Anonymous
04/08/2021 21:34
Subject: Re:Kennedy Krieger Autism evaluation? Take it or get a second opinion?
My daughter is also adopted and had several diagnosis over the years (including from KK) that only partially explained what is going on with her.
We finally found Dr. Rebecca Resnik in Bethesda who was AMAZING. She did an in-depth eval with multiple tests based on our concerns and questions. It turns out that my daughter has ADS plus other diagnosis, which makes a lot of sense. Dr. Resnik explained in detail how she reached that diagnosis and the other things that she found.
We got extensive recommendations for support for school and home. We finally feel like we have a complete picture (we were always told that she was not a "complex case"), and have confidence
in the next steps forward. I highly recommend Dr. Resnik if you have any doubt or need a second opinion.
We finally found Dr. Rebecca Resnik in Bethesda who was AMAZING. She did an in-depth eval with multiple tests based on our concerns and questions. It turns out that my daughter has ADS plus other diagnosis, which makes a lot of sense. Dr. Resnik explained in detail how she reached that diagnosis and the other things that she found.
We got extensive recommendations for support for school and home. We finally feel like we have a complete picture (we were always told that she was not a "complex case"), and have confidence
in the next steps forward. I highly recommend Dr. Resnik if you have any doubt or need a second opinion.
Anonymous
04/08/2021 14:59
Subject: Re:Kennedy Krieger Autism evaluation? Take it or get a second opinion?
Try to get in with a KKI developmental ped. Some of them also work at CARD, and they will be able to talk further through the diagnosis and CARD report with you. It is a lot to process. KKI has so many resources that it might be worth at least being on a waiting list for additional services and support from them.
Anonymous
04/08/2021 14:54
Subject: Kennedy Krieger Autism evaluation? Take it or get a second opinion?
Anonymous wrote:Anonymous wrote:Anonymous wrote:I am a little confused. It sounds like your child has pervasive delays and needs and needs support. What supports did they recommend? Are you asking if someone else would conclude that she was not autistic? And if so, why? Do you not think she is?
I think she's asking what else might be going on in addition to ASD, which sounds like could be important for targeting therapies.
Yes, this is what I was trying to ask. The Autism diagnosis isn't all that surprising. We have just had different specialists and this in the adoption world express different ideas about if this is serveral things that overlap Autism or several things that are presenting like Autism. It only matter to me in that we approach both treatments from the right prospective and acceptance of some things just might always be different no matter the treatment.
You sort of threw the adoption piece in there without any details, but if the child was adopted, it might be worth talking to the KKI International Adoption Clinic, not as a second opinion per se, but in conjunction with the autism diagnosis.
https://www.kennedykrieger.org/patient-care/centers-and-programs/international-adoption-clinic
Anonymous
04/08/2021 14:53
Subject: Re:Kennedy Krieger Autism evaluation? Take it or get a second opinion?
Anonymous wrote:KKI does excellent work. I’m not clear what you would like to accomplish with a second opinion. At this point, in your place, I would formulate questions and concerns that you still have, and go back to KKI for a follow-up reporting session.
You might even want to ask what the thought process was in making rule-out diagnoses and recommendations, and if any further assessments would be clarifying in terms of recommendations and/or diagnostic issues.
IMO, you haven’t thoroughly made the most of THIS assessment yet. I would urge you to utilize KKI resources more fully before going on to another — potentially stressful assessment. If you do decide on additional assessment, give some thought to how you plan to reconcile any differences between the two evaluating. There will likely be differences since some assessment tools should not be used multiple times within a specific time range, and your child might handle a second round of testing in different ways in light of the first round.
tldr: Plan a follow-up meeting with KKI to discuss your questions and concerns.
Thank you this is very helpful. It all feels a little overwhelming and some family members (with no professional or personal related experience) are very against the diagnosis and pushing for a different opinion.
What you are saying makes more sense to me and it is good to know it isn't unusual to ask for more clarity regarding this or other diagnosis. Thank you.
Anonymous
04/08/2021 14:50
Subject: Kennedy Krieger Autism evaluation? Take it or get a second opinion?
Anonymous wrote:Anonymous wrote:So, we have been bouncing around to different specialists for a couple years. We have what we feel is a fairly good primary at CNH and have also seen GPs at the Columbia campus when we could get into the main/primary complex care GP. Our child also has a Peds Developmental specialist at CNHs since 4. She felt the DD might be on the Autism, or have a combination of ADHD, Anxiety. But, our DD is a complex case with learning delays and early childhood neglect/trauma (pre-adoption& adoption related) and a couple minor but on going medical conditions.
Our child had PT/OT, Speech at CNHs during the 3-5 year old range. In K we decide the school services were working fairly well but kept on wait list for OT (after a summer break) and behavior evaluations.
With most of the behaviors/concerns being on the cusp and the complex both the GP & Developmental Peds wanted to wait on a Autism evaluation. But once settled for a few years, the age of 6/7 and things were still presenting they thought we should move forward. Hence. the referral for an ADOS at Kennedy Krieger (CNH didn't take our insurance).
Both speech & the Developmental doctor said DD presented with Autism.
I have more follow up questions for them that I couldn't organize in my brain at the time of the evaluation. Idk, as it wasn't a complete shock or anything. But, with a complex history would you get a second opinion??
I mean this is KK Cards expertise right?? Is anyone really going to disagree with them? Other than how we approach support services in or outside of school and insurance coverage it doesn't really change anything.
I don't know how the label impacts kids in the system but prior to this no I felt we just kept getting bounced around because we didn't have a diagnosis. Can Anxiety & OCD & learning delays mimick Autism.. would some where like KK miss that ( we to mention it during the evaluation).
Did you get a second opinion?
Did they evaluate for anything other than autism? If not, you could get someone else to evaluate for the other concerns you have but I would accept the autism diagnosis. There have been several threads recently for advocates - here is one of them: https://www.dcurbanmom.com/jforum/posts/list/946247.page
They did not test for anything other than Autism at this session. A 🆕 over of referrals were made such as sleep study, behavior therapy & ABA, social skills.
Anonymous
04/08/2021 14:48
Subject: Kennedy Krieger Autism evaluation? Take it or get a second opinion?
Anonymous wrote:Anonymous wrote:I am a little confused. It sounds like your child has pervasive delays and needs and needs support. What supports did they recommend? Are you asking if someone else would conclude that she was not autistic? And if so, why? Do you not think she is?
I think she's asking what else might be going on in addition to ASD, which sounds like could be important for targeting therapies.
Yes, this is what I was trying to ask. The Autism diagnosis isn't all that surprising. We have just had different specialists and this in the adoption world express different ideas about if this is serveral things that overlap Autism or several things that are presenting like Autism. It only matter to me in that we approach both treatments from the right prospective and acceptance of some things just might always be different no matter the treatment.
Anonymous
04/08/2021 12:14
Subject: Re:Kennedy Krieger Autism evaluation? Take it or get a second opinion?
KKI does excellent work. I’m not clear what you would like to accomplish with a second opinion. At this point, in your place, I would formulate questions and concerns that you still have, and go back to KKI for a follow-up reporting session.
You might even want to ask what the thought process was in making rule-out diagnoses and recommendations, and if any further assessments would be clarifying in terms of recommendations and/or diagnostic issues.
IMO, you haven’t thoroughly made the most of THIS assessment yet. I would urge you to utilize KKI resources more fully before going on to another — potentially stressful assessment. If you do decide on additional assessment, give some thought to how you plan to reconcile any differences between the two evaluating. There will likely be differences since some assessment tools should not be used multiple times within a specific time range, and your child might handle a second round of testing in different ways in light of the first round.
tldr: Plan a follow-up meeting with KKI to discuss your questions and concerns.
You might even want to ask what the thought process was in making rule-out diagnoses and recommendations, and if any further assessments would be clarifying in terms of recommendations and/or diagnostic issues.
IMO, you haven’t thoroughly made the most of THIS assessment yet. I would urge you to utilize KKI resources more fully before going on to another — potentially stressful assessment. If you do decide on additional assessment, give some thought to how you plan to reconcile any differences between the two evaluating. There will likely be differences since some assessment tools should not be used multiple times within a specific time range, and your child might handle a second round of testing in different ways in light of the first round.
tldr: Plan a follow-up meeting with KKI to discuss your questions and concerns.
Anonymous
04/08/2021 12:05
Subject: Kennedy Krieger Autism evaluation? Take it or get a second opinion?
Anonymous wrote:So, we have been bouncing around to different specialists for a couple years. We have what we feel is a fairly good primary at CNH and have also seen GPs at the Columbia campus when we could get into the main/primary complex care GP. Our child also has a Peds Developmental specialist at CNHs since 4. She felt the DD might be on the Autism, or have a combination of ADHD, Anxiety. But, our DD is a complex case with learning delays and early childhood neglect/trauma (pre-adoption& adoption related) and a couple minor but on going medical conditions.
Our child had PT/OT, Speech at CNHs during the 3-5 year old range. In K we decide the school services were working fairly well but kept on wait list for OT (after a summer break) and behavior evaluations.
With most of the behaviors/concerns being on the cusp and the complex both the GP & Developmental Peds wanted to wait on a Autism evaluation. But once settled for a few years, the age of 6/7 and things were still presenting they thought we should move forward. Hence. the referral for an ADOS at Kennedy Krieger (CNH didn't take our insurance).
Both speech & the Developmental doctor said DD presented with Autism.
I have more follow up questions for them that I couldn't organize in my brain at the time of the evaluation. Idk, as it wasn't a complete shock or anything. But, with a complex history would you get a second opinion??
I mean this is KK Cards expertise right?? Is anyone really going to disagree with them? Other than how we approach support services in or outside of school and insurance coverage it doesn't really change anything.
I don't know how the label impacts kids in the system but prior to this no I felt we just kept getting bounced around because we didn't have a diagnosis. Can Anxiety & OCD & learning delays mimick Autism.. would some where like KK miss that ( we to mention it during the evaluation).
Did you get a second opinion?
Did they evaluate for anything other than autism? If not, you could get someone else to evaluate for the other concerns you have but I would accept the autism diagnosis. There have been several threads recently for advocates - here is one of them: https://www.dcurbanmom.com/jforum/posts/list/946247.page
Anonymous
04/08/2021 12:04
Subject: Re:Kennedy Krieger Autism evaluation? Take it or get a second opinion?
An ADOS would only look for autism. An autism diagnosis doesn't mean that she doesn't also have anxiety and OCD and learning disabilities.
Have you had a comprehensive evaluation? If you can afford to pay out of pocket, I strongly recommend David Black at CAAT.
Have you had a comprehensive evaluation? If you can afford to pay out of pocket, I strongly recommend David Black at CAAT.
Anonymous
04/08/2021 12:01
Subject: Kennedy Krieger Autism evaluation? Take it or get a second opinion?
Anonymous wrote:I am a little confused. It sounds like your child has pervasive delays and needs and needs support. What supports did they recommend? Are you asking if someone else would conclude that she was not autistic? And if so, why? Do you not think she is?
I think she's asking what else might be going on in addition to ASD, which sounds like could be important for targeting therapies.
Anonymous
04/08/2021 11:59
Subject: Kennedy Krieger Autism evaluation? Take it or get a second opinion?
This stuff is all overwhelming, so don't apologize!
We went to KKI for an autism evaluation for our 6 year old. It was relatively uncomplicated. The only evaluator was a psychologist. I feel like the evaluation was correct, but it honestly wasn't useful at all in terms of figuring out the next steps for support and school. But we already had an IEP that was working at that point, so I didn't really push it with KKI.
I understand that at KKI you can also get team-based evaluations where there might be more questions about what exactly is going on. It sounds like you should do some asking about that, instead of just the single pyschologist we had.
We went to KKI for an autism evaluation for our 6 year old. It was relatively uncomplicated. The only evaluator was a psychologist. I feel like the evaluation was correct, but it honestly wasn't useful at all in terms of figuring out the next steps for support and school. But we already had an IEP that was working at that point, so I didn't really push it with KKI.
I understand that at KKI you can also get team-based evaluations where there might be more questions about what exactly is going on. It sounds like you should do some asking about that, instead of just the single pyschologist we had.
Anonymous
04/08/2021 11:36
Subject: Kennedy Krieger Autism evaluation? Take it or get a second opinion?
And yes, an ADOS at KKI would be considered the gold standard, really.
Anonymous
04/08/2021 11:35
Subject: Kennedy Krieger Autism evaluation? Take it or get a second opinion?
I am a little confused. It sounds like your child has pervasive delays and needs and needs support. What supports did they recommend? Are you asking if someone else would conclude that she was not autistic? And if so, why? Do you not think she is?
Anonymous
04/08/2021 11:26
Subject: Kennedy Krieger Autism evaluation? Take it or get a second opinion?
Pp, sorry for the long post. But I really don't have anyone to this through with. Bonus points if you can also direct me to a therapist or advocate that helps parents and families short all this stuff out.
Anonymous
04/08/2021 11:25
Subject: Kennedy Krieger Autism evaluation? Take it or get a second opinion?
So, we have been bouncing around to different specialists for a couple years. We have what we feel is a fairly good primary at CNH and have also seen GPs at the Columbia campus when we could get into the main/primary complex care GP. Our child also has a Peds Developmental specialist at CNHs since 4. She felt the DD might be on the Autism, or have a combination of ADHD, Anxiety. But, our DD is a complex case with learning delays and early childhood neglect/trauma (pre-adoption& adoption related) and a couple minor but on going medical conditions.
Our child had PT/OT, Speech at CNHs during the 3-5 year old range. In K we decide the school services were working fairly well but kept on wait list for OT (after a summer break) and behavior evaluations.
With most of the behaviors/concerns being on the cusp and the complex both the GP & Developmental Peds wanted to wait on a Autism evaluation. But once settled for a few years, the age of 6/7 and things were still presenting they thought we should move forward. Hence. the referral for an ADOS at Kennedy Krieger (CNH didn't take our insurance).
Both speech & the Developmental doctor said DD presented with Autism.
I have more follow up questions for them that I couldn't organize in my brain at the time of the evaluation. Idk, as it wasn't a complete shock or anything. But, with a complex history would you get a second opinion??
I mean this is KK Cards expertise right?? Is anyone really going to disagree with them? Other than how we approach support services in or outside of school and insurance coverage it doesn't really change anything.
I don't know how the label impacts kids in the system but prior to this no I felt we just kept getting bounced around because we didn't have a diagnosis. Can Anxiety & OCD & learning delays mimick Autism.. would some where like KK miss that ( we to mention it during the evaluation).
Did you get a second opinion?
Our child had PT/OT, Speech at CNHs during the 3-5 year old range. In K we decide the school services were working fairly well but kept on wait list for OT (after a summer break) and behavior evaluations.
With most of the behaviors/concerns being on the cusp and the complex both the GP & Developmental Peds wanted to wait on a Autism evaluation. But once settled for a few years, the age of 6/7 and things were still presenting they thought we should move forward. Hence. the referral for an ADOS at Kennedy Krieger (CNH didn't take our insurance).
Both speech & the Developmental doctor said DD presented with Autism.
I have more follow up questions for them that I couldn't organize in my brain at the time of the evaluation. Idk, as it wasn't a complete shock or anything. But, with a complex history would you get a second opinion??
I mean this is KK Cards expertise right?? Is anyone really going to disagree with them? Other than how we approach support services in or outside of school and insurance coverage it doesn't really change anything.
I don't know how the label impacts kids in the system but prior to this no I felt we just kept getting bounced around because we didn't have a diagnosis. Can Anxiety & OCD & learning delays mimick Autism.. would some where like KK miss that ( we to mention it during the evaluation).
Did you get a second opinion?