Parent of AS kid noticing twitching

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Hi,

I'm a parent and thought rather than posting in the parents' forum, I'd post in the general for a change. My daughter is almost 4 and recently, we've noticed she's started twitching, or developed a tic. I read a little bit before around the web before deciding to post.

The twitch, or tic, is a jerking of the head to the right. Almost like she's trying to shake the bangs out of her eyes but they're not in her eyes. I have a history of epilepsy, so naturally I also wonder about that.

Her next appointment is at Kansas University CCHD (Childhood development) at the end of this month and we will be bringing this up with them as this is a new development. What we were originally going for was to see about the fragile x micro-array they had suggested to rule out possible fragile x syndrome. While this appears to me to be a tic, my daughter is conscious and coherent, I have also had a variety of types of seizures. Some where I would have uncontrollable arm or neck movement, but the neck movement or twitch was scary as heck (I was about 16) as I was fully conscious and aware of the movement. It felt like my neck was trying to snap itself. I don't think this is quite as extreme. At least it doesn't look like it, but now I do wonder if these twitches aren't partial seizures (I can't recall specifics for this type of seizure that I had). I keep in mind that we're all different. Prior to me and my brother, no epileptic or autism history in family. Husband's side - his mum has it, but not like I do. Husband may be the one with autism, undiagnosed. He's the one who likes the devil in the details. Me, not so much.

Anyhow, with that in mind, any thoughts? The twitches or tics are fully conscious. She has just experienced a major change, which is to say we moved out of our apartment and into a house. She likes the house, but change is difficult for her, as it is with many kids on the spectrum. I'm not sure if the twitching started before or after we started moving house. I did read that stress and fatigue can bring on twitching. If it is a tic, are there non-medical interventions or might she be stuck with them? I am very familiar with seizure meds, which is what I suspect they might prescribe someone with a tic and not keen on them.

Have you looked into the possibility of tourette syndrome or a tic disorder? They can often develop at around this age. It might just be a new stim she's picked up. Have you asked her why she does it? Does it feel good? Does she feel as if she has to do it to release tension in her muscles? Is she able to articulate her inner experiences like that?

I was wondering about the Tourettes, but I don't think so - at this stage anyway. No, she's not good at expressing herself. She typically parrots a lot of stuff (I guess a lot of kids can do this at this age regardless of being on the spectrum or not). She attends a special ed class in the mornings and I'll ask if she liked school or how was school (try and use different phrases). She will mention someone's name in her class and that's about it (she actually might have found a school friend, which is odd and awesome at the same time). She doesn't know to express if it was good or bad and I've tried offering suggestions. Did you have fun...that kind of thing.

When you say stim: do you mean stimulation? I don't think she would enjoy this twitching because it's kind of sharp and it's more apparent when she looks a bit tired - unless she's trying to keep herself awake.

I have a son with HFA and a daughter with Tourette Syndrome. It is my understanding that the two disorders are genetically related. I am wading through a book called "Tourette Syndrome and Human Behavior" by geneticist David E. Comings, M.D. The author did a tremendous amount of research on Tourette Syndrome and the various ways the genes manifest in not only Tourettes but related disorders. It is not uncommon for Tourettes and AS or autism to be in the same family. If you have a hx of epilepsy, i would probably feel better to rule that out if i were you. But the tics can go with AS. My HFA son has some behaviors that are almost like tics, but not the jerky movements. More like compulsions that he feels he HAS to do. My daughter's tics are jerky movements of various parts of the body. It is not stimming for her; it doesn't feel good. But she can only keep the tics in for so long--she says then they "have to come out." At times she needs to leave class in school because she can't hold the tics in and doesn't want to be disruptive in class.

We ruled out seizures which made me feel better. I had been worried about that at first. She can hold her tics in for the most part in public; but at home when she is relaxed she can sometimes have the whole couch or chair shaking when the tics are at their most severe. It started as head and neck tics and now involves various parts of the body such as legs or entire torso. There are therapies that we have tried; CBIT (you can google it) was somewhat helpful. Neurophysiological therapy was also helpful but we need to start it again as her tics have increased in the last months. We are planning to do some meds to get her over the worst but hopefully she won't need them forever. Hormones and puberty are playing a part right now, which is common. Hopefully that will even out when she gets older. Hope this helps.

Hi,

I have Tourettes syndrome, and started developing the symptoms when I was 8 years old.

They can definitely look like a seizure, but they're not. Of course, asking a professional about your daughter's behavior would probably be best to do.

Yeah, puberty years are the worst, but as I've grown older, it is much easier to control it, and the urges to twitch are not as strong.

I hope you're able to find out what is going on. I certainly do sympathize with your concerns.

I have a tic where I snap my head to look behind me. It's an involuntary reflex do to auditory hallucinations. Like I think I hear someone behind me. Probably not what you are talking about. But still basically a false signal causing a sudden sharp head movement.

Thanks for your replies guys.

I had written a post but it vanished after I typed in a verification code.

StarTrekker, thanks for clarifying stim.

Marcb0t, thanks for your insight into the pubescent years. I started getting seizures at the age of 8. Just one, but nobody noticed. Figured it out the following year when a seizure was highly visible in the classroom. I've had control of my seizures with meds since I was 16. Came off them in 2006 to see if I still had epilepsy. I do. Wide range of seizures. But it's controlled, so that's good.

Probly.an.aspie, If my daughter turns out to have Tourettes as well, I will definitely get that book you mentioned.

I've already reached the conclusion where many people who aren't on the spectrum are looking for ways to 'cure' spectrum people, but the reality is, that's part of their personality (that's my humble opinion). Where the issues lie in many social situations and the developmental, I've come to look at 'how can we make this easier to cope with and less scary or stressful', rather than "how do we fix this". Make sense? I started reading a book on autism and I saw a few documentaries but the reality I've come to see is that we're all individual and no two 'patients' are the same, so having the insight from personal perspectives (because some things do work for more than one person) are sometimes better than a textbook doctor-patient initiative, if that makes sense.