Reminder about the purpose of the Kids with Special Needs Forum

[Anonymous]

Anonymous wrote:

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

+2

[Anonymous]

Thanks Jeff for all that you do.

I've been personally frustrated by a few people with agendas who always want to deny that conditions like PANDAS or Lyme are even real. My kid has had both and they are all too real, and the denial of them can be dangerous. I always try to respond to parents asking questions about these conditions, having been through them and having learned so much. But when I do I am almost always met with someone who wants to state definitively that these aren't real, which is not just counterproductive but personally invalidating and hurtful after all that we've been through.

I think that's what really gets to me - the invalidation of my own lived and painful experience.

[Anonymous]

Anonymous wrote:

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.

I never said anything about a neuropsych? I raise my story as an example of why it is appropriate to mention autism when a parent asks a question here, in certain cases. Do you think autism should never be suggested?

[Anonymous]

Anonymous wrote:

jsteele wrote:

Anonymous wrote:

Anonymous wrote:When I hear that a kid is in OT and PT and is language delayed, I think the kid probably has cerebral palsy like my kid. Why the hell would I take my kid to an autism appointment?

Why swear? Why so outraged? Unless you think autism has some kind of stigma, then yeah, you shouldn't be offended if someone suggests an autism assessment knowing nothing more than that the child is in OT, PT, language delayed, doesn't seem to be interested in other kids, AND has repetitive behaviors. Generally the posts that elicit suggestions of ASD screenings involve "red flags" of autism, like social skills, melt-downs, repetitive behaviors.

And here we have the perfect example of what I am trying to stop. The original post gets completely ignored and we now have a debate about whether a failure to get an autism evaluation is a sign that autism being stigmatized. Remember that the entire point of the original post was to NOT HAVE THIS DEBATE. The previous poster clearly understands her child's condition. She does not need to be told to get an autism evaluation. Even more, she does not need to be told that she is stigmatizing your child by not doing so.

Jeff, with respect, the "what the hell" poster was in my mind a CLEAR example of someone who is reacting in a derailing manner against the suggestion of autism, not the other way around. It's hard to have this conversation in the abstract, but the main point is: people (including me 4 years ago!) frequently post here with questions exactly like this: "my three year old is having behavioral problems in preschool and is in OT for fine motor skills and likes to jump around in circles, what should I do?" The answer "have you gotten him evaluated for autism at KKI or Childrens?" is a perfectly acceptable answer, if it's phrased correctly.

No, the correct answer is start with your per or developmental per who can refer you for additional testing as needed. You don’t go directly to a diagnosis. You also consider if it is the right preschool fit. Behavioral problems are not necessarily asd.

[Anonymous]

Anonymous wrote:Thanks Jeff for all that you do.

I've been personally frustrated by a few people with agendas who always want to deny that conditions like PANDAS or Lyme are even real. My kid has had both and they are all too real, and the denial of them can be dangerous. I always try to respond to parents asking questions about these conditions, having been through them and having learned so much. But when I do I am almost always met with someone who wants to state definitively that these aren't real, which is not just counterproductive but personally invalidating and hurtful after all that we've been through.

I think that's what really gets to me - the invalidation of my own lived and painful experience.

If you want to post about your personal experience, fine. But the way PANDAS and Lyme come up is that a parent says “is this PANDAS”? and people respond with the very real, very substantial questions about PANDAS and Lyme. Yes this could be done in a more or less derailing way. But it’s not invalidating to you when someone comments to *someone else* about the serious issues surrounding those diagnoses.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

jsteele wrote:

Anonymous wrote:

Anonymous wrote:When I hear that a kid is in OT and PT and is language delayed, I think the kid probably has cerebral palsy like my kid. Why the hell would I take my kid to an autism appointment?

Why swear? Why so outraged? Unless you think autism has some kind of stigma, then yeah, you shouldn't be offended if someone suggests an autism assessment knowing nothing more than that the child is in OT, PT, language delayed, doesn't seem to be interested in other kids, AND has repetitive behaviors. Generally the posts that elicit suggestions of ASD screenings involve "red flags" of autism, like social skills, melt-downs, repetitive behaviors.

And here we have the perfect example of what I am trying to stop. The original post gets completely ignored and we now have a debate about whether a failure to get an autism evaluation is a sign that autism being stigmatized. Remember that the entire point of the original post was to NOT HAVE THIS DEBATE. The previous poster clearly understands her child's condition. She does not need to be told to get an autism evaluation. Even more, she does not need to be told that she is stigmatizing your child by not doing so.

Jeff, with respect, the "what the hell" poster was in my mind a CLEAR example of someone who is reacting in a derailing manner against the suggestion of autism, not the other way around. It's hard to have this conversation in the abstract, but the main point is: people (including me 4 years ago!) frequently post here with questions exactly like this: "my three year old is having behavioral problems in preschool and is in OT for fine motor skills and likes to jump around in circles, what should I do?" The answer "have you gotten him evaluated for autism at KKI or Childrens?" is a perfectly acceptable answer, if it's phrased correctly.

No, the correct answer is start with your per or developmental per who can refer you for additional testing as needed. You don’t go directly to a diagnosis. You also consider if it is the right preschool fit. Behavioral problems are not necessarily asd.

I totally agree - we should have robust discussion about how to best get a kid evaluated, but without acting like autism is a dirty word. PS my kids preschool class was a horrible fit ... because he was autistic! Not mutually exclusive.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

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.

I never said anything about a neuropsych? I raise my story as an example of why it is appropriate to mention autism when a parent asks a question here, in certain cases. Do you think autism should never be suggested?

If a parent asks about asd absolutely but otherwise you tell them to start with a ped or developmental ped or both and depending on their insurance. They should be referring the child for additional testing. If asked, you can discuss what testing is available and make suggestions on who is good but to flat out answer with a neuropsych or ADOS is not ok except specifically what are the best tests are for asd.

There are so many different ways to get a child help. But the help should start with their doctor rather than someone on the internet. There is no right or wrong way. The important thing is the child and family get the help they need and we should be focusing on that which is what brought most of us here. What works for one child may not for another.

This board is great for resources. We found preschools, schools, evaluators, and therapists. We also found out who not to go to, when Jeff can allow it. Hopefully others can benefit too but without all the hostility and name calling. Your way worked great or hopefully is working for your child. My is working well for mine. But, it’s nice to have the resources shared if we, you or anyone else needs something different later on. I would, for example, not known to check NIH for evaluations except when someone shared that. Or, that there were other resources outside the school system or private pay until I read it here.

All the bullying, name calling and I know what is best for your child and my way is the only way is doing far more harm than good as you run off people trying to help or more importantly need help and have no other place to turn. Read some of the attacks. How would you feel if the situation were reversed and someone treated you like that?

And, yes, there are families who deny ASD. There are also families who deny dyslexia, families who deny speech issues and even families who Deny the need for yearly physical exams and things like eye exams or hearing tests. Or, overlook mental health issues that can look very different in kids vs adults, like depression.

All we can do is support others where they are at and hopefully when they are ready or need more they will come back. But to do that, we need this to be a warm and welcoming board they will want to come back to when they are ready. Then, when they say they tried this and that, then the next step is to recommend targeted evaluations, neuropsych, psycho educational or other specialists depending on the need, ability to pay, etc. And, it is ok to get multiple opinions as much of this is educated guesses and not an exact science.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

jsteele wrote:

Anonymous wrote:

Anonymous wrote:When I hear that a kid is in OT and PT and is language delayed, I think the kid probably has cerebral palsy like my kid. Why the hell would I take my kid to an autism appointment?

Why swear? Why so outraged? Unless you think autism has some kind of stigma, then yeah, you shouldn't be offended if someone suggests an autism assessment knowing nothing more than that the child is in OT, PT, language delayed, doesn't seem to be interested in other kids, AND has repetitive behaviors. Generally the posts that elicit suggestions of ASD screenings involve "red flags" of autism, like social skills, melt-downs, repetitive behaviors.

And here we have the perfect example of what I am trying to stop. The original post gets completely ignored and we now have a debate about whether a failure to get an autism evaluation is a sign that autism being stigmatized. Remember that the entire point of the original post was to NOT HAVE THIS DEBATE. The previous poster clearly understands her child's condition. She does not need to be told to get an autism evaluation. Even more, she does not need to be told that she is stigmatizing your child by not doing so.

Jeff, with respect, the "what the hell" poster was in my mind a CLEAR example of someone who is reacting in a derailing manner against the suggestion of autism, not the other way around. It's hard to have this conversation in the abstract, but the main point is: people (including me 4 years ago!) frequently post here with questions exactly like this: "my three year old is having behavioral problems in preschool and is in OT for fine motor skills and likes to jump around in circles, what should I do?" The answer "have you gotten him evaluated for autism at KKI or Childrens?" is a perfectly acceptable answer, if it's phrased correctly.

No, the correct answer is start with your per or developmental per who can refer you for additional testing as needed. You don’t go directly to a diagnosis. You also consider if it is the right preschool fit. Behavioral problems are not necessarily asd.

I totally agree - we should have robust discussion about how to best get a kid evaluated, but without acting like autism is a dirty word. PS my kids preschool class was a horrible fit ... because he was autistic! Not mutually exclusive.

The preschool discussion is another good one for what works and what does not. I toured a lot with my child and surprised at what was going on with kids without SN and it really scared me to think how they would treat one with SN, especially with limited verbal skills. We got very lucky with preschool but it easily could have been your experience.

[Anonymous]

Anonymous wrote:I am likely an offender- although I don’t care about MERLD vs. ASD. The perspective I bring is that if a special education teacher and SN mom. Sometimes I see the school blaming/teacher shaming as a defense mechanism that not only hurts the kid (I see this play out daily!!) and stops the parents from addressing core issues. It’s hard for me to remain objective.
For my part I do try to steer clear on reading others posts, although I do post new topics. There is just a lot of damage done by scared parents who refuse to accept the fact that their kids disability isn’t the schools fault. IMO

I agree. What parents here think schools are a)responsible for and b) capable of doing can be wildly off. I hope I’m helpful but sometimes I chime in when parents are furious at teachers or schools or are just like “what do I put in the IEP” because having deep misconceptions about what teachers do or can do or why they’re doing it breeds distrust in schools that does NOT help these parents or kids. It’s not about being right or winning a fight, I just want people knowing what their rights are or what expectations should be or to explain why things are done the way they are so they can best advocate for their kids without entering an unnecessary battle with schools.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

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.

I never said anything about a neuropsych? I raise my story as an example of why it is appropriate to mention autism when a parent asks a question here, in certain cases. Do you think autism should never be suggested?

Nobody said you xan't mention autism. Nobody. So why do you ask that?.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

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.

I never said anything about a neuropsych? I raise my story as an example of why it is appropriate to mention autism when a parent asks a question here, in certain cases. Do you think autism should never be suggested?

If a parent asks about asd absolutely but otherwise you tell them to start with a ped or developmental ped or both and depending on their insurance. They should be referring the child for additional testing. If asked, you can discuss what testing is available and make suggestions on who is good but to flat out answer with a neuropsych or ADOS is not ok except specifically what are the best tests are for asd.

There are so many different ways to get a child help. But the help should start with their doctor rather than someone on the internet. There is no right or wrong way. The important thing is the child and family get the help they need and we should be focusing on that which is what brought most of us here. What works for one child may not for another.

This board is great for resources. We found preschools, schools, evaluators, and therapists. We also found out who not to go to, when Jeff can allow it. Hopefully others can benefit too but without all the hostility and name calling. Your way worked great or hopefully is working for your child. My is working well for mine. But, it’s nice to have the resources shared if we, you or anyone else needs something different later on. I would, for example, not known to check NIH for evaluations except when someone shared that. Or, that there were other resources outside the school system or private pay until I read it here.

All the bullying, name calling and I know what is best for your child and my way is the only way is doing far more harm than good as you run off people trying to help or more importantly need help and have no other place to turn. Read some of the attacks. How would you feel if the situation were reversed and someone treated you like that?

And, yes, there are families who deny ASD. There are also families who deny dyslexia, families who deny speech issues and even families who Deny the need for yearly physical exams and things like eye exams or hearing tests. Or, overlook mental health issues that can look very different in kids vs adults, like depression.

All we can do is support others where they are at and hopefully when they are ready or need more they will come back. But to do that, we need this to be a warm and welcoming board they will want to come back to when they are ready. Then, when they say they tried this and that, then the next step is to recommend targeted evaluations, neuropsych, psycho educational or other specialists depending on the need, ability to pay, etc. And, it is ok to get multiple opinions as much of this is educated guesses and not an exact science.

I agree with a lot of what you wrote, except for the idea that there needs to be some cone of silence around suggesting autism. This is an anonymous message board where people go for advice. When a parent raises a set of symptoms that include autism red flags, there's absolutely nothing wrong with suggesting an evaluation for autism. It's not warm and unwelcoming to suggest an autism screening.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

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.

I never said anything about a neuropsych? I raise my story as an example of why it is appropriate to mention autism when a parent asks a question here, in certain cases. Do you think autism should never be suggested?

Nobody said you xan't mention autism. Nobody. So why do you ask that?.

I see you're more interested in attacking me (and have apparently turned me into an amalgam of all the posters you find offensive) than you are in actually developing useful moderation standards.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

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.

I never said anything about a neuropsych? I raise my story as an example of why it is appropriate to mention autism when a parent asks a question here, in certain cases. Do you think autism should never be suggested?

Nobody said you xan't mention autism. Nobody. So why do you ask that?.

I see you're more interested in attacking me (and have apparently turned me into an amalgam of all the posters you find offensive) than you are in actually developing useful moderation standards.

I see you are more interested in muddying the waters than in following the moderation standards from the moderator.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

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.

I never said anything about a neuropsych? I raise my story as an example of why it is appropriate to mention autism when a parent asks a question here, in certain cases. Do you think autism should never be suggested?

If a parent asks about asd absolutely but otherwise you tell them to start with a ped or developmental ped or both and depending on their insurance. They should be referring the child for additional testing. If asked, you can discuss what testing is available and make suggestions on who is good but to flat out answer with a neuropsych or ADOS is not ok except specifically what are the best tests are for asd.

There are so many different ways to get a child help. But the help should start with their doctor rather than someone on the internet. There is no right or wrong way. The important thing is the child and family get the help they need and we should be focusing on that which is what brought most of us here. What works for one child may not for another.

This board is great for resources. We found preschools, schools, evaluators, and therapists. We also found out who not to go to, when Jeff can allow it. Hopefully others can benefit too but without all the hostility and name calling. Your way worked great or hopefully is working for your child. My is working well for mine. But, it’s nice to have the resources shared if we, you or anyone else needs something different later on. I would, for example, not known to check NIH for evaluations except when someone shared that. Or, that there were other resources outside the school system or private pay until I read it here.

All the bullying, name calling and I know what is best for your child and my way is the only way is doing far more harm than good as you run off people trying to help or more importantly need help and have no other place to turn. Read some of the attacks. How would you feel if the situation were reversed and someone treated you like that?

And, yes, there are families who deny ASD. There are also families who deny dyslexia, families who deny speech issues and even families who Deny the need for yearly physical exams and things like eye exams or hearing tests. Or, overlook mental health issues that can look very different in kids vs adults, like depression.

All we can do is support others where they are at and hopefully when they are ready or need more they will come back. But to do that, we need this to be a warm and welcoming board they will want to come back to when they are ready. Then, when they say they tried this and that, then the next step is to recommend targeted evaluations, neuropsych, psycho educational or other specialists depending on the need, ability to pay, etc. And, it is ok to get multiple opinions as much of this is educated guesses and not an exact science.

I agree with a lot of what you wrote, except for the idea that there needs to be some cone of silence around suggesting autism. This is an anonymous message board where people go for advice. When a parent raises a set of symptoms that include autism red flags, there's absolutely nothing wrong with suggesting an evaluation for autism. It's not warm and unwelcoming to suggest an autism screening.

There is no cone of silence around autism.

[Anonymous]

^This is exactly the problem. ^