update on my possible ASD toddler - I don't even know what to think...

[blondeviolin]

I have been doing a lot of reading and researching.  The big book I've been reading is the An Early Start for Your Child with Autism.  I've been reading online forums and information as well.  I understand that ASD is a spectrum and it presents differently in different kids.  

 

He was reevaluated by the birth-to-three program here a few weeks ago.  The eval came back with marked improvement in his language, yet still behind.  He also scored behind on his social score, largely because I reported that he does not play or initiate play with peers.  He seeks interaction with adults just fine.  But when agemates come near him, he reacts defensively and clings to either his toys or comes to me crying.  The therapists both believed that a lot of his delay is language-related, especially considering that he has only had tubes (and decent hearing) for about three months.

 

Yesterday we met with the developmental pediatrician.  I filled out quite a packet of papers that assessed where he was developmentally.  The provider we saw came highly recommended.  He interacted and met with us for about an hour.  He asked plenty of questions about behavior, interaction, social skills, etc.  He explained how language-delayed children often only interact with adults because adults are more understanding and predictable than other kids.  All of this makes sense.  

 

He acknowledged that there is a delay, but he said he felt comfortable saying that he did not see many markers for autism at this time.  He said he felt pretty comfortable saying that because he does not fit all of the markers for the current DSM.  While we reported he is more interested in things than people and does things that are odd or quirky (still fascinated with light switches, unloads my whole dishwasher with salad tongs, etc), the developmental pediatrician said that because he does not manifest "restricted repetitive patterns of behavior, interests, or activities" he does not meet the criteria.

 

At this point he said it could be just the hearing impacting language and social development, he could have an unseen learning disorder that is difficult to diagnose in toddlers, or he could just be slower to develop.

 

AND YET, we went to a Christmas activity and he basically fell apart because he was already spent.  He was okay if he was ON TOP of me, but if I moved there was crying and wailing and following me saying, "Mom! Mom!"  When all of the kids gathered for the Christmas story, he was fascinated by the back of the piano and was insistent that I inspect it the way he wanted.

 

So, yeah... I feel like we're sort of stuck in the middle... Some things fit (no interest in peers is the big one, ACTIVE, hard to maintain focus sometimes and yet hyperfocuses other times), but a lot doesn't make sense (he makes eye contact, he shares with adults, he answers yes and no questions, he points, he knows his name, he asks for things, he pretends, he plays appropriately with toys, he doesn't make odd hand movements...).

 

So the plan is to do once-a-week speech therapy for the next six months and follow up with the developmental ped in the spring....which I guess is a good plan...but I feel like if it IS something else, I know the sooner we get treatment, the better...

[sbgrace]

I see markers in what you wrote fwiw. Obviously the developmental ped. should be able to discern, though I think he's young (2?) and the hearing probably does make it harder to tease out.

 

As an aside, we went to autism clinic in our state children's hospital when my son was a toddler. He did stimmy stuff in the assessment. But I was told that he didn't have autism because he had good eye contact, pointing to draw attention, and pretend play. He was later dx'd pdd-nos, and then moderate autism in his school years. He's clearly autistic. But he still has great eye contact, joint attention and a fantastic imagination. He also clearly fits the diagnostic criteria and is in fact pretty disabled.

 

So....experts can be wrong. I hope he's right though.

 

It seems reasonable to see how he progresses now that hearing is good and re-evaluate. Things will shake out in time, one way or the other. Hanen materials are good if you want to work as if there is autism, just in case.

[blondeviolin]

I see markers in what you wrote fwiw. Obviously the developmental ped. should be able to discern, though I think he's young (2?) and the hearing probably does make it harder to tease out.

 

As an aside, we went to autism clinic in our state children's hospital when my son was a toddler. He did stimmy stuff in the assessment. But I was told that he didn't have autism because he had good eye contact, pointing to draw attention, and pretend play. He was later dx'd pdd-nos, and then moderate autism in his school years. He's clearly autistic. But he still has great eye contact, joint attention and a fantastic imagination. He also clearly fits the diagnostic criteria and is in fact pretty disabled.

 

So....experts can be wrong. I hope he's right though.

 

It seems reasonable to see how he progresses now that hearing is good and re-evaluate. Things will shake out in time, one way or the other. Hanen materials are good if you want to work as if there is autism, just in case.

Which Hanen program? The Early Start book I'm reading feels a bit too much. We don't have issue with turn-taking or the back-and-forth communication between child and mom...it just feels like he's 20-24 months, not 32 months.

[PeterPan]

Things just evolve and become more obvious.  Your dev. ped's suggestion to do ST for 6 months and come back to discuss further seems reasonable.  More will become obvious during that time.  

 

The repetition can be speech or movements, and it can be *complex*.  Like they'll list the most simple, obvious things (rubbing legs, flicking), but you can get echolalia (which can be VERY complex) or even repetitive odd behaviors they really HAVE to do.  And the higher the IQ, the higher the function, I think the more likely you are to get this stuff.  He sounds very, very bright, no matter what, so it might take some watching for you to notice things.  

 

What would change right now if you had an ASD diagnosis?  What are you dealing with that you need help with?  When we got our ASD diagnosis, it changed nothing really, at first, because it was this vacuous Ok, now what?!?!  It took another 6 months of me working with him and watching with him to find holes and realize things.  Yes, there's more they could do.  I didn't catch his age?  My ds is old enough, he should have had the ABLLS.  He has some holes that it would have caught.  He should have had an FBA (functional behavior analysis) and behavioral interventions, not only for behavior challenges but for LANGUAGE!  So *could* the diagnosing psych have pointed us that way?  Obviously.  Would it have been smart if we had started then?  Sure.  But we had no funding and didn't realize what we needed and why we needed it in order to advocate in the system and get him those things.

 

So I really don't think you need to feel guilty, in that sense, because it's just this imperfect unfolding process.  I also think you could move on to a place that specializes in autism and get a much longer, more complete evaluation of the question.  In our state we have a clinic at a university and they do nothing but autism and developmental stuff.  You go in and get a whole team, with an SLP,OT, psych, play observations, and they run tons of tests and really work with the dc.  There is no need to relegate it to this crappy "Well I asked a question and she didn't say anything that flagged it so I'm gonna just blow her off" thing.  You could do the full eval, spend tons of money, have the team approach, and probably get to a consensus.  But would they say the same thing, to get the hearing, get the ST, and then see where you're at in a few months?  They very well might.  

 

My ds doesn't cry and come to me, never has.  You really *could* be seeing issues that are largely from the hearing.  I agree with you that it's problematic to say one hour, relying totally on your observations (not the observations of a team over many hours) is likely to be accurate on this complex question.  It's not, not unless it was like slap you in the face glaringly obvious.  But it *could* be that the hearing issue is explaining a lot.  And no matter what, the interventions you do now will be good, no matter what the final conclusion is.

 

Is he having sensory issues?  

 

Is he getting in with other kids in a structured environment?  I take my ds to the Y for swim classes, and with that structure his deficits become very obvious.  Other kids would walk up to him and he just wouldn't respond.  I was having to prompt him through conversations.  The lead swim teacher was actually the first non-disability community person to use the A word with us.  I think it was because he was so forlorn in the pool, not looking back at us, not emotionally connected.  She recognized the anxiety and how he was responding to it and just subtle things of behavior as being typical of other kids she had had come through with ASD.  They've been great to us at the Y, and we use it to get interactions with a variety of kids and situations.  I know you're super busy with your horde, but it would be something to consider, getting some structured social interactions.  Things will become obvious then.  Right now he's probably in his comfort zone a lot, at home.  You get my ds out and then things come out, like anxiety over being late, obsessions with roads, being stuck on which bathroom which use, repetitive behaviors like splashing the water on me EVERY TIME, that kind of thing.  And of course you get the social interactions with fresh people, where he gets to work on that over and over, the basics like hi my name is, I have a dog, I like your shirt, blah blah.  

 

I don't see how a one hour eval is supposed to get these things.  You don't even yet know all the ways the DSM criteria can manifest to know if you're seeing them, kwim?  They may be there, absolutely.  But really, let's spin this a more positive way.  He is probably gifted.  Let's just say any 2 yo interested in the workings of the piano is gifted.  He's GOING TO BE quirky right now, because all the brain energy that *should* have been going into language has been going *other* places.  Think about that.  When we eval'd my ds at newly 2 for speech, he had the fine motor skills of a 5 yo!  Literally.  Because that energy had to go SOMEWHERE.  

 

So what *could* be happening, and your ped is right, is that you've got that redirecting and it's making him seem funky quirky.  So now that you have the tubes and are going to work with an SLP, you're also going to make some effort at home each day.  Spend 20 or 30 minutes and be real intentional with him, requiring language, doing things together, just him and you.  At that age the peg tower stacker was awesome, color sorting, etc.  Use language with this!  Who wants more?  Put it UP!  What color?  That kind of thing.  Whatever language he has, you're going to work on it, every day.  And that will be hard for him and use that brain power.  You *might* find that some of the quirky behaviors decrease.  My ds' definitely did.  He still has ASD, but some of the behaviors that were due to that brain redirect really did improve quickly as we got ST.  Your ped is right on that.  

 

And really, think about it.  There can be a certain amount of social withdrawal when you have a disability and aren't hearing well.  I've seen that with hearing loss, and it's not intentional but more just an inadvertent result.  But now you've got that under control.  Maybe you'll do your interactions and bam, see reversals.  

 

Waiting and worrying is very hard, sigh.  If he got that diagnosis today, he'd still be the same little boy.  It sounds like you're on track.  If you have challenges (behavior, sensory, etc.) you should push for evals on that now.  But if there aren't pressing challenges, doing the speech and continuing it at home is the right thing to do.  What you might do though is start looking into full ASD clinics where you can have a longer, more complete eval.  They may have a wait list of 3-6 months or even more.  So you could get on the list now, get the ST now, and just see what happens.  If you get up to that date 6 months from now and everything is completely better, you cancel.  But if you get there and realize wow, we need to sort this out, we're still seeing things, then at least you're in at a place that can do COMPLETE evals and have a thorough, team approach.  Not one hour.

[sbgrace]

Which Hanen program? The Early Start book I'm reading feels a bit too much. We don't have issue with turn-taking or the back-and-forth communication between child and mom...it just feels like he's 20-24 months, not 32 months.

 

If he's turn taking and doing well with back-and-forth communication without any intervention, I think that's a really good sign! Another thing...my son didn't look to me when he was uncertain, scared, etc. We worked really hard on turn taking generally, and he still struggles with true back and forth communication.

 

Their autism specific one for kids without a lot of verbal would be More Than Words. Talkability is their book for kids with more language, which yours might be in time if there is any spectrum involved at all.

They do have two programs for language delayed kids too-It Takes Two to Talk (language delay) and another for late talkers. 

 

Their books are really good, comparable in techniques to the best therapies we've had, and easy to implement. The books do include information on friend making/peer interactions. Well, the autism related books do. It's been a while since I've seen More Than Words. Talkability has a lot on peers. I haven't seen the language delay books. I purchased books only, not DVDS or programs.

 

Given what you wrote, though, maybe he doesn't need it. It may be just hearing related. It may be smart financially to just wait and see. Waiting won't hurt him. I know it's hard though.

Edited December 13, 2015 by sbgrace

[blondeviolin]

 

Things just evolve and become more obvious.  Your dev. ped's suggestion to do ST for 6 months and come back to discuss further seems reasonable.  More will become obvious during that time.  

 

The repetition can be speech or movements, and it can be *complex*.  Like they'll list the most simple, obvious things (rubbing legs, flicking), but you can get echolalia (which can be VERY complex) or even repetitive odd behaviors they really HAVE to do.  And the higher the IQ, the higher the function, I think the more likely you are to get this stuff.  He sounds very, very bright, no matter what, so it might take some watching for you to notice things.  

 

What would change right now if you had an ASD diagnosis?  What are you dealing with that you need help with?  When we got our ASD diagnosis, it changed nothing really, at first, because it was this vacuous Ok, now what?!?!  It took another 6 months of me working with him and watching with him to find holes and realize things.  Yes, there's more they could do.  I didn't catch his age?  My ds is old enough, he should have had the ABLLS.  He has some holes that it would have caught.  He should have had an FBA (functional behavior analysis) and behavioral interventions, not only for behavior challenges but for LANGUAGE!  So *could* the diagnosing psych have pointed us that way?  Obviously.  Would it have been smart if we had started then?  Sure.  But we had no funding and didn't realize what we needed and why we needed it in order to advocate in the system and get him those things.

 

So I really don't think you need to feel guilty, in that sense, because it's just this imperfect unfolding process.  I also think you could move on to a place that specializes in autism and get a much longer, more complete evaluation of the question.  In our state we have a clinic at a university and they do nothing but autism and developmental stuff.  You go in and get a whole team, with an SLP,OT, psych, play observations, and they run tons of tests and really work with the dc.  There is no need to relegate it to this crappy "Well I asked a question and she didn't say anything that flagged it so I'm gonna just blow her off" thing.  You could do the full eval, spend tons of money, have the team approach, and probably get to a consensus.  But would they say the same thing, to get the hearing, get the ST, and then see where you're at in a few months?  They very well might.  

 

My ds doesn't cry and come to me, never has.  You really *could* be seeing issues that are largely from the hearing.  I agree with you that it's problematic to say one hour, relying totally on your observations (not the observations of a team over many hours) is likely to be accurate on this complex question.  It's not, not unless it was like slap you in the face glaringly obvious.  But it *could* be that the hearing issue is explaining a lot.  And no matter what, the interventions you do now will be good, no matter what the final conclusion is.

 

Is he having sensory issues?  

 

Is he getting in with other kids in a structured environment?  I take my ds to the Y for swim classes, and with that structure his deficits become very obvious.  Other kids would walk up to him and he just wouldn't respond.  I was having to prompt him through conversations.  The lead swim teacher was actually the first non-disability community person to use the A word with us.  I think it was because he was so forlorn in the pool, not looking back at us, not emotionally connected.  She recognized the anxiety and how he was responding to it and just subtle things of behavior as being typical of other kids she had had come through with ASD.  They've been great to us at the Y, and we use it to get interactions with a variety of kids and situations.  I know you're super busy with your horde, but it would be something to consider, getting some structured social interactions.  Things will become obvious then.  Right now he's probably in his comfort zone a lot, at home.  You get my ds out and then things come out, like anxiety over being late, obsessions with roads, being stuck on which bathroom which use, repetitive behaviors like splashing the water on me EVERY TIME, that kind of thing.  And of course you get the social interactions with fresh people, where he gets to work on that over and over, the basics like hi my name is, I have a dog, I like your shirt, blah blah.  

 

I don't see how a one hour eval is supposed to get these things.  You don't even yet know all the ways the DSM criteria can manifest to know if you're seeing them, kwim?  They may be there, absolutely.  But really, let's spin this a more positive way.  He is probably gifted.  Let's just say any 2 yo interested in the workings of the piano is gifted.  He's GOING TO BE quirky right now, because all the brain energy that *should* have been going into language has been going *other* places.  Think about that.  When we eval'd my ds at newly 2 for speech, he had the fine motor skills of a 5 yo!  Literally.  Because that energy had to go SOMEWHERE.  

 

So what *could* be happening, and your ped is right, is that you've got that redirecting and it's making him seem funky quirky.  So now that you have the tubes and are going to work with an SLP, you're also going to make some effort at home each day.  Spend 20 or 30 minutes and be real intentional with him, requiring language, doing things together, just him and you.  At that age the peg tower stacker was awesome, color sorting, etc.  Use language with this!  Who wants more?  Put it UP!  What color?  That kind of thing.  Whatever language he has, you're going to work on it, every day.  And that will be hard for him and use that brain power.  You *might* find that some of the quirky behaviors decrease.  My ds' definitely did.  He still has ASD, but some of the behaviors that were due to that brain redirect really did improve quickly as we got ST.  Your ped is right on that.  

 

And really, think about it.  There can be a certain amount of social withdrawal when you have a disability and aren't hearing well.  I've seen that with hearing loss, and it's not intentional but more just an inadvertent result.  But now you've got that under control.  Maybe you'll do your interactions and bam, see reversals.  

 

Waiting and worrying is very hard, sigh.  If he got that diagnosis today, he'd still be the same little boy.  It sounds like you're on track.  If you have challenges (behavior, sensory, etc.) you should push for evals on that now.  But if there aren't pressing challenges, doing the speech and continuing it at home is the right thing to do.  What you might do though is start looking into full ASD clinics where you can have a longer, more complete eval.  They may have a wait list of 3-6 months or even more.  So you could get on the list now, get the ST now, and just see what happens.  If you get up to that date 6 months from now and everything is completely better, you cancel.  But if you get there and realize wow, we need to sort this out, we're still seeing things, then at least you're in at a place that can do COMPLETE evals and have a thorough, team approach.  Not one hour.

I filled out a sensory profile and an OT looked over it.  He scored well within norms for his age and development.  And, in large measure, there isn't any one thing that I see that looks sensory-related.  He does a few things that are odd (he licks things occasionally, twirls my hair, and drinks like a fiend), but those things are all within the realm of normal for a 2.5yo boy.  (Heck, I still twirl my own hair sometimes!)

 

In regards to what would change with an ASD diagnosis, I'm not quite sure?  Behaviorally he is pretty stubborn.  He doesn't let go of something he really wants very easily.  He also is very busy.  It's only within the last couple of months that I can get him to sit still long enough to read a few favorite books.  He often runs the opposite direction when I'm trying to get him to accomplish him to do something so there's a lot of chasing him back down and going through the motions of XYZ.  We are seeing some improvement, though... The other day I told him it was time to get dressed and instead of running the other way, he let me change his diaper, picked up his diaper and stuck it in the trash and brought me a new one!   :hurray: I don't know exactly what COULD change, either, though, kwim?

 

He doesn't really participate too much in structured classes with kids his own age.  He goes to Sunday school for 90 minutes every Sunday with kids ranging in age from 18 mos to 3.  The class is play-based, though, with a short snack time and lesson time.  He doesn't seem to care to interact with the other kids, but the two that he's around regularly are both boys and there is a lot of parallel play going on.  Last Sunday he did fall apart because his teacher tried to wipe his face because he had a bloody nose.  Then two other adults came to help and he flipped a lid.  Once they came and got me, though, I could take him to the bathroom and clean him up just fine.  (And then he came back and chewed out one of the teachers in his jargon because she was holding his baby sister.  That took me by surprise because most of the time he doesn't care if she's around or not...)  I'm not sure I'd feel brave enough to take him to story-time at the library, though.  I can only get him to sit still now!

 

He did score very highly on his fine and gross motor skills (53 months or something like that) so we do see that some of his energy has gone somewhere.  And I wouldn't be surprised to find that he is gifted or academically advanced.  It is a running theme with most of my kids.  (In fact, when I was discussing him with my sister she asked me if he could just be "normal" and that's why his development was different.   :glare: )  

 

I would like to assume that a lot of this is language-based, but things still feel off.  And I have no clue how I can help or what I can do to encourage growth if I don't even know what to label it as...  That's why I'm confused/frustrated.  If there was a diagnosis, I could settle into researching something or learning or whatever...  If I don't know what I'm dealing with how am I supposed to make informed decisions?  It's about the time the birth-to-three people want to start addressing transitioning to the school system and I still don't know?!

 

I am not sure how our insurance works with getting a more involved ASD eval going.  The developmental ped we saw is part of the same military clinic that we work with currently.  I think I'd have to have more approval through him to get a more in-depth evaluation.

 

If he's turn taking and doing well with back-and-forth communication without any intervention, I think that's a really good sign! Another thing...my son didn't look to me when he was uncertain, scared, etc. We worked really hard on turn taking generally, and he still struggles with true back and forth communication.

 

Their autism specific one for kids without a lot of verbal would be More Than Words. Talkability is their book for kids with more language, which yours might be in time if there is any spectrum involved at all.

They do have two programs for language delayed kids too-It Takes Two to Talk (language delay) and another for late talkers. 

 

Their books are really good, comparable in techniques to the best therapies we've had, and easy to implement. The books do include information on friend making/peer interactions. Well, the autism related books do. It's been a while since I've seen More Than Words. Talkability has a lot on peers. I haven't seen the language delay books. I purchased books only, not DVDS or programs.

 

Given what you wrote, though, maybe he doesn't need it. It may be just hearing related. It may be smart financially to just wait and see. Waiting won't hurt him. I know it's hard though.

 

 

The turn-taking is still "behind" in relation to his peers.  But he understands "Can I have a turn?" and participates in games like peekaboo or other ritualistic games where he does something, I respond, he responds in kind, and on and on.  He does NOT get taking turns playing a game (like cards).  We're still in the hoard-everything phase.  He'll only share if he can control the desired item and he knows it's coming back to him.  

 

He also doesn't converse, perse, but he understands the conventions behind me commenting with something, then he comments back, then I comment, etc.  Another few reasons the dev pedi was less concerned about ASD is that he uses language appropriately, doesn't do any echolalia, jargons, and even uses proper intonation.

 

I am going to set up his speech therapy this week so I think I will talk with them about the recommendation of these books and if they would help in his case.  I'm sure it couldn't hurt... 

[Lecka]

Are you part of an active duty family?

 

My husband is active duty.

 

My son has ASD.

 

We have *amazing* insurance coverage. It is *amazing.* It is *really good for my son.*

 

I think the person you saw, for various reasons, is conservative in diagnosing a young child. There are various reasons for this.

 

So, you saw somebody who is doing "wait and see."

 

But early intervention is available to you if you are active duty or if you are retired, and you get an ASD label.

 

For me personally ----- I don't see why you wouldn't pursue a further eval so you can have access to the insurance benefits.

 

It is true, your son has a lot going for it. He totally has a lot going for him!

 

But, he has concerns, too. If you act sooner, honestly, that is just getting help sooner, so that he can start moving forward in the troubling areas.

 

I think you are saying enough ----- for it to be worth trying again, to see if you can get things going. Sometimes the squeaky wheel gets the grease.

[PeterPan]

Honestly, you're saying a LOT of good things.  I don't think there is ASD without sensory issues.  I'm not an expert, I'm just saying I don't think there is.  In fact, sensory used to be part of the DSM criteria, yes?  

 

I agree, I think the unusually good fine motor scores, etc. are probably his brain redirecting.  That WILL shift as he gets ST.  I saw it with my ds.  Before ST, he was DRIVEN to write.  This was all before he was 2!  He was writing recognizable letters, drawing on my couch, etc.  It was HORRIBLE.  We started ST, and BAM it stopped, cold turkey!  Just totally stopped.  Now granted, not only was he getting his ST, but then I was coming home and doing things with him in a focused way every day for 20-30 minutes.  And all throughout the day I was working on our targets.  So you really could see a BIG shift.

 

I don't think parallel play is a problem through ages 3-4.  If you're 7 and doing parallel play (and never more age-appropriate play), that's a problem.  But at 2, I don't see that as a flag.  You're really not giving us a lot of flags here, kwim?  And even if it's stuff you're not seeing yet, honestly there should be some intensity to it, like oh my lands you do NOT understand what I'm going through kind of intensity.  That can be a real flag, even if you haven't noticed all the behaviors yet.

 

That's really good that his prosody and intonation are normal!!  That's a really good sign!!  Like I'm saying, honestly, with no sensory issues, no prosody issues, him seeking you for comfort, these are just fabulous signs.  

 

I think when you get him the interventions for his speech, you may see an improvement in the social withdrawal.  If you couldn't interact, would you keep trying?  He's 2.  Anything that affects hearing, ability to communicate, is just naturally going to result in some social withdrawal.  That DOESN'T mean it's autism.  And we didn't even REALIZE how much social withdrawal my ds had until we started ST.  Very quickly, within just a matter of months, he started interacting with us more.  Now he still gets an ASD diagnosis.  I'm just saying I've seen it with him, with people with hearing loss, with CAPD.  It's just a common thing and it may improve.

 

That motion you're seeing is probably going to get him an ADHD label.  Obviously you'll watch it, and they won't even usually diagnose till more like 6.  That kind of wow lots of motion was what got my ds an ADHD-combined label on top of his ASD, etc.  

 

Have you had his hearing checked?  Not by the ped with a little box but a more thorough audiology eval?  Around here, we can get it done at the university for $35.  A full eval, an hour.  It has become my new favorite thing to recommend, just because it's a good thing to *eliminate* concerns about.  My ds wasn't responding to us at that age.  Like I took him to Awana (when he was 3, a kiddie class), and he just sat there, not responding.  That's really common, I think, with autism, that not responding.  We were having it happen over and over, in lots of places.  Given that he has dyslexia we really felt we needed his hearing checked just to make sure there wasn't a physical explanation there.  And, you know, it's one of those things you could check now and then check again when he's 5 or 6 or 7.  By 7 they can run an APD screening if you're having symptoms of that.  

 

Our ST has always been play based.  I suggested to you the peg stackers.  Anything motivating like that can work: finger paints, glitter glue, cars that race down dual tracks.  It's easy, easy, easy to build language into these things.  I mention it, because if you have plans for Christmas presents like this, maybe hold the things and offer to take them to ST, kwim?  Now they'll have cool stuff.  I just found that *because* my ds has a higher IQ, he was BORED in his sessions.  Not right away, but within about 2-3 months, as soon as she was just totally out of fresh things, he was bored.  Then his behavior deteriorated because he couldn't express what he was feeling.  And, of course, we want compliance in our therapy!  That's when I started taking toys.  Anything new I bought, I saved and took to therapy first.  Whatever you do, SIT IN THE THERAPY!!!!!!!!!!!!!  I know you have a scad of kids, but hire a babysitter!!!!!!! Sorry, not trying to shout there.  Seriously though, hire someone and go alone so that you can sit in the room.  It will be an extremely valuable hour to you.  If he gets distracted by you, then sit outside the door with the door ajar.  

 

If you sit in on the sessions and make notes, you're learning how she works with him, what language he's ready for, what sentence structures, etc.  That way you can carry it over at home!  Not everyone does this, and not every SLP is cool with it.  Ask before you go, if you want to have that option.  

 

The SLP will probably have some suggestions at the end of the session on things she'd like you to do during the week.  Nothing she says is likely to *contradict* anything in the book.  She may or may not have read those books.  Any time you read books like the ones listed in this thread, you're more learning about to increase interaction and communication opportunities.  It's all good.  I just wouldn't stress over it.  There's nothing there that will cure autism and make it go away, and there's nothing there that will ruin anything the SLP is doing.  It's just more ideas on how to weave interaction into your day.  It's AMAZING how little people ACTUALLY talk and require speech.  I think when you start focusing on it, you'll see this.  

 

I'm just saying relax.  :)  Honestly, you've got good things going.  You're doing the right things.  Be AGGRESSIVE on your speech therapy and your efforts at home.  MANY, MANY, MANY of the behavioral challenges in ASD go back to communication.  There is NOTHING more important you can be doing right now that working on communication.  You could get an OT eval, yes.  I had an OT give my ds the blow-off at age 2, and now he needs tons of it.  It might be skewed enough by the brain redirecion that they blow you off, with his weaknesses not becoming evident till later.  

 

There is NOTHING more important that you can do right now than work on communication.  No matter WHAT his ultimate labels, increasing communication is the most important thing you can be doing.  You're doing the right thing, so go at it with gusto!  :) 

[Lecka]

http://www.tricare.mil/autism

 

This is a Tricare page..... honestly, it was very complicated for me to get everything going for my son. Very, very complicated. A lot of phone calls, and a lot of paperwork.

 

But, it was worth it.

 

I wish I had acted a year earlier, though it is fine, too.

 

It is really, really common for people to have your experience and end up getting into the program my son is in. It is really uncommon for people to want to look at a toddler and say "ma'am, your child has autism." This is not what people want to do. It seems mean.

 

But, I think they don't realize that the early intervention available can be so good and worthwhile.

 

At the same time, maybe it is only a language delay.

 

But I think if somebody has an attitude of "wait and see" then they are going to wait and see.

 

You need somebody with an attitude they want to diagnose kids early so they can get early intervention while they are young. If THAT person tells you no, that is a different feeling.

 

Also, keep in mind, some doctors are more popular b/c they are "wait and see" and some people think "wait and see" is better, that ASD is overdiagnosed, that children are being labelled for no reason, etc.

 

But I think that the early intervention is so worthwhile, I think it is worth those pitfalls to look into it more.

 

My son had the same situation with having tubes in his ears right when he turned 2. We all thought his language delay was because of that. He had been in EI for speech and then he exited speech services b/c he was improving after the tubes. Well, a year later he was diagnosed with ASD.

 

That is my personal experience, so you can imagine ----- I am biased to believe this is possible.

 

Of course it is possible it is not ASD.

 

But I think you are listing quite a few things, and that the explanation you were given is overly "wait and see" and if you wait and see and it is ASD later, you have missed out on services that are only available with an ASD diagnosis.

 

This is all ----- really only if you are in the same insurance we are in.

 

For a lot of people ----- it is not this situation, they are going to get the same services with or without a label.

 

But if you have Tricare ----- if you get the ASD label, a lot opens up.

[PeterPan]

Are you part of an active duty family?

 

My husband is active duty.

 

My son has ASD.

 

We have *amazing* insurance coverage. It is *amazing.* It is *really good for my son.*

 

I think the person you saw, for various reasons, is conservative in diagnosing a young child. There are various reasons for this.

 

So, you saw somebody who is doing "wait and see."

 

But early intervention is available to you if you are active duty or if you are retired, and you get an ASD label.

 

For me personally ----- I don't see why you wouldn't pursue a further eval so you can have access to the insurance benefits.

 

It is true, your son has a lot going for it. He totally has a lot going for him!

 

But, he has concerns, too. If you act sooner, honestly, that is just getting help sooner, so that he can start moving forward in the troubling areas.

 

I think you are saying enough ----- for it to be worth trying again, to see if you can get things going. Sometimes the squeaky wheel gets the grease.

I agree with this.  EI, an ASD clinic, I think it's good to want a longer eval than one hour by one person who is not looking at things as a team.  I like to think EI would have caught my ds' ASD if we had let them come.  Instead we just went with our private therapy, which was good (much better than what we could have gotten through EI).  And the reason you would call EI now is because they have a window.  By 3 you're stuck in the school system for evals, and it's a pain in the butt.  Going through EI is convenient.  They come to your home.  They're more on the side of let's do SOMETHING rather than nothing.  So even if it's not all the way to some label, they'll do SOMETHING for things they see.  And you can do BOTH.  It's not like you have to choose private or EI.  That was our mistake.  We all have reasons we do things.  It's scary bringing people into your home.  Thing is, if you want to see my ds' fullest range of behaviors, you come into our home.  Maybe that's why EI is in the home?  Hadn't even thought of it that way till just now.

 

You could call in EI *and* do your private ST *and* schedule at the ASD clinic.  Our ASD clinic has a 6 month waiting list.  They do all day appts.  You could schedule and then cancel if everything is just honkey dory by then.  

[Lecka]

Reading pps..... well, what can I say, I do see red flags.

 

But see, this is why you see someone in person! But I do think, you were given a "wait and see" explanation, that doesn't sound like it took into account everything you were saying.

 

In addition, my son is sensory seeking. When he was 2, this looked like being a 2-year-old. We were told (or thought, can't remember) that he was moving ahead in gross motor skills while his language was delayed, and so he was focusing on gross motor. He was also advanced in gross motor skills while he was 2. He was very intent on doing things. He loved going to the park to play.

 

So ---- I think that is a true thing, I don't think that has to mean ASD at all. But that is not saying to me "it is not ASD." You know? It is saying ---- this child has some strengths, that is awesome!

 

I also really disagree with the idea of not counting the things you mentioned as a "repetitive activity." There are people who would count these things. I don't think you got a good answer there.

 

But go with your gut!!!!!!!!!!

 

I don't want to be a negative person.

 

But I don't think it is negative b/c I think the services my son has gotten have been so good. I feel like "it would be awesome if your son got these services." We have a great service provider, though. She is lovely.

 

And really, the whole point of early diagnosis is early treatment. I think early treatment is good, with minimal pitfalls if it turns out the child didn't really need it. I am not saying no pitfalls, I am saying minimal pitfalls. If you get into it and think "this is not the path I want to go down," then you can stop going down it. But I think you are getting told "no" by somebody who is "wait and see" and who is not going to have a moment of regret about missing out on early services that are so valuable.

 

Honestly, I would go back to the pediatrician, say the person you saw didn't listen to your concerns adequately, and say you want another referral. That is my opinion.

Edited December 13, 2015 by Lecka

[PeterPan]

Like Lecka, our ds improved just enough with ST (more interacting, less social withdrawal), that we were like see, fine!   And his SLP so did NOT want it to be ASD.  She's correct that some people are just on that edge of hating it so much that they want to keep kids from it.  Not realizing that it's NOT helpful when you're missing out on help you could have gotten.  

 

But I still say communication is where it's at.  Everything you do to work on communication and interaction is where you want to be.  More is more better.  One hour a week and going home with no carryover isn't going to do a lot unless those are mild problems.  More is more better with therapy like this.  

 

People who deal with behavioral stuff of autism just get it in their gut and know it when they see it.  Like there was a lady at church who would watch him in nursery, as a 3, 4,5 yo and say that's what her son did.  She could see it.  The stupid checklists weren't turning it up because *I* couldn't see it.  Checklists are worthless in that sense, because they're totally dependent on what you see! If you don't see it (for whatever reason), then you can't mark it.  

 

It's just a process and it will unfold.  Working on the communication is the right thing, no matter what.  But me, I would be wanting a longer, team eval, not just another 1 hour with that dev. ped.  That's for the birds.  The team will play with him, get him in with other kids.  It won't just be you and some checklist.  

[Lecka]

My son also has more skills with me than without me. He can do things with me, that he does not do without me.

 

Okay, not so much anymore.

 

When he was younger, yes.

 

So, I really did not see things that other people saw. And then later, I just quit having him do anything without me.

 

He was a shy child, right? He loved his mommy, right? So of course not ASD (not).

 

But actually for him, this was a sign of two things. One, trouble with generalization that is hard for many kids with ASD. Two, I knew my son and was supporting him in many ways that were invisible and natural to me, but other people did not know him to provide these supports. I was supporting him so he could do good. I found out when he started services, I was naturally doing a ton of recommended practices with him. I became conscious I was doing them as I learned about them.

 

Well, other people did not know to provide those invisible supports for him.

 

The invisible supports are good scaffolding, they are good to do.

 

But b/c I was doing it naturally and not purposefully, I didn't realize that I was providing these supports, and so I didn't realize that some things were "this is how he does things without supports."

 

My son is doing very well now, too. He is in 1st grade.

[PeterPan]

Yes, that's the problem, that you can't convey things completely over the internet.  Like just oh he runs, well 2 yo do that.  But when your *7* yo is doing that and you look back and go oh he did that at 2, then you know it wasn't the same.  And I do think there's this subjective "Oh my lands, you don't know what we're going through" kind of amping that distinguishes it.  If it is just that normal 2 yo behavior, it happens a couple times, people smile, it's funny, he learns, we move on.  When it's like EVERY TIME, that's your repetitive behavior.

 

That's what I was saying about the complexity of repetitive behavior.  My ds had this thing where he would untie our shoes EVERY TIME we went to wipe him.  That's repetitive behavior!  It just doesn't look like flicking or rubbing.  It's more complex.  Now his thing is unbuckling his seatbelt in our driveway (before the vehicle is stopped) and coming forward.  It's a horrible problem!  We live on a hill and it's UNSAFE.  I've tried all sorts of things, and still he does it.  Repetitive behavior.  Just more sophisticated, more complex.

 

I found, and this is just me, that I wasn't saying the things to push his diagnosis over, because I was blaming myself for the behavior.  I thought if I were a better parent, he wouldn't be having those behaviors.  I was embarrassed, kwim?  So I didn't go in and say YOU DON'T UNDERSTAND HOW HORRIBLE THIS IS.  I just went in and glossed all those things, because it was like well parenting is my problem, his behavior is my problem.  So the psych turned around and said it, that his behavior was my problem!  And then I watched and got in with other moms with kids with ASD and learned.  I learned that basically I had to stop blaming myself or thinking that his behavior was because I didn't have the right technique.  What's going on, all the bad stuff, IS, in our case at least, the autism.  But when the kid is 2, you think you ought to be able to control it.  You think it's your fault, so you don't go in with a laundry list of all this stuff.  It was when I aired the whole laundry list that it became obvious. 

 

The other thing you can do is behavior log.  Just A-B-C=Antecedent, behavior, consequence.  It was very hard for me, because we had so much going on, so quickly!  It will probably be hard for you too.  But that can give you a better perspective.  It might be so much is happening so quickly that it's melding together.

 

The other reason behavior logging is good is because then you know what you want and why you need it.  When we got our diagnosis, I didn't know what I needed.  So I had the diagnosis, but I couldn't say give me a behaviorist for xyz, kwim?  NOW I can, because I've behavior logged.  I have 3 weeks of logs showing how frequently things are occurring and in what situations.  The behaviorist can look at that and merge it with her observations and start working on things.  So I'd encourage you to keep a behavior log.  Even if it's just like something you talk into your phone and keep your phone in your pocket and handy, kwim?  I found I couldn't remember everything at the end of the day.  I needed to make notes as we went along.  For us, behavior logging has been helpful, and it would be another good thing, a worthwhile, productive thing you could do while you feel like you're spinning your wheels here.

[PeterPan]

Lecka, this is just a total aside, but my ds has now, for the first time, gone into the gym for his gymnastics class by himself.  It's totally, like you're saying, that I've been supporting him and didn't realize how much until I saw him relative to his peers.  Other kids his age just go in.  Me, I actually walk him to the hall with the cubbies, have him to go the bathroom, and walk him to the bench where he waits.  I don't go till I know his teacher has eyes on him.  Most of the time I'm pretty confident he'll stay now, but I wasn't confident of that when we started.  

 

I don't know how much of that I was doing at 2, kwim?  Like obviously we were, but you *expect* to do so much at 2 that I'm not sure how much is obvious.  But definitely, any time you're seeing your dc in the context of his peers the differences become more obvious.

 

I rag on checklists, but the reason is because literally when *I* do the checklists the ASD doesn't show.  Now his scores on my checklists were high, absolutely.  But for actual ASD behaviors, it was my DH who saw the things and pushed it completely over.  I miss too much.  So me, I'm down on checklists and worn out on them.  We gave ASD checklists to the swim teacher, and in hindsight I'm like WHY???  She saw stuff, but the things she saw in those brief situations were not enough to flag on those forms.  Nursery worker, someone seeing him in longer sections where they had more free time, that would have been better.  But they use these checklists, which are totally dependent on the person filling them out having the chance to see those behaviors, to tell us yes/no on vital, complex, important questions!!!!!!!!!!  What foolishness. 

 

So me, I'm down on checklists.  Team, hours, observation, and observation in a range of situations.  Not a checklist and the blow-off.

[Lecka]

I also don't know how to put this, it is kind-of horrible to say to someone.

 

But, the reason you look at toddler red flags, and it is true, it is not the presentation of an older child with ASD..... it is NOT so that kids can be told "wait and see." It is so kids can go ahead and have early intervention. That is the purpose of things like the M-CHAT and stuff.

 

My son does not, really does not, have regressive autism. But, he did kind-of regress in some ways when he was 3. Just kind-of. It is not that he has regressive autism or had a horrible regression or a horrible loss of skills. That did not happen.

 

But, he had the toddler red flags when he was a toddler. Then over the year he was 3, other signs started to come out.

 

So ---- it would have been really nice if I had already been getting good advice to be on a waiting list, or starting some services, while he was hitting the toddler red flags. It would have been nice if I had already been in a cocoon of understanding then, in a lot of ways, instead of trying to figure things out, only then getting on waiting lists, etc. It was very hard on me. It was needlessly hard I think.

 

So that is my perspective, too.

 

My son is a great kid, too. Please don't think I am saying anything negative about him. He is a great kid and he is also on the autism spectrum, two things that go together for him.

[Lecka]

Oh, grats on the solo gym entrance! That is awesome!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

[maize]

Listening in cause I have a kid in a similar situation.

 

He's going in for an eval with a neuropsychologist tomorrow, keeping my fingers crossed for helpful information to come out of that.

Edited December 13, 2015 by maize

[PeterPan]

Oh, grats on the solo gym entrance! That is awesome!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I know, I was blown away!  Like *he* suggested it.  And then the next time, no dice, hehe.  But he *did* it.  And, you know maybe that's the kind of thing where the behaviorist would have a provider take him and they could work on stuff, I don't know.  I love taking him because it gives me a chance to take of myself for a few minutes (walking on the treadmill, etc.).  So I don't know if I could be doing better there.  I've just been kinda rolling with it.  He acted stressed the next time when I suggested I could drop him off, so I backed off.  

 

And you know what's weird?  (And this is for the op)  When he's around other kids with ASD, I watch behaviors and go ok, that kid has an ASD label, why can he do that and my kid can't??  Or vice versa, my kid has skills theirs doesn't.  Lecka has talked about this.  I think it's why it's fraught with problems to look on the internet and seek comfort (or worry) based on one thing, one symptom.  Because it's such a BIG UMBRELLA diagnosis with lots of kids, lots of variation.  They're doing some genetic testing now and they found when they put 100 kids with ASD in the room and looked at their genes, NO ONE had the same genetic glitches!!!!!!!!!!!!!!!!!!!!!!!!!!!   

 

:svengo: 

 

Maize, which dc is this?  Will your appt be one day or over several days?  That wait is hard!

[PeterPan]

Fwiw, that picture of him behind the piano haunts me.  I'd want that to improve super quickly with the ST.  All the rest, it's like variation, maybe you're noticing things, maybe you're not.  But I'm really hard-pressed to find an explanation for a kid sucked into a piano at 2.  Does he have any obsessions?

[Guest]

deleted for privacy

Edited August 11, 2017 by Guest

[blondeviolin]

Yes, my husband is active duty military so I know that even with a provisional ASD diagnosis, it opens up six months of ABA and other therapies. I feel like he engages with adults and has so much going for him at this point that I'd feel horribly if he lost some of that because I wasn't aggressive with it.

 

I went to his PCM (actually I changed PCMs first because our first one was a dingbat) and they sent us to the developmental ped who is part of this same clinic. Not even sure who we'd get a second opinion from... This clinic/hospital is so rigid about going off base it's maddening. (BUT, I do have a couple of neighbors with kids who have been diagnosed/confirmed ASD by this same developmental pedi so it's not that he doesn't... Those kids ARE older, though.)

 

The big flag I'm seeing here is the inability to engage in play with peers. At home or at the park he comes to Daddy or I to play, but not even to his siblings. It's not until I suggest it that he will take their hand to go play. He will interact with his baby sister if I suggest it, but otherwise it's like she's not around for him. If she touches him, he whines or screams.

 

Sensory-wise, he scored within normal ranges on his profile. The only things I would flag are that he doesn't care for people touching his feet (no This Little Piggy or footed pajamas here) and he doesn't like his face washed. But it's not "OH MY GOODNESS he can't have you do that." (Well, apparently until it was another adult doing it...). And he's starting to get better about the feet thing. But, really, what two-year-old needs to be brought to his mom because you wiped his nose?! (TBH, my 9yo would have because she has/had a touch of social anxiety.)

 

Repetitive motions I can think of are the light switch (at church they are at his level and he just won't leave them be). When he's running around or music playing he may do a little hop-skip. I see most of it when there is music playing because then he will spin or run in a circle, but he also looks at me and smiles as though to say, "see me?" And if he sees me looking at him, he'll come grab me to dance with him.

 

We haven't had any "I have no clue what's wrong with him or why he's screaming" sort of behavior in a few months now. Tantrums or complaining because things don't go his way? Yes. But because I have no clue why it for something that makes no sense, no. But we HAVE had tantrums like that. Full-out, 90 minutes of I-have-no-clue-what-will-help meltdown.

 

It feels like he needs me to be there to feel comfortable or make sense of the world. If a kid approaches he reacts defensively. The problem I'm left figuring out is if it's because he couldn't hear for so long that now he had to play catch up and that's confusing or if it's because there really is some ASD component that's causing him to be unable to make those connections. It's hard to know. Like I said, the big concern is that he doesn't gravitate towards kids. I have seen him engage on his own anecdotally...but it's not the norm. Within the last few weeks I have seen lots of growth and ability for him to engage (and initiate interaction) with unfamiliar adults.

 

I do feel like he's high anxiety...

[Mom28GreatKids]

My 3 yo goes to a dev ped on Thursday. He has some markers for ASD but def not all- Apraxia, sensory stuff, doesn't transition well. It is super hard to determine if this is all due to Apraxia or if there is more to it. I don't know what I want the result to be anymore. I guess we will see. I definitely feel for all going through this process of sorting this stuff out. It is arduous and painful.

[Mom28GreatKids]

We are military too and I am sooooooo thankful for good insurance and all of our treatments are through private facilities, which is awesome.

[PeterPan]

Blonde, can't they qualify him for some OT based on that touch stuff?  That's really intense and causing him problems with living.  

 

Mom28Gr, I don't think you can blame that stuff on apraxia.  Hopefully they won't with you.  This whole developmental ped thing though is very uninspiring.  I had heard them mentioned so much, I just assumed they were great.  Now we have people here saying they go in, get one hour, and get this cursory up/down.  That just seems frustrating to me.  When you get psychs who specialize in autism or go to a clinic, they spend HOURS AND HOURS.  This is not a question you answer with a questionnaire and a chat.  Even ds' diagnosing psych, when he first met him, thought no way.  Even though everything we were saying, logging, showing him was clearly autism, he still had that first impression.  He spent HOURS with him and let things come out.  Then he could go through the DSM and tick it off.  

 

I'm just saying that's really odd to me that someone is saying they can give a definitive answer in an hour to something other specialists would spend a LOT longer on.  That's like the (not a nice word to put here) at the ps who said she could say he did/did not have ASD with a BARBIE DOLL TEST!!!  Now it's true, there's a barbie doll test.  But really, like why does a clinic or ASD specializing psych BOTHER with 4-6-8 (or more!!) hours of observation and evaluations if he could have gotten it done in 5 minutes with a stupid Barbie doll, kwim?  Obviously it's not that simple.  And in our case what she didn't BOTHER to mention was that the 25% of kids who PASS the Barbie doll test tend to have aspergers pattern ASD, which is the pattern our diagnosing psych said ds falls into.  She didn't bother to mention that.  ;)  

 

You're seeing what you're seeing, and I think it's fair to want appropriate help for those things no matter what the diagnostic label is.  So fine, maybe the dev. ped wants to wait on Blonde's kid a while to see what clears up, but that does NOT answer the question of why he screams when he's touched, kwim?  There are things they can do for that (brushing, etc.) so it's not like something she just has to live with.  It's something that responds to therapy if they give the dc a referral.  So even if they don't get to ASD, they still need to be honest and deal with what the parent is seeing.  But I do think being the squeaky wheel, going back and saying fine but I STILL need help with this other thing because this other thing CAN'T WAIT, that's important.  It shows how severe and important it is, kwim? 

[Guest]

Blondeviolin, if you are looking to expand on the ST your son is getting, at home, Mark A. Ittleman's book The Teaching of Talking, is an excellent resource. This is what it was written for, even though in our case it was all I had for ST for my youngest (soon to be 7 year old).

 

A note... I will be deleting my previous comments due to the details about the developmental pediatrician incident with the reports. Otherwise, there are quite a few posts where I have shared our story.

[kbutton]

Yes, my husband is active duty military so I know that even with a provisional ASD diagnosis, it opens up six months of ABA and other therapies. I feel like he engages with adults and has so much going for him at this point that I'd feel horribly if he lost some of that because I wasn't aggressive with it.

 

I went to his PCM (actually I changed PCMs first because our first one was a dingbat) and they sent us to the developmental ped who is part of this same clinic. Not even sure who we'd get a second opinion from... This clinic/hospital is so rigid about going off base it's maddening. (BUT, I do have a couple of neighbors with kids who have been diagnosed/confirmed ASD by this same developmental pedi so it's not that he doesn't... Those kids ARE older, though.)

 

The big flag I'm seeing here is the inability to engage in play with peers. At home or at the park he comes to Daddy or I to play, but not even to his siblings. It's not until I suggest it that he will take their hand to go play. He will interact with his baby sister if I suggest it, but otherwise it's like she's not around for him. If she touches him, he whines or screams.

 

Sensory-wise, he scored within normal ranges on his profile. The only things I would flag are that he doesn't care for people touching his feet (no This Little Piggy or footed pajamas here) and he doesn't like his face washed. But it's not "OH MY GOODNESS he can't have you do that." (Well, apparently until it was another adult doing it...). And he's starting to get better about the feet thing. But, really, what two-year-old needs to be brought to his mom because you wiped his nose?! (TBH, my 9yo would have because she has/had a touch of social anxiety.)

 

Repetitive motions I can think of are the light switch (at church they are at his level and he just won't leave them be). When he's running around or music playing he may do a little hop-skip. I see most of it when there is music playing because then he will spin or run in a circle, but he also looks at me and smiles as though to say, "see me?" And if he sees me looking at him, he'll come grab me to dance with him.

 

We haven't had any "I have no clue what's wrong with him or why he's screaming" sort of behavior in a few months now. Tantrums or complaining because things don't go his way? Yes. But because I have no clue why it for something that makes no sense, no. But we HAVE had tantrums like that. Full-out, 90 minutes of I-have-no-clue-what-will-help meltdown.

 

It feels like he needs me to be there to feel comfortable or make sense of the world. If a kid approaches he reacts defensively. The problem I'm left figuring out is if it's because he couldn't hear for so long that now he had to play catch up and that's confusing or if it's because there really is some ASD component that's causing him to be unable to make those connections. It's hard to know. Like I said, the big concern is that he doesn't gravitate towards kids. I have seen him engage on his own anecdotally...but it's not the norm. Within the last few weeks I have seen lots of growth and ability for him to engage (and initiate interaction) with unfamiliar adults.

 

I do feel like he's high anxiety...

 

I see lots of red flags here and in your other comments. Where am I coming from? 2e kiddo with PDD-NOS (would be ASD sev 1 with new DSM). He scored about a 3 on the MCHAT. It wasn't really remarkable. He was not diagnosed until 9, and at that point, we'd had zero services. I was told he got the PDD-NOS diagnosis because I'd found a way to work with him that he responded to very early on. (It did not feel like it--he was terribly hard to parent as a toddler and preschooler.) Anxiety for him looked like defiance--he was always doing anything possible to not melt down. Misbehavior created conflict, and it was okay (in his mind) to have a big argument that leads to punishment that leads to emotional release, but meltdowns were not acceptable to him. So, he was creating these confrontations, and the meltdowns occurred a little less often as a result. When they did occur, they were big, ugly, and seemingly out of the blue. It was crazy making stuff. We saw an ed psych that works with 2e kids, and she was the first person to mention ASD. We thought she was reaching, but we liked her. We heard a national expert on gifted kids speak at the homeschool convention about 2e kids, and her description of 2e kids with autism was like reading a diary of our home life. We went back to the ed psych, and she dug around a bit more before giving us a Dx. People were stunned. Our pediatrician was surprised (though he had not seen our soon as a toddler). Professionals never brought up stuff with us, so we didn't really consult our doctor. We knew our son was gifted, so we went the route of proving that--in school, it was very clear that boredom was our enemy at school, but because my son didn't have perfect scores on everything, he was seen as bright but just not compliant. He wasn't exactly seen as trouble, just difficult but sweet. We basically wanted proof for the school that he was gifted (so that we could get some traction), and we wanted help for the intensity at home--things were pretty terrible, and we'd had some bad experiences that made us leery of even counseling. Getting an IQ test and some advice was all that we felt we could do at that point to be safe from criticism (I had been accused of lying, bad parenting, all kinds of things by that point). At first, we had to talk people into believing the diagnosis (a few saw it in hindsight), but within the next year, people "got it" for lack of a better term--his behaviors really started coming out of the woodwork. We still have people express surprise, but we work very hard to find the right amounts and types of activities for him to be successful and not overwhelmed. He also is very expressive with his language, so that makes a difference--his affect can be flat, but his voice is expressive, appropriate, etc. He'd be great on radio. He'd probably do a great job in plays. He loves to mimic accents and does a really good job with them. (It's a stim/obsessive behavior for him!) 

 

2e ASD kids can have serial, complex (as OhElizabeth noted), or changing/rotating fixations, obsessions, odd behaviors, etc. They have a large repertoire, or they switch them out every so often, so it looks a bit less obsessive. 

 

http://www.cdc.gov/ncbddd/autism/hcp-dsm.html Sensory is a big tip off, but it's not required in the DSM. It's on the list of symptoms, but it's not like it has to be present if other boxes are checked.

 

I think I would seek additional assessments when you think you can make the case. Watch and document. I think working on communication is an excellent approach. I want to urge you to listen to Lecka about evals, but I know that who you see and what the climate is like in your area determines a lot of whether or not you'll get an accurate label. I think it will become clear over time if your son is on the spectrum or not. 

 

BTW, echolalia is just not cut and dry. My son uses echolalia, but its more for humor, stimming, etc. When he was little, he used it for communication a little bit, but it was usually highly appropriate--more like he found someone else's words more appropriate, so why bother to formulate his own. He frequently misunderstood stuff--he would overgeneralize or undergeneralize things, and that would create troubles at school. He had no idea how to ask for help or clarification if he had a problem. He'd wet his pants if he thought he wasn't allowed to go to the bathroom, for example. He also played with other kids, but was more likely to watch for a long time and need specific invitations or guidance to join (he came across as a friendly introvert, but over time it's been more pronounced in new settings). He used language idiosyncratically, but again, it worked really well for him, so we didn't think much of it. He did pretend play, but it hindsight, it was really more like elaborate mimicry. Even the more free-form versions were always scripted out for fewer surprises and such. Oh, and he rarely played with any toy correctly, but he didn't sit and spin wheels on cars. Instead, he'd figured out cause and effect for every single thing in the house. (If I change this one thing, will this still work this way--very methodical). His toy phone played songs with each button, and he'd "play" his phone like a musical instrument. He would use realistic toys as if they were real (like the vacuum cleaner or camera), but other toys just became improvised tools and such. He didn't use them as designed.

[kbutton]

BTW, my other kid has CAPD and mild apraxia, and he didn't do anything remotely spectrum-ish when he was little. So, I am not sure it can all get heaped on hearing and speech (it's not an absolute comparison with apraxia because he did learn to speak on time, on his own, he just makes half his sounds with the wrong motor movements).

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[PeterPan]

Cricket, you don't know how much your story makes me horrified that people want to bring such a system here.  We've heard some good stories from Canada too, but when it sucks it really sucks, wow.  :(

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[kbutton]

OhE, here I have come to realize that a lot depends on who you are, who you know, and where you live. You need a special referral for any specialist here, even a pediatrician. So for us (here in Canada) the referral to the developmental ped it appears was just step 2 in the process. A way of determining if the child qualifies for further testing. My oldest did not qualify for that step 3. For my youngest, they sent us a stack of forms with no further help. I was so overwhelmed at the time I almost had a nervous breakdown and had to go on antidepressants. Anyway... just to answer your question. I think in some instances the developmental ped appointment is just the step 2 to determine if further testing is needed. But there's so much misinformation and lack of help out there that if you don't have the private insurance to back you you get very little help and guidance from the government funded services.

 

 

This adds a LOT more context to what you have said about your kids, evaluations, and services in the past. :-) I'm sorry it's so hard to get what you need. I feel like we have options here, but in our specific area, if your child is 2e, then unless you see someone who has seen the 2e version of your problem (autism or otherwise), or unless your child's LD, disability, whatever is not glaringly obvious, you will be put off here and dismissed. Which, of course, further prejudices the people who can make those determinations against the family who is wanting services, interventions, etc. 

[PeterPan]

Oh, by the way, thankfully, we can go private for autism. We can have a private evaluation and there are centers that you can use the government funding (when you qualify) or use private insurance. This is what I am now looking into. I would rather use private insurance and have more say in what types of services we choose.

And just to sort of carry this up a bit, I remember you being sort of skeptical of ABA.  You mentioned they recommended it for one of your dc.  Do you know what for?  See, the behaviorist I called in is VERY respectful, not at all objectionable (so far, haha), and she says what she does is ABA.  I just started to think maybe there's something to Lecka's theory that there could be broad variety there, depending on any number of things.  I felt like I could really trust this woman with my child, that she had common sense.  She didn't seem like she was going to come in and warp him or something.

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[kbutton]

Kbutton, it has always been very difficult for me to share private feelings or ask for help, or even know what to ask at times. It is why I have been unable to share certain things at times. These are also Asperger's traits as I very likely am on the spectrum myself. Two kids, both on the spectrum... that did not come out of nowhere, know what I mean? We have 2e going on here as well. It has not been confirmed with testing but like you, I know. My kids have learned how to compensate for many things, but neither one as much as I have as a female. I never had meltdowns. I just internalized everything. In my family, I was treated as an adult since I was a kid younger than my oldest. Showing any kind of weakness is really hard for me.

 

:grouphug:  :grouphug:  :grouphug:

 

I think the backstory of how this has played out diagnostically for you guys puts more context to your comments about therapy and such and how you've found things on your own that have worked. 

 

I know it's been difficult to get into a good communication groove here, and i think this was just one part of your thought bubble that I personally was not seeing/hearing, and I didn't pick up on any clues to ask about it. It's very hard to come into a group like this and figure out how much to share/not share. I'm sorry I didn't pick up on more to ask better questions.

 

I understand how it feels to be perceived or treated as being older or more competent than what I feel inside. It's very difficult. It definitely leads to feeling like you have to hide your deficiencies or having everyone be totally bewildered when there are things that you didn't handle well. After all, you're so mature, right? Not fun. I feel like mature kids tend to get a lot of mixed signals from others and give off mixed signals as well, and that was something that definitely put me in a tight spot often.

 

I think in the past when you shared some of your strategies, you sounded a bit anti-therapy, but now that I know more about services in your area and your story, I am thinking that you were trying to encourage in a different way or warn about potential misunderstandings with practitioners. I hope that I am reading your intentions more accurately now. 

 

I'm glad you've continued to come back here even though I'm sure we've not always understood you well! I hope we're doing better at understanding your POV.

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[PeterPan]

Cricket, what was the book on ABA you read?

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[blondeviolin]

So the whining/crying when his sister touches him is not particularly sensory-related, I don't think.  It's more of a complaint that she has his foot on him and he doesn't like it.  Occasionally I grab his toes and ask him if I can "do piggies?" and he will pull his foot away and say no.  For a while, he couldn't sleep if there was something on his feet, but during the day he would wear footed PJs all day.  (We live in AK so some days he is in footed PJs all day long.)  He has slept with footed PJs recently without much complaint.

 

I have really wracked my brain trying to think about things he does that may indicate rigidity or intensity in his daily routine and really, there is nothing.  I think this is what the developmental pediatrician was getting at.  In the day-to-day realm of life, he throws temper tantrums or cries because his milk is gone or because I've said no, but he gets over it pretty well considering he is two.  He messes with some things that come off as quirky.  (I've mentioned light switches, salad tongs, and just today it's been my Christmas tree lights.)  But it doesn't seem a compulsion that he MUST do them for the day to go well, you know?  If I tell him no or move him away, he may complain but then moves on to other things.  

 

I watched him in his nursery class today at church and, while he wasn't very interested in playing with the other kids in his class, he seems to have formed a relationship with his teacher and sticks close.  When his teacher left the room (other adults were there), this caused him some anxiety and he whined until his teacher came back.

 

His speech is delayed to the point that he's just starting to put two words together.  He repeats what we say when I ask him to, but otherwise isn't big on repeating phrases beyond certain well-used phrases ("Blast off!" Even "3-2-1 blast off!" "Thank you." "Here you go." "Me have.")  But just this past week I have seen him come to his sister and say, "C'mon Abby" or tell me "Ow, head" while rubbing his head.  Besides his speech being delayed, there's no quality about it tone (tone of voice, repetitiveness, or inappropriate use of words) that feels off.

 

As I'm typing this, he's running around with his sister with stuffed dragons saying, "Flap. Flap" and "This way!"  This is a social routine they've done and played before, but he quite enjoys it and will run off and look to make sure his sister is following him with her dragon when he runs off.

 

Tomorrow my plan is to find a speech therapist for him.  I also have a friend on my block who has an older child who was diagnosed ASD by the same developmental ped we saw and she is going to come over and chat with me.  (She's also had her son in the birth-to-3 program and he transitioned to the preK program so we'll talk about that too.)

 

I also sat all of my older kids down and talked with them about not railroading over what he wants or says.  My four-year-old is the worst offender so I'm going to be really on top of advocating for my 2yo to see if he can maybe stop being on the defensive when other kids approach him.

[PeterPan]

OhE, here's the quote. 

 

Uniquely Human, pg. 76-77

 

 

Reading it made me think of some of what you have had to deal with with your son and if there is perhaps a connection to what he says here and what your boy deals with. I know that it makes a lot of sense in my case. I don't get physical but losing trust in people always brings out reactions I sometimes don't realize until after the fact. For me, I usually walk away.  

 

ETA: The bolded in the quote is mine. 

That's interesting.  I think someone else suggested that to me.  It's hard to *feel* that's the reason (that he's letting it all out with the person he's closest to, the person he feels safest with), and yet it's actually rational and possible.  Of course, he'll just ask quickly tell me he hates me (or worse).  He has only once, in all these years, said he loved me.  I teach him whatever behavior I want.  Like I want him to hug me when he comes back from somewhere, to respond to my greeting, so I make a big funny to do of it.  If he walks away, I'll wait and then remind him hey, you forgot to greet me when you came home!  

 

And yes, I've worked so hard to tomato stake him and help him, and that's the thanks I get.  I get choked, scratched, and told he wouldn't mind if I died.  

 

I just keep trying.  But oh yeah, according to the ps, there's no autism here.  What IDIOTS.  Profound, hurtful, overpowered IDIOTS.  It's why we're going back, because it's RIGHT that they update our IEP and get this on and get it fixed and get us access to these services.  And when the new SN coor looked over our files (because the other lady who handled our case got fired), she's like oh, I don't see much new here, just this one new psych eval...  I'm like really??  Like it doesn't matter that he's CHOKING me?!?!  Whatever.  And maybe I need to do Kbutton's thing and submit a page myself for the ETR.  Maybe that's what we need.  Because I'm with him the most.  It has just gotten so ridiculous.

 

Sorry, that's just a rant.  This guy just put up a new video on how he handles stress and meltdowns in the classroom.  (17) Special Books by Special Kids  If you're not on FB, I'm not sure that link will work.  I don't know if his videos are on youtube.  Anyways, his video was a nice theory but didn't really get me there.  A teacher still has this power card and emotional distance and dictatorship they're playing.  It's really not like parenting.  Parenting is more complex, because we're ALWAYS on.  Not all our interactions are this paid professional level of goal-oriented ambivalence.  It's a nice aspiration in parenting, but I don't know, I was just missing shoe leather on it.  He also seems to have this young naivete to him.  He's young, in his 20s, and he's clearly using this to write a book, make money on the side.  So it's his passion and current mission, fine, but it's a business.  And I'm thinking but I'm 39 (like 10+ years his senior), more tired, and have a LOT FARTHER to go.  When this guy finally gets married, has a kid, has some distractions in his life, I'll have a lot more years under my belt and a lot more to go.  We're in this for the long haul, but people become experts because they oh so glibly turn it on for a few hours a day when they're PAID to.  Try turning it on 24/7 when you're NOT paid to.  

[PeterPan]

I bought it actually. It is A Work in Progress. It was written by a team of specialists and edited by Ron Leaf & John McEachin. It is based on the Lovaas approach though, keep in mind. It was written with parents in mind (and professionals also). This is another book that was not designed to be used in place of therapy, but I ended up using it as such and incorporating other approaches to it. I used only the parts that were relevant to my youngest and I am a habitual tweaker so it did not look exactly as in the book for us. 

Wow, that's awesome.  That explains things so clearly *I* can understand it, lol.  And some of it's stuff you know or ascent to but haven't really connected the dots on.  There was a lot in the sample on amazon where it was wow, yes, that would work.  Those steps would work, those things would work.  And there were questions it raised to.  But what a helpful source to get there and see ALL the eventualities.  See, that's the frustrating thing about trial and error methods.  I'm reading a book right now, and it said the same thing, that when you wing it with a trial and error approach, your "solution" for one thing just makes a new kind of problem!  Now that other book's answer was data logging.  I like this McEachin book, because it looks like he's cutting through that, just very practical.

[PeterPan]

Blonde, I think a 2 yo is pretty young to stop doing anything like reacting to people who touch them.  That sounds visceral, innate.  Sometimes OT can help with that.  They have brushing therapies.  You could get your dev. ped to refer for OT.  It would be something to push for, like ok you're SAYING he's not flagging on the forms but I'm having this, this, and this happen, and these are things that are serious and causing problems with living.  They're things not accounted for by the hearing either.  

 

And yes, that thing of how they're processing people around them, touches, etc., it's sensory.  That's why I'm saying they used a form to give you the blow-off instead of using common sense.

 

How is his eating?  Does he eat a broad variety of textures?  Does he fatigue with chewing or have trouble maintaining weight?  Is he low tone? If he's low tone, your ped could give you the referral for OT/PT just for that.  Like you don't even have to get all the way to sensory at that point.  

 

You know, for me things don't gel till I'm angry.  I get angry when I realize I'm RIGHT and the other party was WRONG.  Sometimes we have to get ANGRY about this to make things happen.  I don't know, maybe that's me.  Maybe it's just an initiation hump I have, lol.  These docs so gaslight us, like you're not REALLY seeing this...  You only THINK you're seeing this...  So to me, when you get this list going, after a while you have to get angry and ask why the doc was willing to do NOTHING about the symptoms that CANNOT POSSIBLY be explained by audiology problems.  Sure it might be appropriate to want a few months of speech and to re-eval, but what about the rest??

 

 

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[PeterPan]

Cricket, what you're saying makes a lot of sense, and I think this book is definitely going to help us.  People (psychs, the SLP, people in general) seem to think that just being home with your kids magically fixes things or somehow gives you some success.  Really, I've been needing some explicit help with this!  Sometimes when I read books like this, I realize I've been seeing *others* do those things with success and I didn't realize what I was seeing or why it would work for us or why I needed to imitate it.  And sometimes I'm a really slow learner, lol.  

 

Well anyways, thanks for sharing.  It's a very loaded topic.  I put things out there, because I feel like if I don't say something, I can't get help, kwim?  And sometimes people want to help and maybe we're not yet ready to receive it, like we don't know why we need it or realize we need it.  That's why I said to the op that it's a journey.  I don't think it's as simple as get a diagnosis, realize your kid is "messed up", get interventions to fix the messed up, blah blah.  Not that anyone implied that, but I'm just saying it's really not that for any of us.  It's this learning progression, where our understanding of our kids and ourselves blossoms, grows, and we do better as we understand better.  And a diagnosis is just a step in that journey, not really the start nor the end.

[Lecka]

Blonde -- there is no need for a "repetitive action" to be "compulsive." It doesn't *have* to be that the child is going to resist stopping, etc. It is enough that the child is doing it. As far as -- to qualify for a diagnosis.

 

Like, this summer, we went to the Omaha Zoo. Things went well. At one point my son started walking back and forth along a short stretch of a railroad track. The rest of us were looking at some seals or something. It was time to continue on, and I had a little thought of "oh, dear, he won't want to leave." But, we called him and he easily transitioned on to walk with us. He just looked up and came over.

 

There can be different reasons that kids are doing things like that. Since he came so easily (an easy transition) then that means (to me) he was doing fine, he just thought the train track was cooler than the seals.

 

If he had actually been getting very overwhelmed with the zoo and needed a break -- he might have resisted leaving the train tracks.

 

But just b/c he easily transitioned away from it, doesn't mean it is somehow not a repetitive action. Granted ---- this is really obvious with a 7-year-old and this is a classic type of example of a repetitive action. But when he was diagnosed his repetitive actions were very minor and I felt like they were not picky at all for what the counted. My example when he was diagnosed was that he liked to go across a path in our backyard. I did not have much else for an example.

 

He is a kid where he does have repetitive actions consistent with him having autism. But, he is not a child where that is a problem. But just b/c it is not a problem, does not mean that he is not obviously doing repetitive actions sometimes, that are just things that ARE repetitive.

 

I have some ideas for you, but honestly I have no idea what is a good idea. I have just random ideas. 1) Ask your friend to ask their service provider who diagnoses 2-year-olds in your area (in practice). Just to get an idea. 2) Go in to EFMP. I got some good help from the EFMP office for some things. At the same time, they do not know specifically about autism. For the information I got, it was helpful. 3) I would consider (*consider*) an ICE complaint against the developmental pediatrician. I don't think you got good care. I don't see *why* you would not qualify for the provisional 6 months (that I have not heard of other than from you, but seems like it is what they offer for kids in your son's situation!!!!). I have only filed an ICE complaint once, and that was with a housing office where they were really clearly doing things in a very wrong way, but I would consider it -- but I don't know if I would *do* it at this point, but I would definitely consider it. My experience from the housing office was -- I got answers, things got resolved, in a way that they never got resolved prior to the ICE complaint. 4) I would ask around about doing a temporary transfer from Tricare Prime to Tricare Standard (or whatever it is) for this child. I have never done this, but I know people who feel like -- if you need to have a pediatrician who has this expertise, you need to do Standard and pick someone in your area. I would wonder about doing this, and getting the referrals through this, if you find out there is a pediatrician locally who is known to be good about this (which I would be asking about this through your friend to their service provider ---- if they might know this). I have never done this b/c of cost and also my son has no medical needs where I think he needs it, and I have gotten his referrals fine with him going on base. 5) I would consider just pushing harder and talking back and disagreeing more. Just talking back and saying "no, I think he needs this," or "no, I am not willing to wait." Talk back to them, don't just nod your head and leave. It is worth a shot. 6) There is an "early signs" book about autism. I have not read it and I just know it exists mainly -- I would consider reading it and seeing if it gave ideas. 7) I think the M-CHAT is still free. If you can do the M-CHAT at home and it shows red flags, I would take that in to the pediatrician and ask for another referral. If you go back to the same dev. ped. I would take this and/or info from the "early signs" book and try being a little pushier.

 

I don't know if these things are good ideas, or if they are actually warranted, etc. These are just ideas I have.

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