Also to add to what you said “it’s not that there are more people with Autism” it’s also that our world has increasingly become more unfriendly as a whole for us. Brighter lights, louder noise, more stimulation everywhere, more stuff, more expectations, so it’s just become more apparent the differences between neurotypical and neurodivergent and one way of living is not going to fly anymore
People flat out don't care anymore. My cousin told a random healthcare worker he has ASD, and the exam room lights were too bright. The worker rolled their eyes and snapped ALL the lights of the room off. I'm lucky my cousin didn't full bore melt down that instant.
1. Thank you for not editing, I stumble over words so much and it helps a lot to know it’s not just me. 2. I started seeing my therapist again and she asked what resources I’ve been able to access since my diagnosis. I just laughed. There aren’t even resources for my teenager, there certainly are none for adults. I tried to start a group for autistic teens to socialize at a local library and that went nowhere. It’s like we don’t even exist here (rural areas). So frustrating! I really needed help choosing a career path and never got that help, and I never did end up in a career, just part time jobs I burned out of. 3. I’m so glad society is starting to recognize that not everyone functions in the same way. If we could accommodate that rather than pathologize it, we’d really start getting somewhere.
Thank you for being real.I too have trouble finding words. I'm 62 and just realizing that I and both my children are possibly on the spectrum. Thank you for the information and knowledge you share . lt"'s life changing to have tools to communicate with my children in a way that honors their true self. Keep up the good work. We need more voices like you.
It's no accident, you have so many subscribers. Really great content well-presented. Sixty six and recently aware of autistic aspects of my personality.
I’m 61 years old and I’m just realizing that I am autistic! Your channel was the one that gave me the “A-HA” moment. Thank you so much! I had pretty much decided that I was alone in the world. When I was 5 years old I went to school. In my kindergarten class I was given the workbook “Learn Your Alphabet” on the first day. I was so excited! I knew my alphabet! I filled out the entire book that evening and turned it in the next day, looking forward to what was next. The teacher threw the book in the trash, gave me a new copy, and told me to “stay with the class”. I was bored most of my school years. With pretty much no studying, I graduated with a B+ average. Tried college - 3 times!!! - but I didn’t have the discipline to study. Now I’m 61 and working as a custodian at one of the colleges I tried to attend. I always wondered why my life was a series of “Almost”. I wondered why I am pretty much alone and only feel like I can rely on myself. I worry that I may never be able to retire. I wondered if there was a tribe out there I might belong to (“belong” - such a wonderful word!). I have tried to get a formal diagnosis, but my insurance doesn’t cover testing for adults. I would have to pay $1000 - $3000 out of pocket for the evaluation, so that’s out. It would be great if things improved. I get by, but one day I may need accommodations! It would be great if things improved…
I'm 60, just figuring this out as well. I totally relate to what you said. I feel like my middle name is "almost". I'm hoping both of us get the help we need 🙏
The days you post while having word failure encourage me immensely! I often have the problem, sometimes loosing speech entirely. Adding that to double empathy… It is good to hear community who understand and accept!
Hi Taylor, I want to thank you for your channel and your openess, it's lovely to see and hear someone who is very genuine, empathic and is open about their own struggles. I am 54 man from Manchester in the UK, I was diagnosed with both Autism and ADHD in the summer of 2023. Here in the UK , as in the US, we are seeing increasing numbers of adults being diagnosed. We also find the lack of services & assistance. Many of us have to fight for disability benefits, majority of the community struggle with poverty, with low rates of employment due to discrimination. The positive news is, we are developing our own support networks, educating the public and challenging our elected representatives to involve us in decision-making. Thank you once again .
I wish that there were more resources in the US for autistic adults. After my youngest son was diagnosed AuDHD I went down the rabbit hole and realized that my older son also has ASD, textbook case but the DSM had not changed yet. He was diagnosed with ADHD as a toddler. I have been taking care of my Mother since I was 15 and could never figure out why she was not very functional. She doesn’t take care of herself, has restrictive eating, does not clean the house, doesn’t pay bills, etc. I am certain that she also has ASD. As an AuDHD person myself, taking care of 2 kids with AuDHD and an elderly autistic Mother I could use some help. I have been in burn out for about 25 years now. There are NO supports for adults in the US.
The situation is the same, if not worse in other countries. I have a similar biography, grew up in Canada and now live in Germany. I have spent much time looking at the (scarcely existing) support around the world, in hopes of finding out what actually could help. 😢
Oh wow. I arranged to have my family’s meds delivered to our home for free; a service provided by a local pharmacy. You might look into that. Aging services for your mom? The observation that autistic adults who have adult responsibilities need a TON more help is extremely accurate! 😵💫
To be fair, there is almost no help for the severely mentally ill, either. We fight like hell to keep my friend with schizophrenia in medications and out of homelessness. The only time anyone cares is when the paranoid delusions get bad enough that the police take her to the ER. Then, she gets her medications revamped. If you can't fake normal in the US, you are basically screwed.
Love your off the cuff unedited videos, your pauses and moments to gather your thoughts and words give me time to process what you're saying. Feel like I relate to this unedited version of you a bit better though all your videos are great
I have learned that the more dysregulated I am, the more I struggle with words. I am learning to recognize this as a red flag that I need to take a step back and figure out what is causing the dysregulation. Is it stress, lack of sleep, trying to do too much, etc. Then, I can take the steps I need to take care of myself.
Last week, I was researching for my son and came to the shocking revelation that I have ADHD. (reading about it was like looking in the mirror) I then read that Autism was common in ADHD and upon digging into it....came to the shocking realization that I likely have AuDHD. I've always felt like something was missing and that I was different from everyone. Now I know why! It's an emotional rollercoaster and i'm learning whatever tools that I can to adjust and figure this out. Your videos have been helpful. Thanks!
Thank you for not editing. Ir’s a breath of fresh air to hear someone on YT speak like an actual - autistic - human being 🙏🏻❤️ IMO editing should be considered a kind of masking, only done digitally and afterwards. After all, it conforms to and confirms unrealistic social norms for creators online AND autistic people in daily life. In my case, jump cuts make me feel really uncomfortable because they create such an unnatural speech pattern. It’s like I cannot take time to breathe myself. I often start yelling at the screen, telling the person to take a breath 🙄 Edited to correct punctuation.
In my experience (I'm 66, diagnosed as Asperger at 58/9) the treshold for adults to get a proper diagnosis is so much higher! Partly cause the ppl themselves are grown in their adaptive state, combined with fear of being labeled as autistic or something else. On the other hand, picking up possible signs for autism among health care professionals? Underdeveloped! Very much! This study shows this and the need for improvement. Thank you, mom-on-the-spectrum. Very good job.
The ONLY reason my cousin was able to get diagnosed is we paid $3K cash to the top psychologist in my area who did golden standard ASD testing. My cousin was 50 at the time, and this was 10 years ago. He had a meltdown at work, and the diagnosis saved him from being outright fired. Fast forward over 10 years, it is impossible here to find anyone doing adult diagnosis that holds any weight for a disability claim. It is so gross you have to travel and go broke to get diagnosed.
I would like to share this information with a Professor associated with The University of Georgia who operates as a faculty advisor for a group providing resources and support on a weekly basis for not only the autistic students of UGA, but the surrounding community at-large. I also was diagnosed in my early 30's and was very kindly welcomed to participate in this group despite not yet being an official student (I plan to finish my undergrad degree here). This professor is not only doing monumental work herself, but is allowing young autistic adults to actually *do something about it* by genuinely incorporating our input into creating a local network of resources that will (hopefully) allow more self-diagnosed to overcome the myriad barriers blocking them from access to assessments. This group also represents a genuine source of aftercare where people with a fresh diagnosis can engage in real life resources catering to the fact that they are *adults*.
P.S. I'd rather hear the truth spoken to me in stumbled words than lies that have been edited dozens of times to give off the illusion of reality. What you do is genuinely inspiring and positively impacts literally hundreds of thousands. That's pretty impressive for a mom who just sat in front of her webcam and spoke her mind.
Thank you for sharing this story and research. An additional point that affects the results of this study, especially for adults. Prior to 2013 when the DSM-V was released. One could not be diagnosed with ADHD (which I have been diagnosed with for at least 4 decades) and ASD. Which is why I was just diagnosed on the spectrum in August of this year at 57 years old.
Yep. I was diagnosed “ADD” (should have been ADHD-PI) at 22 in 2004. Given there is medication for ADHD, that diagnosis, much sooner, would have been better for me than the “Aspie” diagnosis I also would have qualified for; silly there had to be an either/or choice, though! 😑
Knowing is everything, I'm 46 and now that i know after so much suffering alone and wandering through bad mental health care. I can finally address what's wrong and make the accommodation that are almost vital to me.
I was homeschooled and thought the reason I processed things differently was just because of that. Then in my late 30’s, my husband and I began to suspect maybe I had ADHD, so we found a specialist and I went in for testing. At the age of 40, I finally found out that my sensory processing differences are due to both ADHD and Autism. It’s only been a few months since learning this, still trying to wrap my brain around this news. But wanted to say I have found your content quite helpful and enlightening. Thank you for sharing your journey with us.
Thank you for unedited it does help with realising my word difficulties. It's great that that us adults are starting to get recognition. It's people like you who is helping make that happen so thank you. Xx
Preach…not that there’s more autistic people it’s that there are more people who know and can access resources!!!! Yes to this! Thank you for this and thank you for going unedited!
you're welcome! and thanks for the support for the unedited format... hard for me to commit after I keep stumbling over my words but sometimes I just want to be honest about how I really process information and string my words together. 😅
There are other studies that say every 9 out of 10 Autistic adults over the age of 50 do not have an Autism diagnosis. The U.S. government and States do not want to get that age group diagnosed with ASD because they would then have to admit their policies of not providing supports vastly harmed generations as the majority of that age group of Autistics would have to be found, and they would no doubt be found homeless and incarcerated precisely due to the lack of Autism support services.
My cousin is in this group. Was diagnosed at age 50. He can receive zero supports even though he borders on level I/level II. I am told if he has "issues" acting out/melt downs, the only place for him at 62 is a geri-psych ward or a memory care unit. Unbelievable.
Somehow your unedited state of mind while recording really resonanted with my experience of revising (when I'm not hyperfocusing). It kinda feels like a barrier between me and reality, like not knowing the words to communicate your thoughts.
I love you showing how hard it can be to talk.❤ Sometimes I really think I'm losing the ability to speak because of how difficult it can be to form a sentence out loud. Writing has always been much easier for me. Even though most people would consider me well spoken, it feels like I am having to do mental translation every time I speak and listen in my native language.
YES! Sometimes I feel like I'm losing the ability to talk as well. Lately I've been forgetting basic words and just stopping mid-sentence with no idea how to carry on.
@@MomontheSpectrum Dude, I believe I'm exactly your age (34) and on a regular basis I ask myself (usually out loud) if the *developmental* aspect of autism is frying my linguistic capabilities. Taking a step back from the internet and disengaging from the copious amounts of brainrot content that plagues pretty much every corner of 2024's online spaces usually helps me reassess and recuperate. Still, it's absolutely scary to be in my mid-30's and run into scenarios where I start to wonder if dementia/Alzheimer's is starting to manifest.
The dementia scare is so real, I really have days where I feel like every second word is hiding behind a door in my brain that is currently locked, and may or may not open at a later time q__q
The same thing happned when information of being trans being became more available, more people knew that they are trans, come out as trans and getting the health care we trans need to treat dysphoria and be ourselves Also this what happened with autism, the more information the more people knew that they are autistic and getting help and accommodations with their autism.
I just want to say that I appreciate the unedited format on this one despite suspecting how uncomfortable it must be to do it that way when I think about how uncomfortable I would be doing it that way. It is nice to get a glimpse of your humanity, and I suspect it makes it a lot more obvious that you’re not “fine” and just “faking autism” for clicks or whatever it is that people these days love to claim autistic people are faking their autism for. I hope you found all your fidgets, too! I know at least one of them went on quite an adventure to the back of the room there! I hope it had a good time. 😂❤ I just wanted to say how much I appreciated your honesty and vulnerability in this one because I know how important it is to feel safe and accepted in the spaces you occupy. Also, great content!
You're doing great! Remember that double-empathy problem experiment where all the communication problems go away when the ND people are with other ND people? We're the other ND people in that experiment and we're right there with you.
I really appreciated this video, definitely needs to be more support for late diagnosed adults. Even the diagnosis process is so much harder once you’re over 18. I also appreciated your no edit style. When I’m stressed my words are often the first thing to go for me. I find myself relying on Eleven Labs voice overs in my videos sometimes when it’s really bad.
I advocate for people with high support needs autism. Autism needs to stay considerd a disability. I think people only see one side of the spectrum. The same people living similar lives because of where they are on the spectrum. There are people out there on the spectrum that have high support needs. If you dont great. But if wasnt a disibility peopele wouldnt get what they need. And there would litterly be autistic people out there starving, dying on the streets. People severly impacted have high support needs. If you advocate for this remember you’re wanting people who are autistic as well to suffer as were already not heard. To be thrown out of group homes and homless taken advantage of and possibly even kidnpaed and told we dont need support cause only autistic people fly to the moon. We will not get what we need or taken care of if this is not considered a disibility. We matter too!
I love Ono fidgets as much as you do. You were the first person (other than me) that I heard talking about the Ono roller back when that was the only fidget they made. I got the scroller and the slider thanks to you. Now I gave the fidget signets on my wishlist.
Thanks for letting us know about this! I will definitely read through the study & article more thoroughly (when I can "brain" better). How fantastic is this, though?! But also, how infuriatingly obvious. I lose my words &/or trip over them too, especially if I'm in a room full of people. Too much auditory distraction.
love the unedited you. you're wonderful as you are. thank you for having the courage to share your true self with us, offering us permission to do the same.
I keep hearing everybody talk about “resources “. What are the supposed resources that I keep hearing about? I am just curious. I don’t think there is anything I really need as far as resources. But then again you never know. I am 60 years old and I realized I am autistic this past year. I will not be seeking an official diagnosis because I don’t feel like I need to give a stranger thousands of dollars to tell me something I already know.
Btw, there was a time when homosexuality was a “diagnosis “ as a mental illness. Thankfully , we are not there anymore. I’m hoping there will be a time when autism is just seen as another way of a brain processing the world we live in, and not something we have to be “diagnosed” with.
The diagnosis saved my cousin from being outright fired and homeless. The company did a disability LOA and that will turn to full retirement at age 65. My cousin has 3 more years for that. The company wanted him gone. With the ASD diagnosis, they couldn't really do this. To cut their losses, the company threw money at him to go the hell away. Had they done two accommodations, my cousin could have went back to work. His coworkers raised hell not wanting him back, and the company did the above to shut everyone up.
Yay for unedited!🎉 Edited videos are harder to watch. The cuts break my brain 😅 Honestly easier to watch people speaking unedited even if the “words are not wording”. More relatable and real too. Taylor you are the best! ❤
7:42 I believe cameras these days prefer to focus on faces. But some have a “product” focus mode that prioritizes something that a person presents in their hands.
Thank you for confirming your natural speech/thought pattern! Until recently I never understood why there were/are many pauses in thought until the AuDHD light went on. Systems thinking helps organize, but mostly preferred way is to be off the cuff, (suppose that is the ADHD side). Creative institutions must be filled with neurodivergent people, although seldom discussed as to why we are how we are...
Hello everyone! I just recently was unofficially diagnosed with autism. Since going to my therapist and discovering my autism, it’s been enlightening in some ways to put all the pieces together over my life that now makes sense. It also though feels very isolating because I don’t feel like I need to tell other people about me especially at work however I do feel very isolated and judged by how I react to events. Perhaps telling others would help. Does anyone know a resource group that I could connect with? I’d love to hear and see if anyone else feels the same on this journey. Thank you for the videos and wonderful content!
Great video about great news! Like a lot of other commenters, I appreciate your vulnerability and honesty in posting unedited videos. It’s a nice change of pace from so many other TH-camrs who don’t even show themselves taking a breath! You mentioned at the beginning that, being a single mom, sometimes you don’t have time for editing. As mentioned above I love your style, but if you ever need a volunteer editor for very chill, light editing, I would be glad to help for free! No pressure of course!
I haven't even watched the video yet, but I was born in 1972 which means at this moment I am 52 years old. And while I lucked into a very cool creative job in my mid-twenties to mid-thirties, everything since then has been really tough.
I wish there were some, any, support for autistic adults in the UK. Everything is for children. I was diagnosed at age 59. I had to wait on a waiting list for five years to get an assessment. I have spent six decades feeling that everything that was wrong with me was my fault; everything I found difficult was because I was stupid/weak/defective, etc. etc. I was bounced around all sorts of mental health departments, given the wrong diagnoses, and then blamed when the treatments didn't work. There's no actual support available for autistic adults, especially anyone as old as me.
What I found with my cousin with ASD level I, providers loathe working with adults. My cousin has serious issues with body awareness and social skills. He was diagnosed at 50, which is rare where I live. He could really use PT, OT as speech pathology, and would receive it IF he was a child. There are pediatric providers, but they stop working with clients once the client is 18 or 21 if they have a level III diagnosis. So my cousin moves "funny", people think he's high, has poor small motor skills and issues with pragmatic speech. He's 63 now, and it's all getting worse because he can't mask as well anymore. One doctor thought my cousin had Lewy Body Dementia due to the cluster of odd symptoms. He does not. Insurance pays for you to survive, not thrive as an adult. ASD is considered a money pit diagnosis, and insurance will fight you tooth and nail for treatment. The only way you thrive with ASD in the US, is if your family has connections and really deep pockets.
55 year old man here diagnosed 3 years ago. I always see my thoughts as an information highway. The words coming out seem to be hampered in speed quite a bit. Struggling with speech an words is recognizable a lot
actually im not sure 😬totally would've been helpful for me to research that before posting the video. ha. but yes looks like just the pre-order right now www.kickstarter.com/projects/sleeklifedesign/ono-signets-a-force-to-fidget-with
FYI, they had to redesign them due to regulations on the size of magnetic items due to child safety. So the ones you can preorder are significantly larger than the demo ones in this video. I had to cancel my pledge cause I have tiny hands and the larger ones would not work well for me. So I’m super jealous of anyone who has the small prototype version!
Something I found interesting about this study is that it's only including people who have a diagnosis in their insurance records. Many people pay out of pocket in the US for their evaluation either because insurance won't pay or because they don't want the diagnosis in their electronic chart. I haven't finished this thought yet but maybe someone else wants to take it and run with it?
I turn 45 in a few days and I need a official diagnosis but kind of have an unofficial one by my therapist and it's very obvious once you notice it and it's kind of weird realizing that was me my whole life and why it went away it did a lot of times. And now that I'm finally up from beneath the weighted blanket of depression I am back to being ridiculously ADHD as I would also been diagnosed with in addition to autism as a child if they did that testing at the time
I don't know if you know this, but as far as more resources for older Autistic adults, and Social security disability oftentimes being one of them, the U.S. Supreme Court just decided a case defining "severity" of disability but then devastated older Autistic adults by saying the claimant has the burden of proof and has to prove their disability is severe when most Autistic people due to being Autistic can't prove anything much less that. So, by saying that Neurotypical design in their recent opinion, just basically took away supports from vast numbers of older Autistic adults.
My cousin lost two SSDI appeals using autism as his main diagnosis. The judge threw them out in record time. He won on the last appeal using a medical diagnosis and not mentioning autism. The new lawyer said that unless you are level III, the local judges throw the adult autism and ADHD cases out.
@@lilbatzThey are way off base and I'm willing to take them on a Federal Court ride over Autism. You can't have an 86 % National Autism unemployment rate, the levels of social exclusion, ostracization, and bullying, and almost 100 % Neurotypical refusal to interact with Autistic people, and the 40 + language differences that exist and sustain these arbitrary and capricious SSA decisions coming out. The ALJs don't have any Autism educational training and I have yet to see one single doctor SSA uses that has any Autism training. The U.S. is denying Autism claims to keep the Social Security budget to pay Neurotypical people's retirement benefits going as long as possible. It's an intentional system of oppression, Autism Apartheid, and human rights violation, and that's what it's all about. I will take the SSA claims on Autism ONLY, and not my other 30-40 diagnoses. I'll leave a legacy so this doesn't ever happen to anyone else who is Autistic. That's what I'll fight them for. So, TY for your comment, but it's really cowardly and doesn't help Autistic people at all.
@@lilbatz Also, if that was my lawyer, that Neurotypical lawyer should be reported for unethical Autism discrimination and and a lawyer malpractice claim filed on his E&O insurance, and that's what I would do if I had any lawyer like that who could not give effective assistance of counsel like that guy. It's pretty clear that lawyer doesn't really understand a thing about Autism. Autistic people want to hire Autistic lawyers, but there aren't any basically, so we can't ever get effective assistance of counsel, just Neurotypical dummies who give bad legal advice and don't really care are the fate of Autistic people. Autistic people don't want to hire Neurotypical lawyers. They're stupid.
I wonder what kinds of insurance the article is referencing. I’m guessing private because I have state insurance where I live and you can’t get treatment for AFRID or even diagnosed with autism at my age unless you get lucky to find someone to help you and you’ll have to pay for it🤷♀️🤯
I’ve found an autism organization jn AZ that will take state insurance in regard to seeking a diagnosis, but I’m still on a waiting list and the assessment can take a few hours. I’m not sure I’ll ever get diagnosed, lol so I’m just waiting. Also, I wanted to say before finding this organization other places would only take cash not any kind of insurance. It’s crazy trying to get diagnosed as an adult.
That is so super cool! So glad to hear - I hope this kind of attention comes to my neck of the woods at some point. I was looking at the Maine Society for Autism site today and they have one token autistic person on their board. Yikes.
unedited is so much better. autists love authenticity. let's hope all that tracking and harvesting doesn't get us on registries with the new administration. there are a handful of states with registries already. registries havent gone well for marginalized people in the past. be careful if you are formally diagnosed.
I was surprised to read in the study that in 2011 only 0.23% of the 12 million people had ASD (in 2022: 0.63%). That is way lower than the estimated 1% worldwide, which I have read online quite often in the last years. But 12 million out of the 335 million Americans is just 3,6%. And all Americans together are just 4,2% of the 8 billion humans on earth...
I really think the lack of diagnosis for adult autistics is that their GP or other "regular" doctor simply does not have the knowledge to pick up on those cues in someone that has learned to mask or "fit in". Most of them really don't even understand it in children. This is why I am hesitant to ask my nurse practitioner to look into this (the only way I could get diagnosed with provincial health coverage). I feel she didn't take me all that seriously about my physical and neurological/mental health issues when we finally decided to find ourselves a doctor. We have little choice in who our practitioner is either, as Saskatchewan is horrendously short on any kind of front-line doctors in the general practice field, and some just pump people through like cookies because that is how the government pays them.
I'm 23 years old and I'm an Autistic EPIC PLAYER Actor. EPIC PLAYERS is a neuro-inclusive theatre company in NYC that was founded in 2016 by a woman that is all about Inclusion. Empower Perform Include Create
I just want to point out that long long ago... being left handed was seen as "somethings wrong with your child". Now after they did a study and showed that it was completely normal for people to have either a left or right hand as their main hand and nobody should be ashamed... the amount of left handed people (percentage wise) shot up by a HUGE percentage. Which everyone said the same thing about that as they are with autism. "Everyone's left handed nowadays, everyone just wants to be left handed to stand out." ... People tend to forget that those people just existed in the first place. They weren't trying to be anything different or new, they were just accepting who they are and trusting that those around them (whom they love and trust) accept them as they are. Too bad common decency and respect isn't a thing anymore.
While our culture/society likes to think we care for the disadvantaged, the fact is that the "care" for the disadvantaged is centered on what government provides. This is a critical mistake we have made in how we interact with each other. This change goes back to the end of WW2 when government programs were ushered in. How did American's fly through the great depression? Have you ever heard someone tell their story of what happened? We have lost the value system that existed back then. When a person hits 60 they become "unimportant" to society. The issues they face are ever increasing but the ability for society to see them is ever decreasing. We can force people to "care" by passing laws or trying to site science. But the bottom line, caring for another must come from the heart, and this cannot be forced. Government "caring" is a facade. There is no true heart-felt care the comes from the government. The Canadian government is a case-in-point. There are documented cases where military veterans, who very much want to live but need assistance, were advised to partake of the government service of "assisted $ui$ide". One case all the veteran needed was a wheel chair lift. I'm facing similar issues. I have neuro-divergent stuff going on. ADHD, dyslexia, maybe autism. In the last three years I went through bladder cancer, bladder removal with a neobladder urinary diversion, septic shock, and divorce. All of these were going on at the same time during part of those three years. I have several chronic medical conditions now. But I have reached the end of the "medical communities compassion", ie - end of what insurance will pay for. I am not OK. I'm not sure I can continue to sustain my career. Government "compassion" will kick in (maybe) if I fail financially. Whats the point? The point I'm trying to make is that, this side of heaven, human compassion is limited. Don't put your hope it. www.foxnews.com/politics/canada-offered-assisted-suicide-paralympian-veteran-wanted-wheelchair-lift-installed-report
Exactly tell that to the NDIS in Australia they discriminate against neurodivergent adults and block the essential supports we need for everyday physical and mental health and wellbeing
It still upsets me that they think the only Autistic adults that exist and that need support are those who are aging out of the child supports now. Those of us who are in our fifties and over still are not even really recognized as actually existing and in need of help. We had to grow up and navigate a vicious nt society with no help or resources or services at all as children and young adults and now that we are so exhausted and worn out from that effort, our needs are still being completely neglected by society.
I think the very useful info and the research you do far outweigh the slight (but annoying to you) pauses you make. Surely you consider your voice a talent, along with all others. It has a quality that is suitable for professional podcasting, as well as having a friendly, conversational lilt. It's good to hear that there seems to be some foundational research getting done for all the autistic. Do you think it is coming out too slow? i think science is slow, but I guess that is necessary for the most complete and reliable information. Maybe the research being done back around 2011 will come in like a tide now, in these days. Like the amount of diagnoses going up 450% for the young adult demographic. Since autism is genetic, that discovery of young adults should translate to all ages, if only older adults were as strong with using the information superhighway. Would 'data mining' be better than 'harvesting?' I wonder if anyone would be interested in studying me so that I can get a free diagnosis. They probably want people that already have a diagnosis. They don't need more work along with the research. Thanks for the work you do! Your channel is a hub.
Thank you for your very kind and supportive words. As far as the research coming out too slow... at the moment I'm just grateful the research is happening. But there is a lot of work to do!
@@MomontheSpectrum I agree! From your poring over research (is that the correct, or is it 'pouring?') how robust or enthusiastic do you feel research is being done out there?
I'm new to your channel and I suspected myself for a very long time. And last night I had a meltdown because I really want the answers and I feel like a diagnosis and then follow up so it would be helpful but then I'm like would it really? I can spend the money but I feel like I won't because there's other things I want more I guess. I have great insurance I wish there were more resources.
The other really important factors explaining the rise in the diagnosis rate of autism (and other neurodevelopmental conditions): - Poor understanding in the past meant fewer professionals were able to recognize the condition. It takes a while for health-related research to translate into diagnostic standards and then into widespread clinical practice. - Greater stigma meant more adult caretakers (parents, teachers, etc.) would dismiss signs of the condition as misbehavior, or as the child acting 'normal' (normal to them because the parents likely are autistic, or have lots of autistic family members). - Earlier definitions of the diagnostic criteria were rather restrictive in terms of who could get diagnosed, and were also very biased, such that a lot of people who didn't fit the bill of white males from affluent families wouldn't be identified correctly, plus the restricted criteria that only spotted high support need individuals. - Our digital era rat race makes life harder for neurodivergent individuals in general, but especially for autistic people. This means more people cross the threshold into impairment / distress when in the past they might have been able to find some niche role that accommodated their way of perceiving, thinking, behaving and communicating. - Earlier diagnostic criteria was exclusionary with respect to ADHD, which meant incomplete or incorrect diagnoses for people who experience both (large overlap)
Hello I'm also a content creator I do not edit my stuff 😅 . I just been recently sent in a loop. They're like you need this and this and this to get diagnosed. Entire loop around. I just transferred to a different town. I feel wiped out an exhausted for being on the phone for so long . I do not like the phone. The only diagnosis that was ever right was ADHD but then there was other components completely not there and I've been misdiagnosed with intellectual disorder which is crazy. I used to put me on antipsychotics which is also crazy. Made me really sick and gave me a lot of health issues. I am personally not happy with the mental health care system they need to take care of all kinds of different people correctly. They need to stop pretending they think they know people . And let people speak for themselves 🤬. Maybe someone can relate on here. I know in my heart that I have undiagnosed autism and it's really sad cuz I went through life struggling with everything . And people having a hard time understanding where I'm coming from 😭. The universe has been trying to tell me on a personal level what's up but it makes me incredibly sad that it's so late in life now 36. I can only do content creation jobs are a no go for me. Scheduling meetups with time is it credibly stressful. I literally have to go at my own pace and my own flow I cannot flow with this world and it's so challenging. And I'm sure so many people can relate to this. I'm not looking to be fixed I'm just going through my own thing right now. Expressing myself in hopes someone else will understand and not feel alone as well. Cuz I understand how it can feel isolating and lonely and so much more.
its well possible that through pollution there are more autistic people now. Nobody knows. There is scientific research pointing to pollution leading to more autism among those that can develop autistic brains from genetic roots.
Thanks for always being as authentic as possible, isn’t that one of the key aspirations for many of us, to be able to be the way we are? And it’s so hard! 🫶
Please don’t take the scientific term “data harvesting” personal, especially when reading research that’s supports your cause. If the word “harvest” somehow triggers you, perhaps you explore that within yourself, versus suggesting the scientific field change their terminology. 🤓 I think recognition of how certain words affect us is great, but it’s internal personal work if a research report uses a term that’s bothersome. In psychology, when they refer to positive and negative, it’s not meaning good and bad, happy and sad. It means adding or removing. Negative symptoms means something is removed. Positive symptoms means something is added. Let’s not be offended by semantics when’s they hold the facts and have most power. Thanks for considering it!
Also to add to what you said “it’s not that there are more people with Autism” it’s also that our world has increasingly become more unfriendly as a whole for us. Brighter lights, louder noise, more stimulation everywhere, more stuff, more expectations, so it’s just become more apparent the differences between neurotypical and neurodivergent and one way of living is not going to fly anymore
People flat out don't care anymore.
My cousin told a random healthcare worker he has ASD, and the exam room lights were too bright. The worker rolled their eyes and snapped ALL the lights of the room off. I'm lucky my cousin didn't full bore melt down that instant.
Thank you so much for not editing. It's literally the reason I don't like to talk on the phone. Because my brain goes blank.
Glad to hear this format is helpful for you!
I agree completely with the previous comments. This seems so real and hits home and makes me feel not so alone, thanks for being brave
I would rather watch the unedited videos for some reason 🙃🙋
1. Thank you for not editing, I stumble over words so much and it helps a lot to know it’s not just me.
2. I started seeing my therapist again and she asked what resources I’ve been able to access since my diagnosis. I just laughed. There aren’t even resources for my teenager, there certainly are none for adults. I tried to start a group for autistic teens to socialize at a local library and that went nowhere. It’s like we don’t even exist here (rural areas). So frustrating! I really needed help choosing a career path and never got that help, and I never did end up in a career, just part time jobs I burned out of.
3. I’m so glad society is starting to recognize that not everyone functions in the same way. If we could accommodate that rather than pathologize it, we’d really start getting somewhere.
Thank you for being real.I too have trouble finding words. I'm 62 and just realizing that I and both my children are possibly on the spectrum. Thank you for the information and knowledge you share . lt"'s life changing to have tools to communicate with my children in a way that honors their true self. Keep up the good work. We need more voices like you.
It's no accident, you have so many subscribers. Really great content well-presented. Sixty six and recently aware of autistic aspects of my personality.
I’m 61 years old and I’m just realizing that I am autistic! Your channel was the one that gave me the “A-HA” moment. Thank you so much! I had pretty much decided that I was alone in the world.
When I was 5 years old I went to school. In my kindergarten class I was given the workbook “Learn Your Alphabet” on the first day. I was so excited! I knew my alphabet! I filled out the entire book that evening and turned it in the next day, looking forward to what was next. The teacher threw the book in the trash, gave me a new copy, and told me to “stay with the class”.
I was bored most of my school years. With pretty much no studying, I graduated with a B+ average. Tried college - 3 times!!! - but I didn’t have the discipline to study.
Now I’m 61 and working as a custodian at one of the colleges I tried to attend. I always wondered why my life was a series of “Almost”. I wondered why I am pretty much alone and only feel like I can rely on myself. I worry that I may never be able to retire. I wondered if there was a tribe out there I might belong to (“belong” - such a wonderful word!).
I have tried to get a formal diagnosis, but my insurance doesn’t cover testing for adults. I would have to pay $1000 - $3000 out of pocket for the evaluation, so that’s out. It would be great if things improved. I get by, but one day I may need accommodations! It would be great if things improved…
I'm 52, and relate strongly .
I hope your glorious self gets to shine out one day
Im 67 and just figured it out too.
@@pepperings Sorry! The reason the book was thrown away - it was the book for the whole school year, and I had answered it all overnight.
I'm 60, just figuring this out as well. I totally relate to what you said. I feel like my middle name is "almost". I'm hoping both of us get the help we need 🙏
I’m 64 and it’s just been in the last couple of years I’ve found that this is why I am like I am.
Same! 60 years old and.... light bulbs.
Me too at 53
I'm 64 too !
The days you post while having word failure encourage me immensely! I often have the problem, sometimes loosing speech entirely. Adding that to double empathy… It is good to hear community who understand and accept!
Hi Taylor, I want to thank you for your channel and your openess, it's lovely to see and hear someone who is very genuine, empathic and is open about their own struggles.
I am 54 man from Manchester in the UK, I was diagnosed with both Autism and ADHD in the summer of 2023.
Here in the UK , as in the US, we are seeing increasing numbers of adults being diagnosed. We also find the lack of services & assistance. Many of us have to fight for disability benefits, majority of the community struggle with poverty, with low rates of employment due to discrimination.
The positive news is, we are developing our own support networks, educating the public and challenging our elected representatives to involve us in decision-making.
Thank you once again .
I wish that there were more resources in the US for autistic adults. After my youngest son was diagnosed AuDHD I went down the rabbit hole and realized that my older son also has ASD, textbook case but the DSM had not changed yet. He was diagnosed with ADHD as a toddler. I have been taking care of my Mother since I was 15 and could never figure out why she was not very functional. She doesn’t take care of herself, has restrictive eating, does not clean the house, doesn’t pay bills, etc. I am certain that she also has ASD. As an AuDHD person myself, taking care of 2 kids with AuDHD and an elderly autistic Mother I could use some help. I have been in burn out for about 25 years now. There are NO supports for adults in the US.
The situation is the same, if not worse in other countries. I have a similar biography, grew up in Canada and now live in Germany. I have spent much time looking at the (scarcely existing) support around the world, in hopes of finding out what actually could help. 😢
Oh wow. I arranged to have my family’s meds delivered to our home for free; a service provided by a local pharmacy. You might look into that. Aging services for your mom? The observation that autistic adults who have adult responsibilities need a TON more help is extremely accurate! 😵💫
To be fair, there is almost no help for the severely mentally ill, either. We fight like hell to keep my friend with schizophrenia in medications and out of homelessness.
The only time anyone cares is when the paranoid delusions get bad enough that the police take her to the ER. Then, she gets her medications revamped.
If you can't fake normal in the US, you are basically screwed.
Love your off the cuff unedited videos, your pauses and moments to gather your thoughts and words give me time to process what you're saying. Feel like I relate to this unedited version of you a bit better though all your videos are great
You should have the same support throughout your life as an adult as children do . Everyone is equal and that support is forever. for life.
Yes!
Love the "words are hard today". I'm going to use this more. ❤
I have learned that the more dysregulated I am, the more I struggle with words. I am learning to recognize this as a red flag that I need to take a step back and figure out what is causing the dysregulation. Is it stress, lack of sleep, trying to do too much, etc. Then, I can take the steps I need to take care of myself.
From my son's diagnosis alone came mine 3 years later and about 4 self identifying adults in my family. Thanks for sharing this and the explanation! 💞
You're welcome! Thanks for your comment, Whitney!
Last week, I was researching for my son and came to the shocking revelation that I have ADHD. (reading about it was like looking in the mirror) I then read that Autism was common in ADHD and upon digging into it....came to the shocking realization that I likely have AuDHD. I've always felt like something was missing and that I was different from everyone. Now I know why! It's an emotional rollercoaster and i'm learning whatever tools that I can to adjust and figure this out. Your videos have been helpful. Thanks!
Wow! All at once like that! Yes, that really must be quite the shock. Best wishes in your pursuit of supports that help you live a better life! ❤
Thank you for not editing. Ir’s a breath of fresh air to hear someone on YT speak like an actual - autistic - human being 🙏🏻❤️
IMO editing should be considered a kind of masking, only done digitally and afterwards. After all, it conforms to and confirms unrealistic social norms for creators online AND autistic people in daily life.
In my case, jump cuts make me feel really uncomfortable because they create such an unnatural speech pattern. It’s like I cannot take time to breathe myself. I often start yelling at the screen, telling the person to take a breath 🙄
Edited to correct punctuation.
yes! Jump cuts break my brain 😅 Unedited is so much better ❤
In my experience (I'm 66, diagnosed as Asperger at 58/9) the treshold for adults to get a proper diagnosis is so much higher! Partly cause the ppl themselves are grown in their adaptive state, combined with fear of being labeled as autistic or something else. On the other hand, picking up possible signs for autism among health care professionals? Underdeveloped! Very much! This study shows this and the need for improvement. Thank you, mom-on-the-spectrum. Very good job.
The ONLY reason my cousin was able to get diagnosed is we paid $3K cash to the top psychologist in my area who did golden standard ASD testing.
My cousin was 50 at the time, and this was 10 years ago. He had a meltdown at work, and the diagnosis saved him from being outright fired. Fast forward over 10 years, it is impossible here to find anyone doing adult diagnosis that holds any weight for a disability claim.
It is so gross you have to travel and go broke to get diagnosed.
Beautiful fidget toy.
After a lot of time some scientists said what is obvious for autistic adults: we exist and we deserve the support we need.
I would like to share this information with a Professor associated with The University of Georgia who operates as a faculty advisor for a group providing resources and support on a weekly basis for not only the autistic students of UGA, but the surrounding community at-large. I also was diagnosed in my early 30's and was very kindly welcomed to participate in this group despite not yet being an official student (I plan to finish my undergrad degree here).
This professor is not only doing monumental work herself, but is allowing young autistic adults to actually *do something about it* by genuinely incorporating our input into creating a local network of resources that will (hopefully) allow more self-diagnosed to overcome the myriad barriers blocking them from access to assessments. This group also represents a genuine source of aftercare where people with a fresh diagnosis can engage in real life resources catering to the fact that they are *adults*.
P.S. I'd rather hear the truth spoken to me in stumbled words than lies that have been edited dozens of times to give off the illusion of reality. What you do is genuinely inspiring and positively impacts literally hundreds of thousands.
That's pretty impressive for a mom who just sat in front of her webcam and spoke her mind.
I have an aunt in Decatur and a a few cousins pretty close to there as well. That’s good that GA is getting better at helping undiagnosed adults.
Thank you for sharing this story and research. An additional point that affects the results of this study, especially for adults. Prior to 2013 when the DSM-V was released. One could not be diagnosed with ADHD (which I have been diagnosed with for at least 4 decades) and ASD.
Which is why I was just diagnosed on the spectrum in August of this year at 57 years old.
Yep. I was diagnosed “ADD” (should have been ADHD-PI) at 22 in 2004. Given there is medication for ADHD, that diagnosis, much sooner, would have been better for me than the “Aspie” diagnosis I also would have qualified for; silly there had to be an either/or choice, though! 😑
Knowing is everything, I'm 46 and now that i know after so much suffering alone and wandering through bad mental health care. I can finally address what's wrong and make the accommodation that are almost vital to me.
I was homeschooled and thought the reason I processed things differently was just because of that. Then in my late 30’s, my husband and I began to suspect maybe I had ADHD, so we found a specialist and I went in for testing. At the age of 40, I finally found out that my sensory processing differences are due to both ADHD and Autism. It’s only been a few months since learning this, still trying to wrap my brain around this news. But wanted to say I have found your content quite helpful and enlightening. Thank you for sharing your journey with us.
Same! Also homeschooled(likely in part because of my autism) and diagnosed last September. I'm 37.
Thank you for unedited it does help with realising my word difficulties.
It's great that that us adults are starting to get recognition. It's people like you who is helping make that happen so thank you. Xx
You're welcome! And thanks for your comment. It takes all of us to spread this message. :)
Preach…not that there’s more autistic people it’s that there are more people who know and can access resources!!!! Yes to this! Thank you for this and thank you for going unedited!
you're welcome! and thanks for the support for the unedited format... hard for me to commit after I keep stumbling over my words but sometimes I just want to be honest about how I really process information and string my words together. 😅
@@MomontheSpectrum @lisabmpls
i agree; thank you! from my perspective- unedited helps us all be even more accepting of ourselves :) i stumble, too.
There are other studies that say every 9 out of 10 Autistic adults over the age of 50 do not have an Autism diagnosis. The U.S. government and States do not want to get that age group diagnosed with ASD because they would then have to admit their policies of not providing supports vastly harmed generations as the majority of that age group of Autistics would have to be found, and they would no doubt be found homeless and incarcerated precisely due to the lack of Autism support services.
My cousin is in this group. Was diagnosed at age 50. He can receive zero supports even though he borders on level I/level II.
I am told if he has "issues" acting out/melt downs, the only place for him at 62 is a geri-psych ward or a memory care unit. Unbelievable.
I love that you don't edit this. If you never edit again, I still support you. ❤ I signed up for the 4.99 yesterday. Your channel is a lifeline.
Somehow your unedited state of mind while recording really resonanted with my experience of revising (when I'm not hyperfocusing). It kinda feels like a barrier between me and reality, like not knowing the words to communicate your thoughts.
I love you showing how hard it can be to talk.❤ Sometimes I really think I'm losing the ability to speak because of how difficult it can be to form a sentence out loud. Writing has always been much easier for me.
Even though most people would consider me well spoken, it feels like I am having to do mental translation every time I speak and listen in my native language.
YES! Sometimes I feel like I'm losing the ability to talk as well. Lately I've been forgetting basic words and just stopping mid-sentence with no idea how to carry on.
@@MomontheSpectrum Dude, I believe I'm exactly your age (34) and on a regular basis I ask myself (usually out loud) if the *developmental* aspect of autism is frying my linguistic capabilities. Taking a step back from the internet and disengaging from the copious amounts of brainrot content that plagues pretty much every corner of 2024's online spaces usually helps me reassess and recuperate.
Still, it's absolutely scary to be in my mid-30's and run into scenarios where I start to wonder if dementia/Alzheimer's is starting to manifest.
@@MomontheSpectrumMost likely autistic burnout
The dementia scare is so real, I really have days where I feel like every second word is hiding behind a door in my brain that is currently locked, and may or may not open at a later time q__q
The same thing happned when information of being trans being became more available, more people knew that they are trans, come out as trans and getting the health care we trans need to treat dysphoria and be ourselves
Also this what happened with autism, the more information the more people knew that they are autistic and getting help and accommodations with their autism.
Something we've been saying for the longest. Thanks for the info.
Love that this was unedited. And thanks for keeping us up to date. Stay well Taylor.
I just want to say that I appreciate the unedited format on this one despite suspecting how uncomfortable it must be to do it that way when I think about how uncomfortable I would be doing it that way. It is nice to get a glimpse of your humanity, and I suspect it makes it a lot more obvious that you’re not “fine” and just “faking autism” for clicks or whatever it is that people these days love to claim autistic people are faking their autism for.
I hope you found all your fidgets, too! I know at least one of them went on quite an adventure to the back of the room there! I hope it had a good time. 😂❤
I just wanted to say how much I appreciated your honesty and vulnerability in this one because I know how important it is to feel safe and accepted in the spaces you occupy. Also, great content!
You're doing great! Remember that double-empathy problem experiment where all the communication problems go away when the ND people are with other ND people? We're the other ND people in that experiment and we're right there with you.
Thanks!
I really appreciated this video, definitely needs to be more support for late diagnosed adults. Even the diagnosis process is so much harder once you’re over 18. I also appreciated your no edit style. When I’m stressed my words are often the first thing to go for me. I find myself relying on Eleven Labs voice overs in my videos sometimes when it’s really bad.
Thank you so much 😊 for being a content creator on autism and everything autism related
I just wanted to chime in and say that I so appreciate the unedited content. Thank you for sharing yourself authentically. I know it can be hard!
As always, WONDERFUL! Thank you Taylor!
More adult autism research hopefully will help create more adult appropriate support services that are recognised.
I advocate for people with high support needs autism. Autism needs to stay considerd a disability. I think people only see one side of the spectrum. The same people living similar lives because of where they are on the spectrum. There are people out there on the spectrum that have high support needs. If you dont great. But if wasnt a disibility peopele wouldnt get what they need. And there would litterly be autistic people out there starving, dying on the streets. People severly impacted have high support needs. If you advocate for this remember you’re wanting people who are autistic as well to suffer as were already not heard. To be thrown out of group homes and homless taken advantage of and possibly even kidnpaed and told we dont need support cause only autistic people fly to the moon. We will not get what we need or taken care of if this is not considered a disibility. We matter too!
Thanks 🙏 for all you do Taylor. Love ❤️ your channel and watching your videos.
I also like to go to the source when I see an article about research I'm interested in!! Thank you for highlighting this one.
I love Ono fidgets as much as you do. You were the first person (other than me) that I heard talking about the Ono roller back when that was the only fidget they made. I got the scroller and the slider thanks to you. Now I gave the fidget signets on my wishlist.
Thanks for letting us know about this! I will definitely read through the study & article more thoroughly (when I can "brain" better). How fantastic is this, though?! But also, how infuriatingly obvious.
I lose my words &/or trip over them too, especially if I'm in a room full of people. Too much auditory distraction.
Thank you so much for everything you do . The content is fantastic and cut yourself some slack .You help more people than you realize. Take Care.
love the unedited you. you're wonderful as you are. thank you for having the courage to share your true self with us, offering us permission to do the same.
I keep hearing everybody talk about “resources “. What are the supposed resources that I keep hearing about? I am just curious. I don’t think there is anything I really need as far as resources. But then again you never know. I am 60 years old and I realized I am autistic this past year. I will not be seeking an official diagnosis because I don’t feel like I need to give a stranger thousands of dollars to tell me something I already know.
Btw, there was a time when homosexuality was a “diagnosis “ as a mental illness. Thankfully , we are not there anymore. I’m hoping there will be a time when autism is just seen as another way of a brain processing the world we live in, and not something we have to be “diagnosed” with.
I have a resource guide you can download for free that’s a nice start for learning about available resources: www.momonthespectrum.life/barg
The diagnosis saved my cousin from being outright fired and homeless. The company did a disability LOA and that will turn to full retirement at age 65. My cousin has 3 more years for that.
The company wanted him gone. With the ASD diagnosis, they couldn't really do this. To cut their losses, the company threw money at him to go the hell away.
Had they done two accommodations, my cousin could have went back to work. His coworkers raised hell not wanting him back, and the company did the above to shut everyone up.
Yay for unedited!🎉 Edited videos are harder to watch. The cuts break my brain 😅 Honestly easier to watch people speaking unedited even if the “words are not wording”. More relatable and real too. Taylor you are the best! ❤
7:42 I believe cameras these days prefer to focus on faces. But some have a “product” focus mode that prioritizes something that a person presents in their hands.
Thank you for confirming your natural speech/thought pattern! Until recently I never understood why there were/are many pauses in thought until the AuDHD light went on. Systems thinking helps organize, but mostly preferred way is to be off the cuff, (suppose that is the ADHD side). Creative institutions must be filled with neurodivergent people, although seldom discussed as to why we are how we are...
Hello everyone! I just recently was unofficially diagnosed with autism. Since going to my therapist and discovering my autism, it’s been enlightening in some ways to put all the pieces together over my life that now makes sense. It also though feels very isolating because I don’t feel like I need to tell other people about me especially at work however I do feel very isolated and judged by how I react to events. Perhaps telling others would help. Does anyone know a resource group that I could connect with? I’d love to hear and see if anyone else feels the same on this journey. Thank you for the videos and wonderful content!
You’re welcome! Thanks so much for your comment
Great video about great news! Like a lot of other commenters, I appreciate your vulnerability and honesty in posting unedited videos. It’s a nice change of pace from so many other TH-camrs who don’t even show themselves taking a breath!
You mentioned at the beginning that, being a single mom, sometimes you don’t have time for editing. As mentioned above I love your style, but if you ever need a volunteer editor for very chill, light editing, I would be glad to help for free! No pressure of course!
I haven't even watched the video yet, but I was born in 1972 which means at this moment I am 52 years old. And while I lucked into a very cool creative job in my mid-twenties to mid-thirties, everything since then has been really tough.
I wish there were some, any, support for autistic adults in the UK. Everything is for children. I was diagnosed at age 59. I had to wait on a waiting list for five years to get an assessment. I have spent six decades feeling that everything that was wrong with me was my fault; everything I found difficult was because I was stupid/weak/defective, etc. etc. I was bounced around all sorts of mental health departments, given the wrong diagnoses, and then blamed when the treatments didn't work. There's no actual support available for autistic adults, especially anyone as old as me.
What I found with my cousin with ASD level I, providers loathe working with adults. My cousin has serious issues with body awareness and social skills. He was diagnosed at 50, which is rare where I live.
He could really use PT, OT as speech pathology, and would receive it IF he was a child. There are pediatric providers, but they stop working with clients once the client is 18 or 21 if they have a level III diagnosis.
So my cousin moves "funny", people think he's high, has poor small motor skills and issues with pragmatic speech. He's 63 now, and it's all getting worse because he can't mask as well anymore.
One doctor thought my cousin had Lewy Body Dementia due to the cluster of odd symptoms. He does not.
Insurance pays for you to survive, not thrive as an adult. ASD is considered a money pit diagnosis, and insurance will fight you tooth and nail for treatment.
The only way you thrive with ASD in the US, is if your family has connections and really deep pockets.
55 year old man here diagnosed 3 years ago. I always see my thoughts as an information highway. The words coming out seem to be hampered in speed quite a bit. Struggling with speech an words is recognizable a lot
I love there is better research coming out!
Oooohhhhh now I want signets!!! Do they have a release date? Only seeing the KS campaign that ended.
actually im not sure 😬totally would've been helpful for me to research that before posting the video. ha. but yes looks like just the pre-order right now www.kickstarter.com/projects/sleeklifedesign/ono-signets-a-force-to-fidget-with
FYI, they had to redesign them due to regulations on the size of magnetic items due to child safety. So the ones you can preorder are significantly larger than the demo ones in this video. I had to cancel my pledge cause I have tiny hands and the larger ones would not work well for me. So I’m super jealous of anyone who has the small prototype version!
@@CoreenMontagna looks like you can still order the smaller ones for now, through the late pre-order option :)
Something I found interesting about this study is that it's only including people who have a diagnosis in their insurance records. Many people pay out of pocket in the US for their evaluation either because insurance won't pay or because they don't want the diagnosis in their electronic chart. I haven't finished this thought yet but maybe someone else wants to take it and run with it?
I turn 45 in a few days and I need a official diagnosis but kind of have an unofficial one by my therapist and it's very obvious once you notice it and it's kind of weird realizing that was me my whole life and why it went away it did a lot of times. And now that I'm finally up from beneath the weighted blanket of depression I am back to being ridiculously ADHD as I would also been diagnosed with in addition to autism as a child if they did that testing at the time
I don't know if you know this, but as far as more resources for older Autistic adults, and Social security disability oftentimes being one of them, the U.S. Supreme Court just decided a case defining "severity" of disability but then devastated older Autistic adults by saying the claimant has the burden of proof and has to prove their disability is severe when most Autistic people due to being Autistic can't prove anything much less that. So, by saying that Neurotypical design in their recent opinion, just basically took away supports from vast numbers of older Autistic adults.
My cousin lost two SSDI appeals using autism as his main diagnosis. The judge threw them out in record time.
He won on the last appeal using a medical diagnosis and not mentioning autism. The new lawyer said that unless you are level III, the local judges throw the adult autism and ADHD cases out.
@@lilbatzThey are way off base and I'm willing to take them on a Federal Court ride over Autism. You can't have an 86 % National Autism unemployment rate, the levels of social exclusion, ostracization, and bullying, and almost 100 % Neurotypical refusal to interact with Autistic people, and the 40 + language differences that exist and sustain these arbitrary and capricious SSA decisions coming out. The ALJs don't have any Autism educational training and I have yet to see one single doctor SSA uses that has any Autism training. The U.S. is denying Autism claims to keep the Social Security budget to pay Neurotypical people's retirement benefits going as long as possible. It's an intentional system of oppression, Autism Apartheid, and human rights violation, and that's what it's all about. I will take the SSA claims on Autism ONLY, and not my other 30-40 diagnoses. I'll leave a legacy so this doesn't ever happen to anyone else who is Autistic. That's what I'll fight them for. So, TY for your comment, but it's really cowardly and doesn't help Autistic people at all.
@@lilbatz Also, if that was my lawyer, that Neurotypical lawyer should be reported for unethical Autism discrimination and and a lawyer malpractice claim filed on his E&O insurance, and that's what I would do if I had any lawyer like that who could not give effective assistance of counsel like that guy. It's pretty clear that lawyer doesn't really understand a thing about Autism. Autistic people want to hire Autistic lawyers, but there aren't any basically, so we can't ever get effective assistance of counsel, just Neurotypical dummies who give bad legal advice and don't really care are the fate of Autistic people. Autistic people don't want to hire Neurotypical lawyers. They're stupid.
I’m a 41 year old autistic adult 🧑
Gen X and older, just weren’t diagnosed. It’s that simple. Recently diagnosed Gen X here 👋
I wonder what kinds of insurance the article is referencing. I’m guessing private because I have state insurance where I live and you can’t get treatment for AFRID or even diagnosed with autism at my age unless you get lucky to find someone to help you and you’ll have to pay for it🤷♀️🤯
I’ve found an autism organization jn AZ that will take state insurance in regard to seeking a diagnosis, but I’m still on a waiting list and the assessment can take a few hours. I’m not sure I’ll ever get diagnosed, lol so I’m just waiting. Also, I wanted to say before finding this organization other places would only take cash not any kind of insurance. It’s crazy trying to get diagnosed as an adult.
@@valerieh5400I am next door to AZ in NM. I was on a wait list for UW Tacoma several years ago but moved out of state and didn’t have ins for awhile.
That is so super cool! So glad to hear - I hope this kind of attention comes to my neck of the woods at some point. I was looking at the Maine Society for Autism site today and they have one token autistic person on their board. Yikes.
unedited is so much better. autists love authenticity. let's hope all that tracking and harvesting doesn't get us on registries with the new administration. there are a handful of states with registries already. registries havent gone well for marginalized people in the past. be careful if you are formally diagnosed.
I was surprised to read in the study that in 2011 only 0.23% of the 12 million people had ASD (in 2022: 0.63%). That is way lower than the estimated 1% worldwide, which I have read online quite often in the last years. But 12 million out of the 335 million Americans is just 3,6%. And all Americans together are just 4,2% of the 8 billion humans on earth...
😅 I say >>focus
I really think the lack of diagnosis for adult autistics is that their GP or other "regular" doctor simply does not have the knowledge to pick up on those cues in someone that has learned to mask or "fit in". Most of them really don't even understand it in children. This is why I am hesitant to ask my nurse practitioner to look into this (the only way I could get diagnosed with provincial health coverage). I feel she didn't take me all that seriously about my physical and neurological/mental health issues when we finally decided to find ourselves a doctor. We have little choice in who our practitioner is either, as Saskatchewan is horrendously short on any kind of front-line doctors in the general practice field, and some just pump people through like cookies because that is how the government pays them.
I'm 23 years old and I'm an Autistic EPIC PLAYER Actor. EPIC PLAYERS is a neuro-inclusive theatre company in NYC that was founded in 2016 by a woman that is all about Inclusion.
Empower
Perform
Include
Create
I would definitely be doing the same thing, stumbling with words etc, in a live unedited video.
Love it
I just want to point out that long long ago... being left handed was seen as "somethings wrong with your child". Now after they did a study and showed that it was completely normal for people to have either a left or right hand as their main hand and nobody should be ashamed... the amount of left handed people (percentage wise) shot up by a HUGE percentage. Which everyone said the same thing about that as they are with autism. "Everyone's left handed nowadays, everyone just wants to be left handed to stand out." ... People tend to forget that those people just existed in the first place. They weren't trying to be anything different or new, they were just accepting who they are and trusting that those around them (whom they love and trust) accept them as they are.
Too bad common decency and respect isn't a thing anymore.
I’m so jealous that you got the small size before they had to get rid of them for a bigger size!
While our culture/society likes to think we care for the disadvantaged, the fact is that the "care" for the disadvantaged is centered on what government provides. This is a critical mistake we have made in how we interact with each other. This change goes back to the end of WW2 when government programs were ushered in. How did American's fly through the great depression? Have you ever heard someone tell their story of what happened? We have lost the value system that existed back then.
When a person hits 60 they become "unimportant" to society. The issues they face are ever increasing but the ability for society to see them is ever decreasing. We can force people to "care" by passing laws or trying to site science. But the bottom line, caring for another must come from the heart, and this cannot be forced. Government "caring" is a facade. There is no true heart-felt care the comes from the government. The Canadian government is a case-in-point. There are documented cases where military veterans, who very much want to live but need assistance, were advised to partake of the government service of "assisted $ui$ide". One case all the veteran needed was a wheel chair lift.
I'm facing similar issues. I have neuro-divergent stuff going on. ADHD, dyslexia, maybe autism. In the last three years I went through bladder cancer, bladder removal with a neobladder urinary diversion, septic shock, and divorce. All of these were going on at the same time during part of those three years. I have several chronic medical conditions now. But I have reached the end of the "medical communities compassion", ie - end of what insurance will pay for. I am not OK. I'm not sure I can continue to sustain my career. Government "compassion" will kick in (maybe) if I fail financially.
Whats the point? The point I'm trying to make is that, this side of heaven, human compassion is limited. Don't put your hope it.
www.foxnews.com/politics/canada-offered-assisted-suicide-paralympian-veteran-wanted-wheelchair-lift-installed-report
Exactly tell that to the NDIS in Australia they discriminate against neurodivergent adults and block the essential supports we need for everyday physical and mental health and wellbeing
My favourite fidget toy right now is a rubiks cube lol. I’m fixated on it and refuse to cheat or I’ll ruin it for myself lol
It still upsets me that they think the only Autistic adults that exist and that need support are those who are aging out of the child supports now. Those of us who are in our fifties and over still are not even really recognized as actually existing and in need of help. We had to grow up and navigate a vicious nt society with no help or resources or services at all as children and young adults and now that we are so exhausted and worn out from that effort, our needs are still being completely neglected by society.
I think the very useful info and the research you do far outweigh the slight (but annoying to you) pauses you make. Surely you consider your voice a talent, along with all others. It has a quality that is suitable for professional podcasting, as well as having a friendly, conversational lilt.
It's good to hear that there seems to be some foundational research getting done for all the autistic. Do you think it is coming out too slow? i think science is slow, but I guess that is necessary for the most complete and reliable information. Maybe the research being done back around 2011 will come in like a tide now, in these days. Like the amount of diagnoses going up 450% for the young adult demographic. Since autism is genetic, that discovery of young adults should translate to all ages, if only older adults were as strong with using the information superhighway.
Would 'data mining' be better than 'harvesting?'
I wonder if anyone would be interested in studying me so that I can get a free diagnosis. They probably want people that already have a diagnosis. They don't need more work along with the research.
Thanks for the work you do! Your channel is a hub.
Thank you for your very kind and supportive words.
As far as the research coming out too slow... at the moment I'm just grateful the research is happening. But there is a lot of work to do!
@@MomontheSpectrum I agree! From your poring over research (is that the correct, or is it 'pouring?') how robust or enthusiastic do you feel research is being done out there?
I'm new to your channel and I suspected myself for a very long time. And last night I had a meltdown because I really want the answers and I feel like a diagnosis and then follow up so it would be helpful but then I'm like would it really? I can spend the money but I feel like I won't because there's other things I want more I guess. I have great insurance I wish there were more resources.
The other really important factors explaining the rise in the diagnosis rate of autism (and other neurodevelopmental conditions):
- Poor understanding in the past meant fewer professionals were able to recognize the condition. It takes a while for health-related research to translate into diagnostic standards and then into widespread clinical practice.
- Greater stigma meant more adult caretakers (parents, teachers, etc.) would dismiss signs of the condition as misbehavior, or as the child acting 'normal' (normal to them because the parents likely are autistic, or have lots of autistic family members).
- Earlier definitions of the diagnostic criteria were rather restrictive in terms of who could get diagnosed, and were also very biased, such that a lot of people who didn't fit the bill of white males from affluent families wouldn't be identified correctly, plus the restricted criteria that only spotted high support need individuals.
- Our digital era rat race makes life harder for neurodivergent individuals in general, but especially for autistic people. This means more people cross the threshold into impairment / distress when in the past they might have been able to find some niche role that accommodated their way of perceiving, thinking, behaving and communicating.
- Earlier diagnostic criteria was exclusionary with respect to ADHD, which meant incomplete or incorrect diagnoses for people who experience both (large overlap)
Omg that toy!!!
The department of rehab is only helpful to us if we specifically know what type of job we want. There is no out of the box thinking.
Hello I'm also a content creator I do not edit my stuff 😅 . I just been recently sent in a loop. They're like you need this and this and this to get diagnosed. Entire loop around. I just transferred to a different town. I feel wiped out an exhausted for being on the phone for so long . I do not like the phone. The only diagnosis that was ever right was ADHD but then there was other components completely not there and I've been misdiagnosed with intellectual disorder which is crazy. I used to put me on antipsychotics which is also crazy. Made me really sick and gave me a lot of health issues. I am personally not happy with the mental health care system they need to take care of all kinds of different people correctly. They need to stop pretending they think they know people . And let people speak for themselves 🤬. Maybe someone can relate on here. I know in my heart that I have undiagnosed autism and it's really sad cuz I went through life struggling with everything . And people having a hard time understanding where I'm coming from 😭. The universe has been trying to tell me on a personal level what's up but it makes me incredibly sad that it's so late in life now 36. I can only do content creation jobs are a no go for me. Scheduling meetups with time is it credibly stressful. I literally have to go at my own pace and my own flow I cannot flow with this world and it's so challenging. And I'm sure so many people can relate to this. I'm not looking to be fixed I'm just going through my own thing right now. Expressing myself in hopes someone else will understand and not feel alone as well. Cuz I understand how it can feel isolating and lonely and so much more.
I got deleted 😢
💖
Ohhhhh
its well possible that through pollution there are more autistic people now. Nobody knows. There is scientific research pointing to pollution leading to more autism among those that can develop autistic brains from genetic roots.
I’m struggling today any things I can do or just a nice comment
Thanks for always being as authentic as possible, isn’t that one of the key aspirations for many of us, to be able to be the way we are? And it’s so hard! 🫶
Please don’t take the scientific term “data harvesting” personal, especially when reading research that’s supports your cause. If the word “harvest” somehow triggers you, perhaps you explore that within yourself, versus suggesting the scientific field change their terminology. 🤓 I think recognition of how certain words affect us is great, but it’s internal personal work if a research report uses a term that’s bothersome.
In psychology, when they refer to positive and negative, it’s not meaning good and bad, happy and sad. It means adding or removing. Negative symptoms means something is removed. Positive symptoms means something is added. Let’s not be offended by semantics when’s they hold the facts and have most power. Thanks for considering it!
Well put.