Autism Spectrum Disorder (ASD) is known as a complex developmental disability, a disorder of neural development characterised by impaired social interaction and verbal and non-verbal communication, and by restricted, repetitive or stereotyped behaviour. A person with an ASD typically has difficulty with social and communication skills and live with social exclusion and disproportion. Social exclusion is the process in which individuals or entire communities of people are systematically blocked from (or denied full access to) various rights, opportunities and resources (e.g., housing, employment, healthcare, civic engagement, democratic participation, and due process) that are normally available to members of different groups, and which are fundamental to social integration within that particular group. Disability and resulting discrimination characterize the disabled. And non-disabled individuals who are accepted as the standard of 'normal living', move freely in public and private places and services, education, and social work that are built to serve 'standard' people, thereby excluding those with various disabilities. Studies have shown, employment is needed not only to provide a living but also to sustain mental health and well-being. On the other hand, a child may also describe a relationship with parents (such as sons and daughters of any age) or, metaphorically, an authority figure, or signify group membership in a clan, tribe, or religion. It can also signify being strongly affected by a specific time, place, or circumstance, as in "a child of nature" or "a child of the Sixties". Adolescence, transitional phase of growth and development between childhood and adulthood. The World Health Organization (WHO) defines an adolescent as any person between ages 10 and 19.
We do not accept an autistic child to be a normal child in the society. People with autism have social impairment and often lack the intuition about others. Social impairment becomes apparent early in childhood and continues through adulthood. Autistic infants do not react to social interactions, smile or look at others, and respond less to their own name. Three-to-five year-old autistic children are less likely to exhibit social understanding, imitate and respond to emotions, communicate nonverbally, and take turns with others. Making and maintaining friendships often proves to be difficult for those with autism. According to the National Research Council (2001), children with autism have major difficulties in both their social and emotional relationships in a number of areas: a) They have low rates of social initiation with and response to peers; b) They engage in little nonverbal communication; c) they pay less attention to others' emotional outbursts than to their typical peers; d) they show less empathy or shared emotion. Sigman and Ruskin (1999) revealed that children with autism generally show a lack of social attention and are particularly deficient in coming face to face with other people. Children with autism also have particular difficulty in their social relationships with peers. This may be because they have less opportunity to engage in the development of fundamental skills, such as, communication, emotional regulation, conflict resolution, and co-operation skills, which are fundamental to successful social relations.
Socio-economic factors have a major epidemiological value which may be considered as an effective factor in developing, aggravating or preventing a diseased or unusual situation in human body. The study revealed that the approximate figure of maximum family's income is between 5001-10,000 BDT. On the other hand, in a developing country like Bangladesh, most of the family expenditures of semi-urban areas are higher than their income. The study shows that maximum family's expenditures are 53 per cent of their income level of 5001 to 10,000 BDT. Rearing a child with autism is not only stressful and difficult, but also expensive. Many people do not know the costs associated with raising a child with autism. Parents of autistic children have additional expenditures that can turn a middle-income family into a low-income family in a matter of months. It is estimated that most of the family (72 per cent) consume = 5000 BDT per month due to poverty and low-level income. It is also assessed that expenditures for a child with autism is quite high. Expenditure of = 5000 BDT per month of a family is high in a developing country like Bangladesh. All the demands of family members can not be fulfilled with the family income. 29 per cent respondents said they were able to fulfil the demand of their children with their family income. But it is a matter of regret that 60 per cent of the respondents are not able to meet the demands of their children with autism. 09 per cent respondents somehow could meet the demands of their children with autism. 01 per cent respondent gave no answer.
In the context of a developing country, governmental and non-governmental assistance may be made available for people with autism spectrum disorders, which may include Medicaid Home and Community Based Waivers, Social Security Income, and Social Security Disability Insurance. This study has found that 17 per cent respondents are getting financial help from Government, 28 per cent from NGO, and 55 per cent respondents are yet to receive any assistance either from government or NGOs.
Having a child with developmental or psychological problems is always stressful for their parents who are taking care of them, even when the child is a grown up person, which would cause a constant incompatibility of parents with their child's disability in their social life. These parents, other than bearing financial pressures, are always facing emotional pressures such as feeling ashamed or guilty at the time of attending social functions with their children with ASD. 14 per cent of parents attended at social functions with the child with ASD, 46 per cent parents attended now and then at social functions with the child with ASD, but 40 per cent parents did not attend social functions with the child with ASD due to avoid unpleasant situation that may arise. Due to high level of parental stress among our studied samples, special education and early intervention are needed for parents to enhance their diagnostic knowledge.
Parents of a child with autism spectrum can experience a range of different feelings, which surface from time to time. These feelings are natural and normal reactions of parents. All parents respond to the demands of children in their own way. It is not easy to be the parent of a child with autism spectrum. There is no denying of the fact that the challenges faced by parents are many. Parents consider themselves sick, fight for services, sacrifice careers, sink into debt, and rage at the injustice of it all.
Figure (02) shows feeling pain with some one's misconduct with your child with ASD.
Feeling pain with some one's misconduct with the child with ASD or normal child is a regretful matter for the parents. But unfortunately, 74.0 per cent of parents expressed with regrets that they are always pained to see the misconduct with their child with ASD by someone. 17.0 per cent of parents said hat they are sometimes in pain in this respect, while 09 per cent answered it did not matter for them.
Child neglect is defined as a type of maltreatment related to the failure to provide needed, age-appropriate care. Unlike physical and sexual abuse, neglect is usually typified as an on-going pattern of inadequate care. Once children are in school, often child neglect is observed. Professionals have defined four types of neglect: physical, emotional, educational, and medical. These four types of negligences are all related to the child with ASD. 75.64 per cent of parents are facing family negligence, 23.08 per cent face it infrequently and 1.28 per cent never face it. Social exclusion and discrimination mounts from this family negligence.
It is assessed from the table that most of the parents (91.03 per cent) demonstrating autism as the indicator of social exclusion and 08.97 per cent parents did not think so. 75.64per cent parents think their children are socially excluded from mainstream education, 93.59per cent think from special academic education and vocational training, 87.18 per cent from social dignity, esteem and honour, 91.03 per cent from family negligence, 96.15 per cent from proper Medicare facilities, 60.26 per cent from making social relationship. On the other hand, 89.74 per cent parents believe autism as
the indicator of social discrimination, while 10.26 per cent parents do not believe it. 88.46 per cent parents think their children are living with social discrimination because of family negligence, 65.38 per cent consider it absence of peer relationship with normal child, 60.26 per cent in lack of social dignity, esteem and honour, 85.90 per cent in special Medicare facilities, 93.59 per cent in special education & vocational training, and 98.72 per cent in playing games with normal child.
Now it is high time for the society to take steps for the welfare, education and development for the child with ASD with the help of government, non- government organizations, local administrative bodies, and religious leaders. Only academic education, according to 42.31 per cent parents, vocational education according to 53.85 per cent, proper training according to 26.92 per cent, and creating the facilities of playing game according to 14.10 per cent, may be of help in this respect. But it is assessed that 88.46 per cent parents believe that mainstream academic and vocational education may perhaps support in this regard. 85.90 per cent parents have faith in creating opportunities of giving financial assistance to the comprehensive development of the children with ASD. 65.38 per cent expect to give proper honour for their development. 61.54 per cent give emphasis on reducing family negligence. 91.03 per cent parents were for availing special facilities for special child. 96.15 per cent parents want to give treatment instantly though it is tough for them but they desire it from the society. 05.13 per cent parents are found imperceptible to give answer to the questions.
GAPH- Bangladesh (2012) revealed some positive outcomes and suggests some future directions with the optimism that that the biggest gain has been in the creation of national awareness about Autism, triggering a chain of related and unrelated events and activities. The media, both print and electronic, has played a very significant role in creating awareness. Families have found new hope, and have come together in very large numbers, charting a journey from isolation and hopelessness to sharing a dream of inclusion. Civil society is coming forward to volunteer and governments are accepting their obligations and responsibilities with regard to Autism. Voluntary organizations are joining hands, recognizing the benefits of networking and sharing scarce resources. There is a whole new national level perspective and commitment to the cause of Autism, which can best be described as an awakening of a collective consciousness, unparalleled anywhere in the world. Policy development, policy adjustments and the ability to unite activities at the community level, is what the future tasks are all about. Given the enormous expectations of stakeholders, with matching government commitments, this can be achieved by the collaborative efforts of all governmental departments, non-profit organizations, tertiary institutions, parent bodies and professionals, civil society and the media in Bangladesh.
The writer is a Lecturer at the Department of Sociology of Bangabandhu Sheikh Mujibur Rahman Science and Technology University, Gopalganj-8100, Bangladesh.
anishaman01@gmail.com
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