Page One | Structure Using the TEACCH Method | Teaching Numbers | Income Tax Relief U/S 80DD for Parents/Guardians of Persons with Disabilities | Of Workshops, Clinics and the Summer Heat | Alternative Treatments: Auditory Integration Therapy | The Annual Day | Helpline | Letters to the Editor | Thanks

N E T W O R K

August 1999 Vol. VI, No. 2

Page One

Though many children with autism often have high levels of intelligence particularly in mathematical and similar fields, most of them have additional learning difficulties and require specific teaching methods. This issue shares some of the methods that AFA has found effective in working with children with autism.

Additionally, this summer the AFA team had the opportunity of sharing these methods with parents and professionals in Bhuvaneshwar, Calcutta and Siliguri. In our interactions one of the points we tried to make, as strongly as possible, was the need for parents and professinals to work together as closely as possible.

There will always be professionals who will try to guard their 'territory' and set up a wall around the parents they work with, just as there will always be parents who will be overly sensitive and who will find it hard to forgive negative interactions with professionals. But for our children to be truly helped we will all - parents as well as professionls - have to put these behind us and move on. We will also want to remember that not all professionals have exclusive and/or superior mindsets and neither are all parents uninformed rigid people. Parents and professionals HAVE to work together. It is important for all to keep these in mind, and not get focussed on disagreements that short circuit our ability to learn from each other.

We are sorry to see Mr DK Manavalan transferred out of the Ministry of Social Justice and Empowerment. Mr Manavalan has been a committed Secretary, very sympathetic to the cause of the disabled including autism. We hope to receive from Mrs Asha Das, who takes over from Mr Manavalan, the same sympathetic understanding. The Joint Secretary Ms Stuti Kacker, another friend of the disability sector, has also moved on but we are pleased to welcome back Smt Gauri Chatterji.

With very little money, increasing numbers of families wanting help, the handful at AFA careen through the year with not a moment to catch ones breath. Our funding situation continues stretched for reasons that ultimately boil down to the fact that autism is nobody's baby. Autism is the child no one wants. How many poor children are you reaching we are asked? Not as many as we would want to. Why? Because most of
them do not receive a diagnosis yet. Most doctors that they go to are not even aware of autism. But when we want money to do a basic training with doctors none is available. We were on one occasion informed that these are considered a waste of money. As long as this situation continues children from the economically weaker sections will not receive a diagnosis. And will therefore not receive help. It's a catch-22 situation.

Everyone wants instant results. Large numbers reached. And yet common sense tells us it does not work that way. You cannot force large numbers and ensure quality.

To just give an example of when our medical institutes were set up. There are crores of our country people desperately in need of medical services. Yet nobody suggested that annually each medical college must produce 5000 graduates. That unless there was a guarantee, that the poorest of the poor will receive services from these graduates, no money will be allotted to these colleges. It was acknowledged that quality was paramount. And over the years as more doctors have been trained, medical services are percolating to the economically weak.

But we battle on nevertheless. We may not have money. But we have immense satisfaction; the response from families, always our top priority, keeps us charged.

Structure Using the TEACCH Method
Sandra Dawson

In our previous issue, I wrote about my visit and training at Division TEACCH at the University of North Carolina, USA. To recap from that article: TEACCH (Treatment and Education of Autistic and related Communication handicapped CHildren) has been working with people with autism for over 20 years and has developed various strategies of intervention.

The one that they have found the most useful has been STRUCTURE. They have introduced structure into the lives of many people with autism with the goals of communicating with them in a way other than speech, and more importantly, teaching and training them to be independent.

Considering how extremely different our country is from the United States, we have found it more effective to adapt the methods used by TEACCH to our country and then put them into use. We believe that it is better to understand the method in its aim, context and process before using it, rather than just transplanting it from one institution or setting to another, without that understanding. We have also taken into account the fact that many children are taken care of by mothers or if the mothers are working outside the home, even by maids whose primary responsibility is the housework.

Therefore our strategy is only based on the TEACCH approach. For those who are familiar with TEACCH you will notice that we have taken the idea behind the method and have used it as a base for other intervention strategies.

One of the most significant characteristics that makes children with Autism different from other children (even those with other disabilities) is that communication impairments make it difficult for them to learn in the conventional style. Our children are very strong visual learners. This means that they learn better when they see things and they are better able to relate to objects and activities when it is visually clear to them.

But how do we provide this visual clarity? With the use of Structure. Structure provides the child with a visually clear and predictable environment in which the child knows what to expect and what is expected of him. There are three main areas that structure can be used in: a) the physical environment, b) time and c) activities.

Physical Structure
Physically structuring the environment means creating clearly demarcated areas for specified tasks to be performed. Our homes have areas that are often used for two or even more activities. For example, the table is used to eat at, to study at, to cut vegetables on, and to play a game of Ludo. When you call a person and say "sit at the table" the first thing he or she will wonder is…"what are we going to do?" So even if your reason for calling him is not clear he is able to ask. But what if the same request is made from a child with autism? Remember that we have here a person with a communication difficulty, who is not immediately able to ask the very simple question, "What are we going to do?". In his mind a connection has been made between the table and a particular activity. For example, 'the table is to eat at'. He therefore comes to the table expecting food. If he does not get it, there will be confusion, perhaps some crying, or whining, or he may even get up and run off, which is considered difficult behaviour… and we all wonder why?!

Since we know the child has a communication difficulty we want to create an environment that, again, communicates very clearly what is expected from him. Demarcate and specify areas for every activity for your child by arranging the furniture in such a way that each area is separate from the next. Eati only at the table or in one particular place in the house, have toilet jobs only in the pot (be it the baby pot or the regular one), sleep in one place, and table top activities in one place.

We do realize that there are many homes in which a place has many uses. If there is an area that is used for more than one purpose, use some kind of visual cue… A specific object, picture or word can be used to let the child know what is to happen or what is expected of him. For example, at mealtime, one could place a tablecloth over the table or use a place mat for him. At work time, place a pencil box on the table, indicating the start of work and so on. Of course, it is very important that the objects are used only for one specific activity. Otherwise there may be confusion.

Since children with autism very often are not able to occupy themselves in a conventionally appropriate manner, they find things to do that we might not find appropriate. As mentioned earlier, one important reason for structuring is to teach them to work independently… something that does not come easily to the child with autism unless they are doing an activity that is of their interest. We need to teach them ways to occupy themselves appropriately.

Structuring Time
Structuring time refers to organizing the hours in the day for the child so that he is occupied in a constructive, appropriate manner. Schedule the child's activities so that they cover a large part of the day. Create a routine for him. Plan.

To make it easier, break up your child's day into four to five slots.
For example:

I. Waking up - going to school
II. Reaching home - lunch time
III. Lunch time - dinner time
IV. Dinner - sleep at night

Then go through each slot, breaking it down into specific steps. The first two are done here as an example
I.
a) wake up at 7o'clock e) mother gives him a bath
b) brushes his teeth and washes face f) mother dresses him for school
c) has milk at the table g) eats breakfast
d) is made to sit on the toilet h) is dropped to school

II.
a) is picked up from school/bus stop e) eats lunch
b) keeps bag in designated place f) free time
c) changes clothes
d) puts away school clothes, shoes, etc.

We now make the steps as short and simple as possible, so that they can be clear and precise for the child. If the child's morning schedule is such, the child's instructions will be:

a) BRUSH TEETH
b) MILK
c) TOILET
d) BATH
e) DRESS
f) EAT
g) SCHOOL

But how do we give the child these instructions? It can be done through:
1. object cues
2. object and picture cues
3. picture cues
4. word cues

An object cue means using an object that is clearly connected to the specific activity, in combination with the verbal instruction so that eventually the object itself becomes the instruction. In the example given before, when we tell the child to brush his teeth, we will give the child the toothbrush and then say "let's go brush teeth". Give the child the specific glass and then say, "drink milk" and pour it in the glass for him. Then after he has finished, hand him a small mug and tell him, "toilet time". After he has washed hands, give him the cover of the soap you usually use, to indicate bath-time…underwear to indicate dressing, a plate for eating, his bag for school and so on, reinforcing the connection between the object and the activity.

The objects mentioned above are just examples. You want to use things that are specific to your home and habits/or whatever is available. An empty bottle of shampoo, a small towel, a body scrubber etc could also be used instead of the soap cover.

Initially this will need to be done everyday until the child makes a clear connection between the object and what he is expected to do. Slowly reduce the verbal instructions and allow your child to move towards doing the activity unprompted. Give him the object and pause. Always give the child some time to process the information coming to him. If there is no response, give him the verbal instruction and praise for complying. If he does it without the verbal prompt, remember to praise big!

An important thing to keep in mind here is that we want to use a kind of schedule that is appropriate to the functional level of the child, because our aim is independence. If your child can relate to pictures, then use pictures of the objects mentioned, or if he can read then names of the activities.

As you find him responding to the visual cues (object, picture or word), begin to lay out the cues in a way that he child can use them independently. If the aim is autonomy then we do not want to always be present to hand him the cues because if we are, then he is not really achieving independence.

Teach him to use a SCHEDULE. Schedules can either be for a part of the day, or for a full day. Always start small, ie with short time periods. Teach one step at a time, slowly extending the time.

Setting up the Schedule
If it is possible, you can have a rack on which there are at least 3-4 shelves which can be used for the schedule. When laying out the schedule we follow a top-to-bottom, left-to-right method. This is how most things flow in the everyday world. For example we read left to right in most languages, grocery lists are top to bottom - our eyes move naturally in these directions. So to begin, place only one object on the top shelf of the rack, and then lead the child to the shelf saying, "let's check your schedule" or "let's see what we do next". At the shelf, get the child to pick up the object and then say, "Okay, it's time to brush teeth." Let him go to the bathroom on his own. If you help in brushing then you could be there to help him. Place the next object cue on the top shelf before he finishes. Take the child back to the shelf saying the same thing. Similarly, go through each step guiding him as to what to do.

Slowly fade the prompting and tell him "check schedule" and let him go through the process by himself. Always remember that this is not going to happen overnight. It is going to take time.

Once he is comfortable with this, start keeping two things - one on the first shelf and one on the second. Get him to pick the one from the top shelf first, complete the activity and then go for the second one, after the activity is complete. These objects can be increased to fill in the entire morning schedule of the child (illustration).

When your child has been using a part-day schedule for some time and is able to do so comfortably, and more importantly, independently, slowly increase the time span the schedule covers.

I - Shelf Initially

Brush

II - Shelf after the child is more comfortable.

Brush
Milk

III - Shelf when the child is able to use the schedule on his own

Brush
Milk
Toilet
Bath
Dress
Eat
School

As you are aware people with Autism also have difficulty occupying themselves in a manner that is socially, or age, appropriate. This kind of a schedule can be used to structure leisure time as well.

During your child's leisure time, if you can make yourself free, take out a maximum of three different toys and put them on a shelf or in a corner on the floor of the room. Allow your child to pick out whichever one he wants and play with it. We want to remember that this is his leisure time and not time for us to control the "play". After he has played with the toy (toy 1) for a few minutes, the tendency will be, to go for the next one (toy 2). At this point you want to jump in and say, "Finished! Let's put this away." Get him to pack up the toy (toy 1), into the box or tray, put it back…and THEN go for the next (toy 2). If he shows resistance, to letting the first toy go, then you say, "Not finished. We will take the _(toy 2)_ (name the toy he wanted) when you finish playing with the (toy 1) " (present toy).

It will take some time before the child gets the idea but if this is done consistently and the same pattern followed each time, your child will eventually learn. Once he learns this, you can lay out his leisure activities on a shelf and leave him for short periods to begin with, and slowly extend the period of leisure time.

Structuring the Activity
Again when working with the child, structure the environment to maximize the potential for interaction with the child. Pick a certain area of the house where you will work with him and make sure the area around him is free of distracting pictures, toys, strings and dandling things etc. Sit at a level equal to or lower than the child to encourage eye-contact. Remember to clear the table and make sure that the planned activities are out of reach of the child, in case there is an effort to reach for them before you begin.
To structure the activity, we follow the Top to Bottom or Left to Right (T-B, L-R) pattern of work for two reasons: a) most things in the world move in these directions (as mentioned earlier), and b) if there is a single same method that each person working with the child follows, then there will be greater consistency and less confusion.

Lay the work out in such a way that it flows from the child's left to right or top to bottom. Therefore the activity must be introduced from the child's left. He works on it and then puts it away on the right when finished, into a visually clear "finished area". A tray or basket, different from the ones in which he does his activities can be placed on the right of the work-table to put the finished activity in.
The activity itself, also, needs to be laid out clearly and in a T-B, L-R manner.

This is a simple sorting activity. The area for work is clearly defined by a large tray, plate, sheet of paper etc. The objects to be sorted are in the rectangular container on the left into the circular containers on the right. When all the objects are sorted, the tray goes into the finished basket.
Finally when you have planned the activity, the child should be able to answer the following four just by looking at the activity:

A. What work is there to do?
B. How much?
C. When will it finish?
D. What next?

In the example of the activity laid out T-B, the answers are:
a. What work ….to sort out the cubes, hearts and circles
b. How much…..3 circles, 3 hearts and 2 cubes
c. When will it finish….when the top tray is empty.
d. What next…Put it in the finished basket.

These are a few very basic ideas on how to begin working within a structured setting. We can use structure on an everyday basis so that the children with autism can feel more in-control of their world and in turn be more willing to comply and be cooperative and independent.We want to alwaysremember that every child with autism is different and that the examples given may not necessarily fit your child's level of functioning. Therefore you will need to figure out what step to begin with for your child and take it from there.And finally…Follow through whatever you begin with consistency and persistence for there to be results at the end.

Teaching Numbers
Kumkum Seal and Indu Chaswal

Most children with autism have a good rote memory. We have found autistic children who can count comfortably up to a hundred or even more. But the same child may find it difficult to pick out a particular number of objects on request. For example, if we give this child a box full of marbles and ask him to pick 'three marbles' he may start picking the marbles and may not stop after three. Or if we give the child a plate full of biscuits and ask him to "give two biscuits to Daddy", he may not be to give the exact number. When this happens, we cannot be sure that the child has acquired the concept of numbers. All that he knows are the number names by rote just like he knows his favourite rhymes, TV jingles or songs. Some children can count figures (like circles) drawn clearly in a linear (horizontal or vertical) row arrangement. They start counting from one end by rote and stop after the last figure. If they are given to count figures arranged at random on a card

[picture not available on Internet version]

they are not able to do so. This again happens when a child knows number names by rote and still has to learn the concept of numbers.
What is the most important thing behind learning the concept of numbers for the autistic child? We know our children lack in generalization skills. So the main idea behind teaching them numbers is to make them apply this knowledge in everyday life. A child needs to pick, give, put in and count things in daily situations. For example, in laying the table he learns to count the number of plates and spoons as per the number of people that are going to eat.

So in teaching numbers we can be sure that a child has acquired the concept when he starts giving, picking or taking a particular number of things on request. We start with one number at a time and start with the number '1'. Remember that we do not want to teach the concept of zero now. Zero is a very abstract concept and it comes much later. Also do not use the word 'number' in front of the actual number, such as "number 1". Just say the name of the number alone. "1"

HOW WE TEACH ONE:
Sit with the child in front of you at any place that is (a) comfortable for both of you, (b) free of distractions like sounds or too many other things around. Introduce an object (e.g. a spoon), place it in front of the child and say "one - today we are doing one". Point towards the spoon and say "one", stressing a lot on the number's name. Avoid saying, "one spoon" at this stage. Get the child to pick one spoon and drop it in a jar. As the child does it (you may or may not have to hold the child's hand to give a prompt) say "one". Repeat this activity at least seven or eight times by introducing one spoon at a time. It is very important to use absolutely identical spoons. Repeat a similar activity using different objects (marbles, blocks, beads, and counters). Try not to give objects that the child is obsessed or fascinated with. This will reduce his focus on the actual aim of the activity.

After this we introduce more than one object at a time (say two spoons) and ask the child to "pick one". There could be a possibility of the child picking one even though he may not yet have acquired the concept. This happens because most kids would pick objects one by one or one at a time only. So just wait and see whether the child stops after picking one or does he go to pick another after picking one.
Another way could be tying objects in twos and ones. For example, tie two spoons with a rubber band and take one spoon and put a rubber band around it. The rubber band around the single spoon anticipates the child using the rubber band as a cue. Now show both of these and ask the child to pick one. See whether the child goes for the single spoon or not. When the child picks up 'one' correctly seven out of ten times (over repeated sessions) we can be sure that he knows it. We can reinforce 'one' by asking the child to "put one" (of similar objects) in each of the segments of an egg tray or an ice tray.

At this stage we can introduce the number shape also. Take a card (say 4 inches by 4 inches) and write '1' with a thick black marker. Place it in front of the child, run his finger along the number shape and say "one". As the child puts one object in each segment of the ice tray or the egg tray show the card and keep saying "one", pointing to the number shape.

As the child is learning 'one' make it as functional as possible, which means to use use the maximum opportunities in which the child uses the concept of one. Ask him to bring one plate from the kitchen or serve one biscuit to Daddy. If the child likes books start pointing towards pictures of one thing and say "one tree" or "one car". Slowly the child starts generalizing and making a connection of number one to things in his environment and understands when we say one boy or one ball.
For each activity mentioned in the above we may have to sit over two or more sessions. Once we are sure that our child has mastered one we move on to number two in exactly the same way we did one. That is
(a) introducing two objects and getting the child to pick and then put in 'two' on request
(b) introducing more than two objects and asking the child to pick two. Use objects tied in twos and threes if needed and asking the child to pick two
(c) two-to-one integration (example - putting two beads in each segment of an ice or egg tray and introducing the number shape)
(d) use of pictures or picture cards
(e) reinforcing two in daily situations

All this cannot be done in one day. The length of time it will take depends on many factors, but even more than a week of doing this every day is possible. When the child has mastered two, we do one and two together. A few activities of this nature follow.

1. label two containers with slips of paper having 1 or 2 written on each. Give the child one object or two objects tied together and ask him to match it to the correct container. You may have to do a few turns yourself to enable the child to understand the activity. You can also use picture cards in place of objects.
2. If the child can hold a pen give him a work sheet having one or two pictures drawn in separate rows. In front of each picture write 1 and 2. Get the child to circle the correct number. Eg. (Bindu see the hard copy please)
3. Give the child his favourite activity like beading, clapping, stamping, pasting, putting things in a container, etc. Write the number shape and ask him to clap, stamp, bead, paste, or put in, accordingly.
A child who has a concept of 1 and 2 can move on to numbers up to 9 very comfortably and in the same way. Do activities like sequencing numbers and then move on to higher numbers. If the initial concept of one digit numbers is clear to an autistic child he can acquire concepts of higher numbers very easily. Be very creative and think of activities that will be of interest to the child. And finally, in whatever method we want to use to teach, whether this or some other, have fun and enjoy the process!

Income Tax Relief U/S 80DD for Parents/Guardians of
Persons with Disabilities
Ashwani Chaswal

Till the financial year 1997-98, deduction of Rs. 15,000/- was allowed U/S 80DD and deduction to the extent of Rs. 20,000/- was allowed U/S 80 DDA. Vide Finance Act 1998, section 80DD was substituted for both sections 80DD and 80DDA and deduction was specified up to a 'limit' of Rs. 40,000/-.

However, because of the language of the Act and the word `limit' appearing in it, the various offices were asking for actual vouchers/bills for medical expenses incurred towards the handicapped dependant, for allowing Tax deduction at source to the Parent/Guardians.

Realising the difficulties involved in producing such vouchers/bills, a group of parents met top Govt. officials like Mr. D.K. Manvalan (Secy. Ministry of Welfare), Mr. Ravi Kant (Chairman-Central Board of Direct Taxes) and Mr. G.C. Srivastava (H. Secy. Ministry of Finance) and explained the issue in details.

Thanks to the concerned officials that a prompt action has been taken and the issue has been resolved once & for all. Vide circular no.775 dated 26 March 1999 from Ministry of Finance, it has been clarified that for availing Income Tax deduction U/S 80DD, the employees are required only to furnish a medical certificate from a Government Hospital certifying the disability of the dependent and a self declaration certifying the expenditure incurred on account of medical treatment (including nursing), training and rehabilitation of the handicapped dependant. Actual receipts shall be required only in case the employee seeks deduction on account of deposits made in specified schemes of LIC or UTI.
This shall be applicable for the financial year 1998-99 and onwards.

Of Workshops, Clinics and the Summer Heat
Sarah Thomas and Kumkum Seal

We were looking forward to taking workshops at Bhubaneswar, Calcutta and Siliguri. Delhi was melting hot when we left on the 23 May. A lot about Bhubaneswar's heat and humidity was reported in the press. But when we arrived in Bhubaneswar, it was very different from Delhi. Delhi with its tall buildings like a concrete jungle and its pollution; Bhubaneswar so open and green.

The Open Learning Systems, an organization working with children with disabilities were the organisers of a State Level Workshop on Autism for parents and professionals. The workshop was from the 23 to the 24 of May with Kasturi Mohapatra and Professor Rath of OLS being the force behind the workshop.

Approximately 60 parents and professionals participated. The focus was on empowering with a better understanding on autism and how to learn to deal with it and learn methods of teaching. We interacted with a wonderful bunch of professionals whose enthusiasm was evident in the kind of questions put to us during the sessions as well as in the question hour. We also had the opportunity to meet with parents whom we had earlier corresponded with. Most of the participants were interested in knowing how to teach self-help skills and independent livings skills.

Our next stop was Calcutta and we were charged though a little tired. The first evening we met with Hope for Autism, the local parent support group and an informal question answer session. Invited too were a couple of parents whose children were yet to receive a diagnosis and had been advised to meeet the AFA team. We also discussed ways that AFA could help HFA.

Mithu Bhar of Greenfields Integrated School along with Hope for Autism, and the ever-supportive Indrani Ghosh the wonderful facilitator for the group who prefers to keep a low profile, had organized a five-day workshop at the Calcutta Information Centre. This workshop had the same energy and excitement as the earlier one at Bhubaneswar. Everyone seemed to be so involved and wanted to know how and what they could do to help their child at school or home. The desire of each person was that professionals and parents join hands and work together to help their children. And it also included my (Sarah's), introduction to Bengali cooking and mishti through the exciting lunch boxes that were ordered for all participants!!

On the second last evening of the workshop, the AFA team visited Bodhayan, a creche run by parents where we got to meet with the children - it was so refreshing and such fun! to interact with them. Later on we met with their parents.

The last day of our stay in Calcutta we visited Greenfields Integrated School. Mithu Bhar, the director, is keen to start a more specific section for autistic children. The school already has a few attending. Being a part of the workshop helped her teachers understand, and get a clearer picture on, autism. However they still had a lot of queries on how to structure the school and teaching methods. We were also introduced to some of the children and their families along with a lot of specific queries from the teachers particularly on behaviour management and teaching particular concepts.

We had carried books for HFA to help them to start Resource Centres at two or three different locations in Calcutta to enable parents and professionals to read more on autism.

On to Siliguri. We arrived on a hot muggy day at a beautiful tea garden where we were to stay. The next day, 1 June, we set out for a clinic set up at Prerana a school run by the North Bengal Council for the Disabled (NBCD). News of the clinic had spread far and wide and there were about 25 families from not only Siliguri but also from the neighboring towns and villages including Darjeeling, Mirik and Kalimpong travelling for several hours to have their child assessed and diagnosed. We learnt from Captain and Rita Sengupta of the NBCD who had organised the activities in Siliguri that there were no facilities and very little information on autism in the region. On learning of the visit of the AFA ream, many families with children who had received diagnosis of cerebral palsy and disabilities other than autism also turned up in the hope of receiving some help. We could not of course disappoint these families who had travelled long distances to Prerana with their children. Dr Deb, a psychiatric from Calcutta, who had travelled up with us helped out by setting up a wonderful conselling session with these families, while we dealt with those that clearly were assessed as having autism. One of the children whom the teachers felt had autism, was actually displaying autism-like features without actually being autistic. He was visually impaired and had not received any stimulation for all the years of his life till six months ago when he arrived at the centre where he now was. Though we were fairly certain he did not have autism we suggested another assessment after six months. There was another young lady who we advised similarly. At the end of the day nine of the children clearly appeared to have autism.

The next day NBCD had set up for us to conduct a workshop for teachers, doctors, and parents where a lecture demonstration and video format were used. We also met with doctors and educators on ways thatinteraction with AFA could be carried on.The entire visit was for us very encouraging. We do desire and hope for parents and professionals to work together with respect to help our unique children. We look forward to creating a platform of interaction between the different organizations helping to create and share innovative methods of learning which would spark off new interest and involvement in the field. It was a great experience for all of us on the team to interact with the parents and professionals and we are grateful for the opportunity to help, learn, and share in the short time spent together.

Alternative Treatments:
Rolling With It - The Particulars of Auditory Integration Therapy
Kristi Kemp

Those of us who have an autistic child in our families or have worked closely with an autistic child will have noticed the differences in the thresholds of his or her sensory percepts - oftentimes the hard way. Perhaps the gentle brush of our hand on their skin sends them jumping or withdrawing sharply, or maybe certain light makes them squint in pain or look sideways at the world around them. They may have difficulty maintaining certain postures, eating foods with particular textures, or coping with certain scents in the air. Sounds that we may not even be able to detect in the environment may be the same ones that irritate our kids and even drive a lot of their undesirable behaviours. Things that may seem perfectly innocuous to us may be as abrasive as the scratching of our nails on a concrete surface to the child with autism - noises like the rustling of a paper, the drone of a distant airplane, the click of a lock, or the whistling of a pressure cooker. Sometimes, children are able to show their discomfort and will clap their hands over their ears, cry, or take themselves into a physical space where the sound cannot reach them. Very often, however, a hearing sensitivity manifests itself in ways that are not so transparent - for instance, hearing sensitive people may withdraw markedly into their world in order to cope with background noise.

One method in dealing with hearing sensitive individuals (including autistic people) that has received attention through personal accounts and media exposure is Auditory Integration Therapy (AIT).

AIT is a hearing enhancement training process in which the affected individual listens to music presented through a machine that is able to control the pitch, tone and frequency of sound. Two of the main proponents of AIT have been Dr Alfred Tomatis and Dr Guy Bérard, who subscribe to similar, but not identical methods of retraining the ear, and then the brain, to appropriately process incoming auditory information.

The Tomatis Method Dr. Tomatis, a French physician, psychologist and ear specialist, takes into consideration a person's hearing and all of the historical, psychological and social factors that may contribute to it such as family background, self-image, posture, emotional state). The receptiveness to sound, including language, is what Dr. Tomatis strives to enhance. He feels that it is to ourselves speaking that we listen first - that is, our perception of our own voices is the first sound that we encounter. Therefore the method he uses aims to improve receptive listening by enhancing a person's own voice (i.e., making it sound "normal", or as it would to others without hearing difficulties) through an instrument called the Electronic Ear. A person receiving Tomatis AIT would make a variety of sounds (singing, speaking) into a microphone which are then boosted into a high-frequency range by the Electronic Ear (he believes that higher frequency sounds are more stimulating and enriching) and then fed back to the person through headphones. By exposing the ear to a variety of frequency ranges, the ability to hear oneself, and consequently, one's environment, has the potential to be improved. The Tomatis method requires about 60-100 hours of listening and self-listening exercises, and is monitored closely by listening therapists. More information on the Tomatis method of AIT is available in the book About the Tomatis Method by Gilmor, Madaule & Thompson 1989, published by The Listening Centre Press, Canada.

The Bérard Method. Dr. Bérard, an ear, nose and throat specialist, practices in France and was a past pupil of Dr. Tomatis. His theory on hearing sensitivities acknowledges that difficulties may lie in either the physical reception of sounds or the encoding and transmittal of auditory information in the brain (and perhaps both). A person who goes for Bérard AIT first has a hearing test, and it is assessed which frequencies of sound pose a difficulty to the listener. Many autistic children are not able to give a complete hearing test (called an audiogram) for that very reason - that some of the sounds are very painful for them. However according to AIT practitioners, even without an audiogram, the AIT can be used with a child.

Each round of Auditory Integration Training consists of twenty half-hour sessions; two sessions a day, once in the morning and then again in the afternoon after a break of three or four hours. So the treatment lasts for ten daysDuring the training the audiologist uses compact discs of previously 'scrambled' music using an instrument called an audiokinetron machine, and feeds it into your child's headphones. The music is adjusted over the days so that it exercises and massages the ear and stimulates the brain.

Dr. Bérard's method of AIT is more frequently used of the two methods. Audiologists who wish to provide AIT receive a special training and have to obtain the appropriate equipment. More audiologists have been trained in Bérard-type and thus this AIT is more widely available, largely as a result of Annabel Stehli's book Sound of a Miracle recounting her daughter Georgiana's progress following a Bérard-type AIT that she experienced when she was a child. Subsequently, Ms Stehli started the Georgiana Organisation, through which along with her now-married daughter. Georgiana she promotes the value of AIT and publicises auditory services worldwide. She has authored a second book on the subject, Dancing in the Rain.

In giving a child Auditory Integratin Training parents have to be aware that the child will have to wear headphones - the ones that fit over the ear, rather than those that sit on or in the ear. For a family that wants their child to undergo AIT it is a good idea to begin preparing him far in advance for what will happen. Help your child practice wearing headphones a few times a day, first without music and then, once your child is more comfortable, with music. If you are playing music, choose music your child likes, so that keeping the headphones on is reinforcing. Many parents have found that this 'practice' really pays off during the actual AIT.

During the time when AIT is actually being performed, it is preferable if the children can sit quietly. However, they can basically do whatever they want, as long as they keep their earphones on. Usually, a comfortable area has to be provided, equipped with cushions, blankets and maybe even some toys and books. Many children actually fall asleep during the therapy.

AIT is reported to have a few side effects. Some of the side effects that have been observed are either increased hyperactivity or dormancy (i.e., extended periods of sound sleep). Many times challenging behaviours that have long since disappeared may return. These behaviours are reported to be short-lived: a few weeks to a couple of months. Parents are advised to consider their child's period of challenging behaviour as an adjustment period, and deal with them as always - with gentle and firm behaviour management strategies.

However, it is important to recognize that all the reports and information about AIT are anecdotal. This means that all of the "success" stories are of parents of children for whom it worked, rather than a careful, scientific study. Parents who have not had positive experiences are often disappointed and frustrated, and their stories may not be known. It is not clear for which child AIT will be successful, for which it will have no effect, and for which it will cause a setback. In other words, AIT should be considered a risk. It is one that parents may be willing to take, given that they can afford the charges. Although the effects of AIT are reportedly fairly gradual, there are reports of parents who say they have seen immediate and significant positive changes in their children. For instance, during the AIT treatment period, some children are reported to say words (where before they were limited verbally or perhaps completely non-verbal), reduced some of their self-stimulating behaviours, played appropriately with their toys or siblings, increased their eye contact, or express emotions. However, so far the only case of any dramatic improvement has been that of Geogiana Stehli. Incidentally, contrary to popular belief Georgiana is not 'cured' of autism; she continues to remain an adult with autism who is functionally now very able.

There are certain situations in which AIT should not be administered: AIT should not be given while your child has an ear infection. Fluid or blockage in the ear will make it difficult to obtain an accurate audiogram, and it is considered useless to do therapy on someone whose hearing is not in its normal state. Also, if your child is below the age of four, it is not advisable to do AIT, as his ears are not yet fully mature. Before the child is four or five, some muscles in the inner ear are not fully developed, and there are also some connections in the brain which have not been made. A child who undergoes AIT is advised never to listen to music through earphones ever again in their lives or else any benefits derived from AIT will be lost. Finally, AIT is an extremely expensive therapy given the lack of certainty of benefit to the child in the sense that there is no guarantee that a child will show improvement after AIT. The cost per child for Auditory Integration Training is about $1,000.

The scientific community has been dubious at best and generally, is overwhelmingly and vocally opposed to the efficacy of AIT. To people whose rationale is research results equals reality, the lack of empirical 'proof' for AIT will of course mean to them the lack of validity. Although some research has been performed, the results have been difficult to generalize. However, as always, it is up to the family to decide whether Auditory Integration Therapy is a therapy that they want to explore for their child

The Annual Day
Kristi Kemp

On 15 May 1999, following two months of after-lessons sweaty practice (often with no electricity!) and a heat wave that almost threatened to cancel it, Action for Autism and Open Door Outreach and Intervention Centre presented its second very successful Annual Day.

The event was held at the old school building at 370 A/2 Chiragh Dilli, and the morning show came off beautifully. The excitement and enthusiasm of the teachers, staff, and audience was high even in spite of the relentless heat. Our guests included our always-friend Kirsten Broager of the Royal Danish Embassy and Anand Sharma who has helped AFA to obtain land in New Delhi where eventually we will be building our National Centre. Many parents, family members and other supporters of AFA also joined us.

Our program started off with a bang with a full-cast rendition of the song "Train Me Channa Nanna", which showcased the children dressed in the various colourful costumes of some of India's states. The kids wore their dhotis, kurtas, and even little sarees with grace and charmed the audience as they circled the onstage "train" and then smiled at everyone out its windows. Next followed the song, "Sare Jahan Se Achha", which had not only the staff and students singing, but much of the audience as well.

The ensuing portion of the show was dedicated to some of our very talented individual students and their wish to share their musical abilities. These solo acts were kicked off with a rousing performance (including dancing) of "Oh Oh Jaane Jaana" from Sutirtho Chakraborty, followed by "I've Got Peace Like a River in My Heart" by eight year old sweetheart Vrinda Chaswal. The final song was Michael Jackson's "Heal the World", sung a capella in varied tenor voices by senior students Nitin Bhushan, Neeraj Barua, and Vishwa Rana.

The main feature of the program was the stage production of "Sandesh 007", a brand new Indian version of the story "The Little Gingerbread Man" reworked by a few of our creative teachers. Narrated and musically accompanied by our own Sarah Thomas, the play showcased the impressive acting capabilities of the children and their amazing tolerance for artistic costumes and even make-up. The audience was very responsive, and there was a wonderful charge of energy flowing from the kids to the rapt congregation.

Our grand finale was the song "No Matter What" by the popular group "Boyzone". Along with the catchy tune, this song was chosen for its lyrics, which we at AFA felt were appropriate to our children's lives. The refrain "no matter what" really struck us when we heard the song, because it accorded with our philosophy of unconditional love and acceptance of children with autism. As we all sang the song, the children came up, one by one, to a large frame that was being held up by the teachers, and their names ran along the bottom of it as they waved out to the audience. Some of these children may not be able to write their name, make eye contact easily, or even speak, but no matter what, they are unique and wonderful and certainly deserving of our love. I think our audience agreed, if one can assume by the lack of dry eyes.

And it was a marvellous high to have parents share with us at the end of the morning, "I cannot belief how well Aakash performed!" "Sutirtho did so much better this year; he really acted!" And as Kirsten commented, "It is good to see how all the children performed so much better this year.!"

The success of our production, not to mention the overall success of AFA's work with autism, is not just as a result of experience or practice. It is our sincere belief that autistic children each have the ability to do marvelous things, and only with tolerance, commitment, persistence, and most importantly, love, can we be equipped to deal with autism. Come to think of it, none of these qualities would harm us in a life untouched by autism, either.

As our centre grows, we look forward to improving and expanding our Annual Day program. Our performances with audiences not only give the children a sense of pride, but its preparation brings together our staff (through the countless discussions, heated debates, and marathon prop-creating-and-painting sessions) in a special way that other activities do not. Also, the positive impact that such public performances have on parents, family members and other observers is enduring - what better way to showcase the remarkableness of our children than through the universal language of music and theatre?

For those who were in the audience on 15 May, we thank you for your support. See you again next year!

Helpline

Q. Please give me guidelines in improving P's socialisation and communication.

A. The details of your son have helped us to understand him a little better and so here are some suggestions that you could try at home to help you deal with P in a more effective manner.

SOCIALIZATION: It is great that your child is very fond of you all and likes to interact. An important note - people with autism do interact, though often not in a manner that is appropriate, or rather appropriate to their age. They seem to interact mostly when they choose and not when others do. What we want is to teach him to interact in a manner similar to that of other children his own age or simply in a manner that will be socially acceptable… and to enjoy the interaction.

Make times of interaction fun and exciting so that he continues to want it. Use every opportunity to initiate contact. Continue to include him in as many family activities as possible and get him to help around the house…taking in clothes when they are dry, clearing the table after a meal, putting by newspapers neatly. This will help him to feel a useful part of the family as well as teach him the joy of doing things together with someone.

Many children with Autism find it hard to wait. Along with being a social concept waiting also has to do with time which is an abstract concept and so autistic children find it difficult to understand the purpose of waiting. But since this is a very important learning for them, we need to teach it early. To begin with specify the waiting period by marking it with a clear end. The cue to mark the end should be concrete and preferably visually clear. For example, you are talking to a visitor and your son wants your attention. You could tell him, " I will speak to you when I finish drinking my tea", or "…when I finish talking to Uncle". Keep the waiting period very short at first and gradually extend it. A half minute to a minute to two minutes to three and so on. The important thing is to make sure you keep your word. If you have told him you will get up in two minutes then you have to regardless of who you are with or what you are doing. (So keep your waiting period realistic. Do not promise to get up after the tea is finished if you cannot).
Play a lot of turn-taking games with him. They can but need not be the conventional games that we find. Turn-taking can be incorporated into any activity…like peeling peas, picking up toys, fitting blocks, shaking sound producing toys, throwing a ball (or crumpled pieces of paper) into a basket, sorting onions and potatoes etc. The idea is for him to do his bit and then wait until the other person has finished before starting again.

In connection with both communication and socialization, provide him with the appropriate word to use in that context each time he makes an attempt to initiate an interaction by saying one word or pointing. For eg. If he is asking for a toy by pointing to it, you can say "Give car" and then give it to him.

COMMUNICATION: You have mentioned that he communicates his need by pointing or using single words. Keeping in mind his autism where communicative skills are impaired, and his age, he does communicate a fair bit. This is something that you definitely want to encourage. Praise and encourage him whenever he communicates spontaneously.

Equip him with language - Since he already uses single words, build on his language by introducing two word phrases where he uses single words. For example, "give water", "eat banana" etc.and continue to provide him with the appropriate words to use when he does not know what to say. Even if he does not repeat the words immediately, it is necessary to provide the words. Avoid saying " Say Hello " or "Say Give biscuits" because there is the chance that he will learn to say "Say Give biscuits" instead of "Give biscuits."

Just one question about his pointing. Does he point with a single finger or does he point generally in a particular direction. If he points specifically then that is great. If not, then you could get him to do so by moulding his hand in a pointing manner and then help him to point to the item he desires.

Follow through you instructions - Because of the communication impairment in Autism, very often the person with autism does not understand either the purpose or the meaning of words used. They do not understand that when something is said, something happens. So to help them understand both these, it is very very important to always follow through an instruction. If you tell you son to pick up a toy, make sure that he eventually does it. There will of course be days when he does it immediately and other days when he won't. Tell him once. And wait. Tell him again and wait. If he is still unable to comply then you physically prompt him to respond. If he still does not do it, physically walk him through he activity and then praise him as if he has done it himself. This again needs to be done with a lot of comfort.Aside from teaching him the purpose of language it will also teach him that when you say something you mean it. Not carrying through instruction teaches him that you will try a couple of times and eventually do it yourself so why should he bother at all.

Acknowledge - Always acknowledge any attempt to communicate especially when it is spontaneous. Sometime it may not be possible to speak to the child if you are busy or talking to someone else. What you can do is just stop for a second and tell you son, " I'll speak to you in just a minute", finish what you are doing and then respond to him. You could also tell him, "Papa is busy, go tell mama", thereby acknowledging his attempt to communicate but doing what you have to do as well.

Talk to him - As often as possible talk to him. Use very simple language and tell him things that are happening in his surrounding, tell him details about what he is dong what you are doing, things that you see while travelling by bus or car, that you watch on TV. The important thing here is that you talk about things only while he can see them or while he is doing them, like talking about eating during meals. "Rayan is having lunch"… "eating rice and dal with a spoon"… "sitting with papa and eating"… "papa eating bhindi with rice" and so on. Keep it very concrete and factual and specific to the situation, the reason being that it is sometimes difficult for autistic people to make connections between words spoken and objects or situations so as to use them appropriately in the future. Talking about a situation while in it helps them to make these connections

About himself - Teach him to learn basic things about himself like his name, the names of his family members, parts of his body, names of objects in everyday use by frequently repeating the information to him. You could also ask him simple questions like "What is your name?" and then take his finger and point to himself and say "P". This will give him both the correct words to use as well as teach him how to respond to such questions.

Create opportunities for him to communicate - Most often when we have children with communicative difficulties we feel like we need to figure out what the child wants every time he comes near. We anticipate their needs even before they have thought about it. But if we anticipate each need the child has, we really never give the child the opportunity to communicate. The child learns that if he waits long enough someone or the other will eventually give him what he wants and he learns not to make an effort. So do not anticipate needs. Leave the situation open for him to communicate to you in any way that he can find and then respond to him. Of course do not forget to provide him the appropriate words to use in that situation before you respond. As an example, when he comes into the kitchen looking for biscuits instead of just giving it to him, stop and ask him, "What do you want?" Then say "Biscuits" and give him some.

Q. My four-year-old S had learnt basic number concepts at school. He can "give one biscuit," "take two spoons," and so on correctly. I have recently started taking him to a speech therapist. The speech therapist says it is too early for S to be doing numbers. He wants to teach him to recognise his mother and father and other family members. He does not want any focus to be given to teaching numbers or other such skills at this stage.

A. How do we decide what a child can now learn. Taking into account his age, his ability, and his potential. S's school had made an assessment and considered him able to start on various cognitive skills. It woud appear they are on track since S has been able to learn number concepts and not merely numbers by rote. Why would you want to stop this process? According to S's assessment as well as going by your understanding, your son recognises all family members without any difficulty: so why does this skill have to be taught now.

Two things we want to keep in mind: One is that in teaching our children we want to help stretch their minds, not 'teach' things that are below their ability level or which they already know. Second is that we always want to query what is being taught: just because someone says, "Do this" we dont not want to blindly comply. So maybe you want to ask S's speech therapist "Why?" I am sure a discussion will help clarify goals for both the speech therapist and you, S's parents.

Letters to the Editor

Your magazine gives so many touching stories. I am a father of an autistic child and was always blaming America for my son's autism . I was under the impression that since our children in America watch so much television and do not interact with kids and elders they are delayed but it is Almighty who has to run the world and I had to change my impression that autism just occurs in America but as a matter of fact it is all over. My heart goes out to all autistic children and especially their parents because I know what we had to go through. Keep up the good work.

Ali Yar Khan
New York

Very impressive and interesting information. One can see that you feel from the heart, are inspired from the soul and are working with your heads (and muscle power!) for autism. Wish you all the best,

Dr. Nandita de Souza
Sangath Centre for Child Development & Family Guidance
Goa

Greetings from Venezuela.
It's wonderfull what are you doing. The difficulty that we have in our country is the deficiencies of the teachers and physicians, because they don't know too much about autism. We train our team, but then they went to work in private practice.

Lilia Negrón
Sociedad Venezolana para Niños y Adultos Autistas
Venezuela

I am an American who was born in New Dehli. My four year old son has autism. I was intrigued to read about your Open Door school because it seems like such a perfect place for children with autism! I don't know of any programs like it in the U.S.

Kitty Phillips
U.S.A.

Your workshop on autism and allied matters, helpd recently in Calcutta, was tryly an all encompassing learning experience for me and many other parents of autistic children and professionals in and around the city.

Your lucid way of teaching by citing examples from real life situations were all the more helpful in getting across the essential points and also in removing the misconceptions and doubts from the minds of parents and professionals. I wish these kinds of events took place more often in this part of the country, where more people of the city and also from the rural areas could take part and benefit.

I sincerely thank you for all your motivation and dedication for the cause of autistic people and rubbing off some of your enthusiasm and positive thinking on the parents concerned. Also, it was great meeting Neeraj! Wishing you all the best in your endeavor,

Sharmila Banerji
Calcutta

Personal thanks to AFA

Since the last two and a half years I have been following Action For Autism through Meetings, Discussions, Workshops. The Association is doing a tremendously good professional work, fighting with all sorts of problems in this complex country India. I have indeed met many people during my stay in India, but I never found in other places that true enthusiasm, joy, and respect for human beings that AFA and first of all Merry Barua is standing for. I congratulate you (and wish you the best in getting) your piece of land in Delhi, so that you in a few years will have much better conditions than today. I thank you all for being a part of your important work and for giving me knowledge about Autism that I did not have before.

I wish AFA all the best and good luck in the future.

KIRSTEN BROAGER
Responsible for "Visualizing Action For Autism"
(A Mini-Project from Royal Danish Embassy going on from 1997-1998)
15 May 1999