What's Happening in the World of Autism?
Current research issues have included the nature of the spectrum, gene studies, the core impairments, anxiety and emotional regulation and supporting children with ASDs in school.
Asperger's Syndrome (AS) was included in the latest edition of the diagnostic system for the first time in 1994. It is distinguished from ‘autistic disorder’ in two areas: 'normal early language development’ and normal or above average intelligence; thus only early language development differentiates it from high-functioning autism (HFA). Individuals who fail to meet the criteria for autistic disorder or Asperger's Syndrome, but present with one or more of the triad of impairments, may be diagnosed as Pervasive Developmental Disorder Not Otherwise Specified (PDDNOS.) This little researched category also includes 'atypical autism' indicating the presence of two of the impairments, a sub-threshold pattern of characteristics or later onset/identification. The term 'autistic spectrum disorders' (Wing, 1996) is often used as an umbrella term to cover autism, Asperger's syndrome and PDDNOS.
Whilst a few writers believe that ‘autistic disorder’ is separate to ‘Asperger's syndrome,’ others propose that the broader definition of autism based on the triad of impairments in social understanding, social communication and a tendency for inflexible patterns of thinking and behaviour is more appropriate. This is because it is now recognised that autism is a spectrum disorder in which classic ‘Kanner autism’ and Asperger's syndrome may be two of a range of manifestations. Studies have revealed that who diagnoses and when can affect the diagnosis amongst higher functioning children. Children who were originally diagnosed with autistic disorder may “jump” to the Asperger’s trajectory as they acquire language (Reitzel & Szatmari, 2003). Adaptive-functioning is in adulthood is similar for individuals who were previously identified with HFA or AS in childhood. Studies also show similar patterns of cognition, sensory processing and socio-emotional relating amongst children with HFA and AS. There is consensus that problems with socio-emotional relating are cardinal, occurring across the spectrum.
Gene and family studies
A study of the genes that may cause a disorder is the study of the genotype, with a phenotype referring to how the genotype is expressed. The replicated evidence from both twin and family studies undertaken in the 1970s and 1980s indicated both strong genetic influences and the likelihood that they applied to a phenotype that was much broader than the traditional category of autism. Current genetic studies have found a number of genes that are associated with ASDs. Evidence would indicate that the distinct variants are associated with different gene combinations that arise from the phenotype, thus triggering various neurological responses at differing times of development. With up to twenty possible genes for autism, a combination of five may lead to an autism spectrum disorder.
Genetic characteristics may be inherited or one-off and there are cases with no apparent genetic link, but other associated pre-birth traumas that could also trigger an atypical developmental pathway (Keane, 2007). Whilst sharing some common characteristics, 'subtypes' would thus vary across a broad spectrum of disorders. Several major research studies are tracking down the genes and their combinations.
The contribution of autobiographical perspectives
Temple Grandin (1996) reports that she 'thinks in pictures' using visual imagery to develop category knowledge. Professor Grandin is a world expert in her field, the design of livestock equipment; she also has autism. Her comment encapsulates the essence of what it is like to have autism, providing an insider’s view of an atypical learning style. During the last decade ASDs have been increasingly conceptualised as a different way of processing and understanding, rather than a simple deficit account, with individuals having learning strengths as well as difficulties. A contribution to this shift has been the descriptions found in autobiographical accounts that highlight strengths, challenges and underlying processing (Grandin, 1996; Sainsbury, 2000; Lawson, 2001; Shore, 2001). The contribution of these perspectives is being recognised as both prompting and complementing the traditional literature.
Although early clinical criteria for autism specified disturbances in sensory modulation, a line of research did not develop until autobiographical accounts began to appear in which sensory processing was highlighted. Childhood recollections describe visual distortions, tactile defensiveness and sound sensitivity. Reports have been complemented by retrospective parental accounts and home movie studies that found characteristics including reduced eye contact, unusual motor movements and abnormal response to sound in infants who were later diagnosed with an ASD. Confirming the evidence from first hand accounts and infancy studies, recent survey investigations have found a significantly higher incidence of sensory sensitivities among the children with ASDs than age-peers (Keane, 2004).
A considerable body of research has demonstrated that individuals with ASDs have uneven patterns of development, with strengths in rote memory and/or visual processing and in some cases, savant skills. Studies have also found ‘executive dysfunctions’ in ASDs (Ozonoff, South & Provencal, 2005). Executive-functioning embraces processes underlying goal-directed behaviour and higher order thinking including attention shift, response inhibition, planning, working memory, flexibility, generating novel ideas and problem-solving. Impaired development of executive functioning is associated with an atypical learning style characterised by problems in the generation of novel ideas, organising information, generalisation (transfer of knowledge across situations) and a tendency for inflexible learning patterns.
Research conducted over the past twenty years demonstrates that children with ASDs have delayed development of Theory of Mind (TOM). This is the process associated with perspective-taking ability, and encompasses being able to infer mental states (beliefs, desires, intentions, imagination, emotions etc) that cause action (Baron-Cohen, 2000). Until recently it was theorised that TOM may be a core deficit if ASDs, however it is now evident that the delay is one aspect of underlying difficulties in socio-emotional relating. Later research revealed that whilst some individuals with ASDs pass advanced tests of theory of mind, even the most able experience difficulties where verbal and cognitive mediation are not possible. The search for diagnostic indicators during the 1990s reveals the early presence of impairments in socio-emotional relations prior to the emergence of language and theory of mind (Chawraska & Volkmar, 2005).
The emotionally expressive transactions and adjustments between infant and parent are limited or absent in ASDs and babies may not be as well socially ‘attuned’ as other babies (Hobson, 2002). Early impairments in social orienting deprive the infant of social information, further affecting development of social competence. The ‘enactive mind’ theory (Klin et al., 2005) proposes that very early derailment of social salience systems is followed by a path seeking physical entities rather than people, thus missing out on social experiences during a period of brain plasticity. Atypical socio-affective relating (understanding expression of emotions and expressing emotions) result in a different learning trajectory, with social skills learnt cognitively rather than intuitively.
Autobiographical recollections describe lack of meaning attached to, and sometimes fear of, social contact during early childhood, Accounts report dealing with social interactions as stressful, but being quietly involved in their own interests and activities as calm and soothing. As they become older more able individuals with ASDs may become aware that they are different and desire some social contact, but with a lack of ability to do so. There is a desire to comply and conform, and they may become upset and not understand why they are rejected or teased. Individuals with ASDs sometimes describe themselves as feeling like aliens when trying to understand social interactions. Temple Grandin has described how she uses logic to understand social situations, and stores information to recall when similar situations arise.
Anxiety and emotional regulation
Although one of the defining diagnostic criteria, repetitive and restricted behaviours have received much less research interest than communication and social development. Evidence suggests a developmental course characterised by simple repetitive routines in younger or less able children and the development of special interests in higher-functioning older children and adults. Repetitive questioning and obsessive involvement in special interests becomes more pronounced when a person is anxious. Thus it could be that it is not change per se that is problematic for individuals with ASDs, but problems with organisation, sensory overload and/ or unpredictability. Studies have found elevated levels of anxiety in children with ASDs compared to typically developing peers (Chalfant, Rapee & Carroll, 2006).
The core impairments of ASDs are also associated with challenges in developing emotional regulatory capacity. Emotional regulation refers to an individual’s ability to experience, recognise, express and regulate emotions effectively. Self-regulation encompasses tolerating social and sensory experiences, regulating arousal levels, using language to guide behaviour and problem-solving ability. The foundations of self-regulation emerge in the first few months of life when the infant begins to take an interest in the world, and capacity develops as the result of interaction between the infant’s maturing executive functions and their interactions with the environment. A recent study of 65 infants later diagnosed with ASDs found high levels of disordered self-regulatory indicators (Gomez & Baird, 2005). Findings support previous anecdotal evidence and theoretical speculation of impaired development of emotional regulation (Laurent & Rubin, 2004). As children mature, their emotional regulation capacities become increasingly sophisticated. Equally, if not more daunting for children with ASDs, is the capacity for mutual regulation, as it takes place in the social context and involves expressing emotions, discerning what is helpful or threatening and communicating requests for assistance. Clinical evidence suggests that even when individuals with ASDs are able to communicate in appropriate ways when in a well-regulated state, extreme dysregulation such as fear or panic may result in the use of inappropriate behavioural responses.
Children with ASDs in school: A new line of research
Biographical recollections have described challenges faced by even the most able individuals with ASDs in school. First hand accounts describe difficulties in filtering out irrelevant stimuli and being distracted from activities, with sensory stimuli at times becoming overwhelming, causing confusion, overload and fear. It is only very recently, however, that research has been conducted in situ. Ashburner & Ziviani’s (2007) study of 28 high-functioning children with ASDs enrolled in regular schools is the first to examine the possible impact sensory processing in the classroom. Results of the study showed that the properties of regular school classrooms, such has background noise, visual clutter and unpredictable tactile input were found to be related to challenges in attending and subsequent performance of children with ASDs to a greater extent than the child’s IQ. This accords with the need to conduct sensory audits in classrooms found in recommendations from service providers and persons with ASDs.
Observations conducted in schools demonstrate that peer interaction in children with ASDs is of lower frequency and poorer quality than peer counterparts. Whilst play is often determined by the proclivity of the children with ASDs, ecological factors including the setting and role of peers and adults may influence frequency, duration and quality of interactions. Disclosure and peer education have been shown to foster understanding and acceptance by peers. Training of specific functional social skills and opportunities to practice skills with peers are also beneficial. Findings of better social response following paired or group academic work and using special interests to foster playground interaction indicates social interaction should not be taught in isolation. To date there has been no published material that has examined the role of adults in supporting social development actually conducted in schools (Keane, 2007). Writers with ASDs have commented positively on teachers who provide scholastic and social support, and negatively on the effects of teachers who try to ‘cure’ their autism, suggesting that support involves working with rather than against their autism. Some accounts also note the very significant role of teachers who took a special interest in them, providing a turning point in developing their assets whilst also recognising their remedial support needs.
Recent research has focussed on several areas. These include:
- The nature of the spectrum
- Genetic studies
- Research of core impairments
- Anxiety and emotional regulation
- Studies conducted in schools
The literature is also enriched by the contribution of autobiographical accounts of ASDs.
- American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders, 4th. Edition (DSM-IV), Text Revision, Washington, D.C: Author. American Psychiatric Association.
- Ashburner, J. & Ziviani, J. (2007). Creating better educational futures by accommodating the sensory processing styles of children with ASD in the classroom. Biennial conference of Autism Spectrum disorders. (Gold Coast, Australia: 14-16th March)
- Baron-Cohen, S. (2000). Theory of mind and autism: A fifteen year review. In S. Baron-Cohen, H. Tager-Flusberg and D.J. Cohen (Eds.) Understanding other minds: perspectives from developmental cognitive neuroscience. (pp. 3-20) Oxford: OUP
- Chalfant, A., Rapee, R. & Carroll, L. (2006). Treating anxiety disorders in children with high-functioning autism spectrum disorders: A controlled trial. Journal of autism and developmental disorders, 33, 283-298
- Chawraska, K. & Volkmar, F. (2005). Autism in infancy & early childhood. In F. Volkmar, R. Paul, A. Klin & D.J. Cohen (Eds.), Handbook of autism and pervasive developmental disorders (3rd Edition, pp. 223-246). New Jersey: J. Wiley.
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- Grandin, T. (1996). Thinking in pictures: and other reports from my life with autism. Vintage books. New York.
- Hobson, P. (2002). The cradle of thought. London: Macmillan.
- Keane, E. (2004). Autism: The heart of the disorder? Sensory processing & social engagement — illustrations from autobiographical accounts and selected research findings. Australian journal of early childhood, 29, 8-14.
- Keane, E. (2007). The integration of students with autism into N.S.W. primary schools: a multiple-case study of inclusion. Final draft of PhD thesis. Charles Sturt University, N.S.W. Australia
- Klin, A., Jones, W., Schultz, R. & Volkmar, F. (2005). The enactive mind - From actions to cognition: Lessons from autism. In F. Volkmar, R. Paul, A. Klin & D.J. Cohen (Eds.), Handbook of autism and pervasive developmental disorders (3rd Edition, pp. 473-514). New Jersey: J. Wiley.
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- Ozonoff, S., South, M. & Provencal, S. (2005). Executive functions. In F. Volkmar, R. Paul, A. Klin & D.J. Cohen (Eds.), Handbook of autism and pervasive developmental disorders (3rd Edition, pp. 606-627). New Jersey: J. Wiley.
- Reitzel, J. & Szatmari, P (2003). Cognitive and academic problems. In M. Prior (Ed), Learning and behaviour problems in autism (pp. 35-54). New York: Guildford Press.
- Sainsbury, C. (2000). Martian in the playground. Understanding the schoolchild with Asperger’s syndrome. Bristol, UK: Lucky Duck Publishing.
- Shore, S. (2001). An interview with Stephen Shore: Understanding autism spectrum - What teachers need to know. Intervention in school and clinic, 36, 293-299.
- Wing, L. (1996). The autistic spectrum: a guide for parents and professionals. London: Constable.
- Wray, J. & Williams, K. (2007). The prevalence of autism in Australia: Can it be established from existing data? Autism Advisory Board on Autism Spectrum Disorders