DH and I along with DD1 went to pick up her report from the psychologist from our appointment about 2 weeks ago where she diagnosed her with Autism. We got there and she started going over the report. Then, DD1 started acting abnormally for her; engaging the doctor, being chirpy, fluttering around the room. The psych asked if this was typical. We told her in the past week, since beginning Montessori school, we have seen a brief period after school where she is more animated, agreeable, interactive etc. Generally, immediately after school she is a bit grumpy and will not engage in questions and answers about her day. After a bit, she will offer up little tidbits of her day, on her terms though. It's not a give and take but more a rundown of her day, pretty much one sided.
As things continued, DD1 was just this bizarre creature. Eventually the psychologist, who two weeks ago after 2 observations (including an ADOS) firmly believed DD1 was on the spectrum, said she just didn't know any more. She said it was like light and day from the last observations to today. Towards the end of the appointment, DD1 began winding down with the chattiness and began piling stuff up obsessively and illogically and acting more like the child we are used to seeing.
The psychologist said what concerns her the most is the regression in all areas. We discussed our her OT eval from this morning that noted several areas where she could no longer perform tasks she once could, as well as the increased stuttering, and noises/sounds in place of words. She also witnessed several instances of echolia today. The psychologist went on to mention Rhett's disorder and regressive Autism. She said she was hesitant to let us go with an Autism dx, but agreed services were needed in the interim, so she decided to amend the report to make it a "provisional Autism diagnosis." We ended up being rushed for time, so she told us to keep in touch and that it was certainly something, she just isn't sure what.
Any thoughts? When we look at the list of what fits with Autism (she said that in the past, especially if DD1 was older this would be Aspergers) there is a lot (stimming, intense interests, specialized knowledge, early and advanced verbal skills, struggles with social skills particularly with peers, etc) that fits. Yet, the erratic behavior today just left us puzzled. If not Autism, what?
What will a provisional diagnosis mean for us? Will that restrict her access to services? The doctor was certainly concerned with the regression. That is the part that is scaring me the most as well, in fact after we left, I had a breakdown. It's been hard enough advocating for services for a kid who can breeze past a lot undetected, but now, the regression has me so on edge and nervous of what is to come.
We dropped off the evaluation at our school district and requested a consent to evaluate form. In the meantime, we plan to keep her at the private Montessori/Waldorf school, which she seems to enjoy. I am hoping this provisional diagnosis doesn't interrupt the OT and ST.
Deep breath. Enough of my ramblings for now. I guess we plan to email our service coordinator and update her to see what's next, find out if therapies are going to be affected, find out if her spot on the states PDD waiver for ABA will be revoked due to the provisional nature of the dx, etc.
Re: provisional diagnosis questions