This sounds like RLS... but it's autism?

[Aiken]

This is a story about a 13-year-old girl in Toronto who has autism. In it, she describes why she moves all the time. In the video and in the story (with its accompanying conversation with Carly), every thing I saw her say about her need to move was like something one of us would say.

Here's the CNN video:

http://www.cnn.com/video/#/video/health ... c.girl.ctv

Here's the original CTV story:

http://www.ctv.ca/servlet/ArticleNews/s ... hub=Health

And here's the conversation:

http://www.ctv.ca/servlet/ArticleNews/s ... /20080217/

Here's a quick recap of what I found interesting:

You dont what it feels like when you cant sit still because your legs feel like they are on fire Or it feels like a hundred ants are crawling up your arms

(sound familiar?)

WHY DO YOU NEED TO "STIM"?
Because if I don't it feels like my body is going to explode
It like when you shake a can of coke and open it just a little
All the coke finds its way out

(sound familiar?)

This one would depend on exactly why she likes deep pressure:

DOES MUSIC OR DEEP PRESSURE HELP?
I like listening to music it does make me feel good and I like to be squeezed but not usually when I am upset

I know a lot of people here like kneading and pressure, so maybe.

Anyway, the CTV story included a contact for people who have questions for Carly, so I sent an email that said these movement symptoms actually sound very, very like RLS, and while it may be completely unrelated, it would be worthwhile to check into the possibility that she may have both autism and RLS, or that autism may have an RLS-like facet to it. I went into a lot more detail (you know me) and suggested this site and rlshelp.org as well, in case there ended up being a connection.

If you think about it... how would you behave if your entire body, inside and out, felt like RLS? I mean, most of us have it in two or four limbs, sometimes our torsos, sometimes our faces or even our genitals, but imagine if your whole body, every single cell, from top to bottom, inside to out, felt like that? Or, worse, that it wasn't just touch that felt weird, but sight and sound and taste as well? I really wonder if it might be something similar. It may not be RLS, but it sounds sooo familiar...

Whatever it is, I hope she finds some way to treat it. To have your brain shackled by autism must be hard enough, but to couple it with something so similar to RLS just sounds terrible.

[SquirmingSusan]

Thanks for posting that, Aiken. It was very interesting. Amazing how she learned to communicate so well with the computer. And yes, it does sound like RLS.

[pedrime]

Reading your post truly fills my heart with hope for humanity. That you took the time to read and evaluate the symptoms of someone you don't even know, send a follow-up email....who knows how your input may vastly improve the girl's life. Boy am I glad I found this site--helpful to me and illustrates what wonderful people are out there silently helping others. Thanks for brightening my day, Aiken.

Meg

[becat]

Hi Aiken, thank you for putting this up.

I know that with 2 people in my family, one non-blood related, and the other born with the cord around his neck, this seems to be wild behavior to many that have not been around it.

With touch it's so indiviual and most bad cases of Autisum, don't lke touch, some can't handle it when they are ready. The pressure is common, at one place locally, that I know of....they sandwich the kids between big rubber balls and add a little weight to it for that good pressure.

With that said, yes she really could have RLS, but knowing the two and have met so many more, they are almost overwhelmed at any family gathering because even nosies are a physical thing to them. I often find one or both, keeping away from the busiest part of the house, because it's too much. To touch them on top of all of that could very easily cause an eruptions.

Hope that makes sense. Even clothing is important because it sems their skin is overwhelmed as much as thier minds. WHat we can tune out, they often have to learn to, just to have a good day.

Lynne

[ViewsAskew]

I also have one in my family on the autistic spectrum. He also has Tourette's and OCD. Many on the spectrum either have OCD or have a lot of obsessions/compulsions.

What's fascinating about all of this is that dopamine is involved in everything here (except the spectrum). But, all of these associated disorders respond well to drugs that affect dopamine.

So, I guess either some of what is experienced in Carly's body could be RLS and has been thought of to be self-stim related, or that the self-stim stuff could be a lot closer to RLS than people thought.

If I can find it, there is another wonderful video of someone on the spectrum....

[SquirmingSusan]

My daughter has some "Aspie" traits, and likes to think of herself as having Aspergers, but it's not enough to be noticeable except by a psychotherapist or someone else who is familiar with the syndrome. Mostly she's just really nerdy - she invents languages for fun. I guess I never realized that about being sensitive to touch and sound, but it sure makes sense. She has hyperaccousis, and never has liked to be touched. Noise does seem to hurt her physically, especially of a lot of people are talking at once.

It's all so interesting, the workings of the human mind....

[ViewsAskew]

Really interesting she likes to think she's an Aspie. My nephew finds a lot of solace in the label - makes it "normal" to be how he is. I know two other adult Aspies, however, who refuse to accept the label. Maybe knowing of it early is important to being comfortable with it.

By the way, here is the video link I mentioned earlier.

http://ballastexistenz.autistics.org/?p=287

[Aiken]

Susan, I'm actually a lot like your daughter. A few years back, my wife described aspergers to me, and it all felt very familiar. I'm quite functional, but I have many of the traits in small doses. I can't bear loud noises: she has to vacuum when I'm not home, and I really dislike speaking loudly enough for people to hear me clearly, though I try to do it anyway for the sake of courtesy. I often don't like to be touched because it's sort of a localized sensory overload, kind of like being tickled. That part is actually pretty miserable when the RLS is going. I also have some of the personality traits. I took a test after we talked. I can't remember if it was for autism or specifically asperger's. It put me a few percentage points into the bottom end of the spectrum, which was quite a remarkable thing to discover about myself. It certainly explained some things, and made me feel a little less like I was voluntarily at fault for certain shortcomings I have. Edit: Heh, just like Ann said about her nephew while I was posting this.

I don't think it would be remotely fair to truly autistic people to claim I'm autistic. I'm not, really. I'm pretty functional. I just have some of the traits and tendencies and can, in a limited manner, understand why they react to the world the way they do. I often want to react that way myself, especially when that damned vacuum cleaner is going and I want to run away screaming, but I'm lucky enough that I usually have good enough filters to deal with it.

Edit: And, again, this makes me wonder if there's some similarity. Not necessarily cause/effect, but maybe my one step into the autism spectrum in some way affects the nature of my RLS. Like I said, being touched is much worse when the RLS is going. When it's not, I'm kinda oversensitive and mostly prefer not to be touched, but when it's going, I just can't be touched, period.

[SquirmingSusan]

Aiken, do you know your enneagram type? I'm guessing from your description of yourself that you're a 5, as is my daughter. You can click the link to my website and read about 5s or go here: http://www.enneagraminstitute.com/TypeFive.asp Most people with Aspbergers are 5s, and the 5s in general tend toward being Aspie. If you're a 5, you're in good company - Albert Einstein, Bill Gates, Isaac Newton and other brilliant people.

My daughter has known about the enneagram types for a long, long time since I teach workshops on it, so she's comfortable with her "type." And her therapist did say that she is Aspie-ish, without officially putting it down on paper. But yes, she does like the description, and finds herself in it. What I don't like about the label is that she uses it as an excuse - which it is, but it isn't at the same time. If that makes sense. Anyway, she's perfectly delightful in her own brilliant, sensitive way.

Now that I've totally hijacked this thread, um, let me say that she doesn't have RLS.

[Aiken]

Susan--

Well, I can't say I typically put much stock in theories about personality types. Most of them manage to cover everyone with every type, so of course when someone determines they are type X, they can usually find a way to identify with it and confirm it. As you might expect, this makes me somewhat cynical about them.

However, I have to admit that, even after cynically checking types 1-9, and indeed finding traits here and there that I identified with in each, there was always something that disqualified each of 1-4 and 6-9. Type 1 was very close, but one aspect was dead wrong. Types 2 and 3 were kinda close, not bad, but not great either. I couldn't find anything inappropriate about 5, though. I'd give type 5 about a 96% accuracy rating. (Type 1 was about 75%, everything else was maybe 60% or less.)

I also gave the type 5 audio track a quick listen, and again, it seemed pretty accurate.

I'm not really sure what the benefits of knowing a personality type really are, but it's pretty interesting that type 5 really was the most appropriate. It was also interesting to see the "levels" of the type, from most to least healthy, to see what my path to enlightenment is, so to speak. It was a good read.

I've read before that people who are autistic, or have autistic tendencies, do tend to have a lot of personality traits in common. I'm not surprised that type 5 is common. Type 1 has some of the traits as well, since I've read that integrity and truthfulness are important to autistic people, who have difficulty fathoming or accepting the occasional need for lying--truth is truth, nothing less.

I wonder how many RLS sufferers are type 5. More than 1/9?

[ViewsAskew]

Hi Aiken,

Being a psychology major for my BA, I just adore personality theories . But, the enneagram is about my favorite.

That's because to me it IS useful.....for me. The premise is that at some time as a child, a very painful thing happened - a learning experience - that drives our personality development from then forward. Instead of being the total person we COULD be, we develop based on a need to protect ourselves based on this event/mesage/fear.

For a 5, the unconscious childhood message is that it is not OK to be comfortable in the world. Makes sense that someone on the spectrum would integrate this message - they do not feel comfortable. The basic fear of the five is of being useless, incapable, or incompetent and the desire is to be competent. The unheard message (what they failed to hear or wasn't ever said) is that your needs are not a problem.

What this has done for me is to help me see how I am still protecting myself based on these erroneous messages. And how to let that go so I can be the person I was intended to be, rather than the sort of "fake" person my mind set up to protect me from that basic fear.

I love the Riso and Hudson book where they discuss a continuum of self awareness in relation to our number and what we can be if we
transform our personality into essence".

Another benefit for me was when I was in the midst of a painful breakup - after ten years, I found myself having been "cheated on." I just couldn't understand HOW or WHY he could have done this. I had just started reading about the Enneagram and about 2 weeks before finding this out, I'd bought the Riso and Hudson "wisdom of the enneagram" book.

While angry, hurt, crying, and feeling that I'd been kicked in the stomach, I stumbled through info about 4s (and realized that this man was a 4). What I read sounded like I was reading about THIS MAN! And, it explained to me why he did what he did. For weeks I had been saying, "How could he have done this?" "Why, oh, why, after all we meant, could he have done this," etc. I was able to say let go of my anger and realize that he had done the best he could - and let him leave my life without wanting to either punish him or ask him back.

It was one of the most healing moments of my life. I don't try to ever label other people - though you often can figure out what those around you are. I also now understand better why some of my relationships with other people work better than others.

Mostly, in relation to other people, it helps me to let them be who they are. When I can say, Oh, that 1 didn't mean to be critical to me specifically, they just need to have things be perfect, it helps me let go of something that otherwise might bother me. Should I be able to let go anyway? Well, it would be easier, but this gives me a tool to use when I haven't the ability to do it just because.

[dogeyed]

One thing about autism, the senses are overwhelmed, they can't process everything at once, so they focus on singular hypnotic type stuff. Now, the similar thing about RLS is, the mind is overwhelmed with discomfort, so you can't think straight when an attack is going on.

Me, I also have chronic back pain, and so my thoughts are jumbled. My neurologist explained the connection this way: The doctor talked to me and then began to tap my leg with his folder, very distracting, and he said that's how it is with pain, it distracts the mind to where it can't organize itself properly. By the way, during that exercise, I was angry and empty-headed, all at once. Cool, huh?

Just food for thought. Thanks for the thread, it's been interesting. I'm interested in autism.

[becat]

Awesome way to explain that.

I honestly can't thnak you enough for sharing that.

Spot on, Dogeyed! Totally cool!

Lynne

[SquirmingSusan]

I wonder how many RLS sufferers are type 5. More than 1/9?

I would love to know a breakdown of RLS sufferers by enneagram type. My guess would be that the three thinking/head types (5,6,7) would have more issues with RLS because we're just more fidgety and anxious in general. Which is related to the unique brain chemisty and overdeveloped neural pathways of each type... They've actually been able to break down the types by how each utilizes seratonin, norepinephrine, and dopamine, and also study things like pain tolerance using EEGs. I was in one of those studies, but never really did find out the results.

Now if I could just get everyone who has RLS to identify their enneagram type...

[Aiken]

I heard back from Carly's mother. She, too, believes Carly has RLS. She's been doing research, and has been working on her local doctors, but she's finding them very conservative. (Sound familiar?) I passed on Dr. B's contact info and explained that he can often give someone good direction when they're at a dead end locally. At least Carly is currently taking a couple of our more common meds, so I'm hoping she's getting some relief there.

Anyway, if you couldn't tell from the video, Carly seems to be in good hands, and I'm relieved to know that if she does have RLS, it's not going to go undiagnosed and untreated. Cross your fingers for her...