Wait and see, or seek evaluation for 2 year old son?

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Hi everyone. I have been learning a lot from reading through the threads here. I was wondering if some of you might be willing to give an opinion with regards to whether it’s okay to “wait and see” with my 2-year-old son even though I have a few lingering concerns about his development.

I’ve read that a diagnosis for ASD doesn’t really happen until age 3, but on average around age 5. I’ve also read here that early exploration into evaluation and intervention doesn’t hurt, it can only help. I’m just not sure that seeking out a diagnosis/label just yet would have any real benefit other than to have an “explanation” for his peculiarities.

Overall, my son is a happy, interesting child, and I love him for the individual that he is. I will say that I didn’t think that mothering would be this exhausting, but maybe that’s just how it is with toddlers. Or maybe there’s an extra reason why it feels so hard sometimes.

Some days, I think he’s just being a 2-year-old boy. Other days, I think he must be neurodiverse because surely a neurotypical person wouldn’t act like that, even at 2. But I don’t have much experience with neurodiversity, so that’s why I thought I’d turn to this community for thoughts.

Here’s a list of things that make me think hmmm:
- He’s always been a “spirited,” “strong-willed” child who’s hard to physically manage when he’s upset. It could just be because he’s a strong, healthy boy who’s always been big for his age.
- He’s often in his own world and doesn’t always acknowledge my husband or me, even when we say his name multiple times. When he does respond, sometimes I feel that it’s because the sound of our voice alone, not the words or their meanings, distracted him from what he was doing.
- He sometimes gets fixated on wanting certain things at certain times, often with no logical explanation. When we can’t understand what he wants, he has a tantrum/melt-down. Sometimes he’ll snap out of the melt-down, and other times there’s no stopping that train. I liked what someone had said on here, that it’s like the melt-down pushes a reset button or something once he recovers. This could be typical 2-year-old behavior for our son, but his lack of language expression makes it difficult to endure sometimes.
- His language development seems to be a little delayed. He’s been learning single-syllable words slowly and steadily, but no two-word phrases yet.
- He points to things, but often we can’t figure out what he’s pointing to.
- The stimming I’ve noticed seems typical for this age from what I’ve read: spinning/running in circles or running back and forth when he’s excited, toe walking occasionally, and some hand flapping (I’ve only noticed that a handful of times). His vocal echoes take the form of words he already knows or sounds that he likes. He’s always been a vocal child, though.
- He doesn’t really look us in the eye. Only on his terms, when he wants to, which isn’t often.
- He likes routine but isn’t controlled by it.
- The only things he lines up are his toy cars, but I think that’s because he saw his daddy do it once (and only once).
- He has always liked company (mommy or daddy with him) while playing; usually doesn’t play independently for too long. But he’s not afraid of other adults or children. He’s rather bold with other children.
- He responds to some directions but not all.
- He likes to stack things up, especially baking supplies/containers. This seems like typical 2-year-old behavior. The oddity is that he stacks the same things up every day, usually in the same way with some variation (then once he’s accomplished his task, he’s done with it).
- He has these sort of head shakes, like a person trying to pick up something very heavy. They only last for about 3 seconds; I notice them maybe once a day. Sometimes I think they are involuntary, other times I think he’s doing it on purpose maybe because he likes the sensation.
- He also has done big head shakes, like wagging his head back and forth to gesture no, which can last upwards of 10 seconds, but it seems like when he does this he enjoys the motion. I haven’t noticed this lately.
- He sometimes hits us when he is upset (often in a flailing about way), and when we say no and/or walk away and/or place him in time out (I know that some people discourage time outs; I’m open to suggestions here…time outs seem to be the only way to separate ourselves from that behavior and to signal to him that it’s not okay to do), then he hits himself in the head or mouth. This kind of aggression usually happens in the evening when he is tired.

My thought for now is that only time will tell if things improve, stay the same, or intensify. To what extent is this an acceptable way to approach it? I don’t want to be in some sort of pre-denial phase where I hesitate to seek help for my son if he truly needs it. But I do feel that if he were 4 and still acting 2, then there would be more cause for action. He’s only 2, and he’s never been 2 before. Also, I can’t say that he’s still acting like a 1-year-old because he has picked up some language and is learning how his body and muscles work.

What I’ve been telling myself is that if some of these peculiarities were more extreme/severe at this age, then I would make my concerns known sooner than later. But I guess what I’m doing here is sort of just that…making my concerns known on some level. So I’m open to any and all thoughts.

Thank you for your time.

~ Tiffany

Well, I'd probably wait and see.
With my DS (14) he was diagnosed right on 2. He was very obvious, no question marks at all.
DS (5) was 3.5, lots of wondering on our part since he was about 6mths, but no definite feelings until he was 3. I kept good records on him though, which is what i would suggest for you. Write it all down, when he is doing things, how it all looks, so that if you need to get him evaluated the info is all there. Also, if you feel there are areas of delay, start working on those now, just as you teach any child but focus more on the areas where you see he has difficulty. If you have never had a 2 year old child before, there is a lot of the unknown too. 2 year olds are odd, whether NT or on the spectrum. Those stimming things, they all do it. I'm always laughing at the 2 year olds at playgroup (I have an NT one at home too), running in circles or running looking up at the ceiling- straight in to a wall! They also are repetitive in speech and actions, doors/ drawers opening and closing, stacking and unstacking etc.... If they are NT though, they move past this stage and often with ASD these things become more obvious once the child gets older.
So, I'd wait... but I'd be watching and taking notes and working to help him all the same... and keep re-evaluating his progress.

The other side is that it doesn't hurt to get him on a waitlist to be seen, often the wait can be very long and you don't really want to be in the position of deciding he really should be seen by someone, but then you need to wait a year for that to happen. He can always be pulled off a waitlist if it is not needed (here, anyway). So, I guess that depends on what kind of wait you may have, wherever you are. Wouldn't hurt to make some enquiries about that. We have child health nurses who can help check children's development in Aust. They are often a first point of contact with questions like this. If you have something like this they may be able to help you access some early intervention etc... without a diagnosis needed. Just a thought.

Good luck
edit. I picked the first option for DS1, very obvious... but I would have picked "unsure at 24 months" for my other DS with ASD...we were watching for it too because of his big brother.

Thank you, miss-understood.

We got a diagnosis at 4. We probably could have gotten one earlier if I had been on the ball and listened to my gut more. I am not sure if that would have been better or not. It probably would have as he would have had more social practice, earlier. At that point I did not know how much help he would need in school, and I mainly thought he was quirky, you know. He was also strong-willed and lined things up, but the ped at the time did not think it was autism and thought it was something "else." (My son is super snuggly, and very smart, and peds are not as trained about PDD as you would think to know that not everyone is a stereotype.) I was scared of what "something else" could be and it spooked me.

I would go for testing and see.

My daughter got a diagnosis last year, when she was 6 1/2. She's been different from the day she was born, but never stereotypically autistic, which made it harder for me to figure out what was going on with her. She makes eye contact, when she's speaking to people, doesn't stim, other than thumb sucking, which is common anyway, has never lined up toys, but does like to put things into containers. She just seemed difficult/ awkward/ contrary, with a few quirks, always demanding specific cutlery, etc, never doing a thing she was told, but never cheeky or naughty, just engrossed in playing, drawing, etc. She was almost 5 and already in school before it dawned on me that she might have autism. There was a light bulb moment, when I stumbled across something about autism, online. Prior to that, I had thought she was 'spirited', 'strong willed' or maybe had mild ADHD. I don't know if she'd have gotten a diagnosis sooner, I doubt she would have. She might have gotten a diagnosis of sensory processing disorder, however.

Your child sounds a lot like mine at that age. My son was dx'ed with PDD-NOS. He went through intense early intervention. His tantrums were epic, and even his ABA therapist would leave sessions with him with bruises on herself. Get him evaluated--what's the harm? It is better to correct as much as possible early on otherwise certain behaviors can intensify and will be much harder to undo later. Any developmental delays will increase the gap between him and NT children the longer those issues are not worked on. I do believe that without EI services my son would be acting MUCH different than how he does now--and not for the better.

Thank you, Dara, ASDMommyASDKid, Mummy of Peanut, and Mikassyna.

At 24 months, my primary concern was my son's delayed speech. He only say "uh" and "ma" so he qualified for speech therapy. By three he was developmentally appropriate. It didn't hurt and probably helped. I was concerned about autism, but didn't know about Aspergers.

The school early childhood programs often focus on needs rather than diagnoses, so he may qualify for some services and you can get help and still wait and see for a dx if you want.

My son was similar -- no stimming, lining up toys, or other obvious repetitive behaviors (although when he would play with a dump truck he would do the exact same 21 step sequence many times in a row), strong willed, tantrums, mild speech delay (3-6 months behind). His first preschool teacher noted that he wasn't interested in the other children. He was tested with the ADOS (module 1) by Early Intervention at 31 months and deemed "strong willed but not autistic". EI also said his speech delay was not severe enough to qualify for services, so we paid for 6 months of speech out of pocket. His social difficulties did not become obvious until about 4 to 4.5, when we pulled him out of one preschool because he seemed to be ostracised and always in trouble, and the next one kicked him out after 3 months. At 5 he was retested with the ADOS (module 2) and diagnosed with Aspergers.

If I had it to do over, I would have kept him in speech therapy longer, graduating to a paired peer and then to social language/skills class of 3-4 kids.

I would suggest you definitely get him into speech therapy. (Some Scottish Rite centers offer free speech therapy if cost is an issue.) If there is a free or low-cost evaluation available through Early Intervention or your insurance, go ahead and do it. If not, and cost is an issue, you might wait until age 3.5 or 4. At these ages you'll also have input from the preschool teacher about how he is doing socially and developmentally compared to the other kids. I'd also suggest a play-based preschool with a developmental focus rather than an academic preschool.

With dd5 I was always very, very suspicious. Early on the doctor blew me off when she met physical milestones (rolling, crawling, sitting up, walking) just a bit late. She was just barely on the far end of normal for all of these. The doctors claimed it was because she was very large which makes those things harder to do (she was very big, tall and 99% for weight) and lazy. She smiled late too, didn't crack a real one till about 6 months old and then it was over a mobile that she loved staring at for hours. Then the talking. 12 months nothing. 18 months "cup" and "more". 20 months, no change. 21 months, no change. 22 months, no change. 23 months, talking like a 3 year old. The doc considerred her speech delayed at 18 months, but when I brought her in for her 24 month check up she said see? She's fine, see how smart she is? From age 2 to 3.5 or 4 she was realtively well behaved (And bright). By well behaved I mean no tantrums, no melt downs, easy to take places. If you asked her to do something? Well... probably wouldn't get done.

Then the real issues started that could not be ignored. Weird fixations, perseveration, anxiety, melt downs, stimming, strouble doing certain things like using a fork or proper bathroom skills because obvious and no longer an "of course she can't do that she's only 2,3,4" or "She'll grow out of it" sort of thing. She she got diagnosed a little bit before she turned 5. So I knew something was up for a long long time, I just didn't know what, nor did I know what, if anything, to do about it.

With my other daughter, she is turning 3 in a few days. Jury is out. She has a lot in common with dd5 but is also very different.

I answered with the response that indicates that in hind-sight, you could see it by two, because I think your story more resembles my son than my daughter. My son was not diagnosed with anything until he was 7, then it was SPD, ADHD, and NVLD. His NVLD seems like "mild" aspergers if that makes sense. He has many characteristics of aspergers, just not to the degree one would usually find in aspergers. My daughter, on the other hand, was already diagnosed at 2, because she was much more typical in her presentation.

I will say that I would not wait, but that is just because that is my personal opinion. I realize my opinion is heavily weighted because of my own circumstances, but that others have had the opposite experience. For my son, I wish I could have turned back the hands of time. I did have him evaluated at 5 and I was told that he was "smart" and had "extreme exuberance" and then I was summarily brushed off. In hindsight, I know I should have pushed harder and not let the school district dismiss him the way they did. But I was naive and believed them when they told me that unless he needed a contained classroom or he fell behind grade level, they couldn't do anything (BS, we all know). I believe my son is still suffering due to lack of earlier support. He is now 11.

I am aware of other cases, though, in which children who initially looked a lot like my son, now do not have the issues he does, so it is possible to do nothing and have no negative consequence. I suspect my sister's kid has mild asd or AS, but she has never been evaluated, and although she is only 4, she seems to be doing OK. In may ways I am a lot like my son, and never knew it (why) until the last few years. I have a graduate degree, work full-time, and am a single mom who somehow manages. So clearly my lack of early intervention did not doom me to a life of chronic failure (though I sometimes wonder...."where would I be if I would have gotten the support I needed?")

I just think that since there is no harm in an evaluation, it is the "safer" route. I honestly believe that if my son would have had OT for both fine motor and sensory integration when he was young that things would be different today. But I knew nothing of what I know now and simply--naively--trusted the school district to do the right thing. When they said he needed nothing, I resigned myself to thinking he was just a "spirited" kid. I was wrong. That may or may not be related to your current dilemma.

The only disadvantage to an early evaluation is if the evaluator concludes that he does not have ASD (as in our case) and you are given a false sense of reassurance that his develoment does not need to be watched carefully. It would've been much better if someone had told us that although DS didn't currently appear to have autism, kids with a minor speech delay have a higher risk for Aspergers and ADHD, and given us a more detailed list of developmental expectations (such as cooperative play and fine motor skills) to track.

If you don't go for an evaluation, you should still treat the symptoms with speech therapy, OT, and become educated on behavioral techniques. It's hard to find books on HFA/AS in preschoolers, one good one is Asperger Syndrome and Young Children: Building Skills for the Real World by Teresa Bolick

I don't think we ultimately lost a huge amount of time for intervention, maybe 6 months to a year, but we have really struggled to find the right services and assistance even with the diagnosis.

My son was great at 2 as well. No meltdowns, tantrums, he was easy going, go with the flow kind of kid. I used to say he would grow up to be a pushover casue he was sooo passive. He could be playing with a toy, and a kid could come and grab it out of his hands. He would just find something else to play with. Looking back his response was far from typical. He wouldnt even look to see where the toy went, he would just move on. not typical one bit.