Putting Recommendations Into Practice: Obtaining Services for Children Recently Diagnosed with ASD

Background: Children with autism spectrum disorders (ASD) often require a variety of therapies and services to address the core deficits and ancillary problems. Guidelines suggest children with autism require intensive and specific therapies. It is not known to what extent physicians provide recommendations according to those guidelines, how well these recommendations are implemented, and the barriers parents face obtaining these services. The limited literature in this area suggests challenges to obtaining appropriate services.

Objectives: To examine physician recommendations to parents of children newly diagnosed with ASD, compare them with what children receive post diagnosis, and describe the difficulties and barriers parents report in attempting to obtain recommended services.

Methods: The sample consisted of 37 parents of children who were recently diagnosed with an ASD at one children’s hospital in a large urban setting. Parents completed questionnaires and participated in a semi-structured interview eight weeks post-diagnosis. The diagnosing physician’s recommendations were extracted through chart review. Transcripts from interviews were reviewed for parent report of service use, desire for additional services, and difficulty obtaining services.

Results: 27 charts have been reviewed to date. Preliminary findings suggest that the majority of families (76%) were receiving early intervention services prior to diagnosis. Diagnosing pediatricians recommended between 3 and 13 services and referrals, with an average of 7 per child. Speech therapy and occupational therapy were the most commonly recommended services for 82% and 75% of the children, respectively.  Seventy-six percent of parents reported that their child received speech therapy, with 11% seeking additional hours based on the physician’s recommendation. Occupational therapy was reported for 94% of children, with no one reporting an increase based on recommendations. Physicians recommended behavioral intervention for 78% of children; however only 29% reported receiving any behavioral intervention and 11% reported unsuccessfully seeking behavioral intervention based on physician recommendations. Physicians specifically recommended ABA-based therapies for 37% and Floortime for 33% of children; however, only 6% received each of these types of therapy, with an additional 6% unsuccessfully seeking these therapies. Of the sample, 35% noted that it was very difficult to obtain services, while 17% found it somewhat difficult.

Conclusions: Most children are receiving at least some physician-recommended services, especially speech and occupational therapies. However, more specific treatments, such as ABA and Floortime, were not specifically and regularly recommended. The lack of recommendations may be due to physicians’ awareness of the challenges obtaining such services or the availability of trained professionals. Parent descriptions of the process of acquiring services for their child will be helpful in understanding the barriers to obtaining care.