Autism, sleep schedule and future college

[tj_610]

I thought this would be best place for this question, although DS doesn't have what most would consider "learning challenges".

18 yo DS homeschooled since 2013. 2E kid, highly gifted (IQ 150), autism mainly manifests as executive function issues (organization, time management, follow-through). ADHD mainly inattentive type though we are seeing more hyperactivity after 10 PM. Very little communication manifestations (though he can be hyper-literal). Manifestations didn't become noticeable until 10th grade, and have become more prevalent (whether due to worsening or due to life complexity, I don't know). On no medication. He's done extremely well academically and not too bad socially. He's been accepted to Georgia Tech early action (out of state); other decisions are pending. Earned his Eagle Scout last month (with no disability accommodations; he has never told his Troop or leaders about ASD). He doesn't like to share his diagnoses with others, and when it comes up, he's quick to point out that he's never received an "accommodation" for anything, including standardized and AP tests. This is true, though I counter that homeschooling is the ultimate "accommodation".

DW and I clash over how to best help him with his sleep schedule, and I'd like some advice. He says he has a hard time settling down. His "default" is to sleep from about 1 AM to 10 AM. I think that's a the right amount of sleep, and I think it's usually quality sleep. I have studied a lot of sleep science and recommendations for avoiding screens and stimulants, relaxing environment, etc. (I'm a physician; not a sleep expert, but able to read and understand it).

He really wants to go to college in the fall (math major), and we want to support him. He will do what he wants to do when he moves away. But how much should we do now to adjust his schedule? I'm only hoping for 11:30-8:30 sleep schedule. We've tried "carrots" and "sticks"; neither works for long. He insists that listening to classical music at bed time helps him relax, but then he hums Piano Guys songs all day long, so I don't know if he knows what "relax" means. We tried melatonin, but it made DS too groggy the next day. Alarm clocks don't work. He even used 15 alarms, one minute apart from each other. Didn't get him out of bed for good.

In the short term, the concern is that his pattern disrupts the family (us 3, and 15 y.o. DD homeschooling). He makes some noise after we all go to bed. We can't do anything together in the mornings. His meal times are totally out of line with ours (important family moments are missed). He makes us late to church Sunday at 9 AM. We've settled lately for just leaving without him (he actually is bothered by this, and likes going). In the long term, I'm concerned he will poorly self-regulate in college, and get worse. Forget 8 AM classes; he might miss 10 or 11 AM classes. His odd meal schedule has resulted in mild weight loss this year, and I'm concerned he won't be healthy.

I'd love to hear from anyone's experience, and what worked and didn't. I am leaning to using abrupt and forceful 8:30 wake-up measures until he gets tired enough to fall asleep earlier, even if it takes weeks. That is certainly what I'd do (and I wouldn't be posting here) if not for ASD/ADHD. Isn't that the heart of so much parenting of these teens? Is this autism, rebellious teenager, or both? Anyway, I don't think DW has the stomach for that. I've even told DS that going off to college is contingent on correcting this, with the alternative being a gap year to work on this (and other issues). I don't know what best works with ASD/ADHD, compared to neurotypicals.

Edited January 17, 2019 by tj_610
Inadvertently double-spaced paragraphs

[Lecka]

https://www.socialthinking.com/Articles?name=Preparing for the Transition to Adulthood Part 1 Article

I am posting this link, and there are links on the bottom about other transition-to-college articles.  

I think a good question to consider is, if homeschooling is the ultimate accommodation, then are there additional accommodations he is used to now, that he won't have when he goes to college?  That may not be on your radar?

Then, I don't know on this.  I think it seems a little arbitrary to change his sleep schedule now, when right now he isn't missing classes.  

If you want him to adjust his sleep schedule now, because of church and meals and special occasions ----- I think that is good enough reason, and you don't need to have college as a reason.  

I think that is reasonable.  

If your wife doesn't like "abrupt and forceful" wake-ups, then I don't think that is an option.  Then you risk too much that your wife will side with your son over you.  It is just not a good option anyway.  You two need to be on the same page.  You two need to find something you think can work that you can agree on.

I think it could be really good to look into a counselor.  I think that is the best way to find out about what works best with ASD/ADHD, and find out about options, and decide what you and your wife are on the same page about.  That is -- if you would both feel like listening to professional advice and think it would be a help to decision-making, or finding a way to compromise. 

There are books about transition-to-college for autism, that I don't know the names of off-hand, but I have seen them mentioned in the articles from Social Thinking.  Maybe there is just one book mentioned, I'm not sure.  There is definitely a book, though, and I think that might be helpful for you and your wife and son.   

[PeterPan]

1 hour ago, tj_610 said:

I am leaning to using abrupt and forceful 8:30 wake-up measures until he gets tired enough to fall asleep earlier, even if it takes weeks.

This is absurd since his issues are chemical in nature. You could run genetics and actually know WHY he doesn't fall asleep like more typical people and treat the deficit.

1 hour ago, tj_610 said:

We tried melatonin, but it made DS too groggy the next day.

The dose is usually too high and hangs in the system too long. The actual amount to tip his sleep cycle is super tiny, like 1/4-1/2 mg. But it's sold in 1-10mg. Ponder that. 

1 hour ago, tj_610 said:

He says he has a hard time settling down.

Sometimes stimulant meds help with this. If he qualifies under ADHD, you might consider the meds. 

1 hour ago, tj_610 said:

I'm a physician

Ooo snazzy! So have you run genetics to look for TPH2 defects? I never ever ever got tired like a normal mortal till I started taking 5HTP.

1 hour ago, tj_610 said:

In the long term, I'm concerned he will poorly self-regulate in college, and get worse. Forget 8 AM classes; he might miss 10 or 11 AM classes. His odd meal schedule has resulted in mild weight loss this year, and I'm concerned he won't be healthy.

I think I'm confused here about whether HE wants to go to college or whether YOU want him to go to college. If HE wants to go to college, then HE needs to solve his problem or be asking for help to solve it. Are you going to be in the dorm with him? He's going to live at home and you're going to haul him out of bed? Sorry, but this is his problem to solve, which I think you already know. He needs to get counseling and start taking responsibility and looking for solutions for his issues. He has plenty of brains to do it.

My dd transitioned, around 18-19, from ME solving things to HER solving things. So now I'll tell her hey I read such and such would improve your such and such and she's like yeah, I've been reading about that. No, she could not eliminate 8 and 9 am classes completely from her schedule. Depends on the size of the school, but just saying that hasn't been her reality. She did switch out a class that would have been 9 am this semester even though it's required and punt on that on the faint hope it will be offered at a different time next year. But if it had been 9 am, she would have made it happen.

You already know this. You can get him through college and he's not employable. He has to learn self-advocacy skills and he has to take over his problem solving. It's a good reason to sign him up with an EF coach and a counselor and get him taking over this process. Unless you're moving into the dorm with him, he's going to have to self-advocate. Also, you know this too, but he can probably get some dorm accommodations that he might not realize yet he'll desperately wants. If he has any issues with anxiety, needing down time for sensory, etc. etc. he might be very wise to get doctor's scrips for that. Just because he functioned in a home without accommodations DOESN'T MEAN he won't need those on a college campus. It's a really expensive thing to go in and struggle or end up leaving. That shatters everything. You're only a freshman once. Go in with high supports and fade whatever you realize won't be needed. Or let the counselors/psychs/docs get to know him and let them recommend what accommodations he should use. I pretty much told my dd I wouldn't pay a dime if she didn't use the accommodations and didn't meet with her EF support person every week. Once she got there, she realized why. She had a friend have to leave due to his unaccommodated ASD. It was a devastating thing, and this was a crazy bright guy who had never used/needed accommodations before. College ain't high school.

1 hour ago, tj_610 said:

not too bad socially.

It's exciting how well he's doing, but the demands are about to GO UP. Again, if he would get some counseling, some self-advocacy and social-thinking intervention this year, he'd have those relationships and foundation. They can predict where he'll struggle in the new setting and prepare him. Then when he comes back on holidays he can debrief and get more tools. At that point he'll probably realize the questions he should have had and be more open to problem solving, reading books to learn more skills, etc.

1 hour ago, tj_610 said:

I've even told DS that going off to college is contingent on correcting this, with the alternative being a gap year to work on this (and other issues).

Ok, using melatonin, in very tiny doses, to correct sleep cycles, is an evidence-based practice. But forcing it I don't think is going to be, not for autism. Look for the research. Neither approach is addressing the underlying chemical issues going on. No, it's not rebelliousness. As far as the timing, gap years, here's the thing. If he's ready to sprout, he's ready to sprout. The question is whether the supports are HIGH ENOUGH and whether SOMEONE is prepping him enough for the challenges he doesn't realize he's going to have. What's really sad (and this happens) is when a super bright kid goes away to school and bombs for reasons they totally didn't anticipate and loses their scholarship. Then you've got so much trauma and heartbreak. Your BEST FRIEND here is a psychologist, someone who will sit him down and say Bud, I know you didn't need it till now, but now we're stepping up the game.

Do it how you want. I couldn't hold back my dd, even though she developmentally, just maturity-wise, would have been better with another year to bloom. I BEGGED her to wait. After she was at the Univ a year, she's like OH NOW I GET IT and she realized why I had been saying that. With an extra year, she was the way I had wanted her to be to go away. BUT the university kicked in supports pretty high and covered over it and made it ok!! They gave her EF meetings with a support person each week and dorm accommodations and they smoothed over it. Lots of kids are young. And the time and $$$ we put into counseling and learning self-advocacy skills was HUGE. 

So that's what I would require, just me personally, is the counseling. It might head off problems and it might help him transition from YOU solving his problems to HIM solving his problems. That's the real problem. The sleep you can fix, sure. Or at least mine did. I have to take 5HTP (to deal with my TPH2 defect) and I have to lift weights and do other serious input at night and I have to keep strict routines about turning down lights, winding down my brain. I also do something repetitive and calming before bed (solitaire).

If you want to run the genetics, well as a doc you probably have access to fancier stuff. I just downloaded the raw data from 23andme and ran it through promothease and knowyourgenetics.com Fwiw, the other thing his response to the melatonin tells you is that he's probably an undermethylator, ie he has an MTHFR defect. If he does, then he might also have some b vitamin issues. You don't want to treat them without running the genetics to check his methylation status, or you'll make it worse. B vitamins again are known to affect sleep. You can also be a mixed profile, which is what I am, where I have an MTHFR defect *and* some things that tend toward high methyls. But for that kind of person, the extra methyls in the melatonin would be noticeable and make them grouchy (or worse) pretty quickly. That's why I'm assuming he's the more common profile (90% if you believe what you read online) of undermethylation in autism. So again, treatable, not just a volition problem or bad character.

Edited January 17, 2019 by PeterPan

[Ravin]

Some people just naturally have circadian rhythms that run to being "night owls" and no amount of forced rescheduling will change it. It does sound like your son gets enough sleep, just not on a convenient schedule. This type of cycle is more common in adolescents and young adults, from what I have read, but I know people who have struggled with the expectation that they be awake when their body is screaming "sleep time" their entire lives, or at least since puberty and they are mature adults. 

I agree with some other posters that how to cope with it is something your son needs to research and learn for himself. Behavioral adaptation in order to meet his own goals is more likely to be successful than something imposed from outside. It's nice when one can find a niche or adapt one's life to one's natural rhythm's, but when that isn't practical, he needs to find ways to cope. It could mean going without sleep when necessary on some weekdays and catching up on weekends or other days (ex: if he HAS to have an early morning class, he might be better off only having such a class Tu/Th and being able to sleep in on W/F to catch up).

[texasmama]

I also have an 18 yo ASD son with odd sleep hours similar to your son’s. In fact, both of my tern sons prefer that sleep schedule.  We accommodate by scheduling classes later in the day. One semester last year, my ASD son had a dual credit class at 8 am two days a week, which was challenging but workable. It was unavoidable for that semester. This semester, his classes start at 11am.  He needs good sleep in order to function well, more so than the average person his age, due to ASD. In your shoes, I would allow your son to manage this.  I would not make college attendance contingent on it. Most of the time, he can schedule classes at times that work for him.

From experience, insight is low in these guys, and teen boy pride creates resistance to hearing feedback. Some of these experiences just have to happen to them - they fail and they learn (hopefully). It is like any other young person except the kids who are not neurotypical (ASD/ADHD) are on a slower time schedule to reach these milestones. Some of it, I believe, is developmental, meaning you cannot force it.  It will happen, just slower than most peers. 

We require our son to be ready for church and participate in family activities. His EF skills are poor, like a 10 year old.  This is after years and years of work on these. I am a safety net for him. He and I both know it. I am working actively on preparing him to be more independent but it is slow going with complex factors. We have reclassified him due to sports so he will have an extra year in high school and will be almost 20 before going to college. He may not go away but might live at home. That extra year of growth and maturity will be needed. When we made the decision to do this, a weight lifted off of me.

What I hear in your son is a resistance to accepting his diagnoses (plural) and a lack of insight about the impacts. Not uncommon.  Being smart and fairly socially adept, he has managed well. My son is also resistant to his diagnosis. I have applied for and received accommodations for the SAT and at the community college for him based on his ASD diagnosis. He has not used the CC accommodations, but every semester he presents letters to each professor. Partly, my goal is to help him become accustomed to the fact that he has a diagnosis which qualifies him for accommodations and how to access those at the CC level as preparation for a four year university. 

I hear a pride in your son for not needing accommodations (from him, not directed at you), and that is fine. But he does have a diagnosis and overcoming and learning to function well does not even all playing fields nor make him neurotypical  

You mention that your son has appeared more impaired as time goes on, and we have experienced this with our son, as well.  I believe it is as peers pull ahead and leave them further behind in the social complexities and EF skills areas. Some of these will remain because of differences in brain wiring. Some will correct with time and intentionality.

My professional background includes quite a lot of work with ASD and anxiety in kids/teens. In spite of this, I was slow to realize throughout his life at times and in some situations that his actions were not rude/rebellious/etc but rather out of the deficient theory of mind or developmental lags beyond his control. I have three other kids, one older and two younger, none with ASD, so I have a good idea what is typical from living it on a daily basis - and yet I had and still have blind spots. Forest and the trees and all...

We have given you a lot to think about here. 🙂

 

 

Edited January 17, 2019 by texasmama

[City Mouse]

My DS16, who has ADHD nut not AU, has a very difficult time waking up. Regular alarm clocks do not wake him up. I recently bought this  https://sonicalert.com/SBB500SS-Alarm-Clock (it is cheaper on amazon)

It is helping. He will wake up when it goes off...but then he still goes back to sleep, but I go in to yell at him, he is more alert and quicker to get out of bed than without it. He ha only had it for a week, and I am hoping that with regular use he will get up completely on his own. 

 

 

Edited January 18, 2019 by City Mouse

[Tanaqui]

He's got a consistent rhythm, which is better than some people have, and it's only a little later than the norm. Can he wake up 15 minutes earlier than his usual? Is it possible to start him on a 15 minute earlier wake-up time, and then gradually move it back, in quarter-hour increments, as his bedtime moves back? Gradually means GRADUAL - no more than once a week.

Does he use a sunrise simulator and/or a light box to help reset his circadian rhythm during the day? How much time does he spend outside in the sunlight?

[sbgrace]

I have a younger son (9th grade), but I thought I might add a bit because we've been through big issues with sleep and worked with the top adolescent sleep people in our state.

Some people are wired for late sleep phases all their lives. But most teens are naturally wired for late sleep phases at his age. Our sleep psych. told me she wishes schools could accommodate adolescent sleep needs with much later starts. But, alas, they don't. And, obviously, lots of teens are sleep deprived as a result. All that waking up on schedule doesn't mean they function well on school hours. They are operating sub-par/out of sync with their body rhythms. 

You have a stable sleep cycle and rested teen. I would be hesitant to try to shift things by force I think. You don't want him laying awake in bed or so fatigued it's harder to settle. I agree with others that, especially at his age, ideally he is on board with whatever you do (I suspect he'd agree to have you wake him for church for example?). And certainly you and your wife need to agree. She'll be carrying out the plans most mornings after all.

I might try some small things to maybe support his shifting in the future if needed.

Specifically, he would benefit from finding ways to learn to settle himself for sleep. My son also has difficulty powering down so to speak at night. He finally learned to use breathing and progressive muscle relaxation to settle himself at night. This has been so big here. On nights that his mind won't shut down, he finds Sleep With Me Podcasts helpful. I'll add that, for my son, mindfulness breathing practices and physical exercise during the day help him settle at night. Also, one thing that studies have shown to shift sleep forward is a small (1/2 mg) dose of melatonin in the early evening. 

 

[Pen]

If he got into and wants to attend Georgia Tech (or wherever) and that works for family finances, etc., then I suggest having him visit now for a couple of days and night between, or longer if possible, while it is in session.  

A visit can help for him to figure out for himself what schedule changes if any he needs to make.  And can help him generally to get a feel for it and to ask for advice from them about preparing for being a college student there.  

He can determine if getting up at 10 will work for  classes or not.  If not he can figure out what to do or ask for your help.  Going to bed at 1am is probably not uncommon amongst students at many colleges.  

For the short term for family issues, do what you can with quiet after ___ rules, and do what you need to do as a family other than him from a “normal” morning time onward.  He is about to start launching anyway, so not joining now for breakfast or church or so forth will probably not matter much as he will probably be at college next year anyway.  

I have a feeling this is why some teens are given a finished basement to live in—keeps it so others in family can sleep.  

[PeterPan]

3 hours ago, City Mouse said:

My DS16, who has ADHD nut not AU, has a very difficult time waking up. Regular alarm clocks do not wake him up. I recently bought this  https://sonicalert.com/SBB500SS-Alarm-Clock (it is cheaper on amazon)

It is helping. He will wake up when it goes off...but then he still goes back to sleep, but I go in to yell at him, he is more alert and quicker to get out of bed than without it. He ha only had it for a week, and I am hoping that with regular use he will get up completely on his own. 

 

 

Just as a total rabbit trail, I came across the theory years ago from the neurofeedback sites that (and I apologize for my un-techy terms here) there are sleepy waves and wakey waves and that an ADHD profile should have more of the sleepy waves in the daytime (beta, gamma, I forget), making the person ADHD, and EVEN MORE at night, when those levels are supposed to increase. So the theory then is how to increase the wakey waves, decrease the sleepy waves. And that's why the very ADHD person would then sleep SO unusually heavily, that it's basically an indication of extreme ADHD. At least that's the theory.

My dd seemed to fit that pattern. When she started stimulant meds for the ADHD, she found she wasn't falling into such a deep sleep, so she rouses better. She used to sleep about 13 hours a night AND need 1-2 hours to become human. With the meds, she rouses better and is more functional. The meds also help them go to sleep better at night by helping their brains wind down and not be revving from the ADHD.

So anyways, ADHD meds can improve it. Not saying it's everything, but it's worth looking into.

Also, the flipside of that theory was that a more anxiety-driven presentation would be high wakey waves, low sleepy waves.

[Tanaqui]

Also, question:

Quote

He insists that listening to classical music at bed time helps him relax, but then he hums Piano Guys songs all day long, so I don't know if he knows what "relax" means.

 

How does his humming songs make you doubt that classical music helps him relax or think that he doesn't know what it means?

[Pawz4me]

Purely anecdotal comments --

I don't think your son's sleep schedule is unusual at all for someone his age. IME it is very typical for college students. Or at least it would be at the school my 23 yo DS (NT) attended, and at the one my 20 yo DS (ASD-1) attends. Both are very large state universities, and both are pretty much ghost towns before 10:00 a.m. He'll fit right in. Will it pose a problem if he has early classes? Yeah. But I've yet to hear of a motivated student who had serious trouble getting himself up and getting to class. That's part of learning to adult. I'd be much more concerned about his big picture/overall motivation level to attend college and do well than I would be about one particular issue.

I'm 56 and for my entire life I've been an early bird. As in if I sleep past 5:00 a.m. I say that I slept in. I don't need an alarm clock. Ever. If I need to get up at 3:00 a.m. I can "set" that time in my mind and wake up. My father could do the same thing. That doesn't make me any more virtuous than someone who stays up late and sleeps later. This is my point, though -- I don't function well past about 6:00 p.m. By 8:00 p.m.--stick a fork in me, I'm done. Done, done, done. And yes, that presents problems sometimes. Evening meetings and social events are hard (HARD) for me. I've attempted all my life to change my sleep patterns, to push my waking and sleeping times back a bit to fit in more with what's considered "normal." I've tried on and off since I was a teen, and I've yet to have any lasting success. That doesn't mean I don't manage to function (barely) when I have to. Your DS will no doubt be the same. My theory is that modern life forces many of us to manage with less optimal sleep patterns than would be healthy for our individual selves. But despite the damage it may be doing to our long term health, most of us do manage. And I suspect your DS will, too. 

Edited January 18, 2019 by Pawz4me

[Pen]

My teen ds listens to ASMR with headphones too help relax.   There are You Tube 

Headphones might help others not be bothered by sound, if that’s an issue.

It is also possible to listen to classical music combined with binaural brain entrainment waves—on a sleep enhancement program available on apps like Brainwave 35 programs app.  

I listen to audiobooks when trying to fall asleep. Something a little boring or already read and a narrator with a soothing voice is good. 

[Terabith]

Honestly, it seems a bit overly controlling to tell an 18 year old that their attendance at college is contingent on changing their (perfectly normal and very common) sleep schedule a year in advance to please you.  If he wants to go to college, he'll figure it out.  My husband, daughter, and I have all been night owls our entire lives.  We are totally wired for the same sleep schedule as your son.  My daughter went to sleep at midnight as a toddler.   As a toddler, she slept till noon.  Some people are just wired for a particular schedule.  However, we have all managed to change our schedule when it was required for a particular reason (class, job).  It always has sucked and been hard, and we certainly have never maintained it on nights and weekends or vacations, even though we all know that would be healthier.  I would give him suggestions on ways to change his sleep schedule, but I would let any implementation be his idea and only done when needed.  But it's not truly necessary now.  I could see making things like church attendance mandatory, but I would really leave him be.  

[Lecka]

I think it has required being willing to take advice from a therapist for my husband and I to agree about when things will be handled by natural consequences, or not.  

One of my kids had a phase of skipping a lot of things and becoming very isolated, and we did not agree at all about how to handle it.  

If a child has anxiety for some reason, avoids events, and then this contributes to their emotional health not being as good — then *I* don’t think that is okay.  

I don’t think natural consquences of “let us know when you want to go out and do something, anything again” are going to cut it.  

But that is a lot of interference and it is very far from natural consequences or respecting the child’s autonomy.  

We have had this issue.

We have also had issues where *I* thought natural consequences were going okay, and my husband thought we *just weren’t doing anything.*

That is a pretty bad parenting disagreement to have.  

So I do think — if one parent is for natural consequences or non-interference, and the other parent is for taking some kind of action, that is enough reason for parents to talk to a therapist (someone who knows about autism), because I think it can take that for both parents to even feel good about natural consequences.  

Natural consequences only work when both parents are really on board with what that will look like.  

It is really easy for one parent or the other to mess up natural consequences, by preventing the consequence, or by preventing the issue in the first place.  It’s so easy.  

If two parents can honestly come to an agreement and follow through, without needing some outside autism-related opinion, I think that is great, but it’s not always possible.  

The other thing I think is — okay, op, does your wife not know about ASD?  Or does she know about it, but you don’t like what she has said?  Do you have a feeling that things aren’t being handled the right way on this?  That is totally valid, but if you are going into it saying “well I don’t know about ASD,” then you will only be helped by getting an opinion from someone your wife views as knowledgeable about autism.  

Really — we have had this situation on something where my husband thought I was being lax and lenient, and I was sure the autism professional would take my side, but she agreed with my husband!  

But in general — we have a dynamic where *I* am the one who knows more about autism l may not be as willing to listen to concerns of my husband, that may be valid.  

Another option is you might try a parent group.  

Really — I think if one parent is at the point of saying “this kid isn’t ready for college next year,” then that parent needs to feel comfortable and confident with the way things are going, and parenting decisions being made over the next bit of time.  I think that can be better, too.

I think things could be so much better as far as being on the same page, and it can be more fair when one spouse isn’t the autism expert, but can still get a fair hearing.  I think it is needed and is better for the child.  But it is not always easy to do that.  

[lmrich]

I think you have a right to be concerned. My son has the same sleep issues. He missed his morning classes more often than I would want to know. However, the larger problem was the eating. My son never really pays attention to when to eat. He was never a hungry kid; he would a ton at meals but never fix himself a snack. He lost a lot of weight in college. There were other issues as well, but I just wanted to confirm that it is wise that you help him now develop healthy habits. Help him now to develop those healthy habits. Is he willing to keep a journal or track his sleep and food? (we had no luck changing our son's sleep schedule - he still can't go to sleep before 2 but he now goes to class but just naps more)

[texasmama]

Another aside- my NT teen has tremendous difficulty waking up to an alarm. Has always been this way. He simply sleeps through everything. 

Also, both of my teen boys nap every day, sometimes for hours. They are 16 and 18. My teen girls did not do this. 

[SanDiegoMom]

I haven't read all the responses, but my ADHD kid didn't get the sleep schedule under control until she started using melatonin.  She uses the smallest dose - 1 mg I think. It's made a world of difference. She still makes choices in her schedule -- she is away at college and her job (on the newspaper) is a night time shift, she tries her best to avoid any classes before 10 (she has one that meets twice a week at 9:30 this quarter but so far she's been ok). 

She has definitely been the type to sleep through 15 alarms.  She is a very deep sleeper.  We used to blame her a lot for her choices in high school, thinking it was her fault she couldn't get to sleep earlier. But she has really tried everything -- no electronics for two hours before, reading on the paperwhite kindle, no reading, white noise in her room -- she just never felt tired until she started the melatonin. 

[Tanaqui]

4 hours ago, Terabith said:

Honestly, it seems a bit overly controlling to tell an 18 year old that their attendance at college is contingent on changing their (perfectly normal and very common) sleep schedule a year in advance to please you.  If he wants to go to college, he'll figure it out.  My husband, daughter, and I have all been night owls our entire lives.  We are totally wired for the same sleep schedule as your son.  My daughter went to sleep at midnight as a toddler.   As a toddler, she slept till noon.  Some people are just wired for a particular schedule.  However, we have all managed to change our schedule when it was required for a particular reason (class, job).  It always has sucked and been hard, and we certainly have never maintained it on nights and weekends or vacations, even though we all know that would be healthier.  I would give him suggestions on ways to change his sleep schedule, but I would let any implementation be his idea and only done when needed.  But it's not truly necessary now.  I could see making things like church attendance mandatory, but I would really leave him be.  

 

While I agree in principle, the OP did indicate that this young man is unhappy missing some group activities (like church, which I'm going to assume can't be scheduled later in the day) and is also keeping other people in the family awake at night. (And while it's easy enough for us to say "tell him not to walk around at night" it's not so easy to follow. I have trouble maintaining ANY sleep schedule, if I don't really work at it then my most common bedtime hovers between 2am and 4:30am, and it's extremely hard for me not to get up and walk around at night. I simply cannot think if I'm sitting still.) Now, with the context of my life I don't think his hours are that outre, but if they're causing him trouble it's easy enough to try some simple changes.

I've culled my advice upthread from advice typically given to people with non-circadian rhythm disorders, on the grounds that these are surprisingly common among autistics. (Indeed, I am sitting in front of my lightbox RIGHT NOW, because I do need to be on a schedule, even a sub-optimal one.)

One more thing for the OP, and off-topic a bit: You may wish to speak to your son about the fact that blurting out that he never needed accommodations is a bit impolite. I tell my kids (and sometimes their friends as it comes up) that you never know who is listening. If you finish a test early and go "Wow, that was easy!" then your classmates who are struggling may be made to feel stupid. If you make a disparaging joke about a certain group of people, then you're making somebody in that group feel bad. And if you feel the need to pipe up that YOU never needed accommodations every time your disability comes up then you're potentially making people who did need accommodations feel like they can't ever talk about that or like they are weak and shouldn't ask for help or whatever. Nobody is judging him, but by jumping in like that he sounds like he's judging other people. I had skimmed over that line the first time, but upon re-read I thought I should bring it up.

[PeterPan]

12 hours ago, Tanaqui said:

Also, question:

 

How does his humming songs make you doubt that classical music helps him relax or think that he doesn't know what it means?

Since op hasn't returned, we're talking to ourselves. The humming sounds like a stim. Pretty common, something my ds does, many kids with ASD do. And as for "relaxing" well he could do interoception work using Kelly Mahler's new curriculum https://www.kelly-mahler.com/product/the-interoception-curriculum-bundle/  As he works through it, he'll actually define physically what helps him feel certain ways so he can make those choices. The op is not incorrect to suspect the dc has an interoception deficit as part of the problem, sure.

[PeterPan]

6 hours ago, texasmama said:

Also, both of my teen boys nap every day, sometimes for hours.

Don't they say the kids grow when they sleep? That would be pretty heavy growth time for a boy, whereas girls by that age are slowing down.

 

[PeterPan]

4 hours ago, SanDiegoMom in VA said:

she just never felt tired until she started the melatonin. 

Just for your total trivia, the TPH2 gene converts tryptophan to 5HTP which eventually ends up melatonin and serotonin. So you might dig in and find she has a TPH2 defect. Pretty easy fix. And your big flag on that would be comorbid depression, anxiety, a tendency toward anything indicating low serotonin as well. The SNP for the TPH2 will be in the raw data from just the cheapest testing by 23andme.com 

[texasmama]

25 minutes ago, PeterPan said:

Don't they say the kids grow when they sleep? That would be pretty heavy growth time for a boy, whereas girls by that age are slowing down.

 

Yes! 🙂

They can sleep anywhere, too - in the living room, the car, etc. It is a return to toddlerhood with daily naps. 

[City Mouse]

19 hours ago, PeterPan said:

Just as a total rabbit trail, I came across the theory years ago from the neurofeedback sites that (and I apologize for my un-techy terms here) there are sleepy waves and wakey waves and that an ADHD profile should have more of the sleepy waves in the daytime (beta, gamma, I forget), making the person ADHD, and EVEN MORE at night, when those levels are supposed to increase. So the theory then is how to increase the wakey waves, decrease the sleepy waves. And that's why the very ADHD person would then sleep SO unusually heavily, that it's basically an indication of extreme ADHD. At least that's the theory.

My dd seemed to fit that pattern. When she started stimulant meds for the ADHD, she found she wasn't falling into such a deep sleep, so she rouses better. She used to sleep about 13 hours a night AND need 1-2 hours to become human. With the meds, she rouses better and is more functional. The meds also help them go to sleep better at night by helping their brains wind down and not be revving from the ADHD.

So anyways, ADHD meds can improve it. Not saying it's everything, but it's worth looking into.

Also, the flipside of that theory was that a more anxiety-driven presentation would be high wakey waves, low sleepy waves.

That is very interesting. My DD was very successful on medication for ADHD. We haven't ever tried meds for DS because he was more on the hyper side an the attention deficit side. As long as he is alowed to move around a lot and fight he does pretty well, but I think he might explode if he had to sit perfectly still for a long time. He could never be one of the guard at the tomb of the unknown soldier or Buckinham Palace guards are anything remotely like that. 😀 

As he gets older and school work is more demanding, and  he has to take long hours of standardized testing, we have been thinking about the idea of starting a trial of medication. this may just be the push we need.

[Storygirl]

There have been a lot of helpful comments posted so far.

I will just add that that medicating for ADHD can impact sleep, so it's something you may want to discuss. DS14 takes several meds -- generic Focalin during the day, melatonin at night (makes a big difference for him), and clonidine at night. We added the clonidine because of tics (Tourettes). And it's the clonidine I wanted to mention, because it has been found to help some with ADHD and also makes people sleepy. Since you say his hyperactivity kicks in during the evenings, perhaps finding a med he can take at that time could help both the ADHD and the sleep.

I can't tell you what will work for anyone else, of course. Just planting something for you to ponder and discuss with his physician. Clonidine is cheap, is not a controlled substance, and is not obviously an ADHD med (in case your son would be reluctant to take something specifically for ADHD to college with him). There may be other meds that help with ADHD and sleep that can be taken in the evenings; clonidine just happens to be what I'm familiar with, so I am mentioning it.

 

Edited January 19, 2019 by Storygirl

[Storygirl]

I also think the big question not addressed in your OP is..... does he want to change?

If he does not want to change, it's going to be hard to impose anything on him. If he does want to change his habits, he obviously needs to be involved in all of the decisions, because if he is not onboard, he will not continue with them once he is living away from home. You and your wife disagree, but what does he want?

My kids are mostly younger. DH and I still tell our young teens when to go to bed. I am honestly not averse to parents setting a sleep schedule for the household. We have done so here. But it's different for an 18 year old who is probably going away to college in a few months and who has been used to staying up late. If you impose requirements on him now, will he object?

[Innisfree]

7 hours ago, Storygirl said:

I also think the big question not addressed in your OP is..... does he want to change?

I can say first hand that, even dealing with younger teens, if they don't want to change sleep patterns it's really hard. We are living this now. Dd14 wants to stay up all night and sleep all day. She does not see why she should have to conform to society's schedule or the family's. Left alone, she drags herself out of bed around 5:30 pm, walks her dog as it's getting dark, then stays up until around 6:00am.

Obviously we aren't letting this happen, but it's the pattern she started to slide into over the Christmas break. She is still homeschooled, but has a few outside classes. Getting her moving is murder. And to cap it all, she refuses meds, so no more melatonin, though it can help.

The heart of the matter is that she does not want to change.

So, we're approaching this from multiple fronts, and I'll be glad to get any other suggestions. But atm I'm trying to make sure she has things going on that she wants to be awake for, make sure she has time outside and exercise, and have consequences in place if she doesn't get moving and do the things that must be done in the morning hours. Getting up and facing schoolwork is no fun, but morning is the time I have available, so that's when we need to work. Results so far are mixed.

[Lecka]

https://www.spectrumnews.org/features/deep-dive/get-children-autism-sleep/?cn-reloaded=1

This is a longer article about sleep from last year, and spectrumnews.org has more articles about sleep.  

For context that one of my kids was school avoidant for a while, I tend to see a lot of escapism for anyone who might be stressed by the hustle, bustle, and social demands of being awake in the day vs. the night.  

For a social demand -- just the presence of another person can be considered a social demand.  Being able to be the only one up can mean complete control of the environment and zero social demands.  

I think that it can seem like "well there aren't social demands in the day" but just being around family members at all can be a social demand.  

For my younger son, we had a long phase where I would take him out alone for several hours on weekend afternoons, because he would be so overstimulated by just family members doing their weekend things.  *Nothing out the ordinary.*  But he would get SO overstimulated.  Looking back I don't really know "why" he would get so overstimulated.  I don't really think it was primarily sensory but maybe more than I think?  I tend to think it was more just the lack of routine?  Or maybe he would get frustrated over little things and it would build up?  I do not know.  I just know he would get very stressed from routine, casual weekend days.  

Anyway -- escape/avoidance is the "answer" here so often, it is always my first thought, more than any other explanation.  Or -- it is probably going to be a part of an explanation in some way.  

I also really get, on a personal level, and I think my husband would too, how nice it is to be the only one awake or the only one home.  We both LOVE it.  

[Innisfree]

36 minutes ago, Lecka said:

For context that one of my kids was school avoidant for a while, I tend to see a lot of escapism for anyone who might be stressed by the hustle, bustle, and social demands of being awake in the day vs. the night.  

For a social demand -- just the presence of another person can be considered a social demand.  Being able to be the only one up can mean complete control of the environment and zero social demands.  

Thank you for this. I think it's very pertinent for us. After all these years, and even though I should know better, sometimes I have a hard time moving past frustration with behavior that seems-- and is-- inappropriate, and focusing on just how hard stress and social demands are for dd.

[Lecka]

As another thought -- something I LOVE about being the only one home or the only one awake, is that I am definitely, definitely not going to be interrupted.  Sometimes I just hate to be interrupted, and it is nice to just KNOW that I am not going to be interrupted.  

For me -- it would help me to have some times alone in the house or pretty guaranteed not to be interrupted.  

I would wonder, what does your daughter LOVE about being the only one up at night?  Maybe there is something?  

And then try to add that to the daytime, too.  

I glanced back at the article I linked, and it says only 1/3 of sleep issues can be helped by behavioral strategies, only.  

But if there is something she likes about being up at night, it's going to be either:  One, something reinforcing about being up at night.  Or, two, the lack of something about being up in the day that is NOT reinforcing for her.  That is the most basic.  

So -- are there more details about what those things might be for her? 

If you do schoolwork first thing in the morning, and it is not reinforcing, I think that ----- even if it doesn't work for your schedule, you might look at beginning with something very, very reinforcing, and then having a neutral activity (here that is going to be a snack or a story time, or a shower).  Then transition from the neutral activity to schoolwork.  

That is considered a good kind of schedule, and that is my morning schedule for my son with autism.  He starts his day with youtube or video games, and the earlier he gets up the more time he gets (within reason).  This is motivating for him, and he is able to transition away from youtube/video games to a neutral activity when it is part of a routine, he knows the time he has, etc.  This is a hard transition though, and maybe it's not the best choice if it's too hard to transition away from it.  

Then in the morning -- a neutral activity is eating.  

Then from the neutral activity -- he can transition to a less-preferred task.  

It is much better for him than starting the day and immediately, or pretty quickly, having a less-preferred task.  He just isn't going to do as well.  

But he is not really a "strike while the iron is hot" kind of kid, and he can transition (with thoughtful transitions lol).  

This is different from another kind of system of transitions, too, where you always do less-preferred, and then do more-preferred.  This is because -- you don't have to worry as much about going from more-preferred to less-preferred!  But my son is not great at just *starting* with something less-preferred.  

You also might think about neutral activities (or parts of a routine), and then ----- those things that are preferred, but they aren't so highly preferred that it will be too hard to transition away from them (if there are things like that).  

There is something called "behavioral momentum" where basically -- kids are doing things that they basically like or find neutral, and then -- oh, they don't think it's so bad -- and then it makes it easier for them to transition into doing something they don't like as much.  

The thing is -- it doesn't have to take time, it can be something that takes less than 5 minutes.  

And ------ it is just different for me as a parent to be bracing myself for a fight, or to be doing something I am pretty sure will get a good reception from my child.  It is easier for me!  And then we are (hopefully) in a better place and the potential fight is hopefully going to be defused to some extent, or maybe at least entered into with some more goodwill on both sides, etc.  

My 10-year-old is pretty easy-going though, and he transitions well.  But just thinking about the transitions has always been good here.  

My oldest is 13 and I am working hard to have civil communication with him right now.  

[Innisfree]

Lots to think about there. I'm going to have to mull it over a bit, but thank you.

[Lecka]

With having behavioral therapy, I have had a lot of times when I have been frustrated, and the therapist has identified demands that were nowhere on my radar.  

A lot of demands in our home are based on siblings:  and a surprising amount comes from just not being able to do what he wants in a certain part of the house, because they are there and also doing something in that part of the house.  

Right now he and I are the only one up, and he is LOVING having the tv to himself and having a very long turn of Plants vs. Zombies on the PS4.  I purposefully stagger bedtimes to the extent possible, lol.  

[Innisfree]

Yes! Only one sibling here, but two teen girls, closely spaced in age, with similar interests, rivalry, and not a lot of flexible thinking anywhere---> lots of stress.

But, they *both* want to be up at night. Oy. One can handle it, get roughly adequate sleep, and manage her assignments. The other can't.

Got to go get them moving now... 😀

[Lecka]

Good luck 🙂

I am letting everyone else sleep in and it is nice 😉 

But we will be busier in the afternoon.  

Edited January 19, 2019 by Lecka

[drjuliadc]

I would try magnesium for sleep issues since 80% of the population is low in it.  Probably closer to 100% of spectrum people are low in it.  400 mg per day is the adult RDA amount.  Give it with the dinner meal.  

I also like 5htp better than melatonin.  Melatonin works but a person who needs it needs the serotonin too.  However 5htp pills are bigger, you have to take more of them and it doesn’t come in a yummy liquid form. That’s why I give my “only hyper at night” 6 year old melatonin at bedtime.  Two drops of it do the trick.  I am going to investigate getting the 5htp into him somehow though.

The mag and melatonin have changed his personality for the better.  Good sleep just makes their brain work better on many levels.

 

[Lecka]

To explain more.... if right now there is nothing she likes about getting up in the morning, then she is not starting at neutral.  She is starting at “I don’t even want to be awake right now, let alone schoolwork.”  

That makes it a different situation than if she was starting at neutral and then doing a less-preferred activity.  

So you can look at just providing positive reinforcement or a positive association of some kind, for just being up and around in the morning.  

Then hopefully that can go to neutral and then less-preferred.  

In a way it is still “first less-preferred, then more-preferred,” which really IS supposed to be the best (it is called the premack principle).  

BUT it just starts the “first” thing as, not schoolwork, but just being up and around.  

My son hated, hated, hated toothbrushing and putting on shoes for a long time.... so then I can’t say “oh, well, going into school is the First thing,” because really — he has already had to do two very non-preferred tasks at this point.  

So if there are actually some non-preferred things, then — it’s okay to back up and say “let’s try to reinforce those things.”  

Where — if you start from “what’s my goal here” then it may be skipping some things that are having a lot of impact on how the day is going.  But they are NOT related to goals/tasks/items like “do schoolwork.”  

So if you know something is very non-preferred, it doesn’t work to just skip over it just because it is not related to what needs to get done!  Because the child is not skipping over it, it is part of what is going on for the child.  

This is where people can try to observe and try to see what those things are.

But sometimes I think we all know exactly what they are, it is just “not getting things done” to spend time on them.  Or it just seems too ridiculous.  

Just my thoughts!  I have been thinking through some things wrt my 13-year-old recently, and while he is definitely wrong, I could be more effective.  But I think I am going very hands-off in some ways that wouldn’t be possible if he needed more support.  So I think he doesn’t need it.  He doesn’t want it.  And then my 10-year-old really shows every sign of being easy-going, and he will still need support as he gets older, so I am hopeful with him, lol.  

Edited January 19, 2019 by Lecka

[PeterPan]

4 hours ago, drjuliadc said:

However 5htp pills are bigger, you have to take more of them

This makes zero sense. The time release 200mg 5HTP from Natrol is a reasonable size (slightly thicker than a cheerio) and no big deal for my ds to take, even with his apraxia and delayed ability to take pills. He takes one in the morning, one at night, and they seem to last 12-13 hours, which creates a very nice, stable effect.

Also, people should be running genetics before giving 5HTP to kids who possibly have MTHFR defects. If the dc is an undermethylator, like my dd, then 5HTP straight, without any additional methyls to keep them perked up, is going to be very bad voodoo. This is how my dd is. Per the TPH2 gene she needs the 5HTP, but it drops her methyls. 

4 hours ago, drjuliadc said:

I would try magnesium for sleep issues

Magnesium goes on the same receptor as GABA. We finally started my dd on a dedicated magnesium because we needed to deal with some other things (anxiety, etc.). She's taking a malic acid form that seems to be really good for her. I tried it and my anxiety went OFF THE CHARTS, so I'm not sure what is in it (methyl donor? I don't know), but it's great for her with a more straight MTHFR profile and not good at all for my mixed. I take regular old cheap magnesium, go figure.

6 hours ago, Innisfree said:

Left alone, she drags herself out of bed around 5:30 pm, walks her dog as it's getting dark, then stays up until around 6:00am.

I would take her to a counselor and figure out what's going on. Like Lecka, I'll say it may have more going on than just chemicals. Her body CAN do it, so she's doing it. But the point is why she wants to do it. Avoiding, stressed about things, depression, something she's doing late at night (hiding, who she's talking to). You can try to make her conform, but the real issue is to get to the bottom of why she wants this. That's why I would bring a counselor into the team. Whatever she's not telling you, she can tell them and at least start to process.

Also, remember she's still a minor and you still have some leverage. If there's AT ALL a possibility of depression, that's the thing to be aggressive on and insistent on treating, because your tools go down the drain at 18 when they can choose not to. Even now they can sit there and not participate and get dumped. But who knows, if the person listens, she may get on board. Forming those problem-solving relationships is worth the money. The teen years are pretty crunchy anyway, and it's ok to have a team helping them problem solve.