Treat the patient not the diagnosis

05th November 2021

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Why there will never be a one-size fits all ‘cure’ for autism or other DSM-5 Mental Disorder categories

Do current conventional methods of assessing neurodevelopmental and neurological disorders deliver the best outcomes possible?

Diagnoses for many neurodevelopmental and mental health issues result from noting clusters of signs and symptoms – things such as behaviours and/or feelings. Perhaps very surprisingly, these ‘diagnoses’ generally come without ever looking at a person’s brain (e.g. via a SPECT scan); equally often, they do not stem from a particularly scientific assessment of the functioning of the brain and its individual regions/connectomes. Working without these scientific tools, is this really the best that can be done? Can neuroscience offer more objective and accurate ways for assessing how a person’s brain is performing? Can what is being gleaned in neuroscience help us to pinpoint where in the brain neurological functioning is not optimal? Can this knowledge also enable treatments which lead to improvements in quality of life?

Unlike the current conventional goal of determining what ‘label’ (diagnosis) to assign to a person with a neurological condition, neuroplasticity therapies treat people on the basis of how well each of the brain regions, connectomes, pathways, etc are functioning. This approach relates to the phrase, “Treat the patient, not the diagnosis” (a quote regularly attributed to Prof. Ted Carrick), which means not to be led by whatever existing ‘diagnosis’ a person comes into a clinic with; but, instead, carry out assessments grounded in neuroscience, and use the findings from these to guide any treatment plan. This is a very different, and arguably better approach.

To help understand the debate around ‘diagnosis’ versus ‘individual patient’, it is helpful to recognise where ‘diagnostic labels’, such as autism, ADHD, dementia, etc come from. Typically, a medical professional, such as a psychiatrist or psychologist, will note any signs or symptoms (reported by the patient themselves or their family/carers, and/or noted by the medical professional). The medical professional will then remark upon those considered as outside the boundaries of normal, expected human behaviour. If a person is considered to have any ‘abnormal’ traits, then the professional will typically seek to further categorise these into ‘what type of abnormal is it?’, and they do this by giving a name to each collection of abnormal traits – this may be autism, ADHD, dyslexia, or any of the other multiple names for neurodevelopmental and neurological disorders.

To decide upon which named condition a person should be given, the medical professional will reach for a special book where the different clusters of signs and symptoms have been put into categories, with each collection being deemed as a ‘diagnosis’. This special book is affectionately known as “the DSM-5”. Its real name is The Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (it is currently on version 5 – the first version was published in 1952 by the American Psychological Association). It is essentially a catalogue of groupings of different symptoms. Each of these groups has a name, such as ADHD, OCD, autism, tics, etc. The DSM-5 also advises on what treatment is recommended for each diagnosis. However, it is very much worth noting that in the last 40+ years, there have been no statistically great increases in the rate of resolving these ‘disorders’; and, as psychiatrist, Dr Daniel Amen, in his book “The End of Mental Illness” writes, “Though the incidence of conditions like depression, anxiety, bipolar disorders, addictions, PTSD, and ADHD is skyrocketing, standard treatment and success rates in treating these conditions have barely changed in the last seven decades.”.

Another notable point is that although a person may be labelled with a condition such as ADHD, if you compare that person with other people who also have a diagnosis of ADHD, you would tend to find that, although there may be some similarities (shared signs and symptoms), they each seem quite unique. So, how can this be?

One explanation for this is that the DSM-5 uses a list of possible symptom clusters for each condition and, typically, the DSM-5 says that a certain number of these symptoms must be present in order for a particular diagnosis to be given. For example, it may list 20 symptoms, but a patient may only need to have 75% (15) of these to gain a diagnosis. It then stands to reason that in a room full of people all labelled with ‘ADHD’ that each one would seem similar but also unique.

And, although this may be logical and true, we might question whether diagnosing people on the basis of a cluster of signs and symptoms offers anything really meaningful in terms of explaining (e.g physiologically) what is causing the diagnosis? And is it helpful in specifying any treatment that will work for all people with the same diagnosis? I would suggest that the answer to both of these questions is ‘no’.

Another dilemma facing the psychologists, psychiatrists and other professionals who make these diagnoses, is what to do when there are presenting signs and symptoms which fall outside of the diagnostic category? What normally happens is that the person will then get another diagnosis. When someone has more than one diagnosis it is called “comorbidity” which means “the simultaneous presence of two or more diseases or medical conditions in a patient.” It is noteworthy that at least of half of all patients with a mental disorder have a secondary diagnosis of another mental disorder.

Whether a person has one diagnosis or more, use of the current DSM5 model still does not explain what is going on in the brain to cause each of the diagnoses.

On 29 April 2013, Thomas R. Insel, MD the then Director of the USA National Institute of Mental Health wrote a blog post about the DSM-5 saying,

“The goal of this new manual, as with all previous editions, is to provide a common language for describing psychopathology. While DSM has been described as a “Bible” for the field, it is, at best, a dictionary, creating a set of labels and defining each. The strength of each of the editions of DSM has been “reliability” – each edition has ensured that clinicians use the same terms in the same ways. The weakness is its lack of validity … Patients with mental disorders deserve better.”

Insel is suggesting a more valid approach. And this is arguably likely to come from a much more objective, scientific approach.

Science aims to get to the root cause of phenomena, and hence works to explain mechanisms in a cause and effect way. Another hugely important question is raised by Dr Amen, who wonders, why psychiatrists (and psychologists) are the only doctors who do not look at the organ they are treating? He writes,

“If you have crushing chest pain, your doctor will scan your heart; but if you have crushing depression, no one will ever look at your brain.

If you are sick to your stomach, your doctor will image your abdomen; but if you are sick with anxiety, no-one will ever look at your brain….

If you are paralyzed from an accident, your doctor will scan your spine; but if you are paralyzed with obsessive thoughts, no one will ever look at your brain.

If you develop a runaway tachycardia, your doctor will scan your heart; but if your teenager runs away and lives on the street, no one will ever look at his or her brain.”

Put like this, it throws into question the accuracy of the diagnoses which psychiatrists and psychologists arrive at; and it also again leads us to question how meaningful any treatment approach is when you are not even certain of the aetiology (cause of a condition) of the organ which you are treating (the brain, in this case).

Dr Amen is amongst a growing group of psychiatrists who are now revolutionising the profession by using clinical tests and tools (including SPECT scans of brains) to inform their work – with much success.

A move towards a cause and effect model has been embraced by a range of professions in the field umbrella-ed as neuroplasticity therapies, who have discovered and are using various assessment methods to help reveal the functioning of the brain.

Tests (such as bloodwork) and tools (such as scans) are useful to a certain extent. However, because everyone’s brains are live-wired uniquely to them, even when two people’s brain scans look anatomically identical, interestingly, they are unlikely to be exactly the same two people in real life – because all of our brains are unique. Also noteworthy, is that although a brain may look absolutely beautiful in an MRI scan, this piece of clinical kit is not able to reveal whether areas of the brain are actually being used to optimal effect.

However, there is a different way to assess these areas: Perhaps surprisingly, to assess the functioning of an individual’s brain; this can be done via assessing the functioning of the body!Our brains are extremely efficient organs, and, thus, each tiny piece of them has a reason for being there. In some way, every single part of the brain (beit a neuron, connection, region, or connectome) is connected to the body. Our bodies provide the sensation, movement, behaviours, etc which reflect (or mirror) the functioning of the brain, and vice versa. There is a two-way communication – a perpetual, two-way, “brain-body contract” (a term coined by Prof. Andrew Huberman). Therefore, it stands to reason that by examining the functioning of the body, we can examine the functioning of the brain – more specifically, by examining the functioning of an individual’s body, we can examine the functioning of an individual’s unique brain.

Using the functioning of the body to determine the actual level of functioning of the brain adds a huge depth of meaning to any assessment; and is a huge leap away from the vague approach of giving a name to a condition based on groupings of signs and symptoms. Focussing on the individual, and their individual assessment results, as opposed to just pinning a named diagnosis on a person, brings us much closer to being able to explain what is actually going on in their brain (and sometimes body); and with neurological disorders, being able to describe issues (more accurately, ‘decompensations’) in the brain and nervous system seems a much more promising starting position.

When a trained professional has the detail of where there are issues, what they are and to what extent they are causing dysfunction and any difficulties, that’s when the professional can start to plan, via a logical approach, what might resolve any issues. Logic cannot easily be applied when you diagnose by a cluster of signs; and guesswork is maybe about the best that can be applied to addressing these.

The crucial point here is that, on an individual basis, the DSM-5 criteria tell us very little about what personal treatment plan would work for an individual. Professionals who work with neuroplasticity therapies work on an individualised basis.

The other vitally important point is that those professionals who work with neuroplasticity therapies speak a completely different language to those professionals using the DSM-5.

A key difference is that those professionals working with neuroplasticity therapies work to address root causes, often naming the part of the brain which they are aiming to aid. And, though a symptom such as anxiety might be presenting externally, because the brain is so complex, the root cause of that anxiety could be one of 1,000 or more possibilities – and, using the DSM-5 method, that’s a lot of ‘guesses’ as to what might resolve it!

Hence, when asked whether a certain protocol might ‘cure anxiety’ or ‘cure autism’ (or many other such DSM diagnostic categories), the answer always circles back to the ‘treat the patient, not the diagnosis’ premise; for the DSM diagnostic categories are, in many ways, quite meaningless when deciding the treatment plan to embark upon: everyone is an individual, and a full and proper neurological assessment will reveal that individuality, and will also direct any treatment plan.

Hence, as we said at the start, the phrase “Treat the patient, not the diagnosis” has come about. It means not worrying about whatever word, or words, have been ascribed to a patient to describe their condition. Overall, there is a reticence from many people working in Neuroplasticity Therapies to speak the language of the DSM-5. Sir William Osler, the Canadian physician and one of the four founding professors of Johns Hopkins Medical Training Hospital, USA, said, “The good physician treats the disease; the great physician treats the patient who has the disease.” Meaning, the great physician understands the patient and the context of that patient’s illness. For the professional working with Neuroplasticity Therapies, it means carry out your assessment and work on the basis of your findings. And, for parents, carers and individuals, the ideal should also be that they are treated as an individual, with individual neurological issues being sited, with a move away from DSM-5 diagnoses towards a demand for accurate and specific neurological assessments and treatment plans.