The Emergency Chat App

The Emergency Chat app was created by an Autistic computer science student and it's seriously the best thing since sliced bread.

It's useful for any time you would prefer to use written communication over verbal. Open the app and a screen with a message you have customized appears. You can hand your phone to someone to have them read the message. Once they read it, they press "continue" and an internal chat applet opens up. Passing the phone back and forth you can chat within it.

You can find it on Facebook here: https://www.facebook.com/emergencychatapp

It's available for free for Android and iOS!

Here's a screenshot of the text I wrote for my version:

You can customize it for any time you may be non-verbal - asthma, allergy attacks, seizures, anxiety - whatever your needs are. 

Constantly Putting Out Fires

August has been a weird month for me. We don't have a bad life, so I can't complain, but do you ever feel like all sorts of curve balls just get thrown at you at once?

I had a really bad review at work, a first for me, and I think caused by really bad communication breakdowns/misunderstandings in a whole bunch of ways.

I am trying my best to bounce back from it, and for the most part think I understand the issues, I just wish someone was more open with me earlier. Or who knows? Maybe this was the kick in the ass I needed.

In this case, no big surprise, it's my deficits in communication that hold me back. I've come a long way, but there is still improvement to be made and I am doing my best.

Things were going well with the nanny, or so I thought, until they weren't so much and then she ran off completely - with one week left before school starts. Just coming out of bad eval at work and then having no child care for a week, isn't the best timing. Hubby and I have been taking turns staying home with him and trying to get work done, but this is about as easy as herding cats. It's also not fair to him to be stuck being bored all day, but there's no one else at such short notice.

On the plus side, the weather has been nice and I was able to drop off his school supplies ahead of time, which helped a lot. He was happy to see the school again and some of the teachers were in. It's such a small school and everyone knows him by name, so they stop to chat with him.

Hubby has been dealing with his own health issues (which is good), but it's also about finding a "new normal." As usual, I feel like whenever we settle into one thing, something else comes and changes up the routine again and it's like we're constantly putting out fires.

I think this school year will be better though. Last year this time I was terrified of the unknown. Now I am truly grateful he is in such a supportive school and looking forward to the routine and predictability again. 

Why Is Eye Contact Important To You?

Why is eye contact important to you?

I'm not asking to be facetious, but to understand. At the same time, it's a question I think everyone should ask themselves. 

We know many studies have shown eye contact between humans is a way we try to understand the intentions of a person. We link eye contact to trustworthiness. When we want to know if someone is lying, we say, "look me in the eye and answer me!" We see romantic moments on TV, where people stare longingly into each other's eyes, and we consider those who don't hold our gaze to have the worst intentions. 

Have you always been right with your assumptions? Has someone ever looked you right in the eyes and lied to you? Did you fall for it because they looked you in the eyes? 

I'm going to ask you to let those ideas go for a bit. I'm going to ask you to consider a different way of being. 

There are those of us who very rarely lie. You'll know us because when we talk we have no filter. If we are asked an opinion, we speak it freely, without any awareness of how you might hear it or feel. When we cannot answer or don't know how, rather than lie, we often go mute. If you keep asking us questions, we're even more likely to shut down. 

We are the same people who rarely make eye contact. You think we aren't listening or paying attention. You think we're not interested. You don't trust us because we look down at the floor. If those are your beliefs, you're putting a whole lot of negative ideas onto people who, through no fault of their own, simply cannot make eye contact easily.

The sad part is because of that little detail (or at least I consider it a little detail), we are routinely excluded. We are misunderstood. The irony is that often, if I cannot look at you when you talk, it's because I really want to hear what is being said. I really want to hear every word and concentrate. It is fascinating enough to me that I want to understand. And yet, I am accused of not listening. 

Think about the discomfort you are demanding from someone else and try to have some empathy. Think about what you are really asking of someone. Think about the assumptions you make. Are you able to take a good look at yourself?

We Used to Fear He Would Be Non-Verbal

It wasn't until last year that the Little Man started speaking sentences, and even then, only we could understand him (and only sometimes). That's not so much an autism thing, but an apraxia thing. I mention it also because not a lot of people, including professionals, know about Childhood Apraxia of Speech (CAS). It's a motor-planning speech disorder. Therapy helps, but it will never go away completely. It means, for the most part, he understands very well, but his body is not reliable when trying to express what is in his brain. The whole body type of this condition is called dyspraxia, which he also shows symptoms of. In fact, I often believe his apraxia/dyspraxia is more challenging to him than autism is. It is quite a double-whammy of communication challenges.

Anyhow, we were at some point very concerned and thought maybe he would never be able to make himself understood verbally. With lots of speech therapy, he went through a huge leap in development and now speaks TONS. I have yet to capture one of his amazing monologues on video (he tends to get shy around cameras) but I can try to capture his more verbal moments by writing them out from memory.

Here are two recent events where he got really excited and the words just came flowing out.


I took him with me to the garage to get the tires changed:
"I love this place! We need these tires! We need these...things! (Those are rims) We need those rims! (Those are too big for our car). Oh we need these ones. What are those? (Those are windshield wipers) Look at them! They cost $150. (No, those are 15" blades) Oh my GOD! There are magazines here with monster trucks! I love monster trucks!"

I took him to his great-great aunt's house for her birthday:
"I love your place. I love your door, there's a flower on it. Oh look, you have a table. She is in this house again (This is Aunties' house. She lives here). It's your birthday. I made a blueberry cake for you. You need to eat it now! Eat it, eat it! You want to share with me!"

LOL. This kid cracks me up and I enjoy every moment. Believe me, after being silent for so long, we never tell him to stop talking. 

Don't Put Words In My Mouth - Part 2

After I wrote Don't Put Words In My Mouth, I got great feedback in the form of a different perspective, saying they actually found some prompts useful. It's described here in a great post.

However, I don't really see that conversation as prompting. I see it as gaining understanding and a form of effective communication.

It's about taking the time to really listen to what someone is trying to express. It's about understanding that language is not always reliable. It's about understanding that language also limits, depending on the day, the circumstances, the person communicating - so many factors for things to go wrong.

When people say that autistics who are using echolalia or scripted dialogue are not using real communication, it's a failure to accept and acknowledge a different way of expression and communication. Those methods of communication, even if repetitive or scripted do have meaning and provide a comfortable way to express concepts that can be difficult to find the "right" words for.

I'm not going to lie, I take great pride in using words precisely, and so do many autistics I know, but language is not always 100% reliable for everyone all the time, and in those cases, other more creative methods have to be used.

When someone, anyone, autistic or not, is trying to say something and you do not understand, isn't it the "right" thing to do to try to understand what they mean? 

Sometimes, when asked a question, my son will parrot back whatever word I said last. This does not mean he is mocking me. Nor does it mean that's what he wants. Nor does it mean he doesn't understand.
It means he knows he should give an answer to a question and rather than say nothing, he says the last thing he hears. Most importantly, it also means I need to wait patiently while he thinks it through, because if I wait for him, he will give me his true, unrushed answer.

For example, sometimes in the morning I ask, "would you like an apple or an orange for your snack at school today?" so that I know what to pack.
He might reply, "no" initially.
This just means he doesn't want either of these things right now, not that he doesn't want them at all, because his mind is on the present.

So I say, "ok," I acknowledge, "but at school today, when you have snack time, would you like apple or orange?" and he'll usually say, "orange....no apple....no orange....uhhhhh."

And this is where I must wait quietly while he decides. Prompting with "apple? Orange?" or even worse, "make up your mind!" is not helpful. He needs time to process and think.

Invariably, he will come out with his answer with conviction, "I want apple!" or he will say he prefers something else, "no, I want banana!" in which case I'll have to see if that desire can be accommodated. But the point is that the dialogue is there and he is allowed to freely speak his mind and make decisions for himself because I wait for him to express himself in his way.

In other ways, for an NT, it's like learning to speak a different language; Autistic. You have to keep an open mind to speak Autistic. For example, my son used to call bananas "moons" because they look like a crescent moon. Other round fruits may have been "circle fruit" so the conversation could easily have been him saying, "no circles, want moon." Hearing the utterance of "no circles, want moon" wouldn't make much sense to many other people, but for us, it would have made perfect sense.

I think it important to encourage and become fluent in whatever language your child is using to communicate because when you think about it, you're asking a lot from them. You're asking them to learn your language. Maybe make a bit of compromise and learn a bit of theirs. 

Don't Put Words In My Mouth

One of the first questions I answered online for a parent of an autistic child was about prompting. Prompting, when it comes to eliciting speech, comes from a good place. It's the idea that you can help a person say the words they are looking for. People want to think they are helping and I understand that, but in the case of my experience with autism (and my son's apraxia), it really doesn't. In fact, it makes things worse.

Don't put words in my mouth

There are times when I lose my words. Yes, I am normally very articulate. Yes, I write prolifically. However, those things are not always dependable. There are times where, for the life of me, I cannot get words out. Everything comes out jumbled. Sometimes, the correct language does not come out. I want to speak English and German comes out. Or French. Or Irish. Or a mix of all those. It's incredibly frustrating.

Sometimes I am reduced to just pointing at things while my husband guesses what I need. At least I have an understanding husband, but when out in public, especially while interacting with people I don't know, I look like I don't understand or am stupid.

People try to "help" by repeating the same questions, raising their volume or guessing what I want to say. When they are not being helpful, they are dismissive and sometimes outright rude and insulting. It is hard to be taken seriously when no one will listen. Most people are rushed for time, so a lot of people don't have any patience for someone who cannot express themselves quickly and clearly.

When I am struggling to find a word and someone starts throwing out random words, thinking they can guess what I want to say, it's incredibly annoying. It's very hard to think with someone asking more questions. It's like trying to count while someone yells random numbers at you.

It makes me feel like they are impatient, and this is someone I do not want to interact with. It makes me feel like they are more interested in doing something else, rather than listening to my needs. It makes me feel small. It makes me feel dismissed. It makes me feel unsafe around this person.

What you can do to genuinely help is give me a few seconds to think. Give me silence to allow my brain to process and my thoughts to make sense. When you give me space, I feel safe and free from pressure to perform RIGHT NOW and lets me relax enough to think straight.

After all, conversation is not a race to see who can speak the fastest. It's an exchange of ideas, and if you create a space where people have the time they need to express themselves, you may hear some valuable gems. Sometimes good things come to those who wait. 

Secret Autism Language

I feel like I should know this secret language

I told a co-worker my son was autistic and that he currently has a cold. I said my son wasn't always able to tell me what was wrong. My co-worker then asked me if I have a special language or form of communication for just the two of us. o_0

No, I told him. I do not have a super secret autism language to communicate with him. When he is unable to properly express himself, we simply don't understand what he needs.



Is there something I'm missing here? I didn't ask, but I wonder if this guy has a special form of communication with his newborn son?

I mean, sure, I'm not entirely clueless - I can tell he has a cold; I can tell when something is wrong. But whether he has an earache or a sore throat, the only way I can know is with an otoscope because asking him isn't usually successful. And yes, I'm a real Dr. Mom - I actually own two otoscopes and I just bought a stethoscope.

I don't know about his question. I feel like I missed a memo or something? 

Snippets of the Child's Mind

The Little Man says things like, "up up high Dada living room!" which means he wants to watch "Baa Sheep" (Wallace and Gromet, not to be confused with "Dada Sheep" which is Shaun The Sheep) with Dada in the living room (since the Wallace and Gromet VHS's are on top of the TV stand).

Or things like "bubbles outside now!" and "beach go" - he points to a post card of Florida and wants to go. Aside from "go" I think the only other verb he has is "watch TV."

He knows "this way" and "that way" and "mine truck."

It's interesting because he will say "hi/bye" to people on command (like a robot) but doesn't look at the person when he does it. He'll maybe wave in their general direction. Despite the perceived lack of emotion or disconnect, I know he does still *feel* something. The only way I can understand this is through Hubby, who we're almost 100% sure is also Asperger's and early in our relationship, I'd ask him how he felt about something and he said he honestly didn't know. I couldn't fathom it at the time, but over time, I've come to accept/understand it a bit better. I used to think it was a cop-out, but I've seen him shut down (and work with him to avoid that now) and I know he feels deeply about things at times.

Hubby doesn't avoid eye contact, but makes it intently - maybe to over-compensate - but it was one of the things that initially drew me in. Never had I been with someone who seemed so intently interested in what I had to say. I understand now it was his only way of actually paying attention to what I had to say. I know now if he isn't looking at me, whatever I say is not heard. It's only over time I understood that he's not ignoring me, he just operates differently.

Anyway, all this to say, with language, we're gaining some insight into our child's mind and what he picks up. He's still not speaking an appropriate age level, but we're learning more about what he thinks about. It's also interesting how he's a lot like Hubby, but also a lot like me and we'll see how this plays out as he grows up. Seeing him and his reactions has made me remember a lot of quirks about myself (and wonder if I don't have Asperger's also sometimes!) - I hated having any part of my head touched, I still don't like making eye contact with people, I'm not 100% sure I'm in touch with my own emotions half the time - I know I can be very cold.

In other news, I took The Little Man to the pool party at the Natatorium and let him go in a bouncy castle for the first time. This was like heaven for him. He bounced a bit, but spent most of his time free-falling face first into the mat. The attendant looked at him a little weird and seemed concerned at first, but he would stand up with a giant smile and do it again. It was horrible when we had to leave and he cried the whole way home. I need to turn my living room into a giant bouncy castle.

Don't Stop The Stimming

This is a sad, but poignant article written by an autistic adult about how she was forced to stop her stimming behaviours.

It is beautifully written prose and clearly explains how she was hurt and silenced.

It should serve as a reminder to everyone to allow your child to express themselves in the way they know how and that makes them comfortable.

What do you think after reading it?

Say What?

I'm posting things mostly for my memory, but also because they're just funny. This is like the tourist phrase book for Little Man language:

Thank you = ha who!
Bye = Die! (said very cheerfully, I might add. Die, everyone, die!)
Snowman = no-na
Banana = nana
Excuse me = no knee
tissues = ah choo!
bagel = day-go

I'm not sure why, but sometimes I'm "mama" and more often I'm "dadamama." Is it because he has to say "dada" more often to get his attention, it's become the default? I don't know, but I don't mind being a "dadamama." I can think of worse things!

Cake for Breakfast

Awww, Little Man took out his communication book, pointed to a picture of a cupcake and said, "eat?" Then he said, "cake." Luckily, I had two banana muffins left, so he got one for breakfast. I try to reinforce whatever communication he comes up with. To let him know he's understood, I give him what he asks for - even if that does mean "cake" for breakfast. It's ok. I also have a batch of pumpkin muffins in the freezer. I'll make some carrots ones and maybe chocolate zucchini. He's forced to eat veggies whether he likes it or not.

In other news, I converted the crib into a bed. He spent the first few days getting up but not opening the door to his room; just standing there knocking on it and saying, "out!"
Hubby opened the door and he said, "oh!" so now he knows he can open it, climb onto Mama and Dada's bed and sit on top of a tired Mama while giggling maniacally. Great. That's why I had hesitated in transitioning. It was great when he was locked up in the crib. However, he recently started jamming his legs through the bars in an effort to escape and he got wicked bruises.
So yeah, now he runs into my room at 9am or so. I need to get to bed earlier.