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ADHD Diagnosis for 9th Grader - Update on May 13 Post


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I am continuing the thread I started on the Chat Board here. I have numerous anecdotes to share in hopes that you can help me figure out what level of testing to seek. I won't be able to post everything at one time, so it's likely that I'll be adding as today and tomorrow go on.

Pregnancy: He was an extremely active baby. For the last three months of my pregnancy he would start kicking every day between 2-3pm and kick me for the next 2-3 hours straight.

Babyhood: He was an extremely alert newborn and hit his milestones early. He was reaching for objects at seven weeks old. At three months old he would jump for 30-45 minutes straight in a jumper. Even when he was exhausted and in need of a nap he wouldn't stop. He'd just keep jumping while wailing away. He was crawling at six months old, although it was another month before he could sit up. He was also cruising along the furniture at seven months, although he didn't let go to walk for more than two steps until thirteen months old. 

He cried a lot as a baby, both from gas issues and because he was a poor napper. Except for maybe the day he was born, he didn't nap for more than 45 minutes at a time until seven months old. It took forever to settle him to sleep, then he'd wake up exhausted and we'd go through it all over again. (Nighttime was within normal baby standards.) He failed so much in his sleep that we needed two swaddling blankets pinned on him tightly for him to have any chance of him sleeping. DH's relatives called our setup "The Straightjacket." By about four months old it was impossible to keep him swaddled.

Toddler: He was an early talker and sociable.

Middle Childhood: He would regularly disappear from the table in the middle of lunch to go play. Then he'd declare he wasn't done eating. It took years to get through to him that running off to play was sending the message that he was done eating. By age 7 he was becoming more impulsive, poorly behaved, and violent towards us. Age 9 was the worst. At 11 I put him on lithium orotate (an OTC supplement) and within a week or two his mood became more even and the violence lessoned. At 14 he still takes it, along with fish oil, zinc, and a few other supplements.

Age 10: He finally figured out that the empty feeling in his stomach meant he was hungry. Despite this, being hangry still continued to be a regular problem.

Ages 11-13: Constant arguing about school work continued. 

Age 13: He could finally take a list and a pile of school work into his room and mostly stay on track. He finally started to act more mature on a somewhat regular basis than his brother who is three years younger.

Age 14: School is much better, although he tends to rush and make dumb mistakes. He is almost caught up in writing, which was a subject I had to delay and lighten for years because of his attitude issues around it. He finally recognizes he's hungry (maybe because he's in vacuum-up-all-the-food mode) and we no longer have to make him eat because he's hangry. Unfortunately, he still doesn't notice when he's tired.

The current big problems are:

  • Still impulsively and/or carelessly hits his younger brother. He sometimes notices and apologizes, but often denies anything happened.
  • Still generally pesters his brother, such as grabbing things like a toddler without asking.
  • Lying is still a big problem. Not noticing stuff he just said or did is another problem. We know he deliberately lies, but at least sometimes he seems to mix up reality and his imagination.
  • Sneaking screen time is still an issue. (We have passcodes on everything, but sometimes something happens and a device isn't locked up. Then he'll get up in the middle of night to play video games or watch YouTube of video games for hours.)
  • He still has a problem where he "remembers" us saying things we never said. He'll make up rules we don't have and then argue about them. Or he'll say something and then one minute later deny he ever said it. It's like living with someone who's gaslighting us. I'd wonder about an auditory processing disorder except he only really does it do his dad and me.

As far as school, he's about an A- student. If he were more conscientious he could be an A+ honors student (except for spelling) because he's very smart, although he often says he's dumb and can't remember stuff. It seems, however, that he uses it more as an excuse.

 

 

Edited by JumpyTheFrog
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Well what do you want to change? Your problem is the mood issues on top of attention may be more than what your GP wants to do. So that needs a pdoc (psychiatrist). You can do a pdoc or psychiatric nurse practitioner, but either way. The stimulant meds could make the mood much more unstable, so pdoc.

If you want to change how you work with him and get the full list of diagnoses, psychologist. Yes you'll be glad you did. Basically you can spend as long evaling as you have $$ for. You're just going to learn more with more hours. Given that he's quite bright, you might try the Hoagies Gifted list of psychs and see if you like anyone there. Mainly, just find someone who will do as much testing as you can afford (longer is better) and make sure they're actually helpful to talk with. I had one who was a donkey on the phone and he never improved. They should come across as helpful on the phone. That's your pro tip, lol.

https://www.kelly-mahler.com/what-is-interoception/

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

Read these two articles and see what you think. 

Edited by PeterPan
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I would think you would need to go with a neuropsych eval that does the full scale IQ test and then the questionnaires for your son and yourself to fill out - not sure what they are called even though I've done them twice now!  After that if you are open to med, getting a psychiatrist for the med and a psychologist for the behavior -- so much of the "bad" that you see is anxiety because they cannot control themselves.  Lying is a protective mechanism.   It will start to go away when he is better able to control his actions.  My daughter lied for years and it was painful for her -- she felt so out of control of herself and hated feeling that way and she lied to avoid the shame of constantly being perceived as bad and wrong.  

Screen time not only provides the dopamine hit, which their brains are sorely lacking, but also helps control the anxiety.  For my daughter the self soothing was netflix and chocolate.  And the chocolate wasn't just a bar of chocolate -- it was jars of nutella hidden under the bed.  ice cream bowls, candy wrappers... she really struggled and then lied about it because of shame.  She is 21 and doesn't lie anymore,  but she has struggled still with the food ( she just went paleo to control the sugar cravings) and the screens (she has regimented her life as much as possible but if she picks up her phone at a bad time she can literally lose 2 hours to it). 

So to summarize: 1.  A good diagnosis will be the first step in understanding what is going on and to reset his thinking regarding himself -- there is such relief in realizing "I am not bad. I have a hidden disability and certain things are harder for me than for others". 

2.  Then meds if willing (they were a huge relief for my daughter, though they needed experimentation to find the right drugs and the right dosage

3.  Then CBT if possible with a psychologist, or at least lots of reading on ADHD (Hallowell, Barkley, Jessica McCabe's How to Adhd videos have all been so helpful to us. 

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1 hour ago, SanDiegoMom said:

Lying is a protective mechanism.   It will start to go away when he is better able to control his actions.  My daughter lied for years and it was painful for her -- she felt so out of control of herself and hated feeling that way and she lied to avoid the shame of constantly being perceived as bad and wrong.  

The one thing that has given me hope through all the years of lying is that it has all been related to him trying to keep from getting in trouble. My other son has teammates that lie about stupid stuff, such as it being their non-existent brother's birthday. I've been hoping that perhaps ADHD meds would help DS improve his self-control enough that he wouldn't have as many things he wants to lie about.

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I started him on Vitamin Shoppe's Relora Calm a few weeks ago and he became much calmer within a few days. Here are the ingredients:

Quote

 

Magnesium: 100 mg

Relora: 250 mg

L-Theanin: 100 mg

Passion Flower: 100 mg

5-HTP: 75 mg

Lemon Balm: 50 mg

 

I think there is definitely an anxiety component. Can it manifest itself as arguing about imaginary rules?

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I've been looking into neuropsych testing. I found several places that seem to offer it. One is in my town, but their website doesn't give many details. Another one seems to be part of a small chain (?) and also doesn't give many details.

The third possibility is at a local university and is $1700-2100 (or higher if autism is suspected). Specific tests weren't listed but the description mentioned: learning disorders, ADHD, ASD, giftedness, memory, emotional and behavioral difficulties, and reading, writing, and math processing issues. It sounds like the process involves an initial appointment, testing another day, and a follow-up appointment with a written report four weeks after testing.

A fourth place: Psychoeducational $1875 (5-6 hours testing), Neuropsych + Psychoeducational $2295 (6-8 hours testing), ADHD only testing $995. This place lists many of the tests used.

Any thoughts?

 

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2 hours ago, JumpyTheFrog said:

The third possibility is at a local university

So that's still a lot of money. I will tell you the worst feedback we've had over the years has been university (supervised student) neuropsych evals. Do not recommend. 

2 hours ago, JumpyTheFrog said:

A fourth place:

This is sounding good. You should call all of them and talk, definitely. I suggested you look at https://www.hoagiesgifted.org/psychologists.htm  and it would still be a good idea. 

I think your challenge is not what you already know but what you don't know. Yes, spectrum could be on the table. Any time there's significant ADHD and people are missing clues about how other people feel, it's on the table. So you want the place with the most tools, the longest eval options. See, but they might start low and work up, depending on what they see. They may not be doing evals in person right now. I think just call places and get a sense for them. You only need one, haha, but you may need to call 7 or 8 to feel confident you've got the one you want. 

Edited by PeterPan
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3 hours ago, JumpyTheFrog said:

Improved impulse control would be one of the top two. Then he wouldn't pester his brother and trigger fights.

Well meds are gonna help with that. If the meds don't also tamp down the behaviors, then you're looking into a bit more involved intervention, something like Zones of Regulation, something for self awareness (interoception, Kelly Mahler) so he realizes how he's feeling and how the other person is feeling.

Btw, you mentioned early on that he's social or was when young. Someone can be *extrovert* and on the spectrum. Someone can be *socially motivated* and on the spectrum. So I'm not saying he is, but it could be on the table, sure. Typically a neuropsych is going to run the GARS (hate) or the ADI-R (good). Occasionally you'll find someone trained on the ADOS (gold standard). Neuropsychs try to bill themselves as one stop shops, but my experience is mixed. 

How is his narrative language? https://mindwingconcepts.com/pages/methodology  Some neuropsychs will run some language screeners, but sometimes clinical psychs will surprise you and also have these tools. So it's not the label on the door but what they're really doing. 

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16 hours ago, PeterPan said:

How is his narrative language? https://mindwingconcepts.com/pages/methodology  Some neuropsychs will run some language screeners, but sometimes clinical psychs will surprise you and also have these tools. So it's not the label on the door but what they're really doing. 

I'm not totally sure I understand your question, but he's never had language problems. He was an early talker, and when he was four he liked to have me write down stories he told.

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I think ASD is on the table too. 

9 hours ago, JumpyTheFrog said:

I'm not totally sure I understand your question, but he's never had language problems. He was an early talker, and when he was four he liked to have me write down stories he told.

Language issues can be subtle. language this something most kids on the spectrum have an issue with, and narrative language is often a problem area. There are many facets to language, and high IQ kids with good vocabularies can have language holes that are hard to pinpoint. I see some red flags in your post for social language issues—sometimes called pragmatics. I see more flags for using language to problem solve, which overlaps pragmatics. I would want language testing the the Test of Problem Solving for adolescents at minimum, and I would want commentary on how it went beyond just the scores—you can still get good data from a test even if it comes back in normal ranges if there are some oddities. The lying to get out of trouble is one of the flags for me, along with the arguing about rules that don’t really exist—those are both miscommunication about problems, which can be related to language, perspective taking, and rigidity.  

Edited by kbutton
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14 hours ago, kbutton said:

The lying to get out of trouble is one of the flags for me, along with the arguing about rules that don’t really exist—those are both miscommunication about problems, which can be related to language, perspective taking, and rigidity.  

Is it possible that both these problems are just the result of ADHD and anxiety? He only has these kind of problems with us. He doesn't give other people this kind of trouble. He showed definite signs of ADHD at gymnastics practice and anxiety (acting as a total jerk to us while getting ready in the hotel) before meets, but not the other issues.

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I will say that parenting books, especially Christian ones, make me feel totally discouraged. I gave up reading them years ago. DS doesn't seem to learn from his mistakes or punishments like my other child. About the only book that was ever actually useful was The Manipulative Child.

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5 minutes ago, JumpyTheFrog said:

Is it possible that both these problems are just the result of ADHD and anxiety? He only has these kind of problems with us. He doesn't give other people this kind of trouble. He showed definite signs of ADHD at gymnastics practice and anxiety (acting as a total jerk to us while getting ready in the hotel) before meets, but not the other issues.

Yes, but it also can be that he feels more constrained with others AND has a language issue. Regardless of the problem, kids often display their weaknesses with parents and not with others. It’s very common. It’s something to rule out vs. a for sure language issue.

3 minutes ago, JumpyTheFrog said:

I will say that parenting books, especially Christian ones, make me feel totally discouraged. I gave up reading them years ago. DS doesn't seem to learn from his mistakes or punishments like my other child. About the only book that was ever actually useful was The Manipulative Child.

Um, yeah. I had a pretty big crisis of faith at one point over churchy and “acceptable” sources of parenting information. Though secular stuff wasn’t any better until I found info on gifted kids and 2e kids. My kids and their milestones (and problems) were so out of sync with norms that I was labeled as the problem multiple times. Testing has borne out that my observations and hunches were real. 

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How do your kids handle holidays? From ages 7-9 DS ruined my birthday every year. He seemed to get these unreasonable, unspoken expectations around holidays that resulted in massive meltdowns or fits. After three years in a row, we decided to stop telling him it was my birthday. I think at 13 he was finally able to handle it without ruining the day.

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3 hours ago, JumpyTheFrog said:

DS doesn't seem to learn from his mistakes or punishments like my other child.

Yes, that would require inferences and cause effect. Several people here have politely suggested you put ASD on your list of consideration, and yes ASD would cause issues with inference and cause/effect. 

3 hours ago, JumpyTheFrog said:

He doesn't give other people this kind of trouble.

Well you're going to see masking, which is where the kid is holding it together, not letting it show. Then when he's SAFE and with people he's comfortable with, OUT IT WILL COME. 

2 hours ago, JumpyTheFrog said:

From ages 7-9 DS ruined my birthday every year. He seemed to get these unreasonable, unspoken expectations around holidays that resulted in massive meltdowns or fits.

Oh that's interesting. So just read about spectrum a bit, see what you think, kwim? It might be that some behaviors are so normal in your family that you miss them. https://www.socialthinking.com/Articles?name=social-thinking-social-communication-profile  See if anything here resonates.

The line between ASD and ADHD are kind of blurry at a point. Don't be too picky. Just start reading. Maybe look for some books on parenting teens with autism since you said the books you're looking at aren't clicking. Don't get stuck on the label, just look for what fits. Some of the interventions are the same no matter what you call it.

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3 hours ago, JumpyTheFrog said:

 The Manipulative Child.

I haven't read that, but that's interesting insight into his social thinking if he's actually manipulative. You can read that Social Thinking article I linked and see where you think he fits.

My ds has ASD2, and he's not manipulative because he doesn't have the social thinking to do that. Now he can work a situation a bit, but if you ask people who have spent a lot of time with him whether he manipulates, the answer is no. But you go down to ASD1, ADHD, some of those other profiles, you get a different mix. So it's just a really good observation on your part that you're looking at how he thinks through situations, what he notices of cause/effect, how he problem solves. 

Someone mentioned for you the test of narrative language, the test of problem solving, and pragmatics testing. You're probably going to get a lot of actionable information if your psych evals include those. If they don't, they're things an SLP can do if you find the right SLP. Psych evals tend to be surprisingly worthless, because they don't actually give you much actionable information. It's the lower priced SLPs doing all the grunt work, lol. 

So don't blow your whole wad on psych evals if they don't include this important stuff. And to get the price down, you can find an SLP and get this stuff done ahead. 

-metalinguistics (CELF metalinguistics, CASL2)

-pragmatics

-test of narrative language

-test of problem solving

You can google the tests and see what they cover. You probably already have a sense of whether they're areas that will show something.

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He had/has some definitely sensory issues as well. From ages 2-5 he cried or screamed every single time I washed his hair (I don't remember it being a problem before then). Then after he turned 5 he finally managed to start keeping it down to a whimper, until eventually he could handle it it without crying.

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2 hours ago, PeterPan said:

I haven't read that, but that's interesting insight into his social thinking if he's actually manipulative. 

The main technique I remember from the book is this: When an unwanted behavior occurs (presumably that doesn't go away with normal parenting strategies), make the child "park it." This means the parent makes him sit until he's quiet and seems ready to comply. The idea is for the parent to be there but be boring and not interact, lest they get sucked into an argument or provide an audience for a child who seems to seek drama. Once the child seems ready, give the same instruction that he was resisting before. If he starts up with an attitude, repeat the process until he finally gives in an complies.

I read the book when he was about 9. I think our record was the day I spent two hours making him park it on the stairs until he finally decided he'd rather do whatever I said than be stuck there anymore. (I don't remember what he was supposed to do, but it was probably something dumb like empty the dishwasher.)

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Food dyes make him go nuts. He's been off them for a few years, but they used to result in him have meltdowns over nothing and hitting himself in the head or bang his head on the wall.

Maybe I already mentioned this, but not eating enough makes him beyond hangry, but act like a monster. (Now that he's growing like a weed he finally recognizes hunger before reaching this stage.) I can't tell you how many times over the years he acted like a total a**hole or possessed or something and then would turn back into a person about 10-20 minutes after eating. The worse he acted, the more he'd resist eating. Sometimes I'd have to just leave something he couldn't possibly turn down on the table and walk away without commenting.

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2 hours ago, JumpyTheFrog said:

Food dyes make him go nuts. He's been off them for a few years, but they used to result in him have meltdowns over nothing and hitting himself in the head or bang his head on the wall.

Maybe I already mentioned this, but not eating enough makes him beyond hangry, but act like a monster. (Now that he's growing like a weed he finally recognizes hunger before reaching this stage.) I can't tell you how many times over the years he acted like a total a**hole or possessed or something and then would turn back into a person about 10-20 minutes after eating. The worse he acted, the more he'd resist eating. Sometimes I'd have to just leave something he couldn't possibly turn down on the table and walk away without commenting.

Quoting this one because it's last, but a lot of the other issues we have had as well, with two out of three children.  The food issues I reached out to the hive a couple of months ago because my son was having SUCH HUGE emotional meltdowns that disappeared after eating.  He's always needed extra snacks during the day since he was young (I remember him being four and screaming and kicking his sister, getting a spoonful of peanut butter, and then hugging her and telling us he loved us so much.   It was unreal). It died down in the middle years and now at 14/15 is back full force.  He now eats a steady stream of healthy snacks -- egg sandwich, yogurt, cashews, lunch, carrots and hummus, dinner, and small bowl of cashews again if he needs it at night.  It's made a huge difference.  I have been meaning to check his blood sugar levels throughout the day thinking it might be reactive hypoglycemia, but for now the snacks are working. 

Both my adhd daughter and my son (who is being evaluated possibly for ASD) struggled with holidays.  My daughter DIDN'T cry at her own birthday for the first time (at 21) and my son is doing better.  I always dreaded birthdays and Christmas.  The expectations were always so high, or anxiety about which presents he had asked for and did or didn't get, or should he not have asked for something, does he regret it, etc etc. 

I have heard good things about Ross Greene The Explosive Child?  Or something like that. My daughter was SO CHALLENGING.  And everyone else around me seemed to have it together and we were so dysfunctional.  Like calling the school to ask for them to give her a suspension for skipping class, like her sneaking any and all electronics into her room, as well as all types of chocolate, ice cream, etc.  We fought non stop.  I was not a great parent, especially not knowing about the MAJOR anxiety or the adhd, but I never let anything get to brinksmanship levels. No ultimatums.  I gave up on all consequences, let her have her own way, and worked harder on giving her space.  She came around eventually, I think because I stopped being the enemy, and due to maturity and hormones letting up.  She's now a huge success and we have a great relationship.  She works very hard on the adhd, but she knows I've got her back.

I grew up Southern Baptist and my parents used all the books.  I was pretty scarred from it.  Lots of shame, and SPANKINGS.  Ugh.  None of it helped, and my rebellious streak was much longer than my daughters, and could have gotten me into actual danger.  It was a mess. 

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2 hours ago, SanDiegoMom said:

SPANKINGS. 

Yes, that is my tradition as well. Problem is they proceed on the assumption that the dc is getting CAUSE/EFFECT. I whacked your butt, you don't like it, you get that I whacked your butt because you did xyz, so you will choose not to do xyz again. But with kids with sensory issues, all they get is SEVERE FRIGHT/FLIGHT stress responses to the sensory input of the spanking!! None of that cognitive is being happened and the RIGHT lesson is not being learned.

My ds concluded from spankings that THE BIGGEST PERSON IN THE ROOM IS THE BOSS. You know how dangerous that is? So Daddy is the boss, Mommy is nothing. Only the most physical person runs things. Dangerous, dangerous, dangerous. Takes a long time to undo that, and that's the screwy autism stuff. Not understanding social structures, not understanding WHY we do things. And we can be really pragmatic in the short run, but it can make it more dangerous in the long run.

I got good mileage from a number of books but particularly one on Stuck Strategies. There was this one where you say "Do it or don't" and suddenly, whether the dc does it or not he's complying with you!! Hahaha, so awful. That's the one I pull out when I need something. :biggrin:

 

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On 1/21/2021 at 1:46 PM, JumpyTheFrog said:

How do your kids handle holidays? From ages 7-9 DS ruined my birthday every year. He seemed to get these unreasonable, unspoken expectations around holidays that resulted in massive meltdowns or fits. After three years in a row, we decided to stop telling him it was my birthday. I think at 13 he was finally able to handle it without ruining the day.

Christmas was always difficult. My son needed to know what he was likely to get, and if we had a relative that might not get him anything he asked for, he had to process that ahead of time.

22 hours ago, PeterPan said:

My ds has ASD2, and he's not manipulative because he doesn't have the social thinking to do that. Now he can work a situation a bit, but if you ask people who have spent a lot of time with him whether he manipulates, the answer is no. But you go down to ASD1, ADHD, some of those other profiles, you get a different mix. So it's just a really good observation on your part that you're looking at how he thinks through situations, what he notices of cause/effect, how he problem solves. 

I don't know anything about the book either, but I have several thoughts on this...some kids can be manipulative and have poor social skills. Like, the manipulation is a sign that other social skills are not intact or mature. Or, they can have multiple diagnoses. I think it's possible to be manipulative and be on the spectrum, but it's not that straightforward--sometimes, for instance, the behavior would be manipulative from someone else because the reason for the behavior is totally different. Other times, straight manipulation, but I will say that it might tell on itself--the manipulation will often be not very sophisticated, at least in a child with autism.

There are also some overlaps with other diagnoses. My MIL can act very ADHD, very autistic, and VERY borderline personality disorder. I think at least two are true, the third might be as well. She's very manipulative, but she's not good at it. She is, however, successful at being manipulative due to really bad family dynamics, so she's motivated to do it again.

19 hours ago, JumpyTheFrog said:

The main technique I remember from the book is this: When an unwanted behavior occurs (presumably that doesn't go away with normal parenting strategies), make the child "park it." This means the parent makes him sit until he's quiet and seems ready to comply. The idea is for the parent to be there but be boring and not interact, lest they get sucked into an argument or provide an audience for a child who seems to seek drama. Once the child seems ready, give the same instruction that he was resisting before. If he starts up with an attitude, repeat the process until he finally gives in an complies.

I read the book when he was about 9. I think our record was the day I spent two hours making him park it on the stairs until he finally decided he'd rather do whatever I said than be stuck there anymore. (I don't remember what he was supposed to do, but it was probably something dumb like empty the dishwasher.)

I have mixed feelings about this on several levels and did engage in this kind of thing, when absolutely necessary, when my son was younger and I had no other tools. It can work, but it doesn't always work for the reason you think it worked. So, a less harsh version of this can be putting a tantruming toddler in his bed, and it can work because the child actually needed a sensory break and had no idea. I had a kid that would not back away from things that just made stuff worse--he wanted to tackle it, but he didn't have the maturity. He would choose a task that was wildly age in appropriate (needed more coordination, etc.), and he would persist until it was done, even if it meant days of screaming and fit throwing. Why did I allow this, you ask? Because the alternative was serious, serious meltdowns that were far worse, and I had no diagnosis or BCBA to help guide me. And he was two or less, but he was gifted and super out of sync with what other kids that age could do and understand. I'd already been accused by multiple people (including a professional counselor) at that point of lying about what he was like, and it had had some potentially terrifying consequences already by then. 

Also, attempts at manipulation are somewhat relative. If no one thinks the need is real, they won't help meet that need, so the child might do "manipulative" things to get the need met. At around 6-9 months, my son would not sit down in his car seat unless I told him where we were going. He would arch his body and throw himself onto the floor of the car. If I told him where we were going, he politely sat down. This is the kind of thing that got me branded as a liar, but it was true. And my son knew the difference between a trip to Kroger and to church. Later, he needed me to tell him how long the drive would be if it was unfamiliar (we used units of Thomas the Tank Engine episodes or Curious George). He didn't ask, I had to figure this out myself by trial and error.

19 hours ago, JumpyTheFrog said:

Food dyes make him go nuts. He's been off them for a few years, but they used to result in him have meltdowns over nothing and hitting himself in the head or bang his head on the wall.

Maybe I already mentioned this, but not eating enough makes him beyond hangry, but act like a monster. (Now that he's growing like a weed he finally recognizes hunger before reaching this stage.) I can't tell you how many times over the years he acted like a total a**hole or possessed or something and then would turn back into a person about 10-20 minutes after eating. The worse he acted, the more he'd resist eating. Sometimes I'd have to just leave something he couldn't possibly turn down on the table and walk away without commenting.

We didn't have food ingredient issues, but we did have to set a timer for snacks for a while, and when he was little, he literally ate all the time. From infancy through about age 6, then a blip again at age 8, and then solid again from then until age 14 or so. He had his huge growth spurt at 12/13, for reference. He passed up most kids his age at his the 99% ile for height that year. Anyway, he's wiry and muscular, but quite slim. As an infant, his height percentile was significantly higher than weight, and his doctor asked what he ate--they said they weren't concerned, but they wanted to be sure it wasn't a downward trend. I started listing stuff off, and they stopped me about halfway through my list, lol! They could not believe how much he ate. Food was actually one of the things that made the three years he was in school difficult because he needed to eat nonstop, and he couldn't do that at school. 

Edited by kbutton
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19 hours ago, kbutton said:

I have mixed feelings about this on several levels and did engage in this kind of thing, when absolutely necessary, when my son was younger and I had no other tools. It can work, but it doesn't always work for the reason you think it worked.

I didn't read the book until he was nine, so I don't think I had any unrealistic expectations when using the technique. I can see that it might not work for a younger child with a diagnosable condition. I had to use it yesterday, in fact. At 14 he is certainly capable of going downstairs to make meatballs. He just didn't feel like doing it without expressing how annoyed he was at having to do it at that time. So he had to park it twice for a minute or two each time, and then he finally decided to go downstairs without complaining.

He seems to find it easy to view us as the enemy. I'd say his "love tank" leaks easily. He's the kind of kid who would like a parent doing fun stuff with him for far more hours than any parent has available. If we spend extra time doing fun stuff with him he is usually more cheerful and cooperative. 

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I'm sorry to jump in without being part of the original discussion but I wouldn't medicate without a full eval- not necessarily neuropsych or ASD specific, but just a general psych eval to see what's going on. Then, I'd take that psych eval with a grain of salt because IMO they are more like opinions than anywhere close to a fact so if something seems off about the diagnosis (or lack of one) then I'd recommend a 2nd or 3rd opinion until you see consensus.  

Has anyone mentioned bipolar 2? It's one of those things that people end up having several wrong diagnoses and many wasted years on wrong meds because it can look similar to other things if you aren't looking for it. 

 

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12 minutes ago, Paige said:

Has anyone mentioned bipolar 2? It's one of those things that people end up having several wrong diagnoses and many wasted years on wrong meds because it can look similar to other things if you aren't looking for it. 

You are the first to suggest it. I just looked at WebMD and a few other websites for the list of symptoms. It doesn't seem to fit. ADHD, however, fits very well. Anxiety seems to fit, too. I know he has many negative thought patterns by the way he talks. However, he doesn't cycle through anything or have signs of hypomania like the bipolar 2 lists mentioned.

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  • 4 weeks later...

Have you considered also getting an OT eval for the sensory? You could look for someone who does a lot with sensory, possibly trained in interoception.

If you want meds for the (obvious) ADHD, your MD will do that. S/he may or may not want the psych eval. MD usually does their own, and there can be a wait for those appointments. Might be something to start checking on.

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  • 2 weeks later...

We had the appointment with the neuropsych and have the testing scheduled for March and April. By late April we should have the report. Thank you for your suggestions everyone. Discussing this with you here made the appointment more efficient because it led to me having specific examples ready to mention.

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  • JumpyTheFrog changed the title to ADHD Diagnosis for 9th Grader - Update on May 13 Post

The diagnosis is in: ADHD and ODD. She thinks (and I am inclined to agree) that the ODD might be caused by anxiety. I think much of this anxiety is related to his relative deficits in auditory working memory.

IQ Test Results:

  • Verbal Comprehension - very high
  • Visual Spatial, Fluid Reasoning, Processing Speed - above average
  • Working Memory - average, but there were huge differences between sections. For picture spans (visual memory), he got 84th percentile but only 37th percentile for digit spans (auditory memory).

So it is not our imagination that what we say often gets scrambled in his brain. Would I be correct that under stress his auditory memory would decrease? Is this why when he is starting to get worked up he ends up twisting what we've seen into something far worse?

 

Reading Achievement Testing:

  • Reading and Basic Reading - average
  • Broad Reading - high average
  • Reading Fluency - superior
  • Letter-Word Identification, Word Attack, Passage Comprehension - average
  • Oral Reading - average
  • Sentence Reading Fluency - very superior (98th percentile)

 

It seems like quite a gap between some of these skills. I need to reread the report a few times to understand what the differences between these categories mean.

 

 

 

 

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Math Achievement Testing:

  • Math, Applied Problems - Superior
  • Broad Math, Math Calculation Skills, Calculation - High Average
  • Math Facts Fluency - Average
The description says that Math Facts Fluency involved simple calculations with a three minute time limit. Should I be concerned about a 30 percentage point gap between this and the other sections? I am inclined to think DS raced through it and made careless mistakes.
 
Written Language Achievement Testing
 
  • Written Language, Broad Written Language, Sentence Writing Fluency - High Average
  • Spelling - Average
  • Written Expression - Superior
  • Writing Samples - Very Superior
She was extremely impressed with his writing samples. This is from my formerly writing resistant kid! In 4th grade I started him on WWE 2 because he thought writing two sentences was torture. This year he is doing the Ancient History IEW theme book. It has been the perfect program for him.
 
We already knew spelling would be low. Going through Apples and Pears brought his spelling scores on standardized tests up from about 20th to 47th percentile. I have MegaWords, but I'm trying to decide if it worth the time to add it in. Any thoughts?
 
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ADHD Testing:

  • Inhibit, self-monitor, behavior regulation index, emotional control (worst score on this test), emotion regulation index, working memory, and global executive composite all had clinical significance.
  • Plan/organize, task-monitor, cognitive regulation index - potential clinical significance
  • Shift, initiate, organization of materials - no significance
 
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There were several more tests related to ADHD and ODD, but they basically had similar results to what I reported above, so I won't go into them. One of the tests did look for anxiety and that came back with a low score, meaning not a problem. I think his anxiety is situational. We already know needles have been a big problem. I think much of the rest of it is feeling like we are always changing what we said when it is really him mishearing or misremembering what we say. I think we will rely much more heavily on writing out instructions. (We already do this for school and chores.)

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I asked about ASD. She doesn't think he has symptoms of it, although he did have trouble telling her how people recognize their feelings. So he needs work on how to tell if he is feeling ___________ so he can learn to deal with it appropriately.

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FWIW, we found it helpful to be on add meds for a while before we sorted out other things in the list like auditory processing.  You may find enough bump just from meds that many things sort out. (We found this to be true with one kid, and not with another.)

Just FYI, auditory processing can be wonky in a variety of different ways, but there are filters that one can wear similar to a hearing aid that can help sort some things out.  This is not well known in general psych circles, and even in many APD circles. Here's a link to one of the top US places, in case you need the info later: https://www.ablekidsfoundation.org/central-auditory-processing-disorder-services/management-solutions/  

My other recommendation is: Bright Kids Who Can't Keep Up, which has to do with slow processing speed, but has some cross-applications.

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I’m Autistic and have a similar (but stronger) skew between visual memory (99th percentile) and auditory memory (lists of ordinary objects) (2nd percentile).  I know she didn’t see it, but I’d still keep Autism in mind.   

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Posted (edited)
5 hours ago, JumpyTheFrog said:

him mishearing or misremembering what we say.

So you're going to get an APD eval and SLP eval to follow up if anything flags?

4 hours ago, prairiewindmomma said:

add meds for a while before we sorted out other things in the list like auditory processing.

Yes, the ADHD and poor working memory holds back the long term retention, which might explain the spelling.

4 hours ago, prairiewindmomma said:

auditory processing can be wonky in a variety of different ways, but there are filters that one can wear similar to a hearing aid that can help sort some things out.  This is not well known in general psych circles, and even in many APD circles. Here's a link to one of the top US places, in case you need the info later: https://www.ablekidsfoundation.org/central-auditory-processing-disorder-services/management-solutions/  

My dd has an AbleKids filter, but personally I would get a proper APD eval (which theirs isn't) and see if Buffalo method protocol or something similar (like the ProEdInc books) would work. Then if that isn't enough, then try the filter. Having done both, that's the order I would do them in. We did the filter first because dd was struggling and needed options immediately. Doesn't really solve the problem, only helps. And it sounds like this dc is having it in places where the filter wouldn't make a difference (not a lot of background noise).

5 hours ago, JumpyTheFrog said:

emotional control (worst score on this test),

Interoception. Get the curriculum, do it with him.

5 hours ago, JumpyTheFrog said:

One of the tests did look for anxiety and that came back with a low score, meaning not a problem. I think his anxiety is situational. We already know needles have been a big problem.

You do see the contradiction here? LOL So anxiety is complicated and generally under diagnosed. It's not like you run him through the motor screening at the car shop and get a mathematical answer. For me, I have constant eating at me low level (masked) anxiety that is due to a b6 issue, easily treatable once I actually found the cause, meaning I'm off the anxiety med, hurray. NBPF3 is the gene for that particular one. And there's situational stuff. The low level constant eating at is *different* from my other situational anxiety. That causes me to pace and get agitated and it's the more visible stuff. 

So I would not assume a "test" clears him on anxiety or that it's just situational. If you work on Interoception (which remember your eval showed as actually his worst thing), then HE can begin to tease it out for himself. Unfortunately, the ADHD meds can both improve anxiety and up it. If his academics are great and his ADHD isn't bothering him, you could wait, do the interoception work, and let him decide what he wants treated first. There's nothing like self-advocacy. He has to deal with this for the rest of his life so he has to self advocate.

For situational stuff, that's where you use mindfulness and strategies. For the very day, low level eating at you, that needs a chemistry solution. 

4 hours ago, JumpyTheFrog said:

I asked about ASD. She doesn't think he has symptoms of it, although he did have trouble telling her how people recognize their feelings. So he needs work on how to tell if he is feeling ___________ so he can learn to deal with it appropriately.

Honestly it's idiotic. Did she do the ADOS or didn't she? I had a big name, top of the line, literally he probably wrote some of the questionaries you filled out idiotic donkey PhD neuropsych tell me my ds was not on the spectrum. His current diagnosis? ASD2. Not ASD1, not piddling, not iffy. ASD2. 

How did she get to the ODD? ODD, poor emotional/self awareness, anxiety, I mean how much do we need to keep talking till we get to ASD? If you don't go to an ASD expert, you don't get the ASD question answered. You got answered that he doesn't have a learning disability. You didn't get answered if he has APD, SPD, or ASD. Keep going on your evals. You don't win by stopping now. What she did was say wow iceberg, and she didn't tell you what's underneath. 

I hang on an ODD FB group, and I swear they're talking ASD. And some moms finally fess up their kids are diagnosed with both. 

5 hours ago, JumpyTheFrog said:

tests

There is no test. You filled out questionaires and with the stories you had, the things you've noticed, that's what flagged or didn't flag. None of that is perfect or infallible. I've filled out the GARS umpteen times, every time differently. This last time my ds actually scored closer to ASD3!! His behavior is better than ever. I just NOTICE more and can REPORT more and therefore more flags. If you notice less, you report less. Same child, but the scores change.

The ADOS is intriguing (though not infallible) because it attempts to *elicit* characteristic behaviors. So if someone is highly skillful on the ADOS and administers it without seeing much AND says they don't see it in other ways, that says a lot. But that's as close to a "test" as we have for ASD. And anxiety, like I said there are so many facets and people mask. I never knew how I could feel till I started the treatment. I thought that constant low level eating at me was just how I was. Not everything is going to show up on questionares. The person has to become self aware enough that they can advocate for themselves.

I've seen data that something like 85% of the time when parents think a dc is on the spectrum, the dc is. So just the fact that you seriously thought he was means it's statistically likely he is. It's more likely that the psych is wrong than that your parent gut is. And given that the psych had tons of flags and found a single excuse to blow it off, that's all the more rich. That's when you want a 2nd opinion by an expert.

How old is this dc? Would it make a difference?

I was watching the SNL open with Elon Musk. Did you see it? The world is such a cruel place. It's good to know yourself and it's good to have the freedom to decide what to share and what not to share.

Edited by PeterPan
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Posted (edited)
On 1/18/2021 at 12:50 PM, JumpyTheFrog said:

He would regularly disappear from the table in the middle of lunch to go play.

Does he still do things abruptly? 

On 1/18/2021 at 12:50 PM, JumpyTheFrog said:

He finally figured out that the empty feeling in his stomach meant he was hungry.

Interoception.

On 1/18/2021 at 12:50 PM, JumpyTheFrog said:

Lying is still a big problem. Not noticing stuff he just said or did is another problem. We know he deliberately lies, but at least sometimes he seems to mix up reality and his imagination.

Suggestion. You might look at the Social Communication Profiles on the Social Thinking site and see where he seems to fit. Lying, like actual lying, requires some significant social thinking. It would be interesting to see where he falls in the profiles. Given that he runs 2-3 years young from what you're saying (compared to his brother), I guess I'm wondering if his lies are in a pinch lies or the kind of things you'd expect a younger dc to say. When you adjust for the maturity discrepancy, would the behavior be more typical? Imaginative, disconnected from reality comments might be appropriate to someone younger developmentally and make sense if there are delays. 

And actually the reason I ask is that being *very * disconnected is really concerning. You'd like to see this falling into a pattern that makes sense. 

Are you planning to treat the anxiety? Or she didn't see it so you're not pursuing it? But you think it's causing the ODD type behaviors? I agree that decreasing anxiety is a high priority and can improve behavior. We've had a long road with my ds with that. And yes, decreasing anxiety can improve compliance and his ability to get there.

Did she give you any good book suggestions? Or that's coming in a written report? 

https://www.amazon.com/Stuck-Strategies-What-Students-STUCK/dp/1937473996/ref=sr_1_1?dchild=1&keywords=stuck+strategies&qid=1620942481&sr=8-1  This is on the young side but still good. If you could *borrow* it from somewhere, it would be worth your time.

AAPC is the publisher of that book and they have tons of other amazing stuff. You might peruse their site for ideas. 

 

Edited by PeterPan
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I do agree with doing a Buffalo before going on to filtering.

True story: Jack Katz’s practice did my older son’s APD testing. (He helped design the Buffalo.) He opened a practice in his semi-retirement back in 2004. Don’t know if it’s still open. He’s still alive and kicking, last I heard, living his best life in the suburbs. He is in his late 80s now.

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7 hours ago, prairiewindmomma said:

I do agree with doing a Buffalo before going on to filtering.

True story: Jack Katz’s practice did my older son’s APD testing. (He helped design the Buffalo.) He opened a practice in his semi-retirement back in 2004. Don’t know if it’s still open. He’s still alive and kicking, last I heard, living his best life in the suburbs. He is in his late 80s now.

What is this Buffalo?  My oldest doesn't seem to have difficulty with auditory processing.  We had a test in the sound booth with an audiologist and it looked at a bunch of things.  But they have significant difficulty with getting overwhelmed by sounds.  EVERYTHING is too loud.  They couldn't handle public school and developed ptsd from the sounds there.  It's a real problem.  Some days they can't handle anyone talking in the house.  The neighbor mowing the lawn or a dog barking are huge issues.  I have no idea how to help them cope in the real world. 

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On 5/13/2021 at 1:19 PM, prairiewindmomma said:

Just FYI, auditory processing can be wonky in a variety of different ways, but there are filters that one can wear similar to a hearing aid that can help sort some things out. 

<snip>

My other recommendation is: Bright Kids Who Can't Keep Up, which has to do with slow processing speed, but has some cross-applications.

The auditory processing problems mostly seem to occur when we are giving him instructions. If we are just talking about everyday things (or if I am reading to him) there doesn't seem to be a problem. Does this point to anything in particular? As far as I know, testing digit spans was the only part of the testing related auditory working memory.

I will look into this book.

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No, it's been years since just disappearing from the table while eating was a regular problem. Sometimes he'll go into a room for some reason and get distracted and I'll find him reading comic books instead of whatever he is supposed to be doing. 

I'll continue to treat the anxiety with the supplements that have been helping. 

PeterPan, where should I start on the interoception? Buy the curriculum? She seems to have several different products.

I looked at the Social Profiles a few months ago. I'll read them again and see where I think he fits.

Here were the book suggestions in the report: 

  • The Explosive Child, by Ross Greene

  • The No Wimpy Parenting Handbook, by Dr. Kristen Wynns

  • How to Talk So Kids Will Listen and Listen So Kids Will Talk, by Adele Faber and Elaine Mazlish

The report didn't talk about interoception at all except for mentioning he couldn't really say how people tell what they are feeling. Is this a major oversight on her part or is it typical for this to not be covered. Is it more of an OT thing?

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On 5/13/2021 at 5:36 PM, PeterPan said:

How did she get to the ODD? ODD, poor emotional/self awareness, anxiety, I mean how much do we need to keep talking till we get to ASD?

<snip>

I've seen data that something like 85% of the time when parents think a dc is on the spectrum, the dc is. So just the fact that you seriously thought he was means it's statistically likely he is. It's more likely that the psych is wrong than that your parent gut is. And given that the psych had tons of flags and found a single excuse to blow it off, that's all the more rich. That's when you want a 2nd opinion by an expert.

How old is this dc? Would it make a difference?

Here were the questionnaires/tests done for ADHD, emotional, and behavior stuff:

  • Behavior Assessment System for Children, 3rd edition (BASC-3)
  • Behavior Rating Inventory of Executive Function, 2nd edition (BRIEF 2)

  • Vanderbilt Assessment Scale

I don't know what ADOS is, but we did the psychoeducational testing, not the full neuropsych testing (which I think has ASD testing) based on the initial meeting with her.

DS is 15. I've never really thought he was on the spectrum. The reading I've done about it doesn't really seem to fit. ADHD and anxiety seem much closer. DH and I don't think the ODD is quite right. Unfortunately, all the information she had about behavior came from us (and from the self-questionaires he raced through with little thought). He doesn't have any outside teachers to fill anything out, and he his current sports coaches have had him for less than a year. I would assume that ODD would show up outside the home. Even when he was younger and at his worst behavior (age 9), while he might seem distracted at practice, he never gave any of his coaches a hard time. The difficulties are almost completely around school. He is much more cooperative about chores. For example, two weeks ago he spent about 15 hours in one weekend helping us install new flooring. I don't think he complained once. He just seems to prefer projects to regular school work.

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The first time my daughter was assessed for ASD, she came out with an ODD diagnosis.  It didn’t feel right to me.  She subsequently got ASD.  (Turns out she could pass the preschool ADOS, but not the elementary school ADOS...)  You are definitely allowed to question a diagnosis.

I hope the Social Thinking profiles are helpful for you. In a lot of ways they are more meaningful than a particular diagnosis. 

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