“It Has Shown Me How Much I Am Capable Of”: An Exploration of Autistic Burnout Experiences in Motherhood

Abstract

Background:

Research has highlighted a relationship between autistic motherhood and autistic burnout, although autistic mothers’ experiences of autistic burnout have not been explored in depth.

Method:

To address this research gap, we used a participatory approach and a qualitative methodology with the aim of understanding: (1) how autistic mothers experience autistic burnout in relation to their parenting role and (2) what support they need to prevent and recover from this. We recruited 13 autistic mothers via social media to participate in an online semi-structured interview. We analyzed these interviews using inductive reflexive thematic analysis.

Results:

We developed four main themes. Theme 1, “Depletion,” focuses on the contributory factors to autistic burnout. Theme 2, “You have to just get up and keep going,” demonstrates how autistic mothers continued to care for and maintain their relationships with their children while experiencing autistic burnout. Theme 3, “New realizations,” reveals how autistic burnout impacted autistic mothers’ self-understanding and self-awareness. Theme 4, “We need support too,” discusses the availability and accessibility of support for autistic mothers and their subsequent experiences of this. Findings highlight that autistic mothers’ difficulties associated with their autistic burnout are compounded by a lack of autism acceptance and understanding from others, although they felt that burnout did not impact their parenting capacity.

Conclusions:

We provide several recommendations to improve outcomes for autistic mothers, including a need for increased autistic-led training for professionals, and for the development of formal, autistic-led peer support services and community groups.

Community Brief

Why is this an important issue?

Autistic mothers experience a lot of pressures (e.g., social demands), which can be very stressful and might lead to autistic burnout (extreme exhaustion experienced by autistic people that can make it hard for them to think and act). So far, we know very little about the experience of burnout in autistic motherhood. Knowing more could help us put better support in place.

What was the purpose of this study?

We aimed to explore the experience of autistic burnout in motherhood.

What did the researchers do?

We interviewed 13 autistic mothers about their experiences of burnout. Our questions included things such as “how did you first realize you were experiencing autistic burnout?” We used an inductive, reflexive thematic analysis. This is a form of qualitative analysis where researchers look at what people have said and develop common themes (or patterns) across participants.

What were the results of the study?

We developed four main themes. In theme 1, “Depletion,” we focused on the things that led to autistic burnout, such as feeling responsible for too many things at home. In theme 2, “You have to just get up and keep going,” we explored how autistic mothers continue to care for their children during autistic burnout. In theme 3, “New realizations,” we looked at how autistic burnout impacted autistic mothers’ self-understanding and self-awareness. In theme 4, “We need support too,” we explored where mothers went for support, whether it was helpful, and what would make support better in the future.

What do these findings add to what was already known?

Our findings show how the demands of motherhood might lead to autistic burnout among autistic mothers. We found that some things involved in maternal burnout (e.g., having a lot of things to remember) are the same as in non-autistic mothers, but some aspects of autistic maternal burnout are different (e.g., our mothers reported feeling closer to their children as a result, not more distant).

What are potential weaknesses in the study?

We only interviewed a small number of people. While this is not an issue in qualitative research, it does mean that more research is needed to see whether our findings apply to a larger, more representative group. We did not explore the experiences of parents who do not identify as mothers, and there are likely some unique aspects to these different experiences worth investigating.

How will these findings help autistic adults now or in the future?

Our findings further the understanding of the unique features of autistic burnout and contribute toward a growing evidence base that emphasizes the need for well-resourced autistic community support networks. These networks provide insider understanding and emotional support but are often reliant upon exhausted community members. We suggest that better support would include both professional aid (from well-trained professionals with a solid knowledge of autistic burnout) and community knowledge to ensure more sustainable and effective support for autistic people.