Major behavioral issues

Shayna0182 · September 2014

Hi everyone. I'm a long time lurker here on this board, and I think I intro'd several months ago. In the last few months, I've barely posted to this board, so I'll reintro. Basically, I have a 5 year old ds with ASD/ADHD. He was born at 33 weeks and needed some help learning how develop the suck/swallow/breathe reflex in order to take a bottle. After spending 5 weeks in the nicu, we brought him home. We still had feeding issues, but we thought we were through the difficult time. Little did we know. At 9 months, we started noticing just how far behind he was in terms Gross and Motor skills. His pedi recommended EI, which we officially started at 12 months. Between 1-3 we had PT, SLT, and OT. He phased out of the OT at age 2 because he seemed developmentally caught up with other children his age.

At 3, he qualified for Pre-K through the school system because he still needed help with speech and he was still very immature compared with other kids his age. He was very interested in doors, lights and fans. He didn't seem interested in playing with other children, and would have some meltdowns where he would either try to bite someone or himself, or he would scratch himself so hard he would draw blood. Still, everytime we would talk to his doctor or seek out help with a Psychologist at Riley Hospital ( We're in Indianapolis Indiana) we were told that that it most likely due to deficits with speech and there wasn't enough to be able to qualify him with anything else.

He spent last year with a new teacher in the same school, and while he did need some extra help, it was a great year. Behaviorally, he did fine. His first preschool teacher left teaching and started teaching Conscious Disipline, so we had her come to our house for 1 hour a week last year to work him. He loves her, and we felt that he got so much out of it.

Fast forward to now... He turned 5 in June, so he is one of the youngest kids in his class. Currently, he is in a self-contained special ed class, and is receiving private OT once a week. We also attended a conference yesterday to start an FBA to add behavioral help to his day in addition to speech.   The last month has been miserable. Since school has started he has been sent out of the room for cursing in class ( the F word) telling everyone he knows, which included dh, me, my mother, and everyone at school that we're stupid. He screams, tells us no. He receives positive reinforcement, and knows how to use kind words. He is praised for making good choices, but it doesn't always make a difference. There isn't a time of day that he does better than others.   We're at our wits end. I try to stay as calm as possible, but the third he's told me "Fuck you" I have to leave the room, and sometimes, I'll end admit it makes me cry.

We had him evaluated through the school for ASD, and through a Developmental Pedi for ADHD. His doctor thinks that some of his behavioral issues are due to his not sleeping well at night. We severely limit his tv and ipad time at night and have a set in stone night routine which includes a book.   Going to bed isn't the problem, but he wakes up several times at night, so he doesn't usually get a full nights sleep. At his doctor's request, we first tried Guanfacine to help with the ADHD and sleep. It didn't do much, and make him tired and grouchy. We also noticed that it ramped up his meltdowns so we stopped it. His doctor has now prescribed Focalin XR. I have hopes that it will help. At this point, dh and I are so tired and stressed. I don't know what else to do.

hopecounts · September 2014

Kids on the spectrum often have sleep issues. Speak to his OT about whether a weighted blanket would be appropriate for him, it may help him sleep better. For the outbursts this could be tricky, with ASD they could be behavorial and something like ABA would be a good place to start addressing them. With the ADHD I would want to rule out ODD as well since it is a common comorbid and tends to focus on authority figures. IIRC certain ADHD meds do not work well for kids on the spectrum because they can increase problems related to ASD. Is the Dev. Ped. The one prescribing the meds? Did the Dev. ped eval for ASD? It is likely that the increased expectations, change of teacher, etc are causing him to struggle. Change is hard for kids on the spectrum and one of the areas he should be working on is increasing 'flexibility' and comfort level with change. ADHD causes impulsivity, as does ASD so with both his ability to stop and make good choices is likely low. Also with an ASD diagnosis he is likely developmentally 2.5-3 so you are hitting the late terrible twos/fucking 3s right now. This is a hard stage but not unexpected for that age.

Shayna0182 · September 2014

I'll discuss the weighted blanket with his OT. It doesn't hurt to try. He doesn't usually like blankets touching him while he's going to sleep, but we can always put it on him after he's asleep.

His Devel Pedi has been actively involved with diagnosing his meds, and for diagnosing his ADHD. It took time, because he reviewed his old iep from school along with the most current iep and other school reports. We initially met him when the school determined ds has asd. We went for a second opinion through Easter Seals and had an asd and medical eval done with them. They didn't actually determine asd, because of how social he is, but saw ADHD right away.

I can def see change being a huge issue, but at this point I'm terrified he's going to get kicked out of class if he doesn't stop cursing or name calling. Can they do that? I think his teacher is getting pretty frustrated.

Shayna0182 · September 2014

Shayna0182 said:

Hi everyone. I'm a long time lurker here on this board, and I think I intro'd several months ago. In the last few months, I've barely posted to this board, so I'll reintro. Basically, I have a 5 year old ds with ASD/ADHD. He was born at 33 weeks and needed some help learning how develop the suck/swallow/breathe reflex in order to take a bottle. After spending 5 weeks in the nicu, we brought him home. We still had feeding issues, but we thought we were through the difficult time. Little did we know. At 9 months, we started noticing just how far behind he was in terms Gross and Motor skills. His pedi recommended EI, which we officially started at 12 months. Between 1-3 we had PT, SLT, and OT. He phased out of the OT at age 2 because he seemed developmentally caught up with other children his age.

Welcome back.

At 3, he qualified for Pre-K through the school system because he still needed help with speech and he was still very immature compared with other kids his age. He was very interested in doors, lights and fans. He didn't seem interested in playing with other children, and would have some meltdowns where he would either try to bite someone or himself, or he would scratch himself so hard he would draw blood.

This is pretty classic ASD behavior- restricted interests, self injury, disinterest in peers and a speech delay. Did the school give an educational ASD dx in preschool or did they leave it at S&L Delay or Developmental Delay.

Toward the end of the second year of preschool he was evaluated by the school psychologist and team and we met to modify his iep and discuss the results. Prior to that it was always Developmental delay with speech, but then they also added asd. It wasn't a huge surprise to us, because his quirks and stimming always told us something was going on. The school psychologist did admit to us, though that some of the testing was timed tests and she wasn't sure she had the most complete results since he was having major trouble sitting still and completing a portion of it. On the IQ test, I think he scored in the 50s. I'm at work, so I don't have the paperwork in front of me. I'll look at it when I get home.

Still, everytime we would talk to his doctor or seek out help with a Psychologist at Riley Hospital ( We're in Indianapolis Indiana) we were told that that it most likely due to deficits with speech and there wasn't enough to be able to qualify him with anything else.

I don't hear a lot of great things about Riley vis a vis ASD. I know a few people who travel to Bloomington for their children on spectrum. Given that your child was a NICU/preemie, were you not followed after for developmental checks?

I'm curious, did the Dev Pedi R/O ASD? It's kind of unusual for a school district to identify a child with ASD based on their evals but not meet the criteria for a dev pedi. More often the kid slips through the diagnostic cracks at school (usually because the eval isn't as targeted or robust) and the dev pedi has a more holistic and comprehensive view of the child. There is a lot of overlap of symptoms and behaviors (DS also has ASD and ADHD, along with GAD and SLD), but I'm sort of surprised at a 5 having an ADHD dx but not ASD from a dev pedi. More often a dev pedi would give ASD or an "at risk for ASD" and revisit ADHD in first grade.

ASD was never ruled out completely by the Dev Pedi, rather he would prefer to wait a year, closer to first grade, and then re evaluate him. It's not off the table completely, but when he compared the testing done through the Autism clinic with the school's testing, he thought more might come out in a year, especially if he has some behavior therapy along with medication. I think he went toward ADHD, because of my family history ( My father has severe ADHD) and also while he was trying to talk to ds, Ds kept running over to the door and playing with the door handle obsessively. The whole we were in the office, ds would not sit still. This also matches what his teacher put in her report and what we talked about at home.

He spent last year with a new teacher in the same school, and while he did need some extra help, it was a great year. Behaviorally, he did fine. His first preschool teacher left teaching and started teaching Conscious Disipline, so we had her come to our house for 1 hour a week last year to work him. He loves her, and we felt that he got so much out of it.

I thought Conscious Parenting was a program that included significant parent training more so than working with the child. The way it was described to me, it more about empowering parents with effective strategies by teaching them and breaking them away from dysfunctional parenting rooted in their own experiences.
It is, and it helped us so much in terms of coping strategies, but she also played games with ds, offered choices to him, and actually created with us some social stories to use for dinnertime and using the toilet. She also played a role as advocate at our meeting to discuss his IEP for this year, since she formerly worked at the same school and was also so familiar with him personally and as a student.
Fast forward to now... He turned 5 in June, so he is one of the youngest kids in his class. Currently, he is in a self-contained special ed class, and is receiving private OT once a week.

What kind of class setting is it? Speech and Communication? ASD? ABA? EBD? More of a mix of kids? Why does he get OT? Does he have fine motor issues or is it primarily sensory related services?

It is a contained special ed class, where he get's pulled once a week for 30 minutes of Speech. He will receive ABA, after the FBA, It's 10 kids with 3 adults. He has fine motor issues, as well as sensory. I was pushing for OT through the school, but it wasn't something they were quick to add to his IEP, so I sought out private OT, so he receives that 1x a week for 1 hour. All OT reports are sent to his team at the school. He was having major problems with eating lunch in the cafeteria and being over stimulated, so lately they have been taking him to a private room with an assistant and he eats in a quieter environment. That seems to be helping.

We also attended a conference yesterday to start an FBA to add behavioral help to his day in addition to speech.

An FBA is a great first step. From the data collected, they should be able to understand the antecedents to his behavior and what he's gaining from it. Sent out of the room for the f-word- umm, yeah, he's the tail wagging the dog. A better strategy is to keep him in the room working on whatever he's trying to avoid and remove the classmates if necessary. They're rewarding bad behavior, so they can expect to see more of it.

Agreed! The problem with pulling him out of the room and taking a walk, is that it's almost a reward because he gets to look at all the doors and vents along the way. It's a reward for his stimming. Ugh, I hate receiving calls every week from assistant principal for it.

The last month has been miserable. Since school has started he has been sent out of the room for cursing in class ( the F word) telling everyone he knows, which included dh, me, my mother, and everyone at school that we're stupid.

Ugh. That's got to be tough all around.

Would you describe him as angry or irritable much of the time? Are the outbursts associated with you telling him what to do, transitions, discipline? Or is he calm in tendering the opinion that you're stupid because you did something he truly bellieves is boneheaded or unfair. Big difference.

Sometimes, it's because he's angry, but it seems that other times he's attention seeking. He can be running around the room smiling and laughing and just saying it. Transitions between activities seem to be a big trigger. Calling someone stupid, he just says it to get a reaction. Last night, my mom was about to leave and was talking to me about something and he just walked up to her and said it, which drew a negative reaction.

He screams, tells us no. He receives positive reinforcement, and knows how to use kind words. He is praised for making good choices, but it doesn't always make a difference.

TBH, a lot of kids on spectrum don't really respond to praise because they don't particularly care what others think. Hell, given their glitches with ToM, they don't "get" that others have different thoughts and opinions than they do.

My kid was pretty sweet as at five, but I remember one time asking him to do something for me with the reward being that it would make me happy. This was pre-dx. He looked at me puzzled and asked "why would it matter to me if you're happy?" A five, I was the center of DS's universe- he adored me. He wasn't being a wise-ass, he was genuinely curious.

Yeah he doesn't respond to sticker charts or rewards. He barely cares if he receives praise.

There isn't a time of day that he does better than others. We're at our wits end. I try to stay as calm as possible, but the third he's told me "Fuck you" I have to leave the room, and sometimes, I'll end admit it makes me cry.

That's got to be difficult.

We had him evaluated through the school for ASD, and through a Developmental Pedi for ADHD.

ASD is the primary presenting condition in any person who has these two comorbid. At five, most dev pedis I know would hold off on the ADHD stuff and concentrate on dealing with the ASD.

His doctor thinks that some of his behavioral issues are due to his not sleeping well at night.

NT kids who aren't getting enough sleep can have behavior that looks like ADHD. Poor sleep doesn't cause ADHD. Complicating this, some kids on spectrum often require less sleep than their peers while others need the sleep but have issues getting what they need. Sometimes kids with low iron/anemia can have sleep/behavior issues.

He's been a horrible sleeper since the day he was born. I do wonder about the iron though. His iron checks have always been good, and he does take a multivitamin daily, but it might be something to check into.

We severely limit his tv and ipad time at night and have a set in stone night routine which includes a book. Going to bed isn't the problem, but he wakes up several times at night, so he doesn't usually get a full nights sleep. At his doctor's request, we first tried Guanfacine to help with the ADHD and sleep. It didn't do much, and make him tired and grouchy.

Not at fan of Guanfacine- aka Tenex/Intuniv. DS was miserable on it- so exhausted.

We also noticed that it ramped up his meltdowns so we stopped it. His doctor has now prescribed Focalin XR. I have hopes that it will help. At this point, dh and I are so tired and stressed. I don't know what else to do.

Who is prescring for you? Given the irritability and sleep issues, I'd be very careful of a stimulant. If he has any anxiety (expected if he's on spectrum), the Focalin could make things worse including the poor sleep.

Most of the kids I know with ASD who present with this level of challenging behavior do best on Risperdal- it takes the edge off their moodiness and general nastiness and can help them be more comfortable and settled. It's a serious medication and not to be taken lightly given its profile of side effects, but it can be life changing for many.
Since, it's so shortacting, we'll give it a week, but I'll definitely take your thoughts into consideration. If it creates more of a problem, I'll mention Risperdahl to the dev pedi. Thank you so much for all of your thoughts on this!

Shayna0182 · September 2014

Shayna0182 said:

I'll discuss the weighted blanket with his OT. It doesn't hurt to try. He doesn't usually like blankets touching him while he's going to sleep, but we can always put it on him after he's asleep.

Maybe she has one you can try before you invest in it.

His Devel Pedi has been actively involved with diagnosing his meds, and for diagnosing his ADHD. It took time, because he reviewed his old iep from school along with the most current iep and other school reports.

This is good. Especially for a younger child.

We initially met him when the school determined ds has asd. We went for a second opinion through Easter Seals and had an asd and medical eval done with them. They didn't actually determine asd, because of how social he is, but saw ADHD right away.

I side eye this reasoning. There are certain kids with ASD who are very social- too social in fact. They generally miss social cues and rules that typically developing kids intuit. Things like when another child wants to be left alone or that adults are in charge in the classroom. This was DS's MO as a younger kid. I've had other parents share that initial clinicians told them their kid couldn't be on spectrum because they made eye contact or had a sense of humor.

Did his dev pedi who saw ADHD agree with the school or with Easter Seals? What sort of testing was done to dx ASD at school or rule it out at Easter Seals?

I don't have the exact names of the tests, but I know he was scored on a bracken test, as well as Dh and I and the teacher completed a pretty long questionnaire. The school psychologist wrote an evaluation, along with the examining him both in her office as well as in a group setting with other peers. He did also have an IQ test. It was started in December, and it was completed by Feb. I don't think anyone who has met him doubts that he has ASD. His doctor is the medical doctor through Easter Seals, so I think he tends to agree with the psychologist through there. It just feels like we're torn in two. For dh and my peace of mind, we're just going with the fact that he has ASD, and getting him all of the help he qualifies for through the school.

FWIW, if I had a buck for every parent I've met whose kid with Aspergers was initially dxd with ADHD I could buy a brand new car. No shit.

I can def see change being a huge issue, but at this point I'm terrified he's going to get kicked out of class if he doesn't stop cursing or name calling. Can they do that? I think his teacher is getting pretty frustrated.

They can "kick him out" for up to 10 days. Then, since he has an IEP, they can do a manifest determination to figure out if his behavior is a result of his disability. Since the school is classifying him under ASD, it will be easier to make the case that he doesn't understand social rules than if he were classified under OHI for ADHD which could leave him open to longer suspensions. With behavior this challenging, they could turf him to a more restrictive setting that's set up for kids with emotional and behavioral issues which is rarely appropriate for a speech delayed kid with ASD. These classes tend to be primarily focused on behavior more than academics or speech remediation.

All we want is for him to be happy and enjoy school. I don't want to set him up for disaster, and hate school and the whole environment. Ds attends school in the same district that dh teaches high school in, so I definitely feel like they're doing their best to work with us. Maybe a behavior based setting would be good for him. His issues used to be so clear cut, but I have no idea anymore.

Shayna0182 · September 2014

fredalina said:

I'm not implying this is going to cure anything, but you may want to try adding magnesium to his diet, and add in Epsom salt baths at bedtime. Magnesium helps muscles relax, so adding the baths at bedtime might help him relax some. Also, children (and adults) tend to use up magnesium stores when they are stressed, and magnesium deficiency can mimick ADHD symptoms. Kids who are experiencing ADHD symptoms experience more stress, so for some kids it is a vicious circle. Excess magnesium is excreted, so it can cause loose stool. That's how you know you're giving too much. Start with 50 mg a day for a few days. Add in the baths for a few days. Then try 100 mg a day plus baths. Etc until he starts to have loose stools, then back off to the next lowest dose. Essential oils of lavender and chamomile can help. Lavender is cheap but you shouldn't use too much with boys as there's some estrogen links; chamomile is expensive but worth it. Add a couple drops of chamomile to the running bath water and use lavender a couple of times a week, just a drop or so. You can even put a chamomile tea bag in his pillow (underneath) if he'll tolerate it. It might help with the sleep trouble. Add a drop or two of chamomile to lotion and do a good deep (not super deep of course) massage after the bath if he'll tolerate that also.

Thank you so much! Anything is worth a shot! At the very least it might make him a bit calmer before bedtime. I appreciate these tips!

Unknown · September 2014

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Shayna0182 · September 2014

@McRib‌ How did you request a test for food sensitivities?

Shayna0182 · September 2014

What I mean is, did you have to go through a ped gastro doctor, or was your reg pedi ok with ordering those tests.

Unknown · September 2014

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