QUESTION: Our daughter turned two last year but she has speech delay. We decided to bring her to a developmental check up to find out the possible cause of her condition. The diagnosis of the first doctor is that she has Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS) and she needs to undergo occupational therapy and speech therapy later on. Before the final diagnosis comes out, we decided to seek second opinion. But, based on the second doctor’s diagnosis, our daughter is far from having autistic tendencies. Her main problem was speech delay and the second doctor asked us to let her take a formal hearing test and enroll her to a regular pre-school/play school where she can interact with other kids. Because of the major differences in the diagnosis, we are now confused what to do and who to believe in. Should we follow the recommendation of the first doctor or should we believe what the second doctor said? We are so confused. We know how important early intervention is but what if she doesn’t need the therapies? Would it be advisable to seek third opinion? Thanks.

A diagnosis of Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS) or atypical autism may be made when a child does not meet the criteria for a specific diagnosis, but there is a severe and pervasive impairment in specified behaviors.

PDD-NOS is under the category of the Autism Spectrum Disorders (ASD) based on the DSM-IVIV TRTR criteria.

This could be the first doctor’s reason for referring you to an occupational and speech therapists. Basically, every child under the age of three is at risk of developing a substantial disability if early interventions are not provided.

Unfortunately, at this point there is no objective or medical test that can be given to an individual to diagnose an ASD. Rather it is a process of elimination based on checking on any areas of concern (e.g. ruling out if the child is deaf because he does not turn or inconsistently turns to name calling) and observations based on the individual’s development as well as social and communication
skills. The second doctor’s diagnosis showed no evidence of autism but only speech delay. In this case, a hearing test was requested primarily to rule out a hearing impairment which could be an etiology of language delay. Enrollment in a regular pre-school was suggested to improve her socialization skills.

Be aware that over time, the diagnostic criteria for ASD change and the opinion of the experts as to what those criteria should be differ as well. So although a diagnosis is helpful and necessary to access services, as a parent you would do better to focus on the behavior characteristics that tell you more about your child and how to help her rather than to get hung up on the diagnosis and what it means. Sometimes it may take a long while for an official diagnosis to be reached, especially if symptoms are too subtle and not classic; like in this case; the diagnosis of the two doctors differed.

However, if you analyze closely, their recommendations were reasonable based on their findings at the time of their neurodevelopmental evaluation. The therapies recommended by the first doctor may be discontinued later if your child no longer needs them. Educational placement may help enhance language skills. Your child’s social skills may likewise be monitored once placed in a regular pre-school together with other kids of the same age. Any deviance from the normal social behavior required of her age may be readily seen.

Seeking a third opinion may be done but again, what is more important is that we are able to address your child’s needs. Is it purely language delay? Or are there behavioral issues that also needs to be addressed?

Keep in mind that each person is unique, whether he has ASD (PDDDD-NOS) or not. As Jerry Newport (an adult with Asperger syndrome) reminds us with the title of his book: “Your life is not a label.’’

MARIA PAZ IRENE P. LUCIDO-BAUTISTA, MD, DPPS, FPSDBP is a Neurodevelopmental Pediatrician at Angeles University Foundation Medical Center