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Age of Autism Presents: Top Autism Stories of 2013

2013By Cathy Jameson

While catching up on the news late last week I noticed a few site were listing their top news stories for the year.  One site was asking readers to rate what was featured on their site to compile a Top Stories of 2013 list.  I wish we could add our Age of Autism stories to their list because we’ve shared a great deal of important information.  But, the likelihood of that happening is ridiculously low.   

Instead, here’s our own recap.  It includes top autism news stories and hot topics we’ve posted, talked about or shared here and on our Facebook page.   (If there was a story from 2013 that you feel needs to be listed or continued to be discussed, go ahead and add it to the comments section below.)

2013--The Rates Go Up, Up, Up:

It was no surprise that the autism rates increased in 2013.  Just in time for a national autism awareness campaign, the CDC reported their current rate of 1 in 50 school age children diagnosed with autism.  The CDC did not update an adult autism rate, so we’re continue to look for those adults on the spectrum that mirror the same behaviors, medical problems and severe issues lots of our kids have.   

Normalizing autism: 

As with many things Hollywood, things happen in threes.  Daryl Hannah and Susan Boyle, and most recently, Dan Aykroyd, have all come out of the autism closet sharing that they have a diagnosis.  I wish them well and pray that my son, Ronan, has a fraction of success these three have had.  Maybe when he’s in his 50s things will turn around for him.  For now, Ronan, who just turned 11, is fully dependent on others, wears diapers, is years behind in development, can’t talk and is in danger of wandering.

Come Out Come Out, Wherever You Are:

Avonte Oquendo, 14, has been missing since October 4.  He was allowed to bolt out of his special school in New York City and hasn’t been seen since.  Mainstream news sources in NYC are reporting on Avonte’s situation.   Autism and wandering, a dangerous and sometimes deadly combination, is not uncommon.  Almost half of those diagnosed with autism have a tendency to wander.  While we wait for Avonte to be found, we pray he is safe and alive. 

The Waiting Game:

It took almost 10 years from the first Congressional Autism Hearing (2002) to the second Hearing (2012).  In preparation for another Hearing, the Canary Party shared this clip  narrated by actor Rob Schneider.  It illustrates the history of the Vaccine Injury Compensation Program, its flaws and the negative impact vaccine injured families have faced.  After the 2012 Hearing, another hearing was promised and would also be led by Darrel Issa with the VICP on the agenda.  That hearing, scheduled for early December 2013, was postponed at the last minute and has yet to be rescheduled. 

Lights!  Camera! Whatever: 

The HPV vaccine was a hot topic again this year and made several headlines both in the U.S. and abroad.  It was a major discussion on the Katie Couric Show when Emily Tarsell, Rosemary Mathis and her daughter, Lauren shared their stories.   Because of the controversy, dangers and deaths following the HPV vaccine, it was no surprise that a great many comments were posted after the show aired.  Unfortunately, along with the controversy comes media flip flopping.  Despite efforts to expose the HPV vaccine’s negative history, soon occurred after the segment aired, the mainstream news preferred we hear that the HPV vaccine only saves lives and that the adverse effects that have happened to 32,000 young women is just a coincidence. 

Power Trip:

Michael Bloomberg, mayor of New York City, pushed to mandate the flu shot for all tots.  His mandate became a reality when the Board of Health approved that children attending daycares and school-based programs under the age of five be vaccinated against the flu.  We’re told some exemptions are still available and encourage parents to read up on that information especially if they are concerned about an adverse reaction from the vaccine.

On Death and Dying:

These are following are only a few names of those whom we remember in 2013:

Mikaela Lynch – wandered, drowned

Alyvia Navarro – wandered, drowned

Owen Black – wandered, drowned

Freddie Williams – wandered, drowned

Chandler Webb – died post flu shot vaccination

Alex Spourdalakis – murdered by his caregivers

Susan Dunne – murdered by her son

Eternal rest grant unto them, O Lord, and let perpetual light shine upon them. May the souls of the faithful departed, through the mercy of God, rest in peace.  Amen.

Will the Self-Advocates Please Stand Up?

We’ve showcased stories here that promote not just speech gains, like when a child finally learns to talk at the age of 9, but communication gains as well. Using your voice—be it through PECS, typing on a keyboard or using a communication device, is a good thing.  Those who can speak up for themselves can use their voice not only for themselves but for others as well.  Unfortunately, some self-advocates in the autism community either refuse to, or choose not to, see the needs of children with regressive autism.  This poses major issues and skews the general public’s perception of autism as the negative side, the one my son lives, is hardly aired and often ignored.  As a parent of a severely affected, non-verbal, totally dependent child, when decisions are being made in ‘the best interest of the child’ I certainly hope my child’s rights, and those of thousands of children who will soon age out of their programs, will not be taken away by the “self-advocates.”

Books We Read in 2013:

Autism Beyond the Spectrum features stories of two Age of Autism Contributing Editors:  Cathy Jameson and Lisa Joyce Goes. 

Finding Lina: a mother’s journey from autism to hope , written by Helena Hjalmarsson.

The Business of Baby,  written by Jennifer Margulies

Movies We’re Keeping Our Eyes On:

Bought

Canary Kids Project

So many more stories could be added to the few I’ve mentioned above.  Many more will make their way onto the Age of Autism site and FB page in 2014.  Stick around.  We promise to continue to provide news that is fresh, stories that are real and topics that are as up-to-date as possible on all aspects of the autism epidemic.

Cathy Jameson is a Contributing Editor for Age of Autism.

Comments

cia parker

Vaccine Information,
Linda is right. There should be NO legal pressure for anyone to get any vaccine. The rates are completely irrelevant.
Roger,
The vaccines are something big enough to explain the huge increase in all these conditions. Prenatal vaccines and other toxic exposures contribute, but the hep-B at birth (which caused four days of encephalitic screaming in my newborn, subsequent autism, exacerbated by the DTaP booster that erased her only two words) and the MMR (regressive autism) are certainly big enough to explain the epidemic.

joe

I have a child with Asperger Syndrome. It's been an interesting, expensive, and emotionally exhaustive ride.

I find it interesting that well to do actors, who have not been in the limelight for a while, come out of the woodwork stating they are autistic. Daryl Hannah states she was diagnosed with autism as a child because she was shy and fearful to be in social situations. A diagnosis for that today would be Social Anxiety Disorder. Being shy was only one of the symptoms for autism when Hannah was a child, but not the only symptom for the diagnosis.

Her claim is suspect and I would want to see documentation. When she was a child, autism was not defined the same as it is today. She would have had to been considered severely retarded (the term used at that time) and/or have had a poor mother/child bond. Mostly kids with severe communication issues were diagnosed with autism.

Akroyd's claim is suspect as well. Again, I would want to see documentation and the therapist's credentials / experience. Maybe he was cured of his autism :)

These and other affluent folks may end up doing more harm than good because it minimizes and marginalizes children who have the disorder and who are not affluent. I fear it will put in the public mind, "look at Dan Akroyd and Daryl Hannah, they have autism and they did well for themselves."

I think the actors mean well, but children of autism and their parents are the best spokespersons, not rich Hollywood actors talking about themselves. It would be different if they were advocating, but I do not see that.

The reality is, autism it is a lifelong disability and many need appropriate services and support networks put in place with at least one lifelong advocate.

Many autistic children are being labelled bullies and kicked out of school systems. Many are put in isolated classrooms or time out rooms and sitting all day staring at the wall. Many are not getting individual educational plans put in place or even being tested appropriately in school systems because it costs the schools money. This is money they already have in the form of tax dollars and should have been budgeted.

My school system was dumb enough to tell me they did not have the money for testing. They quickly learned quickly that was the wrong answer when I told the superintendent we could take it out of her overinflated salary and that my attorney would be writing her a letter with a request for her to sit down with the school attorney and have him go over the ADA act and my state's laws with her. It was funny to me that the school handed me a parent handbook with the laws in it. I read it, they failed to do so. I had to educate the educators that day.

This is the reality of Autism. Our system's of government, doctors, insurance companies, and many Freudian taught therapists are still in the stone ages regarding being educated about autism.

So I say to all you affluent baby-boomers and Hollywood hipsters who have your shiny new autism label, pay it forward. Be a positive spokesperson for children with autism or the parents of children with autism who may not have the money or know how in regards to accessing appropriate resources. Don't just get your label and say, "hey look at me, I have autism". Do something positive and profound with your label for those who are not so fortunate as you.

Doug Sparling

John Elder Robison: I resign my roles at Autism Speaks - http://jerobison.blogspot.com/2013/11/i-resign-my-roles-at-autism-speaks.html

Roger Kulp

2013 was the year I finally realized the autism rates really were rising out of control,and not just autism.ADHD,autoimmune diseases,and all diseases involving on methylation.It was also the year I discovered a great blog that everyone here should be reading.A blog written by an autism mom,who has some very has some very likely,and very scary,answers for us all.
http://prenatalexposures.blogspot.com/

The dramatic increase in autism,and autism with intellectual disability,in particular,can only be explained by something this big.

"The CDC did not update an adult autism rate, so we’re continue to look for those adults on the spectrum that mirror the same behaviors, medical problems and severe issues lots of our kids have."

I think by now,a lot of you here are familiar with my story,and that I have a lot of the same medical problems,and frequent regressions. http://cfdhope.blogspot.com/ But I suspect I may be unique for my age group.That I may be unique,makes me very special.My experiences,history,and diagnosis means I have a lot to offer by working with either one of the big research hospitals,or the biomed oriented autism organizations.Doing what,I'm still not sure.

I have been trying find somebody to work with,ever since my diagnosis of cerebral folate deficiency syndrome was finalized last year,but with no luck at all.Would anybody be interested in helping me do this?

Linda

Vaccine Information,
Even if vaccination rates plummeted to zero percent, that is no justification for forced vaccination. The individual's right to choose and decision should be upheld and respected, just as each citizens vote is counted in elections no matter the outcome. We elect representatives but we need to have a law that states that those representatives can never make laws forcing any kind of medication on us or our children at any time - ever.

Bob Moffitt

I would add creating public pressure to finally gain a verdict in the Andrew Wakefield v Brian Deer case .. and .. again .. create greater public awareness of the failure of the US Justice Department to pursue Poul Thorsen .. under federal indictment .. along with "unamed co-conspirators" .. for absconding with scarce research funds belonging to WE THE PEOPLE.

Vaccine Information

The attack on exemption rights. I am afraid that advocates will be drawn into arguing the merits of vaccination with proponents when the pressure against lawmakers is that exemptions are affecting rates downward, which is untrue.

For example Anne Dachel reported on a segment about Maryland news program complaining about the exemption rate, yet when one followed the link in the story to the MD Dept of Health the actual numbers were that 76,586 out of 77,767 students are in COMPLETE compliance! Only 1,181 students have an exemption on file, which is 1.54% of the cohort, meaning this program is 98.46% successful.
What other public health, or any other program has that level of adherence? Vaccination compliance is 8.8% higher than seat belt use in Maryland. weblogs.baltimoresun.com/news/traffic/2011/01/maryland_ranks_9th_in_seat_bel.html
And if one drilled into that 1.54% I would expect that half of that 1.54% is to exempt Chicken Pox, based on researching other states.

California vaccination rates are similarly high, as detailed here http://www.scribd.com/doc/107086647/AoA-CA-Slides

Vermont succeeded in stopping the attempt to restrict their exemption rights in large part by showing the fallacy of the pro-sides "declining rates" arguments. In fact Vermont's vaccination rates went up and exemptions went down during the campaign when the Department of Health was claiming the opposite. http://www.scribd.com/doc/114630984/2011-2012-VT-Vax-StatsMU3-Copy
Detailed VT info here
http://www.scribd.com/doc/85943667/VT-S-199-amp-HB-527-Information

Exemptions are the logical and expected response to an ever increasing vaccine schedule. http://www.scribd.com/doc/150190637/Oregon-Exemptions-Added-Vaccines-by-Year-Grade

The vaccine lobby is taking advantage of state legislators ignorance of how vaccine exemptions work, and the true vaccination rates. Legislators are being told that vax rates are threatened when in reality they are higher than they have ever been. A common reaction from properly informed VT legislators was, "I don't see a problem here"

Carolyn Flannery

Follow up on gardisil: glass in gardisil vaccine causes major recall:
http://www.thehealthyhomeeconomist.com/743000-gardasil-shots-recalled-due-contamination-shards-glass/?utm_source=feedburner&utm_medium=email&utm_campaign=Feed%3A+TheHealthyHomeEconomist+%28The+Healthy+Home+Economist%29

Golly I wonder why this story doesn't get more play???

The Wessels

Let's not forget those self-advocates who do, have and will continue to make a difference. Let's not punish them for speaking out merely because they are able to speak. They could just do nothing instead, I suppose.......

Heidi N

I had two that were runners who I home-schooled because the school never figured out a way to handle it other than chase them. I was afraid for their life. Both recovered today - in regular school -- but still dependent on immune system treatments to keep symptoms away. Just saying, the school system has no plan on how to handle runners.

Maurine Meleck

movies to keep an eye on- Trace Amounts-Eric Gladen's

TannersDad Tim

Movies to keep an eye on: The United States of Autism - Still in the running for an OSCAR and now available on Blu-ray combo pack!

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