Exploring Neurodiversity within Recovery Education and Lived Experience Recovery Based Settings: A Scoping Review Protocol

Introduction

Neurodiversity is a social movement and term used to describe ‘the idea that people experience and interact with the world around them in many different ways; there is no one “right” way of thinking, learning, processing information and making sense of the world and as such, those differences are not viewed as deficits but natural variation of the human genome¹. The term, first coined by Judy Singer in 1998, encompasses the neurotypical brain, those brains that do not differ neurologically from each other and neurodivergent brains, those brains that differ from neurotypical brains in significant ways. Many of those neuro differences can be found within the ICD-11 [International Classification of Diseases - 11] and DSM5-TR [Diagnostic and Statistical Manual of Mental Diseases 5 Text Revision] manuals, and include conditions like Autistic Spectrum Disorder [ASD], Attention Hyperactivity Deficit Disorder [ADHD], Tourette's Syndrome, Dyscalculia, Dyslexia and Dyspraxia, as well as other conditions such as Learning Disabilities and disorders deemed psychiatric due to their related psychopathology². The movement behind the term originally emerged during the late 1990’s, with the goal of fostering a sense of community and acceptance for people with said conditions, as well as challenging the clinically accepted idea that all of these conditions are inherently deficits by arguing that ‘there's no definition of “normal” capabilities for the human brain’³. Instead just different strengths and difficulties which we all have as humans, while acknowledging the need for support as the wider world is built for neurotypical brains - individuals with typical neurological development.

While statistics vary, it is thought that 20% of the population are neurodivergent with figures such as 8% of people in the UK being thought to have ADHD, 10% of the same population are thought to have dyslexia, 8% are thought to have dyspraxia, 6% are thought to have dyscalculia, 1% of people are thought to have an autistic spectrum condition, whilst 1% of the UK population are thought to have Tourette's syndrome⁴. Research shows that there is a strong link between neurodivergent conditions and mental health challenges. Mood disorders, anxiety disorders, substance use disorders are high in individuals with ADHD and ASD⁵. It is thought that as many as 54–94% of autistic individuals^6,7 develop a mental health condition within their lifetime, compared to just under 50% in the neurotypical population⁸. In adult ADHD, The National Comorbidity Survey Replication (NCS-R) found a prevalence of 47% of anxiety disorders, 38% of mood disorders, 20% of impulse control disorders and 15% of substance use disorders⁹. With these figures in view, the aim of this research project is to explore the role of recovery education in a particular mental health recovery setting - Recovery Colleges - and how such settings are equipped to support neurodivergent students and meet their needs while providing a sense of community, empowerment and a strengths based approach.

Recovery Education is defined as “a personal journey of discovery… making sense of, and finding meaning in, what has happened”¹⁰. The concept of Recovery Education is based in the belief that an individual must have a sense of agency in their care and recovery journey, they are the experts of their own lives, and are able to build a life with a sense of purpose and pride. personal recovery as a wider concept in mental health is about finding alternatives to exclusively symptom-based approaches to mental health care and aligning services and support for the individual to have a fulfilling life¹¹. In practice, in the UK, the most common application of recovery education has been within Recovery Colleges, with around 220 Recovery Colleges now found in the UK alone¹², with a college present within 26 different countries¹².

Recovery Colleges use an adult educational pedagogy to inform and support individuals with mental health challenges¹³. They focus on providing educational courses about mental health and recovery, personal development, and skills training, in a co-produced manner in order to empower and inspire individuals to manage their own recovery journey more effectively. The ethos of Recovery Colleges is centred around hope, empowerment, and opportunity. They provide a co-productive and supportive learning space where individuals can gain knowledge and skills to support their recovery and well-being. Recovery Colleges also incorporate peers: individuals with lived experience of specific mental health challenges, who use their experiences in order to co-produce and co-facilitate said courses.

While different Recovery Colleges may have different styles and formats of delivery, they are generally underpinned by several key principles similar to that expressed within an individual’s personal recovery journey, Strengths-based approaches to recovery, an educational approach, inclusivity and accessibility of all, meaning that courses are fully open-access in an attempt to promote wider awareness of mental health, and allowing everyone present within a recovery journey to attend courses they have an interest in, including service users, family members, friends, and mental health professionals. A central element of Recovery Colleges is the principle of co-production. This means that students, professionals, educators, family members and other stakeholders work together in an equal and reciprocal partnership in order to design, deliver, and evaluate training programmes¹⁴. Co-production ensures that the courses are relevant, practical, and grounded in both academic knowledge and lived experience of recovery from mental health issues. This collaborative approach fosters a renewed sense of ownership, empowerment, and community among participants. Exploring co-production within mental health is not new. It has been used within mental health services since the idea of recovery education was first constructed. However, there is no real literature base at present describing the co-production process when collaborating with those who identify as neurodivergent. Are there unique needs? Is the mechanism of action for co-production different when working with those who identify as neurodivergent? All of these questions and more need to be answered in order for one to understand how a neuro inclusive spaces co-created within recovery colleges can be present and function within a mental health context in the UK and elsewhere.

Methods

To support rigour in this investigation, this proposed scoping review will comply with the relevant Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) guidelines for scoping reviews¹⁷ (See Supplementary Material One). In addition, the review will also incorporate the methodological orientation created by Arksey and O’Malley, which comprises of five steps that can be used to search and structure a scoping review¹⁸. These steps include 1) identification of the review question(s), 2) identification of the relevant studies, 3) selecting the studies, 4) charting the data and finally 5) collating, summarizing and reporting the results¹⁹. Finally, this protocol was registered with the Open Science Framework (OSF) on the 27^th June 2024 and assigned the following registration number: https://doi.org/10.17605/OSF.IO/853K2. Such registration will be updated once this protocol is published. The use of specific reporting guidelines, along with a methodological guideline specific to the method of scoping reviews and the publication of this protocol identifying how this proposed scoping review will be conducted all helps to ensure that the results attained by this proposed scoping review are rigorous²⁰. The five stages of Arksey and O’Malley’s methodological framework for scoping reviews are now presented.

Stage three: study selection

In order to search such databases and repositories noted in stage two, a number of search terms/MeSHs need to be created. These search terms are based on the already established terms used in the peer reviewed literature - evident from previous systematic reviews that examined neurodiversity and recovery colleges separately, and with consultation with the established research advisory group for the overarching project. Such terms include the following:

“neurodiversity” OR “neurodiverse” OR “neurodivergent” OR “neurominorities” OR “neurotypes” OR “neurotypical” OR “neurovariance” OR “neuroinclusive” OR “neuroidentities”

AND

“recovery education” OR “recovery college” OR “recovery education service” OR “discovery college” OR “discovery project” OR “recovery learning” OR “recovery learning community” OR “recovery academy”

AND

“lived experience” OR ”peer support” OR “expert by experience” OR “experiential knowledge” OR “peer education” OR “peer educator” OR “peer to peer support”

In order to shortlist papers retrieved from the databases and repositories, three intricate rounds of screening will occur. In round one, the titles of all citations will be screened for keywords by the first author: MJN. Any citation that utilises the words neurodiversity and recovery education will be saved and stored in the round one folder. Round two then begins by placing all round one search results into a round two folder. Here duplicates are removed. After which, the abstracts are read and compared to an inclusion/exclusion criteria - see Table 2 below.

Table 2. Inclusion/Exclusion Criteria.

Inclusion	Exclusion
Peer reviewed and Grey literature [guidance document, reports] Master through Research/Doctoral Dissertations	Opinion, perspective, letter to the editor, observational study.
English Language
Quantitative, Qualitative and Mixed Methods Studies
1998 to Present Rationale - Recovery Colleges and neurodiversity as concepts were established.
Mental Health, Intellectual Disability [ for example Autism spectrum, learning disability]

If the citation’s abstract complies with the inclusion/exclusion criteria, they are placed into an included folder, with all other citations not meeting the criteria excluded from the study. For this round of screening, all four authors [MJN, WG-P, LL and OZ] will each carry out this round independently and then meet together in order to agree on the papers to be included in round three screening. At this point a reference screening or process of citation chaining will occur on the reference lists of all included papers to this point. Here, the parameters set forth above in terms of round one and two screening will be adhered to. MJN will independently carry out the citation chaining exercise and will draw on the expertise of WG-P, LL and OZ if he is unsure if a paper should be included or not. Once this process is complete, citations undergo a third round of screening, where the full text of papers are downloaded, read and compared to the inclusion/exclusion criteria yet again. Any papers that adheres to the inclusion/exclusion criteria are at this point included in the scoping review, with the remainder excluded with a rationale as to why, included in the search strategy. For round three screening, all authors [MJN, WP-G, LL, OZ] will read each paper independently and then reconvene in order to decide on the final papers for inclusion based on the preconceived inclusion/exclusion criteria. Once the three rounds are completed, the search strategy will then be kept and submitted with the review itself as supplementary material to a peer reviewed journal for publication. This process of narrowing down papers will be visually represented through a PRISMA flow chart (Figure 1)²⁷.

Figure 1. Updated PRISMA 2020 Flow Chart.

As per Table 2, a time period of 1998 to present (December 31st 2024) will be applied as the term neurodiversity was first coined by Judy Singer in 1998. Additionally, recovery colleges as a concept was also not created until 1998. Finally, only English papers will be included in this review due to the inability of the review team to speak or understand other languages.

Ethics and dissemination

This paper and its future counterpart represents both a protocol for and a scoping review of the literature pertaining to neurodiversity and recovery education. As this process requires the reviewer to examine previously collected data through publication and does not directly involve human participants, ethical approval is not required. Any information pertaining to this review will be stored in the OSF registry, where it is freely available to any interested party. The results of this scoping review will be distributed through peer reviewed publication in a high ranking academic journal. Additionally, data collected from this review will also be used to support a wider research project pertaining to neurodiversity and recovery education, which will also be distributed through peer reviewed open access journals.

Discussion

Like with any review, there are several strengths and limitations to the proposed scoping review. Firstly, a strength to this proposed review is that it begins to address a notable research gap in this area. The lack of peer-reviewed papers exploring both recovery education and neurodiversity indicates that this is an underexplored field. By examining existing literature, the review will shed light on how recovery colleges can better support neurodivergent students, contributing valuable insights to both policy and practice. This paucity may also serve as a limitation around the study as the lack of research makes finding existing research into this area difficult. However, this review is necessary for the wider research project being conducted in this area as it will demonstrate the breadth of the evidence, empirical, policy and practical, so that lessons can be learned and applied to the overarching project itself.

Additionally, the review aims to gather evidence to inform the development of guidelines and recovery educational programs that are tailored to support neurodivergent students. This aligns with the increasing emphasis on inclusivity and diversity in education and mental health services, promoting empowerment and personal responsibility in a neuro-affirming way. As a result, it aligns well with the objectives laid out by the United Nations Convention on the Rights of the Person with Disabilities (UNCRPD) in ensuring that those designated to having a disability have access to appropriate resources regardless of whether one is neurotypical or neurodivergent³⁰.

Co-production is indeed a strength in both this proposed scoping review and within the entire overarching research project. This protocol and indeed the proposed review itself will be fully co-produced with individuals who identify as neurodivergent and those who work in this space by their integral involvement in the research advisory group (RAG), as noted in the authorship of this present paper. By undertaking this review, data will be uncovered that will also support the co-production of practical guidelines for neuro-inclusive practices in recovery colleges. As such, with the inclusion of the research advisory group in all aspects of the review and overall project development, this research has the ability to have the full backing of the neurodivergent community in the UK. The result of which can lead to a more effective and supportive environment being created in such spaces for neurodivergent individuals, thereby enhancing their educational and recovery outcomes.

Additional to the many strengths of this proposed review, we do acknowledge that there are a number of limitations to this work. Firstly, as outlined previously, the potential scarcity of studies; the lack of prior known research on neurodiversity within recovery colleges may result in a limited number of sources to review, which could call the feasibility of this review into question. As mentioned, however, this potential lack of sources does also come as a strength, demonstrating a need for the wider research project to be conducted in this area. Secondly, although this proposed review is valuable for mapping out the breadth of evidence available in this area, it does not engage in the same depth of analysis as would a systematic review. Although Levac and colleagues additions to Arksey and O’Malley’s framework does create a window for such depth to be explored, the decision was made not to examine issues that would suggest depth (like risk of bias and quality assessments) as this would deter from the main purpose of this review, which is to identify the evidence base for the subject matter and not the quality of that evidence. However, despite this, this decision means that while the proposed review will identify key gaps, it may not provide detailed insights into specific outcomes.

Ethics and consent

Ethical approval and consent were not required.