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

[Anonymous]

Exactly-heard of many parents doctor-shopping FOR an ASD diagnosis, not the other way around.

[Anonymous]

Our school gave us the heads up in prek4 with an IEP. We saw doctors for a second, third,... opinion who confirmed autism.

Not sure who doctor shops for an ASD diagnosis when their child has no issues. Parents take their kid to see doctors when there are issues. If that is “doctor shopping” so be it.

[Anonymous]

Lots of people go doctor shopping for ADHD to get accommodations. I know people with young children who look for an ASD diagnosis because it gets them insurance coverage and more services than a simple developmental delay or possible ADHD or speech disorder.

[Anonymous]

The study is not showing evidence of doctor shopping for an ASD diagnosis. 93% of the kids actually did have ASD. Most of the rest had a disorder that can resemble ASD or be comorbid with it.

[Anonymous]

The follow up was when the kids averaged 6 1/2 years old. So it is still too early to tell what happens to these kids when they are adults. I hope they continue to follow these kids into adulthood.

[Anonymous]

Anonymous wrote:

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.

The one size fits all model doesn't work for anybody, and I'm sorry you went through that. But that really has nothing to do with this research where 99.5% of the kids did need treatment. The other 0.5% may have simply been delayed or the treatment helped to completely resolve the problem. We don't know what happened because the researchers don't know:

"Our sense is that some children with ASD respond to intervention while others have unique developmental trajectories that lead to improvement. Those children who evolve in a positive direction generally have the mildest symptoms to begin with."

[Anonymous]

Anonymous wrote:Exactly-heard of many parents doctor-shopping FOR an ASD diagnosis, not the other way around.

Can you point us to the data of children who were diagnosed as NOT having ASD but later turned out to have ASD and so missed years of therapy?

[Anonymous]

Anonymous wrote:

Anonymous wrote:Exactly-heard of many parents doctor-shopping FOR an ASD diagnosis, not the other way around.

Can you point us to the data of children who were diagnosed as NOT having ASD but later turned out to have ASD and so missed years of therapy?

I don't have data, but anecdotes. My guess is that most of these kids were still given significant supports, and did not actually miss years of therapy. The kind of ASD that actually benefits from intensive ABA is not likely to be missed. False negatives would be more likely to be Asbergers/HFA. Generally if parents are concerned enough to get an ASD evaluation, they're still going to get some services even without the diagnosis. This is especially true since younger kids can qualify for the Developmental Delay label for IEPs. My kid may or may not have ASD but he has gotten pretty much the same sorts of services anyway for the past 3 years.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Exactly-heard of many parents doctor-shopping FOR an ASD diagnosis, not the other way around.

Can you point us to the data of children who were diagnosed as NOT having ASD but later turned out to have ASD and so missed years of therapy?

I don't have data, but anecdotes. My guess is that most of these kids were still given significant supports, and did not actually miss years of therapy. The kind of ASD that actually benefits from intensive ABA is not likely to be missed. False negatives would be more likely to be Asbergers/HFA. Generally if parents are concerned enough to get an ASD evaluation, they're still going to get some services even without the diagnosis. This is especially true since younger kids can qualify for the Developmental Delay label for IEPs. My kid may or may not have ASD but he has gotten pretty much the same sorts of services anyway for the past 3 years.

It is the norm at our charter school that kids in prek3 and prek4 get their IEP under developmental delay even if they already have a diagnosis like autism. It isn’t until they reach K that the IEP is put under autism, OHI, SLD, etc. the goal is that the child gets the supports and services they need and it doesn’t matter under what category they qualify for the IEP.

Since this is a charter school, the only program available is full inclusion with pull ins or pull outs as needed.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Exactly-heard of many parents doctor-shopping FOR an ASD diagnosis, not the other way around.

Can you point us to the data of children who were diagnosed as NOT having ASD but later turned out to have ASD and so missed years of therapy?

I don't have data, but anecdotes. My guess is that most of these kids were still given significant supports, and did not actually miss years of therapy. The kind of ASD that actually benefits from intensive ABA is not likely to be missed. False negatives would be more likely to be Asbergers/HFA. Generally if parents are concerned enough to get an ASD evaluation, they're still going to get some services even without the diagnosis. This is especially true since younger kids can qualify for the Developmental Delay label for IEPs. My kid may or may not have ASD but he has gotten pretty much the same sorts of services anyway for the past 3 years.

I've heard of parents denying their ASD diagnosis. You don't have to doctor shop for that. Just ignore what the doctor tells you and go home.

[Anonymous]

Or just not pursuing a diagnosis beiyond language. I mean, I'm trying to find out if my dd is on the spectrum, and its taken me nearly a year and multiple Dr visits, referrals and paper work to finally get a full evaluation, next month.

Its very easy to 'not' get a diagnosis.

[Anonymous]

Anonymous wrote:Or just not pursuing a diagnosis beiyond language. I mean, I'm trying to find out if my dd is on the spectrum, and its taken me nearly a year and multiple Dr visits, referrals and paper work to finally get a full evaluation, next month.

Its very easy to 'not' get a diagnosis.

So, you are doctor shopping to get the diagnosis?

[Anonymous]

The problem with these studies is it is tracked by doctor visits and reports. Those of us with kids doing well stop going to the doctor as there is no need. So, its hard to track if kids fell off the ASD diagnosis as those kids basically "disappear" and move on with their lives. For us the only need for the developmental ped was to get services. Once those professionals terminated services as the goals were reached and could no longer justify services, we had a few more conversations if a need arose if I needed advice but no more visits or tracking. And, if a child doesn't have an IEP, they aren't tracked that way. Likewise, kids are educationally diagnosed so schools can provide services but may not actually have it so how are those kids counted - by their private evaluations or school? There are so many variables to this.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Or just not pursuing a diagnosis beiyond language. I mean, I'm trying to find out if my dd is on the spectrum, and its taken me nearly a year and multiple Dr visits, referrals and paper work to finally get a full evaluation, next month.

Its very easy to 'not' get a diagnosis.

So, you are doctor shopping to get the diagnosis?

I don't think that's what she's saying? She's saying it's very hard to even get the full ASD evaluation. It would be very easy to just stop at an earlier stage, especially if your child is getting some services and therapies and is progressing. (Our situation exactly.)

[Anonymous]

Anonymous wrote:The problem with these studies is it is tracked by doctor visits and reports. Those of us with kids doing well stop going to the doctor as there is no need. So, its hard to track if kids fell off the ASD diagnosis as those kids basically "disappear" and move on with their lives. For us the only need for the developmental ped was to get services. Once those professionals terminated services as the goals were reached and could no longer justify services, we had a few more conversations if a need arose if I needed advice but no more visits or tracking. And, if a child doesn't have an IEP, they aren't tracked that way. Likewise, kids are educationally diagnosed so schools can provide services but may not actually have it so how are those kids counted - by their private evaluations or school? There are so many variables to this.

I think in this study they actually directly determined that the 38 kids who lost the diagnosis had lost it.