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Overview of AFA Services and ActivitiesOne 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
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.
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).
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.
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.
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.
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.
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.'
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.
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.