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…

Young Autistic Malaysian Author – Andi Miranti

I recently had the privilege of meeting a young autistic malaysian author by the name of Andi Miranti at the Asia Pacific Autism Conference in Singapore, where he was proudly selling his wares to an international audience. Andi kindly agreed to an interview (which you can watch here on YouTube) and has also written some additional information about the story behind his books below.

Andi-Thmb2-text.JPGClick here to watch on YouTube

ANDI MIRANTI and his NED DICKENS BOOK SERIES

Hello my name is Andi Miranti. I’m the writer and illustrator of the Ned Dickens book series. I live in Petaling Jaya, Selangor, Malaysia with my brother and parents. I also have autism.

The Books
The Ned Dickens book series is about a boy named Ned Dickens. He’s a nice guy, but he often ends up in trouble with harsh punishments from his dad and pranks from the neighborhood bully. He also has a brother who goes to Nerf tournaments with his Nerf team.

In the first book, Ned wants to raise enough money for a 10-year membership for this game called RuneScape. But things keep getting in his way.

In the second book, Ned has his own time machine, and intends to use it to go back to the past and make fun of historical figures. One time, he accidentally ended up in the future, where he meets some interesting characters to help him save the future.

Origins
It all started when I was about 12 or 13, when my brother and I were experimenting with my name because it sounds like the initial “N.D.” Then my brother thought of the name Ned Dickens and we started developing a character out of that name. He gave me a few starting ideas for Ned’s personality and what Ned can do (including the blue smashing, the time
teleporting, and what he looks like). After that, most of my ideas are my own.

I first made a short Ned Dickens story for Readers Digest, but it didn’t make it in. I later started drawing Ned Dickens as a just-for-fun comic strip, like the ones from newspapers.

When I was 14 and initially working on my first book, I was only doing it as a small hobby, and I gave up and lost interest in the middle of chapter 6. Then a year later, my mom found out about the Art for Grabs festival and wanted me to publish my book for that festival. After some hesitation, I published the first six chapters as Part 1. I continued working on my Ned
Dickens book in 2 more separately-published parts over the next 2 years. Hence the three parts of Book 1. Nowadays, these 3 parts are only available as Book 1 Full Version, which combines all 3 parts initially published in 2014, 2015, and 2016.

Progression
In the book series, most characters are male, but as the book series continues, I start introducing more female characters. Another thing is, my handwriting and drawing have improved over the years and over the course of the books. It’s because my muscle tone and
control are better than before.

I’m currently writing the 3 rd story in the Ned Dickens series. Here are a few hints: China, and Ned’s long-lost mother. We might publish it in early 2020 at the earliest.

Future
After I finish the third story, I plan on making an activity book followed by a spin-off story involving a couple of background characters from one of the books (I’m not revealing which characters!).

After that, I will focus on completing my IGCSE and other life skills that would help me begin living an independent adult life. I haven’t decided what my full-time career will be. I’ll either continue my cartooning career by writing an entirely new story and/or another Ned Dickens book, or become a keytar player in a metal band. Yeah, heavy metal music is another one of my interests.

There are lots of different possible outcomes of my Ned Dickens career, but you never know what the future will bring.

THE END (or the continuation)

By Andi Miranti
FB: Ned Dickens – Original Comic Character by Andi Miranti
Instagram: andi_miranti_ned
E-mail: neddickens99@gmail.com

Diagnosis Story 23: People need kindness and gentleness – not just labels

Today’s story comes from Gabriela in Romania. Hers is not a sad story. Despite only recently discovering she’s on the spectrum she has always felt supported and accepted.

I played sports, joined clubs, went to parties and concerts, was part of groups, had an active social life, I traveled the world and experienced its positive vibes. I had a few quirks and sensitivities, but no one seemed to mind.

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This picture is about the inner world, which is much richer than the outside one, about dreaming with your eyes open and seeing portals to so many worlds.

Gabriela’s Story:

My path has been a game, adventure mode on, self-exploratory to the core.

The first level started with a loving family, and a friendly accepting community, who took me as a whole. I was not bullied as a child, marginalized, nor excluded. I played sports, joined clubs, went to parties and concerts, was part of groups, had an active social life, I traveled the world and experienced its positive vibes. I had a few quirks and sensitivities, but no one seemed to mind. I grew quite independent, self-confident, and curious about humanity.

I’m 35 and am now working in IT. That said, I recently found out I’m on the spectrum. It happened by chance, not by intent, and I’m still figuring out things slowly, fragmenting to a billion thoughts.

I was researching for a friend whose niece is on the spectrum, and while watching videos of Aspie school girls, a lot of it seemed to hit home: what they’d said, attitude, motivation, gestures, their approach to things, thoughts structure. So much of that resembled my own at that age. Naturally, I did what any sensible rational adult would do in this day and age: youtubed & googled.

I began reading in depth about girls on the spectrum. I went over professional papers and personal stories. I took tests, made lists, and ended up with some sort of a user manual of myself, which, for those who would like to try it, is an exhausting, fun and revealing exercise.

I felt abundantly ignorant for not knowing how much the topic had expanded, and amazed by how diverse it all is. There’s a lot on classical autism – less applicable for me; and another lot of applicable info which I struggled with due to being presented too broadly. On top of that, psychology papers seem to be written by people who observed from an external standpoint, without having a genuine inside understanding of the situation. For me that made it confusing, abstract and distant.

What helped clarify were the testimonials of people on the Spectrum. They seemed to put into words exactly how I was processing things, what and how I felt, sometimes using the same words or phrases, and they even knew weird I experienced, that no one else knew about. They also normalized the frustrations, other people’s denial, the confusion, the stunning moment of confirmation, the relief. They got it. They made sense. They were there.

Going now over memories and facts – it seems so obvious and clear, scattering any sign of doubt. I thought whether to get an official diagnostic, and what that would bring to my life, both positive and negative. Being a grown up, who’s made it so far in a bizarro world, with learning how to function sort of well in it, I decided to not go for the extra validation. Speaking strictly for me, I don’t feel a formal diagnosis would add value to my life or help in any way. I understand though people who go for it, either for pragmatic reasons, for wanting to stop the “how can you be on the spectrum?” frustration, or simply for getting an answer to a continuous thought. And I do encourage people to do what they feel it’s best for them.

I really don’t know whether finding out about it from an early age would have made a difference. I felt accepted and supported, without thinking there’s something wrong with me. I took pride in my cool features and regarded them as strengths.

I learnt what works for me, what doesn’t, communicational & emotional skills, and coping techniques. I don’t know if it took longer or if it would have taken this long anyway. For me it was more of a self-discovery process of trying out things versus being guided by a professional.

I am immensely grateful and thankful to everyone who created and shared content about this online.

For a while, I went with being bipolar, which gave a base, yet left some things unexplained. Being on the spectrum makes sense altogether. It feels as if for the 1st time ever all the pieces of the puzzle fit where they are meant to. Understanding it eased up my daily efforts on dealing with emotions or processes that were sort of outside of my control, yet I was still attempting to manage tightly, such as: anxiety, that feeling of standing out, the automatic mimicry, super productivity rush followed by super crush etc. It came with a subtle sense of relief and appreciation, looking back at all the hard work done on acquiring those skills/methods/techniques. Overall, it brought extra steps towards understanding myself, and extra love towards my family and friends.

Discovering the community around this has felt soothing, comforting, and connecting, all to a level I was not expecting. I still address people as “humans” and find them to be curiously strange creatures with strange habits. I still feel very much like a being from another planet, dropped on Earth, continuously needing to upgrade my skill pack to function, using a different operating system than others around. But at least now I know there’s more of us. Small army. And that’s a very nice feeling. J

I watched most of Paul’s videos and smiled widely each time he described spot on coherently how I function, without me having to strive to explain any of it, as if having a spy camera inside my mind. Amazing. Stunningly amazing. I relate to his videos to such a high extent in regards to inner processes/thoughts/sensations/the very core structure of my being.

It’s been a long adventurous path, yet I’m a newbie at the spectrum thing. I’m still thinking things over, not knowing for sure how I should relate to them or how this would evolve in a few years. I don’t see this as a disorder and I find approaching it in this way bizarre, rude, similar to the world’s unkindness, not sustainable and perhaps damaging on the long term. Everyone has strong points, and things to work on, no matter if they’re on the spectrum or not. I don’t see being on the spectrum a disability. I see it as a pack of features. Quite cool amazing features, to be honest.

Maybe I could do with less of extra-sensitivity to meanness, and definitely I could do with less of the anxiety, but I guess it’s a whole package deal.

People come in different shapes, colours, features – some of those shapes/colours/features have names, others don’t. It just so happens that this one has a name – a beautifully coloured, delicately textured, softly shivering, musical name, because I’m synesthetic and that’s how I perceive it. Maybe it’s me being new at this, but I think people need kindness, love and gentleness more than they need labels.

I don’t mind being weird. I quite like it, and I would not trade off my inner world and sensations. I am more than a name, a diagnostic, a perspective of describing myself; there are angles and layers, tones and shades, a solid self-transforming universe, quietly waiting for people to broaden their eyes and hearts and connect.

Thanks for being kind and supportive,

And thanks for reading through.

p.s.:

I added a few links for women out there who are confused about this.

I’m sorry you have to go through this. It is going to get better. #sendingyousoothingvibes

Diagnosis Story 22: It Seems Obvious Now

This week’s story comes from Kate, a young woman in the U.K. who loves living in London. One day you might see her name in the credits of a documentary!

I am so grateful for the diagnosis. It has given me so much clarity and I am now able to look back and forgive myself for my perceived shortcomings.

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I now can truly appreciate that I am not less capable, I just have different capabilities.

Kate’s Story:

My name is Kate and I am 23 years old. I am Scottish born and bred but moved Continue reading

Diagnosis Story 21: Rubbish at Pretending

Today’s story comes from Anna in Eastern Europe. She thought that everyone struggled with what she found difficult until a trip abroad provided evidence she couldn’t ignore.

 

“I did what any self-respecting adult would have done: went online and did a bunch of tests… I concluded that the tests were rigged and the Swedes were strange.”

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I usually think of people in animal terms, which makes it easier to recognize and remember them. I’ve always identified with sparrows. This one is from my time in Sweden.

Anna’s Story:

I was a miserable kid, constantly misunderstood, chastised, and even publicly Continue reading

Diagnosis Story 20: Me & My Twin Brother

Today’s story is from 29 year old Allison in the U.S.

“We ended up going to gifted schools, him for academics, me for art… I am so thankful I now have an explanation for how we did, and still do struggle.”

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Me and my twin brother – soon after we were born

Allison’s Story:

I’m a woman who has ASD. My whole life I was considered Continue reading