J.H.K.C. Psych. (1993) 3, Spl, 8-12

ORIGINAL PAPER

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INTRODUCTION

Autism is a 'pervasive developmental disorder' mani­ fested before the age of three years, and is characterized by impaired social interaction, abnormal functioning in communi­ cation, and restricted and repetitive behaviours ICD 10).

In Hong Kong, the 1983 Working Party on Preschool Care, Education & Training of Disabled Children (WOPSCET, 1983) recommended that 'the diagnosis and early management of autistic children was within the domain of psychiatry '. It was further rec­ommended that more hospital classes should be set up. All autistic children were recommended to receive at least six months of initial intensive treatment in these hospital classes and be ready for school before they were transferred to pre­ school or school settings. However, the development of hospi tal classes fell short of demand. In contrast, developments for special educational services among the Social Services sector were rapid. There are now more and more child care centers (integrated and specialized) as well as early education training centers. Autistic children are often admitted to these child care centers without going through hospital classes.

Furthermore, it is now recognized that autism is a develop­ mental disorder, most likely with underlying organic causes, and there are no curative treatments available yet Paediairi­ cians are showing more interests in the condition. Among the mental health professionals, other members of the team have devoted a lot of time and interest in these children. Clinical psychologists, occupational therapists, nurses, teachers and parents often know these children well. However, psychiatrists with their team of multidisciplinary staff are particularly equipped to serve this group of children and their families. Educated as doctors, psychiatrists are well versed with physical disorders associated with autism. Trained as psychiatrists, they are skillful in the detection of psychopathology. They are also trained in psychological treatment and have a good knowledge of child development. Psychiatrists are therefore in a good position to lead the multidisciplinary team in the management of autistic children. Over the years, they have provided good quality service to autistic children and their families and have gained experiences and knowledge about the condition. However, the changing scene of service provision in the non­ psychiatric setting will affect such a service. It is time to re­ evaluate their role in the service provision for autistic persons. In order to do that, it is useful to clarify in the outset the concept of autism.

CONCEPT OF AUTISM

Autism is best conceptualized as a group of behaviourally defined developmental disorders (Gilluct, 1990). Like other psychiatric disorders, in the absence of any biological marker, diagnosis has to rely on clinical judgment. Any definition, op­ eration criteria, rating scale or checklist could only validate itself against the standard of clinical diagnosis.

In 1943, Leo Kanner first described the syndrome of early infantile autism. These children exhibited an apparently con­ genital inability to relate to other people (in contrast to an ap­ parent ability to relate to objects); their language (when it de­ veloped at all) was remarkable for echolalia, pronoun reversal and concreteness. Behaviourally tl1ese children engaged in re­ petitive, apparently purposeless activities (stereotypy). They were highly responsive to the inanimate environment, and were intolerant of change.

Apart from some speculations (social class bias, intelligence and abnormal parenting), his description remained remarkably accurate. Whether Kanner had discovered or invented the condition, time only will tell. Subsequent definitions are basi­ cally refinements of Kanner's original thesis, e.g. Rutter (1972), DSM III, DSM III-R & ICD 10. These definitions are not iden­ tical but they overlap to a large extent. Despite controversies over the diagnostic criteria, measurements, boundaries, uncer­ tainties of etiology and treatment, Kanner's concept of autism has remained remarkably stable. "Among all the psychi­ atric syndrome arising in childhood, autism is much the best validated by empirical research" (Rutter & Schopler ,1987).

However five main areas of controversy remain with re­ spect to the boundaries of autism as a valid diagnostic entity :

(1) autistic-like syndromes in children with severe mental handicap;
(2) autistic-like disorders in individuals of normal intelligence without gross developmental delay, general or specific;
(3) later-onset autistic-like disorders following a prolonged period of normal development;
(4) severe disorders arising in early or middle childhood characterized by grossly bizarre behaviour; and
(5) the overlap between autism and severe developmental disorders of receptive language (Rutter, 1988).

Clinically the most frequent diagnostic problem concerns the closely related group of disorders, variously named as atypical autism (Rutter, 1989), the triad of social, language and behavioural impairment {Wing, 1979), the autistic continuum (Wing, 1987), autistic spectrum disorder (Gilberg, 1990), Per­ vasive Developmental Disorder NOS (DSM III-R), autistic psy­ chopathy or Asperger syndrome (Asperger, 1944), schizoid personality disorder of childhood (Chick & Wolfs, 1980), Rett's syndrome, Heller's syndrome and disintegrative psychosis, etc. 1l1ese tend to describe children who have similar handicaps but fell short of meeting the full criteria of autism.

Controversies remain as to the distinctness of these syn­ dromes and how they relate to each other. Wing (1987) and Gilberg (1990) proposed that these disorders actually lie in a continuum along the different dimensions of impairment. The distinction of Kanner's autism and the non-Kanner groups are neither meaningful in terms of its biological or psychosocial background, nor in terms of treatment needs. They appear to suffer from the same impairment of different severity and re­ quire the same sort of psycho-educational packages.

Wing advocated that "whether or not a child fits the picture of typical autism will depend upon the se­ verity of the social impairment and the degree and kind of brain dysfunction in other areas". Thus, if a child is aloof and indifferent to people, at least in his early years, and has marked impairment of language skills, but his visuo-spatial abilities are less damaged, he will merit the diagnosis of autism. If he is severely impaired socially and all his other skills are-equally damaged, he will be diagnosed as profoundly physically and mentally handicapped and the 'autism' will be one more problem on top of the rest. If he is socially impaired but not aloof and has all or most other skills intact, he is likely to fit Asperger's (1944) description of his syndrome, and so on. Many combinations of impairments will not exactly fit any of the named 'syndromes'. The concept of a 'spectrum of autistic disorders' or the 'triad of so­ cial impairment' helps to make sense out of the confusion of clinical facts. The author indeed found this concept useful in clinical practice.

PSYCHIATRIC SERVICES IN HONG KONG FOR AUTISTIC PERSONS

As mentioned earlier, the Mental Health Service h1 Hong Kong has been providing quality psychiatric service to a large portion of autistic children and their families. With the current changing scene of non-psychiatric service provision and an in­ creased expectation among the public, there is a need to re­ evaluate and readjust the service provision to the new demand. The following 5 areas should be covered :-

1. Diagnosis, continuous assessment and treatment.
2. Home based training programme.
3. Back up and booster services for other services provider.
4. Support and resource center for their families.
5. Policy adviser.

DIAGNOSIS, ASSESSMENT & TREATMENT

At present, Hong Kong has a satisfactory screening services provided by the primary care doctors h1 the public and private sector and by Maternal and Child Care Centers and Child As­ sessment Centers. The Child Psychiatric Team, Kwai Chung Hospital setves as a tertiary referral center with the majority of cases of Autism referred from child assessment centers. Others were referred by general practitioners, pediatricians, teachers and educational psychologists. There is inevitably a bias to­ wards the more severe end in the children seen. The first role lies in the provision of a competent, high quality assessment and treatment service.

Initial diagnosis

The diagnosis of autism is not an easy job. A prominent British child psychiatrist once said : "you'll know it when you have seen enough of them" . 1l1is vividly demon­ strates the conceptual difficulties in autism. Diagnosis is the process of taking a detailed developmental history and obsetv­ ing the child. In the absence of any biological marker, diagno­ sis remains a subjective judgment. The flaw about it relates to the clinician's concept of autism, e.g. the diagnosis of autism in DSM III-R is broader than that in DSM III. The ICD 10 guide­ lines in diagnosing autism is as follows :

1. Qualitative impairment in reciprocal social interaction;
2. Qualitative impairment in communication;
3. Restricted repetitive and stereotyped pattern of behav­ iours, interests and activities; 
4. The developmental abno1malities must have been present in the first 3 years of life.

In line with Wing's (1987) and Gilberg's (1990) concept, fhe usual practice in Hong Kong is not to separate the 'non­ core· groups into subcategories as in ICD 10, but to call it "autistic features" (a te1m used in Hong Kong} or Perva­ sive Developmental Disorder NOS (a teim used in DSM III-R), or Atypical Autism CTCD 10). TI1e DSM III-R c1ite1ia for autism is not used because its operational c1iteria, i.e. 8 out of a list of 16 symptoms, as arbitrary. Volkmar (1988) had re­ po1ted that using the DSM III-R diagnosis for autism, the sensi­ tivity was 90.4% and the specificity was 64.5%, implying a faLc;e positive of 35.5%. 111is suppo1i:s the view that DSM III-R result in a broader conceptualization of the disorder.

Furthermore, checklists such as CARS or ABC are useful as adjuncts, but cli11ical judgment is basic in making the diag­ nosis. All other diagnoses are lumped into a group referred to as PDD NOS, autistic features or autistic spectrum disorder.

Experience shows that tl1is group tends to benefit most from early and continuous intervention. In future service planning, this 'non-core' group deserves particular attention and should nor be left unattended. In fact they should receive the same psycho-educational se1vices as the autistic 'core' group.

There is a recent trend that children of younger age are re­ ferred. Toddlers as young as 20 months were seen. Gilberg ( 1990) reported that he could make a confident diagnosis of autism in children under 3 years of age. Other than the typical autistic child, it is difficult and undesirable to make an early definitive diagnosis. Cl1ilclren are developing and the clinical picture may cl1ange over time. It is better to witl1.hold tl1e di­ agnosis and tell tl1e parents frankly about tl1e cl1ild's impair­ ment but tl1is does not imply witholdling of services.

Search for associated physical disorders

Physical disorders that could cause brain damage or dys­ function are reported to be associated witl1autism. Congenital rubella, phenyllketouria, tuberous sclerosis, encephalitis, en­ cepl1alopathy, severe perinatal complications, severe congeni­tal visual impai1ment, infantile spasm, etc. are reported to be associated witl1 autism. More recently Fragile X syndrome is also reported to be assoiated with autism. A rate of 5-16% are reported, leading some to postulate that there is an asso­ ciation between autism and Fragile X. Genetic factors other than Fragile X are also important. A tl1ird of autistic children will develop at least one epileptic fit before tl1ey reach adult­ hood. Wing (1987) rep01ied an association witl1some physical conditions that would cause brain dysfunction in 53% of autis­ tic children. The experience in Hong Kong shows tl1at tl1ere are some physical disorders in around one third of the cases. TI1e low rate could be explained eitl1er by the relative insensitiv­ ity of doctors. 9 genuine difference, or by the relative young age of the cases seen. Personal communication witl1 develop­ mental pediatrician in cl1ild assessment centers gives a similar finding, mal<lng clinical insensitivity unlikely.

Chromosome studies using folic acid deficient medium in an attempt to detect fragile X in 56 autistic children in Hong Kong yielded negative result (T.S. LAM, personal communication). The finding is contrary to fo1.clings by others. This could either be explained by a chance factor, a relative insensitivity of the culture (ratl1er unlikely), or a genuine difference in Cl1inese cl1ildren. Final cla1ification awaits further research. It is obvious tl1at careful screening for physical causes is needed in tl1e diag­ nostic process. Psychiatric teams, with its multidisciplinary in­ put is well equipped in the diagnostic process.

Continuous assessment

Diagnosing a cl1ild as suffering from autism is meai1ingful only when there are proper infom1ation conveyed, assisting in communication and getting the appropriate services. How­ ever, each cl1ilcl is unique in his strength and weaknesses. Fur­thermore children are developing and hence it is necessary to assess the autistic cl1ildren periodically. Particular important transition periods are school entrance and adolescence. Chil­ dren and parents should be adequately prepared, new prob­ lems should be anticipated and corrected before tl1ey arise and should be remedied after tl1ey !1ad occurred.

Medical treatment

At present, tl1e best available evidences suggest the impor­ tance of approp1iate educational interventions to foster acqui­ sition of basic social, communicative, and cognitive skills. A combination of bel1aviour modification coupled with knowl­ edge of developmental need of children is the best approach. 111ere is no proven curative drug treatment. A number of drugs !1as been advocated, each at best l1as claimed modest improvements in behaviour. TI1ere include folic acid, fenflu­ ramine, vitamin B6 and magnesium, oilier amino acids and vi­ tan1ins; none of w11ich are unequivocally proven to be thera­ peutically effective. Major tranquilizers, e.g. Halopeiidol could be a useful d11.1g for symptomatic treatment of disruptive behaviour.

There are recent claims of oilier forms of treatment such as sensory integration, use of auditory stimulation, holding ther­ apy etc. This is reflects tl1e enthusiasm of tl1e advocates ratl1er tl1an any !1ard fact of its efficacy. However, should parents insist on such treatment, they should be advised to make sure tl1at such procedure wowd not be l1arrnful to tl1e cl1ilcl and ilie family. 111is also includes financial and times loss and the po­ tential burden on otl1er members of the fan1ilies. However, should parents choose to proceed, doctors should remain sympatl1etic and supportive.

HOME BASED TRAINING PROGRAMME

At present, se1vices for autistic c11ilclren are predominantly clinic based. Children and tl1eir fan1ilies receive outpatient psy­ cl1iabic and clinical psychological services. Others receive an initial intensive day treatment se1vice by the multidisciplinary team followed by outpatient service. Hospital class and day treatment se1vices l1ave been exemplary in tl1e l1igh quality of services they provide. However such model l1as its shortcom­ ings.TI1ere are considerable evidence that generalization to non-tl1erapeutic settings rarely occurs witl1out special interven­ tions and tl1e gains tl1at occurare frequently lost after cessation of intensive services and returning to tl1e normal environment.

It is obvious that alternative strategy in service delivery should be considered in order to maximize, maintain and gen­ eralize the newly learned behaviours. A home based training programme as advocated by Howlin & Rutter (1987) seems attractive. It is a broad based approach, assessing and interven­ ing across the whole range of children's functioning, incorpo­ rating both developmental as well as behaviour principles.

The service is delivered in the natural environment, mainly at the child's home. Parents are involved as the primary agent with the therapist supervising them. It comprises two trained therapists paying home visits once a week during the first six months. Each visit lasts about two hours. In the follow­ ing one year, frequency of visits is reduced to twice and then once a month. Periodic booster visits are required thereafter. The programme was reported to be effective and parents gain confidence and skills in handling and teaching their children. The autistic children also gain progress in their development. However, the programme is inevitably expansive. When compared with the clinic based hospital classes, it appears to be more effective and elicit better parental satisfaction. There will be savings as it replaces some of the clinic based service and hopefully will also reduce long term dependence on the clinic.

It appears that some form of a compromise model may be suitable for Hong Kong. While the clinic based services contin­ ues, part of the assessment and training could be carried out at home by the hospital based teams. Future follow up, at least some of it, will be carried out by other team members who know the families and the child well. 111is will reduce the case load of the psychiatrists and clinical psychologists who can use the time in the supervision of the team members. Such a team could be built on the existing team of psychiatrist, clinical psy­ chologists, teachers, occupational therapists and nurses. Addi­ tion of speech therapists can have important contributions.

BACK UP BOOSTER SERVICE.S FOR OTHER SERVICE PROVIDERS

With the present rate of development in non-psychiatric service provision for autistic children, some sort of competition is inevitable, particularly for the preschool age group. To cir­ cumvent the issue, a different strategy in service provision should be adopted. Full time hospital classes can be replaced by the Child Care Centers. Instead, emphasis should be fo­ cused at remedying and supporting them. Autistic children can attend day treatment service on a sessional basis for more in­ tensive training. Close liaison have to be maintained with staff of these centers. Psychiatrists can advise them in the man­ agement of difficult children and help the training of their staff.

The school aged autistic children face similar problems. Teachers in special schools have a limited knowledge of autism. Doctors can play the dual role of supporting and training them in the management of these children. Sessional day treatment facility for school aged autistic children, and occasionally inpatient facility, should be available. Taking over the direct care of these children should be avoided. The aim is to put in an intensive but time limited period of assessment and treatment in our setting followed by implementation of the treatment programme in the school. A shift towards a more community based programme, with close liaison with special schools is required.

One final group that need mentioning is the high function­ ing autistic children. These children are often referred to us at a later age. They present with behavioural problems and learning difficulties in normal schools. There is a lack of tailor made re­ medial and supportive service for them.Venter et al (1992) reported that among those with an early verbal IQ above 70, most showed a better outcome in terms of adaptive skills, aca­ demic achievement employment and vocational placement as compared with those 15-20 years ago. He attributed these to the better educational opportunities as contrasted to institu­ tional upbringing in the past. This group of children deserve better service such as preparation for normal school prior to entrance, continuous support after entrance and special rem­ edy such as social skill training, remedial education, etc., to cater for their specific deficit.

It is therefore obvious that there should be a change from a hospital or clinic based service to that of a community based service, aiming at mobilizing and supporting other child care organization and schools in helping the autistic children. A comprehensive services, including inpatient, daypatient, out­ patient, outreaching services and expertise in managing the most difficult cases and in working with other disciplines in the community are required.

SUPPORT AND RE.SOURCE CENTER FOR PATIENTS

Autism is a lifelong handicap. Parents often learn about their children's handicap gradually. They have to live through the experience of shock, the value crisis of needing to re-adjust their expectation, and grieving over the loss of their ideal child. It is followed by the reality crisis, needing to adjust themselves to real life problems of facing an unresponsive child who often behaves inappropriately.

Due to their normal appearance, parents need to face a constant humiliation as others would expect their children to behave normally. Parents often complain bitterly about their dreadful experience of going through the ordeal of initial shock and how they felt unsupported at the most traumatizing mo­ ment. They complain of not being given adequate explanation and counselling. They complain of needing to wait among adult psychiatric patients for the assessment and being told that there is no magic cure. Parents also complain about the in­ adequacy of services. There is thus a need for expert and skilled counselling to help parents understand and cope with the complex mixture of sadness, guilt, bewilderment and often hostility associated with having a severely handicapped child. The addition of an autistic child could have major impact on family relationships. Discord and divorce among the parents are not uncommon and depression is a frequent morbidity. Other siblings also suffer from lack of attention and the humili­ ation of having an autistic sib. Psychiatrists are in a good posi­ tion to offer services as a support and resource center for the families.

ADVICE ON POLICY

Services for autistic person are limited and segregated. A wide range of services including psychiatric services, early training, school placement and continuous support, _job- place­ ment and subsequent accommodation are required. Despite the effort of some advocacy group, the situation is far from satisfactory. Some basic information such as the basic epide­ miological data are still lacking. In 1983 the WOPSCET commented that "up till now, we have no reliable count of autistic children in Hong Kong". In 1992, the Working Party on Services for Autistic Persons com­ mented that there has not been any solid date about the num­ ber of autistic persons in Hong Kong. Something should defi­ nitely be done. Fund should be made available to conduct such an epidemiological study.

The educational need of autistic children is very important. We know that autistic children learn better in a highly struc­ tured environment (Bartak & Rutter, 1973). Skilled specialized education, preferably on a year-round basis, is required. Inte­ gration into normal or special school should take into consid­ eration their additional handicaps and their strengths. It would be preferable that they should be placed in a school that is ap­ propriate to their intelligence, with additional provision for their special impairments, rather than in schools for children with lower intelligence.

Autistic persons require long term support and advice. At present, the Social Welfare Department of Hong Kong is re­ sponsible for preschool care and service provision after school leaving at the age of 16. Again, special provision for autistic person is either not adequate (in preschoolers) or not available (in school aged children and adults). Integration with other handicapped or non-handicapped is only desirable if additional resources and trained staff are available to address the autistic persons' additional impairments. There is an urgent need to develop services addressing their accommodation, occupa­ tional and recreational needs for grown up autistic persons.

The education and training of staff involved in the care of autistic persons in different discipline and in different setting are of paramount importance. Funds should be made available for organizing training programme locally and maintaining contact with overseas centers. Public education is also required. 111e present arrangement of segregated service by the medical institutions, the Education Department and the Social Welfare Department have created some bridging problems. Psychiatrists have taken an active role in some of the Govern­ ment Policy Advisory Bodies. Unfortunately, some, if not most, of the recommendations by the 1983 WOPSCET (e.g. hospital classes) never really materialize due to the lack of funding. In the 1992 Working Party on Services for Autistic Persons, child psychiatrists had also played their roles. It is hoped that some of the recommendations, modest as they may be, can be materialized in the very near future.

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S.F. Hung MBBS, MRCPsych, DPsych Consultant Psychiatrist (Child & Adolescent), Kwai Chung Hospital, Kwai Chung, Hong Kong.