Reminder about the purpose of the Kids with Special Needs Forum

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Bringing it back to the point of this thread: this is a general, anonymous website. So when someone posts a question along the lines of "my child is in OT and PT and seems really anxious and plays with his fingers a lot" .... yes, the response will be "go get an autism assessment." That convo should not derail into "you think everyone has autism you crazy lady!". If someone posts "my child has SPD and keeps on getting kicked out of preschool what should I do?" then yes, people will validly say "SPD is not a disgnosis used by the people your kid needs to be evaluated by." This can all be done without derailing the conversation.

When I see OT and PT, I think DCD, so no, not everything automatically circles to autism. The point of this thread that that we should directly address the concern of the OP, not push our own agenda.

DCD is one of those diagnoses that people seek out to avoid autism. OT and PT plus "seems anxious and is language delayed and does this weird thing with his fingers" = autism assessment needed. If OP states outright "my child has a DCD diagnosis from [reputable place] that I think is correct and I'm not seeking advice along those lines" then yeah, it's not the place to debate it, although people might be interested to hear exactly how they got the DCD diagnosis and what went into that.

[Anonymous]

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?

[Anonymous]

Anonymous wrote:Jeff, I understand and appreciate your prescriptive. I do think it’s hard for many of us to view those discussions objectively. For example, my child does not have autism, but I do see the posters that insist autism is over diagnosed as being very insensitive. They really are contending that those children that have autism are far more impacted than their own children. That’s often not the case at all. Also, it’s not fair to tell someone that they simply accepted an over diagnoses condition. The reason I think these posters need to be responded to is because they make parents struggling with diagnosis and sadness etc. lose years and get caught up and confused by insisting it’s not a bigger condition and going to see the one specialist they approve of. There are hundreds of excellent professionals here in the DMV. Avoiding them in favor of shopping for a preferred diagnosis is a problem. There’s no way around that.

Regardless, I don’t think it’s fair at all to all of the excellent and caring therapists we have worked with to not appreciate that they don’t go by a diagnosis but rather what the child needs.

Exactly. I still don't totally understand my kid's diagnosis and can clearly see how it's something that used to be in the spectrum of normal and has now been moved to the other side, not by anything that's changed in nature, but by changes in how we view mental & developmental issues. I'm extremely aware of overdiagnosis, overtreatment ... as well as the underdiagnosis and undertreatment faced by families less fortunate than ours. But to honestly help your child, you can't take an ideologically driven position that rejects a current professional consensus as a knee-jerk matter; while at the same time being extremely discerning about what & who is going to help your kid. To that end, I wish we had more conversations about ABA, social skills training, etc etc, here, than about diagnoses. Just accept that your kid fits into the current box of autism, and move on to the more important stuff.

[Anonymous]

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.

[jsteele]

Anonymous wrote:Jeff, I understand and appreciate your prescriptive. I do think it’s hard for many of us to view those discussions objectively. For example, my child does not have autism, but I do see the posters that insist autism is over diagnosed as being very insensitive. They really are contending that those children that have autism are far more impacted than their own children. That’s often not the case at all. Also, it’s not fair to tell someone that they simply accepted an over diagnoses condition. The reason I think these posters need to be responded to is because they make parents struggling with diagnosis and sadness etc. lose years and get caught up and confused by insisting it’s not a bigger condition and going to see the one specialist they approve of. There are hundreds of excellent professionals here in the DMV. Avoiding them in favor of shopping for a preferred diagnosis is a problem. There’s no way around that.

Regardless, I don’t think it’s fair at all to all of the excellent and caring therapists we have worked with to not appreciate that they don’t go by a diagnosis but rather what the child needs.

"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.

Edit to add: I forgot to mention, rather than responding to such posters, please use the "report" button and let me handle them. Responding to them only helps hijack the thread.

[jsteele]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Bringing it back to the point of this thread: this is a general, anonymous website. So when someone posts a question along the lines of "my child is in OT and PT and seems really anxious and plays with his fingers a lot" .... yes, the response will be "go get an autism assessment." That convo should not derail into "you think everyone has autism you crazy lady!". If someone posts "my child has SPD and keeps on getting kicked out of preschool what should I do?" then yes, people will validly say "SPD is not a disgnosis used by the people your kid needs to be evaluated by." This can all be done without derailing the conversation.

When I see OT and PT, I think DCD, so no, not everything automatically circles to autism. The point of this thread that that we should directly address the concern of the OP, not push our own agenda.

DCD is one of those diagnoses that people seek out to avoid autism. OT and PT plus "seems anxious and is language delayed and does this weird thing with his fingers" = autism assessment needed. If OP states outright "my child has a DCD diagnosis from [reputable place] that I think is correct and I'm not seeking advice along those lines" then yeah, it's not the place to debate it, although people might be interested to hear exactly how they got the DCD diagnosis and what went into that.

Rather than putting the onus on OP's to correctly draft their posts in order to avoid being told to get an autism evaluation, why not take a bit more care with your own responses? I really dislike this questioning of other's diagnoses. I dislike it even more when it is combined with the assumption that the entire diagnosis is based on an attempt to avoid what you believe is the "correct" diagnosis.

[jsteele]

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.

[Anonymous]

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.

[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.

(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.)

[jsteele]

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.

I agree that answer is acceptable. However, if the poster then provides a response saying that autism has been ruled out for whatever reason, it is not appropriate to accuse them of stigmatizing autism and continue to argue with them. You made the suggestion. If they don't want to take it, that's on them.

[jsteele]

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.

[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.

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

[Anonymous]

THANK YOU!!!!
I have wondered for a few years whether this forum was being trolled. Some of the comments are sooooo judgmental and mean spirited and have nothing to do with the original post. Thank you for stepping in. Thank you soooooo much!!!

[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.

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.

[Anonymous]

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.

You are completely missing the point that poster made. You are explaining all behavior by ASD and if a parent just takes your posts for fact and only looks at ASD they can be missing key things in their child.