My Story :Overcoming Autism Spectrum Disorder- A Mother’s Journey from Diagnosis to Adulthood

When I look at my son today, I can hardly believe that this young man, is the same little boy who hardly spoke a word when he was almost 4 years old. Diagnosed with Autism Spectrum Disorder (ASD) DSM IV, he had many issues as a young child; weak muscle tone, little speech, auditory and sensory issues, dyspraxia, obvious stimming behaviours, amongst other things. Now, my son is 18 years old, a tall personable boy, who did well enough in the “O” levels to enter chemical engineering at a polytechnic, and can articulate his views clearly. He now travels independently, meets up with his many friends from church and polytechnic, and does what many 18 year old boys do; texting, loading photos on Instagram, playing games, meeting various friends for social activities.

Has he suddenly recovered? Is he cured from autism? Current research will say that there is no actual cure for autism (Alexandri,M et. al 2005, Speaks, A. 2011 ).  However, there are certainly interventions that can help mitigate many of the issues facing kids with autism, and sometimes, to the point where the child becomes almost indistinguishable from typical kids. Has my son reached that point? To a large extent, yes. There is still room for improvement nonetheless, but many who have seen him as a little boy, are amazed at his transformation. It would have been nice to say that it all just happened naturally, and that he “outgrew” ASD. But that was not the case. It has been a long and arduous journey, with many sacrifices along the way. But it was well worth it, to see my son become the man he is now. It took great perseverance and patience, loads of faith, and the combined effort from various people, to reach his current level of independence, self-reliance and social competence.

So what is autism? Well, there is a huge spectrum and I do not claim to be expert in Autism Spectrum Disorder (ASD). According to Healy and Lydon (2013), “Autism spectrum disorder (ASD) is a developmental disorder characterised and diagnosed by behavioural symptoms that mark impairments in social and communication behaviour along with a restricted range of activities and interests” (Healy and Lydon, 2013, p567).

So how did I find out that my son had ASD? What did I do after his diagnosis? I believe these questions would run in the minds of many parents who suspect their children may have some special needs.

Based on my research and my personal experience, the following are some of the steps which I have found integral in helping my son:-

1.      Assess Your Child’s Growth and Development

This is something I wished I had taken more care to chart and observe. Looking at a normal child’s growth and development indicators would give you a better idea as to how your child is developing. There are many books and websites that give you information on growth and development indicators of your child, even month by month. Of course, each child is different and we must not get into a panic just because our child has missed a milestone. They are just indicators and may not signify that your child has a disability, but it would help you track the progress of your child’s development. Some excellent websites which I had found include www.cdc.gov and www.healthychildren.org.

2.      Observe Your Child’s Behaviour and Development

This is another area that I think is so important. There were times when my husband and I observed certain things that would have had alarm bells ringing, but the trouble was, we didn’t follow up on them. As parents, we know our children better than anyone else. We may see something about our children that is really different from other kids. However, quite often, out of pride or self-denial, we turn a blind eye to those signals, and disregard the advice of professionals and those close to us.  In retrospect,  we should have asked ourselves some pertinent questions, like:-

·         Has my child poor motor development, balance or co-ordination?

·         Does he/she seem to take a long time to learn how to speak or respond to others? I also think it is important to discount all other possible medical, physiological, or neurological causes of their behaviour. This would include hearing loss, poor eyesight, mental health issues or retardation, speech problems. However, if these possibilities have been eliminated and we are still faced with issues on behaviour and development, then we may have to consult the relevant professionals or therapists.

There are various websites and books which spell out some of the symptoms that are found in kids with autism. As the spectrum is wide ranging, autistic children may have a few of the following traits :-

·         Lack of Eye Contact- They tend to avoid contact as they find looking at people in the eye difficult. They sometimes look at something from the corner of their eyes.

·         Lack of Response- Some may not respond to sounds or questions put to them. As infants, they may start to develop speech but suddenly stop talking altogether.

·         Theory of the Mind- They may be unaware of the coming and going of others- not interested in other people. They enjoy being by themselves. They often have the inability to read social cues, difficulty in interpreting other people’s gestures and facial expressions.

·         Sensorial issues- They may be hypersensitive to taste, touch, smell or sounds, and react strongly to certain noise and textures.

·         Stress issues-They get upset when they are faced with a different routine or structure in their lives. They get easily stressed up by uncertainty.

·         Fixation issues- Sometimes, they have a fixation on an activity or an item and have repetitive obsessive behaviours. An example would be spinning toys, or lining things up in a straight line. Imaginative play or role playing is difficult for them. Some may have speech but talk about a topic obsessively. Difficulty in adapting to changes in routine or interests.

·         Other Tendencies or Stimming actions- Some may have certain tendencies or strange actions like flailing their arms, rocking to and fro, walking on tip toe, hand flicking or flapping, tensing or grimacing. When they speak, their voices may have a high pitched quality, a robotic or singsong voice. They may repeat words out of context, or parrot what they have heard, called echolalia. Some may even been violent or self-harm.

·         Physical actions- Because of the lack of speech, some prefer to point to things to tell you what they want. In some cases, they may have no sensitivity to bruising or burns or may even be liable to violence or self harm.

The above are just some of the symptoms which may be prevalent in children with ASD (Heward, 2010). Children with autism may have some but not all of the above traits. As stated earlier, the autistic spectrum and type of behaviours are wide ranging, and require individual professional assessment and help.

If you find that your child has a few of these traits, it would be advisable to seek help as soon as possible as intensive early intervention always has the best outcomes for children with autism.

3.      Early  Intensive Intervention Is Important for Good Outcomes

It is hard for any parent to admit that his/her child may have any issues. When my friends and relatives first voiced their concerns, I remember my husband and I being  irritated and indignant at any such suggestion. We could not accept that there would be anything wrong with our son. Mainly because of our pride, I believe. We kept thinking that as highly educated people who have put in so much effort for our son, it was unlikely that he would have any developmental issues. How wrong we were! Now, if I could rewind back the clock, we would not have delayed getting a diagnosis. Various research articles (Healy, O., & Lydon, S. (2013), Warren, Z., McPheeters, M., et al (2011)),  show that the earlier a child receives the intervention he needs, the better the prognosis for his development. “Many have argued that this early intervention will allow greater opportunities for a young child to move towards a more typical developmental trajectory because of malleability or plasticity of the developing young brain (Dawson 2008, in Healy and Lydon, p20).

.

It therefore appears that having early intervention, especially intensive early intervention through Applied Behavioural Analysis(ABA) based therapies would very likely have a great impact in improving the lives of children with autism. The science of ABA approach has been shown to produce huge gains in adaptive, cognitive and social behaviours (Dillenberger, 2011) and also recognised as “the most effective basis for treatment for children with ASD” (Larsson, 2005, in Healy and Lydon, 2013, p568).

For my son, I invested a lot of time and money to ensure that he had consistent, daily therapy. Repetition and consistency helped him to learn quickly and progress faster. Fortunately, my son received some UK government funding to help pay towards the therapy sessions. I used different providers for ABA depending on where was as I had felt that this helped my child to adapt and generalize whatever he was learning. I had ABA done by ISADD whilst in Singapore and Indonesia, Play based ABA done by Autism Partnership whilst in Canada, Parents for the Early Intervention of Children with Autism(PEACH)(now known as Child Autism UK) and finally, the CABAS system of ABA was the one I used most in my time in the UK. The latter was very systematic, allowed careful tracking and could cover a wide range of activities to help in speech and language, cognitive, motor skills and social/development skills.

How effective was intensive ABA on my son? In a research project investigating the education of children with autism in 2004, Dr Mark Corness assessed my son using the Gilliam Autistic Rating Scale (GARS) and Vineland Adaptive Behaviour Scales data over a 10 month period. My son’s GARS assessment dropped from a high of 25% to 3% over the 10 month period of intensive ABA. My son was one of the research subjects in the research project over the efficacy of different interventions used on children with autism. It was later stated in the research paper, “The Real-World Effectiveness of Early Teaching Interventions for Children with Autism Spectrum Disorder” by Phil Reed, Lisa A. Osborne, Mark Corness (2007), that the children who were under the intensive ABA programme made the most gains in education and intellect, more than portage and special nursery placements.

4.      Getting a Diagnosis With the Right Psychologist

When I first realized that my son had a few of the autistic traits mentioned above, I really did not know what to do or whom to consult with. My husband and I consulted with a child psychologist in Singapore recommended by a relative, and after about an hour of observations, she just confirmed verbally that she thought he may have autism, and handed us a list of practitioners for speech and language, occupational therapy and other types of therapies. We came out of the consulting room even more confused and none the wiser. We did not know what these various therapies were about and she did not really explain any of them to us. In our minds, it seemed such a waste of money to be told something we already knew- that our son had some developmental issues. What we wanted to know was what we could do about it. It was really frustrating. Our breakthrough only came when my aunt in Perth, Australia, flipped through the phonebook and chanced upon ISADD (Intervention Services for Autism and Developmental Delay). The clinical psychologist was Ms Jura Tender, with over 30 years of experience in this field. Clinical psychology is the branch of psychology concerned with the assessment and treatment of mental illness, abnormal behaviour and psychiatric problems. Even within this branch of psychology, there are various specialisations.

It is of great importance to ensure that the clinical psychologist you see has the relevant experience in autism and developmental delay. Crucially, the psychologist should also have the experience to assess your child correctly and offer some practical advice and programmes which you can apply during therapy, at school and at home. Ms Jura Tender ticked all the boxes. She not only trained with I O Lovass in the UCLA Young Autism Project, but also had many years of extensive hands on experience. In addition, we also saw how some of the children she had worked with  improve so much through the years that they seemed indistinguishable from typical kids of their age. Obviously, every child is different and have different outcomes. But it was encouraging that all of them had some level of improvement.

Clutching at this ray of hope, we flew to Western Australia to see her. The assessment took about 3 hours, including talking a bit about our history and our personal observations. As our son was still only about 3 years, 6 months, we couldn’t do too many structured tests. Some selected items from the Bayley Scales of Infant Development and the Merrill-Palmer Scale of Mental Tests were used. Ms Tender also carefully observed his behaviour and noted the report by our speech pathologist, Ms Angela Bekerti from Indonesia. Getting the initial diagnosis from these 2 professionals proved extremely helpful as they gave very good practical advice on how to start a programme with our son, and what were the things we could do as parents at home. They both emphasised the importance of being consistent in our dealings with our son, and to constantly try out the programmes we have learned from them, at home, either by ourselves or with therapists whom we hired. So for us, it was important that the professionals we dealt with were very open to sharing with us, either in the actual therapy session itself, or through written suggestions, as to what we could do as parents, to enhance our son’s learning.

5.      Read and Research

When we first realized that our son may have developmental issues and autism, we embarked on research extensively. My husband downloaded many different articles on autism, applied behavioural analysis, on bio-medical therapy, on vitamins and supplements, on casein-glutein free diets, and other types of therapies on offer in the market. It was really mind boggling and really quite frightening. As we were completely newbies on this, and we knew that this was going to be a long term investment for our son, we decided to go for the scientifically researched Applied Behavioural Analysis (ABA) therapy.

This was highly recommended by our Psychologist, Ms Tender, who herself had seen many of her kids improve dramatically over the years. She also had many years on her belt, actually running such programmes, with great success. We also watched some of the videos of her children undergoing ABA sessions, and saw how they had improved after a few months and years later. Whilst in Australia for about 2 weeks, an ABA therapist did a few hours a week with son, and we saw great improvement in just after a week. It was all very encouraging. 

To learn more about how we can help our son, we also visited a few families in Indonesia who had gone through certain programmes, to get an idea of what they were doing, and how successful they had been. We realized that some of them spent a huge amount of money on many different types of therapies and food supplements, and really wondered at the efficacy of all these treatments. After speaking to our psychologist, we decided to just mainly pursue ABA for the moment, so that we could also see clearly whether it would work or not. We felt that having too many different therapies could muddy the waters as to what worked or not, and also, financially draining.

Later on, when we moved to the UK, we also visited several families there to see what worked and did not work for them. As parents, it really is important to speak to other parents to get a sense of their programmes and ideas which you can use for your child. It also develops a sense of empowerment, when we research and see encouraging results in other kids with autism. Knowledge is power, and even up to this day, I still trawl through the internet to see what other new developments there are out there, and to see how I can further improve things for my son. As recently as mid 2013, I discovered that my son had convergent vision, which could hinder his reading capacity. Going for vision therapy was a real help for him, and I only found out about this therapy when I spoke with a researcher at the Nanyang Technological University, who was then doing some research work with my son. So speaking with professionals and researchers when you can get a chance, is great, as it will enlighten you to certain therapies you may not have come across yourselves. Almost every year, from the time my son was diagnosed, until he was about 11 years old, I would get my son to do a professional clinical assessment to see how he was progressing, and to see which areas he could still improve on. Just a few months back this year, my son met up with his psychologists in the UK, Dr Kevin Conallen, and Ms Jura Tender, in Singapore, and they were both bowled over by how well my son has progressed and socially adept he was.

It is also good if you can refer your child to a professional counsellor, usually a child psychologist, who can help him with understanding his emotions and feelings. We were advised by our psychologist that allowing our child to ventilate verbally and to also explain to him about his autism would help him to accept and understand himself better.

6.      Training

After we got the diagnosis on my son, my husband and I decided to attend a 2 day workshop on ABA in Western Australia, and received some training. Even when we went to the UK, we would also attend the workshops provided by PEACH, a parent based charity promoting ABA. Again, we would visit a few families who were successful in their programmes, to learn from them and be encouraged. There are some amazing stories of children who have improved so much through ABA on various websites.

As parents, we know our children best, and equipping ourselves in understanding the programmes is vital to making them a success. I personally found that knowing and understanding what to do, helped me to also improve the programmes set out by the professional provider, as we can give valuable insights as to what works and what does not. It can make a huge difference in how fast your child progresses in his programmes. It is also important to maintain consistency in the approaches throughout the programmes. This does not just refer to all the different therapists but also includes us parents, family members and also other care givers, like teachers and home helpers. It is important as parents to have a hands on approach as every hour of the day presents different possibilities to expose our child to learning. We must not take a rigid approach that learning is only within a classroom and only with a therapist or teacher. By talking to our children about what we are doing, and what we are seeing in the outside world, will also help them in being able to generalize and be less rigid. I believe strongly that the world outside presents great opportunities for teaching. It is important not to be overly protective or mollycoddle our children, and sometimes let them learn and do things themselves. Do not just rely on just the therapists who see your child a few times a week to make a difference. It is a combined effort from all sides, and the biggest contributor would be the parents.

7.      Deciding on the Therapy Programme

Dealing with autism can be lifelong commitment and the expenses of therapies can be prohibitive. Some families I had met had a huge array of therapies that were mind boggling and financially draining. As to what extent any or all the therapies had any impact on the child’s progress is any one’s guess. Some parents go to the extreme of making their children take so many vitamins and supplements, that I worry whether there would be any long term effects on the children. Some go on extreme bio medical diets and allow their child only 2-3 types of food for a period of time. I understand why parents are anxious to try anything that would help their children. I was also one of them. However, it is important to also ensure that we do not try so many things that we do not know what has actually had an impact on our children. Also, we need to consider the cost element as the therapies are usually long term commitments. Hence, it is financially sound to find out which one has scientific validation over the years and also whether the family has the ability to finance the therapy for at least a few years.

In our case, my husband and I decided to mainly pursue Applied Behavioural Analysis (ABA). ABA is scientifically validated form of learning and behavioural modification in the context of all physical and social environment.  It offers discrete trial learning and is structured, collecting data for targeted skills and behaviours. It also emphasizes on positive reinforcement strategies to help children to acquire the skills they need. My husband and I decided to embark on the ABA programme, also because we saw the efficacy of the programme on the some of the children we had met. The programme essentially incorporates different activities (discrete trials) covering cognitive, communication, language, gross motor/fine motor skills, and many other areas which we want to target. In the CABAS method, we would have a file of up to 50 different programmes, which are alternated every other day. A speech language pathologist and an occupational therapist would come maybe once a month to review the programmes and make any changes where necessary to meet the child’s developmental needs.

Within ABA, there are also various subsets of ABA which are also good in their own way. For us, there are no huge differences in these subsets, and we tried various subsets whenever we travelled or moved to a different country. Once we settled on a service provider in country of residence, we followed the programme set out by the service provider. Whilst in Indonesia and Singapore, we would consult with Angela Pekerti and ISADD. In London, we consulted initially with PEACH, a Verbal Behaviour consultant, Dr Ron Leaf of Autism Partnership,  and then finally settled on the CABAS method of ABA with Dr Kevin Conallen, PhD, of the London Child and Family Therapy Centre. Whenever we travelled to Canada to see family, we would consult with Autism Partnership and with Michelle Lane, of the Lane Montessori School for Autism, Toronto.  We always made sure that our son, was given the opportunity to have therapy using different methods of ABA whenever we travelled in addition to our home based programme. This helped my son not to be too rigid in the way he learned things, and it also helped us to see different aspects of learning. If we could not get a therapist, I would run my son’s ABA programme and do therapy with him. I would always pack some materials in our luggage for doing ABA sessions with my son. There is no time off or holidays from ABA.

The ABA programme requires a lot of hands on involvement, as the key to success is consistency and practice. All caregivers of the child, including grandparents and even maids looking after the child should have some basic “dos and don’ts” list. We find that being consistent helps to make it clear to my son as to what is acceptable and what is not acceptable. This is especially crucial during the initial stages of the programme. We find that giving mixed signals and different responses will not encourage compliance in the child, but instead confuse and make his behaviours worse. The therapist likewise will have to adhere to the same list of rules on behavioural responses.

We also discovered that our child had auditory processing problems after he was assessed by a speech and language pathologist in auditory processing, Aditi Silverstein. We then embarked on the FastForward programme, which is run by the Scientific Learning Corporation, which helped to address my son’s auditory processing issues. Although my son had perfect hearing, his ears and brain do not coordinate, and so, his ability to process and understand what he was hearing was delayed, thus impacting his learning. The FastForward Basic programme made a huge difference and within a month of using it, my son’s school teacher noticed a difference in his attention to written words. He was also able to take instructions better. I then followed up with the FastForward Reading and Comprehension series.

Auditory processing is a hidden problem which may be easily overlooked as it affects even children with perfect hearing. A good reference on the symptoms of auditory processing can be found in the website of the American Speech-Language-Hearing Association (https://www.asha.org/public/hearing/Understanding-Auditory-Processing-Disorders-in-Children/).

8.      Budgeting

ABA programmes are not cheap. This is mainly because it can be very intensive and ideally, have as many hours per week as possible to implement the programmes. For ourselves, we were fortunate that my son, being a UK citizen and living in the right part of town, received some hefty funding for his programme. Also, in the UK, the therapists, need not be professionals, but can be students in universities who have interest in helping kids with special needs. As long as they have the right attitude, have a willingness to learn from a consultant, the programmes would be good to go. We had to pay them on a per hour basis, based on their relevant experience. The most important thing is to get the right service provider- usually a clinical psychologist with ABA therapy experience. Crucially, the consultant must be open to teach and train the therapists/caregivers what they should do in the programmes at home. In my case, when my son was less than 4 years of age, we did about 2-3 hours a day. On weekends, I would sometimes do an hour to 2 hours a day. There are no hard and fast rules, but obviously, the more practice the child gets, the quicker he will progress. If a family member, friend or helper can volunteer part of their time to doing the programmes, it would, of course, reduce the cost of ABA. It is important however, that they receive proper training first from the consultant or a professional therapist. That is why, early intervention is so important, as generally, they respond faster and improve more dramatically. This will of course reduce some of the costs in the future, if your child becomes more able and independent. They are also smaller and easier to handle at a younger age, and their behaviours and minds more malleable to change.

If the family is more affluent, obviously the child can pursue either a home therapy with a professional therapist or at the clinic each day. However, this can be very expensive, as quite often, we also have to engage an occupational therapist, speech and language therapist to assess and implement some of their programmes into our ABA programmes. We usually consult such therapists once a month. In my case, our consultant already had some experience on speech and language programmes, so we didn’t have to consult them as often. Averagely, we spent about £35,000-40,000 a year on the programme and other related therapies for our son. I am keenly aware that such a huge expense would be a major deterrent for even middle income families. That is why I hope that in the future, there would be more funding to support the training of interested parties to help such children, especially in the early stages of their development. Currently, I have started an integrated ABA programme, to have a trained ABA therapist engaged some hours doing both ABA and shadowing for 2 children with ASD. The focus would be on communication and social skills, as without communication, children with autism become frustrated and this can often result in other non compliant behaviours. 

9.      Partnership with Psychologist, Therapists and Schools

When my son was about 4, he attended school for a few hours each day, together with his “shadow teacher”(home therapist). His school was a big neighbourhood school and in the UK, they termed it as reception class (like a kindergarten). The “shadow teacher” was like a facilitator in class (like an assistant), to ensure that the child stays on task or to facilitate the social aspects of the child’s development. It was not meant to be a separate or individual teaching by the “shadow teacher”. After a few hours in school, my son would return and have individual teaching done by the home therapist (ABA). They may discuss some of the things they covered academically in school and also on the social and behavioural issues they faced at school. We would also have indoor and outdoor play.

As such, everyday, my son had a combination of therapies on communication (speech and language), cognition, behaviour and social skills, as well as motor skills (occupational therapy).

10.  Stress and Relaxation Time

When we first found out about our son’s condition, we faced a lot of stress about what to do, how to finance the programme and what the future for our son will be. It can be a never ending cycle of worry. Speaking from experience, worrying too far ahead will not help your situation. The important thing is to first get a proper diagnosis and work on early intervention. The more that is done earlier, the less you have to worry as the child grows older. As mentioned earlier, having intensive early intervention is key to helping your child. From my own experience, it was sometimes really hard to leave the kids and have some time of my own, to do the things I enjoy. Whilst living in London, I did not really have any family support nor close family friends living nearby to leave my children with. This lack of personal support can be very  daunting and tiring. Fortunately, each day, I had some respite from the tutors running the programme with my son, or whenever my kids were in school. Also, we brought our children to Sunday school, to give them opportunities to mix with other children as well.

I also found the strain of constantly thinking of other possible programmes and preparing materials for the programme, sometimes overwhelming. Whenever I could, I would source materials from magazines, books or dvds. Otherwise, I would browse special needs catalogues, and educational materials shops in Canada or the UK to get some ideas. Occasionally, I would get certain items on line. These materials of course were not cheap and also put additional strain on the finances. Financially speaking, we were stretched to the limit. Although my husband was working as a banker, the expenses were high because of the various therapies and consultations. It was difficult for me to do any other courses myself or to do any work outside. My whole life seemed consumed with taking care of the home, ferrying the kids around, ensuring that the programmes were running smoothly. Sometimes, it felt like a prison which I could not break free. Yet, when we saw the progress made by my son, each little step was such a boon to us, a joy that was worth every cent and effort put in. Those little moments were treasured times to be cherished.

11.  Exposure to the Outside World

Like any child, my son also had his tantrums, and compounded with behavioural issues, could sometimes make an outing a challenging affair. Sensitive to loud noises, he would sometimes run off before you could blink your eye, or occasionally, tell a stranger in a bus to get up from his seat, so that he could sit down. Yes, it could be embarrassing sometimes, but if you explain to people, they are usually quite understanding, and would not make any comments. So far, I have yet to come across anyone who had been rude to me or my son because of something he did. The important thing is you must not cower or react negatively to your child because of his behaviour. By exposing my son as much as possible to the outside world, we taught him invaluable lessons about what was or was not appropriate behaviour, how to react in certain situations, and also help him to experience reality. If we kept our children cooped up at home, because we wanted to avoid embarrassment, or mistakably think that would help them, sadly, it would probably have the opposite effect. We will send the signal to the child that to be safe, he will always have to stay at home, or that there is something wrong with him so he should not go out.

Whenever my son acted up when we were outside home, it was quite natural to want to tell him off. I tried my best to keep him calm, and to distract or encourage him. My psychologists always advised us to reinforce appropriate behaviour, and ignore the inappropriate behaviour (unless it caused a danger to himself or to someone else). My son would sometimes test my patience by behaving badly. We were advised by our psychologists to ignore it until he behaved properly and then reward him with attention and praise. Praising good, appropriate behaviours was something we tried to do as often as possible. We definitely noticed a change from doing this.

12.  Doing Outdoor Exercises

Whilst living in Indonesia, there were not many opportunities to go to outdoor playgrounds. About 10 years ago, in Singapore, there were mainly small playgrounds in the suburban estates and a few larger ones, like the one in Pasir Ris Park. Nowadays, it is gratifying to see more parks with climbing frames and pyramids, and swings in Singapore. The huge pyramid shaped climbing frames and smaller rock walls, are ideal for dexterity, motor planning and coordination.

In London, we took every opportunity to explore the different playgrounds at various parks and gardens. All in, there were about 8 parks around London which we frequented. The interesting thing was that every one of them had somewhat different concepts and equipment. Although we lived in West London, we had access to quite a number of parks and recreation grounds. Some had obstacle courses, others had wooden ship structures, and yet others, various monkey bars and tunnels. My husband and I would also often take the boys out to play frisbee, catch and football. We also taught them cycling and batting. As far as possible, I would take the children out everyday. My boys enjoyed trying them all, and these outdoor activities definitely improved my sons’ motor skills and hand/eye coordination. Having healthy outdoor activities like these not only improve my son’s physical conditioning, but also his speech and language skills. According to our occupational therapist for sensory integration and praxis, at Hopscotch Children’s Therapy Centre in London, motor planning, balancing and coordination activities, can help with his dyspraxia and also with his oral communication skills.

Research has shown that free play can positively promote and develop the children’s overall well being physically, socially, emotionally and cognitively. (Grahn et al., 1997; Boldeman, 2001; Boldeman et al., 2004; Söderström et al., 2004. There has also been research linking physical activity in children with the development of sensory-motor integration (Williams, undated, in Burdette & Whitaker, 2005). 

13.  Exposure to Foods and Places

Kids with autism can be very picky eaters. In fact, I think even typical kids can be too. But what exacerbates the issue is that an autistic child can be especially sensitive to taste, smell, colour, temperature or textures. So, meal times can be very stressful affairs, to say the least. That is why, it is so important to teach them when they are young, to eat whatever is being served. It took us a long time to inculcate this habit, after much effort by both the tutor and ourselves. But finally, we accomplished what seemed the impossible! When my son was around 4-5 years, he was extremely picky. But then, so was my younger son. I was so tired, trying to make different foods that they could eat. Making different meals for different family members was just not tenable in the long run. Finally,  Dr Kevin Conallen suggested a food programme. Fortunately, I had a very good tutor who was adamant to crack this eating problem. After much effort and giving many positive reinforcements, even in the school canteen, we finally managed to get Jordan to try different foods. It was really hard to start with as my son used to cause a huge racket in the school canteen. But my tutor perservered. She instilled in him the notion that it was important to try something at least once. Even if he did not like it the first time, we would consistently put the food out for him to try again. It is important not to expect immediate changes. Sometimes, after a few tries, my son would suddenly decide he liked the food after all! Of course, it takes a lot of persistence and patience, to see any success come out it. However, the ability to eat different things really helps when we travel, and makes our lives much easier. So, for all families with fussy eaters,  I would persevere and you will reap the rewards later!

I also did  the Sunderland test on casein and gluten, to see if it would make the difference. In our case, the test was inconclusive, and so we did not strictly adhere to a gluten and casein free diet. We did try to cut down on gluten, mainly because my son would sometimes be constipated, when he ate too much gluten. Nevertheless, we felt that moderation in the diet was key to healthy growth and development.

13)       Be Positive and have High Expectations

It is important as parents to have a positive mindset and have high expectations for your children. This will help colour how you feel about your child and also transmit to how your child would feel about himself/herself. Our children already face many hurdles in their lives, and sometimes, prejudice and bullying by others. As such, they need constant encouragement and support, as they may have low confidence and poor self-esteem. If you see appropriate behaviours, reinforce him/her by praising his behaviour and rewarding with physical contact or something materials which reinforces him/her. This will incentivise and motivate the child to do better. Try and phrase everything in a positive way, rather than in a negative way, even when trying to change a behaviour.

As a parent, I felt that it really helped my son to give him unconditional love and support that he so needed. Up to this day, I would always tell him how proud I am of his achievements, no matter how small, and that he has done well. When people are unkind to him, I would tell him that none of us, can be popular and liked by everyone. It was just important that he has self-confidence and self-belief. When I believe in my son, he also starts to believe in himself. I have to constantly encourage him, especially when he faces new challenges and circumstances in his life.

14)       Patience

Dealing with children with autism requires a lot of patience. It is important as parents not to make comparisons and belittle the efforts of children with autism, who often have low self-esteem and confidence. My son, would sometimes, show his frustration for not being quick enough or street smart about certain things. He would compare himself with his younger brother who does not have to study as hard to get good results. It is vital to strike a balance in giving both children due attention, and not focus on one, in particular. I try to praise both of them whenever I can, as I realised that quite often, I could sometimes overlook one of the children in my praise of the other. This can create an unhealthy relationship between the children.

When my son was younger, whenever I wanted to change a habit or behaviour of his, it would take me a few weeks before he would settle into the new routine or change his behaviour. My psychologist would advise me to stick with it, even if it escalated into tantrums by my son. The important thing I had learned from this was perseverance and a firm resolve pays off. Invariably, it always worked, when I stuck with my goal and did not give up. It would require a lot of patience and strength to not give in.

15        What is Next?

I am very proud of my son and how far he has progressed. It has been the culmination of many hands; psychologists, therapists and teachers. Since coming back to Singapore, my son had the privilege of working with the many wonderful teachers, staff and students at Pathlight School, and also the youths at church who welcomed and included my son in their circle of friends. Today, we continue to support his endeavours and interests, whatever they may be.

Currently, in running my Montessori kindergarten, I do see a few children with ASD and other learning disabilities. In a normal school setting, a non-compliant child with ASD will be lost, even if the programme is child-centred. There would be a need for more personalised one-to –one or small group intensive work in order to log in sustainable progress. This can be done in conjunction with integration with the wider group. 

A key issue would be compliance. Without compliance to instruction, it would be difficult for a child with ASD to learn. The areas of concern would of course be cost and how to make it as affordable as possible for parents to access the intervention strategies within a kindergarten/childcare setting. More government funding in this respect would be helpful, both for preschools and all families with children of special needs. This would be an early investment to ensure that these children can learn to be more independent and hopefully, be productive economically in the future.

I hope that the my insights will inspire parents not to give up on their children. It is not an easy road,and financial constraints can make it tough for families to sometimes even consider the therapies I embarked on. I hope that more can be done to help families to overcome these hurdles, so that some of these precious children, will have the chance to lead independent lives.

References:

Alessandri, M., Thorp, D., Mundy, P., & Tuchman, R. F. (2005). Can we cure autism? From outcome to intervention. Revista de Neurologia, 40, S131–S136.

Boldemann, C., Blennow, M., Dal, H., Mårtensson, F., Raustorp, A., Yuen, K., & Wester, U. (2006). Impact of preschool environment upon children's physical activity and sun exposure. Preventive medicine, 42(4), 301-308.

Burdette, H. L., & Whitaker, R. C. (2005). Resurrecting free play in young children: looking beyond fitness and fatness to attention, affiliation, and affect. Archives of pediatrics & adolescent medicine, 159(1), 46-50.

Characteristics of Children with Autism Spectrum Disorders (2010)

W.L. Heward - https://www.education.com/reference/article/children-autism-spectrum-disorders/

Healy, O., & Lydon, S. (2013). Early intensive behavioural intervention in autism spectrum disorders. In Recent Advances in Autism Spectrum Disorders-Volume I. InTech.

Reed, P., Osborne, L. A., & Corness, M. (2007). The real-world effectiveness of early teaching interventions for children with autism spectrum disorder. Exceptional children, 73(4), 417-433.

Speaks, A. (2011). What is autism. Retrieved on November, 17, 2011.

Warren, Z., McPheeters, M. L., Sathe, N., Foss-Feig, J. H., Glasser, A., & Veenstra-VanderWeele, J. (2011). A systematic review of early intensive intervention for autism spectrum disorders. Pediatrics, 127(5), e1303-e1311.