Autism is the rapidly growing neuro-developmental disorder in the world. According to the first rigorous estimate of the country’s autism prevalence, nearly 23 of every 10,000 children in India have Autism. Fortunately, the process of identifying and obtaining diagnosis at earlier stage for autism has improved in the past two decades whereas there are more services catering to the needs of autistic children and awareness levels have also increased among general population. Inspite of all these enhancements in the autism movement, the social acceptance of the autistic children still remains very low which not only effect their overall development but also tends them to live a miserable life.
If autistic children are to have a scope to reach their apex potential and have dignified futures, the gang of parents, teachers, siblings, medical professionals, and other relatives will have to constantly work together as a team and urge for the rights of this often marginalized & vulnerable sector. But at present, the necessities of autistic children are not being met either in the regular/special education systems or by the parents who face range of challenges and emotional consequences in raising the child.
It is observed that autistic students participate least in the classroom, are more likely to be target of bullying and have high rates of absenteeism, suspension, exclusion and homeschooling. With an understanding teacher or possibly a right-hand advisor, a more able autistic child can function very well in a regular school, and learn valuable social skills from his peers; but rigidity and pressure of Indian schools make it difficult for these children to cope without special allowances. As a consequence, children have to attend special schools, which often lack an understanding of effective methods for handling the challenging behaviours of autistic children. These schools even refuse to take the admission of children as they are not coherently equipped to manage them, who are sometimes more difficult than mental retard children alone.
Must-be-Taken Initiatives by Schools & Government
Every school need to formulate awareness on difficulties faced by autistic children to their teachers & families and other students that will develop a right empathy by our community towards the true acceptance of these children. Additionally, these students should not be forced for handwriting and their assessment shouldn’t be handwriting based. They should receive a copy of the notes written on the board by teachers, and allow flexible breaks & time away from other students, if required. Though there are rules for giving seats to children with disabilities in every school, but it doesn’t facilitate them as these schools fail to provide quality special education; thus government should make a special education unit mandatory in every school. After passing the school leaving exam, the government should coach and help them in getting good job & settling in their respective job.
Adding to these, Mini Dwivedi Gopinathan, Founder &Director, Playstreet, says, “Like Rehabilitation Council of India, there should be a governing body for inclusion which will not only enforce tools & technology (enabling child to learn) & special guidelines to ensure the safety of children against bullying & sexual abuse but also modify curriculum meeting autistic children’s special requirements and focus on functional & pre-vocational academics to sustain lifelong meaningful learning. Most importantly, the council should enforce schools to concentrate on individualized education program wherein the schedule of each autistic child should be organized, structured and predictable according to their condition and they keep posted on the changes (happen apart from their usual schedule) to help them cope better.
Barrier in the Way of Inclusive Education
However, inclusive education faces many challenges like insufficient funds for special equipment, resources and services; a limited number of certified special education personnel; and lack of proper training & guidelines for teachers & schools in mainstream with inclusion issues, even the senior-level administrators are not sufficiently knowledgeable with inclusion practices. There have been also common concerns such as teachers’ time taken away from the rest of the students, class size, and safety of children with special needs.
Furthermore, the achievement outcomes and post school success for inclusive students remain far below desirable levels. Given these concerns, parental involvement in the education of autistic children becomes very crucial. Researchers have shown the positive effects of parent involvement, home environment and parental support at home for enabling learning in students with special needs.
Importance of Parenting
On the other hand, schools consider parental involvement in the education of their children with special needs as a support in a child’s education, linking two important contexts in a child’s life education: home and school. It is parental participation in the educational processes and experiences of their children including the child’s education, social activities, language, motor abilities and motor coordination that helps the utmost development of a child with special needs. “Unlike regular education, parent involvement in special education should be formally implemented as it has to be achieved through individual education program and planning. They should also get well defined goals for their child to work at home and if required they should be allowed to shadow their children in the school. It will help to manage the cost and manage anxieties of children but at the same time, parents should also adhere to the discipline guideline by schools and should not interfere in schools’ administrative processes,” avers Shereen Idiculla, Director, Clinical Services, PlayStreet.
But, the child’s problematic behavior, attributable to their intolerability to changes in the environment and highly routinized behavior are making parenting demanding & difficult. “It is not at all easy to manage my 14 years old son when he is angry/his demand is not fulfilled.I find it hard to juggle his needs with those of my other two children and always feel torn into pieces because of how much they all need me. Although our financial condition is not good but as parents, we try our best to give him all medical interventions available nearby. Meanwhile, it’s so difficult to travel along with him and our financial constraints prevent us to provide him good medical treatment as suggested by the doctor,” said Sultana Praveen, mother of an austic kid.
Like Sultana, many parents are looking forward for the planning residences & centres for autistic children where their children can spend their life and get all required supports & facilities after the parents’death as people with autism have a normal life span and many will require considerable support after their parents’ death. The families with autism should receive special education aid from government to make the schooling of their child affordable. More importantly, autism in India needs to be viewed in the context of attitudes toward disability.
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