It was a challenging one to write. My original thought was “I’ll write about the decision to have or not have children as an autistic woman.” Which turns out to be an incredibly personal and complex topic. You’d think I would have seen that coming, right?
Ultimately, what I concluded, is that each woman’s choice when it comes to parenthood is the best choice for her and each person’s situation is unique. There is no “decision” in the broad conceptual sense, just many individual decisions made for countless reasons and sometimes not for any particular reason at all. I hope that comes across in the article, because I very much want it to be respectful of our choices and of the circumstances that are unique to parenting as a disabled person.
A Postscript to the Series
There’s also something that I wanted to address at some point in this series–something that’s been on mind for months as I’ve been writing about motherhood–but I never found a way to say that I felt comfortable with. Since I’m among friends here, I’m going to just throw it out there as food for thought and hope for the best. Continue reading Honoring Our Choices→
My local library has a big collection of autism books and I’m slowly working my way through them. I just finished reading one about how parents can help their autistic teen transition into adulthood. It was a fairly thick book, packed with information on friendship, dating, high school, college, work and living independently. Curiously, the only mention of marriage and parenting was a few pages acknowledging that some autistic people get married and even have children (who, the book suggested, would have very difficult lives, as they were more likely to be autistic themselves, on top of having an autistic parent). It concluded with a sentence lamenting how little we know about married autistic people because the topic just hasn’t been the subject of enough studies. I wasn’t sure whether to laugh or throw the book across the room.
But I kept reading because the transition to adulthood is important and I’m always looking for good books to add to my resources page.
There was a chapter on “living situations” near the end of the book. As I read through all of the possible living situations that the authors suggested an autistic person might find themselves in, I noticed a glaring omission. There was information about living with a parent or a caregiver, living in a group home or facility, living with a roommate or living alone. But there was no mention that an autistic teen might grow up to live with a partner or spouse, let alone with children of their own. And that got me thinking about why autistic parents are so often invisible.
There seems to be a tacit assumption that if we can manage to find ourselves a partner or spouse and have children, we’re just “not autistic enough” to need any sort of support services. This month’s article at Autism Women’s Network, Motherhood: Autistic Parenting and Supports That Make a Difference, rejects that notion and looks at some of the supports that can make a difference in the lives of autistic parents, especially moms on the spectrum.
I kicked off the series with the social aspects of motherhood because that was one of the biggest challenges for me and for many of the women who answered the survey questions. In the article, I focused a lot on the areas of difficulty that we experience and touched on some general ideas for supports.
There is clearly a big gap when it comes to resources for autistic moms. I’m wondering if any of you have found solutions to the need for social supports. Do you know of online support groups for mothers on the spectrum? Have you found ways to communicate effectively with your children’s school or have you gotten any social supports from local social services organizations? Have you enlisted help from your own parents or family members when it comes to the social aspects of being a mom? If you’ve done things that have worked, I would love to hear about them and I think lots of people would benefit from having a pool of realistic options to draw upon.
As always, I owe a huge thank you to everyone who answered the survey questions. There were more than 70 responses, many of them incredibly detailed. I’m humbled by how honestly and openly you all share your stories. Although I couldn’t include quotes from everyone, I did my best to find the common threads of our social struggles and portray those in the article through representative quotes. There are still two more articles coming, so if you’d like to contribute, please feel free to fill out the survey in the coming days.
When I started blogging, one of the first topics I wrote about was motherhood. Before posting, I gave the series to my daughter Jess to read because I wanted her permission before publishing such a detailed account of her childhood. I think she was a little shocked by some of what I wrote, but she was fine with me publishing it. At the time, we talked about how it would be interesting if she wrote something for the blog from her point of view. She’s all grown up now, a thoughtful, well-adjusted adult with her own take on her childhood.
So, fast forward a year to yesterday morning. I open my email and find that she’s sent me a post (which is right after this intro). I was super excited because I’ve been hoping she still wanted to write something but I’m not the kind of mom who nags (much).
Also! Jess says she wasn’t sure what else people might want to know but if anyone has questions for her about being raised by an autistic mom, she’d love to answer them. You can leave comments or questions for her here or on my blog’s Facebook page. Maybe we’ll figure out some fun way to turn this into a mother-daughter conversation.
Okay, enough from me. The rest of this post was written by Jess . . .
As a student in college a few years back, I studied identity, mostly related to race, which led to a lot of writing and talking about myself. Because my father is Korean, a lot of my discussions focused on him. One day, one of my professors asked me, “What’s your mom like?”
“What?” I laughed, surprised at such a vague question.
This is the final post in a series about being a mom with Asperger’s.
There’s some question about how having a parent with Asperger’s affects a typical child. I definitely see ways in which my aspie behavior has influenced my daughter’s behavior. She’s told me stories about how friends at college or colleagues at work have pointed out deficiencies in her social skills. Although she’s a very empathetic, compassionate person with a high emotional IQ, she occasionally does things that others consider thoughtless.
Recently, Jess was talking with a friend who was discouraged by his job search progress. Her response was much like mine would have been. It’s a tough job market for new graduates and you just have to keep at it. When he expressed his frustration at how unsympathetic she was being, she realized that she was saying to him what I would have said to her.
Although she understands social nuances, she sometimes chooses not to “play by the rules” because she’s seen how a less conventional approach has affected her at key points in her life and she finds some value in it that is probably hard for people raised in typical families to relate to.
She’s also related stories to me where she was shocked to find out that other people thought she was being rude–for not sharing a birthday treat, for example. These were instances where she simply didn’t think about what the right thing to do in that situation was. More than one person has attributed these faux pas to her being an only child, but I think it has more to do with my AS than her lack of siblings.
So you can see where being an aspie mom is going to result in your kids picking up some socially unacceptable habits, no matter how hard you try or how socially adept they seem to be.
Having an NT partner or spouse can go a long way toward helping you “mind the gap” when it comes to parenting. My husband is everything I’m not when it comes to social skills. He’s naturally compassionate, outgoing, empathetic, and confident. He can walk into a room full of strangers and strike up a conversation with anyone. People instantly love him. When it comes to our daughter’s social skills, I give him 100% of the credit. He modeled behaviors for her that don’t come naturally to me and that I’ve never learned to fake well.
As parents, we haven’t always seen eye-to-eye. There were times when he thought I was being too cold-hearted and there times when I thought he was being too sentimental. We’ve had to compromise on some issues and agree to disagree on others. We’ve both made mistakes. But we’ve also come to realize that we have our own strengths.
When Jess needs sympathy or relationship advice, she usually talks to her dad. When she needs help filling out forms her new job or fixing her computer, she calls me. She intuitively worked out what we can each give her as parents long before any of us knew what Asperger’s was.
That’s the thing about moms with Asperger’s and their kids: they know how to adapt.
This is the fifth in a series of posts about being a mom with Asperger’s.
As adolescence drags on–yes, some days it feels like it will never end–you may run into some serious challenges. The child who thought you were the coolest mom on Earth suddenly thinks you’re a moron. She doesn’t miss a chance to remind you that you can’t do anything right. That you know nothing. That you’re uncool and out of touch.
These words–and worse, the way they’re carelessly hurled at you–may hurt, but don’t panic. Teenagers all over town are saying the exact same thing to their NT moms and dads. Congratulate yourself on being a perfectly normal parent.
But the wild mood swings, sarcasm, unpredictability and sometimes downright meanness of teeangers can be especially hard on aspie moms. You may not be the most confident mom. Sarcasm, irony and biting humor might go right over your head, making you feel dumber than a box of rocks as your teen patiently explains the joke. And if you’ve shared your diagnosis, don’t be surprised if your teen decides at some point to use that against you. Teenagers are masters of dirty fighting. If it wasn’t your AS, it would be some other vulnerability, so again, you’re no different from the other moms.
Just like when you had that squalling little newborn, this is the time to call in reinforcements. At times you may need to turn over a challenging aspect of parenting to your child’s father, a grandparent or another safe supportive adult in your child’s life.
Don’t be afraid to ask for help if you feel like you’re in over your head. Teenagers can find themselves with adult-sized problems and because of our issues with executive function, we aspies may not always be the best source of guidance when a major crisis occurs. As a parent, you want the best possible outcome for your child, but as an aspie, you may not always be able to work out how to help him get there.
And for everything–big and small–that AS causes you to struggle with as a parent, I guarantee there’s something else that AS will make you amazing at. Your teenager will scoff at your poor fashion sense, but you may be the only one in the family cool-headed enough to teach her to drive without getting into a shouting match at every rolling stop and crooked parking job. And those research skills you’ve developed pursuing your special interests will come handy when it’s time to find the right college (or a good defense attorney).
My daughter’s friends found it amusing that I would spend hours trying to master the Playstation skateboarding tricks that they taught me or that I didn’t care if they wrote all over the wallpaper in her bedroom. More than once I heard the words “your mom is cool” whispered as I left the room.
Still, it wasn’t always easy having kids, and later teenagers, in the house, especially if the visits were unplanned or didn’t have a defined end to them. Even if you’re okay with the noise and mess that teenagers bring into your home, you may find the uncertain nature of their visits hard to handle. I spent a lot of evenings on edge because of the general anxiety caused by having extra people in the house, but I learned to put up with as much as I could, because I knew it was important for Jess to be able to invite friends over and have a relatively normal social life.
If your teen is sympathetic, it may help to sit down with him and discuss why certain ground rules are important to you. For example, if you need a quiet, safe place to escape to, it may be important for you to not have anyone upstairs where you can hear them when you retreat to the sanctuary of your bedroom. Perhaps you need the kids to clean up their messes or not cook foods with strong smells. Visits may be more tolerable if your teen limits her guests to just a couple and respects your need for the visit to end by a specified time.
As the parent, you still have a lot of control over what happens in your own house, even as your children approach adulthood. While asking your teen to make accommodations for your AS might mean that the rules at your house are stricter or stranger than those at her friends’ houses, those rules might be the difference between you being able to enjoy having your teen’s friends in the house or dreading it.
This is the fourth in a series of posts about being a mom with Asperger’s.
If your middle school years were anything like mine, you may find yourself dreading them on behalf of your child. Middle school is an awkward time, at best. For many adult aspies, it was the time when our differences started to become very obvious to ourselves and worse, to our peers.
If your child isn’t an aspie (or even if she is), she might have a much easier time of middle school than you did. Try to be neutral about what she can expect as she prepares to make that transition and don’t be surprised if your neurotypical kid is more successful than you were.
Even if your son or daughter suffers only the usual trials of puberty and adolescence, you should be prepared for how the milestones during these years might affect you. It’s possible that your child’s first day of middle school might go great for him but end up triggering an anxiety-induced meltdown for you. Your daughter’s first school dance, big game or sleepover party may bring up memories of your own early adolescence that you’d rather forget.
When I felt this happening, I tried to remember that my daughter was a very different child than I had been. She had her own adolescent anxieties and the last thing she needed was for me to impose my own issues on her. When a crisis arose, I did my best to listen and try to understand what she was facing. This is a big challenge for aspie moms. First of all, we tend to assume that everyone thinks like we do. Empathy is one of the hardest NT qualities to “fake.” We also have a tendency to want to fix stuff when often what our kids needs in a crisis is compassion, understanding and reassurance. And love.
If you find that empathizing is a challenge, practice listening quietly. Then ask “how can I help?” or “is there something I can do that would make you feel better?”
If you have the benefit of a diagnosis, consider sharing that with your adolescent child. Disclosure is a complicated subject and each family handles it differently.
Most experts agree that a middle school age child is old enough to understand the basics of what AS is and how it makes you different from the average mom. Middle schoolers are also old enough to be asked to make simple accommodations, like telling you as concretely as possible what they need or want from you if you’re having trouble figuring it out. Of course this isn’t ideal–at times your child may protest that you’re the mom and you just know this stuff.
There are nuances to social interaction that are lost on aspies and one of them is the idea that knowing what someone is feeling suggests a higher level of caring than having to be told. This is a good opportunity to remind your child that you do care about him and that’s why you’re asking for some extra help in understanding what he needs or wants from you. Also, try to remember that all parents struggle when it comes to figuring out their adolescent children.
The middle school years also bring intense peer pressure. Being raised by an aspie mom seemed to inoculate my daughter against peer pressure to some degree. I’ve always been obliviously, even proudly, different from my peers. Peer pressure doesn’t have a lot of effect when you’re used to being on the outside looking in at your peer group. While this wasn’t something we ever talked about, I think my attitude rubbed off on Jess in positive ways. She’s always been very individualistic and even today she takes the view that if people don’t like her for who she is then it’s their loss.
This is the third in a series of posts about being a mom with Asperger’s.
As difficult as I found being the mom of a newborn, I really enjoyed being the mom of a toddler. Suddenly this demanding little creature was starting to walk and talk and explore the world around her. She was still demanding and unpredictable and messy, but she was also lots of fun.
Aspies are blessed with a childlike sense of wonder and innocence that never really goes away. Discovering the world all over again alongside your child is an incredible experience. And when your little boy or girl develops a fascination with butterflies or dump trucks, you can put your aspie tendencies to work: visits to the library, field trips to construction sites, collecting things!
As an aspie, you’ve already mastered one of the keys to parenting a toddler: routine. I’m betting you’ll find nothing wrong with reading Goodnight Moon every night before bed, six weeks running. If your toddler insists on watching the same episode of Blue’s Clues three times in a row, you’re not gonna be the mom who tells him how great it would be to watch something new once in awhile. Your son has to have one special toy with him everywhere he goes or your daughter wants to wear the same sundress every day of the summer? Makes perfect sense to me.
When your two year old starts asking “why?” in response to everything, your natural aspie response will be to explain why the wind blows or why dogs bark. Your toddler will not only end up with vast amounts of esoteric knowledge, but she’ll learn that asking “why?” is a good thing.
Socializing Your Toddler (and maybe yourself)
On the downside, much of your toddler’s social life may depend on your own ability to socialize. Toddlers meet and play with other toddlers at playgroups, the park, and other “mom & me” events. If your inclination is to avoid social situations, you may find the neighborhood “mom & me” playgroup unappealing. I certainly did. But I also knew that my daughter needed to play with other toddlers. She wasn’t in daycare, so until she was old enough for preschool, it was up to me to make that happen.
So off we went to learn how to finger paint and make macaroni necklaces.
The funny thing about these playgroups is that the moms are there as much to make friends for themselves as they are to socialize their children. This can be a great way for you to make friends around a shared interest (your toddlers!) but it’s not required. If the idea of spending a few hours at someone’s house while your kids play makes you uncomfortable, it’s fine to say thank you but you’re rather busy outside of playgroup.
I accepted exactly one play date invitation from another mom. It wasn’t a disaster, exactly, but it was a classic case of ‘wrong planet’ syndrome. The other mom and I had little in common and I didn’t have the social skills to bridge the gap. Looking back, I realize that we could have spent the hour talking about our toddlers. Faced with this situation now, I would have used the drive to her house thinking up suitable small talk questions. I also know now that “yes” and “no” are conversation killers, even when they’re accurate answers. When she asked me if I liked the playgroup, she didn’t want a literal answer, she was trying to elicit information to continue the conversation. A more suitable answer would have been something like, “Jess really enjoys storytime. Which activities does Peter like best?”
Jess had a great time playing with her new friend and I toughed it out for her, but that was the first and last playdate that required my attendance. Because I wasn’t armed with even the rudimentary social skills that I’ve since developed, I struggled to connect with someone who was reaching out to me and missed the chance at making a friend. Instead I came away thinking that there was something wrong with me and decided that it would be safer to decline future playdates rather than suffer through the kind of self-doubt I felt for days afterward.
Looking back on times like this, it’s easy to regret not knowing about my AS. It’s easy to say that it would all have been different if only I’d known this or done that. But I’m not sure it would have been that different. Today, if I was the mom of a toddler and another mom asked us on a playdate, I might be more likely to accept than I was twenty years ago, but I don’t think I’d necessarily enjoy it the same way a typical mom would. And I’m okay with that now.
Out Into the World
As your child enters the preschool and early elementary school years, she’ll be old enough to go on playdates by herself. You may find this to be a great relief. I certainly did. Jess was good at making friends. Seeing her develop her own social network was exciting.
I’d never been good at making friends, but she seemed to have some sort of magic natural instinct for socializing. Maybe that’s just her personality or maybe she was compensating for my deficits. While the other kindergartners’ moms were arranging playdates for their kids, Jess was pretty much on her own. If she didn’t go out and find some kids to invite over after school, she wasn’t going to have much of a social life. But she quickly made friends and that paved the way for the years ahead.
And with friends came all sorts of new questions. There’s a lot of unfiltered knowledge floating around out there on school buses and playgrounds. As an aspie, you may be less shocked than the average mom by some of the questions your youngster comes home with. You also may be able to answer a lot of them without having to use your Google-fu.
As a result, your child will not only feel comfortable coming to you with questions, but you may find that your natural tendency toward bluntness combined with a higher than average level of emotional detachment actually creates a very open relationship. This tends to result in your child being willing to ask you anything or tell you everything. By the time she gets to high school, you’ll realize that in some cases, 90% of everything is more than enough.
This is the second in a series of posts about being a mom with Asperger’s–a combination of reflections on how my AS affected my parenting abilities and some advice that I wish someone has given me when I was struggling to make sense of being an unconventional mom. Hopefully some of what I learned the hard way will be useful to other moms in the same situation.
I know I haven’t been a perfect mother but I also know that the perfect mother doesn’t exist. As moms, we do the best we can under often challenging circumstances. We each have our individual strengths and weaknesses as parents. But aspie parents have some unique strengths and weaknesses.
Everything from issues with sensory overload to problems with social interaction can affect our ability to parent effectively or even competently. In his starkly honest assessment of aspie parents, Dr. Tony Attwood lists some of the many challenges a family may face when one parent has Asperger’s: “the imposition of inflexible routines and expectations . . . the intolerance of noise, mess and any intrusion into the parent’s solitary activities, the perceived invasion of the home by the children’s friends, and a black and white analysis of people.”
These potential challenges may begin to emerge during pregnancy and quickly intensify with the arrival of the baby.
Babies are stressful. They’re unpredictable. They’re messy. They’re demanding. They don’t care if mom is sleep-deprived or suffering from sensory overload or finds breastfeeding painful or needs a couple of hours of alone time to regroup. When you throw in postpartum hormonal fluctuations and the challenges of Asperger’s, it’s no surprise that the result can be epic meltdowns more fit for a toddler than a new mother.
When Jess was a baby, there were days when I felt like I was going to lose my mind if she didn’t stop crying. I remember one day in particular when I found myself standing in the dining room, sobbing uncontrollablly and repeatedly banging my head against the wall. If you’ve ever seen an autistic child have a meltdown, it probably looked something like this. I can only imagine how terrifying this must have been for my husband–watching the mother of his child regress to that point.
But instead of losing his temper or fleeing, he was there to rescue me before I could slip too far into that abyss. He kept me tethered to reality in a concrete way that allowed me to stay connected to Jess when my natural instinct was to withdraw.
Some Tips for New Aspie Moms
One of the keys to surviving the first months of motherhood as an aspie mom is support. All new moms need time to themselves to regroup, but for aspie moms this is especially important.
Honestly, there may be times when you feel like you can’t stand to be around your baby. He won’t stop crying or he won’t settle down for a much anticipated nap or he’s in the mood to play when you’re exhausted. Don’t feel guilty. Needing a timeout doesn’t make you a bad mother.
It’s okay–healthy, in fact–to ask for help from a partner, relative or babysitter so you can take a short break. And if getting an hour to yourself means preventing a meltdown, that’s going to make you a better mom in the long run.
If you find your anxiety level rising at a time when you aren’t able to immediately call on one of the supportive people in your life, it may help to have some strategies you can draw on to de-escalate your stress. Many of things that babies and toddlers find calming may also be soothing for moms with Asperger’s. Here are a few options to consider:
A rocking chair: Lots of adult aspies still find rocking to be soothing and when you’re doing it with a baby in a rocking chair, you’ll find that no one looks at you funny. I had two rocking chairs as a kid and a comfy rocker was one the first things I put on my wish list as a mom-to-be.
Music: Singing to your baby, dancing around the living room with your toddler or just enjoying a favorite song together can all be soothing. For a few months as an infant, the only thing that put my daughter to sleep at night was U2’s Joshua Tree album, played at what was probably an inappropriately loud volume.
Water: Many aspies say that water is calming. If you have access to a swimming pool, you and your child might enjoy spending time in the water together. Once your toddler is old enough, you may find that she enjoys playing in the tub while you soak in a warm bath.
Pets: A dog or cat is often high on the list of expert recommendations for adult aspies. Petting, cuddling or playing quietly with the family pet can be a way to spend time with your child while you de-escalate.
Walking: If you have a quiet place to walk, you may find that exercise combined with fresh air and sunshine is a good way to head off a potential meltdown for you and an instant sleep-inducer for your little one.
Driving: The same goes for a drive along quiet roads. I remember evenings when my husband and I drove around with Jess in the back seat because it seemed like the only way to get an hour of quiet time.
Of course, there’s the toddler who screams the minute you put him in his car seat and the aspie mom who finds driving stressful rather than relaxing. Not all of the strategies that worked for me will work from everyone. Hopefully this list will be a jumping off point for you when it comes to finding “rescue” activities that you can share with your child.
This is the first in a series about being a mom with Asperger’s Syndrome–a combination of reflections on how Asperger’s affected my parenting experience and advice that I wish someone has given me as I was struggled to make sense of being an unconventional mom. Hopefully some of what I learned along the way will be useful to other moms (or dads) with Asperger’s.
If you’re the mother of a child with Asperger’s syndrome, you can find parenting advice to help you navigate every stage of your child’s life.
If you’re a mother with Asperger’s syndrome? Well, good luck with that.
By the time I discovered that I have Asperger’s, I was already the mother of an adult daughter–a fairly well-adjusted, successful adult daughter. Ha! I thought smugly. I might be defective but I’d raised a perfectly normal child.*
When I told my daughter Jess that I have Asperger’s, she laughed it off at first, like maybe I just needed to be talked out of this crazy idea that there was something wrong with me. I’d always been different from other moms. We both knew that. But the idea that I might be autistic was, understandably, a lot to process.
As I explained more about what AS is and described some of the common aspie traits, she started coming up with specific examples of times when I’d done something particularly autistic. Some were funny, others less so.
The more we talked about it, the more relieved she sounded. An AS diagnosis can explain a lot of puzzling behavior, for both the aspie and the people closest to her.
As one point in the conversation, she said, “But you’re so smart!”
Armed with the reading I’d done, I explained the gap between intellectual intelligence and emotional intelligence that a lot of us with AS experience.
She was quiet for a moment. I’m sure that among other things she was puzzled over why I was so excited to be telling her that I have a developmental disorder. It doesn’t sound like a cause for celebration, but I was still in the early flush of discovery. Suddenly so much of my life made sense. I felt like someone had finally given me the user’s manual to my brain.
I hadn’t yet realized how little I knew about AS or myself. I hadn’t yet realized that the owner’s manual was missing a few key pages.
The next question Jess asked made that clear. “So, wait, does that mean you don’t have feelings?”
When a stranger or acquaintance asks this, it’s easy to attribute it to ignorance. One of the most common misconceptions about people with AS is that they’re cold and emotionless. But when your own child asks you if you have feelings, well, that’s one of those times when the reality of AS hits and hits hard.
That’s when twenty-four years of not saying “I love you”–twenty-four years of struggling to express my feelings to my own child–crystallized into one perfect moment of regret, of wishing I’d known all along that there was a reason for how difficult I find it to express what I’m feeling. Because the feelings are there. They may not be quite what the typical mom feels, but I’m absolutely certain that I love my daughter. And I want her to be absolutely certain too.
*While I would phrase this differently now (substituting different words for “normal” and “defective”) I chose not to revise my original thoughts because they reflect how I honestly felt in those early moments, when I was still learning about Asperger’s Syndrome.