As the wearying year of Covid-19 grinds on, the determination by the UK government last spring to protect the NHS from demanding patients has raised the death toll considerably. Data on those who have missed essential treatments and therapies is patchy but anecdote abounds. We are all now more familiar with how excess deaths are tallied, and a recent report by the King’s Fund sets this out clearly, contextualizing Covid deaths.
Attention has turned recently to the dearth of diagnosis that has been part of the global health crisis. It is impossible to identify a huge range of conditions over even the best broadband connection, from ear infections to cancers. In the USA, diagnosis of the six most common cancers dropped by 46% between March and August, the direct result of screenings dropping by 90%. It has been estimated that 25 million GP appointments and 19 million NHS dental appointments were missed in the UK between March and November, including a million breast cancer screenings.
Failure to diagnose cancers may result in quick deterioration in health and premature death. Failure to diagnose chronic conditions will result in missed opportunities for treatment and recovery. In the case of Autism Spectrum Disorder, however, the NHS was failing to diagnose and treat patients long before the advent of Covid-19. There is no reason for this to continue. The latest research into the genetic basis for autism offers new opportunities for risk analysis and simple screening, if adopted, would allow rapid identification of children “on the spectrum”.
Delays in diagnosis have always been followed by failure to provide necessary treatments and therapies. Before Covid, two-thirds of those with an autism diagnosis were not receiving adequate services or care in the UK. This is not a polemical point: it was the conclusion of the All Party Parliamentary Group on Autism, reflecting on the first decade since groundbreaking legislation was passed in the UK. This was a marked improvement on the situation before 2009, which was still more appalling.
Autism Spectrum Disorder (ASD), a neuro-developmental condition, affects up to 2% of children born today throughout the world and it presents a range of challenges to families. Besides the diagnostic criteria for ASD which include (A) “persistent deficits in social communication and social interaction across multiple contexts”; and (B) “restricted, repetitive patterns of behaviour, interests, or activities”, autistic people manifest a series of co-occurring conditions. These include Motor abnormalities (79%), gastrointestinal problems (up to 70%), epilepsy (up to 30%), intellectual disability (45%), and sleep disorders (50–80%). Being autistic is challenging, and caring for an autistic relative is draining.
Left Stranded , a report published in September by the UK’s National Autistic Society, highlighted several areas in which autistic families have suffered more than others during our plague year. This is not whining or special pleading. It simply and honestly addresses the fact that autistic individuals and families rely far more on the help of others, often on a daily basis. Autistic adults who live independently may rely on the help of others to leave the house, to go shopping, to bathe and dress themselves. Those who live in residential care have that help, but face different problems. We are all now awfully familiar with the crises residential care homes have faced in 2020. The lives of autistic individuals are given focus and meaning by routine and core relationships. The removal of these structures leads to distress and anxiety. Although autism is not a mental health condition, 85% of those who responded to the Left Stranded survey reported heightened anxiety or depression.
When services are curtailed and when physical proximity is forbidden then essential therapies cannot be accessed. Many autistic individuals have low muscle tone, hypersenstivity or hyposensivity, meaning they are more or less sensitive to physical stimuli. The may feel lost in space, unable to orient themselves or move. Or they may need to move, to spin, to stimulate themselves. Occupational therapy and physiotherapy are essential to may with autism, and they rely on physical proximity and manipulation, close person-to-person contact. Physical therapies cannot be delivered by ‘telehealth’.
Speech and language therapy is also essential to many autistic individuals, but services offered by speech and language pathologists have similarly been curtailed. While many of us find it difficult to understand muffled or inaudible speech through face masks and shields, those with speech and language processing difficulties have always found it next to impossible to understand and interact with others, still less when they are wearing masks.
Left Stranded was delivered to the UK finance minister, Chancellor of the Exchequer Rishi Sunak. It appears to have been lost in his junk folder. As Caroline Stevens, Chief Executive of the National Autistic Society said of Sunak’s November 25th ‘Spending Review’, the UK Government ‘again missed the opportunity to commit the essential funding’ needed by autistic families.
“It’s not yet clear how what has been announced today will be spent, but the Government must invest in the support and understanding autistic people desperately need. Autistic children, adults and their families have been waiting years for funding for the diagnosis, education and social care services they need. This has never been clearer than during the coronavirus crisis. With the Government set to publish a new all-age autism strategy in the coming months, it’s vital the funding for these services is in place so autistic people and their families aren’t left stranded again.”