By Anne Dachel
Most of us have observed the appearance of endless new studies on autism. They’re announced with lots of fanfare by the media, but the information contained in the details is typically much different from what the headlines seem to say. This month was no exception.
At the beginning of February came the news that scientists link maternal age to an increased risk for autism based on a study from the UC-Davis.
The NBC station in San Diego put out the story Older Moms at Higher Risk of Having Autistic Children on Feb 9. In it we read, “A woman’s chance of having a child with autism increases as she ages. That’s according to a new study released today.”
The ordinary reader might think that researchers have learned something really critical about autism, the actual story however tells us nothing significant. Dr. Bruce Hensel reported that they looked at 5.6 million babies born in California and found that if the mother was older than 40 the risk of autism was about 50 percent more likely than for a mother in her twenties, however, “the risk is still small no matter what a woman’s age.”
“Researchers who studied records of all births occurring in California in the 1990s found that the risk of having a child with autism was significantly higher when the mother was older, regardless of the father's age, except when the mother was younger, the risk was also higher if the father were older.”
What could any of this possibly mean for the vast majority of parents of autistic children who typically gave birth in their 20s and 30s?
No matter, the following news outlets covered it:
New York Daily News
New York Times
The other big study out this past month looked at when the symptoms of autism first appear. Again we’re told that the research wasn’t looking for causation and that it was also from the UC-Davis.
The study concluded that all the doctors taking credit for better diagnosing still don’t have it right. While most autism is recognized in children around 18 months to two years of age, the truth is, it’s evident much earlier, actually around one year. Still, these same children appear to be typically developing at six months of age.
Here’s what the stories told us:
Feb 16 McClatchy Washington Bureau: UC-Davis study reveals age when autism appears
(HERE) “The signs of autism are not present at 6 months but show up gradually later in an infant's first year, a UC Davis study reveals.
“Contrary to what autism experts once thought, signs of the disorder appear later in an infant's first year of life. Most babies are born apparently normal before a gradual decline begins between 6 and 12 months of age.”
“The study showed that by one year, social and communication behavior of autistic children had dramatically deteriorated.”
Feb 18 Science Daily: Autism's Earliest Symptoms Not Evident in Children Under 6 Months, Study Finds (HERE) “Researchers conducted the study over five years by painstakingly counting each instance of smiling, babbling and eye contact during examinations until the children were 3. They found that by 12 months the two groups' development had diverged significantly. Intentional social and communicative behavior among children developing normally increased while among infants later diagnosed with autism it decreased dramatically.”
" ‘This study provides an answer to when the first behavioral signs of autism become evident,’ said Sally Ozonoff, the study's lead author, a professor of psychiatry and behavioral sciences and a researcher with the UC Davis MIND Institute. ‘Contrary to what we used to think, the behavioral signs of autism appear later in the first year of life for most children with autism. Most babies are born looking relatively normal in terms of their social abilities but then, through a process of gradual decline in social responsiveness, the symptoms of autism begin to emerge between 6 and 12 months of age.’ "
“The researchers found that there were few discernable differences between the two groups at the outset but that after six months, 86 percent of the infants who developed autism showed declines in social communication that were outside the range for typical development. ‘After six months,’ the study found, ‘the autism spectrum disorder group showed a rapid decline in eye contact, social smiling, and examiner-rated social responsiveness.’ Group differences were significant by 12 months in eye contact and social smiling and all other measures by 18 months, the study found.”
‘Autism has a slow, gradual onset of symptoms, rather than a very abrupt loss of skills.’
“Ozonoff said that the study does not address the etiology of autism or causality. In this study, the infants who participated were at high risk due to having strong family histories of autism, suggesting that genetics play a major role in the later autism diagnoses, despite the fact that their symptoms were not apparent at birth.”
“Researchers say the study is noteworthy because of the accuracy and precision of observation during lab visits.“
The LA Times had the piece, Autism signs appear in babies' first year, but parents don't notice, study finds (HERE.) They used the study findings to announce that parents who claim that there was a noticeable change in their children are wrong.
“But it also cast doubt on the accuracy of parents' reports that their baby's descent into autism was sudden and dramatic.”
Feb 22 Sacramento Bee: New study reveals age when autism appears
(HERE) "‘Until now, research has relied on asking parents when their child reached developmental milestones,’ said Ozonoff. ‘But that can be really difficult to recall.’ In addition, parents who make video recordings of their children often turn off the camera when behavior is poor, exactly when autistic symptoms may appear, a MIND Institute news release states.”
Two new studies, one 10 years in the making and the other 5 years, essentially tell us nothing. Maybe that’s all they’re intended to do. It would certainly seem strange if scientists weren’t doing something to address a problem affecting one percent of children.
Someone somewhere should be looking for answers. The issue of causation is so controversial that no one wants to go near it. The stories on parental age and ones on the appearance of the signs of autism purposely ignore the topic of what’s causing it. While experts acknowledge that there may be “environmental factors” related to autism, no one seems interested in actually looking for any. Both studies give us idea that kids are born with autism, we just don’t see the signs at first and that autism is genetic.
The study on identifying the signs earlier was a very scary look at autism research. All kinds of reports in the news on this had the statement, “The symptoms of autism are not present at 6 months.” But they’re noticeable at 12 months. And no one was at all concerned about what happened to change these children.
We’re told that researchers were “painstakingly counting each instance of smiling, babbling and eye contact during examinations until the children were 3.” These researchers evidently watched children regress into autism and were only focused on when the signs of autism first appeared--nothing more.
Twenty-three years ago when my son was born no one told me to watch to see if he suddenly lost skills. Everyone seemed clueless, much like they still are today. These researchers seem satisfied to simply observe children being lost to the autism epidemic and do nothing to stop it.
Are we to assume it's typical and acceptable for children to regress? This study is absolute proof that no one really wants to do anything to address autism. Furthermore, studies like these send the clear message to the public that autism isn’t anything to really worry about. It’s a curiosity. It’s something that scientists just haven’t been to figure out yet, but they’re working on it. The press never uses words like “epidemic” or “crisis” when speaking about autism. Neither do scientists or health officials. They also never give the public the true picture of the suffering of countless children living with autism and certainly there’s no alarm over the impending disaster we’ll face as these children age out into adulthood.
Recent information that I’ve come across never seems to factor into these long-term studies.
Feb 21 Bloomington Alternative: Life on the edge of the autism epidemic (HERE)
“According to the Indiana Department of Education, only 136 Hoosier children received special education for autism in 1990. Over the past 17 years, the number has ballooned to 9,236.”
The father of a boy with autism reported that his son “was on a waiting list 11 years before receiving a Medicaid Autism Waiver that qualifies him for health care provided by the state.” He added, ‘I hear today it's 30 years in Indiana on the waiting list.’
“Given the magnitude of the autism epidemic and the limited few who can get the Autism Waiver, Marty fears for those families not as blessed as his.
"’What do they do?’ he asks. ‘What are they going to do?’"
I also heard from a fellow parent who once lived in Indiana. Here’s what she wrote about what is happening in that state.
“I used to live in Indiana and my son was place on a waiting list at that age of 2. That was 12 years ago. At the time he was placed on the list there were less than 400 people waiting in the entire state. And at that time the Indiana Autism Commission was concerned about the numbers going up so fast and so high. Wonder what they think now? At the time, Indiana had 200 slots for their autism waiver.”
“Had we not moved to Ohio he would have been targeted 3 or 4 years ago. Now it’s a 30 year wait? What happened? We can’t afford all this better diagnosis. Now we sit at the bottom of a list [in Ohio] waiting for any kind of help we can get. It’s never going to come. We seem to be on our own. I know we are not alone. Things are grim everywhere.
“I recently went to my first Waiver related meeting here in Ohio . I signed my son up for the waiver programs as soon as we moved here. 5 years later we are still waiting for something- anything. Once a year I receive a letter telling me where he is on the wait list. This number means nothing for people are jumping all over the place based on need or emergency situations that arise.
“There was a gentleman from the ARC of Ohio who spoke. He said there are currently 30,000 Ohioans waiting for a disability waiver right now. I have no idea how many people waiting have autism since Ohio does not have an autism specific waiver. Interesting he mentioned that when Governor Taft was in Office (Gov. Strickland has been governor for 4 years since, and is running for his second term- just to show you how slowly they are working) he promised that Ohio would develop an autism waiver. Well, they are still figuring out the specifics of this waiver- one thing they did decide is it will not be just for autism- they are calling it the ‘future’s waiver.’ They are still ironing the details, but it looks as if it will have an age cap- only will be available to children 13 and under, with severe behavior issues and get this there will only be 50 slots and it will be based on a LOTTERY system.”
Whenever I read about state numbers and the critical lack of services that indicate the real nightmare of autism, the more pathetic and deceptive studies like the ones I mentioned appear. When the true extent of the damage done to a generation of children is finally realized, we’ll need to honestly look at the years of time and millions of dollars spent on research designed to tell us nothing,
Anne Dachel is Media Editor of Age of Autism.
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