Sunday, February 15, 2015

Medical Model Vs. Social Model for Autism

You may notice that disability rights activists appear to see disabilities in a different light from the general population. Why is that? Well, there are two ways to look at a disability: the medical model and the social model. Both are equally valid, but have different uses. After I describe the two models, I would like to apply them to the disability I'm most familiar with, autism.

Let's start with the medical model of disability, since it's the one people are most familiar with. The medical model can be summed up as being the way a doctor might look at a disability. The purpose is to describe the deficits and inabilities associated with the disability. It strives to find the differences from abled people, and likely causes for those differences.

In terms of autism, the medical model states that a person may not fully understand social interactions, and appear to be lacking in empathy. The person may appear socially withdrawn, pursuing narrow interests. He/she will often follow strict routines, or perform repetitive, stereotyped movements.

The medical model also looks for causes. Is autism caused by vaccines? Air pollution? Chemicals in our food? Or is it simply genetic, and we're only learning in recent decades what to look for?

Since the medical model is focused on determining the exact nature of a disability, it can be used as a starting point for understanding. Even a disabled person can make use of it to better understand him/herself. Once we know the exact nature of a disability, it's easier to understand how that disability can affect a person's life.

However, there is a problem with the medical model. With its focus on a scientific and medical point of view, it can be easy to lose sight of the fact that we're looking at human beings, and not simply a set of traits.

This is where the social model comes in. The social model of disability takes a much more humanistic approach. The focus is on the ability, rather than the inability. The goal of the social model is to reduce limitations, while still honoring the diversity of human abilities.

My favorite explanation involves a person who is unable to ascend a set of stairs. According to the medical model, this might be because of severe nerve damage that has limited the person's proprioception to the point where it has effectively no function, compounded by reduced muscle tone in the legs from non-use. The social model would say it's because there is no ramp. Both views are correct, but while one helps to understand the condition, the other helps a person accomplish every day tasks.

Other areas we can see the social model at work are in the existence of sign language, service animals, and Braille. We all recognize the meaning of a white cane. These are all ways in which various disabilities have been integrated into our society, without needing to see them as problems that need to be fixed.

Now the question is how do we apply the social model to autism? Because of the variety of ways in which autism might manifest in each individual, it's difficult to come up with a single, clear cut answer. But there are a few things to keep in mind.

First and foremost, as with all disabilities, we should never lose sight of the fact that we're dealing with actual people. It may not seem intuitive to talk directly to a person, rather than through a caregiver, that seems socially withdrawn, but doing so, at an age appropriate level, is the most likely way to make a person feel included.

Repetitive motions, also called stims, are an important coping mechanism. I could write an entire post just on this subject. Until relatively recently, conventional wisdom was to suppress stimming. However, the result of doing so is usually a meltdown. For now, I'll just say that autistic people should be allowed to stim, so long as there is no danger of self-harm or damage to surrounding objects or people.

Adherence to routine can be viewed as an attempt to reduce unpredictability throughout the day. Many autistic people have a poor working memory, meaning it can be difficult to keep track of what you're doing. An established routine enables a person to overcome this problem by performing daily tasks in a preset manner, and reduces the likelihood of needing to adapt to unexpected circumstances.

These are all things that can help an autistic person function in daily life. But how can we use the traits of autism to allow a person to really excel?

To start, let's reexamine how we look at some of the traits. One of them is intense focus on details. Probably a more concise way to say that is attention to detail. We normally consider that to be a good thing. It's a trait that can lead to talent in art or similar trades. In a workplace environment, an autistic employee would likely be suited to detail-oriented jobs.

But I think we can go even further than that. Remember the narrow interests? I prefer to think of them as focused interests. An autistic person's interests may not be as broad as a neuronormal person's, but they tend to run much deeper. Most autistic people can learn about their interests very quickly. This can be put to use in a variety of ways, depending on the interest and the person. Be creative.

To sum up the answer to the original question, disabled people look at disabilities differently because they tend to use the social model. They don't see themselves as broken. They see themselves as unique and capable human beings with their own strengths and weaknesses.

Sunday, February 1, 2015

Vaccines: An Autistic Perspective

With the outbreak of measles coming out of Disneyland, vaccines have been in the news a lot recently. Thanks to discredited doctor Andrew Wakefield and model Jenny McCarthy, it's practically guaranteed that autism will enter any discussion on vaccines. While an expert in autism may occasionally be consulted, it seems as if the autistic perspective is consistently left out.

I could use this post to state the inability of vaccines to cause autism, or to state that the apparent regional correlation between vaccines and autism may be caused by the fact that those regions tend to have better access to medical care in general. I could talk about the difference between unbonded mercury and mercury in the form of a salt, such as thimerosal. I could bring up the proven effectiveness of vaccines using comparisons to parts of the world where vaccination is not readily available. All of these have been discussed at length, and doing so seems to do little to counter the trend of not vaccinating.

Instead, I would like to talk about how we in the autistic community see the issue. We have some points of view that never get addressed in the public discussion.

To a certain extent, some of us feel slightly responsible for the spread of preventable diseases that result in the deaths of children. I know it isn't our fault. We didn't do anything to cause it. All we did was exist, while others spread the idea that it was because of mercury being injected into us. What most autistic people are seeing is that people are, en masse, rejecting proven preventative medicine based on a hunch.

The primary vaccine in the crosshairs seems to be the measles, mumps, and rubella (MMR) vaccine. Vaccines for the three diseases first became available in the 1960's, and were combined into one in 1971. Most people agree that the apparent explosion in autism started in the 1980's. Several of us in the autistic community dispute that there's an autism epidemic, but that's another subject. The point here is that if the MMR vaccine were to blame, the increase should have been seen in the early 1970's.

I know I said I wasn't going to talk much about the science, but I want to mention one thing. One of the reasons vaccines are blamed for autism is the mercury. This would imply that autism is a form of mercury poisoning. Let's have a look at some typical symptoms of mercury poisoning (source:
*Peripheral neuropathy (itching, burning, or pain).
*Skin discoloration.
*Desquamation (shedding or peeling of skin).
*Profuse sweating.
*Tachycardia (fast heart beat).
*Increased salivation.
*Hypertension (high blood pressure).
Children may show the following symptoms:
*Red cheeks, nose, and lips.
*Loss of hair, teeth, and nails.
*Transient rashes.
*Hypotonia (muscle weakness).
*Increased sensitivity to light.
*Kidney dysfunction.
*Emotional lability.
*Memory impairment.
I don't see most of those symptoms in higher occurrence among my autistic friends than I do in the general population. In fact, none of them are listed in the description of autism.

Some say that mercury damages neurons on contact. As far as I know, this is true. However, if this is how vaccines cause autism, it requires autism to be a form of brain damage. That seems like it would make sense to someone who doesn't know how the autistic mind works. The problem is that most of the autistic people I've known in my lifetime have been absolutely brilliant, and have been able to easily accomplish mental tasks outside the abilities of neuronormal people. I can't really say about the others, because of their inability to communicate.

Perhaps the brain damage caused by the mercury only damages the ability to communicate. I see two problems with that explanation. First is that it provides no explanation for the increase in mental abilities in other areas. Second is that brain damage isn't that predictable. The mercury would damage whichever neurons it came into contact with. Those may be in the part of the brain that control communication, or it may happen somewhere completely different. It would depend entirely on where the mercury arrives first.

There's one final point I want to say about mercury. Unlike mercury poisoning, no one has ever died from autism.

That leads me to the biggest point I want to make in this post. Let's go ahead and assume for a moment that vaccines can cause autism. In recent years, children have been dying from preventable diseases, such as measles and whooping cough. Many of us in the autistic community take offense that it would be preferable to risk their children's lives than for them to end up like us.

I understand that an autism diagnosis can be initially devastating for parents, especially combined with some of the things parents are still told about the diagnosis. However, it is becoming more widely acknowledged that an autistic person can live a happy, fulfilling, and productive life.

Refusal to vaccinate is a public health crisis. Diseases that have been almost stamped out are making a comeback. Please don't use our existence as a reason to risk the health and lives of your children and those around them.