Being ghosted by our neuropsych: Update we have made contact!

[SanDiegoMom]

How long do you wait when you are being ghosted? Is there any recourse other than leaving emails and phone calls?  We had an intake Dec 30, the evaluation was Jan 6, the doctor said I should be getting the parent evaluation form within the week (for autism/adhd) and it sounded like the results pretty quickly thereafter.  After 10 days I sent an email. After two weeks I left a voicemail. And now it's been three weeks.  Is this normal? It's so frustrating, even just not to hear anything. If she said hey I'm overwhelmed, or not able to get into the office, yada yada yada, that's all fine. But all we have is crickets.

 

When my daughter was evaluated for Adhd, we had it done in July.  She said it would take a few weeks max.  It took like 3-4 MONTHS to hear back.  There had been some kind of family emergency apparently, but that's all we heard.  It was so frustrating.  I thought this would be better since we have better insurance and the psych seemed to have her act more together, but alas.  Here we are again! 

[EKS]

We had something like this happen.  It ended up that her husband had left her and she had some sort of breakdown.

Edited January 27, 2021 by EKS

[PeterPan]

Yeah it sounds like something major has happened. Can the results wait a month? Have you paid?

[SanDiegoMom]

32 minutes ago, PeterPan said:

Yeah it sounds like something major has happened. Can the results wait a month? Have you paid?

It's covered by my insurance and none of it has been billed yet -- the Dec 30th or the Jan 6.  I guess we will just wait.  There's no emergency, but it's just something we have working towards since summer so it's kind of a bummer to wait more.  Oh well. 

[PeterPan]

I think given the covid situation things just happen. I’ve waited 6-8 weeks for reports anyway. 

[Storygirl]

I think it's okay to call once a week and leave a (nice) message, asking someone to return your call and give an update about the timeline. Does she have office staff, or are your messages going directly to her own phone line? If you are leaving them on her direct line, but there is a general office number, you might see if you can get someone else to respond to you.

I do think it's common for it to take longer for people to produce reports than they say. I've had it happen before, and it is annoying. I did recently have someone not return my calls and eventually found out that she had received poor medical news and was not taking new clients after all; unfortunately, that can happen. I think it's more likely for someone to get behind and not be good at managing client communication.

I hope you hear from her soon!

[kbutton]

I would also consider that she could have or have recently had Covid. Many therapists have at least some clients they see in person (and testing is generally in person). They spend at least 45 minutes to an hour with clients in small spaces that require privacy, so they are quite at risk.

[Cake and Pi]

I'd give it 6-8ish weeks minimum before getting any bit concerned about not having a report. Hopefully you got some kind of verbal explanation of the results already so you won't go crazy from curiosity before then?? 

My DS#4 had his repeat autism eval on December 18, six weeks ago. We had a quick phone follow up two weeks later, so I know he is being diagnosed with ASD, but we still don't have the report. The psych happens to see another of my kids for behavioral therapy, so I know she's well and all. She's probably just busy and working her way through a pile of reports and other obligations.

Turn around is generally way quicker when you're working with someone who only takes private payments and doesn't accept insurance. 

[PeterPan]

7 hours ago, Cake and Pi said:

Turn around is generally way quicker when you're working with someone who only takes private payments and doesn't accept insurance. 

6-8 weeks for a report here and never a hint. Only on occasion has a psych promised upfront to expedite. Otherwise always slow even with private pay. I think they have routines (eval certain days, write others).

[SanDiegoMom]

Ok, we will just lay low and hope for the best.  I would have had no problem waiting 6-8 weeks if she hadn't mentioned 1-2 weeks!   

I am thinking that if it comes back stating that he is indeed on the spectrum we will then pursue a 504 with the school.  I am sure I will be asking advice again for that! 

[PeterPan]

On 1/31/2021 at 9:42 AM, SanDiegoMom said:

if it comes back stating that he is indeed on the spectrum we will then pursue a 504 with the school. 

Why 504 and not IEP? That's something that gets decided by the school anyway, but I wouldn't assume an IEP would not benefit him. By definition of the diagnosis it would. The issue is typically that the school and practitioners aren't running the evals that would show the deficits needing the intervention. Even ASD1, by definition, would benefit from intervention. Do you know whether she did pragmatics, narrative language, the Test of Problem Solving, anything for metalinguistics, or other testing? 

What you really might want to do is make your written request to the school stating you suspect a disability affecting his ability to access his education. Hopefully the timing of the report can sync with that initial meeting (which they have 30 days to make happen) so you can get this going. You'd like to complete the IEP process by the end of the school year to have it in place for fall. You can look at the IEP timeline for your state and think through timing on that. And if he did not have the tests I listed, you might want to go ahead and get them done privately to make your case stronger and gather more information. The schools will often not run the evals to show the disabilities that need the intervention. Handy way to save money. 

[SanDiegoMom]

3 hours ago, PeterPan said:

Why 504 and not IEP? That's something that gets decided by the school anyway, but I wouldn't assume an IEP would not benefit him. By definition of the diagnosis it would. The issue is typically that the school and practitioners aren't running the evals that would show the deficits needing the intervention. Even ASD1, by definition, would benefit from intervention. Do you know whether she did pragmatics, narrative language, the Test of Problem Solving, anything for metalinguistics, or other testing? 

What you really might want to do is make your written request to the school stating you suspect a disability affecting his ability to access his education. Hopefully the timing of the report can sync with that initial meeting (which they have 30 days to make happen) so you can get this going. You'd like to complete the IEP process by the end of the school year to have it in place for fall. You can look at the IEP timeline for your state and think through timing on that. And if he did not have the tests I listed, you might want to go ahead and get them done privately to make your case stronger and gather more information. The schools will often not run the evals to show the disabilities that need the intervention. Handy way to save money. 

Thanks, I was hoping you would chime in on the difference -- I wasn't sure and in my head I was thinking of them interchangeably.  Yes, I think I will contact the school and see what their evaluation process is and if I can get the ball rolling there.  

I don't know what the neuropsych did.  I know that SHE knows we what our concerns were -- we did an hour long intake with her and I had come prepared with all the concerns we had noticed over the years and were finally putting together as possibly all related.  But he is very highly gifted so I don't know what types of deficits would show up.   He just said he answered like 150 questions.  I couldn't get much out of him beyond how much he enjoyed the IQ testing portion.  I haven't gotten the parent questionnaire since she has dropped off the radar now. 

The main issues we have seen is definitely the social aspects -- monopolizing conversation, not being able to converse on things that others are interested in, etc.  He's definitely always had sensory issues, though only with sound and maybe lights.  However occasionally he has struggled with types of school assignments -- for instance when homeschooling last year we had to drop a class that was based on coming up with opinions on subjects (kind of like an opposing viewpoints class) and justifying them with the provided readings.  It sounded right up his alley, but he had severe anxiety and almost shut down due to the stress -- he said he had no opinions and literally could not come up with one.  It was extreme.  Then just recently in public school he had an assignment where they had to talk about their first impression of a classmate and show evidence for how they came by the impression, and then talk about how their impression changed and show evidence for that.  It was a bad assignment considering the zoom environment, but even with all of our discussion about the purpose, how to write it even if you HAVEN'T changed your opinion or know very little about the person to begin with, etc, he just could NOT bring himself to write it.  It took me typing and basically leading him through it step by step and allowing him to state that he didn't change his opinion after all.  He literally could not lie about it, and he almost had a panic attack about this assignment.  This is a ninth grader in Calculus who is also taking an organic chem/bio chem class on the side.  And he struggled with a single paragraph.  

So hopefully if there is any type of support, modified assignments and all work given in writing would be the most I could think of.  This teacher also did not post assignments and rubrics and he often felt at sea, not knowing the expectations.  That has definitely been the hardest part about public school so far.  Every teacher is different, some are very organized, some are extremely disorganized, and the pacing is unpredictable.  

 

Anyway, off to contact the school! Thanks!

[PeterPan]

7 hours ago, SanDiegoMom said:

Yes, I think I will contact the school and see what their evaluation process is and if I can get the ball rolling there. 

You want to write them a letter, signed/dated/copied for your records, that states you suspect a disability affecting his ability to access his education and are requesting evals to determine if he requires a 504/IEP. This is a legal request you can make due to federal law, and the school doesn't always give you complete (or correct) information. If you just "chat" about it, you haven't made the legal request. If they say they'll talk with the teacher, no one has made the legal request. And the legal request gives you TIMELINE protections. 

So you want to read about the IEP process. Your state department of ed should have info on the timeline and how it works. They may have specific things they call each step, but each step will have timeline protections. The main key is to make that request and not let them blow you off. The teacher can also make that request, but as the parent you can.

7 hours ago, SanDiegoMom said:

So hopefully if there is any type of support, modified assignments and all work given in writing would be the most I could think of. 

I think if you get some evals by an SLP where they look at his metalinguistics, social thinking, problem solving, pragmatics, etc. there would be more than accommodations. He would actually benefit from some intervention. As you say, if he's accessing his education and slipping through, they can say they don't care. What you might want to do is pursue those evals and interventions *privately*. Were you looking for that? Where do you see this going?

That kind of rigidity and anxiety will affect employability. He clearly has the smarts, but what you're wanting is the social thinking and understanding level that will make him employable and functional. 

[SanDiegoMom]

15 hours ago, PeterPan said:

You want to write them a letter, signed/dated/copied for your records, that states you suspect a disability affecting his ability to access his education and are requesting evals to determine if he requires a 504/IEP. This is a legal request you can make due to federal law, and the school doesn't always give you complete (or correct) information. If you just "chat" about it, you haven't made the legal request. If they say they'll talk with the teacher, no one has made the legal request. And the legal request gives you TIMELINE protections. 

So you want to read about the IEP process. Your state department of ed should have info on the timeline and how it works. They may have specific things they call each step, but each step will have timeline protections. The main key is to make that request and not let them blow you off. The teacher can also make that request, but as the parent you can.

I think if you get some evals by an SLP where they look at his metalinguistics, social thinking, problem solving, pragmatics, etc. there would be more than accommodations. He would actually benefit from some intervention. As you say, if he's accessing his education and slipping through, they can say they don't care. What you might want to do is pursue those evals and interventions *privately*. Were you looking for that? Where do you see this going?

That kind of rigidity and anxiety will affect employability. He clearly has the smarts, but what you're wanting is the social thinking and understanding level that will make him employable and functional. 

Thank you for the details -- I don't think any of the social thinking, pragmatics, etc was tested, but I really don't know since I don't know where she is! So I will put the request in through the school and make sure they tell me exactly what they are testing for.  

The last sentence is exactly what I am worried about.  Like he does just well enough until the anxiety is so high he shuts down or refuses to do something.  And it's been small things so far, but I am afraid of them getting bigger.  Like, this past assignment he refused to and it was a difference in his semester grade between an A and B.  Based on the level of anxiety he was showing I decided to let it pass -- I don't want to create brinksmanship issues unless it really is necessary.  But what if it is something bigger later on?  I don't know how to work him through the next situation. 

Plus my husband just doesn't quite understand.  He thought he was refusing the assignment because he just didn't like it, and thought he should just suck it up and do it.  But this level of anxiety was a lot higher from my point of view than just not liking or being comfortable with the assignment.  Like my husband can be totally on board with ds being on the spectrum, or with our oldest being Adhd, but when it gets to the nitty gritty issues he still thinks it is just the difference between them wanting to do something or not wanting to do it.  Like telling someone with adhd to just focus.  Or telling someone with executive functioning problems to just figure it out, there are planners out there.  Grr. 

[PeterPan]

4 hours ago, SanDiegoMom said:

the difference between them wanting to do something or not wanting to do it. 

Well the disability and the not wanting to intertwine. It's hard, so it's easier not to. It's hard, and without the tools they can't.

Have you thought about meds for the anxiety and getting therapy? Ideally he'd start with *interoception* work using an OT (or psych or you or anyone) and then learn about Zones of Regulation or other cognitive behavioral strategies. He needs the interoception work first, because without that you're talking at someone instead of helping them feel their body. Odds are if he's having anxiety in that moment he's having it other times. So you start with the interoception so he can build the understanding and realize it and then take steps. 

Fwiw, for me, a short acting anxiety med let me turn on/off the anxiety. That's when I could finally FEEL it. I didn't realize how much I was walking around with all the time, kwim? So I wouldn't assume just because he's not saying it that it's not there.

Also, I think your dh will just be behind where you are because you're doing the research. And he might not be so self aware himself. 

[SanDiegoMom]

She wrote back! I should have had faith:). It's only been a month.  And one phone call and two emails.  She's sent the parent questionnaires and says she will have the results on the 11th and we have an appointment scheduled for that afternoon!

I will wait for that and then contact the school psychologist.  Their counselor is awesome and gave me a lot of info and told me what the process would entail.  Actually maybe I will contact the school psych and get the ball rolling anyway.  It's obvious he's got pretty severe anxiety, so we can talk about accommodations for that I guess if we need to as well. 

 

[PeterPan]

1 hour ago, SanDiegoMom said:

Actually maybe I will contact the school psych and get the ball rolling anyway. 

The legal timeline starts from the day you make the written request. They have 30 days to have that initial meeting and another 30 to eval and another... And they're going into their busy season. Is she saying she'll give you the written report on that day? Or she'll meet with you, talk/clarify, and THEN write/mail a report? You just want to have that report when you meet with the school initially, because that's your evidence to get the ball rolling. 

[SanDiegoMom]

12 hours ago, PeterPan said:

The legal timeline starts from the day you make the written request. They have 30 days to have that initial meeting and another 30 to eval and another... And they're going into their busy season. Is she saying she'll give you the written report on that day? Or she'll meet with you, talk/clarify, and THEN write/mail a report? You just want to have that report when you meet with the school initially, because that's your evidence to get the ball rolling. 

Thankfully the report will be finalized before then and given to us next week.  

I do wish I had gone into the process having read more about all the different tests ahead of time.  I filled out three different parent questionnaires and felt only two of them to be useful and one supremely not useful.  But one was specifically focused on 14-18 age and social skills and seemed most relevant.  I remember how much I struggled with my daughter's adhd evaluation because the questionnaire was geared towards kids and she was 18! It was really hard to answer and I didn't get a ton of guidance -- for instance most of the behaviors regarding angry outbursts and meltdowns or impulsive behaviors she HAD done at that age, but didn't anymore at the age of 18!  And then she of course researches and finds out that there are updated questionnaires for her age, and even specifically females.  Sigh. 

I am preparing him ahead for any result -- he seems to think he has adhd and to us it is pretty clearly does not.  He is just going on the emotional overwhelm and trouble focusing and anxiety, all of which he does share with his sister.  

[PeterPan]

2 hours ago, SanDiegoMom said:

he seems to think he has adhd

He's a little old for them I guess, but there's a charming series (all dogs have adhd, all cats have aspergers, all birds have anxiety, etc.).

2 hours ago, SanDiegoMom said:

He is just going on the emotional overwhelm and trouble focusing and anxiety,

Not to say something that hadn't occurred to you, but it could be more the opposite, that they're both on the spectrum. The line is fine, basically nonexistent at points. Have you read about interoception?

https://www.kelly-mahler.com/what-is-interoception/  You might discuss this with him. It's LIFE ALTERING. 

Also https://www.socialthinking.com/Articles?name=social-thinking-social-communication-profile

Personally I find the DSM a fraught tool. So if he thinks what is happening sucks or is illogical, IT IS. Run genetics and see. http://www.autismweb2.com/genetics/

Btw, if he does get his diagnosis, you might like to participate in the SPARK study. Free and it gives you feedback (sometimes, eventually, haha) if you have at least 3 family members submit. 

Edited February 6, 2021 by PeterPan

[SanDiegoMom]

On 2/6/2021 at 9:42 AM, PeterPan said:

He's a little old for them I guess, but there's a charming series (all dogs have adhd, all cats have aspergers, all birds have anxiety, etc.).

Not to say something that hadn't occurred to you, but it could be more the opposite, that they're both on the spectrum. The line is fine, basically nonexistent at points. Have you read about interoception?

https://www.kelly-mahler.com/what-is-interoception/  You might discuss this with him. It's LIFE ALTERING. 

Also https://www.socialthinking.com/Articles?name=social-thinking-social-communication-profile

Personally I find the DSM a fraught tool. So if he thinks what is happening sucks or is illogical, IT IS. Run genetics and see. http://www.autismweb2.com/genetics/

Btw, if he does get his diagnosis, you might like to participate in the SPARK study. Free and it gives you feedback (sometimes, eventually, haha) if you have at least 3 family members submit. 

I actually bought the workbook for teens on interoception, so I need to run through it with ds.  DD definitely knows she has issues -- doesn't feel much cold, pain, hunger, etc.  Did not understand what emotions she was feeling before therapy.  Both have executive functioning issues. Both have sensory issues, though both are pretty mild.  (Mainly just noise and maybe lights). Both are very focused on fairness, though she is much better at being flexible than he is, being six years older.  But she is SO chaotic compared to him.  She uses routines as a tool to be productive, but doesn't seem to NEED them to allay anxiety like my son does.  She needs them because she falls into the black hole of time blindness without them.  She drives him crazy with her unpredictability.  It would be funny if it didn't cause him so much stress.  She's gotten better now and doesn't do it quite as much on purpose like she used to:) 

I have been thinking about the genetics.  I will have to check that out. 

[PeterPan]

3 hours ago, SanDiegoMom said:

It would be funny if it didn't cause him so much stress. 

Has someone been talking of referring you to a pdoc? (psychiatrist) It can take a month to get in around here. Might be something to think about, like just to start looking. It sounds like his anxiety is pretty significant, and it would be treatable. Nuts, after using meds for mine (finally!), I found a gene that explained it (a very uncommon problem with B6) and am treating it naturally. But either way, natural or meds, it sounds like it's enough that he could use more than strategies. Just a thought.

[SanDiegoMom]

5 hours ago, PeterPan said:

Has someone been talking of referring you to a pdoc? (psychiatrist) It can take a month to get in around here. Might be something to think about, like just to start looking. It sounds like his anxiety is pretty significant, and it would be treatable. Nuts, after using meds for mine (finally!), I found a gene that explained it (a very uncommon problem with B6) and am treating it naturally. But either way, natural or meds, it sounds like it's enough that he could use more than strategies. Just a thought.

We definitely would like to get him on meds -- his last psychologist said probably by high school, especially if he went back to public school, he would probably need them and we agree at this point.  The biggest thing that always slows me down from getting him treatment is the fact that every appointment causes him stress in that it takes out time during the week and he gets behind on school! So I tend to under schedule.  But that will be next I think.   

[PeterPan]

25 minutes ago, SanDiegoMom said:

appointment causes him stress

Fwiw, getting my ds' serotonin levels up and the anxiety down directly correlates to decreased stress with his sessions. You might look into telehealth to get the scrips. And if you're interested in alternative/supplements/biomedical, there are ways to approach it that way too. 

[SanDiegoMom]

So I did finally hear back from the Neuropsych, and we had our "debrief" appt last Thursday.  We STILL do not have the report in hand, which is killing me, but she's back on the radar now so I have faith again that it is forthcoming.  I just am not a fan of over promising if there is any chance you can't come through.  If she had said it will be finalized and sent to you probably by next week, that would have been fine! Instead she said that night or maybe the next day (at the latest!) and here it is the weekend. 

So basically she said that he is ASD.  That there were deficits in social communication skills, the special interests, and the emotional regulation.  She said he has pretty severe anxiety and to please give both of these things their weight and to look into medication.  She was especially excited to let him know (and I'm sure he was ok hearing it) that he was the smartest kid she's ever tested and that he solved some puzzles no one had ever solved for her before.  And that all the scores are within range of each other... except for processing.  Which is almost 50 points lower (yikes). So still in the average range since the rest of the scores are so high, but definitely is something that will need support and accommodations. 

She is putting in names of social skills groups in the area and psychologists who work with ASD teens. Hopefully.  We will see when we see.  

 

[PeterPan]

Sounds like good stuff! Did she assign a support level? I assume it's 1?

The low processing speed isn't a surprise. On the anxiety, if you want you could look in genetics, biomedical, etc. first. Not that you shouldn't treat it (because you should), but that there are a few underlying causes that are surprisingly easily treatable. 

Remind us, you're working on the interoception angle? Psychs are a lot of talk, and until you get the interoception in place, the rest is just head knowledge. 

Well good, sounds like you got a lot sorted out!

And yeah, I'd give her 3-4 weeks for the report and just stop fretting it. It's like labor. The more you put the due date off in your mind, the less frustrated you are.

[SanDiegoMom]

15 hours ago, PeterPan said:

Sounds like good stuff! Did she assign a support level? I assume it's 1?

The low processing speed isn't a surprise. On the anxiety, if you want you could look in genetics, biomedical, etc. first. Not that you shouldn't treat it (because you should), but that there are a few underlying causes that are surprisingly easily treatable. 

Remind us, you're working on the interoception angle? Psychs are a lot of talk, and until you get the interoception in place, the rest is just head knowledge. 

Well good, sounds like you got a lot sorted out!

And yeah, I'd give her 3-4 weeks for the report and just stop fretting it. It's like labor. The more you put the due date off in your mind, the less frustrated you are.

We plan to work on the interoception asap.  We did get the report today (yay) and the Dr put in the report a suggestion for genetic testing, and to bring the report to the pediatrician.  

I do feel like the evaluation leaned pretty heavily on my reporting.  On the one hand, I am a self professed expert on my kids.  On the other, the whole reason to seek diagnosis was to get an outsider view.  She did note deficits in pragmatics (social conversation, am I correct?)  Basically that the give and take of conversation eluded him when talking to her and he could only go 1-2 steps deep in a back and forth conversation. Low eye contact, etc.  She said the ADOS was done but it was unable to be scored because of masking and social distancing?  Ugh.  But the biggest takeaway is he has a diagnosis and we are going to start seeking some social skills supports and tackle the anxiety.  So still a win.  

[Lecka]

They can’t “score” tests if there is any thorn that makes it different from how it was done when it was “normed” (when they gave the test a certain way to a reference group).  
 

They can still have all their observations and their professional opinion.

I wouldn’t worry about it if he has an official diagnosis, unless it might come up at some point to qualify for services.

Our insurance in the past required an ADOS score — but I am sure they are making allowances now during coronavirus.

We have not needed an ADOS for anything besides insurance.  Other things (like government services) for us have required a diagnosis (but not specifically the ADOS) and a questionnaire about daily living.  
 

That may not even apply in the slightest!!!!!!

Just to say — I wouldn’t worry about the ADOS not being able to be scored.  It sounds like it still provided useful information.  That is the main thing.  

[PeterPan]

59 minutes ago, SanDiegoMom said:

She said the ADOS was done but it was unable to be scored because of masking and social distancing?

That tells you she saw enough doing the ADOS that she feels quite confident saying it's ASD. When you're worried that it was all based on what you said, no she saw it in the ADOS. She just can't give the scores because it's not normed for masks, etc. The score can be interesting a higher score substantiates an ASD2 diagnosis for a dc where they're going back and forth. But since the question is not which support level (no big money on the line), you really don't need the exact score. It's enough that she saw it and it is and she can diagnose it. 

1 hour ago, SanDiegoMom said:

he could only go 1-2 steps deep in a back and forth conversation. Low eye contact, etc. 

You know, I meet people frequently who are like oh no one who meets my kid knows, he doesn't need services, he passes for normal/NT, etc. Not only did she see the ASD, but she saw enough that she REALLY REALLY wants you to get therapies and services for him, kwim? It's not like oh he's fine, now you know, embrace his quirkiness. No, she's like seriously, get him hooked up and moving on some services, even in a pandemic.

I didn't know ths person had run the ADOS but that should hold a lot of weight for you that someone did a tool that good and it showed. And it tells you you're not just getting an opinion from any old random psych either. It's a person who spent enough time and was engaged enough with the subject that s/he wanted to get trained on the ADOS and get skillful. So again, lots of weight there. It's a high standard for diagnosis.

Well good, glad you got your report and have some things rolling! This dc is 15? Interesting. Puberty is really fun here. I'm looking forward to being on the other side.

 

[Lawyer&Mom]

I wouldn’t worry about the ADOS.  I was ready to diagnose him based just on your anecdotes in this thread.  I’m so glad you got this figured out before college, so you can make sure he has the supports he needs from the start.

My smart off the charts Autistic guy friends ended up working in professional fields, but in supporting roles well below their intellectual ability.  And that’s totally okay!  They have less responsibility and therefore less anxiety and are successful grownups, just not in the way people probably expected of them when they were super genius kids. 

[SanDiegoMom]

2 hours ago, PeterPan said:

 

Well good, glad you got your report and have some things rolling! This dc is 15? Interesting. Puberty is really fun here. I'm looking forward to being on the other side.

 

Yes, puberty has been a real game changer.  Combine that with a cross country move during a pandemic to a place where we can't start up anything in person? It's been a perfect storm. 

1 hour ago, Lawyer&Mom said:

I wouldn’t worry about the ADOS.  I was ready to diagnose him based just on your anecdotes in this thread.  I’m so glad you got this figured out before college, so you can make sure he has the supports he needs from the start.

My smart off the charts Autistic guy friends ended up working in professional fields, but in supporting roles well below their intellectual ability.  And that’s totally okay!  They have less responsibility and therefore less anxiety and are successful grownups, just not in the way people probably expected of them when they were super genius kids. 

Yeah, when he was younger and really so obviously off the charts advanced I was all in on trying to feed the whole gifted side.  Now I want him to feel good about himself, successful in what he sets out to do, and able to have maintain quality friendships.  And I feel like this is a much bigger ask! 

[Lawyer&Mom]

3 hours ago, SanDiegoMom said:

Yes, puberty has been a real game changer.  Combine that with a cross country move during a pandemic to a place where we can't start up anything in person? It's been a perfect storm. 

Yeah, when he was younger and really so obviously off the charts advanced I was all in on trying to feed the whole gifted side.  Now I want him to feel good about himself, successful in what he sets out to do, and able to have maintain quality friendships.  And I feel like this is a much bigger ask! 

It’s tricky. You still want to feed his intellectual abilities, without being hung up on the outcomes.  Looking back on my own Autistic life, I thrive in smaller, less competitive environments, where I can easily feel like a part of a group.   (I have more social desire than social skills...)  So maybe sending me to UC Berkeley at 17 was a mistake?  But on the other hand I totally needed the academic peers at a school like that.  Such a balancing act, and one that I’m always worrying about with my own gifted Autistic kid.

I’m an government attorney, it’s a collegial environment, with very little competition between the attorneys but limited opportunities for career advancement.  My mom still asks me when I’m going to find a private sector job and make big bucks.  Never?  I’m Autistic.  My plate is already *really* full.  I know she expected me to take over the world, and I have friends from grad school who are doing just that, but for better or worse this is what my world domination looks like.

[PeterPan]

5 hours ago, SanDiegoMom said:

Now I want him to feel good about himself, successful in what he sets out to do, and able to have maintain quality friendships.

You might see what his goals/wishes are. He might not value the same things you do or he might wish some other things were within reach. 

[SanDiegoMom]

12 minutes ago, PeterPan said:

You might see what his goals/wishes are. He might not value the same things you do or he might wish some other things were within reach. 

You're absolutely right, thank you! I was so focused on the fact that I have always chosen these things for him, I forgot to question the inherent fact that I do.  I am so used to him not really thinking more than a day in the future, or just not knowing how to set goals. for things that he might want.  His goal is usually the next nintendo game right now. 

 

[SanDiegoMom]

1 hour ago, Lawyer&Mom said:

It’s tricky. You still want to feed his intellectual abilities, without being hung up on the outcomes.  Looking back on my own Autistic life, I thrive in smaller, less competitive environments, where I can easily feel like a part of a group.   (I have more social desire than social skills...)  So maybe sending me to UC Berkeley at 17 was a mistake?  But on the other hand I totally needed the academic peers at a school like that.  Such a balancing act, and one that I’m always worrying about with my own gifted Autistic kid.

I’m an government attorney, it’s a collegial environment, with very little competition between the attorneys but limited opportunities for career advancement.  My mom still asks me when I’m going to find a private sector job and make big bucks.  Never?  I’m Autistic.  My plate is already *really* full.  I know she expected me to take over the world, and I have friends from grad school who are doing just that, but for better or worse this is what my world domination looks like.

Yeah, even if he got in we probably would discuss reasons NOT to go to Berkeley.  But, you know, when my daughter was in ninth grade we weren't even sure she would make it through high school, and now she's graduating from UCLA.  So things can change.

[PeterPan]

11 minutes ago, SanDiegoMom said:

His goal is usually the next nintendo game right now. 

Haha, well of course. That's the EF issues and the lack of self awareness. But he probably has some things that BUG him that he wishes could be different and doesn't know how to make different. 

[PeterPan]

Or put another way, I assume your list came from a set of problems you perceive. So I'm saying it would be interesting to know what *he* thinks his problems are.

When we did this with my ds, the things that I thought were problems were problems, sure, but it turned out my list didn't include the things *he* thought were problems. It was kind of a redefining of our relationship. When you have someone with severe EF issues, sometime they aren't very good at planning out the steps to solve their problem, so then they just don't. Or they know they have a problem sorta but aren't self aware enough to realize what they'd like to do about it. Or their anxiety is too high and holding them back. 

It's just an interesting moment when they state their problem and then are asked what THEY are going to do about it. 

So you can drag him to therapy and conversation sessions, or he can decide he wants them because they would help him achieve his goals. Same thing but how you get there.

You're being told a lot of things you COULD do, and they're all fine. Some of orders of what feeds into what, but sometimes it's more that there are a bunch of ways to shake the same stick. You could work on conversation, sure, but you don't HAVE to. You could work on interoception and the person might become self aware enough to finally realize he's boring you stiff and want to do something about it. It doesn't necessarily matter which thing you start with so much as that he was really engaged and decided he had a reason to be there, that it's getting him something he wants. 

It's not that he knows what he needs or is going to make this happen for himself, lol, but you have a lot of options and can go for things that have buy in, things that seem useful to him, things that maybe meet a need he feels he has. (as in solving whatever bugs him most) 

My ds met a really famous BCBA from another country, and the man asked ds what most bugged him about his life. I dno't remember exactly how he worded it, but that was the point. And ds is like I'M BORED. Now me, I was so busy with all the appts I was taking him to and all the stuff I was making sure happened, I didn't really think of him that way, kwim? But ds felt like his biggest problem in the world was BOREDOM. And the guy then is like WHAT ARE YOU GOING TO DO ABOUT IT? And this was two years ago, so ds was 10. And he just stood there, like OH I didn't know I had any power about that. 

So I'm not saying be ethereal and say a kid with EF issues is going to do magical things, haha. But it's something to think about or a conversation to have as you're prioritizing all the things you could be doing here. Like maybe "having friends" isn't on his top list right now but something about his living situation or a skill or thing he wants is, kwim? My ds is most motivated by therapies that get him something he wants. Doesn't mean he's organized and going to do the homework for it, haha, but at least there's buy in.

[SanDiegoMom]

Thanks @PeterPan! That is giving me a lot to think about. We've had a lot of talking with/at him the last few days, but on the other hand we are only a few months ahead of him on the diagnosis (I started to put the pieces together in the fall, and he knew nothing about it and only just now learning). so we've been focusing more on that.  His extreme low self esteem led us to this diagnosis, so we're trying to work on that first -- and getting his buy in will definitely direct that best.  He is getting back into piano lessons, is going to Tae Kwon Do, and we are brainstorming other projects that he might like to work on -- anything to get him off the computer for a little while. 

 

 

[PeterPan]

6 minutes ago, SanDiegoMom said:

His extreme low self esteem

Has he read anything directed to him as a person on the spectrum? Has he knowingly MET anyone on the spectrum? Just as a suggestion, you might start there. I think it's really important to have a whole view of yourself (whole vs fragmented, broken) and I'm not sure the NT community is the place to get it. He may need to meet some people on the spectrum and hang with them. Now some funkiness could rub off, but some self acceptance could too.

There's also a group (business, two BCBAs I think) on FB called Autism Level Up that might be interesting to you. They're also in that vein of reframing things and not letting the NT drive how everything is presented. If you want to have his self esteem go up, you're partly wanting him WHOLE, and the way to get there is not to go into you're so broken and these therapies fix it mode, kwim? Let him hang with some people who view themselves as whole, who have figured out how to balance differences and strategies and what needs a strategy and what needs acceptance, kwim?

That can also be chemistry. You said they were going to run genetics. Depression, anxiety is not just cognitive. In our house a lot of that is chemistry, and as @kbutton says "better living through chemistry" haha. You're not going to cognitive it out. Multiple options on how to get there, but chemistry will be a big part. 

I think I'm saying I don't know if I would have wanted a diagnosis to follow with "and now here are the appointments to fix you" kwim? Not that you are or mean it that way, but I'm just saying he's a whole person with worth AS IS and he was before and is still. And sometimes that needs a little slowing down in the middle of the swirl to find that acceptance. I'm all for therapies as a way to get tools. I'm all for self education as a way to get tools. But none of that is going to change who he IS. It's just something you can think about, what does the WHOLE version of him look like, the one that is happy and on track and feeling empowered and somewhat confident, kwim? 

I don't know, those years are so angst filled. Good luck, lol. 

[PeterPan]

14 minutes ago, SanDiegoMom said:

anything to get him off the computer for a little while. 

Did they also diagnose ADHD? The screen time bumps dopamine, making him feel more organized. So you could tackle that from a chemistry perspective (up dopamine with meds) or from an EF perspective (develop routines so he doesn't have to organize to make them happen. One strength of spectrum is that habits can be very unchanging, haha, meaning if you chain and GET a habit, it can become something they do on autopilot. So then the trick is to think about how to chain and get those things that just happen that way on auto, by habit, because they're built in.

Fwiw, not only is choice and organizing and making the task happen but also too much (too much space, too many choices, too anything) is overwhelming. You might see what becomes easier with streamlining. Two choices, not open choices. Clothes lined up in order. A more streamlined set up. For instance, I'm WAY more functional in a hotel or RV than I am in my house. Seriously. The whole thing just overwhelms me and is too much. 

Would he do better with some herd effect?

[SanDiegoMom]

1 hour ago, PeterPan said:

Did they also diagnose ADHD? The screen time bumps dopamine, making him feel more organized. So you could tackle that from a chemistry perspective (up dopamine with meds) or from an EF perspective (develop routines so he doesn't have to organize to make them happen. One strength of spectrum is that habits can be very unchanging, haha, meaning if you chain and GET a habit, it can become something they do on autopilot. So then the trick is to think about how to chain and get those things that just happen that way on auto, by habit, because they're built in.

Fwiw, not only is choice and organizing and making the task happen but also too much (too much space, too many choices, too anything) is overwhelming. You might see what becomes easier with streamlining. Two choices, not open choices. Clothes lined up in order. A more streamlined set up. For instance, I'm WAY more functional in a hotel or RV than I am in my house. Seriously. The whole thing just overwhelms me and is too much. 

Would he do better with some herd effect?

They did not diagnosis adhd -  he doesn't see to have the same problems at all as his adhd sister - no time blindness, not really messy or unorganized, remembers small tasks (never been late turning anything in, can get ready to go somewhere in a short amount of time). He struggles with executive functioning if there are too many choices, and if he's made too many choices during the day he's pretty much done for the day.  So the first half of this school year was very unstructured and he really suffered trying to figure out every day what subject to do next, when to do them, nothing was the same.  I don't have great EF myself so I didn't help in the right way.  Now his daily classes are more predictable, the same time slots every day, and he's much happier. 

The difference I see between him and his sister at this snapshot in time -- she sticks to a tight routine because otherwise she won't be productive and she gets lost in time.  He likes the tight routine because it makes him less anxious, because there are fewer choices to make. She doesn't seem to mind making choices at all and she loves spontaneity.  He gets regularly thrown off by that. (One night she convinced us by power of her extreme persuasion to watch a movie at six instead of 8 like usual.  It threw him off the rest of the night -- he refused to watch the movie and then had a lot of trouble getting to sleep that night. 

We are virtual schooling now but are signed up for hybrid when they go back.  We think the structured day would benefit him.  Hopefully we will have accommodations in place for when it goes back full time.   He hasn't been in school since 2nd grade. 

Re herd effect: There are some families that I know that run a really tight ship and have very set routines.  (my sister's household is like this -- so very structured). I know he would LOVE that.  My husband hates monotony and can be very spontaneous, my oldest daughter for years always had some crisis to throw things off... so now we are trying to make a more concerted effort to install routine. It's a slow process. 

[Lawyer&Mom]

It is so frustrating to me how many books for parents of ND kids assume the parents are perfectly NT, or at least a wholly NT mom.  Devise and keep track of an elaborate reward chart (!!!) to help the kid develop a daily routine.  I need someone to do that for me!  What I lack in order and structure, which the whole family would love, I hope I make up for in empathy and understanding...

[SanDiegoMom]

50 minutes ago, Lawyer&Mom said:

It is so frustrating to me how many books for parents of ND kids assume the parents are perfectly NT, or at least a wholly NT mom.  Devise and keep track of an elaborate reward chart (!!!) to help the kid develop a daily routine.  I need someone to do that for me!  What I lack in order and structure, which the whole family would love, I hope I make up for in empathy and understanding...

YES! I am ready at the drop of a hat for spontaneous mental health counseling, I can come up with all the great ideas, but implement those? Ugh.  

[PeterPan]

56 minutes ago, SanDiegoMom said:

She doesn't seem to mind making choices at all and she loves spontaneity

Choices are a funny thing. You both have to bring the anxiety down (meds, biomedical, CBT, whatever) *and* you have to know what you want (interoception). When I first started working on the self awareness piece with the trauma counselor and doing body scans, etc., I realized I didn't know HOW to make a choice! Sometimes now I know what I want (interoception) and sometimes it's that I sorta know but distrust myself (from years of negative thinking habits). So a lot of times now I use strategies. Whatever I see first on the menu I go with. Or I decide my meat and ask the waiter to tell me their fav. Or I narrow it to two and ask the waiter their opinion. Next shirt in the closet unless I have an opinion (@kbutton's trick). 

Ironically, both my dc are exceptionally decisive. Like crazy decisive. Go figure. But it was somewhere in that journey that it started getting better with making decisions. And yes, decision fatigue is very real!! 

1 hour ago, SanDiegoMom said:

He gets regularly thrown off by that.

Hopefully that gets better as you get the anxiety down. But yes, it's disregulating to have things not go as you expected. It doesn't necessarily go away, but it may tone down a bit and become something he can work through with strategies. 

I think too that when you aren't very self aware, the anxiety response, that agitation and stress with the change, it's all happening TO you without you being in control. So as you work on the interoception piece, that puts him BACK IN CONTROL of how he feels. Because then he's going to recognize that it's happening and be able to decide for himself what he wants to do about it. 

That's why I talk about the interoception so much, because it's very empowering. It moves you from victim of your neurology to in control. You then have a CHOICE to do something about it. But when it just happens to you, you're the victim. I saw a post on a FB group and they were going on about how co-regulating is where it's at, blah blah, and I'm like THAT IS SUCH A LOAD OF CR*AP. Obviously you don't leave people alone, but these therapists seem to have such extremes like well you just need to do the strategies I taught you (I, I, I) or I'll be there for you and help you work through it (I, I, I). And it's all hogwash.

The person becomes self aware enough to begin to choose their own strategies. It takes YEARS to get there. You start and three years from now he'll be better than he was. And  you support him in doing it until he gets there by learning about it, by talking about your own body and your own emotions and how you handle things. 

I wish I could say it goes away, haha, the whole thrown for a loop by a change. It doesn't. BUT what changes is how much of a victim you are to it, how unaware you are, whether you can be in control and make a choice about it.

45 minutes ago, Lawyer&Mom said:

What I lack in order and structure,

I know! LOL 

45 minutes ago, Lawyer&Mom said:

Devise and keep track of an elaborate reward chart

Not age appropriate for a 15 yo. But adults do this all the time now with apps. There's one Carrot I think where you upload your list of goals and it berates and goads you into doing things. 

Structure was something I had to discover for myself, what it means, how to get there. It's hard too because not only am I my own entropy, but I have the disadvantages of age, fatigue, busyness, and other excuses. But we do grow in it or can grow. 

Just 5 minutes of mindfulness can give you a 30% EF bump. In other words, sometimes it's not that you need a new brain but that you need to access the potential of the one you have. It means if you take enough 5 minute chocolate + body scan breaks, you can stay quite productive all day long. 

1 hour ago, SanDiegoMom said:

He hasn't been in school since 2nd grade. 

Oh my. So you're going to use this documentation and go through the IEP/504 process? My ds has an IEP. It's kind of a long fight, but you're right to be lining stuff up. Good luck.

 

[PeterPan]

1 minute ago, SanDiegoMom said:

YES! I am ready at the drop of a hat for spontaneous mental health counseling, I can come up with all the great ideas, but implement those? Ugh.  

I wouldn't be too hard on yourself. Sometimes it's that it's February, you haven't had a break, you need to walk a beach, you're burnt out. I get a break and then I'm like oh, I've got this. It's not like what you've been doing is EASY.

[kbutton]

22 hours ago, PeterPan said:

So a lot of times now I use strategies. Whatever I see first on the menu I go with. Or I decide my meat and ask the waiter to tell me their fav. Or I narrow it to two and ask the waiter their opinion. Next shirt in the closet unless I have an opinion (@kbutton's trick). 

OP, I think if you can find things he really cares about or doesn't care about, you can start whittling down those choices into strategies. A strategy is perfect, even for NT people, for things they want to automate. The clothing trick PeterPan is talking about is something a co-worker of mine did, and she is NT. She just likes to automate things. Her wardrobe was mix and match--all shirts went with khakis or jeans. Certain days of the week were khaki + shirt, jeans + shirt, or a dress/skirt. Since things were mix and match, she put all the newly clean items to one side and worked her way through stuff sequentially. Freed up brain space for something that mattered.

23 hours ago, SanDiegoMom said:

He likes the tight routine because it makes him less anxious, because there are fewer choices to make. She doesn't seem to mind making choices at all and she loves spontaneity.  He gets regularly thrown off by that. (One night she convinced us by power of her extreme persuasion to watch a movie at six instead of 8 like usual.  It threw him off the rest of the night -- he refused to watch the movie and then had a lot of trouble getting to sleep that night. 

So, sometimes this sort of forces a choice vs. being a problem with varying from a routine--not changing gears well can have a variety of needs behind it. But with this sort of choice, he potentially has to figure out if fear of missing out is stronger than whatever he wanted to do at the time. So, it's not just, "I like routines" sometimes. Also, that chaining that PeterPan mentioned? He might already chain stuff--it might be that one thing leads to another and another in his mind, and it works. And it just happened vs. being planned, so it might not be optimal chaining (or it might be optimal, so doing something different would be annoying, lol!). So, exposing those possibilities to him might help him decide that while he likes routines, if he'd like to change his routine, then he can decide, and he can learn ways to do this over time. He might feel bossed by his routine even at the same time it comforts him. He might currently be defaulting to something because it's the path of least resistance, and he fears changing up something and the fallout of it maybe going wrong.

Just saying that there are lots of thoughts that could go into this that he might not realize he has.

My son has learned to be flexible, but it helps if he has some notice. It also helps if he can mentally decide, "If I watch this movie early, I can do xyz to make this situation work out." But making those decisions means knowing why the consistency is important and knowing what part of breaking consistency is a problem (and it might vary depending on what is changing). 

 

[Terabith]

7 hours ago, kbutton said:

OP, I think if you can find things he really cares about or doesn't care about, you can start whittling down those choices into strategies. A strategy is perfect, even for NT people, for things they want to automate. The clothing trick PeterPan is talking about is something a co-worker of mine did, and she is NT. She just likes to automate things. Her wardrobe was mix and match--all shirts went with khakis or jeans. Certain days of the week were khaki + shirt, jeans + shirt, or a dress/skirt. Since things were mix and match, she put all the newly clean items to one side and worked her way through stuff sequentially. Freed up brain space for something that mattered

 

I am all about the automating clothing and food and hygiene routines.  I really feel like at least half of parenting is teaching kids to automate routines.  

[SanDiegoMom]

18 hours ago, Terabith said:

I am all about the automating clothing and food and hygiene routines.  I really feel like at least half of parenting is teaching kids to automate routines.  

And we have none right now.   It's more of a -- hey you haven't showered in a couple days -- you have a few minutes now. Why don't you go take one? Or hey, you haven't brushed your teeth yet and we are FINALLY leaving the house.  Go do that really quick! It's fine for one but much harder for the other kid. I think I will start with that. 

[Storygirl]

For our one son, who had been hit or miss on hygiene issues, I made a checklist and put it on a clipboard with a pen attached, so that he can cross off things as he does them. I made a Word document with three columns. The first column has Monday through Sunday lists for morning. The other two columns have the evening lists Monday through Sunday (there are more things on the evening list, so it takes more room). I print off a few at a time and attach them to the clipboard, and each Monday he throws away the previous list and starts a new one.

This way we can say, "have you done your list?" instead of having to give verbal reminders about each thing.

Note, making a list did not magically solve the issues. We had to supervise use of the list for quite a while, until it became more automatic. It took him longer to consistently do the morning list without reminders than to do the evening list. We had some tendencies to cross things off without really doing them, as well. The checklist is not a solution for the issues as much as it is a way to help automate the chores and hygiene things and make it so that he could act independently of a parent's reminders and instructions. Sometimes we still have to give instructions and reminders when hair is not getting clean, despite time in the shower, etc. It really just is taking longer for the one kid than for the others (we have four teens). Sometimes I look at one of the others and ask how long it's been since they washed their hair, so some of this is a just a teen issue, but it's definitely taken a more parenting for the one with ASD and ADHD.

We include things like putting clothes into the hamper and wiping the bathroom sink, in addition to hygiene items, such as using deodorant and putting in his retainer.

Edited February 18, 2021 by Storygirl