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 Voices.

Why Am I Sharing This?

The obvious reason is that I think this is a terrific and much needed project and want to support Ibby and Amy. The less obvious reason is that I’ve sent in a contribution.

When Amy initially contacted me about contributing, my instinctive response was that the guidelines of the book didn’t seem to apply to me. Intimidated and uncertain, I put off writing something for months.

I communicate by speaking on a daily basis. I don’t use AAC or another form of typing as my primary means of communication. If you met me, you would initially assume that I get along okay with speech.

What you would be missing is how much of my internal world I’ve managed to access and share over the past two years through writing. Typing unsticks the words in my brain in a way that speech doesn’t. It plays a very specific role for me–helping me access the words that describe my experience, where I’ve been, what I feel, what I want, who I am. It may not be my primary means of communication but I’ve come realize that it’s an essential element of communicating the totality of me-ness that I experience.

Typing Across a Spectrum

If, like I was, you’re doubting whether you might have something to say that would be appropriate, take a look at the submission guidelines and then go read this terrific blog post by Mike Monje about how text-based communication allows him to socialize more and with less stress, which has removed some limits he’s felt in the past around socializing. Like me, he uses typing to extend his capabilities in a specific way. Like me, he has contributed to the anthology as a way to stand in solidarity with people who communicate in a wide variety of ways.

If you type to communicate full time or for specific reasons or when speech isn’t happening or because you prefer text over speech, I hope you’ll consider submitting something. The editors are looking for a wide range of voices and experiences that challenge the notion that oral speech is the only way that we can fully participate in society.

P.S. If you just got all excited about submitting something and then got discouraged by the rapidly approaching Oct. 1st deadline, you can email the editors at typedwordsbook@gmail.com to let them know that you are working on a submission and need a little extra time.

 

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

swirl

At the Intersection of Autism and OCD

This morning I got my triathlon race number: 336. My first thought was, “yes, okay, good” because 336 is a pleasing number. If I’d gotten 337, I would have had the opposite reaction. 337 is not a pleasing number at all. I don’t even like typing it.

What’s good about 336?

3 + 3 = 6

6 / 2 = 3

3 + 3 + 6 = 12 which is divisible by 3 and 6, also; the digits in 12 added together = 3

337, on the other hand, is a prime number. Some people love prime numbers, I know. I’m not one of them. I find primes frustrating rather than interesting because I can’t do anything with them.

The strength of my reaction to seeing 336 printed beside my name surprised me a bit. I’m still getting used to this latest eruption of OCD traits and how relieving or unpleasant they can make otherwise meaningless everyday occurrences feel.  Continue reading

hearttt

I Don’t Need Your Awareness

Awareness is trendy. Everywhere you look people are raising awareness about things. Sometimes even things they know very little about.

For example, here’s a 2-minute awareness video titled “Listen” that is intended to “inspire positive change through a deeper tolerance and understanding” about autism (Trigger/Seizure Warning for flashing graphics, loud abrupt sounds).

Do you feel more aware? Do you understand what it’s like to be “a child who is non-verbal” and an “extreme case” (in the words of the producers)?

No, you don’t. How do I know this? Because the people who made that video don’t know what it’s like to be a nonverbal autistic child.

Neither do I, of course. I am not and nor was I ever a nonverbal child. Only a nonverbal autistic child or someone who was once a nonverbal autistic child understands what it’s like to live that experience.

I am autistic, however, and I know that my vision is just fine. The world is not blurry to me. People and objects don’t fade in and out of focus. I don’t see blank objects or perceive the world in flat 3-color animations.  Continue reading

blog theme update

As some of you noticed yesterday, I’ve updated the blog theme to add a little color. Maybe down the road I’ll experiment with some of the new features (like this one that allows short “aside” posts). It’ll take some getting used to, I know. 

And yes the remodeling is an indication of just how bored I am with all the not writing I’m doing.

Triathlon training is chugging along nicely – 3 weeks to go and I feel great, if a bit worn out. The garden is producing lots of cucumbers and tomatoes, a few eggplants and peppers. And for some reason I’m the only person on earth who can’t grown squash? With the exception of one green squash a couple of weeks ago, all I’m getting are tiny little squash that turn yellow and wither.

Besides a renewed obsession with The Sims, that’s about all that’s new around these parts. 

here

Executive Function Strategies

I’m putting the blog on hiatus for the month of August. Some more details at the end of the post if you’re interested.

————

Back in March, someone left a comment on the self-employment series asking me to share some of the ways I manage my executive function challenges in the context of work. With an amusing mix of irony and executive function fail, I’m just now getting around to writing the promised post.

One of the reasons I’ve been avoiding writing this is that I couldn’t figure out how to approach it. Should it be a list or a narrative? Does it need examples? How detailed should it be? There was also the nagging fear that maybe all of my executive function hacks are plain old common sense.

Back when I was fourteen and an aspiring doctor, someone recommended that I read “The Making of a Surgeon” by William Nolen. It was a memoir of Nolen’s progression from med school student to surgeon and I excitedly dug into it, hoping for insight into what med school would be like. Only to be disappointed when one of the first grand bits of wisdom that the author offered was how he learned to do multiple chores at one time–literally to pick up records, drop off samples and get his lunch all in the same trip rather than making three separate trips from his unit to do each errand individually.

I remember lying on my bed thinking, “How on earth did this man get into such a prestigious medical school?” It seemed like a no-brainer to me that if you had three things to do, the best option would be to do them in a geographically efficient sequence.

At the risk of some of you having these same kind of thoughts about my executive function hacks, here are some of the strategies I use at work and day-to-day life.  Continue reading

doggies

Social Interaction Survey

This week’s questions are all about general social interaction (next week is social communication). Some of these questions might hit a little close to home for some of us  because they touch on trust and vulnerability. Please don’t feel pressured to answer any questions that make you uncomfortable.

If you prefer to answer anonymously, you can do so at Survey Monkey.

1. Have you dated knowing you had Aspergers/Autism? If so, when and how did you disclose? How did that turn out?  How did you go about getting someone to date you?

2. How often do you like to go out? Do you prefer to do stuff alone? Do you find it difficult to motivate yourself to go out sometimes?

3. Do you talk a lot to people? A lot of books go on about how Aspies can talk the hind leg off a donkey about their pet topics  but I don’t have the desire to really talk to people.

4. For people diagnosed as an adult, do you have a changed perception of how others see you? for example how friendly/outgoing/confident you seem to them.

5. Do you see yourself as vulnerable because of ASD? Are you more likely to be persuaded to do something or taken advantage of than most other people might? Has your perception of this changed with age?

6. Trusting other people – over the years I have learnt that I am very poor at reading peoples intentions and have been taken advantage of. I have adjusted to this by needing to understand what is happening and needing to be able to logically join up what someone does and says into a consistent picture – or I don’t trust them. How do other people manage this?

7. Do you ever feel like you’re living on a different scale of time from other people? For example, do you hear about a new TV show and only watch it years later because it just didn’t seem urgent?

8. My therapist explained that extroverts gain energy from others and introverts gain energy from being alone, and that autistic people can be either or anywhere in between. She also said there are challenges for extrovert autistics because of the social difficulties making it hard to achieve needed social interaction. (more details) Thinking about it in these terms, where would you place yourself on a continuum from introvert to extrovert? Is this different from how you would think of yourself using the terms in a broader sense, and is this different from how others see you?

 

one woman's thoughts about life on the spectrum

Follow

Get every new post delivered to your Inbox.

Join 6,066 other followers