Tag Archives: aspie and female

Diagnosis

Do We Need a Female Diagnostic Model for Autism?

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I’m sure you can guess what my answer to that question is. My post this month at Autism Women’s Network, Understanding the Gender Gap: Autistic Women and Girls, outlines some key ways in which autistic girls and women often don’t fit the traditional diagnostic models for autism and Asperger’s syndrome. In part, this is because the traditional models were developed primarily by observing autistic boys.

For anyone who reads the article, I have a few questions. If you identify as female, do you think the traits I listed in the article fit you? Do you think including traits like that in the diagnostic model would make it easier for someone like yourself to be diagnosed? If you identify as male (or not female), do you feel like any of the traits also fit you?

I’m asking that last question because it also occurred to me that part of the problem with applying the current diagnostic model  to adult women is that it was developed based on autistic children. When I started researching Asperger’s syndrome, I kept coming across information aimed at screening children and had trouble seeing myself in the most commonly mentioned traits. By the time we reach adulthood, we’ve often made a lot of adaptations that conceal our autistic traits. So I suspect that some of the social traits in particular might also apply to many adults, regardless of gender. I’m also curious what other traits you think should be part of the diagnostic criteria or how the diagnostic criteria could be modified to be more inclusive.

girl2

And finally, I’m taking next week off to go visit my daughter. Enjoy the rest of November and if you celebrate Thanksgiving, have a great one!

Diagnosis

Diagnosis Barriers for Autistic Women and Girls

31 Comments

I’m very excited to announce that I’ve been invited to contribute monthly articles to the Autism Women’s Network. My first piece, Hiding in Plain Sight: Diagnosis Barriers for Autistic Women and Girls, was posted today.

Thank you to everyone who shared their stories last month. It turned out that your answers to my questions were more than I could possibly use in one article. I learned so much from reading your stories. Even though I wasn’t able to quote everyone who participated, what you shared helped me to understand the issues better and I’m grateful for your insight. It’s also nice to be writing about someone other than myself for a change!

I’m in the process of developing two more articles based on the survey questions/responses so there’s a good chance that I’ll eventually include quotes from everyone who shared their thoughts.

I guess that’s it for today. Shortest post ever . . .

Monday Morning Musings

Monday Morning Musings (6/10)

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E-book Released

I Think I Might Be Autistic: A Guide to Autism Spectrum Disorder Diagnosis and Self-Discovery for Adults went live yesterday at Amazon.com. If you have a Prime membership and a Kindle, you can borrow it for free.

Thank you to everyone who helped me refine the cover art last week and cheered me on. That last mile was more difficult than I anticipated.  Now I need to do some promotion so I can get my giveaway idea off the ground. Strangely, I’m really good at promoting other people’s stuff and am probably going to be terrible at promoting my own.

Another Adult ASD Research Study

This week, I received information on two more research studies. If you live to fill out questionnaires, are over 18 and have an ASD diagnosis, read on. Both studies are by being conducted by Kathrine Birt as part of her Doctoral research at Deakin University in Australia. The goal of the studies is to better understand the impact of Autism Spectrum Disorder (ASD) diagnoses on intimate couple relationship development (in adulthood).

The first is a questionnaire that takes about 20 minutes to complete. To participate, you need to be over 18 and have an ASD diagnosis. You don’t need to currently be in a relationship to be eligible, but if you are in a relationship, you’ll be presented with additional and more detailed questions. (I’ve completed both questionnaires, because I like to be sure I know what I’m sharing information about.) More info about the first study is here.

Study number 2 is for adults with ASD and their intimate partners. Both partners must be over 18 and one must have an ASD diagnosis. The questionnaire for the individual with ASD takes about 30 minutes to complete. After completion, a link is provided for a second (10-15 minute) questionnaire to be completed by that person’s partner. More information about study #2 is here.

Note that for both studies, clicking the “continue to study” button on the first page takes you to a second page with more details about things like the type of information collected, how the information will be used and privacy protections.

Not Quite a Hippity Hop

This is my new exercise ball:

ball

I’ve been using the exercise ball at the gym after my twice-a-week workouts and decided I needed one at home. It’s a fun sensory toy and a good way to stretch and release the tension that I seem to perpetually carry in my upper back and shoulders. Once, a yoga instructor who told me that I carry my negative emotions between my shoulder blades. My slightly less interesting explanation is that I unconsciously put myself in awkward postures that create tension in my body, maybe as a kind of stim. The exercise ball is a good way to consciously check in with my muscles and release the tension so it doesn’t build up into nagging injuries.

Sadly, it doesn’t have a handle so I can’t hop around the living room on it.

Some Girl Stuff

Last week Asparagus Girl wrote a blog post about perimenopause and Asperger’s. Not much has been written about menopause by women on the spectrum so I was excited to see her tackling the subject. The post mainly focuses on mood swings, which should be called mood slingshots or mood boomerangs or something more violent and dangerous and in line with reality.Think PMS on steroids.

I’ve noticed an uptick in meltdowns over the last few years as my hormones become more wacky. I’m definitely more irritable, too, and sometimes I find myself in a strange, unpleasant moods for no obvious reason. There’s other stuff–some that’s TMI even for me–and taken together all of these changes have me wondering if women on the spectrum experience perimenopause differently from typical women. Not necessarily if we have worse symptoms, but if our funky brain wiring creates unexpected side effects of the hormone fluctuations that precede menopause.

Predictably, this isn’t any substantial research on autism and menopause. Like a lot of aspects of being an autistic adult, I’m finding the best source of information is other women who are going through or have done through the process already.

Acceptance

The Seductive Illusion of Normal

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Ninety-eight percent of the time I’m good with being autistic. I was going to say “fine with being autistic” or “okay with being autistic” but I don’t want to use tepid adjectives. I really truly feel good about myself most of the time.

Then there’s the other two percent. The hard, ugly, maybe I shouldn’t be saying this but I’m wishing for normal two percent.

When I was four or five years old, I wished I was a boy. Boys got to roughhouse and play cool sports and go shirtless in the summer.

I tried the shirtless thing. It landed me in trouble, though as far as I could tell I looked no different from the shirtless boys in the neighborhood. Later, I hung around the pick-up games and sometimes the older kids let me play. I learned to throw a tight spiral and catch a long pass no matter how bad it made my ice-cold hands sting afterward. Eventually, I learned to fight.

The desire to be a boy faded.

In third grade, I wished my curly hair was straight like Marsha Brady’s. All of the cool older girls-and by older I was thinking fifth graders–had straight hair. Somehow, it seemed like straight hair would magically make me popular.

A couple of years later “Farrah Fawcett hair” was all the rage, and if I spent enough time with my mother’s blow dryer and roller brush, I could feather my hair perfectly. It didn’t make me popular but it cured me of the illusion that better hair was the key to eternal happiness.

I’ve wished for other things over the years. To be taller: more clothing choices. To be more coordinated: I didn’t make the cut for high school sports. To be more feminine: I’m not sure why, exactly.

hearts

As I’ve gotten older, the wishes have become more amorphous.

Now I find myself trying to sort out where this wishing to be normal falls. Is it like wishing for Marsha Brady hair–that one elusive change that will make me magically popular? Or is it like wishing to be a boy so I can play shirtless in the summer?

Surprisingly, I think it’s more of the latter–more of a practical wish. You see, when I most find myself wishing to be normal is when I see the people around me struggling with the–well, for lack of a better term, let’s call it the side effects of my autism.

I don’t live in a vacuum. I say and do stuff. People around me are affected by it. Even though they know I struggle with certain things–they know this logically. That doesn’t prevent them from being affected by my words or actions or lack of words or actions.

This is when the wish to be normal sneaks up and grabs me.

I’m using normal and not neurotypical here for a reason. Normal is an illusion and I know it’s the illusion that I’m wishing for at these times. I’m not wishing for a different neurology so much as a fantasy version of life.

It’s easy to be seduced by the idea that being normal would solve everything, that it would make the lives of the people around me easier. But, of course it wouldn’t. We’d have some other problems instead, because life is like that.

And still it’s there, born out of frustration and insecurity, of a sense of never quite being good enough or right enough or just plain enough.

Maybe it’s a self-esteem issue. Mine has never been especially good. I seesaw between overconfidence and underconfidence, with no idea where the sweet spot in-between lies. Does anyone truly know this? I’m not sure.

I’m not sure it even matters. This will all pass. It always does.

At some point, I see the illusion for what it is, and the desire fades.

It always has.

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This post is also available in Portuguese

Emotions, Health

Anatomy of a Meltdown

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Last weekend, I had a meltdown and the next morning I tried to capture some scattered impressions of it to share. I’ve purposely left this raw and unedited, the way it unspooled in my head, to give you a feel for how chaotic a meltdown can be. While meltdowns are different for everyone, this is how I experience them.

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A meltdown can go one of two ways: explosion | implosion.

Explosion

Everything flies outward. Words. Fists. Objects.

Implosion

Have you ever seen a building implode? The charges go off somewhere deep inside and for a moment you swear nothing is going to happen and then seconds later–rubble and dust and a big gaping hole in the ground.

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It feels like a rubber band pulled to the snapping point.

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What I don’t want to hear:

It’s okay.
(It’s not.)
You need to pull yourself together.
(I will, when I’m ready.)
Everything will be fine.
(I know.)

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I’m not looking at you because I don’t want to see you seeing me this way.

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It feels like the end of the world. It feels like nothing will ever be right again.

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What I need:

  1. Space
  2. Time
  3. Absence of judgment

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The headbanging impulse is intermittent but strong. I stave it off as best I can because:
a) my brain is not an infinitely renewable resource
b) headbanging scares other people

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Meltdowns are necessary. Cleansing. An emotional purge. A neurological reboot.

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Please don’t ask me if I want to talk about it, because:
a) there’s nothing to talk about
b) I don’t have the resources necessary for talking

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meltdowns

Evolution of meltdowns over a lifetime:

For my first 12 years, I internalize well. So well that I end up in doctor’s offices and emergency rooms with mysterious headaches, high fevers, stiff necks and stomach bugs. At various times I’m told that I don’t have meningitis, migraines, appendicitis. What I do have . . . that’s never conclusively decided. Things come and go, seemingly without rhyme or reason.

Puberty hits. Hormone surges make internalizing impossible. I slam doors, sob uncontrollably at the slightest provocation, storm out of the house, crank up my stereo. My anger becomes explosive. I pinball between implosions and explosions.

Early twenties, into my thirties, the explosions become rare but the implosions grow worse. I can’t get through an emotionally charged conversation with my husband–let alone a fight–without imploding. The headbanging impulse appears. Muteness takes center stage.

My forties–I can count the explosions on one hand. The implosions are down to a couple a year at most. As the meltdowns have lessened, the shutdowns have increased. This is lateral movement, not progress.

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It feels like my whole body is thrumming, humming, singing, quivering. A rail just before the train arrives. A plucked string. A live wire throwing off electricity, charging the night air.

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I’m 90% successful at staving off headbanging. The thing is: when that impulse arises, headbanging feels good. It’s . . . fulfilling?

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Will comforting me help?
No.
Do I want the meltdown to be over?
Yes, but not prematurely.
Would I like a hug?
No.
Am I in danger?
No. I’m conscious of the boundary between stimming and serious self-harm.
Do I want company?
If you’re okay with sitting silently beside me.
Can you do anything to make me feel better?
Probably not. But you can avoid doing the things that will make it worse.

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Muteness: Complex speech feels impossible. There is an intense pressure in my head, suppressing the initiation of speech, suppressing the formation of language.

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My meltdowns aren’t so much about triggers as thresholds. There is a tipping point. A mental red zone. Once I cross into that zone, there’s no going back.

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It feels like dropping a watermelon on the pavement on a hot summer day. The bobble, the slip, the momentary suspension of time just before the hard rind ruptures and spills its fruit, sad and messy, suddenly unpalatable. And no one knows whether to clean it up or just walk around it.

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A shutdown is a meltdown that never reached threshold level. Either my threshold is rising or I’m becoming less sensitive to the precursors as I age.

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Meltdowns are embarrassing. A total loss of control. Humiliating. They make me feel like a child. They are raw, unfiltered exposure.

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Panic. Helplessness. Fear.

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Imagine running as far as you can, as fast as you can. When you stop, that feeling–the utter relief, the exhaustion, the desperate need for air, the way you gulp it in, your whole body focused on expanding and contracting your lungs–that’s what crying feels like during a meltdown.

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Please don’t touch me. Don’t try to pick me up, move me, or get me to change position. Whatever position I’ve ended up in is one that’s making me feel safe. If it makes you uncomfortable to see me curled up in a ball on the floor, you should move–remove yourself from the situation.

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There is emotion at the starting line, but a meltdown is a physical phenomenon: The racing heart. The shivering. The uncontrollable sobs. The urge to curl up and disappear. The headbanging. The need to hide. The craving for deep pressure. The feeling of paralysis in my tongue and throat. The cold sweat.

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The physical cascade needs to run its course. Interrupt and it’ll just start all over again a few minutes later. Patience, patience.

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What I need when I’m winding down:

  • deep pressure
  • quiet
  • understanding
  • to pretend it never happened

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The recovery period is unstable.

Exhaustion comes first. Mixed with anger, at myself mostly, for losing control.

My filters don’t come back online right away. Unless you can handle an unfiltered aspie, proceed with caution.

Finally, there is euphoria. A wide open feeling of lightness, of soaring, of calm.

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Motherhood

Asperger’s and Motherhood (Part 6)

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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.

Motherhood

Asperger’s and Motherhood (Part 5)

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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.

Next in the series: Am I contagious?

Motherhood

Asperger’s and Motherhood (Part 4)

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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.

Next in the series: Lurching Toward Adulthood

Motherhood

Asperger’s and Motherhood (Part 3)

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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.

Jess at 17 months

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.

Next in the series: How am I supposed to get this kid through middle school when I barely survived it myself?

Motherhood

Asperger’s and Motherhood (Part 2)

34 Comments

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.

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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.

Jess at 7 months

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.

Next in the series: The joys and terrors of toddlerhood