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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

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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

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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. 

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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.

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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

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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?

 

Prosody: Loud Voice, Fast Voice, Soft Voice, Flat Voice

Things people have said to me:

Dog training instructor: “Get excited! Look happier! Make your voice happy! You have to sound HAPPEEEEE! If you don’t sound HAAPPPPEEEEE!!! your dog won’t know that she’s doing it right.”

Random stranger, after a 5-minute phone conversation: “You don’t seem like a very nice person.”

The Scientist, after sharing something meaningful: “Do you have any feelings about what I just said?”

Phone interviewer, mid-conversation: “I’m glad I’m recording this. You talk so fast, I could never take reliable notes.”

Many people, in many situations: “Shhh. Keep your voice down. The whole floor/house/airport/neighborhood doesn’t need to hear your story.”

More people than I can count (sarcastically): “Don’t sound too excited about it.”

Who Needs Prosody? Not Me

The first time I ever heard the word prosody was when Jess was in high school. She went to a performing arts magnet school, where she majored in creative writing. Occasionally her report cards would mention that she was working on prosody as part of a poetry class.

Naturally, I assumed that prosody was some sort of poetry reading technique and didn’t give it another thought.  Continue reading

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Coping Strategies Survey

This week’s questions are all about coping strategies. Traveling, panic attacks, aging, job hunting, emotions, obsessions – it’s a great mix and I think we’re going to come up with a great big pool of potential strategies that we can all draw on when needed.

You know the drill–if you’re on the spectrum, either formally diagnosed or self-identified, you’re welcome to join in. Answer as many or as few as you like. Do it here or anonymously at Survey Monkey.

 

1. I am wondering if travelling is hard for all Aspies as they age or if it is just me?  I like my home at night and my own environment. I prefer to be as close to it as possible…and I get sick or upset if I stay away…my tolerance is two days from home max and two weeks to recover…Does anyone else feel this way? Does it get worse with age or in certain decades? more details here

2. Is liking or disliking foreign travel related to ability to pass for NT at home?

3. Do you experience problems with long flights? If yes, which aspects are most problematic? (which travel stages: e.g. planning, navigating airports, flying, unfamiliar surroundings at the destination etc – and which problematic factors: e.g. sensory overload, executive function issues, anxiety / panic attacks etc) How do you cope with long flights? (what are your coping strategies)

4. How do you cope with panic attacks in unavoidable situations that you can’t leave, such as during flights?

5. Do you find yourself getting more autistic as you get older? Did your coping strategies improve with age due to experience or psychological assistance (I shy away from the word ‘treatment’) or did they deteriorate over time because of a decrease in overall energy?

6. How do you cope with strong emotions, especially strong negative emotions, especially if you’re also alexithymic? How do you support someone going through a very difficult time emotionally (nothing practical to be done)? How do recognise what the feelings are, and how do you respond in a way that comforts the person?

7. How do you motivate yourself to job hunt? more details here

8. A question that is specifically for people who menstruate: do you notice changes during your menstrual cycle. With changes I mean changes in sensory perception, abilities to cope and/or compensate, EF, etc.

9. If you’ve been heavily obsessing about an interest for a while do you find you have to have a short break from it because it has got too intense?

10. Has anyone taken concerta/ritalin/other stimulant drug prescribed to help ADHD type symptoms and reacted very badly to them physically? What effect did it have on you in the short and long term?

 

Backstopping: Supporting the Autistic Person in Your Life

The Scientist and I moved cross-country a few years ago. We made the drive In four days and by the middle of the fourth day I was on the verge of shutdown. It was way past lunch time, we were out of snacks and we were driving through Middle of Nowhere, West Virginia.

When we finally came upon a place to eat it was a McDonald’s. Just the thought of eating fast food made me feel nauseous. I said I would walk the dog around while The Scientist went inside to order. When he asked what I wanted, I said “Nothing.” By the time he came out with a big bag of food, I was sitting on the curb by the car with my head on my knees, wishing I could teleport myself the final four hundred miles to our new home.

The Scientist sat down to me and said,”I got you something.”

Even though I was so hungry that I was light-headed, I couldn’t imagine being able to eat a burger or fries.

“I don’t want anything,” I said.

Undeterred, he reached in the bag and took out a container of oatmeal. When he opened it, I saw it was topped with fresh blueberries. He’d found the one thing on McDonald’s menu that wouldn’t totally repel me. I was so happy, I nearly cried.

What’s the point of this rather boring and uneventful story? It was the first memorable instance of something I’ve come to think of as backstopping.  Continue reading

one woman's thoughts about life on the spectrum

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