A recently recognised phenomenon the NHS is ill-equipped to diagnose and manage
Khurram Sadiq is a Consultant Neurodevelopmental Psychiatrist. He leads the NHS attention deficit hyperactivity disorder (ADHD) services in South East London and specialises in both ADHD and autism. His recently published book, Explaining AuDHD, is a comprehensive guide to this relatively new diagnostic term: ‘It was not until … 2013 that both conditions [ADHD and autism] could be diagnosed simultaneously ... ’
The book is structured in a logical way, and starts with an introduction to the ‘basic’ concepts of autism and ADHD from separate lenses. This section reflects ‘the evolution of medical understanding, diagnostic frameworks and societal attitudes.’ Sadiq busts common myths; details diagnostic criteria; acknowledges understanding gained from, and limitations of, the existing literature; and discusses the history of both conditions. After having provided the reader with a firm grasp of ADHD and autism in their own rights, Sadiq starts to introduce the complexity of the combination of both conditions, presenting the ‘shared and distinct features of autism and ADHD’, which he suggests ‘originate from separate yet intertwined pathways’. Understanding of this is said to be imperative if we are to develop better diagnostic criteria and individualised support for people with both ADHD and autism. Sadiq uses patient case studies to provide real-world examples of how these seemingly contradictory conditions often co-exist.
The key message, laboured gently but not subtly throughout this book, is that there are many contradictory and alternating behaviours if one has a diagnosis of both ADHD and autism. There is an ongoing need to negotiate the opposing tendencies and navigate a world that requires both flexibility and consistency. People with AuDHD may wish to understand their autistic traits, their ADHD traits, and the issues brought about by the combination of the two. Each overlapping symptom alters the manifestation of another, creating an entirely new condition beyond ‘just ADHD’ or ‘just autism’. Sometimes the combination is ideal, for example, the risk-taking behaviour of ADHD is balanced by an autistic person’s cautious nature of staying within their comfort zone. The autism prevents the ADHD risk-taking from leading to potentially dangerous outcomes, and the cautious nature of autism can be challenged by encouraging the expression of spontaneity by the ADHD brain. Sadiq suggests that people with AuDHD are constantly balancing the need for stability with the desire for change. These opposing choices are not considered either/or: individuals with AuDHD need both of these things at different times and in different contexts. Learning to live on this see-saw clearly takes time, insight, and compassion.
This book includes a fair bit of repetition. Though some may find this unnecessary, or even irritating, it does seem an effective way to cement the author’s presented ideas. There is a spiral effect to Sadiq’s desire to educate the reader. Each time a concept is mentioned, the discussion builds on prior content within the book, thus can be understood in further depth and applied more readily to context. I wonder if this approach was designed specifically for an audience who may personally relate to the headlining condition(s); for example, people with traits of inattention may dip in and out of the book. The repetition means that key concepts are still encountered by those not engaging with the book from cover to cover.
Sadiq repeatedly reiterates how transformative a dual diagnosis of ADHD and austism can be. He reports that ‘many of my patients have expressed relief at finally understanding why they have struggled in certain areas of their lives, bursting into tears or becoming emotional.’ Though positive in its intent, a possible negative byproduct of labouring this particular patient experience is that it influences the expectations and experiences of others. For instance, if an individual does not automatically relate, such that they feel an overwhelming sense of relief, perhaps they will assume that they do not have AuDHD, and may mistakenly disengage. Common to the internet-based rhetoric surrounding ADHD medications, some people report feeling a miraculous enlightenment after just a single dose, leaving others to feel that they are in some way damaged beyond repair if it takes them a little longer than 1 day to navigate side effects and notice a demonstrable change in their symptoms, behaviours, and/or wellbeing. However, a commonly used phrase in the neurodivergent space, and featured within this book, suggests that, ‘if you’ve met one person with autism or ADHD, then you have met just one person with those conditions.’ This emphasises the unique way that such conditions present in each individual, and the challenges that come with society trying to put people in discrete diagnostic categories.
When PlayDoh is brand new, it fits nice and neatly in its pot. The pristine, smooth, cylindrical shape of the squishy stuff hugely appeals to the senses. However, when the children have made PlayDoh pizzas, and the turquoise has been sprinkled with glitter, rolled in dog hair, and marbled with random streaks of purple, it never seems to fit neatly back into its pot satisfactorily. This is a little like trying to apply simplistic labels to complex human beings. I’m not saying that some people are covered in glitter and dog hair, but not everyone fits neatly in a particular pot. Society dictates that we must all be something. We must identify with discrete ideology; we must wear finite labels. Overlap is deemed messy and ambiguity has negative connotations.
Sadiq peppers his own experience as an individual with AuDHD throughout the book, but this reflective, personal perspective is voiced loudest in the book’s concluding chapter. Given the clear expertise and first-hand experience he has of AuDHD, the degree of empathy he must have for his patients is likely significant. I cannot help feeling that this may dash the hopes of many when they seek to acquire an appointment for assessment with him, only to find that his private fees are substantial. He works within the NHS in South East London, but admits throughout the book that the NHS is a long way from being able to fully integrate the referral and care pathways of people with both ADHD and autism. Services are predominantly designed for either/or, not both. Further, Sadiq highlights that, ‘In the UK, formal training in neurodevelopmental conditions is not a standard part of medical training programmes.’ This leads him to make the point that healthcare professionals working in these fields are often neurodivergent themselves, their empathy rendering them highly motivated to support others facing comparable challenges.
Ultimately, Sadiq’s book is a well- written, compassionate explanation of AuDHD. However, I cannot help feeling deflated that the societal need for discrete labels clearly hinders patient experience. It governs the structure of the NHS, which is not equipped to meet the needs of people who fall between the cracks of black and white. One of my favourite authors, Glennon Doyle, writes in her book, Untamed: ‘It’s like water in a glass. Faith is water. Religion is a glass. Sexuality is water. Sexual identity is a glass. We created these glasses to try to contain uncontainable forces then we said to people: Pick a glass — straight or gay. So folks poured their wide, juicy selves into those narrow, arbitrary glasses because that was what was expected. Many lived lives of quiet desperation, slowly suffocating as they held their breath to fit inside.’ 1
