N E T W O R K

December 2000 Vol. VII, No. 3

Page One

In our series on alternative and adjunct therapies this time we cover special diets, specifically diets excluding gluten and casein. The Autism Research International has for a decade carried reports from parents who have seen their children take a leap in their development after being put on the diet. Popularly known as GFCF - Gluten Free Casein Free - diets, they require no special expertise to implement. However they do require a great deal of ingenuity and persistence to implement, since removing both wheat and dairy seems almost like removing the basis of most diets. Many parents give up in the face of initial resistance from their child. Those who see quicker results feel motivated to continue, and we carry reports of two such families.

Bente Johansen studied Autism in England, Austria and Sweden, from 1952 to 1958. Since then she has worked in various areas of caregiving and management both at residential services as well as in day schools and nursery schools. Currently she is a Supervisor monitoring autism services and giving lectures on the subject. Bente has also authored two books on autism in Danish. She has helped set up an autism-project in the Czech Republic and was in Ghana researching the possibility of launching an autism project. We had the great privilege of having her visit at AFA, study its working and the services it provides, observe the methods of teaching, and give us valuable feedback that made us think and introspect on our methods. At 70 plus Bente is full of energy and love for her work. A nasty fall the day after her arrival in Delhi did not deter her from climbing up and down the stairs several times during every visit to the Centre while she observed the day-school and other intervention programmes. We learnt a great deal from her visit, and look forward to a repeat.

Disability Activists have once again shown that persistence leads to results. Through timely action and dogged persistence they have ensured that the Census 2001, to be conducted by the Census Commission from 9 to 28 February 2001 will include questions on disability. This landmark decision will ensure that when policy measures that will impact on the disabled are planned, correct numbers will be taken into account. This will lead to a more realistic allocation of resources. If we want to create a society of equal rights for all, each of us has to ensure that members of our families, or we, who have a disability are not left out of the census due to our negligence or otherwise such as social pressures and embarrassment.

On the road to reaching our goal of being able to train more professionals and reach out to more families, we have encountered yet another hurdle. In its current rented premises AFA is barely able to handle the huge numbers of parents and professionals that approach it for help daily. There is an urgent need to move into our own purpose built National Centre, so that we are able to train more professionals, reach out to more families, and help parent groups to start elsewhere in the country. With this aim an application was made to the Delhi Development Authority (DDA) to allot land to AFA on concessional rates, under category B-V, as recommended by the Department of Social Welfare, Government of NCT Delhi. We now learn that the authorities are not inclined to give land to AFA at B-V concessional rate, though in principle they are agreed on the need for services for those affected.

AFA is an organisation that has a track record that India can be proud of. In barely ten years, with no government funding, it has had a major impact on the face of autism awareness in the Indian Subcontinent. It is the Center of choice for referrals by the leading medical institutions in the country.

India has the dubious distinction of being one of the few countries that is yet to start the process of setting up basic services for those affected by autism, despite the large numbers affected, the severity of the disability, and the dramatic difference that timely and focussed intervention can make in the lives of those affected. In this bleak scenario, AFA has stretched every donated Rupee to provide quality services to those approaching it for help. It will be a great pity if inspite of the doughty efforts of beleaguered parents to help not only their own children but all those effected, AFA has to curtail its work because of a lack of suitable premises.

We earnestly appeal to the Finance Committee of the DDA and the Honourable Lieutenant Governor to allot land to us at concessional rates under category B-V for the setting up of the National Center for Autism and make a pivotal difference in the lives of those touched by Autism.

We wish all our readers a joyous Christmas and a splendid New Year! And a magnificent Millenium that sees the fulfillment of all our dreams and aspirations!!!

 

Alternative Therapies - VI
Gluten, Casein and the Child with Autism
Mia Nilsson

What we are is often determined by what we eat. In the complex world of autism, researchers strive to determine the various factors that perhaps contribute to the unusual behaviours that mark the disorder. For decades now parents have been reporting a connection between autism and diet. Now current research shows that many cases of autism result from an immune-system dysfunction that affects the body's ability to break down certain proteins which in turn affects the developing brains of some children causing autistic behaviors. The key of course is to uncover the
foods that may be causing this intolerance or sensitivity.

According to Paul Shattock and Dawn Savery
(Autism as a Metabolic Disorder, 1997):

"...autism could be the consequence of the action of peptides of exogenous origin effecting neurotransmission within the Central Nervous System (CNS). We believe that these peptides result in effects which are basically opioid in nature....the CNS neuroregulatory role which
is normally performed by the natural opioid peptides... would be intensified to such an extent that normal processes within the CNS would be severely disrupted.

The presence of this intense opioid activity would result in a large number of the systems of the CNS being disrupted....Perception; cognition; emotions; mood and behaviour would all be affected...Many and diverse symptoms by which autism is...defined would result. We believe that these peptides are derived from an incomplete breakdown of certain foods, and in particular, gluten...and from casein."

Proteins are normally broken down and digested by the enzymes in the intestines. However, sometimes this breakdown is incomplete and they remain as short chains of amino acids, known as peptides. These peptides have been found in the urine of a large number of children with autism by researchers. The effect of the incomplete breakdown of these foods is seen as leading to a manifestation of 'autistic behaviour.'

The two significant food groups in this respect appear to be Gluten and Casein. Gluten is a protein fraction found most commonly in wheat, and other grains, most notably oats, barley, rye, and their derivatives. "Derivatives include malt, grain starches, hydrolyzed vegetable (plant) proteins, textured vegetable proteins, grain vinegars, soy sauce, grain alcohol, flavorings and the binders and fillers found in vitamins and medications." Casein, a protein fraction found in milk and all dairy products, has a molecular structure that is extremely similar to that of gluten. This suggests that, breads, rotis, kulchas, pizzas, hamburgers, many popular brands of noodles, biscuits and cookies, paneer, cheese, butter, dahi, chocolates, and other everyday foods could possibly be leading to much of the behaviours in our children.

Curiously, many children with autism appear to prefer a diet that is almost exclusively restricted to wheat and dairy! In the hundreds of children that visit the AFA centre a surprising number seem to subsist on a diet of breads and rotis. Some appear to survive on a diet of just biscuits. Or roti and dahi. If their systems are unable to break down the proteins in these foods appropriately why then do these children appear to crave these very foods. The explanation could very well lie in the fact that these peptides are believed to have an opioid activity on the brain. We know that opiates are highly addictive. If the effect these foods have is similar to an opiate, is it possible that this is the reason that the children appear to be addicted to these particular foods? That they 'self-limit' to the near exclusion of other foods?

The solution would appear to lie in eliminating gluten and casein from their diets. Reports from parents published in the Autism Research International for many years would indicate that gluten and casein free diets do indeed appear to help some individuals with autism. Not all show dramatic results, many may just show positive changes in one or two areas, but most children on a gluten free casein free (GFCF) diet show some small improvements. In addition, smaller children show greater improvements than fully gown individuals.

However, though many parents are convinced of the validity of dietary intervention for autistic individuals, most find the implementation a daunting prospect. When the child eats only foods that contain gluten, for instance, parents worry that the child will starve if a gluten-free diet is implemented. But experience shows that initially the child will not want to eat other foods and crave foods with gluten. Many also go through a phase of irritability, anxiety and upset stomach. But most eventually surprise their parents by broadening their diets and eating foods never eaten before!

How does one implement a GFCF diet? Since it is difficult for many parents to remove both gluten and casein from the diet at the same time they could start by just removing one - whichever is easier given the family's lifestyle. Changes in the child's behaviour and learning will be motivating for the parents and make it easier to remove the other as well. We will not here discuss what that diet will be as it is adequately covered in parental accounts that follow. Suffice to keep in mind that the diet is all or nothing. Research seems to indicate that even small amounts of gluten in the diet can set the results back. Remember to read the labels on foods in stores to check ingredients. In order to determine whether the diet helps your child, a few things need to be kept in mind. Firstly, the child should be put on the diet when no other treatment is being started. Otherwise it becomes difficult for the parent to determine whether the benefits are due to the diet or the other treatments that have just been put into place. Next, it helps to keep a daily record of the child's behaviour to be able to judge changes objectively. Finally, stick to the diet for at least a month. Ideally three months are recommended for results though some researchers suggest upto a year.

While on the subject of diets it is worth noting some other foods that are best avoided. Sugar (sweets) creates more activity and should be avoided. Processed foods contain preservatives and colourings - chemicals - that could lead to more hyperactivity and less focus. Try removing products like tinned foods, colas - Pepsi, Coke. Soft drinks often contain caffeine that tend to worsen irritability and restlessness.

Finally, it is important to acknowledge here that implementing a GFCF diet is a lot of work. Particularly for already overworked mothers. The fact is that in most families it is the mothers who are the prime if not the only carers. In addition to all the housework and perhaps careers outside the home. Implementing the diet is often a challenge. There is also the difficulty with typically developing children in the house who might be eating foods with gluten and casein. All the hide-and -seek in front of the child with autism is not at all helpful. Some parents have found it useful to turn the entire household into a GFCF household. For many it has almost been a lifestyle change particularly when their diets have previously been bread, pasta, and dairy based. Not all can do this. Besides not all families have the same resources. What is important to remember is that every family has its limitations. If I can give my child a GFCF diet that's great. But if I cannot, that's okay too. That does not make me a less caring or bad parent.

The following article is reprinted with permission of the Autism Research Unit of the University of Sunderland. These notes should be taken as observations. They do not constitute a recommendation or endorsement of a dietary method to alleviate the symptoms of autism. Any decision to undertake such a method must lie solely with the person with autism or with those having responsibility for their care.

Background:
In the early 1980's a number of researchers, including Herman and Panksepp, noted the similarities between the behavioural effects of animals on opioids, such as morphine, and the symptoms of autism. In a very speculative paper, Panksepp proposed a mechanism whereby people with autism may have elevated levels of opioids which occur naturally in the CNS (Central Nervous System) of humans. The best known of these naturally occurring opioid compounds is beta-endorphin and certainly there is a degree of correlation between the known effects of this compound and the symptoms of autism.

Just after this, Gillberg produced evidence of elevated levels of "endorphin like substances" in the cerebro-spinal fluid of some people with autism. In particular, elevated levels appeared in those children who appeared to feel pain less than the normal population and who exhibited self-injurious behavior. At about the same time, Reichelt produced evidence of abnormal peptides in the urine of people with autism. We ourselves, like a number of other groups, attempted to replicate his findings. Although his technique was comparatively simple there were technical difficulties and these attempts were, initially unsuccessful. Later on we switched to a more sophisticated technique and have been able to confirm Reichelt's findings. In the urine of about 50% of people with autism there appear to be elevated levels of substances with properties similar to those expected from opioid peptides. The quantities of these compounds, as found in the urine, are much too large to be of CNS origin. The quantities are such that they can only have been derived from the incomplete breakdown of certain foods. Proteins consist of long chains of units known as amino acids. Normal proteins are digested by enzymes in the intestines and are broken down into these units. However, if for some reason, this digestion is incomplete, short chains of these amino acids (known as peptides) will result. It is proposed that these peptides may be biologically active and could result in the symptoms which we see in autism. The majority of these peptides will be dumped in the urine, which is where Reichelt and we are finding them. A small proportion will cross into the brain and interfere with transmission in such a way that normal activity is altered or disrupted. It may be that these compounds, themselves, have a direct effect upon transmission or that they will attach themselves to the enzymes which would break down our own naturally occurring enzymes. The consequences would be the same in either case.

It is well known that casein will break down in the stomach to produce a peptide known as casomorphine, which, as the name implies, will have opioid activities. Similar effects are noted with gluten from wheat and some other cereals in which the compounds formed are gluteomorphins. If this opioid excess hypothesis is correct, there are a number of strategies which can be adopted. Firstly the anti-opioid drug "naltrexone" could be considered and promising results have been reported. [Note: a recent study of 41 children conducted by Magda Campbell, did not produce positive results with low doses of naltrexone. It is possible that doses were too low, but for now effectiveness of this medical intervention must be questioned.]

Alternatively, a diet which excludes casein or gluten could be considered. It may be possible to determine, from the pattern of the urinary peptides, whether casein or wheat or both should be avoided, but such conclusions may be premature at this stage. It has been observed that those children whose autism appears at or around the time of birth may have a problem with casein whereas those whose autism becomes apparent at about two years of age, when a wheat based diet is more likely to be adopted, have particular difficulties with gluten. Some children may have difficulty with both.

Norwegian colleagues of Reichelt have published data which support the effectiveness of such dietary programmes but these studies cannot be considered as conclusive. There have been no other real attempts to demonstrate the effectiveness of such diets on a scientific basis. Numerous people have experimented on an individual basis and have reported successful responses but such evidence cannot be considered as, in any way conclusive. In Rimland's studies of parental reports, however, the results appear to be very much superior to those obtained with any drug based theory.

Practical Aspects:
The theoretical processes described here are toxicological in nature rather than allergic. The results are akin to poisoning rather than an extreme sensitivity such as occurs in celiac disease or sensitivity to certain food colourings. Removal of gluten and/ or casein containing products requires the active participation of all those concerned with the child's well-being. Tests have often been ruined by a well meaning relative who ignores parental instruction, or by schools or therapists who feel that the proposals are rubbish. Carers must satisfy themselves that the diet is being adhered to before any evaluation is possible.

Gluten and casein free products, together with advice on their use, are available from Pharmacies. Nutritionists and dietitians would also be able to advise. Initially the reported effects may be negative, upset stomach, anxiety, clinginess and slight ill-temper. Experience would suggest that these are good signs and precursors of a positive response. Reichelt recommends a trial period of three months. If it has not worked within that time it is unlikely to do so. Experience also suggests that the results are more easily demonstrated in younger children. The effects in fully grown individuals appears less impressive. Given that there appear to be a number of possible causes of autism it is not unexpected that no unitary solution will be found for all cases.

Conclusions:
Although the hypotheses may appear "off the wall" in many respects, there are a number of pieces of evidence which support them. The ideas are compatible with virtually all the accepted biological data on autism and are worthy of consideration.

The dietary method must still be considered as experimental and no positive results can be promised or are claimed. The use of diet may well be far less harmful than other medical interventions or therapeutic regimes. We would be pleased to receive any feedback of a
positive or negative nature from anyone utilising such dietary modification in the amelioration of autism.

Contact:
Autism Research Unit, School of Health Sciences
University of Sunderland,
Sunderland, Great Britain SR2 7EE
TEL: 091 510 8922 FAX: 091 567 0420

Remember that not getting what you want is sometimes a great stroke of luck. If it's right you keep at it.

How to Implement a Gluten Free Casein Free Diet at Home:
A Mother's Experience

Some of the recent studies made on autistic children suggest the autistic kids do not have the proper enzymes to digest gluten (a protein found in wheat, rye, barley and oats) and casein (a protein found in milk). The brain perceives the gluten and casein that are not digested properly as a substance that has a drugged effect on the brain. If these substances were removed from the diet, slowly the effect of casein and gluten would go and the child would awaken to its environment, responding to activities around him or her. I had read some of the success stories. I thought about it for quite some time and as the argument sounded quite convincing I decided to put my four-year-old son on a Gluten-free Casein-free (GFCF) diet this July.

Planning the diet was a big challenge, I had been loading him with gluten and casein from morning to night- milk, bread, chapati, cheese, curd, biscuit, ice-cream, etc all this time. Stopping all this basic food sounded like a big challenge. In the first week, it seemed like a very tough decision as a lot of my time was taken in locating and perfecting recipes to my son's taste.

Initially the reported effects may be negative. As soon as we stopped gluten and casein in our son's diet he became quite dull and craved for those foods. Experience would suggest that these are good signs and precursors of a positive response. These symptoms indicate that the child was addicted to those substances and now shows withdrawal symptoms.

My son has been going to a play school for one year but did not sit in class and did not learn anything much there. I used to teach him at home one to one. But after about a week on GFCF diet he became very active and his speech became louder and clearer. His eye contact improved. The diet helped him to give a better response, as he did not remain lost in his own world. His response to the ABA teaching program improved very much. In school he started sitting in class, responding to the teacher and participated in the class activities. He no longer shunned the company of children and teachers. After about three weeks of the diet his teachers had good things to say about him.

Much of my time goes in planning for his diet. Replacing dairy milk with soymilk was the first diet replacement. We could trace only one company in Delhi making soymilk. However, it was strongly flavoured and contained preservatives so we decided to make our own. With our homemade soymilk we made curd, paneer, custard and also ice cream. At first one may not like the taste of soymilk, but young children soon develop the taste for it.

I have thought of replacements for most of the things our son misses. I use flours other than wheat to prepare chapati. Planning beforehand helps because kids remain hungry all the time and give no time to prepare. As kids remain hungry they are willing to try new things which they earlier would refuse. I keep a batter of dosa ready and bake a GFCF cake every week. Fruits and salads are also handy. Actually if you see this as a more healthy diet, we can all of us switch to it, particularly the elders in the family.

The problem of eating out with our son, once he started on the GFCF diet got resolved easily once we realized that almost all south Indian foods are GFCF as they are based on rice and dals. In a north Indian restaurant he could have rice, vegetables and pulses. All can enjoy having orange bar with him after dinner. If we go for parties we try giving him rice, dals and vegetables and if he insists on chapati we carry some GFCF chapatis with us. Carry fruits on outings. At a fast food joint the choice may be limited to just fries and soft drink for the kid. Many parents say that their kids dig into other children's tiffins at school. While they try and find ways to control this they can continue their diet therapy at home. For an older child the diet could be explained to him.

The diet should be tried for at least three months for some visible change. The results of the undigested casein and gluten take about eight months to be flushed out of the system. When the child is ill and at other times too parents tend to get disheartened and may want to discontinue the GFC diet. But if they can stick to it they would soon realise that the children do better with it.

If you want to start your child on a GFCF diet then do not give any dairy products such as milk, butter, cheese, paneer, curd, ice cream, chocolate or any food items that contain these.

Do not give biscuits, bread, cakes, atta, maida, suji, dalia and any food items that contain these.

You would be surprised to know that much of our Indian foods are GFCF. Our namkeens are all besan based with chirwa, peanuts, chana etc. These can replace the biscuits our children snack on.

As already mentioned, soybean can be used to make a nutritious milk that is quite close to dairy milk. Curd, paneer, custard etc can be made from it.

Wheat flour also has to be replaced by other flours like soyabean, chana, makka, jwar, bajra, kutu, singara, etc. You could also try to make a combination of them. Cakes can be baked using a mixture of rice flour, soybean, chana and corn flour.

While removing dairy products from the diet we must make sure the child gets sufficient calcium from other sources. Rich sources of calcium are ragi, chana, rajma, moth, lotus stem, almonds, gur, figs, cherries, currants, dates, watermelon seeds, cumin seeds. Multivitamins and Calcium supplements could also be given if the doctor advises.

Foods you can give include all fruits, all vegetables, all dals and pulses, all nuts, ghee and all oils (ghee has only fat the casein of milk has been removed so it is safe), egg and fish and meats, rice and most cereals (excluding wheat, oats, rye, barley).

Some suggestions for a GFCF diet for mealtimes are:

--For breakfast: Soya milk, Juice, Chirwa, Potato fries, Saboodana, Dosa, Idli, Cheela ,Fruitso For lunch/ dinner: Soups without milk, Chapati made from GFCF flour, dal, whole pulses, vegetable, curd from soya milk, rice, khichri, fried rice with vegetables
--For snacks: potato chips, banana chips, popcorn, cake and biscuits made from non-wheat flours (cocoa can be used in cake and biscuit recipes), fruits, vegetable cutlets, vada, pakori, murmura, rice noodles.
--For sweets: besan ladoo, boondi ladoo, petha, coconut barfi, other non-wheat and non-milk sweets, ice lollies , jellies, peppermint polo, sweet candies.
--For juices: all juices, cold drinks (watch out for the sugar content in them, as some kids tend to get hyperactive.)

Kelloggs products that do not have wheat can be used. These are fortified with calcium and iron.

GFCF Recipes

Soya milk
Roast Soya bean at 800 C for 20 minutes
Soak them for 8 hours.
Grind into a paste
Add 5 parts water and boil.
Then sieve it through a fine cloth.
Add water to make it of the consistency of milk.
Refrigerate.
Add sugar or any flavoring for taste.

GFCF flour
Suitable for roti or try any other combination
1 parts soya bean
1 parts chana
3 part jwar

Cake
Replace butter with1 part oil and1 part ghee
Replace maida with1 part rice flour, 1 part GFCF flour
1 part corn flour
Replace sugar with Brown sugar or gur (complex sugars are better than simple sugars)
Follow usual cake recipe.

Eggless cake
(Egg can be given in GFCF diet, but if someone is a pure vegetarian or is allergic to egg they can try this)
Replace every 2 eggs with 1 teaspoon baking powder and any liquid such as soya milk, juice or water, to make the right consistency.

Biscuits
Use the cake ingredients and follow any biscuit recipe.

Bread
Bread can be made the same way as the pizza base.Without gluten the bread may not be as soft. We can try using a solution of gondh which is a kind of edible gum available in the market.
Ingredients
2 cups white rice flour
2 cups soya flour / chickpea flour
1/4 cup sugar
4 tsp xanthan gum or gondh
1½ tsp salt
4 tbsp oil
1 cup water
1 tsp cider vinegar
½ cup warm water mixed with 2tsp sugar
4 tsp dried yeast
3 eggs
Method
Combine the first 5 ingredients in a large bowl. Add the yeast to the sugar water and let stand to 'proof' for about 15 mins (or less). Mix oil, vinegar and 1 cup of water, then beat in the eggs. Add the oil mixture and then the yeast mixture to the dry ingredients and beat. If necessary add a little more water. Beat preferably in a heavy-duty mixer; if not beat by hand. The softer the dough the softer the bread! Form the dough into whatever you want (rolls, pizza base or bread). Grease the loaf tin and put the dough into it and keep it in a warm place until risen. Sprinkle with sesame or poppy seeds. Bake until golden brown. In my oven the bread took about 50 mins. You will have to experiment with your own oven.
Makes an excellent Pizza base also.

Pizza
Make the pizza base from the GFCF flour, rice flour and corn flour. Mix yeast with the flour and let the dough rise for 3-4 hours in a warm place. Use paneer made from soya milk instead of cheese.

Chocolate Soynut Cookies
Ingredients
3 cups light brown sugar
2 cups vegetable oil
4 large eggs
4 cups all purpose GFCF flour
1 tsp salt
2 tsp baking soda
2 tbs soymilk
2 tsp vanilla
2 cups roasted soynuts(soaked and then roasted),chopped
2 tbs cocoa powder

Method
Preheat oven to 375o F. Beat oil and sugar in a large bowl. Add eggs one at a time, beating well after each addition. Mix in baking soda, salt, all purpose flour and cocoa gradually along with soymilk and vanilla. Stir in soynuts. Drop by rounded teaspoons onto greased baking sheets. Bake for 8 - 10 minutes or until golden brown. Cool 1 minute and remove to wire rack to cool.

Zubin's Story
Nasreen Mazumdar

A mother shares how a special diet has accelerated her son's progress

I would like to share with the readers the reasons why I believe a special diet is necessary for our children. Many children with autism have trouble digesting certain proteins called glutens (found mostly in wheat, oats, rye and barley) and casein (found in diary products). Gluten and casein contain certain amino acid chains called peptides. The digestive systems of individuals with autism have difficulty in breaking these peptides into simple structures. As a result, these peptides leave the intestine and reach the brain through the blood stream and react at certain sites in the brain. These may then radically affect behaviour, cognitive abilities, emotions, pain thresholds and even sound sensitivity. They also react with areas of the brain which are involved in speech and auditory integration.

I first became aware of these facts when I started my fight with autism, that certain foods can actually be detrimental to our children. Yet, I had not planned to change my son's diet as I was not sure how far it was going to make any difference. Moreover it was difficult to find substitutes for the kinds of common foods to be excluded eg wheat and dairy products. It wasn't until I read a book by Lynn M. Hamilton titled "Facing Autism" that I began to seriously consider the idea. A report published in Autism News also influenced my decision.

Once we were convinced that a Gluten Free Casein Free (GFCF) diet might be worthwhile, we first eliminated all dairy products from his diet. This was followed soon by foods containing gluten. We removed bread, butter, biscuits, cake, pastry, chocolates, ice-cream, cheese, cottage cheese, yogurt and in fact all food stuffs with any suspected gluten or casein ingredient. It is extremely important to adhere to the GFCF diet strictly or the result will be flawed. So, though at first I faced utmost difficulty in choosing the right as well as interesting diet for my son, I was not weakened by his requests for non-GFCF snacks. Gradually he started eating and enjoying fruits, roti made of rice powder, idli, chiwra, murmura etc. I found, to my surprise, he didn't hanker after those foods as much as I had expected and he didn't lose weight. Slowly he started taking new foods, almost all the vegetables, cereals, fruit juices and soups.

When the first positive signs began to show after three weeks of GFCF diet, we were happy but still skeptical about its efficacy. But then as the weeks went by we found consistent improvement in his behaviour and cognitive skills - his tantrums gradually reduced and finally disappeared, his depression spells became smaller; his verbal skills also improved though not substantially. But what surprisingly emerged was a strikingly well-developed inner language! With slight help he can now not only write about events and objects but his feelings as well.

He has now been on the GFCF diet for seven months and on the whole the progress has been good, if not spectacular. From my experience I strongly suggest that all parents of children with autism, try it seriously for at least nine months.

Here are some lines from Zubin's writings. The questions were written down for him. He followed each of the questions and wrote down his answers:

Q. How are you feeling?
A. I am feeling happy because I ate chips
Q. Why are you sad?
A. I am feeling sad because I don't want to study
Q. Why can't you talk?
A. I can't talk because I feel pain in my tongue
Q. What is talk?
A. Talk is yes or no and a way to know many things
Q. Why is talking important?
A. Because it can make others know what I want
Q. What do you want to do as a young man?
A. I will look a young man. I will drive a car. I will go out alone to the market. I will watch TV.

Visit to Action For Autism and Open Door
Bente Gad Johansen

From 12 until 21 of August 2000, I had the very great, interesting and warm experience to visit the Action For Autism centre. The purpose was, together with the parents, director, and staff, to help in the plans for the National Centre that will house the school, the Resourse library, the office and all the other activities of AFA. The reason for that was that the D.S.I. Denmark have supported the work of AFA and would like to continue helping in whatever manner possible, so that it could be a reality for AFA to some day get a much better place, with more space, and designed for their special needs.

Before leaving Denmark I had read about the programmes at Open Door on their website, and
I had heard a lot of positive things about the work being done and their dynamism from some Danish persons who had already visited.

At my very first meeting I saw this dynamism and the energy in action! The next day some mothers, the staff and the director came to where I stayed and we had a brainstorming session. Before the end of the next day our discussions were already written up. Really fine work
and what involvement!

The two days I spent at the centre was so impressive for me. I saw all the classrooms, the different activities in small groups as well as one on one activity. Not only was the atmosphere warm and understanding of the children, there was cooperation and confidence between the persons working there: Whether it was persons who came to be trained, or persons who were the trainers. And though the director was everywhere, doing observations - talking to the different persons, who came, talking in the phone, writing at the computer she took the time to explain and answer my questions! I also spent time observing, and had the opportunity on both days to give my feed back on what I had observed, as well as sharing some of my own work experiences.

Coming from a small, rich country as Denmark, where we have fine nursery schools, schools, residence places for children, youngsters and adults as well as daycare centers and much more, it made a deep impression on me seeing the very fine quality of work being done in this environment! There is a very big difference between us when we compare our buildings, equipment, materials and so on.

But here I saw what it means to have the spirit in spite of the lack of materials and space.

The philosophy of AFA that I encountered is a very fine and a good one. We have to accept the autistic person as a person if we want to help them to a better life. But it is hard work, that demands a lot from us. It demands, that we can give structure as structure is strongly needed for a person with autism. Structure gives confidence, and that gives them the courage to try to go into more activities. We have to try to change things into a better way of understanding, also to understand, that what causes autism is a damage somewhere in the brain, as no one has responsibility for!!

Because of my background and from my over forty years of experience I could at once feel and gauge the excellence of the activities AFA is engaged in, with the parents group, the counselling, workshops, and the other activities at Open Door. I do hope Action For Autism will succeed in raising the money for a National Centre, and I hope to be able some day to return and see the new place!! I wish the children, the parents, and everybody, all the very best in the future.

 

YOU CAN HELP ! Action for Autism needs Sponsors for: o Autism Network in 2001 o Photocopying needs o Teachers for Open Door

 

Disability & Census 2001
Rama Chari
National Centre for Promotion of Employment for Disabled People
Member, Disabled Rights Group (DRG)

India is one of the few countries that conducts Census every ten years. The irony is that despite this we do not have authentic statistics on the population of disabled people in our country. Comparing official figures of the disabled population in various Asian countries: India 1.9% (Source: NSSO Survey 1991) China 5%, Pakistan 4.9%, Philippines 4.4%, Nepal 5.0% - one would imagine that we have eradicated disability completely from the country!

In the Ninth Five-Year Plan (1997 - 2002), the Planning Commission had categorically stated that, "to ensure planning for the welfare and development of the disabled more meaningfully, there is an impending need for the Office of the Registrar General and Census Commissioner, to revive their practice of 1981 Census to collect the data on the size of the population of persons with various types of disabilities and to make it available through the next Population Census of 2001 AD."

The Census allows statistics on persons with disabilities to be analysed by a wide range of variables such as age, marital status, income, labour force status, family status and then compared with the results for the total population. Further, the Census can give estimates for small areas and small populations, which is usually not possible in Sample Surveys because of size limitations. No doubt the Census may have problems with under-estimation of persons with disabilities, particularly with mild disability and children and older persons with disabilities. However, while analyzing the data, this can be taken into account to provide baseline information on frequency and distribution of disability in the population: essential for policy planning and fund allocation. Data obtained in the Census can then be utilized for the development of representative surveys and studies where more detailed information can be collected on persons with disabilities. The data could be used to reduce the disadvantage inherent in the limited sample size of sample surveys. The ideal approach would be to use the Population Census as a screening device and then use it to improve the efficiency of the sample selection in a Sample Survey.

However, our Census Commission was not even considering the inclusion of disability as a category in the Census 2001. Interestingly, the first Indian Census of 1872 included questions not only on the physically disabled but also on the intellectually disabled! The practice was discontinued in 1931. Thereafter only once in 1981, the International Year for Disabled Persons was an attempt was made to collect information on disabled persons under the Census! This practice was once again discontinued in 1991. No one saw fit to question this move. The DRG wrote to the Census Commissioner, as well as to the President, Prime Minister, Leader of the Opposition, Home Minister, among others, explaining the need and importance of the issue. We contacted NGOs, disabled people and politicians, appealing to them to protest strongly against this omission of the Census Commission.

Shri Arun Shourie initiated a meeting on 18 February 2000 with the Census Commissioner to discuss issues related to the inclusion of disability in Census 2001. However the Commisioner asserted that:

1. The Census on disability that was conducted in 1981 did not give a correct estimate of disabled people in our country for which the Census Commission was held responsible, which justified the current stand.

2. The Enumerators find it difficult to elicit information from the respondents regarding the type of disability, etc.

3. People with disabilities and their families will anyway hide their disability because of the social stigma attached.

The very wording of the 1981 Questionnaire is illustrative of its shortcomings, not only listing the 'totally crippled, totally blind, and totally dumb', (indicative of awareness levels at the time) but excluding completely hearing impairment, mental impairment, and partial disablement. Rather than excluding disability from its agenda the Commission should consider removing these shortcomings. As for the difficulty in gathering information, the Ministry of Social Justice and Empowerment had given the assurance that it would take the responsibility of training and sensitising the Enumerators. To address the third argument, there is social stigma attached to caste, religion and even gender, yet questions on these issues are not excluded.

The alternative offered by the Census Commissioner was a Sample Survey! DRG argued that there was simply no justification for an Either/Or approach. Population Census and Sample Surveys are complementary to each other. You first get the raw data with the help of the Census and then refine it with the help of Sample Surveys.

When the Census Commissioner remained unmoved the battle was taken to the media, the Parliament and the public. A Public Rally was organised, followed by a day-long Dharna and a planned Nation-Wide Dharna!

A day before the proposed day-long Dharna, the Home Minister's office called the DRG to a meeting to discuss this issue under the chairpersonship of Shri L.K. Advani himself. The Draft Questionnaire of the upcoming Census, brought along by the Census Commissioner, showed a total of 26 questions. These include items such as whether one is a Vegetarian or not. Non-Vegetarians were further asked whether they ate duck or chicken?!! Shri Shourie, who is also a parent of a disabled person, asked the members present, "Are these questions more important than asking whether my child is disabled or not?" Shri L.K. Advani assured the DRG team that the issue would be resolved. An informal Committee was constituted that met the very next day and drafted its recommendations. The recommendations were then presented to the Home Ministry for its final approval. Finally, on 11 June, the Government made an official announcement that disability has been included in Census 2001.

Statistics emerging from Census 2001 will bear directly on policy planning, resource allocation and the well being of 70 million disabled citizens of our country! If we do not play our role effectively, we will have to wait another ten years for a correct figure regarding the disabled population in our country. We therefore appeal to all well-wishers of the disability sector to take up the challenge and ensure that the message trickles down, so that that the maximum number of disabled people are accounted for when the actual Census takes place all over the country, from 9 to 28 February 2001.

The Action for Autism
Annual Benefit Cum Awareness Concert

VENUE: India Habitat Centre, New Delhi
DATE: 20 January 2001
TIME: 6:30 pm - 9:30 pm

The wonderful Sushmit Bose has kindly consented to perform for us at the IHC Amphitheatre
in the New Year!

We will show a short film on autism. Children with autism will also give performances.
It will, as usual, be a fun event for the entire family. Mark your calendars now!

This is the one event that helps to raise funds for keeping AFA's activities going through the year.

If you want to help with contributions, or by raising advertisements in the Souvenir that will be
brought out to mark the occasion, please write, email or telephone the AFA office.

Learning with Aadit
Shirley & Vinoj Manning

Aadit, our son is now four and a half years old. At about three years he was diagnosed as being autistic. Soon thereafter we started the Weekly Intervention Program at Action For Autism (AFA).

Aadit is non-verbal but is able to communicate all his needs very well and in an appropriate manner. Thanks to Merry, Kumkum (Aadit's teacher at Open Door, AFA) and all at AFA we have learnt a lot in handling our child in an appropriate way. We are still learning and we need to continue in our pursuit to learn more so that we can bring up our child to live in an independent manner.

We would like to narrate some of our experiences, which we hope would benefit other parents.

1. The first lesson we learnt at AFA was to avoid using the word NO. Ignore unwanted behavior and always praise good behaviour.

Whenever Aadit would get angry he used to go and bang the door of the refrigerator. At first we scolded him for this behavior. This only aggravated the situation each time he needed to vent out his anger. We then moved the refrigerator to another corner of the house. But the behavior still continued though at a lesser frequency. Finally, we decided to ignore this behavior (at the cost of damaging the refrigerator - but thank God no damage was done). Each time he banged the door, he would wait and see if we responded. He consistently got no response on the next four to five occasions. And it has worked wonders!!! He never ever bangs the door of the refrigerator now.

1. Aadit loved playing in water. While in a swimming pool, he would refuse to get out when it was time to go. Similarly, at the park, if he were enjoying the swing or the slide, he would create a scene when it was time to leave the place. At AFA it was suggested we use timed preparation. So the next time Aadit refused to leave the pool or the park or any other place or thing that he enjoyed doing, when it was time to leave we would warn Aadit that he had five minutes to go.

2. A little while later, we would signal that two more minutes were left, followed by a minute to go. And then when it was time to go, lo and behold Aadit walks out quietly !!!

There are times when he does try very gently to see if we would give in. But no, we are consistent and mean what we say each time. So now no more scenes and he walks out very happily.

3. We have learnt to prepare Aadit for upcoming events that are difficult for him to deal with. For instance, as suggested at AFA we have kept a calendar on which Aadit is shown the day, date and month every morning after which he marks or crosses out the date. Very important events are told to him in advance and that date marked on the calendar in advance. Over the next days these events are talked about and reinforced every morning during calendar time so that he is prepared for them.

Aadit, like many autistic kids, hated the idea of a hair cut. There was a time when we had to hold him so that the barber could do his job. We tried all kinds of tricks like seating him in front of a TV, giving him favoured foods like toffees and cokes. The first time we had given him a packet of gems so as to distract him while his hair was being cut. Subsequently, when on a different occasion he was given Gems, he threw the pack and began to cry. It was only when this behavior was repeated each time he was given gems, did we realize that he connected the packet of Gems to the torture he felt when he had to undergo his haircut.

Kumkum then advised that we prepare Aadit for his haircut a week in advance by marking the calendar and showing him the date on which he was to go for his hair cut. We did so and told Aadit that the barber would style his hair on such and such a day, and he would look handsome like Shah Rukh Khan (Aadit's favorite actor) after the haircut. This was reinforced to him every morning during the calendar schedule until the day of the haircut. On the day of the haircut, though he was a bit afraid due to the sound of the scissors, he held on to papa but sat still without any sounds and let the barber do his job !!! Thereafter, all the three recent haircutting occasions with Aadit have indeed been very pleasant.

This idea of preparing Aadit for any event has not only helped us handle the haircutting event but also other sensitive issues.

Update on Open Door

A new Open Door project, the Mother-Child -Program, started this term as an experiment. It is a day school program where the mother comes with her child and is the implementer of a schedule of group and one- on-one activities. At the end of the school-day a trained therapist gives the mothers feedback on dealing with and teaching their child. The speed with which the mothers learn is what was anticipated when the program was launched. Nevertheless one cannot but feel moved each time it happens with a new mother!

Some of the mothers are now proficient enough to run their Programs almost completely on their own. This is an ambitious project and we are hoping that mothers from far flung areas of Delhi will take advantage of it. The aim being that when three or four mothers from an area get trained they will set up a unit in their own area. Interestingly, some outstation mothers have availed of the program as well and returned to their areas.

One family from Himachal Pradesh availed of the Three-Month program and have gone back. We wish them great progress. Three families, two from Bengal and one from Pakistan, are expected on the program in January. We look forward to welcoming them.

Three of the professionals at this year's training workshop - two medical doctors and a clinical psychologist - have taken the initiative to help set up services for autism in their states. More power to them!

In August Bente Johannsen visited us from Demnark. With more than forty years of experience behind her, Bente is not just knowledgeable about autism-related issues, she keeps an excellent balance and sees things from both the parent and the professional perspective. Bente visited Open Door and observed extensively and gave us feedback on our work: our work with the children, our interaction with families, our training of teachers, and also feedback on the feedback we give each other. It was very refreshing having a trained person from outside come and tell us what we can do to improve. It is inspirational and helps us to focus our energies better. Her visit was a great opportunity to recharge ourselves. She shared with us some great ideas and we learnt a lot from her. What we liked best was that she was very straightforward and outspoken and expressed her opinions clearly. And it is of course also motivating to have someone like her tell us what a good job we are doing!! We all need some appreciation sometimes!!!

We welcome two new therapists, Indrani Basu and Jayati Ghosh, who have completed their training and joined our staff, and Glenys Roberts who has taken over administrative functions.

Sandra who has been with Open Door since shortly after its inception married Abhrajit Bhattacharjee in Delhi. We join all the AFA family from across the country - and abroad - who have sent in their good wishes, in wishing the couple much happiness and joy.

Helpline

Q. My son was going to a normal play school till last session and now he would be going to a special school. However, we are not very sure how much support the school will provide as the school mainly deals with children with Mental Retardation. We are considering moving to the US.

A. I am curious as to why you took A out of the regular school. Did the school ask A to be removed? Till such time as you can take a decision to move to the US or not, you want A to continue at a regular school that is comfortable around him, while you continue working with him at home. This is just in case you decide not to relocate to the US.

As you yourself have noted, the special school that he goes to is not specially trained to deal with him anyway. So where is the advantage of putting him there. On the other hand if the regular school is comfortable having him then there is always the possibility of his continuing there. Getting a child into a mainstream school once he is older is always harder.

Oftentimes we are told by parents that as soon as their child received a diagnosis they removed him from a mainsream school and put him in a special school. Just because a school is called 'special' it does not automatically become special. A special school is a school that is equipped to help special needs children. If a special school is not equipped to deal with your child then it makes no difference.

I realise of course that it is possible that you had no option but to take your son out.

Q. My three-and-a-half-years old son has not started speaking yet. We are in touch with a speech therapist. In her opinion he is not yet ready to start therapy

A. Lets put it this way: Z is ready for intervention right now. The sooner you start the better. He does not require 'speech therapy' so to speak. Children with autism usually do not have any physical difficulties with regards to speech. Put simply, it is more an 'autistic inability' in using speech. What they really require is communication therapy rather than traditional speech therapy. However some speech therapists do figure out appropriate methods of teaching. If your speech therapist says he is 'not ready to learn' either she is not well aware of autism, or is not comfortable working with a child who is not easy and compliant. Which is fair enough, because we all have different teaching styles. What you can do is try and find a therapist or special educator who will be comfortable working with your son, and has a clear understanding of autism.

But finally, given the levels of misinformation regarding autism, you have to be knowledgeable about the disorder and about teaching methods because only then would you be able to tell whether what is happening with Z is appropriate or not.

Q. Have you come across anybody who got properly treated, cured or outgrew this.

A. Autism is a lifelong disorder. You do not get cured of it. But there are many individuals who have progressed to an extent that you would not know unless told that they have autism. They are able to function appropriately in their environment. Every child with autism who receives appropriate help will progress. We have seen children travel amazing distances. However some will progress more than others will.

Buy an Action for Autism tee shirt and help support us in our efforts to create a society that is accepting of persons with autism. Just Rs 150/- for one!

 

Letters to the Editor

Munira and I would like to compliment all at AFA for the great work you all are doing. Also we do get a lot of encouragment and inspiration from the interesting write ups and articles in Autism Network.

As parents most of us want to create savings and growing investments for our children. Most investments in the name of handicapped children, however leaves us with a concern. How do we handle the matter when the minor child becomes a adult of 18 yrs. Since the 'adult' is now expected to sign.

I am pleased to inform, that on sharing this with 'Tata MutuaL Fund', their General Manager, Ms. Latha Rajaraman (at their H O: Mulla House, Mumbai) was most considerate and agreed to make an exception to allow the Parent/Guardian to sign the discharge on behalf of the special child/adult. I am referring to their scheme called 'Tata Young Citizens Fund' which has the flexibility of allowing investments even in small slabs. This scheme has had a very good past record of doubling the investment in three years. I am disclaiming any 'implied' fixed returns nor am I an agent/ canvasser; it is for the parents to evaluate the scheme. I am making other parents awareof the 'special provision', so that they may make an investment based on their own judgements. They however , need to make a special note on their application form and route it through Ms. Latha for her to add her instructions on the form.

You may visit them at:
WEBSITE: WWW.tatamutualfund.com or
EMAIL: kiran@tatamutualfund.com "

ZAKIR HUSSAIN
Mumbai

I'm back in Goa feeling totally energised after attending the workshop and meeting you all. What a job you guys do! Really, I cannot stop telling my colleagues about my experiences in Delhi. You all are an inspiration and those of us who work in the field of autism in India couldn't have a better set of leaders and motivators than you. Keep up the great effort and we hope to see you in Goa in 2001. Thank you all for one of the best weeks of my professional life!

DR NANDITA DE SOUZA
Goa

Congratulations on the renewal of your website. Great Job! Many parents with new diagnosis have been looking forward to opening the renovated website. I like the FAQ part the best. It is a sea of information. Keep up the good work. Thanks for being an fathomable sea of information.

DR ( MRS.) VIMAL J. THAKUR
New Delhi

Congratulations on the latest Autism Network and on your attractive and informative home page. To Merry Barua our special appreciation for your part in bringing AFA and all its activities from those first desperate yearnings to this ever more powerful organization.

BERNICE & DANIEL SINGER
Israel

I have joined a parents' support group here and wanted you to know that I noted that print-outs from the Action For Autism web-site are in circulation.

SUPRIYA GUHA
Switzerland