“Autism spectrum disorder (ASD) is a neurodevelopmental disorder defined by deficits in communication and social interaction, and the engagement in restricted and repetitive patterns of behaviours” (American Psychiatric Association, 2013). Due to this, the child will have trouble functioning in work, school, and other areas of life. For example, if routines change this is something a child with ASD will struggle to cope with. As autism affects the child in different ways, this in turn can have an adverse effect on the child’s parents.
Through my research, I looked at both qualitative and quantitative methods. Qualitative research explores 'the meaning of what is happening' (Whittaker, 2012: 6). Qualitative research seeks to explain the meaning of social phenomena through exploring how individuals understand or make sense of their social worlds and some examples of this could be semi-structured interviews and/or focus groups. Quantitative research uses statistical tests. Quantitative data can be presented in charts and graphs and is usually gathered with the use of closed-questions in a poll questionnaire or survey (Babbie, Earl, 2010).
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From my research there has been a clear indication that autism can affect the parents through; depression, anxiety, parental stress, and guilt. These were reoccurring themes I saw throughout my research. These themes are not the only things being considered; however they came up in every article I had read. Only one article stated the positive gains the parents can have when raising a child with autism, these included improved relationships with others, personal growth, and increased empathy and patience. (Hastings and Taunt, 2002, Pakenham et al., 2005, Scorgie and Sobsey, 2000).
The Samadi, Mcconkey, & Kelly (2013) study focuses on group-based training, it is about providing information about ASD and giving families the opportunity to share their experiences and learn from each other. In this study 43 parents were interviewed with two aims. Firstly, to see how good their knowledge of ASD was, their experiences of having a child with ASD and the impact it had on their well-being and coping strategies. The second aim was to provide them with more information regarding the training course. Out of the 43 parents interviewed, 37 agreed to participate.
The parents within this study stated: “informal supports from friends and peers can help reduce parental stress and improve their wellbeing” and said it was more helpful than formal support. This study found that it “is a clear need for parents of children with ASD to be better informed about this condition and to be supported to cope with the stresses and strains of bringing up a child with ASD” (Samadi, Mcconkey, & Kelly, 2013).
Samadi, Mcconkey, & Kelly (2013) also states that most programmes are centred around the child rather than the parents, their needs, and wishes. The training delivered is usually based on what professionals believe parents need to know, this form of training is not necessarily tailored to an individual child.
Within Lai, Goh, Oei, (2015)’s study they, looked at the psychological well-being and coping of parents with children both neurotypical and autistic. A questionnaire was sent out and completed by 73 parents of children with ASD and 63 parents of neurotypical children. Parents of children with ASD reported more parenting stress symptoms, for example, “negative parental self-views, low satisfaction with parent-child bond, and experiences of difficult child behaviours, more depression symptoms, and more frequent use of Active Avoidance coping, than parents of neurotypical children” (Lai, Goh, Oei, 2015).
Although I found this study useful, they had more parents of children with ASD than they had parents of neurotypical children. As there were 10 less parents of neurotypical children this gave the study a skewed sample. Therefore, I do not believe this study to be fair as they should have the same number of parents with children with ASD and parents with neurotypical children to get more accurate results. This is important because the total or neurotypical children’s parents is only 86% of the sample of autistic children parents. If both samples were of an equal size the missing 14% of neurotypical children’s parents could have shown the same negative parent self-views as the parents of autistic children showing a more similar experience of parenting between the two groups.
Pozo, Sarriá (2015)’s article compares the well-being of parents of primary-school-age children, adolescents, and adults with ASD. They also examined parental well-being as predicted by the characteristics of their children, parental age, social support, and psychological factors. They contacted psychologists at educational centres which were linked to the professional Association of Autism in Spain. This study used a set of 7 questionnaires were sent out.
The results within Pozo, Sarriá (2015)’s study shows variations in parental well-being depending on the life stage of their children. Stress and psychological well-being levels showed little difference across age groups. Higher levels of anxiety where found in the parents of primary school children compared to adultescents, and parents of adultescents had higher levels of anxiety than parents of adults. This shows a reduction in anxiety levels with the growing age of the children. These results are consistent with previous research that showed sustained levels of stress in parents of children with ASD but decreased maternal anxiety over time.
There are limitations within this study, for example, questionnaires were self-reported, participants were selected based on convenience sampling and therefore participants were mainly Spanish families. Family dynamics vary between culture and the availability of social support for people with autism varies from country to country; therefore, caution is needed in generalising these results to all cultures as they might not transfer to a family set up in the UK.
Despite the limitations, it is still a detailed study regarding the well-being of a large sample of parents of children with ASD across a wide age range. This study shows both negative and positive aspects of parental well-being which is nice to see considering most of the research only focuses on the negative. The study’s sample of parents was equally divided in gender. The sample also showed a similar education and family income. Another strength of this study was their inclusion of both parents as most studies around this area are based only on the mother. Further research into fathers needs to be done in the future to get an even outlook on the impact on parents and not just mothers.
In line with this study, there is less formal support available for families in the transition period from primary to secondary school. Informal support also sees a decline over time. This could be because according to Esbensen et al. (2009) the severity of autism symptoms and behaviours tend to decrease with age.
Manuel Fernańdez-Alcántara, et al. (2016)’s study is a qualitative study and is about analysing in-depth feelings of loss in parents of children diagnosed with ASD. To get their information semi-structured interviews were conducted. Within the interview they asked about different emotional aspects when bringing up a child with ASD. Major factors found within this study were; strong feelings of grief, the reaction they had when finding out the diagnosis as they felt the loss of a neurotypical child. They found that parents needed to make major effort to come to terms with their own feelings of loss and that emotional work was necessary to deal with all these emotions.
The study also cites Ludlow, et al. (2012) who stated that “the parents then have feelings of disbelief, distress, anxiety, or sadness which are frequent during the diagnosis and the following months”. Manuel Fernańdez-Alcántara, et al. (2016)’s study says we need intervention to help parents acquire knowledge of their emotional well-being. Using this to plan and implement programs adapted to their needs. This study only mentions this and does not go into detail.
The study consisted of 5 fathers and 15 mothers which I believe is a limitation as it would be better if it were equally divided which means getting an even outlook on the results. Whereas looking at it in its current state, you are not getting a fair outlook, due to it heavily being weighted on the mother's views. The more data you get, the better the study as it means you will be able to identify anomalies more easily. I do believe for this study they may have chosen more mothers than fathers because they stated that the mothers felt more loss and negative emotions than the fathers. It did state that the fathers do feel stressed about the situation but not to the extent mothers do.
The Baker-Ericzén, et.al (2005) study examines parental stress before and after participation in their inclusion toddler programme. They got their information through 3 different types of questionnaires. This study has parents of both children who are neurotypical (23) and with ASD (37).
Research on young children with developmental delays indicates that behaviour problems and severity of impairment are important when it comes to predicting parental stress. There are reports of elevated stress in parents of children with autism regarding to their ability to relate to their children, this also leads to them stressing about the number of care-taking responsibilities, now and later in life. This is shown particularly in mothers who are most often the primary caregiver.
As mentioned previously, there has been a clear indication that having a child with autism could affect the parents through; depression, anxiety, parental stress and guilt as these were reoccurring themes, I was getting throughout my research. However, not all the articles I read agreed on how the parents cope. “Coping means to invest one's conscious effort, to solve personal and interpersonal problems, to try to master, minimize or tolerate stress and conflict.” (Weiten & Lloyd, 2008).
Samadi, Mcconkey, & Kelly, (2013) state that the parents that were on the Enhancing Parental Well-Being and Coping Family-Centred short course mostly relied on emotionally focussed coping which they stated was not the best, they preferred them to rely on problem focussed coping and this group helped them to do so. However, Lai, Goh, Oei (2015) mentions that the parents within their study often used avoidance focussed coping which involves changing their behaviour to try to avoid thinking or feeling uncomfortable things however avoiding thinking about it is not doing anything to help rectify the situation. According to studies carried out by Abbeduto (et al. 2004), Aldwin and Revenson (1987) and Seltzer (et al. 1995), problem-focused coping methods such as planning or taking action to address and resolve the problem, have often been associated with the improvement of one's mental health.
These articles were useful and knowledgeable when it comes to my question, but they do have some limitations. They have small sample groups therefore only getting a small portion of results. They do not have equal gender numbers. Most of these studies used questionnaires and tick boxes which does not get much open-ended information from the family, which in turn limits the amount of qualitative data. For the researchers, it was a quick way to collect information from a large number of people in a short period of time and is cost-effective, which is good for big studies like all the ones I have mentioned as they have a big number of recipients participating. Tick boxes also have some advantages such as direct questions with direct answers which are likely to be more accurate when analysing than open-ended answers.
When reflecting on the research I have read, I thought about what social researchers mean when they talk about 'reflexivity'? Bryman (2016) defines it in this way: 'A term used in research methodology to refer to a reflectiveness among social researchers about the implications, for the knowledge that they generate about the social world, of their methods, values, biases, decisions, and mere presence in the very situations they investigate.' These things include the cultural background of the researcher, participants and users of research findings, their socio-economic positions, gender, age, the presence and absence of disability, values, geography, personal experiences or underlying assumptions.
For future policies, I think the government should mention how parents should be supported by professionals. They should make polices more inclusive to parents with a child with ASD. This is considering ASD is so common, in 2018 it was determined that approximately 1 in 59 children is diagnosed with an ASD (Autism Speaks, 2018). Policies regarding parents with a child with ASD should take a holistic & ecological approach understanding how the different systems in a parent’s life, directly and indirectly, impact the child's life (benefitting both parents and child). There is a policy in place for children which is GIRFEC, getting a policy like this in place for the parents may be beneficial for them, it ensures that they are safe for example against domestic abuse and severe illness. It would also make sure they are respected, that their voice is heard throughout the child's plan. Under the Children Scotland Act (1995) the parent is taking most of the responsibility for the care of their child but is also managing adult responsibilities, for example, avoiding debt, paying bills etc.
While all adults have these responsibilities those with autistic children have the added responsibility of caring for a child with a diagnosis that is not really understood, whose actions may put themselves in danger as well as others around them and may not be able to work due to having to stay at home.
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