ADOS. is flawed

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:The ADOS is a checklist. There is no medical testing involved. If you fit the checklist, you are diagnosed with autism in most situations. Its a very black and white test. There is no grey area with it.

Yes, a child can have genetic disorder and autism but a good diagnostician will do genetic testing to rule out before an autism diagnosis. An autism diagnosis is a catch all of we don't know what it is but it meets these traits. It very much can be something very specific that is missed or overlooked. We don't have testing or know what everything is so it is fit under autism. Often, families cannot afford genetic testing so it is not done.

No, the ADOS is not a checklist at all. You're confused.

The ADOS administered by a traines professional, together with collaboration with SLP, OT, and a psychologist, is the best we can do for diagnosing autism. It's not perfect and can be administered poorly, but that's true for all of this stuff.

That is one way of doing it. Our developmental ped did it and didn't talk to the SLP nor was anyone like his teachers consulted. It was a 30 minute appointment.

Then your dev ped did it the wrong way. It's not supposed to be done in isolation. The clinician needs to take into consideration the reports of parents, teachers etc., not base conclusions on a short procedure.

Agreed, but it is what it is. That is how he does it. Our SLP once emailed him about our referral as I was out of town and he refused to talk to her even with a release. He is always very responsive and nice to us but he will not consult with outside providers.

Yikes. Name?

Camarata's most recent book has a good chapter on what an evaluation should look like and the professionals that should be involved.

Our going to Dr. Camarata was a huge waste of time. I wish people would stop pushing them. I think at one point he was great but he's too stretched thin. Our evaluation was good as our child did very well with him and he's a really nice guy but another SLP, who was terrible was in the room and she wrote the report where there was no diagnosis and only raw test scores. He really didn't recommend anything since we had a great SLP and the school was working out very well. We didn't spend much and Nashville was fun.

I know what a good evaluation looks like. That is not the issue. We have to do things in a specific way because of our insurance. We don't have a lot of options if we want insurance to help pay for services.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Well, ADOS is as good a tool that we can use at the moment. Diagnoses are fluid in many respects. Ther is no harm for a child who is labeled as autistic to be rediagnosed as language impaired later on.

I am on a whole message board of parents who will tell you that is not their experience. Once that autism label is on, you can't get it off, and every school decision is driven by that label, and the way your child is perceived and treated is also driven through that label.

We can't get ours off even though are child is doing well, we are done with private services and no academic issues. Its an issue it is electronic records so it will remain there for the rest of his life and will follow him, even if we can get a rule out later one. If he ever gets a security clearance or another high level job, it will be looked at and it will follow him. When we see other doctors, its one of the first things we are asked about. Not why we are at the doctor or ER, but about that. Then, the doc spends more time talking about it, than the real issue and giving us advice on a second opinion, etc. We've had many opinions but none count but this one doctor. (and I do believe it is partly to help with getting services easily as he has been really helpful and generous with them).

If it is not done in the school system and just a private evaluation that is not shared, yes, it will not impact the child. But today, most kids have it within their school records (ours does not) and some like us have electronic medical records so it does follow the child.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:The ADOS is a checklist. There is no medical testing involved. If you fit the checklist, you are diagnosed with autism in most situations. Its a very black and white test. There is no grey area with it.

Yes, a child can have genetic disorder and autism but a good diagnostician will do genetic testing to rule out before an autism diagnosis. An autism diagnosis is a catch all of we don't know what it is but it meets these traits. It very much can be something very specific that is missed or overlooked. We don't have testing or know what everything is so it is fit under autism. Often, families cannot afford genetic testing so it is not done.

No, the ADOS is not a checklist at all. You're confused.

The ADOS administered by a traines professional, together with collaboration with SLP, OT, and a psychologist, is the best we can do for diagnosing autism. It's not perfect and can be administered poorly, but that's true for all of this stuff.

That is one way of doing it. Our developmental ped did it and didn't talk to the SLP nor was anyone like his teachers consulted. It was a 30 minute appointment.

Then your dev ped did it the wrong way. It's not supposed to be done in isolation. The clinician needs to take into consideration the reports of parents, teachers etc., not base conclusions on a short procedure.

Agreed, but it is what it is. That is how he does it. Our SLP once emailed him about our referral as I was out of town and he refused to talk to her even with a release. He is always very responsive and nice to us but he will not consult with outside providers.

Yikes. Name?

Camarata's most recent book has a good chapter on what an evaluation should look like and the professionals that should be involved.

Our going to Dr. Camarata was a huge waste of time. I wish people would stop pushing them. I think at one point he was great but he's too stretched thin. Our evaluation was good as our child did very well with him and he's a really nice guy but another SLP, who was terrible was in the room and she wrote the report where there was no diagnosis and only raw test scores. He really didn't recommend anything since we had a great SLP and the school was working out very well. We didn't spend much and Nashville was fun.

I know what a good evaluation looks like. That is not the issue. We have to do things in a specific way because of our insurance. We don't have a lot of options if we want insurance to help pay for services.

yes, I should have qualified that I don't have any opinion about Camarata as an individual provider; just that his book The Intuitive Parent had a really helpful chapter on how to go about evaluations. I didn't agree with all of that book, but that one chapter was good.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:The ADOS is a checklist. There is no medical testing involved. If you fit the checklist, you are diagnosed with autism in most situations. Its a very black and white test. There is no grey area with it.

Yes, a child can have genetic disorder and autism but a good diagnostician will do genetic testing to rule out before an autism diagnosis. An autism diagnosis is a catch all of we don't know what it is but it meets these traits. It very much can be something very specific that is missed or overlooked. We don't have testing or know what everything is so it is fit under autism. Often, families cannot afford genetic testing so it is not done.

No, the ADOS is not a checklist at all. You're confused.

The ADOS administered by a traines professional, together with collaboration with SLP, OT, and a psychologist, is the best we can do for diagnosing autism. It's not perfect and can be administered poorly, but that's true for all of this stuff.

That is one way of doing it. Our developmental ped did it and didn't talk to the SLP nor was anyone like his teachers consulted. It was a 30 minute appointment.

Then your dev ped did it the wrong way. It's not supposed to be done in isolation. The clinician needs to take into consideration the reports of parents, teachers etc., not base conclusions on a short procedure.

Agreed, but it is what it is. That is how he does it. Our SLP once emailed him about our referral as I was out of town and he refused to talk to her even with a release. He is always very responsive and nice to us but he will not consult with outside providers.

Yikes. Name?

Camarata's most recent book has a good chapter on what an evaluation should look like and the professionals that should be involved.

Our going to Dr. Camarata was a huge waste of time. I wish people would stop pushing them. I think at one point he was great but he's too stretched thin. Our evaluation was good as our child did very well with him and he's a really nice guy but another SLP, who was terrible was in the room and she wrote the report where there was no diagnosis and only raw test scores. He really didn't recommend anything since we had a great SLP and the school was working out very well. We didn't spend much and Nashville was fun.

I know what a good evaluation looks like. That is not the issue. We have to do things in a specific way because of our insurance. We don't have a lot of options if we want insurance to help pay for services.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:The ADOS is a checklist. There is no medical testing involved. If you fit the checklist, you are diagnosed with autism in most situations. Its a very black and white test. There is no grey area with it.

Yes, a child can have genetic disorder and autism but a good diagnostician will do genetic testing to rule out before an autism diagnosis. An autism diagnosis is a catch all of we don't know what it is but it meets these traits. It very much can be something very specific that is missed or overlooked. We don't have testing or know what everything is so it is fit under autism. Often, families cannot afford genetic testing so it is not done.

No, the ADOS is not a checklist at all. You're confused.

The ADOS administered by a traines professional, together with collaboration with SLP, OT, and a psychologist, is the best we can do for diagnosing autism. It's not perfect and can be administered poorly, but that's true for all of this stuff.

That is one way of doing it. Our developmental ped did it and didn't talk to the SLP nor was anyone like his teachers consulted. It was a 30 minute appointment.

Then your dev ped did it the wrong way. It's not supposed to be done in isolation. The clinician needs to take into consideration the reports of parents, teachers etc., not base conclusions on a short procedure.

Agreed, but it is what it is. That is how he does it. Our SLP once emailed him about our referral as I was out of town and he refused to talk to her even with a release. He is always very responsive and nice to us but he will not consult with outside providers.

Yikes. Name?

Camarata's most recent book has a good chapter on what an evaluation should look like and the professionals that should be involved.

Our going to Dr. Camarata was a huge waste of time. I wish people would stop pushing them. I think at one point he was great but he's too stretched thin. Our evaluation was good as our child did very well with him and he's a really nice guy but another SLP, who was terrible was in the room and she wrote the report where there was no diagnosis and only raw test scores. He really didn't recommend anything since we had a great SLP and the school was working out very well. We didn't spend much and Nashville was fun.

I know what a good evaluation looks like. That is not the issue. We have to do things in a specific way because of our insurance. We don't have a lot of options if we want insurance to help pay for services.

We saw him back when he worked with his wife. She now has a solo practice but uses him for consults. I know you had a bad experience, but I'm getting reports almost weekly from parents who've seen Mary in her practice and been thrilled with the assessments and feedback they are give. The weak part is getting reports back; the Camaratas are stretched thin, I think.

The evaluation we got 10 years ago from them as a team really turned our family around. I can't imagine where we'd be without it.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Well, ADOS is as good a tool that we can use at the moment. Diagnoses are fluid in many respects. Ther is no harm for a child who is labeled as autistic to be rediagnosed as language impaired later on.

I am on a whole message board of parents who will tell you that is not their experience. Once that autism label is on, you can't get it off, and every school decision is driven by that label, and the way your child is perceived and treated is also driven through that label.

We can't get ours off even though are child is doing well, we are done with private services and no academic issues. Its an issue it is electronic records so it will remain there for the rest of his life and will follow him, even if we can get a rule out later one. If he ever gets a security clearance or another high level job, it will be looked at and it will follow him. When we see other doctors, its one of the first things we are asked about. Not why we are at the doctor or ER, but about that. Then, the doc spends more time talking about it, than the real issue and giving us advice on a second opinion, etc. We've had many opinions but none count but this one doctor. (and I do believe it is partly to help with getting services easily as he has been really helpful and generous with them).

If it is not done in the school system and just a private evaluation that is not shared, yes, it will not impact the child. But today, most kids have it within their school records (ours does not) and some like us have electronic medical records so it does follow the child.

No EMRs do not follow you for life because we don't have national health insurance for starters. Plus, by the time your kid grows up there probably won't be as much ignorance and prejudice about autism.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Well, ADOS is as good a tool that we can use at the moment. Diagnoses are fluid in many respects. Ther is no harm for a child who is labeled as autistic to be rediagnosed as language impaired later on.

I am on a whole message board of parents who will tell you that is not their experience. Once that autism label is on, you can't get it off, and every school decision is driven by that label, and the way your child is perceived and treated is also driven through that label.

We can't get ours off even though are child is doing well, we are done with private services and no academic issues. Its an issue it is electronic records so it will remain there for the rest of his life and will follow him, even if we can get a rule out later one. If he ever gets a security clearance or another high level job, it will be looked at and it will follow him. When we see other doctors, its one of the first things we are asked about. Not why we are at the doctor or ER, but about that. Then, the doc spends more time talking about it, than the real issue and giving us advice on a second opinion, etc. We've had many opinions but none count but this one doctor. (and I do believe it is partly to help with getting services easily as he has been really helpful and generous with them).

If it is not done in the school system and just a private evaluation that is not shared, yes, it will not impact the child. But today, most kids have it within their school records (ours does not) and some like us have electronic medical records so it does follow the child.

No EMRs do not follow you for life because we don't have national health insurance for starters. Plus, by the time your kid grows up there probably won't be as much ignorance and prejudice about autism.

Yes, the do depending on your insurance. You are looking at things from your situation and not from someone else. My child has electronic medical records that are easily accessed. There isn't as much ignorance or prejudice about autism as you think. Its not very well defined and its overused at this point as we don't have anything else better to describe kids who don't fit into the norm.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:The ADOS is a checklist. There is no medical testing involved. If you fit the checklist, you are diagnosed with autism in most situations. Its a very black and white test. There is no grey area with it.

Yes, a child can have genetic disorder and autism but a good diagnostician will do genetic testing to rule out before an autism diagnosis. An autism diagnosis is a catch all of we don't know what it is but it meets these traits. It very much can be something very specific that is missed or overlooked. We don't have testing or know what everything is so it is fit under autism. Often, families cannot afford genetic testing so it is not done.

No, the ADOS is not a checklist at all. You're confused.

The ADOS administered by a traines professional, together with collaboration with SLP, OT, and a psychologist, is the best we can do for diagnosing autism. It's not perfect and can be administered poorly, but that's true for all of this stuff.

That is one way of doing it. Our developmental ped did it and didn't talk to the SLP nor was anyone like his teachers consulted. It was a 30 minute appointment.

Then your dev ped did it the wrong way. It's not supposed to be done in isolation. The clinician needs to take into consideration the reports of parents, teachers etc., not base conclusions on a short procedure.

Agreed, but it is what it is. That is how he does it. Our SLP once emailed him about our referral as I was out of town and he refused to talk to her even with a release. He is always very responsive and nice to us but he will not consult with outside providers.

Yikes. Name?

Camarata's most recent book has a good chapter on what an evaluation should look like and the professionals that should be involved.

Our going to Dr. Camarata was a huge waste of time. I wish people would stop pushing them. I think at one point he was great but he's too stretched thin. Our evaluation was good as our child did very well with him and he's a really nice guy but another SLP, who was terrible was in the room and she wrote the report where there was no diagnosis and only raw test scores. He really didn't recommend anything since we had a great SLP and the school was working out very well. We didn't spend much and Nashville was fun.

I know what a good evaluation looks like. That is not the issue. We have to do things in a specific way because of our insurance. We don't have a lot of options if we want insurance to help pay for services.

We saw him back when he worked with his wife. She now has a solo practice but uses him for consults. I know you had a bad experience, but I'm getting reports almost weekly from parents who've seen Mary in her practice and been thrilled with the assessments and feedback they are give. The weak part is getting reports back; the Camaratas are stretched thin, I think.

The evaluation we got 10 years ago from them as a team really turned our family around. I can't imagine where we'd be without it.

10 years ago they were probably better. They should not be taking in as many families if they cannot do the work or Mary should hire support staff. Dr. Camarata has some support staff but he does not have one specific person assigned to him and the person we got he never worked with and it was a horrible report. I tried to contact him multiple times and finally got a response about there isn't anything he can do.

I'm reading others having similar experiences. And, one big issue is they are making projections which they shouldn't as its always not accurate.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Well, ADOS is as good a tool that we can use at the moment. Diagnoses are fluid in many respects. Ther is no harm for a child who is labeled as autistic to be rediagnosed as language impaired later on.

I am on a whole message board of parents who will tell you that is not their experience. Once that autism label is on, you can't get it off, and every school decision is driven by that label, and the way your child is perceived and treated is also driven through that label.

We can't get ours off even though are child is doing well, we are done with private services and no academic issues. Its an issue it is electronic records so it will remain there for the rest of his life and will follow him, even if we can get a rule out later one. If he ever gets a security clearance or another high level job, it will be looked at and it will follow him. When we see other doctors, its one of the first things we are asked about. Not why we are at the doctor or ER, but about that. Then, the doc spends more time talking about it, than the real issue and giving us advice on a second opinion, etc. We've had many opinions but none count but this one doctor. (and I do believe it is partly to help with getting services easily as he has been really helpful and generous with them).

If it is not done in the school system and just a private evaluation that is not shared, yes, it will not impact the child. But today, most kids have it within their school records (ours does not) and some like us have electronic medical records so it does follow the child.

No EMRs do not follow you for life because we don't have national health insurance for starters. Plus, by the time your kid grows up there probably won't be as much ignorance and prejudice about autism.

Yes, the do depending on your insurance. You are looking at things from your situation and not from someone else. My child has electronic medical records that are easily accessed.

No electronic medical records do not track you for life in the US. It doesn't matter what insurance you have. This is just fact not an opinion. You don't understand how EMRs work; you just understand how your current health insurance works. If the republicans get there way you probably won't have that option either.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Well, ADOS is as good a tool that we can use at the moment. Diagnoses are fluid in many respects. Ther is no harm for a child who is labeled as autistic to be rediagnosed as language impaired later on.

I am on a whole message board of parents who will tell you that is not their experience. Once that autism label is on, you can't get it off, and every school decision is driven by that label, and the way your child is perceived and treated is also driven through that label.

We can't get ours off even though are child is doing well, we are done with private services and no academic issues. Its an issue it is electronic records so it will remain there for the rest of his life and will follow him, even if we can get a rule out later one. If he ever gets a security clearance or another high level job, it will be looked at and it will follow him. When we see other doctors, its one of the first things we are asked about. Not why we are at the doctor or ER, but about that. Then, the doc spends more time talking about it, than the real issue and giving us advice on a second opinion, etc. We've had many opinions but none count but this one doctor. (and I do believe it is partly to help with getting services easily as he has been really helpful and generous with them).

If it is not done in the school system and just a private evaluation that is not shared, yes, it will not impact the child. But today, most kids have it within their school records (ours does not) and some like us have electronic medical records so it does follow the child.

No EMRs do not follow you for life because we don't have national health insurance for starters. Plus, by the time your kid grows up there probably won't be as much ignorance and prejudice about autism.

Yes, the do depending on your insurance. You are looking at things from your situation and not from someone else. My child has electronic medical records that are easily accessed. There isn't as much ignorance or prejudice about autism as you think. Its not very well defined and its overused at this point as we don't have anything else better to describe kids who don't fit into the norm.

If it's overused, it's not because they can't think of anything better, but because it is the diagnosis that will get coverage.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Well, ADOS is as good a tool that we can use at the moment. Diagnoses are fluid in many respects. Ther is no harm for a child who is labeled as autistic to be rediagnosed as language impaired later on.

I am on a whole message board of parents who will tell you that is not their experience. Once that autism label is on, you can't get it off, and every school decision is driven by that label, and the way your child is perceived and treated is also driven through that label.

We can't get ours off even though are child is doing well, we are done with private services and no academic issues. Its an issue it is electronic records so it will remain there for the rest of his life and will follow him, even if we can get a rule out later one. If he ever gets a security clearance or another high level job, it will be looked at and it will follow him. When we see other doctors, its one of the first things we are asked about. Not why we are at the doctor or ER, but about that. Then, the doc spends more time talking about it, than the real issue and giving us advice on a second opinion, etc. We've had many opinions but none count but this one doctor. (and I do believe it is partly to help with getting services easily as he has been really helpful and generous with them).

If it is not done in the school system and just a private evaluation that is not shared, yes, it will not impact the child. But today, most kids have it within their school records (ours does not) and some like us have electronic medical records so it does follow the child.

No EMRs do not follow you for life because we don't have national health insurance for starters. Plus, by the time your kid grows up there probably won't be as much ignorance and prejudice about autism.

Yes, the do depending on your insurance. You are looking at things from your situation and not from someone else. My child has electronic medical records that are easily accessed.

No electronic medical records do not track you for life in the US. It doesn't matter what insurance you have. This is just fact not an opinion. You don't understand how EMRs work; you just understand how your current health insurance works. If the republicans get there way you probably won't have that option either.

Yes, they do. I do understand how it works. They don't just disappear.

[Anonymous]

No you don't understand EMRs. You think you do. Also, when do you think you'll get over the diagnosis that gave you access to services. It's been YEARS that you've brought up this up here. Stay on the MERLD list serves if you're so intent on spreading misinformation.

[Anonymous]

An ASD diagnosis should not take one tool or even one assessment session. The correct way is a team approach of OT, PT, SLP, Psychologist, using observations, interviews, standardized and non standardized assessments. The ADOS is an excellent assessment to add into a battery to provide child directed data re response to a variety of stimuli and it has 2 raters , for increased validity. It should not be used if only one person was with the child, as one plays with or close by the child, while the other observes and writes down clinical information. Then together they score the responses.
If a child is known to have a genetic condition, a therapist or provider cannot treat that gene array , but can work on the symptoms. So the ADOS does provide a vilid measure to develop goals. And the child may need ASD programming to help with challenges , but the team knows the cause vs not knowing. So for an IEP that child can then be ASD, or Health Impaired, or Multiple Disability, but it is best to classify so that the child can receive the best supports. same goes for outpatient especially if need insurance to cover costs.

[Anonymous]

Anonymous wrote:No you don't understand EMRs. You think you do. Also, when do you think you'll get over the diagnosis that gave you access to services. It's been YEARS that you've brought up this up here. Stay on the MERLD list serves if you're so intent on spreading misinformation.

What do you think happens to them? They just get turned off or locked down? My child will be on this insurance till he ages out.

[Anonymous]

Anonymous wrote:An ASD diagnosis should not take one tool or even one assessment session. The correct way is a team approach of OT, PT, SLP, Psychologist, using observations, interviews, standardized and non standardized assessments. The ADOS is an excellent assessment to add into a battery to provide child directed data re response to a variety of stimuli and it has 2 raters , for increased validity. It should not be used if only one person was with the child, as one plays with or close by the child, while the other observes and writes down clinical information. Then together they score the responses.
If a child is known to have a genetic condition, a therapist or provider cannot treat that gene array , but can work on the symptoms. So the ADOS does provide a vilid measure to develop goals. And the child may need ASD programming to help with challenges , but the team knows the cause vs not knowing. So for an IEP that child can then be ASD, or Health Impaired, or Multiple Disability, but it is best to classify so that the child can receive the best supports. same goes for outpatient especially if need insurance to cover costs.

Ok, agree that is the correct way, but often it is done by one doctor for a 45-60 minute office visit and then you get a diagnosis. Our insurance did pay for genetic testing but many parents I know opt out due to financial costs. This is the only provider my child doesn't respond to (not sure why). There was no OT or SLP. (no need for PT)