More than one in 100 people are autistic and there are at least 700,000 autistic adults and children in the UK (1). There has been a growing awareness of the concern expressed by autism communities that most of the research conducted does not reflect the priorities or needs of autistic people and their families. Many autistic people report that they feel unable to influence research and would like greater involvement in the research process (2).
Autistic adults often have poorer quality health outcomes than neurotypical individuals (3). These health inequalities are influenced by many complex factors, but people’s experience of school and work are critical. Yet, less than half of autistic children are reported to be happy in school and only 16% of autistic adults are in full-time employment, suggesting that the mainstream offer is not working for many of those who are neurodiverse (3).
I painted myself because I started to like myself more and so I wanted to paint this picture of me and I’m happy because I’ve got a smile on my face … Oh yeah it really has because I got friends here and no one’s bullied me here which is kind of a first for me
Please note that the terminology we use in this article aligns with guidance from the National Autistic Society and The Brain Charity.
Autism: Autism spectrum disorder is the official way of describing autism but many autistic people and families feel that the term ‘disorder’ carries negative connotations. Autism is a difference rather than a disorder.
Autistic person: ‘identity first’ language recognises being autistic as integral to who the person is, not something they have.
Neurodiversity: Neurodiversity is the concept that everyone’s brain is unique, and these variations are natural.
Neurodiverse person: someone whose brain functions differently to what is considered more typical.
Neurotypical person: Neurotypicality is used to describe people whose brain functions, ways of processing information and behaviours are seen to be standard.
Adopting approaches that foster inclusivity and facilitate participation in the full evaluation process – design, data collection and reporting – is key to ensuring that evaluations reflect the needs of individuals and communities and therefore inform meaningful service development and improvement.
A co-design approach ensures that research is representative of the community it is designed to serve. The approach brings together people with relevant skills and people with lived experience, to help build insights and place the voice of service users at the heart of the process.
Placing co-design at the heart of our evaluation work
At Health Innovation East, we placed co-design at the centre of our approach to two recent evaluations. In doing so we ensured that neurodiverse individuals and their families could contribute their opinions and experiences of the following services:
Our evaluation approach
In order to involve autistic people in both evaluations, we invited autistic individuals to form a co-designed advisory group to guide them.
The group was selected based on their experience of autism, experience as a parent to an autistic child(ren) in education, and experience conducting or supporting research with autistic people.
The Hertfordshire Neurodiversity Offer provides specialised psychoeducation support for neurodivergent children and young people (CYP), along with their families and primary carers. The support includes group-based activities and one-to-one support from five organisations delivering the interventions as part of a framework agreement. Additionally, digital and online support services are available, including an app.
The National Autistic Society’s Autism Specialist Award is a national accreditation programme designed to promote best practice in supporting autistic children and young people in mainstream and specialist schools.
Co-production and early engagement with individuals and organisations allows more meaningful and impactful evaluation
Early collaboration enables the collection of diverse perspectives, fosters a sense of ownership among participants and ensures that the evaluation framework aligns closely with the needs and expectations of partners. Through this approach we found we were able to generate more comprehensive and actionable insights, ultimately enhancing the relevance and impact of our evaluations.
Evaluations should involve diverse populations, including adults, children and young people to ensure a variety of experiences and viewpoints are collected. Each group has unique needs, and it is crucial to adapt evaluation or service delivery methods accordingly. For instance, young people may respond better to interactive and visually engaging methods.
Traditional data collection methods may not always be suitable for neurodivergent individuals. To ensure accessibility and engagement, we employed a mixed-methods approach that combined qualitative and quantitative techniques while incorporating creative adaptations to meet participants’ diverse needs. Creative data collection techniques were important for enabling participation in the co-design, allowing neurodivergent children and young people to share how services support them, embracing their uniqueness to set them up for success.
Collaboration is key. We worked with charities and organisations experienced in neurodiversity, such as ADD-Vance, Autism Oxford, CathARTic, COGS AI, NESSie, and SPACE, to design surveys and other data collection tools. Dr. Sophia Christophi of SPACE Herts, who has significant experience in surveying neurodivergent children and young people, provided valuable input to refine the research being conducted to ensure it suited neurodivergent people. Thanks to contributions from partners above we were able to enhance the accessibility of our surveying methodologies enabling non-verbal children and young people (CYP) to participate more effectively.
To enable us to capture diverse perspectives, we utilised diverse approaches.
One size does not fit all. It is critical to apply methods flexibly, adapting them to individual needs by offering different formats for participation, flexible timelines, and varied communication styles. This personalised approach fosters trust, encourages greater engagement, and facilitates gathering information and insights from participants no matter what their communication and involvement needs are.
Working with organisations that understand the context, setting and individuals they are working with as well as the needs of the organisation is also vital. For example, working with schools that know how to support inclusion for individuals with high needs and have existing processes and support in place.
The language used in evaluations matters. Prioritise terminology that respects and aligns with the preferences of the community you are working to support. For example, we used identity-first language (e.g., “autistic person”) when preferred, and avoided deficit-based narratives (e.g. viewing cognitive differences as disorders or deficits).
– Engage neurodivergent individuals from the outset – Involve them in planning, data collection, and analysis.
– Be flexible and adaptive – Allow for alternative participation formats.
– Use multiple and creative methods – Combine surveys, interviews, and creative approaches.
– Ensure accessibility – Provide clear instructions, visual aids, and sensory-friendly environments.
– Respect language preferences – Consult with neurodivergent communities about terminology.
By bringing co-design into our evaluations we can ensure our research has meaningful impact for the communities it is designed to serve. Neurodiverse individuals provide a range of perspectives and experiences and we need ensure they are incorporated into our work.
Find out how we can work with you here, or contact our real-world evaluation team: evaluations@healthinnovationeast.co.uk
References:
(1) National Autistic Society. (2025). What is autism?. [Online]. autism.org.uk. Available at: https://www.autism.org.uk/advice-and-guidance/what-is-autism [Accessed 11 April 2025].
(2) Gowen E, Taylor R, Bleazard T, Greenstein A, Baimbridge P, Poole D. Guidelines for conducting research studies with the autism community. Autism policy & practice [Internet]. 2019 Sep 9;2(1 A new beginning):29–45. Available from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7099931/
(3) Weir E, Allison C, Baron-Cohen S. Autistic adults have poorer quality healthcare and worse health based on self-report data. Molecular Autism. 2022 May 26;13(1). Available from: https://molecularautism.biomedcentral.com/articles/10.1186/s13229-022-00501-w
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