Asperger's Syndrome: Frustration and Strength
Category: Blogging

Have you ever felt such frustration in your body you felt like the apocalypse was going on inside you? Have you then taken a deep breath, put a smile upon your face and appeared as calm as possible, so that no one would know? Has the "emotional volume" in you been turned up so loud that you cannot hear people talking to you, and yet you pretend to understand?

I have a good friend who also has Asperger's Syndrome. She usually appears fairly rigid and controlled. She shared with me that she has a ritual involving hidden body movements in which she tenses certain parts of her body in sequence, so that no one can tell how stresed out she is.

We are both in our 30's. When women with Asperger's reach their mid to late 30's, we have developed so many compensations for our disability that it can rarely be detected. As children, we had the usual autistic meltdowns, which of course, our parents attributed to bad behavior. Professionals were biased towards diagnosing little boys and they did not diagnose girls as often.

Still, we were diagnosed later in adulthood with autism, from our developmental history. As teenagers and young adults, we were very slow to mature emotionally, still having occasional emotional meltdowns. These were often labeled "histrionic," when in fact they were the result of pure sensory and/or emotional overload.

A decade ago, I developed a technique to stop cuttting myself that involved imagining scratching my nails down a curtain, to release frustration. It worked, and up until a year ago, I would either use that visualization or the visualization of banging down a wall with a hammer. I haven't used self mutilation in over a decade now. Self mutilation is often linked to past trauma or borderline personality disorder, when in fact, it is a common aspect of autism as well.

Living with Asperger's Syndrome is often extremely frustrating. What is going on around me? When should I talk? What is appropriate to talk about? What do I do when more than one person is talking to me and I cannot focus on more than one at once very easily? Are people mad at me? Why? Why can other people tolerate bright noises and lights when I cannot? Why am I exhausted and need to go straight to bed after every job I ever work? What's wrong with me?

Adding to the frustration is family members who have excessively high expectations. They want us to achieve and they want us to do it "yesterday!" Of course, this only adds to our high level of frustration with ourselves. Our disability is essentially "invisible," especially the older we get. We have incredible strengths that "neurotypicals" (those without autism) do not. Neurotypicals do not have the same sort of drive and intense focus that we have. They are not able to tie unrelated things together to create innovative solutions the way we can. They cannot entertain themselves alone as well as we can.

However, we have difficulty with working in groups and understanding the underlying social framework of work and social environments. Daily life among others becomes an exhausting challenge, while when left to ourselves, we can be quite productive. The best way to cope with Asperger's Syndrome is to focus on strengths, rather than weaknesses, and to realize that we always have choices about how to take care of ourselves under stress. Learning sensory regulation and emotional modulation also goes a long way.

If you or someone you care about is having issues dealing with frustration in daily living, I hope you will take a look at my book and my video at http://www.laurapaxton.com/borderline.html

12:00 AM - 3 Comments - 6 Kudos - Add Comment

Is Borderline Personality a Developmental Disorder?

Could borderline personality disorder be only one facet of developmental disorder? Recent research studies back this theory up!

Long thought of as a trauma-based disorder, recent studies have shown that only about 20% of those diagnosed with borderline personality disorder (BPD) actually have experienced a major physical, sexual or psychological trauma in their past.

The next major theory was that BPD was a mood disorder. Studies by Akisal, M.D., originally bore out this theory through showing that 80% of those diagnosed with BPD had traits of bipolar type II. Bipolar II is like "bipolar light." It is comprised of many major depressive episodes, with only very light mania.

Even only one episode of "soft" mania (also called hypomania,) can qualify a person for the BPD II diagnosis. A major study in the summer of last year showed that only 35-40% of those diagnosed with BPD met the criteria for a mood disorder, however!

If the basis of borderline personality disorder is NOT trauma and it is NOT mood for everyone, what could the basis actually be? An Australian study by Leanne Sidis in the fall of last year showed a remarkable thing. Her famous "gamma study," showed a similar breakdown in the frontal and posterior brain networks of those diagnosed with BPD. This breakdown is similar to that seen in people with ADD and with autism.

Because of this major study, I began to investigate other similarities and differences between BPD and autism. After all, people (usually women!) diagnosed with BPD usually appear childlike or younger than they are. They are well-known for their immature emotionality and mood swings. Also, "black and white thinking," is considered a hallmark of the disorder, but this type of thinking is also common with developmental disabilities, such as autism.

The biggest supposed "hallmark" of BPD is "no sense of self," "a sense of emptiness," or a "search for identity." These traits are also found in schizophrenia, autism, and many other disorders. They are NOT unique to BPD.

I began to wonder whether the current diagnostic process for autism is biased towards men. After all, 3 boys to one girl are typically diagnosed with autism. This used to be the same ratio of children diagnosed with ADD. Recent research has shown that the ratio is actually 1:1, but that no one had a clear picture of what ADD in girls looked like. Similarly, view have a clear picture of what women with autism look like.

Through my year-long process of synthesizing over 125 research articles about BPD and autism, and the overlaps between, the conclusion I came to was that what is often labeled as"BPD," is actually a developmental disability. Please review the chart below, and come to your own conclusions!

(Please note: ALL of this material is also included in my new book: Borderline and Beyond, 2007 Edition, Applies to BPD/ASD.)

Surprisingly, the techniques used to help those with BPD also seem to work to help those adults suffering from ADD, High Functioning Autism, both Kanner's and Asperger's types. The book is full of techniques to cope with developmental delay, emotional overload and social difficulties. All apply to both types of disorders.

I'd love to read your thoughts on the chart below!

Laura, Adult with Asperger's Syndrome, right hemisphere dysfunction, Nonverbal Learning Disability, ADD, Sensory Integration Disorder, recurrent shingles

COMPARE/CONTRAST 

 TRAIT         

 BPD/ASD 

Emotional  

Yes/ Yes

Yes/Yes

Often relate well to animals and children 

Yes/Yes

Prone to Regression Under Stress           

Yes/Yes

Areas of the Limbic System Limbic System
Brain Most  Relevant:

Amygdala  Reduced                     Yes, 16%                          Yes
Hippocampus Reduced                Yes, 7.5% smaller              Yes

 Pre-Frontal Cortex Abnormalities:

BPD:   amygdala abnormalities in pre-frontal cortex. Low
level brain activity and deficiency of serotonin in pre-
frontal cortex. Reduction in frontal and orbito-frontal
lobe volumes.Neuropsychological testing implied a
dysfunction in the right hemisphere frontotemporal
region in BPD individuals. There was a significant 24%
reduction of the left orbitofrontal and a 26% reduction of the
right anterior cingulate gyrus 

Autism Spectrum Disorders: Strong evidence supporting one of
the major theories of autism, known as the limbic system
theory, which suggests that damage to the amygdala and the
frontal cortex contributes highly to what appears to be the
primary symptom of autism, social impairment.

Sources:

  M. Driessen, J. Herrmann, et al., "Magnetic resonance
imaging volumes of the hypocampus and the amygdala in
women with borderline personality disorder and early
traumatization," Archives of General Psychiatry 57, no. 12
(2002): 1115-1122.131. 
  EH Aylward, NJ Minshew, G Goldstein, NA Honeycutt, AM
Augustine, KO Yates, et al., "MRI volumes of amygdala and
hippocampus in non-mentally retarded autistic adolescents and
adults," Neurology 1999; 53: 2145–50. 
 DC Rojas, JA Smith, TL Benkers, SL Camou, ML Reite, SJ
Rogers. "Hippocampus and amygdala volumes in parents of
children with autistic disorder," Am J Psychiatry. 2004
Nov;161(11):2038-44. 
 C Schmall, "Frontolimbic brain abnormalities in patients
with borderline personality disorder: a volumetric magnetic
resonance imaging study," Biol Psychiatry 2003 Jul
15;54(2):163-71. 
 M. Driessen, J. Herrmann, et al., "Magnetic resonance
imaging volumes of the hypocampus and the amygdala in
women with borderline personality disorder and early
traumatization," Archives of General Psychiatry 57, no. 12
(2002): 1115-1122.131. 
 Arch Gen Psychiatry 2000 Dec (from Germany).
"Magnetic resonance imaging volumes of the hippocampus and
the amygdala in women with borderline personality disorder and
early traumatization." 
 Biol Psychiatry 2003 Dec 1;54(11):1284-93 (Yale
University) "Amygdala hyperreactivity in borderline personality
disorder: implications for emotional dysregulation." 
 Biol Psychiatry 2001 Aug (from Germany)
"Evidence of abnormal amygdala functioning in borderline
personality disorder: a functional MRI study." 
 DC Rojas, JA Smith, TL Benkers, SL Camou, ML Reite, SJ
Rogers. Hippocampus and amygdala volumes in parents of
children with autistic disorder. Am J Psychiatry. (2004)
Nov;161(11):2038-44. 
 EH Aylward, NJ Minshew, G Goldstein, NA Honeycutt, AM
Augustine, KO Yates, et al., "MRI volumes of amygdala and
hippocampus in non-mentally retarded autistic adolescents and
adults," Neurology 1999; 53: 2145–50.                                                                                      

 Jeffrey Munson; Geraldine Dawson; Robert Abbott; Susan
Faja; Sara Jane Webb; Seth D. Friedman; Dennis Shaw; Alan
Artru; Stephen R. Dager, Arch Gen Psychiatry. 2006;63:686-
693. 

 P.H Soloff., C.C Meltzer, P.J Greer, et al., "A Fenfluramine-
activated FD8-PET study of borderline personality disorder,"
Biological Psychiatry 47 (2000): 540. 
 IK Lyoo, MH Han, DY Cho, "A brain MRI study in subjects
with borderline personality disorder," J Affect Disord 1998; 50:
235–43. 
L Tebartz van Elst, B Hesslinger, T Thiel, et al.,
"Frontolimbic brain abnormalities in patients with borderline
personality disorder: a volumetric magnetic resonance imaging
study," Biol Psychiatry 2003; 54: 163–71. 
 Prog Neuropsychopharmacol Biol Psychiatry 2004
Mar;28(2):329-41."Neurocognitive function in BPD. 
 Ludger Tebartz van Elst, Bernd Hesslinger, Thorsten Thiel,
Emanuel Geiger, Kerstin Haegele, Louis Lemieux, Klaus Lieb,
Martin Bohus, Jürgen Hennig and Dieter Ebert, "Frontolimbic
brain abnormalities in patients with borderline personality
disorder: a volumetric magnetic resonance imaging study,"
Biological Psychiatry,Volume 54, Issue 2 , 15 July 2003, pages
163-171. 
 Elizabeth N. Bartmess-LeVasseur and Kathryn Loveland.
Multimedia Textbook in Behavioral Neuroscience. Rice
University.

1:15 PM - 12 Comments - 8 Kudos - Add Comment

Raising a Child with Autism Is a Difficult Job
Current mood: grateful

Raising a Child with Autism Is a Difficult Job

Most parents are dedicated to the development of their children, and wish for nothing more than their best possible success. My own parents could not have been more dedicated. My father worked two jobs to send me to an exclusive private school. My mother, who probably had undiagnosed Asperger's Syndrome (AS), endured an intense amount of stress, raising me and my brother.

When parents today have a child with either Kanner's or Asperger's type autism, they learn this pretty quickly from their doctor or the school system. My parents did not know what they had gotten themselves into. All they knew was that it was very hard.

(Note: Kanner's autism is usually applied to children with an IQ below 100 with delayed speech. Asperger's autism is usually applied to those with IQ's from the normal to genius range, often with early speech.)

In the late 60's when I was born, Asperger's Syndrome was simply an informal term used by medical professionals. It did not officially "hit the books" of the official diagnostic manuals until 1995. So, my parents had no idea they were raising an autistic child. All my parents knew is that they had a very tough job.

My father says that I was a difficult child to raise. Raising me was much harder than raising my brother. Because there was no diagnostic label to help my parents understand me, all they believed was that I had behavioral and emotional problems. The truth was that I had a lot of difficulty understanding when and why my parents were angry, and what I may have done to contribute to that. This is one reason why no method of discipline was ever effective with me.

This blog is in honor of both of my parents. It is an Easter present for my father, because I want him to know how much I appreciate all he has done for me. My mother passed away on April 5, 2002 and she was buried on April 9. Ironically, April 9 was my mother's birthday as well. April 9 (tomorrow,) is always painful for me and my family, even though five years have passed since that time.

I have a collector's edition beanie baby that was "born" on my birthday and the year of my mother's death. When I remember my mother, sometimes I snuggle with that toy. I also have a scarab bracelet that was my mother's. My very first memory of my mother was that bracelet. Sometimes, I kiss it for good luck.

I had no idea what my parents were going through. Children are naturally self-centered, but an autistic child can be self-centered to an extreme. It is difficult for us to understand the perspectives of other people, even as adults. Today, I remember to step back and contemplate the perspectives of others, to ask questions and to seek to enter their world, rather than just mine. A "perspective taking" group offered by my local branch of the Autism Society has helped me a lot with that as well.

I cannot tolerate being around people for very long. I like them, but they begin to overwhelm me. Through my childhood years, I yearned to feel close to my parents, yet did not know how. Only now, as an adult, do I have the ability to feel very closely bonded to my father. There have been many years when my father made great sacrifices for me. He has financially supported me during the years when I could not write and sell books.

During my working career, I could not handle the stress of any job for less than a year and a half. I would come home and immediately go to sleep afterwards. Migraines were a constant daily affair, also. Finally, I recognized that I could not continue working if it was going to take such a toll on my body. It was simply no way to live.

My parents dealt with a child who was intensely and unpredictably emotional. They never knew when or why I would meltdown with anger or tears. They did not understand why I could not remember who my classmates were and why I would not look people in the eye.

Equally baffling was the number of detention slips I received for losing my notebooks, pencils, pens and other school supplies. "Unprepared for class" was continually brought home on embarassing slips of paper. I still have difficulty keeping materials together and staying prepared for life. I have severe attention deficit disorder, along with AS. ADD itself has been overlooked in girls until only recently!

While it was difficult for me to go through life unable to meet the expectations of others, it was equally difficult for my parents to try everything possible to help me without success. They would see my agony in not being able to make friends, yet have no suggestions other than "ignore the kids that bother you."

The denial my parents had was pretty massive. They both believed I was brilliant because I was speaking in complete sentences at 13 months and reading and writing at 3. No one knew back then that this is referred to in the medical lexicon as "hyperlexia," and that this is a common feature of Asperger's Syndrome. No, I was brilliant to them, and the expectation they had because of that was that I would succeed in all areas of life. Although I do have a high IQ, success has not always been within my grasp.

However, in so many aspects of my life, I fell flat on my face, over and over again. I was like a child spending 38 years learning to walk, not being able to do it, yet still attempting it. It took quite a while for me to learn a different way to walk. The way I walk is not the overworn cliché of "marching to a different drummer." The way I walk through life is through marching to music few people can hear or understand.

It has been said that a Kanner's autistic lives in his own world, while an Asperger's autistic creates his own way in life, because he has to. We are unable to see the "invisible" social framework that others take for granted. Finding one's way through such a morass of confusion isn't easy. However, I have found my way as a writer and researcher.

Raising a child like me is continually baffling and perplexing. I totally respect and I'm amazed by my parents' ability to raise an autistic child, during a time that no one knew what Asperger's type autism looked like. I believe that when each child is born, God bestows a "package" of gifts upon them, which is EQUAL for each child. Although we may be handicapped in some areas, we bring joy and pleasure to our parents in other ways.

Daddy, I hope that I have brought you happiness and that you are proud of me. Writing this blog has been helpful for me, to step into my parents' shoes and to try on their perspectives. Happy Easter, Daddy. I love you and you are the most precious part of my life.

Love,

Laura

7:16 AM - 8 Comments - 14 Kudos - Add Comment

Expanded 2007 Edition of Borderline and Beyond!
Current mood: cheerful
Category: Life

Expanded 2007 Edition

of Borderline and Beyond!

After over a year working with research and re-integration of the new information I discovered, I have finally been able to release my new book and workbook program set this month!

So many women are misdiagnosed as having borderline personality disorder, when they are more likely to have a mood disorder, a trauma spectrum disorder, an autistic spectrum disorder, or a combination of two or more!

In the Expanded 2007 Edition of Borderline and Beyond, I describe the types as: Alpha (mood/affect only,) Beta (Trauma-Based Disorder,) Gamma (Autism  Spectrum Disorder) and Delta (a combination of the above.) Controversy persists among professionals about whether I am a Gamma or a Delta. This is quite easy to understand. People with autism spectrum disorders are extremely "labile," meaning that their emotions can change quickly and without warning. This sort of behavior may mimic bipolar rapid-cycling or other psychiatric conditions. However, they are usually not.

As I've mentioned in other blogs, when parents are informed that their young children have an autism spectrum disorder, their grief is profound. Already, parents begin imagining all of the missed opportunities their children are "bound to have." However, with more improved programs and approaches in place to choose from, many of these feared outcomes may be avoided.

The newest program I have created is for adults, not children. This program will be helpful to anyone who has struggled with containing intense emotions (especially the unpredictable 'up and down' variety!) or issues concerning forming a sense of identity or life direction. So many issues overlap between the supposed "borderline personality disorder," and autism spectrum disorders.

Besides the two issues above, both conditions share black and white thinking, difficulty comprehending wholes from parts and also an overall breakdown between the brain's posterior and anterior networks. More information, including reference citations, is all included in the books.

This isn't meant to be an ad. I'm just really excited about this new program. I'm even more excited to learn that it is possible that the deplorable diagnosis of "borderline personality disorder," may actually be removed from the next official psychiatric manual!

Let's celebrate!!

http://www.laurapaxton.com/borderline.html

Book, Workbook and Logbook Set Shown Below:

7:37 AM - 6 Comments - 12 Kudos - Add Comment

Loss
Current mood: sad
Category: Goals, Plans, Hopes

Have you ever felt like you were strongly expected to do something that you absolutely could not do?

Our culture dictates that we get married, work to earn a living for ourselves, and that we become productive members of our communities. When we are unable, for whatever reason, we experience loss. We also experience shame about ourselves.

Lately, I start to have positive memories of my mother, for the first time since she died five years ago. I stop suddenly and cry, remembering good times that were buried under layers of resentments. If only those layers could have been lifted years ago, would my life be different today?

My father wrote a poem once. It was a short and simple Haiku. He wrote:

Many years later, 

Beneath fallen leaves, I found

Lost toys you cried for.

My parallel is that if I had found those toys, would my life really have been different?

We cry for anything lost, whether that be an object or a person. People with autism tend to cry more for objects, especially as children. A small stuffed toy can be held close. It is small and can fit more easily into a visual perceptual field than a big person with a complex face. Bonding with a toy instead of a parent just makes sense. My first words began with food, then toys and then my parents.

How DO relationships become lost? Does a slow erosion occur? Is there a sudden moment of betrayal or a shocking change in the personality of the other that shatters the bond forever? For an autistic person, the change always seems fast and unexplained. It is always a shock. We just never see it coming. Neurotypical people can see warning signs that something is wrong. They can also see how their behavior is affecting the mood and well-being of others. Autistics just do not possess that same skill.

One of the criteria for borderline personality is "intense, unstable relationships." How can they be otherwise when a person has autism? Within my support group, a small few have maintained relationships or marriages for five years or more.

It's just so hard to spend life having to cry out, "I tried. I did my best. I just couldn't do it!" The expectations of others do not cease. We look normal on the outside. As children, no one labeled us with pervasive developmental disorders. People over thirty especially have received no understanding and "no breaks."

Many times in my life, I convinced myself I had the answer to everything. I was married for six years. I worked professionally in the mental health field for a while. Still, my life has been a mystery of high peaks and low valleys, financially, emotionally, and in every way. I'm not diagnosed as bipolar, either!

I have a recurrent "mood disorder." I feel pain because of what I have lost and what I am unable to do, despite my best efforts. That can really get me down. I have an anxiety disorder with occasional panic attacks. That means that I DO get agoraphobic and sudden moves, noises and lighting changes can make my heart race and I feel unstable and dizzy.

This is why I say that my Asperger's Syndrome is primary and my mood disorder is secondary. Most doctors have agreed. Usually, the ones who don't are either not board certified or they haven't spent enough time with me yet to have it all figured out. Asperger's symptoms remain constant and even increase as my mood symptoms decrease.

It's almost like a mathematical equation. Asperger's is a way of dealing with life in a world that is hard for us to process. Therefore, the more stress we experience, the more we obsess, perseverate, become lost in our interests, lose track of time, isolate and avoid people. In other words, when life is bad, we naturally make it worse!

In my original Borderline and Beyond, I wrote about the grief of a "whole life." Clinical professionals of that time period were writing articles about how people with "borderline personality" were not mature enough to experience grief. The statement immediately struck me as absurd. Careers not working out. Relationships not working out. Finances a mess. Emotions a mess. It's like a hurricane hit over and over. Grief is an ever-constant companion.

To me, "personality disorders" are really types of pervasive developmental disorders. That is why 80% of people diagnosed with BPD usually DO get better before they turn 40. They mature, yet more slowly. With Asperger's Syndrome, I was told to divide my age by 3. Severe Asperger's gives me 1/3 of my age (12,) Mild Asperger's would give me 2/3 of my age (24.) Moderate is the average of the two, or 18 years old. I was diagnosed as moderate.

Parents start grieving as soon as their young children are diagnosed with autism. However, these parents often don't realize how lucky they are. At least they have a chance to intervene and to make life better for their child. Adults with Asperger's were never diagnosed. Therefore, we did all the grieving and "stressing out," while our parents expected and pressed us to be "normal."

My mother knew something wasn't quite right with me. I remember one time in the car, she said, "I just thank God every day that he gave me a healthy, normal child," and she was crying. From the day I was born, my doctor was concerned. I was the jumpiest, most nervous baby he had ever seen. My relatives even wondered if something was really wrong. Then, at ten months, I became the "incredible talking baby."

Parents, if your child is nonverbal, or if your child is hyperlexic, these are two sides of the exact same coin of autism. Please be aware of this and do not train your hyperlexic child to entertain others like a trained poodle. The reason for hyperlexia is that using words and talking is the only way to communicate to get needs met. Nonverbal reality makes little to no sense for many of us.

Autistics are born speaking with a flat, almost monotone voice. We listen to others and learn to copy their variations in speech. Some of us become very good at adapting this way. I am able to act, as are some of my close friends with Asperger's. The problem is that everyday living is an act. This is why I'd rather be alone, keeping my life simple.

I do go to meetings twice a month at my local autism society. I go out on Sunday nights to socialize with Aspie friends. I talk to at least one, and usually 3-4, every day, in fact! Doing so has really brought me OUT of a rut. Six months of occupational therapy, a good neuropsychiatrist and some specialized education in living successfully with autism have ALL brought me incredible rewards.

I've been grieving my mother this week. I've been grieving a romantic relationship that ended a year and a half ago. I've been grieving the sense of purpose that borderline personality advocacy once had for me. ALL of my books are out of print. They do not exist, even in any warehouses or fulfillment centers. If you go to Amazon right now, you will see my used books being sold for $100 or more, and people are paying for that.

WHY did I let this happen? Maybe it's an "Aspie Thing." The books no longer reflect my integrity as a person. Therefore, I cannot sell them. However, having run out of products completely, I have gone into "survival mode." I've worked for over a year to synthesize over 125 major research articles about the links between pervasive developmental disabilities and supposed "personality disorders." I've expanded the text book and the workbook is being completed as we speak. I do not think this process will take longer than a week or two.

It's scary. I've been letting go of a lot of old ideas and embracing new ones. I'm taking a risk to propose concepts that have not been presented in this way before. My career and my future is depending on it. You have no idea how often I've become frozen at my computer, just paralyzed with anxiety about it all. Then, I'll find an obsessive escape or diversion. Hours later, I wonder where my day went and feel guilt because I've done no work.

I have autism. Autistics are extremely detailed and conscientious. We are thorough. We want to do the best possible job. Anything less is just not worth doing! I'm getting close to the end of my project, and letting go is somehow hard. I've heard that all authors grieve at the end of a book project. I know that I have in the past. It's just normal. We have a relationship with our work that is over as soon as the book is published.

Like sending your children out into the world, we just have to let go and let our books have a life of their own. Will they make it? Will they be there to support me in my old age?

Asperger's Syndrome has been about loss and difficulty compensating. Asperger's Syndrome has also been a gift from God to give me and others with it a unique perspective that others need to see.

What IF I had remembered how much my mother loved me before now? What IF I hadn't lost my toys in the woods many years ago?

All I have is now. Recovery is about taking back what belongs to us, such as the natural joy that really is our birthright. Every loss opens the door to gain. All we need is the knowledge of how to open the lock. The key is to develop our OWN more realistic expectations of ourselves and to learn how to just let ourselves be ENOUGH just as we are.

10:49 PM - 13 Comments - 22 Kudos - Add Comment

Growing Up With Autism
Current mood: creative
Category: Goals, Plans, Hopes

Several parents have written to me and asked to hear more about my experiences growing up with autism, so that they might understand their own children better. Each person's experience is very different. It has often been said, "If you've seen one autistic, you've seen one autistic." Each of us expresses our traits in different ways. However, I'll share a little bit about what it was like. You might see glimpses of your own child, or you might not see your child at all. Still, I'll share my story.

Right after my birth, the doctor came to my mother's bedside with concern that something "just wasn't right" with me. He said that I was extremely jumpy, sensitive and over-reactive to everything around me, screaming and crying in reaction to lights, touch or any change in my environment. My mother thought that I was just responding as she often did, because she was so incredibly over-sensitive to her environment. My mother was insecure before I was born about her ability to be a mother and to soothe me. Still, when she found out she was pregnant with me, she cried with happiness. I was wanted and she wanted to love me.

I don't remember seeing my mother's face until I was about four years old. The reason I know that time was because it was when my little brother was moved into my bedroom. He was two and in a crib. Suddenly, my mother appeared in the evenings to sing us both to sleep. She had a beautiful voice. I can remember my father's heartbeat, as I lay on his chest. I remember that from being so small that it may have been from infancy. When my father brought me home from the hospital as a newborn, he immediately began reading "Walden Pond" to me. It is really no wonder I learned words so quickly.

As a very small child, what I remember most was feeling fascinated by textures and just wanting to touch things to feel the differences between them. Strangely though, the first time I touched paper mache at school, I cried. The teacher said I didn't have to do that project!

I would also cry or not be able to concentrate in class if I had a scratchy sweater on or a label on my neck. The most unusual thing I did as a preschooler was to insist on eating each food on my plate with a different spoon. This was so the flavors couldn't touch or mingle in my mouth. This amused my mother's friends when we ate out at restaurants or cafeterias. I've really come a long way. Many of my friends with Asperger's still cannot mix food together, but it doesn't bother me anymore.

I spoke very early, over 50 words before my first birthday. Ten words preceded mama and daddy, although my mother did not record them in the baby book that way. My first word was "cookie." Of course, it was because I wanted one. Then "Hippy" the hippopotomus, and then "Bear," the teddy bear. I remember them well. They were always with me.

I also remember my mother's scarab bracelet. I'm sure she dangled it into the crib. It was a gorgeous, multicolored, shiny bracelet. When she passed away four years ago, I inherited it. It is my most cherished possession. Right after my first birthday, just before 13 months, I spoke these words, "Take the baby. Pick it up." It was two sentences, back to back. I believe I must have been repeating something. I had perfect echolalia. From two and a half years on, I could recite the whole alphabet and I could repeat nursery rhymes word for word after only hearing them once.

So, at that time, my parents believed they had a wonderful, gifted child. They had great difficulty believing I had any problems, whatsoever. The truth was that I could not tolerate being around other people for very long. When other children visited our house (which was rarely,) I soon retreated to my room. When I started school, normal life for me was to eat lunch all by myself, for the other children to tease me and call me "weird," and for report cards to complain about my "daydreaming,"and "spaciness."

I lost things constantly, like pens, books, homework assignments. By 5th grade, I was in detention about half of the time for that. Other students actually "tried to organize me," because they felt sorry for me. I did not "get a grip" on organization until my mid-30's. Now, I love being organized. It just feels better.

At 4th grade recess, I had two questions for my teacher: (1) Can you tie my shoes and (2) How can I get the other kids to play with me? My teacher called my mother repeatedly to ask her to teach me to tie my shoes. She tried for hours, weeks. Finally, my father showed me how to do it with two loops to make a bow. I still tie my shoes that way. Over the past few years, I've seen autistic students come to school with velcro shoes. Wow! I wish those were around when I was small.

Whatever the teacher said about how to get the other kids to play with me never worked, so I gave up and recess came to be all about swinging for me. That was all I wanted to do every day.

My younger brother had a very unfair time. I was demanding. Things had to be a certain way or I would "scream." My brother can attest to this. Also, when we played games, I had to make up all the rules and have total control. He learned early on not to play with me, just as the other children at school had.

When my parents or teachers got mad at me, I rarely understood why. Rarely were punishments explained. Because of this, I grew up in fear of doing the wrong thing, but very unclear what the wrong thing was. Nobody knew about Asperger's back then. Nobody knew that I couldn't generalize from one situation to another what the rules were!

I was considered "so bright," that no one believed me when I honestly would tell them I did not understand what was wrong or why they were angry. Complicating this is the fact that I cannot gauge how intense anger is. Sometimes, I see what to someone else is a neutral expression, but I see rage and cringe and back into a corner. Sometimes, someone is absolutely enraged with me, and everyone around me notices but me.

Autistic people DO have empathy. We have empathy for what we understand and have experienced, just like anyone else. The problem is that our day to day experience is different. Day to day life is just more stressful.  If a person gets my attention and says, "Hey, I've had a rough day. I need to talk," I'm completely there for them, focused on them 100%.

However, let's say that the sun is setting outside. I walk into a room and become immersed in the colors of the sunset. I am watching so intensely with my eyes that I'm not hearing an angry person slamming things down and cursing. The person thinks I have no empathy. I believe this is the source of misunderstanding about empathy. My friends who also have the Asperger's Syndrome type of autism are the most empathic people I've talked to in my whole life. It's because they understand my life!

Imagination is another area that is limiting for a Kanner's autistic more than an Asperger's autistic. For those who don't know the difference, Kanner's involves speech delay and Asperger's does not. In many cases (such as mine,) hyperlexia (very early talking, reading and writing) occurs. I wrote my first short story book when I was five. It was read on a local television program.

I have always been imaginative, even to the point where my father would marvel that I could spend hours in my own world. I would talk to imaginary people and walk through palaces I could see but no one else could, even when I was only two and a half. The picture of me bundled up in a blanket was from one of those days. My father even wrote a poem about it. Let me explain how I lack imagination: asking me to imagine my life 5 yrs from now, a year from now, and even tomorrow. I cannot imagine REALISTICALLY and plan from that perspective. This is why I DO need help with many areas of my life, with issues such as prioritizing. I obsess on getting priorities right until nothing gets done.

Many of my needs were before dismissed as "histrionic" or "dependency traits." I now realize that I need people. I need people to help me organize, prioritize, express my deeper feelings, clarify theirs and to not get lost when I drive across town. This is NOT because I have dependent personality disorder or even traits of it. This is the REAL story of the truth of me. Sadly, once someone is diagnosed with a personality disorder, it is next to impossible to get professionals to go deeper and explore root causes which may not lie in trauma, but in brain wiring and biology.

In the picture of me at two and a half years old playing my "imagination games," I am bundled in a blanket. Bundling is another thing autistic children and adults do. It helps us feel secure. I still sleep with 5-6 heavy blankets, even in the summer. I just turn up the air conditioner. When I'm really stressed, I use an air mattress as a waited blanket on top of it all. That works well. Most weighted blankets for adults start at $100 on-line. Luckily, I haven't had to buy one. However, often our sensory issues cause us to crave tight swaddling and heavy pressure. Just sitting with a weighted vest or lapboard can be calming through the day.

Another thing autistic children do is to line things up. My parents didn't see this as abnormal at all, but I had about a dozen dolls named Sue. They all lived in a "Sue Row." I would play "landlady" and go collect rent from the Sues. If I really liked a doll, she would receive three full names, such as "Virginia Crystal Elizabeth." I still love to line up and organize things. It gives me a false sense of control, because quite honestly, my sense of time is really missing. I just don't seem to have that.

Some people with autism (such as Dr. Temple Grandin) say they think in pictures. I see what people say in type. I see it spelled as they are talking. I also do see images or pictures, and I need specific details to answer questions. Questions that are too generalized are not possible for me to answer. My visual memory on one test measured below the 1st percentile, as did my sense of mechanical understanding. I know a LOT of words. I had a 750 Verbal SAT score when I started college at 16 years old. I realize now that my emotional age at the time couldn't have been more than 12, and it could have been as low as 6. (Many clinicians estimate emotional age at 1/3-2/3 chronological age for people with autism.)

Needless to say, I had problems. Lots of them. The sad part was that no one knew to call it autism. I got in trouble a lot. It took me four years to pass the road test to get a driver's license, and within a week after receiving one, I had a car accident. My life was endangered once and I was close to being successfully murdered. I was hospitalized repeatedly in psychiatric hospitals. I received two master's degrees by the time I was 23, but have only worked enough to support myself 60% of my adult life. 30% of that time has been through self-employment (writing books and offering workshops.)

I was told I was hopeless and had a "borderline personality."

Thankfully, I never believed any of that. I developed my own recovery program for BPD that has worked for me and for thousands of other people now. I feel really good that I have made a difference. However, over the course of this year (and a decade after my original recovery from BPD!) I was diagnosed with nonverbal learning disability, sensory integration disorder and attention deficit disorder before a brilliant doctor connected the dots and said, "Asperger's-definite, moderate."

At this point in time, I also want to make professionals aware that people who present with "borderline style" symptoms may actually have autism instead. I have a three page chart in the new, expanded 2006 edition of Borderline and Beyond that shows how similar the biochemistry, basic brain structure biology, and certain core behaviors are for both conditions. My next blog may be to post that, to invite discussion. I present facts but not conclusions. I'm curious about what conclusions might be drawn.

My life has never been easy. However, today I am grateful for my autism. I really do understand why some are calling it "awetism!" I'm amazed by my friends, with their unique talents, gifts and perspectives. I'm also grateful for my own. I feel I have a neurological difference that is a disability ONLY when I don't mange it well. I manage it through occupational therapy, medications, biofeedback, Wilbarger Brushing Protocol, Listening Therapy, and many other methods. Under stress, even with "all the above," sometimes I cannot compensate enough to hide my autism. That's actually okay with me today. I can let myself stim (rock, twirl my hair, sway from side to side,) or whatever I need to do. I wouldn't feel the urge if my nervous system didn't need balance!!

Not all people with autism have sensory issues, although over 85% do. In my case, the sensory issues are moderate. My social issues are also moderate, although I can cover them up well when I'm not under stress. I really appreciate and am grateful for my dedicated, laser pointed concentration and eye for details. I'm grateful for my passion for projects and for my ability to put seemingly unrelated things together in a new way. I am happy God made me the way I am.

The genes for autism with mental retardation and the genes for those with genius level IQs are indistinguishable at this point. So, if a pregnant mother could be told she would have an autistic child, she could choose to abort it. I'm grateful my parents weren't faced with that decision!

My father said I was an extremely difficult child to raise, much harder than my brother. My mother and I just didn't get along most of the time. She was such an enigma that she rarely shared her personal thoughts with anyone, including my father. I'm pretty confident I inherited my condition from her. A curse? No. A plague? No. A blessing? Yes. I believe children who are autistic with low IQs are also blessed. Most of them that I've known seem basically happy, until they become frustrated that they cannot communicate enough to get their needs met. This is sad.

My parents raised an autistic daughter and never knew it, although they did worry about my development quite a lot at times. I am so thankful that God put such patient, loving and caring parents in my life. My father has shown me unconditional love and he is there for me no matter what.

I do NOT wish I were born "normal," or "neurotypical," as we call it. I do NOT wish I had been cured, either. I only wish people had understood why life was harder for me and helped me to cope with it better. Most people with autism believe that if we were cured, we would lose the essential nature of who we are. There's nothing WRONG with who we are. It just takes a bit longer to live with the difference. It's similar to being left-handed, but on grander proportions. That is why autism awareness is a passion of mine.

Recent studies have shown that the feeling of rejection is registered in the same part of the brain as physical pain. This makes sense, since species survival is dependent on not being ostracized or "culled" from the community. The sense of rejection is an experience I had all through school, until I acclimated and it became normal for me. Also, I felt that my mother rejected me and didn't want me to be the way I was. That hurt. Whether it was the truth or only my impression may never be known.

I understand overwhelmed parents who are working hard to raise money for a cure. I don't blame them. Raising us is tough. I will say that the best gift you can give your child is unconditional acceptance. Love him or her just the way your child has been created.

Most parents have been told to try to find your child's "niche," or special ability and allow your child to pursue that. I agree with this completely. My "niche" has been writing. It's the only reason I haven't been on public assistance or back at home living with my parents, as  80% of my friends with Asperger's are. Statistically, only 30% of us work full time and hold down jobs!

If your child has autism, the future is far from bleak. Even if he or she DOES need more support through the years, as I have, your child can learn to cope with and appreciate the strengths within autism. Help your child find the "spark" within and let their brilliant inner light shine through.

For parents, I hope this has helped somewhat. For those with BPD or autism, I hope it has shed at least some light on things for you. Now that it is 4 am, I'll try to get some sleep now.

Thanks so much for reading!

Until we blog again..

Laura

http://www.laurapaxton.com/borderline.com (to download my new E-book..thanks!)

7:34 AM - 17 Comments - 21 Kudos - Add Comment

Shaken,Stirred and Upside-Down!!
Current mood: stressed
Category: Goals, Plans, Hopes

I have really had a mixed up, shaken up, turned upside-down kind of week!!

When this happens, I cannot help but hear the Tori Amos song in my head, "God I love to turn my little blue world Upside down."

Of course, Tina Dico's song on MySpace really capsulizes my experience this week.  The title, "Give in," is a short, simple way to remind me about the simple beauty of "surrender" to whatever is going on!!

I had a colonoscopy, even though I'm three years under 40. It had to be done. My mother died of cancer at a young age, and by the time her colon cancer was detected, 1/3 of her colon had to be removed. After watching that nightmare, I was relieved that only one small benign polyp was found. Preparing for the procedure, nervousness about what they would find, my basic anxiety about doctors that I've always had..well, it pretty much reached epic proportions, although all turned out to be fine!!

At the same time, I was suddenly forced out of my home due to a maintenance emergency. I have temporarily been in a hotel, and two mornings ago, 5 men knocked on my door, waking me up. They were there to check my fire alarm. No one warned me that I needed my earplugs.

I emitted a spontaneous scream, followed by tears. Then, later on, all the alarms in the entire facility were set off at one time. Needless to say, two tranquilizers, two tylenol.. still shaking with heart racing an hour later. Finally, I could nap for a couple of hours. I haven't been the same since it happened, however. I used to have a regular "routine." This has been shot to pieces completely due to the constant change and chaos around me.

People with autism HATE this. We HATE sudden changes in routine. Well, for me, my inner sense of equilibrium was all taken away and then continually churned. I'm hoping that tomorrow, I can recover some of my routine. Since the move, sleep has been nearly impossible. I'm lucky to get to sleep between 3-5 am.

Not all autistics are strongly affected by noise. In 1964, Bernard Rimland's research showed that only 40% of Kanner's autistics had hyperacuisis (overly sensitive hearing.) No study that I know of has focused on the Asperger's type that I have. Lots of times, fire alarms do not shake me up. This one was shrill, high-pitched and first thing in the morning. Noises like that actually are translated in my brain as physical pain--as if someone picked up a mallet and hit me in the head. But, if someone DID hit me with a mallet, I might not react much. My pain tolerance is pretty high.

I used to believe meditating a lot would "fix" this. Well, practicing mindfulness DOES help a lot. My body's involuntary reactions to sensory stimuli cannot be changed as easily, however. This has been hard for me to accept.

I actually finished the "E-Book" this week. Even that was a stressful accomplishment. Cover design for the new book is still in the works, so I'm unable to sell print copies yet. Every day I'm receiving several e-mails from people who want the new book SET.. Well, that stresses me oub because I haven't finished the workbook yet. I'm close to all of these goals. I have to keep reminding myself to believe in myself and that whatever my timetable is must be what is meant to be!!

Tina Dico sings, "Give in-- to your confusion.  There's no good in waiting. Why you're unusual--Leave it behind--Then change your mind"

and my favorite, favorite part, "Take what you find--It will be good enough."

Beautiful. Poetic. Thanks Tina Dico. You are truly loved and appreciated.

Currently listening : Give in By Tina Dico Release date: 22 November, 2006

7:33 AM - 17 Comments - 12 Kudos - Add Comment

What Having Autism Means to Me
Current mood: content
Category: News and Politics

What Having Autism Means to Me

White Tiger Dream Press Post.2

Can you believe that I've only officially known that I have autism for about two months now? A year ago, I began a search to uncover the reasons for the many mysteries of my life. Like the Earth, I think each person has "seven great wonders." Mine were these: (1) Why did I never have any friends in school until I was 16 years old? (2) How could I speak in complete sentences at one year of age, and yet not be able to tie my shoes until I was nine? (3) How could I graduate with a Master's Degree and a 3.9 average at 21 years of age, and yet be fired from my first job because of an "inability to make small talk with customers?" (4) How is it that my power of concentration is so incredibly good that I have not noticed earthquakes as they were happening? (5) Why is it that I have an extremely low tolerance to stress, and any extremity of light or noise causes my heart to race—and (5b) Why don't other people come home from work every day with a migraine and go straight to bed? (6) Why do I love to collect shiny objects, such as sparkly plastic gems and marbles? Why is it so much fun to arrange and line them up? Why do I feel a sense of inner order and security when I finish doing this? (7) How is it that I can entertain myself for hours on end and never feel lonely?

It actually took a full year for me to solve the "7 Wonders of Laura's World," and to get a confident diagnosis of having an autism spectrum disorder. One reason for that was that I could not hide the fact that I was previously diagnosed with "borderline personality disorder." After all, most people in the psychology field were familiar with my recovery program that was published in 1999. I was told that there was not much evidence of "comorbidity" between BPD and autism, and that character problems were bound to be primary, above anything that might be neurological in origin. I literally had to fight very hard for the truth. Eventually, I found a board certified M.D. specialist in autism spectrum disorders who was very experienced with diagnosing adult women. The strange part is that four of the women in my autism support group told me later that years ago, they were diagnosed as "borderline," but they never told their assessor when they were tested for autism!

Why was it so important for me to pursue a correct diagnosis? I had undergone a very stressful time of my life that almost exceeded my ability to cope with it. Still, I did not act "borderline" in any way. Out of six assessments performed over the year, all stated I did not meet the criteria for "borderline personality disorder" any longer. Why did I keep going deeper with the assessment process? I am a person who is committed to discovering the truth. Like most people with Asperger's Syndrome, I am perseverative, honest to a fault, conscientious, loyal and tremendously good with details! These character traits are my true character traits. I am proud of them. When I was diagnosed with a personality disorder, all I could feel was shame.

My recovery program, Borderline and Beyond, DID focus on the positive aspects of being "borderline," such as a natural empathy for animals and small children, enhanced creativity, difficulty with conformity, and a childlike wonder about the world. Isn't it interesting that members of the autistic spectrum also share these positive qualities?

For me, writing, "Hi, I'm Laura, and I'm autistic," feels really good. Finally, there is a name that explains the struggles I have experienced all my life that does NOT involve blaming my parents or searching for past traumatic memories like a Puritan on a witch hunt! To say, "I am autistic," is my redemption. I know now that I am not to blame for shutting down when I feel overstimulated or overstressed. I know that there doesn't have to be a "psychological reason" for every panic attack that happens. Sometimes, a noise is too high pitched or loud. Sometimes, a person stands too close. That's all.

Recognizing that I have autism is a great relief to me.  I know that when parents hear that about their children, they often experience a deep grief, because they are unsure how much of a normal life will be possible. Well, I had a totally abnormal life, but Asperger's did not begin to be officially diagnosed until 1995, so I didn't receive any of the services that the "lucky" children get today!