Reminder about the purpose of the Kids with Special Needs Forum

[Anonymous]

I have seen a similar dynamic from dyslexia posters with people whose children have been assessed with auditory processing disorder or phonological processing disorder. And it's not helpful when it's tinged with the poster's own biases.

As an example of, let's say a poster posts something about a recent assessment of phonological processing disorder and questions about tutoring, next steps, etc.:

Helpful: By the way, you might want to consider talking with your pediatrician about a neuropsych assessment, because public schools often avoid a dyslexia diagnosis to avoid providing services.

Not helpful: Why haven't you paid for a full neuropsych exam already? Your kid does not have phonological processing disorder, she's dyslexic. Why are you avoiding a dyslexia diagnosis? Why don't you admit your kid has dyslexia?

These answers are largely saying the same thing, but the first is useful, the second does nothing useful.

[Anonymous]

jsteele wrote:

Anonymous wrote:
(And moreover, it's absolutely a thing that people avoid autism evaluations out of fear of stigma. It took me three years to do it for my own kid. Aggressively reacting to the suggestion of a screening is absolutely related to autism stigma. And for those of us with autistic kids ... yes, this is hard to see.)

You are just going to have to accept that assuming everyone is doing this and repeatedly hammering your position is not helpful and is contributing to making this forum less useful than it used to be.

What the real issue with this poster here? It sounds like you are trying to save people from your experiences, and that's great that you are here to help but how you are going about it is not helpful.

What are you looking for from the rest of us? It sounds like you had a very difficult experience getting help for your child or you choose to wait and feel bad about it and want to save other families and kids from going through it but being aggressive and attacking other parents and more importantly, attacking their kids is the absolute worst way to go about it.

If you just look at ASD, you may be missing something else. Kids need compressive medical and developmental evaluations because ASD is a label for people with similar traits based off checklists and observations. Many of us have done a lot more than discussed on here from vision, hearing and speech evaluations to genetic testing and MRI's/Xrays, etc. and more for rule out as there are other disorders that look like ASD that are not ASD and any good evaluation is going to include all those things, which you never point out.

[Anonymous]

Anonymous wrote:

jsteele wrote:

Anonymous wrote:
(And moreover, it's absolutely a thing that people avoid autism evaluations out of fear of stigma. It took me three years to do it for my own kid. Aggressively reacting to the suggestion of a screening is absolutely related to autism stigma. And for those of us with autistic kids ... yes, this is hard to see.)

You are just going to have to accept that assuming everyone is doing this and repeatedly hammering your position is not helpful and is contributing to making this forum less useful than it used to be.

What the real issue with this poster here? It sounds like you are trying to save people from your experiences, and that's great that you are here to help but how you are going about it is not helpful.

What are you looking for from the rest of us? It sounds like you had a very difficult experience getting help for your child or you choose to wait and feel bad about it and want to save other families and kids from going through it but being aggressive and attacking other parents and more importantly, attacking their kids is the absolute worst way to go about it.

If you just look at ASD, you may be missing something else. Kids need compressive medical and developmental evaluations because ASD is a label for people with similar traits based off checklists and observations. Many of us have done a lot more than discussed on here from vision, hearing and speech evaluations to genetic testing and MRI's/Xrays, etc. and more for rule out as there are other disorders that look like ASD that are not ASD and any good evaluation is going to include all those things, which you never point out.

I never said “It’s only ASD.” you’re projecting your own issues. If you got your kid a full autism evaluation and they said no autism, then that’s the end of the story. But on an anonymous, general forum, when people post asking for help and describing autism symptoms ... people are going to ask or suggest an autism diagnosis. If you act offended by that, then it becomes a matter of your own prejudices.

[Anonymous]

NP. I have repeatedly asked specific questions on this forum where i prefaced by saying both a developmental pediatrician evaluation, psychologist evaluation and full neuropsych evaluation all ruled out autism. The questions were NOT looking for a diagnosis -- they were things like "tell me about what anxiety looks like with ADHD" or "how long before your kid returns to baseline after coming off adhd meds' and i described things I was seeing with my kid. I STILL had posters tell me I needed to get another evaluation because my kid clearly has autism.

I cannot believe the "seek an autism diagnosis" person is STILL defending themselves despite a ton of parents AND the forum moderator telling them that position is not welcome here.

[Anonymous]

Anonymous wrote:NP. I have repeatedly asked specific questions on this forum where i prefaced by saying both a developmental pediatrician evaluation, psychologist evaluation and full neuropsych evaluation all ruled out autism. The questions were NOT looking for a diagnosis -- they were things like "tell me about what anxiety looks like with ADHD" or "how long before your kid returns to baseline after coming off adhd meds' and i described things I was seeing with my kid. I STILL had posters tell me I needed to get another evaluation because my kid clearly has autism.

I cannot believe the "seek an autism diagnosis" person is STILL defending themselves despite a ton of parents AND the forum moderator telling them that position is not welcome here.

Exactly. Same with me. ASD becomes the answer for everything, and you can't get answers to other things you want/need to know.

[Anonymous]

Anonymous wrote:NP. I have repeatedly asked specific questions on this forum where i prefaced by saying both a developmental pediatrician evaluation, psychologist evaluation and full neuropsych evaluation all ruled out autism. The questions were NOT looking for a diagnosis -- they were things like "tell me about what anxiety looks like with ADHD" or "how long before your kid returns to baseline after coming off adhd meds' and i described things I was seeing with my kid. I STILL had posters tell me I needed to get another evaluation because my kid clearly has autism.

I cannot believe the "seek an autism diagnosis" person is STILL defending themselves despite a ton of parents AND the forum moderator telling them that position is not welcome here.

to be clear, Jeff never said “get evaluated for autism” is unacceptable here. that would be absurd. what he said (and I agree with) is not to diagnosis-lawyer, be aggressive, or repetitive about it. Posters that make clear that autism is off the table should be respected. But many, many people post here before they know what’s going on, and it’s perfectly acceptable to talk about autism in that context ... and inapproriate to respond in a derailing manner about how “everything is autism” and “autism is diagnosed by checklist.” Or eyeroll emojis.

[Anonymous]

Anonymous wrote:

Anonymous wrote:NP. I have repeatedly asked specific questions on this forum where i prefaced by saying both a developmental pediatrician evaluation, psychologist evaluation and full neuropsych evaluation all ruled out autism. The questions were NOT looking for a diagnosis -- they were things like "tell me about what anxiety looks like with ADHD" or "how long before your kid returns to baseline after coming off adhd meds' and i described things I was seeing with my kid. I STILL had posters tell me I needed to get another evaluation because my kid clearly has autism.

I cannot believe the "seek an autism diagnosis" person is STILL defending themselves despite a ton of parents AND the forum moderator telling them that position is not welcome here.

Exactly. Same with me. ASD becomes the answer for everything, and you can't get answers to other things you want/need to know.

1 in 86 kids is diagnosed with autism. Many, many people will post here early in that journey before they know what’s going on. They need to be supported with accurate information.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:NP. I have repeatedly asked specific questions on this forum where i prefaced by saying both a developmental pediatrician evaluation, psychologist evaluation and full neuropsych evaluation all ruled out autism. The questions were NOT looking for a diagnosis -- they were things like "tell me about what anxiety looks like with ADHD" or "how long before your kid returns to baseline after coming off adhd meds' and i described things I was seeing with my kid. I STILL had posters tell me I needed to get another evaluation because my kid clearly has autism.

I cannot believe the "seek an autism diagnosis" person is STILL defending themselves despite a ton of parents AND the forum moderator telling them that position is not welcome here.

Exactly. Same with me. ASD becomes the answer for everything, and you can't get answers to other things you want/need to know.

1 in 86 kids is diagnosed with autism. Many, many people will post here early in that journey before they know what’s going on. They need to be supported with accurate information.

Sorry, I mean 1 in 59. So 1 kid in each class, pretty much.

[Anonymous]

For reference, this is what Jeff said:

”Nothing is autism" is simply the other side of the "Everything is autism" coin. Both are obviously wrong (and I'm clearly exaggerating both positions). My point that you should not take the position that another poster's understanding of their child is wrong and attack them for it. There are ways that you can disagree and/or offer more information that are supportive of posters rather than hostile. In some cases, it may simply be better to hold your tongue or start a new thread.”

[Anonymous]

Anonymous wrote:

Anonymous wrote:

jsteele wrote:

Anonymous wrote:
(And moreover, it's absolutely a thing that people avoid autism evaluations out of fear of stigma. It took me three years to do it for my own kid. Aggressively reacting to the suggestion of a screening is absolutely related to autism stigma. And for those of us with autistic kids ... yes, this is hard to see.)

You are just going to have to accept that assuming everyone is doing this and repeatedly hammering your position is not helpful and is contributing to making this forum less useful than it used to be.

That's not what I intend to do. TBH it would be nice if you would also model empathy here. Autism stigma is real.

You may not intend it, but your constant guarding against autism stigma is in fact making DCUM worse. My kid has autism. I didn't see anything wrong with "what the hell's" post. I assume she had the correct assessments and that's the end of it. As Jeff said, repeatedly hammering 'the diagnosis" does derail many threads.

+1

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:NP. I have repeatedly asked specific questions on this forum where i prefaced by saying both a developmental pediatrician evaluation, psychologist evaluation and full neuropsych evaluation all ruled out autism. The questions were NOT looking for a diagnosis -- they were things like "tell me about what anxiety looks like with ADHD" or "how long before your kid returns to baseline after coming off adhd meds' and i described things I was seeing with my kid. I STILL had posters tell me I needed to get another evaluation because my kid clearly has autism.

I cannot believe the "seek an autism diagnosis" person is STILL defending themselves despite a ton of parents AND the forum moderator telling them that position is not welcome here.

Exactly. Same with me. ASD becomes the answer for everything, and you can't get answers to other things you want/need to know.

1 in 86 kids is diagnosed with autism. Many, many people will post here early in that journey before they know what’s going on. They need to be supported with accurate information.

Sorry, I mean 1 in 59. So 1 kid in each class, pretty much.

Where does your child go to school that has 59 kids in a class?

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:NP. I have repeatedly asked specific questions on this forum where i prefaced by saying both a developmental pediatrician evaluation, psychologist evaluation and full neuropsych evaluation all ruled out autism. The questions were NOT looking for a diagnosis -- they were things like "tell me about what anxiety looks like with ADHD" or "how long before your kid returns to baseline after coming off adhd meds' and i described things I was seeing with my kid. I STILL had posters tell me I needed to get another evaluation because my kid clearly has autism.

I cannot believe the "seek an autism diagnosis" person is STILL defending themselves despite a ton of parents AND the forum moderator telling them that position is not welcome here.

Exactly. Same with me. ASD becomes the answer for everything, and you can't get answers to other things you want/need to know.

1 in 86 kids is diagnosed with autism. Many, many people will post here early in that journey before they know what’s going on. They need to be supported with accurate information.

Most of the people I see here posting early in their journey are seeking help, seeing specialists, etc . . . If an ASD diagnosis is right it will come up in that context. It doesn't need to be pushed here. I have a kid who has symptoms of autism, but actually has other issues. In our case there is no doubt that the issue isn't ASD, and what it is isn't "better", it's just a more accurate description of his issues. And sometimes the fact that it's different doesn't matter, because if the symptoms are the the same, the response is the same, and sometimes it absolutely does matter. But I feel like I can't ask a question or make a comment about my kid without providing either a whole bunch of information, which added with other information I've shared here could be identifying, or dealing with being told that it's probably autism and I'm probably in denial.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

jsteele wrote:

Anonymous wrote:
(And moreover, it's absolutely a thing that people avoid autism evaluations out of fear of stigma. It took me three years to do it for my own kid. Aggressively reacting to the suggestion of a screening is absolutely related to autism stigma. And for those of us with autistic kids ... yes, this is hard to see.)

You are just going to have to accept that assuming everyone is doing this and repeatedly hammering your position is not helpful and is contributing to making this forum less useful than it used to be.

What the real issue with this poster here? It sounds like you are trying to save people from your experiences, and that's great that you are here to help but how you are going about it is not helpful.

What are you looking for from the rest of us? It sounds like you had a very difficult experience getting help for your child or you choose to wait and feel bad about it and want to save other families and kids from going through it but being aggressive and attacking other parents and more importantly, attacking their kids is the absolute worst way to go about it.

If you just look at ASD, you may be missing something else. Kids need compressive medical and developmental evaluations because ASD is a label for people with similar traits based off checklists and observations. Many of us have done a lot more than discussed on here from vision, hearing and speech evaluations to genetic testing and MRI's/Xrays, etc. and more for rule out as there are other disorders that look like ASD that are not ASD and any good evaluation is going to include all those things, which you never point out.

I never said “It’s only ASD.” you’re projecting your own issues. If you got your kid a full autism evaluation and they said no autism, then that’s the end of the story. But on an anonymous, general forum, when people post asking for help and describing autism symptoms ... people are going to ask or suggest an autism diagnosis. If you act offended by that, then it becomes a matter of your own prejudices.

You are completely missing the point.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:NP. I have repeatedly asked specific questions on this forum where i prefaced by saying both a developmental pediatrician evaluation, psychologist evaluation and full neuropsych evaluation all ruled out autism. The questions were NOT looking for a diagnosis -- they were things like "tell me about what anxiety looks like with ADHD" or "how long before your kid returns to baseline after coming off adhd meds' and i described things I was seeing with my kid. I STILL had posters tell me I needed to get another evaluation because my kid clearly has autism.

I cannot believe the "seek an autism diagnosis" person is STILL defending themselves despite a ton of parents AND the forum moderator telling them that position is not welcome here.

Exactly. Same with me. ASD becomes the answer for everything, and you can't get answers to other things you want/need to know.

1 in 86 kids is diagnosed with autism. Many, many people will post here early in that journey before they know what’s going on. They need to be supported with accurate information.

Most of the people I see here posting early in their journey are seeking help, seeing specialists, etc . . . If an ASD diagnosis is right it will come up in that context. It doesn't need to be pushed here. I have a kid who has symptoms of autism, but actually has other issues. In our case there is no doubt that the issue isn't ASD, and what it is isn't "better", it's just a more accurate description of his issues. And sometimes the fact that it's different doesn't matter, because if the symptoms are the the same, the response is the same, and sometimes it absolutely does matter. But I feel like I can't ask a question or make a comment about my kid without providing either a whole bunch of information, which added with other information I've shared here could be identifying, or dealing with being told that it's probably autism and I'm probably in denial.

+1

[Anonymous]

Anonymous wrote:

Anonymous wrote:

jsteele wrote:

Anonymous wrote:
(And moreover, it's absolutely a thing that people avoid autism evaluations out of fear of stigma. It took me three years to do it for my own kid. Aggressively reacting to the suggestion of a screening is absolutely related to autism stigma. And for those of us with autistic kids ... yes, this is hard to see.)

You are just going to have to accept that assuming everyone is doing this and repeatedly hammering your position is not helpful and is contributing to making this forum less useful than it used to be.

What the real issue with this poster here? It sounds like you are trying to save people from your experiences, and that's great that you are here to help but how you are going about it is not helpful.

What are you looking for from the rest of us? It sounds like you had a very difficult experience getting help for your child or you choose to wait and feel bad about it and want to save other families and kids from going through it but being aggressive and attacking other parents and more importantly, attacking their kids is the absolute worst way to go about it.

If you just look at ASD, you may be missing something else. Kids need compressive medical and developmental evaluations because ASD is a label for people with similar traits based off checklists and observations. Many of us have done a lot more than discussed on here from vision, hearing and speech evaluations to genetic testing and MRI's/Xrays, etc. and more for rule out as there are other disorders that look like ASD that are not ASD and any good evaluation is going to include all those things, which you never point out.

I never said “It’s only ASD.” you’re projecting your own issues. If you got your kid a full autism evaluation and they said no autism, then that’s the end of the story. But on an anonymous, general forum, when people post asking for help and describing autism symptoms ... people are going to ask or suggest an autism diagnosis. If you act offended by that, then it becomes a matter of your own prejudices.

How can we best meet your needs? You are looking for all of us to say or do something and it seems to be more about your looking for something related to the choices you have made or were mislead by "professionals' on your child's needs. It great you are trying to help others not make the mistakes you made but it would be helpful if you did it in a more positive, helpful and supportive way. A neuropsych is a great tool for many kids. But, it also has its limitations and isn't necessary for all kids.