What do you think is the deal with my son?

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My son (let's call him Daniel) is 21 months old, and it's become increasingly apparent that he's not entirely like most other kids his age. A few medical professionals have suggested he has some red flags for autism-spectrum stuff, but I'm not kidding when I say "suggested" -- nobody seems to want to come out and say it, not at this age. I've done a lot of independent research (well, googling) and what I find is really perplexing. There are definitely some things he does that are suspicious. Other things seem to position him far from the spectrum. I was hoping to get some opinions. What do you think?

We've been aware of his gross motor delays for quite a while now. At 21 months, he can cruise, but he cannot stand unsupported -- not even for a second -- and of course, he can't walk. He'll walk when you hold two of his hands, but if you hold one hand, he'll sit down or fall. I'm pretty sure that's a confidence issue. He's been diagnosed with low muscle tone, though interestingly, the pediatrician and neurologist initially said he DIDN'T have low tone. When the physical therapist told us he did and we relayed that information back to them, they changed their minds.

Particularly strangely, his speech is great. My understanding is global hypotonia nearly always goes hand in hand with slurred speech. Not only is Daniel's speech not slurred, but his enunciation is excellent for a kid his age. In fact, a pediatric speech pathologist (we met her socially) told us that in her entire career, she's never seen a kid his age who speaks so clearly.

He doesn't follow instructions well. When you tell most kids this age to give you the shoe, they'll give you the shoe. He will not, and in fact, if you persist, sometimes he'll start crying because he just doesn't seem to understand. I think he's hearing "blah blah blah shoe." He'll repeat "shoe," but that's it. He can follow SOME very simple instructions, but I don't know if those even qualify as instructions. He'll point to the duck when you say "Where's the duck?" He'll also generally come when you say "come here." He won't really answer yes or no to your questions, either verbally or by shaking his head.

He repeats almost everything you say -- the last word or two of it. His vocabulary is amazing and has been for many months. He knew 100 words when most kids were barely getting past "mama" and "dada." He knows the entire alphabet -- he can identify each letter individually and he can also "sing" you the alphabet song with limited prompting. He can count to 20 or 30, depending on your definition of counting. He knows shapes and colors. He memorizes his books and repeats key words back to you. All this, the neurologist tells us, is red-flag behavior.

He is obsessed with the alphabet. He'll sit there and name letters for a good while. When he gets to a letter he particularly likes, his arms will shake a little, then he'll throw them out and scream the name of the letter.

He's never really gestured. He points to things, but only if he's close enough to touch them, generally. He did some limited waving when prompted at one time, but geez, he hasn't done that for months. If you tell him to say "bye bye," he'll say it after the person leaves. He doesn't feed stuffed animals. He doesn't use a fork or spoon -- a spoon he has no idea to do with, a fork he'd rather play with and occasionally spear a piece of food, which he'll then pull off the fork and stick in his mouth. Not sure he imitates behavior -- maybe he does, but not that much. He'll grab the comb and comb your hair if you're combing his hair. He doesn't kiss or hug -- doesn't seem to know how, honestly. He doesn't mind being kissed or hugged, though. If you tell him to kiss his teddy bear, he'll hold it out for YOU to give it a kiss.

He will not let me brush his teeth. Period. I have to pin his arms down while he whines and cries. This has been going on every night for nine months. He seems to have textural issues with food and is sometimes a very lousy eater, though this changes from day to day.

He doesn't call for anyone when he wakes up in the morning. You could probably let him sit in his crib for six hours, and he would, then he'd take a nap.

Now, what else? I've always thought he made great eye contact -- though the physical therapist, when prompted, said she thought it was inconsistent, but then, she's making him do things he hates to do. He's been described as "friendly" by an evaluator -- and by pretty much everybody else who meets him. This past weekend, he had a great time playing with various members of my extended family -- rolling balls back and forth, looking at books, that sort of thing. When I'm reading him books, occasionally he'll look back at me and lovingly say, "Daddy!" He does not like playing alone -- eventually he'll start calling for, and then seeking out, mommy if you leave him alone for too long. A lot of the alphabet and counting stuff, he wants it to be interactive. The repeating of lines from books, too. He wants YOU to say the next number, and only then will he continue counting. He'll do it independently, too, but often he clearly wants you to participate, to the extent that he'll get upset if you don't.

He clearly craves attention. If you ignore him for too long, he'll start raising his voice, that sort of thing. You are not allowed to sit there and talk with him in the immediate vicinity unless you frequently address him.

He has an excellent sense of humor. He's a happy kid and smiles a lot. He likes engaging people in wordplay and rhyming. He gets a sly, conspiratorial grin on his face before he does. He's been playing peekaboo since he was 6 months old or some ridiculously young age like that. He covers his head and says, "Daniel!" (i.e. "Where's Daniel?") then uncovers it and says "Is!" ("There he is!")

Sorry this post was all over the place -- it's hard to know where to start here! Anyway, I'd really appreciate some good insight if anyone has any. What does this sound like to you?

Rarely will people make a diagnosis for children this young - neither the experts, or the people on this forum. It's for the same reason, basically -- in that at 21 months, there's so much at play here, it's hard to be sure what's going on. Having said that, though, there are things that you could be doing, as if your son "might" be on the spectrum, that will be helpful in case he is. If he's not on the spectrum, then you really haven't wasted any time -- you've just spent even more time with your child, which is never a bad thing.

The things that ring true with your son about a possible place on the autism spectrum are 1) being able to speak especially well for such a young child, but also repeating words back to you. That repeating words back to you -- echolalia -- is common with some kids on the spectrum. Now, having said this -- I have had one son, undiagnosed, who was probably high on the spectrum, who had a GREAT vocabulary at a young age. He was also my first child, so we read to him a lot. He did not, however, have much problem with echolalia. Our other son, who was a bit lower down on the spectrum, did have some echolalia, and his vocabulary was limited up until about age four. This is why you can't really diagnose -- because it's so different, even with two kids on the spectrum. Another thing that you mentioned about your son is 2) his lack of pointing to things. Again, my experience was that my older son did point to things, but my younger son did not. I'm not sure that this is a real conclusive thing, but it's something to keep an eye on. Also, your son 3) repeats lines from books, and kind of gets upset if you don't play that game with him the way that he wants. Again, not a real conclusive thing, but something to watch. Another thing, 4) he could stay in his crib for hours. That's very similar to my youngest son.

On the flip side, and this is partially why the experts won't give you a definite diagnosis right now, is that your son seems to like attention and interaction with you and other people. That's a definite positive. Also, this sense of humor that you mention is really a good thing.

If you're concerned, there are some things you can do. Try and make sure that you provide as much interaction with other kids as possible, so that you can observe how he plays with others. If you notice problems with his play style, then YOU start playing with him and show appropriate behavior. Do as much interacting as possible. When he plays well with others, gush over him, make the experience as joyful and fun for him as possible. Also, if he ever seems to be getting stuck in a routine (our youngest would notice the route we would drive to Grandma's house, and would get upset if we changed the route), CHANGE THE ROUTINE. Change it all the time. Get your child used to changes, so that there is no routine. When you read a book to him, and he likes the book read in a certain way, change the way you read it.

That's all I can think of right now. Your son very likely is not on the spectrum, and if he has any diagnosis at all, it may end up being PDD-NOS, which is an umbrella term for "has some characteristics of autism, but not all". But remember, I am not an expert. I just have experience with two boys on the spectrum, and they are very similar in where they fall on that spectrum -- so I'm not all that experiences.

I personally believe it's impossible to diagnose a 2 year old with any psychological condition.

Is he getting services through Early Intervention? That's the first order of business. He doesn't need a diagnosis, just needs to show a delay (which, not walking is a delay) and he'll probably get OT and PT.

The youngest I've heard of diagnosing is actually 11 months (just a few times), quite a few by 22 months, and almost certainly by 24. In a case like your son who isn't clear-cut, they might wait longer.

There is no one trait that puts a child definitively not on the spectrum. An ASD child can have great eye contact, great sense of humor, great superficial speech even.

Some things to consider and think about:

Does he show empathy? If you get hurt and "cry" (as in, pretend to), what does he do?
Does he have any sensory issues?
How is his social language, conversation, etc?
How are his play skills?
Does he like other children? Is he appropriately social with them?

Thats the main question you have left to self investigate:
How is he with other kids his own age.

Does he seem natural with them, or does he seem a bit confused about what to do?
Or do they get a bit confused over him?

It's not going ot give you a straight answer to know this by the way.
He might just be brilliant and not give a crap about the other kids' limited play ideas.

Thanks for the great advice, everyone. I know that 21 months is young, but it's frustrating not knowing what's going on -- very tough psychologically to wait. I know thinking about this is bad for me, but I sometimes (usually!) can't help it.

He is getting early-intervention services and has been for the past several months. They sent a physical therapist and a special-ed teacher to evaluate him, as is standard. The physical therapist told us exactly what we expected: He's very delayed and needs help. The special-ed teacher surprised us by giving us below average marks -- we had, to that point, though he was ahead of everyone his age in cognitive stuff -- but her scores weren't low enough to recommend intervention. We're going to have a six-month review soon, so we'll see if anything changes.

I feel like he does get upset when we get upset, but getting hurt in front of him doesn't happen very often, so I'm not sure. I'll definitely check on that, though (when my wife isn't looking -- she hates when I obsess over these things). He most definitely has sensory issues. He doesn't like it when you touch his feet -- that, however, has been improving lately. The tooth-brushing thing I described is also probably related, as are some of his many food aversions. But he doesn't seem to have any sensory issues related to sound or sight.

As for language, he can and does ask for anything he wants. "Milk!" "Teddy!" That sort of thing. Occasionally he's starting to add "want," as in "want milk." I have a theory that his lack of gesturing has been because he's always had the vocabulary to express his desires. I forgot to mention earlier that he never throws tantrums -- he'll whine, certainly, even cry, but I don't think he ever has anything that qualifies as a tantrum -- and that, I think, is at least partially because he can always express what he wants and nearly always gets it. He can also express some limited feelings -- "tired," for example, or "hot," which he seems to have misinterpreted to mean "I don't want this food in my mouth for whatever reason."

However, like I said, he doesn't follow instructions and he doesn't respond to requests for information. Sometimes he says, "Read!" and then rejects books I try, so I've been asking him what books he wants to hear -- however, he appears to have no idea what I'm asking, even though he knows and can say the names of all his favorite books.

The physical therapist has described his play skills as "immature." She thinks that's related to his very slow physical development. For example, most kids his age will pick something up, bring it across the room, hide it, go back, get something else, bring THAT across the room and hide it. He doesn't -- but that may be because he physically can't. (He does hide things and retrieve them when he's sitting right there, one at a time.) The special-ed teacher who evaluated him seemed very distressed that he couldn't stack blocks and didn't feed his stuffed animals. He can stack blocks now, but he only recently started. Still no play feeding. His preferred method of play is to put things into other things, or to take things out, name them, then toss them aside. He likes drumming, sticking shapes in his shape sorter, he's gotten really into throwing lately, batting balls around the room.

I've heard he likes other children just fine, but I'm almost never around him when he's around other children (which isn't often regardless), so I couldn't really tell you. What I hear is he parallel plays, doesn't really interact much, but that's common at this age from what I understand.

Thanks for the welcome! I looked around and figured this was the right place to come, because, well, people don't really seem to know what they're talking about anywhere else.

You know, it's really interesting you should mention hearing issues. When a baby is born in the United States, the hospital is required by law to give him or her a hearing test within a day after birth. About half of babies fail this test because their ear canals are filled with fluid. If you fail, they tell you to come back in a month, and almost everyone passes that time.

My son did not. He failed again, and then again. Then he passed, but just in one ear. Finally, after months and a couple visits to a specialist, he passed.

With all this in mind, I'd wonder about his hearing, too -- and, in fact, have wondered. But usually, his hearing is great. He'll hear something said fairly quietly all the way across the room and repeat the last couple of words -- this happens all the time. Maybe it comes and goes?

Maybe he repeats because he's thrilled to death to be hearing? Allergies or repeated ear infections would give a sporadic sometimes hearing, sometimes not.

Although, in honesty, it does seem like your son might sometimes also get into a communicational mode of all sending-no receiving, which is okay, because it sounds like he also transitions out of it.

I have a speech impediment (speech difference) in which more of the air volume than average comes through my nose. I have a nasal voice. I have heard this called 'deaf speech,' in which a deaf person depends on the feel because he or she doesn't have the sound.

PS It doesn't sound like the physical therapist is being too helpful and may have already labelled your son in negative ways and is focusing on what he can't do.

He could be a late bloomer or he could have issues other than an ASD but it really is difficult to say at this age. Still I don't think early intervention would hurt to work on some language skills and such.

Hi Justcurious----

Welcome to Wrong Planet!

Well, I cannot diagnose your son over the internet, but all I can say is that he sounds like a carbon copy of my son (except for the food issues). My son was diagnosed as PDD-NOS at 2.5 yrs old. He was first diagnosed with low muscle tone at 1 yr of age. We started taking him to physical therapy for that. He finally walked at 21.5 mos. He cruised from about 13 mos until 21.5 mos. Could not stand or walk on his own unsupported. Through the course of the therapy, other things began to be pointed out to us. Lack of play, lack of showing us things. lack of pointing, lack of gestures, etc......

He also had words early on however, was doing alot of repeating.

I won't recap everything you wrote because like I said, your son sounds like a carbon copy of my son. With this said, try to remain calm and continue doing what you are doing with him. I would suggest continuing with the physical therapy as well as getting speech therapy and occupational therapy for him.

I TOTALLY agree with what the others have said about watching his interaction with his peers. This will be the key. Because when my son was alone, he didn't really seem to be that different. But when you put him in a room with other kids his age, it became glaringly apparent! My advice to you would be to get him around children as much as possible and just watch his interactions. My son would just completely avoid the other kids.

Now, to give you some hope.......Even if your child is diagnosed, it will be okay. Of course things will different than what you expected, but you will be able to handle it. My son is now 6 yrs old and is doing pretty well. He is walking, running, he can climb and jump. He still does not really join in and play with the other kids although he is becoming more aware. He is speaking in full sentences, he is asking questions and making observations. He is doing okay academically, he is reading and spelling. He gives us hugs and kisses on his own and it is clear that he loves us. He laughs and loves music and he plays in his own way. He is just a different kid, but we have accepted it and are doing the best we can to help him be the best that he can be.

I would continue with as much early intervention as you can (within reason) Just continue to engage and interact with your son as much as possible. I would also recommend reading books by Dr.Stanley Greenspan who developed the Floortime Method of therapy for children on the spectrum. Also, if your son qualifies, I would highly recommend starting him in a special pre-k program through the school system when he turns 3 if you are able to. We did this and it was the best thing we ever did for our son.

Hang in there. I know this is a very difficult time with the not knowing. But just keep working with and loving your son and it will all work out. Please come here as much as you like and don't be afraid to ask questions.......

It was around age two that I started noticing that my son was acting differently (socially) than his peers. But, at that age, it's really hard because they are still doing a lot of parallel play, etc. He met all of his milestones on time, and maybe even early in some ways. He also had excellent eye contact with adults most of the time. So,when I brought up my concerns with the pediatrician, they had a wait and see approach.

Well, as time went on, we noticed that he had horrible eye contact with everyone when he was in sensory overload. And, at age three and four, he still did mostly parallel play. When he was three, we finally got an evaluation done and found that he had some pretty significant sensory issues and social language issues. I totally wished at that point that I had just gone and contacted the early intervention when *I* noticed a problem. The asperger's diagnosis (well, just a school diagnosis, really) came at the end of preK, but he received supports all throughout that year. And, I am so happy that he did. We've been getting services for about two years now, and he's just really growing and blossoming in ways that I had feared he wouldn't. Some of it may have been just natural development, but enough of it was due to getting the assistance needed.

Good luck to you. I know the waiting is difficult. In no time, you'll be looking back and feeling like you can't believe that it was two or three or five years ago that you were still trying to figure this stuff out! just go with what you KNOW. You KNOW he has sensory issues. So, deal with that. You KNOW he has a need for PT, so do that... Because, most likely, even if you got a spectrum diagnosis, the therapies won't change.

my point is, it IS too early to tell a definitive diagnosis at 21 months, but it's definitely worth getting therapies being offered now. They definitely won't hurt!! ! And, it's when they are so young that you have chance of forming new pathways in the brain. They are so malleable when young.

First, I don't care how offensive anyone thinks this is, if you think there is something wrong with your kid, there IS something wrong with your kid. I went through hell because everyone reassured me that my son was fine, no problem etc. They thought they were being kind, but actually they were just not giving a damn about him - not taking our problems seriously.

I live in Italy and they diagnose kids with autism much younger here. They call it "at risk" of autism until they are 4, but it means the same thing. What this means in practical terms is that your child can go through all the screening, ECG, genetic tests and other assessment tests etc right away, instead of waiting till it is much further down the line and much more developmental milestones have been missed, before you take action to help and catch up.

I would suggest therefore that you do put your child through all the tests privately, if you can afford it. What you have described is exactly what my son was like and it is really typical of autistic babies.

I would also like to tell you most emphatically that it is also exactly typical of babies with Lyme disease. Lyme Borreliosis is now part of the standard autism screening in some parts of the USA but not all. Please make sure you get a proper test (Western blot not only ELISA) for this done on your son. My little boy's autism was caused by Lyme, and by getting him on antibiotics at a young age we have recovered nearly all his brain and he is nearly "normal". It breaks my heart to think how many autistic kids there must be out there whose autism is caused by lyme, and who could be treated and possibly cured.