Autism and sleeping
Actually this is also an issue shared by most parents/caregivers of children when they are first born. One can tell parents of new born babies as they walk down the road by the zombie-like expression on their faces and occasional habit of going to sleep mid-conversation.
Problem is that for parents of children with autism this can go on for a long, long time after other children are snuggled up in bed.
In AutismTalk (https://www.facebook.com/AutismTalk), our Facebook discussion page, people often write in asking questions about how best to get their children with autism a good night‘s sleep.
Now, I should mention that our son John has over the years developed reasonably regular sleeping habits. Although he is a nightmare when jetlagged. But then so am I……………..
These days he sleeps from around 10 o’clock in the evening to around 7 o’clock the next morning. So we know we are doing pretty well considering. That being said he likes to have a snack before going to sleep (in his case either an apple or a pear) and needs to be cuddled as he drops off. Oh, and he will often re-appear in the middle of the night to check we are okay.
I can generally tell when this has happened by the kick which emanates from the middle of the bed where he has placed himself. He has a bath generally after his supper a few hours earlier.
But I know that even though he goes to sleep much later than we would like we are much better off than many parents. Indeed I’ve heard of some children and adults who hardly sleep. Sometimes just a few minutes at a time.
The aim of this blog post is to give you an opportunity to share your autism and sleeping story. In particular what methods you have employed to improve the situation. You might like to consider some of the following questions when giving your comments and sharing your experience:-
1) Can you describe your or your loved one’s sleep patterns and how they have developed/changed over the years? For better or worse?
2) If you or your child has poor sleeping patterns what effect does this have on the people around your?
3) What techniques have you used to develope a more “normal” sleeping pattern?
4) How successful have they been?
Please feel free to share anything with our readers you think will be of value in the comments section below.
Finally, is it possible for it NOT to be a problem that somebody only sleeps for a shorter time than the eight hour norm? I know a number of people who really only sleep for a few hours a day and do not suffer from sleep deprivation. Is this ever the case with a person with autism?
Thanks very much in advance.
| Melatonin has been a life saver for my two boys with autism. If all else fails I give them half of a dissolving tablet and the drift off 20-30 minutes later. But if you give it every night they can develop a resistance to it and you have to keep upping it. That is why we use it as a last resort. Try a steady nightly schedule first. Hope this helps. | |
| LauraAndruk | Elizabeth Howell A developmental pediatrician told me that autistic children do not produce enough melatonin in order to fall asleep, this is why he suggests it. |
| clairsims | I have two one grandson with downs syndrome and autism, sleep has always been a problem, still is he is now 28yrs, My great grandson is 4yrs old just been diagnosed with autism, just read about melatonin and calms forte, going to call my granddaughter and have her check this out. Iwill also look in to it. |
| AimeeTrevelyan | Our lb used to have to be cuddled to sleep evey night, would take hours laying in bed, and eventually he would drop off usually before midnight, but then would wake around 2 and stay awake for about 3 hours running around smiling. When he was a baby we couldn’t put him in his cot and do the whole cry to sleep thing he would just make himself sick. He was put on fenerghen and it made things worse. Then when he was diagnosed high functioning asd at the age of 3 they prescribed 3ml of melatonin nightly and now majority of the time he falls asleep by 9 and wakes at 7. So much better 🙂 |
| Rebecca318 | Elizabeth Howell Yea – I should have added we only do that during school days or on days when he cannot sleep in the next day. While it can cause the body to stop producing on its own – he already does not produce enough to slow his brain down so the good far out weighs the possible bad. He needs sleep and I would rather give him something his body would otherwise produce instead of a narcotic or other substance. |
| Elizabeth Howell | There is a problem with giving your child melatonin. Our bodies naturally produce melatonin and when you feed it extra doses your body then stops producing it’s own melatonin which in turn leaves you dependent on the pill. It’s a nice temporary fix but not to give to your child on a nightly basis. |
| Rebecca318 | Melatonin and Calms Forte has worked wonders for my 8 year old son. The melatonin helps slow his brain down to fall asleep and the Calms Forte helps him stay asleep. He went from waking 3-4 times a night to now 1 or 2 and sometimes sleeping all night! Calms Forte is all natural. I had never heard of it but his new child development specialist recommended it and said she had great results for the sleeping with her spectrum kids as well as ADHD – the Calms Forte has also helped him during the day when he gets really wound up or overwhelmed. I give him 1/2 of one for the day. Worth checking out! |
| nicolebicebey | My son was diagnosed PDD/NOS at age 3. He is now 19. He never slept well after the age of 2, he was a perfect baby before that sleeping more than most. He wanted to stay up all hours and then only sleep for about 4hours at most when he did fall asleep. My husband was in the military and we were so tired I remember being so frustrated at my child for not going to sleep so I just laid in his bed with him and made him stay with me and held him tight so he could not leave the bed. He got upset and cried until he cried himself to sleep. That started to be a pattern for about a week until he started to go to sleep when I put him to bed but he never slept through the night. I finally stopped fighting it and found things for him to do during the night which were quiet. Oh we tried GF/Casein free which was good for skin problems but not much else, he was also non verbal. He is now verbal with a slight delay in speech and is “recovered” from the autism. Not really but that’s what I was told by the last person who did his testing. At age 5 when he all of the sudden decided he wanted to make anime cartoons and started drawing I found my quiet task to get him through the night and keep him occupied while we slept. I slept in his room while he drew and drew and drew. He draws wonderfully (thanks to that obsessive quality) and wants to become a special effects artist. He is not a natural artist. There are people who can just draw anything, his comes from working hard at it and he is never without his sketch book. I just took a weakness or problem-his lack of sleep- and turned it into a major strength. I don’t think his sleep pattern will ever be “normal” but he turned into an artist in a very employable field and can now support himself. That is all I ever wanted for him is to have a life where he can be productive and possibly have a family of his own and be happy. I also homeschooled so that helped with our crazy hours. |
| LisabethHutchison | |
| jlrowan1973 | My son, now almost 14, had a really rocky start with his sleep patterns. I can’t remember exactly when it started, but probably around age 2. We would put him to bed…then spend the next 3 hours taking turns putting him back into bed when he came out. It was exhausting for all of us. We were tired at work the next day and short with the kids, and Luke was trying to sleep in the daytime. It didn’t matter what we did to keep him awake, he still was up at night for hours. To be honest, the sleeping didn’t resolve until we put him on a gluten free/casein free diet. I eliminated dairy first, which I do feel is a bigger problem for him, and the improvement was almost immediate. Taking out gluten helped too, with the sleeping but with other behaviors as well. Since then, Luke has not had any sleeping problems. He goes to bed exactly on time and has an uncanny internal clock that wakes him up exactly when he needs to to get ready for school.
These days, we are more lax on the GFCF diet and give enzymes with dairy/gluten, but in the beginning, I think the strict diet was crucial for helping his sleep habits along with many other behaviors. Dairy contributes to his stimming and general awareness of everything around him. When we first eliminated dairy, I saw a cloud lift from his eyes almost immediately. Gluten contributes to his emotional well-being. If he gets a lot of gluten, even now, I notice more anxiety and a shorter temper. I know the diet is still controversial, but that is how we solved a lot of problems. Did it “cure” my son? No, not by a long shot. However, it was and still is a huge component of his success. The diet was something I could control and I was adamant about not using medication with him and it worked out for us. |
If he is jumping all day have him tested for Sensory Processing Disorder it may have some bearing on his sleeping problems
Hi I’m 30 years old and was diagnosed Aspergers at 25. I have had sleeping problems for as long as I can remember like going to bed and not falling asleep for 2-4 hours (my record is 10 hours) and then sleeping 10-12 hours. Also my sleeping pattern seems to be determined to be nocturnal no matter how hard I try to set my patterns so I am awake and active during the day. The most I have managed in the last 3 years is 3 weeks active during the day but mostly I only achieve 2-3 days in a row active if I’m lucky. I am trying my best to avoid sleeping drugs as I HATE taking pills but I’m at my wits end and I feel that is the only option I have left. Does anyone else experience something similar?? If so what do you do to deal with it?? I’m hoping that someone out there has tried something I haven’t that will be the key to solving my problem.
LisabethHutchison My son is 2.5 and was diagnosed with delays, but only a few points from Autistic so he never officially got that diagnosis. Whenever I come across anyone who says their child is nonverbal I like to point them in a great direction. I started this about two weeks ago, as well as supplements, SCD diet. The program I am referring to is GemIIni.org. They are on Facebook too. My son has had lots of babble type sounds, but no words. After two weeks on all of the above he is now rubbing his teeth and saying tee and for cat he says ca. It is small steps, but in my heart it is a giant leap. If you check the Gemiini page and you decide to use it I just hope you will continue to spread the word like I am. I live in Alaska and not too many things available as they are in the lower forty-eight. So the more people know the more power we all have. Good luck!! Oh and PS if you join the facebook page there is a private discussion board linked to there for all the parents, which is very helpful.
Hi, My son is severely autistic and was diagnosed when he was 18 months old. He has massive sleeping issues since then. I try to keep the routine before bed ( which might not be possible all the time). I give him a bath after dinner. He is almost thirteen now. doesnt matter what time he sleeps ( even 10 or 11 pm) he wakes up at 2/3 am at night. He is on quite high dose medication ( Serequel 100 mg, Clonodin tab and also Prolongled release Melatonin). He only sleeps properly for 1/2 nights a week. He should be very tired whole day as he is in the trampoline jumping all the time. But still he is like that. He seems to get scared and wakes up in the middle of the night. Does anyone have any idea what to do?
As long as my grandson doesn’t nap and he gets enough stimulation, such as an hour at the park, he usually sleeps from 8:30 to about 7. But we have always been consistent, if something happens and he’s up past time it takes a week of going to bed at 3 before he’s back on schedule..a bath and snack before bed helps because he knows after snack is bed..also TV off and sometimes massage relaxes.we usually start the routine about 7 it gives him time to unwind.and get the wiggles out after he’s in bed. Also if lay with him he tends to fall asleep faster.
my daughter, when she was 3-5 yrs, used to stay awake until 3 am. i was given melatonin (it’s a tablet but not medication–just natural product) prescription and was told how to administer it.
it is given an hour before she’s scheduled to sleep. it has to be at night or in a really dark room without noise. and she has to lie down within 30 minutes for this to take effect. then we have to wake her up once the sun is up or approximately 8-9 hours after, so that she doesn’t over-sleep and start the problem again.
but i realised that if i woke her up early in the morning, regardless of what time she went to sleep, it fixes the problem. so i held back on the melatonin as long as i could, only giving it at around 3am if she’s really not pliant. by this time i give only half the 3mg tablet so she won’t oversleep or wake up groggy.
i only administer the melatonin during school nights and only when i am desperate (probably once a month). in the holidays or term break, i let her sleep late, and let her wake up late–so i can do the same 🙂
My father read a story every night. He also sat at the bottom of the bed until I was asleep. If ever I got up in the night he always helped me back to bed.
I am raising my autistic adopted brother. I don’t know why I ay adopted–as he is my brother in all meanings of the word. I found when he would get loud and scream at bedtime he wanted some one-on-one time with me. So I let him come and sit with me on the couch and talk if he wanted to or just tell him I love him and give him a hug. We would sit for approx. half an hour and then I would say are you ready for sleep? He would just get up and calmly go into his room and go to sleep. Sometimes just something simple like this might work. Good Luck!
Melatonin has been a life saver for my two boys with autism. If all else fails I give them half of a dissolving tablet and the drift off 20-30 minutes later. But if you give it every night they can develop a resistance to it and you have to keep upping it. That is why we use it as a last resort. Try a steady nightly schedule first. Hope this helps.
Elizabeth Howell A developmental pediatrician told me that autistic children do not produce enough melatonin in order to fall asleep, this is why he suggests it.
I have two one grandson with downs syndrome and autism, sleep has always been a problem, still is he is now 28yrs, My great grandson is 4yrs old just been diagnosed with autism, just read about melatonin and calms forte, going to call my granddaughter and have her check this out. Iwill also look in to it.
Our lb used to have to be cuddled to sleep evey night, would take hours laying in bed, and eventually he would drop off usually before midnight, but then would wake around 2 and stay awake for about 3 hours running around smiling. When he was a baby we couldn’t put him in his cot and do the whole cry to sleep thing he would just make himself sick. He was put on fenerghen and it made things worse. Then when he was diagnosed high functioning asd at the age of 3 they prescribed 3ml of melatonin nightly and now majority of the time he falls asleep by 9 and wakes at 7. So much better 🙂
Elizabeth Howell Yea – I should have added we only do that during school days or on days when he cannot sleep in the next day. While it can cause the body to stop producing on its own – he already does not produce enough to slow his brain down so the good far out weighs the possible bad. He needs sleep and I would rather give him something his body would otherwise produce instead of a narcotic or other substance.
There is a problem with giving your child melatonin. Our bodies naturally produce melatonin and when you feed it extra doses your body then stops producing it’s own melatonin which in turn leaves you dependent on the pill. It’s a nice temporary fix but not to give to your child on a nightly basis.
Melatonin and Calms Forte has worked wonders for my 8 year old son. The melatonin helps slow his brain down to fall asleep and the Calms Forte helps him stay asleep. He went from waking 3-4 times a night to now 1 or 2 and sometimes sleeping all night! Calms Forte is all natural. I had never heard of it but his new child development specialist recommended it and said she had great results for the sleeping with her spectrum kids as well as ADHD – the Calms Forte has also helped him during the day when he gets really wound up or overwhelmed. I give him 1/2 of one for the day. Worth checking out!
My son was diagnosed PDD/NOS at age 3. He is now 19. He never slept well after the age of 2, he was a perfect baby before that sleeping more than most. He wanted to stay up all hours and then only sleep for about 4hours at most when he did fall asleep. My husband was in the military and we were so tired I remember being so frustrated at my child for not going to sleep so I just laid in his bed with him and made him stay with me and held him tight so he could not leave the bed. He got upset and cried until he cried himself to sleep. That started to be a pattern for about a week until he started to go to sleep when I put him to bed but he never slept through the night. I finally stopped fighting it and found things for him to do during the night which were quiet. Oh we tried GF/Casein free which was good for skin problems but not much else, he was also non verbal. He is now verbal with a slight delay in speech and is “recovered” from the autism. Not really but that’s what I was told by the last person who did his testing. At age 5 when he all of the sudden decided he wanted to make anime cartoons and started drawing I found my quiet task to get him through the night and keep him occupied while we slept. I slept in his room while he drew and drew and drew. He draws wonderfully (thanks to that obsessive quality) and wants to become a special effects artist. He is not a natural artist. There are people who can just draw anything, his comes from working hard at it and he is never without his sketch book. I just took a weakness or problem-his lack of sleep- and turned it into a major strength. I don’t think his sleep pattern will ever be “normal” but he turned into an artist in a very employable field and can now support himself. That is all I ever wanted for him is to have a life where he can be productive and possibly have a family of his own and be happy. I also homeschooled so that helped with our crazy hours.
My six year old son was diagnosed as autistic at age four, but long before then we knew he had problems with sleep. He would wake in the night and keep himself awake by giggling, squirming around or playing. It seems he has always been this way, it is exhausting and frustrating not to be able to help him. Everyone in the house is exhausted and I don’t know what to do. I have tried keeping his schedule the same, giving him his bath after supper every night. He has been on melatonin for over a year and that helps him to go to sleep but doesn’t seem to help him to stay asleep. The doctor had me start him on 1 mg and then 2 mg when the 1 mg no longer worked. We are blessed as this only happens about 4 times a month however, he is still missing school because of it and is whiny and miserable the next day. Any help would be appreciated. BTW We haven’t tried any of the diets with our little guy and he is mostly nonverbal.
My son, now almost 14, had a really rocky start with his sleep patterns. I can’t remember exactly when it started, but probably around age 2. We would put him to bed…then spend the next 3 hours taking turns putting him back into bed when he came out. It was exhausting for all of us. We were tired at work the next day and short with the kids, and Luke was trying to sleep in the daytime. It didn’t matter what we did to keep him awake, he still was up at night for hours. To be honest, the sleeping didn’t resolve until we put him on a gluten free/casein free diet. I eliminated dairy first, which I do feel is a bigger problem for him, and the improvement was almost immediate. Taking out gluten helped too, with the sleeping but with other behaviors as well. Since then, Luke has not had any sleeping problems. He goes to bed exactly on time and has an uncanny internal clock that wakes him up exactly when he needs to to get ready for school.
These days, we are more lax on the GFCF diet and give enzymes with dairy/gluten, but in the beginning, I think the strict diet was crucial for helping his sleep habits along with many other behaviors. Dairy contributes to his stimming and general awareness of everything around him. When we first eliminated dairy, I saw a cloud lift from his eyes almost immediately. Gluten contributes to his emotional well-being. If he gets a lot of gluten, even now, I notice more anxiety and a shorter temper.
I know the diet is still controversial, but that is how we solved a lot of problems. Did it “cure” my son? No, not by a long shot. However, it was and still is a huge component of his success. The diet was something I could control and I was adamant about not using medication with him and it worked out for us.