Although many have heard of the term Autism Spectrum Disorder (ASD), people still struggle to understand the extent to which autism affects the lives of these individuals and their relatives, Laura Frendo notes.
April is dedicated to autism awareness, so let us take this as an opportunity to understand how best one can support individuals with ASD and their care-givers. This article will highlight the support systems that help individuals with ASD to benefit and learn at their full potential both at the Inspire Foundation and beyond.
According to the latest definition provided by the Diagnostical Statistical Manual, fifth edition (DSM-V), ASD is characterised by persistent deficits in social communication and social interaction across multiple contexts, including deficits in social reciprocity, nonverbal communicative behaviours used for social interaction, and skills in developing, maintaining and understand relationships. In addition, such diagnosis requires the presence of restricted, repetitive patterns of behaviour, interests or activities.
Children with ASD encounter different types of adult support through their learning and participation in mainstream schools and beyond. Children start receiving support from their parents and guardians. This type of support is often taken for granted but is a crucial part of the child’s development. As children grow, they start receiving support from their therapists, specialised programmes and, later, from school.
In Malta, there are two main types of support in mainstream schools, provided by learning support educators (LSE – ‘one-to-one’) or ‘shared’ support. One-to-one support denotes that the LSE will only support one child with additional needs in the same classroom. Alternatively, shared assistance implies that the LSE may have more than one child to support and they may not be in the same class. Thus, children assigned shared LSEs must spend time on their own and are expected to complete certain tasks independently.
According to the Guidelines for Educating Students with Autism Spectrum Disorder, published in 2010, a typical day at school consists of frequent transitions from one activity to another. At times, change in activities also requires the need to change location. If these changes are not communicated effectively to these children, such transitions can be very stressful to children with ASD. Support is essential to ensure that appropriate instruction and attention are provided to help the child function well in a classroom environment. This may be one of the reasons why many children on the autism spectrum in Malta are supported with a one-to-one LSE.
Some argue that having one-to-one support may put children at risk of becoming prompt-dependant. The truth is that independence can also be promoted by using prompts effectively. This can be avoided by using prompt-fading procedures. Although it is necessary to reward prompted responses in the early stages of teaching, rewarding unprompted responses results in effective rapid learning, thus avoiding prompt dependence. Prompts are important for children with ASD to learn new skills, however, these skills can only be mastered if tasks are completed when prompts are removed.
All humans, irrespective of their abilities, desire to function independently. Although this desire for independence is present in children with ASD, there are different degrees to which autism affects individuals but all individuals with ASD can reach their own level of independence given the right support system. Although research shows support to children with ASD is essential in mainstream schools, it is also important to focus on how support does not impede effective participation in the classroom and school. Working on promoting independence in children with ASD is fundamental for their future employment and inclusion in the community.
An individual work system is a type of focused intervention that effectively increases independence among all children irrespective of their abilities. The Treatment and Education of Autistic and Related Communication-handicapped Children (TEACCH) developed structured teaching through individual work systems that are supported by visual cues to help the individual function independently, thus reducing the frequent need for adult support.
All humans, irrespective of their abilities, have the desire to function independently
Structured teaching has four main components including physical structure, visual schedules, work systems and task organisation. This work system allows the child to understand the task at hand, when that task is finished, and to know what work needs to be completed afterwards.
The Inspire Foundation has a specialised programme, known as the STEP Intensive Early Intervention Programme. It provides specialised intervention to children with ASD from diagnosis until the age of five. STEP uses the TEACCH approach to provide support on a one-to-one basis. The four main components from the TEACCH approach are the physical environment, visual schedules, visual cards and task organisation.
Great attention must be given to the physical structure of the premises to reduce distractions.
Visual schedules are essential in providing the child with information as to where, when and what the activity will be. A visual board can be used to provide the child with such information.
Since the visual modality is the strongest means for children with autism to understand, visual cards are used to support any verbal cues presented to them by the supporting adult. Knowing what is expected helps reduce their levels of anxiety.
Attention must also be given to the way material is presented to children with ASD. The ‘left-to-right’ technique is used. Children are given work that needs to be completed on the left and then placed in a ‘finished’ location on the right once the task is done.
In conjunction with the TEACCH approach, at STEP we also make use of the SPELL framework. SPELL refers to: Structure, Positive approach, Empathy, Links and Low Arousal.
The STEP programme is highly structured and is built on the need for a sense of order and preference for visual organisation, commonly associated with the autism spectrum. Structure is presented in terms of the physical environment and the highly-organised presentation of tasks to each child. The importance of structure has long been recognised and is evidence based as it makes the world that may appear to be confusing to the child with autism a more predictable, accessible and safer place.
Each child attending the STEP programme is assessed. This helps us set personalised and realistic goals for each child. Positive behaviour support plans are used to address behaviours that may be challenging or that may put the child or others at risk. Motivators and reward strategies are used to encourage appropriate behaviour and the learning of new skills.
The best starting point when working with children on the autism spectrum is to see the world from their perspective. We must begin from their point of view to gather insights into how they see and experience their world, knowing what motivates or interests them but importantly what may also frighten, preoccupy or otherwise distress them.
As part of the specialised intervention the children receive in the STEP programme, links are maintained with the schools as well as with the parents/guardian. Links with schools are maintained twofold: by inviting the LSEs to observe their assigned child while in the STEP programme and by having the tutor attend for the school individualised educational plan as well as for classroom observations. Links with parents/guardians are maintained by providing them with feedback following each session.
Support is offered to parents/guardians of children in the STEP programme through parent support groups.
The environment within the STEP programme has been carefully designed to ensure that a low-arousal environment is present in all the different areas used by the children. Special attention was given to the potential sensory overload that may be affected by the type of flooring, wall colours, curtains, light fittings and furniture used within the whole premises. The tutors also provide a low-arousal approach to ensure that each child learns in an environment that enhances each and every learning opportunity.
Although intervention at STEP is provided on a one-to-one basis through the TEACCH approach and the SPELL framework, the children are empowered to become more independent and to decrease their dependence on adult-led prompts to the use of visual support systems. Provided that the right support system is in place, all children with ASD are likely to increase their on-task behaviour and the ability to generalise skills across different settings rather than developing rigid behaviour patterns.
Everyone, irrespective of their needs, requires a system of support to thrive in today’s world. Moving forward, we can all start making a difference in society by changing our perception and increasing our acceptance towards individuals with autism and their relatives. Let us all unite as a society to stop judging and start supporting each other!
Laura Frendo is Inspire’s Early Intervention team leader.