t know what it’s like for a parent of an autistic child. I did find it a bit shocking and was wondering “Oh no, another version that makes it look to the novice that all kids with autism can’t speak or scream all the time or fit into a stereotype”… but if you give it time, I think you can find that it’s really about teaching tolerance for all of our kids and for us parents.  I would’ve liked them to include more high functioning kids up front to show that’s challenging too… but the message is still good and I realize, it’s hard to do that in a few minutes.

 The part where the parents all make their plea for parents of “typical” kids to be more understanding of what a day in the life of a parent of a child on the spectrum is like, and to not judge if you see a child screaming or crying particularly hit home to me and if nothing else, I hope that that message of tolerance, and of teaching your children tolerance is seen/heard and applied by as many people as possible.  This indeed could make the world a better place… so for that, I say watch it and email others about it.  We all could really use some of this peace love and understanding.

 But then getting the flu and all the child deaths from influenza we hear about each year is equally terrifying.

 So what’s a parent to do?  Here’s a few links to different sides of the story and what’s going on about the debate in different places around the world… I’ll be adding more as I find them, but I’d love to know what others think about this and what do they do?  I will say, last year when I discovered this information, we braved it out and I didn’t give the vaccine to either of my kids.  We waited it out and I tried to keep my kids out of public places, like malls, etc. during the worst winter months (not too hard, since I’m not a big fan of malls to begin with).

 Anyway: here’s some info:

Ped Med: Mercury Differences Raise Concern
       Recent research shows the type of mercury the government relied on as
a reference in setting safety standards for children’s vaccines differs
significantly from the type that was actually present in the shots — and
still remains in some of them.
http://tinyurl.com/yyd665

The FDA said it was in discussions with those manufacturers to increase the supply of thimerosal-free flu vaccine. There also are minute amounts of mercury, as thimerosal or phenylmercuric acetate, in roughly 45 eye ointments, nasal sprays and nasal …

http://www.msnbc.msn.com/id/15405274/Ask for No-Added-Mercury Vaccines – DrGreene.com  Read a brief article informing the public of the availability of a safer flu shot. … doctors start ordering flu vaccine during the spring … preservative-free flu vaccine was made available — for those who ask for it. A small amount of a form of mercury called … www.drgreene.com/21_1597.html

 CALIFORNIA PEDIATRICIANS REQUEST EXEMPTION FROM ANTI-MERCURY VACCINE
LAW
      “Children under three in California are being denied access to
influenza vaccination because of inadequate supplies of Thimerosal-free
vaccine.”
      http://www.sarnet.org/lib/merc-exemption.pdf

SANOFI-PASTURE ASSURES NO SHORTAGES OF MERCURY-FREE VACCINES FEB. 2006
      “Our no preservative formulation will be available until it is fully
committed.”
      http://www.sarnet.org/lib/Sanofi.pdf

SANOFI SAYS PLENTY OF MERCURY-FREE VACCINES TO KS STAR NEWSPAPER
      “While we have on several occasions sold out all of our
preservative-containing (mercury) vaccine in the last several years, we have
never sold out all of our preservative-free vaccine.”
       http://www.sarnet.org/lib/Sanofi.pdf/KCSTAR-MercVax.htm

The Mercury Poisoning Side of the story:
http://www.generationrescue.org/index2.html

Please note, I’m not personally advocating any of this stuff.  I just think knowledge is power and everyone should make this decision for themselves.  I would love to know more URLs and info on this issue if you have them and want to send them my way.  Please send them to Bonnie@autisticgenius.com

And here’s where I give you a plug to please visit my Online store www.autisticgenius.com where I create and sell products that empower families, friends and the general public with pro neurodiversity messages and celebrate the Autistic Genius.  No puzzle pieces, no “cure me” stuff here, and definitely no pity parties.  Just positive power all around.  Great for Christmas or Hannukah gifts if I might add

http://sar.c.topica.com/maafbiBabttaVbo44M1baeQyH5/
      Boy or girl? Almost half of U.S. fertility clinics that offer embryo screening say they allow couples to choose the sex of their child, the most extensive survey of the practice suggests.

      Sex selection without any medical reason to warrant it was performed in about 9 percent of all embryo screenings last year, the survey found.

Hmm, I wonder, how many parents who already have an autistic child would do this.  I wonder how many geniuses we’ll be weeding out and where the world would be if we could do this and somehow never had our Einstein’s or Sir Isaac Newton’s or Van Goghs or Alexander Grahm Bells, or Henry Fords… or even our Steven Spielberg’s and Bill Gates’ for that matter.  It’s somehow like destroying the big grey monolith in 2001 isn’t it?

Opinions?

–USA TODAY ARTICLE

– NIH (National Institute of Health) Study Press Release

– CBS News report

Hmm, I wonder if this study was funded by the drug companies that are putting Thimeresol into our kids immunity cocktails.  What are your thoughts?

 – MSNBC version of the study

–  NPR version of the study

– CNN version with video from one of researchers (which I couldn’t get to work)