Challenges facing parents of children diagnosed with autism spectrum disorder
By Adel Bashir, Anjem Bashir, Chaste color, Ahmed flowers
Translated by A. Survival of Ramadan
introduction:
Autism spectrum disorder is a neurodevelopmental disorder, Involves challenges with social interaction, speech, nonverbal communication, and repetitive restricted behaviors, Difficulty moving from one activity to another.
Linguistically, some children diagnosed with ASD may have good language skills but are unable to use them to communicate with others effectively. Others may suffer from severe weakness in language skills, in addition to weak social communication skills, which prevent them from participating with their peers in many activities, such as pretend play or initiating simple conversations with others.
Symptoms of autism spectrum disorder also appear during the first three years of a child’s life, after which a diagnosis is made based on these symptoms. When a child is diagnosed with autism spectrum disorder, It is diagnosed based on a comprehensive evaluation that includes clinical observation, Indirect evaluation by interviewing parents, Psychological and linguistic tests and some other fixed standards.
The Diagnostic and Statistical Manual of Mental Disorders (DSM-5) contains the latest and most accurate diagnostic criteria, Autism spectrum disorder is also classified as a comprehensive developmental disorder. In the Diagnostic Manual (DSM-5), symptoms of an autism spectrum disorder diagnosis must appear during the early childhood stage of a child’s life. Even if those symptoms were not recognized at the time. It also allows children over school age who suffer from disorders related to autism spectrum disorders and did not receive a diagnosis at the time of symptoms.
Autism spectrum disorder:
Research suggests that both genetics and environment play a role in children being diagnosed with autism spectrum disorder. As for Greif Walt (2010), commenting on the behavioral problems caused by autism spectrum disorder, he says that they represent a family and social challenge for parents as soon as they learn that their child has been diagnosed with autism spectrum disorder.
Parents’ anxiety when a child is diagnosed with autism spectrum disorder
It is very normal for parents to experience anxiety and stress when their child is diagnosed with autism spectrum disorder. The rate of anxiety increases proportionally to the increase in the severity of autism spectrum disorder symptoms. Anxiety may directly affect and reflect on the child’s cognitive, behavioral and social development.
Despite the many developmental disabilities, However, the diagnosis of autism spectrum disorder has a different impact for several reasons:
Firstly, There are no clear vital signs indicating the presence of autism spectrum disorder.
secondly, Autism spectrum disorder has a direct impact on the decline in the individual’s social life and the formation of relationships, which is reflected in the entire quality of the family’s life.
Finally, Autism spectrum disorder coincides with some accompanying symptoms such as distraction, intellectual delay, The emergence of inappropriate behaviors.
All of these factors may make parents feel a loss of control and feelings of frustration and anxiety, and may lead to parents being diagnosed with depression in some cases. Gupta and Singhal 2005 state that the symptoms of shock differ from one family to another when a child with developmental disorders is born. Some of them feel a loss of faith, extreme sadness, depression and guilt. While others feel stressed, angry and helpless.
In a study conducted by (Prince 2007) on the causes of anxiety among families, including:
Concern about the persistence of the child’s condition in the absence of appropriate intervention for autism spectrum disorder, Inappropriate behaviors that may limit society’s acceptance of him, Decreased social support needed by families.
Korkutas (2012) also added that mothers are more stressed than fathers. They have higher rates of stress, emotions, and depression than their fathers. He also pointed out that the rate of depression increases when a child is diagnosed with autism spectrum disorder, It may decrease significantly over time.
Raising a child with autism spectrum disorder
A diagnosis of autism spectrum disorder may be accompanied by severe symptoms that may haunt the individual for life if appropriate intervention is not taken. These symptoms do not only affect the individual, Rather, its impact may extend to the people.
Parents face extreme difficulty in dealing with difficult behaviour. Parents also face difficulties in teaching them communication skills. basic life skills, protect them from danger, And prepare them for independence as adults.
Deches (2004) mentions that there are some factors that may increase the strength of the feeling of shock among families, which are:
lack of clarity in diagnosis, severity of autism spectrum disorder, Severe decline in intelligence, The extent to which society accepts the child, Different ways of expressing and communicating, The emergence of unwanted behaviors.
As for (Korkuts 2012), he shed light on society’s view of children diagnosed with autism spectrum disorder and society’s discrimination against children with autism spectrum disorder and parents as well. Parents may be viewed as part of the autism spectrum disorder or as the primary cause of it.
This social pressure causes parents to fear going to specialists and obtaining the appropriate diagnosis for their children. Refusal to obtain a diagnosis by parents may lead to confronting their child’s behavior, tantrums, and other inappropriate behaviors.
Parents may face negative reactions from society as a result of these behaviors that the parents were unable to deal with. Parents may continue to suffer with the changes that the child is going through, especially when he enters school. Mentionsed (Cortex 2012) indicates that families of children diagnosed with autism spectrum disorder need social support from neighbors, parents, and relatives on how to deal with social pressures.
Siblings of children diagnosed with autism spectrum disorder
Siblings of children diagnosed with autism spectrum disorder suffer from difficulties related to adaptation and poor relationships with their siblings with autism spectrum disorder.
A study also indicated that the anxiety and perceived stress of parents may be transmitted to children and negatively affect the health of family relationships. Research indicates that having a brother diagnosed with autism spectrum disorder may be reflected in the personalities of his siblings. As they are more likely to be diagnosed with mental disorders than others, This is due to the emotional burden resulting from growing up next to a child who has some behavioral difficulties and inappropriate behaviors.
In another study, it was mentioned that many siblings feel that their families view their needs as secondary needs. While more attention and time are given to their brother diagnosed with autism spectrum disorder. These siblings have a deep love for their sibling, but on the other hand, they express their resentment that he receives more attention.
Financial stress among parents of children diagnosed with autism spectrum disorder
The child may receive his diagnosis at an early age, Which requires early intervention to reduce the effects resulting from a diagnosis of autism spectrum disorder.
Early intervention strategies may be expensive, It requires long hours of work with a trainer or specialist. Parents spend huge amounts of money trying to obtain the appropriate intervention for their child with autism spectrum disorder.
Although public schools in major cities are obligated to provide appropriate education for children on the autism spectrum, However, the educational programs provided are often weak in their performance and results. This makes people look for other centers to receive the service and pay its costs from their own money.
Also, some cases require a specific diet that requires a lot of money to be saved. Also, some children may need medications that are not covered by health insurance. Sharpe and Baker 2007 say that health insurance may cover the cost of some medical tests used in the diagnostic process. The cost of prescribed medications, But it will not pay for treatments that target behaviors caused by autism spectrum disorder.
Stability of marital life among parents of children with autism spectrum disorder
An image comes to mind that the life of parents of children diagnosed with autism spectrum disorder is difficult and the possibility of divorce is high due to the tension and anxiety that creep into the life of the family when a child diagnosed with a developmental disorder is born.
Sobsey (2004) states that the challenges facing parents of children with developmental disorders have become more difficult than in past years. Marriage takes a long time to remain in good condition and maintain its balance. When there is a child with autism spectrum disorder, it may take a lot of time and one of the parents may be deprived of sleep as a result of the sleep disorders that their child may suffer from.
The emotional bond between parents may be weakened by the demands associated with having a child diagnosed with autism spectrum disorder, which may make one of them think about withdrawing and leaving the burden of responsibility on the other party.
On the other hand, parents may tend to isolate themselves from society due to the difficulty of taking their child with autism spectrum disorder to family visits, or they may feel uncomfortable inviting others to their home.
Conclusions
If timely intervention is not taken, parents of children diagnosed with autism spectrum disorder may face difficult challenges in dealing with behavioral problems associated with autism spectrum disorder.
From a psychological standpoint, Some parents of children diagnosed with autism spectrum disorder may experience periods of deep sadness, depression, self-blame, and guilt. Others may feel helpless, Feeling incompetent, angry, Shock and guilt. Therefore, parents of children diagnosed with autism spectrum disorder need to intervene and understand their child’s condition so that these feelings do not overwhelm them.
As for siblings, they may face problems related to adjustment and the difficulty of forming a good fraternal relationship with their brother diagnosed with autism spectrum disorder. Therefore, early intervention by the family is required to form good relationships and know the correct ways to deal with their brother.
From a financial standpoint, the diagnosis of a child with autism spectrum disorder places a heavy financial burden on the family, negatively affecting the family relationship between individuals if intervention is not done correctly and in a timely manner.
Ref
Challenges Faced by Families of Autistic Children-153.pdf (researchpublish.com)