Category Archives: About Asperger’s Syndrome

On Being Helpful…

My psychologist described a vicious cycle that autistics go through: “autism leads to social dysfunction, which leads to social anxiety, which leads to depression, which leads to further social dysfunction.” Let’s walk through something that has been bothering me lately…

I have autism, which is largely defined by a set of social struggles. I am well aware of this. I started coming home to my mom in tears asking why no one wanted to be my friend when I was about 5. The problem is that answering that question is really only going to generate more social anxiety and hurt, because the answer is something I can’t really do much about. Most of the time, it comes down my non-verbal signals, but difficulty with non-verbal signals is part of the diagnostic criteria for autism.

Through the years, I’ve had no shortage of people telling me why people don’t want to interact with me. Some just wanted me to go away. Others were probably trying to be helpful, but unless you can tell me how to change it, it still only raises my anxiety and feeds the depression cycle. I understand it, but I feel helpless to change it, which leaves me feeling hopeless. I believe this cycle can be reversed. It looks like this: success leads to confidence, which leads to further success. This actually reduces anxiety, which reduces the negative body language, since most of the negative social traits of autism result from, and therefore, scale with anxiety and stress.

If you want to be helpful and supportive to me, the best ways you can possibly do that are these…
1. Love me and accept me as I am.
2. Communicate #1 to me regularly and in a way that I understand.
3. Teach others to do these things.

Autism acceptance is the battle I’ve chosen to devote my life to, and I can assure you that I will fight as long as I live to make sure other kids don’t have to suffer as long and as much as I have, but a warrior cut off from the supplies he needs is as good as dead.

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What’s Wrong With This Picture?

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I can understand. Being a parent isn’t easy, especially being a parent to a special needs child. You put in a lot of effort and you feel you deserve a little credit. So what’s wrong with posting something innocent like this?

I had a very interesting conversation not long ago with a fellow autistic adult. I observed (with some envy, I might add) that she seems very fluid in social interactions and doesn’t appear to have the difficulties I do. She told me that she puts forth a great effort to maintain that appearance and that it is truly exhausting, but then she told me the worst of it. She told me she feels no one loves her for who she is because no one actually knows the real person she is hiding inside. Then she observed that I seem to have close relationships in which people truly do know me and love me as I am. It’s funny how situations like this make you realize that you don’t really want what you thought you did and sometimes, you get reminded of the treasures you already have, which brings me back to the picture…

This message indicates that hiding the traits of autism is something to be proud of, which means that displaying autistic traits is not. This perpetuates the idea that one needs to be “normal” to fit in and be acceptable. This message also indicates that the parent should get a pat on the back because the child is doing something that requires a constant tremendous effort.

Honestly, I’d be happy to pat you on the back, cheer for you, hug you, or all three if you make efforts to communicate to your child that he or she is lovable as is with no strings attached. I think the important part, though, is to communicate this to the world. Please be mindful of what you share with the world and how you talk about your child. Trust me, your kids are listening.

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Lessons learned as the wife of an Aspie… (a guest post from Kristen King)

I’ll admit, I’m not very good at this. Carlyle is the one who can write so well, but if we ever decide to write that book together, I should start writing some of this down. Raise your hand if communication between husband and wife is difficult. The whole pink versus blue thing is very real and relationships take work and effort. Now, add in Autism, which can be defined as a communication disorder. This can obviously wreak havoc and be extremely difficult for both parties. Communication is hard enough and you add in difficulty on top of that? Since everything in life requires communication of some kind, I think it’s a pretty raw deal.
Okay, so it’s hard, there are barriers, mine fields, struggles and pain. What can we learn from it? What can we DO about it? Part of the problem in communicating is that many of us, including myself, look at the incidents. X was said or X happened. We apologize, say it will never happen again or accept the apology if it happened to us. For those on the spectrum, including Carlyle, they look at every single detail of the situation. They experience and therefore have to process every minute detail. If they don’t get the time to process it in its entirety, those around them will continue (unknowingly) adding to the pain. This results in something we NT’s may see as “dwelling” on an issue. Since the issue wasn’t processed the Aspie will then return to the beginning and the cycle begins again and possibly again.. You get my point. It will continue to be brought up, until they have been able to discuss it while checking for clarification and then putting it to rest. It’s not a matter of “moving on” it’s all about healing from the scene and resetting. Carlyle can come up with great analogies, I’m going to suggest this is similar to a re-boot of a computer. The computer (brain) has to shut down or calm down and then once coming back up from a reboot, it must check through all the systems as it comes back up.
You know how an Autistic child may rock back and forth or even scream out in pain from something we (NT’s) may not even see or hear? They feel things 100x more than we do because of how their brain is wired. This same scenario is what is playing out when Carlyle is hurt, but hasn’t been able to process his feelings to completion. I have had to learn this. I’m a “fix it” personality. I like to jump in and attempt to fix the problem and move on and I’m going to assume that many NT’s are similar. What I had to learn was that I can’t fix the pain. No matter how hard I tried and we spent many years in this vicious circle. I felt like I was going to pay for something I said for the rest of my life. It seemed like we talked it to death and nothing I said helped. Here is the kicker though, once I stopped taking it personally, stopped being defensive and stopped trying to tell him why he shouldn’t be hurt and then simply listened and let him process in entirety, it was never brought up again.
Something else I’m learning from Carlyle is how to “meet” people. Carlyle has this ability to meet others in their pain. Relate in such a way that they feel heard, accepted and understood. He gets it because of the pain he has suffered, but also because he has searched for such friendship for so long. Although we all wish there wasn’t all the pain and suffering in this world, we know that’s not reality. I bet we would all agree that one of the greatest feelings when we are suffering is when we know for certain someone else gets it and can relate. The feeling that we are not alone in this battle. So, all that to say the biggest lesson I have learned is to slow down, wait, listen to understand, check for understanding and slooooow down some more. Did I mention slow down?

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Concerning the Processing of Emotions…

I haven’t written here in a long time, and it’s because I’ve been buried under a mountain of emotional pain. Recent events have allowed me to recover somewhat, but have also led me to believe that this is an important topic for me to discuss. I don’t really see a way to ease into this, so let’s all jump in the deep end together…

It takes me a long time to process emotions. I think the best description is that it is like handling an unstable explosive, such as pure nitroglycerin. Mishandling such a thing can make a big mess and cause great injury. It also goes more smoothly with help. I’d like to point out here something that needs to be very clear: I did not specify negative emotions. Handling positive emotions can be just as dangerous. That said, from this point forward, let’s assume I’m taking about negative emotions unless I specify positive, since there are some differences.

So how do we handle such a dangerous thing? Very carefully. Nitroglycerin tends to explode if you drop it, shake it, or bump it too hard. This means it needs to be moved around slowly. Cooling it tends to make it more stable, and thus easier to handle. We can apply the same concepts to emotional processing. Cooling improves stability, which can be accomplished by separating me from the emotional situation. I can generally do this myself. I’m a big guy, and few people would attempt to stop me from taking my leave. Kids like me, on the other hand, often don’t get this luxury, so keep this in mind. Also, even though I can do this myself, help is beneficial. Sitting with me quietly is very helpful. The biggest issue I have is that it seems people generally seem to want to move to a resolution quickly, which means I have to move the explosives around quickly and risk detonation in the form of a meltdown, or I have to deal with being left behind without any help. Either way, I end up with a new source of emotional pain to add to the original. The best help you can give me is to slooooooooooooow down and work at my pace, which actually ends up being a lot faster with the right help.

What does the process look like? Well, I need to start by defining the issue. This applies to both positive and negative emotions. I am very detail oriented, so I will want to talk about specific incidents and things related to those incidents. In the case of positive emotions, sharing in my joy and excitement over the situation is generally enough to file it away under “happy things” and move on. Positive experiences go bad when I share them and people respond negatively to my excitement. My dad used to always say he wasn’t interested and didn’t want to hear it. Boom! Happy things become sad things just like that. Telling me that I shouldn’t be so excited is equally damaging. From that point, positives are handled the same as negatives, so I’ll move on with negative emotions. As with positives, I will want to get into the details and define the problem. Acknowledging my frustration as understandable, given my perception, is what I’ll need to move forward. It’s really that easy. If you are just helping me process, that’s pretty much the end of it. We can hug or something after, but there you go.

What next? How do we move from acknowledgement to resolution? Notice I just said that I need acknowledgement that my frustration is understandable with a specific condition, which is that we are assuming my perception is complete. From here, I need one of two things. We need to either develop a solution to the problem that makes sense to me (this is very important) or we need to figure out where my perception was incomplete. An example of this might be something that was said that hurt my feelings. I know what was said, but perhaps not what was meant. If we work together until I understand what was meant, then we will have fixed my incomplete perception.

I think I’m going to stop at this point and see what discussion comes up. I’d like this to be a conversation so that we can achieve true understanding.

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Please help me! (a guest post from Kristen King)

“Please help me!” ….something my husband has asked for since he was a very young child and still pleads for, to this day, as an adult. There is a lot of communication and help for adolescents with Autism Spectrum disorders, but where is the help for those kids who grew up with no assistance, understanding or help at all?  Those kids that grew up with so much pain from lack of understanding, from being rejected all their life and from never quite understanding where they fit or why they even exist.  Where is the help and understanding for the spouses, the families that do their best to “help”.  My husband says that your family is the people that walk with you through the bad times..those that help us carry the cross we have been given to bear.  The bible tells us to “carry one another’s burdens” and yet, it seems even the church is lacking in helping these people. How many of us go through daily life with disregard for God’s mandate to love the least of God’s children, to laugh with those who laugh and mourn with those who mourn?  Where is the community, the family that joins together to truly help those in need?  I’ve come to understand that my husband doesn’t say anything unless he has something to say.  So, when he says he’s in pain and needs help, he’s held it in for as long as he can and we are in desperation mode.  I feel so helpless, so very inadequate and alone at times.  But, the truth is, I have never felt so alone, so worthless that I wanted to end it all, as he has.

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The right question…

A week ago, my wife and I were the guest speakers in a counseling class. The topic was the impact of disabilities on the family, but when the students learned that I also have Asperger’s syndrome , they decided they would rather talk about that. It was a great discussion and the students asked very good questions, but then one student asked the question that has stuck in my mind all week: “How can we, not as counselors, but as friends, best reach out to those with Asperger’s syndrome?” I think this question is worthy of a book, which I may attempt to write. Until then, I’d like to share my thoughts from this week.

Hans Asperger wrote:

These children often show a surprising sensitivity to the personality of the teacher. However difficult they are, even under optimal conditions, they can be guided and taught, but only by those who give them understanding and genuine affection, people who show kindness towards them and yes, humour. The teacher’s underlying emotional attitude influences, involuntarily and unconsciously, the mood and behaviour of the child.

I believe this applies to any relationship. Certainly, a friendship requires some learning as we get to know our friend, and I think we are all far more likely to be interested in getting to know someone who shows us understanding and genuine affection, especially if we can laugh with him or her as well.

If you would be a friend to someone who struggles socially, whether you know they have Asperger’s syndrome or not, you have to be willing to show understanding. Especially when I am stressed or uncomfortable, my body language and facial expressions may seem to convey messages that aren’t necessarily accurate. I’ve had several friends say to me that they feel I look angry or like I just want to be left alone. Many of my high school classmates have recently told me that I always seemed like I wanted to be left alone. (Perhaps it was because high school was terrifying to me.) Try asking me if I’d like some company, even if I don’t look very open to it. I’m often unaware of the signals I give off, and I can tell you that I will usually be delighted to meet a new friend. Give me room to be a little different as we get to know each other. I can assure you that I will be whether you let me or not, and I’ll be much more comfortable if you are ok with it. I think you will find that I’m often willing to laugh at my weirdness if I know you love me no matter what.

Speaking of love (and I’m talking about the kind of love shared between friends), my wife often likes to say that I need people to “love out loud.” By this, she means that I need my friends to demonstrate affection in ways that I can “hear” and understand. Different people like to be loved in different ways, and people with Aspergers syndrome are as unique as all others. One thing that we do have in common, though, is that we have difficulty understanding the non-verbal signals that other people use when they interact with each other. I’m not able to see that you love (or like) me by the way you look at me. Especially early in the relationship, I need you to be a bit more verbal. At first, you might tell me that you’d like to get to know me or that you’d like to be my friend. My closest friends often tell me that they love me and show it in other ways as well. In short, try to express clearly in words where the relationship stands. In some cases, that may be as simple as addressing me as “my friend,” or perhaps some funny nickname you and I come up with.

Stephen Bauer wrote, “The common belief that [persons] with pervasive developmental disorders are humorless is frequently mistaken.” My wife and closest friends can assure you that this is very true. Yesterday, I nearly made a good friend spray her drink through her nose and I even got some giggles out of her son. Most humor relies on a shared context in order to be funny. Non-verbal signals often communicate that context. Consider, for example, how you might tell that someone is being sarcastic. I often miss those signals, but that doesn’t prevent me from enjoying humor. It just often takes a different form from what you are used to. I’ve noticed that my humor often gets a delayed reaction because it takes a moment for people to get it. Keep an open mind and let’s learn to laugh together.

My psychologist told me that Asperger’s syndrome leads to social dysfunction, which leads to social anxiety, which leads to depression, which leads to further social dysfunction. By giving me understanding and affection, and in sharing humor with me, my friends have helped me slow down, then stop, and then reverse this vicious cycle. Succeeding socially leads to confidence, which leads to further successes. I won’t say that I no longer struggle, but I’ve come a long way from the deep depression I’ve struggled with. You could make a huge difference in someone’s life. Even better, you could make a friend for life. I love my friends dearly, and I thank each of them for taking the time to ask the right question.

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Concerning direct and indirect communication…

When I explain to others the communication difficulties I have because of Asperger’s syndrome, it seems people understand fairly quickly that I might have difficulty with irony, sarcasm, or other forms of humor that rely on context or body language. It’s not uncommon for me to just say to a friend, “I don’t get it,” and for my friend to explain what was said. Such misunderstandings are rarely an issue unless someone is actually making fun of me, but they are related to a much bigger issue – indirect communication.

Direct communication is communication in which the meaning is contained primarily in the words. As a parent, you might say to your child, “Tom, please stop hitting your sister.” This is very direct, as the entire meaning is contained in the words. On the other hand, indirect communication relies on mutual understanding of the context. In the above example, the parent might say, “We don’t do that.” The child then has to figure out whom is being addressed, who “we” are, and what “that” is. The process of analyzing this is probably second-nature for NTs (neurotypicals or non-autistics), but it is much the same as sarcasm to me and sorting it out can often take me quite a while.

For me, this problem is compounded by a few factors. In general, indirect communication is viewed as more formal, and its use is often expected between strangers or in more formal relationships. In such cases, when it becomes apparent to the other person that I’m struggling with the communication (either because I have told them or I just look confused), such people often repeat themselves more slowly or more loudly. The conversation usually declines from there and I leave it feeling confused and stupid, even when I ask direct questions or express a need for direct communication.

I think this explains why I communicate well with people after they get to know me, because the relationship is less formal and direct communication is more acceptable. I just wish I could find a way to help those that don’t know me so well understand that I need communication to be more direct. I’m open to ideas…

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