Study -"Outgrowing" ASD diagnosis does not make you "normal"

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ASPartOfMe
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26 Apr 2019, 3:36 am

Children who outgrow autism label end up with other diagnoses

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Nearly all children who lose their autism diagnosis have other conditions, such as anxiety and language and behavioral disorders, a new study suggests1. Many also require support at school.

About 9 percent of children diagnosed with autism later don’t meet criteria for the condition. Parent reports and some medical records have suggested that these children often still have other issues, such as language problems and attention difficulties.

The new study looked at children diagnosed with autism at the Montefiore Medical Center in New York City around age 2 who no longer met criteria for the condition roughly four years later. The same team of clinicians evaluated the children at both time points. They found that the children whose traits improve enough for them to lose the autism label still qualify for other diagnoses.

“They improve socially and are more engageable and are able to follow requests, and also fell into the normal range cognitively — but they have some problems,” says lead investigator Lisa Shulman, director of autism clinical services at the Children’s Evaluation and Rehabilitation Center at Montefiore.

Of the 38 children in the study, 17 are Hispanic, 4 are African American and 14 are Caucasian. This is a much more diverse sample than in previous studies, says Letitia Naigles, professor of psychological sciences at the University of Connecticut in Storrs, who was not involved in the study.

Shulman and her colleagues reviewed the clinical records of 569 children diagnosed with autism at Montefiore from 2003 to 2013. They found 38 children who were diagnosed at age 2 and a half, on average, but ceased to meet the criteria at age 6 and a half, on average.

The researchers reviewed the children’s scores on the Childhood Autism Rating Scale, a clinician assessment of autism traits. Whenever possible, they also reviewed the children’s scores on cognitive tests and the Autism Diagnostic Observation Schedule, a gold-standard test for autism.

At the initial visit, the children had mild to moderate autism, and most had moderate to severe developmental delay.

At follow-up, all of them scored in the typical range on tests of autism traits. And to the researchers’ surprise, all of the 33 children who took cognitive tests at follow-up scored in the typical range.

“Along with going in a great direction socially, their degree of developmental delay really resolved, so these things travel together,” Shulman says. She also notes that most of the children who lost their autism diagnoses had mild autism traits to begin with.

All but 3 of the 38 children have ongoing learning or behavioral issues, however: 26 have a language or learning disability, 19 have behavior problems — attention deficit hyperactivity disorder, oppositional defiant disorder or disruptive behavior disorder — and 9 have mood conditions, anxiety, obsessive-compulsive disorder or selective mutism.

Of the 34 children for whom education plans were available, 15 attended mainstream classes and 19 were in specialized classrooms.

One important limitation of the study is that not all of the autistic children diagnosed at the clinic returned for a follow-up visit. Those who did not return may differ in important ways from those who did — for example, they might not have had any problems that warranted another visit.

The researchers don’t have all of the information for each child — another limitation. However, the clinicians note in the paper that they had not intended to collect the children’s records for a research study, says Stelios Georgiades, assistant professor of psychiatry and behavioral neurosciences at McMaster University in Hamilton, Canada, who was not involved in the study.

About half of the children in the study continue to visit Shulman’s center; her team plans to follow them as they grow.


The study is way too small to draw any conclusions

I expect further studies to confirm that all this hopeful talk of becoming not autistic is going to be another false hope for parents who want their kids to be "normal".

This suggests that the rush to diagnose earlier and earlier results in people being misdiagnosed with ASD.

On the opposite end of the spectrum(pun intended) I think clinicians are confusing maturing with becoming not autistic and also not taking into account that once the pressures of growing older come into play a lot of these people will meet the conditions for an ASD diagnosis again. I understand these studies have not been going on long enough to track these people into adulthood but saying they are not autistic anymore is grossly irresponsible. Another words, in my opinion, there is a lot of misundiagnosing going on.


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magz
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26 Apr 2019, 3:53 am

I like it when official studies confirm what we all already know from expirience.
We need it.


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kraftiekortie
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26 Apr 2019, 4:38 am

This is pretty much what happened to me.

Something clicked the summer of ‘66. I lost most of my classic autism and became, in essence, Aspergian.

I still don’t know why this happened. Pure luck?



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26 Apr 2019, 7:55 am

I was totally not interested in children’s autism when I was doing my official research. But when you are a parent of a school age child these days you have to learn about it, interest or not. So I’ve been having a filling in the corners of sorts recently in my autism knowledge.

As an adult, you learn how you are supposed to act and what are the “right” answers, so you are going to test more normal (mainstream) the older you get. Unless you are trying to be very accurate or true to yourself or whatever. In that case, you might get a “worse” or “deeper” test result. Not just with autism-any test.

But see, with kids, there is something very different going on. Some kids don’t know what the h*ll is going on and will answer randomly to any test. Some will mess it up on purpose, for their own reasons. Boredom, confusion, who knows. Some will try to please the adults and give answers they think the adults are looking for. So on and so forth. And the the adults scoring the tests always have an agenda. Usually to help the child. They might think helping means getting a particular result, which would entitle the child to certain services.

So we have parents being pressured into early diagnoses which are questionable, in order to sell services, but also adults who can perform at a higher mainstream level as they get older. It makes a funnel, where there are too many autistic children than would be accurate and too few adults than would be accurate.

By my reckoning.



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26 Apr 2019, 1:11 pm

It is my thesis that Asperger children have a deficit because their internal mental processes interfere with developmentally absorbing more automatically from their environment than is found with neruotypical development. The child mediated mental processes include much in the way of selfishness, comfort seeking, and anxiety reduction.

However, around the mid teens this internal "manual" control starts to become an advantage when previously constructed components can be modified or replaced intentionally. This can be seen in improvements in skill acquisition, coping skills, and more effective interaction with the larger world.

While unlikely of being able to function as seamlessly with the world as a neurotypical, much improvement is often seen between the Aspergers child and the Aspergers adult.



losingit1973
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26 Apr 2019, 3:08 pm

Agreed. They "outgrow" ASD until they burnout. I do not believe that one can outgrow ASD. One just becomes very proficient at masking.


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