The needs of people with intellectual disabilities and autism during the pandemic: Making the invisible visible

A case discussed at the launch of a new UK clinical ethics committee (CEC) related to a young person with intellectual disabilities who was unable to tolerate personal protective equipment (PPE). When care-givers approached him, ‘Tom’ became very agitated and attempted to pull off their masks. The case stimulated initial discussion regarding obligations to keep care-recipients and care-givers safe but soon broadened with consideration of the needs of people with intellectual disabilities and autism more generally. It was agreed that these needs have been given too little attention during the pandemic with lack of engagement with, for example, preparation of the health and social care workforce, issues relating to mental capacity, the reality of health inequality, the challenges of service commissioning and the need for family support.

It became clear from the CEC discussion that participants welcomed the opportunity to discuss a topic area that had previously been, for the most part, invisible during the pandemic. There were many questions regarding ‘Tom’s’ condition and family circumstances and suggestions as to creative responses to his inability to tolerate PPE.

We were impressed by the level of interest in ‘Tom’s’ experience and in the commitment and creativity expressed to make his experience – and the experiences of his care-givers – better. Tom’s case and the positive CEC responses also reminded us that autistic people and those with intellectual disabilities are not always viewed as active or engaged citizens and their needs need to be made more visible.

In a report from the UK National Audit Office in 2017, it was estimated that annual spend by Government to support adults with an intellectual disability at £8bn. ¹ Media present regular reminders that the system is not working. It is the case that people with an intellectual disability are likely to die on average 20 years younger than the rest of the population. ² We know this because England is the first country to have a national programme of work solely aimed to finding out why. ³ There is evidence that families have to challenge the system publicly to force systemic change, often following the death of a son or daughter, due to failures of the system. ⁴

The inequalities experienced by those labelled ‘different’ is not new. In relation to autism and intellectual disabilities documents date back as far as the 1400s with, for example, the Malleus Maleficarum ⁵ in which those whose behaviours were considered unusual or different from the norm were associated with sorcery and would be criminalised. In the United Kingdom, there has been significant progress in the last two decades, in particular, in the way in which policy now identifies the need for ‘reasonable adjustments’ ⁶ so that all people receive equitable care outcomes.

There remains, however, scope for further improvement to ensure that the voices of autistic people and those with learning disabilities (estimated at 2.1 million in the United Kingdom) – and their families – are heard and responded to. Although a significant minority, representing a little over 3% of the UK population, their needs often go unnoticed being overshadowed, misinterpreted or misunderstood by the majority of the workforce across the system. This happens to such a degree that the term ‘diagnostic overshadowing’ was coined to describe this behaviour, that is, the act of attributing a person’s needs to their diagnosis rather than making sure they are not a symptom of a comorbid condition. ⁷

For many people, intellectual disability and autism can also be described as a hidden disability due to the fact that there may not be an obvious physical manifestations. The outcome of this lack of visible evidence of the hidden disability may result in others not being able to recognise or acknowledge the challenges faced by these groups and, as a consequence, their needs are misunderstood and unrecognised. We very much hope that the Oliver McGowan Mandatory Learning Disability and Autism training for all health and social care staff trial across England, ⁸ that is currently underway, will be impactful. Oliver McGowan was a young autistic man with a known intolerance to anti-psychotic drugs. These were administered to him, despite his family's objections and he subsequently developed neuroleptic malignant syndrome and died days later. ⁹

There is much to do to better prepare the health and social care workforce to respond to the needs of autistic people and those with intellectual disabilities. If this is not achieved, across the whole workforce, health inequalities will remain unaddressed and there is little potential for individual flourishing. Discussions, such as at the CEC meeting, are to be encouraged to shine a light on the little understood needs of autistic people, those with intellectual disabilities and their families. The discussion led us to conclude that sharing and interrogating the experiences of ‘Tom’, his family and his care-givers enabled the group to enquire, to learn and to critically discuss the ethical and clinical issues. These issues need to be addressed and to be progressed with creativity and a commitment to social justice and non-discriminatory practice. CECs provide an excellent forum for discussion and can stimulate collaboration and solidarity to promote the rights and interests of those who, too often, remain invisible in our health and social care systems.