Category Archives: Health

Improving Access to Health Care for Autistic Adults

June 3, 2014 musingsofanaspie 75 Comments

When I posted about my kidney infection saga last summer, a lot of you shared similar stories about difficulties with getting the right treatment for an illness. Often the stories revolved around how hard it is to get proper diagnosis and treatment when your body and brain are atypical in ways that a lot of doctors are not used to seeing. There were a few themes from that post that stayed with me:

We often have atypical symptoms and atypical reactions to medications
We often have difficulty describing our pain, symptoms or illness in a way that doctors understand
Many of us have had bad experiences with the medical system because of communication barriers or the way we experience our bodies
Sensory sensitivities, communication barriers and bad past experiences can cause us to avoid seeking out medical care when we need it

Today’s post at Autism Women’s Network touches on all of these issues plus a few more that I’ve encountered in reading other autistic adults’ experiences: Accessible Health Care for Autistic Adults

In an ideal world, health care providers would receive training in making care more accessible to autistic adults, and maybe that will be the case in the future. Until then, those of us who feel comfortable doing so have some self-advocacy options:

Ask our health care providers for the accommodations that we need to make care more effective. This is a hard one because there is an inherent power differential in the doctor-patient relationship. Sharing general information articles like today’s AWN post and the information for providers at the AASPIRE website can be a good way to start a conversation.
Share information about doctors who are autistic-patient-friendly. AWN is creating a crowdsourced directory for women’s healthcare providers which is a great way of making information available to a larger number of people. Within the autistic community, there is also the opportunity for informal sharing among people who live in the same city or community.
Take advantage of resources like a personalized AASPIRE report to share our specific needs with doctors we see regularly. The AASPIRE reports are very detailed and probably beyond the scope of a short one-time visit to a new doctor, but they could play an important role in an ongoing doctor-patient relationship.
Enlist allies. Sometimes medical appointments are more successful when we bring along an ally who can act as our cognitive interpreter or support person. This is especially true when an illness is interfering with our communication or decision-making abilities.

I’m sure I’ve missed things, both here and in the AWN article so, as always, I’m looking forward to your comments.

Health

Shape Shifting

June 4, 2013 musingsofanaspie 34 Comments

Recently The Scientist said, “I’m concerned that your world is shrinking.”

I asked him why. He elaborated. I didn’t say anything substantial in response because, as so often happens, I didn’t have a coherent answer at the time.

But that statement has been roaming my brain for the past few days, measuring my current state of affairs against times past.

Shrinking implies something that was once larger or more abundant. Two years ago I was finishing up my long-put-off university degree. I was spending three days a week on campus, surrounded by people, interacting all day, commuting an hour each way, expanding my intellectual horizons. The Scientist and I also had frequent social engagements because we lived in an area where we knew quite a few people.

Since then? I’m back to working at home. My days have a predictable rhythm: wake up, workout, write, work, eat a few times in between. Some days the car never leaves the garage. The geography of my social interaction is smaller than it was when I was going to school. Or years before that, when I was working at a job that required interacting face-to-face with people all day long or when my daughter was in school and I had to shuttle her to events and such.

There was a time in between all those other times–a time when you could say that my world shrunk very small–and I found the kind of internal quiet that I hadn’t known existed. The Scientist and I moved far away from our roots, to the desert, to a place so remote that we regularly encountered coyotes on our evening walks and the nearest gas station–the nearest anything–was a fifteen minute drive.

In that place, I found a deep internal sense of quiet. I let go of a lot of old hurts. I started to understand myself.

Of course, life gradually crept in again. We formed ties. We put down new roots. I decided to go back to school. Gradually I began to feel a creeping sense of unease. The quiet I’d found receded as I found myself having to back out of that peaceful place I’d created for myself. One by one, I backed out of the rooms in my mind, turned off the lights and closed the doors, shutting away the parts of myself that I instinctively sensed wouldn’t survive being exposed to the outside world.

Until something inside me rebelled and refused to close another door. The place I’d found–it was hard to leave and harder to close away without knowing if I’d be able to find my way back. In retrospect, that internal rebellion–the tension that arose between the security of the peaceful place I’d found and the stimulation of the outside world I was being drawn back into–was the first step toward discovering that I’m autistic.

I didn’t know that then. All I knew was that something had to give.

The tension grew in a way it hadn’t before. I became acutely aware of the two very different places I lived in. There was this new place, which existed mostly when I was alone, that felt very natural. It was secure and comfortable and, most of all, quiet. I hadn’t been in a place that internally quiet in a very long time, certainly not since I’d reached an age that had two digits in it instead of one.

Then there was the other place, the one I’d taken for granted as being life, the one where I kept a stranglehold on everything to keep it from flying apart. It was a place that pushed me to grow and expand myself, but one where I lacked the natural ease I felt in the new place I’d discovered.

I tried shifting between the two places but that turns out to be impossible for me. In typical aspie fashion, I have no idea where the middle ground is. I can be here or there, but commuting between them isn’t something I can do on a daily basis. When I do shift–like I did after my recent trip, moving from the intense interaction of being with people 24/7 for 10 days to the quiet of home–it can take me weeks to rediscover my equilibrium.

That got me thinking about where the source of that equilibrium lies. I think it lies in my true self, the one that is more fragile than I’d like to admit and that I can close off inside a nice safe cocoon when I need to, safe from harm but inaccessible.

It’s scary to realize that I can intentionally dissociate myself, scarier even to think that for years I’d been doing exactly that without consciously being aware of it. At some point–probably very early on–closing off parts of myself became my main defense mechanism, a way to survive in a world I find hard to navigate and harder to understand.

That can’t be healthy. I don’t enjoy it. I wish my quiet self was strong enough to go into the world without having to close all those doors. Perhaps the place I’m in now, this revival of my quiet period as I’m starting to think of it, is my way of nurturing and fortifying my quiet self for whatever comes next.

On my trip, I felt like I had to close off myself less than I did in the past. There are some doors I can leave ajar, some lights that I can dim instead of extinguishing. Thanks to understanding my autistic brain better, I have coping mechanisms available to me now that I didn’t before.

It may be a few years before life shifts again and takes me into a new phase as it inevitably does. For now, I’m planning to make the most of this quiet period, writing and thinking and being with myself. I think a certain amount of withdrawal from the world–a redirection of my resources–is necessary for me to expand myself internally.

Is my world shrinking?

Days later I let The Scientist know that I’d found my answer. What may appear from the outside to be smaller is on the whole simply changing shape. Again.

Health, Uncategorized

Some Rambling about Insomnia, Melatonin, Nightmares, Anxiety and Autism

April 11, 2013 musingsofanaspie 30 Comments

Last November I wrote about my insomnia and nightmares. Since then, I’ve been conducting some experiments. Here’s an update on what I’ve learned:

Sleep Study

In early December I started taking melatonin and I immediately felt like I was sleeping better. To be certain I wasn’t just imagining that my sleep had improved, I conducted a 2-week sleep study on myself.

The Scientist hooked me up with an armband that monitors sleep quality. I wore it while I slept for two weeks, one week on the melatonin and one week off. Thanks to the software that came with the armband, here’s a graphic representation of how well I slept during each of the weeks:

sleep_nomelatonin — Dark gray areas=sleeping; Light gray areas=lying down, not sleeping; White areas=not lying down/sleeping

Dark gray areas=sleeping; Light gray areas=lying down, not sleeping; White areas=not lying down/sleeping

I was surprised by how frequently my sleep is interrupted on any given night. There is one night out of each week that I got a long uninterrupted period of sleep. On most nights the longest period of continuous sleep is a couple of hours or ninety minutes. I knew that my sleep patterns were disrupted, but I didn’t know the problem was this bad.

Some statistics:

Sleep efficiency (time spent sleeping/time spent lying down)

with melatonin: 82%
without melatonin: 80.5%

Average hours of sleep per night

with melatonin: 7 hours 10 minutes
without melatonin: 6 hours 45 minutes

I also found it interesting that I have to spend 9-10 hours in bed to get 8 hours of sleep.

So does the melatonin work? I averaged 25 minutes more sleep per night when I was taking it, which added up to an additional 3 hours of sleep for the week.

Melatonin

Since doing the sleep study two months ago, I’ve continued taking melatonin and it feels like my sleep has continued to improve. There are still nights where I only get 5 hours of sleep (last night, in fact) or I’m wide awake at 3:30 AM, but they’re less frequent. In general, I fall asleep more quickly. The melatonin creates a pleasant drowsiness that makes it easier to fall back asleep when I wake up during the night. Some days I feel a little sleepy in the morning, but that fades after I exercise, which I do first thing after getting out of bed.

If you’re considering taking melatonin as a sleep enhancer, there are some things you should know:

Melatonin makes you sleepy. Take it only at bedtime. I take 5 mg about 30 minutes before bed.
High doses of melatonin have been associated with increased depression and psychosis in people already suffering from these conditions. Also, women who are pregnant or trying to become pregnant, nursing mothers, and individuals with cancer, leukemia, lymphoma, multiple myeloma or Hodgkin’s disease should not take melatonin. It’s a good idea to consult with your doctor before starting the use of a melatonin supplement, especially if you are being treated for any other condition or taking any type of medication.
In the US, you can buy melatonin over-the-counter at stores that sell vitamins and supplements. It comes in 0.75 to 5 mg doses. Taking the smallest effective dose is safer.
Melatonin makes you feel drowsy and relaxed but not drugged, so you should still be able to easily wake if necessary, for example to respond to an emergency call from a family member.
It’s often recommended that you take melatonin every other day so you don’t inhibit natural production. (Personally, I think my natural production is already screwed beyond all hope and always has been, so I take it every day.)
Some people take melatonin for a few weeks then take a week off on the belief that it loses it’s effectiveness if taken continuously. I’ve been taking it for 5 months with only two weeks off (one due to illness and one for the sleep study). I haven’t seen a drop in effectiveness.
If you feel groggy in the morning, try reducing the dosage.
Some people experience nightmares when taking melatonin. (I’ve found that my nightmares have lessened–more on that in the next part).
Other side effects can include: mild headache, upset stomach, lower sex drive and depression. Again, reducing dosage can alleviate side effects. Most people don’t experience any side effects at a dosage of 1 mg.
Some people experience rebound insomnia when they stop taking melatonin. I stopped twice for about a week each time and didn’t feel like my insomnia was any worse than it had been before beginning the melatonin. One way to avoid potential rebound insomnia is to taper off, using lower dosages over 1-2 weeks if you decide you no longer need to take it.

My Nightmare Journal

When I wrote about nightmares, I suspected that they were connected to unprocessed bouts of anxiety. To identify trigger events, I started a log of my nightmares along with some details like possible triggers and whether I’d felt like I processed the triggering event. My goal was to become more aware of triggers and spend time working through them during my waking hours rather than letting my sleeping brain get creative with them.

According to my log, here is # of nights that I had nightmares each month:

Nov 15th-30th: 4 nights
December: 10 nights
January: 3 nights
February: 1 night
March: 0 nights
April : 0 nights

I know what you’re thinking: You did it! You learned to identify your triggers and process your anxiety!

Well, no. I tried that all through December and failed miserably. Then in January, I said “fuck you, anxiety” and I wrote this. And hey, the nightmares disappeared!

Two things seem to be at work here. First, melatonin helps me sleep more deeply, which makes my dreams harder to remember and less vivid. Of the 14 nightmares I had after starting on the melatonin, I rated 6 mild and 2 moderate. That alone is a relief.

The other thing that’s happening? I’ve become autistic in my sleep! On January 23rd, I got my flap back in a dream. After that, I had only 2 nightmares and 1 of them didn’t fit my typical nightmare profile at all. I’ve started dreaming in an entirely different way.

In my dreams now, I often tell people that I’m autistic or consciously think of myself of as autistic. That’s completely new. Twice, when it seemed like someone was going to attack me, setting off a typical nightmare scenario in which I had to physically defend myself, the police showed up and took the threatening person away! That’s never happened before. Another time, I was lost and couldn’t find my new (in the dream) apartment. I told some people who worked in the building that I was autistic and couldn’t remember where I lived and they all offered to help me. That never happens in my dreams either.

This is really exciting. I feel like the way I’m thinking about myself and my relationship with the world around me is changing in a profound way. The changes to my dream life are concrete evidence of this.

That’s not to say I don’t have any disturbing dreams. I have plenty. I dream that I’m late for important events. That I need to call 911 but no one answers or the phone doesn’t work. That I need to run but my legs don’t work. That I’m blind. That I’m in school but don’t know my class schedule. That I have a baby but keep forgetting to care for it.

I also still have weird, inexplicable dreams. That I’m playing golf, but in the opposite direction of everyone else on the course. That I’ve accidentally rubbed the ink from my tattoo off and when I check it in the mirror I notice that I’m also pregnant.

All of those dreams are unsettling, but they aren’t nightmares. I don’t wake up sweating with my heart pounding out of my chest. I don’t cry myself awake. I don’t startle awake because the dream has become so intensely physically painful that I can’t stand it anymore. I don’t spend most of the next day trying to forget frightening images. I’m not reluctant to go to sleep the next night.

I’m okay with having occasionally unpleasant dreams, as long as the really bad nightmares stay away. Will they? Who knows. I’m in a fairly stressful period right now, one that would have typically triggered a nightmare cycle in the past. So far, nothing.

If they return, I’ll be back to ramble some more.

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A related link about sleep disturbance and ADHD that talks about melatonin and light therapy as ways to lessen insomnia: findings from a study about ADHD and sleep dysfunction

Health

My Anxiety is Not Disordered

February 28, 2013 musingsofanaspie 77 Comments

Bringing this post back for this month’s Down Wit Dat T21 Blog Hop

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I’ve been thinking and reading a lot about anxiety recently. When I was diagnosed with Asperger’s, I was also diagnosed with Social Anxiety Disorder.

Here’s how I feel about that: Social Anxiety? Yes. Disorder? Not so much.

Disorder implies that my social anxiety is irrational. Is it? Consider this:

“Anxiety at appropriate levels is important for adaptive functioning. There are many environmental hazards that must be avoided and these are often learned through the process of anxiety induction. The resultant anxiety response is learned through the association of certain stimuli with unpleasant consequences.” (from “Autism and the Physiology of Stress and Anxiety”, Romanczyk and Gillis)

Anxiety, like fear, protects us from danger. It raises our guard and makes us wary. In this way, it’s healthy. Without it, we might be less motivated to get an education, to work, to care for our loved ones and ourselves.

What is Anxiety?

Anxiety is a state of worry, concern or dread related to something that hasn’t yet happened and may, in fact, never happen. Think about some things that we typically feel anxious about:

committing to a relationship
giving a major presentation for school or work
becoming a parent
meeting a partner’s family
starting a new job
learning to drive
flying on an airplane for the first time
traveling in a high crime area

When you feel anxious about an upcoming event, you spend more time thinking about it and preparing for it than you would for a more mundane activity. You examine the possible consequences and give extra attention to your actions to ensure the best possible outcome. Anxiety heightens your awareness; heightened awareness sharpens your focus, increasing your safety.

It’s important to note that here and throughout this piece, when I talk about anxiety, I’m referring to appropriate levels of anxiety, not paralyzing anxiety. An appropriate level of anxiety is one that is manageable. I feel nervous in the days before giving an important Powerpoint presentation, but I manage my anxiety and complete the presentation to the best of my ability. An inappropriate level of anxiety is one that prevents a person from completing a necessary or desired activity. For example, if I got so anxious about the presentation that I ended up sick in bed, fainted in the conference room, or lied to avoid presenting.

Not all anxiety is healthy and it’s important to recognize where your anxiety falls on the healthy/unhealthy continuum.

The Function of Social Anxiety in ASD

So that’s how anxiety works in the typical brain. But what about in the autistic brain?

From childhood, autistic people know that we’re missing key information in social situations. We often have difficulty interpreting facial expressions, tone of voice, body language, and non-concrete speech. Some people also struggle with auditory processing and sensory overload in public or group settings.

The results of our social communication challenges can range from inconvenient (missing a joke or not following a conversation) to dangerous (being bullied, taken advantage of or assaulted). There are also negative health consequences–many autistic people need hours or days to physically recover from prolonged or intense social interaction.

Over time, “through the process of anxiety induction,” we realize that certain social situations are “environmental hazards that must be avoided” (as Romanczyk and Gillis described). In other words, because of a very real hazard, we develop anxiety that for us has a very real cause. It isn’t disordered. It’s a defense mechanism, developed through “the association of certain stimuli with unpleasant consequences.”

Social anxiety is, therefore, not only “important for adaptive functioning” in autistic people, it’s essential.

Red Light, Green Light

Autistic social anxiety is not the same as neurotypical social anxiety. If a person with intact social communication abilities has severe anxiety about social situations, then they have a disorder because their fear is irrational. When a person with impaired social communication abilities has anxiety about social situations, they are like a poor swimmer who is anxious about boarding a boat. The perceived risk is real and rational.

If fear is a red light–a glowing “stop” signal in our brain–then anxiety is a yellow light. It’s the feeling that says, “slow down, caution, stop and pause a moment before continuing down this road.”

We should heed this feeling, not cure ourselves of it.

Appropriate vs. Inappropriate

But, some will say, too much social anxiety and you’ll become a recluse! A hermit! The little old lady shouting at those darn kids to get off her lawn!

Well, yes and no. First of all, allow me to horrify the more socially oriented among you by saying this: people aren’t all that interesting and the rewards of socializing are sometimes overrated. Consider the possibility that all of the following (fictional) people are meeting their needs for social interaction:

the person who lives alone, works at home and in the evening participates in role-playing games, an acting workshop and a drumming circle
the person who lives with a partner and has lunch once a week with a close friend
the person who attends classes full-time and prefers to socialize online in text-based formats outside of class hours
the person who chooses to spend time at home with family and only goes out for necessary errands or events
the person who works around people all day and likes to spend their evenings alone

The social preferences of these people may differ from the majority of their peers, but they aren’t exactly in Grey Gardens territory.

Being anxious about socializing is not the same as completely avoiding social situations. It’s possible to manage social anxiety in the same way we manage anxiety about other things. Someone–NT or autistic–might feel anxious about starting a new job, but that doesn’t mean they won’t do it. Most people have strategies for managing anxiety and autistic people are no different.

What is different is that our social anxiety is automatically pathologized and then “treated” with therapy or medication. We’re told that our fear is irrational and we need to change the way we “think about” social interaction. We’re told that if we just “relax a little” we’ll find social interaction much more enjoyable.

What would be far more helpful is to acknowledge our anxiety as valid and support our right to socialize at our preferred level, in our preferred ways, without being stigmatized for it.

What Anxiety Tells Us

So how does social anxiety keep us safe?

First there is the obvious example: when you have difficulty interpreting nonverbal cues, it can be hard to know when another person is a threat. This can be especially true for autistic women and girls, increasing our chances of becoming the target of sexual assault, sexual abuse or domestic violence. The autistic woman who feels anxious about dating, intimate relationships or venturing into unfamiliar situations has good reason to–the statistics for violence against autistic women are alarming.

Autistic people are also often victims of bullying. The autistic boy or girl who is anxious about recess or the school bus has a large databank of negative interactions feeding that anxiety. Their anxiety tells them that unstructured activities with limited adult supervision are a potential danger zone.

Those are both reasonable examples, right? But what about the anxiety-inducing holiday party, trip to the mall, or vacation? Surely that’s irrational?

Not if you’re forced to think about every social activity in terms of cost. There are many analogies for this concept: spoon theory and the social cup vs. bucket analogy are the most popular. I’ll spare you a new analogy and give you an example instead.

Last spring my nephew and his wife came to visit for a long weekend. He’s one of my favorite nephews and I was looking forward to meeting his new wife. Still, I was anxious. Having two additional people in the house for three days would mean a disrupted schedule, unfamiliar noises and smells, a loss of my precious alone time and lots and lots of talking.

The Scientist and I came up with a schedule–scheduling is essential for me to get through three days of company–and then I set about thinking of ways to conserve my resources. I volunteered to drive because I find it relaxing. We scheduled downtime for me on Saturday afternoon while everyone else went out. I suggested we visit a historical site that I knew well, because it would mean a familiar environment plus the chance to infodump in a socially acceptable way.

We had a great time. They enjoyed the places we visited and the meals I cooked. We laughed a lot and had meaningful conversations. Things couldn’t have gone better. And still, Saturday night as everyone sat around the dinner table talking for hours after the meal was finished, I found myself shaking uncontrollably.

Even with all of my planning, even though I was enjoying myself, the day’s socializing had overwhelmed me. I knew it was coming, had felt myself shutting down as the evening wore on, but I ignored the warning signs. I didn’t want to end a great day on a bad note.

Unfortunately, it’s not about what I want. Social interaction has a real physical cost for autistic people. If I don’t listen to the voice of caution in my head and limit my interactions, my body will eventually take over and limit them for me.

When I’m in a situation where I feel comfortable, I can handle longer interactions. If I have to deal with unstructured activities, unfamiliar places, new people, rapid shifts in conversation partners or topics, or any of a long list of other things I find challenging, I’ll hit my limit sooner. An hour might be all I can deal with before I start feeling a strong need to escape.

Since being diagnosed with Asperger’s, I’m getting better at “reading” myself. The anxiety, the need to escape, the withdrawal that precedes the uncontrollable shaking–these are not things I need to be cured of. They are signs that I need to take care–yellow lights to be heeded–and I’m learning to listen to them.

Emotions, Health

Anatomy of a Meltdown

December 13, 2012 musingsofanaspie 142 Comments

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:

Space
Time
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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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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Growing Up Aspie, Health, Sensory Processing

Wide Awake: Autism, Insomnia and Me

November 29, 2012 musingsofanaspie 81 Comments

Like a lot of what I experience because of Asperger’s, until I started reading about insomnia, I didn’t realize that I’ve suffered from it on and off since I was a child.

Apparently, I’ve always had slightly abnormal sleeping habits. Sometimes it takes me a long time to fall asleep. Some nights I wake up a half dozen times; others (like today) I wake up at 3:00 AM feeling like it’s the middle of the afternoon. I can hit the ground running at 5:00 AM with an energy level that seems to piss people off.

In more technical terms, I have classic signs of autism-related insomnia:

prolonged sleep latency (time to fall asleep)
reduced sleep efficiency (decreased time asleep/time in bed)
reduced total sleep time
reduced sleep duration and continuity
night awakening exemplified by of long periods of time awake¹

I was shocked to learn that the prevalence of insomnia in children with ASD is 40% to 80%.² When you read about typical symptoms of autism and Asperger’s, sleep disturbance is not only missing from the core list of diagnostic symptoms, it’s rarely mentioned at all.

What my clock read this morning when I woke up.

A Budding Insomniac

My parents adopted a benign disinterest when it came to my sleep habits. They put me in bed at eight o’clock and the rest was up to me. I’d make multiple trips to the bathroom for a drink of water or to take one last pee (three or four or more times) but as long I didn’t bother my parents, they didn’t make a fuss about whether I was actually sleeping.

I had a nightlight beside my bed and most nights I’d hang over the side of the bed, reading until I felt tired. Before I was old enough to read, I would sit at the top of the steps and listen to what was going on downstairs to pass the time until I felt tired. In my teens I got a portable black and white TV for my birthday and I’d watch TV, using earphones so I wouldn’t get caught.

I think my parents knew about these habits–they occasionally pointed out that I’d go blind if I kept up my “reading in the dark” and more than once they shooed me back to bed from the bottom of the steps. On an average night, though, my parents’ bedside lights had been turned off by the time I made my last couple of trips to the bathroom.

When I woke in the night, which happened most nights, I’d call my dad and he would lie down in my bed while I went to the bathroom. I’m not sure what purpose this served except that I remember being a little afraid of the dark after walking into a wall and getting a bloody nose one night. I guess it was reassuring to know that if I did it again, at least my dad would be there to hand me some tissues.

My parents’ laissez-faire attitude toward my sleep problems taught me two things: (1) it’s not a big deal and (2) you’re responsible for putting yourself to sleep. The second part sounds a bit harsh, but because they never made an issue out of when or how much I was actually sleeping, it never felt that way. A little lonely perhaps, but I also liked those few hours at night when everyone else was asleep and the house was quiet. I got to indulge in my special interest (reading) and that was calming, which eventually lulled me to sleep.

Granted, if I’d been destructive or intent on going out to roam the neighborhood, this strategy wouldn’t have worked.

What Works for Me

As an adult I’ve learned that having the right sleep conditions makes a big difference for me. Some things that help me sleep better:

1. Plenty of exercise during the day. I need to be physically tired to sleep well so getting in at least an hour of walking, running and/or swimming every day is essential.

2. Heavy blankets. The slight pressure of a heavy comforter and blankets relaxes me. If I only have a sheet or light blanket, I’ll wake up repeatedly.

3. A cool room. I tend to overheat when I sleep. I’m not sure if this is Aspergers-related, but if the room is even slightly warm, I’ll wake up sweating.

4. Comfortable clothes. As a kid I wore snug fitting pajamas. I still can’t sleep in anything that’s too loose, like a nightgown, because I end up feeling like it’s strangling me the first time I turn over.

5. Familiar surroundings. It’s much easier to relax when I’m in a familiar environment. If I go on vacation or move to a new place, it takes me a few days to “learn” to sleep there because my brain needs to catalog the unfamiliar sounds and smells.

6. A quiet environment or consistent noise. I need either total quiet or a consistent natural noise (wind, waves, steady traffic) to fall asleep. Something like intermittent voices, a radio or a television–even one playing in the apartment above or below me or in an adjoining hotel room–will keep me awake until it stops. In fact, I’ll usually be awake long after it stops because of the anxiety it generates.

7. A dark room. I can’t sleep unless the room is completely dark. Light shining in my room through a window or under/around a door will keep me up. The flashing light of a muted television drives me nuts.

8. Reading (or enjoying a special interest) before bed. Reading has been one of my special interests since childhood. Like any special interest, it distracts and calms me. I think it’s also become a sleep cue. When I pick up a book in bed, my brain starts sending out sleep signals to my body. It usually only takes 15-20 minutes of reading before I start to feel myself drifting off.

9. A light dinner and no snacks after dinner. I fall asleep faster and sleep better if I have a low-fat, low-sugar dinner and give myself at least a few hours to digest it before going to bed

Those are the things that I’ve discovered over the years work for me. I’d love to hear from others on the spectrum who’ve discovered tricks for getting to sleep or staying asleep.

Recently I was talking with my daughter about my sleep habits and she asked why I don’t try to resolve my insomnia. I told her that it doesn’t bother me–I use my middle-of-the-night time to read or think–or impact my daily life. Her response was, “Maybe it does impact you and you don’t realize it because you’re so used to it.” There’s a lot of wisdom in that statement. Something to think about, for sure.

(Unless you’re a geek like me, you can safely stop reading here.)

A Little Geekery About Melatonin and Circadian Rhythm to Wrap this Up

There are a few theories about why so many people with ASD have sleep problems. One of the most prevalent theories points to abnormal melatonin levels.² Consequently, many children with ASD-related insomnia are given melatonin to induce more regular sleep habits. From what I’ve read anecdotally, this works well for many children and results in unacceptable side effects for some.

Another, lesser-known theory that caught my attention suggests that neurodevelopmental disorders increase the likelihood of sleep disturbances due to an inability to perceive and interpret sleep-related environmental cues.³ This is obviously far more difficult to measure and quantify in a lab than melatonin levels (which are easily measured in blood plasma). But it got me digging for more details because so much of my Asperger’s seems to trace back to the dysfunctional processing and filtering of my environment.

Caution: amateur scientist at play: I learned that our circadian rhythm (the internal clock responsible for, among other things, when we sleep) relies on external inputs to regulate sleep. The natural light-darkness cycle is the primary input, but our circadian rhythm can also be affected by our rest/activity schedule, mealtimes and social interaction. All of these inputs pass through a “central pacemaker” in the brain, which “outputs” various hormones that act as signals to the rest of the body and regulate the sleep-wake cycle.

Here’s a nifty graphic showing the “input” and “outputs” of the human circadian system⁴:

From “Exercise and melatonin in humans: reciprocal benefits” in Journal of Pineal Research by Escames et al.

The really interesting part is that the body can’t maintain an accurate 24-hour circadian rhythm without the input of environmental cues. Our natural circadian rhythm, in the absence of environmental cues, is 25-27 hours. Whoa!

Perhaps dysfunctional processing of one or more circadian inputs throws off the circadian rhythm, leading to the abnormal levels of melatonin (a key output) found in many people with ASD.

The dysfunctional processing theory would explain why many of the things I do to help me sleep better qualify as circadian inputs: exercise, consistent activity cues around bedtime, no eating close to bedtime, and a dark room. Over the years I’ve developed inputs that tell my body loud and clear: calm down and go to sleep.

It doesn’t always work but I have a feeling things could be a lot worse.

References:

¹Goldman, Suzanne et al. “Parental Sleep Concerns in Autism Spectrum Disorders: Variations from Childhood to Adolescence” J. Autism Dev Disord, 2012, (42) 531-538.

²Souders MC; Mason TBA; Valladares O; Bucan M; Levy SE; Mandell DS; Weaver TE; Pinto-Martin D. Sleep behaviors and sleep quality in children with autism spectrum disorders. SLEEP 2009;32(12):1566-1578.

³Williams, P. Gail et al. “Sleep problems in children with autism” J. Sleep Res. (2004) 13, 265–268.

⁴Escames, G., Ozturk, G., Baño-Otálora, B., Pozo, M. J., Madrid, J. A., Reiter, R. J., Serrano, E., Concepción, M. and Acuña-Castroviejo, D. (2012), Exercise and melatonin in humans: reciprocal benefits. Journal of Pineal Research, 52: 1–11. doi: 10.1111/j.1600-079X.2011.00924.x

Health

Nightmares: An Experiment in Anxiety Management

November 24, 2012 musingsofanaspie 25 Comments

Warning: This contains some nongraphic descriptions of violent/disturbing nightmares.

I have a lot of nightmares. If the statistics at WebMD are correct, I fall into the 2-8% of the adult population that has nightmares more than once a month. I’d love to know the percentage of people who have nightmares more than once a week. I bet that would make me feel really special.

Lately, though, I’m getting fed up with the nightmares. I’m ready to get myself into the 90+ percent of people who don’t regularly dream about being chased and assaulted.

Locating the Source of the Problem

Recently I began to suspect that my nightmares were related to my Asperger’s. Since finding out that I’m an aspie, this has been my default explanation for anything out of the ordinary.

Some digging through the PubMed database failed to turn up any research strongly linking nightmares and autism. Autistic kids are known to have a very high incidence of sleep disorders (look for a separate post on this next week). Some studies reported that as many as 80% of children with ASD have some form of insomnia. But nightmares haven’t been strongly linked to autism in children and, not surprisingly, there were no studies on sleep disorders in autistic adults.

My next stop was Google. If Asperger’s wasn’t to blame, I needed to find a likely suspect, and where better to hunt for clues than the internet, right?

Visits to WebMD and the International Association for the Study of Dreams turned up good background information about adult nightmares. I scanned through the common causes: medication or withdrawal from medication/alcohol, late-night snacking (because it increases metabolism), a traumatic event, PTSD, anxiety, stress, depression.

Aha! There it was. Anxiety. Asperger’s was to blame after all.

Sort of.

Connecting the Dots

Since I’ve been paying closer attention, I’ve noticed that my nightmares fall into two categories: violent or rage-filled.

The violent nightmares are closer to what most people think of when they think nightmare: being chased, being attacked, being seriously injured. The threatening person (or people) is always a stranger. The dreams used to end in me being seriously injured or nearly dying. A few years ago they shifted. Now the violent dreams almost always end with me seriously injuring or killing the attacker(s). If this sounds like an improvement, trust me, it’s not.

The rage-filled nightmares are characterized by me getting extremely angry with someone I know and blowing up at them. I’m not the kind of person who screams and rages at people in my waking life, so doing it in a dream is strange and disturbing. The rage feels uncontrollable and far more extreme than anything I’ve ever experienced in a sustained way while awake. It feels like I’ve snapped.

mirror — This work is licensed under a Creative Commons Attribution-NonCommercial-ShareAlike 2.5 License.

Over time, I’ve noticed a pattern in when I have nightmares. I can go weeks without a bad dream and then I’ll have a string of nights filled with long vivid nightmares.

The trigger for each of the types is specific, too. The violent nightmares usually follow a day where I’ve had a frustrating social encounter with a stranger or acquaintance–something that’s left me feeling tongue-tied, inadequate or embarrassed. The rage-filled nightmares usually follow an unpleasant interaction with someone I know. Often that person will be the target of the rage in the dream.

Armed with this analysis, I went off in search of remedies.

A Possible Solution

One of the most common suggestions I found for reducing nightmares was journaling. I’ve tried journaling in the past, unsuccessfully, because part of my brain spends the whole time going “why are we writing this if no one is going to read it?” But the underlying principle of using journaling to process my anxiety makes sense.

My hypothesis about my nightmares: When a trigger event occurs, I’m not processing the feelings associated with it. The lack of processing in my conscious mind is forcing my subconscious to process the feelings, resulting in the unpleasant dreams.

So here is my Aspergarian solution: a spreadsheet. I’m going to track suspected trigger events and nightmares–along with a couple of other variables, like hormonal fluctuations–to see if there’s any relationship between the two.

Ideally, I’d also like to recognize triggering events and try to conscious process the feelings associated with them, no matter how unpleasant that might be. Avoiding them obviously isn’t working. Maybe making a deliberate attempt to look at the triggering situation, acknowledge what I’m feeling and then tell myself that it’s okay to feel that way will diffuse the power of the triggering events and lessen the frequency of the nightmares.

I’ll be back in a few months with a post about how this works.

Health

Growing Older on the Autism Spectrum

September 14, 2012 musingsofanaspie 26 Comments

What does it mean to grow older on the spectrum?

Thanks to my Aspergarian nature, I don’t feel middle-aged but my body often tells me otherwise. My hair is going steadily gray and I’ve got the beginnings of arthritis in my hands. My joints pop and crack after I’ve been sitting too long. I’m in denial about my need for reading glasses. Pretty standard growing older stuff, whether you’re on the spectrum or not.

It’s the nonstandard stuff I’ve been . . .

. . . worrying about?

Not quite. I don’t worry about much and certainly not the distant future.

. . . afraid of?

Too strong a word.

. . . wondering about?

That sounds about right. I’m perpetually curious about all sorts of important and unimportant stuff. Before I started writing this, I searched for studies about Asperger’s and aging. Not surprisingly, I only found one and it wasn’t conclusive. (It did have one slightly alarming hypothesis about why autistic adults might not fare as well as neurotypical adults in old age. I’ve summarized it at the bottom of this piece if you’re curious.)

So, here are the things that I’m wondering about as I get older.

1. I wonder if I’ll be able to avoid a serious fall when I’m less physically resilient. I have a tendency to trip, fall and bump into things. No matter how vigilant I am, it happens. In the past month I’ve taken a couple of dives, one while running on a country road and one on the slippery locker room floor after swimming. The first got me a nasty case of road rash and the second resulted in a sore shoulder–relatively minor injuries considering how hard I went crashing to the ground both times. I doubt that will be the case if I take a similar fall a couple of decades from now.

2. I wonder if the recent decline in mental endurance is the beginning of a downward trajectory that will eventually limit my capacity to concentrate or work as I get older. Since hitting my forties, I’ve noticed that I tire more quickly during tasks requiring intense concentration. Powering through is no longer as appealing or even as feasible as it was 10 years ago. To compensate, I’ve been taking more breaks during the work day and giving myself permission to rest when I need to. I set smaller goals and reward myself for reaching them. I try not to have unrealistic expectations of what I can accomplish in a day.

3. I wonder if my decreasing willingness to endure things for the sake of pleasing people will turn into a liability. So far it’s been a positive development–increasingly allowing me to say no when I want or need to–but I can see how, if I’m not careful, I might wake one day to find I’ve become a crazy old cat lady.

4. I wonder if I’ll be able to keep up my exercise routine. Exercise keeps me sane. I need to run or swim regularly to burn off my excess energy and generate the cocktail of good chemicals that balance my brain. I figure this should be possible at least into my sixties, assuming I don’t seriously hurt myself first (see #1).

5. I wonder what life will be like if my husband dies before me. I enjoy his company in a way that I don’t enjoy being with anyone else. He and my daughter are the only two people I feel truly comfortable being around. I can’t imagine wanting to meet someone else. I’ve never lived alone. Whenever I read a new story about a married couple who’ve died together–in a plane crash or some other horrible accident–my first thought is always how lucky they were to have passed away together and avoided being widowed.

Wow, where to go from there? How about some positives?

As I get older, I’m softening up. I’m more patient with myself, more accepting of my faults, more compassionate. I’m less concerned with pleasing others, less worried about being accepted or thought of as “normal”.

Since learning about my Asperger’s, I feel like I’m actively healing the scared little kid that I was and integrating the fragmented parts of my self. I don’t think this would have been possible in my twenties or thirties.

In a lot of ways, I feel like time is my ally. I still have a lot of it left and I’m determined to make the best of it.

Geek Alert: What the Science Says about Aging on the Spectrum

A search for some scientific background about aging and autism turned up only one study, which evaluated people over 60 with autism (mostly with Asperger’s Syndrome) against similar age controls on a variety of cognitive domains. The results were mixed, but the researchers threw out an interesting hypothesis in their discussion. Adults (and adolescents) with ASD tend to use more and larger areas of their brain than neurotypical adults when performing certain cognitive (executive function) tasks. As we age, the NT brain makes a similar adaptation so that elderly NTs also use more and larger parts of their brain to compensate for the degeneration of the brain associated with aging.

The researchers suggested that a faster decline in certain cognitive areas among elderly people with ASD might be a result of the brain’s inability to recruit additional areas for cognitive processing, since this was adaptation that they’d already made earlier in life. On the positive side, there were some areas where adults with ASD performed better than controls. Obviously this is only one study with a relatively small sample size so it what it can tell us about aging on the spectrum is limited. Either way, I suspect we can learn more by listening to older adults on the spectrum than by cognitive testing in the lab. If you’re an autistic person in your fifties or sixties or older, I would love to hear from you in the comments.