So my possible ASD little guy passed the ADOS -- still no clue

[blondeviolin]

This is the same kid who didn't even care about going with the other kids to sit and listen with Santa.  Instead he inspected the back of the piano and insisted I check it out too.  (His developmental pediatrician agreed this was odd, but pointed out that most ASD wouldn't be determined to include Mom too.)

 

He had the ADOS done on Thursday by his developmental pediatrician.  He had had a long day where he woke up early, did speech therapy, quickly ate and then it was off to his appointment with the dev pedi.  He wasn't the most cooperative and he didn't participate well at all during the evaluation.  The dev pedi did say he saw a bit more of my concerns with the way he didn't always participate in a neurotypical way.  BUT, most of the time he does and often he uses non-participation or purposefully withholds eye contact as a way of controlling his environment.  We are going to up his speech therapy to twice a week, but otherwise there's not much else to do since most other learning disorders and such are diagnosed when he's older.

 

He has had some big gains.  He understands if-then most of the time.  He speaks in sentences (though, his mean sentence length is something like two words).  He has big articulation issues ("potty" and "brush teeth" sound very similar...:001_huh:).  But he does involve family (siblings and mom/dad) in what he's doing.  He still doesn't play much with same-age peers, though.  He did say that some HFA kids aren't as obviously on the spectrum until they get more language and then it's more apparent then.  Either way, we don't have to go back to the dev pedi for a year.

 

In a lot of ways I'm happy because what mom wishes her kid to be on the spectrum?  But in other ways, we still have no label.  We are still sort of lost in no-man's land as to why my 3yo's language skills are 6-9 months behind.  And he is not an easy-going little guy.  He's quite stubborn and determined so having some language skills really does help his behavior/understanding. Sometimes my littlest one (13 mos) has better understanding of what's going on than my 3yo.  :(

[MomatHWTK]

Label or not, it is the symptoms that you treat. KWIM? Are you limited in the therapies you can receive without the label? 

[PeterPan]

It's because of the speech therapy.  He spent, what, an hour, having someone work one on one with him and get him all connected?  Drop therapy for three weeks to four weeks, then get a full day eval at an autism clinic.  I'll bet you'd get different results  The ADOS might be the "gold standard" but it's also very subjective. 

 

My ds slipped under the radar for years, and the speech therapy is why.  He was getting similar types of interaction to what my ds now gets with ABA *and* I was doing similar stuff with him daily.  Granted with ABA we also work on compliance, etc.  I'm just saying it was very similar, and that bump in connection that we got with the speech therapy was enough to make people go "are you sure?"  And now that he has started ABA, I'm getting that a LOT.  Someone met him last night and the person (in their 20s) has two siblings with HFA.  So you'd think they would just totally recognize it, and they're like NO WAY about ds.  But no, doubled down, no doubt about his diagnosis.  But his 10 hours a week of ABA bumps his behavior just enough that it becomes a little less glaringly obvious.

 

It will be obvious with time and it is there.  The crummy thing is, without the label you don't have funding.  So schedule a full day eval and drop that speech for a month or two before.  My ds is pretty dramatic the way he pulls into his shell without therapies and comes out with.  It's pretty wow.  You're probably so close to this you don't see it happening.

Edited June 14, 2016 by OhElizabeth

[kbutton]

I am sorry. I had a late diagnosed kiddo who was very difficult on and off at that age. No speech issues. I don't think we would have received a diagnosis much earlier than we did, but you might have more clear symptoms (or more clear something!) in a couple of years.  :grouphug:

 

We did get a PDD-NOS diagnosis under old DSM, so it would've been kind of murky with my son anyway, but once people get to know him, they see it. At 3-4, he was either the best-behaved child in the room or the worst. He could hold it together to some extent, and with kids doing more parallel play at that age, his different style of interaction just wasn't as concerning. 

 

I don't remember specifics from past posts, but if you are having issues with meltdowns and/or compliance, I would work on those things first--it can be very easy to get into a non-productive pattern of working with him in those areas and have to undo it later. You might be able to find some broader tools that at least won't leave you backed into a corner later. It was hard when my son was that age--we had no clear label to say what was and was not appropriate behavior, and his cognitive level was very high, so the general feel was that we should be expecting a lot from him. The label freed us up to kind of meet him halfway behavior-wise. Before the label, we were stuck trying to stand our ground (vs. tiptoe around him) with no tools for that. Maybe you can get some help from the developmental ped in those areas (if they are problem) so that you can at least get some tools on board. 

 

Hang in there!

[Crimson Wife]

When he's a bit older, try seeing someone off the 2E Newslettter list who is familiar with HFA.

[Murmer]

I had a daughter who passed the ADOS (i.e. not on the spectrum)...but one year later got the diagnosis which has been reaffirmed by another phycologist...the ADOS is a good system but for the highest functioning kids it is not always accurate especially with so much observer bias.  

[PeterPan]

And that year lost, when he's little and GLARINGLY needing intervention, is a year of intervention lost.  I would definitely look for a 2nd opinion.  Pause your speech therapy for a month or two and get a full work-up from a clinic that specializes in autism.  

[blondeviolin]

The thing is, I'm not sure he IS ASD.  Some pieces fit, but a fair amount of things don't.  Enough to make me question it too.

 

His developmental pediatrician was the one that did the ADOS.  He's seen him four times in the last six months in office visits and a few times out of the office (ran into him and his family at the park twice!).  His ADOS appointment itself was over two hours.  I feel like he had a good understanding and saw some of the concerning behavior and I do trust his diagnostic abilities.

 

To be honest, the more language that my son gains, the less difficult he is.  I can reason and work with him without just having to haul off and carry him to do what I want.  We've had willfullness type of situations, but nothing that I would view as a meltdown in almost a year.  In fact, we went to the local renaissance festival and we had him walk the whole time, which meant a lot of moving him through crowds, from one thing to the next, etc.  Just six months ago, even the idea of not putting him in the stroller would have made me want to pull my hair out.  But he walked around that whole area for five hours without screaming, crying, or even throwing a temper tantrum.  That's MASSIVE improvement than what we've experienced even a year ago.

 

And we HAVE had a period of stopped speech therapy, just recently in fact.  For about six weeks our therapist went out of town and then we had some insurance mess. We didn't experience any speech or behavior regression in that six weeks.  In fact, he's really never lost skills or words or understanding once he's gained it.

 

I'm pretty sure I'm not having issues of meltdowns.  We have had behavior like that, but I think the last time was August of last year.  I don't think we have non-compliance issues either.  It's more like I ask him to do something and he fights me doing it if he doesn't want to do it, but I can still bribe or walk him through the task.

 

What would non-compliance look like in a kid this age rather than just stubborn/strong-willed kid?

 

His parent-report assessments came back with high levels of activity.  And he's definitely a "busy" kid.  I wouldn't be surprised if he ended up with an ADHD label in his later years.  His older brother has an evaluation coming up in November for ADHD.  In situations where his older brother gets very intense and riled up, my little guy gets rowdy and has trouble processing sounds/words.  This and his inability to echolocate has his SLP wondering about some auditory processing related issues.

 

And, yes, he doesn't play much with same-age peers, but he doesn't have many same-age peer friends.  He engages with kids in his church class, but otherwise he doesn't have friends his age and we don't go out to toddler story time at the library or whatever because that's exhausting and I have older kids...  He does play with his older brother's friend (4).  And sometimes he tries to engage another boy in the neighborhood (2.5), but with him it's very much parallel play still.

[Mom28GreatKids]

We have a very similar situation. DS (4 in Aug) is about 2-2.5 years delayed in his speech, and did finally get an Apraxia dx. But nobody, and I mean nobody who spends time with him- his reg ped, the dev ped, 3 SLPs, and 2 OTs- really suspects ASD. Well they don't, but every once in a while one of them might say . . . Well, maybe. Because he does have some concerning behaviors at times.

 

Sooooooo, we have decided to wait til October (a year since his last asd screening) and take him to the Autism clinic a the big children's hospital. I know some say the more therapy he has the less likely we will get a label (but I don't want a label unless it truly fits-what mother does?), but honestly I don't think it will make a difference. I actually think more speech will help get more language out of him because that is the piece that is missing. Not enough comes out to really know. He has about 20 words and he is just starting to put words together.

 

In the meantime, we are meeting with a Play Project therapist who works with asd kiddos all the time. First meeting tomorrow. Hoping she can help sort things out, make some recommendations about things we are struggling with, and maybe give us her professional opinion. She can't dx him, but my gut tells me she will know.

 

So know you are not alone. These super smart kids that are not typical developing can be little puzzles. We too might fall into the ADHD camp rather than the ASD camp. All labels have their challenges, but I really just want to focus on ds's strengths and help him interact with his world as comfortably as possible, whatever his place is in the world of alphabet soup diagnostic labels. He is a super special kiddo regardless of his limitations and I am sure your little dude is too. Hang in there.

[Crimson Wife]

The thing is, I'm not sure he IS ASD.  Some pieces fit, but a fair amount of things don't.  Enough to make me question it too.

 

I've gone through periods of questioning my DD's diagnosis because of the same thing. It literally took 4 different evaluators all agreeing on the HFA label for me to accept it initially. I kept chalking everything up to the speech & language delay, but that doesn't explain things like why my DD has trouble understanding body language and non-verbal directions. Then when we found out about the hearing loss, I questioned the HFA diagnosis again. However, when I took DD to a parent-child workshop for deaf & hard-of-hearing kids, it was glaringly obvious that she has additional disabilities beyond simply the hearing impairment.

 

Many of the symptoms that she has are things that would have been developmentally appropriate when she was 3 but are no longer age-appropriate at 7.5. A lot of the "theory of mind" struggles fall into this category.

 

For example, a typically developing 7.5 y.o. should be able to understand that her brother has different opinions from her about what costume he should be for Halloween. If you ask my DD, "what does your brother want to be for Halloween?" she will answer what SHE wants him to be even if she can repeat what he has already stated as his preference. The typical 7.5 might say something along the lines of, "Well, he wants to be X but *I* think he should be Y!" clearly understanding the difference in opinions.

[Joyful Journeys]

I was watching a video and they said that after three an autism dx is right over 80% of the time. Before 3 it's fuzzy because symptoms are still emerging. If I had my son evaluated last year at 2.5, I doubt he would have gotten the dx. We go in Aug to the university clinic, and I'm going to be shocked if he is not, despite decent eye contact and pointing. He will be just shy of 3.5, the repetitive behaviors are becoming more and more frequent.

 

Last year it was just the speech delay really and a lag in play skills that I just chalked up to him not liking dolls lol. Now, as he has gained more language, he has actually gotten *worse* behavior wise. Non compliance in him looks like a knock down drag out fall on the floor, bang your head to the floor scenario because someone else opened the door when he was planning to do it, or we are out of pretzels, or I took the baby out of the car seat to feed him and that's not where he is supposed to be. Like kbutton, he can keep it together in new exciting places for the most part, so nobody understands my suspicions. Him bombing his 3 yr ASQ was the first clue to a medical professional, up until then, he was mostly on track.

 

We have the peer issue too since he's not in prek. His speech is about a year behind, both receptive and expressive. He hasn't had speech since February when we moved and I often wonder if it's the complete change of everything he knows compounding the issue.

 

I'm sorry you're in a place of uncertainty, it's so hard! Maybe my son isn't on the spectrum either, but we are going to have to intervene in some way for all of our sakes. Kbutton you saying stand your ground vs tiptoe is my life to a T! I most often choose tiptoe, so I can continue to take care of the rest of the children.

[kbutton]

blondeviolin, you might want to ask around about ASD kiddos without significant meltdowns. I take it as an encouraging sign that those are going away and not coming back so far, but I think we have had a parent or two here whose ASD kiddos don't really have meltdowns. 

 

Joyful Journeys, the door, pretzels, feed the baby stuff was our bread and butter for a few years! Take heart, my son sometimes still gets crazy over that stuff, but now he kind of backtracks and realizes it's over the top, apologizes, etc. And it's nowhere near what it used to be. 

[Mom28GreatKids]

We are making headway in the tantrums over trivial things too, which gives me hope They are less frequent and their duration is shorter when they do occur. Occasionally we will still have a doozy, but I understand where they are coming from better now. We have been working on emotional regulation at OT for 6+ months, and we still have a ways to go. Especially when I see him with NT peers. But, progress is progress.

[Tiramisu]

We got a dx at 13, even though people recognized the intense behavior from very early on. But she was highly verbal so it didn't fit people's expectations. Lately, I keep wondering why none of her doctors ever encouraged an eval. They commented on her behavior and I often ended up crying during appointments because I was so stressed and desperate for help. It took a long time to get an answer, many hard years. At least the OP is taking the right steps.

[Mom28GreatKids]

We got a dx at 13, even though people recognized the intense behavior from very early on. But she was highly verbal so it didn't fit people's expectations. Lately, I keep wondering why none of her doctors ever encouraged an eval. They commented on her behavior and I often ended up crying during appointments because I was so stressed and desperate for help. It took a long time to get an answer, many hard years. At least the OP is taking the right steps.

This sounds so familiar. I am like, here I am, waving my white flag because I don't know what to do with this child, and everyone is like, yeah, well, we don't really know what to tell you. I have been an anxious, teary mess right in front of many of the "experts" yet, all they can say is "you are doing a great job, mom!" I even ask specifically for help for me-- counseling, support groups, etc and they act shocked, like you are fine, you have things together, you are doing so much for him. Um, no. I am not fine. Hoping the Play Project lady has some answers tomorrow. To the OP, I hope you also get some answers.

Edited June 15, 2016 by Mom28GreatKids

[Pawz4me]

Youngest DS is 17 and we're just recently (maybe) getting to an ASD diagnosis. When he was younger he had the speech and sensory issues and other symptoms but none of his therapists suspected autism because they said he interacted too much. We had a screening at a facility associated with a children's hospital and one through our school system. They all said not autism. After he got past the terrible threes DS never had meltdowns. On the contrary--he's very easygoing and quiet. Extremely quiet. As in sometimes I've wondered about selective mutism. He never gets mad and never seems to have strong feelings about much of anything. He's the polar opposite of the hard to deal with child. Only last year when anxiety became an issue did a professional (child psychiatrist) say yes to ASD. She feels pretty confident about it. So IME with him, not having meltdowns after toddlerhood doesn't necessarily mean much.

[PeterPan]

Fwiw, I didn't mean his speech would regress.  My ds seems more *connected* after therapy sessions and *less* connected when he's not getting that intensive, focused kind of interaction (ABA, speech, etc.).  To me, there's a noticeable qualitative difference in how he interacts with people.  It's the aut of the autism.  I'm just saying people who are looking for that would see it.

[kbutton]

This sounds so familiar. I am like, here I am, waving my white flag because I don't know what to do with this child, and everyone is like, yeah, well, we don't really know what to tell you. I have been an anxious, teary mess right in front of many of the "experts" yet, all they can say is "you are doing a great job, mom!" I even ask specifically for help for me-- counseling, support groups, etc and they act shocked, like you are fine, you have things together, you are doing so much for him. Um, no. I am not fine. Hoping the Play Project lady has some answers tomorrow. To the OP, I hope you also get some answers.

 

Go to counseling and get a support group anyway. :-) If you find good options, they are very, very supportive and helpful. I love our SN group at church--it's small, and we know there are many people at church that could take advantage of it and do not, but I am glad we go. It's been a huge help.

[MomatHWTK]

Oh yes, part of our entire system is someone who I can see when I need to do so. It's a  quiet place where you can be you and not "on" for your family. I think DS was 10 or 11 when we started getting answers. Still somewhere between several different letters though I think they would say HF ASD if asked. 

Edited June 16, 2016 by MomatHWTK