best place for second opinion on ASD diagnosis?

[Anonymous]

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.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:The OP's post mentions one of the huge issues around an ASD diagnosis in this country -- money. There is an industry now that makes money off of an autism diagnosis, particularly in states where laws require coverage of speech therapy and ABA once an ASD diagnosis is made.

Just look at all the posters saying to keep the diagnosis for the free therapies!

The issue isn't that kids with autism who live in certain states get therapies covered, it's that kids with very similar symptoms don't.

The reality is that diagnosing a child with developmental issues, especially this young, isn't an exact science. Diagnoses like ASD, ADHD, Social Communication Disorder, and Language Delay and continuous, and there's a lot of gray areas. Two highly skilled and qualified examiners can look at the same kid on different days and come up with different labels, and neither is wrong, they're just seeing slightly different views of the same picture and choosing slightly different words to describe it. Unless OP is very wealthy, a diagnosis is needed so that therapies will paid for, but the current ASD diagnosis will serve that purpose.

Putting a child through multiple rounds of testing, at this age, isn't helpful. What is helpful is watching how they grow, and what they respond to, and then increasing the time spent on things that they respond well to, whether that's inclusive preschool, or ABA, or speech therapy with Jane, or whatever. In OP's case, it seems that OP does know what's working for her daughter, and that ABA isn't working. If nothing was working, then more testing might make sense.

In a few years, diagnosis will be much easier, and the results are much more helpful in making educational plans. Revisiting the question then makes sense. It does sound like it's possible that down the road a diagnosis other than ASD, or even no diagnosis might make sense. Or it might be that new symptoms will emerge and an ASD diagnosis will continue to be the best fit. But even if OP had her daughter retested this year, she'd still need to do that testing too.

I dunno. There is so much hype about ABA and early intervention for autism, that certain kinds of parents (raises hand!) would have difficulty not going all-out with therapies if a child got an autism diagnosis. Therapies are tested and evidenced-based for specific diagnoses, despite what people say about it here. I think OP is exactly right to be seeking out information that will help guide her efforts and not waste time/money/energy. Even if it's just finding a clinician who can help with a game plan for a child whose condition is unclear and may be for a while.

Early treatment is indicated for all children regardless of diagnosis. My.kid was born premature. Because so many conditions can show up early, the state paid for followup evaluations. My kid had motor delays, not particularly serious, nonetheless the state paid for PT to prevent or mitigate potential future problems. You shouldn't need a diagnosis that early, just a noticable delay.

ABA is a separate issue. It is evidence-based, but the original research was do on kids under old diagnostic categories(i.e. they would be considered very severe today) and for 40 hours a week by well-trained researchers. It's not practical to have a highly trained expert work with one kid full time for years. So now have fewer hours using less trained people on kids different from the original population. It doesn't seem to work as well in the real world. But the ABA providers seem to have captured the market at the expense of other approaches.

Maybe, but you don't just give kids all therapies at all levels of intensities. Your viewpoint ("EI at all costs" thing) is PRECISELY why in OP's position I would be very aggressive about getting a second opinion and working with a doctor who can quarterback the therapies in light of the child's ambiguous diagnosis.

I am not the poster who said I would give my kid all therapies at all levels. I am the one who said look for areas of deficit and apply therapies there. Which is exactly what happened with my kid and solely because my kid was at high risk for delays due to being a premie. Which is the same as OP's situation.

If your kid is not a premie, but you notice a delay, gwt an evaluation, and if necessary.provide therapies. Be less concerned about diagnosis, which can change and apply APPROPRIATE therapies. If the therapy is not helping, stop it.

And yes, a good quarterback can certaintly help guide you.

Yeah, but how do you "look for deficits"? In great part, based on the results of diagnostics. If a child is diagnosed with ASD, by definition they have deficits in social skills. That's why you should always see a correct diagnosis; or if it's fuzzy or unstable, work with a professional who is willing to admit that.

There are milestones for social, behavioral, cognitive and physical development. If your child performs well below average for her developmental age, then an intervention may be warranted. There may or may not be a diagnosis associated with it. It may simply be a delay and the child can use some assistance to catch up. For a premie, subtract weeks early from actual age to get developmental age.

So you think people self-diagnose based on CDC milestone charts? That's not how it works.

[Anonymous]

Anonymous wrote:

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.

OP said that the dev ped was inexperienced but since she was at a well regarded Children's hospital in her area, it is doubtful whoever administered the ADOS/ADI-R was also inexperienced. What say you, OP?

When we got ADOS done at Children's Center for Autism Spectrum Disorders here, ADOS/ADI-R was what these evaluators did every day and they were very experienced: ADOS is done in teams with a neuropsych and SLP who both get additional training for administering ADOS.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

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.

OP said that the dev ped was inexperienced but since she was at a well regarded Children's hospital in her area, it is doubtful whoever administered the ADOS/ADI-R was also inexperienced. What say you, OP?

When we got ADOS done at Children's Center for Autism Spectrum Disorders here, ADOS/ADI-R was what these evaluators did every day and they were very experienced: ADOS is done in teams with a neuropsych and SLP who both get additional training for administering ADOS.

I don't think we need to grill OP for the details. Doctors misdiagnose things ALL THE TIME -- things that are much easier to diagnose than autism in a former preemie toddler with a speech delay. OP needs a full-on second autism evaluation/second opinion at another hospital, with a team that will take into account her observations and observe her child in multiple settings. OP maybe take a bunch of videos to show her development?

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:The OP's post mentions one of the huge issues around an ASD diagnosis in this country -- money. There is an industry now that makes money off of an autism diagnosis, particularly in states where laws require coverage of speech therapy and ABA once an ASD diagnosis is made.

Just look at all the posters saying to keep the diagnosis for the free therapies!

The issue isn't that kids with autism who live in certain states get therapies covered, it's that kids with very similar symptoms don't.

The reality is that diagnosing a child with developmental issues, especially this young, isn't an exact science. Diagnoses like ASD, ADHD, Social Communication Disorder, and Language Delay and continuous, and there's a lot of gray areas. Two highly skilled and qualified examiners can look at the same kid on different days and come up with different labels, and neither is wrong, they're just seeing slightly different views of the same picture and choosing slightly different words to describe it. Unless OP is very wealthy, a diagnosis is needed so that therapies will paid for, but the current ASD diagnosis will serve that purpose.

Putting a child through multiple rounds of testing, at this age, isn't helpful. What is helpful is watching how they grow, and what they respond to, and then increasing the time spent on things that they respond well to, whether that's inclusive preschool, or ABA, or speech therapy with Jane, or whatever. In OP's case, it seems that OP does know what's working for her daughter, and that ABA isn't working. If nothing was working, then more testing might make sense.

In a few years, diagnosis will be much easier, and the results are much more helpful in making educational plans. Revisiting the question then makes sense. It does sound like it's possible that down the road a diagnosis other than ASD, or even no diagnosis might make sense. Or it might be that new symptoms will emerge and an ASD diagnosis will continue to be the best fit. But even if OP had her daughter retested this year, she'd still need to do that testing too.

I dunno. There is so much hype about ABA and early intervention for autism, that certain kinds of parents (raises hand!) would have difficulty not going all-out with therapies if a child got an autism diagnosis. Therapies are tested and evidenced-based for specific diagnoses, despite what people say about it here. I think OP is exactly right to be seeking out information that will help guide her efforts and not waste time/money/energy. Even if it's just finding a clinician who can help with a game plan for a child whose condition is unclear and may be for a while.

Early treatment is indicated for all children regardless of diagnosis. My.kid was born premature. Because so many conditions can show up early, the state paid for followup evaluations. My kid had motor delays, not particularly serious, nonetheless the state paid for PT to prevent or mitigate potential future problems. You shouldn't need a diagnosis that early, just a noticable delay.

ABA is a separate issue. It is evidence-based, but the original research was do on kids under old diagnostic categories(i.e. they would be considered very severe today) and for 40 hours a week by well-trained researchers. It's not practical to have a highly trained expert work with one kid full time for years. So now have fewer hours using less trained people on kids different from the original population. It doesn't seem to work as well in the real world. But the ABA providers seem to have captured the market at the expense of other approaches.

Maybe, but you don't just give kids all therapies at all levels of intensities. Your viewpoint ("EI at all costs" thing) is PRECISELY why in OP's position I would be very aggressive about getting a second opinion and working with a doctor who can quarterback the therapies in light of the child's ambiguous diagnosis.

I am not the poster who said I would give my kid all therapies at all levels. I am the one who said look for areas of deficit and apply therapies there. Which is exactly what happened with my kid and solely because my kid was at high risk for delays due to being a premie. Which is the same as OP's situation.

If your kid is not a premie, but you notice a delay, gwt an evaluation, and if necessary.provide therapies. Be less concerned about diagnosis, which can change and apply APPROPRIATE therapies. If the therapy is not helping, stop it.

And yes, a good quarterback can certaintly help guide you.

Yeah, but how do you "look for deficits"? In great part, based on the results of diagnostics. If a child is diagnosed with ASD, by definition they have deficits in social skills. That's why you should always see a correct diagnosis; or if it's fuzzy or unstable, work with a professional who is willing to admit that.

There are milestones for social, behavioral, cognitive and physical development. If your child performs well below average for her developmental age, then an intervention may be warranted. There may or may not be a diagnosis associated with it. It may simply be a delay and the child can use some assistance to catch up. For a premie, subtract weeks early from actual age to get developmental age.

So you think people self-diagnose based on CDC milestone charts? That's not how it works.

No, based on personal experience, that's what an evaluator doing a NICU followup does when recommending therapy without giving a diagnosis.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

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.

OP said that the dev ped was inexperienced but since she was at a well regarded Children's hospital in her area, it is doubtful whoever administered the ADOS/ADI-R was also inexperienced. What say you, OP?

When we got ADOS done at Children's Center for Autism Spectrum Disorders here, ADOS/ADI-R was what these evaluators did every day and they were very experienced: ADOS is done in teams with a neuropsych and SLP who both get additional training for administering ADOS.

I don't think we need to grill OP for the details. Doctors misdiagnose things ALL THE TIME -- things that are much easier to diagnose than autism in a former preemie toddler with a speech delay. OP needs a full-on second autism evaluation/second opinion at another hospital, with a team that will take into account her observations and observe her child in multiple settings. OP maybe take a bunch of videos to show her development?

ADOS is ALWAYS done with ADI-R, which is where the parents' and teacher/caregiver observations are noted. When we did ADOS/ADI-R at Children's, we had many addition forms for the parents as well as teachers and it did look at the child in multiple settings: This is the standard for an evaluation with ADOS - it is NEVER given as a stand alone test.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

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.

OP said that the dev ped was inexperienced but since she was at a well regarded Children's hospital in her area, it is doubtful whoever administered the ADOS/ADI-R was also inexperienced. What say you, OP?

When we got ADOS done at Children's Center for Autism Spectrum Disorders here, ADOS/ADI-R was what these evaluators did every day and they were very experienced: ADOS is done in teams with a neuropsych and SLP who both get additional training for administering ADOS.

I don't think we need to grill OP for the details. Doctors misdiagnose things ALL THE TIME -- things that are much easier to diagnose than autism in a former preemie toddler with a speech delay. OP needs a full-on second autism evaluation/second opinion at another hospital, with a team that will take into account her observations and observe her child in multiple settings. OP maybe take a bunch of videos to show her development?

ADOS is ALWAYS done with ADI-R, which is where the parents' and teacher/caregiver observations are noted. When we did ADOS/ADI-R at Children's, we had many addition forms for the parents as well as teachers and it did look at the child in multiple settings: This is the standard for an evaluation with ADOS - it is NEVER given as a stand alone test.

Also, my DS made it on the spectrum by 1 point. The way they grade ADOS, the scores from the observation (ADOS) and ADI-R (Children's also used other forms like Vineland, etc.) all go into the final ADOS score. If it was only what they observed on the ADOS, my DS wouldn't be on the spectrum. He presents as NT to most people he meets in RL.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

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.

OP said that the dev ped was inexperienced but since she was at a well regarded Children's hospital in her area, it is doubtful whoever administered the ADOS/ADI-R was also inexperienced. What say you, OP?

When we got ADOS done at Children's Center for Autism Spectrum Disorders here, ADOS/ADI-R was what these evaluators did every day and they were very experienced: ADOS is done in teams with a neuropsych and SLP who both get additional training for administering ADOS.

OP made clear that she was not impressed by the testing and recommendations at the "Fancy World Renowned Hospital," as she called it. Testing was by a psychologist who graduated in 2017 not a developmental pediatrician. Also said the tester was not good with toddlers. So a mistake seems likely despite the hospital's reputation. Maybe they are having some quality control problems in the autism clinic?

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

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.

OP said that the dev ped was inexperienced but since she was at a well regarded Children's hospital in her area, it is doubtful whoever administered the ADOS/ADI-R was also inexperienced. What say you, OP?

When we got ADOS done at Children's Center for Autism Spectrum Disorders here, ADOS/ADI-R was what these evaluators did every day and they were very experienced: ADOS is done in teams with a neuropsych and SLP who both get additional training for administering ADOS.

OP made clear that she was not impressed by the testing and recommendations at the "Fancy World Renowned Hospital," as she called it. Testing was by a psychologist who graduated in 2017 not a developmental pediatrician. Also said the tester was not good with toddlers. So a mistake seems likely despite the hospital's reputation. Maybe they are having some quality control problems in the autism clinic?

Yes. And I'm not going to enter into the "autism is misdiagnosed" argument, but there are some clinics that basically diagnose 100% of the kids referred with autism. https://academiccommons.columbia.edu/doi/10.7916/D8M90GPG

[Anonymous]

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

[Anonymous]

Trying again:


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

[Anonymous]

Many of us have had OP experience. There was no team. Just one evaluator, an hour or two appointment and an ASD diagnosis.

[Anonymous]

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.

[Anonymous]

Anonymous wrote:Op again-- wow, this thread got out of control! A few things:

For people suggesting ADOS: yes, that's how she was diagnosed the first time. And if you think the ADOS is never wrong, I am not going to change your mind on an anonymous website. I may try to get an appointment with the Camaratas, as I think I have exhausted local options. Thanks for all suggestions.

She is as social as her twin sister, if not more so. When I pointed this out to the psychologist who diagnosed her, she said, "Well, your other twin might be autistic, too. You should have her tested also." I refused to have Other Twin tested, as no one from early intervention, the NICU follow-up clinic, speech therapy, daycare, etc., is raising any autism concerns about Other Twin. The NICU follow-up team actually told me, "You probably won't have any more problems with her." Literally the only people who think she needs autism testing are the people who make money from it.

Her improvement is NOT due to ABA. She did a center-based ABA program for a grand total of 7 days before we had to pull her out because the ABA people can't feed her. She has been in feeding therapy for a year, and her feeding issues are caused by a motor delay, NOT a behavioral problem (according to the OT and psychologist on the feeding team at Fancy World-Renowned Hospital). The ABA people insisted on treating her feeding issues as a behavior problem, and basically used ABA techniques to try to force-feed her (even though they had instructions from the feeding therapy team to NOT do this).

So now, I am calling other ABA providers to see if we can get in-home ABA started. My conversation with one of them today went like this:

BCBA: So, what behavior problems does your child have that require ABA?

Me: Well, she doesn't really have behavior problems. But she has a diagnosis of severe autism from the autism center at Fancy World-Renowned Hospital, and they say she needs 30 hours a week of ABA therapy, and early intervention is paying for it.

BCBA: So what behavior problems was the other ABA center treating her for?

Me: Well, they had goals like getting her to say "I want milk", instead of just "milk". But I'm not sure if that's really an autistic behavior problem, since my other twin just says "milk", and lots of 2-year-olds just say "milk".

BCBA: Anything else?

Me: She... doesn't have great eye contact with people she doesn't know? But it's fine with people she knows, like me, or her regular speech therapist.

BCBA: So, our ABA program generally treats kids who have severe behavior problems, like hitting and kicking people, or spitting at people, or throwing chairs.

Me: She doesn't do any of that. She's very sweet. She comforts her twin sister and says, "It's okay!" when her sister is upset.

BCBA: It doesn't sound like your child needs ABA, because she doesn't have behavior problems.

Me: But Fancy World-Renowned Hospital told me she needs 30 hours a week of ABA, or she's going to regress and become non-verbal and cognitively impaired.

BCBA: Well, I guess we can go ahead and schedule an evaluation.

OP, go to the Camarata's and they will guide you. Focus in the meanwhile on several day a week speech therapy. Its an easy fun trip to Nashville. Direct flight. Children's/science museum is really nice.

[Anonymous]

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.

That is your opinion. Also, aren't the Camaratas still in Nashville? That is where Vanderbilt is, so the trip is exactly the same. I can't speak to the cost and nor should anyone else. That is between OP and her insurance company.