FDA Warns Companies to Stop Peddling False Autism Cures

FDA Warns Companies to Stop Peddling False Autism Cures

One of the FDA’s most notorious targets is a cure-all called Miracle Mineral Solution, whose creator claims to have found “the answer to AIDS, hepatitis A, B, and C, malaria, herpes, TB, most cancer, and many more of mankind’s worse diseases.” The operative ingredient in MMS is sodium chlorite, which is later mixed with citrus juice to form a bleach. Consumers, the FDA says, have reported “nausea, severe vomiting, and life-threatening low blood pressure” after consuming it, and federal prosecutors have gone after people attempting to sell it as a medicine.

The strange thing to me is how otherwise level-headed and reasonable people buy into all sorts of medicinal quackery.

The “D” Word

hazmat

Hazmat is ready!

A couple weeks ago, a couple news agencies earned some Internet ire over their use of the term disease when referring to autism spectrum disorders. (See here for one example that has been since updated to remove the language.) Immediately, I saw my Twitter feed fill up with individuals decrying use of the term in reference to autism, but, objectively speaking, is the criticism justified?

Just the Facts

Following the highly scientific method of asking Google to define disease for me brought up the following definition:

  1. a disorder of structure or function in a human, animal, or plant, esp. one that produces specific signs or symptoms or that affects a specific location and is not simply a direct result of physical injury.
  2. a particular quality, habit, or disposition regarded as adversely affecting a person or group of people.

Furthermore, Wikipedia’s entry on disease says the following (emphasis mine):

In humans, “disease” is often used more broadly to refer to any condition that causes pain, dysfunction, distress, social problems, or death to the person afflicted, or similar problems for those in contact with the person. In this broader sense, it sometimes includes injuries, disabilities, disorders, syndromes, infections, isolated symptoms, deviant behaviors, and atypical variations of structure and function, while in other contexts and for other purposes these may be considered distinguishable categories. Diseases usually affect people not only physically, but also emotionally, as contracting and living with many diseases can alter one’s perspective on life, and one’s personality.

By these standards, an autism spectrum disorder does, in fact, qualify as a disease, and it is technically correct for a news source to use that word. However, once you move past the sterile definitions, a whole set of emotions come into play.

Stigma Versus Awareness

The challenge with classifying autism thusly is that it is a spectrum disorder with a wide variety of symptoms and related severity. The term disease infers the need for prevention or a cure, and I am confident that many individuals and families enduring through the difficulties associated with more severe autism diagnoses are comfortable with that assumption. These parents just want their child to talk; they want him or her stop self-harming; they want to know their child will be a healthy and functioning adult. They want a cure and justifiably so.

On the other end, you have a population of individuals who have grown up with and see autism as intrinsic to their or their child’s identity. It is as important a part of who they are as your race, faith, or sexual orientation may be to you. To this population, the idea that they need to be fixed is offensive, is borderline eugenics. To take away the autism would be to take away something that makes them uniquely them. This is where I am and where my personal sympathies lie.

From this perspective, the term disease conveys stigma and blocks true awareness and acceptance of neurodiversity. I can’t accept you for who you are or do my best to accommodate your individual needs if I see you as fundamentally wrong in some way. That’s what gets communicated when we call autism a disease, regardless of the actual intention.

Even the CDC careful avoids the word on their website when referring to autism:

Autism spectrum disorder (ASD) is a developmental disability that can cause significant social, communication and behavioral challenges. There is often nothing about how people with ASD look that sets them apart from other people, but people with ASD may communicate, interact, behave, and learn in ways that are different from most other people. The learning, thinking, and problem-solving abilities of people with ASD can range from gifted to severely challenged. Some people with ASD need a lot of help in their daily lives; others need less.

The Takeaway

So should you use the term disease when referring to autism? While autism technically fits the description, I’d say using the word creates more walls than needed. When I heard my local radio station talk about the CDC’s findings and use the word disease, it bothered me a little — not enough to say anything, though. It’s just a word I wouldn’t use.

I’d recommend the same for anyone who writes or speaks about autism spectrum disorders. Disease alienates and stigmatizes. It may be an unintentional side effect, but it’s still there. There are better words to use, especially if we want to keep conversations and minds open as we continue to understand and discuss the diversity of needs and strategies in and for the autism community.

Autism AMA: Sensory Regulation

Back in April, I offered to participate in an Ask Me Anything (AMA) for my fellow teachers, and I responded to their questions as time allowed. It’s taken me some time to find them all as I saved my responses a variety of ways. Here is, I think, the final installment.

Erica asks:

I would love to learn more about the sensory needs. How do you regulate, knowing when there is a need?

Regulating the sensory stuff at school is tough because I can’t just head to a calming space in the middle of, say, teaching third grade. My job is very, very overstimulating, and those stimuli often manifest as physical pain. Xylophones for example – when my senses are overloading, they manifest as little needles behind my eyes. I’ve tried various ways to muffle instruments to reduce the sensory overload, but nothing has been terribly successful. I will, however, keep a lot of my lights off on any given day, and that can help.

I have a related problem of auditory prioritization. A child talking right in front of my is receiving the same amount of mental processing power as a pencil tapping across the room, the sound of the fluorescent lights, a conversation in the hallway, and the air vents. My brain is trying to process them all equally. It can make something as simple as a conversation somewhat confusing. If you’ve ever been talking with me, and I ask you to repeat yourself a couple of times – that’s likely what’s going on. Your words are just becoming disconnected phonemes lost among the sundry other sounds you are filtering out without a second thought.

I know I’m overloading when I start getting unaccountably angry. It’s like a crawling/twinging sensation in my neck and shoulders. At that point, I’m in danger of the class seeing me behave angrily (and some have), so I will often try to conclude the activity we’re on and move to something quieter – whether I’ve planned such an activity or not. Other times, if the kids are working independently, I’ll step outside my door for just a second in an attempt to “reset”. Sometimes, I may just get really quiet for a few seconds as I attempt to reset internally – but that’s a last resort as it guarantees a meltdown later to buy me a few minutes right now.

And that is a trick I’ve learned over the years. If I’m reaching social seizure point, I can sometimes defer the meltdown to a later hour. Unfortunately, that “later” is usually at home, and it’s more intense than had I simply been able to retreat when initially needed. Other self-interventions: I may keep myself weighed down with a jacket; I might keep fiddling with my Pod; I might keep my lights dimmed; I may just start playing my class keyboard.

It’s also important to understand sensory control. I might be doing something noisy – like playing a video game – that is still soothing and cathartic because I have *control* over the sensory inputs. It’s the *uncontrolled* stimuli that causes problems. An outside observer might see a contradiction when they see a kid upset by the noise in the classroom but calming down by banging on a drum. Stimulus control is an important part of sensory regulation.

Autism AMA: Headphones

Back in April, I offered to participate in an Ask Me Anything (AMA) for my fellow teachers, and I responded to their questions as time allowed. Over the next few days, I’d like to share some of those questions and answers with you.

Meghan asks:

I have had many autistic students who wear headphones because loud sounds bother them. Is this an issue for you? If so, how do you deal with it since you are around musical instruments all day? How does that affect you?

Oh, headphones. Have you seen much success with headphones? See here’s my beef with headphones – They’re touching my head. Geththemoff geththemoff geththemoff geththemoff geththemoff geththemoff! And then, they don’t actually eliminate any of the noise in the classroom; they just make things sound muddled. Softer sure, but harder to process. To recap: touching my head AND making the world even harder to understand. Made of fail in my book. Of course, every kids is different, but I’ve seen more autistic friends just grow frustrated and angry with their headphones than actually see them as a benefit.

Yes, loud sounds bothers me. But volume actually takes a back seat to quantity. See, when I’m in the cafeteria (for example), my brain seems incapable of prioritizing the sounds around me. You do it naturally. You probably call it “having filters”. This enables you to carry on a conversation with a child regardless of the other stuff going on in that setting. Me? The beep of the cash register, the lunch workers telling each other what’s running low, the verbal altercation between two classmates, the tapping of trays, the dozens of other conversations going on – all of these are trying to be simultaneously processed by my brain simultaneously. As I type this, the sound of a vent about eight feet away is every bit as loud as the sound of my fingers on the keyboard and a phone ringing in the office.

Timbre more than volume gets under my skin. Our glockenspiels (small xylophone-looking instruments with metal bars), metallophones (big xylophone-looking instruments with metal bars), and recorders (those plastic elementary wind instruments people incorrectly call flutes) can physically hurt to listen to. Add to that the variable of a large quantity of sounds happening at once, and it can cause problems with me. One of the first things I do is limit our use of my “problem” instruments. I know they may set me off, so we only use them when we have to. Second, I limit our instrumentation. Instead of arranging a song for voices and five different classroom instruments, I may arrange it for voices and two instruments. Additionally, I have modified some of our instruments to be less harsh. Several mallets have additional coverings to muffle the sound they produce, and a few of our drums are covered as well. Some of our barred instruments have additional padding under the bars to they are less resonant. They are choices made to preserve my sanity that someone else might see as reducing the musical integrity of the instrument.

If you were in my classroom on a particularly taxing day, you might notice small periods of time where I would disengage from instruction, close my eyes, and get very quiet. I was doing the mental equivalent of rebooting, letting my senses disengage for a few moments and then re-engaging them after a short recovery period. Think of it like a computer: you have too many processes open, and suddenly everything freezes and becomes unresponsive. Then you hit ctr-alt-del to see what program is causing the holdup. Or you might reboot entirely. In an autisctic child, a full reboot usually manifests in a social seizure.

Speaking of, I can also have what I call a “delayed social seizure”. Let me define that before I explain it. Social seizure is how I refer to meltdowns. Autistic meltdowns are almost always triggered by social stimuli, and when they are triggered, the individual can lose control of physical and verbal faculties. Hence the term social seizure. Delayed simply means that it’s going to happen; the meltdown is inevitable. I’m just not allowing it to happen right now. So I say to myself, “Self, you’re going down. Can we do this during lunch instead?” Self says, “Fine, if you insist,” and then I go about my day in an escalated but controlled state until I can lock my doors, turn off the lights, and shut down for a while. This took a long time to develop, and I have no idea how to teach someone else to do it.

Nothing had a 100% success rate in the classroom, but those are some of the ways I would try to regulate auditory overstimulation as well as my reaction.