N E T W O R K

August 2003 Vol. , No. 2

 

Page One

Understanding and changing human behaviour, commonly referred to as behaviour modification, has applications in every sphere of life. However, it's use is of particular relevance in the field of special education. Unfortunately, behaviour modification is often viewed in a fairly inappropriate light such as: "When a child is behaving 'badly' give him a timeout by making him face the wall," and "Reward them when they are 'good', punish them when they are 'bad'." It is from such a simplistic understanding that comments such as: "Why can't you slap 'these children' when they are being 'bad.' When my daughter is naughty I slap her." Much of the terminology used as well as the misapplication of behaviour modification stems from common perceptions of what reward and punishment are about rather than on an understanding of the principles of applied behaviour analysis and operant conditioning.

In the last issue of Autism Network we had carried the first of a series of articles on the understanding and application of Verbal Behaviour, a therapy that is founded on sound principles of Behaviour Analysis and one that is being increasingly and widely used. In continuation of the series this issue carries an introduction to Applied Behavior Analysis, and its application in children with Autism.

We are pleased to carry a first person account from Stephen Shore for publication in this issue. Individuals like Stephen provide insights, into the life of a person with autism, that those of us who are neurologically typical never can.

Suddenly Autism is the flavour of the month. Tamana is organising an international conference. AFA has its series of workshops including a long planned one with Rita Jordan, coming up. And most interestingly the NIMH has a major workshop planned in November. As a run up to this, NIMH arranged a two-day 'Meeting of Professional Working Group' on Autism Spectrum Disorders at Secunderbad in July. The meeting was attended by nearly 20 organisations from around the country.

In addition Dr L Govinda Rao, Director, Dr Om Sai Ramesh, and Dr Amarjyoti Persha among others from NIMH also participated. NIMH's stated objective for the meeting was to offer a common platform for professionals working in the field of ASD to exchange and enhance professional expertise, and to draw a road map for future directions for assessment, management and research in the field.

The first day's session, moderated by Dr L Govinda Rao, was one of sharing experiences, activities and perceived strengths of organizations that were represented. On the second day, based on their strengths as well as their areas of interest, organizations were divided into five groups for focused discussions on issues ranging from early detection, early intervention, and medical issues to educational practices, vocational and employment issues, advocacy and family issues. The results of the group discussions were presented later in the day and provided information for future direction in management and research.

The highlight of the event was the opportunity to meet a large body of like-minded individuals, working in the area of autism spectrum disorders, and to be able to exchange information and ideas with them. It was an indication of the small but significant distance the autism movement in India has travelled.

Announcing the launch of:
Autism India Network
A National Federation of Autism Specific Organisations

Though there are over two million persons with Autism Spectrum Disorders (ASDs) in India, awareness of the disorder is even now limited, and services are few and far between. Persons with autism still have very far to go before they are able to access the same benefits and opportunities as other individuals with disabilities. Despite that, in recent years, there has been progress. Perhaps the most significant development has been the rise in the number of organizations focused on ASDs, each doing excellent work in their areas of the country.

However, the voices of these organisations and the families they represent are fragmented. There is a pressing need for these voices to be unified. To address this situation a core group of organizations in Bangalore, Chennai, Delhi, Mumbai, and Kolkata have taken the initiative to set up the Autism India Network, being launched on Independence Day, 15 August 2003. This federation of autism-specific organizations is the culmination of efforts of over a year. The role of Autism India Network will be to advocate for the rights of persons with autism with the power of one voice. By working together, we will at last begin to move toward major improvements in the rights for people with autism in the country. Autism India Network will have its first post-launch meeting on 5 September 2003 to invite more organizations to join in and to discuss issues to be taken up by the federation.

There could perhaps be no better day to launch Autism India Network, formed to strive for the rights of this neglected community, than the day when our nation attained independence.

An Introduction to Concepts and Principles of Applied Behavior Analysis, and its Application in Behavior Modification and Education of Children with Autism

Ann Jose Varavukala

What is it that drives us to do the things we do, or say the things we say? If we knew the answer to this - we would have the key to knowing how to control our actions and words. We would know how to increase the frequency of our doing things we think we ought to do, and reduce the occasions when we do things that are harmful to us. The benefits of this knowledge would span practically every aspect of our lives like better civic sense, increasing performance at our places of work, better control of personal habits for health and fitness to mention just a few.

Within the context of education and education of children with autism in particular it would lead to knowing how to increase the frequency of those behaviors that lead to increased learning and independence, and reducing the occurrence of those behaviors that lead to being excluded from the mainstream. For example we would want to know how we could increase eye contact, appropriate language use, social interaction, willingness to wait for a turn, be an enthusiastic pupil, increase academic learning - the list is endless. Similarly we want to know how to effectively reduce inappropriate behaviors like tantrumming, hitting, self-injury, toilet accidents, self stimulatory behaviors like spinning, lining blocks etc. The field of Applied Behavior Analysis (ABA) addresses precisely these issues, and has yielded many solutions that can be of enormous help to all of us involved in the nurture and education of children with autism.

To benefit from this knowledge, it is necessary to have a basic understanding of some terminology and principles. This will enable us to work out effective methods of resolving novel situations that are tailored to the needs and characteristics of each individual child, instead of resorting to cook book methods, which may not be effective in specific situations.

What does the term 'Behavior' encompass?
Within the field of ABA, a Behavior is anything we say or do - for example eating, talking, walking, crying, reading or listening. Behavior Analysis has established that Behaviors of all living creatures are not whimsical or arbitrary, but subject to universal laws.

Some behaviors are inherently strong because they have led to the survival of our species during the process of evolution. Thus a baby's sucking reflex, or a tendency to flee or retaliate when faced with aggression do not need any prior exposure.

However most behaviors that we normally do from the most simple to the most complex, are learnt, established and strengthened only if the behavior is followed reliably by a consequence that the person (or organism) finds rewarding. This process is called Operant Conditioning. Thus the range of behaviors that all of us exhibit, have been learnt because in the past they have been followed by a reinforcing consequence. The key therefore to establishing a new behavior or decreasing an established behavior lies in the consequence.

Let us look at a few examples of Operant Conditioning. A child who is surrounded by adults who show approval for the times she has helped her sibling, is more likely to do so again, than if her action went unnoticed or was subject to teasing. If I try and succeed in getting my car to start on a cold winter morning by using the choke, I am likely to do so again in the future in a similar situation. A child who is accustomed to having her way when she throws a tantrum is likely to continue to do so in the future. A tendency to have a cup of tea when tired, has been established because in the past, having the cup of tea has led to a feeling of being refreshed.

Conversely if a Behavior is followed reliably by an unpleasant consequence - we are less likely to repeat that behavior. We have all learnt to avoid touching a hot vessel with our bare hands, or avoiding eating over-ripe or stale food through this process.

Thus a consequence depending on whether it leads to an improving or worsening condition for the individual exhibiting the behavior can either increase or decrease the probability of the behavior being repeated in the future under similar circumstances.

A consequence that immediately follows a Behavior and strengthens it is called a Reinforcement. A consequence that leads to a weakening of a Behavior is called a Punishment.

Within the context of Behavior Analysis, the term Punishment merely refers to consequences that reduce behavior and does not necessarily have the usual negative connotations associated with it. For example if I am an outgoing extroverted kind of person, an opportunity to meet with new people is likely to be a reinforcement for me and I am likely to repeat activities that give me such opportunities. However if I am reclusive and socially withdrawn, I am likely to avoid activities that bring me into very social situations, and thus the same consequence can act as a punishment for me.

The process of Operant Conditioning is subject to further refinement. If a specific Behavior is followed by reinforcement only in the presence of a particular prior stimulus or Antecedent, the Behavior is likely to be evoked whenever the particular Antecedent is present, and not evoked when the antecedent is absent. Such an antecedent is called a Discriminative Stimulus or SD.

For example the behavior of putting on the fan when I feel hot, is reinforced by the subsequent relief, but needs the antecedent of a fan switch.

Similarly if one parent tends to give in to a child's whining, while the other parent ignores it, the first parent may become an SD for whining behavior and evoke it, while the whining may seldom occur in the presence of the other parent. The reinforcement in this case is the first parent's delivery of the reinforcement that the child was whining for.

Academic learning in particular is a process of learning to exhibit a particular response or behavior for specific antecedents. For example a child learning the word 'car' as a label for all cars, is learning to exhibit the behavior of saying 'car' when he sees a picture, model or real example of a car, and not saying 'car' when he sees something else. In other words, the class of all cars and representations of cars have become an SD for the behavior of saying 'car'.

There is another variable that comes into play, which Behaviorists call Establishing Operation( EO) or motivating power of the reinforcement. Motivation is by nature transitory. When we are satiated with a particular reinforcement, motivation for that reinforcement becomes low, and therefore we will stop exhibiting behaviors that yield that reinforcement. Conversely when deprived of a particular reinforcement, the motivation or EO for that reinforcement becomes high, and all behaviors that will yield that specific reinforcement will increase.

This is best seen with an example. When hungry, hunger evokes all behaviors that are likely to get food - such as an infant crying, a child asking for food, an adult looking for food, preparing a meal, going to a restaurant and ordering a meal etc. Hunger then is the Establishing Operation, which makes the reinforcement of food valuable, and evokes all food producing behaviors. However hunger by itself does not signal the availability of food. It is the antecedent stimuli in the environment - perhaps the sight of the mother, or the lunch bell, or the sight of a restaurant, etc which signal the availability of food, and determine the specific behavior that results in the successful obtainment of food.

Similarly consider a child responding to a question asked in class. The antecedent - would be the teacher asking the question, the behavior would be the child raising his hand and answering, the consequence - would be attention from the teacher - possible praise, and the Establishing Operation - would be the child's need to feel approved.

So to increase or decrease the rate of a behavior we need to focus on the Antecedent, the Consequence that is maintaining that behavior and the Establishing Operation.

Manipulating Antecedents
It is important to remember that antecedents do not control behavior - it is the reinforcement that does that. So manipulating antecedents set the stage for behavior modification, but unless accompanied by reinforcement manipulation are not likely to succeed. Generally speaking, most procedures that are included in that oft repeated phrase in autism therapy, 'Structuring the Environment' fall into this category. Thus setting up schedule boards that act as cues, reducing distractions in the environment, attractive packaging of products, reminders etc. all function as antecedent manipulation. WHEN you want to reduce a behavior, removing antecedents for the behavior if possible is a sensible way to start. When trying to lose weight, removing all junk food in the house and stocking up on healthy alternatives is an example of antecedent manipulation. Or for a child who has is in the habit of cutting up his books with scissors, keeping scissors out of reach and only allowing supervised access would be immediately effective in reducing the behavior. This may not always be possible. In the example given earlier, a parent who has become an SD for whining, cannot feasibly remove himself from the child's life, just to eliminate the child's whining. Instead if he or she, no longer delivered the child's reinforcement when the child whined, they would cease to be an SD for whining.

Manipulating the Establishing Operation
This is done through a process of either satiation or deprivation. If we want to decrease a behavior, and have accurately identified the reinforcement maintaining it, then satiation with the reinforcement, (only when the behavior is absent) will immediately bring about a reduction in the behavior. For example if a child's tantrumming or self injurious behavior has been clearly identified as being reinforced and maintained by attention, then flooding the child with a lot of attention, when tantrumming or self injurious behavior is absent should bring about a reduction in the target behavior.

The second part - i.e. not providing the reinforcement of attention for the inappropriate behavior is crucial, otherwise we will not accomplish our objective. If I am likely to snack on junk food in the canteen every morning in the office, then having a filling but healthy breakfast at home would be a way of manipulating the establishing operation of hunger.

On the other hand if we want to increase behaviors, we need to first identify a strong reinforcement. Then under conditions of deprivation of that reinforcement, deliver the reinforcement only on the display of the target behavior (or a close approximation of that behavior if the skills or the behavior are not yet present.) For example for a language handicapped child, it makes sense to focus on getting him or her to say or sign words for the reinforcements in the environment that they want most, when they want it, and to deliver the reinforcement as soon as they have made their best possible approximation to it. Similarly if we plan to use food or access to TV as reinforcement during a teaching session, it makes sense to do so, when they have not had it for some time. Also deliver small quantities of it at a time, so that they do not get satiated too soon.

Manipulating Consequence
From a Behavioral standpoint it is Reinforcement that holds the key to bringing a long lasting change to the challenges we face when we teach children with autism - both to reduce challenging behaviors and to teach new skills.

For Behaviors that we want to reduce, we need to first identify the reinforcement that is maintaining the Behavior, and manipulate its availability so that the child is less likely to repeat the behavior in the future. The process of reducing behaviors by withholding the reinforcement that maintained the behavior in the past is called Extinction. The reinforcement maintaining the behavior is not always obvious and not necessarily the same for the same behavior across different individuals and different situations. So one child may hit out and bite others because of all the attention he gets as a consequence, while another child may be doing so to get out of an aversive teaching session. Or one child may fling things out of the window, because of the visual or auditory stimulation he gets out of watching and hearing things fall, while another may enjoy watching his mother get into a flap every time he does so. To efficiently bring about a reduction in the target behavior it is necessary to know the function of the behavior and then choose the intervention accordingly, and not simply base the intervention on the form of the behavior. Thus in the first example where attention is maintaining the inappropriate behavior, we need to make sure that attention no longer follows the display of the behavior. But for the second child where escape from the teaching session was what was maintaining the behavior, we need to focus our attention there and firstly make sure that the behavior does not lead to termination of the teaching session. Simultaneously we must also look at ways of making the teaching session more reinforcing.

A more detailed examination of the Functional Analysis of challenging behaviors, and a discussion of the various optimal intervention strategies will have to wait for a later article.

A child with autism who is obsessed with spinning objects, or lining blocks, or looking at pictures of trains is deriving reinforcement for his behavior from these objects, and we may need to exploit this if more conventional forms of reinforcement like social praise are not effective enough. Some consequences are universally reinforcing or aversive - food or pain for example. But many will vary from individual to individual - and also for an individual from moment to moment. Thus while peer recognition and praise is a strong reinforcement for most people, for a child who has problems understanding social cues like a child with autism, it may not be a sufficiently effective reinforcement. By pairing social praise with tangible reinforcements like access to the TV, or a favorite cookie, or the opportunity to spin a plate, we can gradually increase the value of social praise, so that ultimately the child learns from the environment in a more natural way.

At a point in time several sources of potential reinforcement may be available to a person, and the person is likely to perform those behaviors that will yield the most quantity and quality of reinforcement for the least effort. The Matching Law1 demonstrates that this relationship between concurrently available schedules of reinforcement and exhibited behavior is extremely precise.

Consider a child in a teaching situation for whom peer recognition or social praise are not sufficiently strong reinforcement. If tantrumming is going to lead to escape from the teaching situation, while responding to the teacher's queries is going to lead to at best a nod of assent, and possibly more work, escape may prove to be a far stronger reinforcement. He is therefore likely to chose to tantrum to get the more valuable reinforcement rather than respond to the teaching situation. A successful teaching situation will be one which will take into account these factors and provide a denser and more valuable schedule of reinforcement within the teaching situation than what is available outside.

Reinforcement is most effective in increasing a Behavior when it:

1. Immediately follows the occurrence of the Behavior. The longer the delay between the delivery of the reinforcement and the occurrence of the Behavior, the weaker the impact of reinforcement in strengthening that behavior. For example if you cook a special meal, but your family tells you it was delicious a week after they ate it, it will have a far lesser impact on you, than if they were to tell you so as soon as they tasted it. When teaching a new skill we need to make sure the child gets frequent and effectively timed reinforcement for every close approximation to the skill.

2. Is of a sufficiently large intensity or value as to be attractive to the person or organism performing the Behavior. Thus an enthusiastic 'Wow! You got it!' followed by a hug or a tasty tidbit for correct responding to a query may be reinforcing for a child, while a curt nod of the head may not.

3. Is contingent on the Behavior i.e the reinforcement is available only when the Behavior occurs and absent otherwise. Assuming that you are a music fan, the behavior of tuning in to MTV to catch the latest song, is weakened, because many other channels also play hit songs. If instead MTV was the only channel airing the latest musical hits, you would be likely to tune into MTV frequently. If you plan on using access to TV as a reinforcement for chores completed, it will be effective only if the child does not get access to TV when he or she does not do her chores, and gets it when the chores are done.

4. The Establishing Operation effects the value of the Reinforcement. So if food is the reinforcement for a behavior, the Establishing Operation is hunger, and depending on how satiated or starved you feel, food will be an effective or ineffective reinforcement.

5. The reinforcement available for the Behavior is more valuable than other concurrently available reinforcements for alternate behaviors. So the reinforcement you offer during your teaching session needs to be what the child wants more than anything else.

6. The effort required to carry out the behavior is not so much that the value of the reinforcement is lost. For example, a child who has difficulty recalling words, may not respond to a query, asking him to label something in the environment, even when reinforcements are available, but may do so more readily if taught the sign for it, or given a mnemonic prompt - making the task easier.

When trying to teach, we must try and provide a range of frequent and valuable reinforcement for appropriate responding, provide many opportunities for correct responding by giving a mix of easy and hard tasks, give maximal prompts for hard tasks, mix and vary tasks to avoid stagnation. We must try to become strategic scientists like B.F. Skinner suggested, constantly analysing how we can make the tasks we want the student to do more reinforcing, and looking at how we can reduce errors and inappropriate behaviors. Understanding the principles that control Behavior will help us get a useful objective perspective to the challenges we face while educating children with autism.

The principles discussed in this article, are applicable to the manipulation of any behavior - not just those of the children with autism who touch our lives.

In particular they can be put to good use to change our own behavior, so that we become more effective as parents, therapists, friends, spouses, human beings - which is the ultimate goal of Behavior Analysis.

1 Matching Theory In Natural Human Environments. J.J. McDowell The Behavior Analyst. - A mathematical account of Behavior that asserts that behavior is distributed across concurrently available response alternatives in the same proportion that reinforcement is distributed across those alternatives.

My Life With Autism: Implications for Educators

By Stephen Shore

Stephen is completing his doctoral degree in Special Education at Boston University, works with people on the autism spectrum, as well as consulting and presenting world wide on the autism spectrum.

He is the author of 'Beyond the wall: Personal Experiences with Autism and Asperger Syndrome'. Here Stephen shares his experience of growing up with autism and offers unique insights on what teachers and parents can do to enable autistic children to succeed in school and life. The book is available at his website: www.autismasperger.info.

The Autism Bomb and Preschool
After 18 months of normal development, I was hit with the "autism bomb," became nonverbal, and was diagnosed with "Atypical development with strong autistic tendencies and psychotic." The diagnosing professionals considered me "too sick" to be treated on an outpatient basis and recommended that I be institutionalized. However, my parents, refuting their suggestions, supplied a crucial, home-based early intervention program emphasizing sensory integration, music, movement, imitation and narration - all long before such service was formally conceived.

My mother would try to get me to imitate her, but to no avail. Finally, she imitated me; and in doing so, I became aware of all within my environment. The educational implication of this strategy is the importance of meeting the student (whether on the autism spectrum or not) where they are cognitively and developmentally before new material can be learned. If that means flapping and rocking with the child until they are aware of your presence, then that is what should be done before moving on to other material. My parents had no psychological or educational experience, but just did what good parents needed to do for their child. Although I didn't start to regain verbal skills until age four, with the help from my parents and later from teachers and professionals, I am now completing my doctoral degree in special education at Boston University, with a focus on helping autistic people develop their capacities to the fullest extent possible.

AT age four, after my parents finally convinced the school that originally recommended I should be institutionalized to accept me, I spent a year there before transitioning to a nursery school program. Unfortunately, entering public school kindergarten at age six was an academic and social disaster. Although I was in regular education, I probably needed a program splitting my time between a special education resource room and regular classroom with assistance from an aide.

Elementary School
During elementary school I was usually almost a grade behind in maths and reading. My first grade teacher told me that I would never be able to learn mathematics - but somehow, I managed to master the subject well enough to teach statistics at the college level. Another teacher informed my astonished parents that I had trouble reading, despite the fact that I was reading the newspaper at home. Unlike educators of today who focus on autistic students' strengths, my teachers never developed maths and reading lessons based on the foot-high stack of astronomy books on my desk that I read and copied diagrams out of it a furious pace. Socialization was also very difficult due to the teasing and bullying of children that are different that occurs in the public schools. Fortunately, educational professionals now realize that bullying is a behavior not to be tolerated, as opposed to a developmental phase that children need to go through or experience.

Improperly understood, sensory integration dysfunction can severely impede functioning in a classroom. For example, visual sensitivity to fluorescent lights can make them appear like strobe lights to a person with autism, creating an unsuitable environment for learning. An elementary- school child in this situation may very well get out their seat to shut off this sourceof sensory over load that, in addition to being a distraction, may cause physical pain. I have seen the eyes of people of those with sensory sensitivities vibrate in synchrony with the 60 H z. cycling of fluorescent lighting. The teacher, who is unaware of the student' s condition may interpret this "out of seat" activity as an avoidance behavior . However, in reality, this behavior is an attempt to eliminate a sensory assault that interferes with functioning in class . Alternatively, a child, more severely affected by autism, w ho is nonverbal and less aware of the source of her sensory overload, may simply have a tantrum.

Another challenge for many students with high-functioning autism and Asperger Syndrome is literal interpretation of language. For example, in the fourth grade I had a friend who told me that he "felt like a pizza." Unable to understand the idiom, I thought that he meant that he looked like a pizza and I tried to assure him that he didn't smell nor look like this popular American food. Many years later in college, while ruminating about this event, I finally understood that he felt like eating a pizza.

Middle And High School
Middle and high school often over whelm children on the autism spectrum due to the increasing complexity of interpersonal relationships, homework, and the act of transitioning between classrooms for different courses. Students begin dating and there is increased emphasis on conformity. Homework requirements from multiple courses demand proper allocation of time. For those with visual- perceptual challenges, getting from one classroom to another can be like walking through a maze. Some accommodations for these children include working with an aide for social interaction skills.

Keeping a schedule, detailing times and location of classes , as well as due dates, for assignments can help with getting students to classes and completing homework on time. The act of writing as well as converting verbal information into words on paper during a lecture is also a significant challenge. Providing outlines and class notes are especially helpful, as they allow the student to focus on processing the subject matter rather than frantically writing down what is said in the lecture or copying over heads. In fact, to me, accommodations are just extensions of good teaching practice. All students can benefit from having a topical outline and class notes.

Fortunately, for me, middle and high school was actually better than elementary because I was allowed to specialize in my favorite interests of music and bicycles. Middle and high school student organizations can provide a place where a child on the autism spectrum can use their special interests to base their interactions with their classmates. For example, I spent much time in the band room and started a bicycle club with much success. My grades improved dramatically because I finally figured out what teachers wanted from me in terms of schoolwork. In addition, getting along with other students became easier because I realized that socialization using words, rather than sound effects from the environment was more efficient in communicating with other students. However there was still a degree of bullying. For me, a social aide during elementary school would have helped greatly in understanding my teachers' expectations for quality school work and meaningful interactions with my classmates.

College
College, like for many people with high functioning autism and Asperger Syndrome, was a sort of utopia. Gone was the ostracizing from the public school cliches for failing to fit into what they determined as popular. Instead I found people with similar interests. For example, if I wanted to ride my bicycle at midnight, I could usually find another person in this 25,000-student university to ride with me. Students interacted for the pleasure of exchanging ideas and enjoying each other's company rather than how "well" someone fit in.

Life Beyond School
At this time, I teach college-level special education courses where I incorporate my personal experiences to help future teachers of people with autism and other special needs. Finally, I serve on the board of directors for several national organizations pertaining to autism such as the Autism Society of America, Unlocking Autism, Asperger Syndrome Coalition of the United States, and as Board President of the Asperger's Association of New England. In addition, I work with people on the autism spectrum using music and computers. Depending on the severity of the autism, music may be used to develop skills in socialization and communication, as well as gross and fine motor control. Or, as outlined in detail in my book, 'Beyond The Wall', I may actually teach them how to play an instrument. In addition to working on motor and breath control, the child benefits greatly from having a skill that can serve as an avenue for socialization.

Ongoing Educational Challenges
Some challenges that remain from my childhood diagnosis of autism include accurate reading of nonverbal communication, subtle social situations such as office politics, and facial recognition. It is difficult for me to remember the faces of my students in class so I take attendance at the beginning of every session in order to match the name to the face of the person who answers. Additionally, taking notes in fast-paced lectures remains a significant challenge. Instead of spending a lot of time and energy improving my note-taking with only marginal results, I devise my own accommodations, such as recording the lecture, typing the lecture notes into a laptop, asking to see another student's notes, or even asking the teacher for his or her lecture notes.

In summary, it is important for educators to realize that due to sensory issues, people who are on the autism spectrum often perceive the environment differently than most others. In addition, long-term prognosis of people diagnosed with autism spectrum disorders is difficult at best. While the effects of autism do not disappear, it is possible through proper early intervention, support and education, leading to self-awareness and accommodation to live successful lives.

The nonverbal, self-abusive, tantrumming toddler may become the child that makes it through public school and high education to become an independent, productive citizen leading a fulfilling life with merely residual outwardly visible effects of the autism spectrum. Finally, as with all humans, the possible achievement of those on the autism spectrum is unlimited. The challenge is finding the key to unlock that potential.

Helpline

Q. My son six-and-a-half years old is suspected to have mild autism and he is also hyperactive and has behavior problems. For this he is going to special education and speech therapy center. His speech was delayed: he used to speak only two to three words but nowadays he is trying to speak sentences. He is able to sing songs, rhymes, stories, TV and Radio jingles. He is academically good and can write A to Z both small and big letters, names of fruits and vegetables, name colours, days of the week, months animals, body parts. He can give his address, his own name, father's and mother's name, and his telephone number. He can count from 1 to 100, say the tables from two to four, and identify 15 international flags.

But he has a problem which we don't know how to solve: since childhood he will have any two plastic things of same size and shape in his two hands. When he was small we had no problem. But when he started going to school we started facing a problem. We have consulted a doctor who prescribed Fludac Syrup for two months. But even then he is carrying the plastic things in his hand. Due to this he is losing his concentration. Kindly advise us what to do to make him forget this habit.

A. We have gone through your letter and have tried to understand the function behind the particular behavior mentioned by you. However it is difficult to analyse the behaviour and give suggestions based on the letter. We will try and respond as best as we can based on the information you have provided.

Your son appears to have learnt various concepts at an early age. According to the information you provide his behaviour of holding objects in his hand has been there for quite sometime. However the behavior does not appear to have interfered in his learning. The difficulty now arises because he is going to school.

You can work towards helping him to stay comfortable without the objects while he is in school. Trying to stop this behaviour suddenly may not work. Instead, let him hold the objects some times. Since he obviously loves holding these objects in this hand you can use them instead as reinforcer for completing tasks given to him. For example, take the objects from him and make him do a task that is simple and easy for him, like clap hands two times, or finish eating one biscuit, and then he can get the objects. If he cries or tantrums do not give them back. Make him complete the task before you give them. If you anticipate that he may 'tantrum', ensure that the task is very short. In this way he learns to stay without the objects for a short time. Gradually increase the time that he stays without the objects.

You can also talk to his teachers and use these objects as rewards for completing his work in class. At the beginning of class he can be encouraged to hand the objects over to the teacher. He will have to be told very clearly that the teacher has the objects and when he completes his work he can have them. In this way in the beginning of the class he gives them to the teacher and gets them on completing his task.

When he goes out for a walk with you, or goes to a park, give him something else to carry that is more appropriate. Like a ball or a shopping bag.

His carrying objects around may have a sensory basis as well. So when he is at home with you and you have some free time, rub different textures: soft, rough, silky, woolly, etc on his palms. You can also use brushes, lotions, talcum powder, a rolling pin (belan) on the palms.

Q. I am an intern for Family Linkages Foundation of Alberta. We are located in Edmonton, Alberta, Canada. I am responsible for developing family support for the organization. My question to your organization is regarding resources in languages other than English. Our families come from many different backgrounds. For some, English is not their first language; therefore, I would like to provide these families with resources they may understand better.

If you have books in Hindi or Punjabi or any other languages I would greatly appreciate information on these.

A. We do not have books in other Indian languages than English, for which we are currently seeking sponsorship. In the meantime the articles in the Hindi section of Autism Network are on subjects such as toilet training, structured teaching, teaching play skills among others and might be useful.

Ed: do any of our readers have any information or suggestions?

Q. The last one week has been the most traumatic one for my husband and myself. We discovered that our first and only child, who seemed so completely normal to us has PDDNOS. It is devastating though we have been trying to let it sink in. It only now occurs to us, that every single task that our beautiful little girl performs on an everyday basis must be painful for her physically and exhausting mentally.

Her therapist said that she is a high functioning PDD child. We hope to God that it can only mean that the best for her is yet to come.

As anxious parents, we have several queries that we would like to bother you with; maybe once too often. We have accepted that God has chosen her in order to bring us closer together as a family and as friends. But we are terrified of what the future holds for her. We also believe that God works through people like yourselves. You are our Angels of Hope. Please help us in any way that you can.

We realise that the early evaluation of her condition and her high functioning are positive signs for her development, but it still leaves us with many fears and apprehensions.

Will P ever lead a normal life in the company of normal people? Will she find peers in school and college who will not pick on her and reduce her selfesteem to dust? Can we find means in which at least her sleep will be restful? Are there any handbooks for daily reference as to how we can handle our dear child? Will reprimanding or removing privileges when she has done something wrong cause her condition to worsen? Can we just be normal with her or does she constantly require our undivided attention?

If her playschool turns her down, is there any hope that she can be brought up with the right conditioning?

Approximately how many months or years of therapy would it take for her to progress in a normal fashion? Well, there are several hundred queries that come to mind as I write to you. Will she ever speak like you or I do? I can not wait for her to tell me that she is hungry or happy or hurting or just anything!

I am sure that I have bombarded you with too many things too suddenly but that is in the hope and belief
that you will support us in this long arduous journey.

A. Receiving a diagnosis of autism for ones child can be a most painful experience. But as we learn to deal with the pain we also begin to accept that though that one moment when we receive the diagnosis seems like the one defining moment in our lives; yet our child after that moment is actually the same child who was there before. Nothing has really changed except the way we view her.

Of course the fact that our child is that bit different from typically developing children with various complex needs means that we have to make adjustments for that difference. Many adjustments. Not merely in our expectations. But also in how we had planned our lives and what we might have to do for her.

Yes life with autism is a very complex situation for any individual to deal with, just as it must be for P. We want to understand that and help her, yet not teach P that hers is a terrible and difficult life. The initial weeks and months after a diagnosis is always a period of confusion and fear - fear of something we do not quite understand. But as our understanding of autism grows that fear and trepidation is overcome and replaced with the knowledge that yes there will be progress. How much progress will vary from child to child and hard to predict, but there will be considerable progress and we will learn to celebrate every step that P takes towards that progress. Because she will be putting in as much effort as any of us.

As parents you will want to learn as much as you can about autism. There are many good books available. Knowledge will lead to the confidence to deal with P in a manner that will be most beneficial for her. There are numerous books you can read up - and the Forum for Autism Mumbai library will help you with that. So will the net. Learn from P's therapist how you can help P and generalize her learning. For instance simply removing privileges may not teach her anything. Whatever you do must be based on sound scientific principles of behaviour modification. Whatever methods you adopt to bring about behavioural changes must make sense to you.

Finally, P may or may not eventually go to a regular school, she may or may not go to college, she may or may not speak like you or I do. But she can be a happy child. And that will depend on us. P will always have autism. Autism cannot be cured. But yes the symptoms are often minimized through early appropriate intervention. So read up on autism, help P have the best learning environment possible, and enjoy her. Despite her diagnosis she is still the P you love.

Wishing you a wonderful journey with your child.

Q. I have read in a magazine entitled 'Vanita' about medicine for autistic children. The article says that autistic children can be cured by that medicine. The name of the medicine was not given in the article. Please advise me about such medicines by which autistic children can be cured.

A. People have experimented with a few drug treatments such as secretin, fenfluramine, megavitamins, tranquilizers, naltrexone and homeopathic alternatives. However there is NOT enough research to substantiate any claims of benefit from these drugs.

At this point we do not know what causes autism and so cannot 'fix' or cure it. However, an approach that has been found to help in all cases is an appropriate training program that is very specific to the child's need. Autism is a life long condition but with appropriate intervention (teaching and training methods) the child can progress to his or her fullest potential.

Q.In the Autism Network Journal: April 2003, Vol. X, No.1, an article named "My son Kartik" was published where Mr. Chandrashekharan described some features and behaviour of his autistic child Kartik. Many of these features and behaviour is similar to that of our son S.

S is an eight year old autistic boy. His sitting habit and attention span is very poor. He also sometimes cries without any reason. But his receptive language is very good and up to the level. He can recognise almost all the household articles either real or in pictures in books or in any other form. In academic side also he is quite developed.

In the above mentioned article Mr. Chandrashekharan wrote that his son is taught Science, Math, Social Studies, and English at Open Door School. So if you can send us the curriculum of Kartik then we can adopt this and can teach our son.

A. We are happy to learn that Mr. Chandrashekharan's article was encouraging for you and that you want to help your son through the same experiences. However we feel that sending Kartik's syllabus or individualised education plan may not be very useful because every child with autism is different. The same concepts have to be taught to a group of children in the same class keeping each child's learning style in view. In addition, the topics to be taught are based on the child's previous as well as current level of knowledge. Along with this it is equally important to be aware of how to teach these topics, what important learning outcomes need to be focussed on and how to generalize the knowledge.

As the entire process requires child specific planning and implementation we suggest that if possible you visit us along with S. Otherwise please send us a detailed mail about S's current level and thereafter we shall try and give some suggestions.

Q.I am a receptionist for 'InterAction', a member organization serving US-based humanitarian organizations with operations overseas. Recently, we received a letter from a doctor in Lahore, Pakistan seeking assistance for his four-year-old daughter with moderate autism. Unfortunately, we are not a funding institution and do not maintain our own programmes abroad. Additionally, our member organizations operating in Pakistan, to which we would otherwise refer him, provide only very basic health care.

Would it be possible for your organization to provide us with an address of an autism support group, or any other relevant resources in Pakistan, so that we can pass this information along to him and his family?

A. We sometimes have families from other countries of the subcontinent visit us for training. One such is a resourceful mother who has been helping other families.

Her contact is: Nazma Neherali: nazmaneherali@yahoo.com

Another person is: Lize Rudwin: lrudwin@yahoo.com. She is based in Pakistan and is trying to facilitate a parent support group.

You could ask your doctor correspondent to contact Nazma or Lize.

Letters to the Editor

I have observed your centre at close quarters and I must appreciate Action For Autism's pioneering work done for autistic children in India. Our country is faced with this newly detected and earlier unheard of disease recently although it existed in our medical textbooks for a long time. A majority of our child specialists are still not aware of this problem and some are coming to know about it recently.

As a doctor and also a parent of such a child I had to face a terrible time when there was misdiagnosis by a doctor even at our premier institute even after I pointed out the possibility of Autism to them.

I am sure your centre will act as an eye-opener to others in this field including medical specialists.
Dr N Atal
DELHI

I am a student of developmental counseling at SNDT University Mumbai. I have just completed a six week internship at Ummeed Child Development Centre. I have heard a lot about AFA. During the course of my internship I interacted with autistic kids and it is here that I really got interested in working with them. At present I have an admit from the University of Newport for an MA in Autism. I am very keen on pursuing this course as I realize that there is a dearth of dedicated professionals working in this field and a need that is urgent and growing. The focus of this course is behavioural intervention more than special educational needs and it is this aspect that I am more interested in.
Parul
Mumbai

I was very pleased to see that your organization is taking such an interest in Autism. I am a therapist/teacher who is trained in program implementation for children with autism. At the center where I work, we use neurodevelopmental therapy as well as some applied behavior analysis. I have worked with children who have been diagnosed with mild to severe autism as well as other developmental disorders. I would like to visit and see your facility. Maybe, we can learn different interventions from one another.
S Vaid
USA

My son is an autistic boy. We contacted AIIMS in December 2002 for a disability certificate. AIIMS informed us that the boy has autism and mentioned it on the prescription, but refused to give a disability certificate. We were told that someone has misused the certificate for autism so they have stopped issuing certificates. If my boy is autistic why can't a certificate be issued? Please help me.
SK Jain
FARIDABAD

I was so pleased and proud to hear of your training venture for teachers in autism. I have a daughter with Asperger's myself, and there are so few trained specialists here in Singapore that I was happy to hear of India taking a pioneering step towards creating a team of trained professionals.
K Kishor
SINGAPORE

I am a Speech Language Pathologist. Your website is very informative and supportive.
SP Bangera
KUWAIT

ABA Therapist Needed
I am contacting you from the Kingdom of Bahrain, Middle East. I need an ABA therapist for my
two year old son. The therapist will be employedfor a two year period.

Above average salary, free accommodation and round trip air tickets will be provided.

Contact Rania: email:info@zakah.biz

AFA Announcements

Dr Amit Sen, Child Psychiatrist...
is available for consultations. For appointments
please call the Action For Autism office.

Sensory Therapy
Alison Cornish is back and will be available
for individual sessions. For information please contact
the Action For Autism office

Action For Autism's New Numbers:
Please note our changed telephone numbers:

Old numbers: 2 6416469, 2 6416470
New numbers: 29256469, 29256470

Autism Parents Support Group, Delhi

The Autism Parents Support Group, Delhi will meet more regularly from the last quarter of this year.

Srilata Kurup will convene meetings which will be arranged along with discussions and counselling on selected topics

For more information contact:
Srilata Kurup: Tel: 26182914

AFA's Diary of
LECTURES, TRAININGS & WORKSHOPS

Sexual Concerns and the Growing Child
CASURINA HALL, INDIA HABITAT CENTRE
September 1, 2003, 6.15 pm

Lecture and Discussion by Dr Achal Bhagat
Awareness of ones body and sexual exploration are a natural part of growing up. All children, whether typically developing or with a disability, go through the same process of exploration, discovery and stimulation. In the Indian context such normal developmental behaviours are often viewed as deviant. And when the child has a disability such behaviour is viewed with extreme prejudice. As a result both educators as well as parents are often confused about how to handle the growing child. Dr Achal Bhagat, is an eminent psychiatrist consulting at the Indraprastha Apollo Hospital, and the Director of Saarthak, an NGO working in the area of mental health. Dr Bhagat will give a talk on an sexual concerns: an issue that affects families across the board but remains rarely discussed.

This will be an opportunity for families and other carers to air their concerns and have them addressed.
o In collaboration with The India Habitat Centre

Neurological Behaviour Aspects of PDDs
CASURINA HALL, INDIA HABITAT CENTRE
October 31, 2003, 6.30 pm

Lecture and Discussion by Dr RK Sabharwal
One third of all persons with a Pervasive Developmental Disorder will have at least one seizure in their lives. Dr RK Sabharwal is an eminent paediatric neurologist, Consutltant Neurologist to The Epilepsy Centre, Holy Family Hospital, Aashlok Hospital and Paediatric Neurologist at Sir Ganga Ram Hospital. Dr Sabharwal sees a wide spectrum of children with PDDs in his practice.
o In collaboration with The India Habitat Centre
The lectures are open to all

Autism Alternative Strategies'
3 - 7 September, New Delhi
o Three day international conference: 3-5 September 2003
o Two day PECS training programme: 6-7 September 2003

Speakers:
Dr Rita Jordan
Dr Gary Mesibov
Dr Richard Mills
Dr Melanie Peter and Dr Dave Sherratt
Dr Tony Attwood
Ms Carol Gray
Ms Amanda Reed and Zena Barton
Dr Shobha Srinath
Ms Mythily Chari, Tamana

Registration:
Conference Fee: Rs 2,500
PECS Training Fee: Rs 1,500

For more information contact:
Tamana Association
D-6 Vasant Vihar, New Delhi 110057
Tel 26142615, Tel/Fax 26143853
Email: tamanassociation@hotmail.com

Annual Training Workshop for Parents & Professionals
INDIAN SOCIAL INSTITUTE, LODI INSTITUTIONAL AREA, NEW DELHI
September 25 - 28, 2003

AFA's annual workshops are an eagerly awaited event each year. The workshops build on an understanding of ASD and work through teaching various cognitive, communication, and daily living skills. The workshops are free of jargon, and illustrated with practical examples based on AFA's hands-on experience and exposure to children with autism of varying ages and across the spectrum. They will follow a format of lectures, a demonstration class, video clips, question and answer sessions and discussions.

Individual consultation for families, at no extra charge is provided on the last day of the workshop. Consultations will be available to those families who book in advance. Childcare will be provided during workshop hours for those who find it difficult to leave their children at home.
Accommodation: Rooms with breakfast from noon of 24 September to noon of 28 September.

Childcare: Childcare is available only to those participants who register in advance. Childcare will not be available to on-the-spot registrants.

For information on registration, accommodation costs, and childcare please fill in the form below and mail with a SASE to:

Action For Autism,
T370F Chirag Dilli, New Delhi 110017,

Or download a form from our website at:
http://www.autism-india.org

Planning and Executing an Educational Curriculum with a Focus on Communication and Behaviours
A Two-day Intensive and Interactive Workshop by Rita Jordan PhD
o Supported by the British Council

INDIA INTERNATIONAL CENTRE, NEW DELHI
December 6 - 7, 2003

Rita Jordon is a reader in Autism studies at 'The University of Birmingham', UK.

DAY ONE: o Special needs of children with Autism Spectrum Disorders o Developing an eclectic Curriculum Inclusion and Autism Spectrum Disorders o Developing communication and language

DAY TWO: o Challenging behaviour and the individual with Autism Spectrum Disorders o Sexual and emotional problems in ASDs

Childcare will be provided during workshop hours for attendees who find it difficult to leave their children at home. Available only to those participants who register in advance. Childcare will not be available to on-the-spot registrants.

Accommodation: Rooms with breakfast from noon of
5 December to noon of 7 December
.
For information on registration, accommodation costs, and childcare costs please fill in the form below and mail with a self addressed stamped envelope to:

Action For Autism, T370F Chirag Dilli, New Delhi 110017,
Or download a form from our website:
http://www.autism-india.org
Other workshops by Dr Rita Jordan

Action For Autism is partnering with other organizations to enable parents and professionals across India have the benefit of attending Dr Rita Jordan's Workshops. There will be a series of training workshops at other centres as well.

These are:
Mumbai
Date: 22 - 23 November 2003
Contact: Chitra Iyer, Forum For Autism,
Email: forumforautism@hotmail.com

Bangalore
Date: 28 November 2003
Contact: Jayashree Ramesh, India Autism Forum
Email:autism@bgl.vsnl.net.in

Kolkata
Date: 2 December 2003
Contact: Indrani Basu, Autism Society West Bengal
Email: indrani basu55@yahoo.co.in

Delhi
Date:6 - 7 December 2003
Contact person: Indu Chaswal, Action For Autism
Email: autism@vsnl.com

MEMBERSHIP TO AFA

To continue to receive 'Autism Network' please complete
the application below and return it to us as soon as possible

Or, become a Member of Action for Autism?
Membership entitles you to concessionary rates for AFA
events, workshops and library membership. You will also
receive 'Autism Network' three times a year. Members are
kept informed of all AFA events and activities.

Membership privileges:
o Parents may become Annual Members at Rs 500/-
or upgrade to Life Membership at Rs 5000/-
o Professionals may avail of Annual Membership
at Rs 1000/-
o Institutions may avail of Annual Membership at Rs 2000/-

Click here for form.