
N E T W O R K
December 2001 Vol. VIII, No. 3
Page One
This year completes ten years of Action For Autism's existence. Ten
eventful years which we can look back on in the knowledge that we
have gone way beyond the limited resources at our disposal.
Fifteen years ago special needs schools had just about begun to be
aware of autism. Most had heard of autism, had seen a few children,
but viewed the condition as one of these uncommon disorders that are
too rare to merit much specialised attention. Many admitted a few
children and given the limited information available did the best
they could to help them. However there was little awareness of the
very specialised nature of therapy required. As a result schools in
different parts of the country started special sections for children
with autism, but in name alone. There were no teachers with the training
or the understanding of the different ways that autism affects and
individual, or the knowledge to help the child.
The majority of children with a diagnosis of autism received no or
inappropriate help and often developed more intense and complex behaviours.
Many families felt helpless and had to resort to measures that seemed
inhuman to the outsider but were often the only resort left to the
families.
Many years down the line there has been a distinct change in perceptions.
Even schools in small towns and remote areas now have the awareness
that specialised methods are required for children with autism. The
demand for specially trained teachers has steadily increased.
Mainstream schools too are now more willing to accept a child with
autism. Perhaps a select few and perhaps only such children who do
not have very unusual behaviours, but it is a start. A welcome departure
from the earlier belief that kids with autism were 'hopeless' cases
best institutionalised.
It has now well established that if a child receives appropriate
intervention very early in life, many of the symptoms of autism can
be markedly reduced. Perhaps one of Action for Autism's most satisfying
achievements has been its contribution towards bringing down the mean
age of diagnosis. A study done in the early nineties by a researcher
working with AFA found the average age of diagnosis to be six years.
Following on the above study Action For Autism carried out a project
with support from the Rajiv Gandhi Foundation with paediatricians
across the county. We were asked at the time why we did the project
with paediatricians and not with psychiatrists, who it was felt were
more equipped to diagnose autism. Our reasoning was that paediatricians
were the first and often the only physicians who saw a small child,
and therefore best placed to spot early signs of the possibility of
a child later receiving a diagnosis of autism. A psychiatrist would
rarely, if ever, see a child. India is not a country where families
consult a psychiatrist when their child shows a developmental disorder,
or even otherwise. Therefore for the project to have the most impact
it was important to target physicians who would have the most interaction
with children. The project included dissemination of information on
diagnosis, mainly the CHAT and the DSM IV. Though no study has been
done, from our own experience as well as discussions with physicians
in both government hospitals as well as in private practice, the mean
age has clearly fallen (and is now perhaps between two and three years).
The other question we often have to answer is 'Why diagnose if you
cannot provide services?' This is a bit like the chicken and egg situation.
When there are fewer children visible with a diagnosis of autism authorities
feel little need to bother about creating services. So as long as
children rarely received a correct diagnosis autism had no voice.
With the surge in diagnosis authorities feel the pressure to at least
acknowledge a need even if the demand for services is not met. With
a need being acknowledged the effort to set up services will follow.
With single-minded efforts AFA has established with finality - amongst
parents, special educators, schools both special needs and mainstream
- the specialised requirements of children with pervasive development
disorders and ADHD. We have even succeeded in convincing the Government
into making a start in acknowledging this. In addition AFA has pioneered
teaching methods that are suited to the differing situations and needs
in our country. AFA has disseminated this information through this
widely circulated and read journal Autism Network that has been published
without a break for the last eight years. AFA runs short courses -
continuing education programs and three-month courses - for parents
and professionals as well as a year-long teacher training course.
However though AFA receives at least one request a week for specially
trained teachers lack of space limits the number of teachers it can
train to fulfil the demand. AFA played a pioneering role in pushing
for inclusion of autism in our disability law, which resulted in the
National Trust Bill finally being passed as the National Trust Act
for Autism, Cerebral Palsy, Mental Retardation, and Multiple Disabilities.
The Ministry also appointed a committee - in which AFA was privileged
to be a member - to look into and suggest amendments to the Persons
with Disabilities Equal Opportunities, Full Participation, and Protection
of Rights Act and suggest amendments. These amendments covered the
inclusion of autism in the Act.
In addition to all of the above AFA is publishing manuals and material
in regional languages to disseminate information on autism.
AFA runs these various projects functioning from cramped rented,
dust-prone premises that affect our equipment, limit the services
we are able to provide and seriously compromise our functioning and
our activities despite the enormous demand. For all that AFA has accomplished
there is still miles left to go. There is still a great deal more
that needs to be done.
Despite the severe constraints under which AFA is forced to function
its contribution in the field of disability and the impact it has
on the lives of thousands of families is evidenced in the empowered
families who form AFA.
As Dr Nandita de Souza of Sangath once commented "AFA has changed
the face of autism in the country".
We are happy to have done that, for our children, and for all those
families whose lives are forever affected by this complex condition.
What You Need to Know About Megavitamin
Therapy
Guy Young
In response to a growing awareness in India, of the potential benefits
of the use of Vitamin B6 and other nutrients, to autistic children,
a summary of available information is presented here.
Megavitamin therapy, which refers to the use of high dosages of Vitamin
B6 in combination with Magnesium, is recognized as a possible treatment
for the symptoms of Autism. Although this therapy makes no claims
to cure the condition, it is billed as 'the most strongly supported
biological treatment' for the condition, with a well-documented history
of effecting positive changes in the condition of 45-50% of autistic
individuals who undergo the therapy. Beneficial effects were apparent
in 18 consecutive scientific studies (most of them 'double blind',
placebo-controlled 'crossover' studies) carried out between 1965 and
1996 in the U.S, France, Venezuela and Italy.
THE treatment is of special interest since it is believed to present
a much safer alternative to drugs on offer, with more consistent results.
Drugs only mask or suppress some of the most visible symptoms of autism
- and frequently cause their own problems. These nutrients, when administered
in large but carefully controlled dosages, may safely bring about
a marked improvement in areas such as speech and vocabulary acquisition,
as well as a marked decline
in some challenging behaviours associated with the condition. Vitamin
B6, Magnesium and DMG are also considered relatively inexpensive.
However, that, while true for the USA and other developed countries,
does not hold true for India.
What nutrients are used in 'megavitamin therapy' for persons with
autism?
The principal nutrient in the therapy is Vitamin B6. It is widely
available without prescription and is good for the general health.
It can safely be given in large doses. However, at such levels it
can induce a deficiency of other minerals present in the body. For
this reason large doses are always administered in combination with
Magnesium.
Magnesium (likewise widely available) is another nutrient - a naturally
occurring mineral also good for the general health. It has been reported
by researchers in a different field that it may lessen hyperactivity.
A third nutrient called DMG (Dimethylglycine) is sometimes given,
though not necessarily in conjunction with Vitamin B6 and Magnesium.
It can have positive effects on an autistic person's condition. It
is also thought, though not as yet proved, to enhance the effects
of B6. Despite its complex sounding name, it is technically a food
(found in liver and brown rice). It can be obtained from health food
shops. Chemically it resembles a vitamin, but it is not classified
as such. This is because there are no symptoms associated with having
a lack of it in one's body.
It is worth noting that Vitamin B6, Magnesium and DMG are not drugs,
but minerals. Drugs can be harmful, as they act by interfering with
natural bodily processes. In direct contrast, the action of vitamins
and minerals on the body presents few problems - they enable and enhance
bodily processes.
Autism has been called a 'B6 dependency syndrome'. But not everybody
will respond to the therapy. Whether an autistic person responds to
'megavitamin therapy' depends on that person's biological make-up.
The leading figure in B6 research, Dr. Bernard Rimland - who is the
director of The Autism Research Institute - has stated that an autistic
person "will improve on high doses of B6 only if that person's
body requires extra B6".
What are the beneficial effects of 'megavitamin therapy'?
Researchers and parents have reported the following various effects
in subjects who took Vitamin B6 in combination with Magnesium:
- A decrease in self-injury and self-stimulatory behaviour
- Increased interest in the world around
- Increased attention span
- Greater desire for learning
- Fewer tantrums and lessened irritability
- An improvement in speech
- Improved sleeping patterns
- Better general health.
In the 18 scientific studies, and amongst those who have started their
children on the therapy independently, positive effects have been noted
in approximately 50% of cases. These effects usually become apparent
within a few days.
Rimland advises that, when giving the therapy, if no changes are
seen within 3-4 weeks, then it is unlikely to have benefits. In those
cases, the treatment should be stopped.
It is impossible to determine from the results of the research the
extent of the positive effects on the subjects - they are probably
not presented because beneficial effects are difficult to quantify.
In those who benefit, is the change wholesale, or is the condition
only modified slightly? Some anecdotal instances of very dramatic
improvements do exist (for example, where the treatment has totally
curbed extreme behavioural problems), but perhaps these should be
treated with caution, as they represent exceptional results, not the
norm. In the research, patients were seen only to 'improve', 'stay
the same', or 'worsen'. In one report, referring to those three categories
(in the same order), parents rated the effect of 'B6' on their children
in the following ratio: 43:52:5 i.e. a great many benefited, and the
condition of only a very few patients worsened; but the largest percentage
was unaffected. Those whose condition worsened immediately reverted
to their original condition once the therapy was terminated.
The evidence suggests that many autistic people may benefit from
'megavitamin therapy', but to varying degrees. However, the same research
shows that it will by no means benefit every child with autism.
The following is a list of positive effects reported as a result
of taking DMG:
- Improvement in speech
- More eye contact
- More sociable behaviour
- Longer attention span
- Increased ability to tolerate frustration
In addition, DMG has been medically proven to strengthen the immune
system.
In what quantities are these nutrients taken?
Vitamin B6
Taken daily in a large dose- approximately 8 mg per pound of body
weight, or 17 mg per kilo of body weight. This is roughly equivalent
to 500 mg/day for a child weighing 60 pounds.
Magnesium
Taken daily in a dose that researchers believe everyone should take
for optimum health -
3 or 4 mg per pound of body weight, up to 400 mg in total for an adult.
DMG
DMG may be taken in combination with the other nutrients, or separately.
Dr. Rimland advises starting DMG treatment 2-3 weeks before B6, to
enable parents to properly distinguish the effects of the two treatments.
DOSES should be taken daily. To pre-school children parents should
start by giving ½ of a
125 mg tablet with breakfast. Larger children: one to four 125 mg
tablets per day, depending on the size of the child. Adults can take
2-8 tablets daily.
If folic acid is needed (see section on safety that follows), two
800 mcg. tablets should be taken per 125 mg DMG.
It is important to realize that these dosage levels represent averages.
If the child responds well to treatment, it is likely to be after
a period of trial and error, discovering the quantity that effects
the best results in the individual. Levels of B6 required vary from
child to child. The quantities of B6 administered must be tailored
accordingly.
Based on their experience, AFA advises that parents starting their
children on megavitamin therapy do not start other interventions or
treatments at the same time. This will enable parents to see better
whether it is actually the B6 that is bringing about beneficial results.
Amongst parents and care workers there is likely to be a strong psychological
desire to see positive changes. For this reason it is important not
to tell others that one has started a new treatment- otherwise people
may start spotting positive changes where there are none.
Is the treatment safe?
Since the treatment comprises nutrients alone, it is believed to be
very safe. The only recorded side effect of B6 in large doses (up
to 1.0 gram) is in cases where the vitamin has not been administered
in conjunction with Magnesium, and even then it is extremely rare.
It is a tingling in the hands and feet called 'peripheral neuropathy'
that stops as soon as treatment is terminated. It is seen only in
those who are very sensitive to B6.
Tens of thousands of people took large doses of B6 throughout the
1960's, 70's and 80's without any long or short-term side effects.
This sharply contrasts with the track record of some drugs used as
treatments for autism.
With regard to DMG, children sometimes become 'too active' when taking
it. Folic acid (also a nutrient) may be taken to alleviate hyperactivity.
Availability
In the long-term, megavitamin therapy is relatively expensive - in
the sense that it is a continuous added expense - but the trial period
need only take three weeks.
AT present, B6 and Magnesium in a prepared form cannot be obtained
in India. One recommended supplier in the U.S (Kirkman Company of
Wilsonville, or 97070:
Tel. 503/694-1600, 800/245-8282; Fax: 503/694-1603)
produces a flavoured formula called Super Nu Thera 500 containing
B6, Magnesium and 20 other nutrients. The cost of the powder form
(450 grammes) is 42 dollars plus 12 dollars postage.
A cheaper alternative is preparing the treatment oneself. The 'raw'
components (pyrodoxine and milk of Magnesia) are on sale in India
and the treatment can be put together in the following quantities:
(information supplied by Autism Institute)
Megavitamin Therapy: A Choice for Parents
When 'megavitamin therapy' research arrived on the scene, there was
wide skepticism in the medical research community. There was a reluctance
to accept that such remarkable improvements in a child with autism,
as were documented in Dr. Rimland's studies, could be the result of
a nutrient as innocuous as Vitamin B6, especially since previous treatments
for persons with autism used complex and powerful drugs, with hit-and-miss
results.
Wider study by the medical research community was no doubt inhibited
by the fact that vitamins are widely available without prescription,
sold by many businesses at competitive prices. Vested interests dictated
that such research was impractical - it would not open up large financial
yields from new markets. It has taken from the mid 1960's until now
for the therapy to become widely recognized as a practical and beneficial
treatment for a large section of the autistic community. However,
results in India have yet to be collated.
There is however one interesting development. With an increase in
awareness among the paediatric community in India the average age
of diagnosis in the country has gone down. As a result many younger
children are now on the megavitamin therapy. Perhaps following on
this there appear now to be larger numbers of children who reportedly
show improvement on the therapy as compared to earlier years.
Is this increase in numbers due to the reduced age at which the vitamins
are being administered?
An age when the growing child is most receptive to the effects of
vitamins?
Hower, these reports must be treated as purely anecdotal as so far
no real study has been carried out.
Biological Interventions
Available For Treatment Of Autism/PDD: A Point Of View
Dr Anjali Kapoor
(The author is based in Minneapolis, USA)
Since the last two years there has been a lot of work done from the
biological angle. 'Recovery' or 'self dependence' has become a possibility.
The statistics in clinical trials speak for it. I have been following
biological treatment of autism very closely since the last year and
have talked to many doctors and parents involved. I give here a compilation
of information that is hopefully feasible to follow in India. This
does not constitute medical advise. Every parent must talk with their
child's doctor before starting anything
.
Along with the Teaching therapy, the following treatments have proven
to be very useful for autistic children.
1. Consider stopping all further vaccinations very seriously after
consulting the child's doctor - many experts believe that autism is
an immune problem related to adverse reactions to vaccination.
2. Remove all milk and wheat from the diet. These foods act as sedatives
for an autistic child. Many medical publications have confirmed that
milk (yogurt cheese, cream etc) and wheat products are harmful for
many autistic children.
3. The following vitamins have been very helpful for autistic children:
o Vitamin B6 -200-500 mg: depending on weight of child
o Vitamin B complex: 1 capsule daily
o Magnesium: 400 mg daily
o A good general multivitamin tonic
o Cod Liver Oil (Vitamin A): 1 tablespoon daily
o Vitamin D (although in India it is not a big issue due to the weather)
o Dimethylglycine (get it from some big chemist shop): 250 mg daily
4. Consult a good immunologist and do tests to find out if the child
has a candida or virus infection in their body. The viruses to check
for are CMV and Herpes virus. If tests show child has these infections
give proper medicine (Nystatin/ diflucan for candida and gangcyclovir
for virus) immediately. These infections can effect the brain functioning
of the child and treating them helps the child a lot.
5. Consult your psychiatrist and start the child on a very low dose
(3-4 mg) of paroxetin or any other Selective serotonin Re-uptake inhibitor.
This drug helps to improve blood flow to the brain. However, since
it's a strong drug, use it under strict medical supervision.
6. Secretin has proven to be helpful for some autistic children.
Consult your doctor and find out if you can obtain a secretin infusion
for the child. This medicine is made only in Japan and USA and is
very expensive. It could cost about 4-5 thousand rupees and repeated
infusions have to be given every 3-4 months if a child responds to
the first infusion. So the family needs to look at their financial
situation and decide. Again, every autistic child does not respond
to secretin but a few do.
7. Some doctors have treated autism with low dose steroids in the
past, newer non-steroidal anti-inflammatory drugs (Rofecoxib, Nimesulide)
provide the same anti-inflammatory effect without the side-effects
associated with steroids. (Nimesulide is available in India, I am
not sure about Rofecoxib which is an expensive drug).
There are many more issues like heavy metal chelation, liver functioning
etc, but I am not sure of it's feasibility due to the high cost. I
hope the information given is of some use.
"My opinion, based on these Rimland studies and others,
is that
treatment with vitamins and minerals should be tried
for every autistic child"
- Linus Pauling, two-time Nobel Prize winner.
Autism, Joshua, The DAN-Protocol
And Immune 26
Greta Katz
Our son, Joshua is the focus of this feature. Unable
to nurse, Josh was started on milk-based formula. His early life was
complicated with an upper respiratory infection at six weeks, multiple
ear infections, eczema and asthma. In retrospect, Joshua's pupils
were unusually dilated by 11 weeks.
At twelve months we expressed our concern about his lack of speech.
We proceeded with early intervention and speech therapies, yet, by
twenty-two months, Joshua had lost eye contact, no longer responded
to his name, had almost no interest in socializing, walked on his
tiptoes, insisted on having toys set up in a line, had acute outbursts
with little regard to pain and no interactive speech. By four years
old, Josh remained approximately sixteen months delayed in both his
expressive and receptive speech. He was unaware of his surroundings,
yet he was considered very "high functioning" autism spectrum.
We diligently took on the DAN-Protocol under the direction of Dr.
David Berger. We worked to combat the excessive yeast overgrowth,
removed all gluten and casein from his diet, started using DMG for
his speech, removed heavy metals with DMSA, and of course supplemented
his body with Super Nu Thera, Cod Liver Oil, Taurine and varying other
vitamins and minerals.
Joshua's results with the DAN-Protocol are undeniable! Every three
months we seemed to be looking at a new child. His eye contact began
to normalize, his speech was turned on, his interactions with family
and classmates became appropriate, and he began to readily demonstrate
clear thought processes and spontaneous ideas and plans. Although
Joshua's progress had been phenomenal, it was highly recommended that
he repeat Pre-K due to his lack of socialization skills, maturity
level and receptive speech issues. It was unknown whether he had absorbed
the year's lessons.
During the time we were practicing the DAN-Protocol, I was introduced
to a start-up networking company, Legacy for Life and Dr. Helen Greenblatt.
She has devoted her career and now works through DCV, inc. to perfect
the use of hyper-immunized eggs that deliver human antibodies and
immune cofactors directly and naturally into the human system. There
are numerous equally astute physicians and scientists that have worked
on this project and the idea of medical technology finally addressing
our immune system with something as simple as breast-feeding, passive
immunity, was fascinating. What I did not realize at the time was
the effect this would have on my son, nor the applications it would
have within the Autism Spectrum community. Supplementing the immune
system with exactly what it needs to combat the daily bombardment
of viruses, fungus, bacteria and free radicals frees it up to regulate
the inner workings of our bodies quite efficiently.
We started Josh on one adult serving in the morning. The most remarkable
effect was that within 10 minutes his pupils went down as with Cod
Liver Oil, yet faster. Within 5 days, they remained down! Immune 26
has also demonstrated through clinical trials to maintain the health
of the gut, control Candida and modulate autoimmune disorders. It
seemed logical, that since Josh had responded so favorably to the
gf/cf diet, or removing the offending foods, that perhaps Immune 26
could help his body deal more efficiently to his sensitivity to gluten
and casein.
Unkown to his doctor, we allowed him to have wheat and dairy. Not
only was he happier, he did not slip back into any odd behaviors.
He is energetic, alert, aware, teachable, kind, grounded, centered
and calm. His pupils remain down.
After 10 weeks of being on the Immune 26, we were at the school being
tested. Josh held a conversation with the speech therapist for roughly
30 minutes, answering question after unrelated question with ease
and great pride. We were informed that he was more than ready for
Kindergarten and that they would not "red flag" him. His
teacher still has not picked up on any issues with Josh. He remains
focused in a group of thirty students, versus six last year, participates
appropriately and there are no reports of any behavioral problems.
At home he complains until we copy his sister's First grade homework
for him to complete as well. He excels at maths and reads more efficiently
than his older sister.
I do not advocate that others put their child back on wheat and dairy.
I suggest that Immune 26 is included as an additional alternative
to use along with the DAN-Protocol and something that should be investigated
and considered for any child within the spectrum! Feel free to comment,
or contact me:
Greta Katz, 2040 Greenview Shores Blvd
Wellington, Florida 33414
Email: Jkatz10920@aol.com
The Structure of the World Autism Organisation
Paul Trehin
WAO Honorary Secretary General
The WAO structure is similar to that of many organisations. It has:
o The General Assembly
o The Council of Administration (CA)
o The Executive Committee
The General Assembly is the supreme decision body. The General Assembly
sees a gathering of all WAO members. The meeting of the General Assembly
can be ordinary: called on a regular basis, or extraordinary: called
for a special reason. One of the prerogatives of the General Assembly
is to elect members to the Council of Administration. In addition
the General Assembly elects the President.
Members are elected to the Council of Administration (CA) for a period
of four years. There are no more than 25 members. The CA members represent
the ordinary, associate and individual members of WAO to conduct the
policy of the organisation.
Meetings of the CA should be called regularly, at least once a year.
However, given the limited resources of WAO, being a very young organisation,
CA meetings have to be limited most of the times to"virtual meetings"
through Internet, e-mail and discussions.
The discussions are confidential, which means:
o it is only open to CA members
o its content should not be shared outside the CA
Concerning the internal WAO CA discussions, only texts and comments
voted by the council of administration can be made public.
Members of the CA elect the members of the Executive Committee
The Executive Committee sometimes also called 'Bureau' is composed
of :
- The president
- The two vice presidents
- The treasurer
- The honorary secretary general
The Executive Committee is in charge of day to day management of
WAO.
The Executive Committee members meet every three or four month. During
these meetings, the executive committee members discuss proposition
for WAO actions within the WAO general policy lines.
Executive Committee meetings are open to CA members who can be present
on the date and at the place of the meeting. Only executive committee
members take part in votes at this level. Major decisions are submitted
to a vote by the Council of Administration. This vote is organised
by the executive committee and is implemented via email.
In summary, The General Assembly meetings are calling for all WAO
members to be present or represented. The Council of Administration
meetings call for all WAO CA members to be present or represented.
The Executive Committee meetings call for all WAO Executive Committee
members to be present or excused. WAO CA members are invited to participate
according to their possibilities.
No one knows why autistic children are
often so beautiful
But it can be a great comfort to their parents
Charlotte Moore
(Contributed by a parent. Source unknown)
The recent suicide of Helen Rogan received considerable media attention.
Her body was found below the Hounds Ghyll viaduct, in Consett, Co
Durham, with that of her 11-year-old son Mark. Mrs Rogan was a single
mother; Mark was autistic.
I have no intention of commenting on Helen Rogan's despair. It's
not something I've experienced. But one comment from their neighbour
struck a chord: "Mark was a beautiful little boy. To look at
him, nobody would have known he was suffering any illness." It
is a surprising
fact that many - though by no means all - autistic children are exceptionally
good-looking. Of course, every mother believes her children to be
the most beautiful on Earth, but anyone who knows my sons would agree:
George and Sam are extremely physically attractive.
Hans Asperger, who published a pioneering account of autism in 1944,
remarked on the ethereal beauty of his patients almost as if it were
a diagnostic symptom. No one, so far as I know, has yet advanced a
hypothesis to explain this.
Is it the absence of the more disfiguring human emotions - guile,
malice, greed - which keeps the autistic face characteristically beatific?
The eyes are large and bright, the smile undirected and serene. The
autist often gives the impression of concentrating on an inner world,
or of looking through and beyond us to something out of reach.
For us ordinary mortals, does beauty have to contain an element of
inaccessibility? One thinks of the beauties of fairy tales, untouchable
in rose briars or glass coffins; the handsome prince whose face can
only be glimpsed at midnight, and who then vanishes. Then again, John
Wyndham's Midwich cuckoos were beautiful, brilliant children planted
by aliens among ordinary families in an English village.
In Autism: Explaining the Enigma, Uta Frith writes: "Parents
of autistic children find this story deeply evocative of.... their
own experiences." Certainly, we struggle to associate beauty
with impaired intelligence. Asperger writes of the autist's "strikingly
intelligent physiognomy"; such an appearance can be misleading.
While IQs of every level can be found on the autistic spectrum, in
the majority of cases there is some mental retardation, and the handicap
is often profound.
Yet it is hard to believe that a truly handsome child is not withholding
some hidden intelligence. One mother I know, whose three-year-old
is undergoing the diagnostic process, was told by a health professional,
"He's so beautiful. What are you worrying about?"
It's ironic that these children are, typically, devoid of vanity.
George and Sam do not consider themselves handsome, because they have
no objective means of considering themselves at all. They react to
other people's looks, but only according to their own criteria - George
likes blond hair; he doesn't like beards, especially black ones. They
have no notion of fashion, but wear
their eccentrically assembled clothes with grace.
Some parents report that their children's good looks cause them to
be unfairly judged. The kind of in-supermarket behaviour that would
be overlooked in a child with a visible condition, like Down's, provokes
disapproving comments. "It's so sad, she's such a pretty child."
I've often heard this said. But why is it sad? My children's beauty
has always been a source of solace to me. When you've had a terrible
night with a small baby, you can restore your affection for the child
by dressing it up and making it look really sweet. Similarly, I can
rise above some of the more "challenging" behaviours of
George and Sam through the simple satisfaction of gazing at their
perfect faces.
It means that there is always something positive for other people
to say about them. People want to like attractive children, and that
is a good start. It can't be sad for the child. It can only be sad
for the parent who still clings to the fantasy of what they hoped
their child would be, and that is a fantasy that you really do have
to get rid of.
For me, their appearance comes under the heading of "Reasons
to be Cheerful". I never tire of being told how beautiful my
children are because, unlike most aspects of this baffling condition,
it is something certain. Yes, they are gorgeous, aren't they? Thank
you very much.
Play
Indu Chaswal
Children with autism, most of them at least, don't play. If they
'play' at all it is usually in a repetitive ritualistic manner. The
most difficult time for the more able child with autism in an inclusive
school set up is the one that is the easiest for his typically developing
peers: recess or break time. While other children look forward to
the break as a time when they have the most fun, a child with autism
dreads recess with its unstructured expanse of time. A time when he
would love to be one with his peers but without the natural ability
and the knowledge and instinct to guide him through the maze.
In the last issue of Autism Network (August 2001) we shared with
our readers how play can serve as an important medium of informal
learning and immense pleasure for our children. In this issue we suggest
some play activities and simple games that will help parents and carers
to spend time with their children in an interactive way and through
which children can also learn to keep themselves occupied. These activities
have been developed keeping in mind the difficulties and strengths
of our children in areas of socialization, communication, motor and
cognition, imagination, and also sensory processing and integration.
The activities can be used as basic guidelines to develop play activities
at the level of each child.
Activities for very young children
Children like rhythmical movements. Such movements also help children
in developing body control or balance.
This is a familiar activity. We lie on the floor with our knees up and
bent, feet together and toes pointing up. Place the child on the 'seat'
made by our feet. Slowly move feet up and down so that the child experiences
a steady up and down rocking motion. Start with slow, gentle movements
and then very steadily increase the rhythm. Pair the activity with familiar
rhymes that go with the activity such as 'row row row your boat'. This
activity can also be done sitting on a chair.
Place the child on a thick bed sheet. Two persons hold the ends of
the sheet firmly and swing the child sideways. If my child does not
like such movements, I stop the activity. If a child has other medical
conditions we will want to take medical advise.
Anticipation games
These can be very interesting and if we are creative we can vary them
and not only make the child enjoy them but also teach various things.
Cover the face with a dupatta or a cloth. Say to the child "where's
mama?" As the child tries to remove it, show happiness and make
a sudden, interesting sound like "Here's Mama!" or "Ah-haaa!"
The child can learn that if something is out of sight it does not necessarily
mean that it does not exist any more. Give a turn to the child. If he
does not cover his face, we can do so by covering his face with our
hands and then pretend to find him.
Play Activities for an older child
The same surprise games can be made more sophisticated as the child
progresses.
-Select an item (food/toy/an obsession of the child like a string or
a twig). Place it under something like a pillow or an inverted steel
glass in front of the child and say "where is the toffee?"
The child then finds it. If he can't, help him.
- If the child is learning names of things in his environment, then
hide the item under or in a glass/mug/cup/bag/pillow (depending on the
item he is learning to name) and say "find the toffee in the mug"
(or wherever it is).
-As the child learns concepts (colours/size) the same activity can
be made more sophisticated to suit the child's cognitive level. Give
instructions like "Find the toffee is in the red box" or "Find
the toffee in the small cup".
-We can play object identification games by feeling. Take an empty
carton like a shoe box and make a hole just big enough for the child's
hand to go in. Put a common object (spoon/comb/ball) in the box. Let
the child put his hand in the box, touch and feel object and guess what
it is. The activity will have to be structured based on the child's
ability. For instance we may need to show the objects before putting
one in.
For a child who does not speak there are alternative ways of getting
a response. One way would be to take identical pairs of objects. For
example if the box has a spoon, you let the child feel the spoon. Then
hold an identical spoon and a cup in front of the child and teach him
to touch the one that is the same as the one he felt in the box.
Hide objects that the child likes in a heap of sand or dal and let
him feel in the heap and find the object.
Autism in Goa
Dr Nandita de Souza
Sangath Centre, Goa
The Sangath Centre for Child Development & Family Guidance, Goa
works in the field of child and family mental health. Often times when
we talk about autism in our attempt to increase awareness about childhood
disabilities, we get the response "Oh, autism is not a problem
in Goa". The facts however tell us otherwise.
The Centre has been providing assessment and therapeutic services to
children with autism for the last 3.5 years. It has also been appointed
by the Government, as a representative on the Local Level Committee
of the National Trust for the Welfare of Persons with Autism, Mental
Retardation, Cerebral Palsy and Multiple Disabilities. Recently Sangath
completed a study of the children diagnosed with autism at the Centre
during a 3-year period from May 1997 to April 2000. Out of the 1046
children assessed, 52 (around 5%) were diagnosed to have autism. They
ranged in age from 6 months to 15 years, with a mean age of 4.5 years.
There were 39 (75%) boys and 13 (25%) girls. 40 (77%) children were
Goan. 46% (24) children had normal intelligence, whereas 48% had some
degree of mental retardation. Only 8% of the children had convulsions.
A more detailed analysis of 26 of these children with autism could
be performed after initiating the use of a computerized database to
record patient information. 96% of them were referred with speech problems.
Other problems at referral included developmental delay (31%), school
difficulties (8%), hyperactivity (12%) and other behaviour problems
(19%). Paediatricians were the source of referral in 50% of cases.
Only 15% of the children were in mainstream school and 23% in nursery.
35% belonged to the preschool age, but were not attending school. Despite
the chronicity and severity of their condition, 73% of the children
consulted the professionals at the centre only 1-2 times and did not
avail of regular therapy. Only 15% had speech and language therapy and
11% received multidisciplinary care. The general outcome was not known
after 1 year in 65% children. In the remaining 35%, 19% had no change
in their condition and 16% improved.
These findings clearly indicate that there is a great need for increased
awareness about the necessity of regular and intensive therapy for children
with autism. Schools for children with autism, preferably in an integrated
environment within mainstream educational facilities, are the only way
towards enhancing independence and creating a positive future for these
children. Trained teachers who are sensitive and skilled enough to address
the unique needs of this population are a dire necessity.
Coming to AFA: Intensive Sensory Intervention
And Music Sessions
A visiting consultant at Action for Autism with 20 years of U.K National
Health Service experience - will be running a three-month programme
from January 2002, comprising one on one sessions in Sensory Intervention
and Music. These will be one hour in duration and will run from Tuesday
to Saturday. There will be a small charge for the sessions to cover
the cost of materials.
Drawing on her extensive experience in the fields of child and adolescent
psychiatry and counselling, as well as her keen interest in the use
of sensory interventions and the therapeutic use of sound and voice,
the sessions will be tailored to the individual's needs.
Most individuals with autism experience some degree of sensory disintegration.
The sessions - which will include music, singing and rhythm, massage,
aromatherapy, visual stimuli, and water/
sand/'rough and tumble' play - will be designed to reintegrate the senses
of the particular child.
Attention will be given to both the child's inner (vestibular and proprioceptive)
and outer (touch, smell etc.) senses.
Within the hour there will be 45 minutes direct contact with the child,
with 15 minutes for
consultation with parents concerning identified sensory difficulties
and positive steps that can be
taken at home to reinforce the therapy.
Please contact Action For Autism at: Tel.6416469 or 6416470 for further
details, leaving your name, contact number and preferred day/time of
week.
Autism Week in India
14 - 22 DECEMBER 2001
For the first time the Autism Community all across the country is observing
Autism Week India in the third week of December. To mark the occasion
a series of events have been planned in Chennai, Bangalore, Delhi, Kolkata,
Mumbai, among other cities. At the time of going to press we have schedules
from Mumbai, Delhi, Chennai and Bangalore.
CHENNAI
o Screening camp by Maitili Cari at We Can
o Walkathon
o Launch of school for children with autism by We Can
For details contact:
Indrani Basu, We Can, Tel: 4464655,
E-mail: basuindrani@hotmail.com
DELHI
o 14 December: Autism: A Medical Perspective, National Conference on
Autism at the IIC on medical issues that affect our children. To be
inaugurated by Major HPS Ahluwalia, Chairman RCI
o 16 December, Sunday: Walk for Autism at 11:00 am at India Gate. Nandita
Das will flag off the walk.
o Street play by a young theatre group. Live music.
A delegation will thereafter proceed to Rashtrapati Bhavan to make
a representation to Rashtrapatiji. Persons with Autism, their families,
and friends will all join in the walk that aims for awareness and sensitization
of the wider community to this complex and often misunderstood syndrome.
A number of leading citizens will join the walk.
o 19 - 22 December: 2001 VIEWS FROM PLANET AUTISM, at the Habiart Gallery,
India Habitat Centre. Group show by young artists to be opened by Sm
Shovana Narayan.
o 23 December: Talk on Holistic Treatment by Dr Zenobia Sharma
For details contact: Action For Autism
T 370 F Chiragh Dilli, New Delhi 110017
Tel: 6416469, 6416470, 9810225923
E-mail: autism@vsnl.com
BANGALORE
o 13 December: Talk by Aloka Guha, Chairperson, National Trust on National
Trust & Autism - KPAMRC
o 14 - 16 December: Workshop by Dr. Prathibha Karanth: Communication
(sponsored by RCI) but limited attendance - max 25 including her trainees
and parents
o 16 Dec: Rally and walkathon for awareness by India Autism Forum
o Three-day Workshop on Autism by Swapna Thambi Nair
o Medical conference by DEC
o Stress Management - ASHA
For details contact:
Dr. Veronica Mathias
60, Vittal Mallya Road, Bangalore 560 001
Tel: 80 2213670
MUMBAI
o Party at Forum For Autism Awareness (FAA) Library for all families
o Distribute information leaflets on autism and FAA at major railway
stations, hospitals and other public places in four languages and targeted
at women
o Issue a press release on Autism, FAA, and the events for Autism Week
o Film show on autism followed by a talk at the BCL or the USIS
o Publish articles in the media through the week
o Give talks at schools on autism and inclusion. This will carry on
for the next six months
For details contact:
FAA 2nd Floor Block
A Jeshtaram Baug, Dr Ambedkar Road Dadar, Mumbai 400 014 Telephone 201
1908
E-mail: sraja@math.tifr.res.in
o Ed: We hope that everyone will take time off to participate - and
enjoy - the activities being held in their own cities!
Update on Open Door
This quarter of the year was marked by a series of educative and interesting
events starting with a workshop by Lisbeth Gahrn.
Action for Autism's first Diwali Mela took place on the 10th November,
in a big room on the ground floor of the centre specially decorated
for the occasion with paper candles and diyas. It was a huge success,
despite a slow start. Work by the older boys at Aadhar, our vocational
centre, was showcased. A range of their work was on sale and sold well:
decorated pots filled with treats, stylish bags and mats made on the
loom, painted cards and napkins, wrapping paper and cake.
We had a lot of visitors, parents and friends alike, and were even
treated to an unexpected, impromptu performance by the group of enthusiastic
drummers, singers and guitarists who play a monthly jam session at the
Friends Club. Soon everyone was dancing or bouncing on the trampoline!
The local community of Chiragh Dilli and Sheikh Sarai must have wondered
at the crashing sounds as members of the teaching staff added to the
clamour with percussive instruments improvised from plates, cake tins
and spoons!
Annual Training Workshop 2001
The annual training workshop for parents and educators, an intensive
four-day event, took place at the Indian Social Institute in October.
About 80 parents, attending from all over the subcontinent, participated
in a lively series of talks and discussions ranging from on general
aspects of Autism
to issues at school and home, concerns stemming from inclusion, teaching
methods, challenging behaviours, sexual concerns and issues of self
independence.
The workshop, sponsored by the Danish Society for Autism, was opened
by Dr Carl Hugod of the Royal Danish Embassy who stayed to attend the
opening session.
AS in other years a highlight of the workshop was a video link to another
room where a demonstration classroom had been set up so that participants
could observe. The workshop offered a valuable opportunity for parents
and care workers to meet, exchange information and ask questions.
While we go to press the Autism Week ahead promises an exciting time
for all. In addition there is the Christmas and Year-Ending Party to
look forward to!
Helpline
Q. I am a resident of Kolkata. I have
a child of two years of age. As per the Doctors she has some abnormality
in responding to our spoken speech. Though she sometimes responds to
our spoken speech but she has not yet developed speech and only utters
fragmented words like "Dada", "Baba", "Kaka",
"Ma' etc. Otherwise she continues to utter words as per her own.
In this circumstance we are very upset as some of the doctors have said
that she may have some symptoms of Autism. Please provide us information
on this subject like:
1. The symptoms of Autism
2. Its treatment and chances of recovery
3. Whether autistic child can lead normal life as others
A. From the information about your daughter
that you have provided it is possible your child does have Autism. Autism
is a behavioural syndrome and by the age of two you can see symptoms
in the social, communicative and play behaviours. There are a wide range
of these behaviours and all children do not show all of these, as Autism
is a spectrum disorder.
You have asked about the treatment and the chances of recovery. Autism
is a life long developmental disorder but with an early diagnosis such
as your daughter has received, and an intervention (training and teaching)
that is very specific to the special needs of your daughter you can
help her to progress towards her maximum potential.
Many people with autism can lead a fairly independent life but that
depends to a great extent on the degree of autism and the kind of the
training that is given. Training, not only refers to teaching but also
the comfort and acceptance from people in the child's immediate environment.
This is of course true for every child whether typically developing
or not. But for the child with autism, living in a confusing world where
social rules appear so arbitrary and confusing, we believe that comfort
and acceptance is crucial.
One of our therapists shall be visiting Calcutta at the end of December
for a two-week period. If you want to contact her, do get in touch with
us for details.
Q. My son has been diagnosed with autism
at Hyderabad. Right now he has the following features: hand flapping,
avoiding eye contact, and not responding to his name.
A. The behaviours you have queries about
are common difficulties with children having Autism. It will be good
to start working on these immediately.
Hand Flapping: Children with Autism are over sensitive or under sensitive
in at least one of the senses (hearing, vision, touch, smell, taste,
body balance) at any given time. Stereotypic movements like rocking
or hand flapping are a way of coping with these difficulties. Stopping
a child from doing them is not helpful as these behaviours often provide
comfort. Instead, at a time when he is not flapping his hands, give
him relaxing exercises like pressing his body gently (or even very hard
if that is what he prefers. These movements will also reduce once your
son has a routine for his day, like going to a school, and when he is
taught other ways of occupying himself.
Eye Contact: Making an eye contact can be very painful or just difficult
for many persons with autism. However we can work on increasing eye
contact. Sit with the child in such a way that your eyes are at his
eye level. For example place your son on a chair while the adult sits
on a low stool or cushion on the floor. Interact with him by doing things
that he likes like singing, playing with a favoured toy while holding
it between your and his eyes. Then for a sudden moment stop singing
or remove the toy from your joint line of vision. There is a very good
chance that this makes the child look at you. The moment he does so
praise him big or acknowledge big saying something specific like "(daughter's
name) gave me a look! Great looking!"
If we make ourselves very animated, very energetic, the child will be
more interested in us and this too will help increase eye contact.
Not responding to name: Many a time our children 'hear' their names
being called but have not learnt how to give a response, that is the
social response, that means looking at the person who is calling. Start
teaching the child to do so when you are in the same room. Call his
name very clearly and slowly. Wait for a few seconds. If you get a look,
praise the child. If not call out again and this time another person
can gently turn the child's head to your direction.
Always have some kind of consequence for his response. Turning his
head to look at you must never be a meaningless exercise. So when he
looks at you, praise him and give him either a material reward like
a food item, a favourite toy, or anything the child favours, or a social
reward like a praise or a hug.
When you call your child try to vary your tone for example when calling
out his name use a musical tone, another time a squeaky voice, or a
whisper on another occasion. This will make him look at you with surprise!
And of course remember to praise him once he looks at you.
Q. We have a five-year-old son whose behaviour,
intelligence, reflex and mental expression are not like other children
of his age. We were informed of AFA by the Institute of Child Health,
Calcutta, who say he is autistic. Please advise us on what we can do
to help our son:
1. He learned to talk a bit late.
2. His fondness of music, TV programmes, general play and interest in
nature and animals, trees, the moon and sky is day by day decreasing.
3. He was admitted to a local nursery school but in no way is he having
any interest in books, writing or drawing.
4. Only he loves to play with toy buses.
5. He has some hand mannerisms that are peculiar as well as strange
sounds he makes with his mouth.
6. He responds to only such talk as he likes.
7. Sometimes he does mischief, drawing the attention of elders.
A. Let me explain a little about the
nature of autism; it will help you understand why your son behaves in
the way he does.
Autism is a lifelong condition. When a person has autism there are
difficulties in three main areas. They are: communication, social skills
and imagination.
Many children with autism do not develop speech at all. Some of those
who do, may speak very little and their speech is mostly need based
that is they speak when they need or want something. They will ask for
things they need like "water" or "food". Other times
they may use words which seem to make no sense to us. All this is because
they have difficulty in understanding how to use language.
A child with autism may not respond to certain questions because it
makes no sense to him, like "what is your name?", "what
happened at school?" etc. But if someone said "do you want
a toy bus?" it would be meaningful because he likes playing with
toy buses.
Children with autism have few social skills. Therefore they very often
do not interact in socially appropriate ways or know how to draw attention
to themselves.
How would a child without autism draw attention to himself? He may
do something that he knows his parents want him to do. He may draw a
nice picture, or recite a poem, or sing a song. But a child with autism
does not know how to get attention and like any other child he wants
attention or wants to be able to manipulate his environment in some
way. Therefore he may do something which will seem a mischief. He may
be scolded but to him it is still attention, therefore even though he
anticipates a negative reaction to his behaviours he may want to do
it. Therefore you could try and totally ignore what mischief your son
has done. But when he is behaving in a way you like, let him know this.
Praise him, give him attention - then he will learn to get attention
in an appropriate manner.
You have mentioned that your son only plays with toy buses. What you
can do is to join him in his play. Talk to him clearly about the buses.
Where are they going? Who is sitting inside? Tell him, but avoid asking
questions. Just make comments. By joining him in his play you will be
interacting with him in a way he understands. Then slowly you can teach
him other forms of games.
In your letter you have said that your son has certain mannerisms and
makes peculiar sounds. You may see many children with autism who have
what are known as sensory difficulties. We all take information about
our environment in through our senses. In children with autism, one
or more of the senses may be over sensitive or under sensitive. So a
child may cover his ears to cut out a sound or make strange sounds with
his mouth to cut out a particular sound. Children with autism often
flap their hands or hop to help them to deal with sensory difficulties,
and this in some way relaxes them.
Q. It has been one year since I put my
son on GFCF Diet. The improvement I see is from his two or three word
sentences he can speak much more. He is able to recall events, read
story books. His grip is weak but by making him write everyday he has
improved. He draws and colours and can write fairly well. I am working
on teaching him taking others perspective and predicting events, WHY
which is most difficult to teach.
I used to call children home for play sessions during the summer vacations.
Initially he resisted but then started enjoying. He liked the action
games like follow the leader, jumping over, statue. He shows little
interest in board games. In mainstream school he would be required to
follow instruction in a group which it seems he is not responding so
well. What can I do about it. Is there any book in AFA regarding social
skills that would be helpful in school?
A. It is good to learn that your son
is doing so well. Regarding predicting events, to do this a certain
amount of visual clarity is required. How are you doing this? Are you
using calendars and, if it is events in the same day, may be schedules?
He needs to know and understand how his own time is organised before
he can start predicting events.
Also your son can be taught to take other people's perspective but
first he needs to identify his own emotions and then those of others.
There are books and activities on this subject. Your son enjoys action
games because it is clear what he has to do and the enjoyment is immediate,
but board games where the aim is winning is rather an abstract concept.
You could get him to play some structured physical games first and then
move on to simple table top games where it is very clear what he is
supposed to do.
You will also need to work on joint attention especially if you want
him to sit in a group and pay attention. There are a number of things
one can do to enhance social skills some of which we have discussed
in earlier issues of the journal.
You will also find useful material in the AFA library.
Q. Is it possible to teach behaviour
control like toilet training, speech and language development through
audio visual approach (VCR) or through computers? Do you have such video
cassettes or discs for a child with autistic features and no speech
so she could be taught to indicate desire for toilet?
A. You have asked an interesting question
viz. - is it possible to teach behaviour control, toileting as well
as speech and language through the use of videocassettes.
As you are aware, most persons with autism have styles of learning
that are somewhat different from the non-autistic population. Often
times they do not learn social and communicative behaviour through imitation
and observation.
An effective method of teaching behaviours to individuals with autism
is through specific responses to specific behaviours.
I am not clear from your letter whether you want video cassettes for
use with the child, or by the parents. Our library has a video cassette
called: "A family's visit". The cassette is of a BBC program
about a family that in part illustrates a method of dealing with some
basic behaviours such a "tantrumming". We are not allowed
to make a copy of it, but it can be watched in the library. You may
be able to obtain a copy from the Option Institute.
Regarding a video to teach communication to a non-verbal child I want
to stress that it is crucial to work on developing the child's receptive
and expressive communication skills regardless of whether a child has
speech or not. In addition there are alternative modes of communication
that may be taught.
For instance there is a methodology called Picture Exchange Communication
System (PECS). Using PECS a child is taught to use word or picture 'cards'
in order to communicate. Some children also use sign language, mostly
makaton - a sign language developed in the U.K. Using modes of communication
alternate to speech reinforces a child's communication skills and increases
the possibility of the development of speech. Our library has a copy
of the PECS teaching cassette. A copy of this may be obtained from the
Delaware Autistic Program USA.
We are not aware of any cassettes for teaching toilet training. However,
toilet skills can be taught with consistency and persistence. Please
refer to Toilet Training: Vol IV No 3 (1997) and Learning to Wash after
a Toilet Job: Vol VI No 1 (1999) of Autism Network.
Q. I am one of the regular users of your
web site. I live in Hong Kong and have a son who is 3 years old and
autistic. He has constipation frequently. I want some advice whether
I can use Sat-Isabgol - a kind of husk which is a popular North Indian
natural remedy for constipation. I am not sure if this contains gluten
as my son is on gluten free diet. I wonder if you have any experience
of any parents there using this for their children or if you could advice
on this issue.
A. Sat Isabgol is one of the best natural
remedies for constipation. Many of our parents use it. We do not have
sufficient information on whether it contains gluten. Off the cuff I
do think it is gluten-free.
However in a couple of weeks we will be hosting a conference on medical
issues in Delhi which will, amongst others, have a presenter from the
UK, a doctor who is very involved in biomedical issues. I will ask her
opinion when she is here and mail you her comments. If she has any printed
matter that is helpful we will mail that as well.
Letters to the Editor
I spent some years in Delhi. I left Delhi and came to the US when
my son was one and a half years old.
We started noticing his abnormal behaviour between that age and
two and a half. He was diagnosed as autistic by age three, after I sent
him to a nursery school and he was thrown out within one month. He actually
started special education after three and a half. Initially his condition
was bad - no speech, no eye contact, a lot of repetitive activity etc.
However, the school system here is wonderful. I was also educated a
lot on this subject over a period of time by the school and public libraries.
Over the last three and half years, his progress is slow but steady.
His overall condition is far better now.
A special education classroom is always a part of regular elementary
school. Typically, the special education classroom has 6 or 7 students,
all with autism spectrum disorder and almost the same number of teachers.
Generally the school time is divided amongst the following activities
- independent work, direct instruction in reading, math etc., speech
therapy, music therapy, occupational therapy, integration with main
stream classroom for activities specified in each student's IEP.
In the case of my son, he goes to mainstream second grade classroom
for arts, music, lunch, recess, and physical education. But the entire
time of school, these kids are accompanied by a special education teacher
or aid in 1 to 1 ratio. The teachers have also helped me to set up an
independent work system and direct instruction system in my own home.
They have trained me to handle misbehaviour, teach self-care, introduce
different foods to my son and a lot of other things besides. Also, a
lot of books are available on autism in public libraries. I have read
a few of them and gained a lot of information.
I would love to share my information and experiences with parents
connected with Action for Autism. I really don't have much idea about
the education system for autistic kids in India. Some time back, I searched
for a school in Mumbai and Pune but I understand that the special schools
that admit these kids are not at all linked with main stream schools.
I understand that autistic children don't get a chance to mix with normal
children. I feel sad about it. But I will be interested to know more
about how parents handle education in India. Eventually if we find the
right opportunity, we wish to come back and settle in India. I know
that public awareness about autism is growing in India as compared to
six years back and I really wish I could become a part of that movement.
I would love to help Action For Autism in whatever possible way. My
best wishes.
GEETSHRI BORGAONKAR
USA
My name is Jesley Johnson and I am a sixteen year old Indian living
in America. I plan on being a pediatrician specialising in autistic
children. I was very surprised to find that there is an organisation
to help the autistic in India and even more surprised when I saw how
active it is and can be seen on a global level. I just want you all
to know that what you are doing is wonderful.
J.J.
Washington, USA
I am the father of a four year old autistic boy. Thank you for the
help and attention. I would like to add that your organization is doing
good work. As a parent I really appreciate the efforts you people are
putting in.
S. S. MAZUMDAR
Bangalore
I am planning to come to India once again to do AIT in Feb 4-15,
2002. Please let the parents know. They can contact me via email if
they are interested. Thank you for your newsletter. I read it front
to back. Hope you had a great success at the October conference.
SAROJ MADAN, M. S.
22 Jennifer Road, Lowell, MA 01854
Tel: 978-452-7007 Fax: 509-691-2640
www.fastlearning.com or www.madantravel.com
It is always good to read new articles in Autism Network. I love
to read the Hindi portion of the journal. It also helps my mother to
read on autism, who only reads Hindi. I am also doing a session of AIT
in Delhi in February. Can you print that in your December issue of Autism
Network?
SHARDA RAMLACKHAN
Boston, Massachusetts, Email: ShardaEARS@aol.com
Announcement: Autism: A Medical Perspective
NATIONAL CONFERENCE ON AUTISM
Venue: India International Centre Annexe, Conference Room 4, Max Mulleur
Road, New Delhi 110 003
Date: 14 December 2001 ~ Time: 8:30 am - 5:00 pm
Action for Autism is pleased to announce the first National Medical
Conference on Autism. AFA routinely organises insightful and practical
workshops, seminars and conferences for parents and educators. Most
previous events have dealt largely with educational aspects.
This Conference will bring together speakers to provide invaluable
information and advice on specific medical matters- often a source of
particular anxiety to carers of autistic children. These include the
presence and treatment of seizures, hyperactivity, and depression and
panic attacks particularly in adults with ASD, as well as obsessional
and aggressive behaviour. What solutions can medicine provide to combat
these problems? The conference promises to be informative and up-to-date,
keeping us abreast of developments in research as they take place internationally.
Of particular interest being the emerging field of Bio-medical treatments.
Topics to be covered include: Pervasive Developmental Disorders, Clinical
Manifestation, Differential Diagnosis, Drug Therapy and Hyperactivity,
Management of Seizures, Biomedical Treatments, Medication and the Adult
with Autism.
RESOURCE PERSONS & SPEAKERS
Dr RK Sabharwal
Spl in Paediatric Neurology and Epilepsy
Holy Family, Aashlok, Apollo
Dr Achal Bhagat
Sr Con Psychiatry and Psychotherapy, Apollo, Saarthak
Dr Narendra Singh
Asst Prof, Dept of Psychiatry, IHBAS
Dr Vibha Krishnamurti
Spl in Dev and Beh Disorders, Mumbai
Jaslok, Lady Ratan Tata C I & R Centre
Dr Zenobia Sharma
Presents on biomedical issues at: NAS, UK & Options, USA
Indu Chaswal
Director Education AFA
Autistic Brothers Lose Firefighter Father in New York City
Maureen Flanning, whose husband, Jack, a New York City fire chief,
is missing, won't even talk to Monsignor Lisante about a funeral or
memorial service. "She's been going to the site and watching from
a distance," said Monsignor Lisante. "She takes it literally
that he's lost. She's not accepted that he's gone." She can't afford
to have him dead. They have two sons, Sean, 13, and Patrick, 5, both
autistic.
Monsignor Jim Lisante, who is pastor for Saint Thomas the Apostle Church
in West Hempstead, New York, lost 26 from his parish in the WTC crash
- Excerpt from NY Times Sunday, September 23, 2001