My daughter just turned 6. She is likely to be mildly gifted (both by IQ and academic achievement testing as well as everyone's comments). Per her psychologist (evaluated her using ADIR and ADOS), she also has a lot of features for Autistic Spectrum Disorder/Aspergers/Pervasive Developmental Delay. But, she did not meet all the criteria in the assessment. I think that's because she's 'gifted' and has been under intervention for 'developmental delay' and… read more
My son is both gifted and on the spectrum. We lucked out with a diagnosis and the Dr. told us so. We had two things going for us. 1. my middle son had previously been diagnosed by the same Dr. leaving a family history and 2. Just days before our appointment the Dr. had seen a child he had misdiagnosed years before. The child presented just like my son and was originally diagnosed as mixed conduct/mood disorder just like your daughter. After many years of therapy our Dr. said it became obvious that he had misdiagnosed the child. With this being fresh in the Dr.s mind he wasn't about to make the same mistake twice.
My son makes friends easily but has trouble keeping friends. He is better with adults or children much younger than he is. He is able to mask his problems/differences when out in public 95% of the time but that leads to full blown melt-downs once we are home. He presents like a very intelligent adult and a toddler all at the same time. He uses his high IQ and memorizes routines that make him appear normal but when these routines are deviated he doesn't know what to do. At times I think it's actually easier on my middle son (classic Autism) because he is different and totally unaware that he is different yet my older son is different and strives to be normal to fit in.
Our son got a high-ish score on ADOS, but he was only 3. After 1.5 years and some very helpful ABA tutoring I don't know that he'd score high anymore, at least on that same module. Also the way our school did the ADOS was with many strangers in the room and no rapport-building or anything first.
I think an important piece of information about the ADOS is that scores drop over time. There are several "modules" for different developmental levels, but each one covers a long developmental window. If you give the same module to the same kid every year, their score will keep going down.
Autism is defined by *delay* in social development, not *absence*.
There's also an often-made argument that ADOS (along with other diagnostic tools) are more sensitive to finding autism in boys. And ADOS is not entirely objective, there's judgment involved.
To see how ADOS scores change over time, here's a paper that attempts to correlate them with "severity": http://www.ncbi.nlm.nih.gov/pmc/articles/PMC292...
Here's a paper about autism trajectories: http://pediatrics.aappublications.org/content/e...
It took us 6 months to go through the diagnostic process and the whole time our son was making huge strides - which is fantastic, but we were worried about him crossing the line from diagnosable to not and then not getting any help - which he still needed.
Our school and autism center both did a comprehensive assessment; ADOS, parent and teacher surveys, interviews, cognitive and language assessments.
The school also went and watched him in his preschool and saw him not playing with any kids.
We had to go to the autism center not just school because they had the PhD psych for insurance.
I read a lot and wrote down a lot of details for the diagnostic team; I told them for example that our son was really good at handling situations through rote memory and "scripts," but they shouldn't confuse that with a generalized skill. As I read different things I tried to note down what applied to our son and then bring those up. We really handed them the whole picture and rationale in writing in advance.
Our son is affectionate and attention-seeking, so for example we told the team about that, but talked about the lack of interaction skill and social perception, and how it was only with adults.
Books on "aspergers" or "HFA" describe what the "border zone" of autism can look like.
Autism is probably a continuum with not-autism, so it's very possible to be 98th percentile social difficulty, to be "autistic" you have to be 99th, but of course kids at 98 are still having a very hard time. :-( which is why insurance should cover needs not diagnostic labels.
Maybe emphasize where your daughter's having real practical trouble in life and try to find a diagnostician who will consider history / effects of intervention / differences in girls ... :-/ but there may be a big element of luck :-/
@A MyAutismTeam Member Both my sons were diagnosed by Dr. Frank Kirchner. He works with Hampton Roads Behavioral Health ( http://www.hrbhgroup.com/ ) and is a pediatric psychiatrist. The testing started with an 1 1/2 hour interview of the entire family. Although most questions were directed at my husband and I (developmental history including prenatal and birth) you could tell Dr. Kirchner was taking in Logan's every move. He would occasionally ask Logan questions. He also consulted Logan's IQ (160) and academic scores (at the time he was up for retention.) At that time my son received a PDD-NOS diagnosis with highly suspected Aspergers. Dr. Kirchner immediately scheduled the ADOS to be done the following week and after that was when he received the Aspergers label. At the time of testing my son had received speech therapy from the age of 3 and play therapy from the age of 4. He received other unofficial therapies as need arised from my husband and myself as we are both teachers of children with autism. We are a very social/ active family. My son has always made friends easily but always had trouble keeping friends. He does not read social cues and never has. He presents as an adult and toddler all wrapped into one. He has always thrown major tantrums/melt downs. He doesn't stick out in a crowd like my middle son does but if you closely observe him he is very different and always has been. He has always been very aggressive but can control it in public.
I was told for years my daughter was to smart to be on the spectrum ummm sorry but that is why a child is on the spectrum they use more of their brain then we do.
We are in Asheville, NC, the school district is Asheville City http://www.ashevillecityschools.net/pages/Ashev... and the local center is TEACCH http://teacch.com/clinical-services/initial-con...
TEACCH tried to use the school's results so they used different assessments than they usually do. Usually both school and TEACCH would do ADOS but TEACCH used CARS instead since they had the school ADOS result. They both did a parent survey and teacher survey (two different flavors of SRS I think). School did Weschler and language assessment, and motor skills assessment. TEACCH did PEP-3 profile. TEACCH did ADI-R parent interview. School observed our son in preschool. School had a speech therapist, Masters-degree psych, and occupational therapist. TEACCH had a PhD psychologist and some sort of assistants (grad students?).
I also remembered two books about "twice exceptional" kids if you haven't seen them, "Bright not Broken" and "Misdiagnosis and dual diagnoses of gifted children." I remember liking one of them a lot more than the other but I forget which one! :-(
Another useful book is called "Quirky Kids: understanding and helping your child who doesn't fit in" and it's by a couple of pediatricians who don't take the diagnostic labels too seriously (sadly insurance companies don't share this pragmatic view). But it maybe talks a bit about the issue of kids who are clearly a little quirky but the professionals can't quite decide what to label them or how to help.