Tag Archives: coping strategies

Autistic Motherhood: The Social Dimension

The first article in a 3-part series on motherhood is out today at Autism Women’s Network:  Motherhood: Autistic Parenting

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.

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Executive Function Primer (Part 3)

This is part 3 in a series about executive function. It looks at the regulation functions that are related to initiating, monitoring and inhibiting our actions and thoughts. Looking for the other parts? Part 1 |  Part 2

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The second category of executive function components, regulation, includes cognitive flexibility and the initiation, monitoring and inhibition of actions. These executive functions are primarily related to how we interact with our environment.

Inhibition

When you think of inhibition, you probably think of the common usage which means a feeling of self-conscious restraint. The inhibition related to executive function is somewhat different. It refers to our ability to block or suppress a thought or action, either consciously or subconsciously.

Biologically, inhibition takes place in three different realms: motor inhibition, cognitive inhibition and emotional inhibition. It’s quite possible that you’ve never even thought about inhibition in this way and yet it has a huge impact on your daily life.

Our brains are constantly inhibiting–or failing to inhibit–thoughts and actions. To focus attention on one thing, we have to inhibit countless other distracting inputs (remember the top-down and bottom-up attention systems as well as selective attention). To call up a desired piece of information from memory, we have to inhibit the retrieval of millions of irrelevant bits of information. To change a behavior we have to inhibit habitual actions. And sometimes, to get through a difficult situation, we have to inhibit our emotional reactions (or, if you’re alexithymic, consider the opposite case–your emotions are involuntarily inhibited, perhaps in part because of dysfunctional inhibition).

When you think about it, a lot of autistic traits could be traced back to poor inhibition. Infodumping, even when we know the other person has lost interest. Catastrophizing long past the point where it’s logical. Blurting out what we’re thinking only to regret it a split second later. Spending the day lost in a special interest when we really did mean to get all those chores done. Even stimming could be viewed as poor motor inhibition. What if all people have a natural tendency to stim, but neurotypical people are just better at naturally inhibiting their motor function?

Extreme difficulty with inhibition can lead to impulsivity, which is more characteristic of ADHD than autism, but can be present in both. Often, impulsivity is mistaken for problem behavior and met with punishment as a means to extinguish the problem. Like other aspects of dysfunctional EF, poor inhibition isn’t something that can be fixed by simply trying harder or having more self-discipline. Support can help. Accommodations can help. Understanding can help. Practice can help. Punishment and shaming only hurt.  Continue reading Executive Function Primer (Part 3)

Autistic Regression and Fluid Adaptation

In my last post, I talked about my recent language difficulties and mentioned autistic regression. Sometimes called autistic burnout, autistic regression is a loss of skills or coping mechanisms.

Regression can refer to a specific set of skills or abilities:

  • progressively losing the ability to speak

  • deteriorating executive function

  • reduced memory capacity

  • loss of self-care capabilities

  • loss of social skills

  • reduced ability to tolerate sensory or social overload

It can also refer to a general loss of the ability to cope with life or to accomplish all of the necessary daily tasks of living.

Sometimes the loss is temporary–a period of a few weeks or months–after which a person regains the lost abilities. Other times the deterioration in skills or coping mechanisms takes place over years. It may be come permanent or semi-permanent, with skills being regained but not to the level at which they previously existed.

Often a period of autistic regression begins during or after puberty or during the transition to adulthood (late teens to early twenties). Mid-life is also a common time for autistic people to experience burnout or regression. In fact, many people (including me) list a noticeable change in their ability to cope with daily life as one of the reasons for seeking a diagnosis. However, autistic regression can happen at any age and is often preceded by a major life change or a period of increased stress.  Continue reading Autistic Regression and Fluid Adaptation

Rules to Live By

Back when I first started reading about ASD, I came across David Finch’s “Journal of Best Practices.” If you haven’t read it, all you need to know is that after being diagnosed with Asperger’s he started keeping a journal filled with social rules (best practices) that he wanted to remember.

What a great idea, I thought. I should do that!

Yeah. It turns out that I’m not anything like David Finch. He went about cataloging the rules he was learning with a humor and fanaticism that I just don’t have. I wrote down the rules I was learning for approximately . . . two weeks. Then I got distracted by some other bright shiny thing I can’t remember and abandoned the file.

As I was cleaning out my Google docs folder recently, I came across the rules I’d written down. And I have no idea what the point was, because unlike Finch, who actually set about following the rules he’d learned, all I did was write snarky explanations to justify breaking the rules.

That was a year ago, so I thought it might be fun to revisit them. For each, I’ve listed the rule, my response from a year ago and my current response.  Continue reading Rules to Live By

Asking for Help

I’ve never been good at asking for help. A few memorable examples to help you understand how nonexistent my “asking for help” skills were as a kid:

When I was five, I fell out of a tree that I was climbing and landed on my back. As you can imagine, I completely knocked the wind out of myself. Not being able to breathe was scary. Falling out of the tree hurt. Did I run to my parents in tears, wanting to be comforted? Nope. I can still remember squatting on the garage floor, crying, trying to catch my breath.

In third grade, during small group reading time, I only brought one tissue with me to the group reading table. I had a nasty cold and quickly used up that tissue plus both shirt cuffs. So I sat there, right next to the teacher, pretending that I didn’t have snot running down my face and that I wasn’t licking it as it reached my mouth. Eventually I guess she couldn’t take it anymore. She went and got some tissues, setting the box in front of me with the admonition that I should ask next time.

In sixth grade, a boy trapped me in the coat closet and kissed me. Not a cute puppy love kind of kiss. More like a gross, smelly, pinned in the corner so hard I couldn’t breathe kind of thing. I spent the rest of the spring avoiding him. He was bigger and stronger and I was afraid of him. I never told an adult. I never asked for help in keeping myself safe from him.

All three of those memories are traumatic in their own way. I remember feeling scared and alone. I don’t remember even thinking about asking for help. For some reason, among all of the options I came up with, none of them involved going to another person to see if they could assist me in solving my problem.

help Continue reading Asking for Help

What I Want

At the end of July I embarked on a 30-day experiment, the aptly-named “What Do I Want” experiment. My intention was to report back at the end of August with a neat little of summary of what I’d learned.

Well.

Initially, I thought “what do I want?” meant learning to identify my needs and desires. That sounded intimidating. I had little idea where to begin so I began obsessing over decisionmaking. It was concrete and easy to construct rules around. It was also just scratching the surface of what I needed to be doing.

Wading deeper into the experiment, it became more difficult to separate what I want from other big questions of identity. What I am. How I act. How I think. Who I want to be.

I gradually began to realize that being autistic and alexithymic is only part of what makes “what do I want?” so hard to answer. There is a secondary element at work, an old defense mechanism. Wanting something, getting my hopes up, expressing a preference, letting desire creep in–that makes me vulnerable. To deprivation, to loss, to mockery, to pain. Not wanting feels safe. Ultimately, though, all it gets me is preemptive deprivation. There’s a lot of emptiness in not wanting.  Continue reading What I Want

Stepping Outside My Comfort Zone

I like my comfort zone. A lot.

I don’t want to break out of it or stretch it or push myself out of it. Mostly I’d like to build a blanket fort in my comfort zone and never leave. But I know that isn’t reasonable. As an adult with responsibilities, there are times when I have to step outside my comfort zone.

My approach to these times used to involve a lot of metaphorical pushing and breaking and stretching. I would power through, often with an angry determination to just get it over with. This made hard things harder, but I didn’t realize that I had a choice.

Recently–and entirely accidentally–The Scientist showed me that there’s a better way to go about getting out my comfort zone. After doing some post-game analysis of why what we did worked, here’s what I’ve come up as a framework for helping someone step out of their comfort zone in a gentle, supportive way:  Continue reading Stepping Outside My Comfort Zone

Under Control

Control. It sounds like a good thing.

Self-control. I’ve got this under control. Control yourself.

For years, I had everything under control. I swore I did. Everything from family activities to how people were allowed to feel around me. Is some small detail unplanned? I’ll plan it. Someone has a problem? I’ll fix it, whether they want me to or not. Something needs to be done? I’ll take care of it. In fact, I’ll do it myself because that’s the only way it will get done right. Because only I know what the right way is.

See, everything under control.

This should feel good. My entire universe working according to my grand plan. Only it doesn’t feel good. It’s exhausting and it drives the people around me up a wall.

It’s also an illusion.   Continue reading Under Control

Procrastination or Executive Function Fail?

There’s a spot on my kitchen floor, a little cluster of dried reddish drips. I don’t know what it is. If it’s from 3 days ago, it’s tomato sauce. If it’s been there longer . . .  who knows.

I’ve walked past it dozens of times. I look at it. It annoys me. I wonder how it got there. I wish it would go away. It doesn’t occur to me that I can make that happen.

The greasy smudgey fingerprints on the cabinet that I can only see in exactly the right light? The 8-inch long thread that’s been hanging off the bathroom rug since the last vacuuming? The dryer sheet on the laundry room floor? Same thing.

What is this? Why can I sit here and catalog all of these little annoyances yet I still do nothing about them? It’s not like fixing them would take a huge amount of time or effort.

In fact, to demonstrate how minor they are, I’ll take care of them right now.

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Done. It took me less than five minutes to wipe down the kitchen cabinets, trim the thread and toss in the trash, pick up the dryer sheet, and clean the spot off the floor. I bet it would also take only a few minutes to vacuum up the bits of dirt and grass scattered in the entryway from my running shoes.

But I’m sitting writing and not doing it, aren’t I?

Maybe later.

And this is how days go by and I keep right on walking around the mess, getting more and more annoyed by its existence yet still not doing anything about it.  Continue reading Procrastination or Executive Function Fail?

Post #100: A Hiatus and Some Thoughts on Executive Function

This is my 100th post. Yay!

Around the time I started blogging, a blogger that I was following made her 100th post and I was in awe. I wasn’t sure if I could stick with this blogging thing long enough to make it to 100. I wasn’t sure if anyone would read what I wrote or if I had enough ideas to make more than a few posts.

It turns out that I probably have enough ideas for a thousand posts. Even better, I have an amazing group of readers who I’m enjoying getting to know. I didn’t realize how interactive blogging can be. Again and again I’m humbled by the comments here, by the kind words and the trust. By your willingness to share and be open and support each other and make this journey with me.

And to those of you who read and lurk, I see you, pushing my post view count up day after day. I know you’re out there and I’m grateful. Don’t be shy about joining in the conversation if the spirit moves you.

A Change of Plans

I was going to post one more survey tomorrow before I leave for my Big Adventure, but I’ve decided to wait until I get back. My executive function has been in a downward spiral for the past week. Right now I have the EF of a squirrel.

So here’s The Plan:

  1. 100th post

  2. Put blog on hiatus

  3. Big Adventure Part 1: Go far far away

  4. Big Adventure Part 2: Come home, immediately move to new apartment

  5. Die a little

  6. Recover

  7. Post survey part 4

  8. Start writing again

I have no idea how long 5 and 6 will take so I’m not sure how long the hiatus will last. Maybe close to a month? Hopefully my Big Adventure will give me lots to write about.

I’m sorry to keep messing with the survey schedule. I know unexpected change can be frustrating.

WTF Executive Function?

My Big Adventure is looming large. A major trip followed by a move is a lot to cope with. Massive change, lack of control, uncertainty, sensory triggers, major sleep disruption, yadda, yadda, yadda. I used to think that the uneasiness and disorientation I felt before a big event was anxiety but I’m starting to think it’s actually stress-induced deterioration of my executive function.

The degree of my uneasiness is directly proportionate to how stressful I anticipate an event will be. The next few weeks are 7-9 our of 10 on my stress-o-meter. Not just an evening or a day of level 7-9 stress, but a full two weeks of it. The anticipation I’ve been feeling over the past week has given me a chance to step back and observe my reactions to extreme stress.

Here’s what I’m discovering: the closer I get to the Big Adventure, the worse my executive functioning is becoming. About 10 days ago, I started to notice that I was having trouble concentrating on work. I made myself a detailed schedule, plotting out a reasonable number of tasks each day and allowing myself five days of no complex work leading up to my trip. That helped a lot.

Then I noticed that I was having trouble staying organized. Moving and preparing to travel overseas involves a lot of planning. Random details were constantly flying around in my head, especially things I absolutely shouldn’t forget. Turning the utilities on/off. Buying dog food. Changing my address on this account and that account and some other account. Packing tampons and melatonin and my laptop cord. Picking up moving boxes at the grocery store. My passport!

Finally, I took out a notepad and wrote everything down–lists, important dates, schedules, reminders. The notepad sits on the kitchen counter and every time I think of something, no matter how trivial, I write it down.

Gradually, I started to lose interest in communicating. I’ve mostly stopped keeping up with social media, email, etc. Soon after that, I started to struggle with writing. Just getting through this fairly straight forward post is taking me forever. I keep losing track of thoughts and going down blind alleys. (There also seems to be something wonky about the tenses here, but IDK.)

I’ve been spending a lot of time this week doing stimmy, low-cognitive-demand things, like playing Temple Run, taking long walks and being silly with the dog.

I’ve been double and triple checking everything I do, especially for work. Still, I find myself making a lot of little mistakes. Putting my empty cereal bowl in the fridge instead of the dishwasher. Putting clothes in the dryer but not turning it on. Not realizing I’m wearing my shirt inside out until the end of my run.

So this feeling I get–disconnected, disoriented, unfocused, withdrawn, restless–this thing I’ve been thinking all these years was anxiety is looking more like a deterioration of my executive function. Thinking about it in that way has removed a layer of stress. It also explains why my “anxiety” symptoms only match a small subset of typical anxiety symptoms (restlessness, difficulty concentrating, becoming less social, fatigue).

Instead of worrying about it and beating myself up for not coping well and powering through it like I’ve done in the past, I’m being kind to myself. I’m making accommodations, acknowledging that I shouldn’t be doing complicated work projects right now, taking more breaks during the day, asking for help/advice where I need it, reminding myself that it’s temporary.

By not pushing myself, I feel like I’ve deescalated my stress quite a bit. I’ve also been able to avoid negative coping mechanisms like perseverating, withdrawing or being controlling. This makes for a happier marriage and a happier me.

See You on the Other Side

Assuming all goes as planned, I’ll see you in 3-4 weeks. Until then, be well.