Evaluation needed?

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Good afternoon,

I am new to this forum. I came across it as I was googling, "signs/symptoms of Asperger's in toddlers". I am going to try to make this brief. I am a mom of a 2.5 year old boy. He was a very difficult infant, having GERD and milk protein problems. He literally cried every waking minute of the first 10 months of his life. He did outgrow the GERD and milk issues. As he has grown into a very outgoing toddler, I have always felt that things were a little off with him. While he is outgoing, social, and loving--he is also extremely stubborn. If he doesn't get exactly what he wants, when he wants it, no matter how minor, it is an explosion of emotions. Sometimes they are over quickly and other times they last for as long as 30 minutes. When he is having one of these tantrums, it is nearly impossble to calm him down. I describe him as being a belligerent drunk when he's in one of these "states". While I know behavior like this may not be that abnormal for his age, he has always had some degree of this type of behavior his whole life. It has just changed in different forms as he gets older. It's very difficult to take him anywhere. He does not listen to me or his dad. I've always mentioned how difficult he is to his pediatrician, who is wonderful btw. She gave me several ideas for disciplining and coping with him. We have been consistent with these ideas, but nothing has worked. My daughter had a well child visit a few days ago and she asked how my son is doing. I told her there is no change and pretty much broke down in the office, saying I just don't know how to help him anymore. She mentioned to me that he could have Asperger's based on things I have told her and what she has seen from him at his visits, which is bad behavior---ie, turning light on and off, won't stay in the room, won't sit down and then screaming and throwing himself on the floor because I won't let him do these things. Of course, I came right home and began googling (I know googling is bad) and feel that my son meets a lot of the signs/symptoms for aspergers. Some of those are: need for immediate gratification, does not like many kinds of food, tantrums easily over minor things, gets overwhelmed easily (but not all the time). There are a few others, but I can't say they are all the time. I'm well aware that a lot of these symptoms/behaviors are completely normal for a toddler, but I feel like he takes them all a little bit further than "normal." I'm on the fence for having him evaluated. From what I've read, early intervention is very helpful and I also feel that my husband and I need help with techniques to help him. Conventional techniques have not worked. Or am I completely crazy with lack of sleep from caring for a 2.5 year old and an infant and just need to stop googling? I know this might not be the most important post, but I would really appreciate any feedback. Thank you.

Hi. We had a lot of issues for about the first 10 months also with what we thought was silent reflux and colic. I wouldn't go so far to say that he cried 10 mo straight, but it sure felt like it. He also is lactose intolerant and had issues with milk protein solids as a little one.

As you know from the Oracle Google, there are many other signs of autism other than the behavioral ones. How are his language skills? This varies throughout the spectrum, but they can range from missing language milestones that are obvious to quirky things like repeating words and phrases either immediately upon hearing them, or pulling them out seemingly at random. Echolalia was one of the big ones that no one mentioned to us, and that I wish I had known about earlier. I didn't learn about it until I started lurking here. Does he stim (use repetitive motions like hand flapping) does he have poor responses to too much or too little stimuli? What else do you see aside from behavior? I would be careful about Google, because there really is a lot of scary misinformation out there, but not reject research entirely. Sometimes even the best meaning of experts don't know everything. Pediatricians know bits and pieces but are not good sources of the real detailed stuff and can still harbor misconceptions such as thinking all autistic children are averse to snuggling and that kind of thing.

Given that your child is under three, if you are in the U.S, your county's zero-three program will be the best place to go for free evaluation. After three, it is done by your local school district. It is scary to contemplate, but it sounds like you could really use the guidance and should know what you are dealing with. You can always opt out of anything that makes you uncomfortable, but I think it might be helpful to you based on what you have typed so far and what others have posted. We did not get an eval until pre-k and I don't know if things would have been better had we been more aggressive.

Thank you for responding ASDMommyASDKid. It's nice to know I'm being heard and helps to discuss with another Mommy. Language skills....I would say they are average. Some of his friends that are around the same age, speak better and some not as well. He speaks in sentences, though they are 3-5 word sentences. He does have a problem with communicating when he is upset. I ask him what's wrong and he stays silent or just looks at me confused. I mentioned this to his pedi and she said that is very normal for his age. The quirky things, like repeating words/phrases IMMEDIATELY does happen though. He might only repeat the word/phrase once or may say it a few times, but he might not do this at all in a single day. I guess I had summed this up to him just learning how to talk??? I have read about echolalia, but it sounded like it was more extreme than what my son exhibits??? I don't think he has any stimming. He definitely has trouble sitting still, but he is a 2.5 year old boy....or is that all it really is? This is so frustrating! I have noticed he sucks on his hands a lot, which just started in the last month. Could this be stimming?
I just want to help him in anyway that I can. I will definitely check out the 0-3 program. I actually get mail about it all the time. It seems to be proactive.
Thanks again for your response and any other input would be great!

Oh one more thing....he gets upset quickly when he can't figure something out or something doesn't work right. We have been working with him to ask for help when he feels this way which seems to be helping a bit. Again, this could also be the age?

One of the difficulties at getting a diagnosis at this age is the variance between typical and non-typical at this age is hard to put your finger on b/c it really does overlap with typical infant/toddler behavior. We had normal language development in terms of words and sentences, but atypical in the sense that echolalia was used in lieu of original speech. This is not unusual in ASD language development. Pragmatic issues became more apparent later with more obvious pragmatic issues like proper pronoun usage that extended past the usual period of confusion, idiosyncratic word usage (words out of context) and the like. For many of the higher functioning kids, there may not be a diagnosis until 7, 8, or 9 when social skill gaps are more apparent. So, even if you pass the screens now, unfortunately you have to stay on top of it, if you still suspect ASD as a possibility. Also there are other things that I am not as informed about that could cause behavioral issues that are not ASD. Or initial ped did not think it was autism b/c our son was snuggly, although we had other more steroetypical things like no eye contact.

Sucking fingers is a prime example of a stim that typical kids do to. Other stims are obsessive interest in spinning fans, odd hand gestures, etc, but there are so many.

We had (and still do) have a lot of issues with frustration tolerance, and that was a concern with us. When they meltdown, their communication skills degrade due to all the neuron firing action going on in their brains. I wish I could give you a magic fix, but honestly it takes time. Some of it improves when general communication improves, b/c some of the frustration is due to inability to communicate both expressively and receptively. My son did do the stereotypical lining up blocks things and making tall towers and when they were not lined up perfectly he would get very upset. Distinguishing big deals from little deals is ongoing.

Thanks for the good and interesting info. I am a little confused by what you mean when you say, " echolalia was used in lieu of original speech." Example?

My son has a lot of splinter skills: Things he is just unbelievably good at and things that he really struggles with. One of his aptitudes is creating a mental database of sentences, words and phrases that others have said. It was very extensive. So if he had to answer a question or tell us something, it was easier for him to pluck one of those sentences out of his database and use it, rather than come up with an actual sentence of his own. There was a point in time when his original speech was as short as he could make it. He had gotten into a habit of even saying "y" and "n" for "yes" and "no." At the same time, I am a SAHM, so most of his database consists of my sentences. My speech tends to be verbose and somewhat pedantic. So, that was when I started figuring out what he was doing. I started recognizing my own words.

As an example, one day the satellite went out during a storm, during one of his TV programs that was part of his routine. He generally would have a pretty big meltdown when this happened, b/c it was a major disruption to his routine, though he wasn't even paying rapt attention to the show, He used it as a time marker. Anyway, this one day it happened, he remained calm and regurgitated word for word whatever pedantic scientific explanation I had given him the prior time this happened. So he understood what I said, evidently to at least some degree (He was calm--and not upset, is why I assumed this) but he was not capable of stating it in his own words.

Sometimes his database would not have a sentence that fit, so he would used something with the main word he needed in it. It is something like querying a database with a keyword. So sometimes what he said was the exact opposite of what he meant. I got to a point where I could figure that out, and would ask him if that was what he meant, and he would get all flustered and confused, not seeming to understand why he gave the opposite of what he meant and then he'd answer correctly in the most succinct way possible. Sometimes he'd be upset, and sometimes he'd just be confused.

Right now he is a little chatterbox and the hard part is getting him to know when not to talk, and how to control talking impulses. So the phase was temporary (though fairly long) but evidently important to his language development. I have heard others say similar things, so I think it is pretty common. i do not know to what extent and to what degree, though.

Thanks for the explanation.

this is exactly how my son is now. He can talk and talk endlessly, and he has no idea when to stop talking. He was a quieter toddler, not that he didn't talk, but he didn't have much to say about things. In recent years, he has taken to non stop talking marathons, where he has no idea that the other person is so lost cause he keeps rambling on!! ! We are currently working on this.

Yes, seek an evaluation. Start with your county's Early Intervention. The best eval would be by a team that includes an occupational therapist, speech therapist, and psychologist. Otherwise, look for someone trained to perform the ADOS (autism diagnosis observation schedule). Unfortunately, if he doesn't have a language delay, the social delays may not be apparent until he is 4 or 5. (My son was evaluated by EI at 31 months, but didn't receive a dx until we retested him at age 5.)

Here's a few books that I found helpful (it was hard to find good advice that worked for my son in the preschool years, since the typical parenting techniques simply didn't work):

Asperger Syndrome and Young Children: Building Skills for the Real World by Teresa Bolick

The Out-of-Sync Child: Recognizing and Coping with Sensory Processing Disorder by Carol Stock Kranowitz

Raising Your Spirited Child Workbook by Mary Sheedy Kurcinko (get the "Workbook" version)

Unfortunately, for a long time (years) you basically have to figure out the triggers and accommodate, accommodate, accommodate. A good rule of thumb is to have expectations of self-control that match a child 2/3 of his current age. (So a 3 yo acts like a 2 yo, and a 6 yo acts like a 4 yo.)

Also, try different things to see what shortens or prolongs the meltdown. For my son, any sort of touch or verbal interaction made things worse. It was best to sit nearby to make sure he was safe but otherwise leave him alone.

It's extremely difficult to diagnose Asperger's in a kid that young. The county Early Start programs might be a good place; if you can find one, a developmental pediatrician or pediatric neuropsychologist would also be a good place to try.

I was a kid with Asperger's. Nobody, obviously, could have diagnosed anything back in 1984. All that there was to diagnose me with was high intelligence and spoiled brat syndrome. People did what they could; by and large I think they did a good job-- I had some rudimentary form of social skills training from the school counsellor, moreover than that, though there was no diagnosis for either of us to have, I had a very functional ASD father who knew I was "like him" who had the level-headedness to teach me the way he learned.

From an ASD former kid (who still has meltdowns, and always will), there's a couple pieces of advice I'd like to toss out. Take them or leave them, 'cause I'm only human.

1) Don't lower the standards, or stop expecting him to learn to function. Add a liberal amount of extra patience. Understand that it will take more repetitions, over a longer period of time. Drop the stuff that is silly-- he's not going to be Mister Popular, he's not going to do typical kid stuff on a typical kid schedule-- "Is this important, or is it just silly?" is probably a good litmus test. But don't lower your expectations. God only knows where I'd be today if my folks had been given a "disabled" label, told I couldn't do it and never would, back in the day-- I don't think it would be anywhere good.

2) On the subject of meltdowns: DO NOT try to "fix it." The idea of not comforting a screaming, raging, sobbing, howling, furious child is completely counterintuitive, but I really think it works. Even at 35, all I can do with a meltdown is remove it from public sight, keep it the hell away from my kids, and then let it run it's course. It's like tripping the excessive pressure vent on a pressure cooker-- all that steam has to go SOMEWHERE. Any attempt anyone makes to try to comfort me, or calm me down, or otherwise solve the problem only makes matters worse (something I really wish my husband would allow himself to learn-- we've had a lot of days-long epic fights that could have been avoided if he would have just left me alone to smoke a couple cigarettes, write in my journal in jagged all-caps, or go down the yard and kick a tree).

You can talk about it after the meltdown. As he gets older, you'll be able to discuss what happened and how it might be dealt with next time-- after the storm is over and the sun is starting to come out. But well-meaning adults trying to stem a meltdown once it's already started, to an ASD kid-- it's like whacking an angry badger with a stick. It's going to add to the meltdown, not stop it.

If he's safe where he is, leave him there. If you're in a public place, pick him up and haul him to the car-- carry a book so you have something to do while he's doing what he has to. If you're home and can't leave him where he's at (friends over, other siblings playing, whatever), pick him up and drop him in his room. DON'T SAY OR DO ANYTHING ELSE, unless it's "I love you" or "I think you need some space right now." No judgment, no shame (these things are poison to anyone's learning, but doubly so to an alphabet soup kid), no attempts to explain or reason, no nothing.

Love your kid. Have a life with your kid. DO NOT attempt to make your family's life revolve around his disability-- that's not fair to you, or the rest of the family, OR HIM. It's tempting, it even feels right, you'll even be able to find lots of sympathetic professionals who will tell you it's right-- but it isn't. It will limit his horizons, and make everyone else resentful (no matter how much you try to suppress it), and an Asperger kid is definitely with-it enough to sense that resentment even if he can't verbalize it or do anything about it. It's a very understandable course to follow-- but it's counterproductive in the long run. And just like any kid, you're definitely in this for the long haul-- the haul with an Asperger's kid just might be a little longer.

Wow OP, your post reminded me exactly of what the first year of my son was like (and thereafter). My coworker said to a friend she had never seen an unhappier first time-mommy than I was. We figured DS had reflux and went on reflux meds, and then he was teething. It was always something, and he was always crying. He only stopped when I carried him in the Bjorn while walking up and down the stairs repeatedly, or strolling him over the bumpy cobblestones. He always needed the movement otherwise he could not settle down. His tantrums were epic. Even as a toddler, 30 minutes was the average, sometimes 45-60 min or more to pull him out of the mood. In a public place trying ot put him in the stroller instead of rolling all over the ground and getting trampled on by the crowds--he wouldn't let me hold him, he would kick and scream, and I'd have to literally drag him to the stroller and then he'd headbutt me and split my lip open while I tried to hold him because he wouldn't get in the stroller, while I'd get stared by everyone at as he arched and flailed about. Those were not good times I feel for you. Get him evaluated. Asap. There's no harm in it, and the worst that can happen is that he will get some help. Where's the downside in that?

Thank you all for input. My county's 0-3 program is coming to assess next week and our pediatrician is referring him to a behavioral pediatric therapist at my request.