In Bradshaw (1988), shame is regarded as an emotion that makes people human. By exhibiting this emotion, people can have limitations for their actions and therefore bringing order and sanity in the community. However, shame is regarded as toxic when it tends to make a person more human or less human. People suffering from this kind of shame refuse to accept who they are and have a tendency of inflating their ego. On the other hand, individuals who think less of themselves tend to undermine their abilities and thus end up being less productive. Such people suffer from low self-esteem and greatly rely on others to have things done since they do not believe in themselves. People who identify themselves with toxic shame end up dehumanizing themselves since they believe that they are flawed (Bradshaw, 1988). As described by Bradshaw (1988), humans usually develop shame as they grow up. This emotion typically depends on the surroundings that a person is spends their formative years. Due to the conforming nature of human beings, people expect everything to happen and occur in a particular manner, and any form of abnormal behavior is subject to stigmatization that eventually leads to the development of toxic shame on the affected party. In the society, there are many disorders and especially mental disorders that make people and their families be subjected to shame. One such disorder that people get ashamed of when one of their family members suffers from is autism. Poor public knowledge and understanding of this mental condition are the major causes of stigmatization towards the victims and shame towards those associated with the autistic patients. Different parts of the world have different perceptions and understanding to autism.
In the developed world, communities are well aware and more informed about this condition as compared to developing world where people have very eccentric explanations concerning this medical condition. Bilgin and Kucuk (2010) explain that the negative approach towards people with conditions such as autism in developed countries is contributed by the fact that the community blames the family for such abnormalities. People from the developed world believe that conditions like autism in a family are caused by immoral deeds or sins that are done by the parents or even ancestors of the afflicted person. This line of belief then leads to rejection, shame, and blame thrown to the family members of the disabled person which in turn threatens the cohesiveness of the family.
Wilson is a nine-year-old child from the Republic of Uganda. The child was diagnosed with autism at the age of four. Suffering from this condition has put his family to shame as the local community perceives that the child got this illness from the immoral and sinful ways of his parents. Teachers in schools have already developed a negative attitude towards Wilson and his family. Other parents in his village also do not encourage their children to play with him.
Despite being autistic, Wilson has exhibited average performance in class which has astounded many. However, his angry outbursts and clumsiness make him unfit to attend school with his other peers. Therefore, Wilson’s parents have been forced to move him to a special school that deals with autistic children. This special school is very expensive, and the parents are finding it hard to maintain their child there. The positive side of Wilson is that he is very much willing to get well and he is responding well to his treatment.
Effects of Shame
As addressed earlier, toxic shame affects people in two ways; one of the ways is making a person over confident, and the other is making a person suffer from low self-esteem. Wilson’s parents are also subject to such emotions because of their child’s conditions. The parents can experience a range of feelings that come to surface from time to time and end up affecting their actions. Experts argue that there is no wrong or right feelings towards this situation since different people respond to different demands in their caring way. Shame is a personal feeling, and each person is expected to react differently when he or she encounters it. Some of the feelings that Wilson and his parents experience as a result of shame include depression, anger, confusion, guilt, stress, anxiety, frustration, and sadness.
Frustration in his parents comes from the lack of understanding from the community. In developing countries, the majority of the population does not comprehend what autistic patients go through and what leads to the condition. This lack of comprehension leads to the afflicted families like that of Wilson being distanced by their relatives and friends. In his community, Wilson is even assumed to be willfully disobedient or stubborn. Frustration in the parents also arises when Wilson has angry outbursts, lack of emotional response, shows challenging behaviors or exhibit clumsiness.
Wilson’s parents also suffer from anxiety. Anxiety, in this case, is brought about when they start to worry about his future. His parents have developed fear since they wonder the level of independence, development, or happiness their child will have when he becomes an adult. Fear also arises when the parents think what will happen to Wilson in case they pass away or can no longer cope with the condition.
Stress that comes from dealing with Wilson may make his parents develop guilt. Guilt in the parent is usually as a result of thinking that they are the ones responsible for the disorder in their child. The guilt may make his parents present themselves to the point of not wanting to have any more children in the future. Other negative emotions and reactions that come from guilt include loss of temper by the parent and the parent being embarrassed by Wilson’s actions. Anger also manifests itself in this process since Wilson’s parents are sometimes overwhelmed by the lack of communication, angry outbursts, challenging behaviors and other signs exhibited by their child because of his condition. They also become angry since they no longer have support from their friends or relatives.
How to Help Autistic Children and their Families
There are some remedies that Wilson’s parents may opt for to assist their children who suffer from Autism Spectrum Disorder thrive in the society. However, it is also advisable for them to look for the needed support since attending to an autistic child is not easy. Being emotional strong is a mandatory character for a parent attending to an autistic child. Apart from being emotionally strong, Wilson’s parents are encouraged to learn more about the mental condition of their son. Having this knowledge enables them to become better equipped and more informed, and thus it helps them in making informed decisions that affect Wilson. It is also prudent for Wilson’s family to educate themselves on the different treatment options, participate in the treatment decisions, and ask questions concerning the condition and treatment methods.
While familiarizing themselves with the treatment options, the parents should also be experts on their children. Bilgin and Kucuk(2010) advocate that the parents should figure out what triggers Wilson’s disruptive or challenging behaviors and what invokes a positive response. What Wilson finds frightening, stressful, enjoyable, uncomfortable, and enjoyable are other factors that the caregivers should be noted. If the parents understand what affects the child, he will be in a better condition of troubleshooting the problems and modifying or preventing situations that may bring about difficulties. Rather than focusing on the autistic condition that distinguishes Wilson from his or her peers, his parents should practice acceptance. By practicing acceptance, parents can enjoy Wilson’s small successes which will also make him feel accepted in the society. The feeling of acceptance and unconditional love will help Wilson more than any other solution to this condition. Although dealing with autism can be challenging, the parents are advised not to give up on their child.
Connecting to Wilson be quite challenging but you do not need to talk or touch him to communicate. One can communicate to him using body language, different tones of voice and by the way you touch or look at them. Wilson’s parents should note their child is constantly communicating even if he does not speak. While assisting Wilson to adapt to their surroundings, his parents are encouraged to be aware and observant so as to learn and pick up nonverbal cues that their child uses to communicate. This can be learned by paying attention to his facial expressions, the sounds he uses and the gestures he makes when he is hungry, tired, or in need of assistance. It is important to note that Wilson is still a child and he needs a parent more than he needs therapy. Therefore, Wilson’s parents are supposed to schedule playtime when their child is awake and most active. These playtime schedules should be made of fun activities that make Wilson laugh and smile. Wilson bound to enjoy these activities especially if they are not educational or therapeutic. Play is a significant part of learning for a child whether autistic or not and should, therefore, be used in assisting them despite their mental, physical, or emotional state.
Barriers to Treating Autism
Treating of autism especially in the developing countries is faced with a lot of challenges. The stigma associated with this mental condition is the main hindrance that faces an autistic child from these areas. Most of the people believe that Wilson is either under witchcraft spells or his parent’s immoral ways have led to the condition. Having this mentality prevents Wilson from receiving the needed medical attention. Apart from the superstitions associated with this condition, developing countries like Uganda have not invested much in the research on autism. Compared to other diseases such as cancer, HIV, and diabetes, this condition is receiving very minimal attention. The minimal attention given to this condition has made autism not to be covered by most of the insurance companies. Lack of insurance cover makes the management and healing of this mental condition a tough process.
Poor research in this condition has also resulted in the release of less effective drugs. The supplements and medicines used in curing or managing this condition have proved to be ineffective. Pharmaceutical companies have also neglected autism patients like Wilson since they no longer invest the required time and money in their research and development when it comes to Autism Spectrum Disorder. Codependence is another factor that has adverse effects on the treatment of autistic children. Codependency is known for its disempowering of the affected person and leads to fear of self-expression, loss of self-esteem, guilt, and fear. Wilson may develop a feeling of helplessness since he or she feels trapped in the role of the helpless patient.
Healing and Recovery Process
For many years, autism has been regarded as a life-long condition. However, recent evidence is suggesting that a significant number of children suffering from this condition can recover. Despite the evident recoveries from affected children, professionals still argue it takes more than just the treatment methods for the people living with autism to recover fully. The characteristics of Wilson play a very significant role in the recovery process. Characteristics such as high IQ levels, motor and verbal imitations, motor development, and the development of receptive language ability mostly determine the recovery process. Early diagnosis and initiation of treatment also assisted Wilson in his road to recovery. Both the inherent characteristics of Wilson and treatment methods being used are likely to explain the recovery process.
Autism and Attachment
Savarese, (2007) states that there is no relationship between autism and the inability to develop an attachment. The argument that autism is also caused by the relationship between the children and their parents is outdated and has been refuted by the majority of medical professionals. However, most Wilson shows evidence of attachment to his mothers and other caregivers. He also directs more physical contact and social behaviors to them as compared to strangers. Children who exhibit an increase in attachment behaviors with regards to reunion and separation demonstrate more advanced play skills as compared to Wilson who shows no changes to attachment behaviors. The main explanation behind this is that autistic children need more advanced levels of symbolic ability so as to develop attachments to others as compared to normal children.
Stigmatization and discrimination of autistic children like Wilson are very common in developing countries because of their lack of understanding of the causes of this condition and how to manage it. In these countries, parents of autistic children undergo a lot of stress and shame because of the nature of their children. The abnormal behaviors and reactions as a result of autism make these children less desired in the society and are hence considered as a nuisance to society. Dealing with shame as a result of a child’s mental status can be very frustrating to the parents especially if they do not understand the cause and how to manage it. However, there are several remedies that one opts to follow. Some of these remedies include scheduling playing time for your child and coming up with a nonverbal mode of communication.
Autism negatively impacts a person’s language, social interaction abilities, and communication. According to National Institutes of Health (2009), autistic people and their families feel excluded from their social circles and are more vulnerable to social stigma. Research has shown that negotiating and living with stigma is a prevalent theme in families experiencing or having abnormal children. The majority of parents and especially mothers experience stigma both enacted and felt on an ongoing basis. In most of the social settings, people may have harsh judgments towards an autistic child’s unusual behaviors. They attribute these behaviors to bad parenting which eventually results to shame to such families which ultimately restricts the social life of their families. Parents to autistic children claim that they feel their children are stigmatized and rejected socially which eventually leads to isolation among the affected parents (Woodgate et al., 2008).