The scope of this post is mainly about employment and Aspergers.
The Social Aspie kind of breaks the stereotype, but oh well; I think many people on the spectrum (maybe all of us) actually do want to connect with people, it's just difficult. I think there's a difference between being social and being socially awkward. And there's also a difference between being social and being extroverted. I'm an introvert. But I care deeply about people and I want to connect with them. I just have trouble doing so.
Employment can be tricky. Barbara Bissonnette of Forward Motion sent out her Aspergers and NLD newsletter today and it was about how only about 20% of skills that count in the workplace are hard skills and 80% are the interpersonal soft skills that help us get along and get things done in the workplace. Temple Grandin, among others, cites certain jobs as better for those on the spectrum; one of the jobs usually on the "not great for spectrumites" list is retail/cashiering.
While I tend to agree, I work in retail and can share some of the positive things about my experience. I never thought I would be good in a retail setting. I briefly worked at a jewelery store (one of those cheap jewelery franchises), and I hated it; I didn't like interacting with the women and teens who came into the store. I found processing credit card transactions stressful, and there were so many little things to try and keep clean. I've never been a stylish person, so I couldn't get excited about fashion accessories. It was horrid, and I lasted three months.
Aside from another stint in a department store restaurant where I worked as a cook behind the scenes, I've stuck mainly to office temping and factory work. I enjoyed the factory because it was repetitive detail-oriented work and there was no interacting with the public; I could wear comfortable clothing and a smock.
When I moved to Boston, I couldn't work for a while. Once I could, I considered going to a temp agency to work in corporate office settings but the more I thought about it, I realized that I really didn't like that environment. The office politics always felt too intense for me; I had to wear clothing that was uncomfortable, and I just felt like I didn't fit there.
One day I found myself at a outdoor gear retailer and on a whim, inquired about job opportunities. I love backpacking, hiking, cycling and kayaking, and I thought this might be a good place. I got hired there. It's on the Fortune 100 Best Companies to Work For. Their benefits are great, and it's a good work culture; the people who work there are generally passionate about the outdoors, and just all-round good people. It's not your average retail sales job.
I work as a cashier. Cashiering is challenging, and I think people on the spectrum are potentially challenged by this type of job in a number of ways, and maybe my experience isn't really representative of anyone else, but I figure it's worth sharing...
The Challenges
- The job involves a degree of multitasking that is challenging.
- The environment can be noisy and chaotic at times. Enter screaming baby.
- Difficult customers/conflict can be really challenging
- There are many complicated things to remember/learn about operating the cash register, and policies/procedures that, while documented, need to be applied appropriately.
Suitable Aspects
Good for someone detail-oriented and who is good at being accurate. I'm meticulous about doing the job properly, but it's made clear to us that most any mistakes can basically be undone, and we're not punished for making them, we get corrected and it's a learning opportunity.
This is key -- there is a kind of prescribed formula for interacting, a role if you will, which can make this less stressful than an open-ended interaction like in an office. Effective cashiering kind of involves guiding a transaction from start to finish; Greeting, ringing, providing information (like a particular discount is being applied here, etc), and finishing the transaction by taking payment, and a farewell greeting (Have a good day!). In other words, there is a basic script that one can follow, which helps reduce the stress of the interaction.
Benefits
There are some things about customer service that I really feel have benefited me. A few of these may be specific to the company I work for, perhaps, but are still relevant in a broader way.
I have an employer who supports diversity in the workplace, and I have an accommodation plan with them. I provided a letter from my doctor and they have worked with me to identify areas that I need support in - for instance, there is one cash register by the door that is supposed to be staffed at all times, but it is more challenging because people are always approaching that end cashier to ask questions, so it requires more multitasking. I have an accommodation that I don't work that register, because when I try to do that one I make mistakes when I normally don't make mistakes. I get overloaded and stressed, and my employer is fine with having me manage this by avoiding that register.
I have the opportunity to interact with a large number of people in one day, but within parameters that I can handle (because of the script, or prescribed role I can take). Now that I am fairly comfortable with the basics of taking payment for someone's purchase, I can interact with them to the degree I feel comfortable. If I'm more overloaded that day, I can simply ring stuff up and say only what I need to, but if I feel more social I can ask them questions about their upcoming backpacking trip or vacation, or tell them about a piece of gear they are buying that I have experience with.
When conflict arises, like if a customer is complaining or is asking for something I don't know how to handle, I have supportive managers I can ask for help. They are always willing to answer my questions. The return policy at this store is very liberal, and I generally don't have to say no -- this makes the job much more enjoyable. I am given all kinds of tools to give great customer service, and I rarely have a customer leave me feeling dissatisfied.
I can practice being friendly and receptive; I notice, for instance that when I make eye contact with the customer, the interaction is much more positive and friendly. It's really damn hard to do, but cashiering offers a low-stakes way to practice getting used to doing it. My job involves a tiny bit of sales, but there's no pressure with it, and I find that when I apply more or less effort I get results. This has been a great growth experience, and one that offsets my experience at that crappy fashion chain.
I get to experience interacting with ALL kinds of people. I meet laid-back Californian climbing buffs, bratty moms with their bratty teens, controlling middle-aged women who are addicted to shopping, scruffy city public works employees, police officers, military base personnel, extremely rich Boston executives who are weekend warriors, old hippie couples who are getting back into hiking, and lots of parents buying their spoiled kids The North Face Denali jackets. All kinds. Nice people, rude people, controlling people, prickly people, crabby people, super-positive friendly people, gay couples who aren't sure how I'll treat them, type-A runners, closet yogis, health freaks, alpine backcountry skiers, exhausted new parents, twenty-somethings getting ready to hike the Appalacian trail, ladies looking for a sporty 'cane' to help them walk after surgery. I would not get this in an office, or a factory. This offers mini-lessons in human nature and how I do or do not handle these different personalities.
I get to learn that how an abusive person treats me, a random cashier they know nothing about, has nothing to do with me because I'm treating them the same way as everyone else. I learn that the person who may seem snobby and inaccessible is actually a really down to earth person. I learn some people really are maybe-gangsters who pay with giant rolls of 100s. I learn that many people walk around anxious and when I am relaxed and I interact with them, it's a mirror for me how much I can be difficult to deal with when I'm anxious.
In general, I feel like cashiering is a training ground for social skills. There are a set of rules, which makes the interaction less stressful, but there's also plenty of opportunity to practice small talk and also how to handle different personalities. Because the workplace empowers me to do what I can to provide good service, for the most part interactions are positive, but the odd time when there is difficulty, like if a credit card gets denied, or someone wants something we cant do, or someone is being unreasonable, I learn assertiveness skills, or through my manager, learn how to handle that situation assertively.
I think it definitely helps that I have disclosed to my employer and have an accommodation plan. My six-month review was excellent. I exceed expectations, and my manager said, "Don't go anywhere". :)
For someone who is social but socially awkward, has sensory processing problems but can manage some degree of sensory bombardment (as long as they get downtime too), retail employment with a supportive employer may be accessible. It's not for every person, NT or spectrum, and I'm not even suggesting that it'd be a great thing to do long-term (it also doesn't pay very well). Some people could handle it. They may be struggling to find a workplace that can accommodate them, and dismissing retail jobs completely for all people on the spectrum may be robbing some of us of both opportunities for viable employment, and a space to practice valuable soft skills.
Fortune's Best Companies to Work For (retail)
Showing posts with label sensory processing. Show all posts
Showing posts with label sensory processing. Show all posts
Tuesday, March 29, 2011
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.
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.
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)
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.
Wednesday, August 12, 2009
Sensory Defensiveness - The Shower
Ugh, problems showering. This is possibly a problem for you, or a loved one. I know people who seem to think that not showering is always a depressive sign of lack of self-care. I admit it can be this for me sometimes. But I find more often it is that some days (or weeks) I find showering difficult if not painful. I'll describe my experience here, in slightly itemized and slightly disorganized form:
It's worse if it's cold. Cold is relative though, and my tolerance for any air movement is pretty much nil. First obstacle: removing clothing.
The feeling of clothing moving across my skin, interrupting the direction of all the little hairs on my body, that can be already a Bad Sensation.
Getting in - must start water first and warm the water to the right temperature. My shower at the moment is ultra sensitive, and I literally have millimeters of adjustment room or it's too cold or too hot. Too cold is worse. At overnight camp when I was growing up the shower was pretty much COLD.
Pressure. Can't be too hard, or the repetitive spraying is painful. It can feel like all these needles on my skin. Obviously too little is bad - but that's not a sensory processing problem, it's more pragmatic, like how do you rinse the soap out of your hair.
Pressure. Can't be too hard, or the repetitive spraying is painful. It can feel like all these needles on my skin. Obviously too little is bad - but that's not a sensory processing problem, it's more pragmatic, like how do you rinse the soap out of your hair.
I had a bath mat that didn't fully dry out. stepping into the shower was a cold and squishy experience. This makes my whole body tense up. If I run the water beforehand, it at least would warm up. It got moldy and I tossed it. The new one is better.
Must wet hair first. If hair is not wet, the body doesn't feel right. The scalp tingles and jumps no matter what I do, but if the water temperature is right, this is pretty much the best part of my shower.
Shampoo first. As much as I try to massage the shampoo into my head, it doesn't quite get there. If my nails are too long (ie any quick on them at all), I have a hard time doing this, sensations on the scalp make me want to scratch it! Smell of shampoo is important. Sometimes it's just way too strong. Often it is.
Hair falling out. Hair on my body. Eeek. Trying to get the hair from going down the drain, I pile it up on the side. This is so ICK and the feeling of the little strands between my fingers, on the surface of my skin, and the feeling of trying to pick it off. It is better than pulling out a giant soap-laden mound of hair from the drain (which is happening anyway. gah.)
The cold water that comes out of the lids of the shampoo and conditioner bottles. Thhhhhhh.
I'm glad I can't see the slime and bits of lint and whatever else in the tub (I'm very very myopic. This might change with laser eye surgery, which I'm considering). If I feel them, I gross out.
If the shower curtain touches me -- as it did today, oh boy. It's like a SHOCK through my system. Literally like a painful jolt of electricity. Takes a while to go away.
Must soap body in particular order. I might go back to using the bodyshop skin towel I have, I think it actually is a bit like therapy, stimulating the skin all over, erasing all these feelings attacking me.
Must rinse in particular order. If I miss a part, I have to start again. If I use a soap that is moisturizing, I feel like I can't wash it off. So the rinse routine happens more than once.
Conditioner must also be rinsed fully, which it often never feels like it is. Conditioner must stay on head while soaping body. Hair must not touch the water. Body must stay in water.
I don't like soap behind my ears. Can we say potatoes? Or potahtohs?
Must rinse hair as the last thing in the shower. Head can NOT be cold. Head then gets wrapped in a towel. I used to have 1/4 inch hair. This was ideal - hair dripping on my body is really intolerable. My current long hair is difficult in this way.
Any air that hits wet body is Bad. So body gets wrapped in towel after head.. but feet must be dried before stepping out. Stepping out must be onto a bath mat. I do NOT like wet feet on tile or linoleum. SQUISHY SLIDY ICK!
Getting clothes on if the body is wet at all won't happen. I have a pretty intensive drying routine. Might try to invest in a thin housecoat (like some spas have, those white ones?) because hair must be done before clothes go on (wet clothing from dripping hair is Not Acceptable). Brushing hair can feel good, if the brush is right. But the brush brings the water out of my hair. It's a peril of long hair.
The body feels good after a shower, no doubt. Sometimes I can get in a space where I feel so gicked out from not showering that showering feels impossible, but if I showered, it would feel more possible because I'd feel less gicky.
So, to recap: Cold = bad. Slime = bad. Squishy = bad. Prickly water = bad.
But yeah, I gotta shower.
Monday, August 10, 2009
What is this blog? Do you want to box me in?
I don't know what will come out on this blog. I have no mission, except joy. If you're searching, asking the neurodiversity vs cure question, I hope you don't find it here because I think nothing is so simple. I have problems I want to solve, but my core essence is who I am; it's wonderful! I practice yoga, I cultivate joy (hence the title of this blog). I am not normal, and I ACCEPT that, whatever label I have. I believe accepting others is tantamount.
A casein, gluten and soy free diet is something I am trying to do. I use a small amount of medication to regulate processing and social anxiety. I think ASD spectrum contains so much diversity that one answer just doesn't fit. I think that environmental factors can't be overlooked; I think that the sensory problems associated with autism are a huge part of my behaviour, and I experience my sensory problems as being greatly improved by changes in my diet. I would like to reduce my corn intake. Corn is associated with C-13 isotopes - literally a heavier carbon atom than what naturally occurs in the environment. I would like to avoid industrial agriculture.
Yoga helps me with sensory processing. Think joint compression.
I would like to learn how to read social contexts better so I can feel confident to be in the world and do well in my yoga teaching career. I want to improve my executive function. I want to cultivate my special interests and lose my internet addiction. I want to take care of my cats and myself and my fiance-soon-to-be-husband. I'm not sure how well i'd do on my own, as I've always had family support.
But I wouldn't change myself for the world! I'm a great person. I have a lot of compassion (which a lot of aspies do). It's so painful that I can't express it a lot of the time. I "soak" up the emotions in a room. I feel intensely. I've spent enough time trying to change myself for the world. IT DOESN'T WORK.
I spent so long wondering what was wrong with me, stifiling myself, fighting to fit in, fighting to be normal, taking medications to try and erase how I needed to be, depressed because I couldn't be myself, suicidal from too much medication, and on and on and on and I AM TIRED. So tired.
I've seen the horrible things some curebies have published about the neurodiversity community and the individuals in that community. I suppose I'm more on that side than not; chelation, restraints, ABA (what I've seen of it, however fucking fun it's supposed to be), and the whole world of fluorescent lights and perfumes and the constant noise and pollution .. all of these things are torture to autistic people.
As much as I've felt burned out and unsupported in being who I am, I am glad I didn't get put through the machine that is killing the spirits of so many.
However there are things that I want to change. I want to reduce my overwhelm and burnout. I don't think these things are genetic in whole, except there are patterns in my family, including sensory problems and food sensitivities and social anxiety that I can identify. But I've studied anthropology and specifically the trope of genetics. It's not everything. In fact it's not most of it. If you eliminate this genetic variation, you will eliminate people whose "gene(s) for autism" never get turned on. I hope that the genetic research gets to a point that scientists and those lobbying for gene therapy or early detection realize that solving the 'problem' through gene solutions is equal to genocide. If all this makes me part of the ND community, I'm much happier there than torturing myself with lack of self-acceptance and continuing to feel "wrong" in the world.
Peace.
A casein, gluten and soy free diet is something I am trying to do. I use a small amount of medication to regulate processing and social anxiety. I think ASD spectrum contains so much diversity that one answer just doesn't fit. I think that environmental factors can't be overlooked; I think that the sensory problems associated with autism are a huge part of my behaviour, and I experience my sensory problems as being greatly improved by changes in my diet. I would like to reduce my corn intake. Corn is associated with C-13 isotopes - literally a heavier carbon atom than what naturally occurs in the environment. I would like to avoid industrial agriculture.
Yoga helps me with sensory processing. Think joint compression.
I would like to learn how to read social contexts better so I can feel confident to be in the world and do well in my yoga teaching career. I want to improve my executive function. I want to cultivate my special interests and lose my internet addiction. I want to take care of my cats and myself and my fiance-soon-to-be-husband. I'm not sure how well i'd do on my own, as I've always had family support.
But I wouldn't change myself for the world! I'm a great person. I have a lot of compassion (which a lot of aspies do). It's so painful that I can't express it a lot of the time. I "soak" up the emotions in a room. I feel intensely. I've spent enough time trying to change myself for the world. IT DOESN'T WORK.
I spent so long wondering what was wrong with me, stifiling myself, fighting to fit in, fighting to be normal, taking medications to try and erase how I needed to be, depressed because I couldn't be myself, suicidal from too much medication, and on and on and on and I AM TIRED. So tired.
I've seen the horrible things some curebies have published about the neurodiversity community and the individuals in that community. I suppose I'm more on that side than not; chelation, restraints, ABA (what I've seen of it, however fucking fun it's supposed to be), and the whole world of fluorescent lights and perfumes and the constant noise and pollution .. all of these things are torture to autistic people.
As much as I've felt burned out and unsupported in being who I am, I am glad I didn't get put through the machine that is killing the spirits of so many.
However there are things that I want to change. I want to reduce my overwhelm and burnout. I don't think these things are genetic in whole, except there are patterns in my family, including sensory problems and food sensitivities and social anxiety that I can identify. But I've studied anthropology and specifically the trope of genetics. It's not everything. In fact it's not most of it. If you eliminate this genetic variation, you will eliminate people whose "gene(s) for autism" never get turned on. I hope that the genetic research gets to a point that scientists and those lobbying for gene therapy or early detection realize that solving the 'problem' through gene solutions is equal to genocide. If all this makes me part of the ND community, I'm much happier there than torturing myself with lack of self-acceptance and continuing to feel "wrong" in the world.
Peace.
Sunday, August 9, 2009
Aspie mini-golf!
In case you're wondering, there isn't anything different in the rules for aspie mini-golf. I went to an event today for the Aspergers Society of Ontario, it was a fundraiser at a local indoor glow-in-the-dark mini-putt place.
My oh my. I left late, because I was nervous. But I got there at maybe 1:30 and the event was 1-4pm. Made sure I had my earplugs and a little clonazepam.
When I got there, it was immediately overwhelming! There were other people talking to the man at the desk and so I kind of just stood there. Eventually I got to buy 50/50 tickets and I got to meet Michael, the person I'd been corresponding with on twitter about this event and the 5K Charity Walk/Run happening in September.
I looked at the silent auction stuff. Lots of cool stuff, but then I saw... weighted blankets!
I played mini-golf with Greg and Jay, the other two adults who showed up. I won the game, even got a hole in one :)
I decided to put in a bid for one of the weighted blankets. I won it! It's a spiderman blanket, and i'm not sure how much it weighs exactly, but I got it for a great price. That was really exciting!
I also chatted a bit with a woman who has a teen daughter, she was eager to chat with me because I guess they don't get so many women through there (being 1:4 ratio and all). I found that interesting, and it was nice to share some of my perspectives with her about my childhood and growing up, and what specific things are challenging for me. I would've liked to talk more with her, and perhaps I will because I gave her my card.
I wore earplugs about half the time I was there. There was all this black light and glowy stuff, and the area where they have groups had these laser thingies which were kind of difficult to deal with. It reminded me of a snozelen room. But it was definitely noisy, with the music, the games, the kids. One of my main sensory issues is auditory. The earplugs made it possible for me to have conversations with people and not get near meltdown. A few times I had a pretty good startle reaction from a siren or bells from one of the arcade games though.
It was great to go out and meet fellow aspies. The staff with Aspergers Society of Ontario are great, and I felt welcomed there. It was nice that I got to attend an event so close to my house.
When I got home, I felt somewhat overloaded, but that's not so unusual. As happens with overload, I was sooooo sleepy, so I curled up under my new spiderman weighted blanket and had a great nap. Ahhh.
My oh my. I left late, because I was nervous. But I got there at maybe 1:30 and the event was 1-4pm. Made sure I had my earplugs and a little clonazepam.
When I got there, it was immediately overwhelming! There were other people talking to the man at the desk and so I kind of just stood there. Eventually I got to buy 50/50 tickets and I got to meet Michael, the person I'd been corresponding with on twitter about this event and the 5K Charity Walk/Run happening in September.
I looked at the silent auction stuff. Lots of cool stuff, but then I saw... weighted blankets!
I played mini-golf with Greg and Jay, the other two adults who showed up. I won the game, even got a hole in one :)
I decided to put in a bid for one of the weighted blankets. I won it! It's a spiderman blanket, and i'm not sure how much it weighs exactly, but I got it for a great price. That was really exciting!
I also chatted a bit with a woman who has a teen daughter, she was eager to chat with me because I guess they don't get so many women through there (being 1:4 ratio and all). I found that interesting, and it was nice to share some of my perspectives with her about my childhood and growing up, and what specific things are challenging for me. I would've liked to talk more with her, and perhaps I will because I gave her my card.
I wore earplugs about half the time I was there. There was all this black light and glowy stuff, and the area where they have groups had these laser thingies which were kind of difficult to deal with. It reminded me of a snozelen room. But it was definitely noisy, with the music, the games, the kids. One of my main sensory issues is auditory. The earplugs made it possible for me to have conversations with people and not get near meltdown. A few times I had a pretty good startle reaction from a siren or bells from one of the arcade games though.
It was great to go out and meet fellow aspies. The staff with Aspergers Society of Ontario are great, and I felt welcomed there. It was nice that I got to attend an event so close to my house.
When I got home, I felt somewhat overloaded, but that's not so unusual. As happens with overload, I was sooooo sleepy, so I curled up under my new spiderman weighted blanket and had a great nap. Ahhh.
Hi..
I figured I would do the obligatory hello world post before getting into blogging about all the love, pain, joy and adventure of my life.
This is one incarnation of me, Karen. I'm currently 32 and I am recently diagnosed with aspergers syndrome. I meet the criteria in the Diagnostic and Statistical Manual (DSM) and I have significant issues with sensory processing and executive function. I am an artist, yoga teacher, geek, crazy person, cat lady, bird watcher, and some-time academic.
Much of "me" will come out here in time, so I think I'll just get right to it. Welcome.
This is one incarnation of me, Karen. I'm currently 32 and I am recently diagnosed with aspergers syndrome. I meet the criteria in the Diagnostic and Statistical Manual (DSM) and I have significant issues with sensory processing and executive function. I am an artist, yoga teacher, geek, crazy person, cat lady, bird watcher, and some-time academic.
Much of "me" will come out here in time, so I think I'll just get right to it. Welcome.
Subscribe to:
Posts (Atom)
Subscribe To
Posts
All Comments