First port of call: facing the parents of autism spectrum disorder

Abstract

Background: Autism spectrum disorder (ASD) is a debilitating condition for the child as well as the parents and family. Research in ASD is on the increase with many studies coming out of developed countries. To add to the knowledge base in ASD from a South African perspective, the experiences and coping strategies of parents of children with ASD were explored.

Methods: A qualitative phenomenological research design was adopted. The sample consisted of 11 parents of children with ASD. The data was collected using semi-structured interviews. Interviews were audiotaped and transcribed verbatim using pseudonyms for participants’ names. Thematic analysis was used to analyse the data into themes.

Findings: There were a number of themes that emerged about parents’ experiences and coping strategies while raising a child with ASD. The theme “A road map to coping with ASD” was used in this article to map out guidelines for practitioners when dealing with parents of children with ASD.

Conclusions: As practitioners are often the “first port of call” within the Western context when a parent is concerned about their child’s development, they can play a valuable role in the lives of parents who present with vulnerability, by providing timely psychosocial support. This article provides practitioners with guidelines to care for these parents.

Keywords:

• autism spectrum disorder
• parents
• practitioners

Introduction

Autism spectrum disorder (ASD) is a childhood developmental disability that is ranked as one of the most stressful for parents to cope with.¹ The combined problems of limited communication, emotional expression and asocial behaviours place tremendous stress on the families of children with ASD, particularly the parents.¹ Lack of public awareness around ASD, inappropriate labelling of children with ASD as disobedient, lack of support during the diagnostic period, and lack of suitable schooling options are some of the stressors parents face daily.²

Previously in the Diagnostic and Statistical Manual of Mental Disorders IV, ASD was characterised by a triad of impairments in social interaction, communication and restricted, repetitive and stereotyped patterns of behaviour, interests and activities.³ The new edition, DSM-V, published in May 2013, has collapsed the social interaction and communication components into one category, thereby creating a classification of ASD with two sections rather than three.³ The nature and severity of these characteristics, namely emotional, behavioural and communication problems, impact on the stress levels and burden of care on parents of children with ASD.

Despite the prevalence of ASD having increased over the last 20 to 30 years,^4,5 the exact statistics in South Africa are unknown. Springer et al.,⁶ posit that given the US prevalence of ASD of 110 per 10 000 in 2007, South Africa has a potential pool of 270 000 people with ASD, increasing by 5000 each year. According to their research, Autism South Africa (ASA) indicates the prevalence of ASD in the country to be 1 in 150 live births.³ This significant number means an increase in the number of families and parents exposed to this burden of care.

Parents of children with ASD experience high levels of stress and depression.^7,8 Typically they experience concerns about their child’s future,⁹ restricted access to services¹⁰ and a lack of formal and informal support.¹¹ Other stressors include family conflict around issues of the child’s impairment, constricted social and recreational life, and financial strain on the parents.¹²

High levels of stress in mothers of children with ASD have been well documented,¹³ with gendered experiences being highlighted in the literature.¹⁴ Experiences of parents of children with ASD include isolation, depression, fatigue, lowered self-esteem, interpersonal conflict, and stress.^13,15,16 Specific time demands are expressed around finding child minders and other forms of respite care,¹³ as well as the demands of work and needing flexibility at work to cater for their child’s needs.¹⁷ Difficulties in accessing healthcare facilities have been raised in the literature,¹⁵ as have the difficulties in the diagnostic process.¹⁸⁻²⁰

Behavioural problems displayed by children with ASD are associated with increased parental stress more than any other characteristic.²¹ Parents experience difficulties in managing behaviours which impact on social gatherings.²² These behavioural problems dominate the family life of parents of children with ASD, and restrict social and recreational activities.²³

Due to the extremely disruptive behaviour, and lack of public knowledge about ASD, there is a high probability that parents will be stigmatised if they have a child with ASD, despite the child’s normal appearance.²⁴

The study was aimed to better understand the experiences of parents with children with ASD and to ascertain their coping strategies. These findings would serve to provide healthcare professionals with suitable intervention for these parents.

Methods

The research design was phenomenological in nature. The aim of the study was to gain deeper understanding into the lived experiences of parents with children who have ASD who attend a stimulation centre in KwaZulu-Natal (KZN), South Africa, and to explore the coping strategies they employ in caring for them.

Research site

The research was undertaken at a stimulation centre that caters for children with various physical disabilities and autism. The centre is a day centre and provides stimulation for children in the form of programmes designed by teachers and therapists.

Sample

A purposive sampling method was used as participants were selected according to specific criteria from the aforementioned venue.²⁵ The potential sample size for the study was 27 (n = 27) before the participants were recruited. However, the recruitment process yielded a sample of 11 participants (n = 11), which included eight women and three men. The sample included representation from all race groups namely black, coloured, Indian and white.

The sample consisted of biological parents of children with ASD and excluded those parents who were employed at the stimulation centre.

Data collection method

At the onset of the research project, focus groups and individual interviews were the preferred data collection method. However, logistical issues such as finding a suitable time for parents to meet for a focus group, married couples wanting to attend together and parents’ preferences in meeting one on one with the researcher made organising focus groups difficult. Finally one triad group interview, three dyad interviews and two individual interviews were used to collect data using semi-structured interviews.

Dyads and triads form the basic foundation for sociological analysis,²⁶ as most social processes can be found in these interactions which form the basis for social interactions and relationships.²⁶ These interviews allowed for greater flexibility and deeper psychological and emotional probing into the experiences of participants.²⁷

Ethical considerations such as beneficence, reciprocity, non-maleficence and informed consent were adhered to. Ethical clearance was obtained from the University of KwaZulu-Natal (ethical clearance number HSS/1189/012 M).

To increase trustworthiness, Guba has developed constructs to address the four criteria of credibility, transferability, dependability and confirmability within qualitative research.²⁸ Guba’s constructs were reflected in this research project which included member checking and reflexivity, and bracketing was used to reduce the risk of bias.

Data analysis

All interviews were audiotaped and recordings were transcribed verbatim prior to analysis. All names that appeared in the text were assigned pseudonyms in order to maintain anonymity of the participants. Inductive reasoning was used to sort and categorise the data until a small set of abstract, underlying themes emerged.²⁹ The researcher used thematic analysis to analyse the data and interpret the results by following Braun and Clarke’s recommended steps for conducting thematic analysis.³⁰

Findings and discussion

The research findings have provided valuable insights into the lived experiences and unique coping strategies of a group of parents of children with ASD from a South African context, providing knowledge for intervention and service that healthcare professionals can offer parents of autistic children.

The theme from the research, “A road map to coping with ASD”, will be explored further. The theme spoke specifically about advice and guidance that parents of children with ASD could offer to other parents, especially those starting off on the road of ASD. Parents in the study expressed the importance of practitioners’ input in their child’s medical intervention. The author proposes “sign posts” (guidelines) that have been alluded to in the data from the study. These guidelines are presented for practitioners to consider when dealing with parents of children with ASD.

The journey begins

Parents often realise intuitively that there is something wrong with their baby or toddler. They are not always able to verbalise their concerns as it is often a “knowing” that something is amiss. This knowing was described by a mother in the study:

When she [daughter] was a one year old I said something is wrong with my child and she [GP] said there is nothing wrong with your child … It’s mother instinct, it is the strangest thing … No one wants to listen to me and it was very frustrating.

The parents will start by either consulting a family doctor, paediatrician or a clinic sister to express these concerns and seek guidance. This initial contact places the medical professionals in a valuable yet highly responsible position. Their knowledge of ASD, input and guidance is vital and an important key in the diagnosis and subsequent treatment of the child.

Give regard to parents’ vulnerability

You’re dealing with this onslaught on many levels and you are feeling winded just winded, for someone just to come and say this is the path you need to take and then you start this journey of trying to get support and each door you knock on and as soon as they hear Autism they slam the door in your face, so a lot of our parents have been recipients to rejection, you don’t only feel your child has been rejected you feel you have been violated and rejected so in that sense it is a really, really tough journey and a tough journey for most parents. (parent)

The participant’s quotation above summarises the intense emotions parents experience on their path to diagnosis and intervention for their children. It is a journey fraught with confusion, frustration and isolation. As practitioners it is essential to understand the parents’ vulnerability as they seek knowledge and direction as to their child’s condition and future intervention.

The research showed that parents felt practitioners often lacked knowledge about ASD, minimised the parents’ concerns or provided a likely diagnosis in a brash manner painting a bleak picture of prognosis. These sentiments were shared by a father and mother in the following quotations.

We always knew there was a problem, we took him to all sorts of doctors what was frustrating to us was firstly they were properly through pride or not wanting to be embarrassed professionally … they would make all sorts of other diagnoses or try with all sorts of medication’ (father)

He reached all of his mile stones, even his speech came and then from around one and a half his behaviour started changing and I kept taking him back to the paediatrician and he said ‘No it’s fine it’s nothing to worry about, boys are just slow’ or the terrible twos or whatever, so eventually I got fed up when he reached three. (mother)

To this end it is recommended that practitioners can assist in alleviating this vulnerability by being honest, acknowledging the parents’ concerns and provide practical and productive feedback.

Honesty is extremely important. I think a lot of parents go through denial so when a healthcare professional says ‘Maybe I think?’ … and you say well this is what you are going to get and this is what you can experience and this is how you can get help and from my perspective as an … these are the steps that I recommend.(mother)

Parents spoke of the immense pressure they endured due to the challenges of raising a child with ASD and felt unheard, frustrated and inadequately informed specifically by general practitioners and paediatricians. The parents showed little faith in medical professionals, often seeking second opinions or receiving advice through other avenues. A positive experience noted by one couple was with their doctor. He took time to listen and made accommodations for their child within the consultation meeting. Parents need a glimmer of hope and appreciate honesty from doctors who do not know everything but are willing to work as a team.

ASD is a complex condition with new research emerging on a continual basis. Hence it is recommended that practitioners stay informed. Parents found it difficult to express what they thought was wrong with their child, frequently receiving incorrect feedback from doctors that their child would grow out of these problems. Ethically it would be advisable for medical practitioners and therapists to keep up to date with the ever-changing research in ASD, knowledge of experts in the field and resources available so as to provide parents with the support they need from the outset.

It may be beneficial to become a member of a lobbying and networking organisation within South Africa to have access to updated information on autism. There are some non-profit organisations in South Africa that provide this type of service for parents and professionals.

Consider the parents’ health and well-being

The parents need to be managed as patients as well; they are the link to the care of the child with ASD. Their worlds revolve around their children resulting in neglect for their own physical, emotional and psychological needs.

The research shows that parents need intervention and advice on managing their sleep and sleeping habits. Children with ASD have erratic sleeping patterns which include difficulties with falling asleep, waking up during the night, and waking up early in the mornings. This is shown in the following quotations from mothers of boys with ASD.

Getting up at 2–3 am in the morning, then you have this restless child for the rest of the day, then he will sleep round 4 in the afternoon and then get up at about 8, then he is not sleeping through the night.

There were days when he would reach a stage of 5 days without sleeping.

Subsequently, parents’ sleep patterns are also affected. Parents need to be warned about the impending sleep deprivation and should be adequately prepared. Providing a set bedtime routine for the children will be the start to teaching them how to fall asleep. A sleep diary can be kept by the parents to ascertain whether their children’s sleep difficulties are related to environmental, medical or anxiety problems. Spouses should be encouraged to work as a team and share the burden of sleep deprivation by taking turns in staying up with the child.

To this end, focus and attention to their marriage was a significant need, as conflict between parents caused stress in the home and a team approach proved to work best when coping with a child with ASD. This need to attend to the marriage relationship was noted in this comment from a father of two boys with ASD: “It places a huge strain on our relationship and marriage and we have just been fortunate enough to work through it and support each other.” Reminding parents of generic marriage tips such as communicating and spending time together alone would be valuable. Parents in the study also found spending time alone in their own interest, removing themselves from the “world of autism”, spending time together and connecting with friends were practical ways they could add value to themselves and their marriage.

Reassuring the parents that it is normal and beneficial to grieve will assist in their long-term healing and resilience to cope along this road. This was encapsulated in the following parent quotation:

[You] mourn for your child … but not forever. You need to also go through the grieving process … you need to and once you have gone through that you have to realize that this is your child at the end of the day … this is your child and just do the best you can.

Parents in the study spoke of “developing a rhino skin” which can be introduced and fostered by practitioners.

Provide strategies for developing a rhino skin

After years of experience as parents of children with ASD, the parents of older children shared stories about their resilience and the need to fight for a place in society for their children. Although parents may be too vulnerable at the early stages of diagnosis, it is imperative that practitioners counsel parents to be empowered and to develop tenacity in raising their child with ASD. The parents found strength within themselves to fight stigma by asserting their rights to socialisation and freedom of movement for their children. The following words of parents resonate with the resilience and fighting attitude parents develop over the years:

So I think through the years you have to make yourself strong and say, you know what, my son comes first, and I come first… so to hell with everybody. It took a lot of years for me to do that but I had to because I found myself being pulled from all directions and it’s not a good place to be. (participant)

I think initially it’s a fear of embarrassment and rejection when we take the children out … people will stare and stuff and eventually you think, my child deserves an opportunity to be socialized … you develop a rhino skin, and people just have to deal with it. (participant)

As health professionals we can encourage parents to place people’s opinions aside, educate society and proactively expose their children to different social settings. Peer counselling and attendance at support groups is advisable. As health professionals we should have a data base of parents and support groups who are willing to assist other parents. These resources can be obtained through Autism South Africa.

Limitations of the study

Firstly, the inherent limitation of qualitative studies is that you cannot generalise to bigger populations. Secondly, parents of children with ASD in rural and less resourced communities within South Africa were not interviewed and would most likely have different lived experiences and ways of coping from parents in better resourced communities. There was limited access to, and response from fathers to participate in the study, resulting in limited information on their perceptions and coping with ASD.

Conclusion

As health professionals we need to recognise parents’ vulnerability while providing knowledge in an honest manner, acknowledging parents’ concerns and providing practical and productive feedback. Practitioners need to stay informed about ASD in order to provide relevant guidance and access to resources. Consideration needs to be given to parents’ physical and mental health. Listening to parents and giving them tools to face society will reduce their isolation and reduce the effects of stigma.