Parents' Advice for Professionals Working with Children with Autism Spectrum Disorders and Their Families

Background:  Although research on “best practices” in working with children with Autism Spectrum Disorders (ASD) and their families is burgeoning, few studies to date have investigated the recommendations of parents of children with ASD on how professionals can be most helpful to them.  As parents often report relying heavily on professionals when first suspecting that their children may have ASD, effective professionals may be able to encourage earlier diagnoses, selection of evidence-based treatments, and other beneficial actions associated with more positive outcomes in children.  Parents’ perspectives on the benefits and drawbacks of various professional practices can enhance the responsible establishment of true “best practice” guidelines for working with children with ASD and their families. 

Objectives:  To outline advice for professionals offered by parents of children with ASD.   

Methods:  Participants were 19 parents (89% mothers) of children with ASD under age 6 years.  Parents ranged in age from 18 to 54 years and had a mean age of 35 years. Parents’ self-identified ethnic backgrounds included White (63%), Arab (10%), Chinese (10%), Metis (5%), South Asian (5%) and Multiracial (5%).  Most parents (92%) had some college education or more and their family incomes ranged from under $25 000 (23%) to over $75 000 (35%), with a mean of $53 560 (Canadian).  Their children (86% boys) ranged in age from 23 to 70 months. Participants completed demographic questionnaires and semi-structured interviews regarding their recommendations for professionals (e.g., “How can professionals best communicate treatment information to parents?”) and their treatment selection for their children (e.g., “What were the main sources of information you used in selecting treatments for your child?”).  Qualitative data were analyzed using thematic analysis and excerpts from parents’ interviews were selected to illustrate the various themes that emerged.

Results:  Preliminary results support the notion that parents often rely heavily on professionals’ recommendations when making decisions regarding their children with ASD.  Parents recommended that professionals inform parents as soon as the suspicion of ASD arises, that more focused ASD-related training be provided to paediatricians and family physicians, that professionals use lay terms when communicating with parents, and that professionals provide parents with written information on ASD and community resources prior to or immediately upon diagnosis.  Parents also reported having more trust in professionals who were empathic, knowledgeable, approachable, and who worked collaboratively with them to help their children.  Thematic analysis is ongoing for 7 participants.

Conclusions:  The quality of parents’ relationships with professionals appears to be of great importance when parents make assessment and treatment decisions regarding their children with ASD.  In addition, the difficulty that this highly educated group of parents often experienced with understanding information from professionals indicates that this information should be communicated in more accessible formats.  Greater educational opportunities for both parents of children with ASD and professionals from a variety of fields may also be beneficial.