6 ASL Signs For Autistic Folks

Because Jess and I really need one more thing to do *sarcasm* we’re learning American Sign Language (ASL) together. When you think about it, it’s very practical. When I’m having a nonverbal moment, or hour, or day, we can communicate like usual. We also won’t know for a few years if my hearing loss will progress, so learning ASL now is ideal.

I will say right up front, that signing is definitely limited in its helpfulness, especially if you don’t know anyone else who signs. It can be helpful when it comes to emergency situations. Many paramedics, firefighters, and ER employees know some health-related signs like ‘what hurts?’ and ’emergency contact’. The most signing situation is getting friends and family involved. If the people around you know can communicate with you on a verbally challenged day (that’s what we call it anyway), it can keep everyone from getting frustrated, which means needs are met more quickly, and everyone involved feels better faster.

I’ll be linking the signs I talk about to Lifeprint.com, which is considered to be the best sign language resource on the internet.

1, ABCs– This is cheating but ABCs are the biggest bang for your ASL buck because it lets you communicate any word you want, as long as you can spell it. Fingerspelling is great in a pinch, but it gets annoying for the signer and the signee really fast. Still being able to fingerspell is always a skill worth knowing.

2. Help– This is primarily one of those ‘in case emergency’ signs. Hopefully, if you are ever in a place where you need help, a police officer, EMT, or ER nurse will recognize the sign and provide assistance. Conversely, this sign works great in letting trusted friends or family know that you need help now.

3. Autism/Autistic– Because being able to sign who you are is pretty important. That being said, the sign for autism/autistic is often problematic. There are lots of versions, and a lot of them are considered out of date or offensive. There are also a lot of regional signs for autism, so someone in Florida might no use the same sign as someone in Minnesota. In St. Louis, we sign autism/autistic using the sign for ‘spectrum’ which I love!

4. Hearing– When it comes to ASL, there are generally 3 groups of people- Deaf, hearing, and hard-of-hearing. Autistic folks who are nonverbal, people with aphasia, and people who are mute are a minority. If you’re using ASL the Deaf/hearing/hoh question will be the first one you’re asked. This is more about social rules than anything else.

5. I need– ‘Need’ shares its sign with a lot of other signs like ‘must’ and ‘should’ which makes it extra useful. Pair this sign with fingerspelling of whatever you could possibly need is a powerful communication tool to have.

6. Home signs- The same way hearing people give things nicknames, Deaf people give home signs. While it’s very bad etiquette to make up signs, giving objects that don’t have signs ‘nicknames’ to be used amongst family members is very common. For example, we use the letter ‘W’ twisting back and forth to refer to Winnie. So having home signs figured out for important things like ear defenders, stim toys, or other necessities is a smart thing to do.

There we go, the most useful signs that I’ve learned so far! I know that I meant to start learning to sign for so many years and that it took having actual hearing loss to get my butt in gear and just start learning. So hopefully if you’re anything like me, these essential signs might be the push you need to check out the resources that are out there!

 

The Sound of Silence

The sound of silence is incredibly loud, that’s what hearing aids have taught me so far. They have also taught me that my voice is also super loud, and doesn’t sound the way that I thought it did. My audiologist says that I’ll get used to it- I’m not so sure.

So today, if you didn’t already guess, was hearing aid day! It’s been a couple of months since the audiological testing that showed that I not only have severe Central Auditory Processing Disorder but mild/moderate bilateral hearing loss. The hearing loss was…a surprise, to say the least.

It took all the time since then to order my hearing aids, which are Phonak (because they make the best FM Systems), and gunmetal grey (because they don’t make purple hearing aids for adults?!). For whatever reason, my audiologist only seems to have appointments at 8 in the freaking morning, so I wasn’t particularly excited this morning when we started to do the fitting, although somewhere deep inside, I was incredibly interested in seeing what would happen and how things would change. Because this is a big deal, right? 6 months ago I didn’t even know that I had a problem, and here I am now, with hearing aids and an FM System.

So, the first thing about hearing aids is that they are so. much. more. comfortable than I thought. I was really worried because I have small ear innards (I’m that person who uses the small-sized earbuds) and sensory wise it can be a really sensitive area, you know? Imagine the doctor checking your ears 24/7- that’s what I imagined it would be like. And between the things sitting on my ear and the things stuck into my ear, there are so many things that could go wrong. But they didn’t. Thank goodness. The only issue I’ve had so far is going to itch my hair a little too enthusiastically and bumping the receiver bit. Minor problems.

I’m not sure what to say about the actual hearing part of my hearing aids, I think mostly because I wasn’t really expecting a huge difference? Like, I know that I have hearing loss, but I’ve always seen the auditory processing part as my main issue. I figured if I didn’t notice that there was hearing loss in the first place, how bad could it be?

turns out, bad enough

Guys, everything makes noise. I spent my appointment tapping on things, rubbing things, definitely-not–on-purposely dropping things. I got home and there was so much background noise, which I’ve now been informed are the dishwasher and the heater. Also, the dog snores!

So it turns out the hearing aids work. You can say ‘I told you so’ if you want right now. You can also tell me that when you’re autistic, hearing more is not necessarily a good thing, I’ve already figured that one out. Do you ever feel like something good can’t just happen, there’s gotta be a downside? Maybe that’s life.

Or maybe I’m just being melodramatic. It’s about a 50/50 chance.

So that’s the hearing aids, now onto the FM System. This is meant to target the auditory processing disorder, which, as we discussed earlier, gives me the most trouble, especially during the semester when I’m in class all day. This system is easy, my professors wear a pen-sized microphone, and it transmits directly through a little receiver to my hearing aids, it’s pretty foolproof! Between this and having a note-taker, I’m really optimistic about school. Although it does seem like I said that before the beginning of the last semester, and look how well that went.

I don’t want to sound like these things are the worst thing that has ever happened to me because that’s so so far from reality. The truth is, that I have trouble with change, and this is a huge one. A huge one that involves sensory input. Double trouble.

So for now, here’s the plan

  1. Wear hearing aids for small amounts of time, and stop before I get overwhelmed
  2. Try to be curious about unexpected noises instead of being annoyed
  3. Talk a lot so that I’ll get used to the sound of my voice faster
  4. Avoid situations that might be overwhelming (sound wise) for a few days
  5. Don’t let sensory overload affect the rest of my life

A bonus sixth point is to not drive my wonderful, caring, understanding wife absolutely crazy by being inflexible about everything, just because my hearing aids are driving me absolutely crazy.

Well, that’s it, that’s the whole hearing aid experience so far. I’m already certain that the good parts of the hearing aids are very good, and that I would like to have them all the time. For example, Jess can talk to me even if I’m not facing her- and I can still understand what she says! I’d like more of that, please. On the flip side, I can hear the heat and the dishwasher and people coming down the steps outside and the dog chewing on her bully sticks, and that is just SO MUCH all at once. They say that neural plasticity takes care of this sort of thing after a few weeks, basically, I’ll still hear it but it won’t be at the forefront of my attention all the time, thank goodness.

So, for now, I’m going to hold off making judgments, and just enjoy the process of experiencing the world in new ways. Loud ways.

On next weeks episode of What’s that Noise? our contestants search for 45 minutes only to find that the humidifier beeps! 

 

Yes, But

I know that we all have things that we did in high school that we’re a bit embarrassed about. I definitely have a bunch, that range from mildly embarrassing to totally mortifying, and one those things that I did was improv comedy. Part of me mortified about it, but there’s something that improv taught me that has actually turned out to be useful in real life, and that is the concept of ‘yes, and’.

You see, improv comedy, unlike sketch comedy or stand up comedy, is a team effort. When it’s your turn to speak, the goal is to give your teammates something to play off of, so the cardinal sin of improv being to not leaving them something to work from. Hence, the ‘yes, and’ rule.

‘Yes, but’ works well too. As long as you’re giving your scene partners something to elaborate, you’re doing improv right!

Now I’m sure you’re sitting in front of your screen wondering what improv comedy has to do with anything, and if you’ll stay with me through the Story of the Audiologist’ I promise that it’ll all make sense.

Once upon a time, I was at a conference, and I discovered the magic of captioning. For the first time ever, I could understand everything that was being communicated. I remembered what had been talked about, and my brain didn’t hurt by the end of it.

So, me being me, I started researching, and what I can up with was Auditory Processing Disorder. APD means that while your ears can hear just fine, your brain has a lot of trouble interpreting the input.

It explained a lot, like why I can’t talk on the phone (everything sounds garbled), and why I can’t really hear people are saying if they don’t face me when they’re talking (turns out that reading lips is pretty effective!). And don’t get me started on how distracting facial hair is.

So I talked to my team, and we decided it couldn’t hurt to get tested, given how much trouble was having following my professors in lectures, and after a two-month wait, I finally got to see the Audiologist!

The above sentence may have implied that I was excited on the day of my appointment, but that is incorrect. It was a 7:30 am appointment. And it was 3 hours long. The testing was exhausting, even with my venti coffee. Although I have to say, the tests were fascinating. They tested if I could put syllables together to make words, if I could tell which ear sound was coming in, and if I could pick out words when they were layered with words or static. It’s totally the fascinating science-y type thing that I’d love to watch happen to someone else.

These sorts of tests need to be scored, but I did poorly enough that the Audiologist was confident saying that unofficially, I had APD! Amazing news, because a diagnosis is always necessary to get help.

I thought we were all set to go (and after 3 hours I was so so so ready to leave), until I realized, to my horror, that she had BUT face, and said that we also need to talk about something else.

Turns out that one of that tests that I took was a standard hearing screening, and it also turns out that I didn’t do so well on them. She told me that I had mild/moderate bilateral hearing loss. She also recommended hearing aids.

Hearing loss WTF

Hearing aids WTF

Turns out scaring and calcification on your eardrums can really fuck with your hearing. And that hearing loss makes Auditory Processing Disorder exponentially worse.

3 years ago thought I was pretty normal, now ASD, CAPD, Hearing Loss, probable Learning Disability (did I mention the Testing coming up in January?)

I feel very validated, but also kind of freaked out. All of these things are new, and I don’t handle new very well (but I’m sure you knew that). I’m excited to get my new tech, but I know I’ll be really frustrated before anything gets better.

Anyone with hearing loss/hearing aids/FM systems have any experiences they’d be open to sharing?