Feedback appt today for ASD eval

Re: Feedback appt today for ASD eval

• macchiatto member

  December 2013 edited December 2013

  One other question: Our new school district seems very open to using outside evaluations as long as we are OK with it (i.e. they asked if we wanted to use his private OT eval from August rather than them doing a new eval on him). When I told them he's being evaluated for ASD they said I could send them devel pedi's reports and they would supplement/add to her evaluations as needed. Do you think they'll do anything with this "at risk" category since he doesn't have a Dx beyond social skill delay (and hypotonia, anxiety, DCD)? Dr. B. said he would do best with a teacher who is willing to help prompt and cue him socially and work with him a little on those social skills, and also that schools sometimes have informal social groups for kids needing extra help with social skills. When it comes time for his IEP meeting, is there anything we can ask for to address the social delay/communication issue?

  fraternal twin boys born january 2009

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• macchiatto member

  December 2013 edited December 2013

  -auntie- said:

  macchiatto said:

  Here is the recent summary of the back story:

  https://forums.thebump.com/discussion/12172661/the-adi-r#latest
  

  
  

  So today was the feedback appointment where Dr. B. (devel pedi) went over results of the ADI-R, ADOS, CARS, SCQ, and questionnaires she got back from both preschool teacher and two EI's who observed DS at preschool.

  
  

  When he was evaluated a year ago, he didn't meet the criteria for ASD though there were some red flags. This time, to quote relevant summaries from her report, she stated that he is at risk for ASD  and (after mentioning he is acquiring basic skills in most areas; good receptive-expressive language and cognitive skills; delays in fine motor self-help skills and difficulties with coordination), "A .has many features consistent with ASD. He presents with a phenotype similar to Asperger Syndrome. The classification of Asperger Syndrome is now under ASD. Often in children with ASD who are higher functioning with good cognitive skills, the symptoms are not present until the child is older and the social and language demands become more complex ... A. met criteria for autism/ASD based on the ADI-R. Observations of behavior and interactions at preschool from his EI (and her supervisor) were consistent with ASD. He did not make criteria for autism/ASD on the ADOS-2 [he scored a 5]. ...

  
  

  So, close but no cigar.

  
  

  How did the CARS come back? Did she do GADS which is specific to Aspergers (AS)?

  
  

  Thank you so much for your thorough response! As always, it's much appreciated. Looking through the report, it looks like she summarized answers from the CARS2-PC but did not give an overall score. There was one item listed as a severe problem (initiating social interactions with others) and quite a few "mild to moderate problems" with examples listed. It doesn't look like she did GADS. Is that something we should request? Perhaps from the school district? 

  
  

  I'm a little concerned about the way she explained Aspergers as being under the umbrella of ASD. It no longer exists in the DSM-5. People who previously met the criteria for AS were grandfathered into ASD because there was a risk that a few might not meet the new criteria and lose supports or services. I know a lot of adults with AS who were flaming over losing their unique label. 

  
  

  Can you explain your concern? Is that because it sounds like she may not be up to date on her DSM5/ASD knowledge? Or because of how her wording may influence others who will see this report (school district, DDSN, etc.)? Also, I'm curious if you think a kid like this might fall into that gray area where he would have met criteria for AS under the DSM-IV-TR but won't for ASD under DSM5.

  
  

  Most of the professionals I know would couch it as a presentation consistent with what was previously described as Asperegers Syndrome. Sort of like that awkward phase when a certain rock star was the artist formerly known as Prince. 

  
  

  That said, having AS as a road map, there are certain strategies and books that would likely be useful in your situation. 

  
  

  The OASIS Guide to Aspergers Syndrome and Parenting Your Aspergers Child are two that come to mind.

  
  

  Thank you for the recs! Ordered both. 

  You know, even though ASD has been tossed around for DS for 2 years now (and we always figured it would be Aspergerish if on the spectrum at all because of his verbal skills and overall presentation), I really hadn't done that much research on it because I kept hearing from most that he would probably outgrow all of this. Instead, he seems to be growing into it. He scored a 1 on the ADOS a year ago, and a 5 on the ADOS-2 now. The devel pedi also seems to think moreso this year than last that he's heading toward a Dx, even though he's not there yet. It's definitely seeming a lot more real now.

  
  

  
  

  She noted that he is talkative with good language skills but has decreased eye contact, difficulty with nonliteral language and use of gestures to communicate, continued difficulties with peer interactions, perseverations re lions and the color purple for most of his life, limited and rigid pretend play skills (often simply manipulating and inspecting objects). 

  
  

  This is very AS-ish stuff. Perhaps as he gets older it will be more clear cut. Most kids with AS are identified in kindie/first these days. When DS was identified in 1999, 10 seemed to be the usual "early" age for a dx of this kind. It can be that subtle. I suspect having a twin colors how he presents, too.

  
  

  She did say a lot of what he does is subtle and she could see why his preschool teachers (busy with 15 other kids as well) hadn't really picked up on any social concerns at this point. That's an interesting point about having a twin (who happens to be very outgoing, daring and athletic; they're quite opposite). I think you may be right.

  
  

  One thing she didn't mention is the delay in social and emotional maturity. For kids with AS, it's about a 1/3 chronological age delay. This is nothing at 4; if he operates as a three no one will think much of it. But when he's 14 and acts nine, things will be very hard socially. Especially if the other boys are into sports and music and he's stuck around lions or the Titanic.  Personally, at my house, DS is 20 and transitioning through the know-it-all teen boys phase characterized by thinking his dad is an idiot and rolling his eyes a lot. His friends did this around 15-17. I am not loving it.

  
  

  Sorry; that does not sound like a fun stage! And you're right, I don't think she said much about that (though she did say at this point he has a social skill delay; I don't think she mentioned emotional maturity). It does seem like he's lagged a good year + behind in those areas though, compared to not just his twin but other peers, even though in some ways he can be quite precocious.

  
  

  Based on all of this, her recommendations for now are:
  * continue EI and OT once a week (we have appealed for him to continue EI/service coordination until he turns 6) 

  * Start attending a weekly group speech therapy for children with pragmatic/social skills delays

  * Keep attending My Gym to help with his hypotonia/gross motor delay (he "graduated" from PT a year ago but we'll get him re-evaluated just to see where he's at now, since he fell way behind in fine motor again after "graduating" from OT 15 months ago)

  * Get the book Navigating the Social World for us to use with him at home

  * Rory's Story Cubes, which she said would help him with creativity and his rigid ideas of how things should go (as others take turns telling a story he started)

  * Possibly have his EI meet with his Pre-K teachers (he attends a private preschool 5 mornings a week and his teachers are open to feedback/doing whatever they can to help) so she can give them suggestions for helping him work on his social skills

  
  

  Sounds like the usual AS battle plan. DS always did his social skills work in school which was useful because he could work on emerging skills in the natural setting of his occupation as a student. DS's psych's DD ran social skills groups out of his office, but they never suggested them for DS because they tended to be kids who were more impaired in this area than he was but most of the parents found them useful. One nice thing is that it can be a source for playdates in certain situations. Plus the waiting room functions as an impromptu support meeting. 

  
  

  I really like Michelle Garcia Winner's Social Thinking materials for social skills. They have stuff for preschoolers, but I don't know if it's as good as what she's created for older kids- like I said, most of this subset of kids with ASD are already in kindie before concerns are recognized. 

  
  

  What problems is he having in preschool? DS didn't have issues in preschool, but we always made his psych available to teachers and his IEPs always had itinerant support and training for teachers included.

  
  

  His teachers (who filled out the form about 6 weeks into the school year) actually noted very few concerns. They love him and were initially surprised to hear he's in therapies or that there were concerns about his social skills. They did mention some mild concerns with fine motor skills, resistance to change, and sensory issues, but rated him a 4 out of 5 on "relationships with peers" and said he plays well with other children but is also fine playing by himself. (Which initially made me wonder if maybe he really was outgrowing these issues?)
  
  However. Two different EIs observed him at preschool twice each and what they noticed was that even though he was *around* the other kids a lot and might appear on the surface to be playing with them ... that he was really pretty much ignoring them and doing his own thing, even when they tried to engage him. He often had to be prompted to talk to them and when he did have a few brief moments of pretend play during center time, he was rigid in his ideas of how things should go. At snack time he sat there the whole 30 minutes just eating his snack and not saying a word even though all the kids around him were chatting with each other. During circle time, he would zone out a lot and was a lot less responsive than the other kids. (Though when asked directly, he knew the answers.) This fits with what we observe at play dates, church, birthday parties, My Gym free play, etc. He does play interactively with his twin brother and does OK at interacting with parents or older kids who are gentle and patient, but it doesn't seem to extend to other peers beyond brief snippets here and there.

  
  

  He is also in the middle of the eval process with our new school district and is also being followed by a neurologist (re seizures) and has just started seeing a genetic/metabolic specialist. 

  
  

  How does all this sound? Any additional suggestions or recommendations?

  Also, to what extent would you explain this to playmates' parents? So far I haven't said much; they know about the hypotonia and gross/fine motor delays but most don't know about the social skills concerns (they tend to think he's shy/introverted). 

  
  

  Sounds like a decent plan for now. As he gets to "real" school, you'll be more able to tweak it as needed. 

  
  

  I'm not sure I'd "share" at this point. You didn't really get a firm dx. Plus, unless you are leaving your son in the care of another, there's really no need to. Some people might back off their child's relationship with both your kids. Now that DS is older, I am certain that not turning him into an AS poster child was the best choice for him.

  
  

  I didn't share except with my close friends and later with his scout leaders when he was old enough to be on outings without us. There were a couple I shared with who would have to be reminded at times as DS got older and more capable as a kid. 

  
  

  That makes a lot of sense. The one thing I struggle with more as he gets older (almost 5) and people's expectations get higher is when he appears rude to others who try to interact with him, especially in a noisy or crowded environment. He's gotten a little better over the past year and will sometimes answer questions but he'll still do a lot of ignoring people, saying, "Don't talk to me!" or "I can't tell you; it's a secret" when they say, "How are you doing?" or "Did you have a good Thanksgiving?" or other basic small talk. I will give him suggestions for an appropriate response and he's gotten better about *sometimes* repeating it, and sometimes I'll just explain to the other person that he's a little overwhelmed by the crowd/noise. Any other suggestions for how to handle that? 

  fraternal twin boys born january 2009

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• macchiatto member

  December 2013

  Also, thank you so much for your suggestions re the school district. A couple notes:
  
  * His old district (who evaluated him when he was about to turn 3) did the Vineland. I will ask for the Vineland and GADS as part of their eval. 

  * I'm curious as to why you suggested having the boys in separate classrooms. Classroom placement for twins is something I've been interested in for a couple of years and have researched a fair amount. Based on the research I've found and how well it's gone so far having them in the same classroom, we were tentatively planning on keeping them together for Kindergarten and take it year by year after that. One thing that jumped out at me is the study that found twins who are separated earlier in primary school tend to have more emotional problems later on. However, the research I came across wasn't based on twin sets with one NT child and one child with SN so I'm not sure how that changes things. This year there is 40 minutes per morning that the class is in 2 separate groups in different rooms and I asked for them to be separated for that part but in the same classroom otherwise and so far it's going well. 

  fraternal twin boys born january 2009

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