A Shifting Sensory World

Autism, Identity, Neurodiversity, Parenting

Everyone has senses. And most people have sensory issues of some kind, to some degree. Here is your mini primer on sensory processing: you already know about sight, hearing, taste, smell, and touch. But we have many more senses than those, including our senses of pain, temperature, vibration, balance (sometimes called vestibular sense), and proprioception – which includes the ability to sense your own movements, the position of your body parts, the sort of sense of being in your body that many people take for granted.

Introverts are more likely to be sensitive than extroverts in many ways – not just emotionally, but in the ways they perceive the world. Some people have sensory processing disorders (not an official diagnosis in the DSM but these would be sensory issues that are more intense than just being “sensitive”) who are not on the autism spectrum. Autistic people have sensory issues (though this is not the only thing that points to a person being autistic, it’s a significant one) that differ in degree from the neurotypical population, and sometimes in kind (that is to say, some senses may be heightened, some under responsive, and some are just different).

When I first went to see my psychologist to find out whether it would be worth evaluating me for autism, she asked me whether I could remember times during my childhood when I struggled with or withdrew from certain activities or environments due to sensory issues. I was startled by how difficult it was for me to answer this question.

I’ve always considered myself an introspective and fairly self aware person (after all I have a dozen hand written journals from my adolescent years) but this was not something I had ever been tuned into. What I knew was then I had always found myself tipping over into what I simply called “a bad mood” for reasons that I could not explain at all. The only way I could explain this to myself was that I must simply be “a moody person.” Maybe it was because Cancer is my astrological sign – I couldn’t think of any other explanation. I never liked this about myself but there seemed to be so little I could do to change it. It’s not that I was depressed or bipolar, I was just irritable, frequently, at unpredictable (to me) times. Over the years I’ve found myself apologizing and frustrated that I could not tell a loved one why I was being so unpleasant – there was nothing really wrong that I could think of – nor could I seem to snap out of it.

I was pretty self aware as a person, but I couldn’t be fully self aware as an autistic person, because not only did I not know I was autistic, I did not even know that something called “sensory processing” existed.

Then I had a child, and when my child was a toddler I would reach out for help with this parenting issue or that, and more than one person suggested that I look into whether he might have sensory processing disorder. The funny thing was, I read website and website and even a book or two, and there was the time we brought him for an OT evaluation, and I would comb through these lists of sensory processing issues and I just kept thinking, actually that sounds more like ME than him. Huh.

I’ve only veeeerrrry slowly, over many many months, begun to connect the dots between my apparent “moods,” and the actual sensory issues that triggered them. For half my life I was terribly disconnected from my sensory needs and aversions and was just kind of barreling through life ignoring them or giving them only cursory attention, much to my detriment.

This actually is an incredibly common phenomenon, even after an autistic person realizes they are autistic and have special sensory needs. Because autistic people usually also have executive functioning difficulties (I promised before I’d write specifically about executive functioning, and I will, sometime), it can take us longer than a neurotypical person to register sensory information or discomfort. It’s common to not realize that you are hungry, cold, in pain, etc. until you are on the verge of a meltdown and finally focus on what it is that has been bothering you beneath the surface.

Image shows a closeup of points of light in blurred bokeh effect, with the words “I’ve begun to connect the dots between my apparent ‘moods’ and the actual sensory issues that triggered them.”

 * Seams. One of the things that is always on those lists of sensory issues is “bothered by seams in clothing.” I would always see that and think, no, seams don’t hurt or scratch me. As long as they are always perfectly lined up and symmetrical on my body and not bunched up or — ohhhhh.

Light touch: wind blows. I’ve always hated the wind. The way it feels on my skin, the way it ripples my clothes, yeeeuchh. In high school I wore my hair long, and when the wind would whip my hair into my eyes and my mouth or even when it just blew over my head and messed up the part in my hair, I would find myself falling into a helpless rage. Over wind. This is one of the lesser known reasons why I now wear my hair short!

* Light touch: not OCD. Also sometimes when something, say, grazes my arm just slightly, I will feel a revolting sensation in that spot for a long time afterward, but I can sometimes fix it by grazing the other arm in the same place purposely. I still feel it but the symmetrical feeling makes it less irksome. This is the sort of thing that some people incorrectly dub “OCD.” It’s not OCD, it’s a sensory issue.

NoisyMy most intense, and most challenging, sensory issue is auditory processing. It’s still hard to explain exactly how it works for me, but I guess one way to describe it is that my auditory channel takes in a LOT of information and frequently floods me with way too much. It’s sort of a fluid and ever-changing sense that I seem to be able to control very little. (An autistic friend recently told me that she can kind of “shut off” her auditory input in noisy environments, which made me feel very envious!) Sometimes I am not aware that I am overloaded by sounds until I begin to melt down (for me this looks like getting angry and bitchy – one of my “bad moods”). Sometimes I am hyperaware of sounds and it’s like a scene in a movie where the protagonist is freaking out and the audio is all loud and chaotic. Sometimes I begin to involuntarily shut down auditory input and cannot focus on what people are saying to me – sort of like when you are driving while tired and keep zoning out so you don’t remember how you got to where you are, even though you are trying to pay attention – but with listening skills. I hate white noise, like ceiling fans. I hate repetitive noises that are not perfectly synched – so a sink dripping or a person snoring is horrid, while a ticking clock is probably okay. I love loud music but music that’s just barely audible drives me bananas.

* Am I in my body? One of the weirdest, but also to me one of the coolest, sensory issues I experience is off kilter proprioception. M. Kelter writes beautifully about his proprioceptive issues (and other things – I love his writing) and he also happens to love touching walls, like me – whenever I walk down the narrow hallway in my house I run the backs of my fingertips along the wall. But enough about walls.

Proprioception is somewhat hard to explain but it’s the sense of being in your body, one with your body, feeling all of your parts, feeling your own weight and mass. It’s probably quite difficult to imagine if you don’t ever have atypical proprioception.

I can remember at least as early as my teen years, and this still happens, that I would suddenly get this uncanny feeling of looking out of my own face. I would become too aware of my own nose, and then feel like I was looking down at my body doing things, but not feel totally one hundred percent integrated with that body, very much a kid’s cartoon in which a little person is sitting inside of a robot’s head operating a walking, talking robot. But who was this “me” who was looking out of this body, and why was I in this body? It’s an unsettling mindset that I don’t like to linger in for too long, but it’s also kind of oddly pleasurable and comforting too, possibly because I have always had these experiences and they are, though strange, familiar. It’s only recently that I have realized this is related to the proprioceptive sense and the way an autistic mind can become sort of disconnected (I think Kelter uses the word “floating” a lot) from the body.

Squinting. I am a little sensitive to light, always have to wear sunglasses outside, don’t like fluorescent lights. I really dislike contrasty lighting, so a dim space with bright spotlights makes me feel very yucky. Often when I am drawing I squint in order to screen out excess information and see just the overall composition of my work. But my sight is mostly a sense that gives me pleasure.

Bitter Betty. I like foods with strong flavors, especially bitter flavors. Probably why I love coffee with no sweetener, and the hoppier the better when it comes to beer. I also like spicy stuff and salty stuff. I like complex foods that have a lot of flavors going on. Lots of people with sensory issues have the opposite preferences for very bland foods. They are not just being picky but are quite overwhelmed by food flavors (or textures).

* Air “fresheners.” I think I have a pretty sensitive sense of smell, but mostly smells don’t bother me much. Even body odor, which most people find offensive, is a fairly neutral odor to me. The smells that bother me the most are industrial-chemical smells and artificial scents, like new carpeting, rubber tires, etc. The worst are those plug-in air fresheners – when I used to be an interior painter, I couldn’t work in a house that had one plugged in. When someone comes from a house that has a lot of air freshener, I can smell it on their clothes for hours. Those types of scents give me a headache and make me feel ill. I’d rather just smell your ordinary house smells!

That time of the month. All of my sensory issues are more intense when I have PMS. That’s quite common with autistic women. The thing I notice the most is my tactile senses – being touched, how my clothes feel – are the most bothersome during that time of the month. Very annoying when you are already feeling cranky and hormonal!

I’m still in the stage of identifying my own sensory issues, almost like uncovering repressed memories, except that they are not memories of things past, but repressed feelings that I presently feel. If you have sensory issues, whether they are part of something like sensory processing disorder or autism or just being a sensitive person, I think it’s okay to be up front with them. I admit that I didn’t always feel this way and used to think that people should just “get over it,” probably because I was so used to doing the same and wouldn’t allow myself to voice my preferences.

What are your preferences, what kinds of sensory inputs do you abhor and which do you love? Drop me a comment, I’d love to know!

Self Care is a Radical Act

Autism, Identity, Parenting

Caring for myself is not self-indulgence, it is self-preservation, and that is an act of political warfare. – Audre Lorde

I came across the above quote from activist and poet Audre Lorde and felt inspired to write on the theme of self care for the month of June. Interestingly, when I searched Pinterest for the quote, hoping to find it in some already-memed form that I could instantly share, I found a lot of people had chopped off the last phrase about political warfare. Why?

I suppose the truth is a little intense for some people, but I find it exciting. Self care is an act of political warfare, it’s radical, it’s revolutionary, especially when performed by people who are culturally oppressed by messages that tell them not to value themselves. Lorde, who died in 1992, was black, she was gay, and she was a woman. She knew that “If I didn’t define myself for myself, I would be crunched into other people’s fantasies for me and eaten alive.”

Only in the last year or so have I become keenly aware of the importance of this truth. I am writing on self care this month not as someone who’s got it figured out – far from it. I am writing as someone who feels the urgency of figuring it out, or at least finding my way there.

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My first thought, my initial intuition, is that a key ingredient to self care is self-acceptance. Self-acceptance is not self-esteem. It seems to me that self-esteem is an ability to see oneself as good, smart, lovable, powerful, beautiful. Self-acceptance is at once easier and harder than all of that. Easier because it means it’s okay for you to be broken or falling-apart or lost or needy or still figuring it all out. Harder because, well, it’s hard to sit with all of that without judgment.

In “Acceptance as a Well Being Practice,” Cynthia Kim writes,

Unfortunately, no amount of practice or effort will allow me to make that leap in a single bound. Thinking of it that way, it’s easy to give up before I even get started.

What I’ve discovered over the past two years, however, is that I didn’t need to leap. Instead, I needed to build a bridge across the chasm, one plank at a time, and walk over it.

I have had to read that piece over and over again in the last several months. I never seem to stop needing to relearn this time and again: this is a process. I can’t rush it. I can’t just close my eyes, recite “I accept myself as I am,” and open my eyes a new woman. Instantly enlightened. This might take all day. It will probably take the rest of my life, if I’m doing it right.

The chasm I am currently trying to cross is to accept myself as autistic. Frankly, I thought this would be easy. I thought I was going to leap that one in a single bound, because I was so relieved to have the answers that autism provided to the confusing questions of my life, because I certainly accept other autistic people as worthy and valuable just as they are. But it’s not so straightforward. It’s in the details of life that I get tripped up.

Instead of accepting that some things are more energy-draining for me than other people, somewhere in the back of my mind I tell myself, I’m just being lazy. Instead of accepting that my social desires often outstrip my abilities, I tell myself, I’m just being antisocial. Instead of accepting that sensory breaks are real needs, I tell myself, I’m just being weak and pathetic. Instead of accepting that inadequate self-knowledge and attending support have probably held me back from the kind of success I’ve wanted in life, I tell myself, I just haven’t tried hard enough. Those are horrible things I would never say to anyone else, but I feel comfortable saying them to myself!

bridge

But I have to keep laying down the planks and building my bridge. When we don’t accept ourselves, we punish ourselves in all sorts of tiny ways. Self-deprivation is a big one. It’s an easy one, because often it requires zero effort. We simply don’t take care of ourselves, and that suffices to punish us for not being good enough in whatever ways we feel we are inadequate.

Everyone has their own chasms to cross when it comes to self-acceptance and self care. Neurological differences, disabilities, mental illness, chronic physical illness, body image issues, past or current abusive situations, financial poverty, marginalization because you are of a minority race or gender or sexual orientation, failed relationships, thwarted ambitions, career ambitions beyond motherhood or not having career ambitions beyond motherhood. Any of these, or fill in the blank with your own, can be reasons we beat ourselves up, but should not be.

This is precisely why self care is an act of political warfare. To do it you must reject the cultural messages that have told you that you are undeserving of care, for whatever reason. You take back the power to deem a person worthy or unworthy, and proclaim yourself worthy, just as you are.

Three Strokes to One: Social Situations

Autism, Identity

One of the metaphors that my diagnosing psychologist used to illustrate the exhaustion of being autistic in an allistic (that is, non-autistic) world is about paddling down a river. All of the neurotypical people are sitting in their kayaks paddling along with the current, but the autistic person is paddling through a current that runs in the other direction. For every one stroke the other kayakers paddle, the autistic kayaker has to paddle three strokes just to keep up.

It’s not a perfect metaphor, but I think it does speak to the extra effort that goes into much of daily life for me, especially social interactions and aspects of executive functioning (I’ve promised to explain executive functioning in more detail in a later post and I will – it’s a big topic).

When I was younger, I relied on scripting a lot. There are different kinds of autistic scripting, one involving repeating long strings of dialogue/narration from TV or books, but the kind of scripting I mean is that I would craft a script in my head before speaking, sometimes hours or days before interacting with someone, sometimes on the fly if needed – but it still took me extra time to work out what to say.

Throughout school, right into college, I consistently received feedback from teachers that I should participate in class more, because when I did, I had insightful things to say. What I couldn’t have explained was that the problem wasn’t lack of interest, or even shyness, but the difficulty of scripting on the fly in a class setting. Usually I would take so long to perfectly craft my script, that the conversation would have moved on by the time I was ready to say it. Sometimes it just didn’t seem worth it to try.

Now, I’ve had half my life to figure out getting by in the neurotypical world, so I am pretty good at it, good enough that most people won’t notice anything remarkably different about me, but it’s still tiring. Essentially, I have to do a lot of things consciously and deliberately that neurotypical people do naturally without thinking about it. Imagine if you had to tell yourself, “Breathe in. Now breathe out. Now in. Now out,” all the livelong day! Well, that’s a bit what it’s like for me to just operate in the world and talk to people. I am very, very used to it, but it still takes more effort than it takes most people.

I’ve known for a while that introverts find social interaction draining, and need alone time to recharge. That makes sense to me and for a long time I thought it was a sufficient explanation for my social needs. But within the past year or so, the degree to which I am drained by social interaction, and the time and the extent of withdrawal needed for me to recover, have become more and more obviously out of the typical range of introversion.

These days, after I spend some time socializing, say two to three hours, I probably need the rest of the day to keep mostly to myself. That might even last into the next day. If I overdo it entirely, it could literally take days for me to feel back to normal.To give you some idea of what an ordinary social interaction is like for me, this is what might be running through my head if I’m talking with casual acquaintances, or new friends, all the while I am trying to actually participate in the conversation in a meaningful, engaging, and appropriate fashion:

I’ll sit down in this chair. Is this the right chair?
Am I sitting awkwardly? What do I do with my hands?
I should be smiling. Make eye contact. Do I look too serious?
Relax your eyes. You’re squinting. You look too serious.
Should I have offered them something to drink?
Does my shirt look weird?
They’ve asked me a question, ummm, did they mean x y or z by that?
I tried to answer, did that make any sense or sound like pure gibberish?
I can’t tell if that was stupid.
There is a pause, is it an awkward pause or a normal pause?
I’ll fill this silence with a mumbled something-or-other, did that make it even worse?
Is it my turn to speak? Is it theirs?
What do I say next?
I’ll take a drink to stall for time.
They’re looking at their phone, does that mean I’m boring them?
Argh remember to smile!

It probably is not at all obvious that I am doing this running calculation; in fact, though I often appeared very uncomfortable or shy in my teen years, in adulthood I’ve often been told I seem pretty confident. Nevertheless, that is happening in my head most of the time! I do that sort of thing even when I am among just close friends, though with less anxiety, and with family, except for Mike and my kids because with them I can just let it all hang out. So, yeah. It’s exhausting! But it’s second nature now for my brain to do that constant analysis of the situation in order for me to participate.

(By the way, this is why online communication is so much easier. I don’t have to worry about what my face, body, and tone of voice are doing, and the extra processing time is built right in!)

Part of what is freeing about “coming out” as autistic is just not having to hide all of my extra paddling anymore. I’ll still have to do some of it, but I think and hope that at least I will be able to shed some of the anxiety about acting the way I think I am supposed to. I will know that my friends and family will know I am just different, and hopefully along the way I can explain things like – hey, I really have no idea when I am supposed to hug you. If I look like I’m having a bad time I might just be elsewhere in my mind, or a bit tapped out. I care about you a lot but usually don’t know how to show it.

Admitting that this is what socializing is like for me is a little scary. It makes me feel vulnerable. In a way it would be tempting to continue to pretend I am just like everyone else, except that the price of doing that has become too high. It takes too much out of me. Another thing that has been difficult about socializing in my 30s as an autistic person is simply realizing and admitting to myself that my desire to socialize exceeds my abilities at this time in my life. I socially flame out quickly these days and that can be very frustrating, but part of taking care of myself and conserving my resources so that I can do everything I want and need to do is being realistic about what I can handle.

Frequently Asked Question

Autism, Identity, Neurodiversity

The most common question I’ve heard since I came out as an autistic person is, what was it about you that made you seek an autism diagnosis?

I’ve struggled to answer this because I feel like it contains several different questions and I’m not entirely sure which one a person is asking me when they ask it. (You might take note that struggling to answer a question because I am somewhat paralyzed by having to choose from all the many answers that I could give… is part of being autistic!)

So maybe I can unpack all of the questions within the question and answer them separately. This is what I think people might really be asking me when they ask me, what is it about you that made you want to find out if you have autism?

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What are your symptoms? We want specific examples of how you are different.

This one might be the trickiest to answer because although I have always felt different from most people, I can’t think in terms of “symptoms.” Autism is my neurology, it’s the way my brain is wired, not something I “have.” So while I have always felt different from most other people, I’ve always just felt like me. Maybe it’s actually you neurotypical folks who are the weird ones. Ha!

It wasn’t really having “symptoms” that made me think I was autistic, it was seeing myself with crystal clarity in the experiences of other autistic women. But if you want some specific examples of how I think differently, well. I’ll try.

Sensory sensitivities were the first thing that came to my notice via Musings of an Aspie. Being too cold until suddenly I realize I am too hot. Being uncomfortable in my clothes, just, all day. Being on edge, angry, snapping at people, only to realize that there is a background noise that’s actually causing my bad mood. A lot of people have sensory sensitivities without being autistic, but I mention them because realizing what mine are and being able to manage my environment a little are key ways for me to feel good and do the things I need to do.

The longest running issue for me that has caused me the most pain in life is issues with social communication. Many people who read my blog and some on Facebook have mainly interacted with me via written word – this is where I am at my best, communication-wise. So the idea that I have trouble communicating may seem absurd. But verbally, in person or on the phone, I do. I wrote a whole separate post on that because it’s big and complex, but in a nutshell, I never really know what to say, what’s appropriate, what’s expected of me, where to begin and where to end, and a lot of times I just kind of shut down and go blank in social situations. This has always prevented me from achieving the kinds of connections I’ve desperately craved. And sometimes it is so discouraging or just plain exhausting that I don’t even try. So that can be challenging.

And the last area where I feel the most “different” is in executive functioning. I can detail that in yet another post, but the gist of it is that executive functioning is kind of the command center of the brain, the part of you that organizes, plans, prioritizes, executes, and manages all the little and big things you have to do in life. The simplest way to explain why executive functioning is sometimes a challenging area for me is that I get overwhelmed quickly, easily, and often.

But what was wrong, really – were you suffering?

That is a pretty personal question and no one’s outright asking it, but maybe it is implied. All I can say is, I was getting by, as I have always gotten by in life as an undiagnosed autistic. But I felt that getting by was not enough anymore as I have a husband and two kids who need me to do better than just get through the days. I have other family members I long to connect with more than I have. And I have things that I want to do that require me to get out of survival mode. Of course this diagnosis is for myself, but it’s also for all of the people who love me, and whom I love, too.

Am I autistic too?

There are a few people who are curious “what about me” is autistic because they think they might be autistic too. No, not everyone is on the spectrum, but certainly some people are out there who are undiagnosed but autistic. Women especially tend to be underdiagnosed and the big discrepancy in the numbers of male and female autistics is most likely due to underdiagnosis in females. So what I tell people who seriously think they might be autistic and seem to have a strong need to find out is, it’s worth looking into. I am really glad I did.

I also caution you that it can be expensive to get diagnosed, so look into what your insurance will cover, and women should try to find professionals who specialize in diagnosing women with autism, because not all of them recognize autism in women well. Autistic women are more likely to be misdiagnosed with depression, anxiety, OCD, ADD, etc. Don’t let that scare you off, but be aware of it.

If you want to read more, these links might be helpful:

Essential Reading from Musings of a Aspie

Underdiagnosis in Autistic Females from Seventh Voice

The RAADS-R is designed to be used in a clinical setting but you can try it at home

The Aspie Quiz is another interesting self assessment tool

But why did you feel the need to label yourself this way?

I suspect that what some people mean when they ask this question is, why would you want to be known as autistic when you can easily pass for “normal?” If you ask this, you are assuming that autistic is a bad thing to be, something no one would want to be if they had the option to choose. It’s not. And you are also discounting the stress and the depression associated with “passing,” which for me have come to outweigh the stigma of autism.

If you are secretly wondering why I would want to label myself, I understand why you feel that way, because I once felt the same, until I learned more about autism, which is widely and unfortunately misunderstood.

amI

Autism is not a disease or a kind of brain injury, it’s a neurological variant. It’s genetic, inheritable, and has always been part of the human species, but is only now being accurately diagnosed. It is also, however, a real difference in neurology and not just a personality profile. I’m not “just quirky,” my brain actually works differently from the neurotypical brain. It’s not better or worse, it’s just different. (Autistic self-advocates do not deny that autism can be disabling to varying degrees, but that still does not mean there is something “wrong” with any of us. Disability is a normal part of the human experience.)

So I feel a need to label myself this way because this is the way I am. I am not ashamed of it. Sometimes I am proud of it. But essentially it is a neutral facet of my being. Being my true self gives me immense satisfaction, as I think it does for anyone. Oprah made a cliche out of “Living Your Best Life,” but that’s because the idea of authenticity resonates with so many people. And for me, realizing, accepting, and declaring that I am autistic is a path to authenticity. Autism is not *everything* about me, but it’s an integral part.

So if you ask me why I want to label myself this way, to “come out?” – my honest answer is, why wouldn’t I? Why wouldn’t I want to exist in the world as my authentic self? Why wouldn’t I want people to know who I really am? Why wouldn’t I want to be free?

The only reason why not is fear. Every person who lives in a closet for one reason or another has to balance the fear of coming out with the pain of staying in. That fear has legit reasons so I don’t judge anyone for staying in. But I’m coming out.

Neurodivergent

Autism, Identity, Neurodiversity

ananswerYou may or may not remember that I made a passing mention, in a This & That post last fall, of reading and relating to a post on the blog Musings of an Aspie. What I didn’t mention after that was that I continued to read Musings of an Aspie, and I continued to see myself in Cynthia Kim’s blog, and it didn’t take me long to begin to really wonder, was I on the autistic spectrum after all?

Meanwhile, I was struggling to understand why I was feeling the way I was. Tired all the time, flaring up with a hot temper at the littlest things. It didn’t make sense to me that I was so exhausted and edgy and irritable even when I was getting enough sleep, even once I pared down my lifestyle to something very manageable and slow paced, even when I scaled back my workload, even as unschooling took a lot of pressure off my parenting, even though I basically love my life and have a great husband and good friends and adore my kids. Why did things still not feel right? And that dissonance was not a new feeling, as in postpartum depression, but something that I’d always felt to some degree, but gradually became too intense to ignore anymore.

In the months between then and now, I read and researched and learned a LOT about autism in women and how that looks different from what most people think autism looks like (for complicated reasons – I can explain more another time). I formed a support group for autistic women and women who, like me, were thinking they might be autistic, where we could share experiences and ask questions and sort everything out in a safe and supportive space. Those new friends of mine have been invaluable – I appreciate them so much.

Finally, I found a local psychologist who specializes in seeing autistic women, and I went to her for an assessment. It’s worth pointing out that this process can be very expensive and I wouldn’t have been able to do it if we hadn’t had the good health insurance that we do – I wish that more people had access to the psychiatric care they need, but it’s not always so easy.

I was incredibly nervous about the assessment – I felt vulnerable and even a little humiliated just by undergoing a psych eval – and was honestly scared that I would not get diagnosed with autism. Why? The idea of being autistic was like a missing piece in my life that suddenly made everything make sense. I was terrified that if it was taken back out of the picture, I would be left with the same old confusing mess as before.

But I did, in fact, receive a diagnosis of autism last week. It’s official. On the long drive home from my final evaluation appointment, I cried tears of relief and release.

I think I also cried a little for all the me’s I’d ever been – the shy little girl, the misfit teen, the lonely young adult – and what could have been if only I’d known then what I know now.

The psychologist also told me that my results showed chronic dysthemia, a low level depression that’s always been with me and explains a lot of why my energy level tends to run so low. In her view, the difference between neurotypical and how neurodivergent a person is tends to get “colored in” by depression and/or anxiety. This made a lot of sense to me as basically my efforts to meet the neurotypical world on its terms every day result in fatigue and vague sense of never being “enough.”

I know this will be surprising to a lot of people, and I understand why – I was surprised when I first realized that I might be autistic. I think this is largely due to the fact that very few people, besides people who are actually autistic, know much about autism – which several people have told me since hearing my news. But I can tell you that for me, it just means a huge weight has lifted off my shoulders. Knowing that I am, in fact, a perfectly normal autistic person, makes everything just slide into place. It’s an answer to a question I didn’t even know I was asking for the first 36 years of my life.

A Month on Creativity

Creativity, Identity, Writing

Erin5four

Drawings I made at age five.

I believe that all people are creative. I know many disagree with that – often it’s the people who think they themselves are not creative. But creating simply means bringing something into the world that was not there before – it might be a drawing or a song, or a mathematical proof, or the execution of a football play, or just a solution to a problem.  Creativity is part of being human. The idea that we are “not very creative” is a story we tell ourselves, and it is false.

I do believe that everyone possesses this well of creative energy. It doesn’t mean that everyone is a genius or a master of something. It doesn’t even mean that everyone has to “do what they love” as a job. It just means that everyone is born with the ability to make something out of nothing. People themselves are works of creation, of course – a baby is a new person who never existed before.

I’ve always taken a special interest in children’s drawings – not just my own or my children’s. Nearly all children begin to draw at some point in their development; it’s a preliterate form of expression that has been with our species since before we invented an alphabet. Before adults begin to interfere with the process, all children – not just the “artists” among them – have a natural sense of composition and form. Ironically, it’s when formal instruction is introduced that children tend to lose that innate sensibility, and trying to get their drawings “right” is something that cuts them off from their own creative powers.

Erin5one

Another of my drawings from when I was five years old.

Last month I was at the local art museum with Mike and the kids and we went to visit the water fountain at the same time that a school group was there drawing the fountain – I would guess they were about second or third graders. I was surreptitiously watching them draw for a few minutes, though it seemed most of them had finished their pictures by the time we arrived. The students whose drawings I loved the most had a kind of confidence and immediacy to them – some done quickly, some undertaken with more care and time, but the best ones to me all possess a sense of freedom and uninhibitedness that can’t be faked.

I saw one girl, on the other hand, who had drawn a few timid lines, looked around at her neighbors, caught me watching her, and began to furiously erase her work until she literally ripped a role in the paper. Past a certain age – maybe kindergarten age? – I think there are always a few of these types of kids in any group. Sometimes they are in fact the Artists of the group who have been singled out by parents or teachers as being “good at drawing,” but sometimes they are at the other end of the ability scale, the ones who have noticed or had pointed out that their drawings don’t look as good as the other kids’.

Later that day when we were in the kids’ art space at the museum, I gestured to the wall of children’s drawings, things that had been done there in the museum and pinned up, and asked Mike to guess which one I liked the best. It wasn’t the most realistic, the painstakingly “shaded” close up of a flower, the most technically advanced, the one that probably 9 out of 10 kids or adults walking by would instantly pick out as best. It was a delightful still life, done in a simple line drawing style, terrifically out of proportion, the perspective nothing close to reality, but it was alive, and made perfect sense in its own little world on the page.

That drawing had the sort of energy that most adult artists try to tap back into for the rest of their lives. When I was a freshman at RISD, my first semester drawing teacher had us sit and scribble in large newsprint pads for the first 20 minutes of every class. We were not to draw anything representational or try to make it look “good,” whatever that might mean. When I was 18, frankly, that exercise was baffling and frustrating to me – I was there to make “good” drawings, why was I scribbling? – but now I totally understand it. To make something good, it must be real, and to make it real, you must let go of making it good. It’s at the heart of why early childhood drawings are so fantastic. They are not focused on making Art, they are purely making.

I’ve decided to write on the theme of creativity in this blog for the month of March. It’s something I’ve been thinking about quite a bit lately. Right now I am still reading and doing the 12 week course for The Artist’s Way and at the same time have also been reading Sir Ken Robinson’s The Element: How Finding Your Passion Changes Everything. There is considerable overlap between the two books so it’s been fascinating to read them simultaneously. At the heart of them is the idea that tapping into your passion – whatever form your personal expression of creativity takes – is to tap into your authentic self.

What I Learned From A Week Without Media

Identity

My media brownout is over – one day short, but I’m done. If you missed it the first time or want the full refresher on what the terms of my brownout were, the original post is here. In a nutshell, I avoided watching TV or reading anything – that included books, magazines, blogs, articles, anything – and I kept my Facebook and Twitter use to a bare minimum. I tweeted but did not read my timeline. I updated my Facebook Pages and checked my notifications just to make sure I wasn’t ignoring anyone who needed me but I avoided responding to anything non-essential and did not read my newsfeed.

The purpose of all of this was to stop consuming other people’s words and ideas and focus on producing my own. Perhaps to turn my attention to some things I’ve been wanting to do but haven’t gotten around to.

What I Liked

There were some things I liked about the brownout. I did notice that I felt less distracted, less forgetful, less disorganized, and even in some ways less anxious and depressed – at least for the first few days. I organized the pantry, scrubbed the shower, baked bread, cleaned out some jpegs off the old digital camera.

I played with the kids more, and they definitely liked that – though I think I also snapped at them more because I didn’t get many restorative breaks from playing. I noticed that THEY spent a little less of their time on screen time, which made me realize how subtly my habits affect them, even though I always thought I was just sneaking away to Facebook when they were otherwise occupied.

I did some more writing and drawing than I usually do, though that was partly out of sheer boredom and lack of anything else to do. I got around to some little creative projects I’d wanted to do, like 4 minute daily diaries inspired by Lynda Barry’s Syllabus: Notes from an Accidental Professor.

What I Disliked

On the other hand, there was a lot about this experiment that I disliked. I felt like I was working all the time, because when I wasn’t taking care of other people or the house or my chores, I was writing and drawing. And even though I like writing and drawing, it feels like work. Work that I enjoy, but still work. None of the usual “treats” that I give myself for a hard day’s work were available, I was bored a lot, I ate more, and eventually the daily stress with no outlets really wore on me.

It felt wrong to be totally disengaged from the rest of the world. It seemed selfish and ridiculous to just shout my thoughts into the void without engaging in conversations online. I missed out on things that were actually important even if they were “just” on Facebook – sometimes when stopping in to check notifications I would see a friend having a problem and feel so guilty for not answering their call for support. If I hadn’t cheated I would have missed a pregnancy announcement, a marriage engagement, my brother’s girlfriend’s birthday, and who knows what else!

The thing about social media is it’s called social for a reason. I hated turning my back on it completely. My friends on Facebook and in the blogs I read are not just noise, they’re real people that I care about.

Jonesing

The Hardest Part

I think the hardest part of the day for me was the very end of the day when the kids were asleep and I sat down to relax with Mike. There was no pot of gold waiting for me at 10pm – just more writing, or bed. I did try going to bed earlier, but that didn’t mean I slept better.

Not reading at all was just sad and depressing. I missed my books. Friends would talk about books, Instagram pictures of books, even LEND me books, and I felt like an alcoholic trying to drink a soda water at the bar. It was just terrible. If I am addicted to reading, that’s an addiction I can live with. If anything, taking a break from reading made me appreciate reading even more. A life without words is no life for me.

What did I learn?

I did not feel like the brownout enhanced my creativity directly. Already by the end of the third day I felt like my well was running dry. To me, taking in other people’s ideas is part of the creative process. Other people’s writing stirs up memories and ideas; without them, I stagnated. The brownout did, however, free up time for me to write and draw more, and I think that having a more organized space indirectly made me feel more creative.

I noticed, by not being on my phone for all the little boring waiting-around moments of the day, how much everyone else is on their phones. I felt a little smug and annoyed but also very aware that I was partly just jealous and would be doing the same if I could – like being a pregnant lady or designed driver at a drunken party. I think a lot of people fantasize about disconnecting from the internet, but it hit me that in 2015 that means disconnecting from the world we live in, and that’s pretty unavoidable.

I learned that being on Facebook for much of the day definitely has negative effects for me. It makes me more distracted and spacey, I get less done, I have less energy, and I think that being connected to other people’s problems for too many hours a day made me feel depressed. I liked how it felt to be off Facebook all day – but I didn’t like NEVER being there. So I think I will just go on Facebook at night from now on.

My New Plan

In a general sense, I found a media rhythm to my days that felt natural. When my options were severely limited, I could think more clearly about how I really wanted to spend my time. Here’s what I came up with:

In the morning I think it’s good to be available as much as I can. Of course I check email every morning just in case there is something time sensitive and/or work related. I have breakfast with the kids, play with them, and write when they don’t need me, since I tend to have the most creative energy before noon. I putter around the house a bit, do some chores and some little projects if I have any. We go out if we have somewhere to go or something to do.

In late afternoon when the kids are usually vegging out by themselves, I need downtime. I’ll stay off Facebook still, but it would be a good time to read blogs and books.

I figure after 6pm going on social media is fine. Sometimes I like to write, or read blogs, or if I’m just beat I can look at Facebook.

There always comes a point just before bedtime when I am done with everything and the only thing I want to do, until the kids are ready to actually get in bed, is read a book. And that is what I will do, just as I always used to. This time sucked during my brownout – I usually just sat and stared into space, not thinking about anything.

After the kids are in bed, it’s my time with Mike. That can include TV time, since I did not feel like we had an awesome time without it! We are usually too tired to have scintillating conversations at 10pm, and you can’t do that other thing every single night (well, we can’t). It’s fun to enjoy TV together.

My time after that, if I’m not quite ready to sleep, is mine. Facebook, reading, TV, mine mine mine. I don’t feel bad about that one bit. Going to bed listening to white noise was sad and dreary. I didn’t sleep better and I hated it!

Youwantme

Would I recommend a brownout?

Do I think you should try this? Yes, with caveats. I definitely did not think I needed a FULL week to get what I needed to get out of the experiment. I started writing this wrap-up post on Day 4 and finished it on Day 5. On Day 6 I was really starting to reach my limits, and cheating more and more. I cheated to watch the Superbowl with Mike, which was fun, and after that it was over for me.

I don’t think that I got much out of not reading books. I guess it probably would have been less effective if I had simply filled up my day with MORE reading than I normally do, and continued to exist in a state of semi-distraction all day and night long. So if you can avoid doing that, I see no need to stop reading. It did not give me more creative ideas or energy and if anything did the opposite.

I think it’s worthwhile to give up Facebook and Twitter entirely for a short period of time, maybe a few days. It gives you a better sense of how much time you do want to spend on them, which almost certainly won’t be NEVER, but probably not as much as you were before.

As for TV, meh… that depends on your TV habits. If you feel you watch too much, try giving it up for a few days. I didn’t think I watched too much before and I still don’t.

If you do try this, please holler at me in some way – on Facebook or Twitter or in comments here – to let me know how it goes! I would love to hear about what you got out of your media brownout.

Media Brownout?

Books, Identity

I’m reading a classic book about unlocking your creativity – it’s called The Artist’s Way by Julia Cameron. The format is a 12 week long course with some reading from the book and a number of exercises that are supposed to help you “unblock” your artistic ability. Since starting the course, I have been writing three longhand pages of free writing each morning, taking myself on one “artist date” a week (if I can manage it) (the “date” just means going out ALONE and treating myself to a nice time), and doing many of the thinking/writing exercises.

For week four, Julia has asked me to take a break from consuming media. Her book predates the Internet, so she doesn’t mention it, but I think it’s safe to say she would include that in her prescription, in addition to taking a week off from watching TV, and also…

Reading.

She knows that the break from reading is shocking. She claims that blocked artists tend to be addicted to reading because it helps them stuff down their own creativity. I don’t know about that. If that’s true, I’ve been a blocked artist since I learned to read. I LOVE reading. I love books. Reading is like breathing to me. I MIGHT DIE.

Also, I’m kind of resentful slash dubious about the idea of a media break for myself, because without Internet, TV, or books, what kind of downtime am I going to get? That’s pretty much all I’ve got going on as far as relaxation and me time. Julia thinks that if we aren’t reading and watching the tubes we’re finally going to get to all those hobbies we’ve been meaning to try. Uhhhh, look, Julia. I am not running out to taking surfing lessons any time soon.

I’m a little unsure about the whole Artist’s Way endeavor, really, because I’m not so convinced that I AM a blocked artist. I feel pretty in touch with my creativity. What is preventing me from creating more than I do is a little thing called parenting. And I’m not about to give that up.

Still, I’m trying out the course, albeit slightly tailored to the demands of my current lifestyle. I have to admit that I have noticed an eerie synchronicity between some of the stages she talks about and things that are actually happening to me. The emotional phases, the vivid dreams, etc.

media

My weeks for the course run from Tuesday to Tuesday, so I started yesterday. Here are the terms of my brownout, tentatively so far. I put a question mark in my post title because I am not at all certain I’m going to stick with this for a week. Also, sad but true: if I can’t read OR watch TV on my phone, I really have no idea how I’m going to fall asleep. I haven’t done that probably since I was a toddler.

Facebook. I’m off my personal Facebook feed for the week. I can still get messages to my Messenger app, and I have the Pages app to monitor the Pages for my blogs and other projects (uhhh I have a few!). I’m permitting myself to scan my notifications just to make sure I am not tagged in anything urgent – but no responding unless it’s truly urgent!

Twitter. I’m tweeting here and there and responding to tweets (again, I count this as necessary blogger presence). I’m not reading my feed. I don’t look at Twitter all that much anyway so it’s no big sacrifice.

Blogs. I am writing blog posts (obviously), since I think that can be counted as creative work! I am going to take the week off reading blogs. I feel a little guilty about it, seems selfish of me to ask people to read mine when I’m not reading theirs, but I’ll catch up at week’s end.

Instagram. I haven’t been using Instagram that much and I don’t spend much time on it when I do, so I’m keeping it on my okay list. If only to record the events of the week.

Pinterest. I use Pinterest so seldom that I almost forgot to put it in the list. Meh.

TV. I am giving myself a husband loophole here. We usually watch ONE show together after the kids are asleep. I know there are other things we could do, but we are usually pretty fried by 10 pm. If we don’t watch any shows all week, what’s going to happen is he is going to surf social media while I stare at the walls, or… take up knitting in silence? Maybe I could sit and write. Hm. That might work.

Music. Julia does not forbid music, which gets the side eye from me, because what if I were a blocked musician? I’m not, though, so music stays.

Books. I… guess I will try this. I’m not happy about it. I might quit. I’m mostly just curious to see if I can do it and if I will magically start writing a novel if I don’t have any stories coming in to my brain for a week. It might even be good timing since I am not currently reading any library books, BUT I just had a hold come in on a book I’ve been waiting for for months. I might be able to read it in a week after my brownout is over. I won’t give up reading to the kids.

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Zen and the Art of Housework

Identity, Parenting

I dread housework, I dislike it, and I’m not very good at it.

Well, that’s what I’ve always told myself, but things are beginning to shift.

I’ll probably never be GOOD at housework; I lack the patience, the focus, the energy, the pure elbow greasability to really do an excellent job of cleaning. But it seems that I dislike it less and less as time goes on, at times I would say that I even enjoy it, and that means I dread it less, too.

Mike and I always had a fairly egalitarian arrangement when it came to keeping house. (It was no accident that I married a man who had clearly managed to keep a tiny studio apartment (even tinier than my tiny studio apartment at the time) relatively tidy.) But, things change. I didn’t foresee ever wanting to be a stay/work at home parent, I didn’t foresee how much Mike would work or how physically hard he would work, I didn’t foresee being a person who would never send my kids off to school (which means they are HERE ALL DAY playing and making messes), I didn’t foresee being a parent who would choose not to use behaviorism to get people to do what I wanted them to do.

All of the above factors led to a reality where I found myself doing more housework. Initially, I rebelled internally. I resented, wallowed, nagged, and sometimes lashed out. That made me unhappy. Then I tried another tack. I sank into the work. What would happen if, instead of spending time thinking about what was fair or how much I “should” be doing or how much I hated doing it, I embraced the work and owned it as my work.

Zen HouseworkI recognized, when I turned down the volume on my inner whining, that Mike was already working a lot; he was willing to do his part at home, but his part was simply a lot smaller – he is home a lot less and does not have much time for housework, while I have lots. I recognized that the kids had their own work to do, of learning basically everything there is to know about life, and their work was valid too. I recognized that I was lucky, in fact, to stay home with the kids, I wanted to be there, I appreciate our home and want to take care of it, I was happy that we’d been able to provide this enormous mess of toys and abundance of food that was spilled all over the table and floor, I was – though I hate this word, it’s so sentimental – grateful.

I admitted to myself that huffing around the house complaining about the mess and cleaning with a scowl on my face was teaching my children that housework is dreadful, no fun, a burden, a drudgery. Why then would they ever want to do it??? Sure, I could MAKE them do it, but they’d do it against their will and hate housework all their lives. There had to be a better lesson to be learned than that.

So I sort of suspended my opinion about what housework is like. Just pretended I had no feelings about it one way or the other, it was just something to be done and I would do it. Not by setting a timer or making a schedule or checking a checklist or “making it fun” with some assortment of tricks, but actually turning my attention to the tasks before me and doing the work.

And the weirdest thing happened. I started to like it.

Sometimes I listen to music or a podcast, and sometimes doing laundry or dishes can be a way to get a break from the kids’ demands, yes, but none of that is really the point. It’s almost hard to put into words, because it’s a wordless kind of experience. When I wipe down the kitchen, I am just wiping down the kitchen. I do the steps without judgment. When I clean the floors, I am just walking around pushing my steam vac. The floors get filthy again by the end of the day and I don’t care. I did the work and I’ll do it again. There’s a simplicity to it that is restful even though my body is at work.

So a funny thing began to happen when I found contentment in housework; the other people in my family began to join in more often. Mike has taken up an interest in cooking, and is teaching himself how to make things like pancakes and French toast on the weekend mornings, and tried his hand at granola bars. The boys get out the broom and try to sweep sometimes when they’ve dropped a bunch of kinetic sand on the floor, and they pick up their toys now and then without being asked.

Housework to me, now, is peaceful. It’s a way to rest my mind, to use my body, and to care for my home and my family. It requires no expert advice or knowledge – at least not the way I do it! – no thought, no anxiety, no busy-ness, just attention.

The Discomfort Zone

Identity

Comfort Zone

I’ve spent most of my life getting out of my comfort zone, because basically my comfort zone is being alone in a room with a book.

Yeah, it’s weird to quote myself on my own blog, but sometimes you don’t realize how true a thing is until you hear it coming out of your mouth. Mike and I were talking over dinner about a book he was reading, a kind of motivational thing about facing your fears, discomforts, and painful experiences, and pushing through them to make progress in your life.

Yes. I know what that means, because that’s what I’ve been doing almost every single day for as long as I can remember.

I have to qualify my statement somewhat by saying, my sweet spot is probably being alone in a room with a book AND other people elsewhere in the house. I’ve been really alone before, and learned that there is such a thing as too much aloneness, even for me.

When I was 25 I rented a studio apartment in Lower Allston, Massachusetts, where I lived by myself for one full year. I thought I would love it, because I’ve always needed and enjoyed more alone time than the average person. But the bloom wore off the rose soon enough, and I found out that coming home from work every night to an empty apartment was not only a little lonely, but eventually made me feel disconnected from reality.

I was surprised once, in my mid-20s, when a friend described me as “ambitious.” That was never a word I’d thought to apply to myself, but now I think I can see that the way ordinary life has always subtly, insistently, relentless prodded me to get out of my comfort zone – just to function, really – has its benefits. I am accustomed to feeling uncomfortable. Many of the most ordinary tasks and interactions of everyday life require me to overcome feelings of either fear or fatigue. But I do them because I have to, or in many cases because I actually want to! Pushing through is a way of life and I think mostly a positive adaptation to my personal challenges.

There are times, though, when I need to pull back and conserve my resources, and those times are not always easy to recognize. I never think of myself as a Type A personality, because I am not achievement- or status-oriented, but I do sometimes over-commit to things out of pure enthusiasm and excess creative energy. Creative energy, I’ve learned, does not always = actual energy!

Those are times when I need to retreat to my comfort zone and regroup. If I push myself too hard, I pay for it. If I go too hard for too long, I end up needing an extended hibernation period, and modern human life does not really allow a person to hibernate! Certainly, life with kids doesn’t. So I end up feeling like I am trying to sprint underwater for months at a time until things come back into balance. Which is about where I am now.

Still, I know that living in The Discomfort Zone has allowed me to do so much in life that I wouldn’t have done if I hadn’t stretched past my fears and anxieties. Even living alone in Boston is something I am glad to have done, since during that time I managed to confidently navigate public transportation (I was a bus system regular), go out to eat or drink by myself without feeling self conscious, find a job, quit a job, cut my own hair, talk to strangers, start a business, start a blog, end a blog, meet my future husband. There were a lot of clumsy moments and some failures but a lot of accomplishments too. Things I might have only read about if I’d sat alone in a room with a book.