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When talking to family members of those who have Asperger's (AS), one point I try to make perfectly clear is the vicious cycle within Asperger's of anxiety and sensory integration dysfunction (SID). They drive just about everything we experience, to a degree most do not understand. Anxiety and SID feed on one another and contribute significantly to other symptoms such as OCD, paranoia and rage. I want to give you some examples, to see if this makes any more sense and helps you to understand our functioning any better. First let me say that I believe there are 2 very different subsets of AS. DSM-IV identifies only one of these as stated here. Diagnostic Criteria for 299.80 Asperger's Disorder 1. Qualitative impairment in social interaction, as manifested by at least two of the following: 1. 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 2. failure to develop peer relationships appropriate to developmental level 3. a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest to other people) 4. lack of social or emotional reciprocity 2. Restricted repetitive and stereotyped patterns of behavior, interests and activities, as manifested by at least one of the following: 1. encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity of focus 2. apparently inflexible adherence to specific, nonfunctional routines or rituals 3. stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements) 4. persistent preoccupation with parts of objects 3. The disturbance causes clinically significant impairment in social, occupational, or other important areas of functioning. 4. There is no clinically significant general delay in language (e.g., single words used by age 2 years, communicative phrases used by age 3 years). 5. There is no clinically significant delay in cognitive development or in the development of age-appropriate self-help skills, adaptive behavior (other than in social interaction), and curiosity about the environment in childhood. 6. Criteria are not met for another specific Pervasive Developmental Disorder or Schizophrenia. I have found there is a much broader subset, which accounts for the majority of AS, that is quite different from the textbook DSM-IV criteria listed above. These fit a descriptive pattern I like to call, "The bull in the china shop." You will see why very soon! Many of the same impairments are evident in both subsets such as eye-to eye gaze, facial expression, body postures, and gestures to regulate social interaction, failure to develop peer relationships appropriate to developmental level, lack of social or emotional reciprocity, restricted patterns of interest that are abnormal either in intensity of focus, apparently inflexible adherence to specific, nonfunctional routines or rituals, clinically significant impairment in social, occupational, or other important areas of functioning. What we also see consistently is Sensory Integration Dysfunction, clinically significant anxiety, OCD, paranoia, anger and/or rage, low muscle tone, clumsiness, very low self esteem, preoccupation with the perception others have of them, a strong drive and need to be excepted at any cost, over compensation for lacking social skills and acceptance often misinterpreted as abrasive, rude, or insensitive behavior. We also see chronic lying when perception by others is endangered, bossy and controlling behavior when engaging others, perfectionism and what I call the "I Suck Filter," which I will explain in detail in a later post! These are the individuals that so desperately want to have relationships and be accepted, but they are painfully lacking the skills to secure them. In their attempts to over compensate for their perceived inadequacy, they drive away the very individuals they are desperately longing to engage. They are drawn to much older or much younger individuals, but struggle with same aged peers. They are absolutely brilliant and often have the best of the psychs snowed, as their ability to mask and pretend to be just fine is highly developed, yet they struggle with the simplest of decisions, rarely considering outcomes and negative consequences. Attention span in non-preferred activities is a continual struggle, and conversations are typically revolving around their limited topic(s) of interest. If a topic shift happens, they are quick to revert to the previous topic, where their expertise on the subject leaves them in a rare feeling of control and confidence. It is often commented that they are like talking to an encyclopedia, with incredible knowledge on specific topics and often the source of untold volumes of sometimes meaningless data. They often experience difficulty concluding conversations and don't know effectively when to dismiss themselves. And I am just exposing the tip of the iceberg. There is much more hidden beneath this surface that rarely sees the light of day. We will continue to discuss many more characteristics causing difficulty in coming posts. Now, you might be saying to yourself that many people have these characteristics, but that doesn't necessarily mean they have AS. That's correct. However, there is usually a family history of spectrum disorder and these characteristics impede long-term, independent living, ability to maintain employment, and often lead to chronic depression and suicidal ideation as continual social and emotional failures mount. Now that is not just your typical, run of the mill quirky dude! So you are likely wondering why there is no diagnostic criteria for this other subset I am referring to, and I'd like to address that thought. I can tell you first hand that growing up, I never told others what I was actually thinking, as I feared they would think I was crazy and lock me up! I also feared the worst, which I considered to be rejection of any kind, if I was noted to be different or strange. For the majority of my life, I thought I was the only person experiencing what I lived. As I got better and began working with individuals with ASD's, I realized there were astounding numbers of individuals who thought exactly as I did, but they didn't tell anyone either, least of all their psychs! Yet as I began to share my thoughts and experiences with others, they would come forward telling me of their parallel lives, and the inability for others (lay people and professionals alike) to understand and assist them. That's when I began to realize there was more to this and I had better start paying attention to the details being shared by myself and others, to draw comparisons and hopefully identify some semblance of reason and understanding for the otherwise unwelcome behaviors we manage to consistently engage in. What I am hoping to do is share some stories and examples that might help the outsider put themselves in our shoes or frame of reference. Perhaps then, it will be easier to not only understand, but hopefully foresee and help prevent future difficulties. So, back to the original topic at hand, let's take a look at anxiety and SID, and the role they play in AS. Imagine yourself in downtown Memphis. It's 3:00am and the streets are dark and empty. You're walking alone and there are no others on the streets within view. Suddenly, a large man appears and starts rushing towards you with a gun. What happens to your anxiety level? It goes through the roof as your adrenaline begins to course through your veins. Your sensory system becomes heightened and you are more acutely aware of your environment. You hear every pin drop, you notice every movement in your periphery. Your heart races and your breathing becomes quick and more shallow as you abruptly make your fight or flight decision. Whether you chose to run or fight, there's no question you would not be making the best decisions right about this time. This also would not be the best time to start teaching you a new skill such as calculus! To top it all off, when you finally arrive home, with your mind still reeling from the event and adrenaline not yet calmed, you are greeted at the door by an angry spouse who says heatedly, "I can't believe you didn't clean up the kitchen before you left." Now I don't think I need to explain that there's a good possibility your spouse got slammed in response to that greeting! Even though your spouse had no idea what you had just experienced, your nerves were already over the edge and it took little to nothing to send you the rest of the way over the cliff! When looking at the whole situation in context, understandably so. What I think many do not realized is that most of us with AS stay in fight or flight mode most, if not all the time! It doesn't take a dangerous situation for our adrenaline to course. Our sensory systems are usually hyper aware, and as our anxiety rises, our sensory issues increase, which in turn causes our anxiety to rise, and so on, and so on. The vicious cycle continues and as we reach the proverbial edge of our emotional cliff, other issues such as OCD, paranoia, anger and rage rise commensurately, even though there may be no external reason for such. These continual, emotional and physiological influences have dramatic affects on our ability to make decisions, learn, effectively communicate, build relationships and maintain stable emotional self regulation. Add to the concoction the fact that we are often driven by acceptance and the perceptions others have of us, and we are headed toward disaster. Any of these issues in their own right can be debilitating. Couple all of these with the stress caused by wearing a mask, having the need to maintain the false front that we have it all together and all is well, and meltdown is emanant. Behavioral manifestations of fight-or-flight response in Wikipedia state, "In prehistoric times when the fight or flight response evolved, fight was manifested in aggressive, combative behavior and flight was manifested by fleeing potentially threatening situations, such as being confronted by a predator. In current times, these responses persist, but fight and flight responses have assumed a wider range of behaviors. For example, the fight response may be manifested in angry, argumentative behavior, and the flight response may be manifested through social withdrawal, substance abuse, and even television viewing (Friedman & Silver 2007)." What we often see in those with AS appears to be irresponsible and somewhat "bratty" behavior, sometimes inappropriately perceived as purposeful or defiant. Often argumentative and seemingly egotistical, know-it-all type attitudes prevail, characterized by defensiveness, anger, or rage when challenged or exposed. Marked lack of control with emotional regulation, impulsivity and inability to de-escalate when overwhelmed. I like to compare those with AS to a pressure cooker. Let's say you put a pot roast into a pressure cooker and go to work, leaving it for 8-10 hours building pressure. When you come home and remove the lid, it will explode and you'll have pot roast on the ceiling! If done correctly, you put a pot roast in and ever few hours, you let off a little steam. The pot roast still cooks all day under pressure, but relieving the pressure every few hours will keep the cooker from exploding and getting pot roast on your ceiling. Those with AS are similar. Our SID and anxiety are the pressure cooker, which keep us in fight or flight mode. As the day wears, we continue to build steam and pressure and once we reach the edge of the cliff, it takes very little, if anything, to push us over. To the unknowing bystander or intercepter of our wrath, we appear to blow for absolutely no reason and be highly volatile emotionally. We appear to have 2 moods, everything is great, and OMG you are so dead! What is generally not realized is that sensory overload, heightened anxiety, OCD and paranoia have been steadily increasing pressure, leading up the the eventual eruption. Just as with the pressure cooker, those with AS can also relieve the pressure by engaging in sensory activities every few hours throughout the day. This is letting off the steam, so to speak, preventing a potential future blow. Unfortunately, most of us do not realize we are in the explosive danger zone emotionally, until it's too late and there's no turning back. The goal is to prevent the explosions, not deal with the aftermath. From the outside looking in, it's important to realize that we are very much like that pressure cooker, and at any given time, we can have varying amounts of pressure building. You might just be the lucky one who arrives on the scene, just in time for us to explode! It's not personal! It has nothing to do with you, though we often like to blame everyone else for our difficulties. That's part of AS too, being the victim and not taking responsibility for our own actions and involvement. So, before you jump the case of someone who has AS and has exploded, try to consider how you would have felt having been just accosted with adrenaline raging. How easy would it be for you to maintain a calm, cool, and collected responses? Remember, this is not something typically within their control. This is a medical issue, that has neurological consequences and behavioral outcomes. The behaviors we often exhibit are consequences of the neurological and central nervous system problems we are experiencing, and contrary to popular belief, NOT within our control. We have to be taught how to de-escalate, process emotions, and recognize when we are escalating to begin with. It's a very long and difficult process to learn and overcome, but it's possible. Try to have patience with us in the process! Next post we will look at the "I Suck Filter" and the damaging role it plays in our lives. Look forward to sharing more with you soon! Laura