Living with autism: What's your superpower? A personal reflection

Background and prevalence of autism

The word autism originates from the Greek word ‘autos’, meaning ‘self’, and implies an isolated self whereby there are conditions in which a person is removed from social interaction (Mercati and Chaste, 2015). Autism is now referred to as autism spectrum disorder (ASD), with Asperger's and high-functioning autism aligning (Attwood, 2013; National Autistic Society (NAS), 2015). There appears to be an array of terminology linked to autism, which is commonly referred to as a disability (NHS Choices, 2014; Gillespie-Lynch et al, 2015), a condition (NHS Choices, 2014), a disorder (Volkmar et al, 2000; American Psychiatric Association, 2013), a difference (Baron-Cohen, 2000), or as being neurocomplex (Woodgate et al, 2008) or neurodiverse (Kapp et al, 2013), as opposed to neurotypical for those without autism (Attwood, 2008). These terms may lead to confusion in interpretation and articulation and, therefore, it is imperative that a definition is used that clearly communicates the nature of autism. Through an amalgamation of theoretical texts, autism is a complex lifelong neurodevelopmental disability/disorder that affects how a person communicates with, and relates to, other people (Woodgate et al, 2008; D'Astous et al, 2014; NAS, 2015). To some extent, however, the way autism is defined is dependent on the individual, the theoretical doctrine and the context applied. There are typically three main attributes of autism (Figure 1) and these are known as the ‘triad of impairment’.

It is almost impossible to determine how many individuals worldwide have an ASD; however, Boshkoff Johnson (2014) estimates it to be near to 70 million people, with approximately 700 000 people in England alone known to have autism—equivalent to more than 1% of the population (Matson and Kozolowski, 2011; Brugha et al, 2012). To put this in context, this is a similar figure to the number of people currently living with dementia (850 000 people) (DH, 2014; Harwood and McCulloch, 2014). However, not all individuals with ASD have been provided with a diagnosis, let alone sought an explanation for their related complexity or difference.

Brief history of ASD

The oldest known cases of autism are recorded as early as the 12th century, with one of the disciples of Francis of Assisi, and again at the end of the 18th century with Victor of Aveynon (Frith, 1991). Swiss psychiatrist Eugan Bleuler was the first to use the term ‘autism’, in approximately 1911, to refer to a group of symptoms that he observed ‘in reality’ of those with schizophrenia turning away from the reality of the external world (Bleuler, 1951; Weintraub, 2013; Mercati and Chaste, 2015). Both Leo Kanner and Hans Asperger are best known for their work in the 1940s using the terms autism and Asperger's to identify children with emotional/social problems. Kanner observed the withdrawn behaviour of several children he studied, but disproved the link to Bleuler's schizophrenia theory (Fischback, 2007). Autism and schizophrenia remained linked until the 1960s, when the medical professions began to have a separate understanding of autism and children (Weintraub, 2013).

Kanner published his seminal texts in 1943 in the USA, ahead of Asperger who published his in 1944 in Austria; owing to this, Kanner's work has taken precedence. The men had neither met nor discussed their findings prior to publication, but this has not halted speculation of academic integrity on Asperger's part (Weintraub, 2013; Fellowes, 2015). Global events during that period may have also influenced delay in Asperger's work being accepted; nonetheless, Asperger's work has become more widely attributed to ASD over recent years, mainly owing to the evidence of Wing in the 1980s (Wing, 1980; 1981; Wing and Attwood 1987; Frith, 1991; Wing and Potter, 2002).

The ASD infant's psychic development was initially thought to depend on the biological mother's degree of empathy and attunement to her infant (Fischback, 2007). Gardner (2000) states that Bettelheim, an influential theorist of psychoanalytic interpretations of autism, espoused long periods of child and parent separation to rectify this. These mothers were termed ‘refrigerator mothers’ and the autism was the child's response to this ‘psycho-toxic’ relationship (Fischback, 2007; D'Astous et al, 2014: 6). Kanner (1973: 61) described the parents of children with autism as ‘interpersonally distant’. More recently, Sousa (2011) asserted that it is actually the mothers who are the ones who put their lives on hold to focus on trying to get the appropriate help and resources required to raise and support their children. Sousa (2011 220) describes these mothers as ‘warrior heroes’. In the lead author's opinion, it is perhaps more pertinent for these parents to be considered ‘worrier’ heroes who fight against the odds to strive for support and resources to support ‘living with autism’. Reassuringly, there is research to show no link between the parents of autistic children and matched comparison children on personality measures (Allen et al, 1971). There remain some professionals who adhere to a more traditional belief of mother–child attachment dysfunction in causing autism (Roser, 1996), which is perhaps why some families are labelled with their child's behaviour being due to poor parenting skills.

In the 1960–70s it was thought that ASD could be cured through treatments including medication such as lysergic acid diethylamide (LSD), electric shock and behavioural change techniques relying on pain and punishment. This progressed to taking a more environmental-controlled behavioural therapy approach in the 1980–90s, which has progressed to current practices of behavioural and language therapies (Weintraub, 2013). The amount of support required is based on individual needs, with some families requiring little or intermittent support, whereas others require substantial daily involvement (Smith Myles and Southwick, 2005; Anderson et al, 2012; Attwood, 2013; D'Astous et al, 2014).

Figure 2 highlights some of the ‘differences’ attributed to Asperger's syndrome. Interwoven through these processes are the carers and the support needs of these mechanisms. The more support provided for the holistic environment, the greater the reduction of stress for all involved.

Living with ‘our’ autism: carer perspective

‘Living with autism’ touches the lives of many people, not just the individual diagnosed with an ASD. For many families journeying through a pregnancy, the idea of a child with ASD is far from their minds, especially for those families who had never had a pre-encounter with someone with autism. The road to a diagnosis of an ASD can be a laborious and painful one, often battling many systems and professionals with conflicting—and occasionally judgemental—approaches. The realisation that this is a lifelong condition, not something that the child will grow out of, is enormous. The value of a friendly face, empathetic listening skills, non-judgemental comments and a willing signposter is invaluable to get the most appropriate support for the whole family.

The rollercoaster of emotions linked to the lead author's own experiences has been both crushing and exhilarating at the same time. My personal conflicts with societal expectations led to an inner chaos and perceived initial failure as a parent, which was—and remains—painful. I have moved from feeling the need to apologise every time I move in social circles, feeling huge levels of embarrassment because our situation did not mirror that of typical family groups, and grieving my expectations of what my life was planned to be like (including my child being the next world leader or brain surgeon), to being someone loud and proud who celebrates difference. This is our ‘normal’. Living with ASD has been the best teacher for my personal development and I would not change it for the world. I will have accomplished my role as a parent if I can achieve my part in ensuring that ‘all adults with autism are able to live fulfilling and rewarding lives within a society that accepts and understands them’ (DH, 2014: 4).

There is a dichotomy with being a parent and carer of a child with ASD being a health professional and educator (Diagram 1). Academics and professionals implement theoretical concepts and research to offer best-practice support, which is sometimes to the benefit of those living with autism. Literature searches highlight research and evidence linked to risks leading to ASD and the testing to elicit a diagnosis, which is easily accessible by the general public. The findings linking ASD to pregnancy and birth can lead to mothers feeling guilty, with studies on subjects such as intrapartum pethidine use (Johnson et al, 2014), mental wellbeing and use of antidepressants during pregnancy (Croen et al, 2011; Clements et al, 2015) and the measles–mumps–rubella (MMR) vaccination (Wakefield et al, 1998; Peacock and Yeargin-Allsopp, 2009). The Wakefield et al (1998) paper was later retracted after it caused a global health crisis and an investigation identified the research as fraudulent (Deer, 2011).

Living with ‘our’ autism: ASD perspective

Life can be confusing, frightening and lack meaning, along with feelings of isolation and experiences of hypersensitivity. Those on the autistic spectrum have written much about viewing the world from a different perspective and finding ways to fit in after crash-landing on planet Earth (Muggleton, 2011; Cook O'Toole and Bojanowski, 2013; Grandin and Panek, 2014; Grant, 2015). ASD is different for every individual and in this iteration a key component for ‘our’ ASD is ‘feeling disconnected’ while being ‘firmly a part of the world’. More positively, Volkmar et al (2000: 262) refer to those with Asperger's as ‘little professors’ as each individual expresses great insight to their part in the world. Figure 3 highlights the descriptive experience provided by ‘our’ person with an ASD, complete with an explanation to glean an insight into his world.

Introducing multi-professional students to ASD

The powerful voice of the founders of the NAS ultimately led to the development of the Autism Act 2009. The Act set out to make provision to meet the needs of adults with ASD. The first ever strategy for adults with autism in England was published in 2010 (DH, 2010) with a commitment to review this strategy 3 years later. The Government requested feedback from adults with autism, parents, carers and professionals about how well the 2010 strategy had been implemented. The updated strategy, Think Autism (DH, 2014), maintains that all existing recommendations and duties from the 2010 strategy continue to apply to local authorities and NHS bodies (Figure 4).

Following the Autism Act 2009 and subsequent publications, the University of Southampton's Faculty of Health Sciences reviewed its curricula to enhance and harmonise its learning resources in relation to ASD. A task and development group was convened to consider a resource-effective aid to ensure that a minimum of 1000 health and social care students per year developed their knowledge and understanding of those whom are identified with ASD. An online interactive e-learning package was devised for individual students to access at a time convenient to their learning needs and placement activities. This resource incorporates reading material, quizzes checking self-knowledge, links to external resources, video links and hearing those ‘living with autism’. The package was co-designed and developed by users with autism, carers and a multi-professional team. The interactive e-learning approach aims to provide learners with the theoretical opportunity to encounter, explore and understand working with individuals with autism across the age continuum, in an array of environments.

In terms of the impact for individuals with ASD, it is hoped that increasing student awareness will reduce the likelihood of scenarios such as the abuse at Winterbourne View (DH, 2012) reoccurring without challenge. Enhancing the sharing of good practice and developing students' lifelong learning while also upskilling the workforce could also be utilised to foster a greater understanding of the Equality Act 2010. It is recognised that students may use the e-learning package as a tool for self-diagnosis through development of their own self-awareness. This is not an intended outcome, however; signposting to appropriate support and counselling has been factored in.

Implications for midwifery practice

It has previously been assumed that there are more males than females with a diagnosed ASD, with a ratio of approximately one female to four males (Frazier et al, 2014; DeWeert, 2014). It is likely, however, that this ratio is inaccurate, with females being under-reported owing to the consideration that females are better at compensating for ASD (Dworzynski et al, 2012; Jacquemont et al, 2014). Grant (2015) states that this is probably because behaviours akin to an ASD are typically attributed to being ‘just what girls do’; for example, an obsession with princesses and pink might be a stereotype of a female behaviour, rather than a focus linked to ASD. A non-diagnosis has the potential to impact on the care and compassion experienced by users of maternity services. Grant (2015) articulates her experiences of pregnancy and her interaction with health care, and explains how women using maternity services struggle with the lack of adjustments made on behalf of the staff. With the eclectic mix of maternity service provision, not all women are afforded continuity of carer through their antenatal, intrapartum and postpartum experiences, which may impact on the support and reassurance offered. Achieving a smooth transition to parenthood is a challenge for any new parent (Nazarinia Roy et al, 2014); for the person with an ASD, there are added challenges linked with the changes in emotions and not always knowing how to control them.

Midwives are generally comfortable within their known and familiar environments, but for the woman with ASD, the loud obtrusive sounds, the buzz of the lighting and electrical equipment, the gentle touch that may be excruciatingly painful or distressing, and the tone of voices reflecting potentially how the midwife's shift is progressing, may lead to instant agitation, fear and perceived unacceptable behaviours. Entering an unfamiliar environment, which is out of a recognised routine and without a familiar face—be it a carer, parent, partner or known professional—may lead to a ‘meltdown’ (Figure 5) (Attwood, 2013; Colvin and Sheehan, 2014). Identifying the trigger or triggers that can lead to a meltdown will minimise the potential for distress and the ensuing related behaviours (Baron-Cohen, 2000; Smith Myles and Southwick, 2005; Grandin and Panek, 2014).

Midwives have guidelines, processes and an evidence-base to support women through their choices, but may not always consider how this is received by the person with ASD. It could be perceived that if a woman and/or her partner does not fit the ‘neurotypical’ mould, s/he is labelled negatively, rather than being seen as an individual. This could then instigate a cascade of events leading to safeguarding; however, when considering the Mental Capacity Act 2005, all individuals should be supported in the decisions that they consider best fit their own circumstances. The NAS (2015) has devised ‘My hospital passport’ for the individual with ASD to complete prior to entering the health-care arena. The purpose of this tool is to assist those with ASD to communicate their needs to health professionals. This should lead to a consistent approach to supporting the individual through their exposure to health care, and raise awareness of ASD within maternity care.

With the increasing numbers of women with a known ASD (Dworzynski et al, 2012), midwives may need to adapt their behaviours, environments and care packages, and support women through their transition to parenthood.

Conclusion

The University of Southampton's online interactive e-learning package is currently in its first iteration. By integrating knowledge and understanding of ASD throughout pre-registration midwifery education, it is hoped that midwives and other health professionals will develop a greater awareness of supporting women and their families who are living with autism through their pregnancy, birth and as a new family. The package will be evaluated after a year of integration to the pre-registration students. The second phase aims to offer the package to all staff in the Faculty of Health Sciences, along with post-registration students, to further enhance the spread of knowledge and understanding.

Using myriad patient and carer voices, health professionals can begin to appreciate the unique worlds of those living with autism. The challenge is to experience the world from a different perspective, embrace it and become understanding and more tolerant of difference and diversity. Every individual is unique.

Key Points