Abstract

Setting the scene with a clinical example

The Brown family (names and details have been changed to ensure confidentiality) is a two-parent white-British family with early teenage sons, Callum and David. Both parents work in professional jobs outside of the home. Callum and David and the family are not facing environmental or social stressors at the present time. One aspect of Callum’s identity is the diagnosis of an autism spectrum condition (ASC). Like his parents and brother, he is an intellectually able young person, who is talented in specific ways, but who greatly struggles in social situations where he is unclear about what is expected of him. These difficulties have troubled him since he started school but it was not until he was eight years old that he received a diagnosis of, as was then known, Asperger’s Syndrome. Each family member has a different idea about the cause of Callum’s difficulties and whose ‘problem’ it is, although everyone including Callum believes that there is something ‘wrong’ with him. The family struggle to spend time all together as the parents find it difficult to understand why Callum reacts in particular ways to their encouragements to try new things and have new experiences. The family don’t yet agree about what, and who, needs to change. Overall, the family is experiencing stress, distress and frustration, which causes great difficulty in each family dyad and across the whole family system.

In joining with the family in conversation, I experience a constant sense of frustrated and missed relational connection. Each family member frequently makes engaging overtures to another but these seem to land or to be experienced in unintended ways. Warm, calm overtures quickly escalate into frustrated WHY WON’T YOU JUST angry verbal missiles, hurled around the room.

I sit with the family feeling very sad, not quite knowing how I might build a working therapeutic relationship with each person and with the family as a whole. My aim, through temporarily being ‘with’ the family in their discussions and disagreements, is to help them find different and more comfortable ways of being with each other and in going on in their conversations and daily lives.

As our conversations continue, I try to join with each family member and open a dialogue about the impact and meanings of this thing called Asperger’s Syndrome (AS). I try to hold the diagnosis centrally but lightly, using my knowledge of ASCs to inform and guide but not to blind or constrain my questions.

Although people with ASCs present in unique ways, the struggles faced by this family are typical of those I see in my clinic.

2. What are autism spectrum conditions?

The answer to this question is complex and evolving. Ideas as to what autism ‘is’, have changed greatly since the term autism, and slightly later the term Asperger’s Syndrome, were introduced in the 1940’s. There is a lively debate within the critical psychiatry field as to whether ‘autism’ is even a meaningful diagnostic category (see Timimi, 2011). While these debates are very important, they will not be addressed in this paper.

According to current diagnostic criteria, Autism Disorders are lifelong neurodevelopmental conditions, which range in severity but which significantly impair everyday functioning with deficits in two core domains. These are: persistent deficits in social communication and social interaction across multiple contexts, and restricted, repetitive patterns of behavior, interests, or activities (APA, 2013).

A brief word on language. While the diagnostic label used by the DSM-5 is Autism Spectrum Disorder, Autism Spectrum Condition (ASC), is the term coined by Baron-Cohen among others (2009) to reflect the notion that not all symptoms of the condition reflect disorder. While many of the symptoms associated with an ASC can be deeply troubling and impairing, some aspects can be helpful, enjoyable and are to be celebrated. Indeed in his recent book outlining the history of the condition, Silberman highlights how the world would be a much poorer place, in all kinds of ways, had people who think ‘differently’ not achieved what they have. (Silberman, 2015).

Prevalence rates sit at around 1% (Baron-Cohen et al., 2009). Around 80% of people who are diagnosed with an ASC have average or above average cognitive ability. More males than females are diagnosed and while this may reflect aspects of the condition it may also reflect the ways in which the condition is diagnosed in the context of society’s differing expectations of men’s and women’s social skills (Mandy et al., 2012; Shefcyk, 2015).

People with ASCs are more likely than those without ASCs to experience a range of psychological/mental health difficulties as they struggle to negotiate the social world, and therefore people with ASCs, across the lifespan, are more likely to seek access to psychological well-being/mental health services. Hundreds of papers have highlighted the stresses, strains and joys experienced by parents of children with an ASC and the ways in which families attempt to manage the challenges of parenting a child who has social communication differences.

Thousands of papers have been published which try to explicate the causes of ASCs. A current, widely held view is that there is a multifactorial basis to ASC which includes a polygenetic, neurobiological and developmental basis (Minshew & Williams, 2007). Much research over many years has tried to find a ‘home’ in the brain for ASCs and the difficulty of doing so may be because either there is no straightforward neurological home, or because not enough is currently understood about the brain as a tightly interconnected system (Cozolino, 2014) so as to be able to formulate how a condition with such a wide range of symptoms can arise.

Influenced by Bronfenbrenner’s social ecological model (Bronfenbrenner, 1979) together with a reading of some of the neuroscientific literature (see Celano, 2013) it is increasingly accepted that social and environmental factors exacerbate or suppress the expression of those genetic and neurobiological factors which give rise to the features of ASC. The development of all human beings is influenced both by genetic, social and environmental factors so it cannot be any different for people who with a diagnosis of an ASC (see Fig. 1).

Fig.1

The way in which the child’s brain ‘works’, (the brain itself being influenced by a variety of intrinsic and extrinsic factors), affects all aspects of the child’s functioning. Over time, both implicative and contextual ...

Crittenden et al.’s position (2014) is helpful to systemic practitioners, whereby they suggest that genetic, neurological, psychological, relational and contextual factors may all coalesce to yield the range of symptoms currently associated with a diagnosis of ASC.

Accepting this multifactorial aetiology in which social factors are in part involved in the development of the condition does not in any way suggest that parents are to blame for their children’s difficulties. Early practitioners suggested that mothers ‘caused’ their children’s autism by their emotionally distant and cold nature (Kanner, 1944; Bettelheim, 1967). Such ideas were quickly rejected by the scientific community but seem to have had the effect of at least temporarily delaying the development of helpful and constructive practices to support families in promoting their children’s development.

Therefore, if both intrinsic and extrinsic processes lead to patterns of communication and behaviour commensurate with an ASC, if relationships can influence the way the brain is ‘built’ especially in the very early years (e.g. Siegel, 2012) and if the brain is particularly plastic in its first couple of decades, then there gives rise to the possibility for intervention to produce change, not only at the level of relationship, action and meaning but also, at the level of neural connectivity.

The process of relational mis-attunement is thought to start early, as a parent or carer tries to relate to an infant with an atypical neurodevelopmental profile who responds in unexpected ways. As time goes on, parents try to act in more extreme, directive ways in order to try and build a relationship with their children (Hobson, 2004; Gutstein, 2009; Crittenden et al., 2012). So, if the relational dance between child and carer can be revisited and somehow reset, or if ‘ordinary’ parent-infant interactions can be promoted (Wan et al., 2013; Green et al., 2015), then it might be possible to build social communication in a more ordinary way. By ‘ordinary’ it is not implied that there is a ‘right’ or normative way to do social communication but that it is possible to build ways of relating that feel more comfortable and emotionally connected for the child with ASC and their family.

The ideas developed above are particularly attractive to systemic practitioners as they suggest that though therapeutic, relational work, it might be possible to help the parent-and-child, and the family, repair uncomfortable patterns of interacting and develop communicative patterns that feel more socially connected for all involved.

3. Systemic psychotherapy with people with autism spectrum conditions

Family and systemic psychotherapy is increasingly found to be effective at helping relieve both individual and relationship distress. Given that the aim of family therapy is, in its broadest terms, to help people relate more easily with each other, and given that ASCs are essentially a problem of social communication and relating, there is great scope for family therapists to work with people of all ages who have ASCs and their relational networks.

NICE guidelines for working with children with ASCs recommend psychosocial interventions to treat the core features of autism (CG128, 2014). They specify interventions that increase parents’, carers’, teachers’ or peers’ understanding of, and sensitivity and responsiveness to, the child or young person’s patterns of communication and interaction.

NICE guidelines for adults also recommend psychosocial interventions to remediate the core features of autism. The focus of the adult guidelines is on behavioural/social learning interventions, which have modeling, decision-making and teaching social rules as a focus (CG142, 2012).

While family therapy is not specifically recommended within the NICE guidelines, the targets for intervention, as described above, are clearly commensurate with systemic interventions.

Some thirty years ago, Harris clearly called for a systemic perspective in working with families of children with autism, and highlighted how attention should be paid to the family context and to the impact of any intervention on the family (Harris, 1983, 1984). This call has slowly been taken up and described in the literature.

4. Contemporary systemic psychotherapy

Contemporary systemic psychotherapists (also known as family therapists) regard families as experts in and on their own lives. Systemic practice holds problems as relational rather than intrinsic to one member of a system, without denying that each part of a system/each family member brings their own unique pattern of strengths and challenges (Dallos & Draper, 2010).

Systemic psychotherapists are usually curious about the psychiatric diagnostic labels which families bring with them to the therapeutic conversation. Family therapists, especially those who subscribe to a social constructionist or critical realist ontology, typically work to deconstruct the meaning of THIS label to THIS person in THIS family and THIS point in the life cycle (Brown, 1995; Wilson, 2013; Helps, 2016) and to open up possibilities of acting and relating that may have become closed down by assumptions and beliefs connected to the diagnostic label.

5. What do family therapists do with families where there is someone with ASC?

There are a wealth of discussion articles regarding how family therapists might be useful to families where there is ASC, but few papers have been published regarding what actually goes on in practice. No systematic review of the current literature has been published. This paper provides a systematic literature review of both opinion and research in this field.

6. Summary and suggestions for future research

The needs and development of one family member recursively and bi-directionally affect and are affected by the needs and development of another family member (Fig. 1). This applies to families where children (whatever their age) follow an ordinary developmental course and to families where children’s development takes a different path (Cridland et al., 2014; Helps, 2016). Family therapists are well placed to work with families where relationships and patterns of communication have gone awry, whatever has caused this. The extant literature shows how systemic therapists have described and how they have started to test out what works in working with families where there is ASC.

Going back to Callum and his family, the review of the literature shows how family therapists might work therapeutically with Callum and his family to address these difficulties. Therapeutic work needs to involve working with different parts of the family system at different times. Therapeutic conversations will move between fact and meaning and will focus in and out, to consider the child, the family, and the family in context.

Based on the published literature, this systematic review covers the small but important body of practice-based evidence about what works in working with families where there is a child or young person with ASC. It is clear that systemic, narrative approaches hold promise for families where a person has ASC. These interventions work to open up possibilities of thinking, being and relating that have previously become closed down by ASC.

There are no large randomised controlled trials that have explored and evaluated whether and how family therapy ‘works’ with people with ASCs and their families. While the academic scientific community might appreciate such studies, they are perhaps not so important as are small-scale qualitative descriptions of process and practice, which can guide and inform contemporary systemic practice. Personal reflections on practice together with small scale, qualitative studies exploring aspects of practice may provide the greatest resonance for practitioners who want to reflect on and develop their knowledge and skills. Following Neely et al. (2012) more practice-based evidence that highlights the reflexive processes of the therapist as contributing to the work would be of benefit (e.g. Evans et al., 2014).

Following the call by Carr (2010) to family therapy researchers in general, further research is required regarding what works, for whom and how. Specific to families where there is a person with ASC, there is much to be done. All future research would benefit from consideration of the intersections of the Social GRRAACCEESS (Burnham, 1992, 2012) to paint a fuller picture of the complexities of family life when bringing up a child who requires different kinds of parenting. Such attention might help researchers make sense of why children with very similar presentations can make such different progress (Seal, 2013).

Further research which develops extant narrative practices on how exploring the meaning of the condition to the child and family would be of benefit. Studies exploring the progress and outcomes of therapeutic work with parents who themselves have ASC or with families where there are very young or grown-up children with ASC are welcomed. Research which explores contemporary systemic practices such as the use of social-constructionist, dialogical approaches, and the tools of therapeutic letters, the one-way screen or the reflecting team would also be illuminating. Finally, research that attends to processes within therapeutic work, such as the therapeutic alliance and embodied, non-verbal aspects of systemic practice will also be helpful to practitioners.

ASCs can be seen, at a neurological level, as a problem of interconnectivity (Minshew et al., 2007; Maximo et al., 2014). It is an exciting heuristic to consider the parallels between problems with connectivity at the level of the brain and connectivity in social relationships. While caution is required in making claims about the evidence regarding links between changes at the level of the brain linked to therapeutic work (Dawson et al., 2012; Celano, 2012) in time, it might be possible to track the bi-directional impact of systemic work at all levels of the biopsychosocial ecological model, not only on communication, beliefs, actions and relationships but also on the neural connections that are made as a result of having conversations that enhance the process of social communication.

References