U.S. study charts changing prevalence of profound and non-profound autism
Community traits: Children with profound autism are more likely to be girls than are their peers with non-profound autism.
Laurence Mouton / Getty Images
More than a quarter of autistic 8-year-olds in the United States have profound autism, according to a study published today in Public Health Reports. Although the overall prevalence of profound autism in this age group increased from 2002 to 2016, the prevalence of non-profound autism did so at a sharper rate, the findings show.
The results align with the idea that much of autism’s dramatic rise over the past three decades stems from diagnostic changes. “We are now finding people with autism who don’t have intellectual disability and who have more fluent language” — and who may not have been diagnosed 20 or 30 years ago, says Catherine Lord, distinguished professor of psychiatry and education at the University of California, Los Angeles, who was not involved in the work.
The term profound autism, introduced in December 2021 by Lord and her colleagues as part of the Lancet Commission on the Future of Care and Clinical Research in Autism, describes autistic people who likely need lifelong 24/7 care, many of whom have intellectual disability, limited communication abilities or both. The commission estimated at the time that anywhere from 18 to 48 percent of the autistic population might fit this description, according to an analysis of three separate datasets from the U.S., the United Kingdom and Norway.
The new estimate — the first based on data from 20,135 autistic children, collected by the U.S. Centers for Disease Control and Prevention’s Autism and Developmental Disabilities Monitoring (ADDM) Network — falls in the middle of that range at 26.7 percent.
But non-white autistic children are more likely than their white peers to have profound autism, the work shows. The prevalence is 76 percent higher for Black children, 55 percent higher for children from Asian, Native Hawaiian or other Pacific Islander backgrounds, 50 percent higher for Hispanic children and 33 percent higher for American Indian (Native American) and Alaska Native children. Children with profound autism are also more likely to come from low socioeconomic backgrounds compared with their peers with non-profound autism.
Those differences point to disparities in how clinicians diagnose autism across different communities, Lord says.
“We probably are not picking up the more able kids with autism in minority ethnic groups,” she says. “It tells us more about who’s not there than who’s there.”
Profound autism prevalence also varies by gender and region, the study shows. The results can help researchers and clinicians plan for the services and supports that people who meet the criteria for profound autism may need over their lifetime, says study investigator Michelle Hughes, an epidemiologist at the CDC. “We saw this as an opportunity to bring data to the conversation,” she says.
The ADDM Network has released reports on autism prevalence at study sites in the U.S. every two years since 2000. For those reports, the researchers use data from medical and educational records to estimate the number of 4- and 8-year-olds with autism in a given year. The network is continuing to track autism prevalence at its current sites and announced yesterday that it plans to expand its surveillance to 5 additional sites — including one in Puerto Rico — for the next funding cycle.
In the new study, CDC researchers used a similar approach to estimate the number of 8-year-olds with profound autism across 15 sites for the surveillance years between 2000 and 2016, excluding 2012 and 2014 because they did not have information on children’s verbal abilities for those years. They classified children as having profound autism if a clinician reviewing their records determined they fit the diagnostic criteria for autism and their records indicated that they were nonverbal, minimally verbal or had an IQ below 50.
In 2000, about 27 of every 10,000 children within the network had profound autism, and 39 in 10,000 had non-profound autism, the team found. And although prevalence increased for both groups over the next 16 years, that of non-profound autism did so more rapidly — reaching 143 per 10,000, compared with 46 per 10,000 for profound autism.
Group change: As more children with non-profound autism are diagnosed over time, the proportion of the autistic population with profound autism decreases.
Courtesy Hughes et al. / CDC
Profound autism prevalence is also relatively stable across regions, whereas the prevalence of children with non-profound autism varies more widely, the study shows: from 260 per 10,000 in New Jersey to 104 per 10,000 in Colorado for the 2016 surveillance year.
Those regional differences may be explained by how accessible services are in a given state, as well as the site’s racial and ethnic makeup, Lord says.
Autistic girls are about 25 percent more likely to be classified as having profound autism than their male peers, the findings show. Although it is possible that many autistic girls with non-profound autism are not diagnosed, it may also be that girls are more likely than boys to survive with the genetic mutations that cause this presentation of autism, Lord says.
The findings fit, to a large degree, with what the Lancet commission expected, Lord says. For example, most of the children with profound autism have low adaptive-functioning scores, the new study shows, and they are more likely than children with non-profound autism to have self-injurious behaviors and seizures. Having a more complete picture of who these children are and what traits they have will help researchers and clinicians provide better recommendations for their well-being, she says.
But the study is the first of its kind and needs to be replicated, Lord adds, noting methodological challenges such as incomplete records. “The numbers could be high — or low,” she says, because the researchers had to make inferences on data that was not systematically collected.
Moving forward, it will also be important to gain a better understanding of autism in the non-white population, says Santhosh Girirajan, associate professor of genomics at Pennsylvania State University in University Park, who was not involved in the work.
“What we use in white populations might not be applicable in non-white populations,” Girirajansays. Addressing that might take redefining some of the assessments to account for cultural and familial differences, he says — and may ultimately help the field better understand autism as a whole.
Cite this article: https://doi.org/10.53053/TCER1579
[url=https://wmlogs.com]Top Affiliate Programs[/url] – Церемонный сайт каталога партнерских программ
[url=https://wmlogs.com/ru]Каталог партнерских програм[/url] – Официальный сайт Каталог партнерских програм
We’re a group of volunteers and starting a new scheme in our community. Your site provided us with valuable info to work on. You have done a formidable job and our entire community will be grateful to you.
I loved as much as you’ll receive carried out right here.
The sketch is tasteful, your authored material stylish.
nonetheless, you command get got an shakiness over that you wish be delivering the following.
unwell unquestionably come further formerly again since exactly the same
nearly a lot often inside case you shield this hike.
Thank you for sharing excellent informations. Your site is very cool. I’m impressed by the details that you¦ve on this site. It reveals how nicely you understand this subject. Bookmarked this web page, will come back for extra articles. You, my pal, ROCK! I found simply the info I already searched all over the place and simply could not come across. What a great web-site.
I too think therefore, perfectly composed post! .
These are in fact enormous ideas in about blogging.
You have touched some pleasant points here.
Any way keep up wrinting.
Remarkable! Its actually awesome paragraph, I have got much clear idea about from this piece of writing.
Excellent website you have here but I was wanting to know if you knew of any discussion boards
that cover the same topics talked about in this article? I’d really love to be a
part of community where I can get suggestions from other experienced people that share the same interest.
If you have any suggestions, please let me know. Many thanks!
magnificent submit, very informative. I wonder why the
other specialists of this sector don’t realize this.
You should continue your writing. I am confident, you’ve
a great readers’ base already!
Way cool! Some very valid points! I appreciate you writing this
article and also the rest of the site is also very good.
Its like you read my thoughts! You seem to grasp
so much approximately this, like you wrote the e book
in it or something. I feel that you could do with a few p.c.
to force the message house a bit, but instead of
that, that is wonderful blog. An excellent read. I’ll certainly be back.
I do agree with all of the ideas you’ve offered for your
post. They are very convincing and can definitely work.
Still, the posts are too short for novices. May you please
prolong them a bit from next time? Thank you for the post.
Great V I should definitely pronounce, impressed with your website. I had no trouble navigating through all the tabs and related info ended up being truly easy to do to access. I recently found what I hoped for before you know it in the least. Reasonably unusual. Is likely to appreciate it for those who add forums or anything, web site theme . a tones way for your customer to communicate. Excellent task..
Howdy! Someoone in mmy Facebook group shared this ite with us soo I came
too give iit a look. I’m drfinitely lovin thhe information.
I’m bookmarking and wijll bee tweetin tthis tto myy followers!
Great blig and amazing designn and style.
Incredible! This blog looks just like my old one! It’s on a entirely different subject
but it has pretty much the same page layout and design. Outstanding choice of colors!
I am curious to find out what blog platform you’re utilizing? I’m having some minor security problems with my latest site and I’d like to find something more safe. Do you have any recommendations?
With havin so much content do you ever run into any issues of plagorism
or copyright violation? My site has a lot
of exclusive content I’ve either authored myself or outsourced but it appears a lot of it is
popping it up all over the internet without my agreement.
Do you know any solutions to help reduce content from being stolen? I’d
genuinely appreciate it.
Before leaving your website, I simply want to express how much I appreciated the valuable information you consistently provide to your visitors. I look forward to returning regularly to stay updated on your latest posts. Keep it up my friend! By the way I am a Senior Researcher @ (Clickmen™)
After all, what a great site and informative posts, I will upload inbound link – bookmark this web site? Regards, Reader.
I love your blog.. very nice colors & theme. Did you
design this website yourself or did you hire someone to do it for you?
Plz reply as I’m looking to create my own blog and would like to know where u got this from.
cheers
I do not know whether it’s just me or if perhaps everyone else experiencing problems with your website.
It seems like some of the text in your content
are running off the screen. Can someone else please provide feedback and let me know if this is happening to them too?
This may be a issue with my web browser because I’ve had this happen before.
Appreciate it
Wonderful website. Lots of useful information here.
I am sending it to several friends ans additionally sharing
in delicious. And naturally, thanks in your sweat!