Confused about my 19-month-old's development - Getting mixed signals from professionals

[u/EdwangBuffalo]

Hi everyone,

I'm seeking advice about our sweet 19-month-old boy. My wife and I have had occasional concerns about his development since he was 12 months old, though his behavior varies significantly depending on the day, person, and environment.

Current Behaviors:

• He's very affectionate with us parents (hugs, kisses, joint attention) but rarely shows interest in his 4-year-old brother
• He has a speech delay, only saying and signing a few things
• He responds to his name about 50% of the time
• He rarely points to things out of reach, though he points regularly when looking at books
• He tip-toe walks about 80% of the time but is flat-footed at rest
• He occasionally stims/hand flaps, though I'm unsure if it's more than a typical excited toddler

Positive Signs:

• Follows simple commands ("bring it here," "press the button," "give me a kiss")
• Follows our pointing
• Participates in kids' songs with appropriate actions (The Wheels on the Bus, Head Shoulders Knees and Toes)
• Engages in pretend play
• Enjoys new places
• Handles routine changes well
• Shows no repetitive behaviors

Here's where we're getting mixed professional opinions:

1. Family Friend (Licensed Clinical Psychologist): Suspects he may be on the spectrum (level 1-2) due to:

   • Eye contact that sometimes lingers into staring
   • Inconsistent name response
   • Generally flat affect (either happy or neutral)
   • Difficulty engaging him in play

2. Early Intervention: Didn't qualify for services at 17 months (they're reassessing this week)

3. Regular Pediatrician (18-month checkup): Zero concerns, citing:

   • Appropriate response to strangers
   • His 20+ years of experience in identifying developmental issues

4. Family Friend (ER Pediatrician): Leans toward spectrum diagnosis, noting:

   • Eye contact seems more like room-scanning
   • Strong fascination with light-up/noisy toys

5. Speech Language Pathologist: Despite regularly referring children for ASD evaluations, doesn't think he's on the spectrum

We're finding this whole situation emotionally exhausting and confusing. We have a formal evaluation scheduled for his second birthday, and meanwhile, we're: * Continuing speech therapy * Starting him in daycare twice weekly for socialization

Would love to hear from anyone with similar experiences. How did things turn out for you?

[u/CallipygianGigglemug]

It seems milder symptoms are harder to diagnose at young ages. My son was evaluated multiple times over his life and received different results as he got older.

Age 3-4: Global Developemental Delay (not autism, not fragile x). Lower IQ

Age 7-8: ADHD-C (not autism)

Age 16: ADHD-C, Mild Autism, Lower IQ, Learning disabilities in reading/writing

When they don't have severe symptoms like total lack of verbal skills, or eye contact, than I believe a lot of young children don't get diagnosed. And I know that previous diagnosing protocols had limitations, like they were guided to pick either adhd or autism instead of allowing both.

[u/EdwangBuffalo → u/CallipygianGigglemug]

Thank you! It’s a weird spot to be thankful for mild symptoms but it’s also maddening to be told completely different things by various experts.

If you don’t mind me asking, how is your son’s quality of life today? How is yours as well?

[u/CallipygianGigglemug → u/EdwangBuffalo]

He's doing alright! He's in that weird limbo of appearing physically healthy, big and strong - but being mentally and emotionally delayed. So people dont always know where he fits in. Even I never know what he's capable of until he tries it, so I've learned to let him try.

Long answer:

Childcare was a big blocker. He kept getting kicked out of daycares/camps for behavior issues so my ex husband had to stay home full time while he was younger.

We did early intervention at 2-3 yrs old for speech and physical therapy. And then he's had an IEP since preschool, allowing for various services and accomodations at school. I've spent a lot of time managing his school career. You have to be your kid's advocate. I've found some teachers are better than others, and it's OK to speak up.

We also tried a lot of sports but he was never very successful. He doesn't have great body control, nor does he tolerate taking instruction well. He doesn't make friends easily so socializing never went well either.

He hit puberty and the influx of testosterone with his existing issues was a recipe for disaster. We've spent the last few years dealing with aggression, violence, and sexual deviance. I think we're on the upswing now so that's nice.

He's had a really positive last few months, so the outlook is improving. We're focusing on post-highschool plans and what his future adulthood will look like.

As far as me, I'm surviving. It's been a challenging, and isolating parenting experience. I've been a single parent for like 7 years now. I have no idea what I'm doing lol And every day feels like a surprise.

[u/AliceOnChain]

Similar to my 3.5 year old. His official diagnosis in global delay in speech and social domains (diagnosed at 3 years). Made leaps of development socially and improved receptive language but still delayed in expressive. Grew out of some red flag behaviors but does have some obvious sensory processing issues. Hearing checked multiple times and found to be normal but they think he has low sensitivity to auditory input (hence the low response to his name esp when he was younger and difficultly in following two step commands + some mix up in pronouncing some letters.. this cannot be confirmed till he’s around 5 or 6 because the test needs his cooperation.

We recently started OT with sensory integration and that seems to have helped him have some progression in expressive language after a plateau for a couple of months so I would recommend you look into that to see if it would help. For my son, next steps are to assess him for ADHD because we have family history and he also needs to have an IQ test to rule out intellectual disability. There was talk about genetic testing but it seems as he is improving, it may not be indicated. We see the developmental pediatrician again when he turns 4.

[u/EdwangBuffalo → u/AliceOnChain]

Thank you for sharing your experience and the tip on OT with sensory integration. It’s good to know not everyone has a linear path! Do you have an idea of what contributed most to his social development leaps?

We may do ASD centered therapies in addition to speech while we wait for official evaluations but something “unique” with my son, if he is indeed on the spectrum, is that he doesn’t avoid or seek sensory inputs currently. 

[u/AliceOnChain → u/EdwangBuffalo]

I feel it was mostly him being developmentally ready and having behavior therapy (they used the Denver early start model). When he turned three, we saw the developmental pediatrician (around his third birthday), he advised adding behavioral therapy and occupational therapy. At that time, he was in speech therapy in one form or another for 18 months and day care for over a year. We had to delay behavior therapy for 2 months because we had a national holiday then my father in law passed away but during those two months, we were noticing improvement. Behavioral therapy helped improve his joint attention, taking turns, staying on task instead of jumping from one thing to another. Also made him vocalize colors, shapes, animal sounds…etc as those were used during sessions. We added OT late and I wish we did it earlier. One reason was because I wasn’t sure what it entailed and only after research, I realized that a lot of his behaviors are sensory. Walking on tip toes can be a hypersensitivity to tactile sense, not responding to name can be a hyposensitivity to auditory sense, chewing on everything, running in circles…etc. you mentioned fascination with lights and loud toys that can also be related to sensory differences.

[u/EdwangBuffalo → u/AliceOnChain]

Once again very helpful. I really appreciate the thoughtful response. It sounds like your little one is on the right track (with a great parent to boot)!

[u/snow-and-pine]

I haven't yet grasped the purpose of diagnosis yet. My child has various delays he needs extra support with which to me is the biggest reason to get a diagnosis, when extra support is needed. However my child is already getting support in all the areas- speech, motor skills, social skills. I kind of feel he will catch up and improve in time so I am unsure of why I should get him a diagnosis. I wonder if the label would hold him back in some way in the future. So I have a different perspective on it and would say if there's a benefit to getting a diagnosis maybe insurance purposes?? I'm not sure.

[u/EdwangBuffalo → u/snow-and-pine]

I think we’re aligned in how we view “labels” but I also want the formal evaluation to put us in front of the proper experts who can guide us on what help to seek and also to set expectations if that makes sense. And yes, insurance because even just speech therapy  out of pocket is expensive lol

[u/snow-and-pine → u/EdwangBuffalo]

Yeah, that makes sense. All the services here are free so there's no benefit of insurance and he seems to get any referral needed regardless of diagnosis or not 🤷🏻‍♀️. I am learning more every day though so I may change my perspective.

[u/EdwangBuffalo]

FWIW he’s “low risk” according to the ASDetect app. Perhaps it’s a version of social pragmatic communication disorder since he lacks the repetitive restrictive behaviors?