Help me think through this (possible ASD)

[WoolC]

My 11 year old son was diagnosed ASD2 when he was 5 years old.  He has very obvious, core features of autism.

My 9 year old son  is adhd, sensory seeking, and has anxiety that expresses itself as explosive anger.  
 

We’ve run into mental health issues with both of the boys due to COVID shut downs and have started each of them with a psychiatrist, medication trials (Horrific results so far, by the way) and getting plugged into appropriate therapies.  My 9 year old’s psych is now pursuing full autism evals.  I can see the red flags that she’s picking up on, however my two sons couldn’t be more different and I’m having a hard time seeing that he could really be on the spectrum.  He most certainly has theory of mind.  When we’re trying to explain TOM concepts to my oldest son, ds9 will chime in and say, “Yeah, it’s just like...” and give an excellent example of whatever concept we’re trying to teach.  He doesn’t have issues with language, narration, etc. in fact I’d say he’s gifted in this area.  We have reciprocal conversations, he’s very in tune and empathetic to others emotions.  He can be a bit socially awkward in new situations but gets along and joins in fine in time.  His red flags are very occasional stimming, sensory issues, wearing clothing that’s inappropriate to the season, gets stuck on ideas occasionally, and emotional regulation issues.  I sometimes think some of his quirkiness has been learned from his brother.

I know it’s impossible to get a full picture from a brief paragraph on the internet, but would you say we’re pushing into ASD territory here, or does the ADHD, sensory, anxiety combo cover it?  This isn’t the first time we’ve had a doctor mention the possibility, but it’s hard for me to see how I could miss it when I’ve been reading about autism for 6 years with older ds.  

 

 

[Lawyer&Mom]

Chiming in here as an Autistic adult closer to your younger son than your older son.

Just because you understand the ideas of Theory of Mind and can explain them on an intellectual level doesn’t mean you can apply them on the fly in the real world.  (But it does make it harder to get a diagnosis!)  I often help myself to food at dinner and forget to serve my kids, even though I totally understand that they like to eat too!  Kids that fly under the radar with Autism face different expectations and therefore different challenges than more obviously Autistic kids, but can still really benefit from  diagnosis and supports.

You can be verbally gifted and still have language issues.  How is he in communicating with his peers?  My daughter is fine at having conversations with familiar adults.  But watching her on Zoom meetings with her peers has made her pragmatic speech deficits *so* apparent.  But she’s seven and reading at a high school level, so you wouldn’t leap to considering language deficits if you didn’t know she’s Autistic.

He is only 9.  Middle school could make his social differences more apparent.  Not to mention Executive Functioning...  I absolutely wouldn’t rule Autism out, just because his presentation is so different from his brother’s. 

[WoolC]

7 minutes ago, Lawyer&Mom said:

Chiming in here as an Autistic adult closer to your younger son than your older son.

Just because you understand the ideas of Theory of Mind and can explain them on an intellectual level doesn’t mean you can apply them on the fly in the real world.  (But it does make it harder to get a diagnosis!)  I often help myself to food at dinner and forget to serve my kids, even though I totally understand that they like to eat too!  Kids that fly under the radar with Autism face different expectations and therefore different challenges than more obviously Autistic kids, but can still really benefit from  diagnosis and supports.

You can be verbally gifted and still have language issues.  How is he in communicating with his peers?  My daughter is fine at having conversations with familiar adults.  But watching her on Zoom meetings with her peers has made her pragmatic speech deficits *so* apparent.  But she’s seven and reading at a high school level, so you wouldn’t leap to considering language deficits if you didn’t know she’s Autistic.

He is only 9.  Middle school could make his social differences more apparent.  Not to mention Executive Functioning...  I absolutely wouldn’t rule Autism out, just because his presentation is so different from his brother’s. 

This is really helpful, thank you!

I would definitely say that while he does show that he understands Theory of Mind he doesn’t necessarily apply it himself at times.  We also definitely see a difference in his speech with peers vs familiar adults.  In scouts with neurotypical public school peers his differences are apparent, but at homeschool sword fighting class with neurodiverse kids he fits right in and is very comfortable.  

We’re definitely not ruling Autism out, just trying to clear up my misunderstandings. I think too, that offering supports and scaffolding is just such a part of our family culture that I might not be aware of how much I’m already supporting ds9.
 

[Lecka]

Structure and demands are big watchwords with autism.

I have no idea what the difference between scouts and other class are, but these can make a big difference.

Are the expectations different between the two classes?

Social, following directions, environment (one better/worse for sensory) — it all makes a difference.  

[WoolC]

11 minutes ago, Lecka said:

Structure and demands are big watchwords with autism.

I have no idea what the difference between scouts and other class are, but these can make a big difference.

Are the expectations different between the two classes?

Social, following directions, environment (one better/worse for sensory) — it all makes a difference.  

Oh, he does fine with the expectations of both classes.  I was commenting more on social and speech interactions with the different peer groups.  
When the scout boys gather and talk amongst themselves, he’s more likely to hang back quietly, he seems to miss out on some of their social cues.  This could be chalked up to the fact that the other boys attend school together and have a common way of talking that ds just doesn’t have, or maybe more.  At our homeschool class there are plenty of autistic, adhd, sensory, and typical kids.  They’re a diverse group and ds is very comfortable with them.  He joins in conversations enthusiastically and doesn’t look any different than the other kids in that group.

[Lecka]

Just to commiserate, my daughter has gotten deeply into cats and Warrior cats by Erin Hunter, with lots of monologues and asking me to pretend to be a cat with her, and I just have no idea if this is going to last or if this is a cute phase or what.  Before coronavirus she liked Warrior cats but it was not nearly as “all the time” as it has gotten.  
 

For us, we are planning on the kids returning to traditional school next month and will see how she does then.  
 

Before coronavirus, she had one friend at school who also liked Warrior cats, and she had more interests.  

[Rosie_0801]

Autism is genetic, so if you've got one, you've probably got more. They're different kids, so the presentation will be different. My non-verbal, non-toilet trained, autistic son had more emotional intelligence at 5 than his barely discernible sister had until she was over 7.

[Lecka]

When my older son was that age, he was not interested in sports and could look that way, and I think it was as much about him not wanting to talk about sports as anything.  
 

Edit:  where if a group was talking about Minecraft, Star Wars, etc, he would be engaged and doing well.  

Edited July 30, 2020 by Lecka

[Lecka]

From what you mention as red flags it seems pretty light to me.  
 

I think they should explain it to you either way as evals are done.  
 

Sometimes there are things on evals that just don’t really show up in noticeable everyday situations.  
 

Are they saying the emotional regulation issues are directly related to autism in some way (from rigidity, black-or-white thinking, social understanding, or something like that).  I could see that.  If it’s meant to explain emotional regulation — I think that sounds good.  
 

I do think sometimes it is right to do evals to find out what they show, it isn’t a fore gone conclusion.  Maybe it is a time it’s appropriate to do the evals but it’s hard to say how they will turn out.  

[WoolC]

10 hours ago, Lecka said:

From what you mention as red flags it seems pretty light to me.  
 

I think they should explain it to you either way as evals are done.  
 

Sometimes there are things on evals that just don’t really show up in noticeable everyday situations.  
 

Are they saying the emotional regulation issues are directly related to autism in some way (from rigidity, black-or-white thinking, social understanding, or something like that).  I could see that.  If it’s meant to explain emotional regulation — I think that sounds good.  
 

I do think sometimes it is right to do evals to find out what they show, it isn’t a fore gone conclusion.  Maybe it is a time it’s appropriate to do the evals but it’s hard to say how they will turn out.  

Yes, the psychiatrist thinks that Autism might explain his explosive behaviors and sensory issues.  He has also had atypical adverse reactions to SSRIs, stimulant and non-stimulant adhd meds, which makes her think he may be Autistic.  She’s really trying to open the door to Abilify and Risperdal as far as FDA approval is concerned with an Autism diagnosis.  I’m not sure I’m comfortable going to those meds for him right now either way though.  

I’m really questioning this from a place of curiosity.  I’ve tried to accept each of my kids where they’re at and go from there.  The way I understand and support ds9 won’t really change as I’ve always tried to take his needs as an individual into account.  If the root is Autism vs adhd, sensory, and anxiety (which he will still have either way) we’ll continue to do what we need to do for him.  I do think having an Autism disgnosis would help extended family who tend to expect more of ds9, while they’re very understanding of ds11’s difficulties.

[Lecka]

It sounds like the right time to be trying to figure it out!  
 

I think many people have a hard time understanding kids who have less obvious problems.  We have a close relative who gets a poorer reception from some relatives, and a lot of it is he comes across like he “should” not have a hard time with various things.  It can be frustrating.  I can see how certain things are totally autism-related but a few relatives seem to insist on seeing them as conscious choices.  And these are people who are very patient with my own son, sigh!  I do speak up for my other relative whenever it happens to come up.  And many relatives do “get it.”  But for sure — for those of us who do “get it” I think being aware of the diagnosis (or really just being aware some things are related to autism and not “being difficult on purpose”) is very positive!  
 

No medication here, but I have been hearing about it since pre-school (from other parents etc).  I have gone from being horrified to having it be something where over time, as kids get older, more and more kids are taking medication (including Abilify and Risperdal) and sure seem to be doing fine to me.  

[PeterPan]

So part of what you can be describing is a diference between asd1 and 2. https://www.socialthinking.com/Articles?name=social-thinking-social-communication-profile  Here's an article to juice you.

I'm with you that it's extreme to say the med reactions (which are due to methylation defects and visible in the genetics) define autism. Could just as easily happen with schizpohrenia and other things, just saying. So comorbid, not diagnostic. And you can be on the spectrum and NOT have those methylation defects. Doesn't mean the med ideas are wrong, just that you're right that's not the dsm criteria for autism.

So if you want other meds, youre runnii ng genetics and good luck. It's very tricky. I'm there with you tring. Interestingly look at what abilify hits and the genetics of the 5htp (name is slipping my mind for gene sorry) defect. Overlaps. So idea right but sure you can find more options if want them. Just not saying it's easy.

So do both the asd eval and the mood treatment. ASD will be there after mood is treated, no rush

[PeterPan]

Have you run blood on vitaminD? b12?

[PeterPan]

The amount o 5Htp it is taking to stabilize my ds right now is astonishing. We use it to tamp down the upped dopamine with the buspar. Buspar is great otherwise, just ups dopamine and aggression. Niacin will pull down methyls but too much will drop serotoinin was well, making worse. 5htp is gold here and i think abilify is next cuz hits more pathways in same part of town

[WoolC]

38 minutes ago, PeterPan said:

Have you run blood on vitaminD? b12?

Yes, and we do supplement those.  We tried 5htp briefly in March but I don’t know that we ever got the dosage right.  We never saw any improvement.  We are having limited success for hyperactivity with guanfacine (tenex) but it’s far from where we need to be emotionally.

The elephant in the room is definitely bipolar at this point if it turns out he’s not Autistic, but our psychiatrist isn’t going there at this point with so many Autistic traits present.
 

[Terabith]

Really, you can figure out if your kid has ASD by going through the DSM criteria and going yes/ no to does he meet it.  It's really that simple.  

I mean, an evaluation might be necessary for therapy or funding purposes, but you can figure out the answer yourself.  

[PeterPan]

51 minutes ago, WoolC said:

The elephant in the room is definitely bipolar at this point if it turns out he’s not Autistic, but our psychiatrist isn’t going there at this point with so many Autistic traits present.

why quibble over name when the chemistry o the behavior is the same no matter what you call it. The only thing I've seen for autsim chemstry that is *close* to universale is oxytocin. The rest varies. So the aggression is chemistry? yes. The aggression is social thinking and difficulty taking perspective, being self aware, problem solvig? Well that is there, but without the chemistry solution you never tone it down enough that he CAN help himself with cognitive strategies.  So the chemistry is comorbid and does not define the ASD.

Research biopolar and methyls, bipolar and dopamine levels, sure. It's really irrelevant what you call it right now, because chemically theyre the SAME

[PeterPan]

6 minutes ago, Terabith said:

Really, you can figure out if your kid has ASD by going through the DSM criteria and going yes/ no to does he meet it.  It's really that simple.  

I mean, an evaluation might be necessary for therapy or funding purposes, but you can figure out the answer yourself.  

And further, getting the chemistry completely treated will make the ASD more apparent. The doc is seeing it but it;s so masked by the aggression and anxiety that the mom can't. My ds is GLARINGLY autistic wth his anxiety treated. He's so calm that the behaviors come out. 

[PeterPan]

1 hour ago, WoolC said:

dosage

With myself and my ds (similar chemistry, mine is more complex) I take the D up (aling with K2) until he gets insomnia and back off slightly. So for him right now that is 10k IU a day plus 4 capsules K2. That's summer, igher in winter. THEN with that in place I use a 12 hour (natrol) 5Htp and crank it up till he wakes up happy and is stable all day with morning/evening doses. I split his evening dose so 100mg (time release) at 5:30 (dinner) and the rest of evening dose at bed. That way I keep bedtime really smooth, no wear off. Nighttime had been very dangerous here. I also use chamimile nightly on him as additional securty.

His total per day right now, since he had a growth spurt, is 1100mg per day. That balances out the 20 mg (divided) of buspar he's taking. Before buspar and his growth spurt he was on 800-900mg iirc. He started buspar at 15mg (divided) and 1000 mg 5htp. That's with 100mg niacin at noon. Growth spurt, so now 20mg to 1100mg. I'm considering taking it up to 1200mg because he's right on the line. I use niacin (2X100mg) as rescue and had to do that today,. If it's a pattern, I bump the 5HTP.

I'm not anti med or saying what you should do. I'm just saying how we got there and how much it's taking. It's tenuous but works. Problems are cost and no holdover, have to be on time. Other imperfections (problems when sick, rattled by things, etc) are just realities of his mix of chemistry and social thinking. The change with niacin is dramatic. The D is stabilizing and slurps methyls, so it's the least controversial thing to take up.

I acknowledge there are side effects to high doses of the 5HTP, but there are side effects to meds and jail too. We'll walk this path while it's working and then see. He's SO much better on this mix right now.

Total aside but is there any possibility their methyls are high from seasonal stuff like peaches or takinng ibuproen or benadryl?

Edited July 30, 2020 by PeterPan

[WoolC]

1 hour ago, Terabith said:

Really, you can figure out if your kid has ASD by going through the DSM criteria and going yes/ no to does he meet it.  It's really that simple.  

I mean, an evaluation might be necessary for therapy or funding purposes, but you can figure out the answer yourself.  

Seems rather obvious, doesn’t it?  Seriously, I haven’t done this for him, I’m missing the forest for the trees....so I just checked and yep, he’s got every single one.  The description of level 1 social communication and repetitive behaviors describes him very well.  
 

I think I’ve been conflating a lot of ds11’s struggles with Autism instead of differentiating between neurtotype and comorbid issues.  He (Ds11) has eating struggles, insomnia, selective mutism, severe anxiety, rituals/compulsions, etc. so ds9 comes across a lot less complicated, but really, he does tick the social and repetitive/restrictive boxes with ease.  In addition to that, we already adapted our lives around ds11’s needs so that ds9 has always been in inclusive environments and had so many supports built in right off the bat.  
 

Thanks for bringing me back to the basics here!

[WoolC]

1 hour ago, PeterPan said:

With myself and my ds (similar chemistry, mine is more complex) I take the D up (aling with K2) until he gets insomnia and back off slightly. So for him right now that is 10k IU a day plus 4 capsules K2. That's summer, igher in winter. THEN with that in place I use a 12 hour (natrol) 5Htp and crank it up till he wakes up happy and is stable all day with morning/evening doses. I split his evening dose so 100mg (time release) at 5:30 (dinner) and the rest of evening dose at bed. That way I keep bedtime really smooth, no wear off. Nighttime had been very dangerous here. I also use chamimile nightly on him as additional securty.

His total per day right now, since he had a growth spurt, is 1100mg per day. That balances out the 20 mg (divided) of buspar he's taking. Before buspar and his growth spurt he was on 800-900mg iirc. He started buspar at 15mg (divided) and 1000 mg 5htp. That's with 100mg niacin at noon. Growth spurt, so now 20mg to 1100mg. I'm considering taking it up to 1200mg because he's right on the line. I use niacin (2X100mg) as rescue and had to do that today,. If it's a pattern, I bump the 5HTP.

I'm not anti med or saying what you should do. I'm just saying how we got there and how much it's taking. It's tenuous but works. Problems are cost and no holdover, have to be on time. Other imperfections (problems when sick, rattled by things, etc) are just realities of his mix of chemistry and social thinking. The change with niacin is dramatic. The D is stabilizing and slurps methyls, so it's the least controversial thing to take up.

I acknowledge there are side effects to high doses of the 5HTP, but there are side effects to meds and jail too. We'll walk this path while it's working and then see. He's SO much better on this mix right now.

Total aside but is there any possibility their methyls are high from seasonal stuff like peaches or takinng ibuproen or benadryl?

Not currently,  but I have noticed major aggression issues with ds9 when he took Benadryl in the past and wondered about that.

[WoolC]

2 hours ago, PeterPan said:

And further, getting the chemistry completely treated will make the ASD more apparent. The doc is seeing it but it;s so masked by the aggression and anxiety that the mom can't. My ds is GLARINGLY autistic wth his anxiety treated. He's so calm that the behaviors come out. 

Yes, this is definitely the case.  The aggression, hyperactivity and anxiety feel so urgent, it’s where my focus has been.  

He stims and has a special interest in empty milk/juice cartons, he absolutely struggles with transitions and doesn’t respond when spoken to half the time among many other things that are just like a blip on the radar compared to the rage.  I haven’t really taken stock and put the whole picture together.  I’m feeling a bit ridiculous to have missed it honestly.

Edited July 30, 2020 by WoolC

[PeterPan]

3 hours ago, WoolC said:

Not currently,  but I have noticed major aggression issues with ds9 when he took Benadryl in the past and wondered about that.

Yup, benadryl contains methyls. Btdt sigh

[PeterPan]

3 hours ago, WoolC said:

I’m feeling a bit ridiculous to have missed it honestly.

It sounds like you've been busy dealing with a lot. At least you've got a good practitioner helping you sort it out.

[kbutton]

On 7/30/2020 at 6:34 PM, WoolC said:

He stims and has a special interest in empty milk/juice cartons, he absolutely struggles with transitions and doesn’t respond when spoken to half the time among many other things that are just like a blip on the radar compared to the rage.  I haven’t really taken stock and put the whole picture together.  I’m feeling a bit ridiculous to have missed it honestly.

Welcome to what sounds like 2e autism, support level 1ish. 🙂 You will likely have days and weeks where you forget ASD is a thing, and then it will show up glaringly obvious in the most unexpected places. 

I think 9-11 has been the hardest age with my boys, especially the one with ASD. If you can work on sensory, that might help with anxiety. We found an OT who was really good with sensory, and it was life-changing. Before you go down the rabbit hole of genetics, I wonder if tamping down sensory might change his reaction to meds.

I don't want to oversell OT because our experience isn't universal, but it can be amazing. We did OT before ADHD meds, and I am not sure what a stimulant med would've done to my son's pre-OT behavior. My son couldn't be approached from behind or to the side without a freak out or going all limp while banging himself into walls (on purpose). If the environment was particularly noisy or chaotic and he was approached or touched from behind or the side, he would go into fight or flight mode and take out whoever touched him, and he would not even remember doing it a few minutes later--truly had no idea. OT fixed all that. He would still sometimes get rage-y if triggered too much (we didn't have the advantage of help or scaffolding from ABA or anything other than our own common sense for a couple of years), and we still have the occasional meltdown, but there are usually extenuating circumstances, including profound language issues that you would NOT realize are there (also being remediated). After OT and meds, he learned coping strategies, including how to do something that might not be socially acceptable but is not a rage, such as throwing wadded up paper, or waiting until he got someplace safe to have a meltdown. Anyway, the OT was super powerful and included a very careful brushing protocol that was really hard for him but astonishingly transformative (I would NOT do it without professional help). He also had convergence issues with his eyes, and when we did VT for that, it was also helpful to sensory and some hypervigilance that was the result of not knowing where things were going once they got close to his face (one eye would bounce out of alignment when trying to focus on close objects). This was also very subtle, and even the optometrist wasn't sure he'd benefit from therapy until she really worked his eyes out, at which point his vision got so wonky that she said, "I can't believe he learned to read like this!" Most of his other visual processing was intact, including having a remarkably wide visual field, which probably also contributed to his hypervigilance. It was a very short, precise course of VT.

[Lawyer&Mom]

3 hours ago, kbutton said:

Welcome to what sounds like 2e autism, support level 1ish. 🙂 You will likely have days and weeks where you forget ASD is a thing, and then it will show up glaringly obvious in the most unexpected places. 

I have one of these, and really needed to read this today.  Sometimes I feel like I’m neglecting her needs when I forget ASD is a thing, but really she was doing fine, until she wasn’t.  

[WoolC]

4 hours ago, kbutton said:

Welcome to what sounds like 2e autism, support level 1ish. 🙂 You will likely have days and weeks where you forget ASD is a thing, and then it will show up glaringly obvious in the most unexpected places. 

I think 9-11 has been the hardest age with my boys, especially the one with ASD. If you can work on sensory, that might help with anxiety. We found an OT who was really good with sensory, and it was life-changing. Before you go down the rabbit hole of genetics, I wonder if tamping down sensory might change his reaction to meds.

I don't want to oversell OT because our experience isn't universal, but it can be amazing. We did OT before ADHD meds, and I am not sure what a stimulant med would've done to my son's pre-OT behavior. My son couldn't be approached from behind or to the side without a freak out or going all limp while banging himself into walls (on purpose). If the environment was particularly noisy or chaotic and he was approached or touched from behind or the side, he would go into fight or flight mode and take out whoever touched him, and he would not even remember doing it a few minutes later--truly had no idea. OT fixed all that. He would still sometimes get rage-y if triggered too much (we didn't have the advantage of help or scaffolding from ABA or anything other than our own common sense for a couple of years), and we still have the occasional meltdown, but there are usually extenuating circumstances, including profound language issues that you would NOT realize are there (also being remediated). After OT and meds, he learned coping strategies, including how to do something that might not be socially acceptable but is not a rage, such as throwing wadded up paper, or waiting until he got someplace safe to have a meltdown. Anyway, the OT was super powerful and included a very careful brushing protocol that was really hard for him but astonishingly transformative (I would NOT do it without professional help). He also had convergence issues with his eyes, and when we did VT for that, it was also helpful to sensory and some hypervigilance that was the result of not knowing where things were going once they got close to his face (one eye would bounce out of alignment when trying to focus on close objects). This was also very subtle, and even the optometrist wasn't sure he'd benefit from therapy until she really worked his eyes out, at which point his vision got so wonky that she said, "I can't believe he learned to read like this!" Most of his other visual processing was intact, including having a remarkably wide visual field, which probably also contributed to his hypervigilance. It was a very short, precise course of VT.

Your description of sensory stuff triggering rage does sound a lot like my son.  Our local OT isn’t well versed in sensory issues.  We wasted a year with her for my oldest.  There is a SIPT certified OT in the next town over but they’re not seeing anyone in office due to COVID so we’re limited on that for now.

[kbutton]

1 hour ago, WoolC said:

Your description of sensory stuff triggering rage does sound a lot like my son.  Our local OT isn’t well versed in sensory issues.  We wasted a year with her for my oldest.  There is a SIPT certified OT in the next town over but they’re not seeing anyone in office due to COVID so we’re limited on that for now.

I hope the prospects brighten. In hindsight, it was really providential that we got a great OT on the first try. She had to pull out quite a few tricks to find just the right combo of things for my son--she really knew how to look at him and observe his behavior after trying something to figure out what the stimulation of OT was doing to him (good, bad, or neutral) so that she could adjust. He did a lot of spinning followed by deep pressure--getting the right blend/timing was tricky. He had not developed the sensation of feeling dizzy before that. The brushing we used is called the Wilbargar brushing protocol if you want to ask the SIPT OT about that at some point. It was pretty awful the first couple of days, then became neutral, then no big deal, and then changes were permanent. She helped us know what to expect.

[prairiewindmomma]

On 8/2/2020 at 7:48 AM, kbutton said:

Welcome to what sounds like 2e autism, support level 1ish. 🙂 You will likely have days and weeks where you forget ASD is a thing, and then it will show up glaringly obvious in the most unexpected places. 

I think 9-11 has been the hardest age with my boys, especially the one with ASD. If you can work on sensory, that might help with anxiety. We found an OT who was really good with sensory, and it was life-changing. Before you go down the rabbit hole of genetics, I wonder if tamping down sensory might change his reaction to meds.

I don't want to oversell OT because our experience isn't universal, but it can be amazing. We did OT before ADHD meds, and I am not sure what a stimulant med would've done to my son's pre-OT behavior. My son couldn't be approached from behind or to the side without a freak out or going all limp while banging himself into walls (on purpose). If the environment was particularly noisy or chaotic and he was approached or touched from behind or the side, he would go into fight or flight mode and take out whoever touched him, and he would not even remember doing it a few minutes later--truly had no idea. OT fixed all that. He would still sometimes get rage-y if triggered too much (we didn't have the advantage of help or scaffolding from ABA or anything other than our own common sense for a couple of years), and we still have the occasional meltdown, but there are usually extenuating circumstances, including profound language issues that you would NOT realize are there (also being remediated). After OT and meds, he learned coping strategies, including how to do something that might not be socially acceptable but is not a rage, such as throwing wadded up paper, or waiting until he got someplace safe to have a meltdown. Anyway, the OT was super powerful and included a very careful brushing protocol that was really hard for him but astonishingly transformative (I would NOT do it without professional help). He also had convergence issues with his eyes, and when we did VT for that, it was also helpful to sensory and some hypervigilance that was the result of not knowing where things were going once they got close to his face (one eye would bounce out of alignment when trying to focus on close objects). This was also very subtle, and even the optometrist wasn't sure he'd benefit from therapy until she really worked his eyes out, at which point his vision got so wonky that she said, "I can't believe he learned to read like this!" Most of his other visual processing was intact, including having a remarkably wide visual field, which probably also contributed to his hypervigilance. It was a very short, precise course of VT.

Yes, this. And yes, 9-11 was the worst. And, yes, OT for sensory and VT were transformative for us.

[PeterPan]

9 hours ago, prairiewindmomma said:

And yes, 9-11 was the worst.

Oh that's an encouraging thought. People keep telling us to watch for puberty by ds has been kind of adorable lately. Even the dog likes him now.

[kbutton]

15 hours ago, PeterPan said:

Oh that's an encouraging thought. People keep telling us to watch for puberty by ds has been kind of adorable lately. Even the dog likes him now.

I hope things continue to smooth out for you guys!

 

[WoolC]

I really hope 9-11 is the worst here, too.  If it gets any worse than the past year I don’t know that we’re going to survive it!  The boys are only 18 months apart and they get caught up in one another’s moods very easily.  As soon as I get one on the upswing it seems like the other is going off the rails.
 

Thanks for sharing about the OT and VT.  Hopefully we can look into it soon!

[prairiewindmomma]

By 12 both Ds were easing out of the hormones. They both grew about a foot and were mainly concerned with eating and sleeping. Both became fully human again by 14. 
 

Fwiw, at the worst of it, I paid each boy $10/hour to haul dirt and mulch and rock and redo my landscaping. $10/hour was cheaper than any therapy and they each used their funds to buy electronics they wanted....which I probably would’ve gotten for presents at some point for them anyway. If they can safely use a shovel and and a wheelbarrow, I highly recommend landscaping as a form of getting a mental break for you. The heavy physical work was great OT for them...but a few hours a day break for me for a few weeks was fantastic for me. They were inefficient, but I got some nice landscaping out of it.

Edited August 4, 2020 by prairiewindmomma