Thursday, September 16, 2010

I'm Not Mad... Am I?

I'm Not Mad... Am I?

I had a very interesting conversation this week with a fellow individual with Asperger's (AS) and we were talking about our inability to sometimes recognize the emotions we are projecting out towards others.

As I continue to work with individuals with ASD's, I see a very specific situation continuing to rise to my attention. We often are oblivious when it comes to recognizing that others rarely perceive what we are actually feeling. In other words, we are not good at "showing" accurate emotions to display what's going on inside. Our actions and body language often tell a tale that is not in sync with and often far from what we know to be true.

I recently watched a conversation, or rather a debate, take place between a group of individuals, one of whom was an individual with AS. As he tried to explain his position on the topic at hand to the others in the room, you could see his frustration and anger rise. They just weren't seeing his point of view, which he happened to be quite passionate about, and it seemed the more intently he tried to explain, the more heated the conversation got. His face turned red, the volume of his voice rose significantly, and he began to lean in towards the others, his body language signifying his intensity and intent on changing every mind there.

Interestingly enough, when I spoke with him afterwards about the situation, he said he was absolutely not defensive, heated or angry, yet every person present would have bet their life otherwise. This is a common occurance and the more I see it happen, the more confident I become that these individuals really do not know how they are coming across! When confronted with the scenario, they are usually dumbfounded and often even hurt that anyone could have taken what they were saying out of context to the point of assuming they were mad or defensive. It's kind of an interesting dynamic, as the very same people will then see the identical behavior in another and take great offense, feeling as though everything is targeted at them and as though they are being attacked.

This whole scenario once again goes back to my last post, and the often inability or limited ability to think outside ourselves. It's so critical for others to understand that the self-consumed and seemingly selfish nature of those with ASD's is not what it seems. It's not a matter of not caring, not having an emotional connection, or not having sympathy or empathy. It's also not a matter of being selfish because of ego or internal wants and needs. It's more a matter of being completely overwhelmed by our environment and so many issues within ourselves (anxiety, sensory, OCD, etc.), that we are consumed with what's happening within, let along bringing additional outside issues into the equation!

Haven't you ever had a day where you've had so many difficult things happen, that you feel as if you will completely shut down if you have one more set back? Days where you are so overwhelmed it's impossible for you to think about one more tiny task, as you're spent on what's currently on your plate and the thought of one more thing will just send you over the edge? Welcome to our world! That's often how many of us feel on a daily basis, but don't often have the means to appropriately articulate that to others. Something to consider as well, is that we often don't know we are in that state. Sounds kind of strange, but just follow me for a second.

If you are born blind, then that's all you have ever known. At the age of 15, how would I then try to teach the concept of the color green to you? It's impossible, because you have no frame of reference for colors. I could explain a leaf to you, as that's something tangible you could touch and feel to understand, but an abstract concept like color would be more than challenging. We have to take into consideration that many of us with ASD's have lived every single day of our lives, or at least as long as we can remember, with very heightened anxiety, OCD, paranoia, sensory integration dysfunction and many other issues. If that's all we have ever known, then that's "normal" to us. We don't identify ourselves as anxious if that's how we have always felt. That's our "normal". Only if our anxiety was heightened far beyond what we normally experience, which would be difficult, would we be aware that something is different with our system.

What's interesting here, is that the level of emotions and stimuli we typically experience on a daily basis, would be considered by most as high adrenaline, or "fight or flight" mode. In comparison, most would only experience that level of heightened anxiety and senses if their life was truly in danger.

Imagine if you will, being accosted by a thief at gunpoint. Your sensory system is on high alert, your heartbeat increases, your respiration slows, your bloodflow is more restricted in your extremeties and pushed to your core. WHY? Because your body senses your life is in danger and it's converting all your resources to either fighting or flight. Self preservation is the name of the game, and whether or not someone just loaded the dishwasher incorrectly is not even a consideration at such a time!

Haven't you ever heard the stories of a mother who has a child run over by a car, and somehow in their heightened adrenaline fight or flight mode, they manage to pick up the car to remove their child from under? It's AMAZING what our bodies are capable of in that state. The strength, the rage and influx of emotion can be absolutely incredible. Most rarely, if ever, experience that amount of adrenaline. Those of us with ASD's, on the other hand, live like that daily and have to find ways to temper that heightened state. It's a very difficult balancing act and often more than a full-time venture. If most or all of our time and energy is spent controlling our mood and sensory modulation, how reasonable is it to expect we can monitor the body language and mood modulation of others?

That's not to say we are off the hook and get away scott free with our issues, but it is to say that we have to be TAUGHT how to do this. It's not learned by osmosis! Interestingly enough, we are often only able to learn these things when we are NOT in fight or flight mode. Teaching someone geometry when they have just been robbed and are in fight or flight mode is not a great idea. Their ability to focus, concentrate and stabilize their mood is impossible at best. You wouldn't attempt to teach them until several days after, once the adrenaline had calmed down and they have had time to ramp down from the experience. Likewise, our loved ones with ASD's are very difficult to reach in fight or flight mode. We usually have to bring them down a few notches before they have the ability to truly listen, observe and learn what needs to be taught. Once we accomplish that, THEN we are able to teach mood modulation skills, de-escalation interventions, and many other sensory and self-help skills that enable them to both recognize and eliminate the reactive behaviors that a hyper adrenaline state produces. They then have the skills and ability to stand back and process through information before acting. Once they have a handle on their own system, then they are freed up to notice more about their environment and others that participate in it. It's then we can teach social and other relationship skills that often are underdeveloped.

There's so much more to discuss within this particular topic. We will explore this in more depth in the next post. Stay tuned!

Laura Corby :)

Saturday, September 11, 2010

Excuse Me, I Speak Autism!

Excuse Me, I Speak Autism!

I remember some time ago there was a line in the movie, "Airplane" where this old grandmother type says, "Excuse me, I speak jive!" Many other comments have since come from that funny snip, but one that flies around my office quite often is, "Ask Laura, she speaks Autism!" Though this is often said in jesting, there's also a good bit of truth to the statement. In my years of working with individuals with ASD's, I have found we do think quite differently than others and we do express ourselves differently. As I work with parents and their children, I notice there is a HUGE disconnect in understanding. It's as if they are speaking different languages and I am often acting as the interpreter. Though I seem to understand both sides of the conversation, the other two parties rarely understand one another and a good bit of explaining has to be done to get them on the same track.

I see this especially when it comes to relationships with adults, such as marriage or dating. Quite often those of us with Asperger's and HFA assume that others completely understand where we are coming from, as if they can do the Spock Mind Meld and see directly into our thoughts or beliefs. More often I find that others don't understand emotional things the way we seem to explain them, and our passion about things comes off as anger or indifference, which is rarely the case at all.

One of the most difficult journeys coming out of the frey of ASD is learning to think outside our self. What I mean by that is we will often do for others the things we would love to have done for us. That's our way to show love and affection, as it's all we know. Many would say, "What's wrong with that?" Well, there are several issues there. One of the biggest issues is that everyone is different and shows emotion and care in different ways. The things that might float our boat may not in fact be the things that are longed for by our significant others. Assuming that others know our wants and needs by osmosis is a very risky venture! And assuming others want the same things that are important to us is just as risky! Both parties end up feeling dejected, while both are adamant they are doing everything they know to do to make the other person happy. TRUE... BUT... if each person is doing what "THEY" want and not what is needed by their significant other, there are problems afoot! Talk to you partner, ask them what they need to feel loved and cared for. What are the things that you can do for them that make them feel significant? Don't assume you know what those are, or you may be in for quite a surprise! Likewise, make sure you are articulating your needs to them as well. In this realm, it always comes down to commuication, or lack thereof, that can make or break a relationship of any kind.

Learning to communicate specific wants and needs in a way others can clearly understand, and finding a way to learn and understand the wants and needs of others, so we are able to meet them, continues to be one of our greatest deficits. Social and emotional reciprocity is not always our strongest skill, but with practice comes great improvement. Another practical tip is to ask for examples. So often someone tells us what they would like us to do, but if we are speaking different languages, we may not be interpreting things the way it was intended. Whenever I give instructions to an individual with an ASD, I will then ask, "OK, now what did I just say?", followed by, "Now what does that mean? Give me some examples." We are very good at regurgitating information we have been given, but that doesn't always mean we understand what we have just been told. If there is any misunderstanding, using this tip will identify it quickly and give the opportunity to clarify.

I'm going to continue along this line of thinking in my next few posts, and spell out some of the thought processes that happen in the mind of those of us with Asperger's in particular, though other ASD's often share some of these characteristics. I'm hoping by giving some specific examples, you may see a light bulb come on regarding thought processes you may not have understood from a loved one with ASD in the past. Hopefully, we can be an interpretation tool to help get you all on the same page.

Laura Corby :)
Autism Solution Center, Inc.

Tuesday, September 7, 2010

Do You Have Your Special Needs Trust Set Up Yet?

Do You Have Your Special Needs Trust Set Up Yet?

What? No you say? Well then, this blog post is not only timely, but necessary!

A friend of mind was injured on a camping trip this past weekend. Fortunately, he was there with some friends and family, so when he injured himself and fell to the ground, there were others there who were able to go after his daughter with autism, who was running away from the campfire! He made a comment that I hear far too often in my line of work. He said that his situation brought home the reality that he will not always be able to single-handedly care for his daughter, and he felt he had not appropriately planned?

I hated to hear that he had such an incident, yet I was relieved that he was realizing how important it is to plan for our special needs kids. There will come a day when we are no longer here or able to care for them, and the more planning we do in advance of that date, the better.

Most individuals in the U.S. do not realize that if someone with special needs has greater than $2,000 in assets, which is not much, it can affect their access to government funded assistance. So, as an example, a well meaning aunt can leave $2,500 in her will to a special needs child, and if that is not run through their special needs trust, that seemingly small donation can cut off access to medicaid/medicare and other long-term government assistance plans for those with disabilities later in life.

The best suggestion I can make is to talk to MetDESK - they are a division of MET Life that handles special needs trusts and they do the consults for FREE. Here's the website where you can get more information and schedule an appointment to talk to someone highly skilled in the laws regarding these trusts:

There are also attorneys out there who do special needs trusts, but I have met more of them that don't understand the details than those who do. My suggestion to everyone is to educate yourself on the law and the facts, so you do not have to be 100% reliant on someone else. What if they are wrong? That's not something you want to find out about too late! There's some great information on this page explaining the trust and how it effects benefits, etc.

Definitely do your homework and talk to MetDESK, just to make sure you have your facts straight. They can help you to determine where to go from there and what the needs are in your specific case.

Hope you find this helpful!

Laura :)