Submission from ARCH regarding the Impact of Covid 19 on Children and Young People with ASN
Education, Children and Young People’s Committee for Autism Resources Coordination Hub (ARCH) South Lanarkshire
On
“The Impact of the Pandemic Lockdown experience on South Lanarkshire’s Neurodivergent children and young people”
“Tell me and I’ll forget, teach me and I’ll remember; Involve me and I’ll learn” (Benjamin Franklin)
“Children have a right to receive and impart information, to express an opinion and to have that opinion taken into account in any matters affecting them from the early years onwards. Their views should be given due weight according to their age, maturity and capacity” (Articles 12 and 13 UNCRC)
Introduction:
This submission represents the distillation of hundreds of views communicated over the past 22 months of Lockdown during weekly online support sessions held within South Lanarkshire for our Autism community. By using the ZOOM platform ARCH has continued to sustain cohesion within what has been collectively experienced as an isolating and anxiety-inducing lockdown experience.
What needs established from the outset are the ‘atypical’ ways in which the pandemic disproportionately impacted on autistic children and young people who were already struggling to ‘fit in’ to a neurotypical education system.
This was articulated in the findings outlined in the Morgan review, and the 2018 ‘Not Included, Not Engaged, Not involved’ report which respectively highlighted the structural and systemic challenges faced by autistic/ ASN C&YP in ensuring their GIRFEC wellbeing indicators were being met within mainstream education.
The sudden and unanticipated imposition of lockdown in March 2020 was clearly experienced by all as an immediate transition into what was called “The New Normal”.
This required considerable flexibility and resilience from autistic C&YP and their families as well as education staff in striving to manage the demands of sustaining a semblance of educational normality in an otherwise abnormal and anxiety-inducing experience.
By definition ‘transitions’ of any kind present disproportionate stresses on autistic children and young people, so the ‘new normal’ became an overwhelming experience for many, as well as their parent carers striving to support them. Indeed, we know that when autistic C&YP are in a state of sensory overwhelm their capacity to think flexibly becomes narrower more rigid and/or restricted inducing fear, panic, and resulting in an array of distressed behaviours.
Prevalence figures:
The additional support needs of autistic C&YP are no longer restricted to a small minority in Scotland’s mainstream and ASN schools. A tranche of reviews undertaken in 2020-2021 by amongst others; Exeter University, Dr Amanda Kirby and the Cambridge Autism Research Centre have all aligned with the North American Centre for Disease Control (CDC) 2019 figures showing that autism and ND prevalence figures have increased significantly in the 20 years between 1998- 2018. These studies have shown that diagnostic figures in England and Wales rose from 3000 per year in 1998 to 65,000 per year in 2018.
The Cambridge Autism Research Centre revealed an upwardly revised prevalence figure of 1 in 57 in a study of over 7 million C&YP, and Amanda Kirby’s review of care experienced children and young people revealed neurodivergent prevalence figures of 44% within the care experienced population in England and Wales. Indeed, the Morgan review highlighted that Autistic C&YP when taken together with ASN and other ND conditions like dyslexia and dyspraxia, total some 33% of Scotland’s school pupils.
When considered alongside published pre-lockdown figures for autistic C&YP having significantly greater levels of mental health problems, suicide rates, self-injurious behaviours and school-related problems, the post-lockdown effects might be reasonably predicted as profound.
Anxiety-Related Issues/Trauma:
The concept of ACE’s (Adverse Childhood Experiences) and trauma-informed practice is becoming increasingly prominent within the professional vernacular. However, the acronym also denotes another lockdown-related factor; ‘Adverse Cultural Environments’. The lockdown experience created such an adverse context for our autistic children and young people, who were bombarded by daily catastrophising media articles, usually accompanied with graphic visuals of mortality and infection levels and led to conversations within families and other networks about impending mass deaths. This was compounded for many autistic C&YP who suffered the real loss of loved ones during the pandemic, once again impacting on a population with impaired resilience factors both personally and socially and who processed everything in a literal manner.
Lockdown was also experienced by neurotypical children and young people as anxiety inducing, however the effects on autistic C&YP were amplified with many showing signs of developmental trauma. ARCH has seen a corresponding upsurge in related distressed ‘crises’ occurring, with parent carers often being left to deal alone and largely unsupported with these issues as services had been ‘paused’ or otherwise restricted.
The absence of structured support was also compounded due to sometimes significant differences of opinion relating to eligibility criteria between, on the one hand parent carers of autistic C&YP, and on the other staff responsible for operating the Education lockdown’ hubs’ designed to support ‘vulnerable’ C&YP.
The “quiet voices” of our autistic C&YP were too-often drowned out amongst the clamour of wider social, political, and public health priorities.
Unrealistic Expectations:
Many autism families experienced additional stress due to the requirement to complete schoolwork within family homes. This presented issues related to a clash of context, as many autistic C&YP struggled to undertake school-related tasks at home given their literal view that ‘school is school’ and ‘home is home’.
Education staff were tasked with trying to maintain some curricular activity via remote learning, which often created additional stresses for families simply trying to contain and manage their autistic C&YP’s anxiety levels and other distressed behaviours throughout lockdown.
Similarly, education staff are now, within the recovery phase being tasked with supporting many autistic C&YP experiencing anxiety related school absences or challenges due to emotional and behavioural consequences engendered by lockdown.
Autistic C&YP are equally experiencing significant transitional stresses in navigating their return to full time education, as the message of lockdown remains somewhat ‘fixed’ in ND minds which are less able to adapt as quickly or as easily as their neurotypical counterparts.
What could help during the recovery phase?
• Mandatory workforce training in autism awareness for all undergraduate and qualified teachers, social care, and health staff.
• Development of programmes for Scotland’s Neurotypical C&YP to promote greater understanding of Neurodiversity and Disability.
• Create systems to identify, monitor, build and maintain the emotional and mental wellbeing of autistic C&YP
• More presence of other disciplines within Scotland’s schools i.e. social care and health staff to deliver specific programmes.
• Dedicated relationship education programmes which have the potential to help autistic C&YP acquire the social and emotional learning skills they need to have good mental health and wellbeing.
• A requirement to produce accessible public information in a range of formats including visuals and easy read.
• Rights- based supports established via legislation and a commissioner’s office
• Corrective Emotional Experiences utilising relational-based work to create a welcoming, shared, safe and nurturing space for autistic C&YP.
• Build positive partnership relationships between autistic C&YP, parent carers and staff to ensure their voice is heard and views respected.
• Systems to ensure any action points are integrated, sustained, and monitored to ensure progress.
• Designated autism leads within every school to ensure more coordinated approaches and identify professional development needs.
• Recognition of the risk of increased social exclusion for autistic C&YP and proactively seek to implement strategies to counter this.
• Ensuring Education is incorporated into National Autism Strategies