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Published on: August 21, 2015
Parents seek early intervention services for a two-year-old without autism
Arathi Reddy1, Crista Graves, Marilyn Augustyn
1Boston University School of Medicine for Reddy, Boston, MA, USA.
Insights
A child presented with developmental delays, including language and behavioral challenges, and sensory processing issues. Despite not meeting autism spectrum disorder criteria, parents sought a PDD-NOS diagnosis for increased therapy services.
Area of Science:
- Developmental Pediatrics
- Child Psychology
- Speech-Language Pathology
Background:
- A 27-month-old boy exhibited developmental delays, including limited speech, poor regulation, and sensory sensitivities.
- Previous evaluations noted normal physical growth and hearing but persistent concerns regarding social interaction and communication skills.
Observation:
- The child demonstrated a mixed receptive and expressive language delay, with approximately 30 single words at 24 months.
- He experienced significant behavioral challenges, including tantrums and head-banging when frustrated, alongside difficulties with sensory input (e.g., bath time).
- Initial assessments ruled out autism spectrum disorder (ASD) and pervasive developmental disorder-not otherwise specified (PDD-NOS).
Findings:
- The child was diagnosed with mixed receptive and expressive language delay and disruptive behavior disorder with sensory processing problems.
- Despite not meeting ASD criteria, a behavioral therapist recommended applied behavioral analysis (ABA) therapy, contingent on an autism spectrum diagnosis.
Implications:
- The case highlights the ethical dilemma of diagnostic labeling for accessing necessary early intervention services.
- It underscores the importance of accurate diagnosis versus parental requests for specific labels to facilitate treatment access.
- Further evaluation is needed to determine the most appropriate diagnostic and therapeutic pathway for the child's developmental needs.
Abstract:
Sam is a 27-month-old boy who you have followed since birth. He lives with his parents in a small resort town approximately 90 miles outside a major city. Both his parents are professionals in their late 30s and have been highly involved in his care since birth. At the 12-month visit, they were concerned about his difficulty regulating. He was not sleeping through the night and had significant difficulty with baths. His physical examination and growth were normal. His eye contact was good, although it was difficult to see him smile. He had 1 or 2 words and was beginning to walk independently.At the 15-month checkup, they continued to be concerned about his poor regulation. He napped sporadically, and he was very difficult to take out on errands as he did not like his car seat. He now had approximately 10 single words, was using his fingers to point, and very clearly waved "bye bye" as soon as you entered the room.At the 18-month checkup, they state that he has not yet learned the word "no." He will follow a 1-step command when he wants to but now has 15 single words without any combinations. He points for his needs and to show them something. He has become increasingly "shy" around strangers and prefers to play with one other child as opposed to a larger group. He does not like loud noises and prefers to go barefoot constantly. His physical examination was again normal as was his growth. He is referred for a full hearing evaluation, which is also normal. The family was referred to early intervention, and he began receiving speech and language therapy and occupational therapy for his sensory challenges as well as a play group.At the 24-month checkup, his language continued to consist of single words-now approximately 30. When the parents do not understand what he wants, he will often tantrum and has started banging his head on the floor when frustrated. He has no repetitive behaviors and is starting to demonstrate imaginative play. Bath time has becoming increasingly challenging because he does not like the sensation of soap and the water temperature must be "just right." You refer the child to a Developmental and Behavioral Pediatrician for evaluation and at 28 months he is seen. During his testing visit, he had decreased eye contact and followed his own agenda but improved significantly as testing progressed. As he got more comfortable, he began making good eye contact, social referenced, and exhibited joint attention with his parents and the examiner. He did not meet criteria for an autism spectrum disorder or specifically pervasive developmental disorder-not otherwise specified (PDD-NOS). He was given a diagnosis of mixed receptive and expressive language delay and disruptive behavior disorder with sensory processing problems.The parents come to you a month after their evaluation visit asking you to give him a "listed diagnosis of PDD-NOS" that could be removed when he turns 3 years so that he may qualify for increased hours of services-up to 15 hours per week-as well as applied behavioral analysis therapy. A behavioral therapist through early intervention has told the family that he would benefit from this increased intervention, specifically applied behavioral analysis but the only way he can receive it is with a "medical diagnosis" on the autism spectrum. What do you do next?
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