Little Canaries

This is Little Canaries, a centralized web presence I created in response to the growing concern and curiosity about my son and his social, emotional and physical well-being.  Initially I designed the website to help answer questions from my friends and family about his wide array of treatments and interventions.  Today, I am hoping that the site will become a resource for confused and overwhelmed parents everywhere who desperately need someone (particularly a fellow parent) to organize all of this information in an approachable, empirical and manageable way.  With any luck, and a little help from my friends, this site will accomplish just that.

Why "Little Canaries"...

My family was born and raised in West Virginia, and we know quite a bit about coal mining.  In fact, I conducted my dissertation fieldwork in the coal fields of the southern part of the state, deep in the heart of Appalachia.  Historically, underground miners worked in the horrible damp, dark conditions of bituminous coal, with the danger of death or dismemberment always lurking behind every new wall they excavated.   The continued occupational exposure and respiration of excessive amounts of coal dust manifested as pneumoconiosis or silicosis, often referred to as "black lung."  In the early stages of the disease, there are no symptoms.  Later, miners will begin to notice a shortness of breath, then their bodies will initiate bouts of coughing in a futile attempt to remove the embedded silica and coal fibers from the lung tissue.  Later, every breath will become excruciatingly painful until finally the victim is permanently disabled and dies of suffocation.

Coal dust isn't the only scary part of mining coal.  The presence of methane, or C4 gas, is always a worry when digging into coal seams.  Methane is combustible between 5% and 15% of the air (2% - 5% when coal dust is present) and needs to be kept at a safe level, under 2%. Any more saturation in the air and it will burn with the slightest spark. Because methane is odorless, tasteless, and colorless, its presence in an underground mine cannot be detected without technology.  To prevent a catastrophe in contemporary mines, the face boss generally inspects the mine with a methanometer at the beginning of each shift to monitor methane levels. Long before this technology became available, however, a miner routinely took his own canary or other small animal underground into the mine with him. Anyone who has ever owned a pet canary knows that a canary is much more sensitive than your average bird, and would show his owner that methane levels were way too high for him to survive by, well, dying.

So, as you can see, these little canaries perform a very important job.  They are letting us know that something is wrong with the environment in which we are living; they tell us when it's not safe to breathe the air, drink the water, or eat the food. 

The premise of this website is that, metaphorically speaking, most children today are like your average bird: fun, energetic, and well-adjusted to the hodgepodge of chemical insults present in their environment.  Within this Gaussian population distribution, some children will be oblivious to environmental allergens, while others will sneeze and have watery eyes when the flowers and trees bloom, or when Uncle Joe adds yet another cat to his menagerie.  But on the whole, these kids tend to be pretty average birds.  And then there are the canaries.

Canaries respond in very different ways to the same environmental insults that have no effect on the average birds.  Our little canaries get sick.  Very sick.  When faced with an immune-provoking toxin, some children will reflux or vomit uncontrollably.  Others will begin to bleed from the inflammation in their intestines and refuse to eat any food at all.   Some will sneeze 24 hours a day, seven days a week.  Some will develop painful, oozing skin rashes that cover their entire body.  Still others will have high fevers, convulsions, night awakenings, and begin to engage in what appear to be bizarre rituals to ease the pain.  Some will stop talking, withdraw into their own world and give up.  Others will scream, screech or wail, day in and day out.   Up until about ten years ago, these relatively rare (5 children out of 10,000) "afflicted" children were sent to live out their lives inside the walls of an institution.  Today, one child out of every 166 children is "autistic," and most are treated with behavioral interventions to stem the troublesome screaming and self-mutilation.

I submit, as do many others who have experienced the onset of autism firsthand, that the panoply of behaviors called "autism" is not a syndrome or disorder at all.  Rather, the manifestation of autism (or "autistic-like" behaviors) is the end point of a long road of suffering; it's the last thing our little canaries can do to tell us that something terrible has happened to them and their immune systems are systematically going haywire.  Before they shut the world out to deal with the agony, our children are sending us a vivid warning about the myriad of biological, chemical, and environmental hazards to which they were exposed in infancy. 

About this site...

The notion of environmental insults leading to autism is not my own hypothesis, pipe dream, or wishful thinking on behalf of an exhausted parent of a special needs child.  I am, first and foremost, a scientist.  I have lived my entire life with logic as my map and intuition as my navigator.  I don't believe in false hope, hippy-dippy nature store remedies, miracle cures, or snake oil treatments from online vendors.  I strongly resent the suggestion from well-meaning people to implement treatments for autism spectrum disorder (ASD) that have not been empirically tested and proven effective by double-blind monitored trials.  These suggestions, while usually well-meaning, carry the hazard of sending me on the proverbial wild goose chase, to the detriment of my son's health.  My child is nobody's lab rat, so nothing that you find on this site will imply a "suggestion" or "so-and-so said that this worked..."  Rather, this site is for people like me, those parents who demand a logical and empirical explanation for what might have caused these problems and why a particular treatment or intervention might (or might not) work for their child.  It's great if an intervention worked for Sally down the street, but I have a strong compulsion to know why that worked.  In other words, parents should be asking questions like these:

No two children with autism have the same set of symptoms, but some generalizations can be made.  Children with autism have immune problems, some of which are profound and life-altering, including asthma, allergic rhinitis, anemia, thrombocytosis, eczema, etc.  Autistic children have problems communicating; some kids can't understand what you're saying to them, while other children know exactly what you're saying and can't get the words out to respond.  Autistic children also have gut issues.  Some have a variety of food allergies, others have reflux or intestinal inflammation and bleeding. 

The origins of these traits associated with what we call "autism" are multiple and controversial, but the information on this site is designed to help you as a parent to decipher which route to autism your little canary might have taken, and how to get him/her "out of the cage" and back onto the right road. 

BIG DISCLAIMER:  I'm not a doctor (at least not an M.D.), so by all means, be a responsible parent and DON'T take my word for it.  Everything I'm presenting on these pages is for your knowledge, so that you have a place to start.  I didn't have any idea what the latest treatments were when my son was going through this ordeal, so I saw a real need to make this a reality for other parents just starting on this difficult journey.  I've compiled several pages pertaining to the issues that I consider primary, with evidence from empirical studies to back up the information.  I'm not getting any money from anybody for this, so don't worry about endorsements, etc.  If you want to know what supplement Sally down the street is taking, walk over there and ask her.  If you want to know the reason Sally takes a supplement, walk down to the library and read the research journal articles I've cited here.

About Me...

By professional training, I am a professor of cultural anthropology specializing in economic anthropology, gender, class, ethnicity and dispute resolution.  I am also John's mommy and Dan's wife, so I spend most of my time trying to find some sort of balance among all of these different aspects of my life.  I have a sick child, so I'm not really a stay-at-home mom (I can't remember the last day that I actually "stayed at home" with John).  We spend our days going from one fun activity to another, but always with the central goal of ultimately finding a way to make him feel better.

There are so many websites available that post stories of parents and their children with autism that I thought it unnecessary to insist that everyone read about my baby John.  If, however, you would like to read John's story and see what inspired me to put this page together, by all means, please click here.

Contact Me...

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Last modified: 04/24/05