I'm struck by how much dialogue and debate here (in the US, where I'm not originally from) spills into illogical and irresponsible use of religion, the constitution, and even the value of letting the real emotions of trauma *be*. Processing events of magnitude (even when they aren't on the news, even when they are and we aren't directly experiencing the trauma) is a process. All the stuff people are saying is necessary. It is heinous, what Huckabee said. But it was said because at the very least he, a person in power who has an audience to say these things publicly, said them, believes them, and then others agree. So it needed to be said and now it needs to be engaged with, and some engagement will change minds, a lot won't, and a lot of hurt will be dredged up. A lot of old wounds from very deep important philosophical debates emerge from tragedy. Fine. Do it.
But I'm very disturbed about how autism coming up as a "reason" and how the reaction of many autism people(?) (not so much self-advocates) are blaming mental illness. And people who have so called mental illnesses or are on psych mess or whatever, are not blaming autistic people, but either way, it's disturbing to me that people need these scapegoats in order to feel safer. Dehumanizing the criminal by lumping them in with the majority of non criminals who have that label, effectively dehumanizes all of us who have that label.
When a heinous thing happens its not about autism, mental illness, a lack of god. None of these things actually explain what a person experienced that led to this.
the best thing anyone can do, as uncomfortable as this is, is to process the fact that we are connected and process the contradiction of that connection as is it bound up with the individual decisions each person makes. Community and individual actions are inextricable. Do not attempt to render the trauma as good vs evil. what if those concepts were removed?
What if a broken system had less to do with the absence of god in them and more to do with the presence of god in them? What if the very reasons people are alienated from community and are suffering further is so bound up a dominant view of God/Satan/good/evil?
What if the way to deal with suffering is to go to it, not alienate it?
What if it were the case that it is only possible for a person to become separate from the web of community when the community breaks them off and convinces them (and they themselves choose to believe) that they don't deserve the caring and regard of humanity?
What happens when, instead of just being victim to a narrative of ones life in which they are a loser who doesn't measure up, a human being who has been traumatized by life and feels angry about that (for whatever reason, autism label, mental label, or other) -- what happens when that person instead chooses to not be a victim but has no outlet for anger?
Anyone in a vacuum can become distorted in thinking.
Germany was systematically cut off from the outside world, fed propaganda, and we Jews became a scapegoat for all kinds of problems, and genocide resulted.
Think about your own vacuums. Those distortions may be privilege in disguise. Or the seeds of your own suffering.
As uncomfortable as it is to process these traumatic events, it can't be done by the dehumanization of the perpetrator(s). It only allows the possibility for the same thing to repeat itself, because we fail over and over to understand the roots of suffering.
Showing posts with label autism. Show all posts
Showing posts with label autism. Show all posts
Sunday, December 16, 2012
Monday, December 10, 2012
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.
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.
Wednesday, August 31, 2011
Is this thing on?
I haven't been posting because I haven't been feeling much self-acceptance. In general, this means I have a hard time being in the world. I don't feel like that is the full reason for much of the stuff below, but it's part of it. As much as I want to change some of this because it increases my isolation, I can't seem to change it, and letting go of trying to change it just makes me feel more isolated.
- I feel less verbal. It can be very hard to talk. Hair trigger frustration. Incomplete sentences. Can I just go hide and rock now?
- Making eye contact is harder. Doing it means a rush of adrenaline. It's too intense. Mostly I look everywhere but at a person.
- High anxiety making me silly.
Don't get me wrong, I like myself. I'm just having a hard time with the involuntary stuff that makes it difficult to connect with others.
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.
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.
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.
Anecdotally
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:
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?) :)
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)
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.
Anecdotally
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?
-Wikipedia
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)
Tuesday, February 16, 2010
burnout and the long walk
Life and its complications unfold
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.
- 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
- Painful awareness of of my limitations with social relationships.
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.
Friday, August 28, 2009
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:
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.
(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..
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.
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