Overview
of AFA Services and Activities
Clinical
Services
One of
the most difficult periods for parents with autistic children is the
time during and after the initial or confirming diagnosis of autism.
Because many professionals in India are still largely unaware of the
long-term potential of autistic children, or effective training methods,
parents are commonly given an overly pessimistic and discouraging view
of their childs' future. In some cases, the opposite occurs: parents
are erroneously told that their autistic child will "outgrow"
the current problems, and no special intervention is required. Neither
of these extremes is true, and a realistic and positive approach is
immensely helpful. AFA offers several types of clinical services, which
are particularly geared toward parents who,for
whatever reason, can only visit the centre on a fortnightly basis or
less – for example, those who live in far-flung areas of Delhi
or in other parts of the country who want early intervention for their
child and/or training for themselves.
All programmes start
with an initial assessment of the child. Based on the child’s
behaviours, learning patterns, training and the teaching methods best
suited to him / her, a plan is made keeping in mind the child’s
current needs as well as the parents immediate concerns.
(a) Diagnostic
Assessments
Diagnostic assessments as well as a differential diagnosis is made following
a detailed observation of the child and interview with the family.
(b) The
Centre-based Programme for Home Management
Programmes for Home Management are schedules and plans designed by the
parent and an AFA therapist together. Tailored to each family’s
individual needs, they provide structure for daily routines and activities
that the family carries out with the child at home. The plan is implemented
at home and the family returns for an update at predetermined intervals
of a fortnight or more. The programme also gives families an opportunity
to discuss for solutions to vexing issues of behaviours and learning
of daily living skills
(c) Two
or Three Day Extended Home Programme for Out Station Families
Outstation families often visit AFA and receive an intensive three-day
programme of observation, counselling, work sessions with the child,
feedback and discussion. Where families so require, IEPs and functional
assessments are also carried out. Because
the characteristics and behaviors of autistic people vary so widely,
the individualized nature of these programs is particularly crucial,
and parents are encouraged to stay in touch with AFA to make modifications
and implement additional skills. Families from throughout India and
abroad have received this service.
(d) Occupational
and Sensory Assessment
This program is planned and conducted on an individual basis to address
difficulties related to sensory integration. The input is provided by
an Occupational Therapist after a detailed assessment of the needs of
each child.
(e) Functional
Assessments
Autism is hallmarked by an uneven skill profile. Functional assessments
provide detail report of the current level of performance of the child
in various skill areas. A functional Assessment is done through a series
of direct work sessions with the child, observation and discussion with
the family. Individualized Education Programs can be prepared on the
basis of FA.
(f) Family
Counselling
Family
counselling soon after discovery that a child is autistic can greatly
broaden the parents' options of how to most benefit their child, and
can improve their ability to make positive, long term decisions by providing
an opportunity to sort out factual information from misinformation.
Counselling
is also provided to family members for dealing with issues related to
the pressures and stress of parenting a child with autism, parenting
the sibling of a child with autism, living in a nuclear or joint family,
second child issues, or any other concerns families may have. Appropriate
coping strategies can be discussed and developed with inputs from psychologists
and medical professionals. Parents
also receive referrals to schools and services elsewhere.
Open
Door Teaching Methods Day Programme
Recognizing
that educational strategies used with Autistic children must be highly
specialized, Open Door, a laboratory school, was begun in March 1994.
Open Door has gained recognition as a model school for Autistic children
in India, and serves a unique dual purpose. As with any quality institution,
the pupils and their families receive direct benefit and an improved
quality of life. Just as important, the school is used to test, modify,
and adapt training techniques gathered from around the world to the
Indian context. In a controlled setting, new techniques are tested before
being referred as an effective technique to parents and professionals
in other parts of India.
Open Door
adheres to a philosophy of acceptance of the childs' behavior and the
use of a highly individualized, structured program with each child.
The Day Programme
has proven itself to be a pioneer and a model of teaching strategies
for children with autism and other communication disorders. A high level
of family involvement ensures synchrony between the home and school
environments. Currently, the Day Programme has five sections in which
the children are placed depending on their needs and abilities. The
initial emphasis is on building basic interaction skills, pre-reading
and writing skills and concept building. Concepts are taught in one-on-one
sessions, while group activities are used to develop social skills.
Alongside, the child’s abilities to work independently and interpret
instructions in a general environment are built up. Gradually, the children
learn work behaviours that enable them to learn vocational skills. In
‘Aadhaar’, the Work Skills Training Centre the focus is
on building the student’s awareness of current affairs, living
skills like shopping and cooking, training in vocational areas such
as weaving, block printing and basic office skills like mailing. The
school combines group activities and one-on-one teaching, as well as
music therapy, computer and sensory integration classes.
More
Information about Open Door
Frequently
Asked Questions about Open Door
Mother
Child Programme
AFA’s Mother
Child Programme is run over a three-month periods and start each January,
July and October. A group of approximately 15 to 20 mothers train together
(with their children) throughout the duration of the programme incorporating
elements of different interaction-based interventions (e.g. Greenspan,
Parent-Child Interaction Therapy).
The programme seeks to maximize the benefits of the time that a mother
spends with her child, teaching focused one on one intervention tailored
individually to each child and taking into account the child’s
strengths, emerging skills and weakest skill areas. One-on-one intervention,
in a nurturing positive environment, helps a child with autism to overcome
much of the severity of the disorder. The programme also prepares children
to join school setups and learn in a group through the activities done
in group teaching sessions. The
programme provides an environment where mothers can work with their
children under the guidance of an experienced, trained therapist. Mothers
are given extensive feedback and join a discussion group where they
can compare perspectives and forge links with parents experiencing similar
difficulties. This programme is available to interested fathers, as
well.
See also:
Annual Training Workshop
See
also: Mother-Child Programme Research Project
Hourly
Intervention Programme
The hourly intervention programme is a regular ongoing programme where
a therapist works one-on-one with the child one or more times a week
as determined by the parents. Parents are encouraged to observe the
sessions. Each session is followed by a discussion with the parent /
family member who accompany the child and observe the session. The discussion
covers the session, the child’s general progress and other queries
so that the work can be continued at home. This programme is attended
by children in mainstream schools needing support, children preparing
for mainstream schooling, children in special needs setup requiring
additional support, children who are being home schooled, and children
who are not receiving any other special education inputs. The hourly
intervention programme is available to families four days a week (Monday,
Tuesday, Thursday and Friday, as well as on second Saturdays).
See also:
Annual Training Workshop
Our
Journal, The Autism Network
While journals
about autism are available from the U.S., U.K., Australia and other
developed countries, these publications are often not relevant to families
in India, where services, education, health and legal issues are vastly
different. The Autism Network is a forum for those who deal with
autism in India by bridging the gap between what occurs elsewhere in
the world with here in India. Therefore the focus is on dealing with
autism in our own cultural context while simultaneously including information
from around the globe. The journal aims to bring parents of different
regions and backgrounds together to share their own experiences and
knowledge. Starting with a circulation of less than 100, the journal
now reaches approximately 700 parents and professionals in India and
overseas and is acknowledged as a uniquely useful tool in autism management
and intervention.
See
the Autism Network Index
Subscription
and Submission Information
Workshops
& Lectures
For over
a decade, Action for Autism has conducted practical and interactive
training workshops in handling autistic children, and these workshops
for parents and professionals have become one of the main avenues by
which information about autism has spread throughout India. Members
of AFA have presented shorter parent training workshops in cities outside
Delhi, including Mumbai, Kolkata, Bangalore, Chennai, Goa, and several
cities abroad. AFA has also coordinated with professionals from throughout
the world to present on various topics. Just a few of these topics include:
RDI, behavior modification, TEACCH, developing Individualized Education
Plans, verbal behavior, AAC strategies, neurologic behavior aspects
of the PDDs, and sexual concerns among individuals with autism.
General
Information about the AFA Training Workshops
Link
to Past Workshops and Lectures affiliated with AFA
Teacher
Training: RCI recognised course Diploma in Special Education (Autistic
Spectrum Disorder)
Autistic
children benefit most from teachers with a comprehensive understanding
of autism and autism-specific techniques. Action for Autism offers
an RCI recognised course in Autism. Through this, teachers are trained
to be comfortable with the principles and practices of different methods
for working with persons with autism. Teachers are also trained to approach
students with a transdisciplinary approach: along with special education,
they gain knowledge of behaviour modification, social development, language
development, and family counseling. Successful candidates receive placements
in leadings organizations, and have also been absorbed into Action for
Autism.
Resource
Library and Information Service
At present,
there is an extreme dearth of information available about autism in
India. Parents often resort to looking in a dictionary to find the meaning
of the word after their child is diagnosed, and then are dismayed to
find that no books or journals are available in the libraries about
autism. Similarly, psychiatrists and psychologists often have little
information beyond a short paragraph from the medical textbooks. Yet,
hundreds of books have been written on all aspects of autism, as well
as on-going research in a dozen countries around the world, and several
thousand links on the Internet. Because of the prohibitive cost of these
books and services, the majority of families are not able to obtain
all the information they would like. Action for Autism obtains the most
current and relevant books and journals from abroad and makes them available
to those interested. The AFA library currently has approximately one
hundred titles of autism-related books, and also maintains files on
thirty-odd autism-related topics, conference proceedings, journals and
newsletters from abroad, historical information, and a file of popular
media articles on autism in India. The Centre also has a TV/VCR for
parents and professionals to watch videos on various topics. For those
outside of Delhi, we field requests for photocopies of certain topics
and compile packets as per the individual's needs.
Partial
list of available titles from the AFA Resource Centre
Research
Action
for Autism has a longstanding committment to research in the field of
autism. We strongly believe that research in all areas of development,
language, socialization, family functioning, and diagnosis, as well
as more basic research in areas such as genetics, functional magnetic
resonance imaging (fMRI), and other more specialized technologies can
help us better understand both the phenomenology and treatment of people
with autism. With its vast network of families throughout South Asia
and connections to families throughout the world, AFA has been pleased
to participate in many collaborative research projects, as well as provide
support to visiting scholars from abroad. We learn greatly from these
research collaborations, and look forward to future opportunities.
Autism
Research in India
Details
about the Professional Awareness Campaign/ Research Project
Awareness
Raising
Increasing
awareness of a lesser-known disorder such as autism is necessary for
doctors to make accurate diagnosis and for society to begin to integrate
autistic individuals into the mainstream. Action for Autism has undertaken
various projects to promote awareness and understanding about autism
among parents and professionals as well as the general public. From
1994 to 1996, AFA mailed brief information sheets on autism to paediatricians,
psychologists and psychiatrists in order to sensitise them to the symptoms
of autism. Action for Autism continues to raise awareness among the
general public through popular media articles, and awareness-raising
events, such as our Annual Concert. Most recently, AFA has produced
the first awareness film for autism from South Asia, entitled 'Autism:
An Indian Perspective.'
Media
issues
Press
coverage of autism in India
Details
about the Professional Awareness Campaign/Research Project
Order
a copy of the film, 'Autism: An Indian Perspective'
Government
Lobbying
Based on
current population estimates, there are over 1, 900, 000 people
in our country who are on the autism spectrum, yet autism has only recently
gained recognised by the Government of India as a disability, largely
as a result of the lobbying by AFA from 1995-1998. In India it is still
confused with other forms of mental retardation. Government recognition
of autism in India is an ongoing campaign of Action for Autism. In October
of 1996, AFA led a delegation of parents of autistic children from throughout
India to meet the Secretary of Welfare and lobby for inclusion of autism
in the National Disability Bill. In February of 1997, AFA subsequently
met with the Joint Secretary of Welfare, the Minister of State for Health
and Family Welfare, and the Lieutenant Governor of Delhi. AFA has been
successful in having autism included in The National Trust Bill. Lobbying
will continue until appropriate legal reforms for people with autism
and related disabilities have been achieved.
Update
on Legal Issues in India
Networking
Action
for Autism actively seeks partnerships with other non-governmental organizations
and persons interested in autism both within India and abroad. These
relationships help share experiences and insure that support is provided
to as many families as possible. To facilitate this process, AFA is
establishing a Federation of Indian Autism Organisations to represent
the various schools and parent support groups all over the country.
Members of AFA have attended conferences in Scotland, the U.S., Denmark
and the Philippines, and have active collaboration with national organisations
several countries. AFA also represents South Asia in the World Autism
Organisation (WAO), based in Europe. Within India, AFA also participates
in the activities of organisations dealing with mentally and physically
disabled to help foster relationships with regional groups. As just
one example, Action for Autism was one of the primary organisers of
the Friends Club, a monthly "jam session" for teenagers and
adults with mental disability. These social gatherings were a chance
for people to get together in a relaxed and enjoyable setting, and helped
provide teenagers with autism the socialisation with peers often difficult
to find.
List of Autism Organisations
Worldwide
World Autism
Organisation Website