Sunday, September 7, 2014
DSM-5 and Autism
I had the good fortune yesterday to attend a lecture about the DSM-5 approach to diagnosing autism, given by Judith Miller of the Center for Autism Research at Children’s Hospital of Philadelphia. Dr. Miller provided a good deal of interesting information, and I want to summarize some of this.
Insurance companies adopted DSM-5 on January 1, 2014, and that fact caused much concern among parents of autistic children (previously diagnosed with Pervasive Developmental Disorders), who were afraid of losing services that their children needed and had been receiving. This worry was triggered by the awareness that DSM-5 had dropped Asperger’s disorder as a diagnostic category and had removed Rett’s syndrome from the new Autism Spectrum Disorder diagnosis. However, children who had received the autism/PDD diagnosis in the past are “grandfathered” into the new category and do not lose services. (This applies primarily to children diagnosed previously with Asperger’s syndrome. Rett’s syndrome is no longer a psychiatric diagnosis, but a medical one, as a genetic cause for it has been discovered.)
DSM-5 requires a narrative description of a child’s atypical behavior. This narrative includes reference to eight categories of problems, and assessment of the severity of each. It’s notable that delayed language, long considered a criterion for autism, is no longer included; assessing language problems is important, but these difficulties are not unique to autism, and children for whom language is the major issue should be evaluated for social (pragmatic) communication disorder.
Here are the eight categories to be considered in diagnosing Autism Spectrum Disorder. All need to be considered with respect to typical behavior for the child’s age, rather than in absolute terms.
1. Nonverbal communication. This includes age-appropriate use of eye contact, gesture, and body language as means of communication.
2. Difficulty with relationships. This applies to relationships in general, not just to peer relationships, and it includes delays in pretend play.
3. Social-emotional reciprocity. Depending on the child’s age, this can include delays in playing peek-a-boo or other social games, difficulty in picking up social cues like facial expression, lack of social sharing through telling interesting things or attending to others’ interests, and impaired conversations in which the child is unable to start a conversation, to end one, or to take turns in speaking. People may be “used as tools” (for example, child places mother’s hand on a doorknob to get it opened) rather than approached with communication.
4. Circumscribed interests. The child’s interests are intense and very specific, are often not interesting to others, but sometimes, as in the case of sports or music, may be the foundation of social interactions.
5. Routines and resistance to change. The child may not be able to process what is happening outside the routine, and disturbance of the routine may be followed by a tantrum. The behavior may resemble anxious behavior or obsessive and compulsive patterns. (Typically-developing toddlers also show this tendency to some degree.)
6. Stereotyped movements, speech, object use. Flapping, pacing, and bouncing movements, and repetitive or echolalic speech are included, as is the intense need to hold onto specific toys. (Again, toddlers’ typical development may have these features.) These behaviors are rhythmic and volitional rather than random fidgeting or involuntary tics, and the child seems “zoned out” while doing them.
7. Unusual sensory reactivity or interest. Some, but by no means all, children with ASD are overwhelmed by lights or sounds or textures, and some are “obsessed” by spinning objects, flashing lights, or smells. (Although these behaviors are sometimes attributed to sensory integration disorder, there is little evidence that such a disorder exists.)
8. Onset in early developmental period. The previous criteria for diagnosis of autism had specifically stated that the disorder began before 30 months, but this criterion is now less stringent.
Several of these criteria must be met in order for a child to receive the new ASD diagnosis, but few children will show all of them. As Dr. Miller’s presentation pointed out, autism is a heterogeneous disorder, and in addition to that fact, there may well be co-occurring problems to be diagnosed. It’s important to avoid the “diagnostic overshadowing” that was shown decades ago in assumptions about Down syndrome-- that is, that if a child had Down syndrome, all difficulties were explained by that diagnosis. Any child may have ASD and also have medical problems and/or additional psychiatric or developmental diagnoses.
Readers of this blog regularly send in queries about very young infants and the possibility of identifying autism on the basis of their current behavior. Looking at the list of criteria above shows that infants under 6 months do not have the abilities to do any of these things other than using eye contact as a social signal, and typically-developing infants under 3 months do very little even of that. Until a child reaches an age where typically-developing children are able to behave in ways relevant to the rest of these criteria, the child’s atypical behavior cannot be used to assess for ASD. Because we are all concerned nowadays about the need for early identification and intervention with problems, young parents are afraid of missing some very early cues and passing some “window” during which their child could be helped. Nevertheless, although there is some work going on to try to identify ASD problems earlier, this cannot yet be done. And, in all candor, it would not be clear how to intervene with young infants even if early diagnosis were possible. The only advice that can be given is that good development is supported by sensitive and responsive parenting, and this presumably applies to children with ASD as well; such parenting may not prevent or cure ASD, but it will help to provide the best developmental outcome for a child’s particular issues.
An audience member at Dr. Miller’s presentation spoke of her experiences with parents who are willing to accept the ASD diagnosis before there has been a complete diagnostic work-up-- even, at times, when they see that their child shares some characteristics with another child who has been diagnosed. This may again have to do with the belief in the importance of early identification and intervention, or with the understanding that services are available for a child with the ASD diagnosis when they may not be there for a child with somewhat similar problems but no diagnosis. However, everyone should understand that ASD is not necessarily easily diagnosed, and that excellent training and experience are needed to put this diagnostic skill within a professional’s appropriate scope of practice. Remember, too, that there are specific genetic and other medical problems that may resemble aspects of ASD, but their treatment needs to be rather different than what ASD would require.