The search for a timely diagnosis: Parents’ experiences of their child being diagnosed with an Autistic Spectrum Disorder

Abstract

Practitioners appear to be reluctant to diagnose and label children with ASD at an early age. This reluctance results in lost opportunities for early intervention and years of uncertainty and distress for families. Access to resources for diagnosis and intervention for children with ASD in South Africa appears to be limited to a few families. For this select population, many difficulties and much dissatisfaction with diagnostic processes remain. The study recommends enhancing awareness of ASD to facilitate early identification, and to strengthen the support offered to parents of children with ASD.

Autism spectrum disorder in sub‐saharan africa: A comprehensive scoping review

“…To date, eight papers on family perspectives have been published in SSA, seven from South Africa [Alli, Abdoola, & Mupawose, ; Du Toit & Kok, ; Fewster & Gurayah, ; Greeff & van der Walt, ; Kapp & Brown, ; Mitchell & Holdt, ; Olivier & Hing, ], and one from Kenya [Gona et al, ]. Qualitative and quantitative data were included in these articles, typically as in‐depth interviews, focus groups, written open‐ended questions, and questionnaires.…”

“…In South Africa parents reported lack of social support, limited knowledge about ASD, lack of practical assistance, and uncertainty about their child's prognosis [Du Toit & Kok, ; Fewster & Gurayah, ; Olivier & Hing, ]. Many experienced financial and marital strain in the context of raising a child with ASD [Du Toit & Kok, ; Mitchell & Holdt, ] and reported neglecting their own physical, emotional, and psychological needs [Fewster & Gurayah, ]. Parents felt unheard and inadequately informed by service providers, who often lacked knowledge about ASD and provided the diagnosis in a brash manner painting a bleak picture of the child's prognosis [Du Toit & Kok, ; Fewster & Gurayah, ].…”

“…Parents felt unheard and inadequately informed by service providers, who often lacked knowledge about ASD and provided the diagnosis in a brash manner painting a bleak picture of the child's prognosis [Du Toit & Kok, ; Fewster & Gurayah, ]. Parents reported significant delays in obtaining an ASD diagnosis, and highlighted the shortage of facilities and support services for children with ASD [Mitchell & Holdt, ; Olivier & Hing, ]. Parents noted their children had difficulty fitting into educational systems, and required specialized, individualized educational programs.…”

South African families raising children with autism spectrum disorders: relationship between family routines, cognitive appraisal and family quality of life

“…In South Africa, very little data on the incidence, prevalence and impact of ASD are available (Malcolm-Smith et al 2013). The disability-related services available to children with ASD and their families are sparse, and access to diagnostic, intervention and educational services is still a significant challenge for families (Grinker et al 2012;Mitchell & Holdt 2014). The few specialist public schools for children with ASD are mainly located in urban areas; they are overstretched and generally inaccessible to the majority of children who need them, and an estimated 135 000 children with ASD are not getting the specialised education that they need (Bateman 2013;Van Biljon et al 2015).…”

Children who screen positive for autism at 2.5 years and receive early intervention: a prospective naturalistic 2-year outcome study

“…There are considerable clinical experiences and research supporting the importance of early identification, information to parents and preschool staff, and the need for appropriate interventions in all children with ASD to provide support to children and families, ie, an autism-friendly environment 50,51…”