(Re)introduction (very long, sorry)

HappyHurricane · November 2013

I have a 28 month old DS, who is likely somewhere on the spectrum. He's had quirks since he was very young, but has had so many good things attached to him too, so it is hard to filter out issues at this age. He has had one evaluation when he was 15 months old (I pressed for it a lot, and his Pedi agreed to give us the referrals). That was a year ago, and after a 4 hour evaluation with a team led by a child psychologist, they told us he is not at risk for autism and that he is advanced for his age in all the areas they tested him (I did not fully agree with this). Now, a year later, he has developed a lot, but I see my little guy is different then his peers. Quirky smart little boy, who is not interacting as his peers do. He goes to day care. I have voiced my concerns with his teachers, but they don't seem to agree with me. They say he is still little... I feel deep in my heart my loved DS is different. DH agrees with me on much of the non-NT behaviour that I observe, but at the same time he gets upset with me because I worry ... Of course I will worry, which mother would not? I am at a loss not knowing what to do. I can see how we can go through another evaluation now and get out of there with no diagnosis. His biggest quirks are obvious when he is "hanging out" with peers, and the evaluators would not be able to observe that.

I feel like a terrible mom for not taking any action at the moment, but at the same time I don't know what I should do? I would appreciate any words of wisdom.

Red flags:

Responds to his name 50-70% of the time. Yet, he knows his name and he will tell you who he is if you ask him. He will also tell you my name and DH's name.

Eye contact: great with strangers ( I think he responds to his name consistently to strangers too), but with me is anywhere from poor to inconsistent. It is most often inconsistent and on rare occasions it is great. DH thinks his eye contact is good.

Is not very interested at interacting with other kids. Yet, he knows the names of all the kids at the day care, as well as the stuffs names. "Hi" and "bye" are still prompted for most of the time. When kids talk to him, he most of the time does not acknowledge them. If he wants something from them though, he would go and say "so and so, I want that". He is really really socially awkward.

When we go pick him up from the day care, he does not come to us. He will look at my direction, say "mama", but will continue doing whatever he is doing.

Teachers say he interacts with other kids, but whenever I go there to check on him, he is alone ...

Does not play much with toys (plays with toys at the day care though). At home he often makes different noises (humming a song, singing a song, squeaking noises,...), walks around, seems aimlessly. This is the only possible sensory issue he is showing. I rarely see pretend play, and it is restricted. But, if I start any pretend play, he will go along with me. His favourite toys, if I have to choose are legos (he prefers the real, small legos over duplos), puzzles, sometimes trains, and he loves books.

I have not seen him empathetic, or jealous. Except for the other day at the playground: I was watching over a 20 month old, who DS knows well, and the little boy started crying for his mamma. I picked him up, hugged him and started talking to him. That is when DS came over and asked for a hug. He hugged both me and the little boy. So I am not sure what to think of that.

He sometimes flaps hands, though it is very rare. If not for the other red flags, I would not be concerned about it at all.

Recently his tantrums have become harder to deal with. He is not self harming, but screams the hell out of him. There are days with no tantrums at all, and then there are days when he will have several and they will start over little things. Tantrums last for about 15ish min.

He is very contradictory. I don't know if this is typical for kids on the spectrum. But he will say for example "Mama, I want water!" I would give him water, and he would say "No, I don't want water". As soon as I take the glass away, he will change his mind again "I want water!". And this can go for a long time, until I decide not to give him water, tell him so, and then a tantrum starts ...

Good things:

Quick learner.

Very good rote memory.

He likes cuddling, and is affectionate.

He is always interested how things work.

His receptive language has always been way ahead for his age. He's been able to follow instructions since very little. Though, lately he will often refuse to follow them.

His expressive language: He's been in a speech therapy for over a year, though he never tested as delayed. Just trouble with pronunciation and the fact that his receptive language was far ahead, made him qualified for speech therapy (once or twice a month). At this point he is able to construct long sentences and for most of the time they are grammatically correct. He is often lazy to talk though. I hear functional echolalia (at least I think that's what it is), but not less often he makes his own sentences.

He learns songs and sometimes he changes the lyrics ... makes his own song.

He is not potty trained, but he can mostly dress himself. He is able to put his shoes, pants, socks on with no help, but needs help with putting shirts over his head.

There are times when he wakes at night, but he is generally a good sleeper and he is a good eater. He eats good variety and is not much picky.

Does not have problem with transitions. He even enjoys going new places. We have travelled over different time zones and he gets over the jet lags pretty quickly too.

Good fine and gross motor skills for his age. He would climb, he has good coordination, he rides his trike. He is only scared to go down the slides by himself. He really wants to! But scared. If I hold his hand he would, but is scared to do it alone.

I apologize for the long post, and thank you if you read that far. Any opinion or advise is welcome. Should I ask for another evaluation at this time, or should I wait? His issues are (in my opinion) strictly social interaction related and I don't know how much of that can be recognized as of now and if there are any ways I can help my little guy.

Thank you very much for reading this ridiculously long post.

Assembly_Reqd · November 2013

I guess since no one has commented yet.....

Your pedi did not refer you until you insisted, so I am assuming DS passed the MCHAT. This is not always a R/O for ASD but then again....

He's been evaluated for ASD via a 4 hour appointment.....No ASD

People who spend a big chunk of his social day with him do not have the same concerns. I would think that if a daycare provider had a parent expressing concern and offering to evaluate they would jump all over it if they had concerns. It is not easy bringing up a potential ASD diagnosis with parents.

You state yourself that you don't think he would get a DX. He doesn't need ST, PT, OT. His tantrums sound sort of typical to me.

When you pick him up at daycare he acknowledges you and keeps playing. He is having fun. I think most typical kids have selective hearing.

The "i want, i dont want water" thing is something I read moms on the Parenting Board talking about a few weeks ago. Sounds kinda typical to me.

The hugging on the playground thing I think is partly not wanting to share you, but also wanting to make his little friend feel better. My friend's boy gets a bit possessive like this when she hugs Nate.

Maybe he is just a shy guy or a bit socially awkward? I am not discrediting your Mommy Gut, but you need to ask yourself what supports do you think are *really* out there for the very specific issues you are seeing? Besides more playtime with peers and some directed play with you, I am not sure what that would look like. Your post reads to me that he is able to function and is not affected that much by behaviors that would limit his access to peers and other people in his life.

I think you need to just put these thoughts away for a few more months. Don't let the ASD hype brainwash you into thinking there is something diagnostically wrong with a child who is either shy or socially awkward. If you still have these concerns this time next year, then reassess. He sounds pretty wonderful to me.

annibes · November 2013

I agree with Assembly. What does the SLP think about whether he falls on the spectrum? Does he get private speech or is he in EI? It's a little odd that they'd be working on articulation at age 2, unless he had some really funky phonological processes.

I saw a few buzzwords, but nothing jumped out at me to make me think "why didn't he get a Dx?" Some of those things that he does are typical for a toddler. Flapping occasionally doesn't necessarily point to a disorder. Even echolalia can be a normal part of language learning. What it comes down to is how pervasive and persistent these behaviors are.

All said, when a parent tells me something is off, something is usually off. It doesn't always match the original suspicion, but usually something can be found that provides some explanation. My advice right now would be to continue to get on the floor and play, supplement his speech therapy with activities at home, and ask his other caregivers to let you know if they see anything out of the ordinary.

HappyHurricane · November 2013

Assembly_Reqd said:

I guess since no one has commented yet.....

Your pedi did not refer you until you insisted, so I am assuming DS passed the MCHAT.
He was young then, at the time of the referrals, and his Pedi did not do the MCHAT. Now that he is old for the MCHAT, he falls under risk when we do the MCHAT. Good portion of the questions can be answered either way. This boy is really sitting on a fence. We will discuss this again woth his ped in 2 monts, when we go for the 2.5 year check up. This is not always a R/O for ASD but then again....

He's been evaluated for ASD via a 4 hour appointment.....No ASD

People who spend a big chunk of his social day with him do not have the same concerns. I would think that if a daycare provider had a parent expressing concern and offering to evaluate they would jump all over it if they had concerns. It is not easy bringing up a potential ASD diagnosis with parents.
They don't have trouble with him, he is usually obeying. Providing that, they don't see as a problem that sometimes they have to call his name over and over, for to get his attention. I witnessed this yesterday. went to pick him up, and while was reading the notes in front of the door, I hear his teacher calling his name. He was playing,and she was calling him to check on his diaper. He called several times, he did not answer. Then she commented "he is really ignoring me". I went inside, and told them he does that to me at home very often. But when she went and get his hand to take him away from the activity, he did not scream (at home he does). My point is, they don't see the poor response to his name and the inconsistent eye contact as a problem. He doesn't throw fits there, follows the routines well.

You state yourself that you don't think he would get a DX. He doesn't need ST, PT, OT. His tantrums sound sort of typical to me.

I say I don't think he would get DX now, as I don't think he is severe, and unless somebody spends several days with his deficits are not as obvious. He has some joint attention, but is not always there. For example, he will point at something, "mama look at that", but does often does not check if I am looking. May just repeat what he said. He would check if I look only if he is really interested at what he's pointing at and if he waits for an answer.

When you pick him up at daycare he acknowledges you and keeps playing. He is having fun. I think most typical kids have selective hearing.

The "i want, i dont want water" thing is something I read moms on the Parenting Board talking about a few weeks ago. Sounds kinda typical to me.

The hugging on the playground thing I think is partly not wanting to share you, but also wanting to make his little friend feel better. My friend's boy gets a bit possessive like this when she hugs Nate.
I too think that is typical, but that was the only time he's acted like that. Other times..he can ignore crying in the same room where he is.

Maybe he is just a shy guy or a bit socially awkward? I am not discrediting your Mommy Gut, but you need to ask yourself what supports do you think are *really* out there for the very specific issues you are seeing? Besides more playtime with peers and some directed play with you, I am not sure what that would look like. Your post reads to me that he is able to function and is not affected that much by behaviors that would limit his access to peers and other people in his life.

I think you need to just put these thoughts away for a few more months. Don't let the ASD hype brainwash you into thinking there is something diagnostically wrong with a child who is either shy or socially awkward. If you still have these concerns this time next year, then reassess. He sounds pretty wonderful to me.
Thank you so much for responding. I am keeping an eye on him. I too think I should revisit the issues when he is a little older, it is just hard feeling that something is off, and not taking any action.

HappyHurricane · November 2013

annibes said:

I agree with Assembly. What does the SLP think about whether he falls on the spectrum? She says that she has not seen a case like my son. She is puzzled how he has a good vocabulary, has gotten good grasp on pronouns (for his age), makes long sentences, mostly grammatically correct, and yet, his speech is quite flat. He is emotional, expresses emotions otherwise, but you don't hear emotions in his speech.
That is what we are working on now. Concerning ASD, these are her words: "He is doing well so many things, so it is hard to tell what is going on and what are his quirks due to". Does he get private speech or is he in EI? EI speech only. It's a little odd that they'd be working on articulation at age 2, unless he had some really funky phonological processes. I saw a few buzzwords, but nothing jumped out at me to make me think "why didn't he get a Dx?" Some of those things that he does are typical for a toddler. Flapping occasionally doesn't necessarily point to a disorder. Even echolalia can be a normal part of language learning. What it comes down to is how pervasive and persistent these behaviors are. All said, when a parent tells me something is off, something is usually off. It doesn't always match the original suspicion, but usually something can be found that provides some explanation. My advice right now would be to continue to get on the floor and play, supplement his speech therapy with activities at home, and ask his other caregivers to let you know if they see anything out of the ordinary.

Thank you very much for your input!

Lynn07 · November 2013

Your son sounds like my DS2. He just turned 3 last week. Back at 30 months, he got evaluated by a team of professionals our EI uses to diagnose kiddos. They gave him a "provisional autism" diagnosis. Basically, they're not sure if he's just quirky, or if he's on the Spectrum, but they wanted him to continue to get a good chance at getting services until he's a bit older and can be evaluated again.

My DS is a puzzle as well. The things he excels at (vocabulary and pragmatics, gross and fine motor are all on par, shows empathy, no tantrums - other than normal, annoying 3 year old ones) they said they don't typically see with ASD kids, but the things he struggles with (still parallel playing with most peers, rigidity with certain play themes, big sensory issues with food) are consistent with ASD.

If you're concerned, I'd get him evaluated again in a few months by a developmental pedi or similar. But I agree, I would wait a bit. We're probably going to keep going on the track we are now (he goes to a regular preschool with teachers who are familiar with his needs), and then get him evaluated again closer to 4. GL!

HappyHurricane · November 2013

Lynn07 said:

Your son sounds like my DS2. He just turned 3 last week. Back at 30 months, he got evaluated by a team of professionals our EI uses to diagnose kiddos. They gave him a "provisional autism" diagnosis. Basically, they're not sure if he's just quirky, or if he's on the Spectrum, but they wanted him to continue to get a good chance at getting services until he's a bit older and can be evaluated again. My DS is a puzzle as well. The things he excels at (vocabulary and pragmatics, gross and fine motor are all on par, shows empathy, no tantrums - other than normal, annoying 3 year old ones) they said they don't typically see with ASD kids, but the things he struggles with (still parallel playing with most peers, rigidity with certain play themes, big sensory issues with food) are consistent with ASD. If you're concerned, I'd get him evaluated again in a few months by a developmental pedi or similar. But I agree, I would wait a bit. We're probably going to keep going on the track we are now (he goes to a regular preschool with teachers who are familiar with his needs), and then get him evaluated again closer to 4. GL!

Thank you Lynn! Yes, our kids sound similar, except that DS does not have some obvious sensory issues (I suspect he might have some sensory seeking, given the noises he often makes).

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