Research in Developmental Disabilities 111 (2021) 103884

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Research in Developmental Disabilities

journal homepage: www.elsevier.com/locate/redevdis

A parent-sibling dyadic interview to explore how an individual

with Autism Spectrum Disorder can impact family dynamics
Emma Critchley *, Michelle Cuadros , Ina Harper , Harry Smith-Howell ,
Miles Rogish
Department of Psychology, University of York, Heslington, York, YO10 5DD, UK

A R T I C L E I N F O A B S T R A C T

Keywords: Background: Autism Spectrum Disorder (ASD) is a life-long condition which affects the individual
Autism Spectrum Disorder and their family system. Little research understands the impact of an ASD upon families, how this
Family dynamics may change over time and how COVID-19 has impacted these dynamics.
Interpretative phenomenological analysis
Aims: To explore the impact of an ASD on the lived experiences of parents and neurotypical adult
COVID-19
siblings, including during the UK COVID-19 lockdown.
Methods: Eight parent-sibling dyads (16 individuals) completed semi-structured interviews dis­
cussing their family before, during and after receiving the ASD diagnosis, and in relation to the
first UK lockdown. Interview transcripts were analysed using Interpretative Phenomenological
Analysis.
Results: Three super-ordinate themes were identified: Dominated by ASD; Family Cohesion; and
the Need for Support.
Conclusions: The data suggested a closeness within the families and an adoration towards the
individual with ASD (IWA). Dyads were, to an extent, consumed by the diagnosis both presently
and in the future, implicating the need for a stretch in services to support parents and neuro­
typical siblings. In terms of the first UK lockdown, the IWA added an extra layer of difficulty to
the dyads work-life balance yet there was an essence of family cohesion. Future research should
consider longitudinal methods and explore the impact of ASD co-morbidities upon family
dynamics.

What this paper adds

This article explores how parents and neurotypical adult siblings describe their lived experiences with respect to their family
member with an ASD. The data suggests that all family members are impacted by ASD both surrounding the diagnosis process, and in
the long-term; this has an effect upon the family’s well-being and their support systems. Neurotypical siblings have an awareness of
their increased responsibility in the family and acknowledge their potential roles in the future.
The research presents a relevance to services surrounding ASD with a call for more support to be given to the wider family. Parents
and neurotypical siblings describe an adoration for the individual with an ASD and emphasise wanting them to achieve their potential
yet without adequate support and encouragement for the family, parents and neurotypical siblings can find difficultly in providing
effective support. In addition, this research was conducted during the first UK COVID-19 lockdown and hence gives an insight into how

* Corresponding author.
E-mail address: [email protected] (E. Critchley).

https://doi.org/10.1016/j.ridd.2021.103884
Received 11 October 2020; Received in revised form 20 January 2021; Accepted 25 January 2021
Available online 5 February 2021
0891-4222/© 2021 Elsevier Ltd. All rights reserved.
E. Critchley et al. Research in Developmental Disabilities 111 (2021) 103884

these families dealt with the intricacies of supporting an individual with an ASD during uncertain and unprecedented circumstances.
Thus, novel findings are presented within this research article.

1. Introduction

With characteristics around restricted, repetitive behaviours and deficits in social communication and interaction, Autism Spec­
trum Disorder (ASD) is a pervasive neurodevelopmental disorder under the DSM-V (American Psychological Association, 2013). ASD is
heterogeneous in nature as its characteristics and severity differ between individuals ranging from mild to severe (Rea, LaMotte, &
Burrell, 2018). The disorder accounts for 11 % of individuals with Special Educational Needs in England (Department for Education,
2019) and this life-long condition not only strains educational resources, but also the families emotional and financial resources
(Cridland, Jones, Magee, & Caputi, 2014). Family dynamics are defined by the pattern of relationships which influence the family’s
structure, behaviours, beliefs and values (Factor et al., 2019) yet there are inconsistencies in the literature regarding the nature of
family dynamics where an ASD is present. Some articles describe these families as having ‘lifelong burdens’ (Hartley, Barker, Seltzer,
Greenberg, & Floyd, 2011; Karst & Van Hecke, 2012) whereas others describe positive family experiences including resilience,
tolerance and family closeness (; Kayfitz, Gragg, & Robert Orr, 2010). To give more clarity to the area, it is important to explore the
family framework focusing specifically on the experiences of parents and neurotypical siblings of individuals with an ASD (IWA).
The coronavirus disease (COVID-19) brought challenges and uncertainty to many families during 2020 (Prime, Wade, & Browne,
2020). Due to uncertain changes in the environment, societal expectations, and ability to receive support, individuals with special
educational needs, specifically ASD may have had unique responses to the pandemic (Bellomo, Prasad, Munzer, & Laventhal, 2020). A
recent study found that individuals with ASD had difficulties comprehending the virus and implementing the government guidance,
including maintaining social distancing and increased hygiene (Mutluer, Doenyas, & Aslan Genc, 2020). Research is beginning to
understand the impact that COVID-19 has had upon IWA, yet how family dynamics have been impacted remains unknown. An element
of the current study considers the ASD family framework in line with the COVID-19 pandemic.
The ASD diagnosis process can be complex and time consuming. On average in the UK, it takes 3.5 years between seeking pro­
fessional help and obtaining an ASD diagnosis (Crane, Chester, Goddard, Henry, & Hill, 2016) leaving parents with a plethora of
emotions including guilt (Legg & Tickle, 2019), stress (Siklos & Kerns, 2007), and dissatisfaction or frustration with the support given
by professionals (Crane et al., 2016; NAS, 2019). Parents felt that their perspectives were misunderstood by the experts, and that a lot
of their time and energy was focused in gaining answers about their child (Gray, 2018; Legg & Tickle, 2019). In families with multiple
offspring, the concentrated attention towards the child with a suspected ASD may push the neurotypical child(ren) aside or make them
‘unseen’ (Noonan, O’ Donoghue, & Wilson, 2018), regardless of their birth order (Chan & Goh, 2014). This impacts the neurotypical
child(ren)’s development, often requiring them to become more autonomous, having higher responsibilities within the family. This is
commonly known in the literature as parentification (Nuttall, Coberly, & Diesel, 2018).
After acquiring an ASD diagnosis, research suggests that the experience of parents is mixed (Rabba, Dissanayake, & Barbaro, 2019).
Some felt bereaved, feeling ‘directionless’ (Crane et al., 2018) and requiring more support than pre-diagnosis (Legg & Tickle, 2019).
Others felt relieved, that they could learn to understand their child’s idiosyncrasies, and have evidence to explain their child’s
behaviour to others (Gray, 2018). It was highlighted that some parent’s acceptance towards the diagnosis was attributed to time
(Evans, 2010) and an increase of knowledge around the condition (Legg & Tickle, 2019). For example, 11 % of fathers sought in­
formation from books, attended courses and participated in other relevant events (Potter, 2017). However, as stated previously, not
only are the parents and the child with an ASD affected by the diagnosis but also all family members, including the neurotypical
siblings (Cebula, 2012).
It is therefore important to give light to a theoretical model around sibling experiences: The Sibling Embedded Systems Framework
(Kovshoff, Cebula, Tsai, & Hastings, 2017). This suggests that, where an ASD is present, neurotypical siblings (subsequently, just
‘siblings’) have an active role in building the family environment. Sibling relationships provide early social interaction experiences
and, due to their longevity, there are substantial opportunities to bi-directionally influence development (McHale, Updegraff, &
Feinberg, 2016). According to the framework, sibling’s response to events of the IWA can be attributed to many ‘within sibling’ factors
including sibling resilience, self-esteem, coping strategies, and their demographic predisposition. Some evidence implies that siblings
have a negative childhood as a result of the IWA, reporting that siblings have high levels of dysphoria (Shivers & McGregor, 2019), that
they feel ‘embarrassed’ by the IWA (Ludlow, Skelly, & Rohleder, 2012), and that they have less opportunities for their own extra­
curricular activities (Barak-Levy, Goldstein, & Weinstock, 2010).
Nonetheless, it was highlighted that adolescent siblings have both positive and negative reactions towards their sibling with an ASD
(Petalas, Hastings, Nash, Reilly, & Dowey, 2012). Semi-structured interviews indicated that although it was physically and emotionally
difficult to grow up with an IWA, siblings expressed an appreciation for the individual and acknowledged their development. The
siblings recognised that their peers and the wider society often misunderstand the IWA, leading to both a frustration and disap­
pointment in others, and concerns for the IWA’s future (Petalas et al., 2012). Other research suggested that social support increased
positive outcomes in adapting to challenges of an IWA (Cebula, 2012). Hence, the Sibling Embedded Systems Framework emphasises
the duality of positive and negative outcomes for siblings in families with an ASD, highlighting the individual nature of sibling re­
sponses (Kovshoff et al., 2017). Consequently, qualitative research around the lived experiences of both siblings and parents is
fundamental in providing more clarity on the changes and challenges to family dynamics with an ASD.
Regardless of its severity, an ASD poses many challenges for families. Families face difficulties around, but not limited to, an in­
dividual’s inflexibility to adhere to routines (Stoppelbein, Biasini, Pennick, & Greening, 2016); their unpredictable behaviour (Petalas
et al., 2012); their personal care (Cridland et al., 2014); and the additional challenges when the ASD is co-morbid with other conditions

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such as ADHD or anxiety disorders (Mademtzi, Singh, Shic, & Koenig, 2018). Not only do families face these difficulties daily, including
navigating the challenges in response to the COVID-19 pandemic (Manning, Billian, Matson, Allen., & Soares., 2020), they also face
uncertainty when planning for the future. For example, when the individual transitions into adulthood or when planning their safety if
a parent was to pass away (Marsack-Topolewski & Graves, 2020). The way in which individual family members approach and process
these challenges may vary (McHale et al., 2016; Vasilopoulou & Nisbet, 2016) and it is therefore important to gain a holistic view of the
family framework.
Parents may place an emphasis on developing the skills of the IWA, including academic skills. Yet parents have felt dissatisfied with
the support given to their children (Essex & Melham, 2019) and that they were personally in the default position for co-ordinating their
child’s school transitions (Mitchell & Beresford, 2014). They may face conflict around their child’s rights to specialist provisions
(Harris & Davidge, 2019), or these provisions may have been disrupted due to COVID-19 (Stenhoff, Pennington, & Tapp., 2020).
Parent’s ability to promote the well-being of the child with an ASD may be limited by their own emotional states and mental health
(Giallo, Wood, Jellett, & Porter, 2013). For example, parents were less likely to be emotionally stable if high levels of perceived stress
were present (Dillon, 2019). Although cautions must be made around correlational data as associations are not equivocal to causations
(Sedgwick, 2014), a systematic review found a negative correlation between stress and Quality of Life (QoL) with parents of children
with an ASD scoring lower on QoL measures than parents of typically developing children (Vasilopoulou & Nisbet, 2016). Further,
fatigue was a commonality experienced by parents of children with an ASD which had a negative effect upon parental coping strategies
(Seymour, Wood, Giallo, & Jellett, 2013). Consequently, siblings may take up greater caregiving roles within families where an ASD is
present compared to typically developing families (Nuttall et al., 2018).
Siblings may focus more on supporting the behaviours of the IWA as it may make them feel stressed or embarrassed in social
situations (Ludlow et al., 2012). A systematic review found that the IWA’s behaviour impacted siblings’ personal well-being yet there
was a feeling of protectiveness over the physical and emotional well-being of the IWA (Leedham, Thompson, & Freeth, 2020). Wit­
nessing the idiosyncratic behaviours of the IWA was upsetting for the siblings although there was an essence of self-blame amongst
these participants (Gorjy, Fielding, & Falkmer, 2017). Siblings often use their own time to help the IWA (Petalas et al., 2012),
embracing that their family is ‘different’ (Gorjy et al., 2017). Thus, often accepting a ‘double standard’ of parenting (Chan & Goh,
2014).
Research has been conducted around sibling experiences both quantitatively (Jones et al., 2019; Lovell & Wetherell, 2016; Tomeny,
Barry, Fair, & Riley, 2017) and qualitatively (Gorjy et al., 2017; Lee, Burke, & Stelter, 2019; Leedham et al., 2020), however, little
research explores the family dynamics where an ASD is present in respect to parents and siblings simultaneously, or in response to the
COVID-19 pandemic. Conducting research from more than one individual at the same time, for example through dyad interviews,
brings participants together, allowing them to interact, and potentially stimulate relevant memories or encourage expansion of detail.
This giving the researcher a more rich, detailed account to analyse (Morgan, Ataie, Carder, & Hoffman, 2013). There has been a call for
family-focused research surrounding ASD, with aims to gain an insight into the challenges and benefits that an ASD brings to families,
how this affects families holistically, and how this information can inform clinical support (Cridland et al., 2014).
One cross-cultural study using mother-sibling dyad interviews investigated the experiences of living with an IWA (Tsai, Cebula,
Liang, & Fletcher-Watson, 2018). Interpretative Phenomenological Analysis (IPA) was used, a technique underpinned by phenome­
nology, hermeneutics and ideography (Smith, Flower & Larkin, 2009) which allows for a direct interpretation of individual’s lived
experiences (Shaw, 2010). Tsai et al. (2018) found that Taiwanese dyads focused on societal judgement and a lack of social support.
Whereas the UK dyads reported family resilience with a thirst for gaining support and knowledge around ASD. Albeit insightful, all of
the parents were mothers, opening a gap in the research around father’s experiences. There was a lack of understanding in how
mothers and siblings appraised their experiences of living with an IWA, and whether this was different for the mother and sibling.
Hence, and focusing on a purely UK sample, the current study aimed to breach some of the gaps outlined by Tsai et al. (2018).
Exploring parent-sibling dyads, this study aimed to use a qualitative approach to understand the lived experiences of families to an
IWA. Considering the environment before, during and after the ASD diagnosis process, the study explored how the dynamics may have
been impacted. The current research was conducted during the COVID-19 pandemic and the added intricacies of lockdown upon the
family dynamics were also reviewed.
Consequently, the aims of the current research were:

1 To explore how family dynamics are impacted by a diagnosis of an ASD.

2 To explore the perception of the dynamic by understanding differential experiences from parents and neurotypical siblings to those
with an ASD.
3 To explore how the COVID-19 pandemic influences family dynamics in respect to an ASD.

2. Method

2.1. Ethics

The current study was granted ethical approval in April 2020 by the Department of Psychology’s Departmental Ethics Committee at
the University of York. Written consent to be interviewed and recorded was given by the participants and further oral consent was
confirmed at the beginning of the interviews. Throughout the recruitment and at the start of the interview, participants were reminded
about their right to withdraw.

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2.2. Methodological approach

This research aimed to capture an insight into the effects of an ASD diagnosis on families. Utilising semi-structured interviews, the
four researchers gained qualitative information from a parent and an adult sibling of an IWA. Interviewing parent-sibling dyads gained
information simultaneously, detaining the shared experiences and relationships of the family. Dyadic interviews obtain this infor­
mation more richly than with individual interviews (Morgan et al., 2013) as, in multiple individual interviews, the researchers would
have to disentangle meaning from two separate accounts (Burton, Shaw, & Gibson, 2015). Individuals may feel free to express their
views in a one-to-one interview yet, in joint interviews, such as dyads, participants can corroborate each other’s stories, challenge or
correct them, producing richer data (Taylor & de Vocht, 2011). Hence, dyad interviews were used in this research.
To ensure that important nuances were not missed, the interviews were transformed into anonymised transcripts and analysed
using Interpretative Phenomenological Analysis (IPA; Smith et al., 2009). IPA is becoming increasingly common with dyad research
(Smith et al., 2009), and has been used in previous ASD studies (Petalas et al., 2012; Tsai et al., 2018). This allows for a direct
interpretation of individual’s lived experiences as it is underpinned by phenomenology, hermeneutics, and ideography (Shaw, 2010).
As an inductive method, IPA allows participants to identify relevant experiences for interpretation, rather than relying on pre-existing
hypotheses (Smith et al., 2009). IPA is suitable for the current study: the participants’ lived experience with an IWA was the objective
(phenomenology), their identified shared experiences were interpreted (hermeneutics), and the nature of the semi-structured in­
terviews allowed the participants to discuss relevant and specific events (ideography).
Due to the COVID-19 pandemic, the parent-sibling dyad interviews were completed remotely using an auditory internet platform;
individuals completed the interviews from several locations using a unique meeting code. The questions remained open-ended and,
occasionally, the researcher prompted individual responses. As with other semi-structured interviews, the researcher probed areas of
interest in an attempt to enter ‘the psychological and social world of the respondent’ (Smith et al., 2009, p.58).

2.3. Recruitment

Participation invitations were emailed to 238 Autism support groups around the UK found on the NHS website (NHS, 2020). Out of
39 responses: 12 did not reply to a follow up email; 10 were not eligible as their neurotypical child was under 18 years of age; 6
declined from participation; 2 were not eligible as the IWA was an only child; 1 did not have any neurotypical children. Thus, 8 re­
spondents followed through with a dyad interview which equated to 16 individuals.

2.4. Participants

Inclusion criteria for participants of this study were: 1) participants must be either a parent or sibling of an individual formally
diagnosed with ASD; 2) dyad participants must be over the age of 18 years; 3) participants must be English speaking; 4) participants
must have access to a computer with internet connection and speakers; 5) both participants must be available at the same time.
Henceforth, exclusion criteria included: 1) participants were below the age of 18 years; 2) participants did not have a parent or sibling
eligible to complete the interview with them; 3) IWA had a suspected ASD rather than a formal diagnosis. Table 1 summarises the
demographics of the participants in this study.
Of the 8 interviews taken, there were 8 dyads consisting of 6 mothers, 2 fathers, 4 female siblings and 4 male siblings. The average
number of total family members was 4 with 2 dyads having 6 total family members. 5 parents were married and 3 were separated from
the IWA’s birth parent. In one dyad, there were 2 IWA which meant that, overall, 9 IWA were considered in this study. The mean age of
the IWA was 18.78 years with a range between 10 and 33 years of age. Out of the 9 IWA, 8 were male and 1 was female. 1 IWA had a
comorbidity with profound deafness, 1 had hypertonia, and 1 had learning difficulties. The eldest IWA received their diagnosis at 31
years of age; this sibling did not live with them during the diagnosis process.

Table 1
Participant Demographics.
Dyads Age (years) Gender Total family Diagnosis received Time since diagnosis Co-morbid
members (age in years) (years) conditions
Parent Sibling IWA Parent Sibling IWA

1 41− 50 18− 24 18 F F M 6 10 8 N/a

2 51+ 18− 24 22 M F M 4 8 14 Hypertonia
3 51+ 31− 40 33 M F M 4 31 2 N/a
4 51+ 18− 24 17 F F M 4 4 13 N/a
5 41− 50 18-24 22 F M F 4 14 9 N/a
6 41− 50 18− 24 18 F M M 4 14 4 N/a
7 51+ 18− 24 10, F M M, 6 6, 7 4, 6 Learning
13 M Difficulties
8 41− 50 18− 24 16 F M M 4 15 1.5 Profound
Deafness

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2.5. Interview procedure

The participants were electronically sent the information sheet, adult consent form and recording consent prior to the scheduling of
the interview, and they had sufficient opportunities to ask questions regarding the interview. The interviews were conducted remotely
through an auditory internet platform and were recorded using the application Audacity. After receiving written consent, the re­
searchers scheduled the meeting, electronically sending the unique meeting code to the participants. Before the recording started, the
researcher clarified the study, asked for further verbal consent, allowed time for questions, and the participants were reminded of their
right to withdraw. The interviews were completed on a voluntary basis and no rewards were given; participants were sent a debriefing
form following the interview.
The interviews aimed to gain a contextual understanding of the family dynamics before, during and after the diagnosis process of an
ASD and the mean interview time was 65 min and 19 s with a range from 50 min and 43 s to 1 h 16 min and 54 s. Participants were
asked about the family environment during these times, how the family communicates and supports each other, and how individuals’
look after themselves. As the research was conducted during COVID-19, the researchers were also interested in understanding how the
families responded to the pandemic and adjusted to the measures outlined by the UK Government. The questions were developed by
the whole research team however only one researcher conducted an interview at a time. Table 2 summarises a selection of questions
asked within the interviews. All four researchers and their supervisor had access to the password protected recording files before
transcription and these files were since deleted.
The questions were asked openly and, on most occasions, the individuals within the dyad decided the order of responses. Unlike
Tsai et al. (2018), there were no variation on the questions asked although occasionally, the researcher prompted individuals’ re­
sponses directly. Each individual did not have to answer every question, yet in most cases, both individuals relayed their own responses
and there was no participant ‘overshadowing’ between the dyads. As mentioned previously, one sibling did not live with the IWA
through the diagnosis process. Naturally, the parent gave greater detail when questioned about this period of time.

2.6. Data analysis/analysis procedure

The audio recordings of the interviews were turned into verbatim transcripts by the researchers using allocated pseudonyms in line
with the confidentiality and anonymity outlined in the ethics form. The transcripts were printed and analysed using the six stages to
IPA which included: 1) data immersion, 2) initial noting of themes, 3) development of emergent themes, 4) connect emergent themes
to develop super-ordinate themes, 5) repeat the first four stages for all transcripts, 6) identify patterns across transcripts (Smith et al.,
2009). A ‘reflective journal’ was used throughout the analysis to acknowledge previous biases and understanding. Previous prejudices
to the area may have led to research assumptions, and it was therefore important to acknowledge, separate and limit the effect that
these had upon the research outcomes. To measure validity, the researchers cross-validated one transcript, independently annotating
and developing emergent themes. There was an agreement of 80 % of the emerging themes, the researchers discussed similarities and
differences within their findings whilst being mindful of their prior expectancies.
The researcher familiarised themselves with the printed transcripts and engaged in a double hermeneutic: trying to make sense of
participants making sense of their own experiences. Initial notes including descriptive and linguistic comments, observations and
contradictions were annotated onto the transcripts before identifying emerging themes. Through abstraction, contextualisation and
polarisation, emerging themes were collated before identifying patterns across all transcripts to develop super-ordinate themes.

3. Results

Commonalities were observed across all interviews which lead to the identification of nine sub-ordinate themes. These themes were
grouped under three super-ordinate themes: 1) Dominated by ASD; 2) Family cohesion; and 3) The need for support. Table 3 sum­
marises the allocation of sub-ordinate themes to super-ordinate themes, with supporting quotations. The themes will be discussed
using illustrative quotes to present the ‘essence’ of their impact upon the dyad participants.

Table 2
A Sample of the Interview Questions Presented to Participants.
Demographic questions IPA questions

Which age bracket do you fit into: 18− 24; 25− 30; 31− 40; 41− 50; 51+ How would you describe your relationship with the IWA?
How old is the IWA? Describe the family environment before receiving the diagnosis
At what age did the IWA receive their diagnosis? Describe the family environment during the diagnosis process
How many family members are there in your immediate family? Describe the family environment after receiving the diagnosis
Has the diagnosis affected any future plans?
Has the COVID-19 pandemic affected your ability to support the IWA?
How have you managed to maintain structure or normality during lockdown?
Has your location of residency impacted your ability to receive services?
What has the IWA taught you or helped you become?

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Table 3
Summary of Super- and Sub-ordinate Themes.
Super-ordinate Sub-ordinate themes Supporting quotations
themes

3.1.1 Parent’s sacrifice ‘I was really noticing that we couldn’t spend as much time with him [referring to sibling]’ Parent 5, Line 711
‘I just hope that I’m around for a long time to be there for what they need to get them established’ Parent 7, Lines
3.1 Dominated by 3.1.2 Longevity of support
908–909
ASD
3.1.3 Increased sibling ‘I take it upon myself to try and calm the situation down sometimes by distracting so I did feel a little bit of
responsibility responsibility’ Sibling 4, Lines 319–321
‘not sort of really understanding why IWA was like this but sort of knowing that there was something different
3.2.1 Increased knowledge of
about it and you just need to act differently to him than how I would act towards[another sibling]’ Sibling 1,
ASD
Lines 283–285
3.2 Family
3.2.2 Family closeness due to
Cohesion ‘I think that[S]and[IWA]are a lot closer now’ Parent 8, Line 285
COVID-19
3.2.3 Seeing IWA as an
‘I wouldn’t say she[IWA]was treated any differently in the family’ Sibling 5, Line 370
individual
‘he was the only child that needed extra help that worked to our advantage we got all the help he needs’ Parent 7,
3.3.1 Adequate support
Lines 1706–1707
3.3 The need for
3.3.2 Inadequate support ‘there is so little available support for him [IWA]’ Parent 1, Line 675
support
3.3.3 The impact of COVID-
‘[we are] limited in that we can’t go out and get a break from it’ Parent 6, Lines 785–786
19

3.1. Dominated by ASD

The first theme captures the essence that the dyads lives were, to an extent, controlled by ASD. Dyads described the need to be
aware of and to plan around the IWA, planning for the near and long-term future. There was discussion about how their physical,
emotional and financial resources were impacted by the IWA, yet they were driven to give the IWA the best opportunities. In some
instances, this included a ‘double standard’ of parenting between the IWA and the sibling, ‘fighting’ to gain academic support for the
IWA and ensuring their safety long-term. The siblings expressed an awareness of their increased responsibility in comparison to having
a neurotypical sibling, recognising potential future responsibilities.
‘…I read something the other day about having a disabled child… that it disables the family as well it becomes your secondary disability
and and that really rang true with me’
(Parent 8, Lines 621–625)

3.1.1. Parent’s sacrifice

There was a sense that parents gave up their time and energy to facilitate services and opportunities for the IWA. 37.5 % of siblings
and 75 % of parents discussed this sub-theme. Parents described having to ‘fight’ with professionals with negative connotations. It was
acknowledged that this additional time and energy was at the expense of time with their neurotypical child(ren) and their career
progression.
‘…then we got the diagnosis of Autism and then he didn’t go to school and then we needed a lot of support for GCSE’s and then it was like
okay so that’s massively affected my plans for having some sort of world of work’
(Parent 6, Lines 659–661)
Some parents were aware that in encouraging a harmonious home environment, not only did the neurotypical child(ren) receive
less of the parents’ time but also there may have been a ‘double standard’ in the parenting practices between children.
‘…I think that that for the other three, there seemed like there were two sets of rules’
(Parent 1, Lines 312)

3.1.2. Longevity of support

It was apparent that the demands of living with an IWA were near-constant; dyads were concerned about the IWA’s behaviour and
characteristics within and external to the family environment. 87.5 % of siblings and 100 % of parents expressed concerns presently
and for the IWA’s future. Parents acknowledged an awareness of the IWA’s future, understanding that the IWA may never live
independently and three parents directly gave reference to their Wills. Siblings were concerned about the well-being of the IWA,
emphasising worries for the IWA’s social and occupational opportunities.
‘…we have been talking about ah erm the separation… and erm and of Wills setting up our Wills… and and we’ve been talking about if I if
I pop me clogs clogs at some point in the near future what happens to [IWA]’
(Parent 2, Lines 498–502)

3.1.3. Increased sibling responsibility

This component was focused around the sibling’s additional roles within the family. 87.5 % of siblings and 50 % of parents dis­
cussed the siblings’ current increased responsibilities; it was noted that these responsibilities emerged over time as the sibling gained

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understanding of the IWA. These additional roles included assisting with the IWA’s routine, giving emotional guidance in life and a
presumption of future responsibility. Siblings discussed helping with the IWA in a positive manner, acknowledging that it was ‘part of
the package’.
‘That is restricting me but it’s part of the package but I couldn’t just move over to Australia New Zealand and live there for the rest of my
life there and because when my parents get old… when you guys end up in a care home or whatever who is going to be there for [IWA] so
I’m thinking I can’t put all my eggs in one basket I’ve always got to keep some sort of hand round here’
(Sibling 5, Lines 672–679)
Not all siblings believed that they had additional roles or authority within the family. However, as picked up by the parents, there
was an essence that they provided emotional support to the IWA.
‘Parent: …[IWA1]particularly if somethings upset him sometimes he will speak to them [his siblings] about it
Researcher: Yeah
Parent: Erm and then they will come to me and say "this is what[IWA1]spoke” [pause]
Sibling: Yeah totally
Parent: And I’d like them to have that cause sometimes there just are things you don’t wanna talk to your mum about do ya
Sibling: Naaah
Parent: You wanna talk to about to someone you look up to and someone who’s your role model like your brothers’
(Dyad 7, Lines 1971–1986)
There was an ethos of gratefulness by the parents as, in most cases, the siblings independently stepped into the roles. However,
parents were conscious that the IWA was not the sibling’s responsibility and did not want to restrict the sibling’s opportunities by
caring for the IWA later in life.
‘…I don’t know how long I’ll a be here to for to care for them [IWA] but I don’t expect their older brothers to care for them because
they’re not their responsibility’
(Parent 7, Lines 942–943)

3.2. Family cohesion

From the words and nuances between dyads, there was an insight into the closeness of the families despite their adversities and
challenges. Dyads recognised that the diagnosis brought the family together, that they had a platform to understand the IWA’s be­
haviours, and they could share this information with others. There was also a strong emphasis of an adoration towards the IWA, that
the IWA was a valued member of the family, and that they didn’t change after receiving the diagnosis. Further, dyads acknowledged the
additional time spent with each other as a result of the COVID-19 pandemic was beneficial to the closeness of the family.
‘…the only way we can cooperate with [IWA] is is to embrace the moments when he is able to give himself not to regret the ones where he
isn’t’
(Parent 1, Lines 1034–1035)

3.2.1. Increased knowledge of ASD

There was an indication that the diagnosis was beneficial in bringing the families together with 87.5 % of siblings and 100 % of
parents describing an increased understanding of the IWA and ASD. Although many parents still had difficult times, the diagnosis gave
an overall feeling of relief which decreased stress within the home environment. Parents made allowances for the IWA, and the families
felt closer. Dyads believed that the diagnosis helped the IWA have more understanding of themselves; one parent admitted that the
IWA was unaware of their diagnosis.
‘…there was just that feeling of relief… and now you know I just understand more about how he thinks and he understands how how he
thinks and that is just wonderful’
(Parent 3, Lines 238–242)
Interestingly, more than one dyad expressed that even post-diagnosis, they had to convince some family members of the diagnosis
and emphasise the benefits that it would have for the IWA. It was indicated that time helped the families accept the diagnosis and the
increased knowledge, awareness and experience brought the family closer together.
‘…other members of the family so my sisters erm and my mum a bit and members of[IWA’s]dad’s family didn’t think that[IWA]had an
Autism Spectrum Disorder’
(Parent 4, Lines 186–187)

3.2.2. Family closeness due to COVID-19

As with many families, the COVID-19 pandemic gave families more time to spend together. Albeit with its challenges, 75 % of
siblings and 87.5 % of parents discussed this additional time with positive connotations and a belief that their family had become
closer. Some dyads were surprised about the IWA’s involvement within the family and thankful for the pandemic giving them this
opportunity.
‘Parent: …the family decided to do a lip sync recreation with each part of the family doing some part of

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Sibling: Dancing Queen

Parent: Dancing Queen and and I didn’t think [IWA] would really do it
Sibling: [IWA] doesn’t get on with
Parent: Because he doesn’t get on with his Grandmother he doesn’t like doing things for her… there was no “What’s in it for me?” and it
involved getting dressed up in silly costumes and you know lip syncing and dancing and I I didn’t think he’d do it I I jumped I thought
don’t don’t worry if he doesn’t it’s better that there was no point trying to force him because it would have been an upsetting experience
and actually he did it and it took him a while to get into it but once he did yesterday afternoon he thoroughly enjoyed himself and it was
lovely to see erm you know him just messing around with the others’
(Dyad 1, Lines 1020–1031)

3.2.3. Seeing IWA as an individual

There was an overarching sense of love and adoration towards the IWA; separating them from their diagnosis, seeing them as an
individual, and a valued member of the family. 75 % of siblings and 100 % of parents discussed this sub-theme. One sibling emphasised
that the diagnosis was helpful for giving clarity to those outside of the family. Both parents and siblings discussed the positive skills that
they had developed because of the IWA and were proud to have the IWA as a close member of the family.
‘I I absolutely adore him and I think erm he has absolutely taught me to be unconditional with my love towards everyone’
(Sibling 1, Lines 1171–1172)
‘…the diagnosis is is just a label to for for other people to just take the benefit of’
(Sibling 5, Lines 238–239)

3.3. The need for support

There was a strong sense of the need for support as all dyads, to varying degrees, expressed their experiences with support. Both
positive and negative connotations of the support were expressed including acknowledgement of how the COVID-19 pandemic had
affected support. The overall level of support was largely noted by the parents, perhaps due to their increased role in communicating
with professionals. On multiple occasions, parents apologised for their passion towards this subject; one parent became emotional
when discussing support. Sibling’s emphasised a need for social support, giving reference to personal experiences.
‘…I thought oo at the time quite naively I’m going to get lots of support which didn’t actually [laughs] happen’
(Parent 4, Lines 237–238)

3.3.1. Adequate support

Positive connotations were given to received support with parents acknowledging that additional academic support was ‘worth the
fight’. 75 % of siblings and 100 % of parents discussed this sub-theme and dyads were not only grateful for the support given to the IWA
but for support for the family. Siblings conveyed support including discussing ASD with their parents and expressed a value in social
support from friends and others. Only one dyad discussed receiving direct support from services regarding ASD and reiterated that
more siblings should be given the same opportunity. Where parents received support, they placed value into social support from
extended family members and within external social activities.
‘…one of the girls that I live withher elder sister is also on the Autistic Spectrum… so erm, we sort of talk it all out… and talk about our
experiences and I think what tends to come out of those is the overwhelming hilarity and joy’
(Sibling 1, Lines 569–576)
‘…Barnardo’s started a sort of sibling group… and that was erm to join up with the brothers and sisters etcetera of people who have
brothers and sisters who are Autistic… it was a really good sort of release and a a good way to positively talk about it it’s not that you shy
away from saying it’
(Sibling 5, Lines 444–455)

3.3.2. Inadequate support

It was made clear that there was an inadequate level of support available. Parents had a greater depth of response when discussing
services, with 87.5 % of parents describing inadequate support in comparison to 12.5 % of siblings; presumably because they had more
input into the practicalities of gaining support. There was a suggestion of negative connotations towards communicating with pro­
fessionals both from the academic and clinical fields as many experienced having to wait a long time for the formal diagnosis. Three
parents admitted being told that their child did not have ASD prior to the official diagnosis, expressing frustration towards the ASD
services and towards a lack of funding for support for the families. Parents acknowledged that the support they received would not be
available for parents in their position today. Further, parents expressed a frustration towards a lack of recognition of the need for
support for the family as a whole.
‘…I’ve pushed for erm an ASD advisor to speak to [IWA] on a weekly basis online but I’ve had to do that’s never school it’s never the
service it is always me’
(Parent 8, Lines 640–641)

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3.3.3. The impact of COVID-19

Regardless of support prior to the COVID-19 pandemic, it was clear that the lockdown had impacted the family’s ability to gain
support from external individuals and services, as well as their ability to support the IWA and the family. As with most individuals, the
pandemic limited opportunities for the IWA to gain academic and social support which influenced the family’s support systems. 25 %
of siblings and 100 % of parents discussed this sub-theme. Many of the parents worked from home which added an extra layer of
difficulty, the work-life balance and lack of break from the IWA was mentally taxing, even in cases where the IWA was enjoying the
lockdown.
‘… I’ve got half my mind on work half my mind on trying to sort[IWA]out… I just I’ve felt like I’ve been spinning a lot of plates during
COVID… it doesn’t feel like anybody acknowledges what you just take on board you just do it as a family it’s just like right my shoulders
have to be bigger for this period let’s work out how we get through this’
(Parent 5, Lines 886–895)
The IWA’s understanding of the virus was varied, which affected the family’s ability to support them. In some cases, the IWA felt
fearful of the virus; staying at home made them feel safe. These families described a better level of structure for the IWA. Alternatively,
the IWA had a lack of understanding of the severity of the virus, feeling out of routine and angered towards others.
‘…it’s worked its actually worked better for them being in lockdown when they’re out in the world they have to deal with so many
different anomalies that can come up’
(Parent 7, Lines 1354–1356)
‘…he refused to do all the things the Government requires us to do’
(Parent 1, Lines 937)

4. Discussion

4.1. Summary of findings

This qualitative study explored the lived experiences of parents and siblings with aims to 1) explore how family dynamics are
impacted by a diagnosis of an ASD; 2) to explore the perception of the dynamic by understanding differential experiences from parents
and neurotypical siblings to those with an ASD; and 3) to explore how the COVID-19 pandemic influences family dynamics in respect to
an ASD. Three themes were developed from the interviews: dominated by ASD; family cohesion; and the need for support (see Table 3).
Some themes were related to Tsai et al. (2018), for example, Tsai et al.’s themes discussed the support needed for the families and they
emphasised that the families shared responsibility over the IWA which included sibling responsibilities. Thus, suggesting the current
study had similarities in experiences to the findings of Tsai et al. (2018)’s cross-cultural study.

4.2. The impact of ASD on family dynamics

Comparable to Cebula (2012), there was an overarching belief that the diagnosis directly or indirectly affected all family members.
The parents discussed the impact of the diagnosis more fully than the siblings as, in most cases, the siblings were too young to
remember the IWA receiving the diagnosis. Research suggests that parents have emotional, relational and informational needs when
adjusting to an ASD diagnosis; time, and knowledge around the condition was a factor in parent’s acceptance of ASD (Evans, 2010;
Legg & Tickle, 2019). This supports the current findings. The dyads expressed that an increased knowledge of ASD (theme 3.2.1) was
beneficial in understanding the IWA, in adjusting to the diagnosis, and in bringing the families together (family cohesion; theme 3.2).
Further, time was helpful for processing the diagnosis both for the immediate and wider family suggesting that family dynamics were
positively impacted by the diagnosis.
Marsack-Topolewski and Graves (2020) emphasised the challenges for families including future planning if a parent was to pass
away. They identified themes of the fear of the unknown, the need to secure plans ahead of time, and the barriers to planning. This
reflects the current findings (longevity of support; theme 3.1.2). Both members of the dyads expressed concerns for the IWA’s future,
multiple parents directly discussed their Wills. This highlighting that ASD is a life-long condition requiring a variety of family resources
(Cridland et al., 2014). However, Hartley et al. (2011) described the longevity of support as a ‘burden’ which contradicts the findings of
this study. There was an essence of worry for the IWA’s future by the dyads and that they would do all they could to support the IWA.
This perhaps emphasising that the IWA is more than their formal diagnosis (theme 3.2.3) and that they are a valued member of the
family, rather than a ‘burden’.
Further, there was strong sense of need for support (theme 3.3) and the reality of support available (themes 3.3.1 and 3.3.2). Dyads
discussed the positives of social support for the family and the benefits of talking through situations. Cebula (2012) indicated that
social support for siblings was ‘of clear importance’ (p. 859), that it was associated with adjustment, and that it came from close
friends, classmates, parents and teachers. They described social support as being linked to sibling self-concept, giving light to the
‘within sibling’ factors of The Sibling Embedded Systems Framework (Kovshoff et al., 2017). Similarly, Tsai et al. (2018) found that
mothers from the UK appreciated the support they received from friends, specifically in relation to emotional support. Together,
previous literature reinforces that support impacts the family dynamics.
However, parents expressed frustrations towards ASD services, specifically in the communication they had received, in the lack of
funding for support and in the lack of recognition for the whole family (inadequate support; theme 3.3.2). Multiple dyads expressed a
disappointment as professionals had previously advised against an ASD diagnosis and they felt that the process was too lengthy. In

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support, it takes on average in the UK, 3.5 years to obtain a formal diagnosis of an ASD and parents stated an unsatisfactory level of
support post-diagnosis, giving associations to parental stress (Crane et al., 2016). Therefore, indicating a call for this research to inform
clinical practice.

4.3. Differential experiences in the perception of family dynamics

Despite the potential to face conflict around their child’s rights to specialist provisions, it has been acknowledged that parents have
an increased level of involvement in arrangements for the IWA (Harris & Davidge, 2019) and in some cases, parents are at the default
position for co-ordinating school transitions (Mitchell & Beresford, 2014). This rang true in the current study. Parents discussed
advocating for the support for the IWA at the expense of their time with their neurotypical child(ren), the co-parent and their careers;
they found this mentally taxing but, in most cases, worthwhile (parents sacrifice; theme 3.1.1). Previous non-western literature
suggested that the nature of caring for an IWA may lead to an unintentional variation in parenting between the IWA and the neu­
rotypical child(ren) (Chan & Goh, 2014; Tsai et al., 2018), supporting the current findings and highlighting a potential universal
experience for ASD families.
Siblings described an increased responsibility in the family (theme 3.1.3), with some acknowledging that this may develop in the
future. Parentification is a term describing caregiving roles by siblings during childhood or if siblings become the main caregiver
during adulthood (Nuttall et al., 2018); there is a higher prevalence of parentification within families with disabilities (Hannah &
Midlarsky, 2005). Nuttall et al. (2018) suggested siblings to an IWA had a lower intention to provide future care compared to siblings of
those with Down syndrome. Yet the current siblings described an awareness and intention to give care to the IWA in the future without
the negative connotations, suggesting that siblings are attuned with their future plans. However, these findings cannot be directly
compared to Nuttall et al. (2018) as the current study did not have a comparator group.
Nevertheless, there was a sense of family closeness; dyads expressed adoration towards the IWA. ASD literature suggests that
siblings have a sense of protectiveness and appreciation towards the IWA, describing positive experiences and a closeness within the
family (Leedham et al., 2020; Petalas et al., 2012). Despite acknowledgement that an ASD may limit family opportunities, UK families
enjoyed spending time together without defining the IWA as ‘Autism’ (Tsai et al., 2018), supporting the current themes (family
cohesion and seeing the IWA as an individual; themes 3.2 and 3.2.3 respectively).

4.4. The influence of COVID-19 on family dynamics

COVID-19 influenced the families to varying degrees with all dyads discussing their experiences during the first UK lockdown. They
demonstrated the pressures of the pandemic including being consumed by working and living in the same environment as the IWA,
being frustrated by the lack of support or recognition from others, and the complexities of educating the IWA about the virus (impact of
COVID-19; theme 3.3.3). This supports previous finding suggesting that IWA had difficulties comprehending the virus (Mutluer et al.,
2020), and that uncertain changes to the environment may lead IWA to have unique responses to the pandemic (Bellomo et al., 2020).
That being said, the dyads expressed positive outcomes of the lockdown including an increase of time with the family, the ability to
maintain a beneficial routine, and an increase in safety within the home environment (family closeness due to COVID-19; theme 3.2.2).
Despite a lack of research or understanding of how the pandemic has shaped ASD families, there has been an attempt to
conceptualise the risk and resilience of all families during COVID-19 (Prime et al., 2020). Referencing the family stress model and the
espoused model, it was suggested that the effects of COVID-19 will be longstanding, giving a high level of stress to caregivers, straining
their emotional resources and posing challenges in maintaining an effective family environment. They described that families with
special needs may have vulnerabilities, noting that differential treatment from parents during the pandemic may pose a risk to sibling
relationships. Inversely, there was an indication that some may thrive, suggesting resilience in the face of adversity. This felt apparent
within the current study as dyads gave mixed responses in discussion of the pandemic and how it had influenced their family dynamics
(themes 3.2.2 and 3.3.3).

4.5. Implications

This study suggested that a diagnosis of an ASD affects all members of the family. Coupling the first and third themes (dominated by
ASD and the need for support), there is a clear sign that parents and siblings sacrifice their resources presently and in the future, and
they require support throughout this. Although there are courses available for parents including Cygnet (Barnardo’s, 2020) and Riding
the Rapids (Stuttard et al., 2014), the spaces for these are limited or costly, and the allocation of funding is undeniable (NAS, 2019). One
parent acknowledged that some services were no longer available, others expressed a lack of awareness of courses or were told by
professionals that there was no support (see theme 3.3.2). Parents who had received support for themselves and/or the IWA suggested
a sense of appreciation and gratefulness; this should continue and be offered to all parents of an IWA.
Further, sibling relationships impact individual adjustment throughout a lifespan and these relationships are bi-directional
(McHale et al., 2016). The current siblings placed an emphasis on the usefulness of support including social support yet only one
sibling expressed accessing support services directly focusing around ASD; it was explained that this service had since lost its funding.
The significance of recognition and support for siblings should not be undervalued, calling for more services to offer sibling focused
support.

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4.6. Limitations and future research

Inevitably, this study had its limitations. Although use of joint interviews allowed opportunities for the dyads to corroborate or
challenge ideas presented within the interviews (Taylor & de Vocht, 2011), the researchers did not specifically evidence the extent to
which participants either agreed or disagreed with each other across the 9 themes. This may present a bias not accounted for in the
results. Qualitative approaches such as IPA may further introduce bias as the researcher’s previous understandings and prejudices can
influence the analysis (Brocki & Wearden, 2006). In attempt to minimise researcher bias and to acknowledge personal biases: the
researcher developed a ‘reflective journal’, cross-validated a transcript with one other researcher, and effectively used academic su­
pervision. There may have been an element of volunteer bias as participation was completely voluntary. Parents may have had their
own motivations to completing the interviews, yet this a difficult factor to overcome with sensitive research such as the current study
(Tsai et al., 2018). Further, there was an unbalanced ratio of female to male parent participants (3:1); the mixed nature of sampling
may have increased variance between the interviews. However, the interviews with male parents opened an insight into father’s
experience, a gap found in Tsai et al. (2018)’s study.
Albeit no participant ‘overshadowing’, many of the siblings were young when the IWA was going through the diagnosis process and
there was a lack of contribution from the siblings when discussing this process. As the study aimed to explore the dynamics through
differential experiences, it would have been beneficial to understand the sibling’s perspective surrounding the diagnosis procedure. To
clarify this, future research could consider longitudinal methods to understand the impact of an ASD on sibling dynamics.
Moreover, it did not form part of the exclusion criteria, yet some IWA in this study had co-morbidities including deafness and
hypertonia. ASD is a highly co-morbid disorder (Salazar et al., 2015), yet these added complexities to the ASD may influence family
dynamics; multiple IWA with different co-morbidities may potentially alter research findings. Future research could consider either the
impact of purely ASD upon family dynamics or focus specifically on how certain co-morbidities impact the family system.
Ultimately, the timing of the research may have affected the outcomes. The families were navigating the practicalities of the
COVID-19 pandemic which would have added an extra layer to the family dynamics. Although the first UK lockdown brought a
uniqueness to the current study, this unprecedented extraneous variable may have altered participants responses and the findings may
have a reduced generalisability to other ASD family dynamic research.
The sub-ordinate theme of ‘Family closeness due to COVID-19’ (3.2.2) may have been influenced by the participant’s occupations.
Parents and siblings who were considered key workers during the pandemic such as health care workers may not have had the same
level of time with their family during lockdown. This may have affected their families ‘closeness’ and overall family cohesion. In
accordance with its small sample size (16 individuals), this study may therefore lack population validity and the findings may not
conclude how all ASD families coped with the first UK lockdown.

4.7. Conclusions

This study aimed to contribute to the literature on the lived experiences of parents and siblings to an IWA. Exploring dyads, the
researchers gained an understanding of the family dynamics before, during and after the ASD diagnosis, and throughout COVID-19.
The findings suggested that both members of the dyad were, to an extent, dominated by ASD with reference to future responsibilities.
There was an essence of family cohesion yet there was a strong indication of the need for support. Despite its limitations, this study
serves as a platform to future research including the impact of co-morbidities on family dynamics and the need for longitudinal
approaches.

Funding

This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors.

CRediT authorship contribution statement

Emma Critchley: Software, Formal analysis, Investigation, Data curation, Writing - original draft, Visualization, Project admin­
istration. Michelle Cuadros: Software, Formal analysis, Investigation. Ina Harper: Software, Formal analysis, Investigation. Harry
Smith-Howell: Software, Formal analysis, Investigation. Miles Rogish: Conceptualization, Methodology, Writing - review & editing,
Supervision.

Declarations of Competing Interest

None

Acknowledgements

We would like to thank Dr. Miles Rogish for inspiring and supervising this research. We would also like to thank the relevant UK
Autism support groups found on the NHS website for connecting us with the participating parents and siblings. To these individuals,
thank you for your honest responses to our questions and the powerful insights given into the workings of your families.

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