Evaluating a Toddler

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Sorry in advance that this is long.

Little kids are strange. However, I've long suspected that mine, Monkey, is stranger than normal. Lacking a language delay or something else obvious, how do you *really* tell the difference? I have Aspergers, so I don't notice some things and just accept others, so I just didn't think I needed to do anything in particular, I'd just see how he evolved. However, it has been suggested by a friend that I might want to get him evaluated now, while we could qualify for early intervention. Monkey is ~2.5 years old. How do I know if my kid is actually odder than average? I don't want to be accused of diagnosis shopping to "make him like me". How do I make the case to his pediatrician (and later evaluators)? Any suggestions from y'all who have been there/done that?

I think he exhibits:
- ritualized behavior
- pedantic and mimicked speech
- mimicked/stereotyped emotions
- stimming
- lack of empathy
- poor visual-spacial relationships (walks into walls)
- poor fine motor skills relative to peers (holds crayon in fist, peers are using more pencil-type grasp)

Here's how I would describe him:
- Busy, active, but not hyperactive.
- Healthy, excepting mild asthma (thanks RSV!) Essentially toilet-trained.
- Amazing meltdowns since birth (surprised the lactation consultant at 1 day old - couldn't breastfeed because of meltdowns)
- Head banging from the time he could move his head (usually into my shoulder or the sofa), 15-30 mins is typical. Generally when tired.
- Extremely high pain threshold (takes a hard hit and keeps going, major bruise appears later)
- Complains of bright lights and loud noises, including talking too loud. Has had sunglasses and shades since infancy.
- Advanced speech, but pedantic. Is a complete tattle-tale about rule breaking, himself or others.
- Morning, evening, and activity rituals that MUST be followed. (Must say goodbye to fishtank at daycare or meltdown.)
- Clear mimicry of phrases/associations, no nuance, no deviation (like cake = sing happy birthday)
- Has "fake" behaviours, like a forced laugh when he thinks he is supposed to laugh (as opposed to tickle laugh, which is totally different)
- Hit and bit without understanding that it hurt others (despite crying child). Finally stopped by explaining that it was illegal and therefore not permissible.
- Abnormal social development: Went from zero differentiation between family and strangers to everyone but mommy is a stranger in a matter of a week (Dad lives at home and is a regular caregiver). Has 1 friend, who he has known since pre-birth (literally).
- Generally well-behaved in school, follows direction, happy to clean up, understands the rules, with one exception.
- Single-focused and undistractable from infancy. When he is playing with toy X, he will play with toy X to the exclusion of all others for 30+ minutes.
- Has fav. toy, a rigid vacuum cleaner hose, which is his all-purpose can do anything toy. It is a trumpet, a spyglass, a sword (complete with "fwong, fwong" noise), a bubble-blower, a poker, an "I lost my toy under the sofa let me get it"-tool, and heaven knows what else.

I manage the rough spots by doing the following:
- Everything has a countdown and steps so that he knows the plan. For unusual things, I'll start pre-prep days in advance.
- Let headbanging happen unless it is against hard furniture. Then I redirect to soft, slowly (usually me).
- Provide sunglasses, shades as needed. Working on ear plugs.
- When in "unsolvable" meltdown, hold in lap, facing out, count up and rock. (Trying to teach alt. stim)
- After meltdown, curl up with quilt (heavy) to further relax.
- Play in park with him, so he can run and jump and slide to his content.
- Slowly re-teaching him that Daddy is safe too. (Let Daddy handle the occasional meltdown.)

I guess the question, for me, on early intervention is for "what." What areas are the most concern to you?

The ones I can see from your list:

Motor skills
Sensory issues

Both leading to the same recommendation: OT.

I would say social skills, but personally I think that trying to force that onto him is more stress than it's worth at this point.

ANYWAY, knowing going in to a meeting what you want to accomplish from the meeting helps establish a game plan. Example: You are concerned that motor skills won't catch up quickly enough for your child to succeed in K, and you are worried that the sensory issues, unmitigated, will also interfere with success in elementary school. That while you are doing great accommodating these for now, as someone with AS yourself, you can see a lot of issues coming into play once school is started. Since your child has trouble with transitions and needs consistency, you feel that starting work on these areas now, in a slow and gentle manner, will go easier for everyone.

You may or may not need an evaluation and diagnosis to get the help you want. If a diagnosis isn't needed, great, just take the help and worry about labels later, IMHO. If it turns out you will need one, THEN look further into what it will take to get one.

PS -

As a parent to one AS child and one NT child, I would say that your child probably is AS.

It sounds like an evaluation would be a good idea. I don't know what the process is where you are, but if you basically take what you wrote here, and just edit out the part addressed to us, you've got what you need to say to the pediatrician! Call (if your pediatrician can be reached by phone), explain your concern, and maybe email that portion of your post. Then go from there. It's great that you understand your son well enough not to find him too odd! Acceptance is a huge plus, and you will do him a big favor by being a safe place of understanding. If you can also be a translator for a while, until he can learn to cope and translate for himself, that will also be a benefit to him.

It looks to me like you will need more than OT; PT is likely also going to be an issue, and also speech & language (for pragmatics). While the diagnosis may not be important yet, depending on your location, you might get an itinerate teacher to observe what is going on in nursery school and provide input to the teachers to help with any issues that arise there. That can be extremely helpful, both in dealing with issues that come up, and in seeing things before they come up. Also, an extra pair of eyes, focussed on your son, will see things differently from how his regular teacher(s) do. Having services in place before school starts (I know, right now that seems like forever away, but time passes very quickly) is important - when kids receive early intervention services, they transition into school with an IEP, and things are much smoother than when they have to start from scratch.

Good luck!

I would seek a professional evaluation. It will provide you with answers, and options for helping him with these areas of concern. It may or may not be an autism spectrum disorder, but in any event it seems you have some valid concerns which can probably be addressed well by the right people. Best of luck.

Your pediatrician should be able to refer you to the local Early Childhood Development center which should offer you a free evaluation. If the find he is behind in an area they might recommend some type of occupational therapy or something. When he turns 3 he will be under the care of the school district and they will provide preschool or therapies as needed.

Thanks everyone. The idea that if I start him with a dx (or services) now makes it easier in to navigate the system later makes sense. I've sent a short email to his pediatrician to kick that off.

C is already enrolled in private preschool (same great place where he has daycare now) and I had planned to keep him there for kindergarten. My hope was to either move to a town with a decent school system by first grade (that will let him join the proper year) or I would homeschool him. The town where we live has a really terrible school system plus I have safety concerns.

So how does the school system have involvement at 3? I know they are supposed to attend planning meetings but I don't understand why. He isn't eligible for school in this district until he is essentially 7 (late birthday). What do they do in the intervening years? Why wouldn't some therapy just be an insurance thing, like it is for adults? Sorry this is idiotic, I can't seem to find explanatory information for how the system works.

There are two kinds of early intervention services: the first is birth through age three; the second is age three through age five (or the age when the child is eligible to enter kindergarten). Early intervention for age three through age five is sometimes through the school district, and sometimes through the county - it depends on the state system. Regardless of what the system is, when your child is found eligible for early intervention services, those services are provided outside of your insurance, and at no cost to you. Your school system may be able to help you with an explanation of how the system works, or you may be able to find out more information through a local or state special education network. There may be a disability law project or an education law project in the state that can clarify things for you - it just varies so much by state, that without knowing your state, it is hard for anyone to give you specific information. The information you will need, though, is not specific to children on the spectrum, so see if you can find a special education resource anywhere in your state, and go from there for details in your state.

See how the evaluation goes first. I had the same thoughts, but they picked up on it very quickly. I didn't say one word about my suspicions because I wanted an unbiased opinion. They noted more things than I did!