What is Autism Spectrum and how has our understanding of autism changed over time?

Autism is a neurodevelopmental condition generally identified during the early developmental stage of infancy and continues throughout one’s lifetime. It affects the way the brain processes information and manifests itself across a spectrum, with a wide range in cognitive, emotional, social, behavioural and affective domains. Autism spectrum (AS), or autism spectrum disorder (ASD) as it was previously referred, includes Autistic Disorder (classic autism), Asperger Syndrome, and Atypical Autism (Pervasive Developmental Disorder Not Otherwise Specified). Note that at this time, the cause of AS is unknown. There is much research focusing on the interplay of genetic factors, environmental factors, neurological factors, as well as “infectious, metabolic, and immunologic factors” (National Institute of Child Health and Human Development). Because of the wide range of characteristics, it is believed that more than one mechanism is likely to be involved. Research has been undertaken to determine if there is a causal relationship between AS and vaccinations. To date, the evidence suggests there is no connection.

Autism is divided into two main categories based on specific characteristics: social interaction and communication, and restricted and repetitive behaviours or interests. The American Psychiatric Association, in  its “Diagnostic and Statistical Manual of Mental Disorders” has identified the Autism Diagnostic Criteria (DSM-5) which is widely accepted as the benchmark for diagnosis of autism. Diagnosis is by observations, ideally by the age of three. This may include using a range of diagnostic instruments,  a formal observation by paediatrician or other qualified health provider using the DSM-5 criteria, differential diagnosis, and an Autism Spectrum Quotient tool in the form of a questionnaire to gather observational information from an individual, or their whānau/caregivers, teachers and other people who know the child.

There is a growing concern that the prevalence of AS is on the rise. However, it is not clear if the increased numbers are due to increased diagnosis rather than a higher rate of occurrence. There is no evidence that AS occurs with greater frequency in any one group of people, and therefore is not a factor of race, ethnicity, social or socio-economic group. Having said this, boys are more likely to display AS than girls (stats), siblings are statistically more likely to develop ASD than the general population, and there is a comorbidity between AS and some other developmental disorders.

Leo Kanner, an American psychiatrist, is widely considered the father of autism and indeed child psychiatry. He coined the term autism in 1943 following his study of eleven children with unique behavioural traits which he determined as a syndrome, clinically defined by  behaviour that is “governed by an anxiously obsessive desire for the maintenance of sameness that nobody but the child himself may disrupt on rare occasions” (Kanner, 1943). In fact, it is argued that Kanner was not the first to use the term “autism”, and further, he was not the first  to identify and attach a label to individuals exhibiting this particular group of behaviours. Controversy exists in the literature, whether Hans Asperger or the overlooked Georg Frankl first syndromised autism or if it emerged even earlier in the research of Bleuler (1911); Tramer (1924); Ssucharewa (1926); Bender and Schilder (1940) amongst others. The debate is not limited to who can legitimately claim first but also the different characteristics of the “sui generis” of autistic psychopathy, prodromal phase schizophrenia, autism, Asperger's and other syndrome coins and if these are in fact specific or define a broad spectrum of neurodevelopmental disorders. What is clear from the literature is that autism, historically, has been researched in terms of a medical syndrome, disorder, problem.

Autism Spectrum has often been framed using a biomedical lens. A biomedical viewpoint pathologises autism, defining it as a “complex neurobiological disorder” thus focusing on identifying the mechanisms that cause AS and how the condition can be remediated.  Much of the scientific research has used this deficit thinking model. Recent studies (Mole, 2017) propose  AS as a “positive identity”. Bervoet et.al (2020) asks if autism is merely a term denoting “behaviors [that are] deemed problematic in current societal circumstances”. This ‘social construction’ perspective of autism at the forefront of the neurodiversity movement, is increasingly reflected in the literature. Recent scientific studies adopt a mixture of both qualitative and quantitative research methodologies, that include the experiences and perspective of individuals and their families. 

The neurodiversity movement views individuals with autism (and other cognitive or neurological impairments) as normal expressions of the full range of neurotypical behaviours. The goal of neurodiversity is to “expand our definition of what is viewed as normal and acceptable” rather than to ‘fix’ individuals who exhibit what are deemed socially unacceptable behaviours. Sara-Jane Harvey, in the video 'Neurodiversity is Brain Diversity' shares Steve Silberman’s analogy of 'computer operating systems' to example the need for neurodiversity in the workplace and to dispel the myth of normalcy. Bervoet and Hans posit a biological-social conceptualisation that views autistic individuals as “moral agents who are not fully determined by their autism”. 

The NZ context

Different cultures have different perspectives on autism and these are perpetuated though parent support groups, self-advocacy groups, mass media and social networks (O'dell et. al., 2016). Neurodiversity is a continuum of competence (Armstrong, 2010) defined by cultural values. Kanorauā roro (diversity of the brain) captures the variability of individuals and the way they think, learn, understand and behave. Dr. Jill Bevan-Brown uses the analogy of Christmas lights to illustrate the tangle of terms associated with 'neurodiversity' and the confusion this can cause. She describes neurodiversity as neuro=related to nerves and diversity=variety, thus every individual is neurodiverse. In Māori culture, diversity is valued. Bevan Brown is concerned that in the education system in New Zealand, the term is specifically applied to those at either end of the neurodiversity spectrum, rather than all learners. When applied to all learners without judgement neurodiversity in an inclusive term.

Māori students with challenges to learning are doubly challenged because they are also disadvantaged by a Pakeha-centric education system that reflects Pakeha content, values, teaching practices, ways of learning and structures. This is contrary to the concept that the term 'neurodiversity' seeks to expound: that we are all equal and should be valued as equals and provided with education that is equitable.

Pacific students are likewise doubly challenged. Using a Pacific lens, individuals are viewed holistically, including their strengths and abilities and the multiple worlds they are a part of. Neurodiversity is seen as only a small part of the whole. Importantly, children are not seen as individuals but as part of the family unit and an extension of the family and therefore any judgements made about the child are also made about the family. Interventions must therefore be led and driven by the family. 

This view is consistent with a te ao Māori perspective which focuses on individuals having a “unique perspective on life” (Shaan Te Kani). In focusing on the challenges experienced by people with autism, there are often many strengths that are overlooked. In the New Zealand context, the term takiwātanga is used instead because it has a more holistic perspective, conveying positivity and inclusivity. Coined by Keri Opai from his phrase “tōku/tōna anō takiwā“ meaning ‘my/his/her own time and space’,  takiwātanga encompasses the idea that everyone is different, in contrast to the value laden ‘disorder’ or ‘disability’.  

It is clear that the language used to discuss and describe autism impacts individuals and their communities as well as people’s perceptions of autism generally. As discussed previously, there has been a distinct change in the language used in the literature which reflects the need to reframe the way we think about autism and indeed any other behaviours and challenges that fall outside of what is perceived to be ‘normal’ or neurotypical. That is, using language that models understanding of ‘people first’. 

The impact that autism can have on families, friends and community can be considerable. Vasilopoulou and Nisbet (2016) conducted a meta-analysis of research about the quality of life of parents with children with AS. Their findings suggest that the wellbeing of parents is seriously affected when compared with the rest of the population, and further, that this impacts the efficacy of parental interventions and ability to care for their children. Effects on parents and caregivers include “impaired mental and physical health, social isolation and lack of family coherence”. Vasilopoulou et. al. (2016) discusses a more holistic look at overall ‘quality of life’ which considers its “multi-dimensional character” and specifically focuses on the physical and mental health, and social functioning aspects. Their results conclude that factors such as increased stress and fatigue, social isolation as a result of “stigmatization, increased caregiving responsibilities and the high financial demands of caring for a child with autism impacted quality of life. Participants in the studies reported the physical toll has greater impact than the mental toll. Mothers tend to experience lower quality of life, perhaps due to having a greater role in day to day caregiving. Higher behavioural needs also impacted negatively on parental well being compared to parents of children with lower behavioural needs. Of interest are the contextual factors that Vasilopoulou et. al. (2016) found influenced wellbeing. These included income, employment, social support and participation in activities outside the home.

Parents are not the only people directly affected by individuals with AS. Siblings may also be adversely affected by the stress of having a brother or sister with AS. Research suggests that siblings may feel embarrassed, neglected, experience increased anxiety, guilt and loneliness (Dillenburger et. al., 2010). The potential of aggression such as physical and verbal harm and the unpredictability of incidents can lead to anxiety in siblings, affecting their overall well being. Some behaviours and the reaction of others can place additional responsibilities on a sibling. Gorjy (2017) interviewed 11 adolescents between the ages of 12 and 17 who had an AS sibling. Their analysis of responses identified six themes. The first outlines the challenges associated with “meltdowns”. The second focuses on their own life experience being ‘different’ from their peers due to their brother/sister being different; the different relationships they have with their sibling, who could be a source of pride or additional pressure; and themselves being different in terms of having a wider perspective and understanding of others. Participants reported having different social experiences, particularly with regard to outings and to less parental attention. Siblings reported adaptive strategies they have adopted to cope with the stress of having an AS sibling. These included withdrawing, becoming involved in activities outside the family sphere, and seeking out support from others. Many expressed the positive aspects of having an AS sibling and their affection for their brother/sister and the quality of this relationship associated with overall wellbeing. With all the focus on their ‘different’ experiences, participants expressed their view that this is their 'normal'. Implications of this research for teachers and specialist teachers to not only know the student with autism in your class but also to be aware of siblings of autistic students in their class.

Effective teaching strategies for students with AS

Increasing participation is integral to inclusive teaching strategies. This presents challenges, considering the quite diverse learning needs in an average classroom of up to thirty students.  Peter Farrell, identifies six essential components of inclusive practice:

• effective teamwork

• differentiated teaching

• school culture - promoting positive attitudes

• teacher professional development (inclusive practices)

• resources

• schools required to evidence inclusive practices for all students

In designing effective educational plans for students with AS, it is important to remember that while no two students with AS are alike, no one intervention will work for everyone. Research has identified a range of interventions that might be successful, particularly for younger, primary aged students. Lovannone et. al. (2003) conducted a meta-analysis of the research and from these, identified core features in common. They proposed six key components for effective teaching practice that can be used for AS students of all ages. These include "individualized supports and services for students and families, systematic instruction, comprehensible and/or structured environments, specialized curriculum content, a functional approach to problem behaviors, and family involvement" Lovannone et. al. (2003). They impress the importance of finding the right balance of these components by individualising programmes for each AS student.

'Individualized supports' means including the student and their family in establishing learning goals and teaching strategies; using high interest topics as contexts for learning; and having a strengths based approach. Like all students, engagement is a determining factor in successful learning outcomes. Pivotal Response Training (PRT) has been successful in increasing engagement for students with AS. PRT is based on applied behavior analysis (ABA) and uses child initiated play based learning to develop communication, language, play, and social behaviors. 'Systematic instruction' is the process of planning lessons to achieve agreed learning goals, including best pedagogical approach; implementation and evaluation of the effectiveness of teaching by collection and analysis of data; and making appropriate changes as required. 'Comprehensible and/or structured environments' refers to learning environments that allow students to know what is being learned and what will be happening, is conducive to learning and to generalising learning while fostering independence. In essence, no surprises. 'specialized curriculum content' refers specifically to the explicit teaching and development of "social reciprocity and communication skills" (Lovannone et. al. (2003). A 'functional approach to problem behaviours' is the use of strategies to replace problem behaviours with replacement behaviours. Functional analysis (where, when & why a behaviour occurs) to determine the reason for the behaviour (often related to communication) and explicit teaching of another strategy that achieves the same outcome as the undesirable behaviour. A collaborative partnership with family is the final component to effective teaching. Children with AS frequently struggle to generalise learning from one setting to another. Implementing learning strategies concurrently in all settings provides the best opportunity for success, and so working alongside families is essential. While there is no one solution that works for every student, a process of cyclical evaluation and modification, trialing and adapting evidence based strategies, provides the best way forward for teaching students with AS.

Like Lovannone et. al. (2003), Schwartz et. al. (2004) describe some of the challenges of the many resources available for students with AS and the importance of using evidence based strategies. They investigated effective programmes for early childhood and identified the same components to successful teaching programmes (Lovannone et.al.) and making mention of intentional planning for transition from early childhood to primary school. Schwartz et. al. (2004) established Project DATA (Developmentally Appropriate Treatment for Autism). 

This additional time was used for individualised intensive intervention focused on "increasing each child’s success in accessing developmentally and age-appropriate activities and environments and improving his or her functioning at home and in community settings" (Schwartz et. al. (2004) as identified in collaborative IEP's. This instruction period was staffed at 1:2 adult to child ratio.

A range of different individualised supports were offered to families. These included opportunities for in-home support, coordination of available community based resources, and networking/support groups. Across service coordination involved annual collaborative inter-professional meetings for those families who were able to resource these privately (most of the participants). Planning for transitions was undertaken by a Resource Coordinator, who also liaised between teachers, family, other professionals to facilitate effective inter-professional practice. The success of the programme was measured by analysis of functional outcomes index and proved successful across all measures.

How families respond to the the plethora of information and advice about diagnosis, treatment and interventions is largely dependent on individual's culture (Mandell & Novak, 2005). Research has tended to use a narrow definition of race, nationality and/or ethnicity when researching factors that affect family choices for their child with AS. Mandell et. al. (2005) reviewed the current body of research and concluded that while there is some evidence that indicate cultural inequities, there is insufficient research into the effects of culture, particularly on early diagnosis, treatment choices and insensitive interactions between families and health professionals.

I have not yet worked with a student with autism in my role of RTLB but my teaching experience is a good platform on which to build. I have had a number of experiences working with students with autism and their whānau over the course of my teaching career, the most recent and the most successful being [name redacted].

I was 'warned' I had a student with autism before walking into the classroom for the first time. I was given a list of behaviours, and presented with strategies that the previous teacher (the fourth in two terms) had provided but was given to understand that thus far, these had proven unsuccessful. [Name redacted]. was obsessed with guinea pigs, constantly made loud noises, yelled "guinea pig" as a response to any question, when over stimulated would yell and scream, and she was prone to hurting other children. I received a set of earmuffs and a teepee. [Name redacted]. was 11 years old.  I entered the class for the first time with trepidation. [Name redacted], clearly not having her needs met and, with high teacher turnover, had not developed a relationship with her teacher/s. With the support of the RTLB, and making really close connections with whānau, we decided to attended a two-day course, 'Tilting the Seesaw' for teams (family and professionals). Tilting the Seesaw is a workshop where teams can work together with the support of experienced personnel, to develop ways to support a child with autism. Teams may include parents, caregivers, other family/whānau, primary school teachers, teacher aids, learning assistants, SENCOs, and RTLBs.

Over the course of the two days working closely with whānau, I found out a lot about [name redacted]. and her ecological systems. In addition to loving guinea pigs (she has 3 at home), [name redacted]. is an avid reader, a talented artist, and has a really good circle of friends. Highly stimulating environments are stressful for her, she is extremely literal, and does not like surprises. Through a combination of strengths-based, practical strategies we worked together to build a plan to support [name redacted]'s everyday inclusion in class:

• Because [name redacted]. loves to read, we set up a quiet zone in the library (and got rid of the teepee which was not age appropriate and set her apart from her peers).

• We set expectations about noise levels in the classroom, for all students (and got rid of the earmuffs, which also set her apart).

• We set up a group seating plan, so that [name redacted]. had the support of at least one of her friends.

• We had a shared visual timetable, so that mum could go through the daily timetable at home before school and [name redacted]. always knew what was coming next.

• We set up home-teacher text message system so that if there were any last minute changes to the routine (eg. cancelled trip or reliever), or anything had happened before school that might affect her wellbeing, we could strategise together so that there was a clear plan in which [name redacted] had a voice.

• I worked very hard to build a relationship with [name redacted] and reinforce that I was not going to be leaving (and determined that I would not leave).

• We developed lessons that built on her strengths and proximal praise to increase confidence and self-esteem.

• We introduced Circle Time, to be able to solve problems collectively, in an inclusive and positive classroom environment.

• We used her artistic talent to create learning story comics to teach replacement behaviours.

Within a relatively short space of time, [name redacted] was talking normally. The word "guinea pig" was only heard in moments of anxiety, which served as a thermometer of her wellbeing. She was happy and settled at school. She was was [name redacted], not the student with autism. The learning stories were paying off and incidents of harming others greatly reduced. The support of the RTLB and Autism NZ in providing the workshop and ongoing follow-up through Outreach Coordinators, and a team approach were crucial in the success [name redacted] experienced at school. This experience taught me first hand that expectations can be lowered when using labels; and that a strengths based, inclusive and collaborative approach, consistent with evidence based and strengths based practices, is the basis of successful practice for all students.

Thomas Armstrong, in his article 'Neurodiversity: The Future of Special Education?' (2017), sees the neurodiversity movement as an opportunity, a catalyst for change in special education. Unfortunately, neurodiverse appropriate terminology has not caught up, even in the context of this article, specifically about the acceptance of neurodiversity as a spectrum of normalcy. A neurodiversity approach to education differs to the current special education approach primarily in establishing a process of "positive niche construction" (Armstrong, 2012). This is essentially good teaching practice: establishing a learning environment conducive to quality learning experiences for a diversity of students. Armstrong argues that where special education falls down is the failure to identify student strengths - identifying disabilities rather than abilities.

Armstrong lists a range of formal and informal assessment tools (VIA Character Strengths and Virtues, Dunn and Dunn Learning Style Assessments, Search Institute's 40 Developmental Assets, Gallup's Strengths Finder, Torrance Test of Creative Thinking, Multiple Intelligences Diagnostic Assessment Scales, Baron-Welsh Art Scale, Neurodiversity Strengths Checklist (Armstrong, 2012), "strengths chats," (Epstein, 2008), motivational interviewing (Sheldon, 2010)) which can help educators develop programmes of learning that make the most of strengths and minimise weaknesses. Finding alternative effective pedagogical approaches (eg. project based learning), providing flexible opportunities to demonstrate learning, and maintaining high expectations is key to success. I agree with Armstrong's viewpoint. While continuing to provide structured learning opportunities in literacy, for example, there is a need to provide the right digital tools that remove barriers and build self-esteem so that all students see themselves as successful learners. So many of our students, not just neurodiverse students, become unnecessarily disengaged from education. Unfortunately there are not enough resources and expertise available to give students the tools as well as teach them to use them confidently. This lack of adequate resourcing is an ongoing frustration. Only when students have the right tools and the flexibility to learn and demonstrate their knowledge and understanding in a range of different ways, will we have an inclusive education system. Unfortunately this is a double edged sword. In order to get funding to achieve this, we have to use a deficit thinking model. Armstrong also recommends educating our students about brain function, plasticity and growth mindsets. Jo Boaler has been inspirational to me, specifically in growing young mathematicians. Armstrong uses the analogy of "brain forests" coined from Gerald Edelman's brain ecosystem model (1994) to explain the rich diversity between brains and ecosystems.

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