If you Google “autism” and “mother,” you’ll find hundreds of references to mothers of autistic children for every mention of mothers who are autistic. It would be easy to assume–as perhaps many people have for a long time–that autistic mothers simply don’t exist. But if you dig a little deeper, you’ll find that not only do we exist, we have a unique experience of what it means to be a parent.
While there is no single definitive model of autistic motherhood, many of us share similar experiences. This 3-part series will look at what it’s like to be a mom on the spectrum–the challenges and the strengths–as well as what kind of supports autistic parents say they would benefit from.
As someone who was undiagnosed when my daughter was young, I wasn’t surprised to hear again and again from other autistic moms how beneficial an earlier diagnosis would have been. Denise, who was diagnosed after the birth of some of her children but before the birth of others, explains, “I believe I have been a better parent with my younger children due to having a diagnosis and understanding my communication challenges,” she says. “Whereas, with my oldest children, I was unaware and it did impact my parenting.”
For many autistic women, being an undiagnosed adult caring for a baby or toddler was confusing and frustrating. We knew that parenting would be challenging, but a lot of us sensed that we were facing challenges that other moms didn’t seem to have.
Erika, who has four daughters, recalls how difficult those early years were. “I had no social network and very little support at home. Having a diagnosis or even knowing I was autistic might have saved my marriage and some of my social relationships, which would have greatly benefited my kids.” Many of the women who shared their stories for this article echoed Erika’s frustrations.
Often the demands of motherhood combined with postpartum depression heightened the sense that something was “wrong.” Some, like Puddy, knew that their adjustment to parenting was especially hard. After experiencing unmanageable meltdowns, continual sensory overload and postpartum depression with her second child, who suffered from reflux for the first year, she says, “At the time I didn’t know I was on the spectrum and just thought I was going crazy.” Looking back, she believes that being on the spectrum and not knowing it contributed to her postpartum depression as well.
The first few months of motherhood were just as challenging for me and I had similar doubts about my ability to cope with the day-to-day demands. I was lucky to have a supportive husband who could step in when I needed a break but many autistic moms aren’t as fortunate. Knowing that I was on the spectrum, and more importantly what that meant in terms of sensory sensitivities, emotional regulation and managing stress, would have been a tremendous help.
Raising Social Children
One of the traditional tasks of motherhood is the socialization of our children. When you don’t understand social rules to begin with, this can be a daunting proposition. E. Smith, whose son is now six, recounts how frustrating those early years were: “As a young mom I felt really alienated, because I didn’t feel up to chatting up other moms at the park, and even when I did, they regarded me as some kind of freak because motherhood seemed like so many unmanageable chores to me.”
Whether we have a diagnosis or not, it quickly becomes obvious that we’re not like the other moms. Everything from arranging playdates for our toddlers to communicating with our children’s teachers can prove daunting. When asked about helpful supports, Amanda says she wishes that she’d had someone to liaison with her children’s schools. Now a grandmother of four, she recalls that “the school thought I was some sort of crazy lazy wild mum . . . raising 4 kids to 3 different dads.” Additionally, she felt that she “never fit in with the other mums . . . and this added to my depression.”
Sophie points out how a parent’s lack of social skills can have a ripple effect on her children. Citing her own difficulty with befriending other parents and teachers, as well the loneliness of her early years of motherhood, she adds, “It’s been hard to teach the kids things we ourselves are no good at.” Several parents said that some form of coaching, advice or instruction on social skills for the family would be beneficial, especially in the preschool and elementary school years.
Nearly every woman who shared her story for this article felt that she was a good parent and yet most said they experienced alienation, guilt, depression, loneliness or inadequacy when comparing themselves with ‘other moms.’ As Kmarie put it, “I have a huge support system that makes up for my deficits but I also maximize my gifts. I love parenting on most days but . . . I also feel guilty every night because I am so different from other moms . . even if I offer more.”
Easing the Social Challenges of Motherhood
Being a mom is an inherently social activity. When our children our young, we interact with them all day, every day. We meet other parents at play groups, school activities and sporting events. As our children’s representatives and guardians, we have to effectively communicate with teachers, doctors and countless other professionals. All of these roles are essential to childrearing and all can be adversely affected by social communication difficulties.
Yet, there is a distinct lack of services for autistic parents. Some parents are able to take advantage of parenting programs offered to young, first time or disadvantaged parents. For example, Jen, a single mom to a thirteen-year-old boy, recalls how her local social services agency arranged for her to receive home visits and attend a playgroup as well as go to a weekly family support group. All of this contributed to increased social interaction for her and her young son. “The main thing I learned from these activities,” she says, “was that I was a better parent than average and just how much I needed a break.”
While this kind of program is valuable, autistic parents have needs beyond that of the parents who are the targets for typical parenting classes or support programs. Specifically, autistic moms say they would benefit from the following social supports:
- Interaction with other autistic mothers for social support and validation. Because being a mom on the spectrum is a unique experience, having other autistic moms to turn to is essential. Jana, whose own mother is on the spectrum, says she’s received a lot of valuable advice about coping with two young children while pregnant with a third. Seemingly simple things like intentionally using the children’s nap times to personally recharge and the importance of structure in daily life can be critical for autistic moms with young children. Who is more aware of this than autistic women who have been new moms themselves?
- Parenting coaching or mentorship. In addition to a social network of other autistic moms, some women felt they would have benefitted from structured coaching or mentorship. Several participated in parenting programs and found them helpful. Others longed for a role model. Anna, who suspects her mother is also on the spectrum, wishes that she’d had “someone to provide advice and support–to model parenting for me.” Because she grew up without an adequate mothering model, she says, “I didn’t know how to parent my children and what was ‘normal.'” She also expresses the fear of many women who struggle with mental health issues or are perceived as “weird” by society–that to have asked for help with parenting would have resulted in punitive treatment rather than support.
- Help with family communication, including parent-child and partner communication. Susan sums up the feelings of many autistic moms when she says, “Had I realized I was autistic, I could have sought out social situations and/or family therapy that would have helped us interact with each other and learn appropriate social skills.” Autistic parents will never be neurotypical in their communication and they don’t need to be. However, we can learn more effective ways of communicating within our families and with outsiders. This can be particularly important in mixed families. My husband and daughter are not autistic and over the past two decades, they’ve essentially been part of a cross-cultural exchange. My daughter translates between neurotypical and autistic communication styles much like any other child raised in a dual-language home.
- An advocate to assist in communication with schools, doctors and other professionals. Many of the situations in which mothers are expected to advocate for their children can be intimidating–or simply hard to navigate–for someone on the spectrum. When asked what kind of supports would be helpful, Stephanie replied that she could use help in social situations like parent-teacher conferences or the PTA. “I didn’t know what to expect (and still don’t). I don’t know if I’m doing it right or not.” In addition to all the typical social situations that most moms encounter, many autistic parents also have autistic children, who need strong parent advocates. Assistance in this area would benefit the entire family.
The next part in this series will look at some of the practical challenges of autistic motherhood, including sensory issues, time management, decision making, organization, and running a household.
About the Author: Cynthia Kim is the proud owner of many labels including woman, wife, mother, writer, editor, entrepreneur and most recently, autistic. Diagnosed with Asperger’s in her early forties, she began blogging about life on the spectrum at Musings of an Aspie. She is the author of “I Think I Might Be Autistic: A Guide to Autism Spectrum Disorder Diagnosis and Self-Discovery for Adults” and is a regular contributor to Autism Parenting Magazine. When she’s not writing about all things autism, she indulges her passion for words by running a small publishing company and occasionally dabbling in fiction, which sometimes gets published.