Effects of autism on the family are terrible considering the different behavioral problems of the autistic children. Autism can completely change the lifestyle of a family.
A family, having an autistic child, cannot run in its own course as per plan of the family members. The autism angel dictates the ways of living for the whole family. Most of the family members have to be involved with the autistic child.
Every parent expects a child in their life and they consider it as a special gift from the Almighty to make their life successful. After the birth of a child, there is enormous happiness in the family and the parents start dreaming big about their child. But the happiness starts diminishing when the child cannot achieve different developmental milestones as per schedule. When the baby is diagnosed as a child with autism, their entire future plans become naught.
The parents of the autistic children start feeling the different effects of autism like mental, physical, social and financial effects on the family members. The mental conditions of the family members become shattered. Gradually, they withdraw themselves from the association of the relatives, friends, and neighbors in the society and the family becomes self-centered.
It is very difficult to make people understand how much difficult it is to sustain the different effects of autism and pass the autism life. However, in this article, I am going to narrate some of the terrible effects of autism on a family in light of my long experience of living with autism for more than two decades.
Effects of Autism on the Psychology of the Parents
When a child is diagnosed as autistic, it becomes very difficult for the parents to accept it assuming its consequence. Initially, they cannot think that their child will remain merely childish and dependent upon them throughout the life.
The parents become almost mad thinking that their dearest baby’s life has no value to the society. Sometimes they hope that s/he might be alright when s/he will be grown up. But ultimately, when they see that there is not that much development in him/her, they just leave their hope and become frustrated. They consider themselves worthless and find the life as meaningless.
The parents start thinking who will look after their autism angel and what will happen to him/her in absence of them. It has been seen that the mother in the family is mostly affected in this situation. She becomes absent-minded and helpless in the home as well as workplace and sometimes become a psychiatric patient. The effects of autism are comparatively less on the mental state of the father in comparison to the mother as he remains busy with his professional job.
Till now, I was talking about the effects of autism on the mental state of different parents of the autistic children in general. Now, I want to express our own mental state when we came to know that our only son Mahi was affected with autism. My autism angel was 4 years old when he was diagnosed as autistic. At that time we could not believe that our only son would not be able to be self-dependent throughout his life. By this time we have been experiencing all types of effects of autism through our autism angel.
Now my autism angel is 21 years old and my friend’s son of the same age is driving a car and piloting aircraft independently. But my child cannot ride the school bus alone. Me or my wife has to go with him to the bus stand at a distance of only 100 meters to avail the school bus. This is the reality of an autism life.
Financial impact of autism on the family
Most of the autistic children become unproductive and a lifetime burden for the family. In addition, the parents have to spend a handsome amount of money regularly for the healthcare, treatment, special education, training, and therapies of their autism angel. A study reveals that the health care cost of an individual with autism is 45% higher than the non-autistic individual.
The autism family has to incur enormous financial losses in various ways (both tangible & intangible) which can be categorized in the following forms:
The expenditures related to diagnosis, treatment, special schooling, training, and therapies of the autism individual which can be quantified.
The cost related to the value of lost leisure and employment time, and lost income are the losses that can not be quantified.
The cost related to the stress of the parents, disruption of family life and reduced time with other family members are also some kinds of financial losses.
The parents in the developed countries have to pay the costs associated with the established social service, education and medical sectors for the autistic children in higher rates than the developing countries. It may be mentioned that most of the developing countries do not have such services for the autistic children. However, the developed countries provide some financial assistance to the autism family in the form of Medicaid Program and health insurance which is not enough to the requirement.
A child with autism needs almost full-time attendance by the parents; either father or mother. So, both the father and mother of an autistic child cannot do the job at a time. Either of them has to leave their job for the betterment of their autism angel and in that case, the mother’s turn comes ahead. She had to either cut the work hours or leave the job. Most of the cases, she has to leave the job as looking after an autistic child is a full-time work.
Hence the monthly income of the family is reduced but the overall family expenditure increases as the tuition fees and the fees for therapies of the autistic children are very high. Under the circumstances, misunderstanding starts between the father and mother of the autism angel. The parents start blaming each other. Sometimes, it is ended with a serious consequence like the divorce between them. This is the terrible effects of autism on a family.
Effects of Autism on the Siblings
Generally, the siblings have very strong bondage in the smaller families. But the effects of autism on the sibling are not less. They can share their all joys and sorrows with each other living in the same home. But, if one of them is autistic, then both of them are deprived of that facility.
Similarly, my only daughter and the only son are deprived of that facility due to the effects of autism as my only son is an autistic. Yet, my autism angel has only one person in the world to share something in his life that is his sister. My son, Mahi has learned the beautiful artworks mostly from his sister as her artworks are also excellent. You can see below two artworks of my daughter.
Effects of autism on the siblings start from the home and extend to her personal and social life. There are some situations of pain for the sibling if s/he finds that some of his/her friends are laughing at the autistic behavior of his/her brother/sister. S/he can not tolerate it or can not tell anything to his/her friends. In this way, s/he becomes humiliated to of his/her friends.
Generally, teenage boys and girls laughed at the autistic children when they see that a boy or girl of their age is doing abnormal behavior which is not to be done by a boy/ girl of that age. The sibling of the autistic child does not feel comfortable in it and it imparts a major impact in his/her mind. There are also some other social scenarios which irritate the siblings of the autism angel in every step.
The sibling has to sacrifice many things for the autistic brother/sister. For example, an autistic baby starts shouting or crying for the whole night before the examination day. Then what happens, to the study of the sibling. Is it not hampered seriously. Can s/he appear in the examination properly?
My daughter and the autism angel Mahi used to live in one room. Mahi has a serious sleeping problem like most of the autistic children. He remains awake until 2-3 am at night. My daughter had to remain awake for him till he goes to sleep.
Even the night before the exam night was not an exception to it. So, it had serious effects on the study of my daughter. But my daughter is such affectionate to his brother that she never accepts any complaint against him. She loves the autism angel so much that she never likes any maltreatment by anybody to him.
Effects of Autism on the Safety & Security of the Family Members
I have discussed in the other article about the destructive behaviors of the autistic children. Some of the autistic children injure themselves or others which are very dangerous for the family. Sometimes, they become so desperate that they lose their sense and attack anybody. Now I will refer few incidents of the developed countries regarding safety and security of the family members. It is indeed a matter of concern that sometimes the autistic children can bring difficult problems for the family.
Recently, a northern Ontario family was desperately searching for help after their severely autistic, nonverbal teenage (15 years) daughter, Robyn Webster, injured herself seriously (CBC News, Canada). Referring to her mother, the news said that Robyn was diagnosed with autism at the age of 18 months and started to self-harm when she turned 11. She lost her vision of right eye due to self-injury and sometimes became aggressive to her parents and hurting them. Her parents did not feel safe of their family if Robyn was living in the home. The parents of that girl decided not to allow her to come to their home and searched for help.
In another incident, a boy child of a family in the state of Missouri was diagnosed as an autistic child at the age of one year (as per a report from the KMOV.com). After that, gradually he started to show aggressive behavior towards himself and others. When he was 3-4 years old he broke a TV remote over his sister’s head and she was injured. Breaking bones & fingers and tearing eye retinas by the autism boy were the daily occurrence of the family.
Frequently they had to call the police to stop him. Now he is 14 years old. They said that if the state would not help them then one of the family members will die. Finally, they have called the state and voluntarily gave up custody of their son as they were concerned about their survival. Now they might have to face the charge of leaving their boy as he is yet to reach 18 years of age.
My autistic boy sometimes becomes so aggressive and furious that he used to attack his mother and sister if something is not as per his desire. He used to tweak them with fingernails and injure them to bleeding. Since he is a young and very energetic boy, nobody can resist him. This is the dark side of my autism angel. It happens in most of the houses of autism family. There are lots of untold incidents that are never disclosed by the mothers of the autistic children.
Effects of Autism on the Social Life of the Parents
The parents of the autistic children, especially in the developing countries, have the tendency to hide the problem of autism because of the society. Since long, there is a misconception in the community that the child with any kind of disorder has been bewitched or cursed due to some faults of the parents. So, they used to hide their autistic child in the fear of public disgrace.
The autistic children are not taken in the positive spirit by the relatives and the neighbors. Even, sometimes they are neglected by their parents and do not get proper care in their early life. Some of the fanatic parents think that the problem is given by the Almighty so HE will look after the child.
In the big family having 5-6 children, the autistic children remain neglected throughout their life. One of the reasons is poverty and the other one is awareness. The parents consider it as wastage of money and labor investing in the autism child. Rather they want to spend money for the development of the of their normal children.
The autistic children, in these families, are looked after by the maidservant or to the caregiver. They are considered as a burden for the parent and burden for the society from the day s/he is identified as the autistic child.
The close relatives of the parents of autistic child have mixed reaction when they come to know the child is autistic. Some of the closest relatives understand the mental condition of the parents and they become sympathetic to them. But most of them try to avoid.
Some of the dedicated relatives try to stand beside the victim but they have hardly anything to do for the betterment of the children. They provide the moral support to the parents which are also very important.
Though we (me & my wife) are educated and conscious citizen of the society, yet we made delay to identify the autism in our angel. As we know it prevails in a child at the age between 3-6 years but we thought it might be a delayed milestone.
Examples of the Effects of Autism on Social life
My autism angel was very reckless in his early life. It was very difficult to control him. He would not stand in one place for few seconds even. Here I want to explain some of the incidents which left us in an awkward situation for time being.
One day we went for a site visit in Saint Martin Island along with the whole family. We were walking at the sea-beach. Generally, when we used to go out I would hold the hand of our autism angel tightly so that he cannot go far away escaping us.
When we were walking along the beach, suddenly he escaped from my hand and snatched a bottle of coke from a man sitting nearby. The stranger was drinking a bottle of coke sitting beside the beach and at a distance from us. The man became astonished at the incident.
When our autism Angel was 3 years old, we went to visit a friend’s house. That was our first visit to that house. We were gossiping in the living room, and all on a sudden he jumped over the table in front of us. The table top was made of glass and it was broken into pieces.
We became surprised and speechless for the unexpected incident. The table was very fancy and precious and was imported from abroad as a set with the sofa. It was very difficult to get its replacement. I was so ashamed that I never visited that house anymore.
In his early life, my autism angel had another peculiar bad habit which would really a matter of embarrassment for us. When some guest was coming to our home, he used to take his mobile phone silently and just drown it in the bucket of water. This used to happen frequently.
At present, our autism angel Ferdous Mahi has the sleep problem. Sometimes, at the mid-night, he starts shouting at the top of his voice which makes a nuisance in the society. The neighbors awaken being disturbed and we become ashamed but nothing can be done.
The child is considered as the main asset of the family but if the child is autistic then s/he becomes the liability for the family in the present context. The parents do everything for the betterment of their children sacrificing their own happiness. But when they find out that their child is diagnosed with autism and thereby incapable of maintaining his/her life, they become frustrated.
Autism has tremendous effects on the family members of the autistic children. It can be physical, mental, social and financial. All these effects have equal impact on the family. The family becomes mentally shattered, socially isolated and financially disturbed due to these effects of autism. The family members sometimes, become helpless regarding the safety and security of the family members.
They always think what will happen to their child in absence of them as there is no rehabilitation program for such autism children in the developing countries. Though the autism angels in the developed countries, get some kinds of financial support from the governments but not sufficient to the requirement.
Under the circumstances, all parents of the autism angels of the world would try to make all out effort to support their children to make them self-dependent. If s/he is unable to be self-dependent then the government should take the full responsibility of the autism children for their entire life so the families are not affected much.
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