Видео

Most of us do not like the term SEVERE autism but you of course don't care what we actually autistic people think.

This presentation was interesting and informative. One thing, though, that is so important when considering the cause of behavior, particularly in regards to autism, are sensory needs. With the toothbrushing example, Dr. Haq provided possible causes for the person’s behavior, including that something about the consequence is more reinforcing than the person having good dental hygiene and positive social relationships. We know that people with autism process sensory information much differently. For an autistic person, experiences that are totally routine to others may be overwhelming or even painful. In this case, sensory needs should be a top consideration. Is the “minty fresh” feel or flavor abhorrent to this person? Is the toothbrush too hard (my dentist recommends soft toothbrushes for everyone in general)? Is too much or too little pressure used? Do they have oral sensitivity? Is the water left running while they’re brushing, causing too much noise in a room where sounds can be amplified? Considering sensory causes for an autistic person’s behavior should be at the top of the list. I am not autistic but I have misophonia, which is when ordinary sounds cause a strong reaction, including anxiety or anger. For me, I am extremely bothered by eating sounds, and they make me irrationally angry. If it becomes too much, I have to leave a table because it’s so upsetting. If someone did an FBA on me without knowing this, they’d probably come up with one of these functions: she wants to escape the demand of having to sit for such a long time or converse with others; she could be attention seeking because she looked upset and someone will go check on her or ask if she’s ok when she comes back; I saw her scrolling on her phone in another room, so she could have just eloped to access a tangible. None of that would be the case, and if I was on the phone, it would just be to help myself become regulated again. Here’s another example that might be more relevant to most people. You’re driving. You made a wrong turn, ended up in a remote area, and have no cell service. You’re already running behind. The radio is on, and your kids are singing along loudly. It’s a bit hot and you haven’t been feeling well, maybe coming down with something. You turn down the music and snap at the kids to calm down, which you rarely do, but you were overwhelmed with sensory input. That overwhelm happens much more easily and it’s felt more strongly for people with autism, and if they don’t have the skills to handle their reaction, they have a meltdown, which could include aggressive behaviors. Please, please consider the sensory needs of each person. Think about all eight (yes, eight) senses and what could be causing overwhelm in the environment. It might seem innocuous to you, but consider a situation with your personal sensory nightmares (nails on a chalkboard, being too hot for too long, etc.) and being forced to deal with exposure to them daily, perhaps multiple times a day or even for hours. You wouldn’t just get over it. Getting a reward wouldn’t make it better. Being praised for enduring it wouldn’t make it better. You would probably explode or implode in some way. That was much longer than I expected but everyone’s brain and body is completely different, and we have to respect and consider that for the autistic people we want to help.

Why would you ask a man who's career, wealth and reputation depends on vaccines being "unquestionably safe" about a possible link between vaccines and autism? It's a bit like asking Boeing about was there any problems with their planes recently.

Thank you for this, you make a really complex topic approachable. With a nephew who is verbal but severely autistic and a family that has multiple generations of learning 'disorders' I related to alot of what you said. Especially the umbrella image. As an Occupational Therapist studying The structure and function of brain morphology differences in ASD I have struggled with the fact that many refuse to view those that have structural and functional changes as being whole people but infer these huge so called facts out of not even half cloth but one or two primed outcomes where they seem to have actually made the result come out the way they want.

I'm so glad he talked about Samoa. Excellent matter to discuss.

I have both Ehlers Danlos (hEDS) and autism (type 1 / aspergers).. I also have celiac too. And a corn allergy.

When hes talking about not having the umbrella that really makes sense to me. If i go to a crowded bustling place, i will be completely worn out in 20 minutes. Things like high pitched noises or loud noises really drain me. I also suspect just looking at people, esp in eyes, is also somehow draining for me. A "full time job" for me is less than 25 hr per week because of my stimulus sensitivity.

IMO the word "autism" has become quite like the word "fruit". "Fruit" is a single word that accurately describes both a watermelon, and a lemon, and in terms of biological functionality, there's no difference between a watermelon and a lemon, yet culinary discourse doesn't break down at the mere mention of the word "fruit" simply because it's vague in nature. On the other hand, we've had several hundred thousand years to learn in detail about fruit, while research and discoveries into neurordevelopmental disability is ongoing, and relatively recent in human history. The desire for less vague terminology and discourse as to the implications that terminology has for the patients impacted by them is reasonable, and those discussions should be had, but I'm seeing a trend of diagnosed autistic people being held in contempt merely for describing themselves using their own, CURRENT, diagnostic criteria, to the point where professionally diagnosed low support needs autistic people, who have been clinically observed as exhibiting multiple significant functional impairments, are being treated as though their being diagnosed under the current professional diagnostic criteria constitutes an elective assumption of identity on behalf of the patient that intentionally challenges the legitimacy of autistic people who are in need of more resource-intensive and complex suites of solutions.

U gotta manage the methylation and low vit b7 is known to cause seizures

34:40 - Disability assistance workers are severely under-compensated, but mentioning warehouse clerks and fast food workers in the same breath as "easy, no overtime jobs with better compensation" as though they are equivalent is an absolute farce, especially when the former of those two typically requires the completion of certification courses to operate multiple classes of powered industrial vehicles.

If you came to believe that your child has more ability then ‘the world’ realized before, it’s hard to step back… If you are a facilitator who does the magic, and have to admit you probably fooled people without knowing, also very hard…

The problem is that other states such as Georgia will "NOT" pay 😢.. These school systems know they cannot offer what you have. And they do not have to. How can a parent with limited funds get their school system to pay to send their severely autistic child to your school? Many parents have to sue and spend thousands of dollars in order to get into Kennedy Kreiger. I wish you all would start taking health insurance or offer scholarships.

Endocannabanoid system makes the most sense to me. Why are autism and addiction clinical and academic studies not covering this?

The schedule - 1 designation came in w Nixon- in order to have something to arrest hippies (aka anti war demonstrators) and people of color for- widespread use in America since before the revolution. White people of the right social status didn’t get prosecuted to anywhere near the same degree. As a person mid diagnoses in my 60’s the notion that somekne would have to demonstrate out of control behavior in order to access medication that helps them is terrifying to me in its’s Dr. as overlord overtones. Please don’t advocate for “suffering means testing” to be part of cannabis access. That is utterly demoralizing to even hear anyone suggest it. Kind of like how women have to be dying of their non viable pregnancy before they can access an abortion. Whose side are you guys on???? Your kid only and never mind about everyone else? Ouch. And - on the other hand terrific info and thank you for fantastic content otherwise.

Hi, I am the mom of an 18yr old severely autistic, non verbal, young man who also has seizures. I live in Villa Rica, Ga. My son is severely aggressive and he may never be able to live in a traditional group home. I worry every day about his future. I definitely want to participate in some type of national organization that wants to fight congress on these laws. They need to change. Also, they need to create ICFs for some of the severe kiddos that cant live in a group home. The money is there. All advocates here in Georgia push for all to live in the community. But there is no community!!!! They are so proud of closing all the ICF facilities but they dont have anything in the community to take the place of the facilities. All I hear is facilities are bad and abusive. But whats the alternative? Then I hear crickets. Im ready to go to Washington and demand change. Its obvious that the states dont give a damn about this end of the spectrum. I know parents that are getting beat up by their aggressive profoundly autistic kids every day! Like you said, they allow senior living facilities, why not profound autism facilities???? I wish profound autism could be taken off the spectrum, given a new diagnosis code, and treated like a brain disorder such as traumatic brain injury, or even alzheimers. I wish all autism parents would come together and flood tic toc and you tube with videos of our life with severe autism. Show the entire world how we are living. The meltdowns, aggression, self injury, poop smearing, head banging, property destruction. And take our kids outside and let them stem and flap everywhere and show the world what profound autism is. Make them so uncomfortable that it makes CNN and MSNBC take notice. And take all that footage to congress and sue for profound autism rights. Im ready to make change. Im tired of begging. The kids on the low and mid level can keep the spectrum and integrate and make autism their superpower. Profound Autism needs its own platform and needs its own funding, housing, facility, and community. Im ready to put profound autism on BLAST!

We really did not need the translation, but thank you for trying, but most of us really do understand him very very well

Really helpful information. Thank you for share ❤

Eileen you are indeed an inspiration! Thank you for all you do and speaking your story and experiences. There's so much misinformation out there regarding autism nowadays. It makes me happy to know that there are people like you speaking out.

INSAR is discussing and presenting on profound. Autism this year in Australia. Video footage of Charlie annd Eileen eas used bt Professor Matthew Seagel from Harvard. So slowly the Revolution is happening. Don’t give up.

Elopement in public. What helped after some very scarey situations for younger child. Wrist to wrist harness. Labels inside clothes with name and phone number. Sticker on the childs back with name and phone number. Even writing phone number on the childs arm with a marker pen. My older child didnt elope but would wander off sowe would agree to meet somehere if separated.

You talk about wanting to start a revolution. What about one that demands Charlie and others like him can go out in public, be himself, and do what is natural to him without being shunned or treated like a problem? One where behaviors like his are not criminalized, one where in-home caregivers/DSPs can be provided so parents can get the help they desperately need? Where decent wages can be paid to said caregivers/DSPs. One where helping your disabled neighbors is something obligatory and rotates, similar to jury duty, so that way families don’t have to be isolated. I don’t think bullying parents is the answer, but I don’t think completely disregarding the words of low-support needs autistics who wanna help our high-support needs brothers and sisters but may not agree with your actions is the answer either

Also when I write comments I get attacked. Was told I didn’t know anything about autism.

Level one shouldn’t have the same name. Thats the problem. It should go back to Aspergers except with a different name because of the natzi thing. They are also trying to erase classic autism and level 2.…. Its not the same thing

Listened to this podcast episode last week and watched again on RUclips this morning because there are so many amazing points being made - These women are my heroes! I love Jackie's point about the view that our kids are not entitled to housing. My son is 16 and at a transition presentation I recently attended I learned that the State's stance is that when they are adults there are things they are "eligible for but not entitled to" that are basic human needs. It is just such an affront - who is the social safety net for if not our ID population? I guess there's not much profit motive so to Jill's point, where are the economists? We need to look at how congregate housing can enhance the larger community and is a viable option economically when looking at housing/programs for profoundly affected individuals . I would like to get rid of that "eligible but not entitled" notion completely for basic needs like housing, care, food, etc.

Hello, I realize i’m reaching out a bit late with this post, I just ran across your channel. My 5yo son is non verbal with severe autism. We deal with the same struggles you mentioned. Do you, or Dr. Wong, know of a registry in SoCal with dentists that specialize in autistic children?

Thank you all for making these videos. They're very informative.❤

Thank you for putting on you tube

Very good presentation and cool guy👍🤩

Cool guy 😎

L1 adult autist here, THC is a valuable tool for interoception and social difficulties.

The parallel with war and cancer is great. We would not have a War acceptance or Cancer acceptance month.

Thank you Jill for alway being blunt about this horrible disorder. We need cure and noone is doing anything for that.

I was seriously impressed by this presentation but it actually fails to take three things into account : 1) regressive autism. At one point she states children are born with it but there are many many cases where children are meeting their milestones without concern and then suddenly regress, so the birth theory doesn’t actually hold water for all cases 2) I understand measurements have to be taken somehow for studies but we now know, and since this was recently published it’s known during the time of this presentation that autism isn’t an intellectual disability at its core, it’s a motor planning and sensory disability, and finally the quick dismissiveness of vaccines. Im okay with her actually believing this if the facts go in that direction but no evidence was given to that end, it was just a closing blanket statement made. When there is actual logical reason to investigate here because, at the exact time all her graphs show the cases rising, that is when more vaccines were added to the childhood schedule. It lines up with her graph. Overall, I do think it makes the point of true increased prevalence of autism over time that isn’t explained by under diagnosis of older populations. Important work.

Jill, are you still interested in recording a podcast episode together (this is Matthew Crome). Glad to see Tom McKean again!

Cannabis makes my Asperger's and adhd worse, how about that. Couldn't hold a job down, interaction with people was more difficult even two weeks after the use. It must be specific cannabinoids /strains, not just your high THC stuff. CBD alone was not effective either and made it slightly worse after a few months. So it's worth a try but don't get too excited over the hype.

Is it possible to ask for a reasonable accommodation for someone to live in a closer ICF? Perhaps using the reason of needing a certain medical provider.

Autism wasn’t rare in the 70’s, they just didn’t understand as much as they do now, which is why fewer were diagnosed.

Thanks for including the Northern Ireland study.

This is interesting to me as I'm planning on working with people with severe ASD/IDD, and though I've never witnessed a seizure in any of my clients I've actually had seizures myself (I have very mild ASD/Asperger's and a luckily very well-managed seizure disorder). I had a grand mal seizure in 2022 which was very scary, and have had several partial complex seizures since then. Luckily I don't meet any of the risk factors for SUDEP. Still I need to know all of the basic safety procedures for a grand mal seizure both in case it ever happens again or I have to deal with a client who has epilepsy. SUDEP sounds incredibly tragic - a lot like SIDS, there's just no way to know beforehand.

Autism diagnosis should be considered a neurological disorder and paid under medical benefits not mental Healthcare.

Severe autism? You’re either autistic or not, there’s no such thing as severe autism. There ate varying support needs but not varying levels of severity. 🌻

Woah why isn’t any of this ever discussed?

Im a 46yo lady,adult with asd.i use medical cannabis. Its been a game changer!!!!

Virginia had a bill in this last legislative session to try to gather data about SUDEP. The bill failed but it would be helpful when drafting a bill for the next legislative session to have some thoughts from medical professionals about how to draft a bill that would gather the necessary data. It would also be good to have uniform draft language for bills so other states can address with legislation and we can start to gather more information/data on SUDEP.

I'm an aspiring autism researcher/professional who has Asperger's myself (I'm currently getting my BA in Psychology and planning on getting my Master's or PhD) and I 100% support housing like this for people with severe ASD/IDDs. I understand the hesitance when it comes to something that looks like institutionalization, but that's clearly not what's being proposed. As long as we have the professionals and infrastructure in place to make sure no abuse occurs like it did in institutions (which is easier said than done especially given BCBA/IDD professional undertraining and burnout), this will only benefit people with severe autism and other severe IDDs. Also I have actually worked in a vocational gardening program for people with a wide range of disabilities, which helped people with mild disabilities like me as well as people with much more severe disabilities, so I know the farmstead-type program is very helpful. The idea in the neurodiversity community that "everyone can function in the community" is just plain false and does not apply to people with even moderate IDDs. (I've worked at a summer camp for people with moderate to profound IDDs and it's clear that this population needs very specialized and intensive care.) Also I respect Christian Bale as an actor (though he's known to be a bit of an ass) and hope he can apply his work with foster care housing to autism/IDD housing.

I can boldly say with the help of #DrOria herbal medicine I was able to get rid of my Epilepsy completely without no side effects.

Interesting, I have NF1, Dispraxia, ADHD and according to some doctors, a mild ASD.

You need to move away from the Autism label altogether. This discussion is primarily about Intellectual Disability in combination with several other developmental disabilities many of which can't even be diagnosed because of the severity of Intellectual Disability. How do you assess the severerity of the autism when someone doesn't speak or understand what you're asking them? Using the label Profound Autism is not only inaccurate it also suggests that all other Autistic people are not ever going to need support because they aren't really very autistic at all, which is absolute nonsense. The result would be to deny that people with any developmental disability are in fact disabled at all, and would ensure they will never be able to access support or health care that they need and have a right to receive.

Is it Possible to get access to this presentation? I am preparing for a meeting with an international government and would love to be able to study this presentation to help with my argument towards increasing funding for research and autism care.

This story is heartbreaking 😢