Overview
of AFA Services and Activities
Action for Autism
offers a full range of clinical services and intervention programs,
and has active divisions for trainings, publications, research, and
advocacy. We encourage you to read about our activities below and become
a part of our work.
Assessments
(a) Diagnostic
Assessments
Screening and diagnostic assessments are made following detailed observations
of and interactions with the child, as well as comprehensive interviews
with family members. The specific protocol selected will depend on the individual child and his or her background. We rely on internationally standardised diagnostic criteria
(DSM 4 TR) and a variety of standardised screening / diagnostic instruments. Since our staff are trained and reliable in administration of the Autism Diagnostic Observation
Schedule (ADOS) and the Autism Diagnostic Interview-Revised (ADI-R), these tools may be used in the process. We also have and utilise various other screening tools, including the CARS, SCQ, SRS, and different developmental assessments. Determining related disorders and
differentiating ASD from other disorders is part of the diagnostic assessment.
Following the assessment, parents are provided with feedback about the process used to reach a diagnostic decision and information on autism and services necessary
to start intervention. We find it useful for parents to bring or send ahead of time any past diagnostic evaluations, where applicable. We will review these and incorporate the information into our report.
(b) Functional
Assessments
Autism is marked by the development of an uneven profile of skills.
Functional assessments provide an insight into the current level of
performance of the child in various skill areas such as motor, speech,
communication, imitation, cognition and activities of daily living.
The assessment is made over multiple sessions through a series of
direct work sessions with the child, observation and discussion with
the family. An Individualized Education Plan (IEP) is prepared on
the basis of functional assessments.
(c) Occupational
and Sensory Assessment
A detailed assessment is made based on a sensory profile questionnaire
which addresses all the sensory systems in depth. A comprehensive
evaluation of the child is done using observation and feedback from
parents. The assessment provides a base for all subsequent interventions
for the child.
Intervention
Programmes
AFA does not view
autism or disability as a tragic condition, but rather as a different
way of being. AFA adheres to a philosophy of loving and accepting without
judgments; acceptance of the child’s personhood and the use of
a highly individualized, structured program with each child. Through
its various intervention programmes, AFA offers an eclectic mix of behaviour
based methods and structured teaching. Elements of TEACCH, Applied behaviour
Analysis (ABA), Verbal Behaviour Analysis (VBA), various forms of Assisted
and Augmentative Communication (AAC) including Picture Exchange Communication
Systems (PECS) are a part of the methods used.
(a) Parent-Child
Early Intervention Programme
The programme runs over a ten to twelve week period and starts each
January, July and October. A group of approximately 15 parents
(mothers, fathers or grandparents) train together daily along with
their children, under the guidance of experienced, trained therapists.
The programme seeks to maximize the benefits of the time that a parent
spends with his/her child, teaching focused one-on-one intervention
tailored individually to each child and taking into account the child’s
strengths, emerging skills and weaknesses. The programme also prepares
children to join school setups and learn in a group through the activities
done in group teaching sessions. More importantly the programme gives
parents the tool to understand their child, the child’s autism.
Children as young as 18 months flagged for autism during their screening
are a part of this programme.
See also:
Annual Training Workshop
See
also: Mother-Child Programme Research Project
(b) The
Open Door Day School
The laboratory school, begun in March 1994 has gained recognition
as a model school for children with autism 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.
Currently, the
Day School has seven sections in which around 60 children aged 3 –
18 are placed depending on their abilities, needs, and chronological
age. In the early years the emphasis is on developing communication,
as well as 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 developed and strengthened. Gradually,
the children learn independent work behaviours that enable them to
learn vocational skills. Children, who are ready, move on to mainstream
classrooms. The school combines group activities and one-on-one teaching,
as well as music therapy, computer and sensory integration.
More
Information about Open Door
Frequently
Asked Questions about Open Door
(c) Adhaar
Vocational Centre
Adhaar provides a specialized and supportive environment for people
with autism with special educational needs who are aged 18 onwards
to learn skills that enable them to work in a vocational setting.
The focus is on developing and strengthening functional communication,
interpersonal skills, and also building awareness of current affairs,
independent living skills such as shopping and cooking, training in
vocational areas such as weaving, block printing and bag making and
developing leisure skills.
(d) On
the Job Training Programme for Work Behaviours
Young adults with autism who are otherwise independent and function
well still often have difficulties in understanding and coping with
the dynamics of a work environment and may require additional assistance
in order to find as well as keep a job. To facilitate t learning the
skills needed in open work environments, AFA provides an opportunity
to train on the job with us. Depending on the functional skills of
the young adult, he /she is assigned a job profile. AFA simulates
work settings to provide training in work behaviours. The programme
includes aspects such as coping with unpredictable changes and developing
interpersonal skills with colleagues.
(e) Educational
Intervention Programme
A special educator works one-on-one with the child one or more times
a week as determined by the parents. Parents/caregivers are encouraged
to observe the sessions which are followed by a discussion with the
attending parent / family member. 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.
(f) The
Bubble Class: Social Skills Training Program
Children attending mainstream schools often find it difficult to follow
group instructions, comply with daily routines of classrooms like
taking out notebooks, copy from the blackboard, handle transitions,
wait for their turn in classroom activities, ask for help, and even
respond to questions they may know the answers to. To address these
and other such difficulties commonly faced by children with autism
in mainstream schools, the “Bubble Class” programme replicates
classroom situations through fun activities and builds upon social
skills necessary to interact with peers and adults. The children work
in small groups on a weekly basis with special educators and prepare
to work more effectively within their daily school activities.
(g) Handwriting
Programme
Difficulties in sensory processing, sensory awareness and/or perceptual
skills and lack of motivation are common reasons that often lead to
difficulties in writing s among other things. The premise for the
handwriting program is combining sensory activities with direct instructions.
Groups of 4 - 5 children along with their parents participate in activities
related to developing prewriting & writing skills under the guidance
of a special educator and an occupational therapist.
(h) Inclusive
Hobby Classes
The mandate of AFA is to create an inclusive environment where people
with autism can live and work as fully participating members of their
community. To move to this vision it is important that those who are
different from the norm are enabled to participate in society fully.
Proximity and exposure leads to awareness and understanding and eventually
acceptance. A variety of strategies have been used to bring inclusion
beyond the classroom and enhance this kind of inclusive learning:
through sports, through social events, and so on. AFA has introduced
a series of interventions for children with autism to build upon leisure
time skills in close proximity of children developing typically.
One such initiative
involves working with clay under an experienced potter. Pottery includes
activities that address tactile and motor issues in addition to creativity.
Clay work requires and strengthens hands functions such as grasp,
pinch, hold, release, and rolling of palm which are also required
in daily living activities. Children attend weekly classes in small
groups under the guidance of a trained special educator along with
the potter in an inclusive setup.
(i) The
Centre-based Programme for Home Management
Programmes for Home Management are schedules and plans jointly designed
by the parent and an AFA therapist. Tailored to individual needs,
the therapists provide structure for daily routines and activities
that the family carries out with the child at home. The family returns
for an update at predetermined intervals of a fortnight or more. The
programme also gives families an opportunity to discuss and arrive
at solutions to vexing issues of behaviours and learning of daily
living skills.
(j) Extended
Home Programme for Out Station Families
Outstation families often visit AFA and receive an intensive programme
of observation, counselling, work sessions with the child, feedback
and discussion with special educators, clinical psychologists, and
sensory integration therapists. Depending on their duration of stay
and where families so require, assessments and curriculum planning
may also be carried out. Because the characteristics and behaviors
of people with autism 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.
(k) Occupational
and Sensory Intervention
The programme is available for all children with autism where sensory
issues interfere with learning and daily functioning. Areas of intervention
include providing an individualized sensory diet, activities to develop
motor skills and life skills and providing training and home based
programmes for parents. Sessions are conducted by a trained Occupational
Therapist.
Family
Support Services
(a) Family
Counselling
Family counselling soon after receiving a diagnosis and during critical
phases such as approaching adolescence 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
provided to family members to deal 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 are discussed and developed with inputs from psychologists
and medical professionals. Parents also receive referrals to schools
and services elsewhere.
(b) Afternoon
Respite Care
AFA organises a daily after-school afternoon respite care for families
where both parents are working or have an emergency to deal with.
Students enrolled in the programme are engaged in a series of activities
designed to build upon daily living skills, creativity and group interactions.
(c) Weekend
Respite Care
For parents who have to work on Saturdays, families in crisis or to
simply wanting a break - to catch a movie or complete their shopping,
AFA offers weekend respite where children and young adults with autism
spend a day with their buddies and away from their parents. The programme
provides training in daily living skills through activities like preparing
lunch, and cleaning up while doing fun things such as going out for
short outings, lunch to a restaurant. Preparations are underway to
organise an overnight respite.
Trainings
Workshops
& Lectures
For over a decade, AFA has conducted practical and interactive training
workshops for parents and professionals on various aspects of autism.
AFA also coordinates with professionals from throughout the world
to present on different 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. Members
of AFA regularly present training workshops in cities throughout India,
and in Bangladesh, Nepal, Pakistan, Dubai, and the United Arab Emirates.
AFA works in close partnership with organisations in different regions
in country. AFA has also helped several individuals and organisations
set up clinical services to cater to families and children with autism
in their region.
General
Information about the AFA Training Workshops
Link
to Past Workshops and Lectures affiliated with AFA
Diploma
in Special Education (Autistic Spectrum Disorder)
Children with autism benefit most from teachers with a comprehensive
understanding of autism and autism-specific techniques. AFA offers
a two-year course recognised by the Rehabilitation Council of India (RCI) to
train special educators in autism. Through extensive exposure in practical
hands-on training and lectures, trainees learn to be comfortable with
the principles and practices of working with persons with autism.
Along with knowledge about autism and special education, the trainees
gain knowledge of behaviour modification, social development, language
development, and family counseling. Successful candidates receive
placements in leadings schools and special needs organizations, and
some have been absorbed within AFA.
List
of past DSE-ASD graduates and their current placement (12/09)
Ahaan:
AFA Publication Division
The Autism
Network, AFA Journal
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. In publication since 1994, the Autism
Network is an invaluable source of information for those who deal
with autism in India by bridging the gap between what occurs elsewhere
in the world with here in India. 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 and professionals
of different regions and backgrounds together to share their own experiences
and knowledge.
See
the Autism Network Index
Subscription
and Submission Information
Training
Manuals
A few manuals and training materials for parents and professionals
have been published and others are currently being written. Reprints
of the same are available in English and other Indian languages.
Resource
Library and Information Service
At present, there
is an extreme dearth of information available about autism in India.
Because of the prohibitive cost of autism books, the majority of families
are not able to obtain all the information they would like. AFA obtains
the most current and relevant Indian and international books and journals
and makes them available to those interested. The AFA library currently
hosts over a hundred titles of autism-related books and academic journals.
In addition, the library maintains files on autism-related topics, conference
proceedings and newsletters from abroad, historical information, and
popular media articles on autism. The library also has a facility for
parents and professionals to watch educational videos on various aspects
of autism. For those outside of Delhi, we field requests for photocopies
of certain topics and compile packets as per individual needs.
Partial
list of available titles from the AFA Resource Centre
Research
AFA has a longstanding
commitment to research in the field of autism. We strongly believe that
research is the key to understand both the phenomenology and treatment
of people with autism and build upon the existing services. 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
India and abroad. AFA is also a training ground for budding professionals.
Various students of social work, psychology, and special education from
leading universities in India and other parts of the world have interred
at AFA. AFA has an Institutional Review Board that reviews all proposed
research collaborations to ensure that projects meet important standards
for well-being of the participants, and that the projects are based
on a sound theoretical background.
See
our Research page
AILAAN
: AFA Department of Advocacy
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. AFA has
undertaken various projects to promote awareness and understanding
about autism among parents and professionals as well as the general
public. From 1998 to 2001, AFA mailed brief information sheets on
autism to pediatricians, psychologists and psychiatrists in order
to sensitise them to the symptoms of autism. A follow up study is
currently in the process. AFA continues to raise awareness among the
general public through popular media articles, and a variety of fun
events such as walks, music concerts, dance performances, dinners,
art show and carnivals. AFA also has available an awareness film for
autism from South Asia, entitled 'Autism: An Indian Perspective.'
Media
issues
Archives
of 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
Government recognition of autism in India is an ongoing campaign of
AFA. In October of 1996, AFA led a delegation of parents of autistic
children from throughout India to meet the then Ministry 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, the
Lieutenant Governor of Delhi and numerous other officials. 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
AFA 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 established
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
in several countries. AFA also represents South Asia in the World
Autism Organisation (WAO), based in Europe. AFA has formalized sister
school relationship with Heartspring, and Autism AACTION, a worldwide
centers for children with special needs based in the U.S. This partnership
offers the opportunity for additional support through a cultural and
informational exchange between the staff and the teachers. Within
India, AFA participates in the activities of organisations dealing
with mentally and physically disabled to help foster relationships
with regional groups.
List of Autism Organisations
Worldwide