Autistic Motherhood: Honoring Our Personal Choices

When I became pregnant with my daughter, I had no idea that I was autistic. In some ways, missing that key information about myself simplified my path toward motherhood. I wasn’t faced with making the decision to become an autistic parent. I didn’t have to try to guess at how my sensory sensitivities might be worsened by pregnancy or a colicky infant. I had no idea that my executive function might not be up to the task of cleaning up after a toddler and making three healthy meals a day for a growing family.

Essentially, I went into motherhood thinking I would be just like all the other moms I’d read about in What to Expect When You’re Expecting and Dr. Spock’s Baby and Child Care. Once my daughter was born, it quickly became obvious that I wasn’t like the other young moms I encountered in play groups and neighborhood parks. I had no idea why, but I knew that I was facing some practical challenges that few of the other moms around me were.

So I wasn’t surprised when so many of the women I talked to for this article mentioned those same day-to-day challenges as being among the most difficult parts of motherhood or the primary reason for choosing not to become a parent. Carolyn, who is 30, cites her executive function impairments and difficulty sharing her home with other people as the primary reasons for her choice not to have children thus far. Though she loves working with children, she says, “I’m terrible at setting goals or making plans or schedules, and most days even preparing three square meals is a challenge. I’m too afraid my deficits would lead me to be a neglectful parent, and I’m not about to bring a child into the world as an experiment to find out for sure.”

Talking honestly about our choices like this can be hard. Going into parenthood undiagnosed creates one set of issues; facing the choice to become a parent when you know that your disability might limit your parenting abilities creates an entirely different dilemma. For many of us, our parenting experience is a mix of the two.

Autistic Motherhood: Honoring Our Personal ChoicesWe enter motherhood with little knowledge of our differences and soon discover that having a child stretches our coping ability to the limit. The decision to have additional children then becomes a very difficult one. Patricia, who has two young children, would love to have another child, but says, “I am reluctant to further limit my ability to cope by having another child . . . it doesn’t seem fair to my children, who have emotional difficulties of their own, to have a mother who is so stretched and volatile. I struggle as it is, without a third child.”

As a young mother, I felt the same way. Although my husband wanted a big family, even without knowing that I was autistic, I instinctively knew that one child was all I could reasonably manage. While one child felt right to me from the start, many autistic women give up on dreams of a big family after discovering how difficult parenting is. Kezza, who has a two-year-old, dreamt of being a fantastic mother to a large family. After the birth of her son, she struggled with anxiety and sensory issues, leading to a decision to not have additional children. “I grieved this for awhile,” she says, “Before I realized I was on the spectrum I had this dream. Now I know how unrealistic this is for me. My diagnosis saved me from taking on more than I was able.”

For those women who know that they’re autistic,  the sensory challenges and physical changes of pregnancy are a common source of apprehension. Kerrigan, who has three children, remembers that she was “anxious and very scared of the birthing process. I probably read fifty books on pregnancy.”  Two of the women who shared their stories for this article said they planned to adopt because, while they wanted to be parents, the idea of being pregnant sounded too difficult.

Finally, among women who are formally diagnosed, there is the concern that an autism diagnosis could be a liability when it comes to maintaining our rights as parents. Ine, who would like to have children but doesn’t think it’s likely, worries that “my diagnosis might be used to declare me unfit as a parent in some way, for example in a custody case.” This is a very real possibility. There is a long history of women with intellectual and/or developmental disabilities having their rights to bear or raise a child interfered with.

Autism Raising Autism

What about the possibility of having an autistic child? The big name autism “awareness” organizations would have you think this is a disaster to be avoided at all costs. But actually autistic parents? Their views are more nuanced.

A few women spoke of the difficulties they themselves have experienced as a result of being autistic in a primarily neurotypical world. Petra, for example, put it bluntly: “I consider life a struggle and don’t want to inflict that on others.” I think we can all understand this sentiment. It can be hard to cope at times and the idea of bringing a child into the world to face the struggles we face is daunting.

However, as an autistic parent, we have a secret weapon–one that can make our autistic children’s lives less challenging than our own have been. Kim echoed the sentiments of many autistic moms, explaining how she and her autistic son have a special bond: “We love and accept each other enough to be ourselves. I am able to help him put words to things he doesn’t yet understand. I am able to help him figure out sensory issues that bother him and help him find solutions that work for him. I’m a problem solver and I work at something ’til all the kinks are worked out.”

Acceptance and understanding were common themes when autistic mothers talked about their parenting strengths. “It has been a huge benefit to have a shared neurology with my son,” says Puddy. Not only is she able to read his stress signals and coping levels, helping him to prevent escalations in his behavior, she says that “he finds great comfort in the fact that I can understand his need for routines and stimming that others see as odd.”

Again and again, autistic moms with children on the spectrum echoed Kim’s and Puddy’s sentiments. Many spoke of feeling fortunate that they can be there for their children, able to understand their experiences and needs thanks to firsthand experience. In mixed neurology families, autistic parents can help nonautistic family members understand an autistic sibling or child better. Puddy says she acts as a translator, helping smooth out the differences in communication styles between her autistic son and neurotypical husband.

Of course, not every aspect of being an autistic parent to an autistic child is a benefit. Mazaria, mom to three sons on the spectrum, feels that she can “relate to and support them better than a mom who didn’t have the same experience or mind processing. I don’t find my kids weird or tell them that they are ‘babies’ when they exhibit behaviors that are not age appropriate. However, if we are all escalated, it is hell for us.” Some of her sons’ sensory seeking activities are triggers for her own sensory sensitivities, making it challenging at times to balance everyone’s needs. She also worries that her meltdowns might be scary to her sons and relies on her husband to help her cope.

Looking Back

My own house is quiet these days. My daughter is grown and living on her own. Somehow, I made it through the difficult early years, finally breathing a deep sigh of relief when the school bus pulled away every day, leaving me with a few precious hours of alone time once again. We navigated the tricky waters of adolescence, and made it across that imaginary parenting finish line that is college. Of course I’m still a parent, but being the mom to an independent young woman is very different from being the mom to a toddler or a grade schooler.

I’m in a place now where I can look back on the journey and say that, without a doubt, all of those hard times were worth it. Being a mom changed me in ways that I could never have predicted, and all for the better. It’s tempting to say that if I’d known I was autistic I would have done things differently, been a better parent, but that’s a game that never ends well. Instead, I remind myself that I did what I always told my daughter I expected of her–I did my best.

12 thoughts on “Autistic Motherhood: Honoring Our Personal Choices”

  1. Pingback: Honoring Our Choices | Musings of an Aspie

  2. Wonderful words 🙂 I too am thankful for my own special aspie mind and how I can make my son feel completely accepted and understood when he doesn’t know what is going on in his own body. Neither of us have been formally diagnosed but share many many traits. I love that I can connect with him on such a fundamental level.

  3. Aiyana Henderson

    Hi, I’m new to this blog! I’m not a parent, but I’ve decided to only adopt if I ever have children. Autism has its strengths and weaknesses, yet I feel raising a neurotypical child would be better, for me, than having a child who has my Asperger’s.

  4. This was the best article. I so needed to hear that other mothers face some of the same challenges and questions.

  5. Thank you for this! I feel this also mirrors my experience and it’s good to hear from other autistic mothers (as well as autistic women who decide to not have children). I don’t think I would have ever been diagnosed had I not had a child, because once his autism became more apparant then I could see my childhood experiences as being similar to his. Maybe in time I would have figured it out, I don’t know.

  6. I just discovered this blog series today, and I just wanted to thank you for putting this out there and bringing attention to this challenge. As a psychologist who specializes in working with families struggling with Asperger’s/autism spectrum disorders, I see supporting parents who themselves have social, sensory, and emotional regulation challenges as an area that needs significantly more attention and focus. In my work, I do offer a lot of support to parents, but I find that it’s the nonautistic parents who really make use of that support. What do you think would help autistic parents with reaching out to folks like me who would love to provide specific, targeted support for their challenges?

  7. Stumbled upon this today and I just want to say thank you. Thank you for helping me feel less alone. I have no diagnosis for myself and will probably never persue one, but I also wasn’t aware of my “aspie” tendencies before becoming a mother. Though I grew up socially awkward I’ve been successful by every definition as an adult. My husband and I married with the understanding that we would have a large family and I would leave the workforce to be an at home parent, the reality was far different than we ever imagined it would be. I was such a nervous wreck from the constant demands of a newborn I quickly became an insomniac. I came to recognize from my sensory sensetivities that I could never function with multiple children and we had to accept being a family of three. It was the most difficult thing we have ever faced in our marriage. We’ve come a long way since that first horrendous year but I still have a hard time coping. My son drains me so completely by the end of the day that I have nothing left for friends or even my husband. I spend my evenings in solitude trying to recover enough for the next day, rather than being with my family. That’s been very hard on our relationship. It’s so encouraging to hear another woman who has raised her child and made it through. My son is only two and I can hardly wait till I can send him off on the school bus. He has sensory issues of his own, and while I can understand where he’s coming from, it does serve to make my experience mothering him that much harder to navigate.

  8. I’m a newly diagnosed mother who was tricked into adopting out my son to my cousin when he was 7 Now I’m not allowed to talk to or see him. It’s sad but nice to know I’m not alone.

  9. Hello, I was so inspired by reading this article. I currently work with adults with profound learning disabilities; some of whom who are autistic. I key work for a lady with autism and have such an amazing bond with her. I find autism very fascinating and am always curious to learn more about it. I am also currently applying to study Midwifery and so from a Midwifery glance this article is even more eye opening. I would love to be able to personally email anyone and chat to them about how they found their pregnancy and postnatal period. Please let me know if you would be interested, many thanks.

  10. Pingback: Синтия Ким: «Аутичное материнство: уважение нашего личного выбора» | Аутичные женщины и девочки

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