There’s a relatively new movement in the communities of people who deal regularly with autism and related conditions that’s assigned themselves the term “neurodiversity” as a shorthand reference to their commitment to affirming atypical neurological conditions as equally legitimate. This movement shuns the terms ‘normal’ and ‘abnormal’ and instead prefers to speak of those who are neurotypical and those who are not. The neurodiversity movement seeks to identify various traits common with autism as neither better nor worse but simply different.
This movement should be praised for its recognition that respecting people with autism requires taking into account how differently they take in information, process it, use it, and produce various responses. They rightly emphasize that an atypical neurological state need not be thought of as a disease that needs a medical cure or treatment or a disability that requires taking the person to be deficient. They recommend supporting a person for who they are rather than trying to “fix” them to conform to the standards everyone else has. Some autism advocates on the autistic spectrum insist that they wouldn’t want to be made “normal” if a “cure” were ever found. They like being the way they are.
There’s something obviously right about most of that. The more I read stuff from this movement, however, the more disturbed I get that there’s something they’re just not seeing, and the good in what I just wrote is blinding a lot of well-meaning people to a serious philosophical error lying behind much of what the neurodiversity movement produces. Consider this story by Karen Kaplan of the Los Angeles Times. She is right to point out that, just because autistic people do badly on certain standardized tests, it doesn’t mean they’re cognitively deficient. It may well be that the reason a certain person scores low on a certain test is because the test is relying on typical patterns of language use, and someone with autism may be using a different pattern of language use. The underlying cognitive ability being tested for may be stronger than the test shows. That’s all correct. But in her rush to make this point, Kaplan completely ignores the fact that the reason someone is scoring low on the test is because of a genuine deficiency in the kind of language use that most people are much better able to engage in. That means there is a lack of ability that comes with autism, even if its manifestation will be different from person to person.
Again, Kaplan speaks of those who emphasize “training kids with autism to behave like typical kids instead of allowing them to make the most of their differently wired brains.” That’s especially helpful, because allowing autistic people to make the most of their differently-operating brain is certainly the right goal. But that’s perfectly compatible with taking their differently-wired brain to be operating at a deficient level with respect to certain cognitive skills, even if it’s also operating at a higher level with regard to other cognitive skills. Some in the neurodiversity movement are willing to recognize that differences between neurotypicals and autistic people involve autism conveying certain strengths and weaknesses. But the language of “not better or worse but just different” disallows any such recognition and smacks of crude relativism, whereby we cannot recognize any difference as being better or worse. When taken to its logical implication, we’d have to say that someone who is not intelligent enough to read is not less smart in any respect than the norm, just different. I submit that such a statement is nonsense. There’s a particular cognitive ability that allows for reading that most people have, and someone who doesn’t have that ability (assuming they genuinely don’t) is lacking a cognitive skill. Why can’t we just accept that?
Similarly, there is a seeming refusal to recognize any medical condition that can be spoken of in terms of being made worse off. In some respects this strikes me as a general problem among disability communities that stems from crudely relativistic thinking. The deaf community is largely unsupportive of cochlear implants, because it gives children the ability to hear, and they take their lack of hearing not to be a genuine disability. There’s nothing wrong with not hearing, so why should they support giving deaf children the ability to hear the way most people can?
If we really took this line of reasoning seriously, we’d have to apply it to other conditions that virtually no one wants to see as perfectly normal. For example, one could argue that pedophilia is just a different way of being, and we should respect it. After all, it’s caused by a brain condition, and all brain conditions are equally good. In terms of the arguments I see from the neurodiversity movement, I see no way to say the things they say while avoiding such a conclusion. There are plenty of ways to distinguish between the two cases, but I don’t see how those are available given the extreme sorts of statements that I regularly see among neurodiversity advocates.
People who have serious cognitive deficiencies often have serious problems seeing their own intrinsic worth. It’s important to affirm that. It’s important to help them see that their very existence is not wrong in the sense that we should blame them for being the way they are. It’s important to help them see that their preferences may seem weird to others but that in many cases perfectly all right for them to have them. But some voices advocating for neurodiversity want us to say that someone with autism is not messed up in any sense. The fact is that we’re all messed up. We’re all distorted. We’re all flawed. No one is the way we ought to be. Autism is one way to have various deficiencies, one that also happens in many cases to have plenty of strengths above the level typical of most people. To say that we can never evaluate being less good at something or more good at something with such value-laden language would be to overreact to a genuine problem in how many people look at people with disabilities.
But on one level, I can’t blame the neurodiversity movement (and the more general relativistic outlook among other disability communities). After all, their view follows fairly easily from a particular version of secularized naturalistic thinking. Different neurological conditions stem from natural variation, and there’s no other level of explanation but natural variation. There’s no God who designed human beings to have certain capabilities. There are no natural purposes according to which organisms have a nature, and certain capacities are part of what a well-functioning member of their species will be able to do. There’s no notion of well-functioning if your worldview doesn’t allow for higher-level explanations about purposes and design, other than perhaps simply asking whether a particular organism fits into the way most members of its species are or whether it fits the patterns members of its species typically desire for themselves. There’s nothing objective about what a healthy member of that species or a well-functioning member of that species would be like. There is no way we can have a notion of the way we ought to be if there’s no ground for what it would be to be the way we ought to be. But such a conclusion seems to me to be so obviously false that perhaps we should just question the metaphysical underpinning of the neurodiversity movement, rather than giving in to that metaphysical picture’s logical implications.
[cross-posted at Parableman and the Neurodiversity Consulting blog]
February 10th, 2012 | 9:03 am | #1
People who have serious cognitive deficiencies often have serious problems seeing their own intrinsic worth. It’s important to affirm that.
If people with autism have problems seeing their own intrinsic worth, it’s because they are bombarded with messages about how flawed, unwanted, and unlikeable they are, every single day.
Remember the “billboard” scandal? Imagine if any other birth defect were lumped in with illnesses in such a way. Imagine if the victims of dwarfism were forced to endure billboards that said “We are dwarfism, and we are holding your son hostage. He will never be (insert really insulting thing), and he will never (insert another really insulting thing), unless you buy Product Or Service X”.
We would all be outraged. And we would be right.
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It’s important to help them see that their very existence is not wrong in the sense that we should blame them for being the way they are.
But their existence is “wrong” in some other sense, you think.
In what sense is their “existence” wrong?
Autism is not a disease. It is not an external force, like cancer. It is part of their very deepest level, like Down’s syndrome. There is no way to say that autism should not exist, without also saying that autistic people should not exist, we should all meet a cognitive ideal.
But what exactly is it about autism that should not exist? How can you separate that from the person themselves?
When you’ve figured that out, you will have no problem getting autistic people to admit they are “messed up” – because if you say something like, “headbanging is a real problem” and “headbanging shouldn’t exist”, they will agree with you, probably with great enthusiasm. It’s only when you fail to separate the person from the problem that the two viewpoints are irrevocably in opposition.
You are using language that suggests that the mere existence of autistic people as a class are a social problem – and I think autistic people are right to refuse to go along with that.
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It’s important to help them see that their preferences may seem weird to others but that in many cases perfectly all right for them to have them.
Autistic people know that. It’s everyone else who doesn’t.
Autistic people are routinely punished for being autistic – at a systemic level. Autistic traits are routinely treated not as symptoms that exist for a reason, but as spoiled-brat behaviors to be punished and controlled with brute force.
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But some voices advocating for neurodiversity want us to say that someone with autism is not messed up in any sense. The fact is that we’re all messed up. We’re all distorted. We’re all flawed.
When was the last time you (or more accurately “people like you”) were expected to confess publicly how messed up you are, and in what ways you are messed up?
Their existence is not wrong at all.
They are what they are. They exist. This is not a bad thing.
The only other option is the Down’s syndrome treatment – abort them as soon as they are identified.
There is no “cure” for autism, because it is not a disease, it is just the way some people are created.
February 13th, 2012 | 11:52 am | #2
My whole point is that it’s neither a disease in the sense of something purely bad nor just a way of being different that has no value-judgment whatsoever.
But their existence is “wrong” in some other sense, you think.
No, but I would want to say that something has gone wrong in the process of their becoming the way they are, as is true of all of us. This is just one particular way that people can develop differently, as the neurodiversity movement insists, but it’s a way that involves good and bad, and the bad wouldn’t be present without the fall.
Autistic people know that. It’s everyone else who doesn’t.
Some might. Some don’t, in my experience. But even the ones that do would benefit greatly from someone else helping them to see that others are aware of it as well.
Autistic people are routinely punished for being autistic – at a systemic level. Autistic traits are routinely treated not as symptoms that exist for a reason, but as spoiled-brat behaviors to be punished and controlled with brute force.
I deal with that on an almost-daily basis. But just because people respond inappropriately to behavior that stems from autism doesn’t mean it’s any better to act as if the underlying cause of that behavior is merely an alternative way of being with no good or bad to it, and that’s what some of the neurodiversity language implies (and what prominent people in the movement even explicitly say).
Sure, we need to resist people’s attempts to label behavior that resembles morally bad behavior as morally bad when we’re dealing with autism. I will not apologize to anyone for what my son does in public if it arises because of his autism. That would cater to the idea that he’s doing something morally wrong when it’s usually not even the right category to be discussing it. But it doesn’t follow that the condition that leads him to kick people in the shins when he greets them or to try really hard to escape from our house to go into neighbors’ back doors to look out their windows is a value-neutral or even perfectly good way of being.
Part of the Christian message is saying that the world shouldn’t be the way it is, and conditions that make communication, cognitive processing, and sensory integration so difficult are part of that, and I think we sacrifice some of the gospel’s implications if we insist that the things that will be restored to the way they ought to be in the new creation do not include any adjustments to the functionality of autistic people’s cognitive, sensory, and communication deficits.
You are using language that suggests that the mere existence of autistic people as a class are a social problem – and I think autistic people are right to refuse to go along with that.
No, a social problem would mean one set of social expectations conflicts with another, and we’d have to favor one over the other, which I refuse to do in this case. I’m not identifying a problem that I would frame as a social problem, even though differing social expectations for autistic people do present conflicts.
What I’m saying is that there’s something involved with autism that harms autistic people in terms of what’s good for human beings according to our very nature. This is precisely not a social problem that I’m identifying, even if there are social conflicts that arise because of it. The problem I’m pointing out is that autism causes underdevelopment in certain cognitive capabilities, often on a level that constitutes a serious harm to the person in question. I think we ought to recognize that rather than being relativists about what God’s intention for human beings might have been.
Your false dilemma at the end is pretty low. There’s no reason to think you have to consider a condition perfectly good in every respect or else kill everyone who has that diagnosis. We don’t have to think we should kill blind people just because we think they’d be better off if they could see. We don’t have to think we should kill gay people if we think they’d be better of being heterosexual. There are plenty of moral positions in between seeking to eradicate someone and thinking there’s no sense in which their being that way is bad. Those two examples are both in different spots on that continuum from each other and from autism.
February 14th, 2012 | 3:12 pm | #3
I deal with that on an almost-daily basis. But just because people respond inappropriately to behavior that stems from autism doesn’t mean it’s any better to act as if the underlying cause of that behavior is merely an alternative way of being with no good or bad to it, and that’s what some of the neurodiversity language implies (and what prominent people in the movement even explicitly say).
It’s not individual people responding inappropriately. It’s the entire set of assumptions upon which autistic people are treated.
This is not a false assumption. It’s a question of choosing one of two narratives about autistic people.
Medical practitioners who accept the assumptions I find problematic are led to focus on the behavior instead of what causes the behavior. The person, not the specific presenting situation, is defined as the problem.
Then the person’s behavior gets worse (since the problematic behavior is in fact a response to distress, and the people “helping” this person are increasing his distress level), and this is videotaped and used as proof that autistic people are monstrous and out of control and need to be subdued using extreme measures worthy of the Spanish Inquisition.
This mistake happens because autistic people are not treated with dignity and are not accorded respect. The cure is simple: autistic people need to have their feelings, needs, and opinions honored, to the extent that we are capable of determining them.
The problem: this runs counter to the existing narratives – where the real victim of autism are the unfortunate parents and caregivers.
Medical professionals talk directly to caregivers, and dismiss autistic people even when autistic people are capable of having an opinion.
This leads to situations where the medical professionals and the caregivers agree that the “problem” with an autistic person is his behavior, when the autistic person views the behavior as a response to the problem. The medical professionals and the caregivers do not care and are indifferent to the needs and feelings of the autistic person, who is viewed as having no right to an opinion about his own well-being.
The medical professional and the caregiver decide that what is necessary is drugs or restraints or other “behavioral modifications” that restrain the autistic person, while doing nothing – or worse, increasing – whatever it is that is causing the autistic person’s behavior.
The difference is whether a behavior is recognized as a symptom, or viewed as the problem rather than as a response to the problem. Or, to put it another way, whether the treatment involves listening or “breaking” the person.
The caregiver views the person’s behavior as “inappropriate”, and drugs it (or ties the person to a table, or whatever). But the autistic person perceives the behavior as an inevitable and appropriate reaction to the real problem – the problem that is ignored by the people who claim to be “helping” him.
When we’re talking about someone who is totally nonverbal & out of control, I do not know whether it is possible to work with them instead of merely subduing them. But the “autism” diagnosis has impacted the lives of many people who are capable of at least some communication. These people are dismissed as if it were simply self-evident that the medical professionals understand what they’re experiencing and what the correct response is better than they do. The question is, why should this be presumed as self-evident, given that so many people who deal with autism are openly hostile, unapologetically cruel, and appear to have no empathy at all with the group they casually dismiss as sub-human?
It is not “helpful” for a medical establishment to ignore the real needs of vulnerable people to cater instead to the feelings, biases, and desires of the caretakers. That is IMO why the “neurodiversity” movement exists, and will continue to exist until the problems are recognized, acknowledged, and addressed.
February 14th, 2012 | 3:12 pm | #4
Ugh, I managed to screw up the links even though I did use the preview feature and I thought I had it all correct.
I am so tech-stupid :( sorry about that.
February 16th, 2012 | 8:55 am | #5
Or to put it another way:
At what point should we, as a people, take self-governance away from a class of people?
And do we have the right to determine that a class of people are inherently unfit (with its correlating assumption that we are doing the world a favor by removing their existence from this earth)?
If we had a choice, would we – as a people – choose to cure autism, or would we choose to cure the problems it presents (meaning, for instance, that those who cannot communicate are helped to communicate, and those who cannot control themselves are helped with restraint issues, and so on)?
And then comes the real question: would we still choose to cure autism instead of merely curing its presenting problems if we knew from the outset that the only way to “cure” it is to screen and abort?
To me that is what ‘neurodiversity’ is really about: the question of when and whether we as a people have the right to declare an entire class of people defective, unfit to exist, and/or unfit to enjoy the right of self-governance – especially when such a determination (which applies to the whole class of persons) is based on the problem behaviors and medical conditions of a small subset.
February 18th, 2012 | 6:58 pm | #6
Autism is a huge spectrum. Some people on the spectrum are fully capable of self-governance, and some are not even close to being able to make appropriate decisions for themselves.
Abortion is a non-issue for autism, and it will almost certainly remain that way for a long time. You can’t diagnose autism from the womb. Recent work showing a genetic basis has also shown that it’s not the same genetic basis for even a large percentage of autistic people, and some people who are neurotypical do have that genetic profile but without manifesting any symptoms of autism. There really are a number of underlying conditions that lead to the symptoms that the DSM categorizes as autism. So that’s a red herring.
There are people pursuing cures, and that faces some of the same problems, given the variety of conditions all being called autism. It’s likely that anything producing more neurotypical results in people born with more autistic manifestations is not going to have that effect across the board. But it does raise ethical questions that are worth thinking about.
The answers to those questions, in my view, depends very much on the particulars. Does it help people who want to communicate to do so? Does it help them understand those they have a hard time understanding because of their social unawareness? Those strike me as good things. Does it change their preference structure so much that it makes them feel like different people? That might be seen as a cost. In the end, it might be a cost-benefit analysis. Most medications have side-effects that we might not like.
If I find medication that helps my son control his impulses so that his impulse-control becomes 15-20% of what most kids his age have, I’m going to jump at it, because that’s so much better for him than his current 0% impulse control. Low impulse control is quite simply bad for him. If I find medication that helps balance our sensory integrative needs so that he’s not constantly tempted to push three-year-olds into swimming pools or to topple his 20-month-old brother a dozen times a day, I’m going to consider such a treatment in his best interest. If I find treatments that help him communicate better with actual sentences of English, I will push for them. If I find education and psychological techniques to help him understand the emotions and non-verbal behavior of other people, I will welcome them.
And what is a cure if it’s not that sort of thing? So the notion that a cure is evil is just wrongheaded. It’s awful to spend some much time, energy, and publicity opportunities on the cure issue when there’s such a high need for those who have autism and therefore have ongoing needs. So I won’t complain if anyone argues that the time spent on the cure issue is not the best use of our time, money, and so on. But I won’t accept the claim that there’s nothing in the area of what people might be looking for in a cure that would be a good thing. That strikes me as simply not following from all the correct things the neurodiversity movement says.
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