ASD evaluation without selling a kidney

[Anonymous]

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.

[Anonymous]

Are there specific concerns you’re having OP or just need the diagnosis for funding sources or IEP, etc?

If you don’t really care about the diagnosis then focus on the behaviors of concern that you want to change. Most professionals will do individual assessments, though they wouldn’t be diagnostic in nature. For example a social skills assessments, ADL assessment, reading assessment, expressive or receptive language, behavioral, barriers to learning, etc. You will still be spending money but it will be focused on changing the behavior rather than labeling it.

[Anonymous]

As others have said, KKI and Children's.

FWIW, you're not alone. We were in your situation when we first had our son tested privately - the ADHD was so severe they said his ADOS results could either be ASD or the severe ADHD so we should retest once his ADHD was controlled by medication. At that time we went ahead and put him on the KKI waitlist. We received a call almost a year to the day and it moved pretty quickly after that.

[Anonymous]

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.

[Anonymous]

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.

[Anonymous]

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.

[Anonymous]

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.

[Anonymous]

MASON
https://ccmh.gmu.edu/services/testing

[Anonymous]

Get on the waitlist for KKI and call every month for cancellations.

CAAT can do ASD eval w/o full neuropsych. ADOS-2 test is what you need to determine ASD diagnosis.

I've seen some SLPs put on their credentials that they are certified to administer ADOS. I haven't explored it further though.

School testing is variable in quality but the main thing is that they cannot give a medical diagnosis. If you need a diagnosis to unlock access to services covered by insurance (OT, ST, behavioral) you need a diagnosis on the medical record. School cannot do it.

In the end, we went with CAAT and luckily had out of network benefits to ease the pain of $$$.

[Anonymous]

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.

[Anonymous]

Anonymous wrote:Get on the waitlist for KKI and call every month for cancellations.

CAAT can do ASD eval w/o full neuropsych. ADOS-2 test is what you need to determine ASD diagnosis.

I've seen some SLPs put on their credentials that they are certified to administer ADOS. I haven't explored it further though.

School testing is variable in quality but the main thing is that they cannot give a medical diagnosis. If you need a diagnosis to unlock access to services covered by insurance (OT, ST, behavioral) you need a diagnosis on the medical record. School cannot do it.

In the end, we went with CAAT and luckily had out of network benefits to ease the pain of $$$.

do you need a “medical diagnosis” to get services covered? I feel like if you showed an OT or ST the ADOS result from the school evaluation, they could just code the services as for autism. as far as I can recall I never had to prove the diagnosis to any OT or to insurance; it was just coded as such.

[Anonymous]

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.

[Anonymous]

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.

[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.

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

[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.

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.