The Experiences of Fathers Who Have Offspring with Autism Spectrum Disorder
The Experiences of Fathers Who Have Offspring with Autism Spectrum Disorder
Alexander Burrell 0 1 2
Jonathan Ives 0 1 2
Gemma Unwin 0 1 2
0 School of Psychology, University of Birmingham , Birmingham , UK
1 School of Social and Community Medicine, University of Bristol , Room G.4a, Canynge Hall, 39 Whatley Road, Bristol BS8 2PS , UK
2 College of Medical and Dental Sciences, University of Birmingham , Birmingham , UK
Research exploring parents' experiences of having offspring with autism spectrum disorder (ASD) currently underrepresents fathers. This study aimed to develop an understanding of the experience of fathers, with a view to facilitating improved support. Eight fathers participated in semi-structured interviews exploring their experiences of fathering children with ASD. Fathers described their experiences as a path towards acceptance, with independence and integration for their offspring being key goals. Fathers saw themselves as advocates fighting obstructive services to access appropriate care. The value placed on formal and informal support varied, although the need for personalised support was emphasised. Enabling fathers to see their experiences as a journey, whilst engaging them on the important topics of independence and integration, may improve their experience.
Autism spectrum disorder; Qualitative; Fathers; Experiences; Acceptance
Autism spectrum disorder (ASD) is a lifelong
developmental disorder typically presenting in early childhood,
characterised by impairments in social interaction and
communication, and restricted, stereotypic patterns of behaviour
(American Psychiatric Association 2013; World Health
Organization 2004). Over recent decades, prevalence of
ASD has increased globally including in Europe, the United
States, China and Japan (Barnevik-Olsson et al. 2008;
Honda et al. 2005; Kaye et al. 2001; Nevison 2014; Wong
and Hui 2008). It is now estimated to affect 1% of the
population in England (Brugha et al. 2011), whilst recent data
from the United States Autism and Developmental
Disabilities Monitoring Network observes a prevalence of 14.6
per 1000 in children aged 8 across their surveillance sites
(Christensen et al. 2016). This change may relate to
broadening of diagnostic criteria and increased social awareness
of the disorder (Sadock et al. 2003). Regardless of the
reason, increasing numbers of families are caring for offspring
diagnosed with ASD, and may require support in doing so.
Parents’ experiences of diagnosis of ASD are known
to be characterised by: feelings of grief and loss; fears
concerning the long term impact of the diagnosis; a
sense of loss for the life events their child would never
experience; and, for some, the reaction is comparable to
a death in the family (DeGrace 2004; Gray 2003; Hock
et al. 2012). Caring for someone with ASD presents
significant challenges: individuals with ASD may become
distressed when routines are disturbed (DeGrace 2004),
and have difficulties expressing their needs (Peppe et al.
2007). Medical comorbidities are also common,
including a higher prevalence of epilepsy and sleep disorders
when compared to the general population (Bauman 2010;
Jokiranta et al. 2014). Furthermore, with the majority
of adults with ASD remaining dependent on their
families (Howlin et al. 2013, 2004), the role of a parent as a
carer pervades throughout life. Both mothers and fathers
of children with ASD show higher levels of parenting
stress and psychological distress than parents of typically
developing children (Baker-Ericzén et al. 2005; Davis
and Carter 2008; Hastings et al. 2005), as well as a higher
prevalence of both depression and anxiety (Almansour
et al. 2013; Benjak et al. 2009; Kuusikko-Gauffin et al.
2013; Singer and Floyd 2006). These elevated levels of
stress, and feelings of parental incompetence, can
significantly reduce affective parental attachment to children
with ASD, for both mothers and fathers (Goodman and
Glenwick 2012). Children with ASD show markedly less
secure attachment to their parents when compared to
typically developing children (Rutgers et al. 2004), and
parents’ subjective perceptions of their children’s attachment
to them can contribute significantly to parental stress
levels (Goodman and Glenwick 2012). The UK National
Institute for Health and Care Excellence guidance on the
management of ASD acknowledges these difficulties and
their pervasion through parental experience, stating that
parents of offspring with ASD should be offered regular
personal, social and emotional support (National
Institute for Health and Care Excellence 2013). As parents
face the challenges of caring for children with ASD, an
important emotional mediator is psychological
acceptance. This process involves developing an awareness of,
and embracing, difficult events without unnecessary and
potentially distressing attempts to change their frequency
or content (Hayes et al. 2006). Given the enduring nature
of behavioural problems in people with ASD,
traditional short term coping mechanisms, for example either
avoidant or problem-focused strategies, may be
unhelpful and indeed harmful over time for parents (Hastings
et al. 2005). When comparing parental empowerment, a
problem-focused coping method, to acceptance, Weiss
et al. (2012) found that only psychological acceptance
mediated the effects of child behavioural difficulties on
parental mental health problems. Similarly, acceptance
of ASD, and the creation of a ‘new normal’ within the
family, has been reported qualitatively (DeGrace 2004;
Luong et al. 2009). Quantitatively, increased
acceptance of ASD has been found to mediate the relationship
between challenging behaviour and parental wellbeing,
reducing psychological distress (Jones et al. 2014).
A recent qualitative review exploring parents’
experiences of caring for a child with ASD developed a
temporal model of parents’ experiences moving from the
prediagnosis period to looking ahead to the future, drawing
on the family life cycle model proposed by (Carter and
McGoldrick 1988). The review found that parents face
challenges including: feeling overwhelmed; developing a
negative self-perception as a carer; feelings of guilt and
blame; and receiving criticism in public (DePape and
Lindsay 2015). This review identified six broad themes,
Prediagnosis Associated with parent expectations of
typical development, noticing atypical development, and
searching for answers to explain what is perceived as
atypical development. The stage of searching for answers is
often a “prolonged and confusing process in which some
parents received an incorrect diagnosis for their child”
Diagnosis Associated with “relief and devastation”, and
“guilt and blame” (p10).
Family life adjustment Associated with, inter alia,
managing challenging behaviour at home and in public; feeling
judged by others; impact on family finances; feeling
overwhelmed, stressed and exhausted; changes to spousal
relationships (positive and negative); and impacts on
relationships with other children.
Navigating the system Associated with attempts to
access the best care and support they can, including
challenges dealing with school systems and community
Parental empowerment Associated with attempts to take
control through self-educating and developing coping
strategies. The sub-theme ‘super-parents’ was developed, here,
to describe the parent who, unsatisfied with service
provision, becomes an expert and advocate for their child.
Moving forward Associated with accepting the
diagnosis and looking towards the future. Parents may accept ‘the
new normal’, and begin to identify the benefits of caring for
an ASD child. ‘Looking towards the future’ involves
parents seeking to prepare their ASD children for
independence (i.e. living on their own or employment).
DePape and Lindsay note that not all the themes arose
in all the 31 papers included in the review, and that more
research is needed to confirm patterns of experience. They
also note that in the included studies the maternal
demographic is over-represented, with mothers constituting
almost three quarters of respondents. They suggest this may
be due to the desire of some studies to examine only the
experiences of primary carers and, despite fathers
increasingly adopting this role (Ellison et al. 2009), mothers do
remain more likely to be primary carers. The impact of the
father, even as secondary carer, is highlighted by some of
the studies included in De-Pape & Lindsay’s (2015) review.
Some studies report spouses growing closer as a result of
jointly caring for their child (Aylaz et al. 2012; Hock et al.
2012; Markoulakis et al. 2012), whilst others reported
gendered tension arising from mothers’ perception of not
receiving enough spousal support (Gray 2003; Luong et al.
2009). For example, one mother participant in a 2003 study
“Nine times out of ten it’s the mother who is [caring
for the child]…because the father is working.…The
father essentially has…respite care five days a week”
(Gray 2003, p. 635).
A father in the same study told of his using work to
avoid having to deal with a difficult situation at home:
“I was not working forty hours. Paid for forty hours a
week, but I worked an average of sixty-five.…I think
I did it to get away from [my daughter]” (Gray 2003,
This is reminiscent of the findings of Genesoni and
Tallandini, (2009) who, speaking in the context of the
challenges fathers face in trying to reconcile their personal and
work lives, noted that fathers will:
“frequently withdraw from this conflicting
situation into their traditional role and do not attempt to
change their habits; therefore they end up providing
little support to their new families in terms of
practical help.” (p316)
Even as ‘secondary carers’, then, fathers are still an
integral and important part of a parenting dyad, whose
experiences, actions and choices are both important in their own
right and impactful on a range of other important outcomes.
A further limitation to existing research is that the fathers
involved tend to be interviewed alongside mothers as a
combined ‘parent’ experience (Altiere and von Kluge 2009;
Farrugia 2009; Ludlow et al. 2012; Ryan and Salisbury
2012; Woodgate et al. 2008). Couple interviews, whilst
useful in their own right, cannot always capture individual
perspectives and needs, and do not always present
individuals with the opportunity to raise matters that are of concern
to only them and which they might not have shared with
their partner. As such, a couple interview may only capture
a negotiated or public front, rather than the personal
perspective. Recent studies of fathers and fatherhood suggests
that the experiences of fatherhood and motherhood can be
fundamentally different, which might be explained by
gendered embodiment and social and moral norms attached to
gendered parenting (Doucet 2009; Ives 2014). This
suggests that what we know about mothers in this context
cannot uncritically be assumed to apply to fathers. Further, a
recent study by Ives (2014) suggests that some fathers,
cognisant of moral discourse around parenting, might not see
their own worries and concerns as sufficiently important or
legitimate to raise. It is therefore important that fathers are
engaged with as fathers, and not just as one-half of a
parenting dyad, so that their own, and possibly different,
concerns and support needs can be considered.
With most of the current understanding of ASD parents’
experience coming from mothers, further exploration of
fathers’ experience is needed and could improve the
support offered to families by increasing awareness of
fatherspecific issues amongst health and social care
professionals. This study therefore aimed to explore the experience of
being a father of someone with ASD in order to enable
service providers to better understand the father perspective.
Interpretive phenomenological analysis was used to
investigate phenomena through the first-hand experience of
participants—in this case the experience of being a father of
someone with ASD. This approach explores the meaning
people give to their lived experiences through an in-depth
examination of a series of cases (Holloway 2005; van
Sampling and Recruitment
Purposive sampling was used to ensure participants had
experience of the phenomenon in question. A sample size
of eight to twelve participants was aimed for to ensure a
sufficient quantity of data to adequately explore fathers’
experiences. Inclusion criteria were: self-identifies as male;
self-identifies as a father of offspring (adult or child) with
ASD; capacity to consent to participate. The only
exclusion criteria was insufficient levels of English to complete
an interview. No potential participants were excluded.
Participants were recruited through two ASD support
charities based in Birmingham and London, one using an online
advert on their website and another sending a standardised
recruitment email to their mailing list. After seeing
recruitment material, interested individuals could contact the
researcher and were then sent an information sheet.
This research received favourable ethical review from
the University of Birmingham BMedSc Population
Sciences and Humanities Internal Ethics Review Committee
(reference number 2015–2016/C2/RA/18).
Twenty fathers made initial contact with the researcher, and
eight of these went on to participate. Twelve fathers chose
not to participate following initial contact. Fathers who
chose not to participate simply stopped replying, and did
not provide a reason after follow up attempts. Participants’
age ranged from 45 to 56 with a mean age of 51 ± 3.5 years
All participants were ‘White British’ except for one who
was ‘White Other’. All participants had an undergraduate
degree or higher level of education. Six participants were
employed full-time, with one participant self-employed and
one retired. The ages of offspring with ASD ranged from
8 to 24 with a mean age of 16.8 ± 4.79 years, and all
offspring were male except one. All but one participant had
other typically developing offspring, ranging in age from 8
to 24. For demographic information, see Table 1.
This sampling and recruitment strategy did lead to a
sample that was self-selected, certainly not representative,
and, unintentionally to a sample of men who had
predominantly older children. Whilst this would raise a significant
problem if our aim was to generalise, in this case we were
not seeking a representative sample from which to
generate generalisable and reproducible results; but rather
seeking to generate insight into the experience of the men who
did participate. Consistent with the goals, and limitations,
of qualitative research, our sample allows us to gain insight
into the issue under study from a particular perspective at
a particular point in time, and provides material that can
help us understand some aspects of the experience but not
to comprehensively map it nor, for example, to draw
meaningful comparison between sub-groups of participants. It
does not, nor could it ever, allow us to make claims about
all fathers with autistic offspring – and this is a feature of
this kind of qualitative research generally.
Data collection took place over a 6-week period from
January to February 2016. Semi-structured interviews were
used, which allowed participants to describe their
experiences in their own words and style, enabling the collection
Table 1 Demographic characteristics of participants
of detailed, reflective first-person accounts consistent with
interpretive phenomenological analysis (Holloway 2005;
Smith 2009). Prior to beginning data collection, AB
underwent a process of bracketing – recording biases, previous
experiences of, or assumptions about, the phenomenon in
question – in order to reduce the influence of
preconceptions associated with the research (Tufford and Newman
2012). Throughout the data collection period, AB kept a
study journal written immediately after each interview to
reflect on both the emotive and practical elements of each
interview (Koch 1998).
Interviews were broadly unstructured, with an initial
open question being asked (“Tell me about your
son/daughter with autism”) and conversation flowing from that, with
topics being explored as they were raised by the participant.
A topic guide was created, with input from ASD charities,
to be used in case participants did not volunteer stories
unsolicited. The topic guide included broad open
exploratory questions on a number of topics, including: rewarding
and challenging aspects of being a father of offspring with
ASD; coping methods and support used; experiences with
statutory and other services; perceptions of gender
differences in being a parent of someone with ASD. Verbal and
non-verbal prompts were used with care to avoid leading
participants, and clarification was sought during interviews.
Prior to beginning the interview, participants filled in
a consent form and demographic information form.
Interviews were conducted in a number of locations, including
the University of Birmingham and participant’s homes and
places of work. All interviews were face-to-face, and lasted
from 60 to 90 min.
Age of Gender of Age(s) of
offspring with offspring with typically
ASD ASD developing
Data analysis was concurrent with data collection.
Interviews were transcribed verbatim, and reviewed repeatedly
by AB in order to become familiar with the data,
including identifying more detailed passages and meaningful
statements (Smith 2009). Van Manen’s (1990) selective
highlighting approach was then used in order to identify
structures of the experience, sentences or sentence groups
which appear thematic of the phenomenon. These were
identified through a detailed line-by-line commentary of
each individual transcript. Notes were then made to
encapsulate these thematic statements, engaging in a
hermeneutic conversation with each transcript as a set of parts and as
a whole (Holloway 2005). These notes and structures were
then condensed to produce emergent themes. These were
then grouped into super-ordinate themes that encapsulated
relationships between emergent themes. This process was
conducted on each individual transcript. Notes made by AB
were reviewed by JI and GU in a process of analyst
triangulation, with disagreements in interpretation discussed and
resolved to improve methodological rigor (Patton 1999).
Moving from individual analysis to the group,
relationships between super-ordinate themes from each transcript
were then explored using mind maps, examining
convergence and divergence between participants. This allowed
the identification of essential themes, those which
characterise the phenomenon across individual experience and
are vital to the description and understanding of the lived
Four essential themes were identified in the data: the
path to acceptance; independence and integration;
battlefield fathers; and heterogeneity of support. Each theme is
described below, presented with selected illustrative
quotations from participants.
The Path to Acceptance
For these fathers, their experiences were described as a
“path”, a journey with “milestones” along the way. This
path began before the diagnosis of ASD, with all fathers
experiencing feelings of frustration, guilt and
embarrassment during the overall journey. This process, travelling
along the path, was viewed retrospectively as a journey
towards acceptance. It seemed that the ‘journey’ was a
narrative participants used to make sense of their experiences,
constructed on reflection. Once they had reached the point
of acceptance they could look back and recognise the
different stages as process – but they did not appear to have
recognised themselves as being on a journey as they were
The journey, as it was narrated by these fathers, began
before their children were diagnosed with ASD, and the
start of the journey was the point at which they realised
they had difficulties with their child’s behaviour. In the
period leading up to diagnosis, however, fathers reported
a gradual realisation that something was wrong,
beginning with their child having difficulties and behaviours that
they did not understand. These behaviours were often
initially attributed to other conditions, commonly hearing and
speech disorders, with ASD not considered: however as
these problems persisted, participants reported considering
more significant developmental problems; a realisation that
“this isn’t right”. In most cases, it was someone outside the
nuclear family who first mentioned ASD, including
teachers and grandparents. This initiated contact with healthcare
professionals, eventually leading to diagnosis. For Richard,
who had found his son’s behaviour infuriating and
perplexing, this diagnosis (when his son was around the age of ten)
was the defining point of his path to acceptance after years
“…it was described as…his wiring in his brain is
twisted, it just does things a different way. And once
we understood that, everything got a lot easier. And
some of the things that would irritate you when you
don’t understand…once you understood that is wasn’t
him being…rude or obnoxious…it’s just [son]. And
then that took a lot of pressure off…”
In contrast, participants whose children were diagnosed
at an earlier age described diagnosis as a very difficult
event, accompanied by an acute sense of loss. ASD was,
at that time, seen as an external factor, a “monster” which
had entered their life and led to the loss of the typically
developing child they had expected and prepared for. Steve
described his emotions:
“How did I feel? I mean obviously deeply upset,
because as a father…you kind of want your son to do
what you did which is play football and…have mates
and do well at school and have a career. And you
realise all that stuff isn’t gonna happen to your son…”
Some participants described feeling lost following the
diagnosis, not quite knowing how to proceed. A first major
step was seeking information, “reading up about it” in
order to better understand their child and ASD. Seeking
information about the disorder may help fathers to
maintain some sense of control over their circumstances – where
the diagnosis of ASD has ripped asunder their expectations
of parenthood. Whilst this was reported as a vitally
important step, allowing participants to begin to understand and
explore the possible implications of the diagnosis, having a
child with ASD still presented significant challenges which
neither a diagnosis nor research could prepare them for:
“the daily grind” as Eric described it. Practical difficulties
with daily tasks, such as toileting or going to the shops,
came to the fore; which could only really be understood
through first-hand experience. Fathers often felt judged as
parents and embarrassed in public when they were unable
to control their children’s behaviour; struggling “to ignore
people judging”, feeling like “a misfit” or “to blame” for
their child’s challenging behaviour. Frustration was an
oftreported emotion, especially during conflicts at home over
their child’s repetitive behaviours and inflexibility. Chris
described reaching his limits:
“…I didn’t know I could be pushed to a limit of
helplessness and aggression before all this happened… I’d
be shouting and I don’t shout…all kids make parents
shout but not to the point of frustration you get with
somebody with autism, cause it’s just you can’t stand
Frustration and anger were frequently followed by guilt,
“the guilt after you’ve exploded”, with many fathers
reporting feeling that their female partners seemed to manage
their frustrations more effectively.
Whilst there was no specific event participants pointed
to that led to acceptance of their child’s ASD and the
associated challenges, all fathers described a change in their
attitude to ASD over time, that they had “evolved” as a
father. Michael described this talking about his three
children with ASD:
“I think fundamentally, the change was that I began
to accept and love them as they were, not as I wanted
them to be or become…I ceased to think of it being
a monster or an invasion of their life by an alien who
had to be eradicated, and that it was them…it would
always be them, it wasn’t a question of more effort by
me to overcome it”
This kind of acceptance seemed to somewhat ameliorate
the negative emotions and frustrations participants had
previously felt, reducing frustration and conflict at home and
at least partially alleviating embarrassment and the effects
of perceived judgement in public. It seemed that frustration
and anger arose from a combined desire to change their
situation and a sense of helplessness. Realising they could
not change their situation, but they could change their
perception of it, seemed essential to many participants’
narratives of acceptance. Whilst this was reflected by all
participants, it was also clear that despite having arrived at a
state of acceptance and adaptation, the challenges of having
a child with ASD were still significant and present. In this
sense, ‘acceptance’ here does not refer to what might be
termed ‘resolution of the diagnosis’ (Milshtein et al. 2010),
but rather to a point at which a father ceases to view his
experience purely in terms of frustration, guilt or anger and
begins to view the child they have as a child qua child, as
opposed to a child qua problem.
From this position, fathers were able to reflect on some
of the positive changes that their experiences had brought
about in them, including “being more tolerant…accepting
and patient”. Eric described a change in his overall world
view, brought about through his experiences, becoming less
motivated by material gains and having a greater
appreciation for “simple” things, including spending quality time
with his son:
“…you come to appreciate the simple – the materia
[sic] becomes less…important. And…let’s say not
pack the time with…just ‘oh here’s a new toy, go and
play with it’…I think that’s what I said with the
journey, and learning curve…”
Independence and Integration
Encouraging long term independence for their children
with ASD, as well as imparting upon them the skills needed
to integrate into wider society, was seen as important by
most participants, with employment frequently raised as a
Independence was seen as a key goal, and participants
felt that it was their role to facilitate their child’s
progression towards it. This often centred on teaching basic skills
needed for an independent life, including cooking, cleaning
and personal hygiene. Steve described this as a source of
parental tension between mother and father with
independence as his, but not his partner’s, main goal:
“…I said ‘look when he gets to eighteen, twenty, he
shouldn’t be living at home, he should move
somewhere where he can independent as an adult’, she just
thinks he should be at home the whole time…her
parents come round and they’ll brush his teeth and I’ll
say ‘no no…he should brush his own teeth and we
should supervise him’.”
Fathers often perceived employment to have a pivotal
role in their children’s independence. This seemed to be
because of the routine and structure it would provide, as
well as providing them with a sense of achievement and
success, as Joe describes:
“I’m not too bothered about whether it’s particularly
well paid, I just hope it’s some sort of employment
that he can do, and he’ll feel comfortable in. Doesn’t
even have to be full time, just something to give him
some purpose and a feeling of achievement, of
Despite encouraging independence and employment,
fathers often described themselves as managing
expectations, both their children’s and their partner’s. This was a
difficult balance to strike between encouraging their
children to be positive but not unrealistic: a sense of
“cautious optimism”, “trying to tell him the ways of the world”.
There was a perception that succeeding in the world was
harder for their children, leading to adjustment of
goal-setting when compared to typically developing children. This
generally seemed to be a positive experience, with fathers
appreciating all achievements however small they may
appear to other people.
Alongside independence, fathers seemed to express a
desire for their children to be able to integrate and
“contribute” to, as well as being accepted and appreciated by,
society. This was both linked to societal acceptance of
ASD making the father feel increasingly accepted and less
judged or embarrassed, and a desire to see their children
succeed with success generally defined in terms of
independence, employment and integration.
Tom described the impact increased societal acceptance
and awareness of ASD had on him:
“…I think there’s more of a level of acceptance, and
that’s helped me…you don’t feel like you’re…a lone
voice trying to…defend your child in a world that
As their children seemed to integrate more, and be more
accepted, both through changes in societal attitude and
through their children’s own experiences, fathers reported
becoming better adjusted to having children with ASD.
Chris expressed this clearly:
“…I think when he…his language got better, he
started to partake more, he’s in mainstream school,
he’s got friends, you see all of these things that you
worried he wouldn’t have and you see…I dunno,
everything changes really”
Some participants also discussed their children’s desire
to integrate, and their subsequent efforts to teach them to
“fit in”. They discussed their children’s desire to not be
identified as different; especially difficult for those children
who were in specialist education. For Joe, whose son was
transitioning from specialist to mainstream education, this
was especially important:
“…he doesn’t want the other kids in his class to know.
So I’ve got this conversation to have with the
college…’can you support him in the most discrete kind
of way’. So I’ve been trying to…I’m forever saying to
him ‘do this do that…if you want people not to know
that you’re different don’t do that and don’t do that’…
so I feel that’s my duty at the moment”
Fathers frequently talked about themselves using
militarystyle terminology, including “fight”, “battle” and
“navigate”. This was most often referring to fighting “the
system”, with the father as an advocate for his children with
ASD, battling against a broken support system made up of
barriers and bureaucracy.
All fathers talked about their role as an advocate;
seeking out and accessing as much support as possible from
both public and third sector services. Statutory support was
often seen as incredibly difficult to “navigate”; with a
telling comment from Steve that there was no “route map” or
“welcome pack” to guide a father to sources of support.
A lack of cohesion between services meant that accessing
and obtaining each piece of support was a new battle to be
fought. Support described included educational statements,
disability living allowance and carers allowance, with the
battle to access each service presenting a new challenge.
Joe described this process as follows:
“You have to fight for everything, you have to reason
with people who will…quote procedure at you, do
their best not to help you in the politest way possible.
And you have to take them on.”
This constant battle was a significant stressor, with Steve
describing it as “hard work, very stressful, very draining,
required a lot of research and very costly”.
When discussing this process of fighting, fathers often
reflected on their role as an advocate and the skills needed
for this role. The need for confidence, education and
articulacy were mentioned, and fathers here considered
themselves lucky to have those skills and expressed concern for
those in a less fortunate position. As Robert put it:
“…I regard myself as quite articulate and…able to
look after myself, but you just wonder how other
people survive this sort of minefield, and that’s what
worries me as well because some people just can’t
cope with it…”
Despite possessing these skills, fathers often felt ignored
by professional services when talking about their children.
They frequently felt “misunderstood” or disregarded by
professionals, as Tom described:
“…at times I think we felt…that…you weren’t being
believed. ‘This is what’s going on’, but because that
then didn’t fit in to any…other previous…research or
‘oh he’s doing this that means it’s caused by this’, we
seemed to be in this vacuum at times…”
This was a difficult experience for fathers, who saw
themselves as “experts” in regard to their own children and
felt that professionals should give parents more of a voice
in their children’s care, especially with a condition
presenting across a spectrum. In Robert’s words:
“I think…that parents know their children and also
parents um…every case is different so it’s difficult
to say that, but…parents are…I think parents should
be taken in to a lot more credence of what they say,
and…take their advice and…listen.”
Heterogeneity of Support
When discussing what support fathers accessed to assist
their own coping, there was considerable heterogeneity.
There was notable difference around what forms of
support participants found useful, with different fathers relying
on different mechanisms, both formal and informal, to aid
their coping during challenging periods.
Formal support services aimed specifically at parents
of children with ASD were discussed, run by third sector
services based on a support group format. The majority of
fathers seemed averse to this type of support for various
reasons: for Chris, this support lacked a “personal” feel;
Michael felt alienated by the “victim” mentality; Eric felt
it was too “theoretical”; and Steve felt uncomfortable with
“opening up” in that setting. Tom however, despite feeling
that fathers were “afterthoughts” when support for parents
was considered, still found father-specific support groups
“…I found it very…helpful for me to go to that, to
understand I wasn’t the only one that was going
embarrassed, frustrated, impatient, angry then getting
guilt tripped after being angry. A lot of people were
all in the room…all seemed to be similar”
Even for Tom though, informal support from other
fathers was preferred, with a social network formed
through his son’s specialist school. Other participants felt
no need for formal support, as spousal support was enough
for them. This seemed to be related to the idea of parents as
experts on their own children, with the mother and father
supporting each other in meeting the unique challenges
their children presented. The parents became their “own
support network”, becoming more “self-reliant” as they
became more experienced. Chris described parents
providing each other with periods of respite as a “relay”, with the
father stepping in when the mother had reached her limits
and vice versa, with some participants seeing their main
role being to spend time in the evenings, weekends and
holidays doing activities with their children in order to provide
respite to the mother. Tom described this when discussing
“…it’s also to…share the burden. Burden, that’s a
horrible word to use, but it is to do your bit. So when
I’m around at weekends I very much see my role as
his father to do things with him, to give my wife some
respite. So I’ll take him up the park Sunday
morning…then we’ll go for a walk up to the paper shop…
things like that”
The value placed on peer support varied between fathers.
Some fathers preferred to keep their friends separate from
their difficulties at home, not discussing with friends the
impact that the challenges of ASD were having on their
lives. As described by Michael:
“I haven’t made it easy for my friends, because I have
tended to become more introverted…it is a way of
not wanting them to think that I am that tragic figure
defined by autism. And so therefore not to mention it,
on the surface to pretend that I have a relatively
Others described how having a child with ASD had
shaped their friendship groups, with those friends who
were understanding and made an effort to get to know
their children becoming closer friends. A similar process
occurred with the extended family, with a distinct
separation between those who were willing to help and those who
were not, as Chris explained:
“…so you think you’ve got your family and your
peers sorted by the time you’re thirty-five…and then
this happens and there’s a real separation with
people that can cope with it and people that can’t…and
you start to eradicate the people that can’t cope with it
cause they’re no use to you anymore.”
Relationships with peers who also had children with
ASD or other developmental disorders were especially
valuable for a number of fathers, allowing them to seek advice
and honestly express their frustrations and emotions
without fear of judgement.
Fathers in this study described similar experiences, and
gave similar meaning to these experiences, as
mothers of children with ASD. Moving towards acceptance of
ASD, with a subsequent improvement in coping, has been
expressed previously in research with mothers (Altiere and
von Kluge 2009). This process has been compared to stages
of grief (Kübler-Ross 2009), including in a recent study
investigating the experiences of fathers in America (Frye
2015). Given the reflections of fathers in this study that
diagnosis was comparable to the loss of a typically
developing child, this seems an appropriate comparison.
Arriving at this position of acceptance, for these fathers, involved
moving past frustration and anger—which is a notable
difference to the recorded experience of mothers, who tend to
report sadness. Compared to mothers, fathers of offspring
with ASD seem to report experiencing more anger than
sadness, and attempt to suppress their negative emotions rather
than express them (Gray 2003). Whilst this is consistent
with research exploring gender and coping (Thoits 1995),
hiding these frustrations from social networks or
disengaging with professional support, as described by some fathers
in this study, may be a barrier along the journey to
acceptance, perhaps leading to a longer and harder journey than
necessary. Encouraging fathers to express their frustrations
and feelings of grief, whilst reassuring them that these are
normal emotions to experience, may enable them to move
towards acceptance and an increased resilience more
easily. One way this might be achieved is through individual
parental guidance meetings, allowing fathers to raise issues
which are important to them and directly address them.
However, this is unlikely to be a panacea, given the
general reluctance of fathers to discuss these emotions with
friends or family, and the reluctance of some to seek and
accept professional support. Another option for fathers who
are experiencing grief, frustration and anger may be simply
to hear the stories of fathers who have survived the
journey. Fathers in this study only processed their experiences
as a journey, with a satisfactory end point, when reflecting
back on them. To hear from other fathers that the
challenging emotions they are experiencing are part of a process of
moving towards acceptance, and recognising this earlier,
may facilitate easier passage. The potential options
discussed here may be encompassed by acceptance and
commitment therapy (ACT; Hayes et al. 1999). As an approach
focusing on parental acceptance of challenging negative
emotions, overcoming negative thoughts, and identifying
and moving towards personal goals, ACT has been shown
to improve mental health outcomes of parents of offspring
with ASD (Blackledge and Hayes 2006). Through
accepting the futility of their efforts to change their situation and
changing their perception of the challenges faced, as
discussed by participants in this study, ACT may help fathers
achieve psychological acceptance and reduce the perceived
situational difficulties they experience, and should be
considered as a support option when engaging with fathers—
particularly those who are identified as struggling.
The perception of fathers in this study was of services
being obstructive as opposed to facilitative. This is
similarly expressed by mothers of offspring with ASD, with
difficulties accessing services for their offspring frequently
raised (Altiere and von Kluge 2009; Woodgate et al. 2008).
The need to fight and navigate through “the system” was a
source of stress for fathers in an already challenging
situation, beginning with a lack of direction at diagnosis. This
lack of information on available support was raised in a
recent survey of parents in the United Kingdom, with the
majority (61%) of parents dissatisfied with the level of
postdiagnostic information provided (Crane et al. 2016). To
better support both fathers and mothers at diagnosis, and to
ensure they feel directed towards support, an electronic or
paper resource containing information on regional services
available for parents as well as for the individual diagnosed
with ASD might be useful. However, as the father’s
journey continues, and he becomes an expert in the needs of
his own offspring, this level of general support may be less
useful. To reduce the perception of service providers as
a part of a system to battle against, health and social care
professionals should ensure parents have been listened to
when discussing the needs of their offspring.
Fathers in this study placed particular importance on
their offspring becoming independent and integrating into
wider society, and saw themselves as having an
important role in helping their children achieve this. It may help
fathers feel more engaged and positive about this role if
professional services engage directly with these issues,
acknowledging that this may be a concern, particularly for
fathers: raising this topic and opening up space (either in a
professional or an informal social setting) to talk about it
may allow fathers to better express their needs and allow
them to feel more supported in this role. Recent research
with fathers transitioning to fatherhood has suggested,
however, that simply opening up space to talk may not be
enough, as fathers may be reluctant to raise concerns that
they perceive as being ‘about them’ (Ives 2014). Rather,
they may need active permission and invitation to talk about
areas of concern to them. Additionally, given that being a
father to someone with ASD is an ongoing experience with
each developmental stage posing new challenges, this same
principle will likely apply to all stages of the family life
cycle (which may well be life-long). It would be important
for such spaces to be available at all stages of the journey,
until such point as they are no longer needed; from
discussion about expectations of normality at the antenatal stage
to discussion about employment and independence during
adolescent education. These spaces will be useful for two
discrete purposes: first as a way of supporting fathers who
do not need anything quite as interventionist as ACT and,
second, to create spaces where those who are struggling
can both be identified and self-identify. What these spaces
might look like, what form the support should come in,
and who should provide it, are incredibly challenging
questions; made more complex by the obvious and inevitable
lack of resources and the difficulty of engaging with fathers
who may not want it or recognise they might be in need.
The data presented above show that different men
appreciate different kinds of support, at different times, and some
may have no interest in external support; so the one thing
we can say with relative certainty is that one size will not
fit all. Neither our data, nor any other data we have seen,
provide a simple answer to this question; and we are wary
of making a simplistic recommendation in response to
these concerns that fathers need access to support groups or
to dedicated expert professional services that are available
throughout the life course etc. These would be no bad thing
in principle, but the former seems unlikely to be accessed,
and the latter is resource intensive to the point of being
highly unlikely, if not impossible. We can, however,
consider longer term approaches and theorise about what these
spaces might need to look like and what changes might be
necessary to allow them to be created. For this we draw on
recent research that theorises ‘deliberative fatherhood’(Ives
2015), which proposes that in the absence of clear
substantive success criteria for fatherhood, ‘good’ fatherhood has
to be measured against formal process driven criteria based
around the search for better practice; on the understanding
that fatherhood is a moral and relational practice, that good
practice is context dependent, and that fathering practice is
fallible and uncertain. To quote at length:
“Conscientiously engaging in the process of
deliberation with the goal of being a morally good father (and
partner, and man), accepting that there will be
reasonable disagreement about what achieving this goal
involves, and being aware that achieving that goal
requires negotiation and compromise, admits the
possibility that he could get it ‘right’. It does not
guarantee that he has. When we do not know precisely where
the goal is, or what shape it is, the best we can do is
ensure that we are running towards where we think it
is, on the understanding that we might have to change
direction. It is only by deliberating that we can ever
become aware of the need to change direction. We do
not have a clear and universal idea of what morally
optimal fatherhood looks like, and until we do, a good
father can only be someone who is actively trying to
find out.” (p292-3)
This suggests that the way to support a father of an ASD
child (or any father) is to facilitate the creation of spaces
that allow this deliberation to occur; that does not judge
or pretend that there is a clear and correct path to take
along this journey; is responsive and available at the time
it is needed; and accepts that different fathers and
different families may have differently legitimate goals. These
spaces might be literal physical spaces where discussions
and deliberation can take place with others, or they may be
metaphoric ‘spaces’ that allow, and give permission, for
individuals to deliberate privately and in their own time.
It seems unlikely that a single service or single provider
could achieve this; nor that this could be achieved
independently of cultural shifts in our thinking about fatherhood
(and parenting) more generally; or without a move away
from idealised notions of family and normalcy in general
that is reliant on normatively loaded expertise that dictates
in the abstract what is normal and what is acceptable. What
is required, however, at a very basic level, is an
incorporation of greater knowledge and understanding about ASD
children and parents into current service provision, from
antenatal care to education, that allows realistic
expectations to be formed, conversations about ASD to be had,
awareness to be raised, and support for parents to anticipate
and reflect on problems and finding solutions that work for
them. That anticipation and reflection will likely become
more effective the more research is done in the area and
the better we come to understand the range of experiences
associated with parenting an ASD child.
Given the positive impact of wider public acceptance on
fathers’ experiences, this study does support calls for
further knowledge exchange between professionals and the
general public about ASD (Pellicano et al. 2014).
Increasing public awareness about the everyday realities of having
offspring with ASD may reduce associative stigma
(Farrugia 2009) in public, and allow fathers to feel that both they
and their offspring are accepted by society, and therefore
feel more able to accept ASD themselves.
Whilst fathers saw employment as an important goal
for their offspring, they also expressed concern about how
attainable that goal was. These concerns are well founded,
with only 15% of adults with ASD in the United Kingdom
in full-time paid employment (Rosenblatt 2008). Supported
employment schemes, designed to assist people with
disabilities find and retain employment, have been shown to
be both cost effective and clinically effective. For example,
the ‘Prospects’ scheme run by the National Autistic Society
has achieved 67% employment rates (Howlin et al. 2005).
Individuals with ASD who access these schemes may
have improved self-esteem, reduced social isolation and
improved access to social networks (Mavranezouli et al.
2013): seeing their offspring achieve these outcomes, or
being aware of its possibility and how to help achieve it,
would arguably be beneficial to fathers. Supported
employment schemes are currently recommended by the National
Institute for Health and Care Excellence for adults with
ASD (National Institute for Health and Care Excellence
2012). Increasing awareness of these schemes amongst
fathers may provide a greater sense of hope for the future,
and allow fathers to assist in accessing these schemes when
This study has a number of limitations. As each
participant completed a single interview, they could only reflect
on how their experience had changed over time. A
longitudinal study may better capture the evolution of fathers’
experiences. The sample in this study also lacked
diversity in ethnicity, age, educational and employment status.
As family background, including race/ethnicity, household
income and education, has been shown to predict parents’
expectations for their offspring with ASD (Kirby 2016),
variations in these demographic areas may lead to
differences in experience. Fathers in this sample were recruited
using methods involving ASD support charities, therefore
participants are those who are at least aware of support
services. Fathers who are not engaged with these services—
and indeed those fathers who chose not to participate in
this research—may have different experiences and
opinions, and should be considered in future investigations. The
homogenous nature of the participants in this research, and
their active engagement both with support services and the
research process, limits the theoretical generalisability of
the findings presented.
The sample underrepresented fathers who have
daughters with ASD, and it is unclear whether the findings are
related to parenting a boy with ASD, or a child with ASD.
It is possible that some fathers will have different
expectations of, and attitudes towards, male and female children,
and that may not have been captured in this study.
Similarly, the age range of offspring with ASD in this sample
is relatively narrow, with the majority of the sample in
their teenage years or older. This relative lack of offspring
in early childhood further limits the generalisability of this
study: fathers with older offspring may perceive their
situation through a different lens to that of fathers with younger
offspring, who may have had a more recent diagnosis and
would be at different developmental stages compared to
the offspring in this sample. On the other hand, fatherhood
studies in general do tend to focus on fathers with younger
children, and in recognition that fathering continues beyond
the early years this study provides some insight into
fathering at a stage that is generally understudied.
Fathers describe their experiences as a journey, with
acceptance as a turning point at which their frustrations are
reduced. Discussing this process with fathers as it is
happening may allow a more positive perspective during
difficult periods. Social acceptance and independence for their
offspring are seen as important goals, which fathers’
journeys aim towards. By openly discussing these issues with
fathers they may feel more engaged with service providers,
and feel a greater sense of hope of achieving these goals.
By ensuring fathers feel able to express their frustrations
and feel heard by health and social care professionals, they
may be able to move towards acceptance more easily.
Acknowledgments We would like to thank the fathers who
participated in this study for their time and support, Liza Dresner and
Dr Elisabeth Hurley for facilitating this research, and the Wolfson
Author Contributions The project was conceived by AB. It was
developed by AB, JI and GU for an undergraduate research project
carried out by AB under the supervision of JI and GU. Data collection
and primary analysis was carried out by AB, with JI and GU
contributing to the analysis reported in this paper. The first draft was written
by AB, which was then revised with JI and GU. All authors
contributed to the writing of the paper, and had intellectual input.
Compliance with Ethical Standards
Ethical Standards All procedures performed in studies involving
human participants were in accordance with the ethical standards of
the institutional and/or national research committee and with the 1964
Helsinki declaration and its later amendments or comparable ethical
Informed Consent Informed consent was obtained from all
individual participants included in the study.
Open Access This article is distributed under the terms of the
Creative Commons Attribution 4.0 International License (http://
creativecommons.org/licenses/by/4.0/), which permits unrestricted
use, distribution, and reproduction in any medium, provided you give
appropriate credit to the original author(s) and the source, provide a
link to the Creative Commons license, and indicate if changes were
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