Determined To Make A Difference

Learning and teaching about autism is my passion! There are very few things I can do that bring me as much satisfaction. The more I learn about this topic, the more I am driven to seek out additional information to fill in the multitude of deficiencies I know I have in my knowledge bank. It's a never ending saga! The more I learn, the more I realize I don't know anything, and just when I'm excited about some new skill I've acquired, it changes. UGH!! For someone with OCD, like me, this is a rather frustrating cycle! Yet I'm determined to make a difference in the field of autism spectrum disorders (ASD's), especially in Asperger's Syndrome (AS), as it seems to be more complicated and misunderstood that the rest.

I have spent a great deal of time reading about and researching ASD's, but what I have started becoming much better at is listening. A very difficult skill for me, yet an incredibly necessary one that I am determined to conquer! Listening to parents, teachers, doctors, therapists, and the individuals themselves with autism spectrum disorder's. I have always said for years that I don't think like others do. I have always been very "off" in the way I looked at things, but I am now finding this to my advantage when it comes to helping those with ASD's. What I have always thought was common sense, doesn't necessarily seem to be common sense to others. Apparently, I have a rather different view of many things, that seems quite second nature to me, but arriving at those same conclusions isn't always such a snap for everyone!

I've decided to test some of my thoughts and theories, and interestingly enough, they seem to be working quite well! No, I don't have the Ph.D. or M.D. behind my name and I don't have the clout of being a well respected, published author on the subject at hand, at least not yet anyway! What I do have though are many of the very same issues we are trying desperately to treat in these kids. I was misdiagnosed as Bi-Polar in my teens with a later diagnosis of ADHD to accompany that. After years of psychotropic medications that not only didn't usually work, but often made me worse, I had to wonder about the accuracy of the diagnosis. Interestingly enough, my young daughter was diagnosed with exactly the same thing, and placed on medications at seven-years-old, before I knew any better! Shortly afterwards, my son was diagnosed with full-blown, nonverbal autism and our lives were never the same.

After doing quite a bit of research to help my son, and realizing this was much more than just a behavioral disorder, a parent asked me to help her child with Asperger's Syndrome. I had no idea what that was, but she told me it was an ASD, so I was intrigued and decided to do a little digging. The more I researched, the more I began to realize that my daughter and I did NOT have Bi-Polar, rather we had a co morbid condition of Asperger's Syndrome and ADHD. Now this made sense! The more I read, the more I was absolutely convinced of this and when I finally approached my psychiatrist about the question at hand, he fully agreed. WOW! For the first time in our lives, we were actually beginning to understand WHY we a bit different and recognizing that was OK!

Looking back over the span of my life up until this time, so many things that had never made sense before, made absolute sense now. The sensory issues, impulsivity, suicidal fixation, anxiety, depression, OCD, paranoia, I lied constantly, hated confrontation, was over articulate but had great difficulty finding my words when in stressful situations, had low muscle tone, poor coordination, was extremely literal, had racing thoughts, obsession with how others perceived me, and difficulty processing information unless it was presented in a visual AND auditory fashion, not easily picking up on things the way others seemed to, and much more. I had difficulty keeping jobs. I was the annoying person who had to know everything about whatever it was I was doing, so I constantly asked questions about details that most didn't even notice. I had to be the best at what I did, was bossy, didn't always understand what should have been easy instructions, I always thought I had a better way of doing things, and of course, rules applied to everyone, but not me! I was special! UGH! These were just the tip of the iceberg, but very clear and present symptoms that most would not necessarily see, unless they were around for extended periods of time and knew me very well, as I was a great pretender and could hold it together for fairly reasonable periods of time, only to fall apart once I got into my safe environment. I looked good to the average passer by, but never made it through school, couldn't maintain relationships, changed jobs as often as I changed my underwear, was perfectionistic to a fault, and had self esteem that was in the toilet and continuing to go down rapidly! I was a mess.

Having children desperately in need of my help forced me to make some decisions that were WAY outside of my comfort zone, and in the process of helping them, I was helping myself unaware! I continues to amaze me when I consider what we are able to accomplish when the lives of our kids are at stake. The rules all change and what was once unthought of, had to be scaled and conquered. It was just not optional. As I became healthier, I began to notice things in the lives of others with ASD's that I realized I used to do, but no longer did. This is when learning to listen became a skill I knew I had to acquire! It's kind of interesting, as I never noticed any of these issues while I was in the midst of the throws of AS and ADHD, but now that I seemed to be on the other side of some of this, it stood out like a sore thumb. I found myself constantly saying, "Oh wow, I used to do that." I never realized what it looked like from the other side and that it was so obviously dysfunctional. I had always thought I had everyone fooled. NOT!

As I started working with more and more individuals with AS, I realized I was seeing things in a perspective most other professionals were not catching. Many of these higher functioning individuals with AS could TOTALLY SNOW the psychiatrists and psychologists, yet they couldn't get things past my radar. You know the old saying, "You can't BS a BSer!" and that's where I found myself a large percentage of the time when dealing with AS issues. The kids and adults I was working with loved me and hated me! They loved me and often told me I was the first and only person who ever truly understood them. I began to realize even some of the best counselors and psych's just didn't think like we did, and now matter how much they "understood" about AS, they would truly never understand why we did some of the things we did, as they didn't live it everyday. For that matter, most of the parents who lived in that environment 24/7 still couldn't understand how we ticked. They were befriended for the first time by someone who truly understood why they did what they did and what drove those behaviors. In the same breath, they hated the accountability I held them to, as they could no longer snow the counselor! What they could normally pull off in the form of excuses or quasi-logical reasoning didn't fly with me for one second, and I called them on it every time. Hence the love/hate relationship. Funny though, they kept coming back for more!

Then there were the outsiders, who looked at me now and said there was no possible way I was ever AS! We all have these symptoms at one time or another, they would say. YES, that is correct, but the difference is in intensity and frequency, and do they interfere with your ability to live a productive and independent life? They obviously were not familiar with my childhood, teen, and early adult years, that I would not wish on my worst enemy! Yet I suppose it is hard to understand this kind of progress from the outside looking in, as it really is quite uncommon. I was way too high functioning and my articulation was outstanding, which was rare even for someone with AS who had recovered. Now, why in the world I would want to claim that diagnosis if I didn't have to is beyond me, but I decided to ignore the naysayers and keep moving forward, as I began to impact so many lives that mainstream medical and psychiatric had never seemed to be able to touch. I'm so glad I did! My fight with AS became doing everything I could to insure NO ONE would ever have to live through what I had in my earlier years. Not if I had anything to say or do about it anyway!

Call me crazy, and believe me you won't be the first, but I can honestly say I truly believe God allowed me to experience so much of what I did in my early life, so I could get well and help others experiencing the same things find health for themselves. It's been an incredibly difficult journey for me on the road to health, but the things I have learned along the way have molded me into a completely different being. Thank goodness! It's a passion for me, as I said earlier. Now I want to help others with AS set out on this journey to health. I realize now there are very few who have the patience, understanding and ability to teach those with AS in an effective manner, and let's face it, it's all about outcomes, isn't it? All the greatest teaching in the world doesn't amount to a hill of beans if it can't be effectively implemented by those who are being taught!

What I hope to do over the next few posts is start to explore the AS mindset and some of the issues that commonly drive us, whether for better or worse! It's not personal and our issues and behaviors are not our purposeful attempts at driving anyone to the edge of a cliff, contrary to popular belief! ASD's are medical conditions that cause neurological problems that result in behavioral outcomes. Understanding these disorders in perspective, from the medical, neurological, behavioral, and emotional standpoints in absolutely critical. It requires a global view, that often goes unseen. Pieces of dysfunction and individual characteristics or symptoms are often noted, yet who is drawing all these things together to look at the global view? It's something we have to start looking at if we are to make progress with individuals who have AS. My hope is that I can let you inside my brain, though a scary prospect, to see things the way we perceive things. Perhaps if you better understand how we think and why we respond the way we do to stimuli, it will help you to change the way you respond, or even better, have you proactively engaging these issues so that you don't have to respond! Prevention is the name of the game in ASD's, and if you understand how we process and think, you can be a few steps ahead of us to help avert what could otherwise be a major problem. And while we are calm, cool and collected, rather than raging, you can learn to appropriately teach us the skills to be successful in future environments we could not navigate before. Prevention, preparation, appropriate training and implementation of those learned skills are how we learn best. I hope in the coming posts, as we start to investigate specific issues, you will see that and understand the why's, so we can move on to the place we need to be to start learning how to overcome AS! I'm looking forward to it!

Laura :)