Parents often ask me for advice on what can help their autistic children. I hesitate to reply as I am neither an autism expert nor a parent, but I can speak for my unique situation as a child. What may have worked for me might not work for other children.
As a child, I was very quiet and compliant. I had the intellectual capacity to make sense of complex concepts and was studying university-level science textbooks borrowed from the national library in upper Primary school (much to the dismay of my teachers who told me to focus on the school textbooks instead). However, I did not understand the meaning of what I read – I merely noted the facts down.
1) Use a Spartan Therapy Room: In contrast to a room filled with sensory stimulation, I might have functioned better in a room with minimal distractions that forced me to focus on the task at hand.
- Soundproof the room and cover the windows.
- Cover the walls and floor with a uniform soft color without patterns, shapes or lines.
- Constantly play gentle, calming music (e.g. Baroque Music)
- Keep a minimum amount of furniture (e.g. a small table, cushions, a storage cupboard, a sleeping mattress). Avoid unnecessary decoration such as photos and artwork. Items in the room should blend in rather than contrast with the background color.
- Use only non-flickering lights such as LEDs and halogen lamps instead of fluorescent lighting. The flicker from florescent lighting may cause discomfort and irritation for some children.
- Check for odors and other sensory stimuli; avoid anything that may draw attention towards it. For instance, a shiny piece of metal reflecting sunlight or perfume worn by a teacher can be quite distracting.
2) Do Self Awareness Exercises: A full-length mirror can be used to help me become aware of my body and behavior. A voice recorder can help me become aware of what my voice sounds like. I did not notice that I had issues with how I behave and express myself, for instance mumbling instead of speaking clearly to others. Such issues often lead to communication and social difficulties as well as bullying.
4) Check for Allergies and Restrict Diet accordingly: I used to suffer from allergies (e.g. persistent runny nose, bloated stomach, asthma attacks). Although I was already on a casein-free diet, going gluten-free was likely to help too. Casein is found in milk and gluten in wheat, oat, rye, and barley.
5) Check for Medical Issues and Treat Them: I had nutritional deficiencies, a weak digestive system and chronic fatigue that I eventually fixed by myself with nutritional supplements. I have also read that heavy metal poisoning and yeast infection of the gut can create behavioral issues.
6) Use the Picture Exchange Communication System (PECS): I would have found it easier to express myself if I had access to such a system. To save money, we can make our version: download clipart from Google Images, organize and print these from PowerPoint, cut them out and then laminate these pieces.
7) Keep Track of Events and Tasks Using a Journal: I eventually discovered this method by myself in upper Primary school to write down things that I needed to do in the same place so I will remember to do them. If I had been guided to do it very early (perhaps using PECS when still illiterate), it would have helped me.
8) Do Talent Development: I was very interested in science and computers. I was already reading university textbooks in Primary school and taught myself programming when I received my first computer. However, my parents failed to capitalize on these to develop talents that can give me an advantage in my adult life – I was left to do whatever I liked and spent much time playing computer games as a result. My teachers also strongly discouraged me from learning anything beyond the school textbooks because that knowledge will never appear in exams – thus I missed many opportunities to widen my knowledge.
9) Put me in an Autism-Focused School for the Intellectually Gifted: Having to deal with bullying and social interaction with peers gave me a lot of stress, but not much learning experiences as I was unable to integrate what I learned into my own life. An environment that recognizes my needs and where I can slowly transition to more advanced social interaction would have helped very much. However, it would have been impossible for my parents to find such a school in Singapore then (and even today), so home-schooling could be the next best alternative.
Parents need to take an active role of investing in the child instead of just trying to manage behaviors. The child is likely to outlive the parent in a world of automation and rapid change. Taking a myopic view will only push the problem into the future.
Hence, I suggest parents consider the long-term implications of various interventions. Some are excellent for managing behaviors but do not promote any intrinsic understanding or empathy. Some require much work from parents but provide great returns, while others are less demanding but also not helpful. Quite some interventions have no scientific proof and can be considered scams. Spending money needlessly on useless interventions, or interventions that show quick results but provide no long-term solutions, will not be sustainable.