Milder autism far outpacing 'profound' diagnoses

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ASPartOfMe
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19 Apr 2023, 6:47 pm

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A first-of-its-kind study released Wednesday shows the rate of such “profound” autism is rising, though far slower than milder autism cases.

“It's very important to know how many people have profound autism so that we can properly prepare for their needs," including more health and education services, said Alison Singer, executive director of the advocacy and research group Autism Science Foundation.

Though autism has been diagnosed for at least 80 years, the new study is the first to put a number on the share of U.S. children who have the most severe version of it. It comes less than two years after an international commission of autism experts established a definition of profound autism: children with an IQ of 50 or less, and/or kids who can't communicate through speaking.

Under that definition, about a quarter of U.S. children identified as having autism by age 8 fall into the profound category, the new study found. It means more than 110,000 elementary school-age children in the U.S. have profound autism.

The researchers looked at school and medical records from 2000 to 2016 for more than 20,000 8-year-olds identified as having autism spectrum disorders.

They found that the rate of profound diagnoses grew from about 3 cases per 1,000 children in 2000 to about 5 cases per 1,000 in 2016. But the rate of kids diagnosed with milder forms of autism grew from 4 per 1,000 to 14 per 1,000 over those years.

Milder forms of autism were more common in boys and white kids, the researchers found. Profound autism was more common in girls than boys.

The new research found a large racial gap in profound autism. Among Black children with autism, 37% had profound autism. The same was true for about one-third of Hispanic kids with autism and about one-fifth of white children with autism.

More research is needed to understand the reasons for those differences, said the CDC's Michelle Hughes, the study's lead author.

Singer said the study's publication marks a recognition by the CDC that “autism spectrum disorder diagnoses is overly broad and that people who are diagnosed with (it) have very different needs." The data should help identify schooling and residential needs, she said.

Jan Blacher, an autism researcher at the University of California at Riverside, voiced mixed feelings about the report.

Using an IQ of 50 as a definition of profound autism can be problematic, she said. She has observed children with an IQ above 70 who had the kind of symptoms associated with profound autism, like spinning or a seemingly meaningless repeating of words.

“It's the symptoms of autism that make a difference,” she said.

She worries that children who don't make the cut-off might not get the same attention and help as those who do.

“We have work to do at all levels of the continuum,” she said.


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19 Apr 2023, 7:45 pm

7th paragraph down: there are more girls with profound autism than boys? That seems unlikely, considering male diagnoses are still exceeding female diagnoses. Am I reading this wrong?


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Emmett
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19 Apr 2023, 7:51 pm

blazingstar wrote:
7th paragraph down: there are more girls with profound autism than boys? That seems unlikely, considering male diagnoses are still exceeding female diagnoses. Am I reading this wrong?

That is a strange paragraph. I'm wondering if maybe the rate is higher in girls because the diagnosis is catching up? Maybe before, there were girls that were given other diagnosis and now that's being corrected. I have no evidence for that, it's just one way it might be true.



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19 Apr 2023, 8:05 pm

blazingstar wrote:
7th paragraph down: there are more girls with profound autism than boys? That seems unlikely, considering male diagnoses are still exceeding female diagnoses. Am I reading this wrong?


Milder women are more likely to be overlooked compared to milder men.

If women need to be more profound in order to receive a diagnosis this will skew the breakdown by gender.


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19 Apr 2023, 9:43 pm

funeralxempire wrote:
Milder women are more likely to be overlooked compared to milder men.

If women need to be more profound in order to receive a diagnosis this will skew the breakdown by gender.

But if milder women are overlooked, that would only reduce the rate of mild autism in women. It wouldn't make profound diagnosis in women/girls higher than men/boys.



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19 Apr 2023, 11:54 pm

It's probably because they know they'll never be able to provide enough support for "profound" cases, so they'd rather offload it onto the patients themselves. It's a subtle kind of gaslighting imo if they tell people they don't really, actually have a problem. It takes the pressure off the ADA and employers for having to make accommodations, and allows for fewer people to claim disability benefits. Sounds like a big lose-lose to me.

Oh, almost forgot. It also helps big pharma because the anti-vaxxers won't be able to blame vaccines if there isn't really a problem. Pretty much everything USA does is in support of big pharma, so I'm sure they're involved somehow in this lobby.


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20 Apr 2023, 8:41 am

IsabellaLinton wrote:
It's probably because they know they'll never be able to provide enough support for "profound" cases, so they'd rather offload it onto the patients themselves. It's a subtle kind of gaslighting imo if they tell people they don't really, actually have a problem. It takes the pressure off the ADA and employers for having to make accommodations, and allows for fewer people to claim disability benefits. Sounds like a big lose-lose to me.

Oh, almost forgot. It also helps big pharma because the anti-vaxxers won't be able to blame vaccines if there isn't really a problem. Pretty much everything USA does is in support of big pharma, so I'm sure they're involved somehow in this lobby.

I agree. Also, it's hard to determine the number of "mild Autistics" since many of them do not end up getting diagnosed.

But what really got me was the phrase, "...like spinning or a seemingly meaningless repetition of words." I know that that is not the point of this thread or of the article originally posted but the "seemingly meaningless" part of that phrase made me sick to my stomach and made me lose any respect for this person that I might have otherwise had.


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20 Apr 2023, 9:27 am

Emmett wrote:
funeralxempire wrote:
Milder women are more likely to be overlooked compared to milder men.

If women need to be more profound in order to receive a diagnosis this will skew the breakdown by gender.

But if milder women are overlooked, that would only reduce the rate of mild autism in women. It wouldn't make profound diagnosis in women/girls higher than men/boys.


There's long been a trend of girls who are diagnosed being more severe than the average boy who gets diagnosed. If an increase occurs and the same diagnostic pattern continues one would expect more girls receiving profound diagnoses while mild girls continue to be failed like always.


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20 Apr 2023, 3:08 pm

Quote:
The new research found a large racial gap in profound autism. Among Black children with autism, 37% had profound autism. The same was true for about one-third of Hispanic kids with autism and about one-fifth of white children with autism.
I found this paragraph intriguing. Might there be some environmental/social/cultural factor affecting severity? For instance, how the child is treated by the people around them.

...and then might that also be a factor regarding paragraph 7?

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After I got my diagnosis I was able to ask my Dad a few questions about my young childhood. He said he and my Mom saw that I was doing "weird" things but decided I wasn't being bad, I was just like that...so they decided not to punish me!

Yikes! I am so glad they decided to take me the way I was. I believe that if they had tried to change me they could have easily and unintentionally destroyed me!


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20 Apr 2023, 3:20 pm

Double Retired wrote:
Quote:
The new research found a large racial gap in profound autism. Among Black children with autism, 37% had profound autism. The same was true for about one-third of Hispanic kids with autism and about one-fifth of white children with autism.
I found this paragraph intriguing. Might there be some environmental/social/cultural factor affecting severity? For instance, how the child is treated by the people around them.

...and then might that also be a factor regarding paragraph 7?

Off Topic
After I got my diagnosis I was able to ask my Dad a few questions about my young childhood. He said he and my Mom saw that I was doing "weird" things but decided I wasn't being bad, I was just like that...so they decided not to punish me!

Yikes! I am so glad they decided to take me the way I was. I believe that if they had tried to change me they could have easily and unintentionally destroyed me!
So many Autistic people have been destroyed for that very reason.


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20 Apr 2023, 3:32 pm

I'd assume the girls aren't identified by their teachers or even family members unless it's a very noticeable difference. They don't even get referred for help or assessment.

Everyone seems to like nice quiet girls who shy away or get engrossed in books (for example). If they're emotional it's considered a girl thing. It's pretty much what happened to me. My own parents didn't know I needed help. They were happy enough if I was out of sight, out of mind in my bedroom or climbing on the roof of an abandoned building somewhere at age 3, so long as I didn't cause a fuss. When I had meltdowns it's because I was a brat, not because I needed help.


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20 Apr 2023, 3:35 pm

It was similar for me. When I was being Autistic, I was punished for misbehaving. When I was locked away in my room by myself and not socializing at all with anyone for ridiculous amounts of time or when I was walking around the table for hours on end listening to the same LP for hours and hours and hour and hours, no one seemed to wonder, is there something going on with this child?


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20 Apr 2023, 3:40 pm

Apparently it was well known in my extended family that I was a moody brat, because my family always dragged me to sunshine destinations for holidays. All my cousins on one side were in California so it was all about going to beaches or sitting in the sun on a sheet of tinfoil so I'd get a suntan and go blonde instead of redhead. They basted me in baby oil. I was sullen and rude and angry all the time because of all the sensory hell. I was also afraid of hotels / motels but we had to go to those a lot with my cat left at home in the basement for a week at a time. Again, I was a whinging spoiled brat because I didn't want to get skin cancer or go to riotous family parties where everyone was drunk.

If they could shut me up with a book they were more than happy to ignore me for the entire week.

Oh almost forgot -- Arizona was loads of fun too. Just stick me out in the desert in baby oil and I'll be good, right?


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Last edited by IsabellaLinton on 20 Apr 2023, 3:42 pm, edited 1 time in total.

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20 Apr 2023, 3:42 pm

That is horrifying. What a nightmare!


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20 Apr 2023, 3:49 pm

My grandmother was a fashion designer and alcoholic socialite after they moved to CA from UK.
She used to make me walk with books on my head for posture.
She was always telling me I didn't walk properly.
I was too pale, too redhead, too shy, too moody, not feminine enough.
My clothes were never right.
It was a total hoot.

My grandfather called me a sissy because I wanted to watch Little House on the Prairie.
He wanted me to go out by their swimming pool and baste in oil a bit more.
I spent my childhood covered in third degree sunburns, welts and blisters.

My dad died from skin cancer which metastasized.
My mum has skin cancer now.
I have all sorts of permanent skin damage from it.

Fun times.


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20 Apr 2023, 4:01 pm

Goodness. That's awful.


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