Motherhood: Autistic Parenting and Supports That Make a Difference

Motherhood: Autistic Parenting and Supports That Make a DifferenceThe 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.

Autism Women's Network

5 thoughts on “Motherhood: Autistic Parenting and Supports That Make a Difference”

  1. Reading this, I wonder if some of this could get started via informal partnerships. For instance, as someone who lives alone, I would prefer to cook more but there doesn’t seem much point, any recipe makes too much food, and I’m pretty much stuck with 1-dish meals since if one recipe is too much, three definitely would be. It would be pretty feel-good and win-win if people like me were enlisted to deliver dinner to a family in the neighborhood. Without external funding, it could be as simple as the overstressed parent(s) paying a single person the cost of ingredients, maybe plus a small fee to compensate for effort. Since currently they’re paying for the ingredients AND suffering, it should be worth it.

  2. These are great ideas. I would also add help with meal planning/shopping/coupons and budgeting. I am a spectrum mom with a spectrum child and husband and also a caregiver for my obviously spectrum but undiagnosed grandfather. Fun times. Finding support for my son is hard enough and I don’t even know where to start looking for support for myself, my husband and my grandfather. Just having someone to help navigate support networks would be extremely valuable.

  3. I suspect that my daughter and son in-law are both on the spectrum. Their eldest son has been diagnosed with Aspergers and I also think my ex-husband has it.
    As a consequence, and through a series of petty events the social services have become involved in their lives! Not in my opinion because the children are in any danger but because of narrow minded views on parenting! For goodness sake these children are very loved and told so on a daily basis. Not to mention that they sit together for dinners (home cooked and well balanced) and are also read to everynight. But because my daughter sometimes takes them to ‘stay and play’ with dirty faces she is thought of as weird and unable to cope.
    My concern is – should the fact that the parents could have undiagnosed aspergers be mentioned to social services, or not?
    On the upside, that would explain a lot about the parents and their parenting style. But we are worried that it could also lead to more interference and less understanding – due to ignorance and prejudice.
    My daughter is convinced that if SS know that she is feeling depressed and could have Aspergers, that they will use it against her to take her children away!!!! Any thoughts on how to handle this would be greatly appreciated.
    My daughter has enough to deal with, without being made to feel inadequate as a parent.

    1. I’m sorry to say. But they will use this against her. I suffer from Autism and the social services saw how messy and disorganised my household can be sometimes. Also my time management and lack of support and isolation . I confessed this to the social services expecting them to know how to help somehow. Now my birthday their taking me to court to pursue care proceedings for my 9yr old child. Dispite I am bonded with him and we love each other very much. I have to admit I smoke canibis to that does not help but I done it for my anxiety also I was in a unhappy relationship at the time his now moved out and im pregnant with his child. I feel devastated that they make me feel that I use my autism as a excuse when I don’t. I need help to be the parent they want me to be so I do not loose my wonderful son. But they don’t make clear exactly what I need to do and expect me to guess everything. I really need help and support I feel as though social services are pulling my heart apart. I was told also that by law they should offer me some kind of support that they refuse. Any advice i would be very grateful thanks.

      1. Hi Sarah
        It has been a long time since I left my message on this website. And you are the only person who has replied! So I did not want to leave you without a response.

        My daughter is now free from social services and doing well. It seems that her youngest son may also have Aspergers. So it is going to be challenging for her – to say the least. But I help as much as I can.

        I am sorry to hear about your troubles. I think that neuro typical people, with out personal experience with someone on the autism spectrum, find it very hard not to measure everyone against the same yard stick! And that simply doesn’t work.
        All 5 of my siblings and I, grew up in a very dirty house but it did not mean that we were unloved or uncared for. My mother just hated house work!
        Do you not have any family available to help you?
        The biggest problem we found was that social workers don’t seem to understand that what you see is what you get in an Aspergers household! There is no frantic running around to make things appear as we think they should be. And no changing the way the aspie relates to people either.
        In an A typical household people run around cleaning and making sure everything is perfect before the social worker arrives. And they say what they know they should say to please and reassure the social worker.
        In an aspie household – nothing changes. So I suspect the social worker is thinking ‘They knew I was coming, so this must be an improvement on how they usually live!’

        Do you have ‘Home support’ in your area? They can be very helpful.
        Also, have you spoken to your sons teacher? Perhaps they can make some suggestions to help you.

        Good luck. I hope it all works out.

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