Caring For A Child With Autism

Keywords:

Autism, caregiver, tantrum, meltdown, resilience, positive coping, problem focus coping, positive emotional coping, positive reappraisal, social support, religious coping, negative coping, burnout, stigmatization.

Introduction.

Caring For A Child With Autism. What is autism? How does autism present in children? The good, the bad and the ugly of caring for children with autism.

What is autism?

Autism is one of the neurodevelopmental disorders that start in childhood. By being a developmental disorder, it means that the problem or deficit begins at the child’s developmental period.

The problems in autism affect communication and social interactions which starts quite early in the developmental period of the child. These problems the children have, can be noticed at different areas of their functioning, at home, at school, etc.

Even though these issues start quite early in life, they may not be noticed by the parents or caregivers. And the baby may seem to be developing normally, until the toddler ages of between 2 years to 3 years.

How does autism present in children?

Autism has 3 levels that it can present in children. These are levels 1, 2 and 3. The level 3 being the most challenging presentation.

Problems with communication:

Since autism is a problem with communication, these children have problems with speech. While some can speak, although with limited capacity, others cannot speak at all.

Children with level 3 autism presentation, cannot speak at all, but even when they do speak the words are not understood.  Those with level 2 presentation, can only make simple sentences. And those with level 1 type, can speak.

Social behavior issues:

They also have problems with social interactions or behaviours. Thus, have limited ways to play or interact with their mothers, caregivers and other children.

They often throw tantrums when they cannot cope with sudden change in routine.

Tantrums –

Tantrums are goal oriented behaviours which children use to seek attention or to express frustration. This means that they are behaviours which the child voluntarily initiates and can control.

And tantrums can present in so many ways that include, screaming, crying, head banging, breath holding and kicking. They also include excessive scratching, hair pulling, hand biting, face slapping, throwing objects and damaging things, etc.

Meltdowns –

Apart from exhibiting tantrums, these children can go into a meltdown. A meltdown is an extreme form of a tantrum which occurs involuntarily. Meltdowns are also self-harming behaviours and they last longer than tantrums.

Causes of tantrums and melt downs –

Apart from being exposed to sudden change in routine, other things can bring about tantrums and meltdowns. These include, being exposed to unfamiliar environments, overexposure or under exposure to noise, light and even touch.

Other things like being anxious, frustrated, anger and being ill, can precipitate a tantrum.

All these are due to the difficulties they have in expressing themselves, because they are over bombarded with information.

Other forms of social behavior –

Children with autism prefer playing alone than playing with other children. And they like spinning around, switching on and off lights and they walk on their toes.

There are other behavior such as being picky with meals. They can be very selective with meals so that meal times may end up being problematic. They prefer sweet sugary foods and don’t like fruits and vegetables.

The good, the bad and the ugly of caring for children with autism.

The job of caregiving to most children living with autism, usually falls on the mother. And caring for such a child comes with a lot of challenges. The caregiver has to look into various aspects of the child’s life, such as the educational, medical, psychological and behavioural. Apart from looking into these mentioned aspects, she has to also take care of herself. And these include her psychological, social, medical, and financial wellbeing. All these come together to make up for what is called the caregiver’s burden.  

Some caregivers may not be family members, and this actually can reduce the caregiver’s burden. But when the caregiver is actually a family member, this helps to make the caregiving more consistent throughout the life.

The good or rewarding aspects from caring for a child with autism:

Mothers as caregivers must first accept the condition of their children. They have to accept that they have a special need child that requires special attention.

When the caregiver adopts adaptive coping strategy methods and receives social support, the caregiving can become quite rewarding. Social support from family members, friends and teachers, help the mothers to navigate caregiving effectively.

Mothers require a supportive network of people who feel and understand their pains. And sharing responsibilities is very important.

Improves resilience –

Caregivers of children with autism, usually develop resilience which helps them to use the adaptive coping strategy. Resilience is the ability to navigate stressful situations and bounce back to physically and mentally. One way to improve resilience is for the caregiver to get more knowledge concerning autism.

This helps them manage challenges which confronts them as the care for these children.

It increases positive coping –

Caring for children with autism, helps the caregiver see the positive side of the experiences. This can only be done when the caregiver adapts positive coping methods. It also helps the caregiver to look out for social support.

These positive coping skills are known as adaptive coping strategies.

Adaptive coping strategies.

There are different types of adaptive or positive coping methods.

Problem focused coping.

This is an adaptive coping strategy. Here, the caregiver focuses of identifying a particular problem, and find out the root cause of it. Then develops a solution to take care of it.

For example, tantrums. What the caregiver should do, is to find out the causes or risk factors to the child going into tantrums. Once this is done, the caregiver will develop a way or ways to prevent or handle the tantrum when it occurs.

Problem focused coping strategies are tailored to individual issues. And acquiring information, will be of great help plan solutions. Also getting adequate social support will help.  

For example, if the child is having a melt down and jumping up and down. You as the caregiver, need to stay alert and remain with the child. This is not the time to say too many words to the child, because they cannot concentrate. It is also not a time to scold the child and remove comfort objects. So use a few words to show the child reassurance. 

Then, you can be jumping the child, or give the child space to calm down. There is no single way to handle such a child, just find what works for you.

Stay present with the child until the whole process of melt down is over and the child is calm. Allow the child to relax. Be empathic and help the child know that you are there to help. Then create a safe environment for the child. This can be done by hugging him or her, or doing something that can show comfort to the child.

Once the child feels safe, you can talk over what just happened. The child can tell you what brought it about and what can be done, if the child is verbal. Learning sign language, can also help you communicate effectively with your child.

Positive emotional coping.

Emotional coping can be positive and negative. Here are some positive emotional coping.

Accept your situation of having a child with autism. See the whole process as a learning process for you. And see yourself as someone who can be of help to other parents who are facing the same challenge as you.

Loving and accepting your child the way he is, becomes a coping strategy. Although it may take some time for you to reach this stage, but it is possible.

Positive reappraisal.

In this method, learn to appreciate your child when he helps in the house or to do things.

Another form of positive reappraisal, is to allow your child to mix with other people who have autism. This will help your child learn that she is not alone in his or her condition. Also allowing them to mix with children who don’t have autism, allows them to learn behaviours. Then taking your child out to public places will also help.

All these help to instill hope in the child and helps improve their behavior.

Creating a well-structured routine.

When the caregiver creates a daily well-structured routine, it goes a long way to reduce her stress and that of the child. It is important to know that children with autism do not like change. Making sudden change can bring up a tantrum. If there is need to make any sudden change, the child is informed ahead of time.

For example, children with autism prefer to follow a particular road or route when going out. Any change can bring up a tantrum.

Following a well-structured daily routine helps keep the child calm.

Religious coping.

Another positive coping is finding comfort by worshiping God. Seeing God as a Supreme Being, who is ready to help in your problems, helps to reduce stress. Believing that God gave you the child for a purpose, gives relief.

Active coping.

These are some ways to help reduce your child’s stressors when he or she is outside the home. When these children are outside the home, they face a lot of stigma. People call them names, and make fun of their behaviours.

As a parent, it is important that you do your best to reduce the stress that your child faces outside. Find ways to communicate with your neighbours, letting them that you have a child with special needs. Let them know some of the ways that they can help so as not to escalate his or her stress.

In school, let the teachers know about your child’s challenges and how they and the students can be of help. You can let the teachers know some of the words that he uses and their meaning.

In all these, what you are doing is to adjust the environment to suit the needs of your child.

Join a peer group.

There is need to join a peer support group. This group is made up of parents who have children living with autism.

Such a support group will help parents share in their challenges and share the coping strategies.

But unfortunately, in many places, such support groups do not exist.

Social emotional support.

This is very important, as it has been written about earlier. The social support need to come from spouses, siblings, extended family members, and family friends. Social support can also come from church groups. These people can help in caregiving responsibilities. For this reason, it is important that the nuclear and extended family members, maintain close bonds.

Some of these people are people the caregiver should easily go to when she needs to talk. They can give advice or solve the problem.

With people who are ready to help, it is important that the caregiver, spends time alone to care for herself. She should have time to listen to music, take herself out or go out with friends. Doing things that she just loves, will help to reduce burnout.

So have a good self-care and prioritizing your health, is very important.

Professional counselling.

As a caregiver, it is important that you get professional help from professional counsellors. This will include help from a clinical psychologist.

If your child is schooling in a special school, getting information from the teachers there, will be quite helpful.

In general, all these positive copings, will help the caregiver or parents to have good interactions with the child. These positive coping mechanisms, helps the caregiver overcome many of the stressors and adjust to the situation.

Medical treatment –

It is important that the child with autism, gets good medical treatment.

Treatment can come from a pediatrician, a clinical psychologist and a psychiatrist. These group of professionals should be available to manage the health challenges of your child.

Giving your child prompt medical treatment when he or she is sick, is very important. It can go a long way to reduce the stress faced by the child and caregiver.

Other therapist –

There are other therapists that the child requires. These are the speech therapist, social workers, etc.

The bad aspects of caregiving:

Caring for a child or children with autism, is very challenging. In some families, there could be 2 to 3 children living with autism.

This will put in a lot of strain on the entire family. Apart from all the difficult presentation of behaviours children with autism manifest, they are also picky eaters.

They are very choosy when it comes to eating, because they prefer sugary and sweet foods. And this can present a physical health challenge to the child, who can become obese.

All these can be quite overwhelming for the caregiver parent(s) and the entire family.

Negative coping method –

Due to all these challenges the caregiver faces, she may adopt the negative coping strategies. These include negative emotional coping and passive avoidance coping. These are negative or wrong coping that can worsen the stressors on the caregiver and the child.  

Actually, when parents are given the diagnosis that their child has autism, their first response is usually denial. They refuse to accept the diagnosis. This denial puts the parents, into an emotional turmoil.

The parents do a lot of crying and end up with anger issues. And they see the diagnosis on a negative light. Some of these parents may end up blaming themselves for the entire problem. This can cause the parents to having low self-esteem.

These parents end up overprotecting the child and isolating the child from people. This will keep the child from developing properly. 

To control the child’s behavior, such parents resort to physical and verbal abuse. With such methods the child can be beaten, flogged, kicked in order to discipline him or her. The child can be called all sorts of bad names. The child can even be denied food, medical care or be made homeless and abandoned. These are harmful to the child’s development and they are of course ineffective in managing behaviors.

Development of mental and physical health issues –

All of these will put a huge challenge on the mental health of the caregiver. Thus, the caregiver can be predisposed to mental illnesses such as depression, anxiety, sleep deprivation, substance abuse, etc.

She also faces poor physical health such as hypertension, diabetes, stroke, etc. These are stress related illnesses.

Most often, taking care of her child, doesn’t give her time to care for herself, both physically and mentally.

The ugly aspect of caregiving:

Burnout –  

This is involves physical, emotional and mental exhaustion caused by excessive long standing stress. They experience high level burnout.

Burnouts experienced by people who care for children comes from the fact that they are faced with chronic stress from the child. They are also faced with the inability to get support from people, and financial issues. And it is more probable, the caregiver makes use negative coping skills. All these leads to their inability to get timeout for themselves.

This burnout is a psychosocial issue that comes with emotional tiredness, not caring about anything and not feeling accomplished. These are due to work overload, excessive role demand and the inability to fulfill the roles.

The caregivers lose their abilities to even take care of themselves and they withdraw from associating with people. This predisposes them to poor mental health and inability to care for the children. Some may have suicidal tendencies.

Economic challenge –

Financing the care for the health challenges of such children is quite tasking.

Then because most often, mothers are the caregivers, it puts a big strain on the mother’s job outside the home. And many a times, she ends up losing her job. This will put more strain on the family income, which could lead the family into low socioeconomic state.

Relationship strains –

Caring for such children, puts a huge strain on the family relationship. It can bring about intimate partner violence and even divorce. The other children in the home will feel neglected, because the parental attention is going more to this child. It is difficult for the mother, to balance the love in her family, when she has such a child.

Stigmatization –  

The extended family in some case, ostracize the family that has a child with autism. This could be because they believe that autism is a spiritual matter.  And for this same reason, in many occasions, the family are stigmatized by the community members.

These lead to emotional distress that negatively affect their mental health. These mental health effects include depression and anxiety.

Early death –

The mother, who most often is the caregiver, is at risk of early death. This could be more probable when she doesn’t make use of the positive coping methods. It can also come about when she has no social support.

This risk for early death can be due to psychological, psychiatric and physical health issues, as mentioned in earlier.