MoH to establish new autism council, registry

The two are expected to be formed at the end of the year, minister says


THE Health Ministry (MoH) will set up the National Autism Council and the National Autism Clinical Registry.

The former will bring relevant stakeholders from different ministries, NGOs and patients to become an authority to an evidence-based intervention.

Health Minister Khairy Jamaluddin Abu Bakar (picture) said people on the spectrum have to go through it their whole lives, therefore they need training on both vocational and education to live independently. 

“I hope the soon-to-be-formed council will address common issues among autistics individuals such as employment opportunities and continuous support for people on the spectrum. 

“This is especially for autistic adults whose primary caretakers, which are their parents, will leave them one day,” he said during the Transforming Strategies and Empowering Autism Care and Autism Spectrum Disorder (ASD) Workshop today.

On the other hand, the National Clinical Autism Registry will include ethical and privacy concerns which will be based on consent.

“With a registry, we will have a better gauge of what kind of interventions to take,” Khairy said, adding that the two are expected to be formed at the end of the year.

Meanwhile, general paediatrician Dr Sathya Ramachandran said among the main issues of autism diagnosis and intervention include information inaccuracy, insufficient skills for parents and caretakers, and the lack of therapists, clinical psychologists and facilities.

“The council will be an authority on evidence-based intervention. There are many types of interventions out there, some of which are not safe, not evidence-based and not proven to be effective. 

“The council is also going to be responsible for maintaining an up-to-date national online platform, on all information pertaining to autism,” she added.

The council will provide verified information on the daily living activities, school readiness, sexual education, social skills, vocational training and employment agency. 

Based on MoH’s modified checklist for autism in toddlers which began in 2014, more children have been diagnosed with ASD as early as before the age of four.

As of last year, a total number of 598 children aged between 0 and 12 were diagnosed with ASD.