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Janeway

Mean, negative, and extreme ADD

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The question is..does this sound like only ASD and ADHD (no hyper in this)

 

The 9 yr old has a lot of problems. He is very negative and taunts his little siblings a lot and gets very angry and slants everything toward how angry he is at everyone for slighting him. Example...we took him to a festival last weekend. We let him do activities, we bought him treats which includes hamburger, chips, fries, Dr Pepper, and a funnel cake. Before we left, we bought him a wooden sword and shield set and even bought one for his little brother just so he would have someone to play with. His little brother was not asking for one but thought it would be more fun for 9 yr old if both had one. We get in the car and are driving home and he was perfectly happy when he suddenly remembered he wanted the ipad. So he asks if he can have the ipad as soon as we get home. I said "we just finished at the festival, I was hoping you all would play together a little bit, so let's just talk about that later." Generally, I save the ipad for bad weather days and it is actually more for the evening after dinner. It was only about 3pm at this point. He started yelling and kicking "oh come on!!!! No fair!!!!! I never get to do anything I like!!! I am just a slave!!!" And this was not a whine type scream. This was more of a loud yell, like where if he were a grown man yelling like that, people would have felt threatened. A couple days later, during the week, he said he would like to have Frosted Flakes. Then, the next day, I went to the grocery and for groceries and got Frosted Flakes too.  I was thinking specifically of him when I got it. But when I walked in the door and he saw the Frosted Flakes, he started yelling and bellowing "come on!!!!!! That's not fair!!! You got Frosted Flakes and I wanted them!!!!" He just automatically defaulted to anger. I looked at him with a shocked look on my face and said.. "yeah, you wanted them, that is why I got them, you asked for them." And then he calmed down in an instant and said "oh, yeah." And then he went on and ate them. He is currently diagnosed with ASD, but his DX was at 3 yrs old. I am betting when we do a re-eval, something else will be added. We plan do a re-eval around 12 yrs old. We have a big deductible and know an eval is recommended when he goes through puberty so we do not want to try to go one now (or in a year, however long the wait list is now) only to have to return a year or two later for another one. 

 

He basically does his school work, not a ton of problem there. However, when I am teaching him, he wants to talk about everything else. If I try to re-direct him, he will blurt out at me screaming "I was talking! No one ever listens to me!!!" This is completely untrue. This is just like all the other times where he claims he never gets to do anything, as we leave a festival. Or claiming he is a slave when he barely does chores. His chores are fit for a 3 yr old. 

 

Today is a good example of the problem I am having and wondering if I should step away from interactive curriculum. On the other hand, with ASD, the interaction might just be a good learning time for him, even though he has a long way to go. Today, I had him do his warm up work. Then we started on the math lesson. It was on weighing things. The plan was to go over the lesson and then go to the grocery store to weigh things and check out the measurements and weights on the products at the grocery. One of the first pictures showed a scale where the needle was pointing at 2 LB. I asked him to tell me what the weight was...he looks around and says "what kind of car should I get when I grow up?" and I say we are not talking about that right now, we need to focus on the math. To let you know, he gets plenty of breaks between lessons and I keep lessons short. He has no trouble focusing on something he wants to do. He moves on to other unrelated topics. I kept telling him to look at the page and tell me what the sugar weighs. He glances at it but is dismissive of me. Finally, he gives me the answer but complains about his brother. At this point, 3 yr old is asking for help with his train. I tell 9 yr old that we have been doing math for a while now and this is not fair to the 3 yr old. The 3 yr old should get to have a mom too so 9 yr old just needs to look at the next problem. I explain what the scale is doing in the next problem and even tell him "so this is 7 pounds." Then I say to him "how much is this?" and he stares at it a while and finally gets around to saying "6 pounds." I say...ok, let's back up. Let me explain this again. He starts screaming at me that I am not listening to him, he already answered, it is 6 pounds. Now the 3 yr old is crying because I have not even read him a book this morning. 

 

This feels like more than ASD and ADD. He is so different from my older child who has an ASD DX but no ADHD. Also, any suggestions on things to do when working with him to improve things now? He loves handicrafts and gardening and everything. He does not struggle academically at all. And any suggestions as to what might be going on with him so I can research ways to help him? Also, I do not think ODD would even be it because even though he argues with me, he is actually kind of decent about doing things I asked of him. He just cannot focus at all or remember what he was doing for five minutes.

 

 

Edited by Janeway

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It sounds pretty standard to me for ASD with ADHD. Whether it be inattentive or hyperactive or combined, kids with ADHD often have impulsivity issues. So, topic maintenance is a social skill, but yelling about the Frosted Flakes is a social miss (they were for him) and an impulsive thing--his thoughts spontaneously went off a cliff and came out his mouth negatively. 

On evals--you might get a better eval if you do one now even though you know you have to do it again later. You really want to know where he is socially and with language. Can he use language to problem-solve, etc. There are numerous tests for teasing this out--The Test of Narrative Language, Test of Problem-solving, Social Language Development Test.

On being like your other kiddo--ADHD doesn't look the same on all the people in my home. They each have their own way of combining strengths and weaknesses to maximize parental stress-er-to be themselves while happening to have ADHD. 😁

For help--I think you might want to find a professional who can help with self-regulation and with social skills. Depending on what you have available, this could be more than one person. We've had the most luck on social/self-regulation using a behaviorist who worked on social skills using curriculum she'd chose based on his strengths and weaknesses. She'd also use some things I would find here and there. For language issues, we had to find the right curriculum and then find an SLP who would try it (Story Grammar series by Mindwing Concepts). 

You might need to use visual supports (can be pictoral, but often a list with visual cues, like times or first, next, last works) to help your son know what to expect during any given event or day.

As for a diagnosis being added, some of what could be causing the problems probably already falls under the umbrella of ASD or ADHD from what you are describing; however, there may be a nuance to it that I am not picking up on. 

I would not push off evals--a lot has changed in autism research and therapy really fast. Professionals are starting to catch up. Tests are being revamped to catch older kids with issues that weren't evident when they were first evaluated. There is a lot you might be able to access with updated data on your son. You would also have a chance to compare/contrast your kiddos while talking to a professional, which could help you better understand why same/similar labels don't mean that they have the same profile of needs and difficulties. 

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Part of what he's dealing with is called attribution. I was just reading a book on it. I'll try to find the title. Yes, it's a challenge, and yes it's part of the ASD and unclear thinking.

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                                            The Eclipse Model: Essential Cognitive Lessons to Improve Personal Engagement for Young People with Asperger Syndrome, PDD-NOS                                      

Here's the book. It's older but your library might have it. Older like 10 years, haha. In this field, that seems outdated. Really though, it had ideas *I* wasn't up on. Apparently attribution theory was a big deal a while back because my friend with a phd in education knew all about it. This particular book has some really helpful worksheets and steps to go through for intervention, and it's very practical, something you'll be able to put to use right away.

Also I'll note in your original story he was given Dr. Pepper, which is high in caffeine. If he has a COMT defect the caffeine, which is a methyl donor, could bring out all kinds of behaviors and irrationality. COMT defects are implicated in schizophrenia and high methyls are implicated in bipolar. You could run genetics and see what you're dealing with.

 

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1 hour ago, Janeway said:

I asked him to tell me what the weight was...he looks around and says "what kind of car should I get when I grow up?" and I say we are not talking about that right now, we need to focus on the math. To let you know, he gets plenty of breaks between lessons and I keep lessons short. He has no trouble focusing on something he wants to do. He moves on to other unrelated topics

So you would need to figure out what happens if he's on ADHD meds. Is he on meds for the ADHD and are the meds dosed adequately? Only a narrow segment of kids with an ADHD presentation aren't going to do well on meds. In general, they're helpful. My ds is challenging to teach like that, and we have that conversation with every professional and with the ped frequently, pondering whether we could get a med that would be safe for him (he's had significant aggression) that would help. But if your dc is a good candidate, it would be an obvious step to take.

You could also enroll him in school if you feel he would benefit from increased structure. Reality is school nails structure and school has the finances to bring in enough variety with workers to have a fresh worker with him, keeping him on track. With my ds, most people are worn out within 3 hours of 1:1, so having breaks, variety, a team can help. If you don't like that option, then recognizing that and taking breaks can keep you fresh.

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1 hour ago, Janeway said:

Today is a good example of the problem I am having and wondering if I should step away from interactive curriculum. On the other hand, with ASD, the interaction might just be a good learning time for him, even though he has a long way to go.

Yes, your work with him is keeping him connected. It would be unwise to drop that, I agree. My time 1:1 with my ds is vital keeping him connected and easy to work with, not withdrawn and falling into the aut.

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1 hour ago, Janeway said:

He starts screaming at me that I am not listening to him, he already answered, it is 6 pounds. Now the 3 yr old is crying because I have not even read him a book this morning. 

Ok, so I would get up and walk out and say sorry, I need a break.

When our team came in (behaviorist, ABA workers, etc.) the first thing they taught me was to make MYSELF the reinforcer. I'm the one who makes your life awesome, who plays games with you, who takes you places, and losing me is the biggest loss. So you yell at me, sorry I need a break and won't be able to work with you. And me not working with you has some kind of natural consequence (missing a game time, not being ready to go on an outing with auntie, whatever).

Breaks are good. You can train HIM to take a break and teach him where to break. Breaking in the workspace is ideal, so give him a corner and it's just you need a break and he goes to his corner till he's calming. Screaming isn't acceptable, but at that point telling him to stop won't do much. Oops I need a break, you need a break, I'm ready when you're calm again and walk away.

You have two kids (age 9 and 3) or more? They need schedules and structure. Not like insane undoable structure but a LITTLE structure. Like this is the room we're in, thing one, and I take turns working with you, thing two. That would be a beginning point. And if you do that, you're BUILDING IN those breaks, see? So all of a sudden, he's now getting the breaks he needs to be more calm. That's a trick I noticed in the autism schools. They don't keep a frantic pace and push, push, push like we do at home. Nope, they work, break, work, break. Even if they cycle stations for 45 minutes, there is this pacing and natural breaking in it walking between stations, finishing the task and having time before you switch, etc. Build in breaks.

So if you then have cool things in your list for him, like games (3 minute, a hand of Uno, something brief), then he gets this natural motivator to stay calm and not lose his turn. If he's not calm, he takes a break and you move on to ds3's turn. Then when you come back you resume math, which means he's later getting to Uno, bummer. You always want to be able to "make it better". And honestly it's better to head things off BEFORE they get to where he's screaming. That ECLIPSE Model book had some good cards for perserveration, etc. and the idea was you could use them as a visual to let the person realize as it begins that he's getting stuck. 

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1 hour ago, Janeway said:

He just cannot focus at all or remember what he was doing for five minutes.

Sounds like ADHD meds would help here. With my ds they don't like his attention, but really it's his self-regulation. He has to have breaks to stay calm and gets frustrated and can't self-advocate. But he can sit and work hard for 30 minutes without blinking, page after page, irrespective of topic and level of interest. It's really cockamamie. 

So I think *why* he's having trouble focusing matters, because it's not like a pat answer. There's this discussion that some kids (with a profile like my ds') actually could have a mixed or even a high dopamine level, which is really contradictory when they're calling it ADHD, which is usually low dopamine. Your meds are usually dopamine uptake inhibitors, trying to dam up and keep up the levels of dopamine. But really, if his levels are low and he's compliant and they're just low, you're looking at l-tyrosine or meds. You can do a little exercise, like 15 push-ups with weight added. Is he more focused with a little caffeine? Not much but a teeny tiny amount... It's hard to even get the dose as low as it would need to be.

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If your evals are going to be $$, I would ask what doors you're trying to open. It sounds like you already have your diagnoses and aren't thinking more mental health terms. Will your insurance pay for counseling? He sounds like he has enough language to start some CBT, something metacognitive, something to work on how he's thinking. Or you could get that ECLIPSE book and play around with it yourself. But if you found the right person to do the counseling, it could get interesting.

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It sounds familiar to me, unfortunately.

It sounds like ADHD on top of the ASD to me. I don't think you are wrong to suspect that.

You can ask your pediatrician about how to evaluate for ADHD in your area. You don't need to wait until you are ready to update his ASD evaluations to figure out the ADHD piece.

If you are open to ADHD meds, we have found them to be very helpful with the kind of behaviors that you mention. They are not a magic cure all, but they take the level of hostility way down and improve focus, as well. Which then makes it possible for us to address other issues. When the hostility is raring, it makes it hard to accomplish anything, so reducing that is an important piece for us here.

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DS15 was 9 when the hostility just became unbearable, and we sought the ADHD diagnosis. The symptoms had always been there, but increased at that time. Something about that age....

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1 hour ago, Storygirl said:

DS15 was 9 when the hostility just became unbearable, and we sought the ADHD diagnosis. The symptoms had always been there, but increased at that time. Something about that age....

What did you do then?  The hostility is the worst part. Last night, he spit at his little brother who is a preschooler. I had him hold soap in his mouth for 60 seconds and then sent him to bed for the night.

Edited by Janeway

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On 4/11/2019 at 1:43 PM, Janeway said:

What did you do then?  The hostility is the worst part. Last night, he spit at his little brother who is a preschooler. I had him hold soap in his mouth for 60 seconds and then sent him to bed for the night.

I didn't know what to do. I was at the end of my rope. I was homeschooling all four kids and was barely functioning myself, due to the stress. I decided I had to get help.

 

****Deleted details for privacy. If someone wants to hear our story, you can PM me. ****

 

We continued to work with the psychologist on calming techniques. The pediatrician prescribed ADHD meds, and we spent a few months figuring out what meds did and did not work for DS until we found the right med at the right dosage.

Finally, we had the neuropsych evaluations, and they found a bunch of things other than the ADHD that were having an effect.

So figuring out the ADHD was our first step, but there has been a lot more to our journey.

*** Deleted more details for privacy *****

Meds are a life changer for him, and therefore for our entire family, because we interact with him. Though they do not solve all problems.

 

I would not be able to homeschool him any more. He is too oppositional, and I do not have the internal resources to deal with that all of the time, all day long. I need time away from him in order to be a better mom for him when we are together.

I hope some of that helps.

Edited by Storygirl
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Note that he was diagnosed by a psychologist, a psychiatrist, and our pediatrician, each of whom did their own testing, before we decided to try the meds. We didn't mistrust any of the doctors, but we were thorough. Also we were in counseling. And the pediatrician had us work on mindfulness.

All of that before the neuropsych testing. Which is why I said I didn't think you needed to wait to work on the ADHD.

The neuropsych, by the way, wanted him to do their testing while he was taking his meds. They did not want him to stop them for testing.

It's probably worthy of noting that his behavior and issues with focus were so severe that a school would not accept him. But the NP wrote in the report that they did not notice problems with his attention during their hours/ days of testing.

That tells you how effective the meds are for him.

All of the above happened while DS was nine. His NP testing was completed one month after he turned 10, I think.

 

Edited by Storygirl
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We still have to address the hostility through consequences and constant instruction in proper behavior.

We had a second round of counseling with a different psychologist when he was around age 12. That psych helped us see how we could add more structure and work on our own responses to help curb the hostility.

We already had a lot of structure, but we discussed things in tiny bits. Like how DS would argue and be horrid about eating breakfast. At the time, that was the worst. So we worked with the psych to tweak our schedule and how we were responding to him and talked about how we could do things differently. We would examine what was happening during the hard times and consider what could be done differently.

It was helpful. DH and I can still use what we learned, though we have to remind ourselves to think about things in that way instead of just responding with our natural first instinct response. It's hard to stop and think about how to handle things differently. Sometimes ideas wouldn't work out when we tried them, but sometimes they would, and so we would keep doing those things.

It's not easy. We are not really great at changing things up, because our family gets into patterns of interaction. We have to work at it. And sometimes we forget to work on it.

So, for example, DH and I do too much yelling. And we can be drawn into arguing with DS, because he just argues persistently and will not give up. We can't change DS, but we can work on changing our part of the interaction.

But it's not all about behavioral interactions, but also about routine. Could we eat breakfast at a different time? Could we have DS eat his breakfast before the other kids come down, so that he had fewer people to interact with negatively? Could he choose what he wanted to eat the night before? Could we give him his meds before breakfast or after? And on and on. We talked to the psych in detail like this to help us create structure that worked better for supporting DS.

The psych had us reconsider EVERYTHING about breakfast.

That's just an example, because breakfast was particularly hard at that particular time. But really, there are things that parents can do that might change the dynamic. I can't change DS, but I can work to change the dynamic.

I am not claiming to be wildly successful at this. I feel like I fail a lot. But it's possible to learn some skills.

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It sounds like the ASD son of a friend.

they actually made huge strides in improving his behavior via nutrition and sleeping.

no Frosted Flakes, drPepper, etc.,  basically all Whole real Foods, nothing processed at all, and a lot raw vegetables .  Raw whole fruits as his “sweets”.    Also more natural clothing.  I guess it was very hard to do.  And took awhile to see difference..  However, The change was huge.  It was like he became a different boy.   From someone suddenly flaring up into frightening attack tantrums to ...   very high functioning, not scary to be around. 

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I’m not sure how they helped his sleep, but apparently maybe medication for better sleep, which also helped reduce daytime rages.

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1 hour ago, Storygirl said:

DS lacks social thinking skills, which adds a difficult dimension into things, and this would also likely be the case for your son with ASD. Treating the ADHD does not cure everything.

The meds can give a filter, but they don't solve the social thinking problems. That idea of attribution is where you place blame. So that ECLIPSE Model book has really helpful charts about externalizing and internalizing, thinking through whether it's about you or someone else, whether it's a personal thing or about something beyond you, etc. It's a whole issue they study, how the person with the social thinking deficits is placing attribution or blame or attributing. So they're angry because their attribution is all whack.

If you want a totally different voice, here's a video I started watching from the Key Ministries Fusion Live thing they had last weekend where they explored autism, mental illness, etc. in a families from a christian perspective. 

 

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My 7 year old son has similar behaviors. He doesn't have any official diagnosis but I suspect ADHD. His behavior has improved a lot since we have eliminated artificial colors and annatto from his diet. There is something in soft drinks that he reacts to as well but I have not figured out what. All I know is if he drinks them his behavior deteriorates. I also started supplementing with magnesium and  melatonin which also seems to have helped a lot.  He still has bad days and I suspect there is some other culprit in his diet, maybe preservatives or something. 

Susan in TX

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Definitely sounds like ADHd, but also possibly some depression. In boys depression is often manifested as anger rather than sadness. Having ASD means the world is a foreign place to you..it's exhausting trying to figure out what everyone means and what you are supposed to do. Add in the ADHD which isn't just about attention but also about self control - including controlling your emotions, and yeah, life can suck even though to outsiders it looks great. 

I have a temper. I had NO IDEA that emotional outbursts were a symptom of ADHD until I was diagnosed. Being able to bite my tongue and control my temper was the best part of taking meds. But also, being able to prioritize your thoughts, follow through on things, and not having people made at you all the time for forgetting things makes you less irritable anyway. 

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On 4/19/2019 at 10:57 PM, Ktgrok said:

Definitely sounds like ADHd, but also possibly some depression. In boys depression is often manifested as anger rather than sadness. Having ASD means the world is a foreign place to you..it's exhausting trying to figure out what everyone means and what you are supposed to do. Add in the ADHD which isn't just about attention but also about self control - including controlling your emotions, and yeah, life can suck even though to outsiders it looks great. 

I have a temper. I had NO IDEA that emotional outbursts were a symptom of ADHD until I was diagnosed. Being able to bite my tongue and control my temper was the best part of taking meds. But also, being able to prioritize your thoughts, follow through on things, and not having people made at you all the time for forgetting things makes you less irritable anyway. 

Agree completely. I think it's dependent on personality and some kids with adhd are easier going and others might be more easily irritated and angered.  Emotional outbursts and lack of emotional regulation were the biggest problems for my daughter.  Age helped but meds helped too.  

Also lack of emotional control can lead to anxiety because you always are feeling out of control.  Often, too, my daughter would seek conflict because it meant she was able to release all the pent up fear, anger, etc all on me.  She didn't know how to process it or even what she was feeling in the first place.  She was just anxious, overwhelmed and angry all the time.  

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