The HEALTH : June 2019 | Page 16

The Health | june, 2019 16 Issue: Autism The gap in intervention The awareness for autism among Malaysians are quite high, but the services provided for early intervention and treatment leaves a lot to be desired D r Juriza Ismail has been a paediatric specialist for almost 20 years. Her passion to help children with their development have positioned her in the Child Develop- ment Centre (CDC) at Hospital Canselor Tuanku Muhriz (HCTM) through most of her career. Her experience as a specialist, lecturer, and researcher have put her in a position to explain one of the biggest problem we have for the intervention and treatment of autism in Malaysia. Lacking in services The CDC at HCTM is the pioneer hospital based child development centre in the country. The centre provides a wide array of services for children with special needs. It boasts impressive set of services which include con- sultations by developmental paediatricians, clinical psychologists, counselor, social welfare officer, and also provide psychosocial support (for the parents as well) and general health education. It is also the resource centre for information regarding school with special education, early intervention centres, and rehabilitation centres. CDC is one of the entrance screening centre for children with autism spectrum disorder to enter Genius Kurnia. The centre also work in a multi-disciplinary team together with the physiotherapists, occupational therapists, speech therapists and clinicians from other disciplines in managing patients. Dr Juriza says that the waiting list for parents to come and get consultation at the CDC currently stands at 11 months. This indicates that the awareness for autism is on the rise and parents are seeking help for their children at an early age. General paediatricians and general practitioners are also becoming aware of the autism and picking up the signs early, thus early referrals are made. “The awareness for autism is no the rise now, however what happens after parents know that their child has autism is the main concern. The government service pro- viders can’t quite cope with the demand,” Dr Juriza tells. “Private centres providing intervention for autism is generally quite expensive. It costs huge amount of money and time, which a lot of parents in Malaysia doesn’t have.” Trouble for the middle to lower income group The centres for autism in Malaysia is quite readily avail- Dr Juriza leads the Child Development Centre in Hospital Canselor Tuanku Muhri. able, however a lot of them are pricey and appeal to only a fraction of the population. Both parents living in the middle and lower income group have daily jobs, which makes them less capable to spend time in their child’s intervention as well as paying for the fees. “The best approach for early intervention for autism is when the parents are doing it themselves at home in between attending therapies. Yet with a lot of parent now working full-time jobs, this has become a luxury,” she explains. Centres for early intervention could also be expanded further in major hospitals and clinics across Malaysia so that more parents and children have better access. The effect comes from commitment Although the CDC Dr Juriza helms in HCTM has a very long waiting list, the parents who are enrolling their children there are found to be fully committed for the process. “I have parents from other states who are will- ing to wait for the appointment date regardless the long duration. We do have a triage system in which children who are less than three years old or with worrying behaviour would be prioritised for an early appointment.” According to Dr Juriza, the main goal for early intervention is to have the children with autism be enrolled in the normal stream in school, being able to socialise enough, and ultimately improve their overall quality of life. This is why Dr Juriza stress the importance of early intervention. According to her, the best intervention to be done is within the first three years of the child’s life. That is when the brain is developing with the brain cells connecting rapidly. It is therefore easier to instill the children with new developmental skills. “For parents suspecting their child to have autism, you need to get him or her to see a doctor as early as possible for assessment and diagnosis. Once you know that your child has autism, find the time and put in the effort to be involved in his or her intervention therapies. The best impact of intervention will usually be from the full involvement of both parents in continuing them at home.” Dr Juriza also looks into the religious part of the problem. “For Muslims, a child with autism is considered a child of heaven. Therefore for parents, taking care and improving the child’s quality of life will also ensure your path to heaven as well.” – The Health Ronald McDonald House’s gift to autism One of the activity rooms in the CDC, where children are assessed by a multi-disciplinary team and does activities for group therapies. As an NGO operating in Malaysia for over 20 years, Ronald McDonald House Charities (RMHC) Malaysia has been well under the radar for most of us. We might have heard of them when we go to eat at McDonald’s, where we can usually see the small donation box near the counter. RMHC is a fundraising NGO focusing on three main pillars here in Malaysia. The first, and the main pillar for the organisation is to provide a house for families to stay in while one of their own gets treated at the hospital. For now, the RMHC is based in Bandar Tun Razak, as a part of Hospital Canselor Tuanku Muhriz (HCTM) UKM. For parents who have their children getting treated at the hospital and are living far away from it, they are able to be closer when they stay at RMHC. Provide for children with autism Even though RMHC’s main focus is the house, they have also come up with ways to reach out to the community. One way is to provide sensory rooms in numerous healthcare centres for chil- dren with autism. “We are always looking to help, and even though building another house is an on-going endevour, we try to do as much as we can. This is why we decided to provide the sensory rooms,” says Nasri Nordin, General Manager for RMHC Malaysia. “We have found that in a lot of hospitals and healthcare centres, there are always some unused space; a room no one ever use, perhaps. We thought that if we aren’t able to build another