The important words here are ‘intellectual’ and ‘development’. Many ordinary people are aware of a concept of delayed or arrested cognitive development that is referred to as learning disability. This article will abbreviate ‘disorders of intellectual development‘ to DOID. this post is not about acquired intellectual disability but some of the issues may apply.
There is a tendency in an increasingly ‘woke’ environment of media and social media, to refer to these things as ‘issues’ rather than ‘problems’. I call it what it is i.e. problems – because they are ‘issues’ that frustrate people who experience them, as well as their relatives and carers.
It is important to note that the term “learning disability” is often used interchangeably with “intellectual disability” or “developmental disability” in some regions or contexts. In ICD-11, the focus is on “disorders of intellectual development” as the overarching category that encompasses various degrees of learning disabilities. Therefore, Learning disability (LD) will be used interchangeably with DOID. Whilst the majority of the developmental disorders arise at birth or early childhood and affect the brain, that does not mean they pure brain disorders i.e. physical disorders (or problems). Almost no one with a brain disorder of any type, will be able to pinpoint their disabling experience to ‘a particular’ part of their brain. They will experience such disability in the realm of ‘the mind’ or ‘the mental’. [For the avoidance of adverse arbitrary inference, ‘mental’ is not used pejoratively.]
The term ‘learning disability’ is defined by the Department of Health and Social Care (DHSC) (2001) as: “a significantly reduced ability to understand new or complex information, to learn new skills (impaired intelligence), with a reduced ability to cope independently (impaired social functioning), which started before adulthood.”
Mental retardation – is a defunct term that was inherited form ICD-9 and ICD-10. It was a predominantly based on IQ ranges. There is nothing wrong with IQ ranges; it simply does not give the full picture of functional impairments of mind.
Mind(UK) is often quoted as authority when it declared that learning disability is not a mental health problem. This article will demolish Mind(UK) and in doing so will necessarily explore related concepts.
Disorder(s) and problems
The WHO factsheet (June 2022) states,
A mental disorder is characterized by a clinically significant disturbance in an individual’s cognition, emotional regulation, or behaviour. It is usually associated with distress or impairment in important areas of functioning. There are many different types of mental disorders. Mental disorders may also be referred to as mental health conditions. The latter is a broader term covering mental disorders, psychosocial disabilities and (other) mental states associated with significant distress, impairment in functioning, or risk of self-harm.
In 2019, 1 in every 8 people, or 970 million people around the world were living with a mental disorder, with anxiety and depressive disorders the most common (1). In 2020, the number of people living with anxiety and depressive disorders rose significantly because of the COVID-19 pandemic. Initial estimates show a 26% and 28% increase respectively for anxiety and major depressive disorders in just one year (2). While effective prevention and treatment options exist, most people with mental disorders do not have access to effective care. Many people also experience stigma, discrimination and violations of human rights.
The whole factsheet is essential reading. It would be new territory where ‘disorders’ and cognate words, were to be considered NOT as ‘problems’ or causing ‘problems’ for affected individuals and services intended to help those people.
Both ICD-9 and ICD-10 have referred to this type of intellectual deficit under the clinical classification of Mental Retardation. ICD-11 classifies the concept under Neurodevelopmental problems as Disorders of intellectual development 6A00.
Neurodevelopmental means something which happens from birth or early childhood. The organ that is arrested or delayed in development is the brain. As a result functions of the mind are affected.
The full scale of DOID (or LD) is not well known because developmental intellectual deficits are not ‘pure’. Many people with DOID may also suffer with:
- Autistic spectrum disorders.
- Confounding clinical conditions such as OCD, quasi-psychotic states of mind, depressive illnesses.
- Disturbed personality traits.
The above would be difficult to assess and parse in a significant proportion of cases due to communication difficulties, uncooperativeness, in ability to tolerate assessment, and lack of reliable instruments for assessments. It is therefore difficult in many cases to know how if they co-exist, to what extent they may contribute to apparent intellectual disability.
Neurocognitive disorders (ICD-11) are acquired well beyond the developmental period. It includes dementias of various types. Notably patients with neurodevelopmental disorders can develop neurocognitive disorders. In Down’s syndrome for example, people start off with some degree of intellectual deficits in the developmental period and quite a proportion develop dementia later in life. According to the Alzheimer’s Association 30% who are in their 50s, 50% in their 60s, 70% their 70s, 80% of people with Down syndrome in their 80s have Alzheimer’s dementia.
ICD-11 states these disorders are “characterised by primary clinical deficits in cognitive functioning that are acquired rather than developmental. That is, neurocognitive disorders do not include disorders characterised by deficits in cognitive function that are present from birth or that typically arise during the developmental period, which are classified in the grouping neurodevelopmental disorders. Rather, neurocognitive disorders represent a decline from a previously attained level of functioning. Although cognitive deficits are present in many mental disorders (e.g., schizophrenia, bipolar disorders), only disorders whose core features are cognitive are included in the neurocognitive Disorders grouping. In cases where the underlying pathology and etiology for neurocognitive disorders can be determined, the identified etiology should be classified separately.”
Qualitatively people with DOIDs will experience almost the same range of impairments as those with Neurocognitive Disorders.
What is mind and mental life?
The concept of ‘mind’ is complex and multifaceted, with different disciplines offering varying perspectives. The mind refers to the collection of mental processes, functions, and states that together constitute our subjective experience and cognitive abilities. It is an abstract, multifaceted concept that encompasses consciousness, cognition, emotions, self-awareness, volition, language, social cognition, mental health, and unconscious processes, among others. The mind is generally associated with higher-order cognitive functions, such as reasoning, problem-solving, decision-making, and self-reflection. The concept of the mind is not limited to humans; it can also be used to describe the cognitive abilities and mental states of animals and, potentially, artificial intelligence.
The mind is not directly observable but it can be studied through various scientific methods, including neuroscience, psychology, and computational modelling. While it is difficult to provide a comprehensive account of all the key concepts, the following are important aspects that are often discussed in relation to the mind:
- Consciousness: This refers to the state of being aware of oneself, one’s thoughts, feelings, and experiences. It is the subjective experience of what it is like to have a mind.
- Cognition: This encompasses the mental processes involved in acquiring, storing, processing, and using information. Key cognitive functions include perception, attention, memory, learning, problem-solving, reasoning, and decision-making.
- Emotions: These are complex psychological states that involve feelings, physiological responses, and behavioural expressions. Emotions are central to the human experience and play a critical role in motivation, social interactions, and well-being.
- Self-awareness: This is the ability to reflect on one’s own thoughts, feelings, and experiences, as well as recognising oneself as a distinct entity separate from others. Self-awareness is a critical component of introspection, personal identity, and mental health.
- Volition: Also known as will or agency, volition refers to the capacity for making choices and initiating actions based on one’s desires, beliefs, and intentions.
- Language and communication: The capacity to use symbols, gestures, or sounds to convey thoughts, emotions, and experiences to oneself or others is a key aspect of the mind. Language allows for the sharing of knowledge, culture, and social connections.
- Social cognition: This involves the mental processes used to understand and navigate social situations, including the ability to infer others’ mental states, beliefs, and intentions (also known as theory of mind), as well as empathy and moral reasoning.
- Mental health: This refers to the overall psychological well-being of an individual, encompassing emotional, cognitive, and social functioning. Mental health is influenced by a variety of factors, including genetics, environment, and experiences.
- Unconscious processes: These are mental processes that occur outside of conscious awareness, often influencing behaviour, thoughts, and feelings without the individual realizing it. Unconscious processes can include habits, implicit biases, and emotional reactions.
My exploration now requires be to go into what ‘health’ means. Health is commonly defined or described using the following aspects:
- World Health Organisation definition: According to the World Health Organisation (WHO), health is “a state of complete physical, mental, and social well-being and not merely the absence of disease or infirmity.” This holistic definition acknowledges that health is not just about being free from illness but also includes overall well-being.
- Physical health: This aspect of health involves the proper functioning of the body’s systems and organs. It includes factors such as regular exercise, a balanced diet, adequate sleep, and maintaining a healthy weight.
- Mental health: This refers to the emotional, psychological, and cognitive aspects of a person’s well-being. Mental health involves the ability to cope with stress, express emotions, maintain positive relationships, and make sound decisions.
- Social health: This aspect of health is related to an individual’s ability to interact and maintain relationships with others, including friends, family, and colleagues. Social health involves effective communication, empathy, and a sense of belonging to a community.
- Spiritual health: This dimension of health relates to an individual’s sense of purpose, meaning, and connection to a higher power or belief system. Spiritual health can contribute to a sense of peace, well-being, and resilience.
- Environmental health: This aspect of health involves the relationship between an individual and their environment, both natural and built. It includes factors such as clean air, water, and soil, safe living and working conditions, and access to green spaces.
- Occupational health: This dimension focuses on the work environment and its impact on an individual’s physical and mental health. It includes factors such as ergonomics, safety measures, work-life balance, and job satisfaction.
By considering these various aspects, health can be described as a dynamic state of well-being that enables an individual to lead a fulfilling, productive, and meaningful life.
Comparison of DOID with acquired neurocognitive disorders
Disorders of intellectual development and acquired neurocognitive disorders share some commonalities in their impacts but also have significant differences.
Disorders of intellectual development, previously referred to as intellectual disability, are characterized by significant limitations in both intellectual functioning and adaptive behaviour, which manifest during the developmental period, typically before age 18. The impacts of these disorders often include:
- Difficulties with problem-solving, reasoning, and learning new skills.
- Challenges in adaptive behaviours, such as communication, social participation, and independent living.
- Potential difficulties with academic achievement and vocational activities.
- Possible increased vulnerability to mental health issues, such as anxiety or depression, and other health problems.
On the other hand, acquired neurocognitive disorders, such as those caused by traumatic brain injury, stroke, Alzheimer’s disease, or other types of dementia, typically occur later in life, often after an individual has reached full cognitive development. The impacts of these disorders can include:
- Gradual or sudden loss of cognitive functions, including memory, attention, language, and problem-solving skills.
- Changes in personality or behaviour.
- Difficulties with activities of daily living, such as managing finances, cooking, or personal hygiene.
- Possible emotional distress or mental health issues, such as depression or anxiety, related to the experience of cognitive decline.
While both types of disorders can affect cognitive functioning and daily living activities, there are key differences. Disorders of intellectual development are present from birth or early childhood and are typically stable across the lifespan, while acquired neurocognitive disorders involve a decline from a previous level of functioning, often occurring in middle or old age. The interventions and support strategies for these two types of disorders also differ, reflecting their different aetiologies and impacts on the individual’s life.
Why Mind(UK) is wrong
Mind(UK) states that “A learning disability is not a mental health problem. But people with learning disabilities may also experience mental health problems. There are lots of different reasons for this.” – citing reasons of negative attitudes and abuse from others. Mind(UK) seems unable to consider a range of psychosocial problems affecting people with learning disabilities as health problems in the context of widely accepted definitions of ‘health’ (which include the WHO concept of ‘mental health’).
This captioned assertion from Mind(UK) is surprising to me because it contradicts itself i.e. it is not a mental health problem but they may experience mental health problems. This puts ‘learning disability’ at a level with diabetes, or arthritis – because those are not mental health problems but people with those problems ‘can experience mental health problems’. Mind(UK) therefore seems to treat ‘learning disability’ as separate to the bio-psychosocial functioning of the physical organ of autonomy.
- Under “What’s it like to have mental health problems?” Mink(UK) states (09:54 2023-05-13) “Experiencing a mental health problem is often upsetting, confusing and frightening – particularly at first. If you become unwell, you may feel that it is a sign of weakness, or that you are ‘losing your mind’.” The later can occur in a range of mental health conditions. However, Mind (UK) excludes DOID and Neurocognitive Disorders from their list at 10:22 2023-05-13. What a remarkable oversight? In case Mind(UK) is up for suing me – which I would relish – a time-stamped screenshot of their webpage is here.
- Whilst not everybody (meaning ‘not 100% of people’) with a learning disability has a mental health problem, a sizeable proportion of persons with learning disabilities will experience (or suffer) with intellectual deficits that result in serious impacts on their well-being (as contained in the WHO definition of ‘health’). The impact is often so serious that their state of mental health is affected, even if they are not diagnosed with a separate mental disorder that falls in the spectrum of depression or psychosis. The impact, impairment and restrictions on living life to the fullest are ‘problems’. Some people with milder forms of intellectual impairment may live satisfactory bio-psychosocial health, it cannot be ignored that many do not.
- People with significant learning disabilities may (and often do) suffer with confusion, stress, lack of enjoyment of life, sleep pattern problems, low motivation, disordered thought processes, problems with eating, wide emotional swings, behavioural disturbances, and relationship difficulties. People with LD (or DOID) often experience: loss of opportunity, diminished economic achievements, financial hardships, discrimination, and several forms of abuse. What experiences such suffering? The mind!
- People with every other mental health condition on Mind(UK)’s website will also suffer confusion, stress, lack of enjoyment of life, sleep pattern problems, low motivation, disordered thought processes, problems with eating, wide emotional swings, behavioural disturbances, and relationship difficulties and loss of opportunity, diminished economic achievements, financial hardships, discrimination, and several forms of abuse. Mind(UK) is therefore confused in parsing out learning disability as ‘not a mental health problem’.
The domain of mind is considered to encompass emotional, psychological, and cognitive aspects of a person’s well-being. The latter are important aspect of mental life – because it is necessarily not in the domain of ‘physical’. The mind – like it on or not – is the domain of what is known to be ‘the mental’ sphere of living. Re-read points 3 & 4 above.
Therefore – for the above reasons taken all together – it is wrong to say that learning disability is not a mental health problem.
Mental health problems (or issues if you prefer) live in a very abstract space. We’re talking about things that cannot be ‘poked’ i.e. put in a scanner, X-ray, not subject to blood tests.
The explorations of concepts above are abstract. Individuals or groups of individuals may ‘feel’ or believe whatever they like, as we have seen with MIND.
In ordinary life – mostly among ‘physical disorders’ – assessment (and cognate words such as examination), are well known to be valid pre-requisites for understanding what is to be treated or managed. In physical health care it is easier to gain the cooperation of individuals with various tests or investigations. However, because DOID is in the nebulous space of mind and mental health – and mind cannot be put in a scanner or blood tested – assessment requires much cooperation of individuals. The following are some of the difficulties:
- Heterogeneity of learning disabilities: Learning disabilities encompass a wide range of conditions that affect different cognitive domains and vary in severity. This diversity can make it difficult to identify specific impairments and develop appropriate assessment tools.
- Comorbid conditions: Individuals with learning disabilities may also have co-occurring conditions, such as attention-deficit/hyperactivity disorder (ADHD), anxiety, or depression. These comorbidities can complicate the assessment process and may mask or exacerbate learning difficulties.
- Cultural and linguistic factors: The assessment process must account for cultural and linguistic diversity. Standardized tests and assessment methods may not adequately capture the abilities of individuals from diverse backgrounds, potentially leading to misdiagnosis or underdiagnosis of learning disabilities.
- Reliability and validity of assessment tools: Some assessment tools may not be sensitive enough to detect subtle learning difficulties or may not accurately measure the specific deficits associated with certain learning disabilities.
- Discrepancy between ability and achievement: Identifying a learning disability often involves determining a discrepancy between a person’s intellectual ability and their academic achievement. However, this approach can be problematic, as some individuals with learning disabilities may have average or above-average intellectual abilities, making it harder to detect their learning difficulties.
- Late identification: Learning disabilities may not always be identified in early childhood, and some individuals might not receive a diagnosis until adulthood. This late identification can make it challenging to assess the full extent of the learning difficulties and their impact on a person’s life.
- Motivation and effort: The assessment process requires the individual being assessed to be engaged and put forth their best effort. Factors like anxiety, lack of motivation, or poor rapport with the assessor can affect the accuracy of the assessment results.
- Test-taking skills and test anxiety: Some individuals may struggle with test-taking skills or experience anxiety during assessments, which can negatively impact their performance and make it difficult to accurately assess their learning abilities.
Too many cooks
The idea is surrounding this is mostly spoken about behind closed doors because ‘nobody’ wants trouble, in speaking openly about it. I break the (unwritten) rules. My experience over the last 15 years is that ‘everybody’ is either an expert or has to be heard.
The management concept of “too many cooks” is derived from the popular saying “too many cooks spoil the broth.” It refers to the idea that having too many people involved in a task, project, or decision-making process can lead to confusion, inefficiency, and ultimately a less successful outcome. This concept emphasises the importance of clear roles and responsibilities, effective communication, and streamlined decision-making processes in a management context.
When there are too many people involved, it can result in:
- Lack of clarity and accountability: With multiple people working on a single task, it can be difficult to determine who is responsible for what, leading to confusion and potential mistakes.
- Inefficient decision-making: When numerous individuals are involved in making decisions, it can take longer to reach a consensus and make progress, leading to delays and a slow-moving project.
- Duplication of effort: Multiple people working on the same aspect of a project can lead to wasted resources and time, as they may inadvertently duplicate each other’s work.
- Conflicting opinions: Diverse perspectives can be valuable, but when there are too many voices, it can be challenging to reach a unified direction, resulting in disagreements and discord.
- Reduced morale and motivation: When employees feel that their input is not valued or that they lack a clear role in a project, they may become disengaged and demotivated.
Apparently – the modern method of team-working – often cited in public sectors services, is that everybody must be allowed their say and to have their views considered. A leader of a team would risk being called a bully and end up in big trouble for appearing to give only fleeting consideration to some idea or perspective; courting allegations of being dismissive, rude, arrogant or inconsiderate. What is arrogant and ignorant at the same time is when the ‘cooks’ are unaware of the limitations of their lack of knowledge, experience and skill. Wild theories can emerge that need to be listened too.
In giving effect to ‘full inclusion’, decision-making becomes inefficient. Nothing in this part implies that I think ‘everybody’ should give special weight to what ‘the doctor says’. I am focusing on pitfalls in team-working and management. It is well-recognised that in order to provide good care/management to people with DOID, that multidisciplinary work is a must. But that multidisciplinary work often extends to consultations with other persons and agencies, and that is where ‘too many cooks’ can come into the ‘equation’. This is not confined to serving people with DOID – it happens in many other services e.g. CAMHS, personality disorders, peri-natal psychiatry and psychiatry of older persons to name a few.
I have no problems with seeking evidence. In mental health circles I have seen the ‘no evidence’ clause lead to stagnation in management/treatment. An example would be if there is no psychological test evidence that a person is suffering from autistic spectrum disorder. That’s not uncommon in DOID, because quite a proportion of intellectually disabled patients are unable or incapable of being assessed with the standard tools.
The concept of ‘sufficient evidence’ to make a decision on balance of probability, seems new in health services. However, Tribunals (which are not medical) are often in a situation to consider some evidence even if conflicting – and if sufficient – make a balance of probabilities (51%) decision on diagnosis. Medical doctors are not prohibited from doing the same. How? This happens in A&E departments everyday. Doctors cannot wait on robust evidence in every case. They often have to make decisions on less than 51% probability, else someone could die.
In the ordinary practice of psychiatry, psychiatrists cannot simply wait on robust tests of depression before prescribing medication to assist. The issues come down to the collective knowledge, skill and experience of the psychiatrist being applied to far from complete or even sufficient evidence. [The pitfall here of course, is that if taken too far there can be over-diagnosis of depression or other conditions.]
However, the balance of probabilities – in situations where there is a lack of evidence or that meeting diagnostic criteria – is not a carte blanche. Decisions made on ‘balance of probabilities’ – including diagnosis need to demonstrate an underlying due diligence.
Prescribing in intellectual disability
The situation is worse among patients with an intellectual disability, from my experience – which at 2023 concurs with the following:
“In 2019-20 the percentage of patients with a learning disability who had been prescribed antipsychotics was significantly higher (15.2%) than in patients without a learning disability (0.9%). the percentage of patients with a learning disability who had who had been prescribed benzodiazepines was significantly higher (7.2%) than in patients without a learning disability (2.1%). the percentage of patients with a learning disability who been treated with antidepressants without an active diagnosis of depression was significantly higher (11.6%) than in patients without a learning disability (4.4%). the percentage of patients with a learning disability who been treated with epilepsy drugs without an active diagnosis of epilepsy was significantly higher (5.6%) than in patients without a learning disability (2.4%).” according to NHS Digital (2019-2020). See tabulated summary:
|Without learning disability
|Antidepressants (with no diagnosis of depression)
The figures are shocking, considering that the Government’s STOMP agenda has been in place from 2016, and ‘everybody’ is signed up to it.
However, NICE 2015 states that “Antipsychotics are the most frequently used drugs for people with a learning disability and behaviour that challenges, often in the absence of a diagnosis of a mental health problem. The use of antipsychotics should be limited and regular review should ensure that there is an appropriate rationale for prescribing. A full multidisciplinary review will also help to reduce prolonged use of antipsychotics and thereby potential side effects.” Some may have overlooked the words ‘in the absence of a diagnosis of a mental health problem‘. This must clearly mean there is a lot of unlicenced antipsychotics being prescribed. t this time, 2023-05-07 12:57PM, I am not aware that anyone has objectively assessed the scale of unlicenced prescribing among people with learning disabilities (aka disorders of intellectually development as per ICD-11).
NICE 2015 further requires that, “Evidence of local arrangements and written protocols to ensure that people with a learning disability and behaviour that challenges have a multidisciplinary review of their antipsychotic medication 12 weeks after starting treatment and then at least every 6 months.”
But further NG11 goes further to say:
1.8.1 Consider medication, or optimise existing medication (in line with the NICE guideline on medicines optimisation), for coexisting mental or physical health problems identified as a factor in the development and maintenance of behaviour that challenges shown by children, young people and adults with a learning disability (see also recommendation 1.10.1).
1.8.2 Consider antipsychotic medication to manage behaviour that challenges only if:
1.8.3 When choosing which antipsychotic medication to offer, take into account the person’s preference (or that of their family member or carer, if appropriate), side effects, response to previous antipsychotic medication and interactions with other medication.
1.8.4 Antipsychotic medication should initially be prescribed and monitored by a specialist (an adult or child psychiatrist or a neurodevelopmental paediatrician) who should:
1.8.5 Ensure that the following are documented:
1.8.6 If there is a positive response to antipsychotic medication:
1.8.7 When prescribing is transferred to primary or community care, or between services, the specialist should give clear guidance to the practitioner responsible for continued prescribing about:
The concepts of DOID or LD are abstract and often difficult to fathom even for trained mental health professionals.
People with neurocognitive disorders (acquired late in life) are considered to suffer with mental health problems e.g. dementias of various types.
The bio-psychosocial health impact of Disorders of Intellectual Development on people are at least equal to or worse that those suffering with Neurocognitive Disorders.
Importantly because DOIDs occur early in life the cumulative health and social suffering over a lifetime is far more serious when compared with Neurocognitive Disorders.
Misinformation can result from authoritative bodies not adhering to the rules of logic (which underly reasoning).
There are huge problems with assessment but they are no insurmountable.
Effective teamwork – that avoids the unspoken pitfalls of team work – is a challenge in itself.
- Mental health problems in people with learning disabilities: prevention, assessment and management – NICE Guideline 2016 (NG54)
- Learning disability: behaviour that challenges – NICE Guideline 2019 (QS101)
- Prescribing in learning disability.