IEP and other various questions

[annie0714]

Hi!  This board has been such a great source of information!  I hope you don't mind me asking a few more questions and getting your ladies thoughts.  My son will turn 3 this February.  He was diagnosed with ASD by a DP last year just after he turned 2.  He ran an ADOS with himself and another DP to give the diagnosis.  He has been in EI services since 16 months and is doing very well.  He is currently in a toddler ASD inclusion program for 3.5 hours a day, 5 days a week.  He also gets in home aba 2 hours a day x 5 days/week, social group for 2 hours x 1 day/week, and ST 2x/week.  His ASD inclusion program is part of the local children's hospital's Autism program, but he is currently funded to attend through the regional center.  

His school does exit evaluations on all the EI clients just before they turn 3 as many leave the school at that point as it is no longer funded by EI.  Their evaluation is pretty extensive.  They have evaluations by the OT and ST.  An ADOS is run by a psychologist who the child is not familiar with and well as further evaluations by the schools psychologist (phD level).  The report has a lengthy list of the testing that was done on him.  He did well really well in these evaluations.  The only area of defecit. was speech articulation.  Also his verbal scores were at the lower level of normal with a score of 87, though relatively weak with his while his nonverbal scores were much higher at 120.  Their ADOS came back with a score of 1.  


They did not give him an ASD diagnosis on their evaluations.  They also said that he is doing so well that he may not even qualify for services through the school district (except for maybe speech).  His school district evaluation is scheduled for early next month.  His current school has offered him a typical kid spot in their next classroom for when he turns three.  We will be paying out of pocket (though not an issue right now).  The differences with this spot instead of an ASD spot is that the class is full day and they will not be working on specific goals at all times the way he is now.  Otherwise, the teachers pretty much interact with the kiddos the same way.  That classroom has a 1:5 teacher:student ratio with up to 5 ASD kids and 10 typical kids in the class (his current class has a 1:3 ration with 8 typical kids and 4 ASD kids).  The teachers are a mix of ECE and aba interventionist in each room. The typical kids also get regular evaluations with ages and stages and regular parent-teacher conferences.  Also, because of his history, the psychologist will probably keep him on her radar.  They also had an ASD slot open, but didn't feel like he qualified for that spot.  We will have to stop in home ABA to make the full day classroom work.  


So anyway, this was a lot of background information to get to some of my questions.  First of all, he gets a school district evaluation next month.  They already have copies of his private DP evaluation with the ASD diagnosis.  If J has a really good day, I can really see them saying he doesn't qualify for services.  Is this something to just accept at this point?  I am worried that he is doing so well BECAUSE he is getting so many interventions right now.  Also, even if he does qualify for services, I plan to keep him at his current school for the time being.  His school has really been great and I've seen so much progress from him.  However, we are moving this coming summer.  His current school is pretty unique and I do not anticipate finding a similar school where we move (do not know where we are moving yet as we are a military family and still waiting for orders, but we know we are for sure moving).  I would be more interested in a public preschool option at that time if he qualifies for it.  I know that IEPs carry over between schools until the school does its own evaluation.  However, how would that work if we were not actually utilizing the services through the school?  I would like to keep him with our current private ST since he's been there since 15 months.  Would the IEP just have recommendations that the next district would carry out until their own evaluations even if we are doing something else currently.  If not, what would be the best way to keep him ready for school services when we move without changing him from the private school he is in currently?  


Also, any thoughts on the diagnosis/no diagnosis discrepancy we have now?  I am not really sure what to make of it.  I agree he is doing really well.  However, is it because of the interventions or because he never really had the diagnosis?  Does it matter at this point?  I just want to make sure we are doing all the right things for J and are not missing opportunities.  I'd hate to back of now and then down the road have problems again.  I will feel like we missed valuable time.  On the other hand, I do not want to waste valuable resources or our time either.  

Sorry for the word vomit, just trying to get my thoughts at there.  Thanks for any answers to my questions or just general thoughts on the situation!

[mrsbuttinski]

I'm super busy today, but will attempt to unpack this tonight. As you might expect, I have some opinions about this.

[annie0714]

Dec 7, 2016 16:32:40 GMT -5 mrsbuttinski said:

I'm super busy today, but will attempt to unpack this tonight. As you might expect, I have some opinions about this.

Thanks! I was really hoping to hear your thoughts on this!

[mrsbuttinski]

The plan you have in place sounds very comprehensive. Strong work.

Are you in California? I ask because of the Regional Center funding.

I'm curious as to why they do an extensive eval on the way out the door. What's the point? Are they collecting data to demonstrate evidence-based effectiveness? Is this program part of some study? My concern is that at age 3, the LEA takes over and is required to do their own MFE. Since there aren't a whole lot of instruments with which to evaluate for ASD in younger kids and since some of those are invalid if given more often than once a year, they could impact what the school sees if a child "learns" the test as a bright kid might.

I seriously side-eye the ADOS score in the context of 2 dev pedis arriving at a different conclusion. A dev pedi is at the top of the hierarchy of ASD clinicians normally. When I bridged DS to public school, the district gave more weight to the MDs' reports (dev pedi and developmental neurologist) than that of DS's psychologist who is the district's/IU's own ASD consultant. It just seems odd.

That said, this could be a situation where your DS responded really well to intervention and is testing pretty close to where a typical almost three would. The thing is, not a whole lot is expected of a three- they're still at an age where language is evolving, cooperative play isn't expected to be mastered. The core deficits of ASD- social communication, ToM, emotional immaturity, and EF glitches aren't really measurable at this age. FWIW, DS, who has Aspergers (so no speech or adaptive skill delays) didn't even get a dx until he was almost 7 because it took that long for him to start to struggle and stand out as delayed.

If he has a medical ASD, the lack of an educational one doesn't erase it. There are rare kids who don't receive IEP services from the district, but they tend to be the sort of kid who flew below the radar a long time or who have graduated from services after years of interventions.

I would have concerns about the classroom placement. A full day in an inclusion classroom without supports could be more than he could manage. I am sort of appalled at the concept of "giving" your child a slot that should be held by an actual typical peer model. I mean, WTAF? If my kid's IEP included access to typical peers I would be livid if they turned out to be on spectrum. I appreciate the lure of staying in a school you trust and access to teachers experienced with ASD, but putting a kid with a medical ASD dx into a slot that is meant to provide NT role models is shady. This alone would have me looking at a different school.

If it were me, I would have the school district MFE and ask for a IEE on the district's dime if you don't agree with the findings.

The sort of non-public school you are describing isn't common so much anymore. They're an expensive way to deliver services and some districts will use the argument that a sped setting is a violation of LRE and send services to the day care or private preschool that you pay for. Sometimes they only serve kids at a local elementary school during the instructional day.

The IEP will "stay put" until the new district evaluates and drafts a new IEP when you move. Some states have further protections that hold an old IEP in place until you agree on the new one.

It may be time to revisit the dev pedi and ask for their opinion on what they see now. Age will bring clarity, too. ASD brings a delay of about 1/2 the social and emotional age- at not quite 3, he's not going to stand out so much if he's acting as a two might. A six who is more like a 3 in terms of social and emotional behavior will.

As for interventions, it would be great to keep an IEP as he transitions. But if you do lose them, it's very likely he will eventually need them again as more is expected of him. I know a couple of kids who were graduated from special services because they were doing well and deemed "caught up". My niece's little half brother with ASD lost his IEP as he transitioned to kindie. Mom allowed herself to be flattered out of it seeing it as proof her alternative tx "rescued" him from ASD. Things went south and he really struggled under a 504. She recently moved to my district and within 6 weeks DS's old school identified him for an eval. He has an IEP already. When DS bridged to public school I didn't sign his IEP until the last day before the end of year holiday break.


One thing that really concerns me is the disconnect between his PIQ and VIQ. Assuming this is an "IQ" test and he was reasonably engaged- that's worrisome. That's a spread of more than 2 standard deviations which some would say makes the result invalid. The PIQ>VIQ result is what one would see in a child with either a language based learning difference like dyslexia and/or a child with "classic" autism. DS's VIQ comes out higher than his PIQ because of his ASD presentation (Aspergers), but his dyslexia does seem to damp that down a bit. He seems brighter than his IQ would suggest. Incidently, he has had his IQ done before and after remediation of his dyslexia and with/without medication over the years- it has remained pretty stable.

[annie0714]

mrsbuttinski
Thanks so much for your response

First, yes we are in California. We live in San Diego. As to why they do exit evaluations, I am not entirely certain, but have a few theories. Most kids coming into the program are coming from the regional center and have only seen their psychologists. They will very rarely (if ever?) give an ASD diagnosis. They will only say if a child is "at risk" or not. This is a way for some children to actually get a diagnosis who would otherwise not have access to such an evaluation. I am pretty sure they are giving a medical diagnosis and not an educational one? The group doing the evaluation is part of the local childrens hospital's autism institute. They also see patients of any age for evaluations with private insurance. I think this really serves the children with Medical insurance as no one who actually diagnosis ASD around here take Medical insurance. Therefore, it is really hard for those children to get an evaluation/get a diagnosis after they turn 3. Also, I think the regional center continues to provide some support (though I'm not sure what) after age 3 if a child has an ASD diagnosis. Also, they do a lot of research out of the center, but I am not sure if the exit evaluations play into that.

Thats an interesting thought about learning the test if its given too close together. I could see DS doing that. He was first given Module 1 when diagnosed since that was where his language was at that time. He was given Module 2 this time since he has phrase speech now. I am not sure how similar the modules are though.

One of the things that I did discuss with the psychologist when we reviewed J's report, is that I think he is really intelligent and that is why he doing so well. When directly taught, he seems to pick things up really quickly. He just seems to have to be directly taught a lot of things that I would think should come more naturally. Some examples: he didn't not learn to point until 22 months after we consistently began shaping his finger into a point. It only took a day or two of this, but still more than most do, I think? He is now great at greeting people and saying bye, but this was another thing that was specially focused on at one point. We also have taught him eye contact (though this one can still be hit or miss) His eye contact has always been good when playing or casual interactions. He doesn't make as good eye contact when requesting things or always when people are asking him things. This is something thats gotten better with direct teaching. He knows he doesn't get what he's asking for until he looks at you. Those are just a few examples of things and it reminded me of that when you mentioned learning the tests.

In terms of the classroom placement, I do side eye it as well. But from my child standpoint, I really want him to have the spot. We are moving in 4-5 months and I think keeping him here during that time is ideal as opposed to two transitions. I also think these teachers are still really good for them. I dont think they run into this situation too often where kids move into a "typical" spot. Also the school only has a toddler and preschool program. After that, kids end up somewhere else. The typical kids are actually pulled in mostly from the Childrens hospital employees. It functions as a daycare/preschool for hospital employees. They get a discount there. They do have to undergo a developmental screening with either one of the programs BCBAs or psychologists prior to starting. DS actually had to do this too even though they had just done all of their exit evaluations. They pull yet another psychologist from the center who was not familiar with him to do this. They did no formal testing, just observation. She noted that his expressive speech was a little behind, but would otherwise do well.

I will ask the Dev Pedi when we see him next what his thoughts are. We saw him last in September and he wasn't back tracking at that time. We are due to see him again in March so I will see what he says.

In terms of the disconnect between his PIQ and VIQ, this has been consistent among multiple examiners over time. The gap is actually smaller than it used to be. When first tested at 19 months, his VIQ was in the 60s (dont remember exact numbers) while his PIQ was mid 120s. People do continue to point this out, but do not really have anything else to say other than its odd.

Anyway, I think I will take an approach of careful watching for now. I think he has a reasonable plan in place. And you are right, more time will continue to make things clearer. I am not will to write the diagnosis off, but I am open to the idea that maybe was incorrect or will not impact him long term. I guess time will tell?

[mrsbuttinski]

Dec 8, 2016 10:53:12 GMT -5 annie0714 said:

First, yes we are in California. We live in San Diego. As to why they do exit evaluations, I am not entirely certain, but have a few theories. Most kids coming into the program are coming from the regional center and have only seen their psychologists.


A psychologist can dx ASD. DS's initial dx came from a psychologist.


They will very rarely (if ever?) give an ASD diagnosis. They will only say if a child is "at risk" or not. This is a way for some children to actually get a diagnosis who would otherwise not have access to such an evaluation. I am pretty sure they are giving a medical diagnosis and not an educational one?


I would expect medical. I am not surprised that most kids are getting an "at risk" label. TBH, I absolutely believe this is as it should be. It is devilishly difficult to tease out ASD in people under age 3 since they aren't expected to have the skills  that would be impaired as a result of ASD. 15 years ago, this was much more common. Many doctors refused to dx under 3 or 4 for Kanner's Autism; Aspergers was more typically identified around age 8-11. 


The group doing the evaluation is part of the local childrens hospital's autism institute. They also see patients of any age for evaluations with private insurance. I think this really serves the children with Medical insurance as no one who actually diagnosis ASD around here take Medical insurance.


This is very common outside of autism clinics run by pediatric hospitals. No physician who ever worked with DS- not his dev pedi, his psychologist or his psychiatrist take insurance. It's frustrating, but most of the best people don't have to. 


Therefore, it is really hard for those children to get an evaluation/get a diagnosis after they turn 3. Also, I think the regional center continues to provide some support (though I'm not sure what) after age 3 if a child has an ASD diagnosis. Also, they do a lot of research out of the center, but I am not sure if the exit evaluations play into that.

You can get a dx, there is just a long wait and/or costs involved. RC support is dependent on the degree of impairment now that all of the pervasive developmental disorders are under the single ASD umbrella. Previously, you could get RC services with a autism dx, but not with Aspergers(AS). It's one of the reasons the APA changed the DSM labels a few years ago. I have one friend in San Diego whose son never qualified for services with an Aspergers dx and another whose sons have services thrown at them because they were labeled HFA because of speech delays. Ironically, boy #1 (AS)is doing just OK, boy#2 is thriving at a very selective college and his brother boy#3 had his dx changed from ASD to some laundry list of language-based LDs.  


If they're doing research, the exit interviews likely support that. They could also exist as training opportunities by those in clinical rotations. 

Thats an interesting thought about learning the test if its given too close together. I could see DS doing that. He was first given Module 1 when diagnosed since that was where his language was at that time. He was given Module 2 this time since he has phrase speech now. I am not sure how similar the modules are though.

You can google any test for more information about it. 


There's a lot of overlap between Modules 1 and 2. 


One:
· Free play – Ball · Blocking toy play · Response to Name · Bubble play · Anticipation of a routine with objects · Anticipation of a social routine · Response to joint attention · Responsive social smile · Bath time · Functional and symbolic imitation · Snack


Two:
· Free play · Response to name · Response to joint attention · Bubble play · Anticipation of a routine with objects · Responsive social smile · Anticipation of a social routine · Functional and symbolic imitation · Birthday party

One of the things that I did discuss with the psychologist when we reviewed J's report, is that I think he is really intelligent and that is why he doing so well. When directly taught, he seems to pick things up really quickly. He just seems to have to be directly taught a lot of things that I would think should come more naturally.


Exactly, many brighter and more aware kids on spectrum can learn from rote instruction the skills that NT kids just grow into as a matter of their typical development. But that rote instruction doesn't change how they think.


Some examples: he didn't not learn to point until 22 months after we consistently began shaping his finger into a point. It only took a day or two of this, but still more than most do, I think?


Exactly. For most kids, they reach a certain age and just wake up with a new skill. It's breathtaking to behold, really. Interesting you talk about pointing. FTR- DS was pointing at 9 months. I distinctly recall him pointing to a sign that was covered in pigeons and saying "Birds". It's not that a kid can form a point with his fingers- it's what pointing means- non-verbal joint communication/shared reference. DS pointed- so he got credit as a milestone. But he didn't check back with me to make certain I was following his point- he was thrilled to see the birds but with weak ToM (which doesn't really develop until closer to 4) he probably assumed I saw what he did and was just as excited. 


Sometimes you see kids around you son's age leading people by the hand to get needs met- almost as if the parent is an extension of the child. This is sometimes describes as using the parent as a tool. 


He is now great at greeting people and saying bye, but this was another thing that was specially focused on at one point. We also have taught him eye contact (though this one can still be hit or miss) His eye contact has always been good when playing or casual interactions. He doesn't make as good eye contact when requesting things or always when people are asking him things. This is something thats gotten better with direct teaching. He knows he doesn't get what he's asking for until he looks at you. Those are just a few examples of things and it reminded me of that when you mentioned learning the tests.


In education, that would be considered rote instruction. 


LOL, DS is better with greetings and such than his NT peers because his elementary school SLP and psych drilled deep around it. As a result, he can come off as quite poised. Older people, especially, find his good manners charming. 


The thing with rote instruction around so called prosocial skills is that they can teach a behavior- almost like etiquette, but they don't fully change how an autistic mind processes situation. Doing something because "it's a rule" of civilized behavior or because you don't get what you want otherwise isn't quite the same as when those skills are naturally hardwired. 

In terms of the classroom placement, I do side eye it as well. But from my child standpoint, I really want him to have the spot. We are moving in 4-5 months and I think keeping him here during that time is ideal as opposed to two transitions. I also think these teachers are still really good for them. I dont think they run into this situation too often where kids move into a "typical" spot. Also the school only has a toddler and preschool program. After that, kids end up somewhere else. The typical kids are actually pulled in mostly from the Childrens hospital employees. It functions as a daycare/preschool for hospital employees. They get a discount there. They do have to undergo a developmental screening with either one of the programs BCBAs or psychologists prior to starting. DS actually had to do this too even though they had just done all of their exit evaluations. They pull yet another psychologist from the center who was not familiar with him to do this. They did no formal testing, just observation. She noted that his expressive speech was a little behind, but would otherwise do well.

Since it's only 5 months or so, it is probably best to stick it out. But I like seriously side-eye the notion that a kid could "move into a typical spot" with an ASD dx. That isn't good for anyone. In creating an inclusion setting, there are fairly strict guidelines around percentages of NT kids before the setting starts to function as a sped setting and loses the supposed benefits of inclusion. At preschool, inclusion is generally held at no more than 50% on an IEP. In elementary, they hold the number at about 25-33%. Our district caps secondary inclusion at 10%. 

I will ask the Dev Pedi when we see him next what his thoughts are. We saw him last in September and he wasn't back tracking at that time. We are due to see him again in March so I will see what he says.

In terms of the disconnect between his PIQ and VIQ, this has been consistent among multiple examiners over time. The gap is actually smaller than it used to be. When first tested at 19 months, his VIQ was in the 60s (dont remember exact numbers) while his PIQ was mid 120s. People do continue to point this out, but do not really have anything else to say other than its odd.

It's more than odd. It's a real concern if this is something like WPPSI. Firstly because it is suggestive of some kind of differences like ASD and/or LD. But also because more than 2 std devs is considered by many to invalidate the test meaning the results aren't useful. For some kids on spectrum, as they approach school age, the PIQ starts to drop relative to peers for a couple years while the VIQ holds or might improve. Keep in mind that any score associated with an IQ test is +/- 15 points. Educators would consider 80 to be a range of 75-95. 


How many times had he done this? YMMV, but DS has sat WPPSI/WISC 3 times. And two of those were only for indie school applications.

Anyway, I think I will take an approach of careful watching for now. I think he has a reasonable plan in place. And you are right, more time will continue to make things clearer. I am not will to write the diagnosis off, but I am open to the idea that maybe was incorrect or will not impact him long term. I guess time will tell?


Time will tell. I try not to get too caught up in labels or even test results. Of the 3 boys I described earlier- the most "autistic" is the one enjoying the best outcome. While he's had a lot of interventions to help him thrive in the mainstream world, his brain is wired completely differently.