Years before I was diagnosed with Asperger's Syndrome, an autism spectrum disorder, I was in a battlefield whenever I was in a social situation that turned into an argument. From my point of view, these arguments would erupt out of nowhere, and I would have no clue why someone was furious at me. "You're supposed to (fill in the blank)!" was a popular phrase I heard during these arguments. I knew the whole time that my intent in a social situation was to make friends, not cause conflict with others or make them uncomfortable. Whenever this happened, I automatically assumed that the other person or persons just wanted to make trouble or was just plain crazy. The truth was that I was an undiagnosed adult with Asperger's Syndrome.
When I was younger, I went into battle on two fronts: home and school. For many years, I assumed that the angry people just being unfair to me. The teachers would reinforce that belief to me during that time. What was more upsetting was that my immediate family would talk to me the same way as the other students did. It didn't matter to me how many people were ganging up on me in an argument because I knew I wasn't a bad person and didn't believe I was a troublemaker. People would stick me with the label "Stubborn" because of my defiance. Was it any wonder that I would get very upset and start crying uncontrollably? Other times, I was just furious and would scream angrily.
Because of these arguments, I became very frustrated and sometimes would not talk much at all. Of course, I ended up with a new accusation that I was just being a snob to others. That wasn't true at all. It was hard to realize what was okay to talk about with others without setting them off. I began to wonder if my whole life was just a series of unending conflicts. When I told someone that I had trouble socializing, the other person would look at me as though I were insane or telling a joke. In their eyes, I did have social skills despite my efforts of telling them that the opposite was true. I recall a few would ask me why I wasn't good at socializing, and I would say that I didn't know how. Then, they would say it was easy and that I needed to practice more.
I practiced at socializing more and got a lot of grief from tons of misunderstandings that led to heated arguments. There was that cycle again. It always led up to arguments no matter what I said or did. How would I know how to react to a social situation correctly while everyone believed that I had social skills? It was a frustrating dilemma for my whole life. This dilemma wrecked havoc in my personal and career life. I couldn't get the jobs I wanted because, unbeknownst to me, social skills was a requirement even though it was never listed in the job position description.
In 1993, I met a man who couldn't read small print and told me why, though I didn't even ask him for an explanation. He said that there was a neurological imbalance in his brain that made it impossible for him to read small print despite all his efforts. Growing up in school was hard for him because the teachers and his fellow students thought that he was capable of reading the small print in his textbooks. How wrong they were!
His story made me wonder if some sort of disorder in my brain made it difficult for me to socialize with others. When I presented my hypothesis to the therapist I was seeing at the time, she debunked it and told me once again that I did indeed have the capability to socialize. She stated that I only had a disorder called Intermittent Explosive Disorder because I couldn't control my temper. I decided to listen to her advice about being around other people more would improve my social skills.
However, I started thinking again about my hypothesis that I had a disorder that prevented me from socializing when I dumped a guy was dating in 1994. The guy I had been dating was a terrible excuse of a boyfriend because he had mistreated me badly. He didn't bother to listen to anything I told him about myself. I always had to repeat the same things I told him every time I went out with him. He would promise me to drive me to some place and then turn around and not bother to show up. In January 1994, I was waiting for him in a very cold place to give me a ride and I had laryngitis. He didn't bother to leave a message on my answering machine that he wasn't able to show up. When I dumped him in November 1994, I did it over the phone. During that conversation, he blamed me for not following the rules of being a girlfriend or even being a friend. I told him that he wasn't able to communicate with me at all, and he claimed that anything I said to him meant something else to him. I told him over and over that I meant what I said to him.
I gave him an example of his ineptitude at communicating with me. In July 1994, I asked him to meet me at a movie theatre that was a few blocks away from my apartment and that he didn't have to drive me to the theatre. He agreed to meet me at the theatre, not the apartment. A few days later, I was standing in front of the movie theatre waiting for him to show up. I decided to see the movie all by myself because he never showed up. Later that day, he called me and told me he went to my apartment. He accused me of giving him the wrong message and claimed that I really wanted him to drive me to the movie theatre. It made me wonder why he left me stranded in the freezing cold six months earlier. I told him that he always ignored what I was saying to him and that his explanation was lame.
I wanted to dump him in September 1994, but he wasn't able to meet with me for more than two months. His parents decided to kick him out of their basement so he had to hunt for an apartment, and his car was constantly in the repair shop. I decided to do it over the phone when he decided to call me in November 1994. It had been more than two weeks since his last phone call.
While I was dumping him over the phone, he cried and begged me to stay with him. However, he still accused me of not following the social rules of communicating. I yelled at him reminding him that I got a college degree from Emerson College, a communications college. Then, I started thinking about the possibility of me having a disorder at that point of that conversation.
For years after I ended that relationship, I still had difficulty in relationships with everybody and still wondered if I had a mental disorder that made it difficult for me. I stopped seeing my therapist in 2000 after I quit the job that I hated being stuck in for many years. I had been seeing her since 1989 when she misdiagnosed me with having Intermittent Explosive Disorder and prescribed Lithium to me because I had been losing my temper that my awful job. All the things she advised me on never helped me at all. I was very frustrated.
Almost two years later, a career counselor suggested that I start seeing a doctor again in order to help me find a full time job. I had been doing temp jobs since leaving my old job and was at my wit's end about why I wasn't able to find full time employment again. While searching the Internet, I came across a treatment for people with Intermittent Explosive Disorder called Neuro-Therapy (biofeedback treatment). After locating a doctor who specialized in this, I went to her and told her about that my Intermittent Explosive Disorder ruined my capability for socializing. I described to her my problems with socializing.
After she did a Brain Map (similar to an EEG), she noticed that my brain waves were identical to her Asperger's Syndrome patients. She told about Asperger's Syndrome, a form of autism. When I went to another doctor for testing, I got an official diagnosis of having both Asperger's Syndrome and Nonverbal Learning Disorder (a disorder that makes it difficult to read facial expressions and body language) in 2002.
It was easy for me to imagine how that man who was unable to read small print felt when he got his diagnosis. I felt better and was no longer plagued with that burning frustration in my soul.
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by
Yvonne Christian (Uncommon Bostonian)
Member since:
December 14, 2005 How Tough It Was For Me Before I Was Diagnosed with Asperger's Syndrome
January 28, 2007 08:05 PM EST
(Updated: February 11, 2007 08:54 PM EST)
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comments: 36
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Comments: 36
Identifying with your plight you might wish to read my article on Learning to Tolerate My Own Frustration. It is found on my web site gibbsonline. com under the theories tab. Good luck to you.
I find it interesting that your mother is in denial, even though you were diagnosed as an adult. I have faced similar situations with parents when suggesting that they have their (four-year-old) children evaluated. The one I remember most was in complete denial and pulled her child out of the preschool program. A year or two later, someone was able to get through to her somehow and after her son was diagnosed she became a huge advocate for Asperger's awareness. Hopefully your mom will work her way through her anger and denial towards acceptance and understanding.
http://www.gather.com/viewArticle.jsp?articleId=281474976891939
"I find it interesting that your mother is in denial, even though you were diagnosed as an adult...Hopefully your mom will work her way through her anger and denial towards acceptance and understanding."
My mother is very stubborn and tough. She always sticks to her beliefs no matter what. Fortunately, I inherited that from her and that helped me find the right diagnosis for myself after years of difficulty.
I never heard of Intermitten Explosive Disorder before and will have to research that one just to know more about it. I got today the book - all cats have aspergers syndrome - have you seen this one? It is really good for kids to learn more about AS. The author has a few mysteries for tweens about AS as well, but some of the reviews on amazon made note of the australian slang was a bit confusing, but I am going to get them anyway for my son.
IED (Intermitten Explosive Disorder) is a impulse disorder. Uncontrollable rage. When I was diagnosed with Asperger's Syndrome, I didn't fit the IED diagnosis at all. My previous doctor assumed that was happening to me because it was 1989 and she was using the DSM-III. Asperger's appears in the DSM-IV, which came out in 1994. I only wish my previous doctor had learned about Asperger's when the DSM-IV came out.
Joe T. wrote: " So, is Asperger's more of a communication disorder or an emotional disorder?"
It's both actually. My brain is wired differently so a lot of things are different for me. I can't see things figuratively, just literally. My five senses (taste, see, hear, touch, and smell) are different. My emotions were out of control when I was younger because of sensory overloads, stress, depression and anxiety.
Carol Lloyd wrote: "Thank you for sharing this."
You're welcome.
After the diagnosis, I feel less frustrated because I now understand why I had so many misunderstandings in the past. I meet with a support group that are made up of other adults with Asperger's Syndrome at the office of the Asperger Association of New England in Watertown, MA. I've been with that group for more than three years. It feels great to be part of a community.
There are so many books out there about Asperger's that I haven't had the chance to read them all, but I have read Beyond the Wall by Stephen Shore and Pretending to be Normal by Liane Holliday Willey. I highly recommend those two books.
I saw your other article about looking for a job and really appreciate that you share so much of your life through writing and art. You are a truly a gifted artist. I hope you post more of your artwork. I think you are fabulous and hope you find a suitable job soon. Thanks again.
Imagine that you wanted to speak to a blind Japanese tourist but didn't know any Japanese. Imagine that the tourist had never learned English, but had a Braille English-to-Japanese dictionary. You could talk to him as long as you didn't rely on gestures or facial expressions, but it would take a while for him to "translate" your words, and he'd only get the LITERAL translation of EACH word, not the idioms or implications that would be obvious to most Americans. That's what it's like talking to an autistic person. It's very difficult for the speaker, and both parties get frustrated in short order. This is why autistic kids (and adults) have so many "meltdowns" (or Intermittent Explosive moments?); they are rarely spoken to in a language they really understand, and even when they make an effort to understand, all their hard work often comes to nothing but another misunderstanding, another angry person, another accusation that they're being stubborn or stupid. . .
Despite this problem, I'm still thrilled to be married to Ian. He's sweet, ethical, honest, brilliant, and hilarious (many autistic people develop special skills because they are able to "hyperfocus" on their interests, and Ian was interested in comedy, so he learned everything about it. His first novel, Spindle, is an award-winning comedy science fiction novel that is in development as a television show in Australia. Search for "Spindle Ian Taylor" on Amazon to read an excerpt or reviews.) I think it's hard for people to imagine that someone with such an extreme talent for something most of us would consider hard could have trouble with something as "easy" as conversation, but that's just it -- what's easy for one person may be hard for another. I'm sure gymnasts think it's easy to do a backflip, but I wouldn't even dare try (my balance hasn't been good since my 2003 brain surgery, and I'd no doubt fall and get hurt.) Similarly, I love to talk to people, even strangers, about pretty much anything, but for Ian, any situation where he's expected to "make small talk" is, as he put it, "torture." This, and an inherent distrust of authority, are the reasons why Ian's held about a dozen jobs in the nearly ten years we've been married. Yvonne, you're not alone in having "career difficulties;" it's pretty much common for folks on the autism spectrum. After all, how can you anticipate and fill the needs of a boss who doesn't speak your language? It's similar to the problem in relationships.
I hope that as the incidence of autism has risen, people will become more understanding of what Ian and Elise (and Tanya's and Beverly's sons) are going through as they try to live in a world that is just not the right fit for them. I think that's why Ian writes science fiction: there, he can create worlds of his own.
One more thing I feel compelled to mention: Impulsivity is another big problem for people on the spectrum. Ian tells me that he's constantly barraged by impulsive thoughts, many of them violent (a combination of his autism and having grown up in Australia, perhaps?), and that once he realized, as a teenager, that acting upon those impulses would cause trouble for him, he had to consciously stop himself from acting on them. This was a herculean task for him (it's hard to argue with your own brain), but he managed it, and in the ten years we've been together, he's never been involved in a violent encounter, so he's still managing his impulsivity well. But it was much harder when he was young, so I don't think we can expect autistic boys to just do as they're told all the time. They need lots of help to understand why the rules are the rules and what the consequences could be if they break them. I've heard that ABA (Applied Behavioral Analysis) is helpful, but I don't know how hard it is to find that sort of resource or how expensive it is. Autistic children are often eligible for SSI, so talk to your local Social Security office; the extra money could be enough to cover services that will help your child get through the toughest times.
Another problem that autistic people often have is called "Sensory Integration Dysfunction," which simply means that their brain doesn't process sensory information in a typical way. An ASD child might react negatively to seeing a certain color or hearing a particular sound that "normal" peple aren't generally bothered by. (Elise used to wet herself at preschool, even though she was potty-trained and did fine at home; it turned out that the fan on the bathroom light at preschool made a white-noise sound that bothered her much more than the feeling of wet pants. "I can't go in there," she tearfully explained. "I don't like the noisy light." Arrangements were made to let her use another bathroom in the school, and the accidents stopped. She's now a bright 3rd grader who will use any bathroom, but she doesn't like being around white noise to this day, so I don't send her to the laundry room if the dryer's running.)
Many spectrum kids hate wearing wool or any other "scratchy" material, because they're simply more sensitive to that feeling than most of us are. To a parent, it can seem like they're just being a pain in the neck, especially if the school bus is beeping and we have only seconds to do what we know is expected of US. But the kid can't understand the pressure we're feeling, because autism is, at its root, an inability to see things from another person's perspective, a skill which comes naturally to most of us, but like Yvonne's acquaintance who couldn't read fine print, spectrum people are simply neurologically inequipped for the task of imagining themselves in a situation they're not in and imagining what their feelings and reactions would be. (I've written a children's book on this topic as part of a series for autistic kids; I'll certainly let Gatherers know when/if any are published.)
Karen
www.spindlebook.com <--Ian's amazingly hilarious award-winning novel!
Let me invite you to a new internet forum, ASD Writers, a new internet forum site I created about a month ago, where members may participate in discussions about various autism spectrum disorders and related disorders (and the issues and concerns surrounding them), share their writing and other creative accomplishments (poetry, music, art), and engage in fun text-based roleplay (graphical sex or other adult material never allowed). The site is geared towards two audiences: those who are on the autistic spectrum or have a related disorder, and those who either know someone on the spectrum or simply want to learn more while having fun.
Sorry it's taken me so long to respond to your comment. I don't visit Gather as much as I used to. I've been busy with a lot of things and it's been a bit overwhelming.
Thanks for the invite to your forum. I have it bookmarked on my computer and will check it out soon.
Yvonne
It's unfortunate that so few of the "professionals" are open-minded and intentional. We feel very blessed to have been referred to a psychologist (PhD) who did some independent testing and then read all the past test results and was able to put the pieces together for us.
I'm going to forward your article to my husband and son. This is great encouragement. Thank you.