Misdiagnosis, then Correct Diagnosis

Robert Dewaele 

Today’s story was contributed by Robert Dewaele from the U.S.A.

A couple of months ago, he came across my YouTube blog and became intrigued with what he described as a “very lucid explanation of what it means to be an Aspergian”. He hopes his story will emphasize the critical need for an accurate diagnosis.

Misdiagnosis, then correct diagnosis…

My Asperger’s diagnosis story. Robert Dewaele 

I’m a 62 year old male from the United States. I currently work as an agricultural crop insurance claims adjuster. I’m also a wood and bronze sculptor. I’ve always been an introverted person, who has sought to avoid social situations. I’m much happier pursuing solitary endeavors and I’m quite certain this part of my personality had much to do with me taking up sculpting.

From my late teenage years onward, I began to realize that I was suffering from emotional depression. I didn’t mention this to anyone else, but my mother told me later that she realized that I was depressed, but didn’t know what to do about it. It seemed that my depression worsened over the years.

My depression went untreated until the age of 31. About that time, I became acquainted with a psychiatrist who was married to an artist friend of mine. He seemed to take an unusual interest in me, and he was always very kind toward me. After I had known him for about a year, he asked me if I would consider seeing him on a professional basis,which I agreed to. He was very distressed about my overall psychological health and soon diagnosed me as having Bi-polar disorder. He started with the usual medication routine, but he had a nagging feeling that there was a separate disorder present, but he couldn’t “put his finger on it”. He died soon after that, and I was passed from one psychiatrist to the other. None of them could see outside of the box far enough to do anything but treat me for Bi-polar disorder.

Eventually, a more curious psychiatrist could see that the medications weren’t doing me any good. He suggested ECT, more commonly known as electro-shock therapy. I received a total of about 12 of those treatments, but only received a minimal reduction in my depression, altogether.

After continued and failed medication experiments, I sought the help of a mental health therapist. We had weekly sessions and he specialized in cognitive behavioral therapy. I seemed to make some progress with the therapy and I was surprised that I finally found a practitioner who I could communicate with and trust.

After seeing him for about three months, he came to the conclusion that I might have been misdiagnosed. He thought that it was more likely that I had a developmental disorder rather that being Bi-polar. He traveled to the University of Texas to visit his son who is a professor there. While there, my therapist went to the library and researched Asperger’s disorder. He brought back a book by Tony Atwood and several other documents which he had me read. He didn’t tell me what he thought, but asked me what my opinion was after reading everything. I told him I read my life story in those documents. From that point on, I went off most of the medications which I had been taking and relied upon therapy and self education to get a handle on things. We tried “mindfulness” exercises, but after going through them, I would come to and ask the question…now what? Mindfulness was not helpful. I ground myself through being very active and inquisitive, which is probably the opposite of mindfulness. My therapist calls me a human doing, not a human being, which I find humorous.

I still wanted a more definitive diagnosis, so I interviewed three psychologists and took a battery of written tests. All of this effort confirmed the correct diagnosis of Aspergers syndrome. Therapy is a very long process. My sessions have become much less frequent, but I will always need some sort of on-going therapeutic help to overcome doubts over my capability to lead a normal life. I need a connection with a practitioner who is honest and more on the normal side of things than I am. I was fortunate to have found such a person. 

My feeling over learning my correct diagnosis has been quite a mixed bag, I’ve long realized that I’m quite different from most people. One of the psychologists who did the testing bluntly told me that most people would never understand me. How is that for encouragement!! It is good to finally understand my condition, though.

Over the years, I’ve had less need to communicate with others than most people do. Due to my reticence, my communication skill deficits aren’t always apparent. I’m quite uneasy with meeting people for the first time. I have to hang back and try to develop an understanding of the other person before I can reciprocate. I’m sure that the delay in my reciprocation has cost me many friends over the years.

Understandably, I’ve developed quite combative relationships with other medical professionals. Much of what could be considered a normal life has been taken away from me through the incompetence of several medical professionals in the past.

On a more positive note, I can now easily empathize with people who are on the fringes of society. I try to help them and be supportive whenever I can. Being randomly sociable isn’t enough for me as I need to find a substantial commonality with another person before I can comfortably communicate. Having spiritual faith has also helped in the most trying times.

In summary, I advise any person who is having doubts about their feelings and emotions and their place in the world to seek out honest, competent and caring professional help. I had no idea about Asperger’s disorder until I was 52 years old. I can’t replace all that I’ve missed out on over the years. It is now up to me to have the best understanding that I can about my condition, try to accept myself for who I am now, then forge ahead in areas that I can excel in and control.

I’m very grateful that I encountered Paul Micallef’s wonderful videos on You Tube. They can really open up our world to us in a very meaningful way.

On Not Being a Duck

Anonymous

Imagine you find yourself at a lake filled with ducks. No other people around, just you and the ducks. 

You might spend a lot of time watching the ducks, learning their mannerisms and language, trying to understand their society. They’re fascinating creatures. But it’s often hard to understand. Duck behavior is not logical; at least, not logical to you. You are not a duck. It must be perfectly logical to the ducks. 

Occasionally, some of the ducks will notice you and come up to you. They quack at you, trying to interact with you. You’ve observed them enough that you can even guess at what they want. But when you try to quack back at them, it’s terrible. You’re just not equipped to quack properly. It’s a feeble impersonation at best, and the ducks are confused and unsatisfied. You feel foolish for even trying.

You wish you could explain to the ducks that you mean no offense, it’s just that, well, you’re not a duck. But you don’t know how to tell them. And you doubt they would understand anyway.

Over time it gets better. You learn how to quack much better. Sometimes you even sound like a real duck. At least, they’re convinced enough that they seem to accept you. You think to yourself, hey, maybe I am cut out to be a duck. 

Other times, you are reminded just how much you are not a duck. They invite you to go swimming with them. You can swim, sure, or at the very least stay afloat. But you can’t swim like a duck. They paddle effortlessly around with their webbed feet. They dive gracefully, and the water simply rolls off their backs when they resurface. No amount of observing them will ever give you their abilities. 

You try to tell yourself that it’s fine. You didn’t drown, after all. And the ducks even welcome you to come swimming with them again. But you also feel ashamed and inadequate for not being able to swim like the ducks can, frustrated that you will never, ever be able to swim like the ducks can. 

And then there’s the flying. You know you can’t fly. No matter how much you watch the ducks, no matter how good you become at imitating other duck behaviors, you just physically can’t fly. 

The ducks don’t seem to understand it. They seem to think it’s a choice you’ve made. To them, you’re just that strange duck that doesn’t like to fly. You still wish you could make them understand that you’re not a duck, you’ve just become adept at certain aspects of imitating one. But maybe it’s for the best that you don’t say anything. Maybe they’d think you’re crazy. Worse, maybe they’d be angry at you for pretending this whole time. 

So instead you just say nothing and keep pretending. You’re very good at it by now. But it can still be difficult at times. There are days when your throat is sore from the quacking that still isn’t, that will never be, completely natural. You still get exhausted from so much swimming; you’ve become a strong swimmer, but you just can’t keep up with the ducks. 

When they go off flying, you try to console yourself with all the things you can do that ducks can’t. You’re far, far better at walking on land, for instance. For a moment, you even feel superior. You could outrun any duck in a footrace! But footraces don’t matter to the ducks. And, if you’re being honest with yourself, you’re not sure footraces matter to you. You really just want to fly…