Outgrowing developmental pediatrics?

[Innisfree]

How long do kids/teens/ young adults see developmental pediatricians? Are there substantial benefits to maintaining a relationship with a dev ped as a teen gets older? Do you think those benefits still apply if the teen in question is strongly resistant to seeing that doctor?

Teen in question is 15. She has always hated and resisted any appointments focusing on her autism or mental health issues. She says the appointments are humiliating, though she's never been treated with anything but respect by the doctors. If she makes it to the appointment she is surly, rude, and uncooperative. 

In school, the same teen is doing pretty well and liked by her teachers. She has some social issues, and I am expecting some academic issues this second semester as her work is getting harder: first semester was designed to be easy. Mainly she wants casual acquaintances, no heavy, deep relationships, and lots of alone time. Given that sort of (lack of) social situation, she is happy in school. She is apparently much easier to deal with than many, many other kids there, to the extent that I worry about her losing her IEP because she cooperates there and isn't failing.

I worry about the future, though. She is not academically inclined, shows a strong disinclination for college, and has few ideas about supporting herself. I could see her working her way into an animal care position. But when she's frustrated she has few resources to work through problems. She's not good at communicating. 

There are programs which can provide job support, and she's on the waiting list now. But if she remains unwilling to acknowledge that she has autism and could use help, I could see us not being able to make use of those programs. 

Does having an existing relationship with a dev ped help make a continuing case that a kid actually has a diagnosable condition as they grow up? Or make it easier to get services? Is there a good reason to drag an angry, uncooperative teen to an appointment, or is this a battle not worth fighting?

[PeterPan]

Are they bringing anything to the table? My dd really liked moving over to a family practice doctor. It doesn't sound like the dev. ped is helping at this point. I mean, you already have a diagnosis and presumably already have common referrals made, flare-up issues dealt with, comorbidities identified. Probably any intelligent doctor could handle her at this point and probably anything they *can't* handle would be referred to a specialist anyway. But am I missing something? I mean, I've never taken anybody to a dev. ped. Just think you already know what he's doing that is unusual or beyond what a family doctor would do. Our regular ped didn't bring much to the table. But for a teen, I'm guessing mental health is more the question, and family docs seem to see a lot of that and can nail it at the most basic level and refer for the rest. We're liking the family doc thing right now.

[Terabith]

We saw a developmental pediatrician early on, but she doesn't see kids over seven.  We transferred to a child/ adolescent psychiatrist, but anxiety was our number one issue.  I could see not being willing to acknowledge issues or that she needs help being an issue, but I'm not sure that a developmental ped, in particular, brings anything to the table.  

[Innisfree]

It may be time to move on from the dev ped, then.

Everything has happened later for us: initial asd diagnosis at 9-turning-10, then a referral to the dev ped. We had a psychiatrist we were seeing before that, but the dev ped took over all medication management, not that dd is taking any meds now.

But-- dd isn't going to agree to talk with anyone about these issues. The dev ped has just been the person who backed us up on everything from ABA, to getting on the waiver waiting list, to getting an IEP. At least once a year, usually 2-3 times, she's laid eyes on dd, seen her behavior, and a few weeks later sent a report basically saying "yup, still looks like asd, plus this and this." The same behaviors don't come up in regular doctors visits, perhaps because the same subjects don't get discussed. That's been a good thing, since dd needs to see a doctor from time to time for physical health, and I don't want to poison that well. Kwim? 

So I'm just wondering if we need to keep anyone who can keep confirming this diagnosis, or are old reports going to be sufficient going forward? 

It is true that all we've gotten lately have been the reports. No new referrals, treatments, etc. And dd is too big for me to physically haul her in to see a doctor she resists.

Edited January 10, 2020 by Innisfree
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[Storygirl]

Unless new concerns, behaviors, or symptoms crop up that might lead to an additional diagnosis, I don't think there is any reason to have repeated confirmation of the autism diagnosis. ASD doesn't go away, so there is no need to confirm it, as far as I know.

It sounds like the developmental pediatrician has been a good source for referral for services. It's often hard to know what next steps to take, so that kind of input can be really helpful. But if you are no longer finding that she is adding things that help your child, seeing her might not be needed.

DS is 15, and we are facing an unknown future for him, with regard to employability, ability to drive, and what his life as an adult might look like, so we are still actively seeking more help from various sources -- the county, the state vocational rehabilitation program (he is enrolled in the teen program that teaches job skills), the school, a counselor. Plus he has time with the SLP at school, and we may pursue some appointments with a private SLP to work on communication, since what the school has time to cover does not cover all of his needs.

So we still have a lot to work on, and we are always asking each person if they can recommend other things to pursue. Our most recent thing was an OT evaluation for driving readiness.

So we are constantly seeking the next thing to do, but we have never seen a developmental pediatrician. Basically, I think if they offer something of value to you, keep going. If they don't, and if you have other connections to services, stop going.

If she is not getting to work with an SLP for her communication issues at school, that is something that can/ should be added to her IEP.

I would also prioritize the job skills programs, even if she is resistant. Because if she can't work, she will live with you indefinitely, right? So it is not just about HER but about your family over all. As you talk with her about her future, you can set some guidelines, including that she either has to be employed, in school, or in a job training program in order to be able to live with you after graduation.

Talking with DS15 about his future is really tricky, because he rejects all of our ideas. But we keep at it, and part of that is the work with the SLP. Because his communication issues will definitely affect his job performance. DS will say now that he has autism. He accepts it. But he really doesn't understand all of what it means or how his other disabilities affect him. He is oppositional with us when we have conversations. We still have a long way to go. I say this, so that you know you aren't the only one dealing with these things.

[Storygirl]

4 hours ago, Innisfree said:

It may be time to move on from the dev ped, then.

Everything has happened later for us: initial asd diagnosis at 9-turning-10, then a referral to the dev ped. We had a psychiatrist we were seeing before that, but the dev ped took over all medication management, not that dd is taking any meds now.

But-- dd isn't going to agree to talk with anyone about these issues. The dev ped has just been the person who backed us up on everything from ABA, to getting on the waiver waiting list, to getting an IEP. At least once a year, usually 2-3 times, she's laid eyes on dd, seen her behavior, and a few weeks later sent a report basically saying "yup, still looks like asd, plus this and this." The same behaviors don't come up in regular doctors visits, perhaps because the same subjects don't get discussed. That's been a good thing, since dd needs to see a doctor from time to time for physical health, and I don't want to poison that well. Kwim? 

So I'm just wondering if we need to keep anyone who can keep confirming this diagnosis, or are old reports going to be sufficient going forward? 

It is true that all we've gotten lately have been the reports. No new referrals, treatments, etc. And dd is too big for me to physically haul her in to see a doctor she resists.

I disagree with this, actually. I don't see how knowing she has autism would be a problem for a physician to know. I can only see how it is helpful.

I wonder if she is picking up from you some hesitancy to claim the diagnosis completely. She will be an adult soon and will need to be able to inform her medical providers about her diagnosis, so choosing a new physician and having her give them her documentation and medical files and speaking openly with them about it.... this would only be GOOD practice for her, I think.

Why would knowing about autism "poison the well" of general health care?

[Innisfree]

Thanks for the thoughtful response, Storygirl. I'll try to address points individually. It may take me a while to get to everything, because I've got to work today.

11 hours ago, Storygirl said:

I don't think there is any reason to have repeated confirmation of the autism diagnosis. ASD doesn't go away, so there is no need to confirm it, as far as I know.

This hasn't been so much a matter of confirming the diagnosis as of showing current difficulties. For instance, in order to get on the waiver waiting list, and then stay on it, we've needed to show that the diagnosis affects her functioning in particular ways right now. So far we've only gone through the yearly update process once, and we haven't needed documentation from a professional, just a phone interview with me. But we did need the documentation for the initial waiver. I'm not sure what else might be coming as we get closer to young adulthood that would require input from a professional who has followed dd.

[PeterPan]

9 minutes ago, Innisfree said:

I'm not sure what else might be coming as we get closer to young adulthood that would require input from a professional who has followed dd.

Well your dev ped sounds like she's been a HUGE help to you the last few years, so I can see why you're frustrated. And if this provider is doing so much to help you help her, that's probably why your dd is pushing back. If this were a BCBA, she'd probably do the same thing, kwim? And there's a sense in which it's awkward, because you need the service but usually that service is connected to the child by RELATIONSHIP. The child has a relationship with the BCBA, sees them weekly, has more ways to interpret it. But this is kind of antisceptic and at an age when kids push back. And the pushing back she's doing she's going to keep doing.

So IF you were to change, it sounds like you need to find someone who fills that same roll, which can be hard. It's not saying it's not out there, just that I agree with you about not wanting to feel ALONE in the process. You may or may not be ready for alone, and the question is who that next support person is.

The other challenge is the way she's pushing back and interpreting things. I don't remember your dd's whole situation, but it sounds pretty challenging, complex. It sounds like you've tried a lot of things and maybe she's not seeing the wisdom of it. And I don't know the whole situation. I just know that *not taking medication* is something that looms as a possible rebellion point for us. Ds' behavior would be pretty serious without either the supplements or medication. So with him, honestly, I've been very direct. I tell him exactly why, genetically/chemically, he has these challenges, why he must take the supplements. I explain that if he chooses not to take them, he will go to a pdoc and take their medication, which will have (long list) of side effects and that if he chooses not to take medication or supplements he will not be able to live with us, that he will have to go away. 

And of course that's a problem too, because then he could be like fine, toss, I don't want to live here, and see that as an out/escape and not realize the consequences. I emphasize how much we enjoy being together, how much he loves his family. I don't belabor the you'll go away, kwim? But in my mind, I'm already there. For us, it's not negotiable because it's not safe. We have really frank discussions: people who hit go to jail...

I'm not saying what you should do, just saying I can see it's hard and hard to think through how to get in her mind and help her without having things backfire. That part I get. I think maybe in some ways I'm more blunt with my ds than some more NT people are with their kids. I want to make sure he connects the dots, understands the consequences of choices, etc. And it was one of the things the behaviorist had us work on pronto, just the really basic "if I walk up to you and say you need to take medication to feel better, you take it." And merciful God above it's one thing that is actually ok in our house right now. I don't know how puberty will change that. I definitely think there's this kind of self-assertion. I watch it in dd and I assume I'll see it in ds as he's 11 1/2. 

Fwiw, I think with him I'll probably go very b&w. You want to self-assert, you want to self-direct, but here are the places to be doing that and here's where it's NOT SAFE to be doing that. I don't know.

11 hours ago, Storygirl said:

Talking with DS15 about his future is really tricky, because he rejects all of our ideas. But we keep at it, and part of that is the work with the SLP.

Hey, I didn't realize you found an SLP to help you!!!!! That's exciting!!! 

11 hours ago, Storygirl said:

Talking with DS15 about his future is really tricky, because he rejects all of our ideas.

My dd is like this. Like not exactly, but in ways you wouldn't expect. She's really in the I don't know camp on work, what she could do, etc. And, this is just me, but I'd *like* to make sure she has good experiences, not unsuccessful, which is going to mean she needs some support. Maybe kinda a Frozen 2 attitude: do the next right thing. Like maybe he doesn't need to "know what he wants to do" but just be willing to take the next right step and have that be good enough. I mean, per the Social Communication Profiles, even at ASD1 you don't expect him to be living independently without support. And he did show up for his summer work program jobs, which is a really good sign. He participated in them successfully. He's willing to go back again to something with enough support? I mean, these are really good signs. 

15 hours ago, Innisfree said:

The same behaviors don't come up in regular doctors visits, perhaps because the same subjects don't get discussed. That's been a good thing, since dd needs to see a doctor from time to time for physical health, and I don't want to poison that well. Kwim?

Like Story, I'm a little confused here. Have you worked her through anything on interoception? Interoception leads naturally to self-advocacy, and self-assertion and self-advocacy are maybe part of what she's developmentally wanting to push for or why she's pushing back. (I don't know, just putting a nice spin on it.) Or if she's pushing back for less nice reasons, refining and redirecting that energy *slightly* to self-awareness and self-advocacy could help. I mean, maybe it's not her age/stage to get through on that, but maybe. That could be you, an OT who has studied it, a psych, an SLP, anyone who is into interoception enough to want to work with her on it.

So on a most basic level, the pervasive, seemingly 100% it's definitely happening, interoception deficits and sensory issues of ASD (which you know, they say you don't have to have ASD to have interoception and sensory differences, but whatever, I'm saying the other direction, weird to say ASD without) are DEFINITELY GOING TO AFFECT MEDICAL. So to have those sensory differences and walk into a doctor's office and try to get care for a problem and NOT talk about them are inconceivable. (said in my most Princess Bride voice) INCONCEIVABLE. 

Her lack of self-awareness probably drives a lot of behaviors.

So no she can't walk into a doctor's office with a cold or pneumonia or yeast infection or whatever happens to her and get help without either disclosing those differences or just flat saying her label. This happens over and over and over and it's a pervasive issue. 

So that's kinda interesting on the whole must say the A word. I think must at least say SOMETHING. The amount you choose to say, how public you are, who you say it with, all that, that's a personal choice. But must say SOMETHING. And that's something to list out, like with this group of people I say this truthful thing that I'm willing to share and with these other people I say this. And you can do the path A, path B, etc. Thing. The Way to A: Empowering Children with Autism Spectrum ...https://www.amazon.com › Way-Empowering-Neurological-Disorders-Ag...  Here's a little book, so helpful to me, to ds, to us. Maybe your library would have it? It's literally just a concept, but it can be really powerful. Like if you go to a doctor's office and don't disclose your sensory differences, anxiety, and variety of diagnoses, he will not realize you are on medications or be able to predict averse reactions, meaning you might get inappropriate care for your (back, pneumonia, etc.) and be more sick and not feel as well if you want. If you disclose your diagnoses, he's better able to treat  your symptoms fully during your situation or not over treat or will be better able to give you support that makes you more comfortable.

https://www.kelly-mahler.com/product/my-interoception-workbook-a-guide-for-adolescents-teens-and-young-adults/  Here's Kelly Mahler's brand new, hot off the presses workbook for teens and adults. Check it out. She JUST sent it to me because I contributed a little teeny tiny bit of feedback on her medical advocacy and self-advocacy cards for how you handle medical appointments. It's actually a HUGE ISSUE people face when self-advocating with sensory differences. Maybe get the book and help her talk through it. It literally just came, so I haven't had the chance to look through it yet. When she's under-responsive or over-responsive, these differences make a big difference in her care. My dd walks into UC or a doctor for conditions I've also had, and she will literally be put on MORPHINE for things that I couldn't even tell were happening. Same exact diagnoses. Seriously. And because her body is so exquisitely sensitive, it affects all her care and the way she's handled. Once they know, they give her extra things and do things differently. And me, because I'm so disconnected and unaware, they do the flip side and have to work harder to find the problems. I literally show up and can't tell them what's wrong and just say vague things, which means I sometimes get the blow-off. Then they do better imaging etc. and are like OH DEAR. Hahaha. I mean, I can laugh about it. 

But like to say must use the A word, I'd be more like must say SOMETHING. We've skirted it with ds so far. I *think* my SIL said he uses the word about himself sometimes. 

Mental health and labels are a hard thing. I remember being told when I was a kid that the mentally ill are the last people to realize they're mentally ill. But isn't that the interoception piece, in a way? I mean, isn't that what we're saying, that by not being self-aware their own self-advocacy and ability to choose what to share and when and why is affected? And IQ is a part of that. So maybe backing up and working on the self-awareness to lead to self-advocacy. Not so much the fight over the label, even though I agree something has to be shared to get good care.

I don't know, hard stuff. Is she able to talk through choices and paths? I don't think you want to lose the problem solving help and I agree you need someone on your team who does that. If your dd can *understand* that, then maybe she can collaborate. But honestly, if she can't understand that, maybe that's the point? I mean, 15 has 18 looming. So you've got bigger issues, the legal stuff. I think you're well-advised to keep your team big and helpful, as big as you need to have the help you need. Alone is not cool on this.

[PeterPan]

49 minutes ago, Innisfree said:

Thanks for the thoughtful response, Storygirl. I'll try to address points individually. It may take me a while to get to everything, because I've got to work today.

This hasn't been so much a matter of confirming the diagnosis as of showing current difficulties. For instance, in order to get on the waiver waiting list, and then stay on it, we've needed to show that the diagnosis affects her functioning in particular ways right now. So far we've only gone through the yearly update process once, and we haven't needed documentation from a professional, just a phone interview with me. But we did need the documentation for the initial waiver. I'm not sure what else might be coming as we get closer to young adulthood that would require input from a professional who has followed dd.

Our county board re-evals every 3 years (or is it 4? something like that), and I think after you get over the bigger humps they stop asking for that. It does sound like your dev. ped is a huge part of your team right now. You'd either have to replace her services (maybe with a BCBA or transition coordinator) or you'd expand your team. Definitely wouldn't want to lose that level o support you're getting, not willingly, not when you have a choice. 

Have you talked with the doc about it? 

The non-compliance is really hard. I think that's what is making this hard, sigh. 

23 hours ago, Innisfree said:

But when she's frustrated she has few resources to work through problems. She's not good at communicating.

Is she hooked up with your county transition services? Sounds like she may need SLP services (pragmatics, problem solving) and needs some things just flat working. What will she be doing this summer? Can they get her into a work program?

Here are some forms to get you started. Little ideas, big consequences, things you can be focusing on or things that might explain why she's having difficulty. 

Employability/Life Skills Assessmenthttps://www.iidc.indiana.edu › Webinars › Employability_skills_checklist

Age-Appropriate Transition Assessment | ELSA ... - OCALIhttps://www.ocali.org › project › tg_aata › page › elsa_documents

 

[Lecka]

I think you need to find some things out from your waiver agency.  
 

I can also understand having smooth doctor appointments where autism isn’t brought up a lot , for your dd to be more cooperative.

I often have doctor or dentist appointments where it is in the chart or I write it on a form, and then it’s never discussed in the course of an appointment.  
 

I think it would be good to know what is looked at by the agency, though, and when you will need to renew.  
 

She is old enough for you to have transition planning as part of the IEP.  I think you should communicate with the school and find out options.  

[Innisfree]

 

On 1/10/2020 at 9:04 PM, Storygirl said:

I don't see how knowing she has autism would be a problem for a physician to know. I can only see how it is helpful.

I didn't mean that the primary care doctor didn't know about the autism. She knows. Just that when dd goes in for a check up, they're measuring height, weight, checking for scoliosis, giving flu shots: physical health stuff. It's important to be able to do those things.

If we talk about autism during the regular doctor's visits, dd will stop cooperating there. She needs to be able to see a doctor. This is what I meant about not poisoning the well: she will refuse to go or cooperate if autism is discussed.

I don't think I have any hesitancy about claiming the autism diagnosis. We talk in positive ways about autism and neurodiversity.

You're right that she'll need to be able to talk with her doctors and advocate for herself, and we have encouraged that. If a different doctor seems like the right choice, that will be fine. But-- she will need to *talk* about it, and for now, she won't.

Regarding communication: the school does not see problems. She's quiet and well behaved there, in stark contrast to many other students. She scored in the gifted range on verbal comprehension on testing, so they won't see a receptive language issue. In expressive language, I think she may still fly under the radar, but she has greater problems. I have tried to find someone local to do the test of narrative language, and couldn't locate anyone who would.

Folks at the school think she's doing great, and compared to many other kids they deal with, she is. She's just completing her first semester in public hs, after years at home. We designed the first semester to be easy. She's getting three A's and hovering between D- and C+ in math. Next semester will be harder. This is all just to say that the school counselor etc do not currently see a problem. So, school is not likely to provide much help. We'll be lucky to keep the IEP.

Interroception: yes, this is a big issue. No, she will not read about it or discuss it.

She wants to control her own life, and forget about autism. She successfully flies under the radar at school, so she can't understand why we won't just forget it at home (not that she has expressed it like that). I think there are still important skills to learn, but we are running up against teenaged obstinacy. I'm not sure we can control this much longer, or even now, tbh. She had an appointment yesterday with the dev ped and refused to go. Yes, there will be consequences, but I can't carry her there, so we need to find some alternative, or else just accept that for the moment she isn't interested in getting help.

Edited January 12, 2020 by Innisfree

[Innisfree]

4 hours ago, PeterPan said:

What will she be doing this summer? Can they get her into a work program?

If she will cooperate, I'm going to try to get her into a work program. She also has a possibility of volunteering connected with an interest, but I think the work program might target needed skills more effectively. No one will ask very much of her if she volunteers.

[Innisfree]

4 hours ago, PeterPan said:

I don't think you want to lose the problem solving help and I agree you need someone on your team who does that. If your dd can *understand* that, then maybe she can collaborate. But honestly, if she can't understand that, maybe that's the point? I mean, 15 has 18 looming.

Intellectually, she can understand all this just fine. Emotions get in the way. I don't think we could make a legal case that she needs a guardian. I think she's going to have to learn some lessons over time.

The thing is, mostly she manages so well these days. Right up until she doesn't. Kwim?  

Most people probably wouldn't guess she has a disability. But not having, say, an employer know that she *does* have one, is going to mean people don't understand why things happen or cause problems for her.

[Lecka]

I think there’s a lot to be said for volunteering with a special interest because if she is interested, she will have more investment.  It seems like it could work.  Over time maybe she could develop to do more.  
 

I think it does sound good.

With the other job training, it sounds like you might be up for a fight you can’t win.  I would still try to find out more about it and things.  

But I don’t think at all, that volunteering will mean no feedback or challenge for her.  If she doesn’t take feedback — there is not some magic someone at job training can do to make her take feedback.  Job training would also be meeting her where she is to a great extent.  
 

Maybe the job training program is so good it would be worth it and much better.  But I think when there is a special interest that is just probably going to go better.  
 

If the job program does seem like she would cooperate and get a lot out of it — then that is different.  
 

But if she doesn’t want to be there then they are going to put low demands on her, or she is going to refuse to go.  Probably.  That is what would be predictable anyway.  Unless she would just — be cooperative with anything outside of home.  And then she would also be cooperative with volunteering?

I don’t know.  I just challenge that, I guess, that job training would definitely be more instructive for her.  It depends on a lot of things but I think it could provide a lot of information to see how it goes.  If it goes poorly that is how you get data saying she needs more services.  If it goes well then it is good for her and connects to a special interest.  

[Lecka]

I think it’s a pretty open question though that you would be able to get her to do a job training program related to her having autism when she doesn’t want anything to do with that at the current moment.  

[Lecka]

Also it might be a self-esteem thing for her and I think it’s tricky.  If she could do okay with the other, it would probably be much better for her self-esteem.  It’s not ideal but I think you have to work with her where she is as much as possible. 

Ktgrok’s son had a great experience with volunteering, too, for what that is worth.  

I have heard with job training that some get a lot out of it and some really don’t get much out of it.  I don’t hear like “oh, it’s the best thing for everyone.”  It’s a service and like any service it will be a good fit for some and for others not a good fit or not the right time etc.  You have to try to be realistic and not think — oh, if there is a program, it will change everything.  At the same time — things can be worth a shot!

If she did try volunteering too, you would be able to see if that might move forward or if it was more “okay so we have to have a Plan B like job training.”   

[Lecka]

There is a lot to be said for building a peer group around a special interest, too.  That is supposed to be protective of mental health.  I think it can go a long way even if your focus right now is paid employment, there are other goals for her age group that are good, like that.  

[Lecka]

Another idea for the future is to hire a job coach to go to the volunteer job with her.  That can be private pay, with funding through the agency that does job training, maybe through the school transition services, etc.  

That would actually make a lot of sense if the special interest is something that could work out for her and she is pretty into it.  

[Lecka]

Like — the person could observe her or talk to the supervisor. Things like that.  That could come later if volunteering was going okay but needed improvement.  
 

Or if you find out she has to have that support from the beginning  — you find that out.  

[Innisfree]

She would not accept having any sort of support at her volunteer position. She would see that as utter humiliation. She's been doing some work there for a year or so, and mostly managing all right. She's had some difficulty accepting criticism, and the folks she's working with aren't thinking about what she might need, just about what needs to be done. At the moment she can walk away for a few days until she simmers down, but in a more formal situation that obviously wouldn't work.

[Lecka]

That is already a good place to be!  
 

So would progress mean — she goes in the bathroom and then is able to finish her shift?  Or, she goes back her next scheduled time?

Is it more she comes home and you deal with it?
 

 

[Lecka]

Honestly too probably she takes feedback better at her special interest place better than she would somewhere else.  If that is what you see anyways. 
 

Do you avoid giving feedback at home?  Maybe giving more feedback at home would help?  I don’t know.  
 

Edit:  I hear either 80% positive/20% negative for feedback, or else 6:1 or 9:1 for positive/negative.  Things like that.  Where most feedback is positive but then some is negative as needed.  

Edited January 11, 2020 by Lecka

[Lecka]

I do think “engaged in the community” is extremely good.  

[Innisfree]

33 minutes ago, Lecka said:

That is already a good place to be!  
 

So would progress mean — she goes in the bathroom and then is able to finish her shift?  Or, she goes back her next scheduled time?

Is it more she comes home and you deal with it?
 

 

Right now there are no scheduled shifts, it's more like "we could sure use help with this whenever you can manage it." She had been going 5-6 days per week, for only about 1/2 hour most days to complete the needed work. Some days she's been there longer and doing more, but there isn't always much for her to do. Over the summer, if we could work something out, she could help with other work.

Progress, right now, would mean she accepts the constructive criticism, asks questions to understand what's needed, and goes back the next day, instead of spending several days thinking about quitting before being willing to go back. That's several different skills right there, so any bits and pieces of it would still be progress.

[Innisfree]

We do give feedback at home. It's received better at some times than others...

It's harder for her to hear at her volunteer place. She has a lot personally invested there and cares about it a lot. When she has asked questions in the past, they haven't always given helpful answers. I think not everyone there is equally committed to having her around, and the person she needs answers from is not the same as the person who initially asked her to help.

She doesn't entirely fit into the group, because they are interested in the activity in a competitive sense, and she has no interest in the competitions. That means she's on the fringes, which doesn't bother her, but clearly puzzles the other kids her age, who have made overtures to her but have been ignored.

[PeterPan]

So accepting criticism is a key factor in employability. https://www.iidc.indiana.edu/styles/iidc/defiles/INSTRC/Webinars/Employability_skills_checklist.pdf  

Fwiw, my ds is much less oppositional when his methyls are under control. Have you ever considered running genetics?

Yeah, it sounds like having the dev ped be the person managing her disability is over. Maybe look for a BCBA who handles transition. Sorry it's hard.

[Terabith]

5 hours ago, Innisfree said:

Intellectually, she can understand all this just fine. Emotions get in the way. I don't think we could make a legal case that she needs a guardian. I think she's going to have to learn some lessons over time.

The thing is, mostly she manages so well these days. Right up until she doesn't. Kwim?  

Most people probably wouldn't guess she has a disability. But not having, say, an employer know that she *does* have one, is going to mean people don't understand why things happen or cause problems for her.

Man....totally relate to this with my 14 year old.  I wish I had advice, but I don't.  I'm trying to get her to the point where she can engage with a doctor, for physical or mental health.  It's awkward because she mostly flies under the radar as not having any issues, right up until she doesn't.  But she also REALLY struggles with talking to strangers, and also articulating how she feels (physically or mentally).  So even with something like a virus, they're asking about symptoms and she's not answering.  And I can't answer, because I don't know how she feels either.  I know she's acting sick.  But it's just really challenging.  Interoception would be awesome to work on, but getting teens to work on something like that is really, really hard, especially if they're unwilling.  Honestly, I think we're at a point where it doesn't make sense to do therapy work of any sort, because she's so resistant.  

It's different, because she's never had behavioral issues anywhere.  She's pleasant and really mostly delightful at home and at school.  But unpredictable demands (talking to a doctor or a science fair judge or someone at church) in unscripted environments just make her freeze.  I think she'll be employable, if she can get a script.  But I'm not SURE it will work.  And school doesn't see any issues, because it's structured and comfortable and she's relaxed.  It's a conundrum, for sure.   I need to talk to the IEP team about a summer job service program.  She has a medical autism diagnosis but not a school one, so may not be able to get transition services through school.  

My older one is going to need work on employability and interacting with the public, but her anxiety isn't under control enough to make that a real issue yet.  But she doesn't have social thinking deficits, just anxiety.

[Lecka]

I think taking feedback can just be really hard.  

[Innisfree]

51 minutes ago, Terabith said:

It's awkward because she mostly flies under the radar as not having any issues, right up until she doesn't.  But she also REALLY struggles with talking to strangers, and also articulating how she feels (physically or mentally).  So even with something like a virus, they're asking about symptoms and she's not answering.  And I can't answer, because I don't know how she feels either.  I know she's acting sick.  But it's just really challenging.  Interoception would be awesome to work on, but getting teens to work on something like that is really, really hard, especially if they're unwilling.  Honestly, I think we're at a point where it doesn't make sense to do therapy work of any sort, because she's so resistant.  

Yes. All this, exactly.

Editing to add that we get shrugs. "I don't know," shrug. Also, "I don't care." 

She's always seemed like a resistant social communicator, to use MGW's typology.

Okay, guys, thanks for the insights. I guess we're probably done with the dev ped, though I'm going to talk with both her and dd before I give up completely. We may or may not substitute someone else at this point. I'm going to spend some time thinking about everything folks have suggested here.

Edited January 12, 2020 by Innisfree