My journey from GP to neurodevelopmental specialist

I became a neurodevelopmental specialist GP due to my own curiosity, and lack of knowledge and understanding about neurodiversity. I took up a role in a local Neurodevelopmental Disorders Assessment Service for Children and Young People. There, I developed a role as a Neurodevelopmental Specialist GP; independently diagnosing and treating patients with ADHD and working as part of a multi-disciplinary team in the diagnosis of autism.

Frustration with the constraints experienced by the service, and the children and their families in their attempts to access it, led to me contacting other GPs across the UK through social media. First by creating a WhatsApp group, followed by a Facebook group and then to the formation of the Special Interest Group at the RCGP. Alongside this, I have set up the British Association for Neurodiversity network for clinicians interested in neurodiversity (www.B4ND.org

What is neurodivergence, and why is it important?

Neurodiversity refers to the whole spectrum of human neurotypes within a population, both neurotypical and neurodivergent. Neurotypical refers to the main neurotype or dominant way of thinking, also known as “standard”, “average” or “typical”. Individuals who show developmental profiles or characteristics that deviate from “typical” are neurodivergent. 

The term ‘neurodivergence’ has evolved as an umbrella term to refer to the group of conditions that fall under the broader category of ‘neurodevelopmental disorders’ (NDDs). There is much debate around the use of the term ‘disorder’ here. The heritability of these conditions implies they are not merely the result of an ‘error’ in development, rather that neurodiversity can often offer competitive advantages to the individual and society. Terms such as “disorder” and “deficit” would be better reframed as a “differences” and “difficulties.”

Conditions that fall under the neurodivergent umbrella include: 

  • ADHD
  • Autism
  • Developmental language disorder
  • Developmental coordination disorder (dyspraxia)
  • Specific learning difficulties (dyslexia, dyscalculia)
  • Tic disorders 
  • Sensory processing disorders.

The importance of neurodiversity in general practice

Although increasingly 'diagnosed' in adulthood, neurodivergence occurs in people of all walks of life, all ages, and all ability levels. It is heritable and diverse in terms of human brain structure and function, both between individuals and within the neurodivergent population. This leads to variation in perception, processing and behaviours, and overlap between presentations.1

It is estimated that up to 20% of the population is neurodivergent.2 Unrecognised and unsupported neurodivergence can significantly disrupt functioning across personal, academic, and professional environments, adversely affecting quality of life. 

Challenges across multiple settings emphasise the importance of comprehensive and timely support and treatment strategies.3 Evidence shows that co-occurrence of neurodivergent conditions is the rule rather than the exception 4,5,6 and that neurodivergence forms part of a wider collection of inter-related health conditions. These include connective tissue disorders, dysautonomia (e.g. postural tachycardia syndrome), chronic pain, chronic fatigue and many gastrointestinal conditions.7,8,9

GPs are well-placed to recognise neurodiversity in patients for whom we struggle to categorise their difficulties: those for whom there are several associated mental health conditions such as depression and anxiety; and those who struggle with emotional dysregulation. 

If we start to see patients through a neurodiversity lens, we can consider what support the patient needs to thrive, rather than view their difficulties as problems to be solved or diagnoses to be reached.  

Why are diagnoses soaring?

Awareness has soared, but there is no evidence that prevalence has changed. The debate often focuses on whether diagnostic thresholds or standards have dropped, rather than addressing patient needs. This, combined with few specialist services, means that more people are likely to present to their GP.

As well as our patient population, there is more awareness of the numbers of GPs, trainees and medical students who identify as neurodivergent. The Facebook group Association of Neurodivergent Doctors has 1.8K members! Many on the group still post anonymously due to stigma. 

Recognition, identification and acceptance is just the start of the journey towards deeper understanding.

Working as GP with a special interest in neurodiversity

Here is the classic chicken and egg situation. The College acknowledges GPs wanting to develop specialist interests and incorporate them into a portfolio career. However, working in a specialism requires training and experience, with mentoring and feedback, which cannot be attained by education alone. Opportunities are highly location dependent. I started by approaching my local Neurodevelopmental Disorders Service.

GPs have a wide range of skills, including a holistic approach to patients, a vast knowledge of drugs and their interactions, and experience in clinical reasoning in an extremely time-efficient manner! We also utilise our generalist skills and support multi-disciplinary teams in routine systems examinations, interpretation of ECGs and blood results, and multi-system reviews. We are entrepreneurial and see systems that could be improved, pathways that could be rationalised, with a solution-focussed approach.

Aspiration versus reality

Frontline GPs are inundated and there really is no more room at the Inn! I see requests for shared care as yet another dump from secondary care (funded) to primary care (unfunded), and GPs are right to push back for more resources to adequately care for patients. ADHD assessments and medication form part of shared care, but we are aware that often the specialist aspect of shared care is inadequate, and patients wind up falling between the cracks. This is where development of a Special Interest Group comes in. Linking special interest GPs to GPs with expertise helps everyone to develop confidence and competence in recognising neurodivergence in their patients. From the GP who is trying to make sense of the patient’s presentation, to the expert GP specialist in a multi-disciplinary team, there is a place for everyone.

The RCGP neurodiversity special interest group

For more information, visit the RCGP neurodiversity special interest group which is made up of GPs with an interest in neurodiversity and join the neurodiversity community on the RCGP forum where you can connect with other GPs to share insights and have conversations. 


Sources

1  Astle, D.E., Holmes, J., Kievit, R. and Gathercole, S.E. (2022), Annual Research Review: The transdiagnostic revolution in neurodevelopmental disorders.

2  Doyle, N. (2020). Neurodiversity at work: a biopsychosocial model and the impact on working adults. British Medical Bulletin, 2020, accessed 26 January 2024.

3  Zelazo P. D. (2020). Executive function and psychopathology: A neurodevelopmental perspective. Annual Review of Clinical Psychology, 16(1), 431–454. 

4  Kaplan et al. (1998). DCD may not be a discrete disorder. Human Movement Science.

5  Cleton and Kirby 2018 Why Do We Find it so Hard to Calculate the Burden of Neurodevelopmental Disorders. Journal of Childhood and Developmental disorders

6  Lang J, Wylie G, Haig C, Gillberg C, Minnis H. Towards system redesign: An exploratory analysis of neurodivergent traits in a childhood population referred for autism assessment. PLoS One, 2024.

7  https://allbrainsbelong.org/clinician-resources/

8  Csecs JLL, Iodice V, Rae CL, Brooke A, Simmons R, Quadt L, Savage GK, Dowell NG, Prowse F, Themelis K, Mathias CJ, Critchley HD, Eccles JA. Joint Hypermobility Links Neurodivergence to Dysautonomia and Pain. Front Psychiatry, 2022.

9  Bethany Donaghy, David Moore & Jane Green (2023) Co-Occurring Physical Health Challenges in Neurodivergent Children and Young People: A Topical Review and Recommendation, Child Care in Practice.

About the writers

DHP

Dr Heidi Phillips

RCGP Clinical Advisor for Neurodiversity

Dr Heidi Phillips is the RCGP Clinical Advisor for Neurodiversity and Associate Professor for Primary Care at Swansea University Medical School. She is founder and Chair of the British Association for Neurodiversity and is on the Clinical Advisory group to Wales Government for Neurodiversity. In 2019 she received the BMA Cymru Wales/ BMJ Teaching and Learning Innovation Award for her work on widening access, as well as being named Clinical Teacher of the Year for her work supporting medical students and doctors in training.