Negotiating knowledge: parents’ experience of the neuropsychiatric diagnostic process for children with autism

Abstract

The parents expected intervention to start directly after diagnosis but felt they had to fight to obtain the resources their child needed. After the process, they described that they felt empowered but still alone, i.e. although they received useful and important information about their child, they were left to manage the situation by themselves. As for clinical implications, the study points to the necessity of developing routines to support the parents during and after the diagnostic process. Recommended measures include developing a checklist outlining relevant contacts and agencies, establishing a coordinator responsible for each child, dividing the summary meeting at the clinic into two parts, making more than one visit to the preschool, and providing a parental training programme.

A 6-year follow-up of children assessed for suspected autism spectrum disorder: parents’ experiences of society’s support

“…Habilitation services are overloaded and in the midst of a generational renewal, ie, there is neither staff nor competence to provide the support and interventions that CNC has shown in the assessment. [4]X was initially left completely without help from habilitation services and 2–3 years ago she was dismissed from there as she X did not belong to the right “customer group”. I always expected the Swedish Social Insurance Agency to be the big, heavy battle.…”

“…Habilitation services are overloaded and in the midst of a generational renewal, ie, there is neither staff nor competence to provide the support and interventions that CNC has shown in the assessment. [4]…”

“…Having a child with developmental problems, especially autism spectrum disorder (ASD), defined as severe problems with communication and social interaction as well as restricted and repetitive behavior,3 has been shown to have a significant impact on the family’s well-being 4–6. Parental stress and fatigue are commonly related to concerns of raising the child, especially when the child has very challenging behavior.…”

“…Previous research has reported frustration among parents struggling to find adequate help regarding education for the child, therapists, or other forms of support 8,9. Overall, many parents have reported a lack of help from professionals after the diagnostic process and that they are expected to take a disproportionate responsibility in addition to their parenthood 4,10…”

“…With some exceptions,2,4,31 the research focusing on parents’ experiences of the process associated with receiving an ASD diagnosis is still limited. Existing studies directed at parental perception of receiving diagnoses tend to focus on the disclosure of the diagnosis rather than the process preceding and following the disclosure 31.…”