Rehabilitation issues in autism spectrum disorders

Our purpose in this editorial is to highlight issues related to the rehabilitation of individuals diagnosed with an autism spectrum disorder (ASD). We first provide an overview of what is known regarding the epidemiology of ASD, and then a discussion of rehabilitation priorities. Our hope is to stimulate research towards identifying rehabilitation priorities that parents have for their children with ASD.

ASD is part of the broader category of pervasive developmental disorders (PDD). The term ‘ASD’ is an umbrella term that refers to a range of neurodevelopmental disorders including autism, Asperger's syndrome and pervasive developmental disorder not otherwise specified (PDD-NOS) [1], [2]. Although PDD also includes the diagnoses of childhood disintegrative disorder (CDD) and Rett's syndrome, these two diagnoses are not commonly referred to as ASDs. The frequent omission of CDD and Rett's syndrome from under the ASD umbrella is likely due to differences in their developmental trajectory, aetiology and diagnostic criteria, compared to that of the seemingly more closely related autism, Asperger's syndrome and PDD-NOS. However, the exact function and validity of the term ‘ASD’ and the practice of differentiating between the three ASD sub-types are current subjects of debate [1], [6–8].

The prevalence of ASD appears to have increased substantially over several decades and may be as high as 1 in 150 children [6–8]. In families with one child with ASD, the prevalence rate for their sibling is 20–50-times higher than that of the population base rate [9]. Whether the reported increase is a result of actual prevalence or a combination of factors such as broadening diagnostic criteria, increased awareness and changes in relevant policy is currently unknown [6–8]. The precise aetiology of ASD is similarly unknown; however, it is likely multifactorial, with many agents, genetic and environmental, possibly effecting the presentation of symptoms [9–11].

ASDs are usually diagnosed during childhood and are characterized by a triad of core symptoms that include; qualitative impairment in social interaction (e.g. failure to develop peer relationships), delays in the development of communication (e.g. limited or total lack of spoken language) and restrictive interests and/or repetitive body movements (e.g. rocking torso back and forth) [12], [13]. In addition to these diagnostic characteristics, individuals with ASD are also more likely to suffer from intellectual disability [14], [15], co-morbid psychiatric conditions [16], delayed and abnormal development of motor behaviours [17] and a lack of imaginative play [18]. These symptoms usually persist across an individual's lifespan [2], vary across diagnostic sub-type [3–5] and influence long-term outcomes such as potential for independent living and employment [19].

However, early intervention utilizing applied behaviour analysis (ABA) and delivered within natural contexts (e.g. implemented by parents within the home) may result in significant improvements in IQ, language, adaptive behaviour and even a change in ASD diagnosis [20], [21]. Particularly for young children, parents are the natural source of instruction in language and socialization and parental involvement in treatment is considered essential to successful intervention programmes for children with ASD. Therefore, rehabilitation programmes should be developed through a collaborative approach between parents and professionals [2], [22–24]. Subsequently, it seems critical for professionals to identify the rehabilitation priorities that parents have for their children with ASD [22–24].

Given the importance of parental input, it is not surprising that some empirical research aimed at identifying parent priorities has been conducted with children with ASD [25]. In one such study 22 parents of children with ASD identified communication, maladaptive behaviour, play skills and social interaction to be high priorities [23]. A large study involving 350 parents in the UK examined parent satisfaction levels regarding their child's educational programme and identified social development and social relationships to be high parent priorities [26]. A similar study conducted within the US involving 45 families with children with ASD also identified social skills to be the highest treatment priority followed by communication skills, life skills (e.g. dressing, cooking) and then reduction of maladaptive behaviour [27]. In other studies, sleep disturbances and food refusal have been identified as significant sources of parental stress [28],[29]. Behaviours that result in high levels of parent stress would seem likely to be high rehabilitation priorities for parents even when these behaviours are not part of the triad of core ASD symptoms, perhaps particularly so when these behaviours aversely affect child health (e.g. food refusal).

Thanks to previous research, much is known regarding treatment for the symptoms of ASD (e.g. positive effects of early parent implemented intervention). As we continue to build upon this knowledge base it would seem important to further consider the rehabilitation priorities parents have for their children. Although several quality studies have begun to address this question, more empirical research towards identifying parent priorities in the treatment of their children with ASD remains warranted. Future research in this area could explore possible interactions between ASD characteristics, specific child deficits/problems and parent priorities. Information of this type would likely enable professionals to more efficiently and effectively target rehabilitation efforts to high parent priority areas. Educational and rehabilitation programmes designed with likely parent priorities in mind prior to enrolling clients/students may ultimately be viewed by parents as more valuable which, in turn, may lead to increased parent involvement. Improved alignment between parent priority and rehabilitation efforts may also result in reduced parental stress, increased parent satisfaction with their child's treatment and, perhaps, more efficient and effective rehabilitation programmes.