Anonymous
Post 04/11/2015 11:40     Subject: Autism and Overdiagnosis: Rampant, in psychologist's opinion
If ASD parents want to post about stigma their child has faced, I am very sympathetic and would be interested in hearing about their experiences. What is grating is the posters who say their children are repeatedly mis-diagnosed with ASD, and then bring up, repeatedly, the lifelong stigma they believe kids with ASD face. Who's perpetuating stigma here? I don't want kids to be misdiagnosed, and if a kid doesn't have autism, that is great! But when these threads become about how autism equals lifelong stigma and only the Cameratas can tell the difference and give the one true diagnosis, I just think: ok, they're in denial.

My son has ASD (Aspergers). We've never even been offered ABA, much less forced into hours of it. I WISH people were trying to give us hours of services.

Anonymous
Post 04/11/2015 11:23     Subject: Autism and Overdiagnosis: Rampant, in psychologist's opinion
Anonymous wrote:
Anonymous wrote:
Anonymous wrote:
Anonymous wrote:The OP's statements were very offensive bc there are a lot of children who have been diagnosed properly. And no one wants to hear OP talk about the lifetime stigma and limitations our ASD children face. That was pretty shitty in my opinion. I don't think of my child as having limitations. I think I have to work hard to help him reach his potential.

Sure, talk all about other potential diagnoses... I'm sure there are children who have been improperly diagnosed.


You are missing the point entirely. This wasn't to minimize the fact many kids are autistic and are getting proper diagnosis. Everyone is very supportive of kids getting proper diagnosis and the help they need. The point is about those of our kids who have other developmental delays that initially can look like autism but are not. Our kids are forced into therapies by doctors, schools, etc. that are not appropriate. When as parents we decline (or try then decline) we get reprimanded that we are not making the best choices for our children, etc. Our kids are forced into hours of ABA when it isn't that they aren't trying, but they can't understand what is being said, due to receptive and other issues. No amount of ABA could help my child understand me asking him to go get his shoes till his receptive language came in. ABA is fantastic for autistic kids. Given the cost of ABA, it should be given for kids who need it and not forced on kids who don't need it. It isn't for speech delayed kids. There is far more of a focus on autism now than speech delays and the different kind of delays. We need more specialized diagnosis.

Bottomline is there is a stigma with the autism diagnosis. No one wants it for their kids and it is painful to go through. We were rejected (well, not rejected except one which worked out in our favor as we found a better one but the looks and staff being unfriendly was rejection enough) from many preschools because of it (even though it wasn't autism nor did my child have any of the significant behaviors). My child gets treated very different by most (not all) doctors. Its hard when the first thing they said after looking at your child's medical records before seeing him is oh, he has autism and they treat him differently till they realize the diagnosis is off and then I get the endless questions and told something isn't right with the diagnosis. The impact of a diagnosis that is not correct is huge. It needs to be talked about and kids need to be treated in a way that people understand that they can grow and change and the labels given to them does not define them.

If you aren't happy about the topic - over diagnosis, you read the headline and skip the topic rather than dismiss what others are going through. That's like us telling you your child isn't autistic. There are lots of topics about this because there are many of us with wrong diagnosis trying to figure out what is the best approach for our kids to make them the most successful. You can't make the best choices for your child if the professionals are not giving you the proper diagnosis and best practices.


Your response is quite defensive and as someone who worked in the school system I can tell you there was more of a stigma with MERLD than autism because so many of the kids we saw with MERLD were struggling so much in every area including social. Occasionally we saw a child with MERLD with mild issues, but we were so used to seeing our most impaired kids get the MERLD dx that our first thought before meeting the child was whether the mainstream teacher could be effective even with pull out or pull in supports.


How old were these kids? Because most of the kids I know have grown out of their MERLD largely by third grade. And I know dozens.


And, this is why the experts like Dr. Camarata tell us to keep our kids out of the public school. My child is in more academic preschool (yes, the kind with worksheets) and he needs no extra supports. At the beginning of the year, he needed a bit of extra help but now he's fine. He's at the top of his group with reading and math comes very easily to him, especially their teaching style. My child was very severe, and has now dropped to mild.
Anonymous
Post 04/11/2015 11:21     Subject: Autism and Overdiagnosis: Rampant, in psychologist's opinion
Anonymous wrote: Autistic kids can have some empathy and be social, and even have pretend play, but upon further examination you see social sills can be odd and pretend play is not as well developed as those of NT peers.

A lot of kids with MERLD have atypical social skills as well, but when compared to HFA, the language issues seem more debilitating with MERLD, but like HFA intensive intervention helps a lot. Also, while kids with HFA often have academic areas that are unusually strong, I have not seen that with MERLD. It's a shame insurance doesn't recognize MERLD enough because it really is quite impairing without the right help.


Not sure which MERLD kids you are looking at but many I know including mine were early readers and much stronger in academics than many other kids. My kid read at 3.5, long before he was talking. Its very common for MERLD kids without anything else going on to be strong in academics and very bright. My child is a bit behind in handwriting and coloring but coloring is lack of interest rather than ability.
Anonymous
Post 04/11/2015 11:19     Subject: Autism and Overdiagnosis: Rampant, in psychologist's opinion
Anonymous wrote:
Anonymous wrote:
Anonymous wrote:The OP's statements were very offensive bc there are a lot of children who have been diagnosed properly. And no one wants to hear OP talk about the lifetime stigma and limitations our ASD children face. That was pretty shitty in my opinion. I don't think of my child as having limitations. I think I have to work hard to help him reach his potential.

Sure, talk all about other potential diagnoses... I'm sure there are children who have been improperly diagnosed.


You are missing the point entirely. This wasn't to minimize the fact many kids are autistic and are getting proper diagnosis. Everyone is very supportive of kids getting proper diagnosis and the help they need. The point is about those of our kids who have other developmental delays that initially can look like autism but are not. Our kids are forced into therapies by doctors, schools, etc. that are not appropriate. When as parents we decline (or try then decline) we get reprimanded that we are not making the best choices for our children, etc. Our kids are forced into hours of ABA when it isn't that they aren't trying, but they can't understand what is being said, due to receptive and other issues. No amount of ABA could help my child understand me asking him to go get his shoes till his receptive language came in. ABA is fantastic for autistic kids. Given the cost of ABA, it should be given for kids who need it and not forced on kids who don't need it. It isn't for speech delayed kids. There is far more of a focus on autism now than speech delays and the different kind of delays. We need more specialized diagnosis.

Bottomline is there is a stigma with the autism diagnosis. No one wants it for their kids and it is painful to go through. We were rejected (well, not rejected except one which worked out in our favor as we found a better one but the looks and staff being unfriendly was rejection enough) from many preschools because of it (even though it wasn't autism nor did my child have any of the significant behaviors). My child gets treated very different by most (not all) doctors. Its hard when the first thing they said after looking at your child's medical records before seeing him is oh, he has autism and they treat him differently till they realize the diagnosis is off and then I get the endless questions and told something isn't right with the diagnosis. The impact of a diagnosis that is not correct is huge. It needs to be talked about and kids need to be treated in a way that people understand that they can grow and change and the labels given to them does not define them.

If you aren't happy about the topic - over diagnosis, you read the headline and skip the topic rather than dismiss what others are going through. That's like us telling you your child isn't autistic. There are lots of topics about this because there are many of us with wrong diagnosis trying to figure out what is the best approach for our kids to make them the most successful. You can't make the best choices for your child if the professionals are not giving you the proper diagnosis and best practices.


Your response is quite defensive and as someone who worked in the school system I can tell you there was more of a stigma with MERLD than autism because so many of the kids we saw with MERLD were struggling so much in every area including social. Occasionally we saw a child with MERLD with mild issues, but we were so used to seeing our most impaired kids get the MERLD dx that our first thought before meeting the child was whether the mainstream teacher could be effective even with pull out or pull in supports.


How old were these kids? Because most of the kids I know have grown out of their MERLD largely by third grade. And I know dozens.
Anonymous
Post 04/11/2015 11:15     Subject: Autism and Overdiagnosis: Rampant, in psychologist's opinion
Anonymous wrote:
Anonymous wrote:The OP's statements were very offensive bc there are a lot of children who have been diagnosed properly. And no one wants to hear OP talk about the lifetime stigma and limitations our ASD children face. That was pretty shitty in my opinion. I don't think of my child as having limitations. I think I have to work hard to help him reach his potential.

Sure, talk all about other potential diagnoses... I'm sure there are children who have been improperly diagnosed.


You are missing the point entirely. This wasn't to minimize the fact many kids are autistic and are getting proper diagnosis. Everyone is very supportive of kids getting proper diagnosis and the help they need. The point is about those of our kids who have other developmental delays that initially can look like autism but are not. Our kids are forced into therapies by doctors, schools, etc. that are not appropriate. When as parents we decline (or try then decline) we get reprimanded that we are not making the best choices for our children, etc. Our kids are forced into hours of ABA when it isn't that they aren't trying, but they can't understand what is being said, due to receptive and other issues. No amount of ABA could help my child understand me asking him to go get his shoes till his receptive language came in. ABA is fantastic for autistic kids. Given the cost of ABA, it should be given for kids who need it and not forced on kids who don't need it. It isn't for speech delayed kids. There is far more of a focus on autism now than speech delays and the different kind of delays. We need more specialized diagnosis.

Bottomline is there is a stigma with the autism diagnosis. No one wants it for their kids and it is painful to go through. We were rejected (well, not rejected except one which worked out in our favor as we found a better one but the looks and staff being unfriendly was rejection enough) from many preschools because of it (even though it wasn't autism nor did my child have any of the significant behaviors). My child gets treated very different by most (not all) doctors. Its hard when the first thing they said after looking at your child's medical records before seeing him is oh, he has autism and they treat him differently till they realize the diagnosis is off and then I get the endless questions and told something isn't right with the diagnosis. The impact of a diagnosis that is not correct is huge. It needs to be talked about and kids need to be treated in a way that people understand that they can grow and change and the labels given to them does not define them.

If you aren't happy about the topic - over diagnosis, you read the headline and skip the topic rather than dismiss what others are going through. That's like us telling you your child isn't autistic. There are lots of topics about this because there are many of us with wrong diagnosis trying to figure out what is the best approach for our kids to make them the most successful. You can't make the best choices for your child if the professionals are not giving you the proper diagnosis and best practices.


Your response is quite defensive and as someone who worked in the school system I can tell you there was more of a stigma with MERLD than autism because so many of the kids we saw with MERLD were struggling so much in every area including social. Occasionally we saw a child with MERLD with mild issues, but we were so used to seeing our most impaired kids get the MERLD dx that our first thought before meeting the child was whether the mainstream teacher could be effective even with pull out or pull in supports.
Anonymous
Post 04/11/2015 11:07     Subject: Autism and Overdiagnosis: Rampant, in psychologist's opinion
Autistic kids can have some empathy and be social, and even have pretend play, but upon further examination you see social sills can be odd and pretend play is not as well developed as those of NT peers.

A lot of kids with MERLD have atypical social skills as well, but when compared to HFA, the language issues seem more debilitating with MERLD, but like HFA intensive intervention helps a lot. Also, while kids with HFA often have academic areas that are unusually strong, I have not seen that with MERLD. It's a shame insurance doesn't recognize MERLD enough because it really is quite impairing without the right help.
Anonymous
Post 04/11/2015 10:53     Subject: Autism and Overdiagnosis: Rampant, in psychologist's opinion
Anonymous wrote:
Anonymous wrote:OP, thank you for this. Someone in my extended family is dealing with a surprise diagnosis about her son. (IMO--which I know doesn't matter, but just for purposes of responding to your post--the kid is NT, just a boy and slower to develop his speech.)

It's worth getting a second opinion when your kid is concerned.


Tell them to focus on speech therapy. If it isn't autism, it will tease itself between 4-6, when the kids start to speak. Basics, even eye contact, will come when the receptive and expressive language comes. Kids can't be social well if they don't have speech or understanding of speech.


Ok. It's very bizarre that there is this diagnosis. The kid (who is young!) looks you in the eye and follows directions and everything. His speech is garbled (like gibberish) but he clearly has the cadence, and seems to have no social issues. It's as if you are talking to a kid in English, and he understands you, but responds in a language you don't understand. That may be something, but I don't think it's autism. (but I don't have expertise in SN)
Anonymous
Post 04/11/2015 10:49     Subject: Autism and Overdiagnosis: Rampant, in psychologist's opinion
Anonymous wrote:The OP's statements were very offensive bc there are a lot of children who have been diagnosed properly. And no one wants to hear OP talk about the lifetime stigma and limitations our ASD children face. That was pretty shitty in my opinion. I don't think of my child as having limitations. I think I have to work hard to help him reach his potential.

Sure, talk all about other potential diagnoses... I'm sure there are children who have been improperly diagnosed.


You are missing the point entirely. This wasn't to minimize the fact many kids are autistic and are getting proper diagnosis. Everyone is very supportive of kids getting proper diagnosis and the help they need. The point is about those of our kids who have other developmental delays that initially can look like autism but are not. Our kids are forced into therapies by doctors, schools, etc. that are not appropriate. When as parents we decline (or try then decline) we get reprimanded that we are not making the best choices for our children, etc. Our kids are forced into hours of ABA when it isn't that they aren't trying, but they can't understand what is being said, due to receptive and other issues. No amount of ABA could help my child understand me asking him to go get his shoes till his receptive language came in. ABA is fantastic for autistic kids. Given the cost of ABA, it should be given for kids who need it and not forced on kids who don't need it. It isn't for speech delayed kids. There is far more of a focus on autism now than speech delays and the different kind of delays. We need more specialized diagnosis.

Bottomline is there is a stigma with the autism diagnosis. No one wants it for their kids and it is painful to go through. We were rejected (well, not rejected except one which worked out in our favor as we found a better one but the looks and staff being unfriendly was rejection enough) from many preschools because of it (even though it wasn't autism nor did my child have any of the significant behaviors). My child gets treated very different by most (not all) doctors. Its hard when the first thing they said after looking at your child's medical records before seeing him is oh, he has autism and they treat him differently till they realize the diagnosis is off and then I get the endless questions and told something isn't right with the diagnosis. The impact of a diagnosis that is not correct is huge. It needs to be talked about and kids need to be treated in a way that people understand that they can grow and change and the labels given to them does not define them.

If you aren't happy about the topic - over diagnosis, you read the headline and skip the topic rather than dismiss what others are going through. That's like us telling you your child isn't autistic. There are lots of topics about this because there are many of us with wrong diagnosis trying to figure out what is the best approach for our kids to make them the most successful. You can't make the best choices for your child if the professionals are not giving you the proper diagnosis and best practices.
Anonymous
Post 04/11/2015 10:31     Subject: Autism and Overdiagnosis: Rampant, in psychologist's opinion
Anonymous wrote:OP, thank you for this. Someone in my extended family is dealing with a surprise diagnosis about her son. (IMO--which I know doesn't matter, but just for purposes of responding to your post--the kid is NT, just a boy and slower to develop his speech.)

It's worth getting a second opinion when your kid is concerned.


Tell them to focus on speech therapy. If it isn't autism, it will tease itself between 4-6, when the kids start to speak. Basics, even eye contact, will come when the receptive and expressive language comes. Kids can't be social well if they don't have speech or understanding of speech.
Anonymous
Post 04/11/2015 10:30     Subject: Re:Autism and Overdiagnosis: Rampant, in psychologist's opinion
Anonymous wrote:Getting insurance coverage shouldn't be the reason you want an autism diagnosis for your child. I have autism and it's hell. It's no fun. It's forever. I wish I had an easier diagnosis, one that isn't as permanent. I agree that autism is highly over diagnosed these days. I agree many children diagnosed with autism these days don't actually have autism but autism like symptoms that could be addressed without the autism diagnosis. Properly diagnosing autism is NOT easy. Not every psychologist is an expert in autism. I'd always get experts opinion when it comes to diagnosing my child with autism.

And every parent with a child should be HAPPY to hear "No, it's not autism." Period.


The problem is so many people claim they are the expert, when they aren't. Many of us have gone through several evaluations and every one tells us something different (well, in our case, only one did). No one is getting a diagnosis of autism for insurance purposes. BUT, insurance will generally only cover therapies in less they are really good with an autism diagnosis. I have tried to get ours removed knowing I will risk losing therapy and our developmental ped refuses saying it is based off of history (of course many diagnosis can look similar when kids are little so his 30 minute evaluation should not define a child for the rest of their life).

If my child had autism, he has autism and we'd deal with it the same way we are dealing with his developmental delays. But, the main difference is the approach - ABA. ABA for speech delayed kids does not work and can often do more harm than good, especially with kids who have receptive delays.

You are right, diagnosis is not easy and professionals need better training on all the issues, but most only get a brief few minute training and go by the DSM.
Anonymous
Post 04/11/2015 10:03     Subject: Autism and Overdiagnosis: Rampant, in psychologist's opinion
OP, thank you for this. Someone in my extended family is dealing with a surprise diagnosis about her son. (IMO--which I know doesn't matter, but just for purposes of responding to your post--the kid is NT, just a boy and slower to develop his speech.)

It's worth getting a second opinion when your kid is concerned.
Anonymous
Post 04/11/2015 09:35     Subject: Autism and Overdiagnosis: Rampant, in psychologist's opinion
Anonymous wrote:The OP's statements were very offensive bc there are a lot of children who have been diagnosed properly. And no one wants to hear OP talk about the lifetime stigma and limitations our ASD children face. That was pretty shitty in my opinion. I don't think of my child as having limitations. I think I have to work hard to help him reach his potential.

Sure, talk all about other potential diagnoses... I'm sure there are children who have been improperly diagnosed.


The quotes were from a clinical psychologist who specializes in diagnosing, NOT the OP, who was just pointing out the other side of the autism diagnosis flaws.

Anonymous
Post 04/11/2015 09:19     Subject: Autism and Overdiagnosis: Rampant, in psychologist's opinion
The OP's statements were very offensive bc there are a lot of children who have been diagnosed properly. And no one wants to hear OP talk about the lifetime stigma and limitations our ASD children face. That was pretty shitty in my opinion. I don't think of my child as having limitations. I think I have to work hard to help him reach his potential.

Sure, talk all about other potential diagnoses... I'm sure there are children who have been improperly diagnosed.
Anonymous
Post 04/11/2015 08:59     Subject: Re:Autism and Overdiagnosis: Rampant, in psychologist's opinion
Anonymous wrote:Getting insurance coverage shouldn't be the reason you want an autism diagnosis for your child. I have autism and it's hell. It's no fun. It's forever. I wish I had an easier diagnosis, one that isn't as permanent. I agree that autism is highly over diagnosed these days. I agree many children diagnosed with autism these days don't actually have autism but autism like symptoms that could be addressed without the autism diagnosis. Properly diagnosing autism is NOT easy. Not every psychologist is an expert in autism. I'd always get experts opinion when it comes to diagnosing my child with autism.

And every parent with a child should be HAPPY to hear "No, it's not autism." Period.


Thanks for this perspective. We have several moms on here who claim their children are autistic, but then say their children have few autistic symptoms and that the diagnosis is no big deal, and that's always confounding to me.
Anonymous
Post 04/11/2015 07:17     Subject: Re:Autism and Overdiagnosis: Rampant, in psychologist's opinion
Getting insurance coverage shouldn't be the reason you want an autism diagnosis for your child. I have autism and it's hell. It's no fun. It's forever. I wish I had an easier diagnosis, one that isn't as permanent. I agree that autism is highly over diagnosed these days. I agree many children diagnosed with autism these days don't actually have autism but autism like symptoms that could be addressed without the autism diagnosis. Properly diagnosing autism is NOT easy. Not every psychologist is an expert in autism. I'd always get experts opinion when it comes to diagnosing my child with autism.

And every parent with a child should be HAPPY to hear "No, it's not autism." Period.