Is it a stim or a compulsion?

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My daughter at various times over the past year has developed "compulsions" which seem to be behaviors she just does that seem strange. For a while she was tapping her dresser drawers, pulling her eyelashes, she counts while she does various things, and she gets certain ways of doing things that have to be EXACTLY the same or else it causes tremendous irritability. She cannot explain why she does these things and they seem like subconscious behaviors. I have been reading a lot about childhood OCD but it doesn't seem to "fit" as her "rituals" don't cause her problems-in fact she enjoys doing them. They seem to be a way to express/alleviate anxiety for her. I know adherence to sameness is part of ASD so how do you determine when it is part of AS or a comorbid such as OCD?

Her newest behavior which is getting very pronounced is touching her torso and then flinging her arms either above her head or to the side. She does this A LOT right when she gets home from school as she is veging out in front of the TV. It is pretty constant for about an hour. It picks back up around bedtime when she tries to fall asleep. These motions are very maladaptive looking (for lack of a better way of putting it). While they don't cause her any distress they do call attention to her, especially in class.

I am wondering if anyone has any way of discerning whether these are stims or compulsions (as in OCD) or whether it matters? The counselor we see said you cannot "fix" compulsions in OCD if they are not a "problem" to the person having them. In other words, if she enjoys doing these things then are they really OCD?

Those behaviors aren't all technically stims, but they are common to AS. A stim is a repetitive motion that helps relieve immediate anxiety. The arm flinging thing sounds more like a classic stim, especially if she does it over and over for long periods of time.

The AS behaviors that look on the surface like OCD are just motivated differently. People with OCD get a sort of superstitious notion that if they don't do something a specific way, something terrible will happen. For autistics, its to help cut down on the clutter of sensory stimulation. We are so easily overwhelmed by unexpected things popping up that we aren't prepared for, that its easy to unconsciously create compartmentalized routines and rituals attached to common everyday situations. When those routines are disturbed, it can cause severe agitation and even lead to meltdowns. The more day to day events we can plan and control, the less sudden, overwhelming surprises we have to face.

It doesn't sound like OCD at all.

She needs to come up with something she can use to alleviate the pressure that is less obvious and save the less appropriate ones for home. The movement you're describing is quite interesting. It reminded me of something you might do in Qigong or Yoga. It's almost like she's trying to push the bad energy away from her central body.

I had an inappropriate "stim" (I hate that word) as a child, but a teacher reinforced to me that class was not the time or place for it. I had never considered that it was a bad thing until then. So I just found something else to do. Would she be receptive to you suggesting that class is not an appropriate time to stretch her arms in that manner?

Most of this does not sound like need for sameness. The arm swinging may just be a stim. But it sounds like there is a lot of ritualistic behavior going on.

"They seem to be a way to express/alleviate anxiety for her."

This is the exact purpose of rituals in OCD. OCD is an anxiety disorder and the rituals relieve anxiety. Right now she may feel relief and enjoy them, but for most people OCD is progressive when untreated. It is true that these rituals may not have a negative effect on her life right now. That is because she is a child who lives at home with an understanding mother. This will not be the case when she is older. As she gets older she will be away from you more, especially in her teens and obviously adulthood. She will learn that her rituals are not normal or acceptable. She will learn to hide them from others which causes great internal stress or isolate herself so she can do her rituals. I strongly suggest investigating further to determine if this is OCD or not and having her treated. Living with untreated OCD is extremely difficult and it will effect every aspect of her life later.

It is true that need for sameness and OCD can be confused by a doctor not experienced in dealing with ASD. I went through this with doctors with my son. The difference between need for sameness and OCD is that in need for sameness it is just that - need for things to be the same. The cup must be the same every time I drink. My glasses must be in the same exact spot, not a millimeter off, before I go to bed. All of my pants need to be the same color. I always take this route to the bathroom, if I take another it causes me great distress.

OCD behavior is ritualistic. I must count to five before I open the drawer or opening it won't feel right. I must check the locks three times before bed or it won't feel right, if I check them two or four times, it is not the same feeling of comfort. I must blink 6x before getting in the shower.

Stims are just as they sound, stimulation. These behaviors are for sensory stimulation and can be used to obtain stimulation or distract from an outside stimulation; chewing on clothing, waiving arms, swaying body, tapping feet, jumping.

It definitely does appear that she is picking at her torso and flicking some imaginary thing aside or into the air. She does it with both hands at the same time. At first she was doing it almost like a fidgety type behavior but it has very quickly become something she does and doesn't realize she is doing. At first she was conscientious about not doing it at school but now she is doing it there and not realizing it-or realizing it and not caring because it has become a comfortable thing for her to do. Kind of like someone chewing their nails- it's a nervous, subconscious, fidgety thing for her.

I am unable to discern whether this is a "healthy" coping mechanism and let her do it or try to get her to stop/control it due to the negative attention it brings her. I've been somewhat ignoring it for a while now and it just seems to be getting more frequent. Last year she had chewing behaviors and gave those up due to kids making fun of her-now she will secretly chew her sleeves but this seems to be the same "type" of behavior-a mindless thing she does repetitively. What type of replacement behavior could I suggest she use at school? And I really don't even know if suggesting would work, these seem to have a life of their own-then after time for whatever reason they are replaced by something else.

We have this, DS calls it "equalness" and really struggles against it as he doesn't like how it makes him look at school. I agree, I don't think it is exactly like OCD though it does have that quality - I don't get the impression that he has any sense of thwarting impending doom, just that he feels compelled to touch things with each hand, etc. There's a thread somewhere on the General Discussion board about quirky behavior, it seems it's not that uncommon.

What I hate about it is that it's more ammunition for DS's low self-esteem.

Hi, these sound like tics. Specifically complex motor tics. My daughter (not AS) started similar behaviors (eyelash pulling, multiple motor and vocal tics-although at the time we didn't know what it was) when she was 4.

We took her to doctor this year over it, because she started the tapping/touching/counting/evening up behaviors you describe...literally all day long, it takes her forever to do things (we homeschool, so we know exactly the extent of the problem!!) We thought she might have OCD. After a full evaluation, she was diagnosed with Tourette's. Touching/tapping behaviors are considered tics if they aren't being done because of obsessive thoughts (like I have to tap each finger on this item or my mom will get into a car accident).

I had OCD bad as a kid and I picked my eyelashes, etc etc.
My answer would be that sims and OCD behavior are very similar, so much that when they are put under the Autism umbrella they can be treated the same. It's a matter of parents deciphering which can be used to progression's advantage, and which will only lead to regression or lack of progression.

To OP: I used to do these things and it most definitely wasn't tourettes and most definitely WAS OCD. Your best bet is to talk to someone who has been there. Doctor's cant always get inside your brain for these answers. Keep you mind open to different possibilities. If you don't could be focusing off-target.

Eyelash pulling is Trichotillomania, which is a form of self-mutilation; common with Autistics.
I wouldn't call that a tic.

I think OCD is a slippery slope type of a thing where we're involved. I find these discussions to be very frustrating, so I apologize if that comes through in this post.

People with OCD have compulsions that serve no purpose. They are rituals that need to be preformed for no good reason. They are cyclic in nature. They may have started to alleviate anxiety, but the also cause it. The ritual must be preformed or the sufferer believes something very bad will happen, so it causes anxiety until the ritual is completed properly. This can prevent them from simple things like being on time for an appointment and can take hours depending on the complexity of the ritual. I know two people who have OCD. It is VERY different from ASD stims and rituals. I also know of one child with an ASD that sounds like he's definitely got the beginnings of OCD, but it's not a simple ritual for him either. It is very complex and it must be completed exactly the same way every time. If something is not done the way he feels it should be, all hell breaks lose and his mother must start all over again. This has actually prevented the child from getting adequate rest because it can often take hours for them to get him calm and through the ritual again (the only one I know of is for bed). His ritual is interfering with his life and well being (as well as his mother's). That is more along the lines of OCD. His mother does not allow him to "stim" either - if she sees him doing something she considers to be a stim, she will interrupt the behavior and his stims are nothing like this ritual.

If Grace is incapable of discontinuing the ritual because she has a belief that it is protecting her in some way, I would certainly be very concerned. If the rituals are cyclic in nature and she can discontinue doing them if they're called to her attention with little issue on her part, I would be less inclined to believe that it's an OCD issue. I don't know the child involved and I am not a psychiatrist, but it doesn't sound that severe to me. I have a coffee making ritual that I have been doing for the last six years exactly the same. If I am interrupted I do get irritated, but I don't have to start all over again. I used to sit for hours when I was stressed and use a tweezer to pull the hairs out of my knees. I did this for years. If I had to stop it didn't make me want to freak out, but I was much more comfortable doing this for some reason. That's not OCD.

And I used to pull my eyelashes also. How odd. I stopped doing it when I was older and became interested in wearing cosmetics. Then I used to pull the mascara off my lashes. I think my mother scared me out of this telling me I wouldn't have any eyelashes when I was older if I kept pulling them out. I also used to peel off my fingernails. I never was a nail biter.

As far as something more acceptable, I'm not sure what would appeal to her. Can she have a fidget to bring with her to class or something along those lines? I'm not sure it would help, but I used to play with my jewelry or hair or would wrap papers around the end of my pencil to re-direct my energy sometimes.

I should have been more specific. My daughter didn't pull her eyelashes out, she just pulled on them. She'd do one side, and then the other, and back and forth etc. She does this with all kinds of things with her body, and a lot of the times is unaware she's even doing it...in her case, it's just another tic, not something she does on purpose or feels a compulsion to do, it just happens.

My experience with OCD with ASD
When I developed Ocd in my tweens, at first the thoughts and the rituals did not bother me, they seemed to be a solution to the thoughts that were in my head, but after a serious betrayl by a boyfriend...this system I created to deal with stress turned on me and seemed to have developed a life of its own that I could not control. I went downhill very fast as my mind seemed to be controling me rather than me control it. I could not find the words to explain why I did what I did. I was also afraid that if I did tell someone, what little control I had over it would be gone (go figure) Anyway, after hospitalization, I developed a ticking noise I used to erase the bombardment of thoughts in my mind that bothered me. Then later I would grab a part of my body for more emphasis when the ticking seemed to quit working. My mind was constantly attacked by thoughts that really bothered me and I did not want to think them.
later I used my finger in the air to erase the thought while ticking. I was made fun of alot for this...then I went on to blinking to rid the thought.
When I was under less stress, the Ocd was not as severe but always present. My parrents were really worried that I was having seizures, but if they told me to stop I would. They could not understand...and I could not tell them.
It was not until I was a psych major in college that I took an abnormal psychology class and learned that I was not the only person in the world that does this and 2 percent of the population had it as well. I was put on medication for it and even though I am on medication, the thoughts sometimes bother me, but I can ignore them and I still stim because of AS, but I dont have complusions.

I have a question, did your daughter have a bad case of Strep throat?...there has been a link discovered for severe strep throat and OCD. I know my Ocd began 6 months after a major case of strep throat.

Either way, the behavior of pushing way from her chest sounds like a compulsion. Ask her right after she does this if there is a thought she is trying push away. if so, that is not a stim. It starts out benign at first, but stress can cause it to get out of control. The fact she has picked up several different behaviors in short period of time, also tells me this is not a stim. Stim behaviors are usually rather consistant through the life of a person with AS, they dont multiply overnight like that...that is Ocd. It comes on fast and can send a person with AS into major decompensation quickly. She may not be wanting to tell you the whole truth, fearing that you could not understand what is going on, and it is important that you ask alot of questions like
Do you have thoughts that bother you often
Do you have to do something so many times till it feels right
Do you do anything to to try to make those thoughts go away.
etc etc

Early detection can prevent much suffering

I had OCD when younger, now i'm diagnosed as AS. The rituals described sound more like Asperger's than OCD. OCD doesn't really involve rituals like Asperger's, OCD compulsions are more like checking, cleaning, or collecting rituals.

Ocd actually does not fit neatly in any category as far as compulsions go... what matters is what is the purpose of the behavior.
Does it help ease general tension, and help focus....that is stimming
Is it used to "correct" or "erase" an intrusive thought...that is Ocd
do you have to do something in a certain pattern or shape or number or any other useless behavior until it "feels right" That also is Ocd.
Do you feel alot of anxiety if you dont perform ritual...Ocd

jojobean, thank you so much for explaining this. Prior to your post I was thinking it was not OCD and definitely not Tourette's, however after your post it all sounds very familiar.

My daughter has never had Strep Throat that I know of, although she has had a high fever and rash that could have been Scarlet Fever (with hindsight) but was never diagnosed as such (it was diagnosed as Roseola).

Earlier in the year (when her problems and stress at school were at an all time high) she was complaining of "bad thoughts" that she couldn't get out of her head. I got her into therapy with someone who was open to new and different approaches to this as previous therapists were ineffective and my daughter hid the things from them). This therapist, through music and oher alternative approaches, has been able to get my daughter to open up about these things somewhat (my daughter will convey these things through songs that she writes). Four months ago my daughter was talking about wanting to be dead a lot and this was when she was also complaining of the bad thoughts. The bad thoughts were described (by her) as visions that she could not erase from her mind. It was like a nightmare that just replayed and replayed. It was strange things. Like we had an incident where a neighbor boy forcefully kissed her against her will and told her not to tell anyone. This caused her to "see" the scene over and over and it caused her great distress. Now if someone kisses on tv she runs away or hides or won't watch that show again. She has a fear of kissing now (which is fairly typical but not to the degree that she fears it). There are other fears she has that she describes as "bad thoughts". I posted about this previously here. http://www.wrongplanet.net/postt141303.html

Those thoughts seemed to go away when I removed her from the public school and the extreme lack of support and understanding. However, around that time she developed the ability to actively disassociate (veg out and be nonresponsive). She still employs disassociation somewhat often. This new behavior seems to be most prevalent at home so I know she CAN suppress the need to do it. I don't feel she is doing it to suppress a thought but I have never asked her that. It doesn't seem to serve a purpose but perhaps I am just overlooking it.

So, what type of "help" should I get her? She is very fearful and mistrusting of drs, therapists, etc and my struggle is that she will tell me these things and not tell them. This is always my frustration. She tells me problems at school and I go and talk to the teacher and they feel she's "fine" because she doesn't actively convey distress in class. She is noncompliant, nonresponsive or mute and they see that as a discipline issue (evolved from an enabling mother). Sometimes I think I should audio or videotape but she sees this as a betrayal and she confides in me with the caveat that I mustn't tell anyone.

Thank you so much for taking the time to explain this for me. How can I prevent more suffering for her?