just getting started down this road...

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Hi, I'm a mommy, and also a pediatric OT. I happen to have a 4 year old daughter who, it occurs to me, just might have Aspergers. I'm happy to fill you all in on why I think this, but the purpose of this particular post is to reach out to those of you who have been down this road before and ask for some specific advice.

I am setting up an appointment to talk with her preschool teachers, and I always get the "she's adorable!" and "she's great!" comments from them in passing, but I got that last year too...and when I probed further, I found out things WEREN'T great, the teachers last year were just avoiding the power struggles. Soooo, my question for you veterans is this: What are some very specific questions I can ask her teachers to elicit the information I will need in order to decide if I should take this further, i.e. pursuing a neurological opinion on what might be going on with her?

(the reason for all the ambiguity is that I think I may have been subconsciously "treating" her symptoms using my experience of OT and sensory integration all along, and if I had not, I'm pretty sure she'd be a complete nightmare right now...which is not to say that things are peachy, because truly they are not).

thanks in advance.

You may wish to post this in the parenting forum. They are more focused in such things.

I would ask a few questions about how she does with imaginative play. Does she invent narratives in her play or is she very concrete?

Does she prefer to play by herself?

Does she appear to be daydreaming or does she pay attention? Note that appearing to daydream isn't necessarily daydreaming.

I would also suggest that 'mother knows best'. Why do you need these teachers to confirm this? Have your daughter independently evaluated. As an OT, what makes you think she is on the spectrum?

You'll get more help in the parenting section.

This is my first time using this site, so thanks for the advice, I think I will check out the parenting forum as well. In response to your questions, here's an overview of our journey so far (through the eyes of a mommy who is also an Early Intervention OT): (oh geez I just re-read this and it's a novel--I don't blame you if you don't plow through it. believe it or not, this is the SHORT version.)

Sophie has never had any developmental delays--all her milestones were on-target or ahead, so there were no concerns there. Her biggest issue has always been self-regulation--i.e., she has never been able to soothe herself or maintain emotional or sensory equilibrium. In the womb, she was a maniac (we have video of my pregnant belly just grooving away). Her birth was very difficult and traumatic (long story but one which culminates in a forceps delivery, no outward signs of birth injury). The minute she was delivered, my doula said, "boy she's PO'd!". Holding her, attempting to nurse, nothing soothed her, until my husband finally stripped off his shirt and held her skin-to-skin. From that point on, she was an in-arms baby. She couldn't sleep longer than 20 minutes at a stretch, unless she was upright in my arms or attached to the boob. All her state transitions (sleep to awake, comfortable to hungry, warm to cold, wet to dry, etc) was met with an immediate screaming fit--no whimpering, no fussing or subtle baby signs of discomfort, just full-on and immediate screaming. I learned about babywearing, and proceeded to wear her for the next 2 1/2 years of her life--including throughout my entire second pregnancy. Deep pressure seemed to soothe her. Nothing that soothes typical babies worked for her, and if I heard one more person say, "Just use the swing...drive in the car...pacifier...let her cry it out..." (insert typical parenting strategy here), I was going to beat the well-meaning individual into submission. I was exhausted, overwhelmed, and accidentally the mother of a second baby, when I felt completely not equipped to parent the first.

By 14 months old, Sophie was walking and talking in her sleep. By 18 months old, she was having what seemed like night terrors- but they were lasting up to 45 minutes at a stretch, and also happened with whatever occasional nap I was able to squeeze out of her. The doctor finally diagnosed her with sleep/wake transition disorder and possible nocturnal epilepsy, but my husband decided against treating it with medication. We continued on with sensory strategies, routines, and a social story I wrote and illustrated with photographs of her going through her bedtime and sleep routine (thank you Shutterfly). She still wasn't sleeping longer than 3 hours at a stretch and only then with my husband co-sleeping with her (otherwise it was 1.5 hour chunks of sleep at a stretch).

And then she discovered trains. By 2 years old, she was fully obsessed with cars, trains, trucks, any form of transportation (dolls be darned) but trains were her one true love. She could zone out and play with her trains and tracks for HOURS. When she was overwhelmed or overstimulated, she sought (ahem, SEEKS...she's 4 1/2 and is still completely entranced by her trains) out her train set, became completely immersed to the point of not responding to anything around her, for at least 30 minutes until she was calm. I was relieved she finally had a coping strategy that worked for her. She's baffled by why her same-aged girlfriends are not also fascinated by all things train. She doesn't have a clue who the Princesses are, nor does she care to learn (honestly that's fine by me, but it sets her apart from her peers). She turns every activity into a train-related activity, and she has all the lingo down. When I pick her up at school, if she's in the gymnasium, she's almost guaranteed to be "chuffing" around the perimeter of the gym like a train. Luckily, she does seem to have friends, and the kids in her class seem to enjoy her, but I need to ask her teacher more about how flexible Sophie is with her play--does she follow other kids' leads and join in their games too?

I could go on and on and on and on, but basically in response to the question about how I've been "treating" her, here's what we've been doing:

Routines (my mother laughed when she saw the detailed outline I had put together of the "care and maintenance of Sophie" when I had my second baby, and my mother and mother-in-law came to town to help out...she thought I was being Type A, when really it was how we were getting through every day with our exceptionally difficult 18-month-old). Sensory strategies (I created a sensory diet, but did not think of it that way--it involved strategic use of movement activities, oral motor activities, and tactile play activities). Verbal strategies--redirection (never worked--Sophie could see right through every attempt at manipulation or distraction, even from a very early age), clearly explaining expectations, warning about upcoming activities and transitions, verbally reflecting back to her what I was observing ("when you put your fingers in your mouth, it usually means you are feeling nervous. what can we do to help you feel calm?" etc). I thought I was just parenting, but as she grew older and I still needed to do these things, and new behaviors would emerge (i.e. licking objects and her hands emerged at age 4), I started wondering if we were dealing with something more. Her behavior is rigid, we like to say she has an "overdeveloped sense of justice", and she can be very difficult to joke around with--you never know when she's going to take it too personally or seriously, and I find myself explaining EVERYTHING to her so that she understands the intention behind it.

She has come so far and is doing so well, but next year is Kindergarten and I'm nervous. We work so hard to keep her equilibrium, I'm not sure how it's going to go when new demands are placed on her. She currently goes to preschool 3 days each week, and we've been working up to that for 2 years. She doesn't seem to have any problems with attention or concentration, but she's very self-directed. She is very creative in her play, as long as it involves trains.

Why I think it has taken me so long to recognize this is because the kiddos that I work with have developmental delays in their communication and motor skills, whereas Sophie never would have qualified for EI. She doesn't stim, per se, though she does do odd postures with her body (I think they are sensory-seeking). She is very verbal and can be incredibly loving and social and creative. I have lots of experience with kids who have straightforward autism, but no experience with children with Aspergers, so I'm not sure what I'm looking for. Is she just a spirited and determined child with some sensory processing issues, or is it more than that? In the safe bubble of our home and with our friends who have known her her whole life (and who have had to help me out of more than a few situations in public where we've had nuclear meltdowns), Sophie functions well and has made friends. But I"m not at school with her, and I want to be sure I'm asking specific questions to figure out if the problems we have been working through at home are impacting her ability to function when she is away from us. All of my experience with children has been with atypically developing kids, and Sophie is my firstborn, so I'm honestly not sure to what extent what she does is "normal". At age 4 1/2, when should I be worried? What do I need to ask the teachers? I don't want her to slip through the cracks because she is so bright, social, and loving.

Thanks for the insights. The only reason I would pursue a diagnosis at this point is because it is counterproductive for her "quirks" (note the use of quotes) to be addressed in an exclusively behavioral manner. With Sophie, it has always been critical to address the INTENTION behind the actions FIRST, then the action itself (or meltdown, or whatever) later. I feel like she is at serious risk for developing poor self-esteem, which I would hate to happen to her because she's such a cool kid. She's already encountered insensitive treatment by well-meaning family members who feel like if they just tell her rationally why she's behaving IRRATIONALLY, it will make sense to her and eradicate the issue. I feel like I have to protect her at every turn from these well-meaning individuals, which then makes me feel like I have to defend my parenting (which I know is WORKING for her because I've seen the improvements, both in her behavior, coping skills, and overall level of happiness). I feel like a diagnosis would a) justify my parenting, and b) make it more likely for others to behave in a more understanding way towards my child, and ultimately c) give me more of a team in helping me to help her navigate situations that are overwhelming or confusing.