Nurses weigh in on working with adult female patients

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Autism-specific services are limited, so people diagnosed with autism are often referred to either learning disability or mental health services. In these services, learning disability registered nurses are often seen as best placed to provide support. The mental health of people with autism often deteriorates and women in particular can experience inappropriate treatment pathways; they are regularly misdiagnosed and/or diagnosed later in life. In this article, we explore the experiences of five learning disability registered nurses working with female adults living with autism in secure inpatient services. We have made recommendations to review and improve access to training, increase numbers of learning disability registered nurses, review ward processes, and to expand community- and autism-specific services.

Until recently, there was a belief that autism had a significantly higher incidence in males because this was where Kanner and Asperger, who identified the condition in the 1940s, focused their study and diagnostic tool (Attwood, 2007). However, it is now widely accepted that females can often mask their traits; this has been described as “camouflaging” (Attwood, 2007). The consequence of camouflaging is that autism is often missed. Acceptance of this new knowledge has resulted in a corresponding recent surge in referrals for females with autism. In 2010, Roth described a male:female ratio of 10:1; more recently, the National Autistic Society has suggested a ratio of 3:1.

Although it is now more widely recognised that autism has a higher incidence in women than originally thought, the lack of research into the needs of females with autism has a negative impact on their care. This lack of knowledge, along with consequent gaps in training, leads to deficiencies in diagnosis and support. Many women are misdiagnosed or remain undiagnosed, so they are vulnerable to deterioration of their mental health as well as inappropriate treatment pathways, such as admission to secure mental health wards (All Party Parliamentary Group on Autism, 2019).

In its 2020 Out of Sight – Who Cares report, the Care Quality Commission (CQC) found an increase in admissions to secure hospitals for people with autism, with many experiencing much longer lengths of stay than planned because of further deterioration.

Scrutiny on the impact that secure services have on patients is growing after several reports of inappropriate care and treatment. Serious service failure has been reported in recent years, including in television programmes such as BBC’s Panorama, which showed abuse at Winterbourne View in 2009 and at Whorlton Hall in 2019. Key areas of concern include:

Lack of community provision;
Sending people out of area;
Cuts to services;
Lack of training and understanding;
Cultures of abuse (CQC, 2020).
Greater public awareness has led to:

A rise in the reporting of poor care and treatment;
An increase in referrals;
An increase in interest in the lived experiences of people living with autism;
A greater understanding of the experiences of women with autism.
If the mental health of a woman with autism deteriorates to the point that she is seen as a risk to herself or others, she may be detained (sectioned) under the Mental Health Act. To be sectioned, a person has to be deemed to be at risk to themselves or others and at risk of further health deterioration, thereby requiring high levels of monitoring (Mind, 2020). Once assessed, someone may need to remain under section to receive the recommended treatment before being discharged back to the community (Mind, 2020).

Learning disability registered nurses (RNLDs) are seen as key players in bridging the knowledge gap to support people with autism (Department of Health (DH), 2014; DH, 2001). The aim of this article is to explore the experiences of RNLDs in supporting women diagnosed with autism who are detained on a secure ward. Focusing on females living with autism, we consider recent literature exploring gender differences and how this fits with RNLDs’ observations in their practice.

A systematic review highlighted the subtleties of how women experience autism differently from men, particularly in childhood (Lai et al, 2017; Lai et al, 2011). This can lead to inappropriate diagnoses and treatment pathways and, in more extreme circumstances, admission to mental health wards (Markham, 2019; Kanfiszer et al, 2017; Bargiela et al, 2016). Evidence has also shown a lack of specific services for both genders, with growing evidence that women are suffering from mental health deterioration without the right identification of need and support (Barkham et al, 2013).

The systematic review suggested that RNLDs are central to bridging the knowledge and service gaps, taking on the role in the multidisciplinary team to drive holistic treatment pathways across many services; however, there is no research to explore how true this is (Evans, 2020). There are also growing concerns that the number of RNLDs is reducing, with little progress in supporting the training and retention of the workforce (Evans, 2020). To the authors’ knowledge, there is no research exploring RNLD experiences in working on secure wards or working with women with autism.

Every participant had experienced women with autism entering services with either a misdiagnosis or a diagnosis later in life. Everyone agreed that, although there has been a growth in understanding and emphasis on autism, there remained bias in mental health services. All mentioned overshadowing as a barrier, with resulting inappropriate care and treatment pathways:

“There’s almost like an unwillingness to question that it [diagnosis] could be something else or could they have potentially both [autism and a mental health diagnosis].” (Participant 4)

The participants felt that the correct diagnosis not only gave an opportunity for the right treatment pathway to be followed, but also enabled the care team to develop greater understanding and acceptance of women with autism. The strength of the multidisciplinary team was seen as an essential link in getting the diagnosis, care and treatment right:

However, all participants noted there were challenges to the working of multidisciplinary teams, including the use of variable language and opposing opinions.

Each participant observed gender differences in behaviour for clients with autism. Females were typically more vocal and able to mask their traits, reflect, be more empathetic and, when higher functioning, hold a higher level of social skills. Males were typically less skilled in these areas and more physical – they demonstrated more physical expressions of emotions, such as violence towards others. However, one participant noted that these differences were becoming less pronounced:

Participants described high levels of anxiety in women with autism. They all identified the ward environment as a factor in raising anxiety, with a resultant negative impact on behaviour. They noted the importance of routine to their clients but reported that this was difficult to implement on a ward.

It was also noted that females on mental health wards can develop harmful coping strategies, such as self-harm, self-medicating and aggression:

These behaviours could also manifest before diagnosis.

One participant added that it is also good to be mindful of hormonal changes in women and how this might affect an individual’s mood and presentation.

Training was identified as a key factor in developing understanding and confidence. Four of the five participants had received basic mandatory training, but nothing more. Two people had independently sought further study. None of the participants had received information about gender differences during training.

Participants stressed the importance of keeping up to date with good-quality training, but indicated that the time pressures of increased caseloads made this a low priority. They also questioned the quality of training, with the suggestion that it needed to be more interesting and person centred:

“I think we all should have more to do with people, live and breathe autism, you know, who have autism. I think we should be taught by people who have autism more. I think there’s a lot of people out there who have autism that, that would be very good teachers and I think, you know, there’s a lot of books out there, aren’t there about autism, you know, but it’s their autism, it’s not everybody’s autism is it?” (Participant 2)

All participants felt aware and skilled in their practice, believing they could identify and support people with autism. Each stated that they could see past a diagnosis or label and identify the person’s needs with a holistic and creative perspective:

However, they also stated that, on mental health wards, they were often the only RNLD and being heard was a challenge.

Two participants discussed the negative impact of hospitals and several participants discussed whether having more specific wards would be a positive outcome:

”That’s really hard and that battle between, kind of, working out where someone gets the support between mental health and learning disability and if there’s no autism-specific place, where’s that expertise and understanding coming from?” (Participant 4)

The interviews highlighted that, despite guidance and best efforts, practice varies depending on time pressures and workload, as well as the strength of the multidisciplinary team, to ensure diagnosis, care and treatment pathways are appropriate, safe and effective, as recommended by the CQC (2020). It is important to be mindful of the challenges women, in particular, face in light of significant similarities in presentations and coping strategies related to mental health and autism, such as self-harm. Consideration also needs to be given to the high correlation of mental health conditions for people with autism. If dual diagnosed, both will need to be supported, making care and treatment complex and requiring a high level of partnership working.

With the clear need to work across services in a partnership approach, RNLDs should, in theory, be well placed to bridge the gap (DH, 2014; DH, 2001). Autism is understood to be a personal and individualised experience (Attwood, 2007), and the adaptive, collaborative and creative approaches support providing person-centred care and treatment. The participants believed their training provided enough skill to do this, but identified the importance of updating their knowledge.

In addition, partnership working enabling them to share this knowledge and make sure diagnoses were challenged, and care approaches that were correct and consistent were used, came with challenges. This was particularly prevalent on the mental health wards where participants reported structured, inflexible systems, time restraints, task-focused cultures, lack of multidisciplinary team support and inappropriate environments.

There has been a depletion in numbers of RNLDs and national support is needed to increase numbers (Royal College of Nursing, 2021). Participants discussed not being able to be as present as they liked and being stretched too thinly in their daily work to be able to care for people in the way they have been trained.

Recommendations for practice
Autism-specific training should be provided for staff working in mental health settings. This was recognised as a national problem after Ritchie’s (2020) Oliver McGowan review. Robust new training strategies have been developed and it is important they are regularly reviewed.

Skill mix is essential in providing high-quality care and multidisciplinary team discussions (Care Quality Commission (CQC), 2020; Nursing and Midwifery Council (NMC), 2018). Considering the depletion of learning disability registered nurses nationwide, it is essential that Health Education England’s (2020) All-England Plan for Learning Disability Nursing continues its investment and drive to improve recruitment, retention and training

Multidisciplinary teams need to include the input of specialist knowledge. They should follow the recommendations set out by the National Institute for Health and Care Excellence in 2014 and the NMC in 2018 to support the service in a person-centred and holistic manner, as advised by the CQC’s (2020) report, Out of Sight – Who Cares?

Community services should be reviewed and health services should work with local commissioning groups to ensure that service gaps are appropriately identified and filled. Diagnostic pathways and links to community support in secure units should also be made clear
Most research focuses on people with autism who are high functioning. More research is recommended to develop the understanding of gender differences across the spectrum and lifespan, and to better understand the presentation and impact of mental health conditions as a dual diagnosis with autism

Limitations
This was a small-scale study and explored personal observations and views. A larger group of participants is required for a more comprehensive understanding. The study is limited to RNLD experience of adult women in a secure ward and more research focusing on wider demographics is needed.