I have a relatively new friend. We’ve been talking a few times a week. She makes me really happy because she’s funny, smart and kind. You know that magical feeling when you connect with another human being? Someone who is special? It’s a deeper bonding than with most people, you can’t explain why that is, you just feel it and it’s mutual. I feel safe enough to confide in her. I’m pretty sure she feels the same. When we aren’t talking I think about her. I wonder how she’s doing, is she okay. And then one of us reaches out to the other and we start talking. Only with my friend we don’t talk in the conventional sense, we type back and forth in real-time. My friend reads very quickly, she’s hyperlexic; if I mention something that she hasn’t read, she’ll zip off and do a little research while I’m still typing out a sentence. Then she’ll reply with the knowledge of someone who knows, but didn’t in the previous sentence. It makes for an interesting conversation.
As a teen she had alexithymia. Meaning it was difficult for her to use words to describe the emotions she was having, as well as understand other people’s emotions, which combined with her literalism, caused a great many problems. So yesterday she was telling me about how she used echolalia and physical actions as a way to connect, but it didn’t always work out so well. People misunderstood her. And I thought of Emma. Because Emma doesn’t have the language to describe her more complicated feelings. So when she wants to connect, she’ll hit or she’ll say, “No, you cannot pull Mommy’s hair.” Which means that she’d like to, but she knows she shouldn’t. At her school she pulled her friend’s hair and was punished. Emma knows this is something that while she enjoys doing it, the recipients often do not. That must be very confusing to her. Emma will say things like, “No you cannot pinch Mommy.” Then she’ll look at me with a mischievous look and will wiggle her fingers at me as though she were about to pinch me.
“No Emmy! Don’t pinch Mommy!” I tell her.
Emma thinks this is the height of hilarity and will say again, “No. You cannot pinch Mommy! Pinch Mommy!” and then as though the feeling is too powerful for her to control, she will.
“Ouch!” I will say. And Emma will double over in laughter.
Last night we went out to dinner in town. It’s very warm here, so we sat outside. One of Emma’s favorite games is to pretend to give me a shot. She “washes” my upper arm by rubbing it with her hand and then pinches me. “Swish, swish,” Emma said, while pretending to put a band-aid on my arm. “Now you do it,” she said, covering her eyes with one hand, while offering me her arm. We play this game often. It is also her way, I think, of working through her fear of having a shot or the finger prick they sometimes do at the doctor’s office.
Yesterday as my friend and I were talking I realized something else. Emma is doing these things, punching, pulling hair, pinching, because she wants to connect, she wants to get a response, she wants to interact. It’s not just a one-sided gesture. She is trying, in the only way she knows, to make contact. Sadly her gestures are often ignored or she is told no, she cannot do that, so she is then further limited. She doesn’t have the words, she cannot always make sense of what she’s feeling, but she really wants to interact, to develop a method of “talking” with another person. She’s doing the best she can with the limited tools she has at the moment.
I realized I needed to help her find physical ways to connect that will not be perceived as “harmful” by the other person, but that are also meaningful to her. I will have to speak with my friend about this, because she will undoubtedly have some good ideas, besides I haven’t spoken to her in at least 16 hours and I already miss her.
Last night at the restaurant, Emma wearing Richard’s hat
This morning – sunrise on the ranch
Emma's Hope Book 
What weird timing for me to read this!
We had to leave an OT session early yesterday because Marisa was being increasingly violent with the therapist. They called me back to help right away, and she kept getting mad and going after her – she “pinches”, but not in a playful way. She’ll really dig her fingers in your forearm, given the chance.
This is always upsetting for me to witness, and I had a bit of a meltdown myself. Then, when we got in the vehicle, she started attacking ME. No more riding in the front seat! 😦
Anyway, it never occured to me that she does this as a way of trying to communicate. Especially since she is non-verbal, that might truly be the case with her.
On the plus side, we are going on TEN DAYS of no accidents! I hate to jinx it by saying it out loud, but I think we MIGHT finally be completely potty trained!
Angie, this is great news about the potty training! And here’s something else I’ve noticed with Emma, that may or may not apply to Marisa… whenever Emma makes a big leap in progress, whether it’s potty training, language or cognition, there is inevitably some other behavior that appears which we find baffling. It does sound like Marisa is trying, in the only way she knows how, to connect and to communicate her frustration, her anger, her feelings. So glad you commented.
This is such an important topic to discuss: many kids on the spectrum are sensory “seeking” which means they will communicate via sensory-related behaviors and sometimes this is not socially acceptable (pinching, hitting, grabbing, running at full speed to crash into a person, pushing) — there must be a menu of “socially acceptable” sensory seeking behaviors.. I’m very interested in hearing your friend’s input. I also appreciated her perspective on echolalia as a way to connect.
She was a head banger when she was much younger and also found theatre training invaluable. She loved being given a “script” she said that was incredibly helpful and taught her about emotions.
Simple Sign Lanuage just might give her a wonderful tool!!! The kind I taught my kids when they were infants. I have a VCR tape (if you still have that like we do) and a book. You just sign every time you say the word it goes with. Mad/ sad/ angry/ play/ want…etc. If you would like it and give it a try I would be happy to send it to you. Also I am sure they have stuff on the computer and ipad too. I hope this might inspire other ideas.. you could also ask her for signs she like for her feelings and use those. ? I was missing your posts.. don’t know if it has been a while or I just missed some. But, just so you know, I missed you 🙂
Aww.. missed you too! So glad to hear from you again. Also the sign language piece is really interesting. I’m going to look for something either an iPad app or a CD. Emma loves an old Elmo video where they sing and there’s a woman doing the song by signing. Emma copies her. This is a great suggestion.
Hi did you find the iPad app for sign language. I use my baby can sign and sign4U app to teach my son who is not verbal yet. He can say some things though. The words have come better when we signed but I’m looking to hire a teacher sort of like a speech path. Sign language has unlocked a lot for us as well as PECS. Again I have to say thanks for posting this blog.
Not yet, really appreciate you sending me the two you use!
I just found one called “baby sign” so I’m downloading that and there’s another I might try after looking at this one. Sign4U doesn’t appear to be around any longer.
Lol it was sign4me. You type in any sentence and the avitar will sign it for you. You can rotate avitar zoom in to hands and change prospective so you can really see what he is doing with his hands. You can slow it down too. It gives different instances so you can fine toon your speech. I tried books but we fumbled a lot. My son loves moving avitar around. Sometimes he gets lost in it. This is good cause he uses app longer. He moves his hands and smiles. He told me with sign once that he prefers his PECS cards because he does not know enough words in sign. He also has told me he does not remember things with sign. We have also had amazing conversations about feelings since we started sign. Sign langauge is an amazing break through for us with the non verbal child. In US children with ASD can go to centers and learn to sign for school in Canada you must be hearing impaired to be able to receive this education. This is why I’ve considered having a ASL teacher. Having an app is like having a really cool dictionary. It misses the social aspects of language. Look for app ASL idioms and you will see what I mean. Oh and funny thing due to motor planing my kiddo speeks with an accent. Lol so not all signs are done proper that’s things a teacher could work through… Hmmm that’s all I can say on subject. Wishing you an awesome day though and hope this helps
Just tried sign4me and it couldn’t be found either. 😦
Oh also my child likes to sing and tap herself in a repeat pattern when she is in need of senory imput. Seems like that could be used for signs too. Might be quicker to pick up if your children are like that too.
when zack is needing sensory work done with him, he pinches his finger until there are callouses on it. Brushing and joint compressions help, but the best would be a daily dose of ocean waves! That’s the only time he stops completely.
Before he could talk he often hit to get attention.
We failed miserably with sign language when he was smaller, i think zack just hadn’t realised the importance of communication then! Also, i’m not sure he had (or has) the co ordination in his fingers to achieve sign language!
Yes, brushing and joint compression are things Emma enjoys and I think needs too. That’s interesting about Zack and the ocean waves. I’ll have to watch Emma the next time we’re in the ocean.
So happy for you that you have a new friend. I love the way you talk about her, obviously you really like her and you enjoy your conversations. You are a good person, Ariane, and you should be surrounded by good people.
Thank you for bring up the topic of communicating via physical actions. I noticed a long time ago that sometimes when my son wants to communicate with his sister he is doing the same thing – pinching, hitting even biting. Because she regularly hits back, I used to think that it is sensory seeking and I would hug him really strong. But then I realized that he actually wants to talk and since he has limited language, he is trying new ways to communicate. As you noticed, not always socially acceptable. It is so sad that he is willing to endure physical pain just to be connected, as you say. In such case, I would distract him with something else and it works for now.
The other problem that I have is that he easily gets bored. He has very limited interests (few toys, several computer games, several TV shows, Wall-e and some other films that he watches tens of times), so he will get bored and then he doesn’t know what to do. It is very difficult for him to try new things, so I struggle here with introducing novelties and with learning in general. I was thinking of getting him an I-pad, but I am afraid that he will speak even less then. What is your experience? Do you think that I-pad will affect his language? Do you think that he will use the I-pad to hide himself behind it? I hide behind books all the time; when I encounter unpleasant people or situation, I just keep on reading:) But, what if he use an I-pad in that fashion?
Thank you,
Maja
Hi Maja,
We got Emma an iPad when they first came out and Emma loved it. She used a drawing program for awhile, which was very exciting as she had never drawn anything before, as well as some other apps we found. Then she kind of lost interest, though she does love looking at photographs on it. There are so many great apps now that can help kids on the spectrum, I know a school we are considering for her uses iPads in the classroom and they’ve had tremendous success.
I am also a reader. I feel naked without a book. I carry at least two actual books with me at all times and have half a dozen that I’m currently reading on my iPad!
I love hats and Emma looks terrific in one! Also like her body language… So casual, so chill and so artsy! Looks like you are having a great time!
Thanks Charlotte, it is beautiful here and we are having a wonderful time.
We had an incident at the Library the other day. Thank goodness I had a helper with me. “L” is fantastic with Roslyn and has been teaching her a lot of sign language (we use Auslan here) and Roslyn always attempts to say the word when she signs. Anyway after having a ride up and down the elevator Roslyn pounced on the machine at the counter that prints the tickets with return dates, then the pad that scans the books- attempting to be quite destructive. I had to put my body between the equipment and her to stop her. I just could not underststand why she was doing this- I even told her we could go play with the toys. “L” got Roslyn’s iPad out and then Roslyn indicated that she wanted to go to the car and started signing car as well. So all that behavior was so she could leave.
Maja, I have found that the iPad does not take away from my daughter’s speech. We use proloquo2go and she always attempts to say the word herself when she uses it. It is the same when she signs. I actually think the sign language is increasing her spoken language. Roslyn also had limited interests when it came to play and obsessed over bubbles and water. She would fly into a rage if you stopped her. She would search out water in the bathroom, even the toilet if you kept her away from the taps. She would get angry if the bubbles weren’t perfect that she blew. The best thing I have done lately is have an Occupational Therapist teach her how to play. Also I sat with her and played with bath toys at bath time. Now she can play in the bath and isn’t getting out of the tub traipsing water everywhere demanding more and more bubble bath. It helps that now I have a carer in the house a couple of times a week “L” who I ask to just play with her. It has broadened her interests and she isn’t so obsessed about water and bubbles. She is now pointing to the toy catalogues showing us toys she wants for her birthday.
This is fantastic! What amazing news and I’m just so pleased to hear about it. I have heard from others as well that signing can be beneficial. I also know of a couple other people who use that program you mentioned on their iPads. I love that Roslyn is pointing to toy catalogues, this is also such a wonderful sign of terrific progress!
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Hi thanks for posting this up. Great blog love the messages you put up.
Love this and all that you write. My son, Henry loves his old “Signing Time” videos- so do his older sisters..there is an app now, too. Emma, may want to check them out.
Henry used to do something similar when he was upset, but he would threaten to pinch someone else ..he would rarely actually pinch,more of a, I will do pinch my sister if you don’t do as I say kind of threat. he would do this all with a glance and a gesture..so subtle, but communicating so much…it’s all in the eyebrows:) Henry types to communicate, too. Signing, typing, flashcards, everything, have only increased his verbal communication. he uses assistive chat and proloquo2go.
It’s wonderful to read about Emma. Your great love and respect for her are evident in every word you write. She sounds like such an awesome kid.
This is one of most practically brilliant article I have read in some time. Really like the way you have touched on different topics related to languages. We here love languages as well. By the way I really like the overall look of your
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