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Tantangan dari Keluarga Besar Anak dengan Autisme

Challenges from Large Families of Children with Autism

Parenting children with Autism certainly provides challenges for parents. Apart from having to build good communication and share roles, it is common for parents to be faced with various questions, responses, and comments from all around them, including from their extended family. Then, how should parents address this as a daily thing?

Table of Contents

Facing Large Families: Responses, Challenges, and Understanding that Must Be Given

1. Parental Communication is the Foundation

Father: "I'm tired of working all day, you are comfortable just being at home and taking care of the children"

Mother:"I'm trying so hard to understand and take care of my children. You feel good when you can be outside all day without pressure."

Parents are often faced with conditions like the one above. Fathers and mothers will always try to provide the best for their children, but they cannot always go hand in hand. Conflicts often start from assumptions that arise about "already doing their respective tasks," which over time become calculations with each other. What must be invested is no one does//works more, everyone tries their best and must help each other. Perceptions and principles as parents must be the fruit of the mind of the father and mother as a unit so that later they can minimize debate and contra and not go in opposite directions or be busy walking separately.

Therefore, it is true that building communication through discussion is the main foundation for uniting thoughts. Sometimes, in finding a middle way between pros and cons, you must go through it first, like the exciting quote below.

~ Ego with ego must meet so that we can know what is expected by the partner and what we expect from the partner ~

2. Family = Teamwork 


Accepting a child's condition with their diagnosis feels like a roller coaster ride. Parents have to deal with the various impacts and mixed feelings within them. Moreover, the burden on the father and mother as parents with their respective roles also put a certain pressure on a father who has to earn a living and a mother who also has to care for the house and vice versa. Internal conflicts between fathers and mothers may occur because of a lack of time to convey complaints and equate perceptions of one another. Suppose this condition is not resolved, and there is an internal conflict between parenting and the relationship between father and mother. In that case, this will affect the daily care of children.

This may sound cliche, but with the existence of a foundation through communication and unification of perceptions, it can bring strength so that everything can be faced and gone through together. The paradigm that was built initially "one-sided" will turn into a saying that we often hear,"berat sama dipikul, ringan sama dijinjing”The mother is a compass for direction, while the father is the skipper. As social beings, individuals do need other individuals. It's as simple as dividing tasks to "learn" to understand children. When Mother read theories A, B, and C, Dad took part in ideas D, E, and F. On merits the process of continuing to build and work together as a team.

3. Parenting  is A Lifetime Challenge 


Parenting a child with autism is a journey full of challenges. The journey will not be able to be passed from one point to another if the father and mother do not develop and try to move together. When you want to care for and make children happy, the parents should feel that happiness first. Like control, parents must understand what is needed and felt. So the question often arises.Have I accepted my child as they are?”. Therefore, parents can apply three simple things:  

  • First, aware of the current conditions. Be aware of every process, child development, and moments of togetherness with children. 
  • Second, enjoy all the good that can be tasted, even if it's just a little and it's hard to feel.
  • Third, appreciate. Appreciate yourself for doing your best and giving as much effort as possible to your child. If the child shows progress, also give appreciation and show love to the child (by hugging, smiling warmly, and kissing). 

Acceptance is a process that goes on every day. Even though the result is the primary goal, we must enjoy and appreciate the process passed together. Thus, every process will be meaningful, and parents will always realize that every effort made is the best thing children have.

4. Environment Cycle

The condition of autism and all its characteristics often attract the attention of the environment, both from extended family, friends, and neighbors. Sometimes many people try to provide information and feedback and even share certain expectations for children's development. The information provided plays a role in helping support the development of children. Still, it is common for parents to become overwhelmed with the knowledge and pressure they receive. Then, how should you as a parent, deal with this situation?

There are several tips that parents can apply to embrace large families, including:

Edukasi Secara Singkat

Give an outline or bullet points related to the knowledge of children with autism. You can add data according to the child's condition. For example, a child belongs to nonverbal autism. Families can be described with data support such as "Most children with autism are nonverbal autism, so they have more difficulty or need more time to speak. Not a few of these children, until they grow up, still do not have the ability to speak, but they can still communicate.", and so on (which is adjusted to the child's condition). 

Of course, this explanation must be given more than once or twice. Give opportunity and time to family or relatives to digest, and understand until finally receiving the information. Repeat information if needed, or allow them to ask questions.

Manage Expectation 

Every family member or closest person must have high expectations of children. Not infrequently also compared with other children. High expectations can occur because families and other external parties do not fully understand the description of parents and children with special needs. They can't imagine how the children's daily conditions, the feelings of parents, or the efforts needed to help children develop. The thing that needs to be emphasized is that children with special needs require special attention and support as well, and of course, it will show a difference compared to children's development in general. The expectations given are usually also available in nature, such as the hope that children can communicate, understand other people's intentions, or do things like other children in general. Even though behind that, many small and detailed things are difficult to explain verbally and often challenging to see with the naked eye. 

Therefore, as parents with special children, we must again remind ourselves that we, as parents are the captains. As parents, we have a part to play in equating outside expectations with our own by communicating them to our families. Thus, other people's expectations will not be greater than parents' expectations of children, and they can celebrate our children's progress, no matter how small.

5. Make and Know Your Own Circle 

circle of influence

One of the challenges for parents in everyday life is when children are invited to travel, meet relatives, go to public places, or specific events. Questions or spontaneous responses from the environment are sometimes difficult to avoid and answer. Not infrequently, the reaction from the surrounding atmosphere also tends to hurt feelings. So, parents must first prepare themselves to deal with unexpected conditions. By recognizing our environment first, preparation can be done by making a circle analogy.  

~ The meaning of the circle is anyone that we can still invite to expect children and anyone we are ready to disappoint. ~

Basically, we cannot ensure that everyone's hopes and expectations for our children are met. Therefore, we must be able to arrange the circle of closest people first. For examples:

  • First Circle: Wife/Husband
  • Second Circle: Children and siblings
  • Third Circle: Parents (grandfather and grandmother)
  • Fourth Circle: Other familiies (uncle/aunt/cousin
  • Fifth Circle: Distant family 
  • Sixth Circle: Friends/Neighbours/close acquintance 
  • Et cetera

In determining who is in the first to sixth circle, it does not have to be according to closeness based on blood ties, because figures who are considered important or influential in an individual's life can come from primary groups including immediate family and romantic partners, to secondary groups that are broader and formal in nature. such as friends and other relations.

Sometimes parents who are caring for children with autism are overwhelmed with all the information about parenting and the various targets they want to achieve with their children. Furthermore, every day parents must try everything from school, therapy, additional treatment, and others to facilitate optimal development for children. As family or the closest person, being a listener is the best support we can give. Listening without refutation, listening without judgement, listening without including personal views. 

To all the great parents out there, who are struggling together, remember that we must try to get out of the box must please other people, must ensure that other people are happy with the condition of our children, or other people are comfortable with our children. Start focusing on the most important and foremost thing, namely the development of our children and our happiness as great and cool individuals and parents! 

Last but not least, for family, friends, and relations from parents with children with autism, there are small but meaningful quotes for us.

~ Try to understand that parents (of children with Autism) surely know and understand more about their child's condition; understand and realize that the effort given by parents is more significant than anyone; and understand that parents' expectations of children must be greater than anyone's expectations in this world ~


Source:  MPATI Family Stories Webinar: Children with Autism in Large Families and Their Challenges, How to Provide Understanding to Families.

Source person: The Bold Parents

Writer: Vidary Wiakta Putri, Mahasiswa Psikologi

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