By Desiree Kaur
Photo source: Unsplash
Our last piece titled Saluting Unsung Herores, put the spotlight on three individuals who are usually the first point of contact into the world of neurodiversity. In this piece, I would like to highlight the practitioners who work closely with neurodiverse individuals through Occupational Therapy (OT), Speech & Language Therapy (SLT), Special Education Classes and creating inclusive spaces for all. These unsung heroes work tirelessly and have chosen this path for the love it. So, I would like to shed some light on what they do and also hear their views on stigmas around autism they would like to break. This piece marks the end of Autism Awareness & Acceptance Month, but in no way does this end advocacy for the year. Advocacy is lifelong and these noble practitioners are a testament to that.
Nur Ayunni Filzati, Co-Founder E’D Therapy & Consultant Occupational Therapist
Nur Ayunni Filzati, 28, is the Co-Founder of E D’Therapy, a therapy centre for Special Needs Children and a full time Consultant Occupational Therapist. As a Co-Founder, she works with her team to provide the best intervention services for special needs children. Being an OT Consultant requires her to assess and reassess individual needs for every child; both typical and atypical. She also designs and plans suitable intervention programs to support the child and families upon participating maximally in everyday activities of life. Additionally, she also trains the teachers at her centre on behavioural handling techniques and play skills to ensure successful therapy sessions. She’s worked in this line for almost 6-years.
Why did you choose this line of work?
“I love playing with kids and I’m amazed at how pure their love can be. During my internship, I had to work in a hospital with several departments. I’ve worked in neurology, psychiatric, orthopaedic, cardiology, but being in paediatric area inspired me to help children with special needs.”
“I believe children have beautiful prognosis of intervention — with consistency of therapy and strong will, we can see how magic works. I aim to provide the warmest place for special needs children and make therapy sessions feel like home.”
What are some of the challenges you face?
“Parents’ denial. We believe, early interventions are life changing for the child but some parents refuse to start the therapy early, although the red flags are clearly seen. Parents in denial of having special needs children is an injustice to the child. I spend most of my time explaining to parents and formulating plans to help their child, for better progress, towards better future.”
What is your favourite part of your job?
“Seeing my students’ progress and how magic does its work. I’ve witnessed so many beautiful improvements and achievements in my students, which comes from parents’ endless hard-works and support. I’ll always improve myself and guide my team to provide the best intervention services for my students. And to see parents finally smiling and proud of their children’s achievements, it’s something I can’t express in words.”
Tell us some of the stigmas and stereotypes around autism you wish to break & why.
“The stigma that ASD children are crazy, dangerous and harmful.
I wish that I can tell everyone how beautiful ASD children are. I wish I can let everyone know working with these pure souls is the best decision I’ve made in my entire life.
I wish to tell everyone to not fear ASD children and treat them equally as how any child is treated. I’ve been in few situations where people were being judgmental towards my students just because they’re autistic. They didn’t let my students in sessions with the typical kids just because they are different. I believe ASD children also deserve equality in both, education and society. I wish to educate more people on the importance of going for early screening and therapy sessions.”
Lim Shu Yi is a Speech Therapist
31 year old, Lim Shu Yi is a speech therapist by profession who practices at a public education centre and at a private multidisciplinary intervention centre called Oasis Place. She’s been in this field for 5-years. As a speech-language therapist, she works with special needs children and their families to formulate goals around interaction, communication, language and speech. Her work involves firstly establishing a relationship with the child and family, then being a detective to their interests and individual differences mostly through play activities. Once that is established, she tries to meet them where they are at before supporting them up the developmental levels together with their families.
Apart from individualised direct support, she also runs parent training sessions, conducts workshops and trainings for educators and school staff. She is also actively involved in screening school aged children for special education needs.
Why did you choose this line of work?
“My first and biggest inspirations are my parents. They were both passionate educators who had always believed in holistic education. In search of finding a career in the education field that I feel deeply connected with, I eventually discovered speech therapy as a career within the field of special education. I am blessed to have met many amazing mentors, and seniors along the way who, through the work that they do and the values they hold, have inspired me to further develop myself on this continuous learning journey as a therapist.”
What are some of the challenges you face?
“Every child is unique. Relationships take time to build. There is no one size fits all kind of speech therapy. Therefore, the challenge comes when there is an expectation of a quick fix, when what is needed is to slow down to go faster, connect and meet the child where they are at before supporting the child up the developmental ladder.
Another challenge is that there are not enough of us to go around. There is still much work to be done in this field. So much is needed, but so little time and resources. On top of that, there is still so much to learn about how to support children with different learning needs. Thankfully, I am fortunate enough to be working in a multidisciplinary team in a transdisciplinary manner, where we constantly learn from each other in supporting the child in a holistic manner.”
What is your favourite part of your job?
“My favourite part of the job is when I see the sparkle in the eyes of the child waiting on me for more; when I hear mothers telling me that they had enjoyed a shared moment of laughter for the first time with their child during a playful hide and seek and when I hear fathers sharing that their child turned back at them for the first time with curiosity and anticipation of another round of roughhousing. And most of all, it makes my heart full when parents are seeing and appreciating their child for their strengths rather than their limitations and feeling more empowered to continue to strive for that connection and support their child.”
Tell us some of the stigmas and stereotypes around autism you wish to break & why.
Autistic people who do not speak are not able to communicate.
“There are many reasons as to why autistic people do not speak. One of the conditions that can co-occur with autism is Apraxia, a condition related to difficulties planning how the mouth moves to say sounds and words. However, this does not mean that all non-speaking Autistic people are unable to understand others and convey their thoughts and feelings. With the help of alternative means of communication, such as using pictures, gestures or an AAC (Alternative and Augmentative Communication) Device, autistic people can learn to use these ways to communicate their thoughts and feelings and interact with others. This is a stereotype I wish to break because autistic people deserve a voice too. Finding an alternative means of communication apart from speaking should be of priority and a right for all.”
Autistic people have an inability to feel and have feelings for others.
“While it can be difficult for autistic people to express emotions, and connect their emotions with words or actions, in my experience autistic people can still experience emotions especially through the people who have close relationships with them. In fact, some Autistic people can be very emotional but become so overwhelmed by their feelings that they avoid establishing contact to keep their emotions in control. With appropriate help and support, and through warmth and intimate affection, autistic people can experience emotions and learn to express and seek out emotional support that they need. “
Fazilah bt Sharani used to work as a special education teacher at a private centre
Fazilah bt Sharani worked at a special needs centre in Shah Alam providing early intervention for over 4-years. During her stint, she was quickly promoted from special education teacher to centre manager for two of their branches. As a teacher , she developed Individualised Education Plans (IEP), working closely with OTs and parents/caregiver to implement them for her students. She also conducted regular reviews with parents to update on progress and find out more about the home environment. As Centre Manager she managed the teachers and therapists at two centres as well as managed queries from parents and reporting back to the Management. She recently left this line of work to start her own business but her love for children with special needs is unwavering.
Why did you choose this line of work?
“Actually this field is quite challenging as it is not easy to care for or teach these special children. It takes a lot of patience and there needs to be a strong nature of love. Patience and love are what pushed me to work in this field.”
What were some of the challenges you faced?
“The main challenge is to understand and gain the trust of my students who were children with special needs. To gain trust is a bit difficult in the early stages but with effort and determination, the rewards are fulfilling.”
What was your favourite part of your job ?
“The interesting thing is when I gain the trust of these kids, they are able to accept instructions and complete assignments well.”
Tell us some of the stigmas and stereotypes around autism you wish to break & why.
“Among the common stigmas is that these special children need to be isolated because of their difficulty communicating and socializing. In fact, these special children have their own talents. Parents and the surrounding community need to support them in terms of learning and also socializing. Not by isolating them from the outside world. There are also those who say that some of these children are violent, rude and so on. To overcome this issue we need to have the knowledge to support this special person and make the necessary accommodations.”
Anne Sivanathan has been advocating inclusion for over 25-years.
Anne Sivanathan truly walks the talk where inclusion is concerned. Not only does she support and advocate it, but she actively champions this cause by creating community spaces and working with various NGOs and interest groups. She is the founder of the Inclusive Outdoor Classroom, an initiative that provides a space and activities for children of all abilities to interact and play. Anne is also board member of NASOM, Community Leader of residents for Zone 3 MBSJ, part of the National Association of Early Childhood Care and Education Malaysia (NAECCEM), Co-Leader for Inclusion Working Groups for Special Needs in USA, a freelance lecturer for Inclusion and Special Needs and a Consultant to Toybox Creations and Technology. Her vast experience in this field spans 25-years.
What steered you to do what you do?
“My background in training and education as well as my pre-school programme that was for all children regardless of abilities inspired me. I am also guided by a strong passion for the work. Inclusive education has benefited my children , nephews and nieces, hence I believe it is for all. I run programmes, influence policy and connect the special needs community to the larger communities,”
What are some of the challenges you face in doing what you do for the community?
“Some of the challenges include the public not wiling to move the disability agenda towards accommodations and better accessibility. There’s also the myths about disabilities and inclusion and lack of funding. “
What is your favourite part of what you do?
“Meeting the challenges, making substantial changes for example the playground in USJ 11/5. Seeing joy in a young child’s face. Giving hope to parents. Making the community stronger through inclusion. Modelling, training and influencing young people to volunteer. Personally being an avid learner myself.”
Tell us some of the stigmas and stereotypes around autism you wish to break & why.
“Some stigmas include that hyperactivity that will lead to an attack. It is important to educate the public that the environment may be a factor that triggers that. Another stigma is that they can’t communicate. Technology can be used as an aid. There’s also the perception that all autistic children when given a free space they will run. Ultimately, it’s about understanding them. We need to have more public awareness around autism. What we did in Subang Jaya with MPP3 should be a model for the nation for autism and inclusion.”
Our unsung heroes are not thanked often enough. These individuals chose this line for the love and passion. The movement for inclusion and breaking stigmas needs to be collective effort by all – from autistic individuals, the neurodiverse community, practitioners, caregivers, government, community, etc. Everyone has a role to play. Everyone deserves to be heard. Together we are stronger as a society. Always remember this, we are all humans first, regardless our abilities. Once when we truly embrace this, inclusion will follow.
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