[RiverTam]

We got the results from the SIUC Center for Autism yesterday, and they weren't very helpful on the diagnosis front. They gave him a diagnosis of autism (not Asperger's. not PDD-NOS. Autism).

BUT... (and it's a really big "BUT") he did not register as having autism on the ADI-R (which is the parent interview.) He failed because he did not show social impairment with peers.

He had all kinds of autism symptoms on the ADOS, and scored well above the cut-off.

He does not have autism by the DSM-IV criteria because he misses the age of onset of symptoms, which is before age 3. (I don't think they believed me when I say he had no symptoms before age 3, but he didn't have symptoms before age 3. He was a normal toddler and used whole sentences by 18 months.)

He does not have autism by the DSM-V criteria because he has appropriate peer relationships. He has friends.

They're giving him an autism diagnosis, anyway. My impression is that they're dxing him as positive for autism because he scored pretty high on the ADOS, which just counts symptoms, and the two criteria he failed to meet (age of onset and presence of peer relationships) are based on parent report (which can't be trusted.)

I'm not convinced. He doesn't meet either DSM criteria, and some of those symptoms are muddled by the fact he's gifted. I'm really sure that my recollection of age of onset is correct. I know that he was a normal toddler. I'm really sure that this kid has friends and has an appropriate relationship with his little brother. We've seen a private practice psychologist and I think her diagnosis is probably more correct -- language disorder and gifted. (Our pediatrician agrees.) Autism is a disorder that has a triad of impairments -- impaired social interaction, impaired language, and restricted and repetitive behavior. He has good social interaction and gifted kids often show very focused interests in topics.

DH has stated the entire time that it's not an ASD. DH has an MS in clinical psychology (as well as a BSN) so he's qualified to make the DX.

We've been reading what we could find on dxing an ASD in a gifted kid, and everything we've read says to be very careful when dxing an ASD when the kid is also gifted, because some gifted behaviors can look like ASD behaviors.

We're back to where we started: treating the identified deficiencies and unsure about the label. We'll continue with speech therapy, and with karate and gymnastics, and using applied behavioral techniques.

 

[joensally]

How frustrating!

Interesting that he scored solidly on the ADOS. Is there a funding/resource advantage in having an ASD dx?

Have you considered seeing the Eides? That's who I'd trust with a complicated 2E child.

 

[Cherry_Blossom]

Diagnoses can be changed over time if they no longer fit. I am quite sure I could have been diagnosed with autism as a young child, but I outgrew a lot of it (not all of it). I was recently informally diagnosed with PDD-NOS by my counselor. When a person on the autism spectrum also has a high intelligence, it increases their ability to learn and adapt.

Every (autistic) person is unique. My friend's 5yo autistic DD has friends, plays games, makes eye contact, and shows affection. And she is most definitely autistic. Because she learned affection, she's indiscriminate with it and is overly friendly to strangers, and so needs to be protected. My 3yo DS is in the grey area of maybe Asperger's and gifted. He spoke in complete sentences by 15 months, but most of it was echolalia. He's not echolalic anymore, but he has a problem with interrupting and talking on and on about whatever he is thinking about, talking over other people who are trying to have a conversation about something else. He also has strong interests and trouble with transitions. But he likes playing with other kids and has friends (and enemies, hahaha), but also likes to play by himself. He hasn't been tested yet because his dad doesn't want him labelled, and is probably in denial. DS is also extremely intelligent; he's globally advanced by about two years. We also have a strong family history of autism, which is worth taking into account. So who knows? DS is one of those wildly intelligent, socially awkward kids, and may end up being difficult to diagnose.

From what I've read on the internet, the DSM criteria are going to be overhauled and re-written in the next edition, because so much new autism research has been done the last few years. Most professionals agree that the DSM autism criteria are not clear or reliable as it's currently written.

 

[RiverTam]

Quote:

Originally Posted by joensally

How frustrating!

Interesting that he scored solidly on the ADOS. Is there a funding/resource advantage in having an ASD dx?

Have you considered seeing the Eides? That's who I'd trust with a complicated 2E child.

I'd love to see the Eides, but the visit is $3000 (cash) and we'd need to spend about $1500 to get there. They're all the way across the country from us. We're seeing a psychologist locally who is a specialist in gifted issues.

There is an advantage in using the ASD diagnosis. In our state, insurance companies must pay for ASD treatment. They don't have to pay for any other developmental problems, and the MERLD diagnosis is excluded under our policy.

 

[Linda on the move]

Quote:

Originally Posted by EarthRootsStarSoul

From what I've read on the internet, the DSM criteria are going to be overhauled and re-written in the next edition, because so much new autism research has been done the last few years. Most professionals agree that the DSM autism criteria are not clear or reliable as it's currently written.

I wonder if this is the reason RiverTam's child was labeled the way he was. It sounds like the label is more accurate under what everyone believes will be in the next edition of the DSM.

My DD is 14 and her current main dx is Aspergers' but I reached a point a while back that I really don't care what her dx is as long as it gets her the services and accommodations she needs to reach her potential.

RiverTam, I'm curious what your son's main issues are, how old he is, and how he is currently educated. I think that high functioning kids on the spectrum can look a little different in different educational settings. We've homeschooling, traditional schooled, and alternative schooled with DD, and her issues looked very different in each context. Your answers on parent report section could be very different depending on this area of his life.

 

[RiverTam]

Quote:

Originally Posted by Linda on the move

I wonder if this is the reason RiverTam's child was labeled the way he was. It sounds like the label is more accurate under what everyone believes will be in the next edition of the DSM.

My DD is 14 and her current main dx is Aspergers' but I reached a point a while back that I really don't care what her dx is as long as it gets her the services and accommodations she needs to reach her potential.

RiverTam, I'm curious what your son's main issues are, how old he is, and how he is currently educated. I think that high functioning kids on the spectrum can look a little different in different educational settings. We've homeschooling, traditional schooled, and alternative schooled with DD, and her issues looked very different in each context. Your answers on parent report section could be very different depending on this area of his life.

He is currently in a private Montessori school, which was great for primary, bad for year 1 of lower elementary, good for year 2 (lower el), and bad for year 3 (lower el). We did an assessment at the end of year 1 with a psychologist and a pediatrician, who said not ASD, but that he has a language disorder. We did another assessment this summer, because the school asked.

I've seen him be very different in different settings. My kids attend a Catholic daycare in the summer and he is much better behaved there than he was at our Montessori school this year. I think it's the structure. The Catholic daycare has a pretty structured day and he gets through it without too much trouble. Montessori is very unstructured and he had a lot of problems with it this year.

This assessment was done at a university autism center, which was the fastest appointment we could get for an ADI and an ADOS. Our psychologist specializes in gifted issues, but isn't trained to give the ADOS.

I think he misses on current DSM standards for age of onset. I think he misses on the new DSM standards because he has significant, reciprocal relationships with peers and with non-caregivers. He has a best friend and other friends. He kissed a girl this year and another girl kissed him.

At the same time, you're right... the label doesn't matter that much. The interventions for both are the same. (speech therapy, CBT).

It would just be nice to have a clear answer. We're not going to get one, though.

 

[Linda on the move]

I'm sorry you aren't getting clarity. I know several kids on the spectrum (my DD is at an alternative school), and his social abilities sound they are in line with a typical child, not one on the spectrum.

Does he have sensory issues? Do they affect his behavior? I ask because you haven't mentioned it, and every kid I know of the spectrum has at least some sensory issues. For my DD they are intense and part of the key to figure out "good behavior."

peace

 

[RiverTam]

Quote:

Originally Posted by Linda on the move

I'm sorry you aren't getting clarity. I know several kids on the spectrum (my DD is at an alternative school), and his social abilities sound they are in line with a typical child, not one on the spectrum.

Does he have sensory issues? Do they affect his behavior? I ask because you haven't mentioned it, and every kid I know of the spectrum has at least some sensory issues. For my DD they are intense and part of the key to figure out "good behavior."

peace

He might have had some very mild sensory issues, but he's outgrown them. When he was a little kid, he put his hands over his ears when we went to an indoor pool because it was kind of loud, and he hated fireworks. No issues with food, and he'll eat anything. (He is actually pretty adventurous and always wants to try the weird food when we go out. Octopus salad? Shark steak? No problem.) No issues with clothes. No issues with crowded places. So he doesn't have a lot of sensory defensiveness. He isn't especially sensory seeking, either. He likes monkey bars, for example, but has a normal fear of climbing too high.

He is social, but awkward, so maybe it's HFA or Asperger's. I think we're going to be in a gray area of sort of spectrumy and sort of not spectrumy for now.

 

[Tigerle]

Hugs. I am sorry. What a weird situation to be in. Having watched DS growing into and grow out of symptoms again this year, I am beginning to think we don't really know the first thing about the connection between giftedness and autism.

As long as the diagnosis isn't hurting you child and may even help with services, I suppose the best plan is rolling with it. He may lose the label again, I shouldn't wonder. Most importantly, he will be okay. Quirky but okay, right?

 

[RiverTam]

Quirky but okay

Absolutely. He is going to be okay. Whatever is going on he has challenges, but he also has significant gifts. We're working to improve the challenge areas as much as possible, and we can capitalize on his strengths. He is okay and he will be okay.

 

[Linda on the move]

Is "non verbal learning disability" a dx that has been considered for him? I really don't understand this dx, but it must have some thing in common with the Asperger dx because some of my favorite books on Asperger's also discuss it.

 

[RiverTam]

Quote:

Originally Posted by Linda on the move

Is "non verbal learning disability" a dx that has been considered for him? I really don't understand this dx, but it must have some thing in common with the Asperger dx because some of my favorite books on Asperger's also discuss it.

It's a good thought, but that's not it. DS1 has very high non-verbal abilities (he hits the ceiling on the WISC) and weaker verbal abilities (normal range). It's not NVLD.

People with NVLD had high verbal abilities and weaker non-verbal abilities. It's pretty typical of people with Asperger's to show the same IQ profile (high verbal ability, less high non-verbal ability). People Asperger's don't always present that way, but it happens that way pretty frequently. An ASD is a triad of impairments -- 1) social skills, 2) verbal or nonverbal communication skills, and 3) repetitive and stereotyped activities. Kids with NVLD have a similar IQ profile to an ASD, but lack impairments across the board. It's considered to be part of the Broad Autism Phenotype, but people who have it don't always have an ASD, although they can have an ASD.

James Coplan has a useful chart that shows the relationship: http://www.psychologytoday.com/blog/making-sense-autistic-spectrum-disorders/201006/006-not-quite-autism-the-borderland-asd

DS might have Mixed Expressive Receptive Language Disorder, because he shows high non-verbal ability, and impaired verbal skills. It might be Semantic Pragmatic Disorder (which in the UK is considered by most to be High Functioning Autism, and not given as a separate label, but that's a debated topic.) Or it could just be High Functioning Autism.

I'd like a label to give to the school, so we can get services and some slack, but I'd like the label to make sense. I'm afraid if the label is autism, and we go to the public school, they're going to put him in an autistic classroom and not give him any gifted services. I'm afraid if the label is autism, a private school is going to say they won't take him because his needs are too great. (which they aren't but "autism" is a heavy label) I'm afraid if I don't use this label, he's going to feel alienated and never understand why he is different. I'm afraid if if I use the label, it will be wrong and I put something on him that isn't true. I'm afraid that if I use the label autism, I'm not going to be able to afford health insurance. (We make too much money to get help from social services.) .

 

[Linda on the move]

Quote:

Originally Posted by RiverTam

I'm afraid if the label is autism, and we go to the public school, they're going to put him in an autistic classroom and not give him any gifted services. I'm afraid if the label is autism, a private school is going to say they won't take him because his needs are too great. (which they aren't but "autism" is a heavy label).

That wasn't our experience in either situation.

In public school, DD was mainstreamed except for one period a day with the sp. ed. teacher. That period was mostly about communication with her other teachers and was, IMHO, very necessary for her to be successful and comfortable at school. If she would have been OK without it, they would have pulled her out in a heart beat.

Most high functioning kids on the spectrum ARE mainstreamed. Those autism only classrooms are freakishly expensive, and schools don't put kids there unless they have to. They are for kids with classic, profound autism. Most schools prefer to mainstream, even if the child needs an aid to be mainstreamed.

Second, my DD now attends a private school that is very open to kids on the spectrum, so much so that there are several kids at the school with Aspergers or PDD-NOS. There is a limit as to how profound a child's special needs can be and be met at the school, and they require a 3 day visit before admitting students to help figure out if they can meet the needs of a student.

I suspect that a school that was opposed to kids on the spectrum isn't a school where my DD would do well, without or without the dx. Would your son do OK in a school that expected all kids to be the same? To all be "perfect?"

 

[RiverTam]

Quote:

Originally Posted by Linda on the move

I suspect that a school that was opposed to kids on the spectrum isn't a school where my DD would do well, without or without the dx. Would your son do OK in a school that expected all kids to be the same? To all be "perfect?"

No. But right now it feels like there's no place for him. The Montessori classroom went badly this past year. We're being counseled against a public school placement because he is 2E. The two other secular private schools in our area state specifically that they don't take any special needs. My husband is opposed to Catholic school and I'm afraid DS would argue too much with the religious part of that curriculum. He would do well academically if he were home-schooled, but he needs the social interaction.

It makes my brain hurt. I'm going to have to pick one and have faith that it will all work out. I just need to get this kid to high school, and it will get better.

Thank you for talking me through this, BTW.

 

[LynnS6]

Who's cautioning you against the public school? Is it someone who knows your local public school? Or is it by reputation? I can't speak to your school, obviously, but it might be worth a visit to talk to the principal. Given how high functioning your son is, I highly doubt that he'd be put in a self-contained classroom. Remember that self-contained classrooms are expensive, and they also are not the least restrictive environment. Under IDEA, children need to be educated in the least restrictive environment that works for them, and so they will almost always try a child in a regular classroom with classroom support as needed. That support may range from extra attention from the teacher to a classroom aide.

Our son had a child on the spectrum in his classroom last year, and when I was in there, the child was fully integrated into everything. The only thing 'different' that the teacher did was to monitor slightly more closely during free form activities (art) and at other times. But then, he had to do this with 1/2 a dozen of the kids. "Brittney, put away your book, it's time to do art. Simon, it's time to sit in your chair. Emanuel, what are you supposed to be doing right now?" Can you tell me which of those 3 (made up names) was on the spectrum (only one was -- one was probably ADHD, one was gifted but socially awkward.) Now getting 'support as needed' is sometimes tricky as the schools will try as hard as they can not to spend extra $. My quirky kid has thrived at public school because our local public school is fairly strict, has excellent teachers, amazing positive discipline, and a decent program for his abilities. (I'm more worried about their ability to meet dd's needs because while she's not 2E, she's HIGHLY driven to do academic stuff.)

I know that your husband is worried about the religious aspect of the Catholic schools, but it might worth a visit to talk to the principal about what they do for religious education for children who are not Catholic. I have a friend who teaches in a Catholic school and a good 30-40% of their students are not Catholic (there's a high proportion of children of SE Asian immigrants, and Korean immigrants, plus other families who aren't immigrants but don't want the public school for one reason or another).

What about schools for other denominations? Again, a visit would be necessary. It's clear that your son does best in a more scheduled environment, so if you can find one like that, it would help.

Lutherans: http://www.lesastl.org/schools.html (note: Missouri Synod tends to be much more conservative and a bit more evangelical than Evangelical Lutheran Church in America, who range from moderate to quite liberal):

Episcopol: http://www.stmichaelschool.org/dyna/ (The Episcopol school where we live really caters to gifted kids, and it's very diverse in terms of religious backgrounds of the students).

Christian schools: http://www.usachurch.com/missouri/st_louis/schoolSearch.do;jsessionid=0DF9ABA391BBA52C13ED7E957D1069FA (Christian in quotes because they don't specify denominations - a quick glance shows that they range from Presbyterian to Evangelical)

 

[RiverTam]

Our psychologist said don't send him to a PS. Last week at the Autism Center, the counselor said don't send him to a PS. I talked to the retired gifted coordinator from the school and she said don't send him to the PS. The general position seems to be he won't get any enrichment in a public school classroom.

I'm no so sure. He does pretty well in a structured environment and looks way more normal when there is more structure. Our PS has 3 classrooms at his grade level, and I think he is more likely to find other gifted kids to hang with when there are more kids to choose from.

We are in one of the best school districts in our area, and it's considered to be pretty good. At the same time, the gifted education component is very limited. They don't do classroom differentiation and they've eliminated the gifted program due to budget and retirement of the gifted coordinator.

We're way out in the 'burbs. Catholic is the best religious school option in our area. The remaining choices go from sort of fundamentalist or evangelical (Baptist) to VERY fundamentalist (Missouri Synod or Pentecost). I'd love to have access to a Quaker school, but it ain't happening.

 

[LynnS6]

Quote:

Originally Posted by RiverTam

Our psychologist said don't send him to a PS. Last week at the Autism Center, the counselor said don't send him to a PS. I talked to the retired gifted coordinator from the school and she said don't send him to the PS. The general position seems to be he won't get any enrichment in a public school classroom.

I'm no so sure. He does pretty well in a structured environment and looks way more normal when there is more structure. Our PS has 3 classrooms at his grade level, and I think he is more likely to find other gifted kids to hang with when there are more kids to choose from.

Will he get enrichment in another kind of school? If he isn't going to get any enrichment at Montessori and he isn't going to get it at Catholic school, does it make sense to try the PS, given that you're in a 'good' district? You're right that it isn't an easy decision. The other thing to think about is what his areas of giftedness are -- if they're math/science, it's harder, IME, to find really good math teachers than it is to find really good reading teachers. I'd be tempted to go with the school that had the best teachers in the area of his strength, regardless of what kind it was.

FWIW, in my experience, religious schools don't usually have any more 'gifted' kids than regular schools. True, most of the kids there are a bit 'ahead' because they come from parents who invest a lot in education. But they aren't all gifted, and if there are fewer kids per grade level, it might be an issue for him finding a peer. So, I think asking about enrichment is a valid question for whichever school he goes to.

 

[Roar]

Quote:

Originally Posted by RiverTam

Our psychologist said don't send him to a PS. Last week at the Autism Center, the counselor said don't send him to a PS. I talked to the retired gifted coordinator from the school and she said don't send him to the PS. The general position seems to be he won't get any enrichment in a public school classroom.

Where do they think he should go to school?

Sorry, if I missed this earlier in the thread, but what are your social options if you homeschooled?

 

[RiverTam]

Quote:

Originally Posted by Roar

Where do they think he should go to school?

Sorry, if I missed this earlier in the thread, but what are your social options if you homeschooled?

We are being advised to keep him at the Montessori school where he has attended the last 4 years. I am extremely unhappy with the school, though. I don't trust them anymore. We had serious problems with a new classroom assistant who bullied him this past year, and they responded poorly. (She was fired at the end of the year, but we had 8 months of hell with that woman.)

My kids go to the Y and gymnastics and karate, but I want more social skills work for DS. We don't do church and we're not in team sports.

 

[RiverTam]

Quote:

Originally Posted by LynnS6

Will he get enrichment in another kind of school? If he isn't going to get any enrichment at Montessori and he isn't going to get it at Catholic school, does it make sense to try the PS, given that you're in a 'good' district?

Montessori is sort of weird. They have a broad curriculum and the kids are allowed to range far in it, but he hit the limits of his interest in it this year. They're allowed to work at their level, which is great for gifted kids who can handle the Montessori structure. (Or lack of structure.)

Math. His strengths are math and science.

Thank you for your input. You have some good points and are helping me think this through.