best place for second opinion on ASD diagnosis?

[Anonymous]

Anonymous wrote:

Anonymous wrote:
We used the information they gave us to fight for our kid.

Could you explain in more detail how the information the Camaratas gave you helped you fight for your kid.

The school likely said their kid had autism or was cognitively impaired.

[Anonymous]

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Anonymous wrote:OP, can you say where you DD was evaluated? Because it may be a fancy children's hospital, but that doesn't mean its one of the top places for autism assessment.

You need another ADOS with someone experienced with toddlers and who will also take into account videos of your DD if you think her behavior will be very different with the testers. You said you were considering the Camaratas; why not instead go to one of the actual autism clinics at Vanderbilt? They have a clinic for very young kids that might be worth checking out?

www.childrenshospitalvanderbilt.org/clinic/autism-clinic-children-under-3

If the concern is language, they are best off with the Camarata's. Its an easy trip and even private pay, its far cheaper than an evaluation here.

Her concern is getting a second opinion autism evaluation; so should be an autism clinic.

No, you don't want an autism clinic. You want a place that does a differential diagnosis. Look at the earlier stat of the places that diagnose almost everyone that walks through their does with autism.

Our local children's hospital that evaluates for autism only gives an autism diagnosis about 40 percent of the time. That's because they are doing a differential diagnosis, which is the gold standard.

Agreed, but ideally any autism clinic doing evaluations would give a differential diagnosis! I can believe that some are more rigorous than others; which is why it would be GREAT to tell OP the name of your clinic; or if not, the way you discerned that they did a good job.

My son was evaluated at 2.5 by a developmental pediatrician for about 1 hour and left with an ASD diagnosis. I went there for guidance and suggestions and left with a diagnosis. There was no differential diagnosis, it was simply "checking the boxes". My son does have symptoms of ASD, however, there are other factors such as hearing loss that were not factored in at all. With that being said, all providers and clinics are not the same. Trust your gut, do your research and get second opinions.

At least you got an hour. We had about 45 minutes with a developmental ped who barely interacted with my son

I wonder if it was the same provider. Do you mind saying who your son saw?

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:OP, can you say where you DD was evaluated? Because it may be a fancy children's hospital, but that doesn't mean its one of the top places for autism assessment.

You need another ADOS with someone experienced with toddlers and who will also take into account videos of your DD if you think her behavior will be very different with the testers. You said you were considering the Camaratas; why not instead go to one of the actual autism clinics at Vanderbilt? They have a clinic for very young kids that might be worth checking out?

www.childrenshospitalvanderbilt.org/clinic/autism-clinic-children-under-3

If the concern is language, they are best off with the Camarata's. Its an easy trip and even private pay, its far cheaper than an evaluation here.

Her concern is getting a second opinion autism evaluation; so should be an autism clinic.

No, you don't want an autism clinic. You want a place that does a differential diagnosis. Look at the earlier stat of the places that diagnose almost everyone that walks through their does with autism.

Our local children's hospital that evaluates for autism only gives an autism diagnosis about 40 percent of the time. That's because they are doing a differential diagnosis, which is the gold standard.

Agreed, but ideally any autism clinic doing evaluations would give a differential diagnosis! I can believe that some are more rigorous than others; which is why it would be GREAT to tell OP the name of your clinic; or if not, the way you discerned that they did a good job.

My son was evaluated at 2.5 by a developmental pediatrician for about 1 hour and left with an ASD diagnosis. I went there for guidance and suggestions and left with a diagnosis. There was no differential diagnosis, it was simply "checking the boxes". My son does have symptoms of ASD, however, there are other factors such as hearing loss that were not factored in at all. With that being said, all providers and clinics are not the same. Trust your gut, do your research and get second opinions.

That’s not a good developmental pediatrician. They are supposed to see your child several times a year and for as long as the child needs it (which might be through age 18) , offering advice to the parent as to what services to use or what activities or school programs might be helpful for the child. It’s not supposed to be a short term evaluation experience.

[Anonymous]

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Anonymous wrote:^So I see OP's DD did have ADOS and it wasn't just the inexperienced developmental pediatrician who diagnosed ASD as stated on the first post.

Go see the Camarata's if you wish... it's a journey.

ADOS with an inexperienced tester can lead to a wrong diagnosis.

Developmental pediatrician. Camarata’s are good for a nonverbal IQ year and that’s pretty much it.
There’s no follow up or any kind of support from them. Take your child to a good dev ped regularly.
They will have recommendations for you.

Not our experience at all with the Camaratas. They conferenced in our IEPs, gave us a strategic plan of action, etc.

OP you can also schedule a phone conference with Mary. I know several people who have done this and to a person they were all happy they did.

A lot of DCUM posters have complained that they don't give the extended support and individual attention the way they used to. Personally, I think that follow-up is very important. No matter how skilled they are, I still want someone who continue to provide support as needed.

I personally called and emailed Mary and Stephen for the better part of six months and I received no reply. After six months Mary called and said that they are a ‘busy clinic and that they don’t offer any ongoing support’. I regret wasting a year plus of my son’s developmental life listening to what they told me to do with him. It did not help him and we needed more support and we didn’t get it. If you think that you need anything except a one time report one in your child’s life I would not spend the money and time to go there.

Dr. Camarata does not respond which is frustrating. You have to go through the clinic/his secretary to book an appointment. You don't go directly to him. We needed a one time report but only got raw numbers. He does not write his own reports and works with another SLP (clinic chooses) and she was terrible.

Mary does return calls eventually but you have to call many times. She needs a secretary or help but she doesn't charge a huge amount and probably cannot afford to pay for help in less she increased her rates.

They are good for one time-in person help. Years ago I think they were very active but they have branched out with books and other things and are not really child/patient based anymore.

You’re talking probably 20-25 years ago here.

[Anonymous]

My current 34 months son has been seen & evaluated by a developmental psychologist & also a developmental pediatrician from children hospital since last year summer. Still, no one has given him ASD diagnosis yet even though they are suspicious of it.

Each evaluation is ranged from 1 hour to 3 hours. He has severe expressive delays, not awesome eye contact, some flagging hands/tiptoe walking, loves abc/numbers/shapes/colors, loves to play with kids/adults, and also he does not understand personal boundaries (too friendly to strangers). No one can give diagnosis yet because he could be just a normal kid with some delays, per professionals.

Even though everyone (his daycare teachers, speech therapists, pediatrician & friends/family) say he is not ASD, but we still keep seeing them every couple months for evaluation. He is on the waiting list for ADOS test now, could be a year of waiting. We will see how it goes. Someone tell me that it is difficult to give ASD diagnosis to a young kid unless the symptoms are really obvious or just like the textbooks ones.

[Anonymous]

Anonymous wrote:My current 34 months son has been seen & evaluated by a developmental psychologist & also a developmental pediatrician from children hospital since last year summer. Still, no one has given him ASD diagnosis yet even though they are suspicious of it.

Each evaluation is ranged from 1 hour to 3 hours. He has severe expressive delays, not awesome eye contact, some flagging hands/tiptoe walking, loves abc/numbers/shapes/colors, loves to play with kids/adults, and also he does not understand personal boundaries (too friendly to strangers). No one can give diagnosis yet because he could be just a normal kid with some delays, per professionals.

Even though everyone (his daycare teachers, speech therapists, pediatrician & friends/family) say he is not ASD, but we still keep seeing them every couple months for evaluation. He is on the waiting list for ADOS test now, could be a year of waiting. We will see how it goes. Someone tell me that it is difficult to give ASD diagnosis to a young kid unless the symptoms are really obvious or just like the textbooks ones.

It is in fact difficult to diagnose ASD in young children. The main thing to do now is treat the symptoms.

[Anonymous]

Anonymous wrote:My current 34 months son has been seen & evaluated by a developmental psychologist & also a developmental pediatrician from children hospital since last year summer. Still, no one has given him ASD diagnosis yet even though they are suspicious of it.

Each evaluation is ranged from 1 hour to 3 hours. He has severe expressive delays, not awesome eye contact, some flagging hands/tiptoe walking, loves abc/numbers/shapes/colors, loves to play with kids/adults, and also he does not understand personal boundaries (too friendly to strangers). No one can give diagnosis yet because he could be just a normal kid with some delays, per professionals.

Even though everyone (his daycare teachers, speech therapists, pediatrician & friends/family) say he is not ASD, but we still keep seeing them every couple months for evaluation. He is on the waiting list for ADOS test now, could be a year of waiting. We will see how it goes. Someone tell me that it is difficult to give ASD diagnosis to a young kid unless the symptoms are really obvious or just like the textbooks ones.

PP here. Forgot to mention that both professionals comment that he is too social & affectionate (loves to give hugs, hold hands, grab strangers legs) even to selective strangers in a new environment. He smiles & laugh all the time, feeling comfortable & not feeling nervous at all in a new environment surrounded by strangers as long as he can play. He enjoys companies, and love to interact with others (kids & adults) & super good in pretend-play. They are concerned the most is he is too affectionate to strangers, and his 11 daycare kids' parents are all hugged by him already within the first 2 weeks. Even the daycare administration knows who he is because he loves to visit them daily at drop off/pick up.

[Anonymous]

Anonymous wrote:

Anonymous wrote:My current 34 months son has been seen & evaluated by a developmental psychologist & also a developmental pediatrician from children hospital since last year summer. Still, no one has given him ASD diagnosis yet even though they are suspicious of it.

Each evaluation is ranged from 1 hour to 3 hours. He has severe expressive delays, not awesome eye contact, some flagging hands/tiptoe walking, loves abc/numbers/shapes/colors, loves to play with kids/adults, and also he does not understand personal boundaries (too friendly to strangers). No one can give diagnosis yet because he could be just a normal kid with some delays, per professionals.

Even though everyone (his daycare teachers, speech therapists, pediatrician & friends/family) say he is not ASD, but we still keep seeing them every couple months for evaluation. He is on the waiting list for ADOS test now, could be a year of waiting. We will see how it goes. Someone tell me that it is difficult to give ASD diagnosis to a young kid unless the symptoms are really obvious or just like the textbooks ones.

PP here. Forgot to mention that both professionals comment that he is too social & affectionate (loves to give hugs, hold hands, grab strangers legs) even to selective strangers in a new environment. He smiles & laugh all the time, feeling comfortable & not feeling nervous at all in a new environment surrounded by strangers as long as he can play. He enjoys companies, and love to interact with others (kids & adults) & super good in pretend-play. They are concerned the most is he is too affectionate to strangers, and his 11 daycare kids' parents are all hugged by him already within the first 2 weeks. Even the daycare administration knows who he is because he loves to visit them daily at drop off/pick up.

sounds like a great kid the concern about being "too affectionate" is likely that he doesn't understand "normal" social boundaries - which could be a sign of social delays. Things will become much more clear over the next 2 years as you can see how he's developing and what kind of support (if any) he needs to be in a regular classroom. In the meantime, one of the best things as a parent you can do is spend a lot of time observing how he interacts with other children, and how other children interact with each other. in my experience 3 can be a really hard age to discern what's going on, because all the kids have some areas where they're still babies. by 5-6 you can see much more of what an "average" kid looks like.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:
We used the information they gave us to fight for our kid.

Could you explain in more detail how the information the Camaratas gave you helped you fight for your kid.

The school likely said their kid had autism or was cognitively impaired.

PP here. Both, actually. Our current district decided our son was autistic without actually ever doing the testing and would keep us in IEPs for hours trying to convince us to let them "test" him (they had already made up their minds) so they could put him in their autism program, which was basically glorified babysitting. Ironically, we discovered when we went through his school records that his previous public preschool had tested him for autism without our knowledge -- and it came up in the non-autistic range. Neither district ever told us this as it did not fit their agenda.

They were doing this to other parents as well, and we found out when all the kids hit the same middle school that the kids who went into the autism program were massively behind where my kid was. It was Dr. Camarata who told the IEP team that they should provide the data on how many kids made it out of the segregated autism program into gen ed. The team got real quiet then and dropped the fight. The three times we had Dr. Camarata conference in on IEPs were really different experiences than when we were on our own. But having all the information of my son's social scores and his nonverbal IQ led us to fight the good fight at every IEP.

One of the Camaratas big points that not only was our son not autistic, he was also not cognitively impaired and therefore needed access to the gen ed curriculum. We had followup testing from a different provider and then with the school district itself that verified my son has a typical nonverbal IQ.

There are some parents whose children didn't have language delays who always chime in on these threads. Having a child with a receptive language disorder is a very different journey.

Schools don't understand language kids. They just dump them in special education and call it a day unless you are vigilant. My son is in high school now, passing grade level classes. He's not the best student because his poor receptive language, but he's learning and progressing. He has had some special ed classes, and they seem to do little in there. There are no tests, books or curriculum.

OP, if you look at the stats, the younger they try to diagnose autism, the more often they are wrong. Below age 2 the accuracy is incredibly off. I'd trust your instincts. For now, you can just think about what your child needs and work on that. Have her retested at 3 or above. Tests are so much more accurate then. But always, always, vet the person or clinic first. Ask if they do a differential diagnosis. Ask how often the diagnose autism.

[Anonymous]

Anonymous wrote:But always, always, vet the person or clinic first. Ask if they do a differential diagnosis. Ask how often the diagnose autism.

NP. In practical terms, how do you do this? Who do I talk to? I'm imagining what usually happens when I call Childrens for anything . . . .