I would have her tested. I was recently diagnosed with Asperger syndrome and I wish I had known that earlier. As a child I was just considered a clever shy girl. Kids on the spectrum can have friends, but social classes are supposed to help them become more assertive and make friends more easily as they grow up.
Thank you so much for responding. I would love to hear about activities that calm the nervous system. She is doing it when she is nervous or explaining something she has learned, etc. She also says that the tightening makes her feel better same with walking back and forth. I was thinking maybe having her talk to a Cognitive Behavior Therapist to help her deal with the anxiety (if she is having any) and her hand tightening, etc. I am also afraid that she may be picked on and act out because of it in the future, or isolate herself. Social she is not as bad, she initiates play dates (asks to hang out with a certain friend) and plays well, just not the talkative type and if she does it comes out all at once. I am trying for now to avoid the testing and your advice seems very good.
Hi there and welcome. I have a son with a developmental delay, sensory integration disorder. What I was told is that things become a disorder when they interfere with day to day life. Everyone has sensory issues (I hate holding a glass with condensation and wearing turtlenecks for example) but they are just our quirks without them stopping us from doing what we need to do in life. Does that make sense?
So, I think what your neurologist is saying is that a diagnosis probably won't change that much and you should go ahead and work on the things yourself that you see could bother her.
For example, her social skills. If she is socially awkward, you can teach her social skills. We did this with my son. My son does have a diagnosis but in truth, it was up to us to get him past some of his challenges. There are occupational therapy centers and child centers such as child focus/head start, etc. that run social skills camps. You can ask either your pediatrician or school counselor if they know of any and also do your own google search. My son did this and basically, a small group of kids work together with a facilitator that teaches them how to interact socially, how to ask someone to play and what to do if they say no, how to be flexible with other kids, how to hold a two way conversation, how to not interrupt, how to use the right voice volume, etc.
I also have many tricks for these sorts of things so if you tell me where she is having any issues, I might have some activities you could do with her on your own that could help.
The other thing I did for social skills was practice practice practice. I had play dates that were orchestrated by me to help my son with his social skills. They were typically one on one and I'd stay involved with the play date to help my son when needed to guide him through the process of playing with a friend. Once he mastered one on one, we'd have two friends over to help him with skills in a group. He's now 10 and still has things to work on but doing well overall.
My son has sensory and has some quirky things he's done on and off. One I called 'finger rolling'. he would hold his hands funny and roll his fingers up. It really bothered ME because I was sensitive to it and thought it would make him look weird to other kids and make him a target. That never really happened. But I did work on things with him--- gave him other things to do like make fists or put his hands together and press. Still a movement maybe other kids were doing but less obvious. But after time, with my son, I realized that when he did this he was either not regulated and his nervous system needed calmed down through activity or he was anxious and we'd work on that.
There are activities that you can do that calm the nervous system that might help with the movements that you are noticing. ?? I can tell you about that if you are interested.
So, to me, it does sound like your daughter is doing pretty well. I don't know if a diagnosis is necessary but am thinking that I would work on her quirks to help her and you can do that with or without a diagnosis. You also always have the school route to take and you could request a full evaluation. In our district, it's hard because there has to be academic interference for an IEP. My son has never qualified for an IEP because he has always done fine at his school work and he DOES have a medical diagnosis. Wacky how things are set up sometimes but what can you do, right?