There has been some controversy in the news recently over changes being proposed to the diagnosis of autism. Many families are concerned that their child will no longer qualify for a diagnosis and, by extension, for services they depend on to care for their children.
As a clinician who specializes in the treatment of autism spectrum disorders, I wanted to take a moment to reassure families. Based on my experiences treating kids on the autism spectrum and working with their parents, as well as my knowledge of the new definition, I believe the changes will help improve treatment. They should not be regarded as a narrowing of the definition, but as an attempt to clarify a diagnosis that has recently become murky.
The recommended changes will likely be put into effect at the end of 2012, with the publication of the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders, commonly referred to as the DSM V. The DSM is the definitive guide to the diagnosis of mental health disorders, and thus has a substantial impact on treatment as well as on insurance coverage. Years of research and thought from leading experts go into each round of changes (the last edition came out in 1994). The upcoming changes to the autism definition are no exception.
Because autism is a "spectrum disorder," meaning that the severity of symptoms ranges from mild to debilitating, we currently have a number of diagnoses used to categorize varying degrees of autism. These include Asperger's, generally a milder form of the illness; Pervasive Developmental Disorder Not Otherwise Specified, often referred to as PDD-NOS, a term I find is especially confusing for parents; and less formal designations such as "high functioning autism."
Over time, we've found that this system can actually make it harder to diagnose and treat kids who are on the autism spectrum. Different clinicians in different parts of the country will give the same child a different diagnosis; sometimes even two doctors within the same organization will each give a child a different diagnosis. While psychiatry is good at identifying children who have some form of autism—as opposed to misdiagnosing them with depression or ADHD, for example—as a field we often disagree on these labels within the range of autism, with confusing results for children and families.
The new system will do away with these labels that have not proved useful. There will be one diagnosis of "autism spectrum disorder," and I have found that the children I diagnose with autism now will continue to qualify for the diagnosis under the new criteria. Children who don't meet the new criteria for an ASD will be given a different, more accurate diagnosis of another disorder, which should improve their treatment.
By way of example, we once treated a child here at the CSC who would not make eye contact with teachers or other students at school. She did not speak. She made her mother repeat the same phrases in the same order every morning at the same time, or else she became distraught. In other words, she displayed the social and language deficits and rigid, ritualized behavior we often associate with autism. However, this girl actually had selective mutism, an anxiety disorder, and symptoms of obsessive compulsive disorder. For these children, speaking with people outside their immediate family and making eye contact can be terrifying. They also crave the security of repetition in order to feel safe. This disorder has a completely different course of treatment than autism. To misdiagnose this girl—or any child—is a tragedy our field must leverage all the knowledge at its disposal to prevent. In another, more general example, children on the milder end of the spectrum are commonly misdiagnosed with ADHD. The changes to the DSM V are a move in the right direction in our efforts to ensure that children get the correct diagnosis and treatment as early as possible.
So what are the changes? In the past, there were three categories of symptoms associated with ASDs: language problems, social problems, and restrictive and repetitive behaviors. One major change is that language and social problems will now be combined into one category, and in fact the two cannot really be separated. If a child is having trouble engaging in a simple game with a parent or another child, is it because he has problems with social contact? Or is it because he doesn't have the language capability to think through and follow how the game is played, and communicate with his fellow player? In hindsight it makes much more sense to consider these two types of deficits together.
There are three types of social and communication problems the new criteria will look at in diagnosing children with an ASD. Part of what scares many parents is that a child will need to have all three to qualify for a diagnosis. But each category of symptoms includes a wide range of behaviors or deficits, from mild to severe.
The first is social reciprocity—the back and forth of social interactions. Children with deficits in this area might range from not quite understanding how many times to go back and forth in a conversation, or not sensing when a social interaction has come to a natural close, all the way to not engaging in conversation in the first place.
The next is nonverbal communication, like eye contact and facial expressions. In this instance, one child might use eye contact inappropriately, not picking up on the subtle cues of when to look at someone or when to look away. The same child might use facial expressions inappropriately, smiling when talking about something sad. A child at the other end of the range might not make any eye contact, or exhibit any facial expressions at all. Both children would still qualify as autistic, assuming they meet the other criteria.
The third of the social and language criteria is relationships. Here a child at one end of the spectrum might not quite understand social hierarchies, and that it's appropriate to address your mother in a different way from your teacher, or your friend. A child at the opposite end would have no interest in relating to others at all.
Moving on to restrictive and repetitive behaviors, these criteria also include a range, and a child need not exhibit some criteria at all. For instance, some kids and adults with autism engage in repetitive motor behaviors, like hand flapping, while others do not. A person with an ASD might have restrictive interests to the point where she has trouble steering herself away from a certain favorite topic. At the other end of the range, she might not be able to talk about or focus on anything else. This category includes sensory problems as well, and here the range might be from slight overreactions to particular sounds, textures, or other stimulation, all the way to a complete inability to tolerate them.
As with the example of selective mutism mentioned earlier, right now the diagnostic definition of autism spectrum disorders leaves the door open too far for misdiagnosis—and the resulting mistakes in treatment—that our field must work at all costs to avoid. The health of our children is too important.
I am looking forward to a time when parents are no longer so confused about the range of labels we give to children on the autism spectrum, and to a time when clinicians are all speaking the same language.
The Child Study Center is currently offering a series of free workshops on Autism Spectrum Disorders for families and caregivers. We hope to see you there!