Monday, September 30, 2013

Comparing Apples and Oranges

I came across this article, and I just had to respond. So I sent off this email to both of the authors.
I read your article regarding the criminal culpability of successful vs unsuccessful psychopaths, and I would like to point out that you showed a common misunderstanding of the nature of autism.
The term 'empathy' is used to describe three broad domains of social ability -- social perception, social cognition and emotional empathy. Autistics and psychopaths have distinctly different profiles across these three domains.
Social perception, the ability to recognize and interpret facial expressions, is impaired in both autism and psychopathy, although the impairment is more severe/generalized in autism.
Social cognition, the ability to infer what others think or believe, is impaired in autism, but not in psychopathy. Indeed, in order to be competent at lying and manipulation, an individual must have intact social cognition (many autistic individuals can't lie, and those who can are often quite poor liars).
Lastly, emotional empathy refers to experiencing emotions that are more appropriate to your perception of another's situation, rather than your own situation. It is important to note that accurate perception of another person's situation can be affected by social perceptual and social cognitive abilities. However, when studies ensure that the autistic individual is aware of another's person's emotional state, they show emotional empathy at a typical level. In contrast, psychopathy causes a severe deficit in emotional empathy.
With regards to the moral/conventional distinction, research has shown that autistic individuals are not using a simple rule of 'actions that cause distress are wrong'. Specifically, when the person's distress is unjustified (such as a child crying over not getting an extra share of a fairly-distributed resource), autistic children, like typical children, do not have much sympathy for the 'crybaby'. There are also many anecdotal examples of high-functioning autistic adults presenting moral arguments that use basic principles of morality while going against the rules they were taught about behavior. The debate about treatment of autism is a clear example, with many autistic people who underwent typical treatment practices arguing that these practices are wrong because they cause harm. (See this blog post as an example.)
Comparing successful psychopaths to high-functioning autistics is like comparing deaf people to blind people - they may both have sensory (or social) disabilities, but the nature of their difficulties is completely different.

[PS: Actually, comparing apples and oranges is not actually an example of what that idiom is generally used to mean. Apples and oranges have a lot in common, since they're both fruit. They are both sugary gifts from plants intended to entice animals into distributing their seeds in a little pile of fertilizer.]

Sunday, September 08, 2013

Why Would I Hate You?

Recently, I came across this wonderful documentary on FASD. When I was watching it, at first I was expecting it to be the usual thing of adoptive and foster parents talking about how awful their child's birth mother was and how she damaged their child. But in fact, every mother in this documentary is a birth mother of a child with FASD, and the focus is on accepting the fact of FASD, owning up to the effects of their drinking, and getting the right help so they children can do the best they can do.

What I found particularly striking was the accounts that mothers had of explaining to their child that he or she had FASD, and it was caused by their mother drinking during pregnancy. Firstly, as a person with a developmental disability, I would like to point out how important it is, to the disabled person, to know that there's a name for their condition, they aren't alone, and it's not their fault that they're struggling with things other people find easy. For anyone with a developmental disability, if they have enough verbal skills to understand what you're saying, it is helpful to talk openly to them about what they have and how that affects them. (And even if you think they don't understand, to be on the safe side, talk to them about it anyway. You never know if they might understand more than you realize.)

But for a biological mother to tell her child about FASD must be especially tough. From the child's perspective, it's an explanation for their struggles, but from the mother's perspective, it's an admission of guilt. It's clear, from these mothers' accounts, just how tough it was to tell their children about FASD. One mother even said: 'I told Faith that I wouldn't blame her if she was so angry with me that she never wanted to talk to me again.'

Her daughter's response was probably not what her mother expected: 'Mom, why would I hate you? Why would I be angry with you? You didn't drink because you wanted to hurt me, you drank because you didn't know any better. I'm just glad to know that I'm not stupid.'

Her reaction is typical. None of the mothers who reported telling their children about FASD seemed to have gotten a negative response. In every case, the FASD person immediately forgave their mother. They didn't hold any resentment. And although it clearly took their mothers by surprise, and probably took many other people by surprise too, it really doesn't surprise me.

Firstly, research has shown that, compared to self-reports, other people consistently underestimate how happy a disabled person can be. There is this perception that having a disability is this horrible, devastating thing to deal with, and this is simply not borne true in the actual experience of living with a disability. Although some disabilities are certainly easier to deal with than others, most are far better to live with than most people think. And this is especially true for congenital disabilities, where the person has never known any different, never lost something they've come to count on. FASD is a congenital disability, so the person with FASD has never experienced life without FASD. It's hard to miss what you never had.

FASD is also a developmental disability. And I know, as an autistic person, how developmental disabilities affect characteristics that are basic to your identity. I can't hate autism without hating myself, and I suspect this is true for most developmental disabilities - if the person truly understands the pervasiveness of the disability's impact.* So if an FASD person has a good self-esteem, chances are they don't hate having FASD. Why would they resent someone causing it?

Then, there's the easy understanding of addiction. I don't know what it's been like for those kids, growing up, but I suspect for many of them, this is not the first time they've heard their mother talk about alcoholism. Depending on when she stopped drinking, they may even have seen her drinking, and seen her in the early stages of recovery. They've learnt from the start that alcoholism is a disease and not willful behavior, just like my brother and I learnt early on what PTSD was and how people might really be reacting to a past event that vaguely resembles the current event. If alcoholism was talked about as openly in their families as PTSD was in mine, they'll understand already why their mother drank.

Even if it wasn't, I suspect some of the characteristics of FASD may make understanding addiction easier. In particular, FASD impairs executive functions. As someone with executive dysfunction, I'm continually surprised at how much people think other people can control about their behavior. I'm so used to having difficulty controlling my own actions, it makes it a lot easier for me to imagine someone else doing something they don't really want to do. Addiction, therefore, is likely to make intuitive sense to someone with executive dysfunction - it's another kind of loss of control. I may not have had an addiction, but I have missed appointments I really wanted to attend, and been late for classes I enjoy, and lost objects I really wanted to keep. I know that desire is not the only determinant of behavior. And people with FASD probably know this too.

And lastly, there's someone they love and cherish. She's admitting a wrong she did to them, and she's clearly very sorry about it. In fact, judging from the emotional reactions that merely recounting the conversation provoked, I'm guessing most of these mothers were crying as they told their children about FASD and how they caused it. There's the person they love, crying and apologizing. It would take a pretty strong resentment for them not to want to comfort her and make her feel better.**

* I've seen some autistics people who think autism is just sensory overload and stimming. Those traits are fairly peripheral to identity, and you can hate those without hating yourself. (I hate sensory overload - I don't think it's possible not to hate it.) But when it comes to things like how you think and feel, that's a different matter.

** Or psychopathy, but the available research shows no association between psychopathy and FASD. Although reactive attachment disorder can cause psychopathic-like traits, most of these kids have probably not gone through enough to cause RAD. They were lucky to have mothers who got into recovery and have taken fairly good care of their children.

Tuesday, September 03, 2013

Overweight People in Wheelchairs or Scooters

[Note: This is aimed primarily at people outside the disability community. Most of this stuff should be familiar to many disabled people and their supporters.]

Many people are unable to walk, and use wheelchairs or scooters to get around. There are also many people who can walk - at least a few steps - but with difficulty. If their walking is poor enough to seriously impede their everyday living, a wheelchair or scooter can make a big difference to their lives. Even if a person can walk, if they don't have the endurance to walk as much as most people do in an average day, or if they often suffer falls causing serious injury, they still need a wheelchair or scooter.

A manual wheelchair requires that the person grab the wheels and push them. It can be used by someone with good upper body strength (such as a person with a spinal injury low enough to leave the arms unaffected). Some people do not have the strength or coordination to use a manual wheelchair, even if they can use their hands for other tasks. Some people can use a manual chair, but don't have the endurance to use it all day. Those people can use a motorized wheelchair or a scooter if they need to do a lot of traveling.

For the most parts, motorized wheelchairs and scooters do the same sort of thing. Both are mobility aids that allow a person to get around without having to stand up and walk. A scooter is more often used by people who can walk short distances, because it's easier to get in and out of than a wheelchair. However, it can often be more a matter of personal preference than type of disability, and some people use both wheelchairs and scooters at different times. Many people tend to react differently to a wheelchair as opposed to a scooter, but in reality there is not much difference between them.

People who use wheelchairs or scooters have the same variety of features as people without disabilities. Some are short, some are tall. Some have blond hair, some have darker hair. And they can range in weight just as much as non-disabled people do, for the same reasons. In many cases, their weight has nothing to do with their disability.

Lifestyle can play a part in weight, but it is far from the only factor. Many medical conditions can cause a person to become overweight, such as hypothyroidism, diabetes, kidney failure, Cushing's disease (affecting the adrenal glands) and many more. Although a few of these conditions can be affected by lifestyle, most are predominantly genetic. In addition, normal variation in genes can also contribute to differences in body weight, with some people naturally predisposed to gain weight more easily. Just because someone is overweight does not necessarily mean they eat too much or get too little exercise. Furthermore, although severe obesity is dangerous to a person's health, many people think someone is somewhat obese when their weight is in fact healthy. Especially for women, our ideals about weight are often unrealistically low, and many people who are considered appropriately skinny are actually endangering their health by being underweight.

In some cases, a person's weight and their mobility impairment may both result from the same medical condition. For example, diabetes can cause a condition known as diabetic neuropathy, which can cause difficulty walking. There are many other examples where a metabolic disorder can cause both weight gain and mobility impairments. In the majority of these cases, the person would still have a mobility impairment if they lost weight.

Inactivity can also contribute to gaining weight. While most people don't exercise as often as they should, for people with mobility impairments, it can be considerably harder to get enough exercise. Due to their disability, they spend most of the day sitting, while other people are walking around. And many people with disabilities need specialized equipment and/or trained personnel to help them exercise, making exercise more expensive and inconvenient for them. (And if an untrained person tries to assist them, this can sometimes result in injury - for example if they try to stretch a limb that can't stretch as much as normal.)

Many people, when they see an overweight person using a scooter, they assume the person is too lazy to walk. But there are many different reasons why a person, overweight or not, may need to use a scooter, and many disabilities are not readily visible, especially if you're not a trained medical professional. You should never assume that you know why a person is using a mobility impairment unless they themselves have told you. And if you're a stranger to them, you have no right to expect them to explain their disability to you.