Significant barriers to caring for autistic women in inpatient facilities

Although learning disability registered nurses (RNLDs) are well-placed to provide support for autistic women in inpatient settings, there are significant barriers to effective practise, finds a study published in Nursing Times.

The qualitative study considered the experiences of RNLDS working with an autistic adult woman on a secure ward. This could be combined with a mental health diagnosis but not a learning disability.

Five people were recruited for the study and data was gathered via a short-answer questionnaire, followed by a one-hour semi-structured interview.

Gender differences in autism presentation identified by all participants

The researchers conducting the study found that 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.

Every participant also observed gender difference in behaviours for patients with autism, while women were typically better able to mask their autistic traits, men were generally less able to do so and demonstrated more physical expressions of emotions, such as violence towards others.

The participants identified high levels of anxiety among autistic women in inpatient settings, with the environment in the hospital (particularly a lack of routine) recognised as a contributing factor to increased anxiety levels.

Some autistic females on mental health wards developed harmful coping strategies, such as self-harm, self-medicating and aggression. These behaviours were also noted to sometimes manifest before diagnosis.

Better training identified as key factor in improving quality of care

The participants identified training as a key factor to developing understanding and confidence, yet four out of five participants had only received basic mandatory training and none had received any information about gender differences during this 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.

Even so, all the 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.

Although the RNLDs felt well-placed to care for autistic women, they said on mental health wards, they were often the only RNLD present and being heard was sometimes a challenge. Several participants suggested that having autism-specific wards could produce more positive outcomes.

The participants discussed not being able to be as present as they would like and were often stretched too thinly to be able to care for people in the way they had been trained. Despite this, they all reported having positive impacts across teams with those they were working with.

Improving quality of care for autistic women

As a result of the findings, the study’s authors, Holly Parry, clinical quality delivery manager, NHS South, Central and West Commissioning Unit and Steve Mee, retired associate professor, University of Cumbria, are calling for the implementation of various recommendations, including:

• Autism-specific training for staff working in mental health settings;
• The continued investment in learning disability nursing to improve recruitment, retention and training;
• The input of specialist knowledge that supports the service in a person-centred and holistic manner;
• For health services to work with local commissioning groups to ensure that service gaps are appropriately identified and filled, and diagnostic pathways and links to community support in secure units are also made clear; and
• More research into the understanding of general differences across the spectrum and lifespan, and to better understand the presentation and impact of mental health conditions as a dual diagnosis with autism.

They also suggest that RNLDs are creative and willing to adapt their care to a person’s needs, are confident, curious and ask questions, are willing to work in partnerships with patients, families, wider services and colleagues, and expand their knowledge and seek further training.

The authors acknowledge that the study was small-scale and a larger group of participants will be required for a more comprehensive understanding. Nevertheless, the findings provide extremely useful indications for what needs to be done to improve the quality of care of autistic women in inpatient facilities.

Lauren Nicolle

Lauren is a qualified journalist who writes primarily across the health and social care sectors. She is passionate about exposing the injustices faced by people with a learning disability, with a particular focus on equal access to healthcare.

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