spoon

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

nonfunctional

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

marbles2

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?
fogbridge

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.

 

 

pattern

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

elves

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?

 

happysad

What Acceptance is Not

Parent A: I love and accept my autistic child just as she is.

Parent B: So you’re just giving up on her?

Acceptance is not giving up.

 Parent A: I love and accept my autistic child just as he is.

Parent B: How can you just do nothing? My son gets at least 30 hours of behavioral therapy a week plus all-day preschool and adaptive sports and OT and PT and . . .

 Acceptance is not doing nothing.

 Parent A: I love and accept my autistic child just as she is.

Parent B: I love and accept my child too! After 5 years of ABA, daily social skills training, and a star-chart-sticker-reward-gummy-bear-timeout-management system validated by an elite team of MIT scientists you can’t tell she’s any different from the other kids in her mainstream class.

 Acceptance is not what happens after you’ve fixed someone to your liking.

 Parent A: I love and accept my autistic child just as he is.

Parent: You mean you’re fine with raising a feral child who runs wild through the streets in his underwear, smeared in the remains of the chocolate bars he eats for breakfast, lunch and dinner?

 Acceptance is not throwing away all rules, manners, education, skills and coping strategies.  Continue reading

What I learned While Running, Swimming and Biking 293 Miles in 8 Weeks

When I decided to sign up for a triathlon back in June, my baseline goal was simply to finish. The distances all looked doable and I figured that as long as I didn’t get hurt, finishing the race was just a matter of pacing myself well.

What I hadn’t counted on was 2-3 foot waves during the swim. On triathlon day, there was a storm blowing in, which created swim conditions that were worse than my imagined worst case scenario. Worse than anything I had practiced in. Worse even than I thought the race organizers would allow us to swim in.

As a “first timer” I was in the last group of swimmers to start. That meant I got to stand on the beach and watch as dozens of swimmers–all experienced triathloners–signaled the lifeguards to be pulled out of the water and paddled into the shallows on one of the rescue surfboards.

Suddenly just finishing didn’t look like such a sure thing. As they say, “man plans and God laughs.”

I'm the scared looking one in the blue shirt.
I’m the scared looking one in the blue shirt.

Continue reading

one woman's thoughts about life on the spectrum

Follow

Get every new post delivered to your Inbox.

Join 6,157 other followers