Відео

As a high functioning autistic person who had a medical procedure two years ago done where I had to stay overnight in the hospital and because one person messed up and was rude. My life has not been the same same for the past two years.

As a high functioning, autistic adult getting ready for university and potentially moving out I feel for you. I’m having difficult days too. I still need a lot of support, but I think I’ll be able to get out of it. Not get out of autism but get out of needing so much support hopefully in the end, good luck guys.

So wrong it's not even funny..there is no epidemic..autism is a disability you are born with and treating it as an epidemic will do more harm than gold

The doctor went on and on about how dangerous measles was when he was a child. Yet I am the same age, and in the 1960s EVERYONE in our grade school got measles -- NO ONE died. We all recovered. It could be explained by the theory that our immune systems were stronger back then.

Your son sounds just like my 15 year old. My son would probably not be able to live in a group home either, so I really have to figure out his future when I'm gone, and that is overwhelming and worrying. I'm glad I'm not alone in my experience. Thank you for sharing your story.

It's so hard! I’m in the same boat too and it’s heartbreaking at times to not know what’s wrong…. :(

Your situation is mine almost to a T! Non-verbal and self-injury and aggression towards others and objects. It’s so hard! Hang in there! My son is about to age out of school and I’m terrified for his future and ours. ((❤))

I have a son with several autis Too

We get it! ❤ Son has 24/7 2 to 1 support, sometimes 3 to 1 for safety. You never see this type of autism represented in films or on TV.

I was born in June of 64. My mother had ECT throughout her pregnancy with me. Could that be a reason I’m autistic?

This is from his wife n THANK YOU for sharing my Life ! Our daughter is 29 . She is all of what you stated with your son n lives in a group home so we can have kind of a life together n have a relationship with our son. Worry worry all the time n consumes me . Not best situation but choices for her are slim . She needs higher level of care but it is not there n keeping her at home is not realistic as I’d be in a special care facility myself. We can talk n talk like we are now but our options remain the same. Please vote for someone that will not take away what little services that are out there.

Thank you for sharing your story. My son has also been in and of Hospitals since age 5 (he is now 22). He went in and out of the hospital or psych hospital more than 5x during Covid besides refusing to shower for 7months. We need people to understand our kids aren't like the people shown on TV. I'm often asked what my sons unique talent is. People have no idea what severe autism is. Thank you

Maybe it’s my autistic PDA but I found the questions about specific details to be a bit invasive. I don’t object to the questions being raised, just the way they were raised. Maybe something like “if you’re comfortable sharing with us what the dosage was that you found effective” 🤷🏽‍♂️

Relative wants to ACH gift monies into my sons bank account, can we then transfer those funds to CalAble account noted as “gift monies”?

I love how this woman has come to us in this video to speak truth. The medical community comes at us with so much garbage and ignorance about autism. Profound severe autism and classic autism do not allow our children to have a future they can work toward. But there are some things we can do to assist in their futures. This is the best video I have seen on this channel. We're all tired of the lies and arrogance against us and our children. My child and I have our own nightmare story dealing with the medical community. It's disgusting how we are treated. It's like we are not important enough to help. The content of this video and the extensive lies told from agencies is exactly why many of us no longer trust the medical and science communities. My heart goes out to this mother and her family. Thank you for sharing her video.

Hello! I am an autistic adult. I was confused when you said you would want to prevent autism in every child. Did you really mean that? Entirely and across the board, 100% of cases?

There might be a lot of pressure put by the compagnies to keep the same narrative and not include causes related to potential toxic chemicals....

It really helps me interrupt my looping and perseverance. It eases my sibs

The spectrum needs to be broken up. I really think families with, and advocates for, severe autism, need to join together to break up the spectrum. The creation of the autism spectrum may have made sense back in the 1980s, but the spectrum has gotten so broad, that an autism diagnosis no longer means anything. Neurodiversity is bullshit, and only serves to hurt the most severely disabled. Your kids get it. I'm proud of them.

Thank you for sharing in a powerful way for what we need for our kids. I am moved to tears. There are so many similarities between your story and mine. Life would be so much better if we can have multidisciplinary health care systems set up to care for our loved ones under one roof. Sending hugs🙏

No multidisciplinary teams for adults in Arizona, either. And the gaslighting is the worst.

I’m so sorry. We just don’t have an educated medical community.wishing you and David some peace.

Speaking of misunderstood, this is a social issue. A social psychologist is exactly what we need.

There is a big difference in effect of CBD and THC depending on how it is introduced to the body. Smoking pretty much sends everything straight to the brain, like a mule kicking you between the eyes. It is a mostly cerebral effect overall, and it is very fast. Ingesting it is a completely different experience, even though it may be the exact same strain of cannabis. Edibles and tinctures take anywhere from 30 minutes to over an hour for a person to even begin to feel the effects, and the effects are a complete body experience that the mind is invited to come along on. Many people find that edibles can be overwhelming and scary to them because of the whole body experience. Most I think because they take too much early on before they feel effects and then suffer the consequences of feeling overwhelmed. While I don't know with certainty, my current theory is that, because of the method of being assimilated that smoking mostly affects cerebral cannaboid receptors whereas the edibles affect and attach to the myriad of cannaboid receptors throughout the body. I have found that I get better results for pain management from eating CBD, smoking it does next to nothing. With THC I get better experience and results from smoking, eating is okay but doesn't provide the effects I desire.

There are only children to accomodate😢

Decade or more ago, he refused my brain for not fitting his agenda. I think it was the 1950's date of my profoundly autistic low-grade imbecile diagnosis, or that i didn't remain static IQ under 50. I don't plan to die soon but i was terminal at that time and wanted to help other autistics😅

I love how real this woman is. We have had the same experiences and there's no pretty way to tell the story. Thank you for your "real" talk.

I swear when they go to AI only robotic nurses we may finally get listen to

Blessings 🙏🏽🙏🏽

Dear God. I’m sorry this happened.

I’m sorry you had this experience with the medical establishment. I am an RN and I also have a 26-year-old nonverbal guy even I have had issues sometimes getting stuff done for him and I don’t throw the RN card out right away because I want to see how they treat a regular personand I’ve been in the ER when they’ve tried to give my child Haldol because he was “having a psychic break. He was in a lot of pain because he had just had a seizure and dislocated his shoulder. I’m lucky I’m in Northern California and have a few more resources that you have in southern Oregon, but it doesn’t change. He broke his kneecap a couple months ago. We were seeing a orthopedic surgeon and he comes in and tells me he needs to talk to me about my son‘s heart condition before surgery, he doesn’t have one. I don’t know who’s chart he was reading, but I was like no after that and he was having a freak out at the same time which didn’t help so we went to the other hospital and had a very nice orthopedic surgeon that did the surgery with ended a couple of days.

Why not offer the guts info and quit with the stories about diagnosis..we just needed the fscts, could've been..a 15 monute update. Research fail.

Gosh dsngit. If you are on social media, perhaps think Im absolutely un captivated. Turning over to boring, twice. This sucks, lets think of information that's important, yet when an autistic person watches..and snoring. Bore.

Very reasonable, I just realized that Mario updated his favorite way to tackle ED and it's crazy! Although what he previously talked about was pretty decent, it was difficult to follow, I just go'ogled the latest by Mario Volpstein, it's so much simpler and potent now!

Thank you for sharing the truth.

I deeply admire the bravery and resilience of these incredible women who have shared their personal journeys with us. As a mother of a child with severe autism, I understand firsthand the critical need for long-term planning that genuinely includes our families. The weight of care giving is immense, and while parents are often expected to provide unwavering support throughout their lives, it's vital to ask: what happens to our adult children when we can no longer be there for them? Our families deserve to be at the forefront of state and federal planning, ensuring a future where our loved ones are not only cared for but truly valued and supported.

This was quite a presentation. I don't think that the challenges and peril faced by autistic people can be resolved entirely through a shift in societal paradigms, as many debilitating characteristics will persist even all disabled people were fully accepted and understood by our culture without misconceptions, but it is a societal problem that health care professionals (excepting those with a specialized background on neurolodevelopmental disability) and the health care system as a whole isn't sufficiently equipped to help the most vulnerable among us in their most critical moments of need, especially when those in need may for no fault of their own perceive attempts to assist them as frightening or life threatening.

These behaviors are often a cry for help and it's heartbreaking for caregivers when we don't know what our children with profound autism are trying to communicate. They could have a toothache or they could just want to go to McDonald's.

Thank you for sharing the authentic realities of our families!

Thank you for this great webinar! Ive followed you on tik tok and look forward to watching more videos!

They also need to realize accomodations are a two way street. Sometimes they need to accommodate to others

I'm 7min in & you are my kind of honest Thankyou! Wokeflakes ruin everything! The level of vitriol I have received from this "community" is off the charts! No wonder people hate us if those are the loud, obnoxious voices demanding attention!

I'm tired of every personality quirk being seen as practically Level 1. Thank you for this.

As the parent of a profoundly affected child, thank you. This webinar was definitely needed.

I am now subscribed to this NCSA UA-cam channel because of Cyndi Wall’s critically important light-shedding here. I don’t view TikTok or Instagram, so found this especially eye-opening and definitely concerning. Thank you Cyndi.

I think that the recent fixation with re-framing disability related terms with positive implications is damaging the clinical practical usefulness of those terms... but that fixation is in response to a long running stigma that demands that disabled people explain themselves or validate their existence in some way, leading to narratives like the "autism is a superpower" cliche. Overall, a very interesting discussion. I don't want to downplay or legitimize the online hostility, but I think part of it originated from a "chicken or the egg" paradox where caregiving parents of high support needs autistic loved ones unexpectedly encountered people online who may outwardly appear hyper functional compared to their own autistic family members, yet call themselves autistic, and perceived them as non-disabled outsiders making a mockery of the struggles of their children by arbitrarily appropriating disability terminology, and wanted to shoo them away without learning more, even when many of these people were clinically diagnosed. This lead to the relatively higher functioning people forming their own communities online that developed echo chambers in which the toxic cliche of hostile "autism parents" as a supervillainous force that invalidates their struggles was free to circulate and escalate with minimal internal pushback. Nowadays neurodiversity content creators like "I'm Autistic, Now What?" are pushing back against the "evil autism mom" trope and did entire videos on it, but I don't think there was pushback early on because early- diagnosed autistic people of Level 1 and even some Level 2 who went through therapy and received services have reported getting online backlash from parents of more severely effected patients who get upset when they see people who can do things their own kids can't. In understanding some of those parents who HAVE done that, I think its worth pointing out that as the 24x7 committed caregiver of one or more family members who's requirement for resources to be provided with proper conditions is unlimited, I don't think its fair to expect them to take the time to learn about an infinite array of characteristic profiles beyond those that apply to them learning to care for their own autistic children, but those same parents also can't use their personal experience to proclaim themselves to be experts on autism in general, and then invalidate the diagnoses and challenges of anyone that doesn't resemble their own children. Even when these cases are relatively sparse it fuels the "evil autism parent" memes among online neurodiversity echo chambers. And online echo chambers occupied by relatively higher functioning people are going to be populated by people with relatively similar makeups, making messages spreading the sort of misinformation discussed in this article easy for them to take seriously, and get the toxic impression that all autistic people must be like them, but many who think that never had the chance to see that there really are people whose characteristic profile of autism, even while including slight or strong similarities to themselves, will describe people who will need extensive help with everything they do and do not do for their entire lives, and that their non-autistic caregivers merely changing their attitudes isn't going to change that. The result is large numbers of "normal" non-autistic parents and caregivers, as well as large numbers of "normal" autistic internet users who are mutually unaware of, or endorsing any of this, yet unexpectedly encountering heated nonsense from confrontational people who think they're "fighting for autism" but are invalidating the experiences of others, leaving them inclined to think "wow those (other) people seem unhinged".

I was late diagnosed with autism ADHD and intellectual disability. I'm level one autism but I always wondered why people are saying it's a difference and not a deficit. I think autism is a disability and not just a difference, but I'm one that always had it hard in school and work.

Off topic but what is the song at 40.30? The violin tune.

The Tik Tok discussions around definition of "disabilty" were troubling. One of the best definitions I heard was "under the most compelling contingency and with the most explicit instruction cannot perform the same activity as a peer"

What are your thoughts on the Asperger's profile of ASD? Do you think the merging of the two has caused a lot of the issues we are seeing? I don't like tuning into the more popular ASD creator videos because I agree that they are not exactly accurate and over generalize way too much (a fair number are trying to sell something...), but some of them seem to be describing a more Asperger profile presentation, in a valid fashion (usually), but get overshadowed by the inaccurate videos unfortunately.