A leading British psychiatrist and specialist in attention deficit hyperactivity disorder (ADHD) – who was diagnosed with the condition when he was 34 – believes that reducing diagnosis of the condition to child-centric criteria has done it a disservice.
Dr James Kustow has spent the past decade and a half unpicking the complex nature of ADHD, gleaning insights from his personal experience while studying and contributing to emerging research on the causes and associations of adult ADHD, many of which are misunderstood and rarely acknowledged.
The Telegraph reports that in a recently published book, How to Thrive with Adult ADHD, Kustow lays out a tested practical framework for not only managing the symptoms of adult ADHD, but excelling with a disorder many attribute to depleted levels of the brain chemicals dopamine and noradrenaline.
Included is a poem titled Systemic Toxicity, which Kustow says will resonate with those who, along with ADHD, also suffer from a catalogue of puzzling conditions including chronic pain, fatigue, irritable bowel syndrome (IBS), brain fog and dysautonomia.
He sums up what the medical community at large has yet to acknowledge: the undeniable yet complex connection between body and brain – supported by emerging studies showing a clear link to physical inflammation and neuro-developmental conditions like ADHD.
An integrative psychotherapist working in the NHS adult ADHD service alongside his private practice in London, Kustow is also a director of education for UKAAN, the main professional organisation for adult ADHD in Britain. He has co-authored numerous scientific papers on the condition.
On his own diagnosis at 34, he says: “I was a generally healthy kid who played loads of sport … but I often put my foot in it. However, I was reasonably bright, and quickly learnt I had to rein it in or mask some of these things. I could never concentrate, or focus when reading so I covered it up. But the truth is my ADHD wasn’t picked up.”
Awareness about the condition, particularly in adults, is growing. Some say ADHD is being over-diagnosed, which Kustow rejects, citing The National Institute for Health and Care which estimates, that 3%-4% of adults in the UK have ADHD – yet well under a fifth have actually been diagnosed. “It’s most definitely not over-diagnosed – we are in catch-up presently as more adults are realising that ADHD explains their difficulties,” he said.
ADHD needs a rebrand
“According to our current way of describing it, ADHD is a disorder characterised particularly by persistent and impairing features of inattention (including distractibility, disorganisation and forgetfulness), hyperactivity (of both body and mind) or impulsivity (of actions and words), or aspects of all three. Most of those affected also experience emotional dysregulation, or mood instability, in addition to the above,” Kustow writes in the book.
“Personally, I find it most helpful to think of ADHD simply as a disorder of regulation (or a ‘dysregulation disorder’). This aptly describes my personal experience, and that of the many patients I have worked with, where most difficulties experienced relate back to an issue with the ability to regulate…something.”
To understand how disordered regulation plays out in those with adult ADHD, Kustow has presented 10 key domains based on current and emerging research.
- Attention and executive functioning (procrastination, hyperfocus, forgetfulness, distraction);
- Activity (difficulty staying still, talking excessively, physical and mental exhaustion, apathy, social withdrawal, overexcitement, sexual issues);
- Impulse (problems delaying gratification, disordered eating, self-harming, careless driving, interpersonal conflicts, substance abuse or addictive tendencies, spending money impulsively);
- Emotion (anxiety, rapid mood shifts, quick to anger, excitability, difficulty relaxing, heightened sensitivity to rejection or criticism);
- Reward or pleasure seeking (risk taking, boredom, difficulty inhibiting drives, being in the moment);
- Sensory processing (sensory over-reactivity, sensory under-reactivity, sensation-seeking behaviours, frequent sense of overwhelm);
- Time appraisal (time blindness, time management issues);
- Sleep-wake rhythm (delayed bedtimes, sleep deficient, daytime tiredness, sleep disorders such as sleep apnoea and restless leg syndrome);
- Immune function (heightened sensitivity, increased pain or pain syndromes, fatigue syndrome, more susceptible to infections, allergies, a theme of mast cell activation abnormalities with more asthma, allergy and autoimmunity); and
- Arousal and energy expenditure (a “boom-bust” pattern of energy expenditure, physical and mental exhaustion, blood sugar problems, perfectionism, motivation issues).
Connection between ADHD, hypermobility and systemic inflammation
Of all the domains Kustow references, “immune function” is the most cutting edge and could be a clue, he says, to one of the drivers behind ADHD initially presenting in adulthood. “About 15 years ago, I started noticing that my patients with ADHD often had hypermobility or connective tissue-related issues as well. I didn’t understand it and not many people were talking about it back then.
“Over a month-long period, I read everything on the topic and began to map it out. Suddenly I saw this network of problems around hypermobility that they were complaining about.”
These include dysautonomia (malfunction of the autonomic nervous system causing dizziness and heart palpitations upon standing), as well as immune over-reactivity, gastrointestinal problems and seemingly high rates of mental illness including anxiety, depression and ADHD.
Then came a study in 2022 by Dr Jessica Eccles, a British psychiatrist and researcher, finding that about 50% of adults with ADHD are hypermobile.
This was a light-bulb moment not only for Kustow, but for the wider psychiatric community.
Hypermobility (caused by faults in certain genes that make connective tissue weaker) is also on a spectrum and can range from lax joints without any associated issues, to more severe cases of Ehlers-Danlos syndrome (EDS) when loose, unstable joints can dislocate more easily and lead to joint pain, fatigue and other problems.
“A large cluster of people with hypermobility have wider health problems linked to the immune and autonomic nervous system,” he says.
Outwardly, being extremely bendy could be deemed a bonus – those with hypermobility are more flexible and good at gymnastics, for example. But there can be something more sinister going on.
“When people are not moving as they should, their immune system recognises this as a threat and acts as if that body is in danger,” he explains. “Intuitively, the body knows the person shouldn’t be moving their joints past a certain point because it causes tissue damage, therefore those who are hypermobile could be experiencing low level, chronic immune activation that has a strong neuropsychiatric signature.”
Too much histamine?
Kustow calls this “the somatic super syndrome”, and has developed a model to visualise the link between hypermobility disorders (EDS or HSD), autonomic nervous system dysfunction and mast cell activation syndrome (MCAS) and neuropsychiatric conditions like ADHD.
A 2015 study published in the Journal of Allergy and Clinical Immunology found that 65% of people with hypermobility disorder also had MCAS. Kustow believes this key piece of the puzzle deserves further study.
Mast cells are white blood cells that play an important ‘first responder’ role in the immune system. These cells store histamine, which is released when the body is exposed to toxins, allergens or infections. In some people (often those with a hypermobility disorder), this normal immune reaction can become dysregulated, resulting in the mast cells getting stuck in a chronic and excessive release of histamine, manifesting in allergic reactions such as itching, rashes, hives, pain, fatigue.
One way to ease the symptoms of excess histamine is to take an antihistamine daily, something Kustow does himself, while observing a moderately low-histamine diet that limits foods like aged meats, cheese and fermented foods that are high in histamine.
“It’s not as simple as taking an antihistamine but it’s an easy, inexpensive thing to try to see if there’s any improvements.”
The theory builds on the premise that if your whole system is bathed in inflammatory chemicals, even in small doses, for years and years, these will affect not only the body (causing joint pain, fatigue, dizziness, irritable bowel syndrome), but also brain function.
“Neuro-inflammation occurs when inflammatory chemicals gain entry into the brain,” says Kustow. “When the brain is inflamed, or there isn’t enough blood flow, you essentially get brain failure. What does brain failure look like? Anxiety, mood disorders and ADHD.”
Mast cell activation syndrome is difficult to test for accurately and is often provisionally diagnosed on clinical grounds, whereas hypermobility is determined usually by a rheumatologist using the Beighton scoring system which tests joint flexibility in nine key places.
With patients experiencing a number of inflammatory symptoms from pain to fatigue and allergies, a good doctor will often be able to connect the dots and treat the body systemically, possibly alleviating the need to visit several medical specialists.
Medication only works so far
Kustow is not against medication. Stimulants, he says, are among the most effective mental health medications around, and shouldn’t be overlooked as numerous studies show the negative outcomes of ADHD (74% of those with ADHD are more likely to be involved in traffic accidents, for example) are reduced dramatically with medication.
“So long as blood pressure is monitored regularly, and controlled, ADHD medication is, for the most part, a net benefit.”
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