This paper describes the challenges in starting a service for the diagnosis of and intensive therapeutic intervention for children with autism in a provincial town in western Greece (Messolonghi). Personnel had to be trained, the community had to be educated to accept and use the new service, and stigma had to be dealt with. Currently, fully developed 10 years after the beginning of the effort, in any one week the Day Centre serves on average 35 children with autism and 20 children with specific language impairment. The treatment programme runs along behavioural lines and the results are presently encouraging. Of 32 children referred consecutively to the Centre, after 5 years eight (25%) were attending regular school classes without a diagnosis of autism and eight (25%) with milder symptoms were attending classes with academic assistance. The limited impact of the Centre on the wider community is discussed.
The Day Centre for Children with Developmental Disorders is a service for the diagnosis and treat- ment of pre-school-age children with severe developmental disorders. The main objective of the Centre has been the early diagnosis of these disorders and initiation of treatment without delay. The focus of the effort has been intervention for children with autism spectrum disorders, given the severity of these conditions and the poor prognosis in the absence of an early and intensive behavioural intervention. The programme also undertakes the assessment of and therapy for children with specific language impairment. The Centre is located in Messolonghi, a small provincial town in western Greece. It covers a wide geographical area since no similar facility exists in the surrounding regions. The service is provided free.
Setting up the Centre
The Centre was established through a private initia- tive and with the support of the local community, of professionals from Athens and of officials of the Ministry of Health, which supervises and supports it financially. Funds were also provided by a special programme supported by the European Union, particularly to renovate a large heritage building in the middle of the town to house the Centre. The Centre started to operate early in 2005.
Setting up the Centre presented substantial dif- ficulties. No specialist personnel could be found in this region of the country. The staff nevertheless were recruited locally. All were young people with
higher education but with no expertise in develop- mental disorders such as autism, with the exception of a speech therapist. Intensive effort was made to have all of them trained in special programmes in Athens. Systematic effort was also made for in- service training, often with invited experts. The gradual skills development, particularly within the framework of evidence-based practice, might be considered adequate.
As the Centre was about to offer a novel service, informing the local community was a priority. Using the local media and often with contacts in person, the staff informed key public figures about the existence of the Centre and the services it was going to offer. The information campaign addressed in particular 40 paediatricians practis- ing in the area and teachers at several nurseries and infant schools all over the province. This obvi- ously had an important effect, as it led to several referrals to the Centre. Initially, older children with autism, who had mostly been neglected, were referred, whereas those seen in recent years are typically aged 2–3 years. Obviously, the informa- tion campaign has had an impact, in that it has led to the referral of younger children.
A campaign against stigma was also conducted with the aid of the local press, although it was perhaps not as vigorous as it should have been. People at first did not want to be seen bringing their children to the Centre. However, as time went by and a positive image of the Centre emerged, the stigma subsided. Consequently, children with a variety of behavioural, emotional and learning problems began to be referred, which led to the establishment of an adjunct service (with limited resources).
A search for effective methods of intervention had been conducted while the plans for the Centre were still being drawn up, and a decision was made that a behavioural model would probably be the most effective and so it was adopted. Conse- quently, the training of the staff has been oriented towards the behavioural methods of intervention. An 80-hour course on the theory and practice of applied behavioural analysis was provided by a specialist team in Athens, early in the operation of the programme.
Over time, two therapists emerged as competent in behaviour therapy, one in group socialisation activities, one in occupation therapy, one in family work and three in language/speech therapy, all within the field of their specialty.
A child psychiatrist supervises the programme. Two competent administrative officers assist in the running of the programme. The clinical work is coordinated in two weekly meetings in which all staff participate. Difficulties and particularly prob- lematic cases are discussed.
At the initial stages of operation, a few parents expressed doubts about the competency of the staff to deal with a child with autism, especially an older child. It took patience and work with the parents to develop trust, and supporting supervision of the therapists to improve their competency and self- confidence. To stimulate higher-order learning about autism, every worker in turn presents and discusses at weekly sessions a relevant article on the specialty from international journals.
In discussions on how to improve the effective- ness of their work, the staff noticed early the need for a tool that would keep them oriented to the developmental level of the individual child and to trace that child’s progress over time. Conse- quently they developed an observation scale which describes the developmental level according to detailed observations on nine scales of progress from a few months to 6 years of age. Information for the construction of the scale was drawn from textbooks and journals of developmental psychol- ogy. The tool was named EDALFA (Kotsopoulou et al, 2014). Completed every year for a child in therapy, it provides the rate of progress and sets the therapy goals for the immediate future.
The speech therapists at the Centre have been credited with the use of an innovative therapy method which originated in Canada (Hicks, 2006). The method, ‘Phoneme Touch and Say’, has been particularly effective with children with autism.
Coming of age – 10 years later
In 2015 the Day Centre completed 10 years of operation. It functions adequately, as shown by the results for the young children in treatment. On average, in any one week 35 children with autism and 20 with specific language impairment attend therapy sessions. Children with autism proceed through two stages of therapy. The first consists of individual sessions (behaviour, speech and occupational therapy) for a total 6 hours a week over a period of 2 years or longer. Next, the children enter a collective group socialisation programme that lasts a year or more. During this stage children who would likely start state school in the near future are prepared in grammatical skills in small groups. The third stage is entry to state school with no special support and limited follow- up from the Centre.
Fostering warm relations with the children and rewarding them socially in treatment have been characteristics of the programme. The genuine warmth of provincial women therapists has been an asset. Similarly, trusting relationships with parents are developed. During the intensive hours of work the Centre is a pleasant place to be.
Parent involvement has been limited to family work. This involves both parents focusing on
their management of the child and guidance on self-education on autism. A home visit by the social worker to direct parents on management is often made. Efforts for group work with the parents met with considerable resistance, which it was thought related to living in small communities and to local culture.
The effect of the programme’s intervention is evident in an early study of 32 unselected children referred with autism spectrum disorder (ASD). Five years after referral, 8 (25%) had no diagnosis of autism according to their scores on the Autism Diagnostic Observation Schedule (ADOS) and clinical judgement (DSM-IV criteria) and they attended regular primary education school classes, albeit some with cognitive sequelae and academic difficulties, while 8 more presented with mild symptoms of autism and attended regular classes, again with academic difficulties, requiring supple- mentary support.
Research at the Centre has been limited to clinical outcome studies. The effort has been fa- cilitated by the use of the ADOS and more recently by routine use of the Greek version of the Social Communication Questionnaire (SCQ).
The Centre provides 6-month practice to speech therapy students from the Technological Educa- tion Institute of Patras. Upon graduation, most of the students settle and practise their profession in the surrounding regions.
Limits of the programme
The supervision of the staff on their work has been limited, with the exception of speech therapy, due to the absence of highly trained professionals in this region of the country. Indirect supervision is exercised in the meetings of the teams while reviewing the objectives of the EDALFA tool and setting new ones and in the larger weekly meetings at which cases are presented.
Despite the organisation by the Centre of three Panhellenic meetings on autism in Messolonghi (2007, 2009, 2011), which were well attended by professionals, the impact on the wider community of having started a service for children with autism in a province may be considered negligible. No one has shown a similar interest in imitating this experiment in another Greek province. Instead, professionals in private practice in small teams attempt to imitate the activity of the Centre in other towns.
Starting a programme like the one described in this paper in a provincial cultural environment requires commitment, determination, some local support and certainty of ongoing government financing.
Hicks, J. (2006) Phoneme Touch and Say. Private published in Nova Scotia, Canada.
Kotsopoulou, A., Georgiou, A., Gyftogianni, M., et al (2014) A tool for setting therapeutic goals by the interdisciplinary team for the preschool child with ASD. Psychology Research, 4, 354–363.