Get 20M+ Full-Text Papers For Less Than $1.50/day. Start a 7-Day Trial for You or Your Team.

Learn More →

Understanding psychiatrists' knowledge, attitudes and experiences in identifying and supporting their patients on the autism spectrum: online survey

Understanding psychiatrists' knowledge, attitudes and experiences in identifying and supporting... BJPsych Open (2019) 5, e33, 1–8. doi: 10.1192/bjo.2019.12 Understanding psychiatrists’ knowledge, attitudes and experiences in identifying and supporting their patients on the autism spectrum: online survey Laura Crane, Ian Davidson, Rachel Prosser and Elizabeth Pellicano which were felt to challenge their ability to provide effective care Background and support for their patients on the autism spectrum. Psychiatrists play a critical role in identifying and supporting their patients on the autism spectrum in the UK, yet little is known Conclusions about their knowledge, attitudes and experiences in this regard. Psychiatrists’ views corroborated previous research with the Aims autism community, highlighting the need to co-design services that are accessible, respectful and person-centred. To understand psychiatrists’ experiences of working with autistic individuals, their confidence in making diagnostic/management Declaration of interest decisions and the factors that affect such decisions. I.D. is the Royal College of Psychiatrists’ Autism Champion. Method Keywords A total of 172 psychiatrists took part in an online self-report Autism; psychiatrist; diagnosis; identification; self-efficacy. survey. Results Copyright and usage Most psychiatrists reported receiving useful training on autism © The Royal College of Psychiatrists 2019. This is an Open Access and were knowledgeable about the condition, particularly those article, distributed under the terms of the Creative Commons with a personal connection to autism. Higher confidence in Attribution licence (http://creativecommons.org/licenses/by/ working with autistic patients was linked to greater levels of 4.0/), which permits unrestricted re-use, distribution, and autism knowledge, experience and training. Several systemic reproduction in any medium, provided the original work is and autism-specific factors were highlighted by psychiatrists, properly cited. Psychiatrists in the UK play a critical role in the recognition, assess- advertised via the Royal College of Psychiatrists, and internet snow- ment and healthcare of patients on the autism spectrum. This is balling methods, using social media, were used to recruit additional across a range of services (such as mental health, intellectual disabil- participants. The survey contained four parts and took approxi- ity (also known as learning disability in UK health services), paedi- mately 15–20 min to complete. atrics) and in a variety of roles (for example triggering access to, or Part one comprised 23 questions on the psychiatrists’ back- facilitating, a diagnostic pathway; making reasonable adjustments to ground, including basic demographics (i.e. age, gender, ethnicity), enable access to services). As limited knowledge and awareness of details of their qualifications and experience (i.e. year qualified, autism is a key barrier to receiving appropriate diagnostic and thera- country qualified in, years spent practising), current practice peutic support, having psychiatrists with a strong understanding of (i.e. geographic location, sector, role, speciality, length of time in autism is essential. Yet little is known about psychiatrists’ knowl- this practice, patient contact hours/week), and information edge about autism and about their confidence in making diagnostic regarding training and experience related to autism (i.e. number or management decisions. The few existing studies – largely con- of children and adults under their care, numbers of patients ducted outside of the UK – show that awareness of autism among approaching them about an autism diagnosis, training on autism professionals (for example psychiatrists, psychologists, neurologists, during and after qualifying as a psychiatrist, personal experience 2–4 paediatricians, speech and language therapists) is variable and of autism). that there are substantial discrepancies in professionals’ assessment Part two asked whether respondents were involved in the diag- 5,6 and diagnostic practices. To our knowledge, the only UK-based nosis of autism. If so, they were presented with eight questions on studies to explore a range of professionals’ views and experiences the use and utility of current diagnostic criteria, the procedures 7,8 of working with children and adults on the autism spectrum they would follow when patients do not meet formal diagnostic cri- focused exclusively on the diagnostic process, and comprised only teria or the threshold for autism on diagnostic tools, whether they few psychiatrists. There is, therefore, an urgent need to examine followed a standardised procedure for autism diagnosis, the screen- psychiatrists’ experience of working with individuals on the ing and diagnostic tools that they use (if any), and whether they have autism spectrum, their confidence in doing so and the factors that a waiting list for diagnostic assessments. affect these decisions. Part three comprised a Knowledge of Autism Scale, taken from a survey of UK-based general practitioners (GPs). This comprised 22 statements assessing participants’ knowledge of the early signs of Method autism, descriptive characteristics of autism and co-occurring beha- viours. Statements were rated as ‘true or false’. Participants were Online survey given a score of ‘1’ for each correct item and these scores were Psychiatrists were invited to take part in an online survey open summed to yield a total score (with higher scores reflecting between September 2017 and January 2018. The survey was greater knowledge of autism; maximum score 22). A knowledge Downloaded from https://www.cambridge.org/core. 04 Jul 2021 at 18:56:41, subject to the Cambridge Core terms of use. Crane et al score was then calculated, adjusting for chance responding, using Table 1 Participant characteristics (n = 172) the following equation: Characteristic Value Age, years R  [W=(n  1)]; Mean (s.d.) 48.56 (8.93) Range 31–73 where R is the number of right responses, W is the number of wrong Gender, n (%) responses and n is the number of items. Men 81 (47.1) Women 90 (52.3) The scale showed moderate internal consistency (Cronbach’s 9,10 Prefer not to say 1 (0.6) α = 0.64) in line with other knowledge of autism scales. Ethnicity, n (%) Part four was a self-efficacy scale, designed to assess respondents’ White 120 (69.8) confidence in the screening, diagnosis and management of their Black 4 (2.3) patients on the autism spectrum. This was adapted from an existing Asian 33 (19.2) survey of GPs by removing items not applicable to psychiatrists Mixed 6 (3.5) Any other ethnic group 2 (1.2) (such as ‘Knowing to whom to refer my patients I suspect of Prefer not to say 7 (4.1) having autism’) and adding additional items of relevance to psychia- Years practising as a psychiatrist, years trists (for example on knowledge of local care pathways and post- Mean (s.d.) 18.60 (9.72) diagnostic services). The final survey contained 19 statements that Range <1–48 respondents rated on a scale ranging from one (‘not at all confident’) Location of psychiatry practice, n (%) to ten (‘extremely confident’). Scores from each item were North East 11 (6.4) North West 42 (24.4) averaged to yield a mean self-efficacy score (higher scores reflected Yorkshire and the Humber 18 (10.5) greater self-efficacy). The scale showed excellent internal consistency East Midlands 12 (7.0) (α = 0.96). West Midlands 7 (4.1) The survey ended with optional free-text boxes, asking respon- East of England 7 (4.1) dents for their views on (a) their confidence in working with their London 14 (8.1) autistic patients; (b) what they feel works well and what could be South East 14 (8.1) improved in this regard; (c) the training that they felt would help South West 13 (7.6) Wales 10 (5.8) them more effectively work with their autistic patients; and (d) Scotland 21 (12.2) any other information they would like to add on the topic. Northern Ireland 3 (1.7) Ethical approval was granted by the Research Ethics Committee Sector of work, n (%) at UCL Institute of Education, University College London (REC Clinical, public 153 (89.0) 959). All participants provided informed consent to take part. Clinical, private 2 (1.2) Data were collected anonymously. Clinical, public and private 11 (6.4) Non-clinical practice – Other 6 (3.5) Participants Role, n (%) In total, 229 psychiatrists responded to the online survey. Responses Independent practitioner 6 (3.5) Part of multidisciplinary team 165 (95.9) were not considered for those who were not currently practising Other 1 (0.6) psychiatrists in the UK (n = 50) or did not progress past the Consultant, n (%) demographic information of the survey (n = 7). The final 172 Yes 159 (92.4) respondents (Table 1) had a broadly even gender split, with an No 13 (7.6) average age of 48 years and were largely from a White ethnic Speciality, n (%) background (n = 120; 69.8%). Almost all had qualified as Addictions 4 (2.3) Child and adolescent 40 (23.3) psychiatrists in the UK (n = 158; 91.9%) and the geographical distri- Eating disorders 3 (1.7) bution of their practice was diverse. Most worked in the public Forensic 4 (2.3) health sector (n = 153; 89.0%), as consultants (n = 159; 92.4%) in General adult 59 (34.3) multidisciplinary teams (n = 165; 95.9%), and had a range of Old age 12 (7.0) specialities. Respondents had spent an average of 19 years practis- Psychotherapy 2 (1.2) ing, with almost two-thirds (n = 106; 61.6%) spending more than Psychiatry of learning disabilities 29 (16.9) 5 years in their current role. They reported an average of Other 19 (11.0) Practice, n (%) 19 patient-contact hours each week. Community mental health team 86 (50.0) Out-patient clinic 52 (30.2) Data analysis Hospital ward 43 (25.0) General practice surgery 1 (0.6) Quantitative data are largely presented descriptively (n, %), with Other 34 (19.8) statistical analyses used to examine group differences (Mann Years in current role, n (%) Whitney U-tests) and relationships between variables (using bivari- <1 22 (12.8) ate correlational or stepwise regression analyses). Participants’ 1–5 44 (25.6) qualitative responses were analysed using thematic analysis. We More than 5 106 (61.6) adopted an inductive approach (i.e. without integrating the Hours per week patient contact Mean (s.d.) 19.23 (8.60) themes within any pre-existing coding schemes, or preconceptions Range 2–41 of the researchers), within an essentialist framework (to report the experiences, meanings and reality of the participants). This involved three authors independently familiarising themselves with the data, and reviewing the transcripts to develop an initial themes and subthemes using a semantic approach (identifying set of themes and subthemes. The authors reviewed the results on themes at a ‘surface’ level, without theorising beyond the actual several occasions, to resolve discrepancies and decide on the final content of the data). Downloaded from https://www.cambridge.org/core. 04 Jul 2021 at 18:56:41, subject to the Cambridge Core terms of use. Autism spectrum and psychiatrists’ knowledge, attitudes and experiences Table 2 Psychiatrists correct responses to items on the Knowledge of Autism Scale (n = 162) Psychiatrists giving a correct Item Answer (true/false) response, n (%) An autism diagnosis cannot be made before a child is 3 years of age False 99 (61.1) A child failing to respond to their name when called can be an early sign of autism True 118 (72.8) A lack of eye contact is necessary for a person to receive a diagnosis of autism False 157 (96.9) Research has shown that the measles, mumps, rubella vaccine is not a direct cause of autism True 153 (94.4) Autism is caused by a lack of bonding between mother and child False 159 (98.1) Autism is a rare condition, affecting only 15 per 10 000 individuals in the UK False 150 (92.6) Autism cannot be diagnosed in adulthood False 161 (99.4) The behaviours characteristic of autism are usually mild and transient, so specific intervention False 156 (96.3) is not usually required The prevalence of autism is greater in children than in adults False 131 (80.9) Younger siblings of children with autism have a higher probability (approximately 20%) of being True 142 (87.7) diagnosed with autism Most people with autism also have intellectual disabilities False 113 (69.8) Females are less likely to be diagnosed with autism than males True 155 (95.7) People with autism feel no empathy or affection False 156 (96.3) Children with autism can be interested in social interaction True 153 (94.4) More than half of people diagnosed with autism do not talk False 151 (93.2) Children with autism can show unusual reactions to certain smells and sounds True 160 (98.8) Additional mental health conditions (for example, anxiety, depression) are more prevalent in True 158 (97.5) individuals diagnosed with autism than in the general population Most children with autism eventually outgrow autism False 159 (98.1) Independent living is not possible for people with autism False 161 (99.4) The behaviours in autism can only be managed with medication False 161 (99.4) People with autism always display challenging behaviours False 156 (96.3) Children with autism tend to learn better when things are presented in a visual format True 135 (83.3) autism training, 76.5% (n = 114) reported that this was ‘quite’ or Results ‘very’ useful in preparing them to work with their autistic patients, with 19.5% (n = 29) reporting that the training was ‘not very’ useful Current practice when working with patients on the and 4.0% (n = 6) reporting that it was ‘not at all’ useful. autism spectrum Of the 172 respondents, just over a quarter reported having children Personal experience of autism on the autism spectrum under their care (n = 49; 28.5%). Of these, A total of 81 respondents (47.1%) reported some personal experi- 38.8% (n = 19) had fewer than 10, 28.6% (n = 14) had between 11 ence of autism, either through being autistic themselves (n = 2), and 30 and 32.7% (n = 16) had more than 30. A higher number having an autistic child (n = 12) or a relative (n = 36), colleague or (n = 120; 69.8%) reported having at least one autistic adult in their friend (n = 32) on the autism spectrum. care. Of these, 55.0% (n = 66) had fewer than 10, 27.5% (n = 33) had between 11 and 30 and 17.5% (n = 21) had more than 30. In Knowledge of autism the past year, 86.6% (n = 149) of respondents had been approached by at least one patient about a suspected autism diagnosis, with A total of 162 respondents completed the Knowledge of Autism 33.7% (n = 58) having been approached by more than ten. Most Scale, scoring highly (mean 91.2% correct; s.d. = 9.3, range 31.8– felt that this number had increased since beginning their profes- 100.0%) (Table 2). Respondents’ scaled knowledge scores expressed sional career (n = 137; 79.7%), 19.2% (n = 33) felt it had remained as a percentage of the total number of questions asked (mean 90.6%; steady, and 1.2% (n = 2) felt it had decreased. s.d. = 9.7; range = 28.6–100.0%) were not significantly associated with their age, r(162) = 0.04, P = 0.64, number of years practising as a psychiatrist, r(162) = 0.02, P = 0.76 or total number of autistic Training on autism patients currently under their care, r(162) = 0.05, P = 0.50. Just over two-thirds of respondents (n = 119; 69.2%) reported Mann–Whitney U-tests showed that scaled knowledge scores receiving specific training about autism during their primary were significantly higher for psychiatrists with personal experience medical degree, foundation degree or specialist psychiatric training of autism (median 20.95) that those without (median 19.90), (of these, 92 (77.3%) received this during specialist training). Many U = 2570, P = 0.02; but there was no significant difference in (n = 120, 69.8%) received specific training (for example via continu- scores between psychiatrists who had received training on autism ing professional development) on autism since qualifying as a and those who had not, U = 1302.5, P = 0.70. psychiatrist. This included diagnostic training, on specific diagnos- tic tests such as the Autism Diagnostic Observation Schedule 12 13 Diagnosing autism – processes and pathways (ADOS), Autism Diagnostic Interview-Revised (ADI-R), Developmental, Dimensional and Diagnostic Interview and A total of 111 psychiatrists reported that they were involved in diag- Diagnostic Interview for Social and Communication disorders nosing patients on the autism spectrum, and 109 provided informa- (DISCO); but also intervention training (for example cognitive– tion about waiting times: 55 (50.5%) reported having a waiting list behavioural therapy (CBT) for autistic patients) and generic for autism diagnostic assessments and, of these, 21.8% (n = 12) autism awareness courses. A significant minority of respondents had an average wait time of 1–3 months and 78.2% (n = 43) had (30.8%, n = 53) reported that they received no training on autism an average waiting time of over 3 months. during their primary medical or foundation degree or specialist psy- Of the 111 psychiatrists involved in diagnosis, the majority chiatric training. Of the 149 psychiatrists who had received some (n = 89; 80.2%) reported that they would refer to ICD diagnostic Downloaded from https://www.cambridge.org/core. 04 Jul 2021 at 18:56:41, subject to the Cambridge Core terms of use. Crane et al Table 3 Mean and mode scores for each item on the self-efficacy scale Mean score Item (s.d.) Range Mode score Recognising the signs and symptoms of autism in children 5.87 (2.70) 1–10 5.00 Recognising the signs and symptoms of autism in adults 6.83 (1.80) 1–10 6.00 Recognising the signs and symptoms of autism in boys and men 7.10 (1.92) 1–10 8.00 Recognising the signs and symptoms of autism in girls and women 6.38 (1.94) 1–10 7.00 Recognising the signs and symptoms in individuals with good spoken language and no apparent intellectual difficulties 6.73 (2.12) 1–10 8.00 Recognising additional psychiatric disorders (e.g. anxiety, depression) in autistic people who access my service 7.61 (1.80) 2–10 8.00 Managing additional psychiatric disorders (e.g. anxiety, depression) in autistic people who access my service 7.22 (2.10) 1–10 8.00 Recognising additional neurodevelopmental conditions (e.g. ADHD, OCD) in autistic people who access my service 6.94 (2.15) 1–10 9.00 Managing additional neurodevelopmental conditions (e.g. ADHD, OCD) in autistic people who access my service 6.60 (2.29) 1–10 8.00 Contributing effectively to helping services to manage the care of children on the autism spectrum 5.07 (2.94) 1–10 1.00 Contributing effectively to helping services manage the care of adults on the autism spectrum 5.66 (2.46) 1–10 5.00 Assessing the strengths, needs and aspirations of autistic people who access my service 6.48 (2.30) 1–10 8.00 Communicating with patients about a suspected diagnosis of autism 6.92 (2.21) 1–10 8.00 Knowing to whom to refer my patients I suspect of having autism 7.43 (2.55) 1–10 10.00 Knowing local care pathways for patients to access diagnostic assessments 7.43 (2.75) 1–10 10.00 Knowing local post-diagnostic services to refer patients who have received an autism spectrum diagnosis 6.13 (2.93) 1–10 8.00 Knowing the relevant care pathways/services for people on the autism spectrum 6.16 (2.76) 1–10 8.00 Knowing which community resources in my area are available for autistic children and/or adults 5.94 (2.72) 1–10 8.00 Identifying stress in the parents and carers of autistic people who access my service 7.00 (2.22) 1–10 8.00 Total 6.35 (2.43) ADHD, attention–deficit hyperactivity disorder; OCD, obsessive–compulsive disorder. a. Scores range from 1 (‘not at all confident’)to10(‘extremely confident’). criteria when considering possible autism, and 56.8% (n = 63) spectrum, psychiatrists often reported using a range of other 17,18 reported referring to DSM criteria. Most psychiatrists (n = 98; assessments, including those indexing co-occurring psychiatric 88.3%) found these diagnostic criteria ‘somewhat’, ‘very’ or conditions (n = 76; 68.5%), co-occurring neurodevelopmental con- ‘extremely’ useful when making diagnostic decisions (only 13 ditions (n = 62; 55.9%), functional ability (n = 62; 55.9%), medical psychiatrists (11.7%) found them ‘a little’ or ‘not at all’ useful). problems (n = 59; 53.2%), cognitive ability (such as intelligence Of the 110 psychiatrists involved in autism diagnosis, 69.1% tests; n = 39; 35.1%) and mental capacity (n = 32; 28.8%). A total (n = 76) had experienced situations where a child or adult did not of 16.2% of psychiatrists (n = 18) who were involved in autism meet the formal diagnostic criteria or threshold for autism on diagnosis reported using all of these additional assessments, with diagnostic tools, but their clinical judgement suggested otherwise 9% (n = 10) not using any formal assessment. (for example those showing atypical presentations of autism, such as women and girls on the autism spectrum). Of these, 36.8% (n Self-efficacy = 28) reported that they would give the individual a diagnosis of autism in this instance. The remainder provided alternative Respondents’ confidence in their ability to screen, diagnose and options, for example: offering an alternative diagnosis (such as aut- manage their patients on the autism spectrum ranged widely istic traits or features); using additional diagnostic tools to confirm (Table 3). Correlational analyses showed that higher self-efficacy their diagnoses; or referring the patient to an autism specialist team. scores were significantly related to better scaled knowledge of They also considered the utility of the diagnosis for the individual autism scores, r(158) = 0.26, P = 0.001 and the total number of and their family when deciding whether to give an autism diagnosis. autistic patients currently in their care, r(159) = 0.44, P < 0.001. In total, 111 of the psychiatrists involved in diagnosing autism Self-efficacy scores were not related to years practising as a psych- answered questions about their protocol for autism diagnosis and iatrist, r(159) = −0.005, P = 0.95. Mann–Whitney U-tests revealed the measures they use. Of these, 78.4% (n = 87) reported following that self-efficacy scores were significantly higher for psychiatrists a standardised protocol for autism diagnosis, often drawn from who had received training on autism (median 7.05) compared commonly used diagnostic instruments (such as the ADOS, ADI- with those who had not (median 4.68), U = 523, P < 0.001; yet 19,20 R) and local and/or national guidance. Psychiatrists also there was no significant difference in self-efficacy scores between reported using clinical judgement (n = 78; 70.3%), clinical observa- psychiatrists who had personal experience of autism and those tions (n = 71; 64.0%), parent report (n = 66; 59.5%), standardised who did not, U = 2833, P = 0.17. structured interview (n = 38; 34.2%), standardised observation mea- sures (n = 26; 23.4%) and DSM or ICD diagnostic criteria (n = 61; Predicting psychiatrists’ self-efficacy 55.0%). 44.1% of psychiatrists (n = 49) reported using a combin- ation of all of the above to inform their diagnosis. Multiple regression analysis was used to predict psychiatrists’ per- The most commonly used screening measure was the freely ceived self-efficacy, with years spent practising as a psychiatrist, available Autism Quotient (n = 43; 38.7%), with a wide number the number of autistic patients currently under their care, training of other screening tools (including the Social Communication on autism (either during their initial training or later in their Questionnaire, the Ritvo Autism Asperger Diagnostic Scale – careers) and personal experience of autism entered stepwise into 23 24 Revised, the Social Responsiveness Scale and the Autism the model, together with scaled knowledge scores. As shown in Behaviour Checklist being infrequently used. Almost half of the Table 4, respondents’ total number of autistic patients currently psychiatrists (n = 51; 45.9%) reported routinely using the ADOS- under their care as well as autism training were significant 2, making this the most commonly used diagnostic measure, fol- predictors, together explaining 24% of the variance in psychiatrists’ lowed by the ADI-R (n = 41; 36.9%) and the DISCO (n = 20; self-efficacy scores. There were no other significant predictors (all 18.0%). When assessing patients potentially on the autism Ps > 0.07), final model: F(2, 159) = 23.04, P < 0.001. Downloaded from https://www.cambridge.org/core. 04 Jul 2021 at 18:56:41, subject to the Cambridge Core terms of use. Autism spectrum and psychiatrists’ knowledge, attitudes and experiences Lack of clarity around diagnostic and support pathways, including lack Table 4 Summary of hierarchical regression analysis predicting psy- of cross-agency working chiatrists’ self-efficacy scores Psychiatrists further complained of a lack of clarity around diagnos- b (s.e.) β tic and support pathways, including lack of cross-agency working, Step 1 expressing concern that there is ‘no local guidance for diagnosis Constant 5.36 (0.29) – Number of patients on the autism spectrum 0.28 (0.06) 0.37* or management of autism and no agreed screening or assessment currently under their care pathways’. For many, this meant that services were ‘very poorly Step 2 signposted and confusing’, and ‘sometimes difficult to access’. Constant 3.77 (0.46) – Psychiatrists noted that ‘working effectively with other agencies pre- Number of patients on the autism spectrum 0.27 (0.05) 0.36* sents major challenges’ and stressed the need for a ‘more joined up currently under their care approach between social care, education and medical colleagues’; Autism training 1.83 (0.42) 0.30* currently, they felt a ‘big gap’ exists, ‘with many children falling in 2 2 a. R = 0.14 for Step 1, ΔR = 0.09 for Step 2 (Ps < 0.001). * P < 0.001. between… and therefore not getting the help that they need’. Some psychiatrists touched upon the idea of developing a ‘specialist service’ for autism diagnosis and support which ‘understands their needs’ and could ‘serve patients best’. Yet, others argued that ‘frag- Qualitative analysis of open-ended responses mented commissioning is not helpful’ suggesting that autism ser- Psychiatrists reported that working with their autistic patients was vices should be ‘within the mainstream services of adult mental ‘very, very rewarding’ work, and that ‘making a good assessment health and not in isolation’ because of co-occurring developmental and providing appropriate psychoeducation can make great differ- and mental health conditions. ence to the lives of these families’. Another commented that ‘the variety is immense’ and working with autistic patients offers ‘an ‘Commissioning gap’ for services for autistic adults without mental insight into a completely different way of looking at the world, it health issues or intellectual disability is fascinating’. Despite these positive sentiments, we identified Psychiatrists identified a ‘commissioning gap’ for services for seven themes, describing a range of systemic and autism-specific autistic adults without mental health issues or intellectual disability. challenges to delivering the most effective care and support (Fig. 1). They felt that provision of services for these autistic adults and young people was ‘markedly lacking’, with one commenting that ‘some see [individuals without a learning disability or mental Lengthy waiting lists mean a lack of timely support for patients health comorbidity] as not the remit of psychiatrists’. This meant that those ‘without significant social care needs or psychiatric Psychiatrists expressed concern that lengthy waiting lists mean a comorbidity [were] left without any support’– they may be seen lack of timely support for patients, with many speaking of waiting as ‘higher functioning’ and as such are not ‘important enough’,so periods during which the patient was not receiving any help or do not receive the support and services they require. Despite services support: ‘we need timely access to diagnostic services. Currently being hard to access without additional difficulties, psychiatrists we have a 1-year wait for assessment and during that 1-year wait also reported significant issues meeting the needs of those with we are lost as to how to help most persons’. One respondent referred these difficulties, commenting that mental health services are ‘reluc- to these waiting times as ‘unacceptably long’ and emphasised a need tant to work with autistic individuals’. They highlighted the lack of for ‘more personnel involved in multiagency assessment, identifica- ‘co-ordinated mental health services’ for those with autism and tion and management’. mental health problems, noting that such patients ‘can often be highly challenging to work with and staff are not trained appropri- ately’. As a result, there was uncertainty as to who could help them: Demand outstrips existing, chronically underresourced services and ‘the local autism team provides social care only and are hesitant to supports joint work if there is a potential mental health issue’. Meanwhile, In line with these comments, psychiatrists reported that demand there were a ‘lack of therapists who have experience and under- outstrips existing, chronically underresourced services and sup- standing of how to adapt CBT for young people and adults with ports, highlighting a broader issue in terms of healthcare resources. ASC [autism spectrum condition] and depression/anxiety’. The As one respondent noted: ‘services for general adult psychiatry are general sentiment was that there are ‘few professionals who feel con- woefully underprovided – autism is low on the pecking order. There fident managing [mental health difficulties] in autism and no pro- is no plan for service provision in general, never mind autism vision for those who show difficult behaviours’, resulting in them support’. Many reported frustration over the lack of staff at all ‘apologising a lot’. The respondents called for ‘greater acceptance’ levels in their services, which they felt ‘affects wait times and and ‘greater overall knowledge’ of autism in mental health services consistency for this group of patients’, as their time is ‘spent on and ‘improved recognition [and] intervention for mental health tasks that other [administrative] staff could do’. Psychiatrists comorbidities’ across the board. stressed that this had seriously negatively effects on the care they could provide as they ‘never [have] enough resources for Severely limited post-diagnostic support and services for patients and patients who should be getting help’. These generic problems their families were felt to be compounded for autistic patients as the diagnostic process is often lengthy: ‘[we need] more time and resources to These commissioning gaps contributed to a general lack of support assess these people, as it is very time consuming to do properly’. more broadly, with many psychiatrists raising the severely limited Further, as a result of increased recognition, ‘autism cases are rock- post-diagnostic support and services for patients and their families eting’ and ‘whilst increased recognition and understanding is as a key issue. Psychiatrists reported being ‘concerned’ and ‘fru- helpful, this has increased demand on services that already cannot strated’ by the lack of post-diagnostic services in place, with one cope’. One psychiatrist explained: ‘we are getting three referrals spe- commenting: ‘At the moment, people can be assessed for autism, cifically for autism diagnosis or management per week… it’s all but that’s where the road ends.’ Even if some services exist, chaos’. another psychiatrist observed: ‘I have knowledge of the limited Downloaded from https://www.cambridge.org/core. 04 Jul 2021 at 18:56:41, subject to the Cambridge Core terms of use. Crane et al Lengthy waiting lists mean a lack of timely support for patients Demand outstrips Tensions regarding the chronically under- position of autism in resourced services and society supports Systemic and autism- specific challenges to delivering effective care and support Need for better Lack of clarity around understanding of diagnostic and support autism, including for pathways, including professionals beyond lack of cross-agency psychiatry working ‘Commissioning gap’ Severely limited post- for services for autistic diagnostic support and adults without mental services for patients health issues or and families intellectual disability Fig. 1 The seven themes identified, which describe a range of systemic and autism-specific challenges to delivering the most effective care and support. options for post-diagnostic support that exist in my locality. The dif- have difficulty grasping concepts’. The respondents highlighted ficulty is that there are not enough (capacity or range) options avail- that ‘colleagues and trainees who haven’t had adequate clinical able’. As a result of the lack of National Health Service (NHS) exposure particularly to “typical cases” may misunderstand what follow-up services available, some psychiatrists reported turning is meant by some of the features’, and that this ‘lack of understand- to charities to help, however, they recognised that ‘there are ing’ could lead to misdiagnosis or failure to recognise ‘various limited funds to support [charitable] organisations’ so they could comorbid difficulties which often overlap with ASC’. Overall this only help a small number. Respondents called for more investment can result in ‘challenges in delivering a satisfactory service’ to and resources for post-diagnostic support services so that indivi- autistic individuals, thus they called for more training ‘all round’ duals have ‘easier access to support across the lifespan’, both to improve patient care. within the health service and for ‘better community support’ so Psychiatrists who were more confident recognised that personal that autistic individuals could ‘integrate properly into mainstream and professional experience helps. Psychiatrists who had regularly schools’ and receive help ‘entering employment’. The lack of post- seen autistic individuals as part of their ‘day-to-day’ job were diagnostic support may exacerbate the constraints to care already more confident supporting them. One psychiatrist recognised that noted: ‘The lack of access to specific services for people with because of their experience, they were ‘certainly more [confident] autism has caused repeated readmissions in many of my patients. than [they] would have been earlier in [their] work career’. A few They do not have the right support in the community’. psychiatrists reported that they ‘undertook specific training’ as they recognised a need for autism awareness in their professional practice: ‘I have had a special interest in the condition as I was Need for better understanding of autism, including for professionals aware the diagnosis may have been missed in several patients on beyond psychiatry my case load’. Others attributed their knowledge to personal experi- Many psychiatrists emphasised the need for better understanding of ence of autism, for example having a child on the autism spectrum: autism, including for professionals beyond psychiatry. They stressed ‘A lot of my knowledge comes from carrying out additional reading that there needed to be ‘greater specialist training for all multidiscip- and study due to having a child with autism myself, rather than linary team staff [as] generally confidence is low with autism cases’ through what I learnt during training’. and that ‘better general awareness’ was needed in ‘all professional groups’. One psychiatrist commented that colleagues seemed ‘very Tensions regarding the position of autism in society reluctant or ignorant in dealing with people with autism’, and another found that ‘colleagues both medical and non-medical Psychiatrists reported tensions regarding the position of autism in [are] relatively unsympathetic to patients with the condition and society, and whether it should be viewed as a disability or a Downloaded from https://www.cambridge.org/core. 04 Jul 2021 at 18:56:41, subject to the Cambridge Core terms of use. Autism spectrum and psychiatrists’ knowledge, attitudes and experiences difference. As summarised by one respondent: ‘autism, like some more prominent in the Mental Health Minimum Data Set for other diagnostic entities, occupies an interesting position in England (collecting patient-level data on children, young people society, in that it is defined in the diagnostic manuals as having and adults in contact with mental health, intellectual disabilities areas of impairment (akin to deficit model), yet for some autistic or autism services). Likewise, since April 2018, data have been col- individuals this is/feels oppressive and disabling/disablist’. This lected on autism diagnosis waiting times. The goal is that these poses a difficult balance for psychiatrists as they ‘look hard for the initiatives will aid in service and delivery planning and start to things that children cannot do and the social skills that are address unwarranted variance in autism support and services missing’; however, this can result in diagnoses being ‘disabling’ as across England. The current findings will further inform these parents have lower expectations of what their child is able to do and future Royal College of Psychiatrists initiatives to help (‘he can’t do that, he’s autistic’). Some therefore stressed a need to improve psychiatrists’ confidence in working with their autistic ‘ensure that we speak about the positives and strengths of young patients. people with autism’. For one psychiatrist, it was unclear whether diagnosis was actually ‘necessary or helpful in all cases’ considering Co-occurring conditions some people have ‘developed strategies to enable them to function Our sample of psychiatrists highlighted specific challenges meeting well without distress’. However, another highlighted that ‘those the needs of currently underserved groups of the population on the with LD [learning disability] and autism may be unintentionally autism spectrum, such as autistic adults with co-occurring mental excluded’ by this as ‘they go against growing sentiment that health conditions and/or intellectual disabilities. They noted that autism cannot or should not be characterised by overt difficulty/dis- both mental health services and autism-specific services were reluc- ability’, making it hard to strike a fair balance that meets the needs of tant to work with autistic patients with mental health problems. this very heterogeneous group without being overly pathologising in These reports corroborate those of autistic adults, who have the process. voiced their concerns at the lack of clear pathways when seeking help for their mental health problems. As up to 70–80% of people on the autistic spectrum have additional psychiatric diagno- Discussion 28,29 ses, and autistic adults without intellectual disabilities are nine times as likely to die by suicide, it is essential that services are Main findings well-equipped to support autistic people who have co-occurring The psychiatrists who participated in this study reported that they mental health diagnoses. Together, these findings will inform the commonly encountered patients on the autism spectrum as part of Royal College of Psychiatrists’ initiatives to ensure that autism their professional roles, and acknowledged that the number of does not become a diagnosis of exclusion and that mental health ser- autistic patients on their case-loads was increasing. This finding vices are able to make person-centred reasonable adjustments to demonstrates the importance and timeliness of the current survey, ensure autistic people who have mental health conditions have which – to our knowledge – is the first to exclusively survey psychia- equity of access and service with non-autistic people. trists about autism. Psychiatrists reported working with patients on the autism spectrum to be a rewarding part of their role. Most had The issue of specialist services received training on autism, which they found to be useful, and their knowledge about autism was high, particularly for those with One further tension in the current study focused on whether there a personal connection to autism. Psychiatrists’ self-efficacy varied should be specialist services for patients on the autism spectrum, or in relation to different aspects of their role, but higher levels of whether existing services should be more inclusive of autistic self-efficacy were linked to greater knowledge, experience and train- patients. Although our sample of psychiatrists often discussed ing in autism. Analyses of open-ended data highlighted a number of these possibilities as a dichotomy, it may be that the adoption of systemic and autism-specific factors that psychiatrists felt challenged both models of service delivery could be advantageous. For their ability to provide the most effective care and support for their example, specialist diagnostic assessment may be helpful to identify autistic patients. the specific strengths, needs and aspirations of the patient, provide With high levels of knowledge, experience and training in autism initial post-diagnostic support and serve as a consultation or liaison (all of which were related to increased self-efficacy), the psychiatrists model to primary care services. Yet, such specialist services should surveyed in this study had good knowledge of diagnostic tools and not prevent autistic people from being able to access generic processes, and used these in conjunction with clinical judgement primary care services, as well as specialist physical health, mental to best meet the needs of their patients. Notwithstanding, they health or intellectual disability services, without any more barriers reported several systemic factors (largely perceived to be outside of or restrictions than those that apply to people who are not autistic. their control) that challenged their ability to work effectively with Whatever the model of service delivery, there will be the need to their autistic patients. In relation to autism diagnosis – a key area make reasonable adjustments to ensure that access for autistic in which psychiatrists are involved – the current findings echo patients is both meaningful and equitable. One key way to achieve 8,26 1,26 those reports from parents and autistic adults in highlighting this is to involve members of the autism community in service plan- lengthy waiting times and limited post-diagnostic support for chil- ning, to ensure that the resulting services are respectful, accessible 9,31 dren and adults on the autism spectrum. They also confirm the and patient-centred. lack of clarity regarding diagnostic pathways for patients on the autism spectrum, as reported by other UK professionals involved Limitations 7,9 in the autism diagnostic process. This survey represents the first to focus exclusively on psychiatrists’ knowledge, experience and confidence in working with their Initiatives to improve support and services patients on the autism spectrum. It is not, however, without its lim- The Royal College of Psychiatrists has implemented several mea- itations. First, although 28.5% of respondents had children on the sures to begin to address such issues. For example, the Royal autism spectrum on their case-load, the majority (69.8%) had autis- College of Psychiatrists recently worked with the Department of tic adults as their patients, which may have had an impact on some of Health, NHS Digital and other partners to ensure that autism was the findings of the survey (for example regarding their reports of a Downloaded from https://www.cambridge.org/core. 04 Jul 2021 at 18:56:41, subject to the Cambridge Core terms of use. Crane et al 10 Stone WL. Cross-disciplinary perspectives on autism. J Pediatr Psychol 1987; relative lack of confidence in supporting children on the autism 12: 615–30. spectrum). Second, while the sample represented a high number 11 Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol of psychiatrists relative to other research that has included this pro- 2006; 3:77–101. 7,26 fessional group, the response rate was fairly low: with an estimate 12 Lord C, Rutter M, DiLavore PC, Risi S, Gotham K, Bishop SL. Autism Diagnostic of around 7000 psychiatrists practising in the UK, approximately Observation Schedule (2nd edn). Western Psychological Services, 2012. 2.5% participated in this survey. Third, given that just under half 13 Lord C, Rutter M, Le Couteur A. Autism Diagnostic Interview-Revised: a revised of respondents reported having some personal connection with version of a diagnostic interview for caregivers of individuals with possible per- vasive developmental disorders. J Autism Dev Disord 1994; 24: 659–85. autism (as found in research on UK GPs), the sample may also be 14 Skuse D, Warrington R, Bishop D, Chowdhury U, Lau J, Mandy W, et al. The biased, with those with a keen interest in autism being more likely developmental, dimensional and diagnostic interview (3di): a novel computer- to respond. This limitation suggests that we must exert caution in ized assessment for autism spectrum disorders. J Am Acad Child Adolesc interpreting these results but also, critically, that we may be under- Psychiatry 2004; 43: 548–58. estimating some of the issues at hand. 15 Wing L, Leekam SR, Libby SJ, Gould J, Larcombe M. The diagnostic interview for With autism now listed as an NHS priority in England, and with social and communication disorders: background, inter-rater reliability and clinical use. J Child Psychol Psychiatry 2002; 43: 307–25. a Royal College of Psychiatrists Championing Autism campaign 16 World Health Organization. The ICD-10 Classification of Mental and Behavioural currently running to July 2020, there is an opportunity to enact Disorders: Diagnostic Criteria for Research. World Health Organization, 1992. meaningful changes to the way psychiatry supports children, 17 American Psychiatric Association. Diagnostic and Statistical Manual of Mental young people and autistic adults in England. Investment in more Disorders: DSM-IV-TR. American Psychiatric Association, 1994. effective – and particularly, local – services should contribute to a 18 Association AP. Diagnostic and Statistical Manual of Mental Disorders (5th edn). reduced need for interactions with psychiatric services, especially American Psychiatric Association, 2013. in times of crisis, and ultimately serve to improve the mental 19 National Institute for Health and Care Excellence. Autism: Recognition, Referral well-being of people on the autism spectrum and their families. and Diagnosis of Children and Young People on the Autism Spectrum. CG128. NICE, 2011. 20 National Institute for Health and Care Excellence. Autism: Recognition, Referral, Laura Crane , Associate Professor, Centre for Research in Autism and Education, Diagnosis and Management of Adults on the Autism Spectrum. CG142. NICE, UCL Institute of Education, UK; Ian Davidson, RCPsych Autism Champion and Consultant Psychiatrist, Royal College of Psychiatrists; and ASD Service, Cheshire and 21 Baron-Cohen S, Wheelwright S, Skinner R, Martin J, Clubley E. The autism-spec- Wirral Partnership NHS Foundation Trust, UK; Rachel Prosser, Undergraduate trum quotient (AQ): evidence from asperger syndrome/high-functioning aut- Placement Student, Centre for Research in Autism and Education, UCL Institute of Education, UK; Elizabeth Pellicano, Professor of Educational Studies, Department of ism, malesand females, scientists and mathematicians. J Autism Dev Disord Educational Studies, Macquarie University, Australia 2001; 31:5–17. 22 Rutter M, Bailey A, Lord C. The Social Communication Questionnaire. Western Correspondence: Laura Crane, Centre for Research in Autism and Education (CRAE), UCL Institute of Education, University College London, London WC1H 0NU, UK. Psychological Services, 2003. Email: [email protected] 23 Ritvo RA, Ritvo ER, Guthrie D, Ritvo MJ, Hufnagel DH, McMahon W, et al. The Ritvo Autism Asperger Diagnostic Scale-Revised (RAADS-R): a scale to assist First received 22 Sep 2018, final revision 12 Feb 2019, accepted 17 Feb 2019 the diagnosis of autism spectrum disorder in adults: an international validation study. J Autism Dev Disord 2011; 41: 1076–89. 24 Constantino JN, Gruber CP. Social Responsiveness Scale - Second Edition (SRS-2). Western Psychological Services, 2012. 25 Krug DA, Arick J, Almond P. Behavior checklist for identifying severely handi- capped individuals with high levels of autistic behavior. J Child Psychol References Psychiatry 1980; 21: 221–9. 26 Crane L, Batty R, Adeyinka H, Goddard L, Henry LA, Hill EL. Autism diagnosis in the United Kingdom: perspectives of autistic adults, parents and professionals. 1 Jones L, Goddard L, Hill EL, Henry LA, Crane L. Experiences of receiving a diag- J Autism and Dev Disord 2018; 48: 3761–72. nosis of autism spectrum disorder: a survey of adults in the United Kingdom. J Autism Dev Disord 2014; 44: 3033–44. 27 Crane L, Adams F, Harper G, Welch J, Pellicano E. ‘Something needs to change’: mental health experiences of young autistic adults in England. Autism 2019; 23: 2 Heidgerken AD, Geffken G, Modi A, Frakey L. A survey of autism knowledge in a 477–93. health care setting. J Autism Dev Disord 2005; 35: 323–30. 28 Lever AG, Geurts HM. Psychiatric co-occurring symptoms and disorders in 3 Imran N, Chaudry MR, Azeem MW, Bhatti MR, Choudhary ZI, Cheema MA. A sur- young, middle-aged, and older adults with autism spectrum disorder. J vey of autism knowledge and attitudes among the healthcare professionals in Autism Dev Disord 2016; 46: 1916–30. Lahore, Pakistan. BMC Pediatrics 2011; 11: 107. 29 Simonoff E, Pickles A, Charman T, Chandler S, Loucas T, Baird G. Psychiatric dis- 4 Rhoades RA, Scarpa A, Salley B. The importance of physician knowledge of aut- orders in children with autism spectrum disorders: prevalence, comorbidity, ism spectrum disorder: results of a parent survey. BMC Pediatrics 2007; 7: 37. and associated factors in a population-derived sample. J Am Acad Child 5 Taylor LJ, Eapen V, Maybery MT, Midford S, Paynter J, Quarmby L, et al. Adolesc Psychiatry 2008; 47: 921–9. Diagnostic evaluation for autism spectrum disorder: a survey of health profes- 30 Hirvikoski T, Mittendorfer-Rutz E, Boman M, Larsson H, Lichtenstein P, Bölte S. sionals in Australia. BMJ Open 2016; 6: e012517. Premature mortality in autism spectrum disorder. Br J Psychiatry 2016; 208: 6 Ward SL, Sullivan KA, Gilmore L. Practitioner perceptions of the assessment and 232–8. diagnosis of autism in Australia. Aust Psychol 2016; 51: 272–9. 31 Nicolaidis C, Raymaker DM, Ashkenazy E, McDonald KE, Dern S, Baggs AE, et al. 7 Rogers CL, Goddard L, Hill EL, Henry LA, Crane L. Experiences of diagnosing aut- ‘Respect the way I need to communicate with you’: healthcare experiences of ism spectrum disorder: a survey of professionals in the United Kingdom. adults on the autism spectrum. Autism 2015; 19: 824–31. Autism 2016; 20: 820–31. 32 Royal College of Psychiatrists. Census 2017: Workforce Figures for Consultant 8 Crane L, Chester JW, Goddard L, Henry LA, Hill E. Experiences of autism and Speciality Doctor Psychiatrists 2017. Royal College of Psychiatrists, 2017 diagnosis: a survey of over 1000 parents in the United Kingdom. Autism (https://www.rcpsych.ac.uk/improving-care/workforce/our-workforce-census). 2016; 20: 153–62. 9 Unigwe S, Buckley C, Crane L, Kenny L, Remington A, Pellicano E. GPs’ confi- dence in caring for their patients on the autism spectrum: an online self-report study. Br J Gen Pract 2017; 67: e445–52. Downloaded from https://www.cambridge.org/core. 04 Jul 2021 at 18:56:41, subject to the Cambridge Core terms of use. http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png BJPsych Open Unpaywall

Understanding psychiatrists' knowledge, attitudes and experiences in identifying and supporting their patients on the autism spectrum: online survey

Download PDF
8 pages

Loading next page...
 
/lp/unpaywall/understanding-psychiatrists-knowledge-attitudes-and-experiences-in-aTo9Mk0FRm

References (64)

Publisher
Unpaywall
ISSN
2056-4724
DOI
10.1192/bjo.2019.12
Publisher site
See Article on Publisher Site

Abstract

BJPsych Open (2019) 5, e33, 1–8. doi: 10.1192/bjo.2019.12 Understanding psychiatrists’ knowledge, attitudes and experiences in identifying and supporting their patients on the autism spectrum: online survey Laura Crane, Ian Davidson, Rachel Prosser and Elizabeth Pellicano which were felt to challenge their ability to provide effective care Background and support for their patients on the autism spectrum. Psychiatrists play a critical role in identifying and supporting their patients on the autism spectrum in the UK, yet little is known Conclusions about their knowledge, attitudes and experiences in this regard. Psychiatrists’ views corroborated previous research with the Aims autism community, highlighting the need to co-design services that are accessible, respectful and person-centred. To understand psychiatrists’ experiences of working with autistic individuals, their confidence in making diagnostic/management Declaration of interest decisions and the factors that affect such decisions. I.D. is the Royal College of Psychiatrists’ Autism Champion. Method Keywords A total of 172 psychiatrists took part in an online self-report Autism; psychiatrist; diagnosis; identification; self-efficacy. survey. Results Copyright and usage Most psychiatrists reported receiving useful training on autism © The Royal College of Psychiatrists 2019. This is an Open Access and were knowledgeable about the condition, particularly those article, distributed under the terms of the Creative Commons with a personal connection to autism. Higher confidence in Attribution licence (http://creativecommons.org/licenses/by/ working with autistic patients was linked to greater levels of 4.0/), which permits unrestricted re-use, distribution, and autism knowledge, experience and training. Several systemic reproduction in any medium, provided the original work is and autism-specific factors were highlighted by psychiatrists, properly cited. Psychiatrists in the UK play a critical role in the recognition, assess- advertised via the Royal College of Psychiatrists, and internet snow- ment and healthcare of patients on the autism spectrum. This is balling methods, using social media, were used to recruit additional across a range of services (such as mental health, intellectual disabil- participants. The survey contained four parts and took approxi- ity (also known as learning disability in UK health services), paedi- mately 15–20 min to complete. atrics) and in a variety of roles (for example triggering access to, or Part one comprised 23 questions on the psychiatrists’ back- facilitating, a diagnostic pathway; making reasonable adjustments to ground, including basic demographics (i.e. age, gender, ethnicity), enable access to services). As limited knowledge and awareness of details of their qualifications and experience (i.e. year qualified, autism is a key barrier to receiving appropriate diagnostic and thera- country qualified in, years spent practising), current practice peutic support, having psychiatrists with a strong understanding of (i.e. geographic location, sector, role, speciality, length of time in autism is essential. Yet little is known about psychiatrists’ knowl- this practice, patient contact hours/week), and information edge about autism and about their confidence in making diagnostic regarding training and experience related to autism (i.e. number or management decisions. The few existing studies – largely con- of children and adults under their care, numbers of patients ducted outside of the UK – show that awareness of autism among approaching them about an autism diagnosis, training on autism professionals (for example psychiatrists, psychologists, neurologists, during and after qualifying as a psychiatrist, personal experience 2–4 paediatricians, speech and language therapists) is variable and of autism). that there are substantial discrepancies in professionals’ assessment Part two asked whether respondents were involved in the diag- 5,6 and diagnostic practices. To our knowledge, the only UK-based nosis of autism. If so, they were presented with eight questions on studies to explore a range of professionals’ views and experiences the use and utility of current diagnostic criteria, the procedures 7,8 of working with children and adults on the autism spectrum they would follow when patients do not meet formal diagnostic cri- focused exclusively on the diagnostic process, and comprised only teria or the threshold for autism on diagnostic tools, whether they few psychiatrists. There is, therefore, an urgent need to examine followed a standardised procedure for autism diagnosis, the screen- psychiatrists’ experience of working with individuals on the ing and diagnostic tools that they use (if any), and whether they have autism spectrum, their confidence in doing so and the factors that a waiting list for diagnostic assessments. affect these decisions. Part three comprised a Knowledge of Autism Scale, taken from a survey of UK-based general practitioners (GPs). This comprised 22 statements assessing participants’ knowledge of the early signs of Method autism, descriptive characteristics of autism and co-occurring beha- viours. Statements were rated as ‘true or false’. Participants were Online survey given a score of ‘1’ for each correct item and these scores were Psychiatrists were invited to take part in an online survey open summed to yield a total score (with higher scores reflecting between September 2017 and January 2018. The survey was greater knowledge of autism; maximum score 22). A knowledge Downloaded from https://www.cambridge.org/core. 04 Jul 2021 at 18:56:41, subject to the Cambridge Core terms of use. Crane et al score was then calculated, adjusting for chance responding, using Table 1 Participant characteristics (n = 172) the following equation: Characteristic Value Age, years R  [W=(n  1)]; Mean (s.d.) 48.56 (8.93) Range 31–73 where R is the number of right responses, W is the number of wrong Gender, n (%) responses and n is the number of items. Men 81 (47.1) Women 90 (52.3) The scale showed moderate internal consistency (Cronbach’s 9,10 Prefer not to say 1 (0.6) α = 0.64) in line with other knowledge of autism scales. Ethnicity, n (%) Part four was a self-efficacy scale, designed to assess respondents’ White 120 (69.8) confidence in the screening, diagnosis and management of their Black 4 (2.3) patients on the autism spectrum. This was adapted from an existing Asian 33 (19.2) survey of GPs by removing items not applicable to psychiatrists Mixed 6 (3.5) Any other ethnic group 2 (1.2) (such as ‘Knowing to whom to refer my patients I suspect of Prefer not to say 7 (4.1) having autism’) and adding additional items of relevance to psychia- Years practising as a psychiatrist, years trists (for example on knowledge of local care pathways and post- Mean (s.d.) 18.60 (9.72) diagnostic services). The final survey contained 19 statements that Range <1–48 respondents rated on a scale ranging from one (‘not at all confident’) Location of psychiatry practice, n (%) to ten (‘extremely confident’). Scores from each item were North East 11 (6.4) North West 42 (24.4) averaged to yield a mean self-efficacy score (higher scores reflected Yorkshire and the Humber 18 (10.5) greater self-efficacy). The scale showed excellent internal consistency East Midlands 12 (7.0) (α = 0.96). West Midlands 7 (4.1) The survey ended with optional free-text boxes, asking respon- East of England 7 (4.1) dents for their views on (a) their confidence in working with their London 14 (8.1) autistic patients; (b) what they feel works well and what could be South East 14 (8.1) improved in this regard; (c) the training that they felt would help South West 13 (7.6) Wales 10 (5.8) them more effectively work with their autistic patients; and (d) Scotland 21 (12.2) any other information they would like to add on the topic. Northern Ireland 3 (1.7) Ethical approval was granted by the Research Ethics Committee Sector of work, n (%) at UCL Institute of Education, University College London (REC Clinical, public 153 (89.0) 959). All participants provided informed consent to take part. Clinical, private 2 (1.2) Data were collected anonymously. Clinical, public and private 11 (6.4) Non-clinical practice – Other 6 (3.5) Participants Role, n (%) In total, 229 psychiatrists responded to the online survey. Responses Independent practitioner 6 (3.5) Part of multidisciplinary team 165 (95.9) were not considered for those who were not currently practising Other 1 (0.6) psychiatrists in the UK (n = 50) or did not progress past the Consultant, n (%) demographic information of the survey (n = 7). The final 172 Yes 159 (92.4) respondents (Table 1) had a broadly even gender split, with an No 13 (7.6) average age of 48 years and were largely from a White ethnic Speciality, n (%) background (n = 120; 69.8%). Almost all had qualified as Addictions 4 (2.3) Child and adolescent 40 (23.3) psychiatrists in the UK (n = 158; 91.9%) and the geographical distri- Eating disorders 3 (1.7) bution of their practice was diverse. Most worked in the public Forensic 4 (2.3) health sector (n = 153; 89.0%), as consultants (n = 159; 92.4%) in General adult 59 (34.3) multidisciplinary teams (n = 165; 95.9%), and had a range of Old age 12 (7.0) specialities. Respondents had spent an average of 19 years practis- Psychotherapy 2 (1.2) ing, with almost two-thirds (n = 106; 61.6%) spending more than Psychiatry of learning disabilities 29 (16.9) 5 years in their current role. They reported an average of Other 19 (11.0) Practice, n (%) 19 patient-contact hours each week. Community mental health team 86 (50.0) Out-patient clinic 52 (30.2) Data analysis Hospital ward 43 (25.0) General practice surgery 1 (0.6) Quantitative data are largely presented descriptively (n, %), with Other 34 (19.8) statistical analyses used to examine group differences (Mann Years in current role, n (%) Whitney U-tests) and relationships between variables (using bivari- <1 22 (12.8) ate correlational or stepwise regression analyses). Participants’ 1–5 44 (25.6) qualitative responses were analysed using thematic analysis. We More than 5 106 (61.6) adopted an inductive approach (i.e. without integrating the Hours per week patient contact Mean (s.d.) 19.23 (8.60) themes within any pre-existing coding schemes, or preconceptions Range 2–41 of the researchers), within an essentialist framework (to report the experiences, meanings and reality of the participants). This involved three authors independently familiarising themselves with the data, and reviewing the transcripts to develop an initial themes and subthemes using a semantic approach (identifying set of themes and subthemes. The authors reviewed the results on themes at a ‘surface’ level, without theorising beyond the actual several occasions, to resolve discrepancies and decide on the final content of the data). Downloaded from https://www.cambridge.org/core. 04 Jul 2021 at 18:56:41, subject to the Cambridge Core terms of use. Autism spectrum and psychiatrists’ knowledge, attitudes and experiences Table 2 Psychiatrists correct responses to items on the Knowledge of Autism Scale (n = 162) Psychiatrists giving a correct Item Answer (true/false) response, n (%) An autism diagnosis cannot be made before a child is 3 years of age False 99 (61.1) A child failing to respond to their name when called can be an early sign of autism True 118 (72.8) A lack of eye contact is necessary for a person to receive a diagnosis of autism False 157 (96.9) Research has shown that the measles, mumps, rubella vaccine is not a direct cause of autism True 153 (94.4) Autism is caused by a lack of bonding between mother and child False 159 (98.1) Autism is a rare condition, affecting only 15 per 10 000 individuals in the UK False 150 (92.6) Autism cannot be diagnosed in adulthood False 161 (99.4) The behaviours characteristic of autism are usually mild and transient, so specific intervention False 156 (96.3) is not usually required The prevalence of autism is greater in children than in adults False 131 (80.9) Younger siblings of children with autism have a higher probability (approximately 20%) of being True 142 (87.7) diagnosed with autism Most people with autism also have intellectual disabilities False 113 (69.8) Females are less likely to be diagnosed with autism than males True 155 (95.7) People with autism feel no empathy or affection False 156 (96.3) Children with autism can be interested in social interaction True 153 (94.4) More than half of people diagnosed with autism do not talk False 151 (93.2) Children with autism can show unusual reactions to certain smells and sounds True 160 (98.8) Additional mental health conditions (for example, anxiety, depression) are more prevalent in True 158 (97.5) individuals diagnosed with autism than in the general population Most children with autism eventually outgrow autism False 159 (98.1) Independent living is not possible for people with autism False 161 (99.4) The behaviours in autism can only be managed with medication False 161 (99.4) People with autism always display challenging behaviours False 156 (96.3) Children with autism tend to learn better when things are presented in a visual format True 135 (83.3) autism training, 76.5% (n = 114) reported that this was ‘quite’ or Results ‘very’ useful in preparing them to work with their autistic patients, with 19.5% (n = 29) reporting that the training was ‘not very’ useful Current practice when working with patients on the and 4.0% (n = 6) reporting that it was ‘not at all’ useful. autism spectrum Of the 172 respondents, just over a quarter reported having children Personal experience of autism on the autism spectrum under their care (n = 49; 28.5%). Of these, A total of 81 respondents (47.1%) reported some personal experi- 38.8% (n = 19) had fewer than 10, 28.6% (n = 14) had between 11 ence of autism, either through being autistic themselves (n = 2), and 30 and 32.7% (n = 16) had more than 30. A higher number having an autistic child (n = 12) or a relative (n = 36), colleague or (n = 120; 69.8%) reported having at least one autistic adult in their friend (n = 32) on the autism spectrum. care. Of these, 55.0% (n = 66) had fewer than 10, 27.5% (n = 33) had between 11 and 30 and 17.5% (n = 21) had more than 30. In Knowledge of autism the past year, 86.6% (n = 149) of respondents had been approached by at least one patient about a suspected autism diagnosis, with A total of 162 respondents completed the Knowledge of Autism 33.7% (n = 58) having been approached by more than ten. Most Scale, scoring highly (mean 91.2% correct; s.d. = 9.3, range 31.8– felt that this number had increased since beginning their profes- 100.0%) (Table 2). Respondents’ scaled knowledge scores expressed sional career (n = 137; 79.7%), 19.2% (n = 33) felt it had remained as a percentage of the total number of questions asked (mean 90.6%; steady, and 1.2% (n = 2) felt it had decreased. s.d. = 9.7; range = 28.6–100.0%) were not significantly associated with their age, r(162) = 0.04, P = 0.64, number of years practising as a psychiatrist, r(162) = 0.02, P = 0.76 or total number of autistic Training on autism patients currently under their care, r(162) = 0.05, P = 0.50. Just over two-thirds of respondents (n = 119; 69.2%) reported Mann–Whitney U-tests showed that scaled knowledge scores receiving specific training about autism during their primary were significantly higher for psychiatrists with personal experience medical degree, foundation degree or specialist psychiatric training of autism (median 20.95) that those without (median 19.90), (of these, 92 (77.3%) received this during specialist training). Many U = 2570, P = 0.02; but there was no significant difference in (n = 120, 69.8%) received specific training (for example via continu- scores between psychiatrists who had received training on autism ing professional development) on autism since qualifying as a and those who had not, U = 1302.5, P = 0.70. psychiatrist. This included diagnostic training, on specific diagnos- tic tests such as the Autism Diagnostic Observation Schedule 12 13 Diagnosing autism – processes and pathways (ADOS), Autism Diagnostic Interview-Revised (ADI-R), Developmental, Dimensional and Diagnostic Interview and A total of 111 psychiatrists reported that they were involved in diag- Diagnostic Interview for Social and Communication disorders nosing patients on the autism spectrum, and 109 provided informa- (DISCO); but also intervention training (for example cognitive– tion about waiting times: 55 (50.5%) reported having a waiting list behavioural therapy (CBT) for autistic patients) and generic for autism diagnostic assessments and, of these, 21.8% (n = 12) autism awareness courses. A significant minority of respondents had an average wait time of 1–3 months and 78.2% (n = 43) had (30.8%, n = 53) reported that they received no training on autism an average waiting time of over 3 months. during their primary medical or foundation degree or specialist psy- Of the 111 psychiatrists involved in diagnosis, the majority chiatric training. Of the 149 psychiatrists who had received some (n = 89; 80.2%) reported that they would refer to ICD diagnostic Downloaded from https://www.cambridge.org/core. 04 Jul 2021 at 18:56:41, subject to the Cambridge Core terms of use. Crane et al Table 3 Mean and mode scores for each item on the self-efficacy scale Mean score Item (s.d.) Range Mode score Recognising the signs and symptoms of autism in children 5.87 (2.70) 1–10 5.00 Recognising the signs and symptoms of autism in adults 6.83 (1.80) 1–10 6.00 Recognising the signs and symptoms of autism in boys and men 7.10 (1.92) 1–10 8.00 Recognising the signs and symptoms of autism in girls and women 6.38 (1.94) 1–10 7.00 Recognising the signs and symptoms in individuals with good spoken language and no apparent intellectual difficulties 6.73 (2.12) 1–10 8.00 Recognising additional psychiatric disorders (e.g. anxiety, depression) in autistic people who access my service 7.61 (1.80) 2–10 8.00 Managing additional psychiatric disorders (e.g. anxiety, depression) in autistic people who access my service 7.22 (2.10) 1–10 8.00 Recognising additional neurodevelopmental conditions (e.g. ADHD, OCD) in autistic people who access my service 6.94 (2.15) 1–10 9.00 Managing additional neurodevelopmental conditions (e.g. ADHD, OCD) in autistic people who access my service 6.60 (2.29) 1–10 8.00 Contributing effectively to helping services to manage the care of children on the autism spectrum 5.07 (2.94) 1–10 1.00 Contributing effectively to helping services manage the care of adults on the autism spectrum 5.66 (2.46) 1–10 5.00 Assessing the strengths, needs and aspirations of autistic people who access my service 6.48 (2.30) 1–10 8.00 Communicating with patients about a suspected diagnosis of autism 6.92 (2.21) 1–10 8.00 Knowing to whom to refer my patients I suspect of having autism 7.43 (2.55) 1–10 10.00 Knowing local care pathways for patients to access diagnostic assessments 7.43 (2.75) 1–10 10.00 Knowing local post-diagnostic services to refer patients who have received an autism spectrum diagnosis 6.13 (2.93) 1–10 8.00 Knowing the relevant care pathways/services for people on the autism spectrum 6.16 (2.76) 1–10 8.00 Knowing which community resources in my area are available for autistic children and/or adults 5.94 (2.72) 1–10 8.00 Identifying stress in the parents and carers of autistic people who access my service 7.00 (2.22) 1–10 8.00 Total 6.35 (2.43) ADHD, attention–deficit hyperactivity disorder; OCD, obsessive–compulsive disorder. a. Scores range from 1 (‘not at all confident’)to10(‘extremely confident’). criteria when considering possible autism, and 56.8% (n = 63) spectrum, psychiatrists often reported using a range of other 17,18 reported referring to DSM criteria. Most psychiatrists (n = 98; assessments, including those indexing co-occurring psychiatric 88.3%) found these diagnostic criteria ‘somewhat’, ‘very’ or conditions (n = 76; 68.5%), co-occurring neurodevelopmental con- ‘extremely’ useful when making diagnostic decisions (only 13 ditions (n = 62; 55.9%), functional ability (n = 62; 55.9%), medical psychiatrists (11.7%) found them ‘a little’ or ‘not at all’ useful). problems (n = 59; 53.2%), cognitive ability (such as intelligence Of the 110 psychiatrists involved in autism diagnosis, 69.1% tests; n = 39; 35.1%) and mental capacity (n = 32; 28.8%). A total (n = 76) had experienced situations where a child or adult did not of 16.2% of psychiatrists (n = 18) who were involved in autism meet the formal diagnostic criteria or threshold for autism on diagnosis reported using all of these additional assessments, with diagnostic tools, but their clinical judgement suggested otherwise 9% (n = 10) not using any formal assessment. (for example those showing atypical presentations of autism, such as women and girls on the autism spectrum). Of these, 36.8% (n Self-efficacy = 28) reported that they would give the individual a diagnosis of autism in this instance. The remainder provided alternative Respondents’ confidence in their ability to screen, diagnose and options, for example: offering an alternative diagnosis (such as aut- manage their patients on the autism spectrum ranged widely istic traits or features); using additional diagnostic tools to confirm (Table 3). Correlational analyses showed that higher self-efficacy their diagnoses; or referring the patient to an autism specialist team. scores were significantly related to better scaled knowledge of They also considered the utility of the diagnosis for the individual autism scores, r(158) = 0.26, P = 0.001 and the total number of and their family when deciding whether to give an autism diagnosis. autistic patients currently in their care, r(159) = 0.44, P < 0.001. In total, 111 of the psychiatrists involved in diagnosing autism Self-efficacy scores were not related to years practising as a psych- answered questions about their protocol for autism diagnosis and iatrist, r(159) = −0.005, P = 0.95. Mann–Whitney U-tests revealed the measures they use. Of these, 78.4% (n = 87) reported following that self-efficacy scores were significantly higher for psychiatrists a standardised protocol for autism diagnosis, often drawn from who had received training on autism (median 7.05) compared commonly used diagnostic instruments (such as the ADOS, ADI- with those who had not (median 4.68), U = 523, P < 0.001; yet 19,20 R) and local and/or national guidance. Psychiatrists also there was no significant difference in self-efficacy scores between reported using clinical judgement (n = 78; 70.3%), clinical observa- psychiatrists who had personal experience of autism and those tions (n = 71; 64.0%), parent report (n = 66; 59.5%), standardised who did not, U = 2833, P = 0.17. structured interview (n = 38; 34.2%), standardised observation mea- sures (n = 26; 23.4%) and DSM or ICD diagnostic criteria (n = 61; Predicting psychiatrists’ self-efficacy 55.0%). 44.1% of psychiatrists (n = 49) reported using a combin- ation of all of the above to inform their diagnosis. Multiple regression analysis was used to predict psychiatrists’ per- The most commonly used screening measure was the freely ceived self-efficacy, with years spent practising as a psychiatrist, available Autism Quotient (n = 43; 38.7%), with a wide number the number of autistic patients currently under their care, training of other screening tools (including the Social Communication on autism (either during their initial training or later in their Questionnaire, the Ritvo Autism Asperger Diagnostic Scale – careers) and personal experience of autism entered stepwise into 23 24 Revised, the Social Responsiveness Scale and the Autism the model, together with scaled knowledge scores. As shown in Behaviour Checklist being infrequently used. Almost half of the Table 4, respondents’ total number of autistic patients currently psychiatrists (n = 51; 45.9%) reported routinely using the ADOS- under their care as well as autism training were significant 2, making this the most commonly used diagnostic measure, fol- predictors, together explaining 24% of the variance in psychiatrists’ lowed by the ADI-R (n = 41; 36.9%) and the DISCO (n = 20; self-efficacy scores. There were no other significant predictors (all 18.0%). When assessing patients potentially on the autism Ps > 0.07), final model: F(2, 159) = 23.04, P < 0.001. Downloaded from https://www.cambridge.org/core. 04 Jul 2021 at 18:56:41, subject to the Cambridge Core terms of use. Autism spectrum and psychiatrists’ knowledge, attitudes and experiences Lack of clarity around diagnostic and support pathways, including lack Table 4 Summary of hierarchical regression analysis predicting psy- of cross-agency working chiatrists’ self-efficacy scores Psychiatrists further complained of a lack of clarity around diagnos- b (s.e.) β tic and support pathways, including lack of cross-agency working, Step 1 expressing concern that there is ‘no local guidance for diagnosis Constant 5.36 (0.29) – Number of patients on the autism spectrum 0.28 (0.06) 0.37* or management of autism and no agreed screening or assessment currently under their care pathways’. For many, this meant that services were ‘very poorly Step 2 signposted and confusing’, and ‘sometimes difficult to access’. Constant 3.77 (0.46) – Psychiatrists noted that ‘working effectively with other agencies pre- Number of patients on the autism spectrum 0.27 (0.05) 0.36* sents major challenges’ and stressed the need for a ‘more joined up currently under their care approach between social care, education and medical colleagues’; Autism training 1.83 (0.42) 0.30* currently, they felt a ‘big gap’ exists, ‘with many children falling in 2 2 a. R = 0.14 for Step 1, ΔR = 0.09 for Step 2 (Ps < 0.001). * P < 0.001. between… and therefore not getting the help that they need’. Some psychiatrists touched upon the idea of developing a ‘specialist service’ for autism diagnosis and support which ‘understands their needs’ and could ‘serve patients best’. Yet, others argued that ‘frag- Qualitative analysis of open-ended responses mented commissioning is not helpful’ suggesting that autism ser- Psychiatrists reported that working with their autistic patients was vices should be ‘within the mainstream services of adult mental ‘very, very rewarding’ work, and that ‘making a good assessment health and not in isolation’ because of co-occurring developmental and providing appropriate psychoeducation can make great differ- and mental health conditions. ence to the lives of these families’. Another commented that ‘the variety is immense’ and working with autistic patients offers ‘an ‘Commissioning gap’ for services for autistic adults without mental insight into a completely different way of looking at the world, it health issues or intellectual disability is fascinating’. Despite these positive sentiments, we identified Psychiatrists identified a ‘commissioning gap’ for services for seven themes, describing a range of systemic and autism-specific autistic adults without mental health issues or intellectual disability. challenges to delivering the most effective care and support (Fig. 1). They felt that provision of services for these autistic adults and young people was ‘markedly lacking’, with one commenting that ‘some see [individuals without a learning disability or mental Lengthy waiting lists mean a lack of timely support for patients health comorbidity] as not the remit of psychiatrists’. This meant that those ‘without significant social care needs or psychiatric Psychiatrists expressed concern that lengthy waiting lists mean a comorbidity [were] left without any support’– they may be seen lack of timely support for patients, with many speaking of waiting as ‘higher functioning’ and as such are not ‘important enough’,so periods during which the patient was not receiving any help or do not receive the support and services they require. Despite services support: ‘we need timely access to diagnostic services. Currently being hard to access without additional difficulties, psychiatrists we have a 1-year wait for assessment and during that 1-year wait also reported significant issues meeting the needs of those with we are lost as to how to help most persons’. One respondent referred these difficulties, commenting that mental health services are ‘reluc- to these waiting times as ‘unacceptably long’ and emphasised a need tant to work with autistic individuals’. They highlighted the lack of for ‘more personnel involved in multiagency assessment, identifica- ‘co-ordinated mental health services’ for those with autism and tion and management’. mental health problems, noting that such patients ‘can often be highly challenging to work with and staff are not trained appropri- ately’. As a result, there was uncertainty as to who could help them: Demand outstrips existing, chronically underresourced services and ‘the local autism team provides social care only and are hesitant to supports joint work if there is a potential mental health issue’. Meanwhile, In line with these comments, psychiatrists reported that demand there were a ‘lack of therapists who have experience and under- outstrips existing, chronically underresourced services and sup- standing of how to adapt CBT for young people and adults with ports, highlighting a broader issue in terms of healthcare resources. ASC [autism spectrum condition] and depression/anxiety’. The As one respondent noted: ‘services for general adult psychiatry are general sentiment was that there are ‘few professionals who feel con- woefully underprovided – autism is low on the pecking order. There fident managing [mental health difficulties] in autism and no pro- is no plan for service provision in general, never mind autism vision for those who show difficult behaviours’, resulting in them support’. Many reported frustration over the lack of staff at all ‘apologising a lot’. The respondents called for ‘greater acceptance’ levels in their services, which they felt ‘affects wait times and and ‘greater overall knowledge’ of autism in mental health services consistency for this group of patients’, as their time is ‘spent on and ‘improved recognition [and] intervention for mental health tasks that other [administrative] staff could do’. Psychiatrists comorbidities’ across the board. stressed that this had seriously negatively effects on the care they could provide as they ‘never [have] enough resources for Severely limited post-diagnostic support and services for patients and patients who should be getting help’. These generic problems their families were felt to be compounded for autistic patients as the diagnostic process is often lengthy: ‘[we need] more time and resources to These commissioning gaps contributed to a general lack of support assess these people, as it is very time consuming to do properly’. more broadly, with many psychiatrists raising the severely limited Further, as a result of increased recognition, ‘autism cases are rock- post-diagnostic support and services for patients and their families eting’ and ‘whilst increased recognition and understanding is as a key issue. Psychiatrists reported being ‘concerned’ and ‘fru- helpful, this has increased demand on services that already cannot strated’ by the lack of post-diagnostic services in place, with one cope’. One psychiatrist explained: ‘we are getting three referrals spe- commenting: ‘At the moment, people can be assessed for autism, cifically for autism diagnosis or management per week… it’s all but that’s where the road ends.’ Even if some services exist, chaos’. another psychiatrist observed: ‘I have knowledge of the limited Downloaded from https://www.cambridge.org/core. 04 Jul 2021 at 18:56:41, subject to the Cambridge Core terms of use. Crane et al Lengthy waiting lists mean a lack of timely support for patients Demand outstrips Tensions regarding the chronically under- position of autism in resourced services and society supports Systemic and autism- specific challenges to delivering effective care and support Need for better Lack of clarity around understanding of diagnostic and support autism, including for pathways, including professionals beyond lack of cross-agency psychiatry working ‘Commissioning gap’ Severely limited post- for services for autistic diagnostic support and adults without mental services for patients health issues or and families intellectual disability Fig. 1 The seven themes identified, which describe a range of systemic and autism-specific challenges to delivering the most effective care and support. options for post-diagnostic support that exist in my locality. The dif- have difficulty grasping concepts’. The respondents highlighted ficulty is that there are not enough (capacity or range) options avail- that ‘colleagues and trainees who haven’t had adequate clinical able’. As a result of the lack of National Health Service (NHS) exposure particularly to “typical cases” may misunderstand what follow-up services available, some psychiatrists reported turning is meant by some of the features’, and that this ‘lack of understand- to charities to help, however, they recognised that ‘there are ing’ could lead to misdiagnosis or failure to recognise ‘various limited funds to support [charitable] organisations’ so they could comorbid difficulties which often overlap with ASC’. Overall this only help a small number. Respondents called for more investment can result in ‘challenges in delivering a satisfactory service’ to and resources for post-diagnostic support services so that indivi- autistic individuals, thus they called for more training ‘all round’ duals have ‘easier access to support across the lifespan’, both to improve patient care. within the health service and for ‘better community support’ so Psychiatrists who were more confident recognised that personal that autistic individuals could ‘integrate properly into mainstream and professional experience helps. Psychiatrists who had regularly schools’ and receive help ‘entering employment’. The lack of post- seen autistic individuals as part of their ‘day-to-day’ job were diagnostic support may exacerbate the constraints to care already more confident supporting them. One psychiatrist recognised that noted: ‘The lack of access to specific services for people with because of their experience, they were ‘certainly more [confident] autism has caused repeated readmissions in many of my patients. than [they] would have been earlier in [their] work career’. A few They do not have the right support in the community’. psychiatrists reported that they ‘undertook specific training’ as they recognised a need for autism awareness in their professional practice: ‘I have had a special interest in the condition as I was Need for better understanding of autism, including for professionals aware the diagnosis may have been missed in several patients on beyond psychiatry my case load’. Others attributed their knowledge to personal experi- Many psychiatrists emphasised the need for better understanding of ence of autism, for example having a child on the autism spectrum: autism, including for professionals beyond psychiatry. They stressed ‘A lot of my knowledge comes from carrying out additional reading that there needed to be ‘greater specialist training for all multidiscip- and study due to having a child with autism myself, rather than linary team staff [as] generally confidence is low with autism cases’ through what I learnt during training’. and that ‘better general awareness’ was needed in ‘all professional groups’. One psychiatrist commented that colleagues seemed ‘very Tensions regarding the position of autism in society reluctant or ignorant in dealing with people with autism’, and another found that ‘colleagues both medical and non-medical Psychiatrists reported tensions regarding the position of autism in [are] relatively unsympathetic to patients with the condition and society, and whether it should be viewed as a disability or a Downloaded from https://www.cambridge.org/core. 04 Jul 2021 at 18:56:41, subject to the Cambridge Core terms of use. Autism spectrum and psychiatrists’ knowledge, attitudes and experiences difference. As summarised by one respondent: ‘autism, like some more prominent in the Mental Health Minimum Data Set for other diagnostic entities, occupies an interesting position in England (collecting patient-level data on children, young people society, in that it is defined in the diagnostic manuals as having and adults in contact with mental health, intellectual disabilities areas of impairment (akin to deficit model), yet for some autistic or autism services). Likewise, since April 2018, data have been col- individuals this is/feels oppressive and disabling/disablist’. This lected on autism diagnosis waiting times. The goal is that these poses a difficult balance for psychiatrists as they ‘look hard for the initiatives will aid in service and delivery planning and start to things that children cannot do and the social skills that are address unwarranted variance in autism support and services missing’; however, this can result in diagnoses being ‘disabling’ as across England. The current findings will further inform these parents have lower expectations of what their child is able to do and future Royal College of Psychiatrists initiatives to help (‘he can’t do that, he’s autistic’). Some therefore stressed a need to improve psychiatrists’ confidence in working with their autistic ‘ensure that we speak about the positives and strengths of young patients. people with autism’. For one psychiatrist, it was unclear whether diagnosis was actually ‘necessary or helpful in all cases’ considering Co-occurring conditions some people have ‘developed strategies to enable them to function Our sample of psychiatrists highlighted specific challenges meeting well without distress’. However, another highlighted that ‘those the needs of currently underserved groups of the population on the with LD [learning disability] and autism may be unintentionally autism spectrum, such as autistic adults with co-occurring mental excluded’ by this as ‘they go against growing sentiment that health conditions and/or intellectual disabilities. They noted that autism cannot or should not be characterised by overt difficulty/dis- both mental health services and autism-specific services were reluc- ability’, making it hard to strike a fair balance that meets the needs of tant to work with autistic patients with mental health problems. this very heterogeneous group without being overly pathologising in These reports corroborate those of autistic adults, who have the process. voiced their concerns at the lack of clear pathways when seeking help for their mental health problems. As up to 70–80% of people on the autistic spectrum have additional psychiatric diagno- Discussion 28,29 ses, and autistic adults without intellectual disabilities are nine times as likely to die by suicide, it is essential that services are Main findings well-equipped to support autistic people who have co-occurring The psychiatrists who participated in this study reported that they mental health diagnoses. Together, these findings will inform the commonly encountered patients on the autism spectrum as part of Royal College of Psychiatrists’ initiatives to ensure that autism their professional roles, and acknowledged that the number of does not become a diagnosis of exclusion and that mental health ser- autistic patients on their case-loads was increasing. This finding vices are able to make person-centred reasonable adjustments to demonstrates the importance and timeliness of the current survey, ensure autistic people who have mental health conditions have which – to our knowledge – is the first to exclusively survey psychia- equity of access and service with non-autistic people. trists about autism. Psychiatrists reported working with patients on the autism spectrum to be a rewarding part of their role. Most had The issue of specialist services received training on autism, which they found to be useful, and their knowledge about autism was high, particularly for those with One further tension in the current study focused on whether there a personal connection to autism. Psychiatrists’ self-efficacy varied should be specialist services for patients on the autism spectrum, or in relation to different aspects of their role, but higher levels of whether existing services should be more inclusive of autistic self-efficacy were linked to greater knowledge, experience and train- patients. Although our sample of psychiatrists often discussed ing in autism. Analyses of open-ended data highlighted a number of these possibilities as a dichotomy, it may be that the adoption of systemic and autism-specific factors that psychiatrists felt challenged both models of service delivery could be advantageous. For their ability to provide the most effective care and support for their example, specialist diagnostic assessment may be helpful to identify autistic patients. the specific strengths, needs and aspirations of the patient, provide With high levels of knowledge, experience and training in autism initial post-diagnostic support and serve as a consultation or liaison (all of which were related to increased self-efficacy), the psychiatrists model to primary care services. Yet, such specialist services should surveyed in this study had good knowledge of diagnostic tools and not prevent autistic people from being able to access generic processes, and used these in conjunction with clinical judgement primary care services, as well as specialist physical health, mental to best meet the needs of their patients. Notwithstanding, they health or intellectual disability services, without any more barriers reported several systemic factors (largely perceived to be outside of or restrictions than those that apply to people who are not autistic. their control) that challenged their ability to work effectively with Whatever the model of service delivery, there will be the need to their autistic patients. In relation to autism diagnosis – a key area make reasonable adjustments to ensure that access for autistic in which psychiatrists are involved – the current findings echo patients is both meaningful and equitable. One key way to achieve 8,26 1,26 those reports from parents and autistic adults in highlighting this is to involve members of the autism community in service plan- lengthy waiting times and limited post-diagnostic support for chil- ning, to ensure that the resulting services are respectful, accessible 9,31 dren and adults on the autism spectrum. They also confirm the and patient-centred. lack of clarity regarding diagnostic pathways for patients on the autism spectrum, as reported by other UK professionals involved Limitations 7,9 in the autism diagnostic process. This survey represents the first to focus exclusively on psychiatrists’ knowledge, experience and confidence in working with their Initiatives to improve support and services patients on the autism spectrum. It is not, however, without its lim- The Royal College of Psychiatrists has implemented several mea- itations. First, although 28.5% of respondents had children on the sures to begin to address such issues. For example, the Royal autism spectrum on their case-load, the majority (69.8%) had autis- College of Psychiatrists recently worked with the Department of tic adults as their patients, which may have had an impact on some of Health, NHS Digital and other partners to ensure that autism was the findings of the survey (for example regarding their reports of a Downloaded from https://www.cambridge.org/core. 04 Jul 2021 at 18:56:41, subject to the Cambridge Core terms of use. Crane et al 10 Stone WL. Cross-disciplinary perspectives on autism. J Pediatr Psychol 1987; relative lack of confidence in supporting children on the autism 12: 615–30. spectrum). Second, while the sample represented a high number 11 Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol of psychiatrists relative to other research that has included this pro- 2006; 3:77–101. 7,26 fessional group, the response rate was fairly low: with an estimate 12 Lord C, Rutter M, DiLavore PC, Risi S, Gotham K, Bishop SL. Autism Diagnostic of around 7000 psychiatrists practising in the UK, approximately Observation Schedule (2nd edn). Western Psychological Services, 2012. 2.5% participated in this survey. Third, given that just under half 13 Lord C, Rutter M, Le Couteur A. Autism Diagnostic Interview-Revised: a revised of respondents reported having some personal connection with version of a diagnostic interview for caregivers of individuals with possible per- vasive developmental disorders. J Autism Dev Disord 1994; 24: 659–85. autism (as found in research on UK GPs), the sample may also be 14 Skuse D, Warrington R, Bishop D, Chowdhury U, Lau J, Mandy W, et al. The biased, with those with a keen interest in autism being more likely developmental, dimensional and diagnostic interview (3di): a novel computer- to respond. This limitation suggests that we must exert caution in ized assessment for autism spectrum disorders. J Am Acad Child Adolesc interpreting these results but also, critically, that we may be under- Psychiatry 2004; 43: 548–58. estimating some of the issues at hand. 15 Wing L, Leekam SR, Libby SJ, Gould J, Larcombe M. The diagnostic interview for With autism now listed as an NHS priority in England, and with social and communication disorders: background, inter-rater reliability and clinical use. J Child Psychol Psychiatry 2002; 43: 307–25. a Royal College of Psychiatrists Championing Autism campaign 16 World Health Organization. The ICD-10 Classification of Mental and Behavioural currently running to July 2020, there is an opportunity to enact Disorders: Diagnostic Criteria for Research. World Health Organization, 1992. meaningful changes to the way psychiatry supports children, 17 American Psychiatric Association. Diagnostic and Statistical Manual of Mental young people and autistic adults in England. Investment in more Disorders: DSM-IV-TR. American Psychiatric Association, 1994. effective – and particularly, local – services should contribute to a 18 Association AP. Diagnostic and Statistical Manual of Mental Disorders (5th edn). reduced need for interactions with psychiatric services, especially American Psychiatric Association, 2013. in times of crisis, and ultimately serve to improve the mental 19 National Institute for Health and Care Excellence. Autism: Recognition, Referral well-being of people on the autism spectrum and their families. and Diagnosis of Children and Young People on the Autism Spectrum. CG128. NICE, 2011. 20 National Institute for Health and Care Excellence. Autism: Recognition, Referral, Laura Crane , Associate Professor, Centre for Research in Autism and Education, Diagnosis and Management of Adults on the Autism Spectrum. CG142. NICE, UCL Institute of Education, UK; Ian Davidson, RCPsych Autism Champion and Consultant Psychiatrist, Royal College of Psychiatrists; and ASD Service, Cheshire and 21 Baron-Cohen S, Wheelwright S, Skinner R, Martin J, Clubley E. The autism-spec- Wirral Partnership NHS Foundation Trust, UK; Rachel Prosser, Undergraduate trum quotient (AQ): evidence from asperger syndrome/high-functioning aut- Placement Student, Centre for Research in Autism and Education, UCL Institute of Education, UK; Elizabeth Pellicano, Professor of Educational Studies, Department of ism, malesand females, scientists and mathematicians. J Autism Dev Disord Educational Studies, Macquarie University, Australia 2001; 31:5–17. 22 Rutter M, Bailey A, Lord C. The Social Communication Questionnaire. Western Correspondence: Laura Crane, Centre for Research in Autism and Education (CRAE), UCL Institute of Education, University College London, London WC1H 0NU, UK. Psychological Services, 2003. Email: [email protected] 23 Ritvo RA, Ritvo ER, Guthrie D, Ritvo MJ, Hufnagel DH, McMahon W, et al. The Ritvo Autism Asperger Diagnostic Scale-Revised (RAADS-R): a scale to assist First received 22 Sep 2018, final revision 12 Feb 2019, accepted 17 Feb 2019 the diagnosis of autism spectrum disorder in adults: an international validation study. J Autism Dev Disord 2011; 41: 1076–89. 24 Constantino JN, Gruber CP. Social Responsiveness Scale - Second Edition (SRS-2). Western Psychological Services, 2012. 25 Krug DA, Arick J, Almond P. Behavior checklist for identifying severely handi- capped individuals with high levels of autistic behavior. J Child Psychol References Psychiatry 1980; 21: 221–9. 26 Crane L, Batty R, Adeyinka H, Goddard L, Henry LA, Hill EL. Autism diagnosis in the United Kingdom: perspectives of autistic adults, parents and professionals. 1 Jones L, Goddard L, Hill EL, Henry LA, Crane L. Experiences of receiving a diag- J Autism and Dev Disord 2018; 48: 3761–72. nosis of autism spectrum disorder: a survey of adults in the United Kingdom. J Autism Dev Disord 2014; 44: 3033–44. 27 Crane L, Adams F, Harper G, Welch J, Pellicano E. ‘Something needs to change’: mental health experiences of young autistic adults in England. Autism 2019; 23: 2 Heidgerken AD, Geffken G, Modi A, Frakey L. A survey of autism knowledge in a 477–93. health care setting. J Autism Dev Disord 2005; 35: 323–30. 28 Lever AG, Geurts HM. Psychiatric co-occurring symptoms and disorders in 3 Imran N, Chaudry MR, Azeem MW, Bhatti MR, Choudhary ZI, Cheema MA. A sur- young, middle-aged, and older adults with autism spectrum disorder. J vey of autism knowledge and attitudes among the healthcare professionals in Autism Dev Disord 2016; 46: 1916–30. Lahore, Pakistan. BMC Pediatrics 2011; 11: 107. 29 Simonoff E, Pickles A, Charman T, Chandler S, Loucas T, Baird G. Psychiatric dis- 4 Rhoades RA, Scarpa A, Salley B. The importance of physician knowledge of aut- orders in children with autism spectrum disorders: prevalence, comorbidity, ism spectrum disorder: results of a parent survey. BMC Pediatrics 2007; 7: 37. and associated factors in a population-derived sample. J Am Acad Child 5 Taylor LJ, Eapen V, Maybery MT, Midford S, Paynter J, Quarmby L, et al. Adolesc Psychiatry 2008; 47: 921–9. Diagnostic evaluation for autism spectrum disorder: a survey of health profes- 30 Hirvikoski T, Mittendorfer-Rutz E, Boman M, Larsson H, Lichtenstein P, Bölte S. sionals in Australia. BMJ Open 2016; 6: e012517. Premature mortality in autism spectrum disorder. Br J Psychiatry 2016; 208: 6 Ward SL, Sullivan KA, Gilmore L. Practitioner perceptions of the assessment and 232–8. diagnosis of autism in Australia. Aust Psychol 2016; 51: 272–9. 31 Nicolaidis C, Raymaker DM, Ashkenazy E, McDonald KE, Dern S, Baggs AE, et al. 7 Rogers CL, Goddard L, Hill EL, Henry LA, Crane L. Experiences of diagnosing aut- ‘Respect the way I need to communicate with you’: healthcare experiences of ism spectrum disorder: a survey of professionals in the United Kingdom. adults on the autism spectrum. Autism 2015; 19: 824–31. Autism 2016; 20: 820–31. 32 Royal College of Psychiatrists. Census 2017: Workforce Figures for Consultant 8 Crane L, Chester JW, Goddard L, Henry LA, Hill E. Experiences of autism and Speciality Doctor Psychiatrists 2017. Royal College of Psychiatrists, 2017 diagnosis: a survey of over 1000 parents in the United Kingdom. Autism (https://www.rcpsych.ac.uk/improving-care/workforce/our-workforce-census). 2016; 20: 153–62. 9 Unigwe S, Buckley C, Crane L, Kenny L, Remington A, Pellicano E. GPs’ confi- dence in caring for their patients on the autism spectrum: an online self-report study. Br J Gen Pract 2017; 67: e445–52. Downloaded from https://www.cambridge.org/core. 04 Jul 2021 at 18:56:41, subject to the Cambridge Core terms of use.

Journal

BJPsych Open – Unpaywall

Published: Apr 5, 2019

There are no references for this article.