Impact of Autism Spectrum Disorder on Parents

For this summative piece, I have decided to look at 'What is the impact on parents when having a child on the autism spectrum disorder.' I believe this to be an important topic worth discussing due to the focus usually being on the child rather than their parents. This leaves the parents feeling neglected that they do not have the support. I think if they had support, they would not feel neglected therefore the feelings that come with feeling neglected may minimise.

For doing my research my strategy was to go onto the Library website. When doing this I typed in 'parental well being' Autism - this came up with 32 results, I then tweaked it, so it was peer-reviewed and got 28. I then made sure it was in the English language and that the subject was autism as I was just getting results for 'intellectual disability' and not 'autism' from this I was able to get it down to 16. This for me was a reasonable amount of research to look though and seemed manageable for this piece of work. From those 16 articles I was able to pick 9 that I believe to be good for this summative piece. Since 9 is too little for this piece of work I looked at references from the articles I had and found and read others that I believed to be relevant to my question.

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With all these articles I am going to read through them all and investigate their key findings, limitations, strengths and weaknesses and what implications it may have for social work.

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). These symptoms can hurt the child's ability to function properly in school, work, and other areas of life. Depending on the severity of Autism the child has it can affect parents in different ways. The severity of autism and behavioural problems in children are strong predictors of stress and emotional distress in mothers of children with ASD. Moreover, although the severity of autism symptoms and behaviour problems tends to decrease with age, these characteristics continue to present limitations in the lives of individuals with ASD and to affect the well-being of their parents (Blacher and McIntyre, 2006; Lounds et al., 2007).

When conducting this 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 emphasises quantification and measurement using statistical tests. Quantitative data is usually collected for statistical analysis using surveys, polls or questionnaires sent across to a specific section of a population.

From the research there has been a clear indication that how it could affect the parents are though; depression, anxiety, parental stress and guilt as these were reoccurring themes, I was getting throughout all the literature. Only one article I had read stated the positive gains the parents can have when rising a child with autism or another disability, these included personal growth, improved relationships with others, and increased patience and empathy (Hastings and Taunt, 2002, Pakenham et al., 2005, Scorgie and Sobsey, 2000).

I 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, S., Mcconkey, R., & Kelly, G. 2013). This could be an implication for social work because it means there is not enough awareness/information being given to the parents of children with ASD.

(Ibid) states that most programmes focus mainly on child outcomes rather than parental needs and the content of training delivered are based on what professionals believe parents need to know rather than their wishes, this backs up my belief that the focus is usually on the child rather than their parents - This could be an implication for social work practice because the role of a social worker is to improve the lives of the people they support, as well as their families (BASW, 2019). This could be an implication to social work because although the social worker is there to support the child, they also need to help support the parents and from research, this does not always seem to be the case, this may be due to lack of funding in social work, or lack of time due to their caseloads. In my opinion, the parents need as much support they can to help benefit both themselves and the child.

This article focuses on group-based training, initially, when reading this, I did not think the results would show improvement because they were not getting that one-on-one interaction however I was wrong. The parents within this study stated that informal supports from friends and peers can help reduce parental stress and improve their general wellbeing and said it was more helpful than formal support, this could be an implication to social work because the parents find it more comfortable in an informal environment instead of a formal one. They feel comfortable talking to other parents who are experiencing the same things/emotions and maybe reluctant in speaking to a social worker about how they feel in case they come across as incompetent or being in an unsuitable environment, from this it is clear that social workers need to take a different approach.

Within Lai, W.W., Goh, T.J., Oei, T.P.S. et al (2015) study it examined psychological well-being and coping in parents of children with ASD and parents of typically developing children. 73 parents of children with ASD and 63 parents of typically developing children completed a survey. The parents of children with ASD reported significantly more parenting stress symptoms (i.e., negative parental self-views, lower 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 typically developing children.

Although I found this study useful, they had more parents of children with ASD (73) than they had parents of typically developing children (63). Although I believe with having a child with ASD can cause many negative feelings, for example, the ones mentioned previously, 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 typically developing children to get more accurate results.

Pilar Pozo, Encarnación Sarriá (2015) article compares the well-being of parents of primary-school-age children, adolescents and adults with ASD. In addition, they examined the extent to which parental well-being was predicted by the characteristics of their children, social support, parental age and their perception of the situation. Child characteristics of ASD children are not the only variables that influence the well-being of parents; social support and psychological factors – such as coping strategies and the perception of the situation – also affect parental adaptation. In relation to social support, a larger social network is associated with improved maternal well-being from childhood to adulthood, which was also stated in Samadi, S., Mcconkey, R., & Kelly, G. (2013) study. Nevertheless, in the transition from junior to high school, there is a significant reduction in the formal support available for families, informal support, too, declines over time. I believe this to be in implication to social work because once the child goes into high school the autism symptoms and behaviour problems tend to decrease with age however that has not been the case from my own experience from having a brother with ASD the social work visits become rare and brief and only ever when something bad happens. This could be because they have more severe cases however if this is the case then social workers should have all the relevant information to assist families about support groups if they aren’t going to be round as often as they once were. If they provided all of this information may be then the families would not feel so out of their depth and stuck in negative emotions e.g. depression.

To conduct this research, they contacted psychologists at educational centres linked to the Professional Association of Autism in Spain, informing them of the study. Parents then received a letter inviting them to participate, noting that participation would be voluntary and confidential. We relied on convenience sampling based on schools' and parents' availability. Participants completed a set of questionnaires distributed either through the school/day centre or by email, depending on their preference.

The results revealed differences in parental well-being depending on the life stage of their children. Although stress and psychological well-being levels were similar across age groups, this study found some differences in other outcome variables. Specifically, anxiety levels were lowest among parents of adults, and depression scores were lower in parents of adolescents compared with parents of primary-school-age children. These results are consistent with previous research showing sustained levels of stress in parents of children with ASD but decreased maternal anxiety over time. Though looking through the results of this study it should be interpreted with caution, as the cross-sectional nature of the design prevents them from determining the direction of the relationships between variables.

There are also other limitations: all measures, except the CARS, were self-report questionnaires; selection of participants was based on convenience sampling; participants were exclusively from Spanish families. There is wide cultural variation in the dynamics of families and the availability of social supports for people with autism; therefore there is a need to be cautious in generalising these results to other cultures.

Despite the limitations mentioned, the current study presents a comprehensive assessment of the well-being of a large sample of parents of children with ASD across a wide age range. Included were also 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 groups of parents were identical in gender (50% fathers, 50% mothers) and were similar in education level and family income. However, significant differences were found in parental age, marital status and employment status. A further strength was the inclusion of fathers, while most other studies in this area are based on only the responses of mothers, therefore I believe further research into fathers needs to be done in the future.

Manuel Fernańdez-Alcántara, et al. (2016) study is about analysing in-depth the feelings of loss in parents of children diagnosed with an autism spectrum disorder. When they talk about loss, they mean the loss of raising a typically developing child. The parents then have feelings of disbelief, distress, anxiety, or sadness which are frequent during the diagnosis and the following months (Ludlow et al., 2012).

They speak about needing intervention to support these parents to require knowledge of their emotional state in order to plan and implement programs adapted to their real needs however only mention it and not go into detail. I believe this could be an implication to social work as social workers are there to help raise awareness, and some parents may not be sure where to get this information, therefore making them worry more about their child’s diagnoses. I believe social workers need to raise more awareness. Also, in relation to healthcare professionals, they need to understand and take account of these feelings the parents have as the parents may require specific emotional interventions which could come from social work (collaborative practice).

Looking at the study sample it consisted of 5 fathers and 15 mothers which I believe is a limitation as it would be better if it was 50/50. 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. However, it did state that the fathers so feel stressed about the situation but not as much as mothers.

As mentioned previously at the start of this review, there has been a clear indication that how it could affect the parents are though; depression, anxiety, parental stress and guilt as these were reoccurring themes, I was getting throughout all the literature. 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, W. & Lloyd, 2008). Samadi, S., Mcconkey, R., & Kelly, G. (2013) states that the parents that were on this short course mostly relied on emotionally focussed coping which they stated was not the best, they rather them relay on problem focussed and this group helped them to do so. Paul R. Benson also states that its either problem or emotional focussed coping. However, Lai, W.W., Goh, T.J., Oei, T.P.S. et al. (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. I understand that this is how some people cope with stress, however, I do not agree with this, they should try and turn to problem focussed coping because avoiding thinking about it, is not doing anything to help rectify the situation. When doing some further reading I found that problem-focused coping methods (e.g., planning, taking action to address the problem) have often, but not always, been associated with improved mental health outcomes (Abbeduto et al., 2004, Aldwin and Revenson, 1987, Seltzer et al., 1995)

Although I found these articles useful and knowledgeable when it comes to my question, they do have some limitations. They have small focus groups therefore only getting a small portion of results. They do not have equal gender numbers; it was mostly mothers just mentioned within the research. The graphs shown were difficult to read and understand and the terminology used was difficult to comprehend.

When it comes to reflecting on the research I have read, I thought why not talk 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 but are not limited to: 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. Therefore, 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 considering it 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 parents life directly/indirectly impact the child's life (benefits both parents and child). There is a policy in place for children which is GIRFEC, maybe getting a policy like this in place for the parents may be beneficial for them, it ensures that they are safe for example, domestic abuse, healthy - wellbeing, mental health, active - gym, social outings, respected - their voice is heard throughout the child's plan, responsible - under the children Scotland act 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 and Included - feeling a sense of belonging and inclusion within their community, when thinking of this I think of Maslow's hierarchy of needs……. EXPAND?

In conclusion, 'What is the impact on parents when having a child on the autism spectrum disorder' is the question I asked, I read 9 articles and the research I found and read answered this question and has been consistent throughout all the literature, for example, depression, anxiety, parental stress and guilt were the themes that kept appearing, the one thing that did change throughout was the way the parents would cope with the themes mentioned previously.

From all the research conducted I do believe that there should be more research done concerning the impact on fathers, even though the question I asked specially stated parents (mothers/fathers) fathers were only ever mentioned briefly, this could be because fathers may be more reluctant to participate however they should make the research 50/50. I also think more research should be done on females with ASD as throughout all the literature, most children were male, though this could be because boys are four times more likely to be diagnosed with autism than girls (Autism Speaks, 2018).