ASD evaluation without selling a kidney

[Anonymous]

Anonymous wrote:

Anonymous wrote:Thank you for asking this question, and for all the responses. We paid thousands for a diagnosis from someone recommended by our private school this spring, and ended up asking for our money back (eval report was not timely delivered). I am now trying to find ways forward to see how to help our child without feeling like we are being scammed. In our case it seemed that all the person did was administer tests, and was not actually working as a counselor to help children, and it was clear our child has a high IQ and likely (?) dyslexia and possibly (?) borderline ADHD but maybe not (never got the report) and the sense we received from the tester was it was all geared towards getting our extra time and accommodations in school. This was the third person we’ve tried to seek help from, we tried recommended nutritionist and independently a psychiatrist before the school made a suggestion. So even assuming we can find affordable testing, what are good indicators that the results are trustworthy and the administrators are looking out primarily for the child’s welfare? Do you get second opinions? See,s hard to do when it is so expensive. But the responses here have been incredibly helpful and validating the feeling that this should not be so expensive and alternatives exist…even if we have to wait.

I’m so sorry PP. It’s not a good feeling. Against my better judgment I wasted $500 on a “2e consultation” this year and the lady only wanted to refer me to her buddy who does expense “executive function coaching.” Frankly the ONLY person we’ve gotten good advice from with respect to school and accommodations was a former special ed teacher. And they all seemed shocked when I indicated that no, double test time wasn’t actually what I was aiming for. Some of these practioners truly are diagnoses mills to get extended test time and ADHD meds.

In your shoes I’d wonder if the private school is the best place for him. A school that is a good fit for your kid should have ideas on how to accomodate him prior to a clear diagnosis. The challenges ought to be evident (behavioral? reading?) and so they ought to have strategies even without a diagnosis. Even when/if you get a clear dx they are still going to need to step up to support and they can do that before a diagnosis too. If they aren’t I’d worry they just want you to medicate the kid or are slowly counseling you out.

Anyway… one perspective I arrived at that I think has been helpful is to really focus primarily on the content of what the kid needs to learn in school. No matter what else happens, kid needs to learn to read and write. So in your shoes I think I’d focus on a laser beam on the reading/writing and possible dyslexia and go from there. I think if you take that route you’ll be able to access truly specialized experts who can help.

Also - if you never got the report, I hope you requested a refund or even did a charge back on your credit card. If that didn’t work, file a complaint to their licensing board.

[Anonymous]

Anonymous wrote:Thank you for asking this question, and for all the responses. We paid thousands for a diagnosis from someone recommended by our private school this spring, and ended up asking for our money back (eval report was not timely delivered). I am now trying to find ways forward to see how to help our child without feeling like we are being scammed. In our case it seemed that all the person did was administer tests, and was not actually working as a counselor to help children, and it was clear our child has a high IQ and likely (?) dyslexia and possibly (?) borderline ADHD but maybe not (never got the report) and the sense we received from the tester was it was all geared towards getting our extra time and accommodations in school. This was the third person we’ve tried to seek help from, we tried recommended nutritionist and independently a psychiatrist before the school made a suggestion. So even assuming we can find affordable testing, what are good indicators that the results are trustworthy and the administrators are looking out primarily for the child’s welfare? Do you get second opinions? See,s hard to do when it is so expensive. But the responses here have been incredibly helpful and validating the feeling that this should not be so expensive and alternatives exist…even if we have to wait.

I'm sorry you have had bad experiences. I think you might have misaligned expectations, though, as well. Generally the psychologists who administer tests only administer tests. That's their specialty and often their whole practice is administering tests and writing reports. Their reports give the test results and generally offer a list of accommodations (such as extra time) that seem appropriate based on the test results. The psychologist has always met with us after writing the report to discuss and go over the findings. They aren't also the people who will counsel your child.

After having this done, we have taken the report to our child's regular psychiatrist and therapist and school to implement steps from there and decide which accommodations and recommendations make sense. It is that team (and us of course) who are "looking out for the child's welfare."

A nutritionist wouldn't be the right person for this, and probably not a psychiatrist either. You want a psychologist who does testing (a "neuropsych').

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I knew DS had autism since he was little (no one believed me, initially). We paid a reasonable sum, in the hundreds, when he was diagnosed with ADHD by a developmental pediatrician at 6. His MCPS elementary school gave him an IEP due to extremely inattentive behaviors, inability to complete assignments on time, and write: he had group speech, a scribe/aide for writing, pull-outs to finish his work, preferential seating, repeated directions, etc. The works.

We paid Stixrud prices (thousands) for a full neuro when he was 10, because he needed updated data to qualify for MCPS' gifted and learning disabled program. ADHD was confirmed but we were told it would cost extra to explore autism. We chose not to, because he was getting everything he needed with the IEP, predicated on the ADHD. He got into the special program, which turned out great for him.

Only when he was 17 did we return to Stixrud to specifically ask for autism testing (and a reconfirmation of the ADHD), so we could request services and accommodations from colleges. His chosen college's Disability Office assigned him a single room with private bath on the strength of the autism diagnosis.

All this to say, OP, that:

A. You will need to budget money and time for repeated evaluations over the course of his childhood, because most institutions/programs require paperwork that is 4 years old or less. There are waitlists everywhere for testing and some of them can be very long. Make sure to schedule in advance.

B. You can be strategic in your diagnosis targeting, depending how you plan on using that label.

This is not necessary. You can schedule repeated testing at places like Children’s. I was encouraged to schedule serial testing years in advance. You don’t need to pay that much for it. Although I’m sure Stixrud loves your viewpoint!

PP you replied to. You're right, but we have ADHD ourselves and scheduling years in advance is not our strong suit Also, and this is important, not all neuropsych reports are created equal and we REALLY appreciated the doctor we worked with at Stixrud. The reports were extremely detailed, explained so much, and included a page in MCPS-speak of recommended accommodations that no elementary, middle or high school denied us. We had the same success for college accommodations, with the same doctor. It's not the label that opens doors; it's the way the doctor argues for accommodations that often clinches matters for institutions who need to be persuaded to provide those accommodations.

Of course I'm sure Children's and other hospital centers also have psychologists with good writing skills on staff, but they might be more pressed for time. We continued wth Stixrud because you don't change a winning team.

If you have $20k to waste or are set on justifying an accomodation to keep up with the Jonses (eg extended time on the SAT) ok fine. But for those of us who have limited budgets and have to invest in services that our kids need (OT, therapy, tutoring) then no, we cannot pay uneccesary money.

DP - what is the matter with you? Why do you think it's okay to speak to people like this?

what’s wrong with YOU? or better asked, what’s wrong with “providers” who charge SN families $5000 for an incomplete evaluation (like the PP whose kid didn’t even get autism included) or that they could get for an insurance copay elsewhere.

Are you trying to imply I'm a provider falsely representing myself as a parent? I'm not.

Please stop bashing other parents. You are literally achieving nothing.

Obviously not. I’m not bashing parents. I’m bashing the bad advice that you have to spend $1000ss on testing. And I am also bashing the numerous providers happy to take our money, yes.

LOL you implied parents are getting diagnoses to "keep up with the Jones". Stop being a toxic POS.

it happens. I literally just heard about a friend of a friend who was instructed by their kid’s private school to obtain a dx asap. it would be helpful for people advocating lining the pockets of Drs Stixrud and Black to give more information about their financial status, diagnosis, and why they did not rely on school testing, IEE, and/or insurance covered services.

All people on this board have SN kids. You need to do better to be kinder, this tone is out of line and unacceptable.

If you had a child with SN, you would know that 1) school testing cannot give medical diagnosis 2) w/o medical diagnosis a child with disability cannot get insurance coverage for any services 3) places that take insurance have 1-2 year waiting list for both ASD evaluations and full neuropsych. In fact, families that go via private pay route to private providers to get a faster diagnosis don't crowd further the KKI and Childrens waitlists. So it's a good thing.

Schools and Infants and Toddlers have much lower standard for identifying issues too - in speech, OT and physical development. Their evaluations are low quality and services are scarce and frankly also not great quality. People who can afford do private services.

And not that it's any of your business, but HHI is $280K, 5 yo ASD child diagnosed at 2.5 years in private practice.

I think this is wrong about needing a “medical diagnosis” for insurance coverage. We got OT covered without any diagnosis - the OT did their own testing to show the motor skills delays. Also got an amazing course of behavioral therapy covered with no diagnosis. Possibly ABA would require a “medical diagnosis” but I’m not sure that it does.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I knew DS had autism since he was little (no one believed me, initially). We paid a reasonable sum, in the hundreds, when he was diagnosed with ADHD by a developmental pediatrician at 6. His MCPS elementary school gave him an IEP due to extremely inattentive behaviors, inability to complete assignments on time, and write: he had group speech, a scribe/aide for writing, pull-outs to finish his work, preferential seating, repeated directions, etc. The works.

We paid Stixrud prices (thousands) for a full neuro when he was 10, because he needed updated data to qualify for MCPS' gifted and learning disabled program. ADHD was confirmed but we were told it would cost extra to explore autism. We chose not to, because he was getting everything he needed with the IEP, predicated on the ADHD. He got into the special program, which turned out great for him.

Only when he was 17 did we return to Stixrud to specifically ask for autism testing (and a reconfirmation of the ADHD), so we could request services and accommodations from colleges. His chosen college's Disability Office assigned him a single room with private bath on the strength of the autism diagnosis.

All this to say, OP, that:

A. You will need to budget money and time for repeated evaluations over the course of his childhood, because most institutions/programs require paperwork that is 4 years old or less. There are waitlists everywhere for testing and some of them can be very long. Make sure to schedule in advance.

B. You can be strategic in your diagnosis targeting, depending how you plan on using that label.

This is not necessary. You can schedule repeated testing at places like Children’s. I was encouraged to schedule serial testing years in advance. You don’t need to pay that much for it. Although I’m sure Stixrud loves your viewpoint!

PP you replied to. You're right, but we have ADHD ourselves and scheduling years in advance is not our strong suit Also, and this is important, not all neuropsych reports are created equal and we REALLY appreciated the doctor we worked with at Stixrud. The reports were extremely detailed, explained so much, and included a page in MCPS-speak of recommended accommodations that no elementary, middle or high school denied us. We had the same success for college accommodations, with the same doctor. It's not the label that opens doors; it's the way the doctor argues for accommodations that often clinches matters for institutions who need to be persuaded to provide those accommodations.

Of course I'm sure Children's and other hospital centers also have psychologists with good writing skills on staff, but they might be more pressed for time. We continued wth Stixrud because you don't change a winning team.

If you have $20k to waste or are set on justifying an accomodation to keep up with the Jonses (eg extended time on the SAT) ok fine. But for those of us who have limited budgets and have to invest in services that our kids need (OT, therapy, tutoring) then no, we cannot pay uneccesary money.

DP - what is the matter with you? Why do you think it's okay to speak to people like this?

what’s wrong with YOU? or better asked, what’s wrong with “providers” who charge SN families $5000 for an incomplete evaluation (like the PP whose kid didn’t even get autism included) or that they could get for an insurance copay elsewhere.

Are you trying to imply I'm a provider falsely representing myself as a parent? I'm not.

Please stop bashing other parents. You are literally achieving nothing.

Obviously not. I’m not bashing parents. I’m bashing the bad advice that you have to spend $1000ss on testing. And I am also bashing the numerous providers happy to take our money, yes.

LOL you implied parents are getting diagnoses to "keep up with the Jones". Stop being a toxic POS.

it happens. I literally just heard about a friend of a friend who was instructed by their kid’s private school to obtain a dx asap. it would be helpful for people advocating lining the pockets of Drs Stixrud and Black to give more information about their financial status, diagnosis, and why they did not rely on school testing, IEE, and/or insurance covered services.

All people on this board have SN kids. You need to do better to be kinder, this tone is out of line and unacceptable.

If you had a child with SN, you would know that 1) school testing cannot give medical diagnosis 2) w/o medical diagnosis a child with disability cannot get insurance coverage for any services 3) places that take insurance have 1-2 year waiting list for both ASD evaluations and full neuropsych. In fact, families that go via private pay route to private providers to get a faster diagnosis don't crowd further the KKI and Childrens waitlists. So it's a good thing.

Schools and Infants and Toddlers have much lower standard for identifying issues too - in speech, OT and physical development. Their evaluations are low quality and services are scarce and frankly also not great quality. People who can afford do private services.

And not that it's any of your business, but HHI is $280K, 5 yo ASD child diagnosed at 2.5 years in private practice.

I think this is wrong about needing a “medical diagnosis” for insurance coverage. We got OT covered without any diagnosis - the OT did their own testing to show the motor skills delays. Also got an amazing course of behavioral therapy covered with no diagnosis. Possibly ABA would require a “medical diagnosis” but I’m not sure that it does.

A more appropriate statement would be that your family specifically did not need a diagnosis for OT and you don't know if you would need it for ABA.

If we had a diagnosis we could possibly have gotten OT covered under our HMO plan. Since we didn't and they also wouldn't evaluate (thanks, Kaiser), we paid out of pocket until we could switch to a PPO plan. Thankfully we have access to a generous PPO plan that does not require any kind of referrals or pre-authorization (though they initially lied to us and said it did, thanks CareFirst). Therefore, they did cover OT without a diagnosis. In our case, the diagnosis did not help us get services covered but it did help us understand that DD will need these services long term, which is really important as we were thinking of stopping them since she had improved so much. I think our plan might require a diagnosis for ABA, I know other plans definitely do.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I knew DS had autism since he was little (no one believed me, initially). We paid a reasonable sum, in the hundreds, when he was diagnosed with ADHD by a developmental pediatrician at 6. His MCPS elementary school gave him an IEP due to extremely inattentive behaviors, inability to complete assignments on time, and write: he had group speech, a scribe/aide for writing, pull-outs to finish his work, preferential seating, repeated directions, etc. The works.

We paid Stixrud prices (thousands) for a full neuro when he was 10, because he needed updated data to qualify for MCPS' gifted and learning disabled program. ADHD was confirmed but we were told it would cost extra to explore autism. We chose not to, because he was getting everything he needed with the IEP, predicated on the ADHD. He got into the special program, which turned out great for him.

Only when he was 17 did we return to Stixrud to specifically ask for autism testing (and a reconfirmation of the ADHD), so we could request services and accommodations from colleges. His chosen college's Disability Office assigned him a single room with private bath on the strength of the autism diagnosis.

All this to say, OP, that:

A. You will need to budget money and time for repeated evaluations over the course of his childhood, because most institutions/programs require paperwork that is 4 years old or less. There are waitlists everywhere for testing and some of them can be very long. Make sure to schedule in advance.

B. You can be strategic in your diagnosis targeting, depending how you plan on using that label.

This is not necessary. You can schedule repeated testing at places like Children’s. I was encouraged to schedule serial testing years in advance. You don’t need to pay that much for it. Although I’m sure Stixrud loves your viewpoint!

PP you replied to. You're right, but we have ADHD ourselves and scheduling years in advance is not our strong suit Also, and this is important, not all neuropsych reports are created equal and we REALLY appreciated the doctor we worked with at Stixrud. The reports were extremely detailed, explained so much, and included a page in MCPS-speak of recommended accommodations that no elementary, middle or high school denied us. We had the same success for college accommodations, with the same doctor. It's not the label that opens doors; it's the way the doctor argues for accommodations that often clinches matters for institutions who need to be persuaded to provide those accommodations.

Of course I'm sure Children's and other hospital centers also have psychologists with good writing skills on staff, but they might be more pressed for time. We continued wth Stixrud because you don't change a winning team.

If you have $20k to waste or are set on justifying an accomodation to keep up with the Jonses (eg extended time on the SAT) ok fine. But for those of us who have limited budgets and have to invest in services that our kids need (OT, therapy, tutoring) then no, we cannot pay uneccesary money.

DP - what is the matter with you? Why do you think it's okay to speak to people like this?

what’s wrong with YOU? or better asked, what’s wrong with “providers” who charge SN families $5000 for an incomplete evaluation (like the PP whose kid didn’t even get autism included) or that they could get for an insurance copay elsewhere.

Are you trying to imply I'm a provider falsely representing myself as a parent? I'm not.

Please stop bashing other parents. You are literally achieving nothing.

Obviously not. I’m not bashing parents. I’m bashing the bad advice that you have to spend $1000ss on testing. And I am also bashing the numerous providers happy to take our money, yes.

LOL you implied parents are getting diagnoses to "keep up with the Jones". Stop being a toxic POS.

it happens. I literally just heard about a friend of a friend who was instructed by their kid’s private school to obtain a dx asap. it would be helpful for people advocating lining the pockets of Drs Stixrud and Black to give more information about their financial status, diagnosis, and why they did not rely on school testing, IEE, and/or insurance covered services.

All people on this board have SN kids. You need to do better to be kinder, this tone is out of line and unacceptable.

If you had a child with SN, you would know that 1) school testing cannot give medical diagnosis 2) w/o medical diagnosis a child with disability cannot get insurance coverage for any services 3) places that take insurance have 1-2 year waiting list for both ASD evaluations and full neuropsych. In fact, families that go via private pay route to private providers to get a faster diagnosis don't crowd further the KKI and Childrens waitlists. So it's a good thing.

Schools and Infants and Toddlers have much lower standard for identifying issues too - in speech, OT and physical development. Their evaluations are low quality and services are scarce and frankly also not great quality. People who can afford do private services.

And not that it's any of your business, but HHI is $280K, 5 yo ASD child diagnosed at 2.5 years in private practice.

I think this is wrong about needing a “medical diagnosis” for insurance coverage. We got OT covered without any diagnosis - the OT did their own testing to show the motor skills delays. Also got an amazing course of behavioral therapy covered with no diagnosis. Possibly ABA would require a “medical diagnosis” but I’m not sure that it does.

NP - almost all private payors require a diagnosis for covered services. That can be done in different ways, and a therapist doesn't necessarily need to render a formal diagnosis of ASD or anxiety or whatever, but the vast majority of insurance companies are going to require that.

PP is right that school testing can't render a diagnosis that can be used for healthcare insurance reimbursement. My DS was "diagnosed" with specific learning disability/dyslexia through school testing, but no insurance company is going to pay for the private dyslexia remediation services we're getting for him.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I knew DS had autism since he was little (no one believed me, initially). We paid a reasonable sum, in the hundreds, when he was diagnosed with ADHD by a developmental pediatrician at 6. His MCPS elementary school gave him an IEP due to extremely inattentive behaviors, inability to complete assignments on time, and write: he had group speech, a scribe/aide for writing, pull-outs to finish his work, preferential seating, repeated directions, etc. The works.

We paid Stixrud prices (thousands) for a full neuro when he was 10, because he needed updated data to qualify for MCPS' gifted and learning disabled program. ADHD was confirmed but we were told it would cost extra to explore autism. We chose not to, because he was getting everything he needed with the IEP, predicated on the ADHD. He got into the special program, which turned out great for him.

Only when he was 17 did we return to Stixrud to specifically ask for autism testing (and a reconfirmation of the ADHD), so we could request services and accommodations from colleges. His chosen college's Disability Office assigned him a single room with private bath on the strength of the autism diagnosis.

All this to say, OP, that:

A. You will need to budget money and time for repeated evaluations over the course of his childhood, because most institutions/programs require paperwork that is 4 years old or less. There are waitlists everywhere for testing and some of them can be very long. Make sure to schedule in advance.

B. You can be strategic in your diagnosis targeting, depending how you plan on using that label.

This is not necessary. You can schedule repeated testing at places like Children’s. I was encouraged to schedule serial testing years in advance. You don’t need to pay that much for it. Although I’m sure Stixrud loves your viewpoint!

PP you replied to. You're right, but we have ADHD ourselves and scheduling years in advance is not our strong suit Also, and this is important, not all neuropsych reports are created equal and we REALLY appreciated the doctor we worked with at Stixrud. The reports were extremely detailed, explained so much, and included a page in MCPS-speak of recommended accommodations that no elementary, middle or high school denied us. We had the same success for college accommodations, with the same doctor. It's not the label that opens doors; it's the way the doctor argues for accommodations that often clinches matters for institutions who need to be persuaded to provide those accommodations.

Of course I'm sure Children's and other hospital centers also have psychologists with good writing skills on staff, but they might be more pressed for time. We continued wth Stixrud because you don't change a winning team.

If you have $20k to waste or are set on justifying an accomodation to keep up with the Jonses (eg extended time on the SAT) ok fine. But for those of us who have limited budgets and have to invest in services that our kids need (OT, therapy, tutoring) then no, we cannot pay uneccesary money.

DP - what is the matter with you? Why do you think it's okay to speak to people like this?

what’s wrong with YOU? or better asked, what’s wrong with “providers” who charge SN families $5000 for an incomplete evaluation (like the PP whose kid didn’t even get autism included) or that they could get for an insurance copay elsewhere.

Are you trying to imply I'm a provider falsely representing myself as a parent? I'm not.

Please stop bashing other parents. You are literally achieving nothing.

Obviously not. I’m not bashing parents. I’m bashing the bad advice that you have to spend $1000ss on testing. And I am also bashing the numerous providers happy to take our money, yes.

LOL you implied parents are getting diagnoses to "keep up with the Jones". Stop being a toxic POS.

it happens. I literally just heard about a friend of a friend who was instructed by their kid’s private school to obtain a dx asap. it would be helpful for people advocating lining the pockets of Drs Stixrud and Black to give more information about their financial status, diagnosis, and why they did not rely on school testing, IEE, and/or insurance covered services.

All people on this board have SN kids. You need to do better to be kinder, this tone is out of line and unacceptable.

If you had a child with SN, you would know that 1) school testing cannot give medical diagnosis 2) w/o medical diagnosis a child with disability cannot get insurance coverage for any services 3) places that take insurance have 1-2 year waiting list for both ASD evaluations and full neuropsych. In fact, families that go via private pay route to private providers to get a faster diagnosis don't crowd further the KKI and Childrens waitlists. So it's a good thing.

Schools and Infants and Toddlers have much lower standard for identifying issues too - in speech, OT and physical development. Their evaluations are low quality and services are scarce and frankly also not great quality. People who can afford do private services.

And not that it's any of your business, but HHI is $280K, 5 yo ASD child diagnosed at 2.5 years in private practice.

I think this is wrong about needing a “medical diagnosis” for insurance coverage. We got OT covered without any diagnosis - the OT did their own testing to show the motor skills delays. Also got an amazing course of behavioral therapy covered with no diagnosis. Possibly ABA would require a “medical diagnosis” but I’m not sure that it does.

Fair enough - it doesn't have to be an MD, it can be an OT or SLP for respective areas. HOWEVER, my point still stands. It cannot be a school district employed OT. You need a private provider to evaluate and those who take insurance have super long wait lists. And, OT cannot evaluate ASD/ADHD/anxiety types of conditions, so if that's present, simply going to OT doesn't do anything.

[Anonymous]

The questions are:
- Do you need a full evaluation (neuropsych) by a psychologist to get an ASD or ADHD diagnosis?
Answer: not necessarily, psychiatrists and developmental pediatricians can also diagnose, but these are not cheap or easy to access either. Pediatricians can also diagnose ADHD but pediatricians are generally not great with developmental issues.

AND
- Do you need an ASD or ADHD diagnosis to get insurance to cover necessary services?
Answer: Sometimes, depending on your specific plan and the services you need.

AND
- Is a medical diagnosis the same thing as an educational diagnosis?
Answer: No, you can have a medical diagnosis and not qualify for an educational diagnosis, and still get services through your insurance even if the schools don't provide services. And an educational diagnosis won't help if the insurance requires a medical diagnosis to cover services.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Thank you for asking this question, and for all the responses. We paid thousands for a diagnosis from someone recommended by our private school this spring, and ended up asking for our money back (eval report was not timely delivered). I am now trying to find ways forward to see how to help our child without feeling like we are being scammed. In our case it seemed that all the person did was administer tests, and was not actually working as a counselor to help children, and it was clear our child has a high IQ and likely (?) dyslexia and possibly (?) borderline ADHD but maybe not (never got the report) and the sense we received from the tester was it was all geared towards getting our extra time and accommodations in school. This was the third person we’ve tried to seek help from, we tried recommended nutritionist and independently a psychiatrist before the school made a suggestion. So even assuming we can find affordable testing, what are good indicators that the results are trustworthy and the administrators are looking out primarily for the child’s welfare? Do you get second opinions? See,s hard to do when it is so expensive. But the responses here have been incredibly helpful and validating the feeling that this should not be so expensive and alternatives exist…even if we have to wait.

I'm sorry you have had bad experiences. I think you might have misaligned expectations, though, as well. Generally the psychologists who administer tests only administer tests. That's their specialty and often their whole practice is administering tests and writing reports. Their reports give the test results and generally offer a list of accommodations (such as extra time) that seem appropriate based on the test results. The psychologist has always met with us after writing the report to discuss and go over the findings. They aren't also the people who will counsel your child.

After having this done, we have taken the report to our child's regular psychiatrist and therapist and school to implement steps from there and decide which accommodations and recommendations make sense. It is that team (and us of course) who are "looking out for the child's welfare."

A nutritionist wouldn't be the right person for this, and probably not a psychiatrist either. You want a psychologist who does testing (a "neuropsych').

Except this provider didn’t actually complete a report. But yes, I do think it’s important for parents to understand that the “neuropsych” is done one a one-off basis by a practitioner with no relationship with your child and who will not generally provide ongoing therapy. As well, many of their recommendations for therapy will be impossible to access, nonexistant, or impossible for the school to implement. It’s a LOT of money to pay just on the faith that recommendations made by someone who doesn’t actually know your kid will be executable. But if all you’re looking for is a piece of paper to get extended time on the SATs, that is likely doable.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I knew DS had autism since he was little (no one believed me, initially). We paid a reasonable sum, in the hundreds, when he was diagnosed with ADHD by a developmental pediatrician at 6. His MCPS elementary school gave him an IEP due to extremely inattentive behaviors, inability to complete assignments on time, and write: he had group speech, a scribe/aide for writing, pull-outs to finish his work, preferential seating, repeated directions, etc. The works.

We paid Stixrud prices (thousands) for a full neuro when he was 10, because he needed updated data to qualify for MCPS' gifted and learning disabled program. ADHD was confirmed but we were told it would cost extra to explore autism. We chose not to, because he was getting everything he needed with the IEP, predicated on the ADHD. He got into the special program, which turned out great for him.

Only when he was 17 did we return to Stixrud to specifically ask for autism testing (and a reconfirmation of the ADHD), so we could request services and accommodations from colleges. His chosen college's Disability Office assigned him a single room with private bath on the strength of the autism diagnosis.

All this to say, OP, that:

A. You will need to budget money and time for repeated evaluations over the course of his childhood, because most institutions/programs require paperwork that is 4 years old or less. There are waitlists everywhere for testing and some of them can be very long. Make sure to schedule in advance.

B. You can be strategic in your diagnosis targeting, depending how you plan on using that label.

This is not necessary. You can schedule repeated testing at places like Children’s. I was encouraged to schedule serial testing years in advance. You don’t need to pay that much for it. Although I’m sure Stixrud loves your viewpoint!

PP you replied to. You're right, but we have ADHD ourselves and scheduling years in advance is not our strong suit Also, and this is important, not all neuropsych reports are created equal and we REALLY appreciated the doctor we worked with at Stixrud. The reports were extremely detailed, explained so much, and included a page in MCPS-speak of recommended accommodations that no elementary, middle or high school denied us. We had the same success for college accommodations, with the same doctor. It's not the label that opens doors; it's the way the doctor argues for accommodations that often clinches matters for institutions who need to be persuaded to provide those accommodations.

Of course I'm sure Children's and other hospital centers also have psychologists with good writing skills on staff, but they might be more pressed for time. We continued wth Stixrud because you don't change a winning team.

If you have $20k to waste or are set on justifying an accomodation to keep up with the Jonses (eg extended time on the SAT) ok fine. But for those of us who have limited budgets and have to invest in services that our kids need (OT, therapy, tutoring) then no, we cannot pay uneccesary money.

DP - what is the matter with you? Why do you think it's okay to speak to people like this?

what’s wrong with YOU? or better asked, what’s wrong with “providers” who charge SN families $5000 for an incomplete evaluation (like the PP whose kid didn’t even get autism included) or that they could get for an insurance copay elsewhere.

Are you trying to imply I'm a provider falsely representing myself as a parent? I'm not.

Please stop bashing other parents. You are literally achieving nothing.

Obviously not. I’m not bashing parents. I’m bashing the bad advice that you have to spend $1000ss on testing. And I am also bashing the numerous providers happy to take our money, yes.

LOL you implied parents are getting diagnoses to "keep up with the Jones". Stop being a toxic POS.

it happens. I literally just heard about a friend of a friend who was instructed by their kid’s private school to obtain a dx asap. it would be helpful for people advocating lining the pockets of Drs Stixrud and Black to give more information about their financial status, diagnosis, and why they did not rely on school testing, IEE, and/or insurance covered services.

All people on this board have SN kids. You need to do better to be kinder, this tone is out of line and unacceptable.

If you had a child with SN, you would know that 1) school testing cannot give medical diagnosis 2) w/o medical diagnosis a child with disability cannot get insurance coverage for any services 3) places that take insurance have 1-2 year waiting list for both ASD evaluations and full neuropsych. In fact, families that go via private pay route to private providers to get a faster diagnosis don't crowd further the KKI and Childrens waitlists. So it's a good thing.

Schools and Infants and Toddlers have much lower standard for identifying issues too - in speech, OT and physical development. Their evaluations are low quality and services are scarce and frankly also not great quality. People who can afford do private services.

And not that it's any of your business, but HHI is $280K, 5 yo ASD child diagnosed at 2.5 years in private practice.

I think this is wrong about needing a “medical diagnosis” for insurance coverage. We got OT covered without any diagnosis - the OT did their own testing to show the motor skills delays. Also got an amazing course of behavioral therapy covered with no diagnosis. Possibly ABA would require a “medical diagnosis” but I’m not sure that it does.

A more appropriate statement would be that your family specifically did not need a diagnosis for OT and you don't know if you would need it for ABA.

If we had a diagnosis we could possibly have gotten OT covered under our HMO plan. Since we didn't and they also wouldn't evaluate (thanks, Kaiser), we paid out of pocket until we could switch to a PPO plan. Thankfully we have access to a generous PPO plan that does not require any kind of referrals or pre-authorization (though they initially lied to us and said it did, thanks CareFirst). Therefore, they did cover OT without a diagnosis. In our case, the diagnosis did not help us get services covered but it did help us understand that DD will need these services long term, which is really important as we were thinking of stopping them since she had improved so much. I think our plan might require a diagnosis for ABA, I know other plans definitely do.

Yes, since ABA services can be so intensive and expensive it makes sense that most insurance companies would require more extensive pre-authorization. But I’m pretty sure most ABA companies will fine a way to do the ADOS quickly for a dx. I’d still counsel any parent with a small kid w suspected autism to go first through the school district because that way you can access the free early intervention services and any available school programs. No medical dx needed.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I knew DS had autism since he was little (no one believed me, initially). We paid a reasonable sum, in the hundreds, when he was diagnosed with ADHD by a developmental pediatrician at 6. His MCPS elementary school gave him an IEP due to extremely inattentive behaviors, inability to complete assignments on time, and write: he had group speech, a scribe/aide for writing, pull-outs to finish his work, preferential seating, repeated directions, etc. The works.

We paid Stixrud prices (thousands) for a full neuro when he was 10, because he needed updated data to qualify for MCPS' gifted and learning disabled program. ADHD was confirmed but we were told it would cost extra to explore autism. We chose not to, because he was getting everything he needed with the IEP, predicated on the ADHD. He got into the special program, which turned out great for him.

Only when he was 17 did we return to Stixrud to specifically ask for autism testing (and a reconfirmation of the ADHD), so we could request services and accommodations from colleges. His chosen college's Disability Office assigned him a single room with private bath on the strength of the autism diagnosis.

All this to say, OP, that:

A. You will need to budget money and time for repeated evaluations over the course of his childhood, because most institutions/programs require paperwork that is 4 years old or less. There are waitlists everywhere for testing and some of them can be very long. Make sure to schedule in advance.

B. You can be strategic in your diagnosis targeting, depending how you plan on using that label.

This is not necessary. You can schedule repeated testing at places like Children’s. I was encouraged to schedule serial testing years in advance. You don’t need to pay that much for it. Although I’m sure Stixrud loves your viewpoint!

PP you replied to. You're right, but we have ADHD ourselves and scheduling years in advance is not our strong suit Also, and this is important, not all neuropsych reports are created equal and we REALLY appreciated the doctor we worked with at Stixrud. The reports were extremely detailed, explained so much, and included a page in MCPS-speak of recommended accommodations that no elementary, middle or high school denied us. We had the same success for college accommodations, with the same doctor. It's not the label that opens doors; it's the way the doctor argues for accommodations that often clinches matters for institutions who need to be persuaded to provide those accommodations.

Of course I'm sure Children's and other hospital centers also have psychologists with good writing skills on staff, but they might be more pressed for time. We continued wth Stixrud because you don't change a winning team.

If you have $20k to waste or are set on justifying an accomodation to keep up with the Jonses (eg extended time on the SAT) ok fine. But for those of us who have limited budgets and have to invest in services that our kids need (OT, therapy, tutoring) then no, we cannot pay uneccesary money.

DP - what is the matter with you? Why do you think it's okay to speak to people like this?

what’s wrong with YOU? or better asked, what’s wrong with “providers” who charge SN families $5000 for an incomplete evaluation (like the PP whose kid didn’t even get autism included) or that they could get for an insurance copay elsewhere.

Are you trying to imply I'm a provider falsely representing myself as a parent? I'm not.

Please stop bashing other parents. You are literally achieving nothing.

Obviously not. I’m not bashing parents. I’m bashing the bad advice that you have to spend $1000ss on testing. And I am also bashing the numerous providers happy to take our money, yes.

LOL you implied parents are getting diagnoses to "keep up with the Jones". Stop being a toxic POS.

it happens. I literally just heard about a friend of a friend who was instructed by their kid’s private school to obtain a dx asap. it would be helpful for people advocating lining the pockets of Drs Stixrud and Black to give more information about their financial status, diagnosis, and why they did not rely on school testing, IEE, and/or insurance covered services.

All people on this board have SN kids. You need to do better to be kinder, this tone is out of line and unacceptable.

If you had a child with SN, you would know that 1) school testing cannot give medical diagnosis 2) w/o medical diagnosis a child with disability cannot get insurance coverage for any services 3) places that take insurance have 1-2 year waiting list for both ASD evaluations and full neuropsych. In fact, families that go via private pay route to private providers to get a faster diagnosis don't crowd further the KKI and Childrens waitlists. So it's a good thing.

Schools and Infants and Toddlers have much lower standard for identifying issues too - in speech, OT and physical development. Their evaluations are low quality and services are scarce and frankly also not great quality. People who can afford do private services.

And not that it's any of your business, but HHI is $280K, 5 yo ASD child diagnosed at 2.5 years in private practice.

I think this is wrong about needing a “medical diagnosis” for insurance coverage. We got OT covered without any diagnosis - the OT did their own testing to show the motor skills delays. Also got an amazing course of behavioral therapy covered with no diagnosis. Possibly ABA would require a “medical diagnosis” but I’m not sure that it does.

NP - almost all private payors require a diagnosis for covered services. That can be done in different ways, and a therapist doesn't necessarily need to render a formal diagnosis of ASD or anxiety or whatever, but the vast majority of insurance companies are going to require that.

PP is right that school testing can't render a diagnosis that can be used for healthcare insurance reimbursement. My DS was "diagnosed" with specific learning disability/dyslexia through school testing, but no insurance company is going to pay for the private dyslexia remediation services we're getting for him.

No that’s just not true that you have to do a pricey private diagnostic evaluation to get any insurance covered services. For most services the provider enters a diagnostic code. I’ve gotten a ton of covered services for my kid prior to the DSM dx. For some services (such as ABA) more would be required. And obviously insurance companies vary.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I knew DS had autism since he was little (no one believed me, initially). We paid a reasonable sum, in the hundreds, when he was diagnosed with ADHD by a developmental pediatrician at 6. His MCPS elementary school gave him an IEP due to extremely inattentive behaviors, inability to complete assignments on time, and write: he had group speech, a scribe/aide for writing, pull-outs to finish his work, preferential seating, repeated directions, etc. The works.

We paid Stixrud prices (thousands) for a full neuro when he was 10, because he needed updated data to qualify for MCPS' gifted and learning disabled program. ADHD was confirmed but we were told it would cost extra to explore autism. We chose not to, because he was getting everything he needed with the IEP, predicated on the ADHD. He got into the special program, which turned out great for him.

Only when he was 17 did we return to Stixrud to specifically ask for autism testing (and a reconfirmation of the ADHD), so we could request services and accommodations from colleges. His chosen college's Disability Office assigned him a single room with private bath on the strength of the autism diagnosis.

All this to say, OP, that:

A. You will need to budget money and time for repeated evaluations over the course of his childhood, because most institutions/programs require paperwork that is 4 years old or less. There are waitlists everywhere for testing and some of them can be very long. Make sure to schedule in advance.

B. You can be strategic in your diagnosis targeting, depending how you plan on using that label.

This is not necessary. You can schedule repeated testing at places like Children’s. I was encouraged to schedule serial testing years in advance. You don’t need to pay that much for it. Although I’m sure Stixrud loves your viewpoint!

PP you replied to. You're right, but we have ADHD ourselves and scheduling years in advance is not our strong suit Also, and this is important, not all neuropsych reports are created equal and we REALLY appreciated the doctor we worked with at Stixrud. The reports were extremely detailed, explained so much, and included a page in MCPS-speak of recommended accommodations that no elementary, middle or high school denied us. We had the same success for college accommodations, with the same doctor. It's not the label that opens doors; it's the way the doctor argues for accommodations that often clinches matters for institutions who need to be persuaded to provide those accommodations.

Of course I'm sure Children's and other hospital centers also have psychologists with good writing skills on staff, but they might be more pressed for time. We continued wth Stixrud because you don't change a winning team.

If you have $20k to waste or are set on justifying an accomodation to keep up with the Jonses (eg extended time on the SAT) ok fine. But for those of us who have limited budgets and have to invest in services that our kids need (OT, therapy, tutoring) then no, we cannot pay uneccesary money.

DP - what is the matter with you? Why do you think it's okay to speak to people like this?

what’s wrong with YOU? or better asked, what’s wrong with “providers” who charge SN families $5000 for an incomplete evaluation (like the PP whose kid didn’t even get autism included) or that they could get for an insurance copay elsewhere.

Are you trying to imply I'm a provider falsely representing myself as a parent? I'm not.

Please stop bashing other parents. You are literally achieving nothing.

Obviously not. I’m not bashing parents. I’m bashing the bad advice that you have to spend $1000ss on testing. And I am also bashing the numerous providers happy to take our money, yes.

LOL you implied parents are getting diagnoses to "keep up with the Jones". Stop being a toxic POS.

it happens. I literally just heard about a friend of a friend who was instructed by their kid’s private school to obtain a dx asap. it would be helpful for people advocating lining the pockets of Drs Stixrud and Black to give more information about their financial status, diagnosis, and why they did not rely on school testing, IEE, and/or insurance covered services.

All people on this board have SN kids. You need to do better to be kinder, this tone is out of line and unacceptable.

If you had a child with SN, you would know that 1) school testing cannot give medical diagnosis 2) w/o medical diagnosis a child with disability cannot get insurance coverage for any services 3) places that take insurance have 1-2 year waiting list for both ASD evaluations and full neuropsych. In fact, families that go via private pay route to private providers to get a faster diagnosis don't crowd further the KKI and Childrens waitlists. So it's a good thing.

Schools and Infants and Toddlers have much lower standard for identifying issues too - in speech, OT and physical development. Their evaluations are low quality and services are scarce and frankly also not great quality. People who can afford do private services.

And not that it's any of your business, but HHI is $280K, 5 yo ASD child diagnosed at 2.5 years in private practice.

I think this is wrong about needing a “medical diagnosis” for insurance coverage. We got OT covered without any diagnosis - the OT did their own testing to show the motor skills delays. Also got an amazing course of behavioral therapy covered with no diagnosis. Possibly ABA would require a “medical diagnosis” but I’m not sure that it does.

Fair enough - it doesn't have to be an MD, it can be an OT or SLP for respective areas. HOWEVER, my point still stands. It cannot be a school district employed OT. You need a private provider to evaluate and those who take insurance have super long wait lists. And, OT cannot evaluate ASD/ADHD/anxiety types of conditions, so if that's present, simply going to OT doesn't do anything.

This is just not true in my experience. We have been able to access OT and behavioral therapy relatively easily, and the practioners were quite able to figure out how to bill insurance. Yes there was some waiting but certainly, delaying the necessary therapies until we got the “neuropsych” would not have helped anything. We did eventually get a dx (from KKI) but the OT and behavioral therapy (and IEP under the developmental delay category) we got with no dx were probably among the most useful therapies we have done over the long haul.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Thank you for asking this question, and for all the responses. We paid thousands for a diagnosis from someone recommended by our private school this spring, and ended up asking for our money back (eval report was not timely delivered). I am now trying to find ways forward to see how to help our child without feeling like we are being scammed. In our case it seemed that all the person did was administer tests, and was not actually working as a counselor to help children, and it was clear our child has a high IQ and likely (?) dyslexia and possibly (?) borderline ADHD but maybe not (never got the report) and the sense we received from the tester was it was all geared towards getting our extra time and accommodations in school. This was the third person we’ve tried to seek help from, we tried recommended nutritionist and independently a psychiatrist before the school made a suggestion. So even assuming we can find affordable testing, what are good indicators that the results are trustworthy and the administrators are looking out primarily for the child’s welfare? Do you get second opinions? See,s hard to do when it is so expensive. But the responses here have been incredibly helpful and validating the feeling that this should not be so expensive and alternatives exist…even if we have to wait.

I'm sorry you have had bad experiences. I think you might have misaligned expectations, though, as well. Generally the psychologists who administer tests only administer tests. That's their specialty and often their whole practice is administering tests and writing reports. Their reports give the test results and generally offer a list of accommodations (such as extra time) that seem appropriate based on the test results. The psychologist has always met with us after writing the report to discuss and go over the findings. They aren't also the people who will counsel your child.

After having this done, we have taken the report to our child's regular psychiatrist and therapist and school to implement steps from there and decide which accommodations and recommendations make sense. It is that team (and us of course) who are "looking out for the child's welfare."

A nutritionist wouldn't be the right person for this, and probably not a psychiatrist either. You want a psychologist who does testing (a "neuropsych').

Except this provider didn’t actually complete a report. But yes, I do think it’s important for parents to understand that the “neuropsych” is done one a one-off basis by a practitioner with no relationship with your child and who will not generally provide ongoing therapy. As well, many of their recommendations for therapy will be impossible to access, nonexistant, or impossible for the school to implement. It’s a LOT of money to pay just on the faith that recommendations made by someone who doesn’t actually know your kid will be executable. But if all you’re looking for is a piece of paper to get extended time on the SATs, that is likely doable.

This wasn't our experience at all. Recommendations were definitely actionable and very helpful (extra time is not one of the recommendations). And the evaluator did a school observation, had teachers fill out rating scales, spoke extensively with us and her OT, and reviewed documents in addition to the testing so she wasn't just relying on the testing. If anything your comment highlights the importance of working with someone who will do a thorough evaluation, which takes time, and unfortunately working with insurance limits the time they can spend with your child.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I knew DS had autism since he was little (no one believed me, initially). We paid a reasonable sum, in the hundreds, when he was diagnosed with ADHD by a developmental pediatrician at 6. His MCPS elementary school gave him an IEP due to extremely inattentive behaviors, inability to complete assignments on time, and write: he had group speech, a scribe/aide for writing, pull-outs to finish his work, preferential seating, repeated directions, etc. The works.

We paid Stixrud prices (thousands) for a full neuro when he was 10, because he needed updated data to qualify for MCPS' gifted and learning disabled program. ADHD was confirmed but we were told it would cost extra to explore autism. We chose not to, because he was getting everything he needed with the IEP, predicated on the ADHD. He got into the special program, which turned out great for him.

Only when he was 17 did we return to Stixrud to specifically ask for autism testing (and a reconfirmation of the ADHD), so we could request services and accommodations from colleges. His chosen college's Disability Office assigned him a single room with private bath on the strength of the autism diagnosis.

All this to say, OP, that:

A. You will need to budget money and time for repeated evaluations over the course of his childhood, because most institutions/programs require paperwork that is 4 years old or less. There are waitlists everywhere for testing and some of them can be very long. Make sure to schedule in advance.

B. You can be strategic in your diagnosis targeting, depending how you plan on using that label.

This is not necessary. You can schedule repeated testing at places like Children’s. I was encouraged to schedule serial testing years in advance. You don’t need to pay that much for it. Although I’m sure Stixrud loves your viewpoint!

PP you replied to. You're right, but we have ADHD ourselves and scheduling years in advance is not our strong suit Also, and this is important, not all neuropsych reports are created equal and we REALLY appreciated the doctor we worked with at Stixrud. The reports were extremely detailed, explained so much, and included a page in MCPS-speak of recommended accommodations that no elementary, middle or high school denied us. We had the same success for college accommodations, with the same doctor. It's not the label that opens doors; it's the way the doctor argues for accommodations that often clinches matters for institutions who need to be persuaded to provide those accommodations.

Of course I'm sure Children's and other hospital centers also have psychologists with good writing skills on staff, but they might be more pressed for time. We continued wth Stixrud because you don't change a winning team.

If you have $20k to waste or are set on justifying an accomodation to keep up with the Jonses (eg extended time on the SAT) ok fine. But for those of us who have limited budgets and have to invest in services that our kids need (OT, therapy, tutoring) then no, we cannot pay uneccesary money.

DP - what is the matter with you? Why do you think it's okay to speak to people like this?

what’s wrong with YOU? or better asked, what’s wrong with “providers” who charge SN families $5000 for an incomplete evaluation (like the PP whose kid didn’t even get autism included) or that they could get for an insurance copay elsewhere.

Are you trying to imply I'm a provider falsely representing myself as a parent? I'm not.

Please stop bashing other parents. You are literally achieving nothing.

Obviously not. I’m not bashing parents. I’m bashing the bad advice that you have to spend $1000ss on testing. And I am also bashing the numerous providers happy to take our money, yes.

LOL you implied parents are getting diagnoses to "keep up with the Jones". Stop being a toxic POS.

it happens. I literally just heard about a friend of a friend who was instructed by their kid’s private school to obtain a dx asap. it would be helpful for people advocating lining the pockets of Drs Stixrud and Black to give more information about their financial status, diagnosis, and why they did not rely on school testing, IEE, and/or insurance covered services.

All people on this board have SN kids. You need to do better to be kinder, this tone is out of line and unacceptable.

If you had a child with SN, you would know that 1) school testing cannot give medical diagnosis 2) w/o medical diagnosis a child with disability cannot get insurance coverage for any services 3) places that take insurance have 1-2 year waiting list for both ASD evaluations and full neuropsych. In fact, families that go via private pay route to private providers to get a faster diagnosis don't crowd further the KKI and Childrens waitlists. So it's a good thing.

Schools and Infants and Toddlers have much lower standard for identifying issues too - in speech, OT and physical development. Their evaluations are low quality and services are scarce and frankly also not great quality. People who can afford do private services.

And not that it's any of your business, but HHI is $280K, 5 yo ASD child diagnosed at 2.5 years in private practice.

I think this is wrong about needing a “medical diagnosis” for insurance coverage. We got OT covered without any diagnosis - the OT did their own testing to show the motor skills delays. Also got an amazing course of behavioral therapy covered with no diagnosis. Possibly ABA would require a “medical diagnosis” but I’m not sure that it does.

NP - almost all private payors require a diagnosis for covered services. That can be done in different ways, and a therapist doesn't necessarily need to render a formal diagnosis of ASD or anxiety or whatever, but the vast majority of insurance companies are going to require that.

PP is right that school testing can't render a diagnosis that can be used for healthcare insurance reimbursement. My DS was "diagnosed" with specific learning disability/dyslexia through school testing, but no insurance company is going to pay for the private dyslexia remediation services we're getting for him.

No that’s just not true that you have to do a pricey private diagnostic evaluation to get any insurance covered services. For most services the provider enters a diagnostic code. I’ve gotten a ton of covered services for my kid prior to the DSM dx. For some services (such as ABA) more would be required. And obviously insurance companies vary.

This is very nuanced. Provider (even OT or PT) will need to do an evaluation with established testing that's appropriate for child's age and suspected deficits. No, they don't just punch in a diagnosis code. They need to conduct and document an evaluation that supports that diagnosis code. It's not free. Yes, it's cheaper than full neurophych but is also very limited to their area of expertise.

Then on insurance side, it's also not so clear cut as you try to paint it (not sure to what purpose?). For example some plans have separate categories for habilitative and Autism services. With different appointment limits.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Thank you for asking this question, and for all the responses. We paid thousands for a diagnosis from someone recommended by our private school this spring, and ended up asking for our money back (eval report was not timely delivered). I am now trying to find ways forward to see how to help our child without feeling like we are being scammed. In our case it seemed that all the person did was administer tests, and was not actually working as a counselor to help children, and it was clear our child has a high IQ and likely (?) dyslexia and possibly (?) borderline ADHD but maybe not (never got the report) and the sense we received from the tester was it was all geared towards getting our extra time and accommodations in school. This was the third person we’ve tried to seek help from, we tried recommended nutritionist and independently a psychiatrist before the school made a suggestion. So even assuming we can find affordable testing, what are good indicators that the results are trustworthy and the administrators are looking out primarily for the child’s welfare? Do you get second opinions? See,s hard to do when it is so expensive. But the responses here have been incredibly helpful and validating the feeling that this should not be so expensive and alternatives exist…even if we have to wait.

I'm sorry you have had bad experiences. I think you might have misaligned expectations, though, as well. Generally the psychologists who administer tests only administer tests. That's their specialty and often their whole practice is administering tests and writing reports. Their reports give the test results and generally offer a list of accommodations (such as extra time) that seem appropriate based on the test results. The psychologist has always met with us after writing the report to discuss and go over the findings. They aren't also the people who will counsel your child.

After having this done, we have taken the report to our child's regular psychiatrist and therapist and school to implement steps from there and decide which accommodations and recommendations make sense. It is that team (and us of course) who are "looking out for the child's welfare."

A nutritionist wouldn't be the right person for this, and probably not a psychiatrist either. You want a psychologist who does testing (a "neuropsych').

Except this provider didn’t actually complete a report. But yes, I do think it’s important for parents to understand that the “neuropsych” is done one a one-off basis by a practitioner with no relationship with your child and who will not generally provide ongoing therapy. As well, many of their recommendations for therapy will be impossible to access, nonexistant, or impossible for the school to implement. It’s a LOT of money to pay just on the faith that recommendations made by someone who doesn’t actually know your kid will be executable. But if all you’re looking for is a piece of paper to get extended time on the SATs, that is likely doable.

This wasn't our experience at all. Recommendations were definitely actionable and very helpful (extra time is not one of the recommendations). And the evaluator did a school observation, had teachers fill out rating scales, spoke extensively with us and her OT, and reviewed documents in addition to the testing so she wasn't just relying on the testing. If anything your comment highlights the importance of working with someone who will do a thorough evaluation, which takes time, and unfortunately working with insurance limits the time they can spend with your child.

Yeah I had people try to sell me on that approach as well. There’s no magic bullet and I prefer to spend my money on actual therapies.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I knew DS had autism since he was little (no one believed me, initially). We paid a reasonable sum, in the hundreds, when he was diagnosed with ADHD by a developmental pediatrician at 6. His MCPS elementary school gave him an IEP due to extremely inattentive behaviors, inability to complete assignments on time, and write: he had group speech, a scribe/aide for writing, pull-outs to finish his work, preferential seating, repeated directions, etc. The works.

We paid Stixrud prices (thousands) for a full neuro when he was 10, because he needed updated data to qualify for MCPS' gifted and learning disabled program. ADHD was confirmed but we were told it would cost extra to explore autism. We chose not to, because he was getting everything he needed with the IEP, predicated on the ADHD. He got into the special program, which turned out great for him.

Only when he was 17 did we return to Stixrud to specifically ask for autism testing (and a reconfirmation of the ADHD), so we could request services and accommodations from colleges. His chosen college's Disability Office assigned him a single room with private bath on the strength of the autism diagnosis.

All this to say, OP, that:

A. You will need to budget money and time for repeated evaluations over the course of his childhood, because most institutions/programs require paperwork that is 4 years old or less. There are waitlists everywhere for testing and some of them can be very long. Make sure to schedule in advance.

B. You can be strategic in your diagnosis targeting, depending how you plan on using that label.

This is not necessary. You can schedule repeated testing at places like Children’s. I was encouraged to schedule serial testing years in advance. You don’t need to pay that much for it. Although I’m sure Stixrud loves your viewpoint!

PP you replied to. You're right, but we have ADHD ourselves and scheduling years in advance is not our strong suit Also, and this is important, not all neuropsych reports are created equal and we REALLY appreciated the doctor we worked with at Stixrud. The reports were extremely detailed, explained so much, and included a page in MCPS-speak of recommended accommodations that no elementary, middle or high school denied us. We had the same success for college accommodations, with the same doctor. It's not the label that opens doors; it's the way the doctor argues for accommodations that often clinches matters for institutions who need to be persuaded to provide those accommodations.

Of course I'm sure Children's and other hospital centers also have psychologists with good writing skills on staff, but they might be more pressed for time. We continued wth Stixrud because you don't change a winning team.

If you have $20k to waste or are set on justifying an accomodation to keep up with the Jonses (eg extended time on the SAT) ok fine. But for those of us who have limited budgets and have to invest in services that our kids need (OT, therapy, tutoring) then no, we cannot pay uneccesary money.

DP - what is the matter with you? Why do you think it's okay to speak to people like this?

what’s wrong with YOU? or better asked, what’s wrong with “providers” who charge SN families $5000 for an incomplete evaluation (like the PP whose kid didn’t even get autism included) or that they could get for an insurance copay elsewhere.

Are you trying to imply I'm a provider falsely representing myself as a parent? I'm not.

Please stop bashing other parents. You are literally achieving nothing.

Obviously not. I’m not bashing parents. I’m bashing the bad advice that you have to spend $1000ss on testing. And I am also bashing the numerous providers happy to take our money, yes.

LOL you implied parents are getting diagnoses to "keep up with the Jones". Stop being a toxic POS.

it happens. I literally just heard about a friend of a friend who was instructed by their kid’s private school to obtain a dx asap. it would be helpful for people advocating lining the pockets of Drs Stixrud and Black to give more information about their financial status, diagnosis, and why they did not rely on school testing, IEE, and/or insurance covered services.

All people on this board have SN kids. You need to do better to be kinder, this tone is out of line and unacceptable.

If you had a child with SN, you would know that 1) school testing cannot give medical diagnosis 2) w/o medical diagnosis a child with disability cannot get insurance coverage for any services 3) places that take insurance have 1-2 year waiting list for both ASD evaluations and full neuropsych. In fact, families that go via private pay route to private providers to get a faster diagnosis don't crowd further the KKI and Childrens waitlists. So it's a good thing.

Schools and Infants and Toddlers have much lower standard for identifying issues too - in speech, OT and physical development. Their evaluations are low quality and services are scarce and frankly also not great quality. People who can afford do private services.

And not that it's any of your business, but HHI is $280K, 5 yo ASD child diagnosed at 2.5 years in private practice.

I think this is wrong about needing a “medical diagnosis” for insurance coverage. We got OT covered without any diagnosis - the OT did their own testing to show the motor skills delays. Also got an amazing course of behavioral therapy covered with no diagnosis. Possibly ABA would require a “medical diagnosis” but I’m not sure that it does.

Fair enough - it doesn't have to be an MD, it can be an OT or SLP for respective areas. HOWEVER, my point still stands. It cannot be a school district employed OT. You need a private provider to evaluate and those who take insurance have super long wait lists. And, OT cannot evaluate ASD/ADHD/anxiety types of conditions, so if that's present, simply going to OT doesn't do anything.

This is just not true in my experience. We have been able to access OT and behavioral therapy relatively easily, and the practioners were quite able to figure out how to bill insurance. Yes there was some waiting but certainly, delaying the necessary therapies until we got the “neuropsych” would not have helped anything. We did eventually get a dx (from KKI) but the OT and behavioral therapy (and IEP under the developmental delay category) we got with no dx were probably among the most useful therapies we have done over the long haul.

you clearly have a reding comprehension issue and that's ok. to each their own.