Sunday, April 19, 2015

Acting With Autism


Many are familiar with the artistic achievements of autistic people. There is no shortage of highly detailed drawings and paintings created by autistic hands. Autistic people have also created beautiful works of music, literature, and dance. With logical thought, attention to detail, an often creative mind, and a thought process outside of the norm of society, there is little doubt that autism is synonymous with art.

But what about the art of acting? Acting is a direct representation of human behavior and interaction with other people. Surely a social disability like autism would get in the way of that.

As it turns out, there are quite a few accomplished actors with autism. In fact, many autistic people who have tried acting feel that their autistic traits actually contribute to their ability to perform. It's even likely that acting can help autistic people to better navigate society.

The first thing that comes to mind is that when acting, there is usually a script and a fair amount of rehearsing. Obviously, that isn't the case in improvisational acting. However, when a script is provided, it does help to know ahead of time what you're saying and doing. It makes it easier to not miss cues or have to stop and think about your response.

Another obstacle that I've heard mentioned is that autistic people tend toward honesty. In fact, many autistic people are practically unable to lie. How is it that an autistic person can portray anyone but themselves on stage?

The answer is simple, really. In acting, there is no intent to deceive. Everyone knows that an actor is simply playing a character. During the performance, there is no pressure at all to be your true self.

The most obvious and apparent obstacle to acting would be the accurate portrayal of human behavior. It would seem that, since this is the most defining characteristic of autism, this most fundamental aspect of acting would be the most difficult. After all, we tend toward logic, and, as I've said in past posts, human behavior tends to be the opposite of logical.

In fact, we can make very effective use of our logical and analytical minds to portray normal human behavior. We can do this the same way we learn anything. There may not be much in the way of logic behind human behavior, but there are patterns.

Simply observing human behavior and recognizing the patterns can teach us a lot about how neuronormal people interact. We can then mimic those patterns on stage. In some ways, it may even be easier for us to do this as an outside observer. We can approach these observations without the same kinds of expectations that a neuronormal would, meaning we can perhaps learn more from each observation, comparing it to previous ones.

Another thing we have going for us is that we don't have an innate understanding of human social behavior. Most people learn social behavior from a desire to fit in. They simply mimic the behavior of those around them, knowing instinctively that that is the correct way to interact with others.

As children, most autistic people don't really connect our behavior to how others see us. We tend to stop trying to mimic others when it's made clear that we got it wrong, but never explained how. Because of this, we tend not to learn about appropriate social interaction until we're older. We have to think about it on a conscious level. The fact that we have to keep the social rules in the front of our mind translates to being able to portray such behaviors during a performance.

I said early on in this post that acting can help autistic people learn to live in a neuronormal world. I hope by now you might have some ideas how it might. I've spent the last several paragraphs talking about the ability to learn about social interaction and human behavior. It should be obvious that these same lessons can be applied off stage as well. I think in many cases, acting may be the motivator to learn about social interaction.

I can think of one further obstacle to autistic people acting. That would be the nervousness of getting on stage. Many of us tend to be shy. Why wouldn't we be? Many of us have spent much of our lives getting shot down when we tried to interact with others. It would seem that the natural shyness that comes after that would interfere with our ability to get on stage in front of a large number of people.

The truth is this is a problem for any actor. It's generally just scary to get up in front of people and, let's be honest, make a fool of yourself. First, many autistic actors, as well as autistic people doing other types of performances, find it easier to visualize an audience as a single entity, or even to ignore them entirely. You're there to perform, not to interact with the people watching you. It also helps to keep in mind that those people in the audience came, often paying good money, just to see you make a fool of yourself (also known as acting).

There are many other fears involving performance and what can go wrong. I won't get into all of them here, but there are many ways to get around those fears. It shouldn't be hard to find techniques that will work for you.

To be clear, acting is not for everyone. Some people can never get over their fear of the stage. Others just have no interest in it or don't enjoy it. My point is just that acting should not be seen as being outside the abilities of autistic people. Like any interest worth pursuing, it can be very beneficial to the person doing it. And of course, the most important thing is to have fun!

Sunday, April 5, 2015

The Limits of Religious Freedom


It has happened. Certain forms of discrimination are now legal in the state of Indiana. In case you haven't been paying attention to the news for the last two weeks, Governor Mike Pence (R) of Indiana signed into law a bill that would prevent the state government from interfering with the religious practice of people.

Sounds reasonable, right? Well, there are two major problems I can see. First is that the bill defines a person as an individual, a religious organization, or a business. Businesses now have the right to free practice of religion in Indiana. The second problem is that many business owners have determined that serving certain people is a violation of their religious beliefs.

Since I normally write about autism, let me get this out of the way now. I don't believe that this law will result in autistic people being discriminated against. First, disabled people are a protected minority. Even though that often isn't very strictly enforced when it comes to autism, I don't know of anyone claiming that autism violates their religion.

As an advocate for equality, I feel I should stand up for other minorities as well. Since sexual preference and gender identity are not protected minorities under Indiana law, the people most likely to be negatively impacted by this law will be the LGBT community.

To fully understand what's going on here, let's go back to the beginning. In the 1960's and 70's, the US Supreme Court began to determine that limits can be placed on religious freedom if those limits apply to everyone, not just those practicing the religion. Most notably, Native American religious practices were attack by these rulings, famously including restrictions on the use of peyote during religious ceremonies, an action that affects no one but those who voluntarily take part in the ceremonies.

To counter these decisions, the Religious Freedom Restoration Act was passed by unanimous vote in the US House of Representatives, receiving only three votes against it in the Senate, and signed into law by President Bill Clinton in 1993. On a side note, contrary to the assertion of Gov. Pence, then not-yet-senator Barack Obama did not vote for the bill for obvious reasons. Since the passage of the RFRA, several states have passed bills affirming that it applies in their states.

So if other states have passed religious freedom laws, why is Indiana different? In part, it has to do with how the word 'person' is defined in the bill, including a partnership, a limited liability company, a corporation, a company, a firm, a society, a joint-stock company, and an unincorporated association. This, combined with certain absences from protected minorities in the state of Indiana, means that a business that asserts a religion can deny service to LGBT customers on religious grounds.

In fairness, Gov. Pence has stated that this law isn't about discrimination against gay people. He said that it simply puts a higher level of scrutiny on discrimination by government entities against religion. Let me translate that. In most states, when a person makes a discrimination complaint against a business, it's up to that person to prove the discrimination happened. Under this new law, when action is taken on a discrimination complaint by a government entity, the government entity will be required to prove that it is not infringing on the business's religious freedom.

As I understand it, a business still cannot claim religious freedom to refuse service to protected minorities. That means there is a very simple fix for this law. Simply declare sexual preference and gender identity to be protected minorities. Gov. Pence has stated that he will not seek to do this.

I've heard some people say they don't have a problem with this law because we have a right to discriminate in the United States, and why would you want to shop at a business that wants to discriminate against you anyway? At least now we'll know who they are.

I have a couple of problems with this mind set. It's arguable whether we have the right to discriminate against others. Whether we do or not, we don't have the right to run a business. Much like driving, it is a privilege granted by the government, which can be taken away if it is done in an inappropriate or dangerous manner.

We've already made the decision that businesses are not allowed to discriminate against certain minorities. In the 1960's, whites' only lunch counters were common. Even restrooms and drinking fountains were segregated. And yes, religion was sometimes used as a justification. Lyndon Johnson signed civil rights legislation into effect to counter this.

Why would we want to patronize businesses that discriminate against certain minorities? Well, we probably wouldn't, especially if they discriminate against minorities we might belong to. I'm familiar with this idea, since there are certain businesses I don't patronize to avoid any of my money being donated to Autism Speaks, an organization I have many problems with. However, I don't care that much what a business owner's opinion on minorities might be, as long as none of the businesses resources or income are used to act on it. You go into business to run a business and make money, not to exercise religion or force your values on others.

On one final note, I am absolutely in favor of religious freedom. Religion is an important thing for a lot of people. However, the line we've historically drawn is that you cannot use your religion against others. It's important to remember that in a country where everyone is free to worship as they please, or even not at all, none of us have the right to force others to believe as we do.

Sunday, March 15, 2015

Autism Acceptance Month


For years, April has been observed in several countries around the world as Autism Awareness Month. Because of this, autism is now a household word, and most people are at least somewhat familiar with the kinds of challenges we face. With some help from the internet, the autism community is more connected than ever.

There's no question that autism awareness has led to some important accomplishments. However, I think it's time to take the concept even further. Some autistic-run organizations, such as the Autistic Self-Advocacy Network (ASAN), have proposed that we make the change to Autism Acceptance Month.

It might seem like a small change. Maybe unimportant, or strange to even consider. Awareness to acceptance? Let me see if I can sell you on it.

First thing, we're not removing anything from the spirit by taking the word 'awareness' out of the name. After all, it's hard to pro-actively accept something that you aren't aware of.

I think the only problem many of us in the autistic community have with Autism Awareness Month is how the awareness seems to be implemented. Most people seem to approach it the same way you would approach cancer awareness, as a horrible disease that affects millions of people, and needs to be stopped as soon as possible.

Most autistic people feel that's a poor representation of how we see ourselves. We recognize that we have different challenges that can make life difficult for us. However, we don't feel that this is a good reason to change who we are.

In addition, certain rhetoric, such as that of reclaiming lost children, can be damaging to some autistic people. You have to remember that this is how we were born, and it's how we'll always be. The notion that a person must be normal in order to qualify as a full person or to be seen as valuable to society can lead to severe depression when it's discovered that that's an impossible goal.

Another thing I often hear this time of year is to say that if a person displays a vaguely autistic trait, then they might be autistic. For example, if you see a child screaming in public, remember that they might be autistic. I find this to be useless, accomplishing nothing except creating unnecessary barriers between autistic and normal people.

Instead, let's try to keep in mind that autistic behavior isn't so different from that of a normal person. To use a similar example, if you see a child that you know to be autistic screaming in public, try to remember that most children use some form of tantrums to alert nearby adults that something is wrong.

So what should we be observing during Autism Acceptance Month? I would say that the focus should be on the positives. Recognize the positive traits of autism and think about what autistic people are good at. Remember the autistic people in your life. And above all, never forget that no matter what we look like or how we act, we are people, just like you.

I don't mean to ignore the negatives. We've all heard about social difficulties, problems reading nonverbal communication, repetitive, stereotyped motions (also called stims), adherence to routines, and narrow interests. Those are very real, and can be problematic in certain situations.

However, I believe most of the positive traits are the same traits as the negatives, but in a different context. Let's examine that with the above examples.

Let me go ahead and start at the end of the list, with narrow interests. I prefer to think of them as focused interests. In fact, the narrowed focus allows us to learn in depth details about that interest very quickly. Most of us will branch out into related subjects when we find we have to learn about something else to learn more about our interests. This also fits with the way most autistic people learn, starting with specifics and branching out into more general subjects.

As for routines, most autistic people, and in fact, most people in general, don't always like to deal with the unexpected. Many of us also need to take time to process how to handle a situation. Having a routine helps because it simultaneously creates a preset series of situations, meaning the thinking has all been done ahead of time, and limits the likelihood of unexpected circumstances.

I know part of the problem is that routines can sometimes be inefficient. Think about how many neuronormal people you know with inefficient routines. I don't mean to say just let it go, but when we're talking about acceptance, we should allow the same amount of leniency for inefficient behaviors toward both autistic and normal people.

Stimming is another coping mechanism. As far as I can tell, there are two main reasons to stim. One is to keep the mind running during times of high activity or near inactivity. The other is to burn off nervous energy to diffuse an impending meltdown.

In the spirit of acceptance, I should point out that stimming is another thing that neuronormal people engage in. Have you ever found yourself tapping a pen? That's the first type of stimming. How about nervously pacing? That's the second type. What would happen if someone were to stop you from either? Considering that, it should come as no surprise that stopping it isn't usually the best idea.

The social difficulties are a little tougher. You have to bear in mind that autistic people tend to be highly logical. As any Star Trek fan can tell you, human interaction tends to be highly illogical. Simply put, our brains are not wired to pick up on social rules. We're capable of it, but only through deliberate learning and conscious observation.

On the other hand, having a highly logical mind can be a huge advantage in several areas, including science, music, language, and many more.

One final note, take a moment to think of the autistic people in your life. What have they contributed to your experience on Earth? What would your life be like without them? It's likely that you know at least one or two autistic people, even if you don't know it.

To paraphrase notable autism activist Ari Ne'eman, normal should not be the goal. Happiness should be the goal. If you can, try to learn from us, autistic people, about autism this Autism Acceptance Month.

Sunday, March 1, 2015

Special Announcement: Day of Mourning

On this day, March 1st, disability rights groups from around the world are remembering the lives of disabled people who were killed by their families. Over seventy people with disabilities were killed by family members over the past five years, with at least ten in the last year.

Too often, we are told to sympathize with the victims' killers. Those reporting the deaths seem to forget that the victim was a human being. All lives matter, including those of disabled people.

Please join me in remembering these people. The following is not a complete list.

Lexie Agyepong-Glover, 13
Faryaal Akhter, 2
Zain Akhter, 5
Casey Albury, 17
Caylee Anthony, 2
Karandeep Arora, 18
Angelica Auriemma, 20
Zahra Baker, 10
Leosha Barnett, 18
Charles-Antoine Blais, 6
Benjamin Barnhard, 13
Markea Blakely-Berry, 16
Jeremy Bostick, 11
Gabriel Britt, 6
Scarlett Chen, 4
Johnny Churchi, 13
Julie Cirella, 8
Daniel Corby, 4
James Joseph Cummings Jr., 46
Laura Cummings, 23
Ryan Davies, 12
Christopher DeGroot, 19
Peter Eitzen, 16
Payton Ettinger, 4
Maxwell Eyer, 2
Marcus Fiesel, 4
Jeremy Fraser, 9
Glen Freany, 11
Betty Anne Gagnon, 48
Jared Greenwood, 26
Pamela Camille Hall, 59
Francecca Hardwick, 18
Walter Knox Hildebrand Jr., 20
Naomi Hill, 4
George Hodgkins, 22
Kenneth Holmes, 12
Tom Inglis, 22
Gerren Isgrigg, 6
Chad Jackson, 25
Christian Clay Jenkins, 14
Tony Khor, 15
Daniel Kirby, 4
Ethan Scott Kirby, 3
William Lash III, 12
Tracy Latimer, 12
Daniel Leubner, 13
Jori Lirett, 7
London McCabe, 6
Katie McCarron, 3
Christopher Melton, 18
Jude Mirra, 8
Emily Belle Molin, 85
Noe Nedina Jr., 7 months
Chase Odgen, 13
Pierre Pasquiou, 10
Tiffany Pinckney, 23
Kyla Puhle, 27
Criste Reimer, 47
Rylan Rochester, 6 months
Rohit Singh,7
Ajit Singh-Mahal, 12
Alex Spourdalakalis, 14
Calista Springer, 16
Ulysses Stable, 12
Melissa Stoddard, 11
Shylea Myza Thomas, 9
Lakesha Victor, 10
Shellay Ward, 7
Courtney Wise, 17
Lloyd Yarbrough, 62

Ten Years of Autism Speaks: The Autism Community's Response


The world's largest autism charity, Autism Speaks, has now been in existence for ten years. To celebrate, the organization has launched a Twitter campaign, #AutismSpeaks10, where they have asked people to share comments about how Autism Speaks has affected their lives during the past decade. The autistic community used the hashtag to do just that. Here are a few examples:













This is only a small sample of the response that took place. Most of what I quoted here was from the first few days, but the conversation has continued to today.

I know what you may be thinking. To a certain extent, I did choose tweets that were opposed to Autism Speaks. However, when you ignore those posted by Autism Speaks themselves, founders Bob and Suzanne Wright, and various politicians, this is the general tone of the vast majority of tweets under this hashtag.

Autism Speaks has responded to this takeover on the part of the autistic community by creating a new hashtag, #AutismChampion. The result was much the same. Again, the autism community leaped into action to state their champions. For many, Autism Speaks and its founders do not make the list.

This raises an important question. Should we really continue to support an organization that is so emphatically opposed by the very people it claims to be trying to help? This seems to be a sign that they aren't representing the needs of the community. After ten years of ignoring us, I think it's safe to say that they aren't going to listen.

In case you're wondering, I'd like to briefly explain how Autism Speaks has touched my life. Few entities have worked so hard to spread so much misinformation and cause so much fear and pity. Autism Speaks has given me a sense of purpose, to counter the negative messages they spread.

Thank you, Autism Speaks, for giving the neurodiversity movement something to gather around. In the words of Twitter user @AutisticWiki, We no longer ask that you accept us. Now @autismspeaks , we just want you to get out of the way. #AutismSpeaks10 #ActuallyAutistic

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: https://en.wikipedia.org/wiki/Mercury_poisoning#Signs_and_symptoms):
*Peripheral neuropathy (itching, burning, or pain).
*Skin discoloration.
*Swelling.
*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.
*Insomnia.
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.