Almost 2 years old...update

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Hi everyone. I've posted on this forum before and thought I'd come back to post an update and hopefully get some of your great feedback. Also just venting

My son is now 23 months old. I've been worried about him from the very first few months of his life, as he never had good eye contact and never really gazed/stared into people's faces as many other babies do. He has qualified for EI services and has been in their program since just 9 months old.

At 18 months he has been seen by a pediatric neurologist who specializes in autism and she said she is seeing "red flags" and "there is a problem" but refused to give a formal diagnosis. She recommended ABA which we have been doing for a while now. Strange thing is, his ABA therapist thinks there is nothing wrong with him, and his speech therapist has recently told us that he is "right on track" and she will recommend pausing therapy. My entire family thinks he's perfectly normal and that I've went crazy.

Unfortunately, I'm still not convinced. His still only looks at people very briefly and not too often. He very rarely responds to his name. He rarely points to anything even when we ask him to. He does not seem to have any joint attention. He has roughly 50 words now, but he uses them out of context many, many times. For example, he will say "bye bye" tens of times a day even without anyone going anywhere. He very frequently says "oh no" even though nothing happened. Also, he mostly uses his vocabulary to label things, not to converse. He doesn't respond with "yes" or "no" to our questions. He never had and has no stranger anxiety. He seems perfectly OK being left alone without our presence. When we go to public places he has no problem taking off and leaving us behind. He is obsessed with toy cars (although I realize that may be normal). He never responds to "come here" unless we have some new toy or something that interests him. He is not putting two words together or using phrases. He never says hi or bye when someone is entering or leaving. He never imitates anything we do or say, even when ask him to (e.g. "say hi"). He does not smile in response to a smile and does not laugh in response to funny faces. He does not bring us things unless we ask for them. He doesn't seem to have any imaginative play. He seems very hyperactive. He has this strange habit of kicking his foot when he falls asleep (perhaps normal?). He struggles with us many times when we need to get him in the car seat.

On the positive side:
He can label some objects such as car, truck, train, bicycle, bannana, apple, ball. He recognizes about 4 colors and can name them. He recognizes 2-3 shapes. He can count to 10. He will usually respond correctly when we ask him what is the color of something. He will sometimes give us a kiss when we ask, but only if we're in proximity. He gives high fives when asked. He will give us a taste of his food if we ask and he's in the mood. He can ask for water or milk when he wants it (although sometimes he asks and ends up not wanting). He will sometimes hand us objects when we ask for them (only if he is already holding it). He will use the word "open" when he wants something opened, and "up" when he wants to go up or "again" when he wants something repeated, but he says them without looking at us. He plays with a variety of toys likes legos, tinker toys, trains, cars, etc. He does not stim. He does not seem to have anything repetitive. He has no sensory issues. He does not line things up. He has no meltdowns (that's not to say he doesn't get frustrated sometimes, but it only lasts a few minutes at most).

Appreciate all your thoughts and opinions!

Thank you so much for the update! And you've certainly received some encouraging news thus far. Question - are you still considering neuropsych testing? Although expensive, that may be a way to put your fears to bed, or accurately identify which developmental challenge your son is facing, if indeed he does have a developmental difference.

A neurologist specializes in things like epilepsy and cerebral palsy -- they are generally not experts on autism, although you say the one you saw does specialize in it. You want to see a developmental psychologist or developmental pediatrician, and get a test called the ADOS (Autism Diagnostic Observation Schedule) if the neurologist didn't do it. It is an extensive test that requires special training to administer, and is considered the gold standard. I'm not sure whether a neuropsychologist (which is different from a neurologist) is appropriate for a toddler, my impression is that they are more used to working with school aged children.

Do you feel he is making progress with the ABA therapy? If I had a toddler I suspected of having autism, I would look into DIR/Floortime (look for books and videos by Stanley Greenspan) or the Denver Early Start model.

It may also be that your son is too "high-functioning" to get a diagnosis yet. My son had similar speech issues (which turned out to be more characteristic of dyslexia than autism) but was more engaged socially. He was tested with the ADOS at 31 months, and deemed not autistic. At age 5, he was retested with the ADOS and diagnosed with Aspergers (back when that was a separate label). It took getting kicked out of two preschools for professionals to acknowledge there was an issue (and even then a psychologist tried to convince us he just needed another year to mature.)

Actually, my kids' neurologist treats nothing but neurobehavioral developmental issues. All ASD, ADHD, OCD, TS, etc. No epilepsy, no CP.

Just sharing info. Some pediatric neurologists specialize in ASD and cousins.

However, the first pediatric neuro we went to was of the epilepsy kind and he was virtually useless.

We've seen all three over here, neurologist, neuropsychologist, and developmental pediatrician. Initial ASD testing was done by the dev pediatrician, with a second opinion from a neuropsychologist. Follow up monitoring was done by the neurologist. I think who can do testing depends on the subspecialty/training. But ADOS is absolutely typically regarded as the gold-standard test, in my research.

Edited to add that my children were tested twice each before they were 2 years old.

Hmm... This seems to be a day for parents posting concerns about completely typical toddler behavior.

Walk into any day care and you'll see a bunch of young 2 year olds who are playing with the same material but completely ignoring each other, unless someone takes something they want. And as for meltdowns, if he doesn't have them now, just wait. He'll have them soon enough!

ABA is a form of training, like dog training, where we reinforce certain behaviors and work to extinguish other behaviors by using physical reinforcers like a small bite of food or a preferred play item. It's not teaching, which involves instructing your child in the ways of the world. It's training to look normal. I understand that some kids respond to this, but if you're kiddo has enough awareness to be taught like a human being instead of trained like a dog, why wouldn't you jump on this?

If your ABA therapist is saying that he's beyond her scope of practice, listen to her! So, it sounds like maybe he's one of us highly able autistics and that you, as a very knowledgeable parent picked up on it early. Its too early to tell for sure, but it sure sounds like it. All the intervention in the world isn't going to change that. Its not like vitamin C to prevent scurvy. You can't give an autistic the intervention before the behavior shows up and hope that they'll never have to go through being autistic.

I'm sorry, I know that sounded sarcastic. I can't think of a kinder way to phrase that right now.

A lot of autistic people never do eye contact and live just fine without it. A lot of us have this echolalia stuff, and again, it's not correspondent with intelligence or eventual success in life. You're correct about the eye gaze thing. It's a red flag, and his not giggling at grow-up's silly faces is also a red flag.

I would suggest you keep working with him, but let go of this high intensity intervention model. I bet you can keep him qualified for speech if you push it. He sounds like he's on the low end of the range of normal. (Which honestly, for a little boy, is not unusual.)

He's not two yet and he's saying words. I don't think he's that bad off.

I remember your old posts about your concerns about your kid. I remember the very first ones, then the ones where more time had passed, and he still wasn't meeting milestones/ engaging much. I remember thinking that it sounded like your kid was probably on the spectrum.

I think it's possible that he is responding really well to intervention, and so is presenting as more "typical" now. Only time will tell, at this point. You will have much more of a clear picture once he starts socializing, or not. Although my son had many "red flags", he was not formally diagnosed until he was 7. We knew he had sensory issues, and problems with emotional regulation, etc., but it wasn't until he got older and was still doing parallel play while other kids were interacting, was clearly not understanding the back and forth of a conversation, and misreading social cues that it all became more clear.

It's also possible that he was just delayed, and is now catching up. My friend's daughter did not make any eye contact, didn't babble, stimmed, etc. as a baby, then suddenly met all of her milestones and began to develop typically. She did have intervention.

I think you should continue trusting your gut. I'm sorry your family thinks you are crazy, but you know your child best. I don't think you need to do too much at this point, but watch and wait. Or, as others said, try to get him an ADOS test. My son was just diagnosed with "social/ emotional delays" for a long time. I don't know that he would have been diagnosed with Autism at age two, but it all became more clear later on.

Thank you everyone. Your responses are very reassuring and definitely made me feel better. I needed to know there's hope for him. I've already come to terms with him being autistic, I just want to give him the best chance at maximizing his potential and hopefully being independent as a grown up.