New high in U.S. autism rates inspires renewed debate
NEW YORK | Thu Mar 29, 2012 1:46pm EDT
(Reuters) – About one in 88 children in the United States has autism or a related disorder, the highest estimate to date and one that is sure to revive a national argument over how the condition is diagnosed and treated.
The estimate released on Thursday by the Centers for Disease Control and Prevention represents an overall increase of about 25 percent since the last analysis in 2006 and a near-doubling of the rate reported in 2002.
Among boys, the rate of autism spectrum disorders is one in 54, almost five times that of girls, in whom the rate is one in 252.
“One thing the data tells us with certainty – there are many children and families who need help,” CDC Director Thomas Frieden said at a press conference.
The reported spike in the prevalence of autism and related disorders raised questions about whether it is real or an artifact of greater awareness that has led parents, teachers, and even health-care providers to see symptoms of autism in children who would not have received the diagnosis a generation ago.
If it is real, that suggests that some change in the environment might be responsible. In recent years suspicion has focused on everything from mercury, a known neurotoxin, in air and food, to the increasing age of new mothers and fathers.
There is a good possibility that much of the reported increase in the prevalence of autism is illusory, however. When asked about this during the news conference, CDC’s Frieden pointed out that “doctors have gotten better at diagnosing the condition and communities have gotten better at providing services, so I think we can say it is possible that the increase is the result of better detection.”
Advocates for people with autism nevertheless seized on the new data to call for more research to identify the causes of autism-spectrum disorder and for more services for those affected by it.
“This is a national emergency and it’s time for a national strategy,” said Mark Roithmayr, president of the research and advocacy group Autism Speaks. He called for a “national training service corps” of therapists, caregivers, teachers and others who are trained to help children with autism.
“Inevitably when these statistics come out, the question is, what is driving the increase?” said Roithmayr. Better diagnoses, broader diagnostic criteria and higher awareness, he estimated, account for about half the reported increase.
EXAMINING RECORDS
The new analysis from the CDC comes from the Autism and Developmental Disabilities Monitoring Network, which currently operates at sites in 14 states.
To determine whether a child has autism or a related disorder, what CDC calls “clinician reviewers” examined the medical and school records of 337,093 eight-year-olds in those states in 2008 and conducted screening. Children whose records included either an explicit notation of autism-spectrum disorder or descriptions of behavior consistent with it were counted as falling on the autism spectrum.
The prevalence of autism in the states monitored by CDC varied widely, from a high of one in 47 in Utah to one in 210 in Alabama. Experts said that variation likely reflected differences in awareness of the disorder among parents, teachers and even physicians, as well as differences in the availability of services, rather than any true “hot spots” of autism.
Autism spectrum disorders are marked by a suite of symptoms, all arising from atypical brain development that results in problems with socialization, communication, and behavior.
Although the disorder can be mild or severe, in general children with autism have difficulty communicating and making friends. Many find it painful to look other people in the eyes, which impairs their ability to understand what others are thinking and feeling.
There is no brain-imaging test for autism, let alone a blood test or other rigorously objective diagnostic. Instead, physicians determine whether someone fits the criteria laid out in the American Psychiatric Association’s Diagnostic and Statistical Manual, or DSM.
The manual has undergone significant changes over the years, including in the diagnostic criteria for autism. In its current version, someone must fit at least eight of 16 criteria, including symptoms involving social interaction, communication, and repetitive or restricted behaviors and interests.
The previous version was stricter, describing one diagnostic criterion as “a pervasive lack of responsiveness to other people.” In the current manual, that became “a lack of spontaneous seeking to share …. achievements with other people” and friendships that appear less sophisticated than the norm for a child’s age.
The earlier manual also required “gross deficits in language development” and “peculiar speech patterns” for a diagnosis, while the current one lists difficulty “sustain(ing) a conversation” or “lack of varied . . . social imitative play.”
Morton Ann Gernsbacher, a professor of psychology and autism researcher at the University of Wisconsin, Madison, and others have cited these changes to question the reality of the reported autism increase.
ENVIRONMENTAL FACTORS
Scientists had long estimated that 90 percent of autism risk was genetic and 10 percent reflected environmental factors. But a 2011 study of twins by scientists at Stanford University concluded that genes account for 38 percent of autism risk and environmental factors 62 percent.
Exactly what those factors are, however, remains the subject of intense research, with two large studies funded by the National Institutes of Health examining everything from what the mother of a child with autism ate during her pregnancy to what cleaners were in the house and what pollutants were in the dust.
“There is not a clear front-runner” among possible environmental causes of autism, said Craig Newschaffer, chair of the Department of Epidemiology and Biostatistics at Drexel University School of Public Health and lead investigator of one of the NIH-sponsored studies.
There is, however, what he called “good evidence” that any environmental culprit is present during the second or third trimester, the peak of synapse formation. Scientists believe that faulty brain wiring underlies autism.
They have also focused on factors that have changed in the last two decades, including pregnant women’s use of certain antidepressants, increasing parental age and the rise in pre-term births and low-birth weight babies, said Newschaffer.
Even as experts disagree on whether the reported increase in the prevalence is real and what causes the disorder, there is a clear consensus that “the earlier a child is diagnosed the more he will benefit from interventions,” Dr. Coleen Boyle, director of CDC’s National Center on Birth Defects and Developmental Disabilities said during the news conference.
Unfortunately, the nation has made slim progress on that front. In 2006, the median age of diagnosis was four-and-a-half years. In 2008 it was four years – an age when experts say is too late for interventions to do all the good they would if begun earlier.
The American Academy of Pediatrics recommends that children be screened for autism at 18 months and again at 24 months. Parents should look for symptoms such as failing to point, not making eye contact, and being slow to develop language, said APA’s Dr. Susan Hyman.
“It is critical to act quickly if there is a concern about autism,” Frieden said.
Research funded by Autism Speaks found that autism costs the United States $126 billion annually. That reflects the cost of healthcare, special education and other services, as well as loss of productivity, underemployment and unemployment among adults with autism.
(Reporting by Sharon Begley; Editing by Michele Gershberg and Philip Barbara)
http://www.reuters.com/article/2012/03/29/us-autism-idUSBRE82S0P320120329
Side Effects: the bad, the bad, and the definitely-not-so-good-looking
Or how drugged hallucinations changed my life. No, this is not what you think. And if you weren’t thinking it, it’s not that either.
They were there, in the room. I was sure of it. I had woken up at 3.00 a.m., still coughing, still feeling ill, and I could see the shadowy evil beings flitting around in the room. I felt awful. My head was pounding, my heart was banging against my ribs, I felt unbearably hot and was convinced I was going to die. I wasn’t even sure I would make it to the emergency room. I wasn’t even sure I would make it to the phone.
Amazing what a few teaspoons of cough medicine can do, innit?
I was 22 years old. I didn’t even know I possessed a heart – it had never made its presence so painfully obvious before. This was my first brush with that complex modern ailment known as “Side Effects” – although sadly not my last.
(If you read my Previous Post, you will know that Effective Use of Capital Letters will turn any mere opinion into an Educated Diagnosis. Not to mention the use of acronyms. So Now You Know (NYK).)
At that time I was singing in a band (yes! Tis true!) and had come down with a cough two days before a performance. I went into a local pharmacy on Jaffa Street and wheezed at the pharmacist “I need something strong… and I need it now…”. No side effects were mentioned, although after the episode I did fish the encrypted leaflet with Very Small Writing out of the bin, and saw words like “hallucinations, palpitations, fever…”
Another scenario was reported by a friend who received medication for a hyperthyroid condition. (That’s the kind that makes you actually lose weight – before being outlawed the medications were used in weight-loss preparations that were sold over-the-counter. Nice bit of trivia for you. You’re welcome.)
A week or two after she started taking the medication (prescribed with the ominous commandment: “Thou shallt take this medication for the rest of your life, lest ye DIE”), she began to experience debilitating rashes. She went to the doctor. Prescription: Anti-Histamines.
Then she developed a strange case of roving arthritis. Every day a joint in her body would decide it didn’t work. Every day it was a different joint. After going through hands, knees, jaw, shoulders and a totally debilitating encounter with a hip joint that declared independence, she went to the doctor. Diagnosis: psychosomatic (my friend thought that’s what the raised doctoral eyebrow implied). Prescription: Ibuprofen.
When the specialist discovered what was going on he hit the roof, furious with the other prescribing doctors and the patient, as he showed them that these side effects were all detailed in the Holy Writ (i.e. the leaflet). My friend described the experience as “educational”…
I would say 70-80% of the people who come to me for treatment are suffering from side effects of medications – sometimes more serious, sometimes less. (I probably would say this a lot – potential side effect: it may get boring. Doesn’t make it any less true though.)
The side effects can often be insidious and cumulative – at the beginning you seem to be tolerating the drug well, but then gradually you start developing problems. This only becomes clear when you plot a timeline – marking when you started having symptoms and when you started taking medications.
This doesn’t exclude “natural” medicine. If you have been taking some herbal tinctures and supplements, or self-medicating on any homeopathic remedies without professional advice, side effects can result. Recently I was consulted about a case of vertigo – when we looked into it, the vertigo began after the patient was four weeks into a six-week course of herbal tinctures prescribed over the counter by a nutritionist at a pharmacy. She stopped the dosing…the vertigo abated and disappeared. Nuff said.
“But you’re exaggerating!” people say… “Don’t you know they only write that stuff in the leaflet for CYA purposes?” (See previous post comments for generous Hebrew translation of CYA…)
“Anyway,” continue the Wise Ones, “it says here Stomach Ache. It doesn’t say anything about Stomach Ache and Vomiting of Green Noxious Substance…”
O, Wise Ones – do I have news for you! Plus an almost unbearable urge to say “I told you so,” which I’ll try to restrain. A recent blog on PRWeb enlightens us that “New research on Drug Side Effects done at Stanford School of Medicine has discovered nearly 5 times the 70 or so potential reactions that are listed on the average drug insert.”
This research uncovered the following amazing, totally counter-intuitive, illogical discovery (yes, I jest…with intense sarcasm…), and I quote:
“…clinical trials could not possibly foresee all of the potential effects the drug could have on individuals with different underlying conditions and medical histories. Many times, the most serious side effects are not acknowledged until after the medicine has been on the market for quite some time.”
Oh really…and in a paraphrase of the original… the most serious side effects are not acknowledged until after patients have been suffering from them for quite some time…hands up if you’ve experienced that one… whoa, not all at once…
But it was tested extensively on animals, we are told, before we gave it to humans… this will be the subject of a future post, but with all due respect to those who relate to their pets referring to themselves as “Mummy” and “Daddy” and viral youtube videos of pets talking, they are not human. That’s the way it is. They would probably consider it an insult to be seen as such. If you get confused between the two there are usually extreme social repercussions. I’ll write about this in a future post. Look out for it and prepare the hate mail.
Testing on animals does not ensure safety in humans. Testing on humans, by the way, does not ensure safety in animals. There’s a thought. Also to be followed up on. Yes, I dangle participles, sue me…
The most significant side effect of all medications takes place even before the suffering patient pulls out his wallet. It seems to happen simultaneously with the Handing Over of the Prescription, a ritual that can reach almost epic proportions in its evocation of salvation from earthly ills. This side effect is called Misplaced Belief that there will be no side effects, and if there are, it doesn’t matter because – again the capital letters – this medicine is Good For You. In some cases it can even Save Your Life.
There are many aspects regarding the nature of prescribing and the nature of drug testing which are involved here, and which are too numerous and complex to mention within this post.
However, the question stands: what’s a suffering sick person to do? Here are some suggestions:
1. If you’re having symptoms after taking a prescription drug, badger your doctor about it. Get on your doctor’s nerves. Take your health seriously enough to do this – cumulative side effects can get nasty. See if there’s an alternative. Do this before the side effect of losing your marbles sets in – and it can be a side effect of many drugs (a.k.a. dementia, confusion, memory loss, forgetfulness). If you don’t, you will be treated with disdain and raised doctoral eyebrows when you complain about anything.
2. NEVER accept any kind of medication – conventional or alternative – from someone who doesn’t have the best qualifications to prescribe it. Don’t take recommendations for conventional medications from alternative prescribers or medical students, don’t take recommendations for homeopathic or herbal medicines from conventional doctors, don’t buy gefilte fish in a pasta restaurant…
3. Educate yourself. If you’ve been prescribed a medication, find out about it. Check reliable sources. I use the National Health Institute’s Medline drugs site most of the time. When you check, you will also see if there are any FDA warnings on the drug in question – something many doctors may not be updated on when they make out the prescription.
A young patient was brought in suffering from heavy-duty behavioural issues. A couple of minutes investigation of his medications on Medline drugs produced the following: a drug he was taking daily to prevent Asthma which was not totally necessary for him at that stage carried an FDA warning that it had been found to produce behavioural changes in children, to the extent of suicidal behaviour.
And so, with a nod to Dorothy Parker (for the original click here):
Medical Résumé
Injections pain you;
Enemas are damp;
Acids stain you;
And drugs cause cramp.
The good stuff ain’t lawful;
Tourniquets give;
Laughing gas smells awful;
You might as well live.
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