Update on 3-year-old with possible ASD

Post Reply New Topic

Hi, I posted awhile back regarding my middle son, who is 3 and has (had?) many autism-like traits. He's been referred to the leading autism specialist in our area, but there's a several-months-long wait to get in for the evaluation. So we're still waiting.

Here is my question: We've seen a TON of improvement since his birthday in November. Things that had been problem areas, such as his speech and his routine-related meltdowns, have gotten to the point where he's almost indistinguishable from other kids his age. We are still working on clothing-related meltdowns, but we were able to get a jacket on him when he wanted to go play in the snow recently. He has allowed toys that previously didn't "belong" in his room to come into his room. He will respond to people outside the family about 30 percent of the time, which is a vast improvement. (Being social inside the family has never been much of a problem -- he is very happy and affectionate at home, which is another reason that I often wonder if he even has ASD or just a coincidental constellation of similar neurological issues.) He has also begun playing pretend and letting me read him books in the past few months.

Since he no longer flaps, lines up toys, shoves people who try to initiate social interactions, etc., has almost lost his vocal tic where he repeated the last consonant three times, only uses echolalia when tired, and has begun speaking, is potty training, and has made progress on his meltdowns, I am wondering about taking him to the specialist.

1. Does he need a specialist? Would we just be wasting resources? Or would therapy still be helpful for a kid with what seems right now to be mild autism? (Input from Aspies or people diagnosed with PDD-NOS who have had therapy would be great -- my goals are for him to be happy and self-sufficient as an adult, not to turn him NT.)

2. Would he even present as having ASD? Most of his current issues arise at home, during getting-ready time or when he is tired (i.e. the echolalia).

3. I've heard of kids whose AS symptoms seem to disappear -- only for the kids to "regress" later. Is this common? Since the wait is so long, I'd hate for James to lose his spot in line and have to start the process all over again when he's older.

Thanks in advance!

How does he relate to other children? When my son is around just adults, he seems almost normal. It is when he is in a group of children that his lack of interaction is so apparent.

Also, does he have repetitive behaviors or special topics of interest? At about 2.5, my son became very consumed with car makes and models.

How is his back and forth communication? Is he talking to you or just at you?

What is your gut feeling? I think I would just wait until it gets closer to the appointment, and then you can cancel or postpone it. It sounds like he is doing really well.

I'm very new to all this too, so maybe don't have a right to comment but I had a similar story to yours. I made an appointment to see a top specialist in my area and I delayed it once (for about 4 months) because what I thought was my son's main issue - i.e. he wasn't speaking - was no longer such a problem because he started to speak. I was going to delay it again, but was gently advised not to by my son's playgroup teacher. So we went and my son was diagnosed with ASD and now we are moving forward. For us, having a diagnosis has meant access to funding and services for our son that would otherwise be unavailable. For us the specialist was able to see things in our son we'd never really clearly noticed before. If your son does not have ASD then you'll find this out too - but being in the dark and not knowing is no fun at all. Don't be afraid of your son getting an ASD diagnosis when he doesn't really have it - all doctors are very conservative and will delay making a diagnosis until they are really sure.

He relates well to his siblings but generally ignores other kids at daycare (we spend about 90 minutes a day at the gym daycare, where we've gone since his older sister was born). His caregivers there say he HAS been letting other kids play alongside him lately. Often he will either hang back or run away from kids he doesn't know well. If they try to press the issue of playing together, he's been known to shove them, but that's been getting better lately. He still does not initiate play with anyone, including siblings, but is happy to join with a few select kids he likes.

Back and forth communication depends on the day. Sometimes he expresses his needs and sometimes he just "narrates." When he's tired, he'll just repeat what I'm saying. His speech skills aren't great (he was mostly still jabbering up until recently) and he mainly just talks about diggers, front-end loaders, dump trucks and trains. However, since his recent language explosion, he's expanded his topics of interest to include animals and colors. Still not much in the way of two-way conversation, but then, it's WAY better than earlier this year when he talked in staccato robot gibberish, like "Jabberjabberjabber DIGGER! Jaberjabberjabberjabber TRAIN BRIDGE!"

My gut feeling is that he's on the spectrum. It's been pretty apparent since he was about a year old. I just don't know if he will seem that way to an evaluator, or if they will feel I'm a crazy person wasting their time! Since he does smile and make eye contact, I think that when people first meet him, they peg him as "normal" and then are horrified at his "bad behavior" when he has a meltdown, and think he's spoiled.

Of course, looking at my answers to your questions, it does seem obvious that I should at least wait until the appointment! Being the mom, I tend to look on the positive side and see only the improvements and not the things that will be hurdles later on (like having a conversation that doesn't revolve around heavy equipment). Thanks for the feedback!

Thanks, aidysmum -- your response was very helpful and sounds so much like our situation. I somehow missed it while I was typing, and saw it when I came back just now. Makes me feel better knowing that we may get a diagnosis anyway. Sometimes it's hard for me to look at my son without my Mom Goggles, which tend to see only the progress and not the things that are different. Plus, a lot of things, I didn't even know to look for. Like my GP asked about lack of physical coordination -- did not even know that was a sign! And just today while browsing the boards, I realized his ridiculous insomnia is another thing I didn't think to chalk up to ASD. So yeah, I can definitely see them pointing out stuff that I might not be able to notice as his mom. Thanks!

In my opinion your son still sounds like he is highly likely to be on the spectrum. The whole thing of him playing alongside other children but not really with children particularly stands out to me, but you have highlighted quite a number of traits not just one or two. If he is higher functioning that you first thought great, if he keeping improving even better but keep your place in the line and get him assessed. You have a genuine concern and you're not wasting resources.

Hethera- I know what you are feeling. I was like that too. One day I would think he had ASD, and the other I would not. My son had great eye contact, and was very social with adults. I thought how can he have autism? My son was a very late walker (21 mos.) He had been receiving physical therapy for that. The physical therapist wasn't sure that he seemed AS. But my friend who is an OT encouraged me to get him evaluated. The therapists pointed out things to me like "is he pointing to things", "is he showing you things" , he didn't want to use his hands to do things.
The therapists sort of kept gently encouraging me to take him to be evaluated.

Anyway, at 2.5 we brought him to the developmental pediatrician. My son also had speech. He had lots of words, but he was not using them to communicate with us. He was memorizing entire books and phrases from tv shows. The doctor diagnosed him with PDD-NOS (Pervasive Developmental Disorder Not Otherwise Specified.)/possible Asperger's.

Shortly after the appointment, my son started developing an intense interest in car makes and models---especially volkswagons. He wanted to touch cars everywhere we went.

Over time, I really started to see his lack of interaction with other children. It really started to sink in.

However, we have placed my son in special needs pre-k at 3 years old, and he is now 4.5 He is progressing very well. His back and forth communication (mainly with us) is improving tremendously. His physical issues are still a challenge, but he is walking very well, running fairly well, and he has learned to jump. He is more aware of children socially,but just doesn't care to interact with them much. I do feel much more hopeful now than I did 2 years ago.

I remember not wanting to hear the words from a doctor, but I knew deep in my heart there was something wrong. As mothers, we have to trust our intincts. Maybe you should just go through with the appointment and if he isn't diagnosed-great. But at least you can stop worrying. Either way, with lots of love and patience, our children will learn in their own way and time. It can be challenging at times, but I think there is hope. I don't believe the doctor will think of you as wasting his or her time. This is your child.

On a side note, you are fortunate that he has siblings. My son is an only child, and more than likely will be because of my age. I think siblings do a world of good in teaching him how to interact with his peers.

Best of luck to you!

Oh, I also wanted to mention that my son never lined up things---that was also why I didn't think he could have AS!

My son has also had challenges with sleep. That one can be tricky, because some NT kids have difficulty too.

LOL, don't I know it. His NT sister stayed up playing with her toys for hours after bedtime at that age. And my DH and I have both always suffered from insomnia. All three of us, however, have this problem because of ADHD, so until I read that it was common in AS kids, we just assumed it was because that's how the rest of us are.

It's really common for kids with Asperger's to act differently depending on whether they are at home or out in public. I don't have as many social problems at home as I do at school or going out shopping simply because I am more comfortable at home. Not sure how to answer the other questions but I'm sure other people have more knowledge about it.