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Autism and “cycles”

Hey people with autism or parents of children with autism, can you answer me a question?  Do you or your child go through “cycles”? I’ll explain.

Casey is in one of his “cycles” right now. He’s super hard. He breaks down easy. He screams and cries for HOURS. It’s TOUGH to watch. He doesn’t sleep well, even with the medicine he’s on. He gets super fixated on things- way more than he usually is, which is already way beyond “obsessions.”  We can’t go anywhere and it’s tough to allow Carter’s or Casey’s friends over because I’m afraid they’re going to get caught in the cross-hairs. He’s violent, but fortunately that’s tempered because of the risperdal.

I’m SO tired right now. Casey’s been getting up before the sun, usually about 4am, every day for the last week or so. At home, we walk on eggshells because he’s so fragile. Lately it’s been worse, too, because Abby is LOUD. She’s found her voice and that sets him off, too.

I’m lost again. I don’t know what to do for him. We’re used to these cycles, but this one is worse because I can see how badly it’s affecting HIM. Usually, he’d just scream and kick and then be done with it. But now he feels bad about how he’s acting. He feels bad about everything. It looks A LOT like depression, but what do I do with that?!

Grumble grumble… time to make another call to the autism center. Any other ideas you guys might have would help SO MUCH.

47 thoughts on “Autism and “cycles”

  1. Ohhh Lexi, I know this all too well. We are in the throws of this right now. What I do is try and limit his activities, I take things off our schedule and let him calm down with his i-touch and whatever will make him happy. Alex has hard time with the girls and their noise—-I have him wear his headsets and his room is a quite zone. I also do this thing where I try to articulate how I think he feels—I'll tell him I know how he's had a hard day, recess is too loud and confusing, how sometimes all the sunshine makes my eyes hurt. All things I know he's feeling but can't get out of his mouth/brain. It seem to help him understand he's not along. Hang in there hon, hang in there.

  2. I wish i had even the tiniest words of wisdom. I'm sorry. And i wish I could take you away from it all even for an hour. but this week is too insane in my world too. 😦

  3. Thank you, Lizbeth. It's a good idea. Maybe I'll just let him take the ipad in his room and live in there with his headphones on. We take his headphones EVERYWHERE. I didn't think about it at home! This is why ask! Such common sense things, but when I'm in the mix of it and am just trying to calm him down, I forget. Tools. I do have tools!You're a tool!ahahahahaha… I mean that in the best possible way ever. Also, I do need to be more empathetic with him. I'm going to use the hell out of that one tonight. Thank you for replying. For being there for me. It's too hard some days.

  4. I really don't have any advice, but I wanted to say that we definitely go through these cycles. Our Autistic son is only 4.5 right now, and I know it's going to get harder when he gets older. The only things that work for us is taking away the stimulus that sets him off. Sometimes that means separating him from his baby sister (or he'll remove himself if she gets too loud) or taking away video games for a while. We are in a good place right now, but recently it seems like every 5 minutes he was screaming and out of control, waking up very early and not going back to sleep, not wanting anyone to talk around him… just not fun at all. HUGS (I'm also a really horrible mother and have figured out that, if I keep his favorite candy (chocolate) in the house, I can usually bribe him. It's pretty awesome.)

  5. So sorry it's rough right now. We've definitely had cycles too, and for a while I was scared to death we were looking at bipolar disorder on top of everything else. It seems that every few weeks his sleep cycle goes off-kilter, which affects the hyperactivity and focus, and creates problems at school, which carryover to home. We used to deal with aggression until we started a new med last year. I wish I knew what to attribute the cycles to, or if it's purely biological.We definitely limit activities during those times, and my husband and I tag team at home. When one is about to lose their mind from the frustration, the other steps in.I hope it evens out for you soon.

  6. I have been there many times with my son. For us there is always a reason, it may take me a while to figure it out or it may be something happening at school I can't change quickly but there is a reason. As you mention above, you have tools, remember, behavior is communication, ultimately he is trying to tell you something. In the meantime we use the model with my son that he is like a cup that fills up throughout the day. So it may we just a small drop that we see 'set him off' and it seems strange but we have to remember all the stuff he has gone through throughout the day has built up and this is just the thing that set him off. To counter that we set up releases through out the day. We assume the tension is building even if we don't see it yet. So whatever helps shut his brain off for a bit and gives him a sensory rest. For my son it's Ipad or watching a cartoon. I'm sure you know what these things are for Casey, I'm just saying remember to do them before he gets to meltdown if you know he is in a tough place lately. Then don't forget to ask for help where you can. We don't really have anyone who can help us with our son when he is one of these places, but we do have lots of friends who will take our NT son out and let him get a break, which in turn helps me feel less guilty about him not getting his needs met.Anyway, I hope some of that is useful, if not please ignore. When I have been in this place half the battle for me is not letting myself get pulled into a dark place of thinking this will never end so keep reaching out, keep asking for what you need, and keep talking through the feelings. There are a whole lot of us out here who have been there too.

  7. OH YES!! Both me and my son have these 'cycles'. My son (3 years old) is right in the middle of one too. I'm alone with him on weekdays so I have to let him calm down as much as I can because I can't really handle these 'moods' for too long. I let him watch tv and I let him take a bath more often than we usually do. These are activities that really calm him down. Besides that there isn't really anything we can do except be VERY clear about the schedule and what is/isn't allowed and STAY CALM YOURSELF (bloody hard!!!). Unfortunately I'm right back into meltdown mode myself right now because of this… Thank God my husband is at home tomorrow! Good luck!

  8. Yes!! My 7 ear old has autism and he cycles. I used to panic every single time I figured I've failed and I would start searching for a new therapy or the 'thing' that will help him out of it. I have noticed a pattern though. Either he is physically growing and this throws off all of his extra-sensory systems like vestibular, proprioceptive etc. or He is getting ready to develop a new skill. Whether it is just better sentences/conversational skills or he just started being ok with wearing underwear after one of these spells. Sometimes I figure its just to keep me on my toes. 🙂

  9. My son has that pattern too. I know now that it is something he has to go through when learning a new skill. I think this time it is the potty training we started 2 weeks ago. He said himself that he wanted to use the potty but not now when he is in overload mode all the time…

  10. You are not alone. Mine are bi-polar and one has Aspergers. They all cycle. Ours like handheld games and we can isolate them with that. It helps their brains refocus. Also for the bigger boy he really likes the punching bag. It is a safe way for him to vent. We also have a ten foot 'no contact' policy which is strictly enforced. Good Luck.

  11. Stress, illness and growth spurts are the cycle triggers for my little guy. Before when he was younger it was just the emotional rollercoaster ride, but now that his understanding of emotions and feelings is more sophisticated, he deals with low self-esteem during the low times and some scary thoughts. We get through it, although I honestly don't know how sometimes!

  12. That's what I've been trying to do, too. We hung up butterflies in his room and made an entire space set. Bribes work…for a minute.I had NOT thought about taking the video games away. Maybe they are too much stimulation for him?

  13. Do you think it's bipolar? Melissa M. said that same thing to me today. I think my husband might have mentioned it, too. What made you think it was or wasn't? Did you see a psychologist? I don't know what we would have done without the meds. It would not be safe here for the other kids, and probably himself, that's for sure. My husband is good to come home and take over. He doesn't get home until 7 or so, so that SUCKS, but at least when he does get home I can be DONE.

  14. Thank you, it is SO helpful. I try to stay on top of the meltdowns, but they have come so much without warning lately. He just seems to be all together SO sad. I need to find other things for his brothers. That's for sure. It's also SO tough because then he sees them doing sports and things he really doesn't want to do, but he still asks why he's not doing them. It truly is half the battle to not get pulled into that dark place. That's where I'm at right now. Kicking and screaming and blogging for help before it takes me too far down, too. Thank you for letting me do this. For letting me talk it out and for offering help. The support helps SO much. I'm so glad I'm not alone in this. I just sort of wish so many other people didn't have to go through it, too.

  15. That's tough, too! But losing it doesn't help anything. I've learned that from experience too many times. Is there anything YOU do FOR YOURSELF when you're in these cycles?

  16. I had honestly NEVER thought of that! Not ever! Now I have to see if there's something along those lines that might be setting him off. We just can't ever tell when these cycles are going to start, how long their going to last or how to get them to go away. He's a BIG kid. He's grown a lot in the last year. It may have something to do with that.

  17. Hmm. My girls go through cycles as well. Aparently we aren't alone which is wonderful and awful at the same time. Since mine are younger I don't know from first hand experience BUT as someone who does suffer from depression you mommy instincts probably aren't off. If he's feeling bad about it..maybe it's time to have him start talking about it to someone professional. Someone who isn't emotionally invested. Gosh I wish I had more to offer than that. All I know is when I am going through stuff like that..when I do things I don't mean to I need to talk. Otherwise it can turn inwards really fast.

  18. Does the one that have Aspergers have bi-polar as well? If so, how did you know the difference between the bi-polar and the aspergers? How were you able to figure out there were two separate things going on? If they don't have both, how did you find out your child had bi-polar. What were the symptoms, if you don't mind me asking? Could this be bi-polar as well?

  19. So he has the verbal ability to tell you his self esteem is low, or have you figured it out other ways? What can you do for that?! I think that's every parent's huge heartache. Casey will say things like, "everyone will hate me" if he does one thing or another. But I thought that was him overgeneralizing. Maybe that's an issue as well. Is it tied to depression, you think? Casey seems SO depressed right now. But that may be me projecting on him.

  20. So do you just take them into the doctor to be checked when they are like this? I hadn't thought about illness because he hasn't acted sick. But that could be it. I just don't know.

  21. Thank you for being SO honest. I have depression, too, so I feel like I can see it in him. But I worry that it's too early to diagnose or treat depression. He's only eight. But I can't stand seeing him feel this way (if it is the way he's feeling…) because I know that feeling all too well myself.

  22. Well frankly I was grasping at explanations when I thought that. He doesn't have periods of what I'd call depression. He is mostly hyper and manic-y, but happy. When we go through cycles, he is still mostly happy, just more…edgy, anxious, defiant. More tired, for sure, and trouble going to sleep. So all I could think was bipolar.But we talked to his psychiatrist about it, and he said he was way too young to consider that diagnosis. So for now, we are treating as though it's part of the spectrum stuff.I saw a segment on 20-20 or 48 Hours, one of those, about a family with a child who's bipolar. Watching it, it was terribly obvious there was an issue. It was really out-of-control. I felt so bad for the family, but it was helpful for me because I knew we weren't dealing with something like that.I suppose it's worth exploring if you are concerned about that, and definitely if you are seeing marked highs and lows. But from what I read and hear, it seems like a lot of kids on the spectrum have these weird cycles.Don't freak out though, and convince yourself that's what it is. Just explore it. And hang in there.

  23. That's what we're here for. Sometimes when you're so close to it the answer is beyond reach. Well, at least it is for me. 🙂 Hugs, sweetie, hugs. I know I'm going to do this some time—when I type in hugs, I hit the "J" and I know I'm going to tell someone jugs and not hugs. I know you'll appreciate my humor. Jugs landy, jugs…see, just like that.

  24. Depression hurts and I think it goes both ways you know…if you're sick or in pain, it's easy to get depressed and if you're depressed it's easy to be in pain. Ewan can tell us now how he feels but he used to use a communication device. He deals with chronic pain (a different health issue) and so from a very early age we focused on getting him to distinguish between physical pain and emotional pain. Maybe that's why he's so expressive when he is depressed–he generally says things like I hate myself, I'm so stupid, I wish I were dead…we always provide the antidote to statements like that but I cannot keep him from thinking them. Positive self-esteem is something we continually work on. Before he could speak, Ewan would do self-injury when things like this came up, and sometimes, even though he can speak quite well, he will sometimes still resort to self-injury–whether the cause is stress or illness.

  25. I recently had a discussion with one of our therapists about video games that made SO MUCH SENSE to me. They are basically the perfect storm for kids with Autism and ADHD. She said that the video games set up certain expectations for the kids — they know if they do "X", then "Y" will happen. If they click "there", then "Z" will happen. It's all very predictable and able to be controlled to a certain degree. It's also extremely fast moving and very stimulating so it causes the kids to expect that type of stimulation and excitement in normal activities which obviously is not how life works. We've even gone so far as to completely remove game systems for a few WEEKS. It truly does help with both our Autistic son and our oldest who has ADHD/Asperger's. I've been tempted, at times, to take it all away permanently, but it's so much a part of the kids social lives now that I'm afraid to make them even more "weird" by not allowing video games at all.

  26. I would take him in and ask for a strep test. My son tests positive for strep without any of the usual symptoms other than being really obsessive. If the doc gives you a hard time, just grovel. It works for me.

  27. You say he's on Risperidone but don't say much about anything else. Perhaps its time to schedule an appointment with his psychiatrist to see if adding another medication (Prozac) or changing the anti-psychotic might help with the cycling. My son used Depakote, which worked only for a little while. (Risperidone was a nightmare.) Now he's on Abilify and Prozac and we really see a positive difference in his mood. The sleep thing is a bear because it just feeds on itself.My friend swears by arbaclofen for her son. What does the behaviorist say?

  28. I'm not sure where you are, but Spring is always tough for us because of allergies. That and the whole hour change thing a little over a month ago set us off on a before 5am waking frenzy that lasted for two weeks. I have two boys with autism, ages 9 and 7. We haven't gone through the cycles that you describe in four years (when I started really trying biomedical treatments–supplements, vitamins, stuff like that). But we used to see them every December and March, like clockwork. With my guys, it always comes down to food and sleep. What are they eating (or not eating) and how much sleep aren't they getting. Susan Senator wrote about them with her son, Nat, in her book Making Piece With Autism. When they're here, just hang on for dear life. But they do always pass. As least they did for her, and I know they do for us. Good Luck!!! {{{{{HUGS}}}}}

  29. I called the psychiatrist today. He's on resperidone and concerta (ADHD) and trazadone to sleep. It might be a good idea to check out antidepressants or mood stabilizers. I'm just SO worried about adding something ELSE. We're going through the autism clinic at Children's National, so I imagine they know what they are doing with all of this. I've never heard of arbaclofen before. We don't have a behaviorist.

  30. Who are you? Do you have a blog? I'd love to talk to you more. Please find me on Facebook if you read this again. Did the biomedical treatments work for you? I have heard mixed reviews. It may be allergies. Totally. It's that time. He's not snotty or anything though. I wish they'd just figure out this autism thing already!

  31. I was going to suggest allergies too. I am an OT and I have several clients who are going through a spring cycle right now. With a quick google search, I saw that allergies could trigger this for some people, and often without major symptoms. I also second the wacky vestibular changes thing. I had one client who I could always tell when he had fluid in his ears because his behavior was way off. Ear fluid could come with allergies…Thanks for starting this conversation! I have been checking back all day to see new comments – very helpful!

  32. My Nephew goes through bouts of depression too Lexi, now that he is older he can actually tell us when he is feeling low…Back when he was younger he would just act out. He is on dexedrine right now for ADHD, and at night he takes melatonin to help him sleep or else his body just doesn't shut down. What we found really, really helped with his mood swings and depression was simply a fish oil tablet…Just plain old omega 3. It works wonders for him. I don't know if you have tried that already, but it may be worth a shot?

  33. I am so glad to hear all of these other parents on here describing the cycles they go through with their kids on the spectrum. I am always SO worried that this is only something going on with my little one. Not that I'm happy everyone else is suffering, but it is good to know that it may be part of the process. My daughter is only two and a half, but I'm already suspecting she may need some medication when she is older. She is so violent when she goes through these cycles that I feel completely lost, alone, terrified, frustrated, you name it. The poor thing just rips her hair out in handfulls and punches and kicks everything in site. Its so terrible to have to deal with. The strange thing about it is that she is considered high functioning and you can tell she understands what she is doing is wrong when she acts like that, but its seems like she can't even help it. She also gets extremely touchy during these cycles. Suddenly she WILL NOT wear princess shoes, and the fact that it was even suggested is utterly disgraceful and unacceptable to her, despite the fact that they were her favorite thing in the entire world the day before. *sigh* I just have to remind myself that she always comes through it and has a good couple of weeks in between. For some reason I always find myself feeling like "this is it, this time she's going to stay this way for good" then she wakes up the next day, bright eyed and bushy tailed, ready to take on the world. Who knows.

  34. I try to relax as much as I can. So when my son is with me I leave the housework and do only the things that are really necessary. When my husband comes home I claim a room to be alone in and leave him to care for our son. If it comes down to a meltdown I am forced to call my parents to take my son for a day or two so I can calm down… I hate it when I have to ask for help…I hope your day will be better today for you and your son!

  35. we TOTALLY have cycles. my boy is 5, and we finally figured out that they are usually in relation to either allergy problems (spring) or growth spurts–either physically, emotionally or mentally. WHenever he is "figuring something out"–new language, new skill, new feelings, we have to ride the roller coaster because he will regress in other areas. So while the bad times are no fun, we usually see it as the growing pains for something awesome. Hang in there, mama!

  36. I have four who are bi-polar but I didn't immediately assume that they all were, because they all looked different. Yes, K has Aspergers and bi-polar as well. When K was born no one was talking about Autism yet. It was not the buzzword that it is today. In fact his pediatrician looked at him happily spinning in circles and communing with the light fixture…and said "Since he has language I think this is Aspergers." That was it. No advice on who to call or where to go for help. Just…nothing. The fits were awful and they didn't 'fit' the Aspergers diagnosis according to his child psychologist. Also he had hallucinations and horrible mood swings. So finally he was diagnosed BP as well. His sister was off the charts intelligent, but violent especially as puberty approached. She was diagnosed with BP at eleven. The little guys cycled, one extremely low, one extremely high. They were diagnosed in first grade. The symptoms were different for each child. My daughter was always moody. Very active and had behaviors which were out of sync for her age. She would go from very hyper one day to very sad the next(or even the same day). She threatened to hurt herself at a very young age. My middle was hands down the hardest child I have ever parented. For years I slept in front of the door to keep him in. Very active, physically violent one minute to super sweet the next. He was the kid who would run up to another kid and push him and then say; "Wanna play?" he simply had no clue about correct social interaction. One of my saddest memories of him is him standing at the top of the breezeway watching the other kids play. He so wanted to join in, he just didn't know how. The twins started out fine, but were diagnosed with ADD by 1st grade. I would say the mood swings started at about six years old. They were pretty adept socially, but they absolutely could not sit still. When they started cycling it was crazy town at our house. All of them have had extensive psycho-educational testing. Though they all have 'symptoms' of the spectrum only one is severe enough to actually qualify for that diagnosis. One thing people don't realize is that a dx is not set in stone. Sometimes it morphs with the child. It doesn't mean the child didn't qualify for that dx, at the time it was given. I really think this is where all of the 'you can cure your kids autism' comes in. However as my middle has grown I've seen some 'adaptability' skills that I've never seen before. He still carries all of the dx but he is definitely blending in more, fitting in more than he ever has before. Sorry so long. I hope this answers your questions.

  37. I don't mean to frighten and I am not a parent of autism, but I used to do respite care for a family friend who's son was autistic (among other diagnoses). He had/has cycles. They are usually in November and end up with him being hospitalized and restrained in the hospital. I worked with starting at age 6 and as far as I have been informed, these cycles still continue. There isn't much his mom can do for him besides know the signs of the cycle and be ready for them. 😦 Comes with territory I guess. I can't imaging how difficult and/or tiring that can get, but I pray for your strength (and lots of energy!)

  38. Our son has aspergers, and is 10 yes old. Tantrums are better now. He is on trilyptal for the neurological issues for several years. Added resiradal last year and have increased recently( growth spurt). Depressed so added zoloft 3 weeks ago. No tantrums for a month. Also, these kids do not produce much melatonin. The neurologist started him on that years ago, and has slept well since. We did cut back melatonin amount when added respiradal. Takes respirdal, zoloft, half trileptal , and half of one mg ofelatonin at night. One trileptal in morning. Male sure I give night meds around 7:00, so there is plenty of time to sleep off. any tored side effects. Again, very calm as result. This time of year seems to be really hard on our son, for some strange reason…cycling. Therapy for feeling different, isolated, or not wanting to feel the way he does. Our son has issues with the sensory aspect, too. Noise. School is driving him crazy bc of it. Are looking at schools specifically for his needs for the fall. I hope some of this info is helpful. I feel like I know you bc we parents of these precious, brave, and amazing kids all feel the same hurts, hopes, and struggles with ourselves, families, schools, and society. You are in my prayers.Rember that it is crucial to find the perfect combo of meds, therapy, and school … All working together as a te for your child.

  39. We're working on some brain-based therapies with a chiropractic neurologist. He explained to me that sometimes an "electronics-free" diet can help as electronics stimulate the left brain and kids on the spectrum often have weaker right-hemisphere brains as it is (contributing to the neurologic dysfunction according to the experts). Anyhow – when my 5 y/o son with Aspergers spends too much time on electronics (such as during a break from school) his behavior usually takes a serious nose-dive. We eliminate everything except maybe a half-hour of television per day and within a couple of days, he shows marked improvement again. It's hard to try to take it away completely because it is the perfect activity for kids like my son and there are some very educational options out there too… but sometimes it seems as though it's not worth the hassle in trying to manage the limitations which must be set in place to control it all!

  40. Yep. And Casey sounds exactly like my 5-year-old right now. I know a lot of it is communication frustration but right now it's more than that. And we had him on Focalin for a couple weeks and it made him SUPER irritable and even more prone to violent tantrums. (Although, Focalin has done wonders for my daughter with DS). We stopped giving it to him, but he's still wearing his wolf suit. Sigh.

  41. I do the same. I often have strep without symptoms (ended up in the hospital for a week because of that, but that's another story) and my kids don't have the "typical" strep symptoms either. Of course, my son can't tell me if his throat or tummy hurts. So, if he's out of sorts for an extended period and I can't figure anything else out, off we go to the pedi to check for strep and ear infections. The last time I did this, it was his asthma, but I couldn't *hear* the wheezing (without a stethoscope) and he couldn't tell me his chest felt tight. This non-verbal thing sucks.

  42. Thank you for this thread. My daughter, 9, is starting to go through a downwards cycle and have found the comments here to be thought provoking. I have wondered about allergies, viral outbreaks, atmospheric pressure changes, lack of sunlight/vitamin D because of our northern location, growth spurts and how it can affect the tightness of the membrane surrounding the brain. Haven’t figured it out yet for my daughter and it is hard to watch her go through it again, but it makes me feel better to realize we are not alone. Thank you!

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