A Preliminary Study On the Treatment Initiation of Families After Their Child Received An Initial ASD Diagnosis

Background: Given recent advancements in early detection and public awareness, the prevalence of ASD has now reached an unprecedented magnitude. We know that early and intensive intervention can help a child with autism make substantial developmental and adaptive improvements.  A major obstacle for children with ASD in obtaining early and efficacious intervention is a family’s ability to bridge the gap between initial diagnosis and the initiation of interventions that are consistent with ‘best practices’.  Unfortunately, to date there has been limited research examining the factors that influence a family’s ability to initiate early and efficacious intervention. 

Objectives: To describe the rates of treatment initiation and services received in the first six months after initial ASD diagnosis and to preliminarily describe characteristics associated with differential rates of treatment initiation.

Methods:  Participants included 17 children and their families who were diagnosed with Autistic Disorder or PDD-NOS for the first time between 18 and 42 months of age.  After initial diagnosis parents completed questionnaires selected to assess autism-specific behaviors and adaptive behaviors, family strengths and stressors, perceived strengths and weaknesses in services, and treatment types, hours, and when initiated.  Children underwent a developmental and diagnostic evaluation that included the ADOS and Mullen Scales of Early Learning.  At 2, 4, & 6 months following the initial session, parents completed a treatment history questionnaire and at 6 months completed a phone interview.

Results: More than 60% of children in the study received 0-3 hours of treatment per week before being diagnosed.  Six months after diagnosis 27.2% of children still received only 0-3 hours.  It appears that children receive variable rates of treatment (0-30 hrs/week) at a 6-month follow-up. There was a significant increase in the overall number of treatment (educational/services) hours received per week, t(14)=-2.95, p=.01, between time of diagnosis and 2 month follow-up.  There was a significant increase between the time of diagnosis and the 6 month follow-up in the overall number of treatment (educational/service) hours received per week, t(14)=-6.18, p>.001.

Conclusions: Determining what influences families’ ability to initiate treatment is critical to children with ASD’s long-term prognosis.  The current study found that families do initiate different rates of treatment for their children.  Although the rates of treatment initiation increase over time after first diagnosis, a sizable portion of children are still receiving limited services 6 months after initial diagnosis.  Current data suggest identifying the multisystemic issues that affect treatment initiation is complex and may not be tied to any one variable.  Attending school appeared to be the one factor that systematically increased a child’s use of treatment services. Preliminary survey suggests family stress, acceptance of diagnosis, and financial factors influence treatment rates.