ADOS. is flawed

[Anonymous]

Anonymous wrote:I don't even understand this debate. Autism isn't a disease or disorder with a specific known cause, like tuberculosis or Down's. It's a word doctors have decided to use to describe people who present with a particular set of characteristics and limitations. If objective observers perceive those characteristics and limitations then you "have" autism, by definition, no matter how or why you got there. And because there are different underlying mechanisms causing different people to fit that profile, there will be some people who meet the autism criteria today and do not a year from now, and others who will meet them forever. The ADOS can't be "flawed" because there isn't some other, more objective or accurate perspective to critique it from. If the medical powers that be want to declare that test the definitive measure of whether you have "autism" or not, then the word just has no meaning apart from the results of that test.

Autism is thought to be a lifelong condition. Early intervention is also thought to result in better functioning later in life. So there is a push to diagnose autism early, and immediately begin treatment. The debate exists because some parents were told their kids had autism and were pushed into expensive, time-consuming treatments, but it later turned out they had a language delay or a language disorder. This raises the questions as to whether the ADOS is really the best we can do.

[Anonymous]

Anonymous wrote:

Anonymous wrote:I don't even understand this debate. Autism isn't a disease or disorder with a specific known cause, like tuberculosis or Down's. It's a word doctors have decided to use to describe people who present with a particular set of characteristics and limitations. If objective observers perceive those characteristics and limitations then you "have" autism, by definition, no matter how or why you got there. And because there are different underlying mechanisms causing different people to fit that profile, there will be some people who meet the autism criteria today and do not a year from now, and others who will meet them forever. The ADOS can't be "flawed" because there isn't some other, more objective or accurate perspective to critique it from. If the medical powers that be want to declare that test the definitive measure of whether you have "autism" or not, then the word just has no meaning apart from the results of that test.

Autism is thought to be a lifelong condition. Early intervention is also thought to result in better functioning later in life. So there is a push to diagnose autism early, and immediately begin treatment. The debate exists because some parents were told their kids had autism and were pushed into expensive, time-consuming treatments, but it later turned out they had a language delay or a language disorder. This raises the questions as to whether the ADOS is really the best we can do.

If there's a "push" for early intervention for kids with speech or communication delays not for diagnosing autism. Early intervention methods are often the same because many kids don't have a diagnosis.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I don't even understand this debate. Autism isn't a disease or disorder with a specific known cause, like tuberculosis or Down's. It's a word doctors have decided to use to describe people who present with a particular set of characteristics and limitations. If objective observers perceive those characteristics and limitations then you "have" autism, by definition, no matter how or why you got there. And because there are different underlying mechanisms causing different people to fit that profile, there will be some people who meet the autism criteria today and do not a year from now, and others who will meet them forever. The ADOS can't be "flawed" because there isn't some other, more objective or accurate perspective to critique it from. If the medical powers that be want to declare that test the definitive measure of whether you have "autism" or not, then the word just has no meaning apart from the results of that test.

Autism is thought to be a lifelong condition. Early intervention is also thought to result in better functioning later in life. So there is a push to diagnose autism early, and immediately begin treatment. The debate exists because some parents were told their kids had autism and were pushed into expensive, time-consuming treatments, but it later turned out they had a language delay or a language disorder. This raises the questions as to whether the ADOS is really the best we can do.

If there's a "push" for early intervention for kids with speech or communication delays not for diagnosing autism. Early intervention methods are often the same because many kids don't have a diagnosis.

If you don't have a diagnosis, then most insurances won't pay for treatment.

[Anonymous]

Anonymous wrote:

I'm in a state now where an autism diagnosis given by certain certified providers means by state law, you can get ABA and insurance has to cover it. So kids with all types of other types disabilities -- including being born typical but getting meningitis at birth, or having seizures, or cerebral palsy, Down syndrome, or other conditions -- and going through the full autism assessment and getting the diagnosis. But if there were not the insurance coverage for the ABA, parents would not be pursing an autism diagnosis. It's a means to an end -- and yes, they have told me this.

This is very true. I know parents who have pushed for it to have service paid for. Can't blame them.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I don't even understand this debate. Autism isn't a disease or disorder with a specific known cause, like tuberculosis or Down's. It's a word doctors have decided to use to describe people who present with a particular set of characteristics and limitations. If objective observers perceive those characteristics and limitations then you "have" autism, by definition, no matter how or why you got there. And because there are different underlying mechanisms causing different people to fit that profile, there will be some people who meet the autism criteria today and do not a year from now, and others who will meet them forever. The ADOS can't be "flawed" because there isn't some other, more objective or accurate perspective to critique it from. If the medical powers that be want to declare that test the definitive measure of whether you have "autism" or not, then the word just has no meaning apart from the results of that test.

Autism is thought to be a lifelong condition. Early intervention is also thought to result in better functioning later in life. So there is a push to diagnose autism early, and immediately begin treatment. The debate exists because some parents were told their kids had autism and were pushed into expensive, time-consuming treatments, but it later turned out they had a language delay or a language disorder. This raises the questions as to whether the ADOS is really the best we can do.

If there's a "push" for early intervention for kids with speech or communication delays not for diagnosing autism. Early intervention methods are often the same because many kids don't have a diagnosis.

Mom of a language child - of course there is a push for early intervention. Speech therapy will not cure a child with a langage disorder. Nor should one go in expecting it. Nor will it make a child higher functioning like ABA is supposed to do for a child with autism. BUT, it will give your child the tools they need so when they are ready, they will be successful, especially with receptive language. The language comes in its own time but the stuff they work on is important so your child has it in their memory bank to draw from when they are ready to talk. I don't think speech therapy was helpful before age 3-3.5 but it was helpful in getting my child ready and understanding the routine and expectations.

You basically only have ABA, Speech, OT, PT (and depending on if you want to include art, horse and other therapies most of us don't have financial access to). So, in that sense they are the same, but how they are used is different. ABA was a huge waste of time for my child. He loved the provider but she didn't really understand language development and we didn't have any other issues outside speech so it wasn't helpful. But, I know other kids who do have autism and it was extremely helpful.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I don't even understand this debate. Autism isn't a disease or disorder with a specific known cause, like tuberculosis or Down's. It's a word doctors have decided to use to describe people who present with a particular set of characteristics and limitations. If objective observers perceive those characteristics and limitations then you "have" autism, by definition, no matter how or why you got there. And because there are different underlying mechanisms causing different people to fit that profile, there will be some people who meet the autism criteria today and do not a year from now, and others who will meet them forever. The ADOS can't be "flawed" because there isn't some other, more objective or accurate perspective to critique it from. If the medical powers that be want to declare that test the definitive measure of whether you have "autism" or not, then the word just has no meaning apart from the results of that test.

Autism is thought to be a lifelong condition. Early intervention is also thought to result in better functioning later in life. So there is a push to diagnose autism early, and immediately begin treatment. The debate exists because some parents were told their kids had autism and were pushed into expensive, time-consuming treatments, but it later turned out they had a language delay or a language disorder. This raises the questions as to whether the ADOS is really the best we can do.

If there's a "push" for early intervention for kids with speech or communication delays not for diagnosing autism. Early intervention methods are often the same because many kids don't have a diagnosis.

If you don't have a diagnosis, then most insurances won't pay for treatment.

+1, only a very select few will pay under a language disorder. If you use public early intervention there is not as much of a need for diagnosis, but if you only do private services you do need a diagnosis to justify services. A lot of people assume early intervention only means public services but not all of us use the public services, especially when we have insurance that will cover it.

[Anonymous]

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.

[Anonymous]

Anonymous wrote:I don't even understand this debate. Autism isn't a disease or disorder with a specific known cause, like tuberculosis or Down's. It's a word doctors have decided to use to describe people who present with a particular set of characteristics and limitations. If objective observers perceive those characteristics and limitations then you "have" autism, by definition, no matter how or why you got there. And because there are different underlying mechanisms causing different people to fit that profile, there will be some people who meet the autism criteria today and do not a year from now, and others who will meet them forever. The ADOS can't be "flawed" because there isn't some other, more objective or accurate perspective to critique it from. If the medical powers that be want to declare that test the definitive measure of whether you have "autism" or not, then the word just has no meaning apart from the results of that test.

If a child outgrows the symptoms in a year or few years, they were probably misdiagnosed. It can and is flawed but we have no comparison or something better to test with. It is a subjective test based off the individual who administers it. You can go to 10 different providers and get 10 different opinions. Children also present differently to different people. My child will not interact at all with his developmental ped. I have no idea why. But, he interacts no issue with everyone else. So, we get a very flawed evaluation due to child's behavior.

[Anonymous]

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.

[Anonymous]

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.

Once it is in your medical files, it cannot be removed. We have that situation. Only one doc said autism at 2, everyone else says no. I don't even think that doc believes it autism but it cannot be removed (electronic files). So, it will stay forever. There is a harm if child wants to do a profession where it excludes impairments. It really depends on the situation. If you go to a lot of random doctors without electronic records, it may not be a big deal. Its not always that simple with technology now.

[Anonymous]

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.

[Anonymous]

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.

[Anonymous]

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.

It also shows how easy it can be for some to get the diagnosis.

[Anonymous]

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.

[Anonymous]

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.