Dear Dr. Luskin,
My son was given a label of Asperger's syndrome by his school in seventh grade. He had been struggling since kindergarten. The school noticed that while he was very outgoing he could not work in groups. We noticed he never kept friends and other children rarely called him. In addition, he was very focused on the science of weather and could not adjust to change. A diagnosis of Asperger's syndrome seemed to answer a lot of questions and he started doing better in school with support.
He is now 17 and we were told that he needed a formal diagnosis in order to get support once he left school. We consulted a professional who told us that he could not have an autism spectrum disorder because he was "too social." He now has one or two friends (both from the ASD program at school). When asked he says he has many friends as he considers all acquaintances to be his friends. Can you help clarify what's going on?
-Confused and Concerned
You are not the only one a little lost in this situation. Diagnosis of autism is based on the criteria listed in the Diagnostic and Statistical Manual of the American Psychiatric Association (DSM). We currently are using the fifth edition (DSM-5). The criteria include a number of traits that have to be present for a diagnosis. In the area of social and communicative differences a person must show deficits in reciprocity, deficits in nonverbal communication, and failure to develop peer relationships at a developmentally appropriate level.
You will notice that the criteria do not say that a person is not extroverted or does not like people. Your son's difficulty in making and keeping friends despite his trying hard to do so suggests that he would meet these criteria.
There also are four items relating to flexible behavior, such as repetitive or stereotyped movements or speech; interests that are unusual in intensity or focus, repetitive rituals; or resistance to change, and sensory differences. A person must have at least two of these four. These behaviors must be present in early childhood, although the way they look may change with time.
As you can see, diagnosis of ASD requires a careful review of both present functioning and developmental history. No one behavior can be used to either diagnose ASD or rule it out. Unfortunately what some people, including some professionals, know about ASD is limited to a few cases, and often those are the cases portrayed in the media.
At AuSM we have heard people being told that they could not have ASD because "they do not flap their hands"; "they speak too well"; "they looked at me during the interview"; "he went to college"; and "he is married". None of these rule out an ASD diagnosis.
When seeking a diagnosis it is important to ask the professional what his or her background is in ASD and what information he or she will be using to make a diagnosis. A developmental interview is essential and you should be part of the process. Testing can be helpful, but there is no one test that can be used to diagnose ASD. The ADOS and the ADI-R are two very good measures but they require the facilitator to have some training and familiarity with ASD.
You know your son. If the professional you saw cannot give you an explanation that makes sense to you, it is reasonable to seek a second opinion.