Empower caregivers to monitor for progress

THE number of autism diagnoses has risen significantly in Malaysia.

This was recently reported by Women, Family and Community Development Minister Nancy Shukri.

I’m commenting on this because too often, I meet parents and siblings of individuals living with learning or developmental disabilities who ask me what they should do now that it’s been 10 years since diagnosis.

The fact that they can ask me such a question and not actually seek follow up assessments instead shows that they weren’t educated and empowered to do something about the diagnosis in the first place.

Once diagnosed, monitoring is essential. Why? So that treatments can be evaluated for effectiveness.

Yes, evaluated. Unless you measure changes, you won’t know if there’s progress. That’s the whole point of a diagnosis – to inform treatment methods.

For me, any diagnosis based on a multitude of assessments, eg, biological, cognitive, emotional, behavioural, familial, historical, and environmental, should provide some sort of a roadmap of recommendations towards recovery or rehabilitation for functional independence.

If such a roadmap is not given then the diagnostic label becomes more of a highlight of disability, abnormality, and limitations, often leading to a sense of disempowerment, shame, and the loss of agency.

Such a situation seems to be very common, which is sad but not unexpected because there are many systemic and structural barriers to getting help: limited numbers of specialists; expensive intervention services making them inaccessible to many; poor autism literacy among healthcare providers, welfare professionals, and educators; social stigma; absence of culturally appropriate assessment tools; insufficient policies; and a general lack of information on where to find help, among others.

With this increased prevalence of autism, I hope there’s also an increase of developmental care where parents and family members of those diagnosed are empowered to monitor for progress and seek resources for help.

I also hope that measures are taken to foster interdisciplinary and multifunctional collaborations to support families in providing their autistic members the skills, resources, and environment to be independent if not thrive in society.

PROF DR ALVIN NG LAI OON

Department of Psychology

School of Medical and Life Sciences

Sunway University