Sensory Issues

The abstract for Intense World syndrome is is so incredibly validating to me I just about cried.  I probably teared up. I don't think an abstract has ever made me cry before. The thought was, "finally".

It's not about fidgeting/repetitive behaviour/stimming/flapping/twirling/whatever.
It's not about lack of making eye contact.
It's not lacking emotional empathy.

In my estimation, based a lot on what autistic people have written about themselves, many of the common external signs of autism result from an overwhelmed sensory system.

Not all of autistic stuff is sensory processing, but I venture a guess that a lot of it is. And I venture to say that at least a few people who might sit in the camp of mourning the loss of Asperger's Syndrome might also argue that they aren't like the people who had an autism dx rather than an Aspergers dx. However I often identify strongly in the other direction.

- since autism 'lines' [of severity] can't be drawn around IQ, nor around functioning (google some critiques of the functioning trope to understand that), I propose those lines aren't really possible to draw in any meaningful way.

- sensory processing is a thing we all do, is a neurological and nervous system (or whole system) kind of thing. If a person has a divergent system for processing external information, so much of that is a 'fish in water' kind of experience. My sensory issues weren't at all apparent to me. Until I got tested by an audiologist and had a consult with an OT.

- this is purely speculative, but based on sensory experiences communicated by my peers who maybe also get labeled as more severe than me or whatever -- may other-verbal, or do more stim stuff or self-injury or have more meltdowns and in different ways than me -- that I would be doing those same things if my sensory integration issues had the volume turned up on them. In other words, I can handle some time in a grocery store. But for someone who doesn't handle that as well, I think much of that has to do with being more affected than me by the fluorescent lights or the noises or the smells, temperatures, etc. Even if the experiences aren't exactly the same, there is the same root at play. Sensory. Not behavioral.

- communication frustration is a huge part of why I may self-injure (severe or not, overt or covert), why I may yell, why I may fail to respond to the person I'm talking with. Feeling misunderstood and stymied in communication is so terribly frustrating. I can imagine that if I more frequently got into non-verbal spaces, or was always that way (because verbal speech production and cognitive understanding are not the same thing), I would be even MORE frustrated. I would be less understood. Fewer people would even be making the effort to listen. Especially if those communications weren't even verbal in the traditional way. (I could ASL as a legitimate Lternative to speech, but AAC is probably even more viable, and for in either case where motor skills affect the use of these, assistance with producing communication is a highly viable path to someone having agency with their voice)

- so. The world is a disorganized, highly intense place. What if the emotional empathy Rachel Cohen-Rottenberg talks about is so very present, but the cognitive production of an empathic response being interfered with (by internal sensory and communication challenges) as well as outside disempowerment) --

Then we are less broken than imagined.

and all those parents claiming that kids who are nonverbal and hitting themselves or whatever are so different than those of us who can write, or talk, or have a cogent argument that challenges their -- or rather discomfort with another way of being -- there is no possible chance of helping.

But if there is a way to understand about sensory issues and communication (organization, and the connection between nervous system integration and cognitive organization) -- it may be possible to address some of the side effects that allistic (non-autistic) people cite as non-empathy or the behaviors that manifest in a lack of social support for autistic people.

Having sensory integration issues and communication issues (that are tied to those sensory issues) is difficult for me, and if the volume were turned up on those issues I think I would have the manifestations of what DSM V calls more severe/lower functioning.

Therefore, the DSM change makes sense, insofar as it has included sensory issues in the realm of ASD. That connection was sorely missing before. I think we need to explore (and research the heck out of) what these sensory systems are doing in autism, how these sensory differences can have multiple causation factors including environmental and genetic, and take those of us with perhaps less severe manifestations of sensory issues and challenge/push the sensory system, in research settings, and study what happens. Study what that does to cognitive processing. Understand better how gut and immunity and cognition and communication and sensory integration aren't all separate.

This post is long and not well written or cited or linked or anything. Don't shoot me (that's what the next post will be about). It's just a mash of my thoughts on why its okay there's no Aspergers anymore. Those people who didn't get the privilege of an Aspergers label? They have been more disadvantaged than me, in a lot of ways because of systemic abuse and other barriers, but I'm not so different from them. I can feel that in all the circuits of my highly empathic nervous system.

social vs socially awkward

The scope of this post is mainly about employment and Aspergers.

The Social Aspie kind of breaks the stereotype, but oh well; I think many people on the spectrum (maybe all of us) actually do want to connect with people, it's just difficult. I think there's a difference between being social and being socially awkward. And there's also a difference between being social and being extroverted. I'm an introvert. But I care deeply about people and I want to connect with them. I just have trouble doing so.

Employment can be tricky. Barbara Bissonnette of Forward Motion sent out her Aspergers and NLD newsletter today and it was about how only about 20% of skills that count in the workplace are hard skills and 80% are the interpersonal soft skills that help us get along and get things done in the workplace. Temple Grandin, among others, cites certain jobs as better for those on the spectrum; one of the jobs usually on the "not great for spectrumites" list is retail/cashiering.

While I tend to agree, I work in retail and can share some of the positive things about my experience. I never thought I would be good in a retail setting. I briefly worked at a jewelery store (one of those cheap jewelery franchises), and I hated it; I didn't like interacting with the women and teens who came into the store. I found processing credit card transactions stressful, and there were so many little things to try and keep clean. I've never been a stylish person, so I couldn't get excited about fashion accessories. It was horrid, and I lasted three months.

Aside from another stint in a department store restaurant where I worked as a cook behind the scenes, I've stuck mainly to office temping and factory work. I enjoyed the factory because it was repetitive detail-oriented work and there was no interacting with the public; I could wear comfortable clothing and a smock.

When I moved to Boston, I couldn't work for a while. Once I could, I considered going to a temp agency to work in corporate office settings but the more I thought about it, I realized that I really didn't like that environment. The office politics always felt too intense for me; I had to wear clothing that was uncomfortable, and I just felt like I didn't fit there.

One day I found myself at a outdoor gear retailer and on a whim, inquired about job opportunities. I love backpacking, hiking, cycling and kayaking, and I thought this might be a good place. I got hired there. It's on the Fortune 100 Best Companies to Work For. Their benefits are great, and it's a good work culture; the people who work there are generally passionate about the outdoors, and just all-round good people. It's not your average retail sales job.

I work as a cashier. Cashiering is challenging, and I think people on the spectrum are potentially challenged by this type of job in a number of ways, and maybe my experience isn't really representative of anyone else, but I figure it's worth sharing...

The Challenges
- The job involves a degree of multitasking that is challenging.
- The environment can be noisy and chaotic at times. Enter screaming baby.
- Difficult customers/conflict can be really challenging
- There are many complicated things to remember/learn about operating the cash register, and policies/procedures that, while documented, need to be applied appropriately.

Suitable Aspects
Good for someone detail-oriented and who is good at being accurate. I'm meticulous about doing the job properly, but it's made clear to us that most any mistakes can basically be undone, and we're not punished for making them, we get corrected and it's a learning opportunity.

This is key -- there is a kind of prescribed formula for interacting, a role if you will, which can make this less stressful than an open-ended interaction like in an office. Effective cashiering kind of involves guiding a transaction from start to finish; Greeting, ringing, providing information (like a particular discount is being applied here, etc), and finishing the transaction by taking payment, and a farewell greeting (Have a good day!). In other words, there is a basic script that one can follow, which helps reduce the stress of the interaction.

Benefits
There are some things about customer service that I really feel have benefited me. A few of these may be specific to the company I work for, perhaps, but are still relevant in a broader way.

I have an employer who supports diversity in the workplace, and I have an accommodation plan with them. I provided a letter from my doctor and they have worked with me to identify areas that I need support in - for instance, there is one cash register by the door that is supposed to be staffed at all times, but it is more challenging because people are always approaching that end cashier to ask questions, so it requires more multitasking. I have an accommodation that I don't work that register, because when I try to do that one I make mistakes when I normally don't make mistakes. I get overloaded and stressed, and my employer is fine with having me manage this by avoiding that register.

I have the opportunity to interact with a large number of people in one day, but within parameters that I can handle (because of the script, or prescribed role I can take). Now that I am fairly comfortable with the basics of taking payment for someone's purchase, I can interact with them to the degree I feel comfortable. If I'm more overloaded that day, I can simply ring stuff up and say only what I need to, but if I feel more social I can ask them questions about their upcoming backpacking trip or vacation, or tell them about a piece of gear they are buying that I have experience with.

When conflict arises, like if a customer is complaining or is asking for something I don't know how to handle, I have supportive managers I can ask for help. They are always willing to answer my questions. The return policy at this store is very liberal, and I generally don't have to say no -- this makes the job much more enjoyable. I am given all kinds of tools to give great customer service, and I rarely have a customer leave me feeling dissatisfied.

I can practice being friendly and receptive; I notice, for instance that when I make eye contact with the customer, the interaction is much more positive and friendly. It's really damn hard to do, but cashiering offers a low-stakes way to practice getting used to doing it. My job involves a tiny bit of sales, but there's no pressure with it, and I find that when I apply more or less effort I get results. This has been a great growth experience, and one that offsets my experience at that crappy fashion chain.

I get to experience interacting with ALL kinds of people. I meet laid-back Californian climbing buffs, bratty moms with their bratty teens, controlling middle-aged women who are addicted to shopping, scruffy city public works employees, police officers, military base personnel, extremely rich Boston executives who are weekend warriors, old hippie couples who are getting back into hiking, and lots of parents buying their spoiled kids The North Face Denali jackets. All kinds. Nice people, rude people, controlling people, prickly people, crabby people, super-positive friendly people, gay couples who aren't sure how I'll treat them, type-A runners, closet yogis, health freaks, alpine backcountry skiers, exhausted new parents, twenty-somethings getting ready to hike the Appalacian trail, ladies looking for a sporty 'cane' to help them walk after surgery. I would not get this in an office, or a factory. This offers mini-lessons in human nature and how I do or do not handle these different personalities.

I get to learn that how an abusive person treats me, a random cashier they know nothing about, has nothing to do with me because I'm treating them the same way as everyone else. I learn that the person who may seem snobby and inaccessible is actually a really down to earth person. I learn some people really are maybe-gangsters who pay with giant rolls of 100s. I learn that many people walk around anxious and when I am relaxed and I interact with them, it's a mirror for me how much I can be difficult to deal with when I'm anxious.

In general, I feel like cashiering is a training ground for social skills. There are a set of rules, which makes the interaction less stressful, but there's also plenty of opportunity to practice small talk and also how to handle different personalities. Because the workplace empowers me to do what I can to provide good service, for the most part interactions are positive, but the odd time when there is difficulty, like if a credit card gets denied, or someone wants something we cant do, or someone is being unreasonable, I learn assertiveness skills, or through my manager, learn how to handle that situation assertively.

I think it definitely helps that I have disclosed to my employer and have an accommodation plan. My six-month review was excellent. I exceed expectations, and my manager said, "Don't go anywhere". :)

For someone who is social but socially awkward, has sensory processing problems but can manage some degree of sensory bombardment (as long as they get downtime too), retail employment with a supportive employer may be accessible. It's not for every person, NT or spectrum, and I'm not even suggesting that it'd be a great thing to do long-term (it also doesn't pay very well). Some people could handle it. They may be struggling to find a workplace that can accommodate them, and dismissing retail jobs completely for all people on the spectrum may be robbing some of us of both opportunities for viable employment, and a space to practice valuable soft skills.

Fortune's Best Companies to Work For (retail)

A Circuitous Route to Language

I've yet to research this, but in therapy yesterday I came across an interesting insight into my thought and language process: sometimes, when I want to recall something I want to share, I need to go "the long way" through a series of steps that get me to the point.

For example, J asked, "Tell me again what that idea [you shared yesterday] about the weekend was?"

In order to tell him, I will think and say something like, "So, as I was telling you yesterday, because I have been feeling lately that we aren't getting enough exercise, I was thinking about maybe this weekend going bike riding".

This is a theoretical example (and may be understating the way I do this), but it does convey something about my speech and thought process. I actually need to start where I started, and reiterate the thought in almost the same way I shared it before. If I don't do this, I can experience a kind of "speech impotence" where I just. can't. get. words. out.

From the point of view of people with "normal" cognitive processes or speech abilities, I used a whole lot of extra words to take a long time to "get to the point". It may be entirely frustrating to listen to me, with all my redundancies and circuitous speech.

Interestingly, I can be more "clear" with the lights off, and with some grounding physical contact. I've noticed that some people with AS close their eyes when they speak. This could be an adaptive strategy to reduce input. As annoying as it is to listen to someone who has their eyes closed and therefore is taking in no information about their listener(s), I can see how it'd be useful if the words just aren't coming as fluidly as I wish.

I'm not sure what this circuitous language process is called, but my therapist said she has known other people who do this kind of thing, and at this point, I can't change it but can develop strategies to deal with it. In the meantime, I hope the people around me continue to have patience as I take "the long way".

Parents, fishbowls, and sledgehammers

I attended and presented at the AANE Making Connections conference. The audience consisted of adults with AS, family of adults and children, and professionals.

The conference included a lot of interesting stuff. I attended a talk by neuroscientist John Gabrieli from MIT, who talked about some of what they've discovered about autism and the brain, what fMRI studied do and do not tell us about brain activation, and some results of specific studies. He talked briefly about one study that I participated in, but there haven't been enough participants to provide data. (If you are able to go to MIT to participate in fMRI studies, do it! You get paid and it's a couple of hours of work and sensory stress, but it's otherwise painless.)

I also participated on a panel called "Dating and Relationships". It was interesting participating. I shared my experiences. Another couple was also on the panel. It was a good experience. A lot of the questions from the audience were people asking specific advice about dating and issues for people with AS. Like how to approach dating, how to tell when someone isn't interested, or is interested, and how to make decisions regarding relationships. I am told I answered some of the questions well, so that was positive :)

I also chatted with a mom of a tween girl who was interested to hear about my experiences growing up. I have talked with parents before. In general they are anxious about how growing up will be for their daughter, and what the possibilities are. They want to hear about my experiences of university, and working, and relationships. I try to tell about both positives and challenges. About how I experience the world. My opinion that much of the challenge in autistic spectrum is at its root, about sensory processing.

My encounters with parents, in other words, have been generally positive. I think I can tell where they're coming from, their motivation to help their child, and wanting to hear from an adult who 'made it through' the child and adolescent and young adult phase. I think I present the "right mix" of hope and struggle, at least for parents of kids with the Aspergers label. Like, hey, my executive functioning is in the toilet, I have expressive/pragmatic language difficulties, experience overload, have an auditory processing disorder, and have rewarding relationships but am challenged by some aspects of that. I guess, though, I function in the world. More or less.

On the flipside, I also experienced a kind of "fishbowl" effect at the conference. Lunch tables had signs on them, which allowed people from different groups to connect -- families, professionals, adults with AS. I sat at one of the latter tables. At one point, a man and his sister came over to sit down, and she did not have AS. At first it seemed like not a problem but then she started asking questions of some of us. Maybe her brother doesn't live independently but she started asking one fellow questions and seemed very surprised that he lived on his own in an apartment. Then she started grilling another woman at the table. An acquaintance of mine took exception to this and said very assertively that she was uncomfortable with how this woman was acting at a table that is clearly labeled as being for adults on the spectrum, that her presence is being tolerated, but the way she's treating us isn't nice.

My non-confrontational-avoidant side kicked into full gear and I stayed silent. I saw my friend's point. It made me really uncomfortable. That, combined with people mulling around with their plate of food, figuring out where to sit and seeing the "Adults on the Spectrum" sign on our table and shooting looks at us that were discomforting. Actually my friend saw them more than I did, because I wasn't looking (in my usual obliviousness combined with already being overloaded).

In the buffet line, my friend and I were chatting about various things and some of the ladies in line (not spectrum) were giggling, I think because they found what we were saying funny. It was funny. This made me a bit proud; we tend to have a quirky, ironic sense of humour.

from withinmybox.com

But the fishbowl feeling was very striking; it's like we as adults with ASD were specimens, or objects of inquiry. It was like the joke about people with ASDs disappearing when they reach 18. We were suddenly there, in the faces of the people who think about kids with ASDs all day long, and used to encountering ASDs in children with a child (accented with the influence of ASD) understanding of the world. Here are full-grown adults. It's like they have no framework for us.

So I can somewhat understand the staring. My tendency is to want to reach out and make those looks an inquiry, understand them as a hesitation to ask, but coming from a desire to learn, rather than a derision, skepticism, or scorn. I want to provide a framework for adults where none exists.

Maybe I haven't experienced the lash of parental invalidation enough, the kind where they say you don't act like my son/daughter, you make eye contact, you don't seem ASD enough therefore you can't speak about it. (see this video for a great account of emotions, "passing", and invalidation) At least I haven't experienced the last part of that. I have gotten "I wouldn't have guessed you have Aspergers".

My mental response to that is, well, okay, fair enough, because you don't see all the coiled up tension and anxiety and confusion and the way my friendships and marriages stumble, the way my mind works, the messiness of my house, the potential of my mind contrasted with where I've actually been able to get to.


So I haven't felt the need to use the "sledgehammer" with parents or other NT people* who don't live with ASD as a first-person experience. But I can understand why some of my peers have to wield the sledgehammer.

Which leads, I suppose, to another potential topic: Why I Have Hesitated to Protest



*I am aware that not all people who identify as parents or professionals first, are NT.

another step on the diag-onal

I now have had an OT assessment and speech therapy assessment. Both were quite brief insurance-purposes evaluations, but for a $20 co-pay, that's pretty darn good.

The OT came first. They confirmed that, as suspected, I have some sensory processing issues, mainly sensitivities, and that while auditory processing is a biggie, so is tactile defensiveness. We'd work on both of those if I did therapy. I haven't gotten the written evaluation. But, I did leave with a surgical brush to start the Willbarger protocol. It has to be done every two hours for two weeks, which is pretty demanding, but I am committed to it. I have set an alarm on my phone to go off that reminds me, but I sometimes turn off the alarm and space out for a while. I missed at least one session yesterday, and kind of one today, but I'm getting there... it's a tough thing to manage when one has executive functioning difficulties.

The speech evaluation was interesting. I have definite challenges with working memory and what is called 'social pragmatic' speech. That is, using speech in everyday conversation, perspective-taking, and understanding the meaning of non-verbal cues, tone of voice, etc. She'd also work on executive functioning with me.

Overall, the evaluations were helpful for clarifying some things.

change and acceptance

I was talking (on the eviol phone) to my guy (fiance! we'll call him J.) last night, and we were talking about acceptance and change.

(note - we're long distance, cross-[US-Canada]border and working on not being)

We both went for an initial consult at an aspergers clinic when he was in town. The specialist I saw was talking to us about acceptance and change. What about me and aspergers do I/he/we want to work on, and what is it that we accept as the way I am, and work with? Important question, and one I have a hard time answering.

In "The Way I See It" I recall Temple Grandin writing about how sensory issues, while not specifically in the Diagnostic Criteria (perhaps because it is not externally verifiable?), is one of the main problems for autistic people in day to day life. In other words, it affects functioning day to day in a striking way. It can be the root of a lot of behaviour seen in autism. She is not the only one I have encountered who sees autism this way.

Yesterday was a long, busy day, of teaching yoga and working at the studio front desk for 6 hours. Interacting with lots of people. Bright sunshine. Constant music we're supposed to pipe in. Incense that I like to burn to create a "mood" but that overwhelms me somewhat. Cold air, temperature changes. It caused what I consider very common for me - a sensory overload that doesn't create a meltdown, but taxes me almost to the edge of one, but I don't fully realize I am that close. A kind of collapse into exhaustion can sometimes preempt a meltdown. I haven't learned my patterns yet. It feels unpredictable. I think as I learn my triggers, I will have a better sense of this.

So last night I was talking on the phone after working. I got in bed.. under my weighted blanket which had helped me settle so well the night before. My body was absolutely crawling with sensory "bugs" and I couldn't settle, my body was aching and buzzing and itchy. My pants were hiking up to my knees, shirt didn't feel right, blankets weren't sitting right, and I was cold. Cold is a big problem.

I took a step back. As often happens on the phone (auditory channel) I was doing mostly listening and little talking. I was listening to J, curled up in a ball, scrunching my face, body tense, holding my head, pressing into my eye, squirming, frowning, and generally just spazzing out. And I realized something. From the outside, I looked totally distressed. I was somewhat losing my ability to listen to what J was saying, but I was still present, and yet, I knew that if we were not on the phone but in person, J might have reached his limit long ago, reading my body language - my emoting - as totally distressed with what he was talking about. I would have been completely failing to show him that I was listening and actually interested and motivated to hear what he had to say in that moment.

Because my body wasn't letting me. Because however much I was trying to make his speech the primary focus of attention, my body wasn't letting me.

My aspie sensory stuff is, I will assert, significant but comparatively mild to some people's sensory defensiveness.

And this is where I spill over into political anger at the lack of understanding about this autistic experience of sensory disintegration/overload: when you read what I am describing to you, (as an NT, if you are reading, or as someone who experiences some version of this)... and you extrapolate and intensify this experience I describe by a factor of 100 ... does it make ANY SENSE WHATSOEVER that an autistic person would be trapped in that, literally unable to attend to external (social) information, let alone emote appropriately?

Seriously.

J and I gained insight from this sensory moment in a number of ways:

• He got some perspective on just what I was going through at that moment, and got a better sense of past instances where I seemed to be disturbed, and how he might've wrongly interpreted my behaviour
• It further clarified how much it is important that the both of us work on getting me physically comfortable in order to socially interact. If I am in such discomfort, it may be highly frustrating to try and have an important conversation with me
• What I am emoting isn't necessarily what I'm trying to communicate to the world. And this more generally means that when I interact out in the world, people aren't "getting" me. I may have a frown on my face and that has nothing to do with the person I'm dealing with but they may interpret my facial expression as related to them. Oops. Not their fault..
  

Sensory integration is workable, because neurology is plastic, meaning changeable. If I am right that reducing sensory defensiveness and disintegration means I can attend to social information better and emote less discomfort that gets misinterpreted, then some of the social issues can be worked on with a little less effort because learning can actually take place. If I'm freaking out in my body, it's kind of hard to learn.

There's a TON more I could write about this. Acceptance, as my specialist suggested, is important -- I need to, J needs to, accept my experiences as valid. Accept that this is where I am right now. This moment. The next moment.

Because while it is helpful to know what can be worked on and what is "intractable" about being aspie, I firmly believe that unless I can reach acceptance, I will not be able to change what can be changed. Because in trying to change it I won't be coming from a place of awareness of where I am at. Learning happens best when it stretches a person comfortably, a bit at a time, without so much effort that exhaustion and frustration ensue.

It's exactly like yoga, actually.

If I approach the problem with a lack of acceptance, I am actively resisting, not relaxing into the place where I can really be open to the lesson. The lesson may not be appropriate at that time. I will be less flexible. My mistakes could hurt me (cause a backwards movement in progress, whatever that means). It won't be fun. That's right, it won't be fun and I won't want to practice what I'm trying to learn. It will be too uncomfortable.

If I don't accept something, I can't open it up and examine it, therefore I cannot really change it because I haven't delved down to discover the root of it.

So I could try to force myself to learn social cues, body language, how my face is supposed to feel when I want to convey happiness rather than pain. But if I'm feeling pain, it's a lie. If I can't focus enough to comfortably take in social information because of sensory overload, I will literally suck at doing it. I will have trouble learning the lesson, I will fail, and I may be convinced that I just can't do social.

Temple Grandin has made huge strides in how much she can function in the world. This is externally verified (see foreward in her latest book). She says clearly and strongly to autistics that they must work on things and overcome many obstacles in order to succeed.

As much as acceptance by NTs, as much as a neurodiverse perspective is necessary, as much as no one who experiences being autistic chose it, and as much as any of us like who we are (and we SHOULD like who we are!), being in the world requires certain things. Grandin asserts as well: change what can be changed. That is the path to greater success (and I would say more importantly, less suffering) in the world. Define success as you want, but take control of everything you can take control of.

Be where you are. Be open to being someplace different. And breathe.

personal and political

I prefer to write from a personal, "I" statement place. I shy away from extrapolating into more political discourse, not because I don't enjoy it or find it necessary, but because ... it is so informed by my personal experience that if I am challenged in a political way I *feel* it as a personal challenge, even though intellectually I know the person isn't necessarily attacking me personally. Or maybe they are.

I had some thoughts last for a post that tread into the muddy waters of neurodiversity and acceptance, neuroplasticity and change and success... and my thoughts were primarily generalized and I think they would be provocative in some way.

Not that I have a huge readership, there are "those people" who come out of the woodwork, finding these posts through twitter, or a google search, and decide to pseudononymously (sp? thank you CBC's Q for the concept) dive in with all their assumptions, and the I feel compelled to pick at the "knots".

There is a definite risk/challenge in speaking out politically, speaking "for" a movement, heck -- having an opinion!

So I tend to choose speaking for myself only. I will choose exploring the grey things instead of being forceful about things I don't always feel confident I have any authority to speak about anyway.

But I will say -- the personal and political are intertwined. It's not arguable as far as I'm concerned. It's why it gets so heated. It's why there aren't clear answers.

And it's why I'm actually committing a political act by using "I" statements and sharing my personal experience.

being dismissed

[there is profanity in this post. you have been notified.]

well. it's coming from more or less close people including family. dm sharing friends' comments about how a specialist in AS would OF COURSE diagnose AS. just like a psychiatrist would find something else, a naturopath would find candida, some other allopathic dr would find something else. that a more generalist would be better at identifying the "real" problem because they aren't looking for one particular thing. the thing they make money at treating.

bullfuckingshit.

a. the people i went to are aspergers specialists. they see many many people, kids and adults alike. they see THE DIVERSITY out there.
conversations i've actually had with doctors:
me: aspergers is being considered /ive been diagnosed with aspergers
dr: oh, ive worked with aspergers people before, you dont have aspergers. it's getting overdiagnosed. like ADHD
me: how many people with aspergers have you seen in your practice?
dr: a couple of patients
me: how old were they?
dr: they were kids
me: what gender were they?
dr: male

b. if the specialists -- who are publishing studies, developing diagnostic tools, releasing a book this year, advising organizations about autistic spectrum issues, and even more specifically doing this work regarding adults, and they care one iota about their reputations, why would they overdiagnose?? why would they want to invalidate their livelihood? they aren't fucking tarot card readers telling everyone who walks through their doors that they have incredibly special energy that connects them to the universal vibrations in a powerful way.

c. the preconceptions and stereotypes are so rampant in the general medical community, many people with aspergers or other subtle enough neuro issues are being ignored, actively dismissed, and untreated, left to suffer. 'hey doc, i have trouble hearing and am really sensitive to sounds. english often doesn't sound like english. i can't really have conversations in groups of more than one other person. im considering some kind of auditory processing problem' ... 'no, well auditory processing disorder is a developmental condition'

 FUCK YOU!!!!!! 

d. the general public. holy crap, autistic people are popping up EVERYWHERE! this is excessive. you are normal, why are you doing this? to quote another pdoc: 'you just want this [diagnosis] as an excuse to not have to change' (translation: accept that you're borderline - that is why you want this excuse)..

it's dismissed as hypochondraism, it's sort of the old "not autistic enough" problem (see http://ballastexiste...tics.org/?p=579). what are you, inside my body? did you follow me around when i was a kid? do you even know how i was bullied? do you see my stimming in private? am i not autistic enough because i can control my stimming most of the time in public?

"more functional" people water down the condition, so if people think aspergers is "me" then their more "severely" aspie/autie kid won't be understood. their difficulties are somehow invalidated? maleungulatedung.

and of course, aspergers/autism stops when you reach 18. and new issues dont come up as a person ages. and getting diagnosed as an adult is BS. and making eye contact rules out a diagnosis. being able to interact with less awkwardness in very specific interactions rules out a diagnosis. having any NT skills, which, as an undiagnosed person growing up i had to learn, ON MY OWN, and only partially succeed.. well that rules it out too. you can't have adapted at all, since neurological conditions are permanent and unchanging. and being able to do something, but sometimes not being able to do it is just deliberate 'performance'.

and you can't be. because you have empathy.

maybe my family will never accept it because it touches a nerve (um, maybe they have aspergers?)
i dont know exactly. i just know that the more i talk to aspies the more i see myself in how they describe their experience (this happened first on CB), and talking to these professionals, when i talk about my issues, they are incredibly validating about that. they GET my social difficulties, sensory problems, etc - my own unique constellation of things.

i could go on.

Hi..

I figured I would do the obligatory hello world post before getting into blogging about all the love, pain, joy and adventure of my life.

This is one incarnation of me, Karen. I'm currently 32 and I am recently diagnosed with aspergers syndrome. I meet the criteria in the Diagnostic and Statistical Manual (DSM) and I have significant issues with sensory processing and executive function. I am an artist, yoga teacher, geek, crazy person, cat lady, bird watcher, and some-time academic.

Much of "me" will come out here in time, so I think I'll just get right to it. Welcome.