Caring for a child with Autism spectrum disorder (ASD)
By Mitu De
The impact of autism on the family is quite profound. It can help the family bond together or tear it apart. An autism diagnosis is a life changing event that has far reaching implications for the future of both the child who has been diagnosed and his/her family. The uniqueness of each person with Autism spectrum disorder (ASD) makes the experience of living with autism different for each family. The Autism Spectrum includes deficits in social communication and interactions, deficits in nonverbal communication, including the recognition of facial expressions, restrictive and repetitive patterns of behaviour and interests, deficits in social-emotional interactions, and issues developing meaningful relationships.
Autism is an emotional roller coaster ride that begins before diagnosis and continues throughout life. The ups and downs, joys and sorrows are magnified during caring for a person with ASD. It is a unique shared experience for families and can affect all aspects of family functioning. When parents are given the diagnosis of autism for their children, they often experience a combination of grief, shock, confusion, fear, worry, isolation, anger, numbness, sadness and often wonder if they somehow contributed to their child’s developmental pattern. Many parents say, ‘We have expectations, hopes, dreams, and goals for our children and for ourselves as parents and spouses; but what happens when these expectations are quashed?’ On the other hand, some parents who have been seeking help or answers may feel relief and/or confirmation when they finally receive a diagnosis. The attitude of parents plays a significant role in their journey as primary care givers of a child with autism.
India is a collectivist society that emphasizes family integrity, loyalty, and unity. Indian families are considered classically as large, patriarchal, collectivistic joint families, harboring three or more generations vertically and kith and kin horizontally, with emotional interdependence, empathy, closeness, and loyalty among family members. However, the last decade has witnessed familial changes in power distribution, marital norms and role of women. With the emergence of nuclear families, the burden of care giving falls mostly on the mother. Usually the mother is saddled with the primary care of the child, while the father works hard for greater financial stability. Ranjit and Urmila, a working couple, were proud parents of two children. The younger son had autism. The parents decided that they would make sure their son got all the therapy possible. So, began a grueling routine for Urmila, who spent a greater part of the day taking her son to different intervention and therapy units. She had to leave her job in order to avail the therapy for her son. Ranjit on the other had had to increase his work assignments to be financially secure to meet the inflated cost of therapy. Their son has improved a lot following intervention and Urmila is glad she quit her job to look after her son.
When Lisa learnt that her three-year-old son had autism, a lifelong disability, she was distraught. She did not want to accept this fact. It made her feel incomplete. Her husband Jeet consoled her saying that that they could not fight with fate. But Lisa felt that she could not accept the fact that she was a mother to a disabled child. Their marriage soured. Months later she decided to leave her family and sought a divorce. She walked away from her disabled child and husband. Jeet and his sister became the primary care givers for the child.
Sanchari was a working mother. Her son was diagnosed with ‘high functioning autism’. None of her family members believed that her child had a disability because he was verbal. They said that he had behavior issues because he was naughty and not because of his inherent autism. Sanchari tried in vain to convince her family that her child required intervention because he had autism. Family members rebuked her for stating that her child was disabled and required help. Some friends in her workplace supported her. With their help, Sanchari could take her son for therapy.
In many Indian families, grandparents still live with their sons or daughters. Unlike the parents who are totally focused on the autistic child’s needs, grandparents are concerned about the effects of autism on their adult children (the parents), other grandchildren, and future generations. They also suffer stress as they are concerned about the tricky situations they see their own children experiencing. It is often the grandparents who provide the autistic child’s parents with necessary support in the way of childcare, financial support, and advocacy. However, grandparents who want to help often do not have the training in behavior management. They want to play with the child and spoil him/her, but end up feeling rejected by the lack of ‘typical’ exchange. Mr. Roy, a retired professor, watched with sadness as his son struggled to earn more money to provide for the expensive early intervention therapy. The time and financial costs, physical and emotional demands, and logistical complexities associated with raising a disabled child can have long term effects. Mr. Roy saw that his daughter-in-law Meera’s love for the disabled child and her struggle to help their child often left nothing for the needs of the rest of the family. He could feel the tension in his family dynamics.
Family Dynamics and autism
The relationships within our families become those which shape and determine the outcome of our lives. Family life is significantly altered, as every moment seems to revolve around the care of an autistic family member. Caring and raising a child with ASD is likely to bring out the best and the worst in a parent. Anita, a young mother with a three year son newly diagnosed with autism, became depressed after the diagnosis, but she dragged herself to a parent training unit for parents with autistic kids. With exposure to the possibilities of early intervention, she became aware of appropriate intervention that could slow the progress of autism. Anita devoted all her time and energies for her autistic child which boiled down to endless therapy sessions every day. Somewhere along the process, Anita ceased to be wife, daughter-in-law, sister-in-law, friend, and neighbor.
Interdependence between the child with ASD and the caregiver
Interdependence between the child with ASD and the caregiver changes as the child grows up. The young adult with ASD may resent constant supervision which had started earlier to prevent any social faux pas. Ridhan had a habit of tearing himself from his parent’s grip during his trip to school. This forced Aniruddho, his father, to clutch his son’s arm with an iron like grip. As he grew older, Ridhan’s self esteem dipped whenever his father held his arm on the way to school. Being non-verbal, he could not make his father understand that he would not dash off as he understood the perils of a busy road. With increased skill development of the child, family members need to be empowered with a wide repertoire of coping strategies. Arnab, an eleven-year-old verbal boy with autism, went to a mainstream school. When he was young Arnab used to like to listen to nursery rhymes and reciting them to anybody who cared to listen. As he grew up, the charm of nursery rhymes faded. But his mother, Sushmita, failed to understand that, and he had to go through the agony of hearing them twice every day, without fail. Even though verbal, he could not communicate to his mother that his interests had changed. Autism impairs the communication process and this causes hindrance and misunderstanding during the caring process. The difficulties of autism can lead to behaviors that are quite challenging to understand and address. Most individuals with autism display challenging behaviors of some sort as a result of the underlying conditions associated with autism. Challenging behaviors can often cause harm or damage, family and staff stress, isolation, and caregiver burnout. Aditi screams and covers her ears whenever an airplane is overhead – and she always hears them before anyone else. She screams other times too and it is hard to get her to stop. Debarun runs away and requires constant supervision. Aryan refuses to wear shoes and throws them at anyone who tries to get him to put them on. Aziz doesn’t like riding the bus, and bites his mom each day as it rolls up to the bus stop. Tenzing will only eat three types of foods and will refuse to try anything new. Shilmoni bangs herself in the head whenever someone tells her ‘no.’
Meltdowns: an integral part in the lives of care-givers of a person with autism
The meltdown is a common autistic characteristic feared and dreaded by both caregivers and autistics. While many children throw a tantrum when they want to have or do something that is being denied, people with autism experience meltdowns that can be scary, frustrating, and embarrassing. The care-giver who is supposed to be ‘in charge’ while a meltdown is occurring, may experience feelings of panic, hopelessness, and anger. A meltdown is ‘an intense response to overwhelming situations’, like a sensory overload leading to loss of control that may be expressed verbally (e.g. shouting, screaming, crying), physically (e.g. kicking, lashing out, biting) or in both ways. Meltdowns are an awful experience both for the child and care giver. Seeing the child suffer so badly can be heart-wrenching, and keeping them safe while it’s happening can be back-breaking.
Caregiver burnout and autism
The unique stressors apparent in raising a child with ASD are those of explosive behaviours or ‘meltdowns’, lack of socio-emotional reciprocity, repetitive actions, and restrictive interests. Caregiving for children with ASD is equipped with all the features of a chronic stress experience with high levels of unpredictability, uncontrollability, vigilance, and physical and psychological strain being major contributing factors. Madhumita, a mother in her thirties, goes through a harrowing time just to get her five-year-old ready for school. The physical strain is evident in the sweat, along with bruises on her thighs and pinch marks on her upper arms, while her lip is fat from a swift head butt. She experiences a wide variety of emotions daily, ranging from fury to sadness and helplessness. She struggles to sleep, relax, or rest as her mind is constantly on the child. These are all signs of care giver burnt out so common in care givers of autistic individuals and can have a detrimental effect on relationships.
Social reaction to the individual with ASD has a deep impact on the stress level of the care givers. Often the entire family is shunned because of the deficit in social skills of the child with ASD. They are not invited to social occasions or are treated in a negatively discriminating manner. Jayanti, a neuro-typical twelve-year-old girl has an eight-year-old autistic brother, Joy. She is pained whenever neighbours invite her to birthday parties and not her brother, who she loves dearly. She feels frustrated and hurt. She stopped going to parties where her brother was unwanted.
The “family” of an individual with disabilities often extends beyond those who are biologically related. For many parents and family members, autism support groups ease isolation, improve moods, and increase acceptance and understanding of the disorder. Often, just knowing that others are going through a similar experience can bring much needed relief and help to parents to cope with the physical and emotional challenges of raising an autistic child. Monalisa bonded with the other parents and over time they became more than relatives to her. With her new found friends, she initiated a playgroup where the children met weekly for play activities. They are now part of an extended support group for families with kids with autism. They regularly go out for picnics, tours and movies. Their group has created a small ‘autism friendly’ society with their own support systems.
Support systems for the care giver and care receiver
Given the considerable influence which this challenge has on family life, more attention needs to be paid to not only the child affected, but the family system as a whole. Offering parents and caregivers appropriate coping strategies, such as autism support groups, group counseling and other social support can impact the family system in a significant and positive manner. Care giving for a person with autism may be difficult but that does not negate that it has its own joys. Caring becomes an experience where both the care giver and care receiver share rich moments. Every family has a different story and so the family journey with an autistic individual is also different. The journey together may be different from the other neuro-typical families but fulfilling and unique.
Dr. Mitu De is an Assistant Professor in Botany. After the diagnosis of her son with ASD in 2009, she started learning about ASD by attending training programs at Autism Society West Bengal (ASWB). At present, she is a governing body member of ASWB and Head of Research & Academic Studies Unit of ASWB. She has been invited as a resource person for workshops and trainings in institutes for individuals with special needs.
For more stories, read Café Dissensus Everyday, the blog of Café Dissensus Magazine.