As much as I wish I could speak for Shelby (my niece who has Autism, age 6)… I can’t.
And as much I wish I could scream and shout for all of the injustices that she and her parents have had to deal with on a daily basis… that wouldn’t do any good either.
So, from my faraway corner of the world (Jim and I don’t live anywhere near Shelby’s family), I seem to find some peace and satisfaction when I can share some of the specific things that have helped to clarify things for me a bit. Or have helped me find an even greater sense of hope for Shelby’s future.
You see, every time I hear something new about Autism, I want to rush an email to Shelby’s parents — making sure they’re in the loop.
But who am I kidding?… They are living this day in and day out! My emails would surely be an insult to a family who knows everything there is to know about Autism — to the extent that they’ve been exposed to it, had to deal with it, or already read about it, that is.
So instead, I look at this article you are reading now as my way of sharing what I’ve learned about Autism with others. I mean, EVERYONE seems to have a tie to Autism these days. And if I can help to bring light to even one more new study, or one more new finding, or one more new fun thing that those with Autism can enjoy, then hopefully some Autistic individual and their family will be able to benefit in some small way from this information. And if not, then at least I’m doing what I, personally, can do to stay abreast of the topic.
More than anything, I pray that the “powers that be” who control the purse strings — and those who ultimately dictate which autistic individuals get to enjoy helpful programs and services, and which ones don’t — will eventually open their minds and loosen their grip over those with Autism. It’s time that autistic children get what they deserve… without their parents having to fight tooth and nail (and lose valuable years of treatment) to get it.
Okay, here we go.
Some random links and news that I recently found helpful regarding Autism…
Newest links at the bottom
This report from the Autism Research Institute seems to be updated rather frequently in order to address the questions of new parents with a child that has been recently diagnosed with Autism. A great read!
March 2, 2005 – It was after reading Temple Grandin’s book, Thinking In Pictures and Other Reports from My Life with Autism, that I realized for the first time that is is possible for autistic individuals to break free from Autism. Yes, it is possible to get one’s language and communication skills back. Temple Grandin is an autistic adult who regained her communication skills late in life. She even graduated from high school and college, and today she is an animal scientist who has designed one third of all the livestock-handling facilities in the U.S. Thanks to Temple Grandin’s story, people with Autism have a greater sense of hope.
Here is an old FAQ from Temple Grandin about Autism from her own point of view. Interesting…
December 7, 2006 – When Jim and I got together with Shelby’s family for the holidays, they reminded us of a very touching poem called 10 Things Every Child With Autism Wishs You Knew. They had mentioned it to us the Christmas before, but this year for some reason, it had an even greater impact for me.
March 21, 2007 – The first time I saw Autism Speaks involved on a major television program was this night on Larry King Live. I was thrilled that the subject of Autism was finally getting media attention. I couldn’t believe it. I wanted to call everyone I knew to tell them to watch. This program validated that Autism is much more widespread than I (and many others) had previously thought.
April 5, 2007 – Autism Speaks participated on the Oprah show about Autism. They did a remarkable job. And I respect them a lot for all that they are attempting to do to make life better for autistic individuals and their families. On the Oprah show, Autism Speaks provided in-home videos from a handful of familes (Watch the Autism Every Day videos here). Those videos have had a lasting impression on me.
May 24, 2007 – I think I saw this girl’s story on PBS or something. Amanda Baggs is an autistic teenager who only communicates by typing. Her story is amazing. Her abilities are amazing. She is hope for so many parents of autistic children. She writes on her blog: “I am a non-speaking physically disabled and autistic woman who’s lived in institutions, whose income comes from a disability check, and whose services are funded by the state.” Check out this video of Amanda…
June 7, 2007 – Autism Speaks controversy.
The Wrights [Bob and Suzanne] created Autism Speaks just three years ago when their grandson, Christian was diagnosed with the disorder. But since then they have had such a severe falling out with their daughter Katie, Christian’s mother, that the Internet is now buzzing with a new scandal.
This week, the Wrights posted a press release on the Autism Speaks Web site in effect disowning daughter Katie’s comments in a video interview she gave to a critic of Autism Speaks. Katie Wright also appeared on the “Oprah” show in April, where she talked about the split with her parents.
Even the press release issued by the Wrights caused a buzz because it initially read: “Katie Wright is not a spokesperson for Autism Speaks. Our daughter’s personal views differ from ours and do not represent or reflect the ongoing mission of Autism Speaks. … Her appearance with David Kirby was done without the knowledge or consent of Autism Speaks.” Ouch!
September 26, 2007 – This was the first time I saw Jenny McCarthy speak about Autism on TV. This was an interview with Larry King Live and Jenny McCarthy.
This was also around the time you started seeing major news reports on television regarding Autism in general. And more and more celebrity parents were being interviewed about their children who had also been diagnosed with Autism. This is when I, personally, remember Autism starting to go mainstream in the public media.
Some of the celebrities known to have autistic children: Holly Robinson-Peet Toni Braxton, Sylvester Stallone, Dan Marino, Doug Flutie, Bill Christopher, Joe Mantegna, Gary Cole, Aidan Quinn, Ed Asner, John Travola, Tisha Campbell-Martin, and Ernie Els — to name just a few.
March 6, 2008 – This was the day Jon and Terry Poling received compensation from the Federal government who acknowledged that childhood vaccines did, in fact, trigger Autism in their child, Hannah.
March 7, 2008 – The Polings were on Larry King Live. After watching all the media reports on TV in the day following the Poling’s monetary award from the government, I couldn’t help but wonder if this would finally open up the floodgates, resulting in a) more families being compensated; and b) more Autism being attributed to childhood vaccinations. That’s when I found this information about Autism and Vaccine Court Rulings.
One interesting thing I learned is that there have been 5,000 other claims to go before the little-known “vaccine court”. Apparently, THAT is the only avenue that parents can go through to fight their case (with regard to vaccinations playing a role in Autism). And there have, in fact, been a number of other families who have been awarded monies as a result of vaccines leading to Autism-like symptoms. But most of the monetary awards have been kept confidential.
April 2, 2008 – Jenny McCarthy was on Larry King Live again (video). One of the first things she pointed out was that there are 36 shots given in childhood vaccinations these days. However, back in 1983, there were only 10. It’s just too many too soon — in Jenny’s words. (Here’s the transcript.) It was World Autism Day.
While the organization Autism Speaks is doing a lot to bring awareness and help to those with Autism, I can’t help but wonder why Jenny McCarthy seems to be more vocal about Autism on the airways than the folks at Autism Speaks are. I realize they’re doing a lot behind the scenes, but we have to dig to find that information on our own. I mean they’re sponsoring this, and they’re funding that. But why aren’t they being more vocal and speaking louder and more adamantly like Jenny is? Jenny is only one point of view, yet it’s the only one we seem to be getting lately. We need more vocal points of view and more people speaking out for autistic individuals! (UPDATE: At least one autistic person feels that Autism Speaks simply doesn’t understand autistics.)
Dozens of videos featuring Jenny McCarthy talking about Autism on various television programs.
May 20, 2008 — Good Morning America ran a 2-day special on new findings related to brain scans and how important they are in the diagnosis of Autism. They say that behavioral tests alone are not enough. It’s still controversial, but brain scans have made a difference in the lives of several autistic children. (Watch the video.) Neurologist, Dr. Fernando Miranda is even answering questions from parents of autistic children online!
Here are literally thousands of videos on YouTube about Autism. Watch as families share their stories, learn about some of the latest findings, see other points of view… and more.
June 3, 2008 – A web browser for autistic children! A grandfather who is in the software business set out to develop an Internet browser that his young grandson who has Autism could use. It’s called the Zac Browser For Autistic Children and it’s available to anyone for free.
July 10, 2008 – Harvard researchers find new genes involved in Autism that suggest the disorder strikes in a brain that can’t properly form new connections.
July 11, 2008 – This one actually applies to all children — whether they’re autistic or not. Check out these
tips for keeping your kids pain-free when they visit the doctor. The point is… children can’t always express the degree of pain they’re feeling (especially babies, and kids with Autism), and “studies have found that babies don’t always get adequate pain relief” from physicians. Follow these tips to assure that your child is feeling no pain when he or she visits the doctor or is being treated for some ailment at home.
October 23, 2008 – 10 Misconceptions About Autism – excellent points, and includes a video summarizing the top myths about autism.
November 23, 2008 – School Gives Autistic Students A Way To Communicate – as we all know, traditional schools are not able to deal with autistic students. Here’s proof that autistic children can be helped tremendously in school.
February 13, 2009 – Court Sides With Science, Says No Vaccine-Autism Link – The special court overseeing the US National Vaccine Injury Compensation Program has ruled against 3 families who claim that thiomersal and the MMR vaccine are responsible for their children’s autism.
February 14, 2009 – Despite Ruling, Vaccine-Autism Feud Won’t Fade – More than 5,500 claims have been filed by families seeking compensation through the government’s Vaccine Injury Compensation Program. Th recent court rulings dealt with the first 3 test cases to settle which if any claims had merit. Unlike in civil court, the U.S. Court of Claims doesn’t require the families to prove the inoculations definitely played a role, just that they probably did. The 3 families may appeal the ruling.
April 16, 2009 – Robots To Fight Autism – See how robots can help children with Autism Spectrum Disorders (ASD) interact socially. The robots do everything from studying the children’s social interactions and their emotional states to drawing them out socially.
May 5, 2009 – Wide Age Gap Between Possible Autism Diagnosis And Actual Autism Diagnosis – As you know, a child’s age at diagnosis is critical. Unfortunately, research shows that the average age of autism diagnosis is nearly six years old, which is three to four years after diagnosis is possible.
June 10, 2009 – Video: Adults With Autism – A taste of what the future might look like for today’s children with Autism.
November 18, 2009 – Autism Research: Is This The Best We Can Do? – A challenge to Autism researchers.
November 18, 2009 – Scientific Link To Autism Identified – After careful review of countless scientific studies, meeting with several renowned scientists to discuss their findings, and then applying the modeling process to numerous hypotheses, The Center’s Life Sciences group was able to formulate a scientifically verifiable model for the highly probable causal path of autism.
November 19, 2009 – Autism’s 10-Year Milestone – An interview with Veronica Zysk, managing editor of Autism Asperger’s Digest, about where the ASD community has been and where it’s going.
[More to come…]