Understanding Autism Spectrum Disorder (ASD)
Autism Spectrum Disorder (ASD) is a complex developmental disability that usually appears during the first three years of a person’s life. A neurological disorder, it affects the way the brain functions, especially in a person’s communication and social interaction skills.
The exact cause of ASD has not yet been pinpointed. Genetic factors appear important – for example, identical twins are far more likely than fraternal twins or siblings to both have autism. There is much debate about environmental causes. Suspected but unproven causes include diet and mercury poisoning. The link with vaccination has been extensively researched and no evidence for a causal connection has been identified.
Recent research suggests that folic acid taken in the first eight weeks of pregnancy reduces the incidence of ASD. Some of the most promising recent findings on causes of ASD have been by scientists at Auckland University's Centre for Brain Research, who suggest that ASD may be caused by mutated proteins in the brain that weaken communication between brain cells.
Autism Spectrum Disorder (ASD): A Resource for Educators defines ASD as the name for a group of conditions where a student has a noticeable delay or difficulty in three important areas of development – communication, social interaction, and cognition (thinking). In addition, many students with ASD, particularly younger children, either under- or over-react to sensory information.
The New Zealand Autism Spectrum Disorder Guideline recognises that ASD affects people in diverse ways:
ASD is a very heterogeneous condition affecting a very diverse group of individuals with a wide range of impairment and disability. This requires an equally wide range of support and intervention.Page 30
ASD may be associated with an intellectual disability and/or learning disability. However, a growing number of experts reject the idea that it is a form of intellectual disability in itself:
Rather, it is becoming better understood as a complex brain condition that reflects structural and functional differences in the movement, anxiety, communication, and sensory (MACS) systems of the brain as well as the interconnectivity between those systems and, in some situations, other parts of the brain.Inclusion Notebook, Fall 2009, page 2
A revised version of the clinical definition of ASD will be introduced in May 2013. The range of autism spectrum disorders will be categorised together, and diagnosis will depend on the severity of the symptoms, features, and behaviours associated with autism.
What is Asperger Syndrome?
People with Asperger Syndrome usually have average or above average intelligence and develop typical or advanced language skills and vocabulary. They can generally cope with curriculum content that is concrete and fact-based, and may have an exceptional interest in one topic.
Like other people with ASD, people with Asperger Syndrome may have clumsy or uncoordinated movements and repetitive rituals. They struggle to understand the nuances in non-verbal communication (for example, facial expressions), which adds to their difficulties with social interaction. They tend to be rigid in their thinking and behaviour.
Their language and cognitive abilities often mean that people at this ‘end of the spectrum’ are not diagnosed until their lack of social and communication skills and difficulties with abstract thinking become more apparent – often at secondary school.
From May 2013, Asperger Syndrome will no longer be used as a separate diagnostic term. Instead it will be categorised as part of the autism spectrum.
Who does ASD affect?
ASD occurs across all ethnic groups and social classes. A 2012 study by Dworzynski, Ronald, Bolton, and Happé estimates that nearly 50,000 New Zealanders (1 in 88) have ASD.
Boys seem to be affected four times more frequently than girls. However, the study challenges this, showing that there is a gender bias in diagnosis.
Some are concerned that a rise in those diagnosed with ASD indicates increased incidence. However, it seems more likely that greater knowledge is leading to earlier and more frequent diagnosis.
New Zealander Jen Birch was not diagnosed with ASD until she was 43 years old:
I was born into a rural South Auckland family 52 years ago. I took my first steps at 22 months of age and many sounds terrified me. I refused to touch sticky substances such as buttered toast. I had many other developmental delays and differences but also some above average skills such as reading and writing. Many of these differences were long-lasting and the challenges of adulthood made some of them more noticeable. My collective characteristics were not recognised as a case of Asperger Syndrome (a form of Autism Spectrum Disorder – ASD) until my accidental encounter with an autism specialist when I was forty-three.New Zealand Autism Spectrum Disorder Guideline, page 11
How is ASD identified?
Early identification of ASD ensures that young people and their families get the targeted support they need to achieve the best possible outcomes. A late diagnosis means that students’ social and behavioural issues may be misunderstood and they can miss out on important support.
Teachers and school leaders have an important role to play – noticing the features that may indicate ASD, discussing these with parents and whānau, and participating in diagnosis.
Diagnosis is a multi-disciplinary effort that must involve experienced health care professionals who are able to make a formal diagnostic assessment. Diagnosis has, until recently, used the DSM-IV-TR and ICD-10 registers (Appendix 4 of the New Zealand Autism Spectrum Disorder Guideline), but the DSM-IV-TR will be replaced in 2013 by the DSM-5 register.
Diagnostic tools provide a framework for observing behaviour for the purpose of informing possible interventions. They are designed to gather an in-depth understanding of a person’s individual strengths, needs, and interests. However, some professionals have raised questions about the quality and implementation of current diagnostic tools. Labelling a person as having ASD tends to focus on the limitations for that person rather than on their potential.
For families and students, diagnosis is likely to be a shock, but it can also provide a sense of relief as they realise that a limited ability to ‘fit in’ is not the ‘fault’ of the child or young person.
More information about the principles of identification, diagnosis, and initial assessment can be found in the New Zealand Autism Spectrum Disorder Guideline. A related website, NZ ASD Guideline, includes a summary, video tutorial, and further support material.
How is the diagnosis of ASD changing?
The diagnostic criteria for ASD will change from May 2013. A range of autism spectrum disorder diagnoses – autistic disorder, Asperger Syndrome, childhood disintegrative disorder, pervasive developmental disorder not otherwise specified (PDD-NOS) – will be collapsed under the single diagnostic category of Autism Spectrum Disorder.
Diagnosis will then consider the severity of the symptoms, features, and behaviours associated with autism. Social and communication characteristics will be collapsed into one domain, and more attention will be paid to sensory sensitivities.
The changes reflect recent research into ASD. The American Psychiatric Association website has more detail about the changes in the diagnostic criteria.
What are the implications of ASD for teaching and learning?
Schools can influence the experiences of students with ASD by removing barriers to participation and achievement. An in-depth understanding of how ASD affects individuals helps school communities to respond to their students’ strengths and needs. However, it is important to remember that students with ASD are a diverse group of people.
It is critical to remember that students with autism vary widely in experiences, skills, abilities, interests, characteristics, gifts, talents, and needs. If you know one person with autism, you know ONE person with autism.Kluth, 2010, page 2
ASD has four core characteristics: communication, social interaction, cognition, and sensory issues. Each characteristic impacts on a student’s experience of school and requires a different response from the school community:
- collaborating with students’ care communities to provide a pool of knowledge about what may work
- ensuring that interventions are coherent in all contexts.
For a more detailed discussion of the core characteristics and suggested teaching strategies, see the section Implications of ASD for student learning and development.
What are the valued outcomes for students with ASD?
Academic outcomes are important, but most families, whānau, and special education practitioners in New Zealand agree that an emphasis on presence, participation, and overall development is also needed.
The New Zealand Curriculum encourages the development of holistic outcomes that foster all the competencies needed to become ‘confident, connected, actively involved, and lifelong learners’.
The valued outcomes for a student with ASD are likely to include a combination of social, emotional, physical, creative, and intellectual goals. The outcomes will take into consideration how student learning and development is impacted by ASD.
Autism Spectrum Disorder: A Resource for Educators provides ideas and information about possible outcomes to promote the development of key competencies while taking into account the impact of ASD.
It may be helpful to draw on existing models of a holistic approach to education and health – for example:
- Te Whāriki
- Te Whare Tapa Wha (Durie, 1994)
- Te Pikinga ki Runga: Raising Possibilities (Macfarlane, 2009).
Negotiate student outcomes with the team of people who share responsibility for their education. Pay particular attention to what the student and their family and whānau believe to be valuable outcomes.
The staff at the most inclusive schools demonstrated a commitment to educate students with high needs. This commitment went beyond offering a welcoming environment to students, and extended to ensure that the school made adaptations to cater for students and their families.Education Review Office, 2010, page 11
Review outcomes regularly to check whether current strategies are working or need to be changed, and whether it is time to set new goals.
- How does the description of ASD in this section resonate with your experiences with people with ASD?
- Keeping a range of valued outcomes for students (for example, social, personal, cognitive) in mind, consider: How does ASD impact on each student? On their whānau? On other people in the school and wider community? What benefits does ASD have for each student and their care community?
- Do we need to have a different theory of learning for students with ASD than for other students? Should the major learning goals be different? If you answered yes to either of these questions, what should be different, and why?
- What features of your school context could affect the educational experiences of students with ASD?