Malaysia to Have A National Autism Council Soon

By Desiree Kaur

On 14 July 2022, the Ministry of Health (MOH) Malaysia, brought together various stakeholders for a workshop titled: Empowering Autism Preparedness and Response. The participants included representatives from various government departments, NGOs, Allied Health Practitioners, private entities, parent advocates; and the most insightful voices of all, self-advocates of autism. While some were under the impressions that “this was yet ANOTHER workshop on autism”, little did anyone realise that the very next day, the Minister of Health, YB Khairy Jamaluddin, would announce the intention to set up a National Autism Council to look after the interest of the community in the long term.

The main agenda on 14 July consisted 3 Plenary sessions and 8 breakout sessions held simultaneously. Plenary 1 titled: Building an Inclusive Childhood Developmental Ecosystem in Singapore 1988 – 2021 by Professor Ho Lai Yun of the Singapore General Hospital. Professor Ho shared insights into Singapore’s 30-year journey towards inclusion in schools and how their journey still continues. His most touching remarks on the final day of the workshop was that, while Singapore took 30-years, Malaysia does not have to take that long. He also said that it would be a long and winding road, and there will be times where we take 3 steps forwards and 2 steps back, he was very encouraging to remind everyone, that it is at least 1 step forward.

Plenary 2 was titled: Establishing and empowering parenting programs in Malaysia where we heard from Pn Nora Hamid from MOH. A compilation of various training modules prepared by graduate students and various organisations were presented. The intention was to know what resources were already at hand but required a platform where it could be curated with easy access for all. Plenary 3 was titled: Clinical Registries for the Improvement of Practice in Autism Care by Dr Nuraidah Mohd Marzuki from MOH. Dr Nuraidah detailed what a registry entails and put forth serious consideration of what extent and implications are national registry could have.

Next, the 8 breakout sessions covered topics such as screenings, diagnosis, identification of hospitals for autism services, parent training, parent support, various types of intervention needs from Occupational Therapy (OT), Speech Language Therapy (SLT), Activities of Daily Living (ADL), School Readiness, Sexuality and topics covering Adolescents and Young Adults. The breakout topics were put together in a rather comprehensive manner to cover all ages, from the point of diagnosis to supported living and employment. Each group presented their ideas and recommendations passionately and in a spirited manner as everyone provided insights and suggestions that were practical.

Later that evening, each group was given the opportunity to present their breakout session outcomes to the Consultant, who would present to the Minister on 15 July, Dr Satyabama Ramachandran. No one wavered in terms of energy and enthusiasm, despite the late hour and presentations to Dr Satyabama started after dinner on 14th July and ended well after the air conditioning had been turned off, till around 12am on 15 July.

Dr Satyabama listened intently and asked more questions, however there were so many areas that needs to be looked into based on the recommendations made. Hence, in her presentation to the Minister of Health, Dr Satyabama mentioned that a detailed paper of all the recommendations from the workshop would be put together for his attention while the presentation covered some immediate action which could already be set into motion such as the formation of a National Autism Council.

The entire group was privileged to hear from autistic adults too. Their perspectives and insights on topics ranging from sexuality to diagnosis or the lack of options for adults to get diagnosed, as well as mental health support, were truly eye-opening for many. Some have gone as far as calling this the “Workshop of Dreams” because, not only were voices heard, but an immediate outcome was already put in motion by announcing the intention to set up a National Autism Council. Through a Council, many issues can be discussed in collaboration with various government and non-government departments. No longer will party’s work in silos, and more collective efforts can address key issues such as insurance coverage, the use of Alternative and Augmentatives Communication (AAC) Devices, the lack of Allied Health Practitioners to serve the population and many others.

I was most encouraged to see that everyone came together regardless of their background and vocation, in support of the rights of persons with autism. While I had the privilege to be in any breakout room, I stayed in the room where Speech Therapy was discussed at length. It is no secret that there is a severe lack of Speech Therapists and Allied Health Practitioners in this country. I got a front row seat in listening to the challenges that plague them day-in and day-out, yet, they wake up every day and do their best, for the love of their jobs and the people they serve. This is true passion. To everyone who has the best interest of autism at heart, I can’t thank you enough. Let’s continue to fight this good fight towards inclusion for all.