Mental Health Inpatients with autistic spectrum conditions, their desire and fear of discharge - a phenomenological study

Dissertation submitted by Dr Paul Maloret, Principal Lecturer in Learning Disability Studies, University of Hertfordshire

Abstract & Keywords

Background

This qualitative study explored how mental health inpatients with autistic spectrum conditions experience and cope with discharge when admitted to an acute mental health inpatient facility in the UK. Anxiety is a common characteristic for people who live with autistic spectrum conditions and whilst studies on anxiety in this population are commonplace and case studies correlate anxiety with mental health service experience, little is known about the actual triggers of anxiety and its manifestations, particularly during the discharge process. Despite growing acknowledgement that admission to acute mental health facilities should be a last resort, reported figures on admissions continue to rise (NICE, 2014).

Method

During 2016-2019 audio-recorded semi-structured interviews captured the experiences of 20 adults from the East of England who were former psychiatric inpatients with an established diagnosis of autistic spectrum condition.

Results

Interpretative phenomenological data analysis enabled the identification of broad themes which explained in rich detail, participant reflections regarding the situations and events within the acute care mental health facility that triggered their anxiety, behavioural manifestations of anxiety and, responses to the discussion of discharge. It was then possible to establish the broad behavioural patterns that could be associated with their anxiety i.e. isolating themselves from others, including patients and staff, ceasing to eat and sleep adequately and all too often self-harming or exhibiting aggressive and violent behaviours.

Conclusions

The anxiety caused by the discussion of the discharge process appears to be overlooked by mental health practitioners so attention to anxiety inducing dialogue is needed when planning discharge from acute care mental health services and research is required to clearly understand the experiences of this group of vulnerable people.

Keywords

Autistic spectrum conditions, communication, anxiety, acute mental health admission, discharge.

Summary

The purpose of this study was to understand the stress and anxiety experienced by in-patients with ASC specifically in relation to being discharged back into the community and to understand the manifestations of their anxiety and coping strategies.

The themes emerging from this study are common in autistic populations and many fit with what is understood of the core features of ASC. However, this study provides an in-depth analysis and considered interpretation to arrive at a greater understanding of the significant impact for the patients themselves.

Most highlighted issues that impact upon their mental well-being which could be perceived as small, even trivial. Nevertheless, despite the perceived scale of the issue, this can prove to be a significant problem for them.

There is no doubt that some of these behaviours can be particularly challenging to healthcare professionals, but with greater insight as to the root cause, practitioner responses could be more sensitive and therapeutic specifically when entering into discussions of discharge planning and the inevitability of discharge.

Relevance statement

A significant number of people with autistic spectrum conditions are finding themselves in mental health inpatient units within the UK. It is largely the opinion of the participants of this study that the services in which they find themselves are ill-equipped to deal with their different needs and frontline staff in mental health units could learn from mistakes made in the past and gain greater awareness and knowledge of how the core features of autism coexists with mental health issues.

Introduction

People with Autistic Spectrum Conditions (ASC) are particularly vulnerable to mental health problems such as anxiety and depression, especially in late adolescence and early adult life. It is well documented that admission to hospitals to meet the mental health needs for those with ASC should be a last resort, but according to the National Autistic Society (NAS) (2018) numbers of autistic inpatients with and without a learning disability have steadily increased from 2015, at a time when the transforming care programme (NHS England, 2015) had targeted a 35% reduction within that three-year period. Howlin (2005) notes that the mere thought of an inpatient admission for a person with ASC can cause the severity of their mental health condition to escalate very quickly, the desire for sameness can be seriously compromised when someone with ASC is placed in unfamiliar surroundings. On this basis there is clear need to consider more closely what exactly is happening at different times of the admission to hospital encounter and how best to minimise the stress experienced. This paper explores how patients with ASC experience and cope with their anxiety during the discharge process of an inpatient mental health setting.

It is crucial to understand the aetiology of anxiety within ASC populations and a great deal of anxiety experienced by those with ASC can be linked to the core features of the condition itself. A meta-analysis undertaken by Van Steensel and Bogels (2012) suggested 40% of young people with ASC meet the criteria for an anxiety disorder and Magiati et al (2016) suggest that people with greater ASC symptomatology i.e. more effected by the core features of autism, are more vulnerable to anxiety related difficulties. The Intolerance of Uncertainty (IU) is defined as a ‘broad dispositional risk factor for the development and maintenance of clinically significant anxiety (Carleton 2012). IU is regarded as one of the main driving forces behind the high levels of anxiety experienced by this group (Maisel et al, 2016; Boulter et al 2014; Wigham et al 2015). Lidstone et al (2014) suggest that repetitive motor behaviours and insistence on sameness behaviours can be seen as a marker for anxiety which can become noticeably more frequent with increased intensity when anxiety heightens. Equally, they can act as a buffer to alleviate distress and a mechanism for dealing with anxiety. Rogers et al (2012) investigated the behaviours of children diagnosed with ASC, whereby children with higher anxiety had more repetitive behaviours than those without anxiety. Agitation, aggressive and self-harming behaviours can also be a marker and an alleviator of anxiety within ASC populations (Rodgers et al, 2012; Lidstone et al, 2014). Additionally, emotional responses or confusion around experienced by the person with ASC and their attempts to read and understand other people’s emotional responses, alexithymia i.e. difficulty in identifying and describing internal emotional states, also play a considerable part (Maisel et al, 2016, Boulter et al 2014).

Anxiety in the context of this study can manifest itself in many ways.  There are times when it is acutely obvious that somebody is experiencing a progressively anxious state of mind, by their physical appearance or by their erratic behaviour. However, many people with autism have difficulties comprehending when anxiety is in existence, despite how obvious it might be to others around them. For those who do recognise when they are anxious, coping strategies are employed to try to reduce or pre-empt anxiety provoking situations.

Service provision for this client group has historically been problematic and at times dangerously elusive. The Autism Strategy (DH, 2010) demanded higher quality services, particularly for those who experience difficulty accessing services that meet their needs. The report discussed the ability of ‘personalising services’ i.e. making services fit everyone’s needs, not just those people who fit certain criteria. Legislation that supports the mental healthcare needs of people with ASC is still relatively new to the political horizon, but it is beginning to have a gradual impact upon services.

The Autism Act (2009) is a clear indication of the UK endeavour to improve policy and service provision, it specifies that services need to change to accommodate the needs of individuals with autism. In 2009, the Department of Health developed a consultation paper 'A better future: a consultation on a future strategy for adults with autistic spectrum conditions' (2009) which sought to identify salient priorities for individuals with autism which would contribute to the future strategy for change. This was followed by the publication of the document 'Fulfilling and Rewarding Lives: the strategy for adults with autism in England' (DoH, 2010) which details the need for public sector services should work together to meet the needs of adults with autism, including providing necessary training so that individuals with autism are able to access social and healthcare more effectively, including a more definitive pathway to diagnosis. The impact of the strategy can be seen in Hertfordshire as the Hertfordshire County Council’s Asperger’s team are currently dealing with hundreds of referrals from those who previously have not been diagnosed or mis-diagnosed.

Although empirical studies on mental health inpatient hospital admissions do not give details of specific diagnosis and therefore we cannot clearly ascertain how many people with ASC have been admitted to an inpatient unit in the UK, we do know that 2,060 people with learning disabilities and/or ASC were in hospital at the end of June 2020, within the same month 1,165 were admitted and 1,585 were discharged. Many inpatients have been in hospital for a long time and of those in hospital at the end of May 2020, 1,255 (61%) had a total length of stay of over 2 years. At the end of May 2020, around half of inpatients (1,070, 52%) were in a non-secure ward, there were 990 (48%) inpatients in a secure ward. There were more males (1,485) than females (570) in hospital this month (72% were male). Around half of inpatients (51%) have a date planned for them to leave hospital (1,045). 17% of inpatients (345) in hospital travelled less than 10km for care or treatment, whilst approximately 40% of inpatients (820) in hospital travelled over 50km for care or treatment.  The total number of people in contact with mental health services at the end of September 2020 was 1,214,870, and many of these would have an ASC diagnosis without the comorbidity of an intellectual/learning disability (NHS Digital, 2020).

Literature

A literature search was conducted using the following search engines Google Scholar and PubMed and online databases Scopus, PsycINFO and CINAHL. The period searched was 1998 to 2019 and the following search terms were used: mental health, inpatient psychiatry, autism and Autistic Spectrum Conditions with the Boolean operators comprised of AND, OR and NOT. All items were in English and grey literature was gathered from policy documents local service-side material and patient information. (HPFT, 2016, National Development Team for & Inclusion, 2012, Asperger’s team- Outreach).

The literature is clear that admission to hospitals to meet the mental health needs for adults with ASC should be a fall-back position. The experience of such a drastic change of environment can have a traumatic effect on people with ASC equalling that of the mental illness itself. Exercising control over an immediate situation or environment is a critical factor in minimising anxiety for many people with ASC  (Maisel et al, 2016; Boulter et al, 2014; Wigham et al, 2015; Robertson et al, 2018; Spencer et al, 2019). The less in control the person with ASC feels, the more anxiety they will inevitably experience (Lidstone et al, 2014; Robertson et al, 2018, Acker, 2018).People with autism are particularly vulnerable to mental health problems such as anxiety and depression, especially in late adolescence and early adult life. Ghaziuddin et al (1998) found that as much as 65 per cent of their large sample of patients with Asperger syndrome presented with symptoms of psychiatric disorder. More recently Bakken et al (2010) found that 53% of their sample of people with autism and intellectual disabilities suffered from a psychiatric disorder. The high prevalence of psychiatric comorbidity in ASC is largely due to the constant anxious state of mind in which many live their lives. People with ASC will go to great lengths in an attempt to minimise stress and create a very predictable world in which they feel confident and can adequately function. This may well mean isolating themselves for long periods and detaching themselves from the most unpredictable element of society, namely people. This can have a significant impact upon their mental wellbeing, additionally the majority of people with ASC fail to eradicate stress from their lives and over a sustained period this can cause acute and chronic mental illness.

There is clear evidence that people with ASC, with or without a learning disability, are vulnerable to bed shortages.  The allocation of inpatient beds to those who desperately need them is further complicated by long admissions in inpatient units (NHS England, 2015).  An additional impact on these lengthy admissions was highlighted by some participants in this study, who indicated that they deliberately sabotaged discharge plans because of their fear of leaving a place with which they had become familiar and where they had begun to trust the people who cared for them.

The participants in this study were only admitted into mainstream mental health inpatient services, where there appears to be a greater emphasis on getting people back into the community as quickly as possible, whereas within autism and learning disability services there is a managed expectation that the discharge process will take longer normally because of the greater need for support post discharge.  This model of this charge may not suit autistic inpatients (NHS England, 2015). Palucka and Lunsky (2007) further reported the length of hospitalisation within learning disability services ranged from approximately two months to 4 years, with 295 days being the average length of stay. Long lengths of stay were often related to the inability to discharge the patient back to the original primary care provider, who, in over 50% of cases was the family. The majority (71%) of individuals who lived with their families prior to admission were not able to return home and were subsequently placed in group homes or other community-based facilities.

Method

Research aim

The principal research aim was to explore how discharge from a mental health unit impacts on the psychological well-being of adults affected by ASC. The primary aim was to explore commonly reported feelings of anxiety and stress among these patients who, although had struggled initially due to being away from their homes and comfortable and familiar environments within a psychiatric unit, they had settled into the structure and routine of the units and daily experiences has become more predictable and less overwhelming. The secondary aims concerned first, to explore the lived experiences of adults affected by ASC who have been admitted to a mental health unit and now face discussions relating to their pending discharge back into the community, second, to unearth how adults make sense of their thoughts and feelings in relation to having been to being discharged. From these it was possible to determine the issues that heighten stress experience among the participants and their coping strategies.

Design

The study is interested in how patients with ASC experience inpatient episodes related to their planned discharge. Qualitative research in the naturalistic paradigm was influenced by social constructivism (Berger and Luckmann 1966) using a framework of interpretative phenomenological enquiry (Smith 2013). The Heideggarian phenomenological approach (Crowell, 2013) enabled the researcher to get as close as possible to the participants’ perception of events and to understand how people with ASC experience inpatient episodes and spend their time in the unit. Heidegger introduced the notion of the hermeneutic circle, which values our pre-understanding of situations, and ourselves as already in the world (Jack and Wibberley, 2014). To truly understand the thoughts and feelings of a person with ASC, the researcher’s prior knowledge and experience as a learning disabilities nurse and educator was invaluable to the research design, interviewing techniques and inductive data analysis process.

Some studies, (Elwin et al, 2012, Narendorf et al, 2011) involving people with ASC have noted a poor uptake and unwillingness to meet for a face-to-face interview. Additionally, Bakkena et al. (2010) and earlier Jones and Meldal (2001) noted that when conducting semi-structured interviews with this group it was difficult to obtain the richness of data required and the interviews are often short-lived with limited responses to the questions asked. Therefore great care and attention needed to be paid to the interview approach and conditions.

Participants

The national profile of people who need psychiatric inpatient care and who are without intellectual/learning disability is described as a group who are potentially vulnerable to exclusion from health and social care services (Department of Health, 2014). Consistently within this population people live largely independent lives, many live on their own, undertake employment or education opportunities, with support networks albeit family members or advocacy/support groups. Many are not known to health and social care professions until the point at which their mental health becomes a crisis. Generally the autistic diagnosis for this group would be Asperger’s syndrome or high functioning autism. The mental health diagnosis is varied, but most prevalent within this group is an additional diagnosis of generalised anxiety disorder, depression and/or substance misuse. The majority of this group who have an existing diagnosis of ASC are male.

Inclusion criteria

The inclusion criteria comprised participants over the age of 18 at the time of interview, capacity to consent, a minimum two-week inpatient admission period and at the time of the interview they had a confirmed diagnosis of ASC. Additionally, care was taken that the participants were well enough to be interviewed.

Sample and recruitment

Purposive sampling was used to identify former mental health unit patients with an established diagnosis of ASC therefore participants who volunteered into the study were already aware of their diagnosis. Recruitment was evidently easier and felt safer for the participants if the study had been recommended to them by a member the Asperger’s group. A small group of participants were identified using a snowball sampling technique, whereby those initially sampled proposed other participants who had similar experiences and who they thought may be willing and able to share them. During invited sessions with the Autism/Asperger’s Social Group the researcher distributed a Participant Information Sheet explaining the nature of the research. The reaction was positive as a number had experienced mental ill-health and subsequent admission to a unit and they wanted their voice to be heard. A number of individuals wanted to learn more about the study before giving consent so multiple visits by the researcher were welcomed. On initial contact there would be an open discussion about the methodology and the research process and how the information would be used, secondly the semi-structured interview was explained. Following discussion, and answering of questions thinking time was facilitated to consult family and friends. Due to the higher male to female ratio in ASC diagnosis nationally a male-dominated sample was likely.

Although every one of the 20 participants in this study are individual in their presentation, the participant’s profile in Table 1, provides a good representative example of a participants within this study. Any names used in the profile below have been changed to protect the participant’s anonymity.

Ethics

Favourable opinion was granted by the National Research Ethics Service Committee London South East on 26^thAugust 2015 (HSK/PG/NHS/00284). To minimise distress when asked to recall their mental health unit experiences the participants were informed of the type of questions they would be asked in advance, that they may take a break if they wish, especially if they became upset and they could refuse to answer particular questions or withdraw from the study at any time without repercussion. A debrief followed each interview in which the participants were asked their opinion of the process then they were offered a debrief sheet outlining support available to them.

Data collection

Two pilot interviews were conducted on people already known to the interviewer and who met the inclusion criteria, to test the validity and reliability of the interview schedule and approach. Questions were made more accessible for autistic interviewees and greater effort was needed to bring the interviewee back to the questions when they seem to be going off track. Eighteen 60-90 minutes face-to-face digitally recorded semi-structured interviews were conducted over nine months. Interviews were carried out at a location chosen by the interviewee where they would feel comfortable e.g. their own home, day centres and colleges. Data transcription was carried out by the researcher who became familiar with the content and inflections within the data. NVivo software enabled the data to be organised into codes and superordinate themes each comprising distinct sub-themes.

Data analysis

Interpretive Phenomenological Analysis (IPA) helped to gain the depth of analysis required when interviewing people whose perception of events may be quite different from the interviewer. Nvivo qualitative data analysis software (version and date) was used to establish two superordinate themes comprising ‘anxiety’ and ‘coping strategies’. It became clear that anxiety existed in many guises and situations during their period of hospitalisation and their various associated responses to manage their stress.

Descriptive comments from the transcripts identified key words, phrases or explanations of relevance which structured the participant’s thoughts and experiences. Subsequently, linguistic comments were made about the participants’ tone or whether or not they had expressed humour, the degree of fluency, hesitancy and ability to articulate their thoughts. Further, data interrogation identified conceptual comments (Smith et al 2013) often represented as a shift in the researcher’s focus on the questioning of the initial thoughts and interpretation of the data. Valuable comments were received following blind review of a number of transcripts by an ‘expert by experience’, a person with a diagnosis of Asperger’s syndrome.  The IPA procedures are outlined in Table 3.

Results

Participants (n=20) were demographically diverse as outlined in Table 2. The majority (75% n=15) were recruited via the local Autism/Asperger’s Support Group in the East of England. The sex ratio was 60% male (n=12) with a good representation of female participants (40% n=8). The average age was 35.5 years, and the time in which all the participants had spent in hospital as mental health inpatients was 6.3 years. More than a third (35% n=7) had at least one additional medical diagnosis and 95% (n=19) were taking psychotropic medication during admission. The participants were mostly diagnosed with psychotic disorder (25% n=5) or mood disorder (25% n=5), whilst 15% (n=3) reported other problems such as physical abuse and property destruction prior to admission. A total of 65% (n=13) were sectioned under the Mental Health Act (1983) either before or during their admissions.

Interviews lasted approximately one hour, with the longest lasting for two hours and 25 minutes. Two pilot interviews were conducted which helped refine the interview questions, and adjusted interviewer technique, including the tone of voice and intensity of eye contact and physical gestures, so reducing additional confusing information. Three interviews were short, and the conversation was limited due to the lack of willingness or confidence with the interviewee to fully engage and the remaining 15 interviews generated a wealth of relevant data. Of interest, nobody had ever asked what this experience was like for them so they were grateful for the opportunity to voice their opinions.

The data presents a range of themed quotations and observations linked to anxiety experienced by the participants during their time in the inpatient services, as well as a variety of coping strategies with the aim of dealing with existing anxiety and stress or pre-empting situations where increased levels of stress can be predicted.

Discussion

To establish a reliable coding framework all participants consented to a follow-up meeting or email/telephone conversation, to ascertain whether or not the points they made during the interviews had been interpreted correctly. Additionally, an inter-coding reliability framework was developed which enlisted the help of a research supervisor, an expert by experience and, a colleague with Asperger’s Syndrome with experience of working with other people with ASC who had experienced mental ill-health. The expert by experience independently reviewed and coded the transcripts enabling comparison to establish that the research analyst’s emerging themes were similar. The following results outline two superordinate themes: ‘anxiety’ and, ‘anxiety coping strategies’.

Anxiety

The interviews emphasised the presence of anxiety organised in the following key categories: fear, communication and emotional detachment will be discussed in relation to discharge and connecting items below. Anxiety as a superordinate theme mostly relates to the causes and comprised of the most spoken about subject in the interviews.

Fear

Often when fear and anxiety become exhaustive, participants resort to violent acts towards other people and the nurses were very much in the firing line. The severity varied from shouting, swearing and screaming to physical aggression causing injury. Most of the violence reported in this study would appear to be short-lived and limited to an outburst rather than a sustained attack. However, it is apparent that even a short-lived violent outburst, caused by a build-up of anxiety in patients with autism, can be destructive and serious. Indeed, Rodgers et al (2012) also described behaviours witnessed in their study to be short and explosive and apparently a way of coping with anxiety quickly. One participant explained how the sensory conditions of the physical environment coupled with a nurse talking to him about his planned discharge, simply overloaded his capacity to absorb more information. Once his capacity was breached, he described the need to stop the source of the information and attacked the nurse causing serious injury resulting in the attendance at an accident and emergency department.

There were numerous accounts from participants not being able to act of their own volition through experiencing external forces of control and responsibility over their lives during their stay. The participants generally experienced the staff as being in a position of control and authority and were therefore able to make decisions about how and when their discharge would happen. One participant claimed that the discharge plan had not even been discussed with them or their family, therefore feeling powerless to influence proceedings in any way.

There were numerous accounts of participants not being able to act of their own volition through experiencing external forces of control and responsibility over their lives during their stay, one participant stating:

“Everything I wanted to do and anywhere I wanted to go had been negotiated through my named nurse, invariably the answer would be no.  Even when my family asked on my behalf, the answer would still normally be no. Being so restricted had a negative impact on my ability to prepare for discharge and back into the real world where I would be expected to make all of my own decisions. Sometimes I felt that the staff would enforce restrictions just to ensure that we knew who was in charge.”

I recall hearing the anxiety returning in some of the participants’ voices as they explained to me the fear that they had felt because they were uncertain when they could regain control and begin to take back their lives, so that life became more predictable once again. One participant explained:

“The pain of not knowing what is going to happen next, or who is going to decide what is going to happen next, how long I was going to be here for, how long I was going to feel this way, was far too much to bear. It forces you to go into yourself, to try and take yourself to a place where they can’t get to. Control is everything to me, my life on the outside of hospital is very predictable, routines and structures without any surprises. I control every aspect of my life. If this stops, my anxiety increases rapidly.”

The same participant explained that when they were informed that the multidisciplinary team had agreed their discharge they experienced a confusing range of emotions including initial joy and relief, followed by huge anxiety and fear.

Emotional Detachment

Participants experiencing longer admission periods reported a disconnection with family and friends: they were more likely to maintain regular contact during the early periods of the admission, compared with the latter period:

“Maintaining relationships with people within my current environment, seemed more important than preserving contact with people whom I see very seldom and are not part of my day-to-day life.” 

“During the first few weeks the only thing that kept me going was ringing home, this became less and less important and I don’t think I spoke to my family at all during the last few weeks.”

The matter-of-fact way that this participant explained the process of disconnecting with family and friends gave the impression that there was little consideration for their feelings. The notes I took during the interviews consistently reminded me that I had the same feeling at the time I heard these comments, a feeling that they were either unaware of or were disinterested in the feelings of those closest to them at these significantly stressful times for everybody concerned.

“I got used to my current surroundings, routines, structures and the people in it, everything else goes out the window.”

The same participants who discussed the process of this with family and friends also discussed the process of reconnection once they came closer to leaving, or had been discharged:

“My family took my lack of contact to heart, they could not understand why I didn't need them during my time as an inpatient.  This caused problems on discharge, when I felt the need to reach out to them, there was a reluctance on their part at first to speak with me”.

Another explained the desire to reconnect with his family after a period of very little contact that lasted approximately six months:

“As my anxious state of mind began to diminish, I became more able to see the world beyond the inpatient unit and the day-to-day survival that I had endured for most of my inpatient stay.  I suddenly felt the need to attach once again with my family and some of my friends, they have been out of sight and completely out of my mind for a long time. It is almost as if I didn't need them in there, therefore couldn't see the point in keeping in touch with them if they were unable to help me.”

My interpretation of this final quotation was that the nurses and the other frontline caregivers had assumed responsibility for their everyday psychological support and care which was previously provided by the family.

Communication

Social relationships for many people with ASC, are impaired by the person with autism feeling insecure. These feelings of insecurity are caused by a number of factors, including low self-esteem, having insight into poor communication skills and not been able to trust others (Jones and Meldal, 2001). One participant in this study described how not trusting anybody, including the health practitioners and patients, was a coping strategy. He felt extremely paranoid about other people and the control they appear to have on his life at that time. Another participant thought the staff had been ‘cold’ towards her, a clear indication that she was not liked by them and therefore would be against her. Ultimately the message emerging from the data suggests a strong correlation between a ‘lack of control’ that many of these participants felt during the time in the inpatient units and a ‘mistrust of those who represent power’ or the ability to exercise control over their lives. Maisel et al (2016) suggest that the poor emotional recognition experienced by people with ASC, can lead to the confusion and mistrust of relationships.

The participants held in high value clear and concise communication from the front-line caregivers. Often the relationship between the health professionals and the participants suffered due to inaccurate information being given. Participants referred to their carers as ‘liars’ and being ‘dishonest’; some of the evidence would suggest that the care team had attempted to communicate in a way that they perceived appropriate, but that the patients did not. Discussions relating to discharge was commonly commented upon as examples of such inaccuracy.

Charlie claimed that the staff had ‘blatantly lied’ and consequently they could no longer trust that member of staff.

“The blatant lies the people say to you, for example the nurse who looked after me on the unit was always very happy and very positive, would always say that things are going to be okay for me not to worry because things would be all right in the long run. However, they weren’t okay, actually most my time on the unit things were a long way from okay, since she lied to me in this way I can’t trust her again.” 

“Problematic encounters for people with autism as you would expect can lead to stress and anxiety. Nearly every mental health practitioner I worked with within the psychiatric inpatient unit could have made relatively simple changes to the accuracy of their language, which will have enhanced my experience twofold. Until people realise that being falsely positive, or have a laugh, or making fun of to relax them and make them feel better, or saying you will be going home soon, without telling me exactly when, has extensive repercussions, the likelihood is that communication used by the staff on the units will only increase anxiety and not help or assist with recovery.”

It may well be that the extracts above are examples of misinterpretation on the part of a person with ASC, rather than the practitioner trying to mislead them. People with ASC interpret language quite literally; for example, irony, sarcasm, figurative language, rhetorical questions, idioms and exaggeration can all be extremely misleading and confusing to the autistic ear (NAS, 2018).

The next extracts raise the question of the staff’s ability to interact with people with autistic spectrum conditions in an informed way.   The National Autistic Society (2018) offers guidance on how to communicate with people with autism; their online Communication e-learning module offers guidance on supporting the listener and not overloading them with the information they are trying to process. An autistic person can find it difficult to filter out less important information: therefore, it is important to try to keep to the most important information, ‘say less and say it slowly’. The following extracts are clear examples of what can happen if simple guidance is not followed:

“Everybody I know apart from a very few people have no idea how to communicate with people of autism. Therefore, the care team on the psychiatric unit were no different. I have processing issues, is not to say I’m thick, it’s just that I need time to keep up with the level of conversation and the speed of a conversation. Sometimes there can be gaps or silences when I speak to people. For example, a nurse on the unit would ask me a question, and before I had a chance to reply or process what she was asking me properly, she has become uncomfortable with the silence and filled the gap with another comment or question. At this point I’m still thinking about the first sentence she said and can’t concentrate on the second. Sometimes people have told me at this point I look very dazed and confused, I’m not confused or dazed I’m just trying to keep up the conversation and thinking very hard about how to respond to the first question and if you then hit me with a second and you’ll probably lose me. Many people with Asperger’s and high functioning autism, very clever people suffer from the same processing disorder.” 

Another participant concurs:

“She (the nurse) was very busy and I understand she had to move quickly, it was too quick for me and I think she just thought I was completely thick.”

Another participant with similar difficulties:

“If my named nurses talking to me and not waiting for me to catch up I quite often get stuck on something she asked me, and because she was a bit of a chatterbox she will fill that gap with another question and I would be lost.” 

A different participant questioned whether the care team in this particular inpatient unit had received training in communication strategies and approaches for ASC. Since the implementation of the Autism Act in 2009, many mental health practitioners undertook autism training which encompasses strategies for communication (Public Health England, 2016). The training will typically be guided by the communication principles offered by the National Autistic Society, i.e. how to use less non-verbal communication, use of visual supports (e.g. symbols, timetables and social stories), and sentence construction, and avoiding open-ended questions (NAS, 2018).   He further explained:

“Some simple rules of how to communicate with people of autism could have been taught to the care team and I think they will get a lot more out of me, the main rule is to check your pace of your conversation and make sure that I’m able to keep up with you”. 

Another source of anxiety reported by many was their lack of understanding about how long they were going to be in the unit and how this had been communicated to them. Many people with autism live their life ‘by the clock’ so when they embark upon a certain activity very often they know exactly when it is going to end (Winter-Messiers, 2007). One of the most frustrating things about neuro-typical people for those on the autistic spectrum is their lack of appreciation of the importance of being on time. Many participants demanded to know how long they were going to spend on the unit when they arrived so when a concrete answer was not forthcoming this caused a great deal of distress. Additionally, there was a common misunderstanding as to what they needed to achieve or do with their time to be discharged from the unit as quickly as possible. As one participants explained:

“Ever since I was a child I have lived my life by the clock, I am constantly aware of the time. Where and what I need to be doing at particular times are crucially important to reducing my stress levels. Being in this alien environment and a non-prescribed amount of time felt almost cruel. I would constantly ask the staff when I can go home, I’m sure I drove them nuts!”

Unfortunately, self-harm is a common strategy to deal with acute anxiety and these acts vary considerably in severity (Lidstone et al, 2014). One participant reflected on extreme behaviour where he would bang his head against walls. His aim, quite literally, was to ‘knock the fear and anxiety out of his head’. Others reported cutting their bodies, most reported were superficial cuts at various anatomical locations. Whilst one participant articulated fluently the need for so many people with autism to regularly hurt them self:

“I use a short sharp pain to interrupt my anxiety and my worries. I call it my worry cycle and I have a couple of techniques that I know work for example, I flicked my earlobe really hard which gives me a sharp pain and it makes me think about the pain very quickly and sometimes I forget what I was worried about in the first place! Another thing I do is to wear an elastic band around my wrist and I snap it against my more sensitive underside of the wrist or I would just pinch myself hard. The little pain episode interrupts the train of thought enough to have to start thinking about it again from further back. In hospital I was constantly trying the strategies but none of them worked. That's mental illness, pure and simple, the stark difference between anxiety relating to the core features of autism and something that is much harder to control.”

The participants that reported self-injurious behaviours had all acknowledged these behaviours had increased at times when discharge was being discussed or felt imminent.

Conclusion

The purpose of this study was to understand the stress and anxiety experienced by in-patients with ASC and this paper is specific to the participants inevitable discharge and to understand the manifestations of their anxiety. An interesting dichotomy existed for the majority of participants when they discussed discharge.  There is an undoubted desire and almost obsession with being discharged as quickly as possible to regain control of their lives and deal with the ever-present stress and anxiety caused by the very nature of being an inpatient. But when that time arrives, and the discussions are suggesting that discharge back to where they came from or pastures new, are imminent the concept is suddenly fearful and unpredictable. This change of narrative and related emotion is consistent with how we understand the core features of ASC and in particular the intolerance of uncertainty and how it impacts upon decision-making and the ability to cope with major changes in their daily lives and routines. Therefore, we should not be surprised that, although inpatients are talking about very little else apart from getting out and getting on with their lives, that when the option arrives to leave the environments there are considerable anxieties which lead to undesirable coping strategies and even sabotage.

This study provides an in-depth analysis and considered interpretation to arrive at a greater understanding of the significant impact of discharge for the patients themselves. Most highlighted issues that impact upon their mental well-being which could be perceived as small, even trivial. Nevertheless, despite the perceived scale of the issue, this can prove to be a significant problem for them. To some extent the comments reveal why people with ASC adopt particular behaviours in this situation. There is no doubt that some of these behaviours can be particularly challenging to healthcare professionals, but with greater insight as to the root cause, practitioner responses could be more sensitive and therapeutic.

The participants were all very different in the way they presented during the interviews, therefore the interview technique and approach was constantly evaluated by the interviewer to ensure that their individual needs were being met. Some participants were able to recall and articulate their thoughts and feelings during the time of admission, whilst others found this a profoundly painful process and some struggled to remember what it was like and what they were thinking at the time. A small number of interviewees found the subject matter of the interview challenging and continually diverted the conversation towards the subject they felt more comfortable talking about.

Limitations

As this study had a relatively small sample and participant reflections may be limited to this group. It is questionable whether further research of this nature would glean greater insight. Perhaps this would be limited to the more knowledge of the types of stressors and range of coping strategies. It is, however, important that practitioners consider their own practice setting by encouraging training in this area and implement strategies to reduce the anxiety burden for this cohort.

Implications

Asking a person with autism what is important to them has the potential to help healthcare practitioners immensely. Given the consistent message in this study practitioners should expect challenges particularly around the time of discharge and should work closely with the inpatient to ensure that discharge is as smooth and as successful as possible.

Acknowledgements

I am totally indebted to those who agreed to participate so freely and so enthusiastically in this study; without their involvement the research would not have been possible. The participant’s contributions were supported by their families, friends and in particular their support workers from Hertfordshire County Council Asperger’s support group. I thank them very much for making time in their exceedingly busy lives to allow me to enter briefly into their world.

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First published on this site in 2021.

Table 1 – Participant profile

Table 2 - Participant characteristics

Table 3 - Outline of IPA procedures 

First published on this site in 2021.

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