The first part in this series looked at the “big” challenges that autistic moms face–the difficulties presented by being diagnosed later in life, the feelings of aloneness, the troubles relating to other moms and interacting with their children’s school or doctors. These challenges aren’t surprising. Autistic people of all ages struggle with social communication. In fact, when the topic of autistic motherhood comes up, the social aspects often dominate. How successful will an autistic mother be in bonding with her children? How will she socialize her child?
What rarely gets talked about are the more mundane aspects of parenting: time management, decision making, organization, running a household. Perhaps there is a tacit assumption that autistic women will forgo motherhood if they struggle in this area? Parenthood is rarely mentioned in discussions of independent living and the skills that autistic youngsters should be equipped with as they age out of the educational system. College? Yes. Work? Yes. Relationships? Perhaps. But parenting seems to get overlooked.
In reality, there are already many autistic parents. Yet we seem to be largely invisible when it comes to autism-related supports. Services are available for autistic children and for parents of autistic children and for autistic adults who live with their parents or in supported living arrangements. But supports for autistic parents, regardless of their children’s neurology, are mostly absent from the landscape.
Perhaps autistic parents aren’t offered supports because they appear to be getting along fine. Most of us manage to raise our children quite successfully, often while working, attending college, or running a household. Years of practice passing help us quietly blend in with the other moms. No one sees our meltdowns. No one knows how much harder we’re working to meet the daily demands of parenting.
In talking to other autistic moms about the day-to-day challenges that they face, many said that a small amount of practical support could make a big difference. Take cooking for example. When my daughter was young, my husband worked evenings, which meant two dinner times. Since I wasn’t much of a cook, there was always a stock of Kid Cuisine frozen dinners on hand. I’m sure home-cooked dinners would have been healthier for my five-year-old, but those frozen dinners were as close as I could get to a balanced meal for her on a lot of evenings.
Kmarie echoed this sentiment. When her three children were younger, she felt that she was able to “feed their minds but their mouths are a different matter. They always had food but it was cereal or toast or my mother’s cooking.”
What if an autistic mom could sign up for a service that provided nutritious dinners, ready to be heated up each evening? Eliminating the stress of shopping for, planning and cooking dinner would reduce that mom’s stress and enable her to spend additional time each day with her children.
Amanda, whose four children are adults now, had another practical request: “someone to call to come and help me do a ‘super clean’ on the house when it got over my head.”
Keeping a home clean can be hard when you have executive function impairments. What if autistic moms who struggle with housekeeping could request a cleaning service twice a month to do the basics like vacuuming and cleaning the bathroom and kitchen?
Managing the household often falls to moms, and for autistic women, the multitasking required to manage a household while caring for children can be taxing. Most of the women I talked to said that if they had help with the one or two specific things they found most difficult, parenting would be much easier. In addition to help with meals or cleaning, assistance with grocery shopping or transportation to the children’s extracurricular events were frequent requests. And these types supports aren’t unusual; they are supports that many disabled people are already receiving.
While none of the mothers I talked to for this article cited a complete lack of household management skills, many said that having some help in their areas of need would allow them to focus more on their parenting strengths. Compared to the millions of dollars we spend on other areas of autism research and support, the cost of these services would be relatively small. Especially in relation to the potential benefits. Taking the most difficult tasks off of an autistic mother’s plate not only reduces the practical challenges she faces, it lowers her stress levels and makes her a better parent.
Another support on the wish lists of many autistic mothers is respite care. This support is often offered to parents of autistic children, but the only autistic parents who seem to get respite care are those who also have autistic children. For an autistic parent, however, raising an allistic child can also be very demanding and create a need for regular respite.
Fatigue–whether related to sensory overload, the demands of socializing, or simply the cost of getting through the day as a disabled person–is a lifelong challenge for many on the spectrum.
Lucy explains that while she knows all parents feel tired at times, the extreme isolation she felt as an autistic mom made it harder for her to cope. “It would’ve helped to have a place, such as daycare, to put them [her two children] during times when I was overwhelmed or terrifically fatigued.”
Respite care would also help moms on the spectrum address the issue of competing needs that arises in families with autistic parents and children.
For example, Kim says that when her autistic son was an infant, the sensory issues were overwhelming: “My son would scream a lot and it was really difficult to handle, as well as the constant touching and how draining I found breastfeeding to be.”
Our sensory sensitivities don’t disappear when we become mothers. Nor does our need for time alone to recharge. Now that her son is older, Kim balances her own self-care needs with her son’s needs by arranging for her son to occasionally spend one or two nights with his grandparents.
“I am able to recover and refresh myself,” she says. “Support in the way of being able to have that sooner would have been nice.”
Some of the women I talked to rely on family members for respite and other supports. Those who don’t have family members that can help out spoke of how difficult it is to cope with sensory overload, fatigue, and the sometimes overwhelming demands of motherhood. It would be easy to say that autistic women who struggle with these things simply shouldn’t become parents, but that would be denying women on the spectrum a basic human right.
Instead, we need to support autistic parents in ways that make a real difference. While there is no “one size fits all” answer when it comes to practical support, the responses of autistic mothers suggests that there are some supports that would make a big difference in their lives and the lives of their families.
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.