Forgotten families – The impact of a baby’s autism on the mental health of families and caregivers in the course of the pandemic.

At the top of Autism Awareness Week, Nicky Thomas, a PhD candidate researching the well-being of fogeys and carers of families caring for youngsters with mental disabilities on the University of Warwick (Warwick Medical School), is writing this blog to lift awareness of the challenges facing the families we look after, where a baby is autistic.

Autistic persons are experiencing higher levels of mental distress, anxiety and chronic loneliness in the course of the coronavirus pandemic in comparison with the overall population ^(1.2). Families play a very important role in promoting and supporting autistic people to develop and feel included in society. Nevertheless, often the care and support available has been severely limited consequently of the pandemic, and relations are spending more time with their autistic child in confined spaces than usual. Recent reports have revealed the massive impact of the pandemic on the mental health of disabled children and their families, including lack of support, isolation and family burnout ⁽³⁾.

Parents and caregivers of autistic children already face every day challenges and greater mental health problems in comparison with other groups of fogeys ⁽⁴⁾. Worryingly, additional lockdown restrictions have only increased the challenges of caring for this vulnerable population, including:

• Disruption of routine and living environment
• Social isolation from family and friends
• Homeschooling and dealing from home
• Limited access to social care and specialist support/treatment
• Limited access to essential food/supplies
• No respite
• Additional break day work for the needs of the kid
• Lack of income or job
• illness/physical distance
• Difficult navigation behavior
• Limited access to autism peer support groups

Along with these difficulties, older or vulnerable parents often care alone, raising further concerns about childcare support in the event that they turn out to be in poor health themselves. The pandemic has left families with children battling increasingly behavioral problems.Families with children are battling increasingly behavioral problems. ^(1.5). Parental stress may also cause maladaptive behavior of their children ⁽⁶⁾ further emphasizing the importance of adequate support. As well as, parents and guardians are preparing for the difficulties their child may now encounter after leaving isolation. This can be a daunting task for individuals with autism, who’ve developed recent “isolation” routines and who could have benefited from the restrictions imposed, e.g. by living at a slower pace.

The UK Government has been called to act on current inequalities to prioritize autistic people and their families and protect them from future pandemic challenges (National Autistic Society, Autistica). The policy documents recommend that every one families and carers receive details about their rights to respite care and a proper carer assessment to evaluate their very own mental health needs ⁽⁷⁾. But what mental health support did parents and carers receive at a neighborhood level to make sure family wellbeing needs were met? Primary care is crucial to making sure that the needs of families and caregivers are identified, documented and assessed ⁽⁸⁾. As well as, general practice is designed to offer look after and promotion of commonly known mental health problems. That is due to this fact a very good opportunity to proceed to make use of the virtual platforms used in the course of the pandemic to be certain that families and caregivers receive timely and accessible care and to enhance the ways during which services are delivered. Now greater than ever, the impact of a baby’s autism on the mental health of families and caregivers should be identified by professionals and presented in modern ways in which alleviate, reasonably than increase, the challenges of care.

Bibliography

1. O’Sullivan, K., Clark, S., McGrane, A., Rock, N., Burke, L., Boyle, N., Joksimovic, N. et al. (2021). A qualitative study of kids and young people’s mental health in the course of the COVID-19 pandemic in Ireland. International Journal of Environmental Research and Public Health, 18(3), 1062. MDPI AG. Downloaded from http://dx.doi.org/10.3390/ijerph18031062
2. National Autistic Society (2021, April 1) Left Stranded: The impact of coronavirus on autistic people and their families within the UK. Downloaded from https://www.autism.org.uk/what-we-do/news/coronavirus-report.
3. Associations for Disabled Children (2020) Left in lockdown – parents’ and carers’ experiences of isolation. Downloaded from https://disabledchildrenspartnership.org.uk/wp-content/uploads/2020/06/LeftInLockdown-Parent-carers%E2%80%99-experiences-of-lockdown-June-2020.pdf.
4. Bonis S. (2016). Stress and fogeys of autistic children: a review of the literature. Problems of psychiatric nursing, 37(3), 153–163. https://doi.org/10.3109/01612840.2015.1116030.
5. Colizzi, M., Sironi, E., Antonini, F., Ciceri, M. L., Bovo, C., and Zoccante, L. (2020). Psychosocial and behavioral impact of Covid-19 virus on autism spectrum disorders: a web-based parent survey. Brain science, 10(6), 341. https://doi.org/10.3390/brainsci10060341
6. Greenberg, J. S., Seltzer, M. M., Hong, J., & Orsmond, G. I. (2006). Bidirectional effects of expressed emotions and problem behaviors and behavioral symptoms in adolescents and adults with autism. American Journal of Mental Retardation: AJMR, 111(4), 229–249. https://doi.org/10.1352/0895-8017(2006)111[229:BEOEEA]2.0.CO;2
7. Nice (2021, April 1) Autism spectrum disorder in people under 19: support and management. Downloaded from https://www.nice.org.uk/guidance/CG170.
8. Buckley, C., Kendall, T., Taylor, C., & Baird, G. (2014). GPs can adapt their processes for caring for autistic children. Downloaded from https://www.guidelinesinpractice.co.uk/mental-health/gps-can-adapt-their-care-processes-for-children-with-autism/341183.article.

Further reading

https://www.birmingham.ac.uk/research/acer/research/covid-19-and-the-impact-on-families-with-autistic-children.aspx

https://www.scie.org.uk/care-providers/coronavirus-covid-19/learning-disabilities-autism/carers-family

https://www.autistica.org.uk/news/policy-after-lockdown

Spain, D., Mason, D., Capp, J, S., Stoppelbein, L., White, W, S and Happe, F. (2021) ‘This might be a very good opportunity to make the world a more autism-friendly place ”: Professionals’ perspective on the impact of COVID-19 on autistic people. Research on autism spectrum disorders. (83)

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