2:45pm September 8, 2014

An open letter to anti-vaxxers.

Dear anti-vaccine proponents:

Like most of you, I am an American from a generation that remembers vaccines as an unpleasant or even traumatic element of my doctor visits, but are too young, in to remember much about the childhood diseases prevented by vaccines.

My mother has poor eyesight. This is because of an extremely high fever she had during a rubella outbreak. She was lucky to get by with only her eyes affected. A close friend of mine who serves the role of ‘second mother’ to me, tells me of how much polio scared people. All the public swimming pools shut down at even the hint of a rumor that polio was around. Children in iron lungs were the lucky ones, children who died were the unlucky ones. The children in the iron lungs often went on to be amazing adult disability rights activists in iron lungs, like Ed Roberts. But they could have just as easily died, and most of them would have rather not had polio and the pain and suffering that went with it in the first place.

I’m not asking you to pity them. Pity is the last thing they ever wanted. I’m asking you to understand that people died, and people suffered, and that this suffering and death has been made unnecessary by vaccines. And that is the work you are trying to undo.

Also I have a beef with this on a personal level. I am autistic. I’m not just autistic, I have a condition called autistic catatonia. Autistic catatonia means that the motor, cognitive, and sensory aspects of autism have become progressively more pronounced for me over the years, rendering me in need of much more assistance to get through the day than I needed before.

Unlike many people would have you believe of me, I am not someone who believes autism causes no suffering. My sensory processing issues alone cause me pain and nausea on a regular basis. I am rarely able to speak, and during some medical emergencies I am too weak to type, either. This has put me in danger. I walk into traffic (and have been pulled out of the way of moving buses by total strangers) because I can’t perceive moving cars accurately. I have automatic, involuntary movements that have resulted in my opening car doors on the highway while the car is doing over 60 miles an hour, which scared all of us in the car including myself. I used to wake up screaming and scream myself hoarse throughout the morning. When I was a teenager, my father had to sleep outside my door in his running shoes because I would try to run out of the house at night and head-butt my way past him. I often had a catatonia-related problem where I’d run around the house until I fell over from exhaustion. And as of today, while I have mastered the art of controlling the worst of my behavior, I still need considerable assistance to get through every day. In fact, by definition, a person with autistic catatonia needs to have the following traits (highlighted are the ones especially requiring assistance):

Increased slowness affecting movements and verbal responses
Difficulty in initiating and completing actions
Increased reliance on physical or verbal prompting by others
Increased passivity and apparent lack of motivation

Other features include:

Reversal of day and night
Parkinsonian features: tremor, eye rolling, dystonia, odd stiff posture, freezing in postures, etc.
Excitement and agitation
Increase in repetitive ritualistic behavior

They noted that “In this study, a diagnosis of catatonia was given when exacerbation of certain features of behavior occurred in sufficient degree to interfere with movement and everyday functions of self-care, education, occupation, and leisure.”

So basically, this is not a diagnosis given out lightly. I have had symptoms of autistic catatonia since I was twelve, but I was only diagnosed when Wing and Shah’s paper came out when I was 19 or 20. My psychiatrist, who had known me since I was fourteen, diagnosed me immediately upon being faxed the Wing and Shah (2000) study.

But at any rate, my ability to care for myself is severely limited, and that has been the most obvious effect of autism for me. Not that I don’t have as many social problems as the next autistic person, they just aren’t my focus in life when I have visual processing problems so severe I am functionally blind in new locations, and when I need so much help just to get through the day. While I do not agree with the application of functioning levels to autistic people, I can say that none of my doctors has ever told me I am mildly affected by autism, and many of them have used terms like ‘severe’ to describe me. I would say that I am severely disabled, and autism is only one part of that picture.

But regardless of being autistic, regardless even of autistic catatonia, I would gladly endure even the worst aspects of being autistic, rather than go unvaccinated and contribute to the suffering and death of some of the most vulnerable populations: Infants, very young children, children with severe physical diseases, adults with severe physical diseases, and elderly people. I have heard anti-vaxxers express sentiments to the effect of, “That kind of person would have died anyway, we just have to accept that weaker people die of diseases. Maybe it’s better if they die and fail to pass their weak genes down to the rest of the population.” Not all anti-vaxxers believe that by a long shot, but having heard it from some even turns my stomach. Especially because I am one of those people who could die from a vaccine-preventable disease. I don’t think autism is caused by vaccines, but even if it were, autism would be so much worth the price of keeping people alive.

I have bronchiectasis. Most people in the USA have never heard of bronchiectasis. They think I mean bronchitis. If they have heard of bronchiectasis, they have heard of it in the context of cystic fibrosis, its most common cause in first world nations like the USA. However, it’s actually a very common condition in countries that don’t have vaccines or adequate medical care. Because two of the most common causes of bronchiectasis are vaccine-preventable childhood diseases, and inadequate healthcare. I got my bronchiectasis through inadequate healthcare. Whether the actual event that caused it was breathing in lots of concrete and wallboard dust during illegal construction on my building, or a subsequent set of lung infections that resulted in the partial collapse of one of my lungs. Or some combination of both. In either case, I was discriminated against for having a developmental disability, and doctors did not treat me until the infection had gotten really bad. Afterwards, they refused to believe I was still having symptoms, until my pulmonologist did a high resolution CT scan and found bronchiectasis.

Bronchiectasis, in brief, is a rare form of COPD in which the walls of the breathing cells are damaged. They become loose and floppy. They produce more phlegm, but have more trouble clearing that phlegm. This results in both susceptibility to infections, and the creation of more of the same damage through lingering infections that you can’t get rid of. If you can’t halt the vicious cycle, you eventually need a lung transplant. With proper treatment, however, it is only slightly more dangerous than asthma. The question is, in countries where people struggle to get vaccinated and see doctors at all, how many are going to be able to afford the proper treatments of mucus thinners or 7% saline to keep the disease from progressing until it’s fatal?

So I already have one vaccine-preventable disease. I also have adrenal insufficiency (not adrenal fatigue, which is a catch-all quack diagnosis, but adrenal insufficiency, which is a potentially life-threatening lack of ACTH and cortisol) and myasthenia gravis. Those have nothing to do with vaccines on the surface. But both of them are treated frequently with dexamethasone and other steroids. Those steroids suppress the immune system, leaving people like me more susceptible to diseases other people wouldn’t get. Including diseases people vaccinate for.

I know someone else with adrenal insufficiency, who is permanently on Prednisone, which suppresses her immune system. She caught whooping cough from an unvaccinated child and almost died. As it was, she dislocated several ribs from coughing, became severely dehydrated, and had a lot of seizures. Now that I’m on steroids permanently, I’m wondering if I’m looking at my future there. I rely on other people being vaccinated for my own safety. I am at risk both because of potential immune suppression, and because bronchiectasis makes some of the diseases themselves more severe and likely to lead to lasting infection.

And the thing is, vaccines don’t cause autism. They just don’t. But even if they did cause autism, it would be worth it for some people to be autistic, in order to save people the death and suffering that comes with these other diseases. Even if I absolutely hated being autistic, I would still see it as worth being autistic if it meant it saved the lives of people who would otherwise die from vaccine-preventable diseases. And if it meant that people wouldn’t end up with things like bronchiectasis — I can tell you that even mild bronchiectasis is not something you want, let alone the severe kind.

So please, please vaccinate your kids. And vaccinate yourself, when it comes time for your own shots. People like me are counting on you for our continued survival. And most autistic people I’ve talked to, even those who strongly dislike being autistic, say that even if autism was caused by vaccines, it’s better for some people to end up autistic, than for other people to end up dead.

Signed,

Mel Baggs (a multiply disabled autistic person whose life is at stake when people don’t vaccinate)

tl;dr: I’m autistic, and not just a little autistic. I also have diseases, and take treatments for those diseases, that put me at high risk for catching and dying from vaccine-preventable diseases. My continued survival depends on people vaccinating. And even if being autistic were caused by vaccination, I would gladly endure the worst parts of being autistic, forever, if it meant that some people’s lives were saved by vaccination. But autism is not caused by vaccination. And I could get really sick if people don’t vaccinate. So could lots of other people like me, who people forget about, because they only like to think about healthy people. So vaccinate your kids, and vaccinate yourselves, it’s horribly selfish not to unless you have really good medical reasons (of which fear of autism doesn’t count).