Subscribe Via RSSAutism Friendly Night Out: It Happened!
Remember how a few months ago I mentioned I wanted to plan an event where autistics could go out in a more pleasant setting?
I made that happen last night. Well, correction…I made it happen with lots of help from some great people.
In the beginning, I wondered how the retailers would respond. After all, I was going after not just one restaurant but an entire shopping center, and my organization (Autism Women’s Network) wasn’t on their radar yet the way Autism Speaks was. It turned out that in the end pretty much all of them wanted to take part.
The basics I ended up asking for were:
-turn music down (employees were pretty thrilled about this, actually)
-no harsh lighting
-no odors
-no touching
-outdoor seating and gluten free options at restaurants
-an understanding attitude
In addition to the sensory accommodations, we had a quiet room where people could go to take a break from the stores and restaurants. A couple of awesome local teachers brought crafts – and I loved the highly stimmable quality of the materials they used! It ended up being the not-so-quiet room, but only because the kids were having such a great time.
We also had an organization that works with miniature therapy horses.
People seemed to enjoy them, but looking back I have really mixed feelings about that part of the experience.
Along the way, I learned that there are people who understand the vision and get that someone like me is only looking to benefit everyone, and there are people who will do and say anything to take care of their greedy, insecure self. Even if they have to lie, steal, or make bigoted comments about race and ability.
I won’t forget the man who pulled out a blade and directed racist insults to my face at the event. (Might I add that this person is an ex-cop.) I won’t forget the organizations that put money before autistics, even lying about being involved with the event. If anything, I can thank them for giving me a reason to keep pushing forward and planning more of these to prove that autistics have a voice and can create the world that we envision.
Hemiplegic Migraine and A Few Words on Self-Care
While this isn’t a medical blog really, many of us adults on the spectrum deal with a lot of medical and especially neurological goodness, and self-care is one of the realities of living independently.
I woke up this morning with the less desirable of my two types of migraines. Most of my migraines are the type that most people get – throbbing pain, nausea, sensitivity to light and sound. (I am really amazed at how many other autistics tell me they get migraines too.)
Some of my migraines, a rare type called hemiplegic migraine, resemble strokes and involve difficulty talking and numbness or weakness on one side. Lately I’ve started to notice things like numbness in my throat or no sense of smell on one side.
When you have hemiplegic migraines, there are all kinds of meds you’re not allowed to take for one reason or another. Triptans, which they usually prescribe for migraine relief (you may have heard of Imitrex), aren’t allowed because there’s a risk of stroke or heart attacks with this type of migraine. Hormonal birth control containing estrogen isn’t allowed either because of the increased risk of triggering more migraines or a stroke.
Although better neurologists will know all of this, many other doctors won’t, so you have to learn to pay attention and be proactive about your care. If you can’t say it, have it in writing for them.
Since the goal is to have as few of this type of migraine as possible, the neurologist will usually put you on a preventative medication. Supposedly calcium channel blockers can work well for hemiplegic migraine, but I was allergic to it. After a lot of trial and error, we found that Topamax worked for me.
Forgetting to take my meds or not getting it refilled often ends up in weeks of playing catch up with my migraines and seizures, so I find it helpful to use a day-of-the-week container and just take my medicine as soon as I wake up.
Also, my pharmacy had me sign up for an auto-refill program where they’d automatically refill my prescriptions for me and even call my doctor when they run out. That took care of so much of the hassle for me; all I have to do is show up to get it! Oh, and by the way…if you request that they use a non-safety cap on all your future orders, you get a SUPER easy-to-use flip cap instead of that thing you have to wrestle with.
It was definitely scary at first, not knowing what was going on and not knowing what to do for the pain. But I feel much more empowered and in control after taking the time to find a neurologist I can trust, doing my own research, and figuring out what I can handle on my own and what requires medical care.
More info:
SteadyHealth (in plain English)
NIH GeneReviews (The really nitty gritty stuff: On genes and what is genetically related to hemiplegic migraine)
When You Misunderstand and Don’t Know It
It’s one thing to mishear speech as gibberish and get “mumble mumble” instead of distinct words. Or to know that something isn’t sinking in. In that case you can ask a person to repeat or wait for you to process.
Another processing difficulty that autistics and those with auditory processing disorder have involves hearing speech that sounds normal but is out of order or missing parts – and the listener is completely unaware. It can make sense on a surface level, although sometimes the listener might be able to tell that such an utterance doesn’t seem acceptable for the situation.
A simple example:
Last week, we had an appointment to get the dog groomed and the groomer didn’t tell us what time to bring the dog in. The day before the appointment, I asked my husband: “Did you ever hear back from the groomer about a time?” I was pretty sure his response was “no”.
So I grumbled about how irresponsible that was of the groomer. Knowing about my tendency to mishear things, R explained that he had in fact said “NINE”. Instantly it all made sense to me.
It never even occurred to me to say “what?” because “no” was a logical answer to the question!
A more complicated example:
There’s an anecdote that I’ve heard several times from people who originally witnessed the incident when it happened. I recently made a comment about it to one of the people involved, who wrote back and pointed out that I was wrong and retold the story but with a completely different ending from the way I remembered it.
Okay, this really confused me and made me upset. Was the person trying to tell me I was stupid?
I found out that in fact, I had mixed up the order of the story every time and didn’t understand it until I saw it in writing. If it was a story in which A, B, and C happened, I had always understood it as B, then A, and no C, maybe X. That’s how mixed up the words were to me until I saw them in print!
Dealing with it – Or, Isn’t ignorance bliss?
It’s not easy coming to terms with how much this affects the way you perceive the world. Just how much of what you’ve heard in your life was accurate and how much of it was distorted? How can you trust any of your own perceptions anymore?*
But you can’t spend your life apologizing for yourself when it’s not even your fault.
You can, however, learn to ask before jumping to conclusions. When in doubt, ask. Ask people to rephrase, not just repeat something that you might misunderstand the same way. Ask people to break down a long set of instructions or a story step by step. Tell it back to them in your own words to make sure you understood, and say “did I understand that correctly?” Better yet, get it in writing.
If you live with someone who tends to do this, try to have compassion for them. This means not ridiculing them or accusing them of being mean when they react inappropriately to something you say, because there’s a good chance they’ve misunderstood you. Learn to break long rambles into short, digestible bits (it makes for better conversation anyway!), and give one instruction at a time.
*P.S. – Sometimes your hunch or sixth sense is just right.
How Auditory Processing Disorder Creeps Up On You
In living real life with auditory processing disorder, roaring background noise is a major issue in many social situations, whether it’s at a party, restaurant, school, or even church.
Despite what you’d expect, I’m often not even conscious of it unless I can hear random faraway people as if they’re screaming in my ears or I’m at a wedding where I’ve been seated right under the audio system (please don’t ever do this to someone with APD). It’s the kind of thing that creeps up on you without you noticing unless you learn to recognize your own reactions.
Difficulty Conversing
Even if background noise is low enough that you can hear the other person, conversation can require so much processing that there’s nothing left for you to generate spontaneous speech. It’s even worse if there are too many other things to look at, like people walking around or decorations on the walls and tables – things no one else would notice, but you, being extremely visual, can’t resist.
When it’s quiet and I can’t process what someone says, I’ll often say “what?” or “what did you say?” but when it’s loud I’ll just smile, nod, and say “uh-huh”. My first date with my now-husband was in an extremely loud setting and he tells me how strange he thought it was that I made no conversation. Fortunately we’d already talked in other settings, so it wasn’t a deal-breaker.
Difficulty Reading
Reading is normally as natural for me as breathing. I’ve been doing it since I was 2 years old. But in loud restaurants, I get a menu and the letters start swimming in front of my eyes. Factors that can complicate things include conversation at the table (extra auditory input to interfere with visual input, and it sounds like they’re yelling in my ear) and menus in a foreign language.
It helps to find a menu online ahead of time or to just order the same thing every time I go to a restaurant. If neither of these is an option, it’s helpful to have extra time to settle down and read.
The Irritation and Anger
And this is what happens if one remains distracted and oblivious for too long.
If I’m trying so hard to be pleasant for someone else’s sake that I ignore all the warning signs, I’ll find that the sensory stimuli builds up anyway and afterward there’s a lot of pent-up irritation, frustration, and anger.
Someone with less inhibition might just have an open meltdown right then and there, as I used to when I was a child. Now it takes me days to work it out quietly, on my own. Even once the anger is gone, I’ll feel like my head is filled with TV static for a long time.
It takes a lot of work and self-awareness to learn how to recognize your reactions to noise, but it’s infinitely easier than dealing with meltdowns.
The amazing ladies of The Coffee Klatch have invited me to take part in a panel on auditory processing on Wednesday, March 31 at 9 pm. If you’re on Twitter, just go to http://tweetchat.com/room/tck and set your refresh speed to 5 seconds. I hope you’ll join us!
(photo by shoothead)
What Word Do You Use To Describe the Absence of Autism?
So, what word do you use to describe the state of not having autism?
I bet you didn’t think of “healthy”. In a review of Jodi Picoult’s new novel House Rules, NYT columnist Lisa Belkin made this comment:
Her central character, Jacob, has Asperger’s syndrome, and while she has an adult cousin with the disorder, her own three children are (you can hear her knocking wood here) healthy.
The assumption Ms. Belkin is making here is that autism is a disorder, or rather a disease, so not being autistic then would render one healthy. Which is completely ridiculous if you really understand autism, because you can be autistic and completely healthy, or you can be neurotypical and not healthy. (Or other permutations.)
After complaints from readers (hooray for my friend @outoutout!), Ms. Belkin eventually apologized and retracted the comment.
Unfortunately this seems to be the general attitude surrounding House Rules, on the part of both reviewers and the author herself. Cat in a Dog’s World has a couple good posts about the book here and here.
We need to stop talking about autistics as “victims”, “suffering”, and not “healthy”.
Gardenpunk: Nothing Less
When you have Aspergers or any form of autism for that matter, you know how hard it can be to form a genuine bond with anyone. As I said to my dad recently, a real friend is hard to find for people like us.
I’ve known my friend Katie (aka @Gardenpunk) since we were six years old, but it wasn’t until we were much older that we became close. I have to admit that I was afraid of her as a child. She most definitely kept people on their toes. When I thought I’d try out a different, non-geek persona, she mocked me into oblivion. Even at that age I understood that she was telling me to be true to myself.
Katie understands me, not because we grew up together, but because she just gets how I feel about the world. She inspires me constantly because she simply refuses to fear life or others’ opinions. Several of my Twitter friends have gotten to know her and agree that she is just 100% awesomeness.
When I talk to her, I don’t have to worry about being autistic, nor do I ever feel like a weirdo. I feel alive. And by the way, she’s actually taken the time to learn about autism so she can understand what this is all about. Although you know, I think she understands me without looking anything up.
So why am I writing about her now? A couple days ago, Katie suddenly developed bacterial meningitis and septic shock. I must confess that this is consuming for me because I just can’t bear to lose one of the few people in the world whom I can genuinely connect with.
There’s been an incredible outpouring of support for her online, and it’s encouraging to see that after many ups and downs, she has stuck it out and things might be looking up. Katie is such a spitfire, and I just know in my heart that her body is fighting with the same passion that she puts into everything that she does in life. #FightKatie!!
(Katie, I stole a photo. Get better and come after me, why don’t you?)
(photos: kswanberg)
iPhone App Review: Model Me Going Places and Hidden Curriculum On The Go
iPhone Apps are a conveniently portable way to entertain and educate, and as I’ve used them it’s occurred to me that they’d make a great autism resource. Two of the slicker-looking apps I’ve seen lately are Model Me Going Places and Hidden Curriculum On the Go! for Older Adolescents & Adults (also available for Kids).
| Model Me Going Places | Hidden Curriculum On The Go! | |
|---|---|---|
| Format | Photo slideshows with music, controlled from a central menu. Can let slideshow run on its own or control the pace yourself using arrow buttons | 100 tips that you scroll through using "back" or "next" button Can add a tip to favorites Asked whether each tip is helpful to you...don't know why Didn't like linear format, random selection of tips, and lack of categorization |
| Content | Focuses on survival skills Breaks down 6 different outings (such as restaurant, grocery store) into basic steps | Some survival skills like dealing with finances and bosses Some questionable advice on Assimilation 101...see image below. I found this offensive. |
| Cost | Free | $1.99 |
Model Me Going Places: Screenshot
Note the logical, unintrusive layout and simple design.
Hidden Curriculum: Screenshots
It would be helpful if the layout was less cluttered, and in fact most of the features are unnecessary. But some of the tips are useful:
However, some of the tips show a lack of cultural sensitivity. I was surprised (but then again, maybe not) to learn that this was written by a person on the spectrum.
In short: I hope Model Me Kids will come out with more iPhone apps to supplement their line of DVDs. This an app worth paying for! As for Hidden Curriculum, I’d really like my money back.