Accusations of Abuse, Guardianship, and Community Response

Recently, the story of Sharisa Joy Kochmeister has been the focus of much attention in the advocacy community.  And I’ve stayed silent on it, because, frankly, I don’t know the facts of the situation.  But I can’t keep doing that.

My understanding of the background of this – which is open to any and all corrections people may have – is:

  • Sharisa is a 30-something adult
  • From a Denver Post opinion piece (not an investigative article), “The ordeal began in March when her father was accused of abuse when he was seen in a Denver hospital using his finger to clear his daughter’s throat after she had vomited. She kicked him. He pushed her and it was caught on video.”
  • The father was accused of Manchausen by Proxy. This basically means that Mr. Kochmeister was suspected of making Sharisa ill.
  • While the father has not been charged with a crime, the county where Sharisa lives has kept Sharisa’s parents (and indeed most other people) from visiting her.
  • Sharisa is unable to communicate without her father or sister being physically present and possibly facilitating (through actions such as holding a communication device).

Most of the comments, petitions, and advocacy pieces I’ve seen publicly start from the assumption that the abuse allegations are false, for several reasons:

  • People personally know the parents and think they are good people.
  • That accusations of Munchausen by Proxy are often wrong (For instance, in Where is Sharisa Joy Kochmeister, there is a section on false allegations of Munchausen by Proxy with the leading sentence in bold saying, ”Beware the accusation of Munchausen by proxy”).
  • That criminal charges have not been filed against the father.

I’m uneasy with this logic, and I want to explain why. So let me go through each of these three points.

Her Parents are Good People

Perhaps.  I don’t know them, and I’ve known some people I thought were wonderful that turned out to have some really awful, evil parts of themselves.  For instance, one of my best friends in college was recently found guilty of molesting his daughters.  I never would have predicted that, but the evidence was extremely strong and convincing, and I’m glad his daughters are no longer in his care (he is currently serving a long prison sentence).

So I can’t comment on whether or not the parents are good people. I will say that I’m concerned and saddened that any disabled person can communicate only through a very small number of people (or, in the worst case, one).  I am concerned that Sharisa is unable to communicate through anyone but her father, for reasons I’ve written about in general terms elsewhere – how do you report abuse if your abuser is always there when you communicate?

I’m not dismissing her ability to communicate.  But I know that influence, particularly in abuse, and particularly when it’s done by someone who has the potential to do great harm in retaliation, is a powerful thing. And I also know that the vast majority of abuse victims, when asked why they didn’t report that abuse, say the same two things: either they felt they wouldn’t be believed (because the abuser is respected or seen as a wonderful person) or that the abuser can make things worse for them.  We’ve seen both with Cosby’s accusers, who felt they wouldn’t be believed and that Cosby could retaliate and essentially keep them from their dreams in modeling or show business. If this is hard for women who are, in some cases, thousands of miles away from their abuser, imagine what it’s like if that separation isn’t possible.  It’s also not just abuse – imagine other decisions, such as becoming sexually active, deciding whether or not to seek an abortion, or discussing treatment options for STDs – would you want to have those conversations with a parent in the room?  Unless you have a particularly unusual relationship with your parents, probably not.  We are all influenced by people we are around, and that influences what we do and don’t say. It’s one of the reasons it has taken me so long to write this – but it has become too important not to.

When my wife was hospitalized a couple years ago, I remember how I was asked to leave the room for a few minutes, being told they needed room to transfer my wife into the bed. I asked her they did while I was gone, and she said that, yes, they did transfer her to the bed, but that they also asked her if her relationship with me was good and if she wanted me to be there – she was kind of surprised by the questions (I don’t think there was any suspicion of abuse by me, I believe this was asked to nearly all patients). I’m not offended by that in the least – for some abuse victims, the only time they have the chance to be protected from their abuser may be when they are hospitalized, and I thought it was one of the excellent things the hospital does – if it gives just one abuse victim the courage to speak, it is an awesome way of doing business. It is absolutely something a hospital should do. Likewise, it’s important for abuse victims to have means of communicating that don’t involve their abuser’s presence or (real or imagined) control.

Accusations of Abuse are Often False

This simply isn’t true, but even if it is, it does not mean that real abuse doesn’t exist. Too often we hear about children (I’m not implying Sharisa is a child, but most of the time we hear about state-investigated abuse, it is regarding children) that were inadequately protected by the state after abuse allegations were made.

There are cases where Munchausen by Proxy is real – we should not dismiss this as merely claims that the evil state makes against parents of disabled kids. There is evidence that it may be over-diagnosed in cases where the caregiver is not the cause of the illness, and there is a real illness, albeit likely a hard to treat one.

But, there are also real instances where people are harmed by fictitious disorders imposed on them.  According to the Cleveland Clinic, approximately 1,000 cases of reported child abuse per year are related to this.

It is irresponsible for advocates to say that abuse did not occur when they do not have the full evidence. Abuse can happen to anyone, and abusers come from all social strata, all races, all sexes, etc.  It is not uncommon that abusers are well regarded and seen as “the least likely person” to abuse another. So all allegations of abuse must be taken seriously.  In fact, this is something the FC (Facilitated Communication) community has been stressing – while there was controversy regarding apparently false reports of abuse by facilitated communication users, there were also real cases of abuse that were investigated and found to be true, backed up with evidence in addition to the victim’s own words. Allegations of abuse must be investigated, and anyone that says otherwise is not an advocate for vulnerable people.

SOME PEOPLE USING FACILITATED COMMUNICATION HAVE MADE ALLEGATIONS OF SEXUAL ABUSE. SOME HAVE BEEN SUBSTANTIATED.

Some individuals have made allegations of abuse, but there is no evidence that the numbers of allegations by individuals using facilitation is proportionally different than the numbers of allegations made by speaking people. In a survey made at the SUNY Health Sciences Center, it was found for a given time period that of 6 case in which individuals alleged they had been sexually abused, for 4 of them there was physical evidence they had been abused (Botash, 1993). Cases can lead to court convictions (Randall, 1993) and/or confessions by the accused. As with allegations made by the nondisabled population, some allegations may be unfounded and others simply impossible to prove.

The above is from Douglas Bilken, a leading FC proponent, writing “Facts about FC“.  Full citations are available in the link.

Regardless of your views on FC, allegations of false abuse don’t mean that real abuse doesn’t happen. For Munchausen by Proxy, in particular, what is important is whether or not incidents of more severe sickness are associated with the presence of the accused. So there is one question that is relevant here, but which the answer is not known: Have any of Sharisa’s medical conditions improved with the absence of her family? That alone doesn’t prove that abuse occurred, but it can help substantiate that the family is not the cause of any of the symptoms if all the symptoms continue despite the absence of family.

Likewise, I would think it inappropriate to say that Sharisa’s parents did abuse her – most of us (and everyone I’ve seen speaking publicly, with the exception of Sharisa’s family and Sharisa in the presence of her father) don’t have enough knowledge of the situation.  And we should see false allegations of this kind or terrible. Instead, I believe we should say what is logically required: We don’t know.

Criminal Charges have not been Filed Against Sharisa’s Father

This is true – there are no publicly known charges against Sharisa’s father, and is important for everyone to remember. That said, even charges don’t prove someone’s guilt – that’s why we have a trial system. But the American justice system is designed to only convict people when the judgement is that they are “guilty beyond reasonable doubt”.  Thus prosecution may not occur in all cases where a crime has been committed, particularly if a prosecutor believes it is unlikely a jury would agree “beyond a reasonable doubt” that a crime has occurred.

That said, there is a court process that determined Sharisa’s current placement and prevented Sharisa’s family from visiting freely.  We don’t have the information of what was presented at those hearings, so it is irresponsible for us to confuse lack of criminal charges with lack of a crime. Again, we simply don’t know. It could have been a huge miscarriage of justice against Sharisa and her family, but it also might have been justified in light of the evidence. We don’t know.

What Needs to be Done

So, we don’t know if abuse occurred or not. If it did, she should not be forced to live with her abuser. But her opinion still must be respected. People who are competent are allowed to make bad choices.

If it didn’t occur, where should she live? Where she wants to, clearly.

Unfortunately, the county believes she isn’t competent, thus someone else gets to make decisions like where she lives. On top of that, she is only making statements about where she wants to live in the physical presence of someone that may or may not have abused her. This makes it very hard for the county or anyone else that wants what is best for her, and doesn’t know if abuse occurred or not, to know what she truly wants.

I wish she could communicate without a family member in the room. If she could, and the family’s statements are correct about this not being a case of abuse, this issue would likely be resolved.  If she could communicate without a family member in the room, and was as courageous as I believe her to be,  she could affirm or deny abuse allegations. I have long believed that the primary goal for an autistic person’s communication should be that they are able to communicate in a variety of situations, with a variety of other people around, and using a variety of techniques. I stand by that.

But of course it’s not always possible. What is best is not always what happens. Clearly this is one of those cases, and someone’s ability to live where they want to is on the line. If you can’t communicate (which is what the county clearly believes), you can’t direct your life.

She was placed in a nursing home for a while. Nursing homes aren’t the right choice for anyone. I could write more on that, but other advocates have written plenty if you want to know why.

The county must expend the resources necessary to provide an environment as conducive as possible to communication. This means she needs the electronic devices she uses to communicate to be available and maintained. She needs to be assessed by experts who have a presumption of competence. She needs to be listened to when she communicates with ways other than language.

Last week, Disability Law Colorado (the P&A agency for Colorado) issued a statement that said that this is happening, and that the situation is more complex than media and many advocates have said it is. Of course they could be wrong, lying, or have a grudge against Sharisa or her parents.  But they also may be right.

That doesn’t mean we should just trust them and remain silent. We should demand that Sharisa can fully participate in the community and that the State ensures that everything possible is done to allow her to communicate.  The abuse allegations should continue to be investigated: in particular, has any part of Sharisa’s medical conditions shown improvement since her removal from her family? Was the video evidence so strong that it, by itself, justifies removal of Sharisa from her family?

There are lots of questions. And this is not a case of child abuse. When a crime is committed against an adult, and is not a sex crime, the public does generally have the right to know the details, so that we can make informed opinions.

Regardless, our advocacy must be first and foremost about Sharisa and her desires. Not the state’s. Not her parent’s. One side says that her communication desiring to be back at home is either not hers or is influenced by her father. The other side says she wants to be home. What Sharisa wants is what is important – not what her father wants, and certainly not what the county wants. And our advocacy should be focused on making sure she has as much of an opportunity to voice her views without a shadow of influence as possible. I fear that may not be possible, but I really don’t see any other way to get the resolution that Sharisa needs while her communication is being dismissed, as it is now. Lack of apparent influence is important (and I use the term in the general sense – the same thing would likely happen if a person speaking with their vocal cords only talked with someone that was considered a potential abuser in the room – it might even strengthen the case that abuse is occurring). I hope it’s possible and we need to advocate that she be given every opportunity to communicate this way. Starting with 24×7 availability of devices she’s used in the past to communicate and support people that are not making presumptions about her parents. Most of all, they must not presume that she is not competent.

Certainly if you have other evidence that the rest of the community does not have, absolutely use that in your decision making. But the rest of us need to be responsible and to use the evidence we have, realizing we don’t know several really critical pieces of this story. I am not saying her parents have done any wrong. Nor am I saying they haven’t. Because I don’t know, beyond saying we need Sharisa’s voice a lot more than mine in this discussion.

Stored Phrases Should be Banned from Communciations Devices!

Okay, maybe not banned, but close to it. Let me explain.

When most people think of communication devices, they think (today) of iPads and iPhones with communication software.  When they think of that software, they think of two things: First, it needs to speak with a computerized voice. Second, it needs to use cartoon pictures that represent words, or, worse, phrases.

All of this is wrong. One of my preferred forms of AAC is a pencil and paper – it’s cheap, it’s hard to break, not a theft target, with it I can say literally anything I want to say, it allows me privacy, and it works nearly anywhere. Pretty much the current crop of iPad software fails in at least some of this.

I’ve written before about the problems with high tech AAC – but I also recognize there are good things about it (and thus I use it too).  Too often high-tech is used when low-tech is better. For example, at an airport, pencil and paper works wonderfully, while iPads fail for many reasons. Airports are often bright, which makes iPads hard to use sometimes (not always though – sometimes they work fine in the light level). Airports are very loud, so the voice is next to impossible to hear coming from tiny iPad speakers (and the external speakers have extra problems). This means people need to read the screen, which often means handing a $500 device to a total stranger. I can take a paper note with me through the metal detector, but can’t take the iPad with me. Oh, the batteries don’t die either with pencil and paper, and if something goes wrong, replacement parts are available pretty much anywhere for pencil and paper (anyone depending on an iPad needs an iPad in reserve at every location they frequent (school, work, home) – sadly this isn’t something any funding agency understands).

But that’s the problem with the technology. The other problem is the language system used. There are good picture-based language systems (such as Minspeak), and there are also good non-picture-based language systems (such as English!).  What these systems have in common is that they aren’t just stored words, they are an actual system. And the system isn’t just picking and organizing a bunch of words (“core vocabulary”), but thinking through things like conjugation and subtle variations in meaning (“I am going to the store”, “I went to the store”, “I will go to to the store”, “I am in the process of going to the store”, “I’ve gone to the store”, “I am at the store”). These should basically be the same button presses, maybe with one variation in the sequence, if a picture-based system is used. Usually, they aren’t. If you’re using pictures because someone lacks English literacy, you need your pictures to do this. You need a picture language, not just a bunch of pictures with 1-to-1 associations with words.

More concerning to me is stored phrases. I don’t think most adults with language literacy (picture language or standard language literacy) need more than maybe 5 or 6 phrases. Here’s what I use:

  • Yes
  • No
  • I don’t speak but I can hear and understand fine.
  • I use this to talk
  • Thank you

Basically, I have the things I need to answer *very* quickly and I say *a lot* in there.  I don’t have things like, “My name is” or “I like to eat tomatoes” or any such nonsense like that.  I don’t get asked my name hundreds of times a day. I do answer yes/no questions a lot, and I need to explain that I don’t speak but am not deaf a lot. I also get questions about what I’m doing (“I use this to talk”). If I want a food dish with tomatoes, I can take a few seconds to spell that out. I’ve thought about adding a 6th, but haven’t gotten around to it yet: “I don’t understand sign language.” When I visited Montreal, I found, “Do you speak English?” to be useful, but in my normal travels, it’s not particularly useful.

The reality is that most of the things I say can’t be predicted in advance. Sure, I can try scripting them, but one of the reasons scripting sucks for teaching social skills is that people are a lot more dynamic than that. You can’t make the other person follow your script! If you could, stored phrases would be awesome. But they aren’t.

If you have language, do the following experiment to see what I mean. Pick a day to try to use note cards to communicate. Before you go out, write down everything you might need to say. Then try to use them to go about your routine.  Feel free to add cards as needed (take a pencil with you).  Put a tick mark on every card when you use it.  Then, at the end of the day, count up the tick marks and divide by the number of cards – this tells you how often you use a given phrase. First, I bet you will be surprised by how many cards you need to make. But second, you’ll be even more surprised how little you say certain things you thought you say a lot.

Then, the next day, do the same exercise, but take a note pad and pencil instead of note cards. I bet you find this more convenient.

So why the focus on stored phrases? It’s two-fold. First, most people who historically used communication devices could not speak because of motor control issues (for instance, Cerebral Palsy). That’s who governments would buy expensive devices for. The biggest complaint then (and still to an extent now, even among people with relatively standard motor abilities) is the slow speed of communicating using a keyboard or touch screen or scanning interface (particularly for a scanning interface). If you can only get one word out every minute, you try to maximize your throughput – and so do the people who are waiting for you to finish your thought (often for selfish reasons). So stored phrases seem like a quick win! That’s where real language systems come into play – how do you give someone flexibility in communication at the same time you give them speed? You don’t use stored phrases. I will also get to a second point in a minute (talk about speed of communication…) – about how this doesn’t apply in the same way to many autistic people using communication devices that are properly specified for them.

Second, people think stored phrases are easier for people developing language. In some cases, that is true – but primarily as a language motivator. If you have a funny joke or useful phrase programmed into your device, and it comes out as language, you see the beauty and significance of language. It can be very useful in those situations, particularly with beginning language users.

But, for people who already have language, I’m sick of the focus on stored phrases and icons. We need to focus on the actual problem: slow communication speed. And that means an actual evaluation of the person’s abilities, not trying to find the fastest way they can use whatever the sexy technology of the day is (iPad / iPhone). For me, that’s a keyboard – I can type 100+ words per minute on a good quality clicky keyboard (the click is important – I need the auditory feedback and rhythm – most keyboards suck for that today, because they’ve gone to great lengths to become quiet!).  For a lot of my fellow autistic people, I suspect they could type quickly too. Clearly not everyone can – and for people that can’t, appropriate input systems need to be considered. That means I don’t do great with an iPad! That’s okay (laptops are good and cheap these days).

But with typing being a potentially 100+ WPM input method, it needs to be considered more often. Studies show that at these speeds, word prediction, word completion, and stored phrases actually slow down the input – it’s quicker to just type the word than to cognitively process it, particularly in the badly designed systems that vary the placement of words in selection lists over time based on how you use them (thus preventing you from developing a muscle memory for the word). A good system, even if it isn’t used by a 100+ WPM typist, develops muscle memory. Even for slow input speeds.

In addition, the act of trying to scan a page to locate a word among a bunch of pictures or a completion list interrupts the communication process if I already know the word I want to use! And, for me, the biggest problem with speaking is that my own words interrupt my thought process. So I want to minimize interruptions, not add to them (“Okay, I want to say ‘store’, but I have to now find where the word is, and once I find it, I have to remember what came next”). That’s where muscle memory comes in – whether it is a picture-based system or spelling system. But typically stored phrase/word systems pay little attention to muscle memory (hint: if the layout is completely different for the person on their device at age 30 than it was at age 3, it’s probably not developing muscle memory). Anything that involves searching to find a word is a problem in this regard.

That said, I’m not the same as other people. My problem is that I need to say what I’m saying without internal or external interruptions (something very little literature discusses). Other people might have, for instance, word finding problems without working memory problems – for those people, I can see a well organized vocabulary, in a language system, as very helpful. But it still needs to be a language system, not just a list of words or a group of cartoon icons associated with words and phrases.

Finally, my biggest problem with most systems that don’t have complete vocabularies or which rely on stored phrases is that it becomes very difficult to tell other people about abuse or personal issues. How do you tell your girlfriend what you like in bed? Or how do you ask a doctor about birth control? Or tell a dirty joke? Or how do you say, “My mother (or speech therapist) is sexually abusing me?” when that person has access to your device too? You probably don’t want stored phrases available to everyone for these. There are some solutions to these – I believe any system that uses stored phrases needs to be user programmable, and there needs to be the capability to set up locked pages that nobody but the user can access (for instance, protected with a timed password). I’ve written software that does that and I’ve made sure to donate those ideas to the public domain – they are prior art and any vendor can implement them without concern over patents or copyrights. By allowing users programming access, you encourage experimentation with language and the communication of novel thought. That’s a good thing. What I hear from speech language pathologists (SLPs) is, “But the kid might screw up the programming.” Yep. That’s why you have a backup, and a good system lets you restore pages independently of each other and merge backups and the device’s changes selectively.

In closing, I don’t mean to say if you use stored phrases and they work for you that it is a bad thing. But I do think they are often used without a complete understanding of communication – since you understand how you communicate, feel free to use them when appropriate!

Why I Didn’t Drop Out of High School

I was watching a news program about an “early warning” system to detect kids who might be in danger of dropping out of high school. What shocked me is that they described much of my school experience – I fit those signs.

For instance, they talked about two key signs being poor academic performance (such as failing a core classes and abysmal GPAs – both of which fit me) and frequent absences (I was gone typically around two months of each school year).  So, on paper, I was in danger of dropping out. In reality, that probably wasn’t going to happen, however. And I think they missed some stuff, that schools can do better.

Conventional wisdom is that for students to do extra-curricular activities, they should have their core education under control. If you’re on your high school football team, you’re expected to get signatures from all your teachers that you have a certain grade average in the class.  Do too poorly in school, and no play for you. You don’t get the reward. This is a horrible practice!

It’s horrible for a few reasons, and thankfully they didn’t think of making someone doing, say, science fair projects (something I did well at and enjoyed) prove that they were passing classes.  My school sucked – I was being asked to exercise executive function I simply don’t have (and not through laziness or not being exposed to study skills instruction or any similar hogwash).  I wasn’t going to pass a non-modified high school curriculum in the 90s (fortunately, they did modify it somewhat for me to let me graduate).  In addition to the tremendous executive skills required (time management, studying, knowing what actually needed to be studied and what didn’t, homework, remembering books and other supplies, and whatever other things were needed), it was also a miserable environment. Who would enjoy a place where they are physically, emotionally, and sexually abused? Who would possibly do good in that environment?

So I had my joy in my extra curricular activities. If the school was more progressive, they would have recognized a college-level research paper probably proves I can write and that doing calculus-based statistics proves I can do math. But they didn’t. So I struggled with my classes. But I still got to do the things I loved about school. I wouldn’t have if they actually applied the standard they applied to the jocks, which concerns me: What if my love was football, not science? Would they have taken the one positive thing about school away from me? Where would I be today?

I’m sure the carrot of “You can do the thing you love if you work hard in your classes” works for some people, and can be powerful motivation. It is in my life. But it’s only powerful motivation when that thing is achievable. I had barriers I couldn’t overcome by willpower. It wasn’t motivation. It was that school environment I had was completely inappropriate to my educational needs. Without fixing that environment, no motivation could solve the problem. I needed to be in a place where I wasn’t abused and the things asked of me were things I could do.

I remember my PE classes in Junior High – one thing we were expected to do, and got a grade based on, was climbing a rope. I can’t climb a rope. I was lifting weights at the time, doing push ups, etc, during my spare time, trying to get strong enough to do something unrelated to school. But despite that, I couldn’t climb a rope. No matter how much I tried, I couldn’t do it. It’s not that I didn’t want to do it, or that I didn’t know how to do it, but simply that I can’t do that. Nothing changed that, even things that would normally be suggested (physical training).  I wasn’t overweight, and I was doing strength conditioning. Yet, I couldn’t do it. It wasn’t, “Joel doesn’t want to climb the rope.” It was “Joel can’t climb the rope.”  And you could give me a failing grade on rope climbing, but it wasn’t going to change anything. A lot of my academic classes were similar: I was being asked to do things in a way that I could not do, and then given bad grades for doing badly at those tasks. The ironic thing is that “those tasks” actually had little to do with the actual subject. I was getting bad grades not because I can’t write or do math, but because I couldn’t manage my time, figure out what is important and what isn’t, do my homework, and return the homework, all while being beat on, raped, and humiliated. Go figure.

So, somehow, I slipped through the cracks and got to do the things I loved without being forced to do the impossible. Why would we take away the one thing a kid loves about school (for instance, an extra curricular activity) to motivate the kid to do better in school? That makes no sense. Yet it’s conventional wisdom. To this day, I don’t know if this didn’t happen to me simply because God was looking out for me or because some teacher/administrator saw the problem and helped me, without my knowledge, subvert the oppressive system. Whichever it was, it was a miracle.

Fortunately, people thought I was smart, even though I was failing courses – I was lazy and unmotivated, but smart in their eyes. So I got some slack for being smart. And that helped me get through high school – occasionally some teacher would notice that I was capable of learning. These teachers made a huge difference. The ones I’m thinking of gave of their own time and energy, to give me things I enjoyed about school and to help me avoid the problems I was having. Every one of them broke the rules of the system – and I’m exceedingly thankful that they did. I think back to a computer teacher (I never took any of her classes!) who would write me a pass to get out of class if I needed to get out of class, so I could work on the school’s network – it was the start of what got me into my current field, where I’m part of a team that runs one of the largest networks on the planet. I loved doing that, and having a break from class sometimes let me recharge and focus on other classes in the day. It gave me a break (in addition to being the key to my success in my career). And I needed a break. In fact, the year I had this opportunity, to basically be allowed to skip any class I wanted (my senior year), I had better attendance than any other year, I passed all of my classes, and my GPA for the work I was doing was among the top in the school (my other 3 years of work was so bad that I still graduated in the bottom 25% of my class). It was also the same year that my mom realized what was going on and would write me an excuse to be absent from school if I wanted (she conditioned it on me passing classes). I think I only had my mom write two notes. I didn’t need a lot, and I didn’t want to fail. But I needed some help. Who would have thought letting a kid skip classes would help? That certainly doesn’t fit conventional wisdom. But paradoxically, it actually increased my attendance when I could choose to not attend when I wasn’t up to doing so, rather than having to wait for my body to give up and contract a significant illness.

But what if people didn’t see this? What if I wasn’t seen as lazy and unmotivated, but just “dumb?” What then? I worry about those kids. They need allies too. Or they will drop out. Just like I might have.

That said, my school wasn’t completely clueless. They let students who failed take classes in summer school. So I did, right before my senior year. And – imagine this – the format of summer school was “Go read the book, pass the test.” I could do this. I learned more world history in a week (that’s all it took for me to pass all the tests for World History) than I learned in the year of failing it in my freshman year. It was a learning style that suited me. I wouldn’t say it was easier (I don’t believe it was, despite the school obviously wanting to get people through these classes), but it was better suited for me. An added bonus of summer school? Those kids didn’t abuse me. Don’t ask me why they didn’t, I don’t know. But they didn’t.

Finally, a final piece in the puzzle, was the idea that I wanted to get out of my town. To do that, I was going to need to do college, so I had a reason to leave, and some support to do so. Leaving my home town was the best decision I ever made. It’s why I’m alive today. And that was a powerful motivator: stick through high school. My parents wouldn’t have supported me at all in doing this if I was doing it for a reason other than college. And to do college, I needed to finish high school.

There’s a common theme here: I could succeed when my disability was (unknowingly) accommodated and when I wasn’t being abused. Self-study and having the opportunity to have a break helped tremendously. And then having people that broke the rules helped, whether they did so intentionally or not. I had things to look forward to at school despite this. And that’s a pretty huge motivator when someone who is being abused at school can say there were things he looked forward to doing at school.

I think back to that and think, “Why couldn’t all my classes be self-study, with support when I need it? Why couldn’t I have a down day when I decided I need it? Why couldn’t I have a place where I wasn’t tortured and raped while being expected to learn?” I probably would have been an outstanding high school student if those things were different. That said, I do think I have some right to be proud that I made it. I never saw myself as a potential high school drop out, but even without that risk, I’m proud to have survived school. I know I’m strong and able to succeed. It could have been very different, and without just a few small things, I might not have had enough hope that my strength would have been sufficient – and I recognize that not everyone is as lucky as I was (and, despite being abused and placed in a horrible environment, luck and good fortune were a huge part of why I could survive), nor do I think someone who doesn’t make it is any less smart or motivated or strong. You can’t measure things that way.

But everyone in my situation – anyone who faces abuse, an inappropriate environment, illness, etc, even if there are some good things happening and there is some hope – it is something to be proud of when you accomplish it. And I hope that our education system is getting better, that we are making progress. Let’s not take motivation (such as extra-curricular activities) away from people to “motivate” them. Let’s not force people to learn in one set way, when that way is demonstrably inappropriate. And let’s find ways that we can give a break or hope to someone who needs it.

Mass Murderers Might be Autistic – and Why the term “High Functioning” is Discriminatory

As most people probably know, a few days ago a man murdered 6 people and injured several more.  The murderer may have been autistic.

Before I go any further, I want to note that I recognize the horror of what happened in California and am very sad for what happened to the victims and their families. I do believe the entire autism community is united in this aspect and feels the same way.

One of the first reactions of any community, including the autistic community, when something like this happens is to want to distance themselves from the evil person. Some of this is in the form of, “We are not like that!” That’s valid, and true. Autistic people are less likely than average to commit violent crime (and more likely to be the victims – so we’re not the ones that someone needs to be protected from, we’re the ones that need to be protected from someone else).

But, there’s also a darker response: “He’s not autistic.” I can’t accept this knee-jerk response, as much as I do wish that the murderer is not autistic. Sure, we don’t know for sure that he was autistic, and that’s fine to point out in some limited contexts (but not as a way of saying, “So autistic people are okay”). Whether or not this murderer was autistic, the violence he displayed was something that isn’t part of autism, nor is it part of any number of other things (such as being a man, being a college student, being a gun owner, being a white sort-of-well-off kid). But it certainly isn’t part of his autism. That doesn’t mean he isn’t autistic, though.

We have good and bad people in our community.  Just like there are good and bad men, good and bad college students, good and bad gun owners, good and bad sort-of-well-off people. And I do believe we can and should judge individuals as individuals. And, yes, I recognize that there is typically a power – privilege if you like – differential between men and women, whites and people of color, sort-of-well-off people and poor people. But there’s a huge difference between being a member of a group that has social privilege and being a bad person. I’m not saying that privilege doesn’t exist or people shouldn’t be aware of it, but I am saying that it’s not a moral failing to be a member of such a group!

But, back to the autism, we can (and, in fact, should expect we have) bad people in our community. There’s a lot of myths that autistic people have perpetuated about how we’re beyond deceiving people, honest, trustworthy, kind, and any number of other positive things. But we’re not. I’m not saying we’re dishonest, untrustworthy, unkind, liars, either. We’re neither of these things, neither angels nor devils. We’re like everyone else: we have good things in each of us and also some ugly things in each of us. We’re not beyond jealousy, greed, or malice. We have good people and bad people in our community, and we need to recognize that. It’s a mistake to think a group I am part of is better than another group. It’s a mistake that the murderer in California made, one that fed into his evil acts – he felt he was better than the men and women he murdered. Obviously the rest of us have a different opinion. Autistic (or Aspie) supremacist stuff is bullshit.

But, when the “angel theory of autism” isn’t being used to try to discount the murder’s potential autism, another ugly belief pops up: that the murderer was too functional to be autistic. The logic is, essentially, “He was too high functioning to be anything like most autistics. He could talk normally, he could go to college, he drove a car.” Whether or not this leads to someone saying he wasn’t autistic, the point is the same: if you drive, go to school, and talk, then you’re not like real (phrased as most) autistics.

Two things lead to this: first, people have limited experience with autistic people. They may only know one or two, often children. And the person they know probably doesn’t go to college, drive, and may have obvious communication differences. Of course the person they know might only be 6 (how many 6 year olds go to college or drive?), but none-the-less when someone thinks of autism, they think of what they know. If the person they know is an adult that cannot do these these things, too often it is assumed that others are like this.

The other problem is that people think the world works as follows:

Two arrows, one pointing left, one pointing right. The left arrow says "Low functioning" and has, under it, "More Autistic."  The right arrow says "High Functioning" and under it says "Normal"In other words, there’s a line on which we can place autistic people.  There are middle-functioning people in the middle, still clearly autistic, but in the middle of autistic. There’s a few geniuses like Temple Grandin off to the right, approaching “normal” and definitely “high functioning”, and there is a bunch of people on the left who are more affected and thus “low functioning.”

But that’s all bullshit.

You might be able to draw a line like the above for one very narrowly defined skill. But it has to be really narrow. For instance, we all know there are good and bad car drivers. Some people are just plain better at it than others. But is it even that simple? For instance, someone might be great at driving on-road, but horrible driving a jeep on an off-road trail. Are they a low functioning driver?  Probably not. Or they might be fine driving during the day, but not at night. Or they might be great in a city, but easily fall asleep on a rural highway. Or they might be fine driving a little compact car, but totally lost if they are asked to back up a truck with a 35 foot long camper attached. They might be better at driving fast, but is someone that frequently exceed the speed limit a high functioning or a low functioning driver? Where would you be on the line (assuming you drive)? It probably depends on the situation and environment – I suspect I’d be pretty far to the left, near low functioning, if you put me in the cab of a tractor trailer, since I probably wouldn’t even know how to release the parking brake. But maybe I’m pretty far to the right when it comes to backing up a trailer (I can usually get into a tight spot on the first attempt easily). I’m probably somewhere in the middle for most tasks. So, am I a mid-functioning driver? Would you say the same thing if I said I am a professional tractor-trailer driver who can’t release the brakes (but is, on average, mid-functioning considering other skills)? Probably not – context matters. We probably need several lines, for different skills, like “Winter Driving”, “Trailer Backing”, “Tractor-Trailer Brake Operation”, “Night Driving”, “Rural Awareness Maintenance”, and “Speed Limit Obedience.”

Life is a whole lot more complex than driving a car. If we can’t just give one score on a continuum to a driver, imagine how much more complex life as a whole is!

I’ll use myself as an example. I have no problem driving a car most of the time (I can’t say I’m perfect, but I’m not a “low functioning” driver either). I attended college, even obtaining a degree. And I do talk.

Of course what this misses is that of these things, the only one I’ve done without significant difficulty is driving. For whatever reason, I’m comfortable operating pretty much any vehicle I’ve had a chance to operate, from bicycles to aircraft. I’m not sure why, considering how uncoordinated I am with most other things, but I can manage motor vehicles just fine. But the other stuff is definitely difficult.

Sure, I attended college. And it only took about 16 years for me to get my degree. I received a 4.0 average my first year. My second year saw me on academic probation. What happened? It wasn’t the material – I could and did understand the material. Trying to keep everything together for over a year was too much for me, and I was loosing the ability to handle all the daily activities of life. Sure, I could force myself through it – and did – for a while. But eventually that catches up. I don’t know many non-autistic college students that had grades decline as steeply (I do know several autistic students that have). I ended up dropping out, only returning a decade later when somehow I was willing to try to force myself through the process again. This is hardly “high functioning.”

I could talk about speech, but I won’t now, other than to say I had similar difficulties and still do – it’s why I still own and occasionally use speech generating devices.

But there were the other areas of my life too. I didn’t eat for a week when I started school, because I didn’t know where the cafeteria was. I was getting a 4.0 GPA at the time, but couldn’t find where the food was kept.  After a week, I was barely functional from hunger. Yet I couldn’t do the obvious thing: ask someone. Eventually, I ended up stalking another freshman for a few hours, figuring he’d eventually eat (fortunately, he did eat in the cafeteria). Food was a problem throughout my adult life, until I got married (my wonderful wife cooks for me – something that is a tremendous blessing after you’ve lived years of your life dangerously underweight because you lack the ability to manage this task yourself).

But I was high functioning. I went to college. I drove a car.

That’s the thing with autism (and, in fact, humanity). Having skill in area X doesn’t mean I have skill in area Y, even when it looks like X and Y should be reasonably related.

Sure, we like to be able to categorize people. We think there must be some difference between that kid we say is low functioning and the high-functioning examples of people like Temple Grandin. And certainly there is a difference – the obvious one is 50 years of age. But, beyond that, autism isn’t about being good or bad at any one thing. It’s about having a set of abilities that doesn’t follow the normal neurotypical model, and this goes both ways. I don’t have the research handy, but I know some researchers have found that autistics with low measured IQs, typically part of the group that is considered low functioning, share, with their higher measured IQ autistic peers, an ability to do certain types of intellectual processing that far surpasses that of neurotypicals. Of course neurotypicals far surpass both groups – the “high” and “low” functioning groups on other tasks. It’s not about better or worse, higher or lower, but rather different.

When people think of the California murderer, and think, “But he’s too high functioning to be autistic,” they are closing the doors to life-saving daily living services that some people need. They are deciding that autistic people can’t learn skills A, B, or C. They are ignoring decades of research. They’re also ignoring the tremendous variance between individuals, even when those individuals are all called autistic. We’re different, with vastly different skills. One autistic person might not just be able to drive a car, but could be a successful race car driver, while another would be a tremendous risk to traffic if they got behind the wheel. That doesn’t mean one is more autistic than the other. It means that one is a shit driver, while the other may be great. But still autistic. Yet others may have tremendous talents, but because they can’t do some random unrelated task, it’s assumed they wouldn’t be able to do whatever they are talented at doing. They’re “low functioning” after all. Well, that’s bullshit. Don’t dismiss us as non-autistic because we can do something, don’t assume we have other skills because we can do X, and don’t assume that we can’t do something because we can’t do X.

If you think you can put autistic people on a functioning line, from high to low functioning, you just don’t know autism.

Motor Delays and Autism – And Seeking Competence

In the last week, there has been press about a study on very young autistic children. The study claims to show that both gross and fine motor skills are delayed in autistic children. This is neither a surprising finding nor a new finding – although looking at children this young (14 to 33 months!) may be. One does wonder how a 14 month old child can be diagnosed with autism.

A soccer (football) ball. This is something I could not interact with in any sort of interesting way. I still can't. Licensed GNU Free Documentation License 1.2. Credit goes to Sir James and Christopher Bruno via Wikimedia Commons.

A soccer (football) ball. This is something I could not interact with in any sort of interesting way. I still can’t.
Licensed GNU Free Documentation License 1.2. Credit goes to Sir James and Christopher Bruno via Wikimedia Commons.

But, regardless, it’s well known that autistics usually aren’t particularly athletic or coordinated. Certainly, not all autistics (there probably are autistic professional athletes), but enough of us are un-athletic and uncoordinated that it’s part of some diagnostic criteria.

For me, I know I can personally speak of two issues I have – the first is simply getting my body to do what I want it to do, in response to sensory input, fast enough.  That’s always been an issue, which I believe affects my fine motor skills in particular.  But my second issue is something I suspect may be less common among autistics (but certainly not unique to just me) – a general lack of any reasonable voluntary “fast twitch” type of muscle movement.

The first is why it took years for me to handle handwriting (I’ll note that when I started getting the hang of it and started learning cursive, I actually got rebuked by a teacher for learning a letter that I wasn’t formally taught yet – and people wonder why our education system stinks!).  The second is why, to this day, I can’t do anything that requires fast movement, even if it doesn’t also require processing lots of sensory input.  For instance, I can’t hit a punching bag hard or kick something hard.  I certainly can’t throw anything.  I was always last in my class for running.  I can’t jump high or long or whatever else.  Yet, at least for my lower body, it isn’t because I lack strength – I have very strong legs.  It’s because I can’t do anything with muscle movement quickly.  When you combine sensory processing and fast movement – hitting a ball with a baseball bat – I am hopeless (I’ve never done this – and I did try!).

There’s also a third issue – my upper body is extremely weak, and seems to resist muscle mass building (I spent three years lifting weights – never progressing on the upper body, despite good training advice and plenty of change in my lower body).

I was sort of lucky, in that I had lots of what would now probably be called sensory integration therapy as a child to help with coordination and such. I’m not sure how much it did or didn’t help me, but certainly I had lots of it. But they missed something: there were things I was good at.  I wasn’t miserable at everything, just miserable at pretty much everything you might do on recess or in physical education class.

But I was good at some things – I’ve always been good piloting pretty much any type of vehicle. It took me a while to learn how to ride a bicycle (probably because I believed people’s explanations on how to do it – which research has shown conclusively is generally not only hogwash, but which is actually impossible to do – read about countersteering – and never mind training wheels encourage this bad learning). And certainly with other vehicles, there was a learning curve – it’s complicated to learn to drive, for instance. But I learned at a fairly typical pace. And this is true with other vehicles too – I can do basic plane flight (and did a substantial portion of my flight training, but, sadly, ran out of money at that stage of my life!), motor boating, motorcycling, ATV riding, etc.  I can tow – and reverse – a trailer better then most people I know.  Obviously these things require motor skills.  So why can I do this?

Well, a lot of this is stuff that doesn’t require a lot of fast movement. That said, the countersteering movement needed on a bicycle or motorcycle is a pretty quick movement. But, in general, slow and smooth is better for these things. Sadly, I think the common expectation is that someone with poor coordination couldn’t possibly drive a car (and certainly couldn’t fly a plane!). This coordination thing is seen as a global sliding scale, applicable to all areas of coordination. Yet I remember learning to ride a motorcycle in motorcycle training – I had significantly less trouble than many of the other students, despite the fact that it was likely that every one of them would be rated as having more coordination than me, in a general sense.

My wife has a theory – and I have to agree: that we’re often good at things that people expect to need to be taught, but bad at discovering how to do things on our own that other people might learn “automatically.” Obviously, I know I can’t be taught some things, and I’ve also made plenty of discoveries – how to walk, for instance (I started walking at a very young age – the only milestone I met early).  Bicycling is another one that I learned by discovery on my own (much like most people do), albeit years slower than my peers (my peers figured out countersteering subconsciously, as I eventually did too, but it took a lot longer). But riding a motorcycle was a quick and easy process for me. So was learning the basics of flying a plane. I did better than average at both.  I could succeed – and actually get quite good at these things.

I think this is where the adults in my life failed when I was a child. There were things I was or could be good at. In Junior High, I remember running a mile and a half in a time that beat the vast majority of my classmates – as a result of personal conditioning I was doing at the time. I wasn’t the fastest kid, but I wasn’t the slowest either. Because the teacher was so used to seeing me in last place in everything, he actually accused me of cheating and made a point of counting laps the next time we ran (he found I was being honest; no, he didn’t bother apologizing). He assumed that because I couldn’t sprint, I couldn’t run longer distances – yet I had plenty of strength, endurance, and an efficient cardovascular system. I had what was needed for long distance running – not at a highly competitive level, but certainly substantially better than average. This was missed. So were so many other possible areas where I could be successful.

That’s part of my concern with the idea that autistics are just uncoordinated. Maybe we are. But that doesn’t mean that we are in everything. I would hope that when parents, teachers, and therapists work with us, they would not only look at our weaknesses, but also our strengths. For children with low confidence and too many failures, having an adult recognize someone’s strong abilities is important. Giving us a chance to, if not win, at least make a good showing is important. I was last in pretty much every sport – because the sports I was good at weren’t what we did in school. That sucks – it certainly (along with PE teachers that shouldn’t have been anywhere near a child) made me hate athletics with a passion.

Fortunately, I made these discoveries on my own – I do have skills that were unrecognized, and which I developed despite neglect by people who should have been able to see them. It’s my hope that one day it will be the goal of adults in the lives if children to not only find things where the autistic child does bad, but also find those areas to grow and nurture where there is natural talent and ability. There is a lot more here than too many adults & professionals think. And of course this is true well beyond simply athletic ability.