PDD-NOS, Asperger's? Your guess is as good as mine

[Lady Mayapple]

Hello everyone. I'm hoping that any of the ASD mommies or anyone else who is well-versed in the field might be able to help us shed light on some issues that have come up with my 4 year old son. We had him evaluated for autism over a year ago and he was not given a diagnosis. The reason we did the evaluation was because he was not speaking at all by the time he turned 3. We were told he had a speech delay due to a high palate, and that he would outgrow it in time, which did turn out to be the case, as he started talking about two or three months after the initial evaluation.

Initially we were relieved, but as time wore on it was clear that something still wasn't right. To illustrate some of the issues, here are some of the things he displays:

Poor gross motor coordination, still has trouble using a spoon and fork, is not able to ride a tricycle. We bought a little pedal car thinking this would be easier, but he cannot push it on his own, so we tie a rope and pull him along while he practices pedaling.

Intense shyness in social situations, intense fear of bugs-especially bees and spiders, extremely sensitive to sound, bright lights, scratchy tags on shirts, uneven socks, sensory-type stuff.

"Stimming" behaviors, mostly pacing around or going in circles around the room, hand waving, humming to himself (he hums for about 20 minutes before he falls asleep at night.)

Speech is clear but sentence organization and syntax are below where a child his age should be, also lacks ability to focus during conversation and does not engage in spontaneous conversation very much, and talking to him is often like pulling teeth. If I ask him what he did at school today, most of the time he'll say something like "I don't like school" or "I don't know", followed by "Stop talking, Mommy."

Why we recieved the initial "non" diagnosis is beyond me, but even my own layman's research of some ASD diagnoses don't seem to fit into my son's condition, and according to the DSM's description of PDD-NOS, he does not fit their description.

I just want the best for him and I don't want him to get left behind or not reach his full potential. He is a sweet and smart little boy who is very kind and playful with his siblings, and he idolizes his Grandma...but the rest of the world leaves him frustrated and confused.

So sorry for this long, long post. I so very much appreciate any insight you have to offer.

[sbgrace]

It's so hard when you don't have a name.

These are my best "could it be autism" links:
http://www.childbrain.com/pddassess.html (this one is an online assessment to see if further evaluation might be warranted)
http://www.bbbautism.com/diagnostics_psychobabble.htm (real life language of the current (not upcoming) diagnostic criteria for pdd-nos.


Take a look at them. But I agree that unless you're leaving out things (look above) he doesn't sound particularly spectrum in that description. The lack of conversation back and forth is the only flag I really see that seems significant and there are other causes of that.

So you look at stuff that does fit. Sensory issues for sure (they can exist outside of spectrum stuff) and you might look into dyspraxia (I think that's the word for the movement disorganization part of apraxia of speech). He sounds very sensitive and shy. At this point an OT evalaution (one who knows sensory issues particularly) is in order. He's got a lot of flags in that area. You mentioned the lack of spoon/fork use. How is his use of crayons and writing/drawing? Anything unusual about his speech (mixing up sounds in words, recall stuff?) Someone will likely mention NVLD. Worth looking at that.

I hope something just rings true for you. I know it's so hard when you're in the place you're in now. Once you have the what it's easier to help.

[Linda on the move]

I like the book Quirky Kids by Klass. Your child sounds quirky to me!

Evaluations are just snap shots in time. Dx's can change. When my DD was 3, they said she had "autism like behavoirs." She's 13 and her current dx is "PDD-NOS." She just had a new eval and her dx may change. Some things, like Aspergers, don't get dx'ed until kids are a little older because sooo many kids have the symptoms and just outgrow them.

Is your DS currently getting any therapy or help? Some of the speech stuff *could* be related to his extreme speech delay, but therapy can still help with things like conversation skills. Has he had any recent evaluations? How does he do at school? Have you talked to his teacher? Teachers can't dx, but the see children in a different context and can notice things, both positive and negative, that parents can't see.

His motor skills seem pretty off. Is he in a public preschool? Could you request an OT eval through the school?

[Lady Mayapple]

So sorry it took me so long to get back to you. Thank you so much for your replies. DS1 has recieved speech and sensory therapy through his preschool. His teachers tell me that he's always very focused on his work and is generally an easy going kid, which for the most part is true. The "stimming" only seems to happen when he is at home or somewhere he feels comfortable being himself. I wouldn't be surprised if he never did it at school. However, the preschool he attends has both "typical" and ASD kids in the same classes-the idea being that the typical children will help the autistic children integrate into public school when they are ready. DS was invited to be in the program (ironically as a typical peer) because my husband works at this school. We are very thankful for this opportunity. We would never be able to afford to send him to a school like this on our own.

Since many of the children in DS's class and other children in the school that his teachers interact with are profoundly autistic, DH and I have both wondered if that's the reason his teachers have not picked up on some of the subtle issues and behaviors he displays. I have a conference later this month with his teachers.

Since this post, I took him to his regular ped and got a referral to a developmental pediatrician. But before they do anything, I have a mountain of forms and things to complete, along with obtaining copies of his prior evaluations and a statement completed by his teachers.

Quirky would be a perfect word to describe DS1. He has very, umm..different? interests for a four year old. He was reading a book at school, and this book had a picture of a weathervane on a barn. Since then, he looks for them everywhere we go and knows every single house in our neighborhood that has one (and wants one for our house. Where the heck do you get a weathervane?) He also has a rather strong attachment to the first aid kit we keep in the car. He takes it everywhere, even to bed..You never know when you might need a bandaid I guess LOL! DS also likes watching me put on makeup and always asks if he can wear it. This got so bad I had to get him his own from the dollar store just to keep him out of mine. He tells me he wants to be "pretty like Mama".

I hope we get some answers soon. He is a really sweet kid and has a lot of potential. Sometimes I feel helpless, almost like I don't know how to parent him because I'm so confused as to what is going on. Feeling helpless is the worst feeling when you're a parent, at least for me.

[Lady Mayapple]

Some more info about the speech issues.. since he's standing next to me right now and said something that is characteristic of how he talks.

"Mommy can you give me something to draw?"

"I don't quite understand you"

"I need some paper so I can draw"

"Ohhh..okay."

"Mommy can you spell my name?"

"Yes (and I start to spell out his name)

"No no no on the paper!!!"

"Oh you want me to WRITE your name!"

"YES!"

And answering a previous question about holding pencils and crayons, he holds them properly and has for quite a while. This is yet another example of things that don't line up. Fork and spoon-not so steady. Pencils and crayons? Perfectly fine. ???

[kavamamakava]

My son was not diagnosed until he was 8 - which is typical of an Asperger's diagnosis. I had been taking him to screenings and specialists since he was 3 and they all seemed to think I was an over-concerned, over-protective mommy. If you're saying his speech delay was due to a physical mouth formation and not language processing disorder that could likely rule out PDD-NOS.

From what you describe, he could be on the spectrum or not. But it sounds like he would benefit from speech and language support and occupational therapy for his gross/fine motor skills and sensitivities.

There is a lot of OT you can do at home with him. I brush my son before bed and he sleeps with a heavy blanket. When he's on a good sensory diet I notice he has an easier time with everything. He also has a mini trampoline in his room.

I don't know how the schools work where you live, but they do screenings here for children starting at age 3 and it sounds like your son might qualify to work with a speech and language pathologist. They don't just work with spoken word, they also work on language processing and communication.

But, like you said with his speech developing just weeks after you were concerned, time does change things. My nephew was super quiet most of his life and his speech was delayed but lately he's become a total chatterbox. He turned 5 in December and will be entering school in the fall. He will only wear black and red and carries iron man figures in his pockets and is just a quirky fun little guy.

I would say that a diagnosis won't change who your son is so unless you feel a diagnosis will change the type of supports you can get, it's ok to wait until he's in Kindergarten when there are more supports built into schooling.

[RiverTam]

Having a developmental pediatrician assess your child is a good idea.

He/she can do a differential diagnosis which can rule out a lot of things.

My oldest has mixed expressive receptive language disorder (MERLD). A lot of his behaviors looked like ASD before he started speech therapy. After a year of speech therapy, the ASD-like behaviors are largely gone. He still has problems with language, but it's improving. I doubt that he'll ever be normal on a language test, but he's much more functional than he was.

His interests and behaviors are still quirky, though.

The MERLD diagnosis is frustrating. Most people understand something about ASD. They've at least heard of it. They know nothing about MERLD, so if it comes up I have to explain a lot. They also assume that DS will just go to speech therapy and be fine in a year or two.

Not really. He's going to need speech therapy at every level of school, because the language burdens increase in middle school, high school and college and present new challenges.

[sbgrace]

Lady Mayapple,
That conversation doesn't ring spectrum to me either. When you look at those links I posted does he have characteristics of spectrum stuff on them? If so which things? I think, unless there is more, I'd be looking beyond spectrum for him.

Is his muscle tone good? Did he miss any gross motor milestones (rolling, walking, jumping?)

I'd start with a good occupational therapy evaluation and revisit a speech evaluation too to see where he lines up for his age. That might give you a direction. I agree something sounds up (and sensory issues are certainly in this kid--look into that and I'm wondering if the fine motor/speech delay/lack of pedaling are all connected in there in either muscle tone or dyspraxia or both or something else.).

[kme]

Your son sounds a lot like mine. My son did not start talking till after age 3 and now at age 6 his communication is still somewhat impaired. He is quirky and has a slow processing speed.

He has been dx expressive/receptive language disorder and SPD with dyspraxia. Several evals have ruled out ASD, but he does have some of the symptoms. One doctor put it like this - if you go down an ASD checklist, he meets many of the criteria, but the QUALITY of his communication and interaction is different from a child on the spectrum. His deficits are coming from a different place.

It can be very frustrating to not know what is going on with your child.

[Lady Mayapple]

Sbgrace, thank you for the links. I did the checklist and he scored 105, or "moderate PDD-NOS". One thing I've noticed about these questionnaires is that they include things that anyone might exhibit. On the checklist (which is ENORMOUS and I still haven't finished it) from the specialist, there are things like "can your child do xyz" and I think to myself "Lots of people can't do xyz, heck I can't do that". At the same time, it is helpful to go through them. There were a few questions on there that I didn't even know the answer to. One of them was "Can your child hop on one foot?" I'd never even thought to ask my kid to do it, so I called him over and asked him to do it with me. Well, it turns out he cannot hop on one foot, but his little brother can.

The only spectrum-y thing DS shows is some stimming behaviors. They seem to show up when he is bored, tired, or nervous, and never any other time..so perhaps they are a sensory reaction of some kind. He will start pacing around in circles and twirling his hands and fingers in front of his face. He's tripped, run into the wall or the endtable and actually hurt himself doing this, so if I catch him pacing around I ask him to stop and find something else to do, even though I really hate to do that and it makes him VERY mad. The stimming by itself doesn't bother me, but he makes me so nervous when he does it!

He is a physically healthy child, at least I think he is. He's slightly taller for a child his age and a healthy weight (43lbs). One thing I have observed is that he tires easily. His little brother will want to race him or run around with him, and he can only do it for a few minutes before he comes to me and says "I'm too tired, mommy". Eating and sleeping habits are normal, and he's been fully potty trained since he was about 2.5 years old...As a baby he HATED wearing diapers, and by the time he was 18 months old we couldn't keep them on him anymore. DH and I joke that in this instance, DS's sensory issues worked in his favor.

After this weekend I should get some time to finish all of the paperwork and hopefully we'll start getting some answers soon. Thanks again, everyone.

[NightOwlwithowlet]

DS was originally diagnosed with PDD-NOS at four years old, but it was changed to ADHD with SPD and an expressive delay at almost six. DS made a HUGE amount of progress with therapy and bio med in that time, but I wonder how thin the line between severe ADHD and mild PDD.

My kid is a mystery. I wish I had a dollar for every person who has called him complex and has been unable to pin point his diagnosis. The longer they know him the harder it gets. So what is the point of my post?

DS had some red flags for ASD, but there was always a but. He banged his head as a toddler, but did it to get my attention and to get his own way. He only spoke 20 words until he was almost 2, but he pointed for joint attention and used nonverbal communication. He had echolia, but always used it in the correct context. I think with some people there is no cut and dry answers.

DH spoke late, three years old, had major social issues as a kid, and is still shy. But, hes clearly as an adult clearly doesn't have ASD. He's a well spoken, empathetic, kind and has remarkably thinking, especially considering how abusive his parents were. Yet, as a kid, he probably had many red flags for ASD.