Parent voices: difficulty in accessing behavioral intervention for autism; working toward solutions

Abstract

The history of autism treatment has been dominated by a series of failed treatments, passing fads, and misinformed theories of etiology. With the advances in teaching methods derived from the science of Applied Behavior Analysis however, significant remediation of the disorder is now possible. Yet at present parents or caregivers still face serious challenges in identifying scientifically‐validated treatment models, and in securing competent and well‐trained therapists. Four parents report on these challenges, on the steps they have taken to mitigate these difficulties in their own families, and on the long‐term solutions they are attempting to implement in the wider community. Copyright © 2001 John Wiley & Sons, Ltd.

Bridging the Research-to-Practice Gap in Autism Intervention: An Application of Diffusion of Innovation Theory

“…Practitioners may perceive autism interventions as overly burdensome (Maurice et al 2001). For example, strategies based on applied behavior analysis demand high and consistent effort (Rakos 2006) and take considerable training to master (Lerman et al 2004).…”

Mind the gap: an intervention to support caregivers with a new autism spectrum disorder diagnosis is feasible and acceptable

“…Another factor that may limit service engagement for low-resource families is their distrust of the medical system [16], based on negative experiences or mismatched cultural beliefs. Distrust of the service system is exacerbated by poor communication about diagnosis and treatment, inadequate access to treatment, and limited involvement of parents in decision-making about services [17][18][19]. For example, parents have reported that their children's needs can become secondary to the battle over the cost of intervention and provider preferences for certain interventions [18].…”

“…Distrust of the service system is exacerbated by poor communication about diagnosis and treatment, inadequate access to treatment, and limited involvement of parents in decision-making about services [17][18][19]. For example, parents have reported that their children's needs can become secondary to the battle over the cost of intervention and provider preferences for certain interventions [18]. Further, interventions for children with autism often are not culturally sensitive in a way that meets the needs of parents of color or underresourced families [20,21].…”

The curious selection process of treatments for Autism Spectrum Disorders

“…The claims made by developers of unsubstantiated treatment methods often consist of testimonials, not research or systematically collected data. Parents may be afraid of ''missing out'' on the latest purported treatments, thus trying a number of alternative interventions and sometimes keeping this information from doctors or other professionals for fear of criticism (Maurice, Mannion, Letso, & Perry, 2001;Metz, Mulick, & Butter, 2005;Simsek & Koroglu, 2012;Wong & Smith, 2006).…”