Raising an autistic child is not an easy task. As a mom to an autistic child, am here to share my learning. Also, some tips to ensure quality of life for your autistic child and the entire family.
By Rekha Supriya
In India, there are approximately 1.4 million people with autism and many are still unidentified or misdiagnosed. Autism affects the person throughout his life, in all aspects of his day-to-day living, and in the way he communicates and relates to other people. It affects each individual differently and in varying degrees. Hence, an accurate diagnosis and an early identification can provide the basis for an effective treatment programme.
The journey of making an autistic child take care of himself is not easy. It begins with the grief and despair of parents when their child is diagnosed as autistic. Autism affects every single member of the family. Simple activities such as visiting places or inviting friends home, turn into nightmares.
Further, siblings of children with autism often bear the brunt; they are often teased by their friends and peers, they lack privacy, their life at home is disrupted and they have a feeling of resentment that the whole focus of the family is always on the autistic child.
Also, parents face grave challenges both in their personal and professional lives. However, many say that seeing the world through the eyes of an autistic person has a very positive and enriching effect on them, making them more tolerant towards others and to life in general.
Autism is a developmental disorder that usually appears during the first three years in a child’s life. It has a triad of impairments in the following areas: information processing, communication and socialisation. According to research, a neuronal excess in the prefrontal cortex of the foetal brain, results in the development of autism. Autism falls under Pervasive Developmental Disorders which also include Asperger’s disorder. It is also four times more prevalent in boys than in girls.
Some similarities and differences between autism and Asperger's disorder are listed below:
In both the disorders, the following is observed: absence of pretend play, intolerance to a change in routine, lack of interest in other people, sensory issues and poor eye contact.
In Asperger's disorder, children can have relatively normal early speech. They would, however, tend to interpret language literally, and not understand nuances. The child’s motor milestones tend to be normal. Social interactions are slightly better than those with autism. The child can attend mainstream schools, though he may appear odd and talk oddly (in a high-pitched monotonous voice, uttering long monologues, etc.). With age, the child may become more interactive, have little or no common sense and may realise that he is different and be ignored or avoided by his peers and society.
Autistic children may exhibit some of the following traits:
Most autistic children are non-verbal, hence, parents have to provide them some tools for communication. Parents can either use high-tech devices like Avaz (a tablet with a touchscreen and voice output), computers and the like, or low-tech devices like picture charts, letter charts and word charts, to help their children communicate better. The aggression comes down substantially if children are able to communicate their wants and difficulties.
It is crucial to cater for the senses of autistic children for their well-being. For this, occupational therapy needs to be carried out by the parent, and not just by the therapist. When their sensory cravings are satisfied or their needs are met, autistic children become calm and receptive to learning.
It is very important for the siblings of autistic children to have normal relationships with friends and peers. It is also important that the sibling helps his special brother to be a part of group games that enable the learning of social skills. Autistic children, much like normal children, learn best from their siblings. Further, the autistic child should learn to empathise with the sibling and not look upon the sibling as his ultimate caretaker, like after the parents’ demise.
Parents, when faced with the daily challenge of bringing up a special child, forget to teach him certain responsibilities. Autistic children have to be taught the right values and priorities. It may appear that they neither understand nor care, but we must never underestimate their intelligence. From early childhood, irrespective of the level of disability, every child should be taught to face the consequences of his behaviour.
Many autistic children can do puzzles, skate, do mathematical calculations and remember dates better than most. While parents can hone these special skills, they should not lose focus on making the child self-dependent. An all-round development is desirable. It is unfair to make the autistic child dependent on a caretaker for his basic needs.
Finally, as regular people, we have many abilities: the ability to know, to perform simple everyday tasks, to communicate thoughts and feelings, to adapt to situations and circumstances, and to make multiple decisions regarding diet, appearance, education and choice of profession. We can take care of ourselves and others, and be a part of the community. But to children with autism, these abilities and choices are not available, seriously compromising their quality of life. So, our goal and duty as parents is primarily to improve their quality of life, so that they may lead a full and independent life having meaningful emotional and social relationships.
Rekha Supriya is a parent of an autistic child. She heads a school, run by a trust, for autistic children.
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