It’s easy to find content and information about parenting autistic kids. Granted, plenty of that information will be contradictory, and a lot of the advice will contradict what autistic adults say about their own experiences.
What’s not so easy, though, is to find information and support for parents who are themselves autistic, especially for those moms (girls are much more likely to be skipped over for diagnosis) who weren’t diagnosed until adulthood and have built themselves a series of masking and coping techniques that may camouflage their support needs.
Autistic moms are left to figure out for themselves how to balance their own support needs, which can be increased by the stresses of parenting, with their children’s needs, which can also be more complicated when the kids turn out to be autistic too.
Undiagnosed Or Late-Diagnosed Autism Brings Its Own Struggles
Only about one in five autistic women is diagnosed as a child, according to UCLA Health. Others find out in adulthood, which can even require an uphill battle to be evaluated. Stories abound of mental health providers who ask, “Why would you want a diagnosis? Why does it matter?” Some women are told they’ll have to come up with the cost of evaluation out of pocket because their insurance won’t cover it.
Support needs in autism vary significantly, and those autistic people who can express themselves verbally, handle most of their own basic needs, and hold a job are more likely to be overlooked — but they can still have struggles stemming from autism, often in areas like sensory sensitivities, communication difficulties, and executive function.
Add Parenting To All That & It Can Be Overwhelming
By the time they reach adulthood, undiagnosed autistic women have typically cobbled together a structure that keeps their needs more or less met and enables meshing in society. Suppose you ask a late-diagnosed autistic woman how she copes. In that case, she might describe bulk-buying the only kind of socks she can stand, searching diligently for clothing items that are office-appropriate but not sensorily unbearable, and using noise-canceling headphones on public transportation, for example — all things that anyone might do, but that may be more necessary for someone with sensory processing struggles.
Then, she has a baby. The amount of new sensory stimulation that comes with a baby (spit-up, the vibration when they poop while you’re holding them, crying, crying, more crying, the smell of jarred purees, and so on) is more intense than one would ever imagine before experiencing it. Psychotherapist Amanda McDonald told Good To Know:
“Living well as an autistic person means understanding one’s sensory profile, and having measures in place to be able to meet this…Babies are in fact a whole world of sound, smell, texture and unpredictability…The exhaustion and overwhelm felt by many new mothers may well be even more intense for a mother with autism.”
Autistic Moms Describe The Positive Ways Autism Affects Their Parenting
When a late-diagnosed autistic woman has an autistic child, one thing that many express appreciation for is their greater understanding of the child’s feelings and sensations. If you grew up dealing with sensory overload and nobody seemed to understand it. You can remember just wishing that somebody would say, “I know, you’re not making it up or imagining it or being a brat, this is real, and I understand,” then the opportunity to be that person for your kids is massive.
One mom on TikTok said that sometimes being the autistic parent of an autistic child can be like “being able to be in tune with them throughout the day, as if you’re both dancing and matching each other’s steps.”
The Effect Can Be A Mixed Bag, Though
The same mom describes how her state might be sensory overload all day, migraines, and exhaustion.
This is what so many autistic parents of autistic kids describe: they’re in a unique position to understand their kids’ needs and feelings in a way they may not share if they didn’t share a neurotype, but they’re also overloaded, exhausted, worn out, and overwhelmed.
Another autistic mom on TikTok explained her own experience of only learning she was autistic after her child was diagnosed, of taking that information and using it to try to implement parenting styles more effective for their children than what she and her (also autistic) husband grew up with, and about realizing that she was suppressing her feelings because of overstimulation.
There Are No Days Off From Parenting
Autistic burnout is more than just being tired. When a person reaches this stage, they may be so overstimulated, overwhelmed, and physically and mentally exhausted that they struggle to handle day-to-day life activities, even as simple as showering and eating meals.
As a parent, though, there are no days off. There are poopy diapers every day. There are meals to prepare, sometimes very specific ones to meet sensory needs, every day. A particular shirt or blanket may be washed because it’s the only one that feels ‘right’ that day (or ever). Autism is heritable, so autistic parents have a higher likelihood of having kids with sensory needs.
So, the burnout just multiplies. As psychotherapist Danielle Aubin for Autism Spectrum News explained it:
“Many autistic parents lack the necessary support and resources to help them when they are experiencing burnout. Being a parent makes it tricky to just ‘rest’ when little humans are needing you to feed them, clothe them, play with them, regulate them, love them… most of us feel like we can’t actually take a break.”
Their advice is for the parent to figure out in advance what her ‘sweet spot’ is for the necessary amount of rest, self-care, social connections, sensory input, etc., and make sure she’s getting enough of each to keep going. Then, she is advised to find ways to recover from burnout while still parenting, such as giving a little more screen time during these periods and calling on family and community for babysitting if necessary.
Finding The Support System, Building The Support System
This still leaves many autistic moms short, particularly those who don’t have family support networks.
It’s possible that we could fight this by building our own networks of autistic moms who are willing to share and trade downtime and childcare. It’s also possible that we could work to build a better network of support on the societal level, with more options for free or income-based childcare, better access to therapy and mental health care, and other social structures that can support not only autistic moms but all parents.
In this current moment, though, many autistic moms find themselves struggling, and there just aren’t currently sufficient systems and safety nets in place to help.
