Misdiagnosed?

[Anonymous]

Agree what a child does or doesn't do at 2 is not the full factor. Some ASD kids are on target and regress or still have a mild case. Some language kids have all the features but as the speech comes in, they lose those features. I'd be careful with the sensory label. Everyone is throwing it around and its an OT thing to justify services. I found it a bunch of bunk for my kid.

The positive of an autism diagnosis. Many insurances cover services because its the primary diagnosis. Under speech alone its hard to get insurance to pay. The negative is there are some who treat your kid differently and they dynamic gets uncomfortable - we've had this experience many times with other parents and more importantly doctors - they assume severe autism/low functioning and do not address him/act strange till they realize something is off with the diagnosis and its a language issue (then they tell me to fight it but I've tried and the doc doesn't care).

At this point, the priority is speech therapy regardless of the diagnosis. With autism diagnosis, you can do ABA - I didn't find it helpful as it was more simple speech from someone who had no real training in it and the speech therapist was far better. The ABA therapist was lovely and she didn't do hard care ABA but I didn't see any point in it for my child who I could easily manage the behavioral part.

[Anonymous]

Anonymous wrote:Parents of a child with language delay... Any misdiagnosed as ASD and vice versa? Is it possible my 2 year old just can't talk?

My child has severe MERLD. Most kids with MERLD are misdiagnosed with autism at young ages. It's rampant, we find on in our MERLD Facebook group. children who are just late talkers, without an actual disorder, can also be misdiagnosed.

And contrary to what a PP said, MERLD is still given out as a diagnosis even though it's not the current DSM. The lack of receptive language brings on a host of issues that look like and ASD to the layperson or minimally trained "professional."

I second the Camarata book, and would also add the Eides' "The Mislabeled Child" to your reading list.

[Anonymous]

OP here... I just ordered the two books recommended. I'm very nervous that my son won't get the proper diagnosis. We have an spot at children's in 2 months and I worry. His SLP really thinks he has a mixed receptive expressive language delay. Is there an expert in DC that is best at accurately identifying and diagnosing? Is it worth it to attempt to get an appt with Dr. Camarata? I've heard mixed from our SLP on if it's worth it.

[Anonymous]

We went to Dr. Camarata. I'd wait a year or two and go at 3.5 or 4 depending on what is going on. Either he'll talk and catch up by 3.5 or its going to be more at 5-6-7 or he'll have life long struggles. They are pretty much the experts.

We had a mixed experience. He quickly ruled out autism and testing was all positive in terms of future. Because of what services we had and we have a great SPL and a good plan, he had nothing to offer in terms of making changes (normally he does). He was very kind, a great evaluator, and my son engaged with him very quickly. He noticed things that others would not (positive things). He talked a while with us about our experiences, concerns, his experiences and made helpful comments. The negative: the woman assisting was an SPL and she was terrible. She'd try talking to my son and not understand what he was saying as she had her own agenda. She wrote the report and it was terrible. It was a few of the raw test scores with no diagnosis or recommendations. We wanted it to decide if we should go to public or stay in a private we are happy with. I tried asking for a better report and Dr. Camarata was happy to talk to me on the phone, but he would not write a more professional helpful report.

Trip was easy. Direct flight to Nashville, quick drive downtown to the hotel and to see him. Easy in/easy out.

Cost is reasonable and about equal to an evaluation here even with travel.

If you want advice on what services, how to do it, it is worth going. If you want a written report, its not worth it. If you want someone to give you their best guess that at some point your child will be ok, go. If you want advice on parenting/how to deal with some of the behaviors, go.... it really just depends on what you are looking to get out of it.

There are some great Facebook groups for MERLD and language disorders. That is where I find the most support.

His books are interesting. I just got the old one not the newer.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Parents of a child with language delay... Any misdiagnosed as ASD and vice versa? Is it possible my 2 year old just can't talk?

My child has severe MERLD. Most kids with MERLD are misdiagnosed with autism at young ages. It's rampant, we find on in our MERLD Facebook group. children who are just late talkers, without an actual disorder, can also be misdiagnosed.

And contrary to what a PP said, MERLD is still given out as a diagnosis even though it's not the current DSM. The lack of receptive language brings on a host of issues that look like and ASD to the layperson or minimally trained "professional."

I second the Camarata book, and would also add the Eides' "The Mislabeled Child" to your reading list.

+1, you are referring to us. Agree with the Facebook groups. It may not be in the current DSM, but many people do not get receptive language issues as they mimic ASD. Most automatically jump to ASD. As the MERLD gets resolved, for many of us, those autism traits disappear. MERLD kids are at a higher risk for learning disabilities so watch for that, especially with reading and reading comprehension, math too. Not all do, but something to watch carefully.

Leap Frog videos, Babby Babby, Preschool Prep, Ipad apps were all helpful too. They now have Little Pim in English on Netflix or Hulu, I forget, that looks like it would be good for that age too.

[Anonymous]

my child has delayed speech. In addition to therapies I am trying supplements recommended in one of Kelly Dorfman's book. It is fish oil, vitamin E and choline.

and no, i don't think it's a magic cure. and no my child does not have MERLD, just delayed speech.

My 4 year old has only been taking it for 2 weeks so I can't even say whether it has helped or not. I'm just passing the info along in case you are interested. I'm hoping it helps my child!

[Anonymous]

For any of you with children with speech delay, have you ever tried the Signing Times videos and using Sign Language? Has it ever been suggested by a ST? My daughter who is a pediatric PT had her two children now 5 and 3 watch only Signing Times videos as youngsters and her daughter in particular picked up and used signing before language started much. For a time she combined both if she did not know the word, but say the sign as one time for bicycle. As speech emerged, signing decreased. She also read the same books to the kids nightly as she still does now on a different level which I think the repetition and familiarity with the same books helped with language with young children pointing to pictures, reading books that required to do something on a page etc. I am only mentioning two strategies which might be considered.

Our youngest has a cognitive disability, and we can remember how many times we rolled a small red ball to her - hundreds if not thousands and said red ball. We did not use signing, but we did go to speech year round for about seven years and then back at around age 13 for a year to work on greater clarity.

[Anonymous]

Are there doctors in the DC area to avoid when getting an evaluation? Are there particular doctors who are quick on the draw to diagnose ASD? What age is best for visiting a developmental pediatrician and or child psych for an evaluation to determine speech delay or autism?

[Anonymous]

My DS is now in Middle School. He had an expressive receptive language delay. I highly recommend that you see Dr. Camarata. It was well worth the trip for us. I wanted an expert opinion on what my son had so I could be sure he received the correct therapy. Dr. Camarata can tell you if its a language delay or something else. I cannot believe what my son's speech was like when I watch old videos -- it was pretty bad. We did lots of speech therapy, he went to the Maddux School, and then went to a mainstream private starting in 2nd grade. You can call Mary Camarata and talk to her about your son -- that is a good start.

[Anonymous]

PP again -- I did hear there was a doctor at Georetown that used to see kids briefly and misdiagnose them with autism -- he was notorious but I forgot his name

[Anonymous]

Anonymous wrote:

For any of you with children with speech delay, have you ever tried the Signing Times videos and using Sign Language? Has it ever been suggested by a ST? My daughter who is a pediatric PT had her two children now 5 and 3 watch only Signing Times videos as youngsters and her daughter in particular picked up and used signing before language started much. For a time she combined both if she did not know the word, but say the sign as one time for bicycle. As speech emerged, signing decreased. She also read the same books to the kids nightly as she still does now on a different level which I think the repetition and familiarity with the same books helped with language with young children pointing to pictures, reading books that required to do something on a page etc. I am only mentioning two strategies which might be considered.

Our youngest has a cognitive disability, and we can remember how many times we rolled a small red ball to her - hundreds if not thousands and said red ball. We did not use signing, but we did go to speech year round for about seven years and then back at around age 13 for a year to work on greater clarity.

We tried sign. Our child had both significant receptive and expressive delays. Because of the receptive delays, sign was a bust. We read nightly, did flash cards and other things that we had more success with. Intensive speech therapy is really important. I found videos like baby babble, leap frog and preschool prep good as well as iPad apps - elmo one is great. I found its more like you are saying with repetition and saying it hundred's of times before it clicks... eventually it does.

[Anonymous]

Anonymous wrote:PP again -- I did hear there was a doctor at Georetown that used to see kids briefly and misdiagnose them with autism -- he was notorious but I forgot his name

Ours does too.... we were seen for an hour and got the diagnosis. Then about 30-45 minutes. Different doctor, but I wouldn't rule him in or out as he gets us the services.

[Anonymous]

Anonymous wrote:My DS is now in Middle School. He had an expressive receptive language delay. I highly recommend that you see Dr. Camarata. It was well worth the trip for us. I wanted an expert opinion on what my son had so I could be sure he received the correct therapy. Dr. Camarata can tell you if its a language delay or something else. I cannot believe what my son's speech was like when I watch old videos -- it was pretty bad. We did lots of speech therapy, he went to the Maddux School, and then went to a mainstream private starting in 2nd grade. You can call Mary Camarata and talk to her about your son -- that is a good start.

Have you gone recently? Most of the families I know with older kids raved about both Dr. and Mary Camarata. Many now are having issues with reports and follow up because they are so busy and they are in such high demand as they are basically the few people who really get and enjoy these kids.

[Anonymous]

Anonymous wrote:Are there doctors in the DC area to avoid when getting an evaluation? Are there particular doctors who are quick on the draw to diagnose ASD? What age is best for visiting a developmental pediatrician and or child psych for an evaluation to determine speech delay or autism?

You may want to try Dr. Shapiro, if anyone. Our speech therapist has worked closely with him several times and speaks highly of him. He's pretty well regarded on here. You'd have to see him before age 4. I don't find a developmental ped very helpful in our situation. The SPL does much better reports and gets my child. She's been far more accurate and helpful.

[Anonymous]

Dr shapiro is not taking new patients. Well when I emailed in December he was not. Anyone know if he is now?