autism phd funding uk

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PhD opportunities

We have internationally recognised research expertise in participatory and creative methods and approaches. Our vibrant ACoRNS research culture is supported by term-time, weekly online meetings for our students, staff, Visiting Fellows, and volunteers. You’ll be part of an inclusive, inspiring and collaborative research environment that includes opportunities for:

Presenting research ideas, progress and findings
Hearing from invited internal and external speakers
Taking part in ‘journal club’ discussions around a published paper or related news story
Developing research and leadership skills including writing for publication, managing ethical dilemmas, and chairing meetings
Sharing triumphs as well as challenges in a supportive and collegial environment
Contributing to taught programmes to improve your academic skills and career development

If you'd like to discuss our PhD opportunities informally, please email Sarah Parsons or Hanna Kovshoff:

Professor Sarah Parsons [email protected]

Dr Hanna Kovshoff [email protected]

Course modules
Acoustical engineering
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Every day I’m completely immersed in an environment that’s creative in all aspects
Everything I learn feels so relevant, even If it’s a subject rooted in the past
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Antibiotic resistance genes in chalk streams
Being autistic in care: Understanding differences in care experiences including breakdowns in placements for autistic and non-autistic children
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British Black Lives Matter: The emergence of a modern civil rights movement
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Study Postgraduate

Phd/mphil in intellectual and developmental disabilities (2024 entry).

Students walking outside the Social Sciences building at the University of Warwick.

Course code

30 September 2024

3-4 years full-time; up to 7 years part-time

Qualification

CIDD Link opens in a new window

University of Warwick

Find out more about our PhD/MPhil in Intellectual and Developmental Disabilities.

Explore intellectual disabilities and autism in depth on Warwick's MPhil/PhD in Intellectual and Developmental Disabilities. The Centre for Research in Intellectual and Developmental Disabilities (CIDD) is an internationally recognised research centre specialising in intellectual and developmental disabilities and autism across the lifespan.

Course overview

Students carry out a PhD by research only. There are no taught course components.

Teaching and learning

The department has several small PhD work spaces that students can access.

General entry requirements

Minimum requirements.

2.1 Upper Second Class honours undergraduate degree (or equivalent) in a related subject.

English language requirements

You can find out more about our English language requirements Link opens in a new window . This course requires the following:

IELTS overall score of 7.0, minimum component scores of two at 6.0/6.5 and the rest at 7.0 or above.

International qualifications

We welcome applications from students with other internationally recognised qualifications.

For more information, please visit the international entry requirements page Link opens in a new window .

Additional requirements

There are no additional entry requirements for this course.

Our research

We are interested in hearing from people who are thinking of pursuing a PhD in areas of CIDD’s expertise:

Intellectual and developmental disabilities (including autism) across the lifespan
Assessment and diagnosis in intellectual and developmental disabilities
Families, family adjustment, siblings of children with intellectual and developmental disabilities and sibling relationships
Mental health in children and adults with intellectual and developmental disabilities (including autism)
Forensic mental health in adults with intellectual disabilities and/or autism
Developmental psychology with children and adults with intellectual disabilities and/or autism
School attendance in children and young people with intellectual and developmental disabilities
Early intervention in intellectual and developmental disabilities
Early development of children with intellectual and developmental disabilities (including autism)
Transition to adulthood for individuals with intellectual and developmental disabilities
Parenting skills and interventions in families of children and adolescents with intellectual and developmental disabilities
Psychological and educational therapies and interventions for children, adolescents, adults and families of individuals with intellectual and developmental disabilities (including autism)
Training of education, health and social care staff who work with individuals with intellectual and developmental disabilities

If you are interested in doing a PhD with us, you can look for and contact potential supervisors using our CIDD Staff Directory .

Students are encouraged to contact K dot Gray dot 1 at warwick dot ac dot uk to discuss their interest in applying to study at CIDD prior to submitting an application.

You can also see our general University guidance about finding a supervisor .

Find a supervisor

We are interested in hearing from people who are thinking of pursuing a PhD in areas of CIDD’s expertise in intellectual disability / autism:

Students are encouraged to contact K dot Gray dot 1 at warwick dot ac dot uk to discuss their interest in applying to study at CIDD prior to submitting an application.

You can also see our general University guidance about finding a supervisor. Link opens in a new window

Tuition fees

Tuition fees are payable for each year of your course at the start of the academic year, or at the start of your course, if later. Academic fees cover the cost of tuition, examinations and registration and some student amenities.

Find your research course fees

Fee Status Guidance

The University carries out an initial fee status assessment based on information provided in the application and according to the guidance published by UKCISA. Students are classified as either Home or Overseas Fee status and this can determine the tuition fee and eligibility of certain scholarships and financial support.

If you receive an offer, your fee status will be stated with the tuition fee information. If you believe your fee status has been incorrectly classified you can complete a fee status assessment questionnaire (follow the instructions in your offer) and provide the required documentation for this to be reassessed.

The UK Council for International Student Affairs (UKCISA) provides guidance to UK universities on fees status criteria, you can find the latest guidance on the impact of Brexit on fees and student support on the UKCISA website .

Additional course costs

Please contact your academic department for information about department specific costs, which should be considered in conjunction with the more general costs below, such as:

Core text books
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Scholarships and bursaries

Scholarships and financial support

Find out about the different funding routes available, including; postgraduate loans, scholarships, fee awards and academic department bursaries.

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Find out more about the cost of living as a postgraduate student at the University of Warwick.

Centre for Research in Intellectual and Developmental Disabilities (CIDD)

CIDD is an internationally recognised research centre with an applied research focus on intellectual and developmental disabilities, including autism.

We emphasise combined methods research undertaken in multi-disciplinary teams, secondary analysis approaches, and intervention evaluation designs including randomised controlled trials.

Find out more by visiting our website. Link opens in a new window

How to apply

The application process for courses that start in September and October 2024 will open on 2 October 2023.

For research courses that start in September and October 2024 the application deadline for students who require a visa to study in the UK is 2 August 2024. This should allow sufficient time to complete the admissions process and to obtain a visa to study in the UK.

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We may have revised the information on this page since publication. See the edits we have made and content history .

Why Warwick

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9th in the UK (The Guardian University Guide 2024) Link opens in a new window

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(The Graduate Market in 2024, High Fliers Research Ltd. Link opens in a new window )

About the information on this page

This information is applicable for 2024 entry. Given the interval between the publication of courses and enrolment, some of the information may change. It is important to check our website before you apply. Please read our terms and conditions to find out more.

Laboratory for Innovation in Autism PhD Studentships

At the multidisciplinary Laboratory for Innovation in Autism we seek to understand the subtle, but significant motor disruption in autism spectrum disorder, its neurodevelopmental origins and contribution to psychological development across early childhood. We are an engaged, award-winning team working to advance knowledge of child development with technological innovation in smart technology and serious games made fun for young children. We work across psychology, neuropsychiatry, education, and engineering with key international collaborators at Edinburgh, Gothenburg, Pisa, and Melbourne.

Child Development
Machine Learning

Supervision is available from Prof. Jonathan Delafield-Butt (Autism and Child Development), Prof. Phil Rowe (Motor Control and Biomedical Engineering), and Dr Christos Tachtatzis and Prof Ivan Andonovic (Machine Learning and Electronic Engineering). Studentships are available from the following:

Carnegie/Caledonia PhD Scholarships – 3 Year PhD. Closing Date: 28 February 2020
Economic & Social Research Council – 3 Year PhD or 3 + 1. Closing Date: 10 January 2020
Arts and Humanities Research Council – 3.5 Year PhD. Closing Date: 6 January 2020
Student Excellence Awards – 3 Year PhD. Closing Date: 6 March 2020
Dean’s Global Research Scholarship (HaSS) – Up to 3 Years. Closing Date: 30 March 2020

Please contact us at [email protected] or [email protected] well in advance of the deadlines to discuss your application, and if selected for support, to prepare your submission. Studentships offer a stipend at UKRI rates and cover UK fees. Additional funding is available for outstanding international candidates through the Dean’s Global Research Scholarship.

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UCL Great Ormond Street Institute of Child Health

Great Ormond Street Institute of Child Health

Postgraduate research programmes
How do I make a GOS ICH PhD application?
MRes Child Health
PhD Studentships
Supervision & progress

The health of children with learning disability or autism and their families

Supervisors: Dr Pia Hardelid, Dr Ania Zylbersztejn

The health of children with learning disability or autism and their families: evidence from electronic health records

Background: Up to one in three children in England have a long-term condition or disability. Children with long-term conditions, particularly neurodevelopmental conditions such as autism or learning disabilities, are more likely to require specialised medical services and frequent contact with healthcare. Most of the care for a child with long-term conditions will be provided by the child’s family, who will also negotiate access to different NHS services, support from schools and social care. Caring for a child with long-term conditions and co-ordinating their care across multiple services can therefore be a major source of stress leading to both mental and physical health problems for parents. We know very little about the impact on siblings. Routinely collected health data provides a unique opportunity to study family health.

Aims/objectives: This project will use real-world NHS data to examine variation in the health and wellbeing of children with learning disabilities or autism and their families. The specific objectives are to: 1. Create nationally representative cohorts of mothers, fathers and siblings using electronic primary care records. 2. Assess inequalities (by deprivation, region, ethnic group) in mental and physical health outcomes of children with learning disabilities or autism, their parents and siblings compared to the general population and families of children with another chronic condition - asthma. 3. Examine how health outcomes of families vary according to the characteristics of the child (such as age, complexity of health needs) to indicate groups that would benefit most from targeted interventions.

The findings from this project will inform policies relating to health and other services that are likely to improve the health of children affected by learning disability or autism and their families.

Methods: The student will analyse data from a primary care database (Clinical Practice Research Datalink, CPRD, currently capturing 16 million active patients), 1 linked to hospital admission records (Hospital Episode Statistics, HES). 2 As GPs provide primary care (vaccinations, common medications, health check-ups) and are gatekeepers for secondary care (e.g. coordinating referrals), CPRD provides a unique opportunity to study population health. The student will work with longitudinal CPRD data on over a million young people born between 1987-2021 and evaluate information available on their families. The methods used to indicate and validate family cohorts in administrative health records will be relevant to future family health research.

This is an excellent opportunity for a student with strong quantitative skills (such as an MSc in statistics, epidemiology, demography or similar) and experience of statistical programming to build their skills and experience using real-world NHS data to inform care delivery and support for a highly vulnerable group of children and their families. This studentship will provide opportunities to gain expertise in statistical methods for longitudinal data analysis and working with big administrative health records. The student will be based within the Child Health Informatics Group , a large, diverse and friendly group of data scientists with expertise in policy-relevant research using routinely collected NHS and government data. The Group has excellent track record of policy engagement (for example via NIHR Children and Families Policy Research Unit ) and international comparisons, with an established network of collaborators from Sweden, Finland, Canada and Australia, that the student will benefit from.

References: 1. Herrett E, Gallagher AM, Bhaskaran K, et al. Data Resource Profile: Clinical Practice Research Datalink (CPRD). Int J Epidemiol 2015; 44: 827–36. 2. Herbert A, Wijlaars L, Zylbersztejn A, Cromwell D, Hardelid P. Data Resource Profile: Hospital Episode Statistics Admitted Patient Care (HES APC). Int J Epidemiol 2017; 46: 1093–1093i.

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Student profiles

Autism Studies

The Autism Studies MA provides the academic background necessary for good practice both with autistic individuals and organisations that provide or arrange support.

Key information

Duration 1 year full-time
Start date September
Location Canterbury

Our programme is designed for graduates and practitioners, giving you the confidence to apply an advanced level of knowledge to many real-life situations. Gain a specialist, vocational qualification that will develop your career in the field of intellectual disabilities and autism.

The deadline for applications in consideration for entry in September is the 18 JULY , and we advise applicants who wish to be considered for entry in September to apply and provide all supporting documents by this date. Applications will remain open after the deadline, and we may be able to continue to consider applications received after this date for entry in September. However, there may be insufficient time to do so, in which case consideration would be for entry the following academic year.

Reasons to study Autism Studies at Kent

Study alongside some of the UK’s leading academics working in autism, learning disability and community care.
We offer a range of funding opportunities to fund your studies.
As a student or graduate, you can join the Tizard Practitioners’ Network of experts in the field.
Receive academic and professional support from leading clinicians and researchers in the field of intellectual disabilities and autism.
Benefit from our excellent links with health and social care organisations, and other relevant establishments.

What you'll learn

You study a combination of academic modules and (if doing the MA/PDip) carry out a case study and/or dissertation which may be empirical or library-based. PDip students do the case study, while MA students do the case study and the research project.

Everything you need to know about our Autism Studies course

Entry requirements, course structure, how you'll study.

A good honours degree, typically in psychology or other relevant social sciences, or comparable professional qualifications and experience.

All applicants are considered on an individual basis and additional qualifications, professional qualifications and relevant experience may also be taken into account when considering applications.

Please see our International Student website for entry requirements by country and other relevant information. Due to visa restrictions, students who require a student visa to study cannot study part-time unless undertaking a distance or blended-learning programme with no on-campus provision.

English language entry requirements

This course requires a Very Good level of English language, equivalent to a high B2 on CEFR.

Details on how to meet this requirement can be found on our English Language requirements webpage .

Examples:

IELTS 6.5 with a minimum of 5.5 in each component

PTE Academic 67 with a minimum of 59 in each sub-test

A degree from the UK

A degree from a Majority English Speaking Country

Please note that if you are required to meet an English language condition, we offer a number of pre-sessional courses in English for Academic Purposes through Kent International Pathways .

The following modules are indicative of those offered on this programme. This list is based on the current curriculum and may change year to year in response to new curriculum developments and innovation. Most programmes will require you to study a combination of compulsory and optional modules. You may also have the option to take modules from other programmes so that you may customise your programme and explore other subject areas that interest you.

Further details

Research Methods

The aim of this module is to teach students about research methodology and the knowledge needed to access and interpret the research literature. For those who take the statistical analysis element, the aim is also to teach appropriate statistical techniques for the analysis of quantitative data. The emphasis will be on methods of data collection and analysis which will be useful in practice settings, so that advanced multivariate techniques will not be taught.

Find out more

Behaviour Analysis and Intervention

Students will receive training on behaviour analysis and broader systems of support that have emerged from the field of behavioural science to support individuals diagnosed with intellectual and/or developmental disabilities. The module will critically evaluate the historical application of behavioural approaches, focusing on ethical and empowering support frameworks that can improve people's quality of life. Training will cover basic behavioural principles that link to how we learn, assessment strategies to better understand behaviour within its context, strategies to support individuals that might be exhibiting behaviours described as challenging, and ways to promote communication and the development of skills.

Service Issues in Intellectual and Developmental Disabilities by Distance Learning

The aim of this module is to give students an understanding of organisational issues involved in learning disability services, including institutionalisation and deinstitutionalisation, theories of normalisation and criticisms of these theories, methods of analysing quality of life and care and ways of producing change in services. This module is taught as a web-based guided study module with seminars at several points in the first term. For AIIDD students, this module is closely linked to the service placement and discussion and application of web-based units will occur during placement supervision.

Extended Essay

All students will write one essay on a topic which requires them to draw on material from the service issues, social psychology and behavioural analysis and intervention modules. This will be done over the course of the year for full time students and in the second year for part time students and will be submitted during the third term of the final year.

Social Psychology of Autism

The aim of this module is to teach the basic facts about the nature and origins of autism, including definitions, epidemiology, biological, social and environmental causes. In addition, characteristics and needs of people with autism will be considered (including cognitive and social characteristics). All of this information will be set within the wider context of intellectual and developmental disabilities and students, although focusing primarily on autism, will be required to learn and know about these issues more widely. Over 50% of people with autism have a co-morbid condition and therefore this is an essential approach.

Social Psychology of Autism: Advanced

The aim of this module is to teach advanced facts about the nature and origins of autism, including definitions, epidemiology, biological, social and environmental causes and autism specific interventions. This module will build on the knowledge of characteristics and needs of people with autism (including co-morbidities), set within the wider context of intellectual and developmental disabilities. Whist TZRD8660 (Social Psychology of Autism by Distance Learning) introduced students to intervention and approaches to supporting people with autism, this module will expand this knowledge to include the critical understanding of the research evidence around intervention in autism. Theories used to explain autism will be discussed in depth, with students supported to critically interrogate the evidence base. The knowledge and understanding developed will be used to compare and contrast approaches to intervention and draw intelligent conclusions about policy and practice. Issues from across the lifespan will be addressed, including early intervention.

Case Study Assessment and Intervention 1

This module is intended for health or social care professionals who are working with people who are on the autism spectrum (either in a paid or voluntary basis), or those who are family carers. Students will be able to apply their theoretical learning from TZRD8660 (Social Psychology of Autism) and TZRD8730 (Social psychology of autism: Advanced) to case studies.

Students will work their way through the case study material provided. As they do so, they draw on the knowledge they have gained from the academic modules related to the characteristics and nature of autism, the causes and theories of autism, intervention and approaches to support, challenging behaviour and complex needs, and service design, service quality and organisation change. They will use this knowledge to analyse case study data, produce formulations, plan interventions, interpret outcome data and describe methods of implementation, monitoring and evaluation.

Case Study Assessment and Intervention 2

This module is intended for health or social care professionals who are working with people with autism (either in a paid or voluntary basis), or those who are family carers. Students will be able to apply their theoretical learning from TZRD8660 (Social Psychology of Autism) and TZRD8730 (Social psychology of autism: Advanced) to case studies.

Research Project in Intellectual and Developmental Disabilities

During the first term of the course students will develop ideas for their research project and will be given the opportunity to choose a research project proposed and supervised by members of the course team or other Tizard staff ( course handbook for the list of topics for the current year). Students who choose to design their own project will be allocated a project supervisor. Students following the MSc in Analysis and Intervention in Intellectual and Developmental Disability are required to do an empirical project. All other students can choose between either an empirical or a non-empirical (e.g. policy or research review) project.

Students develop a proposal (assessed) for their research project with advice from their supervisor and apply for ethical approval either to the Tizard Ethics Committee (Ethical Review Checklist available on web-based resources) or to another ethics committee such as those in the NHS.

Write,Right

Duration: One year full-time, two years part-time

Coursework is taught through a mixture of web-based resources, directed reading, videos, lectures, seminars and practical sessions, supported by a number of workshops, where you work with skilled professionals and have the opportunity to share ideas and experiences with fellow students.

Teaching and assessment

Each of the five taught modules is assessed by a computer-based exam and an extended essay. In addition, the Research Methods module involves short assignments and a worked problem.

Programme aims

This programme aims to:

provide you with a detailed knowledge of autism and other developmental disabilities
provide you with experience of conducting research or intervention in the field of autism (PDip/MA only).

Learning outcomes

Knowledge and understanding.

You will gain knowledge and understanding of:

the characteristics, diagnosis and epidemiology of autism
cognitive, communicative and social characteristics of people with intellectual disabilities
biological, social and environmental causes of autism
behaviour analysis
intervention and approaches to supporting people with autism
challenging behaviour and other associated complex needs
ideology, policy and service development
definition and measurement of service quality
the relationships between service organisation and quality research methodology.

Intellectual skills

You develop intellectual skills in:

appraising and interpreting evidence from the academic literature and personal/work experience
presenting critical, balanced arguments.

Subject-specific skills

You gain subject-specific skills in:

(applies to MA and PDip only) conducting research on a topic relevant to autism and / or conducting an intervention study and case study assignment relevant to autism.

Transferable skills

You will gain the following transferable skills:

communication: the ability to organise information clearly and respond to written sources
numeracy: if you are doing the statistical element of the research methods module, you will make sense of statistical materials and integrate quantitative and qualitative information. You will also become familiar with ways of summarising and presenting data
information technology: the ability to produce written documents, undertake online research
working with others: the ability to work co-operatively on group tasks both within the virtual learning environment and during the residential workshops
improve your own learning: the ability to explore your strengths and weaknesses, time management skills and review your working environment
problem-solving: the ability to identify and define complex problems, explore alternative solutions and discriminate between them.

Study support

All teaching takes place at the Tizard Centre. Postgraduate research students have a shared office space with a computer and telephone.

Acclaimed active department

The Tizard Centre runs an annual seminar series where staff or guest lecturers present the results of research or highlight recent developments in the field of social care. The Jim Mansell Memorial Lecture invites public figures or distinguished academics to discuss topics that could interest a wider audience. The Centre also publishes the Tizard Learning Disability Review (in conjunction with Emerald Publishing) to provide a source of up-to-date information for professionals and carers.

The Tizard Centre provides consultancy to organisations in the statutory and independent sectors, both nationally and internationally, in diversified areas such as service assessment, person-centred approaches, active support and adult protection. The Centre also teaches a range of short courses, often in conjunction with other organisations.

Dynamic publishing culture

Staff publish regularly and widely in journals, conference proceedings and books. Among others, they have recently contributed to: Journal of Mental Health ; Journal of Applied Research and Intellectual Disabilities ; American Journal of Intellectual and Developmental Disabilities ; and Journal of Intellectual Disability Research .

Global Skills Award

All students registered for a taught Master's programme are eligible to apply for a place on our Global Skills Award Programme . The programme is designed to broaden your understanding of global issues and current affairs as well as to develop personal skills which will enhance your employability.

Current research areas include: social inequalities and community care; intellectual and developmental disabilities.

Staff research interests

Full details of staff research interests can be found on the School's website .

Our postgraduate courses improve employability prospects for both those with established careers and new entrants to the field. Many of our students already work with people with intellectual and developmental disabilities in professional, management or supporting capacities.

Our programmes support their continuing professional development and enhance their opportunities for career advancement. Other students, who are at the beginning of their careers, move on to a range of professional roles in health and social care including working as psychologists in learning disability or behavioural specialists in community learning disability teams; service management of development roles; clinical psychology training or a PhD.

Career destinations include working as a clinical specialist, special needs advisor, autism teacher and ABA tutor for various health and special needs organisations such as the Step by Step School, Special Help 4 Special Needs and WA Health.

The 2024/25 annual tuition fees for this course are:

Autism Studies - PCert at Canterbury
Autism Studies - MA at Canterbury
Autism Studies - PDip at Canterbury

For details of when and how to pay fees and charges, please see our Student Finance Guide .

For students continuing on this programme fees will increase year on year by no more than RPI + 3% in each academic year of study except where regulated.* If you are uncertain about your fee status please contact [email protected] .

Your fee status

The University will assess your fee status as part of the application process. If you are uncertain about your fee status you may wish to seek advice from UKCISA before applying.

General information

For students continuing on this programme, fees will increase year on year by no more than RPI + 3% in each academic year of study except where regulated.*

Additional costs

General additional costs.

Find out more about general additional costs that you may pay when studying at Kent.

Search our scholarships finder for possible funding opportunities. You may find it helpful to look at both:

University and external funds
Scholarships specific to the academic school delivering this programme.

We have a range of subject-specific awards and scholarships for academic, sporting and musical achievement.

Ready to apply?

Learn more about the application process or begin your application by clicking on a link below.

You will be able to choose your preferred year of entry once you have started your application. You can also save and return to your application at any time.

Need help deciding?

Our friendly team is on hand to help you with any queries you have.

Download our prospectus and guides.

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Everything you need to know about applying to Kent from abroad.

Apply for entry to Autism Studies

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Part-time at Canterbury

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Supporting your success

We are here to support your postgraduate journey.

Kent ranked top 50 in The Complete University Guide 2024 .

Support for funding so you can focus on your studies.

Research excellence.

Kent has risen 11 places in THE’s REF 2021 ranking, confirming us as a leading research university.

It’s easy to study on or off campus at Kent – discover what is right for you.

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Research work

At the National Autistic Society, we want to support research which respectfully and ethically centres autistic people and their experiences, goals, and needs, in alignment with our Moonshot vision and strategy . We partner with researchers to:

Ensure their work addresses the priorities identified by autistic people;
Encourage meaningful co-production;
Provide guidance around supporting participants appropriately.

We can utilise our unique positioning and networks to help advertise for participants, with a reach of over 30,000 autistic people. We are also well-placed to support dissemination of findings, with long established relationships with local and national government, and other key decision-makers.

We work with autistic people, families, university academics and other autism charities and organisations to support and promote research that is good quality, and reflects people’s real experiences.

Who can we work with?

We want to support quality research which addresses issues that are important to autistic people and their families, and aims to make a positive impact to their lives.

We have limited capacity and therefore can’t support every enquiry we receive. If your research meets the following criteria we may be able to help:

Does the topic align with key priorities for autistic people set out in our Moonshot vision ?
Is your research PhD level or above?
Does your research involve meaningful autistic involvement?
Will autistic participants be compensated and supported appropriately?

Read on if your project ticks the above boxes. If your study doesn’t meet any of the above – watch this space as we add useful tools and resources to this webpage, for you to consider when shaping your research.

How can we help?

We support quality research in various ways, and to different levels. The two main paths are as follows:

Partnership

We can provide full partnership - working with you from bid development stage through to dissemination. Typically, our input focusses on Personal and Public Involvement (PPI) including:

Co-writing and proofing bid application
Recruiting and facilitating a steering group/advisory panel of autistic people to help guide the project throughout its duration
Assisting with recruitment of autistic people to research/evaluation roles within the project
Attending project group meetings
Consulting on / co-producing documentation/materials
Advertising for study participants through our online networks and branches
Disseminating and promoting the findings through our public platforms and highly specialist policy and media teams.

This is a bespoke service, and costings to be factored into your funding bid would depend on the enquiry.

If you would like to discuss partnership, please complete this form and email it to [email protected]

Advertising for participants

If your study is established and you are recruiting for participants, we may be able to advertise on your behalf through our online networks and branches. Please note we cannot accept all requests to advertise. Your study must meet the requirements outlined above, and you must have ethical approval for us to consider providing support.

If you would like to request help advertising for participants, please complete this form and email it to [email protected] along with proof of ethical approval and your poster.

Have a different enquiry?

If you have an enquiry that isn’t covered above, you can still get in touch. We also partner with other charities and non-research organisations. Please email [email protected] giving as much information as you can.

What happens next?

Once we receive your enquiry and completed form with supporting evidence, we will begin our internal review process. We will then contact you to discuss next steps.

Are you an autistic individual interested in becoming involved in research?

By contributing to quality research, you can help to shape the future for autistic people and their families.

We regularly recruit advisory panels/steering groups for research projects. These are usually autistic people with experience of the specific research topic (for example co-occurring mental health conditions, or sleep difficulties). These are paid opportunities and panellists are given guidance and support through the process. If you are interested in being considered for these opportunities please email [email protected] .

If you are interested in being a research participant (for example filling out an online survey or attending a face-to-face interview), keep an eye on our community forum where we occasionally post opportunities.

Who are we working with?

Audit 50

Led by University College London, this study focusses on the experiences of older autistic people, particularly around diagnosis. Findings suggest a substantial number of autistic adults in England are undiagnosed, compared to children. The research team are calling for better access to diagnostic services for adults, improved post-diagnosis support, and greater societal understanding and acceptance of autism.

BEAMS – ID

Led by Warwick University, this study examines the effectiveness of an intervention to reduce anxiety in autistic people with learning disabilities. The research group has adapted a talking therapy for use by autistic people with learning disabilities, and completed a feasibility study, comparing outcomes to treatment as usual (TAU).

Autism in affinity spaces: Interest-driven social media practices during the transition to adulthood

Led by Queen Mary University of London, this study explores autistic young people’s experiences of social media. It will focus on which social media resources are available to them, how these resources are used to interact with others, and to engage in interests.

Youth Justice

Led by University of Kent, this project focusses on the experiences of autistic people within the Youth Justice System. The project highlights a lack of understanding and support for autistic young people within the system.

BRIDGING (Breakthrough interview extended reality training towards reducing the autism employment gap)

Led by University of the West of England, this project aims to help autistic people in the UK to obtain and sustain a job. Virtual scenarios for Virtual Reality (VR) headsets will be created, to practise having job interviews and experience the first days at a new job. This will help autistic jobseekers to know what to expect and be less anxious, as part of a training package. It will also help employers to understand what adjustments they can make for autistic people.

IHOAP (Tailored Healthcare Adjustments for older autistic people: Development and initial evaluation of an intervention to improve healthcare)

Led by Northumberland Tyne and Wear NHS Trust, this study focusses on the experiences of older autistic people in relation to healthcare. It tests the feasibility of an intervention to help older autistic people get better access to healthcare, exploring tailored adjustments to improve the effectiveness of care.

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Studentships and doctoral training

Get a studentship to fund your doctorate.

UKRI studentships offer funding for doctoral research. They also offer you access to training, networking and development opportunities to help you build a research and innovation career.

Our expectations for research organisations, supervisors and students are set out in the statement of expectations for doctoral training .

You could get:

a minimum stipend of £19,237 per year for your living costs, which is paid to you in regular instalments
support for your tuition fees (minimum £4,786 per year)

The stipend is usually non-taxable and does not need to be paid back. Some research organisations may offer more if you study in London, or they or one of their collaborators might decide to top up the payment. This will be outlined in the studentship advert from the research organisation.

We normally pay the support for tuition fees directly to your research organisation.

The levels given here are for the academic year 2024 to 2025. UKRI’s approach to doctoral stipend and fee levels will be reviewed through the  new deal for postgraduate research .

Additional support for your doctoral studies

As a UKRI-funded doctoral student, you may be able to access additional funding to cover the cost of other related training and development opportunities.

This could include:

conference attendance
language training
overseas research visits
internships or placements with a non-academic partner

The availability of support will depend on the research organisation and the training grants they have on offer. You should contact the research organisation you are interested in applying to, to find out what you could get.

Extra support if you have a disability

If you have a disability, you may be entitled to a Disabled Students’ Allowance (DSA) on top of your studentship.

You should speak to your research organisation’s disability advisor to assess your needs. They can help put the right support in place, including a DSA application if necessary. You cannot claim DSA directly from UKRI.

DSA helps to cover the cost of any additional support that a person studying for a doctorate might need as a result of a disability, mental health problem or specific learning difficulty.

The allowance covers:

non-medical personal assistance
specialist equipment
extra travel costs
general expenses

Find out more about DSA in our framework .

If you are a research organisation you can download claim forms and guidance for DSA .

Who can apply

Any prospective doctoral student wishing to study at a UK research organisation, including prospective international students, can apply for a UKRI studentship.

All UKRI-funded doctoral students will be eligible for the full award, both the stipend to support living costs, and home-level fees at the UK research organisation rate.

How to find opportunities

Many UK research organisations offer some form of studentship funding from UKRI. These opportunities will depend on the subject you want to study and will normally be advertised by the research organisations.

Research organisations may have additional opportunities that do not involve UKRI. UKRI supports around 20% of all UK-based postgraduate researchers. You should speak to the research organisation you are interested in to find out what studentships are available.

You could also consider using a specialist website like   FindaPhD  to look for opportunities.

When to apply

Research organisations set their own deadlines for applications.

Many open for applications early in the academic year and close in January or February. This is not a hard and fast rule. It is important that you check the deadlines for the research organisation where you want to study.

How to apply

You cannot apply to UKRI for a studentship. You must contact the research organisation you are interested in studying with and use their application process.

For doctoral students who are already studying with a studentship, there are opportunities to get additional funding to support placements that are separate from your doctorate.  Find training and development opportunities .

Last updated: 14 February 2024

This is the website for UKRI: our seven research councils, Research England and Innovate UK. Let us know if you have feedback or would like to help improve our online products and services .

Our research

Social Care Grant Development Awards 2023

In April 2021, Autistica announced the launch of a three-year partnership with the National Institute of Health Research (NIHR) to fund research focused on autism and social care. Autistica will seed fund researchers to enable them to develop high-quality, community-informed research proposals for NIHR’s Research for Social Care call for projects focusing on autism.

Award summary

Autistica is inviting research proposals for their social care development awards 2023, which enable researchers to develop high-quality research proposals to submit to the NIHR’s Research for Social Care Call (RfSC). Projects will focus on important, under-researched areas of social care provision accessed by or impacting autistic adults. They will help researchers to refine and strengthen RfSC proposal ideas, plans and objectives.

Award funding

Up to two projects will be funded up to a total value of £20,000. This grant funding will cover direct costs associated with research expenses, materials and dissemination of outputs but will not cover indirect costs related to existing salaries or estates costs.

How to apply

We encourage researchers from a range of backgrounds, including early career researchers, with the support of an experienced, multidisciplinary team. Additionally, the lead investigator must:

Hold a PhD or similar qualification
Be based at an eligible UK institution
Hold continuous employment with the host organisation for the award duration.

Click here for full guidance.

All applications must be made through the Autistica Grant Platform by 11:59 pm, on Sunday 11 June 2023.

If you have any questions, contact Charlotte Featherstone, Research and Partnerships Manager at [email protected] .

Previously funded projects

Autism and addiction.

With Dr Sally Adams

A project that identified key issues when autistic people access drug and alcohol services.

Autism and social prescribing

With Dr Kerryn Husk and Charlotte Featherstone

A project that explored the potential for embedding social prescribing into social care pathways.

Autism and aging

With Dr Mary Stewart

A project that identified priority areas and issues relating to older autistic people and social care

Autism and homelessness

With Dr Georgia Lockwood-Estrin

A project that aimed to develop an Autism and Homelessness toolkit and training package through stakeholder workshops

NIHR's Research for Social Care

This annual call funds research which generates evidence to improve, expand and strengthen the way adult social care is delivered for users of care services, carers, and the public. Contracted institutions must be in England but can have partnerships with or sponsorship from institutions within the UK. Applications through Research for Social Care should demonstrate strong links to people with social care needs, to social care service users and carers, and to organisations which provide adult social care services. To find out more about NIHR eligibility criteria please visit the NIHR website and the Research for Social care call page. Our Grant Development Awards and NIHR Research for Social Care partnership is made possible by the generous support of CareTech Foundation .

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Autism & Learning, PgCert

University Home
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Autism & Learning

Introduction

This programme is designed for teachers and related professionals involved in supporting individuals on the autism spectrum.

Study Information

At a glance.

The Postgraduate Certificate in Autism and Learning aims to give practitioners an in-depth understanding of the condition and an insight into the workings of the autistic mind. It will equip participants with practical approaches and interventions that will enable children, young people and adults on the autism spectrum to access learning, participate in learning, experience success, gain independence, and fulfil their potential.

The aims of the programme are:

To develop knowledge and critical understanding of the concept of inclusion and associated principles of equality, social justice, participation and partnership.
To develop a deep understanding of the complex conceptual issues in Autism, and the key theories, principles and issues in the field.
To critically evaluate current research in the field.
To critically review strategies and approaches and their evidence base.
To develop collaborative partnerships with individuals on the spectrum, parents, colleagues and other agencies.
To use acquired knowledge and understanding of autism to reflect critically upon practice.
To apply acquired knowledge and understanding of autism to formulate effective support for learners on the spectrum.
To conduct professional enquiries and use research evidence to generate professional knowledge and enhance understanding and practice
To apply acquired knowledge and understanding of autism to contribute to staff development and school/workplace improvement.

What You'll Study

Compulsory courses.

30 Credit Points

This course covers a range of conceptual issues fundamental to an understanding of autism in inclusive contexts. Participants will therefore develop a critical knowledge and understanding of policy, literature and research relating to the diagnostic criteria for autism, the key theories of autism, the main strategies used to support learners and the key themes and issues in the field. This will be linked to a critical knowledge and understanding of policy, literature and research on inclusion and issues around its meaning and enactment. The role of interprofessional collaboration and learner participation in facilitating inclusion is emphasised across the course.

This course explores the links between the diagnostic criteria for autism (difficulties with social communication, social interaction, flexibility of thought & sensory integration) and behaviour. We critically explore positive, evidence-based approaches to identifying solutions. We also critically examine the links between the national strategy for autism, theory and practice and the meaning of the notion of the ‘autism friendly workplace’. Students are introduced to strategies for reflecting critically upon workplace provision via structured auditing and action planning for change.

We will endeavour to make all course options available; however, these may be subject to change. Further information about potential changes can be viewed here.

Fee Information

Additional fee information.

In exceptional circumstances there may be additional fees associated with specialist courses. Any additional fees for a course can be found in our Catalogue of Courses .
For more information about tuition fees for this programme, including our refund policy, please visit our InfoHub Tuition Fees page.

Scholarships

Self-funded international students enrolling on postgraduate taught (PGT) programmes will receive one of our Aberdeen Global Scholarships, ranging from £3,000 to £8,000, depending on your domicile country. Learn more about the Aberdeen Global Scholarships here .

To see our full range of scholarships, visit our Funding Database .

Related Programmes

You may also be interested in the following related postgraduate degree programmes.

Health and Wellbeing Education
Inclusive Practice
Leadership in Professional Contexts

How You'll Study

All participants will be expected to read a range of research papers, theoretical texts and readings from the literature, and deal with these in a reflective and critical manner. Participants will also be encouraged to reflect critically on their own meanings and understandings, their experience of autism, their professional practice and institutional contexts.

Opportunities for active learning, group work, individual and group presentations, peer feedback and discussions are embedded across all courses. Visiting speakers and video presentations will ensure variety and provide additional stimuli.

Learning Methods

Group Projects
Individual Projects
Peer Learning

Assessment Methods

Formative and summative assessment is a feature of all courses. All assessments are designed to arise naturally from course content and learning. All summative assessments focus directly on workplace applications.

Why Study Autism & Learning?

The PGCert in Autism & Learning is an interprofessional programme that offers tremendous opportunities for professional growth in the company of colleagues who share your interests but who may bring very different experiences and perspectives.
The programme attracts students from Education, Social Care, Health and the Voluntary sector, as well as individuals with autism and parents of children on the autism spectrum.
This diverse student body ensures rich and lively debate and creates a stimulating environment in which we can learn from each other and provide mutual support.

Interested in this programme?

Entry requirements.

All candidates must have a relevant degree, experience in supporting individuals with autism and access to a workplace context for the purpose of the assignments.

Qualifications

The information below is provided as a guide only and does not guarantee entry to the University of Aberdeen.

Applicants will be graduates or will be able to provide evidence that they can work at postgraduate level. They must have previous relevant experience and be able to undertake studies and related developments in their workplace setting or other appropriate agency.

Please enter your country to view country-specific entry requirements.

English Language Requirements

To study for a Postgraduate Taught degree at the University of Aberdeen it is essential that you can speak, understand, read, and write English fluently. The minimum requirements for this degree are as follows:

IELTS Academic:

OVERALL - 6.5 with: Listening - 5.5; Reading - 6.0; Speaking - 5.5; Writing - 6.0

OVERALL - 90 with: Listening - 17; Reading - 21; Speaking - 20; Writing - 21

PTE Academic:

OVERALL - 62 with: Listening - 59; Reading - 59; Speaking - 59; Writing - 59

Cambridge English B2 First, C1 Advanced or C2 Proficiency:

OVERALL - 176 with: Listening - 162; Reading - 169; Speaking - 162; Writing - 169

Read more about specific English Language requirements here .

Document Requirements

You will be required to supply the following documentation with your application as proof you meet the entry requirements of this degree programme. If you have not yet completed your current programme of study, then you can still apply and you can provide your Degree Certificate at a later date.

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The Knowledge of Autism Questionnaire-UK: Development and Initial Psychometric Evaluation

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Published: 02 May 2024

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Sophie Langhorne 1 ,
Nora Uglik-Marucha 2 ,
Charlotte Broadhurst 1 ,
Elena Lieven 3 ,
Amelia Pearson 4 ,
Silia Vitoratou 2 &
Kathy Leadbitter ORCID: orcid.org/0000-0002-0744-2800 1

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Tools to measure autism knowledge are needed to assess levels of understanding within particular groups of people and to evaluate whether awareness-raising campaigns or interventions lead to improvements in understanding. Several such measures are in circulation, but, to our knowledge, there are no psychometrically-validated questionnaires that assess contemporary autism knowledge suitable to the UK context. We aimed to produce a brief measure to assess between-respondent variability and within-respondent change over time. A pool of questionnaire items was developed and refined through a multi-stage iterative process involving autism experts and a lay sample. Attention was paid to face validity, clarity, consensus on correct responses, and appropriate difficulty levels. Initial validation data was obtained from a lay sample of 201 people. Difficulty and discrimination ability were assessed using item response theory and low-performing items were removed. Dimensionality was evaluated with exploratory factor analysis, which revealed a one-factor structure of the questionnaire. Further items were removed where they did not load strongly on their main factor. This process resulted in a final 14-item questionnaire called the Knowledge of Autism Questionnaire-UK. Internal consistency was satisfactory, and the final questionnaire was able to distinguish between parents of autistic people and those without an affiliation to autism. The KAQ-UK is a new, freely-available measure of autism knowledge that could be used to assess between-respondent variability and within-respondent change over time. Further evaluation and validation of its measurement properties are required.

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Autism is a common and heterogeneous neurodevelopmental condition, affecting around 1.7% of the UK population (Roman-Urrestarazu et al., 2021 ). Public awareness of autism has somewhat improved over recent decades, with UK polls suggesting that 99.5% of people have heard of autism (NAS, 2015 ). However, research suggests that only 16% of autistic people in the UK feel understood by the public, resulting in social isolation (APPGA, 2019 ). Many misconceptions and myths about autism persist, including that autism is a childhood condition, that autism is caused by vaccines, and that autistic people do not enjoy social contact (Autistica, 2019 ). Accordingly, autistic people are often met with stereotypes and misconceptions (Draaisma, 2009 ) which may lead to prejudice and stigma. These misunderstandings can also lead to disparities in access to diagnostic and care services (Malik-Soni et al., 2022 ). In addition to its public health importance, knowledge of autism is needed by autistic people themselves, to aid their self-understanding and self-advocacy. It is also beneficial to the people around the autistic individual, to ensure the individual is understood and well supported.

Several measures of autism knowledge have previously been developed and are in circulation. Previous questionnaires have targeted knowledge in particular groups such as parents and caregivers (e.g., Kuhn & Carter, 2006 ; Vijayarani, 2013 ; Wang et al., 2012 ) or medical professionals (e.g.,Igwe et al., 2010 ; Shah, 2001 ), with only a handful of assessments assessing the knowledge of the general adult population (e.g., Gillespie-Lynch et al., 2015 ; Holt & Christensen, 2013 ; Mitchell & Locke, 2015 ). A systematic review by Harrison et al., ( 2017a , 2017b ) found that 57% of assessments of autism knowledge had weak or no psychometric support, with only 7% showing high levels of psychometric support. In addition to a lack of reliability and validity testing, Harrison et al., ( 2017a , 2017b ) reported that measures of autism knowledge were commonly subject to ceiling effects that render questionnaires insensitive to change over time (for instance, the Maternal Autism Knowledge Questionnaire; Kuhn & Carter, 2006 ).

Following the review by Harrison et al., ( 2017a , 2017b ), research has attempted to address the identified gaps through the development of new measures. More recent measures do not show ceiling effects (e.g., McClain et al., 2019 ) and have shown sensitivity to change over time (Gillespie-Lynch et al., 2022 ; Harrison et al., 2019 ). Extensive psychometric validation has also shown that one measure, The Autism Stigma and Knowledge Questionnaire (ASK-Q; Harrison et al., 2017a , 2017b ), has sound psychometric properties, with items holding good discriminatory and difficulty values (see Harrison et al., 2017a , 2017b , for more detail). In addition, a number of measures have good internal consistency in US populations (Benallie et al., 2020 ; Gillespie-Lynch et al., 2022 ; Kitchin & Karlin, 2022 ; McMahon et al., 2020). However, little research has assessed whether internal consistency of these measures withstands in other cultures. Of the research that has taken place, autism knowledge measures developed within the US have been shown to have borderline acceptable internal consistency in other countries (Cage et al., 2019; Kim et al., 2021 ). It is important to note the ASK-Q (Harrison et al., 2017a , 2017b ) has recently been found to hold good internal consistency in Eastern cultures (Harrison et al., 2019 ; Lu et al., 2020 ; Su et al., 2023 ). However further research is needed to further establish the cross-cultural validity of the measure (e.g., Saade et al., 2021 ).

In addition to limitations around cross-cultural validation, an additional challenge concerns the content of existing autism knowledge questionnaires. Some tap into constructs outside of ‘pure’ autism knowledge by including items that assess awareness of stigmatising beliefs (e.g., ASK-Q; Harrison et al., 2017a , 2017b ) or focus specifically on autism symptomatology (e.g., the Revised Autism Symptomatology Knowledge Assessment; McMahon et al., 2020) and therefore may not be appropriate for measuring knowledge more generally. Furthermore, some measures of autism knowledge also include ambiguous items, which are not readily true or false when the diversity of autism presentations and experiences are considered (e.g., “The biggest problem with diagnosing autism is that symptoms do not appear until age 5 or older”; Motta et al., 2018 ) thus complicating the validity of scoring such questionnaires. Moreover, many questionnaires that have been developed in the US contain country-specific items (e.g., “Less than 2% of people in the US have autism spectrum disorder”, McClain et al., 2019 ), or include items regarding US practice, such as “Autism can be diagnosed as early as 18 months of age” (Gillespie-Lynch et al., 2022 ), and “Behaviour therapy is an intervention most likely to be effective for children with autism” (Harrison et al., 2017a , 2017b ). Although such items may hold true within US conceptualisation and practice, they may not translate to those of other countries. For instance, autism is very rarely diagnosed as young as 18 months in the UK (Male et al., 2023 ) and the UK does not readily offer behavioural therapies such as ABA to families (Keenan et al., 2015 ). As a result, these assessments do not necessarily reflect contextual autism knowledge in countries outside of the US.

A further limitation within current measures of autism knowledge concerns their length. Many research studies use a large battery of assessments when assessing the effectiveness of an intervention or awareness-raising programme and lengthy autism knowledge questionnaires (e.g., ASK-Q, Harrison et al., 2017a , 2017b ) can prove be burdensome to administer. Although briefer assessments have been developed, such as the Participatory Autism Knowledge Measure (Gillespie-Lynch et al., 2022 ) and the 10-item version of the ASK-Q (Love et al., 2020 ), further psychometric analyses (such as Item Response Theory analysis) are needed to further assess the psychometrics of these measures.

Taken together, the above literature suggests that currently there is no brief, psychometrically validated questionnaire that measures contemporary autism knowledge suitable to the current UK context. A measure of the level of autism knowledge within the UK could help inform policy and practice, as well as allowing researchers to measure whether awareness-raising campaigns or interventions are successful in improving autism knowledge within specific targeted groups or the general public. We therefore set out to produce a valid brief measure of autism knowledge to assess between-respondent variability and within-respondent change over time.

Aims of the Current Study

The aims of the study are divided into two parts:

Part 1: Development of Questionnaire Items

To develop a pool of questionnaire items to measure autism knowledge with high face validity (reflecting contemporary UK autism knowledge) by:

selecting appropriate items from previous relevant questionnaires;

working with autism experts to generate additional items, assess the appropriateness and clarity of items, and achieve initial consensus on “correct” item responses;

piloting the item pool with the general public to assess the appropriateness of the difficulty of the questions for intended participants.

Part 2: Psychometric Analysis

To evaluate the psychometric properties of the measurement tool and its items using contemporary psychometric methods, such as item response theory (IRT) and factor analysis. We aimed:

To use IRT to select the best performing items, that is, the items that measure the level of autism knowledge evenly and reliably across the continuum of knowledge.

To identify the number and the nature of the dimensions that represent the construct of autism knowledge, and to retain items that are meaningful indicators of the construct.

To evaluate the final questionnaire with respect to internal consistency and ability to distinguish between groups based on their affiliation to autism (discriminative validity).

Ethical approval for this study was granted by the University of Manchester Research Ethics Committee (Refs: 2019-6116-10034 and 2020-6116-10034). The methods are structured in two parts consistent with the aims above.

The development of questionnaire items was addressed through a multi-stage process. Figure 1 provides an overview of the stages of this process, with detail provided in the sections below. Figure 2 provides details of item development (addition and removal of potential questionnaire items at each stage).

Overview of the process of questionnaire development

Flowchart of item development (in parentheses, numbers of items in the pool at each stage)

Screening and Selection of Items from Previous Questionnaires

A literature review identified five pre-existing questionnaires that met the following criteria: (1) UK questionnaires published in a peer-reviewed journal from anytime up until October 2018 (the date on which the screening stage took place) or (2) international questionnaires published between 2015 and October 2018, and the questionnaire was available within the paper or upon request (Gillespie-Lynch et al., 2015 ; Harrison et al., 2017a , 2017b ; Helps et al.,1999; Johnson & van Hecke, 2015; Shah, 2001 ). Items ( n = 95) were extracted from these five questionnaires and subjected to an initial screening process by two co-authors. Items were removed if they met one or more of the following criteria:

(a) duplicating other items either within or between questionnaires, either verbatim repetition or repetition of content ( n = 28); for instance, the item ‘Autism is more frequently diagnosed in males than females’ was found in both Gillespie-Lynch et al. ( 2015 ) and Harrison et al., ( 2017a , 2017b ).

(b) assessing something other than knowledge ( n = 6); for example, ‘I feel comfortable diagnosing or identifying a child as having autism’ (Helps et al., 1999).

(c) not applicable to current UK conceptualisation ( n = 5); for instance, ‘What is Asperger syndrome?’ (Shah, 2001 ; Asperger syndrome is no longer a diagnostic label used within current diagnostic manuals).

(d) overly technical or not assessing lay knowledge ( n = 2); for example, ‘On the basis of scientific research, which of the following biochemical, neurological or metabolic mechanisms are more likely to be associated with autism?’ (Shah, 2001 ).

(e) generalised or ambiguous claims that would be difficult to evidence as true for most or all cases ( n = 13), for instance, ‘Children with autism need extra help to learn’ (Harrison et al., 2017a , 2017b ) or ‘Children with autism can grow up to go to college and marry’ (Gillespie-Lynch et al., 2015 ).

(f) religious in nature ( n = 2), for example, ‘Autism is caused by God or a supreme being’ (Harrison et al., 2017a , 2017b ).

Item-level disagreements were discussed with a third co-author until consensus was reached. 56 items were removed, leaving a pool of items ( n = 39). Language was rephrased within some items to render it up-to-date and/or less stigmatising, for example, avoiding the term ‘disorder’ and instead using ‘condition’ or just ‘autism’ and using identity-first (‘autistic people’) rather than person-first language (‘people with autism’) in accordance with community preferences (Bottema-Beutel et al., 2021 ; Kenny et al., 2015 ).

Expert Focus Group to Assess and Generate Items

Five autism experts (bringing a range of lived and professional expertise, including two who were diagnosed as autistic themselves; see Table 1 for details) were recruited to participate in a focus group to further assess the appropriateness of the pool of questionnaire items ( n = 39). Participants received out-of-pocket expenses and refreshments. Additionally, experts who contributed outside of a paid role were compensated with vouchers (£50). Experts were asked to generate additional items and discuss ‘correct’ item responses. Decision-making on items to include and ‘correct’ answers was arrived at by consensus. Where consensus could not be established, the item was not included.. This resulted in the removal of seven items and addition of two items (see Fig. 2 ).

Expert Consensus on Clarity and Correct Responses

To further check the clarity of items and establish consensus on correct responses, the resulting pool of 34 items (26 true/false and 8 multiple choice) was compiled into an online questionnaire using SelectSurvey software. The questionnaire instructions requested that respondents state if an item was not clear and then to select the correct answer. Individuals aged over 18 years and living in the UK with personal, professional or academic expertise in autism were recruited through social media, snowballing, and autism research networks (both formalised networks and informal networks, i.e., individuals sharing the survey with people within their personal networks related to autism research). 56 experts within the autism field completed the questionnaire. Participants received no compensation for participation. Participants were included in the sample as ‘experts’ if they had two or more of the following: qualification relevant to autism at degree level or higher (self-defined); work experience of two years or more with significant contact with autistic people (self-defined); personal diagnosis of autism; diagnosis of autism in a close family member or close friend. Items which did not achieve greater than 80% consensus on the ‘correct’ answer were removed ( n = 5). Where ≥ 20% responses were rated as ‘not clear’, the item was either reworded or removed ( n = 5). In addition, to simplify the questionnaire design and scoring, eight multiple-choice questions ( n = 8) were converted into true/false questions ( n = 12). This process resulted in an item pool of 38 true/false items.

Administration of Items with Lay Sample

The pool of 38 items was then administered to a lay sample (a sample of people within the community irrespective of their expertise in autism). 221 participants were recruited via online purposive opportunity sampling (general [non-autism-related] social media networks, such as Facebook groups established to bring together people within a specific UK geography). Social media posts invited people with no particular interest in or connection to autism to complete a questionnaire designed to assess knowledge of autism to help us see how well it is pitched for people who are not specialists in autism. Interested individuals then clicked a link through to the participant information sheet, consent form, affiliation questions, and draft questionnaire items. Participants were asked the same questions regarding any affiliation to autism as used in the ‘expert’ online questionnaire; details are provided in Table 2 . Participants received no compensation for participation.

Descriptive data for each item were computed. There was a high level of correct responding with 18/38 items (47%) showing ceiling effects, being answered correctly by ≥ 90% respondents. 197 participants (89%) correctly responded to over 80% of items (31 out of a total 38; M = 33.33; SD = 2.76). Due to the high level of correct responding, we deemed that this provisional pool of items was not performing well for this lay sample. Accordingly, we did not carry out any further analyses and, instead, took measures to develop a pool containing more difficult questionnaire items.

Measures to Develop More Difficult Items

Four steps were taken in order to produce a pool of more difficult questionnaire items:

The 18 items with ≥ 90% correct response rate were removed (for instance, “most children with autism lose acquired speech”)

Multiple-choice items were reinstated as they are less prone to correct guessing. This included items with a single correct response (signalled to the respondent by “choose one”) AND those with multiple correct responses (signalled to the respondent by “check all that apply”). Items ( n = 6) were combined or extended to convert into multiple choice questions ( n = 4; for example, “ASD is a mental health condition: True/False” AND “ASD is a neurodevelopmental disability: True/False” were combined into: “Autism is (choose all that apply)”. Some items did not lend themselves to conversion into multiple-choice and these were maintained in a true/false format.

Scoring was altered to reduce the risk of guessing artificially inflating total scores. For each question, a point was awarded for each correct response, and one point was awarded each non-selected incorrect answer. Each item also had the response option of “not sure” added to further deter participants from guessing answers. See the section below and Online Resource 1 for more information regarding scoring.

The autism experts from the original focus group (Table 2 ) were re-contacted and invited to generate ideas for additional questionnaire items to assess a more advanced understanding of autism. The group discussed potential items and decided on those to be added to the draft questionnaire. This new pool of items included both multiple choice ( n = 9; for instance, “Well-known psychological theories of autism include [check all that apply: cognitive disinhibition / double empathy problem / theory of mind / functional apathy / reduced central coherence]” and true/false ( n = 1; “Pica refers to eating or mouthing non-edible items”) formats.

This process generated a revised pool of questionnaire items with 15 true/false questions and 13 multiple choice items.

Expert Consensus on Clarity and Correct Responses (Revised Pool)

Experts within the autism field were recruited through autism research networks, social media and snowballing and invited to complete this new pool of items to assess clarity and establish consensus on correct answers. Expert status was assessed in the same way as for the initial pool of items (see above). 35 experts completed the item pool. They were all over 18 years of age and lived in the UK. 9 (26%) were autistic; 20 (57%) had an autistic close family member or close friend; 34 (97%) had worked for over two years in a job with significant contact with autistic people; 18 (51%) had a qualification related to autism at degree level or higher (with 10 (29%) with a PhD related to autism). Items remained in the questionnaire if experts met consensus of 70% or above for correct answers; this threshold was reduced from the 80% level applied in the first phase due to the need to include more difficult items (on which it would inevitably be harder to achieve consensus). Following this process, no entire questions were removed (all 28 questions remained), but five individual item responses were removed from multiple-choice questions due to not meeting the 70% consensus threshold.

Administration of Items with Lay Sample (Revised Pool)

The new pool of items was then compiled as an online questionnaire using SelectSurvey and a lay sample of participants was recruited by purposive opportunity sampling, repeating the procedure outlined in the section on ‘ Piloting of items with lay sample’ above. The lay sample consisted of 201 participants. Participants were again asked about their affiliation to autism. Please see Table 3 for summary of participant autism affiliations. Participants also self-rated on their autism knowledge on 0 (‘I have never heard of autism’) to 10 (‘I consider myself a world-leading expert on autism’) scale with a mean rating being 4.78 (SD = 1.81; range 1–9).

The 28 questions were first recoded into dichotomous items with each item corresponding to a specific response option for a given question. For every correctly selected option and every unselected ‘incorrect’ option, a score of 1 was given. For instance, for Question 1 “Autism is”, for which response options were (a) a neurodevelopmental condition (correct), (b) a learning disability (incorrect), (c) a mental health condition (incorrect), d) a neurodegenerative condition (incorrect), and e) not sure, a respondent can achieve a score between 0 and 4. When a respondent selects option (a) only, they are awarded the maximum total score of 4; a score of 1 for choosing the correct option (a), and an additional score of 1 for each non-selected incorrect option (b–d). If one of the incorrect response items (b–d) had been selected by the respondent, no mark would be awarded for that item.

A score of 0 was awarded for the entire question if the “not sure” response was selected. This results in five separate dichotomous items (select: 1, not selected: 0 for the correct options and the reverse for the incorrect ones) for Question 1, each corresponding to one of the response options. The derived dichotomous items were used in an item response theory model. The dichotomous items were also summed to create polytomous items, which were used in factor analysis with mixed data. To illustrate, in the case of Question 1, a correctly completed question had a score of 4 as a polytomous item.

Item Response Theory

The dichotomous items of KAQ were used in a two-parameter logistic model (2PL-IRT; Baker, 2001 ) to estimate the probability of a correct response to an item depending on one’s level of autism knowledge, denoted as theta (θ; Kamata & Bauer, 2008 ), and item characteristics, (also known as parameters, severity, discrimination ability, and information). The key parameters under item response theory (IRT) are difficulty and discrimination. The difficulty parameter (intercept), denoted as b , indicates the location of an item on the autism knowledge trait, where the probability of a correct response is 50%. Lower values of the difficulty parameter correspond to “easier” questions, and as such correct responses can be obtained from individuals at lower levels of autism knowledge. The discrimination parameter (slope), denoted as a , is analogous to factor loadings and describes how well an item can differentiate between those with different levels of autism knowledge. Higher values of the a parameter indicate greater ability of an item to discriminate between individuals with different levels of the autism knowledge and are reflected by steeper slope of the item characteristic curve (ICC). The reliability or measurement precision of an item to measure the underlying autism knowledge is characterised in IRT by the concept of information. Greater information corresponds to greater measurement precision, and it can be illustrated using the information function curve, which shows how the reliability of each item can vary throughout different levels of autism knowledge. The item information curve is the highest at the location of the difficulty parameter, since more discriminating ability provides more information.

The 2PL-IRT model was used to guide item selection with the aim of retaining items that are evenly distributed across a range of locations on the autism knowledge scale. Such a scale would allow for meaningful interpretations in group differences and change over time (Nguyen et al., 2014 ). The items were identified as problematic if they had low discrimination ability as indicated by low values of the a parameter.

There is little consensus in psychometric literature on the requirements of sample size for the estimation of IRT parameters (Edelen & Reeve, 2007 ). The requirements not only depend on test length but also on model complexity with more complex models requiring a larger sample size with current estimations for 2-PL models ranging from 250 to 500 participants (Drasgow, 1989 ; Harwell & Janosky, 1991 ; Stone, 1992 ). Due to the number of items in the scale (60 dichotomous items) and the number of participants in this study (N = 201), sample size requirements for the 2PL-IRT model were not met. To accommodate this, the 2PL-IRT model was run separately for correct options (for example for Question 1 it would be “A neurodevelopmental condition” item) and for distractors (“A learning disability”, “A mental health condition”, “A neurodegenerative condition”).

Dimensionality of KAQ-UK

Exploratory factor analysis (EFA) for mixed data was conducted on full lay sample (N = 201) using weighted least squares mean and variance adjusted (WLSMV; Muthen, 1984 ) in MPlus (Muthén & Muthén, 1998 ), which can accommodate a combination of categorical and continuous dependent variables in the model. The number of factors to be retained was guided by the number of eigenvalues above 1 (Guttman-Kaiser criterion; Guttman, 1954 ; Kaiser, 1960 ), and by comparing the number of sample eigenvalues that are larger than the mean of eigenvalues generated from 100 randomly simulated correlation matrices of both tetrachoric and polychoric correlations (parallel analysis; Horn, 1965 ). These results were visualised using Cattell’s ( 1966 ) scree plot. The factor selection process was coupled with evaluation of model fit while also taking into account the parsimony and interpretability of the solution (Vitoratou et al., 2023 ). A number of goodness of fit indices were used to evaluate model fit: the relative chi-square (relative χ 2 values below 2 or 3 suggest reasonable fit when coupled with other fit indices that are in acceptable ranges; Hoelter, 1983 , Hu & Bentler, 1999 ), Root Mean Square Error of Approximation (RMSEA values of below 0.05 indicate close fit; Steiger, 1990 , Browne & Cudek, 1993 ), Comparative Fit Index (CFI values greater than 0.95 suggest close fit; Bentler, 1990 ; Hu & Bentler, 1999 ), the Tucker-Lewis Index (TLI values greater than 0.95 demonstrate close fit; Hu & Bentler, 1999 ; Tucker & Lewis, 1973 ), and standardized root mean residual (SRMR values that are below 0.5 indicate close fit; Hu & Bentler, 1999 ; Kline, 2016 ). Items that did not have strong loadings (< 0.4) on the main factor were considered problematic and to be omitted.

Eight to ten responses per item are considered sufficient for generalised linear latent variables models (Kyriazos, 2018). Omitting items based on 2PL-IRT investigations resulted in 18 polytomous items (which equals to 47 items in dichotomised form), which totals to sample size requirements of at least 144 participants (376 for dichotomised items). The number of participants in this study allowed for exploratory factor analysis on polytomous items but was not sufficient for additional confirmatory methods explorations.

Internal Consistency Reliability

Internal consistency of the scale was evaluated on polytomous items using Cronbach’s alpha (α; Cronbach, 1951 ) and McDonald’s Omega (ω; McDonald, 1999 ). Guidelines for alpha and omega values recommend the values of > 0.70 as indicative of satisfactory internal consistency (Nunnally & Bernstein, 1994 ). The homogeneity of the items was further assessed using corrected item-total correlations (ITC; values below 0.2 and above 0.8 indicate an item to be redundant) and alpha/omega if item deleted (AID/OID).

Differences in Score Based on Affiliation to Autism

Participants indicated their affiliation to autism and were allocated to five distinct groups. To address overlaps in affiliations, a hierarchy was created which prioritised lived experience: (1) personal diagnosis of autism; (2) parent/guardian of autistic child(ren) or adult(s); (3) close friend or family member who is autistic; (4) a qualification relevant to autism at degree level or above; (5) a job with significant contact with autistic people. Participants with no affiliation to autism were pooled into a separate group. The differences in total scores between autism-affiliation groups were evaluated using one-way ANOVA with hoc-post tests. The analysis was conducted in MPlus (Muthén & Muthén, 1998 ), STATA (StataCorp., 2021 ), R version 4.3.1 (R Core Team, 2023) and SPSS (IBM Corp, 2021 ). Parallel analysis was conducted using the R package psych (Revelle, 2023).

Item Response Theory: Preliminary Investigations

The first step in the analysis was to run 2-PL-IRT on correct options to examine the probability of a correct response to an item. All items and item responses can be found in Online Resource 2. The estimated difficulty ( b ) and discrimination ( a ) parameters are presented in Online Resource 3, and the corresponding item characteristic curves and item information functions are depicted in Online Resource 4. The analysis showed 6 problematic items with respect to low discrimination ability which were omitted from further investigations. Item 7 (“A person’s facial features can help you identify whether or not they are autistic: False ”) was both the least discriminating and the least difficult item. Item 15 (“Unusual reactions to how things smell, taste, look, feel, or sound means a person must have autism: False ”) was the second least difficult item with low ability to differentiate between those with different levels of autism knowledge. The further least discriminating item with below average difficulty was Item 2 (“Autism is a brain based condition: True ”). With respect to the problematic items that had above average difficulty, Item 10 (“In identical twins, where one has autism, the chance of the other twin having autism is: 77–98% ”) was the most difficult item with very low discriminating ability. The further least discriminating items with above average difficulty were Items 9_2 (“Known causes of autism include: New changes or mutations in genes ”) and 12 (“Short sightedness happens commonly alongside autism: False ”). All 6 items had low information at all ranges of autism knowledge.

Two more items, 16 (“Aggression is not a defining feature of autism: True ”) and 23 (“Most autistic people need to know what to expect more than people who are not autistic: True ”), had below average difficulty and relatively low discrimination ability and information at below average level of autism knowledge, and were thus removed to balance out the number of easier items to more difficult items.

Item 14 (“All autistic people have a skill in which they particularly excel: False ”) and item 22 (“The percentage of UK autistic adults in full-time paid employment is around: 16% ”) were below and above average performing items respectively in terms of difficulty with relatively low discriminating ability. Further discussion amongst the authorship team highlighted that anecdotal feedback suggested that item 14 could be ambiguous and prone to misinterpretation by participants (for example, “skill” could be interpreted as day-to-day individual strengths rather than the intended interpretation of savant skills). Item 22 was considered too specific and to be potentially easily invalidated through future research. Therefore, these two items were further omitted.

With respect to distractors, Item 9_4 (“Known causes of autism include: Vaccinations in early childhood ”) was the most problematic item due to being the least difficult, having no discriminating ability and providing no information. This item has been already identified as problematic with 2-PL-IRT on correct options and removed. Three more items (I8_2, I11_2, I1_1) have been recognised as potentially problematic due to relatively low discriminating ability but were retained in factor analysis for further explorations. Please see Online Resource 3 for all 2-PL parameters for distractors.

Factor Analysis

Eighteen polytomous items underwent dimensionality investigations. The number of eigenvalues of the covariance matrix that were above 1 (5.22, 1.63, 1.59, 1.36, 1.10) suggested up to five factors according to Kaiser-Guttman criterion. Nonetheless, the close fit to the data was achieved with one-factor solution (relative χ 2 = 1.30, RMSEA [90% CI] = 0.039 [0.020, 0.054], CFI = 0.93, TLI = 0.92, SRMR = 0.102). Four items (I08, I13, I25, I26) did not load strongly (< 0.4) on their main factor, and each item was omitted from the model one by one. The goodness of fit indices of the resulting solution showed close fit to the data except for SRMR, which nevertheless indicated acceptable fit (relative χ 2 = 1.20, RMSEA [90% CI] = 0.032 [0.000, 0.053], CFI = 0.97, TLI = 0.97, SRMR = 0.097). All items had loadings of above 0.4 on the main factor. Exploring solutions with increasing number of factors resulted in more items not loading meaningfully on any factor and some items cross-loading on other factors. The one-factor solution was thus accepted (see Table 4 for loadings) and the final set of items underwent further item response theory investigations.

Item Response Theory: Final Items

2-PL-IRT was run on correct options for the final set of items identified through factor analysis (please see Table 5 for difficulty ( b ) and discrimination ( a ) parameters, and Fig. 3 for item characteristic curves and item information functions).

Item characteristic curves (ICC; on the left) and item information curves (IIF; on the right) for correct options ( A ) and distractors ( B ) for final set of items

The least and most discriminating items were Item 27 (“Medication has been proven to improve autism: False ”) and Item 24_5 (“Commonly used strategies to support understanding in autism include: Social Stories ”), respectively. This indicates that Item 24_5 relates to larger, and Item 27 to smaller, differences in autism knowledge between those who endorse these items and who do not. With respect to difficulty, the location estimates of the items ranged from -2.12 to 1.78, showing wide variation in item location. Item 28_1 (“Common adjustments for autistic children in school include: A quiet space ”) was identified as the least difficult and Item 6 (“One of the people who first described autism in the twentieth century was called: Leo Kanner ”) as the most difficult one. Items were evenly distributed across a range of locations on the autism knowledge scale. Specifically, 6 items (I28_1, I17, I3_1, I1_4, I28_3, I4) were endorsed at lower levels of autism knowledge (Θ = − 2 to ‒1), 7 items (I24_6, I19, I18, I20, I24_5, I27, I21_2) had average difficulty (Θ = − 1 to 1), and 6 items (I21_4, I11_5, I3_4, I5, I11_4, I6) targeted higher trait levels of autism knowledge (Θ = 1 to 2), thus all items working together to represent a continuum of the trait. The information function curves were derived for each item, which indicated that Item 28_1 (“Common adjustments for autistic children in school include: A quiet space ”) provided the most information for those with lower levels of autism knowledge, Item 24_5 (“Commonly used strategies to support understanding in autism include: Social Stories ”) was most informative for people of average knowledge, and Item 6 (“One of the people who first described autism in the twentieth century was called: Leo Kanner ”) provided the most information for high scorers.

In regard to distractors, the item with best discrimination ability was I3_6 (“Other names that have been used for types of autism are: Williams Syndrome ”), and item 11_2 (“Well known psychological theories relating to autism include: Functional apathy ”) was the least discriminating. The difficulty parameter ranged from − 1.97 to 1.54, with the least difficult item being Item 28_4 (“Common adjustments for autistic children in school include: More unstructured group work ”), while the most difficult one being Item 11_2 (“Well known psychological theories relating to autism include: Functional apathy ”). The information function curves for each item showed Item 3_6 (“Other names that have been used for types of autism are: Williams Syndrome ”) to be the most informative for those at lower levels of the trait, and Item 21_5 (“Which of the following features of language are sometimes found in autism: Verb inversion ”) had the greatest measurement precision for people with average to high levels of autism knowledge.

Cronbach’s alpha and McDonald’s omega indicated satisfactory internal consistency, 0.714 and 0.733, respectively. No problematic items were identified with respect to corrected item-total correlations (0.263–0.506), and alpha (0.671–0.709) and omega (0.685–0.727) if item deleted.

There was a statistically significant difference between affiliation groups on the total score of KAQ-UK ( F (5,195) = 6.534, p < 0.001). A post-hoc test (Tukey’s HSD) determined that parents of autistic people scored significantly higher than participants with no affiliation and those with autistic family member or a close friend. There were no further significant differences in total scores between the affiliation groups. Please see Table 6 for descriptive statistics and post-hoc tests.

Associations Between Actual and Perceived Autism Knowledge

There was a moderate positive significant correlation between self-perceived autism knowledge, and total score on the KAQ-UK ( r = 0.39, p < 0.001). A Pearson’s r correlation test revealed that the higher participants perceived their knowledge of autism to be, the higher their overall total score on the KAQ-UK.

This study aimed to develop and provide initial validation of a questionnaire of autism knowledge suitable to the current UK context. After a detailed item development process and initial psychometric investigations, we provide preliminary support for the validity of a 14-item questionnaire called the Knowledge of Autism Questionnaire-UK (KAQ-UK, see Online Resource 1 for the questionnaire and scoring guidelines). This questionnaire can be used to assess between-group differences in autism knowledge or to evaluate the impact of specific education, awareness-raising, or training activities on improving autism knowledge over time. Further evaluation and validation of its measurement properties are required.

Strengths of the KAQ-UK

The new questionnaire has a number of strengths. First, it is brief (14 items) and therefore acceptable to be administered within a wider assessment battery without being too burdensome. Second, the item pool was generated and evaluated through an iterative development process with involvement from a range of experts with both personal and professional experience in autism. This has resulted in a questionnaire that holds face and content validity and is up-to-date and acceptable to a range of stakeholders in both its content and language. The questionnaire reflects contemporary understanding of the diversity of the autism spectrum and is focused on UK knowledge and practice, which can be different to US understanding and practice, and one of the main reasons that previous questionnaires (e.g., Harrison et al., 2017a , 2017b ; McClain et al., 2019 ) were deemed unsuitable.

Third, we have paid close attention to two inter-related issues: (1) that the questionnaire is pitched at the right level of difficulty, and (2) that items can be evidenced as (almost) universally true or false. The initial stages of our development process highlighted that there was a better general understanding of autism within the lay validation sample than we had anticipated and therefore the first draft questionnaire showed ceiling effects. Consequently, we took measures to increase the difficulty of questionnaire items and reduce correct guessing. This included adding multiple choice questions and a ‘not sure’ response option. The heterogeneous nature of autism can render it difficult to isolate ‘true facts’ which hold across diverse presentations and experiences, and which can be universally evidenced as true or false. This presents challenges to questionnaire item generation. Many general statements of fact are difficult to evidence as true in all individual situations (e.g., autistic people can learn to drive). Loosely worded items (e.g., some autistic people can learn to drive) are easier to evidence as true or false but are prone to correct guessing and can therefore artificially inflate scores. All these factors taken together present challenges in developing questionnaire items that differentiate higher levels of knowledge (e.g., McClain et al., 2019 ; Stronach et al., 2019). To address these challenges, we carried out careful consensus with autism experts, to be confident in our decisions about correctness and incorrectness. In addition, we included KAQ-UK questionnaire items which are more ‘technical’ (e.g., the true/false item ‘Pica refers to eating or mouthing non-edible items’). To assess the KAQ-UK’s ability to differentiate between levels of knowledge, the 2PL-IRT analysis suggested that the 14 items on the final KAQ-UK were evenly distributed across low, average, and high trait levels of autism knowledge. These more technical items are therefore important to discriminate those with the highest levels of knowledge.

A further strength of the questionnaire is its thorough initial psychometric assessment. This is of particular significance given that previous research has shown that 57% of autism knowledge assessments have weak or no psychometric support (Harrison et al., 2017a , 2017b ). The current study assessed the psychometric properties of the KAQ-UK in a number of ways. First, a 2PL-IRT model was employed to examine the difficulty, discrimination, and reliability of each item separately. Six items were removed due to lack of discrimination value and low information, suggesting low ability of the items to differentiate between people at different levels of knowledge and poor measurement precision for all ranges of autism knowledge. Two further items were removed due to low difficulty, discrimination, and information. As a result, the number of easier items to difficult became more balanced, thus reducing the risk of ceiling effects, with which autism knowledge assessments are commonly affected (for instance, Kuhn & Carter, 2006 ). Second, the dimensionality investigations revealed a one-factor model of the questionnaire that represents a single construct of autism knowledge. At this stage of analysis, four items were identified as not meaningful indicators of the knowledge of autism and were removed from the questionnaire. Further psychometric analysis showed satisfactory reliability estimated for the scale, indicating interitem consistency within the measure.

To assess discriminative validity of the tool, we asked the lay validation sample to indicate their affiliation to autism across several categories. This provided preliminary support discriminative validity. The scores of parents/carers of autistic people were significantly higher than those with no affiliation to autism, and those with an autistic close friend or family member. As we would expect parent/carers of autistic people to be more knowledgeable about autism than those with no or a looser affiliation to autism, this finding is reassuring. However, we did not observe significant group differences between scores obtained by people with no affiliation to autism, and those who worked in jobs with significant contact with autistic people, or had qualifications related to autism. The current study did not collect information regarding type of job or qualification, nor were the category descriptions operationalised for participants. As a result, poor group ascertainment may have affected the analysis of affiliation group differences of autism knowledge. Further exploration of discriminative validity is needed in future studies with more accurate categorization of individuals based on their autism-related qualifications to solidify these findings. Furthermore, the current study was unable to assess between group differences in scores obtained by autistic people. As only 7 participants within the lay validation sample reported that they were autistic themselves we were unable to assess between group differences in scores, due to low statistical power.

Furthermore, we also assessed if self-perceived autism knowledge was related to actual knowledge. Our results showed that overall scores on the KAQ-UK are positively related to self-perceived knowledge for the lay validation sample as a whole. We therefore believe this could act as a potential proxy for concurrent, convergent validity when no other similar measures are available.

Limitations of the KAQ-UK

This study comes with limitations, primarily attributed to a limited sample size that did not allow for confirmatory factor analysis to be performed to evaluate the support of the factor structure derived from EFA. Additionally, the assessment of criterion-related validity was lacking. There is no ‘gold standard’ tool in this area and we decided to develop a questionnaire precisely because there were no other up-to-date UK-focussed questionnaires available. As a result, we cannot make claims regarding how the KAQ-UK’s compares to similar autism knowledge measures. Another limitation is that we have limited demographic information, such as gender, age and socio-economic class, of our lay validation sample, plus we relied upon social media and snowballing recruitment methods which can result in sampling bias. These factors make it difficult to make statements about representativeness and to evaluate if the measure and its results are fully applicable to the general population. Further validation of this new questionnaire is required before we can make confident statements about its performance within the general population.

Furthermore, as prompted by an anonymous reviewer of this work, the authors acknowledge that the term “I don’t know” can be read as a non-response option, therefore we suggest in future research and use of this scale this be replaced with the term “that is not within my knowledge”.

Further research is required to assess the appropriateness of this questionnaire for targeted groups and to evaluate its sensitivity to change over time and to detect important changes that result from awareness-raising campaigns or interventions. The inclusion of items which discriminate different levels of knowledge, as shown by item response theory, suggests that there may be scope to detect improvement over time. The KAQ-UK is currently being used in a large randomised controlled trial to evaluate the change in parent autism knowledge following a new post-diagnostic psychoeducation programme (REACH-ASD trial; Leadbitter et al., 2022 ). This will allow examination of the performance of the KAQ-UK with a more targeted group (parents and carers of children recently diagnosed with autism), its ability to detect change over time and the evaluation of whether the unidimensionality of the measure is supported in a new sample using confirmatory factor analysis. Anecdotal feedback from within this trial suggests that many parents/carers found the questionnaire acceptable and enjoyed completing a ‘quiz’ about their autism knowledge.

In conclusion, the KAQ-UK is a brief 14-item assessment of UK-centred autism knowledge that has face validity and satisfactory psychometric properties. The questionnaire shows promise in being sensitive to change over time, although further validation is required. The KAQ-UK can be used across a variety of settings with a range of respondents to assess knowledge of autism. The questionnaire and scoring guidelines are freely available in Online Resource 1.

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Acknowledgments

The team would like the thank all of the experts who so generously gave their time and insight to contribute to the development of the questionnaire. We would also like to thank the participants who completed draft versions of the questionnaire. In addition we thank the National Institute of Health and Care Research Health Technology Assessment Board (reference number 17/80/09) for partially funding time of SL and KL to work on this study. SV and NUM were partially funded by the Biomedical Research Centre for Mental Health at South London and Maudsley NHS Foundation Trust and King’s College London. NUM is funded by the NIHR [Doctoral Fellowship (NIHR302618)].

The funding body played no role in the design of the study; the collection, analysis, and interpretation of the data; or in the writing of this manuscript. The views expressed are the authors’ and not necessarily those of the NIHR or the Department of Health and Social Care. Thanks also go to Prof. Jonathan Green for helpful comments on draft manuscript.

For the purposes of open access, the author has applied a Creative Commons Attribution (CC BY) licence to any Accepted Author Manuscript version arising from this submission.

This work was supported by National Institute of Health and Care Research, Health Technology Assessment Programme [Grant Ref: 17/80/09] and NIHR302618, awarded to Nora Uglik-Marucha.

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Study conception and design were performed by Kathy Leadbitter, Elena Lieven, Charlotte Broadhurst, and Sophie Langhorne. Material preparation, data collection and analysis were performed by Sophie Langhorne, Charlotte Broadhurst, Nora Uglik-Marucha, Silia Vitoratou, and Amelia Pearson. The first draft of the manuscript was written by Sophie Langhorne and Nora Uglik-Marucha. All authors commented on previous versions of the manuscript. All authors read and approved the final manuscript.

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Langhorne, S., Uglik-Marucha, N., Broadhurst, C. et al. The Knowledge of Autism Questionnaire-UK: Development and Initial Psychometric Evaluation. J Autism Dev Disord (2024). https://doi.org/10.1007/s10803-024-06332-3

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University of York Department of Biology. Neurofibromatosis type 1 (NF1) is among the most common monogenetic disorders of humans and patients show a high prevalence of Autism Spectrum Disorders. Read more. Supervisors: Dr I Hahn, Dr W Brackenbury. 30 June 2024 PhD Research Project Self-Funded PhD Students Only.
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Explore intellectual disabilities and autism in depth on Warwick's MPhil/PhD in Intellectual and Developmental Disabilities. The Centre for Research in Intellectual and Developmental Disabilities (CIDD) is an internationally recognised research centre specialising in intellectual and developmental disabilities and autism, across the lifespan.
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We are also indebted to our initial 2009 funders, alongside the Pears Foundation, the Clothworkers Foundation and the Kirby Lang Foundation we are thankful of the support of Ambitious about Autism, Autistica, The Bloomsbury Colleges, The British Academy, Economic and Social Research Council, European Research Council, UCL Grand Challenges, and ...
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In November 2015 The Baily Thomas Charitable Fund launched its Baily Thomas Doctoral Fellowships. There has been a high level of interest and number of applications, with the following studies supported to date:-. "An investigation into the role of attentional control in autism spectrum disorders" being undertaken by Iti Arora at the University ...
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Autism is a common and heterogeneous neurodevelopmental condition, affecting around 1.7% of the UK population (Roman-Urrestarazu et al., 2021).Public awareness of autism has somewhat improved over recent decades, with UK polls suggesting that 99.5% of people have heard of autism (NAS, 2015).However, research suggests that only 16% of autistic people in the UK feel understood by the public ...
University of Birmingham CENTRE-UB PhD Studentship 2024 in UK
Application Procedure for University of Birmingham CENTRE-UB PhD Studentships.: Deadline. The deadline to apply for a PhD studentship with CENTRE-UB is fast approaching - Thursday, May 16th, 2024 at 5:00 PM. If you're eager to delve into cutting-edge research on behavior, here's how to get started: 1. Find Your Perfect Project:

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