Understanding challenges of parents of children with Autism

By: Aishwarya Raj

Deficits in the areas of social behavior, communication, and repetitive behavior predispose children with autism to display challenging behaviors. That is, problem behavior may result from deficits in children’s ability to communicate their needs, desires, and preferences, or to know and respond to social cues and norms.

It is hard for a parent to realize that their child has a lifelong condition that is going to limit their socialization and their ability to experience life. The parents of the child are the most important component of raising an autistic child. Raising a child with autism is often challenging for parents, especially when a lot is not known about the condition. Furthermore, families with children with autism experience a spread of other difficulties that range from the affected individual’s challenging behaviors and health issues to factors that put a strain on the family, including providing for a child’s everyday needs, care, financial burden, and worrying about their future.

Parents often go through periods of denial or refusing to believe this is happening to their child while they mourn some of the hopes and dreams, they held for their child. Often, parents use denial as a way of coping, as they often find it overwhelming when their child demonstrates challenging behavior in public. Some of these include inappropriate touching, flapping hands, or spinning around, being fascinated with a particular item or extreme display of affection or anger.

 Parents may feel guilty, frustrated, confused, angry, or depressed. Frustration is the most common emotion. Parents may feel frustrated when their child is unresponsive, stubborn, angry, or clumsy. Frustration also arises when others around the child don’t understand how autism affects the child and end up judging both the child and the parents unfairly.  Another challenge for parents is to experience blame for poor parenting when the unaware or ignorant may blame a child’s meltdown or autistic behaviors on them. Often stigma – the negative social reactions and beliefs of others – increases stress for such parents. Stigma often leads to social isolation. A lot of parents report that they stopped going to events due to worries about their child’s behaviors and to avoid uncomfortable situations at social events.

Apart from stigma, other issues that can increase stress on parents include a child’s challenging behaviors, including hitting, picky or disruptive eating habits throwing things, poor sleeping head-banging, and other forms of self-injury, repetitive behaviors or tantrums.

When a child is diagnosed with autism parents also worry about how they will fair in life, how will the child cope up which makes them anxious as well. Often guilt feeling arises when parents blame themselves for the disorder leading to losing temper or getting angry at the child. Anger can also occur when the parents feel they are all alone in tending to the needs of their child with autism. They may get further angry with the child when the child’s behavior is hard to handle.

Apart from this, sadness and grief are also commonly seen amongst parents especially when parents learn that their child will not be able to experience life as other children do, there may be a sense of loss.

These can pose a mental health risk for the parents. Hence, it is important for parents to care for their needs along with that of their child. It is important to be aware of denial so that it does not hinder with making decisions about the child’s treatment.

Parents and caregivers of children with autism can be under tremendous stress. It may seem as if there is never enough time to do tasks that needs to be done. A lot of focus and attention is placed on the child with autism that it is sometimes common for parents to have less energy and time for their other children. Another important challenge experienced by parents is how to make other children understand the diagnosis of autism. Young siblings may not understand what is going on with their brother or sister. They may be confused about the implications of the diagnosis.

Siblings of children with autism frequently face their own challenges and they often need assistance in understanding the emotional reactions from their sibling with autism. This support and assistance are essential for their well-being.

Often there can be feelings of jealousy and resentment if the child observes that their parents are spending more time with their brother or sister with autism. They may consider it as unequal treatment if their brother or sister is not disciplined in the same way they are or given similar tasks to do. They may also report embarrassment in social settings where strangers are present along with their brother or sister with autism. Siblings secretly worry about their sibling with autism, their parents as everyone in a family is impacted by the disorder.

Sometimes children are unable to express their emotions and hence resort to “acting out”. Such as throwing tantrums, defying their parents.

Supporting parents of children with autism

Various studies, researches have shown that children who are suffering from autism are able to live normal lives to some extent. These children usually don’t have a broad range of interest in activities and will more than likely select only a few activities and only accept those in their lives.

The first step should be early identification and offering support to develop. This support can come from family, friends, school, occupational therapy center, etc. As a parent, the most crucial thing is to understand and find what helps the child best and stick with that.

If your child has autism is important to get support. The everyday activities of children with autism can be stressful. Apart from this making sure that your child gets the help they need can also be challenging, depending on support services that can be accessed in your area.  Look out for local parent groups, organizations working specifically for children with autism. Often during such times, one is likely to have ongoing worries about the child’s prognosis and long-term well-being. Hence, it is important to take care of yourself, as well as your child.

While taking care of your child with autism focus on the positive. It has been shown in research that children with autism often respond well to positive reinforcement, implying when you praise them for the behaviors they’re doing well, it will make them repeat the desired behavior more often. It is very important to be specific so that the child knows what you liked about their behavior. This can be done by simple gestures such as rewarding them with extra playtime or stickers.

It is important to educate oneself. Learning and reading about children with autism can help you picture an intervention plan for the child. Consulting with governmental and nonprofit organizations for more information on children with autism can also help.

Taking care of a child with autism can be overwhelming usually it leaves no time for self and the spouse. It is important to make time for yourself and your spouse. Try to schedule regular outings with your partner and friends. If you or your spouse are persistently feeling overwhelmed or depressed, or the stress of caring for a child with autism is affecting your relationship, seek professional help.

Giving it time. As you progress on the journey with your child with autism you are likely to try different techniques, approaches, and treatments so as to find what suits them best to your child with special needs. It is important to stay positive and try not to get discouraged if the child doesn’t respond well to a particular method.

Involve the child with autism in everyday activities. If the child’s behavior is unpredictable it may be advisable to not expose them to certain situations. However, involvement in everyday activities can help them get used to the people around them.

For supporting your other children, it is important that children understand autism and how it impacts their brother or sister. Start with having a conversation with children early and in age-appropriate ways. Assist your children in forming a relationship through play or common activities. It is good to teach your other children on how to get their sibling’s attention and give simple instructions. It is also important to praise or reward all your children when they play well together.

There are a number of parenting strategies for the parents of a child with autism and although it’s among the most laborious tasks, it’s also probably the most rewarding of all things one could ever do. Focusing on the present and practicing acceptance can help. Parents who accept where their child is today seem to do better as unlike some other developmental disabilities, autism has its own set of recovery stories too. The focus should be to celebrate each achievement and developmental gain as it occurs rather than the ultimate outcome of where the child needs to be. It is important to also think about how we are going to integrate these children into our society.

Aishwarya Raj
Clinical Psychologist Student Wellness Centre, AIIMS
New Delhi

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