Mythily Chari, Director, IRIS
Perhaps no other disorder has been as misunderstood and mismanaged as autism. While we now have substantial data on the possible causative factors and the treatment for this disorder, the educational community has not made many breakthroughs by way of strategies for intervention. When autism was viewed as Emotional Disturbance/Behavioural Disorder (ED/BD), the approaches for treatment were heavy on behavioural management and structure in the environment. If the child reacted to change adversely then the environment was kept the same. While interning at the Children’s Hospital I was told to pose for a photograph, wearing the same dress that I would wear a week later, to meet the children. The teacher, in the meanwhile would have ‘introduced’ me to the class as Mythily who wore a red T shirt and blue jeans. We had to keep a meticulous record of all that happened while we interacted with the children. If inadvertantly I upset the child and she threw a tantrum, then we analysed as to the whys of it so that in future such behaviour could be avoided. I was trained in the behaviouristic model, we doled out chocolates or potato chips for ‘good sitting’ and ‘looking at me’. In all the voluminous paper work I lost the kids somewhere. I worked with the kids for a semester without any dramatic results and came away with the impression that children with autism should be treated with great care as though they were porcelain. The following in brief is an account of my attempts at nurturing the hybrid plant in my home country.
When I started my professional work in India I tried to incorporate some aspects of the ‘time tested’ behaviouristic model. The staff baulked at the paperwork; they were slack at submitting observation records and monthly plans. Lack of funds prevented the teachers from positively reinforcing appropriate behaviours with edibles; however children with autism were not the worse for it, the child learned to say ‘toffee later’ or ‘afterwards’ and the teachers sometimes even forgot to reward! But social praises and teacher attention were given in plenty which were for free. Since there were just four sections grouped according to functioning level, teachers haggled for kids with the right level of mental retardation and /or autism, the child with autism was integrated with children of varying exceptionalities. The students thrived in this ‘integrated’ setting. When I compared notes with those kids with whom I worked abroad, each one of them is institutionalised or is at a group home and my colleagues in US are amazed to know that all our kids are staying with their families.
In India, however, I had to abandon the ABC model within a short period of two years. Instead, I started listening to the children and found remarkable talents and strengths. The kids conveyed in their indirect way saying, “no thanks, I do not want to be programmed for life”. Behaviour management was no longer a race to gain control, our classrooms were much more disciplined anyway and social norms were usually taught by peers. Teachers managed fairly well with a much higher teacher pupil ratio for the very same reason. They had much less paper work in the form of maintaining records and none at all to protect themselves from litigation. Very few special schools could afford a psychologist or a counsellor, so the teacher had considerable autonomy which would be the envy of a teacher in the US. Parents respected the teacher for the service that s/he provided and did not interfere in the disciplinary methods.
A decade later I revisited my Alma Mater to learn more about autism specific diagnoses, assessment and intervention and enlarge my repertoire of skills. I observed a ‘Football Team Mentality’ among professionals following any particular therapy methods. If you were ‘Lovaased’ then you pledge allegiance to that method only, for whatever reason I was not allowed to ‘contaminate’ the subjects in the control group with any other strategy that could be attributed to some other ‘team’, however suitable that method could be. In the same manner, Lovaas was a six letter word that was taboo in another set up that followed its own brand of therapy approach. Thus one system literally excluded all other approaches. My philosophy to therapeutic approach is never to straitjacket the child with autism into any system. I advise the parents to go for what works for their child, apply any method that is best suited at a given point of time. Developmentally too, what applies at one stage may not be necessary or applicable at a later stage. In short, the child transcends all approaches and not vice versa.
Person Centered Approach (PCA)
My objective is to teach skills to the child that will enable him/her to understand the environment better and participate in the activities of the community. When I start working with parents, I find them in a ‘black hole’. Through training they get to know the needs of children with autism and within that framework, the needs of their child. Parents have to commit to getting trained, it is advised that at least a two member ‘team’ from the family of the child attends the programme. Keeping in mind the nature of the disability and the constraints parents have in earmarking four consecutive Saturdays, the training programme is on-going and new members can join any time. On completion, a certificate is given to the parents. Trained parents in turn assist teachers in handling their children better. Parents draw substantial support in the company of other parents.
While the child becomes the focal point in deciding the nature and range of therapy services, parents’ needs are also prioritized. For example, a mother, the primary caregiver for her child, is going over to her parents’ place for her second delivery, as is the custom in India. She wants a four month home training programme that she could carry on, and she intends to put the child in a school after a gap of six months. Another child who is high functioning and diagnosed with Asperger Syndrome is ready to attend the third grade; however he lacks the necessary social skills and the mother wants to get him to be ‘school ready’ before he is admitted to any school. She is very sure that premature placement in a regular school will result in his being expelled for inappropriate behaviour.
In India, special educators lack adequate experience in handling children with autism. We do not have a certification process by which a teacher can go in for a certification similar to TEACCH at Chapel Hill, North Carolina. IRIS has adopted the TEACCH model. Inservice training for (regular and special) school staff in handling children with autism and Asperger syndrome is conducted, so that the facility is INCLUSIVE and LEAST RESTRICTIVE for the children. Parents are advised to insist upon trained teachers handling their children. Future projects include settings up of therapeutic preschools where children with special needs can be trained in integrated settings, Multidisciplinary Diagnostic Teaching Clinic and a Communication Lab to address specific problems of children with autism and Asperger syndrome. RIS intends to provide all the services under one roof, be
if Auditory Integration Training (A.I.T) or Sensory Integration Training (A.I.T) or Sensory Integration Training (S.I.T), so that the therapy requirements of children with special needs are met.
The first step in person centered approach is to assess the child in the home, (exception to this rule is only when the family comes from outstation) and the interview conducted in the child’s mother tongue. I use the child’s toys and books first before introducing my collection. Parents are present throughout the session and they, and even the siblings, are invited to join in the game. The child’s preferences are given the lead and it is the child who accepts or rejects an activity. The duration and the manner of play is also decided by the child. I access the functional level of the child, the level of imitation, the typical and atypical play, the optimum and modal level of play according to the Symbolic Play Assessment Protocol developed by Lombardino and Kim (1993). Social skill behaviour (turn-taking, waiting, and sharing) and problem solving skills are also assessed through play. The play scale mentioned earlier is divided into three categories;decentration (roles), decontextualisation (objects) and integration (actions) and is arranged hierarchically in order of increasing difficulty and assesses the play behaviours of preschool children.
According to Mc Cune-Nicolich and Carrol (1982), play and communicative behaviour correspond to each other. In the publication, “Development of Symbolic Play: Implications to the Language Specialist”, play and language behaviours are divided into five levels and children between 11 and 24 months are assessed. Earlier literature on play research
(Westby,1988) and (Rygh and Altshuler, 1984) offers scanty information on the manner in which children with autism play symbolically. However recent research papers contend that the child with autism is no less impaired at generating original actions with dolls (Lewis and Boucher, 1995). In the preschool setting, children with autism can be paired with normally developing peers and through ‘priming strategy’, spontaneous communication can be increased without excessive teacher intervention (Zanolli, Daggett and Adams, 1996). Though children with autism are deficient in some of the imitative skills, Dawson and Adams (1984) have
demonstrated that they are capable of responding if someone mirrors them. Imitation may act as a catalyst in bridging the developmental lag between the child’s functioning level and the Zone of Proximal Distance (Vygotsky, 1964). Even when children with autism do not imitate an action immediately, they are capable of reproducing them later, may be a case of echopraxia (Libby, Powell, Messer and Jordan, 1997).
A Mother of a child with whom I worked, remarked that she had never played making tea or cooking or doll play with her son, as they were not considered appropriate for boys. During the assessment, I poured pretend tea for the child, he said ‘small kids don’t drink tea’ (perhaps a remark by the mother which he had heard earlier). Then we pretended that we were drinking cola from the cup. He, it was reported, two days later, put a cup to his toy parrot and said ‘drink cola’. The level of spontaneous communication in pretend play was never elicited by the mother before.
It has come to my notice that children with Asperger syndrome have depressed play skills especially in the object susbtitution and agent play but are good at thematic play. The children with whom I have interacted have displayed far superior verbal than play behaviour. I intend documenting my work so that I can see if higher level symbolic play can be elicited from children with Asperger syndrome to correspond with their language.
Lack of social skills is one of the three deficits in the triad: Communication, Socialisation, and Imagination that characterise children with autism. Play offers a rich canvas to elicit all three behaviours, in a child friendly, autism specific way, that is also non-threatening. Some of the social deficits exhibited by children with autism are lack of emotional bonding with caregivers and the tendency to develop strong attachments to objects/toys rather than humans (Cairns, 1984). Even in a preschool set up, it is not enough to place children with autism among children who are normally developing and furnish them with toys. Oversensitivity and hyper reaction to stimulii will defeat the very purpose of integration and the child with autism will not benefit. By carefully structuring the environment one can nurture socialisation and friendship. A child aged three years used to grab a favourite food item from the lunch boxes of his peers. The teacher who was not trained used to admonish him to no effect. She even suspected he was hearing impaired. I taught him the ‘please give’ gesture of open palm and the situation dramatically improved, the little girl not only gave him a
piece of orange, but told him to say ‘thank you’, thus a gesture and a phrase was taught to him in a naturally occuring context which was motivating. Communication should not left to happenstance, but facilitated through careful planning.
Our approach to behaviour is proactive rather than reactive. Parents and teachers are trained to assess the function of any challenging behaviour, so that they can form a hypothesis and test it. The emphasis is more on engineering the environment and fixing the little pieces so that the child with challenging behaviours can communicate in a socially appropriate and universally understandable way, rather than resort to aggression. In short, support the behaviour in a positive manner which involves training all the caretakers to react uniformly. The onus of generalising a skill falls on the caregivers rather than on the child. The mother is also assisted in creating a safety and support net for the child and the family. Through training, the parents feel empowered in creating these resources in the community and in turn, the child/person with autism functions in the mainstream as would a person without autism.
Training is the key to effectively handling children with autism. There is a need to develop human resources in special education and related fields. How efficiently a caregiver provides services depends on his/her understanding of autism and the nature and needs of this disorder. I wonder if people with autism are closer to Nirvana than mere mortals like us. They have the quality of detatchment, contentment and pristine purity. Are these to be condsidered as gifts or a disability? I am in no way glorifying the disorder but autism remains an enigma to me.
1.Cairns, R.B. (1979). Social Development: The origins and plasticity of interchanges, San Francisco: Freeman.
2.Cairns, R.B. (1984). Social Development: Recent theoretical trends and relevance for autism. In Schopler, E. Mesibov, G.B, Social behaviour in autism, NY: Plenum Press.
3.Johnson, L.F., Dunlap, G. (1993). Using Functional Assessment to Develop Effective Individualized Interventions for Challenging Behaviours. Teaching Exceptional Children, 44, 44-50.
4.Lewis, V., Boucher, J. (1995). Generativity in the play of young children with autism. Journal of Autism and Developemental Disorders, 25, (2), 105- 121.
5.Libby, S., Powell, S., Messer, D., Jordan, R. (1997). Imitation of pretend play acts by children with autism and Downs Syndrome, Journal of Autism and Developmental Disorders, 27, (4), 365-383.
6.Lombardino, L.J., Kim, Y. (1993) unpublished Scale. Symbolic Play Assessement Scale. Department of Comunication Disorders, University of Florida.
7.Mc Cune- Nicolich, I., Carroll, S. (1981). Development of Symbolic Play: Implications to the language therapist. Topics in Language Disorders, Dec, pp150-172
8.Vygotsky, L.S. (1964). Thought and Language. New York: Wiley
9.Vygotsky, L.S. (1967). Play and its role in the mental development of child, Social Psychology, 5, 6- 18.
10.Vygotsky, L. S. (1978). Mind in society: the developmental process of higher psycholingual processes. Cambridge: Harvard University Press.
11.Westby, C.E. (1988). Children’s play: reflections of social competence. Seminars in Speech and Language, 9, (1), 1-10
12.Zanolli, K., Daggett, J., Adams, T. (1996). Teaching preschool age autistic children to use spontaneous imitations to peers using priming. Journal of Autism and Developmental Disorders, 26, (4), 407- 422.