Misdiagnosis, then Correct Diagnosis

aspergersfrominside Uncategorized

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.

21 thoughts on “Misdiagnosis, then Correct Diagnosis”

  2. “None of them could see outside of the box far enough to do anything but treat me for Bi-polar disorder.”

    The DSM is a book full of ‘boxes’ for mental health professionals to play Procrustes.

    Mix-and-match symptom associations are no substitute for assessing underlying causes and then actively looking for disconfirming evidence. But they are not trained to do this; they think their job is to match a patient to DSM entries and provide approved treatments.
    If doctors can’t understand the interrelation of “normal”, “healthy”, and “pathology”, how can they guide patients into better functioning?
    Why is the goal to provide treatments on the basis of statistical success rather than to improve a human’s well-being? This is why the continue failed diagnoses and failing techniques.

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    • I have been in and out of both inpatient and outpatient psychotherapy programs my entire adult life, having been given every diagnosis from major depression to paranoid schizophrenia. Currently, they call it Bipolar One, but l still think that’s off. I’ve done a LOT of research, which is how I found Aspberger’s from the Inside btw, and I began to suspect a combination of ASD as Well as ADHD inattentive type. I am not a doctor and could be wrong, but I THINK I’m onto something. I literally self-diagnosed and brought it up to my psych doctor myself. I am finally being evaluated by an autism/adhd specialist on December 22nd. If I hadn’t done the research myself, I don’t think anyone would have even thought of ASD. I agree wholeheartedly with your thoughts on the mental health system. Where are you located? Here, in West Virginia, USA, it’s overall pretty bad, at least in my extensive experience. I’ve seen patients ignored and mistreated, and no one is apparently qualified to diagnose ASD or ADHD, which seems to lead to a lot of misdiagnosises. I’m guessing this is true in your area, too? I’d love To discuss this more. I THINK I am going to try to write a book about it, if I can believe in myself enough to do it…. But i am interested in all stories and perspectives on the topic. Thanks for sharing your thoughts.

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      • Amanda: Thank you for your comments. I live near Omaha, Nebraska and it was a long and tortuous journey to learning about, then accepting the Aspergers diagnosis. It shouldn’t take people reaching middle age before an accurate diagnosis can be arrived at. I’d be interested in communicating further.

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    • I’ve been to a few different psychologists and one psychiatrist for depression in my 73 years. The person who finally made a difference was a Shaman. There are no labels with her, only kindness when she sensed my vulnerability, and compassion in providing help for what I asked for or just needed without knowing. She provided a safe place for me.

      I ended up diagnosing myself with aspergers a couple of months ago after plenty of online research about trauma, then seeing the video “Could It Be Aspergers” and following up with Paul’s videos from there. I felt a shift in myself to a feeling of having an identity.

      I’m in Canada and I’m not a fan of many mainstream doctors either. There are a few hopeful changes happening though…. One general practitioner who also practices holistically, has been helping children with autism for years through diet. His work has recently been recognized by the mainstream enough that he’s being invited to speak to other GP’s about his autism practice. Progress!

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      • I’m very glad that you found a person who could actually help you comfortably come to understand yourself. For me, it was a very long journey to finally being able to find out the truth. If it weren’t for the kind, generous, and diligent therapist who I met by chance, it is quite likely that I wouldn’t have been able to go on. Paul’s videos have been a great source of information and sound direction for me. Its really good to know about people such as yourself who have found a path that helps us toward a better understanding of who we are.

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  3. Thank you David, for your comments on my post. I agree with your thoughts, entirely. They really summarize my experience. Mental health diagnosis and care has a long way to go.

    Robert Dewaele

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  4. I agree that mental health services and treatments are still in their infancy and there are loads of people who are being treated by trawling through the present toolkit of medications without much success. The mind is such a complex thing- it must be almost impossible for another person to fully grasp how another feels. Kudos to you for persisting and finally getting some understanding.

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  5. This resonates with me: ‘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 am getting my diagnosis now at 43. My initial thought was to try to justify whether I did the best I could in the past but there is no point. This is a new beginning.

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  6. This really resonates with me: ‘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 am now getting my diagnosis at age 43. I see it as a new beginning.

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  7. A message for Robert: I got a lump in my throat when I read your words ‘I told him I read my life story in those documents’. That part of your story matches my own – I’m 44 and just discovering who I really am, as someone with Asperger’s rather than someone who is broken. I am so grateful to have this knowledge now and appreciate all the work Paul and others are doing to improve understanding. Good luck with your onward journey (oh, and your sculpture looks terrific).

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  8. Thank you for your article. It was interesting to read about where your drive towards self understanding led you psychologically. I imagine it is a similar journey when sculpting, the interaction between self and world?

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  9. My story is very similar. I suffered with depression and anxiety for years, had multiple diagnoses and treatments and attempted the holistic route (mostly dietary changes) which helped me to cope more with my life. I have never felt like I fit anywhere. I was always different. I have learned many skills to appear like I belong, but deep down inside, knew otherwise. So last year I became a you tube junky and happened across Paul’s videos and this website. After 73 years I finally knew why I was different!!! It has answered so many questions. I see now see others like me and I don’t feel so alone. I haven’t been formally diagnosed, but I don’t feel the need to do it at this point. Thank you Paul and all of you who have shared your stories.

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      • I’m a 73 year old female from Australia and have never been diagnosed. Having read many papers, and doing my own research, I’ve concluded that an ASD diagnosis is the only thing that makes sense of my entire life. At my age I will not seek a formal diagnosis, but for the first time I feel settled and a sense of self acceptance. I finally have a sense of identity.

        I thank all those who’ve had the courage to write about and publish their journey.

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      • I’m glad that my story has been a help to you. When a person is able to develop a sense of self acceptance, it is such a wonderful milestone to reach. Many of us have lived much of our lives feeling that we are on the margins and not accepted. Being able to move beyond the judgements of other people and bolstering our own self image is such a gift.

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    • Larry: I’m very glad that my story resonates with you. It is liberating to find out what the actual problem is.  It shouldn’t take people like us having to go so far through life before an accurate diagnosis can be made.I have developed empathy for others who are travelling the same road that we are. I’m glad that you have found some answers too! Robert Dewae

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  10. Thanks so much for sharing your story. Really appreciate it. I was diagnosed with bi-polar II a few months ago after ~15 years of trying to figure out what is going on with me (I’m nearly 37 now). I accepted the diagnosis but it didn’t really feel right and the medications don’t do anything for me or make things worse. I just talked to another doctor a few days ago who suggested it could be Asperger’s or similar and then I found Paul’s videos. Holy smokes, what a shocker. Now I need to figure out what to do with all this.

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  12. First of all, I absolutely love you sculpture. Very beautiful and inspiring for a fellow creator/artist. Art is one of my personal therapies.
    I can totally relate to your story. I have spent my whole 53 (nearly) years of life feeling so out of place in the world, and find that the older I get the harder it is to be so different from everyone else and not have known why all my life. It wasn’t until a couple of months ago that my therapist, who I have been seeing regularly for years for my depression, anxiety, CPTSD, and ADHD, asked if I had ever thought that I was autistic. It was such a relief to have someone else notice and confirm that niggling in the back of my mind that I had about who I am. She confirmed that ADHD didn’t quite explain it all. Even my dad has since confirmed that I am likely misdiagnosed. I have been on ADHD meds without much help with my symptoms. Of course, now I know that any reasons for being easily distracted aren’t only attentional, especially because I hyperfocus more often than lack it. I am trying to find a way to get tested without an out of pocket cost, since I am currently unemployed. Anybody with suggestions is welcome to offer help. Thank you from rural Oregon, USA

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    • Ms. Vallot: Thank you for your kind words regarding my sculpture.  You are very correct in seeing the importance of creativity, especially in our unique and complicated lives.  Currently, I teach short units of beginning sculpture to autistic students at the Munroe Meyer Institute in Omaha, Ne.  They are part of the University of Nebraska Medical Center which is also in Omaha, Ne.  Regarding your main question, If I were you,  I would look into any State, local, or regional public mental health departments to see if testing could be obtained at a reasonalble or cost free basis. You might also want to contact university medical centers in your  area to see if they might be able to identify resources that could be available to you.  We seem to have followed similar journeys. Being misdiagsosed certainly created problems for me as I outlined in the blog. It was good to find out my true diagnosis, and that has had an impact in the counselling that I have received and continue to receive.  I’d hoped for a long time that most of my issues could only be seen in the rearview mirror, but that has turned out to not always be the case. I’m finally coming to grips that ASD  (aspergers) is a life-long condition that places some complications as well as gifts in my life.  I believe one develops greater empathy for others which certainly enhances our lives and communications with those people. There are probably on-line assessments on the internet as well, which might give you a general idea about your concerns. There is an author by the name of Temple Grandin who is autistic and is a nationally known expert and advocate for people on the autism spectrum.  She has written numerous books based on her own experiences which might likely be shelved in your local library. She is a mechanical engineer by training and  but has dealtt with autism all of her life.  She is probably in her mid seventies now. I highly recommend her books. She provides a lot of insight for people who need help in coping with life. I understand your comments about hyper focus.  That issue can block out much of what is going around me at times.  I’ve been fortunate to have been able to be seen by a very caring, knowlegeable and out of the box therapist.  Had it not been for him, I’m not sure what turns my life would have taken. 

      I do hope that you will find this email helpful, and I hope that you might keep me informed of your progress in getting a better diagnosis and appropriate help  Sincerely Robert Dewaele

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