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Night Terrors and Autism: Night Terrors are Not Just for Children

Clown Nightmare

Night Terror or Nightmare? Aren’t they the same thing?

The simple answer is-no. Nightmares happen during REM (Rapid Eye Movement) sleep, during that time where you are in the twilight area of your sleep, on the cusp of being asleep and awake-during light sleep. That same is not so for night terrors.

Night Terrors happen when a person is in a deep sleep, when there is usually no dreaming. The deep sleep accounts for your awake appearance at times, when you still are unable to recognize anyone or even where you are-in essence you are still trapped within your night terror.

My ASD Children have night terrors.

If you have a child with autism, you will probably recognize this scenario. My middle son (9) has constant night terrors. He flails around in his sleep, often punching, screaming, moaning, crying, whining-and we cannot seem to wake him out of it. He will sit up, look at his father and me, and still be lost in his “nightmare”. Oftentimes, waking him is unsuccessful and we just have to wait for him to calm down and settle into a seemingly more relaxing sleep.

(I will use the term nightmare and night terror interchangeably from here on, although we have already established they are technically different.)

Aspie Teen (14) still moans in his sleep, but when he was younger his nights were filled with blood curdling screams. The scenario looked much the same as with my 9 yr. old; he was difficult to wake, if we managed it at all.

Night Terrors and Lack of Sleep

Research shows that night terrors can be related to lack of sleep, which to me does make sense. ASD children and adults are notoriously bad sleepers. We have difficulty falling asleep, difficulty staying asleep, difficulty waking up, and experience daytime sleepiness (sounds fun doesn’t it?). This difficulty with sleep can explain why we are also prone to night terrors.

Thinking back to my own childhood, I always experienced “nightmares”. As an adult I can tell you that many of them are very much the same as one another….someone is after me, I am being hunted down, chased, shot at, or worse, now they are hunting, shooting at, or killing me children. I have had many nights that I woke up inconsolable, not even thinking that I was awake or that my night terror was “just a dream.”

I have physically seen my own children sleeping next to me, but failed to recognize that the dream was not real. I remember one such night where I had terrors all night that my husband passed away, actually he was hunted down and killed in my dream/nightmare/terror. In my dream, I kept waking from the dreams with his ghost watching me. In the night terror, I was losing my mind seeing him everywhere but he wasn’t real.

When I woke, or I should say when my husband finally got me awake enough to recognize him I started screaming that he was not real. It took a very long time, for him to convince me that he was real, and that what I thought was real was only a nightmare. If I, as an adult having these intense night terrors, trouble waking from them and recognizing the difference between nightmare and reality-can you imagine how much harder it must be for our children? How terrified they must be during the night?

They are back…

I began writing about the subject of night terrors today because in the past couple of months my night terrors have returned. Even when I wake, I tend to fall back asleep right into another horrifying scenario.

Being pregnant, I am getting even less sleep than usual-waking during the night to use the bathroom, and having to move a million times and reposition the four pillows I have surrounding my protruding belly still to find no comfort. To add to my lack of sleep, I could not find any good research on melatonin and pregnancy so I stopped taking it since I found out I was pregnant.

Fortunately, Aspie Teen’s pediatrician assured me during his appointment, that I would be fine taking it during pregnancy and shouldn’t worry too much about it-but I NEEDED to get more sleep. Can you imagine how bad I must have looked for my son’s doctor to tell me I needed more sleep? Not good.

I originally thought these restless terrifying nights were anxiety and subconscious fears coming out in my dreams, which still very well could be the case. The little man (9) grinds his teeth all night long, flails around, has terrors, and during some episodes has so much trouble waking out of them that he doesn’t make it to the bathroom. This means that no matter how many bathroom safety measures I bring in to keep them comfy, it doesn’t entirely help. I can definitely see the anxiety side of it in him-he’s been grinding those teeth at night for years!

Melatonin has helped him with both getting to sleep, staying asleep, AND the terrors though they are still present-especially when he is overtired. For me, I think I am on my way back to taking Aspie Teen’s doctor’s advice-back to melatonin which for me definitely lessened the occurrences of night terrors.

How about you? Do you experience these kinds of night terrors? Does your children? How have you dealt with them?

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Jeannie Davide-Rivera

Jeannie is an award-winning author, the Answers.com Autism Category Expert, contributes to Autism Parenting Magazine, and the Thinking Person's Guide to Autism. She lives in New York with her husband and four sons, on the autism spectrum.

13 Comments:

  1. Yes I’m a 39 year old with high functioning autism. Night terrors are very strong at the moment, I’m being hunted and killed various ways. Maybe it has something to do with poor sleep and disregulation of the flight or fight response system. Don’t judge but I used to smoke weed everyday and this stopped everything.

  2. Hi,
    I’m a late diagnosed Aspie with four boys, two of whom have been diagnosed as being on the spectrum. Reading this post was a mirror image of what I experience with my boys, even down to the grinding. One has night terrors and sleep difficulties, (Delayed sleep phase syndrome.) and extreme difficulties waking etc, the other, is often awake until the early hours and again has difficulty waking without prompting, but also, due to the demands of College or any social demands, he has to sleep in the afternoons to recharge his batteries, which is extremely disruptive to his day.
    My sons night terrors became so bad at one point that we sort advice from a specialist who prescribed him Melatonin. We were told that this was very safe and that it had no side effects. This information turned out to be be untrue in fact.

    My son was extremely reluctant to take the tablets as he said he didn’t feel right with them and for a while he stopped taking them altogether. Then he began to take them again for a period of extreme night time difficulties and had a severe neurological episode as a result.

    He’s had the occasional neck stretch to one side for many years, but never full blown continuous tics. One day he arrived home in a highly agitated state with such severe neck jolts and facial contortions that he resembled someone who was fitting. He had no control over them and within half an hour the tics had taken over his entire body. We took him straight to A&E. He was seen immediately and the consultant explained that the tics were a side effect of the Melatonin and he was prescribed a powerful Parkinsons med intravenously to stop his body jolting.

    After a good two hours of tics, It took a full 45 min’s once he’d taken the Parkinsons medication and to restore his body to it’s usual self. He was told to stop taking the Melatonin and also prescribed a tablet form of the Parkinsons drug to take if the tics returned. They did indeed return over the following few days, which surprised me as I understood that Melatonin was synthesized and expelled from the body pretty quickly after taking it. I’m not sure therefore, if the Melatonin had some element of a cumulative effect in his system, which caused the tics. Since stopping the Melatonin, and those few follow up episodes, they have not returned thankfully, but it’s left my son very wary of taking medication of any kind in the future. More notably, he now has no medication at all to help with his night terrors and sleep difficulties. I’ve tied many methods to help with his sleep issues, but none have been of any long term benefit. It’s impossible to describe the extent and impact this has on his life.

    The days following his hospital admission were also very difficult. He was in a lot of pain all over his body from the violence of the tics, but also slept continuously for several days. I assume this was the side effect of the Parkinsons meds.

    I guess my question is, do you know or have you heard of any others that have suffered such a violent reaction?
    Thank you in advance for taking the time to read this.

  3. I had a night terror today, at least I described how I woke up to a friend and she told me it was a night terror, but basically my entire family was methodically killed by Krampus and I woke up to my entire body having the pins and needles feeling, but multiplied by 100. We (Aspies/Asperger’s Syndrome) tend to have sort of sensitive to touch skin in the first place, so this was just borderline painful for me. Unlike most people, I don’t wake to night terrors screaming or yelling, I wake up in the fetal position, locked in place, unable to move. I have to stay in place for a while and just listen. I still haven’t recovered from the feeling, really, and am currently too scared to go back to sleep, approximately six hours later, and just describing in short terms what happened almost made me start crying.

    • Hi Alex,

      I’m sorry about your night terror! They are horrible. Many times I can not get back to sleep for many many hours, sometimes days even after them. I do not always wake up screaming, in fact, like you I rarely wake screaming. Most of the time I feel frozen, dazed, panicked, and sometimes hysterical. I have woken up not having any idea where I was (even though I was in bed) but the dream was so jarring that I couldn’t wrap my mind around my surroundings upon waking! Not fun.

  4. My 35 year old partner has Asperger’s and night terrors. For the first two years of our relationship he would come screaming out of the bedroom with a horrific look on his face. Since I am larger than he is, I would grab him, pick him up and take him back to the bedroom. A doctor later told me not to pick him up during the episode.

    They were happening a couple times a week and made it difficult for me to get a full nights sleep. My solution: One day, being sweet, I bought him a Koala Stuffed Toy. It was meant as a term of endearment. However, I told him as long as he was holding the Koala he wouldn’t have night terrors.

    We have been together for 12 years now. Currently, he has night terrors twice a year. When he pops out of bed, I simply say “Where’s the koala (which usually falls out of his arms). He stops, finds the stuffed toy and goes back to sleep. I hope you don’t think it’s juvenile, but it works for us. It may be a solution for you or your childs night terrors.

  5. I have a daughter, autistic, now 30 who wakes at night upset. It doesn’t sound exactly like this original poster’s night terrors, but it is very difficult for her and we lose sleep over it, which is bad because then we have a harder time supporting her. We have not done any medications for this. We have recently began thinking along the line of melatonin but have wondered if it will help. I’ve heard things that say it helps to get to sleep, but that if it doesn’t help early in the night it won’t help get to sleep. But since we’re not worried necessarily about getting to sleep but more about staying asleep we still wonder if it may help.

    Thoughts would be appreciated. I’ve also considered something like velarian.

    • Hi Raymond,

      I can certainly understand your concerns! Living with little sleep is no fun for anyone involved. I can tell you my experience with melatonin has been wonderful. It helped my kids to get to sleep AND helped them sleep more soundly for a longer period of time.

      For me, the melatonin does help me fall asleep, but I do still wake in the night and that is frustrating. What I found did help was taking a half of dose of my melatonin when I woke in the night. That helped me to fall back to sleep more quickly ultimately getting me more hours of sleep at night. I did find that the more sleep I got, the less frequent the night terrors became.

      Melatonin was an easy fix for me because I cannot take any kind of sleep medication, or cold meds for that matter if it will make me feel drowsy. Those types of medications give me panic attacks!

  6. My son has had night terrors since he was 6 and is now nearly 12. We have tried hypnosis, change of room, climate, sounds boxes, special bedding and has been under a London hospital for three years. He has had all medication that he is allowed and none of this has helped. He hs just tried to escape from a window on holiday and fell from over 5ft and did not remember a thing. It is and has consumed our life and my marriage and I really don’t know where to turn anymore x

  7. i had night terrors as a child, but apparently “grew out of them” – i dont think i get them anymore as an adult. my husband certainly hasnt mentioned me doing anything. LOL

    my son has had them. he does seem to get them more often when he is overtired and is late for his bedtime. its like clockwork, if hes late enough to bed, within an hour or so we are going in there to him fussing and crying. nothing consoles him, though we still try to get him to the toilet and get him a drink of water. sometimes thats enough and he settles. when he was younger and in the potty training at night phase, it seemed he would always have to pee when he woke up screaming and crying, and that would help it go away. he seemed to grow out of them as well, but he does still get them now and then.

    • I’m glad that he (and you) has grown out of them. I have had them my entire life to the point that they are just a part of the everyday. But–I did notice a correlation between my stress level and the amount (frequency) of the terrors. I think I am extraordinarily stressed both physically, and mentally now with the pregnancy and tantrum tot being unruly lately resulting in more frequent terrors. Even during my afternoon nap I am running, jumping, falling off trains.. (yup this was this afternoon). It feels like I get no rest when things get this bad.

  8. I’ve tried relaxation methods in the past so I might return to explore some of those options. A brief course of acupuncture really did relax me but I never carried it on to see the full effects.

    To be honest it tends to return to the current level when I’m a bit stressed, which has been the case in recent weeks.

  9. I’ve always suffered with them and recently quite a bit more (see my latest blog – http://mazzinisfatchildren.wordpress.com/2013/05/13/she-was-like-a-black-bet-lynch/).

    People have often asked me why I don’t go down the medication route to stop me possibly hurting myself but I wouldn’t want to become reliant on it, that scares me even more than the terrors in some respects.

    • I found that the melatonin helps and is not a medication, just a natural supplement so there is no dependency.

      I read your post, I can totally relate.

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