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Storygirl

Therapy/counseling for teen with high functioning autism

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DS15 has a new diagnosis of ASD level 1, and the psychologist recommends counseling and therapy for him, because she thinks some areas may be able to improve. I am both totally on board with this and also skeptical about whether lasting improvement in certain areas will happen.

My skepticism comes from the lack of progress over the past years, so far. For example, the psych included a list of things that she thinks he should work on, and some of the things on the list (interpreting body language, theory of mind, self advocacy, adjusting behavior to the situation, increasing empathy skills, and so on) are similar to goals he has already been working on with an SLP through the school, for years. He also expresses resistance to working with the SLP (though he did like the school SLP this past year) and dislikes social skills groups that he has been a part of.

We've also had private psych counseling twice -- once when younger, and again two years ago -- for anxiety and oppositional behavior (at home; he behaves fine at school). Although DH and I learned some things from sitting in on his sessions, I really don't think that DS did.

The psych who did his evaluations feels that he can make progress if we find a counselor who better understands teens with autism, and she has given us some contact information for several possible places.

But I feel.... I don't know. I need to feel some hope, I guess. Hope that DS might connect with a counselor who can get him to buy in and actually work to improve things. And the first step is getting DS to even want to work on things, because he seems fine with everything as it is (other than anxiety, which he has asked for help with).  Because if the desire for improvement in these areas is external, coming from us as parents or from the counselor, instead of internal, I don't see how he will care about participating fully. Is it reasonable to expect a counselor to be able to get him to care?

His list also includes things such as working on self-awareness and self-monitoring, coping skills, conflict resolution, flexible thinking, etc. I totally see the need for improvement in all of these areas. But DS does not care about any of that.

I am willing to try. But I feel at a loss about how to figure out whether any particular person would be the right person. I can call offices, of course, and ask questions about how they work with teens, but I'm not sure I have the right questions to ask.

Anyone have any insight to share?

Edited by Storygirl

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Oh, those who have been around the LC board for awhile will know this, but I'll add it for those who do not. DS has a long list of previous diagnoses, including Nonverbal Learning Disorder. We have always suspected autism. Although previous psychs have told us that they did not think he had ASD, we questioned that, because he had never had a thorough evaluation just on the autism question. Until now.

So the ASD diagnosis opens up some doors for us to get him additional help, but it's not really news for us. It's just an official documentation of what we already really knew.

Edited by Storygirl

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Here is a picture of how DS does in counseling sessions (or doctor's appointments or meetings, etc).

He sits slumped in his chair, looking down, and interacting as little as possible. He answers questions with yes or no, or the shortest possible sentence he can get away with. He needs to be convinced and prompted to try exercises (such as relaxation exercises or conversation practice), and then he puts as little effort into it as he can get away with. He never practices things he has learned at home, unless we make him do it with us. And he practices unwillingly and often gets angry at us for making him do it.

He will sometimes refuse to do what the counselor asks. A recent example is from when he was evaluated by the county for disability funding, and he outright refused to count coins for them and would not answer some of their questions. We actually warned the psych who did his ASD evaluation of this, and she had us give him an incentive for participating in her sessions, and he was able to do all that she asked, but still with reluctant verbal participation.

He never masters the skills he has been taught in previous therapy or uses them independently.

He has had enough speech therapy at school that he knows what the right answers are, sometimes, but he doesn't ever use the skill. He can recognize facial expressions, for example, and what they mean, but he doesn't use them.

Last year when I took him to a social skills group, he berated me verbally for the entire drive there and the entire drive home, every time every week, for requiring him to do it.

It all makes me feel like the effort we put into therapy like this is not paying off.

He does, by the way, talk a lot at home, and he has been doing well with peers at school. But he has trouble with pragmatics and shuts down verbally when speaking with adults, like teachers and doctors. It's not that he cannot talk; it's that he does not do it with adults. If he won't talk and participate, can therapy even help him?

 

Edited by Storygirl

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I have seen stuff about this on the Social Thinking website in their free articles.

I have seen them mention strategies or just ideas for helping kids realize they would get something out of therapy, instead of it seeming like it’s something other people want them to do.

I don’t know that anybody is making any promises or guarantees, but I think it’s pretty known issues for autism, there are people who are focusing on it, and the psychologist was able to engage with him (I think?).  

I don’t think you have to do it right now if you are busy or have other goals that are taking a priority.  But I think it is worth a shot, too, to try people who work with autism.  It is a very known, common problem to have issues with the things you are mentioning.  

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He’s at an age where kids don’t want to be fixed.

I’ll try to think up something more helpful. 

Does he have anyone he does well with or listens to?

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You don’t build from negative or force.

It almost sounds like he was anxious about the groups. Did you pair them positively? When I started with my ds I paired them with donuts every session. You didn’t have the diagnosis to realize you should be using these strategies. 

It takes time to lower stress about new things. And pairing.

Might be inclined toward behaviorist and ABA or RDI rather than so much talking with him. Maybe couch it in something he wants, and ABA worker who can do things he’s into.

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Some of your description fits 15yo boys who tend to be resistant quite aside from ASD.

given that he’s interested and asked for help with regard to anxiety, could you start with that?

maybe ask potential therapists what they could do to help with that and whether they could work in some other areas of concern too?  Because probably some anxiety is related to difficulties in the other areas even if your son doesn’t realize that . 

And how do they deal with (reach) resistant ASD teen boys? 

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1 hour ago, PeterPan said:

He’s at an age where kids don’t want to be fixed.

I’ll try to think up something more helpful. 

Does he have anyone he does well with or listens to?

I'm sure it's partly a teen attitude thing; then again, he has always been this way. So it's his personality.

He listens to teachers better than parents. His teachers consider him a rule follower, while at home he is oppositional.

 

1 hour ago, PeterPan said:

You don’t build from negative or force.

It almost sounds like he was anxious about the groups. Did you pair them positively? When I started with my ds I paired them with donuts every session. You didn’t have the diagnosis to realize you should be using these strategies. 

It takes time to lower stress about new things. And pairing.

Might be inclined toward behaviorist and ABA or RDI rather than so much talking with him. Maybe couch it in something he wants, and ABA worker who can do things he’s into.

I wouldn't use the words negative or force. I would probably use the word "require." We do require things that he does not like or want to do. His teachers do, as well, of course. If we don't require him to go to therapy, he absolutely will not do it of his own accord.

I didn't detect anxiety in him about the social group, but it can be hard to tell. He doesn't express his feelings much and probably is not always aware, himself, when anxiety influences his behavior.  I think it is more that he doesn't like working on social skills, because it is hard and uncomfortable for him. The emotion he was expressing about the social skills group was anger. He was mad that I was having him go. During the actual sessions, he did not express negative feelings, as far as I know. He usually would not do that in a group setting and would just clam up and not participate.

It is normal for him to be angry at me, but not at the unrelated adults. Sometimes he will tell me, "I'm not going to do this. I'm going to tell them how stupid it is," and I will tell him to go ahead and express his thoughts to the leader/teacher/whomever. But he doesn't.

I didn't use an incentive or reward for those social group sessions. I don't know if it would have helped, because he was so adamant about hating to go. But knowing that he would get something he wanted (a haircut) after his ASD evaluation session did help him cooperate that day. I did talk with the psychologist about how to get him to buy in on the therapy sessions she was recommending, and she said to try a big incentive.

Therapy that is dependent upon him talking about his thoughts or feelings will definitely not work at all with him. He needs help learning to do those things; they are the skills that he needs to work on, instead of the method a therapist could use with him. I have trouble envisioning counseling that works without the patient being willing to engage. I need to form a picture of what ABA or RDI would look like with a teenager. I don't even know what to ask a therapist to do with or for him. The two counseling psychologists that we worked with previously were all about talking. They worked on certain skills with him/ us. But it was through talking. His participation was minimal.

I'm stumped, other than calling around and asking this list of people what they would do to work with him.

 

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47 minutes ago, Pen said:

Some of your description fits 15yo boys who tend to be resistant quite aside from ASD.

given that he’s interested and asked for help with regard to anxiety, could you start with that?

maybe ask potential therapists what they could do to help with that and whether they could work in some other areas of concern too?  Because probably some anxiety is related to difficulties in the other areas even if your son doesn’t realize that . 

And how do they deal with (reach) resistant ASD teen boys? 

I have thought about the bolded. He has asked if there is a medication he can take to help with anxiety. He's willing to take medication (theoretically -- he doesn't like taking the ones he already is prescribed). Perhaps he thinks taking a pill would be a simple cure? But I'm not sure he is willing to work with a therapist on the anxiety. I will see if I can gauge his willingness.

He does not present as being anxious generally, but he worries about certain things. He worries about dangerous things happening. He wants to be sure doors are locked. He worries about weather and storms and why the moon looks funny and whether the world is going to end. But it's occasional and seems situational, not constant. Or at least he does not express it constantly. He may be thinking things that he does not express, and in fact, that is probably likely.

So it surprised me that he recently asked if there was such a thing as medication for anxiety. It's unusual for him to ask that kind of question. It does, perhaps, open doors for us to offer a chance for him to meet with a therapist more willingly, if we start with it being a way to help the anxious feelings.

 

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I just learned today that my son wasn’t telling me about a significant problem because he believed if he did I’d make him see a therapist...   might be that becomes yet another reason not express something being felt (or thought)...

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If it’s possible I think you should ask the psychologist if — there are any books she could recommend to you, or if there are any articles she could recommend to you, to help you understand the treatment approach she is recommending.

When you mention goals — I have ideas of how some of those goals have been worked on with my son — and it’s very — he is *actually taught things.*

With autism I think a lot of things have to *actually be taught.*

Without autism I think the assumption is much more:  “the child possesses the skill, or basically possesses the skill, but is not currently practicing the skill.”

This is such a different basis for therapy.  So, so different.

This is about Step 3 for autism, instead of “all the steps.”  It’s about Step 3 for autism, and then Step 4 is generalizing.  

“The big incentive” IS an ABA strategy.  This is where it gets a little silly with ABA, because obviously ABA doesn’t “own” big incentives.  But nonetheless — it IS a major ABA strategy.  It really, really is.  A lot of ABA strategies involve incentives and how to make them be *effective.*

So to me — there is an example of — if not how “ABA” could work with him — then Definitely an example of how an “ABA strategy” could work with him.

A lot of people know about and being in “ABA strategies” even if they are NOT “doing ABA.”

I think that — the psychologist has met your son, worked with him, and she has met and worked with other similar children ——————— I think it is reasonable to think she is making a reasonable suggestion.

I think it’s reasonable to think the autism part will help to make things more effective.  I think it’s reasonable to think the therapy technique is not going to be ALL language/abstract or start at a level that already assumes a lot of social understanding and social motivation on the child’s part.  Those are core issues with autism.  

I think if you could have more knowledge from reading some books that would help.  Or if they could explain “I am trying strategy x in this way,” then you can find out about strategy x instead of it just seeming random or not knowing where things are going.  

Those are things that have been helpful to me.  

Here is the thing, ime, about asking about how a therapist would approach therapy...... they haven’t met your kid.  They don’t know what goals they would prioritize, or how they would program to meet those goals.  That is assuming they are individualizing their therapy — and if they are — then they are not having the same goals and programs for everyone who walks in the door.  So that makes it very hard to ask “what would you do.”  

I also think that — when therapists give their one-sentence summary of a book chapter or a book or a long webpage ——————— it is never satisfactory to me.  It never explains to me what they are going for or gives me an “a ha moment.” I think some people get a lot more out of the one-sentence summaries/explanations than I do.  I don’t get a lot and it leaves me frustrated.  

I think with a new diagnosis and possible lack of knowledge about the whole framework people are working under (which probably involves a vision of using evidence-based practices to reach some generally-agreed-on meaningful goals in a generally-agreed-on order, but yet all very vague lol) ————— and then when you find out about therapy goals and approaches you can fit them into that framework.

But I have been reading about math and they talk about — you have to learn about concepts, practice problem-solving, and memorize math facts.  You have to have all 3 to make good progress. 

I think it’s this way as a parent — you can learn about things, but at a certain point you have to try them out to see how they work.  

But if you are not feeling really good about the whole idea, I think finding out more information might be the way to go.  Then you can have more buy-in for being the one who invites all this calamity on yourself by trying to make him go.  Or you might think you can ask for a couple of things to be done at school.  Or you might ask somebody who already works with him if that person could try one or two things to see how they go.  These are options.  

The thing is — when you have a list with potentially 20 goals on it (I don’t know but I have gotten these LONG lists!!!!!!!) then — in reality there are many options for exactly how to work on them.  And it’s possible that someone could look at the list and say “we should focus on these three for these reasons” and then you can be somewhat off the hook for the rest of that long list.  

But I don’t think it’s supposed to mean “Okay, Mom, get ready for some all-consuming drudgery, here are some goals to check off over the next xx years.”

A lot of it is just awareness that those are probably going to be issues.  

Here is an idea I have, too, that has some opinions I hold in it..... if you have a counselor who has ever worked with kids with less language or a higher amount of combative behavior than your son — and had engagement with them — then you know that person can engage with kids “harder” than your son.  That is a good sign to me!  However “harder” kids can also be easier to engage with — just with some more rough edges.  Kids who are less “letting it all hang out” can be more guarded and less willing to engage.  But at the same time — if it’s somebody who has experience with kids and has many strategies for engaging — it’s a good sign that they could engage with your son.

The thing about most therapists is — kids are usually not taking SO many strategies to engage with them.  For many kids — if you are nice, positive, caring, non-judgmental, all those things, then it’s possible to engage with them.

But with autism it is ALL ABOUT having many, many strategies to engage, because that is an autism thing. 

And it is common for people to say “he has a long history of not engaging, but this time he engaged.”

So I am optimistic there, that it is possible to have engagement.

However — if we are talking about steps 1-4, and engaging is step 1, as in — having interaction with the therapist vs NOT having interaction with the therapist — that is only step 1.  

It’s very important and foundational — but it’s Step 1.  There is a long way between that and skill acquisition,  independent practice of skills, generalizing skills, etc.  There is a long way between all of those steps.  

So it’s like — I’m optimistic the psychologist can recommend someone who can engage with him, because SHE engaged with him.  In my opinion she engaged with him by Using Strategies, and the counselors she recommends will know about  those Same Strategies.  

She engaged with him, and that says something about your son’s ability to engage and how effective strategies are with him.  It’s a good sign.

But it depends on kids sometimes, what is hard for them.  It’s hard to know how skill acquisition will go, how independent practice will go, how generalizing will go.

For me right now — my son can engage, that is going well for him.  But his skill acquisition is not magically magical.  For him, when he has acquired a skill he tends to be eager to practice it, and I can help with generalizing, and school can help with generalizing.  He does not particularly struggle with generalizing.

But skill acquisition is a pretty big issue.  It is rough.  I don’t have expectations of any magical skill acquisition, because — it is what it is.  I do have hope for progress but I am quite worn down and don’t expect very much, in a lot of ways.  But this is “looking on the bright side” for the skill acquisition that does happen.  

Anyway — I think someone could engage with your son, and there could still not necessarily be a lot of change in things, in a way that could be disappointing if you are hoping for more, but maybe is good enough if you look on the bright side and think “at least he is engaging with an adult” and “maybe we will see some small improvement over a long time period.”  I think that is common.  Or maybe he makes some progress on some things at first, and then the progress flattens out.  I think that is also common.  

But when the time is right for you and you have a good feeling — if that happens — I think it could be worth doing even without having super-high expectations.  

Its hard to explain, I can think things can be worth doing without expecting them to be amazing.  

 

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Here is the thing about pairing — pairing is about the therapist adapting to the child, showing interest in the child, doing what the child will like, etc, with only some very small “response requirements.”  

Okay — that is engaging.  It IS engaging.  

But there can be a lot between:  engaging more on the child’s terms, and moving that to be mor equal on both sides.  

That is a huge, huge step.

So with therapy where it’s okay to have just engaging as a goal, which I think it often is with autism (as far as I know — I don’t really know though) — then there can be engagement ————— but it can be a little far from “we want the child to work, we want the child to attend to us on a non-preferred topic, we want the child to talk about things that we think are important goals.”  

So for therapy where the therapist needs to address a goal on session 2 or 3, that doesn’t work if the goal is already into “what we want you to learn in therapy.”

It can take a lot more time of pairing/building rapport/engaging because — it can be harder to get kids to engage as it starts to be around topics they don’t want to engage in.  

I don’t know if I’m being clear.... it’s like, it can take a long time to “get things done,” unless your goals are very incremental and just “well he said hello when he came in the room!”  If you are happy somebody said hello when they came in the room, you may not be pushing a lot of “work.”  

Or you may be building exposure but with a low response requirement.  Which — could be very good but also far from “seeing a lot of results.”  

I think this is all just — how it goes sometimes.

To be honest — I think if your son sees someone who specializes in autism, your son won’t be “a tough nut to crack,” just because — he has some good things going for him, they imply he has and is practicing some skills.  So I think there are things to worry about as far as being frustrated with therapy but I think engagement is probably reasonable to expect, and it’s reasonable to expect not being yelled at in the car, because it’s reasonable to expect he won’t hate the therapist because the therapist will be engaging with him, not expecting him to do A, B, C, comply, comply, comply.  Or — at least that is how it would go with my son.  

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Also — I think it means something that the psychologist recommended 1:1 and not a small group.  This means something.  This means she thinks your son is at a level of 1:1 and not small group.

Small group is — generally — higher demands than 1:1.

So it’s not that “well I already tried social groups.”  It can be more — I tried something harder, now I’m trying something easier.  

A lot of kids work up from 1:1 to a small group.

It does depend on the model of the small group, but unless the small group is designed around just having a child function and have a positive experience in a small group — then small groups are assuming a child already has some certain skills/behaviors that have been practiced first 1:1.

So 1:1 is easier, and he isn’t recommended for a small group right now.

Its not the same as saying “we tried this social skills thing and it didn’t work, the counseling is the exact same thing.”  

 

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I do think it’s a reasonable default to try a small group first because most kids can start there.  I don’t think that’s a mistake or something.

But it’s a “thing” to say — okay, a small group is not working, let’s go to 1:1.

Or to say “1:1 is going well, at last we can try moving to a small group.”  

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I also think — keep in mind there are different levels of social groups.

A social group that is based around kids doing a fun activity with no demands other than — having to be around other children and possibly some very minor waiting — is very different from a social skills group that has a lesson and then kids are expected to practice skills from the lesson.  

If he was in that kind of social skill group, I think 1:1 will be much easier for him.  

It would be nice if he (or anyone) could be ready for a class-type one, because some of them have very good outcomes. 

But if it’s not the right level then it is like putting a kid in math that is too high.  

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Also — some things I have tried with my older son.....

A choice between me bringing it up at school or we try something that is not school.  He is very highly motivated for me not to bring things up at school, and he has made grudging cooperation on a few things where he knew I would bring it up at school otherwise.  It’s hard to explain but if your son would not want to see a school counselor or have more time with a specialist of some kind at school, it could be helpful.  Or maybe he would rather have it at school and have you less involved (my older son is also motivated to have me less involved a lot of the time).  

I have also made some deals with him that if he goes to something a certain number of times and gives it an honest try, I won’t make him go after that.  We did that with church youth group (but not at our church, at one that has kids from a lot of churches).  Well — he went with a good attitude 6 times and then he didn’t want to go anymore.  But I was satisfied he gave it a chance.  I wouldn’t do that unless it was okay with you.  I also made him agree basically — he would try something else after a year.  At this point he has agreed to try youth group again after we move (next year).  But for now I think he gave it an honest chance.  I think he did go more than 6 times actually but I’m not sure now.  

I have also said things like “look you are going to do at least one thing,” but then he can have a choice of 2-3 things.  He doesn’t want to do any of them, but he still has some choice.  Choice (offering choices) is another big ABA strategy, btw.  This won’t work if he refuses all of them or uses it as leverage to say none of it must be that important.  But my older son will compromise this way.  It doesn’t take one conversation because he will argue for nothing, but if he doesn’t choose then I will choose for him.  But ideally he will choose because just the act of choosing creates buy-in (in theory).  But if he refuses then oh, well.  (Edit:  I will pick for him.)

 

Edited by Lecka
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Just as an example — for me I might look at office locations and let a child pick because an office is buy a fast food place he likes, and we could stop and pick up fast food.

It is SO shallow, but it is *totally* the kind of thing where it would create buy-in for either one of my sons.  

I could frequently bring up that they got to pick and now they can go to Taco Bell or whatever.  

It would honestly create enough buy-in that the counselor could be a little worse and the buy-in would be worth it.

It’s just one thing I might think about, but it has choice and a reinforcer — two strategies for buy-in.  It would go a long way.  

A choice between two offices is a limited choice and might not help — but it might.  I think it would depend, it might not help that much if the child actively, actively didn’t want to go.  Edit:  a lot of times it does help, though.  

Edited by Lecka
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I would also consider things like making deals to have less frequent sessions or taking off for breaks (summer or just times it would be optional to take a break), if there was better attitude.

This might not be at first, but a lot of times — sessions can be less frequent when kids are doing better.  And that can be motivating.  

I think it can help to be really explicit about what kind of attitude and actions would make me think that less was needed.  

I don’t quite know it, but there is some ABA strategy around — with a good attitude, you can do less work, but with a poor attitude, you will have to do more work.  I don’t quite “know how to do it.” But if kids are having a poor attitude in an effort to do less work (if this is *actually* what is happening, and not that work is too hard or they are anxious or they think they will fail — which are different things) ———— then it can be a strategy to encourage a good attitude by saying — okay, with a good attitude you can do less work.  A lot of times in real life — when kids have a good attitude they get given more work, and when they have a bad attitude they get let off of work.  So this is trying to do the opposite of that.

I don’t think I am great at this but it’s an idea I try sometimes.  

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Thanks, Lecka! All that is very helpful! I'm on my way out the door now, but I will plan to read through it all again, because you have given me some good things to think about.

The psych actually did not mention ABA at all when we talked to her, but she did put it in her report. I'm sure I can ask her to recommend something for me to read -- that's a good idea.

She also said that he could perhaps try a social group again later on, after other therapy, so that aligns with what you are saying about needing 1:1 before small group.

Gotta run

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Here is what I know about social groups:

Very early goals:  being around other kids, sharing toys At All, taking turns At All, doing an activity that the child likes but *didn’t necessarily want to do at that exact moment in time,* a few things about the activity *not being exactly how the child wants them to be.*

A little later goals:  playing games with taking turns, compromising about what game to play, staying in the group.  Don’t get too mad when you lose a game or the game doesn’t work out how you wanted.  

Then there is a big, huge gap.  

Then there are groups that are a lot more advanced with what they are working on and the level of participation they expect.  

My son is in the gap area, where he has met the younger-kid kinds of goals that they tend to work on in structured groups, and he isn’t ready for the advanced kind.

His goal for a long time has just been to talk more to other kids.  He was on a model where they look at initiating and responding.  Right now he does initiate and respond without prompts, but they would like him to do it more.  

It’s not really the kind of thing I think lends itself to a structured group, because they usually have more structured goals, I think.  It’s hard to explain but it’s a goal, but it’s not a goal where you can “teach” it.  But there are things to do to encourage it — but it’s not like you can spend one session encouraging it and then move on.  Those programs would (I think) assume a higher level already in place.

Separately — for 1:1, the adult can adjust to the child.  For small group, the child has to adjust to the group.  It is a much higher demand.  A model (though this might not apply) is:  the adult adjusts to the child 1:1, over time the child adjusts more to the adult 1:1, the adult increases demands over time, then maybe the child is ready to adjust to a small group.  (Edit: this might not apply too much because your son already does participate in peer groups.  My son is better with adults than peers, but I have heard of kids who do better with peers than 1:1 with adults — but I don’t know much about that — I just know it’s a thing and maybe would be more your situation?  Especially maybe kids who know how to get peer attention in kind-of-negative ways, but then that strategy that is successful with some peers does not go over well with adults.... which I have heard as a possible explanation for some kids.  Getting attention by saying some edgy things can be “easy” for kids because it’s not as complex a thing to say, I think.)  

Separately there is skill acquisition.  The child may need 1:1 to work on skill acquisition, then try the skills in a small group.  Or — maybe the child needs to get to “a certain base level” with 1:1, to develop a certain skill level, and then will be able to learn new skills in a small group.  That can go either way — some kids always do better with having skill acquisition be 1:1.  

There are a lot higher demands to attend in a small group than 1:1, and the teaching will be less individualized.  

But it has always been held up as a goal to me, to have my son be able to learn in a small group and not just 1:1.  

But for harder things it’s normal to think 1:1 would be needed.  The same as for any subject, to some extent.  

Edited by Lecka
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Also just a comment — but it is common with autism to have a hard time adjusting behavior to different groups (like peers or adults) and it is common to have success with one strategy with one group (say edgy things!) and then over-apply that. 

And it’s part not realizing or noticing that the strategy that works with one group doesn’t work with another group.

And it’s part that some strategies are much easier and some strategies are much harder (or even too hard at the moment), and then — in general, the child will default to what is easier that has succeeded in the past.  Whether or not it is appropriate or is working out very well for them in other situations.  

That’s a possible explanation for some things.  

I have always liked to look at things as missing skills if it is possible.

I would go with what the psychologist recommends, but I have liked Autism Internet Modules for some basic things.  It’s free but requires a log-in.  It is what they used for training aides in my previous school district, too, for them to have some basic information about autism.  

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The whole how to get “buy-in” is extremely important.  

If he only wants a medicine for anxiety, doesn’t want a person to help, that’s going to be less useful to use as a buy-in wedge.

Does he have intellectual ability to read and understand something which could show him that medication is just one piece but that thinking and behavior are also important with regard to alleviation of anxiety?

Are there things he wants in life? 

If so can any of that give a buy-in opening?

 

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10 hours ago, Storygirl said:

I wouldn't use the words negative or force. I would probably use the word "require." We do require things that he does not like or want to do. His teachers do, as well, of course. If we don't require him to go to therapy, he absolutely will not do it of his own accord.

 

So  -- this is a strange thing about ABA therapy.  There is a lot of talk about "placing demands" or "being aware of demands."  

A demand is anything with a response requirement.

But this includes things like walking into a room the child is in, or saying the child's name, or sitting down by the child.

These don't "seem like" placing a demand, but your child does have to respond to you being there, notice you, wonder what you are going to do, etc.  That is even if they don't make an outward sign or say anything.  They have still had to respond to you.  

So we don't actually say "oh, I have required him to have me walk into the same room he is in.... oh, I have required him to glance at me and say hello because of my presence in this space."  I have been told "your presence is a demand because it creates a response requirement."  

So if we're at a point of saying that walking into a room and saying hello is "placing a demand," then -- taking someone to a therapy appointment is definitely a demand.  

Personally -- it's clearly a bit ridiculous, but at the same time, I think it can help to be aware of demands and try to strategize around them, instead of thinking some things are just bare minimums or totally innocuous.  They might be bare minimums and totally innocuous, but they are still demands.  

You have a big picture of your son's whole day or week or month, and all the demands placed on your son (cumulative demands), and all your interactions with your son (some of which are placing demands, some of which are being responsive to your son, some of which are doing fun things, some of which are making sure he does things that he really does need to do).  

If he already has a busy schedule, then there are already a lot of demands on him, and you might be involved in some of them already.  That's a big picture.

I happen to know -- if I am wanting therapy to happen, it can mean I must adjust and have less other demands and more reinforcement.  That can be my big picture.  I may be able to get a lot more done at home when there is not therapy.  

It's a balance, because having too few demands can throw kids off, too.  

But sometimes adding therapy can mean backing off on other things. 

It's a hard balance, and I think you might need to think about your top goals.  What would make the biggest difference in your home right now, in the short term.  What do you see as the biggest problems, in the long term.  Will therapy address your top goals (short term and long term) in the most effective way, or will it be off on the side, taking time away from more important things?  

Sometimes therapy can be worth it because you hope it will help in the long term, even if it's not addressing short-term concerns so well.  

But I think it is worth looking into it.  

You might also ask people their opinion.  What do you think the most important short- and long-term goals are?  What is the best way to reach them?  

There might be things on your long list, that have some significance you aren't familiar with, that might be (or might be hoped to be lol) things that could really help a goal, but it can be hard to know how those things connect together without talking to someone knowledgeable about it.  But a lot of people are knowledgeable that way, too.  

Something to think about is -- did the psychologist, at this point, make a kind-of generic suggestion (not that it would be totally generic, but a little generic) about seeing a counselor.  And then the counselor will do the next step of -- thinking about what goals to do.  Or -- is the fact of suggesting a counselor, already an act of the psychologist thinking "well a counselor will address a, b, and c from this long list, and I think that is the best next set of steps to take right now."  Because if it is that ------- then there is already some thought process the psychologist has made, in suggesting a counselor.  

If there's some thought process there -- then I would be inclined to trust the psychologist's thought process as far as next steps.  

If the psychologist is more handing it off for somebody else to look at the big picture and think about goals ------- then I think it's possible that you might look at what you could expect to get from a counselor, and if that's worth the effort it would take, and potentially backing off on other things.  

It's really okay to decide that you will read up on things for several months, let some current things run their course, and then potentially subtract one or two things in order to add in therapy.  Because there is a big picture, too.  

It can just be hard to know exactly what different things will do -- it can be hard to know exactly what you might gain from seeing a counselor.  But I think it is at the top of the list a lot of the time -- I don't think it's often "just an extra."  But that doesn't mean you have to blow everything else up right now.  

You could also think about ratcheting some other things down, or ideally, some other things improving so that they are not so much effort, and then in that space -- maybe that is the space that is now available for seeing a counselor.  

And then hopefully after a while seeing a counselor is routine, and there is more energy for other things, too.  

 

 

 

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This is a whole idea I had to confront and think about how I would address it though -- if I am buying into an idea where just my presence is a demand -- then does that mean that my presence is "negative" or "a force"?  

And I think it is a balance, on one side, it pays to be aware of demands and try to have balance between demands and reinforcement, and try to pair with reinforcement, and all of those things.

On the other hand -- well -- even with that, I am still going to have to be "negative" or "a force" because -- it is part of my responsibility as a parent.  

But there's a balance for sure, and when demands are too high or not thought-out that can be a recipe for disaster, for sure.  But demands are also necessary and beneficial to a child.  

So it is a totally useful way of thinking about things, but it doesn't mean "oh we can never make an executive decision."  It's not that executive decisions are automatically bad, but they have to be extremely balanced with other interactions and experiences in the day, week, and month.  

That's my opinion.  

Edit:  also, when I was starting ABA I was told I was probably aversive in a lot of ways, from trying to interact in ways that came across as very demanding, and often wanting to do things like brush teeth, or say no to eating raw sugar, or not always letting it be his turn on the tv, etc.  Well -- none of this means I was doing anything bad!  But it was not working.  So it's like -- it doesn't mean to let him eat raw sugar, always watch what he wants on tv, or give up on brushing teeth!  But it means something needs to change as far as what the whole day, week, and month look like.  

Edit:  I did become a lot more aware of demands, for sure.  And there is a point where there is just a limit to how many demands there can be, and if that's the case, they have to be prioritized.  

Edited by Lecka
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On 7/11/2019 at 1:12 PM, Storygirl said:

We actually warned the psych who did his ASD evaluation of this, and she had us give him an incentive for participating in her sessions, and he was able to do all that she asked, but still with reluctant verbal participation.

 

Okay -- you have had success with an incentive.  Incentives are tricky but -- it's worth knowing.  A lot of times a big incentive is intended to get the tiniest bit of buy-in and then have the kid go "oh, maybe it wasn't so bad," or else to just do it once and then -- they have done it once.  It's probably not going to be able to make up for other shortcomings (maybe).  It's one part of things, though, and can be an important part.  

On 7/11/2019 at 1:12 PM, Storygirl said:

He never masters the skills he has been taught in previous therapy or uses them independently.

This is very common.  It is not that it means it's not possible.  But -- it is frequent that there is not enough planning for autism.  

What is an amount for other kids to master a skill -- may not be enough practice for a child with autism.

Generalizing is a known issue with autism.  

So these are things where -- it's important to actually look at "is the skill acquired."  "Is the skill being used."  "How much prompting is needed."  This is all ------ steps going from 1 to 4 or 5.  It's common for people not to actually look at all the steps for autism, because many kids don't need all those steps, and/or don't need as much at each step. I would hope someone working with autism would be aware of these issues.  I think you could ask about how they measure when goals are mastered, how they handle generalizing to "outside the therapy session."  But this is an issue that is discussed and people have answers -- it's not just you, it's common with autism.  

Where I am kind-of "negative Nancy" is that -- a lot of times it is just slow, slow, slow progress.  Or there's a little fast progress, and then it is slow, slow, slow progress.  

And it you are just happy that he is engaging with an adult and willing to let it take time, and buy into some theory about how it will help over a long period of time..... and he's not berating you in the car!  Then this might be fine with you.  

But if the promise is "he won't berate you in the car, and maybe over years there will be some progress," then you have got to have buy-in to make it worth your while, your effort, your placing other things lower to make this a higher priority, etc.  

And many people do find it worthwhile of being a high priority.  I don't have first-hand experience with this, but I do know that it is common for it to be up at the top for people.  

 

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On 7/11/2019 at 12:38 PM, Storygirl said:

My skepticism comes from the lack of progress over the past years, so far. For example, the psych included a list of things that she thinks he should work on, and some of the things on the list (interpreting body language, theory of mind, self advocacy, adjusting behavior to the situation, increasing empathy skills, and so on) are similar to goals he has already been working on with an SLP through the school, for years. He also expresses resistance to working with the SLP (though he did like the school SLP this past year) and dislikes social skills groups that he has been a part of.

Okay, I can feel like this.  I absolutely can.  I can feel like -- there is such a gap between where I would like things to be, or what age-level competence would be.  

But -- the truth is, my son HAS made a lot of progress.  He really has.  

I think here there are one of two things going on.

One, there really has not been progress.  Maybe because of your son's attitude, maybe because of the program used by the speech therapist, or -- maybe it is just a major, major area of difficulty for your son, and it would be slow going even with everything else perfect.  

Two, there really HAS been progress.  There is still a deficit, but there really HAS been progress.  

I think it is most likely -- whatever you do, you will have to look on the bright side and see progress if there is any progress to see, and be happy that that amount of progress has been made.  Because -- to have an outcome of "well none of these things are even issues now" is probably not realistic.  

But to have progress that is much better than "not" having that progress -- could be realistic.  

And maybe some programs might be more effective than what the speech therapists have done, or maybe the intensity level will be higher.  It can make a difference if a certain goal is more "on the side" or if it's the main goal.  Especially if there was more progress in speech therapy in some other area, maybe that was more the goal that was worked on (which could have been totally and completely appropriate ------- but just having a goal doesn't mean it was really emphasized, so in a way you may not know just how much certain goals have been addressed -- depending on how much you know about what exactly the speech therapist did to address theory of mind, and how that would be the same or different than a counselor, etc.)

And even then -- the truth is that for some of these things, it can be worth it to try again after a year or two or three, because kids can do better at an older age.  

So there are reasons to look on the bright side, for sure, even without expecting magical unicorns and rainbows.  

I have a hard time some times, committing to things, when part of me thinks there will never be "that much" of a result, but then I usually think -- it's still worth it.  

I do think autism is a pretty tough diagnosis, because there is a lot of "it's pervasive" to take in.  But things can still be worth it.

But thinking "things" are still worth it, doesn't mean that any specific thing is the thing to put effort into.  Edit:  but to be fair -- I think seeing a counselor familiar with autism is usually something people like to do.  It seems like it for sure.  

Edited by Lecka
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I do have overall thoughts of "is it pointless, is it worth the effort," though.  I do have thoughts like that for sure.  I think for me -- that's about everything.  It's not about picking to do one thing or something else.  

It's just overall -- wondering if effort is worthwhile, how much effort, etc.  

My son has been diagnosed long enough that I am not really "picking among different options" or "prioritizing among competing goals" -- which I do think  you are.  Just that he goes to school and is involved in activities are things that are worthwhile and worth weighing as priorities, because they are worthwhile and they are things that also take up time and effort.  

And I do think -- to some extent I have already tried things.  It's not that I haven't tried things yet or don't know about things yet.  

I think to some extent -- I do consider you to be newly diagnosed, and not to have tried some things.  I think it's pretty fair to try some things now with the diagnosis, that you haven't tried before in the same way, I do think it makes a difference.  But you don't have to do it on a fast timeline, for sure, and you might have other avenues (like school, if the school counselor might do anything now that you have the diagnosis and psychologist recommendations ------ if that would even be something you would want to do, etc).  Or seeing about if another person you already know might be able to tutor him on some things, etc.  Those are options.  You working with him with new autism materials might be an option.  

Any of those kinds of things I think -- with autism being added, I do think it makes a difference, than doing it without considering the autism side.  

But I do think there's also a certain point where -- maybe things aren't necessarily going to have am amazing outcome, but they are still worth doing, and it is okay to think about how much effort you want to put into things. 

There are parenting books or parent memoirs about autism, and a lot do talk about it being a long haul.  

I think there's this balance between things being a long haul, and still continuing to be invested in interventions year after year.  

They will also say you can't burn yourself out with therapy, and that is important, too.  

Anyway -- I do think it's a lot to take in, and -- your son is already taken care of in many, many ways, and you can take time to address things and find out more.  A lot of things are in place and you might add to it, is more how I see things, if that makes sense.  

You have already done a lot and have a lot in place, it's not like you are starting everything from scratch, I think.  

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I did have another idea — maybe you could take him out of school early?  I had forgotten about that but I did it for my older son’s OT and it worked out great!  But he was younger and I wasn’t concerned about what he was missing.  

But maybe if he had a study hall or something?  

 

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20 hours ago, Pen said:

given that he’s interested and asked for help with regard to anxiety, could you start with that?

maybe ask potential therapists what they could do to help with that and whether they could work in some other areas of concern too?  Because probably some anxiety is related to difficulties in the other areas even if your son doesn’t realize that .

I missed this. That's HUGE. Anxiety is not personality or a choice in autism. It's chemical. So you can run genetics and do biomedical or give him prescription meds. If he has ASKED for help, I would have his butt into a pdoc in a hot minute and get him on anxiety meds. Not my kid, but I'm just saying it may be astonishing what happens.

20 hours ago, Storygirl said:

I didn't detect anxiety in him about the social group, but it can be hard to tell. He doesn't express his feelings much and probably is not always aware, himself, when anxiety influences his behavior.  I think it is more that he doesn't like working on social skills, because it is hard and uncomfortable for him. The emotion he was expressing about the social skills group was anger. He was mad that I was having him go. During the actual sessions, he did not express negative feelings, as far as I know. He usually would not do that in a group setting and would just clam up and not participate.

It is normal for him to be angry at me, but not at the unrelated adults. Sometimes he will tell me, "I'm not going to do this. I'm going to tell them how stupid it is," and I will tell him to go ahead and express his thoughts to the leader/teacher/whomever. But he doesn't.

I don't know him. I'm just saying when my ds has the behaviors you were describing, the root is actually anxiety. Psychs have pointed that out and the behaviorist. Lowering anxiety (with chemicals, the chemical side of the anxiety) makes a RADICAL difference. 

20 hours ago, Storygirl said:

I didn't use an incentive or reward for those social group sessions.

I don't think a reward/motivator is the same as pairing. I didn't TELL him I was going to stop for donuts. I just did it. I was like oh look, happy day we're early and there's a donut shop! So I'm establishing that when he's with me great things happen. I didn't tell him or say oh when we get out we'll get donuts if you're good. I got them BEFORE. It was literally like I am the ANGEL OF ALL FUN and when you're with me life goes well and you love it. 

12 hours ago, Storygirl said:

She also said that he could perhaps try a social group again later on, after other therapy, so that aligns with what you are saying about needing 1:1 before small group.

Medication for the anxiety to get him more ready to interact with the 1:1 or group. I think the issue with 1:1 is the language deficits. I'm moving my ds to art therapy to see if that's another way to get there using less language. Art therapy before made a BIG impression on my ds. I just think we need another venue besides language, language, language.

17 hours ago, Pen said:

I just learned today that my son wasn’t telling me about a significant problem because he believed if he did I’d make him see a therapist...   might be that becomes yet another reason not express something being felt (or thought)...

That's a really interesting point. There comes an age where you switch to asking how they want to solve it... 

Anxiety is an elephant in the room. If that's going on and he's actually asking for help with it, that might be the place to start. And he's probably old enough to have that conversation of meds, CBT, both, biomedical, etc. In reality you don't care as long as it works and all can work. Then you can see what his next step can be.

I think it's easy to see potential. It's harder to triage and figure out what order to do it in. The language is going to make him shut down, so that to me is the danger point. Personally I don't find these people get how serious the language issues are. I think they can overestimate the dc's language abilities or their ability to cut through it. It's almost like they think talking AT someone will affect change.

Edited by PeterPan
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I have felt like — I like it when people have experience with kids who have less language, because then they definitely have strategies besides “talk to child.”

Or if they are talking, they are probably more used to checking for understanding or making sure to explain, etc.  

I think I have seen things where I feel like — they are making the effort to teach the vocabulary and teach the concepts very concretely — which I think is very appropriate — but it still has to connect and some things I think are too abstract for my son or too complex.  But then if they are going for concrete and teaching — I think to some extent they can teach a simpler and more concrete version, that is not as deep and abstract, but is still something.  I actually think this can be pretty good.  

I read an article that really made me feel better — about “marathon parents” often being kind-of cynical or difficult — but still “showing up.”  So I do think it’s okay to have some negative feelings.  It’s from ABA but I think it could just be generically about autism and trying to do whatever intervention.  https://www.iloveaba.com/2017/12/sprinter-vs-marathoner.html?m=1

I have heard of kids doing very well with anxiety medication, too.

But I also think — if that was coming across as “the thing to do” the psychologist would probably have made that recommendation.  

The thing is too — I think seeing a counselor would be taking a step in that possible direction?  I don’t know exactly how that works (how to get appointments, how to get referrals, etc,) but would seeing a counselor potentially be a way to find out more about that?  

Or is that more of a separate step/recommendation/referral?  I do not know.

If it is also a pathway to help with medications I think that seems pretty worthwhile apart from other things.  But I don’t actually know how that works, if you can get some medication feedback from the same person (even if they don’t prescribe or decide on dosages).  

I would be curious about that, I think it’s a good point.

It might also help with buy-in if it was the same person, or this person would be helpful in some way.  

If he does have interest or possible buy-in for anything, maybe it can be leveraged 😉

Edited by Lecka
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I have an impression that my cousin sees someone for medication check-ups who talks to him about things in a counselor-y way?  I’m not totally sure.  

He has a lot going on on just the medication management side right now.  It seems like he has to make changes fairly often.  

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Start with the anxiety because he thinks it is a problem.

Be very sceptical of a therapist who intends to brow-beat him into being more self assertive.

Their words say: "Be more assertive."
Their action say: "Submit to authority," and "You are an incorrect type of person who should not exist."
 

That kind of stuff doesn't reduce anyone's anxiety or make them more able to pass as a neurotypical person. Which, btw, is far more a courtesy to everyone else than it is a benefit to the autistic person themselves. 

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Someone posted this on another list I'm on, and I just want to toss it out. https://www.psychologytoday.com/us/blog/inspectrum/201907/when-john-met-jonah?fbclid=IwAR2rVSvgrJSfOwRdbgDiiHAPZ7DtbWD8dgN32ikc2iyomxUEQiSCK_MOtpc  I think I'm taking it for Story as encouragement that at some point YOU are the one best to say. You want advice, but you know him and know him deeply and are deeply attached to the consequences. 

I think it's good to listen to professional advice when it makes sense. If it doesn't quite jive with what you know of him, I think it means there are more pieces or more creative solutions or other options that professional might have suggested had they had more pieces. You have this lifetime of data and a professional has brief data. Our behaviorist makes suggestions but her suggestions have gotten BETTER as she has gotten to know ds. It's not like she's just prescient.

And I say again, I think these counselors and psychs radically underestimate the effect language issues have. If the person is struggling to make original expressive language at a certain level and you bog them down with emotion and complexity, the language can shut down. Does his language shut down? I have two kids whose language shuts down. I don't know every kid. I'm just saying it has started to bug me that practitioners are so clueless on this. 

I also agree with Rosie on how what is meant to be helpful encouragement to be self-assertive can turn into something kind of overwhelming. 

Fwiw I doubt Story has ANY dreams or goal at all of causing her ds to pass as NT, haha. I'm guessing she's more worried about hireability, whether he can comply with workplace demands, whether he can live in an independent living setting, whether he can have leisure skills socially, really basic things about quality of life. I think she totally accepts him as he is, but his raw, rough side makes it really hard for him to interact peaceable sometimes. These are really basic, reasonable, practical concerns. To me, unfortunately, he's not quite in the joyful quirky camp but more in the crusty stage. I've met kids who are super joyful on the spectrum. I just was hanging with a boy like that last night, super fun, super embracing of his spectrum, aware of his strengths and weaknesses, embracing life. And Story's ds is at a much harder place. And no one wants their dc unhappy or unable to have a good future. My ds can be crunchy like that, challenging. It's that additional layer of hard.

Fwiw, I don't *know* what can improve with the anxiety treatment. It's a really interesting question. Like Kbutton says, sometimes better living through chemistry is the way to go. My ds softens with pairing and interaction. The more interaction the better, eats it up. But calming his body was HUGE. We probably have more to go, sigh. So what I'm calling pairing and interaction is what that psych is calling ABA in the report. When the psych says do ABA, that's what it would be, forming meaningful relationships and putting in time that helps him learn skills in a progressive, intentional, naturalistic way. I think meaningful relationships are enriching. Like we can say oh ABA is awful and get caught up in debates, but at some point it's silly. We're paying someone to have an intentional, meaningful relationship with a dc who maybe isn't doing so hot at having that. It's all good. Love is good and more love and more interaction is more good in my book. It's just let's go UP. But I think even that, I'd probably get that anxiety treatment going first. My ds is SO much easier for someone to come in and work with since we got his body calmed down. He just wasn't as prepared to embrace the opportunity before.

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You guys are awesome -- thanks! It's after midnight now, and I've been away from the computer all day, and it's too late for me to process everything, so I will read it all again and make my own comments tomorrow (hopefully).

One of the recommendations was to add a mood stabilizer to his med regime. The psych said that it may help him to get to a place where he is willing to work through things. I gave a copy of her report to our pediatrician with a note asking whether she wants us to make an appointment with her first to discuss, or whether she wants to refer us to a psychiatrist, and I haven't heard back from her yet.

Pen asked if he could learn about the benefits of counseling for anxiety, and it's a good question. It would perhaps be good for him to see that it is not just something that I am saying. But he has reading comprehension difficulties and doesn't generally learn through reading. I could probably find something for him to read that is at a kind of introductory level, and that might give him another way to think about it.

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We had a couple of interesting interactions today. DS is doing a job readiness training program through our state department of vocational rehabilitation, and it started this Monday. He did NOT want to go. On Sunday and Monday, as the starting time approached, he was rude to me about it and accused me of forcing him to do things against his will and insisted that he would not miss band practice to go to it.... and on and on.

It, of course, made me feel sad to be cast as the bad guy for doing my best to help him. I'm so tired of that.

Anyway, he went. And at the end of the day, when I picked him up, he said that he liked it! I was shocked, really, He only said a sentence or two about it and then wouldn't say more, because he wanted to listen to music instead of talking, but I was glad.

Today was the third day (it is MWF from 10-3:30), and I had said this morning that when he got in the car at the end of the day, that I would like to hear more about how his day went when I picked him up. And he willing talked to me for a few minutes this afternoon, so that was good! He said he is still liking the program, and I mentioned that sometimes we have to give things a chance, even when we feel like we don't want to, and then we can find that we like it, after all.

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11 hours ago, Lecka said:

https://www.socialthinking.com/Articles?name=i-dont-care-protective-walls

I think this is a good article about "when kids say they don't care."  

Ha!! Thanks!! That article describes DS pretty well, including his desire to be cool, his attraction to and use of negative behavior, and his use of humor.

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30 minutes ago, Storygirl said:

One of the recommendations was to add a mood stabilizer to his med regime. The psych said that it may help him to get to a place where he is willing to work through things. I gave a copy of her report to our pediatrician with a note asking whether she wants us to make an appointment with her first to discuss, or whether she wants to refer us to a psychiatrist, and I haven't heard back from her yet.

 

That makes sense to try.

30 minutes ago, Storygirl said:

Pen asked if he could learn about the benefits of counseling for anxiety, and it's a good question. It would perhaps be good for him to see that it is not just something that I am saying. But he has reading comprehension difficulties and doesn't generally learn through reading. I could probably find something for him to read that is at a kind of introductory level, and that might give him another way to think about it.

 

If he gets medicine, maybe the person prescribing the medication might say something about trying some therapy too.

I wonder if something like EMDR which doesn’t require as much active doing as, say, CBT, could help? 

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42 minutes ago, Storygirl said:

Anyway, he went. And at the end of the day, when I picked him up, he said that he liked it! I was shocked, really, He only said a sentence or two about it and then wouldn't say more, because he wanted to listen to music instead of talking, but I was glad.

I'm really happy he did so well! That tells you (or seems to me) the support was high enough that he could succeed there. That's HUGE, wow. My ds needs support to do well in settings, maybe even significant support, and it affects whether he does well in the setting or not even more than what the actual activity is. So that's just fabulous that he did well.

Again, the behaviors you described are same as before, same pattern, where he's dosing you and letting out on you because of his anxiety with starting a new thing. So then look at how he got through that, worked so hard, gets back, and you want to talk debrief and where is his language? He's shutting down, nothing left to give, language gone. That's the language piece of his disability. And that's where I'm saying he has a long day in school, is already tired, then walks into someone saying here let's talk hard stuff and that's going to be hard. At least that's how my kids are. They need to be fresh and for my ds language isn't necessarily how he's going to get there. 

46 minutes ago, Storygirl said:

that I would like to hear more about how his day went when I picked him up.

That's interesting. It sounds like he's trying really hard to please you. Could you talk about it LATER? Like the next day? Or maybe after he's had a couple hours to recover? It would at least be a way to see. But I think telling him ahead of time what you're going to want to know is a solid strategy. Then he's watching and thinking, like what his favorite things were or what he did or whatever. The heads-up is a good strategy.

1 hour ago, Storygirl said:

the benefits of counseling for anxiety

It might feel more in reach to him with some meds in his system.

1 hour ago, Storygirl said:

One of the recommendations was to add a mood stabilizer to his med regime.

So it sounds like the psych saw it too. With my ds the mindful changes weren't within reach till we got his body under control. And not to be too dubious, but it took some time too. Like it's not like we put him on 5HTP and the other stabilizers and then had success with a psych. Actually he got kicked out, lol. He's been on the supplements now about 18 months (ish), and at this point his normal has reset to the point where he EXPECTS to be calm and chilled. We were just with my family, and people were commenting how radically he has improved from January to July. There was a growth spurt there, but I think it's the cumulative effect of time being more stable plus his own expectations of himself increasing. Given that your ds in some ways makes efforts to stretch to please you, you may find this enhances when his new normal makes it easier for him to do that. It might take some time to get there, to re-establish what he expects of himself. It's not something you intellectually get to but a pattern of a new normal that becomes his expectation. You don't even know how good that could be. It might be surprising. For us the supplements work quickly but the reseting of his own expectation for himself has taken time.

 

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2 hours ago, PeterPan said:

Fwiw I doubt Story has ANY dreams or goal at all of causing her ds to pass as NT, haha. I'm guessing she's more worried about hireability, whether he can comply with workplace demands, whether he can live in an independent living setting, whether he can have leisure skills socially, really basic things about quality of life. I think she totally accepts him as he is, but his raw, rough side makes it really hard for him to interact peaceable sometimes. These are really basic, reasonable, practical concerns. To me, unfortunately, he's not quite in the joyful quirky camp but more in the crusty stage. I've met kids who are super joyful on the spectrum. I just was hanging with a boy like that last night, super fun, super embracing of his spectrum, aware of his strengths and weaknesses, embracing life. And Story's ds is at a much harder place. And no one wants their dc unhappy or unable to have a good future. My ds can be crunchy like that, challenging. It's that additional layer of hard.

 

Those things *are* about passing as NT. But this is not an autism issue. Every thinking parent wonders where to preach that line between "you must conform" and "be yourself."

I'm not unaware of the challenges. I'm just about drowning in them myself.

I wasn't accusing Story of this anyway. I did read her posts. I'm validating her concerns about pursuing therapy. Without knowing her son, I'd guess that there's a much higher chance of him fixing his problems if he's in a setting where he doesn't have to demonstrate compliance like a trick pony.

What I do is narrate life. It's just like when they're tots and you walk down the street pointing out butterflies, snails and lavender plants, except it is narrating the social and emotional world instead of physical world. Anxiety is hugely debilitating. You may be surprised how many of his perceived problems with self awareness and flexible thinking dry up if the stress anxiety is under control. Before trying CBT, talk to older autistic people. I won't go anywhere near it myself and wouldn't let my kid (if she's autistic, she's "higher functioning" than I am due to a different trauma history) anywhere near it if I had a choice. Perhaps others have found it a positive experience, I don't know.

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4 hours ago, PeterPan said:

don't think a reward/motivator is the same as pairing. I didn't TELL him I was going to stop for donuts. I just did it. I was like oh look, happy day we're early and there's a donut shop! So I'm establishing that when he's with me great things happen. I didn't tell him or say oh when we get out we'll get donuts if you're good. I got them BEFORE. It was literally like I am the ANGEL OF ALL FUN and when you're with me life goes well and you love it. 

"Pairing" is short for "pairing with reinforcement."  It means pairing one thing, that is neutral or not preferred, with another thing that is preferred, by doing them together so they happen together.  

So you can pair together a lot of different things.  

When it's used, most of the time it is used as shorthand for -- an adult building rapport or a positive relationship with a child.  

But it's the same principle as pairing any two things together.  

So -- I am not pairing myself with reinforcement when I do things around therapy appointments, when I do surprise things or known-things-that-happen.  I am trying to pair the therapy appointment with reinforcement, to try to make it more likely my son has a good attitude going into therapy.  

It is true -- it would be a different decision to do more of an "if you do well.... then...." kind of thing.  But a lot of times its possible to set the requirement so low that the child will definitely meet it and "contact the reinforcement."  Or -- a combination of setting the requirement so low, and also doing other strategies to try to get things to go well, can combine into providing the reinforcement and the child contacting the reinforcement.  

I have asked the question of:  does it matter if the child knows?  And I was told it doesn't matter, contacting the reinforcement is the main thing.  

But anyway ------ I do totally agree, it can be a lot better to just "happen" to do some special, cool thing, without it being "because you did this, now you get this."  It depends on the situation.  I do both :)  

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2 hours ago, Storygirl said:

One of the recommendations was to add a mood stabilizer to his med regime. The psych said that it may help him to get to a place where he is willing to work through things. I gave a copy of her report to our pediatrician with a note asking whether she wants us to make an appointment with her first to discuss, or whether she wants to refer us to a psychiatrist, and I haven't heard back from her yet.

I think I would prioritize this over finding a counselor.  

But it does make me wonder -- could there be waiting lists for a counselor?  If so you might get on a list and then have time to wait and decide what you want to do anyway :)  And then maybe just get on the list with every name you get.  

Rhetorical question:  did the psychologist mention anxiety?  Are there things on your long list relating to anxiety?  

I would never NOT say to do anxiety things.  

But -- if you have just been to a psychologist and you have a list of recommendations and none of the top ones are about anxiety ------ then I think it can be a lower priority, or it can be part of one of the other ones.  Maybe the recommendation for a counselor is meant to include "address possible anxiety."  

I think ------ if the "main" issue was anxiety, the psychologist would say so.  

If it's going along with some other things, then it is part of a group of things, and I think that makes it more complicated and changes specifics about how to address it.  

I'm not totally sure but it's my impression.

I think too, it's a cliché but I think sometimes you just have to try medication and see what happens.  

This is a really separate thing, but --------- for my cousin, my understanding is that at this point, the primary issue is mental health and medication management and stability, and autism is on the side.  And I don't think this is uncommon.  I have no idea how common it is, I just have heard of it.  But -- I keep my ear open for it, and then parents have a way of meeting other parents, so just because I have met people and my mom and aunt have met people ------- it's hard to know if that means "it's a lot of people" or if it means "we are in the right place to meet people."  

This is another rhetorical question:  what does the psychologist mean by ABA?  My top two guesses would honestly be -- does this mean to consider doing a reinforcement system (with earning points and earning rewards, or something along those lines)?  Or does it mean to look for a counselor who also has some experience with autism?  That might have nothing to do with having some kind of reinforcement system, and just mean -- oh, the counselor can bring in some ABA strategies as needed.  It is vague enough that pp is picturing pairing with aides, and I am picturing "maybe a reinforcement system (for behavior management)."  I would be curious what the psychologist is picturing, or if it's left open to a couple of different options.  Or if its more -- see a therapist and then see what that person recommends.     

Or maybe it's more something where -- because she wrote it on the piece of paper, now your insurance will cover it if you need it?  I have asked about something before, and that was basically the answer ------ that it wasn't that they strongly, strongly recommended it, but if I wanted to do it, I needed it written on the piece of paper or insurance would not pay.  

This gets into ------ do you already have some thought-out recommendations from the psychologist?  Or do you have a list of options for you to figure out, but since they are down on the "psychologist recommendation list" you can get insurance coverage or show it to school?  

I have had an impression like you have gotten actionable recommendations from the psychologist, and then -- I think that matters more than what it "might" be, at first, because autism can be so different.  But then there's always time to find out more and add things.  

But I think to a great extent -- sometimes there is trying medication and seeing what happens.  

I think it can sound strange ------ but I don't think it is so different than any other variety of "let's try this and see what happens."  I think there is inevitably a lot of "let's try this and see what happens" whether that means trying medication, OT, a counselor, ABA, speech therapy, other therapy, etc.  There is always some logic of what to try, and making an informed decision of what is likely to help and make sense...… and then there is always trying it and seeing what happens.  

I think it really can help to know what medication someone is doing well with...… it is one of those things where it seems backwards, but I think it can just provide helpful information in practice.  Because -- not everyone does respond to medications in the same way, so then how someone responds to a medication IS providing information.  

It is great the job training is going well :)  I think that I would not take a chance on messing that up by adding in some new (potentially disruptive) therapy.  Especially when it might just mean waiting a few months (and maybe could even take that long to set up an appointment).  

It is so interesting to see how everybody has a different idea on him not being as talkative.  I definitely have a take of it being narrative language.  My son can have trouble with recalling his day, and it is narrative language.  

There is this theory (and I doubt this applies here, but it is interesting anyway) where if you don't have narrative language or internal language to some extent, you go through the day and don't mentally track what you do in an order.  You go through the day and you remember it in a kind-of hazy way, or out of order.  You don't remember it in a clear order, because you aren't using language (inside your head) to organize your thoughts about your day or think anything like "now I am doing such-and-such" and labeling events as they happen, or thinking in terms of "now it's time for lunch" and then that also is using language to help organize your thoughts as they happen and organize your day as it happens.  And then this is part of what is needed to recall the day.  

Then it is easier to get that sense after a few days, of what the routine is, and not be overwhelmed by it being new, and do the "gestalt processing" with more experience of the routine and time to process it...…..

Anyway, it's good he told you today :)

Ways to support it with questions can be to ask more specific questions like "what did you do first" or "did you do x" that he probably did (like eating).  I think it's a great idea to say in the morning, what you might be curious about.  It is a good idea for me :)  

I have also used strategies of making sure to narrate things through the day so he has heard the language and heard events labelled (and this teaches him to label them), and to review events of the day as they happen -- like saying "this morning we did blah blah, when it is lunch time....."  

I think also -- it's pretty normal to have a hard time doing anything new or for the first time, with autism.  That is very normal.  I think -- don't take it personally.  Also, when it's possible, or when it's predictable you know it's the kind of thing that may be a new thing for him, a lot of people preview with a social story or with a youtube video.  There are youtube videos for a lot of things and a lot of places.  Or google image.  I am not as much a person who does social stories, but they are a recommendation.  

I also don't know if he has a good sense of time -- but if he doesn't, then pointing out times can help him know "okay I will get picked up at 3:00, this is 5 hours long, we will probably get some kind of food or break around 12:00" can help a lot with reducing anxiety around not knowing what to expect.  Or write it down for him if he can't remember that kind of thing easily.  

I have seen things talk about practical anxiety or social anxiety.  The things I am mentioning are more "practical" anxiety because they are more about ------ not being sure what to expect, in ways that a lot of people would just now what to expect.  

Then social anxiety is more about the social interaction part.  

My son is more on the practical side.  

It is supposed to be that with more social awareness, there is more social anxiety.  And then with less sense of what to expect is going to happen, and what to expect, and being able to predict some predictable things, that leads to more practical anxiety.  That is where I know more strategies.  

 

 

 

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Quote

What I do is narrate life. It's just like when they're tots and you walk down the street pointing out butterflies, snails and lavender plants, except it is narrating the social and emotional world instead of physical world.

 

Excellent idea!

Quote

Anxiety is hugely debilitating. You may be surprised how many of his perceived problems with self awareness and flexible thinking dry up if the stress anxiety is under control.

 

Agree!

Quote

Before trying CBT, talk to older autistic people. I won't go anywhere near it myself and wouldn't let my kid (if she's autistic, she's "higher functioning" than I am due to a different trauma history) anywhere near it if I had a choice. Perhaps others have found it a positive experience, I don't know.

 

Do you really mean CBT - Cognitive Behavior Therapy?   

 

I’m thinking you probably mean ABA which I’ve met people on the spectrum who say it’s been emotionally abusive. 

Link with some discussion: 

 

Nm — links not working for me. Nor multi quote...   

Edited by Pen
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@storygirl

Several book suggestions related to anxiety and related problems:  

Your Ds could probably handle this book  intended for children but adults like it too: 

Alphabreaths: The ABCs of Mindful Breathing https://www.amazon.com/dp/1683641973/ref=cm_sw_r_cp_api_i_..BkDbW667GEH

Same author has a book specific to dealing with anxiety in teens, via mindfulness practices... written directly to the teen, but it might be too hard for your Ds? 

And this might interest you as mom:

Growing Up Mindful: Essential Practices to Help Children, Teens, and Families Find Balance, Calm, and Resilience https://www.amazon.com/dp/1622035909/ref=cm_sw_r_cp_api_i_TbCkDbWS465BZGrowing Up Mindful: Essential Practices to Help Children, Teens, and Families Find Balance, Calm, and Resilience https://www.amazon.com/dp/1622035909/ref=cm_sw_r_cp_api_i_TbCkDbWS465BZ

 

 

you might find either of these books helpful to read yourself: 

(Relating to dealing with ocd, anxiety or other such problems via a system akin to CBT but I think easier) 

You Are Not Your Brain: The 4-Step Solution for Changing Bad Habits, Ending Unhealthy Thinking, and Taki ng Control of Your Life https://www.amazon.com/dp/B004XFYRMA/ref=cm_sw_r_cp_api_i_v9BkDb7GQ5MS6

Brain Lock: Free Yourself from Obsessive-Compulsive Behavior https://www.amazon.com/dp/B01CY3A8V6/ref=cm_sw_r_cp_api_i_W6BkDbMXDY8DA

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Also you might want to find @chocolate-chip chooky ‘s thread about anxiety/OCD and her recent report back that Inositol has been helping her dd.  She was afraid to try some of the other supplements like NAC iirc...

 

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7 hours ago, Lecka said:

But anyway ------ I do totally agree, it can be a lot better to just "happen" to do some special, cool thing, without it being "because you did this, now you get this."  It depends on the situation.  I do both :)  

Fwiw, if a thing is too hard (too stressful, too big a reach, made too challenging by an overzealous "professional", etc.), it doesn't matter what great things were coming afterward. So I'm back to it working really well with my ds to make his life go well. If he gets in the car with me, who knows what great things might happen. Getting in the car, going there without pushback, worrying, stuff coming out of his mouth has been an issue. So I'm going to be a lot more on the front end, get him in a good mood, just make life good, so that the thing we go to is this incidental blip. 

I run into more oblivious, overzealous therapists than anything. And it's not one place. It's over and over and over. The IEP system promotes this disconnected cannon approach to therapy where you show up and they shoot at your kid. It's really tiring.

3 hours ago, Pen said:

@chocolate-chip chooky ‘s thread about anxiety/OCD and her recent report back that Inositol

I'm having a brain blip. Is inositol a methyl donor? I'm trying to remember why I didn't pursue it.

Fwiw, I think Story is dealing with a dc with unknown mix. Like you don't know if there's fetal alcohol exposure, COMT defects, VDR defects, on and on. So I think it's really shooting in the dark to say try this or that. I'm ALL FOR biomedical, sure, absolutely. But I'm just saying it's shooting in the dark if you don't run genetics and have no clue about the parents' issues, exposures he may have had, etc. He's irritable, anxious, on and on, but what is the exact chemical and brain and experience mix leading to that? It could vary.

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Self-advocacy is a huge thing at this age, so this would be the time to say I can give you some options for the anxiety (CBT, working on interoception, meds, supplements) and see what the dc wants. There's not really a wrong way to start or even a preferred. It's more just giving him a chance to say (if he has any opinions on it), what he would like to try first. Like if he has felt guilt-tripped by people telling him he could cognitive and breathe it better, or if his own awareness is that he wants something beyond that, then he should be able to give voice to that. And if he doesn't have an opinion/preference, then I'd go with what hasn't been done yet or with what you think will get you the farthest.

To me personally, I think something biomedical or chemical opens the doors for everything else to work well. Like if you get 80% of the way with the chemistry, you get the remaining 20% with the cognitive strategies. And maybe some people are like no my kid could get 50 or 70% of the way there with cognitive, great. 

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Rosie, I appreciate your comments, even though I cannot "like" them.

One of the challenges that I am anticipating may happen with employment is that his autism is hidden. By "hidden" I mean that even professional psychologists have in the past told me that they did not suspect autism after working with him (but not running testing). So he does tend to pass for NT, and the traits that people will notice -- gruff and/or limited communication, difficulty understanding and carrying out some kinds of instructions, EF issues, and so on -- can come across as noncompliance or incompetence or anti social, which may limit or endanger his employment. Also, he won't do well in job interviews if he shuts down and can't answer questions, so getting hired to begin with may be tricky.

And then the other part of his communication is that his verbal skills are actually his strongest cognitive skills (average on testing, whereas nonverbal scores are lower), and he is actually quite chatty at home when he is comfortable and can talk about his own interests.

So I would hope that he can improve his expressive communication, so that he can actually show some of his intellect and skills to employers.

There is then the related issue, which is common for those with the nonverbal learning profile, of "illusion of competence." Where the higher verbal skills can make the employee come across as competent, but then lower performance ability results in him underachieving. Which is also not viewed well by employers.

Instead of him passing as NT, I actually think that if he shares with employers that he is on the spectrum, he may gain more understanding and have higher success in the workplace. But there are really valid reasons that people don't want to reveal that they have ASD, as well, so it's something that he will need to work out.

I'm very thankful that he qualified for this job training program, because its purpose is to help teens work through these things as they find their first jobs and then make goals to work toward for future employment. I want him to be able to have work that will be meaningful for him and pay his bills. Or at least pay some of his bills, because I realize it may be that he ends up underemployed and that we will need to provide some level of continuing financial support.

My other big goal is for him to be able to have healthy relationships with people, which has it's own layers of things to work on.

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I think it depends what the psychologist has said.  I think sometimes there is already a known place to start. 

But I agree — sometimes it is just trying things to see what works out.  

I agree too, “demands too high” is always going to be a problem.  It can just be hard to tell sometimes, sigh.  

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Ok, yeah, I just googled. Inositol is a serious methyl donor, right up there with sam-E. I took sam-E one time and had out of body experiences, like I was literally coming out of my skin. It was the most astonishingly intense, uncomfortable thing and my dd (who has an MTHFR defect and takes it with great success) was like oh my lands please never take that again. So only for that reason, that when it's wrong it's VERY wrong, you might be well-advised to run genetics first. I mean, you can guess. And who knows, guessing might work out well. They claim online that 90% of people with ASD have an MTHFR defect. (I've not seen stats on the reverse.) But I have MTHFR + COMT defects, and for me something like that could be really dangerous. My ds has only the COMT, no MTHFR, go figure. Apparently I'm not generous with my genes.

Takes just a few weeks to get back the results on genetics. You can also use a pdoc who runs genetic testing to screen for which psychotropics. 

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