Misdiagnosed?

[Anonymous]

Anonymous wrote:NP here. My DS has a significant language/communication disorder. About 2 years ago, I spoke with Mary Camarata and found her to be knowledgeable and helpful. We ended up not going for an appointment because we were able to get what we needed from the school (it was an IEP battle that led me to contact her). What's been immensely helpful on this long road we've been on is having excellent assessments along the way. The first was done when DS was 2 through NIH for kids 2-5 yo suspected/diagnosed with ASD or other developmental delays. At the time we joined, DS was receiving PT services through EI and was waitlisted for ST. He had not been evaluated by anyone other than EI and we did not know if he also had ASD or not.

A multi-disciplinary team from NIH team assessed him over 2 days. Their conclusion was that he did not meet the criteria for ASD but he was delayed enough to continue in the study. I got an excellent debrief from them and a written report. I can't overemphasize how important that evaluation and report have been. We have never avoided or feared an ASD diagnosis (when your kid is as challenged as ours, you're just looking for accurate information) and in the early years, it really didn't matter because the interventions were similar/same.

My advice is to seek an study or evaluation that takes a multi-disciplinary approach. It can be difficult to tease out why certain symptoms are present but when the child is evaluated across environments/areas, you can get a better picture. You may not know what it is but you might be able to determine what it is not. GL.

Just curious is this study still going on. I think you, or someone else, posted before and I tried to find it a year ago before we went to Dr. Camarata and could not find it.

[Anonymous]

How do I find about studies at NIH such as the one your son participated in PP?

[Anonymous]

Anonymous wrote:OP here... Thank you for the replies.
As soon as I got the Late Talkers book by Camarata I haven't put it down. Those of you that have seen him, did you go to his wife's clinic or to Vanderbilt? This book has really changed my outlook on my so. So whoever mentioned it on here, I can't thank you enough.

I first saw them when they worked together at Vanderbilt. Now I've been seeing Mary through her Late Talkers Clinic. I just spoke with her last week about getting the right testing done for my child. For us, she's been a long term resource over the last 10 years (our DS has severe language issues).

They are incredibly knowledgeable. I was working with an allegedly great SLP, but once Mary saw a DVD of a speech session, she told me to stop if I couldn't get the SLP to revamp her treatments. Because it was not child led, my DS spend the whole time fighting. Luckily , the SLP took the recommendations, and lo and behold, the sessions went great after that. Even the SLP was surprised. I've had multiple issues like that where the school and other "professionals" were handling my child in exactly the wrong way, then doubling down on the method when it didn't work, spiraling my child out of control. Each time, after they followed the Camaratas recommendations, they were like, "Well, gee, that worked."

I was blown away about how much more informed and trained the Camaratas are than any other SLP I've seen. It's actually kind of scary how shallow the knowledge base is of most SLPs.

[Anonymous]

PP thank you for your reply. I am going to reach out to Mary to schedule an appt at her clinic. I think it's worth it to travel to them based on what you and others have said. I just want to make sure we are doing what is right and most beneficial for my child.

[Anonymous]

Anonymous wrote:PP thank you for your reply. I am going to reach out to Mary to schedule an appt at her clinic. I think it's worth it to travel to them based on what you and others have said. I just want to make sure we are doing what is right and most beneficial for my child.

PP here. How old is your child?

Another thing you can do before you take the trip is to schedule a half-hour phone call with her. Then she can help guide you on the best age to come based on your concerns.

[Anonymous]

My son is 2. What age did you take your child?

[Anonymous]

Anonymous wrote:My son is 2. What age did you take your child?

5. He was "in the system" starting at 2, though. Early Steps, speech therapy. No one thought he had autism though until we moved to a new state, and the new school district started hounding us about it. That sent me to message boards, where I found out about the Camaratas. It took awhile to convince my husband to take the trip. After the first time we went, he insisted we go back almost yearly to track my son's progress.