Understanding the Unique Challenges of Autistic Mothers

This post was written by Dr. Kiley Hanish.

As a later-in-life-diagnosed autistic woman, I started connecting the dots to make sense of my thoughts, behaviors, and life experiences. One area of my life where I gained particular clarity was my experience as a mother. Being a parent has been extremely difficult for me, as I feel constantly overwhelmed and chronically exhausted. I then read this article about the sensory experiences of autistic mothers, which highlighted that autistic mothers experience higher stress responses and more challenges adapting to their daily lives as parents.

The researchers believe this is likely due to the heightened sensory sensitivities of autistic people combined with increased sensory demands during parenting, including sound, touch, and visual input. This article gave me a deeper understanding of why parenting has been challenging in my experience. The constant demands of motherhood push my nervous system into a state of constant hyper-arousal, and the strategies that I used in the past for self-regulation became unavailable once I had a living child.

I became curious to explore this topic further and decided to dive deeper with my research team of occupational therapy students. We developed an online survey to learn if what the researchers discovered in their qualitative research study was relevant to a larger sample size. We explored autistic mothers’ sensory experiences and the impact of these on their daily lives as a parent, including habits, routines, physical health, and mental health. I am excited to share what we discovered.

Autism Diagnosis in Women

Most autistic mothers are not aware of their diagnosis at the time they enter their new parenting role. They find motherhood challenging and overwhelming but do not know why. Due to fear of being perceived as a “bad mother,” they rarely share these feelings with others and feel isolated.

Due to the high rates of masking (hiding or suppressing autistic traits) in women, there is a great deal of misdiagnosis or no diagnosis at all. This is compounded by the lack of awareness from health care providers of the presentation of adult autism, especially in women, resulting in limited access to receiving a proper diagnosis.

Many autistic mothers begin exploring their own neurotype once their child receives an autism diagnosis. They recognize traits in themselves that they see in their child and wonder if they, too, might be autistic.

Sensory Demands During Parenting

When an individual becomes pregnant and enters parenthood, sensory demands increase. Autistic mothers may experience significantly more sensitivities through multiple sensory systems. For example, increased auditory (hearing) reactivity can result from the baby crying, noises from toys, and too much talking as the child grows older. Being a mother also involves increased tactile (touching) input. This is seen with breastfeeding, which is sometimes painful and overwhelming, as well as a need to soothe the baby, often requiring physical touch and rocking.

As autistic mothers care for their children, they are at a higher risk of their nervous system being dysregulated because of pre-existing sensory sensitivities, increased environmental sensory demands of their day-to-day activities, and constant caregiving. In addition, babies are not able to self-regulate and rely on their parents’ nervous system to achieve regulation, which is called co-regulation. Therefore, when the mother is dysregulated, it often means the baby is as well. This can often lead to a spiral of co-dysregulation that leaves the mother confused, overwhelmed, and feeling as if she is failing as a parent.

Impact of Sensory Sensitivities on Daily Living

The heightened sensory demands of parenting affect autistic mothers' ability to engage in their daily activities in the same ways they did before having a child. This is particularly observed in the following areas:

• Sleep
• Self-care
• Childcare
• Socializing
• Emotional wellness

The disruption of self-regulation practices for autistic mothers.

Source: Neurodivergent Insights / Dr. Neff

Sleep

It is common for autistic people to experience challenges with sleep, and, when a baby comes into their life, sleep is further disrupted—either due to their child not sleeping through the night or not being able to fall back asleep after being woken by their child. This lack of sleep and exhaustion further impacts their mental and physical well-being as well as their ability to be present in their role as a mother and soothing their child.

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Self-Care

When autistic mothers experience periods of sensory overstimulation, their self-care practices and self-soothing strategies are disrupted. Before having a child, these individuals developed and utilized strategies to regulate their nervous systems, even if they weren’t aware that this is what they were doing. Examples include spending time alone, engaging in physical activity, deeply focusing on areas of interest, and participating in leisure activities. When autistic mothers become unable to engage in self-care practices, they find it more challenging to self-regulate when overstimulated, negatively impacting their behavioral and emotional state.

Childcare

Mothers noted that their sensory needs aligned with their child only some of the time, meaning there exists some level of disconnect or misalignment between the parent’s and child’s needs, potentially leading to a higher likelihood and longer periods of overstimulation. For example, the parent could have a hyper-arousal stress response and the child could have a hypo-arousal stress response. We can also say that one (parent or child) is sensory-seeking and the other is sensory-avoiding.

When experiencing sensory overstimulation, many mothers stated that they rarely had someone to watch their children to give them time alone to self-regulate. This statement is particularly important because if the mother is not able to take the time to regulate their nervous system, they may be unable to tend to their child’s needs effectively. That said, autistic mothers find it difficult to ask for help for fear of judgment about their ability to parent. However, women feel more comfortable seeking help from other autistic mothers because they do not feel judged. This underscores the potential benefits of establishing more supportive networks where autistic mothers can interact, nurturing their well-being throughout the child-rearing period.

Socializing

Socialization with other parents as an autistic mother can be challenging due to communication differences, feeling different, and various sensory needs. There is an increased pressure to participate in activities related to their child—for example, attending birthday parties, school parent nights, and children’s playdates. If they do participate, they experience overwhelm and exhaustion. However, if they choose not to engage, they feel guilty for not doing so. Mothers reported feeling a struggle between participating and feeling overstimulated, and not participating and feeling isolated and guilty.

Emotional Wellness

Many autistic people also experience co-occurring mental and physical health conditions. Common co-occurring mental health diagnoses include anxiety, depression, obsessive-compulsive disorder (OCD), and attention-deficit/hyperactivity disorder (ADHD).

After becoming a parent, there is often a decrease in mental well-being for autistic mothers. Women with an autism or ADHD diagnosis are at a significantly higher risk of developing a postpartum mood and anxiety disorder. The experience of postpartum depression, anxiety, or OCD combined with sensory overload often leads to chronic fatigue, exhaustion, and burnout. The convergence of these findings highlights the critical need for enhanced screening protocols for ADHD and autism in parents presenting with postpartum depression or anxiety.

Other factors contributing to poor mental health are feelings of stress, anxiety, and depression, as well as the inability to self-regulate, sensory overstimulation, and lack of knowledge surrounding their autism diagnosis. Given these compounding factors, autistic mothers often grapple with confusion and a tendency to internalize these struggles as personal failings. The coexistence of these factors, along with their autism and co-occurring diagnoses, adds an extra layer of challenge to the parenting experience of autistic mothers.

Conclusion

Several areas of daily living are impacted in the lives of autistic mothers, including sleep, self-care, socialization, and attachment with their children. As sensory demands increase during parenthood, the ability to access self-regulation strategies decreases, leading to chronic fatigue, burnout, and decreased mental well-being. This is further complicated by the fact that most autistic mothers do not discover their autism diagnosis until later in life, leading them to blame themselves because they are struggling and are reluctant to reach out for help.

Despite all of these challenges, the mothers we surveyed loved being a parent. The hope is that there is an increase in education and support of health professionals working in spaces with birthing people and/or neurodivergent children to provide family-centered and neurodivergent-affirming care. These providers can assist their patients or parents of their patients with autism identification and access to services. Increasing education about high sensory demands during parenting and offering strategies to parents on managing sensory overload will be helpful for all parents.