Changing Definitions May Affect Some Autism Diagnoses
Date: April 1, 2012
Question: Our 7-year-old son, James, has been diagnosed with Asperger's syndrome since age 3. We understand this condition will no longer be officially recognized and is to be replaced by Autism Spectrum Disorder. Why is this diagnosis going away? Will our son still be able to receive the special school services he needs?
Answer: Many parents are currently sharing your questions and concerns about this controversial issue. To understand the issue, we will first review the current diagnostic scheme (Diagnostic and Statistical Manual of Mental Disorders, DSM IV-R), then review the proposed changes and the rationale for them (in the forthcoming DSM–V), and, finally, discuss the practical implications for children and families.
Current diagnostic criteria
Currently, Asperger's syndrome and autistic disorder are grouped under the umbrella classification of pervasive developmental disorders (PDD). Disorders in this category are characterized by severe and pervasive impairment within three areas of development:
- Reciprocal social interaction skills
- Communication skills
- Presence of stereotyped (repetitive and restricted) behavior, interests and activities
Although it is more complicated, autism disorder is basically used to describe children with marked problems, usually in all three PDD categories, and whose problems in at least one of the areas were obvious before age 3. However, the nature and severity of the challenges for these children varies considerably. For this reason, clinicians have for some time talked informally about an "autism spectrum."
Some children have mild to moderate difficulties in social interactions and mild to moderate restriction in their interests, but have typical or even precociously developing communication abilities. The best evidence at the time of the creation of DSM-IV was that these children had a different condition than those with autism disorder, and therefore Asperger's syndrome was made a distinct diagnosis within the PDD spectrum.
Since the DSM-IV was published in 1994 there has been an explosion of interest, research, awareness and diagnoses of autism disorder and Asperger's syndrome. The experts reviewing the new information recommended that the current system of diagnosis, with an umbrella category of PDD with subtypes of autism disorder and Asperger's syndrome, be replaced with a single umbrella category without subtypes. This umbrella category will soon be called Autism Spectrum Disorder, with different combinations of features and severity.
The most important reasons offered for the change are:
- For a variety of reasons, it has been difficult to apply the criteria for Asperger's syndrome, leading to the diagnosis being used loosely with insufficient agreement in many situations among experienced clinicians about whether a child (or adult) is best described as having a mild form of autism disorder or Asperger's syndrome.
- Some children with normal language development are best described as having autism disorder because of problems in other areas of development. Previously, normal language development early in life was considered a necessary component of Asperger's syndrome.
- Asperger's syndrome and autism disorder tend to run in the same families, suggesting that we are dealing with one condition with varying degrees of severity in different family members, analogous to how diabetes can run in families but affect individuals differently.
- There is insufficient evidence that the type of "neuro-cognitive" challenges (for example, problems in thinking, processing and understanding) are different for individuals diagnosed with autism disorder and Asperger's syndrome.
These are paraphrased explanations from the DSM-V work group's report. Read them in more detail at www.dsm5.org and search for "proposed revisions."
Implications for families
Currently, a diagnosis of autism disorder can seem more worrisome than a diagnosis of Asperger's syndrome. The image of autism for some may be of someone who is impaired, unlike the image of someone with Asperger's syndrome. Many individuals who have autism do not see themselves as impaired, but rather "neuro-atypical," with different gifts and challenges than neuro-typical individuals. In time, any negative stereotypes associated with autism may subside, and individuals high on the autism spectrum will be understood as individuals who can lead independent, productive lives that involve many relationships.
Many parents are concerned about continued school services for currently identified special needs students since the new Autism Spectrum Disorder criteria specify a level of impairment that will exclude some children who previously met PDD criteria. School systems are obligated by federal law to provide an appropriate education for every child. Ideally, schools will respond constructively so all children will continue to receive the services they need.
As Shakespeare said, "A rose by any other name would smell as sweet." There is something to be said for not having a name for Asperger's syndrome at all. Perhaps psychiatrists have found a way to use a label to pigeonhole some children who merely beat to their own drum. James is James, with his strengths, challenges, personality and spirit, and we hope that the only change is that the psychiatric world has once again changed its vocabulary.
Lucy Daniels Center is a nonprofit agency in Cary that promotes the health and well-being of children and families. This month's question may be a composite or illustration of a parent's concerns. Parents may email questions to firstname.lastname@example.org.