Autism Awareness versus Autism Anxiety

Today, April 2, has been designated as Autism Awareness Day, and I think this is a wonderful idea--  provided that what people are made aware of involves accurate information about autism. To be anxious about autism—an increasingly frequent condition of parents--  is not the same thing as actually being aware of the facts. Here are some of the factual issues that can create a lot of anxiety if not understood.

1. Diagnosing autism

I receive almost daily inquiries from young parents who are terrified that their infants of a few weeks old are autistic, because the babies don’t gaze into their eyes, or sometimes because the babies are rather placid. These very worried people are not aware that babies do not become very socially interactive until they are three or four months old. In fact, in the old days before autistic disorders had been described, this normal stage was often referred to as “autistic” or self-absorbed.  The anthropologist Ashley Montagu spoke of human beings as having a period of “exterogestation” in which babies developed for a few months as if they were still in the womb, and it’s during the months of  “exterogestation” that autistic self-involvement and inattentiveness to stimulation are evident.

Someone asked me yesterday how babies acted at two months of age when they were going to be diagnosed as autistic later on. This is an excellent question (as we all say when we don’t have an answer), but think what would have to be done in order to know this. We would have to have careful descriptions of the behavior of thousands of two-month-olds, follow them until age 2 or 3 years, and find out which ones were diagnosed as autistic--  then look to see whether there had been differences at two months between those who were later said to be autistic, and those who were not. This research has never been done, and given our current fiscal austerity, I don’t suppose such expensive work will be done in my lifetime, although perhaps it will eventually take place.

The bottom line is that it is not possible to tell babies who will be autistic apart from those who will not, when they are very young. I know this is disturbing in light of the constant emphasis on early intervention, but it’s a fact nevertheless. It’s also a fact that when babies are diagnosed as being autistic during the first year or so of life, there are many false positives--  children who are categorized as autistic, but who then proceed along a typical developmental trajectory. Even  toddlers and preschoolers may be incorrectly diagnosed. One of the problems is that some behaviors often associated with autism, like toe-walking and hand-flapping, are also often seen in younger typically-developing children.

2. That epidemic

One concern that naturally makes parents anxious about autism is the constant reference to an epidemic of autism, with numbers of diagnosed children increasing so rapidly that if we keep on at this rate everyone will be autistic and the concern will be about those unfortunate neurotypical kids, growing up in a world they don’t understand!

Is there really an epidemic of autism? Or do these increasing numbers have something to do with the way we diagnose and count cases of autism? There’s no question that criteria for the autism diagnosis have changed over the years, and of course there will be more or fewer diagnosed cases if we broaden or narrow the standards for making the diagnosis. The anthropologist Roy Grinker (grandson of the famous name, if anyone remembers him) has looked at editions of the “Diagnostic and Statistical Manual of Mental Disorders” (DSM) back to the first edition in 1952. Autism was originally conceived of as a type of schizophrenia, later as possibly a cause of mental retardation, still later thought to be related to attachment, and in the most recent edition is connected with communicative disorders and includes the problems that used to be called Asperger’s syndrome. There are likely to be big differences between numbers of children diagnosed as autistic when the criteria are those for a form of schizophrenia, and the numbers diagnosed when an “autistic spectrum” includes mild social disabilities. This is not to say that there is or is not an actual increase in cases of autism, but the facts warn us to be careful about conclusions that may be based on apples only, apples and oranges together, or all the fruit in the produce aisle.

A relevant piece of information is that state autism rates are correlated with the average adult educational level of the state. That is, in states where adults tend to be highly educated, there are high rates of autism diagnoses. Does this mean that we’re back to the old idea of the over-intellectual refrigerator mother who causes autism? No, what it probably means is that when parents are well-educated and know that autism is a possibility, they are more likely to seek that diagnosis and the treatment that can go with it. Less educated parents may assume that their possibly-autistic child is “just peculiar” or perhaps mentally retarded, and never seek diagnosis or treatment. (And by the way, if they happened to choose homeschooling, who else would there be to suggest a diagnosis?)

3. What causes autism?

At the risk of repeating myself and many other people, I want to say that It Is Not About Vaccines, with or without thimerosal, or whether on the recommended schedule or some other schedule. Andrew Wakefield’s study pointing to vaccination as a cause of autism was fraudulent, and this has been known for quite a while.

An excellent article by Sam Wang, “How to think about the risk of autism”, appeared in the Review section of the New York Times on March 30. A graphic showed a list of possible causes of autism and the risks associated with each one. (For those who are worried about the effect of older fathers [over 60], fewer than 3% of the children of such fathers are expected to develop autism.) The effect if being premature by 9 or more weeks is much greater, but still, fewer than 3% are later diagnosed as autistic.

The huge cause of autism is a genetic one; when one identical twin is autistic, the chances are between 36% and 95% that the co-twin will also receive this diagnosis.(However, because there seem to be many genes and gene interactions at work in autism, there is no genetic test available.) For fraternal twins, who are not genetically identical, the chances are up to about 30% that if one twin is diagnosed as autistic, the other will also be diagnosed. The other leading cause of autism, a non-genetic factor, is damage to the cerebellum at the time of birth, which is rarely mentioned by the mass media.

4. Are there good treatments for autism?

I wish I could answer this question more positively than I can. The best established treatment for autism, Applied Behavior Analysis (ABA), was originally reported to be highly effective and to enable a large proportion of autistic children to attend mainstream classes without any special help. But a more recent randomized controlled trial suggests that the size of the effect of ABA is not nearly as large as had been thought. ABA is often recommended by school child study teams and is often paid for by health insurance.

Another treatment that has been put forward as useful for autistic children is DIR/Floortime ™, a procedure that encourages the development of communication at levels from the simplest to the most complex. Unfortunately, there has been little research giving supportive evidence for the effectiveness of DIR. A randomized controlled trial has been said to be ongoing, but I have not been able to find that it has been published.

Both ABA and DIR are plausible in terms of established information about child development and learning.

I am sorry to say, however, that there is a list of implausible, non-evidence-based psychological treatments that are sold to concerned parents and that make unreasonable claims both about causes of autism and about their own effectiveness.  (These are in addition to physical treatments like chelation or diet restriction.) I will describe a few of these.

Holding Therapies, methods that involve physical restraint of children accompanied by demands for emotional expression, were suggested for treatment of autism in the 1960s. These treatments are painful and frightening for children and have largely been rejected in the United States, in spite of the support given to them some years ago by Temple Grandin and Bernard Rimland.  They continue to be used in Germany and in the Czech Republic, in spite of  the protests of psychologists in those countries. There is no evidence that Holding Therapies are effective in treating autism. Jirina Prekopova, the leading Czech proponent of the treatments, has in fact shifted her claims to a religious/spiritual benefit and re-named her method a “lifestyle”.

A treatment that shares some concepts with Holding Therapies is le packing. This French method combines restraint through wrapping in cold, wet sheets with a psychoanalytic approach, and is based on the belief that autism results from a poor mother-child relationship. It has been stated that a randomized controlled trial of le packing is underway, but I have found no published report.

Son Rise ® is a method advertised in the United States. It proposes that  autism is caused by a lack of bonding. Treatment involves adult efforts to encourage eye contact by wearing big glasses and holding interesting objects near their eyes to attract the child’s attention; adults also practices “joining” (a method derived from dance and movement therapy) by imitating the child’s self-stimulating movements. There is no acceptable evidence supporting Son Rise®, but it seems to be attractive to parents desperate for help.

HANDLE (Holistic Approach to NeuroDevelopmental and Learning Efficiency) is a method which assumes that autism is an extreme anxiety disorder, although it is not clear how HANDLE techniques would impact anxiety. HANDLE uses a variety of exercises such as the wearing of red and blue “3D” glasses and sucking on “crazy straws”; these are said to increase eye coordination and stimulate the cranial nerves by causing rhythmic stimulation of the brain hemispheres. HANDLE therapists also practice face-tapping by tapping with their fingers along the lines of the trigeminal nerve, to the rhythm of “Twinkle, twinkle, little star.” The CAM practice of Reflexology is referenced as the rationale for the tapping. Needless to say, there is no systematic evidence that HANDLE is effective as a treatment for autism.

I hope that some real awareness about autism, the facts about the “epidemic” and the actual causes of the disorder, can reduce a bit of the anxiety about autism that is tormenting many parents. I also hope that some understanding of the implausible treatment methods on offer will help guide parents of autistic children to ABA and DIR, the methods that are plausible, even though their evidence basis may not be what we would like to see.