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Where Am I Going, Where Have I Been

Unlike the short story that the title alludes to, this post is about happy things.

August 2012

When I started blogging, it was scary to be writing about myself. I had no idea what me talking about me sounded like. At first I think I simply imitated the voices of other bloggers I liked, holding myself at arm’s length as a defense mechanism.

I probably shouldn’t have been as worried as I was. Few people read those early posts in real time. A lot of you have since mainlined the entire blog (in chronological order, no less), but at the time, I was mostly shouting in the wilderness.

There have been times when I’ve been tempted to go back and revise some of the early posts. I had little knowledge about autism and no right sounding as authoritative as I did. But I’ve let them stand as they are because I like the record they create and I like the evolution I can trace in my writing and in the way I’ve come to think about autism and being autistic. I’ve learned a lot in 26 months, some through research and self-examination, but just as much through the comments that so many of you have generously shared.

As the number of comments on each post has grown, I’ve come to see my writing as a conversation starter and I look forward to seeing what readers will add to my initial thoughts.

I’ve never been good at writing conclusively. Endings are my nemesis. Thankfully, blogging is suited as much to asking questions as to providing answers.

August 2013

I doubt I’m alone in being a blogger who dreamed of writing a book. For a long time, it was simply a “some day” kind of dream. There were two unfinished novels languishing on my hard drive and for the first year of blogging I was having too much fun researching and serendipitously writing posts to muster the amount of executive function that putting together a book would require.

Then something clicked for me one random weekend in August and I went a little nuts with Post-it notes and Google docs folders. In typical aspie fashion, I plowed through a first draft in weeks of furious cutting, polishing, adding and organizing. I revised and edited until I couldn’t stand to look at the words anymore and then, while everyone was sprinting through NaNoWriMo, I set myself a goal of sending out a proposal by the end of November.

The only problem was, the book still didn’t have an ending.

It wasn’t until an editor at JKP asked to see the full manuscript that I sat down to write the ending. A bit desperate and up against a deadline, I spent a lot of time complaining to The Scientist about how hard endings are. As he always does in that situation, he told me to go back to the beginning.

I have no idea where he originally heard that bit of advice, but it’s brilliant and nearly foolproof. Endings proceed from beginnings–sometimes in obvious ways, but more often in unexpected ways.

August 2014

August 2014 was a hard month. While I’d spent the previous two Augusts immersed in words, this year I swore off writing (and reading). By August sixth I was bored senseless and had started to question what my life would look like if my language abilities continued to decline at the pace they have been over the past year.

Apparently I can only play The Sims for so long before an existential crisis sets in.

I’ll spare you the details of the two weeks of self-pity that ensued and jump right to the “It’s August so it must be time to hatch some sort of epic life-changing plot to do something I know almost nothing about.”

The result was this: Stimtastic

I’d been thinking for a while that it would be cool if there was a place that autistic adults (and teens and parents of autistic kids, but especially adults) could get stim toys and chewable jewelry that was specifically for us and that had a consciously stimming-positive message. Then I realized that, “hey, maybe I could make that happen.”

My brain started running off in all sorts of directions. What if the website was not only stimming-positive, what if we used all autistic models? What if we didn’t gender our products? What if we gave back a portion of every sale to the autistic community? What if we supported autistic artists by selling autistic designed products? What if we created a program to help out autistic adults who couldn’t afford things like stim toys and AAC and weighted blankets?

Most of this is still a dream. If you checked out the website, you can see that I’m starting out small. After weeks spent playing with stim toys, I’ve settled on a few that I love to start. If things go well, the site will grow.

And I hope they go well. I’m an idealist at heart and what I’m envisioning for Stimtastic is an extreme manifestation of that. For example, I saw someone on Tumblr post about how they’d like to create cute, stylish weighted vests or jackets for autistic adults. Because we should be able to look great and meet our sensory needs, right? A lot of people responded by liking the post and some said that they’d love to own something like that but might not be able to afford it. And immediately I thought, “this is something I could help with!”

I’ve already decided to set aside at least 10% of sales for giving back to the community. What if in addition to traditional charitable giving, it was possible to use some of those proceeds to help individuals get things that make their life better while also supporting an autistic artist or crafter? What if I could help pay for part of the cost of weighted vests/jackets, making them more accessible to a greater number of people?

Bringing an idea like that to fruition is probably a long way off, but that hasn’t stopped me in the past. I’m terrible at endings but I’m great at beginnings–the wilder and more unlikely, the better.

October 2014

I don’t know what is about Augusts that make me so restless.

It’s nearly November now and like last November I find myself putting in extra long days trying to bring an August brainstorm to fruition. There are so many things that I want to do and yet I have to go slowly, at a pace that my brain will tolerate.

Fortunately, The Scientist has been supportive  from the moment I returned from a long run and infodumped for the rest of the morning about my wild new idea. He’s taken all of the photographs for the website and designed the logo. He’s working on some videos, filming and editing them as he has time. Perhaps it’s time to give him a new name. The Artist, maybe?

I’ve known for weeks that I would be making this post and the thought of hitting Publish on it is as terrifying as the first post I ever made.

Looking back on each of my August beginnings, I see that I had no idea where I was going or what would come of those scary plunges into the unknown.

But I know where I’ve been and that gives context to where I want to go, where I’m aiming to go. The autistic community has helped me shape and solidify my identity as an autistic adult. The support and encouragement I’ve gotten over the past two years has been amazing and I’m grateful beyond words for that.

I also know that I’m privileged in many ways and I feel a certain responsibility to put that privilege to good use. Blogging has been an intangible way of giving back, but I’ve been wanting to do something more tangible for a while now.

So here I am, taking what I know and what I’ve been blessed with, and trying to put it to work in a new way. My hope is that Stimtastic will contribute positively to the community, as a website that celebrates stimming and the role it plays in our lives. On a more personal level, I’m hoping that it will be a way for me to stay involved in the autistic community while my language difficulties decide where they’re taking me.

autumn2

Changing Seasons and Sensory Sensitivities

These past few weeks I’ve had a sensory comfort zone the size of a postage stamp. There are a few things playing into my increase in sensory sensitivities* and one of them is definitely the change of seasons. Transitioning from summer to winter or vice versa is surprisingly demanding.

I think the biggest factor is the constant sensory adaptation. During the winter and summer, the days are pretty consistent from one to the next. It might be uncomfortably hot or cold, but at least my body knows what to expect each day and dressing appropriately doesn’t require a lot of forethought.

Spring and fall, on the other hand, are filled with unpredictable days. Yesterday was t-shirt weather. Today I have on sweats and a thermal shirt. Three days ago I left all of the windows open overnight because it was uncomfortably warm in the house. This morning I dashed out of bed to close the kitchen window, which was open two inches and letting a cold draft in.

With each temperature fluctuation, I find my body struggling to adapt. Too hot. Too cold. Over dressed. Underdressed. It’s hard to find that sweet spot–a consistent, comfortable environmental and body temperature. For the average person, this probably isn’t a big deal. I imagine things like dressing in layers and putting on or taking off clothing as needed is a good solution.

The problem with that strategy is that thanks to wonky interoception I often don’t notice when I’m too hot or too cold until it reaches a level of mild to moderate physical distress. At that point, doing something about it requires not just taking off or putting on a layer, but lowering or raising my body temperature to a comfortable level again. Simply putting on a sweater isn’t a complete solution to whole-body shivering. Continue reading

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Conserving Spoons

If you aren’t familiar with “spoons” in the context of disability, take a few moments to read Christine Miserandino’s landmark piece on Spoon Theory before reading this post.

——

Spoons, by nature, are a limited resource. They’re replenishable, but not on demand. Sometimes we get a new supply each day and sometimes we have to ration out spoons over many days before our supply is restocked. And there’s no spoon store, so forget going out to buy some if you unexpectedly run out.

Conserving spoons is an essential skill. The most obvious way to conserve is simply to ration. More things to do today than you have spoons for? Eliminate some stuff!

That works fine when your day has lots of padding. It’s relatively easy to cut out things like “go out for lunch with officemates” or “participate in 500-comment Facebook conversation.” You probably won’t miss them much. But what happens when you’ve got your daily schedule down to only the most essential items–literally just the things you need to do to make it through your day without getting fired, flunking out of school, or starting to grow exciting new cultures in the kitchen sink?

Not only do you have to start choosing among cutting out essential activities, but life can start to look pretty grim. Extreme rationing is not a viable long-term strategy.  Continue reading

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Echolalia and Scripting: Straddling the Border of Functional Language

The Scientist and I went out to dinner last Friday night. It was the day after I’d taped my radio interview and I was feeling wiped out, so we decided to treat ourselves.

During the course of dinner, the waitress made many visits to our table, asking the questions that waitresses do.

How are you tonight?

Would you like me to bring any ketchup or hot sauce?

Is there anything else I can get you?

Would you like more water?

Do you want to see the dessert menu?

To every one of those questions (and perhaps others I don’t remember) I replied, “I’m good.”

“I’m good” made sense the first time and is an okay answer for the others, assuming I didn’t actually want more water or a dessert or need anything else. Except that I did want more water. I was just too tired to override the default script my brain had settled on and by the time I realized what had happened, she had disappeared into the kitchen.

Not a big deal. Someone else came around and filled our water glasses a short time later. If they hadn’t, I could have just told the waitress I’d changed mind and would like some water.  Continue reading

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Melange Survey

We’ve arrived at the final set of survey questions for this round. Phew. These are the questions that didn’t seem to fit thematically in any of the other surveys. I wish I had a snappy title for it, but I ended up going with the obvious. Okay, maybe not that obvious.

You can answer here or anonymously at Survey Monkey

  1. Do you think you would have performed better academically if you hadn’t devoted part of your brain power to performing “normally”?
  2. What [stereo]typical ASD trait you lack would you want to have? Eg maths genius ;)
  3. Do you have a job or volunteer activity that you are particularly suited to because of your autism?
  4. Do you group letters on things like signs and license plates until you can get an even number?
  5. What can’t you still believe everyone doesn’t think?
  6. If you are interested in something typical for your gender (e.g. fashion for girls) are you interested in a different way? (e.g. hats not shoes or historical costume rather than being “bang on trend”)
  7. Do you think some of the appeal of a favourite subject/special interest is that immersion in a topic acts as priming making it easier and more comfortable to remember and think about it? Do you have trouble remembering facts on demand for other subjects you aren’t spending time on even though you know it and find it interesting?
  8. Do you have difficulty concentrating when listening to radio/audio drama?
  9. What was the most helpful thing after you received your diagnosis? Why?
  10. Do you dislike wearing jewellery?
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Finding Peace in Liminal Spaces

I suspect this may be too esoteric or scattered or specific, but I’m putting it here in the hopes that it will strike a chord with some readers. My writing style is shifting as I find it harder to hold the thread of long passages of text and I’ve decided to give in to that and see where it takes me. If you’re in the mood to read something more conventional, JKP has posted an excerpt from my book in which I explain why it’s called Nerdy, Shy and Socially Inappropriate.

 I’m in an in-between place, much like the one I found myself in after learning more about Asperger’s and before getting diagnosed. If you’ve been there, you’re probably familiar with the swirl of feelings in-between places evoke–certainty and hope shot through with doubt, fear, and confusion. Determination, undercut or perhaps fueled by intermittent anger and frustration.

The in-between places are hard. We no longer quite feel like the person we were; we’re not yet the person who will emerge on the other side of this no man’s land.

*

Liminal (adjective):

  1. of or relating to a transitional or initial stage of a process.

  2. occupying a position at, or on both sides of, a boundary or threshold.

*

The spaces between, the grey areas, have always fascinated me. When I wrote fiction, I was endlessly picking at the in-between places. Perhaps because I find them so hard to stomach in real life.

I’m not good with uncertainty. Literally, my number one reason for seeking out an autism diagnosis was peace of mind. I needed to know if I was making it all up in my head / imagining myself into a neurology / selling myself a bill of goods because I’d grown weary of looking for answers.

To put my mind at ease, someone who ‘knew about these things’ would have to validate my suspicions in a way that I couldn’t do for myself. That piece of paper, I figured, would get me over the hump and out of the in-between place of “this feels right but what if . . . ?”

It did, though not quite in the way I expected. It was more anti-climax than epiphany. But it was a path to closure and closure was what I needed to get on with life.

*

I understand that having access to a paper diagnosis is a privilege. At least, I thought I did. Maybe I’d overestimated the depth of my understanding.

Once again I find myself stuck in an in-between place, this time with no immediate possibility of a diagnosis. Months of making the rounds of doctors and tests have told me only what is not the cause of my language difficulties.

I’m left with three possibilities:

  1. this is temporary and will resolve itself when it’s good and ready
  2. this is something serious and the evidence that would allow a diagnosis is years away
  3. this is my new normal and I should learn to live with it

Which is a bit like being told, “there’s probably nothing serious causing that limp but if there is,  we’ll know for sure when your leg falls off.”

*

If I’m being honest, I need to admit that number 3 on that list is true regardless of whether I’ve won the prize behind door number 1 or door number 2. Months going on years is too long a period to simply keep hoping tomorrow will magically be different.

It dawned on my last weekend that one way out of the in-between place is acknowledging that where I am now is my new normal. That is a hard conclusion to arrive at when the new normal appears so much shabbier and rundown than the old normal.

But there is no practical reward for living in an imaginary future. It only fuels that awful feeling of suspended reality and in-between-ness.

*

Things I am learning to hold close and be with:

  • uncertainty
  • anger
  • sadness
  • imperfection
  • fear

*

In the in-between place, it helps to keep reminding myself that it’s okay.

It’s okay to feel certain and uncertain, often at the same time. Feeling one doesn’t make the other untrue.

It’s okay to doubt myself, to feel insecure and crazy at times. Like the anger, fear, sadness and frustration, I can feel those things, move on when I’m ready, come back to them when I have to.

It’s okay to not have an answer. There are more unknowns in the universe than there are knowns. See also: the unknown unknown.

It’s okay to change. 2500 years ago Heraclitus said, “You could not step twice into the same river” and there’s a reason people still quote him. We are constantly changing, like it or not, accept it or not, realize it or not.

It’s okay to ask for validation and it’s also okay if not everyone I share my experience with offers validation. Ultimately, I have to punch my own ticket.

It’s okay to feel like I’m the only one who knows my experience and, at the same time, it’s okay to identify with the experiences of others, even if I don’t share their diagnosis yet or never will. Adapt what is useful applies to more than just kung fu.

*

Liminal   late 19th century: from Latin limen, limin- ‘threshold’ + -al.

*

I’ve spent the last six months looking for the threshold of this in-between space. Surprisingly, I found it in the confirmation that there would be no answer, not now.

Maybe that’s a kind of resignation. Not a giving up, but a giving in, a practical acknowledgement of reality. I’m done struggling with this thing for now. There is a kind of tired relief–a quiet sense of peace–in acceptance and I’m ready to embrace that.

For now, and for as long as I can keep hold of it.

 

 

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Health Care Survey

We have two more sets of survey questions. This week’s questions are all about health care related topics. Next week is a mix of all the questions I couldn’t figure out how to categorize.

As always anyone who identifies as autistic is welcome to participate. You can answer here in the comments or anonymously at Survey Monkey.

  1. Do you have more dental issues than your peers? Do your autistic children have more dental issues? Do cleanings hurt you more than fillings?
  2. Do you find there are certain medical staff that are better at your autism disclosure than others (nurses better than doctors, blood test/ lab workers better than nurses, specialists better?) ect?
  3. Do you have a code word or phrase that helps you the most during emergency appointments?
  4. How do you manage sensory issues at the doctors?
  5. Does the anesthetic or freezing cause more pain after than not having it for fillings that do not involve the roots? Do you have unusual reactions to the freezing agents?
  6. Do you find you act more or less autistic at the Dentists? Do you prefer to disclose or leave out your diagnosis at the Dentists? Is there any trick that helps you get through the appointments?
  7. Do you go for the usual tests or do you wait them out longer because the side effects of said tests usually cause you more problems than the test themselves? ( e.g. colonoscopy, mammogram, gastroscopy.)
  8. Do you have unusual side effects to anesthetics,  painkillers or other medications?
  9. Does naturopathy generally accept you and address your issues better than allopathy?
  10. Does mental health support normally apply to you or do you find you defy the odds of symptomatic depression, anxiety etc. and need alternatives? What would you suggest to a doctor if you could in this regard?

Typed Words, Loud Voices Anthology Signal Boost

My friends Ibby Grace And Amy Sequenzia are editing an anthology titled “Typed Words, Loud Voices”, a collection of works by people who type to talk always or sometimes. They’re looking for essays, poems, stories or whatever form of expression you’d like to share your message in.

The full details about the book, including submission guidelines are at Typed Words, Loud VoicesContinue reading

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Social Communication Survey

Take a Test Tuesday and our surveys are back! I had hoped to get them up and running sooner, but it’s been a hectic month. Better late than never?

This week’s questions are related to social communication. You can answer here in the comments or anonymously at Survey Monkey. Everyone who identifies as on the spectrum is welcome to participate.

Go forth and ruminate . . .

 

1. Do you have difficulty understanding non-verbal communication with humans, but have the ability to tune into animal non-verbal communication really well?

2. Do you often take things literally as an adult or is this something you did as a child but learned not to as an adult? If you understand figurative language now, are you still aware of the literal meaning first?

3. Are simple ‘yes’ or ‘no’ questions often difficult for you to answer? Do you seem to need to give more detail than others?

4. Do you usually need social information to be expressed in very clear, explicit, direct and concrete language or are you able to understand indirect communication due to learning the rules like a second language?

5. Do you find many idioms, metaphors and sayings confusing or illogical? If you understand them, do they still distract you when people use them? Do you use idioms yourself?

6. Do you tend to consider things outside of their wider context before you think of them as part of the whole? E.g. first considering something someone has said at ‘face value’ before remembering that person’s life situation; or considering the instructions written on a notice as words alone before considering the cues from the environment or people around it.

7. Do you find it difficult to prioritise? Or difficult to quickly make decisions? Does this affect your ability to resolve ‘ambiguous’ social communication or ambiguous instructions?

8. Do you often need to know the reason why the information is needed before you can answer a question? Or do you need to ask several clarifying questions before you can give a simple answer?

9. Do you have physical or vocal tics where you move part of your body involuntarily, have to exert effort to not do this in public and need to do it a lot more later on if you spend time suppressing them. For example, if you tend to click your tongue or twitch your nose but try not to do this around other people, do you have to do it a lot more when you’re next alone?

 

one woman's thoughts about life on the spectrum

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