Never A Dull Moment
Alfred is now twenty-four, an adult with Autistic Spectrum Disorder. Unfortunately, we did not know about his condition until he was nearly eight years old. His birth was much anticipated – he was the first male grandchild of the family which is very important for a Chinese family – and the whole family was overjoyed with his arrival! As such, he was adored and treated like a prince.
There was nothing unusual or alarming about him in the initial years as he reached all developmental milestones on time. Any out of ordinary behaviors were attributed to him being the “spoiled” child or later billed as just a “difficult” child. In fact, I had never heard of the word “autism” until I saw the movie Rainman, and the movie did not even trigger any association of Alfred being like Rainman at all!
Then, as he started kindergarten, the more experienced teachers noted that he was “different.” We began to seek help from various experts, including developmental doctors, psychologists, and psychiatrists, and also from various organizations with a special interest in children with problems. Autism was not that well-known or researched in Hong Kong in the early 90s. He was a puzzle to most professionals in Hong Kong at the time as he did not have all of the “classical features” of autism (he has no self-stimulating behavior, no obsession, no difficulty with language, and good eye contact), and no one was willing to actually label him. He was not diagnosed as autistic until he was eight. By that time, as we all know now, it was already late for early intervention.
For us, the years after his diagnosis consisted of the usual parent disbelief and the constant search for “cures.” We visited all of the better-known public and private psychologists we could find in Hong Kong, and Alfred was on a very intensive program of speech therapy and sensory integration. We had him join any activity which might promote his development: music therapy, play therapy, art therapy, family counseling, etc. He even joined a social group with poorly matched groupmates!
Services were not readily available then, even in the private sector, and at that time, we had to make do with what we could get! We were fortunate in that our family could afford the hefty price of private services instead of waiting much longer for the more affordable government services. I know that some families had to wait years for a consultation or several months for a session of speech therapy.
Like most desperate parents back then, we also tried many of the so-called “miracle cures.” Alfred tried Auditory Integration Training (AIT) twice, prism lenses, megavitamin/DMG treatment, Chinese tongue acupuncture, secretin, etc., but these didn’t work for him. I believe that governments around the world should put more money into doing research on autism to help desperate parents from falling into the trap of trying things that are not well documented and are even sometimes dangerous. I hope that more research on autism can be conducted especially in the areas of early detection or screening prior to birth. Apart from that, more biomedical research on how to help the existing autistic population should be a priority.
After our search for miracle cures, we decided to go back to basics. We heard about behaviour treatment programs in the U.S. and managed to get referred to an L.A.-based psychologist in private practice to start a Lovaas-type of ABA program for Alfred in Hong Kong. Although early intervention is best, and in Alfred’s case it was a bit late, we were told that it was better late than never. I believe that we were one of the first few families to have initiated this type of program in Hong Kong. It meant a lot of work and money and of course a lot of stress, and it took a big toll on our family life. We had to advertise for and recruit therapists. Way back then in the early 90s, there was no internet, and I had to actually place an advertisement in the newspaper and have people call me up and let them know what this was all about before interested parties faxed their resumes to me. People were shortlisted and interviewed in person, after which a group of potential therapists were asked to attend a week of training workshops which I organized and which were conducted by a U.S. psychologist. He selected promising therapists who we then recruited to work for us. The recruits were mostly either students or people with daytime jobs, and turnover was fast. We had to initiate a big recruitment process almost every year. This went on for many years and we followed this routine and the program diligently, bringing the U.S. psychologist here to Hong Kong to check on progress at least once or twice a year.
It was terribly expensive for us but we were glad to note improvement in all areas, especially behavior. After a few more years, we seemed to have reached a dead end as Alfred had completed nearly all parts of the program. Because he started the intervention program “late” in life when he had already acquired a number of skills and because he was rather high functioning, it was inevitable that the program would gradually seemed to have served its purpose.
I had attended a TEACCH training course in Chapel Hill, North Carolina (US) as a parent, and came to know Dr. Gary Mesibov. I urged him to help us set up a TEACCH home training program in Hong Kong. This came into fruition as he brought five of his colleagues to Hong Kong to set it up. They also helped us to recruit a TEACCH supervisor from Chapel Hill to be stationed in Hong Kong to overlook what we were doing. Unfortunately for us, the supervisor left after less than a year in Hong Kong due to the 2003 SARS epidemic and our program lost the supervision it needed to carry on. After that we were doing things pretty much all on our own.
Therapy aside, schooling, as one could imagine, was also a big problem. Alfred entered a mainstream primary school after kindergarten. It was an elite local school and students were expected to be ready for the quizzes and tests from Day One, rather than still being inattentive, unfocused and with behavior problems. It was nightmarish for me. I jump every time I hear the phone ring with “bad news” about Alfred. Though the school was still tolerant, I could not take the stress.
We then enrolled him into a private English speaking school with a special needs unit. It seemed to provide just what we wanted – he would be placed in the special unit with special teachers and aides whenever the mainstream curriculum or environment got too tough for him but would be shadowed in the mainstream class whenever he could manage. In reality, it did not turn out quite this way. Due to lack of manpower, Alfred was actually in the special unit most of the time. Then even the special unit did not try its best to help him. Most of the time, Alfred was timed out for bad behavior. I didn’t think it was a good solution, as being autistic he would obviously prefer to be on his own! The school didn’t know how to manage him afterwards and told us to home school him for a while until he got “better.” I objected to home schooling as I felt it was important for Alfred, being autistic, to have a peer group.
We were fortunate enough then to find an international school with no special needs unit but willing to take him with our agreement to employ our own teacher to shadow him. The ensuing years were not without its ups and downs of course with behavior problems still surfacing but Alfred was pretty much happy there at school. His “shadow teacher” managed to coax some of his classmates to chat and socialize with him both in and out of school which was great!
As he approached the higher grades, I noticed that interaction between Alfred and his peers was less frequent as they had all grown up and their interests differed from that of Alfred’s which had remained the same. I also felt that it was unrealistic for us to have hopes of him being able to go to university with a “shadow.” We then enrolled him into a local Vocational Training Centre (VTC) for work training. This was a government training centre and regulations were strict so “shadows” were not allowed. For the first time in his life he was on his own without any kind of “shadow.” Fortunately, we never stopped Alfred’s Chinese lessons even though he was in an English speaking school, and now this came in handy as the VTC only teaches in Chinese and everything is written in Chinese. He took up training as an Office Assistant which he found easy as his English skills are good and he had actually been trained in office tasks at home. His typing/computer skills are good and at the VTC he even learned how to type in Chinese. It is government regulation that a person can only stay at the VTC for two years, so after that Alfred spent another two years (also government regulation) at the same location for supported work. They did not have work for him as an office assistant and most of the time he had to do any kind of work they were given for the day, mainly packaging. After those two years, he had to leave the VTC, to go either for open employment, workshop or to Daily Activities Centres, either government or non-government agencies.
Open employment was unrealistic. Even normal people have a hard time finding jobs in Hong Kong during times of financial difficulty, so it was nearly impossible for Alfred to find employment. Even those with other types of disability would have fared better than an autistic person with strange obsessions and self-stimulating behaviors.
I explored workshops and visited all within the vicinity of our home but found them dismal and disheartening. We then decided to let Alfred join a day centre. It was a private English speaking non-government centre for special needs, and Alfred liked it. They knew he possessed good computer skills and let him take private computer lessons and tests afterwards with which he was awarded certificates. It gave both Alfred and us great satisfaction, but again, realistically, certificates do not mean you will get a job. The centre also provided the opportunity for work placements with job coach “shadowing.” He had two jobs at one stage, each lasting only half a day once per week, but he seemed to enjoy them both tremendously.
The past two to three years have been extremely trying for our family. Alfred has developed an anxiety problem, and at one point even became aggressive. He used to be very compliant but now he wants to take charge of everything. Whereas he used to be calm, he is now relentlessly obsessive. He has even developed an irritating tic, which has made it increasingly difficult to take him out. For the majority of his life, Alfred has been fortunate enough not to have to rely on medication. But as things have changed, he is now consulting a psychiatrist and is on regular medication. The aggressive behavior stopped but the medication made him dull and drowsy, so much so that most mornings he was unable to get up on time to go the centre. His work placements came to a halt.
As parents, we get to love and also hate medication – love as it gives relief and hate because of its bad side effects. It is sometimes disheartening to see our lovely child turn into a person we’re not used to seeing – go wild like a horse or dull like a wounded beast. No matter what, we have to learn to live with it, always hopeful that all things/cycles, however long, must pass, and that as things change so will the medication and his response to it.
Life is not life without its ups and downs – and ours with an autistic individual is particularly colorful and eventful, to say the least! As I am a “senior” parent, both in terms of age and experience in raising an autistic child/adolescent/adult, though not necessarily in knowledge and ability, I have been through the few ups and also the many downs, many cycles of them. In the early days, we found great difficulty in breaking the shocking news of Alfred’s condition to the family and in responding to friends’ questions about Alfred and where he is studying, etc. We have since progressed to a point at which we are including him in all holidays and outings (locally or around the world) involving the whole family and telling people frankly and directly what he is doing and how he is faring. We came across some people who found us desperate parents easy targets to take advantage of, but we crossed paths with many others still who were willing wholeheartedly to help with meager monetary payment or sometimes without seeking any return at all.
Initially when Alfred was very young, I encountered a lot of people who looked upon us with fear and disdain as they couldn’t understand how these regular-looking people could be “special” and how we parents could not teach them properly and let them behave so terribly. I am glad that as the years have passed, this attitude has changed a lot in Hong Kong due to knowledge. People are more educated now and they know that it is not the parents’ fault. The media has helped by doing more special reports on autism and we now even have movies or TV series featuring autistic persons, and awareness of this disorder has increased. People are now more tolerant, genuinely sympathetic and helpful if you tell them frankly your problem. Sympathy aside, I hope the general public will in their own way support the social enterprises involving special needs individuals that have grown recently in Hong Kong. People can help by using the social enterprises’ services as patrons, offering them reasonable rents as landlords, or offering to do joint-ventures with them as investors/corporations. Only by lending them a hand can the general public enable more autistic individuals with ability to contribute their own share to society instead of being a burden to society.
I can see Alfred’s positive influence on all of us: Grandma’s attitude of non-acceptance to one of complete support; his brother’s friends were all exposed to Alfred from a young age when they came to our house for gatherings with Alfred mingling amongst them and as a result their awareness of this disability is high as they practically grew up together; our friends making it a point to include Alfred in all of their invitations and specially ordering food that Alfred likes… Alfred’s presence has certainly changed my life in many ways. I may not have been a full-time housewife and mother if not for him and I have since (hopefully) become a more down-to-earth, open-minded, patient, flexible and persistent person. I do fail, but I don’t give up easily and don’t mind retrying. I no longer ask the question: “Why us?” I believe that Alfred’s life is meaningful – perhaps it’s to contain my often flaring temper or teach me a lesson in humility; or to have more people take advantage of the interventions we have helped to bring into Hong Kong; for him to make friends with other autistic individuals and then for us parents to get to know and to bond with each other in so many special ways; or simply to reinforce the belief that there are still a lot of people with heart, dedication and commitment in this world…
As a mother I have to be strong for everybody in the family, to maintain a positive attitude and keep my sanity in order to support the whole family through this crisis which is not going to go away. It is not easy for the father to have to cope with his work problems during the daytime only to return to the noisy and constant battlefield-like environment of home. The sibling might be subjected to the sometimes unimaginably obnoxious behaviors of his “special” sibling and also receive less attention from the parents. Life has to go on whether you like it or not and so keeping good sense of humor is important. We also have to strike a good balance between work and recreation. Knowing when one needs to take a break and relax is important. Most parents find talking to their friends or sharing their woes with other parents especially helpful. As for me, I also find writing helpful. I love writing emails to friends to pour out my “sorrows.” I do feel better each time after writing even before receiving my friends’ replies! I did not have the patience or time to do much writing before I had Alfred but now because of him I am keeping up correspondence and friendships with my friends!
As a parent my hope for him is simple: to be able to lead a happy and useful life. It doesn’t matter if he cannot get a regular job like an ordinary person and earn money. Actually I hope he will be able to do some voluntary charity work serving others in ways he is able. For example, since he is able-bodied and strong, he can certainly help with heavy work, paint jobs, sorting clothes and food, and cleaning work. He can read and sing and so can certainly help visit the elderly or young kids in hospitals or in homes. No organization has yet taken my offer seriously! My next target would be to find a suitable residential facility for him for when we’re not around, whenever that day comes. If we want a government facility it will mean years on the waiting list. It is best to do research and have things well considered before then. As we are getting older, this is becoming more imminent and we certainly don’t want this burden to fall suddenly upon his younger brother’s shoulders. In recent years, Hong Kong has progressed in that more and better facilities for young autistic children are available which is very positive indeed as early intervention is known to work for the young ones. However, as the population ages, Hong Kong certainly needs more facilities specially catered to the needs of autistic adolescents and adults. As they are a unique group of people with unique needs, the opening of day centres, supported work placements and residential facilities servicing only autistic individuals should be urgently implemented. If this could be achieved during our lifetime it would indeed be a big relief to all of us!
The views expressed in this paper are those of the author(s) and do not necessarily represent the views of the NLM Family Foundation.