Medication is often a difficult issue for people on the spectrum. Erika Hammerschmidt has been on medication for quite some time. Unmedicated recounts some of her experiences with medication, what it does and doesn’t do for her, and how she manages when she doesn’t take it.

The following article is the second in a series of three, excerpted from the book “Born on the Wrong Planet, Second Edition” By Erika Hammerschmidt. ISBN 09748570-6-8.

When she was very young, Erika Hammerschmidt was diagnosed with with Asperger’s ADD, ADHD, Tourette’s and OCD. Ms. Hammerschmidt speaks three languages, is a graduate of Augsburg College in Minneapolis, Minnesota, and has studied all over the world. This and all other excerpts are copyright (c) 2005 by Tyborne Hill Publishers LLC, Palo Alto, California. The entire book is available in paper from Tyborne Hill www.tybornehill.com, at Amazon.com, or and Barnes and Noble.com. Or at any bookstore. This article is used by permission. Reprint permission is available from www.tybornehill.com.

Unmedicated

I take three pills in the morning and two in the evening. Of the morning pills, one is to keep me awake and help me pay attention. One is to stop panic attacks, one is to keep me from being hyperactive and impulsive, and twitching and fidgeting with Tourette’s tics.

One of the evening pills is a second dose of the pill for tics and impulses, the other is to help me sleep. Without the sleeping pill I stay awake until noon the next day. I’ve never learned to put myself to sleep by imagining dull, repetitive things like sheep jumping over a fence, because for me they aren’t dull and repetitive. When I picture something happening in my head, it happens strangely, especially when I’m tired. The sheep are all different colors, or they wear swimsuits and sunglasses. They don’t clear the fence; they hit their heads on it, or scrape their bellies and bleed.

If my friends and family were asked what my medicines were for, they would probably think first of my attacks of impulsive behavior. That’s the first thing that starts to show when I am late to medicate myself. When I start giggling crazily and saying irrelevant, ludicrous things, my loved ones turn to me and say, “Erika, have you had your meds?”

Not long ago at a family gathering, I waited a few hours to take my pills, afraid that if I took them at the usual time I would fall asleep before it was time to go home. The result was insanity.

I became not just silly, but crude. I pinched people on the behinds. I made loud speculations about the sex lives of Star Trek characters.

“On my next trip,” I shouted, “I want to go to Saginaw Bay! Because if the Great Lakes are a picture of a wolf, and Lake Superior is his head, and Lake Michigan is his paw, and Lake Huron is his body, do you know what part of him Saginaw Bay is?”

My family, accustomed to such things, ignored me until I tired myself out, went into a corner by myself, read a book, and calmed down.

That’s a fairly typical episode, although they are not always in such bad taste. Sometimes I just get mildly silly, within the range that friends can laugh at pleasantly.

There have also been worse episodes. One semester I took an apple from a student and threw it at the wall; picked up a chair and threatened another student with it; wrapped myself around a third student and started mauling his neck in front of the entire class and the professor; and barricaded myself in the computer room, shouting to people who asked if I needed anything, “Send Kevin in here with a leather bodice and a whip! I require it to survive!”

Finally the madness built so high it broke over the rocks of my own shock and outrage, and I ran home before I could do anything more. In the days afterwards, I was miserably ashamed and depressed, and completely avoided contact with other people.

Such severe outbursts happen less often now than they used to. Of my memories of grade school, over half are memories of being punished for going crazy. Back then I made fewer obscene comments, but I chased and kissed other children all the time, not caring what gender they were or if I even liked them. I mooned people. Once I went through the hallways seizing male students by the arm at random and saying, “Darling, where shall we go on our honeymoon?” The most common answer was “What the f-k?” I wrote their responses in a notebook, and told people I was doing a scientific study.

People are more understanding now than they were when I was a kid. Teachers ask me what the problem is and how they can help, rather than punishing me. Friends are uncomfortable during my insanity, but later when I say I’m sorry, they accept my apology and seem more concerned than offended. Apparently adults can get away with more than children can.

During the attacks of hyperactivity, I crave attention and laughter from other people, but if they do laugh, I get more hyperactive. My closest friends know that I calm down faster if I’m ignored. It also helps to go somewhere alone for a while and do something solitary like reading. Of course, the first thing to do is to take my pills.

Panic attacks usually start with a legitimate inconvenience. For example, something goes wrong with my computer, or the school bureaucracy is uncooperative with my attempts to pay tuition bills or sign up for a dorm.

However, it’s not always something that would get me truly upset at a good time. Once I had a panic attack when I couldn’t get a menu on my computer to be in the part of the screen where I wanted it. Sometimes small things trigger panic attacks, and sometimes they don’t. I don’t know what makes the difference, but pills have a big part in it.

When a panic attack starts my muscles tense up and my breathing becomes fast and tight. Those are typical symptoms of anxiety, but for me, they are a warning sign; I know that soon things will get worse. My breathing rate becomes faster, and it can accelerate so much that it’s hard to stop. I start to feel a tingling around the corners of my face, and people tell me that I’ll faint if I don’t calm down. But if I try to breathe more slowly, I feel that I’m not getting enough air and the panic builds higher.

I start crying uncontrollably. Despair sets in. I feel that everything’s going wrong, that nothing will ever work out, that the worst-case scenario will undoubtedly come to pass. Every time someone expresses a hope that something good may happen, or suggests how things might be made better, I come up with some reason why that couldn’t possibly work.

I become unreasonably angry, snapping at people who offer help. Then I swing abruptly into remorse, apologize, curse myself, and minutes later begin snapping again.

Even though I know that my panic is hurtful to others, I crave company, becoming still more depressed when people leave me. Then, once alone, silently I curse those people for not caring about me, not wanting to be with me.

I become sensory-defensive. Loud noises, bright lights, and strong smells raise my panic to unbearable levels. Although I don’t want to be alone, I can’t stand being touched, or even having other people too close to me. It feels like an invasion, like an attack. Sometimes my skin becomes so sensitive that physical contact is actually painful.

The feeling isn’t confined to people. There are times when I am so sensitive that even wearing clothing hurts, and there are times when I need my personal space so much that I can’t endure being in a small or cluttered room.

There’s no clear pattern to what will stop a panic attack. Sometimes, when the initial problem is resolved, the panic begins to wind down slowly. Sometimes it disappears unexpectedly, for no apparent reason. Sometimes I cry myself to sleep and wake up calmer.

As with the impulsive outbursts, though, there’s less chance of a panic attack beginning in the first place if I have taken my pills on time. If I haven’t, and one does start, the first remedy is to take them as soon as possible.

The tics involved with Tourette’s Syndrome are different for each person who has it. Some hit or throw things uncontrollably; some spit or grind their teeth or lick their lips; some yell out words, or repeat what they or other people have said.

I’ve had several different tics, usually not severe ones but enough to make life difficult. As a young child, I had one noticeable vocal tic. It was palilalia: repeating the beginnings of words and sentences several times before finishing them.

My motor tics were many and varied. I shifted my feet back and forth, over and over again, in a repeated pattern; I rubbed my hand briefly and repetitively at my head or my face or my arm; I sucked my thumb much longer than most children.

Now, as a young adult, I have milder tics. There is a distinctly “Touretty” pattern to the way I adjust my glasses and my hair. Sometimes I put the side of my finger to my nostrils and exhale sharply, or raise my upper lip until it rests almost against my nose and breathe on it.

Right now, lying on my stomach on my bed as I write, I am pushing my foot against the top of the footboard in such a way as to force it in between my toes. I have been doing this over and over again without thinking. As with any tic, I could control it for a while if I tried, but as soon as I stopped consciously thinking about controlling it, it would begin again.

A problematic urge is my habit of picking at my skin. I’m not sure if it’s a tic or part of my obsessive-compulsive disorder. It started with my discovery of pimples in adolescence. I have never been able to leave them alone, and now I don’t even wait for them to become visible. I go over my skin for a quarter-hour or more, usually the skin of my face or chest, squeezing at every tiny irregularity in case there might be a bit of pus or oil in it.

I pick those spots until they become scabs, I pick the scabs until they become scars, and then I open up the scars and start over again. I go through phases: sometimes my chest and my face get a chance to heal, sometimes I spend weeks looking as if I had chicken pox.

The tic that causes me the most problems lately is holding my breath. The urge is similar to the urge to yawn, and indeed the action is very much like a yawn: I lean back, stretch, and take a fast, deep breath. But I hold that breath much longer than the one taken in a regular yawn. So long, in fact, that I begin to lose consciousness.

It seldom gets to the point that I fall down. Usually I just become less aware of my surroundings until I have been breathing again for a while. People watching me usually don’t notice anything. Either I go very still, or start shifting slightly as though uncomfortable. My other tics become more severe during these fainting spells, and I may push at my glasses or my hair, or fidget with my feet more rapidly and energetically than usual.

The only thing sure to catch observers’ attention is the short, hard exhalation when I let out the breath. However, if people happen to ask me something before I fully come back to consciousness, they will certainly notice that I don’t reply, or I’ll murmur incoherently or answer inappropriately.

At a party, I was talking with my young cousins, and my cousin Peter said, “The best way to do a maze is to start at the end.”

For most mazes, this is true. I have done them that way many times, and I’ve occasionally tried the challenge of designing a maze that was as hard to go through backwards as forwards.

However, when I heard Peter’s comment, I was just coming out of a fainting spell, and somehow the phrase “start at the end” sounded like complete nonsense to me. I burst out laughing, thinking that he had said something ridiculous.

Another time, while having a fainting spell in biology class, I heard the professor end a sentence: “… it’s a useful ability for a mammal to have.”

I blurted out, “Why? Does it help make milk or something?”

The rest of the class laughed, and it wasn’t until I heard more of the discussion that I realized he had been talking about the ability to control bowel movements.

During these attacks, I can have any number of interesting sensations. My skin tingles and my vision is affected. Sometimes it just gets cloudy, and sometimes it goes black entirely. Sometimes my vision remains but I lose the ability to attach meaning to what I see, perceiving only colors and shapes.

Occasionally I have distinct hallucinations. Sometimes they are of things I have seen or thought about recently, like beads when I have been making bead jewelry, or flowers when I have been gardening. Sometimes they’re completely unexpected things, like a neon-colored, fuzzy cartoon bird, or a gray-green face covered with tentacles. Sometimes they’re just geometric patterns, complicated and multicolored.

One or more of my senses–hearing or smell, for example–may become less sensitive, or disappear for the interim. Or one or another of my senses might become more sensitive, so that I notice the rushing of water in a pipe in the wall, or the quiet ticking of a clock across the room, or the smell of my own sweat, none of which I would notice in full consciousness.

A limb might go limp and heavy for awhile. Sometimes one entire side of my body is affected, and I know for a moment what it might be like to be paralyzed on the right or the left. I might get an erroneous idea of what position my body is in; I may think that I’m sitting when I’m lying down, or that my hand is in my lap when it’s on my desk. Sometimes these thoughts even apply to my clothes. I believe for a moment that I’m wearing socks when I’m not, or that my shirt is on backwards when it’s on forwards.

All sorts of strange thoughts might come to me, not always related to my body. Sometimes I have déja vu. Sometimes I make a strange connection between an aspect of my fainting spell and a topic that has been on my mind. For example, I notice that I am breathing in a pattern of three short breaths at a time, and connect that to the fact that I am taking three classes each day that semester.

Often a nonspecific scenario comes into my head that has no connection to my own life. Someone wants something and cannot get it. Or, There are two ways to do something, and one of them is better than the other.

Sometimes, when I am having a panic attack, it ends during a fainting spell, or one that has ended begins again. Sometimes, I have inspirations.

Obviously, with so much going on in my mind, my fainting spells distract me from things that need my attention. They are most common when I am sitting still and not physically participating in anything, and so they frequently interrupt when I try to listen in class. On a bad day I miss 30 seconds of the lecture every two or three minutes. I don’t know how I continue to get good grades.

There was a phase some years ago when the spells frequently involved convulsions and loss of balance. My body would start jerking uncontrollably and I’d fall to the floor or ground. Sometimes I’d hit myself on things, getting painful bruises. Neurologists and cardiologists studied those fainting spells and found no explanation or treatment. Luckily, the phase ended by itself.

At the moment, the most troublesome part of fainting spells is the increased tic activity during them. Not only do I touch my hair and twitch my feet, I move air around in my mouth and respiratory passages in such a way that it goes up my salivary ducts and sinuses, causing sore cheeks and headaches.

Worst of all, I grind my teeth. Seeing how quickly I have worn through my first few protective retainers, I wonder how I am going to afford dentist bills if this goes on for the rest of my life.

I don’t know exactly how well the pills repress the breath-holding tic, but I am fairly sure it happens more when I take the pills late. I will continue trying to find a tic medication that controls the tics better.

At different times in my life I’ve taken different pills. At first it was only one kind; at other times it has been as many as seven or eight. My psychiatrist and parents have always come up with the ideas for what I will take, based on conversations with me and with each other.

I have no idea how any of the pills work. I’m the poet in my family, the dreamer, the artist, what my brother calls a “literature bum.” He is the math and science expert. The concepts of chemistry fascinate me, but whenever I’ve tried to study the details, I’ve gotten hopelessly confused.

Certainly, I have no understanding of how the chemicals in those particular medications affect the biology of my brain. I know myself as a person, not as a diagnosis. I don’t claim to comprehend the inner biological workings of my disabilities, only the effects they have on my life. I know that when I miss one of the pills, I can’t sleep at night; when I miss another, I get drowsy in the day and can’t pay attention; when I miss a different one, I have more panic attacks, and so on.

Sometimes I think that maybe I’ve gotten too used to taking the pills, too dependent on them. If I go two days without them, I have panic attacks in which I become so shaky that it’s like having convulsions. That never happened before I took the pills. But I was a small child when I started. My brain and my body have changed since then.

Of course I’d like to be able to live a happy life without medications. I will have to find a time when I have the freedom to risk inconvenient behavior changes, and the courage to risk the emotional trauma that would go with those changes. I would have to cut down slowly, over a long time, and be willing to stop cutting down if it didn’t work. I might do it, someday, but for now my pills are too helpful to give up.