NVIC Applauds ACIP Appointment
The Fractured Fairytale of Autism

Denial: How Refusing to Face the Facts about Our Autism Epidemic Hurts Children, Families, and Our Future

“These discussions do not point to a disability, but highlight a different way of uDenialnderstanding and interpreting the world. These people share personal experiences, where these are not necessarily interpreted in a negative way. The focus is on neurodiversity, not on a disorder.”

Imagine reading 700,000 Reddit posts and drawing broad conclusions about autism. We suggest the researchers track clicks on Sesame Street, Thomas the Tank Engine and Oreo unboxing Youtube videos to glean additional data. When Secretary Kennedy spoke on live TV about the 25+% of people with profound autism and the list of "nevers" we know all too well, the outcry was deafening. Even from organizations like ASA which was founded back when autism was indeed called a disability. 

Nothing About Us Without Us goes both ways. Our Dan Olmsted and Mark Blaxill wrote the book on the negative impact of airbrushing our loved ones out of the autism picture. Denial: How Refusing to Face the Facts about Our Autism Epidemic Hurts Children, Families, and Our Future

Read the full reporting at Neuroscience News.

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Summary: A massive study of over 700,000 Reddit posts has given researchers a unique window into the lived experiences of autistic individuals, revealing a focus on community, personal interests, and coping strategies. Using natural language processing, the team grouped posts into recurring themes like music, food, friendships, and emotional challenges.

Rather than pathologizing autism, the conversations emphasize neurodiversity and celebrate different ways of thinking. The findings highlight the emotional toll of masking behaviors and call for clinical approaches that reflect the real concerns of autistic individuals.

Key Facts:

Massive Dataset: Researchers analyzed over 700,000 Reddit posts to understand authentic conversations in autism-related communities.
Themes of Connection: Common topics included favorite music, food, social interactions, and navigating neurotypical expectations.
Call for Change: The study urges clinicians and educators to prioritize neurodivergent voices and move away from deficit-based models.

Source: University of Trento

A group of researchers from the Department of Psychology and Cognitive Science of the University of Trento, together with colleagues from US and British universities and departments, delved into the world of people with autism through their conversations, learning about their interests, the topics they discuss, their needs, tastes, and experiences.

They worked from the ground up, examining discussions and narratives to shed light on things that usually remain unknown to outsiders.

The results of their work are described in a paper published by Autism Research: “Autism Spectrum Disorders Discourse on Social Media Platforms: A Topic Modeling Study of Reddit Posts”.

They examined more than 700,000 posts from all over the world that were published anonymously on Reddit in discussion forums on autism. A huge amount of data that the researchers analysed with natural language processing techniques that have made it possible to group writings by macro-themes and thematic content.

The researchers found out that among the recurring topics in these forums are music, favourite foods, and social life. In fact, some ask for suggestions on how to make friends, while others talk about musical preferences or eating habits. In general, the participants have a supportive attitude towards each other.

The results of this study offer an unprecedented look at the online conversation on autism, which calls on a different approach to neurodivergence, one that doesn’t view it as a disadvantage but rather values differences.

Gianluca Esposito, the author of the study, explains in this regard: “These discussions do not point to a disability, but highlight a different way of understanding and interpreting the world. These people share personal experiences, where these are not necessarily interpreted in a negative way. The focus is on neurodiversity, not on a disorder.”


In recent years, much has been written and said about autism, often underlining its symptoms and difficulties. But what emerges from this work is different.

“We started from the analysis of spontaneous daily life posts to investigate what are the most recurrent topics of discussion and what are, potentially, the more or less functional strategies that people put in place to cope with challenges,” says Esposito, who adds: “It is important to understand that autism is not a cognitive disability. Many people still believe this stereotype, but years of research and clinical practice demonstrate that this is not always true.

“There are a number of neurodiversities, which must not be understood as a set of difficulties but as a set of individual identities: a variety of ways of thinking and perceiving the world that can offer valuable contributions to society and enrich our understanding of human functioning.”

It is important to note, as the article reads, that the discussions among the participants also reflect a deeper challenge: an effort to tune one’s interpersonal feelings and emotions with external social norms.

They somehow would like to mute the desire for authenticity in contexts where societal expectations might require masking or adapting behaviours.

This is highlighted by Alessandro Carollo, one of the authors of the work: “One aspect that impressed me a lot is to see people with autism suffer and struggle when they are forced to conform to neurotypical standards.

“The difficulty is not so much related to what we think is a symptom of neurodivergence but to the request to standardize, to mask their identity in favour of what is considered a neurotypical behaviour.”

What will be the clinical impact of this study?

“The collected data – clarifies Carollo – can help design educational actions to address the real concerns of people with autism, that must be taken into account in general and that may not always emerge during therapy or more conventional research protocols.”

Comments

Benedetta

Actually while I am listing the decades -- that would be the 80s . My kids were in the 80s. At the time they were giving Hep B shots to the homosexuals and giving them all AIDS, but hey, that one guy that was a airplane stewardess, flying all over the country and so sexually charismatic was what they were saying.

Which is about as ridiculous as neurodiverse.

Benedetta

high-functioning?
I probably have one. My daughter was valedictorian of her class. She also has bipolar. She needs support, she knows she needs support so who are these guys that drones on and on at how wonderful and neurodiverse it all is?

I say those with in the government and pharma that know what they did. Thye know they caused brain damage in 100 percent of the kids in the 90s and on into the 2000s and on into the teens and on into the 20s.

They came up with this plan, and yes, they are able to drag a bunch of these high functioning people that their policies damaged go along with their propaganda.

I'd like some one to FOIA and find some emails were they are planning and scheming to cover their corrupt, evil little selves.

Gayle

I also have a son who is in the middle range functioning level like Jonathan's daughter Flora. He can verbalize his basic needs and can do simple things around the house like help with laundry, make his bed, help take out the garbage, set the table, clear the table and so on. He could never participate in a Reddit exchange like those with much higher level functioning can do. Comparing them is like comparing apples to oranges and they are not in the same category. The media likes to emphasize the higher functioning autistics and just pretend the rest of the middle functioning don't exist. This hurts our children/adults who desperately need medical researchers from around the world to find the correct medications that will cure our neurologically damaged children and adults that is long overdue for them and their exhausted and frustrated families.

Jeanne J

I think it is time for autism to be separated into two groups:
1. The neurodiverse group, who advocate for nothing about us, without us.
and
2. The group that continues to require lifelong support, of whatever kind (medical, behavioral, adl's or activities of daily living, housing, etc.) whose motto should be nothing about us, without out those who best know and love us.

Kathryn Z Berg

I think it is time to stop avoiding the truth!

I was appalled at the response to RFK Jrs press conference. Sometimes people will do anything to be offended. Perhaps they should be considering how offensive they are being to the parents and their children (Now many adult children) whose kids really CAN'T function and take care of themselves.

I wrote a blog post on the topic and a follow up post as well. If you have a few minutes, give it a read. There is also a link to his Press Conference in there, just in case you haven't seen it.

https://www.lotushomeopathy.com/autism-toxins-and-the-truth-we-avoid-part-1/

Jonathan Rose

But of course Reddit posters are a grossly unrepresentative sample, because low-functioning autistic individuals are not capable of posting on Reddit. My younger daughter Flora is mid-functioning, she can verbalize her basic wants and needs and she can perform simple jobs, but she couldn't participate in a Reddit exchange. So the discussion is dominated by those at the top end of the spectrum, for whom autism may indeed not be very debilitating, but they make the big mistake of assuming that all autistic individuals are just like them, and they ignore the existence of those who are more seriously disabled. In that sense, the neurodiversity movement is grossly ableist. It advocates policies that benefit the high-functioning but disregard the needs of the low-functioning. My older daughter Jennifer made this point in his book "It's Not a Perfect World But I'll Take It," and she was slammed online for not following the neurodiversity party line.

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