Loaded question: MERLD and autism

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:
MERLD can be an early catch-all when the symptoms don't quite add up to an autism or ADHD diagnosis. What people need to understand is that you don't observe young children and older children with the same battery of tests, and that therefore MERLD diagnoses are more frequent in younger children, and ASD/ADHD/etc diagnoses are more frequent in older children. MERLD is a symptomatic observation. It does NOT mean a 100% risk of Autism diagnosis down the road, but it certainly increases the likehood.

My son was diagnosed with MERLD as a preschooler, then was given a full neuropsych in late elementary and diagnosed with severe ADHD, inattentive type. We refused the additional tests for Asperger's, but we know he has always had Aspie tendencies, and that Aspie tendencies run in my husband's family.

if you refused diagnostic tests how can you speak definitively about it?

You really want to know?
1. Because I'm a research scientist who has read quite a bit of primary research literature on the subject, as well as observed my husband, and his family, closely.
3. Because we talked to several psychiatrists, psychologists and developmental pediatricians over the years, and they all said that yes, DS had tendencies, but even if more tests were done, they still might not lead to a definitive diagnosis. He's on the cusp, and it could go both ways, and it doesn't really matter anyway since we know he has tendencies, know how to manage them, and it's the ADHD which is really burdensome right now.

He has accommodations at school as well as medication for the ADHD, and that is what matters.

Is this the OP? I don't think you necessarily need a definitive diagnosis at the moment. If he has accommodations at school, are they working? And despite what PP mentioned, you can certainly do ABA or behavioral therapy with a child diagnosed with MERLD. I'm also really surprised that you're medicating so early. I would exhaust behavioral options first. If you are medicating, it may be trial and error.

P.S. I find it hilarious that you've been "observing" your husband and his family closely. The only genetic link they've found to autism is older fathers. Plus, as a research scientist, you're probably just as socially awkward as he and his kin are, you just don't realize it.

Bottom line, expressive and receptive delays can cause problems for a kid whether or not they're on the spectrum. Keep treating the symptoms. If you want a more definitive diagnosis wait until your kid is at least age 6 and then get an educational evaluation.

No, I am not the OP, and no, I am not scared of an autism diagnosis. My 11 year old son has severe ADHD, which given his family and birth history is not surprising, and he *may* additionally be barely on the cusp of Asperger's. I pursued the ADHD label in order to get school services and medication for him. A formal label for Asperger's will not get him the services he needs, so having spent 3.2K on a full neuropsych already, plus daily meds (2K annually), I don't think I need to spend one more cent on an evaluation for Asperger's right now. The psychologist told me the test might come back inconclusive, since he wasn't a clear-cut case.

And, PP, you're quite rude and ignorant.

NP. Just FYI, a child with delays in expressive and receptive language would never receive an Asperger's diagnosis under the DSM-4 no matter how much "barely on the cusp" Aspie tendencies he has.

You can't have Asperger's with a language delay. Aspergers kids generally are very talkative.

http://www.tacanow.org/about-autism/facts-about-aspergers-syndrome/

"Language: the diagnostic criteria for autism says: “There is no clinically significant delay in language (e.g., single words used by age 2 years, communicative phrases used by age 3 years).” But if you ask parents of children with autism, their kids fit that model too, yet have autism, not Asperger’s. Conversely, if you ask parents of children with Asperger’s, they may or may not have had a speech delay. Because many with autism do not speak after regression for years (or ever again), this is one point that is usually brought up as defining, when it really shouldn’t be.

The term “Little Professor” is commonly brought up about children with Asperger’s as they can talk at length with adults and use conversationally appropriate language, facts and figures about the subject, like an adult expert might do. If you only read a transcript of their conversation, you likely wouldn’t know it came from a child."

[Anonymous]

Anonymous wrote:

Anonymous wrote:Just tell them your child has been tested for ASD and it has been ruled out. (Which is true, I assume?)

Yes, based on the dev pediatrician evil, it has been ruled out. Our 3 year IEP revaluation is coming up and the team has to decide what testing our child needs so that she gets the supports that she needs to go to K. So I am wondering what tests they are going to suggest for our child.

Sorry OP, I haven't read most of the other stuff because, as usual, people seem to be talking about their own issues rather than trying to focus on your concerns.

I don't live in DC, but I can tell you in our area it is only psychologists who do the ADOS, though there are definitely developmental pediatricians who will diagnose or rule out autism without it. If your child truly received a comprehensive evaluation for autism from the developmental pediatrician, including an ADOS, as well as an autism diagnostic interview with you, then it doesn't seem like there would be a need for the school to repeat it so soon. But if your child has not received an ADOS I would let the school do one if they want, along with any language and developmental testing they recommend. I mean, why not? If they complete the testing and you do not understand or agree with the results you can always pursue a private re-evaluation later.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Just tell them your child has been tested for ASD and it has been ruled out. (Which is true, I assume?)

Yes, based on the dev pediatrician evil, it has been ruled out. Our 3 year IEP revaluation is coming up and the team has to decide what testing our child needs so that she gets the supports that she needs to go to K. So I am wondering what tests they are going to suggest for our child.

Sorry OP, I haven't read most of the other stuff because, as usual, people seem to be talking about their own issues rather than trying to focus on your concerns.

I don't live in DC, but I can tell you in our area it is only psychologists who do the ADOS, though there are definitely developmental pediatricians who will diagnose or rule out autism without it. If your child truly received a comprehensive evaluation for autism from the developmental pediatrician, including an ADOS, as well as an autism diagnostic interview with you, then it doesn't seem like there would be a need for the school to repeat it so soon. But if your child has not received an ADOS I would let the school do one if they want, along with any language and developmental testing they recommend. I mean, why not? If they complete the testing and you do not understand or agree with the results you can always pursue a private re-evaluation later.

Thank you!

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Just tell them your child has been tested for ASD and it has been ruled out. (Which is true, I assume?)

Yes, based on the dev pediatrician evil, it has been ruled out. Our 3 year IEP revaluation is coming up and the team has to decide what testing our child needs so that she gets the supports that she needs to go to K. So I am wondering what tests they are going to suggest for our child.

It really depends on the actual school and staff. Some people on here have had a horrible time getting an IEP and we had no issue as well as getting speech therapy in school. We went in with a private evaluation from our SLP and the school did some other tests to document the need. It was a smooth process except we would have liked things done a bit differently and staff was not really interested in what we had to say. It wasn't worth fighting for our situation.

Back to OP and not Autism mom derailing the topic.

Our child gets twice a week group speech therapy at school. I have no idea what they are doing as the SLP does not communicate with us very much. They do not provide individual speech therapy. I forget what else is on the IEP as I don't think they are following it even though they 100% wrote the IEP without our input.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Just tell them your child has been tested for ASD and it has been ruled out. (Which is true, I assume?)

Yes, based on the dev pediatrician evil, it has been ruled out. Our 3 year IEP revaluation is coming up and the team has to decide what testing our child needs so that she gets the supports that she needs to go to K. So I am wondering what tests they are going to suggest for our child.

Sorry OP, I haven't read most of the other stuff because, as usual, people seem to be talking about their own issues rather than trying to focus on your concerns.

I don't live in DC, but I can tell you in our area it is only psychologists who do the ADOS, though there are definitely developmental pediatricians who will diagnose or rule out autism without it. If your child truly received a comprehensive evaluation for autism from the developmental pediatrician, including an ADOS, as well as an autism diagnostic interview with you, then it doesn't seem like there would be a need for the school to repeat it so soon. But if your child has not received an ADOS I would let the school do one if they want, along with any language and developmental testing they recommend. I mean, why not? If they complete the testing and you do not understand or agree with the results you can always pursue a private re-evaluation later.

OP is saying that her child has been ruled out for ASD, to you are meaning well but also derailing the topic. If OP is in private speech, she should have the private speech therapist write a report and submit that as what is seen/done in private speech is very different than what is done at the public school level. If the child is seeing a developmental ped, there is no need at 4-5 for a psychologist.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Just tell them your child has been tested for ASD and it has been ruled out. (Which is true, I assume?)

Yes, based on the dev pediatrician evil, it has been ruled out. Our 3 year IEP revaluation is coming up and the team has to decide what testing our child needs so that she gets the supports that she needs to go to K. So I am wondering what tests they are going to suggest for our child.

Sorry OP, I haven't read most of the other stuff because, as usual, people seem to be talking about their own issues rather than trying to focus on your concerns.

I don't live in DC, but I can tell you in our area it is only psychologists who do the ADOS, though there are definitely developmental pediatricians who will diagnose or rule out autism without it. If your child truly received a comprehensive evaluation for autism from the developmental pediatrician, including an ADOS, as well as an autism diagnostic interview with you, then it doesn't seem like there would be a need for the school to repeat it so soon. But if your child has not received an ADOS I would let the school do one if they want, along with any language and developmental testing they recommend. I mean, why not? If they complete the testing and you do not understand or agree with the results you can always pursue a private re-evaluation later.

OP is saying that her child has been ruled out for ASD, to you are meaning well but also derailing the topic. If OP is in private speech, she should have the private speech therapist write a report and submit that as what is seen/done in private speech is very different than what is done at the public school level. If the child is seeing a developmental ped, there is no need at 4-5 for a psychologist.

Right, except for now teachers and a psychologist suspect an ASD, and MERLD can apparently be hard to distinguish clinically from an ASD. The responsible thing to do here would be a second opinion (or new evaluation if an ADOS was never done).

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Just tell them your child has been tested for ASD and it has been ruled out. (Which is true, I assume?)

Yes, based on the dev pediatrician evil, it has been ruled out. Our 3 year IEP revaluation is coming up and the team has to decide what testing our child needs so that she gets the supports that she needs to go to K. So I am wondering what tests they are going to suggest for our child.

Sorry OP, I haven't read most of the other stuff because, as usual, people seem to be talking about their own issues rather than trying to focus on your concerns.

I don't live in DC, but I can tell you in our area it is only psychologists who do the ADOS, though there are definitely developmental pediatricians who will diagnose or rule out autism without it. If your child truly received a comprehensive evaluation for autism from the developmental pediatrician, including an ADOS, as well as an autism diagnostic interview with you, then it doesn't seem like there would be a need for the school to repeat it so soon. But if your child has not received an ADOS I would let the school do one if they want, along with any language and developmental testing they recommend. I mean, why not? If they complete the testing and you do not understand or agree with the results you can always pursue a private re-evaluation later.

OP is saying that her child has been ruled out for ASD, to you are meaning well but also derailing the topic. If OP is in private speech, she should have the private speech therapist write a report and submit that as what is seen/done in private speech is very different than what is done at the public school level. If the child is seeing a developmental ped, there is no need at 4-5 for a psychologist.

Right, except for now teachers and a psychologist suspect an ASD, and MERLD can apparently be hard to distinguish clinically from an ASD. The responsible thing to do here would be a second opinion (or new evaluation if an ADOS was never done).

Teachers are not trained in diagnosis nor do most psychologists understand language disorders. A developmental ped would be the most appropriate evaluator at this point. This has nothing to do with the OP questions or topic and you are pushing your agenda of it has to be Autism.

[Anonymous]

At Children's, KKI, etc, the developmental pediatrician will send the child for ADOS/ADI-R testing if ASD is suspected. Most dev peds (with few xceptions like Dr Shapiro who does his own ASD testing based on his experience) will not rule out ASD without ADOS... and unlike a Neuropsych eval, ADOS testing is fully covered by insurance and the ADOS testing itself takes less than an hour. Scheduling and getting it done at Children's or KKI is another story.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Just tell them your child has been tested for ASD and it has been ruled out. (Which is true, I assume?)

Yes, based on the dev pediatrician evil, it has been ruled out. Our 3 year IEP revaluation is coming up and the team has to decide what testing our child needs so that she gets the supports that she needs to go to K. So I am wondering what tests they are going to suggest for our child.

Sorry OP, I haven't read most of the other stuff because, as usual, people seem to be talking about their own issues rather than trying to focus on your concerns.

I don't live in DC, but I can tell you in our area it is only psychologists who do the ADOS, though there are definitely developmental pediatricians who will diagnose or rule out autism without it. If your child truly received a comprehensive evaluation for autism from the developmental pediatrician, including an ADOS, as well as an autism diagnostic interview with you, then it doesn't seem like there would be a need for the school to repeat it so soon. But if your child has not received an ADOS I would let the school do one if they want, along with any language and developmental testing they recommend. I mean, why not? If they complete the testing and you do not understand or agree with the results you can always pursue a private re-evaluation later.

OP is saying that her child has been ruled out for ASD, to you are meaning well but also derailing the topic. If OP is in private speech, she should have the private speech therapist write a report and submit that as what is seen/done in private speech is very different than what is done at the public school level. If the child is seeing a developmental ped, there is no need at 4-5 for a psychologist.

Right, except for now teachers and a psychologist suspect an ASD, and MERLD can apparently be hard to distinguish clinically from an ASD. The responsible thing to do here would be a second opinion (or new evaluation if an ADOS was never done).

Teachers are not trained in diagnosis nor do most psychologists understand language disorders. A developmental ped would be the most appropriate evaluator at this point. This has nothing to do with the OP questions or topic and you are pushing your agenda of it has to be Autism.

Well, this is actually the OP's question: why are teachers and psychologists still suggesting autism when the diagnosis is MERLD? I think the *responsible* answer to that is "get another evaluation/second opinion," given that ASD and MERLD can be hard to distinguish, become more clear over time, and can coexist. At the very least she should be consulting again with that dev ped. If she goes into the IEP and refuses the school's suggestion to test for autism, that seems like a questionable choice. At the very least, it means that teachers are seeing needs that they think are unmet by the MERLD supports. If OP is so very sure of the diagnosis by her developmental pediatrician, then the answer is simple: she just tells the teachers and school psychologist "thanks, it's MERLD." End of discussion. If she is really sure, then it shouldn't matter.

[Anonymous]

ADOS testing is usually conducted by a SLP and psychologist working as a team.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Just tell them your child has been tested for ASD and it has been ruled out. (Which is true, I assume?)

Yes, based on the dev pediatrician evil, it has been ruled out. Our 3 year IEP revaluation is coming up and the team has to decide what testing our child needs so that she gets the supports that she needs to go to K. So I am wondering what tests they are going to suggest for our child.

Sorry OP, I haven't read most of the other stuff because, as usual, people seem to be talking about their own issues rather than trying to focus on your concerns.

I don't live in DC, but I can tell you in our area it is only psychologists who do the ADOS, though there are definitely developmental pediatricians who will diagnose or rule out autism without it. If your child truly received a comprehensive evaluation for autism from the developmental pediatrician, including an ADOS, as well as an autism diagnostic interview with you, then it doesn't seem like there would be a need for the school to repeat it so soon. But if your child has not received an ADOS I would let the school do one if they want, along with any language and developmental testing they recommend. I mean, why not? If they complete the testing and you do not understand or agree with the results you can always pursue a private re-evaluation later.

OP is saying that her child has been ruled out for ASD, to you are meaning well but also derailing the topic. If OP is in private speech, she should have the private speech therapist write a report and submit that as what is seen/done in private speech is very different than what is done at the public school level. If the child is seeing a developmental ped, there is no need at 4-5 for a psychologist.

Right, except for now teachers and a psychologist suspect an ASD, and MERLD can apparently be hard to distinguish clinically from an ASD. The responsible thing to do here would be a second opinion (or new evaluation if an ADOS was never done).

Teachers are not trained in diagnosis nor do most psychologists understand language disorders. A developmental ped would be the most appropriate evaluator at this point. This has nothing to do with the OP questions or topic and you are pushing your agenda of it has to be Autism.

Well, this is actually the OP's question: why are teachers and psychologists still suggesting autism when the diagnosis is MERLD? I think the *responsible* answer to that is "get another evaluation/second opinion," given that ASD and MERLD can be hard to distinguish, become more clear over time, and can coexist. At the very least she should be consulting again with that dev ped. If she goes into the IEP and refuses the school's suggestion to test for autism, that seems like a questionable choice. At the very least, it means that teachers are seeing needs that they think are unmet by the MERLD supports. If OP is so very sure of the diagnosis by her developmental pediatrician, then the answer is simple: she just tells the teachers and school psychologist "thanks, it's MERLD." End of discussion. If she is really sure, then it shouldn't matter.

For our 3 yr IEP re-evaluation, our school gave us everything recommended in the neuropsych eval. DS has ASD/ADHD according to neuropsych and ADOS. Not sure why someone would refuse to do ADOS. It is basically a child playing and interacting with the SLP and not arduous or time consuming. The more information you have about your child, the better you can advocate for them to get the supports and services they need. Ultimately it is about meeting the needs of your child.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Just tell them your child has been tested for ASD and it has been ruled out. (Which is true, I assume?)

Yes, based on the dev pediatrician evil, it has been ruled out. Our 3 year IEP revaluation is coming up and the team has to decide what testing our child needs so that she gets the supports that she needs to go to K. So I am wondering what tests they are going to suggest for our child.

Sorry OP, I haven't read most of the other stuff because, as usual, people seem to be talking about their own issues rather than trying to focus on your concerns.

I don't live in DC, but I can tell you in our area it is only psychologists who do the ADOS, though there are definitely developmental pediatricians who will diagnose or rule out autism without it. If your child truly received a comprehensive evaluation for autism from the developmental pediatrician, including an ADOS, as well as an autism diagnostic interview with you, then it doesn't seem like there would be a need for the school to repeat it so soon. But if your child has not received an ADOS I would let the school do one if they want, along with any language and developmental testing they recommend. I mean, why not? If they complete the testing and you do not understand or agree with the results you can always pursue a private re-evaluation later.

OP is saying that her child has been ruled out for ASD, to you are meaning well but also derailing the topic. If OP is in private speech, she should have the private speech therapist write a report and submit that as what is seen/done in private speech is very different than what is done at the public school level. If the child is seeing a developmental ped, there is no need at 4-5 for a psychologist.

Right, except for now teachers and a psychologist suspect an ASD, and MERLD can apparently be hard to distinguish clinically from an ASD. The responsible thing to do here would be a second opinion (or new evaluation if an ADOS was never done).

Teachers are not trained in diagnosis nor do most psychologists understand language disorders. A developmental ped would be the most appropriate evaluator at this point. This has nothing to do with the OP questions or topic and you are pushing your agenda of it has to be Autism.

Well, this is actually the OP's question: why are teachers and psychologists still suggesting autism when the diagnosis is MERLD? I think the *responsible* answer to that is "get another evaluation/second opinion," given that ASD and MERLD can be hard to distinguish, become more clear over time, and can coexist. At the very least she should be consulting again with that dev ped. If she goes into the IEP and refuses the school's suggestion to test for autism, that seems like a questionable choice. At the very least, it means that teachers are seeing needs that they think are unmet by the MERLD supports. If OP is so very sure of the diagnosis by her developmental pediatrician, then the answer is simple: she just tells the teachers and school psychologist "thanks, it's MERLD." End of discussion. If she is really sure, then it shouldn't matter.

For our 3 yr IEP re-evaluation, our school gave us everything recommended in the neuropsych eval. DS has ASD/ADHD according to neuropsych and ADOS. Not sure why someone would refuse to do ADOS. It is basically a child playing and interacting with the SLP and not arduous or time consuming. The more information you have about your child, the better you can advocate for them to get the supports and services they need. Ultimately it is about meeting the needs of your child.

No one is refusing gone. Your child has ASD/ADHD, not MERLD so this is not even relevant. OP has had a screening. MERLD and Autism can look the same early on which is why teachers and others confuse the two. Usually a developmental ped does one. You are assuming one has not been done based on your experience. An SLP should NOT be doing an Autism screening as that is not in their speciality.

[Anonymous]

Anonymous wrote:ADOS testing is usually conducted by a SLP and psychologist working as a team.

Not always, maybe in the school system but a school should not be diagnosing a child. An SLP should NOT be screening for Autism. They should be screening for language disorders only. If yours did, they went beyond their professional boundaries.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Just tell them your child has been tested for ASD and it has been ruled out. (Which is true, I assume?)

Yes, based on the dev pediatrician evil, it has been ruled out. Our 3 year IEP revaluation is coming up and the team has to decide what testing our child needs so that she gets the supports that she needs to go to K. So I am wondering what tests they are going to suggest for our child.

Sorry OP, I haven't read most of the other stuff because, as usual, people seem to be talking about their own issues rather than trying to focus on your concerns.

I don't live in DC, but I can tell you in our area it is only psychologists who do the ADOS, though there are definitely developmental pediatricians who will diagnose or rule out autism without it. If your child truly received a comprehensive evaluation for autism from the developmental pediatrician, including an ADOS, as well as an autism diagnostic interview with you, then it doesn't seem like there would be a need for the school to repeat it so soon. But if your child has not received an ADOS I would let the school do one if they want, along with any language and developmental testing they recommend. I mean, why not? If they complete the testing and you do not understand or agree with the results you can always pursue a private re-evaluation later.

OP is saying that her child has been ruled out for ASD, to you are meaning well but also derailing the topic. If OP is in private speech, she should have the private speech therapist write a report and submit that as what is seen/done in private speech is very different than what is done at the public school level. If the child is seeing a developmental ped, there is no need at 4-5 for a psychologist.

Right, except for now teachers and a psychologist suspect an ASD, and MERLD can apparently be hard to distinguish clinically from an ASD. The responsible thing to do here would be a second opinion (or new evaluation if an ADOS was never done).

Teachers are not trained in diagnosis nor do most psychologists understand language disorders. A developmental ped would be the most appropriate evaluator at this point. This has nothing to do with the OP questions or topic and you are pushing your agenda of it has to be Autism.

Well, this is actually the OP's question: why are teachers and psychologists still suggesting autism when the diagnosis is MERLD? I think the *responsible* answer to that is "get another evaluation/second opinion," given that ASD and MERLD can be hard to distinguish, become more clear over time, and can coexist. At the very least she should be consulting again with that dev ped. If she goes into the IEP and refuses the school's suggestion to test for autism, that seems like a questionable choice. At the very least, it means that teachers are seeing needs that they think are unmet by the MERLD supports. If OP is so very sure of the diagnosis by her developmental pediatrician, then the answer is simple: she just tells the teachers and school psychologist "thanks, it's MERLD." End of discussion. If she is really sure, then it shouldn't matter.

Most teachers are not trained in language disorders which is back to the OP question so if something looks unfamiliar or fits within their limited knowledge, its easy to group it as Autism. Agree, OP should say its MERLD, but with MERLD its not that simple as most people don't even know what language disorders are.

[Anonymous]

Anonymous wrote:

Anonymous wrote:ADOS testing is usually conducted by a SLP and psychologist working as a team.

Not always, maybe in the school system but a school should not be diagnosing a child. An SLP should NOT be screening for Autism. They should be screening for language disorders only. If yours did, they went beyond their professional boundaries.

At Children's and KKI, ADOS is administered by a SLP and neuropsychologist working as a team. The SLP is trained in administering ADOS and works with the psychologist. It is pretty standard.