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I am hydrating!!! 🩵

My child was evaluated last summer and they concluded lvl 2 autism with a PDA subtype. Currently in burnout, it’s 24/7 care. Outside of burnout, they thrive on being super independent. Needs change, and I think that is probably one of the most defining things about autism really. It doesn’t fit into a neat little box. My kid will destroy that box 😹

Autism Speaks is leaving Canada due to lack of need in Canada. I think it's more that we have lot abused autistic people getting lawyers for class action law suits.

I simply don't understand other parents, sometimes. I won't get into specifics of the difficulties my kid has had and still has, but suffice it to say they are "profound." Instead of rejecting "less" autistic people and their views (nonsense) I *highly* value their advice, as much of it has lead to better understanding of my child, a better relationship with them, and less stress in their daily life. I couldn't be more grateful for the autistic adults who strive to create this understanding. If it weren't for them I wouldn't know to always presume competence, which has made SUCH a difference for my child and their confidence. As well as helping me identify my own neurodivergence, and offering support and guidance for the specific struggle of being an autistic parent of autistic children. Truly a gift that we've been given, and I hate to see others squandering it.

I'm not a fan of Kaeylnn. Her frequent juvenile behavior creates a harmful caricature of ASD that make watchers think that autism engenders childish tendencies. Of course, she's admitted she does it to make money. I asked her, and she said she is paid by an organization to put content on youtube.

Adult diagnosed autistic with 2 autistic kids. The Telepathy Tapes really got under my skin. The irony of non verbal autists having words put in their months by their FC enablers suggesting all autistic people’s have to say is what we read in others minds. What if they instead were shown the innovation, insight and profound perception that has through history led to invention and progress. We the lonely individual at the back of the cave figuring out an arrow while the others socialise around the campfire from the dawn of time. Could not agree more that this distracts from offering real help where needed in favour of preventing autism as a superpower as seen so often in media presentations of autism. We have a voice and we can speak for ourselves. I for one and a profession screenwriter. Pls DM me as I am hired to write an autism show and your insights could would be most welcome.

So profound autism is just when person is autistic and also has other disorders such as an intellectual disorder or Epilepsy which required even more care than Level 3 autistic person with out these other disorders. I think profound Autism is really bad term as it causes a lot of confusion. Is this not problem for NT people that have really low IQ? Rhetorical question as I know is it is due my wife working with special needs kids. So why is profound when autistic person has this. Is just the autistic traits making more difficult to deal with the person that it would be it they just had IQ that was below 50? Anyone with IQ below 50 would need 24/7 care. People with an IQ of 90 struggle in this world.

when i was a kid in the 80s the term used to describe me was "a bit queer", then "weirdo" "freak" and much worse, i found out autism as a teen and thought "that's me but i have to hide it, that label is dangerous" - as an adult i a five year slog just getting hold of a medical person to tell me what i already knew. i really don't care what label is used to describe me any more. labels are only useful as far as they can be understood by two people to mean the same thing. if someone think that label means sheldon or rainman they aren't going to understand that I'm autistic too. i ask people what they know about autism, and always tell them they're not wrong, what they say is true for some autistic people, but no two autists are the same.

Despite many having an unreasonable dislike of labels, they are 100% required and no matter what those labels are someones always going to have a problem with them. Time to stop arguing about these labels and start discussing the real issues they represent.

You’re one hundred percent wrong.

I think there needs to be a more to the point discussion of the way that living with several conditions/states/situations impact your ability to deal with yourself, your life and the world with it's challenges and expectations. Having more of them isn't just adding the burdens and struggles of those together, they can also complicate and intensify eachother and seriosly limit the available means and resources for managing. AND the availability/ability of supposed help/support people to actually help you as they are not equipped for or have the understanding of the other things, or may push you into things to deal with one issue that makes the other ones much much worse. I am still not sure I'm autistic, but I live with cptsd, gender incongruence, treatment resistant depression, exhaustion (or even chronic fatigue issues) and a hormone issue related to a benign brain tumour. On top of that I am struggling to find a way to manage or leave a dysfunctional longterm relationship with a person I love and care for who do extremely badly by themself because of their own mix of issues. I am unemployed, struggle to find a new place to live and to find ways to recover from whatever of this I can actually recover from, and to manage what need to be managed. One or even two of these things might not have come with that many limitations, but with these many co-occuring I'm glad if I find enough balance, direction and ability to get through my days in relative comfort, and satisfied if I can get even a few things done around the house or my life that needs to get done. If I take good care of myself and make sure to live within my limits, with consideration to my needs, the struggles become invisible because I seem stable and "fine", and people around me start wondering why I am not living "normally" and putting more effort into getting a part time job and going out more. If pushed either by myself or others I fairly immediately lose my balance and start breaking down, and then people instead wonder why I am not in some sort of intensive care. If I try to take the middle road of taking care of myself while telling people around me why I am so careful with my resources, I instead get told that I would do much better if I stopped focusing so much on my limitations. Dealing with several issues that intensify and complicate eachother doesn't make any of them function differently or on another level than it would be otherwise, but it may very well seem that way as my gender incongruent experiences feed my depression which feeds my ptsd which gets in the way of me progressing to a better situation with the incongruence and so on. I spend a lot of mental effort just staying out of intense feedback loops as soon as some event or situation sets off one of them. And if I am already overwhelmed or exhausted, or something in the environment is simultaneously doing something which is like nails on chalkboard only on my brain, then it goes into meltdown territory.

The music is too loud, as always.

Think of AudHD. I don't think that autism and ADHD simply co-occur; I think that, at some level, autism and ADHD are the same thing. In other words, for someone with AudHD, at some level the autism is the ADHD and the ADHD is the autism. I think something similar may occur with profound autism and intellectual disability. Profound autism don't simply co-occur--- at some level, profound autism and intellectual disablilty are the same thing. That is to say, the profound autism is the I.Q. of 40, and the I.Q. of 40 is the profound autism.

I think of autism as tunnel vision. It seems clear to me that ASD - 3 individuals have a more extreme form of tunnel vision than ASD - 1 individuals. Which is to say that ASD-3 individuals are in fact more autistic than ASD-1 individuals.

2:27 I vote that it should be called the Women’s Autism Phenotype instead

I have an IQ of 145, run my own business, and speak seven languages, yet I am autistic and ALL of the things described about higher support needs people does apply to me in various situations and can be extremely debilitating to me. I am never going to be able to live a normal life, in fact the main reason I started my own business is because I am incapable of working a normal job. I am sometimes non verbal for days on end, despite my linguistic abilities. I have no friends or family and am alone most of the day, because of the issues like meltdowns shut downs, extreme overwhelm and unmanageable emotions. I have been in prison and I have a history of addiction, self harm and suicide. I have never finished any education (barely even high school) because I was unable to function in a school environment, despite being perfectly able to learn everything. I could have been in science if it wasn't for my disability. Low support needs doesn't mean NO support needs, and if I had gotten a diagnosis and more support as a child, my life could have been less dysfunctional. The fact we advocate for ourselves and speak of our experiences doesn't erase the other autistics, just like advocating for blind children doesn't erase or prevent the advocacy for the deaf kids. Disability is not a competition for who suffers the most! We all need help, just in various ways and degrees! It is perfectly possible to help multiple people at the same time!

All across the internet peole are claiming that this subset of autistic people are being forgotten and talked over, yet whenever i go out in the real world, they are the yard stick i find myself being compared to. Many professionals continue this attitude of "your existence takes away resources from people who really need it" to the extent that i had two clinical psychologists deny my "label" (they wouldnt even call it a diagnosis). Anyway, thanks for this nuanced discussion.

Thank you! You are spot on!

Hydrated. Thanks Mike for bringing up such an important topic. Autistic support needs should be specified along how the changes in of environment will affect support needs.

RFK does not say that “the government is covering up the cause” and pesticides is most definitely one of the possible causes he’s identified. The real question is why do you and others like you not want to know what’s actually causing this??

Thank you, good explanation!

Excellent, Mike! Time to hydrate!

I hate the terms “mild” and “severe” to describe autism too, especially when people use them to describe others’ autism. “Mild” basically downplays our autistic challenges and “severe” makes it sound like the autism is so tragic. The terms also make the spectrum sound like it’s linear.

It was coined by autism speaks or their comrades. It's defined as autism with IQ less than 50. Kaelyn is one of the rare ND who supports autism speaks. I like her but do not agree with that stance or her acceptance of Netflix not paying the autistic people in the love on the spectrum series.

Thanks, Mike, for addressing this issue. I really appreciate all your hours of thinking, research, planning, spreadsheet construction, filming, and editing to get the message out. By the way, Autism levels are used in Australia, too. They aren't always given in an initial Autism diagnosis, but can be added to a Functional assessment report. It's common knowledge that only levels 2 and 3 are considered for possible disability funding through the NDIS (National Disability Insurance Scheme). ❤

Hydrate! ✋️

Eileen lamb blocked me on her page for commenting “you say you want an open dialogue, but why do you block people who polite disagree with you?” Then she blocked me. Only people who follow her dogma are allowed on her PUBLIC page. The way she talks about Charlie is absolutely atrocious if you look at her post history. So many personal details that are his business, yet she thinks it’s fine to make him look bad in front of the world

Genetic studies will only help non autistic who don't want to bother caring and supporting disabled children.

Until it is no longer an idiopathic diagnosis involving a spectrum of symptoms, you should expect the proposed causes/treatments to be extremely varied. Sometimes it will be right and sometimes it won’t. It just depends on the person… because it’s an idiopathic diagnosis. And as an aside, classified programs have studied/used psychics and esp for nearly 8 decades. We know about their previous redacted projects but we do not have access to their studies. Ofc those facts aren’t proof of anything. But it suggests that the phenomena has been taken very seriously by agencies who may leverage an advantage through it. Have you considered what evidence would convince you that it is real? Would it need to come from a particular source? Or, would that be scientism and/or an appeal to authority? My opinion is that a true skeptic would not be convinced without experiencing it for themselves. Maybe that’s something to explore.

I remember a friend I met a long time ago in the hospital were I was due to severe depression. He was 13, nonverbal, and stuck there because there wasn't proper care units for kids like him. I quickly understood that he spoke in visual metaphors, like bringing his shoes to someone and gesturing towards them to say : "try walking in my shoes" . He made no visual contact and was treated like a burden by the staff (like shit he told me, smearing some on his room wall). I liked him alot, he helped me get better by his sole honest presence. I soon started to be a translator between him and the staff , to which one of them told me " oh, you must be autistic as well, to be able to understand him!" ... Turns out, years later that I am. The boy's name was André, and whenever I hear discussion about "mental disability", "profound autism ", I think about how often is an inability to speak equated to a lack of intelligence? André was as clever as any other teen, he had no problem with understanding what was told to him... He just couldn't respond with words, and made up for that with literal charades and visual metaphors (some were ill received , like the "shit on walls" one😅). How intelligent must one be to invent a unique way to communicate? I'm certain there is alot of folks like him, alistic people just don't have the time or imagination necessary to properly listen and reach out!

Autism and co-occuring conditions are complex. A description like "profound autism" slots neatly into a world of quick soundbites and hyperbolic clickbait. We need videos like this, and we need more people to see them. Also, of course, to remember to Hydrate. (Ooh. I only just figured the Hydrate bit out. It's like the M&Ms thing!) 😄

Brilliant logic here. You explained this very well. I feel like the crux of the problem is that we don’t have a non-stigmatized noun for intellectual disability. In my lifetime we have dumped terms every 10 years…dumb, idiot, moron, etc as they become stigmatized. Strangely, our society seems to need a noun but, when we pick one, it instantly becomes an insult because “being smart” is highly valued. But, as you say, there are many kinds of intelligence. It’s the memorizing and language processing that make a child excel in a traditional school setting. Verbal skills, reading and memorizing are seen as basic necessities to participate in our society and so these are highly valued in Western Culture. Anything that hurts your ability to sit in a chair, listen quietly with focused attention and then regurgitate information is seen as a problem with intelligence…and makes a person “worth less” and “useless” even if there is some task that person would be fantastic at doing! PS I love that you point out that labels for children at 6 are a problem. Being ADHD, dyslexic and autistic, I was the kid who couldn’t read, couldn’t sit still, had no “common sense” and no friends. I was childlike in my wonder and curiosity and joy. My Dad calked me an idiot daily. But I graduated University with an A average, a few friends and a smidge of common sense. My social skills have improved but I still can’t keep friends or jobs long-term even at age 63. I’m a great help to my husband, my kids and often complete strangers because I’m honest , kind, caring, hard working, creative and intuitive.

'Please stim the subscribe button.' So you want me to 1. Put my mouse on the floor. 2. Carefully position the cursor over the subscribe button. 3. Jiggle my right leg up and down (with toes on the floor) and hope I hit left-click with my heel (without pressing any other buttons) once. 4. Repeat Steps 2-3 until I get Step 3 right either by pure chance or with improved heel button-clicking skills. Sounds needlessly complicated if you ask me

It's time to hydrate now

Low support high support works for me

Sounds like a badge for the parents to get recognition for how hard they’re working, instead of validating the actual child or their needs…

So she insists an autistic person needs to smear poop on her wall? I have some followup questions: 1) Does it need to be their own feces or even human fecal matter? 2) Does it have to be her wall personally or should I go to her office instead? 3) Does it need to be certified, notarized, or witnessed officially in some way or is just a note telling her it was done enough.

It just makes no sense to my autistic brain to add an adjective to a noun, when not actually referring in any way to the concept behind that noun. I don't know, it feels to me like saying "blue sun" to mean that the sky is blue and the sun is shining. Why wouldn't you just say the sky is blue AND the sun is shining?! Wouldn't that be more relevant?!

I dont like it because someone whos profoundly deaf has zero hearing. So....what is someone profoundly autistic "lacking" then? And iq is silly considering its a fish climbing a tree contest sometimes

I just dont like it be profound autism implies that they are "more autistic" which is not how it works. Yes the people who fit this term are more disabled then me for example who dose not have an intellectual disability and dose not need 24/7 care but not more autistic because thats just not how it works.

I honestly think that no matter what disability you have, or don't have for that matter, smearing poop on the walls... Is a sign of something entirely else. A need is not being met here.. What ever it might be.. And i think hitting your sibling and screaming all sounds like meltdowns in a person who cant really get their issue or point across. I would maybe argue that this kid, needs another environment to thrive better, this will not make him able to speak true, but i think all destructive behavior comes from something we can or could have helped with.. I might be wrong here, maybe some people just really loves to be destructive and smear poop on the walls, but ill bet it is outbursts due to something in the home or family that just dosent help the kid.. My beat friends brother is an autistic, he doesn't talk unless he really needs to, he only eats 2 things, he learned to cook those two things himself, he was 29 when he finally moved out and into a place with like "24/7" personnel, not that he needs thag much assistance but they are there to help, issuing medicine, helping with laundry, shoping, cooking, financial decitions and so on. Thing is, he needed quite some care but are still somewhat independent.. My best friend and i are both unable to work a job at all, but we both live on our own and function just fine independently. But mental health sucks and needs help as does the energy we dont really have. I have multiple friends who has a job and keeps it just fine, living independently, doing fine, some in relationships others not. My partners cousin works with a lil guy, he has some issues, violent outbursts, anger issues, cant be independent at all. But she found some really great ways to handle all that with him. Sometimes as parents we get burned out because we are alone with it and we constantly have to give our patience away, and then bam, its gone and we treat our child in a way we perhaps shouldnt have.. Its okay. But get that help. We all have different support needs. Some might be physical, others might be independence wise, some needs just the training wheels, others need mental help/support and some dont need any help at all. And as you say these needs might change though life, from day to day, or year to year! I couldn't go groceryshopping alone a few years ago, because i was so mentally exhausted my paranoia and anxiety took over.. I needed help, assistance, i got that, and dropped it as soon as i was able to again. I cannot imagine people who dosent need the help getting it just willy nilly because it says "Autistic" on the paper.. I had to fight to even get help, and i live in a country where healthcare is free and so is social services like this kind of help. I feel like "high support needs" is a fine label. And maybe we should have a different label for those who suffers from these issues that arent really linked to their autism as i understood it? Ofc they should get the help and support they need, but realize that no matter the label, you are getting the same level of support, likely because there isnt really more to give, wich is the conversation we should be having instead! Sorry long phone ramble! I hope it makes sense because i can only see 5 lines at a time 😅

Around17:4... Peanut butter and jelly (as opposed to just peanut and jelly). It's a common sandwich here (USA), especially for children.

❣️💌❣️ Hydration is great.

What's going on in the comment section!? Are these trolls? Bots? Anyway.. I think basic science (not technology) is in its weakest moment in decades. The scientific method and paper publications have been repeatly (mis)used by entities (corporates, institutions, individuals) to "prove" whatever "fact" benefits them using shady practices (cherry picking, fake data). The fact is now a second priority, the first priority is the political policy derived from the research. This has eroded science reputation. Which leads the general public feeling identified with anti-intellectualism ideas. I'm a mathematician, always have been a science advocate. But in the current state is hard to defend it. It makes me feel bad. Scientific investigation policies and incentives need to change. I'm a X-Files fan, so I'm all in for telepathy 😂 thanks for the video

Aside from the label, I have serious issues with people like the mother in question posting videos of their kids online for gain. The mother posted that video and by so doing enshrined that moment...probably for likes and $$$. We don't know if thats a recurring theme from the kid not diagnosed, a moment of frustration, or what. The kid quoted is six, and she's solidified, publicized, and defended the sentiment of him wishing her other kid was a different person. That does both kids a disservice in the long run. Neither of them are old enough to really consent to such content being posted online. I suspect part of the assumption of low intelligence here in the United States is that it was legel to exclude people with disabilities from schooling until the mid-70s, and then for a long time there was the assumption that a disability meant the child was not educable to the same degree as others and so those kids were usually set aside from the rest with less access to education. Because of this, you really didn’t want a child that seemed to be intelligent enough to learn to end up with a label like that even if the child was struggling.

Hydrate! Good reminder to me to go grab a drink. But I do appreciate your coverage on topics like this. Too much “advocacy” is done “for us” not “by us”, and it often gets it wrong as a result. Yes, some will need the assistance of others to successfully advocate - I’m not oblivious - but I would rather it be by people in the community who understand the struggle intrinsically, rather than looking from the outside. I would never lecture an amputee or differently-mobile individual on managing their disability, or on what their needs supposedly are, but this happens to autistics all the time. Thank you for being a voice of reason, even-handed in your approach and delivery, intelligent in your opinion, and clear in intent (as is always expected 😊). You’re doing good work - please continue! Don’t buy into the hate-comments.

Excuse me for being obtuse, but surely if someone's condition is not defined by autistic features it can't be called autism. It would be about as stupid as trying to say people who are deaf-blind are more blind than other blind people because they also have difficulty hearing. It's almost as if people are somehow not allowed to have more than one condition, difference or impairment without having them all over-simplified. Nuanced thinking is becoming increasingly rare, it seems.

Wow something hit home. I am late diagnosed. I studied science at Oxford university and at school was considered crazy successful. When I was 27 I was sectioned for suicidal ideation. In the mental health facility I must have looked like level 3. The noise, the control, the feeling of being trapped, I could barely speak at all, crying all the time. I also had a profound undiagnosed health issue that was causing me so much pain, it was also driving me to look very mentally unwell. Gradually over the next few years I became more well. But it certainly did not start in the few months I spent in a facility. So I sometimes think, the level people present as is more to do with environmental and underlying health issues than autism itself.

I like that Kaelynn is asking these questions, but I'm not sure how we're ever going to land on a consensus (especially with the autism moms and organizations involved in the conversation). I like the idea of levels of support needs. It focuses on the help people need, not what specifically is wrong or different about them. I think the lack of resources for autistic adults is the biggest issue for most people, so that seems like a good starting point.