A Spectrum Of Possibilities

In honour of Autism Awareness Month, Leaderonomics speaks to Charlene Marie, Programme Consultant at Autism Consultancy, about the insights and lessons she’s learnt from over eight years of being an Applied Behavioural Analysis (ABA) Therapist as well as her time as a consultant at child specialist clinics and lecturer. Marie shares with Louisa Devadason about the state of support and inclusion in Malaysia for those coping with development delays.

“Every child is a different kind of flower, and all together, makes this world a beautiful garden.” —Anonymous.

Tell me about the importance of children with development delays being accepted into mainstream education and workplaces.

In my experience, when we take our kids to a public place like the supermarket to learn community skills, many people express their unhappiness—going as far as calling the children crazy—because of behaviours and ticks inherent to autism spectrum disorder (ASD).

When these children are allowed to be excluded, ignorance prevails and we, as a harmonious society, do not grow. It hinders our empathy towards others.

The more integrated these kids are into society, the more we can learn to readjust and adapt to a whole spectrum of people as well as understand the different ways they learn and communicate.

A social skills class held at the Autism Consultancy centre.

You may think that due to special education or whatever needs you have, you are separate and not part of society. That’s the problem. When you are not welcomed as part of society, no one will learn what any of this is and they will never learn to manage these diversities as you would manage your talkative friend versus your very quiet friend.

Everything about your life becomes separate from most of society. Inclusion doesn’t really exist. We’re trying to include but without knowledge and understanding it is difficult to achieve.

What are some of the struggles faced by those with development delays transitioning to mainstream schools and workplaces?

Most mainstream classes are too large to target specific behaviours of individual children or their specific needs. I am currently working with an organisation who has been planning something truly amazing to put into place. It runs mainstream education classes but also has created intermediary classes that sit between special education and mainstream education that addresses individual needs.

The skill to support these delays is also a fixable but current challenge. Many educators we have worked with are unaware of what ASD is. They have never even heard of it. Some schools are honest and say straight up, “I’m sorry we don’t have the resources to support your child’s needs.” I respect that but it is frustrating to see so many doors close for these children. It is easier to say “no” because the idea of change and aides and whatnot coming into one’s institution sounds intrusive and inconvenient. However, it is a solvable issue with training, education and awareness as well as understanding the role of shadow aides and intervention.

Support is another struggle. Many advanced countries are aeons ahead of us and have streamlined student support for not only children with development delays but even students facing hardship or inflicted by mental illnesses like depression. Schools provide or have access to speech therapists, school psychologists and counsellors so both parents and students can seek help and guidance from the school. Most teachers in these countries are trained to manage diversity and be quite flexible when it comes to their teaching style.

Charlene Marie, Programme Consultant at Autism Consultancy

Not only that, the job scope for those who successfully complete any programme or education is limited. We still delegate menial, repetitive and mechanical tasks to people with development delays. We don’t realise these people can be writers and thinkers and do so much more. Furthermore, most intervention ends in the late teens, so most of them reach adulthood and have no support or guidance to go anywhere from here. So really, it’s quite isolating for most of them when they become adults. They don’t get to have dreams of being teachers and engineers.

I’ve personally met a wonderful teacher with Attention Deficit Hyperactivity Disorder and a writer with Asperger’s, so I know it’s absolutely possible.

What are some of the current policies and intervention available in Malaysia?

The Ministry of Education in Malaysia has implemented the Program Pendidikan Khas Integrasi in our government school system. It’s basically a special needs class within mainstream schools. Children with development delays are sort of included but not fully as they do not participate in any mainstream classes.

Sadly, one of the oversights of this programme is that the children are clumped together without assessing their needs and stages of development. Also, children with ASD do not have the same needs as children with dyslexia, and children with ASD and/or dyslexia do not have the same needs as those with cerebral palsy or Down syndrome, but they are all pooled together. This system is a good effort, but education has to be further individualised and diversified because teaching a child with speech delays is very different from one without speech delays. It is a restructuring necessary from top to bottom as some of these policies even affect typically developed students.

I think that’s why private education entities, like ours, and many other centres are becoming increasingly popular because these centres customise each programme to suit each child’s needs. However, our ultimate goal as therapists is to mainstream when we can and support our kids in becoming independent and functional in diverse settings.

In Malaysia, it can feel like a rollercoaster ride because you have to figure out where the psychologist is, find an early intervention centre and beg schools to take your child in. Then they have to decide if their child needs occupational therapy or speech therapy or whatever else. Also, because we are yet to become streamlined, my reports or notes differ from other therapists or the school, and this creates more confusion for the families and institutions we try to work with when creating a programme.

How can we, as ordinary people, make things better?

Be open, be empathetic and allow judgements to take a back seat. Learn to ask more questions. It would be great if these things were taught in physical education or even as a part of moral studies, just to create awareness.

Diversity management is at the epicentre of successful institutions and organisations now. Starting young is the most effective way to learn. Parents can impart values like openness and empathy to their kids. Learning from an early age to accept that “some of my friends can talk and some cannot” or “my friend is great at colouring but I am not” will definitely be a good start to making things better.

April is Autism Awareness Month. Let’s do our part in creating awareness and improving understanding of autism. If you have any stories or comments you would like to share, drop us an e-mail at editor@leaderonomics.com. For more Pay It Forward articles, click here.