Page One | Encouraging Play Skills | Understanding and Teaching Friendship Skills | Legislation for the Most Marginalised |
The Autism Spectrum: Understanding the Puzzle | Residential-cum-Vocational Permanent Living Complex: A Call to Parents |
The Body and Learning: A Focus on Autism | Helpline | Letters to the Editor | Announcements

N E T W O R K

August 2001 Vol. VIII, No. 2

Page One

The summer has been as eventful as any other time of the year. An AFA team gave a four-day training workshop in Goa that was organised by Sangath, a truly energetic and focussed
organisation under the dedicated guidance of Dr. Nandita de Souza. The workshop was a great experience for our team: interacting with families, educational professionals and doctors, and enjoying the beauty of Goa, the warmth of the people, and relishing the famous Goan Cuisine.

Earlier there was a Conference at Vadodara, organised by Disha. A team of two was invited from AFA to present on Autism along with Dr. Vrajesh Udani from Hinduja Hospital, Mumbai, and Ratna Bhilwani from Vadodara.

In May I returned full of ideas from a study tour visiting kindergartens, schools, and residences and work centres for people with autism in Denmark, and the opportunity to discuss issues with experienced pedagogues and other therapists.

The National Trust now has a Chairperson in Mrs Aloka Guha. The initiatives taken by Mrs Jayati Chandra, the CEO are being taken forward under Aloka's able chairship. A scheme for 'Reach & Relief' has been finalised, as has been the form of application for appointment of Guardian for a person with disability. Mrs Gauri Chatterji, for many years Joint Secretary in the Ministry of Social Justice and Empowerment and a wonderful support to the disability sector, has moved back to her home state. She will be much missed. We are glad that Mrs Rajwant Sandhu who is equally open, knowledgeable, and supportive, takes over.

Our struggles on various fronts still continue; including the one with DDA. Amazingly though there is no dearth of obstacles in our path they simply do not affect the sense of hope and achievement at AFA.

This issue the focus continues on understanding, teaching, and encouraging various social skills. It also gives the final call for upcoming workshops.

Encouraging Play Skills
Indu Chaswal

Play is an integral part of the developmental process in young children. Play occurs spontaneously, serves as an important medium for informal learning, and it is also fun for all children to play. Lets look at play skills in typically developing children keeping in view the cognitive and social aspects of growth.

Cognitive Aspects
At a very basic level the child starts playing with objects for sensory stimulation (rattles, bells on the crib, musical boxes, chimes etc). Very gradually this develops into what is known as exploratory play; The child chews, bites, licks, shakes, rubs with his hands, and also examines toys by turning them. Further sophistication in play is achieved leading to the next stage of Relational Play in which the child establishes relationships (e.g pen to paper, bat to ball, spoon hit on a plate to make a sound). After this develops differential play when the child fixes objects of different shapes and sizes (blocks, pegs, stacking rings).

When a child has autism this kind of play might develop in not necessarily the same sequence as in a typically developing child. With the sensory difficulties that most children with autism have, they may play with objects for sensory stimulation for a much longer time. Again due to uneven skill development there may be a child who is excellent at differential play (blocks, puzzles, stacking etc.) even before he has learnt to use objects for relational play.

Most children start developing pre symbolic or pretend play around 9 -12 months. So, there is a transition from stereotypical to functional play. For example the infant may push a car rather than mouth it or hold it between his feet. Further, symbolic play evolves when the child uses imagination to keep himself occupied, for example pretending to feed the doll milk with an empty cup. As he grows he may use objects and pretend that they were something else for example holding a comb and pretending to shoot with it as though it were a gun while making firing sounds from his mouth.

In children having autism there is a lack or absence of pretend play. This is because of an impairment in imagination and imitation. However it cannot be said that a child with autism cannot play this way. Some of them can though in a very repetitive or limited manner. Symbolic play can be taught but it tends to remain stereotypic rather than imaginative. In a few children functional play can be seen to evolve so that they may play in imitation of real situations they have observed. However, they may have difficulty in using their imagination to further build on this play.

Social Aspects
Even when the child is very young and in the crib it has an inseparable bond with the caregiver. As he grows, the child actively engages in peer interaction. In a park it a very common sight to find a toddler walk up to another little one sitting in a pram or walking with an adult. There is an instant attraction between peers. Autistic children generally do not show this sort of interest in other kids of their age or else the interest and interaction is inappropriate. This is the main reason why shared play is rare or non-existent, except some rough and tumble or chasing.

The child may sometimes push or pinch another child. He does this to get some kind of a response from the other child. Here it is important to remember that there is impairment in social skills and therefore the child cannot figure out appropriate play behaviours. As the children grow, with many of them and especially for those who receive some kind of early intervention, solitary activities decrease and the child may attempt to involve himself in either shared or parallel play (explained later).

It is very essential to teach the child appropriate ways of involving in such activities. In our last issue (April 2001) we shared with our readers some very simple ways of teaching turn taking games to children with autism through simple visually and verbally clear activities.

To teach play skills, first of all we want to assess the developmental level of the child, see what he is able to do and then build on it. In whatever we do we want to be child-like, sometimes silly, and creative, and keep up levels of Energy, Excitement and Enthusiasm. That itself takes care of about 50 per cent of the job.

Some of the things we can do to encourage play:

Play games at the level of the child
Break the play down into small steps with the level of difficulty increased only after the child has successfully mastered the activity at lower levels. For example before teaching the child to aim at and knock over bowling pins, or throw a ball at a bat, you may require to teach the following steps:

o Hold the ball (you can start with a bean bag as it might be more interesting for some kids) and teach the child to simply 'throw.'

o Next teach him to throw at a target at a very close range (so for example throwing the ball in a basket)

o Slowly increase the distance from which the ball or bean bag has to be thrown.

Provide adequate opportunities to practice each step, so that he gets enough practice. We want to remember to keep it fun so that the child enjoys the game each time.

o Model play for your child. For example take a bottle and pretend that it's a bat. Hit a stationery ball with it. Give the child his turn and say "Oh! Hit the ball with the bottle. It looks like a bat. " Or pretend that it's a comb and pretend to brush your hair with it.

o Set the scene, arranging a play activity so that the child knows what's going to happen. For example, a pretend birthday party. Set the entire scene - dolls, toy chairs, tables, eatables, etc. Remember of course that the child gets to eat the cakes or chips or whatever items you have set out and that he likes. Eventually we want to work towards the child helping to set the activity up.

o If the child is uses toys roughly its best to initially ignore that and instead praise him when he plays appropriately. Ideally rather than getting too anxious about expensive toys it is better to use inexpensive items and objects and stay comfortable during playtime.

Remember play is for fun. If your child prefers simple toys rather than the hi-tech ones, that too is okay. And in fact better! And if he likes expensive items try and get variations of his favorite ones.
o It is not important for a child to always play with others. If sometimes the child is playing alone let him do it

o Involve others in group play activities. See the April 2001 issue for more details on this.

o Remember to prepare your child for other kids who will be joining in the play activities and vice versa.

Initially work on parallel play. Let the child play with his set of toys or games sitting near another one who has his own set of things.

Follow this with shared play. The kids use things from the same basket or box but play independently.

Finally, associate play. Help the child to play with the other child (towards a common goal). For example two, or maybe more, kids can take turns to fix blocks to build a tower or colour parts of the same picture. It is important for an adult or a teacher to be a facilitator in this kind of play and this facilitation may be needed for quite some time.

o Predictability is a necessary and important issue with most children with autism. Give accurate information - how long the play will go on, when will the other kids leave, and what happens next?

o Provide alternatives. If the child is not willing to play one game, try another. Respect the child's choice. Do not force a child to join in a game if he/she is not interested. But, if you are creative, excited and energetic the child will be interested.

o Remember to have FUN while playing.

In our next issue (December 2001) we shall write about some games that can be played with children and also young adults with autism.

 

Understanding and Teaching Friendship Skills
Tony Attwood and Carol Grey
Printed with permission of the authors.

One of the central diagnostic criteria for Autistic Spectrum Disorders (ASD) is a failure to develop peer relationships and clinicians examine how the child conceptualises and demonstrates friendship skills. Normal childrens' conception of friendship changes over time and it is notable that children with autism and Asperger's Syndrome often have an immature and unusual definition of friendship. The research literature on the concept of friendship indicates there are four levels between early childhood and adolescence. The four levels are summarised as follows:

Level 1: Approximately 3 to 6 years.
The child recognises that games and activities cannot happen unless there is an element of turn taking but there is an egocentric or simple conceptualisation of friendship in terms of defining a friend as someone who gives you things or someone you play with. Friendship is based on
proximity and physical attributes and when asked, Why is.....your friend? The typical response is: He lives next door!

Level 2: Approximately 6 to 9 years.
There is an increasing understanding of the concepts of reciprocity and mutual rather than one-way assistance. The likes and dislikes of the other person are more likely to be considered with friendship based on how closely each friend matches their self interest, for example, in
liking similar games. There is also a new awareness of the motives, thoughts and feelings of others. When asked, Why is.....your friend? The typical response is: He lets me play the games I want to, or Because she comes to my party and I go to hers, or She's nice to me.

Level 3: Approximately 9 to 13 years.
The child is more aware of other peoples opinions of them and how their words and actions affect the feelings of others. They are more careful in what they say and do because it may be hurtful to someone. Friendship can be based on shared experience or common interests and helping becomes more valued than simply playing together. There is a greater selectivity in choosing friends, a gender split and a greater durability in the relationship. There is increased value placed on personal attributes such as trust, loyalty and keeping rather than breaking promises. When asked, Why is .....your friend? The typical response is: He sticks up for me and helps me with my maths homework, She enjoys doing the things I like to do, or I can talk to them and they listen.

Level 4: Adolescence to adult.
Peer group acceptance becomes more important than the opinions of parents, there is a greater depth and breadth of self disclosure, desire to be understood by friends and recognition that there are different types of friendship -from acquaintances to close friends with autonomous
interdependence. When asked, Why is..... your friend? The typical response is: Because we think the same way about things.

When children with an ASD are asked, What makes a good friend? clinical experience suggests that a common response is a list almost exclusively of actions that a friend should not do, eg. bully or tease you, which indicate that the child has experienced a disproportionate level of negative experiences in their peer relationships. They know what a friend should not do but have little idea what they should do.

Social Play with Friends
The social play of children with an ASD is often more immature than their peers and includes unusual characteristics such as having less motivation to seek friends, autocratic qualities and being less able to demonstrate the wide range of behaviours that we use as an index of friendship skills. The traditional school curriculum pays little attention to the development of friendship skills yet these skills are the foundation of abilities that are highly valued by adults in their professional and personal lives, namely having teamwork skills, the ability to manage conflict and having successful personal relationships. A recent study examined the perceived quality of life of high
functioning adults with autism and Asperger's Syndrome and only one variable, a few hours spent with friends, was able to significantly predict the scores on any of the quality of life measures . These adults valued and desired friendships more than anything in their lives, yet few had the ability to maintain acquaintances, let alone friends. As children we were never directly tutored in friendship skills, so how do we start teaching someone who appears to lack the intuitive ability we take for granted?

The starting point is an assessment of the friendship skills the child demonstrates and the skills that are conspicuously absent. We have standardised tests to measure cognitive, linguistic and movement skills but at present we do not have standardised assessment instruments for friendship skills that can be applied to children with an ASD. However, a review of the research literature on the range of social behaviours used as an index of friendship skills with ordinary children can produce a primitive checklist of friendship skills for children with Asperger Syndrome.

The key social behaviours to be examined are as follows:
Entry Skills: How the child joins a group of children and the welcome they provide for children who want to be included in their activity.
Assistance: Recognising when and how to provide assistance as well as seeking assistance from others.
Compliments: Providing compliments at appropriate times and knowing how to respond to a friend's compliment.
Criticism: Knowing when criticism is appropriate and inappropriate, how it is given and the ability to tolerate criticism.
Accepting Suggestions: Incorporating the ideas of others in the activity.
Reciprocity and Sharing: An equitable distribution of conversation, direction and resources.
Conflict Resolution: Managing disagreement with compromise, and recognising the opinions of others. Knowing not to respond with aggression or immature mechanisms.
Monitoring and Listening: Regularly observing the other person to monitor their contribution to the activity and body language. Their own body language indicating interest in the other person.
Empathy: Recognising when appropriate comments and actions are required in response to the other person's circumstances and the positive and negative feelings of others.
Avoiding and Ending: The appropriate behaviour and comments to maintain solitude or end the interaction.

The next stage is to use behavioural and cognitive strategies to maintain and improve friendship skills. If the skills outlined above occur, then it is essential that such behaviour is recognised and rewarded. The authors would add that the praise should also be directed at the other child, as they need encouragement to maintain their friendship, especially as such children are often not among the most popular children in the class or neighbourhood. It is also essential that the child's social play is monitored by an adult to identify when the cues for specific friendship skills occur but the child has not recognised them or is unsure how to respond. The child's attention is drawn to a specific cue or opportunity and verbal prompts and instruction given as to what to do. This is an application of the traditional behavioural techniques of task analysis, prompting, shaping and reward. Children with an ASD are unusual in that they can be taught what to do in a given situation, but they may not understand why the action or comment is appropriate. They need to learn the theory as well as the practice. Conventional programs to encourage friendship skills with ordinary children make assumptions that may not be applicable to children with an ASD who have significant problems with Theory of Mind Skills, Affected Relatedness, Central Coherence and Executive Function. However, Social Stories can be used to assist the child to acquire the necessary cognitive mechanisms.

The following is an example of a social story for a grade one child who needs to learn about the concept of assistance in friendship. It is designed to understand what 'help' is:

Sometimes children help me
Sometimes children help me. They do this to be friendly.
Yesterday, I missed three math problems. Amy put her arm around me and said, "Okay Juanita"
She was trying to help me feel better.
On my first day of school, Billy showed me my desk. That was helpful.
Children have helped me in other ways.
Here is my list:
I will try to say,"Thank you!" when children help me.

How I can help children in my classroom
My name is Juanita. Sometimes, children help me. Being helpful is a friendly thing to do. Many children like to be helped. I can learn to help other children.
Sometimes, children will ask for help. Someone may ask,"Do you know what day it is today" or "Which page are we on?" or maybe something else.
Answering that question is helpful. If I know the answer, I can answer their question.
If I do not know the answer, I may try to help that child find the answer.

Sometimes, a child will move and look all around, either under their desk, in their desk,
around their desk. They may be looking for something. I may help. I may say, "Can I help you find something?"
There are other ways I can help. This is my list of ways I can help other children:
Children like to be helped.

Other techniques can be used to encourage friendship skills such as a friendship diary, matching individuals and support groups. For younger children, a friendship diary can be used to record occasions when the child demonstrated friendship abilities and other children were particularly friendly towards the child. It is interesting that one of the criteria ordinary children use for defining what makes a good friend is someone who has similar interests. However, the special interests of the child with an ASD may not be interesting or popular with their peers.

One option is to identify other children who have the same interest and introduce the two children to each other. An example is a child with Asperger's Syndrome who has a special interest in ants, a solitary pursuit for him as no other of his acquaintances at school shared his enthusiasm and knowledge of this topic. However, by chance, another local child who also has Asperger's
Syndrome, was also interested in ants. When they were introduced a genuine friendship occurred with joint expeditions to observe and collect ants and the sharing of information and resources on these insects. It was notable that each child's friendship skills with other children appeared hesitant and contrived, yet when the two met, their natural friendship skills were far more fluent and spontaneous. This technique can be facilitated by local parent support groups having a registry of children and their interests, pen pal registries, special interest clubs and Internet chat lines.

An extension of personal matching is the development of local support groups run by adolescents and young adults with Aspergers Syndrome. These groups hold regular meetings and excursions to destinations that may not be valued by their ordinary peers, such as museums and transport facilities. These groups provide a social life outside school, and the opportunity to meet someone who shares the same experiences and values, the basis of many friendships for adults.

One of the issues raised during social skills workshops for young adults with an ASD is recognising when someone appears to be friendly but may actually be taking advantage of their social naivety, and how to identify and respond to the different types of personality.

Tuition may be required in identifying hidden motives, seeking a second opinion and how to manage situations of potential abuse. It can also be necessary to teach the strategies of maintaining friendship, coping with grief when the friendship ends and overtures of friendship that are not reciprocated. The authors have also noted that children with Asperger's Syndrome appear to lack an ability to perceive and describe the personality characteristics of others and themselves. When asked, "What sort of a person is____?" their responses are predominantly descriptions of physical attributes such as height or what a person does, e.g. a teacher. What is missing is a wide lexicon to describe the different types of character. When personality characteristics are nominated, a common response is "nice and kind", and synonymous words to this one characteristic. The children appear to have a one dimensional approach to characterisations. Other children can quickly "read" a person's character and adapt their behaviour accordingly. They know which children to avoid and are more proficient in choosing who complements their own personality. To teach such skills in young children with Asperger's Syndrome the authors advocate using the popular Mr. Men stories by Roger Hargreaves. They describe a range of personality types such as Mr. Grumpy and Mr. Nosey and Little Miss Chatterbox.

Another activity is encouraging the child to choose an animal that represents someone's personality. Older children can use adaptations of literature studies to identify the indications of personality type and how to respond to such people. It is important to help the child understand their personality and to recognise the type of person they are likely to get along with and who might become their friend.

RESOURCES ON DEVELOPING FRIENDSHIP SKILLS

Preschool Age:
o Baby Faces (1998) . New York, NY: Dutton Children's Books.
o Conlin, S. & Friedman, S. L. (1991, 1993) . All My Feelings At Preschool. Seattle, WA: Parenting Press, Inc.
o Funny Faces: A Very First Picture Book (1996,1999). New York, NY: Lorenz Books.
o Hallinan, P. K. (1999) . Heartprints. Nashville, TN: Ideal Children's Books
o Rogers, R. (1996) . Making Friends. New York, NY: The Putnam & Grosset Group
o Offerman, L. (1999) . Little Teddy Bear's Happy Face Sad Face. Brookfield, CT: The Millbrook Press, Inc.

School Age:
o Brandenberg, A. (1993) . Communication. New York, NY: Greenwillow Books
o Brown, L. K. & Brown, M. (1998). How to be a Friend. USA: Little, Brown & Company
o The Care and Keeping of Friends (1996) . Middleton, WI: American Girl Library Editor, Pleasant Company Publications.
o Conlin, S. & Friedman, S. L. (1989, 1993) . All My Feelings At Home. Seattle, WA: Parenting Press, Inc.
o Holyoke, D. (1997) . Oops!: The Manners Guide for Girls. Middleton, WI: Pleasant Company Publications.
Kipfer, B. A. (1994) . 1,400 Things to be Happy About. New York, NY: Workman Publishing
o Krueger, D. W. (1993). What Is A Feeling? Seattle, WA: Parenting Press, Inc.

Adult Books:
o Dimitrius, J. & Mazzarella, M. (1998, 1999) . Reading People: How to Understand People and Predict Their Behavior - Anytime, Anyplace. New York, NY: The Ballantine Publishing Group
o Gabor, D. (1983) . How to Start a Conversation and Make Friends. New York, NY: Simon & Schuster.
o Gray, C. (1999, Spring) . Gray's Guide to Compliments. The Morning News, 11-1, 1-17.
Rubin, L. B. (1985) . Just Friends: The Role of Friendship in Our Lives. New York, NY. Harper & Row Publishers.
Mattews,A (1990). Making Friends: A Guide to Getting Along with People. Singapore, Media Masters.

Legislation for the Most Marginalised
Aloka Guha, Chairperson, National Trust

Mahatma Gandhi has said: "Be The Change, You want to see, In the World"

The National Trust aims at being that change. The National Trust for Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disability was enacted by Parliament into law in December 1999.

Its Objectives are:
o To enable and empower persons with disability to live as independently and as fully as possible within and as close to the community to which they belong;
o To strengthen facilities to provide support to persons with disability to live within their own families;
o To extend support to registered organizations to provide need based services during the period of crisis in the family of persons with disability.
o To deal with problems of persons with disability who do not have family support;
o To promote measures for the care and protection of persons with disability in the event of death of their parent or guardian;
o To evolve procedure for the appointment of guardians and trustees for persons with disability requiring such protection;
o To facilitate the realization of equal opportunities , protection of rights and full participation of persons with disability; and
o To do any other act which is incidental to the aforesaid objects

The Board seeks to Implement the Objectives through:
1. Registered Organisations
2. Government Departments and Local Bodies
3. Grassroot wings of the National Trust i.e., the Local Level Committee at the district level

The Local Level Committee consists of:
a. An officer of the civil service of the Union of the State, not below the rank of a District Magistrate or a District Commissioner of a district
b. A representative of a registered organization; and
c. A person with disability as defined in clause [t] of section 2 of the Persons with Disabilities [Equal Opportunities, Protection of Rights and Full Participation] Act, 1995.

In order to co-ordinate and facilitate the activities at the State level, each State Government has nominated a State Level Co-ordinator. In West Bengal, the Commissioner, Disabilities has been designated the State Coordinator.

In West Bengal so far, out of 16 districts, 17 [including Calcutta city] Local Level Committees have been formed.

West Bengal was the first State, apart from Tripura, to form Local Level Committees in all districts barring one.

The Role and Scope of the Local Level Committee:
The Primary role of the Local Level Committee is in coordinating, initiating, protecting the rights and promoting the interests of persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities as per the National Trust Act, its rules and regulations and as per directions given by the National Trust of the National Trust Act from time to time. This includes:
a. Awareness Generation and Interactions on the National Trust Act, the rights of persons with these four disabilities, needs, problems and preferred solutions of the local population of persons with these four disabilities and their families, schemes, programmes, of the National Trust that are formulated from time to time.
b. Works related to Guardianship of persons with these four disabilities i.e., receipt and processing of application, appointment of guardian, monitoring and evaluation of guardianship, removal, if necessary, of guardianship as per the Rules and Regulations, and reporting to the National Trust.
c. Implementation, Monitoring and Coordination of schemes/programmes/initiatives of the National Trust as per directions of the National Trust given from time to time.
d. Promoting the interests of persons with these four disabilities through facilitation of convergence
e. Taking proactive initiatives and measures that concern the local problems /needs of persons with four disabilities and their families
f. Liason with local leaders, Panchayat members, government personnel, representative of NGOs, family and community members for the furtherance of the objectives of the National Trust.

Scope:
The primary activities are related to Guardianship issues, Caregivers Training and Development of Services in day care, Respite and Residential care. Apart from these the scope of the Local Level Committee may include a continuum of activities starting with primary awareness creation, campaign on causes of disability, service needs and provisions, inclusive education, promotion of positive health, skill development, job training, marriage and social inclusion, rights awareness, family support, and any other issue/ concern/ activity/ interest which helps to translate the objectives of the National Trust into action at the Local Level - with the prior permission of theNational Trust.

Schemes:
Two Schemes of the National Trust are under the broad Relief and Reach programme for the Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities. One is for the Establishment of Relief Institutions for providing institutional care; and the other is for Training of Caregivers. Both the schemes have got the Administrative SFC approval from the Ministry recently.

Activities to date:
1. Seventy one LLCs have been formed in seventy one districts - ten states and two union territories.
2. 266 applications from voluntary organisations, of which 166 have been registered. Of these ten are parent organisations.
3. Convergent programmes are under planning for disabled senior citizens, disabled children and adolescents, and for parent groups through NISD, ICDS, RCI, NPRRD, CRC and GPY.
4. The formation and conducting of Five Standing Committees on:
a) Media,
b) Evaluation, Monitoring & Documentation,
c) Programme, Planning and Implementation,
d) Finance and
e) Legal.
5. Awareness Generation Programme by Chairperson and CEO and Board Members in Mumbai, Pune, Karnataka, Ahmedabad, West Bengal, Andhra Pradesh (by end September there will be programmes in Madhya Pradesh, Uttar Pradesh, Rajasthan, Assam, Meghalaya, Tripura, Nagaland, Tamilnadu, Kerala and Pondicherry).

Priorities right now:
o To have functioning Local Level Committees in every State and Union Territory
o To implement the schemes - have home-based caregivers and rehabilitation services for people with these four disabilities
o To have more registrations of voluntary organizations
o To help to form more Parents Associations.

The National Trust is a new initiative. It is also a very challenging one. For the first time ever, the interests of these four disabilities are being served through legislation specifically designed for them. Join us in this national movement and become a stakeholder in the realization of dreams.

The National Trust helps you to: hope, trust, care, build, and dream... more than others consider it possible.

THE ORGANIZATIONAL STRUCTURE OF THE BOARD

Standing Chairperson
Committees

Consultants Board of Trustees JS/CEO
and/or Advisors Office

Guardianships
Issues Local Level Committees
Advocacy Registration Accreditation Awareness
Rights Administration

Services/
Programmes Persons with Disabilities and their Families
Self Help Groups

The Autism Spectrum: Understanding The Puzzle - I
Dr Nandita de Souza, Sangath Centre, Goa

Nitin is three years old and always on the go. Right from his birth he was a cute baby who never cried much. His bright eyes and high energy levels were reassuring to his parents. However there was an odd quality to Nitin's behavior. His parents noticed that even when called, he would not look at them He approached others only if he wanted something. He rarely looked at people directly and was content to play by himself most of the day. He enjoyed spinning the wheels of his tricycle and lining up everything in rows. Nitin hardly spoke but he could say the words of some advertisements on TV. Whenever he heard the signature tune for 'Tu Tu Main Main', he would come running from where ever he was and stand fascinated in front of the TV screen.

Rahul is ten years old and studying in the 4th standard. He is a very bright child and is exceptionally good at science and math. However Rahul is very unpopular in his class. The children say that he is rude to them and does not participate in their games. Rahul gets bullied easily by his classmates who poke fun at him and call him 'Piso'. Rahul knows a lot about cars and can tell you the names, engine specifications and year of manufacture of a wide range of cars. Once he starts talking about cars, nothing can stop him and his parents get embarrassed to take him for a party as he will insist on talking about cars, even if no one is interested.

Nitin and Rahul are very different, yet they both show behaviours that define the condition known as autistic spectrum disorder (ASD) which is gaining increasing recognition as an important cause of developmental concern in childhood. The range of behaviors that can be grouped under the umbrella of ASD is wide and hence the inclusion of the term 'spectrum'. This article will address the features, causes and management of this baffling condition that has interested professionals from fields as diverse as developmental biology and special education.

What is Autism?
Autism, a condition that affects the way in which a person communicates and relates to people around, manifests in the developmental period, usually within the first 3 years of life. Leo Kanner, a psychiatrist, first described classical autism in 1943, over 50 years ago. Since then, better research has brought about a wider definition of the condition. The latest figures from community studies
suggest the prevalence of autistic spectrum disorders is 1 in 500 people. Greater awareness among both parents and the medical profession has led to better detection of the problem. Autism occurs in families across the world regardless of income, race, religion or socio-economic factors.

What causes Autism?
No one knows exactly why children develop autism. Research however indicates that autism can be caused by a variety of conditions affecting brain development, which may occur before, during or after birth. German measles during pregnancy, lack of oxygen at birth and the complications of serious childhood illnesses such as measles and whooping cough can be associated with autism. Genetic causes are gaining importance, though the precise genes involved have not been identified. Autism affects boys more often than girls. A lot of grief was caused to parents in the past when autism was said to be caused by poor maternal-child relationship and 'refrigerator mothers'. We now know that this is definitely untrue. Marital discord, working parents and leaving children in the care of maids also does not cause autism.

How is Autism diagnosed?
The diagnosis of autism can be difficult, as there are no definitive medical diagnostic tests and the judgement has to be made by observing the behaviour and development of the child. A large proportion of children with autism receive improper diagnosis. Parents who seek help from
professionals are often told that their autistic children have 'hyperactivity' or 'mental retardation'. Some are even reassured that the child will outgrow this condition as time passes. The reason for this misinformation is a considerable lack of awareness about the wide range of manifestations
of autism. Some children are very disabled with low levels of functioning. Others have superior intelligence with very high levels of skills in certain areas. Training in medicine or psychology rarely includes more than a brief paragraph on the subject. Therefore professionals themselves have inadequate levels of knowledge about autism.

There are three major features of Autism, which are summarized here:
1) Delay in language development: Most children with autism speak late or not at all. Even those children who do have some speech, do not really use it to communicate.

Often they will repeat what has been said to them like an echo. They may be able to ask for their own needs but find it hard to talk about feelings or thoughts and often do not understand the emotions, gestures, facial expressions or tone of voice of others. Children with better functioning do use gestures but these tend to be odd and inappropriate.

2) Poor socialisation skills: There is often the appearance of aloofness and indifference to other people, especially other children. Parents often complain that the child seems to live 'in a world of his own'. Some children occasionally approach other people but in an unusual way, paying little or no attention to the responses they evoke. Many children do not like being cuddled.

3) Restricted range of activities and interests: Many children with autism lack imagination. They seem disinterested in 'pretend play' such as imitating grownups, playing with dolls, playing 'house-house', etc. They have a tendency to focus on minor or insignificant things around them, for example, a ring rather than the person wearing it, or a wheel instead of the whole toy car. The child with autism tends to be rigid and gets involved in only a few things that interest them. A young child can be upset by minor changes in the arrangement of furniture in the house. There may be an attachment to strange objects such as keys or pebbles. Peculiar mannerisms such as hand-clapping, finger flicking and rocking movements of the whole body may be seen. Such repetitive behaviours are known as stereotypies. In the older child there may be an insistence on following routines, e.g., taking the same route to school. There may be fascination with moving objects like fans; TV credits at the end of the program and wheels. Some children love to spin objects in play. Verbal stereotypies include repetition of words or phrases often without meaning and out of context. Older children may show excellent rote memory for peculiar types of facts such as bus routes and timings or dates in history, but these are often spoken about incessantly.

Associated features
Other signs often accompany autism besides those described above. In general, the more severe the handicaps, the more associated features are likely to be present. These may include mental retardation, hyperactivity, poor muscle co-ordination and balance, learning disabilities, abnormal sensitivity, convulsions, self-injurious behaviour, such as head banging, or finger-, hand-, or wrist biting and special skills, such as excellent rote memory, music, art, numerical calculations or jigsaw puzzles.

(Part 2 of this article will be printed in the December 2001 issue of Autism Network)
Inviting Applications For The World Youth Exchange Programme

Pravah, a registered non profit organisation, was founded in 1993, by a group of young professionals with a view to influence societal issues. Over the years, they have developed and implemented a number of innovative initiatives promoting life skills development and service learning among young people. Pravah is dedicated to equipping them with skills essential to building sensitivity and responsibility towards the society we live in and developing them into positive change makers of the future. Currently they are working with approximately 3000 school students in NDMC and public schools and 500 college students.

As part of this process, Pravah, in collaboration with Voluntary Service Overseas, UK is undertaking a youth exchange program.

This World Youth Exchange Programme is for young people in the age group of 17-25 years from India and UK. A total of 18 participants, 9 from each country, will live and work together in pairs (1 from each country) for a period of six months: 3 months in UK and 3 months in India. The pairs will stay with the local families and work on community projects in the host countries.

The main objective of the program is to promote international understanding among youth and help them undertake voluntary work, which would be of direct benefit to the host community in both countries. In the process, participants would develop experience and skills, which would enhance their personal and professional potential. They would be provided relevant training and financial support for the exchange programme.

For more information, interested participants can contact:
Pravah Office
15/10, Kalkaji Extension, New Delhi-110019, India
Telephones: 6213918, 6440619

Residential-Cum-Vocational Permanent Living Complex
A Call To Parents
Cdr Arvind Kaushik

ACTION FOR AUTISM (AFA) is a parent-driven organisation in which parents and professionals work together to provide support and services to enable people with Autism grow to their full potential. AFA's primary objective is being achieved since its inception through various activities undertaken by AFA. These include:

Creating awareness about autism, propagating methods of specialised education, sensitising teachers, empowering parents, providing counseling, giving home-based management programs, giving lectures and practical training workshops that are devoid of jargon, bringing out an informative magazine Autism Network, creating affiliations with other autism organisations within India and abroad, effecting legislation, and working to set up residences for persons with autism that will deal with the concern of parents: " What after us? "

In the last few years AFA has succeeded in changing considerably the environment and circumstances with reference to autism in our country and society. Although that "Autism -
the Disability" needs special care and support is being projected by AFA in all national forum, the required support and critical needs of the Autistic persons and their families are not being given due consideration by the Government or other authorities involved in the disability sector.

In a few years the National Centre for Autism is to come up in New Delhi. A few teething problems, which are very common in our country, are being resolved. At the same time however AFA wants to give priority to the setting up of a Residential-cum-Vocational Permanent Living Complex for our children and their families. The plans for the above complex and integrated facilities are at present at a stage of infancy but it is taking shape and form very fast.

The Parent Support Group of Delhi has been involved in the modalities of setting up the complex. However of the large number of parents currently based in Delhi, many are still not involved in this initiative. Of course parents outside Delhi too are welcome to join in this endeavour.

AFA is looking for more active and dynamic support of parents and families who are involved for the care and support of their children with Autism. More participation and involvement in AFA, and developing a feeling of belonging can achieve this. This will lead all of us collectively to achieve our stated objectives, in particular the residential centre, which will ensure that our children and we too can live a satisfied and comfortable life.

 

The Body & Learning: A Focus on Autism
Venue: Committee Room No. 2, India International Centre, Max Mueller Marg, New Delhi-110003

Date: Tuesday 11 September, 2001 Time: 9 a.m. - 1 p.m.

Action for Autism (AFA) takes the pleasure in announcing a special workshop by Lisbeth Gahrn.

Lisbeth Gahrn is an Occupational Therapist who is now based in Spain. Lisbeth's initial training was in Denmark as a kindergarten teacher. She then trained as an Occupational Therapist and later as a Special Educator. As an Occupational Therapist Lisbeth has trained in The Alexander Principle and in Kinetics.

Lisbeth has worked with children, youngsters, and adults with learning disabilities as well as with autism and has had some remarkable results with children with autism that she will share with us. She has, in addition, worked for many years in a residential set up for persons with disabilities.

Lisbeth has combined her training with her many years of experience and devised her own system for use with children with autism. For many years she worked as a team along with Bente Gad Johansen, who many of us are familiar with, providing education and occupational therapy. At her workshop Lisbeth aims to provide practical suggestions. She will cover two broad issues:

o Understanding how the body functions so as to enable children to relax muscle-tension.

o Demonstrating the use of simple exercises to teach youngsters to cooperate in small groups so as to develop an awareness of their bodies and thereby gain greater confidence in their own capacity.

The workshop is open to parents, professionals and anyone interested in learning practical and effective teaching strategies for children with autism.

Registration Fee:
o Rs.400/- for each participant
o Rs.250/- for Annual and Life Members of AFA

For more information contact:
Action for Autism,
T 370 F Chiragh Gaon, 3rd Floor, New Delhi - 110017 India
Tel: 6416469/ 70 Email: autism@vsnl.com

Helpline

Q. On our road we have a family whose son is suffering from Autism. To us, autism was not known but his father made us aware of it and ever since I have been reading about this with a view to helping, as much as I can. I would like to give you my observations of the child seeking, thereby, your guidance to know how to deal with such children. This eight year old boy called P is 'jumpy', he cannot stay still for a moment and neither can he be held down. It's just running and jumping about. Yet, if he is held down and is asked to read something, be it English or Gujarati, he just looks at the sentence in a flash, turns his head away and says the correct sentence out aloud , difficult though it may be. It's just amazing!

Another observation is that whatever he gets his hands on he bangs hard and is ready to break it up to see what is beneath or within it. Any new room, unknown to him, as is our place that he is just coming into, seems to invite discovery, but, he just gives a quick glance around in wonder and seems to take in, again in flash, all that he has seen, and then he goes for one object to experiment with. He seems to recognise me, now that he has come here often, but except for the first moment that he gives a smile of recognition, after that he is not bothered about my presence and prefers his freedom of running about. I am sending these observations with the hope that we will all be able to bring out the best in the child.

A. It was a pleasure to read your letter. Your concern for the child in your neighbourhood, your ability to pick out his strengths and look at him so positively, not letting his challenging behaviours get in the way of your seeing him as a child with possibilities and your initiative and proactiveness in doing all you can to help him grow is truly heartwarming. We would feel very privileged to help you in any way we can.

Autism as you may know is a developmental disorder, affecting the communication and social skills of a child. Unlike mental retardation, children with autism typically show an uneven profile of skill levels, that can vary greatly from child to child. P seems to have excellent cognitive skills, given that he has learnt to read so early, and probably has very good spatial skills. However as you have noted he has great difficulty in even the most basic social interactions. This is his challenge, and the area he needs the most help in.

Like all of us, P will learn best in a positive encouraging environment, structured to his needs, and using his strengths and interest areas. Praise and encourage even the smallest efforts in those skills that you want him to become stronger in, and ignore or pay very low attention to behaviours that you want to discourage.

So when greeting him, bring yourself to his eye level, or bring objects that he is interested in close to your eyes, and the moment you get eye contact, tell him very enthusiastically how much you love it when he looks into your eyes. Be different and exciting every time. You could model an appropriate greeting as well. When you want to have focussed interaction with him, try and structure the environment - so that there are not many distractions around, and it is easy for you to get him to look at you, and pay attention to you. So keep the table empty of everything but the book or toy you want to share with him, have him seated against a wall maybe, make sure there aren't objects around that he would rather be exploring.

If you plan to work with him regularly, you could maybe ask his parents to set aside a room that is structured in this manner. A big mirror to encourage body awareness, imitation skills and increase opportunities for eye contact, a high shelf to keep things that you want him to ask you for, perhaps a table and chair and neutral uncluttered walls and floor would be helpful.

Q. I have a worry about a niece of my husband's who is 18 months old. She is a beautiful child but I see symptoms that I have seen before. I help part time in a school for children with behavioural problems and have helped with children with autism. Little S shows a lot of the same traits as in other children with autism. I know that time is a great benefit on the road to helping in problems like this. However, I cannot find a way to tell my family of my fears. Should I leave things until someone of the medical profession notices? Please help.

A. Since you know about autism you are also aware that the earlier a child receives help the better the prognosis. I dont think you want to wait for the family to happen to meet a medical professional who will then inform them of their child's condition. Many parents lose precious years of their child's life for the same reason.

You are in a difficult situation. I think what you could do is leave some literature around that lists some of the traits your niece exhibits so that they come to her parents notice. Maybe a list of behaviours that are the red flag for an autism diagnosis.

Could you not talk to your husband about it and share your concern? Since it it his family he might have a better idea how to deal with the parents.

Whatever you do - just do it. The parents might find it hard to forgive you for it now, thats understandable, but in a few years they wil be grateful for the years you saved them. In addition, check to see if your area has a helpline run by a local society that could guide you.

Letters to the Editor

I have attended your workshop at Mumbai with some of the parents whose children come to me for speech therapy. I want to sincerely thank you for giving all of us such an opportunity to learn about autism at such short time. The seminar was very useful containing lots of tips which are going to come handy while dealing with kids. Your lecture on acceptance was very moving, as much relevant to everyday life as to autism.

I am happy to inform you that we have established a parent support group around New Bombay with help and guidance from Ms Beena Modak. We are trying to establish a library.

SHUBHANGI AULUCK
Mumbai

As a mother of an autistic child who is over three years old I have my own share of challenges and victories. I don't claim to be perfect in the way I am dealing with life but I would still like to share some thoughts with you all. Maybe, just maybe, my way of thinking helps anyone out who needs some positive thinking.

First of all, PROBLEM is not the word or should not be the word, when you deal with your child, CHALLENGE is. Remember all our dreams about having an adventurous life, a life full of challenges. Well God has given us one such life, through our child. The nature and intensity of the challenge is however different for every one of us. Each and every day although much the same, is however somewhat different as our child may or may not show any progress and we don't know what lies ahead.

Every day we are working on our children, sometimes without any positive outcome and getting frustrated and some times being happy at their progress. But we have to understand that our society is severely autistic and mentally retarded. It does not understand and accept any change easily. So it's our duty to make this society understand our child's needs. Don't expect others to be helpful as every one today is facing a difficult life in some way or other.

Please, for your child's sake don't be shy of public places. The more you cut yourself from society, the more difficult it will be for you to make others aware of your child's condition. This will also minimize interaction of your child and society, which is very important in dealing with autistic children. Most of the parents keep trying to send their children to normal schools till their hopes have faded. Please stop humiliating yourself and your child again and again. If your child is going to school then make sure he/she completely understands whatever is being taught. Don't leave your child's education on his or her remembering capacity. If you have not been able to get your child in a school don't panic. First observe and make note of his or her hobbies or the activities they are most interested in, and then try and make out a way to develop their skills. For example, if your child likes dance and has a good sense of rhythm then when they grow up a little they can be sent to a good dance academy.

Meanwhile make sure to take your child to shops and the bank whenever you go there. Do the calculations in front of your child and involve him in money transactions. Ignore other people, as you are teaching your child one of the valuable lessons of life, you don't have to be ashamed of anything.

Most of the autistic children don't pretend play. Well don't wait for them to do so. Initiate and show your child how to play. For instance, if your child loves airplanes then make noises and run the plane in front of him. Or if your child loves dolls then dress up the doll in different cloths, give bath to the doll and anything you can think of. While doing these activities involve your child in the play. At first your child may not be very keen in joining you but if you keep doing these activities, your child will also start doing these and will also do some thing new he or she observes.

Don't be reluctant in showing anger to your child if they are wrong. But showing anger does not mean slapping or screaming. In firm and angry low tone repeat to them where they have gone wrong and what they should actually do. Remember none of the activities written above will bring out a sudden change in your child. You have to go on and keep repeating these and more activities to help your child. Please feel free to respond. I am enclosing my contact details:

S. MUKHERJEE
Jr-71, Hindalco Colony, Renukoot U.P 231217
EMAIL: smukherjee@adityabirla.com

I am the father of a 4 year old autistic boy. Thank you for the help and attention. I would like to add that your organization is doing good work. As a parent I really appreciate the efforts you people are putting in.

S S MAZUMDAR
Bangalore

Announcements
YOU CAN HELP
Action for Autism is looking for land/ property
to set up a residence for young adults.
If you can help in any way, do contact us at:

Action for Autism
T 370 F Chiragh Gaon, 3rd Floor, New Delhi - 110017
Tel: 6416469/70 Email: autism@vsnl.com