Constantly Juggling: A Summary of My Current Health Situation

I am now at a point in my life where I can look back and safely say, "I am doing much, much better now than I ever have been in the past."  I'm mentally a lot more stable.  My anxiety is way down from what it used to be.  My dysthymia (low grade depression) is well under control.  My head is much clearer and less foggy than it's ever been in memory.  I may not be able to take on the world single-handedly, but as things go, this is the best it's probably ever been for me. 

This success is due to a whole lot of things, which I thought I might as well ennumerate and explain, given that it might help you find something to try for yourself/your child/your patient. Keep in mind that I have to do all of these things, or my mental and physical health suffer.  It ends up feeling like a juggling act some days, with me as the main and only performer.

1.  Supplements (Vitamins, Brain Chemicals, and Detoxifiers, oh my)

This was a big one, which is why it's first.  My LENS-doctor has a master's degree in nutrition, so under her guidance I had various blood tests done.  They showed that I was severely deficient in vitamin D, zinc, and iron.   Those were just some basic tests, but I had to ask for them from my primary care practitioner specifically, and they had to be billed under my other diagnoses (dysthymia, unexplained weight gain, chronic fatigue...) to get them to go through.  

So naturally, I now take supplements for vitamin D, zinc, and iron.  The vitamin D one also contains vitamin K1 and K2, which help with absorption.  I also take a broad base multivitamin, and magnesium (which has a calming effect and is particularly helpful for autistic people).  Those are all the vitamins.  Adding those to my day has made me much more energetic in the mornings, less foggy, and less achey.  

Next are the brain chemicals in pill form.  There are two of these. First is GABA, which is a neurotransmitter and is responsible for calming the brain.  Human brains naturally make this neurotransmitter, but not necessarily enough of it for stable functioning.  The second brain chemical pill is melatonin.  I have trouble falling asleep and staying asleep, so by adding some extra melatonin, which is the brain chemical that induces sleepiness, I can manage that issue without issue. 

Last is the detoxifier, which is a new player on the scene but has demonstrated its usefulness so impressively that I have nothing bad to say about it.  The substance is called N-Acetyl-L-Cysteine (NAC), and it was originally recommended to me to ward off the ill effects of mold.  If I'm exposed to mold, my brain goes foggy, my depression ramps up, and I get snappish and anxious.  NAC binds itself to the mold spores and such in my system, and then flushes itself and the mold out.  We tested its efficiency when I visited my inlaws' 200 year old, mold-ridden house.  In their defense, it's really hard to keep something that old in sparkling clean, flawless condition.  

The results were very impressive.  Not only was I able to not be a depressed grump on the trip, I was even able to hold a conversation over a long period of time and handle the various oddnesses of not being in my own home with my own things and patterns.  This led my doctor and me to try it outside of moldy environments, and I've found it's shifted my mood climate from "vaguely grumpy" to "slightly positive."  For someone diagnosed with dysthymia, this is basically a godsend.  

The supplements brand I use for most of my vitamins and such is Designs for Health.  Their stuff is more expensive than the grocery store options, but it's also purer and far better formulated for a sensitive system like mine.  Sometimes, you get what you pay for.  With this brand, you do.  

Something to keep in mind when considering supplementation for helping autistic people is that people's biologies vary.  I seem to absorb iron, vitamin D, and zinc very poorly, to the point where simply adding foods rich in those nutrients would not help.  But not everyone is just like me.  You should definitely consult with a nutrition specialist, and consider blood tests, before starting on these.  

2. LENS

I think I used to define LENS with every Legwork and Life entry in the past, when they were called LENS and Life.  I've since quit doing so, and now I occasionally get asked what it is.  LENS is short for Low Energy Neurofeedback System.  It is, as the name suggests, a form of neurofeedback.  

If that's gobbledygook to you, that's okay.  Neurofeedback is a therapy that involves tracking your brain waves via electrodes.  There's active neurofeedback, where you have a screen in front of you and are trying to train yourself to do things with your brain waves as they're displayed in real time.  And there's passive neurofeedback, where you don't try to achieve anything, but observe effects during and after the therapy.

LENS is a passive neurofeedback technique.  In a typical session, I sit in a comfy chair.  Three electrodes are attached to me: two to my ears, to help stabilize the signal, and one to whatever part of my brain we're measuring and then poking.  LENS involves measuring and then slightly modifying brainwaves.  The theory is that by doing so, we're strengthening weak brain connections and weakening connections that are too strong, resulting in a brain that communicates much better, and therefore functions better.  Over the course of two and a half years, I can attest to its effectiveness.  It is now much easier to smile, to work with my emotions, and to adjust to changes in my daily routine.

LENS is a therapy that can be used on a variety of brain conditions and mental illnesses, from autism to brain injuries to depression.  It's most impressively effective with head injuries, because the patterns it's trying to change are relatively new ones.  On conditions like autism, or my decades-old dysthymia, the results take a bit longer to show themselves.  On the bright side, its success rate is over 75%.  

My personal LENS practitioner is Dr. Nicole Beurkens, who also has degrees in special education, nutrition, and clinical psychology.  I highly recommend her.  There are other LENS practitioners across the country and even across the globe.  If you're not in the Michigan, but are of the US, you can find a different practitioner here.

3. Diet Changes and Probiotics

Of course it came to this.  A lot of the food sold in grocery stores is junk, or full of junk.  Full of sugar, high fructose corn syrup, empty calories... I'm sure you've heard it all before.  Of course we all try to eat healthy, with lots of whole grains, fruits, and vegetables, and that alone is pretty hard sometimes, right?

Yeah.... so, it gets worse.  Did you know that dozens of chemicals, including various food colorings, are banned in Europe and Asia, but not in the US?  Some prime offenders are Red Dye No. 40, Yellow Dye No. 5, and Yellow Dye No 6.  So I have to avoid most artificially colored foods, which means saying goodbye to a lot of childhood favorite snacks, as well as some chips, pastas, and other colored foods.  

Still with me?  I am also avoiding most dairy products at this point.  Butter is still available to me, but cow milk, cheese, and standard ice cream are barred.  Why?  Well, there some evidence that dairy has detrimental effects on the intestinal tract, and that's especially true to autistic people.  On the suggestion of my doctor, I went dairy-free for a couple weeks, and then had cheese and a glass of milk.  The results were very enlightening.  I went from a neutral mood to an anxious, depression, snappish person in less than an hour. I can't summarize the science of why this works, but I'm not going to argue with my own personal experience.  

My doctor also suggested trying a gluten-free diet, which I am presently pretending I didn't hear because it's already hard enough to find things to eat when I travel or visit with other people, let alone adding that factor in.  Unfortunately, the same evidence that suggests avoiding dairy is good for autistic people also suggests that going gluten-free is a good plan, for many of the same reasons.  Arrrrrrrgh.  

On a happier note, I do at least have some help with keeping my gut in good shape and able to do its job.  Twice per week, I take probiotics.  I have two different types, which cover most of the common good bacteria that should be found in your gut.  For a system as sensitive to changes as mine, it's a good practice to routinely prop it up.  I use Theralac and TruBifido, both by Master Supplements.  These are the type you have to keep cold.

4. Exercise

Yeah, I know, duh, of course exercise is good for you.  It's the most cliched sentiment in modern health.  Annoyingly, it's cliched for a reason.  I won't go into detail about all the regular reasons a person should exercise, like weight loss, muscle and bone fitness, skin health, heart health, and various disease chance reductions. You've heard all that over and over, to the point where you pretty much just tune it out.

Instead, I'd like to highlight what it's specifically done for me.  Some background: I hate exercise.  I was bad at gym class in school.  I had poor hand-eye coordination and pretty poor gross (full body) coordination as well.  I was not fast.  These things do not a sports star make.  I learned to hate the mile run, the yearly fitness tests, the mandatory participation in sports, everything.  

So when it came to picking up any form of standard exercise, like sports, or jogging, it was, suffice it to say, an uphill battle.  I found I needed to distract my brain from the exercise, or I would become sulky and anxious in short order.  

In college, I learned that I could do my homework while using the recumbent bicycle machine.  That was very satisfying, because it was killing two birds with one stone, and due to my particular genetic makeup, I can pretty much do low-intensity bicycling for hours.  I also re-discovered the video game called Dance Dance Revolution in college.  As a video game whose purpose was to get you to step or jump along to music on an exercise pad, it was sufficiently distracting and entertaining that I didn't mind the exercise component so much.  

So what did those get me?  Well, I noticed that after exercising, I seemed calmer, as if burning the energy in those activities somehow took it away from my brain's ability to be anxious.  I built muscle, of course, and that's helpful for lifting furniture and moving around.  But it also factors into how many calories you burn every day.  The more muscle you have, the more calories you burn... simply by existing.  Good times.  Extremely valuable for someone with a consistent weight problem and an anxiety disorder that never seemed to quit. 

There are a lot of different kinds of exercise out there, and not all of them are immediately thought of when the word "exercise" is mentioned.  Getting a job that involves a lot of movement, for example, has some of the same benefits as targeted exercise.  You can lift weights in the gym, or lift children on the playground.  You can go running outdoors, or use a treadmill at home.  You can join a local sports team for almost any game under the sun, including Ultimate Frisbee, fencing, and archery. 

5. Chiropractic Care 

Seems like a weird one to have on this list, doesn't it?  Usually you just go to the chiropractor if you have back pain, especially if it's related to a work accident.  What does it have to do with autism?  

Well, plenty, in some cases.  Your spine isn't just bones that need realignment.  It's also got the spinal cord woven delicately through those bones.  I tend to think of the spinal cord like a phone cord or a USB cord.  If it's frayed, or the cat's gnawed on it, or it's being pinched in places, it doesn't work very well.  The signals get muddled, messed up, or lost entirely.  

Headaches can ensue.  Intestinal distress can ensue.  Over- and under-sensitivities can ensue.  Because the spine is the main communication line between the brain and the rest of the body, anything that mucks it up can muck up a lot of things in the body.  

I started getting chiropractic care because I had tension headaches.  As a child I had very poor posture, and no amount of pointing it out or chastising me for it could change that.  It was tied in with my self-esteem, and the results were plain enough.  Sore knees, bad headaches (but not migraines) every week, and more if I was under a lot of stress. 

About a year of chiropractic care later, and I no longer have tension headaches.  In fact, I rarely get headaches at all now.  Due to getting their help, I've also changed out my pillow and raised my computer screens so that I look straight ahead rather than craning my neck down, which helps train me not to hunch. 

I can't personally speak to the other potential benefits I've listed, but I've certainly heard enough stories of allergies reversed, and there's at least one chiropractic center in my area that specializes specifically in helping people with autism.  

Afterword: Cured?

A lot of books that talk about these kinds of therapies for autism also like to use the words "cure," "restoration," "reclamation," and "healing," and make the implication that you can make your child's autism go away.  This is somewhat of a fabrication, and somewhat not.  The definition of autism is that there isn't a single definition of autism.  

I presently live independently.  I drive my own car.  I can make eye contact with a lot less effort and suffering than I used to be able to, and I can smile for a camera with relative ease.  I hold friendships with greater ease than I used to, and spend less time obsessing about small details and living in constant anxiety.  I struggle less with social interactions, and am much more flexible about my life and schedule. 

If I were to retake the psychological tests I took seven years ago, I can honestly say I would probably score very differently now.  I don't know whether I would still "score" as autistic.  Does that mean I'm not autistic?  

To some biomedical practitioners, the answer would be yes.  They see autism as strictly a medical disability, a collection of gut disorders, allergies, immune system problems, toxicity buildups, and other things.  Fix all those things, and now your kid isn't autistic any more.  Pat yourself on the back, keep up those new routines, and you've solved the problem.

I understand that mentality, but it misses the fact that autism does not necessarily involve that collection of medical problems.  I also come at the issue from the neurodiversity philosophy, which says, in conjunction with studies involving brain scans, that autism is also (or debatably, only) a brain condition.  My brain is actually wired differently than most people's, and because of that, I think differently about things.  I do things in different ways than other people.  I react differently sometimes, too. 

My perspective is so alien and so different from most people's, that I had to actually teach myself, across a decade and a half, how to get along with people effectively and efficiently.  I had to learn what small talk was for, and how to do it.  What things to say to people when someone they love has died.  When to not say anything and just be there.  How to recognize when people are getting bored of a subject.  Most of all, I had to spend a lot of time trying to understand how most people think, so I could see things from their perspective.  

Am I "cured?"  No, I don't think so.  My suffering is much much less.  I am less disabled in my day-to-day life.  But I am still autistic.  My thought process is still very different than others'.  I see things differently.  I do things differently.  In those ways, I am still different, and the word that describes that is "autism."  

So no, I am not cured.  In the sense I've explained it, I don't think a cure is even possible, and definitely not desirable.  I would cease to be who I am, if you ripped the autism out of me.  I am, however, much happier, and definitely less disabled now than I was five years ago.