Euthanasia and the “Burden Meme”

I just found out that a man suffering from cancer killed his demented wife and then himself to prevent her from being a “burden” on their children after his death. Wesley J. Smith comments on the case over at Secondhand Smoke. He writes:

The message that it is worse to be a burden than dead is being broadcast and received–and stories like this tragedy, I believe, are a direct consequence. It’s a very scary time to be old, disabled, or needing care.

That sounds dramatic. Too dramatic, in my experience of being a person with disabilities. It isn’t like every nursing home or institution resident is greeted by a nurse: “Oh, you want me to change your diaper? I’ll gladly do so if you take your [deadly] pill first.” That sounds ridiculous, and it is. This is why I become angry when pro-life activists, including Smith, say that the Netherlands have become a “nazi” country. The ridiculous statement I just made is among the things the nazis did to their disabled people, and it is not what happens anywhere in the world, and if it did, people everywhere would call for harsh legal penalties. Yes, including in the Netherlands.

But this is not what worries me about the “burden meme”. The changes in practice that are likely to spring from this cultural shift, are likely much more subtle. There have already been cases where insurance would pay for euthanasia, but not for (expensive) treatments that could save the person’s life. This may get worse as our medical knowledge increases and we are more able to keep people alive, at a higher cost to society. It is, after all, a fact that disabled and elderly people are expensive if they need care.

Expensive. Even without any reference to euthanasia or even being a burden, the system already makes it quite clear that elderly and disabled people are expensive. This expense is the reason not eveyrone goes into a care home anymore when they’ve reached the age of 65. Rightfully so, in my opinion, but it now goes farther than it should go. People receiving long-term care, especially those who aren’t supposed to fall within the groups it was “originally intended for”, are often classified as “expensive”. Long-term care was “originally intended” for people with severe developmental and physical disabilities or advanced demtnia. I am, therefore, one of these “expensive” people the long-term care system wasn’t “originally intended for”. I know what my former locked ward placement cost, because my insurance company paid the first year and sent me a transcirpt of the healthcare services it’d paid for (so that it could tell me that I had to pay them E155 in deductible, LOL). People with terminal illness are also judged to be “expensive”, as it used to be quite hard for them to get funding for palliative care beyond I think either three or six months, should they unexpectedly survive this long. Yes, I know that medically speaking, they wouldn’t have been considered terminal in that case, but so far, doctors are not able to predict the exact date someone will die unless they choose euthanasia. Fortunately, that legal loophole was fixed, so people with incurable cancer are not forced to get euthanasia once their funding runs out.

Of course, there are sitll people who refuse to accept services that do exist. We do not know what happens to services for demented people in the UK in the future, but the wife in the news story could’ve gotten home care if her husband wanted it. This is where being a burden in other than financial was comes in: people with severe illnesses are an emotional burden on their families, supposedly. With the fact that, even if professional care was accepted, the husband would’ve been expected to help unless he obviously couldn’t due to his cancer (at least in the Netherlands), it is unlikely that the “burden” wouldn’t exist if the husband just accepted help.

Besides, even if the wife were able to get all the home care she needed, it is currently considered significantly burdensome to watch someone else suffer. I guess in this sense euthanasia is what exclusion was in the times of leprosy-stricken beggars and institutionalization was in the times of, well, mass institutionalization. Maybe these were the results of the “burden meme” back in the day.

Should Forensic Psychiatric Inmates Have Sex?

Today, a new documentary film came out, entitled Longstay. Longstay refers to long-term care units in forensic psychiatric institutions, where criminals with severe, chronic mental illness are detained, sometimes for life. The film stirred controversy, because it asks the question whether inmates of longstay units should be offered visits from a sex care worker, ie. a prostitute who offers her services to people in the care system. For your information, prostitution is legal in the Netherlands, so that is not an issue.

The main concern in this situation is of course the question of safety. How will the sex care worker be protected from potential harm done by someone with a history of serious crime and a severe mental illness? After all, the reason these people are in longstay, is that they are judged to pose a threat to society. However, if you look at it that way, how is the safety of the institution staff guaranteed? It isn’t like all people who committed a serious crime and have a severe mental illness, are at risk of sexually offending someone, and if they are, there is no reason they should be waiting for a prostitute. You might theorize that being permitted to have sex, would reinforce some people’s sexually inappropriate behavior. However, for some others, *not* being permitted to have sex for maybe several decades, may worsen sexually inappropriate desires and fantasies, and thereby increase the risk of inappropriate sexual activity. Besides, if you think that currently inmates on these units don’t have sex, you’re dead wrong. My inclination is that a sex care worker is more able to set boundaries than a fellow inmate.

I don’t think that everyone should be permitted to have a prostitute come over to them. After all, you wouldn’t want to have it happen that a convicted sex offender, whose staff knew that he had active sexual fantasies/desires that were inappropriate and that he might act on, ended up raping a sex care worker during the visit, because staff felt the sex worker’s safety was less important than the offender’s right to have sex. But then again, as I said, not all convicted criminals (not just sex offenders) with a serious mental illness are at risk of sexual offence. Whether the sex care worker’s safety can be ascertained to an acceptable degree, should be decided on an individual case basis.

Professor of forensic psychology Corine de Ruiter commented on the issue that having a prostitute come over would also be harmful to the inmate. The arguments she used, however, were quite bizarre: she explained about inmates who had been subjected to sex with a stranger as part of their treatment, so-called “intimacy therapy”. Now I might hope the inmate gave consent for this “treatment”, but even so it is quite different. It just isn’t the same when you have sex as part of “therapy” than when you have sex for the pleasure of it. Besides, “intimacy therapy” is provided to people with sexual disorders, most of whom sexual offenders. If they end up with a sexual addiction from the “therapy”, as De Ruiter claims, it isn’t certain whether they were at-risk sex addicts to begin with.

A last concern raised involves the fact that the sex care workers coming to these institutions, would be paid from tax euros. However, prostitutes have been coming into prisons to have sex with inmates for years, and I wouldn’t know what else they were paid from than taxpayer money. You may disagree with that, but if you don’t, I can see no reason to oppose taxpayer funding for prostitutes to come to longstay units. In fact, I personally object more to prostitutes coming to prisons – which are supposed to have in part a punitive function -, than to longstay units, which serve to protect society from severely mentally ill criminals. By the way, how have these prisons solved the safety issue? After all, there is no reason to assume that prison inmates are not at risk of harming prostitutes.

Who Decides What “Quality of Life” Means?

Over the last few days, I’ve come across a few blog posts on the subject of quality of life, as it relates to euthanasia and assisted suicide. Note here, that my opinion about assisted suicide and euthanasia is not based on some kind of mantra that says that everyone has an obligation to live until “God” decides their time has come. I think that we have as little right to decide for someone else that they must live, as we have to decide for someone else that they must die. And this is exactly where euthanasia and assisted suicide become troubling: how can we be sure that people dying are not being coerced in any way into making that decision? Pro-euthanasia groups, in fact, sometimes advertise euthanasia as a way of giving family members the “gift” of no longer being a burden. Well, in all blunt honesty: euthanasia is about an individual’s *right* to die and it should stay that way. How much of a “burden” that person is, should not matter.

It gets more troubling when euthanasia on children is concerned, because children cannot make medical decisions independently. In the Netherlands, euthanasia on children under twelve has been legal since 2006 under the “Groningen protocol”. I will not doubt that parents know their children best – and certainly better than any kind of pro-life or disability rights organization or individual who has never met the child. I will also not doubt that the parents who have so far had their children euthanized under the Groningen protocol, loved these children deeply. But is love and “knowing best” enough to decide for someone else that they should die? After all, it is quite likely that the children were quite a burden on their parents, because all of them have serious disabilities or illnesses. Can we be sure that the parents really make a judgment about their child’s quality of life, rather than their own? And since we cannot be sure about this – in fact, quite likely, the parents’ own quality of life will play a significant role in their decision -, can you really say that a child under age twelve “has nothing to want”, as my father once said about severely disabled children?

But it gets more troubling. Who decides what is “quality of life”, anyway? Quality of life can be defined in two separate but related ways: someone’s subjective reporting when asked to judge their quality of life, which can depend on whatever the individual person considers determines this, and the more objective measurement of quality of life with (standardized) questionnaires, that measure whatever the creator of the quesitonnaire considers determines quality of life.

The people who “invented” the concept of quality of life, and who mostly decide what it is, are not individuals with disabilities or even their parents. They are healthcare professionals and scientists. Now I have nothing against healthcare professionals or scientists, except that the majority does not have significant disabilities or illnesses. I’m not even sure whether the creators of quality of life questionnaires, even asked the input of people with the disabilities and illnesses they were going to use the questionnaires on. Quite likely, the people who desinged the Expanded Disability Status Scale (EDSS) never asked people with multiple sclerosis which of their symptoms most disabled them. Not surprising that we now have a scale that relies heavily on the ability to walk, notwithstanding the fact that using a wheelchair usually provides a huge amount of freedom.

So what do professionals who decide what determines “quality of life”, base their decisions on, if not the input of people with disabilities and illnesses? My inclination is that many rely heavily on the things they themselves consider to give value to their lives. For example, in the debate over whether preemies below 25 weeks gestation should be resuscitated, both sides throw in IQ. The pro-resuscitation side says: “But some people will have an IQ far above 100 and will later go to university.” The anti-resuscitation side responds: “But there are also people who will have severe cognitive disabilities and will be institutionalized by their teens or early twenties.” Now of course outcome isn’t black-or-white and you can’t tell which individual preemie will fall off on which end of the outcome fence twenty years from now anyway, so I’ve never understood what sense this statistical calculation of life and death makes. But even if there were a way to determine a preemie’s future IQ with relatively high certainty, or when we’re talking about children who are older and whose IQ can already be measured, it still makes little sense to relate quality of life (and from there on, euthanazibility) directly to IQ. From the doctor’s point of view, it may, in the sense that he would not have had his job if he didn’t have his high IQ (presuming he considers his job enriching and contributing to his quality of life). But for an individual child, there are many other variables that influence a child’s quality of life. For example, the family’s attitude towards the child’s disabilities can make a huge difference. Same for the school’s attitude. Access to medical care makes a difference. So does the family’s support network (both professional and social). Individual factors will also contribute: I was annoyed when a pro-resuscitation doctor once brushed off behavior problems in children with normal IQs as “annoying”. As a side note on this, access to mental health services for the child and/or family, if needed, of course. These are all circumstances that vary considerably, and which are entirely unrelated to a child’s level of cognitive functioning. None of these are medical factors (no, access to healthcare is *not* a medical factor, it’s a social factor!). Very few of the outcome measures doctors use, can actually be linked directly to a medical factor. For example, high school graduation could be related to IQ, but a highly-intelligent person living in a poor neighborhood, is quite likely to be undereducated, while a child with a lower IQ may attain a higher academic level due to his parents being able to send him to the best private schools.

Now remember what is at stake here: the child’s life. Children who are said to have a poor “quality of life”, whatever that may be and however it may be determined, are euthanized, one might hope with parental consent. If the child is a premature infant, they’re simply left to die, without parental consent often. The reasons they are better off dead, are determined by doctors and other healthcare professionals who most likely don’t have any of the disabilities they consider so seriously incompatible with a meaningful life that they’ll approve the children’s euthanasia (or in many cases even participate in it). Many are also not parents of disabled children, so even if these can be said to advocate for their children even in such serious matters as the child’s “right” to die, doctors often don’t know what it’s like. If a parent doesn’t mind raising a child with severe disabilities, their preemie of 24 weeks will still not be resuscitated due to, well, what? The cost to society should this child end up with a severe cognitive disability and indeed be institutionalized, maybe? I think it’s ironic that healthy, non-disabled doctors judge the quality of life of people with disabilities they haven’t had either first-hand or second-hand experience with.

Proper Care Isn’t “Sitting on Patients”

People are locked up in isolation rooms, restrained, or otherwise severely restricted in their freedom of movement, on a daily basis. A study a few months ago found that, in the Netherlands, between 2004 and 2008, about 150 people have been secluded for a year or longer at a time. For comparison: our country has 16 million residents, and we have about 8,000 Mental Health Act treatment/long-stay orders and the same number of assessment orders each year. This doesn’t count the people locked up for a while only to be isolated again a short while later, or those locked up for months but not yet a year. One such case, which was widely covered in the media in 2008, involved Alex, a severely autistic man in his forties who had at the time the media was alerted, been isolated for over half a year. Alex had been living in a workhome (residential combined working-living placement for autistics) for twelve years, when changes to staffing and client population made him uncomfortable. He started displaying increasing irritability, screaming, damaging objects, etc. He was locked up in an isolation room at his Groningen area institution for several months. At first, he was “mobilized” (let out of the isolation room for short periods) every now and then to go on a walk with a staff member, but after a while, he was secluded 24/7. His staff didn’t want it this way, so they proposed he be transferred to an Amsterdam observation clinic, believing he’d get better care there. As soon as he arrived there, he was, however, put right into the isolation room, remaining there for another several months until his famly alerted the media. He was never formally observed until a Member of Parliament started asking questions, at which point he was let out of the isolation room and actually being observed. We weren’t informed what that observation was supposed to be for or whether it has lead to any constructive intervention plans, and if so, whether these plans have been followed through with, but it looked that his family was eventually relatively content (or of course they were shut up by the clinic).

This story emerged amidst a number of horrifying isolation room stories that made it into the media in the fall of 2008, among them two people dying at another Amsterdam clinic. Some politicians called for the abolishment of isolation rooms. At that point, a well-known psychiatrist spoke up in the media: isolation rooms would still be necessary even if large amounts of funding were pumped into extra staffing, cause “you can’t sit on people to prevent them from self-harming, can you?” Well, I have neither been isolated (time-out rooms are different from isolation rooms), nor been restrained, but indeed, I would say isolation seems better (moreover because restraint is here almost always combined with isolation or time-out). But this reasoning would only be useful if all patients currently locked up in isolation rooms, could actually only be prevented from self-harming by being “sat on” (ie. restraint). This is entirely incorrect, not only because actual attempted serious self-harm or aggression is not the only reason, or even the most frequently used reason, for isolation, but also because people are usually isolated for a far longer time than they are actually threatening.

What does it mean when a psychiatrist says that there is no alternative to isolation? Quite likely, it means that there is no alternative, within the limits of the current situation on the ward that psychiatrist works at or the wards he knows of, that is as cheap, convenient to the staff, and will “fix” the problem behavior as quickly as isolation supposedly would (except for maybe restraint). I don’t know what type of ward that psychiatrist works at, if any (he was speaking on behalf of a professional association), but I have already stated many times that the care provided at the majority of wards, does not allow for such a black-and-white reasoning at all. Indeed, if there’s a ward with 24 people with developmental disabilities and severe self-injurious/aggressive behavior (and I know of such a ward, its director voluntarily participated in a TV documentary), and there are only three or four staff members on each shift, it is impossible to “sit on” a threatening patient, but the reason has nothing to do with ethics. I don’t know what the staff/patient ratio at Alex’s Amsterdam observation ward (or his workhome for that matter) was, but if it’s anywhere like this or even if it’s a little better, it is unlikely that he will be able to be observed at all. But if this is the case, it isn’t anything about Alex that made him “unobservable”.

Besides this quantitative lack of care on most wards, how qualified is the care, really? For example, is anyone on that observation ward Alex was sent to, trained in functional behavioral assessments? I doubt it, since this is not something psychiatric nurses get trained in, and a psychologist can’t go over to the ward to observe the patients on a regular basis. (When a psychologist once mentioned this during a treatment plan meeting of mine, I was probably the only person in the room who knew what he was talking about.) Maybe there are more staff trained in this method on developmental disabilities wards (Alex lived in a psychiatric institution), but I’m not sure. It is easy to blame the patients for their “random” aggression or self-injury (hint: if aggression/self-injury is truly random, have medical causes been ruled out?), but if you were only able to collect random data due to being too busy on an understaffed ward with all the bureaucratic requirements set forth to increase paper tiger “quality”, or due to your lack of training in standardized obsevation methods like FBAs, how would you expect to find anything useful?

And if, by magic, a patient’s behavioral assessment did meet the standards, is the plan developed on the basis of that assessment, going to be followed through? Most likely not, because staff shortage, unqualified staffing, an environment that cannot be controlled to meet the individual’s needs, etc., will again mean the patient doesn’t receive proper support. It doesn’t matter that appropriate support would prevent or significantly reduce acting-out behavior, since the patient has to be molded into the sytem somehow.

I know, again, that this is the way it is now. I know we can’t change it overnight. But I also know that if we accept the reality as it is now, we will be stuck forever with people with severe disabilities (not just autism, but other developmental and psychiatric disabilities) in isolation rooms for over a year. It isn’t like more and better qualified staff could only be used to sit on patients – if that were the case, we could pull out a can of managers and bureaucrats to do that job instead of writing thousands of quality paper tigers. What quality are they writing about anyway? Not quality of care if you ask me.

Is Institutionalization Necessary?

Stephanie Lynn Keil commented on my previous post at her own blog. The issue she raises is the one I failed to address properly in that post: whether you’d actually rather starve or be institutionalized. Stephanie writes that she’d rather starve. It is not something that surprises me. In fact, I’d not be surprised if some of the autistics who may starve from lack of services, agree (I never asked, so I don’t know). But should these really be the options?

Stephanie correctly points out that the U.S. healthcare system isn’t the same as the Dutch system, because ours is socialized. This means that healthcare is available to everyone here regardless of income, while in the U.S., many people are uninsured and therefore don’t get even the most basic healthcare services. Even if U.S. residents are insured, it is quite possible that mental health services will not be covered, or not to the same extent as somatic services. (What happened to the Mental Health Parity Act? Did it actually pass?) Waiting lists, at least for outpatient assessment and treatment, are much longer there than they are here. I don’t know about the waiting lists for inpatient treatmenr or long-term residential care in the U.S., so I can’t compare those to our waiting lists. When people are a danger to themselves or others, it is quite likely that they will be warehoused in state institutions, which I’ll eagerly believe provide poor care. Since I’ve never been to one, I can’t make a comparison to our institutions again, but it would be not at all surprising to me if it’s worse there than here. In short, I can imagine that someone would rather starve than have to live there.

However, this state of being caught between a rock and a hard place, only exists on the presumption that institutionalization is necessary and that the quality (or lack thereof) of care delivered, is a given. Stephanie opposes institutionalization. So do I, and so does every autistic I know who could starve from lack of services (FYI: all live in countries other than the Netherlands, so I don’t know their healthcare systems). This is not a matter of I thinking I, or anyone else, is too good for an institution, or somehow has whatever capacities it takes to be “allowed” in the community if the community would just see how oh so capable we are. I, for one, am not capable enough to live in the community (at least, not now) within the limits of the way my country’s system works. But that doesn’t mean the system is right.

It isn’t like, if you need 24-hour supervision for medical reasons, you should have to choose between dying of your medical condition or being warehoused in a large institution where you could die anyway, because you’re not getting nearly the amount of care you need. It isn’t like, if you’re starving because you can’t prepare a meal, remember to eat or even feel when you’re hungry, your choice should be between starvation and being trapped in a state institution, where you could die from abuse or neglect. It is a false dilemma. Oh well, that is, it should be. So why can’t we all get together and fight for disabled people’s – all disabled people, including those with the most severe disabilities – right to individualized care?

People May Starve

There’s a comment on this post, which raises an unrelated but valid concern – why is ASAN not campaigning actively against the bullying of autistics (or why do autism advocates not see it?)? -, that upset me to a significant degree. This is not meant as an attack on Stephanie Lynn Keril, who posted the comment, since the incorrect and potentially harmful belief stated here is pretty prevalent among autism advocates and, I think, also among certain subgroups of the neurodiversity moveement. Referring to autistics who (presumably!) can drive, work, have friends, and live in their own apartments but who forget to eat if they don’t have someone to remind them, she asks:

Which would you rather have: a job, a car, an apartment, friends and sometimes forget to eat and live in a messy apartment or live in an institution, self-mutilate, have trouble communicating but have shelter and food?

I will not go into the incorrect assumption that everyone who has a job, car, friends and apartment cannot possibly have trouble communicating or self-mutilate here. Suffice it to say that, just because Stephanie doesn’t know anyone who has all these and still self-mutilates and has problems with communication, or she dismisses the people she knows via the Internet who are like that, doesn’t mean these people don’t exist. But even if this assumption were correct, I still wouldn’t be able to go along with Stephanie’s obvious suggestion that going without food is better than being institutionalized. You know, starvation kills.

It isn’t like there is any reason to trivialize autistics’ problems remembering to eat. Going without food for a few days may not be a big problem, but going without food for a month or longer, certainly is. With fluid, you may die if you go a week without it (or sooner if you have pre-existing medical conditions). I know autistics who have almost starved, and at least one autistic who acquired severe kidney damage from forgetting to drink enough fluids. I don’t personally know autistics who have actually died of starvation or dehydration, but that is more likely due to the fact that I don’t know every autistic, than that they don’t exist. Does sereious damage or death only matter if it comes from self-harm?

And here is what angers me most: it is the incorrect assumption that an autistic who has a job (and you don’t know what accommodations that person gets for their communicative disabilities, cause you assume they can’t possibly have them) or lives in their own apartment, cannot possibly have trouble with nutrition or self-care, that allows these people to remain without services, sometimes even if they’re starving. It is the incorrect assumption that someone cannot forget to eat for more than a few days, that causes people to think it mustn’t really be this bad. How many so-called “high-functioning” autistics must die or acquire serious, permanent damage to their bodies before people stop assuming our cars, jobs or apartments (presuming we have them) mean we don’t have problems and therefore don’t need help?

College Experiences for Students with Mental Illness

Abby Jean writes on FWD/Forward about her experiences in college as a person with mental illness. In particular, she describes how class privilege made it possible for her to stay in college despite attempts from ableist university employees to get her out. Class discrimination is quite prevalent in the U.S. system as a whole. For example, Abby Jean could not have accessed quality mental health services if her parents hadn’t had the money to pay for a private psychiatrist and therapist. On the contrary, in the Netherlands, mental healthcare is covered in the basic health insurance package every resident is required to have. We do have university counseling departments here, too, but if you have serious mental health issues or need a formal diagnosis, I recommend that you get a referral to a mental health agency through your family doctor instead of going there. University counselors can’t make official diagnoses, don’t have time for or expertise in psychotherapy (other than some preventive therapies), and they most certainly cannot prescribe drugs (hint: Abby Jean’s counselor should be really glad she hadn’t graduated yet or she’d have lost her license!).

When Abby Jean was hospitalized, the university wanted to kick her off campus after her discharge. In my situation, the university may’ve not wanted to get me back there (I am not sure, since I didn’t want to go back myself), but they weren’t responsible for my housing. The student counselor has some influence there, in that she asked the housing association to allow me to stay in my home for the remainder of the year (2008, I don’t know why I haven’t been kicked out yet). Now I may’ve been in a different situation had I not had my own apartment. In a dorm, after all, fellow students would’ve been upset by my behavior far earlier than they did now. On the other hand, like Abby Jean says: what about the people who binge drink and then pass out on the stairs?

Abby Jean’s point that non-academic accommodations are not widespread in the university system, is interesting. In fact, in the Netherlands, if you disrupt a few university classes or even if you are acting up outside of class, even if it’s due to a documented disability, you will pretty likely be kicked out. I almost had to quit a week into university because of a few meltdowns on college grounds, outside of class, because “a university is not a therapy center”, as the student counselor said. And it wasn’t that I requested any accommodations or really asked for any help in cases of meltdown, but that other students who saw me melting down (or even if they saw me just being lost) would request someone from the student services or my volunteer student buddy from the autism program to intervene. There seems to be an unwritten rule that, as a person with disabilities, you are responsible for other people’s reactions to you.

I am not sure about the details of Dutch disability discrimination legislation. I know that it applies to colleges and universities, but I’d not be surprised if it is okay to discriminate on grounds not obviously related to curriculum access – and besides, the university can pretty easily refuse to make instructional materials accessible with the argument that “every other blind student we know has a relative do this for them”.

What We Say Isn’t Always What We Mean

I am not talking here about the non-literal communication of NTs and autistics’ presumed difficulty interpreting it. Rather, I refer to an expressive difference that can be part of autism, or at least, which I’ve read other autistics experience, too. In the psychiatric handbooks, it might be that this falls under “stereotypical” or “repetitive” language, but it isn’t necessarily either of these, and I am not claiming diagnostic validity here.

Amanda Baggs had a post on her blog a few years ago in which she quoted some pretty disorganized language, and was asking whether this sounds like the person uttering these words is suffering from disorganized thinking. Her point was that language is different from thought. Not only this, but language can be different from intentional communication. Sometimes, the person using language might intend to communicate, but the words that come out of their mouths are not the words they wanted to say. It is also possible that the words that come out of someone’s mouth, have no intentional meaning whatsoever. This is quite obvious when people’s words make little sense, for example, if they’re nonsense words. The people around you might ask you what the words mean once, but will quickly realize that you just didn’t learn that there’s an option to remain silent when you have nothing to say. (Of course, this may not always be the correct attribution – think of, for example, people with Tourette’s -, but the attribution will keep people from assuming meaning that wasn’t there.) When the words uttered have linguistic meaning, it is also possible to discern they aren’t supposed to convey anything, if they’re used in a meaningless form. For example, if I summed up a string of venomous animals, people might wonder if I was ever going to say anything about these animals rather than just summing them up, but that isn’t necessary. (When I had this habit a while ago, people were already used to the fact that “Brazilian wandering spider” is a favorite word of mine, so they never showed any surprise.)

It becomes more difficult when the words that come out of someone’s mouth, sound like they’re making up a communicative phrase. For example, when I am overloaded, I might say things like “Go away, stay there” a few times. Sometimes, I am not sure why I’m saying these things, but people assume they are intentional anyway. Not only that, but they’ll quickly assume that I am directing these words at them. Now of course it is quite possible that I am intentionally telling someone to go away and stay where they were, although it sounds a bit paradoxical to me. But besides just being a meaningless string of oral nonsense, it can also be that I direct these words at an external or internal stimulus. It doesn’t have to be a human: I have told lawn mowers to “go away, stay there”. Oh well, maybe I could be said to direct these words to the person operating the lawn mower, but that’s not the source of the overloading noise and I assume he wears earmuffs anyway.

Now even in these situations, you might say that you can tell that I’m not intending what I say, because it is repetitive (usually, in my case) or because it sounds odd in some way. However, it is quite possible that people use phrases that make perfect sense and are not (immediately) repetitive, but that are still not intended, or not directed at the people listening. I think I can usually tell when someone with a psychotic disorder is talking to their voices rather than me, but I still incorrectly presume comments to be directed at me sometimes (and I hope not, but I might think of comments that are actually directed at me as directed at a voice). Oh, for clarity’s sake, I am not saying here that auitistics are psychotic (they might be thought of that way by doctors who assume every word corresponds to a thought); I am just using it as an example of how speech that makes perfect sense could still not be intentionally directed at the listener.

Now in my own case, I use speech communicatively most of the time. Therefore, it is understandable that people assume that I’m meaning what I say. They are correct far more often that way than if they presumed the words coming from my mouth to be strings of oral nonsense anyway. But some people use speech communicatively only occasionally, or have speech, but don’t use it communicatively. People still may presume intentionality in the words coming out of these people’s mouths, even if their lack of intentional speech communication is the reason they use an AAC device. Isn’t it interesting how speech is so ingrained in people’s minds that we automatically assume it to have an obvious intention and meaning, that it really doesn’t always have?

Autism Reality Check: There Is No Cure

I have been debating autism with Harold L. Doherty, author of Facing Autism in New Brunswick on Twitter, where he goes by @AutismRealityNB. Of course, the controversy involved a post about severe autism and its implications for cure. In this case, a video was posted about an autistic with severe self-injurious behavior.

Now I have never said that severe autism isn’t real. I for one am not offended by a video that shows seriously harmful behavior displayed by an autistic, beyond the fact that I consider it a privacy violation to have your harmful behavior broadcasted on the Internet (presumably without consent). I know that autism can and does cause serious self-injury and aggression. I have never said that this is just a comorbid disorder or something. I don’t like these divisive tactics and protest when neurodiversity activists use them as much as I do when curebies do. I know that there are a huge number of autistics in institutions today (yes, I know I don’t count). Many more live on the streets. I know that many autistics don’t have access to a formal communication system. I know that there are many autistics who self-injure or use aggression on a daily basis. I am not in denial of these autism realities. They may in fact be far more widespread than Doherty wants us to believe, because he is one of the people denying the reality that people labeled “high-functioning” or “Asperger’s” may have serious problems in daily life. In fact, when I pointed out that some people with Asperger’s deal with self-injury, too, he asked me why they wouldn’t just jump on the curebie bandwagon with him then? In other words, if you acknowledge that you have a significant problem, why don’t you embark with me on a costly and time-consuming journey to find a cure, maybe, someday, for the entire, complex condition that might be causing you a significant problem, but that has also shaped who you are for all of your life? Maybe the answer is that I’d rather get help dealing with my problem now.

Let’s face it, after all: there is no cure. It is unlikely that one will be found within the next few decades. If a cure is someday found, the children whose parents advocated for it, will be grown up or dead. Do the parents who present cure as a viable option, really want to see their children, or other people’s children, self-injuring for the next so many decades while they’re awaiting a cure? What about the many autistics who will not be helped by a cure even if one is found? Should they just be rotting in institutions, really?

All the while, millions of dollars are pumped into medical research projects. It isn’t like this research will have any tangible results anytime soon. $4.5 Million of the U.S. stimulus bill is invested in a study that would sequence the genomes of 85 autistic people. Most likely, multiple genes will be found to be involved, and it is unlikely that everyone will display with the same genetic profile. Therefore, larger research studies will have to be set up to sequence the genomes of more autistics, who might conform to one of the subtypes hypothetized from the stimulus bill study. How many more millions of dollars is that going to cost? And what with environmental factors? Doherty is constantly calling for more research into that, and I’m not principly opposed to the idea that autism could be environmentally caused. What if all the possible environmental causes need to be researched on a large enough scale to satisfy just the scientific community? (Note, here, that even if something is found to have no scientific merit whatsoever, that doesn’t mean parents will be satisfied. Think vaccines here.) And please note that a known cause isn’t the same as a cure. The cause of Rett Synrome (a mutation to the MECP2 gene) has been known for ten years, but there is no cure. Much more research has to be undertaken before a cure for even a hypothetical autism subtype with the easiest possible causative factor (eg. a mutation to a single gene) could be developed, because even a “simple” defect may be hard to correct. It is a hell of a lot harder to develop cures for hypothetical autism subtypes with more complex genetic and/or environmental contributors. How many billions of dollars do you think all of this costs?

Now let’s face another autism reality: autistics are in need of help now. Maybe curebie parents, who think it’s okay to spend every dollar Congress has to spend on autism, on causation research, are fine with their children remaining in their current state (presuming they won’t develop, of course, but that seems to be at the root of their dismissing every autistic adult), for as long as it takes researchers to find a cure. Well, I do not accept this autism reality. When I see an autistic with no communication method, I wish for technologcial advances, that may provide children like him with a new way of communicating long before they can be cured. When I hear of autistics locked up in isolation rooms because of severe aggression, I wish more money went into long-term care, so that they can be provided with the support they need. When I think of the autistics living on the streets, I think they need housing witt appropriate community supports.

Doherty tweeted concluding that, if I got my way, severely autistic children would be denied cure in favor of Asperger’s people’s right to support services. While in essence that’s indeed what my tweets came down to, except that I emphatically wasn’t saying severely autistic people shouldn’t get support, it isn’t like there is any reason to play the underdog here. Causation and cure research gets millions of dollars, and it is likely to remain that way no matter what I, or even Ari Ne’eman or some other person well-known in the world of autistic advocacy, says. It just won’t happen that Doherty et al. should be worried that their desired cure research will be endangered by the need for support funds. The simple reason behind this is that Congress has a long-term financial interest that has nothing to do with today’s autistics: once a cure is found, it will be much more cost-effective than lifelong support. This isn’t a matter of ethics, but a simple matter of money.

But do today’s autism parents really have a choice? I mean, if you’re a medical research funding provider and are not personally related to any autistic, you can look at the numbers and realize that $4.5 million may be just enough to provide the 85 autistics whose genes will be sequenced with a year of residential care. From there, it isn’t an illogical step to assume that it’s much more useful to sequence their genomes, because that might ultimately help many more autistics (or, at least, the country’s monetary reserve) through a cost-effective cure. But if you are a medical research funding bureaucrat, you won’t have to deal with these autistics on a daily basis. Autistic people do have to live with autism on a daily basis, and their parents have to live with autistic children on a daily basis. No prospect of a cure, maybe, someday, when, in the most optimistic scenario, today’s children are grown up and today’s adults are dead, will change that. It may sound egoistic of me to look at today’s generation only and not at the cost possibly saved to future generations with a cure. Of course my reasons against a cure go beyond money, but that’s not the point here. However, I have no choice. It isn’t like all the autistics currently in isolation rooms or cardboard boxes and all the autistics whose only communication method is to bang their heads into brain injury, can just be waiting patiently for the rest of their lives, for the mere good of a cure that might just never emerge and isn’t going to help them any at least. Call me egoistic if you like (although I’m not referring to myself at all in this statement), but then tell me how the videos of severely autistic children you show, can get you thinking about a hypothetical cure they will most likely not benefit from, rather than their current needs. The autistics in the videos aren’t poster puppets after all, they are REAL.

Implications of Clinical and Anatomical Heterogeneity in Autism

Someone I follow on Twitter posted a study* that examined the brain anatomy of people with autistic disorder, Asperger’s Syndrome and neurotypical controls. Unfortunately, the journal in which this study was published, is not open access, so I was only able to read the abstract. The most interesting finding was that people diagnosed with autistic disorder had increased grey matter in the temporal and frontal lobes, which was not present in people with Asperger’s Syndrome. I asked the doctor who tweeted the study whether this was likely to relate only to differences in language, or to other skills as well. He replied that the brain abnormalities implicate differences in other functions as well, but he didn’t say which. Possibly this isn’t fully known or it wasn’t considered in this study, or he thought it was so obvious it didn’t warrant an explanation (within the limits of 140 characters). Maybe in that case I should be reading my neuropsychology textbook (which I will be taking a test on in a few weeks) more closely: I do know that both the frontal and temporal lobes are involved with many functions (including language), but they are both so complex that I wouldn’t know what a general finding about grey matter volume somewhere unspecified within these lobes says about cognitive functioning.

In any case, is this neuroanatomical finding an indication that autism and Asperger’s, which may be merged into autism spectrum disorder in DSM-V, are distinct after all? Not necessarily, if we’re taking the current DSM-IV criteria: these essentially only distinguish on the basis of early language development, while the neuroanatomical differences that were found, apparently indicate other functions are involved as well. Of course, the DSM-IV criteria mention other possible differences, for example in adaptive behavior, self-help skills and IQ. These are not mandatory, but if there were grounds to assume that these constituted medically distinghuisable autism subtypes, there is all the reason to actually create different diaagnostic subcategories for them: for example, one group of autistics who have, say, a language delay, low IQ and poor adaptive behavior, and another group (we might call them Asperger’s) who have none of these. If there were a neuroanatomical basis to distinguish these two groups, it would be all the better, since neuroimaging is much more objective than any psychological test. Note, however, that current diagnostic criteria do not make such a rigid distinction, and so far there is not enough evidence to support one, since too many people would be falling somewhere inbetween if the gap were too wide, but the differential diagnosis would make little sense (as in the current situation) if the distinction were too vague.

So what if neuoimaging, neuropsychology and/or psychiatry were eventually able to actually establish objectively different autism subtypes, according to which people could be classified on a mutually exclusive basis? Would they still all fall under the umbrella of autism, or would the spectrum shatter into what may be a dozen different disorders? I think that maybe it will be a little of both, with the disorders with a more homogenous presentation and known biomarkers, being broken off the spectrum (Rett Syndrome is already a current example of this) and the others remaining within the vague realm of the autism spectrum. Another possibility is of course that they’d all still be called “autism” when referring to the clinical feature, but people would distinguish different syndromes, such as what already happens with mental retardation syndromes.

Of course, this differentiation between neuroanatomical or genetic and behavioral subtypes of autism, will also have implications for treatment, prevention and cure, assuming that researchers aren’t going to listen to anti-cure advocates anytime soon. For example, imagine that there were autism subtypes for which a prenatal test existed so that people could abort an affected unborn child, others that could not be diagnosed prenatally but could be cured with some kind of drug, still others for which no cure existed but which responded favorably to a certain treatment, and yet others for which supportive interventions were still the only possibility. This would divide the autism/autistic community not just along ideological lines, but along medically objective lines. This would not mean, of course, that some types of autism are not autism after all. To use an analogy: some types of blindness may in the near future be cured through gene therapy, and for some others, a bionic eye might work. However, for my condition, no cure exists and one is very unlikely to emerge. Note, here, that the distinction is not based on the severity of our visual impairments, but on the genetic or anatomical cause of our eye condition. Likewise, it might well turn out that certain types of “severe” autism respond to a cure, but others do not, so that it isn’t like we can just invest all our money in finding a cure (which will probably turn out way more difficult than what certain lobby groups want us to believe) even if we only focused on “severe” autism, since supportive services will still be needed for some “severe” autistics. It is also quite likely that among those with curable types of autism, there will be “mild” cases, who are now kicked off the autism advocacy bandwagon for being too “high-functioning”. The only reason Asperger’s and autism are being distinguished for research purposes, after all, is that they have made it into diagnostically different categories within DSM-IV. DSM-V is likely to take care of that, so that researchers trying to establish neuroanatomically or genetically different autism subtypes, will have to distinguish their subgroups on the basis of clearly defined clinical charactertics, or have to acknowledge that one clinical presentation can have a neurologically or genetically heterogenous profile (and vice versa, of course).

* Toal F, Daly EM, Page L, Deeley Q, Hallahan B, Bloemen O, Cutter WJ, Brammer MJ, Curran S, Robertson D, Murphy C, Murphy KC, Murphy DG (2009). Clinical and anatomical heterogeneity in autistic spectrum disorder: a structural MRI study. Psychol Med, 2009 Nov 6:1-11. [Epub ahead of print]