Imagine you visit an everyday place – the supermarket, for example – and very suddenly you see something that upsets you. What you see is nothing sinister; it’s something simple like a sight, a smell, a touch, or a sound, but still something that you are very sensitive to. Why you are sensitive to this, you couldn’t say. But once you see this, you are unable to keep calm. You are unable to explain what or how you’re feeling.
You start to react. You make a noise. Your mother is with you and tries to calm you down, but she can’t. You become louder. You become overwhelmed. You’re upset and you just don’t know how to understand and cope with what you’re feeling. You can’t calm down. You can’t explain. All you can do is react.
This is an indication of what someone on the autism spectrum may go through when they are outside of their comfort zone. Autism spectrum disorder (ASD) is a developmental disability characterised by deficits in social communication as well as a myriad of other areas.
The incident between the Police and a 14-year-old boy with autism on 25 May has sparked national scrutiny, with the police personnel in question currently being under investigation.
The incident has also brought to attention the lack of awareness of ASD among the general public and figures in authority – a sentiment shared by University of Kelaniya Department of Disability Studies speech therapist and senior lecturer Dr. Nimisha Muttiah.
What is ASD?
Autism is a highly variable neurodevelopmental disorder. Neurodevelopmental disorders are disorders that affect the development of the nervous system and how the brain responds to situations, which may affect one’s emotions, learning ability, self-control, memory, and social communication skills. Social communication skills and their associated skills are something we as humans take for granted – things like talking to other people and understanding what they are saying, making eye contact, and picking up clues on how other people are feeling.
The highly variable nature of ASD means that not everyone on the autism spectrum will display challenges in all of these areas. Some people may have significant difficulty in these areas, while for others, the level of difficulty is less pronounced.
An important thing to keep in mind is that although most people with autism will display some of the features discussed above, no two people with autism are the same. This is why it is referred to as the autism spectrum.
While many of those with ASD are unable to live independently and will always need support, there are people with ASD who can function independently and live normal or near-normal lives. Some of our brightest minds like Bill Gates and Nikola Tesla are on the autism spectrum. Satoshi Tajiri, the creator of Nintendo’s Pokemon, is also on the autism spectrum.
It is important to note that there is no known cure for ASD. Rather, children on the spectrum are provided with therapy and support to enable them to live comfortable and fulfilling lives. Therapies are individualised to suit the specific needs of the child and often include speech therapy, occupational therapy, and functional academics. Treatment for ASD is mostly behavioural therapy focused and highly individualised, based on the specific needs of the patient.
The Sunday Morning Brunch reached out to special education teacher Jumana Mohamedally to learn about the most common behaviours of children with ASD and how to recognise and respond to these behaviours.
Mohamedally shared that in addition to challenges with social communication, many children (and adults) with ASD may display behaviours such as:
- Heightened awareness of information we process through the senses, such as increased sensitivity to sound, smell, or touch. This, in turn, affects one’s ability, for example, to function effectively in a crowded space where noise levels, smells, and sights are amplified
- Repetitive behaviours such as hand flapping, humming, or repeating a line they heard in a movie
- Restricted interests such as a passion for dinosaurs, ceiling fans, trains, or a specific movie
- Difficulties with executive functioning, which involve skills such as planning, organising, and problem-solving
- Difficulty regulating emotions and behaviour. For example, happiness at seeing an ice cream cone may be expressed through laughing, jumping up and down, and rolling on the floor with glee
- A need for sameness and routine
- Heightened anxiety
While these behaviours are not definitive signs, noticing one or more of these behaviours is a good cause to pay a little more attention and care to the person you’re dealing with as it is likely that they may have ASD.
Managing autism as educators
Many teachers do not receive focused training on recognising children with autism and other learning disabilities. A lot of these teachers will come across children with ASD in their classes, as a large portion of children with autism, particularly those who function at a higher level on the spectrum, are never diagnosed and are easily dismissed as difficult children.
The key to working with children with autism is to be open, understanding, and to get to know your students, Mohemadally explained. Observe your student, learn about his/her interests, and work out how best to communicate and connect with a student.
Consulting with your students’ parents and bringing in professional teams to optimise the process is a very important step. Speech therapists, occupational therapists, special education teachers, and general education teachers are all professionals to involve when dealing with autistic students.
Minimise verbal instructions and use tools such as pictures and videos to teach and communicate. Use schedules to create stability and give time for students to comprehend and respond.
Building awareness and overcoming stigma
The Sunday Morning Brunch reached out to Reach Beyond, a not-for-profit organisation that focuses on building autism awareness, holistic intervention, and support services for people with ASD.
Reach Beyond was founded by four mothers of children with ASD, who found it difficult finding support and guidance for their children. Coming together, they launched Reach Beyond to give parents as well as those with ASD somewhere to turn and people to lean on. Reach Beyond also moves to initiate changes on awareness at the grassroots and policymaker levels and influence social and national policies to improve education, employment, safety, and inclusion of individuals with disabilities.
Speaking with Co-Founders Tharsiny Markandu and Nelun Guruge along with Directors Rajeeka Jenorge and Dilrini Dolapihilla, we learned that many parents find it difficult to accept their children’s diagnosis, particularly when their child looks healthy physically. It is very important to understand the struggle of parents of children with autism, particularly in the face of stigma and the incorrect assumption that ASD is a disease.
Parents are key to helping a child with ASD achieve their full potential; parents need to be pillars for the child, finding the right teachers and creating the best environment possible for their child to grow. It is very difficult for parents to do this when they have to deal with the stigma and fear of being judged by their peers or even their own families because something is “wrong” with their child.
The most powerful way around stigma is through awareness. Guruge explained that very often, once people learn what ASD is and what it means, they automatically lean towards being more helpful and supportive. The fact that ASD affects approximately one in 54 children in the US alone (as reported by the Centers for Disease Control and Prevention) means that there is much to do in terms of building awareness.
It is a common misconception that information on special needs and disabilities is only relevant for teachers, Jenorge explained. Meaningful provisions for individuals with special needs ought to be made an important agenda on a much broader level; from general industries to lawmaking, legal enforcement, and law enforcement protocol, there needs to be more awareness on how to deal with special needs and disabilities, as well how to include those with special needs in general society.
Reach Beyond aims to create awareness through support groups, workshops, and their intervention centre that provides effective, co-ordinated, and holistic treatment and therapy services. Reach Beyond also drives the Change for Autism movement, conducting workshops for teachers, parents, and professionals across Sri Lanka on inclusive education for special needs children as well as practical strategies for parents and children.
Furthermore, Reach Beyond also supports parents through their Parents as Partners support group, which is linked to a similar support group in the UK, and lets parents of those with ASD know that they are not alone and that they can seek help and support with how to manage their children.
Compassion is key
The team at Reach Beyond explained that the most important thing the public can do when dealing with people with ASD and other special needs conditions is to be kind. Small acts of compassion and understanding make a big difference.