Asperger’s Syndrome: Over Diagnosed or Misunderstood?
This week The Opinion Pages in the New York Times ran several articles discussing the misdiagnosis and/or over diagnosis of Asperger’s Syndrome.
In one column, Benjamin Nugent, a man whose mother, a psychologist, gave him the diagnosis when he was a teenager, wrote a thoughtful and insightful article:
In it, he described being an introverted, creative child who grew up to develop his gift for intuitive social insight. He ends his article with the following comment:
“The definition should be narrowed. I don’t want a kid with mild autism to go untreated. But I don’t want a school psychologist to give a clumsy, lonely teenager a description of his mind that isn’t true.”
As a school psychologist and autism expert, I spend my days interviewing children and adolescents. Over the years I’ve interviewed well over 4,000 children. Benjamin Nugent is correct in his observation that a child can be “nerdy” or “withdraw” or “bookish” and not really have Asperger’s Syndrome or an autism spectrum developmental disorder.
But how do we sort out when a child is struggling with the developmental differences that define individuals who would benefit from a diagnosis of an autism spectrum disorder?
The key lies in developing the ability to have an in-depth conversation with the child or adolescent. Individuals who truly show the differences that merit an autism spectrum diagnosis, including mild Asperger’s Syndrome, organize and structure their conversations in a fundamentally different way than individuals who do not. To get to the heart of this difference, I structure my conversations in a way that is in synch with the unique features of an autism spectrum worldview. I call this having a “neuro-atypical” conversation.
A “neuro-atypical” conversation starts in the middle by jumping into the individual’s topics or areas of interest with little or no social introduction or chitchat. Children on the autism spectrum spend a great deal of time thinking about the facts and details surrounding their areas of interest. The main difference during a “neuro-atypical” conversation about an individual’s areas of interest and a conversation with a “nerdy,” “withdrawn,” or “bookish” individual is that the person with autism spectrum differences relaxes and quickly delves into the details surrounding the topic with little regard for the social nuances of the situation. The “nerdy,” “withdrawn,” or “bookish” person picks up on and responds to subtle social cues during their conversations with others.
Here’s an example of the difference. I recently had diagnostic conversations with two 10 year-old boys. The first boy was deeply interested in Greek Mythology. I started our conversation by asking him if Kronos was considered to be a Titan or an Olympian. He quickly told me the details of the Kronos myth (he is considered to be a Titan; he ate all of his children except Zeus but don’t worry because they didn’t actually die; Kronos coughed them up and they became the Olympic gods) and we had a lively and fun conversation that took us deeper and deeper into details about Greek and Roman mythology and history. This was in the middle of a school day and the boy had never met me before. Even when I asked him if he had any questions for me or for my colleague who was in the room with us, he did not ask any social context or social questions. The experience of having someone display genuine interest in his interests opened the window into seeing his unique worldview. Later in the conversation when I introduced social topics (friends, family) it was apparent that shifting from his agenda to the agenda of social topics was difficult and stressful for him. During the portion of our conversation that focused on his passionate area of interest it was apparent that this child genuinely enjoyed sharing the topic with me. At the same time, there was a sense that part of the pleasure in the conversation was his ability to speak about the topic for his own benefit. In other words, there was a self-directed and somewhat scripted way that he described facts and details. Many times when I offered facts and details he corrected me or overrode my comments and continued with his narrative.
Let’s contrast him with the second 10 year-old boy with whom I also had a diagnostic conversation. This boy’s passion and interest was videogames and specifically Mario Party 8 and Super Smash Brothers. When I started the “neuro-atypical” conversation by jumping into talking about the characters in those games, this child hesitantly and rather reluctantly answered my questions. He looked at me for a long time, looked at my colleague, and told us: “Ooookay…I don’t really talk to grown ups about games. That’s what I do with my friends…” His facial expression clearly communicated that he was wondering where this was going and the purpose of our conversation. When prompted, he asked for clarification, and once the social context was established he relaxed and talked about his social shyness and other personal topics.
Both of these boys struggled with social relationships but only one truly showed the pattern of differences in his developmental that characterizes children with autism spectrum disorders. The child who is passionately interested in mythology struggles socially because he has a desire for social relationships but he literally has difficulty shifting from his agenda to the agenda of others. When he approaches his peers, what is your guess about the prevailing topic of conversation? This child becomes stressed and anxious in social situations because he cannot decode the social cues. His interests capture him in a way that interferes with his ability to use and interpret simple social cues. Furthermore, when he becomes anxious in social situations, his well-developed vocabulary and use of language quickly falters and he has difficulty organizing and using his language skills. He may say unusual things or act in unusual or immature ways.
Receiving a diagnosis of Asperger’s Syndrome can be tremendously beneficial for a child like this. This is especially true if his diagnosis is explained using descriptive language and not the labeling language of the DSM IV. Instead of talking about “restricted repetitive and stereotyped patterns of behavior, interest, or activities,” I talk about how the child organizes his world around his areas of interest, or preferred topics. He organizes his world by categorizing facts and information rather than noticing social and emotional nuances. When he has to manage incoming social, language, and sensory input (unexpected noises, changes in expected routines) he becomes anxious and it becomes increasingly difficult for him to manage his behavior and to communicate. He needs support and direct teaching to help him decode the social world and to expand his ability to recognize and manage his emotional states.
Getting these supports makes a profound difference in a child’s ability to manage the fundamental developmental differences that come with a diagnosis of Asperger’s Syndrome. Most children become less stressed and more confident when their teachers and parents have a coherent way of understanding their needs. That understanding leads to strategies and supports that empower the child. Moreover, it increases the resiliency for children like this child when they read about others with Asperger’s Syndrome. He would most likely identify with accounts written by children with Asperger’s Syndrome. He would find a group of possible friends if he participates in a social skills group at school with other bright children who have autism differences.
Now let’s return to the 10 year-old who likes video games and has some anxiety in social situations but did not show the pattern of differences supporting a diagnosis of Asperger’s Syndrome. If we used the DSM IV labeling language diagnosis, this child showed a “qualitative impairment in social interaction.” In school, he avoided eye gaze, was socially withdrawn, and rarely engaged in reciprocal interactions with others. The reason behind his social interaction difficulties is best understood as some social shyness and anxiety. This child was acutely aware of how marginalized he felt in school with his peers, most of whom organized their social circles around sports activities. He had established a small circle of friends with whom he felt accepted and comfortable. As he grows into adolescence and adulthood and his social possibilities expand to a broader range of people, this boy demonstrated the drive for and social awareness that will help lead him to satisfying social relationships. Would he benefit from supportive counseling to provide him with a place to process his experiences and to talk about his social anxiety? Counseling would most definitely help this child develop the resiliency he will need during adolescence. Describing his worldview through the lens of Asperger’s Syndrome would not only be inaccurate but would only serve to add to his sense of isolation. He would most likely not identify with accounts written by children with Asperger’s Syndrome or by being placed in a social skills group at school with children who have autism differences.
Keep in mind that a great deal of information needs to be considered in making any diagnosis, including a diagnosis of an autism spectrum disorder or Asperger’s Syndrome. Unfortunately, not enough clinicians use the tool of having a genuine conversation with the child or adolescent as part of their evaluation toolkit. Without that connected conversation, school psychologists, psychiatrists, and other clinicians are more likely to misdiagnose. Benjamin Nugent offers the observation that we do not want to over diagnose children. My observation is that we need to get conversational tools into the hands of clinicians so they can do a better job of correctly diagnosing children.