PARENTAL COUNSELLING FOLLOWING THE DIAGNOSIS OF A CHILD W ITH AUTISM SPECTRUM DISORDER

Autism spectrum disorder (ASD) is recognised as one of the fastest-growing developmental disabilities, affecting over 1.5 million Americans (Twoy et al., 2007). Furthermore, there has been an increase in eight-year-old children diagnosed with ASD from one in 159 in 2006, to one in 59 in 2018 (Centers for Disease Control and Prevention, 2018). In comparison, equivalent estimates in the Australian context have been one to two per 200 within a similar timeframe (Williams et al., 2008). ASD comprises a range of syndromes that are characterised by difficulties in communication and social interactions, while also possibly including repetitive behaviours, restricted interests and challenges associated with emotion/mood (Fernandez-Alcantara et al., 2016; Gray, 2006). Underlying ASD exists a deficient in Theory of Mind, whereby an individual has trouble perceiving thoughts and feelings that are similar/different in others (Ackerman & Kyuchukov, 2018).

For parents, the diagnosis of a child with ASD has been shown to be felt with the same impact as the death of a child (Fernandez-Alcantra et al., 2016), even though their child is still present and able to function well in various ways. Parents may therefore experience strong feelings of grief as many of the hopes they had for their child are lost, and as they come to terms with this new reality (Krishnan et al., 2017). This grief is due to an ‘ambiguous loss’, as the child is still physically present but is psychologically or emotionally distant (Boss, 1999). That ambiguous loss causes a range of presentations
in family members with cognitive, emotional and/or behavioural elements (Winouker & Harris, 2012) makes it an imperative for counsellors to understand how to effectively work with these families in light of a diagnosis of ASD.

There is often a considerable amount of time between a parent’s initial observations, which can occur from when the child is as young as 12 to 18 months of age, through to a formal diagnosis, which on average is made at between five and six years of age (Keenan et al., 2010). Diagnosis can also be problematic due to a reliance on the behavioural observations of untrained parents and the ability of the clinician to collect reliable information regarding the child’s historical and current situation (Keenan et al., 2010). Therefore, as part of the diagnostic process, parents devote considerable time to personal reflection and home- based investigation of their child’s presentation in order to develop their own understanding of their child’s clinical picture (Fernandez-Alcantra et al., 2016; Mulligan et al., 2012).

During this pre-diagnosis stage, parental coping may be problematic and peremptory grief present. While coping will be assisted by a timely diagnosis (Keenan et al., 2010), family support can be misguided and cause stress – for example, when grandparents or siblings
try to decrease parental worry by dismissing their concerns regarding the child’s behaviour (Krishnan et al., 2017; Mulligan et al., 2012; O’Brien, 2007). This is something for a counsellor working with parents to be aware of.

Parents may feel frustration at the waiting times for a diagnosis and the uncertainty at what that diagnosis may be (Fernandez-Alcantara et al., 2016). Yet upon receiving a diagnosis of ASD for their child, parents can show an initial feeling of relief (Mulligan et al., 2012), for now they have a clear direction in which to pursue support and resourcing. However, feelings of shock, distress, fear, denial, sadness, anger, helplessness and guilt can sooner or later arise (Fernandez-Alcantara et al., 2016). These emotions are associated with:

A second, or adjustment, grief phase begins when parents pursue treatment and learn how to adapt to day-to-day living in light of ASD (Garguilo, 2009; Twoy et al., 2007). This second phase can be associated with the family becoming more vulnerable if they begin to develop maladaptive coping when trying to manage stressors (Twoy et al., 2007). In particular, there are now some key factors that influence loss ambiguity and thus coping. O’Brien (2007) applied the work of Boss and Couden (2002) and Caron, Boss and Mortimer (1999) to suggest factors significant in contributing to family distress. They are:

It is important to remember that these three phases are cyclical in nature. Each new stressor that is introduced into the family may result in retrograde movement to a previous grief phase before further adaptation can take place. This cycling is particularly reflective of the dual-process model outlined above (Stroebe & Schutte, 2010), whereby there is an oscillation between restorative and loss-oriented stressors. Finally, it is useful to note that these three stages of grief align with Worden’s (2018) four tasks of mourning, even though those are usually considered to occur with permanent loss. The primary phase relates closely to accepting the reality of the loss and processing the pain of grief; the second phase of pursuing treatment relates to adjusting to a world where, rather than the person being lost, the expectations of how things could have been are lost; and the tertiary phase concerns learning how to create a new life in light of the grief of the diagnosis.

As noted above, parents can start experiencing grief during their child’s assessment phase. This may be characterised by feelings of distress due to a potential lack of clear advice, a failure to understand the assessment process and what is required of them in organising and undertaking the assessment, as well as the anticipation of the consequences this will inevitably have on their lives (Keenan et al., 2010; Mansell & Morris, 2004). This distress can continue following diagnosis, along with feelings of disbelief, anxiety, anger and sadness (Bravo-Benitez et al., 2019).

Grief for parents can be compounded by the lack of knowledge/training they may have regarding ASD, a lack of resources, and an ongoing focus on their child’s psychosocial needs rather than their own wellbeing (Krishnan et al., 2017). Parents may even feel pressured to become an ‘expert’ and an ‘advocate’ for their child (Mulligan et al., 2012). Although taking on these roles are important ways of supporting their child, parents now run the risk of ‘identity ambiguity’, where the child’s disability determines who the parents now see themselves as being (O’Brien, 2007). Of course, relational stress between parents may now become apparent in addition to those stressors related to parenting their child.

Interestingly, parents who have experienced grief associated with an ASD diagnosis have recommended a variety of professional helping strategies. For example, the delivery of this life- changing news should be within a framework bounded by hope and inclusiveness. Hope is an important element for counsellors. In fact, the manner of the professional involved in delivering the diagnosis has been shown to be a significant predictor of parental satisfaction with the diagnostic process. Inappropriate delivery practices that may lead to unnecessary distress include delivering the diagnosis with the child in the room, providing the diagnostic information over the phone or in writing, and not showing an appreciation that the diagnosis may in fact be unexpected (Crane et al., 2016). Furthermore, evidence suggests that parents feel more included and confident when a specialist team is involved in their child’s evaluation after diagnosis (Twoy et al., 2007; Keenan et al., 2010). These ideas sum together to suggest that, overall, there needs to be an effective and ongoing partnership between parents and professionals to reduce distress and grief (Crane et al., 2016; Howlin & Moore, 1997; Mulligan et al., 2012).

The beginning of the therapeutic process involves accepting the loss. Parents should be given the opportunity to state that circumstances are not as they were expecting, or wishing. The image of their child they held to needs to be relinquished, as not doing so has been shown to compound the effects of ambiguous loss (O’Brien, 2007). It is then important to move into a restoration activity of reframing, where parents can redefine their personal/family goals and priorities (Twoy et al., 2007). Part of this process involves acknowledging that there will be ongoing ambiguity and, therefore, a need to continually revisit and reshape goals and priorities as their child grows. Being aware of this is important as unacknowledged/unprocessed ambiguity has been shown to contribute to perceived stress more than the actual characteristics and behaviours of the child (Boss, 2006).

The therapist should also identify the resources the family has available to them across three levels: (1) each individual parent; (2) the family unit; and (3) the wider community (Twoy et al., 2007). When families show a balance between an individual member’s knowledge/skills, an ability for the whole family to make decisions and to resolve conflict, and accessing support from the wider family/community, they are more able to make positive adjustments and adaptations (Twoy et al., 2007). This balance of resources then forms the basis of an ongoing therapeutic relationship that can be accessed by parents as new stressors become apparent in the family unit.

In suggesting any therapeutic model, it is important to keep in mind factors that may influence the efficacy of treatment. Current research about the experience of parents with a child diagnosed with ASD is heavily skewed towards mothers (Fernandez-Alcantara et al., 2016; Gray, 2006; Keenan et al., 2010; Krishnan et al., 2017; O’Brien, 2007), with the exclusion of fathers being attributed to difficulties in accessing research participants
(Phares et al., 2010), gender stereotypes associated with child-rearing (Flippin & Crais, 2011), and the flexibility of data collection aligned with the requirements of their employment (Fabiano, 2007), where work hours and availability of fathers is not conducive to data collection. Even in the face of such methodological limitations, it has been suggested that there is very little to no difference between mothers and fathers in how they cope with a diagnosis of ASD (Frye, 2016). However, the impact of an ASD diagnosis on fathers has also been reported to be experienced more indirectly, through the
stress experienced by the mother (McCafferty & McCutcheon, 2021). Therefore it is prudent for therapists to tailor support to the specific needs of parents, considering gender (Legg & Tickle, 2019), and note men’s help seeking behaviour (Potter, 2017).

Another factor that may influence treatment efficacy is the claim that boys are more likely to have ASD than girls (Baron-Cohen et al., 2001; Kreiser & White, 2014). This pervasive claim is brought into question, however, with further evidence suggesting that there is a difference in symptom expression between genders (Mandy et al., 2011) as well as the age of diagnosis (Giarelli et al., 2010). This directly impacts the parental perception and ability to cope given these differences between genders, and has a greater impact if the father also has ASD. In fact, fathers with ASD have been shown also to be less effective in parenting, particularly managing conflict and emotional distress, with the same not being so for mothers with an ASD diagnosis (Pow Lau et al., 2016).

Lastly, in developing a therapeutic model for assisting parents of a child with ASD, the disability research generally shows important differences in parents’ coping as a function of gender and age. Mothers and middle-aged adults are more likely to approach coping through emotional strategies or intuitive experiences, whereas fathers and younger adults are more likely to use a problem-solving approach or instrumental experiences (Fernadez-Alcantara et al., 2016; Lazarus, 1999). Research has also shown that a strengths-based problem-solving approach may be more helpful post-diagnosis (Oren et al., 2010), as opposed to focusing on emotional attributes (Altiere & von Kluge, 2009). To this end, female and older parents may require additional coping strategies.

Parents often feel there is limited support when their child is diagnosed with ASD. They may even require professional help to work through their reaction to the diagnosis
(Wachtel & Carter, 2008), support in managing their own stress, and validation of the range of new roles and duties put upon them (Hoogsteen & Woodgate, 2013; Wachtel & Carter, 2008). Parents will also often oscillate between diagnosis acceptance and the experience of obstacles to this acceptance. They may also cycle between primary, secondary and tertiary phases of grief as they come to terms with having a child with ASD.

The dual-process model of grief is the most relevant model to base treatment on as the oscillation between loss and restoration-oriented processes is well-suited to ambiguous loss. Treatment should consist of an approach tailored to the needs of both parents, particularly in relation to their expression of grief and coping. Therapeutic space should be given to parents to move between expressing their experiences of loss together with the experiences of adaptation and new beginnings associated with a restorative lens. They need to be reassured that both positive and negative feelings are normal following a diagnosis of a child with ASD. They also need to be informed that such feelings may, in different ways, present throughout their lives as they grow and learn together with their child. Ambiguous loss due to the diagnosis of a child with ASD is therefore a lifelong journey. More specifically, managing, not resolving, ambiguity lies at the core of successful therapy with parents who are grieving. However, around this must be wrapped: (1) distress tolerance and the identification of psychosocial resources; (2) an avoidance of identity ambiguity; (3) an awareness of the impact of gender, culture and parental age; (4) grief/loss work as commonly understood; and, of course, (5) hope. ■

PARENTAL COUNSELLING FOLLOWING THE DIAGNOSIS OF A CHILD WITH AUTISM SPECTRUM DISORDER