And so to the final issue of the year.
A lot of the campaigning and lobbying work we do at
AFA can be a slow and drawn out process. But little by little we get
results and that is what counts!
As most of our readers know we function from inadequate
premises in Chirag Dilli village, that affects our efficiency and
possible reach to the many more families and professionals looking
for help and guidance.
The good news is that, finally, after years of struggle
and chasing applications, the Government has allotted us land to set
up a permanent purpose-built centre. Finally, an opportunity to set
up an institution with the physical capacity to meet our need for
expansion. A centre with a larger, national vision catering to the
ever-increasing needs of the large catchment of children, parents
and families that the AFA family has become the caregiver for.
This is what the AFA National Centre for Advocacy, Research
and Training sets out to do.
Before we celebrate one achievement the next battle
commences! We are now embarking on a massive fund-raising programme
to meet the costs of the building construction, equipment and maintenance.
The first stage of this fund-raising took place on 2
November at the Siri Fort Auditorium. Entitled 'Sur Mantra', the evening
comprised of a classical concert of Khayal and Thumri-Dadra featuring
Shubha Mudgal. We were delighted to have Mrs. Sonia Gandhi present
as Chief Guest. This was the largest event we have ever undertaken
and we extend our sincere thanks to all our supporters who helped
to make the evening such a great success. And a huge thank you and
congratulations to the 'Open Door' students who sang with such charm
and enthusiasm. I think we were all particularly moved by their rendition
of "We shall not be moved"! Ironically, we now wish for
exactly the opposite! Our wish it to have the new centre up and running
within a year and a half. We anticipate a huge amount of hard work
and perseverance along the way. We know you will all support us in
making this dream a reality.
Another area where AFA continues to campaign actively
is professional teacher training for Autism. With both awareness and
diagnosis of autism on the increase, the need for trained teachers
is increasingly urgent. AFA's year long training course for teachers
of children with autism has been up and running for several years.
This year's intake began in June and is now well under way.
As reported in our April edition, the Rehabilitation
Council of India (RCI) -sponsored National Workshop met in Chennai
last December to make a policy decision regarding the need for a separate
training course for autism. The conclusions from this workshop clearly
indicated the misconceptions and level of misunderstanding that prevails.
Our ongoing efforts to urge the RCI to either recognise the AFA course
along with that of the KPAMRC or introduce a dedicated, special education
course for children with autism seem to have had an effect. The RCI
have now called an Expert Committee meeting this December to develop
curriculum of a Diploma Course in Special Education (Autism). Little
The autism community has been fortunate this last year
in having the understanding and support of the Mrs Aloka Guha, Chairperson
of the National Trust, in getting things moving in what is really
a rights issue for the community.
This issue carries several accounts from parents that
illustrate the value of parent empowerment that is central to AFA's
vision. With specific and dedicated assistance from trained professionals
parents cannot only understand and deal with their child's behaviour,
but can also help them to improve and develop continuously, as well
as be an empowering example to other parents.
And so, we prepare to celebrate Autism Week across the
country and look forward to 2003 with optimism and excitement. And
we wish all our readers a New Year of Peace and Promise, Hope and
Teaching Thinking Skills through Play and
Drama to Children with Autism
(Continued from Autism Network, August
Dave Sherratt is a teacher from the UK and has specialised
in teaching children with autism to play. He has presented papers
on play and affective cognition.
o Play Structure 4 : Desire
These strategies are suitable for children that can understand that
people are capable of thinking thoughts independently (such as through
different perspectives). The teacher asks, "Who wants to play
with the wolf puppet and who wants the first little pig puppet ? What
did she want, can you remember?" During the story the teacher
asks the following questions. The fox puppet wants to sleep, but the
other animals want to take his food, will he have breakfast or an
empty tummy in the morning? The three little pigs want a safe house
but the wolf wants dinner. The wolf wants the pigs to come out, but
the pigs want to hide. Who had a fierce face was it the wolf or the
pigs? Can you show me a fierce face? Who had a frightened face was
it the wolf or the pigs? Can you show me a frightened face?
o Play Structure 5 : Belief
In this structure the children are developing an understanding that
other people have thoughts as well as desires. These explain some
of the wolf's behaviour. The first little pig believes that his house
is strong enough to protect him from the wolf. Was he correct ? What
about the second and third pigs ? The wolf believed that he would
catch the pigs when he dropped down the chimney was he correct ? Was
he happy or sad when he climbed down the chimney ? "He was happy
because he believed that he would ..."
o Play Structure 6 : False Belief
The final structure is designed for children that are able to understand
that people can be mistaken or tricked. The wolf finished huffing
and puffing and walked away from the house. Did he look happy or sad
? Was he really happy or sad ? He told the pigs he was going home
because he could not blow down their house. Did the pigs believe him
? Where was he going really ? Why did he trick the pigs ? The three
little pigs build a big fire, but what did the wolf think was down
the chimney ?
An alternative means to teach thinking skills through
play and drama in children with autism involves interactive mirroring.
Interactive mirroring uses non-verbally negotiated imitation and play
to create a sense of shared attention and a sense of having an effect
on one's shared environment (agency). This is a method of encouraging
a shared understanding of play with others and is especially useful
in children who find difficulty in "whistling to anyone else's
tune". Many children with autism find sharing a mental workspace
with others difficult and need the confidence that is provided by
this strategy in order to reach out to others.
Although this type of strategy is by necessity dynamic
and therefore difficult to describe prescriptively, it is possible
to outline the core procedures. There are three stages of interactive
mirroring. Step One aims to move from the child being imitated to
the child's imitation of the teacher and ultimately to an interactive
and dynamic mirrored pattern in a restricted and formal setting. Interactive
mirroring uses two identical sets of objects. One set is used by the
teacher and the other by the child. Each set might contain a range
of objects that include human or animal figures, some blocks and boxes.
The couple sit in a visually definable area, such as at a table or
on a carpet in a corner of the room. Both partners in this procedure
must be able to see each other's materials.
As the child touches or moves an object the teacher
imitates the child, each using their own set of objects. The child
lifts a block and the teacher copies the action, as if it were an
echo of the child's movement. Although even this low level of intrusion
can be uncomfortable for some children with autism, most children
will be attracted if not intrigued by the emerging mirrored pattern.
This mirroring is continued until the child is comfortable with it
and expects that their own behaviour will have a contingent response
from the teacher. At this point the teacher initiates a new and spontaneous
action with the materials. The teacher then looks expectantly and
explicitly at the child's materials, hoping that the child will reverse
the pattern and imitate the teacher's action. If this is successful
the teacher makes another spontaneous action with the objects and
again watches. If the attempt was unsuccessful the teacher reverts
to mirroring and waits for a further opportunity. This stage of interactive
mirroring attempts to build up conversations of actions in which the
teacher or the child respond to each other's movements. The teacher
may emphasise the significance of their own actions or those of the
child by making sounds of excitement or approval whilst using only
the minimum of recognisable words. The words used must not become
a distraction from the action but add to it. Step One ends when the
child starts to use spontaneous reciprocal interactions in other settings.
Step Two aims to move from the child generating play
ideas within an open setting to leading and then following the pretence
of others. This is similar to the previous step but recognises the
difficulties that many children with autism have in generating and
interacting about shared thoughts in an unstructured situation. This
step may be brought about by using children's toys in simple play
The child may be playing with a train set. The teacher
introduces an additional train to the track. Having been accepted
onto the same track, the teacher works to reflect the actions of the
child's train. The teacher then introduces a novel feature. Perhaps
the train falls off a bridge or a cow walks onto the line. The teacher
then works towards the child sharing a new focus within the play.
If the child is able to respond to this "sabotage of the familiar"
then the teacher can provide resources and other structures that encourage
the child to introduce variations into the shared play.
In the final step of interactive mirroring, the child's
imaginative play is taken into increasingly social peer-group settings.
The child is encouraged to begin building collaborative narratives
with other children around common interests in the play. A child may
find a shared interest in trains and work to share a play episode
in which two trains crash head-on. In this step it is often helpful
if the children involved have a wealth of pretend play experience.
Where this is not the case, the teacher can provide a background story
that acts to stimulate ideas, without encouraging simple replication
Using some of the strategies described above, it is
possible for children with autism to learn about the world in more
sophisticated ways and ultimately about the process of thinking itself.
These are important aims and some children will only make slow progress
towards them. However using a play and drama approach, some children
with autism may make rapid and substantial progress in an area of
functioning that at first seemed impossibly difficult.
Which thinking skills are most important for children
with autism to develop ? Children with autism have difficulties in
social understanding, in communication and in their rigid thought
processes. These produce a pattern of repetitive and narrow behaviours,
impairments in play and creativity and adaptability. Children with
autism also find difficulties in engaging with other people and particularly
with their peer group. The combination of these features of autism
also reduces the opportunities for children to extend their learning
through a shared focus, such as discussing ideas with friends. An
over-riding tendency to maintain the predictable and difficulties
in accommodating change also reduces opportunities for children with
autism to develop the flexible and fluid thought processes that normally
developing children build up through play.
In using play and drama to develop thinking skills in
children with autism, it is important for the teacher to focus upon
the most important areas of development. Using the techniques above,
the teacher should maintain a focus upon interactivity and collaboration
between child/adult and later the child with their peers. The teacher
should structure the play / drama to encourage creativity and imagination,
novelty and spontaneity. Finally, the child should be encouraged to
apply their creativity and imagination to the narrative. Without this
the child's thoughts are difficult to label and communicate and become
chaotic, fragmented and the potential for development is lost.
The teacher needs to recognise that the child who has
autism is an individual who does not share meanings effectively. These
techniques should be used to assist the child with autism to develop
their thinking skills and a more coherent understanding of their world.
o Sherratt, D. (1999) 'The importance of play.' Good Autism Practice
vol.1, 2, 23-31.
o Sherratt, D. and Peter, M. (2002) Developing Play and Drama in Children
with Autistic Spectrum Disorders. David Fulton Publishers. London.
Excerpt of a conversation between Z, aged
six, and his mother.
Ma: How will Ma know what Z wants to eat?
Z: I will write.
Ma: Can't you talk and say what you want to eat?
Z: No. I can't talk because I feel pain in my tongue.
Ma: Would you like to know how to talk?
Z: No. Because I don't like to talk.
Ma: Why don't you like to talk?
Z: Because I feel pain in my tongue.
How Do I Spell A.U.T.I.S.M. ?
By Chitra Raman
A is for Awe.
I am awestruck at what my child is able to DO, despite the limitations
placed upon her.
U is for Universe and Understanding and Unique.
My child inhabits a parallel universe that I must understand and help
others understand. In the process, I evolve as a human.
I learn the great lesson that differences in others must be appreciated
and that uniqueness can carry advantages as rewarding as similarity.
Fortified with that strong positive message from a parent, any child
will very likely make astonishing progress.
T is for Tolerance.
I must tolerate the insensitivity of others and learn to take it not
as a personal slight, but as an opportunity to educate.
I is for Incredible.
The incredible inner resources I never knew I had.
The incredible ability of a friend, or family member, even if there
be only ONE, to be supportive.
The incredible joy in my child's eyes when she achieves a breakthrough.
S is for Selective.
I must be selective about the episodes I focus and dwell upon, whether
they be the behavior of my child, a setback with the school system,
or differences with my life partner or a relative. I must ball up
like an armadillo and let those forces flow over me, to temporarily
crush but never to consume.
M is for Movement and Milestones.
I must keep moving.
Moving to find answers, moving to find ways around obstacles, moving
to harness the energy of well-wishers, moving to enrich the life experiences
of my child.
I can set a distant goal but I must not look beyond the next milestone.
I must never belittle any achievement, any change, any dawning awareness
in my child no matter how small.
Rather, I must celebrate each milestone by throwing
a wild party even if just for two - My child and I.
Medication and Alternative
Therapies for Autistic Children
By Chitra Iyer
The Forum For Autism, Mumbai organised a panel discussion
on Medication and Alternative Therapies for Autistic Children on Sunday
4th August. The panelists were Dr. Vrajesh Udani, Consultant in Neurology
and Epilepsy, Dr. Sanjeev Kothare Paediatric Neurologist and Epileptologist,
and Dr. Vibha Krishnamurthy, Pediatrician Specialist in Developmental
Disorders, all leading professionals who have been involved with autism
Dr. Udani started the discussion with a presentation
detailing the different therapies currently in use and their efficacy.
He prefaced it with some common questions and their answers.
Data from western countries suggest a 200-1000% increase
in the number of children with a diagnosis of autism over the last
15 years. Presently one child in 150 has an autism spectrum disorder
AND our experience is similar. The increase in prevalence is possibly
due to increased awareness and expanded diagnostic criteria, along
with environmental factors. The last is not yet proven.
The environmental factors being talked about are:
o Gut hypothesis: Infections, allergies, chemical deficiencies, "leaky"
gut, excess toxins - for which there is only some evidence
o Immune dysfunction: for which there is little evidence.
What underlies the symptoms?
o Unable to "read" others minds, expressions, body language.
o Cannot see the "complete picture", only details
o Poor attention, planning, sequencing, impulse control
o Cannot integrate touch, visual, sound sensations.
What are the primary concerns as voiced?
o Will he be normal?
o Will he go to normal school?
o Will he talk?
o How do we get the best out of him?
o How do we make him lead an independent life?
o Can you do something about his behaviour - hyperactive, aggressive,
obsessive, sensitivity to stimuli?
The answer to these questions supported with strong
o Intensive early interventions for toddlers
o Intensive Home / School based behaviour therapy
for all children
o Teaching skills including how to read other's faces, expressions,
Some drugs which are used today and which are supported
with evidence are mainly used for older children and adults, and helps
behaviour but not speech. Among these are Haloperidol (Serenace),
Risperidone, Methylphenidiate (Addwize, Ritalin), Fluoxamine, Fluoxetine
Various Therapies with Weak/ Conflicting Evidence are:
Sensory Integration, GFCF diet, Vitamin B6 (Pyridoxine)/ Magnesium,
Vitamin C, other vitamins. Drugs: Valproate, Carbamazepine, Olanzapine,
Buspirone, Melatonin, Steroids, IVIG, Antibiotics
Those therapies with no evidence or which are still
under study are: Vitamin A, Urecholine, Mercury detoxification, Antifungals,
Omega oils, Reiki massage, Acupressure, Homeopathy.
There is now evidence that Auditory Integration Therapy
and Secretin do not work.
No matter which drug is used, what is most important
is how the drug is used.
o Use with therapy; never alone
o Use in older individuals
o Use only if there are behaviours that interefere with daily life
o Be conscious of the particular symptom being addressed - hyperactivity,
obsessions, aggression, sleep problems
o Avoid drugs with long term side effects.
Benefits should not be over- or under-estimated.
All autism is not the same. When many therapies are used simultaneously,
we do not have blood tests to follow up, checklists are confusing
and culture based, there are several opinions, and parents get confused
and follow irregular treatments.
What should the parent do?
o Get a full evaluation done - In Mumbai: Hinduja Hospital, Jaslok
Hospital, Ummeed Child Development Centre. In Delhi: Action For Autism,
AIIMS. In Bangalore: NIMHANS and in Chandigarh: PGI.
o Get information - from the internet, libraries, support groups
o Get early intervention, proper education placement (Strong evidence
to support benefits)
o Use alternative therapies that have the least side effects, and
with more published papers on evidence based on research
o Use drugs only when required
Dr. Sanjeev V. Kothare, Pediatric Neurologist &
Epileptologist next covered Pharmocotherapy for Children With Autism.
He made a detailed presentation on which drugs are to be used for
Dr. Kothare made it very clear that these drugs should
be taken only when prescribed by a physician who diagnoses autism.
The drugs need to be started and increased slowly to their full dosage
and similarly need to be tapered off and not stopped suddenly. Every
drug has side effects. Only on weighing the pros and cons of whether
the child's conditions is such that his behaviour is interfering with
his day to day activities are drugs prescribed to overcome such behaviours
and help him lead a close to normal life. Normally the body gets adjusted
to the side effects of the drugs and helps in controlling untoward
behaviours. Usually one should try to avoid drugs with long term side
Dr. Kothare still strongly advises that none of these
drugs will help alone. Therapy is what is most important, which along
with drugs can help the child overcome various problems such as hyperactivity,
obsessions, aggression, and sleep problems that the child is facing.
For Autism with ADHD the drugs that are presently being
prescribed by neurologists are: Methyl Phenydate, Dextro-amphetamine,
Clonidine, Guanfacine, Buspirone
For Autism with Aggressive Behaviour drugs need to be
given depending on case to case diagnosis. These are: Propranolol,
Risperidine, Valproic acid, Carbamazepine, Naltrexone.
For Autism with Epilepsy the following drugs work well
depending on the individual nature of the case: Valproic Acid, Clobazam,
For Autism with Insomnia if and when doctors feel the
plight of the parents is desperate they prescribe the following drugs
which have shown good results: Amitriptiline, Trazadone, Melatonin.
Next Dr. Vibha Krishnamurthy, Paediatrician Specialist
in Developmental Disorders stressed the importance of early diagnosis,
early intervention and the effectiveness of therapy. She emphasised
that when trying out new alternative therapies one should not stop
regular therapy. They could possibly be tried out alongside but not
at the cost of regular intervention therapy. She also said that Lovas
or ABA, which is being looked at very eagerly today, uses techniques
of encouraging positive behaviour and discouraging negative behaviour
which are part and parcel of all therapies.
She also asked parents to be part of parent support
groups to share their problems and collectively organise such workshops
and most importantly to be well informed. Some regular schools have
been very forthcoming and have solved issues with parents on integrating
high functioning autistic children and some school counsellors too
were working very well with children and parents. She emphasized the
need in special schools of all involved therapists to work in co-operation
with each other to draw up Individualised Education Programmes (IEP)
for children and work with parents to achieve goals together.
Following the presentations the panelists took questions
from the attendees.
Parent Accounts: Fear of Flying I
We have two sons. Aman the elder one is eight years
old and Sahil who is six years. Aman was diagnosed with Autism four
years back. Keeping in mind his complex behaviours we had every year
been postponing our holidays. But this year we thought of going ahead
and taking up the challenge. We were of course very much apprehensive
that his behaviour would be difficult both during the flight, as well
as at the airport when we landed, and he might also find the hotel
and sight seeing difficult to deal with. Some of our fears about the
flight were that he may not sit, may start crying, and disturb others
if he didn't sleep through the duration of the flight.
I asked AFA's advice on how I would cope with his behaviour
during the flight. As always, I was advised to relax and not to pass
the effect of my uneasiness on to my son. I even asked her if any
tranquilizer should be given. Merry said that if the tranquilizer
did not work, as it often does not with many children with autism,
Aman may then have to battle with his drowsiness as well.
Aman was told about the trip and prepared in advance
for it in a manner that he understood. Aman's teacher Viveka also
explained to Aman in a similar manner that he was smart enough to
sit in the aircraft through the duration of the flight. So, we landed
at the airport on the night we had to leave. Our very first apprehension
about his behaviour in the flight proved wrong as for quite some time
he was asleep and the rest of the time he enjoyed the flight!
Aman enjoyed the take off. He didn't move from his seat.
He took the orange juice from the air hostess nicely. He was exploring
new things. He would gaze at the written instruction 'fasten seat
belt while seated'. It was lovely to see him so calm and peaceful.
We ultimately landed at the Kuala Lumpur airport. He was a bit agitated
as his sleep was disturbed. It was explained to him that we had reached
our destination and soon he would reach the hotel to relax. To me
it seemed that he had understood my point and was ready to accompany
us to the hotel.
We stayed here for two nights and his behaviour was
acceptable. He enjoyed the city tours, long walks, eating his favourite
French fries at McDonalds. I made him sit in the roller coaster also.
He did not like it because of the speed but he did not cry. He enjoyed
the comfortable rides of the slow giant wheel and merry go round.
Water is fun for Aman and we landed on the Langkawi Island and being
on the beaches must have been his dream come true. He was so satisfied
and enjoyed it lots. He was disturbed sometimes because of the heat.
But on return to the hotel he relaxed.
After this our second stop was Singapore which was an
hours flight away. In Singapore he walked and walked, got tired, and
went off to sleep on his own. I just had to take care of his hunger
and he fully cooperated. We visited the zoo. He would sit (!) and
watch the half-hour animal shows like the elephant show, sea lion
show, polar bear show. He loved to watch the fountain musical show
at the Sentosa. He watched with his eyes opened wide and big and then
clapped. Once he was disturbed when we had to sit in the cable car.
He pulled my hair. Our tour guide took his hand and explained to him
not to be afraid of the height and relax. He understood what was explained
to him. It made him relax and we also felt comfortable then. He held
the guide's hand while watching several other spots. He was interested
in everything there.
Of course before going on the trip everything about
it had been explained to Aman. He knew for how long he was going and
where. Towards the end of the trip he was again told about the flight
back to Delhi. He was pretty relaxed and enjoyed his flight throughout,
getting up only to go to the toilet.
In our opinion: -
1. Children should be taken out to see the outside world to think,
to imagine and to understand things other than routine.
2. We felt the climate played an important role. He is mostly relaxed
when it is not hot. So maybe the moderate climate helps.
3. On a trip food should be provided on time, not giving a chance
for a tantrum.
4. Things should be explained beforehand. Preparing the child helps
The holiday was an experience in itself for us, and also him, and
we will try it again.
Maybe, receiving the full time attention of both mother
and father for twenty-four hours a day, something that does not happen
on a regular day, also helped. On a holiday, parents are relaxed and
this effect gets conveyed to the child.
and Other Issues
My son Rishabh who is 7 years old now was diagnosed
as moderately Autistic at the age of three. Since then we are in constant
touch with Action For Autism for imparting training and valuable information
regarding Autism, which made our son more socialized and independent.
There is lot of improvement in understanding and communication. Earlier
he was not speaking at all. Now he is communicating his needs. Eye
contact and interaction has also improved.
Here I want to share one or two instances, which may
be beneficial to others also. My son Rishabh never wanted to get his
hair cut. He used to scream loudly. It was a horrifying experience
for both of us. He was scared of scissors. I didn't know how to overcome
I tried many different ways e.g. called barber at home,
put on music, kept the TV on (as he is fond of music) but in vain.
Then last year I attended a workshop in Delhi, where we were taught
how to overcome such a problem. I made a calendar and followed their
instructions on preparing him for a hair cut. I prepared him one week
in advance. I prepared and read to him a story that on such and such
a date we will go to barber's shop. He will put clothes around your
shoulder; will sprinkle water on your hair. He will cut short your
hair and make you smart. I showed him the scissors, and also gave
him scissors to handle. In the beginning, I also rewarded him with
chocolates on two, three occasions for sitting comfortably for the
To my surprise now Rishabh has changed. No more fuss.
Now he is sitting comfortably for a haircut even when the barber cuts
his hair and makes a sound with the scissors. Thanks to AFA, simply
explaining to him appropriately and in advance and narrating the story
of the haircut solved a complicated problem.
In the workshop we were also taught how to teach a child
to wash his bottom after passing stool. I followed the instructions
and taught Rishabh about the up-down movements of the hand. He followed
it and was able to clean his bottom independently within a week.
Now he is able to wash his hands with soap independently.
Thanks to AFA for all these things. I share with you all, so that
it might help other mothers also. By explaining or narrating a story
in advance to the autistic child it helps a lot.
Autism Week: December 2002
o 'Prerna' organized by Asha For Autism.
o Video films on Vitamin B6/ magnesium therapy,
o Rapid Prompt Technique developed by Soma Mukhopadhyay (Tito's mother)
For details contact Veronica Mathias firstname.lastname@example.org
o 15 December: Release of Newsletter
'Autism Times' by Movement for Autism
o'To live with An Autistic child '
Workshop for parents by MFA
17, 18, 19 December, 2002
For details call:
Tel: 080-8391050 or email@example.com
o 14 December: Workshop I: Using Sensory
Integration in Everyday Routines - By Dr Anjali Joshi
o Workshop II: Guardianship and Social Security
with Special Focus on Financial Provisions
o 21 December: Sports Day and Party
for children, parents, and professionals
o 22 December: Walk for Autism 10:00 am India Gate
I was diagnosed Asperger in September 1992 aged 47.
I had recently taken a post dealing with asylum applications in the
Home Office and was not doing too well This body still employs me
at the other end of the asylum chain i.e. appeals against refusal
Like, perhaps, a few of my colleagues in Aspergerdom,
I knew nothing about the condition at the time. I soon learnt as I
joined a Social Skills Group at the Maudsley Hospital London where
I had been diagnosed. This group is administered by Professor Patricia
Howlin and Ms Pamela Yates.
Purpose of Social Skills Group
The clear purpose of any such body is to develop self-help methods
of dealing with our communication difficulties . In this context we
share personal news at each of our meetings telling what has happened
to us since the last one. This usually occupies an hour at the beginning
of the meeting. In this section is revealed the talent of our members
as well as their problems and difficulties. It displays the wide range
of interests and variety of IQ levels of the group. Many of us are
seeking to improve our education in all senses of the term, academic,
vocational and practical. e.g I have just completed the first year
of an Open University Spanish course as well as obtaining a diploma
in French from the same body. I have also failed in an Immigration
The second half of this article is a discussion of specific
problems which may inhibit social intercourse with the allegedly normal
Social activities have been organised by and for the
Group. These include visits to places of interest and meals together.
Certain members have gone to flower shows and on riverboat cruises
Through our group Asperger and Autism have been brought
to the notice of Parliament. The mother of a past member of our group
is an M P and minister in the last Conservative government who has
attended our meetings arranged for us to share tea with her in the
House of Commons and introduced Autism into debates on disability.
We have also hosted conferences in an effort to educate
Asperger people and the professionals working with them.
In 1994 ,a novel idea in inter-Asperger communication
was conceived. From this was born: 'Asperger United'. This name was
coined by a member of our group. It is an in-house magazine produced
by the National Autistic Society, containing letters, stories, biodatas,
and poetry - all provided by persons with Aspergers. The editor, currently
yours truly, vets the articles sent to the NAS before they are published
in the magazine.
During the summer an anthology of Asperger writing and
artistic talent was published .We hope that this will also reappear
and even move out of the Asperger clan into general circulation.
Finally, if this should be included, I was a candidate
for election to our local council in May this year and received 305
votes without having canvassed my ward, I was therefore unsuccessful.
Blessed Christmas and Happy New Year to you all.
'Thinking in Pictures, and other Reports from My Life
Published by Vintage Books, New York
I watched the movie 'Iris' today. Without words, how
would I think
is what Iris Murdoch (Kate Winslet) says, on the
importance words have for her. And, as brilliant as the movie was,
for a while all I could think about, was Temple Grandin, who thought
only in pictures.
'Thinking in Pictures, and other reports from my life
with autism' was the third account of Grandin's life that I read,
and no, it wasn't tiresome. In fact, I enjoyed it immensely. There
is great pleasure in reading a book which discusses, and discusses
well, a subject one is interested in.
There is something in it for everyone
lover, the medical practitioner, the scientist, the Occupational Therapist,
the cattle farmer, the families of autistic individuals, the Sociologist,
and even the spiritually inclined, to name a few. Of course, a book
with a foreword by Oliver Sacks will have already done half the job
of getting me hooked!
This book informs theoretically about autism, at the
same time giving an insight into Temple Grandin's personal battles
and victories over autism. And victories they most certainly are.
The ten years between the writing of her first book 'Emergence Labeled
Autism' and 'Thinking in Pictures', clearly shows how much more she
understands herself. More importantly, how much more others understand
her and the condition of being autistic. She is now a leading figure
in the areas of livestock behaviour, livestock equipment designing
I feel that she has found a wonderful balance in her
struggle between her autistic self and her strivings to be her 'normal'
self, without devaluing either. She shows that she has understood
what autistic traits could be made more 'sociable', and is constantly
working towards that. Thus, she says at the end of the second chapter,
that her autism is a part of who she is. She would not like to give
up her ability as a visual thinker, which allows her to use her mind
like a sophisticated "computer graphics program", and helps
her in her work. At the same time she urges employers of autistic
individuals to be aware of their limitations in social settings in
the chapter entitled 'The Ways of the World'. She has managed to improve
the way in which she uses and adds to the library of visual images
in her head, which she has to scan through when she retrieves information,
but she admits that this often takes time.
'Thinking in Pictures', unlike her first book, isn't
just an account on what she had to (and still has to in some ways)
deal with and how she did it. It discusses thought, sensory issues,
emotion, medication, socialization, and religion from her experiences,
with examples from experiences of other autistic individuals. Throughout
the book there is the 'I', but there is also the 'Many autistic children'
and 'Tom's overall sensory processing problems'
or the 'We',
and she manages to include the entire autistic spectrum in her writing.
Other chapters deal with diagnosis and the different
diagnostic categories in the autistic spectrum, the role and scope
of emotions in animals and humans, animal behaviour and autistic behaviour,
genius and autism, and one of my favourite chapters 'Stairway to Heaven:
Religion and Belief'.
Most of us enjoyed writing compositions titled 'The
autobiography of a tree' or 'The day I turned into a coin' when we
were in school. Apart from a better understanding, maybe through biographies,
movies about pigs that can talk, or documentaries on the Lives of
Otters, we are all fulfilling an urge to identify more closely to
the people, creatures and things around us. Grandin seems to have
connected herself to so many roles and creatures in the world. She
has found links between her life and the geniuses in history, characters
in television serials, the grains of sand that she sifted through
her fingers, and the cattle she has worked with.
Throughout the book it is as though she takes on a range
of roles at various times, giving the reader a large amount of information
in a way that is not at all overwhelming. There are some valuable
lessons we can all learn from reading this book.
o Shaneel Mukerji has worked for a year at a Camphill
Community Centre for adults in the UK.
She is currently undergoing the one year training course at Action
Q. My daughter Sharon,
is three years and six months old, but has still not started communicating
verbally. Non-verbal communication is also limited. A year ago, when
we visited the Child Care Centre, Cochin, they felt that she has Attention
Deficit Hyperactivity Syndrome. But since she shows autistic characteristics,
I feel that she has Autistic Spectrum Disorder/ PDD at a moderate
level. I would like to get a complete diagnosis and to start treatment
and early intervention for her. In this regard, can you please let
me know the facilities available at Bangalore or anywhere in South
India for complete diagnosis and treatment/ early intervention, the
special schools, etc.
I would also like to know the sources of websites for
information regarding GFCF foods in the Indian context. I have already
seen many websites regarding GFCF in a western context.
A. You are quite right in wanting a
diagnosis as early as possible as early appropriate intervention is
always helpful. Since you indicate that Bangalore is a city it is
possible for you to visit, the best place for a diagnosis would be
NIMHANS. At NIMHANS families are also provided with a comprehensive
program for early intervention.
For information on GFCF diet there are many sites but
as you have noted they are written by westerners. We do not have information
on any Indian GFCF site. If any of our readers have information on
such a site perhaps they could share the information. The December
2002 issue of Autism Network (Vol VII No3) carried an article on GFCF
diets for children with autism which you might find useful.
Q.I am the parent of an
autistic boy diagnosed as high functional. He is now 13 years old.
He is attending a normal school apart from getting training in National
Institute of Mental Health Secunderabad. Now he is able to understand
the basics in science, maths, and social studies. His writing is very
poor. In spite of being given regular writing practice, his writing
has not improved. I request you to give suggestions to improve his
writing. He is verbally good. He is on GFCF diet.
A. It is good to learn that you have, with support from
NIMH, succeeded in helping your son continue in a mainstream school.
It is so important that we be able to include our children, yet it
is so often hard to find schools that are willing to do so except
with the very able ones.
Regarding his writing, this is one area that many high
functioning ASD children have difficulty with, along with areas like
joint attention, gross motor movements, and social interaction. You
could try some of the following exercises: writing with a paintbrush
on a paper stuck to a wall, writing with a stick on sand, and of course
practice with handwriting exercise books.
If his writing is nearly illegible, and there is not
much improvement, then perhaps you can persuade his school and if
they are willing, to allow him to use a computer. Sometimes schools
are unwilling to permit children with autism to use computers. If
that is the case you will want to advocate for him. When schools can
incorporate ramps and other assistive devices for children with CP,
Braille for the visually impaired, why not computers for children
Explain to his school that the computer for him is an
assistive device, and as necessary as a ramp for a child with CP.
Q. Though my son's handwriting is poor,
when he is in a good mood he is able to write up to one or two pages
himself. That is not permanent because he is often not in the mood.
Shall I introduce a computer or typewriter instead of writing? Or
shall I make him write in notebooks when he is in the mood to write?
His school is willing to introduce a typewriter.
My son, (though otherwise able) is not able to tie his
shoe-lace and does not show interest in doing it also. Can you give
me some exercise to improve his fine motor co-ordination?
A. It is good to know that your son
can write up to two pages on his own. As you might be aware, many
children with autism have difficulty in holding a pencil with a firm
grasp and therefore their handwriting may not be too good.
It is great that his school has agreed to allow him
to use a typewriter. But you also need to continue encouraging him
to write by hand also. Whenever he has written work that is not too
lengthy encourage him to use his hands and reinforce the effort. Some
exercises you can do with him:
o Use his fingers in a variety of activities like finger painting,
assembling nuts and bolts, zipping-unzipping bags, dialing the telephone.
o Hold his wrist very tight so as to exert pressure on his fingertips.
Do this a few times in the day.
o Play with kneaded wheat flour or play dough.
o For teaching him to tie his shoe lace try backward chaining. That
is you make the loops and let your son do the last step, namely just
pull the lace to tighten the final knot Gradually increase his role
in the activity.
Letters to the Editor
Shortly after my son was diagnosed with autism, I
had an urgency to get treatment for the child as soon as possible.
When I became a member of Action for Autism, I went through books
regarding treatment and prognosis, which includes behaviour therapy,
sensory integration therapy, Vitamins, Diet, Dance therapy and Dolphin
therapy. I am following some of them, but dance therapy, Dolphin therapy,
etc. is new to me. When I heard of the opportunity to learn about
dance therapy, I was keen to join. But I was totally confused what
it was all about.
But after attending the dance session with Tripura
Kashyap I realize that dance can do much more for my son, especially
finger pencil, mirroring partner and hand gestures are quite interesting.
As my son is fond of dancing, I feel that dance therapy can improve
his body language, eye contact and boost his confidence.
And I personally find that it can act as relaxation
therapy and is very helpful for mothers who are always under constant
pressure and tension
Dr Mala Walia
Thank you for publishing my letter. I hope it will be useful for
other parents also. Mentioned below are some of the minor (of course
major for us) improvements in my son Abhishek, following application
of a visual and structured environment.
Earlier when we used to take him out for a walk inside
our complex for three rounds, he used to throw tantrums as he would
not understand the meaning of three rounds. Immediately after one
round, he used to start crying. But now we have overcome that, by
showing him a card with 1, 2 , 3 written on it. After one round, we
strike out 1 and tell him 'one round finished. Now there are two more
rounds', and so on. We are just amazed to notice that he understands
this very well and so we are able to take him for a three rounds without
Nowadays, we have started to tell him his programme
before hand, especially when we are going out. By doing this we are
enjoying our outing and recently for the first time, we could even
watch and enjoy a full Tamil film, where our son sat between us for
three hours. Not only was he just sitting, but also was jumping up
when a favourite song of his came on the screen.
We have purchased a study unit for him. So we switch
on the study unit light for better focus and switch off the normal
light while teaching, by doing this his concentration has improved.
Nowadays we show him beforehand the items he will
have to do or study. We have also introduced a finished tray. This
has fetched good results to my son. Also we are teaching him the concept
of numbers. Hence your training in Chennai has been very fruitful
to us. In addition his special educator is also applying all these
methods at the school.
I am a special educator working in a regular school. I am at present
working with three autistic children and trying to integrate them
in our Montessori setup. I had the privilege of attending your workshop
which has helped me tremendously. I have implemented many of your
suggestions which has given such a positive outcome. Thank you very
much for giving us such wonderful and useful techniques.
It was a great pleasure sitting through your informative workshop.
I am with Apoorva Training Centre for Autism, JP Nagar, Bangalore
and also the Asst. Co-ordinator for the Autism Course conducted by
KPAMRC. I am also happy to note that an Indian is an active member
of the World Autism Organisation.
I have a child five and a half years old who has been diagnosed
mild autistic. The articles published in your magazine are very encouraging
and heartening to a reader like me.
K Kemkar, Sqn Ldr
Congratualtions and a BIG thank you to Abhinav Gupta and his parents
for making a very special donation to AFA.
Abhinav's parents asked family, friends and relatives
to contribute towards the fund for the building of the National Centre
instead of bringing gifts to the party.
Happy Birthday Abhinav!
Forum for Autism
Using Verbal Behaviour Analysis to Work Effectively with Autistic
December 14 - 15, 2002 o Time: 8.00 am - 4.00 pm
NEHRU SCIENCE CENTRE, DR. E. MOSES ROAD, WORLI, MUMBAI
(Between Mahalaxmi Station and Worli Naka)
The Workshop will cover:
o Form vs Function; why many programmes fail.
o Using the research to improve treatment.
o How to improve the chances of your non-verbal child speaking.
o Positive vs negative reinforcement; which method is more desirable?
o Four rules for effective reinforcement.
o Differential reinforcement and its uses.
o Extinction vs Punishment.
o The Shaping procedure.
o Using backward chaining in teaching socialisation skills.
o Towards good conversational skills (and why traditional methods
may not work)
o Effective data collection.
o Escape-motivated behaviour and how to reduce it.
o Generalisation: How and why?
o The Verbal Operants, and Verbal Behaviour work.
Video presentations will be used throughout. The primary
goal of this workshop is to help you develop skills that will help
you teach your child effectively.
Duncan Fennemore is BCABA Director, Centre for Educational
Intervention in Early Childhood, London. He has trained in the Young
Autism Project at the University of California in Los Angeles, has
worked as a senior therapist and a programme supervisor in Canada
and the U.S. He has done post-graduate work in Counselling Psychology
in London and in Educational Psychology through the University of
British Columbia. He is also a certified Behaviour Analyst.
Fennemore consults on thirty-five programmes in the
U.K., Europe and the Middle East, and collaborates on seven others
in conjunction with Dr. Vince Carbone and Dr. Patrick McGreevy. He
is also Training Director of T.R.A.P. (Training Resources for Autism
This is an excellent opportunity for parents and professionals
to learn and equip themselves to teach children with autism.
o Fees for the workshop cover both days and include
lunch, tea, and material.
o For a parent and members of the Forum For Autism Trust: Rs. 1500/-
o For professionals and non members: Rs. 2500/-
For more details write to: firstname.lastname@example.org
Autism Workshop in Kolkata
5 - 8 December, 2002
SURJO SEN MANCHA, JODHPUR PARK, KOLKATA
For information and details please contact:
Autism Society, West Bengal
o Mrs. Tapati Ghosh: 472-0422 ,
o Mrs. Chandra Bose: 417-0860
o Indrani Basu: email@example.com
AUTISM WEEK WORKSHOPS: DELHI
INDIA INTERNATIONAL CENTRE ANNEXE, LODI ROAD
Saturday December 14, 2002
Using Sensory Integration in Everyday Routines
A Workshop by Dr Anjali Joshi
Morning: 9:00am - 1:00pm
Dr Joshi is an Associate professor at the Occupational
Therapy School and Center, K.E.M. Hospital, Mumbai since the last
20 years. She helped set up the Sensory Integration clinic in K.E.M.
Hospital in 1995.
Dr Joshi is a certified Sensory Integration (S.I.) trained
Occupational Therapist from the University of Southern California
along with a Masters in Occupational Therapy (O.T.). She has conducted
workshops for therapists and parents in different parts of the country
and yearly workshops in Mumbai.
In addition Dr Joshi regularly lectures on Sensory Integration
at different schools and training centers. Dr Joshi has published
papers on S.I. in Indian and British journals of O.T.
The workshop in Delhi is planned to be an Introduction
to S.I. where she will cover the sensory systems, the dysfuctions
of the systems, how to identify the problems in children and incorporate
sensory activities in every day routines of the child.
This workshop will be accompanied by video clippings
of therapy and a question answer session.
Ensure our Children's Future
Guardianship and Social Security with Special Focus
on Financial Provisions
Afternoon: 2:00 pm - 5:00pm
The session aims to tackle the subject of future planning
for our children's financial well being and the need for initiating
o Rs 400/- for each participant
o Rs 200/- for Annual and Life Members of AFA
For more information contact:
Action For Autism
T370F Chiragh Dilli, Third Floor, New Delhi 110017 Tel: 6416469/70
Those who attend both workshops will receive lunch
AFA Tee Shirts for Sale!!
Cool, cool tee shirts great for summer wear!
With the Action For Autism logo and a slogan printed in black on a
o Priced at Rs150/- per piece o Free size
Support the Autism Movement in India!
Contact the AFA Centre for orders: Tel:6416469, 6416470