In recent years, numerous young autistic individuals have tragically lost their lives due to significant inequalities in their care, despite recurring alarms raised by coroners. Investigations reveal problems highlighted a decade ago remain unaddressed. Two grieving mothers spoke of the failure of the local health authorities to learn from the fatal incidents involving their teenage sons.
The government has pledged £4.2m towards enhancing services. Sir Robert Buckland, a former justice secretary, found the discoveries highly concerning and urged a swift government investigation.
In an unprecedented study, the BBC analysed over 4,000 Prevention of Future Death (PFD) notices distributed in England and Wales in the past decade. Legally, these notices are issued when Coroners determine a threat of further deaths unless authoritative measures are taken. However, there is no lawful obligation for authorities to act based on these warnings.
The BBC investigation identified 51 cases where PFDs indicate grave flaws in autistic care, prompting health and social care bodies to take preventative actions against potential fatalities. Most of the deceased were under 30 years of age, with nearly a third being children.
The average lifespan of an autistic individual is typically 16 years shorter than the general population, without a clear explanation – autism, a neurological condition that affects learning, behaviour, and social interaction, is not a direct cause of death.
Amongst these inquests, death causes varied, but approximately half related to mental health issues or suicide.
Five primary concerns emerged from these inquests: insufficient staff training in autism understanding, failure in treating autism and mental health separately, a scarcity of specialized accommodation, a lack of a healthcare professional coordinating the young individual’s care, and delayed autism diagnosis.
Autistica, an autism charity, believes this data reveals the preventable circumstances contributing to the early deaths of many autistic individuals. Sir Robert, head of the all-party parliamentary group on autism, expressed escalating worry over these results, stating a “systemic problem.”
Two mothers, whose autistic teenage sons passed away, revealed their struggles with the lack of accountability. Their sons’ deaths, which both resulted in PFDs, were linked to the same failing local health care services. The boys attended the same school, were treated at the same hospital, and died two years apart.
To these mothers, the knowledge that the deaths could have been preventable is tormenting. Further distress stems from failures in the medical and bureaucratic system with the families begging local health authorities for additional support, only to remain stranded as their pleas went unanswered.
Future Death Prevention notices criticised local health and social care services for ineffective support, noting that these tragic incidents may continue if children with complex neurodevelopmental needs are denied access to necessary care.
Coroners maintain that all autistic children should have a dedicated social worker. They believe had medical professionals overseen the care of these boys; they might have received the needed therapy.
These unfortunate tales are a glaring reflection of a severe national issue – lack of proactive measures despite repeated warning notices issued to 11 local health and social care authorities and 21 national authorities over a decade.
Charities like Inquest argue that the current system fails bereaved families and the public by neglecting life-saving recommendations. Their sentiment is echoed by figures like Sir Robert Buckland, who raises questions about accountability and highlights the grim outcomes that many autistic individuals face.
The Department of Health and Social Care is rolling out a national autism training programme. NHS Kent and Medway Chief Nursing Officer, Allison Cannon, on behalf of the NHS, apologised for the deaths and indicated a series of changes to enhance community support and improve services for such patients.
