ASD evaluation without selling a kidney

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Can I just say it is so crazy that we have to pay thousands for evaluations when they won't even test for autism unless you go to someone specialized in autism and/or pay extra? What is the role of the evaluator if the family has to come in already knowing what diagnosis they need? Is it really that difficult for a doctoral level professional who evaluates people for a living to administer the ADOS?

It’s crazy because they are money-making operations exploiting the desperation of parents. Just put your name on the list at Childrens, KKI and Mt Washington. School testing is also very good, contrary to beliefs here, and they’re supposed to repeat it every 3 years. We had school testing followed by Children’s testing a year later and the school report was actually more insightful.

It's not just beliefs. We had a provider, who is an amazing provider herself and whom I have an enormous amount of trust and respect for and is not affiliated with any other practices, say that the reports she read from Children's and KKI were not great. Very cut and paste.

Also, this is kid dependent. Girls have a tendency not to get diagnosed with ASD until much later than boys despite similar symptoms. Mine was definitely at risk of being in that boat. DD may not get an IEP anytime soon but the diagnosis and detailed report is so helpful.

That’s one person’s opinion. The road of SN parenting is long, and we cannot shell out $1000ss every time someone claims “this is the gold standard!” A Childrens or KKI evaluation is going to be absolutely adequate for diagnosing autism. Everything else in the report (suggested accommodations, educational impact) tends to be guesswork anyway. For designing individual accomodations it’s much better to have an educational consultant with an education background who can help with the IEP. And even with that, the needs are going to change over time, and it’s always an ongoing process to see what works. No matter how many times you pay Stixrud or CAAT or whatever $5000 for a “full neuropsych,” they cannot “prescribe” an IEP or set of therapies that is going to work on that one-off basis.

I mean you talking about parents that use private providers with an enormous amount of disdain and insist anyone who thinks differently than you just has incorrect beliefs or reflect "one person's opinion" while you seem to think you know everything. I have a friend whose kid got diagnosed through an IEE and they were very lost in terms of the recommendations because they were not appropriate for the kid. They had also had an IEP for almost 2 years before they got diagnosed, which is 2 years of not receiving appropriate services.

Yeah and none of that is solved by paying Stixrud or CAAT $5000 every 3 years for something you can get for free or a copay. If you have the money to spare, sure, maybe it’s a value add. But most of us do not, and should not be misled into believing that it’s the only way.

As for advice on accomodations - there’s zero reason this has to be bundled with the testing. The tester sees your kid for a few hours and makes some guesses (informed) on accommodations; then no doubt you’ll have to pay more to get them to review the IEP, meet with the school, and monitor progress. If you feel you need support in designing accommodations, get the diagnosis as cheaply as possible then advice on accommodations a la carte. Our ed consultant charges MUCH less and provides many more hours of actual services.

Yes, paying for a private evaluation can mean a faster diagnosis and can mean better, more individualized advice on supportive services and accommodations. It did for us, so yes it was "solved" by paying a private provider thousands. I never said it was the only way, but I do think for certain kids with atypical presentations of ASD or ADHD, it might be the best way. I don't know, I can only speak to our own experience and say that it's been really beneficial for us. I fully recognize the cost is out of reach for many families and I think that's horrible and insurance needs to cover good neuropsychs that can be provided in a timely fashion.

insurance doesn’t pay for “neuropsychs” for all on demand because often that level of testing is overkill. And you can get school testing on a defined timeline, then an IEE if you disagree.

[Anonymous]

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.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Can I just say it is so crazy that we have to pay thousands for evaluations when they won't even test for autism unless you go to someone specialized in autism and/or pay extra? What is the role of the evaluator if the family has to come in already knowing what diagnosis they need? Is it really that difficult for a doctoral level professional who evaluates people for a living to administer the ADOS?

It’s crazy because they are money-making operations exploiting the desperation of parents. Just put your name on the list at Childrens, KKI and Mt Washington. School testing is also very good, contrary to beliefs here, and they’re supposed to repeat it every 3 years. We had school testing followed by Children’s testing a year later and the school report was actually more insightful.

It's not just beliefs. We had a provider, who is an amazing provider herself and whom I have an enormous amount of trust and respect for and is not affiliated with any other practices, say that the reports she read from Children's and KKI were not great. Very cut and paste.

Also, this is kid dependent. Girls have a tendency not to get diagnosed with ASD until much later than boys despite similar symptoms. Mine was definitely at risk of being in that boat. DD may not get an IEP anytime soon but the diagnosis and detailed report is so helpful.

That’s one person’s opinion. The road of SN parenting is long, and we cannot shell out $1000ss every time someone claims “this is the gold standard!” A Childrens or KKI evaluation is going to be absolutely adequate for diagnosing autism. Everything else in the report (suggested accommodations, educational impact) tends to be guesswork anyway. For designing individual accomodations it’s much better to have an educational consultant with an education background who can help with the IEP. And even with that, the needs are going to change over time, and it’s always an ongoing process to see what works. No matter how many times you pay Stixrud or CAAT or whatever $5000 for a “full neuropsych,” they cannot “prescribe” an IEP or set of therapies that is going to work on that one-off basis.

I mean you talking about parents that use private providers with an enormous amount of disdain and insist anyone who thinks differently than you just has incorrect beliefs or reflect "one person's opinion" while you seem to think you know everything. I have a friend whose kid got diagnosed through an IEE and they were very lost in terms of the recommendations because they were not appropriate for the kid. They had also had an IEP for almost 2 years before they got diagnosed, which is 2 years of not receiving appropriate services.

Yeah and none of that is solved by paying Stixrud or CAAT $5000 every 3 years for something you can get for free or a copay. If you have the money to spare, sure, maybe it’s a value add. But most of us do not, and should not be misled into believing that it’s the only way.

As for advice on accomodations - there’s zero reason this has to be bundled with the testing. The tester sees your kid for a few hours and makes some guesses (informed) on accommodations; then no doubt you’ll have to pay more to get them to review the IEP, meet with the school, and monitor progress. If you feel you need support in designing accommodations, get the diagnosis as cheaply as possible then advice on accommodations a la carte. Our ed consultant charges MUCH less and provides many more hours of actual services.

Yes, paying for a private evaluation can mean a faster diagnosis and can mean better, more individualized advice on supportive services and accommodations. It did for us, so yes it was "solved" by paying a private provider thousands. I never said it was the only way, but I do think for certain kids with atypical presentations of ASD or ADHD, it might be the best way. I don't know, I can only speak to our own experience and say that it's been really beneficial for us. I fully recognize the cost is out of reach for many families and I think that's horrible and insurance needs to cover good neuropsychs that can be provided in a timely fashion.

cf the thread on why all private school kids have diagnoses 😂 because they pay for it for their “atypical” presentations

[Anonymous]

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.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Can I just say it is so crazy that we have to pay thousands for evaluations when they won't even test for autism unless you go to someone specialized in autism and/or pay extra? What is the role of the evaluator if the family has to come in already knowing what diagnosis they need? Is it really that difficult for a doctoral level professional who evaluates people for a living to administer the ADOS?

It’s crazy because they are money-making operations exploiting the desperation of parents. Just put your name on the list at Childrens, KKI and Mt Washington. School testing is also very good, contrary to beliefs here, and they’re supposed to repeat it every 3 years. We had school testing followed by Children’s testing a year later and the school report was actually more insightful.

It's not just beliefs. We had a provider, who is an amazing provider herself and whom I have an enormous amount of trust and respect for and is not affiliated with any other practices, say that the reports she read from Children's and KKI were not great. Very cut and paste.

Also, this is kid dependent. Girls have a tendency not to get diagnosed with ASD until much later than boys despite similar symptoms. Mine was definitely at risk of being in that boat. DD may not get an IEP anytime soon but the diagnosis and detailed report is so helpful.

That’s one person’s opinion. The road of SN parenting is long, and we cannot shell out $1000ss every time someone claims “this is the gold standard!” A Childrens or KKI evaluation is going to be absolutely adequate for diagnosing autism. Everything else in the report (suggested accommodations, educational impact) tends to be guesswork anyway. For designing individual accomodations it’s much better to have an educational consultant with an education background who can help with the IEP. And even with that, the needs are going to change over time, and it’s always an ongoing process to see what works. No matter how many times you pay Stixrud or CAAT or whatever $5000 for a “full neuropsych,” they cannot “prescribe” an IEP or set of therapies that is going to work on that one-off basis.

I mean you talking about parents that use private providers with an enormous amount of disdain and insist anyone who thinks differently than you just has incorrect beliefs or reflect "one person's opinion" while you seem to think you know everything. I have a friend whose kid got diagnosed through an IEE and they were very lost in terms of the recommendations because they were not appropriate for the kid. They had also had an IEP for almost 2 years before they got diagnosed, which is 2 years of not receiving appropriate services.

Yeah and none of that is solved by paying Stixrud or CAAT $5000 every 3 years for something you can get for free or a copay. If you have the money to spare, sure, maybe it’s a value add. But most of us do not, and should not be misled into believing that it’s the only way.

As for advice on accomodations - there’s zero reason this has to be bundled with the testing. The tester sees your kid for a few hours and makes some guesses (informed) on accommodations; then no doubt you’ll have to pay more to get them to review the IEP, meet with the school, and monitor progress. If you feel you need support in designing accommodations, get the diagnosis as cheaply as possible then advice on accommodations a la carte. Our ed consultant charges MUCH less and provides many more hours of actual services.

Yes, paying for a private evaluation can mean a faster diagnosis and can mean better, more individualized advice on supportive services and accommodations. It did for us, so yes it was "solved" by paying a private provider thousands. I never said it was the only way, but I do think for certain kids with atypical presentations of ASD or ADHD, it might be the best way. I don't know, I can only speak to our own experience and say that it's been really beneficial for us. I fully recognize the cost is out of reach for many families and I think that's horrible and insurance needs to cover good neuropsychs that can be provided in a timely fashion.

cf the thread on why all private school kids have diagnoses 😂 because they pay for it for their “atypical” presentations

Are you laughing at my kid's diagnosis? Like literally what tf is wrong with some people?

[Anonymous]

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.

[Anonymous]

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.

[Anonymous]

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.

Please realize you are being a little hurtful here to families who have kids with serious problems. No doubt this stems from struggling with this yourself.

I am the PP. We do not have a high income. We put money into this and not fancy vacations or a big house. Our cars are 19 and 14 years old. Our kids are in public school, and YES, one needed expensive therapies, medications and one-on-one tutoring. This is a priority for us, and as I explained, after one excellent experience when DS was 10, we chose to stick with this company when he was 17. The first was 3.2K, the second was 5K. Money well spent, no education consultant needed, all IEP meetings went smoothly, no fighting. For parents like us with ADHD, we thought it was worth it.

I don't know why you assume that people who pay for private neuropsych are just doing this for frivolous reasons. They're not.

[Anonymous]

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.

Please realize you are being a little hurtful here to families who have kids with serious problems. No doubt this stems from struggling with this yourself.

I am the PP. We do not have a high income. We put money into this and not fancy vacations or a big house. Our cars are 19 and 14 years old. Our kids are in public school, and YES, one needed expensive therapies, medications and one-on-one tutoring. This is a priority for us, and as I explained, after one excellent experience when DS was 10, we chose to stick with this company when he was 17. The first was 3.2K, the second was 5K. Money well spent, no education consultant needed, all IEP meetings went smoothly, no fighting. For parents like us with ADHD, we thought it was worth it.

I don't know why you assume that people who pay for private neuropsych are just doing this for frivolous reasons. They're not.

It’s unethical to argue for this, full stop.

[Anonymous]

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.

Our HHI is around $290k
5 yo DD's diagnosis is ASD
We did not rely on school testing or practices that take insurance because:
- Our experiences with Child Find were abominably bad and just like you behave, they were very disrespectful towards us
- A trusted provider warned us these evaluations may not be as thorough or be able to tease out the issues correctly
- We wanted clarity on our child's issues before she started kindergarten
- We were able to switch to an insurance plan with generous out of network coverage (so it ended up costing us closer to $1k)

[Anonymous]

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.

Please realize you are being a little hurtful here to families who have kids with serious problems. No doubt this stems from struggling with this yourself.

I am the PP. We do not have a high income. We put money into this and not fancy vacations or a big house. Our cars are 19 and 14 years old. Our kids are in public school, and YES, one needed expensive therapies, medications and one-on-one tutoring. This is a priority for us, and as I explained, after one excellent experience when DS was 10, we chose to stick with this company when he was 17. The first was 3.2K, the second was 5K. Money well spent, no education consultant needed, all IEP meetings went smoothly, no fighting. For parents like us with ADHD, we thought it was worth it.

I don't know why you assume that people who pay for private neuropsych are just doing this for frivolous reasons. They're not.

It’s unethical to argue for this, full stop.

You've said this on these boards before, and no it is not unethical, gtfooh

[Anonymous]

We have had 3 neuropsychs for 2 different kids. The first one, we put on a credit card and paid it off over two years. My kid was in crisis, failing all classes and we needed to make some fast, well-informed decisions. It was the best money I have spent on this journey. We had a 40 page report and the psychologist spent many hours with us. The second one, different DC, we waited on the Children’s waitlist for a year and a half. That one was helpful but didn’t flesh out the full picture and DC continued to struggle intensely in school. So for the third one, we went to a private practice again and also put it on a credit card and paid it off over time. And again, it was the best investment we made as it changed our paths of therapy, school options, and medication. I’m not going to describe the diagnoses - my kids have pretty significant issues and we have spent all of our limited resources on helping them get to the next step. The testing was a huge stretch for us, but IMO an investment that guided future decisions.

[Anonymous]

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.

[Anonymous]

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.

[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 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.