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pavelito
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p/autism
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2/27/2025, 8:50:57 PM
My story
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saarnok
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10/25/2025, 12:00:21 AM
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I only really know about a hundred years of my family and including families we were closely associated with, probably less than ten thousand total people. None of them had autism. None of them vaccinated or used painkillers. Three of my grandkids have autism. First generation using vaccines and painkillers. Lucky. Probably none of them will require lifetime maintenance, but one is definitely possible.
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rusalka
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4/6/2025, 1:51:32 PM
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[deleted by author]
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pavelito
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4/10/2025, 6:55:36 PM
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Great point Rusalka! And you can use my pocha to gather others if you would like. I am open to it! Also, if you would like to share perhaps your story, or how it was growing up and how it is as an adult would be absolutely awesome!
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rusalka
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4/13/2025, 4:38:51 AM
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[deleted by author]
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thoughtcriminal_1984
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3/23/2025, 10:00:13 PM
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Sorry not read everything yet... but have you seen/heard the telepathy tapes yet?
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lemonhelmet
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4/6/2025, 12:45:46 PM
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i saw them, and as a mother who really had to step up to help my son, I think those findings are not just completely useless to us but are even damaging. Spending funds on that research as well as romanticizing autism ( as they do for decades in different forms) ...i fail to see how those findings could be helpful
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thoughtcriminal_1984
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4/6/2025, 12:52:17 PM
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Why do you think so? I think those findings are not just completely useless to us but are even damaging.
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lemonhelmet
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4/6/2025, 1:06:42 PM
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Romanticizing autism—especially by only showcasing the “good,” “incredible,” “mild,” or “successful” sides—can be deeply damaging. Here’s why: 1\. It Erases the Full Reality Autism is a spectrum, and while some autistic individuals are high-functioning or have extraordinary talents, many face serious challenges: communication difficulties, sensory overload, meltdowns, self-injurious behaviors, limited independence, and more. When the narrative focuses only on the “quirky genius” trope, it ignores and invalidates the lived experiences of those who struggle. Why it matters: Families, caregivers, and individuals with more intense support needs may feel unseen, dismissed, or even shamed because their reality doesn’t match the picture-perfect version of autism portrayed in media or social platforms. 2\. It Creates Unrealistic Expectations If the public believes autism equals savant abilities or minor social awkwardness, they might not understand or accommodate people whose autism presents differently. This can result in less empathy, fewer services, and more judgment. Why it matters: Children who don’t meet the “brilliant and adorable” standard may be seen as "less than." Adults may be overlooked for support because they “don’t look autistic enough.” This kind of misunderstanding can delay diagnoses, reduce funding for services, and increase stigma for those who don’t fit the stereotype. 3\. It Silences Autistic Voices Romanticized portrayals often speak about autistic people rather than with or by them. They can be used to make neurotypical people feel inspired or comforted, rather than centering the needs, rights, or perspectives of autistic individuals themselves—especially those who are nonspeaking or require high levels of care. Why it matters: True advocacy listens to the voices across the spectrum, especially those who are often left out of the conversation. Romanticization tends to uplift only the “acceptable” narratives. 4\. It Can Be Harmful to Mental Health Parents, educators, and autistic individuals themselves may internalize these idealized images and feel they’re failing when things are hard—when a child can't communicate, when there's aggressive behavior, or when no progress is visible. Why it matters: Mental health suffers under unrealistic standards. There needs to be space to grieve, to be angry, to struggle, and to ask for help—without shame or comparison to an idealized version of autism. 5\. It Undermines Advocacy and Policy Change If autism is seen as simply a “different way of thinking” that leads to innovation or success, why fund early intervention? Why fight for better special education services, accessible workplaces, or lifelong support? Why it matters: Without an accurate, balanced portrayal of autism, public policy will never reflect the real needs of the community. Romanticization makes it harder to secure resources and support for those who need it most. In short: Romanticizing autism dehumanizes by idealization. It hides the hard truths, flattens the spectrum, and excludes the most vulnerable. Compassion, awareness, and advocacy must embrace the full range of experience—celebrating strengths and recognizing challenges.
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thoughtcriminal_1984
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4/6/2025, 2:04:21 PM
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I haven't read all of this... but it appears your problem/issue with these tapes and the points in general, are based on your own emotional journey... I get that, but that also doesn't negate or discredit these people and these tapes or what it they highlight, just these tapes do not negate the struggles of other in a similar situation.... It comes across as "that's bad, because I can't do this or my problems aren't being noticed or dealt with"....
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lemonhelmet
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4/6/2025, 2:05:53 PM
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so can you tell me what are the benefits of that research for us in real life?
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thoughtcriminal_1984
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4/6/2025, 2:07:40 PM
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Who is "us"? Because I'd take it to mean people/humanity, I assume you just mean people you deem on the spectrum?
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lemonhelmet
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4/6/2025, 2:09:41 PM
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i already said ... people on the spectrum yes...how is it helpful?
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thoughtcriminal_1984
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4/6/2025, 2:15:44 PM
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In a simple sense, those not on the spectrum will likey take greater interest in people on it, they will view those people and their problems from a different, more positive, more encompassing and hopefully more fulfilling way.... An FYI... I think I'm on.the spectrum also, so I'm not speaking from a place of ignorance here. 🙏
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lemonhelmet
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4/6/2025, 2:16:58 PM
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i don't understand that. Can you elaborate?
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thoughtcriminal_1984
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4/6/2025, 2:22:39 PM
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Currently I suspect from my own knowledge and from what you're highlighting, people on the spectrum currently don't get the required help, attention or support they need, these tapes, will I believe help draw more attention and resources to help those people, that will be positive, since currently they don't get enough.
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lemonhelmet
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4/6/2025, 2:29:16 PM
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Severe autism receives little to no meaningful support. While the level of help can vary depending on where you live, true inclusion is often not an option. Many experts still don’t fully understand what’s happening in the body and are reluctant to think outside the box—unless it’s something relatively harmless or appealing, like the tape method you mentioned. My core belief is that autism is being fundamentally misunderstood. As a result, the research that truly needs to be pursued isn’t happening. Over the past 20 years, I’ve seen many studies like this—promising on paper but with no real impact on everyday life. They may be well-intentioned, even comforting on the surface, but ultimately, they offer little more than false hope. This is one of many in line I have seen in 2 decades that are a fantasy.
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lemonhelmet
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4/6/2025, 2:32:29 PM
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and that is a pragmatic experience and reality
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thoughtcriminal_1984
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4/6/2025, 2:37:38 PM
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It's from a sample size of 1 I'd guess... and one who by your own admission has been in the trenches taking all the emotional lumps that goes with that.. I suspect things have improved markedly for people on the spectrum in general and like I said, things of the nature of the tapes, can and will help improve them further... 🙏
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lemonhelmet
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4/6/2025, 2:40:36 PM
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what semple of one? i am the fckng president of the gathering of parents. There is thousands of us... wtf are you talking about? obviously you have zero idea
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thoughtcriminal_1984
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4/6/2025, 2:45:06 PM
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Oh, sorry Mrs President... 😐... you must be shite at the job if you've been unable to make any changes ae... 😆🤷♂️🤦♂️
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