Misdiagnosed?

[Anonymous]

Someone once posted here a list of factors you should look for in the autism diagnostic process. It involved a multidisciplinary team and administration of the ADOS and other validated instruments. With something as serious and potentially misdiagnosed as autism I would absolutely make sure my kid got a second opinion and that all the tests were administered reliably. For the ADOS in particular I would try to get to a research center like the NIH to ensure the practitiiners were very well trained.

That said, your child has something going on to be in this place. Focus on the therapies that address the symptoms and getting a strong team put together. When your child gets closer to 4-5 everything should be much clearer.

[Anonymous]

Can anyone tell me who they went to when they suspected MERLD not ASD? Is there a MERLD expert in the DC area or even at children's?

[Anonymous]

Anonymous wrote:Someone once posted here a list of factors you should look for in the autism diagnostic process. It involved a multidisciplinary team and administration of the ADOS and other validated instruments. With something as serious and potentially misdiagnosed as autism I would absolutely make sure my kid got a second opinion and that all the tests were administered reliably. For the ADOS in particular I would try to get to a research center like the NIH to ensure the practitiiners were very well trained.

That said, your child has something going on to be in this place. Focus on the therapies that address the symptoms and getting a strong team put together. When your child gets closer to 4-5 everything should be much clearer.

Here is that info. Note that most language delayed children don't get this thorough evaluation, which is a differential diagnosis;;; ie EVERY diagnosis is on the table.

https://autismallianceofmichigan.org/about-autism-2/how-to-find-a-quality-program/choosing-diagnostic-services/

Conducted by licensed physicians, psychologists, psychiatrists, and/or neurologists. Perhaps more important than the type of specialists you see, is the training, experience, and documentation of credentials that make that individual competent to diagnose autism. Autism a complex disorder which mirrors many other developmental and psychiatric disorders. Diagnosticians should be highly competent in recognizing the wide range of normal and atypical development, as well as being trained and experiences with multiple, differential diagnoses which might better explain behavior, communication, and social deficits than autism. To assure these recommendations are met, consider a multidisciplinary evaluation.

Inquire about the college/university the clinician attended. Quality university programs are accredited by specific college boards which apply rigorous standards for curriculum and training experiences.

Multiple specialists: We highly recommend evaluation by a multidisciplinary team of specialists, with expertise across at least 2-3 areas to assure an accurate and reliable diagnosis.

Assessment Protocol:

Thorough review of history through parent/caregiver report and previous evaluations:

1. Medical
2. Developmental
3. Educational

4. Therapy
5. Family history

Interview: Parent/Caregiver and Teacher/Child care provider (when applicable): To review history and present concerns.

Standardized assessment tools: A good evaluation should include extensive history review, parent/caregiver/teacher interviews/input, direct observation, standardized assessments (when possible), and use of autism specific protocols/tools.

Beware of professionals who make a diagnosis simply by observing your child for a short period of time and who do not use diagnostic tests/tools.

Assessment Results:

Make sure you come prepared with questions for the clinician. Prepare these ahead of time. Some questions you might consider asking:

1. What are the signs or behaviors you observed that led you to the diagnosis?
2. How did my child perform on the tests that were used?
3. What severity or functioning level do you feel my child is at? Can you place him/her in a PDD, Autism, or Aspergers diagnosis?
4. What other evaluations may be needed, to confirm the diagnosis or to assist in treatment planning?
5. What therapies will be most effective?
6. What educational services and supports will be needed?
7. Am I eligible for services and/or supports through Community Mental Health?
8. Where can I get information about low cost therapies? Are there other sources of funding which are available for therapy costs?
9. Are there on-line sources which might be helpful to understand the disorder or help me locate services?
10. Where can I go to get legal advice or learn about my rights as a parent?

[Anonymous]

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.

[Anonymous]

Two is really so young. For an ASD diagnosis, there should be a number of issues that a tester sees -- not just speech issues. I know ASD is being diagnosed earlier and earlier but, for us, we got an ASD diagnosis at 3.5 and I must say that things about my child's behavior were much more clear. I totally could see what the evaluator saw in the ADOS test. No one should just spend 30 minutes with a child that young and say it's autism.

[Anonymous]

I'm not looking for an ASD diagnosis I'm looking for some answers regarding my sons speech delay. I want to make sure I'm doing everything I can to foster his development and make sure the therapy provided to him is appropriate. I'd also love some suggestions from a highly skilled professional and Dr. Camarata and his wife seem to be the best in the industry.

[Anonymous]

Op I would not worry so much about avoiding an asd diagnosis. I have a son who at 4 has been evaluated many times and has some speech delay and some fine motor delay and attention and social issues. We have not been told asd in any of our many evals because apparently he is not. That does not make our lives easier you realize. I've often wished for a clear diagnosis. Recently we going out he also has epilepsy which just further complicates the matter. Don't be so opposed to answers or opinions. Doctors are careful. The vast majority. They are not just handing out diagnoses like candy.

[Anonymous]

I'm the poster with a middle school child that saw Dr. Camarata when he was very young. Dr. Camarata and his wife work together. They are both very passionate about their work. I first saw someone at Children's but went to Camarata for a second opinion. He does many different tests that others do not -- my DS could bary talk but Camarata showed me that my son could read. Everything he predicted came true. I don't think anyone in this area can give you the same kind of insight. We still had many years of local speech therapy though. Dr. Camarata has always taken the time to return my calls personally, even when he is traveling -- but you need to be one of his patients.

[Anonymous]

Anonymous wrote:Op I would not worry so much about avoiding an asd diagnosis. I have a son who at 4 has been evaluated many times and has some speech delay and some fine motor delay and attention and social issues. We have not been told asd in any of our many evals because apparently he is not. That does not make our lives easier you realize. I've often wished for a clear diagnosis. Recently we going out he also has epilepsy which just further complicates the matter. Don't be so opposed to answers or opinions. Doctors are careful. The vast majority. They are not just handing out diagnoses like candy.

Not all doctors are "careful." Doctors misdiagnose all the time, especially autism. You are lucky if you got the proper diagnosis. We didn't.

[Anonymous]

Anonymous wrote:I'm the poster with a middle school child that saw Dr. Camarata when he was very young. Dr. Camarata and his wife work together. They are both very passionate about their work. I first saw someone at Children's but went to Camarata for a second opinion. He does many different tests that others do not -- my DS could bary talk but Camarata showed me that my son could read. Everything he predicted came true. I don't think anyone in this area can give you the same kind of insight. We still had many years of local speech therapy though. Dr. Camarata has always taken the time to return my calls personally, even when he is traveling -- but you need to be one of his patients.

They no longer work together. Dr. Camarata is at Vanderbilt and Mary Camarata is in private practice. Our experience was mixed and now I don't think the diagnosis he gave us a year ago was correct either. I think our SPL is the only one who is right. He had some helpful things to say but the report was worthless as he does not write his reports. He hasn't responded to me. He is very well intentioned and knows his stuff BUT he's stretched thin and relies on others to do his reports which were worthless. We called Mary Camarata and she referred us to her husband as our main question was autism vs. language disorder. (within 5 minutes he said language, no autism).

OP, no one can give you the answers you are looking for - why?

They can give you guidance on therapy, parenting, academics, etc. They can look over reports and let you know if the therapist is good or you need to switch. They can give you advice on activities, lifestyle choices, etc.

They can give you a general idea if it is autism or a language disorder.

We had a really bad experience at Children's who said my kid was fine. He's been in speech therapy for years. They refused to provide therapy.

My son was reading before he was talking too. (don't underestimate these kids)

If you have services you are happy with, I'd wait till 4-4.5 to go, if you go.

[Anonymous]

I literally picked up the phone to call to schedule an appointment and he answered the phone. Dr. Camarata talked to me for about 30 minutes today and gave me some great information. He did say his wife has her own practice. I didn't ask him but does anyone know if he works with his wife on some cases? He was lovely on the phone btw. Unlike when you call a doctor or center hear and you get the old "we aren't taking new patients" or you have to go through some serious intake and a millions people later to make an appointment.

[Anonymous]

Anonymous wrote:I literally picked up the phone to call to schedule an appointment and he answered the phone. Dr. Camarata talked to me for about 30 minutes today and gave me some great information. He did say his wife has her own practice. I didn't ask him but does anyone know if he works with his wife on some cases? He was lovely on the phone btw. Unlike when you call a doctor or center hear and you get the old "we aren't taking new patients" or you have to go through some serious intake and a millions people later to make an appointment.

You got lucky. We did not have much of a problem getting an apt but it was a few months out. You can google her and get her website and contact. They chat about kids but they no longer officially work together. They refer to each other. He's that warm in person and good with kids. It's an easy trip from dc. Southwest has a direct flight. Airport is close to downtown or Vanderbilt. There is a great science center there. It was still cheaper to fly out than private pay for an evaluation privately. Vanderbilt takes insurance but ours would not pay.

[Anonymous]

PP would you make the spot with her or with the clinic at Vanderbilt that he oversees? He said he consults on cases at Vanderbilt especially if requested but doesn't do the entire evaluation but come in at the end. He was so kind on the phone. I was shocked. I literally cannot even get my own pediatrician to call me only the nurse who said the dr will not call me back. I wanted to ask her about a referral to a developmental pediatrician and they literally told me to call my insurance company and see who they recommend. I said I don't care about insurance and will pay out of pocket and she said she'd ask but doubted a dr would call me. I go to children's national pediatric and and associates and was shocked that a dr won't call me. Dr. Camarata seemed very kind and sincere. Unlike the doctors in the DC area.

[Anonymous]

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.

[Anonymous]

I mean children's pediatric and and associates.