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Decoding Autism

This is a guest post by Sara Lee Kessler, the reporter, producer, and writer of “Decoding Autism” on NJN Public Television. “Decoding Autism” will premier on Monday, September 27 at 9pm EDT on NJN1. Viewers can also watch online here.

I have been NJ Public Television’s Health & Medical Correspondent for nearly 15 years, and have done stories on every medical condition imaginable. Autism is the most heartbreaking topic.  It’s heartbreaking both because it wreaks havoc with parents’ emotions and dreams for their children and because it frustrates the child who can not express his needs. Autism spectrum disorder is a devastating diagnosis, especially because there is no known cause and no cure.

When I first started reporting on autism, in 1997, it was rare.  Few people had heard of it.  Today, it’s unusual to meet someone who doesn’t know a family that’s impacted by autism.  Some people are calling it an epidemic because the numbers keep going up. One in 110 children is now being diagnosed with an autism spectrum disorder. Here in New Jersey, the rates are one in 94, which has the highest prevalence rate in the nation. While there’s disagreement on whether the ever-rising autism prevalence rate constitutes an epidemic, I think we can all agree that, at the very least, it’s a major public health crisis!

That’s the reason, even after doing at least 30 “Healthwatch” reports on autism, that I decided to delve deeper into the topic and produce a documentary. Over the last eighteen-months, I have interviewed autism experts, educators and dozens of parents, children, and scientists for this project. But, ultimately, I decided that “Decoding Autism,” should focus on  what doctors know, what scientists are finding out, and how the flurry of autism research across the nation is starting to shed light on this mysterious disorder.

What I’d like to share with you, and what’s most encouraging to me, is that some of the best minds in the nation are working on autism.  They are researchers who are looking for and who have discovered gene variants involved in autism.  They are psychologists or neuroscientists who are conducting infant-sibling studies on “at risk” children, meaning infants who have an older brother or sister on the autism spectrum.  It was amazing to learn that infants who go on to develop autism spectrum disorders tend to look at a mother’s mouth, rather than her eyes, missing important social cues.  So, that’s why so many children with autism tend to be mind-blind!  Everyone I interviewed shed so much light on the subject of autism.

I was particularly fascinated by what researchers told me about the brains of children with autism.  I learned that, at core, autism is a brain connectivity disorder that causes signaling delays. No wonder children with ASD have trouble communicating!  One expert told me that the brain of a child with autism has a tangled web of abnormal neural connections that fail to prune at critical stages and that the brain of such a child tends to be larger.

I also learned that we should be talking about the “autisms,” with an “s,” rather than autism, because, just like cancer, there are many different types of autism. Scientists say it’s critical that they find biomarkers, so they can develop treatment targets. As you’ll surmise when you watch “Decoding Autism,” I’m optimistic that today’s research will lead to tomorrow’s prevention strategies, earlier intervention, better therapies and, even cures.  That’s critical because parents of children with autism deserve answers.

  1. Bobbie Jo Hernandez
    September 23, 2010 at 9:50 am

    Hello!

    I just wanted to say thank you for all of your hardwork to put this piece together. As a mother of an Autistic Child, I’m so excited to see what they have to say. I love the way they explained how autism can effect the brain. Once again thanks so much!

  2. Katie Wright
    September 23, 2010 at 10:13 am

    Thank you Sara for using your talents in order to bring awareness to autism. Without media coverage the situation would be much worse. At least people now have an understanding about autism, the prevalence and the incredible challenges our families endure.

    As a parent of a 9 year old I want to express the desire for our scientists to focus more on treating children in the here and now. ABA and Speech, evidence based interventions, have been around for over 20 years and still they are not recovering even half of the kids who receive early intervention. Yes, we need good diagnostics and early intervention programs but that is easy compared to what comes next. What do you do when your child does not improve via traditional interventions? Why are so many children regressing into autism? Why are so many ASD children chronically ill? These are important questions to which the mainstream scientific community have given short shrift.

    I know my child had bad eye contact at 18 months but how do I fix it? Rather than studying eye gazing for 10 years parents would rather see that money invested into therapeutic interventions. I only found a vision therapist who could work with ASD kids through a friend of a friend of a friend. I know my son’s brain has signaling delays and that his brain failed to prune neural connections but what caused the brain inflammation in the first place? Why aren’t scientists applying the same vigorous attention to environmental science as they are to descriptive neurology?

    Autism has increased almost 2,000% over the past 10 years. There is a real increase going on and it isn’t because our genes are spontaneously mutating in isolation. Does the fact so many ASD kids have a family history of autoimmune disorders make them more vulnerable to environmental insults? Lets’ study the environmental insults parents feel are important. We cannot change our genes but if we identify triggers we could at least prevent a % of ASD and develop better interventions based upon the cause. Describing eye tracking for the 1,000th time isn’t helping our kids.

    There are many amazing innovative scientists who cannot get funded because their ideas are new and organizations and the NIH fund so many traditional risk averse scientists who have been studying same thing forever and making little impact. Given the abysmal state of prevalence and the lack of interventions, fear of controversy and fears regarding the study of environmental triggers are petty concerns.

    We need to see more progress more accountability for our research dollars.

  3. September 23, 2010 at 12:35 pm

    @ Katie. Karie my name is Damien. I do not have a special need child, but I have a few personal friends that do and through my company I have met over 30 parents of children with special needs. I wanted to share some information with you. The following link provides you with over 20 anecdotal testimonial of a holistic product called Nutriveda that is getting some amazing results. Since I have seen the results with my own eyes…results like childres who weren’t able to make eye contact now making eye cntact, and the same child who was grunting is now speaking full sentences. The results are amazing! http://naturalfatkiller.com/special-needs-children-testimonials.php I wish the best to you and your Family!!

  4. September 23, 2010 at 1:08 pm

    I am a mother of a daughter with autism. What I would like explained on one of these documentary is that you can not catch autism. Because when I meet kids not with autism they always ask me that question?

    Thank you,

    Beverly

  5. Lisa Barber
    September 23, 2010 at 9:38 pm

    I enjoyed reading this guest post. Is there a way to get a copy of what is going to air on 9/27? I live in NC and am trying to learn as much as I can about Autism. My 4 year old son was diagnosed last year and we are learning every day something new.

  6. Tiffanie
    September 24, 2010 at 2:58 pm

    I’m actually in this documentary speaking about my son who was 2 @ the time. This is the link where you can view it online. http://www.njn.net/television/specials/decodingautism/about/watchonline/index.html

  7. L.V.
    September 27, 2010 at 2:37 pm

    Ms. Kessler, I just want you to know that I’m the very dedicated mother of a 15-year-old with autism and I certainly have never thought our son’s ASD was “the most heartbreaking topic” nor a “devastating diagnosis, especially because there is no known cause and no cure.” That really makes it sound like our kids and we parentse have no joy in our lives. This is so far from the truth. I can understand how it must have been quite natural to convey the feeling of being overwhelmed in your article as that is what our lives must seem like to you, the documentarian because you don’t live it, but I can assure you that a great majority of us deal with what we have to deal with, figure out how to make the situation better the next time, and then move on. This has, quite simply, become our way of life. Susre, our son’s diagnosis was devastating almost thirteen years ago, perhaps even more so then because there was so little information about ASDs at that time (1998), but if we had approached every day with doom he would have never made such tremendous strides. Has it been easy? No. In fact, in our rural part of the country we had to advocate for the ABA that didn’t exist here then.
    I was his first home teacher – ABA made every difference in our son’s development. Our positive attitudes toward our son’s potential – as well as always insisting that the bar be raised for him – along with the cooperation of many, many medical and educational professionals have given our son a bright future. I look forward to watching the documentary to see what medical advances are on the horizon. Thank you for bringing this important medical issue to the forefront.

  8. Leslye Vaughan
    September 28, 2010 at 5:33 am

    I am in England and I cannot seem to view this online at any link…my computer screen keeps saying diagnostic problems ,but only with this address…anyone else having problems….,

  9. Kelly Smith
    September 28, 2010 at 5:20 pm

    As a mother with a very high functioning Autistic daughter I am so pleased to read this. The more you do your studies the better our children have hope of recovering. I am very blessed to say the least that Gracie is high functioning. But I have seen the worst of these children. It is devastating for parents. It breaks your heart. We can’t go to the doc and say ok fix her. I rely on God to get me through the rough meltdowns. Together as a community of Autism we will find the missing pieces. Thank you for all you do.

  10. Barbara Roman
    October 1, 2010 at 2:27 pm

    I married a man in 2004 who I met at church. We only knew each other 1 month before we married. We had many differences which made me do research on the web. I feel like my husband is autistic and he will be 69 in Nov 2010. He is serving a 8 yr sentence in FL Prison for sexual crimes against granddaughters, which I don’t believe he is guilty of. He was never diagnosed with autism or any disorder similar to that simply because he doesn’t complain. I just wanted to share this with you.

  11. Katie Wright
    October 3, 2010 at 9:23 am

    Wow, this show was so poorly researched and executed!

    Interviewing Paul Offit about autism? Why? He is not a clinician, not a parent of an autistic child, no an autism researcher? You might as well interview my neighbor- he is a researcher too. Obviously Offit was included to slam families who saw their children regress post vaccination fevers and febrile seizures.

    Genes and more genes- nothing new- no innovative science or scientists were interviewed- yet Alison Singer was? This person had to leave AS precisely because she could nor represent more than a narrow % of the community.

    I have no idea why AS promoted this program or wanted to be a part of it.

    • February 18, 2012 at 5:00 pm

      That/s always the result of not knowing up to date information in their own field., /the program is filled with mistakes, long ago changed information and out right ‘bombastic diatribes.. The /Center for Non Invasive Brain ‘Treatment [us] own and\ or have USPTO Patent and ”Trademark rights to everything these people are using for their Autism machine.. We have two working ;Prototypes of EBA [electrodynatic Brain Animation] the real,actual and only working ‘Autism improvement’ machine in the world. and since we have run completely ouf of funds our ‘infringements people tell us we will put together an impressve introduction for release mid may ; meanwhile after all these other major brain machine folks have spent their own 22 thousand dollars to finally cap this thing off; we will send in a large group of men and women wearing black suits and sunglasses and having no sence of humor to start collecting ['10s of millions] of our ownership fees for the next 20 years.

      Meanwhile i continue to have to track down nichols and dimes] before after 8 years I can finally take a nap.

      I’ts really quite hilarious and I can;t wait to begin the actual legal circus and watch our manna fall from the sky;

      William Rogers, Ph.D.
      San Antonio, Texas
      BehaveiorResearch@aol.com

  12. Martha Gray
    November 7, 2010 at 2:54 pm

    What if the tangle is the result of abnormal, chemical pruning? I.e., trace amounts of mercury chemically prune neural connections that are beginning to form, causing an abnormal overgrowth to occur – sort of like the new growth that appears on trees after pruning. A bunch of smaller branches replace the fewer larger branches that grow under normal conditions. Has anyone studied this possibility?

  13. Linda Grimes
    October 21, 2011 at 12:00 pm

    Why do we not hear about autism in third world countries? I believe we would be able to single out the cause (s) in less polluted environments. Start there…and work your way to back to the US.

  14. Debbie Rabinowitz
    January 9, 2012 at 2:41 pm

    Hi! I’m a school psychologist and missed seeing the Decoding Autism show on PBS. Everytime I try to watch it from the website, I get an error message. Is there any other way I can see the show?

  15. February 17, 2012 at 6:26 pm

    Behavior Research Instittute
    San Antonio Texas
    Medical Center
    BehaviorResearch@aol.org

    Just finished watching your program on Autism. It was outstanding and validated my colleagues here at the Center for Noninvasive Brain Treatment that predicted the dynamic results of certain brain tissue could have positive enclaves concerning brain cells settling back down with an improved configuration..

    There are some serious areas for discussion and we will probably meet somewhere along the way. Now I have to communicate within you through a commentary. For one, TBA referenced being able to go through the skull without the assistance of electromagnetism and ultrasound in unison cannot be done., We invented, patented, Trademarked and own all rights to any such a mechanism ‘Electromagnetic Brain Animation”. I certainly thiink the direction we are heading is potentially wonderful; however all treatment centers and universities using any similar machine are ‘infringing’ on our property and we are starting the process of redirecting at this time.

    William Rogers Ph.D

    Center for Non-Invasive Brain Treatment.

    BehaviorResearch@aol.com

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