Is neuropsych needed in our case

[Anonymous]

DS is 10, and had speech delays for which he was in IEP. We suspected autism, due to the language and rigidity and lack of some social skills. We had 3 ADOS, two of which said he is NOT on spectrum (school and private) , and one which said he was (KKI, but that SLP was very unprofessional).
Either ways he has caught up in speech and reading, is at grade level in a mainstreamed classroom in FCPS, and is out of his IEP.
He has extreme disparity between verbal (way below average) and non verbal (he is two to three grades above), on all testing that has been done

He does have a 504 for anxiety around fire drills and extra time for writing. We did CBT 2 years ago, and that helped him overcome his school avoidance over fire drills, but he still needs to be taken out before the fire drill.

Since he was a child he used to have long defiant temper tantrums (atleast 30 mins to sometimes upto 2 hrs), it was almost daily till he was 5, and then reduced in frequency. Now he has an outburst once in 10 days to 2 weeks, but his intensity is much higher, meaning he cries loudly and throws things around. He is the sweetest and most helpful kid once he calms down, and there is no real trigger for his outbursts. For example something that he does voluntarily and routinely for 10 days, makes him explode on the 11th day. Or sometimes it is due to another kid's behavior at school.
This ONLY happens at home. And these outbursts happen like a cycle regularly once between 10-15 days.

We took him to a psychologist for behavior management, with whom we had done CBT before, she said she suspects autism and wants ADOS done. Now I called Children's and they recommended doing both ADOS and neurospych (for anxiety and learning disparity). Psychologist thinks neurospych is of no value and we should do only ADOS.

So my question is, given that he has a mix of past and current issues-Speech/language, verbal and non verbal learning disparity, anxiety, defiance... is neuropsych going to provide any value? For that matter, will ADOS even provide any value? Right now his angry defiance at home is our main concern.

[Anonymous]

As a parent, I would do the neuropsych, especially given the early language issues and the wide disparity between verbal and non-verbal ability.

IME with our DS, the neuropsych really teased apart areas where he had widely disparate abilities - 99%ile math reasoning but 30%ile math fluency. He was extremely bright but underlying brain/neuropsych problems like slow processing and word finding difficulty and dysgraphia made doing computations with nevessary speed and accuracy ver difficult.

DS noticed how he could not do things like other kids and he became angry, depressed and anxious. Two years of special instructions, tutors, and self-education about how his brain works has returned our happy optimistic boy to us.

Neuropsych was the key to understanding his strengths and weaknesses. Without it, they just masked each other and he looked like an average kid with mood problems.

[Anonymous]

Anonymous wrote:As a parent, I would do the neuropsych, especially given the early language issues and the wide disparity between verbal and non-verbal ability.

IME with our DS, the neuropsych really teased apart areas where he had widely disparate abilities - 99%ile math reasoning but 30%ile math fluency. He was extremely bright but underlying brain/neuropsych problems like slow processing and word finding difficulty and dysgraphia made doing computations with nevessary speed and accuracy ver difficult.

DS noticed how he could not do things like other kids and he became angry, depressed and anxious. Two years of special instructions, tutors, and self-education about how his brain works has returned our happy optimistic boy to us.

Neuropsych was the key to understanding his strengths and weaknesses. Without it, they just masked each other and he looked like an average kid with mood problems.

Great, thanks. Yes anything that can help us better understand him, and make him more self aware is going to help. Infact I am thinking neuropysch would be as valuable as ADOS if not more.

Our psychologist also mentioned cost as one reason not to got for it, saying it will run into thousands of dollars to tell us what we already know about his anxiety.

Do you mind sharing who you did it with and what was cost? Childrens has atleast a 6 month wait for neuro and 9 months for ADOS.

[Anonymous]

NP. We used Mindwell for a neuropsych and it cost about $3600 (insurance later reimbursed about $500).

Had we gone to Children's it would have cost us $300 out of pocket. Unfortunately we had a time crunch and couldn't wait.

But it depends on your insurance policy.

[Anonymous]

Anonymous wrote:NP. We used Mindwell for a neuropsych and it cost about $3600 (insurance later reimbursed about $500).

Had we gone to Children's it would have cost us $300 out of pocket. Unfortunately we had a time crunch and couldn't wait.

But it depends on your insurance policy.

Thanks did you find the neuropsych helpful, if you dont mind sharing, what was diagnosis and treatment?

[Anonymous]

What is another ADOS going to prove, though? I know people think it's the be-all end-all here, but it looks like it will be inconclusive in your case since you already have mixed results with THREE of them. I've never heard of someone having ADOS tests before.

You need someone skilled in the art if differential diagnosis. Not someone who has decided your child has autism, and is looking for a new ADOS to confirm.

[Anonymous]

having three ADOS tests before ^^^^

[Anonymous]

Anonymous wrote:

Anonymous wrote:NP. We used Mindwell for a neuropsych and it cost about $3600 (insurance later reimbursed about $500).

Had we gone to Children's it would have cost us $300 out of pocket. Unfortunately we had a time crunch and couldn't wait.

But it depends on your insurance policy.

Thanks did you find the neuropsych helpful, if you dont mind sharing, what was diagnosis and treatment?

Yes, neuropsych was really helpful. We have done them 3 times (child is now 15).

Diagnoses are ADHD, anxiety disorder, developmental coordination disorder. Also has resolved speech/language issues -- not diagnosed by neuropsych but referenced and the latent issues show up in some of the academic testing.

[Anonymous]

Anonymous wrote:

Anonymous wrote:As a parent, I would do the neuropsych, especially given the early language issues and the wide disparity between verbal and non-verbal ability.

IME with our DS, the neuropsych really teased apart areas where he had widely disparate abilities - 99%ile math reasoning but 30%ile math fluency. He was extremely bright but underlying brain/neuropsych problems like slow processing and word finding difficulty and dysgraphia made doing computations with nevessary speed and accuracy ver difficult.

DS noticed how he could not do things like other kids and he became angry, depressed and anxious. Two years of special instructions, tutors, and self-education about how his brain works has returned our happy optimistic boy to us.

Neuropsych was the key to understanding his strengths and weaknesses. Without it, they just masked each other and he looked like an average kid with mood problems.

Great, thanks. Yes anything that can help us better understand him, and make him more self aware is going to help. Infact I am thinking neuropysch would be as valuable as ADOS if not more.

Our psychologist also mentioned cost as one reason not to got for it, saying it will run into thousands of dollars to tell us what we already know about his anxiety.

Do you mind sharing who you did it with and what was cost? Childrens has atleast a 6 month wait for neuro and 9 months for ADOS.

In general, neuropsych is $3000+.

Your psych's dismissal of this is a red flag to me. Neuropsych provides objective data and rules out other diagnoses (learning disabilities or issues, processing speed or memory problems). Particularly with anxiety, it is important to consider what could be causing the anxiety -- underlying biochemistry? learning differences? speed or memory problems? language issues? Difficulties in all those areas can cause anxiety, and in order to address the anxiety, you would have to address the underlying issues also not just medicate or do therapy.

Check what your insurance might reimburse. If you can't afford it, consider what the school can do. If your child is 10 and was in an IEP, he should have had a full psychological assessment which should have included IQ, full achievement testing, plus language, autism, ADHD and anxiety and depression and a functional behavior assessment. He should have had this when he entered the IEP and before he was moved from the IEP to the 504 plan. Do you have these results? How recent are they? Sometimes schools try to skimp on testing, but legally, they are obliged to do it if you are requesting an IEP and every 3 years on the IEP and if you have a "reasonable suspicion of disability" (i.e. a disorder, adverse educational impact and need for special instruction). Schools skimp by doing just one or two tests or substituting "observation" for actual standardized objective testing.

If the school does the testing (which would be psych only as they typically do not have nueropsych resources), and you disagree with the results you have a right to ask the school system to pay for an IEE (independent educational evaluation) at a provider of your choice. The main difference with the psych assessment and the neuropsych assessment is that the neuropsych typically does additional computer-based or standardized attention and executive function testing, not just behavioral checklists.

[Anonymous]

Anonymous wrote:

What is another ADOS going to prove, though? I know people think it's the be-all end-all here, but it looks like it will be inconclusive in your case since you already have mixed results with THREE of them. I've never heard of someone having ADOS tests before.

You need someone skilled in the art if differential diagnosis. Not someone who has decided your child has autism, and is looking for a new ADOS to confirm.

OP here thanks and agreed, I was actually looking for behavior management CBT, but the psychologist thinks that he is on spectrum and so if his anger/defiance is due to spectrum (lack of flexibility maybe?), he needs to be treated by individuals who specialize in spectrum disorders instead of her.

ADOS as I have seen three times is very subjective, especially for a kid like him who is on the border.

So who would be this person who does differential diagnosis?

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:As a parent, I would do the neuropsych, especially given the early language issues and the wide disparity between verbal and non-verbal ability.

IME with our DS, the neuropsych really teased apart areas where he had widely disparate abilities - 99%ile math reasoning but 30%ile math fluency. He was extremely bright but underlying brain/neuropsych problems like slow processing and word finding difficulty and dysgraphia made doing computations with nevessary speed and accuracy ver difficult.

DS noticed how he could not do things like other kids and he became angry, depressed and anxious. Two years of special instructions, tutors, and self-education about how his brain works has returned our happy optimistic boy to us.

Neuropsych was the key to understanding his strengths and weaknesses. Without it, they just masked each other and he looked like an average kid with mood problems.

Great, thanks. Yes anything that can help us better understand him, and make him more self aware is going to help. Infact I am thinking neuropysch would be as valuable as ADOS if not more.

Our psychologist also mentioned cost as one reason not to got for it, saying it will run into thousands of dollars to tell us what we already know about his anxiety.

Do you mind sharing who you did it with and what was cost? Childrens has atleast a 6 month wait for neuro and 9 months for ADOS.

In general, neuropsych is $3000+.

Your psych's dismissal of this is a red flag to me. Neuropsych provides objective data and rules out other diagnoses (learning disabilities or issues, processing speed or memory problems). Particularly with anxiety, it is important to consider what could be causing the anxiety -- underlying biochemistry? learning differences? speed or memory problems? language issues? Difficulties in all those areas can cause anxiety, and in order to address the anxiety, you would have to address the underlying issues also not just medicate or do therapy.

Check what your insurance might reimburse. If you can't afford it, consider what the school can do. If your child is 10 and was in an IEP, he should have had a full psychological assessment which should have included IQ, full achievement testing, plus language, autism, ADHD and anxiety and depression and a functional behavior assessment. He should have had this when he entered the IEP and before he was moved from the IEP to the 504 plan. Do you have these results? How recent are they? Sometimes schools try to skimp on testing, but legally, they are obliged to do it if you are requesting an IEP and every 3 years on the IEP and if you have a "reasonable suspicion of disability" (i.e. a disorder, adverse educational impact and need for special instruction). Schools skimp by doing just one or two tests or substituting "observation" for actual standardized objective testing.

If the school does the testing (which would be psych only as they typically do not have nueropsych resources), and you disagree with the results you have a right to ask the school system to pay for an IEE (independent educational evaluation) at a provider of your choice. The main difference with the psych assessment and the neuropsych assessment is that the neuropsych typically does additional computer-based or standardized attention and executive function testing, not just behavioral checklists.

OP here, thanks.
I am fine with the 3K, we have high deductible but can pay out of pocket. It was the psychologist who said it is pointless to do as it will cost thousands to learn what we already know.
And for anxiety we did not medicate, but he has not overcome his anxiety either by exposure to the alarm sounds.

Thanks again, it is really hopeful that neuropsych gives more objective assessment than ADOS we have had in the past.

He was just discharged of IEP this year, the school did educational-Kaufman and one other, classroom observation, socio cultural tests in Jan. All seem clear. And yes they did this every 3 years in FCPS, and gave him speech and reading support, and lunch bunch/social skills. Based on education, now he is on grade, so they closed IEP. No ADHD or autism flags, reading on grade. Over and over again he shows higher in non verbal than verbal. We dont have any grounds to dispute them since his only issue (atleast the one he displays) at school is the fire drills and they are providing 504. They are also continuing lunch bunch.

Our main issue is anger/defiance at home. But appears neuropsych can help us help him in areas he is just getting by as well and could possibly be doing much better if we could get to the root cause of his anxiety and anger.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:NP. We used Mindwell for a neuropsych and it cost about $3600 (insurance later reimbursed about $500).

Had we gone to Children's it would have cost us $300 out of pocket. Unfortunately we had a time crunch and couldn't wait.

But it depends on your insurance policy.

Thanks did you find the neuropsych helpful, if you dont mind sharing, what was diagnosis and treatment?

Yes, neuropsych was really helpful. We have done them 3 times (child is now 15).

Diagnoses are ADHD, anxiety disorder, developmental coordination disorder. Also has resolved speech/language issues -- not diagnosed by neuropsych but referenced and the latent issues show up in some of the academic testing.

Any reason why you had to do it 3 times, if for same kid? were results same each time?

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:As a parent, I would do the neuropsych, especially given the early language issues and the wide disparity between verbal and non-verbal ability.

IME with our DS, the neuropsych really teased apart areas where he had widely disparate abilities - 99%ile math reasoning but 30%ile math fluency. He was extremely bright but underlying brain/neuropsych problems like slow processing and word finding difficulty and dysgraphia made doing computations with nevessary speed and accuracy ver difficult.

DS noticed how he could not do things like other kids and he became angry, depressed and anxious. Two years of special instructions, tutors, and self-education about how his brain works has returned our happy optimistic boy to us.

Neuropsych was the key to understanding his strengths and weaknesses. Without it, they just masked each other and he looked like an average kid with mood problems.

Great, thanks. Yes anything that can help us better understand him, and make him more self aware is going to help. Infact I am thinking neuropysch would be as valuable as ADOS if not more.

Our psychologist also mentioned cost as one reason not to got for it, saying it will run into thousands of dollars to tell us what we already know about his anxiety.

Do you mind sharing who you did it with and what was cost? Childrens has atleast a 6 month wait for neuro and 9 months for ADOS.

In general, neuropsych is $3000+.

Your psych's dismissal of this is a red flag to me. Neuropsych provides objective data and rules out other diagnoses (learning disabilities or issues, processing speed or memory problems). Particularly with anxiety, it is important to consider what could be causing the anxiety -- underlying biochemistry? learning differences? speed or memory problems? language issues? Difficulties in all those areas can cause anxiety, and in order to address the anxiety, you would have to address the underlying issues also not just medicate or do therapy.

Check what your insurance might reimburse. If you can't afford it, consider what the school can do. If your child is 10 and was in an IEP, he should have had a full psychological assessment which should have included IQ, full achievement testing, plus language, autism, ADHD and anxiety and depression and a functional behavior assessment. He should have had this when he entered the IEP and before he was moved from the IEP to the 504 plan. Do you have these results? How recent are they? Sometimes schools try to skimp on testing, but legally, they are obliged to do it if you are requesting an IEP and every 3 years on the IEP and if you have a "reasonable suspicion of disability" (i.e. a disorder, adverse educational impact and need for special instruction). Schools skimp by doing just one or two tests or substituting "observation" for actual standardized objective testing.

If the school does the testing (which would be psych only as they typically do not have nueropsych resources), and you disagree with the results you have a right to ask the school system to pay for an IEE (independent educational evaluation) at a provider of your choice. The main difference with the psych assessment and the neuropsych assessment is that the neuropsych typically does additional computer-based or standardized attention and executive function testing, not just behavioral checklists.

OP here, thanks.
I am fine with the 3K, we have high deductible but can pay out of pocket. It was the psychologist who said it is pointless to do as it will cost thousands to learn what we already know.
And for anxiety we did not medicate, but he has not overcome his anxiety either by exposure to the alarm sounds.

Thanks again, it is really hopeful that neuropsych gives more objective assessment than ADOS we have had in the past.

He was just discharged of IEP this year, the school did educational-Kaufman and one other, classroom observation, socio cultural tests in Jan. All seem clear. And yes they did this every 3 years in FCPS, and gave him speech and reading support, and lunch bunch/social skills. Based on education, now he is on grade, so they closed IEP. No ADHD or autism flags, reading on grade. Over and over again he shows higher in non verbal than verbal. We dont have any grounds to dispute them since his only issue (atleast the one he displays) at school is the fire drills and they are providing 504. They are also continuing lunch bunch.

Our main issue is anger/defiance at home. But appears neuropsych can help us help him in areas he is just getting by as well and could possibly be doing much better if we could get to the root cause of his anxiety and anger.

NP. I agree with starting with the neuropsych as I am not sure what a 4th ADOS will tell you. If it comes out positive you will have 2 yes and 2 no...what the heck does that mean? FTR, I have a "spectrumy" language delayed child whose first ADOS was a no, though I don't entirely believe it. I have thought about another but we are already getting him the services we would if he had a diagnosis, so I am saving the money for now. BUT, when we need a psychologist or speech person I make sure they have experience with autism because I think therapists who are educated about autism are better at understanding the impact language/social/sensory difficulties can have and approach their therapy accordingly. Regardless of your child's dx, maybe a therapist who doesn't feel like autism is out of her range of expertise might be better for him, since he does have the history of language delay. Just because someone has training in psychopathology, like anxiety, doesn't mean that they've had any training in developmental issues.

Of course, one reason to consider an ADOS down the road might be to help get school services, but you may be able to do that with your neuropsych. Or if the neuropsychologist says that they really need an ADOS to have a complete picture, then it might be worthwhile to do it.

Also, I wanted to ask if you saw an increase in the behavior problems at home after his IEP was pulled. I am not sure what services he was getting before but where I live it is not uncommon for kids to be exited from services "because they are doing so well" without any thought given to the fact that it is the supports and services that are enabling them to do so well. It is also not uncommon for kids who are struggling in school to keep it together all day but then go home and lose their sh*t. If there really is no rhyme or reason to your son's behavior at home it might be related to anxiety/stress from school.

[Anonymous]

I would start with individual/family therapy and maybe try medication for the anxiety first.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:As a parent, I would do the neuropsych, especially given the early language issues and the wide disparity between verbal and non-verbal ability.

IME with our DS, the neuropsych really teased apart areas where he had widely disparate abilities - 99%ile math reasoning but 30%ile math fluency. He was extremely bright but underlying brain/neuropsych problems like slow processing and word finding difficulty and dysgraphia made doing computations with nevessary speed and accuracy ver difficult.

DS noticed how he could not do things like other kids and he became angry, depressed and anxious. Two years of special instructions, tutors, and self-education about how his brain works has returned our happy optimistic boy to us.

Neuropsych was the key to understanding his strengths and weaknesses. Without it, they just masked each other and he looked like an average kid with mood problems.

Great, thanks. Yes anything that can help us better understand him, and make him more self aware is going to help. Infact I am thinking neuropysch would be as valuable as ADOS if not more.

Our psychologist also mentioned cost as one reason not to got for it, saying it will run into thousands of dollars to tell us what we already know about his anxiety.

Do you mind sharing who you did it with and what was cost? Childrens has atleast a 6 month wait for neuro and 9 months for ADOS.

In general, neuropsych is $3000+.

Your psych's dismissal of this is a red flag to me. Neuropsych provides objective data and rules out other diagnoses (learning disabilities or issues, processing speed or memory problems). Particularly with anxiety, it is important to consider what could be causing the anxiety -- underlying biochemistry? learning differences? speed or memory problems? language issues? Difficulties in all those areas can cause anxiety, and in order to address the anxiety, you would have to address the underlying issues also not just medicate or do therapy.

Check what your insurance might reimburse. If you can't afford it, consider what the school can do. If your child is 10 and was in an IEP, he should have had a full psychological assessment which should have included IQ, full achievement testing, plus language, autism, ADHD and anxiety and depression and a functional behavior assessment. He should have had this when he entered the IEP and before he was moved from the IEP to the 504 plan. Do you have these results? How recent are they? Sometimes schools try to skimp on testing, but legally, they are obliged to do it if you are requesting an IEP and every 3 years on the IEP and if you have a "reasonable suspicion of disability" (i.e. a disorder, adverse educational impact and need for special instruction). Schools skimp by doing just one or two tests or substituting "observation" for actual standardized objective testing.

If the school does the testing (which would be psych only as they typically do not have nueropsych resources), and you disagree with the results you have a right to ask the school system to pay for an IEE (independent educational evaluation) at a provider of your choice. The main difference with the psych assessment and the neuropsych assessment is that the neuropsych typically does additional computer-based or standardized attention and executive function testing, not just behavioral checklists.

OP here, thanks.
I am fine with the 3K, we have high deductible but can pay out of pocket. It was the psychologist who said it is pointless to do as it will cost thousands to learn what we already know.
And for anxiety we did not medicate, but he has not overcome his anxiety either by exposure to the alarm sounds.

Thanks again, it is really hopeful that neuropsych gives more objective assessment than ADOS we have had in the past.

He was just discharged of IEP this year, the school did educational-Kaufman and one other, classroom observation, socio cultural tests in Jan. All seem clear. And yes they did this every 3 years in FCPS, and gave him speech and reading support, and lunch bunch/social skills. Based on education, now he is on grade, so they closed IEP. No ADHD or autism flags, reading on grade. Over and over again he shows higher in non verbal than verbal. We dont have any grounds to dispute them since his only issue (atleast the one he displays) at school is the fire drills and they are providing 504. They are also continuing lunch bunch.

Our main issue is anger/defiance at home. But appears neuropsych can help us help him in areas he is just getting by as well and could possibly be doing much better if we could get to the root cause of his anxiety and anger.

NP. I agree with starting with the neuropsych as I am not sure what a 4th ADOS will tell you. If it comes out positive you will have 2 yes and 2 no...what the heck does that mean? FTR, I have a "spectrumy" language delayed child whose first ADOS was a no, though I don't entirely believe it. I have thought about another but we are already getting him the services we would if he had a diagnosis, so I am saving the money for now. BUT, when we need a psychologist or speech person I make sure they have experience with autism because I think therapists who are educated about autism are better at understanding the impact language/social/sensory difficulties can have and approach their therapy accordingly. Regardless of your child's dx, maybe a therapist who doesn't feel like autism is out of her range of expertise might be better for him, since he does have the history of language delay. Just because someone has training in psychopathology, like anxiety, doesn't mean that they've had any training in developmental issues.

Of course, one reason to consider an ADOS down the road might be to help get school services, but you may be able to do that with your neuropsych. Or if the neuropsychologist says that they really need an ADOS to have a complete picture, then it might be worthwhile to do it.

Also, I wanted to ask if you saw an increase in the behavior problems at home after his IEP was pulled. I am not sure what services he was getting before but where I live it is not uncommon for kids to be exited from services "because they are doing so well" without any thought given to the fact that it is the supports and services that are enabling them to do so well. It is also not uncommon for kids who are struggling in school to keep it together all day but then go home and lose their sh*t. If there really is no rhyme or reason to your son's behavior at home it might be related to anxiety/stress from school.

Thank you! Yes I think the psych's concern is that if he is on spectrum and has communication deficits/rigid tendencies, she might not be very effective.

Regarding IEP, he had behavior outbursts since he was a child, and always only at home. It is less frequency, and it is just that being a tween now he has more intensity. But yes definitely some of these are school triggers, like a kid bullying him or teasing him. The school does take action when they see such behaviors, and the 504 with written support to pull our during fire drills make him calmer. In fact his previous FCPS school was just holding his IEP with emotional disability for last 1-2 years to give him fire drill support, though there was no educational or any underlying emotional need atleast at school.

Majority of his random outbursts are due to defiance and lack of emotional regulation on disappointments.