What we can do for autistic Singaporeans

Kelvin Teo

Flickr photo courtesy of Norma Desmond

Aaron Kok, a pseudonym shares the experiences of his and other fellow autistic friends as they came face to face with the realities of life in Singapore in an article published in The New Nation. From the damning tone of Kok’s writing, it is apparent that autistics face a harsh reality in Singapore as the latter negotiates the education system, national service, and subsequently, working life.

What exactly is autism, or put more accurately, how can you tell if a person is autistic? The American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders Fourth edition (DSM IV) has a series of criteria for diagnosing an autistic – 1) Impairment in social interaction 2) impairments in communication 3) restricted repetitive and stereotyped patterns of behavior, interests and activities. Of course, under these three conditions, are a series of sub-criteria, but yeah, readers can basically gain a gist of what constitutes autism.

Kok, as he admitted in the article suffers from Asperger syndrome. Asperger syndrome is similar to autism in terms of signs and causes. Autistics and those with Asperger syndrome encounter difficulties in social interaction, and restricted and repetitive patterns of behaviour and interests. If you observe a child who incessantly talks about planetary orbits even in the most mundane of situations, and in a repeated fashion oblivious to the intended topic of interaction, chances are that you could be dealing with a case of Asperger syndrome; pursuit of narrow areas of interest is one of the hallmarks.

The answer to the question of what can be done for autistic Singaporeans is a multi-factorial one. A major barrier is the degree of social stigma attached to the condition of mental illness. Serfaty and colleagues from the Royal Free and University College Medical School, London, defined stigma as a social construction that defines people in terms of a distinguishing characteristic or marks and devalues the latter as a consequence. Thus, a stigmatised person is not seen as normal. And research has indicated that the stigma associated with a mental disorder is pervasive. In a study that involved interviews with 29 personnel with mental disorders, the latter spoke a great deal on personal harassment verbally, personally or via other forms of actions such as property damage.

‘The whole street — they set dogs on me. I’d go in the shops and the children would come and spit on me and stuff like that.’ (African—Caribbean female respondent, 41, bipolar affective disorder)

From the same research, respondents have also indicated that people around them have stopped contact with the latter because of their illness.

‘I’ve had moments when I was talking to someone quite happily, mentioned the sheer fact that I suffer from mental health problems and I turned to talk to someone else and their back turned, they’re heading for the door literally.’ (African—Caribbean male, 33, schizophrenia)

Others’ experiences of stigma were closer to home and familial. In another separate study on chinese patients from Hong Kong, respondents indicated that they have experienced stigma from family members on a frequent basis and majority received negative remarks when symptomatic episodes of their mental disorders relapsed.

‘My mother told our neighbours that I was one of her relatives, not her daughter. I was upset in the past when she first treated me like that, but now I’m used to it’ (28-year-old chinese female respondent with a history of schizophrenia).

The pertinent question is how we can tackle the issue of social stigma, specifically what approaches we can adopt in order to at least reduce it to the minimum? Negative perspectives on mental disorders may be deep-rooted and can be entrenched within the culture of that particular society, which poses a difficult problem. One possible strategy to tackle the issue of stigma lies in education. One study was carried out in southern England in the county of Kent in which a double-phase educational workshop was conducted in participating schools. During the first phase, a mental health awareness workshop was conducted by a facilitator who worked in the field of the mental health. Phase one comprises two sessions; the first hour-long session concentrated on facilitating the students’ understanding of mental health and mental illness, and this included viewing of a video of people living with schizophrenia and depression. Phase 2 of the project involved another co-facilitator with experiences in living with individuals with mental health problems, and it involved a revisit of phase 1’s lessons plans, albeit with personal experiences thrown in.

The results were encouraging. A quarter of the pupils who participated used sensitive descriptions on counterparts with mental disorders focusing on the latter’s emotions and positive characteristics.

“I would call them different but I wouldn’t mind it. I would just feel strange, I definitely wouldn’t say anything to hurt them or make them feel worse than they already are.”

“I wouldn’t call them anything because it can mean all sorts of different problems.”

“Mental illnesses are problems that they might not think they can overcome.”

- A sample of the descriptions given by pupils

Such educational workshops were shown to have a small, but positive impact on how pupils view individuals with mental disorders. When participants were asked during the workshop to find less stigmatising terminologies to describe the experiences of individuals with mental disorders, majority of the pupils focused on the former’s feelings e.g. sad, dazed, lonely, scared, normal. The success from the British project indicates to us that educational interventions through workshops that promote awareness of mental illnesses and the issues faced by its sufferers could be worth exploring. It is definitely worthwhile to consider organising workshops or campaigns in our schools in order to nurture a future generation who are sensitive to issues and needs of individuals with mental disorders.

The other avenue of improvement in care for our autistic counterparts and others with mental disorders comes from within the medical circles. Singapore’s Health Minister Khaw Boon Wan made the observation that in the past, hospitals used to focus on treating patients right up to their discharge, but upon his repeated urging to extend the care to patients beyond discharge, the hospitals’ mission changed with the latter looking into ways on how to care for discharged patients. Khaw has a good point, especially on the need to continue caring for the patient once the latter leaves the hospital. My experience of the practices of major tertiary referral centres (a medical centre of the stature of Singapore General Hospital, Tan Tock Seng Hospital) in Australia was an eye-opener, and it is something that we can consider adopting into our practice. Prior to the patient’s discharge, the consultant in charge of the patient’s care will convene a meeting involving not only the medical team in charge of the patient’s care, but also other members of the Allied Health team, e.g. occupational therapists, physiotherapists, dieticians, pharmacists, speech therapists (if relevant), psychologist (if relevant) and last but not least, the social worker. The topic of discussion will be the patient’s day to day living at home or in a nursing home for that matter, and for those patients who are currently employed, any alternative arrangements that can be made if he is on long-term MC (this aspect is overseen by the social worker).

The same model of care can be applied to patients with mental disorders. When the patient comes in for an appointment and the latter is diagnosed with a mental disorder, the team in charge of his care will be concerned with what is next? And that is where the care for such patients can be coordinated on the day he leaves his hospital, and the following needs have to be addressed – 1) How can his day to day needs be addressed? 2) How can we equip the patient’s carer with the necessary know how to address his needs? 3) What other alternative career or educational arrangements are there if the patient runs into problems?

Point 2 on the carer is especially important. For children with mental disorders, carers will usually be the parents, siblings or relatives. For older patients, it could be their children or a younger relative. Carers have a quintessential role in the patient’s progress, and hence they need to be equipped with the skills to care for the patients, like how to react when the mental disorder flares up or adopt a therapeutic approach that will lead to an improvement in the patient’s mental health.

Another approach which I observed and worth mentioning is the due attention that the consultants pay to the referral process, and in this case, the primary care physician, or our good old family doctor. When the patient leaves the hospital, the consultant would record verbally a description of the patient’s medical history and treatment, and the required follow-up that the primary care physicians should adopt, and save his voice recording in a file within the voice recorder. This file is then passed on the primary care physician. Thus, with a reliable referral system, the family doctor caring for the patient with mental disorder will be able to follow up on his case and provide the necessary care.

The final avenue of improvement that will benefit individuals with mental health disorders comes within the legal circles. Kok wrote of the experiences with autistics being bullied and harassed when serving national service. In order to deter such blatant acts of bullying, there is perhaps a need to enact laws prohibiting discrimination and harassment of individuals with mental disorders. It is similar to the Americans with Disabilities Act of 1990 that prohibits discrimination of the disabled. However, one would suspect that reference to people with mental disorders as ‘disabled’ has its own fair share of baggage involved; there are individuals with such disorders who go on to be leading lights in their field. However, the point is that criminalisation of discrimination against individuals with mental disorders will at least go some way in ensuring that the latter would not be discriminated against and will have access to educational and career opportunities at the very least.

Our counterparts with autism, and by the extension, mental disorders in the broad sense, could thrive better in an environment that understands, supports and protects them. Such can be achieved through innovative approaches and changes within the education, medical and legal circles. After all, it is true that all is not lost when a person was found to possess a particular mental disorder. We learn through biographies of famous personalities – many of whom made contributions in their respective fields – that they suffered from a mental disorder such as Asperger syndrome or schizophrenia. We are told through media sources that Einstein and Newton could have suffered from Asperger syndrome. And if we recall the scenes of the moving Hollywood production A Beautiful Mind that revolves around the life of economics Nobel Laureate John Nash, it is a haunting reminder of the suffering Nash went through during the periods of schizophrenia but yet, we cannot help but marvel at the dazzling heights of the man’s intellectual achievements.