learning to dance again (fikgirl) wrote in asd_families,
learning to dance again

Questions About My Daughter

Hello, I'm new here, and am looking for advice and suggestions.

My daughter, 6 years old (The Girl as I refer to her in LJ posts) has not been diagnosed with anything, but her teacher thinks there might be some flags that hint at high functioning autism/aspergers or something in the autism spectrum.

Here's my story:

The Girl, can be the sweetest, kindest, most loving and affectionate child around. She has a great imagination and can go off in the corner, or her bedroom and play the most wonderful made up games. She dances around the house and sings. She loves making things -- arts and crafts and the like. The Girl is good at math and likes it (she inherited that from some distant corner of the gene pool because that's a gift DH and I don't have).

The Girl will crawl into my lap and smother me with hugs and kisses, or will just ask to sit on the couch and "snuggle." She will sometimes creep into our bed in the middle of the night and throw and arm around my neck, or DH's. And sometimes, those moments few and far between and every blue moon, she will reach out and start tugging/rubbing my earlobe, a left over comfort from her baby/nursing days.

At the other end of the spectrum, she is an extreme perfectionist. She wants to be perfect at everything, even if it's something she has never done before. She's 50/50 with games, but physical activities are the challenge. If she can't do it "right" the first time, she loses it. She says that she's horrible at it, that she'll never be able to do it, and gets deeply frustrated with herself. No amount of cajoling and reminding her that she needs to practice works out the frustration; she can't do it, so she quits. This, after the whining and fussing and tears have started.

Of course, the biggest problem is that she does not have a "normalized" reaction to negative stimulus. When The Girl does not get the response she wants or things are not going her way, she loses control. I don't mean that she cries, I mean that she will often devolve into a screaming, hysterical two-year-old toddleresque temper tantrum complete with screaming, flailing arms and legs, stomping feet (if she's not on the floor already) and throwing things. In school she will kick her desk or the wall, kick off her shoes and throw her glasses. At home, she'll run to her room, slam the door and proceed to scream at the top of her lungs and bang the door, the bed, or whatever makes the most noise. When she reaches this point there is no reasoning with her, and no way to calm her down until the "tantrum" runs its course.

My problem is that the doctor and the last counselors (yes, that's multiple) we saw either didn't take us seriously or doesn't see how it's problematic that a SIX YEAR OLD is behaving like a two year old when she doesn't get her way. I've been told that she does it for attention because "even negative attention is attention," or that it's all behavioral because she doesn't get consistent discipline. She gets consistent discipline at home and in school; she is told there will be consequence to her behavior if it continues, the behavior continues, she gets punished and then she gets offended and upset and often seems to have trouble understanding why she is in trouble.

She also "fixates" on things. Not just having "an interest" in things, but truly fixating to the point where she turns a scenario into a horror story and thereby upsets herself. For example, we'll start a completely innocuous conversation about when her next swim class will be. I'll tell her and then she'll say "But what if the building burns down? Then I can't have swim class." This soon turns into a complete downhill one-sided conversation and speculation about how if the YMCA burns down, she can't take swim classes, she'll never learn to swim, she 'll go the beach and drown and she doesn't want to drown and what if our house burned down and DH and/or I were inside and she'd lose all her stuff and she doesn't want me or DH to die. The end result is a little girl in tears because she doesn't want her house to burn down or her parents to die in a fire, all because of one simple question and a tangential fixation.

Her fixations aren't always so negative. Sometimes, she might lose a toy and she'll repeatedly talk about the lost toy: where is it? why is it lost? how did it get lost? have we seen it? It has to be found. It's lost forever. What's she going to do if she never has that toy and can never play with it again.

I even believe that she might be more sensitive to pain and touch sensations than other people, but there's no way for me to test that. She is more sensitive to noise and, particularly, smells. She frequently falls or hurts herself and has "extreme" reactions to painful stimuli. She also finds foods spicer/sweeter what have you than others detect.

I'm tired and I'm at my wit's end. I suspect that there is something more going on here other than a few behavioral quirks, but I feel like I'm going bitch slap the next psychologist who talks down to me or doesn't feel there's anything further to explore. My insurance is limited to in-network (and we can't afford out of network), and I'm going to run out psychologists soon enough.

I should also add that I had gestational diabetes and pre-eclampsia. She was five weeks early and in the NICU for 10 days. She experienced moments of stress during labor and delivery, low heart rate, and her first APGAR was a 3. (Her 5 min APGAR was a 9).
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