Autism Spectrum Disorder and the Theories of Vygotsky
Research over the past decade has acknowledged the impacts of characteristics and life-functioning for individuals on the autism spectrum. Models of support or interventions strategies have been researched but little, or limited practical or resourced models appeared as accessible for families of older youth. The intention of this research paper was to investigate a specific activity group for youth on the autism spectrum. The group runs concurrently with a parent group and is funded through a respite funding provision. The research identified three main themes that delineate the activity group as relationships, successes and issues.
Using a mixed methods design, eighteen individuals were surveyed to ascertain their opinions on the activity group and four individuals with varying roles in the group were interviewed to discover what the participant considered were the best aspects of the group for them, why the group worked, what might change and if they had any suggestions for group activity or structure. The sociocultural theory of Lev Vygotsky (1896-1934) and the work of psychologist Dr Tony Attwood were also examined to establish links between theory and practice in the understanding of the social implications of Autism Spectrum Disorder.
INTRODUCTION – overview and understanding of ASD Autism Spectrum Disorder (ASD), while not a specific diagnostic category, describes a spectrum or range of cognitive and communicative abilities with consequential patterns of behaviour in areas of social interaction, communication, interests and activities within the range of Pervasive Developmental Disorders, which include Autism and Asperger syndrome. ASD impacts across the lifespan on an individual’s life functioning. (Attwood, 2007).
It is estimated that Autism occurs in approximately 1-2 individuals in every 1000 people, and Aspergers syndrome in [at least] 1 individual in every 500 people. Interestingly, there are four times as many males as females diagnosed with autism and 10 times as many males as females diagnosed with Aspergers syndrome. (Autism SA, 2009). Attwood (2007) believes this may be because of different social interaction strategies used by females. His work as a clinical psychologist in the disability sector specifically working with individuals on the autism spectrum is acknowledged by his peers and valued by researchers, families and organisations.
The characteristics of Autism Spectrum Disorders (ASD) include the following diagnostic criteria: qualitative impairment in social interaction (e. g. expression, eye contact, as well as lack of peer relationship), restricted repetitive and stereotyped patterns of behaviour, (including focus of interests, use of gestures and activities); and clinically significant impairment in social, occupational or other important areas of functioning. (American Psychiatric Association, 2000 cited in Attwood, 2007). Key Words Autism spectrum disorder, Aspergers syndrome, youth, adults, activity groups, parent supports, interventions, social integration.
Introduction When writing about the children with a disorder later named for him, Hans Asperger stated: “the nature of these children is revealed most clearly in their behaviour towards other people. Indeed their behaviour in the social group is the clearest sign of their disorder. ” (cited in Attwood, 2007, p 55). Social interaction plays a major part in the cognitive development of a child, and Lev Vygotsky ‘s (1896-1934) sociocultural theory purports the view that children are inherently social beings who are influenced by their social environment and also cause reciprocal changes in their environment .
Vygotsky’s work included the paradigm of ‘disontogenesis’ as the concept of primary ‘defect’ or difference (that is impairment due to biological cause), and secondary defects or difference (that is misrepresentation of psychological function due to social factors) and the interaction between these two spheres. (Gindis,1995). Vygotsky, (Gindis, 1995), noted that it is not until impairment is brought into the social context that it is perceived as ‘abnormal’. This implicitly links with the observations of Attwood (2007 56) which describe Asperger syndrome (as part of the autism spectrum of characteristics) and social interaction as “when someone is alone, relaxed and enjoying a special interest, the characteristics … do not cause clinically significant impairment in social, occupational or other important areas of functioning. ” Vygotsky also mooted the use of alternative and equivalent modes of learning and interactions, using various ‘tools’ including means of communication, and ‘mediated learning provided by adults’. (Gindis, 1995).
These modes of learning appear to also link with Attwood’s “Emotional Toolbox” as strategies which influence cognitive development, behaviour and social interactions. (Attwood, 2007 p 160). Themes Three main themes have emerged in the search of the literature in relation to groups and family support for youth on the Autism spectrum. The first theme identified by the research literature is the importance and breadth of support for the young people on the Autism spectrum; and of that provided for their families.
A pilot study by McLeod (1999) over three years, with a sample of eight adults, using case studies and both qualitative and quantitative methods of research (including questionnaires, interviews and follow-up) described parents of individuals on the Autism spectrum, as ‘the primary caregivers of their adult sons and daughters’, however, Howlin (2003 cited in Barnhill, 2007) describes a need for independence and less desire for direct adult supervision as common to this age group.
While in the research described by Jennes-Coussens, Magill-Evans and Koning (2006) about Quality of Life factors for 12 young men with Asperger syndrome, (using mixed methodology surveys and interviews) a high dependence on the support of their families was observed, with the majority still living at home or requiring significant assistance with independent living skills. A decade on, Barnhill (2007, p 118) reported that little had been published about the adult outcomes for people with Autism spectrum disorder, (ASD), and linked ‘adequate function’ with the “degree of support ffered by families. ” Barnhill (2007, p122) also suggests that professionals “need to be willing to expand their knowledge of ASD” and also view their interactions with the families of individuals to “provide valuable insights” (p 124). Nevertheless, Woodgate, Ateah and Secco (2008) (in a hermeneutic phenomenological study of 21 parents of 16 families) state that ‘research directed at understanding what it is like to be a parent of a child on the autism spectrum has not moved beyond researching stress and adjustment’.
Therefore while there is some acknowledgement that the support of family is vital for the survival and accomplishments of young adults on the autism spectrum, there is either limited or no documented research on provision for that support either for the individuals or their families. A second premise in the literature is the mixture of intervention techniques or methods used to mediate the social difficulties experienced by youth (and adults) on the Autism spectrum (ASD).
Common to the literature is the importance of understanding the ‘unique profiles’ of those people living with ASD (McLeod, 1999; Muller, Schuler & Yates, 2008) and the value of groups as intervention and support models (Weidle, Bolme & Hoeyland, 2006 and Muller et al 2008) however, there is an acknowledged lack of ‘documentation dealing with peer support groups .. especially for adolescents.. and their parents’. (Weidle et al 2006) and also no research across the lifespan (Barnhill, 2007; Woodgate et al, 2008).
With the increased impacts of isolation as the person on the Autism spectrum ages, however, recommendations for supportive practice are limited, and most emphasis appears to be on hidden reliance on family for generic support across all life domains, without provision or available resources to support that reliance. The third motif identified by the literature are the impacts of a lack of peer relationships and supportive environments for individuals (children, youth and adults) on the Autism spectrum.
These impacts can be as diverse as complete social isolation to mental health issues such as depression and anxiety. Lifestyle impacts can be lack of familial independence, mal-employment choices and substandard housing. (Barnhill, 2007). Literature describes (Barnhill 2007; Jennes-Coussens et al 2006; McLeod, 1999) that it is possible, with support, to acquire skills to mediate social interaction, although each research paper has a different methodological approach to the skill acquisition process.
Muller (et al, 2008) described their ‘intervention-orientated research’ of 18 adults using mixed methodology and the ‘voice’ of individuals on the Autism spectrum, with stated strategies rated as most ‘effective’ by the individuals themselves to counter the potential of long term dependence on family support, the lack of access to any services for assistance and positive support and to offset the challenges faced with communication and connectedness. The literature demonstrates a dearth of ‘voices’ or input from those individuals (or their family members) on the autism spectrum about positive assistance provided or accessed long term.