ASD (mis) diagnosis vent

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:ASD is getting over diagnosed. It’s a catch all for quirks. It’s not helpful.

Couldn't agree more, it's OVERUSED AND RIDICULOUS - how is it acceptable now that everything falls under a spectrum, no one kid with ASD looks the same, it's very frustrating as parent, because the label is overused and not well understood, even from present day educators who think kids fall under the same pot. We're in the same boat, with a kid that has some ASD traits but is leaning towards more ADHD, but because he can pay attention and isn't overly hyper, somehow he's more leaning towards ASD. Isn't there something else in between - there is so much gray zone with the spectrum discourse, can't they come up with some better (more accurate) labels?!

Agree with this too.

it's striking that none of us ever get to see *experts* on ASD. We get to see therapists and psychologists etc who are experts at providing therapies. How often do people come on this forum asking about who they can go to for comprehensive case management for their ASD or ADHD kid, only to be told there is no one who is a comprehensive expert. Just people offering therapies, and it's up to the parents to pick what therapies they think will help? This is because even the therapists aren't experts at ASD. They don't really know the nuances. They only know about the proposed treatments that they are experts in.

My hunch is within 30 years, there is a new altogether different diagnosis: neither ADHD nor ASD, but a diagnosis that so many of our boys fall within that looks a little ADHD with social and emotional regulation issues, but looks nothing like what ASD used to look like 15 years ago (ie now level 3 or whatever ASD is). Basically, Aspergers. As a stand alone diagnosis again. Not ASD spectrum.

You are uninformed.

1. Of course you should have your child be assessed by an expert. A psychologist with a PhD and experience who specializes in autism and ADHD. We used Dr. Henderson at Stixrud. She does not provide therapy. She did not recommend any particular therapist. Her reports mostly focused on recommendations for services and accommodations in school.

2. But the most important point is that you don't seem to understand that research is being done as we speak, and has barely started to scratch the surface, since mental health has not been studied with the scientific method for nearly as long as diseased organs! So all the labels might change one day, not because the scientists of today are stupid and the system is rigged and wants your money... but because scientific research builds on the results that have come before, and humans' mental health is PARTICULARLY difficult to study. It's not like a mice you dissect in the lab, which is what I do to conduct research on the immune system. Here you are dealing with subjective accounts, possibly recalcitrant patients, difficulties of conducting large-scale studies, the inability to see much inside the brain, and the infinite power of the human mind to close itself to all suggestions of treatment.

3. It's understandable that you would feel frustrated at how labels are applied, the suggestions you're given for treatment, and how slow research seems to progress. Cancer patients feel that way too, you know, and in the meantime they die. But there's nothing any of us can do about it except always encourage and vote for research funding. And maybe if one of your children wants to become a research psychologist, they can actively move the science forward.

Perhaps, in fact, you are just an ass and I’m not informed.

That someone diagnoses a kid with ASD means nothing these days. For all these “asd-lite” kids, we all could find ten experts who would diagnose and ten who would not. The diagnosis is meaningless. That’s the experience of so many on this forum. If a diagnosis for these kids is as literally as random as a coin toss, perhaps that tells us that the experts diagnosing them are perhaps not as expert as we give them credit for.

It’s absolutely not as random as a coin toss. For many of the autistic kids who are less apparent as autistic externally, understanding their differences and why they are the way they are will help them and their mental health throughout their lives. I’ve read and heard countless stories of adults realizing their diagnosis, especially women, and how it helped them and in some cases even saved their lives. All these people would be considered this “asd-lite” or “you don’t seem autistic” types. With kids there’s only so much we can gather ourselves to understand their inner world.

If you are questioning the diagnosis, then question it to the providers that you are paying thousands of dollars. Have them really explain it to you clearly so you can accept this too. They must meet certain criteria if traits in the DSM, but it is often nuanced detective work when it is subtle. Excellent providers, such as Dr Henderson, know the right questions to ask parents, teachers, the right things to observe, etc. Also, a diagnosis can be changed as the child gets older and the environment demands exceed their capacity to handle it. This includes more complicated social rules as kids get older, challenges managing life as there are more demands, etc.

an autism diagnosis should not take “nuanced detective work.” It is by definition a difference in social communication that causes significant clinical impact.

Are your the same poster who posted earlier? For some kids no but others it will take that. Some kids don't have a classic presentation or they can mask really well and know they are stressed about something but is it due to anxiety, a mood disorder, because they can't focus or because they lack social communication skills?

[Anonymous]

As the parent of a child diagnosed with asd, and whose diagnosis has been concurred with every professional we've seen, I think there is perhaps some denial going on in this thread. Just saying.

[Anonymous]

Anonymous wrote:As the parent of a child diagnosed with asd, and whose diagnosis has been concurred with every professional we've seen, I think there is perhaps some denial going on in this thread. Just saying.

Or, maybe you are in denial that there can be misdiagnosis.

[Anonymous]

Anonymous wrote:

Anonymous wrote:As the parent of a child diagnosed with asd, and whose diagnosis has been concurred with every professional we've seen, I think there is perhaps some denial going on in this thread. Just saying.

Or, maybe you are in denial that there can be misdiagnosis.

No. I'm a parent who has gone through my child getting a diagnosis, and I can recognize the feelings and expressions that some people here have as denial.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:As the parent of a child diagnosed with asd, and whose diagnosis has been concurred with every professional we've seen, I think there is perhaps some denial going on in this thread. Just saying.

Or, maybe you are in denial that there can be misdiagnosis.

No. I'm a parent who has gone through my child getting a diagnosis, and I can recognize the feelings and expressions that some people here have as denial.

Or, some of us know as our kids got older and the diagnosis made no sense.

[Anonymous]

Anonymous wrote:As the parent of a child diagnosed with asd, and whose diagnosis has been concurred with every professional we've seen, I think there is perhaps some denial going on in this thread. Just saying.

Because your child clearly meets the criteria. Some children might present to you as NT but inside they are afraid of schedule changes, have sensory issues, have more subtle stims, and can't read non-verbal cues.

[Anonymous]

We've met at least two kids who have "grown out of the diagnosis."

Did they have some miracle therapies that transformed them into a NT child? I think it's more likely they were on the border and misdiagnosed.

[Anonymous]

This is such an interesting thread. We've recently been referred to get DD assessed for ASD. I am an anxious person (on meds, yay!) and so of course I have been watching for this since DD was little. But I was still caught off guard when it was recently suggested to us. Multiple people (family, OT) who are not ASD experts but who are professionals who work with children have told us in the past that they were not concerned that DD has ASD.

It has just struck me that there is a huge disconnect between what most people think ASD is and how experts view it. We do want to know if DD is on the spectrum if it will help her, and are so curious to see what the assessment says.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:ASD is getting over diagnosed. It’s a catch all for quirks. It’s not helpful.

Couldn't agree more, it's OVERUSED AND RIDICULOUS - how is it acceptable now that everything falls under a spectrum, no one kid with ASD looks the same, it's very frustrating as parent, because the label is overused and not well understood, even from present day educators who think kids fall under the same pot. We're in the same boat, with a kid that has some ASD traits but is leaning towards more ADHD, but because he can pay attention and isn't overly hyper, somehow he's more leaning towards ASD. Isn't there something else in between - there is so much gray zone with the spectrum discourse, can't they come up with some better (more accurate) labels?!

Agree with this too.

it's striking that none of us ever get to see *experts* on ASD. We get to see therapists and psychologists etc who are experts at providing therapies. How often do people come on this forum asking about who they can go to for comprehensive case management for their ASD or ADHD kid, only to be told there is no one who is a comprehensive expert. Just people offering therapies, and it's up to the parents to pick what therapies they think will help? This is because even the therapists aren't experts at ASD. They don't really know the nuances. They only know about the proposed treatments that they are experts in.

My hunch is within 30 years, there is a new altogether different diagnosis: neither ADHD nor ASD, but a diagnosis that so many of our boys fall within that looks a little ADHD with social and emotional regulation issues, but looks nothing like what ASD used to look like 15 years ago (ie now level 3 or whatever ASD is). Basically, Aspergers. As a stand alone diagnosis again. Not ASD spectrum.

You are uninformed.

1. Of course you should have your child be assessed by an expert. A psychologist with a PhD and experience who specializes in autism and ADHD. We used Dr. Henderson at Stixrud. She does not provide therapy. She did not recommend any particular therapist. Her reports mostly focused on recommendations for services and accommodations in school.

2. But the most important point is that you don't seem to understand that research is being done as we speak, and has barely started to scratch the surface, since mental health has not been studied with the scientific method for nearly as long as diseased organs! So all the labels might change one day, not because the scientists of today are stupid and the system is rigged and wants your money... but because scientific research builds on the results that have come before, and humans' mental health is PARTICULARLY difficult to study. It's not like a mice you dissect in the lab, which is what I do to conduct research on the immune system. Here you are dealing with subjective accounts, possibly recalcitrant patients, difficulties of conducting large-scale studies, the inability to see much inside the brain, and the infinite power of the human mind to close itself to all suggestions of treatment.

3. It's understandable that you would feel frustrated at how labels are applied, the suggestions you're given for treatment, and how slow research seems to progress. Cancer patients feel that way too, you know, and in the meantime they die. But there's nothing any of us can do about it except always encourage and vote for research funding. And maybe if one of your children wants to become a research psychologist, they can actively move the science forward.

Perhaps, in fact, you are just an ass and I’m not informed.

That someone diagnoses a kid with ASD means nothing these days. For all these “asd-lite” kids, we all could find ten experts who would diagnose and ten who would not. The diagnosis is meaningless. That’s the experience of so many on this forum. If a diagnosis for these kids is as literally as random as a coin toss, perhaps that tells us that the experts diagnosing them are perhaps not as expert as we give them credit for.

It’s absolutely not as random as a coin toss. For many of the autistic kids who are less apparent as autistic externally, understanding their differences and why they are the way they are will help them and their mental health throughout their lives. I’ve read and heard countless stories of adults realizing their diagnosis, especially women, and how it helped them and in some cases even saved their lives. All these people would be considered this “asd-lite” or “you don’t seem autistic” types. With kids there’s only so much we can gather ourselves to understand their inner world.

If you are questioning the diagnosis, then question it to the providers that you are paying thousands of dollars. Have them really explain it to you clearly so you can accept this too. They must meet certain criteria if traits in the DSM, but it is often nuanced detective work when it is subtle. Excellent providers, such as Dr Henderson, know the right questions to ask parents, teachers, the right things to observe, etc. Also, a diagnosis can be changed as the child gets older and the environment demands exceed their capacity to handle it. This includes more complicated social rules as kids get older, challenges managing life as there are more demands, etc.

an autism diagnosis should not take “nuanced detective work.” It is by definition a difference in social communication that causes significant clinical impact.

The significant clinical impact may be internally presenting for the individuals who may present more nuanced. As someone else said, it could be masking that leads to anxiety, depression, suicidal thoughts, eating disorders, substance abuse, etc. This is why many girls are missed, late diagnosed and struggle for years.

[Anonymous]

Anonymous wrote:

Anonymous wrote:As the parent of a child diagnosed with asd, and whose diagnosis has been concurred with every professional we've seen, I think there is perhaps some denial going on in this thread. Just saying.

Because your child clearly meets the criteria. Some children might present to you as NT but inside they are afraid of schedule changes, have sensory issues, have more subtle stims, and can't read non-verbal cues.

I'm who you quoted. Not sure how this applies to me, but I agree.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:ASD is getting over diagnosed. It’s a catch all for quirks. It’s not helpful.

Couldn't agree more, it's OVERUSED AND RIDICULOUS - how is it acceptable now that everything falls under a spectrum, no one kid with ASD looks the same, it's very frustrating as parent, because the label is overused and not well understood, even from present day educators who think kids fall under the same pot. We're in the same boat, with a kid that has some ASD traits but is leaning towards more ADHD, but because he can pay attention and isn't overly hyper, somehow he's more leaning towards ASD. Isn't there something else in between - there is so much gray zone with the spectrum discourse, can't they come up with some better (more accurate) labels?!

Agree with this too.

it's striking that none of us ever get to see *experts* on ASD. We get to see therapists and psychologists etc who are experts at providing therapies. How often do people come on this forum asking about who they can go to for comprehensive case management for their ASD or ADHD kid, only to be told there is no one who is a comprehensive expert. Just people offering therapies, and it's up to the parents to pick what therapies they think will help? This is because even the therapists aren't experts at ASD. They don't really know the nuances. They only know about the proposed treatments that they are experts in.

My hunch is within 30 years, there is a new altogether different diagnosis: neither ADHD nor ASD, but a diagnosis that so many of our boys fall within that looks a little ADHD with social and emotional regulation issues, but looks nothing like what ASD used to look like 15 years ago (ie now level 3 or whatever ASD is). Basically, Aspergers. As a stand alone diagnosis again. Not ASD spectrum.

You are uninformed.

1. Of course you should have your child be assessed by an expert. A psychologist with a PhD and experience who specializes in autism and ADHD. We used Dr. Henderson at Stixrud. She does not provide therapy. She did not recommend any particular therapist. Her reports mostly focused on recommendations for services and accommodations in school.

2. But the most important point is that you don't seem to understand that research is being done as we speak, and has barely started to scratch the surface, since mental health has not been studied with the scientific method for nearly as long as diseased organs! So all the labels might change one day, not because the scientists of today are stupid and the system is rigged and wants your money... but because scientific research builds on the results that have come before, and humans' mental health is PARTICULARLY difficult to study. It's not like a mice you dissect in the lab, which is what I do to conduct research on the immune system. Here you are dealing with subjective accounts, possibly recalcitrant patients, difficulties of conducting large-scale studies, the inability to see much inside the brain, and the infinite power of the human mind to close itself to all suggestions of treatment.

3. It's understandable that you would feel frustrated at how labels are applied, the suggestions you're given for treatment, and how slow research seems to progress. Cancer patients feel that way too, you know, and in the meantime they die. But there's nothing any of us can do about it except always encourage and vote for research funding. And maybe if one of your children wants to become a research psychologist, they can actively move the science forward.

Perhaps, in fact, you are just an ass and I’m not informed.

That someone diagnoses a kid with ASD means nothing these days. For all these “asd-lite” kids, we all could find ten experts who would diagnose and ten who would not. The diagnosis is meaningless. That’s the experience of so many on this forum. If a diagnosis for these kids is as literally as random as a coin toss, perhaps that tells us that the experts diagnosing them are perhaps not as expert as we give them credit for.

It’s absolutely not as random as a coin toss. For many of the autistic kids who are less apparent as autistic externally, understanding their differences and why they are the way they are will help them and their mental health throughout their lives. I’ve read and heard countless stories of adults realizing their diagnosis, especially women, and how it helped them and in some cases even saved their lives. All these people would be considered this “asd-lite” or “you don’t seem autistic” types. With kids there’s only so much we can gather ourselves to understand their inner world.

If you are questioning the diagnosis, then question it to the providers that you are paying thousands of dollars. Have them really explain it to you clearly so you can accept this too. They must meet certain criteria if traits in the DSM, but it is often nuanced detective work when it is subtle. Excellent providers, such as Dr Henderson, know the right questions to ask parents, teachers, the right things to observe, etc. Also, a diagnosis can be changed as the child gets older and the environment demands exceed their capacity to handle it. This includes more complicated social rules as kids get older, challenges managing life as there are more demands, etc.

an autism diagnosis should not take “nuanced detective work.” It is by definition a difference in social communication that causes significant clinical impact.

The significant clinical impact may be internally presenting for the individuals who may present more nuanced. As someone else said, it could be masking that leads to anxiety, depression, suicidal thoughts, eating disorders, substance abuse, etc. This is why many girls are missed, late diagnosed and struggle for years.

And that's where I get stuck. If ASD is presenting itself as performance anxiety, I don't think social skills groups would be helpful. Shouldn't we treat the symptoms whatever we decide to call them.

- OP

[Anonymous]

I feel for you OP. My DS was diagnosed with ADHD through neuropsych at 7 but there is definitely more going on. He was a preemie and low birth weight, so with those risk factors, it's been on my radar from the beginning. When we redid our neuropsych at 12, I asked that he be evaluated for ASD. He's had several teachers who think he's autistic, but no clinician he's seen since birth: dev peds, neuropsychologists, etc. believe that to be the case. He got a different diagnosis at this most recent neuropsych. I still wonder if ASD may show up more clearly as he gets older. I don't know. I think there is a lot of crossover once you are neurodivergent in some way, and a lot we don't know about the brain. There is also denial in parents, and bias in evaluators.

I think the best you can do is go with your gut, and do the interventions that make the most sense to who you know your child to be.

[Anonymous]

Anonymous wrote:We've met at least two kids who have "grown out of the diagnosis."

Did they have some miracle therapies that transformed them into a NT child? I think it's more likely they were on the border and misdiagnosed.

Did the now young adult child decide that they do not identify themselves as autistic? Or did Mom/Dad just go 'autism's over'!

[Anonymous]

Anonymous wrote:We've met at least two kids who have "grown out of the diagnosis."

Did they have some miracle therapies that transformed them into a NT child? I think it's more likely they were on the border and misdiagnosed.

You don't outgrow ASD. Kids can often have symptoms of ASD due to other developmental delays or disorders but it usually gets teased out between 6-10 or sometimes a bit later. There are no miracle therapies. Things can present very similar at a young age and often evaluators will diagnose it as ASD as the ASD will pay for speech, OT, ABA therapies that kids may not be able to get via insurance without the golden diagnosis.

[Anonymous]

Anonymous wrote:I feel for you OP. My DS was diagnosed with ADHD through neuropsych at 7 but there is definitely more going on. He was a preemie and low birth weight, so with those risk factors, it's been on my radar from the beginning. When we redid our neuropsych at 12, I asked that he be evaluated for ASD. He's had several teachers who think he's autistic, but no clinician he's seen since birth: dev peds, neuropsychologists, etc. believe that to be the case. He got a different diagnosis at this most recent neuropsych. I still wonder if ASD may show up more clearly as he gets older. I don't know. I think there is a lot of crossover once you are neurodivergent in some way, and a lot we don't know about the brain. There is also denial in parents, and bias in evaluators.

I think the best you can do is go with your gut, and do the interventions that make the most sense to who you know your child to be.

Teachers take very quick one semester classes at best for special needs and they are not trained so they are making guesses. They typically only understand ASD and ADHD so those are generally the go-to diagnosis. If no one else is seeing it, including you, go with your gut and it's not ASD.