Saluting Unsung Heroes

One of the most useful resources to me are the people who work with neurodiverse individuals everyday. They do this, because they choose to. This piece will highlight practitioners, what they do and their thoughts on stigmas around autism that need to be broken. This is the first of a 2-part series which will wrap up our series of articles themed “Breaking the Stigmas”, in April for Autism Awareness & Acceptance Month.

By Desiree Kaur

Photo source: Unsplash

I am a mother. This is my first and foremost role. So, my journey of understanding neurodiversity is inspired by my son and everyday, I continue to learn new things. The learning process, often times are linked to reading books, attending courses or searching online. One of the most useful resources to me are the people who work with neurodiverse individuals everyday. They do this, because they choose to. As a mother, I can’t thank them enough for the value they bring to me and the lives of our neurodiverse loved ones. This piece will highlight practitioners, what they do and their thoughts on stigmas around autism that need to be broken. Together, let us say thank you to them and all practitioners in the field of special needs. This is the first of a 2-part series which will wrap up our series of articles themed “Breaking the Stigmas”, in April for Autism Awareness & Acceptance Month.

Assoc. Prof. Dr. Subashini Jayanath, Associate Professor & Consultant Developmental Paediatrician

Assoc. Prof. Dr Subashini Jayanath’s is an Associate Professor and Consultant Developmental Paediatrician. She’s been a Paediatrician for 11-years, and further specialised in Developmental Paediatrics for 10 of those years. Her area of expertise includes assessment, diagnosis and management of children with developmental conditions, such as autism spectrum disorder, attention-deficit hyperactivity disorder (ADHD), learning disorders and developmental delay. Part of her duties include academics. She teachers and supervises undergraduate and postgraduate students at the Department of Paediatrics. She also supervises and trains developmental paediatrics fellows . Research is another aspect of her work that is constantly ongoing. To learn more about Dr Subashini, view her UM Expert Profile here. She is also the Co-Chair & Global Outreach Officer for the International Society for Autism Research (INCAR). Her published research is also available here.

Why did you choose this line of work?

“I think that is a very good question, but a difficult one to which to give a short answer! It was not any one particular thing that made me want to pursue developmental paediatrics. There were many little things, but it just ‘felt right’ for me. I love working with children, and this field, more than many others includes the opportunity to forge long term therapeutic relationships with children and their families. It provides the privilege and opportunity to help in a small way each time a child and his/her family come for appointments. This is mostly in the form of listening to families and providing an objective and different perspective and practical suggestions based on a child’s developmental age and unique strengths and difficulties.”

What are some of the challenges you face?

“For a long time, whenever developmental paediatrics was mentioned, I’d get a “What is that?” response, even from within the medical fraternity. But having said that, during the past few years, this has changed for the better, far quicker than I would have ever anticipated. Awareness of this area of paediatrics, and the services that children with different needs require, has improved and I am sure that it will continue to do so. However, there is still a long way to go.

It is continually frustrating that there is insufficient funding for allied health services such as speech-language therapy, occupational therapy and clinical psychology. Accessibility to services is limited for children below a certain income bracket and this inequity is very difficult for families.

Ever growing waitlists for developmental diagnostic assessments are also very trying for families and medical professionals alike. Assessments for children with developmental conditions typically take approximately 90-120 minutes for new patients and 45 minutes for follow up patients. If you consider this along with the insufficient number of developmental paediatricians in the country, you can imagine that it is a losing battle to try and shorten waitlists. Believe me, I have tried, but the more clinic sessions we open, the more referrals come in! What is really needed is training an upskilling of general paediatricians and primary healthcare providers so that initial assessments and referrals for services are done, while the children await formal and detailed assessments by developmental paediatric teams.

The other main challenge is the lack of individualised education plans (IEPs) and support services for fully inclusive education. There are schools that are very supportive and are willing to make changes for the benefit of children with different education needs. But, a country-wide system needs to be put in place for this to be done in a more coordinated, systematic  and consistent way.

Also, the absence of English-medium special education services within the public education system is a great obstacle for many children with different educational needs. A significant number struggle with language and having to navigate multiple languages once they start primary school is a big hurdle. Often, therapy is in English and the children who are used to English have difficulty coping with an education system that uses other languages (be it Malay, Mandarin or Tamil, etc.) as the medium of instruction. The ones who have the means have the option of private education, but the large majority do not have this option. We need to have a system that enables all children to be supported in inclusive learning environments that meet their individual needs.”

What is your favourite part of your job?

“There are many things I love about my job. And I look forward to the clinics, so it does not really feel like ‘work’ for me. My favourite part is when one of the children I have seen is happy to come back to the clinic and remembers those of us working there. Many of the children, even the ones who have challenges communicating verbally often have an uncanny memory of being at the clinic. And it’s very touching when they want to come back and be seen and are eager to be assessed.

It’s a really priceless feeling because to me that means that they are getting some benefit from the experience as well. We often set external benchmarks for a child’s progress, but if any of the children themselves are calmer or happier for the interaction with the team, I think that it more important than anything else.

Another aspect that I find immensely rewarding is the opportunity to reframe things in a positive or at least a less negative light for families. Being able to draw attention to the strengths and positive traits of each child and highlighting this to parents and carers and then seeing the subtle shift in perspective, is one of the best parts of the job!”

Tell us some of the stigmas and stereotypes around autism you wish to break & why.

“There are many stereotypes around autism and many other developmental conditions, that need to be debunked. I will only mention a few which seem to keep resurfacing.

Firstly, is the myth that we must ‘cure’ autism. Autism spectrum disorder (ASD) is a neurodevelopmental condition. It is not a disease to be cured. It is important that everyone is on the same page here as goals for therapy and support need to be framed around clear end targets. We should not try to change a child to be what he/she is not. However, therapy, including behavioural therapy can help equip children with autism to better navigate their social environments and reduce anxiety and stress.

Also, I have heard from parents that there is the belief that if a child with autism does not talk by age six, he or she will never talk. This can be a damaging belief. Everyone’s journey is unique to them and different and we really should not make assumptions about their progress. There are children with autism who learn to speak later, there are ones who communicate well in other ways and there are also children who may not acquire communicative verbal language but may comprehend language or respond in other ways. Often, children use a combination of these and that comes back again to the individuality of everyone’s condition.

Social stigma as a consequence to having a child with autism is very damaging. It can cause families to be in denial for longer time and very frequently, they suffer from a sense of shame and guilt because they are blamed by family and society. This is not right and as a society we need to be well-informed and educated about this so that parents and carers do not suffer from the burden of other people’s misinformation.” 

Prakash Ravindran, Clinical Psychologist at Oasis Place.

33-year old Prakash Ravindran has been a Clinical Psychologist for 8-years. He works mostly with the neurodiverse population, ranging from children to young adults. His job involves providing consultations, assessments, diagnoses, therapy sessions and conducting workshops/trainings. A big part of his work comes in the form of assessing, reporting, diagnosing and recommending interventions for individuals of all ages with developmental conditions such as Autism Spectrum Disorders, ADHD and other learning disabilities

Prakash says, “When a client first comes to see me, I start of with a consultation session to find out what their main concerns and their history. The consultation session also gives me an opportunity to provide recommendations and suggestions to parents/clients. From there, we decide on the next course of action whether that looks like a formal assessment or therapeutic sessions. I support clients in various areas such as behaviour, social competencies, emotional regulation, transitions and mental health. This can be in the form of one-on-one sessions or in small groups. At Oasis Place, I also lead Social Thinking and Malaysia Day Camps, promoting socialization and inclusion for all! Besides my work with clients, I often conduct workshops and training sessions on topics related to neurodiversity and mental health for parents, teachers, corporates as well as the general public.”

Why did you choose this line of work?

“After completing my bachelor degree in psychology, I felt that my calling was to work with people and help them with their difficulties. Hence, I pursued my Masters of Clinical Psychology. I worked as an enrichment teacher for a while before I pursued my Masters, and really enjoyed working with the children there. While I was completing my Masters, I had the opportunity to do my internship at an early intervention centre that exposed me to the neurodiverse population. I haven’t looked back since!

To be honest, I was first exposed to young adults with learning disabilities when I was a teenager as my father used to volunteer with them at church. The rest of my family would join in for special event celebrations. I did not imagine that things would come full circle!”

What are some of the challenges you face?

“I think a big challenge is the lack of awareness and understanding of neurodiversity. There are still many misconceptions and misunderstanding of what it is, which makes acceptance harder. This is why the push to educate the public about Autism as well as the various neurodevelopmental conditions are so important.”

What is your favourite part of your job ?

“The people. Getting to meet and work with people of different backgrounds and abilities is awesome. I get to learn more and see the world from various perspectives. Also, seeing the people I work with thrive and live a purposeful life is very fulfilling for me.”

Tell us some of the stigmas and stereotypes around autism you wish to break & why.

“A big common stereotype is that autistic individuals can’t have and don’t want social relationships. I wish to break this stigma because I have personally seen the positive impact that socialization and inclusion has had on autistic individuals. When given the opportunity and right supports, they can foster friendships and connections with others. Not to mention, I have enjoyed getting to know and establishing friendships with them too!”

Sofia Vijayakumar, Child Psychologist at Headstart Academy

Sofia Vijayakumar, 31, is a Consultant Child Psychologist at Headstart Academy. She’s worked in the field of special needs for over 9-years. She was a special needs educator for 2 and half years and completed her master in the UK, after which she became a child psychologist. Her role as a Child Psychologists involves consultations with parents and their child, which includes behaviour observation and listening to concerns of parents, while allowing her to find out more about their child. These consultations help in understanding them better, especially when it comes to family dynamics and their hopes for their child.

Besides the initial consultation, she also carries out a range of developmental assessments, behavioural assessments and assessments for learning disabilities. This includes concerns regarding Autism, ADHD, Dyslexia, and many others. These assessments assist in understanding the areas of concern a child may have, or even strengths, allowing the planning of required support that is dedicated specifically to the child for an effective outcome.

Why did you choose this line of work?

“From a young age, I was always told that I was a good listener, and listening to my peers share their thoughts and concerns was something I genuinely enjoyed. It was then, that I knew I would go into the field of Psychology. Counselling psychology was my initial choice. However, it was much later when I was working as a special needs educator at Prospect Rainbow, Penang, that I realised a shift in interest.

Initially, I never considered working with children with special needs, as I can be quite an emotional person and feared that I wouldn’t be able to stomach the demands of working with these children. Truth be told, I actually broke down on my first day when a child with Down’s Syndrome ran to his mother and gave her a hug! However, after spending more than 2 years with the children I had the privilege to work with, I realised that it was one of the most rewarding things I’ve done. Everyday was an unexpected day with new challenges and new achievements to celebrate. It was then I realised, that I do enjoy working with children and their families.

Not only did that inspire me to consider being a child psychologist, but my then boss, Mdm Sherine Ann Selvarajah, who is a developmental psychologist herself in Penang, encouraged me to pursue my Masters in child development, instead of counselling psychology. She played a big role in pushing me to where I am today, mentoring me by allowing me to be her understudy after I returned upon completing my masters in Nottingham, UK. Until today, she remains an inspiring mentor and friend.”

What are some of the challenges you face?

“I think one challenging part of the job would be to allow parents to understand that their child may require some support. This includes having to hold a safe space for parents to come to terms with a particular diagnosis. Understandably, there are instances where parents are in denial, and choose not to pursue the support required for their child.

Being in the field, the importance of early intervention is almost always stressed, as it is required to ensure the child reaches their full potential. I believe the child’s needs should be of utmost importance.

Though it may not be the most desirable outcome from a professional point of view, another challenge is to allow myself to trust the process and respect their decision as parents of the child and hopefully, eventually, they are able to get their child the required support.”

What is your favourite part of your job ?

“I would have to say it’s when I get to meet different kids of different ages, and spending some time with them to get to know them better. It always puts into perspective that it’s ‘child first, diagnosis second’. Not to mention, when they respond well to the support plan. It’s amazing what they can achieve when you remember what they’re capable of with some extra patience and an effective support plan. It’s always nice to see how they are capable of doing so well when placed in an environment tailored to their needs. Needless to say, when the child is happy, parents are happy too. And that’s what it really is about, at the end of the day; a better quality of life for both the children and their loved ones.”

Tell us some of the stigmas and stereotypes around autism you wish to break & why.

“I think this is such a large area to look into and discuss, as an entire topic on it’s own. One of it would be how individuals on the spectrum are viewed by society. They are viewed as unpredictable or dangerous to be around. I think this largely stems from how meltdown or behaviours that do not fit the definition of ‘normal’ are viewed by society. It doesn’t help that we are a collective culture, making it more difficult when a person on the spectrum stands out instead of blending in among what society is used to, or what society views as socially acceptable behaviour. Not to mention how religious and spiritual beliefs may play a part in adding to the stigmas attached to these behaviors.

Putting those factors aside, when it comes down to it, stigma comes from a lack of education and exposure to what one may view as different. You fear what you do not understand. So education in every aspect, right from what it is, to how it may present itself and how different behaviour should be approached, need to be given importance. This includes at school level, among families, government initiatives, and society coming together to realise that the community is what makes the experience for any individual, typical or atypical. It’s about providing a space that works for a diverse community.

Other stereotypes often include the abilities of a person with Autism, or how they see unable to communicate with others. Although these are areas taken into consideration during diagnosis, it’s important to remember that every individual with Autism is different and should not be generalised. Similarly, their abilities and the way they communicate may be different from person to person. It’s about changing how ‘typically developing’ individuals communicate with someone with Autism. Essentially, it’s about levelling with them and seeing things from their perspective. Only then will you realise that we’ve just been doing things differently. Just like speaking another language from theirs.

Achieving this would then change the perspective of society and break stigmas of individuals on the spectrum because only by understanding, accepting and integrating a diverse community, will individuals on the spectrum have a sense of belonging within society. Needless to say, a sense of belonging is one of many basic needs anyone requires, while also providing inidviduals on the spectrum and their families a better quality of life.

Having said that, it is no easy feat, and we are a long way from truly embracing diversity. One way is to start small. I always tell parents that at the end of the day, ‘child first, diagnosis second’. When you change your perspective, your focus shifts as a parent. You enjoy the little things more, you’re fiercely fighting for your child and their right of belonging in society. Trust that slowly but surely along the way, you’re educating society as a whole. When you are able to come to terms with the fact what your child needs may not make others feel comfortable, I think that’s a win for any parent.”

The individuals highlighted in this piece are usually the first point of contact. These are the people who render the diagnosis after careful assessments and deliberation. Their role is so important and sets the tone of how an individual/caregiver approaches the next step, which is intervention and other activities. Our next piece, Part 2: Saluting Unsung Heroes, highlights individuals who provide interventions and inclusive activities.

Leave a Reply

Related Posts

en_USEnglish
en_USEnglish ms_MYMalay