Screen time issues with ASD

[WoolC]

We’ve been a low to no screen family for the first 9 years of my son’s life.  This year we’ve introduced lego boost, the Wii and Minecraft.  We were limiting it to one hour after 4pm and that limit was working pretty well.  Now ds is getting really into scratch coding and beginning  a bit of graphic design.  He would literally do this from 6am til bed if I let him.  On the one hand, to do this he is reading, problem solving and touching on some math concepts.  These are all skill areas that he wouldn’t be working on outside of school with me normally.  As he’s working, he gets up frequently to narrate what he’s doing to me, so it’s not like he’s zoned out to the world around him.  He has a real sense of pride and accomplishment with this, especially when he shares a finished project.  He seems calmer and well regulated when he’s working on the computer as well.  
When he’s off the computer, he’s thinking about the computer, less regulated, high anxiety.  I’m not sure if this is just because it’s not the preferred activity or if the screen time itself is causing issues.  I’ve had autistic adults tell me that screen time is actually helpful for them socially and for managing anxiety, yet a quick google predicts absolute doom for any child with autism using screens.  I’m feeling really conflicted on how much time to allow for this.  How are you guys handling screens, limits, etc?  How much time do you allow for academic-ish pursuits on tech as opposed to straight up video games?  Totally out of my element here and feeling mom guilt in both directions!

Edited April 27, 2020 by WoolC
I can’t spell today!

[WoolC]

Both...but the less regulated also coincides with the shutdown, so it’s hard to tell.  He’s super anxious about the virus despite us not turning on news or discussing it frequently around him.  I think the change in our weekly routine outings is increasing his anxiety as well.  When I have talked to him about the behaviors he’s been having and what’s up, he’s said it’s because everything has changed and he’s terrified of having another soar throat (he had a severe flu in early March).  I think the computer might be stimulating enough to quiet the anxiety, but when he’s off the computer behaviors resurface. He believes the screen time is helping.

[PeterPan]

57 minutes ago, WoolC said:

Both...but the less regulated also coincides with the shutdown, so it’s hard to tell.  He’s super anxious about the virus despite us not turning on news or discussing it frequently around him.  I think the change in our weekly routine outings is increasing his anxiety as well.  When I have talked to him about the behaviors he’s been having and what’s up, he’s said it’s because everything has changed and he’s terrified of having another soar throat (he had a severe flu in early March).  I think the computer might be stimulating enough to quiet the anxiety, but when he’s off the computer behaviors resurface. He believes the screen time is helping.

Ok, so you have different issues going on there. You started off asking whether he'd get addicted. But what you're saying is he's going there to forget the coronamess. Have you thought about getting him an anxiety med? If you get the anxiety treated, then he has the CHOICE to be on the computer or not. Right now, he's not on there by choice but because he's struggling to cope.

So yes, just in general, he could get really obsessed with screen time. It feeds dopamine and is an easy retreat. If you've previously had reasonable restraints and been able to enforce them, you're wise to continue them in some fashion. Think about what is healthy for him for long term.

But for mental health, no, get him the anxiety meds. My ds started falling into his tech as his stress went up and was able to walk away and ask to do other things with the meds. I'm the same way. With the meds, I have the choice and can do it more in balance, servicing ALL the areas of my life. I tell my ds that healthy brilliant people have many areas of interest that they accumulate with time. When I feel well, I can service more of them, exercising, doing word searches, calling friends, maintaining laundry and cooking, learning instruments, etc. When I'm not my best, that list dwindles down further and further. And just for me, as a btdt person, I wouldn't *encourage* that. I'm not saying it's immoral or wrong. I'm just saying even people who tend to do one thing eventually accumulate more and realize they'd like to do more. It's something to grow into.

So if he's on tech to cope, I'd give him treatment options for his anxiety (CBT, mindfulness, meds, more sensory, whatever you want) and see if he can get back to the balance of activities he previously had. However it sounds like his anxiety is pretty high, maybe higher than it *normally* is and it might be good to have access to tools he doesn't *normally* need. Or even just some cognitive work. I have a loved one whose anxiety was flaring up and some straightforward information calmed it down. Maybe information would help him? With my ds, I don't do that. We pretend the world is normal, no news around him, nothing. But with this adult loved one, he needed more information to allay his fears. And there are things you can say that are true or might be true enough to calm his anxiety. Like they're doing antibody testing and finding 50% of the population in some cities has already had it, a majority were assymptomatic, if you're worried we can test you with a pulse oximeter, if your O2 is fine and you have no fever you're fine, etc. 

 

Edited April 27, 2020 by PeterPan

[PeterPan]

4 hours ago, WoolC said:

Totally out of my element here and feeling mom guilt in both directions!

Mom guilt for not being omniscient? 

You said he has anxiety, so offer him treatment. Retreating to the computer is not treatment. But honestly, once he has tools for his anxiety, I wouldn't worry about it a ton beyond that. It's true he'll develop a *habit* and routine that will be hard to break. I think if you can keep some structure and tidy it a bit, you're wise. But you don't have to allow excessive amounts for mental health. That's not healthy for anyone. There's appropriate use for mental health and then there's falling into the aut because you're stressed. If he has the meds and proper anxiety treatment, he can sort that out for himself.

See here's the thing I found. I'm so hyporesponsive for almost everything that I had no clue what my anxiety symptoms were. Other people could see them, but I couldn't. So this coronamess made my symptoms flare up SO MUCH that they were glaringly obvious even to me. I sleep through root canals, birth 11 pound babies at home etc. I got on the meds and as they would wear off these *teeny tiny* symptoms would come back. I'm telling you my symptoms of anxiety are *so hard to notice* I didn't realize what I was feeling. To me, one of them is like a kitten meow, the most faint kitten meow. Or I'll yawn one time. That's all I get. For real. But I take the meds and feel so much better. It will turn out my body was hurting, my head was hurting, etc., and I didn't feel any of it, wasn't mentioning it because I don't pay attention to my body enough, no matter how much I work on it and I under register.

So I'm saying it's possible his symptoms are much more significant than even he realizes and that trying the meds will be educational. Kelly Mahler just mentioned a new study that showed that caregivers (both parents and professionals like educators) CONSISTENTLY UNDERESTIMATED the interoceptive awareness problems of the people they were filling out forms for. So it's so, so easy to miss the needs of the person because others can't see it (the symptoms are invisible) and the person himself/herself is underregistering and not yet self-aware. I think it means caregivers have to assume there are significant interoceptive deficits beyond what they realize and that the person may be underreporting the degree of the symptoms. 

[WoolC]

3 minutes ago, PeterPan said:

Ok, so you have different issues going on there. You started off asking whether he'd get addicted. But what you're saying is he's going there to forget the coronamess. Have you thought about getting him an anxiety med? If you get the anxiety treated, then he has the CHOICE to be on the computer or not. Right now, he's not on there by choice but because he's struggling to cope.

So yes, just in general, he could get really obsessed with screen time. It feeds dopamine and is an easy retreat. If you've previously had reasonable restraints and been able to enforce them, you're wise to continue them in some fashion. Think about what is healthy for him for long term.

But for mental health, no, get him the anxiety meds. My ds started falling into his tech as his stress went up and was able to walk away and ask to do other things with the meds. I'm the same way. With the meds, I have the choice and can do it more in balance, servicing ALL the areas of my life. I tell my ds that healthy brilliant people have many areas of interest that they accumulate with time. When I feel well, I can service more of them, exercising, doing word searches, calling friends, maintaining laundry and cooking, learning instruments, etc. When I'm not my best, that list dwindles down further and further. And just for me, as a btdt person, I wouldn't *encourage* that. I'm not saying it's immoral or wrong. I'm just saying even people who tend to do one thing eventually accumulate more and realize they'd like to do more. It's something to grow into.

So if he's on tech to cope, I'd give him treatment options for his anxiety (CBT, mindfulness, meds, more sensory, whatever you want) and see if he can get back to the balance of activities he previously had. However it sounds like his anxiety is pretty high, maybe higher than it *normally* is and it might be good to have access to tools he doesn't *normally* need. Or even just some cognitive work. I have a loved one whose anxiety was flaring up and some straightforward information calmed it down. Maybe information would help him? With my ds, I don't do that. We pretend the world is normal, no news around him, nothing. But with this adult loved one, he needed more information to allay his fears. And there are things you can say that are true or might be true enough to calm his anxiety. Like they're doing antibody testing and finding 50% of the population in some cities has already had it, a majority were assymptomatic, if you're worried we can test you with a pulse oximeter, if your O2 is fine and you have no fever you're fine, etc. 

 

I actually made some phone calls last week to try to get the ball rolling on anxiety meds, we’re definitely reaching uncharted waters in ds anxiety behaviors and it’s getting scary.  So far, I’m reaching voicemail services.  Apparently most of the specialists and clinics in our area aren’t in full operation now.  I’m waiting on a call back from our primary doctor referral secretary as well.  I called our local crisis line for autism families yesterday to see where we could get in for services quickly and they took my intake information and told me to expect a call back in 2 to 3 days for referrals.  I’m sure there are a lot of families running into this same issue.  Mental health issues are at an all time high at the same time we’ve shut down all of the resources, I hate to know the impact this is having.

[PeterPan]

Just now, WoolC said:

we’re definitely reaching uncharted waters in ds anxiety behaviors and it’s getting scary.

Yes, my ds started going into my pantry and rearranging and then completely flipping out if I moved anything. It was extremely OCD and scary.

1 minute ago, WoolC said:

most of the specialists

Does he have a GP or ped? We use a family practice doctor that I switched us all to over the last few years. Now our family practice doctor may just be a dream, but he was willing to prescribe a med for ds, no problem. They have short acting meds, low side effects, things a GP is willing to prescribe. I've talked with people who said their peds would hand out smaller stuff. So maybe a short term option while you sort out the long term? Like you tell the ped you need a med NOW and need to be seen NOW? 

Or push the issue. Our state has a behavioral health emergency clinic for kids. 

The med we're using ups dopamine, which ups aggression. I've been having to give him other stuff to pull that back down. I'm not saying it's like a flawless process. Do you know his methylation status and genetics? If you do, it's easier. At least we understood what we were seeing when the reaction had. 

But yeah, ds went from totally locked up to being back to his smiling self with the meds. It HURTS to have this level of untreated anxiety that locks you up. I would encourage you to get really Mama Bear, assume it feels much worse than you even realize, and see what someone will make happen for you. Maybe the ped. 

How is he sleeping at night? Has that gotten wonky too? I thought I was sleeping fine and he was sleeping fine, then when we started the meds we got REALLY TIRED. I think we were just not sleeping well or something, because now I'm back to my normal 6 1/2.

7 minutes ago, WoolC said:

I’m waiting on a call back from our primary doctor

Will he write a scrip? We're not talking about a hard ask. If he didn't need it before, you're not necessarily needing some huge dramatic option. They have short acting stuff that is just taken as needed, not addictive, not long term. He might be willing to write that. 

[WoolC]

The more I think about it, part of the issue is that ds frequently gets new intense interests and we usually let him use all of his free time to devote to that interest.  He normally fizzles out after awhile and starts something new.  The problem here is it’s the first time the interest has been tech related and it’s occurring at a time where there is more free time than usual.  It’s hard for him to understand why this interest is being limited in a way I never had to do in the past.  He’s also very resistant to me increasing expectations or encroaching on what would normally be considered free time.  Just a mess all around.

[PeterPan]

3 minutes ago, WoolC said:

there is more free time than usual.

Well if it only intrudes into time that previously would have been spent going to activities or something, that's maybe not so big a deal. 

5 minutes ago, WoolC said:

 He’s also very resistant to me increasing expectations or encroaching on what would normally be considered free time.

Increasing demands when he's stressed is hard.

6 minutes ago, WoolC said:

 He normally fizzles out after awhile and starts something new.

I think you're right this is not likely to fizzle. And what he may find is he can have a couple areas, like his new thing and holding some others. It's just a growth thing he could try to do, rather than being stuck doing only one thing. And I'm all for the one thing ability being a superpower!! Like I'm there, I'm that way. But I've also realized that being highly intelligent means I could *hold onto* some of my previous things while moving forward and adding new. Then I can make a plan, a daily routine, that helps me service more areas. Otherwise I just do one thing. 

Well I really hope you can find him some satisfactory treatment. I can see why you want it to be someone who's prepared to help work through the issues thoroughly. He's had a complex history and has a complex situation. It may be tricky. If I hadn't know the genetics and just had given the buspar and been surprised by the flare up of aggression, that would have been a mess. But fwiw the med we're using is not a methyl donor. That would have been dangerous for him straight out of the bottle. This just has the effect a bit later and we have to tamp it down. It took us a while to figure it out. Some people do need more complex care, yes. 

Well good, keep us posted. I hope they get you in and you get some options. 

Btw, do you have a weighted blanket? Does he seek sensory? I can't tolerate it all the time but I have a really heavy 20lb weighted blanket I use. It's pulling out the big guns, haha. You might be able to do some things like that and get it to calm down for a few hours maybe. Also he can carry heavy things around the house. Jugs of milk might work. I have ds carrying 15 pound weights around, farmer carry. Or use lower weights and do bicep curls, squats, quarter squats, etc. Anything to get that input in and get the body to calm down a bit. 

[WoolC]

11 minutes ago, PeterPan said:

Yes, my ds started going into my pantry and rearranging and then completely flipping out if I moved anything. It was extremely OCD and scary.

Does he have a GP or ped? We use a family practice doctor that I switched us all to over the last few years. Now our family practice doctor may just be a dream, but he was willing to prescribe a med for ds, no problem. They have short acting meds, low side effects, things a GP is willing to prescribe. I've talked with people who said their peds would hand out smaller stuff. So maybe a short term option while you sort out the long term? Like you tell the ped you need a med NOW and need to be seen NOW? 

Or push the issue. Our state has a behavioral health emergency clinic for kids. 

The med we're using ups dopamine, which ups aggression. I've been having to give him other stuff to pull that back down. I'm not saying it's like a flawless process. Do you know his methylation status and genetics? If you do, it's easier. At least we understood what we were seeing when the reaction had. 

But yeah, ds went from totally locked up to being back to his smiling self with the meds. It HURTS to have this level of untreated anxiety that locks you up. I would encourage you to get really Mama Bear, assume it feels much worse than you even realize, and see what someone will make happen for you. Maybe the ped. 

How is he sleeping at night? Has that gotten wonky too? I thought I was sleeping fine and he was sleeping fine, then when we started the meds we got REALLY TIRED. I think we were just not sleeping well or something, because now I'm back to my normal 6 1/2.

Will he write a scrip? We're not talking about a hard ask. If he didn't need it before, you're not necessarily needing some huge dramatic option. They have short acting stuff that is just taken as needed, not addictive, not long term. He might be willing to write that. 

Our pediatrician retired in December so we don’t have a great working relationship with another doctor at the practice yet, so more rotten timing on that front.  We haven’t done genetics, though I do have the 23andme kit in the house, I need to get on that.  I find so much of that stuff overwhelming, not really sure what I’m looking for,  but I need to dive in.  

I was really hoping to get into our nearby university clinic that specializes in ASD and meds so that we could start off in the right direction and possibly avoid scary adverse reactions.  It’s where all of my local friends have had success in finding the right meds for their kids.   I’m kind of just trying to go low key, stick to the routine and keep him occupied as best I can until then.  I do think I’ll have to go full on Mama Bear to get any results here quickly.  

Sleep is wonky, but it has always been wonky.  He’s been on melatonin for at least 4 years now and literally almost never sleeps through the night.  
 

[WoolC]

4 minutes ago, PeterPan said:

Well if it only intrudes into time that previously would have been spent going to activities or something, that's maybe not so big a deal. 

Increasing demands when he's stressed is hard.

I think you're right this is not likely to fizzle. And what he may find is he can have a couple areas, like his new thing and holding some others. It's just a growth thing he could try to do, rather than being stuck doing only one thing. And I'm all for the one thing ability being a superpower!! Like I'm there, I'm that way. But I've also realized that being highly intelligent means I could *hold onto* some of my previous things while moving forward and adding new. Then I can make a plan, a daily routine, that helps me service more areas. Otherwise I just do one thing. 

Well I really hope you can find him some satisfactory treatment. I can see why you want it to be someone who's prepared to help work through the issues thoroughly. He's had a complex history and has a complex situation. It may be tricky. If I hadn't know the genetics and just had given the buspar and been surprised by the flare up of aggression, that would have been a mess. But fwiw the med we're using is not a methyl donor. That would have been dangerous for him straight out of the bottle. This just has the effect a bit later and we have to tamp it down. It took us a while to figure it out. Some people do need more complex care, yes. 

Well good, keep us posted. I hope they get you in and you get some options. 

Btw, do you have a weighted blanket? Does he seek sensory? I can't tolerate it all the time but I have a really heavy 20lb weighted blanket I use. It's pulling out the big guns, haha. You might be able to do some things like that and get it to calm down for a few hours maybe. Also he can carry heavy things around the house. Jugs of milk might work. I have ds carrying 15 pound weights around, farmer carry. Or use lower weights and do bicep curls, squats, quarter squats, etc. Anything to get that input in and get the body to calm down a bit. 

Yes! He sleeps under a weighted blanket every night but I rarely think about it during the day.  When things got rough yesterday afternoon I pulled out a spare weighted blanket and offered it and he’s been chilling out with it a lot throughout the past two says.  Big help!

[PeterPan]

2 minutes ago, WoolC said:

I do have the 23andme kit in the house, I need to get on that.

Well sure, that would be a good thing to get done. All you do is spit and seal. The hardest part is remembering the timing and when you need to stop eating, brushing, etc. to be ready to do it.

3 minutes ago, WoolC said:

I find so much of that stuff overwhelming, not really sure what I’m looking for,  but I need to dive in.  

Cross that when the results come? 

3 minutes ago, WoolC said:

I was really hoping to get into our nearby university clinic that specializes in ASD and meds so that we could start off in the right direction and possibly avoid scary adverse reactions.  It’s where all of my local friends have had success in finding the right meds for their kids.

Well if they're having so much success, I can see why! Honestly, I only hear horror stories in our area, people having bad results even with big name specialists and professionals. 

4 minutes ago, WoolC said:

Sleep is wonky, but it has always been wonky.  He’s been on melatonin for at least 4 years now and literally almost never sleeps through the night.

Oh dear.

5 minutes ago, WoolC said:

I’m kind of just trying to go low key, stick to the routine and keep him occupied as best I can until then.

Yup.

 

[PeterPan]

10 minutes ago, WoolC said:

Yes! He sleeps under a weighted blanket every night but I rarely think about it during the day.  When things got rough yesterday afternoon I pulled out a spare weighted blanket and offered it and he’s been chilling out with it a lot throughout the past two says.  Big help!

Have you tried hot sauce on him? My friend sent me a bottle of some reasonably hot bbq sauce and I either eat that straight out of the bottle or put it on eggs. But let him eat it straight and see what happens. He may like it. If you don't have that, maybe you have chipotles in adobo and he could dip his finger in the adobo? I keep very hot peppers chopped in the freezer and put them in eggs, etc.

The eggs are because my comfort food is always soft. You can always tell when I'm a mess because everything goes SOFT. I'll start making soup 5 times a week, eat eggs and yogurt, etc. LOL

Have you tried watching roller coasters on youtube? They make me sick to watch, haha, so they must be stimulating. Universal and Sea World Orlando have great ones to watch. Also Disney Parks on youtube has some of their parades uploaded. You can turn up the music and make the screen big, and you get the visual, the music, etc. With my ds I just call him over and say hey let's watch a parade, let's watch rides.

Would he be interested in trying an instrument? I'm doing the ukelele these days. Got it through the library, and it's kind of just enough. Our autism school bought a scad of them that are marked with stickers for finger placement. I think they're around $60 on amazon. Music can be good sensory. Harmonica, drums, accordian, whatever. Something he can do 10 minutes a day with intention.

Humming stimulates the vegas nerve. So humming or loud singing (to Disney music on Alexa/Amazon music of course!) is calming. Just tell Alexa to play Disney music and great lists will pop up. https://www.arcvic.org.au/34-resources/402-vagus-nerve-exercises  Here's a list of more vague nerve exercises.

I'm not saying any of that is a replacement for meds, but it might *help* a bit.

Edited April 28, 2020 by PeterPan

[WoolC]

14 minutes ago, PeterPan said:

Have you tried hot sauce on him? My friend sent me a bottle of some reasonably hot bbq sauce and I either eat that straight out of the bottle or put it on eggs. But let him eat it straight and see what happens. He may like it. If you don't have that, maybe you have chipotles in adobo and he could dip his finger in the adobo? I keep very hot peppers chopped in the freezer and put them in eggs, etc.

The eggs are because my comfort food is always soft. You can always tell when I'm a mess because everything goes SOFT. I'll start making soup 5 times a week, eat eggs and yogurt, etc. LOL

Have you tried watching roller coasters on youtube? They make me sick to watch, haha, so they must be stimulating. Universal and Sea World Orlando have great ones to watch. Also Disney Parks on youtube has some of their parades uploaded. You can turn up the music and make the screen big, and you get the visual, the music, etc. With my ds I just call him over and say hey let's watch a parade, let's watch rides.

Would he be interested in trying an instrument? I'm doing the ukelele these days. Got it through the library, and it's kind of just enough. Our autism school bought a scad of them that are marked with stickers for finger placement. I think they're around $60 on amazon. Music can be good sensory. Harmonica, drums, accordian, whatever. Something he can do 10 minutes a day with intention.

Humming stimulates the vegas nerve. So humming or loud singing (to Disney music on Alexa/Amazon music of course!) is calming. Just tell Alexa to play Disney music and great lists will pop up. https://www.arcvic.org.au/34-resources/402-vagus-nerve-exercises  Here's a list of more vague nerve exercises.

I'm not saying any of that is a replacement for meds, but it might *help* a bit.

He doesn’t do spicy or roller coasters, but good thoughts.  I’m definitely trying to be intentional about sensory diet stuff with him now.

[WoolC]

And ukulele ordered for both kids!  I was talking with my youngest ds today about learning an instrument and this is perfect.  Thanks! 

[kbutton]

21 hours ago, WoolC said:

When he’s off the computer, he’s thinking about the computer, less regulated, high anxiety.  I’m not sure if this is just because it’s not the preferred activity or if the screen time itself is causing issues.  I’ve had autistic adults tell me that screen time is actually helpful for them socially and for managing anxiety, yet a quick google predicts absolute doom for any child with autism using screens.  I’m feeling really conflicted on how much time to allow for this.  How are you guys handling screens, limits, etc?  How much time do you allow for academic-ish pursuits on tech as opposed to straight up video games?  Totally out of my element here and feeling mom guilt in both directions!

It's a balancing act, sigh. From the rest of your posts, you're in a spot where there are a lot of variables making this not easy to parse out. I like what Peter Pan is telling you though--anxiety needs its own tools.

So, I think it's good to listen to adults on the spectrum, but I don't know how easy it is to match up the needs of a person writing a blog post to your own child, KWIM? Other times, I think of all the tools available now that were not as refined or not available at all that kids respond well to now, and I wonder if that is going to change the trajectory--sometimes I think the specifics of what is beneficial will change while the underlying "how" and "why" you select the tools you use might be the same. IDK for sure. Anyway, we found that if something seemed like it was making my son less regulated, we regulated that activity. He had other things to choose from, and those things were beneficial. Sometimes we just waited on activity until we felt like he had enough evidence of regulation in other ways that we could let him do it, if that makes sense. 

This instance is hard because of the timing and the activity itself is more than play. 

16 hours ago, WoolC said:

The more I think about it, part of the issue is that ds frequently gets new intense interests and we usually let him use all of his free time to devote to that interest.  He normally fizzles out after awhile and starts something new.  The problem here is it’s the first time the interest has been tech related and it’s occurring at a time where there is more free time than usual.  It’s hard for him to understand why this interest is being limited in a way I never had to do in the past.  He’s also very resistant to me increasing expectations or encroaching on what would normally be considered free time.  Just a mess all around.

Some of this is the growing pains of having a more mature kid with more mature interests--his expectations are being recalibrated in his own head.

My son is this way every time there is a developmental change or a routine change--it's like the terms of negotiation start from some point eclectic to him. Sometimes he'll choose to recycle rules from another activity (sometimes appropriately, sometimes rigidly), but other times, he'll renegotiate a bunch of points, and we can't really tell if he's using a previous experience as a blueprint at all. We have to kind of anticipate it, talk about our expectations before it happens, and then just wait and see. But usually something hits the fan, and then we all have to talk out the boundaries around the new activity. (This happens with schoolwork too--new year, new course, etc., and he's renegotiating parameters for what it means to be a good student, lol!) Sometimes he bases his expectations on things we've said that aren't really relevant, but he thought they were. It's messy. 

Depending on what level of support he needs, it could mean that you have to set expectations very clearly, or it could mean that you have to wait for him to kind of realize this is causing problems and work with it as it arises.

It's never easy, and it's not always going to be about tech! 

Generally speaking, free time is always...interesting. It's free, but it's only free if he can regulate. He has learned to largely create his own structure and to realize when things are going well or not at almost 16. Much of time, you'd never know he struggles in this area at all; we don't have to impose a lot of external regulation now, and he can talk about these things pretty well. 

[WoolC]

4 hours ago, kbutton said:

It's a balancing act, sigh. From the rest of your posts, you're in a spot where there are a lot of variables making this not easy to parse out. I like what Peter Pan is telling you though--anxiety needs its own tools.

So, I think it's good to listen to adults on the spectrum, but I don't know how easy it is to match up the needs of a person writing a blog post to your own child, KWIM? Other times, I think of all the tools available now that were not as refined or not available at all that kids respond well to now, and I wonder if that is going to change the trajectory--sometimes I think the specifics of what is beneficial will change while the underlying "how" and "why" you select the tools you use might be the same. IDK for sure. Anyway, we found that if something seemed like it was making my son less regulated, we regulated that activity. He had other things to choose from, and those things were beneficial. Sometimes we just waited on activity until we felt like he had enough evidence of regulation in other ways that we could let him do it, if that makes sense. 

This instance is hard because of the timing and the activity itself is more than play. 

Some of this is the growing pains of having a more mature kid with more mature interests--his expectations are being recalibrated in his own head.

My son is this way every time there is a developmental change or a routine change--it's like the terms of negotiation start from some point eclectic to him. Sometimes he'll choose to recycle rules from another activity (sometimes appropriately, sometimes rigidly), but other times, he'll renegotiate a bunch of points, and we can't really tell if he's using a previous experience as a blueprint at all. We have to kind of anticipate it, talk about our expectations before it happens, and then just wait and see. But usually something hits the fan, and then we all have to talk out the boundaries around the new activity. (This happens with schoolwork too--new year, new course, etc., and he's renegotiating parameters for what it means to be a good student, lol!) Sometimes he bases his expectations on things we've said that aren't really relevant, but he thought they were. It's messy. 

Depending on what level of support he needs, it could mean that you have to set expectations very clearly, or it could mean that you have to wait for him to kind of realize this is causing problems and work with it as it arises.

It's never easy, and it's not always going to be about tech! 

Generally speaking, free time is always...interesting. It's free, but it's only free if he can regulate. He has learned to largely create his own structure and to realize when things are going well or not at almost 16. Much of time, you'd never know he struggles in this area at all; we don't have to impose a lot of external regulation now, and he can talk about these things pretty well. 

Your description of your son definitely sounds like some of the negotiating that’s been going on here.  Here it seems like the first day or two is chaos and each day gets a bit better as we adjust to one another’s expectations and make better plans.  
 

Today was much better, he built fractals with LEGO early this morning, put in a solid school day with me, and played outside for awhile this afternoon.  He ended up not using all of his allotted time to code, so looks like he’s coming around to balance.  We started a new CBT program (Camp Cope-A-Lot) online to try to address the anxiety better while we work on getting meds in place.  He was pretty engaged with it.

I finally got in touch with a human being today at our local clinic and got paperwork sent in.  We’ll be having a telehealth appointment later this week.

 

[PeterPan]

30 minutes ago, WoolC said:

he built fractals with LEGO early this morning,

I wanna see pictures!!!! This sounds awesome!!! 

I had not thought to do that with legos but now I'm going to have to. 

31 minutes ago, WoolC said:

a new CBT program (Camp Cope-A-Lot)

Interesting. Is this going to show up if I google it. Actually what we need now is a "why you give a rip about people" program, haha. Ds has been so disconnected from using his social skills with kids that he's apathetic about what his therapists are trying to get him to do. 

[PeterPan]

32 minutes ago, WoolC said:

I finally got in touch with a human being today at our local clinic and got paperwork sent in.  We’ll be having a telehealth appointment later this week.

Oh that's exciting!!!!! That's fast. I'm so glad for you.

[WoolC]

40 minutes ago, PeterPan said:

I wanna see pictures!!!! This sounds awesome!!! 

I had not thought to do that with legos but now I'm going to have to. 

Interesting. Is this going to show up if I google it. Actually what we need now is a "why you give a rip about people" program, haha. Ds has been so disconnected from using his social skills with kids that he's apathetic about what his therapists are trying to get him to do. 

https://www.copingcatparents.com/Camp_Cope_A_Lot
I learned about it in an article on evidence based methods for lowering anxiety in kids with autism.  No idea if ds will actually apply the info but he did watch with attention and discussed the little workbook part so we’ll see.

 

[StaceyKate]

Hi y’all, first time posting but wow this post is super timely for our ds 10.  I really appreciate the compassion and wisdom shown on the boards I’ve read so far.  A little background, our ds, ASD, is being homeschooled for the first time by me and school is going very well ( I was an educator so fun for me).   However, anxiety is unlike we have ever experienced.  The OCD behaviors are so difficult to watch and He is spiraling in to a very negative space.  The first month of being at home was some of the best times we have ever had as a family and Ds and dd (8) spent hours daily building imaginary worlds with Playmobil and legos.  They are best friends but the reciprocal interaction we were seeing was so encouraging.  Hit the two week mark and multiple meltdowns all day over making sure these cities were perfectly in place and if something is out of place or his sister tired of answering repeated questions about the details of play then immediate explosive behavior like we haven’t seen since he was a toddler.  Every night for 35 nights he has been waking between 2-3 am and coming to get me scared to death.  Never had one issue with sleeping in his life.  We haven’t gone the medication route yet, we’ve focused on therapy of many kinds...speech, OT, ABA, social skills,CBT and more natural methods of addressing OCD/anxiety.  BTW..we have done genetics testing and our son also can not have a methyl donor med.  Now, when it’s imperative that the above are not working I’ve been at a loss as to where to start to get him the help he needs.  Ped doesn’t feel comfortable prescribing and no referrals for a psych pro that she really likes,  parents in our area have no real positive endorsements of mental health pros and developmental ped no longer prescribes medicine.  We tried one parent referral a few months ago and the psychologist was a bad fit for our sensitive guy and did more harm than good.  I hate to just throw a dart at a google search and hope for the best.  Anyway, thank you for reading this.  If anyone has advice on first steps to getting help I would so appreciate it.  Feeling as overwhelmed as our little guy.

[PeterPan]

3 hours ago, StaceyKate said:

BTW..we have done genetics testing and our son also can not have a methyl donor med.

Did you look at TPH2? That's the conversion of tryptophan to 5HTP. So if that's glitched, then you can take a time release 5HTP. *might* pull his anxiety down enough to get him into the tolerable range. 5HTP is the precursor to serotonin and melatonin. 

Did you do anything else as a result of your genetics testing? Are you taking other things? Vitamin D?

3 hours ago, StaceyKate said:

the psychologist was a bad fit for our sensitive guy and did more harm than good.

Yeah, I'm with you that you don't talk out a chemistry problem. Straight COMT defects with no MTHFR are UGLY. I have both, and I feel my ability to modulate it, like there's sort of a yin and yang, both happening. But my ds doesn't have that MTHFR defect and it's just all one direction. It's so much more extreme. I think *someday* or hope someday he'll have enough cognitive and self-awareness to be able to apply self control strategies on top of it. But for right now, he just isn't there. 

Ok, so I'm not a doctor, so I'll say things I don't know, the questions I myself have. I *don't know* what the anxiety med options are that do not raise dopamine. Buspar is not a methyl donor, but it does raise dopamine which increases aggression. Wellbutrin raises dopamine. So it's not like a pat thing, kwim? I don't know all the meds. I *suspect* that in order for my ds to have a longterm anxiety med he would also have to have a mood stabilizer, a med meant to tamp down dopamine. That's what I *suspect*. Not like I'm putting him on a benzodiazapene, kwim? And someone (a pdoc) actually suggested benzos to my dd. The whole process just, I don't know. I'm just saying I don't know what the options are that would work alone, not raise dopamine, and not be addictive. So then if it can't be done, if the milder meds are all gonna raise dopamine, then that's two meds.

The other thing I'm being told is parents get that balance right, puberty hits, and it's a mess all over again. Sigh. That's what I'm being told.

So I will tell you that buspar + niacin is enough to tamp down the aggression for ds. If you do enough things that slurp methyls, you pull down the methyls so much the dopamine goes down. So it's not that buspar is a methyl donor but that I'm giving something also to pull down the dopamine. And I'm NOT saying it's perfect. I'm just saying it's short acting, not something that has to be a long commitment, something where we're choosing to monitor the side effects because the good is there too. We're *making it work* because I really had to have something immediately. That OCD type response of EXTREME lining up and stress and trying to get the world to calm down was in some ways more dangerous than just a you're grumpy and we administer niacin, kwim? It was really bad.

3 hours ago, StaceyKate said:

homeschooled for the first time by me and school is going very well ( I was an educator so fun for me)

I love that you're having fun! How high is your structure? Are you using visual supports? Is there any possibility that this increase stress is also connected to the schooling changes and missing his STRUCTURES and things he was used to? School is SO high structure, which you already know. It's very challenging, energy draining, in a homeschool setting to create that level of structure and herd effect. If you're doing it, I'd love to hear what your methods are just because I'm always trying to learn and find things I can glean. 

I'm saying structure, and yet increasing *demands* when they're highly stressed is hard too. But still, it's something to think about. Structure, predictability decreases stress. Maybe you can get some improvement, say 20% improvement, across enough things that you can get them to add up. Like something for tamping methyls down for the irritability plus a predictability/structure bump plus some sensory plus some interoception work. 

And I'm also wondering, again this is just because he was in school so you weren't seeing it, whether the structure of school, the high predictability, the lack of choice, the shut up and go along with the plan, was sort of covering up for his methyls being consistently a little high, kwim? Like maybe he was grumpy there too, but it was dealt with by that high structure system where it was harder to show it. What do you think? Or had you already done a lot to get the methyls under control and he was very chilled?

3 hours ago, StaceyKate said:

 Hit the two week mark and multiple meltdowns all day

What changed? Did something change on your end or in the amount of news he was hearing or how your lives were affected?

And how old is he? Do you think something clicked in him, like grief or realizing this would go on longer or a transition from holiday to if this is permanent I have feelings about it? 

For my ds, he'll have frustrations he doesn't/can't voice. Then he'll be stressed and we have to figure out what was bothering him and help him problem solve. Like he'll move all the things for his comfort closet out to another room and then be stressed because his comfort closet is bare. I mean, it sounds silly but that's the level he functions at. So sometimes it takes sleuthing to figure out what got disrupted in his world. And it isn't all chemical, kwim? It could be relationships he's missing. It could be a space or strategy he is used to using that got disrupted. Anything where he has a problem and can't quite figure it out and needs help to problem solve. So then I end up figuring out what changed and putting the comfort closet back together, helping him connect with people he's missing, etc.

GRIEF is a hard one here. That's an emotion, so the emotional awareness and interoception deficits make it harder for him to realize he's grieving. So they need both help to know what they're feeling *and* help to manage/express/let it go. My ds lost his grandma, so that was a big grief. But your ds may be missing school, his friends. Nuts, he might miss something really odd about school like the fish tank or the lunches.

I also think my ds has had a shift, along with us, during the last few weeks. I'm not sure if it's information access and overhearing stuff or just that he keeps growing, kwim? Over a couple months, our kids change and how they understand things changes. So my ds overhears things and how he's processing that is changing. It's just what I was noticing last night. It means how we need to talk about it is changing.

3 hours ago, StaceyKate said:

more natural methods of addressing OCD/anxiety.

I'm not sure that it's evidence based to say CBT alone for OCT + ASD. https://www.scientificamerican.com/article/untangling-the-ties-between-autism-and-obsessive-compulsive-disorder1/ They mention a book there about modified CBT for ASD. I think the issue is partly interoception. It's really, really hard to apply cognitive strategies because they start with this assumption that the people can be aware of it if they try. Like I was looking at that campcoping cbt program, and their lesson on physiologic symptoms was SO BRIEF. It was cute, but that was just so brief.

Have you looked into interoception? https://www.kelly-mahler.com/what-is-interoception/  I'm not sure I'm saying now is the time to work on it. I guess go with your gut on that. And I'm not saying it's going to remove anxiety or that you can bodyscan it away. But if you want him to be able to use talk therapies and CBT, improving his connection to his body and his own awareness will help. Even Zones of Reg, same gig. Kids who fail Zones of Reg can finally apply it once they get interoception work. 

The nice thing is, if you think it's timely and he could handle it right now, you can go through the entire basic curriculum in 8 weeks. For real. Even if you slow it down, that's 16 weeks. But the studies have all been 8 weeks. And you have a pair to work with, which is so nice. And it doesn't sound like he has severe language issues, which will make it easier. 

So working on interoception for 8 weeks might be something to do while you're waiting for your access to the mental health services. It would give him a better foundation to interact with you if you're going to start meds. And going through the process might help him find some strategies that work for him at least partially.

https://www.arcvic.org.au/34-resources/402-vagus-nerve-exercises  Have you tried vagus nerve exercises? In addition to body scans/mindfulness and interoception work, vagus nerve exercises would be evidence based. They might get you another 30%. Like if I do a farmer carry of significant weight + humming to stimulate the vagus nerve + working with a pulse oximeter to feel my heart beat and body scan + ... I start to add up a lot of smaller percents that get me somewhere, kwim?

Also, I don't know about you, but I also flat out TELL my ds if something is OCD, stuck thinking, or repetitive. I'm very b&w. And I think it's an interoception/self-awareness thing not to REALIZE you're getting stuck or why you're doing something. I think it's ok and not immoral to say wow your OCD is really flaring up because you're stressed, that's very OCD, let's help get you unstuck. Like just flat TELL him. You can tell him what physical symptoms you're seeing that let you know what affective emotion he's dealing with. 

There are books on OCD. I haven't used them yet. It's not so much that my ds needs to be labeled with that, because most of the year that is *not* where he functions. But I think it's helpful to realize wow when I'm really stressed my ASD is gonna flare up with this symptom and I can see that symptom happening and decide what to do about it. And there are picture books, Julia Child books, OCD monster books, that kind of thing. If you have access to them or could get them on digital, it might be another tool to bump awareness.

I don't think you talk through high dopamine, high methyls. If he's irritable, that has to be pulled down chemically because it's a chemistry problem. 

I'm sorry it's hard. Right there with you. Welcome to the boards btw. 

Edited April 30, 2020 by PeterPan

[PeterPan]

3 hours ago, StaceyKate said:

our ds 10.

Totally oddball little suggestion, but can he get outside? Sun will help pull down those methyls by upping his D. My dh got my ds a smaller, battery powered weedwhacker around that age. So if your grass is growing, maybe your ds could go weedwhack? Chores are another way to build in structure. And of course physical activity can leave him tired and with less time to be lining things up and grumpy. Routine, boring, repetitive, predictable chores are good. 

Edited April 30, 2020 by PeterPan

[StaceyKate]

Wow..@ Peter Pan..I can not thank you enough for all of your well thought out advice.  Thank you for taking the time to share..so helpful.  For one thing, I underestimated how much this change in his world would affect him.  He had been stressed prior to quarantine at school because of the state mandated testing that he would be taking for the first time.  So I guess the success of the first month had me patting myself on the back for the great learning environment I was providing..ha!...and then Bam..back down to reality.  So typical with ASD right?  Asking what has changed was a really great question and one I had been asking myself.  One very big thing is that we told him he has ASD a few weeks ago.  We had talked around this for a long time but we had not used the word autism, mainly because we wanted him to have the maturity to understand and share with others.  Our son loves to talk, thankfully, and sure enough he asked me tonight, “ so can I share with my class tomorrow on our Zoom call that I have Autism?”😂.  He’s really been processing the info we gave him so that’s one thing.  The other big thing was this huge city that DS and DD had created in the playroom had turned from being fun to him having to, in his mind, memorize where everything is and make sure it was all in the right position.  We fixed that by cleaning most of it up and reducing the visual clutter.  
 

I’m not sure yet how to cut and paste here yet to reference your specific questions, but I will try to answer a few since your feedback has been invaluable,  We have used the genetic testing to help direct the biomedical and homeopathic treatments we’ve used for DS.  We’ve used 5 HTP in the past..just looked and DS does not have TPH2 mutation..probably why I didn’t remember it and why 5 HTP was not really a big help for us.  He does have homozygous mutations on one COMT and heterozygous for all the rest of the COMT genes tested.  He’s heterozygous on MTHFR and homozygous with MTHFS and MTRR.  So with those genetics we’ve had a really difficult time balancing between taming the OCD ish behavior without raising aggression.  It’s why we haven’t gone down the psychotropic route yet.  Interesting that you mentioned buspar, this is what his developmental pediatrician recommended when I spoke with him but he won’t prescribe.  Would you mind telling me how you feel the buspar has helped with anxiety?  
 

Thank you for the reminders about interoception and vagus nerve exercises.  Another change has been the lack of sports.  For our son, once he really became in to playing on sports teams his need for specific OT exercises went way down.  He had intensive OT for 5 years and one season of basketball was like a year of OT..really amazing But now sports is cancelled and he needs more specific help so I need to get on that for sure.  Both resources look great..thank you.  

So funny about the weed eater..that is def a fave over here too and my floors are usually clean because of my DS with the vacuum..silver linings right?  
 

Being outside is so important.  Love to hear your thoughts as I really am just winging it here with school.  Our district is doing fairly intensive distance learning, especially for a child with learning differences.  If we keep a somewhat normal “school schedule” of 9-4, then we are able to have Fridays free.  What are your thoughts on more intensive 4 day a week schedule versus more relaxed 5 day a week?  
 

In terms of structure, our son obviously thrives on it, but after a school day often had a sensory meltdown until we figured out what worked.  He holds all the behaviors in and then by the end of the school day it can be too much.  For homeschool, I’ve been filling out one of those paper chore charts with all the assignments for the week and then giving him control as to which 4 he does each day with a 20 min break between each assignment.  That’s been helpful and both kids wanted recess and lunch at the same time it was at school and we’ve tried to stick to that.  I’m not a super structured person naturally though so I’m sure he’s missing the concrete, black and white world of school.

I just wanted to thank you again for taking the time to help.  
  

[PeterPan]

5 hours ago, StaceyKate said:

He had been stressed prior to quarantine at school because of the state mandated testing that he would be taking for the first time.  So I guess the success of the first month had me patting myself on the back for the great learning environment I was providing..ha!...and then Bam..back down to reality.

Aww, that's a lot of transition! Be kind to yourself! Do you think that he was in kind of a honeymooon phase and that as he was doing well you increased demands and started to get the behaviors? With my ds, we've been increase therapy hours because we have easy access right now via tele. So on top of the stress of the virus situation, I think he's also dealing with an *extinction burst* due to increased/changed demands. We've gone from 2 hours of therapy a week to 6-8! So yes, I'm with you that it's always autism, always has these complex factors to sort through. And you might be doing nothing wrong. Sometimes it's just that hard to sort through. 

5 hours ago, StaceyKate said:

 One very big thing is that we told him he has ASD a few weeks ago.  We had talked around this for a long time but we had not used the word autism, mainly because we wanted him to have the maturity to understand and share with others.  Our son loves to talk, thankfully, and sure enough he asked me tonight, “ so can I share with my class tomorrow on our Zoom call that I have Autism?”😂.  He’s really been processing the info we gave him so that’s one thing.

Oh that's interesting. And I'm with you that it's a lot to process. Not to be too personal, but when I got my diagnosis there were some stages. Many people go through sort of a worsening, as they become aware of things and have to process. What is his support level? My ds' support level is 2, and we're just very quiet with him about it. We use the A word and he will use it about himself, but we don't talk about it a lot. I LOVE that your ds finds the term helpful and feels comfortable sharing about himself. That's a big deal. Even many parents don't feel comfortable with diagnoses for their kids. And I think it's right to respect his feelings on this, on how he wants to be identified in public, when/where he feels it's helpful to share, etc. That's wonderful.

5 hours ago, StaceyKate said:

The other big thing was this huge city that DS and DD had created in the playroom had turned from being fun to him having to, in his mind, memorize where everything is and make sure it was all in the right position.  We fixed that by cleaning most of it up and reducing the visual clutter.  

Play, especially the really creative stuff, is so hard! They want it to be PERMANENT and then the anxiety kicks in. One strategy I heard was to take pictures of whatever the thing is, so you can say you love it and will keep it forever that way and that it's time to clean up to make the next thing. Another thing I did was to get a Roomba. You can laugh, but then it's like sorry, I have to run the Roomba so it has to be picked up.  I have asthma, so I get away with that one. 

And yes on the reducing visual clutter! I swear, I think sometimes my ds gets stressed and doesn't know why and it's that visual clutter. It happens to me too. So like my dd's decorating style is very cluttered. But me, I make rooms and do things that are literally monochromatic or just two colors. Very little on the floor, just a few things. If there are more and it gets very busy, it's much more stressful for me. It's like I'm processing everything all the time. Well actually, I am. Like when I see people, it's like seeing them new every time. They never look the same, because I was looking at some detail (that might change) rather than their whole. So I might be looking at the collar of their shirt or the way their makeup is on their chin. Even with my own kids, they literally look different each time. I'll see my dd after she's gone a week to visit her grandparents and I'm literally starting all over with a stranger.

So yes, if you go in a really good autism school, they're going to have very streamlined, tidy, calm spaces. The colors will be calming, the walls not visually stimulating. I have my ds' office in a blue room with everything shades of blue with just pops of green. So light blue walls, blue bins, dark blue curtains, etc. and lime green accents on the drawers and the floor cushions/seating. You walk in and your whole vibe goes down down and calm calm. It's my project to tidy the room again. It got a little crazy. But spaces that are in use have that happen, lol. It's just a constant process. Apparently I'm not naturally tidy. 

5 hours ago, StaceyKate said:

We’ve used 5 HTP in the past..just looked and DS does not have TPH2 mutation..probably why I didn’t remember it and why 5 HTP was not really a big help for us.

Oh that's really interesting!! And yeah, I think that's what the studies are saying, that if you don't have a defect, don't have low 5HTP, you don't need to be taking it. That wasn't the exact study but a conclusion I drew from a study I read. It isn't something that is just universally useful. I'm with you that it's best when you have the defect and the indication.

I want to unpack the rest of what you wrote, but I have to do something. Back later.

[WoolC]

Updating to say clinic ended up pushing us out another week so we saw our primary doctor this morning and he’s starting ds on lowest possible dose fluoxetine.  Feel free to share encouragement or scary stuff that I should be watching out for.  I seriously don’t think I’ve ever been this anxious in my entire life.  Say a prayer for us over this weekend if you’re the praying type!

[PeterPan]

6 minutes ago, WoolC said:

so we saw our primary doctor this morning and he’s starting ds on

I hope it goes well! So I can tell you I know someone with COMT defects who's tried several SSRIs so far. That person *has* had reactions to the SSRIs, but none have been *dangerous*. And they kind of ramped up slowly. So I'm with you on it being nerve wracking with not knowing what will happen. But I think if they start slowly and you make data, you'll see and take care of it. And maybe with his mix it will be good! It could happen. And if it's not, then the negative parts hopefully will ramp up slowly enough that you'll see them and respond. 

And, fwiw, that person's reactions, the negative ones, have been either becoming unusually energized or unusually slow, like shutting down. So if you think you're seeing something, it's not your imagination. But the meds ramp up so slowly that it may give you some time to see it coming. And we'll hope for the best! 

[PeterPan]

7 hours ago, StaceyKate said:

But now sports is cancelled and he needs more specific help so I need to get on that for sure.

Oh my. Do you have a treadmill or something he can do? 

https://healthykidsrunningseries.org/healthy-families/mile-training-plan/  a plan

https://content.nike.com/content/dam/one-nike/en_lu/SP16/Kids/PDF/Kids_Ready_Set_Go_Running_Guide.pdf  and Nike has bodyscan/feedback forms

Also I've been doing farmer carries with my ds. I got some dumbbells when everything was shutting down. He can carry 10-15 pounds in each hand pretty safely. Just a quick and dirty way to get that heavy input.

7 hours ago, StaceyKate said:

So funny about the weed eater..that is def a fave over here too and my floors are usually clean because of my DS with the vacuum..silver linings right?  

Oh that's awesome.  Maybe we should team ds to vacuum!!! I hadn't thought of that. Dh loves to do it. The noise gives me headaches so I have to be very careful. It's why I roomba. But yeah that certainly would open up some potential, hmm. 

7 hours ago, StaceyKate said:

Our district is doing fairly intensive distance learning, especially for a child with learning differences.  If we keep a somewhat normal “school schedule” of 9-4, then we are able to have Fridays free.  What are your thoughts on more intensive 4 day a week schedule versus more relaxed 5 day a week?  

So your ds needs structure for Friday but the school is not providing it. What about a project plan for that day? Or maybe a series of projects. We're doing the LakeShore Learning Chain Reactions kit right now and it's terrific. Math Mysteries from Scholastic are great. I just printed off this reading mysteries book https://www.carsondellosa.com/0742427234-eb--reading-comprehension-mysteries-resource-book-grade-3-ebook-0742427234-eb/ that would be really conducive to doing once a week. Timberdoodle has logic puzzles and their paint museum 4 painting pack. 

So you could hit STEM, art, reading, math with each of these project type things on Friday. If he's cool with how the other days are going down, just change what's not working.

Also have you looked at sewing? https://www.amazon.com/Sewing-School-®-Projects-Kids/dp/1603425780/ref=sr_1_2?dchild=1&keywords=sewing+school&qid=1588348368&sr=8-2  My ds is enjoying this. I made his sewing box a camo pencil case, haha.

Or a totally different direction. I've been watching old movies with my ds. We've done the Marx Bros, Fred Astaire/Ginger Rogers. I want to do Cary Grant movies next, especially the comedies.   Movies are a great way to work on narrative language, inferences, body language, etc. etc. 

7 hours ago, StaceyKate said:

Being outside is so important.

I found a pdf from the DNR for our state with common birds. Maybe some bird watching or nature drawing? Could be done from a window or outside.

 

[PeterPan]

7 hours ago, StaceyKate said:

We’ve used 5 HTP in the past..just looked and DS does not have TPH2 mutation..probably why I didn’t remember it and why 5 HTP was not really a big help for us.

Sounds spot on to me. The studies I read seemed to indicate, like you're saying, if you don't have the defect don't bother taking it.

7 hours ago, StaceyKate said:

He does have homozygous mutations on one COMT and heterozygous for all the rest of the COMT genes tested.

Yeah, that can make a kid grumpy. How was his VDR =vitamin D receptor?

The other thing I don't think 23andme runs is MAO A. I don't even know what to do with it, but I found it in my own labs and think it's connected to the GAD. What testing company did you use for your genetics? I had mine done through a university study, so they ran different things from 23andme. There's definitely more we could be doing or looking at. Was a practitioner helping you? That's something that would interest me if I found the right person.

7 hours ago, StaceyKate said:

He’s heterozygous on MTHFR and homozygous with MTHFS and MTRR.

Ok your one (or 3k haha) steps ahead of me on this. I don't even KNOW about MTHFS. And what do you actually *do* with the MTRR results? I see it tripping in ours, and I've never figured out what it impacts or what we could do with it.

7 hours ago, StaceyKate said:

So with those genetics we’ve had a really difficult time balancing between taming the OCD ish behavior without raising aggression.

So have you had issues with aggression or you suspect you would? I've always assumed my ds' aggression was the combo of really whacked social thinking (how he thinks the world should run) and the defects that are not pulling down methyls where they should be (TPH2, VDR, etc.) and the language (making it harder to use language to problem solve, language shutting down). I know people without ASD who have even more boxes ticked genetically who can hold their emotions in check just fine usually. They might get a little testy, but never on this level. So I guess I'm kinda wondering why the aggression would go so high if the things that should pull down methyls are pulling them down. I've always assumed the methyls go up, the dopamine goes up.

And yeah, it does seem like many of the things for anxiety are upping dopamine along the way, upping aggression. So you end up needing a combo approach. I've been trying to keep the dopamine down by artificially pulling the methyls down with niacin. But I agree, it's an unstable long term solution.

Just as a total aside, have you looked at foods and medications he might be taking that are methyl donors? Caffeine, orange juice, benadryl... So even mild sources of caffeine, like chocolate, are an issue here. I let him have it but I have to be SO careful. In fact, I just realized I forgot I let him have chocolate pudding last night. I put it in a really small dish and filled it half with whipped cream. LOL

[StaceyKate]

@ WoolC...Will def keep you and your family in my prayers.  I’m hoping this helps and you can encourage us all with your success story.

@PeterPan...love hearing your adult perspective on some of the challenges of ASD.  I have ADHD and I know they are both brain conditions but our needs are so different that I have to constantly remind myself to see things through ds’ eyes.  
 

I think the COMT mutations def exacerbate the mood swings, etc.  Not sure about VDR receptor but Vitamin D levels are low when we’ve tested so we supplement.  We did 23 and me and saw a geneticist.  One practitioner recommended one and another wanted the other.  You can run 23 & me results through a site called Nutrahacker for a fee and it will show all the mutations that you have and generally what they control.  I’m not sure if you can run a different genetic test through the site but def worth checking out as it simplifies things.  Our son’s homeopathic dr explained the nutrahacker results but it’s pretty easy to research it on your own.  It helped to know what to really focus on and what didn’t matter as much.  It can be so overwhelming..at least for me.  
 

MTHFS and MTRR are Methylation genes and just like MTHFR for all intents and purposes.  We’ve used 5 MTHF or Folinic acid and hydroxy  b12 to address these.  Same issues though, helps with speech, brain power and increases hyperactivity, OCD so we always have something else on board to balance.  Sounds good in theory but we’ve found it difficult to balance.

Our son isn’t physically aggressive towards others but he is intense and can often be verbally aggressive towards his sister.  Interesting ideas about your son’s aggression.  Probably a combo of need for control, brain wiring and the genetic factors.  Just like you said, my mutations were more pronounced than ds and I don’t have the problem with emotional regulation but I think it’s the combo of mutations plus environmental factors maybe.  
 

So the methyl donors thing has always been a bit confusing to me because of conflicting information we’ve received.  Where did you find the info on foods to avoid?  I would love to look into that again.  
 

Our son was diagnosed right before they began adding support levels.  I would think he is between 1-2.  He is in a regular public school classroom but he needs quite a bit of academic help in that setting.  It’s quite nerve wracking to give him the control over what to do with his diagnosis.  We don’t want others to react negatively to him telling them and to treat him differently but it felt like time.  He was asking lots of questions about why he’s the way he is and his sister is not.  
 

Love your perspective on visual clutter even with people.  Such a helpful perspective because sometimes I just want to scream, “why are you focused on that seemingly unimportant detail.  Move on!”😂
 

[PeterPan]

5 hours ago, StaceyKate said:

We did 23 and me and saw a geneticist.

So was the geneticist helpful? I've sort of had the impression that (at least in hospitals) they're very focused on syndromes, targeted $$ testing, etc. But yeah, if a geneticist is focusing on using genetics to improve mental health treatment, I'm all in, mercy. I could look if they could be helpful.

I'll look into that Nutrahacker. I've done a couple other sides, but if it adds something that will be interesting.

5 hours ago, StaceyKate said:

Where did you find the info on foods to avoid?

I usually just google if I notice a pattern. So he was having issues every time he'd go to his aunt's and get pop, and it turned out the pop had caffeine. I would drink tea when driving (to stay awake) and notice symptoms. So I'm not freakish about it. It's just that a few foods are really, really noticeable. I like orange juice, but I get headaches with it. I knew this for years and didn't know why. Then one time I was like I wonder if I could cut that headache with niacin, and boom it worked. Turns out oranges are crazy methyl donors. My ds will sit there and eat 2-3 in a day and be completely unworkable. So we saw patterns. Oranges, caffeine, benadryl are super common high methyl donors. 

Conversely, if your methyls are low for whatever reason, have a methyl donor. So if I am low, I can go have 1/4 cup orange juice and balance out.

 

[StaceyKate]

The geneticist was not super helpful except to rule out syndromes, etc.  More helpful was to have a physician who is knowledgeable about the roles that genetics can play and help us figure out how the info can practically help.  
The methyl donor and foods is so interesting.  How did I miss this?  I’m researching right now..

thank you

[StaceyKate]

Also, how do you know when your methyl donors are low versus high.. how do you experience it?  Thanks.. good stuff to think about...

[PeterPan]

2 hours ago, StaceyKate said:

Also, how do you know when your methyl donors are low versus high.. how do you experience it?  Thanks.. good stuff to think about...

Irritability, headaches. 

I'm mixed, MTHFR + COMT, and now that I take stuff for it I tend to run on the low side I think. So then if I take something that is a dramatic methyl source (something that would make my ds really aggressive and hard to work with because he's straight with no MTHFR to pull it down), for me it will just be grouchy and headachy. 

Fwiw, and this is just a total aside, but it's not really linear like oh take niacin and the caffeine problems get negated. It can *help* if I take the niacin early, but I still have to be careful not to be grouchy the next day. So for my ds with no MTHFR to stabilize him, that means even if I give niacin the effect of the caffeine/methyls will still be pretty significant. So I gave him chocolate pudding, but he was still a grouch ball a lot of today, even with niacin. I can't make it perfect. I try, but it might not be perfect.

[8filltheheart]

I didn't read all of the replies, but my Aspie has always been far more aggitated after screen time.  He knows how much it impacts him.  He has no cable, no internet in his apt and has his data turned off to his phone.  He limits himself on the amt of time he will play on the xbox.  Everything about his ability to function "off the screen" deteriorates with screen time. We didn't allow him to have access to any video games in our home until he turned 18,

[PeterPan]

1 hour ago, 8FillTheHeart said:

my Aspie has always been far more aggitated after screen time. 

I had never thought about this, but is it possible there's a literal chemical mechanism there? The computer games are stimulating dopamine, and the dopamine too high results in aggression, irritability, etc. Like maybe people are literally seeing the chemistry happen?