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:How old is your child, OP?

When my child was first diagnosed with "high functioning autism" when he was 5, I felt the same as you. I didn't feel comfortable lumping my highly verbal, academically capable child with the picture of autism I had in my head.

Now that my child is older, I can see that he is, indeed autistic. His social communication deficits and his desire to engage in repetitive activities are more obviously restrictive. Yes, he's still very verbal and (sometimes) academically capable, but I can see how it's a difference in degree, not a different thing, from people who are classically autistic.

Can you tell us more PP? How old is your child and when did you start seeing the differences more clearly?
DS12 has trouble with emotional regulation, and sometimes talks too much or too loudly and tends to be in other people's space more than other children his age. He's also very clumsy. On the other hand, he has a wide range of interests from sporty to academic, has a lot of friends and is very social and has good grades.

My child is 12 and his differences were always there but became more apparent around 4th grade. He spends hours in his room engaging in repetitive activities (think spinning wheels on a toy car). He can talk for hours about the how of things (the route he used to get to school, how to engage in his favorite extracurricular) but struggles with the why of things. He's fully mainstreamed in school. He excels in above grade level math but is failing history. He really, really wants friends but doesn't know how to initiate conversations.

From what you've said, I don't see red flags for autism.

[Anonymous]

Anonymous wrote:

Anonymous wrote:I've never heard of a child diagnosed with autism who turned out to be NT. I have heard the opposite many times.

This is about whether ASD is a useful label; not whether NT kids are being mislabled. Research shows up to 37% of kids lose ASD diagnoses. https://www.contemporarypediatrics.com/modern-medicine-feature-articles/lost-asd-diagnosis-now-what A lot of those kids do get ADHD dxs, but this still begs the question of whether we're pathologizing normal variants of personality or not. IMO it really has to do with life outcomes -- if these dx'd kids get jobs, get married, etc, then I think that will be a good argument for over-diagnosis.

There are a lot of variables in that summary and life outcomes are not a good indicator. ASD kids can have good outcomes, NT kids can have bad outcomes. Intervention improves outcomes, but does a very successful intervention mean there was no problem to begin with? In my case, my kid is definitely having problems right now that would be much worse with no intervention.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I've never heard of a child diagnosed with autism who turned out to be NT. I have heard the opposite many times.

This is about whether ASD is a useful label; not whether NT kids are being mislabled. Research shows up to 37% of kids lose ASD diagnoses. https://www.contemporarypediatrics.com/modern-medicine-feature-articles/lost-asd-diagnosis-now-what A lot of those kids do get ADHD dxs, but this still begs the question of whether we're pathologizing normal variants of personality or not. IMO it really has to do with life outcomes -- if these dx'd kids get jobs, get married, etc, then I think that will be a good argument for over-diagnosis.

There are a lot of variables in that summary and life outcomes are not a good indicator. ASD kids can have good outcomes, NT kids can have bad outcomes. Intervention improves outcomes, but does a very successful intervention mean there was no problem to begin with? In my case, my kid is definitely having problems right now that would be much worse with no intervention.

We did years of intervention with great providers but I am not convinced my child would not still have been ok and doing as well as he is with them. However, I wasn't going to risk not doing that the time and regret it later on. I think they helped some but time was really what helped.

[Anonymous]

Anonymous wrote:

Anonymous wrote:OP here. Kiddo is 3.5. Child Find used ASD category. Ped sa

Sorry sent before I was done. Ped said “nah”, neurologist said “nah”, speech therapist said “maybe”. Child find said “ASD”. Taking him to KK in the next month but I don’t know what difference it makes since so far none of the experts seem to agree. I see some flags but these also seem to fit other possible issues MERLD or ADHD or Audio processing disorder or just being 3. I want specific information on what the deficits are, why they are happening and how to address them. ASD just seems so damn broad it doesn’t help me know what to do with it (other than getting insurance and school to cover things).

Many of us have that experience. Child find should not be giving diagnosis. If its MERLD it will tease out later, usually 5-6-7, however most will just say its ASD as they don't get MERLD. Its easier for places like Child Find to lump all these kids together, same services regardless of their need.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Yes it makes sense. It is a very broad spectrum. There are two things to know:
1) All ASD involves social communication deficits. Usually this involves limited or no ability to pick up social cues. A lot of the variability in ASD is from this issue because it's like someone visiting a foreign country where they don't know the language. The visitor will act strangely, but it will look different depending on the customs of their own country.
2) All ASD involves restricted, repetitive behaviors. Narrow interests is classic, but this group includes sensory issues, as they try to confine themselves to seeking or avoiding certain sensations. For example, my kid eats only about 10 things, often refusing foods based on texture alone.

We don't know why those two items go together so often, but we see them together so often, we created the ASD syndrome. A syndrome is an set of symptoms that frequently occur together without an obvious connection.

The third thing to know is that ASD is often comorbid with other disorders. We don't know why this is either. But it accounts for a lot of the variability too. Many have ADHD, itself something of a spectrum. Many have communication disorders, adding a layer of complexity to understanding your AS kid..

I hope this helps.

It actually doesn't make sense, because the DSM is very arbitrary. The standards for ASD (such as repetitive behavior) have changed. You used to not be able to diagnose ASD with anything comorbid, and now you say "ASD is often comorbid." It really is a moving target. ASD is a collection of symptoms, and the DSM criteria are so broad, that there's not really any unifying principal.

The "moving target" has a lot to do with the history of what the DSM is and the personalities of early Autism researchers. The ASD diagnostic criteria are pretty specific even if how individuals express those criteria seem broad. We see similar variance in expression of symptoms across other diagnoses where we know more about the underlying neurology.

No, the ASD criteria are not specific. They are very broad, and in many potential combinations, that there is a lot of possible variety. The "moving target" is due to the inherently subjective nature of all DSM diagnoses -- they're decided by committee based on a collection of symptoms; not through actual differential, physically-based processes (or even treatment approaches.)

Sure, psychiatric diagnosis is both an art and a science. But if somebody is.crying their eyes and talks about suicide, we've got absolutely no trouble figuring out they have depression. Then take a five-year old can give a university-level lecture on beetles but doesn't know why the rest of the world is not interested and suddenly people think we don't know what the problem is.

Neither example is even remotely related to many of our kids. You can have a brilliant 5 year old who is not ASD and that is part of the point of the concern with the term.

Both are real world examples of actual.people with their respective diagnoses. The child is a real child who was not that brilliant but knew an awful lot about insects: restricted interest, and couldn't tell when people were bored or disgusted by his mini-lectures: missed social cues.

Sometimes it's really not that difficult to diagnose these things, lack of blood tests notwithstanding. If you don't recognize classic depression or ASD, then maybe you are not as knowledgeable about how these diagnoses are made as you think.

Yeah, but how do you reconcile a child with poor expressive language, who shuns social interaction and appears aloof and disinterested, with a child who is "socially motivated" (in that he communicates and actively seeks interaction even if odd/awkward), has advanced expressive language skills? Both are labeled ASD, and it doesn't make a ton of sense. All you can really say is "they both react in a non-NT way to social cues." that's not really satisfying.

Well, in terms of how ASD works vs. other type of non-NT social interactions, ASD kids have a poor theory of mind. Theory of mind is "the ability to attribute mental states—beliefs, intents, desires, emotions, knowledge, etc.—to oneself, and to others, and to understand that others have beliefs, desires, intentions, and perspectives that are different from one's own." My high functioning ASD kid has good expressive language but has trouble with this very thing. It's something that the ADOS test looks for directly. A kid with an expressive language disorder only would have good theory of mind but trouble with verbal expression. Therr are ways to test for this, but it's harder to do in very young kids, which accounts for some misdiagnoses.

[Anonymous]

I'm not sure what to think about this subject. My dd is 4.5 yrs old, and has had 'red flags' for autism since she was a year old. She's been in EI and now is in speech/language therapy and OT.

Her current diagnosis is expressive and receptive language impairment (used to be MERLD I believe?), sensory processing disorder, and fine motor skills delay. She is also not at all potty trained...she doesn't know how to play with other kids other than 'chase me'. Some mild flapping and toe walking.

But she's also warm, funny and sweet. She is finally getting a full eval in April-it's been a looonnng wait! I mean, she does seem to fit the profile for an ASD diagnosis. But maybe she's just an anxious, quirky kid with a language delay. I don't know-I hope they do!

[Anonymous]

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.

Very much an arm-chair diagnosis and you may not know all the facts as it is not your child. The tools are basically check lists and are very subjective. They do not have any true tests or really is even have clarity on what ASD is. ADHD years ago was used as the every kid has diagnosis, and now ASD is. Some kids are just off the wall smart. Many of our kids it is something else and rarely do the evaluators take the time to understand each diagnosis beyond what they read or see and just slap on a label and be done with it to collect their check. Many kids get misdiagnosed early on.

You are essentially arguing that you know more about a kid you never met than his own mother.

[Anonymous]

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.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:How old is your child, OP?

When my child was first diagnosed with "high functioning autism" when he was 5, I felt the same as you. I didn't feel comfortable lumping my highly verbal, academically capable child with the picture of autism I had in my head.

Now that my child is older, I can see that he is, indeed autistic. His social communication deficits and his desire to engage in repetitive activities are more obviously restrictive. Yes, he's still very verbal and (sometimes) academically capable, but I can see how it's a difference in degree, not a different thing, from people who are classically autistic.

Can you tell us more PP? How old is your child and when did you start seeing the differences more clearly?
DS12 has trouble with emotional regulation, and sometimes talks too much or too loudly and tends to be in other people's space more than other children his age. He's also very clumsy. On the other hand, he has a wide range of interests from sporty to academic, has a lot of friends and is very social and has good grades.

your child is not autistic.

NP here- the description above fits my child too, and when he was 6 he got an ASD diagnosis from Children’s National. He also has ADHD, dysgraphia and gross and fine motor challenges. He can talk at obnoxious length about many subjects and will switch to a new one if someone appears bored. We are doing social skills groups to help with the theory of mind and emotional regulation. We’ll see where we end up diagnostically. The one benefit of the ASD label is that the school doesn’t fight IEP eligibility. Implementation is a whole different issue.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:How old is your child, OP?

When my child was first diagnosed with "high functioning autism" when he was 5, I felt the same as you. I didn't feel comfortable lumping my highly verbal, academically capable child with the picture of autism I had in my head.

Now that my child is older, I can see that he is, indeed autistic. His social communication deficits and his desire to engage in repetitive activities are more obviously restrictive. Yes, he's still very verbal and (sometimes) academically capable, but I can see how it's a difference in degree, not a different thing, from people who are classically autistic.

Can you tell us more PP? How old is your child and when did you start seeing the differences more clearly?
DS12 has trouble with emotional regulation, and sometimes talks too much or too loudly and tends to be in other people's space more than other children his age. He's also very clumsy. On the other hand, he has a wide range of interests from sporty to academic, has a lot of friends and is very social and has good grades.

your child is not autistic.

NP here- the description above fits my child too, and when he was 6 he got an ASD diagnosis from Children’s National. He also has ADHD, dysgraphia and gross and fine motor challenges. He can talk at obnoxious length about many subjects and will switch to a new one if someone appears bored. We are doing social skills groups to help with the theory of mind and emotional regulation. We’ll see where we end up diagnostically. The one benefit of the ASD label is that the school doesn’t fight IEP eligibility. Implementation is a whole different issue.

well thanks for proving OP's point. If your kid socializes normally yet has an ASD diagnosis, it's very hard to understand.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:How old is your child, OP?

When my child was first diagnosed with "high functioning autism" when he was 5, I felt the same as you. I didn't feel comfortable lumping my highly verbal, academically capable child with the picture of autism I had in my head.

Now that my child is older, I can see that he is, indeed autistic. His social communication deficits and his desire to engage in repetitive activities are more obviously restrictive. Yes, he's still very verbal and (sometimes) academically capable, but I can see how it's a difference in degree, not a different thing, from people who are classically autistic.

Can you tell us more PP? How old is your child and when did you start seeing the differences more clearly?
DS12 has trouble with emotional regulation, and sometimes talks too much or too loudly and tends to be in other people's space more than other children his age. He's also very clumsy. On the other hand, he has a wide range of interests from sporty to academic, has a lot of friends and is very social and has good grades.

your child is not autistic.

NP here- the description above fits my child too, and when he was 6 he got an ASD diagnosis from Children’s National. He also has ADHD, dysgraphia and gross and fine motor challenges. He can talk at obnoxious length about many subjects and will switch to a new one if someone appears bored. We are doing social skills groups to help with the theory of mind and emotional regulation. We’ll see where we end up diagnostically. The one benefit of the ASD label is that the school doesn’t fight IEP eligibility. Implementation is a whole different issue.

well thanks for proving OP's point. If your kid socializes normally yet has an ASD diagnosis, it's very hard to understand.

The bolded is not normal behavior. It may sound from a single sentence description that it is merely quirky behavior, when you actually interact with an ASD kid over time, you often see that it is more than that.

[Anonymous]

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.

[Anonymous]

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.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:How old is your child, OP?

When my child was first diagnosed with "high functioning autism" when he was 5, I felt the same as you. I didn't feel comfortable lumping my highly verbal, academically capable child with the picture of autism I had in my head.

Now that my child is older, I can see that he is, indeed autistic. His social communication deficits and his desire to engage in repetitive activities are more obviously restrictive. Yes, he's still very verbal and (sometimes) academically capable, but I can see how it's a difference in degree, not a different thing, from people who are classically autistic.

Can you tell us more PP? How old is your child and when did you start seeing the differences more clearly?
DS12 has trouble with emotional regulation, and sometimes talks too much or too loudly and tends to be in other people's space more than other children his age. He's also very clumsy. On the other hand, he has a wide range of interests from sporty to academic, has a lot of friends and is very social and has good grades.

your child is not autistic.

NP here- the description above fits my child too, and when he was 6 he got an ASD diagnosis from Children’s National. He also has ADHD, dysgraphia and gross and fine motor challenges. He can talk at obnoxious length about many subjects and will switch to a new one if someone appears bored. We are doing social skills groups to help with the theory of mind and emotional regulation. We’ll see where we end up diagnostically. The one benefit of the ASD label is that the school doesn’t fight IEP eligibility. Implementation is a whole different issue.

well thanks for proving OP's point. If your kid socializes normally yet has an ASD diagnosis, it's very hard to understand.

The bolded is not normal behavior. It may sound from a single sentence description that it is merely quirky behavior, when you actually interact with an ASD kid over time, you often see that it is more than that.

Ok, maybe it's quirky behavior. But to say that a kid who is social, has tons of friends, and has some quirky social behaviors is ASD indeed raises OP's question about the ulility of the diagnosis. I can believe that the PP's child may benefit from additional classroom supports, it is indeed confusing to say a kid with no social skills issues *impacting his ability to socialize* has a social-communication disorder ...

[Anonymous]

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.