Psychiatric co-morbidity in Autism: Using a UK-based population-based study to assess the burden of psychiatric comorbidity in individuals with Autism and understand the environmental factors associated with poorer mental health outcomes.

The University of Bristol (UoB) requires the Adult Psychiatric Morbidity Survey (APMS) data to investigate the level of Psychiatric comorbidity for people with Autism living in the UK.

Autism spectrum disorders are characterised by early-onset difficulties in social interaction, communication and restricted, repetitive patterns of interests and behaviour. Autism is now thought to affect at least 1% of the population although estimates of prevalence have increased over the last two decades. Yet there is still limited understanding of the adult outcomes of these conditions. The largest currently available population-based studies have found higher rates of anxiety disorders and psychosis in individuals with autism. However, these studies rely on registers of individuals who have received a diagnosis. The Adult Psychiatric Morbidity Survey (APMS) is a representative sample of the whole population and used the abbreviated Autism Quotient (AQ20), a structured questionnaire designed to capture signs of ASD in adult participants; and the Autism Diagnostic Observation Schedule (ADOS) scores, a standard measure of social and communication deficits associated with the spectrum of autism. The survey also included responses from those such as older adults, who may have not been given an autism diagnosis due to limitations on diagnostic facilities for adults, but who were able to be assessed for autistic traits. Psychiatric comorbidity in autism is associated with worse outcomes for individuals and a greater burden for their families and society. Understanding the psychiatric comorbidities which affect adults with autism is therefore essential to the planning of community services and optimising quality of life.

The data will be processed in line with EU GDPR Article 6 (1e) “for the performance of a task carried out in the public interest” and EU GDPR Article 9 (2j) “processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes in accordance with Article 89(1)”. Rates of autism have risen significantly over the last decade, and while this increase may have resulted from widening diagnostic criteria or increased awareness, a true increase in prevalence cannot be ruled out and a greater number of adults are now living with autism than ever before. People with autism have higher rates of premature mortality. Psychosocial adversities are known to be associated with mental illness and have been reported in Autism but have not been adequately investigated in population‐based studies. Understanding these will help to identify modifiable risk factors to prevent the development of mental illness in this population. Participants have freely participated in the Adult Psychiatric Morbidity Survey (APMS) and were aware that their data would be used for research purposes. At the time of recruitment, they consented to this. All APMS 2014 data is pseudonymised, protecting the identities of participants.

Using the APMS data, the University of Bristol will assess the relative risk of someone with either an autism diagnosis or autistic traits developing an anxiety disorder, depression, psychosis or experiencing self-harm or suicidality compared with the general population. the University of Bristol will also consider the risks in the presence or absence of learning disability. Autism diagnoses and autistic traits are measured in the survey using self-reported data and a semi-structured assessment carried out by a clinically trained research interviewer (AQ20 and ADOS scores). In a secondary analysis using the APMS survey data the University of Bristol will estimate the respective risk of having several adverse life events for people with autism and autistic traits compared with the general population. Anxiety disorders and psychosis have been found to be significantly raised in population-based studies of autism in Sweden in data published this year with particularly high rates in individuals without comorbid learning disabilities (8, 10), however this work has not been replicated using a large UK data-set and the 2014 APMS will allow the measures of psychosocial stressors to be examined and their association with psychiatric comorbidity to be assessed. If the numbers of individuals with Autism in the 2014 dataset are low, then the dataset will be combined with the 2007 dataset which this project group has access to.

This research will be undertaken as part of an Academic Clinical Fellowship studying the mental wellbeing of adults with autism and identifying the psychosocial factors associated with psychiatric comorbidity.

The data subjects for this study are UK residents aged over 16 years living in private households who have completed the APMS survey. There is no control group. The level of data required is pseudonymised and there will be no further data linkage and no attempt to identify individuals. The full dataset is to allow for control of the confounding factors. There is no requirement for there to be geographical spread of the data. When the UK data service give the dataset, they provide the whole dataset as there is no facility to select individual variables. The UK data service holds the data on behalf of NHS digital and once access it granted by NHS digital, the data will be provided from the UK data service. The data will not be linked to any other dataset. No data will be shared with third parties. The data is requested for 12 months to allow time for submission to academic journals and revision of data at the request of peer reviewers.

The University of Bristol is the sole Data Controller who also process data.

NIHR School for Public Health Research are funding the Academic Clinical Fellowship for which this research project is being conducted. NIHR will only get notified of an publication output and do not request or require any data before that. NIHR does not control the scope or conduct of the research work. The university of Bristol will also be hosting the data on their safe haven file storage. For all of these reasons the university of Bristol will be the only data controller on this agreement.

The research will provide outputs to support secondary services and to autism awareness, screening and guidance for working with people with autism. Also, the outputs will provide support for professionals working with people presenting with psychiatric illness, if it is found that higher rates of psychiatric illness is present in people with autism. Secondly, the outputs will provide evidence to support research into interventions to treat psychiatric illness for people with autism. Thirdly, the outputs will identify psychosocial associations which may enable preventative strategies for the development of psychiatric illness in people with autism.

The reports will only include figures based on aggregated data. Results will be submitted for presentation at the Royal College of Psychiatry Southwest division biannual conference in Spring 2022. The research paper will be submitted to an academic peer-reviewed journal specialising in psychiatry or neurodevelopmental disorders, such as the Journal of Autistic and Developmental disorders by October 2022. Results will also be broadcast through Twitter (https://twitter.com/NimmoDr). If outputs are of public health interest, information will also be made available for local community mental health teams to advise regarding the importance of screening for or recognising autism in individuals presenting with mental health problems. The results, if substantial, will allow the formation of protocols for future research into treating anxiety disorders in adults with autism.

Outputs to be included in the peer-review journal is expected to be submitted by October 2022. The expected date for presenting at a conference is October 2022. Any paper or poster submitted for publication or review will involve acknowledgement of and review by the original authors of APMS 2014. Where possible, research outputs will be published to open access journals. The University of Bristol has an open access team to allow open access for a publication, where possible, to increase dissemination of research outputs.

The data from NHS Digital will not be used for any other purpose other than that outlined in this Agreement.

The extension is being requested as additional analysis for the paper is being done to compare the results from our study with results from Mendelian randomization using genetic data (accessed elsewhere). This will complement and help further the understanding of the outputs we have had from the APMS study. The reason for requesting the data for longer is in-case reviewers ask us for additional analysis.

We have identified that, according to the data in the APMS 2014, people with higher numbers of autistic traits have higher odds of being diagnosed with: Depression, Panic disorder, OCD, Phobic anxiety disorder, generalised anxiety disorder, Mixed anxiety and depression, PTSD, Psychosis, Bipolar Disorder and suicidal thoughts and deliberate self-harm. We have discussed this with colleagues working in the Bristol Autistic Spectrum service and considered what is currently in place to offer further ongoing support for those people with a higher risk of psychiatric comorbidity. There is a trial ongoing to investigate the effectiveness of sertraline for the treatment of anxiety in people with autism, but this data from the APMS will help support applications for further study into, for example, non-pharmacological treatments for these disorders in people with autism.

The University of Bristol (UoB) requires the Adult Psychiatric Morbidity Survey (APMS) data to investigate the level of Psychiatric comorbidity for people with Autism living in the UK.

Autism spectrum disorders are characterised by early-onset difficulties in social interaction, communication and restricted, repetitive patterns of interests and behaviour. Autism is now thought to affect at least 1% of the population although estimates of prevalence have increased over the last two decades. Yet there is still limited understanding of the adult outcomes of these conditions. The largest currently available population-based studies have found higher rates of anxiety disorders and psychosis in individuals with autism. However, these studies rely on registers of individuals who have received a diagnosis. The Adult Psychiatric Morbidity Survey (APMS) is a representative sample of the whole population and used the abbreviated Autism Quotient (AQ20), a structured questionnaire designed to capture signs of ASD in adult participants; and the Autism Diagnostic Observation Schedule (ADOS) scores, a standard measure of social and communication deficits associated with the spectrum of autism. The survey also included responses from those such as older adults, who may have not been given an autism diagnosis due to limitations on diagnostic facilities for adults, but who were able to be assessed for autistic traits. Psychiatric comorbidity in autism is associated with worse outcomes for individuals and a greater burden for their families and society. Understanding the psychiatric comorbidities which affect adults with autism is therefore essential to the planning of community services and optimising quality of life.

The data will be processed in line with EU GDPR Article 6 (1e) “for the performance of a task carried out in the public interest” and EU GDPR Article 9 (2j) “processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes in accordance with Article 89(1)”. Rates of autism have risen significantly over the last decade, and while this increase may have resulted from widening diagnostic criteria or increased awareness, a true increase in prevalence cannot be ruled out and a greater number of adults are now living with autism than ever before. People with autism have higher rates of premature mortality. Psychosocial adversities are known to be associated with mental illness and have been reported in Autism but have not been adequately investigated in population‐based studies. Understanding these will help to identify modifiable risk factors to prevent the development of mental illness in this population. Participants have freely participated in the Adult Psychiatric Morbidity Survey (APMS) and were aware that their data would be used for research purposes. At the time of recruitment, they consented to this. All APMS 2014 data is pseudonymised, protecting the identities of participants.

Using the APMS data, the University of Bristol will assess the relative risk of someone with either an autism diagnosis or autistic traits developing an anxiety disorder, depression, psychosis or experiencing self-harm or suicidality compared with the general population. the University of Bristol will also consider the risks in the presence or absence of learning disability. Autism diagnoses and autistic traits are measured in the survey using self-reported data and a semi-structured assessment carried out by a clinically trained research interviewer (AQ20 and ADOS scores). In a secondary analysis using the APMS survey data the University of Bristol will estimate the respective risk of having several adverse life events for people with autism and autistic traits compared with the general population. Anxiety disorders and psychosis have been found to be significantly raised in population-based studies of autism in Sweden in data published this year with particularly high rates in individuals without comorbid learning disabilities (8, 10), however this work has not been replicated using a large UK data-set and the 2014 APMS will allow the measures of psychosocial stressors to be examined and their association with psychiatric comorbidity to be assessed. If the numbers of individuals with Autism in the 2014 dataset are low, then the dataset will be combined with the 2007 dataset which this project group has access to.

This research will be undertaken as part of an Academic Clinical Fellowship studying the mental wellbeing of adults with autism and identifying the psychosocial factors associated with psychiatric comorbidity.

The data subjects for this study are UK residents aged over 16 years living in private households who have completed the APMS survey. There is no control group. The level of data required is pseudonymised and there will be no further data linkage and no attempt to identify individuals. The full dataset is to allow for control of the confounding factors. There is no requirement for there to be geographical spread of the data. When the UK data service give the dataset, they provide the whole dataset as there is no facility to select individual variables. The UK data service holds the data on behalf of NHS digital and once access it granted by NHS digital, the data will be provided from the UK data service. The data will not be linked to any other dataset. No data will be shared with third parties. The data is requested for 12 months to allow time for submission to academic journals and revision of data at the request of peer reviewers.

The University of Bristol is the sole Data Controller who also process data.

NIHR School for Public Health Research are funding the Academic Clinical Fellowship for which this research project is being conducted. NIHR will only get notified of an publication output and do not request or require any data before that. NIHR does not control the scope or conduct of the research work. The university of Bristol will also be hosting the data on their safe haven file storage. For all of these reasons the university of Bristol will be the only data controller on this agreement.

The research will provide outputs to support secondary services and to autism awareness, screening and guidance for working with people with autism. Also, the outputs will provide support for professionals working with people presenting with psychiatric illness, if it is found that higher rates of psychiatric illness is present in people with autism. Secondly, the outputs will provide evidence to support research into interventions to treat psychiatric illness for people with autism. Thirdly, the outputs will identify psychosocial associations which may enable preventative strategies for the development of psychiatric illness in people with autism.

The reports will only include figures based on aggregated data. Results will be submitted for presentation at the Royal College of Psychiatry Southwest division biannual conference in Spring 2021. The research paper will be submitted to an academic peer-reviewed journal specialising in psychiatry or neurodevelopmental disorders, such as the Journal of Autistic and Developmental disorders in August 2021. Results will also be broadcast through Twitter (https://twitter.com/NimmoDr). If outputs are of public health interest, information will also be made available for local community mental health teams to advise regarding the importance of screening for or recognising autism in individuals presenting with mental health problems. The results, if substantial, will allow the formation of protocols for future research into treating anxiety disorders in adults with autism.

Outputs to be included in the peer-review journal is expected to be submitted by August 2021. The expected date for presenting at a conference is May 2021. Any paper or poster submitted for publication or review will involve acknowledgement of and review by the original authors of APMS 2014. Where possible, research outputs will be published to open access journals. The University of Bristol has an open access team to allow open access for a publication, where possible, to increase dissemination of research outputs.

The data from NHS Digital will not be used for any other purpose other than that outlined in this Agreement.

Yielded Benefits is not a requirement for new applications.