What’s Your Autistic Toddler Like Now? (Part 1)

by Tim on February 20, 2009

Many times over, our “What’s Your Autistic Toddler Like?” post is the most read article on this site. It’s also the post people most often cite as the reason why they write us and become regular readers of our blog. We are gratified by your response to our story about our son and hope all this has been helpful to you and your family.

In celebration of the 1st Anniversary of our blog, I decided to write a multi-part series, revisit that popular post, and update it for what the J-Man is doing now almost 9 months later. The original “What’s Your Autistic Toddler Like?” gave you a snapshot of what an autistic toddler might be like – or at least what ours was like – about three months before his 3rd birthday.

I emphasize ‘might be like’ because as the saying goes, “If you’ve met one autistic toddler, you’ve met one autistic toddler.” They are all wonderfully unique. Sure there are similarities, but their expression of themselves is wholly their own. That’s what’s so great about it.

First, we need a bit of preamble. I’ve learned that most people search for this kind of information because they are wondering whether their child is autistic or whether their autistic child is similar to others. So let me cover where we are and how I’m organizing this series of posts.

Our son was diagnosed with autism back in the spring of 2008. While not assigned a degree of severity (e.g., mild, high-functioning, moderate, severe) because he’s really too young for that, if you made me guess at this point, I’d say he’s probably around the ‘moderate’ range. He also has sensory processing disorder (SPD) – also known as sensory integration disorder – likely apraxia of speech, and motor planning challenges, among some other things. We’ll get into more details below.

In the previous post, we used headings that described these issues more in terms of how much of a problem we perceived they were at the time. My perspective has changed somewhat in that some things that are very much a part of his life don’t necessarily constitute a ‘problem’ – although they may cause significant challenges – while others do cause a great deal of struggle for him, us, or both. So I’ve changed the overall headings to be more about how present these things are in our day-to-day life, and then I’ll discuss what kinds of challenges they each represent.

I’ll note in parentheses which areas are more, less, or about the same level of challenge as nine months ago. We’ll also add some new things in because we’re more experienced now and can better refine and be more precise with our vocabulary.

Wherever you see “DSM-IV”, this means that attribute is part of the diagnostic criteria for autism spectrum disorders in the Diagnostic and Statistical Manual of Mental Disorders – Fourth Edition or DSM-IV. In medical terms, a specific combination of those DSM-IV criteria is what brings about a diagnosis of autism.

If you suspect your child has autism or are feeling at all unsure about it, I recommend reading the “Five Things You Can Do If You Think Your Child Has Autism” post, and in particular go through the M-CHAT worksheet. None of that is a replacement for an official diagnosis, but it will give you some tools on how to move forward.

Here in Part 1, we’ll cover some of the most significant challenges we’re working on here in the Flashlight house these days. In future installments, we’ll finish out that part of the list and move down from there.

Same obvious disclaimer as before: This isn’t a substitute for having your child evaluated. You are parents and you know your child better than anyone. If you suspect there might be some things going on, trust your intuition. We are not advising you on how to evaluate your child. Go get them evaluated by professionals with extensive experience with autism. Don’t just rely on some random people on the Internet – namely, people like us.

OK, here we go!

Characteristics That Are Significantly Present

Significant speech delay (DSM-IV; still significant but gaining ground) – Tests conducted around age 3 indicated he was 18-24 months behind typical speech development. That was roughly equivalent to him having a few sounds and occasionally using them for simple, one-word statements (or more often, word approximations) to identify a few objects and a small number of very basic needs.

At that level of speech, it’s hard to evaluate what he understood vs. what he could express – a very common dilemma among parents and evaluators trying to gauge where a child is. In hindsight, it’s very likely he understood far more than he could express verbally or with pictures and gestures, but often that’s not surprising either.

We think he’s gained some good ground in the last few months, clearly correlating with him being in Pre-K in the autism class. He’s added a bunch of new sounds, which makes communication clearer and less frustrating, and is able to initiate on his own a broader array of primarily one-word and sometimes two-word communication to tell us some of his needs, wants, and to identify a fair number of objects. He is also doing some 2-4 word phrases with prompting. The longest sentence we get without much prompting is “I want more _____” (e.g. I want more cup.)

We do a lot of sound-by-sound construction of words – he says a sound, we say it back, and he goes on to the next sound – which gets us up to a few basic sentences with prompting now. This is a big improvement overall, but speech is still one of his biggest challenges and likely will be for a long time. I’d guess he’s still 15-18 months behind what’s considered typically-developing. (For more on this sound-by-sound model, see “One Syllable At a Time” and “Many Ways to Say I Love You”.)

Difficulties finding alternative ways of communicating besides speech (DSM-IV; still significant but gaining ground) – He’s much more able to use pictures in combination with a good variety of basic words and word approximations to more clearly communicate many needs and wants. Instead of dragging you to what he wants all the time, he’s making some good eye contact and more regularly communicates with you as a person. His expressions, some gestures, and a slowly-growing repertoire of other nonverbal cues are helping clarify what he’s saying when his speech isn’t clear. This is a big improvement!

He is having to invent some creative ways of getting what he wants across to you, but he’s more socially engaging when he does, which is awesome. It still is difficult to know what he’s asking for on many occasions, and there probably are only 5 or 6 people (including us) who can with any consistency. He does not try to interact much with strangers, and he will only really interact with his peers in highly structured settings. What’s interesting, though, is that he and his classmates seem to find some mysterious ways of communicating with each other non-verbally.

Sensory problems (still an issue, but I’d say good progress here) – He still has significant sensory issues, but he’s also made some good strides in some areas. He’s way less resistant to doing things that involve his hands – getting somewhat messy, manipulating objects, etc. He has very few issues with clothing – he’ll even wear a hood when it’s cold out, though still no gloves – and thankfully has given up his resistance to normal shoes. Him allowing messy hands for things like art was a major coup for him!

However, loud noises seem to bother him more lately than in the past. He covers his ears and/or closes his eyes more than before, but his sound sensitivity is still within a manageable range. (e.g., we can still go to the store without much problem) He still seeks out a lot of hugs, deep pressure, bouncing, etc., but they don’t seem quite as essential for his well-being as they used to be. We’re, of course, happy to offer that to him, though! Hugs are always great!

He’s also better able to keep his sensory system organized or work out ways to get the help he needs at that moment. I’m particularly impressed that when we go places and he gets stressed that he knows how to seek help from us to regroup. He gives enough non-verbal cues that we can understand what he needs, though we may be the only two people who can read many of his cues.

He’s even going up and down stairs again now, which is a major achievement for him in overcoming some of the problems caused by issues with his balance and his fear of heights (when he’s not being held by someone). This makes life much easier for all of us as carrying him up and down a full flight of stairs was getting very hard!

We see sensory issues as being a continued challenge for him for a long time to come. And we expect that some of what isn’t as much of a sensory issue now may become more of a problem later, while other senses continue to improve. As with many things, our senses are a wonderfully complex system.

Seriously picky eater (still very significant, little improvement) – It feels like we’re going to be struggling with this forever. The range of foods that he’ll eat has changed little over the past few months. It’s pretty much toast, chicken nuggets, puffed veggies sticks, applesauce, tortilla chips, certain kinds of french fries, and decaf sweet iced tea. Last couple of weeks he’s started drinking a little bit of milk. That was like landing on the moon around here. We have to bring his own food to any restaurant we go to as he almost never eats anything off of our plates. This continues to be a source of frustration for all of us.

Lack of imaginary or pretend play (DSM-IV; still significant with not much improvement yet) – In highly structured settings – like set, routine activities with clear beginnings and endings – you can get him to do things like feed a doll, but it’s very rare (and that’s generous) that he’ll do this spontaneously. As far as things like having stuffed animals play with each other or running cars along the floor or whatever, I could maybe count on one hand the times I’ve seen him do this. As best we can tell, it doesn’t occur to him that dolls can ‘talk’ to each other or that cars can ‘race’ each other. I wish I had more to offer here, but we’re still at the very early stages of this one.

The issue of lack of ‘pretend play’ is a hard one for me to understand. For those of us with elaborate (or wild!) imaginations, we don’t really know how we do it; we just do it. It’s hard for me to imagine not being able to think the way I do, as I’m sure it is for someone with autism to understand why on earth I see the world the way I do. So, how do you teach imagination? Is it in this case more like teaching the concrete actions of ‘play scenarios’ that others create more spontaneously? Isn’t there something oddly counterintuitive about that concept?

At some intuitive level, I understand the point of teaching children this, but articulating that for me is difficult. Part of me wonders whether it’s that big of a deal that he has no interest in racing cars around the kitchen and crashing them. A significant part of me doesn’t much care about teaching him these things just because other kids are doing them. But I think a lot of me wonders whether maybe modeling pretend play will give him some building blocks that will help nurture parts of his creativity as he continues to grow. I don’t know. This is a big mystery to me.

Continue on with Part 2!

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