Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I’m missing the why here. Why does he have the tantrums?

Does he not want to do what you ask? If so are your directions clear? Are you using visual supports? Are you consistent? Just because you think he fully understands doesn’t mean he does.

Does he have sensory issues?

Ultimately your child is emotionally dysregulated and needs tools to help him calm down. You have to teach these when he’s feeling fine.

When you go to the park for example you have to show him what you need him to do. Ex. We are going to walk in the park, to stay safe first you have to walk with mom then we can have fun. When we run from mom it’s not safe and we will have to go back.

You can have a picture of him next to you to remind him. When he’s unable you have to follow through and go back.

Nothing will be a magical cure, it’ll take a lot of practice and time.

You can also ask his teacher how he walks with the class around school.

And a schedule seems like generic advice but your doctor is right. Idk if they said a visual schedule but you should have one. And a first then board to help remind your child about what’s next. (NOT to incentivize your kid to listen. No first listen then candy, that doesn’t work long term)

Op here. He has tantrums most often because he wants something he cannot have. There are other times when we don’t know or understand why he’s melting down. Just this morning he had a tantrum because he wanted to wear my flip flops and I wouldn’t let him. Then he had a tantrum because he wanted us to go for a drive, but it wasn’t possible to do that this morning.

He does sometimes engage in sensory seeking behaviors, but I’m not sure if that means he has sensory issues? He is totally fine with eating any kind of food, wearing clothes, etc. those things don’t bother him. He does seem to get overstimulated with too much noise/activity, so we avoid situations like that.

I do try to walk him through the steps for different activities but haven’t tried visuals. I’m not sure if that would help. I can give it a try.

Is he your first? I only ask because this sounds like all my kids were at age 3!

Just saw that he is 4 now- the fact that he is getting more intense instead of less intense is more of a concern for sure.

Anonymous wrote:

Anonymous wrote:Jeez that is tough OP. The challenges you describe with the meltdowns seems totally at odds with the dev ped blowing you off. Some parents have a low threshold for meltdowns and bad behavior, and immediately worry their kids have "something" going on. But given the list of all the assessments you've done, I feel like any good expert is going to see there is something more going on here than just typical 3 year old behavior.

Ultimately, I'd "guess" (obv not an expert - but just from our own experience and reading this forum for 8+ years) you eventually end up with one or more diagnoses of ADHD, ASD or anxiety - but some of those may not be easily diagnosable for many years. For instance, lots of kids from this forum don't get the ASD diagnosis when evaluated at age 5, but ultimately at age 8 or 10 get a "HFA" diagnosis. We can debate whether those kids really have "ASD", but it's at least recognizing they probably have always had something going on that makes them neurodiverse.

With that whole list of assessments, obviously your parent-gut is screaming out to you that there's still something going on here that's not being addressed. I'm not a "diagnosis shopper", but I would keep going to a dev ped, psychiatrist or neuropsych until I found someone to listen to me, that these aren't just normal 3 year old tantrums, but a kid that needs support.

I disagree a little bit with this- the fact that she has had multiple evals (developmental ped, neuropsych) that all basically said her kid was normal, to me, probably means that her kid is not neurodivergent and is just a difficult 3 year old having 3 year old tantrums that are in fact within the realm of normal, even if more intense than most other 3 year olds. Not that they were both brushing her off and that she needs to keep shopping around for more specialists. Just my two cents of course.

I hear you. But she has not had a neuropsych and it sounds like the developmenal pediatrician has been the same throughout, though it does sound like at 2 a neuropsychologist said no to autism. But a day long tantrum because the tv had to be turned off at an agreed upon time (op I'm assuming you gave appropriate warnings that this was last episode etc?) is just within no realm of typical. My son's behaviors are WAY less severe and we are taken pretty seriously about concerns for adhd.

Op what do teachers say? I know you said the tantrums don't happen at school which isn't that abnormal for some kids, but if the teachers also see no autism/adhd signs that is interesting.

Anonymous wrote:

Anonymous wrote:I’m missing the why here. Why does he have the tantrums?

Does he not want to do what you ask? If so are your directions clear? Are you using visual supports? Are you consistent? Just because you think he fully understands doesn’t mean he does.

Does he have sensory issues?

Ultimately your child is emotionally dysregulated and needs tools to help him calm down. You have to teach these when he’s feeling fine.

When you go to the park for example you have to show him what you need him to do. Ex. We are going to walk in the park, to stay safe first you have to walk with mom then we can have fun. When we run from mom it’s not safe and we will have to go back.

You can have a picture of him next to you to remind him. When he’s unable you have to follow through and go back.

Nothing will be a magical cure, it’ll take a lot of practice and time.

You can also ask his teacher how he walks with the class around school.

And a schedule seems like generic advice but your doctor is right. Idk if they said a visual schedule but you should have one. And a first then board to help remind your child about what’s next. (NOT to incentivize your kid to listen. No first listen then candy, that doesn’t work long term)

Op here. He has tantrums most often because he wants something he cannot have. There are other times when we don’t know or understand why he’s melting down. Just this morning he had a tantrum because he wanted to wear my flip flops and I wouldn’t let him. Then he had a tantrum because he wanted us to go for a drive, but it wasn’t possible to do that this morning.

He does sometimes engage in sensory seeking behaviors, but I’m not sure if that means he has sensory issues? He is totally fine with eating any kind of food, wearing clothes, etc. those things don’t bother him. He does seem to get overstimulated with too much noise/activity, so we avoid situations like that.

I do try to walk him through the steps for different activities but haven’t tried visuals. I’m not sure if that would help. I can give it a try.

Is he your first? I only ask because this sounds like all my kids were at age 3!

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Jeez that is tough OP. The challenges you describe with the meltdowns seems totally at odds with the dev ped blowing you off. Some parents have a low threshold for meltdowns and bad behavior, and immediately worry their kids have "something" going on. But given the list of all the assessments you've done, I feel like any good expert is going to see there is something more going on here than just typical 3 year old behavior.

Ultimately, I'd "guess" (obv not an expert - but just from our own experience and reading this forum for 8+ years) you eventually end up with one or more diagnoses of ADHD, ASD or anxiety - but some of those may not be easily diagnosable for many years. For instance, lots of kids from this forum don't get the ASD diagnosis when evaluated at age 5, but ultimately at age 8 or 10 get a "HFA" diagnosis. We can debate whether those kids really have "ASD", but it's at least recognizing they probably have always had something going on that makes them neurodiverse.

With that whole list of assessments, obviously your parent-gut is screaming out to you that there's still something going on here that's not being addressed. I'm not a "diagnosis shopper", but I would keep going to a dev ped, psychiatrist or neuropsych until I found someone to listen to me, that these aren't just normal 3 year old tantrums, but a kid that needs support.

Op here. I’m sure he has at least ADHD, though I know he’s too young for an official diagnosis. He might also have ASD, but so far that’s less clear.

I know our team of docs will write us referrals to whatever therapy we want-should I just ask for that?

We’ve also had genetic testing done and DS has a rare genetic disorder linked to severe epilepsy and ID (though his presentation has been unusual and he’s much less impacted than other kids with this diagnosis).

Despite all of this, I just can’t seem to figure out how to just get answers about how to parent my kid. We did OT when he was younger but it was not very helpful and more focused on fine motor.

Do I look for an OT that specializes in kids with ADHD?

Did they administer ADOS at 27 mo old? I have a child with a very similar presentation (but only 1-2 step instructions) and we got ASD diagnosis. Perhaps ABA could be one of the options? If you have ASD on paper insurance pays for it, and at 3.5 he is still young enough for ESDM, which is a more naturalistic modality.

Op here. I think what he had at 27 months was the ADOS, but I’d need to dig up the records to be sure. I know it was an autism specific eval since he’d already had several comprehensive developmental evals.

We tried to get the ASD diagnosis so it would pay for ABA and make things just easier for therapy and insurance but we haven’t been able to get it do you know what they want to see? I know when DS went for the autism eval, I guess there was a kid melting down in the waiting room and DS went and patted her back and said it’s ok, and kept looking at DH and the kid back and forth and saying “so sad, so sad” and the psychologist was just like, ummmm yeah he doesn’t have autism. At the time this is of course what I wanted to hear but maybe it was a red flag? Maybe we should get another eval for autism.

I mean, ultimately I’m not sure we need another diagnosis-I’m more trying to figure out strategies for dealing with the behaviors.

If youve been actively trying to get your child diagnosed with autism and haven't been able to, then all signs point to your child not being autistic. Truly.

Anonymous wrote:Jeez that is tough OP. The challenges you describe with the meltdowns seems totally at odds with the dev ped blowing you off. Some parents have a low threshold for meltdowns and bad behavior, and immediately worry their kids have "something" going on. But given the list of all the assessments you've done, I feel like any good expert is going to see there is something more going on here than just typical 3 year old behavior.

Ultimately, I'd "guess" (obv not an expert - but just from our own experience and reading this forum for 8+ years) you eventually end up with one or more diagnoses of ADHD, ASD or anxiety - but some of those may not be easily diagnosable for many years. For instance, lots of kids from this forum don't get the ASD diagnosis when evaluated at age 5, but ultimately at age 8 or 10 get a "HFA" diagnosis. We can debate whether those kids really have "ASD", but it's at least recognizing they probably have always had something going on that makes them neurodiverse.

With that whole list of assessments, obviously your parent-gut is screaming out to you that there's still something going on here that's not being addressed. I'm not a "diagnosis shopper", but I would keep going to a dev ped, psychiatrist or neuropsych until I found someone to listen to me, that these aren't just normal 3 year old tantrums, but a kid that needs support.

I disagree a little bit with this- the fact that she has had multiple evals (developmental ped, neuropsych) that all basically said her kid was normal, to me, probably means that her kid is not neurodivergent and is just a difficult 3 year old having 3 year old tantrums that are in fact within the realm of normal, even if more intense than most other 3 year olds. Not that they were both brushing her off and that she needs to keep shopping around for more specialists. Just my two cents of course.

With the information about seizures, I would seriously consider having him re-tested for ASD. My son was just diagnosed and exhibited all of the symptoms you describe minus the seizures. In the packet I received from KKI (I'm an earlier poster) it specifically lists seizures as one of four medical issues that may accompany autism.

I also agree with 1337 who said look at other providers as the ones you have don't seem to be adequately addressing you or your child's needs.

sorry, 13:37 here and re-reading some things and I will share that i think if I were you, I would first look into the keto diet option as difficult as that is. I guess I have been thinking of it this way with my son from age 3.5-4.5 who has some struggles and may have adhd/social anxiety: at this age, try to rule out what we can - could anything else be causing this? Are there other changes that could make a difference? (both at home and school. For example, we have my son going a shorter day/week in preschool right now. It's tough for us but it seems to be making a difference for him, less stimulation. We've removed screens for him, removed our phones when we're with him to make sure time is quality/focused, working on all the skills with his therapist to help him identify when he's in the red zone for example and get himself back calm and we're trying the neurofeedback).That way, as he gets closer to 5 if the answer is that maybe these things make a small difference but not enough, we can confidently try to find the right medication to help him. Once you're on the med train, it's a little harder to do this kind of rule out work I feel like because you don't want to start over and they are in real school where removing meds could be an issue. So, I wonder if now is the time to really try to figure out what's going on here. Is it the seizure meds? If there is any chance you can rule that out through a keto diet, I would do that now.

If you rule that out then ok there is something going on that a seizure medication adjustment can't fix, then you have more information. That all being said, your son's behaviors sound INCREDIBLY difficult and draining for both you and him, if you felt like pursuing medication right away I would completely understand but I heard and understand why you are hesitant given he is already on the seizure meds.

Anonymous wrote:

Anonymous wrote:You're in CA, right? Is there any place in your area like Kennedy Kreiger-Center for Autism and Related Disorders? While 4 may be too young for a neuropsych, subject matter experts can do play-based testing and a parent interview.

https://www.kennedykrieger.org/patient-care/centers-and-programs/center-for-autism-and-related-disorders


As far as the ADHD diagnosis, our psychologist said she had diagnosed as young as three based on the intensity and duration of the emotions.


I empathize so much OP because I remember being there. Ours is seven now and things are exponentially better than they were at 3 and 4. Doesn't help you now but please know there are others here who understand what you're going through. Does CA have any early intervention services you could utilize? I feel like you should research now and look into it because from experience, K was a traumatic s*** show that I wouldn't want any child or parent to go through the experience we did.

Op here. We did early intervention but it stopped at age 3, but then DS started pre-k in a public school with an IEP. He receives speech therapy at school and we pay for it privately at home too.

I will see what other resources I can find. What does getting the ADHD diagnosis do? Does it open up more avenues for therapy? Or medication? I’m so nervous to medicate since he’s already on daily medication for seizures.

13:37 here. I'm not sure an adhd diagnosis opens THAT much outside meds, not in the same way autism diagnosis might if that is really the issue. If it IS adhd and not autism, it might help you to frame the issue and learn specific behavioral approaches from therapists but like others have said they aren't that different at this age than what you do for typical kids so it's not that life changing honestly. The biggest thing that helps with adhd is meds, unfortunately. The other option is what I mentioned above, neurofeedback but I have no idea if it's a good fit for your son.

OP I'm so sorry. This sounds so so hard and I just want to say from some of your old posts, this does not sound like a parenting issue. It sounds like something is definitely going on, which you know, but the professionals you have aren't listening. At almost 4 they could definitely be considering ADHD at a minimum. My son has had adhd listed as a rule out since 3.5, we've been keeping an eye on it and at 4.5 it's looking more likely but the behaviors are not to where you're describing (and we don't have the type of perseveration you mention which I agree sounds more like ASD but of course cannot speak to much just from descriptions on the internet). We'll be seeing a psychiatrist to consider medication and get perspective on potential adhd diagnosis later this month.

Do you have a general therapist for your son? That has really helped us because they help us figure out what our options are. We see a psychologist but an LCSW could also do this. My son started neurofeedback recently on the recommendation of the therapist for example. Maybe it will do nothing but it's worth a shot and so far, it seems promising. We felt it was worth a try to avoid medication a little longer since he's so young. We also did completely remove screens for the last couple months and that has been well worth it. We read books or play board games instead. It's really increased our 1:1 time even though we weren't screen heavy to begin with (a couple hours on weekends).

I guess what I'm saying is, I would be so discouraged as well and I would see new professionals that will take you more seriously. Tantrums lasting that long are well, well outside the norm. ANd I say that just to validate you, because it sounds like you know that and then aren't getting responses from others which makes you feel like it's bad parenting. But I just do not see how that could be the case.

Anonymous wrote:You're in CA, right? Is there any place in your area like Kennedy Kreiger-Center for Autism and Related Disorders? While 4 may be too young for a neuropsych, subject matter experts can do play-based testing and a parent interview.

https://www.kennedykrieger.org/patient-care/centers-and-programs/center-for-autism-and-related-disorders


As far as the ADHD diagnosis, our psychologist said she had diagnosed as young as three based on the intensity and duration of the emotions.


I empathize so much OP because I remember being there. Ours is seven now and things are exponentially better than they were at 3 and 4. Doesn't help you now but please know there are others here who understand what you're going through. Does CA have any early intervention services you could utilize? I feel like you should research now and look into it because from experience, K was a traumatic s*** show that I wouldn't want any child or parent to go through the experience we did.

Op here. We did early intervention but it stopped at age 3, but then DS started pre-k in a public school with an IEP. He receives speech therapy at school and we pay for it privately at home too.

I will see what other resources I can find. What does getting the ADHD diagnosis do? Does it open up more avenues for therapy? Or medication? I’m so nervous to medicate since he’s already on daily medication for seizures.

You're in CA, right? Is there any place in your area like Kennedy Kreiger-Center for Autism and Related Disorders? While 4 may be too young for a neuropsych, subject matter experts can do play-based testing and a parent interview.

https://www.kennedykrieger.org/patient-care/centers-and-programs/center-for-autism-and-related-disorders


As far as the ADHD diagnosis, our psychologist said she had diagnosed as young as three based on the intensity and duration of the emotions.


I empathize so much OP because I remember being there. Ours is seven now and things are exponentially better than they were at 3 and 4. Doesn't help you now but please know there are others here who understand what you're going through. Does CA have any early intervention services you could utilize? I feel like you should research now and look into it because from experience, K was a traumatic s*** show that I wouldn't want any child or parent to go through the experience we did.

Anonymous wrote:

Anonymous wrote:Are you still on a waitlist for an ADHD evaluation? And if possible I recommend getting re-tested for autism. In high functioning cases, how they present at 1.2 or 2 years old may not hit all the criteria in the DSM but as they age age it may become more pronounced and obvious.

+1 the hyper-fixation on preferred activities reminds me of my little guy with ASD, epilepsy. Now it’s clear that he’s not even just “super mild asd,” but when he was 28 months, I had professionals (county evaluators, ped, speech therapists), tell me they didn’t think he was on the spectrum. Finally diagnosed at 4.
ABA has been very effective.

Op here. We are working with a developmental ped and a neurologist and both said it was too early for a full neuropsych and that he was too young to be diagnosed with ADHD (I’m sure he has it though). We see the developmental ped again in a few months and I can raise it again. I know ABA would help.

He for sure hyper fixates on preferred activities and will not let it go. It’s so hard. He will cry for so long.

Anonymous wrote:Are you still on a waitlist for an ADHD evaluation? And if possible I recommend getting re-tested for autism. In high functioning cases, how they present at 1.2 or 2 years old may not hit all the criteria in the DSM but as they age age it may become more pronounced and obvious.

+1 the hyper-fixation on preferred activities reminds me of my little guy with ASD, epilepsy. Now it’s clear that he’s not even just “super mild asd,” but when he was 28 months, I had professionals (county evaluators, ped, speech therapists), tell me they didn’t think he was on the spectrum. Finally diagnosed at 4.
ABA has been very effective.

Are you still on a waitlist for an ADHD evaluation? And if possible I recommend getting re-tested for autism. In high functioning cases, how they present at 1.2 or 2 years old may not hit all the criteria in the DSM but as they age age it may become more pronounced and obvious.

You need a BCBA.