Is ASD a useful label or is it we don’t know we will lump it under an umbrella term?

[Anonymous]

Anonymous wrote:

Anonymous wrote:Many of the terms we use to describe disabilities describe a wide variety of symptoms. I'm a special ed teacher, I've got several kids with a CP diagnosis on my caseload. Some have high tone (spasticity) some have very low tone, some have tone that fluctuates. Some have problems with every muscle in their body, one has problems with only one hand. Some also have other conditions like cortical vision impairment, intellectual disability, seizure disorder or autism, and some don't. Some need constant adult support and highly specialized technology like an eye gaze communication devices and a power chair with tilt in space feature, and some travel independently in the community and only need a few minor pieces of technology like the keyboard on their iPhone set for one handed typing.

Having the CP diagnosis is helpful, because it helps them gain eligibility for special ed services, helps connect them to the right doctors and therapists, and communicates to new professionals what it isn't (e.g. while a kid with CP and a kid with JIA both may have stiffness and limited range of motion, they require very different treatments. So, if a kid with stiffness and limited range of motion comes into the ER, knowing that they have a CP diagnosis can help you decide whether to call for a rheumatology consult).

But that doesn't mean that knowing that a kid has CP tells you what they need, or how to treat. It just tells you where to start that search. ASD is similar.

I mean, this is not really a clarifying comment. In fact, CP is divided into many subcategories (spastic, ataxic, athetoid). I think what I and others are saying is that ASD is now just a big umbrella, and doesn't really seem that helpful when totally different kids have the same diagnosis.

And ASD in the DSM is divided into categories too, both in terms of support needs, and whether it does or doesn't come with things such as ID or a speech impairment.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:NP. We get your argument but you don't seem to be getting PP's argument. That child could also easily have been a brilliant NT child without ASD.

You are awfully confident you can arm chair diagnose anyone.

Like I said, it's a real example for someone who already was diagnosed, I have seen more than once, and also know his mother. I did not do an armchair diagnosis, but it was pretty easy to see, non-professional that I am.

My point though is that psychiatric diagnoses are real things even if we don't understand all the neurology behind them yet amd our diagnostic tools are not perfect. There's a common thread running through each diagnosis and the symptom lists are based on that.

There has been a 40-year push to make psychiatric diagnoses more standardized and evidence-based. This push has largely been successful and we continue to improve. There is much less subjectivity and better treatments than there used to be. It's not anywhere near the rigor we can achieve with physical illnesses, but that is no reason to blow off the entire field, which has helped millions of people and saved lives.

No. Psychiatric conditions are real things. Pyschiatric diagnoses are not.

I applaud your ability to split hairs.

I agree with the PP here.

Mental health disorders are absolutely real things. They can be devastating.

And it's important that we are able to develop terms to describe them, and to help people connect with solutions. But most conditions in mental health are continuum disorders meaning that they kind of bleed into each other.

My kid has severe debilitating anxiety that leads to, among other things, school refusal. There is no question that he has a real disorder, and needs real treatment, or that his symptoms are real. But does he have GAD, or separation anxiety, or a phobia of school or a panic disorder? Which term describes him best? Well, that depends on who sees him, and when they see him, and what symptoms he describes that day, or what boxes he checks on their forms. A good psychiatrist or therapist will know to look for treatments that fit him, not just a code on a billing sheet. Luckily, since many of the conditions overlap, it's not surprising that many of the treatments overlap too, so he can be treated consistently, even if his Dr. keeps changing what billing code they use.

So, his condition is real. The terms we use to describe it (the diagnoses) are artificial divisions created to meet the needs of the medical profession and the insurance industry.

Yes it's true they all bleed into each other, but that doesn't mean it's completely arbitrary. ADHD can sometimes look like anxiety, but the treatments are totally different. GAD, panic disorder and separation anxiety can overlap, but they are also distinct diagnoses or, if you prefer, conditions. My kid has ASD, ADHD and GAD, but definitely does not have panic disorder or separation anxiety. In our case, it doesn't change from day to day or doctor to doctor.

If you get diagnosed with the condition of high blood pressure, which is arbitrarily defined as BP higher than 140/90, nobody has any problem with the arbitrary cutoff or argues about whether it's a diagnosis or a condition.

But when it comes to ASD, people do in fact question whether it is "real" or not. Or as in the case of one of the PP's above, feel qualified to question whether a kid she never met has any problem at all.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:NP. We get your argument but you don't seem to be getting PP's argument. That child could also easily have been a brilliant NT child without ASD.

You are awfully confident you can arm chair diagnose anyone.

Like I said, it's a real example for someone who already was diagnosed, I have seen more than once, and also know his mother. I did not do an armchair diagnosis, but it was pretty easy to see, non-professional that I am.

My point though is that psychiatric diagnoses are real things even if we don't understand all the neurology behind them yet amd our diagnostic tools are not perfect. There's a common thread running through each diagnosis and the symptom lists are based on that.

There has been a 40-year push to make psychiatric diagnoses more standardized and evidence-based. This push has largely been successful and we continue to improve. There is much less subjectivity and better treatments than there used to be. It's not anywhere near the rigor we can achieve with physical illnesses, but that is no reason to blow off the entire field, which has helped millions of people and saved lives.

No. Psychiatric conditions are real things. Pyschiatric diagnoses are not.

I applaud your ability to split hairs.

I agree with the PP here.

Mental health disorders are absolutely real things. They can be devastating.

And it's important that we are able to develop terms to describe them, and to help people connect with solutions. But most conditions in mental health are continuum disorders meaning that they kind of bleed into each other.

My kid has severe debilitating anxiety that leads to, among other things, school refusal. There is no question that he has a real disorder, and needs real treatment, or that his symptoms are real. But does he have GAD, or separation anxiety, or a phobia of school or a panic disorder? Which term describes him best? Well, that depends on who sees him, and when they see him, and what symptoms he describes that day, or what boxes he checks on their forms. A good psychiatrist or therapist will know to look for treatments that fit him, not just a code on a billing sheet. Luckily, since many of the conditions overlap, it's not surprising that many of the treatments overlap too, so he can be treated consistently, even if his Dr. keeps changing what billing code they use.

So, his condition is real. The terms we use to describe it (the diagnoses) are artificial divisions created to meet the needs of the medical profession and the insurance industry.

Yes it's true they all bleed into each other, but that doesn't mean it's completely arbitrary. ADHD can sometimes look like anxiety, but the treatments are totally different. GAD, panic disorder and separation anxiety can overlap, but they are also distinct diagnoses or, if you prefer, conditions. My kid has ASD, ADHD and GAD, but definitely does not have panic disorder or separation anxiety. In our case, it doesn't change from day to day or doctor to doctor.

If you get diagnosed with the condition of high blood pressure, which is arbitrarily defined as BP higher than 140/90, nobody has any problem with the arbitrary cutoff or argues about whether it's a diagnosis or a condition.

But when it comes to ASD, people do in fact question whether it is "real" or not. Or as in the case of one of the PP's above, feel qualified to question whether a kid she never met has any problem at all.

With Blood Pressure, there is a clear method of checking and diagnosing. ASD is a subjective checklist done by others and its easily skewed if one wants it to be. It also discredits the kids who are moderately to severely impacted with kids mixed in with very minor things or just a bit quirky. When you say ASD, many just assume very high functioning and quirky when the true ASD (or at least for me) are those far more impacted.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:NP. We get your argument but you don't seem to be getting PP's argument. That child could also easily have been a brilliant NT child without ASD.

You are awfully confident you can arm chair diagnose anyone.

Like I said, it's a real example for someone who already was diagnosed, I have seen more than once, and also know his mother. I did not do an armchair diagnosis, but it was pretty easy to see, non-professional that I am.

My point though is that psychiatric diagnoses are real things even if we don't understand all the neurology behind them yet amd our diagnostic tools are not perfect. There's a common thread running through each diagnosis and the symptom lists are based on that.

There has been a 40-year push to make psychiatric diagnoses more standardized and evidence-based. This push has largely been successful and we continue to improve. There is much less subjectivity and better treatments than there used to be. It's not anywhere near the rigor we can achieve with physical illnesses, but that is no reason to blow off the entire field, which has helped millions of people and saved lives.

No. Psychiatric conditions are real things. Pyschiatric diagnoses are not.

I applaud your ability to split hairs.

I agree with the PP here.

Mental health disorders are absolutely real things. They can be devastating.

And it's important that we are able to develop terms to describe them, and to help people connect with solutions. But most conditions in mental health are continuum disorders meaning that they kind of bleed into each other.

My kid has severe debilitating anxiety that leads to, among other things, school refusal. There is no question that he has a real disorder, and needs real treatment, or that his symptoms are real. But does he have GAD, or separation anxiety, or a phobia of school or a panic disorder? Which term describes him best? Well, that depends on who sees him, and when they see him, and what symptoms he describes that day, or what boxes he checks on their forms. A good psychiatrist or therapist will know to look for treatments that fit him, not just a code on a billing sheet. Luckily, since many of the conditions overlap, it's not surprising that many of the treatments overlap too, so he can be treated consistently, even if his Dr. keeps changing what billing code they use.

So, his condition is real. The terms we use to describe it (the diagnoses) are artificial divisions created to meet the needs of the medical profession and the insurance industry.

Yes it's true they all bleed into each other, but that doesn't mean it's completely arbitrary. ADHD can sometimes look like anxiety, but the treatments are totally different. GAD, panic disorder and separation anxiety can overlap, but they are also distinct diagnoses or, if you prefer, conditions. My kid has ASD, ADHD and GAD, but definitely does not have panic disorder or separation anxiety. In our case, it doesn't change from day to day or doctor to doctor.

If you get diagnosed with the condition of high blood pressure, which is arbitrarily defined as BP higher than 140/90, nobody has any problem with the arbitrary cutoff or argues about whether it's a diagnosis or a condition.

But when it comes to ASD, people do in fact question whether it is "real" or not. Or as in the case of one of the PP's above, feel qualified to question whether a kid she never met has any problem at all.

With Blood Pressure, there is a clear method of checking and diagnosing. ASD is a subjective checklist done by others and its easily skewed if one wants it to be. It also discredits the kids who are moderately to severely impacted with kids mixed in with very minor things or just a bit quirky. When you say ASD, many just assume very high functioning and quirky when the true ASD (or at least for me) are those far more impacted.

Leo Kanner, one of the first to identify autism in 1943 insisted for his entire career that autism was rare and always very severe. He dominated the field and brushed aside all evidence that there were milder forms and that it wasn't rare. As a result millions of children were misdiagnosed or just written off and never got the help they needed. This tragic error was only realized in the late 70s and early 1980's and it took us another 20 more years to learn just how many children were missed.

My kid is not "a bit quirky." I can only wish that were so. Her ASD is just as "true" as anyone else's which also does not "discredit" any other child's problem.

Your assumptions are based on an 80-year old medical error and you might as well start smoking because some doctors back then thought it was good for you.

[Anonymous]

I dunno, I have a child like OP's. It feels very subjective to me. DS8 has ADHD, sensory issues, and lots of delays due to prematurity and low birth weight. Or was it ASD all along? Ped, dev ped, neuropsych all say no; psych says maybe; school insists yes. I could make a case either way, but it doesn't feel clear cut and never has.

We will do another neuropsych in the next year, and I am struggling because I really want to find a place that will objectively evaluate, because at this point, I want a definitive answer. And everyone seems to think that's crazy too.

Yes, at the end of the day, your kid is your kid and you support whatever needs they have—but I don't blame anyone for questioning the process. I expect it will continue to evolve.

[Anonymous]

Anonymous wrote:I dunno, I have a child like OP's. It feels very subjective to me. DS8 has ADHD, sensory issues, and lots of delays due to prematurity and low birth weight. Or was it ASD all along? Ped, dev ped, neuropsych all say no; psych says maybe; school insists yes. I could make a case either way, but it doesn't feel clear cut and never has.

We will do another neuropsych in the next year, and I am struggling because I really want to find a place that will objectively evaluate, because at this point, I want a definitive answer. And everyone seems to think that's crazy too.

Yes, at the end of the day, your kid is your kid and you support whatever needs they have—but I don't blame anyone for questioning the process. I expect it will continue to evolve.

Yes there can be borderline cases, and we had some disagreements among professionals as to whether my kid has ASD or not. Even after a neuropsych said no, many others still said yes. Neuropsych did not do an ADOS, which is the best test we have for autism. That was a mistake.

Best practice is to use a team approach of people experienced with ASD and including an ADOS. A lot of the confusion comes from people getting diagnoses without using best practices. We ended up going to David Black who is very experienced and he gave us the ASD diagnosis. We showed his report to other professionals to see what they thought. My kid also has ADHD, which can overlap with ASD, and we had some detailed discussions with another professional as to how to tell the difference between an ADHD behavior vs. ASD.

We did found the ASD designation useful. When talking to new therapists, it's a lot easier to say your kid has ASD than to give a laundry list of problems that end up sounding like ASD but supposedly aren't. Also, it became easier to select professionals. The ones experienced in ASD understand my child better than the ones who aren't.

[Anonymous]

Anonymous wrote:

Anonymous wrote:I dunno, I have a child like OP's. It feels very subjective to me. DS8 has ADHD, sensory issues, and lots of delays due to prematurity and low birth weight. Or was it ASD all along? Ped, dev ped, neuropsych all say no; psych says maybe; school insists yes. I could make a case either way, but it doesn't feel clear cut and never has.

We will do another neuropsych in the next year, and I am struggling because I really want to find a place that will objectively evaluate, because at this point, I want a definitive answer. And everyone seems to think that's crazy too.

Yes, at the end of the day, your kid is your kid and you support whatever needs they have—but I don't blame anyone for questioning the process. I expect it will continue to evolve.

Yes there can be borderline cases, and we had some disagreements among professionals as to whether my kid has ASD or not. Even after a neuropsych said no, many others still said yes. Neuropsych did not do an ADOS, which is the best test we have for autism. That was a mistake.

Best practice is to use a team approach of people experienced with ASD and including an ADOS. A lot of the confusion comes from people getting diagnoses without using best practices. We ended up going to David Black who is very experienced and he gave us the ASD diagnosis. We showed his report to other professionals to see what they thought. My kid also has ADHD, which can overlap with ASD, and we had some detailed discussions with another professional as to how to tell the difference between an ADHD behavior vs. ASD.

We did found the ASD designation useful. When talking to new therapists, it's a lot easier to say your kid has ASD than to give a laundry list of problems that end up sounding like ASD but supposedly aren't. Also, it became easier to select professionals. The ones experienced in ASD understand my child better than the ones who aren't.

Has anyone had Dr. Black NOT give an ASD diagnosis?

[Anonymous]

When Kanner died and was no longer able to keep the definition meaningful it collapsed into a catchall

[Anonymous]

With Blood Pressure, there is a clear method of checking and diagnosing. ASD is a subjective checklist done by others and its easily skewed if one wants it to be. It also discredits the kids who are moderately to severely impacted with kids mixed in with very minor things or just a bit quirky. When you say ASD, many just assume very high functioning and quirky when the true ASD (or at least for me) are those far more impacted.

Yes, it’s a spectrum and yes, understanding of what ASD is continues to evolve. I don’t see how that “discredits” anyone. My child is level 2 and clearly not just “quirky”. If anything, these sort of debates sound to me like parents of less impacted kids who want to emphasize how much better off their child is than mine. And maybe they are right, but I still find it hurtful.

[Anonymous]

Anonymous wrote:

With Blood Pressure, there is a clear method of checking and diagnosing. ASD is a subjective checklist done by others and its easily skewed if one wants it to be. It also discredits the kids who are moderately to severely impacted with kids mixed in with very minor things or just a bit quirky. When you say ASD, many just assume very high functioning and quirky when the true ASD (or at least for me) are those far more impacted.

Yes, it’s a spectrum and yes, understanding of what ASD is continues to evolve. I don’t see how that “discredits” anyone. My child is level 2 and clearly not just “quirky”. If anything, these sort of debates sound to me like parents of less impacted kids who want to emphasize how much better off their child is than mine. And maybe they are right, but I still find it hurtful.

Or, your kid has ASD, theirs is misdiagnosed or so mild the diagnosis really isn't appropriate. There are clear cases of ASD, but I question so many of the new high functioning where the concerns as the kids get are so mild. ASD cannot be cured. Kids can get more functioning with services and parental help but if a child is cured they are misdiagnosed, especially if it was an early diagnosis.

[Anonymous]

Anonymous wrote:When Kanner died and was no longer able to keep the definition meaningful it collapsed into a catchall

He kept the definition so restricted that kids were being diagnosed with childhood schizophrenia and mental retardation instead. Meanwhile desperate parents were being blamed for being "refrigerator moms."

[Anonymous]

Anonymous wrote:

Anonymous wrote:

With Blood Pressure, there is a clear method of checking and diagnosing. ASD is a subjective checklist done by others and its easily skewed if one wants it to be. It also discredits the kids who are moderately to severely impacted with kids mixed in with very minor things or just a bit quirky. When you say ASD, many just assume very high functioning and quirky when the true ASD (or at least for me) are those far more impacted.

Yes, it’s a spectrum and yes, understanding of what ASD is continues to evolve. I don’t see how that “discredits” anyone. My child is level 2 and clearly not just “quirky”. If anything, these sort of debates sound to me like parents of less impacted kids who want to emphasize how much better off their child is than mine. And maybe they are right, but I still find it hurtful.

Or, your kid has ASD, theirs is misdiagnosed or so mild the diagnosis really isn't appropriate. There are clear cases of ASD, but I question so many of the new high functioning where the concerns as the kids get are so mild. ASD cannot be cured. Kids can get more functioning with services and parental help but if a child is cured they are misdiagnosed, especially if it was an early diagnosis.

Or maybe kids you've never met have a condition you have no training or experience with.

[Anonymous]

Anonymous wrote:I dunno, I have a child like OP's. It feels very subjective to me. DS8 has ADHD, sensory issues, and lots of delays due to prematurity and low birth weight. Or was it ASD all along? Ped, dev ped, neuropsych all say no; psych says maybe; school insists yes. I could make a case either way, but it doesn't feel clear cut and never has.

We will do another neuropsych in the next year, and I am struggling because I really want to find a place that will objectively evaluate, because at this point, I want a definitive answer. And everyone seems to think that's crazy too.

Yes, at the end of the day, your kid is your kid and you support whatever needs they have—but I don't blame anyone for questioning the process. I expect it will continue to evolve.

They generally don't look at biological factors or have an alternative diagnosis/explanation. Everything just gets lumped together. I would not consider that ASD. I'd consider that prematurity and what happens with that.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

With Blood Pressure, there is a clear method of checking and diagnosing. ASD is a subjective checklist done by others and its easily skewed if one wants it to be. It also discredits the kids who are moderately to severely impacted with kids mixed in with very minor things or just a bit quirky. When you say ASD, many just assume very high functioning and quirky when the true ASD (or at least for me) are those far more impacted.

Yes, it’s a spectrum and yes, understanding of what ASD is continues to evolve. I don’t see how that “discredits” anyone. My child is level 2 and clearly not just “quirky”. If anything, these sort of debates sound to me like parents of less impacted kids who want to emphasize how much better off their child is than mine. And maybe they are right, but I still find it hurtful.

Or, your kid has ASD, theirs is misdiagnosed or so mild the diagnosis really isn't appropriate. There are clear cases of ASD, but I question so many of the new high functioning where the concerns as the kids get are so mild. ASD cannot be cured. Kids can get more functioning with services and parental help but if a child is cured they are misdiagnosed, especially if it was an early diagnosis.

Or maybe kids you've never met have a condition you have no training or experience with.

Some of us do have professional training and experience in it. Some of us have it personally too. You may not, but do not assume it about everyone. That is how I knew what was going on with my child, which is why I got help early on and mine is thriving.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

With Blood Pressure, there is a clear method of checking and diagnosing. ASD is a subjective checklist done by others and its easily skewed if one wants it to be. It also discredits the kids who are moderately to severely impacted with kids mixed in with very minor things or just a bit quirky. When you say ASD, many just assume very high functioning and quirky when the true ASD (or at least for me) are those far more impacted.

Yes, it’s a spectrum and yes, understanding of what ASD is continues to evolve. I don’t see how that “discredits” anyone. My child is level 2 and clearly not just “quirky”. If anything, these sort of debates sound to me like parents of less impacted kids who want to emphasize how much better off their child is than mine. And maybe they are right, but I still find it hurtful.

Or, your kid has ASD, theirs is misdiagnosed or so mild the diagnosis really isn't appropriate. There are clear cases of ASD, but I question so many of the new high functioning where the concerns as the kids get are so mild. ASD cannot be cured. Kids can get more functioning with services and parental help but if a child is cured they are misdiagnosed, especially if it was an early diagnosis.

Or maybe kids you've never met have a condition you have no training or experience with.

Some of us do have professional training and experience in it. Some of us have it personally too. You may not, but do not assume it about everyone. That is how I knew what was going on with my child, which is why I got help early on and mine is thriving.

Okay, so you knew enough to diagnose your own child. That still doesn't qualify someone to make judgments about other children you've never met, claiming that their concerns are "mild." Even if you've met them, you may not know what that kid is dealing with in daily life. My kid is considered high functioning, so the concerns are "mild" only compared to lower functioning kids, but she is nowhere near NT. My kid has improved with help, but nobody speaks of a "cure." The most they talk about is that as an adult she may be able to function well enough to be independent. That's not a cure, that's just learning enough skills to "pass." And I don't even know if we will get that.