Special Needs

provisional diagnosis questions

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

  • I'm really surprised they were shocked by her behavior. Dd has days where she is really on and social. It's to be expected with kids on the spectrum. Does she have a new classroom? Dd tends to come home really focused and organized.
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  • Has DD seen a neurologist, had an MRI?
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  • Has DD seen a neurologist, had an MRI?
    She did a 24 hr EEG with the ped neuro Christmas Eve for suspected absence seizures, but saw no activity,neuro cleared her then. No MRI.
  • I ask only because my understanding is an MRI may be indicated in any case of regression.
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  • edited August 2014
    -auntie- said:
    I don't personally know any kids with Aspergers who had regression.

    I find DS has days when he's pretty typical acting and days where he really stands apart. As a little, a slight fever or URI generally caused more typical behavior.
    So, probably not Aspergers then. I just don't know. She is bright. This is the kid who at 12 months asked the doctor to use the stethoscope to listen to her heart and at 13 months asked my home nurse to use the doppler to listen to her twin sisters. The kid who at 1.5 years maxed out on the test (Bradley?) EI was using at a 5 year old level, when they didn't have the material to even test her at a higher level.

    And now over the past 3-6 months, we are seeing grunts/ noises instead of answering with words fairly often, she can no longer hold scissors in her hand and cut, trouble with buttons and zippers, some noticed hand weakness, and lots of W sitting indicating hip tightness. The OT mentioned maybe she is overwhelmed with difficult tasks and just resorts to "I can't". She does have a noted short frustration level and gets very agitated  when she can't do something, but is so independent she will not usually ask for help.

    Yet, as noted yesterday, the bizarre chirpiness, fluttering around. Talking at you, not to you most often, with some attempts to engage ex "Look, look at this I am doing" although, she does it regardless if you look.

    She has been seemingly healthy the past 6 months, one very minor cold that resolved without intervention in a few days, did run a fever for 2-3 days. No big life changes, no trauma. 

    I am so lost.
  • edited August 2014
    -auntie- said:
    DD1 started acting abnormally for her; engaging the doctor, being chirpy, fluttering around the room. The psych asked if this was typical.

    Not to be harsh, but this doesn't sound like fully appropriate behavior either. Did the psych try to challenge her in appointment, in any way to see what her reaction might be? Like I said before, some kids have days where they seem less atypical. If this woman previously did a workup that felt like play with an indulgent adult, I could see where she'd have been happy and engaged to see her two weeks later. As a little, DS was always more social with adults as a rule.

    The pysch didn't push her too much in her evaluations previously. She did an "informal ADOS" but was able to easily see the fleeting eye contact, the avoidance of responding to her name,not using toys in typical ways, etc. I absolutely got the sense that DD1 was glad to see the doctor. She immediately asked where the doll was, where the rockets where etc. (all tools she had been allowed to use at the last visit for the ADOS).  DD1 has always been more social with adults, particularly with indulgent medical professionals who are there to see her. Can't say I blame her on that.

     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. 

    Sounds like this could be a honeymoon phenomenon. A lot of kids with Aspergers-like presentations do this. It's pretty usual for any pre-schooler to take time to process their day a bit before telling their parents about it, btw. It's probably the single biggest complaint from moms of preschoolers- being met with silence on the drive home after posing the question "what did you do in school today?".

    LOL, even DS needs some processing time to share, especially with DH who was happiest as a college student. When he was at the community college a mere 2 miles away, he wasn't as abe to share as he was yesterday after a 55 minute train ride and 15 minute ride home from the station.

    It could also be that she's being a little "manipulative" in sharing her day because she realizes it gets your undivided attention or makes her special- given your family's spacing this would be a great way to carve out some one:one time with mom.

    The manipulative bit doesn't surprise me. I know time/attention is a big thing for our family dynamics. We try to make a big deal of talking about HER day and being all about her.


    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. 

    Huh? Either the psych did a robust eval or she didn't. If your DD straddled ASD, ADOS, GADS, GARS, Vineland would have reflected that. I'd sort of side eye the professional who would phrase it thusly- I mean how are you as a parent meant to wrap your mind around a dx if the doc has no faith in her work? It's hard enough to process without someone sowing niggling doubt. Advocating could become a challenge at an older age, but for now I think she'll be OK.

    Per her typed report, it was an informal ADOS and some parental reports, review of background information etc. I was a bit taken aback that she would just completely question what she had been sure of before. 

    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. 

    This metomorphisis took place in an hour or so? I know a lot of kids on the higher end of the spectrum, especially those with Aspergers (who are more socially aware), who could be typical seeming for short periods. 

    Yes. DD1 came in and kept to herself for the first little bit as we dove into the report, then she started engaging the psychologist, after a bit, she wound back down and went on to stare out the window, pile things up, and had several instances of echolalia as she listened to us wrap things up.

    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 stuttering could be developmentally appropriate- there's a phase most kids go through where their cognition outstrips their ability to express their thoughts. It's usually pretty short lived.

    Motor skills regression is more of a concern. Are you saying she truly can't demonstrate a skill she had previously, or are you seeing that maybe she isn't cooperating?

    Honestly, I don't know what to think of the regression. Re:is it a true lack of ability or a frustration/coping thing to avoid something that is difficult. The OT mentioned the easily frustration bit, but also noted some weakness in the hands. I did noticed she would throw puzzle pieces in an attempt to not have to do a puzzle she found childish but when prompted, she easily completed the puzzle during the fine motor skills assessment by the OT yesterday.


     The psychologist went on to mention Rhett's disorder and regressive Autism. 

    Are they doing tests for Rhetts to R/O?

    Nothing as of now. The pysch mentioned having the pedi follow along and order tests if necessary. 

    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.

    JMHO, I prefer this approach in young children.

    I know a number of kids with HFA, Aspergers and PDD-Nos who started out with a dx that was "working", "provisional" or "tenative" early on.  It was especially common when docs had the 3 options from which to choose. In some places it can impact services, but generally if a child is atypical and impaired enough to be on the radar in the preschool years, they will have pretty obvious educational needs.

    After some reading last night, and talking to our coordinator, I am fine with this. She should have the same access to service as if she had a solid dx. I think some time to see how things work out will be good.

    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?

    Not sure I'd toss out a dx based on 45 minutes of typical behavior. Did the psych observe her with peers? Often that's the tie-breaker in younger kids.

    No observation with peers. We have pushed for this with everyone we have seen since day 1. We feel this is what would cement things. She is extremely bright, responds well to indulgent adults especially 1:1, yet put her with same age peers and you will almost always find her in a corner, hyper interested in her special areas. I've noted that at every drop off/pick up at the new school so far, she is alone on some corner of the playground or class. Today at drop off she was taking some flowers for the class, an older girl took her in the room, DD1 did not talk to her, just followed her and did as told and then went off to do her on thing. I see a lot of the older students "mothering" her almost, despite her being equal or above their cognitive levels. Socially, she is not there. 

     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.

    This is concerning. Have you seen a dev pedi? Was this person a neuropsychologist? Clincial Psychologist? Psychiatrist?

    We have never seen an actual dev pedi, only psychologists at the dev pedi clinic. The doctor yesterday was a clinical psychologist at a private practice, not affiliated with the dev pedi staff.

    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.

    I would guess if she qualifies for speech and OT based on delays- that need should drive the services for now. I'm curious though, if her speech is "early and advanced" how is she qualifying for speech services? Most kids I know with Aspergers don't get picked up for speech until they're older and start to demonstrate issues with code switching, "wh" questions, prosody and pragmatics.

    The speech was a recommendation from the psychologist in reference to the sounds/growling when she wants to avoid talking/answering questions (again, I wouldn't put this past her to be used strictly in a manipulative sense), echolalia, and some emerging pragmatic concerns. Otherwise, yes, she is very verbally advanced.

    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.

    Hard to say. I know some folks who struggled with Cali's RACs over this sort of thing, but school districts often do the right thing.

    The good thing is, after a few calls today, we should see no service disruption. So, I am happy with that, after all, my ultimate goal is to give her the services she needs for the areas she needs them, regardless of what any potential diagnosis is. I think the solid relationships with providers over the next how ever long will be key, so we can revisit the diagnosis and look at what has happened over a specific time frame. The regression thing, I don't know. I could see it not being a true regression aside from the OT's concern of hand weakness. Time will tell, I suppose.


  • The provisional Dx might make sense but I'd also be taken aback that she was so quick to question her initial Dx. I'm glad she'll be able to keep her services; hopefully things will become more clear with time.
    fraternal twin boys born january 2009
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