PonderEthereal A La Aspie

I am a spiritual counselor. I do all sorts of healing and talk counseling around all sorts of issues. My specialty though, is awake people. For reference, it’s similar to the concept of indigo children or enlightened people. Similar, perhaps, but different. But before you stop reading for the fear of being inundated with new age frou frou, give me a minute.

I first noticed awake people about seven years ago when I noticed a set of characteristics that I and others in my community had in common. Since then, I’ve been learning about awake people and have been focusing on them professionally for over three.

Just like what you may expect from a group of enlightened people, most ‘awake’ people are very intuitive. Part is a very well honed ‘gut instinct’ and part seems to be an inate ability to recognize patterns of human life at a really high level. Awake people are usually very ‘fast thinkers’ and usually feel as if they are ten steps ahead of ‘normal people’.

But unlike the stereotypical image of an enlightened being, There is nothing glorified or glitzy about being ‘awake’. It’s a way of being that, although makes us more intuitive, ‘tuned in’ and faster thinkers, also makes us ‘overly sensitive’, quirky and almost socially inept, rendering us frustrated and just possibly, a wee bit jaded. Beginning to sound a little bit familiar?

If you were a really super powerful CEO of a super huge company, you would have only so much time to go around (And who knows… maybe you are and after reading this, you will find my research with awake a noble cause!). You would have meetings to go to with bigwigs in exotic countries across oceans and you would have board members to kiss up to and crucial financial decisions to make. And chances are, outside of touching up your golf game under talks of consolidating and buying assets, you wouldnt have much time to say… enjoy being a master metal worker.

And so it goes with awake people. Awake people are wired to be thinkers and feelers… not doers, so much. Awake people are adept at knowing what will come next in a given situation and can easily tell you in great detail exactly what is required to accomplish something in their field of expertise… ad naseum. But not so great at small talk. There is only so much neurological power to go around and for an awake person, that is spent on thinking and feeling.

My hypothesis is that an awake person is wired to be more neurologically sensitive, in turn, making neurological input top priority in processing, in turn, unbalancing their priorities in the eyes of society. In other words, they are made to think and feel and all that thinking and feeling puts someone into a place where they are simply not compatible, socially, with most ‘typical’ people.

Ringing any bells yet?

Interestingly, many of those who match the description of ‘awake’ have also been diagnosed with some form of neurological ‘disorder’. They eventually get frustrated with having, what amounts to an invisible disability. They are able to function to a particular level and compensate for the rest - but get exhausted, depressed and anxious doing so. They often wind up with a diagnosis list of a variety of vague sounding disorders that really, piled together, amount to not a whole lot. Sometimes, they find a handful of medications that help. But always, they wind up with, at the end of the day, the desire to ‘just be normal’.

Crossposted to Trusera

Usually, my son, he just leaves shirts with buttons buttoned at the end of the day. He totally pulls it off over his head so that when he wears it again, he can just pull it back on over his head. And usually, even the shirts without buttons are on backwards and/or inside out. Although, I have to say that it is especially cute when the button-ups are inside out.

Usually, his pants are too big around the waist so that he can pull them down without unbuttoning them. Usually, unless a button is exceptionally easy, he has to have help and usually that is quite embarrassing for a pre-adolescent boy of his intellectual level.

Used to be, his handwriting was absolutely atrocious. He has this kind of awkward way of holding a pencil… reminiscent of a south paw’s over-the-top-of-the-page grip… but with his right hand.

He’s never really enjoyed reading because it was difficult for him. And really, I think it was only ever difficult for him because it required focus and he’s totally a natural skimmer.

The shoes… OH THE SHOES. With the laces. That flop and blow in the breeze. Because they were never tied. Because. He. Refused. To. Consider. That. Tying. Was. Necessary.

I was thrilled Friday to actually observe him in the act of buttoning his own shirt all the way down the front by himself. And he only missed one button - and it was near the bottom so that doesn’t matter anyways. I mean, really… he’s still short. WHO’S LOOKING THAT FAR DOWN?

I also noticed that his handwriting has gotten MUCH neater. It’s clean and legible. However, not only is cursive entirely ridiculously complicated for him, but I’ve had a hard time convincing him of it’s importance. Like him, I’d rather print and never really did adopt cursive. It’s still a struggle to get him to focus on developing it.

He sat down a read a full book not too long ago. Not because he HAD to but because he wanted to. I texted his dad with the good news. Your son… he’s enjoying a book!

I also noticed that although his level of involvement in school has markedly increased this year, the number of complaints home have not. And although that could simply be a grievous error on the part of the school, I prefer to think that it’s more likely learning to function a little better on his part.

He still doesn’t do the shoe tying thing very quickly or efficiently. Stumbling along, only to accomplish something short of barely wishing the two laces would stay together, it becomes a quite complicated ordeal. We opt for Velcro. It makes mom and boy happy and we are content with that.

For the most part, he seems to be catching up with the coordination milestones that were really holding him up and for the most, part, that is a HUGE accomplishment. I’m so excited and proud for him!

But I can’t help but sigh an inner sigh for the fact that he’s quickly coming to the point where he will no longer appear disabled and will need to advocate for himself all the harder.

It’s really hard, for him, a pre-adolescent-very-much-smarter-than-you boy, to say “I don’t understand” or “please help me”. The “please” part, especially.

My son goes to a school in North County San Diego that has been fabulous. We transferred here at the beginning of the 07-08 school year. At first glance, the school looked run down, old, gang infested and just gross. I was about 2 hours from pulling every string possible to not send him there when I found that it was a California Distinguished School. I gave it a shot.

Come to find out, the special ed coordinator is totally well versed with Asperger’s Syndrome. No having to spell it out for her. And this IEP/504 plan process was like second nature to all of them. They had a process and they all came to the meeting knowing what needed to be done and there was no double talk or finagling. The 504 plan team has been wonderful. Compared to the two schools before, heavenly. We have our regular meetings and they give me everything we need. He needed daily notes home - I got em. He needed to be pulled out at recess - I got it. Of course, those aren’t the only two things he’s needed but he’s gotten the other 2,000 things too.

They even CALL sometimes to ask if I would like him to participate in a new thing the school has going on. He’s in a thing called ‘peace club’ which is a group of hard-to-manage kids that meets once a week to talk about handling social situations. Ethan knows that these are all the ‘bad kids’, as he calls them. But in his overly mature 9 year old brain, he also knows that he’s learning a lot and that it’s good for him and so he likes it.

This year, he’s really doing REALLY well. Even with everything that has happened recently, his behavior is staying above board. He’s loving violin. He’s top of his class, to hear him tell it. And I don’t doubt it. He’s memorized everything and does everything to a very perfect T. One of the strong points of Asperger’s Syndrome. He’s in chess club now. Even though he has to be at school 45 minutes early one day a week, he LOVES it. He is up before I am encouraging me to the door to get him there.

Yesterday, we talked about his improvement. I told him how proud and encouraged I am. I told him that I’d rather him participate in things he loves like violin and chess club than to make straight As. It’s growing, learning and loving learning that’s important to me… not grades. I told him how pleased I am that his behavior has held. And the conversation was conscious on his part. He really is groking this whole ‘improvement’ thing. I dig that.

Crossposted to Trusera

In line with the kind of aspie, non-social mom I am, my son has been playing with a boy that is moving in across the street for about a week and I’ve never met him. Quite honestly, I’m more afraid for the kids he plays with than for him. He comes home happy, not angry or hurt - and that’s enough for me. I saw the mom across the street the other day. I didn’t approach her. It’s enough that we are in close proximity and I can scope her out from there. She’s a real normal, nice mom.

Today though, bright and early, at 11AM on the first night/day of uninterrupted sleep I’ve had in weeks, there was a knock on the door. And then another one. And then the doorbell. And again. And no puny knock, mind you. It was a firm, “I know what I’m doing knocking on your door at this time of the morning and I have a purpose” knock. I stumbled from my bedroom to the door with Ethan close at my heels. “There’s someone at the door!” he exclaims. “Yes, Ethan. There is someone at the door.” I stand on tiptoes to look out the peep hole. No one. With all of the ringing of the bell and knocking of the door, there was no one.

Oh! Wait a second! It moved! The dark spot in the peripheral of the peep hole moved! It was alive! It must be a short person of the boy variety! “It’s a child.”, I mumbled to Ethan. I stood behind the door and opened it so that I, in my morning glory, could not be seen but Ethan was in plain sight. And from the other side of the door, there was a lilting sing song voice, asking Ethan to come out and play, that ran down into my very soul, singing without inflection. “This kid is an aspie!” I exclaimed to myself in my tired brain.

They chirped at each other in a language that only aspie children under 10 understand. Ethan asked if he could go out and play. “As long as you put shoes on.” I told him. “In the grassy area or the cul de sac, only.” “I know, mom.” And he was off.

I wandered slowly about my morningness. There was brushing of the teeth and clothing of the body and much growling and muttering. And then the dog… he had to pee. So I leashed him and wandered out into the bright… bright, BRIGHT sunlight, squinting behind my sunglasses. Ethan was across the street talking to The Mom of The Aspie Child Across The Street. When I came out, she noticed me and asked him if I was his mom before doing the big smile, huge wave from across the street thing.

She came over and we talked about the neighborhood a little and this and that, you know. And then I met The Aspie Child Across The Street. Pretty blue eyes surrounded by gorgeous brown skin stared directly over my left shoulder while we met. The Dad of The Aspie Child Across The Street walked as far as the end of the driveway, looked at what we were doing and turned and walked back in a way that suggested that it’s enough that we are in close proximity and he can scope me out from there. Ah. The genetic connection. I talked with The Mom of The Aspie Child Across The Street for a moment more before inviting the boys to walk with me while I walked the dog. Ethan rode on ahead on his bike and The Aspie Child Across The Street began. The deliberate posturing of his hands perfectly accented the run on one sided conversation from one subject to the next. He was dressed in a very soft, seamless sweatsuit and very soft ugg boots. It actually looked quite comfortable. But I bet he wears it even when it’s 80 degrees.

We walked around the grassy area and we ended with him singing me a song from Bible school about sharks eating people. Man, Bible school must have changed since I was last there. There was commentary during the song about who in his family was like the sharks in the song. And then I went home and left the boys to their bike, scooter and skateboard thing.

I didn’t say anything. When I heard the singsong voice from behind the door, I did not stick my head around the corner and go “Oh! You’re an aspie too!”. When his big blue eyes stared off into space while his mom and I talked, I didn’t turn to her and say “He is autistic too?” When The Genetic Connection walked down the driveway, I didn’t say “oooohhh… that’s where he gets it from.” I didn’t say anything.

I expect that one day it will come up casually in conversation. Maybe over tea and crumpets, I’ll casually laugh about my son’s meltdown and she’ll laugh about her son’s aversion to seams and we’ll just know.

Crossposted to Trusera

Honestly, I haven’t found a whole lot of helpful information in books written for those with Asperger’s Syndrome. I prefer to learn by example - which is maybe why, reading a book written for a neurotypical works better for me. There is something to be said for not only gaining the information but figuring out what perspective a neurotypical must be taking on this information from the way the book is written, which then gives me a further foothold.

Communicating Effectively for Dummies (For Dummies (Computer/Tech)) - An excellent book, written for up and coming corporate wanna-bes. It explains what to do when and why from a really basic place, including example interactions. This is a great book for an aspie in a professional environment as it includes jut about every professional scenario you are likely to run into. Not only does it cover the technical how-to’s like phrasing and approach but it also includes bits about how to make it nice-nice so that people like you when you are done saying it. Always a plus. :)

Nonviolent Communication: A Language of Compassion - WONDERFUL book for aspies and non-aspies alike, really. But for Asperger’s Syndrome specifically, it gives a really unique look at what pisses people off when we talk to them and how to not do that. :) It’s got great techniques for learning to listen to what the person is ‘actually’ saying beneath their words, which is invaluable where empathy or the ability to pick up on subtle references might be lacking. And then, once you realize that there is an emotional need in what someone is saying or not saying, often, a person with Asperger’s Syndrome might not know what to do with that knowledge. This book gives methods for responding to that emotional need with words. The style of communicating featured in this book is actually VERY compatible with a person with Asperger’s Syndrome because it really is about dissecting what is said into non-emotional speak and saying things plainly.

Giving The Love That Heals - This is a recent find, on my part. Although there is an undertone of self healing throught the book, I have found, just in my first skimming pass, SEVERAL really helpful tips on how I, as a parent with Asperger’s Syndrome can understand and communicate with my son, who also has Asperger’s Syndrome. The books is written for NTs with NT kids as opposed to being written for those who are on the spectrum. However, It is my personal opinion that with conscious parenting skills, even an aspie kid is cake. This book teaches you how to REALLY be a conscious parent, starting with looking at your self and your own complexes. I’ve already started using some of the techniques, with great results. Every parent can use some help and advice sometimes and this book teaches you how to become your own self help parenting tool.

(Crossposted to Trusera)

As if the word ‘dating’ isn’t enough to strike fear into the heart of any sane, relationship-seeking individual, add to the mix not being able to read or decipher this person at all and feeling horribly uncomfortable meeting new people. Considering the prospect is much like reliving one of those dreams where you get to school only to realize that you forgot to get dressed before you got there. Or that you got dresed but as you got closer to school, your clothes were disappearing, one piece at a time and you could not figure out where they were going, nor could you stop the inexorable liesurely stroll toward the school house. Or maybe that was just mine.

Of all of the human interaction scenarios, the one called ‘dating, is by far, the most painful. The process of selectively speaking to, interacting with and potentially becoming intimate with a practical stranger is as comfortable as wiping with sandpaper. Or the one ply stuff that is surely made out of recycled bricks.

I chose internet dating. It puts a very comfortable barrier of a few screens, a keyboard and a hundred miles or so between me and my prospective date. I know what I don’t like. The guy who’s picture was a scanned copy of his latest rap sheet? The one that lives at home because he quit his teaching career to pursue base jumping? Not so much. So weeding out the super duper weird ones… check.

Then the hard part begins. Having the nerve to even consider the really good ones is a near impossible feat. I have a hard time striking up a conversation with myself in the mirror and I wake up next to me every morning. In the ideal scenario, the first conversation shouldn’t be difficult at all.. it should just flow. But hello, I’m an aspie. Since when has ANY conversation with anyone just flowed. I still have conversations with long time friends that leave them raising their collective eyebrows and giggling at me. Not with me, mind you.

And then, the first conversation happens and hopefully, there are a few more. And then comes the moment when I must explain why my life is structured the way it is. Why I’m so particular about where I’ll go or who I will hang out with or why I’m so ’shy’. Why I like my routine the way I like it and CANNOT BUDGE AN INCH. So I try to say it all in one breath… “I have Asperger’s Syndrome… butdontgogoogleitotherwiseyoullgetreallyscaredoff!!!! Step away from the search engine. Just move your hands away from they keyboard and put them where I can see them.”

And if they make it past that part, then comes The First Date. And it’s at The First Date that I attempt to make the averted eyes look alluring, not disordered. I try to move the stimming down to a nervously shaking foot. I am extra careful not to drone and to use inflection. And to laugh and smile - because those neurotypicals dig the laughing and the smiling. And if I’m lucky, the guy will make me laugh and smile without me trying and he will not mind that I go on about geek things because he likes geek things too. And it will be love at first averted sight.

I will explain then, that I don’t make a lot of eye contact and it’s not because I’m not interested. You can think of it as being shy. And that I’m just a little nervous because I like you so much. And it all just really becomes a part of the charm of the quirky person that I am. If he’s the right one. Because if he’s not, it won’t be his bag and he’ll move along, making the section process that much easier. After all, I’m a busy girl and there is a line forming.

Crossposted to Trusera

This past week, I experienced a personal crisis. It required that I go to the hospital and interact with medical staff. It required that I talk to police officers, detectives, attorneys and a judge. My son had to talk to CPS. I had to fill out lots of forms, and have lots of information at the ready. I subsequently have had to work with several government agencies and this will continue over the coming weeks. There were several things that I found unique about those situations and Asperger’s Syndrome.

Eye Contact : I don’t make eye contact very much with people I don’t know and I rock when I’m in a difficult situation. Add shock and trauma to the list and those symptoms go through the roof. Police are trained to watch eye contact for truthfulness and doctors are trained to watch eye contact for neurological symptoms. I had to be a self advocate in both situations and explain why I was rocking and not making eye contact.

Advocate for Kids : When it was my son’s turn to talk to CPS, I had to explain to the CPS lady before she spoke to him that he has a neurological disability called Asperger’s Syndrome and he is not likely to make eye contact or ‘take’ to her. She was therefore satisfied to sit down and play a game of checkers with him, at his request. knowing that, she was also able to ask appropriate questions about his 504 plan to satisfy herself that we were not relegating him to the care of wolves.

Take a Friend : I needed to have someone with me most of the time to help me understand the borage of information coming in my direction. Take shock out of the picture for a moment. In general, every day life, I’m ok with saying “I’m sorry - could you repeat that? I didn’t understand.” When There are several people to talk to about different complex subjects in a space of a few minutes, it is helpful to have someone else there to listen and keep up. I have a really quick mind - but it unfortunately decides when and how it will focus on a given subject at a given time. It was also helpful to have someone there to remember to tell them I have Asperger’s Syndrome when it was becoming obvious. Neurotypical people were content to have eye contact with the friend and I could just “mm hm” from the sidelines.

Be Organized : With Asperger’s Syndrome, usually, comes a general disorganization of thought. The best way to combat that is to stay physically organized. Every piece of paper I was given, every card, every pamplet went into a folder. Every piece of verbal information I was given was written down in ‘The Notebook’ - a steno pad with scribbled notes everywhere. Later, when things calmed down, I could go back through and try to dissemble the information I had in my posession.

Emotional : I process emotional input very carefully and about as slowly as drinking from a fire hose. When it comes, it comes and I need to be able to just let it go. It was helpful to have a friend there who understood my emotional processing cycle and was able to comfort when I needed it and let me not be emotional when I didn’t feel it. It was helpful to have people there who understand that I don’t necessarily want or need a hug when I cry - and I did have to tell a few people I did not want to hug. When I said “I need my space to hurt”, it was helpful to have that understood and not taken personally.

Sensory : With everything going on in my mind and my body and my life, any sensory input was a total overload. I remember having the lights turned down in the doctor’s office and feeling like walking across the carpet was too jarring. In this particular instance, although being away from the home might have been preferrable for security reasons, other means of securing me had to be found. There was simply no way that, with my sensory profile (my proprioceptive senses are hypo-receptive.), I could have regained sanity in a completely foreign environment.

I think that these things are present to some extent or another in every traumatic situation, neurologically disabled or not. In my own case, it’s easy to say these things in writing as quick succinct facts - but when experiencing them, it was an intense, greuling process that was amplified and made worse by the fact that I experience the world, in general, so differently than the people who are comfortable living in it.

crossposted to Trusera.

I am a Usui Reiki Master Teacher and the originator of Blue Fire Reiki. I’ve been teaching Reiki for 2 years. When I teach, I avoid the metaphysical Frou-frou and try to explain things in a really realistic way so that people REALLY understand (and believe) what I’m talking about. So… I’ll talk about reiki.. but bear with me through the ‘grass roots’ explanations. :)

Reiki is a complimentary alternative healing modality in which energy is channeled through the client to cause healing. When we talk about energy, what we are really talking about is the common ‘fabric’ upon which everything else in the known universe rests. The stuff that isn’t yet measurable by physical means (I have faith in science though - it catches up with metaphysics every now and then!). Different types of energy fall into different places along the spectrum of ‘universal energy’.

Energy is less dense than plasma and less constrained by time and space - but it’s not a magical or supernatural force. It’s entirely natural. We know that energy exists because we can measure it sometimes in some ways. So for instance, when a Reiki practitioner is channeling Reiki intentionally, their hands heat up measurably and there is a measurable increase in EMF from their hands. It would be ridiculous to chalk healing by Reiki up to supernatural or a miracle or an act of divinity. It’s much more reasonable to attribute this to a currently unexplained phenomenon that follows natural law.

Our bodies are built to conduct this energy. We see precedent for this in the study of meridians or ‘energy channels’ in acupuncture and acupressure.

So, based upon what we DO know with theories about what we THINK we know that is supported by what we DO know - here is how Reiki works : At a very basic level, Universal energy is supposed to flow through us constantly much like oxygen does. And just like, if there are blockages in getting oxygen to your body, you will suffer from various ailments, if there are blockages in getting ‘universal energy’ to your body, you will suffer from various ailments.

What a Reiki practitioner does, is makes themselves entirely unblocked (as much as possible) using the disciplines taught them in Reiki training. Once they are unblocked, energy flows through them so easily that they are able to direct it outside of themselves and into other vessels that are made to conduct this energy… humans, animals, plants etc.

As a practitioner, the part of our body that is most instrumental in sensing and directing energy is our neurological system. This is where autism and Reiki interact. It has been my experience that autistic individuals, such as myself, have very sensitive neurological systems which is the cause of some of the neurological ‘imbalance’ that others notice.

Although this sensitivity is a liability in the physical world, when it comes to energy, it has been my experience, that people on the spectrum excel at sensing and directing energy. It makes us incredibly perceptive to ‘less dense than plasma’ stimulus making us oddly VERY intuitive in some ways and great healers.

And of course, I say that from personal experience and my own professional experience. It has not been studied in a scientific arena, that I know of. Intuition, alternative healing and energy modalities are still considered ‘fringe science’, at best, by the medical and scientific communities.

In my own professional experience, very often, neurologically sensitive people ‘escape’ into their etheric bodies during most of their awake time, being more aware of etheric reality than physical reality. This has the effect of ‘disconnecting’ us from our bodies making us uncoordinated or clumsy. It gives us an appearance of being aloof and makes us forgetful or absent minded.

Aside from myself, I have worked with several autistic adults and children with Reiki and other energy healing modalities and the results are often the same. There is typically a ‘gap’ along the spine where energy is not flowing. This ’starves’ the energetic system and disconnects the consciousness from the body. By redirecting energy through that gap, the consciousness begins a slow return to the body. Overall, after a reiki session, an autistic individual is more engaged in the world around them and feels rested and at peace. It’s like a sigh of relief.

When a healer heals with Reiki, they are also receiving Reiki, by default, because it is simply opening up and allowing normal, natural energy to flow through. When I practice Reiki, I go through a brief mental and physical preparation which starts the flow of Reiki energy. From that point forward, it’s like simply floating, which is a very comfortable place to be for me. Surrounded by a very jarring, jagged world, it is comforting to come to a place every once in a while where it feels GOOD to be in my own body.

All of the energy work that I’ve worked with in the past 15 years, including Reiki, has been extraordinarily beneficial to me. If I ALLOW myself to ‘float’ or to be out of my body intentionally, it’s much easier for me to rein myself back into my body when I need to be here. When energy is able to effortlessly travel it’s natural channels through the body, I feel overall less disconnected from my body and prefer to be outside of it less often.

All of that said, Reiki is typically practiced hands on… which can be a huge turn off to anyone on the spectrum. I don’t want to have anyone touching me - much less putting my hands all over someone else. :) With Blue Fire Reiki, I practice and teach a hands off approach to Reiki. For someone on the spectrum wanting a Reiki treatment, request that the practitioner not touch your body during the treatment. If they refuse or say they cannot, find another practitioner who will!

So… I recommend having Reiki sessions. I also recommend being trained to become a Reiki practitioner. Becoming a Reiki practitioner will give you all the healing you ever need for life without the discomfort of having someone else do it - because you can do it yourself! Reiki classes take lots of different forms. I don’t recommend a ‘learn it all in a weekend’ seminar and I don’t recommend getting the attunements without training. I teach Blue Fire Reiki I, II and III in person but I also offer Blue Frie Reiki via online learning which includes full written instruction, exercises and voice and email access to me.

(cross posted to Trusera)

I have been through getting a diagnosis for both myself and my son.

Asperger’s Syndrome was recognized as an official diagnosis in 1994. That means that there are a great many adults who have this disorder who never got a diagnosis. As an adult with Asperger’s Syndrome, not having a diagnosis really sucks. But getting one isn’t necessarily a walk in the part either. Sure, there is a lot of relief. But there is a whole lot of anger and resentment as well as a re-sorting and re-shuffling one’s self and one’s life. Getting a diagnosis for a child is the same process - only on behalf of them instead of for one’s self.

In It’s official, I talk about finally being sure that this ‘thing’ that has plagued me my entire life has a name. For me, it was really important to have a diagnosis, even as an adult. Sure, maybe, at this point, there isn’t a whole lot that can be DONE really in the way of therapies and such - but just KNOWING was so important to me. KNOWING once and for all, WHY I was the way I was was important.

In Coping, I talk about the roller coaster of feelings and thoughts and perspectives on Asperger’s Syndrome as a disability v/s just a ‘different way of being’. It still really frustrates me when someone says ‘oh, we’re all different’ or ‘we all have our quirks’. My ‘differences’ or my ‘quirks’ may seem like ONLY that on the outside but it is truly an INABILITY to be like other people on a very basic level that I struggle with daily. Which makes it a disability - not JUST ‘not fitting in’. Having a ‘quirk’ is one thing. Being unable to maintain my own personal accounts because I can’t have a reasonable conversation with someone on their level is another. Coming to terms with the fact that this is permanent and that there is no hope of ever achieving that ‘thing’ that makes it work is difficult.

On the other hand, maybe it IS just a different way of thinking - and there certainly are pluses so being the way I am. And so it goes with getting a diagnosis… back and forth, back and forth. Unfortunately, I think more people with Asperger’s Syndrome get stuck in the back and never get to the forth though. It’s difficult to see something that seemingly has ‘ruined life’ being a positive. Getting stuck in being angry turns to bitterness and pessimism.

The other tough part of getting an Asperger’s Syndrome diagnosis, I talk about in Self Identity. It’s the process of weeding out the disability from what one thinks of themselves and what one sees the world as. With Asperger’s Syndrome, much of our lives are built around compensating. Eventually, we learn that we are SUPPOSED to do certain things at certain times. We have very elaborate scripts for interacting with other humans that are built upon repetition and learning. Once I knew the diagnosis, I found that even very small things that I THOUGHT I knew about me were actually not really about me but about me trying to compensate for what I didn’t really feel but was supposed to feel. This was a very complicated process of really wiping the slate that is ‘me’ clean and deciding to simply act and react in the ways that feel ‘normal’, whether they are acceptable to others or not.

Had I not already been through this process for myself, when my son got the diagnosis, I would have had to go through much the same process for him. Re-thinking his past and going back and forth between grief that he will ‘never be normal’,relief at having a diagnosis finally and pride in the wonderful things he can do. I hear this from NT parents of AS kids all the time. And much like those of us who are diagnosed in adult hood, many parents get stuck in the grief part and it becomes bitterness.

So, when my son was diagnosed, I had already gone through it for myself though and had already come to terms with the fact that it could be a positive thing. In Diagnosis Made, I am purely delighted at FINALLY having a diagnosis for him and I think actually, a bit pleased that it was Asperger’s Syndrome - something that I felt like I could help him with.

So while not having a diagnosis can make like a lot more painful than having one, getting a diagnosis is a process much like grieving that needs to be given it’s own time and consideration.

cross posted to Trusera

Sometimes I look back at my blog and I’m so glad that I had the presence of mind to write some stuff down. When I look back over my past entries … before the AS dx, I’m again, glad that I wrote it down as I went because otherwise, it might be too easy to wash away all the ‘not knowing’ in the glow of the ‘knowing’.

For the first part of my life, I was just a badly behaving child. The intricacies of what it is like as a kid on that side of things - and what it’s like struggling to parent an AS kid, i’ll save for another post. However, there was some point during my life when I started to notice that i was different and started to willfully struggle against it. Not just different in that I listened to different music or wore different clothes - but fundamentally different in a negative way than every other human surrounding me.

When I was 19, it occurred to me that I just didn’t feel love the way that other people felt it. I mean… I felt love, I guessed. I left it, sort of. I knew I loved. But I didn’t FEEEEEL love. That realization, among others, sent me on a wildly careening introspective journey through the next 10 years of my life.

Every moment of every day from that day forward, I would very carefully navigate my thoughts and my feelings and decide what seemed to fit and what didn’t. I unearthed lots of past issues and healed and fixed and changed things in my life that I didn’t like. And eventually, at some point, decided that the sum total of me was no longer a result of past events… but that there was SOMETHING ELSE that I couldn’t quite put my finger on.

In 2002, I started dealing with the General Anxiety Disorder that had plauged my life for so many years. In that post, in retrospect, I am able to see the thought patterns of constant compensation of Asperger’s Syndrome. How plotting out every single action and every single word and worrying and fretting about each one made me an anxious mess. Then, though, even identifying General Anxiety Disorder was huge. It was a pattern beyond my past. It was something that I could actually start addressing that would make an impact on my every day life.

Finally, again, though, I was left looking at the outline of something I couldn’t identify. Like looking at the negative of an image. In
The Tree, I struggle with that identification. Of knowing there is something bigger but not knowing what it was. In My Head is an attempt to sum up the things that seem to fall inside that negative image. Finding Carrie was posted just before the diagnosis.

I remember those years as feeling very lost. Very aimless and hopeful somewhere in a black abyss of everything in the world in which my hope could not possibly land on anything. The few times I’ve had the opportunity to talk with someone pre-diagnosis, I’ve encountered a similar sense. With AS, the very thing that makes us ‘not normal’, makes it impossible for us to see what ‘isn’t normal’. It would be like a blind man needing to SEE that other people are SEEING in order to understand his differences. It is a sense of frustration that just loops back upon it’s self over and over and over.

The thing about someone in this situation - where they have dealt with a disorder or illness for their entire lives without ‘help’, is that they are USED to swallowing it down. When confronted with the fact that they might have something going on that could be diagnosable, often the reaction is, “I don’t know why I should bother… I’ve just always been this way.” I remember even in dealing with very deep, dark, painful depression, saying that - and I’ve certainly heard that sentiment from others. Someone who has dealt with something like AS their entire lives doesn’t realize that there is a way to not have to ‘deal with it’ anymore and to actually THRIVE with it.

I think that self blame is the culprit for looking at the symptoms of any disorder as a negative reflection on self. Where AS is concerned, because the symptoms make the person socially unacceptable, if there is no dx, self loathing is inevitable. There is shame and guilt and not being able to measure up and not cutting it and being some sort of horrible monstrous excuse for a human. When a dx happens, suddenly, the need for self blame goes away. It’s not anyone’s FAULT anymore. It just is the way it is. The magic in a diagnosis is simply knowledge. Knowledge that everything that has ever happened before that is attributed to this ‘thing’ is not the FAULT of it’s bearer. Having that knowledge rolls back the guilt and the shame and lets the person move on being who they are at their core.