Therapy/counseling for teen with high functioning autism

[Lecka]

I like your goals!  Having goals like that really can help in making decisions.  

[Lecka]

My goals are increasing language use, increasing comfort in social situations (as shown by engagement or language use) and increasing basic math and reading to where they are good enough for a lot of things, and as good as possible.  

Then I do have other goals, but these are the top ones right now.  

[PeterPan]

4 minutes ago, Storygirl said:

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.

ABA (umbrella ABA, as in paired relationships with a paid person working on skills in a naturalistic way, has been the BEST THING for my ds with improving relationships. Well that and getting his chemical body under control so he can actually do the things and have a chance. 

Like at the lake with me this week, he came in, was getting silly/elevated, and hit me, so I hit him back (appropriately, gently). He was really tiffed, but he needs that feedback and can finally STAY CALM enough to receive it. Same thing when he was squirting kids in the face and wouldn't stop when they said stop. I went in and squirted him super hard and didn't stop when he said stop. And I'm like "Oh, you mean stop means stop???" LOL So then he was angry but could take a break and deal with his learning experience. Before, we couldn't pushback like that because it wasn't safe. 

When you get the body under control, they can receive the good instruction they're being given and actually learn from it.

[Storygirl]

35 minutes ago, PeterPan said:

 

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.

For those who don't know, DS15 was adopted from Guatemala as an infant. So, yes, true, we can't know anything about his genetics based on family history, because we don't know family history. I have considered the idea of running genetics on my kids (all adopted) but would want to do it anonymously. It's on my radar, but I have not pursued it yet.

[PeterPan]

9 minutes ago, Storygirl said:

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 are three angles to that. 

-anxiety

-ABA/autism/in the shell

-narrative language and expressive language

So you think about all the factors affecting his ability to do that and you see it's actually multiple people. It would be interesting to see what would happen with his comfort communicating when the anxiety is down. Then you'd have the paired relationships where they, of course, work on just getting more language out. ABA can be really powerful for that in a very naturalistic, comfortable way. And then you'd have the question of private SLP work. I'm not saying I endorse/encourage that. Language is a bottomless pit and at some point you will cut your losses and adapt. With my ds, I'm pretty aware of that. I'll get somewhere, but I'm not going to get everything, no matter how hard I work. I will have some functional language goals, like really specific things.

For your ds you might think through language goals and think about some triage there. 

-social greetings

-chit chat

-being able to summarize what you did to the employer (I fixed the such and such that was broken. Now the other thing needs to be ordered.)

-texting

-self-advocacy

-conversations about areas of interest

-conversations in areas you're NOT interested in

-being able to watch/follow a movie

I don't know, keep going. I'm lengthening the steps there, and you can see where maybe some are just higher priority. For some jobs it might not be a huge deal to be pretty quiet. I have had chatty repair people and the quiet ones are better. I always wonder if I'm paying for their chatting, lol. 

I think it's ok not to win completely on language, or maybe I'm finding it's inevitable. I don't know, I was with my whole family this week, and those dynamic conversations with 20 people are really hard. They're just complex. It's easier to win on a couple really finite things than it is to win on a bigger level. I don't know that it's completely fixable when the disability is that significant.

I really like RDI btw and sometimes you can get an ABA person to work on those nonverbals. They go together, the conversation and the nonverbals. I think in the more dynamic, larger settings the nonverbals are what makes it so hard. They're very complex.

[PeterPan]

6 minutes ago, Storygirl said:

would want to do it anonymously.

Ok, I just realized something. Because he's adopted, doing genetics and ticking the box to let the results get SHARED could be kinda eyepopping. I think you don't have to do that. I think when we did 23andme we could select the level of family tree type linkage and keep it totally private. You could see. The data is SO useful.

[Storygirl]

1 minute ago, PeterPan said:

Ok, I just realized something. Because he's adopted, doing genetics and ticking the box to let the results get SHARED could be kinda eyepopping. I think you don't have to do that. I think when we did 23andme we could select the level of family tree type linkage and keep it totally private. You could see. The data is SO useful.

Yes, there are pros and cons. Whether he wants to try to connect with biological relatives one day is a big issue he will need to decide for himself. I would not want to open up avenues for that without it being his choice, and right now, he is not showing any interest at all. Some of my other kids have started to ask a few questions about themselves, though.

And I'm also unsure about having his genetic information available for insurance companies and other medical professionals. To me, the whole arena of genetic testing is still too new and  unpredictable when it comes to how our data may be used in ways we would not like. So I'm on the very cautious end of this.

If I do it, I would create a pseudonym and have the results sent somewhere other than our own address. I've contemplated it.

[Storygirl]

There are some great questions for me to ponder inside some of your posts. I'm going to come back later and pull some of them out, so that I can think and talk through them. I think through things better when I am writing (and speaking, but mostly writing), so this is all very helpful to me.

[PeterPan]

7 minutes ago, Storygirl said:

If I do it, I would create a pseudonym and have the results sent somewhere other than our own address. I've contemplated it.

Ok, so hospital genetic testing is usually pretty tight (looking for specific things) unless they're doing whole exome for some reason. We did 23andme, and they don't mail any results. So you would make an account, use any name you want, keep the privacy settings tight, and access it yourself. I think it would probably be reasonable to tell him you're running genetics for some medically related things that might help you target his anxiety and how he feels. I don't think I'd disclose to him that they do family tree stuff and I wouldn't probably tell him what company you're using. And you could make an email new for that (your ISP probably gives you 10 or something or use a gmail) so that he can't find it and hack in. 

There's actually some pretty cool stuff in the genetics 23andme will run, like things that tell how you metabolize alcohol, etc. I'm able to tell my kids don't do xyz, you're more likely to become addicted, etc. So it can be good on more levels. 

[Pen]

@PeterPan I use myo-Inositol which I have not seen any indication that it is a methyl donor. (There is a form called methyl-Inositol also.)  which were you looking up? 

[Pen]

https://www.ncbi.nlm.nih.gov/pubmed/11386498/

re Inositol and panic attacks double blind controlled study

[Pen]

It does not look like it has a methyl group ...  but ...?

https://en.wikipedia.org/wiki/Inositol

 

————

https://www.ncbi.nlm.nih.gov/pubmed/11386498/

re Inositol and panic attacks double blind controlled study

[chocolate-chip chooky]

@Pen mentioned me, so I'm popping in to say hi 🙂 

Our situation is quite different to yours, but I'm very happy to tell you about our experiences using inositol if you're interested.

We're not dealing with ASD or oppositional behaviours. For us, it's OCD, which falls under the anxiety umbrella. Our experience with inositol has been very positive so far.

[Pen]

2 hours ago, chocolate-chip chooky said:

@Pen mentioned me, so I'm popping in to say hi 🙂 

Our situation is quite different to yours, but I'm very happy to tell you about our experiences using inositol if you're interested.

We're not dealing with ASD or oppositional behaviours. For us, it's OCD, which falls under the anxiety umbrella. Our experience with inositol has been very positive so far.

 

Just to say, @Storygirl ‘s Son is apparently having anxiety feelings and requested help with that.  (Research I’ve seen indicates that Inositol doesn’t help autism itself, but does help alleviate anxiety in people on the spectrum.) 

[PeterPan]

5 hours ago, Pen said:

@PeterPan I use myo-Inositol which I have not seen any indication that it is a methyl donor. (There is a form called methyl-Inositol also.)  which were you looking up? 

I'm looking. I just did really basic googlefu, nothing fancy. So I didn't realize inositol is vitamin B8. That's kind of intriguing. I'm looking into those forms. The sites that were saying inositol is a methyl donor don't specify form, so it makes sense it could vary. 

[Rosie_0801]

11 hours ago, Pen said:

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. 

 

Maybe they are the same thing and it's a dialect difference? I don't have time to check atm.

My experience of therapy has been almost entirely abusive. Dd's first therapist was good. Her current is abusive. They're not all bad, but they're probably all bad for me. I have to therapy myself. 🙂

[Rosie_0801]

7 hours ago, Storygirl said:

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.

 

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.

 

1. Yes, this will happen. But he is male, which will help. Do make sure he understands that the ways society sucks aren't a flaw of his. We live in a world where job adverts want bubbly extroverts for solitary jobs. How can we cater to that kind of stupid? I never thought I'd see the day I'd be encouraging any male to express male privilege, but with my young Aspie bloke friend, I do!

2. Healthy relationships with whom?

[Pen]

3 hours ago, Rosie_0801 said:

 

Maybe they are the same thing and it's a dialect difference? I don't have time to check atm.

 

Not the same in USA.  Though two overlap areas I’m aware of to follow.

CBT is used with people in general— not particularly with ASD.  People would decide for themselves what they want to work on, and can, in fact, do CBT to some degree without a therapist— using books and so on to guide them.  Anxiety would be a thing often dealt with using CBT.  There are CBT variants for really severe or complex situations like PTSD.  

 

ABA (I forgot what it stands for) is almost entirely used with ASD.  

What is being worked on tend to be goals of others for the person with ASD.  Possibly this is often because the ASD person isn’t verbal enough to articulate personal goals. But language, eye contact, etc., could be worked on with ABA.

 

Where to me they seem to overlap can be

1) exposure to things that bother a person.  So, for example, someone with fear of flying in plane might use CBT to rank fears related to flying to work on being able to handle that... maybe look at picture of plane, watch video of plane etc. step by step, etc to hardest ranked things like get on plane that isn’t going anywhere, actually take a plane...

 

ABA — as explained to me , I don’t have personal knowledge —might be used in what seems at first superficially similar to get used to disturbing things, but the things are chosen by others usually to be worked on, and the method tends to be flooding exposure to an aversive.  Llike if scratchy clothes bother, put on extremely scratchy clothes, all wool or something, to try to build tolerance to clothes that np people don’t think are scratchy.  Or if sounds and sights and smells of a store are overstimulating, go to a big mall when it’s extra crowded to try to achieve comfort level with it a “normal” not so crowded store. 

CBT tends to have both the self direction aspect (like someone feels “I want to be able to take a plane so I can get a job involving travel” versus for ABA it seems more to be an external drive, “Jenny needs to be able to cope with stores without a meltdown so her mom can go shopping for the family.”

2) use of analyzing antecedent, belief/behavior, consequence 

ABA afaik seems to utilize more external operant conditioning.  To get a different behavior which is then rewarded (or not and in some cases punished) by a consequence.

 

CBT utilizes a lot of personal thought interruptions —  catching oneself about to think or having just thought something that tends to cause a problem, one internally would work on change of ones own habitual belief (or behavior) to get a different consequence for oneself...

 

 

Eta: CBT would need the autistic person to be high functioning, but thread title says he is.  

http://www.researchautism.net/interventions/15/cognitive-behavioural-therapy-and-autism

ABA has been used with completely non verbal autistic people, which I think would be impossible with CBT.

https://en.wikipedia.org/wiki/Applied_behavior_analysis

 

 

At an extreme end of operant conditioning I’ve heard that clickers (as for dolphin and dog training) has been used to get non verbal autistic children able to talk

 

Quote

My experience of therapy has been almost entirely abusive. Dd's first therapist was good. Her current is abusive. They're not all bad, but they're probably all bad for me. I have to therapy myself. 🙂

 

We had similar with ds having an excellent therapist when he was little. Then a couple of years ago age 14-15, unfortunately he had a bad one...  which I feel bad about having felt desperate to get him to see someone and not having waited for a more highly recommended person.  

I think we are having trouble now that stems from that. 

Edited July 14, 2019 by Pen

[Pen]

5 hours ago, PeterPan said:

I'm looking. I just did really basic googlefu, nothing fancy. So I didn't realize inositol is vitamin B8. That's kind of intriguing. I'm looking into those forms. The sites that were saying inositol is a methyl donor don't specify form, so it makes sense it could vary. 

 

It’s basically a sugar (that can be made in body from glucose) that’s prevalent (or should be) in nerve tissue including particularly the brain, spinal cord... helps transmit signals properly and is needed for neurotransmitter synthesis as I understand it.  Also iirc somehow relates to myelin.  It seems not only to have been helpful with my anxiety but also I notice improved physical balance with it. 

[Storygirl]

5 hours ago, Rosie_0801 said:

 

 

2. Healthy relationships with whom?

Everyone. Sigh.

He gets along well enough with peers right now. Kind of. He has friends at school, but there are some issues, because he has chosen some friends who are making some bad decisions and teaching him some things that we have to re-teach or correct at home. Like racism and making fun of people with disabilities and ideas about girls, and so on. It's been challenging to work with him on understanding and respecting others. He's also experienced some bullying that we had to address with the school. He just finished 8th grade and will be starting high school. I'm concerned about how some of these things will develop over the next years. He is attracted to friends that I think can be a bad influence. He is at that stage where the thoughts of his friends rank higher in his estimation than what we have to say. So when his friends teach him racist jokes, for example, and we try to teach him that they are wrong, he continues to repeat the jokes. He is susceptible to taking in and adopting wrong thinking that he learns from peers.

Just to underline how difficult this has been to tackle, remember that he is both non-white and also has disabilities. So he is absorbing and repeating negative things about his own self and doesn't even grasp that. It's even harder for him to understand how these kind of things may damage his dealings with others.

Because he doesn't adapt what he says to his audience, he repeats these unsavory ideas to us at home, whereas the typical kid would not tell his parents. So at least we know what is in his mind and can talk about it with him. But talking about it with him does not seem to change his ways of thinking.

His ability to fit in with peers may change over the next years. Because his outlook right now kind of suits the way that middle school boys tend to be, so he fits in. But that may change over time.

His relationship with DH and me is uneven. Meaning that there are times when we get along fine, and other times when he is extremely oppositional. Usually both of these within each and every day. DH and I are still learning how to better manage and address these conflicts.

I am concerned about his opinions about girls and what relationships should be like. He does have sisters, so I think that helps. But I think there are a lot of potential minefields ahead. Not just in navigating the things that all teens and young adults do with regard to the opposite sex (which is hard enough!), but I think there are some extra gaps in his understanding. He has an age-appropriate interest in girls but he also has a certain immaturity that could really just land him into trouble.

I also worry that he is going to follow the wrong crowd of friends into experimenting with drugs and alcohol, which is not really about relationships, so much, except that his choice of friends and how he is able to resist peer pressure are concerns. He did witness some things this spring and was able to opt out of participating (according to his own account of events), which was both good and bad. Good that he made a wise choice for himself, but a bad indication about his choice of friends.

 

I think that if he has a spouse in the future, that his lack of ability to see things from another's point of view is going to raise a lot of difficulties. So there are things that I think are important to work on, for long term goals, as well.

That's really just the tip of the iceberg about relationships. There is a lot of room for progress.

 

 

 

[Pen]

7 hours ago, Storygirl said:

Everyone. Sigh.

He gets along well enough with peers right now. Kind of. He has friends at school, but there are some issues, because he has chosen some friends who are making some bad decisions and teaching him some things that we have to re-teach or correct at home. Like racism and making fun of people with disabilities and ideas about girls, and so on. It's been challenging to work with him on understanding and respecting others. He's also experienced some bullying that we had to address with the school. He just finished 8th grade and will be starting high school. I'm concerned about how some of these things will develop over the next years. He is attracted to friends that I think can be a bad influence. He is at that stage where the thoughts of his friends rank higher in his estimation than what we have to say. So when his friends teach him racist jokes, for example, and we try to teach him that they are wrong, he continues to repeat the jokes. He is susceptible to taking in and adopting wrong thinking that he learns from peers.

Just to underline how difficult this has been to tackle, remember that he is both non-white and also has disabilities. So he is absorbing and repeating negative things about his own self and doesn't even grasp that. It's even harder for him to understand how these kind of things may damage his dealings with others.

Because he doesn't adapt what he says to his audience, he repeats these unsavory ideas to us at home, whereas the typical kid would not tell his parents. So at least we know what is in his mind and can talk about it with him. But talking about it with him does not seem to change his ways of thinking.

His ability to fit in with peers may change over the next years. Because his outlook right now kind of suits the way that middle school boys tend to be, so he fits in. But that may change over time.

His relationship with DH and me is uneven. Meaning that there are times when we get along fine, and other times when he is extremely oppositional. Usually both of these within each and every day. DH and I are still learning how to better manage and address these conflicts.

I am concerned about his opinions about girls and what relationships should be like. He does have sisters, so I think that helps. But I think there are a lot of potential minefields ahead. Not just in navigating the things that all teens and young adults do with regard to the opposite sex (which is hard enough!), but I think there are some extra gaps in his understanding. He has an age-appropriate interest in girls but he also has a certain immaturity that could really just land him into trouble.

I also worry that he is going to follow the wrong crowd of friends into experimenting with drugs and alcohol, which is not really about relationships, so much, except that his choice of friends and how he is able to resist peer pressure are concerns. He did witness some things this spring and was able to opt out of participating (according to his own account of events), which was both good and bad. Good that he made a wise choice for himself, but a bad indication about his choice of friends.

 

I think that if he has a spouse in the future, that his lack of ability to see things from another's point of view is going to raise a lot of difficulties. So there are things that I think are important to work on, for long term goals, as well.

That's really just the tip of the iceberg about relationships. There is a lot of room for progress.

 

 

 

 

Are there things other than therapy that might help any of this?

talking to his school principal?

drama class/acting lessons?

being steered to a club or group or class or specific kids who’d be better for him?

an Our Whole Lives type class about sex and relationships? 

A group like Civil Air Patrol? 

 

[Pen]

Was fetal alcohol syndrome ruled out? Your description sounds like a couple of kids I’ve known who had that

[PeterPan]

8 hours ago, Storygirl said:

His relationship with DH and me is uneven. Meaning that there are times when we get along fine, and other times when he is extremely oppositional. Usually both of these within each and every day. DH and I are still learning how to better manage and address these conflicts.

I don't know what peace some ABA and a behaviorist could bring there. My ds goes through these cycles and ABA makes a BIG difference. The meds could help too, sure. But it's both. The ABA puts the dc in a better place without you being the one doing it. Then you get to come in and enjoy.

8 hours ago, Storygirl said:

Everyone. Sigh.

I don't think you should have to defend why you're worried for him. That was why I linked that article, which I hope you read. It's not reasonable to take the experiences of one person with autism who is self-advocating and say well they know what is going on with my dc or going to happen with my dc or could be with my dc and imply you're bad, you're worthless at this, you're ignorant at this because you're (sorta) NT. There are 83 genes, lots of paths, lots of variety. I think SOMETIMES a person on the spectrum can have some insights. And sometimes we're just bringing our own experiences and rigidities and b&w obliviousness. I've done it. Nuts, I feel it. Sometimes, I'm like good night why do these NT people not like their kids??? That's how it actually feels on the other side. But I thought that article was really poignant in pointing out it doesn't help. One person's reality is not another. 

So with my ds, the meaningful (albeit brief, incomplete) relationships he has through ABA give him skills and experiences to do better with the next relationships. It's why it can be a really good intervention.

34 minutes ago, Pen said:

Was fetal alcohol syndrome ruled out? Your description sounds like a couple of kids I’ve known who had that

Yup, I think these ought to be questions and I don't know how you get them answered. If he had exposures, it would make everything harder. His presentation seems crunchy enough that it would be a question. The dc I know who is FAS+ASD is a pain in the butt too. Like sweet, but just a contradictory pain in the butt full on illogical mess. 

8 hours ago, Storygirl said:

I am concerned about his opinions about girls and what relationships should be like.

Is he trying to have relationships with girls? 

8 hours ago, Storygirl said:

Just to underline how difficult this has been to tackle, remember that he is both non-white and also has disabilities.

This is kind of a rabbit trail, but I was thinking last night about your ds and the different types of social relationships. Like I really don't think you need to defend your worry that he will be alone, that he doesn't have the skills. It's a legit concern! But I think you could write out layers of social relationships he could have and think through them and think about which ones he finds meaningful or helpful and about the skills necessary to have them. Our culture is kinda oh I need a bestie, and there are lots of relationships.

For instance I find a lot of comfort these days in the thought of my heritage, my family, the cloud of love I'm surrounded by. I don't know if that makes sense. He might feel disconnected from that. It's not something that takes a lot of social skill, haha, because you're literally just surrounding yourself with pictures or objects and saying I am loved. You can say it's cheesy, but to me it's really important. 

I take a lot of comfort in the thought of God loving me and being a Father to me. He might not be ready for that. I don't know him, but I'm just thinking developmentally he might not be there. It might be something to work toward on a really simple, non-committal level. Like God isn't really on the be perfect, come to me once you get your act together level. He's kind of the opposite of what we expect, and wanting to be most close to those who are hurting, who are orphaned, and showing loyalty irrespective of how good we are. So it's a level of social relationship that doesn't take a lot on his end because all he has to do is receive it. Doesn't take chit chat or compliance or anything else, just realizing he has been overshadowed by love and protection all his life.

There are a lot of social relationships and interactions to be had that are non-committal and don't require a ton of skill or that get quickly replaced when you evidence you don't have much skill. That's your online forums, interest-based forums, clerks in the grocery store, etc. Those can be made better with some basic social skills work and can be unhealthy if you do all one type and not another.

There are sort of middle of the road relationships, like ones you get through your parents, ones you maintain via skype, that kind of thing. I think those are good to nurture. 

There are paid friends, people like ABA workers, SLPs, etc. At one of the local autism schools they call their workers friends and the workers call the dc friends. They'll greet them and say "Hi Friend!" I'm not sure the school system is so hot on building friend relationships with the kids, and yet think about how that is for our kids who are maybe shy on friends. It's ok to have paid friends. It's still love. And think about the difference in opposition when it's "Your friend is expecting you" vs. "This therapist wants to tell you what to do." With my ds I think these friendships with therapists matter. 

Sense of community. This to me is like the church, somewhere you show up and they notice and care. Does he feel connected, like he has a sense of community? We moved a lot when I was growing up, so I thought that was why I didn't have a sense of community. Later I realized it was ME, lol. But it's something I think about with my ds, how could I help him feel like he belongs and is part of an accepting community? If it can't be that way at the church he attends with the family, could he have another church in a few years where he WOULD feel community? The thing is, if he doesn't have community, he'll probably go looking for it.

The Social Thinking people point this out in their workshops, that no one wants to be alone. My ds had very withdrawn behaviors and still can be that way if he's having a hard time. Like last night he had a headache and when the aspirin wore off he went into "leave me alone" mode. It's his defensive posture. But when someone will just sit beside him and be with him, he starts to calm down. Even people who are withdrawing and falling into the aut of autism don't necessarily want to be alone. Like maybe they need to be alone medically for a bit with a migraine, sure. But people in general want connection and meaning and love and we don't have to make excuses for wanting to make sure our kids have that and feel that. But I also don't think social is going to look the same for everyone. Those are meaningful levels of interaction I listed that don't actually require a lot of skills. They're things that maybe aren't top of the list for more typical people. But what if we nurtured other levels while waiting for the more complex skill levels to develop. Friendships have levels (acquiaintance, etc.) and they are complex. Sometimes it's nice to have other levels so you aren't alone. You can have relationships with mentors, with employers. No one wants to be alone. 

[PeterPan]

41 minutes ago, Pen said:

drama class/acting lessons?

Total aside, but we got ds in on a Hunter Heartbeat class this past semester, and it was FABULOUS. Ok, he thought it was a pain in the butt. But I'm just saying it unlocked things for him he didn't know he had. He was good at it, enjoyed it, grew with it, would carry the skills over. He just thought the compatriots were weird and that the pace was slow. But reality was he came out fine, not stressed, and learned things. And he got to do it for free through the drama dept of the university.

[Pen]

9 minutes ago, PeterPan said:

We moved a lot when I was growing up, so I thought that was why I didn't have a sense of community. Later I realized it was ME, lol. But it's something I think about with my ds, how could I help him feel like he belongs and is part of an accepting community? If it can't be that way at the church he attends with the family, could he have another church in a few years where he WOULD feel community? The thing is, if he doesn't have community, he'll probably go looking for it.

 

I’ve been thinking about this a lot lately.

and problem that who may reach out and create sense of community may be not who we parents want to have — people selling drugs or other things, gangs wanting members...

my Ds is also adopted and has a mixed ethic background (and appearance) including Hispanic.  And I think the whole scary social issue and being pulled into bad stuff statistical likelihood is hugely increased with a non white (non Asian) look, quite aside from any LD issues.

@Storygirl  my Ds is a couple of years older than yours, and we really are dealing with these problems right now. I don’t have answers. I wish I did, but being concerned and trying to be being proactive is important.  

That said, I think as parents we cannot control everything and our control gets less as they get older.

 

[PeterPan]

I think we can pick community for our kids or steer them into things or help them try out communities. For instance, there are gamer communities. Honestly, I'm not there and that's not what I'm trying to steer ds into, but they're there. There is the gym community, card club communities, work/service communities. And communities that were for younger kids (scouting, etc.) disappear as they age. The assumption is you go into families, churches, work. So then it's like ok where are single people going for community? With disabilities or maybe older people who can handle some disabilities. Like if my ds is good at Euchre (someone started him on it, maybe), then what community doors open? 

I'm assuming my ds stays single and I'm assuming he needs community. And my single friends tell me the church SUCKS if you're single. And I'm all for being in church, but they're just saying the feel is awful, the sense of community is harder to get, that it's all set up to accommodate families. If you're maybe 50+ you could have something, but what about our kids? 

I don't have answers on it either. I just know I have a ds who can't problem solve that for himself and who isn't going to randomly develop a sense of belonging and community. It's like that article says. Some people with disabilities can self-advocate and make those choices, and some are going to need more help. 

I follow a beautiful lady on FB who runs this farm she started for her ds with ASD. Here, it's Felton Homestead. You can look it up. I don't remember how I found her but she has lovely posts. And she says the same thing. She had to choose because her ds wasn't really able to choose for himself. Now my ds is middle of the road. I get it going and he then has some opinions. But he's not going to be able to connect to communities on his own because he needs significant support.

[Pen]

@PeterPan what’s Hunter Heartbeat?

[PeterPan]

4 minutes ago, Pen said:

@PeterPan what’s Hunter Heartbeat?

Drama for autism basically. It's a little slow/scripted because they don't discriminate by level. It's done in a group, and we did it with a university grad class. Every dc had an assigned student they practiced with and then they did things as a group. It was fabulous. I might have a video uploaded, let me see.

Edited July 14, 2019 by PeterPan

[Pen]

56 minutes ago, PeterPan said:

I think we can pick community for our kids or steer them into things or help them try out communities. For instance, there are gamer communities. Honestly, I'm not there and that's not what I'm trying to steer ds into, but they're there. There is the gym community, card club communities, work/service communities. And communities that were for younger kids (scouting, etc.) disappear as they age. The assumption is you go into families, churches, work. So then it's like ok where are single people going for community? With disabilities or maybe older people who can handle some disabilities. Like if my ds is good at Euchre (someone started him on it, maybe), then what community doors open? 

I'm assuming my ds stays single and I'm assuming he needs community. And my single friends tell me the church SUCKS if you're single. And I'm all for being in church, but they're just saying the feel is awful, the sense of community is harder to get, that it's all set up to accommodate families. If you're maybe 50+ you could have something, but what about our kids? 

I don't have answers on it either. I just know I have a ds who can't problem solve that for himself and who isn't going to randomly develop a sense of belonging and community. It's like that article says. Some people with disabilities can self-advocate and make those choices, and some are going to need more help. 

I follow a beautiful lady on FB who runs this farm she started for her ds with ASD. Here, it's Felton Homestead. You can look it up. I don't remember how I found her but she has lovely posts. And she says the same thing. She had to choose because her ds wasn't really able to choose for himself. Now my ds is middle of the road. I get it going and he then has some opinions. But he's not going to be able to connect to communities on his own because he needs significant support.

 

In retrospect I wish I’d learned about Civil Air Patrol and had tried to steer my Ds that way younger when I still had a lot more influence.   That said, it’s hard to predict future. A film making group I steered him to was wonderful for a couple of years, but then it folded.  The outdoors in Cascades group is still going strong, but he refused to go this summer. 

Im not dealing with ASD and Ds should be able to mainstream more, but these are still all concerning areas

and I agree that Churches tend to be not so good for single people...   except for the still quite young and already widowed 

[Lecka]

This is an aside — but my husband has been active in a card club community (Friday Night Magic, etc, with Magic:  The Gathering cards), and this is a pretty accepting community, but even then there are (rarely) times a person is ostracized or not accepted.  And one example is someone who was very, very rigid about wanting to trade cards in a way that other people considered unfair and he managed to really offend some people over it, and then — he continued the behavior, and continued the behavior.  

My husband would think this person might have autism, and my husband is really a kind and accepting person, but this was too far.  

And then — there are definitely many other people who are very accepted and little things are overlooked or accepted, and if someone loves talking about Magic cards they are in the right place.

I think that is a very accepting community, but still, there are things that have to be present for someone to be able to participate in that community.  

And the same for church, my church is very, very accepting, but you still have to do things to take part.  

I think it can just depend on a lot of things, because I think there are things that are really good options and will probably be successful, but I also think there are still minimum levels even then.  

 

[Lecka]

Ime there may be one church in town with a thriving Singles Ministry.  

I don’t think every church focuses on that, but then if one does they can attract more people and have a more thriving group.  

I know what the ones are in my hometown, in a couple of denominations.  

It’s like — I can also name some churches that have thriving Senior ministries, and Childrens ministries, but not every church is focusing on the same things.  

[Jennifer-72]

It has been quite sometime since I have posted!  You probably don’t remember me, but I have a 14 1/2 year old ds with ASD.  We actually just recently had an appointment with a psychologist regarding ds’s anxiety.  Ds’s anxiety is and has generally been manageable with the tools we have taught him to date.  The psychologist, who specializes in counselling ASD individuals, told us she doesn’t necessarily find this age to be the best for therapy and has had better outcomes in meeting with parents to provide additional strategies to implement.  Perhaps that  would be a better fit right now for your son?  

A great resource to at least open the door regarding talking to your ds about his anxiety is: Playing with Anxiety: Casey’s Guide for Teens and Kids by Reid Wilson and Lynn Lyons.  They also have a book for parents called Anxious Kids Anxious Parents.  

One other thing since there is all this talk of transition planning, we went through this launch program put on by a local agency this past winter and it was very helpful to us.  It was all stuff my dh and I had for the most part had talked about before, but it was nice to see and hear from other families tackling those hurdles as well.  Here is a link to some of the videos they showed.  

https://sinneavefoundation.org/resource-listings-page/video-and-multimedia/

[Storygirl]

4 hours ago, Pen said:

Was fetal alcohol syndrome ruled out? Your description sounds like a couple of kids I’ve known who had that

He does not have the physical facial signs, and no providers have ever suggested it as a concern. But anything is possible, since we don't know his early history.

[PeterPan]

6 minutes ago, Storygirl said:

He does not have the physical facial signs, and no providers have ever suggested it as a concern. But anything is possible, since we don't know his early history.

Fwiw, it looks like there are lesser degrees of FAS where you get the CNS effects but aren't all the way to the facial abnormalities.https://www.aap.org/en-us/advocacy-and-policy/aap-health-initiatives/fetal-alcohol-spectrum-disorders-toolkit/Pages/Diagnostics-at-a-Glance.aspx   So it's not yes/no but how much did he get exposed to. I think it's reasonable question whether he had those exposures, given that his presentation is cantankerous even for ASD. And it's how the dc I know presents where the dc had exposures, about the same age btw. Cantakerous, low IQ but not all the way to ID, and no facial.

Edited July 14, 2019 by PeterPan

[PeterPan]

So the thing is that if it *could* be part of the explanation, you might look for a counselor who is experienced in FAS+ASD. As you're filtering people, it could weigh in. You could see what the techniques are and try them both, techniques for varying levels of FA exposure and techniques for ASD. They may overlap, and all you care is that it works.

Edited July 14, 2019 by PeterPan

[Storygirl]

4 hours ago, Pen said:

 

Are there things other than therapy that might help any of this?

talking to his school principal?

drama class/acting lessons?

being steered to a club or group or class or specific kids who’d be better for him?

an Our Whole Lives type class about sex and relationships? 

A group like Civil Air Patrol? 

 

I'm sure I will end up bringing up the social concerns with the school counselor (or someone) at the high school, once he is established there. I have noted these concerns in his IEP meetings and in written notes I've submitted for the IEP.

I think he would definitely benefit from more direct instruction about male-female relationships and boundaries and so on. He knows I am open to discussing things like that with him, and he has asked me some questions that most teens would never think to bring up with their mom, so I can and do talk with him. But I think he may actually need direct teaching, and it may be good for it to come from someone other than a parent (though backed up by what we say as parents).

His schedule is super full right now with his music and athletic commitments. He is in the school band and last year was also in the school jazz band (it's audition based, so I don't know if he will get in this year). Plus he is in a middle school church band and takes weekly lessons for two instruments. And then he runs track. So he has opportunities to be active in positive extracurriculars. Honestly, though, it's also an issue, because his best friend, who is feeding him the unsavory thoughts, also runs and plays percussion in band. So, yeah. That's unfortunate.

I'm hoping that he may be in fewer classes with that friend this next year, and that he may form a better social group. I think he is likely to stick with these friends, because they accept him. But he does admit that he could be better off picking better friends (this was a surprising comment).

[Storygirl]

At some point back on page one, Lecka asked if the psych who ran the evaluations brought up anxiety as an issue to address.

She upheld a previous anxiety diagnosis as still valid, but it was not the focus of her recommendation for therapy. In our meeting, she focused the discussion more on learning people skills (my term, not hers) --- helping him learn to better communicate with and connect with people. while managing his emotions.

But I think since he is wanting to address his feelings of anxiety, that that is an opening and makes a good place to get started. If he can establish a connection with a therapist, then I think they could move into working on other things, in addition to anxiety.

[Storygirl]

2 hours ago, Jennifer-72 said:

It has been quite sometime since I have posted!  You probably don’t remember me, but I have a 14 1/2 year old ds with ASD.  We actually just recently had an appointment with a psychologist regarding ds’s anxiety.  Ds’s anxiety is and has generally been manageable with the tools we have taught him to date.  The psychologist, who specializes in counselling ASD individuals, told us she doesn’t necessarily find this age to be the best for therapy and has had better outcomes in meeting with parents to provide additional strategies to implement.  Perhaps that  would be a better fit right now for your son?  

A great resource to at least open the door regarding talking to your ds about his anxiety is: Playing with Anxiety: Casey’s Guide for Teens and Kids by Reid Wilson and Lynn Lyons.  They also have a book for parents called Anxious Kids Anxious Parents.  

One other thing since there is all this talk of transition planning, we went through this launch program put on by a local agency this past winter and it was very helpful to us.  It was all stuff my dh and I had for the most part had talked about before, but it was nice to see and hear from other families tackling those hurdles as well.  Here is a link to some of the videos they showed.  

https://sinneavefoundation.org/resource-listings-page/video-and-multimedia/

Thanks, Jennifer!! I appreciate the link and suggestions. I am always trying to think ahead, with the big goal of preparing him for adult life always in mind. The books and videos look great!!

When we worked with psychologists in the past, we always participated in DS's sessions, and much of it was geared toward the parenting side of things. I do think that DH and I could learn more strategies. If we can't get DS to participate well with a counselor, it probably would still benefit us to do it as parents and/or family.

Edited July 14, 2019 by Storygirl

[Storygirl]

23 hours ago, chocolate-chip chooky said:

@Pen mentioned me, so I'm popping in to say hi 🙂 

Our situation is quite different to yours, but I'm very happy to tell you about our experiences using inositol if you're interested.

We're not dealing with ASD or oppositional behaviours. For us, it's OCD, which falls under the anxiety umbrella. Our experience with inositol has been very positive so far.

Thanks!! I do want to do some preliminary reading about choices of anxiety meds, before any appointment with a doctor, because I basically know nothing right now. And I want to be able to ask good questions. Because he has perseverative thinking, I have always worried about OCD becoming an issue. He doesn't have that diagnosis now, but it's something I am keeping an eye on.

Inositol looks interesting, because it is used to treat so many things (I'm looking at webmd.com), and because it occurs naturally in the human body. DS takes other meds already, and I do have a concern with adding to it, so I would count that as a positive. There seem to be a lot of options for anti-anxiety / mood stabilizer medications, and some definitely sound scarier to try than others.

I have no idea what a doctor would recommend for him.

[PeterPan]

There was a book Ottakee had recommended on medications. I got it through the library, skimmed, can't remember the title. It was super thorough, super blunt.

[PeterPan]

I mentioned inositol to my dd today and she said she has tried it, that it's AMAZING, like really astonishingly amazing. Like instant chill.

[PeterPan]

                                            Straight Talk about Psychiatric Medications for Kids, Fourth Edition                                       

This is the book.

[Pen]

54 minutes ago, PeterPan said:

I mentioned inositol to my dd today and she said she has tried it, that it's AMAZING, like really astonishingly amazing. Like instant chill.

 

🙃 I’m not sure I’ve noticed instant chill, for us it seems more to be a gradual build up— 

but just in case I can get some instant chill like your dd I better go take some before our next driving session! 😁

[PeterPan]

2 hours ago, Pen said:

 

🙃 I’m not sure I’ve noticed instant chill, for us it seems more to be a gradual build up— 

but just in case I can get some instant chill like your dd I better go take some before our next driving session! 😁

Dunno, lol. She's super sensitive.

[Storygirl]

4 hours ago, PeterPan said:

                                            Straight Talk about Psychiatric Medications for Kids, Fourth Edition                                       

This is the book.

Thanks! I ordered it from the library.

[Storygirl]

I've been trying to do a little research about therapy options. At this moment, I am feeling both that there are too many things that I need to address and too many directions that we could head in....and also, that we have not been presented with enough good options.

So I am mentally juggling all of the things that have been suggested that he needs and trying to prioritize. Which is hard, because I don't know what is best and am just guessing. And we have some things connected to county services that I need to be working out, regarding scheduling a worker to address some skills. That is a whole thing of it's own that is causing me some stress at the moment. But it's related, because partly I am wondering if I need to shelve that for now and prioritize the official therapy stuff.

And I need to find a psych who can address the anxiety, who would also be able to continue working on the pragmatics when we are ready to shift into that (with the thinking that we can get him through the door with the anxiety thing and then establish a relationship with a counselor who we can continue working with). Someone who is familiar with ABA. But also a psychiatrist to talk about meds. And then there is the suggestion to update the OT and SLP evaluations (putting that on the back burner, but still they are on the list). And I need to contact the school to give them this new report and see if they think his IEP needs changes.

And, oh, by the way, I am also researching psychs for another of my kids, with different needs and issues, so probably not the same psych.

And people don't return phone calls, by the way. Which you think they would, considering we are talking mental health here.

Okay, vent over. (Maybe)

All that above is about there being too much for me to sort through and process, and feel like I am capable and informed enough to make wise decisions.

But also, I'm not sure we have a full picture of our options. The psych who ran the evaluations gave us five names (I think five).
The person at the top of her list is not accepting new patients.
That psych suggested someone else, but the person she suggested is a licensed social worker who works in a counseling practice and is not actually a psychologist.
One of the people on the list does therapy over Skype, which I don't think is the right choice for us for now.
There are two others who look good online, but are pretty far away (30-40 min). While I am not opposed to driving, that is going to be hard thing to work into our schedule once school starts.

So of that list the social worker kind of seems a good choice, but I'm really not sure. Wouldn't we want a psychologist, since we have a complex list of things to work on, including mental health/ anxiety?

Edited July 18, 2019 by Storygirl

[Storygirl]

I'm stressed. You probably couldn't tell. 😏

I'm encouraging DH to do more to help me figure this stuff out. Okay, "encouraging" is a nice word for freaking out and insisting that he needs to help me bear the load.

He's a nice guy. I feel badly that I dumped all over him. However, he is equally a parent, so why am I stuck with most of the stress and decisions?

Edited July 18, 2019 by Storygirl

[Lecka]

I think I think you might want a licensed social worker for counseling and a psychiatrist for medication management.  

I think a licensed social worker who is good and has been recommended ——— is definitely worth a shot.  

It’s really okay to just do one thing at a time.  

I’m sorry it is stressful.

Listen — you have a LOT of things in place.  You have school in place.  You have a current IEP in place.  He participates in some activities and attends church.

You have things to figure out and add to that — but that is an incredible foundation!

Its also possible (????) that you start with the lsw, and she makes recommendations for next helpful steps?  I don’t know if it works that way but maybe she would have informed opinions about some of it?  

You could also wait for a doctor appointment and ask there about the medication management side.  

Anyway — it is okay to just pick something that seems rational and start there, and expect it to take many months to go through this list and see how things go.  That is okay!  

He has a good foundation in place with many of the big things!  

I am sorry it is stressful.  

[Lecka]

I would be pretty optimistic about the lsw though, being in a straight line of recommendation from the evaluator.  That can be how things go and it’s okay.  

People fill up and then sometimes you get someone newer who isn’t full, and then after a year or two they are full and other people can’t get into see them!  

 

Edited July 18, 2019 by Lecka

[Lecka]

My husband has been known to say “you’re the one who knows about this stuff.”  Ummmmm...... not by magic!  

Edit:  but I do think it will be less stressful when you have gotten a little further in, and then your list isn’t as long, and hopefully some things are working out.  

In Very good news — you aren’t getting a new IEP from scratch, you are just adding to an existing IEP.  It’s a million times easier I think.  

Edited July 18, 2019 by Lecka