Effective Disclosure and Parent Reaction to ASD Diagnosis

Background: The diagnostic assessment experience itself often represents a pointed stressor for families of young children with ASD and as such holds great potential for readily applicable clinical research.  The formal diagnosis of ASD, even when suspected for lengthy intervals of time, contributes to an array of reactions in caregiving systems both in the short- and long-term.  Unfortunately, to date very little empirical work has been conducted regarding effective disclosure of diagnoses of ASD, child functioning, associated parenting stress/engagement, and involvement in clinically indicated interventions. 
Objectives: In this study we explored parent perceptions of effective characteristics of diagnostic disclosure as well as emotions and thoughts surrounding disclosure. 

Methods: All families coming through a university affiliated ASD clinic and receiving a diagnosis of ASD were asked to complete a survey - The Diagnostic Process Questionnaire [DPQ] - regarding characteristics of diagnostic process, questions about what they wished had been a part of the diagnostic event, perceptions of support  surrounding the diagnostic event, as well as thoughts and feelings at the time of diagnosis.
Results: 76 families completed the DPQ survey.  Families frequently endorsed long-waits (54%> 6 months; 41% > 1 year) and visiting numerous service providers (61% ≥ 3 ; 22% > 5) from the initial time of mentioning concerns to a professional to receiving a formal diagnosis.   When asked to reflect on ideal characteristics of evaluation and feedback an overwhelming majority of parents (96%) reported they would want to receive diagnostic feedback the day of the child’s assessment.  Although a majority of caregivers had support persons present on the day of the diagnosis (88%), those who did not frequently endorsed wishing another support person was present (67%).   Of those parents whose child was in fact present in the room for the ASD diagnosis (65%) most noted that they would still want this to be the case (82%). 
Parents generally reported positive support from their family concerning the ASD diagnosis (76%); however, they frequently endorsed that specific members of their family/support system (i.e., spouse, parents, in-laws) were not supportive of the ASD diagnosis itself.  45% of parents did not report strong support from their pediatrician about their child’s ASD diagnosis.
When inquiring of feeling and thoughts at the time of ASD diagnosis, many parents reported feeling prepared and indicated that the diagnosis was not surprising or shocking, yet at the same time extreme feelings of distress were often reported. 
Conclusions: Research examining reactions to the diagnostic assessment process itself in association with clinical characteristics of the child and other family process factors could potentially provide information that clinicians could utilize in adapting the assessment process and recommendations to promote family specific engagement in intervention best practices.