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

[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.

Agree, regardless of the diagnosis and even before we could get in, we started speech services knowing child's speech was behind at age 2. We weren't going to wait for a doctor or someone else to tell us and our child never got services early on through the public system as we private paid and used insurance so how are like that even tracked. I know multiple families who got fed up with public school services and went private directly.

You have a huge range of families from some who get their kids services too late, some of us who start very early to some who for what ever reason choose not to.

I can see how families choose not to early on. Our first evaluation at Children's said my child was fine and they'd catch up on their own and didn't need services. I knew better and private paid services and got better evaluations. But, I can see a family saying hey, Children's said XXX and waiting.

[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?

If the diagnosis was so subtle that it went missed for years, what services would the child have been getting? The parents were still likely working to address any present deficits.

Let's not forget that an ASD diagnosis can be subjective, as not all providers are going through the proper steps for full evaluations. My DS received an ASD diagnosis from a very well-regarded children's hospital (out of state) after a psychologist observed him for fifteen minutes. He was three years old. I was naive and uninformed and had no idea this is what was considered a "drive-by diagnosis."

I initially took him to a psychologist because he had horrible separation anxiety and a language delay, and I was looking for pointers how to best deal with the anxiety (tips, exercises, books, etc.) The psychologist and her young intern interviewed me for 15 minutes, played with him for 15 minutes, left the room to discuss their findings for 15 minutes, and spent the last 15 minutes reviewing their diagnosis with me. We walked out with an ASD diagnosis.

We continued speech therapy. He did not qualify for OT, ABA, or any services through our school district. We worked to treat the anxiety with an MD, who would not give us a referral for an ADOS. Once in school, the school district did not feel he needed to be tested for ASD. Once the language came in (it was a slug) and the anxiety lessened, we had ourselves a quirky, creative, marches-to-his-own beat kid. Is he technically on the spectrum? I have no idea; it depends who you ask. What other therapies could we possible have done in the meantime?

[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 take it, you are new here?
-pediatrician
-developmental pediatrician
-neurologist
-consult with neuropsycology to schedule eval

They don't give out evals like candy!

[Anonymous]

Anonymous wrote:

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 take it, you are new here?
-pediatrician
-developmental pediatrician
-neurologist
-consult with neuropsycology to schedule eval

They don't give out evals like candy!

Depends on your insurance. Ours is very generous. They paid for several evaluations and if needed at the proper age would have paid for a neuropsych. We were required to have yearly appointments and regularly testing for our insurance.

[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?

If the diagnosis was so subtle that it went missed for years, what services would the child have been getting? The parents were still likely working to address any present deficits.

Let's not forget that an ASD diagnosis can be subjective, as not all providers are going through the proper steps for full evaluations. My DS received an ASD diagnosis from a very well-regarded children's hospital (out of state) after a psychologist observed him for fifteen minutes. He was three years old. I was naive and uninformed and had no idea this is what was considered a "drive-by diagnosis."

I initially took him to a psychologist because he had horrible separation anxiety and a language delay, and I was looking for pointers how to best deal with the anxiety (tips, exercises, books, etc.) The psychologist and her young intern interviewed me for 15 minutes, played with him for 15 minutes, left the room to discuss their findings for 15 minutes, and spent the last 15 minutes reviewing their diagnosis with me. We walked out with an ASD diagnosis.

We continued speech therapy. He did not qualify for OT, ABA, or any services through our school district. We worked to treat the anxiety with an MD, who would not give us a referral for an ADOS. Once in school, the school district did not feel he needed to be tested for ASD. Once the language came in (it was a slug) and the anxiety lessened, we had ourselves a quirky, creative, marches-to-his-own beat kid. Is he technically on the spectrum? I have no idea; it depends who you ask. What other therapies could we possible have done in the meantime?

We had the same experience with a developmental ped. It was a 40 minute appointment and walked out with an ASD diagnosis. He barely engaged and just said ASD, here's all the services I can help you with and that was it. Great for paying for services but not helpful with what was actually going on.

[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.

This study was done through a clinic, so it has nothing to do with educational autism. Most researchers are aware of every variable you can think of and many more that you can't. They try to control for all that and they also tell you what they couldn't control for. In this case, they were able to estimate how many kids dropped out. Even if you assume that every single one of them dropped out because they had no further problems, if your 2.5 year old gets an ASD diagnosis, it's more likely than not he has ASD or a look-alike disability.

[Anonymous]

Anonymous wrote: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.

The avg age for kids diagnosed with Asperger’s is 8 yrs old. Kids with Aspergers/autism, level 1, obviously miss an earlier autism diagnosis since they do not have speech delays and the autism isn’t apparent until they are older and in school. Since the study was conducted on younger kids who received an autism diagnosis at a young age, they all had very obvious autistic traits.

[Anonymous]

Anonymous wrote:

Anonymous wrote: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.

The avg age for kids diagnosed with Asperger’s is 8 yrs old. Kids with Aspergers/autism, level 1, obviously miss an earlier autism diagnosis since they do not have speech delays and the autism isn’t apparent until they are older and in school. Since the study was conducted on younger kids who received an autism diagnosis at a young age, they all had very obvious autistic traits.

Level 1 kids can have speech delays. The levels have to do with levels of support needed, not speech delays. Speech delays are very noticeable, so I imagine a lot of the kids caught early are brought in for that. But they can still catch up on speech later, or fail to catch up but not need a lot of support.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote: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.

The avg age for kids diagnosed with Asperger’s is 8 yrs old. Kids with Aspergers/autism, level 1, obviously miss an earlier autism diagnosis since they do not have speech delays and the autism isn’t apparent until they are older and in school. Since the study was conducted on younger kids who received an autism diagnosis at a young age, they all had very obvious autistic traits.

Level 1 kids can have speech delays. The levels have to do with levels of support needed, not speech delays. Speech delays are very noticeable, so I imagine a lot of the kids caught early are brought in for that. But they can still catch up on speech later, or fail to catch up but not need a lot of support.

True. This is why there is no more Asperger’s and High Functioning Autism (HFA). It use to be that mildly affected autistic kids without speech delays would be diagnosed with Asperger’s and mildly affected autistic kids with speech delays would be diagnosed with HFA under the DSM-4.

It was found that there was no significant difference in outcomes between HFA and Asperger’s once the kids with HFA caught up in language. Thus under the DSM-5, there is no longer HFA or Asperger’d just autism, level 1.

In the study, they were only looking at the kids who have HFA since they were diagnosed at a very young age. It is definitely possible for some of these kids to lose the diagnosis once their language catches up. According to the study, it said the ones that lost the diagnosis had very “mild” symptoms to begin with.

[Anonymous]

^And I would be curious how many of these kids who lost the diagnosis ended up with something similar like social communications disorder. It is certainly possible to be autistic or still have the core social communications deficits without speech delays.