523: Aspergers and the MTHFR Gene

It’s been over a year since my five ER visits and week-stay at the hospital. I am ready to be proactive again in regards to my health, even as I have lingering post-traumatic stress from the care I received while in hospital, e.g., not believing I was sick, accusing me of creating my symptoms, referring me to psychiatric care, insisting it was Fibromyalgia, refusing to do tests, refusing to keep my hospitalized for care, etc.

Turns out, after a two-hour tilt-table test at the University of Washington Hospital and conclusive evidence read by a specialist that indeed I do have a ‘real’ condition. A condition closely related to POTS Syndrome. The key for me is to keep up my potassium and sodium levels, stay hydrated, and not over-do it. I drink lots of coconut water and take pink Himalayan salt and a variety of supplements. I was also diagnosed with joint hyper-mobility syndrome (possibly EDS) which is a probable cause of my POTS-like Syndrome.

My symptoms prior to going to the ER last year were weight loss, hair loss, loss of appetite, neuropathy of all limbs, autonomic dysfunction (including digestive pain, not being able to sleep or sit up, heart rate of 160 standing/120 sitting), chest pain, mid-back pain, all over fatigue, weakness, shaking, and generalized pain. I’d spent a good month in bed before the symptoms worsened. Also, I had signs of dehydration—white tongue, etc.

It still amazes me the doctors thought I could control my heart rate, and literally make it go from 90 resting to 160 standing and back down to 90 resting. They must have thought I had super powers. Or they just didn’t want to face facts that I might have a RARE condition!

Anyhow, because of the stress of being in and out of hospitals and seeing multiple specialists, I never wanted to see a doctor again in my life. I have since, but not because I wanted to go.

However I am ready now to get some blood work done, after briefly reading about the MTHFR Gene. (Thanks to a reader for telling me about it.) I have been trying remedies for years to rid myself of depression, fatigue, pain, and the like, particularly related to PMDD. This gene could be another piece of the puzzle. And if so, folate treatment could be the answer. I have listed a few links, the first ones that I found that helped me to understand the gene’s role in our bodies.

PMDD, POTS, and EDS (Ehlers Danlos Syndrome) are common with people on the spectrum. I thought this gene was worth mentioning, as well.

I started going back into my far infrared sauna today, too.

Another reader said MTHFR looks like MOTHER F***ER… which made me giggle.

Okay, here are the links. Step-by-step we are finding answers.

If direct links aren’t working, copy and paste.

http://mthfr.net/mthfr-resources/

http://www.nwimed.com/mthfr/

http://www.doctorbecky.net/mthfr.shtml

Much Love,

Sam

425: What if I don’t have Aspergers?

What if I DON’T have Aspergers

But what if I don’t have Aspergers? What if this is just me clinging onto a thread in hopes of not being alone in this world?
What if we are just aliens, light-workers, empaths, sensitives or advanced spiritual beings?
What if I am a reincarnated sage?
What if I am a Buddhist paying for previous karmic waves?
What if I am truly crazy, self-inventing my own condition to feel more normal in claiming I am unique?
What if Aspergers doesn’t exist and this is just a human condition?
What if this whole Aspergers is a trend and being over diagnosed?
What if I am making this up in my head to fit in with a collective?
What if I find out from an expert I have something else and not Aspergers?
Am I smart enough to have Aspergers?
Am I odd enough?
Am I enough of anything?
Pleaseeeeeeeeeeeeeeeeeeeeeeeeeeeee stop!
Who cares?
Really?
Get rid of the name. Call it a chicken-foot fungus dance. Call it the mushroom’s puke master. Call it genius. Call it gifted. Call it looney. I don’t really care!
WE found each other. And WE have more in common than not after years of feeling isolated and alone.

I don’t care what man-invented name, based on a collective documented list of traits based on the observation of some male behavior years ago, was the reason we met. WE met. And that’s what Aspergers means to me: Union.

We are together. We are no longer alone.
Perhaps we ARE from another planet.
Perhaps we are the only humans really here and the rest are reptilians.
Perhaps we are light-workers.
Perhaps we are entirely lost and confused.
Perhaps we are crazy nuts.
Perhaps we are the change the world needs.
Perhaps we are a trend, a wake, or a breaking.
Perhaps we are the new normal.
Perhaps we are just like everyone else.
I don’t care.
Stop trying to analyze what we are and who we are and why we are, and accept WE ARE.
There is no you verses them. There is no us verses them. There is no separation.
It is all just manmade games.
We just managed to survive.
To keep our heads above water.
To see through the madness.
To understand there are things, definite things that need changing in this world.
And if we want to start focusing on self-awareness, self-love, and self-acceptance, then YAY US.
I don’t care how you get there….to that point where life starts to make sense and you start to realize you aren’t alone and aren’t imperfect and have so much to give the world.
I just want you to know YOU matter and YOU make a difference and YOU are never alone.
Stop tromping over our parade, all of you doubters, critics, and people who feel the need to give your two cents about something that isn’t your journey.
I don’t care.
I really don’t.
Beyond the need I feel to tell the rest, who have struggled in pain so very long, that you are right where you need to be. Whatever you need to hold onto to build yourself up after this world has attempted to break you down, is what you need and is YOUR choice.
Shine, shine, shine.
It doesn’t matter if you have Aspergers or don’t, or if this word never exists again.
Let go of the word and reasons.
Just let go.
Breathe.
And be.
I love you.
Whatever you choose to call yourself.

385: Navigating the Female Aspergerian Mind

“Samantha Craft,” M.Ed. has served as an educator for adults and children, a spiritual counselor and an advocate for individuals with special needs. She holds a teaching credential and a Master’s Degree in Education, and has completed multiple postgraduate courseworks in the field of psychology and counseling. Currently, under the penname of Samantha Craft, she manages and authors the well-circulated blog Everyday Aspergers: Life through the eyes of a female with Aspergers. Her prolific writings depict the multifaceted daily life of an adult with Asperger’s Syndrome. Samantha maintains contact with people across the world touched by ASD and serves as the founder of an online support group for adult females on the autistic spectrum. She resides with her husband and three sons, (one with ASD), in the state of Washington.

This article may be duplicated for professional use in an educational setting and for family members in the home setting. Please keep contact information on the page. The works are copyright protected and not meant for duplication for groups or presentations. Copies of the edited and complete article can be found in the future publication of a peer reviewed journal.

Navigating the Female Aspergerian Mind

Chances are, because of the lack of available resources in regards to Females with Asperger’s Syndrome, an undiagnosed female with ASD has slipped under the radar of many professionals. With today’s growing rates of autistic syndromes, any professional established in the field of mental health therapy would benefit from careful examination of the complexities of Asperger’s Syndrome, as it pertains to the female experience. Until recently, little to nothing was known about the female with Asperger’s, as most, if not all, current diagnostic tools are geared toward and develop based on the male genders’ characteristics of ASD. The simplest of signs that might indicate the female representation of Asperger’s to a practitioner are often misunderstood, misdiagnosed, denied, diluted, or unnoticed.

As a result of under-diagnoses, a large majority of females on the autistic spectrum are reaching adulthood as survivors of multiple emotional and physical traumas. Because limited resources and tools are available for working with the female client with Asperger’s, professionals sometimes fall back on what has worked with clients who do not have ASD, regardless of the fact that Asperger’s is not a mental health condition, but a neurological syndrome. More often than not the practitioner treats the symptoms and not the condition, focusing on the obvious comorbid traits of Asperger’s, such as depression and anxiety, without full consideration dedicated to the whole of the person, in particular the fact that he is working with an individual who views the world somewhat different from the mainstream client. Though the professional has the client’s best interest in mind, in some cases the professional’s overall lack of education and limited know-how can be not only non-beneficial for the client with ASD, but detrimental to the psyche. Wherein the astute practitioner recognizes the challenges at hand in regards to the female with ASD, he seems to be a rare minority.

Considering the sensitive nature of the female with Asperger’s condition, an individual whom has likely often found herself a subject of alienation, ridicule, suspicion, doubt and abuse, it is vital for the professional to understand the power she holds to make or break her client; especially the client’s feasible outlook on seeking out further assistance as pertains to her emotional well-being. In example, females on the autistic spectrum develop both conscious and subconscious strategies in their attempt to function effectively in a world which often appears unpredictable and potentially volatile. Oftentimes, a female with Asperger’s is using all of her mental and emotional resources to merely survive and navigate the social world. In response she is fatigued and over-taxed. If a female is partaking in mental health therapy, and the therapist suggest to her that she change or adjust some of her coping mechanisms, for example seeking out strategies to decrease verbal processing, the suggestion itself has the potential to create increased anxiety and feasibly shutdown the client’s ability to remain focused and present. Aspects of the unexplored “Aspergerian” mind can present challenges and/or roadblocks that the practitioner does not necessarily encounter in therapeutic dialogue with ‘typical’ clients, e.g., those presenting with mental health illness without a neurological condition. (I avoid the word ‘disorder’ entirely, in regards to Asperger’s Syndrome, as it is my firm belief that just because one functions outside the perimeters of the current majorities’ collective agreement of norm does not by the process of negation establish a select group as abnormal or having a disorder.)

In understanding the female’s (with Aspergers) mindset is uniquely different from the majority of mainstream society, including her capacity for complexity of thoughts, intense mental connections/scaffolding, and advanced logical sequencing, and taking into account the potential effects of a lifetime of repeated humiliation and abuse, it is advisable for the professional to consider the (ASD) client’s trauma may reach far beyond what is considered the typical depths of post-traumatic stress. Add this to her tendencies for sensory-stimuli overload, and the female with Aspergers will likely exhibit an instinctual flight-or-flight response to any new situation; especially those pertaining to vulnerability and emotional intimacy. Other factors hindering the benefits of therapy include the client’s ability to recreate her self-presentation based on how she perceives the professional perceives her. Often a master actress, the female with Asperger’s has developed a toolbox of masks enabling her to move in the world undetectable to the naked, untrained eye. Here in the client-practitioner relationship, the client is likely to mold into the persona that she believes best fits the comfort-level of the professional, moving within the room of therapy just as she moves in the exterior symbolic rooms of her life. A professional, unstudied in the elements of the female condition of Asperger’s, is apt to miss the nuances of a given client’s chameleon qualities, overlooking the client’s subtle changes in representation of self or wrongfully assuming the client is resorting to trickery and sabotage.

The female with Asperger’s, while extremely witty and intelligent, exhibits continual emotional fragility. In some cases this is hidden behind emotionally-detached humor or within the guise of a persona she is currently exhibiting; e.g., she may imitate a character on television. Though she is emotionally vulnerable, she is capable of hiding herself from other people and is keen in her honed ability to detect social norms and acceptable behaviors of a given situation. Given her nature and character, one word or mannerism from the practitioner may be overanalyzed and/or perceived by the client as a threat or criticism. Misinterpretations, distrust, or a number of other variables, can lead the client to shutdown (emotional withdraw), meltdown (emotional outburst), retreat into imagination or fantasy, recreate the presentation of self, and/or switch from a state of emotional presence to logical analysis. When the client is triggered by the professional and responds accordingly, the quality of the therapeutic relationship is adversely affected. Unlike the mainstream client, a woman with Asperger’s may never trust a professional once she believes she has been misinterpreted and/or criticized.

As a professionally diagnosed female with Asperger’s, in reviewing my own experiences in therapy, which encompass a decade-long-span of individual, couple, small-group and large-group interaction, incorporating a cornucopia of therapeutic techniques and theories, my most damaging experiences occurred when the practitioner was neither vulnerable nor authentic, a perceived-lacking from my point of view, that affected my capacity to connect at a humanistic-level with the practitioner. The best scenarios, in my therapy experience as the client, occurred when the professional was free of dogma, restrictions, and rigid-habits, and able to see through my mirage of disguises. In truth, I don’t think this ever happened, the best scenario that is, and that I, in actuality, through the process of vigorous self-help and psychological self-studies and applications, became my own psychologist by trade, primarily implementing Transpersonal Psychotherapy and elements of Logotherapy.

Based on my own life experience, the deep-level of understanding of my own Asperger’s condition and the personal interactions with other females on the autisitc spectrum, I have developed a list of what I would have liked to have seen, given the means and opportunity to time travel back as a client or to time travel forward as a practitioner. In recognizing each therapist has his unique style, I offer this as a list of suggested ideas, my hope and intention being to provide others the opportunity for a beneficial client-practitioner relationship.

List of Ideas

357: My Pain Conditions

I don’t often talk or write about my physical pain, mostly because pain does not define me as a person. Currently, I have several pain conditions. I suffer more in the winter months and do amazingly well in the summer. Sometimes I can get hit with flare ups from multiple conditions all at the same time, typically around my womanly cycle. That was this last weekend, and yes, that was basically hell.

The pain is not so intense that I require pain killers to function. In fact, I usually only take one over-the-counter pain killer (Tylenol) once or twice a month. I save those beauties for the super tough days. But the pain is always with me; it doesn’t go away.

In doing research about hyper-joint mobility syndrome (closely related to EDS, if not the same?) I discovered it is not uncommon for people with this type of condition to have extreme fatigue by mid-afternoon. That is me for certain. Each day at about four in the afternoon, I am ready to settle on the couch. If I sit, in the latter part of the day, then I will have a difficult time getting back up. Sometimes I have to move all day, e.g., standing, walking, cleaning, errands, etc. because more often than not, as soon as I wind down and take a rest, I won’t be able to move much anymore. That’s why I am prone to spend one or two days a month doing massive non-stop cleanings of the house. It’s the only way I can do housework: all or nothing. Housecleaning itself usually sets me back two to three days in intensified pain, but manageable.

When I take my three to five-mile walks, most days in the summer, and a few times a week in the winter, I am fighting through the pain. Pain in my knee joints, hips, and sometimes back. When I say, “I am taking a walk,” it means a lot more to me than just a walk. Forcing myself out the door means forcing myself through the pain.

Simple tasks, like opening a lid on a jar, bending to retrieve something from the floor, or walking up and down stairs, hurt. I don’t loosen up and feel better after stretches. Stretches actually make me feel worse. My pain feels very much like what I imagine a person would feel after he or she hiked ten miles up hill. It is an all over, generalized body-ache. Sometimes I feel like I took a huge fall or was run over by a thousand little trolls. There are also specific areas in my body that flare up, in the sense it hurts more. I don’t actually swell or get red in areas. Flare ups usually happen in my wrists, fingers, elbows, hips, spine, neck, knees, etc. I am sure I am leaving out some area, but you get the picture. The flare ups feel like a dull ache, not severely painful like a tooth ache, just painful enough that sitting here now, as I type it feels like parts of me are throbbing and/or burning.

I am thankful I can go through my days and still function. I can climb stairs with ease, despite the pain. I can clean. I can walk. I can drive. Somethings that are more jolting on my muscles are actually dangerous for me, as I never completely heal from injuries, and actually develop something similar to scar tissue where the collagen should be healing. Thusly, I still feel the three times I suffered whiplash from car accidents, the time I took a hard fall and landed on my left shoulder, and the time a glass-framed painting fell off the fireplace mantel and landed on me. Those pains won’t ever completely go away.

My children are used to seeing me on the couch. It’s what they have grown up with. What they know as familiar. It’s one of the reasons I find so much time to write. Fortunately, when I write, I can escape my body from time to time. I think my pain is one of the reasons it is hard for me to practice being in the present moment. I am fairly certain that the combination of sensory (bombardment) challenges, Post-Traumatic-Stress Syndrome, and constant pain, make it difficult for me to want to be present.

I wake up several times a night during the harder days, usually from the hip pain. I have to shift my body a bit, and then I am able to fall back to sleep. I consider myself fortunate. I fall asleep easily at a reasonable time of night and stay asleep for the most part. However, part of the reason I fall asleep is because I am utterly exhausted from doing relatively little all day. Just sitting on the couch hurts.

I maintain a fairly good disposition. As much as I hated hearing my mother repeatedly tell me that “Things could be worse,” when I was growing up, it is true, they could be. I do have some almost pain-free days. And on those days, I can truly appreciate the beauty of just being. And on my high-pain days, the longest stretch usually lasting five days, I can remind myself, or ask my husband to remind me, that this too shall pass.

I don’t worry too much about the future. My pain has been pretty stable; in other words, I have felt this crappy for about fifteen years and the crappiness hasn’t increased, at least.

I know NEVER to run; even a short fast sprint to catch my dog will result in body pain for several days. A tumble or a fall might keep me down for a week. And the only “minor” surgery I ever had, a small laproscopic “scraping” for endometriosis, took me a year to heal from. It should have taken two days. And, yes, I still feel the pain there, likely scar tissue that never will heal.

I am super thankful I listened to my angels about six years ago. I was scheduled for a full hysterectomy. I had the operation date, and was already setting up childcare when I heard a distinct and audible: “No.” I can’t imagine what would have happened if I had the surgery. I don’t think I would have ever been the same. If minor surgery took me a year to heal from, what would major surgery have caused? Plus, my acupuncturist at the time, a healer I still see when I travel to California, she gently had offered: “I would not take out any part of a body unless it was a life threatening condition.” In other words: keep all your parts as long as you can.

I think sometimes I accept my pain conditions too much, to the point I practically forget. I get super down on myself for not being able to get up and go, to run out the door and go toss a ball or shoot some hoops. Like other things in life, I sometimes long to be “typical.”

Sometimes I make a sacrifice and will do something I know will cause me days of pain, like painting or roller skating, riding a roller coaster, chasing my son, or climbing hills. Sometimes the sacrifice is very much worth it!

The pain has been a gift in many ways. Like I said, I appreciate the days of less pain. And the days of almost no pain are like heaven. And I have been able to spend valuable time with my children. If I didn’t have this pain condition, I dont think I would have left my teaching job (I am disabled.), because I loved teaching and brought income home for the family. If I was still teaching, I would not have been afforded the opportunity to be a stay-at-home mom and to homeschool my middle-son with Aspergers.

Because of my experience, I have gained empathy for those in physical pain and/or with chronic fatigue. And I have gained a remarkable awareness regarding my own body and my needs.

I also am blessed with a patient husband who never complains when I am down. And I get to experience his love demonstrated through service and support. I have seen miracles, too. Like this last month, when I drove over 1600 miles, in a few days time, and experienced little to no risidule pain. I kept asking my angels to relax my body and heal me. And when I do my automatic writing, much of my pain disappears, too.

I don’t know why I live a life with physical pain, anymore than I know why I experienced a difficult childhood or why I have Aspergers. I do know that all my challenges have made me a stronger and a more loving person. I know that I am capable of extreme empathy, because in this short life I have experienced so very much. And perhaps that is my gift: how my suffering enables me to love more fully and to connect more freely.

I cannot imagine my life any different. If one day my pain goes away, I am sure I will be delighted; but in the meanwhile, I am so happy that I know how to choose contentment over victimhood. And I am thankful that I recognize my pain is not who I am.

I wrote this post because there are other people who experience pain syndromes, and I want them to know I understand. And because I wanted to share a little bit more about my journey.

I think we all have special gifts to share with the world, and that if we can turn our trials into compassion for self and others, then we have already accomplished so very much.

In closing, I believe there is a reason for my life. I believe we have each been called to service and each given the tools necessary to answer our calling. For me, one tool in particular has been the continual humbling of spirit. I thank my pain for reminding me of my fragility and humaness, and for bringing me that much closer to reliance on something higher than self.

Diagnosed with:
Fibromyalgia
Chronic Fatigue
IBS
Endometriosis
Fibroids
Hyper-joint mobility syndrome
Lyme Disease (The test has an over 60% fail rate. The test results were questionnable; the doctor based this diagnosis on ongoing symptoms. I tend to think I don’t have this, though, and my pain is a result of the above conditions.)

Self-Diagnosed:
PMDD

Perhaps I have?
Classic Ehlers-Danlos syndrome (I haven’t been diagnosed with this, but it is so similar to hyper-joint mobilitiy syndrome; though I do have most of the symptoms)

355: To the Professional

Take away the notepad and paper, take away the laptop, or whatever you are about to write on. I am more concerned with what you are writing and thinking than my own self.

I am uncomfortable looking at you. I don’t like your office, for one reason or another. Maybe you are messy or maybe too clean. It might smell in an offensive way or be too dark and cluttered. Then again the sunlight might be seeping through and displaying the dancing dust and pulling me in thought to germs and uncleanliness. If you cleaned, I am hoping you didn’t use toxins, and I am wondering how many people have sat in this chair before, and how they sit, how they position their body, but mostly how they position their mind.

I am wondering with each word I speak what you think and if I have answered to meet your expectations and intentions. I can guess half of what you will say and how you will say it, because I have studied you from the moment we met, and I have studied those like you before. I know more about the human language and the nuances and gestures and games than you can imagine. I can feel your energy, and I can feel how your opinion of me switches. I can feel you weighing in on me and my words balanced against your thoughts.

I am uncomfortable in all ways and trying to present myself as comfortable. And this you probably know, as I already know, and you are watching me closer, as if in watching I will grow in security and trust. But I won’t. I will feel for you what I feel for everyone. I will either like you instantly or you will make me want to run. And with the liking I will analyze why and if this is valid, this feeling of companionship and connection. I will linger here a short time, especially in comparison to if I want to run. If I want to run my thoughts will circle around you for a favorable amount of time, working inside and outside of your being and attempting to decipher the danger. If I distrust you, I will likely always distrust you. This may be nothing you have ever said or done; this is my natural instinct.

I have been preyed upon by predators and sought out by experts. I have been probed and prodded and measured one too many times. I do not like the way you measure me. Not one bit, and I want this time to end.

I want to like you, and if I don’t, I fear my own rejection; I fear the dialogue that will reach into the contours of my mind and debate the whys and hows of my own inclinations.

I will listen to you as best I can, but don’t count on me hearing all of what you say. One word will set me adrift into another place, one unusual sound or one ordinary sound from you or from the room that is silent. I will hear what you do not hear. I will hear the quietness through the silence. I will hear the pauses in your monologue, and I will question your expertise.

I will wonder if you like me and then wonder why I even care, and why it is important that you do like me, even if I despise you and everything about your space. I will still want to be your friend, and a part of me will still love you, like some pup you picked up from the alley while in a mode of rescue. I will seek harbor and refuge in this space you have provided, knowing I am paying, or someone is paying for this form of companionship that frightens me.

I will question your degrees, your education, your protocols, your knowledge, your booksmarts, and your conclusions without hint of regard. I will dive down corridors of your soul and wander about hunting out the darkness. And all this I will do as you sit there scratching away notes about me.

For I will have compiled a list a volume thick in the time you have taken for me to answer a few questions. And simultaneously, I will have composed my own representation of self to you, pulling out what is expected, and what might make you comfortable, playing the game so you can see me and not be swooped away by the real me that is locked away behind this tattered worn curtain of self.

You can’t reach in, as hard as you try, unless I know you recognize me. I won’t let you past, unless I know you are real, that you have felt the deepest pains and angst, that you, too, have been in the shadowed darkness weeping for reprieve, that you have been abandoned, ostracized, left for nothing, created into something others wanted you to be. I will not let you near, unless I know your heart has grown in the depths of the oceans and shoots out to save those who wither.

Your documented degrees mean nothing to me. Your schooling is lost. What you knew and what you think you know is not this me staring back at you. I am in no textbook and in no past discoveries. My experience is uniquely mine, and unless you have dived into the caverns of my mind, unless you can see the world of illusion, as I can, then I have no purpose or need for you.

Entirely, I sit. Entirely, I am. And I understand beyond measure what grips you and shakes you and what makes you spin. I can tell in your eyes when you are complimented you are lit, and when you are unsure you folly. I see you, like a master watching a child; I see your discomfort, your waverng, your questions. But mostly I see straight to the purity of your soul, straight into the core.

So don’t waste my time with man invented games and manmade questionnaires that nibble away at my character and personhood. I am beyond this, these guesses and marks, this test to prove something that needs no proving.

I am not this Aspergers. I am not this Autism. I am human in need of being seen.

I am not a test subject, nor am I confused. I am not sick. I am not ill in the slightest sense. I am a unique and special individual born out of the ashes into the phoenix. I am both God and Goddess and have so much to teach you.

So do not look past the secrets in my eyes to check off the boxes of your own design. Seek first in me the wisdom I carry, the answers, the knowledge. See what I have to say. Hear what my world is like, for unless you have lived inside of this me, then you are the one that remains alien.

Don’t pretend you understand my condition or my brain or my way of life. Don’t pretend you can help me. I already know your tactics and trickery. As innocent and as kind you be, to me everything you present I shall take apart and examine from source.

Present to me your own self, the deepest part of you, the part the rest of the world hides so readily in a game. Take off your mask and meet me in the playing field I recognize: one of pureness, naiveté, child-like heart and genuineness. Do not strip me of the very armor that sews my seams. Uplift my attributes and charm, the gentle grace that illuminates from the spirit I am.

Do not think that because you have a title or name that you are therefore anymore or any less than the others. You are still garbed in your fashions and mystery. Undress, strip down, bear your nakedness and show me your frailty. That is the only reason I am here. Not to teach you how to help me. Not to teach you how to change me. But to show you what truth and beauty is.

My way is not wrong. Nor is my mind hindered. My way is the one of the child of goodness and authenticity, and until you understand that what I carry is no less damaged than the stars in the sky and no less worthy than your very own heart, than you cannot reach me.

If you want to help me, if you want to truly help me, then become my student, so I can become yours. Meet me as one. And see that I am not your patient, your client, or your case study. I am me.

In all my uniqueness I am me. And in this, in being me, in being all of me, perhaps in your wanting to help me, it is truly I that will set you free.

336: I LOVE this man: Tony Attwood

Okay, this is unbelievable. I have had TWO good hair days in a row. Seriously, something is up with the stars! And just now, after thinking about Tony Attwood, I opened my email to find his message! Good hair and Attwood…. life is so good!

I have attended Mr. Attwood’s conference and met him briefly in person. Also, his books and audios were immensely helpful when my son was first diagnosed. This is his recent response to me. Yay!

Please hold Mr. Tony Attwood in healing light and love.

I thank him for the great works he does to bring a voice to Asperger’s Syndrome.

Part of today’s email:

“Your webpage is absolutely fascinating and I certainly enjoyed reading the information that you sent me. In your email you refer to my thoughts on whether you have indeed the characteristics of Asperger’s syndrome. I would say that, from what I have read, that that seems very likely as you have an insight into Asperger’s syndrome but especially the way that Asperger’s syndrome is expressed in girls. You certainly have an ability to communicate your thoughts in such an effective way…..

…you may be interested in the audio recordings of my radio interviews describing the characteristics of Asperger’s syndrome in girls. My own webpage is currently being updated and the links should be back on my webpage in the next week or so. You may be interested in listening to a radio interview I did for Brisbane 612 ABC Radio with Richard Fidler, http://www.abc.net.au/local/stories/2012/02/02/3421377.htm?site=brisbane.

Please do continue your work helping those with Asperger’s syndrome and those who love and support them and I look forward to reading more about your very important contribution to the understanding of Asperger’s syndrome in girls and women.”

I know, total coolness. :)))

http://www.tonyattwood.com.au
http://www.amazon.com/Tony-Attwood/e/B000APW3XM

Photo on 3-5-13 at 12.22 PM

333: Long overdue…It’s “Official”

How cool is it that this is number 333 post? I loveeeeee the number three! Always have, always will. He is cute and springy and sweet and funny. Number three rocks. And there are three number threes!

It’s like the threes are celebrating the fact that I received my “official” diagnosis!

Yes, indeed…. Who would have guessed, but a psychologist has concurred (very kind man) that it is true, I am Aspergerian.

So it’s official; whatever that means.

Oddly enough, the whole validation of my “condition” was anti-climatic, as I was in a very serene and calm mood during my last appointment.

I kept waiting for the jolt of “Yeah, Baby” to hit me. But alas it never came.

I analyzed this lack of Wow-Factor for quite sometime, and concluded this balance of emotions was a positive and beneficial thing.

My freedom of self is expressed quite clearly in this recent painting called Surrender.

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More recently, three hours last night, and two hours this morning, I worked on this piece. It is filled with emotion and energy for me. This one is called Home.

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Interestingly, when I paint, I am mostly using a paper-towel as my tool. I start of with drawing free-formed designs with a pencil, letting spirit move me. Then I add some paint in globs. Then I rub off the paint and see what starts to pop out. I follow no rules and use odd techniques.

Mostly, I feel like a genius-sculpture waiting for the canvas to speak to me.

I have a unique perspective on images. I see things in my paintings and strongly, to the point of distraction and physical sensations, feel the energy.

I didn’t like this image in my original painting. The shape seemed dark to me, almost evil. It looks like a dead animal or beast. I had to remove this by erasing with water and adding more paint.

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This image really bothered me, too.

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Often parts of my works feel heavy and unfinished, and I have to erase, reapply, and step back. If I see an image I don’t like in a painting, like this one above, of a succubus hooked on to the teddy bear’s head, I have to restart and free the energy. I have to remove the energy vampire, so to speak.

I feel this energy intensely, and feel it is either attached to me, a loved one, or both. So I rework and rework the piece until the energy is released.

I can recognize so much healing during the process, and I become almost hypnotic and lost in my creation.

The painting experience is similar to writing, wherein I cannot use certain colors, brush strokes, angles, shapes, etc. (with writing it is words, sentence structure, rhythm, etc.) without feeling a blockage that I must remove.

For me, everything in life is alive with energy: words, colors, shapes, feelings.

All in all, the art of painting is becoming a soothing mechanism for me both energetically and emotionally.

I am pleased with this new Painter aspect of me: the breaking through of self and displaying of self on canvas. It is another form in which I feel someone might be able to see me beyond the facade of my human flesh/costume.

I still find the creation of faces doubly-daunting, as I cannot grasp faces, not others’ and not even my own. So I am struggling with the releasing of “face.” A concept I find mimics my own personal trials: That of releasing the image of self.

I have a great sense of peace, as of late; partially because I stopped taking this hormone pill that was making me have complex, rapid thoughts (can you imagine!! as my thoughts are already so complex!)…induced hyper-thyroid. But mostly because I have started to listen to my own self. I have started to believe in the magic of the world again. I have started to see that inside of me is so much beckoning to get out. And I have chosen the magic over the misery. Something that is long overdue.

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Aspergers Letter: Be the Change

Dear Sir or Madam,

Thank you for taking the time to read these words.  Please know you are making a difference. My penname is Samantha Craft. I am an educator (M.Ed.) and a mother, and I have Asperger’s Syndrome. I live in the state of Washington in the United States. I am forty-three years of age. I was first identified with having Aspergers in December of 2011 by a mental health practitioner.

Before I knew I had Aspergers, I spent decades searching for answers. I searched for logical reasons to explain my extreme sensitivities, empathy, fixations, imaginings and fears.  A keen woman, I sought out answers through 12-Step, medical doctors, therapists, psychologist, psychiatrists, priests, ministers, educators, shamans, and counselors. Not one person whom I sought out for assistance mentioned Aspergers, because not one person knew how a female with Aspergers presented herself. Many professionals didn’t even know this word: Aspergers.  Person after person assigned me an incorrect or incomplete diagnosis and non-beneficial methods of treatment. For years I suffered, knowing something was “wrong,” but not understanding why.

I am not alone. By no means am I alone. Thousands upon thousands of women have Aspergers and have been misdiagnosed, overlooked, and/or misunderstood. Notably, In these days of advanced technology, this lack of awareness regarding Aspergers is shifting. Today, thousands of people a month are learning how Aspergers in females presents itself. However, a large majority of the people searching for answers are the females with Aspergers themselves and their family members. The word about the female experience still needs to reach the people who are equipped to identify and help this subgroup of women. Particularly professors at universities, teachers in elementary and secondary schools, medical doctors, psychologists, psychiatrists, and mental health care practitioners.

In hopes of spreading awareness, in February of 2012, I began a blog called Everyday Aspergers. I have since been writing for 95 days straight, and will continue to do so for the stretch of the year. My hope is  to present a cohesive presentation illustrating a female with Aspergers. The pages are not filled with troubles and tears, only some: because I am human and my human experience stretches far beyond the one word Aspergers. The pages depict the inner workings of a female with an Asperger’s mind—her thought processes, her deep philosophical prose, her poetry, her story.

My hope is you will choose to pass this link on to a professional, (e.g., grandson’s teacher, sister’s doctor, colleague, university dean), so the many women still searching for assistance and answers regarding Aspergers will have a tomorrow filled with awareness, understanding, assistance, and acceptance. Assistance cannot exist without knowledge. Acceptance cannot exist without knowledge. In choosing to directly send this link to one professional, you are choosing to spread the knowledge and effectively change the lives of thousands of women.

With the knowledge we will forever change the face of Aspergers, with the knowledge Aspergers will no longer be unknown, misunderstood, and/or perceived as a taboo, and with the knowledge we can begin to provide hope and needed assistance, and begin to celebrate our unique gifts, I sincerely thank you. May your day be filled with peace.

Link to pass on:  https://aspergersgirls.wordpress.com/2012/05/03/aspergers-letter-be-the-change/

Sincerely,

Samantha Craft

Everyday Aspergers

 

You may also print Be the Change letter, if all the information remains on the page. Thank you.

 

Resources on this blog:

10 Traits of Females with Aspergers:

https://aspergersgirls.wordpress.com/2012/02/10/aspergers-traits-women-females-girls/

Unofficial Checklist for Females with Aspergers

https://aspergersgirls.wordpress.com/2012/03/31/day-62-females-with-aspergers-syndrome-nonofficial-checklist/

10 Myths about Females with Aspergers

https://aspergersgirls.wordpress.com/2012/03/06/thirty-seven-10-myths-about-females-with-aspergers-syndrome/

Discrimination regarding Aspergers

https://aspergersgirls.wordpress.com/2012/03/13/day-44-the-abcs-of-discrimination-i-will-not-be-made-to-feel-ashamed-of-aspergers/

Day 62: Females with Asperger’s Syndrome (Non-Official) Checklist

I invite you to take a look inside of my book Everyday Aspergers.

Take a look here.

(I just deleted an entire paragraph explaining why I am uncomfortable with self-promotion. I’ll spare you the details!)

Over a year ago, I decided to move my memoir from one agency to another. I made this decision to ensure the paperback was available outside of the USA. Here are ten facts you might not know about E.A. The second edition of Everyday Aspergers : A Journey on the Autism Spectrum can be purchased on Amazon in several countries. It makes a great gift! The new book cover is by a talented autistic author and writer. The pages, of the new edition, have photos and images from my childhood. I added a new end chapter. The layout, pages, and style are different. It’s the same story in an enhanced casing.

https://www.book2look.com/book/KRksrIxTxr

Females with Aspergers Non-Official Checklist

By Samantha Craft of Everyday Asperger’s, March 2012

Everyday Aspergers to be a book in 2016. Join our Facebook Clan. 🙂 

This is a non-official checklist created by an adult female with Asperger’s Syndrome who has a son with Asperger’s Syndrome. Samantha Craft holds a Masters Degree in Education. Samantha Craft does not hold a doctorate in Psychiatry or Psychology. She has a life-credential as a result of being a female with Asperger’s Syndrome and being a parent of a child with Asperger’s Syndrome. She has created this list in an effort to assist mental health professionals in recognizing Asperger’s Syndrome in females.

Suggested Use: Check off all areas that strongly apply to the person. If each area has 75%-80% of the statements checked, or more, then you may want to consider that the female may have Asperger’s Syndrome.

Section A: Deep Thinkers

1. A deep thinker

2. A prolific writer drawn to poetry

3. Highly intelligent

4. Sees things at multiple levels including thinking processes.

5. Analyzes existence, the meaning of life, and everything continually.

6. Serious and matter-of-fact in nature.

7. Doesn’t take things for granted.

8. Doesn’t simplify.

9. Everything is complex.

10. Often gets lost in own thoughts and “checks out.” (blank stare)

Section B: Innocent

1. Naïve

2. Honest

3. Experiences trouble with lying.

4. Finds it difficult to understand manipulation and disloyalty.

5. Finds it difficult to understand vindictive behavior and retaliation.

6. Easily fooled and conned.

7. Feelings of confusion and being overwhelmed

8. Feelings of being misplaced and/or from another planet

9. Feelings of isolation

10. Abused or taken advantage of as a child but didn’t think to tell anyone.

Section C: Escape and Friendship

1. Survives overwhelming emotions and senses by escaping in thought or action.

2. Escapes regularly through fixations, obsessions, and over-interest in subjects.

3. Escapes routinely through imagination, fantasy, and daydreaming.

4. Escapes through mental processing.

5. Escapes through the rhythm of words.

6. Philosophizes continually.

7. Had imaginary friends in youth.

8. Imitates people on television or in movies.

9. Treated friends as “pawns” in youth, e.g., friends were “students,” “consumers,” “soldiers.”

10. Makes friends with older or younger females.

11. Imitates friends or peers in style, dress, and manner.

12. Obsessively collects and organizes objects.

13. Mastered imitation.

14. Escapes by playing the same music over and over.

15. Escapes through a relationship (imagined or real).

16. Numbers bring ease.

17. Escapes through counting, categorizing, organizing, rearranging.

18. Escapes into other rooms at parties.

19. Cannot relax or rest without many thoughts.

20. Everything has a purpose.

Section D: Comorbid Attributes

1. OCD (Obsessive Compulsive Disorder)

2. Sensory Issues (sight, sound, texture, smells, taste)

3. Generalized Anxiety

4. Sense of pending danger or doom

5. Feelings of polar extremes (depressed/over-joyed; inconsiderate/over-sensitive)

6. Poor muscle tone, double-jointed, and/or lack in coordination

7. Eating disorders, food obsessions, and/or worry about what is eaten.

8. Irritable bowel and/or intestinal issues

9. Chronic fatigue and/or immune challenges

10. Misdiagnosed or diagnosed with other mental illness and/or labeled hypochondriac.

11. Questions place in the world.

12. Often drops small objects

13. Wonders who she is and what is expected of her.

14. Searches for right and wrong.

15. Since puberty, has had bouts of depression.

16. Flicks/rubs fingernails, flaps hands, rubs hands together, tucks hands under or between legs, keeps closed fists, and/or clears throat often.

Section E: Social Interaction

1. Friends have ended friendship suddenly and without person understanding why.

2. Tendency to over-share.

3. Spills intimate details to strangers.

4. Raised hand too much in class or didn’t participate in class.

5. Little impulse control with speaking when younger.

6. Monopolizes conversation at times.

7. Bring subject back to self.

8. Comes across at times as narcissistic and controlling. (Is not narcissistic.)

9. Shares in order to reach out.

10. Sounds eager and over-zealous at times.

11. Holds a lot of thoughts, ideas, and feelings inside.

12. Feels as if she is attempting to communicate “correctly.”

13. Obsesses about the potentiality of a relationship with someone, particularly a love interest.

14. Confused by the rules of accurate eye contact, tone of voice, proximity of body, stance, and posture in conversation.

15. Conversation can be exhausting.

16. Questions the actions and behaviors of self and others, continually.

17. Feels as if missing a conversation “gene” or thought-“filter”

18. Trained self in social interactions through readings and studying of other people.

19. Visualizes and practices how she will act around others.

20. Practices in mind what she will say to another before entering the room.

21. Difficulty filtering out background noise when talking to others.

22. Has a continuous dialogue in mind that tells her what to say and how to act when in a social situations.

23. Sense of humor sometimes seems quirky, odd, or different from others.

24. As a child, it was hard to know when it was her turn to talk.

25. She finds norms of conversation confusing.

Section F: Finds Refuge when Alone

1. Feels extreme relief when she doesn’t have to go anywhere, talk to anyone, answer calls, or leave the house.

2. One visitor at the home may be perceived as a threat.

3. Knowing logically a house visitor is not a threat, doesn’t relieve the anxiety.

4. Feelings of dread about upcoming events and appointments on the calendar.

5. Knowing she has to leave the house causes anxiety from the moment she wakes up.

6. All the steps involved in leaving the house are overwhelming and exhausting to think about.

7. She prepares herself mentally for outings, excursions, meetings, and appointments.

8. Question next steps and movements continually.

9. Telling self the “right” words and/or positive self-talk doesn’t often alleviate anxiety.

10. Knowing she is staying home all day brings great peace of mind.

11. Requires a large amount of down time or alone time.

12. Feels guilty after spending a lot of time on a special interest.

13. Uncomfortable in public locker rooms, bathrooms, and/or dressing rooms.

14. Dislikes being in a crowded mall, crowded gym, or crowded theater.

Section G: Sensitive

1. Sensitive to sounds, textures, temperature, and/or smells when trying to sleep.

2. Adjusts bedclothes, bedding, and/or environment in an attempt to find comfort.

3. Dreams are anxiety-ridden, vivid, complex, and/or precognitive in nature.

4. Highly intuitive to others’ feelings.

5. Takes criticism to heart.

6. Longs to be seen, heard, and understood.

7. Questions if she is a “normal” person.

8. Highly susceptible to outsiders’ viewpoints and opinions.

9. At times adapts her view of life or actions based on others’ opinions or words.

10. Recognizes own limitations in many areas daily.

11. Becomes hurt when others question or doubt her work.

12. Views many things as an extension of self.

13. Fears others opinions, criticism, and judgment.

14. Dislikes words and events that hurt animals and people.

15. Collects or rescues animals. (often in childhood)

16. Huge compassion for suffering.

17. Sensitive to substances. (environmental toxins, foods, alcohol, etc.)

18. Tries to help, offers unsolicited advice, or formalizes plans of action.

19. Questions life purpose and how to be a “better” person.

20. Seeks to understand abilities, skills, and/or gifts.

Section H: Sense of Self

1. Feels trapped between wanting to be herself and wanting to fit in.

2. Imitates others without realizing.

3. Suppresses true wishes.

4. Exhibits codependent behaviors.

5. Adapts self in order to avoid ridicule.

6.  Rejects social norms and/or questions social norms.

7. Feelings of extreme isolation.

8. Feeling good about self takes a lot of effort and work.

9. Switches preferences based on environment and other people.

10. Switches behavior based on environment and other people.

11. Didn’t care about her hygiene, clothes, and appearance before teenage years and/or before someone else pointed these out to her.

12. “Freaks out” but doesn’t know why until later.

13. Young sounding voice

14. Trouble recognizing what she looks like and/or has occurrences of slight prosopagnosia (difficulty recognizing or remembering faces).

Section I: Confusion

1. Had a hard time learning others are not always honest.

2. Feelings seem confusing, illogical, and unpredictable. (self’s and others’)

3.  Confuses appointment times, numbers, or dates.

4. Expects that by acting a certain way certain results can be achieved, but realizes in dealing with emotions, those results don’t always manifest.

5. Spoke frankly and literally in youth.

6. Jokes go over the head.

7. Confused when others ostracize, shun, belittle, trick, and betray.

8. Trouble identifying feelings unless they are extreme.

9. Trouble with emotions of hate and dislike.

10. Feels sorry for someone who has persecuted or hurt her.

11. Personal feelings of anger, outrage, deep love, fear, giddiness, and anticipation seem to be easier to identify than emotions of joy, satisfaction, calmness, and serenity.

12. Situations and conversations sometimes perceived as black or white.

13. The middle spectrum of outcomes, events, and emotions is sometimes overlooked or misunderstood. (All or nothing mentality)

14. A small fight might signal the end of a relationship or collapse of world.

15. A small compliment might boost her into a state of bliss.

Section J: Words and Patterns

1. Likes to know word origins.

2. Confused when there is more than one meaning to a word.

3. High interest in songs and song lyrics.

4. Notices patterns frequently.

5. Remembers things in visual pictures.

6. Remembers exact details about someone’s life.

7. Has a remarkable memory for certain details.

8. Writes or creates to relieve anxiety.

9. Has certain “feelings” or emotions towards words.

10. Words bring a sense of comfort and peace, akin to a friendship.

(Optional) Executive Functioning   This area isn’t always as evident as other areas

1. Simple tasks can cause extreme hardship.

2. Learning to drive a car or rounding the corner in a hallway can be troublesome.

3. New places offer their own set of challenges.

4. Anything that requires a reasonable amount of steps, dexterity, or know-how can rouse a sense of panic.

5. The thought of repairing, fixing, or locating something can cause anxiety.

6. Mundane tasks are avoided.

7. Cleaning may seem insurmountable at times.

8. Many questions come to mind when setting about to do a task.

9. Might leave the house with mismatched socks, shirt buttoned incorrectly, and/or have dyslexia.

10. A trip to the grocery store can be overwhelming.

11. Trouble copying dance steps, aerobic moves, or direction in a sports gym class.

12. Has a hard time finding certain objects in the house, but remembers with exact clarity where other objects are.

This list was compiled after nine years of readings, research, and experience associated with Asperger’s Syndrome. More information can be found at https://aspergersgirls.wordpress.com © Everyday Aspergers, 2012 This non-official checklist can be printed for therapists, counselors, psychiatrists, psychologists, professors, teachers, and relatives, if Samantha Craft’s name and contact information remain on the print out.

Other Useful Links by Sam Craft:

116 Reasons I Know I have Aspergers

Another Important List of Traits 

1o Myths About Females With Aspergers