I just wanna go home…

Some time ago, a young friend of mine wrote an article for a Florida newspaper. She wrote about a grocery shopping trip with her brother. At one point, he started screaming, which drew stares from all in the immediate vicinity. She had been in the same situation many times before and didn’t feel like explaining it all again, so she simply pointed to the button he wears that says he has autism.

Families have to eat. That’s just a fact of life. My friend will continue shopping for groceries. Sometimes, her brother will be with her, and this will happen again. All too often, though, families with children who have hidden disabilities won’t go to church because they experience the same thing there. It’s stressful, parents worry that others view them as bad parents, and they feel that no one likes their children. They already experience the stress of the grocery store and other things they have to do. They don’t want to add another stressful activity if they don’t have to. I know many families in this situation. I’ve also been THAT kid, and even as an adult, I’ve had many of my fellow Christians tell me how different I am.

I recently listened to my favorite song ever for probably the millionth time (I’ve listened to it 14 times today alone), and a part of the song really touched me in a way that it hadn’t before. I’d like to ask a favor of my Christian friends. I’d like you to read these words, and the next time you see me or someone else being a little different, try to imagine that person saying this to you…

I hope you stare just long enough to see
The heart that’s beating here inside of me
Beyond all of the things you may think you know
I’m just a kid trying to make it home, that’s it
No more, no less

– “No More, No Less” by MercyMe

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“I’m not trying to hide anything. I wear it on my sleeve.”

Those words are from one of my favorite songs, “No More, No Less” by MercyMe. These words are true of me in more than one sense. Two years ago, I decided to get a tattoo on my left arm as a way of mourning the loss of its use…

"But he said to me, 'My grace is sufficient for you, for my power is made perfect in weakness.' Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me." - 2 Corinthians 12:9

The cruciform sword serves to remind me of Christ’s death on the cross for me and that God’s word is “sharper than any two-edged sword” (Hebrews 4:12).  The reference to 2 Corinthians 12:9 reminds me that  God’s grace is all I need and that His strength shows through my weaknesses.

Today, I got a new tattoo, but this one is a way of celebrating the progress I’ve made and the changes in my life over the last few years…

"Bear one another’s burdens, and so fulfill the law of Christ." - Galatians 6:2

I’d like to thank my friend Mike Munster for his most excellent artwork.

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Concerning disabilities and being human…

In this post, I’d like to examine some of the things people say about disabilities and the attitudes behind them. I may ramble a bit, so bear with me…

In my previous post, one of the things I wrote is that I need my friends to believe me when I say I can’t do something. That seems to bother some people. They view such statements as defeatist. I’m not afraid of challenges. My left arm is paralyzed. Sure, I can ride a motorcycle, but if you tell me to clap my hands, I’m going to have to say “I can’t.” I’m not a defeatist; I’m a realist. Please understand that an ability in one area does not imply a lack of impairment in another.

Upon learning that my arm is paralyzed, people often say something like, “I don’t see a disability; I see a person,” or “You seem quite normal to me.” I understand that this is usually in an effort to be polite, but I argue that not seeing the disability means not seeing the whole person. Experience shapes us; we change as we adapt. My disability affects my life experiences, so it has had a significant role in forming the person I have become. Another thing to consider is that these statements rely on the assumption that disability makes one less. This is called “ableism.”

The Oxford English Dictionary defines “ableism” as “Discrimination in favour of able-bodied people; prejudice against or disregard of the needs of disabled people.” Fiona Campbell provides a more academic definition: “A network of beliefs, processes and practices that produces a particular kind of self and body (the corporeal standard) that is projected as the perfect, species-typical, and therefore essential and fully human. Disability is then cast as a diminished state of being human.”

A supervisor once said to me, “Disabled people don’t ride motorcycles.” He was well aware of my disability. He continued on to make his point, which was that, since I don’t “act disabled,” I can’t ask for the accommodation I was asking him for. This stems from the same kind of thinking as the more polite comments I mentioned earlier. In essence, he was saying that disabled people look and act differently from “normal” people, and because I look and act in ways that fit his standard of “normal,” I can’t be disabled. It seems pretty silly when I put it that way, doesn’t it?

I am fully human AND I have a disability. Let’s start with that…

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Filed under Disability, Discrimination, Work

Building a wheelchair ramp to your heart…

Liane Holliday Willey, author of Pretending to Be Normal, wrote, “My deep, dark fear, the one that makes my bones scream, is that there are AS people in search of friendships who will never find any, no matter what they do, solely because of their AS. … I know the reality that will wound them as they stumble forward, deeply lonely, and ever more estranged from others.”

After learning that I have Asperger’s syndrome, I set about learning what my weaknesses are and how to overcome them. I developed many tools and skills that have actually helped me in socializing with others. Still, I went back to my psychologist in discouragement and told him that, no matter what tools I have or skills I learn, I still can’t overcome the disconnection from others that comes with Asperger’s. If a person is unable to walk, a wheelchair might help that person get around better, but it won’t help him actually walk. To help such a person such a person access a building, a ramp is often needed.

I’ve had several conversations with friends over the last several months on what I need from them to help me fully enjoy the relationship. In the end, it seemed what we came up with are things that would benefit all relationships. I’d like to share some of them with you…

1. I need my friends to help me understand the rules.
Relationships have rules, and just like any other aspect of socializing, the rules are fluid, contextual, and usually communicated non-verbally. This puts me in the position of having to hit a moving target while blind-folded, as the criteria for Asperger’s syndrome include, “marked impairment in the use of multiple nonverbal behaviors … to regulate social interaction.” (DSM IV) I have a default set of rules that are designed to keep me out of trouble, but unfortunately, they also keep me at a distance. Here’s a great example: I like hugs, and I will happily hug virtually anyone. However, since not all people like hugs, a hug is not always the best thing for a relationship. My default rule is that I will not touch anyone without permission. Some friends have told me they dislike hugs, so I will never hug them. Others have told me that I should hug them whenever I see them. Still others will ask me for hugs or warn me when they are about to hug me. I’m ok with all of this. The important part is that those friends who have discussed this with me have helped me be more comfortable in the relationship by making the rules clear to me.

2. I need my friends to help me understand how they feel about me.
People are generally quite verbal when expressing negative emotions. I usually don’t have any difficulty knowing when someone has a problem with me. Sadly, positive emotions are expressed in more subtle ways. Think about the ways you know that your friends love you. Most of it is non-verbal. I need more overt expressions. As my wife puts it, I “need people to love out loud.” Try hugging me, spending time with me talking about something I’m into, or just tell me.

3. I need my friends to help me understand how to respond to their feelings in a way that builds the relationship.
I can usually identify when a person is sad or upset, but I have a tough time figuring out what to do. When it’s someone I care about, this will usually cause me to panic. It helps me greatly if you can tell me what you need. I will happily listen for hours, or give you a hug. I just need to know.

4. I need my friends to believe me when I say I can’t do something.
It may be possible for me to do whatever it is, but not at that moment, or not in any way that I can see. If I say I can’t, let’s back away from it. Maybe we can take another look and find a way for me to do it. If not, please don’t hold it against me.

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A confession and a challenge to my fellow Christians…

I have a confession to make. I haven’t written anything here in quite a while, but not because of a lack of ideas. It’s because I’ve been struggling with some of the same junk I’ve struggled with my entire life. Like most aspies, I’m well aware that I’m different from most other people. Even if I were unable to observe for myself that there are differences, people often point them out to me. I have often thought that I simply do not fit anywhere, and because I do not fit, there is no place for me. Because there is no place for me, I should not exist. I have been thinking up ways to end my existence since before I was a teenager.

I have been wrong.

In 1 Corinthians 12:12-20, the Bible tells me:

12 For just as the body is one and has many members, and all the members of the body, though many, are one body, so it is with Christ. 13 For in one Spirit we were all baptized into one body— Jews or Greeks, slaves or free—and all were made to drink of one Spirit. 14 For the body does not consist of one member but of many. 15 If the foot should say, “Because I am not a hand, I do not belong to the body,” that would not make it any less a part of the body. 16 And if the ear should say, “Because I am not an eye, I do not belong to the body,” that would not make it any less a part of the body. 17 If the whole body were an eye, where would be the sense of hearing? If the whole body were an ear, where would be the sense of smell?18 But as it is, God arranged the members in the body, each one of them, as he chose. 19 If all were a single member, where would the body be? 20 As it is, there are many parts, yet one body.

It is true that I do not function like most of the people around me, but neither does the nose function like any other body part. The conclusion that I do not fit does not follow from the premise that I function differently. I confess that I was wrong to walk away from the body as a young man, but I realized that and I am back. However, I know that I’m not the only one that left because of feeling different.  Many have even been asked to change or leave. Continuing in 1 Corinthians 12, we read:

21 The eye cannot say to the hand, “I have no need of you,” nor again the head to the feet, “I have no need of you.”22 On the contrary, the parts of the body that seem to be weaker are indispensable, 23 and on those parts of the body that we think less honorable we bestow the greater honor, and our unpresentable parts are treated with greater modesty, 24 which our more presentable parts do not require. But God has so composed the body, giving greater honor to the part that lacked it, 25 that there may be no division in the body, but that the members may have the same care for one another. 26 If one member suffers, all suffer together; if one member is honored, all rejoice together. 27 Now you are the body of Christ and individually members of it.

My challenge to my fellow Christians is this: Reach out and reconnect with our missing parts. Help them find that place where they honor God by functioning as they were made. Recognize that, if they don’t seem to fit, you may be the part needing adjustment. I invite you to learn more at http://www.keyministry.org/.

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Filed under Church, Disability, Encouragement

On Autism and Empathy…

Imagine that you are engaging in an activity that you enjoy that requires the use of your hands. Now, imagine that you have arthritis and it hurts to use your hands. At first, you might adjust your technique in hopes of avoiding some of the pain, but eventually, the pain will exceed your enjoyment of the activity, and you will begin to avoid the activity altogether. It is likely that many of my readers will know someone who has experienced this. Some of my readers will have experienced it themselves. Personally, I know people who have given up motorcycling, an activity that I enjoyed with them, because of arthritis or other conditions that made it painful for them. I feel the pain of their loss.

There is a widespread belief that autistic people, including those with Asperger’s syndrome, lack empathy because they do not express it as others do. I disagree. I definitely feel empathy for others, but I struggle to express it. There is a reason for that.

Among the criteria for Asperger’s syndrome in the DSM IV is “marked impairment in the use of multiple nonverbal behaviors such as eye-to eye gaze, facial expression, body postures, and gestures to regulate social interaction.” Let’s think about how empathy is typically expressed for a moment. It is sometimes expressed with words, but those words are usually accompanied by nonverbal behaviors.

Impairment in the use of nonverbal behaviors is only the beginning, though. In their 2007 paper, “The Intense World Syndrome – an Alternative Hypothesis for Autism,” Markram, Rinaldi, and Markram propose that “The autistic person may well try to cope with the intense and aversive world by avoidance. Thus, impaired social interactions and withdrawal may not be the result of a lack of compassion, incapability to put oneself into some else’s position or lack of emotionality, but quite to the contrary a result of an intensely if not painfully aversively perceived environment.”

What if you had some condition that made interacting with others painful? Can you imagine that? In much the same way as with arthritis, you might try to find ways to avoid the pain while still interacting, or you may avoid interacting altogether. That’s my struggle.

As with mild arthritis, there are ways to mitigate the pain. A motorcyclist with mild arthritis might adjust the controls or use heated gloves. He or she might also wait for the best weather. For me, interacting with others is less painful in quieter and less crowded settings, so I avoid it when it is more crowded or noisy. I don’t think that will surprise anyone, but what may surprise you is that I feel empathy intensely. I struggle when people have intense personalities or are expressing themselves with intensity. I won’t say that it is wrong for them to do so, but I would appreciate some understanding for how it affects me if such a person needs to interact with me.

I think the real problem with autism and empathy is that it is difficult for others to see the world as we do. I hope I’ve helped you see more of what we see. Feel free to ask questions if I can help you understand further.

This is a huge topic, and there are quite a few very talented autistic writers who would love for you to hear what they have to say about it. I would appreciate it very much if you would take the time to visit my friend Rachel’s site, Autism and Empathy.

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Filed under About Asperger's Syndrome, Communication, Empathy, Relationships, Social Interaction

Concerning social anxiety and meltdowns…

Recently, in an online group of adult aspies I belong to, meltdowns have been a topic of discussion. This is a very serious aspect of Asperger’s syndrome that can create tremendous social struggles. It is among the reasons some adult aspies fear to leave their homes. With the permission and encouragement of the other members of that group, I’m going to use some of the insights from that discussion, as well as my own experience, to help my readers understand meltdowns and how they relate to the social anxiety so many aspies experience.

I want to begin by defining what a meltdown is. According to Merriam-Webster, the definition that best fits what I am describing is “a breakdown of self-control (as from fatigue or overstimulation).” Notice that it does not reference autism or Asperger’s syndrome. I believe it is possible for anyone to experience a meltdown. As I told a neurotypical friend not long ago, I believe anyone would display the same behaviors after being tortured sufficiently. Also, notice that a meltdown is different from a tantrum, though they may look similar, especially in children. The purpose of a tantrum is to manipulate, as most parents are well aware. A child throwing a tantrum will stop once they get what they want. A child having a meltdown is not really concerned with your response to the behavior. The only thing on that child’s mind is the condition that triggered the meltdown. The meltdown will continue until the child recovers from it, which won’t happen unless the condition that triggered it is changed or removed, or the child is distracted from it. The same is true of adults.

What triggers a meltdown may vary from person to person, but there are some themes that came up in my discussion with other aspies. All of us mentioned some form of sensory overload as a trigger, though some of us expressed specific sensitivity to different things. Also mentioned were forms of information or emotional overload. Here are some specific examples from our discussion: sudden or repetitive loud noises, high-pitched noises, flickering (or fluorescent) lights, bright lights, unexpected changes, disruptions in routine, crowds, other people getting too close, and more information or emotional data coming in than one can easily process. This is not an exhaustive list, and it should be noted that triggers may vary between individuals. I, for example, enjoy the sound of a motorcycle, while many aspies will struggle with it. If there is an aspie in your life that you care about, it is a good idea to learn what his or her triggers are, as well as to identify signs that a meltdown is approaching. You just might be able to help…

I believe most of us aspies are aware when we are approaching meltdown, but if we see no immediate way to change or get away from the trigger, we will likely feel helpless, which only makes things worse. Below are some descriptions of how it feels from some of my aspie friends:

“I get tense. My answers go from overly verbose to overly terse. My breathing changes, my jaw starts to clench and I get stomach cramps. Recognizing all these symptoms has helped me avoid major meltdowns for several years now, but not always- sometimes they still sneak in. I will become forgetful about things I shouldn’t such as eating, drinking water or even going to the bathroom!”

“I’ve sometimes predicted meltdowns an hour before they even happen because I can ‘feel’ when something bad’s about to happen. later warning signs include pacing back and forth, uneasiness, headaches/stomachaches, sweating, and one time I even fainted.”

“For me it feels like most people describe as a panic attack – stomach aches, trembling, trouble breathing and then feel like crying. I feel like I have to escape the area and hide by myself – I get really stand-offish and I also forget to eat, sleep or do basic things that I need to.”

“I freeze, just stop functioning if it’s really bad, and I feel like I’m so panicky I’m going to explode. I pace, I rock, I flap (my ‘flapping’ is actually with clenched fists.) Sometimes the stimming helps dispel the energy. I can’t talk.”

“I feel suddenly overwhelmed, my heart rate speeds up, I start to breathe fast, feel very panicky, lose any ability to speak coherently or at all, and all I want is to get out of there FAST. Sometimes I burst into tears. It’s a horrible feeling.”

As you can see, the descriptions are very similar, and they give some clues as to external behavior you can watch for. Pacing, shaking, and becoming unusually quiet are external signs many of my aspie friends mentioned. Another friend of mine mentioned that people have told him they feel uneasy and intimidated when he approaches meltdown. I’ve heard similar about myself. I can assure you that I will not intentionally hurt anyone, but if you feel that way with me and are unsure how to handle the situation, I would suggest that giving me some space and a bit of quiet is probably the best course. I am very open to discussing this with others, though, and I have made a few people close to me aware of what triggers I struggle with, what signs to watch for, and how to help me recover. I strongly encourage you to discuss this with any aspies you care about. I also encourage my fellow aspies to open up to their friends. It has helped me tremendously.

I hope at this point that my readers understand that this is a real struggle and one that we can’t always control. It’s certainly not something we choose to do, and the fact that you may not see or understand the trigger doesn’t make it any less real. Many of us are afraid to leave our homes because we may find ourselves falling apart in an unfamiliar situation with no help in sight. Call me nuts (many aspies will), but I’m sometimes willing to risk it, and I have had meltdowns around other people. Some people have helped me when I needed it, and others were less kind. I suppose the bright side is that I know who my real friends are, and I hope other aspies are encouraged to step out into this messy world. On behalf of those that do, I’d like to say that I don’t believe anyone should have to apologize for a disability. I don’t think any person with a heart would expect, much less demand, an apology from a wheelchair user who needs a door held. I have two arms, but I think any person with a heart would be willing to offer brief assistance after I explain that my left arm is paralyzed. In the same sense, I believe a person who feels offended by the behavior of an aspie having a meltdown should be willing to understand after being given an explanation. To those who disagree, I ask: What if it were you?

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Filed under About Asperger's Syndrome, Disability, Social Interaction