ADOS/aspergers ?s

thetwinkies&Vivi

We had a meeting at developmental peds with a psychologist yesterday to review all of the data from both DD1'S special needs ped, and special needs coordinator (who is locally well respected and skilled at ASD screening). We had seen this psych previously,  June of last year for suspected ASD, but were with a different ped at the time who did not substantiate any of our concerns, just offered the referral.   That evaluation in June 2013 ended with the psych saying DD1 showed no risk of ASD (performed a Bayley and STAT).

Our special needs coordinator performed (Feb 2014) an extended MCHAT that showed her as severe risk, and also did a STAT which she passed with a 0. The coordinator noted however, that due to DD1'S extremely high cognitive scores, she felt the STAT was an ineffective screener. The coordinator conducted her own observations as well as an indepth interview with us. She then went through the Dsm checklist and marked 36 od 38 boxes under ASD . Both she and our special needs ped absolutely bekeive DD1 has Aspergers. All of this data was sent to the psych.

Yesterday, the psych went over the new information provided by our pediatrician and special needs coordinator, as well as did a fairly thorough parent interview again. She did some very minimal observation of DD1, but nothing official, no tests etc. She stated she would not peg DD1 as Autistic off the street (I doubt most would, its in the interactions it becomes most evident)b ut that our concerns, and the data sent was consistent with ASD. Therefore,  she felt scheduling ADOS would be appropriate.  While wrapping up our meeting,  we mentioned how babynet had mentioned DD1 being anxious.  It seems like the psych suddenly clung to that and tried to say that could explaim everything.  We don't disagree that she can be anxious, but, we feel when looked at closely, its in response to being overstimulated. She has SPD and a history of OT for it. Overall, she's not anxious, just in situations when it's too loud, her clothes are scratchy, etc. I don't doubt it may be a piece of this, but to me, there is no way anxiety explains the whole picture we're seeing. 

We asked about DD1 being observed at school with same age peers, and home where she comes most unglued and were told the clinic doesn't do that. My concern is they are not getting an accurate observation with our areas of concern (emotional, social). Will the ADOS be effective teasing out the things we see and are concerned with? She can generally hold it together for half a day or so, especially for doctors giving her tests. She has an intense special interest in them, so she is mostly compliant with doctors. They sent home SRS-2 for us and her teachers. However,  her teachers are older, grandmotherly types who aren't super in tune to the fact that her play is scripted, her pragmatic language issues etc. They have noted meltdowns over schedule changes, and her wanting to be alone however. I am concerned about what we see at home versus school. She attends a 4 day/week half day program.  We have noted her outburts and behaviors we see becoming more abundant at school, though.

I am nervous that between a doctor who doesn't want to admit she may have missed or not taken us seriously the first time, and who seems stuck on the anxiety piece, and a lack of them observing our areas of concern in a real enironment, we may get sent on again with no help yet. We have the option to have her evaluated by our local university autsim lab, and by our school district(who does school/home visits.) Should we pursue that, or can we have confidence in the ADOS (performed by aforementioned psych and her colleague)?

kcisthebombdotcom

I'd probably do the ADOS and see what comes of it. I was very nervous about my dd because she has great, unscripted pretend play skills and is social with adults but she ended up being dx. Most of the stuff was incredibly subtle like she showed appropriate emotions and made eye contact but did not sustain it for as long as they liked.

thetwinkies&Vivi

Thanks @KC_13. The psychologist didn't go into detail much about the ADOS, so it's good to know it looks into things more in depth and one noted finger point, when it's not the norm doesn't skew results etc. . DD1 will make eye contact if prompted enough, but like your DD, she will not sustain it.

kcisthebombdotcom

thetwinkies&Vivi said:

Thanks @KC_13. The psychologist didn't go into detail much about the ADOS, so it's good to know it looks into things more in depth and one noted finger point, when it's not the norm doesn't skew results etc. . DD1 will make eye contact if prompted enough, but like your DD, she will not sustain it.

Yeah, little things won't skew the results. Dd followed a point during the testing and pretend played and it didn't disqualify her from a dx or anything.

thetwinkies&Vivi

@-auntie-‌ Do you have any insight you could share? I'd appreciate it.

thetwinkies&Vivi

thetwinkies&Vivi said:

I appreciate the shout out, but I don't know that my thoughts on this will be of much value to you. I'll give it a go.

Thank you, I do appreciate it.

We had a meeting at developmental peds with a psychologist yesterday to review all of the data from both DD1'S special needs ped, and special needs coordinator (who is locally well respected and skilled at ASD screening). We had seen this psych previously,  June of last year for suspected ASD, but were with a different ped at the time who did not substantiate any of our concerns, just offered the referral.   That evaluation in June 2013 ended with the psych saying DD1 showed no risk of ASD (performed a Bayley and STAT).

STAT is a screening tool for ASD risk, not an evaluation tool. Bayley Scales are a general tool for child development.

At her age- 2 1/2- screening might not reveal anything because the "standards" against which she's measured are based on an age group with social, emotional and cognitive skills that are still in a very emerging state. 

Our special needs coordinator performed (Feb 2014) an extended MCHAT that showed her as severe risk, and also did a STAT which she passed with a 0. The coordinator noted however, that due to DD1'S extremely high cognitive scores, she felt the STAT was an ineffective screener.

STAT is meant to be used in a community setting; it's a pretty blunt instrument. I could see where a bright kid who would have formerly gotten an Aspergers dx would not be picked up.

I've never heard of an extended m-CHAT. The standard is a screening tool meant for parents/PCPs to screen kids up to 30 months. Is the extension more than the basic 20 part  questionnaire or is it for older kids. Was she under 2 1/2 when she was screened?

The thing about this tribe is that they tend to pass for typical. Back when Aspergers was a dx, the kids being identified tended to be about 6 at the youngest because their adaptive skills and speech are age appropriate.When DS got dx'd, the average age seemed to be about 11. This is still pretty common. 

 I don't know any kids who got an Asperger dx who were in EI IRL- they don't tend to  have the sorts of delays in speech, or motor skills that would draw attention and qualify. In retrospect, there were red flags- DS's preference for adults (which could be explained by being an only/oldest), his early speech (which tends to run in my family, but not as extreme), his high threshold for pain, his seemingly superior cognition (which is also a family trait), etc.

STAT and MCHAT are screening tools, not evaluation/assessment scales. If I had a dollar for every kid with Aspergers I know who passed MCHAT, I could go go out for a very nice dinner and bring several friends. And get them drunk of an excellent California Cabernet.

 The coordinator conducted her own observations as well as an indepth interview with us. She then went through the Dsm checklist and marked 36 od 38 boxes under ASD . Both she and our special needs ped absolutely bekeive DD1 has Aspergers. All of this data was sent to the psych.

I am unfamiliar with a DSM checklist for diagnostic purposes. There's the diagnostic criteria, but that doesn't have as many points. Could it have been CARS or ADI-R? They're both formatted  like checklists.

But I have to ask, and this is why I didn't answer when you first posted. I couldn't think of a way to pose this question without it coming off a little snarky. And I don't mean to be. 

Why Aspergers given that it no longer exists in the DSM? It would be easier to advocate for services if she was dx'd with ASD which is a recognized classification under IDEA. Even DS, who has Aspergers by right of being dx'd with it when it was in the DSM was classified for education purposes with autism. Is it because you are stuck around her cognition and language as being superior? Be assured that people with classic autism can also be bright. The smartest kid I know with an ASD was dx'd with Autism. His language skills were amazing and he was crazy smart (taking college level physics and math in middle school) but his social and adaptive skills were very impaired/atypical. he was identified a lot younger than DS who is considerably less intelligent (taking college level math in college) but less impaired and less atypical.

FWIW, most kids with Aspergers get a dx at about 6 at the earliest because they have to demonstrate age appropriate adaptive and language by at age 3 which kind of sets the threshold for many clinicians at 3+ for diagnosis. GADS isn't even normed until age 3. The best speech assessment for pragmatics is normed for ages 6+.

Yesterday, the psych went over the new information provided by our pediatrician and special needs coordinator, as well as did a fairly thorough parent interview again. She did some very minimal observation of DD1, but nothing official, no tests etc. She stated she would not peg DD1 as Autistic off the street (I doubt most would, its in the interactions it becomes most evident)b ut that our concerns, and the data sent was consistent with ASD. Therefore,  she felt scheduling ADOS would be appropriate. 

ADOS is one part of getting to an ASD dx. If they suspect an autism presentation more like what was previously called Aspergers,  GADS and ADI would also be useful if she's old enough. The downside to ADI is that it's an interview and would rely on accuate reporting rather than a professional making an observation as ADOS is.

While wrapping up our meeting,  we mentioned how babynet had mentioned DD1 being anxious.  It seems like the psych suddenly clung to that and tried to say that could explaim everything.  We don't disagree that she can be anxious, but, we feel when looked at closely, its in response to being overstimulated. She has SPD and a history of OT for it. Overall, she's not anxious, just in situations when it's too loud, her clothes are scratchy, etc. I don't doubt it may be a piece of this, but to me, there is no way anxiety explains the whole picture we're seeing. 

Anxiety is a huge piece of Aspergers for most people with the dx. It drives the bus at our house.

It's really hard in a young kid to get a handle on anxiety because it lives between their ears and you can't always see it. Especially in a kid who shuts down rather than acts out. It takes a certain amount of bandwidth to articulate anxiety.

We asked about DD1 being observed at school with same age peers, and home where she comes most unglued and were told the clinic doesn't do that. My concern is they are not getting an accurate observation with our areas of concern (emotional, social).

DS's dev pedi doesn't do in school observations, but his psychologist will and has. A school based assessment should also include this. Frankly, at this age most kids are transitioning through parallel play to associative and then to cooperative play. I don't think observing her with peers would offer any real insight at age 2 1/2.

 Will the ADOS be effective teasing out the things we see and are concerned with? 

It could since it gets to the core of the social and emotional deficits. She's so young, that she could slip under the radar because the expectations for people her age are so low. Most typically developing kids wouldn't be able to pass the ToM "Sally/Ann" test.

She can generally hold it together for half a day or so, especially for doctors giving her tests. She has an intense special interest in them, so she is mostly compliant with doctors.

I can see where the docs might ascribe her cooperation to enjoying the attention of adults because she's the oldest of 3 under 3. 

 They sent home SRS-2 for us and her teachers. However,  her teachers are older, grandmotherly types who aren't super in tune to the fact that her play is scripted, her pragmatic language issues etc. They have noted meltdowns over schedule changes, and her wanting to be alone however. I am concerned about what we see at home versus school. She attends a 4 day/week half day program.  We have noted her outburts and behaviors we see becoming more abundant at school, though.

They may be more aware than you think. Most sweet grandmotherly preschool teachers know a lot about what is typical of the age and will often be more forthcoming if asked to report to a professional rather than a parent.

I am nervous that between a doctor who doesn't want to admit she may have missed or not taken us seriously the first time, and who seems stuck on the anxiety piece, and a lack of them observing our areas of concern in a real enironment, we may get sent on again with no help yet. We have the option to have her evaluated by our local university autsim lab, and by our school district(who does school/home visits.) Should we pursue that, or can we have confidence in the ADOS (performed by aforementioned psych and her colleague)?

It's really hard to say. I can't see where the doctor who "missed it" would have any impact on this; one wouldn't expect to be able to dx what was once called Aspergers at 2 1/2. 

I think you'd get a better eval if you waited 12-18 months because she's too young for a range of scales and because the peers against whom she will be measured aren't capable of much socially and emotionally. The SRS-2 they gave you isn't even normed for toddlers which means it's not valid until she's 3+.

Kids who are atypical enough to cause their parents anxiety don't get Aspergers as a dx at 3, they get autism because they're more atypical. I've seen such kids get an "upgrade" when they're older and have caught up around speech and adaptive skills. But now that Aspergers isn't a dx being used on those getting identified in 2013 and beyond I don't think the .

Those who previously held a PDD-Nos or Asperger dx have been grandfathered into the ASD dx. So I'm sort of side eyeing a professional who is tendering this as a potential dx. I know a few people who have recently gotten an ASD dx whose doctors have said that under the previous DSM they would have been labled with Aspergers or PDD-Nos but they were kids who were much older, 9 and 14.  

Thank you very much for your reply. I can not for the life of me get my tablet to work with me in forming a nice reaponse touching on your points, without having a huge wall of text. I know they are looking at an ASD diagnosis sense Aspergers has been essentially enveloped into that with the newest DSM. I think I'm just hung up on that word as it has been used to specify her presentations and it was also thrown around in regards to me. I'm completely fine with her diagnosis being ASD, and her being anywhere on the spectrum. As of now, she's scheduled for ADOS on Wednesday. I guess we should see how that goes, stick to the therapies available now and revisit further evaluation in 12-18 months if needed. I know a lot of what makes this diagnosis at this point in time difficult is her age. There isn't a high level of expectation for performance in preschool and she's already ahead of the game with private preschool, therapy, and parents who are aware. It is becoming more obvious though as her peers are developing social skills and she's not keeping up. I see now how lots of girls can make it to late middle school before receiving their Dx. It can be subtle. She does fairly decent holding it tofether for school then unleashes at home. I need to look more into behavioral therapy suport for home at this point. She had her biggest meltdown ever at the dog rescue yesterday, and quite frankly, I'm surprised CPS wasn't called. We got plenty of nasty uneducated assumptive comments our way. Luckily, the rescue person we were working with had a son on the spectrum and not only understood, but was impressed with the way I helped DD1 through it. I fear there will come a day when we have to answer questions to some agency about her outburts though. I've been keeping her folder of evaluations handy for fear of that, as well as her handicap placard. I really do appreciate your insight. It's rough having mother's instinct and being backed up by trusted medical professionals who know her well, and know something is definitely not NT, but having to wait for the appropriate DX and therefore the most appropriate help.

thetwinkies&Vivi

As far as me and Asperger's it was brought up several times during my school years. My father wouldn't accept it really "because I was too smart to have something wrong"my mother was concerned, but never really pursued it. She now regrets not looking into it especially with the concerns being brought up over DD1. To add to it I was the kid that scored 11th grade reading level in 2nd grade, began reading before 3 years old, but never could get it together socially. I decided as an adult to work on that in the form of an interview coach and if I do say so myself, I get by fairly well now. I would venture to say I would have qualified for a Dx. DD1 is apparently my clone as far as behaviors, quirks, early language development etc.

No better way to suck the air out of a room than to drop that line, huh?

I'm sorry about your experience with CPS. Apparently as a young child, I concocted a startling story how my mother tried to choke me, which was never true, but I wouldn't let it go, and authorities got involved. It was finally cleared up, no help from me, who was also to shamed to admit it. Ive probably got it coming.

We had an eventful afternoon whereI mixed up DD1's appointment time and arrived an hour early. She had a complete meltdown in the change of schedule, so the office staff got to see that. Her ped and the special needs coordinator were both pretty "impressed" by the tantrum, so I guess its good they got to witness that. We're all just waiting to see how Wednesday goes and then form a plan.