Subscribe Via RSSDoing My Civic Duty
For a little over a week, I more or less dropped off the face of the earth to do my civic duty as a juror on a trial. When you have a driver’s license or register to vote, it’s not uncommon to get called in for a day of jury duty but most people never get selected for an actual jury.
When you go into the selection panel, they tell you what the trial is for and at that point many people will raise their hands to say flat out that they are opposed to being a juror. They can’t force you against your will, so they let all these people go. But I don’t like to lie, so I didn’t raise my hand here. I wasn’t morally opposed; I just hoped they wouldn’t pick me. (I’m very literal and tend to interpret statements exactly the way they’re worded.) There were probably people answering yes to this question solely to get out of being chosen and not just because they were so morally opposed. Then again, not many people would be able to sit through a child molestation trial.
APD Doesn’t Have to Make You a Second-Rate Citizen
Once the judge and attorneys get you alone, they ask you questions that could qualify or disqualify you. I was open about my APD, thinking it might disqualify me. The judge asked me to explain what it was, and she asked me some questions about it.
Actually I felt that the judge went above and beyond to accommodate me in the courtroom without singling me out, and she did it in a way that benefited the other jurors as well:
- She gave a talk about how some people have a great auditory memory for details and others need to write things down, and if we need anything repeated from the transcript we should raise our hand right away.
- At the point when she was giving us a detailed speech and needed us to focus, she told the observers in the courtroom they wouldn’t be allowed to enter or exit because the doors created too much background noise – something she and I had talked about at the beginning.
- She also prefaced the speech with a talk about how because she’d be reading from a book, we wouldn’t be able to see her lips and her expressions wouldn’t be animated, which would make it harder to make out what she was saying.
Something to Be Learned
You’re wondering about the details of the trial, aren’t you? Let’s just say it was difficult and leave it at that. It gave me the opportunity to see the different ways abuse affects victims into adulthood as well as the myths about abuse that persist in the general public to this day. I’ll address one that seemed to be common among the parents in the group because I think there’s a lot to be learned:
“My child would tell me everything that happens to him/her, so it’s not possible for a child to be abused and not tell an adult right away.”
It made me sad to see how much the parents wanted to believe they knew everything about their child, that no one could come between them. The truth is that children hide all kinds of things from their parents, and it’s not hard for an abuser to intimidate a child into keeping their secret.
When A Hobby Becomes A Therapy You Can’t Live Without
If you found something that made you feel great and better able to deal with the world, how far would you go to hold on to it?
Over the past year or two R has really taken to running, and it wasn’t until he got sidelined by an injury that we realized what it did for him. It wasn’t a hobby or a sport; it was a sensory outlet that made him, in his words, “a tolerable person”.
Insert Forrest Joke Here
Almost from the day he started, he just took off and never stopped. He’d wake up at 5 or even earlier and run 10, 15, 20 miles in the rain, heat, or snow. He’d do all that and still have time for a leisurely breakfast and then get to work well before 9. Every day.
After running marathon-length distances became a regular thing for him, he started to wonder about ultramarathons. Now, as his wife, I am unsure about these things…running 100 miles through Death Valley just doesn’t sound like a healthy pursuit to me. Then again, I suppose there are worse things a person could indulge in.
“I Feel Like A Mortal”
And then the pain set in. It came and went at first, and he tried all the things you’re supposed to try with a minor running injury. Rest, ice, compression, elevation. When he got to the rest part, or in other words, no running whatsoever, his mood hit an all-time low. He was absolutely miserable and cranky and just not himself.
Then he explained to me how much he missed being able to run to the point of exhaustion, and how wearing himself out in the morning made him tolerable to be around each day.
It’s All About Proprioception
We’ve talked about what he can do to replace running while his leg heals, and he needs heavy work activities to get proprioceptive input. The yoga mat and foam block are for different stretches, and the weights and Therabands are for resistance. The only thing that’s made him somewhat happy is riding his bike 25-30 miles. And still he doesn’t feel the whole-body exertion he gets from running.
Proprioception seekers are often thought of as fidgety, constantly running and screaming and crashing into things, but it’s not always so obvious. Both R and I are proprioception seekers and the signs are so much more subtle. R’s not fidgety or loud or crash-y at all, but definitely on the go a lot. My dad is also that way; he’s a quiet man but spends hours every day tending to his yard.
Well, What Now?
After trying almost every compression and therapeutic device known to man, he gave in and saw an orthopedic surgeon, who gave him the bad news. It’s most likely a chronic injury that will require surgery if he wants to continue running. R’s looked into the surgery and he doesn’t like the risk of nerve injury that goes with it. Herein lies the dilemma – some people would just say, well running’s not that big of a deal. I’ll just take up another sport. But running seems to be the only thing that makes him feel able to cope with the world. (Maybe Runman would agree.)
I’m trying to help him through this, not just because I’m his wife but because I understand the strange, often invisible relationship between sensory input and emotions. It takes a lot for a person to recognize their sensory needs and find what works for them, so I’ll do whatever it takes for R to hold on to this.
Speaking at ASA Conference
So I’ve been wanting to tell you guys for a while and I think I can now – I’m going to be speaking at the Autism Society (ASA) national conference in Dallas this summer. Alex Plank from Wrong Planet and Jason Ross from Drive Mom Crazy will be on the panel with me, and we’ll be talking about autism blogs and online communities.
It’s a great topic for the conference to explore, and not just because social media is timely but because online communication opens so many doors for autistics.
Who’s going to the conference? I’m looking forward to meeting up with @RainbowProject and anyone else who’s going to be there!
Book Review: Atypical by Jesse A. Saperstein
There are so many ways to represent autism in popular culture and the media now that it just amazes me. Recently I came across a song by Jack Black about autism and sensory processing disorder that I and my classmates would have loved when we were little. Not only does ABC’s (now-canceled!) FlashForward seamlessly incorporate autism into the plotline, but one of the autistic characters has a very natural sense of humor. Personally, I love the way Gabriel’s jokes hint at more than a one-dimensional existence. “I have a huge…hippocampus.” (Also, the Pickles scene.)
Jesse A. Saperstein, a young adult with Aspergers, recently published a book that also portrays life with autism as an adventure rather than a tragedy. His book is titled Atypical: Life with Aspergers in 20 1/3 Chapters. I was recently offered a review copy of the book and had to find out what on earth everyone kept saying was so funny.
Well, is he funny? Dangerously. He has a way of setting up crazy visuals in your head of scenes like cat poop pouring into his garage (thanks to his obsessions).
Some of the issues Saperstein brings up are romantic advances mistaken for stalking, bullying, and difficulties with organized religion. Whether or not the details of his experiences mirror your own, it’s not hard to relate to the broad themes in his life. I try to keep in mind when I read first-person accounts that no two people will experience autism in the same exact way.
This is a very very small detail that could easily be missed, but I was surprised to see him mention a hyperlexia diagnosis. And then the cover, the “20 1/3″, the long Christmas letters…it made sense.
I’d recommend this book not just to people on the spectrum or even to NTs looking to learn about autism, but to anyone looking for an engaging read that will brighten their day. The knowledge gained about autism is a bonus; Saperstein’s story is about, above all, a person first.
Preventing Domestic Disasters: When People Move Your Stuff
You know what drives me crazy? When someone (like my husband) moves things and doesn’t tell me about it. I know it’s not on purpose, and that most people have no idea how important it is for me to arrange things in a certain way and to know that every last thing will be exactly where I expect to find it.
When I found the plates and a set of bowls in the wrong spots, I decided that putting up a template would be easier than explaining the mistake, since after all a picture is worth a thousand words, right?
I’ve made photo templates like this as I’ve practiced setting up event tables, and it’s been a huge help because I’m such a visual person. It’s simple to just take the picture on my phone and either print it out or store it on the phone for later.
As I looked through our cabinets to photograph them, I was shocked to find two whole bags of brown sugar that I didn’t know we had because they had been moved to the wrong cabinet and I’d only been looking in my designated “bags of excess baking powders” spot. (Whereas they’d been moved to a dark corner of the “pretty canisters of flour and sugar” cabinet.) So over the past few months, I’ve been buying brown sugar, wondering how on earth we keep going through so much of it!
It’s absolutely true that an autistic will keep looking in the same spot even when common sense says it probably isn’t there. (Hello Sally, Hello Ann.) For those of you who are wondering, yes, my parents did try to work on this when I was younger…I’m just extremely visual and rely on routines. Fortunately I know that it’s much easier to use those visual strengths to help myself rather than fight who I am!
(Look, even Molly gets one…)
My Visit to the Audiologist
It took a whole lot of waiting and battling with the insurance company to figure out what was covered, but I finally made it to the audiologist to find out exactly what is going on with my auditory processing disorder.
The audiologist used a series of tests based on the Buffalo Model. (For a detailed description of the tests, read APD Evaluation to Therapy: The Buffalo Model.)
After all the testing, she explained to me that I have the Tolerance-Fading Memory (TFM) type of auditory processing disorder. In the chart she gave me, the school and communication problems listed under TFM were: reading comprehension, auditory figure-ground, short term memory, expressive language, and distractible.
ALICE & CAPD has a detailed description of TFM, but the two main components are
1. Tolerance – reduced tolerance to noise, trouble distinguishing speech from background noise, hyperacusis
2. Fading – difficulty with short-term auditory memory, “part of the message fades away”, trouble formulating long sentences, trouble following instructions, reading difficulty
Fading? In Plain English, Please?
At first I thought, what do you mean I don’t follow directions, I always do what I’m told! Then I remembered the blank looks I gave the audiologist every time she explained how to do a test and how I had to figure it out as I went along. And that’s how it’s always been. Directions never make sense unless I see a diagram or get a chance to practice step by step.
It’s not just instructions; it happens in everyday life. If someone is telling me a story or anecdote, I’ll start getting very confused after the second sentence. Can you imagine how hard this makes it to watch TV? News shows are okay because each auditory snippet registers as a fact that I can deposit or dump and then move on, but shows based on characters and emotion require you to keep storing dialogue in your memory. Same goes for meetings and other conversations – I’m lucky if I can just pretend to keep up.
Here’s a visual to show how the auditory thing works for me. The cursor on my phone blocks out words before and after the word I’m looking at:
I can hear and generally understand the word I’m processing at a given moment, but anything in the past is gone, and I can’t anticipate anything the speaker is going to say. Another analogy would be the professor who used to write on the chalkboard with his right hand while erasing with his left. It was NUTS. If you couldn’t take notes fast enough, you were doomed.
This is how it works for expressive language too, and I can’t tell you what a relief it is to have an answer for this! While I’m talking, I don’t have a road map for what I’ve already said or where I’m going with my current utterance. Hence why I used to repeat it to myself as a child to hear what it sounded like.
What About Tolerance?
I was less surprised to hear about the Tolerance bit (having written about it here) although I was amazed to learn what kind of effect noise had on me without having to deal with socializing too.
Simply repeating one-syllable words with a bit of background noise was enough to bring me to the verge of meltdown, and the audiologist had to give me a break. I really could not believe it. There was no restaurant, no people. Just me, the sound booth, a little background noise, and simple words, yet I was in pain. It really opened my eyes to how much I struggle with noise in everyday life.
If You’re Considering It
So did I think it was worth it? Yes, absolutely. Would I recommend it to other adults? Only if you can find a good audiologist experienced in CAPD evaluation. The person I went to was able to discuss with me some accommodations I should request in different situations and made sure to give me information in visual format, which let me know that she knew what she was doing.
Just Because I Need Time Doesn’t Make Me Dumb Or A Jerk
I once backed out on a cross-country trip in college that was already paid for, less than a week away, because no one else going on the trip cared to work out the logistics and I wasn’t going to drag my luggage around BART for a whole week, looking up each stop as we went along. It was just too much processing in real time.
Autistics often need extra time to prepare for events, outings, and deviations from their routine, much to the confusion of friends and family.
I know there are people who think it’s no big deal to call and invite someone out – but it has to be in the next 10 minutes. What I don’t get is calling the other person an a-hole if they don’t work on this timetable. And they’re not “just joking”, only bullies say that. Don’t be fooled.
What could I possibly need all that time to plan for? Think about all these questions that I have to go over:
-How will I get there? Can I visualize it? Will I have to drive? (GPS is no help to a person with auditory processing disorder, so my strategy has always been to memorize the directions in advance and take a printed copy.)
-How long will it take me to get there? When do I have to leave home? What could go wrong? How much earlier should I leave?
-What do I need to take?
-Will I need to deal with food? What are my options?
-Will I need to meet anyone there? Do I know this person already? How will I find him/her?
-What should I wear? Will I be cold? (I get cold very easily.)
How far in advance I need to plan depends on a few factors like
-amount of socialization (more people or more complicated relationships = more careful planning)
-distance or method of transportation
So we’re traveling this weekend for my husband’s marathon, and I’ve known about this for a long time but was too busy with work to plan the trip. And now I’m really kicking myself, because it’s not okay with me to be 3 days away from the race and not have a detailed plan for how I’m going to handle being in a town I’m not familiar with and eating and viewing the race and getting around.
We have other races and trips this month that I haven’t even begun to plan, so let’s keep our fingers crossed…