ASD Anxiety

[kiwik]

I don't usually post here and I think I want reassurance as much as anything.

I have a 13 year old with ASD1.  Academically gifted but completely unable to handle school.  He used to go into a flight/fight response when faced with anything new or frustrating.

He has come so far at home and last week did several things which though small were significant (moving to a different position in ballet when asked by the teacher, going to a new science group etc).  But when at that same ballet class he was asked to do a free dance as part of exam practice he walked out.  He went back after the exercise and finished the class and the teacher understands - and I know he will probably get there  and the teacher deliberately started practice 4 months in advance to prepare him.  

But I am worried that he still isn't quite grasping that it is an anxiety response (or he does but is not admitting it - gifted kids are very contrary at times) and I am wondering if there is any suitable progranne or therapy that would help him work on that.

Edited August 6, 2022 by kiwik

[kbutton]

I am bumping this--this is not the most visited part of the boards. Sorry!

Does he have sensory issues that he's had OT for? I ask because working on those virtually fixed my son's fight or flight responses. I am sure there are other explanations for fight or flight as well. I have been told that sensory stuff "matures" into anxiety.

Is the free dance part of the problem specifically? Open-ended things are notoriously difficult for people with autism. I realize free dance doesn't necessarily mean unchoreographed, but maybe not having a stringent rubric might make him feel like it's still too open-ended when he performs it? 

If you look at functions of behavior in ABA, it can help explain why he is having that response. Maybe ABA language would be more friendly to him, especially since it applies to all behavior, not just his. 

[PeterPan]

Your ds functions where my ds does, and I can tell you that it's part of why my ds' label is ASD2, not ASD1. You're talking significant support when someone has to do that much to help him participate. I know that you might feel like numbers don't matter, but I think in our *minds* they do. They tell us what to expect and they make us question what we're seeing and how we're handling it. So if you had a higher support level on him (which later evals might show is warranted), would it change your perspective on what he's doing? You still want him to function better (or self-advocate better), but at least it would make sense.

Piece two is interoception work leading to improved self-awareness and self-advocacy. The other part of how you get to ASD2 is language, and when someone is leaving the room and not able to self-advocate that's a language issue. https://www.kelly-mahler.com/what-is-interoception/  Here's your link to start learning about interoception. You can buy the curriculum and do the work yourself or hire an OT, SLP, psych, anyone will to do it. I suggest doing it yourself.

The third issue is the underlying chemistry of the anxiety. Lots of ways to approach that, and obviously you can try a CBT/interoception/life modification type approach. Really though, there's chemistry involved and it's knowable. We ran genetics, found a number of things contributing to his anxiety (some easily treatable, like a zinc receptor defect where zinc modulates gaba) and we treat them. So meds, genetics to drive supplements, whatever you want, but my observation is it's chemistry PLUS awareness PLUS OT strategies, not only one thing. 

My ds does amazing things now, completely amazing, but we've pretty much put this stuff (self-awareness, self-advocacy, getting the chemistry evened out, etc.) at the top of the docket. Puberty has been horrible, basically doubling everything he needed before. So that's another destabilizing factor to consider. Not only has his chemistry gone bizerk (he walks around the house roaring like a lion), but his reflexes that we had previously worked on have re-emerged, adding to the dysregulation. So we're literally working AGAIN on the things we did 5 years ago, sigh. 

He actually seems like he's doing pretty well if he's participating in a ballet class. Kudos to you and I'm sure you've done a ton for him. Maybe just think through what you can tackle next. You don't have to do it all at once. Maybe pick the most obvious/pressing thing and then work on the next thing after that.

[PeterPan]

On 8/6/2022 at 1:40 AM, kiwik said:

But I am worried that he still isn't quite grasping that it is an anxiety response (or he does but is not admitting it - gifted kids are very contrary at times)

Sometimes when people have big emotions they shut down. Once the stress goes up and the person is in fright/flight, those cortisol levels are up. Cortisol shuts down learning, so you no longer have a teachable moment. The teachable moment is when he's calm, long before, where he's learning to recognize his body emotions (affective and hypostatic). 

I think, and this is just my house and our reality, that it's a lot to expect some kids (kids who need more significant support in some situations) to do EVERYTHING all at once. Like it might be a process and involve some *maturing* of the skills. Not a wait and see but a teach + wait + teach some more + wait and see... You get this toggle of instruction and maturity. Without the direction instruction he's going to have a lot harder time getting there. If he COULD do these things, he would. I think that's always a fair rule of thumb. If he COULD participate without going in fright/flight, he would. If he COULD problem solve his big feelings for himself, he would.

So the only question is how much instruction it's going to take paired with time for him to keep working on it. And you might want to start sooner rather than later, because kids who function at this level seem to have a magic number of 3, as in 3 years. You start working it now, working it faithfully, and he'll progress and in 3 years be at that wow place you're wanting. So start now. You don't know what can be, but you're seeing what won't be if you don't. Interoception work literally changes the course of people's lives. 🙂