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Autism Coverage at the OC Register --10 Stories

Number 10By Anne Dachel

There were a number of articles on autism published by the Orange County (CA) Register on Oct 18, 2013.  They were by all kinds of people involved in autism, including leading experts.
 
First, here's a doctor with two autistic sons.  This knowledgeable dad admits it's not genetics alone.  He also feels "we are closer to finding the problems that lead to autism." 
 
Oct 18, 2013, OC Register: More funding needed to study autism: By Dr. Dan Rossignol
 
Dan Rossignol is a physician, autism researcher, blessed parent of Isaiah and Joshua, who have autism

The first time I heard the word "autism" was when my mom told me about a family friend who had a child with autism. The year, I believe, was around 1980, and the rate of autism then was about 1 in 10,000 children.

It was not until 2002, when our older son was diagnosed with autism, that my wife and I started on a journey we would not have chosen ourselves. Our son's diagnosis was as maddening as it was devastating. Devastating because our hopes and dreams for our child were forever altered. Maddening because the doctor essentially told us, "I'm sorry; there is nothing we can do."

The CDC indicates the rate of autism is 1 in 88 children (2008 numbers), but I dare say autism is more common now in 2013. In any event, this equates with 1 in 54 boys, as boys are five times more likely to develop autism than girls. Autism is a world-wide problem with rates as high as 1 in 38 children in South Korean and 1 in 64 children in the UK.

Autism is also a major problem here in Orange County. For 2012 to 2013, figures indicate that 7,960 children in Orange County have autism, which equates to 1.6 percent, or 1 in 63 children.
A 2009 study from the University of California found that the rate of autism in California increased by seven-eight fold during the 1990s - most of which was a true increase.

Studies now show that the earlier autism is diagnosed, and treatment started, the greater the likelihood the child will improve. Some children even improve enough to lose the diagnosis. The American Academy of Pediatrics and the CDC recommend that children be screened for autism starting at nine months and that referral for evaluation of possible autism should not be delayed.
Although the cause or causes of autism are still not known (all of the genetic abnormalities reported to date only account for about 21 percent of autism cases) and there is no proven "cure," recent research is encouraging. We are closer to finding the problems that lead to autism. New treatments are emerging.


When our second son was also diagnosed with autism in 2003, at first I was upset, but my wife and I decided to do something about it. As a physician, I joined other doctors and researchers who were studying treatments for symptoms and biochemical abnormalities associated with autism. . . .
A common abnormality found in some children with autism that is treatable is seizure-like activity. Some studies have shown that this abnormal activity can contribute to autistic behaviors, such as aggressiveness, self-stimulatory behaviors (like hand flapping), poor speech and staring spells. In some children, treatment of this abnormal activity can lead to significant improvements.

More funding is needed to study autism. In 2012, the amount of money NIH spent on autism research was $192 million, or 0.6 percent of the NIH budget.

Both of our children function at a much higher level than predicted. My wife and I have seen them improve with treatments that target their underlying biochemical abnormalities. Would they have improved without these treatments? I don't know. But that is why I am involved in autism research. Because statistically there are more than 1 million fathers like me who want answers.

This parent wants to see research that does something to help autistic children.  "Fourteen years ago, there weren't many answers. . ." 

OCT 18, 2013, OC County Register:  Overcoming Autism: By Eyal Aronoff

Eyal Aronoff is the proud father of Leya Aronoff and a committed philanthropist
When my daughter Leya was two and a half, she was diagnosed with autism. She was non-verbal, had extreme food selectivity, did not complain about pain, would cry for no reason, could not follow simple three step instructions, and was unable to animate toys. On the other hand, she was a very happy kid. She enjoyed doing puzzles. She would simultaneously do three different puzzles from one pile of pieces. She LOVED the Teletubbies and could sit for hours watching the same episodes again and again. With the exception of her crying sprees, Leya was the easiest baby ever - she would never complain.

When we found out that Leya was well below where she was supposed to be, many emotions and questions popped in our heads. It was very emotional. Fourteen years ago, there weren't many answers and an autism diagnosis was an unappealable verdict. Leya seemed doomed.

Although I am not autistic, I had difficulties as a child. I did not read my first book until age 16. I am a terrible speller. Handwriting is a torture. If the keyboard had been invented 10 years later, I might have been lost to this world. . . .

Depending on severity, I believe that most children could overcome the debilitating aspects of autism. We, the parents of children with autism, need to take back the discussion, replace our anger with hope, and demand that the research community focus on practical, cost-effective clinically proven treatments.

This sixteen year old struggles with her autism. 

Oct 18, 2013, OC County Register: Finding my voice: by Leya Aronoff

My name is Leya. I am 16 years old and will be a senior in high school next year. Today, I would like to share with you something special about myself.

When I was two and a half, I was diagnosed with autism. At the time, 14 years ago, there weren't many programs specifically for autistic children readily available. I attended a special education preschool, where I learned my first words. In 1st grade, when my classmates learned to read and write, I couldn't. During that time, we found out that I also had dyslexia. Reading was so hard for me that after attempting to read two or three sentences, I would burst into tears. My parents tried to resolve the problem by taking me to an intensive reading course, which didn't help very much. This problem lingered until the end of 2nd grade. My parents came across a therapy program, which is a series of exercises that stimulate the senses, that were tailored specifically for autism. This helped me more than anyone could imagine. After six months of the program, I started to catch up to my classmates, and learning how to read wasn't physically painful anymore. I continued on the program for almost a year and a half. Slowly, other aspects of my life started changing as well. I started eating more diverse foods and being in loud places or new situations stopped being scary. My earliest memories are from when I started this program. In fact, I don't remember anything before 2nd grade.

By age 13, I had overcome most of the symptoms of autism and dyslexia, but I hadn't found my "voice." Sure, I answered questions and talked to people.

But I couldn't talk to people about my feelings and opinions and realizations. I hadn't figured out how to show or express these things in a way that would make people understand.

Here an expert from the MIND Institute at UC-Davis notes that some experts still aren't sure that more kids really have autism.   She feels, "Both genes and environment play a substantial role."  Among the possible environmental triggers are diet, nutrition, bacteria, viruses, medical procedures and medications, along with chemicals in air, food, water, soil, and everyday household and personal care products used for cleaning homes or on our bodies or hair." 

This sounds like it includes just about everything.  Hertz-Picciotto feels that "research is burgeoning and there is hope that strategies to actually prevent ASD or reduce its severity are on the horizon."

Oct 18, 2013, OC County Register: The Rise in Autism: by Irva Hertz-Picciotto, Ph.D.

Irva Hertz-Picciotto is a professor at the UC Davis MIND Institute

In the last few decades, an increasing number of children are being diagnosed with Autism Spectrum Disorders, fueling both speculation and research about the causes. Some wonder whether the increase is "real," or whether ASD has been present at the same rates, but is being correctly diagnosed more often. A few studies have attempted to examine artifacts such as improved diagnosis, early-age detection and changes in diagnostic criteria used by physicians and psychologists. This research, much of it conducted using data from the California Department of Developmental Services, demonstrates that although a portion of the rise may be attributed to these factors, about half of the increase remains unexplained. Ultimately, the proportion explained by changes in root causes versus how it is diagnosed may remain elusive. Nevertheless, a few conclusions are clear.

First, there is no single cause of ASD, and few if any cases of ASD results from one factor acting alone. Second, both genes and environment play substantial roles. Most genes probably increase susceptibility. Here, environment may act in concert with the underlying susceptibility or may contribute to it, by altering which genes are expressed (i.e., turned "on"). It should be underscored that environment is broad. It includes diet and nutrition; bacteria, viruses, medical procedures and medications; and environmental chemicals (naturally occurring and man-made) in air, food, water, soil and everyday household and personal care products used for cleaning homes or on our bodies or hair. In short, environment covers anything not inherited in our DNA code. Third, to understand root causes of this condition, we need to explore causes of both 'background' rates of ASD (genes, or exposures present for a long time) and the surge in cases (primarily exposures that have changed in recent decades).

Emerging evidence suggests some promising clues.

1) Nutritional status of the mother at the start of her pregnancy. . . .

2) Certain classes of insecticides.. . .

3) Air pollution from traffic or industrial sources. . . . The verdict is not in yet, and despite efforts of researchers to ensure valid results with no interference from factors not studied, research on complex disorders with multiple causes is challenging. Besides the exposures described above, newborn conditions such as low APGAR scores, preterm delivery or fetal distress may indicate higher risk for autism. Also, parents of children with ASD are, on average, older than parents of those who develop typically, and age can be a marker for poorer quality gametes, chronic or auto-immune conditions, more interventions and diagnostic procedures during the pregnancy, and accumulated chemical exposures or the damage they produce. Moreover, chromosomal anomalies, gene mutations and deleted or duplicated sections of DNA are more frequently found in the genome of persons with ASD, but are not always inherited from parents. These de novo genetic events may be due to unidentified environmental insults right around or shortly after conception.
A decade ago, only a handful of scientific reports dealt with root causes of autism that might be modifiable, either by individual behaviors or at the wider population level. Today, this research is burgeoning and there is hope that strategies to actually prevent ASD or reduce its severity are on the horizon.

Martha Herbert acknowledges that both genes and the environment cause autism  There are hundreds of genes possibly making us susceptible.  Yes, there is increased awareness, but there's a real increase too. 

"Much of the increase. . . likely is real."

There's probably no single cause of autism.  Herbert lists "air pollution, low Vitamin D levels, pesticides, antimicrobial soaps, flame retardants and mothers with common metabolic problems like obesity or diabetes or high blood pressure, or stress or infection during pregnancy," among the possible culprits.

 OC County Register: Autism challenges us to THINK differently: Dr. Martha Herbert

Martha Herbert, Ph.D., M.D., is a pediatric neurologist and neuroscientist at Harvard Medical School and author of The Autism Revolution: Whole Body Strategies for Making Life All It Can Be.
Autism is a spectrum of conditions. There are many ways of being autistic. Some people on the spectrum are nonverbal and aggressive. Others are accomplished scientists or artists. There is a saying, "If you've seen one person with autism, you've seen one person with autism." Each person is on the spectrum in their own way.

Models of what autism "is" are also on a spectrum. Some people consider it about behavior and psychology. Others think the behaviors come from sensory overload. Many parents reduce the severity of behaviors by addressing underlying medical irritants like food or gut problems. Some autism self-advocates don't think autism is a "disorder" at all - they describe themselves as having a "condition" that is simply a different way of being human.

Looking at all these models, I think that each one has a piece of the truth. But not one of them does the job all by itself.

Autism challenges us to "think different." Fights between sound-byte autism theories won't take care of the disruption of lives of children and families from severe autism. They won't fix the chaotic classrooms and emergency rooms. They won't solve the huge financial drain of lifelong care for the surge of people who will never be independent.

To find solutions, we need to take a fresh look, listen to each other and cultivate tolerance and even curiosity about points of view different than our own.

This is not just about opinions. If you look at the science, the foundations of our assumptions about autism are being shaken to the core.

First, autism is not "genetic" in the way we thought it would be 10 years ago. Instead of a few genes that "cause" autism, we've found hundreds of genes, most of which make you a little more vulnerable but are hardly a slam-dunk into autism by themselves. And the few powerful genes are rare. On top of that, a fair number of kids with autism have vulnerability genes their parents didn't have. Where did they come from?

Second, while the rising costs of autism are clear, some still argue that there is no real change in the numbers except for people on the spectrum we didn't notice before. But studies now show that the truth is somewhere in between. Yes, we have increased awareness and changes in how we diagnose autism, but much of the increase in ASD numbers cannot be explained away like that and likely is real.

Third, autism is actually being reversed, both in children and in mouse models of autism. And there are lots of ways of doing this. So it's not a lifelong genetic broken brain syndrome but a way the brain acts, that can be changed.

Finally, we are getting used to the idea that our planet is in trouble, and it may well be that this has something to do with why the numbers of people with autism are going up. Think about how differently we live compared to when our grandparents were young. Few chemicals, less electricity, no pesticides, no GMOs, food that was all organic, no wifi, much less running around, no planes, no TV, more quiet.

Does this mean that if we look hard enough we will find the single smoking gun that is causing autism, and that if we pluck that single thing out of our lives we can go on with business as usual?
I sorely doubt it. Our bodies and brains can only take so much, and it may well be that our autistic kids are the "canaries in the coal mine" who are pushed past the limit ahead of the rest of us, like a warning sign. . . .

It's starting to look like autism is just a more extreme and early outcome of everyday stressors. Risk for autism is increased by air pollution, low Vitamin D levels, pesticides, antimicrobial soaps, flame retardants and mothers with common metabolic problems like obesity or diabetes or high blood pressure, or stress or infection during pregnancy. Some of the new genetic mutations in autistic kids may even be caused by dads who keep their cell phones in their pants pockets, which we now know can mutate sperm genes and lower sperm count.

And when you look at the chemistry and immune system problems in autism, they are incredibly similar to the bulk of chronic illnesses on the rise in our whole population - like obesity, diabetes, cancer, heart disease, depression, Alzheimer's and Parkinson's. More and more of us are overloaded, struggling with floundering brains and bodies - it's just that it starts really early in autism. We all need healthier lifestyles and less exposures and stress.

Respect for each person, no matter what their level or style of function, is a great start. Making every choice a healthy choice is another. Lighten the total load, promote health and give the brain a chance to get its energy back and produce better behavior.

So really, everyone is right about autism - but we all need to pull together because the only way anyone is wrong is thinking that theirs is the only right approach.

Dr. Margaret Bauman admits that over 100 bad genes are linked to autism.  "While we have made a good deal of progress, many challenges remain."

 She also links autism to "older maternal and paternal age, premature birth, maternal immune disorders and the maternal use of some medications during pregnancy such as some seizure medications."

 Oct 18, 2013, OC Register: Genetics and environmental factors may cause autism: Dr. Margaret Bauman Oct

Margaret Bauman is an associate professor of pathology at the Boston University School of Medicine and former founding director of the Lurie Center for Autism at the Massachusetts General Hospital.

Nearly every day of the week, there seems to be a another article reported in the news media related to what appears to be a growing awareness of the disorder known as "autism," it's potential causes, some reported "cures" and evidence from promising research. . . .

Scientific evidence supports a strong genetic basis for what is now being called the Autism Spectrum Disorders. Well over 100 genes have been reported to be linked in some way to this disorder. . . .

While a role for genetics remains the dominant theory, other risk factors may play a role including older maternal and paternal age, premature birth, maternal immune disorders and the maternal use of some medications during pregnancy such as some seizure medications. The current consensus among scientists is that the ASDs comprise a complex and mixed group of disorders that can have many differing causes, biological processes and clinical presentations and outcomes. Both genetics and environmental factors may play a role.

Currently, there are no reliable biological markers, including laboratory tests or imaging studies, to confirm a diagnosis with certainty. A number of reliable and validated "gold standard" clinical assessment tools are available. By definition, the disorder, observed clinically before three years of age, involves impaired social interaction, delayed and disordered communication/language and isolated areas of interest as its core features. Additional symptoms can include repetitive behaviors, unusual sensitivities to sound, touch and odors, poor eye contact, difficulty with both fine and gross motor skills and atypical learning styles to name a few. Approximately 50 percent of ASD individuals are non-verbal. Many of these persons express themselves through the use of modern technical devices. Early identification and intervention has had a positive impact on developmental outcomes.

While we have made a good deal of progress, many challenges remain. One of the more urgent challenges is the growing number of ASD individuals who are about to reach adulthood or who are already in the adult world. The challenges involve identifying and providing appropriate housing in the community with similar and compatible peers. Varying levels of supervision may be needed, as well as the identification of and training for meaningful and productive employment, and opportunities for recreational and social support systems. Our current medical care system is not adequately prepared for these adults and many of our primary care and specialty physicians have had little or no experience in working with this population. While many ASD adults can and do have the same day to day health care issues as other persons of similar age and sex, their symptoms may appear in unexpected ways, ways that the average physician may have difficulty diagnosing, particularly in those individuals who are non-verbal.

Progress is being made in basic science and clinical research, in giving ASD individuals a better quality of life and in helping the next generation of ASD children achieve better developmental outcomes. But more needs to be done with respect to research into causes and treatments. In this context we need to be mindful of the needs of the growing population of teens and, as mentioned earlier, adults. Happily, some businesses have taken a proactive role in developing employment opportunities for this population. But we are just at the beginning. More specialized educational and vocational programs are and will be needed.

The disorder with no known cause or cure continues to cost us money.

Oct 18, 2013, OC Register: Insurance coverage of autism: by Shelley Hendrix

Shelley Hendrix is the director of grassroots development for Autism Speaks. Shelley's son, Liam, was diagnosed with autism at the age of two in 1998.

Many parents buy health insurance to cover their kids should they need medical care. They regularly pay their premiums. But, despite your investment in this supposed security, imagine you discover your child is denied needed medical care simply because they have autism. Imagine discovering that treatments are not covered or only partially covered. It's even worse for low- and moderate-income families with children with autism who lack insurance or access to Medicaid, as these treatments can cost upwards of $75,000 per year.

Autism is the nation's fastest growing developmental disability. It is a complex neurobiological condition impairing a child's behavior, social interactions and ability to communicate. It is diagnosed by a physician and treated by medical professionals.

Although it affects 1 in every 88 children nationwide on average, autism was historically excluded from most health care policies until 2007 when the landscape changed. A fast-growing movement led by Autism Speaks, the nation's largest autism organization co-founded by Bob and Suzanne Wright, worked with others to reform state laws to improve access for people with autism. To date, 34 states have enacted laws requiring some form of coverage. . . .

The good news is that the landscape is changing for hundreds of thousands of people with autism across the country. In addition to the 34 states with reform laws on the books, recent legal victories requiring Medicaid to cover autism treatment in Florida and Louisiana are encouraging.

Getting Medicaid to adopt these same benchmark principles can prove more difficult than changing private health care regulations because the program is funded through a partnership between the states and Federal Government. Only a handful of states are even beginning to meet this standard of care through their Medicaid programs ... but it's a start.

States where the laws have passed are lowering taxpayer costs for special education and other support services while developing thousands of new, meaningful jobs in care delivery. Most importantly, the children who now have access to care have an improved chance to grow up and lead more independent lives, hopefully becoming taxpayers themselves one day.

Congress needs to reform federally regulated health plans offered by large employers to require coverage of autism. We need to continue to press for coverage equality in all states because our 1 in 88 can't wait anymore.

William Thompson describes how his normal two year old regressed into autism.  Suddenly, "for no apparent reason he starts smashing his head against tables and walls, screaming uncontrollably for hours at a time and acting out in ways you never imagined possible." 

Parents are working to provide for their children.  They call for early diagnosing and treatment.

Oct 18, 2013, OC Register: Private philanthropy vita to health care system: By Bill & Nancy Thompson

William Thompson is retired CEO of PIMCO. William and Nancy Thompson are founders of Autism Centers in Missouri & California.

Imagine for the first two years of his life, your toddler behaves normally. Then, for no apparent reason he starts smashing his head against tables and walls, screaming uncontrollably for hours at a time and acting out in ways you never imagined possible.

These are among the terrible behavioral issues facing 1 in 88 children today who are diagnosed with autism spectrum disorder. It is four times more likely in boys than girls. And the lifelong disorder does not just impact children. It rips apart families.

Private philanthropy is an indispensable part of the health care landscape. It is crucial to maintaining top quality patient care, offer state of the art technology, and to attract the very best medical and scientific talent. Everything from cancer research to childhood diabetes, to AIDS drugs and to tuberculosis care in the developing world has been boosted by private money from foundations and generous individuals.

Nancy and I founded the Thompson Center for Autism in 2005 at my alma mater, the University of Missouri. We were hearing from friends and employees who were enduring this terrible condition with their kids. Our goal was to fund comprehensive clinical services to treat these kids, conduct research into causes, and educate the entire community to make a difference in the lives of children and families affected by autism spectrum disorders. Over these past eight years we have seen remarkable improvement in thousands of children - and in the understanding and support of their families.

Recently, Nancy and I were privileged to announce the first of its kind public/private partnership between the Thompson Family Foundation and the Children and Families Commission of Orange County to fund the Center for Autism and Neurodevelopmental Disorders in Southern California.
For the first time ever UCI, Chapman and CHOC will bring together the best medical minds and scientific talent to provide hope and help to children and families right here in our community. 
The leadership reads like a superstar's line-up: the new comprehensive clinical care facility will be directed by pediatric neurologist, Dr. Joseph Donnelly, founder of 'For OC Kids.' The multidisciplinary research effort at UCI exploring causes will be led by geneticist, Dr. Jay Gargus. And the educational and public community involvement will be led by Dr. Don Cardinal of Chapman University. The overall director of the Center will be Dr. Ralph Clayman, dean of the UCI School of Medicine.

I cannot express how excited we are to be invested in this new Autism Center. It has already attracted national recognition for its unique partnership and potential to bring services to one of the largest regions in the country. Prior to its creation, nothing of its kind existed in Southern California.

And because early diagnosis and treatment of these kids is so crucial to success, we will now be able to reach a larger number of children and families in our area with an expectation for many positive outcomes.

In my days at PIMCO, celebrating clients' victories was a great motivator. Our new Autism Center will impact hundreds of children and their families each day. For us and those working at the Center, these will represent even greater special victories!

Here  Thomas Insel, one of the leading autism officials in the country, talks about autism. There are so many unknowns about autism--including what exactly autism is.  Insel is still not sure sure if more kids really do have autism.   He's also not sure what the real rate is, especially among adults. But he's not worried about autism and tells us that "these are exciting times in autism research."

Oct 18, 2013, OC Register: Diverse perspectives on autism: Dr. Thomas Insel

Thomas R. Insel, M.D., is director of the National Institute of Mental Health
Autism is many things. For some, autism is an illness, a neurodevelopmental disorder with deficits in social behavior (reciprocal play, eye contact) and an excess of restricted, repetitive behavior. For some, autism is an identity, marked by a different, more mechanical way of seeing the world, compared to "neurotypicals." And for others, autism is an injury due to damage caused by something in the environment.

These perspectives on autism depend partly on where you sit in the autism universe: scientists, clinicians, parents and people with the diagnosis approach autism differently. But these diverse perspectives also reflect the varied presentation of autism, which spans from a non-verbal child with severe intellectual disabilities to a successful physics teacher with poor social skills. Today we use the term autism spectrum disorder (ASD) to describe this vast range, recognizing that autism is many disorders. Indeed, for many people on the spectrum, the term "disorder" is offensive and probably inaccurate.

As a scientist leading a funding agency for autism research, I think of autism as a neurodevelopmental disorder. What do we know about autism in 2013? Autism symptoms generally emerge before age three and usually much earlier, often as language delays or lack of social engagement. Recent research suggests that autism can be detected during the first year of life, even before classic symptoms emerge. Indeed, the symptoms may be a late stage of autism. Early intervention might prevent or pre-empt some features of this disorder.

We know that autism diagnoses have become far more prevalent. Twenty years ago, autism was considered rare, with prevalence estimates of 1 in 2,000 children. Today, estimates range from 1 in 88 to as many as 1 in 55. Is this increase due to more children affected or more children detected? There is evidence that both may be true. And it is becoming increasingly apparent that ASD is not just a disorder of children. Children with autism become adults with autism; however, the disorder may be far more prevalent in adults who were not diagnosed with ASD 20 or 30 years ago when we knew much less about autism. Whatever the actual prevalence, these high numbers raise serious concerns about how we provide the services necessary for both children and adults with ASD.

What causes autism? As far as we know in 2013, there is no single gene or single environmental factor that accounts for the more than 1 million Americans with ASDs. We know that rare genetic disorders, such as Rett Syndrome, are associated with autism and that rare prenatal exposures, such as valproic acid during gestation, greatly increase the risk. There are clearly variations in the genome associated with ASD but we do not know whether these cause the disorder. Curiously, many of these seem to be spontaneous changes in the genome that are not found in either parent. Recent research reveals that all of us have these spontaneous changes - none of us has a genome that is a perfect replica of our parental genomes. But people with autism, especially those with intellectual deficits, have more of these changes.

What can be done? We know that many children with ASD will improve their social engagement with behavioral training. This is an intensive and expensive treatment, but it works to help children with ASD to attend mainstream schools and build self-confidence. Some evidence suggests that outcomes may be even better when behavioral interventions are begun before age two. Although scientists think of ASD as a neurodevelopmental disorder, there are no medications specific for social or language deficits. Repetitive, restricted behaviors may respond to medications. For many children with ASD and their parents, it is not the core symptoms but associated problems with sleep, eating or irritability that are most troubling. Thankfully, these are often more amenable to treatment than the core symptoms of social deficits and repetitive behaviors.

While there are still more questions than answers, these are exciting times in autism research. The Interagency Autism Coordinating Committee has brought together federal agencies, private foundations, parents and people with ASD to forge a research strategy. A National Database on Autism Research is fostering sharing of data and collaborations. Scientists are also making great strides at the interface of biology and engineering with new technologies that are laying the groundwork for future advances. Larger scale efforts, such as President Obama's BRAIN Initiative, promise even better tools that will eventually help to illuminate the brain workings of individuals with ASDs.

Glen and Lisa Ackerman describe what an autism diagnosis means to a family. Too much is still unknown.

Oct 18, 2013, OC Register: An unplanned journey: By Glen & Lisa Ackerman

 When a doctor says to you "your child has autism" the air leaves the room, the blood drains from your face and you feel slightly faint. It is a moment of helplessness that is almost indescribable. At least that was the feeling that overcame us when our son was diagnosed.

The emotion that follows is fear that nothing can be done. But, as we have learned, that is not the case - much can be done.

All too many parents are told that autism is a life-long condition with no known cure and that their child will eventually likely need to be placed in an institution for care. But we should not accept that autism is a life sentence nor should parents of children diagnosed with autism feel as though they have to figure it out on their own.

When our son was diagnosed with autism, we were fortunate at the time to be so ignorant about the illness that we asked one last question before leaving the doctor's office. "Our son seems very sick too. Is that part of the autism diagnosis?" It seemed odd that the autism diagnosis only covered our son's developmental, behavioral, sensory and speech issues. No discussion about the biomedical issues he was experiencing.

Thus began our quest to help our son. Our journey led us over the past 13 years to build a community of over 36,000 families (through a foundation we started called Talk About Curing Autism - TACA) that shared the same experiences and observations and were asking the same questions. Every family was eager for knowledge and answers. Each parent committed to helping their child achieve their potential.

What has emerged over the last 13 years of parents sharing information is a frame of reference for attacking a complex problem that sprawls across behavioral, medical, social, legal, therapeutic, educational, insurance, family, community and financial boundaries. . . .

New treatments are emerging all the time. In fact, as a result of a recent pending study and training funded by TACA on the use of iPads to facilitate communication, a 16 year old boy communicated to his parents for the first time. Imagine waiting 16 years to finally know what your son was thinking. This is a reminder that parents should never give up.

Our biggest lesson in this fight is that if we were going to make progress for our son and other children with similar conditions we were going to have to make it happen through determination and grit. Today, our son, who cast us on our unplanned journey after regressing into autism, is now in a regular education 10th grade class, participates on the school cross country team and is looking forward to his homecoming dance. If we had given up, as one doctor suggested, our son would be in someone else's care instead of thriving with us.

Ten stories. Experts who sound hopeful about finding answers to autism. Not one of them said that they were convinced that it was all just better diagnosing.  Yes, the numbers are real.  How much is a real increase and how much is greater awareness, no one knows for sure.  Thomas Insel, head of IACC, seems the most unsure of all. STILL--there's no reason to be alarmed.   Autism isn't such a bad thing.  Kids aren't really suffering.  Answers will come.  We just need time.

Hertz-Picciotto has no real answers, despite this she claims, "Today, this research is burgeoning and there is hope that strategies to actually prevent ASD or reduce its severity are on the horizon."
For me, I don't share the hope of Dr. Rossignol in the first article and I see nothing in this coverage that could possibly explain why his two sons both have autism.

While environmental toxins are mentioned---THERE IS NOT ONE WORD ABOUT THE LINK TO VACCINES--not one. 

 I'm left to ponder Martha Herbert's last sentence: "So really, everyone is right about autism - but we all need to pull together because the only way anyone is wrong is thinking that theirs is the only right approach."

So much for ever coming to any conclusions about autism.

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As I headed for the computer to read Age of Autism , a few minutes ago, a memory from about 30 years ago came back to me- A five year old boy of brilliant mind saying, with a drawl, "Well- If you believe that you're gullible" Very appropriate for all the above politically correct autism-speak above. If that is the state of our doctors and scientists, it's every parent for him or herself. They appear to only exist to confuse us. Is there a connection here with the alien abductions I have been watching lately on tv? Im trying to understand this.

Why did you not mention Prof. Leon's article published alongside the other articles mentioned?

He has a very interesting perspective on what can be done to help children with autism, especially the older ones who may have missed the "early diagnosis boat."

http://www.apa.org/news/press/releases/2013/05/autism-treatment.aspx

Well, the band just marches on doesn't it. The new mommy fb group, the one that has to be closed because the pro vax bullies are on it like stink on " ". Everyday, I read about a new member of the vax injured club. Families w/ the older kids more vax'd and more damaged than the younger ones. There is a growing population of vax'd, partially vax'd and un vax'd in the same family. The answers reside in these families. Honestly, I'd have to be guaranteed anonymity, immunity, and maybe even a big phat check to participate in such a study.

Autism is a neurological disorder. Therefore the brain should be the focus of research. Language development is the most serious impairment. Factors that interfere with brain systems essential for language development should be most important to investigate.

Low APGAR scores, preterm delivery, and fetal distress were mentioned by Irva Hert-Picciotto. With so much in the news lately about concussion from sports injuries, what about concussion suffered during a difficult birth? Head injury and anoxia were the cause of my son’s autism.

I will keep trying to point out the damage caused by asphyxia at birth, reported in the October 1969 issue of the Scientific American. The damage was most prominent in the auditory pathway. And, how do children learn to speak??? My son at age 50 still has an auditory processing disorder, though he now speaks and reads quite well.

The elite researchers should be listening to and engaging in conversation with parents. Instead they arrogantly dismiss what we have to say, and they are getting nowhere with their effete tiddlywinks efforts to promote genetics and eugenic ideas.

As an Orange County resident and subscriber to the Register, I was excited to see a whole section of the paper devoted to this topic. However as I scanned the articles, I was disappointed to see the same old, same old "better diagnosis vs. true increase," etc. topics covered. It seemed more of an attempt to distract from the real issue than to accurately cover it. Today's paper had a front page article titled "Immunization Divide," in which they present an argument that those in wealthier areas are opting out of vaccinating their children more often than poorer areas. I feel like the Oct. 18 articles were laying the groundwork for this story.

http://www.ocregister.com/articles/parents-534104-vaccines-health.html#article-comments

Kudos to the doc who is asking for more real research into autism. I am starving for more medical research to help children with autism. I feel like we have just scratched the surface of how to heal the gut and there is so much more we could do to help more children if we only knew how. But there are not enough efforts to really look so children continue to suffer while we hear the stories of older mothers etc. repeated over and over.

"How do they know? Because they say so."

Although it isn't funny, thank you for the laugh, Bob. Would make a great t-shirt - Front: How do they know vaccines are safe and effective? Back: Because they say so." :o)

Re the peanut candy, also beware the GMO content of all the candy - unless it specifically states that the sugar is from sugar cane, the sugar is likely from GM sugar beets, the corn syrup from GM round up ready corn, and who knows what else. Sorry to be depressing. I didn't participate in Halloween last year because I didn't want to pass out poison, but this year I did find some individually wrapped Halloween sized portions of organic gummy bears. Until we win the GMO war, that is how it will have to be. Remember the good old days when we just had to worry about artificial colors, flavors and preservatives?

I keep my own private "stash" of snicker bars, last night I gave out peanut free candy until the end, at which time I had to "share" mine. Before dropping them into the bag I asked, "any peanut allergies?"..thank heavens it was the end, as within the last 15 kids there were two that refused !
Of course our environment has tweaked our genes, with pesticides, particulate pollution and more, I believe these mitochondrial tweaks have left our kids susceptible to the trigger, that trigger being vaccines. ..in it's absence they would most likely not wind up on the spectrum. Having said that, there are always a few rare cases , yet on investigation it's often found that mom had more than her share of vaccines and rhogam. Our family's first experience with autism was with my nephew..my sister walked across a freshly sprayed campus, sat in saturated shoes all day, went home, nursed the baby, took the baby for shots, got an mmr for herself and the baby , she developed toxic neuropathy, he developed toxic encephalopathy, he became autistic. What were the fungicides on that turf? Did they contain mercury in 1992? A lot of questions, yet, because it wasn't a sudden hit, but more of a slow progression over weeks, no connections were ever made.

Everything causes autism except what parents have observed to cause autism. Got it.

Anne conlcudes:

"While environmental toxins are mentioned---THERE IS NOT ONE WORD ABOUT THE LINK TO VACCINES--not one."

Gee .. do yuh think .. just maybe .. an independent scientific study of "vaccinated v. unvaccinated" populations would be useful to finally "rule out" vaccines as being a major contributor to the dramatic, inexplicable .. increase in autism .. worldwide?

Nah .. couldn't be useful .. because .. everyone who matters .. CDC, HHS, FDA, Supreme Court, etc .. knows the "benefits of vaccines far outweighs the risks". How do they know? Because they say so.

Common sense dictates these "experts" should be publicly expressing strong support for pending federal legislation that seeks to fund exactly such a critical study .. if for no other reason than for those "experts" to provide clear and convincing evidence their vaccines are as safe as they insist they are.

Off topic .. but .. yesterday was Halloween .. and .. we had about 70 "trick or treat" kids, dressed in very creative costumes .. visit our house. My wife was handing out the "treats" .. and .. at least four of those 70 kids .. all from different groups .. refused Baby Ruth candy bars .. because .. they are allergic to peanuts.

Like autism .. increasing peanut allergies .. is another "environmental mystery" today's generation of parents and children must learn to accept.

Indeed, I don't ever remember kids being diagnosed autistic or allergic to peanuts when I was a kid? However, this is the FIRST year that awareness of peanut allergies has become an issue for US.

So .. next year .. when we buy our "treats" for Halloween .. WE will AVOID anything containing peanuts .. thereby doing our part to help these children have a "safe and healthy" Halloween like children have had for generations past.

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