Neurospych Testing Recs- Who did you use and did you love them?

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:How about Kennedy Krieger?

Haven't used her but Dr. Alison Mostow at KKI was recommended to us.

She is a clinical psychologist, not Neurodevelopmental one. We had a 3 hr evaluation with her for a child of 5 and she explained the difference between her eval and full neuropsych. I found the results of testing informative and she was very attentive, but the report disappointed me a bit. It was basically a very careful record of everything we said at parents' intake, some stuff from other specialist reports we submitted and then test results. In terms of recommendations she endorsed everything we were already doing (truth be told, we are doing a lot), so I didn't come away with a sense of fine-tuned direction or understanding what we should do more of or less of.

An important note for those who need to lean on heavily on neuropsych results in IEP process - the KKI recommendations were phrased as "may benefit from", we asked to revise to a more persuasive language and got "xyz is recommended". This may depend on individual child's profile, but nothing in the report said "required" which is strange to me. My child is broadly at age expectation academically for K, but has AuDHD, dev. delay, general emotional immaturity and elevated anxiety scores. So with this report if we were doing K at public school, getting any service minutes would not be a given with this type of report. We did have a good parent feedback session and discussed all questions that we raised.

I have no issues with test results and am glad I was able to get my child tested by a reputable specialist at a place that takes our insurance, but I felt like for the next neuropsych whenever it happens to be, I will go with a different practice, privately. Also, KKI doesn't do 2 versions of report like some private practices do.

Does anybody do a "full neuropsych" for 5 year olds? My understanding is some of the tests used in neuropsychs are not validated for that age.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:How about Kennedy Krieger?

Haven't used her but Dr. Alison Mostow at KKI was recommended to us.

She is a clinical psychologist, not Neurodevelopmental one. We had a 3 hr evaluation with her for a child of 5 and she explained the difference between her eval and full neuropsych. I found the results of testing informative and she was very attentive, but the report disappointed me a bit. It was basically a very careful record of everything we said at parents' intake, some stuff from other specialist reports we submitted and then test results. In terms of recommendations she endorsed everything we were already doing (truth be told, we are doing a lot), so I didn't come away with a sense of fine-tuned direction or understanding what we should do more of or less of.

An important note for those who need to lean on heavily on neuropsych results in IEP process - the KKI recommendations were phrased as "may benefit from", we asked to revise to a more persuasive language and got "xyz is recommended". This may depend on individual child's profile, but nothing in the report said "required" which is strange to me. My child is broadly at age expectation academically for K, but has AuDHD, dev. delay, general emotional immaturity and elevated anxiety scores. So with this report if we were doing K at public school, getting any service minutes would not be a given with this type of report. We did have a good parent feedback session and discussed all questions that we raised.

I have no issues with test results and am glad I was able to get my child tested by a reputable specialist at a place that takes our insurance, but I felt like for the next neuropsych whenever it happens to be, I will go with a different practice, privately. Also, KKI doesn't do 2 versions of report like some private practices do.

I think you are expecting to much. Evaluations and “neuropsychs” give you objective results based on normed instruments. Specific details and projections about what your particular kid needs are not really able to be discerned except on a general level for what the practitioner recommends for other kids with similar profiles. You need to work with therapists and schools to figure out what is really going to work for your child in practice.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:How about Kennedy Krieger?

Haven't used her but Dr. Alison Mostow at KKI was recommended to us.

She is a clinical psychologist, not Neurodevelopmental one. We had a 3 hr evaluation with her for a child of 5 and she explained the difference between her eval and full neuropsych. I found the results of testing informative and she was very attentive, but the report disappointed me a bit. It was basically a very careful record of everything we said at parents' intake, some stuff from other specialist reports we submitted and then test results. In terms of recommendations she endorsed everything we were already doing (truth be told, we are doing a lot), so I didn't come away with a sense of fine-tuned direction or understanding what we should do more of or less of.

An important note for those who need to lean on heavily on neuropsych results in IEP process - the KKI recommendations were phrased as "may benefit from", we asked to revise to a more persuasive language and got "xyz is recommended". This may depend on individual child's profile, but nothing in the report said "required" which is strange to me. My child is broadly at age expectation academically for K, but has AuDHD, dev. delay, general emotional immaturity and elevated anxiety scores. So with this report if we were doing K at public school, getting any service minutes would not be a given with this type of report. We did have a good parent feedback session and discussed all questions that we raised.

I have no issues with test results and am glad I was able to get my child tested by a reputable specialist at a place that takes our insurance, but I felt like for the next neuropsych whenever it happens to be, I will go with a different practice, privately. Also, KKI doesn't do 2 versions of report like some private practices do.

“may benefit from” is more professionally accurate than “requires.”

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Our school did a good one. Otherwise, anyone who takes your insurance. They are standardized, normed tests.

I strongly disagree, unless you get a rec for someone good who takes your insurance. This is the kind of thing where you want to feel like you've left no stone unturned, and fund it accordingly, even if it means being in some debt. This diagnosis will determine what kind of accommodations your child gets for the next several years as well as what medications, if any, a doctor will recommend. I would go with someone random to take out my child's tonsils, but not for this.

We worked with Dr. Elliott Blumenstein in Silver Spring. He was a total delight--easy to be with, open to questions, my son loved him, and he really opened our eyes. I can't say enough good things about him.

Most kids don’t need to leave “no stone unturned” because the issues just are not that complex. FWIW we got very similar results between Childrens, KKI and the school - these are normed instruments after all. And the diagnosis does NOT determine the accommodations! That’s totally backwards. Most people don’t have reams of $$ and in most cases are better served to save their money for therapies/tutoring. With the exception perhaps of learning disorders, developmental conditions severe enough to need testing are obvious and do not need to be “teased out.” If they are that “subtle” then the therapy approach is probably going to be pretty general.

tl;dr - developmental issues are not hidden and if they are, they are not actually developmental issues.

I find this take a little bizarre. What is a "general therapy approach"? That sounds like a money pit. Do you think kids with lower support needs don't deserve supports specific to their challenges? Or do you just think our kids are over diagnosed? Tell that to the many people whose teenage girls get a late diagnosis of autism when they are already experiencing severe mental health challenges due to the lack of supports that boys with similar issues are able to get much earlier.

It matters if social challenges are caused by anxiety or if the root is autism, and it's not that easy to tell especially since anxiety typically comes along with autism. We as parents absolutely needed that teased out in order to continue our child's supports after she had showed significant improvement.

I actually don’t think it matters all that much if social issues are caused by anxiety vs autism. If there were an autism pill I might feel differently but there is not. And yes a skilled therapist can figure out what works and what doesn’t.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Our school did a good one. Otherwise, anyone who takes your insurance. They are standardized, normed tests.

I strongly disagree, unless you get a rec for someone good who takes your insurance. This is the kind of thing where you want to feel like you've left no stone unturned, and fund it accordingly, even if it means being in some debt. This diagnosis will determine what kind of accommodations your child gets for the next several years as well as what medications, if any, a doctor will recommend. I would go with someone random to take out my child's tonsils, but not for this.

We worked with Dr. Elliott Blumenstein in Silver Spring. He was a total delight--easy to be with, open to questions, my son loved him, and he really opened our eyes. I can't say enough good things about him.

Most kids don’t need to leave “no stone unturned” because the issues just are not that complex. FWIW we got very similar results between Childrens, KKI and the school - these are normed instruments after all. And the diagnosis does NOT determine the accommodations! That’s totally backwards. Most people don’t have reams of $$ and in most cases are better served to save their money for therapies/tutoring. With the exception perhaps of learning disorders, developmental conditions severe enough to need testing are obvious and do not need to be “teased out.” If they are that “subtle” then the therapy approach is probably going to be pretty general.

tl;dr - developmental issues are not hidden and if they are, they are not actually developmental issues.

I find this take a little bizarre. What is a "general therapy approach"? That sounds like a money pit. Do you think kids with lower support needs don't deserve supports specific to their challenges? Or do you just think our kids are over diagnosed? Tell that to the many people whose teenage girls get a late diagnosis of autism when they are already experiencing severe mental health challenges due to the lack of supports that boys with similar issues are able to get much earlier.

It matters if social challenges are caused by anxiety or if the root is autism, and it's not that easy to tell especially since anxiety typically comes along with autism. We as parents absolutely needed that teased out in order to continue our child's supports after she had showed significant improvement.

I actually don't think there is any perceptible difference between social challenges in young children caused by anxiety vs autism.

I also don't think girls diagnosed in adolescence with autism have a neurodevelopmental condition that has much in common with that seen in three year old boys diagnosed with autism. I think there are a lot of different disabilities we have chosen to call autism, for some reason.

Almost all the little boys I know who were diagnosed with autism in toddlerhood and preschool have significant mental health issues as teens, so the supports they got throughout childhood didn't seem to prevent that aspect of autism. Unfortunately.

I am not saying everyone doesn't deserve support.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Our school did a good one. Otherwise, anyone who takes your insurance. They are standardized, normed tests.

I strongly disagree, unless you get a rec for someone good who takes your insurance. This is the kind of thing where you want to feel like you've left no stone unturned, and fund it accordingly, even if it means being in some debt. This diagnosis will determine what kind of accommodations your child gets for the next several years as well as what medications, if any, a doctor will recommend. I would go with someone random to take out my child's tonsils, but not for this.

We worked with Dr. Elliott Blumenstein in Silver Spring. He was a total delight--easy to be with, open to questions, my son loved him, and he really opened our eyes. I can't say enough good things about him.

Most kids don’t need to leave “no stone unturned” because the issues just are not that complex. FWIW we got very similar results between Childrens, KKI and the school - these are normed instruments after all. And the diagnosis does NOT determine the accommodations! That’s totally backwards. Most people don’t have reams of $$ and in most cases are better served to save their money for therapies/tutoring. With the exception perhaps of learning disorders, developmental conditions severe enough to need testing are obvious and do not need to be “teased out.” If they are that “subtle” then the therapy approach is probably going to be pretty general.

tl;dr - developmental issues are not hidden and if they are, they are not actually developmental issues.

I find this take a little bizarre. What is a "general therapy approach"? That sounds like a money pit. Do you think kids with lower support needs don't deserve supports specific to their challenges? Or do you just think our kids are over diagnosed? Tell that to the many people whose teenage girls get a late diagnosis of autism when they are already experiencing severe mental health challenges due to the lack of supports that boys with similar issues are able to get much earlier.

It matters if social challenges are caused by anxiety or if the root is autism, and it's not that easy to tell especially since anxiety typically comes along with autism. We as parents absolutely needed that teased out in order to continue our child's supports after she had showed significant improvement.

I actually don't think there is any perceptible difference between social challenges in young children caused by anxiety vs autism.

I also don't think girls diagnosed in adolescence with autism have a neurodevelopmental condition that has much in common with that seen in three year old boys diagnosed with autism. I think there are a lot of different disabilities we have chosen to call autism, for some reason.

Almost all the little boys I know who were diagnosed with autism in toddlerhood and preschool have significant mental health issues as teens, so the supports they got throughout childhood didn't seem to prevent that aspect of autism. Unfortunately.

I am not saying everyone doesn't deserve support.

Experts in the field would strongly disagree with you on most of what you said. A kid with anxiety but not autism will perform differently on the ADOS than a kid with autism even if the kid with autism doesn't conform with your stereotypes about autistic kids. This is not an unstudied topic. You are not an authority on this so stop pontificating on the diagnoses of kids you've never met.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Our school did a good one. Otherwise, anyone who takes your insurance. They are standardized, normed tests.

I strongly disagree, unless you get a rec for someone good who takes your insurance. This is the kind of thing where you want to feel like you've left no stone unturned, and fund it accordingly, even if it means being in some debt. This diagnosis will determine what kind of accommodations your child gets for the next several years as well as what medications, if any, a doctor will recommend. I would go with someone random to take out my child's tonsils, but not for this.

We worked with Dr. Elliott Blumenstein in Silver Spring. He was a total delight--easy to be with, open to questions, my son loved him, and he really opened our eyes. I can't say enough good things about him.

Most kids don’t need to leave “no stone unturned” because the issues just are not that complex. FWIW we got very similar results between Childrens, KKI and the school - these are normed instruments after all. And the diagnosis does NOT determine the accommodations! That’s totally backwards. Most people don’t have reams of $$ and in most cases are better served to save their money for therapies/tutoring. With the exception perhaps of learning disorders, developmental conditions severe enough to need testing are obvious and do not need to be “teased out.” If they are that “subtle” then the therapy approach is probably going to be pretty general.

tl;dr - developmental issues are not hidden and if they are, they are not actually developmental issues.

I find this take a little bizarre. What is a "general therapy approach"? That sounds like a money pit. Do you think kids with lower support needs don't deserve supports specific to their challenges? Or do you just think our kids are over diagnosed? Tell that to the many people whose teenage girls get a late diagnosis of autism when they are already experiencing severe mental health challenges due to the lack of supports that boys with similar issues are able to get much earlier.

It matters if social challenges are caused by anxiety or if the root is autism, and it's not that easy to tell especially since anxiety typically comes along with autism. We as parents absolutely needed that teased out in order to continue our child's supports after she had showed significant improvement.

I actually don't think there is any perceptible difference between social challenges in young children caused by anxiety vs autism.

I also don't think girls diagnosed in adolescence with autism have a neurodevelopmental condition that has much in common with that seen in three year old boys diagnosed with autism. I think there are a lot of different disabilities we have chosen to call autism, for some reason.

Almost all the little boys I know who were diagnosed with autism in toddlerhood and preschool have significant mental health issues as teens, so the supports they got throughout childhood didn't seem to prevent that aspect of autism. Unfortunately.

I am not saying everyone doesn't deserve support.

Experts in the field would strongly disagree with you on most of what you said. A kid with anxiety but not autism will perform differently on the ADOS than a kid with autism even if the kid with autism doesn't conform with your stereotypes about autistic kids. This is not an unstudied topic. You are not an authority on this so stop pontificating on the diagnoses of kids you've never met.

My own kid had alternating anxiety vs autism diagnoses. It seemed not so clear to the evaluators.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Our school did a good one. Otherwise, anyone who takes your insurance. They are standardized, normed tests.

I strongly disagree, unless you get a rec for someone good who takes your insurance. This is the kind of thing where you want to feel like you've left no stone unturned, and fund it accordingly, even if it means being in some debt. This diagnosis will determine what kind of accommodations your child gets for the next several years as well as what medications, if any, a doctor will recommend. I would go with someone random to take out my child's tonsils, but not for this.

We worked with Dr. Elliott Blumenstein in Silver Spring. He was a total delight--easy to be with, open to questions, my son loved him, and he really opened our eyes. I can't say enough good things about him.

Most kids don’t need to leave “no stone unturned” because the issues just are not that complex. FWIW we got very similar results between Childrens, KKI and the school - these are normed instruments after all. And the diagnosis does NOT determine the accommodations! That’s totally backwards. Most people don’t have reams of $$ and in most cases are better served to save their money for therapies/tutoring. With the exception perhaps of learning disorders, developmental conditions severe enough to need testing are obvious and do not need to be “teased out.” If they are that “subtle” then the therapy approach is probably going to be pretty general.

tl;dr - developmental issues are not hidden and if they are, they are not actually developmental issues.

I find this take a little bizarre. What is a "general therapy approach"? That sounds like a money pit. Do you think kids with lower support needs don't deserve supports specific to their challenges? Or do you just think our kids are over diagnosed? Tell that to the many people whose teenage girls get a late diagnosis of autism when they are already experiencing severe mental health challenges due to the lack of supports that boys with similar issues are able to get much earlier.

It matters if social challenges are caused by anxiety or if the root is autism, and it's not that easy to tell especially since anxiety typically comes along with autism. We as parents absolutely needed that teased out in order to continue our child's supports after she had showed significant improvement.

I actually don't think there is any perceptible difference between social challenges in young children caused by anxiety vs autism.

I also don't think girls diagnosed in adolescence with autism have a neurodevelopmental condition that has much in common with that seen in three year old boys diagnosed with autism. I think there are a lot of different disabilities we have chosen to call autism, for some reason.

Almost all the little boys I know who were diagnosed with autism in toddlerhood and preschool have significant mental health issues as teens, so the supports they got throughout childhood didn't seem to prevent that aspect of autism. Unfortunately.

I am not saying everyone doesn't deserve support.

Experts in the field would strongly disagree with you on most of what you said. A kid with anxiety but not autism will perform differently on the ADOS than a kid with autism even if the kid with autism doesn't conform with your stereotypes about autistic kids. This is not an unstudied topic. You are not an authority on this so stop pontificating on the diagnoses of kids you've never met.

My own kid had alternating anxiety vs autism diagnoses. It seemed not so clear to the evaluators.

Are you the PP? Why don't you describe your experience instead of trying to deny the real diagnoses of other people's children?

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:How about Kennedy Krieger?

Haven't used her but Dr. Alison Mostow at KKI was recommended to us.

.

“may benefit from” is more professionally accurate than “requires.”

I disagree. It's far more generic. A very big proportion of children "may benefit" from smaller classroom sizes and individualized instruction. But for children with certain profiles it may be the difference between staying on grade level or not, having meltdowns or not, ruined self esteem or not, school refusal down the line or not.

For "may benefit from" I can read a book on general topics about ASD children, listen to podcasts, chat on a forum like this one. Expecting clarity on what supports and settings your child needs is not outlandish. Providing this clarity is not unprofessional.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:How about Kennedy Krieger?

Haven't used her but Dr. Alison Mostow at KKI was recommended to us.

She is a clinical psychologist, not Neurodevelopmental one. We had a 3 hr evaluation with her for a child of 5 and she explained the difference between her eval and full neuropsych. I found the results of testing informative and she was very attentive, but the report disappointed me a bit. It was basically a very careful record of everything we said at parents' intake, some stuff from other specialist reports we submitted and then test results. In terms of recommendations she endorsed everything we were already doing (truth be told, we are doing a lot), so I didn't come away with a sense of fine-tuned direction or understanding what we should do more of or less of.

An important note for those who need to lean on heavily on neuropsych results in IEP process - the KKI recommendations were phrased as "may benefit from", we asked to revise to a more persuasive language and got "xyz is recommended". This may depend on individual child's profile, but nothing in the report said "required" which is strange to me. My child is broadly at age expectation academically for K, but has AuDHD, dev. delay, general emotional immaturity and elevated anxiety scores. So with this report if we were doing K at public school, getting any service minutes would not be a given with this type of report. We did have a good parent feedback session and discussed all questions that we raised.

I have no issues with test results and am glad I was able to get my child tested by a reputable specialist at a place that takes our insurance, but I felt like for the next neuropsych whenever it happens to be, I will go with a different practice, privately. Also, KKI doesn't do 2 versions of report like some private practices do.

I think you are expecting to much. Evaluations and “neuropsychs” give you objective results based on normed instruments. Specific details and projections about what your particular kid needs are not really able to be discerned except on a general level for what the practitioner recommends for other kids with similar profiles. You need to work with therapists and schools to figure out what is really going to work for your child in practice.

I've been struggling with this conceptually over the years. Coordination of care. SLP can assess language, OT - her domain, ABA - behaviors. Who is supposed to look at the child wholistically and pin point issues that are not squarely in one of these? If there is limited time or resources, who can tell you how to prioritize or sequence interventions? Who is supposed to tell the family what tier 1 problems/goals are and which ones are tier 2 or 3? I was told that this is dev. ped. OK, we have a very nice one at Childrens but we see her every 8 months or so for 1 hr. Is she supposed to read reams of reports from other therapists to fully wrap her head around my child's profile and give this guidance to the family? It's not happening. She answers questions, confirms that we're generally on track, can recommend providers if we can't find a good one in a specific area, but doesn't tell me what to do in the next 12-18-24 months to support progress. I love all of our providers, but they are in private practice, nobody is going to say you can drop me to once in 2 weeks and ramp up hours with provider X in another domain. I am an educated professional who is committed to help my child, but I am a lay person in special needs domain, how am I supposed to figure it out? Neuropsych costs several thousand dollars and I "expect too much" because they are only accountable for reporting standartized test results for this money? Come on.

[Anonymous]

Anonymous wrote:How about Kennedy Krieger?

They do a good enough job. The report was thorough. Testing done all in one day. Covered by insurance.

We used someone at Resnicks who no longer works there and we hated her. And yes hate is a strong word.

[Anonymous]

Anonymous wrote:

Anonymous wrote:We used Stixrud twice over the years. Cookie cutter reports. In one, the wrong kid's name was not edited out. The provider also landed on the easy diagnoses (ADHD) and didn't even bother with an ADOS, despite autism concerns from parents and a mental health provider.

Not even six months after the last Stixrud testing, DC was inpatient for major anxiety and an autistic mentdown. That's how DC got the very late ASD diagnosis.

Everyone who has since read the Stixrud report said signs of ASD were all over it, and Stixrud missed it.

We wasted thousands and thousands of dollars on their help.

Yeah I've listened to some of the podcasts featuring Dr. Henderson talking about autism in girls and she acknowledges she "didn't do autism" before she had an epiphany about particular patient she was evaluating. I was definitely told to go to either Dr. Henderson or Dr. Namazi at Stixrud (we ended up using a different practice due to the long wait-list for these).

It's bizarre to me that any person conducting neuropsychological assessments would "not do autism". It kind of feels like it's on the parent to figure out the diagnosis and then select an evaluator who can diagnose the condition you think your child has.

Namazi is great. Gets ASD in girls and women.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:How about Kennedy Krieger?

Haven't used her but Dr. Alison Mostow at KKI was recommended to us.

She is a clinical psychologist, not Neurodevelopmental one. We had a 3 hr evaluation with her for a child of 5 and she explained the difference between her eval and full neuropsych. I found the results of testing informative and she was very attentive, but the report disappointed me a bit. It was basically a very careful record of everything we said at parents' intake, some stuff from other specialist reports we submitted and then test results. In terms of recommendations she endorsed everything we were already doing (truth be told, we are doing a lot), so I didn't come away with a sense of fine-tuned direction or understanding what we should do more of or less of.

An important note for those who need to lean on heavily on neuropsych results in IEP process - the KKI recommendations were phrased as "may benefit from", we asked to revise to a more persuasive language and got "xyz is recommended". This may depend on individual child's profile, but nothing in the report said "required" which is strange to me. My child is broadly at age expectation academically for K, but has AuDHD, dev. delay, general emotional immaturity and elevated anxiety scores. So with this report if we were doing K at public school, getting any service minutes would not be a given with this type of report. We did have a good parent feedback session and discussed all questions that we raised.

I have no issues with test results and am glad I was able to get my child tested by a reputable specialist at a place that takes our insurance, but I felt like for the next neuropsych whenever it happens to be, I will go with a different practice, privately. Also, KKI doesn't do 2 versions of report like some private practices do.

I think you are expecting to much. Evaluations and “neuropsychs” give you objective results based on normed instruments. Specific details and projections about what your particular kid needs are not really able to be discerned except on a general level for what the practitioner recommends for other kids with similar profiles. You need to work with therapists and schools to figure out what is really going to work for your child in practice.

I've been struggling with this conceptually over the years. Coordination of care. SLP can assess language, OT - her domain, ABA - behaviors. Who is supposed to look at the child wholistically and pin point issues that are not squarely in one of these? If there is limited time or resources, who can tell you how to prioritize or sequence interventions? Who is supposed to tell the family what tier 1 problems/goals are and which ones are tier 2 or 3? I was told that this is dev. ped. OK, we have a very nice one at Childrens but we see her every 8 months or so for 1 hr. Is she supposed to read reams of reports from other therapists to fully wrap her head around my child's profile and give this guidance to the family? It's not happening. She answers questions, confirms that we're generally on track, can recommend providers if we can't find a good one in a specific area, but doesn't tell me what to do in the next 12-18-24 months to support progress. I love all of our providers, but they are in private practice, nobody is going to say you can drop me to once in 2 weeks and ramp up hours with provider X in another domain. I am an educated professional who is committed to help my child, but I am a lay person in special needs domain, how am I supposed to figure it out? Neuropsych costs several thousand dollars and I "expect too much" because they are only accountable for reporting standartized test results for this money? Come on.

I think nobody knows what you should do, is the honest truth. I have a teen, have spent tens of thousands of dollars on neuropsychs, psychiatrists, therapists, psychologists, medical workups. I feel like all our most useful interventions are ideas we thought of (my and my spouse). We get compassionate support and/or prescriptions from the specialists, many of whom my child has a warm longtime relationship with, and occasionally a nugget of interesting info. But very little guidance, and less and less as our child gets older.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:How about Kennedy Krieger?

Haven't used her but Dr. Alison Mostow at KKI was recommended to us.

She is a clinical psychologist, not Neurodevelopmental one. We had a 3 hr evaluation with her for a child of 5 and she explained the difference between her eval and full neuropsych. I found the results of testing informative and she was very attentive, but the report disappointed me a bit. It was basically a very careful record of everything we said at parents' intake, some stuff from other specialist reports we submitted and then test results. In terms of recommendations she endorsed everything we were already doing (truth be told, we are doing a lot), so I didn't come away with a sense of fine-tuned direction or understanding what we should do more of or less of.

An important note for those who need to lean on heavily on neuropsych results in IEP process - the KKI recommendations were phrased as "may benefit from", we asked to revise to a more persuasive language and got "xyz is recommended". This may depend on individual child's profile, but nothing in the report said "required" which is strange to me. My child is broadly at age expectation academically for K, but has AuDHD, dev. delay, general emotional immaturity and elevated anxiety scores. So with this report if we were doing K at public school, getting any service minutes would not be a given with this type of report. We did have a good parent feedback session and discussed all questions that we raised.

I have no issues with test results and am glad I was able to get my child tested by a reputable specialist at a place that takes our insurance, but I felt like for the next neuropsych whenever it happens to be, I will go with a different practice, privately. Also, KKI doesn't do 2 versions of report like some private practices do.

I think you are expecting to much. Evaluations and “neuropsychs” give you objective results based on normed instruments. Specific details and projections about what your particular kid needs are not really able to be discerned except on a general level for what the practitioner recommends for other kids with similar profiles. You need to work with therapists and schools to figure out what is really going to work for your child in practice.

I've been struggling with this conceptually over the years. Coordination of care. SLP can assess language, OT - her domain, ABA - behaviors. Who is supposed to look at the child wholistically and pin point issues that are not squarely in one of these? If there is limited time or resources, who can tell you how to prioritize or sequence interventions? Who is supposed to tell the family what tier 1 problems/goals are and which ones are tier 2 or 3? I was told that this is dev. ped. OK, we have a very nice one at Childrens but we see her every 8 months or so for 1 hr. Is she supposed to read reams of reports from other therapists to fully wrap her head around my child's profile and give this guidance to the family? It's not happening. She answers questions, confirms that we're generally on track, can recommend providers if we can't find a good one in a specific area, but doesn't tell me what to do in the next 12-18-24 months to support progress. I love all of our providers, but they are in private practice, nobody is going to say you can drop me to once in 2 weeks and ramp up hours with provider X in another domain. I am an educated professional who is committed to help my child, but I am a lay person in special needs domain, how am I supposed to figure it out? Neuropsych costs several thousand dollars and I "expect too much" because they are only accountable for reporting standartized test results for this money? Come on.

Ftr we have had two different private providers tell us our DD had progressed to the point they could not help further and referred us to other private providers.

[Anonymous]

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Anonymous wrote:Our school did a good one. Otherwise, anyone who takes your insurance. They are standardized, normed tests.

I strongly disagree, unless you get a rec for someone good who takes your insurance. This is the kind of thing where you want to feel like you've left no stone unturned, and fund it accordingly, even if it means being in some debt. This diagnosis will determine what kind of accommodations your child gets for the next several years as well as what medications, if any, a doctor will recommend. I would go with someone random to take out my child's tonsils, but not for this.

We worked with Dr. Elliott Blumenstein in Silver Spring. He was a total delight--easy to be with, open to questions, my son loved him, and he really opened our eyes. I can't say enough good things about him.

Most kids don’t need to leave “no stone unturned” because the issues just are not that complex. FWIW we got very similar results between Childrens, KKI and the school - these are normed instruments after all. And the diagnosis does NOT determine the accommodations! That’s totally backwards. Most people don’t have reams of $$ and in most cases are better served to save their money for therapies/tutoring. With the exception perhaps of learning disorders, developmental conditions severe enough to need testing are obvious and do not need to be “teased out.” If they are that “subtle” then the therapy approach is probably going to be pretty general.

tl;dr - developmental issues are not hidden and if they are, they are not actually developmental issues.

I find this take a little bizarre. What is a "general therapy approach"? That sounds like a money pit. Do you think kids with lower support needs don't deserve supports specific to their challenges? Or do you just think our kids are over diagnosed? Tell that to the many people whose teenage girls get a late diagnosis of autism when they are already experiencing severe mental health challenges due to the lack of supports that boys with similar issues are able to get much earlier.

It matters if social challenges are caused by anxiety or if the root is autism, and it's not that easy to tell especially since anxiety typically comes along with autism. We as parents absolutely needed that teased out in order to continue our child's supports after she had showed significant improvement.

I actually don't think there is any perceptible difference between social challenges in young children caused by anxiety vs autism.

I also don't think girls diagnosed in adolescence with autism have a neurodevelopmental condition that has much in common with that seen in three year old boys diagnosed with autism. I think there are a lot of different disabilities we have chosen to call autism, for some reason.

Almost all the little boys I know who were diagnosed with autism in toddlerhood and preschool have significant mental health issues as teens, so the supports they got throughout childhood didn't seem to prevent that aspect of autism. Unfortunately.

I am not saying everyone doesn't deserve support.

Experts in the field would strongly disagree with you on most of what you said. A kid with anxiety but not autism will perform differently on the ADOS than a kid with autism even if the kid with autism doesn't conform with your stereotypes about autistic kids. This is not an unstudied topic. You are not an authority on this so stop pontificating on the diagnoses of kids you've never met.

DP. Right so this whole thing of needing to shell out $7k to get an expert to “tease out” autism v anxiety is uneccesary. You can to to KKI or Childrens and have someone with the exact same training administer the exadt same normed test; but covered by insurance. Then you can take your $7k and spend it on something like an enriching SN camp or tutors instead.