INTRODUCTION - National Trust

INTRODUCTION
To the National Trust
1. The National Trust is a statutory body under the Ministry of Social Justice &
Empowerment, Government of India, set up under the “National Trust for the Welfare
of Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities”
Act (Act 44 of 1999) :-
2. The basic objects of the National Trust are:-
a) to enable and empower persons with disability to live as independently and as
fully as possible within and as close to the community to which they belong;
b) to strengthen facilities to provide support to persons with disability to live within
their own families;
c) to extend support to registered organizations to provide need based services
during periods of crisis in the family of persons with disability;
d) to deal with problems of persons with disability who do not have family support;
e) to promote measures for the care and protection of persons with disability in
the event of death of their parent or guardian;
f) to evolve procedures for the appointment of guardians and trustees for persons
with disability requiring such protection;
g) to facilitate the realization of equal opportunities, protection of rights and full
participation of persons with disability; and
h) to do any other act which is incidental to the aforesaid objects.
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The Organizational Structure of the Board is :
Chairperson
Standing
Committees
Consultants &
Advisors
BOARD OF TRUSTEES
Chief Executive Officer
Office
Registration Facilitation
Implementation
Administration
Local Level Committees
Registered Organisations
Guardianship Issues Advocacy Awareness Services / Programmes
Information Dissemination Implementation Self Help Groups
The Board seeks to implement its objectives through
1. Registered Organisations
2. Government Departments and Autonomous Bodies
3. Local Level Committees at the District Level
Formulation of Schemes
The two Schemes of the National Trust under the broad Reach & Relief Scheme are
“Establishment of Relief Institutions” for providing institutional care and “Training of
Caregivers” for home-based caregiving services.
Income Tax Exemption
The National Trust gets 100% exemption from the Income Tax as announced by the Finance
Minister in his budget speech.
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List of Information Centres (as on 5th March, 2002)
Sl. State Name of the Institutions Name of Nodal Officer
No.
which will act as Information
Centres
1. Andhra National Institute for Mentally Mrs. Vijayalakshmi Myreddi
Pradesh Handicapped, Manovikasnagar,
Bowenpally, Secunderabad.
Tel.: 7751741, Fax : 040-7750198
e-mail : dirnimh@hd2.vsnl.net.in
2. Assam Shishu Sharothi, Spastics Society Mrs. Ketaki Bardalai
of Assam, Off Ramakrishna Mission
Road, Birubari, Guwahati
Tel.: 0361-470990
e-mail : shishu_sarohi@yahoo.com
3. Bihar JM Institute of Speech & Hearing, Mr. S.P. Kumar
Indrapuri, Keshrinagar, Patna-800024
Tel.: 0612-264805, Fax : 269396
4. Chattisgarh Akaanksha, Lions School for Mentally Mrs. Simi Shrivastava
Handicapped, Lions Den, Jalvihar,
Raipur-492007, Chattisgarh
Tel.: 427468
5. Chandigarh Govt. Institute for Mentally Retarded Mrs. Puja
Children, Sector-32, Chandigarh
6. Delhi National Trust, M/o SJ&E, Govt. of Mr. Samir Kumar
India, IPH Complex, 4, Vishnu
Digamber Marg, New Delhi-110002
Tel.: 3217411-13, Fax : 3214714
e-mail : nationaltrust@nic.in
website : www.nationaltrust.org.in
7. Gujarat Blind People’s Association, Ms. Jyoti Doshi
Dr. Vikram Sarabhai Marg,
Vastrapur, Ahmedabad
Tel.: 6304070, 6303513, Fax 6300106
e-mail : bpa@vsnl.com/
bpaindia@satyam.net-in
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Sl. State Name of the Institutions Name of Nodal Officer
No.
which will act as Information
Centres
8. Haryana Arpan Institute for Mentally Mr. H.R. Dhall
Handicapped Children,
Gandhi Nagar, Rohtak-124001
Tel.: 43817, (R) 45295, 51717
e-mail : arpan_inihca@yahoo.co.in
9. Jharkhand Deepshikha, Arya Samaj Mandir, Mrs. Sudha Lahila
Swami Shradhanand Marg, Ranchi
Tel.: 306203
e-mail : deepshikha@bitsmart.com
10. Kerala Balavikas Institute, Balavikas Building, Mr. Shibu
Gandhi Marg, Opp. Hindustan Latex,
Peroorkada, Thiruvananthapuram
Tel.: 433646, 433328
11. Karnataka Karnataka Parents Association, AMH Mr. A.V.. Varadarajait
Compound, Off Hosur Road, Near
Kidwai Memorial Hospital, Bangalore
Tel.: 5563267, Telefax : 6564608,
e-mail : jpkpamrc@vsnl.net
12. Manipur All Manipur Mentally Handicapped Ch. Gitavali Devi
Person Welfare Organisation
Keishamthong Top, Leirak,
Imphal-795008 Tel.: 223537
13. Maharashtra NIMH-Regional Centre, AYJINHH Mrs. Pranita P. Madkaikar
Campus, K.C. Marg, Bandra West,
Bandra Reclamation, Mumbai
Tel.: 6442880, Fax : 6511664
e-mail : nimhrcm@vsnl.net
14. Madhya Composite Regional Centre for Mr. Ashutosh Pandit
Pradesh Persons with Disabilities, Near
Nutan College, Link Road No. 2,
Shivaji Nagar, Bhopal-462016
Tel.: 0755-578073
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Sl. State Name of the Institutions Name of Nodal Officer
No.
which will act as Information
Centres
15. Meghalaya Dwar Jingkyrmen School for Mrs. Zeenat A Ali
Children in Special Education,
Stonyland, Shillong-793003
Tel.: 0364-221226 e-mail : dwar_
jingkyrmen@hotmail.com
16. Orissa Vikash, D-2/7, Industrial Estate, Mr. Soumen Sarangi
Rasulgarh, Bhubaneswar, Orissa-
751010 Tel.: 0674-582006, 585220
Fax : 581426
e-mail : vikashbbsr@hotmail.com
17. Rajasthan Additional Commissioner (Disabilities) Mr. Y.C. Sharma
Ambedkar Bhawan, Behind Pant
Krishi Bhawan, Bhagwan Dass Road,
Jaipur-302005 Tel.: 0141-383641
18. Tamil Nadu Spastics Society of Tamil Nadu, Ms. Annie Shyam
Opp. TTTI Taramani Road, Chennai
Tel.: 044-2541133, 2541651
Fax : 2541047
e-mail : spastn@vsnl.net.in
19. Tripura All Tripura Scheduled Caste, Tribes Ms. Susmita De
& Minority Upliftment Council,
Ramnagar Road No. 1, P.O.
Rarrmagar, Agartala,
Tripura (W)-799002 Tel.: 0381-208507,
226264 Fax : 300013
20. Uttar Pradesh Uttar Pradesh Parents Association for Mr. S.C. Pant
the Welfare of Mentally Handicapped
Citizens, Lucknow, B-1/42, Sector-K,
Aliganj, Lucknow-226024, UP
Tel.: 364287
21. Uttarakhand Natioanl Institute for Visually Mr. S.S. Chauhan
Handicapped, 116 Rajpur Road,
Dehradun-248001
Tel.: 0135-744491, 748147
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Sl. State Name of the Institutions Name of Nodal Officer
No.
which will act as Information
Centres
22. West Bengal Manovikas Kendra Rehabilitation and Dr. Sharda Fatehpuria,
Research Institute for the
Handicapped, 482, Madhudah
Plot-24, Sec-J, Eastern Metropolitan
Bypass, Kolkata-4423305/3306/8275
Fax : 033-4428275
e-mail mvkendra@cal2.vsnl.net.in
List of Other Publications
S. No. Publications
1. National Trust Act & Rules
2. Issue Related to Guardianship*
3. How to Identify Persons with Autism, CP, MR & MD*
4. Hand Book of Information*
5. Cerebral Palsy*
6. Preventive Measures*
7. Role & Guidelines of LLC*
8. For A Secure Tomorrow
9. Mental Retardation*
10. Multiple Disabilities
11. Profile of Needs of Persons with Disabilities
12. Scheme
13. What Can We Do to Ensure the Rights of Disabled People
14. Screener
15. Poster - Inclusive Education
16. Poster - Early Detection*
17. Training of Care Givers
*These publications are available in 13 Regional Languages. Others are available in Hindi & English.
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INTRODUCTION
Fifty years ago Dr. Leo Kanner, a psychiatrist at Johns Hopkins University, wrote the first
paper applying the term ‘autism’ to a group of children who were self-absorbed and who
had severe social, communication, and behavioral problems.
Prevalence :
For many years, the most cited statistics is that autism occurs in 4.5 out of 10,000 live
births. This was based on large-scale surveys conducted in the United States and England.
More recently, estimates on the prevalence of autism have been as high as 1/4% to 1/2%
of the population. Autism is three times more likely to affect males than females.
Major Characteristics :
Many autistic infants are different from birth. Two common characteristics they may exhibit
include arching their back away from their caregiver to avoid physical contact and failing
to anticipate being picked up (i.e., becoming limp). As infants, they are often described as
either passive or overly agitated babies. A passive baby refers to one who is quiet most of
the time making little, if any, demands during his/her waking hours. During infancy,
many begin to rock and/or bang their head against the crib; but this is not always the case.
In the first few years of life, some autistic toddlers reach developmental milestones, such
as talking, crawling, and walking, much earlier than the average child; whereas others are
considerably delayed. Approximately one-half of autistic children develop normally until
somewhere between 1 1/2 to 3 years of age; then autistic symptoms begin to emerge.
These individuals are often referred to as having ‘regressive’ autism. Some people in the
field believe that canadida albicans, vaccinations, exposure to a virus, or the onset of seizures
may be responsible for this regression. During childhood, autistic children may fall behind
their same-aged peers in the areas of communication, social skills, and cognition. In addition,
dysfunctional behaviors may start to appear, such as self-stimulatory behaviours (i.e.,
repetitive, non-goal directed behavior, such as rocking, hand-flapping), self-injury (e.g.,
hand-biting, head-banging), sleeping and eating problems, poor eye contact, insensitivity
to pain, hyper-/hypo-activity, and attention deficits.
One characteristic which is quite common in autism is the individual’s insistence on
sameness’ or ‘perseverative’ behavior. Many children become overly insistent on routine;
if one is changed, even slightly, the child may become upset and throw tantrums. Some
common examples are: drinking and/or eating the same food items at every meal, wearing
certain clothing or insisting that others wear the same clothes, and going to school using
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the same route. One possible reason for ‘insistence on sameness’ may be the person’s
inability to understand and cope with novel situations.
Autistic individuals sometimes have difficulty with the transition to puberty.
Approximately 25% have seizures for the first time during puberty which may be due to
hormonal changes. In addition, many behavior problems can become more frequent and
more severe during this period. However, others experience puberty with relative ease.
In adulthood, some people with autism live at home with their parents; some live in
residential facilities; some live semi independently (such as in a group homes) and others
live independently. There are autistic adults who graduate from college and receive
graduate degrees; and some develop adult relationships and may marry. In the work
environment, many autistic adults can be reliable and conscientious workers. Unfortunately,
these individuals may have difficulty getting a job. Since many of them are socially awkward
and may appear to be ‘eccentric’ or ‘different’, they often have difficulty with the job
interview.
Social Disorders :
There is no single adjective which can be used to describe every type of person with autism
because there are many forms of this disorder. For example, some individuals are antisocial,
some are asocial, and others are social. Some are aggressive toward themselves
and/or aggressive toward others. Approximately half have little or no language, some
repeat (or echo) words and/or phrases, and others may have normal language skills. Since
there are no physiological tests at this time to determine whether a person has autism, the
diagnosis of autism is given when an individual displays a number of characteristic
behaviors.
One form of autism is characterized by concrete and literal thinking, obsession with certain
topics, excellent memories, and being ‘eccentric’ These individuals are considered highfunctioning
and are capable of holding a job and of living independently.
Causes :
Although there is no known unique cause of autism, there is growing evidence that autism
can be caused by a variety of problems. There is some indication of a genetic influence in
autism. Currently, a great deal of research has focused on locating the ‘autism gene;’
however, many researchers speculate that three to five genes will likely be associated with
autism. There is also evidence that the genetic link to autism may be a weekend or
compromised immune system. Other research has shown that depression and/or dyslexia
are quite common in one or both sides of the family when autism is present.
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There is also evidence that a virus can cause autism. There is an increased risk in having an
autistic child after exposure to rubella during the first trimester of the pregnancy.
Cytomegalo virus has also been associated with autism. Additionally, there is also a growing
concern that viruses associated with vaccinations, such as the measles component of the
MMR vaccine and the pertussis Component of the DPT shot, may cause autism.
There is growing concern that toxins and pollution in the environment can also lead to
autism.
Physical abnormalities :
Researchers have located several brain abnormalities in individuals with autism; however,
the reasons for these abnormalities is not known nor is the influence they have on behavior.
These abnormalities can be classified into two types-dysfunctions in the neural structure
of the brain and abnormal biochemistry of the brain.
A dysfunctional immune system has also been associated with autism. It is thought that a
viral infection or an environmental toxin may be responsible for damaging the immune
system. As mentioned above, there is also evidence of a genetic association to a
compromised immune system. There is growing evidence that the gut or intestinal tract of
autistic children is impaired.
Sensory impairments :
Many autistic individuals seem to have an impairment in one or more of their senses. This
impairment can involve the auditory, visual, tactile, taste, vestibular, olfactory (smell),
and proprioceptive senses. These senses may be hypersensitive, hyposensitive, or may
result in the person experiencing interference such as in the case of tinnitus, (a persistent
ringing or buzzing in the ears). As a result, it may be difficult for individuals with autism
to process incoming sensory information properly.
Sensory impairments may also make it difficult for the individual to withstand normal
stimulation. For example, some autistic individuals are tactilely defensive and avoid all
forms of body contact. Others, in contrast, have little or no tactile or pain sensitivity.
Furthermore, some people with autism seem to ‘crave’ deep pressure. Another example of
sensory abnormalities is hypersensitive hearing. Approximately 40% of autistic individuals
experience discomfort when exposed to certain sounds or frequencies. These individuals
often cover their ears and/or throw tantrums after hearing sounds such as a baby’s cry or
the sound of a motor. In contrast, some parents suspect their children of being deaf because
they appear unresponsive to sounds.
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Cognition :
“Theory of mind” refers to one’s inability to realize that other people have their own unique
point of view about the world. Many autistic individuals do not realize that people may
have different thoughts, plans, and perspectives other than their own. For example, a child
may be asked to show a photograph of an animal to another child. Rather than turning the
picture around to face the other child, the autistic child may, instead, show the back of the
photograph. In this example, the autistic child can view the picture but does not realize
that the other child has a different perspective or point of view.
About 10% of autistic individuals have savant skills. This refers to an ability which is
considered remarkable by most standards. These skills are often spatial in nature, such as
special talents in music and art. Another common savant skill is mathematical ability in
which some autistic individuals can multiply large numbers in their head within a short
period of time; others can determine the day of the week when given a specific date in
history or memorize complete airline schedules.
Many autistic individuals also have a narrow or focused attention span; Basically, attention
is focused on only one, often irrelevant, aspect of an object. For example, they may focus
on the color of an utensil, and ignore other aspects such as the shape. In this case, it may be
difficult for a child to discriminate between a fork and a spoon if he/she attends only to
the color. Since attention is the first stage in processing information, failure to attend to the
relevant aspects of an object or person may limit one’s ability to learn about objects and
people in one’s environment.
Interventions :
Over the years, families have tried various types of traditional and nontraditional treatments
to reduce autistic behaviors and to increase appropriate behaviors. Although some
individuals are given medications to improve general well-being, there is no primary drug
which has been shown to be consistently effective in treating symptoms of autism.
The two treatments which have received the most empirical support are Applied Behavior
Analysis (ABA; behavior modification) and the use of vitamin B6 with magnesium
supplements. Behavior modification involves a variety of strategies, (e.g., positive
reinforcement, time-out), to increase appropriate behaviors, such as communication and
social behavior, and to decrease inappropriate behaviors, such as self-stimulatory and selfinjurious
behavior.
Vitamin B6 taken with magnesium has been shown to increase general well-being,
awareness and attention in approximately 45% of autistic children. There are also a number
of recent reports about the benefits of another nutritional supplement, Dimethylglycine
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(DMG). DMG also seems to help the person’s general well-being, and there are many
anecdotal reports of it enhancing communication skills.
Some people with autism have excessive amounts of a type of yeast called ‘candida albicans’
in their intestinal tract. It is thought that high levels of candida albicans may be a contributing
factor to many of their behavioral problems. Excessive candida albicans can be treated
with rather mild medications such as Nystatin.
Food intolerances and food sensitivities are beginning to receive much attention as possible
contributors to autistic behaviors. Many families have observed rather dramatic changes
after removing certain food items from their children’s diet. Researchers have recently
detected the presence of abnormal peptides in the urine of autistic individuals. Many parents
have removed wheat and milk from their children’s diets and have, in many cases, observed
dramatic, positive changes in health and behavior.
As mentioned earlier, many autistic individuals have sensory impairments. Sensory
integration techniques are often used to treat dysfunctional tactile, vestibular, and
proprioceptive senses. Some of the techniques involve swinging a child on a swing in
various ways to help normalize the vestibular sense and rubbing different textures on the
skin to normalize the tactile sense. In addition, an autistic woman, Dr. Temple Grandin,
developed a hug machine which provides the individuals with deep pressure which appears
to have a calming effect on the person.
Many autistic individuals are also sensitive to sounds in their environment. They may
hear sounds beyond the normal range and/or certain sounds may be perceived as painful.
Auditory integration training, (listening to processed music for ten hours), is an intervention
which is often used to reduce these sensitivities. Visual training is another sensory
intervention designed to normalize one’s vision. There are several methods of visual
training. One popular program, developed by Dr. Melvin Kaplan, involves wearing ambient
(prism) lenses and performing movement exercises which appear to reorganize and
normalize the visual system.
Conclusion :
Autism is a very complex disorder; and the needs of these individuals vary greatly. After
50 years of research, traditional and contemporary approaches are enabling us to
understand and help these individuals. It is also important to mention that parents and
professionals are beginning to realize that the symptoms of autism are treatable-there are
many interventions that can make a significant difference.
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FACTS ABOUT AUTISM
• People with Autism are not physically disabled and ‘look’ just like anybody without
the disability. Due to this invisible nature of the disability it is much harder to create
awareness and understanding about the condition. Since a child with Autism looks
‘normal’, others assume they are naughty or that the parents are not controlling the
child. However, no known factors in the psychological environment of a child have
shown to cause Autism. Earlier myths that Autism is a mental illness or that Autism
is caused by “bad parenting” have been proved false.
• Autism is a lifelong developmental disability that appears in the first three years of
life. It interferes with the development of language, intuitive thought, repertoire
interests and social interaction. Speech and language may develop slowly or
abnormally. A large number of children with Autism remain unable to communicate
their needs through spoken words. Often they prefer to be alone. They may also be
over or under sensitive to sensory inputs such as touch, sound, and light. Repetitive
behavior patterns are a notable feature and they sometimes show resistance to change
in routine. Many suffer from hyperactivity, self-injurious behaviors, sleeplessness
and eating disorders.
• Autism is often referred to as a spectrum disorder as the symptoms can present
themselves in a wide variety of combinations ranging from mild to severe. Two
children diagnosed with Autism can act very differently. There is also a condition
called Aspergers syndrome, which is a form of Autism used to describe people at the
higher functioning end of the Autistic spectrum.
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MAJOR CHARACTERISTICS
Autistic disturbance is generally considered to include some combination of the following
symptoms:
1. Autistic children exhibit a profound failure to relate to other people, which is often
apparent from birth. They may show delayed social smile and in many cases smile is
absent. They may not reach upwards in anticipation of being picked up. Some children
fail to form emotional attachments to significant people in their environment. For
example, they show no distress when their mother leaves the room. Similarly, a child
might play in the vicinity of other children without interacting or participating with
them.
2. Autistic children commonly show various levels of impaired or delayed language
acquisition and comprehension. Some autistic children are non-verbal and others
may exhibit echolalia. For example, a child may repeat numerous phrases or
conversations previously heard without indication that the words convey meaning.
Immature grammar, pronoun reversal, and/or the inability to use abstract terms
may also be apparent.
3. Many autistic children show apparent sensory dysfunction, as if they do not see or
hear some environmental events. They may exhibit under-or over-responsiveness to
touch, sound or pain. For instance, the child may not exhibit a startle response to a
loud disturbance but may respond to the sound of a candy wrapper, or may tantrum
excessively every time a siren goes by.
4. Many children with autism show inappropriate and/or flat affect. They may not
display appropriate facial expressions and may not exhibit fear in dangerous
situations, such as crossing the street. They may respond to even simple requests
with severe, prolonged tantrums. They may also laugh and giggle uncontrollably in
absence of any apparent eliciting stimuli or cry inconsolably for hours.
5. Typically, autistic children will occupy themselves for hours in stereotyped, repetitive
self-stimulatory behaviours, which serve no apparent purpose other than providing
the child with sensory input. Commonly, self-stimulatory behaviours take the form
of manipulation of hands or fingers in front of the eyes, eye crossing, repetitive
meaningless vocalization (e.g., “aeh, aeh aeh...”) suspending or spinning objects in
front of the eyes, mouthing objects, hand tapping, body rocking, and other
stereotypical behaviour. Such behaviours have been found to significantly impair
learning in autistic children (Koegel & Covert, 1972 cited in Johnson & Koegel, 1982).
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6. Children with autism often fail to develop normal appropriate play. They may forsake,
toys altogether, preferring instead to spin a lampshade or flick a light switch on and
off. If they do interact with toys, they may do so in an abnormal manner. For instance,
the child may arrange, stack, or sort stimuli repetitively, over and over in the same
pattern, and may show extreme disruption if the pattern is altered. Or they may turn
a truck over and spin the wheels rather than roll it on the ground. Social play with
peers may develop spontaneously, but usually does not.
7. Finally, autistic children commonly show obsessive, ritualistic behaviours which have
been characterized as a profound resistance to change in the environment or to normal
routines. Familiar bedtime routines, insistence on one type of food, one type of
furniture arrangement and particular routes to familiar places are examples of routines
which, when altered even in a minor fashion, can create extreme disruptions in a
child’s behaviour.
In short, the characteristics are :-
People with autism fail to develop interpersonal relationships.
They show gross impairment in communication ability. Approximately 50 % of
children do not develop meaningful verbal language.
They exhibit bizarre responses to various environmental stimuli like light, sound,
touch, and pain.
They indulge in stereotypical, self stimulatory, repetitive behaviours, like body
rocking, hand-flapping, and meaningless vocalisations.
They have abnormal play patterns.
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FREQUENTLY ASKED QUESTIONS
1. What is autism?
Autism is a severely incapacitating lifelong developmental disability that typically
appears in the first three years of life. It is the result of a neurological disorder that
affects functioning of the brain. Autism and its behavioral symptoms occur in
approximately 2-4 per 10,000 births. Autism is four times more common in boys than
in girls. It has been found throughout the world, in families of all racial, ethnic and
social backgrounds. There are no known factors in the psychological environment of
the child that can cause autism.
2. How is autism diagnosed?
There are no medical tests for autism. Autism is diagnosed by the presence or absence
of certain behaviours both by history and examination. As noted, a child must exhibit
behaviours in four areas. The first area is the way a child develops. For example in
the first year of life a normal child learns to walk, talk and interact with you, so that
by the end of the first year you have a “little person” on your hands. A child who is
slow, learns those skills, but learns them at a slower rate. A child with autism has
very inconsistent development. He/She may start to develop normally and then seem
to stop; may start to talk and stop, may have very good motor skills or be very good
in some areas and very poor in others. It is this inconsistency development that is
important in making the diagnosis of autism.
3. What causes autism?
AT THIS POINT WE DO NOT KNOW WHAT CAUSES AUTISM. However, current
research indicates that anything that can produce structural or functional damage in
the central nervous system can also produce the syndrome of autism. We know that
certain viruses and known genetic conditions have been associated with autism
addition. In addition, in rare cases there may be more than one autistic child in the
family. At this point, it is believed that about ten percent of cases of autism can be
accounted for genetically. Generally no one can tell why the child is autistic.
4. What is the treatment for autism?
As of today the best treatment for autism is to impart to the autistic children a
structured education and training so as to eventually make them self-reliant and
suitably rehabilitated to live an independent life with as little help as possible. Research
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has demonstrated quite clearly that autistic children benefit by attending school daily
only if the schools have highly structured, skill oriented training curriculum tailored
to the individual. Autistic children need purposeful, carefully planned and executed
teaching if they are to learn at the rate that is optimum for them. Unstructured
education and training does not help and it merely delays the benefit to be derived
from a structured education and training.
All that is required is to enable them to utilize to the fullest their intellectual potential
and capabilities. They can be made to contribute to society to the best of their abilities
and potential. To consider them as useless citizens of the society is extremely harmful
both to them and to ourselves. We must support them and give them a helping hand
to make them self-reliant and live with dignity. It is not easy but not impossible to
achieve. The qualifications needed on our part are dedication, devotion, sacrifice,
determination and commitment to create the facilities to impart them the necessary
training to stand on their feet & to adapt to the demands of life.
5. What is the difference between autism and mental retardation?
Most people with mental retardation show a relatively even rate of skill development
even if it is at a lower than the normal range. While individuals with autism typically
show uneven skill development with deficits in certain areas especially in their ability
to communicate and relate to others. They may have special skill in other areas.
It is necessary to distinguish between Autism and Mental retardation for proper
educational training and, effective diagnosis.
6. What can parents / teachers of children with autism do?
The most important thing parents and teachers dealing with persons with autism
can do is to educate themselves about the disorder and become an advocate for the
child and family. It is important to identify a professional who can help them through
the system initially. Parents and teachers must work together closely. It is also critical
to meet other parents of people with autism. Other parents & teachers can share
experiences on how to handle certain problems that may arise for the child and the
family. Finally, it is most important that you love your child. Treat him / her as
normally as possible. It is important to help you understand what is wrong with
your child; and it is important to help you get the services he/she needs. The more
normally a person with autism is treated the better he/she is going to do. While it is
important to recognize that while treating a child normally is the ideal, it may take
the child with autism longer to learn the things necessary to function independently
in society as an adult. However, with love, early intervention and education, people
with autism can and do lead happy productive lives and can be integrated into society.
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The problem is that society is not always tolerant of persons who are different. It is
up to us as parents and professionals to educate society and help them understand
and appreciate autism.
7. Can the child ever live an independent life ?
Autism is a spectrum disorder. Currently there is no reliable and objective measure
of how severe the Autism is in an individual child. Children with Autism do have
potential for building up their skills and they can be helped if they receive early,
well-focussed intervention. Depending on the child’s individual skill profile and the
appropriateness and intensity of intervention they receive, children with Autism can
lead relatively independent lives.
8. Is there a cure ?
At this point we do not know what causes Autism and so cannot fix (cure) what is
wrong in the child’s brain. Many interventions (medications, diets, etc.) are being
tried but nothing is proven. The only thing that is found to help in all cases is ail
appropriate training program that is very specific to the child’s needs. It is a life long
condition but with appropriate intervention (training methods) the child can progress
to his fullest potential.
9. What are the chances of her going to a regular school ?
There are a number of autistic children who have integrated into regular schools.
The chances depend on several factors. The most important is - “What is the skill
profile, how early was the diagnosis made and thereafter what kind of early
intervention was provided?” Most children with Autism have different learning styles
from regular children and therefore teaching styles also need to be different. In some
schools this is not understood and therefore children with Autism face difficulties.
10. Will my child ever speak, if so, when ?
A large number of autistic children (about 30-50%) do not use speech. It is very difficult
to say when and whether the child will ever speak. It is confirmed that there is no
difficulty in their oral mechanism that prevents them from speaking. Some who may
have spoken as infants and have subsequently lost their speech, may or may not get
their speech back. They do not speak for reasons as yet unclear. Experience with
children with autism has shown that if the environment is accepting, and people are
aware of the kind of speech they themselves need to use with the child, it can produce
positive results.
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11. Can Speech Therapy help ?
Speech Therapy can help some children. It is absolutely essential for the speech
therapist to understand Autism in general and also the individual child. Otherwise,
the conventional methods of speech therapy do not help children with Autism.
However, every child with autism can benefit from communication therapy,
12. Why is he hyperactive ?
Hyperactivity can have a medical reason. However, most children with Autism are
restless because of an impairment in their cognitive, communicative and social skills.
They cannot play with their toys and with other children meaningfully and fin it
very difficult to occupy themselves. Often they eat a lot to keep themselves occupied.
Eating junk food (chips, chocolates and aerated soft drinks with preservatives) can
also increase hyperactivity. Hyperactivity can be reduce as the children are taught
new skills and ways to keep themselves occupied.
13. What are chances of Autism in the next child born to us? Can we have a normal
child ?
About 10% of the cases of Autism can be accounted for genetically. If there is one
child with Autism in the family, risks of having another child with autism is much
higher than in the general population. So far, there is no reliable test to detect Autism
in the foetus.
14. Why does he keep playing with his fingers/rocking himself back and forth/spinning
around etc.?
Children with Autism respond to sensations in ways which are different from that of
others. They have a contrition known as sensory dysfunction - this means either over
or under stimulation in any one or more of the sensory modalities (hearing, sight,
taste, touch, smell, balance). These unusual mannerisms like flapping and rocking
etc. are for them natural responses or methods of coping with sensory difficulties.
These behaviours sometimes help them to relax.
15. Is the child’s own home a better option for him, or is a hostel better ?
It is now increasingly accepted that during the early years of development, it is
important for an autistic child to live and grow in a home environment. As the child
grows up, he can be trained to live in a group home but it is very important for the
autistic people living in such homes also to integrate with society in general and not
just be abandoned in a home or hostel.
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16. Can they get married and have regular children ?
The essence of marriage is companionship. It is an union between two consenting
adults and it involves adjustment and carrying on day-to-day responsibilities of life.
It also involves an ability to plan for the future etc. Before deciding to marry an
autistic person, the following things need to be considered :
The level of functioning of the person.
That the partner understands the needs of, and that he or she knows everything
about, the autistic spouse (if one of them is not autistic).
Financial status (employment, family support etc.)
However, since marriage is an issue of social commitment and companionship, by
the very nature of the condition many able people with autism choose not to marry.
17. Are people with Autism also mentally retarded ?
It is very difficult for people with autism to take an IQ test because they may have
certain skills but are not able to use them or exhibit them in a test. It is said that about
50% of people with autism are also mentally retarded, in the same way that people
with Cerebral Palsy can have mental retardation. Autism can occur in association
with other difficulties like Cerebral Palsy, Dyslexia, Downs Syndrome, Visual
Impairment, Hearing Impairment and Seizure Disorders.
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A PHYSICIAN’S GUIDE FOR PARENTS
OF CHILDREN WITH AUTISM
”AUSTISIC SPECTRUM DISORDERS”
You have been worried about your child for a long time, but it has been difficult to
describe “the difference” from other children; probably some people have told you not to
worry, others have been unable to decide just what was going on, and now you have been
told there is an “autistic spectrum disorder”. What does this mean?
Children diagnosed as having an autistic spectrum disorder (ranging from the most
severe form, early infantile autism or Kanner syndrome through to much milder types of
pervasive developmental disorder (“P.D.D.”) and Asperger syndrome) are all as different
from each other as neurologically intact children without such difficulties. Yet all have
real problems in communication and relating to other people, and all show unusual
behaviours, with odd habits and mannerisms. These problems will have been present before
the third birthday, and often parents will have sensed something “different” in the first
year of life. These children have severe difficulties in all of these areas. Some of these children
are very intelligent, others are mentally retarded; in young children it can be extremely
hard to judge or measure intelligence, and intelligence testing is not usually reliable (in
terms of forecasting the future) before the child is five or six years old.
1. What is the cause of autistic spectrum disorder ?
No single cause is known. There are probably many different causes. What seems to
be one disorder will someday turn out to be a group of quite different conditions all
producing the same symptoms. This is very common in medicine - thus there are
many different causes of cough, or arthritis, or anxiety.
All autistic spectrum disorders are due to some change in the way the brain works.
They are never, caused by poor parenting. If you meet professionals who blame you
for your child’s difficulties, have nothing further to do with them.
We know that there is a genetic influence in many cases of autism – it can run in
families -some parents have more than one child with autism or PDD. However,
other cases are clearly not genetic. In some genetic conditions - such as “fragile-X
syndrome” and tuberous sclerosis some of the children do have autism.
Some children have different brains; either they are made differently or something has
gone wrong with brain growth early in pregnancy, a variety of abnormalities have
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een found at autopsy or by magnetic resonance neuro-imaging (MRI), but there is
no pattern that shows up in all cases. Parts of the brain in which differences can be
found include the cerebellum, the limbic systems and almost any other part studied.
Most brains look quite normal. Autism cannot be diagnosed from MRI. Some brains
work differently (and radio-active tests such as the PET-scan, or SPECT, may suggest
that one or other part of the brain is working too hard or not hard enough, or is
receiving too much or too little blood-flow. Although these findings are very interesting
they rarely help us to help the child, but they do remind us that autism is a serious
disorder of the brain.
The brain “works” by producing chemicals called “neuro-transmitters” - the
proportions of these in different parts of the brain affects how we - or our brains –
respond to what is going on around us, or how we behave and think. We know many
disorders are due to abnormal brain biochemistry, and some of these may cause autism.
There is a lot of research into the biochemistry of the brain in autism but no pattern of
abnormality has yet been found in all children.
Some parents and experts believe many cases of autism are due to disturbances in
the regulation of immune materials - antibodies - in the brain. There are certainly
close links between parts of the brain most often involved in autism – the limbic
system- and the immune systems of the body, and there are some suggestive but as
yet quite unproven theories. In a few cases brain infections with viruses like rubella
have been responsible for autism. Some parents blame immunisation- but the evidence
is very weak, and it is much more dangerous for a child not to be immunised against
the common virus diseases. Some people strongly believe autism is caused by yeast
infections - but yeast infections are very common in children who are not autistic,
and the theories and evidence are poor.
We do not know the cause of autism in most cases. We should look for treatures
causes in every child. We must encourage more research. We must all remain open
minded.
2. What are children with autistic spectrum disorder like ?
Again, they are all different, all individuals. Few will show all of the possible features,
and some may be quite mild and not obvious. The intensity and number of these
curious ways of behaving often gets better, or changes as they get older.
Their communication problems will generally include a severe delay in developing
speech, with failure to understand speech at the level expected for their Also, they
will have great difficulties with “non-verbal” language, failing to understand simple
gestures, for example they may not recognise your outstretched arms as a signal to
run to you for a hug. Even facial expressions may be difficult for them to read, so
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they may not realise if you are angry or happy. They rarely even use activities like
pointing, showing, and getting things to share their interests with others.
When they talk, their spoken language is odd. They may be talkative or very quite;
what they say tends to relate to their own needs, asking for things, or asking only
about the things they are interested in, and they will rarely use speech to ask about
other people. They may just repeat a few phrases, or they may repeat what has just
been said (“immediate echolalia”) or even a phrase that they heard yesterday As
they learn to talk they may make mistakes of a sort that other children hardly ever
make, such as getting pronouns reversed (using “you” to talk about themselves) or
inventing their own words. They may go on making mistakes long after other children
have learnt perfect grammar. Often they talk monotonously, but they may put the
emphasis on the wrong word in a sentence, or talk too loud or soft. Often they seem
to have no desire to communicate.
Rather similar communication problems can be found in other children, those with
developmental language disorders or learning disabilities, but the difficulties autistic
children have relating to other people are quite unusual. They are not just “shy”; it is
not just that they prefer their own company. Severely autistic children do not seem to
know that other people are people like them at all -they may treat them just the same
way as they treat the furniture! It is not surprising, they have real difficulties forming
social relationships and friendships; sometimes they do not even relate to their parents.
As babies, they may never have enjoyed being held and it may have been impossible
to comfort them. They may never responded to their mother smile by smiling back,
although they may have smiled when tickled or played with. While most babies start
to “talk back ,” you when you coo at them by eight weeks of age, many autistic or
PDD babies never learn this until much later, and they have great difficulties with
the normal “to and fro” of conversation, not knowing when its their turn, interrupting,
or just talking to themselves. They will not learn to “catch your eye” and many actually
try to avoid eye contact, or seem to find a direct gaze almost painful. They learn to
imitate much later than other children, not just smiles bill “funny faces” and “rude
noises” that most kids enjoy and copy by eight or months.
In the pre-school years they seem to lack interest in other children- often they are
described as “aloof” or “remote”. They are usually unable to understand or respond
to the feelings of others, so they will not get upset by a crying child or offer comfort,
to a brother in pain; this is described as “lack of empathy”. They will probably not
show much pleasure when they see you again after a separation, and may not anger
either when you have been away too long. They often do not want to share their
enjoyment or interests.
The very odd behaviours shown by children with autistic spectrum disorders can be
the most difficult to understand, and some parents and professionals find them most
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distressing part of the whole problem. Some treatment programs work very hard on
eliminating these behaviours rather than trying to help the child’s communication
and social skills. Again, they may be quite mild or they can come to dominate
everything the child does; not all children will show all of these behaviours, but all
children with autistic spectrum disorders will to some degree show tendencies to
repeat the same action time after time, to develop odd mannerisms or habits, to react
in unusual ways to sights, sounds, or touch, and to have very restricted and often
unusual interests or obsessions.
These odd behaviours may give us clues as to what it is like to be autistic. The play of
children provides insight into their minds. By eighteen months, most children are
playing imaginatively with dolls and teddy-bears, feeding them and dressing them;
the autistic child may never develop this capacity to use imagination, or it may take
years to emerge, or may be restricted to a very few repetitive patterns. Imaginative
play tells us the child is able mentally to let one thing “stand for” symbolise another
-to see relationships: between self and others, recognising that one is a person like
other people. It tells us that the child has been able to get the meaning out of what is
going on - that actions are being understood, not just observed.
One can use the relationship between a sound or word and the object to which it
refers to develop a vocabulary: one sees a parent say spoon as she puts the spoon in
ones mouth, and eventually the relationship between the sound “spoon” and the
object “sinks in” and eventually one learns to say “spoon”. Forming any type of
relationship or symbolising seems very difficult for autistic children, the of others
must be even harder for them to understand than it is for us to theirs, and because
they are children and lack any ability to control their situation they seem to find
much adult behaviour ‘very frightening indeed.
These children seem to have difficulties with what they see and what they hear, and
often with their other senses too. They seem to have difficulty with their volume
control” -they can’t “switch off” their senses the way most of us can. They seem to
have difficulties in the way they “focus” their vision -not in being long or shortsighted,
but in using “peripheral vision” (the parts of the eye we use for fast moving
objects, distance and things we are not really concentrating or “focused” on for things
they are interested in which are very close to them so they often seem to “peer
sideways” rather than directly -this inlay be I responsible for their “gaze avoidance”
and for the frequent habit of “flicking” their fingers in front of their eyes, which is
normal at around four months of age and is also seen in older children with visual
impairments. For the reason they may be much more interested in parts of things
than in the whole thing; also they often seem mentally unable to build relationships
between , and wholes. They may never “see the wood for the trees” -they never get
past the visual details to understand the essential picture -they see a million individual
leaves rather than a single tree. So we may see them peering repeatedly, obviously
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fascinated, at the tip of a hammer and never using it as a hammer; bright, round,
spinning objects are a frequent source of fascination too. They may become obsessed
with unusual sensations - enjoying tastes or textures that unpleasant. Sometimes this
applies even to painful sensations, biting or slapping themselves. They often seem
extremely distressed by their sensations -a loud noise makes them cover their ears,
scream in terror, or have a major panic attack. A bright light may have the same
effect. The wrong sort of “touch” or “taste” may trigger the, same response. For some
children the intensity of a sensation may not need to be very great - the sound that
overcomes them may not have to be very loud, or may be of a certain pitch or rhythm
- so the child seems to be suddenly acting crazy for no obvious reason,
Spinning objects are a frequent source of fascination, but children with these, disorders
very often develop extremely strong interests in other unlikely objects or areas
depending upon their age and intelligence. They may seem obsessed with “garbage”
or “the date” or “shoes-laces” or “the seven times table”. It can be almost impossible
to stop them showing these interests, or moving them on to something else. Almost
all such children have a great difficulty accepting or dealing with change –they need
very strict routines, and can be severely distressed for a long time if even a very
slight part of the days routine is changed. As well as “obsessions” and the need for
sameness, they may show “compulsions” - they just “liave” to perform a particular
act (“touch the door handle three times whenever they see it” or must do a special
order (“left sock on before right”) and become extremely distressed if their expected
routine is not observed.
3. Who can make the diagnosis of an autistic spectrum disorder ?
While many professionals and others might suspect your child is autistic or has another
pervasive developmental disorder, only a physician or a registered psychologist
can make the diagnosis by law. Even within these groups, only professionals with
appropriate training and experience should diagnose these conditions. Among
physicians, these are likely to be either a child psychiatrist or a developmental,
behavioural paediatrician.
Particularly in mild cases, or with very young children, a wise or professional may
have to express some doubt, and will want to “wait and see” what happens over
time. Remember each child is different and there is no absolute test for these conditions.
4. Will any “tests” be ordered ?
Any young child suspected of having early infantile autism or a severe pervasive
developmental disorder should have some medical investigations to try to identify
of the symptoms, since sometimes these same symptoms or behaviours can be caused
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y a number of conditions which affect the brain, some of which may be medically
treatable, or may be inherited and therefore preventable in later generations.
Often these tests will have been ordered by the family physician or paediatrician
before you see the specialist for the diagnosis of autistic spectrum disorder. Similar
tests are necessary whenever any child’s mental development or ability to
communicate is seriously behind others of his age, even if the behaviour is quite
normal. It will be important to exclude any “progressive”- condition, that is a disorder
which will get steadily worse, and if this is suspected your child may be seen by a
paediatric neurologist.
The most common tests will include a hearing test, an electro-encephalogram (“E.E.G.”
“brain wave test”), a picture of the brain (“M.R.I.” or magnetic resonance imaging),
and some blood and urine tests to exclude treatable and inheritable biochemical
disorders, sometimes called a “metabolic screen”. Often chromosome or genetic testing
may be suggested.
The milder the autistic symptoms and behaviors, and the closer the development of
the child is to normal, the less likely we are to find a medical cause and the less need
there is to do any tests or investigations. If an autistic spectrum disorder is first
suspected in a school child whose development has not been slow probably no
investigations need be done.
Even when we investigate severely autistic children extensively, doing many different
tests, we may not be able to find anything abnormal. The best way of knowing there
is something wrong is to watch the child!
5. If it isn’t autism, what else can it be ?
This is what physicians call the “differential diagnosis”. It can be easy or very difficult;
often we will try to provide the best possible treatment for the worst possibility, and
then time will show us the true diagnosis.
Early infantile autism (Kanner syndrome) is the most severe, and most obvious, form
of autistic spectrum disorder; it is one of the pervasive developmental disorders (PDD).
The term pervasive developmental disorder – not otherwise specified (“PDDNOS”) is used
describe children who do not show all of the usual symptoms, or whose symptoms
are not as severe -in the past they have been described as having “high functioning”
or “atypical” autism. Children with the communication and socialisation difficulties
but few of the behavioural problems of autism, are often diagnosed with Asperger
Disorder. There is a small group of children who seem to communicate better through
written than spoken language, and may learn to read very early; some parents through
experts believe these hyperlexic children are different from others with PDD, but seem
25

to have a great deal in common. The lines between these different condition, or
behavioural syndromes are not very clearly drawn, and particularly in the early years
a child may seem to move from one grouping to another.
Many moderately to severely mentally retarded children will show many “autistic”,
behaviours, but their main problem is their retardation; under-stimulated children,
especially those with visual problems, may seem autistic, and children who do not
process information from their eyes or their ears (“deaf-blind”) often seem very autistic
until they are carefully assessed.
Some learning disabled (“LD”) children, especially those with right brain or “nonverbal
learning difficulties”, may resemble children with Aspergers syndrome, and
children with a failure in the social use of conversation and vocabulary (“semanticpragmatic”
language disorder) may also be confused with PDD - or may have a
particular type of PDD. Some children may show autistic behaviour with
unrecognized continuous seizures, and there is a rare combination of loss of previously
acquired normal language accompanied by seizures (Landau-Kleffner syndrome)
which can sometimes produce autistic-like symptoms. Autistic behaviours can be
seen in any child who is receiving extremely inappropriate stimulation -too much,
too little - for any reason.
Your physician will consider all these possibilities during the process of making a
diagnosis.
I understand about “diagnosis”, but what about ‘assessment” - what is it, who will
do it and where and when will I meet them?
“Assessment” is really the process of learning about your children “assets” – what he
is good at, how his strengths can best be used, what his odd behaviours mean, what
are the things he finds most difficult, and at what sort of developmental level he is
now functioning, and using this information to plan a “management program” or
“intervention”.
You know a lot of this already, so you are the most important person in the assessment
process. Many professionals may be helpful in this process of observing and trying
to understand your child. In addition to a physician and a psychologist, the team
should include a speech- language pathologist, early childhood special educator,
behavioural management consultant and perhaps an occupational therapist. Such
teams may be found in special units for autistic children. Although they may lack
special experience, local professionals and the teachers at your local day care can
perform a reasonably good assessment, especially if they work closely with the one
experienced physician or psychologist who made the diagnosis.
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6. Is it true nothing can be done for autistic children ?
No.
Even for the most severely autistic and retarded children, there is always something
to be done. For brighter children with milder behavioural symptoms, the outcome
can be good, certainly much better than it might seem when the diagnosis is made.
7. What can be done for autistic children ?
Firstly, it is important to arrive at a medical diagnosis of exclusion: to be sure that there
is no medically identifiable condition, which might be medically treatable now or in
the future, which is causing the autistic behaviours.
Secondly, autistic children respond to educational and behavioural management
programs. These must be highly structured (directed by the adults, with little
opportunity for the child to do nothing), oriented toward rewarding appropriate or
improving behaviour at the child’s own developmental level, and involving one on
one teaching and plenty of praise and reward. Such programs may be provided the
home or in a day-care setting. It has been proved by researchers in England over
twenty years that such programs are very much more helpful than permissive ones
which indulge the child’s apparent wishes. Programs must be developed individually
for each child, preferably by parents and professionals in partnership. It is important
to try to understand the meaning to the child of each behaviour that seems to get in the
way of normal progress. Generally these interventions work best on the more difficult
behaviours (such as tantrums, aggression, and sleep disturbances), and on rituals
and routines, play and interest in others; there was less benefit on language use and
none on measured intelligence. “Treatnient of Autistic Children” by P. Howlin and M.
Rutter, published by Wiley in 1987, is very helpful in describing such programs.
When considering the claims of a particular system of therapy it is important to
remember that the outcome of individuals with autistic spectrum disorders is very
variable. Not surprisingly, how well somebody adapts to their autism as an adult is
greatly influenced by their intelligence or ability to learn, and this cannot really be
measured before age six years. True autism is life-long, but about one third of adults
with autism and P.D.D., although “different” in unique ways from other people,
may be successful and more or less socially independent. Very bright autistic people
usually do well. Because the diagnosis of autism and P D.D. can be very difficult in
the early years, a number of children who at first appear obviously autistic but who
really have other sensory and/or communicative disabilities can normalize very
quickly -I see one or two each year If anybody claims to “cure” autism it is important
to look closely at how they make the diagnosis!
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So many children, particularly those with less severe developmental delays, will show
a steady improvement with the educational and behavioural approaches generally
available, and once they are in a program their parents become delighted with their
gains. There are not enough programs around, and not enough professionals familiar
with them; waiting lists are shockingly long. Behavioural approaches (“ABA”) seem
to offer the best hope at present, but there are many other innovative and sincere
approaches - the “Miller method”, “Giant Steps”, “floor time”, “sensory integration
therapy” which some professionals and parents feel are sometimes helpful. We need
much more research to make our decisions on evidence rather than hope or faith.
But for many children there seems to be no progress at all. A large proportion of
children develop epilepsy (seizures), and there is a group which becomes worse as
teenagers. When progress is bad, and this is very often when the child is very far
behind developmentally and the behaviour impossible to live with, it is tempting to
try unorthodox and quite unproven ways of helping. I would include chiropractors,
naturopaths, iridologists, and reflexologists amongst those only contribution to these
children and their families is the production of false hopes! If you are tempted to
follow these routes, I hope you will let me know so we can discuss worries.
8. What about diet, and vitamins ?
Because we do not know the “cause” of the autistic spectrum disorders it possible
that at least some cases are caused by biochemical disturbances in the brain. Many
biochemical disorders can respond to changes in diet -diabetes is a good example but
there are many others. There is evidence that some autistic people have biochemical
differences in their brains, so it is quite reasonable to experiment with substances that
might change brain chemistry - these may be vitamins, metals, other foodstuffs or
drugs.
Because many autistic children seem to have too much serotonin, and bananas are
very rich in this substance, it is probably wise to avoid this fruit -or at least to note
down very carefully any changes that seem to follow eating a lot of bananas. We
know that children short of iron concentrate poorly, so that any hyperactive or
inattentive child deserves the simple blood test to measure the ion-carrying protein
ferritin, or a course of iron tablets.
One theory suggests that some autistic people may absorb milk (casein) and wheat
(gluten) peptides which resemble natural neurotransmitters and have a bad effect on
brain function. Some parents keep their children on a diet free of milk and wheat -but
the evidence that this helps is lacking.
One expert on autism, Dr. Bernard Rimland, has published evidence that high doses
of vitamin B6 (thiamine) and aluminium have helped many autistic children; many
28

other researchers have been unable to repeat his experiments. Thamine is well-known
to be helpful in certain types of epilepsy and it is clear that it can have strong effects
on the brain. However it can also cause nerve damage and has been banned in some
countries. Despite this, some parents believe this mixture has helped their children
and it may be worth trying when progress is slow.
Remember that vitamins become poisons in large doses, and can cause liver damage.
Autism is not caused by bad diet; if you change the diet in any way, make the changes
small; if you omit anything from the diet please let me arrange a consultation with
our nutritionist to make sure we are not making a new problem.
If you notice that your child’s behaviour always gets worse following certain foods,
these foods should usually be avoided. Let me know your observations. Many autistic
children have difficulties with the sulphites and phenols, which are present, for
example., in apple juice, and if you notice this we can discuss nutritional modifications.
There are suggestions that zinc deficiency may cause some aggressive behaviors.
Please ask for my handout on nutrition and behaviour if you are interested.
9. What about drugs ?
Drugs may have a place in helping autistic symptoms, just as they have in helping
most types of abnormal behaviour. We know that the brain is a biochemical factory
that the changing proportions in various parts of the brain of the fifty or so natural
chemical neuro-transmitters creates our mood and activity level, habits and obsessions,
and indeed every aspect of what we do and how we feel. As we learn more and more
about how the brain works, we are better able to help behaviour by the use of drugs
which change the way the natural neuro- transmitters are made or used up, or which
are so close to the neuro-transmitters that they have the same natural effects on the
brain.
Many drugs have been used in people with autistic spectrum disorders; there is no
drug, or combination of drugs, which always helps everybody, but there are particular
behaviours, which are likely to respond to particular drugs. Generally I use drugs
very little - but in some cases the use of drugs, although frightening at first, can hive
almost miraculous effects. If all is going well drugs have little place – but when
abnormal behaviour gets in the way of learning the child deserves a carefully watched
trial of possible drug benefits. Risperidone is the first medication, which seems to
have produced any improvement in the core symptoms of autism in some children -
hopefully research will produce more and better medications in the future.
There ire other drugs, generally not prescribed by physicians, which some people
believe help the brain to work better. Usually these are in the “false hope” category -
but I do have some information on these “smart drugs” and am always ready to
29

discuss them and research their possible side-effects. Never trust anyone who offers
you a very expensive drug and promises a cure!
Physicians who believe in, or are prepared to experiment with, the theory that autism
reflects an immune disturbance in the brain, may prescribe steroids (prednisone) or
other drugs, which suppress or try to regulate the immune functions the body.
10. What do we do now ?
Firstly, look after yourselves as parents, as individuals, as a family. Your autistic/
PDD child needs you to be fit and rested and happy. Look after your own needs -do
not be afraid to leave your child with others to get yourself a rest and some “fun”. If
you have other children, do not neglect them because of your special child.
Do not be afraid to discuss your feelings and your own health with your family
physician or paediatrician, with a social worker, religious adviser or family friend.
Second, contact parents organisations - locally, regionally, nationally. There are
organisations for autism, for mental retardation, and for almost every rare disease of
the brain. The National Trust will help you with addresses and contacts.
The author of this section is :-
A. MERVYN FOX
M.B.B.S., F.R.C.P.C., F.R.C.P.H., D.C.H.
Associate Professor, Paediatrics & Psychiatry,
University of Western Ontario

AUTISM
NATIONAL TRUST
FOR THE WELFARE OF PERSONS WITH AUTISM,
CEREBRAL PALSY, MENTAL RETARDATION AND MULTIPLE DISABILITIES
Ministry of Social Justice & Empowerment
Govt. of India
9th Floor, Jeevan Prakash Building, 25, Kasturba Gandhi Marg,
New Delhi - 110001