Where Do We Start?

Looking at the broad picture, the solution is not about having more schools or enough teachers or professionals but rather the issue of detecting and addressing the problem from the onset which is early diagnosis and intervention services. 

Concerted effort must be put into identifying such cases, intervene early enough to prepare these children for preschool even before formal education is contemplated. Given a choice any parent would naturally like to see something being done which benefits their child first and foremost.  Where do we start? As always the best is to start from the beginning.

Early Diagnosis
One must bear in mind that autism is a lifelong disability and there is no cure. We now know that professionals can diagnose children as young as 2 years of age. Screening and the role of the pediatrician have become even more critical as we recognize the stability of early diagnoses over time and the importance of early intervention.

At this point experts working with children with autism agree that early intervention is critical. There is professional consensus about certain crucial aspects of treatment [intensity, family involvement, and focus on generalization] and empirical evidence for certain intervention strategies. In western countries, early intervention starts from birth to 3 year, thereafter they are prepared for transition to pre-schools and follow-up treatment.

In Malaysia we do not have a mechanism in place to detect developmental delay.  The government namely the Ministry of Health should consider making it compulsory for all pediatricians to carry out simple screening tests on children coming for their periodic inoculations.  This would actually put in place a wide safety net which will trigger the red flags in suspect cases and save time and effort on the part of parents who may be unsure of such developmental milestones. These cases can then be referred to a clinical psychologist, psychiatrist or developmental pediatrician for further action.

What's Next?
After the results are known the parents must make the enormous decision as to how to help their child. The one thing I found sorely lacking and still is, is written material/literature to help parents at this juncture. Who do you turn to for help? There do not seem to be any handbook or manual to guide parents.

They get feedback and recommendations from well-meaning friends, relatives and even strangers and are at a loss as to the next course of action. They have difficulties digesting the overwhelming information and various treatment approaches.  While some in their earnest desire to do the best for their child opt to try all without considering the appropriateness of each plan.  Some don’t give enough time for a particular plan to bear results and hop onto the next treatment plan [programme hoppers]. Others just foot the bill for treatment plans without having a clue of  the process involved. A small number alas, cannot come to terms with the diagnosis and are in a state of denial for years letting precious time slip by. In instances like this, parents need counseling to come to terms with their grief, manage it and move on. To say that they must overcome it would be a near impossible task for the sense of loss will always remain.

In the short span of time I have found it unbelievable how simple minded some parents are. They are terrified to ask for assurance in the form of qualifications and experience from the very person they are entrusting their child’s welfare with.

Many may argue that it is so hard to find qualified professionals and even if they do manage to, some of these professionals are unable to give them the requisite number of hours they need for their child. At the same time, they could be afraid of offending these professionals and therefore take whatever they are offered. It is true that  qualified professionals are hard to find and more so, appointments with experienced therapists are normally subject to some form of waiting list.

Take for example, a therapist who may not be so experienced but has the right attitude, foresight and time to sit down and explain to the parents or do the following:

• the child’s strengths and weaknesses,
• take into account the parents’ expectations e.g. whether they intend to send the child to mainstream school, special education class or home schooling,
• take into account the parents culture, financial background and resources, i.e. the amount of time a parent can allocate for carry over activities,
• formulate the amount of control and say a parent has over the drawing up of a treatment plan,
• work out the amount of time one has to work with e.g. a child who     is aged 5 with 2 years to work with before formal schooling, compared to a child who us aged 3,
• consider the flexibility of the plan to revise downwards a specific goal or to incorporate new goals depending on the progress made, and
• recognizing the importance of discussion and review when necessary with other therapists working with the child.

If you find a therapist who has all the above qualities, you have found the perfect person to work with your child. The relationship you establish is not only between your child and the therapist but also between you and the therapist. All therapists should work together with you and should respect your child first and foremost.  Be wary of therapists who adopt a hands off attitude when working on your child. All studies show that parents involvement is crucial for a child’s development. You are the parent and you know your child best, you understand your child’s needs, and what is helpful and what is not. You have the most information on and take the responsibility for your child’s growth and development. You are an important person in your child’s early intervention programme. Never let any individual bulldoze/browbeat you into submission.

Once a decision is made on any treatment plan, one must stick to it for the duration agreed upon. Always keep a journal or notebook as to what works and what does not. Be open to suggestions from all quarters but keep an open mind. Be objective  and never be afraid to voice your concerns with therapists working with your child.

How We Can Help
Most referrals to us conclude in a first consultation. We discuss with the parents their fears, anxiety, expectations and the various treatment plans available. Should they wish to proceed further, an appointment is fixed for a formal assessment which is to be completed within one week. This will include a developmental test, occupational assessment and a speech assessment, together with, if opted for, a music assessment. Parents have an option to have a written report for all the tests done.

Once all the results are tabulated, a meeting is arranged with the parents together with a proposed treatment plan detailing the  types of therapies and the total number of therapy hours taking into account the culture, goals and expectations, parents’ commitment as to time.

The advantage of a one-stop-centre with a multi-disciplinary team is that we can target common goals in all the therapies, unlike most individual private sessions where each therapist has his or her own goals and agenda in treating the child.  Although the approach in each therapy is different, we can ensure that the child is receiving consistent application of the trainings.  Additionally, the therapies complement each other, wherein the respective therapists address the goals set out and reinforce specific needs through their relevant expertise.  Goals are prioritized according to the needs of the child and to the expectations of the parents, to be reviewed regularly to track the child’s progress.

As parents assume the role of training the child together with the therapists, with an equipped knowledge of the techniques, the child can expect consistent application at home, in the centre, and at different settings.  Although it can be a huge effort for parents to adapt to new and unfamiliar techniques, the effects of continuous training will produce rewarding and long-lasting results.