by Anita Browning
Audiences of genres from classic rock music to prime-time TV to award-winning contemporary British literature seem fascinated by autism. Why? Do any of the fictional characters in these examples portray autism accurately?
To find out more about this complex condition, I spoke with Dr. Bryan King, director of Child Psychiatry at Children’s.
Q: What is autism?
A: That’s a good place to start! It might be more appropriate to refer to “the autisms,” as we are talking about a group or spectrum of disorders that we define as “autism” because they share three kinds of symptoms: problems with communication; problems with reciprocal interaction — which may reflect problems in looking at things from someone else’s point of view; and unusual preoccupations or interests and/or repetitive or stereotypical behaviors, like the constant wiggling of a string, for example.
Q: How about an example of a major challenge for children at each end of the spectrum of autism?
A: On the high-functioning end, there are children who have no mental retardation and no delayed language ability, but have the other criteria — the problems with social interaction and the unusual preoccupations or interests — exactly like other children diagnosed with autism. Asperger syndrome would be an example on this end of the spectrum. While it’s true that these individuals may be gifted with prodigious memory skills or mathematical abilities, for example, they are still very impaired by their lack of social awareness and social skills. They can’t relate their interests in train schedules or license plates, for example, to what other children their age are thinking about.
On the other end of this spectrum, at least half of the individuals with autism have mental retardation and impaired communication ability — sometimes no spoken language at all. These are the children who are more likely to display repetitive motor activities, like the wiggling of a string I mentioned earlier. There can also be a range of behavioral challenges for these children, including aggressive or self-injurious behaviors.
Q: What causes autism?
A: The short answer is that no one yet knows. It is a neurobiological/neurodevelopmental disorder that we diagnose entirely on the basis of manifest behavior. This means that something influences the development of the central nervous system and the result is autism. There are ongoing investigations into genetic causes — gene changes of some kind, but also environmental factors — that may influence a child in the early stages of his or her development.
Q: Is there any truth to the idea suggested recently by celebrity mom Jenny McCarthy on Oprah and in the new ABC show Eli Stone that a vaccine could cause autism?
A: There has been a lot of research done on effects of vaccines and investigations on environmental factors are still ongoing, but there is no evidence that vaccines or anything in them cause autism. One big problem with that particular example is that it’s really only starting to be possible to make a diagnosis of autism at about the same age that children are being vaccinated and it can be tempting to associate the two.
At 18 months, a clinician may be able to make the diagnosis in some cases, but at 2 years old we can be much more secure. Remember, core features of the disorder require the ability to assess language and preoccupations. So, when red flags for autism appear, it’s difficult to tell if it’s because of something that happened recently, or if a problem had existed but wasn’t observable because a child had previously not had as many opportunities for meaningful social interaction.
Also, autism is an “equal opportunity” condition, in that there is not a disproportional rate of diagnosis among ethnic, racial or socio-economic groups, and it still occurs in children who have never been immunized. At the same time, boys are four times more likely than girls to have autism. Given that statistic, it seems unlikely that a vaccine given to all children would cause autism in boys but not girls.
Recent studies have also shown that the rate of autism diagnoses has not changed in the past few years even though thimerosal — the preservative in some vaccines that people have worried abou t —was essentially removed over five years ago. Most scientists believe that there must be other factors.
Q: So, maybe it’s not the vaccine, but it is possible for a child to “get” autism — I mean, not all children diagnosed are born with autism, right?
A: Right, it is possible for a child who seems developmentally “normal” up to a certain age to lose skills. In fact, about 40% of children with autism are diagnosed after they have lost some language and communication abilities. It’s called regressive autism.
Q: Autism has permeated every venue of pop culture. Why do you think people are so fascinated by autism? Why did you choose it as your specialty?
A: I think the growing incidence of autism everywhere, in the U.S., in Europe, in Japan, all over the world, means that more people have been personally touched by it or at least know someone who has personal experience with it.
As for my interest, there is not a single answer, but when I was in training, I observed an entire group of children with autism at the hospital where I was working. It was so clear that there was something very significant going on and that these children had no control over their behavior — they were profoundly affected by some neurodevelopmental condition. There was so much to do to help them and learn about them.
And their families are so amazing. Since I’ve been involved with individuals with autism, I have met so many phenomenal, inspirational parents — it was easy to get hooked.
Q: What might explain the increased prevalence of autism?
A: We don’t know. The diagnosis has not increased at the expense of other diagnoses; there are still as many kids diagnosed with mental retardation and other impairments as there were before, so it’s not like we’ve just started re-labeling everyone as having autism. It is probably worth saying that even if the apparent increase in prevalence just represents better recognition on our part, it doesn’t change the fact that autism is much more common that previously believed.
Q: Approximately how many kids with autism do we see here in a year?
A: About 1,000 kids come through Children’s in a year and we see another 600 at the University of Washington. We diagnose hundreds.
Q: In your professional experience, have you seen children improve?
A: Yes, definitely. Some children have made such spectacular improvement that their autism diagnosis isn’t really relevant any more. The progress of others may be much less dramatic, in spite of the very same interventions, but it is important never to stop trying to get to a better place.
Q: What kinds of treatments work best?
A: It’s hard to say because not every child will experience the same benefits from one kind of treatment. At the moment, our approach is to treat what we see. For example, if we see a delay in communication or social skills, we teach those in an intense, concentrated way. If we observe maladaptive behaviors, we work to provide alternative behaviors. We basically borrow from our best practices.
Q: What is your professional opinion about celebrity mothers who say it can be cured or reversed and actively promote their “methods,” like a gluten-free diet, etc.?
A: On one hand, I think it’s great that autism has been “discovered” because it generates interest that leads to fundraising, research and better services.
On the other hand, while there are some examples that seem to support the influence of early life experiences and environmental factors on the development or expression of autism, these claims based on one person’s experience put families in a place where they often feel like they have to try one more thing to cure their child. Can you imagine hearing that a cure is at hand and not exploring it? And when it doesn’t work for you, there is just one more opportunity to question whether you didn’t do it quite right — whether you failed in some way as a parent.
It is clear that neurobiological factors contribute to the condition. Until we know what’s going on, we will not be able to “cure” autism, but, again, I have seen children improve tremendously as a result of some of the treatments we use currently.
Q: What kind of research is being done?
A: There are many projects in the works. A really exciting new development is an extension of a recent study at the UW in which researchers used intensive intervention with young kids, rewarding eye contact and verbal communication, and had very positive results. Going forward, we are now recruiting infant siblings of children with autism — kids who are at relatively higher risk for developing autism because of shared genes — in hopes of intervening even before symptoms are present.
There are also studies being done to help us get a better understanding of genetics and how the brain develops in autism. Some research uses imaging technologies to map brain development. Environmental factors continue to draw interest. Other research focuses on associated conditions like behavioral issues, gastrointestinal problems and sleep disorders. Here at Children’s we’re also studying the effects of medicines to help reduce behavioral problems in some children with autism.
Thanks to Dr. King for spending time with me and sharing his experience with and knowledge of autism. If you are interested in reading more, these stories were recently in the news: