Parenting an Autistic Child

Introduction

Research carried out in America has indicated that the number of children with autism has greatly increased with those receiving special education being over 140,000 in the last ten years (Gross, 2004). Autism is a disability that affects physical development as well as other skills necessary for growth of children such as social and communication skills. Psychological development and behavioral changes are some of the things affected by this unfortunate condition. The American Society of Autism identifies self-isolation, communication abnormalities, and obsessive as well as compulsive behaviors among children autism. Traditionally, this disability has always been attributed to parental negligence. In the recent, scientists have attributed autism to environmental as well as genetic factors (Volkmar & Weisner, 2004). Children experts advise parents to seek medical help immediately a child is diagnosed with the condition. There is no cure for the disease but professionals have advised for training and modifications in the behavior of children with the condition so that they can lead normal lives just like other children enjoy. Parents with children suffering from the condition admit that they face many challenges and stresses when handling their children. Both fathers and mothers sacrifice so that they can be good parents to their kids suffering from autism (Dunn et al., 2001). Divorces cases have been reported in parents having autistic children since families go through emotional problems and confusions (Jennings, 2005). In addition mothers suffer more and sacrifice more compared to fathers in parenting kids with autism (Bluth et al., 2015). Parents, who have autistic children need much support so that they can overcome challenges that come with parenting such kids and as well handle their kids with care, love and give them the necessary attention.

Autism is a mental disorder that occurs early in childhood during brain development (JH Miles, 2005).An autistic child is unable to use language to communicate and form relationships with the people effectively. This paper is very important since there has been a rapid increase in cases of children with autism with the United States recording 1in 90 births (Ganz 2007). These children have been neglected by parents, discriminated against and made to suffer due to the abnormalities they display hence fueling the need for support and assistance. Most parents are always filled with guilt and shame and due to ignorance as well as cultural beliefs on this condition treat these children differently from others. This paper will first examine the role of parents in bringing up children with autism, second, it will discuss the perceptions of parent-child interactive relationships with such children, challenges parents face while bringing up children with autism, Third, it will address the works of researchers on parenting children with autism, the methodology they used as well as critic the study and state the limitation of their study. Lastly, the paper will discuss the possible as well as recommendations that will help in curbing the menace.

It should be noted that children with autism present an extreme case when it comes to patterns of development. They hardly initiate behaviors that will engage others in social interactions with them. For instance, they always express a lack of interest in sharing things with others; they are always frowning and rarely express pleasure or draw attention hence making it hard for parents especially mothers of such children to smile in reply to the smile of their child as is always the case with normal children (Bluth et al., 2015). As a result, parents are forced to employ a mechanism of maintaining their child’s focus of attention. For example, they may use a physical control like holding the child on their lap while playing. There is always the feeling of depression and stress due to the failure of the child to connect with the mother since they are always so close with the child on a daily basis making her smile less. Parents always find such children to be difficult temperamentally, child moods; adaptability makes it hard for parents in their parental roles and often brings confusion in the family. These parents are often made to feel they are not competent to bring up the child and that they have less than they expected. There are issues with parental connections with the child as well as their social life because they feel the child needs control of their life and they cannot do something new concerning their lives since most times they are always feeling guilty and bad about the situation.

Research indicates that parents with children having other disabilities lead stress free lives compared to those whose children have autism since they face many challenges and stresses. Such parents need support from other parents so that they can overcome their stresses and shower their children with love and attention. Mothers feel frustrated handling autistic children since they cannot even socialize as other children do. They record feelings of alienation, cannot comfortably interact with other mothers and are segregated by other mothers who feel they are different from them. Besides, it has been hard on mothers to teach children things they are not familiar with. Hastings and Johnson (2001) indicate advanced stress in both parents of autism children who were school aged due to the impairments in communication, cognitive abilities as well as poor social relations between child and parent in research conducted on 30 mothers and 11 fathers.

According to Larson (2010) mothers whose children are autistic feel burdened and fatigued when handling their kids especially when they have to control their children when undertaking social activities. Mothers have to manage behaviors of their children which become tiresome and stressful. In addition (Davis & Charter, 2008) report that fathers whose parents are autistic found it difficult and tiresome to interact with them and rather leave them under the care of the mothers. Behaviors of the children in public places such as tantrums and odd vocalizations made fathers feel uncomfortable handling their children (Dominick et al. 2007). The child’s inability to eat or even self-regulate emotions, as well as resistance to touch or being held, presents stressful circumstances in parenting (Degangi et al. 2000)

Behaviors demonstrated by autism children, for instance, regulatory problems like eating, being emotional unstable as well as sleeping irregularities puts parenting in very stressful positions as well as an increase in psychological stress (Abbeduto et al., 2004).Also, parental mental health has adversely been affected due to the depression they go through in bringing up children with autism (Maxted et al. 2005). Parents who are poor tend to feel stressed since they have to provide more for their children in such conditions. Costs associated with this kind of disability including health care, education, rehabilitation, payment of caregivers as well as transportation is approximated as $90 billion yearly ( ASA, 2008). A study by Wiggs and Stores (2001) has identified parents with autistic children undergoing treatment for sleep problems.

Research Analysis

       There are various researchers who have analyzed parenting children with autism which this study will mainly analyze. (Davis & Carter, 2008) conducted a thorough research on what parents with autistic children go through and challenges they face when dealing with their children. Children selected for this study were those that both parents participated in the interviews and questionnaires. The two came up with 20 questionnaires that were filled by both parents of the children with autism. Fathers only answered the questionnaires while mothers were required to answer the questionnaires and participate in the interviews as well. The second selection of children involved one child per family whereby each parent gave their own observations regarding their children independently.   The limitation of this study was that it gave more attention to mothers than fathers of the child since it is only mothers that were interviewed and not fathers as well. Also, the research only concentrated on married couples and left out single parents or those that had divorced. Besides, parents who had autism were not sampled and included in the research. The research was very limited and was not wide enough since it only concentrated on a small clinical group. On the other hand, it is evident that the work of most researchers on parenting autistic children is centered on mothers and leaving out or rather providing too little on parenting by fathers of such children (Estes et al., 2009).

Theoretical justification

This paper will discuss the refrigerator mother theory which will enable people understand the condition of autism. According to Synapse, (n.d) the refrigerator theory was established in 40s where it was used to guide mothers of autistic children. Most of the people were not aware of the condition and often criticized mothers whose children suffered from autism. The society thought the condition was abnormal and often accused mothers because of this unusual condition. They thought the abnormal behavior was as a result of the standoffishness of the mothers which was not the case. Many mothers were blamed thus feeling remorseful and even doubted themselves feeling like they could be the reason for their children’s condition. The societal view on autism continued until the 70s. Bruno Bettelheim was one of the professors in Chicago University who believed that autism came as a result of mothers failing to bond properly with their kids. He associated the disorder with mothers who were cold to their kids therefore creating a barrier between them and the kids who ended up developing this unusual condition. In addition Leo Kanner, a psychiatrist in 1943, suggested that autism developed due to lack of necessary maternal care and warmth which should be given by the mother to the child (Synapse, n.d).

The refrigerator mother theory was passed on from the 40s, 70s till the 90s where another research Alice Miller came up with different reasons why the condition of autism affected children. She argued out that autism was actually psychogenic and unlike her forerunners she conducted a research before coming up with conclusions on this unusual condition (Synapse, n.d). Miller visited many therapy centers for people with autism thereby listening to the views and stories told by children who had the condition. She believed that parents had something to do with the mental wellness of their kids depending on the upbringing of the kids and the environment they are exposed to when they are small. Miller did a good job in carrying out this research since other people jumped into conclusions even without carrying out formal research. However, she only concentrated on visiting the therapy centers for people living with autism rather than visiting parents of the affected children. She did not carry out her research in various homes where parents and their autistic children lived. If she had carried out her research in the therapy centers and homes, the research would have been valid since it would not remain biased. Children who were found in the therapy centers could have given irrelevant stories since they are mentally challenged. A balanced research would involve interviewing kids and their parents as well as close relatives and friends so as to avoid bias.

Jay Joseph also released a book in 2006 that challenges the existing genetic theory on autism. According to Joseph, it is clear that the current theory is weak as it does not offer any substantial explanation, though many almost accepted it. Joseph argues that the theory mainly focuses on family studies and is not able to straighten out the political manipulations of genes and environment. Additionally, the four small twin studies conducted for this are methodically flawed which renders them incapable of explaining this theory. In the years that have followed, researchers that have been done have proved futile.

Community interventions

Community support has been useful to parents having autistic kids whereby both parents and kids are supported. Research indicates that support is equally available for kids with other types of disabilities. . There are established programs for parents with such children whereby they are trained on employing specific behavioral management skills, communication skills as well as interactive skills. The community programs however are not as effective as they are supposed to be since most of the parents with autistic children are poor therefore cannot afford services such as therapy to their kids. They lack the necessary knowledge on how to train and take care of their kids since they are financially disadvantaged. Parents face many challenges, stress and depression when handling their kids thus they do not collaborate in the community intervention programs. However, community interventions that have been able to offer specific programs purposely designed for autism, included problem solving sessions, communication skills, and self-control among others that will help these parents execute programs that will benefit their children when these social barriers are done away with (Webster-Stratton and Reid, 2003).parents are taught and trained on how to handle their kids and given time when they need to take their kids for therapy. They are taught on reasons they should appreciate their kids thus shower them with love.

Recommendations

• Establishment of family based centers in every community where parents can be trained on strategies to develop in interacting with their children while focusing on best homemade programs
• Participation of parents as well as caregivers in the entire process of formulation and running of such community organizations to reflect their needs and interests as well as cooperation
• Establishment of home program intervention that will ensure both parents and their autistic kids live comfortably and normally.
• Coming up with awareness programs where the public is taught on the autism disorder and ways of handling such kids and necessary support parents with these kids need from the society.

Conclusion

It is evident that autism is a disorder that causes much stress and challenges to parents. It is the joy of all parents to have kids but parents with autistic kids pass through stress as they raise their kids since they have unusual behavior patterns unlike other children. However, mothers are the most affected compared to fathers. The community needs to understand the autism condition and help parents having autistic kids since they pass through many challenges thus they need moral, emotional and financial support. Autism being a social problem, need to be well handled whereby people should not discriminate kids with autism and instead they should come up with training centers for the kids so that they can be taught on various social patterns such as communication. Parents with autistic kids need to appreciate themselves and their kids for them to raise their kids with love, care and attention. As parents learn how to accept their kids, the society will accept them too and ensure they learn the normal behavioral patterns.

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