Parents Seek Early Intervention Services for a Two-Year-Old Without Autism

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?