Autism—Another Epidemic?

Does your 6-month old make eye contact?  Does your 8-month old follow your gaze? Does he mimic your facial expression if you show fear, anger or pleasure?

If you answered “no” to these questions, the American Academy of Pediatricians (AAP) wants you to know that your child might be suffering from Autism Spectrum Disorder (ASD). Just two weeks ago the Academy sounded the alarm in a report calling for screening of children under two, listing signs of autism which pediatricians and parents should watch for. The report appeared in the November issue of the journal Pediatrics and on the group's website.

At one time, autism was considered a rare disease. When I hear the word, I think of Dustin Hoffman’s brilliant performance in “Rain Man,” where he acts the part of an obsessive-compulsive idiot savant, imprisoned in his own tiny world of repetitive behavior. Rain Man is almost incapable of social interaction; it seems clear that he is afflicted with an uncommon disorder. But the Academy’s report begins by warning that, today, autism is not rare. One out of 150 children suffers from ASD, we are told. That’s why it is important to begin screening for the disease at an early age.

According to the AAP, doctors and parents should keep an eye on even the youngest children. For example, the report explains that “turning consistently to respond to one’s own name is an early skill that parents should expect to see in an 8 to 10-month old.”  The absence of this skill is said to be an autism warning sign. Other signs of trouble include “lack of warm, joyful expressions” when the parent points to an object and the baby gazes at it.  And by 9 months, says the report, the baby should be babbling—otherwise parents should be worried.

The AAP offers a brochure, entitled “Is Your One-Year-Old Communicating with You?”, developed to help raise parent and physician awareness and to promote recognition of ASD symptoms before 18 months of age. (The AAP advises that pediatricians give the brochure all parents at the child’s 9 or 12-month visit.) Different children “present” differently, the report observes, but some particularly vigilant parents may still be able to “perceive that their child is ‘different’ during the first few months of life.”

As your child grows older, the signs of autism grow more complicated: “Although most children, at some time during their early development, form attachments with a stuffed animal, special pillow, or blanket, children with ASDs may prefer hard items (ballpoint pens, flashlight, keys, action figures, etc),” the AAP observes. Parents also should be wary of early signs of independence. “Some parents will note that their child seems overly ‘independent’ because, rather than ask for desired objects, he uses advanced motor skills to obtain them himself (i.e. moving a stool to a counter top to obtain an object at an age younger than typically expected.)”

Finally, the report suggests that parents should be wary if a child shows exceptional talent in one area, while being slow to develop in others: “One unique characteristic of ASDs is the ‘unevenness’ of skills,” the report warns. “Abilities may be significantly delayed in some areas of development yet ‘advanced’ in others, often because of exceptional focusing, memory, calculation, music, or art abilities. They may be labeled as ‘splinter skills’ when they serve no purpose in day-to-day life and do not improve functional outcomes.” Though the report does offer a sliver of hope:  “Rarely, highly developed talents or savant skills may promote a vocation that provides financial independence and, occasionally, national recognition.”

Worrisome as all this may sound, perhaps parents can take some relief in the fact that, according to the Academy, “surveillance” of a child at an early age is simply a precaution. Not all children who display a few symptoms are autistic, and so parents shouldn’t “over-react” to quirky behavior.

Are they kidding? Of course parents are worried, says Bryna Siegel, professor of child and adolescent psychiatry and director of the Autism Clinic at the University of California, San Francisco. As soon as news of the AAP report calling for stepped-up autism screening broke, experts such as Siegel began to get calls.  “Sunday night I got a video from parents of a perfectly normal 14-month old...[the parents were] convinced that the normal hand movements of a completely social, completely communicative [non-verbal/ babbling] child must be autism. They had already bought several books,” Siegel reported when I contacted her last week. “It is cruel” she added, to encourage parents to imagine that there is something wrong with their child.

Predictably, the mainstream media was quick to broadcast the story. As blogger Zagreus Ammon pointed out on The Physician Executive, “the story was published in the Washington Post before [it came out in] a medical journal. Poor form, but then, who cares, right? It's all entertainment anyway.”

Dartmouth’s Dr. Steve Woloshin, who has written extensively about unnecessary testing, over-diagnosis and “disease-mongering” (both of which we’ve talked about here on HealthBeat), agrees: “We have no idea whether these screenings—and early treatments—are doing more good than harm. Today, people are selling sickness. I would like to know a lot more about the statistic that 1 out of 150 kids is autistic. Where did it come from?”

A little digging produces the answer. Fourteen years ago, only 1 in 10,000 children was diagnosed as autistic—but then estimates began to climb. What happened?  Research shows that autism is inherited; if one identical twin is autistic, there is a 95 percent chance that the other one will be too. (Although some parents fear that autism is linked to vaccinations against childhood diseases, there is virtually no scientific evidence to back up these claims.) And environmental factors don’t account for the spread of the disease.

Instead, it turns out that in the 1990s the definition of autism was expanded to include a group of diseases. At one end of the ASD spectrum, children are diagnosed with Asperger’s syndrome. Unlike most autistic children, kids with Asperger’s can be very verbal, and even pedantic, when talking about subjects that interest them, but they lack social skills. At the other, fuzzier end of the spectrum, one finds a disorder called PDD-NOS (Pervasive Developmental Disorder-Not- Otherwise Specified). With this catch-all incorporated into our definition of autism, the Center for Disease Control now estimates that 1 out of 150 children suffer from some form of ASD.

Today “just about anything can be on the autism spectrum” says Siegel. “The move to increase the rate of diagnosis has taken on a life of its own. In a world where all kids are diagnosed, there are no more shy, anxious kids—they have ASD. In truth, ASD is a significant impairment with specific symptoms,” Siegel emphasizes, “it’s not just a personality variation. But I’m seeing 4-year-olds who are not very impaired who have been diagnosed as autistic.”

Over eighteen years of working with autistic children, Siegel herself has developed a screening process that, she says, is appropriate for an 18-month old “and may work pretty well at 14 months”—but she wouldn’t use it on a younger child. That’s because in the rush to diagnose early, too many children are misdiagnosed.

“The younger the child, the fewer ways that the brain has to say ‘ouch,” Siegel explains. So a “symptom” like delayed speech development could be signaling any one of a number of problems. “The child may be hard of hearing; he may be living in a family where, instead of talking to him, his parents park him in front of the TV; he may be in a household where four different languages are spoken…”

Some parents of children with learning disabilities also have a reason to push for an ASD diagnosis. In 1990, passage of the Individuals with Disabilities Education Act made children diagnosed with autism disorder eligible to receive special education services. "The truth is there's a powerful incentive for physicians and schools to classify children in a way that gets services," Dr. Edwin Trevathan of the U.S. Centers for Disease Control and Prevention recently told the Associated Press.

And of course, once these children are diagnosed, they are treated.  There is no cure for autism, but the AAP advises intervention “as soon as an ASD diagnosis is seriously considered rather than deferring until a definitive diagnosis is made. The child should be actively engaged in intensive intervention at least 25 hours per week, 12 months per year with a low student-to-teacher ratio allowing for sufficient one-on-one time. Parents should also be included.” [my emphasis.]

Siegel is worried: “The pediatricians are, as far as I’m concerned, going about this a bit impulsively—as very, very few have a clue about what would be appropriate treatment for a child who truly screened positive at, say, 14 months. And the risk of really stressing the child further by exposing him to treatments appropriate for a 2-1/2 to 3-year old are also painful to contemplate. It’s good that awareness of autism is growing, but I’m concerned that this is the wrong kind of awareness.”
If a shy, anxious child is labeled with ASD –and then is subjected to “surveillance” and treatment, one can only imagine how much damage might be done. And it is not only the child who will suffer. Inevitably, the parent-child relationship will change. “Anytime you make a parent think a child is defective, you’ve done something terrible to that relationship,” says Siegel. “The parents of the ‘defective’ child will expect less of him.”

And yet the AAP report shows no mercy. It encourages parents to remain vigilant by explaining that a child may appear normal—and then regress. “Approximately 25% to 30% of children with ASD begin to say words but then stop speaking, often between the ages of 15 and 24 months. Regression of skills in children with ASD may also include loss of gestural communication (wave, point, etc) and social skills (e.g. eye contact and response to praise) or a combination of both. Regression can be gradual or sudden…”

Finally, it’s worth noting that the report published in the Academy’s journal, Pediatrics, ends with an Appendix. The Appendix explains how a pediatrician can go about getting paid for his labors: "reimbursement for the administration of developmental and ASD-specific screening tools is an important aspect of screening. Developmental screening tests, including ASD-specific tests that are completed by a parent or nonphysician staff member, and are reviewed and interpreted by the physician, can be billed appropriately by using Current Procedural Terminology (CPT) code 96110."

Comments

[maggie mahar]

Ginger B--
First, thanks for calling me "bold." (Because you are a woman I feel pretty safe in assuming that this is a compliment. This isn't to say that only women appreciate bold women--when I read your comment to my husband he grinned.)

MOre importantly, you made a crucial point when you wrote: "the structure of our schools and health system, along with competitive pressures on parents create a perfect situation for this kind of service to grow and grow and grow."

My son was the sort of kid who didn't sit still and do what he was told to do. This was difficult, for me, and for his teachers. But I understood that this was his temperment and personality. And when he got to be twelve or so, and became very active in sports (not through the school, but Little League adn pick-up basket ball games in the school years and in parks around the city, he found the outlet he needed.
It never occurred to me to medicate him. The problem when he was young was just that he didn't like being a kid; he wasn't good at it and was waiting to become a grown-up.

Now that he's grown, he's a perfectly happy, very productive and well-adjusted person who has many friends. Sometimes, you just have to wait for a kid to find himself.

[maggie mahar]

Ginger B--
First, thanks for calling me "bold." (Because you are a woman I feel pretty safe in assuming that this is a compliment. This isn't to say that only women appreciate bold women--when I read your comment to my husband he grinned.)

MOre importantly, you made a crucial point when you wrote: "the structure of our schools and health system, along with competitive pressures on parents create a perfect situation for this kind of service to grow and grow and grow."

My son was the sort of kid who didn't sit still and do what he was told to do. This was difficult, for me, and for his teachers. But I understood that this was his temperment and personality. And when he got to be twelve or so, and became very active in sports (not through the school, but Little League adn pick-up basket ball games in the school years and in parks around the city, he found the outlet he needed.
It never occurred to me to medicate him. The problem when he was young was just that he didn't like being a kid; he wasn't good at it and was waiting to become a grown-up.

Now that he's grown, he's a perfectly happy, very productive and well-adjusted person who has many friends. Sometimes, you just have to wait for a kid to find himself.

[GingerB]

First of all I think you are pretty bold to be taking on Autism, and totally correct in asserting that there is very little credible scientific evidence that vaccines cause it. If that statement doesn't get you zillions of anti-vaccine commenter's then it's only because they haven't read it!

There are just too many parties who benefit from the expanded definitions of Autism. As a mother who shepherded two active boys through public schools I know how happy they are to suggest a visit to a doctor to diagnosis a problem, and to medicate. In their quest for expanded academics many schools have virtually eliminated recess, so there are plenty of active children bouncing around inside all day.

Of course, medication requires a physician. Many behavioral meds can't be refilled without a new prescription -- necessitating an office visit.

I don't want to debate whether children do or don't have more behavioral problems than they used to, but the structure of our schools and health system, along with competitive pressures on parents create a perfect situation for this kind of service to grow and grow and grow.

[Maggie Mahar]

Maddie and Joe Blow-
Maddie--thanks for the head's up about the piece on NPR.

Joe Blow-- Unfortunately, most kids are not treated by autism "specialists" like Siegel. And pediatricians have very, very little training in this area. Siegel says that Pediatric residents typically spend one day--possibly two days--observing at her clinic. There is no "rotation" in autism.

And the kind of behavior modification that is involved can be very harmful, and stressful. True autism specialists write about the danger of the child's personality being "broken down" and disappearing.

Many people are "eccentric" in one way or another, and some of the most talented people, who have contributed greatly to society, were extremely eccentric as children.

If the child is in pain and hurting himself (hitting himself, etc. which you do see in some truly autistic kids) that's one thing. But the child who is very shy, talks only about dinosaurs when he's 4, and seems somewhat nervous around people may be just fine. You'll only make him more nervous if you start trying to "modify" him at 14 months.

[joe blow]

I dont think increased screening is necessarily a bad thing. Its not like the treatment for autism is some kind of awful medication with disastrous side effects.

The treatment for autism is personal therapy with autism specialists. Whats the harm in that?

I dont see any evidence that kids are actually being HARMED from the autism treatment.

The only downside I can see is the increased costs. Special education is a massive burden on public school districts.

[Maddy]

There was a very interesting discussion on NPR talk radio with Brianna Siegel as one of the commentators. I'm sure it would be available in their archives.
BEst wishes