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My research journey with neurodiversity and the value of patient engagement

Early support for young people with neurodiversity is key to helping them and their families develop crucial skills needed to live a happy, healthy, and successful life. Despite progress in the understanding of neurodiverse conditions like Attention Deficit Hyperactivity Disorder (ADHD) and Autism Spectrum Disorder (ASD) there are still cases where young people “fly under the radar”, don’t meet diagnostic thresholds or experience long waiting times due to high demand. This can cause increased feelings of anxiety, isolation, and frustration within families. Even if a traditional neurodevelopmental label is provided, these have shown to be associated with stereotypical symptoms either over or underestimating the abilities of the young person, and potentially a negative bias.

To consider this issue a partnership of clinicians, educators, parents and young people in Portsmouth came together to discuss possible solutions and barriers. Conclusions were developed and the newly formed steering group drafted out materials, and an idea called the Neurodiversity Approach. The approach has a training manual, behavioural tables, a profiling sheet, and a psychoeducational resource pack.

The term “Neurodiversity” was first coined by Sociologist Judy Singer, referring to the natural variation observed in the human brain. The aim of the neurodiversity movement, and this approach, is to promote the acceptance of and display the advantageous behaviours of those who are neurodivergent (e.g. ASD, ADHD, Dyslexia), whilst simultaneously de-pathologizing these divergent behaviours. However, when conducting a literature review for this project, I could not find a formal or structured approach which uses this philosophy in neurodevelopment.

In April 2020 I was hired to formulate a research roadmap for this new way of working. Despite feeling that I had been thrown into the deep end with already set deadlines and high expectations, I learnt to “swim fast”. The first step was to understand the philosophy of the approach and material. This included meetings with professionals, families, and young people with lived experience of neurodevelopment to understand their priorities, and to find a suitable middle ground for material development which would be workable for professionals and families.

The inclusion of public participation shifted my beliefs about how research should be conducted. My experience at university and the private sector had installed in me a top-down technocratic structured approach that the "researcher knows best" (because well, we have spent years learning about all this theory and what top quality research is). How wrong I was. Through public participation, I encountered unseen barriers to research, and how sometimes we can “miss the point” and steer research towards mid or low priority issues. With this revelation and breakdown of past thinking I was able to start to draft out a research project ready to start as soon as possible.

This is where my next hurdle presented itself. I always knew that research required ethical approval though I didn’t know the process in the NHS. I was directed to our organisations Academy of Research & Improvement for further support, which is where I met Dr Colin Barnes. He explained the difference between service evaluation and research, what materials would be required and the hoops I would need to jump through. I decided the research pathway was appropriate, despite being warned it was more labour-intensive.

Consent and information sheets were created and reviewed by families and young people. The “entertaining” 37-page IRAS ethical documentation was reviewed, revised, checked, and reviewed again.. Finally, after a 1-hour meeting in January 2021 the West Scotland Research Ethics Committee approved data collection of “The Viability of a Proposed Psycho-educational Neuro-Diversity Approach in Children's Services: The PANDA (The Portsmouth Alliance’s Neuro-Diversity Approach)”. When reflecting on this time, I remember a lot of stress. But I also see how the process was incredibly useful, developing precision in my language and understanding of how the research will be conducted to be prepared for any unfortunate circumstances and have a contingency plan in place. It wasn’t just pointless bureaucratic paperwork as some may see, it was a reflective process to make sure the research lead knows what they are doing.

The methodology that was agreed included three meetings with participants.

  1. Referral and Screening

Firstly, once participants were referred onto the project by a neurodiversity trained educational professional, they were screened and booked in for a consent meeting at the school. Questions were answered, written consent gained and reading material was provided to the families to provide foundational knowledge of what neurodiversity is.

1. Profile Building & Holistic Care Planning

The second, and most important meeting was the profile building meeting. This meeting focuses on conversations between families and educators to build a profile of the child with their comparative strength and weaknesses in nine key areas of development. These conversations were supported by real life examples split according to age and ability level in the approach’s behavioural tables and requires both parties to question and not dismiss why they might see different behaviours in various environments. Teachers and parents then used these discussions to mark the child development on nine spectrums between low and high on the profiling sheet which provides an easy to read one page summary. Participants then cross referenced this profiling sheet with the resource pack, which include accessible psychoeducational material and strategies for home and school environments. Next step was to build a holistic care plan for the child, and educational resources for families and teachers to engage with.

2. Review

A review meeting was then booked 3 months later to discuss their experience and fill out evaluative questionnaires at the end of each meeting to track the wellbeing and symptom management of the child. Participants then chose if they wished to take part in focus groups, or individual interviews for the child.

Overall, this approach can be completed, and support implemented within one month, providing vital early support for the child. This is very different to the traditional pathway with waiting times of up to a year during which little support is provided to families.

So how did this process translate to the practical, front line work of doing the research? Well, a stark comparison was seen straight away between this project, and other research I have collected data for. Thanks to the co-produced nature of the project, families were able to engage with the subject matter and dropouts from the project were next to none. Due to teachers working with us on the project, word got out within the school network and referrals started coming in fast, too fast for me to handle on my own. Families wanted meetings quickly, and some had to be delayed until after the summer holidays. I heard from our project lead that other NHS Organisations started to hear about the project and were watching carefully. Pressure was building, but support from my team and the Research Academy made the journey manageable. They provided me with training on data management. Any technical, ethical, or possible amendments I had were posed to the Academy and answered quickly. The support, education and mentorship was there and incredibly appreciated. Data was collected efficiently and effectively. The project took just over a year: over 100 professionals in Portsmouth were trained on the approach and 51 families were able to take part in the Neurodiversity Approach.

What did the data tell us? We observed a significant increase in the wellbeing of the child from everyone’s perspective, but no significant increase in symptom management. However, when looking deeper into the data we noticed that the parent’s view and the teacher’s view of the child’s symptoms converged, suggesting that the approach helped both parties understand the child’s symptoms. I very much believe that this positive shift we saw in families was due to the co-produced nature of the project. Families in focus groups commented on the accessibility of the language, young people spoke about how behavioural examples in the material felt “so true” and teachers discussed how the approach removed all the “unnecessary fluff”. Each member from the steering group had an influence in the approach, and their work and experience was vital in engaging their own demographic in the project. Overall, the data was positive, and we could say that families in Portsmouth appreciated this first step in inclusivity.

This journey was not easy for me, but thanks to the paperwork, the people I met on the way and the connections made, it made the entire process more enjoyable. I have seen incredible growth in myself thanks to others being kind enough to take some time out of their day to pass on their knowledge and expertise. Growth evidenced by being accepted this year to complete a Doctorate in Clinical Psychology, after mentioning this journey I made. Growth I will take with me in my future career and hopefully pass onto a new generation of clinicians. Therefore, I Wholeheartedly encourage anyone in Solent NHS to conduct research, that if you think you have an idea that will transform the way your profession or teamwork, go for it. There is support out there.


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