N E T W O R K
April 1999 Vol. VI, No. 1
Secretin is the flavour of the month. Queries, and information, on
Secretin have inundated us. In our series on therapies we cover various
treatments for autism, leaving to the family or the individual with
autism the selection of the best treatment or service option in their
particular situation. We support all efforts to discover effective ways
of improving the lives of our loved ones with autism and, while we often
strike a cautious note, believe that families everywhere have the right
to that information. This issue features briefly the issues relevant
to the use of Secretin.
In August 1998 the Ministry of Social Justice and Empowerment constituted
a Committee to suggest amendments to the Persons with Disabilities Act.
I have been pulled up sternly by the Chairperson of the Committee Dr
Amita Dhanda for having failed to make any reference whatsoever to the
Committee and its work in the last issue of the journal. My apologies
to Amita for the oversight and I hereby make amends.
The Committee, comprising of the Chairperson Dr Amita Dhanda and members
JP Gadkari, Aloka Guha, Dr DK Menon, R Ramachandran, SK Rungta, Surrendar
Saini, and myself, was directed to review provisions of the PD Act and
suggest suitable amendments in the existing provision, or new provisions,
in order to cover the requirements of the disabilities sector; as well
as any other issue considered appropriate. In this task the Committee
was asked to consult with State governments, Union Territories Administrations
as well as major non-governmental agencies before finalising the recommendations.
In order to make the effort as consultative and participative as possible,
a flexible time frame, giving the committee time to complete its task
at the earliest without compromising on the quality of the work, was
decided on. Members of the committee wrote to their contacts and associates
inviting responses on various provisions of the act. The Committee drafted
71 pointed questions on the key areas covered by the statute. The questions
were shared with other experts for further inputs and also forwarded
to the Ministry to obtain feedback from Central Ministries/Departments,
State Governments and Union Territories. Based on all these inputs the
Drafting Committee consisting of Dr Amita Dhanda and Mr. Santosh K Rungta
prepared an interim report that was submitted to the Ministry of Social
Justice and Empowerment.
The draft proposals were also sent to legal, financial, and medical
experts, to seek feedback on specific sections of the Act. Four regional
consultations were held on the draft proposals with the endeavour to
make the consultations as disability and region representative as possible.
Based on the inputs from all these diverse sources the drafting Committee
worked out a report, which was finalised by the committee at its ultimate
meeting on 3 and 4 of March.
While the final report of the Amendments Committee is now with the Ministry,
all those who participated in the Consultation can access copies of
the report, by writing to me or any other member of the Amendments Committee.
An Update on Secretin
Secretin caught the public's imagination after Dateline did an interview
with Victoria Beck, the mother of an autistic boy named Parker. Parker
showed remarkable improvement after a chance dosage of secretin administered
as part of a series of tests conducted on him to investigate his chronic
gastric problems. Prior to the secretin, Parker, then three years old,
had poorly formed stools, poor eye contact, and was largely nonverbal.
After the test, Parker's stools became normal, he was calmer, slept
better, and after two and a half weeks, language appeared for the first
time. Within weeks, he was potty-trained almost effortlessly. He showed
an interest in drawing for the first time. He was far more responsive
to his environment. His parents were convinced that the secretin he
had received had played a role in his astounding growth, but found little
support from the medical fraternity.
In November 1996, another parent reported positive changes in his son
after being given the secretin challenge test as part of his endoscopy--
and the secretin connection began to take hold. Many more parents around
the US (about 120 recorded cases) started their children on secretin
without explicit medical sanction-- the FDA has not specifically approved
secretin as a treatment. Varying degrees of positive changes in both
the gastro-intestinal symptoms and the social and communicative behaviour
of autistic children have been reported. There is mounting interest
in conducting further investigations to extend these observations and
explore the underlying mechanisms. However, it will be some time before
substantive, non-anecdotal and impartial data is available.
Secretin is a naturally occuring hormone produced by the small intestine,
and is involved in the regulation of gastric function. It is prepared
from the duodenal mucosa of pigs. It has a dual role in the delicate
dance that the endocrine glands play in our digestion. Firstly, it stimulates
the pancreas to produce various enzymes that play a role in breaking
down complex peptides. It also produces bicarbonate, which neutralizes
the stomach acid and allows the enzymes in the duodenum to function.
There are many hypotheses on how secretin may help. One is that as secretin
stimulates proper digestion and assimilation of foods, it may help nourish
the brain and protect it from neurotoxins in foods, which, according
to proponents of the opioid excess theories of autism, may be responsible
for the problems. One way to diminish the problems caused by these is
to remove them from the diet, which is why people experiment with gluten
and casein free diets.
Another hypothesis is that secretin stimulates the production of serotonin
in the brain, which has been found to be abnormally low in some people
with autism. Serotonin is responsible for many functions in the brain,
including the regulation of arousal, attention and learning.
Secretin is currently administered through IV infusion. Although secretin
is generally considered safe for a singe dose diagnostic use, no data
has been submitted on its safety and efficacy for children. Dr. Kalle
Reichelt of Norway cautions that, "...not even the most elementary
animal tests with repeated injections has been done." No double-blind,
placebo controlled studies of secretin have been conducted. No optimum
dosage or recommended frequency of infusion has been done. Research
on the efficacy of secretin is critical. Secretin is hard to get, even
in the U.S., as it does not have FDA approval.
Dr. Reichelt adds, "I am not disputing the effects (of improvement
in children with autism), but want to be safe. There is a vast difference
between removing something and repeatedly injecting a compound not studied
at all with repeated injections over probably years. I would therefore
not use this before some elementary studies on repeated IV use have
been done in animals. I would also make sure I only used the human secretin
before the possibility of inducing antibodies has been excluded. The
present preparation in only to be used once for diagnostic purposes,
no one anywhere knows what repeated injections will do. After all, this
is more pharmacological than physiological use. Usually antibodies will
cross react, which would mean that the children thus treated would have
less effective hormone than before treatment. This disaster happened
with insulin. Even the exogenous hormone (secretin) would gradually
lose its power and anaphylactic reactions are to be expected."
Readers interested in more information can look up the many web-sites
carrying regular updates on secretin research. We would like to caution
you, however, that unlike standard medical journals that have a panel
of expert editors to ensure the veracity of published material, most
web-sites have little or no monitoring. Enthusiastic proponents of various
therapies vie with each other to carry more and more exciting stories
of recovery. Parents have to use their own judgment.
To quote Paul Shattock, Autism Research Unit, UK and a parent:
-The drug without side effects does not exist. Secretin has not been
used over periods of time so we don't know what will happen when it
is. With products as complex as this we should expect them to occur.
The benefits/advantages ration will have to be taken into account.
-There are some children with whom no effects are seen anyway.
-This could be a significant contribution or it could turn out to be
yet another gross disappointment. We will have to wait and see on this
one. "There is no doubt that this is an interesting development
but we will have to see if it pans out. There is biomedical plausibility
about the mechanism and results seem promising. Since the material is
not readily available and it is not licensed for this particular use
at the moment anyway, we have little alternative than to monitor progress
with interest and some cautious optimism."
We want to keep in mind that even while Parker continues to be administered
his doses of Secretin, he alongside receives 35 hours a week of intensive
behavioural therapy at his house and school. Structured behavioural
and educational intervention is the tried and tested option available
Challenging Behaviour - An Experience
Vivek, the younger of my two sons, was three-and-a-half when his diagnosis
of infantile autism was confirmed by Dr Shoba Srinath of NIMHANS, Bangalore.
We have had to deal with much somewhat challenging behaviour during
these years. We have been successful in extinguishing many such behaviours.
Our strategy has always been to be positive in the approach.
A wonderful lady who had years of experience working with nursery and
kindergarten children showed me that practically all children found
learning a joy given a conducive environment. The positive attitude
of adults around helped them to grow into well-adjusted happy lot. In
the one year that I spent in her school with Vivek I learned to see
my son as a child and his autism later.
The following account of a challenging behaviour that Vivek had at the
age of 5 years and how we handled it may help some other parents faced
with such behaviour.
Vivek like colourful pictures and could identify quite a few common
things seen around. So I used to show him picture books and magazines.
These were accessible to him whenever he wanted to look at them. But
one day, to my utter distress, I found that he was tearing the pages.
The first thought which came to me mind was of losing my good books.
I collected all the good books and put them in a cupboard and locked
it. But I realised that if I deprived him of a pleasurable activity,
he might find some other activity equally unacceptable to me. So why
not let him have his fill in an unobtrusive way!
I left some old magazines and newspapers in the study table cabinet
in his room that he could open. Periodically he would go to his room,
open the cabinet, take out the papers and tear them. While he was at
it he was left alone. When he finished and went out of the room I would
just collect the papers and put them back into the cabinet.
We wanted him to have the opportunity of looking at the pictures and
learning from them. I was thinking of getting some kind of book that
wouldn't tear easily. But as you know, these children can be quite willful,
so it had to be something really tough. I found my answer with a neighbour
who used to stitch her own garments: Bakram, the stiff material used
inside collars, etc. I bought a few meters of this material and cut
it into foolscap paper size, folded and stitched it in the middle to
make a book. Next I cut out pictures from charts and stuck them to the
pages with fevicol, and Vivek's picture book was ready. I could give
it to him without getting uncomfortable and he had the chance of looking
at the pictures whenever he wanted. We got some charts with pictures
of animals, vegetables, fruits, transports, etc. laminated and cut into
cards so that they wouldn't tear easily.
All this while the study table cabinet was getting full with torn pieces
of paper. It had reached a point where there were no more magazines
and newspapers, only torn pieces of paper inside. The routine of Vivek
tearing the torn pieces into still tinier ones and me sweeping them
into the cabinet continued for weeks. And one fine day I noticed that
there were no pieces of paper on the floor next to the study table for
me to put back. The room stayed that way for many more days before I
decided to clear out the cabinet.
During these weeks he used to handle his Bakram book, looking at the
pictures and turning the pages and I would let him handle the laminated
cards in my presence while showing him the pictures. I slowly introduced
hardbound books, followed by ordinary ones. He never went back to tearing
them. Now he handles all kinds of books and paper properly and continues
to enjoy looking at pictures, especially food items!
We continue with our positive attitude. Vivek is now a very independent
9 year old happy boy, continuously learning to cope with the world around
him, despite his disability.
Toilet Training: Learning to Wash After a
Perhaps the ultimate step when toilet training a child in India is
teaching her to wash herself after defecating. Washing oneself is a
fairly advanced skill. We expect it from a regular child at around the
age of five years. With an autistic child it can take longer. Once a
child learns to sit on the pot comfortably, whether the floor pan or
a commode, starts using it, and we are sure of the child's physical
skills, we can start working on her washing herself.
A successful programme would be one that involves the following.
1. Break the activity into steps and teach only one step at a time.
The steps involved in the process of washing oneself are filling water
in the mug, pouring water on self correctly, and then finally cleaning
oneself by rubbing with a hand.
2. Backward chaining can be used. Start with the last step first, so
the child first learns to move her hand in order to clean herself, then
learns to pour water, and finally fills the water into the mug and pours.
There are certain things that we need to keep in mind while working
on washing after a big job. For instance, a child may have a fascination
with water and may become so engrossed in playing with water that he
forgets or is not interested in the washing process. We can find creative
solutions to these obstacles. We can say something like, "We shall
wash and then play with water," and hopefully, the child will then
be motivated to wash so that she can play with water after she has done
Let's see how we actually teach the child to wash. To teach a child
to rub her bottom with her left hand in order to clean it we initially
use both verbal and physical prompts. We place our own hand over the
child's and manipulate the child's hand along her bottom, pouring the
water ourselves. Simultaneously, we give verbal prompts that are very
clear and precise: 'rub bottom,' or 'move hand,' whichever works with
our child. Over a period of time, anything from one week to three months
or more depending on the individual child, the child will start initiating
some of the movement of her hand. As we sense the movement, we begin
to loosen our grip on the child's hand.
As the voluntary movement of the child's hand on her bottom gets stronger
and she appears to 'take charge' of the movement, we gradually move
the light grip of our hand away from over her hand. We had started with
our hand directly over the child's moulding her fingers and the movements
with our own. Now we slowly give up control, moving our hand slowly
up to the wrist, then up the arm, elbow, and finally, to a slight pat
on the shoulder along with the verbal commands. With some children we
can fade the touch of our hand away by the time our hand is on her forearm;
others might need the prompt longer. When we are sure that the child
can move her hand, we just give verbal commands: 'move hand,' 'rub bottom.'
With time, even the verbal prompts are faded away.
In the initial stages, after we have physically guided our child's
hand on her bottom, we will have to clean her up ourselves. However,
we praise our child for doing a great job of cleaning her bottom. With
many children, after they have learnt to independently move their hand
on their bottom in a cleaning motion, they might still not be cleaning
themselves thoroughly. We do not then say, 'You have not cleaned properly,
let me clean you up.' That would be completely de-motivating. We have
to remember that she is learning a new skill. She is making an effort
to be independent by moving her hand on her bottom appropriately. We
want to appreciate the effort at independence. So what we do instead
is say, 'Great cleaning,' or 'Good cleaning;' we want to praise her
before finishing the job off ourselves.
It can take a child anything from one month to nine months or even
more to master the above.
Now that we have our child moving one hand independently on her bottom
the next step is pouring water and cleaning - both to be done by the
child. If the child has difficulty with her motor skills, then it would
be a good idea to spend some individual teaching time in activities
like holding objects, turning caps of bottles, learning to pour water
from one container to another in a controlled manner, and so forth.
Here also we teach the child to pour water from a full container using
hand-on-hand method and giving verbal prompts, 'Pour water.' Gradually
we fade away the prompts. Here again remember that praise is a great
However pouring a full mug of water on one's bottom from behind is
somewhat tricky. We give the child a full mug of water, and while she
uses one hand on her bottom we hold the hand holding the mug and physically
help her to pour the water over her bottom. As before we slowly fade
our hold over our child's hand praising her for 'good pouring.'
The final step is filling water in a mug, pouring it and cleaning. We
teach the child to turn the tap and fill the mug. With some children
we might have to use a bucket already filled with water instead of the
tap. Using simple instructions like, 'fill the mug' we go through the
earlier steps of physically prompting and then slowly fading the prompt.
Gradually the child learns to do all the three steps independently.
Parents often ask us if it would be better to use toilet paper or invest
in a toilet jet that functions somewhat like a bidet. Both the above
are simpler procedures involving far fewer complicated maneuvers. If
the child has difficulty holding a mug and pouring, a toilet jet really
simplifies matters. In deciding which option to go for, we want to keep
in mind that a successful toileting programme aims at making the child
independent in every environment, both at home and outside the home.
Very few places in India will have toilet rolls in public toilets. Even
fewer will have toilet jets. Most private homes would not have either.
So we either decide that our child never goes out with us on outings
or visits to friends' homes where washrooms are not suitably equipped;
or we teach our child to wash with water. The decision is ultimately
As a child learns the skill of washing after doing a big job he is
moving towards greater independence and that is important for her own
self -esteem and also for making our own day-to-day living comfortable.
To achieve this, we want to be very regular, persistent and consistent
and maintain a lot of comfort while teaching this very important self-help
Life Behind Glass
by Wendy Lawson
Written in a disarmingly simple style free from technical detail, this
book is a deeply moving and authentic account of one woman's heroic
struggle against difficulties within and without. Misunderstood by even
her family, Wendy Lawson was misdiagnosed as a schizophrenic and had
to wait till 1994, when she was forty-two for the correct diagnosis
of Asperger's syndrome. This is a particularly unsettling fact since
the error must have condemned her to wrong treatment for a long time.
Made to realize her 'difference' from childhood both at home and the
many schools she attended, Wendy experiences in her teenage an urge
not to be different anymore. No doubt this change stems from her appetite
for knowledge which drives her to interact with people around her. But
her attempts at socialization fail at this stage because of her impaired
social skills, and the resulting trauma plunges her periodically into
bouts of withdrawal and depression. Attempting suicide and undergoing
institutionalization, she nevertheless manages to surface each time
and triumph over each setback. Even as a child, Wendy copes with the
brutalities of school life, sexual abuse and academic failure. While
her experiences reveal the savagery that underlies civilization, what
is not often recognized is the autistic person's unique capacity for
minimizing emotional injury. Here a limitation is turned into an advantage.
As Wendy puts it in a tone of self-assurance: "Dr. Asperger may
have defined the syndrome I was born with, but I have decided his descriptions
of my limitations will be the means to remove the bars from my cage
- not reinforce them".
The so-called limitation refers to the autistic person's tendency to
distance himself from emotions. As Wendy confesses, kindness, affection
and intimacy had a
confusing effect on her. Unable to distinguish one emotion from another,
Wendy teaches herself to observe and interpret the behavioral signals
of different emotions. One of the reasons behind her relationship with
Tony, which results in marriage, is precisely the absence of an overpowering
physical attraction: this has a curiously comforting and reassuring
effect on both of them. During this period, Wendy becomes a great admirer
of Maggie, a church friend, enchanted as she is by the musical and artistic
abilities of the latter. By contrast, on the eve of marriage, "connection
to Tony... and the reality of a lifelong committed relationship - with
all that it entailed - was far from me". When they return home
after their honeymoon, Wendy suffers an attack of depression and for
the next two years she drifts in and out of it. Eventually, despite
an earnestly undergone motherhood, the marriage fails. But Wendy manages
to surface again and succeeds in acquiring even a university education.
In the very first sentence of the book, Wendy describes the autistic
individual as a perpetual onlooker who observes without being able to
reach the world which
passes in front of her shielded by glass. The difficulties she mentions
are all characteristic of Autism Spectrum Disorder, involving sensory
stimuli, emotional confusion, obsessive compulsive behavior, the desire
for sameness and constancy and so on. It is this yearning for routine
that had drawn her to the profession of nursing, but as soon as the
prospect of taking decisions loomed up she chickened out. On holiday
at a caravan park, she was afraid to sleep in case the caravan started
Such symptoms are, however, well-known and the book does not throw
any new light in this area. The originality of the book lies elsewhere,
not in the mere contents but in the form and mode of presentation. Most
books on autism are, not surprisingly, written by specialists, teachers
and sympathetic observers like parents. While these have considerably
deepened our understanding of the disability, they remain necessarily
confined to the point of view of the outsider, no matter how concerned
and enlightened he or she may be. But what does the world look like
for the autistic person ? This book provides a fascinating answer to
that question. The reversal of standpoint becomes Wendy's fundamental
strategy for surfacing: the so-called symptoms identified from the outside
become the interpretative tools with which she constructs her identity
through an ever-extending consciousness of the world around her .
If the autistic individual's ability to generalize is impaired, then
his or her immersion in the concrete becomes the very mode of defining
Wendy's physical universe. She is intoxicated and soothed by colors,
textures, and gentle noises. Whether it is her red bicycle with spinning
wheels (a gift on her eighth birthday) or the variegated colors and
textures of food (carrots, potatoes and green beans) or the low voice
person or the textures of leather, silk, fur and so on -everywhere experiences
are recovered in all their concrete immediacy. The culminating point
is reached in the description of the cicada crawling out of its larva.
Not only does this entire process of one and a half hours keep Wendy
absorbed in its miraculous beauty but she
even connects the cicadas "surfacing" with her own.
Inability to generalize thus prevents the deadening effect of habit.
Moreover, it is put to great advantage in the mode of recollection that
dominates Wendy's narrative. The discontinuous structure of discrete
memories is consequently not a weakness but a strength, holding up a
faithful mirror to our mental life. It is not entirely fortuitous that
Wendy's method approximates to the fictional technique of stream-of-consciousness:
in fact, the succession of memories (especially in Chapter 4 of school-life)
recalls the modernist mode of composition adopted by Proust or Eliot
The characters around Wendy are not captured in terms of a dense cultural
context: they are somewhat disembodied presences, voices, as it were.
This could be traced back to the autistic person's lack of connectedness
with the conventional social world. But the paring down of contextual
detail enables Wendy to cut right through
pragmatic negotiations to the essential humanity (or the lack of it)
of the characters. Her response to these evanescent characters (not
all of them) makes us look at reality through the filter of her consciousness.
In the ultimate analysis the book seems to suggest an alternative cosmos
in consonance with the autistic point of view. She agrees that her inside
view of the hopes, dreams, strengths and weaknesses of autistic people
may help us gain a deeper and rounder view of human nature. She acknowledges
the help she receives from her friends. For instance, Ruth explains
to her that she is not different people at different times, but the
same person with different aspects. There is just the hint of a generalization
here. Nurse Lesley's influence turns her towards religion; later, Wendy
tells us that God became a baby because "that way he had a better
chance to touch the stubborn, proud hearts of the human race".
A way out of such self-deceiving pride is discovered in animal behavior.
It is this intellectual vanity that is seen in terms of an impairment
for which autistic experience may well offer a remedy: "who can
say what is 'complete' and what is
lacking? It may be that some of us just view life differently and, therefore,
actually help to make up for the 'lacks' that others experience."
Update on Open Door
Following a fun Christmas Party and the winter break Open Door moved
two doors away from its earlier location. The new place is well structured
for everyday activities though still cramped by a limited budget! The
Space Club, a group of ladies who have been helping with the work of
AFA, decided to give the children a treat. They were invited to a puppet
show with music, scrumptious eats and gifts for each of them. A grand
time was had by all.
The Open Door outreach continues to grow. There are currently 60 children
attending various programmes at the centre not including the 30 or so
others who attend whenever they can from various places.
Jannik Beyer, headmaster of the Brondagerskolen in Copenhagen visited
Open Door and met some of the children, staff and parents. Later Jannik
conducted a workshop for 60 parents, teachers and persons with autism
at the India International Centre, which he illustrated with some wonderful
video footage from his school.
A very exciting development is that a growing number of families are
doing intensive home programmes with their children. Some of them are
now contemplating sharing and working with each others children at the
old Open Door location. More power to them!
Finally, this Update will close with a tribute to the fantastic team
of therapists at AFA. Their love for and enjoyment of their work, is
a pleasure to experience and be a part of. When families have left for
the day once sessions are over, to have a teacher come bounding into
the office, jubilant, celebratory, cheering "My Angad did three
today!" is nothing short of a special high. To hear this at the
end of a rigorous, vigorous six hours starting at 8am, and for some
of them continuing till 5pm with a brief break, need people with a special
commitment and love for their work. And while AFA works to empower parents
we want to take a moment to thank the very special staff who make much
of our work possible.
To enjoy life and have fun is the right of every child very often children
with Autism and their families live lives of isolation as relatives
and friends do not understand their children's behaviour and they miss
out on a lot of fun and lighter moments in life. AFA has always been
working towards getting families of autistic children together with
other people from the community to strengthen affectionate bonds between
our special kids and the minutes to write out community they live three
things that they in. During the past two to three years, friends of
AFA have increased in numbers and together we organized get- togethers
and concerts that have hits.
Last December, always a time for and clapping and parties (!), AFA
decided to hold a Christmas party for families of children attending
the various child waited Intervention Programmes at the Open Door. Anu
Bakshi, a friend of AFA who always comes up with great ideas to bring
happy moments to our kids, offered to host the party. On the 22nd of
December over twenty autistic children from our programmes, their parents,
siblings, cousins, grandparents, aunts and uncles attended the party
along with the teachers and volunteers of the Centre.
The party room wore a truly festive look with colourful cutouts on
the walls. Someone had brought along a little tree and a table was covered
with coloured paper and heaped with gifts that Anu had thoughtfully
organised for every child at the party - our students and their siblings.
It was a time for fun. The children enjoyed the games, singing Christmas
carols, and had lots of things to eat: chips, biscuits, buns, cheese
sticks, and above all, a Christmas cake baked by the fabulous Claire
Dutt especially for our kids in the shape of a Christmas tree ! With
her rousing action songs Sarah even had the usually sedate aunts and
grandparents swinging their arms and their bodies and heads with as
much abandon and enthusiasm as the children. It was a sight for sore
The highlight of the party was a game for parents where each parent
was given a slip of paper, a pencil, and two minutes to write out three
things that they loved about their child with autism (see the end of
article, 'Some things that parents wrote'). When parents then took turns
to read out their spontaneous thoughts about their children there were
many lumps in throats and clapping and cheering.
And then it was time for the gifts. Each child waited expectantly to
hear his or her name called out clearly and distinctly, and then the
chant taken up by all: 'Kar-thik, Kar-thik, Kar-thik, Kar-thik...Mik-koo,
Mik-koo, Mik-koo, Mik-koo." In rather typical autistic fashion,
some kids did not really care about their gifts. But they all wanted
the excitement of their name called out and chanted as they went up
grinning or smiling shyly to Anu. The gifts were all clearly labeled
with the children's names, so most of them had fun picking out their
own packets, too. The older boys announced that it was a great party
and could they have more such occasions. this was not just a party but
also an excellent opportunity to convey the message that God wants his
autistic children to participate in times as joy as much as He wants
the others because He loves them as much as He loves you and me. What
a great way to end the year!
Some Things Parents Wrote About How Special Their Children Are to
* My child has helped me to celebrate the gift of life and the joy
of living. Through him I have learnt to give unconditional love.
* He has widened my horizon; enhanced and developed me as a person;
helped me to find myself as a better person through his silent loving
* He is special because he is mine!
* He makes us smile whenever we are down and out.
* He changed us into better human beings.
* My children have taught me to be a better person and made me discover
things in myself I did not know I possessed.
* He is so special to us because caring for him has given us a deeper
and richer understanding of the world in which we live. Most of the
average ambitions of life have become insignificant; that has given
us a sense of proportion that would have been otherwise impossible
* He showed me the path to true happiness.
* Because he has the most gorgeous smile!
* My child has made me stop and think about the things that are really
* He has made me live in the present.
* He gives me a new view of everything around me.
* He made us develop a very beautiful and special part of our personality
and life, which we never knew existed
Why a Support Group
For many of us who have a family member with autism, the only families
that we are truly comfortable around are other families like us. These
are families to whom we do not have to apologise for our child's behaviour
. These are families who don't look askance when our child spins 79
times in one hour, or says, 'say good boy' 'say good boy' right through
a visit. And these are often the only families with whom we can sometimes
share the humour in our life situations.
Yet because of the enormous distances in Delhi or due to the frenetic
pace of life, of all the hundreds of families in touch with AFA, only
a very few were interacting with each other.
Deepak and Roma Verma decided to do something about this. And as a
result of their initiative we now have a recharged group of parents.
Already three enthusiastic meetings have taken place of which the last
was a super picnic at Lodi Gardens.
There are various expectations from the meetings. The prime one of course,
to quote a member of the group, is "to create a close community
of families of autistic children, parents and children working together,
enjoying picnics and other outings at many places in India, to develop
a sense of an extended family amongst ourselves."
There are many other concerns. "We read books - learn about various
therapies but when and how do we go about (implementing) it." Which
gets answered with "Interaction with the other families and learn
from each other
meet and discuss specific problems,
(receive) advise and guidance." "Being a working mother my
prime concern is having a pool of therapists (can be young graduates
/ diploma holders) who can help in spending an hour or so on a daily
basis with the child." "Build area-wise groups." "Concretize
plans for (the) National Centre" "carrying on many activities
for autistic children" "where all local/ state centres can
be associated with us."
But the most important one is as one parent put it, "
to know each other- children and parents and siblings - become a resource
for each other." Many of the parents of younger autistic children
who also have regular kids feel, 'Oh my child does not need anyone.
He has his sister (or brother). " But as those with grown up children
know, siblings are not there forever. Siblings grow up, have their studies,
their careers, their lives. Even though they love their autistic sibling
and want to do things with them they don't have the time. So when our
kids are older they are lonely and alone.
But if we learn to be a resource for each other then my child with autism
can go to spend the day with a friend whom he is comfortable with, and
more importantly, whose family is comfortable around him.
Siblings of our autistic children too need this networking. Very often
they feel confused about having a brother or sister with autism. And
they need to meet other young people like themselves who too have an
autistic sibling. With them they can share their confusions, frustrations
and anger and know that there are others like them out there.
All this has to start with families just getting to know each other.
And from building such ties, such sharing and bonding, families can
develop and build on dreams of adult living centres, vocational centres
and other services for our children with autism, for which parents ultimately
have to take the initiative.
Abhinav Accepts His Sister
Dr. Preeti Singh
Abhinav, my son who is 5 years old was in Delhi attending a school
when his sister was born in Rajasthan. Abhinav is non-verbal and is
a rather sweet- tempered child. As soon as the little one was one month
old I came to Delhi to be with him. My uncle came to receive me at the
station and after reaching me home he stayed back just to see Abhivav's
reaction. When Abhinav saw us there was no reaction whatsoever and I
gave him a big hug, kissed him and told him how thrilled I was to meet
him. When all my relatives had left and baby and I were in the bedroom
he came and gave me a kiss and kissed the baby, so we were very happy
thinking that he was happy to see us. Very soon our belief was dispelled
when baby after the long journey was tired and was crying so he was
perturbed and came running to slap her and we were able to prevent it
from happening just in time. Then he showed tremendous signs of jealousy.
Whenever he saw us holding the baby he would throw tantrums by hitting
us or just by throwing things. So what we did was as soon as it was
time for Abhinav to come from school, we moved the baby upstairs so
that he did not see the little one being cuddled and held. Gradually
we took her out in his presence and then he would come out and just
sit beside her and touch her little hands and feet with a smile. Now
with time he has stopped throwing tantrums and sometimes he comes to
give her a kiss.
Q. My son D is born blind and has severe
autistic tendencies. There is hardly any material or information available
on blind children with autism. Only recently National Association for
the Blind (NAB) Started a programme to help children like D. This is
a home-based programme
still at the experimental stage.
D's mobility is good and he has developed good sense of touch and smell.
He performs daily chores himself. He has a good memory, but his attention
span is very short. Sometimes he throws a severe tantrum and sometimes
he is very euphoric. His social awareness is minimal. Though his speech
has improved over a period of time, his communication skill is undeveloped.
How can we deal with his handicap?
A. It's great to see that the NAB has
started a program for children like D, even if it's at an experimental
stage. The main areas we want to work on are communication and socialization
with D. Here are a few things we could do.
1. Speak slowly and clearly. It is important for him to have the complete
and accurate sound. That will help him to express what he wants to in
a similar way, in other words, clearly. Many time children do not respond
verbally because though they can understand what is being said they
are not equipped with the words that will help them to respond.
2. Give clear instructions. Know exactly what you want D. to do and
make your instructions specific.
3. Sometimes you might need to break instructions down to simpler steps
depending on how focussed he is. For example: You are in a market place
and you are telling him to put back a box that has accidentally fallen
down. He does not respond. Break down the instructions into steps. "Bend
down." "Feel the Box." "Pick up box." "Keep
it on the shelf here"
gently tapping the place where it is
supposed to go.
4. Another reason for non-focus would be that children with Autism
have certain sensory sensitivities. For instance, if you and I were
having a conversation in a room, apart from us talking to each other,
there are other sounds and noises, say, the traffic outside, the fan,
even the movement of someone around. But, during the conversation, we
choose to filter out what we don't want i.e. sounds and noises, and
focus in on the conversation we are having. Children with Autism have
a difficulty in filtering sensory information. Being clear and slow
in our instruction to the child goes a long way in helping them to respond
5. Also we want to inform our child about changes, for instance, if
we are going to visit someone or even going out of station, we want
to inform and prepare our child before hand. Tell them, "Today
we are going to Khanna Uncles place for tea for two hours, we want to
In life we all want to control our environment, we do this through
communication. Children with autism also have the same want, but because
of their communication disability are unable to come up to us and say
it. It is because of this lack of control that we often come across
unwanted behaviour or "severe tantrum". Since we know this,
a great way to work around this with your child is to give him choices-
realistic ones. We want to follow through with the choices we give our
child, example, if we as a family are going out, then giving my child
a choice like, "Do you want to go with us or stay at home,"
(when everyone in the house has decided to go) would be unrealistic.
When we are giving a choice to our children we most definitely want
to stick to it. A realistic choice would be "Do you want to wear
your sandals or your shoes" or you could say, "Do you want
to go with Mama or with Papa?
Another way of dealing with this is by helping him to understand what
to do with his time. We want to inform our child about what to do? How
much to do? When will it finish? After finishing then what? Giving structure
to the child would be most ideal. The first thing that structure does
is it helps the child understand his environment. When he understands
his environment, he learns better. Structure also in the long run provides
independence, because our child learns what to do and when without being
told. We could structure play, work, or any other activity that the
child may be involved with.
If you were to visit Washington. D.C. and had absolutely no clue about
the place, what would you do? Wouldn't a map make it easy for you, rather
than you getting confused about what to do? Structure for the Autistic
child is just like that map for you.
Structure his time by providing a schedule to follow
A schedule tells the child what to do and what to do next? It could
be a written or picture schedule. Since D is visually impaired an object
schedule would perhaps work best.
Have a rack or shelf accessible to him, with a basket below it or just
next to it. In the sections of the rack put the things you want D to
do. For example, in the first shelf have a ball (indicating play), second
shelf have a cassette indicating that you would want him to listen to
music, in the third shelf have a plate and spoon (indicating to go to
table for food). The idea is for him to follow either a top to bottom
or left to right method of picking things up that will cue him into
what to do. D begins by going to the shelf and picking up the object
on the top shelf. He does the activity. After finishing, D comes back
and puts the object into the basket and then carries on to the next
shelf, e.g. After playing with the ball, go to the shelf, put the ball
into the basket, take the cassette and go listen to music. D wants to
be told how much to do ( one cassette completely)and when the activity
will finish( when both sides have finished playing). This gives completeness
to a whole process. D will get the message, "I FINISH THIS, THEN
I GO TO THE NEXT STEP".
Initially we want to work with the child and give him simple and clear
verbal instructions, slowly fading our verbal prompts. For instance,
" D lets check schedule, (take him to the shelf). When you are
at the shelf, move his hands through the shelf and say, "D will
play with ball first (let D touch ball), do this activity (touch the
tape), then have lunch (touch plate and spoon)". First, D will
play with ball for 5 minutes, then go check his schedule. Initially
play with him, after 5 minutes are up (to give D a clue you could set
an alarm clock for the 5 min duration. When the alarm rings say, "
Playing with ball finish, time to check schedule". Go to the shelf,
"Put ball in basket, check schedule (touch activity tray) and say,
"activity time", take him to the area you want him to do the
activity and repeat the process as mentioned earlier.
Structure his environment
It is best if D has a fixed areas to work, relax, eat, sleep etc..
This schedule could be changed as and when you want, with what you want
-depending on the day. As you are aware children with autism have a
need for routine and sameness and a need for control is always there
as mentioned earlier. A schedule works around that, it gives our child
a structure to follow and us the control to get what we want the child
When we do activities with D we want to have excitement and energy
in our voice. We want to present our activity in such a fashion that
D would want to do it. But in all this we want to be clear and concise.
Choose your words, formulate your sentences before speaking to D, this
way you have D understanding you and knowing what to do next.
We will be sending you a few notes on teaching tips and how to work
in structure: where you are asked to work with cards or picture, use
Q. Please give suggestions on the following:
improving my son's his behaviour; difficulty in teaching, particularly
math; using of drugs to control hyperactivity; he feels bad to be around
Down's syndrome and mentally retarded children.
We can understand your anxieties about P's behaviours. As you are aware
autism is a behavioural syndrome in which social and communication skills
of a child are impaired. At times Prasanth may be expressing different
feelings in a way that we find inappropriate i.e. happiness by clapping,
stress by babbling or making particular sounds repeatedly. These are
his ways of expressing himself and we need to respect that. At times
these are also ways he has found to cope with a very confusing and socially
demanding world. When we want him to stop (or we want to 'correct him')
we actually want to take these coping strategies away from him.
A social skill that we take for granted is the ability to get another
persons attention. Children with autism do not know how to get attention.
They learn as they grow is that when they are sitting alone or quietly
or doing their own thing, people may pay little or no attention to them
but as soon as they do something like yell or jump or flap, they get
an interesting reaction like a shout or a or a loud 'No. The behaviour
is often discussed at great length and a whole lot of attention and
importance given to it. For most children such behaviours are learned
and reinforced by the reactions they get.
So if we want to eliminate these behaviours we want to catch the child
sitting quiet and praise him for that. Completely ignore him when he
is yelling. People in the environment need to be especially aware not
to discuss behaviours in the child's presence because this too is attention
Provide them with alternatives of behaviour. Most often we tell our
children "Don't yell" or "Stop shouting" or "No!
Don't talk loud". We tell them what not to do but not what to do.
So give them alternatives. "Hands down," "Sit smartly."
And whenever he is behaving as desired we want to praise positive .
" Kept quiet
smart boy!" or "Being gentle when you
You want to remember that results will not show in a day or even in
a week for some children. But remain persistent and consistent. The
environment in its reactions also needs to be very consistent.
Children with autism have very good rote memory. They learn songs, read
sentences or even a history or geography lesson by rote without quite
understanding the meaning. In junior classes rote memory works because
a child will be asked to write the answers to
2+3=___ or 4-2=___
As the child goes to senior class, this no longer works. He begins
to have difficulty, because his concepts were not clear to start with
and there is a lot more use of language such as problem sums that need
an application of language to figure out.
Help strengthen his number concepts by using real objects. Ask him to
pick 1, put 1 (in containers), give 1. Similarly teach other numbers.
Make teaching and learning as functional as possible. This means that
you will have make everything very practical and related to daily life.
"Give two biscuits to daddy" or "Bring five spoons from
Reading more about autism will also help you figure out new ways of
teaching. You could also give his teachers some reading material on
Being around other special needs children
As far as being in a special needs school is concerned, there is no
reason why it will be unhealthy for him. These other children have social
and communication skills that P does not have and therefore there is
a lot that he can learn from them. Children learn to be accepting or
intolerant about other differences in people by watching adult reactions
to them. So if you can be accepting and comfortable with those children,
P will be too.
Just a note about his eating independently in school
We want to give our children control but not so much that they control
our lives. For e.g. If you decide not to be present during his tiffin
time in school, he may or may not eat for a few days but he will surely
learnt to accept the fact that he has to eat on his own at school. If
need be talk to his teachers about not forcing him to eat and just let
him be. Let him decide whether he wants to eat or not and then respect
About the use of drugs
Most children with Autism have age-appropriate physical development.
They eat as much as other children and therefore have the same energy
levels. The difference is that other children go out and play physical
games, use their minds for academics and generally use up energy in
so many different activities. As for the child with autism, he does
not get these channels to release energy. That is why he may walk, jump,
run endlessly etc. These are his way of keeping himself occupied.
--Stopping the child usually does not work because he has to get rid
if the energy somehow.
--The "hyperactivity" is really the child's way of keeping
himself occupied. If we don't want him to run or move around in excess
then we have to keep him occupied in some other way.
--Cutting down on chocolates, colas, chips, and processed foods often
--Take him for long walks or a run in the park.
--We agree with you about the possible side effects of drugs. Most often
we give our children drugs without checking out the side effects completely
and more importantly without proper monitoring. In our work we do not
use drugs except for medical reasons such as epilepsy. We find that
drugs often sedate the child and reduce his ability to learn.
However, this is our view. There are different viewpoints on this.
And finally the decision to give or not give drugs has to be yours,
Letters to the Editor
This is with reference to the 'Helpline' letter in the December 98
issue of Autism Network regarding the sensory integration therapy
facilities in India.
I am happy to inform you that we at the Occupational Therapy
department of K.E.M. hospital, Mumbai run a sensory integration
therapy and research clinic. This clinic is three years old and I see
a lot of autistic children along with children having other
development disabilities. The services offered are free of charge for
the patients registered in our hospital, but prior appointment is
As you have rightly said, S.I.T. may not work in all the cases,
my personal experience for the last three and a half years in India
and the U.S.A. has been very encouraging. Also I have seen that this
therapy is more effective if it is administered with other therapies.
S.I.T. does not directly deal with communication and socialization
problems of autistic children but it helps in handling sensory issues
such as tactile defensiveness, sensory registration, gravitational
insecurity (fear of movement) and vocalization which hamper the
child's communication and socialization. There is a considerable
literature and research work showing effectiveness of S.I. in these
I thought this brief note might be useful for the parents of autistic
Occupational Therapy School and Center
Your newsletter is simply the " the best."
I attended your August workshop at Calcutta - Dolna School. I am the
lady with the two boys, both autistic: the elder one, ages 15, makes
deals with me. Those two days really was a turning point in my life.
I had been so depressed and completely lost. After those two days I
began to see some hope and realised things are not as bad as I thought.
In fact my dealings with my sons have improved a great deal since then
so THANK YOU.
And I am also part of Hope for Autism.
Ed. note: Hope for Autism is a Parents' Support Group active in
I read the December issue and as always I was struck by the reader friendly
style of providing information.
The editor however is so busy that she has started to forget some
tasks undertaken by her - I am referring to the Disabilities Act Amendment
Committee of which you were a member. This is especially surprising
because the exclusion of autism from the Persons with Disabilities Act
was a major reason for the initiation of the amendment process. I do
hope that in the forthcoming issues you will share with your readers
the various deliberations of the Committee in particular the wide ranging
efforts to construct a suitable legal definition of autism.
Dr Amita Dhanda
Parent Help Parent
I have been working with my daughter Soumya (three and a half years
old) for the past 10 months on a one to one basis for 8 hours a day,
approximately 50 hours per week. From a nonverbal, withdrawn child,
Soumya has changed into a child who is almost potty trained, has a lot
of receptive language, and can communicate her needs well.
I would like to meet mothers who, like me, are running a home program
on their own. Maybe we can help each other with new ideas and can give
therapy to each other's children. Of course, this will give us much
needed respite apart from being beneficial to our children. Those in
New Delhi interested may contact me at:
Do you think being a special needs teacher could be fun? Yes?
Train as autism teachers and resource persons at AFA.
We want energetic, enthusiastic persons to train in our hands-on approach.
Basic course duration: 9 months.
The one question every parent asks without fail is "What after
us?" Yet how many of us actually DO SOMETHING that will give us
answers for the future? How many of us actually stop to think of real
concrete things keeping the future in mind? Still, we will never stop
asking. "What will happen to my child after me".
There are no magical answers. What happens to my child in the future
depends largely on what I DO NOW IN THE PRESENT. If I work towards a
society that will welcome my child I will have to work on it from NOW.
THIS INSTANT. Not, "well he is in a school now so I don't have
to worry now I will think about it when he is 18'.
ACT NOW!!! If you want to take the initiative, if you want to be actively
involved, if you want to be in touch with like-minded families, write
to us at:
Action for Autism
T 370 F Chiragh Gaon, 3rd Floor
New Delhi 110017