I have chosen to focus this reflection on a woman who had been diagnosed at a young age with autism. Ann* was a 19 year old primigravida who was admitted to the antenatal ward in the latent phase of labour. Ann had been diagnosed with autism when she was 3 years old, and experienced significant communication challenges, as well as difficulties with social interaction.
In order to provide holistic care, it is important to consider the additional needs a woman with autism may have. Mencap's (2007) report ‘Death by Indifference’, highlighted the inequalities that people with learning disabilities, such as autism, encounter within the healthcare service. The report found that 37% of deaths of people with learning difficulties were preventable (Mencap, 2007). In 2013, Confidential Enquiry into Premature Deaths of People with Learning Disabilities (CIPOLD) investigated the premature deaths of people with learning disabilities. The enquiry found that a lack of reasonable adjustments to facilitate the care of people with learning disabilities contributed to these deaths. It is for this reason that I decided to reflect on Ann's care. Furthermore, the Nursing and Midwifery Council's (NMC) (2008)The Code: Standards of conduct, performance and ethics for nurses and midwives states: ‘you must provide a high standard of practice and care at all times’. Therefore, by reflecting on Ann's care I aim to be able to provide a better standard of care to other women with autism.
Reflection is an important part of practice, as it enables an individual to bring together theory and application, as well taking lessons from an event to be able to improve practice in the future (McBrien, 2007). As part of this reflection, I will explore the midwifery care that Ann received during her admission to the antenatal ward, comparing this to guidelines and research into autism. I will use Driscoll's (2007) ‘What?’ reflective cycle comprising three stages. The first stage of the cycle is ‘What?’, which contains a description of the event. Second is ‘So What?’, an analysis of the event. This stage identifies what can be learnt from the event. The cycle finishes with ‘Now What?’, a stage that details the proposed actions from the event, and discusses what implications the reflection will have on my personal professional practice (Driscoll, 2007).
While this is a controversial case and issues of capacity and consent would be a consideration of her care, in Ann's case, this is beyond the scope of this article and therefore will not be addressed. Ann's ability to make decisions and parent the child will also not be explored for the same reason. All names have been changed within this reflection, in line with The Code (NMC, 2008).
What?
Ann was a 19 year old primigradvida, at 39 weeks and 4 days gestation when she arrived on central delivery suite. She gave a history of strong contractions arriving regularly every 5 minutes; she had no vaginal loss and felt a normal pattern of fetal movements. Her baseline observations were normal and she was under midwifery-led care. Ann's cervix was 2 cm dilated and was considered to be in latent phase—as active labour is not considered to start until the cervix is 4 cm dilated—with strong, frequent, regular contractions (National Institute for Health and Care Excellence (NICE), 2007). As Ann did not wish to go home, she was admitted to the antenatal ward.
Ann's autism made unknown situations exceptionally difficult. She found it challenging to communicate with people she did not know, although she was able to communicate well with people who were familiar to her, such as her mother. Ann had a particular fear of unfamiliar men. She also disliked the left-hand side of her body being touched and would wave her fingers in front of her eyes, repetitively. She was hypersensitive; finding the hospital environment, with its bright lights, strange smells and unexpected noises difficult, as well as her contractions very painful.
So what?
Autism can be defined as a lifelong developmental disability that affects how a person communicates and relates with others (The National Autistic Society, 2013). It is a spectrum disorder, although there may be some common traits between people with autism, each person's condition will affect them in different ways (National Autistic Society (NAS), 2013a): one person with autism may have mild symptoms, such as a preference to avoid eye contact, whereas another person's symptoms may be more severe and they may not be able to communicate at all.
The 2011 census showed that in the UK, 1 in 100 children currently have autism (Office for National Statistics, 2011). There is no known cause of autism (National Institute of Neurological Disorders and Stroke (NINDS), 2014). However, it was once thought that poor parenting caused autism, and Bettelheim (1967) even advocated removing the children from their parents as a form of treatment. The current biological theory of autism is supported by a growing amount of research which suggests that autism is caused by abnormalities in the brain caused by a mixture of genetic and biological factors (Freitag, 2007).
There is significant evidence to show a genetic link for autism (Volkmar and Pauls, 2003). A comprehensive study found that in 80% of twin pairs, where one twin had been diagnosed with autism, both twins had autism. The study also reported that other blood relatives of an individual with autism were significantly more likely to also have autism (Rosenberg et al, 2009).
Post-mortem examinations of autistic children have shown an increased cell density in the brain (Courchesne et al, 2011). In the ‘normal’ development of the brain, cells proliferate, and then ‘die back’. Thus there is a theory that autism is caused by a failure to ‘switch off’ cell proliferation, rather than to ‘switch on’, causing developmental arrest (Courchesne and Pierce, 2005).
A further study found that the prefrontal cortex of an autistic brain is around 70% larger than in a neuro-typical brain (Courchesne et al, 2011). Language and communication, as well as behaviours such as social ability—typically areas individuals with autism find difficult—is thought to be based in the prefrontal cortex. As cortical neurons are not generated after birth, this suggests a prenatal cause for autism, although further research is needed into this area (Courchesne et al, 2011).
Many people assume that those with a learning disability such as autism are unintelligent and therefore unable to understand language, but studies have shown this to not be true (Charman et al, 2011). This preconception of women can lead to adverse reactions when they announce their pregnancy, with some care providers reporting feelings of shock, disbelief or revulsion. Such reactions may well affect the care they provide these women (McKay-Moffat, 2007). Little research has been carried out on the experiences of women with autism during pregnancy and childbirth; however, McGaw and Sturmey (1993) identified that mothers with learning difficulties do not tend to receive adequate antenatal care, particularly highlighting a lack of support and communication from health professionals. I feel this emphasises the need for health professionals to reflect on their own personal feelings about a woman with autism being pregnant.
Personally, I am comfortable with a woman with autism being pregnant; however, I was aware that not all everybody held the same viewpoint as me. It was for this reason that I requested to work with Ann. Assigning a midwife who is not so accepting to work with a women with autism may have caused Ann to experience a different quality of care.
A supportive midwife–mother relationship is vital for a woman to have a positive experience. A trusting relationship can strengthen the woman's self-esteem and give her security in the birthing process (Lundgren and Berg, 2007). It was particularly important to create this relationship with Ann, as it was essential she knew her needs would be respected in order to feel secure. When stressed or frightened, the body produces adrenaline which negates the levels of oxytocin, the hormone that stimulates uterine contractions (Gaskin, 2003). Fear can have a detrimental effect on labour, often manifested in the slowing down or arrest of labour (Bak, 2003). Therefore, being in a state of fear would have had a negative effect on Ann's overall birth experience. I felt that the support I was able to give Ann during her admission meant that this did not happen.
The Autism Treatment Centre of America (2001) advocate bonding through acceptance, reinforcing the idea that the attitude of the midwife caring for the woman is highly important in providing care. To do this, the Autism Treatment Centre of America promote being user-friendly, by ensuring that the midwife does not do anything to the woman that they know the woman would not like and adapting care to meet the needs of the woman. This coincides with the care Ann was given. When looking after Ann, I reassured her that it would just be my mentor and myself in her room, and we would always knock prior to entering. We also discussed with other members of staff, such as the cleaner, that Ann has requested that they did not enter the room, thus alleviating her fear of strangers.
‘Autism can be defined as a lifelong developmental disability that affects how a person communicates and relates with others’
Ann's community midwife made her care in the hospital significantly easier by drawing up a comprehensive care plan. This plan enabled Ann's mother to stay with her at all times, including overnight, so Ann would be able to communicate her needs. This care plan was facilitated by the community midwife arranging a meeting with the hospital's maternity in-patient manager and the ward manager, as several things on the care plan were against hospital policy, such as Ann's mother being able to stay with her on the ward.
Ann's care could have improved if the hospital was able to provide continuity of carer, by having Ann's community midwife attend her birth. As Ann was already familiar with her community midwife, this could have prevented the stress felt by having to be cared for by an unfamiliar midwife. Unfortunately, this was not possible due to the workload of the community midwife at that time.
Ann's fear of strangers could have also been alleviated had she decided to go home in early labour. Studies have shown that women are more likely to have positive birth outcomes if they are at home in early labour (National Coordinating Centre for NHS Service Delivery and Organisation (NCCSDO), 2006). This would have ensured she was in a familiar, predictable environment and may have improved her experience. However, due to Ann's hypersensitivity, she found early labour exceptionally painful and therefore chose to be admitted to the antenatal ward in order to receive pharmaceutical pain relief.
Ann's hypersensitivity is thought to be common among the autistic population (Bundy et al, 2002). In order to help Ann cope with being in hospital, we tried to make her environment as low-stimulting as possible. To do this, the light level was lowered and unnecessary equipment was removed from the room. Ann found this useful and I think it is something to consider if caring for a woman who is hypersensitive. Furthermore, Ann did not like some of the natural pain-relieving methods offered, such as massage or a wheat bag, because they caused a sensory overload. It was therefore more suitable for her to use pharmaceutical methods of pain relief.
While Ann was able to successfully communicate in every-day life, Ann found communicating with strangers challenging. Ann also had to deal with being in an unfamiliar environment, as well as being in pain. It would have been beneficial, therefore, if midwives had used a strategy to alleviate her communication challenges. The Picture Exchange Communication System (PECS) was designed to be an augmentative and/or alternative communication system for individuals with autism (Frost and Bondy, 2002). The system involves communicating through the use of specially designed pictures. The individual with autism merely has to point to the picture showing their desired choice rather than finding the words and then vocalising them to people with whom they are unfamiliar. Research shows that PECS can be a useful communication tool for those with little or no functional speech (Sulzer-Azaroff et al, 2009), Ann did not use PECS at home so it was not used. The latent phase of labour is not an appropriate time to be introducing a new communication strategy. Had this strategy been implemented during earlier antenatal care, it may have improved Ann's experience in hospital. It is therefore important to bear this technology in mind as a system that could be used in future if a woman found communicating too challenging.
On reflection, I feel that the decision not to use PECS was the correct one. Instead, I focused on tailoring my own voice and communication towards helping Ann, as this is what she was used to. I made sure that I kept my voice at a normal volume and speed due to Ann's hypersensitivity; I didn't want to raise my voice or make sudden verbalisations which might have been painful for her. I also gave her longer than normal to reply to any questions or conversation, as many people with autism experience an auditory processing delay (Bellis, 2002). I only asked Ann questions that were necessary and I focused on allowing myself to be comfortable in silence in the room. Although Ann's mother often answered for her, I made sure that when I talked, I directed it towards Ann, so she didn't feel left out of the conversation.
Overall, these communication techniques worked well. As time went on, she became more comfortable with my presence in the room, and began to answer my questions directly and verbally communicate her needs. The importance of adapting my own communication skills to suit each woman's needs is therefore something I shall take forward in my own personal practice.
Another aspect of Ann's care that had to be tailored to her individual needs was in relation to her repetitive hand movement (or hand flapping) in front of her face. Such restrictive and repetitious behaviours often become a core indicator to a diagnosis of autism (World Health Organization (WHO), 1990). Ann's mother reported that although this was something she had done a lot when she was younger, it was not something she did often as an adult unless she was stressed or worried. Studies have shown that repetative behaviours, such as hand flapping, increase the amount of endorphins released in the body, which can reduce the sensation of pain felt (Nutrition Health Review, 2005).
Applied Behaviour Analysis (ABA) suggests that undesirable behaviours, such as hand flapping can be untrained through punishment; by taking away items, putting the person in ‘time out’ and, in extreme cases, physical punishments (Lovaas, 1981). It also advocates replacing these behaviours with more desirable behaviours, such as academic skills, through a reward system. It is an approach supported by the NAS (2013b); however, a systematic review of ABA could only offer ‘cautious support’ (Velazquez and Nye, 2011: 73). If hand flapping produces endorphins, it has to be asked why a woman-centred approach would decide to prohibit such useful behaviour. Stopping a woman in her repetitive behaviour could also potentially have negative influences on the midwife-mother relationship.
The Autism Treatment Center of America recommend joining the person in their repetitive behaviours in order to create rapport and then use this bond in order to teach social interaction (Autism Treatment Center of America, 2001). Houghton et al (2013) have shown that using this approach increases social-communicative behaviours in people with autism. The Royal College of Midwives (2011) advocates woman-centred care. In my opinion, although the ABA approach is the recognised therapy option in this country, punishing a woman for behaviour that is reducing her pain levels is not woman-centred. ABA was designed to be used within the home or school environment (Lovaas, 1981) and I do not believe it has a place in maternity care; I would feel very uncomfortable ‘punishing’ a woman for hand flapping. Conversely, I am unsure if joining in with Ann's hand flapping would be practical during maternity care, as the midwife has several other tasks that need to be completed. However, the Autism Treatment Center of America's philosophy is that behaviours such as hand flapping should be treated with acceptance and an understanding that the repetative behaviour is useful to the individual. This attitude can therefore be combined with the other tasks that the midwife performs. It would also be useful for the midwife to make adaptations to the care given so Ann could continue with her repetitive behaviours. An example of this would be to not place a cannula in the woman's wrist, but consider placing it elsewhere instead, such as the cubital fossa.
Now what?
This reflective cycle highlighted the importance of the midwife's attitude while providing care. I shall therefore aim to maintain a non-judgemental and accepting attitude across all aspects of my practice, not just for women with autism.
I have been surprised at the lack of guidelines for looking after women with autism, both on a local and national level. However, this lack of guidelines could point to the emphasis on the need for individualised care. Tailoring your care to the needs of each woman is very important in providing a good standard of care. This reflection has also shown how a good antenatal assessment of these needs, together with a good care plan can both significantly improve a woman's experiences in the hospital and make her admission process smoother.