NTs Are Weird

First, I’ll say that I know not everyone can work. If you can’t work, that’s fine. I don’t have a problem with that.

That said, I think work is really important for a lot of autistic people. Temple Grandin talks about how work is her life - that it is what gives her life meaning. I can relate to that, although I have a few other things in my life that give it meaning too (like my religion and friends). But regardless, I think a lot of autistic people get a huge part of their identity from their work.

That is why it is unfortunate that so few of us have found good work environments.

I met, last week, another autistic person who is just getting started in his adult life. Right now, he’s working at what he calls a stable job (something he desires in a job), but one which, when I asked if he wanted to work in that field at age 70, he responded quite clearly, “NO!” His true interest is another field - in fact it happens to be my field. Talking to him, I could see why it might be hard for him to find work, but at the same time I kept thinking, “Hey, if someone gave this guy a chance, he’d be the hardest working and most reliable employee they had ever hired.” Sure, there are a few rough edges that would need to be smoothed out. But that’s not unusual at all for people that age, it just happens that his edges are a bit different than other people’s edges.

Talking to him, I could clearly see how he could have a job he truly loved in the computer field, and which would not be an act of “charity” but rather real work that is worthy of real pay. I could see how he both himself and his employer could benefit from his employment. I could sense the enthusiasm he’d bring to his work - that’s the great thing about autistic perseverations that can be molded into employment. If we find work in an area we love, there is almost no limit to the amount of effort we’ll expend - in fact I’m pretty sure that’s how many scientific advances (including the creation of the modern computer) came about - autistic people who were lucky enough to work in a place where they spent their day “playing” but where the play also happened to have a value to society as a whole.

I look at my career path, and am forever grateful to the few people who took an interest in me. As a result of their interest - their mentoring - I have a strong belief in mentorship of autistic people. We might not accept instruction on social skills from a random person, but we will listen to someone who we admire (and, yes, autistics do admire people!). In my teenage years, I was pretty darn unemployable. A couple of teachers (neither of whom actually had me as a student, which makes their work even more amazing to me in hindsight) saw that I was interested in computers. They gave me opportunities to “explore” my interest, while subtlety guiding me in many areas other than computers. They were wise enough to realize that I could learn computer skills plenty good on my own with the right resources. But they also realized that my interest in computers was the way to get my attention, interest, and effort. By helping me pursue my interest, they were able to teach me all sorts of things that lots of others tried and failed to teach me.

Around this time, I also was fortunate enough to be employed in a local non-profit doing computer and other office tasks. I was appreciated for the effort I put in, while also receiving correction in areas that I needed to grow in. What made the correction work was the fact that it was happening in the context of my interests, and done in a way that I could see the point. Autistic people don’t generally learn by being told something is true, we need to see the “why”. In the workplace, while pursuing my interests, I could accept that it would make me a more attractive employee down the road if I answered the phone politely. Amazingly, this type of correction was done in a way that didn’t make me feel like I was being singled out or treated any differently than anyone else. Sure, the corrections I needed to make were very different than what other people might get corrected on from a boss, but the problems I had were treated the same as problems any other employee might have. They weren’t ranked, nor was I made to feel lousy because of my inability to master some “basic” skill. Looking back, I realize how rare it is to have such capable management.

I could have went to hundreds of hours of “work skill” and “social skill” classes, but they wouldn’t have worked. I wouldn’t necessarily see the “why” (okay, so people like me to be polite. So what - what is in it for me?). I wouldn’t have been able to put these skills into the context of my life, and thus they would never have been applied.

I truly encourage autistic people and parents of autistic people to seek out mentorship opportunities for themselves or their child. But, when doing this seeking, it’s important to recognize a few things. First, one autistic person might admire completely different people than another, and neither may admire the same people that neurotypicals admire! It helps to find someone that is truly gifted in an interest of the autistic person. The mentor must be truly gifted however, not just employeed in the field or some such, as someone with an intense interest in the mentor’s field will be able to spot a “wannabe” pretty easily! It is also important that the mentor truly enjoy spending time with the autistic person, and not just see the autistic person as a “project”. The relationship won’t last if it is just a project, and, besides, who wants to be a project?

I also encourage everyone to be exceedingly creative when it comes to autistic employment. You don’t have to do what was done before. Look at the autistic person’s interests, look at their skills, and be willing to creatively find careers that fit the person, recognizing that everyone grows over time (few good CEOs would have been good CEOs at 18!). Learn about the common jobs in a field, but then learn about the not so common ones too. It is possible for many of us to be attractive to an employer, although it may take us some time to find an employer that is willing to set prejudice and “the way things are done” aside, to take a chance on an autistic person. But I think the world - and the autistic person in particular - is better off when we have a way of both contributing and being recognized for our contributions (this is typically through work, although once again I recognize there are more ways of contributing than just work).

I’m worried for my people. We, as autistic people, are receiving “medical” treatments that are untested. We’re receiving “medical” treatments known to be dangerous. We’re being experimented on by people “looking for hope.” We’re being pumped full of drugs (or “supplements”) that we neither need nor which are beneficial for us - all this not because it is known to help us, but rather because some are so desperate to see their loved one “free” of autism that they will try anything - much like a cancer patient who goes to Mexico to escape the “oppression” of most other countries’ medical regulatory boards (I’ll note that many Mexican clinics use chelation for “curing cancer”).

Other times, we receive psychiatric medicine that is inappropriate for us, because our differences are disconcerting or “more work” for others. Some of us are given sleep aids to make us “more manageable” while others are given powerful psychiatric drugs to “calm” us down.

Yet other times, we have legitimate medical complaints, only to find no doctor is willing to look past our autism and treat the real issues. Many of us have lived years in pain that could be treated. Others die for want of basic medical attention that is readily available to most people (but not necessarily autistic people). I’ve written about my experiences with doctors many times - health care is often inaccessible to us.

There is a genuine need for good medical care for autistic people.

But I’m writing about something today based on some worrying things I’ve read lately online.

I saw selenium recommended for a child that recently had a tetanus shot, because the tetanus shot contained a preservative designed to prevent a bacterial infection (thimerosal, which is a form of mercury - which is safe in this application, but wrongly implicated in the minds of some as causing autism). There’s a problem, though. Selenium is classified as a hazardous substance by the US Center for Disease Control (CDC). While it is true that small amounts (very small - measured in MICRO grams, not MILLI grams - a microgram is 1/1000 of a milligram) are required for human health, most people get two to three times the minimum amount required by simply living and eating - the amount needed is miniscule. For an adult, the maximum tolerable intake level - the upper limit at which bad health effects are not expected to occur - is 400 micrograms. 1-3 year old children have a maximum tolerable intake level of 90 micrograms. Yet, searching online, selenium supplements are supplied in milligrams - not micrograms - and even one milligram is above the tolerable intake level for an adult. I saw supplements that claim to have between 125 and 200 milligrams of selenium (the 125 milligram amount was recommended for children weighing 30 pounds) offered to help excrete metals. I truly hope these supplements are not what they claim, as exceeding the maximum tolerable intake level by over a thousand times does not sound wise to me. Of course it’s possible that people are confusing the symbols for micrograms and milligrams, and I hope that’s the case. However, even if that is the case, it’s almost certain that the addition of one dosage of these supplements would cause exceeding the maximum tolerable intake level for selenium. Some of the effects of excess selenium exposure do sound somewhat familiar - they are often the things that mercury causation theorists (who often use selenium) talk about being associated with mercury. Short term effects, from the CDC’s website, are “nausea, vomiting, and diarrhea. Chronic oral exposure to high concentrations of selenium compounds can produce a disease called selenosis. The major signs of selenosis are hair loss, nail brittleness, and neurological abnormalities (such as numbness and other odd sensations in the extremities).”

Another therapy I saw recommended was the use of epsom salt soaking instead of proper medical treatment for a dirt-infected wound (proper medical treatment may include a tetanus shot which will “make autism worse” according to some). Epsom salt is not anti-bacterial and non-sterile (it’s not supposed to be put in open wounds!). An infection can cause tetanus (hence the reason for the tetanus shot!). It can result in the loss of a limb or even death. It’s a very serious medical condition indeed - I would not listen to anyone that says that an infected wound should not be treated with modern medicine, even if they thought vaccines are the cause of autism.

While not a specific “cure” or “therapy”, I saw a lot of reference to behavior changes when trying “alternative” treatments for autism. Basically, the idea is that behavior is expected to become worse in autistic people who are “detoxifying” or ridding their bodies of demons (oh! Bad Joel! I didn’t mean to say that!) or whatever. As the “toxins” are leaving the body, apparently the body “fights back” and the result is a very upset autistic person. While this may sound plausible, it is not backed by science. It is also not backed by my experience as an autistic person. When I become “more autistic,” it usually indicates something is really, really wrong. I might be in extreme pain. I might be sick. I might be malnourished. I might be very, very stressed. None of these things are good, nor are they the sign of something good happening. In people who are not fully able to clearly express themselves about how they feel, a change in behavior may be the only sign that there is a serious medical condition. It might even indicate a need for emergency treatment! It certainly is worth investigating to see if there is a cause, related or unrelated to the treatment.

Of course this is just the start of the things I see that really scare me. It’s one thing to have an intellectual theory that is different than mainstream science. It’s quite another when potentially dangerous treatment is used on autistic people.

Big White Hat posted an Open Letter to Autistics and their Parents.

I got the link from Autism Diva, and thought this type of thing needs as much publicity as it can get. So I’m doing my part.

Also, like Autism Diva, I’ve turned off comments on my entry - comment on Big White Hat’s blog. So check out Open Letter to Autistics and their Parents”.

(really, I’m not writing this to talk about mercury - I’m just using it as an example to explain)

Recently, police raided a doctor’s office. This doctor, Roy E. Kerry, was providing a controversial (and unscientific) treatment for Abubakar Tariq Nadama, a young autistic boy from England who was taken to the US because this therapy wasn’t available in England.

The therapy was chelation - the theory is relatively simple to explain. The theory is that heavy metals cause brain damage (but strangely advocates of this theory don’t believe these metals are damaging other organs that are typically damaged by genuine heavy metal poisoning - it just affects the brain and gut). By “chelating” the heavy metals, or unbinding it from the cells it has damaged and excreting it (hopefully not redistributing too much), those cells would no longer be damaged or they would become undead or something (this would be a very rare form of brain damage indeed - brain damage is not typically reversible). The advocates of this theory believe that much of what is called “autism” is really “heavy metal poisoning”. They are wrong, but that is beyond the scope of what I want to talk about here.

There are a couple problems with what Roy Kerry did. First, chelation therapy for “heavy metal induced autism” is untested and unproven (ironically this is what people who chelate claim about vaccines - that vaccines are not proven to be safe, despite having far more testing than chelation). Second, he used the wrong chemical - a chemical with a similar name to the one that advocates of this theory suggest. Unfortunately this chemical removed a metal that is very vital - essential for life - calcium. As a result, 5 year old Abubakar died.

I expected even the chelation community to express outrage over this preventable death (it was even preventable if what they feel is proper therapy was done rather than the mistake Kerry made). Instead of outrage, however, there is sympathy. Roy Kerry, after all, was trying to help autistic people in their eyes. So that puts him beyond suspicion. In addition, it’s felt that there is a global conspiracy against Kerry by the drug companies (who make vaccines) to sacrifice this “honorable” doctor for the sake of the vaccine trials soon to start (which is strange, since Kerry’s guilt or innocence has no bearing in court on whether or not vaccines cause autism).

Of course that’s not the only area free passes are given. Other times, free passes are given to institutions and schools. There are notorious institutions, where inmates have died, which are defended fiercely by parents of other inmates because they “helped” their kid. Nevermind a preventable death or two, they are helping.

Recently, an Oklahoma (USA) school district fired a special education teacher on grounds of abuse. Three paraprofessionals testified that this abuse occurred, and the school district felt that they had enough proof to justify firing the teacher (wrongful termination would expose them to a lawsuit, after all). Reading the comments to the story I linked above, I am disgusted. Simply put, there would not be any question of what should be done if the teacher worked with non-disabled students - even an accusation of abuse would remove that teacher from teaching the children, and every parent would be completely supportive of such actions. Simply put, we must error on the side of caution and protect the children when it comes to abuse. But, because she was a special education teacher that taught difficult students, she is held to a different standard by many.

Parents, too, sometimes get a “free pass”. After all, they have a difficult (truly) job to raise a child, and some parents find an autistic child especially difficult to raise. Autism Speaks, a major US charity (one might make an observation that there is not a single autistic person speaking on the board of Autism Speaks - imagine a woman’s organization with no women on the board or a gay organization with no gays on the board) put out a video where a mother (in front of her autistic child) talked about wanting to drive off a bridge with her daughter (see one parent’s reaction). While there has been some reaction among autistic people (few of us want to be murdered), and also among parents, there has also been a lot of “understanding” for the parent who said these things. After all, raising an autistic kid is hard, so it’s okay to have murderous thoughts towards that child. This type of hate speech would not be aired on a major TV network if it was directed towards a racial minority - nor should it be. But it also shouldn’t be aired when directed towards autistic people.

Several parents have received no jail time (or very light sentences) after murdering their autistic children. The courts, prosecutor, and juries typically talk about how hard raising an autistic person is. So you can even get a pass for murder if you are forced to endure the horror of raising an autistic child (yes, that’s sarcasm).

(Note - because if I don’t put this disclaimer some people will read into my writing: I know that there are plenty of good parents, teachers, doctors, and schools. I don’t believe in good institutions, sorry. I recognize the work done by the people who not only have good intentions but are working towards those good intentions in a way that is not harmful to autistic people. My comments are not addressed to these people.)

These “free passes” are a result of prejudice, plain and simple. They are given when people believe that autistics are truly “untouchables” and so awful to have to “deal with” that it gives the person some sort of “indulgence”. Instead of paying the church some money and being able to commit some sin without fear of having to pay for that, society too often accepts payment in the form of having to deal with one of us.

When I’m communicating with people, I’m finding that sometimes I leave key points out or forget to connect two disjoint points together. I’ll talk about Point A and then talk about Point B, but then I seem to just assume people will be able to connect them to form Point C, or I’ll assume that they already know Point B and thus don’t need to be told.

This probably is part of my autism, although whether it is the lack of being able to see how others will interpret my words or whether it is that I think very differently and thus don’t need the same connections to be explicit - well, I don’t know.

Other times (probably more common) rather than intentionally leaving something out when constructing an argument or explaining something, I’ll simply forget to include it. I might think through the connections in my brain, see the “schematic” of what I want to express, but then have a problem in the “translation” process. I can’t write what is in my brain without translating it. I think in terms “things” and “connections”, sort of like a map or a schematic. I certainly don’t think linearly like speech or writing demands - there is no temporal order with the things or connections. I know this is a confusing explanation, but it’s the best I can do right now. So, putting things down in temporal order (writing or speech requires that some things come before others) is very, very difficult for me.

Sure, I’ve learned to hide that difficulty pretty well and I have a lot of practice translating my thoughts. But this will always be a second language, and I’ll always have the problems that come with speaking and writing in a second language.

One of the problems with this translation - besides the obvious one of not being as skilled at speech or writing as a “native” - is that it requires a lot of working memory. I have to pull things out of the schematic and stick them in the working memory, while reordering things in the working memory so that I can express it in a temporally linear way. The problem is that I have an extremely poor working memory - so things inevitably fall out of it. Then, when I write or speak, I don’t know what I forgot so I don’t mention those things.

This can be very frustrating - I’ll think that I’m explaining things clearly, only to find out that I’m not later. While some people are willing to continue the dialog, others assume that if I didn’t show how thoughts were connected or I left some key part out, then I must not be capable of thinking through complex issues. In other words, I’m just speaking meaningless phrases, and I can’t possibly know anything about what I’m talking about. I’ll admit that hurts sometimes, and I’m learning to avoid certain conversations (like politics - although I still remain involved on some autistic political groups, despite the too-frequent miscommunication), simply because life is easier without that stress. But it sure would be a wonderful world if this type of communication difficulty was more commonly recognized and if people were willing to talk a bit more before dismissing someone because they didn’t perfectly explain how someone else could get from Point A to Point B (I say “someone else” because that’s not how I get from A to B, but unfortunately I can’t express in writing or speech how I do).

I truly hope this post makes sense to people - I somehow suspect I’ve left things out that are really important and that what I didn’t leave out may have been corrupted by a bad translation.

(oh, yes the title was intentional - it’s my autistic humor; Other omissions were not intentional)

Recently, some have expressed concern about the title of my blog, “NTs Are Weird.” I thought the humor would be clear, but apparently my humor is not universal, and some people have been genuinely offended by the title, seeing it as an attack or hostility towards neurotypicals (NTs).

First, to me, “weird” isn’t exactly an attack. It’s saying things are different, unusual, quirky, and even fascinating in their own way. I recognize weirdness in myself, and am not offended if someone tells me that I’m weird. That said, of course, I recognize that it can also be an insult, but I believe context is pretty important here. Telling the socially isolated young child that he is “weird” to remind him - mocking him - that he will never be part of the group is certainly cruel. Telling the world as a whole that you think the world is weird is not.

Secondly, I would not be offended by a blog that had a title of “Autistic Weirdness” or even “Autistics Are Weird”, provided the blog had a generally positive view of people with autism. Of course we’re weird. There’s nothing wrong with that!

So, yes, I am a bit puzzled that people saw it as hostility towards neurotypicals. It’s not intended that way.

It’s intended as a humorous reversal of the stereotypes often applied towards autistics - we’re typically seen as weird, and different, than everyone else. Well, from an autistic point of view, neurotypicals are weird and different! In other words, the things that are said about us often can be applied to neurotypicals too. It is intended to be humor in the same way that the Institute for the Study of the Neurologically Typical is intended to be funny.

I also changed the subtitle to something that hopefully makes the humor more clear.

I hope this explanation (which is now linked to from every page of my blog) helps lessen some of the concerns people have about the title.

Besides, I’m probably far weirder than most of the people reading this - whether they are autistic or neurotypical.

We don’t have empathy. We can’t put ourselves in someone else’s shoes and understand what it is like from their point of view. We can’t see through someone else’s eyes.

Well, that’s what the experts say about us anyhow.

As I re-read the responses to What do you love about your autie, I’m struck by one thing - how often the autistic’s concern for others is cited as a positive quality (the comments to that entry are some of the coolest things I’ve read lately).

People talk about an autistic child teaching a younger sibling - which requires empathy, because if you can’t figure out that someone else doesn’t know something you know, you probably wouldn’t even try to teach something.

Others talk about how they know if family members are unhappy, and then they try to do something about it. Hmmm…that sounds empathetic to me.

A bunch of people wrote about how the autistic person in their life notices sadness in others.

Of course this isn’t all - read through the responses yourself and count the number of times where the autistic person being described would have to have empathy or would have to put themselves in someone else’s shoes. It is amazing that so many responses cited something that the experts say is missing in autistic people.

I know I’m not always the most sensitive person. But that hardly means that I don’t have empathy or that I can’t imagine myself in someone else’s place. In fact, much of my day, interacting with neurotypicals, I find I must imagine things through someone else’s eyes - a form of empathy. To be honest, I think neurotypicals do less of this than autistic people do, as most of the people around them most of the time think like they do. Neurotypicals don’t usually need to run with their translation system on full power.

My parents tell me how I would come home from school and talk to my brother about what I learned in school. I imagine it was fun to watch - my younger brother looked up to me greatly then (I didn’t realize how much until fairly recently) and I loved him. So my brother was very interested in what I was talking to him about, and I was very interested in him. Hardly the type of relationship that would happen without empathy.

Perhaps the tests and experiments measuring empathy don’t actually measure empathy? It is hard for us to understand many of the things neurotypicals do (just as it is hard for them to understand us). We also have different responses when confronted with, for instance, someone who is sad. For me, it is overwhelming, threatening to wash my being away, when someone I care about is upset. The only thing I can do is to freeze and look into myself. This isn’t because I don’t realize someone is suffering, it is instead because they are suffering. I feel the pain very deeply. A differing response to that pain doesn’t mean that pain isn’t felt! (One thing I’m glad I’m learning is that I can often do something after the fact to show that I care and that I realized the person was hurting - even if I can’t do it in “real time”, I can figure out a way of letting them know without having to be washed away - for instance, I might write them a letter later, letting them know that I want to be there for them)

I’m also not sure that neurotypicals always demonstrate great empathy. How much empathy does abuse demonstrate? What does it say about viewing other people as individuals? What does it say about neurotypical empathy when a neurotypical kid stands and watches an autistic kid being mercilessly teased by a bully? Clearly concern for the autistic kid isn’t that high on the list. Yet, the bully and the bystander have empathy - they aren’t autistic, after all.

In case you’ve missed world events, a group of British soldiers was recently accused by Iran of being in Iranian water while conducting an inspection of a cargo ship. Britain insists that their soldiers were a bit over a mile inside of Iraqi waters, where this boarding was being done with the approval of the Iraqi government. Both the Iraqi government and the merchant vessel captain also insist that the events took place in Iraqi waters. Even so, the British sailors were taken prisoner by Iran. Fortunately they have since been released, but I want to talk a bit about what happened while they were being held by Iran.

While being held by Iran, there were several statements made by the captured sailors, or at least claimed to have been made. Letters were delivered to the British from at least one of the prisoners. These letters talked about how wonderful the treatment by the Iranian government was and how the prisoner was very sorry she was in Iranian waters. It was a confession. Most of the western world viewed this immediately with suspicion - it’s pretty easy to make a letter say whatever you want it to say, and even to get it written down by someone with a gun to her head. People can pretty easily see the possibility of “influence” in the communication.

Later, however, the sailors were seen confessing on TV - and no one on camera anyhow was holding a gun to anyone’s head. In fact, the sailors seemed to be in good spirits, and also contrite about their alleged violation of Iranian sovereignty. A lot of people questioned whether or not these were legitimate statements, free of influence, but it was certainly harder to make that decision than it was when there was just letters. Regardless, it seems clear that there was at least a possibility of influence, with most people agreeing that it was almost impossible that the “confessions” were not forced.

Often, when autistic people use facilitated communication (a form of alternative communication that typically involves typing while someone provides pressure against your body, typically with the pressure applied in a way to move the communicator’s hand away from the keyboard), it is assumed that they are being influenced. After all, you can see someone physically supporting a wrist, arm, or maybe just shoulder. Sometimes it’s simply touching the top of the communicator’s head. But especially with the higher levels of support - the wrist in particular - communication is often considered to be influenced.

There are a few problems with this way of thought, though. The first, as the Iranian captives demonstrated, influence doesn’t have to be physical. I know of autistics who are able to use their voice in a limited way, type at other times independently, and use facilitated communication at other times. Their voice is often the most likely means of communication to be influenced by someone else. I know for myself, that if I want to say something important, you probably want me to type it. If I speak it, I’m likely to speak what is expected or I may simply engage in what I call “complex echolalia”. What I say makes sense. The problem is that it isn’t what I want to say, and it is likely being significantly influenced. But yet influence is never considered for speech, when an autistic makes utterances. It’s only considered for one particular mode of communication - which is very dangerous indeed. It ignores the realities of autistic communication problems. It ignores the fact that for many of us, influence is already a part of our lives, whether we communicate with facilitation or not. Not recognizing this influence, which for some of us is always present means never questioning the authenticity of our communication, even when it should be questioned.

An example of this influence in my life is visiting the doctor. If I use speech, and the doctor asks if I’m well, I’ll say “yes.” Every time, no matter how much pain or misery I’m in, I say I’m fine. The reason is that medical professionals intimidate me and are seen as a source of authority. My coping mechanism towards authority - from years of abuse by authority - is to want to please the authority. This isn’t the doctor’s fault, and the doctor certainly doesn’t know it’s happening. But that influence is just as real and significant as any influence a facilitated communicator may have. Things get slightly better if I use a Lightwriter instead, but I’m still likely to ignore the fact that I threw up 10 minutes before the doctor appointment - I’m still going to say I’m fine. My only salvation here is that typically by the time I show up at a doctor, I am so ill that the doctor doesn’t need to ask me if I’m well (but it also means only the visible symptoms get treated).

Another problem is that once someone’s communication is labeled as “suspect”, all their future communication is labeled as suspect. I know of autistics who communicate without any physical support today, but are still accused of being mere puppets of their facilitators. It amazes me that someone can be an independent communicator (in the physical support sense) yet people choose to ignore evidence of this independent communication, because if they didn’t it would mean acknowledging the communicator’s words, which often talk about how they were communicating using facilitation.

I’ve been lucky to meet some facilitated communication users in a setting where they weren’t “on guard” and expecting every word they communicated to be weighed, compared to some invisible standard, and then either discarded or approved. As someone who communicates without physical support, I can’t even begin to imagine what that is like day after day to experience - but I imagine it is absolutely draining. I also suspect it is incredibly depressing - some people have gained a “voice” only to be told that their voice isn’t real. I’ve had one experience like that in my life, as a child, and it still affects me today. Facilitated communicators live in that experience.

I am always amazed when I meet people with the emotional stamina to endure incredible difficulties. The difficulty isn’t necessarily trying to communicate for a facilitated communicator - it’s even getting the words they do manage to communicate to be acknowledged.

A major goal every facilitated communicator is to be taken seriously. Sometimes this is expressed as “having a voice” - that is, using their vocal cords to produce speech. Sometimes it is expressed as “independent communication.” But the desire itself is more basic then that - it’s to simply be believed, without a lot of questions and doubt. To achieve this goal, and because changing society is very difficult, most facilitated communicators work exceptionally hard to “fade” the support they receive from their facilitator. Most have a goal of independent communication - removing the “obvious” source of influence. I don’t think anyone but someone going through this process can understand it, and I won’t claim that I can. But I can say it is exceedingly difficult.

The sad thing is that this shouldn’t be necessary. Yes, fading support and independence are still good goals, and should be pursued. But this shouldn’t need to be done just to have anything you say believed to be from yourself. Equally sad, there is still influence even when you communicate without facilitation - and for autistic people that influence can be disabling. But that’s not the kind of influence anyone ever wants to talk about.

I’ll start this post by saying that I do think autistic people need to be part of the disability community, and that there is a lot of good that has already come out of autistic and non-autistic disabled people working together. We have the same basic needs.

That said, the disability community can annoy me to no end sometimes. I’ll list some of the things I hear others in the disability community say sometimes:

1) “My disability is worse than yours” - In other words, I have a rougher life than you do. I am a “real” disabled person, you’re some sort of wannabe. Thus, my opinion carries weight, yours does not. The problem is that disability can’t exactly be compared this way, nor is it relevant. The reality is that we all need appropriate support and inclusion.

2) “I’m not a retard.” It always amazes me when disabled people lack the basic respect of others to avoid using disability-related derogatory language. It’s one thing for a black say he is or isn’t a nigger. It’s quite another for a hispanic to say the same thing, even though both hispanics and blacks might be minorities in a given location. In the same way, we should refrain from using language that isn’t respectful of others with a disability. This isn’t political correctness, this is respect. We should call people what they want to be called.

3) “At least I have my mind.” This implies that it is somehow better to be physically disabled than intellectually/neurological disabled. It also exposes a prejudice, ironically one that the disability community has fought for decades - that a disabled person is no less a “person” than a non-disabled person. It doesn’t particularly matter what the origin of the disability is.

4) “How dare you sue us under the ADA!” This is an American one, although I suspect it will become more popular elsewhere. Disability organizations should be no more “above the law” than private business, and when they engage in discriminatory acts, they should face consequences. Too often disability organizations are inaccessible to those with disabilities. Sometimes it’s a blatant case of inaccessible buildings (people sort of understand physical access nowadays). Other times, it’s “more subtle” and a case of being inaccessible to people with neurological or intellectual disabilities. The organization might not be willing to explain complex processes, might prohibit tics (calling them “outbursts”), or fail to recognize that meltdowns are often a result of lack of access and need to be treated differently than intentional aggressive acts. When confronted, the organization talks about how it would be horrible to have to accommodate those things, how it would prevent them from doing business, etc. In other words, they use the same excuse that business uses, and unfortunately the only response is the same response that disability organizations have used for years against business.

5) “We’re the voice of the disability community.” (sometimes it’s even worse and an individual, rather than group, makes this claim) There are many voices in the disability community, just as there are many voices among women. Not all women agree that women should be allowed to hold jobs, for instance. We have similar minority views in the disability community, and it would be to our advantage to acknowledge them, even when we ourselves disagree.

6) “No one but us is doing any good.” Often, disability groups - especially ones that have accomplished something - assume that they are the end-all and be-all of disability organizations. No one else can possibly do any good, nor is anyone else even trying in their eyes. Of course this ignores much real work in the disability community.

I’m sure there are dozens of others. Feel free to add them as comments. In the meantime, if you are part of a disability organization, and you see yourself doing these things, fix your organization. If you don’t think your group does these things, I’d advise looking again - just to be safe.

In a past article, I showed, using the number 1 in 150 for number of autistics, and the US population, that around 26,000 autistics will be born this year (you can debate whether they are born autistic or not, but around 26,000 will be autistic - either at birth or within a few years, depending on your political views), but 600,000 people will die this year of heart disease. Of course there is nothing amazing about these numbers - they are in line with numbers from other countries around the world. So, in essence, over 20 times the number of “newly created autistics” will die this year due to heart disease. Yet autism continues to be considered “extremely common” and the “biggest health epidemic the nation has ever seen.” No wonder health care policy is such a mess today, if 600,000 deaths a year are ignored for the sake of 26,000 newly minted autistics (I’ll add that most of these autistics will not die fitting the stereotype of a low functioning autistic - most will speak, be able to use the toilet, etc).

But, nonetheless, there has been a particular interest by many in the idea that a polluted environment causes autism. Thus, when there is a “hot spot”, especially if that hot spot is in a place like New Jersey, which, factual or not is known as a place with high pollution, it is assumed that this demonstrates a “connection.”

However, before you can decide that where people live has anything to do with autism, you need to do a few things. The very first thing you must do is to eliminate other variables. Perhaps different areas of the country diagnose autism slightly differently, resulting in different autism rates. Perhaps culture is relevant to the manifestation of autism (the canonical example of this is eye contact, which is useless for diagnostic purposes in some cultures). The average wealth of an area also has a key effect, and must be accounted for in the study. Controlling these variables is beyond the scope of this article, but it is very important and has a very important affect upon diagnosis.

The other thing you must do - and in fact all quantitative science aims to do - is to determine whether two things are connected, or, as scientists say, correlated. When studying rates of something (like autism) in a population categorized by geography, you are attempting to say geography is correlated with the rate of autism. What this really means, to the scientist, is that autism is not randomly distributed geographically. If geography has no connection to autism, and is thus randomly distributed, then you are just as likely to find autistics in Paris as in Denver, or even Brick Township. (This is also called the “null hypothesis” - good quantitate science attempts to prove the null hypothesis, and only when that doesn’t happen is the real hypothesis considered as perhaps being accurate)

That moves us to Brick Township, New Jersey, USA. In 2001, a study was published in Pediatrics which was interpreted to mean that there was an epidemic of autism in Brick Township. This study is often cited by those who want to show that pollution causes autism. After all, if there was an extremely high rate of autism in a certain small geographic area, it might be worth looking into, to determine if there is something that is causing it. However, looking back at that study, we find that 6.7 out of every 1000 children were autistic - in other words, 1 in 149. Being that the commonly cited (by organizations promoting the idea of environmental autism) rate of autism is 1 in 150, it doesn’t exactly look like Brick Township is different from anywhere else in the US. In fact, what is striking is how accurate that 1 in 150 number may be.

So, dismissing Brick Township’s “extremely high” rate of autism (which is the same as the rest of the US’s), we are left with mostly anecdotical reports of “There are 3 autistic kids in my neighborhood alone” and other similar reports to demonstrate that there is “high” rates of autism in some areas. So, how would we determine whether an area’s high rate of autism is a result of correlation with geography?

The first thing you have to do is understand how a random distribution works, so that you can see whether things are random geographically when it comes to autism. If you don’t know what random distribution looks like, you don’t know whether or not the results are a product of randomness.

To do that, I constructed a short Perl program that calculated the number of autistics in 20,000 groups of 300 “children”. Each child had a 1 in 150 chance of being “diagnosed” by my program. Each group of 300 was chosen to represent a medium-sized neighborhood, which might have around 300 kids in it. I simulated 20,000 of these neighborhoods to find out how many would have “more than expected” numbers of autistics, if autistics are randomly distributed. My program created a large datafile which consists of the “group number” (starts at zero and increments to 19,999), the number of “autistics” in that group, and the percentage of autistics in that group’s 300 members.

The raw results were that a total of 40,053 “autistics” were diagnosed by my program. Since each child had a 1 in 150 chance of diagnosis, we would expect a number very close to 40,000 - and we are right on target. Our actual (measured) rate of autism was 1 in 149.8. The random distribution could be graphed as:

As you can see, this very closely resembles a bell curve centered on 1 or 2 autistics out of a group of 300. Now, if I told someone that, in real life, there were 6 neighborhoods in the US out of 20,000 I studied that had an autism rate of 1 in 33, or nearly 5 times the US average, most people would agree that we should study them. But if a scientist only found 6 groups out of 20,000, he would conclude that this matches a random distribution and studying these 6 groups would be a waste of time, as a random distribution would naturally produce a few “hotspots”. Unless the number of hot spots is higher than what could be explained from a random distribution, it’s not worth investigation, as the random distribution sufficiently explains those groups, and it most certainly is not due to pollution or other environmental factors. Now, if 100 groups had a rate of 1 in 33, that would be worth investigation scientifically, as the random distribution would only be able to explain somewhere around 6 of those groups, and pollution, environmental factors, or other variables might be responsible for the higher rate of autism.

Unfortunately scientists know this, but many lay people do not. They hear of a high rate of autism (1 in 33!!!) and immediately say, “Hey, there has to be a cause!” Scientists, however, look at it and say, “1 in 33, okay, but is there a correlation? In other words, could this be explained by a random distribution, or could it not?” Sadly, this is counter-intuitive to many people, and people are often more willing to trust their “instinct” than the scientific facts. Living in a neighborhood with a 1 in 33 rate of autism doesn’t necessarily mean that there is anything but chance at work.

A couple of other interesting facts from my fictional autism data: One third of autistic children are in neighborhoods that have a rate of autism over twice the 1 in 150 rate. And only 14% are in neighborhoods with less than the 1 in 150 rate. This probably explains why anecdotical accounts of “lots of autistic people in my neighborhood” are so common. More autistic people live in neighborhoods with more autistic people (how is that for a truism), and less autistics live in neighborhoods with less autistic people! This is the nature of the random distribution. And, in fact, we know that one third of autistic children will live in neighborhoods (assuming all neighborhoods have exactly 300 kids) with at least twice the normal rate of autism, even if chance alone can explain the distribution of autistic people.

Now of course we know that autism isn’t completely random, and that there is a strong, but not complete, genetic basis to autism. But we must be very careful when looking at poorly designed studies and anecdotes when we look for that “other” causal factor of autism. Statistics, once again, are essential - and if someone doing the research can’t explain why the results couldn’t be explained by the random distribution, that person has no business publishing results, as he doesn’t have the very basic information he needs to draw any conclusion whatsoever (I’ll note that people who can do statistics, in the scientific world at least, probably also know how to use a computer program called SAS, and, even more importantly, how to interpret the results). Statistics are the key to understanding science, and most science - in particular epidemiology - absolutely requires statistics. The statistics are at least as important as going out and counting people. There’s an old saying - “There are lies, damned lies, and statistics.” Perhaps a better one would be “There is faulty research, damn faulty research, and research based on gut feeling.”