Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:So OP does not have a child diagnosed with autism but feels the need to tell the rest of us who do have a child diagnosed with autism that our kid is probably misdiagnosed and will suffer a lifetime of stigma from having ASD.

Gee, thanks.

Actually, the OP has a child the schools tried their damnedest to label with "educational autism." The six medical professionals who saw him all gave him a language disorder diagnosis and said it was not autism.

There are only 13 education categories under which someone can get an IEP so the school is not looking for an exact diagnosis but the category that best matches the types of services the child needs. So the OP is getting the services needed under educational "autism" but still feels the need to complain to parents whose kids have an autism diagnosis about how autism is over diagnosed which makes absolutely no sense. An educational autism diagnosis does not equal a medical diagnosis and if you have so much issue with how their kid does not have autism but got categorized in their IEP then adk for another education label:

http://www.understandingspecialeducation.com/13-categories-of-special-education.html

Although I don't know why you would waste your time about semantics when you are getting the services you need. Sigh.

I am the OP. I refused the educational autism label because it was inaccurate. The school threatened, they bribed, they harassed us to try and get us to take the autism label -- and ultimately gave DS all the services under the speech and language label, where a MERLD child belongs.

Good for you! So what are you complaining about?

These labels carry throughout kids school careers so potentially it can impact future academics and even college admissions. It is a big deal. Look at the school person who posted before saying how she treats all Merld assuming the worst in their functioning when that may not be the case.

I would worry more about the kid's grades, SAT scores, etc rather than their educational label in regards to their future college admissions and careers.

You worry about all those things too but the diagnosis and IEP greatly impact the classes one takes and opportunities given. With all the comments about why people follow the advice of the Camarata's is because of the educational impact and sadly they advocate keeping kids out of public in a private or homeschooling because of all of it. We are taking their advice as I am too tired to fight IEPS.

Yes, this is our experience. We've been fighting the good fight with the schools, but it's such an uphill battle and takes so much energy, it's starting not to feel worth it.

Anonymous wrote:

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)

Gosh, you are that nightmare relative we all have... The one who knows better than the parents and the experts and insists on saying "he'll grow out of it". Please, butt out!
FWIW, the boy sounds just like my son, who seemed to have no social issues and talked gibberish at first. A year later, it's so much clearer to others, not just us, that the diagnosis was correct.

Anonymous wrote:

Anonymous wrote:I don't know what this person is talking about. My dad is autistic and he's led a successful life as a short order cook, had 12 kids and has a a hilarious Instagram.

Wow, can you do an AMA thread? Autistic short order cook instgraming dad, 11 siblings. Or write a mkvie script. Sounds like an interesting childood

+1!

Anonymous wrote:

Anonymous wrote:I think the trend in "overdiagnosing" or labeling kids on the mild end of the Autism spectrum has truly hurt the kids with "classic autism". I hate to think that it has been reduced to a zero sum game that there is a limited supply of money available and to feel jealous not more money goes to the kids and families with severe needs. It is hard to see so many posters talk about their kid or family member with Autism who is so social, gifted, academically advanced (ex. the poster who wrote my father has autism and went on to have a great, high paying job, a loving wife, and kids, and is humorous; or my kid is in a gifted program and has all of these supports) when you have a family member with Autism who can only say a few words and will need care the rest of his life. How can these people be lumped together? Sorry, it hasn't been a good day today.

I agree with this. I spoke with a researcher who said even government-funded clinical studies were starting to be skewed, because there's a tendency to only want to research HFA.

Sorry it's been a rough day!

When the DSM-5 came out there was a lot of controversy among people with Asperger's who did not want to be put in the same group with people who had intellectual disabilities who could not speak, etc. Even with all their objections, I agree that the higher end of the spectrum got a lot more out of being put into the spectrum since it qualified them for services: Notably states like California and Wisconsin did not easily grant IEPs to students diagnosed with Asperger's before they were subsumed into ASD.

But it's hard to see how funding is a zero sum game especially when it comes to schools since students on both ends of the spectrum require very different supports and services. Kids on the mild end of the spectrum probably require as much supports as kids with ADHD if that.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:She is complaining about the stigma of having an ASD education label. To parents of kids with ASD who have an IEP under autism. The lifelong stigma it will carry and how autism in general is overdiagnosed. Like it is a choice....

If that's how you took it, that's too bad. What I'm actually saying is parents having their kid evaluated need to do their homework: select an evaluator who knows what they are doing, who has an impeccable track record and training. Got to a research hospital, a university, somewhere where they know what they are doing. Don't accept the word of every Tom, Dick & Harry evaluator -- because they might not have any idea what they are doing. Hint: If they don't know what a differential diagnosis is, they have no business diagnosing anybody with anything.

if you could be any less patronizing...

This poster doesn't realize that in some situations once a diagnosis is made and it is part of the official record, no outside evaluations count in less it is removed by the original evaluator. We got an outside eval, brought it to the developmental ped who agreed but said it was still autism based on history and too bad. So, because its an electronic record, it is seen by everyone. Differential diagnosis is a very fine art. Most developmental peds and psychologists are generalists in many areas and not true specialists in any one in less they choose it. So, they are very skewed and may not be able to tell the subtle differences between receptive language issues and autism. I can get 20 more evaluations by the top folks and if this one person doesn't remove the diagnosis we are stuck.

And, we've tried studies that people have posted on here and every one we get referred back to a major hospital, usually Children's who told us our child was not delayed when it was clear he was. It isn't that simple or easy to get into studies.

If we were in a different health care setting, we could easily ignore the original diagnosis and use the current ones but that's not the medical plan we have nor can we get another one given the cost.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:So OP does not have a child diagnosed with autism but feels the need to tell the rest of us who do have a child diagnosed with autism that our kid is probably misdiagnosed and will suffer a lifetime of stigma from having ASD.

Gee, thanks.

Actually, the OP has a child the schools tried their damnedest to label with "educational autism." The six medical professionals who saw him all gave him a language disorder diagnosis and said it was not autism.

There are only 13 education categories under which someone can get an IEP so the school is not looking for an exact diagnosis but the category that best matches the types of services the child needs. So the OP is getting the services needed under educational "autism" but still feels the need to complain to parents whose kids have an autism diagnosis about how autism is over diagnosed which makes absolutely no sense. An educational autism diagnosis does not equal a medical diagnosis and if you have so much issue with how their kid does not have autism but got categorized in their IEP then adk for another education label:

http://www.understandingspecialeducation.com/13-categories-of-special-education.html

Although I don't know why you would waste your time about semantics when you are getting the services you need. Sigh.

I am the OP. I refused the educational autism label because it was inaccurate. The school threatened, they bribed, they harassed us to try and get us to take the autism label -- and ultimately gave DS all the services under the speech and language label, where a MERLD child belongs.

Good for you! So what are you complaining about?

These labels carry throughout kids school careers so potentially it can impact future academics and even college admissions. It is a big deal. Look at the school person who posted before saying how she treats all Merld assuming the worst in their functioning when that may not be the case.

I would worry more about the kid's grades, SAT scores, etc rather than their educational label in regards to their future college admissions and careers.

You worry about all those things too but the diagnosis and IEP greatly impact the classes one takes and opportunities given. With all the comments about why people follow the advice of the Camarata's is because of the educational impact and sadly they advocate keeping kids out of public in a private or homeschooling because of all of it. We are taking their advice as I am too tired to fight IEPS.

Anonymous wrote:

Anonymous wrote:what actually helps people is addressing g the issues they have with therapies and interventions and supports. Knowing the causes and being able to re categorize the spectrum does nothing for individuals with ASD.

Bullshit. You can't provide the most effective treatments-and preventions-without understanding etiology. That's why the DSM does individuals with various disorders, including autism, such a grave disservice. The cancer community would never stand for this kind of diagnostic carelessness and disregard for etiology.

+! nicely said. Basically right now we have aba, speech, ot and pt. There are a few more out there like floor time and others. They are very generic and the go to for many things.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:ASD is not a disease like cancer.

So you are arguing for less specificity with ASD? Just lump 'em into one big group?

Good science demands specificity. I've never heard anyone argue otherwise. The truth is, today we are calling a multitude of things autism.

Yeah. At the dev ped the other day for my kid that clearly has issues - many - but clearly not asd, no less problematic probably, and probably no less dehabilitating, I saw several classically autistic kids. They look a certain way have a certain posture and a certain voice and a certain way. It's clearly genetic. I think we are calling degrees of intellectual disability all autism. Not popular. But it's true. My kid is cognitively low functioning, there's no autism. But we've been forced that way like ten times. It's fruatrating because: expertise, prognosis, specialities. Why does this need to be explained? There's no "it's just cancer." Come on.

I think genetics is a part of it and for some kids, it is the reason why. I also don't think there is one reason for it and it can be a birth injury, drug/alcohol exposure, prenatal environmental, etc. We just don't know and they are looking at a set of criteria vs. actual tests. We did do genetic testing and it didn't come up with anything but genetic testing is so new right now and while it is good for some things, it cannot diagnose everything.

I also think you are absolutely right that we now call intellectual disabilities autism when those should be separate (or co-existing). My husband and I watched a documentary on autism and many of the kids seemed to fit in that category but it was called autism.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:ASD is not a disease like cancer.

So you are arguing for less specificity with ASD? Just lump 'em into one big group?

Good science demands specificity. I've never heard anyone argue otherwise. The truth is, today we are calling a multitude of things autism.

Yeah. At the dev ped the other day for my kid that clearly has issues - many - but clearly not asd, no less problematic probably, and probably no less dehabilitating, I saw several classically autistic kids. They look a certain way have a certain posture and a certain voice and a certain way. It's clearly genetic. I think we are calling degrees of intellectual disability all autism. Not popular. But it's true. My kid is cognitively low functioning, there's no autism. But we've been forced that way like ten times. It's fruatrating because: expertise, prognosis, specialities. Why does this need to be explained? There's no "it's just cancer." Come on.

I think it goes beyond even that. We are calling all developmental differences autism. I see it clearly in the special needs groups we're a part of.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:ASD is not a disease like cancer.

So you are arguing for less specificity with ASD? Just lump 'em into one big group?

Good science demands specificity. I've never heard anyone argue otherwise. The truth is, today we are calling a multitude of things autism.

If you don't know the difference between a disease like cancer and a developmental disorder such as autism there is no hope for you. And it's been widely acknowledged that there are different types of autism with different and multivariable causes:

https://www.autismspeaks.org/what-autism

You are really clueless.

Anonymous wrote:

Anonymous wrote:ASD is not a disease like cancer.

So you are arguing for less specificity with ASD? Just lump 'em into one big group?

Good science demands specificity. I've never heard anyone argue otherwise. The truth is, today we are calling a multitude of things autism.

Yeah. At the dev ped the other day for my kid that clearly has issues - many - but clearly not asd, no less problematic probably, and probably no less dehabilitating, I saw several classically autistic kids. They look a certain way have a certain posture and a certain voice and a certain way. It's clearly genetic. I think we are calling degrees of intellectual disability all autism. Not popular. But it's true. My kid is cognitively low functioning, there's no autism. But we've been forced that way like ten times. It's fruatrating because: expertise, prognosis, specialities. Why does this need to be explained? There's no "it's just cancer." Come on.

Anonymous wrote:

Anonymous wrote:ASD is not a disease like cancer.

So you are arguing for less specificity with ASD? Just lump 'em into one big group?

Good science demands specificity. I've never heard anyone argue otherwise. The truth is, today we are calling a multitude of things autism.

If you don't know the difference between a disease like cancer and a developmental disorder such as autism there is no hope for you. And it's been widely acknowledged that there are different types of autism with different and multivariable causes:

https://www.autismspeaks.org/what-autism

Anonymous wrote:ASD is not a disease like cancer.

So you are arguing for less specificity with ASD? Just lump 'em into one big group?

Good science demands specificity. I've never heard anyone argue otherwise. The truth is, today we are calling a multitude of things autism.

ASD is not a disease like cancer.

Anonymous wrote:what actually helps people is addressing g the issues they have with therapies and interventions and supports. Knowing the causes and being able to re categorize the spectrum does nothing for individuals with ASD.

Bullshit. You can't provide the most effective treatments-and preventions-without understanding etiology. That's why the DSM does individuals with various disorders, including autism, such a grave disservice. The cancer community would never stand for this kind of diagnostic carelessness and disregard for etiology.