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.

Sunday, January 18, 2015

Telling My Life Story


I'm often asked by members of the autism community to talk about my life. While I don't mind doing this, it can be somewhat embarrassing for me. I got to thinking about this recently, and I not only thought of explanations for it, but I realized that it probably isn't that uncommon for people to feel uncomfortable sharing their life stories. I thought it might be fun to explore that here.

The first embarrassment that comes to mind is when people tell me that I inspire them. I often feel that people see my story as one of overcoming adversity, of not letting autism hold me back. I guess some parts of my story are about overcoming adversity, but I've never considered autism to be the adversity I've overcome. I just have different experiences that others aren't used to hearing about.

So maybe people are inspired by the amount of adversity I've faced in my life. After all, I've dealt with bullying and some forms, often subtle, of discrimination. Well, the truth is that there are some forms of adversity that I've never dealt with. I've never felt the pressure to do something stupid just to keep from not being cool. The threat of being a social outcast was almost meaningless to me, since I already spent most of my childhood there. It's true that I grew up in poverty with a single mother, but the fact that my mom did so much to keep that from holding me back makes that her story, not mine. The extent to which autism has been an adversity to me was that I had to go out of my way to learn social norms. Even that is offset by my ability to absorb things like math and science.

Perhaps people are just attracted to stories that are different from what they're used to. When I look back on my life, it seems pretty mundane for the most part. I suspect this is common. We live our own lives, so why should your life seem interesting to you? My audience almost always disagrees with me. They haven't lived my life. Ultimately, it matters more what the listener finds interesting than the teller.

I also notice a tendency to choose to share certain details that are relevant to the audience's interests. When I talk to the autism community, I tend to talk more about how being autistic has affected my life. I think most people tend to do this. I don't think it's a conscious effort, most of the time. However, it is more likely to captivate an audience.

That brings me to my next point. People also tend to take interest in unusual similarities to their own lives. There is a reason I, as an autistic person, am often asked to speak to members of the autism community. People like to know that they aren't alone in the world, that there are others who share the same differences that they experience. Even without the need for support, people like to compare notes and see how others have dealt with similar experiences.

One of the reasons I wanted to write about this was to encourage others to share their life stories. I feel that it's a good way to promote the appreciation of diversity in all of it's forms. It can be an eye opening experience to find out how much you share in common with those who are clearly different, or how different you are from someone you would have considered one of your own. The more we learn about each other, the easier it is to see each other as equals.

Telling your life story is also a fun way to learn about yourself. We all have interesting stories. You don't have to have traveled the world or wrestled a crocodile. All you have to do is be honest about your experiences. It still amazes me when I find people enthralled by things that are just facts of life for me.

Even though people like to hear from me, there's nothing special about me. I just know things people want to learn about, I live in a time when people are willing to hear my perspective, and I'm willing to get in front of people and say it. We all have the first two qualities, whether you know it or not. The third is up to you.

Sunday, January 4, 2015

What's it Like to Be Autistic?


Here's one of the questions that an openly autistic person would do well to get used to answering. If you know any autistic people, you've probably wondered about it, even if you've never thought to ask out loud. What's it like from the inside?

Speaking as an autistic person, this is a very difficult question to answer. The simple answer is I don't know. Autism is the natural state for me, and as such, I have nothing to compare it to. Just like you wouldn't be able to tell me what it's like being neuronormal, having never experienced anything else.

While most people seem to understand that answer, I also realize it might be disappointing. Let me see if I can give you a more detailed answer. Please understand that I can only answer from my own experiences and I can only relate them to my own experiences. Some of what I describe here will seem different or foreign to you, and some may seem familiar. Since much of what I'll talk about are things that most people either don't think to share or are uncomfortable sharing, it's difficult to tell which is which.

Autism is a social disability, so experiences with attempted social interaction seems like a logical place to start. Throughout my school years, I was never really able to get the correct social behavior. The people around me would usually let me know somehow, usually by laughing at me. I never understood during that time exactly what I was getting wrong. All I knew was that, even when I was copying the behavior of others around me, it would still be wrong.

Human behavior is frequently difficult to understand for a naturally logical individual. One thing I've learned is that the neuronormal mind must be trained in logic in order to use it, meaning that there is very little logic involved in normal interactions with others. The autistic mind, on the other hand, is highly logical. This means that when we apply our own way of thinking to the behavior of others, most of it won't make sense. That isn't to say that we can't learn it.

Temple Grandin has described autistic people as being anthropologists from Mars. This is a description that has always made sense to me. I am, almost on an academic level, studying my own culture from the outside. In college, I took classes in psychology, anthropology, and even acting, all of which have helped me to better understand the world around me. Of course, having more experience, seeing more interactions between people, and being around less judgmental people have helped as well.

Despite some of the social difficulties I've had, I can think of three types of communities (outside the autism community) that I've felt very comfortable in. In no particular order, the first is hippies, who tend to be very accepting of diversity and non-standard social behavior. Second is nerds. Many of the characteristic autistic traits, such as obsessive interests, focus on details, and memorization of seemingly useless information, are considered normal in nerd culture. Finally, the martial arts community. Martial artists are taught that the skills they learn are dangerous, and therefore, to try to avoid conflict and get along with those around them. If done well, this can lead to some very open-minded people.

Perhaps the biggest reason for social difficulties in autism is a simple matter of where the focus of attention is directed. My understanding is that most people focus pretty intently on facial expressions, body positioning, and tone of voice, starting as infants. There is a strong emphasis placed on the importance of social conformity.

In contrast, for an autistic person, being excluded from the group, while unpleasant, is not completely devastating. However, there is a trade off. Most of us tend to direct our focus to how things work. Whether it's structural, mechanical, biological, ecological, or even linguistic, we tend to excel at looking at the individual pieces of something and figuring out how they work together. I would guess that this is why many of us learn about things that interest us very quickly. Now that I think of it, I've even had to learn about social rules through this lens.

One question you've probably had on your mind since you started reading this is what is the most frustrating part of being autistic? I would have to say that it's people who think they know something they don't. Throughout my life, people have frequently tried to explain how I experience the world, usually without asking me about it first. Of course, they're also frequently wrong.

This might seem harmless. So people think something that isn't true. So what? In fact, it isn't a problem until people start acting on it. Most of the time, it has been in the form of accommodations I didn't need. I remember one teacher that set up a private room for me for when I was overstimulated. It was my choice when to go there. That's an example of something that worked, and was based on ways I actually experienced things. On the other hand, people have also said before that touching me caused physical pain. It didn't. I just didn't care for it. All that belief did was cause people to be overly careful around me and create an unnecessary distinction between me and everyone else.

A related frustration is when I read studies that are based on false assumptions. For example, the use of some chemical has increased, and autism rates are skyrocketing, therefore there must be some connection. Even worse is when the researcher acknowledges that there might not be a connection, but says that we have to relate it to autism anyway to get people to act. I find that to be highly disingenuous, and likely to negatively affect the researcher's credibility later, and it's insulting to us, as it reinforces the view that we're damaged people.

Are there problems or frustrations that come along with autism? Absolutely. Would I want to do away with them? Not really. I've learned a long time ago that the problems I have getting through life come with benefits that I would never want to be rid of. We all have problems as we go through life, and we all have talents and skills that come along with those. Mine are just part of the autistic experience.