Halloween 2012. I am a great Mom. I love my Son and we have a great relationship. I’m also autistic.
“I know a lot of other single mothers and none of them have the difficulties that you do.” My Mother said this to me in April of 2011 and it still stings. It both upset and enraged me when she said it, and it never stopped. I was raised to believe that the best way to get something done was to do it yourself. It has always been very difficult for me to ask other people for help. I don’t know how to phrase the words. What order do I put the words in? How do I say it? I would practice sentences while standing in the mirror, wondering which variation was the best one. The one that might make the other person realize that I truly did need some assistance, even a little bit. Most of my attempts would fail. I not only wouldn’t get assistance, but it would start a family fight. Not long before I went no contact with my Mother, she said to me, “It is not about your expressing your needs–it is HOW you go about it.” So not only did I obsess and worry about expressing my needs, but in addition I had to do it in some special way that would not offend my Mother’s personal brand of conditional love. And that’s the problem. Being her daughter had conditions attached. And I seldom met those conditions. A challenging situation, even for a neurotypical mother, or daughter.
I’ve been a single Mother for the majority of my Son’s almost twelve years. For most of that time, people have said things to me such as “I have NO idea how you do it all”. You know, expressions of amazement at my apparent ability to be some rare breed of super woman. Given this, it kind of shocked me when my Mother dropped that barbed insult on me about all of the amazing single Mothers she knows that effortlessly glide through their days, nary a singly bump along the way interfering with the graceful choreography of their maternal pride. (insert copious amounts of sarcasm, here.)
I’m moved to write this on this particularly hectic morning. Even though I am moving in two days and have tons more boxes to pack. Mostly because I just read the following article on Autism Women’s Network, Motherhood: Autistic Parenting and Supports That Make a Difference, and found myself relating to so much of what I read that it actually hurt. The hairs on my arms bristled sharply and I could feel them grating on the fabric of my hoodie. My jaw clenched, and the familiar pain of TMJ disorder sprung into it’s dull, droning ache. I was becoming angry. Angry that for so long, other people have completely ignored my requests for help, no matter how I worded them. My own family left me alone and socially isolated when I needed them the most. My own Mother consistently cared for my Brother’s children, but had constant excuses or issues when I asked her to help in caring for mine.
Constant issues, what do you mean by that? I will give you a few examples. Once, when my Son was about four, I wrote my Mother a letter, begging her for more involvement in my Son’s life. I told her how I was struggling with sleep issues, anxiety and exhaustion. Her response? Basically, to tell me that maybe I shouldn’t be a Mother. Maybe I should give my Son back to his Father, or up for adoption. I was told “I raised mine, you raise yours”. It was inferred that if I wanted help, I should “pay” for it. Another time, both my Son and I had the flu. My Son had been hospitalized. I was so weak I couldn’t carry him up the stairs. I had no help. My Mother refused to come into our house. She left us alone, the only gesture of goodwill to leave a bottle of ginger ale and a prescription from the doctor in a bag outside my front door. And my favorite, when she verbally traumatized my Son in the most cruel and abusive manner, before calling the police to have me arrested and have him taken away from me. My crime? Telling my Mother that she had to watch him that evening, because a very ill friend of mine had just received bad health news after his visit to the Mayo Clinic and needed someone to talk to. I know that if my Sister-in-law had asked my Mother for assistance under this exact circumstance, she would have gotten the following answer: “Why sure, dear! I’d be glad to watch your four perfect little angels. I can watch them for a week if you’d like to book some spa time, or go shopping with your girlfriends!”. But me? I get the police called on me. And my poor Son got to listen to my Mother call every single person on her contact list and listen to her badmouth, gossip and complain about me. No Grandmother should do that to her Grandchild. And no Mother should do that to her Daughter.
Not only have I severely lacked familial support as I have been raising my child, alone (except for my brief abusive marriage)– but my family actually used my requests for help against me. They made fun of me, belittled me, and tried to make me feel like I was a bad Mother, a bad Daughter, a bad, weak, pathetic person. Mind you, I didn’t ask for help very often. Because it never went well. My Mother frequently used any event of assistance against me in future “battles”. She’s a score-keeper. Always storing events away in her ammo closet, ready to launch them when needed. She only saw what she wanted to see. And in my situation, what she believed was that I did not need any help. Why? Because I had a successful business, a nice car, a nice house, and nice clothes. She saw these things as complete indicators of me being alright. (The true irony of it all is that I only forced myself to accumulate all of those things because I thought she might be proud of me, or like me more. I didn’t want to be an embarrassment to her. I wanted her to accept me) This made little sense to me, seeing that my Brother and his Wife lived in a 1.5 million dollar house with a remote control toilet seat, but everything with my Mother was conditional. My Sister-in-Law is a “fragile” person. The squeaky wheel gets the grease, and she was the squeaky wheel. Apparently, she knew exactly how to manipulate my Mother into giving her the help she needed. (Even though she had a long list of friends with children, “mommy and me groups” she attended, and an expansive social support network). She couldn’t have been more opposite than me, in every way. She even had parents who would come to visit, and cook for her- filling her freezer with delicious, gourmet meals that she only needed to heat up. It was a constant source of strife for me, watching my Mother fawn over her. Knowing that she was the daughter that my Mother never had. I was an embarrassment.
Which is such a shame, because I have the most amazing, sensitive, wise and beautiful Son. My Mother is completely missing out on watching him grow. She claims that I have “taken him away” from her life, but that couldn’t be more untrue. She has not only been incredibly avoidant of being involved in his life, but she was also extremely abusive and threatening to him. How could I possibly let her see him after what she did? My Son and I are a “package deal”. I wrote the following to my Mother, after one of the many arguments that resulted from my vying for her to be involved in his life:
“He and I are a package deal. You can’t expect me to feel comfortable or even want him to spend time with you when you feel justified in belittling or insulting me, comparing me to other single mothers like I’m a high school girl, and repeatedly smearing in my face things I have sincerely and repeatedly apologized for. Everything is fine as long as I express NO opinions, NO emotions, NO needs. When I do, as in expressing them in relation to him? Every single time has resulted in a skirmish or war. That ends up being something that “I did to you” or “I took him away from you” or any of a long line of blame-casting, distortions of events, extreme dramatizations and complete denial of the core issue, etc.”
Which finally brings me to what I started writing about in the first place. It just takes a while for me to get there sometimes. I’d say that most single Mothers would agree on one thing: being a single Mother is very difficult and challenging. Heck, being a married Mom is probably really difficult and challenging as well! But I can’t relate to that, so I’m writing about my experiences as a single Mom. I’m positive that every single Mom out there has wished for more help or assistance of even the most simplest type. Help with cleaning the house once a month. A nutritious meal once a week. Someone to run an errand, pick up groceries, or watch their children so that they can go to a Doctor visit. It’s completely normal to want this. Yet, it’s something that I have only had in my life when I have either paid for it, or begged for it and then, known that it had strings attached.
You see, the only family I have is my Sister, and she lives about 12 hours away. I have lived in a very large and busy suburban neighborhood for two years and not been able to forge even an acquaintance with a single person. I am having lunch today with a friend from high school I have not seen in 26 years, whom I reconnected with on Facebook a few days ago, but other than her? I don’t have any local, “real life” friends. On most days, the only person I see is my Son, or a person who rings up my groceries. I don’t mention work, because I primarily work alone. When I do engage with a colleague it’s strictly business. I learned the hard way not to combine work with friendship. I am living a life that is extremely socially isolated and almost completely lacking familial and social support. This is a source of extreme anxiety for me. What if I get sick? What if I get hurt? Last year, I had a minor surgical procedure and I had to fully prepare the household with food, medicine before-hand. Then I had to take a taxi to the surgical center. I had to hire a nurse and pay her almost $500 to drive me home from the surgery and stay for 24 hours in my home. She watched my Son while I recovered, made him dinner, helped him with his homework, walked him to the bus in the morning. Yes. If there is one thing I am lacking, it is support.
And here’s the kicker. Adult women on the autism spectrum are not only the ones most likely to NEED support, but they are also the ones most likely to be sorely lacking support. An excerpt from the article on AWN that I linked to earlier:
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.
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.
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.
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.
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.
One of my biggest fears as a single Mother has been that my requests for help would be equated with my not being a good enough Mother. This is quite possibly because when I have begged for help from my own Mother, there are numerous times in which she or my Brother, have mentioned things about taking my Son away from me. I still can’t grasp why they made me feel threatened and scared. Wouldn’t it have been easier for them to work with me to come up with solutions? Instead, they put me on the defense and made me even more isolated. They made me feel pathetic, weak, and bad. Even after I told my Mother about my diagnosis, she did this. Why? Because she did not see the deficits- my strengths were simply too glaring for her.
In my Mother’s eyes, I did not need help because I could support myself. She did not see the emotional, social and executive function skills I lacked- because she was too busy wondering if I was wearing a pair of new shoes. She saw that I was making enough money to support myself and child, and in her opinion, this meant that I wanted for nothing. It didn’t matter that I had no friends, was socially isolated, in or out of a relationship or marriage. If there was money, there was no need for assistance. Again, a strange position that she took only with me– because as I previously mentioned, my Brother’s family was far more well-off, and they received constant care and doting.
And the truth is, that no one except for myself knows how incredibly hard I have worked at being a good parent, while juggling an insane amount of responsibility. I have done this so well that my own family refused my cries for help, instead being blinded by my independence or financial success. Perhaps if I had been less “able” to succeed in those areas, I would have been seen as deserving of help. I often wondered what those boundaries were for my family. Did I need to be living in a small one bedroom apartment? Did I need to appear disheveled? Did my child need to appear in need of a bath? Did we need to only have ramen noodles and applesauce in our cupboard? Did I need to be on social assistance in order for my needs to be “real”? I’ll never know. I’m over two years into “no contact” with my Mother and being away from the toxicity has been liberating. I can never go back. I no longer have that “nice house”, “nice car”, “successful business” or “nice clothes”. The stress of keeping up with all of that wasn’t really “me”. I sold or donated most of my belongings and retired into a simple, minimalist lifestyle where I can just be myself. Life is less stressful now, but I still lack a support system. So how are autistic Mothers such as myself, struggling? How can we get even just a small amount of assistance? How can we get people to understand that we have a really hard time asking for help, and communicating our needs? And that honestly, even just knowing that we have a fallback plan, or someone we can rely on in a pinch- is actually a huge relief from the constant churning worries in our minds?
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.
I’ve been “passing as normal” for so long that other people don’t realize just how much I need help. Being a great parent to my Son is important to me. It is so important, that in order to meet his needs, other things have to give. As a single mother on the autism spectrum, what this means is that I have to prioritize, always. Our house may be messy, but my Son gets quality time and knows he is loved. I’m constantly behind on doing bills, paperwork and taxes, but I spend hours every Saturday out on the hiking trails with him. I forgo my own self care rituals and instead put that time towards growing veggies, and preparing healthy meals for him whenever I can. These are just a few examples, but you get the idea. Something has to give in my situation. I can’t do it all, so I do what is most important and let the other things slide. I am sure that many other women in my position do the same. And that is why even small amounts of support and kindness, towards autistic Mothers can make such a difference. You have no idea how even the smallest gesture of kindness or assistance can go. It is in fact, so rare- and so unexpected in the life of a woman such as myself, that it is actually uncomfortable when it is received.
A few weeks ago, I took my Son to a movie. The woman sitting in front of us was alone, and wanted to go to the concession stand. She asked me to watch her purse. I happily agreed to do so. When she returned, she handed us a large bucket of popcorn. I was gobsmacked. I didn’t know what to say! Being given a bucket of popcorn by a stranger made me flush with hope for humanity, but at the same time it made me very uncomfortable. I actually didn’t understand why the woman did what she did. And to be honest, I spent the rest of the movie trying to determine the various reasons why she might have done so. I tried to thank her (again) after the movie, but she walked away quickly, exiting the theatre. The incident still seems to strange to me. And I think that is what bothers me about it- that someone was kind to me, and it felt bizarre. It shouldn’t be that way, but it is. I am more accustomed to being treated poorly, than I am to random kindness. That makes me feel very melancholy, and I long to change this aspect of my existence.
Adults with autism exist. Organizations like Autism Speaks ignore their existence, but they exist. We’re out there! Many of us are even parents. The article I’ve quoted throughout this post was written by Cynthia Kim, and I recommend it as reading. Cynthia ends her article with the following. And she states it more eloquently than I can, so I will leave you with one last quote from her.
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.