‘No one was listening’ — an insight into the pandemic experiences of single mothers of autistic children with special needs 

January 2024

In this entry, we welcome guest author Amy Taylor, an experienced special educational needs teacher. Amy discusses her research interviewing single mothers of autistic children for her MSc in Psychology from Arden University.

During the COVID-19 pandemic, single parents of children with Special Educational Needs and Disabilities were particularly impacted by lockdown measures such as school closures, working from home, and isolation from the family and friends who help with parenting. My small-scale study on the experiences of single mothers of autistic children sought to learn more from these families and redress their underrepresentation in research.

The mothers’ experiences of the pandemic tell a story of needing to persevere unsupported during a period of great personal challenge. The main challenge single mothers reported was losing their support networks to the pandemic. Co-parenting arrangements, essential help from grandparents, schooling and respite provisions were all abruptly withdrawn. A report entitled “Forgotten, left-behind and overlooked” captured the chronic inequalities in education for special needs and disabled pupils, which were amplified under the “magnifying glass” of COVID-19. The recent human rights analysis from the PREPARED project had similar findings, where pre-existing health and education inequalities were exacerbated on a global scale by the pandemic.

Akin to these reports, my analysis of the data identified four themes which portrayed participants’ experiences.

Needing support

“We need support but COVID led to damage, disappointment, delay and cancellation of our services.”
Despite judgement, resistance, and services refusing to help, some mothers were able to maintain a positive outlook on their own parenting. One participant shared:

“…There was nothing wrong with my parenting at all. I was just asking for help. I was asking for respite, people to help me. No one was listening. Services are just not there.” (Hannah)

Fear and confusion

The mothers in this study responded to the climate of fear with a strong imperative towards protection. For Lily, this related to protecting herself and her son from the barrage of COVID-based information from news sources and general conversations which would cause Billy anxiety and fear:

“I didn’t want to give him too much information. I don’t want to talk about people dying… I just said there’s a big nasty bug around and it’s making people poorly and we have to make sure we wash our hands.” (Lily)

Thriving in the quietness

In contrast to the challenges faced by the mothers however, their autistic children experienced many positives during this period of one-to-one time at home with their mothers. The slowness and calm of lockdown life aligned with autistic preferences and allowed some children to develop and thrive.

One child’s chronic bed wetting ceased, however resumed sadly once he returned to school and the anxieties of normal life began anew. Another child made great developmental progress in his communication, developing eye contact and cuddling with his mother during their cosseted lockdown together. The shift to home schooling was transformative for Lily’s son, thanks to the calmness and consistency of Lily’s one-to-one support:

“He didn’t have the stresses that he has when he goes to school. I think it really did him well and when he did go back to school he was like a different boy.”

Coping and making supportive connections

The fourth theme pays tribute to the resilient spirit of these incredible mothers of autistic children. In parallel, each of the mothers reclaimed their identities as strong women through connecting with like-minded communities and the natural world. Forest foraging, beachside yoga and finding themselves in their tribe of fellow ‘dragon mums’ invigorated and refreshed the mothers, giving them the much-needed strength to persevere and overcome the challenges of raising their autistic child amidst a global pandemic. A sense of community had a powerful, transformative impact upon Carrie’s identity as a fierce, forthright and connected mother:

I was then linking in with these other mums … they have this same attitude… there is a difference with your child and you need to be quite proactive, quite forthright really, quite dragon mum really.” (Carrie)

Welcome to my life!

Carrie also reflected that lockdown life served as a levelling force between the neurotypical world and her life of isolation as a mother of a special needs child:

It was the relief that you weren’t having to, you know, that everybody else was out living a life, and you weren’t.” (Carrie)

Although this sentiment was not expressed by the other participants in this small-scale study, it is a salutary reminder of the marginalisation that single parents of children with special needs and disabilities experience every day.

My time illustrating the experiences of single mothers of children with special needs and disabilities during the pandemic underlines that marginalised groups must be taken into account when planning for future pandemics. It is a step towards amplifying their voices and captures both their challenges and their incredible resilience.

The PREPARED project is capturing the first-hand experiences of frontline workers and marginalised groups. Their experiences actively inform our recommendations for policymakers, research funders and research bodies to create a proactive pandemic response that protects the most vulnerable. To learn more about our research, visit our news page or sign up to our newsletter below.