Hand movements, ritualised behaviour and feeling safe

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elsapelsa
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23 Dec 2017, 10:52 am

This is my first post.

I am pretty sure my eldest daughter (8) has aspergers. There is plenty of evidence, extreme strengths (art, creative thinking and writing and particular abilities) as well as some big challenges - mostly meltdowns, panic attacks, a need for a very particular order in communication and ordering of information and belongings. It has always been there but got much harder for her, and us, to manage once she turned 8.

So on to my question. Since October she has started doing these hand scanning movements. Imagine holding a hand cupped like a crescent moon and using it to scan physical spaces. Then cup the hand again but this time on a horizontal line and rescan the same space. If she is interrupted or spoken to the scanning restarts. The scanning mostly happens when she is anxious and when she is moving or leaving a space. Examples of times of high tension would involve getting off a bus, leaving a shop or leaving the house to go to school. She has lots of transition anxiety so this is a coping strategy of sorts and once she has scanned she happily kind of skips off and is back to herself again.

First, can anyone offer any input on these scans? Are they a form of stimming? Are they OCD? Or just a habit she has invented and then gone with? She is extremely good at coming up with coping strategies and self-soothing techniques so I see them as that.

Second, obviously we look a bit like the cast from the OA or some tai chi group when we are out and about. I am fine with that, but should I encourage her to move to more concealed forms of "checking"? As we are a few months away from diagnosis and we have had zero help from doctors or school, we are on our own and I kind of feel if these scans make her feel better and allow her to cope, just let her get on with it but of course don't want her to start feeling more trapped by her rituals than she already is.

Thanks for reading.


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Glflegolas
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23 Dec 2017, 6:48 pm

I don't know enough to fully answer your questions, and nobody here can diagnose your daughter with an ASD. But I'll do what I can.

Whether or not the scanning movements are a stim or an OCD ritual depends entirely on your daughter's motive. Does she do the movements to protect herself from what she perceives to be imminent danger? Then it's OCD. If the scanning feels purposeless and natural to her, then it might be a stim, although from your description it sounds to be more OCD than anything else.

That's not to say that the OCD and ASD aren't linked. It's possible to have both conditions together. A full diagnosis is the only way you can be sure, and if I were you I'd try to find a specialist who has experience with ASD in girls and women. Otherwise there's a good chance they'd overlook the ASD (if present) and simply find OCD.


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23 Dec 2017, 9:58 pm

That's an interesting topic - it brings me back to when I was in elementary school. I'm autistic with sensory processing disorder and motor skills issues. In my case these are somewhat more pronounced due to anatomical issues with the corpus callosum and cerebellum. When I was a kid I used to use hand motions to help me understand and remember what I was seeing. "Scanning" is a really apt description. I would pass the edge of my hand or a specific finger across my field of vision in either linear or curved motions. I still do it sometimes when I'm not worried someone will see. It helps me to encode visual field information and get it into memory in a way that allows me to remember it later. It is similar to running your finger below lines of text in a book or on a computer screen as you are reading, but applied to non-textual visual input. I can literally feel the way it stimulates my brain when I do this - it is like waking up a part of my brain that easily gets tired or overwhelmed from challenging sensory input and getting that part to work with my memory and cognitive processing. It's not a liability - I had a very successful 38-year career in high-tech work, including computer programming, and placing or moving my hands and fingers over the software code or system design diagrams I was developing enabled me to do some very complex work - work that many non-autistic engineers couldn't handle. 8) Some of its usefulness may also be related to my memory being pattern- and visual-based, rather than verbally-based. I was extremely embarrassed to be seen doing those scanning motions when I was younger and I learned to hide the motions, but that comes at a personal cost. I need the scanning more when I'm anxious, in a new environment, or fatigued in order to wake up and coordinate action between the correct brain nuclei, which sounds similar to your daughter's case. I don't have OCD. I do have anxiety and I tend toward repetitive behavior/"rituals" and that was true in the day-to-day tasks of my professional career as well - for instance I was a manager for years and I would consistently approach doing performance reviews for the folks I managed in the exact same way each time; I function a lot better that way and when procedures changed, I would be at a disadvantage until I learned to repeat the new procedures through repetition, but after that I had an advantage over others and was extremely organized. It's just a different way to function in my case and I have both significant deficits as well as great strengths and fortunately I was able to find academic and professional paths where I could leverage the strengths. I grew up in the 1960s and 70s and got a lot of disapproving messages, bullying, ostracism, and the like relating to rocking, stimming, and odd eye motions and scanning with hands and that had pretty negative effects on me - I still am challenged by the effects and stigma of that personal disapproval.



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23 Dec 2017, 10:12 pm

elsapelsa wrote:
This is my first post.

I am pretty sure my eldest daughter (8) has aspergers. There is plenty of evidence, extreme strengths (art, creative thinking and writing and particular abilities) as well as some big challenges - mostly meltdowns, panic attacks, a need for a very particular order in communication and ordering of information and belongings. It has always been there but got much harder for her, and us, to manage once she turned 8.

So on to my question. Since October she has started doing these hand scanning movements. Imagine holding a hand cupped like a crescent moon and using it to scan physical spaces. Then cup the hand again but this time on a horizontal line and rescan the same space. If she is interrupted or spoken to the scanning restarts. The scanning mostly happens when she is anxious and when she is moving or leaving a space. Examples of times of high tension would involve getting off a bus, leaving a shop or leaving the house to go to school. She has lots of transition anxiety so this is a coping strategy of sorts and once she has scanned she happily kind of skips off and is back to herself again.

First, can anyone offer any input on these scans? Are they a form of stimming? Are they OCD? Or just a habit she has invented and then gone with? She is extremely good at coming up with coping strategies and self-soothing techniques so I see them as that.

Second, obviously we look a bit like the cast from the OA or some tai chi group when we are out and about. I am fine with that, but should I encourage her to move to more concealed forms of "checking"? As we are a few months away from diagnosis and we have had zero help from doctors or school, we are on our own and I kind of feel if these scans make her feel better and allow her to cope, just let her get on with it but of course don't want her to start feeling more trapped by her rituals than she already is.

Thanks for reading.


That sounds like stimming. And you're right it's a self soothing coping mechanism. This is a good explanation:



elsapelsa
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24 Dec 2017, 2:19 am

Glflegolas, thank you, I should have mentioned we are on the waiting list for one of the main centres in the uk that has loads of experience with girls. I think my daughter might also have pda. And they should be able see it if it is there. I don't quiz her too much about her hand movements and if someone looks directly at her she will tell them that is rude. She clearly feels it is a private thing. When she started doing them, I asked, and she then said she does them to check she has got everything. I would say they have evolved, she is very concentrated when she does them and it is almost like a brief meditative moment to regain control.

Eyedash, thank you so much for sharing. What you write is extremely useful and more than I could ever have wished for in posting. In many ways what you describe sounds spot on. My daughter talks of cataloguing images in a picture app inside her brain where she can take them out and look at them. She can manipulate the original picture but the original is still always there. She is extremely talented visually. I am her mum so I probably would say this but her art totally blows me away. Just like you suggest she needs these movements more when she is tired and at certain junctions and can go for very long stretches without them when she is relaxed. If she feels uncomfortable with people watching her she will do a small jerk in moving her elbow up and a backward stare but clearly this does not satisfy her to the same extent. Sometimes when she does them it is almost like you hear the concentration she puts into it it is very intense and as I said the most similar thing I could imagine is deep meditation or concentration and she is rigid and entirely focused to then come out of it and be relaxed and soft again. I have been asking if she does them at school and nobody has seen them but the headmaster called me over the other day and said he had walked past her classroom and she was doing it. Entirely in her own world were his words. I would more describe it along your lines of her activating a different part of her brain (for safety, for security, for information, for better processing). I know she has mentioned them to her best friend as she does them constantly and at ease in front of her.

So now for the big question. Should I try and help her make these movements less socially visible, should I try and get her to evolve them into somehing more socially acceptable. My instinct is 'no' but don't want them to be a cause of unwanted attention for her. I *know* my daughter has autism and I strongly believe she will embrace having autism so it might be that she can keep her hand scanning movements and feel just fine about it.


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Last edited by elsapelsa on 24 Dec 2017, 4:52 am, edited 1 time in total.

elsapelsa
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24 Dec 2017, 4:48 am

EzraS, thanks for the video. I do think my daughter stims at other times, fingers repetitively moving over glossy paper, circular hand movements around objects on a table, that kind of thing. But I am still a long way from understanding stimming and what stimming feels like to the brain. I would say most of the times I see my daughter doing what may be stimming it is a way to take a breather or get time out and calm herself down, like stepping off the world for a minute or two but with the underlying rationale that she is regaining composure. So hard to know if it is unconscious or not. As I say, still lots and lots to learn. So thank you all for helping me.


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AceofPens
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26 Dec 2017, 1:25 pm

I would have to say that the hand gestures sound a lot more like OCD than an ASD trait. It's a common comorbid. I suffered from it pretty severely as a kid. I was about your daughter's age when it really worsened, too. I used to "scan" my body repeatedly and become stuck in "loops" where I repeated the action over and over again. If I was interrupted or distracted in the middle of a "loop" I would have to start over again, because the number of times I performed it was vital to finding satisfaction. That called for intense focus, which bordered on painful at times. I had to be absolutely certain that I didn't miscount. That feeling is very distinct from stimming. Stimming is like pouring all of your energy into a physical action to lessen or increase an intense emotion. OCD rears its head as a temporary emotional itch. If your daughter is acting normal, becomes irritated and performs these actions, then goes back to being just fine, I would say it's not a stim. (Though it's important to mention someone can have an action that acts as both a stim and a compulsion on different occasions. I tap as a stim, but also as a compulsion.)

I don't think you should encourage her to hide it. On the one hand, if it really is stimming, repressing non-injurious ones can be detrimental to her mental health. At the very least, it's controversial because they're an important coping method. And if it's OCD, you really don't want her to hide it. I hid mine, and consequently, no one ever knew how severe they became.


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EyeDash
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26 Dec 2017, 10:41 pm

elsapelsa wrote:
So now for the big question. Should I try and help her make these movements less socially visible, should I try and get her to evolve them into somehing more socially acceptable. My instinct is 'no' but don't want them to be a cause of unwanted attention for her. I *know* my daughter has autism and I strongly believe she will embrace having autism so it might be that she can keep her hand scanning movements and feel just fine about it.


It actually helps me feel somewhat better about my childhood knowing others naturally use these strategies in processing information and memory. I used to make hand movements and eye movements that helped me and I used to rock some or bob up and down slightly or wag my ankle in classes ("stimming") and I got verbally and physically bullied for it. I learned to hide those things in ways that noone could see, without anyone actually helping me - I would overlay visual grids and "hallways" and use slight eye muscle contractions to replace the hand and finger scanning. And I have learned to stim when I'm anxious or overwhelmed by moving my tongue up and down over my front teeth or by making microscopic movements of my fingers on a pen when I hold it or rocking my neck muscles so slightly they produce no visible movement. So I don't get the sorts of negative reactions from people that I did when I was young. I can only share what has "worked" for me. But I'm now 60 and there's a huge cost to all the hiding and pretending to be "normal" with typical reactions in the face of the ignorance and intolerance of others. That is a loss of authenticity and vitality and spontaneity. By nature I'm sometimes flamboyant, verbally impassioned, physically animated, fascinated and absorbed by patterns in nature, ecstatic to play with animals. But over the decades of repressing these for fear of social ostracism, I've become dissociated from these vital parts of myself. I used to deeply wish that I could trade off some IQ points for happiness and spontaneity. I wish I had just been myself and social acceptance and career success be damned. Maybe there's a balance that can be struck, or at least some flexibility. And at various points in my life, the normalcy charade has become like a prison - like after getting caught in a lay-off after a 38 year career or after divorce. Then there's a tendency to have what's called an "autistic crash" - when the act stops working. I look for how others handle this on WrongPlanet and I don't know if there's a single good answer. There's a good article that helped me understand autistic crashes at: http://www.autismdailynewscast.com/what ... paddy-joe/



elsapelsa
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31 Dec 2017, 3:49 am

Thank you for your message eyedash. I am so sorry for the abuse you suffered as a child and the amount of concealing you have had to do as an adult. It has been very helpful hearing your account in terms of how to relate to my daughter. As it is we have been going out and having nice lunches together one-on-one, going to the art museum, and going to the fun fair and opera (she loves opera!) and she just stops from time to time and does her scans. I know when to expect them now and I know what she needs from me - to just stand still and wait and I can factor them in most of the time. I am still unsure whether she has autism, I read and I feel convinced, then get confused again. It is hard for me to come to grips with what is just behaviour with lots of autistic traits and what shifts that to being classed as being autistic or a person with autism. I do however know a little of what it feels like to pretend to be 'normal' and what it feels like to mask. I went through all my teenage years carrying around a lot of angst and concealing difficulties in mental health. I have graduated top in each educational institution I have been at and outwardly I have projected strength and togetherness but it has often been with a severe price to be paid in terms of mental health. I went straight from academia to motherhood so I am still unsure how I will handle working life. I do find social life hard. However, I like to think I have reached a point where I just don't care too much about how I come across to other people anymore so perhaps it will go well. My daughter's ability to let it all out and project everything has been so enlightening to me as a typical masker by nature and who internalised everything. Everything is a new ability to learn and whether it is indeed autism that underpins my daughter's anxiety, frustration and ritualised behaviour or not, I will be forever grateful for the reading and research opportuninities this time has given me and how much more i feel I understand about the brain and myself. I have read some amazing stuff in this process. It is interesting that you mention an autistic crash as whilst my daughter has some issues I can link back to infancy, it has been since she turned 8 we really just saw a huge escalation in this behaviour and it has totally floored and crippled her for a period. Thank you for all your help.


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elsapelsa
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31 Dec 2017, 5:17 am

Aceofpens, thanks for your reply it was very helpful. I think the challenge at this point is working out whether she exclusively has OCD like traits, which she definitely does, or whether they are part of a bigger picture of AS. I believe it is quite unusual to have full blown OCD at age 8 but maybe it is not? My instinct is that the OCD is part of larger picture. Given that she has very fixated interests, lots and lots of demand avoidance and some very broad differences in cognitive processing in different areas - for instance, she is extremely capable in terms of executive functioning in some areas and can make incredible three dimensional objects out of a bunch of random stuff with incredible oversight and flexibility at one point and then other times conversations and social interaction are so extremely challenging because her processing is so fixed and inflexible. I would give anything to spend an hour inside her brain and get a real feel for how life feels for her and how she functions. At this juncture it is so hard for me in my process of understanding to not keep relating it back to myself and times of my life when I have felt or acted in similar ways. I have to keep telling myself that observable behavioural patterns do not all equate to the same origin and she might be operating from a totally different standpoint. Having felt the odd one out for a lot of my life it is very hard to determine how our differences differ! Needless to say, I am quite confused.


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