A qualitative study on perspective of parents of children with autism on the nature of parent–professional relationship in Kerala,India

Abstract

This study explored the nature of relationship between parents of children with autism and professionals who provide therapy-based service for autism in Kerala, India. Thematic analysis of semi-structured interview with 21 parents of children with autism whose age ranged between 5.8 and 17.3 years helped identify three themes related to the nature of parent–professional relationship—information, responsibility, and personal growth. There was a dearth of scheduled, in-depth, and personalized one-on-one interaction between the parent and the professional. Though parents were involved hands on in their child’s training under professional direction, they remained mere information providers in decision making. The parent–professional relationship did not nurture parent’s self efficacy. This led to parents feeling inadequate to provide for their child’s developmental needs and being apprehensive about adulthood. The customary nature of parent–professional relationship observed may be a reflection of the collectivist culture in India. The need for parent-mediated interventions and for it to focus on enabling parents to break cultural barriers that might be holding them back from partnering with professionals on equal terms is discussed.

Lay Abstract

This study explored the nature of relationship between parents of children with autism and professionals who provide therapy-based services for autism in Kerala, India. Given the shortage of professionally qualified therapists and educators (particularly in the case of autism) in low- and medium-income countries, parent-mediated interventions where professionals and parents work as partners are recommended as an effective means to meet the demand. However, for parent-mediated interventions to be effective, we first need to understand the customary nature of parent–professional relationship and develop the intervention accordingly. It is within this context that parents of 21 children with autism whose age ranged between 5.8 and 17.3 years were interviewed in order to understand the customary nature of parent–professional relationship. There was a dearth of scheduled, in-depth, and personalized one-on-one interaction between the parent and the professional. Though parents were involved hands on in their child’s training under professional direction, they remained mere information providers in decision making. The parent–professional relationship did not nurture parent’s self efficacy. This led to parents feeling inadequate to provide for their child’s developmental needs and being apprehensive about adulthood. The customary nature of parent–professional relationship observed may be a reflection of the collectivist culture in India. The findings suggest that parent-mediated interventions will need to focus on enabling parents to break cultural barriers that might be holding them back from partnering with professionals as equals.

Keywords

autism India parent–professional relationship qualitative research therapy

Research over the past few decades has provided substantial evidence regarding the importance of parent–professional partnership in determining outcomes in therapy and educational support provided for children with special needs (Case 2001; see Dempsey & Keen, 2008, for a review), including children with autism (Brookman-Frazee & Koegel, 2004; Casagrande & Ingersoll, 2017; Gupta & Singhal, 2005; Koegel, 2000; Moes & Frea, 2000; Moh & Magiati, 2012). The concept has acquired a near indisputable status with government policies and legislations in many developed countries encouraging collaboration between parents and professionals and in some cases making it mandatory (Blue-Banning et al., 2004; Keen, 2007).

Changes in how disability and parental roles are perceived have led to new models of parent–professional partnership (Keen, 2007) with each successive model illustrating an increase in parental involvement and empowerment (Case, 2000; Jones, 2004; Kalyva, 2013). Cunningham and Davis (1985) described models where the parent could be invisible (obstructive model), a passive recipient of services (expert model) or involved hands on but under the instruction of professionals (transparent model). According to them, the consumer model was a turning point because it acknowledged that parents have specialized knowledge and skills that professionals might lack and called for knowledge sharing between parents and professionals as well as for parents to have the right to decision making. The empowerment model (Appleton & Minchom, 1991) goes a step further and places the onus on the professional to work with the entire family assisting them gain confidence in their capability to make decisions. Since true partnership involves joint decisions, negotiation model considers negotiations between parents and professionals to be a key element in the partnership (Dale, 1996). Thus, a good working relationship based on cooperation and collaboration forms an important aspect of parent–professional partnership. However, an ideal partnership will involve professionals negotiating with the entire family with the aim of empowering them to take control over decisions that affect their and their child’s life (Dempsey & Dunst, 2004; Dunst & Dempsey, 2007).

The benefit of an empowering parent–professional partnership is theoretically more or less established. However, putting theory to practice has proved to be challenging on account of factors like unequal power relationship causing disparity in the value given to parental and professional knowledge, parent’s experience of pressure to conform to professional expectations, lack of open communication (Hodge & Runswick-Cole, 2008), differences in parental needs and inclinations (Mittler et al., 1986), reduced sensitivity to cultural differences (Kalyanpur & Harry, 1999), and differences in the lived experience of parents and professionals (Sheehey & Sheehey, 2007).

Kalyanpur et al. (2000) assert that the mandatory parent–professional partnership espoused in Individuals with Disabilities Act, 1990, in the United States is based on the core values of equality, individual rights, and choice which are a reflection of an individualistic culture where feeling of entitlement, personal responsibility, and choice are understood and accepted. Research on parent–professional relationship in collectivist countries reveals a different perspective. Daley (2004) observed that doctors in India are considered “next to God.” This reverence along with the high power distance (Hofstede, 1980) seen in the cultural milieu in India might color the parent–professional relationship. In Divan et al. (2012), a mixed pattern of positive and adverse experiences was reported by parents of children with autism in their interaction with health professionals in India, with the positive being of a mentoring nature rather than on equal ground. Ravindran (2012) found that some parents of children with autism reported a collaborative partnership with professionals. Interestingly, although many parents wished better communication with the professionals, they did not seem to expect equality (Kalyanpur & Gowramma, 2007; Ravindran, 2012).

The economic context too plays a major role in parent–professional relationship. In lower- and middle-income countries (LMICs), including India, where there is a shortage of trained professionals and where high costs are involved in obtaining their service, parents may not have a choice but to be their child’s therapist. It is estimated that there are about 1.7 to 2 million people with autism in India (Mahapatra et al., 2019). Poovathinal (2016) conducted a community-based survey in a semi-urban area in central Kerala (in southern India) and reported a prevalence of 23.3/10,000 in the age group 1 to 30 years. These statistics indicate a high demand for professionals working in the field of autism. Unfortunately, educational and therapeutic services are poor, scattered, and uncoordinated even in urban, cosmopolitan cities in India (Aluri & Karanth, 2002). This issue is all the more intensified in the case of autism. Both mainstream and special schools in India are ill equipped to effectively include children with autism as most educators have training in handling special needs in general and are at a loss when it comes to meeting the unique needs of children with autism (Barua et al., 2017). Given this scenario, many of the larger organizations in India which provide educational and therapy-based support for autism opt for parent-mediated programs in an attempt to widen their reach. Divan et al. (2012) recommended the need to develop low-cost models that is not based on front-line interventions but collaboration between trained community workers and parents. Such interventions will need to be sensitive to parent’s understanding of and expectations from the partnership. Thus, in this study, parents of children with autism in Kerala were interviewed regarding their experiences with professionals whose service parents seek on a regular, long-term basis (for at least 1 year). Professionals mentioned by the parents included psychologists, speech and language pathologists, occupational therapists, special educators, and medical practitioners like pediatricians and neurologists. Practitioners of alternative medicine like Ayurveda and Homeopathy were mentioned by the participants but not considered in this study. The aim of the study was to understand the customary nature of parent–professional relationship. Given the cultural context, one might expect professional authority and parental compliance. But the need for parents to take a bigger responsibility in carrying out the recommended interventions might change the culture-based equation and push parents to become “lay experts” (Ho et al., 2014).

Method

Setting

The study was conducted in the state of Kerala in India. Kerala is acknowledged for its high human development, with health and education indicators for men and women comparable to some of the developed countries (Economic Review, 2016). This study was conducted at the Center for Research and Development of Autistic Children (CRDAC) based in the city of Kozhikode in Kerala. CRDAC is a resource center for children with autism under Sarva Shiksha Abhiyan (SSA), a scheme sponsored by India’s Central Government and carried out in partnership with state governments with the goal of universalizing elementary education. CRDAC was established to provide free educational and pre-educational support to children with autism up to 18 years of age. The support is provided in the form of individual sessions of 1 h duration. The number of sessions given per week varies between children. As the first and only government-run center in the city to exclusively cater to the educational needs of children with autism, parents from a range of economic backgrounds from different parts of the district seek their service.

Participants

The researcher selected a total of 25 participants using purposive sampling from a list provided by CRDAC of children who were visiting the center at least once a week for individual sessions. Within the relatively few research in India, parents belonging to the lower socioeconomic status are often underrepresented (Daley, 2004; Divan et al., 2012; Kalyanpur & Gowramma, 2007). In this study, purposive sampling was used to ensure that parents from different socioeconomic backgrounds were included (see Table 1). This factor apart from data saturation determined the final sample size of 21 participants (1 grandmother, 2 fathers, and 18 mothers). Although there was one grandparent, the term “parent” is used in this article for consistency. All the children had received a diagnosis of autism from a medical or rehabilitation professional. The diagnosis was not reconfirmed independently by the researcher. But, it was ascertained during the interview that parents understood and accepted that their child had a diagnosis of autism, and they were seeking professional support for autism. Sixteen of the children were male and five were female. Their age ranged between 5.8 and 17.3 (mean = 11.86, SD = 2.52) years.

Table 1.

Participant details.

Participant(caregiver interviewed)	Age of child (years; months)	Gender of child	Religion	Parental (years of formal) education		Parental occupation		Family and siblings
				Father	Mother	Father	Mother
P1 (Mother)	12; 2	F	Hindu	10	13	Driver	Housewife	Nuclear, single child
P2 (Mother)	10; 9	M	Hindu	10	15	Tailor	Housewife	Nuclear, elder sister
P3 (Mother)	13; 6	M	Muslim	10	12	Crane Operator	Housewife	Nuclear, two elder brothers, Middle child has special needs
P4 (Father)	12; 5	M	Muslim	12	13	Business	Housewife	Extended (with maternal grandfather), Younger sister
P5 (Mother)	11; 7	M	Hindu	15	15	Police	Housewife	Nuclear, elder brother who has special needs
P6 (Mother)	13; 3	M	Muslim	16	15	Engineer	Housewife	Nuclear, elder sister
P7 (Mother)	5; 8	M	Hindu	13	15	Plant Operator (Overseas)	Housewife	Extended (with paternal grandparents), single child
P8 (Father)	17; 3	F	Hindu	15	17	Engineer (Overseas)	Teacher	Nuclear, younger sister
P9 (Mother)	12; 6	F	Hindu	15	15	Police Service	Teacher	Nuclear, younger brother
P10 (Mother)	10; 3	M	Christian	15	15	Sales executive	Housewife	Nuclear, elder sister
P11 (Mother)	15	M	Christian-Hindu	16	17	Manager	Medical transcription	Nuclear, single child
P12 (Maternal grandmother)	12	M	Muslim	12	12	Overseas	Housewife	Joint family, three younger brothers
P13 (Mother)	13; 6	M	Muslim	12	10	Manual Labor	Housewife	Joint, elder sister
P14 (Mother)	11; 6	M	Muslim	Dropout	Dropout	Manual Labor	Housewife	Joint, two elder sisters
P15 (Mother)	10	F	Muslim	10	12	Overseas	Housewife	Joint, younger brother
P16 (Mother)	9; 2	M	Hindu	15	17	Business	Housewife	Nuclear, elder brother
P17 (Mother)	10; 10	F	Hindu	15	12	Govt Service (Peon)	Housewife	Nuclear, elder brother
P18 (Mother)	8	M	Christian	15	15	Business	Housewife	Nuclear, twin sister and younger brother
P19 (Mother)	11; 5	M	Hindu	15	15	Police Service	Housewife	Separated, elder brother
P20 (Mother)	14; 4	M	Hindu	16	17	Engineer	Housewife	Nuclear, single child
P21 (Mother)	13; 5	M	Muslim	15	15	Technician (Overseas)	Housewife	Nuclear, one younger brother and sister

Among the participants interviewed, 4.76% each were school dropouts, completed 10 years or 13 years of formal education; 47.62% had completed 15 years of formal education; and 14.29% had completed 17 years of formal education. A majority of the participants (90.48%) interviewed were housewives while 4.76% each held a white-collar or blue-collar job. Family type (14 were nuclear, six were joint, and one was a single mother who lived with her parents) and family size (four families had one child, 13 had two children, three had three children, and one had four children) varied, and three families had more than one child with a developmental disability.

Procedure

The researcher obtained prior permission from the Project Officer of SSA for carrying out the research at CRDAC. The interviews took between 30 and 45 min and were conducted in the local language, Malayalam, while the parent waited for their child who was in session with the support teacher. An interview schedule consisting of open-ended questions organized into four parts (identification process, experiences related to education and therapy-based services, parental understanding of autism, and parental understanding of therapy-based support) guided the semi-structured interview. Given the possibility that the parent would be uncomfortable being openly critical, the researcher used prompts to explore in depth the role of and interaction between the parent and the professional during the course of therapy as a means of understanding the nature of parent–professional relationship.

Data analysis

The researcher, who is bilingual, transcribed the interview verbatim into Malayalam and carried out thematic analysis on the transcript manually using Microsoft Excel. Thematic analysis was informed by Braun and Clarke’s (2006) six-step framework and was inductive. The segments of the data that were relevant or captured anything relating to the role of parents and professionals, or their interaction in the context of therapy, were coded using open coding for the entire transcript. The codes were then examined to identify broader themes and subthemes. The codes were in general descriptive, and the themes and subthemes were inferred. The themes and subthemes as well as the codes under each were finalized after it was ensured that the data supported the theme and was coherent and distinct.

As described by Chen and Boore (2010), the data were analyzed in the source language, and translation procedure carried out only on the analyzed data. The codes, themes, and selected extracts were translated into English independently by the author and by a colleague, an assistant professor in psychology, who too is bilingual. Any discrepancies between the two were discussed, and a final translation was arrived at jointly. See Table 2.

Table 2.

Codes, themes, and subthemes identified.

Themes	Subthemes	Codes
Information	Access to information	Source of information Closed door sessions
Information	Communication	Diagnosis and referral Briefing
Responsibility	Doing	Hands on School issues
Responsibility	Interaction	Enquiry Instruction Decisions
Personal growth	Confidence	Parenting skills
	Knowledge	Features and causes Therapy
	Apprehensions	After me What next

In the absence of an independent coder, validation of the results was carried out using member checking. Since the purpose of the member check was to explore whether the interpretations drawn by the researcher reflected the participants’ experience, the analyzed data from the whole sample were used. It was not possible to interview all 21 participants due to practical constrain of time as well as nonavailability of space at CRDAC. Hence, the researcher selected five parents (P8, P11, P13, P14, and P20 in Table 1) based on two criteria: (a) their child had been receiving therapy based support for at least 5 years and (b) they hold or had held an official (elected, unpaid) administrative position in the parent association that was in function. It was expected that the first criteria would provide parents with a range of experiences that would enable in-depth personal reflection while the second criteria would provide them with experiences of representing parents in different forums and thus enable them to reflect on parental experience in general. Participant willingness was ascertained through telephone, following which face-to-face or telephone interaction (one parent) was arranged according to the parent’s convenience. The face-to-face interviews were conducted at CRDAC as before. A handout, in English and Malayalam, containing the themes, subthemes, and major interpretation (the last paragraph under each theme in the result section) was given during the interview (emailed in the case of telephonic interview) to participants. The researcher explained each interpretation to the parent using the codes as a framework in simple language. Parent’s feedback was obtained on the accuracy of the interpretation as a reflection of their personal experience as well as parental experience in general. Though parents did describe individual incidences (their own and others) as exceptions, all were in agreement regarding the accuracy of the interpretation in general. Since three parents reiterated the relevance of individual differences, an attempt was made to ensure that consensus was enumerated, and contradictory perspectives were explicitly stated before generalizing.

Ethical consideration

In the absence of a formal ethics code for conducting research in social science and institutional ethics committee, the researcher developed an ethics code based on the guidelines established by the National Committee for Ethics in Social Science Research in Health & Center for Enquiry Into Health & Allied Themes (2004) which was strictly adhered to throughout the research. Approval for conducting the research was obtained from Indian Council for Social Science Research (ICSSR) and Indian Institute of Management Kozhikode (IIMK).

Researchers have reported about ethical and methodological challenges like ascertaining privacy for interviews, obtaining signatures on consent form, ensuring that consent is truly informed, and navigating the power relations that inevitably come to play as a result of top-down decision or respect for people with higher educational qualification (Riessman, 2005; Yan & Jament, 2008) when carrying out research in the global south.

The researcher took all possible steps to mitigate some of the above possibilities. The interviews were conducted in a room that offered adequate privacy. In order to ensure that parents do not feel pressured to participate, the researcher and not the resource teacher approached the parent in the waiting area of the center. It was explicitly explained that the research was not being conducted by CRDAC. Nevertheless, it is possible that knowledge about the academic background of the researcher could have influenced consent. Data collection began after obtaining written informed consent for doing the interview from each participant. The consent form briefly explained the purpose of the study, assured confidentiality in data collection and dissemination of finding, the right to withdraw from the study anytime, and the right to demand that the audio recording be stopped anytime during the interview. The process of obtaining consent as practiced in the West is an alien concept in some Eastern countries (Yan & Jament, 2008). Though the researcher explained about consent, one cannot be absolutely certain that all the participants truly understood consent as more than simple participation in this research.

Result

Thematic analysis of the interviews identified three themes, namely, information, responsibility, and personal growth as underlying the customary nature of the parent–professional relationship. These three themes are discussed below.

Information

For 16 children, the initial diagnosis was made by a pediatrician. For the others, the diagnosis was made by a psychologist for three, by a speech and language pathologist for one, and by a neurologist for one. The medical professionals mention autism spectrum disorder (ASD), pervasive developmental disorder (PDD), or autism on the prescription slip and refer them to a therapy center or special school. Though the doctors were described as quick to console, information given about autism and what to expect was nil or rudimentary. According to a parent,

Therapy began when he started school. He was 6 years old. Years before the doctor [neurologist who was treating the child’s epilepsy] had written autism [on his prescription slip]. But we didn’t take him for therapy. We were not given much explanation about what this [autism] is or what should be done. Nothing was explained. Eventually we took him to school and admitted him. His teacher told us to bring him here [CRDAC]. Here, the special educator told that this child requires therapy, with therapy there will be a lot of improvement.

Awareness classes and workshops conducted by external experts (professionals not working with the child) were mentioned as the source of information by 19 parents. Parents mentioned informal sharing of information between them and reported that, though rare, magazines and radio and TV programs did features on autism. The use of Internet as a source of information was mentioned by only seven parents.

Generally, therapy happened behind closed door. After a session, which is usually for one hour, a quick feedback about how the child was during the session as well as instructions for activities to be done at home might be given. Sixteen parents said that they would enquire if feedback was not provided. Fourteen parents reported not being happy with the closed door approach to therapy. According to one parent, not being able to be part of the session and observe the session denied parents an opportunity to watch and learn. On the contrary, three parents felt that their child might be distracted if they were in the room. However, another pointed out,

The therapy session has to be shown to the parent for their satisfaction. There is no logic in saying that you cannot see the session when parents are paying for it. What they should do is make a provision so that the child cannot see the parent but the parent can see the child. Especially because there are some issues—children are treated very badly and they [the children] don’t come out and tell either.

Thus, as far as information is concerned, the nature of parent–professional relationship was characterized by a dearth of scheduled, in-depth, and personalized one-on-one interaction between the parent and the professional. Even though parents appreciated professionals who took the initiative to interact with them, the professionals were not obliged to do so.

Responsibility

There appears to be a clear divide in parental and professional roles within therapeutic and educational spaces. Parents checked how a session went, sought solutions to specific problems, informed the therapist of the child’s development, and asked for clarification regarding doubts and concerns. Professionals, on the contrary, provided feedback, prescribed activities, suggested solutions, dictated recommendations, and endorsed decisions. Professionals sought information from parents but rarely took the opinion of the parent when they set therapy goals. According to one parent,

They [professionals] tell us. They don’t ask our opinion. They tell us what activities to do at home. They tell us how to teach. After the session, they tell what the child did that day and also what we are expected to do at home.

The more vocal parents who asked for feedback said that they had at times requested the professional to focus on a particular difficulty (like buttoning or addition) the child had or suggested that “they be patient with the child because if the child gets upset he will not comply and that session will be a waste.” Nevertheless, a professional having the final say was acceptable to all parents provided that the parent’s wants were taken into account. Eighteen parents endorsed that the professional has the expertise to decide if a parent’s demand was practical or not.

Working with the child on activities prescribed by the therapist was accepted as a primary responsibility by all parents. However, individual differences existed in the extent to which parents reported being able to do so. Five parents said that they were unable to work with their child. The reasons given were lack of support at home, other responsibilities, and noncompliance on part of the child. One parent commented,

Parents must put in effort. In fact, parents are the ones who should put in the most effort. Teachers have a limit, in terms of time. If we do the same [what is done during the therapy session] at home there will be improvement. I know many children who have shown improvement like that. I feel sad that I am unable to do so because he doesn’t listen to me.

Parents often had to be available hands on at school too. Among 17 children who attended mainstream school, 11 had mothers who sat in the class with them or just outside the classroom. As a result of the work done by SSA, in the area of integration, and the Right to Education Act, 2009, many children with special needs are enrolled in mainstream school. While the attempt at integration is commendable, there is much to be desired. Parents reported a lack of systematic effort to engage their children in the lessons. Children were often sitting in the class that was appropriate for them based on chronological age and not based on academic functioning. Furthermore, therapy and educational support was provided during school hours in centers not attached to the school. Hence, parents were not motivated to keep their child in school the whole day. One parent lamented,

When a teacher is in class, I wish they would spend just five minutes to teach the child. They let her do whatever she wants. I tell the teachers to give her five minutes worth of work at least, that she does many things at the therapy center. But she [the teacher] doesn’t do anything.

Parents looked at school as an opportunity for their children to socially mingle with peers. However, this too happened under parental supervision. A parent described,

I make him play with the other children. Not everyone will play with him. What to do? So, I started playing running and catching [Game of tag] along with the other kids and slowly including my son. In the end [laughs] the kids started saying J needn’t play but J’s mother should play.

Even in the case of children who sat independently in class, parents continued to feel the responsibility. According to one parent,

I got fed up with the normal [sic] school because I never used to get rest. I didn’t know when I will get a call. If another child cries, S gets disturbed and I will get a call. The school was very cooperative. But the teachers weren’t trained. So one day I decided I will not send him to a normal school and shifted him to this special school where he is going now.

Thus, though parents took on a major share of working hands on with their child and were held responsible for their child in mainstream schools, they were relegated to the role of information provider when making decisions relating to therapeutic and educational goals. The professional had the final say in the matter. Parents were not confident about being part of decision-making process as an equal either.

Personal growth

There appears to be a mismatch between what can be described as an intuitive individualized understanding of one’s child and an explicit general awareness about autism. All parents reported becoming more and more capable over time managing the challenges that they face in everyday activities, taking public transport or attending social gatherings.

However, parents were not as confident about their understanding about autism. Parent’s description of autism focused on one or two aspects of their child’s behavior. Phrases like “cannot interact with people,” “can’t understand feeling,” “all sorts of mannerisms and hyper [hyperactive],” “a lifelong condition,” “not attending and no speech,” and “won’t eat rice” were used. Many parents used the word “avastha” (meaning condition) for autism. On further enquiry, it was evident that they understood the concept of “avastha” as “being lifelong.” Parents agreed that therapy and training were a must for their child’s development. However, 17 parents were unable to describe the rationale behind particular therapies which were being provided for their child except in vague terms like “because he is hyper,” “because he gets angry.” One parent explained as follows:

I don’t know. I don’t know about any therapy properly. That is the reality. When I went there [center] they said OT [Occupation Therapy] is good for children with autism, OT should be given, so they gave. Regarding speech, his words were not clear. He speaks, it is not that he doesn’t speak, but what he says is not in order. That can be corrected with speech (therapy). Special (education) is given because he can’t write; he doesn’t even know how to hold a pencil.

The uncertainty about whether a particular behavior was a random behavior or possibly because of autism put parents at a disadvantage. One parent shared,

My son would throw tantrums when I go on describing things to him as we travel in the car like the speech therapist had suggested. He doesn’t like so much of talking. It upsets him but I still try thinking it will get him to speak.

Lack of opportunity for parents to link what they know about their child with academic understanding of autism limited parental confidence. For example, 19 parents reported low confidence in initiating a new learning process saying, “If the therapist would initiate [any new activity] and give, I can then take it forward.” Parents attempted to compensate for this inability by gaining “therapy time” for the same therapy at more than one center. However, there was no system to co-ordinate between centers and therapists. This, along with the belief that there was a “package of therapy”—speech, occupational, behavioral training and special education—that a child with autism must have, results in “center hopping” which takes a toll on parents in the form of disappointment and burnout. A parent said,

We have tried to give him training [sic] to our maximum ability with the aim to somehow remove this [autism]. We gave training that he needs till 10 years. After 10 years I was tired, not able to take him to regular classes [at school] even.

All parents feared about what would happen when they were no more. Parents of teenagers were worried about the immediate future too. They said that “what next” constantly came up in their conversation with one another—an apprehension they shared with the professionals who worked with their child. Unfortunately, this was not a focus in any therapy.

Hence, as far as personal growth was concerned, the parent–professional relationship does not work toward making parents future ready. Though parents gained confidence in managing their child on a day-to-day basis, their self efficacy was not nurtured. They felt incapable of providing for their child’s developmental needs which resulted in feelings of helplessness and apprehension about adulthood.

Discussion

In this study, parents of children with autism in Kerala were interviewed with the objective of exploring the nature of parent–professional relationship. Three themes—information, responsibility, and personal growth—were identified.

With respect to information, it was found that in-depth conversations catering to the idiosyncratic informational needs of the individual parent were rare. This is unfortunate because as reported by Ilias et al. (2018) in their review of literature from Southeast Asia, professionals played a crucial role in providing informational social support to parents of children with autism which in turn had an attenuating effect on parenting stress. Cultural influences like familial and societal attitudes toward disability, a milieu of professional authority, and inadequate facility for information dissemination lead to lack of accessibility to information being a primary concern among parents of children with special needs, especially in developing countries (Kalyanpur & Gowramma, 2007). In this study, the minority of parents who had a more comprehensive understanding of autism were the ones who also reported using Internet as a source of information.

In terms of responsibility, parents were responsible for doing hands-on work with their child as directed by the professional. However, with respect to decision making, parent’s knowledge of the child was taken into account only as supplementary information; their opinion was rarely asked for. Parents having to shoulder the responsibility to meet the educational and therapy-based needs of their children with autism is not uncommon in developing countries with poor infrastructure and high demands (Brezis et al., 2015; McCabe, 2007; Minhas et al., 2015) and disparity in the professional voice being given more value (even by the parent) as the expert has been identified as one of the factors which hinder parent–professional partnership (Hodge & Runswick-Cole, 2008). In this sample, parents reasoned that though they can provide valuable information as they know their child, it is the professionals with their expertise in autism who understand their child better.

With regard to personal growth, lack of opportunity to develop a credible knowledge base that incorporates their intuitive understanding about their child and factual understanding about autism negatively affected parent’s self efficacy. A truly enabling parent–professional relationship would work toward enhancing parental self efficacy. Brookman-Frazee and Koegel (2004) reported that a partnership-based parent education model that allowed for parents to be actively engaged in finding solutions to problems was more effective in achieving self-efficacy than a clinician-directed model. For this group, parent–professional relationship stopped short of ensuring that parents were empowered with knowledge about their child’s condition, made capable in problem solving, and partner in decision making.

Overall, the customary nature of parent–professional relationship showed elements of the transparent model (Cunningham & Davis, 1985) where parents are active as information seekers and providers and are involved hands on in their child’s training and therapy under the professional’s direction. This could be a reflection of the cultural (collectivist as opposed to individualistic) and economic (LMIC as opposed to high-income country (HIC)) background.

Global disparity in accessing evidence-based care is alarming (Patel, 2012). A potential means for bridging this gap in management of autism in low-resource areas is parent-mediated interventions which aim to empower people who are already caregivers (Divan et al., 2012; Gillespie-Lynch & Brezis, 2017). Of late, many parent-mediated interventions developed in HIC are being successfully implemented in LMIC following adaptation. While adapting the UK Preschool Autism Communication Therapy (PACT) to the Indian context, there was concern that parents were used to directive approach from the clinician than reflective thinking that was required for collaboration. However, parents were able to overcome this potential challenge using video playback (Divan et al., 2015). Thus, parent-mediated interventions have the potential to succeed in empowering parents, provided empowerment be seen as a gradual process where professionals hand-hold in the initial phase being mindful of differences in the amount of support and type of approach required by parents to break cultural barriers that might be holding them back. This can ensure that parents do not feel pressured to engage at a level they are not confident with while at the same time have access to the support needed to build their confidence. The findings from this study indicated that many parents are possibly half way there in terms of considering themselves as predominantly responsible for their child’s development. But, because professionals are not obliged to ensure that parents were given detailed information or that their skills and expertise were transferred to the parent, they did not become “lay-experts” (Ho et al., 2014) who can partner with the professional on equal terms as envisioned by the empowerment model (Appleton & Minchom, 1991) or negotiating model (Dale, 1996).

This study has the limitation that the sample was curtailed to a very specific and small geographical location. It is possible that the experience of parents in other parts of Kerala might be different. For example, a couple of parent-run organizations are present in some of the other districts of Kerala, and the option for autism-specific special schools is also available, though very few in number. These added facilities might make a small but concrete difference to parental experience and expectations. A second limitation is that the study does not dwell into the reasons behind the gap. Professional perspective will need to be taken into consideration in order to complete the picture. Notwithstanding, this study identifies a gap between the customary nature of parent–professional relationship and the ideal partnership as envisioned by the empowerment and negotiating models. Any parent-mediated intervention will need to identify means to close this gap.

Footnotes

Acknowledgements

Special thanks to AF Mathew for supervisory guidance, T Renjini for translation and Ashok R Chandran for proof reading. The support provided by the staff, teachers, and parents at Center for Research and Development of Autistic Children (under Sarva Shiksha Abhiyan, Kozhikode) is gratefully acknowledged.

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Ethical approval

Approval for conducting the research was obtained from Indian Council for Social Science Research (ICSSR) and Indian Institute of Management Kozhikode (IIMK).

Funding

The author disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This research was supported by a Post-Doctoral Fellowship from Indian Council for Social Science (ICSSR), New Delhi, India.

ORCID iD

Rajani Ramachandran

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