Tuesday, October 5, 2010

Autism Blogs and Trainwrecks

I continue to love on Rachel Cohen-Rottenberg's blog. Her latest on "coming out", and the comment thread that that follows, is interesting.

I used to read the blogosphere for self-interested self-discovery-type information about autism, in order to find language to articulate my experience as I relate it to family, friends and professionals.

My friend said that she doesn't read anymore about autism because the bottom line is that they don't really know anything. I've likewise lost interest in articles about autism and scientific "progress" on the main, because of this. I don't need to repeatedly read inaccurate descriptions of how autistics have problems with empathy, lack emotion, and don't have theory of mind.

I now read the autism blogs for self-interested sociological intrigue, at a special interest level. That is, autistic people who write about their experience and their struggles with the wider "autism community" (read: people "affected" by an autistic person and continue to use the sledgehammer against autistic people for not representing the tragedy of autism as they see it)...

As I think I've written about before, I'm interested in the sociological development of autism as Identity. In the politics of enacting an identity and how that is politically significant.

In how the power politics of the label play out, in who has the "right" to speak, and how they speak as it relates to wider power politics in medicine, disability movements, and popular culture. As such, I peruse twitter as a representation in real-time, a kind of CB radio of how people are thinking about autism. I read with intrigue the ugly, messy personal politics, that grey area rife with black and white thinking and mud-slinging self-righteousness in pursuit of a Truth which doesn't exist.

My experience with the medico-parental discourse is ALL second-hand, because engaging directly with it is far too anxiety-provoking for me. I read about others' struggles with those people. I feel somewhat guilty for not engaging, for why I'd rather blog about why I don't attend protests [than attend protests] or engage with any but the most open and interested parents. I don't write about my rage at medication or ABA or "Autism S(qu)eaks" or misconceptions, for the most part, because I'm not yet prepared to be attacked for it.

So, I continue mainly to consume first-person accounts of people thinking about autism, and blog about my own navel-gazing and pragmatic difficulties in the world. That said, I want to support the writers of blogs and I have started trying to comment on other blogs, and this has earned me a bit more traffic, which then expands my desire to write more politically, more openly, and more assertively about things, instead of whining about sensory overload and such.

If you are autistic and write a blog about autism, post it in the comments. I follow a lot (more than blogroll suggests) so I'm not looking for particular recommendations of other blogs, but if you personally write online I'd like to support it with readership and discussion.

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".

Monday, October 4, 2010

Everyday Needs

Many peers have written about the sheer exhaustion of being out in the world every day. With autism, the demands of social interaction, modulating sensory input, and the extra work to decipher and integrate all of it can leave us collapsed and overloaded at the end of the day.

Ultimately, I am seeing how important it is to make choices, set limits, and give myself permission to pace myself.

I have an everyday need, for instance, to shut out the world at the end of the day, to turn off the lights and wrap myself in a blanket. To completely relax. The tougher the day, the more this is necessary. Like each activity or environment I encounter has a certain "debt" level. Some things incur little energetic debt, like going for a hike (in fact this can be beneficial to integration and renewal). A movie on opening night incurs a lot of debt. So does work as a cashier. So does trivia night at the bar.

I choose to not limit myself. I prefer a movie not on opening night, but if my husband really wants to see it and it's opening night, I'll gauge how prepared I am to deal with it, and will often go. I'll sit near the front to minimize the number of illuminated cell phones and other movement in my field of vision.

I'm working on getting parts of my life together related to executive functioning, and am going to be working with a social work student intern on day to day living. I have to be mindful of how much debt I'm incurring, so that I can focus on building skills. It means a bit more isolation than I'd like, but I have to spend my energy wisely.

Sunday, October 3, 2010

Conversational Much?

I realized after the last few posts I did which garnered comments, that this medium isn't much different from my face to face interactions, in that I have a hard time reciprocating. This isn't 100%, I sometimes do have back and forth conversations with people, but usually I don't.

This is social pragmatic language, and I was recently assessed as having weakness in this area.

When the Autism Women's Network posted my profile mid-September, as part of their Pepsi Refresh campaign (go vote for them!) I got a lot of comments and I didn't respond to any of them. I feel bad about that. But I was overwhelmed. Sometimes when I do respond I feel like my responses are like.. cardboard? Dry and awkwardly bent.

Thursday, September 30, 2010

Shameless Plug

I make stuff. I hope to get more of my prints for sale, right now many of the designs on the site were drawn by tablet on the computer. Below is my best seller. It's not hard to guess why -- he's a looker.

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.

Wednesday, September 29, 2010

Overload and

This might be not so polished or coherent because I'm overloaded. Heh.

Maybe it's two separate posts that I need to write here. I'm starting with overload, but tagging along right behind that is overwhelm that I'm feeling about not understanding people.

What does that even mean? Probably a lot of things. A state before meltdown. A feeling in my head. A scattered sensation. An exhaustion that is simultaneously 'wired' and an anxiety that makes my body feel heavy. It's all the senses all at once becoming a little more brash and difficult to handle. It's feeling trapped, whole body coiled like a wire. It's like drowning, being able to breathe still just by fighting but feeling like little by little something is slipping away. Like there is an edge I'm trickling towards.

That edge is a scary place. I used to think it was the edge of psychosis. I used to think that if I let myself relax, if I let go and stopped fighting the current I was feeling in my body and mind, if I didn't keep coiled up in every muscle of my body, I would go insane.

I admit, I have gone into states of regression when I've gone over that edge. Into places of non-language and vertigo, spinning word salad or feeling so scared and vulnerable that I feel like I'm 4. It is scary. Maybe some outside onlooker would see it as psychotic. But I think it's meltdown.

Meltdown is different for different people I suppose. Not everyone would describe it this way. But this is Karen-meltdown, not anyone else-meltdown.

Meltdowns for me are not tantrums. They may not be classic in any sense, at least from how they appear on the outside.

In overload, the senses are too much to bear. Everything hurts. I crave quiet, and darkness, and deep pressure, and warmth. In meltdown, things get all crossed and the senses don't process in their normal way, so the coherence in my mind is all messy and the world disappears from sight and touch and sometimes sound. Things don't make sense anymore.

Meltdowns happen rarely for me. I have great self control. I sometimes wish I didn't, because having it means suffering from overload, in silence. Like being in a constant state of feeling bombarded by the world.

This past Friday I went to a conference about Aspergers. I attended keynotes and panels, and even participated in one. I hung out with other adults on the spectrum, talked with a parent about .. 'stuff', asked a question, even, in front of the hundreds of people there. It took me two days (at least) to recover, and work these past two days have been really taxing.

Then at work today, it was just hitting me how much my interactions with people feel like they are happening between.. well, not a pane of glass. More like between us is 2 panes of glass, and in between those panes is a layer of water. Sometimes I can't hear the person well. Sometimes I can't make eye contact, or read their face because I have to look elsewhere. Then when I 'wake up' and I do look, I am faced with a whole crapload of emotions that I can't process. So I left work tonight and got home and J was asleep and I just cried. I feel like I could cry and cry because the world is overwhelming and I am sliding toward the edge, at any given moment maybe digging my fingernails into the ground a little more deeply, but still sliding...

I guess I'm still adjusting my understanding of it all. I'm still not at a place of acceptance with it all. I still fight against the overload instead of accepting my limits and respecting what I need to do to stay safe and integrated and grounded.  And for that matter, I just don't exactly know what I need to do.

Tuesday, September 21, 2010

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.

Monday, August 23, 2010

What Would I Do Differently

AANE posted a talk by a man who was diagnosed with AS at 72.

A person commented in response to that article, "He does raise an interesting question: what would an adult do differently with an Asperger's diagnosis?"

I actually could interpret the question more than one way. At first I thought the question asked, 'What's the point of an adult diagnosis -- what would an adult do differently, anyway?". But I think actually the reader is asking what we might do differently in our lives if we'd had the information about aspergers earlier? What would we do differently in our lives up til now if the diagnosis came at 5? Or even 8 or 14?

I tend to recoil from the notion of regrets, because I grew up in a regret-oriented family culture. One that obsessed/s over what one might've done differently. If only. So I tend to dismiss all of this thinking as useless self-flagellation, pointless teeth gnashing, and a wonderful way to inflict pain on those in the general vicinity of the lamentations.

But as I thought about the question for a few more seconds I felt like it actually isn't just "one of those". In part because my head mixed the questions "what's the point of adult diagnosis" and "what would you have done differently if you had the dx before adulthood"... It began to feel more interesting.

If I'd had a diagnosis earlier? I'd have worked on the things I'm working on now, but only earlier, so presumably I'd be on different lessons. There's no guarantee of this. Some lessons come before others, but learning some given lesson at 33 versus 13 is a very different undertaking. Also, some lessons can't come earlier, no matter how early a diagnosis might be.

I'd have understood some of the answers to 'what's wrong' and why the world felt harder for me than for others despite always being told that I was so talented. In other words, maybe I'd have had a more realistic picture of myself. Maybe my parents would too -- since the dx of AS doesn't affect anything about my talents. However it has affected my ability to pursue meaningful and productive channels with them. When I was directed, I excelled. When I became so nervous about the Next Big Step that I wanted to quit, I quit. When it was all up to me, I folded. I didn't know how to ask questions, or seek out mentors, how to figure out where I was in relationship to other people, what other people thought of me, how to speak up for myself, etc etc.

As a child, to have been seen as not just artistic and intense but actually having trouble making sense of the world and being unable to articulate that I was, I think would have had a great impact on the trajectory of my development through my teens and twenties.

In my twenties, I might have never gone on a large number or inappropriately high doses of various medications to address "depression" and "anxiety" which apparently had no real "cause" -- instead, my lifelong depression and anxiety would have had a context, and I'd have been addressing the context instead of just sedating out the feelings. Feelings, I might add, which were accurate interpretations of reality.

I'd have seen my difficulties in romantic relationships in a different way. I have had a sort of immaturity that I could never see, because parts of my development as a child were so precocious and I was always called 'mature' and advanced for my age. It's like my perception of myself and where I actually was had been so different, I was unable to see how I was putting unreasonable pressures on my partners by being like a child.

I might've chosen to find a transitional place to live in between family and partner, but that offered more support than just a college dorm. Eventually, living independently (which I've never done). I think because I never lived independently I've never developed proper routines -- not that I want to become rigid in one particular way, but because as it stands, I have no routines, and my self-care as a result is kind of poor. In an exposure anxiety kind of way, I only do with someone else, often neglecting myself, and when alone, I become almost inert.

If I'd had a diagnosis earlier (if it existed when I was a kid), I wouldn't be the late-diagnosed adult I am now, with all my resultant maladaptations and gifts of living 'outside the lens'.

I definitely hid some of my deficits, which I consider to be a maladaptation. I hide what I don't understand. When I don't hear things, I sometimes pretend I heard and attempt to 'catch up' by filling in the pieces with what's said next. Maladaptive and ineffective.

But I can think of a lot of things that maybe I wouldn't trade out. Some things made me stronger, or just the awesome person I am today.

I had to figure out things on my own, which exercised parts of my brain that are stronger as a result.

I withstood abusive children without understanding how wrong (or right, depending on your perspective) they were for teasing or excluding me. This has made me a highly compassionate person.

I do terribly in groups, but when I'm spending time 1:1 people appreciate my friendship, my insights, my listening, my thoughtfulness.

My intensity and sensitivity are great gifts in my career as a yoga teacher. My auditory deficits have made me appreciate the musicality of the written word, and the poetry of the pure notes of a french horn. My sensory sensitivities have made me a fabulous lover. I wouldn't trade any of these things.

But I think OT and possibly speech language therapy might've helped me integrate the world more, therefore learning (social) lessons that I'm only now feeling the full magnitude of never having learned.

I'm not really filled with regret. But I do appreciate the great challenge that lies ahead of me as I am just learning in a deeper way, what that challenge is.

Friday, August 20, 2010

On Being Versus Having

Regarding: http://blog.autismspeaks.org/2010/08/19/itow-beukers/
(ignoring domain name, addressing content)

I really (really really) don't like the title to the post -- Do You Have Autism or Does Autism Have You?

Whaaaa. It's asking: are you survivor or a victim?? Neither, doughbags. (Apologies if the title was written by the author, but for some reason, I intuit that it wasn't.)

Along these lines, I'm curious to find out thoughts on Rachel's article here http://www.journeyswithautism.com/2010/08/15/am-i-more-than-my-autism-i-refuse-to-answer-the-question/

Everything I am is completely me: I am entirely autistic, entirely Jewish, and entirely female. If you split one of those things off, I wouldn’t be myself anymore. You can’t take away my Jewishness and think that you will recognize me. You can’t take away my being a woman and end up with a complete human being. And you can’t take away my being autistic and think that I will continue to exist, any more than you can take away all my veins and capillaries and arteries and think that my heart will continue to circulate blood throughout my body.

Rachel blows the Autism Speaks question out of the water, answering their title question with, "I am neither a victim nor a survivor".

I'm ambivalent about how to interpret "has autism" because while I don't "have femaleness", or "have Jewishness", I dont *feel* like saying I am autistic or have autism are either grammatically invalid, and one or the other doesn't imply a straight negative. Although it does describe challenges that I encounter with the world. It describes a particularity of my experience -- in my opinion, in a very general and broad-stroked way. In fact it captures very little of who I am, and I almost want to reject the label.

Maybe that's another post. Unfortunately most of the world doesn't really "get" the difference between "T/truth" and/or social construct (which aren't mutually exclusive), which is such a nuanced conversation that it borders on the esoteric.

I do agree with Rachel. The question (do I have autism / does autism *barf* have me / am I autistic)  isn't valid. One doesn't have to insist that autism is negative or positive, or even essential or non-essential, to question the very question.

In terms of identity politics, claiming of terms, and "what we want to be called by other people", having the debate is essential, privleging autistic voices over the proclamations of secondary or tertiary parties is essential.

I think some of the confusion lies in part ith the evolution of identity politics -- in the disability community in particular? I'm not sure. Like, person-first language and all that. It is a kind of reaction coming out of needing to establish personhood before aspect-of-personhood-that-is-negative. Two things are happening that make this person-first argument less valid or important:

1. The descriptor itself is less of a negative, even if it doesn't become a positive, it becomes a "fact" or "aspect of being"

2. That aspect of being then is recognized as *inextricably linked* with their experience of being human. Therefore it is actually important in terms of recognition of that person's experience. A gay person has a particular experience of being gay. Their experience, if they were not gay, wouldn't be the same if you took that aspect of being away. If we erase this fact we erase recognition of discrimination and hate.

It's like colour-blindness in terms of race. When people say "I don't see the person's colour, I only see who they are", actually they AREN'T seeing who that person is. That person has gone their whole life with the experience of beingness as a person of colour. This isn't a generic experience, therefore growing up in the US South or rural US or urban US or Brazil or Britain as a person of colour is a unique and particular experience. It is inextricably linked to who the person is. Notice that doesn't mean "all of who they are" it just means, you can't take that experience away and expect that person to be who they are. From what I understand, race politics in the US is way different than from where I am, or elsewhere, in terms of how people are thinking about the debate. I think examining how identity politics is talked about in other communities is very important to learning about how to navigate this within the autistic community.

Other people's understanding when they use the word "autism" IS important. It's not simply a matter of semantics, and the semantics matter. Language creates the world, in one sense, and is alive, and has real effects on people.

What would I choose to describe myself, then?

Awesome person. Or person who is awesome. Either one is fine. (takes tongue out of cheek)

Tuesday, June 22, 2010

Microflora and Neurology

Oh, I actually don't like "weighing in" on food conversations. I also don't like controversy. I know this is all ripe for debating. Regarding GFCF (Gluten-Free Casein-Free) and autism causation....

I'm not suggesting a causation. I am suggesting a connection. I am suggesting that if diet affects neurology then addressing dietary/digestive imbalances can have an effect on the neurological/sensory/inflammatory issues associated with autism. An effect. Not cure.

I hope the above is clear enough that instead of arguing that I'm somehow camped out on DAN blogs, I'm thinking about something that is only just starting to be recognized in the biomedical community, and integrated into various specialties, looking at the relationship to various conditions/diseases/states of being.


I cannot eat dairy. I once found some amazing almond cheese. I ate LOADS of it. This resulted in bad diarrhea. Checked ingredients and discovered it had casein in it. Other foods with casein (the protein in milk) also affect me badly - cramps, pain, bad poops. Evil.

I have, despite cutting out dairy, major digestive problems. At the very least, abdominal pain and problems digesting and processing food makes it really really hard to focus on other things, because the pain is bad.

Another anecdote: When I was in the hospital and had to have surgery, I was put on fluids only. Y'know, the glucose bag. So. I had no food for days. I have outside verification that I was more clear-headed, communicative, coherent -- on narcotics, even -- than I usually am. I made some effort afterwards to avoid dairy, gluten and soy. It's hard, and I stopped. I still slip up on the dairy. Brain no workie. Stomach ouchie. Suffering. Yes, because of food. Not only because of food, but some because of food.

Now; if I had a healthy gut, I have no idea what I would be like. I do know that even if everything could be explained away by horrible stomach pain my entire life and the inability to connect to my peers because I was loaded up on dairy and other foods I couldn't digest, I would still be who I am if I healed my gut now. I developed in a certain way, and even if I change my neurology in the future I would still be who I am right now. Even if children get their guts in order through diet changes, I do not assume that all the problems go away. Understand that much.

And now, moving beyond anecdote...

Fact: Your brain is connected to your gut. You have nerves running to and from your organs and this is a part of your neurology.

Still really young, the study of gut microflora offers an interesting take on what diet might do for autism. But first take a step back from the label "autism". Take a step back even from notions of "disorder and syndrome" which are really interesting to pick apart (...there are no objective things in the DSM, no clear pictures, only sketches of checklists that provide a common and arguably useless language; ).

While this article deals with immunity and microflora (things like allergic response, which isn't far off topic from dietary issues), see what it has to say about how both innate and acquired immunity is related to other body systems:
Whatever influences, modifies, enhances or suppresses the immune response (at any stage or level) does not exist by itself, and is not going to have any effect unless it is harmonised, connected and influenced in two ways. One is by a number of other systems in the body, including first and foremost the central nervous system, which includes the mind. Second is the endocrine system, which creates and influences emotions.
So the nervous system, the nerves, indeed *neurology* is intertwined with immunity. This isn't, from what I'm reading, a one-way causality thing. Why should it be? Brain communicates with gut, gut communicates with brain. Signal and response. Gut affects nervous system??? Whoa.
Gut microflora is an acquired ecosystem, meaning, when we are born, we have no bacteria in our gut. Microflora consists of many many different bacteria. We actually contain these helpful bacteria in our gut, mouth, genitals, on our skin, really everywhere -- and the human body has more non-human DNA than human-DNA (isn't that fraakin' mindblowing?) :)
Total microbial cells found in association with humans may exceed the total number of cells making up the human body by a factor of ten-to-one.
So. What does this mean?

An Interpretation

The body's ability to deal with its environment, regulate the nervous system, emotions, sensory input, etc etc. is impacted by the balance of microflora in a person's gut (and other parts of the body). The more diverse the microflora, the better that ecosystem processes a variety of foods, and other potentially harmful and benign substances from the environment. If the ecosystem is less diverse, it may not be able to process some types of food.

The simplest and best known example is yogurt. (Active culture) Yogurt is basically dairy that has live cultures which have partially digested it. It contains the bacteria necessary to digest it (albeit, not necessarily in enough quantities for someone like me to handle it). A home remedy for yeast infections is yogurt. A big problem is also candida, the overgrowth of yeast in the system. We're supposed to have yeast, but if we have too much, the system is imbalanced. Anything we eat with sugar in it will promote the growth of yeast, for instance. Reducing sugar can 'starve' the yeast.

This doesn't just apply to yeast. If any kind of bacteria gets too prolific it can make it hard for some of the other useful bacteria to do its job. We have some kinds of bacteria that are ok in small quantities but not in larger quantities. Some bacteria we don't know much about. We don't know what they do. We can't even culture some of them.

So a lot is not even known about this field, and while there has been scarce study of any microflora link to autism, there is also microflora research and anecdotal mention in relation to obesity and diabetes, MS, Celiac...

It doesn't seem like it's nonsense to make a connection between neurology and acquired immunity (which is what microflora is).

Restricted diets because of sensory defensiveness could affect microflora balance. So could a lot of processed food which is primarily sugar, corn and soy. I've read anecdotes that when a child is removed from one of the "offending foods" like sugar, corn, dairy.. they will have what might be called an 'adverse reaction'. I think if I were a bacteria colony and had my main source of goodness taken away, I would scream bloody hell. Donna Williams writes of a backlash reaction (too fatigued to cite, go see Donna Williams' articles on food intolerances and addictions in autism and her own experiences). We are what we eat and we eat what we are.

That isn't asserting a causation. This is not autism=bacterial infection. Nor is it vaccine -> kills gut bacteria = autism.

What it is asserting, however, is that balancing out microflora can affect mood and cognition. Mood and cognition can affect gut. Stress can create intestinal problems. What we think can influence neurology. Intestinal problems affect neurology.

If I can potentially address sensory problems like sensitivities or disregulation by altering my diet (adding foods that promote healthy microflora or eliminating foods that cause pain or promote bacterial overgrowht), I'll try it :)

And that is very different that saying I think I'll cease being autistic if I stop eating dairy and high fructose corn syrup.

I actually must thank my husband for his understanding of neurology, psychology, nutrition, and prolific research into peer-reviewed sources. This cobbled together post doesn't do his thoughts justice.

(I reposted this from my contribution at Autism Women's Network in response to The Myth of GFCF Foods)

Monday, June 14, 2010

Keeping a Diary

I saw my doctor today and she really does think I have IBS. She told me to do a bunch of things, one of them is to keep a symptom diary.

Okay. So in my life I have considered and even tried keeping diaries of various sorts. I kept a diary for a little bit when I was quite young, maybe 8. I kept a private blog for a little while that I still check into now and then. I've considered a mood diary, a food diary, a menstural diary, an exercise diary, a yoga teaching diary... feck it all, I said.

The main reason I rejected the idea of a diary is that, especially when it comes to mood and food, I figure that my obsessive tendencies would drive me over the edge and into the nutty realm of meticulous record-keeping.

So a symptom diary for IBS, which includes what I eat, when I poop, and how I feel at any given moment, that is an all-encompassing project. And for a whole month! I have already added in obsessiveness -- I am writing down the approximate amount of fiber each meal contains. Since part of my doctor's instructions is to get 25g of fiber a day (and at least 3 in any given meal).

I think I'm at about 6-8 grams today, that's not much. Can you tell I'm already obsessing?

Wednesday, June 2, 2010

Gut Problems

I won't get into gory details, but I'm pretty sure I have Irritable Bowel Syndrome or some such difficulty. I have had problems all my life with my stomach. Frequent stomach aches, and gory other things I won't talk about, but to say, it all hurts, is inconvenient, and probably means I'm not absorbing nutrients like I should.

I definitely have a problem with dairy, and I am 90% successful at avoiding it. Recently I ate a whole Mac n' Cheese tv dinner, and I ended up going to the doctor because I thought I was having organ failure. I had my gall bladder removed in 2008, and depending on what sources I read, my diet should/shouldn't change to avoid fatty foods and I should take lecithin to replace bile salts. I don't bother with any of this. I don't know if I should completely eliminate other foods, though, and if anything I think I should focus on removing all processed foods from my diet. And probably butter (yes I avoid dairy, including stuff wtih casein or whey -- it's not just lactose -- and yes, I eat butter, because a nutritionist told me that was likely okay)

Having these issues impacts me socially:

I have many cravings, and many food aversions. So, I'm picky. Many people have dislikes, and so not everything I dislike is because of some neuro issue like sensory defensiveness, but it's hard to tell the difference sometimes.

Ordering at a restaurant is an exercise in running the server back and forth from the table to the kitchen to inquire about ingredients (some restaurants are amazing though, and accommodate "allergies" and have special menus, or can say exactly which items I could order).
Then, I often order something from a restaurant and then can't really eat it. I'll lose my appetite halfway through a meal, usually because the meal is too dry and I can't figure out how to remedy that (the only bbq sauce many restaurants have is steak sauce like A-1, when I need something sweet).

At home, I often go on spurts of wanting to eat the same thing over and over (most recently it was artichokes). I find it hard to cook for my husband and me, and provide the variety he probably wants, and make things he really likes while accommodating my own proclivities. I do not like most rice because of the texture. I love pasta, but I think (cooked) tomatoes bother my stomach. I started making olive oil & white wine pasta with some flax meal thrown in. I can sometimes not figure out what to make, and finding recipes is overwhelming.

Often I'll eat and during the meal or shortly after, I get a very bad stomach ache and have to run to the bathroom over and over. The patterns vary, but it can be a struggle to manage outings when I'm having episodes of this. Sitting through a movie, or going to a restaurant, or even worse, being out and about and suddenly needing a bathroom so bad that I'm worried about accidents.

This is embarassing. But I understand that it's not uncommon for people on the spectrum to have gut issues. See Donna Williams for one perspective on sensitivities and gut issues.

I went backpacking this long weekend and I'm really suffering - I think I ate too much protein and not enough of other stuff. My last day of hiking was really bad, I felt nauseous, hungry, but unable to eat. We went for dinner at Outback and I barely ate my food. I couldn't eat the steak I had ordered, only the shrimp, and bread, and a sparse bit of fries.. I took it home but it was embarassing and it annoyed my husband.

I really want to (and need to!) change what I eat, reduce stress, and figure out other ways to cope with this. I haven't addressed it completely in my first thirty years because in general, because I grew up feeling this way, it often doesn't occur to me that difficulty eating, nausea, severe abdominal pain and unrelenting irregularity just. isn't. normal. Or okay.

Friday, March 19, 2010

being in a relationship (and part of) the social world

I had a conversation with a new friend today, and it's really making me think. We talked about being out in the world and socializing with our husbands and what that is like. I really haven't done much going out with J, we have some friends of his that we hang out with, but we don't go to parties and at church it's been difficult to connect to people. 

My friend said that she isn't all that conversational with the people she and her husband gather with, in part because they have kids and she doesn't, or whatever else, it's like they don't have much in common, and so the conversations often fall flat, and she thinks that they perceive her as maybe immature or less emotionally adult (and she said this isn't incorrect, in a way), and that they wonder, 'what is he doing with her?'

Wow. Exactly. This reflects our/my experience and fears about being social in the world with my husband. I think that my friend accepts the reality in a way that I don't, and it she describes her husband as maybe not so concerned with the implications of people's perception that he is with someone who 'isn't a woman'.

Sometimes I don't feel like a woman. I don't feel on par with most 32 year olds. I don't think I am.

I realize that development, achievement, and social connection are all diverse/variable things, and there isn't just one way to be in the world -- as if we all knew at 17 what we were going to do, and did it, and were successful, and we all fit some mold of what a 30-something person should be, or a 40-something person should be. It doesn't work that way. I sometimes think, with my friend, that if I can't connect with those people, then oh well, and it's not like they'd think me a bitch; I'm a nice person, and so I do have some challenges. Okay?

I'm an intelligent person, I'm a weirdo (in a geeky and sometimes good way), I am caring, I can have deep and soulful conversations with friends one-to-one but put me in a group/party and I don't do well.

But while I could say that the people who would judge me and J are idiots, the fact is that people can/do/will and I don't know how to feel about that. Or what to do about it, aside from hiding out and not being seen as a couple -- which is untenable.

I don't want him to be judged for seeing deeper than my not really holding a conversation well or sometimes getting overwhelmed or overloaded and having sensory problems. I don't want them thinking,

"Wow, she's ... not all there. Why is he with her?? I mean she's hot.. but she's kind of meek. Maybe he wants a frak-toy. Maybe he wants someone he can dominate. Or what's wrong with him, that he can't find some professional successful grown-up woman to be with?'

All of this smacks of BS, but there's some reality to it that means, somehow, our dealings in the world can't be easy, unless I learn some skills and develop emotionally.

This new friend and I are really appreciating each other and the potential for this friendship. I think we'll plan a foursome dinner sometime soon. I would really like to explore having more friendships as a couple with J.

I think he and I both need to gain confidence and feel like it won't just be a disaster. We were long distance for a long time, basically having identities that were as single people but in a relationship, a kind of nebulous state that was still really like being alone socially because it didn't involve negotiating social relationships as a couple. I think we just aren't known in the world enough together. I don't know how the people we do spend time with now perceive us.

I think the anxiety and fear of judgment is the worst part because it can lead us to not try and instead become isolated and that has consequences for our relationship with each other.

I'm not sure if this was coherent, but it's at least reflecting what some of my mind is doing with the really important thinking going on today.

Tuesday, March 16, 2010


Rachel Cohen-Rottenberg's post about self-worth touched a current in me that filled me with .. I don't even know. Thanks, alexithymia.

I've been married a little over three months. J is troubled about our lack of emotional connection. I am too. Every marriage faces challenges, but add autistic crap to that and it can feel potentially un-rescuable.

It isn't really un-rescuable, just like neuroplasticity means I'm not some static human who doesn't change, and potentially grow beyond social deficits.

When J shares how he's feeling in relation to me, (when anyone does, really), my response is most often disconnected from the person -- I just circle back into myself and blame myself and allow what they're saying to feed my empty sense of worth. I can sometimes be angry that they are blaming me for the whole situation, but I also somehow know that their assertions are true and I despair. J says he has trouble explaining some of where he's coming from and how he sees me because he senses that I won't understand. I accept this as true and I slide further.

I am doubting my ability to connect. I often just don't know how to respond to statements about feelings.

I feel pretty empty and boring and afraid to go into the world. I often don't go anywhere unless I've made a commitment to do so.

I am shutting myself off in self-protection.

Every week (when the stress gets too much to hold in), J raises the issues of our lack of connection and his doubt about us working, his uncertainty around me being able to be an adult with him in the world to socialize with average people, to be able to be at his level emotionally, get better at communicating. I agree that these are issues. I see that neither of us knows what to do about it. Not really. I can improve myself through various actions like being physically active and keep practicing connecting, working on auditory processing. It just feels like uphill, and I keep sliding.

I have two modes:

1. guarded defensiveness which includes bodily clenching and holding and hyper-sensitivity as well as emotional opacity and blunted perceptions of the social world. A kind of depressive sullen vacuous lump.

2. childish abandon which includes incongruent exuberance, strange voices and mannerisms, silliness, sometimes fake happiness, a level of emotional opacity and no awareness of the people in the world around me and where they're at. A kind of abandonment of the hyper-vigilance I usually maintain, the release valve if you will, the spastic.

The above is too simplistic, but it's a rough idea of how I feel like I live in places that don't make sense when you look at them all together. It's like there's little continuity to who I am. Except, I can experience depression as a continuity. I can experience anxiety as a continuity, as well as the feeling like I'm not like other people and I feel alone.

I am going to find someone to talk to, who knows about issues related to aspergers.

A squirrel keeps scaling the outside of the house right by the window, and the cats are stalking 'im. Gonna try and snag a picture. Living in the little smiles helps a bit, as I try to deal with this current slide.

Tuesday, February 16, 2010

burnout and the long walk

Life and its complications unfold
  • Moved to a new country and all the unknowns/changes/isolations
  • Married to a wonderful American
  • Reconnecting with the Aspergers Assocation of New England (AANE)
  • Dealing with an entirely new health care system
  • Unsure of how my Aspergers diagnosis will be affected by upcoming DSM change (and my hope that it just gets folded into autism, not wiped off the board as an irrelevant waste of funds and affirmation.
  • Finding day to day tasks variously difficult
  • Not having a heck of a lot to do that involves contact with other people
and the biggie
  • Painful awareness of of my limitations with social relationships.
During a long walk in the woods my guy J and I talked a lot about what being weird means, and what challenges my autistic stuff has in our relationship, and how, despite my growing depression at realizing how much I haven't developed in the first 30 years of my life, there IS hope. It is possible to develop.

But it is a struggle. I get burned out. I limit J in his need to connect in the world as a couple. The difficulties we have with each other in communicating and connecting has placed a strain on us. Rachel at journeyswithautism.com talks a lot about how her husband supports her and also sometimes struggles with things. I perceive the fortitude required to be in relationship.

I feel empty sometimes. J wishes for more connected 'adult' communication, that isn't about tv shows or dinner (artichokes!), that isn't just endless amounts of silence that increasingly make him think that there really isn't anything going on 'in there'. My defense response is that OF COURSE there is. My defense response is 'but this is only really a strength, that zen-like ability to be only in the moment without monkey mind messing up the serene landscape of my being.

But all those defenses come falling down, and I'm left wondering -- am I really vacant? I know I have ideas and thoughts lurking in there. I know that in the past I experienced sharing them as an exercise in inviting sometimes ridicule, invalidation, being dismissed, or just alienated. I feel stymied. I married a skilled orator, in that he can formulate complex thoughts, hold a conversation, remember different threads and synthesize complex themes into original thought.

I have trouble tracking each sentence, struggle with object relations, use incomplete sentences and get lost when I'm trying to verbalize a thought.

I really understand his frustration. I understand his drift toward giving up because it requires a mountain of patience to slow down that much and even help me work out what I'm trying to say and say it in a way that makes sense.

Spending time with a friend recently, who has two kids, prompted a moment that brought this all into a broader light; we were sitting having food, the 3 year old, mom and me. The three year old suddenly asked her mom, 'why is no one talking?' Her mom explained that sometimes there isn't anything to say and there are pauses in conversations and there is no need to talk all the time. But I left that interaction realizing that while I can be quite content spending shared time in silence, not everyone feels the same way about that.

Later I told my friend in a somewhat apologetic way that I was aware I'm not always the best conversationalist. She responded reassuringly that another friend of hers talks non-stop and this is far more tiring and annoying than a relaxed quiet presence. This was helpful, but when I shared it with J it was also an opportunity talk about how we feel alienated from each other because I don't communicate much.

It's not just silence. It's not just me. He spends a lot of time lately on programming projects, and I hang out beside him doing my own thing. But what I'm doing isn't all that mentally stimulating. A lot of what I do hints at some absence in me of internal drive and an intrinsic desire to keep exploring and growing.

I want to learn social skills. But I'm increasingly becoming afraid and isolated, preferring to hide out that fraak up yet another potential relationship. They start off fine and then they fall flat. Because they never get past a surface level of positive interaction. Once a person wants something deeper, it becomes evident that I don't quite know how to do that.

J and I have developed a deep connection over 3 years. He's sympathetic to a lot of what I'm trying to sort out. He's even sorted out some of the same autistic issues I'm dealing with. He can be a guide, breaking down some of the rules and directions/opportunities for learning. He can also get tired. Or wonder, how much is he supposed to just accept it all and forget about me changing, and how much can he push me toward change? Is he allowed to feel lonely, and angry about feeling alone?

I think he is. But my own tendency to take all of this insight and become overwhelmed and lost and then isolated, further pushing myself into a vacant place of understimulation and depression, means that our desire to hold hands for this long walk is perhaps waning. Our fear that we will be unable to prevent a kind of drift apart until our marriage is just an empty series of motions, that we aren't peers but roles, of functional male and helpless hapless female who is never sure of what parts aren't disabled, whether any direction that pushes beyond the safe borders of autistic comfort is even worth trying.

Burnout makes me scared.
The path -- the long walk -- makes me hopeful that there is somewhere to go.

I'm having a bout of debilitating pain that rules out doing much of anything.
I'm looking forward to a support group on Thursday (the pain should be gone by then)
For it's a group of other women with AS and generally I can relate with them and find useful insights that help me with some of the more troubled thinking above.

I'm not there at acceptance. Neither is my partner. I'm not sure I want to just accept everything (in the sense that none of it can change). I think some things can change. They have to change. They don't work. Like, pretending to hear someone when I haven't, just doesn't work.

I'm lost.
not so joyful, I guess.

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