This is Part 2 of our series “What’s Your Autistic Toddler Like Now?”, a journey through what’s happening these days in the life of our autistic 3 1/2-year-old son and sequel to our very popular original article, “What’s Your Autistic Toddler Like?”.
Note: Wherever you see “DSM-IV” below, 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.
Same obvious disclaimer as before: 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.
If you haven’t already, go back and read Part 1. If you have, let’s continue on!
Characteristics That Are Significantly Present (continued)
Difficulty with social awareness (a bit better but a lot to work on) – I don’t know whether this has an official meaning, but I think of social awareness in a very broad sense as being aware that there are people around you and that they can be engaged with at some interpersonal level. For some time, we referred to other kids in the room as ‘part of the furniture’ as our son didn’t interact with them much differently than any other object in the room.
School has helped him in this regard in that he has regular time every school day with the same children and is involved in activities with them on an ongoing basis. You still get the sense that he’d usually be content without them, but often the emotions of an autistic toddler are inscrutable.
He does enjoy watching other kids do funny things, but watching rather than playing with children is one of those possible signs of autism, and this is a fairly accurate description of where he is right now.
That said, it is nice to see that he’s aware that other people have names, and he can use a name to refer to a person, though usually now that’s only with some prompting.
Continue on with Part 3!Challenges with joint attention (DSM-IV; noticeable improvement, still a lot to work on) – ‘Joint attention’ essentially is when your child finds some activity, object, etc. interesting and brings it to your attention for the purpose of sharing in the activity with you. Many children with autism get into an activity or object and aren’t particularly inclined to share in that experience with anyone. They may focus on an object like a favored toy to the exclusion of anyone around them.
While our son struggles with being led to share in activities with his peers, he’s getting much better about bringing us into activities that both interest him and have some clear component in which we can participate, like reading a book or talking about his flash cards. If the activities are more solo-oriented – like working his puzzles – then he’s not as much into sharing them with us.
There’s obviously an important social component here and one we’ll be working on for a long time to help him with. This isn’t to say that you should force your way into every activity your child engages in, but if your child mostly plays solo, I personally think it’s a good idea to nudge your way into more and more activities. Example – when our son was really into block-stacking, I’d get a handful and stack along side him. This sometimes ticked him off – he’d just knock my tower down or take my blocks and go back to what he was doing – but this is one of those things that often progresses slowly but steadily toward good joint attention.
Whatever we did or are doing, we’ve seen nice growth here.
Exceptional skills in certain areas (don’t think we included this last time, but a clear ‘no, duh’ here) – I know that assuming kids have so-called ‘savant-like’ skills is not really a helpful stereotype for autistic children. I’ve heard some parents talk about family members wanting to brag on their child and end up trying to show off their child’s skills to friends like they were parlor tricks or something.
That nonsense aside, it’s not unusual for autistic children to be highly proficient in areas that complement their interests and the way they naturally process information. For the J-Man, letters, numbers, colors, and a great memory for songs and books have been his real strengths. From what I gather from others, these are common areas in which other autistic children often show advanced skills.
Our son tends to respond well to concrete concepts, and it’s hard to get more concrete than a black letter on a white page. He can remember songs and books we haven’t talked about in months. The big one was that he just up and one day demonstrated that he could read, though we’ve suspected that he’s had some affinity for words for some time given the way he looks at books. He just has had that knowing look when he reads by himself.
For much of his life, he’s also been holding books ‘correctly’ (print facing you in the way you’d read it) and turning anything with words on it (puzzle pieces, cards, etc.) so the words are oriented correctly. Overall, his skills in these areas put him well ahead of age level. Next on our list is to work on spelling. One thing to keep in mind here, though, is that with limited speech, we have to be a little more inventive in order to more accurately understand his reading level.
We’ve been seeking out ways to leverage his skills here for other purposes like communication. His picture board items now all include the corresponding words, and we’ve been more and more trying to pair up words with pictures in other activities.
Responsiveness to order in learning (structure is very important, perhaps even more so now than before) – A highly structured learning environment has made a huge difference for him, as it does with most all the autistic children I know. Our son is in a dedicated, Pre-K autism classroom, which is so elaborately organized that it would blow your mind if you’ve never been in such a classroom before. His teachers are six kinds of brilliant, creative, and in tune with his learning style, which is something we value beyond measure.
We’ve known for a long time that order and structure are very important when we need him to be in ‘learning mode’, but this classroom takes it to a new level, and he’s really thriving in that environment. He has adjusted masterfully to 6 1/2 hours of Pre-K, 5 days per week, a level of intense work we really didn’t think he could manage back when he started school six months ago. We’re on a year-around calendar (roughly 9 weeks on, 3 weeks off, all year around) and, not surprisingly, he has a hard time transitioning from school being in session to vacation time, and vice-versa. The loss of that structure is very hard on him.
Through this highly structured classroom – on top of things he originally picked up at home like letters, words, numbers, and colors – he’s learned a variety of new skills lately such as sorting big and little, matching some words with their pictures, identifying how many objects are on a flash card (up to 3), working more complex puzzles, etc.
To say structured learning with great teachers has been a success is a huge understatement. The improvements are wonderful, and we are so proud of him!
Difficulties with motor planning (still hard for him) – He still has a hard time sequencing physical movements when it’s something that involves multiple steps, like “clap your hands, stomp your feet, and shout ‘Hooray!’” (for the latter, often more non-verbal like ‘hold your arms up’) He responds better if you give him specific directions, one step at a time.
For example – this is something I’ve noticed in the last few days – “Let’s go put your coat on” or “Let’s go brush your teeth” are too vague. But “go to the couch and then we’ll put your coat on” works much better as most of the time he dutifully goes over to the couch. It may sound like a subtle difference, but there’s a huge difference in how our kids process those two statements. Giving clear directions helps him, but even then, many things are still hard for him to sequence.
Sequencing that’s part of a ritual or something done regularly is much easier. Here’s an example of the funny lengths we will go to in order to teach social gestures like waving and such. He finally learned how to do ‘high fives’, which was a huge coup as intentional hand gestures were just not his thing. Then we evolved it to high five then a fist bump. We’re now up to high five to a fist bump to exploding the bomb. If none of that makes sense, just Google it. 🙂 I’m just tickled he can put three actions with his hands together into one sequence!
Rarely points at what he wants (hasn’t changed much, but overall is less of a concern) – I say ‘less of a concern’ because he communicates in other ways, but he’s still not a big pointer. The gestures he uses are somewhat more precise than before, and this helps. The main things he points at are his picture boards (for food and activities mostly) to ask for something. He does reach for things he wants, but more with his whole hand. If he feels like he’s not getting his point across, he’ll lead you by the hand over to what he wants. That’s been a common technique for him for a long time.
I’m honestly not that concerned about this, though. He’s better at getting his point across, and we push him to communicate things verbally even if we already know what he wants. I think we’re making good progress on communication even without the pointing.
Hand/arm flapping, repetitive behaviors (DSM-IV; still very much present, but less of a concern to us) – He flaps (stims) at least as much if not more than before, but I don’t see this as much worth worrying about at the moment. When he’s clearly so overstimulated that he’s unable to communicate, focus, or do much of anything, we try calming interventions to help him regroup. His stimming is a good indication of where he is sensorially and emotionally, and we can respond accordingly. In that way, it’s actually helpful. His teacher and I joke that he is working hard to perfect the ‘full-body stim’ as he has refined this arm flapping/jumping/laughing/spinning/dancing maneuver that’s something to see.
Repetitive behaviors in the sense of ritual movements that serve no ‘functional’ purpose (like having to enter a room and walk in a certain pattern three times before you will allow yourself to sit in the chair) isn’t really something he does much. There are a few quirky things – like he often has to clear the couch of everything on it (pillows, books, etc.) before he’ll sit on it – but these really are just quirky and don’t really have much impact on our lives. (except when he’s pulling stuff off a couch at someone else’s house and making a mess!)
“Learning problems” – I used this terminology before but am now punting this as a category. I only bring it up here again to emphasize a point. I think the term ‘learning problems’ is no longer appropriate to us, particularly because it’s too broad and imprecise and because I think it diminishes the value his unique learning style has.
I don’t see his learning style as a ‘problem’ like I did before but rather that he has a unique process for learning that presents both many challenges and many opportunities. Is it different from how most other kids process information? Likely so. But here’s an important formula to burn into your consciousness – different does not equal bad or deficient. As a t-shirt I have says, “Statistically speaking, you’re not normal either.”
This is an example of how we should choose our vocabulary carefully. Many ‘problems’ aren’t negatives but really combinations of challenges and opportunities. The more we treat them as such, the better off we’ll all be.
Social detachment / Not forming age-appropriate relationships with peers (DSM-IV; again, not a fan of this vocabulary, but social engagement remains hard) – This area is one of those that people have a variety of opinions about. At one level, a lot of people – especially introverts like us – don’t care for large doses of social interaction, regardless of the context. On top of that, who actually determines what is ‘appropriate’ anyway?
Yet humans are fundamentally social creatures, and it is important that we learn strategies on how to handle a variety of social situations so we can navigate the school and work demands that are a big part of our lives. For children with autism, this takes a lot of work, a lot of modeling, and a lot of practice.
In his classroom, the J-Man and his classmates have structured social interactions with each other to help them learn some of those basic skills. But, of course, there are also plenty of other opportunities for interacting with each other on their own spontaneously. I think ‘appropriate’ – at least as I understand it at this point in the process – is something like ‘when your child plays with other children as people sharing in an activity rather than just interacting with them in the same way they would another object in their environment.’ Within that definition, he’s got a long way to go, but he has started coming away from the wall and the other toys and interacting with his classmates in small, yet growing and significant, ways.
Poor muscle tone in his trunk/core muscles (still noticeable) – This is one of those odd things that I never have figured out. I imagine to some degree that’s because I haven’t done much reading about it. But a lot of autistic kids have weakness in their ‘core’ muscles, the muscles that support your trunk and the rest of the central core of your body that provides you with stability, ease of movement, etc.
I know I have Abs of Molasses, and it looks like the J-Man has been gifted with even worse issues there. In the grand scheme of things, this doesn’t strike me as high on the concern list, but it can affect coordination, movement, balance, etc. and can making feeling comfortable in your own body difficult – a not so small problem when you have sensory issues to begin with.
Working on strengthening these muscles is one of the OT things we work on. Exercise balls work great for kids too!
Flight risk – (less likely a problem now, but…) – Right now for us, this is really more about him not having the kind of awareness of his environment needed to be alert to where he is and the potential safety hazards around him. I feel like he’s much less likely to run away from us now (he used to bolt off down the concourse at the mall and never look back, forward, or sideways…) but his awareness of any potential dangers remains very low.
We are applying for a handicapped placard for our car so if he’s having a particularly off day and the alternative is to have to park way far away from the store, we’d use it to park close so we don’t run the risk of him getting loose on us in a parking lot. I can still control him pretty well just carrying him, but he’s getting heavy and stronger by the day, and with our second child on the way, this is going to get more challenging before we hopefully someday don’t have to worry as much about it.
Next time, we’ll move on to areas that are still present, but to a lesser degree than what we discussed today. See you then!