Wall Street Journal: The Autism Diagnosis That Isn’t Always Permanent

[Anonymous]

Just as many of us have been saying all along. And yes, this is important for parents starting the diagnostic process to understand.



https://www.wsj.com/articles/the-autism-diagnosis-that-isnt-always-permanent-11553526845


The Autism Diagnosis That Isn’t Always Permanent
Some children once thought to have autism spectrum disorder were later found to have other conditions or were misdiagnosed, new research finds

[Anonymous]

I can't read this - behind the paywall. This kind of research generally shows that the "misdiagnosed" children generally still struggle with other conditions. Personally, I think that having an accurate diagnosis is important because it can tailor the treatment; but I think a lot of people have autism phobia. I mean, at the point you're describing your kid as "rigid, with social skills deficits, and sensory issues" I'm not really sure why you're putting energy into avoiding an autism diagnosis ...

[Anonymous]

Anonymous wrote:I can't read this - behind the paywall. This kind of research generally shows that the "misdiagnosed" children generally still struggle with other conditions. Personally, I think that having an accurate diagnosis is important because it can tailor the treatment; but I think a lot of people have autism phobia. I mean, at the point you're describing your kid as "rigid, with social skills deficits, and sensory issues" I'm not really sure why you're putting energy into avoiding an autism diagnosis ...

You are way overgeneralizing. That may be true for your kid, but not all kids. Its not avoiding the autism diagnosis. Its about getting our kids properly diagnosed and helped vs. they being lumped in a one size fits all category and their individual needs not met. Why are you so insistent that every child is ASD vs. having them appropriately diagnosed. ASD is the catch-all as ADHD/ADD were years ago. In a few years, something else will be the big diagnosis and catch all.

Sensory issues are over diagnosed and often a money grab. Now everything is a sensory issue vs. something that can jut be a normal annoyance.

OP of this spoke nothing of her or his child as "rigid, with social skills deficits and sensory issues." That would be a light version of ASD, but that is not what is being talked about. You are the one being very rigid.

[Anonymous]

I can't read this either. As a parent on the journey towards/ruling out a diagnosis, it sounds interesting...but I also worry that it could result in kids like my dd getting NO needs met.

I mean I'm sure an insurance co would be thrilled to have to help less.

[Anonymous]

Here is a summary of the study.

https://www.sciencedaily.com/releases/2019/03/190312075923.htm

Three of the ASD-diagnosed children "outgrew" the diagnosis entirely while the other 35 had other diagnoses instead (language or learning diabillities, ADHD, anxiety, etc.).

[Anonymous]

Thank you PP for that link.

It looks like only 7% of the kids outgrew the diagnosis and the majority of those, got another diagnosis (like language, ect).

Doesn't sound like rampant overdiagnosing.

[Anonymous]

I think studies like this are so interesting and important to the big picture of diagnostic validity. But as a parent of a child who has not been diagnosed with autism but still gets a lot of the same therapies, this is the take home message:

"But by and large, these children continue to struggle with daily life. Almost all of them still have to contend with language and learning disabilities and a variety of emotional and behavioral problems."

Autism is not the boogeyman, and "outgrowing" it does not equal a magical recovery.

[Anonymous]

Anonymous wrote:

Anonymous wrote:I can't read this - behind the paywall. This kind of research generally shows that the "misdiagnosed" children generally still struggle with other conditions. Personally, I think that having an accurate diagnosis is important because it can tailor the treatment; but I think a lot of people have autism phobia. I mean, at the point you're describing your kid as "rigid, with social skills deficits, and sensory issues" I'm not really sure why you're putting energy into avoiding an autism diagnosis ...

You are way overgeneralizing. That may be true for your kid, but not all kids. Its not avoiding the autism diagnosis. Its about getting our kids properly diagnosed and helped vs. they being lumped in a one size fits all category and their individual needs not met. Why are you so insistent that every child is ASD vs. having them appropriately diagnosed. ASD is the catch-all as ADHD/ADD were years ago. In a few years, something else will be the big diagnosis and catch all.

Sensory issues are over diagnosed and often a money grab. Now everything is a sensory issue vs. something that can jut be a normal annoyance.

OP of this spoke nothing of her or his child as "rigid, with social skills deficits and sensory issues." That would be a light version of ASD, but that is not what is being talked about. You are the one being very rigid.

I'm not insisting on anything. But if you're doctor-shopping to get your kid who has "rigidity, sensory issues, and social skills deficits" a diagnosis that is NOT autism, then I have to ask what motivates you. And, I have no idea what OP wrote, but clearly they do have an agenda about supposed misdiagnosis.

[Anonymous]

Anonymous wrote:Here is a summary of the study.

https://www.sciencedaily.com/releases/2019/03/190312075923.htm

Three of the ASD-diagnosed children "outgrew" the diagnosis entirely while the other 35 had other diagnoses instead (language or learning diabillities, ADHD, anxiety, etc.).

Thanks. So 7% of the kids no longer had the diagnosis. Most of them had other diagnosis. Only 3% (of the total diagnoses) actually completely "outgrew" any developmental/mental health issues. That actually seems remarkably stable, especially since the mean diagnosis age was 2 1/4 (very young).

[Anonymous]

Anonymous wrote:Here is a summary of the study.

https://www.sciencedaily.com/releases/2019/03/190312075923.htm

Three of the ASD-diagnosed children "outgrew" the diagnosis entirely while the other 35 had other diagnoses instead (language or learning diabillities, ADHD, anxiety, etc.).

38 out of the entire study population of 569.

And, most likely, the interventions those 38 got were not inappropriate or even really different than they would have gotten for ADHD, anxiety or LD.

Also important to note that supports (done correctly) aren't really static. So as long as the kid gets the IEP/early intervention and a good team of service providers, the important thing is to be monitoring the interventions and seeing what works. For example, with my DS it became pretty clear early on that he had no LD and would not need academic supports. The fact that a SMALL subset of kids evolved in their diagnosis doesn't doesn't seem like a huge failure in the system to me, honestly.

[Anonymous]

I read the article and my reaction was "yeah, so?"

The study was on kids who were diagnosed at really young ages, like 2.5 years, in order to get them into early interventions, which of course is currently viewed as the gold standard for addressing ASD. The study found that 7% of these kids were later determined not to have ASD, although they all did have some other issue causing delays.

So again, what's the big deal? We all know that its pretty hard to diagnose at such a young age, so I don't see 7% misdiagnosis rate as surprising or problematic. They all did have issues, so it wasn't as if the diagnosis was completely off. And putting these kids into early interventions probably was not harmful and could very well have been helpful.

I think any of us on this board for awhile know that this is just the way it goes with kids with differences.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Here is a summary of the study.

https://www.sciencedaily.com/releases/2019/03/190312075923.htm

Three of the ASD-diagnosed children "outgrew" the diagnosis entirely while the other 35 had other diagnoses instead (language or learning diabillities, ADHD, anxiety, etc.).

Thanks. So 7% of the kids no longer had the diagnosis. Most of them had other diagnosis. Only 3% (of the total diagnoses) actually completely "outgrew" any developmental/mental health issues. That actually seems remarkably stable, especially since the mean diagnosis age was 2 1/4 (very young).

It was actually only three children out of 569 cases so approx. 0.5%. But yes, remarkably statuc

[Anonymous]

Anonymous wrote:I read the article and my reaction was "yeah, so?"

The study was on kids who were diagnosed at really young ages, like 2.5 years, in order to get them into early interventions, which of course is currently viewed as the gold standard for addressing ASD. The study found that 7% of these kids were later determined not to have ASD, although they all did have some other issue causing delays.

So again, what's the big deal? We all know that its pretty hard to diagnose at such a young age, so I don't see 7% misdiagnosis rate as surprising or problematic. They all did have issues, so it wasn't as if the diagnosis was completely off. And putting these kids into early interventions probably was not harmful and could very well have been helpful.

I think any of us on this board for awhile know that this is just the way it goes with kids with differences.

I think the fact that the children were all diagnosed at 2.5 means that all of the 569 were very clearly autistic. Except that some of them weren't. While ADHD may be considered to be on the same spectrum as ASD, anxiety isn't. And 3 of the "very clearly autistic" or at least very clearly diagnosable 2.5 year olds were not autistic at all. They were NT.

[Anonymous]

Anonymous wrote:I think studies like this are so interesting and important to the big picture of diagnostic validity. But as a parent of a child who has not been diagnosed with autism but still gets a lot of the same therapies, this is the take home message:

"But by and large, these children continue to struggle with daily life. Almost all of them still have to contend with language and learning disabilities and a variety of emotional and behavioral problems."

Autism is not the boogeyman, and "outgrowing" it does not equal a magical recovery.

By large, but there are kids like mine who aren't having emotional or behavioral issues or learning disabilities. Its not a magical recovery as its just that particular child's normal development pattern its different for every child and the one size fits all mold works for many but not all.

They are all the same generic therapies but how they are implemented should be very different (the problem is some providers treat all the kids the same, like we had at the school services and it was doing my child a huge disservice as the therapies were not geared to their needs or even the curriculum but the kids who were struggling the most and had the most need in the group.) Speech and OT and PT should all be catered to the individual and for a child with a language disorder who has receptive and expressive issues, that will look very different from a child with non-verbal ASD or a child with ASD and social communication language issues. PT is going to look different for a child with low tone issues vs. a child who had a broken leg and is recovering. And, beyond OT for holding a pencil and fine motor skills, I didn't get the point so I cannot even draw a comparison and even then beyond holding a pencil I couldn't figure out the benefit given we worked at home.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I can't read this - behind the paywall. This kind of research generally shows that the "misdiagnosed" children generally still struggle with other conditions. Personally, I think that having an accurate diagnosis is important because it can tailor the treatment; but I think a lot of people have autism phobia. I mean, at the point you're describing your kid as "rigid, with social skills deficits, and sensory issues" I'm not really sure why you're putting energy into avoiding an autism diagnosis ...

You are way overgeneralizing. That may be true for your kid, but not all kids. Its not avoiding the autism diagnosis. Its about getting our kids properly diagnosed and helped vs. they being lumped in a one size fits all category and their individual needs not met. Why are you so insistent that every child is ASD vs. having them appropriately diagnosed. ASD is the catch-all as ADHD/ADD were years ago. In a few years, something else will be the big diagnosis and catch all.

Sensory issues are over diagnosed and often a money grab. Now everything is a sensory issue vs. something that can jut be a normal annoyance.

OP of this spoke nothing of her or his child as "rigid, with social skills deficits and sensory issues." That would be a light version of ASD, but that is not what is being talked about. You are the one being very rigid.

I'm not insisting on anything. But if you're doctor-shopping to get your kid who has "rigidity, sensory issues, and social skills deficits" a diagnosis that is NOT autism, then I have to ask what motivates you. And, I have no idea what OP wrote, but clearly they do have an agenda about supposed misdiagnosis.

Those that I know doctor shop, and its easy to do, do it because the ASD label pays for services via insurance, especially if you have had a bad experience in the school system or cannot afford to private pay. There are benefits to an ASD label. Our school heavily pushes it as they can get more special ed and paraprofessionals.