Anyone get a second opinion for ASD child and was the outcome different?

[Anonymous]

Some of the results in the neuropsych exam we got recently were not consistent with our observations and what we've been hearing from other specialists and therapists over the year and we'd like to seek a second opinion. We don't want to start on the long, expensive and time-consuming path down more therapies for DC's issues if the exam was off somehow.

Wondering if any of you have done this more than once in a short period of time and whether the second opinion was very different than the first? What did you ultimately do with the conflicting results? Did you get a third opinion or go with your gut about which assessment to follow? Would appreciate any specifics about how to go about doing this. Also, do you tell the person giving you the second opinion what the first opinion was? I assume we would want to tell them we had a previous exam but I don't really want to bias the results by giving too many details.

[Anonymous]

We had three evaluations within a 3 month period mostly due to scheduling: The school did a psychoeducational evaluation. We saw a developmental pediatrician, Dr. Shapiro, who does school observations and Children's Center for Autism Spectrum Disorders (CCASD) called us after about 6 months of being on the waitlist. CCASD does ADOS/ADR-I testing.

We had not suspected that DC had any issues, none, until his preschool teacher suggested an evaluation was in order b/c DS would not engage with his peers.

All the evaluations diagnosed DC with ASD/Asperger's. All of them came out around the same time so we could not tell the evaluator what were the results of the other evals.

We also had a private neuropsych evaluation done 2 yrs later which also diagnosed DS with ASD/Asperger's.

So we are four for four...

[Anonymous]

11:09 again. I should add that DS has an IEP and gets all his therapies, OT, Social Skills, etc. at school. He is completely mainstreamed at a language immersion school. Does well academically and socially, has friends and is a full participant. No behavioral issues. Loves school.

Having a diagnosis and IEP has been great for DS.

[Anonymous]

Especially for something as broad as ASD, you should get therapy/interventions for the behaviors/skills that are problems at home or at school. So if the neuro-psych identified issues that you/teachers/therapists don't see, then no need for either more therapies or a second opinion.

Our experience was one psychoeducational testing identified possible ASD, but with caveats that DC might just be a late bloomer. Almost 3 years later, after lots of therapy, we did a full neuro-psych that definitively identified ASD. But we are targetting the things that are actually issues for our specific child, not getting therapies that are just generally recommended.

[Anonymous]

I know literally dozens of kids with language disorders who were misdiagnosed with autism. Parents had a strong gut feeling that what they were dealing with wasn't autism, so got a second opinion. Schools were normally the ones pushing for autism.

[Anonymous]

Anonymous wrote:

I know literally dozens of kids with language disorders who were misdiagnosed with autism. Parents had a strong gut feeling that what they were dealing with wasn't autism, so got a second opinion. Schools were normally the ones pushing for autism.

Not the OP, but can you provide any recommendations for therapists who are skilled and helping with the language disorders that present similarly to ASD? I'm in this situation with my DS. He officially has the ASD diagnosis, but there's a lot of disagreement among his various clinicians regarding whether he'truly has ASD, vs language issues.

[Anonymous]

Dr. Stephen Camarata at Vanderbilt, or his wife Mary Camarata at the Late Talkers Foundation. He has a book coming out in a few weeks.

There's another thread on him. A lot of folks from around here have made the trip to Tennessee.

[Anonymous]

http://www.dcurbanmom.com/jforum/posts/list/113052.page

[Anonymous]

Anonymous wrote:

I know literally dozens of kids with language disorders who were misdiagnosed with autism. Parents had a strong gut feeling that what they were dealing with wasn't autism, so got a second opinion. Schools were normally the ones pushing for autism.

Well, autism is a category that under state law gets you services, whereas "language disorder" doesn't. But you only get the services you qualify for, so I'm not sure why it matters terribly.

[Anonymous]

The diagnosis matters in terms of how the issues are managed. With a diagnosis of ASD, ABA therapy might be recommended, but wouldn't be very helpful if the problems were due to a language disorder.

[Anonymous]

DS has been diagnosed with ASD and with MERLD and with semantic pragmatic language disorder. The first two are exclusive of each other. We have used the MERLD diagnosis for his IEP because we want to use the least severe DX that we can use. It also seemed like the most likely DX just based on our observations of him at home.

We focused on treating the language issues and the social skills issues. Ironically, as his language improved, he started looking more autistic. The other autism symptoms really came out as he got older.

I now think that an ASD is probably the right label for him, but DH doesn't agree.

[Anonymous]

I've heard of diagnosis being different for kids who were evaluated at a young age. If you do chose to get another evaluation you should definitely tell the other practitioners because some tests are not supposed to be repeated within a certain time frame otherwise the results are considered invalid. I would still treat the area of need - like speech therapy for language needs for example or social skills since kids with a variety of diagnosis needs those types of therapies.

[Anonymous]

Not full blown ASD but PDD. DS was 5. Very social, super popular at school but had impulse control issues as well as attention. Also wasn't good with personal space...i.e., keeping his hands to himself was challenging for him.

Tester said he was a "mystery" in that they couldn't get a clear read on too much with regards to IQ and some other components of the neuro-psych eval - so he slapped on the label of ADHD/Inattentive type at risk for reading and math disorder. and one teenie tiny line in the 40 page report that said PDD. We were shocked, I mean floored!! ADHD yes,, but not PDD.

I took that report to Kennedy Krieger to one of their developmental peds who basically laughed at the notion that DS was anywhere on the spectrum.

My gut told me to trust the developmental pediatrician at Hopkins over the psych who did none NONE of the testing. he farmed it out to another person who did all the testing and she basically gave him "her results" to interpret.

He's in Chevy Chase BTW...in case any of you are considering using him. total joke and waste of money.

[Anonymous]

Anonymous wrote:The diagnosis matters in terms of how the issues are managed. With a diagnosis of ASD, ABA therapy might be recommended, but wouldn't be very helpful if the problems were due to a language disorder.

You might have behavioral therapy recommend to you which if very similar to ABA. ABA is recommended exclusively for kids who are ASD; it can be useful for many kids with communication deficits.

[Anonymous]

Anonymous wrote:I've heard of diagnosis being different for kids who were evaluated at a young age. If you do chose to get another evaluation you should definitely tell the other practitioners because some tests are not supposed to be repeated within a certain time frame otherwise the results are considered invalid. I would still treat the area of need - like speech therapy for language needs for example or social skills since kids with a variety of diagnosis needs those types of therapies.

I agree with this. Some young children present with markers for autism, but within a few years and speech therapy, they are not categorized as autistic and the diagnosis is more specific to what's actually present.