NTs Are Weird

There are a lot of reasons why someone might not use language “normally”. Yet, despite this, it is often assumed that there are two options for someone to communicate: the “normal” way and a given person’s favored solution. I’ve seen this two option approach not just from non-disabled people, but also from people with communication disability (the second option, in that case, is often their option). I’ve also seen a lot of armchair language experts, who haven’t had the benefit of reading even the most basic of literature on communication disabilities - and thus are condemned to reinvent the wheel poorly. Unfortunately, sometimes these armchair language experts are someone’s only hope for communication - so when inferior solutions are chosen, it becomes a human rights issue. Having the appropriate communication tools is a human right.

There are two subject areas someone investigating communication alternatives needs to know about: the different difficulties that people may have and the different approaches to solving the difficulties. I’m going to talk about the different difficulties here, as I believe the solutions are a lot more obvious once it is understood that, for instance, that different people don’t talk (or hear) for different reasons, and thus the approach to providing communication tools may differ between different people.

The most obvious reason people don’t communicate well with speech (expressively or receptively) is for physical reasons. Someone who has their vocal cords removed during throat cancer surgery or who no ear drum will obviously need different means of communication. Even in this group, though, there are significant differences among people - some may be able to make some sound and/or hear some sound - and that changes the approach. The approach for someone with literacy who loses access to some form of communication later in life is different than the approach that is necessary for someone without literacy. And other disabilities still factor in: does the person understand language? Do they have word finding issues? Can they type? How is their eyesight? Etc.

Another reason people might not communicate typically is due to a problem in the interface between the brain and the communication organs (ears, vocal cords, lips, etc). The organs may be typical, and cognition may be typical for this person, but something gets “lost” before communication can be sent or received in a typical way. An example might be severe CAPD (central auditory processing disorder) or some forms of cerebral palsy. There may or may not be other disabilities present, such as motor control issues (someone with cerebral palsy may have hard to understand speech and difficulty using a computer keyboard, for instance).

Other people have difficulties processing language itself. Language is a complex area of cognition, and involves a lot of different mental processes, any one of which may impact someone’s ability to handle language. Some people might have trouble remembering which “word” to use (I put “word” in quotes, because they also may have trouble not just with spelling and sounds of words, but figuring out which abstract symbol or picture represents which word). Others may have trouble with different verb forms, or the idea that something could be past or future tense. Others may have trouble with sequencing and short term memory - two important areas for building sentences and paragraphs, regardless of the symbol set used to represent words.

The good news is that there are communication techniques to give us the tools to communicate, regardless of the reason for our communication disability. But often they are very individual, and what works for one person won’t work for another, even when both people have the same label (”autistic” for instance).

This checklist (PDF format) is an example, used by the Oklahoma Assistive Technology Center, of the types of questions a professional will ask to match communication techniques to an individual’s needs. I think there are some problems with the checklist (specifically, non-performance doesn’t always indicate lack of ability; and the checklist is written only with children in mind), but it gives an idea how complex providing communication can be. It’s far more complex than “If someone can’t speak, give them a speech synthesizer.”

As I watch the disability world, especially the autistic world, I see a rather disturbing trend that reverses much of the work disability advocates over the years have done - a desire to get things as a result of the public’s pity. Sometimes, it is used to such an extreme that some people truly appear unable to grasp the distinction between someone feeling pity for them and someone feeling love for them.

Most of the disabled world has fought against the “I’m disabled, feel sorry for me and give me stuff because this is horrible” by instead saying, “Hey, I have the right to the chance to enjoy life, I don’t have to be miserable. But I will be unless the world interacts differently with me.”

There’s a huge difference between those attitudes. In the first one, the attitude is one that assumes disability must always be something to pity, especially if the disabled person has non-typical needs. For example, if you see someone labeled as mentally retarded, you should feel sorry for them. You definitely shouldn’t see them as someone who can contribute to society, do great things, and be romantically attractive to someone else. No, instead you should feel bad for them, and realize that they can’t be happy in life, so they deserve at least a few things from the rest of us, since we all have it so much better than them.

The other attitude assumes the person labeled mentally retarded has a right to pursue their dreams, and actually has dreams which may be achievable - that they aren’t condemned to always wanting, and may even be, by all measures, having a fuller life than most people - while still remaining disabled. But it also recognizes the human rights struggles that often prevent these dreams from being achieved, understanding that simply interacting with everyone as if we are exactly the same is, in itself, a human rights abuse. It recognizes that this person is someone who may be able to contribute to society, do great things, and be romantically attractive to someone else.

I prefer the second option. Yep, there are other options than I described above, and maybe one that I haven’t seen is even better (there are a lot of us armchair disability philosophers, some of us are better thinkers than others - and I suspect I’m not at the top of this field). The second option still gives us the possibility of happiness. The first does not, it assumes that disability = misery, and it becomes a self-fulfilling prophecy, especially when tied to the idea that misery is what makes us entitled to the things we want in life. We are never allowed to be happy in a pity-based economy.

The pity-based economy (”we should help the less fortunate”) guarantees long-term support only to those who are continually miserable. As a corollary, support is dropped once they become happy. Maybe this explains why social programs are often structured the way they are - provide a person enough help to barely survive, but never enough to thrive. And, sadly, some in the disability community support this idea by promoting their own misery as a reason for their entitlement.

Am I denying that many disabled people are miserable? Of course not. Nor am I denying that, even with the best possible society, there will still be miserable people. We only have to look to neurotypical, non-disabled society to see this - misery can be in many places. But there isn’t a lot of future, in my eyes, for disabled people building a system where only misery gives us the things we need for existence. I’ll stick to arguments that are based on our human rights. These human rights exist even if we enjoy life.

They also open up the possibility of love. Love doesn’t require misery. Pity does. It’s time we ask for an end to the pity-based economy (not just with money, but with all things).

Autistic people face tremendous prejudice in the world. We might not be hired by an employer, simply because we disclose we are autistic. We are bullied in school. We have to fight for our right to eat, if we dare negotiate the world of social services (our other option is often starvation). We are subject to forced, involuntary confinement - and a world that understands that, “of course”, locking more people up in institutions is a good thing (and refuses to understand that there are other ways of meeting the needs of people and society).  We aren’t believed when we tell others about our problems. We are even sometimes murdered, simply for the crime of being different.

So, I don’t mean to dismiss these things - they are real examples of prejudice in the world, and these are some of the main things we must fight against. Any reader of this blog knows I talk about them all the time.

But we also need to be careful. Sometimes an autistic doesn’t get something they want not because of prejudice towards autistics (or disabled people) but for another reason. Sure, it still might not be a good reason, but that doesn’t make it prejudice automatically, either.

I’ll give some hypothetical examples, based on things I’ve seen in real life.

We’ll call a man Mr. Aspie. Mr. Aspie is 24 years old, and just recently received a degree in Computer Science from the university. He did well in his academic studies, and participated in a couple open source software projects over the internet, adding useful blocks of code to the projects. Now, having graduated, he is looking for a job, and applies where I work, for a programmer position. The position asks for several years of work experience.

Chances are, I wouldn’t consider Mr. Aspie - he probably doesn’t have the experience I’m looking for in this position.  Sure, he has some volunteer, open-source experience, and I value that greatly.  But at the end of the day, I am probably looking for corporate experience.  Is that good or bad?  Well, it could be either.  But the reality is that when I don’t hire him, it isn’t that he is an autistic.  I wouldn’t have hired a neurotypical with identical experience, either.  It has nothing to do with his social skills, his eye contact, or his perseverations.  It’s not a sensory issue.  In fact, it’s nothing to do with anything related to autism - it is simply that his resume doesn’t include the things I’m wanting on it.

Yet, I can see frustration and anger when Mr. Aspie finds he didn’t receive the position.  In fact, many people - neurotypical and autistic - are upset when they don’t get a job.  But having a protected disability doesn’t guarantee employment anymore than being neurotypical does.  And there just may be reasons other than prjeudice for my choice.

The problem is that autistic people face prejudice in many, many areas of their lives.  Like others that experience tons of prejudice, we begin to assume that outcomes we don’t like are always a result of the prejudices we fight all too often.  95% of the time prejudice is the cause, so we start assuming that “almost always” and “always” are the same thing - so we treat 100% of bad outcomes as if they are caused by prejudice.

Unfortunately, that 5% of the time is a different cause.  And when we assume it is prejudice, and respond as if it is prejudice, we harm ourselves the other 95% of the time.  We turn people who held no prejudice against us into people who are now seen by us as the enemy - and that causes them to have at least some sympathy for the other people we claim are prejudiced against us, the ones that truly are. We lose the 5% (and many others) as allies when we wrongly accuse people of prejudice.

We need to tred softly in determining the motivations for other people’s behavior so long as another possibility exists, and also recognize that there are often motivations that we may not have even considered as a possibility.  Yes, much, even most, of the time it may actually be prejudice.  But before we label it as such, we should be sure. We can’t afford to lose the battle against true prejudice.

For many of us, accommodations help us function in the world. For some of us, there simply isn’t any way to interact in the world without the appropriate, and active, removal of barriers (in other words, “accommodation”). For others, we might be able to function with the barrier in place, but only at great personal cost. So, we seek to remove the barrier that is in our way.

Yet, despite our need for accommodation, there are many reasons we don’t get what we need. Certainly prejudice plays a huge part in this, but it isn’t necessarily the only reason. There are four reasons I’ll point out here:

1. If we don’t know what the need is, it is hard for someone else to provide an accommodation. You are much more likely to have success with your disabled student office at your university, for instance, if you ask for permission to use a pencil instead of a pen on an exam rather than just show up and say, “I’m autistic. Do something.” Knowing that you are autistic isn’t enough for someone else to know what to do, even if that person is extremely familiar with autism. We’re all too different.

2. If we ask for something others see as a “privilege”, it will be more difficult to be accommodated. Using the university example above, asking for more time on a test that most students have trouble finishing is less likely to be granted than some other requests that may meet the same need for some autistic people. If the problem is one of a crowded room with lots of pen-scratching-paper sounds, asking to take the test in a room without other students is much more likely to be granted - you aren’t asking for something that other students (or the instructor) would see as “special privilege” but rather simply an accommodation. I am not saying to never ask for something seen as privilege, but the highest chance of success in receiving accommodation is in areas that are not “privileges” to others. We need to focus on the underlying need and we need to be willing to accept any accommodation that truly meets that need - the more flexible we are in this, the easier it will be for us to get rid of the things that make our life difficult.

3. Late disclosure of our disability or late requests for accommodation will always negatively impact accommodation requests. When we don’t mention we are disabled until we need someone else to change they way they do things, it may be seen as an “excuse” for non-disability-related behavior. The time to mention that you have a problem concentrating, due to the radio your coworker uses, is before you have any performance problems, not afterwards. For this reason, I make sure my management always knows I have a disability (I’m not always specific about what disability). That lets me say, “Remember when I talked to you after I got hired, and told you I have a disability? Part of that, for me, is that I have trouble with the radio that Mack is playing each afternoon. It makes it hard for me to concentrate on my work.” That’s way better than waiting until after my boss writes me up for bad performance and then saying, “Well, I know that you don’t know this, but I’m autistic and the radio bothers me.” It’s also a way we can take responsibility for our own needs.

4. Nobody likes someone to force them to do something. Employers, schools, and others are no exception. Coming to someone and asking to work with them to solve a problem, especially when they can see how solving the problem will help them personally (for instance, a good employee that says, “I will be more productive if we can solve this problem…”) is much more likely to be met with success than coming to that same person and immediately saying, “You have to make Mack turn off the radio, you’re breaking the law if you don’t.” Instead explain the true problem - not the radio in this case, but rather that noise makes you less productive, then explain the specific issue with the radio, and then that quiet makes you more productive. Then suggest some thoughts you have, but also give the other person a chance to come up with ideas that would work equally well (”What if we moved Mack to an office and had him close his door while listening to the radio?”).

Certainly the law (in the US and many other places) is on our side, and often accommodations are illegally denied. In the law, it doesn’t matter how we ask for accommodation. But at the same time, if I know one method is more likely to get me what I want, why wouldn’t I do that?

I went shopping yesterday at the local grocery store. I noticed they did some minor remodeling since I was last there - in particular, they had a sign on the front door indicating the store was wheelchair accessible.

As a disabled person (who does not use a wheelchair), I take every victory I can get for disability rights. And a store advertising its’ accessibility is certainly a good thing - it’s a business decision for them, and it shows that they see the value in taking our money (it is amazing how many businesses don’t want money from disabled people). (Oh, yes, us autistic people are disabled! But that’s another debate!)

So, I was feeling pretty good as I went into the store, even considering sending the store a letter that I noticed (the grocery business is highly competitive, and keeping a customer means hundreds of thousands of dollars over 20 years or so - so they are a bit more responsive than many businesses to customer comments).

Well, that ended as soon as I got into the store and noted the next “accessible” sign. It was a sign next to a door to the customer service area that indicated it was a bathroom (toilet) with wheelchair access. There was only two problems: First, the door right next to the sign wasn’t a door to a bathroom! Second, it had a sizable step in front of it. So, it was neither a bathroom or wheelchair accessible! The bathroom, it turns out, was up on top of the two flights of stairs to the left of the sign.

One does wonder what some people are thinking when they do things…

Most of us think we’re morally right, or at least a tiny bit morally superior, to at least some other people. There are whole theologies and ethical frameworks built around the implication of what this means, and I am woefully unqualified to give you all the answers here, so I’m not going to do that. But it is useful to recognize that very few people see themselves as truly bad people - even truly bad people (in my eyes) probably don’t see themselves that way.

Perhaps this explains why personal experience is so often used to debate autistic advocates’ points of view.

You can spot the personal experience very easily. The first thing that will happen is someone will state that they either worked or lived with an autistic person. The next thing they will do is give an example, with limited facts, and almost certainly build a straw-man while at it. “What you say about providing support outside of institutions is full of it, Joel. After all, I had a son who needed 24 hour care, and he couldn’t get that anywhere else.” In this example, it is assumed that the only place 24 hour support can be provided is an institution - that it is impossible to do this anywhere except where many people with similar disabilities are housed together, now or in the future. It also assumes that institutions provide 24 hour care (very few do - seriously; 24 hour care is not the same as having staff 24 hour per day).

But, the factual and logical problems with such personal accounts isn’t really the issue. These same debates happen without people using personal experience to bolster their argument, and are routinely discussed as issues of public policy. The difference, the added dimension, when personal experience is employed is the effect it has on ending discussion.

When a parent tells me that the only option they had was 24 hour care for their child, even if other options could be available in the future, and even if I think they did nothing wrong, even suggesting a different service delivery model for the future results in the parent hearing me say that they did something morally wrong. (for reference, I realize that at times in the current environment, an institution is the best choice for someone - that doesn’t mean it *should* be the best choice, a distinction often lost in these kinds of discussions) The personal experience factor causes the discussion to deteriorate into “So you are saying I am evil?” rather than “How could these legitimate issues be dealt with if we didn’t use institutions?”

It’s not just one side of the debates that uses personal experience - I’ve seen autistic people, who support many of my points of view, do the same thing. For example, “I was locked up in an institution and I assure you there is nobody that this serves well.” That may be true, but now that the personal experience is brought in, it is saying, in effect, “Shut up. I know what I’m talking about. You don’t.” That doesn’t help us set policy and change things, either.

It’s not just the area of institutions - educational methods, communication supports, stereotypes about autistic people, accommodation requests, and nearly every other disability-related area generates stories of personal experience. The stories aren’t necessarily bad, and they do sometimes have bearing on the policy debate going on within society. But, please, let’s be careful to keep from stopping the discussion with our stories. The discussion needs to happen. We need to look at the tough things that will keep our desires from becoming reality - and we need to discuss ways to work through them. We also need to recognize that our personal experiences aren’t necessarily seen from a viewpoint that allows us 100% honesty and accuracy.

We also need to learn how to handle those times when the other side brings up the autistic kid in a class they teach (or whatever other personal experience they have), in a way that brings the conversation to a halt. I’m not sure how to do this - I’ve been particularly bad at it in the past, so I am right along side everyone else who wants to learn this.

Autistic people don’t have social skills - well, that’s the conventional thinking anyhow.

Of course this assumes a few things…such as the existence of a coherent group of things you can call “social skills” and the idea that “neurotypical” social skills are the only kinds of social skills.

Of course nearly any autistic person knows that there are plenty of “socially skilled” neurotypicals who lack the basic skills needed to work with autistic people. Yet, if an interaction between one of these people and one of us (autistic people) goes sour, it is assumed that the problem must be the autistic person’s social skills - and almost never a lack of flexibility and social finesse on the part of the neurotypical.

As for the idea that we either have or don’t have a group of things called “social skills,” I was thinking of some of my own strengths today. One of them is very clearly a social skill: I have the ability to remember small details and recall them months later. Now, I think a lot of autistic people are probably reading this and saying, “I can do that too, but I wouldn’t call it a social skill!” Yet, I see it helping me in social situations on a daily basis, especially in my profession. It is what lets me tell one of my customers, “Hey, Is your data circuit still running well since we had the phone company check out the bridge clips in August?” This may be one of a hundred minor problems that I learned about in August, and may even be a relatively minor one. Yet, six months later, I can remember the problem - a problem that likely was very memorable to the customer who experienced it - and ask some intelligent questions.

But that’s not the kind of social skill that seems to matter. No, that is hard to measure and test - it’s much easier to just see if I make eye contact. Yet, somehow I suspect my customers care more about whether or not they can get to the internet than whether or not I look them in the eye!

I suspect we have many different examples of strong social skills within the autistic community. I wonder how many are not noticed simply because we’re looking for failure, not success?

At work, there is a sign that says something along the lines of:

“If the worst thing a man can be called is a woman, what does that say about society’s attitude towards women?”

The sign makes a good point. However, there’s an equivalent happening in our very own community - the worst thing you can call an autistic, apparently, is retarded.

My girlfriend pointed this out to me initially - she noticed that in much of the criticism of remarks made by a TV show character, a character who called autistic people “retards”, the focus wasn’t on the offensive nature of the term “retards” to anyone (including people labeled as mentally retarded), but rather that we weren’t mentally retarded.

It seemed to her (and me) vitally important for many people to immediately and violently distance themselves from mental retardation. Sure, many autistic people don’t meet the diagnostic criteria for mental retardation, and there is an error in facts. But the reaction by many seems to be more anger than simple miscatagorization would typically explain.

I’ve seen a lot of this kind of thing in the last few days - a lot of prejudice from autistic people towards people with other disabilities. I’ve seen a lot of statements about other people’s quality of life (hint: everyone is different, and what is horrible quality of life for one person might be a very joyous experience for another, and neither person is necessarily wrong with their views). I’ve seen a lot about how superior autistic people are to people with other disabilities. I’ve even seen some defend very prejudiced views by appealing to how “obvious” and “common sense” their views are (a common tactic used by racial hate groups, by the way).

We probably should learn to be more accepting of diversity, not less accepting. It just might benefit ourselves, as you never know when you might gain an ally.

Anyone who has worked even one day in a customer service job knows that the saying, “The Customer is Always Right,” was clearly created by someone with no actual experience working with customers! The customer is most certainly not always right.

In autism circles, there’s an equivalent though: The parent is not always right either. And, any autistic person who has parents (I imagine that’s most of us, except those of us changelings that were dropped off by aliens in place of “real” kids) knows that sometimes parents screw up, too. Sometimes even in big ways.

I imagine most neurotypicals can think of things their parents screwed up, too.

Screwing up while raising a kid isn’t always a horrible thing. Certainly, having ideal parents who never make the tiniest mistake would be quite interesting (although I do wonder if it would actually be better - I think finding out your parents are human is a pretty important part of growing up for most of us), but it isn’t ever going to happen.

Why then do autism organizations seem to exist for only one purpose: To affirm the correctness of every action a parent of an autistic child decides to take? That’s why major organizations (Autism Speaks - AS, Autism Society of America - ASA, even the National Autistic Society - NAS) won’t take a stand against treatments they know are harmful, ineffective, a waste of money, or simply quackery. Yet all three of these organizations have the resources to know what the research today says (that is not necessarily the same as having the resources to actually do the research themselves).

Sure, the occasional statement gets made. But for every statement that AS, ASA, or NAS makes against some treatment or parental choice, there are 99 they don’t make. I guess paying members are far more important than the health of autistic people.

We see this online, too. If a parent asks, “If I give my child urine from the North American Bison, will it help his metabolic disorder that is masquarading as autism?” (PLEASE nobody think this is an actual treatment - I made it up, although I’m sure people are going to be molesting bison now to get urine; on the other hand, I suspect the bison themselves have ways of dealing with some tiny human trying to gather urine) If someone replies, “Uh, metabolic disorders don’t look like autism, they look like metabolic disorders, and, besides, nobody’s urine will cure it,” some other parent will likely step up and give a testimonial about the urine (possibly offering to sell some!). At that point, either that parent, or another parent, will yell, “This is supposed to be a supportive group! How dare you question a parent?!” In other words, the parent is always right. Even when they aren’t.

(I should probably link to my favorite cure-parody: Arizona Horse…Feces)

True support does involve telling people they are wrong sometimes. Sure, there are more and less supportive ways of doing that, but simply telling someone they are wrong isn’t the opposite of support, anymore then a mechanic who tells a customer that she can’t replace the blinker fluid is being unsupportive (like useless autism cures, however, there is someone who sells the equally useless blinker fluid - one hopes as a joke: Blinker Fluid from Kale Co Automotive).

So, for the parents getting ready to compose a flame response to my post, telling me about how anti-parent I am, ask yourself this before writing: Is it anti-parent to acknowledge imperfection in parents? Just maybe, just perhaps, pointing out an error is not quite the same thing as being anti-parent in some mythical parent/autistic battle (not that I’m always right either - but I also don’t think someone who disagrees with me is anti-autistic).

I’ve been quite busy lately, which is why I haven’t said much on the blog.

Among other things, I was hired into a new job, where I’ll be supervising a team of 9 people doing computer network design, implementation, and operations. I’m very excited about the job, and am looking forward to the challenge.

Of course somebody somewhere will need to revoke my autism license. After all, surely being part of management violates at least one stereotype…as does a continuing relationship with a truly amazing and beautiful woman!