How Adult Autism Goes Undetected

Рет қаралды 256,424

Жыл бұрын

You’re an adult and you think you are autistic, what do you do? Autism, psychologically diagnosed as Autism Spectrum Disorder (ASD), is most commonly thought of as a developmental disorder diagnosed during childhood. In 2018, the CDC reported that 1 in 44 US children were diagnosed as autistic, but what happens when these kids grow up? And what about those that fell through a gap in the system and were under-reported. In this episode of Vitals, we hear from Kip Chow, an autistic advocate, educator, and someone that was officially diagnosed as autistic as an adult, on why they think the system for assessing autism is lacking. We also spoke to Dr. Lesley Cook, a clinical psychologist and an expert in the field of neurodiversity-affirming assessment and treatment of children, adolescents and adults.
🩺🥼 Vitals is a series that’s taking a new approach to health and medicine. Hosts Alok Patel, MD, and Sheena Williams RN are going beyond the headlines to answer your questions on the latest health topics. No judgment, no taboos. Just 100% science-based information.
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This episode of Vitals is licensed exclusively to KZbin.
Let’s Connect:
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Find our experts and hosts:
:: Sheena William, RN ::
Twitter: @Keepingitkinky1
Instagram: @keepingitkinky
:: Alok Patel, MD ::
Website: alokpatelmd.com/
Twitter: @AlokPatelMD
Instagram: @alokpatelmd
::Kip Chow::
Check out their TedxTalk on this topic: • Why are so many autist...
Twitter: @kipmchow
::Dr. Lesley Cook, PsyD::
Dr. Lesley Cook is a Licensed Clinical Psychologist at WellSpring Child and Family Psychology in Virginia
TikTok: @lesleypsyd
Research:
www.cdc.gov/ncbddd/autism/dat...
www.ncbi.nlm.nih.gov/pmc/arti...
www.autismspeaks.org/what-autism
www.ncbi.nlm.nih.gov/pmc/arti...
www.ncbi.nlm.nih.gov/pmc/arti...
www.ncbi.nlm.nih.gov/pmc/arti...
Helpful resources:
Check out ASAN for their comprehensive list of elected officials and policies:
autisticadvocacy.org/
To read more on neurodiversity and to find information and resources for newly diagnosed or recognized autistic women and nonbinary individuals, from an autistic-led organization, check out:
awnnetwork.org/
Resources in your state can be found here:
www.aane.org/
www.autismspeaks.org/resource...
Some suggested reading from our community:
- Neurotribes: The Legacy of Autism and the Future of Neurodiversity
- Loud Hands: Autistic People, Speaking
- Unmasking Autism: Discovering the New Faces of Neurodiversity
- In a Different Key: The Story of Autism
- All the Weight of Our Dreams: On Living Racialized Autism
- I Will Die on This Hill: Autistic Adults, Autism Parents, and the Children Who Deserve a Better World.

Пікірлер: 1 000

@myew Жыл бұрын

FYI - Many people who are Autistic hate the Autism Speaks organization, as they are not helpful and have even been harmful. Also, many people who are Autistic, such as myself, are perfectly fine with labels and even prefer being called Autistic or Aspie rather than a 'Person with Autism'.

@casey6556 Жыл бұрын

Seconding this comment as an Autistic person, both about language and about the so-called Autism Speaks.

@IExpectedBSJustNotThisMuchBS Жыл бұрын

Yes. While others are freed to say they have autism, I am autistic. Autism influences my experience of the world around me.

@cynthiacrawford6147 Жыл бұрын

I prefer Aspie

@GhostIntoTheFog Жыл бұрын

I didn’t even realize they linked to A$ in the description. They even cited their website as a source of their research. SMH.

@chrisjackson9626 Жыл бұрын

I'm with you, I don't care what label someone may use. It has no effect on the practicalities of getting through life on a daily basis.

@hunterG60k Жыл бұрын

While legal protection from being fired for being different is a great thing in theory, in practice the employer will just come up with some other excuse to get rid of you.

@ak5659 Жыл бұрын

Yes, the employer in question is literally getting paid to come up with a reason to fire you. He has unlimited time and resources to spend on doing this.

@ANNEMARGARET0319 Жыл бұрын

@Laura McKinley Truth 🥺

@NASAistheway Жыл бұрын

That happened to me a month ago. HR made up an excuse so there's no legal ramifications.

@AlexShiro Жыл бұрын

Yeah, but we can look for more suitable jobs with good reasons for doing so as well; I’d rather pick n pack in a factory with earplugs than work in retail lights and noise, and I’ve done both, and do neither now, but am finding my options become clearer with the understanding of my operating parameters.

@holyohnobutwait7260 Жыл бұрын

They typically do not NOT AT ALL care & want to get anyone out of the way of their egotistical narrative of the ladder they are trying to climb.

@gamineglass Жыл бұрын

I am over 70 and am in the process of being diagnosed. It is never too late to learn about who you are. Thank you for this video; I will share it

@bolinhong2598 11 ай бұрын

Get the best remedy to improve your child’s autistic condition from doctor Oyalo as his herbs have helped my child improve in speech and social skill very well. He now respond to name, point at what he wants and call mama/papa. God bless you doctor

@thatsdaniellelol 11 ай бұрын

@beatrixinchrist3355”get over”???? 🤨

@gamineglass 11 ай бұрын

@@lurch789 I don’t know what this means. What is success to you?

@Tawroset 10 ай бұрын

@@gamineglass Lurch sounds bitter, ignore him.

@cindytripp2506 9 ай бұрын

Me too!!!

@Zopicloned Жыл бұрын

I grew up undiagnosed and I had an awful time as a teenager, I was extremely depressed and anxious and pretty much gave up on life. None of my family acknowledged my disability even when professionals told them I needed to be tested. School didn't care either. I was diagnosed at age 20, and it took me 4 years to be diagnosed. I think there needs to be more funding for autistic adults, I missed so much support and there's just not much help for adults like me.

@LM-uq9nv Жыл бұрын

I feel like you are so fortunate. I'm about to turn 50. I raised an autistic child while being on the spectrum myself, having no idea why parenting seemed so much harder for me than my peers, whom I knew were not more intelligent, yet seemed to easily navigate the "normal" demands of life which hammered me over the head ( both my daughter and I are now undiagnosed adults, struggling with no access to help due to no access to assessment / diagnostic services.

@dambigfoot6844 Жыл бұрын

A lot of undiagnosed people feel the exact same way. Why didn’t anyone tell me about my social quirks. It can feel depressing to reflect on how I could have been different if a teacher sat me down and told me

@pbsvitals Жыл бұрын

Thank you so much for sharing your story. With more voices heard, we are hoping for more prompt resources in the near future. - Sheena Williams, RN

@carolinevivion9173 Жыл бұрын

I'm 49 and I've been struggling all my life. At school, at work, with other people. Still undiagnosed.... Will it change anything? And I'm so so tired!

@qveenora3 Жыл бұрын

🥺💔

@hypno_bunny Жыл бұрын

I grew up undiagnosed. The school wanted my brother tested for ADHD and when my mom took him to the doctor, for every assessment question they asked, my mom answered "No, but his sister does" until finally the doctor said, it sounds more like you need to bring your daughter in for assessment. She never did. It was the early 80's and neurodivergency was still very stigmatized. She didn't want a "special child" so she just ignored this advice. I'm now over 40 and realize I have BOTH ADHD and Autism (only compounding my struggles). But, because I was a girl and was the inattentive version of ADHD and masked so effectively, I just fell off the radar. I was just the girl "not applying myself" or "not using time wisely". So, of course with no help or understanding in school I began struggling. Until High School when I just couldn't take it anymore and dropped out. I left home at 15 and started doing street drugs (which I now realize was my attempt to self medicate). I have been clean for over 20 years now, but none of my symptoms ever went away. I just learned to mask even harder (which has given me depression and left me exhausted and fatigued constantly). So, here I am now 40 years old. I never got an education (because the system isn't set up for my style of learning) and I have only ever been able to get minimum wage jobs, that I STILL can't cope with. I'm uninsured because minimum wage jobs don't give insurance and even if and when they did, I still couldn't afford the co-pay for the doctors on my wages. I can barely make it paycheck to paycheck to just survive. No way I can afford to get ANY diagnoses. I am completely burnt out after masking for 40 years and at this point I would rather put a bullet through my head than have to "conform" another day, just to go to a low paying job. But without a diagnoses, I can't get on disability, and without money, I can't get that diagnoses. I have fallen through EVERY crack in society and no one cares.

@ZeeZeeNg Жыл бұрын

That is really sad and I wish that things could be better... 😓

@anneliediederiks Жыл бұрын

Big hug! 🤗

@xenacakes Жыл бұрын

I'm sorry society has failed you 😔 wishing you the strength and determination you need to keep on persevering because despite all your struggles and lack of support, you are still here and you are understanding yourself better than most. Keep on fighting and I wish for you to someday find the peace and comfort and stability you have been searching for. ❤️ 🙏

@hypno_bunny Жыл бұрын

@@toastedtcake2947 I will if you will. LOL

@kinpandun2464 Жыл бұрын

Maybe find other neurodivergent folks to rent a house together with? That would ease up on the amount of external pressures on you some. Self-diagnosed 36 year old here, and the best thing I ever did was snagging myself a fellow neurodivergent person as a spouse. The communication is so much easier w fellow ND people. Still difficult, but not AS hard.

@SheenaSpeaks Жыл бұрын

I'm not high functioning. I'm high masking.

@margilvi5890 8 ай бұрын

And high damaged too sadly

@PandaHopeful 3 ай бұрын

I also like to use the term "low support needs"

@KTplease 8 ай бұрын

I’m one of the little girls that learned quickly how to acquiesce to societal expectations and just recently (at 43) realized I’m autistic. It’s so FREEING, and I’m giving my child-self all the love and acceptance she deserved.

@pbsvitals 8 ай бұрын

Glad you are making up for lost time!

@Raul-gm1jc 9 ай бұрын

My family were all the time angry at me because they wanted to act normal but they never asked me if I was ok.

@imitationsofmyself 9 ай бұрын

Same with my family and extended family. They pick and chose which children to love/support. I was rejected and shunned. There are two kids in our family that show signs of autism and they are loved/accepted which I am very resentful about. Picking and choosing children to love results in resentful adults who have to pay hundreds of dollars to get the help/support they need. I'm getting tested this weekend.

@Safaura Жыл бұрын

Even in California, my spouse went to an authority referred to by our insurance and they were accessed as NOT having autism because they had a history of successful employment and romantic relationships.... they luckily were not so invalidated that they didn't* follow up with a second assessment. Going through a second assessment finally gave them a confirmed diagnosis.

@IExpectedBSJustNotThisMuchBS Жыл бұрын

I was successful at work and had 3 long-term relationships. I would not call those relationships successful because in retrospect my autism explains a lot of what I didn’t understand about the relationships. Meaning, it explained a lot about the communication failures; despite my attempts to communicate well, my partners frequently read into what I had to say and seemed to expect me to read their minds. What they were expecting was for me to understand indirect communication, which I don’t and I think they ascribed negative reasons for my not behaving as they thought I would in reaction to their communications. Difficult to do when two people are not truly understanding each other. I’m glad my therapist (was diagnosed by the trauma therapist I was seeing) eventually realised what was going on and so went through the diagnostic process with me.

@pbsvitals Жыл бұрын

That's the difficulty with diagnosing. Yes to validation! - Sheena Williams, RN

@itisdevonly Жыл бұрын

I have had successful relationships as well... with other autistic/neurodivergent people. Just because you're capable of forming relationships, doesn't mean you manage neurotypical style communication well. And just because you have relationships doesn't meant they are well-functioning or successful. It's such a frustrating assumption to be dismissive of autism just because the person in question has had relationships without knowing any further details. Similar with jobs. You don't know what kinds of work they had, what kind of accommodations they had in those jobs, or whether they simply suffered through the experience despite not functioning well in the environment.

@Jerry-yu7sr Жыл бұрын

@@pbsvitals This is why I want genetic diagnoses: "You have these variants, they put you at risk. We want to put you into therapy / observation . . . "

@G123. Жыл бұрын

I'm so sick of people having the Rain Man assumptions in their minds when they think of autism. I had that for years, which is why I ruled it out at first glance, and it wasn't until I had my son, who is also struggling to get diagnosed because it has become extremely politicized for us personally, that I did enough research to see how much this is deeply missed in adult women who grew up in the era of the 1990s or before who masked just enough that their symptoms were missed or labeled as something else (usually something worse and more frowned upon), and thus treated poorly by ignorant people for it. Mental health still is and will always be the last frontier for social justice. It receives the least acceptance and sincere understanding, as these people are not even being recognized. It is a toxic culture. Women aren't recognized because the male presentation is always seen as the prototype, and the female experience as reported first-hand is always taken with less credibility. It is. This is a fact we know in wider medicine in regards to biological factors for men and women. It's time to stop pretending this isn't happening.

@mdejesus718 Жыл бұрын

Thank you so much for this episode. It is so important to understand that Autism doesn't disappear in adults and that some differences don't need to be "fixed", just accepted and treated with respect.

@bolinhong2598 11 ай бұрын

@melissamiller2696 Жыл бұрын

I'm a female, self-diagnosed at 75. I'm learning more about myself through KZbin videos. I might get my doc to refer me for counseling. Too late to bother with formal diagnosis, not to mention costs. I could have used the help when I was working, though. I accomplished a lot, but didn't enjoy it or feel supported or liked. Never knew if people even liked me most of the time. Was just grateful they were nice or ignored me.

@G123. Жыл бұрын

I'm so sorry for your negative experiences. I relate at 41. We are failing women gravely, not that we aren't in so many other domains.

@susanlivingston3075 Жыл бұрын

I'm 75..... I could have written this....thanks

@LilChuunosuke Жыл бұрын

Seeing all my autistic seniors in the comments make me so sad, but also happy at the same time. I wish you could've found out at a younger age, but I'm also so glad you didn't have to live your entire life thinking something was "wrong" with you. You are beautiful, you are loved, and you are autistic. Your neurotype does not make you hard to love. I hope you're able to build up a community of people like yourself & can experience the joy of having autistic friends.

@EsmereldaPea Жыл бұрын

Just got my ADHD DX at 61 last year. If you also have ADHD, it can be with going through with a DX as medication had helped me tremendously. Strattera had eased the anxiety and depression a lot. Stimulants likely won't be prescribed because of our age, but if you suspect, it's worth it. I *think* Medicare will pay for the assessment.

@bolinhong2598 11 ай бұрын

@KaciCreates Жыл бұрын

I am 49 and was just diagnosed in January. It was a huge relief because I could finally stop feeling like a failed neurotypical who is bad at life. I’m currently recovering from years of burnout and multiple chronic illnesses and it helps so much to understand how masking, people pleasing, and self loathing has lead me here. I can finally accept who I am and it’s been life changing.

@pbsvitals Жыл бұрын

Kaci, I'm happy for you. So happy you're embracing how awesome you are! - Sheena Williams, RN

@bolinhong2598 11 ай бұрын

@sherisworld8552 7 ай бұрын

I am 49 and wish that I could find a way to get the diagnosis.

@Skoopyghost 4 ай бұрын

Don't get a diagnosed. You get the diagnosis because you are a freak to people. If you get the diagnosis. Enjoy barred from 99.9 of job.

@dambigfoot6844 Жыл бұрын

I was in speech class in elementary school and learning support until I graduated without anyone mentioning anything to me about Autism. Teachers would even joke about how I couldn’t make eye contact. On the playground as a very young kid I would go up and down the same slide alone and lined up 20 minutes before they blew the whistle to go back inside. The idea “I went through school and wasn’t diagnosed so I must not be” is wrong. The resources for early diagnosis still aren’t there and definitely weren’t there if you are an adult now

@bolinhong2598 11 ай бұрын

@mckenziebarrow9842 2 ай бұрын

In kindergarten I used to line up as soon as we came out for recess because "I want to be first." My mom had to convince me to play with the kids

@kikitauer Жыл бұрын

I got diagnosed at 42 (also ADHD the year before that) due to a massive autistic burnout, slight regression and consequent looking for answers. I atest that the self discovery and acceptance after diagnoses is absolute gamechanger. And ADHD meds lol.

@bolinhong2598 11 ай бұрын

@ahsokaventriss3268 4 ай бұрын

Are you in the USA? I’m a 46- year-old female, and I haven’t found anyone trained to diagnose adults, much less females. I’m desperate to find someone, ANYONE who can help me.

@willboler830 9 ай бұрын

I took the screener last year and scored pretty high on it. I realized that I've exhibited a lot of traits related to ASD and tried to get diagnosed. The specialist at the hospital refused to see me. The therapists kept asking me "what does it mean to you to be diagnosed?" Without the diagnosis, people don't believe me or say that it's all in my head. I've had career and relationship derailments over it, and me and both my parents agree I may be ASD. It's so frustrating.

@nancyhope2205 Жыл бұрын

Frankly I decided not to wait. I took the Baron-Cohen test online. I scored in the range. Since then I have watched videos by autistic people and had tremendous insights. It made a huge difference to confirm it for myself. I am 71 - I really don’t have the time to wait around.

@elvieann4949 Жыл бұрын

Thanks, just took it and scored a 42. After my three children were diagnosed with autism and one with ADHD, I started wondering about myself since so many of the things they were saying about my kids were also true for me.

@nancyhope2205 Жыл бұрын

@@elvieann4949 well done! Lots of videos out there for you. I wish you all the best.

@bolinhong2598 11 ай бұрын

@XOguitargurlOX Жыл бұрын

I liked how you spoke about neuro-divergency and the relationship of ADHD and autism...makes sense, but that rocked me a bit. I was diagnosed with ADHD last fall at 28. I'm still on the journey of better understanding myself and my needs, and this video gave me more to think about ❤

@bolinhong2598 11 ай бұрын

@curiousbystander9193 9 ай бұрын

adhd is diet/biome based.

@skiziskin Жыл бұрын

When i was a child I was simply not noticed. I wasn't non-verbal, but I had learned that when I did speak, I often found myself in trouble. I never understood social cues so I masked and I tried to be as inconspicuous as possible. Now I am retired and 66. I don't need a diagnosis at this point but I am happy to have learned a lot about myself and comfortable with the understanding that I am autistic. I am lucky that I worked much of my career in an organization that valued individuality and sought to put people in positions where they could leverage their strengths. Still, I took on responsibilities that were extremely stressful for me not knowing why I was so unhappy and unhealthy so much of the time. I survived because I had support for things I wasn't even really aware of in myself, and because one person did notice that I struggled with things like conference calls that other people had no trouble with and he offered me his office whenever he wasn't there. I am lucky to have made it all the way through the experience of not knowing why I was so misaligned with the world around me and now I feel like it's ok to be myself and drop the mask. The irony of all this is that I now live in Japan, where wearing actual, physical masks is so accepted that it is a constant presence in everybody around me. Also, masking in the way that neurodivergent people do it is a part of Japanese social norms so everybody is doing it to a greater extent than you see in other countries. It's a problem for Japanese people that they are pressured relentlessly to hide their personalities in public and work environments, but I think it also makes people more sensitized to the struggles other people experience. I feel more accepted here and I love my life in ways that I never allowed myself to do outside of Japan.

@bolinhong2598 11 ай бұрын

@IExpectedBSJustNotThisMuchBS Жыл бұрын

Here’s a tip: many autistic people have experienced quite a bit of trauma (particularly if not diagnosed as children, we can be experienced as difficult, be scapegoated, abused, bullied, etc.) and therapists might want to make sure that we have easy access to the door of their office. Meaning, I ought not have to walk past the therapist (in any way feel blocked) if the therapist triggers me in the session. I had a trauma therapist trigger me two times in one month (and he failed to notice this both times), and his chair was right next to the door with me sat opposite him. I was literally in panic mode because of the chair positions. Find a different room or reconfigured it to help the therapist also feel safe.

@normantouchet4185 Жыл бұрын

I agree to some extent, but in my case, I was mistreated, beat, lift playing by myself, n I decided at a very young age to work out , to extremes, to make sure no one ever beats me or others who can't defin them self's, in I'm small built , but mentally n body I'm extremely powerful. I don't back down from man or beast, God I'm humble, Jesus is my teacher, always has been, my best friend , lord over my life , the only true love I've ever had, it's where I put all my trust n Hope , this is not my world, I'm just passing through best way I can , I more look forward to The Lord Jesus to come n cleans me of all this world's filth , I'm content with who I am today , I feel love ,compassion, may not show it like others, it's like God sends people like me to see how a person who ls normal treats people like me.

@miriamrighter1666 Жыл бұрын

Therapists are taught to position their chair near the door so they can easily escape if a client gets aggressive.

@bolinhong2598 11 ай бұрын

@normantouchet4185 11 ай бұрын

Yes they are always making sure they're safe with me , for my past , it's another reason I stay away from people, places, so I do understand.

@dambigfoot6844 11 ай бұрын

You have to go to Therapists, Psychologists, Psychiatrists, Neurologists with an analytical point of view and with research. Have an idea of what you want from them and how they can help you achieve these things. They aren't your friends and many times they aren't even nice. A trauma therapist might feel anxious meeting new people talking about very personal traumatic experiences but you can feel like a cornered snake that has to strike to escape.

@feebieloo Жыл бұрын

Figuring out that I am autistic made my life 100% better.

@zacrintoul Жыл бұрын

When I figured it out it was like being able to take a fresh breath of air after being trapped under a blanket for too long. I was beating myself up and didn't understand why I had such problems functioning like a normal human being. Suspecting that I was autistic allowed me to focus on solving my problems instead of being depressed about my inability to function sometimes.I could look back on my life and it was like putting on a pair of glasses and finally seeing things properly. Things finally made sense. The struggles I had were all connected and there was a reason they weren't like the things other people struggled with growing up.

@pbsvitals Жыл бұрын

Thanks for sharing your experience! - Sheena Williams, RN

@bolinhong2598 11 ай бұрын

@zelowatch30 7 ай бұрын

How does that help? To me its a confirmation that Im doomed. I hate the idea of having this thing.

@ventrust7507 Жыл бұрын

In regards to the long waiting list for assessment it’s amazing an autistic child can spot the other autistic child in a large group in a matter of seconds.

@ventrust7507 Жыл бұрын

That’s goes for many autistic adults.

@bolinhong2598 11 ай бұрын

@LucarioBoricua 9 ай бұрын

I've actually been suspecting both autism and ADHD in myself, and realize a huge chunk of my online friends are one or both, I'd go as far as to say two-thirds of them all!

@IExpectedBSJustNotThisMuchBS Жыл бұрын

I was diagnosed in my early 50s after experiencing 3 long-term relationships where I couldn’t figure out why my partners behaved as they did-e.g., reading into what I said (very wrongly for the most part), etc. It took me a while after the diagnosis to realise that I miss most indirect communication. I cannot take a hint; I can sometimes tell when someone’s hinting but I can almost never figure out what they want. No doubt my partners thought I knew what they were saying and was simply choosing to ignore them. That would explain their reactions to me. I always knew that most people were indirect and though I understand the evolutionary reason for this, I don’t know why people feel so compelled to be so indirect today. And it’s almost impossible for me to be indirect and I think partners interpreted this as my being unnecessarily direct when it’s absolutely necessary because figuring out how to be direct is incredibly difficult for me in most situations (save for situations like, “Do I look fat in these jeans?” which I learned how to deal wit from watching stand up comedy) I do know that I can’t interpret indirect communication unless it is obviously insulting (and that is only because people provide many more clues that they’re being intentionally insulting). I actually have no idea how much of it goes over my head. I think it might be a lot. I might seem incredibly clueless, but I was a professional, considered to be astute, and found myself in a field where I could do well because my work required direct communication and people’s motivations at work are easier to figure out. My success likely underscored to my partners that I was jerking them around when I was clueless, obtuse. I think when I tried to check things out-figure out what was happening in our dynamic-they thought I was being disingenuous. Like, “You’re obviously smart and so _____.” Fill in some negative interpretation for my not responding as expected. I know I felt alien early in life; even in my teen years I would tell friends that I must have been hiding behind the door when the pamphlet on _____ was handed out. These were generally pamphlets on social interactions. Eventually everyone I know has told me I am “very weird.” This, despite liking me and finding the way I think interesting.

@monkeytennis7477 Жыл бұрын

Same here, friend. 😬

@mayanightstar Жыл бұрын

"I can tell when someone's hinting but I can never figure out what they want" wait this perfectly describes something I've struggled with as well WOAH now I actually feel a little better about it that it's not just me

@bolinhong2598 11 ай бұрын

@luminous3558 9 ай бұрын

@@mayanightstar This is fairly typical for autism. The ability to detect changes in tension/mood is pretty well developed but actually pinpointing the causes is very difficult. Its not impossible but it takes time and effort which isn't suitable to a conversation that requires a response in seconds not minutes. Understanding how communication works for neurotypical and autistic individuals has been a huge eye opener for me. Neurotypical people rely a lot on non verbal communication by design and the absence of it can be unnerving, they are also programmed to look for non verbal communication everywhere passively. Autists do not have this conversational autopilot that tells them to emote in certain ways that are normal. Both parties have 0 clue how the other or even they themselves work unless they looked into it, they can only assume that everyone works that way. So Neurotypicals will look for non verbals where there aren't any and be unnerved or misinterpret things that aren't intentional such as a permanent frown. Autists on the other hand are mostly oblivious to most of the stuff the other party is trying to convey to them non verbally. Its a disaster waiting to happen because eventually the Autist's behaviour will somehow upset the Neurotypical and they will get called out for being arrogant, manipulative, selfcentered or just permanently in a bad mood. The Autist won't understand this and will get rightfully upset at the false accusation. This type of conversational disaster is a core to a lot of trauma that autists face. Its very distressing to be effectively gaslit by people who aren't really even doing anything wrong. So a lot of autists especially those who aren't diagnosed yet will blame themselves.

@paulmryglod4802 7 ай бұрын

I relate to your experiences. You're not alone in this world trying to figure things out one data point at a time. I told my parents that my social issues were related to my brain wiring. Like a kid who is color blind, they were asking the kid to try to see colors with more effort, to pay closer attention. I have, through years of social study and context clues been able to pass as (mostly) normal, most of the time. I still don't have too many close friends as this is an area where unspoken communications are paramount for maintaining close ties, and I miss too many of them to keep groups of friends. Not for lack of trying on their part, or mine. It tough to keep inviting a dude to play basketball with your group when you eventually realize he will never jive with the game and the flow is messed up with him involved. That's kind of how I fit in to it.

@Ecable16 Жыл бұрын

Thank you for this!!!! I’m in tears… I left the medical field from burnout and I have been able to understand my autistic son after finding out I AM AUTISTIC…

@bolinhong2598 11 ай бұрын

@josephinetracy1485 10 ай бұрын

I still haven't the faintest idea what autism is. Apparently it's a type of mental retardation.

@ntebemosai 2 ай бұрын

I also left the medical field due to burn out, I didn't know it was autism until after my son's diagnosis.

@wolfdreams2000 Жыл бұрын

I recently saw a great TEDX talk on autism that i believe was done by Kip. I just turned 62, and in Dec I began to suspect that I'm autistic. So I'm reading and watching everything I can to learn if I'm on the right track, and according to each of the AQ tests I've taken to see if I'm in the ballpark have shown that it's "highly likely" that I am. Thanks so much!

@pbsvitals Жыл бұрын

Self identifying is just as powerful as an official diagnosis. Glad you were able to relate to Kip. - Sheena Williams, RN

@EsmereldaPea Жыл бұрын

Also 62 this year. Dxed with ADHD not quite a year ago. Would love to hear from seniors who HAVE gotten a DX late how it has helped. I was told by the psychologist it would be impossible and a waste of time.

@bolinhong2598 11 ай бұрын

@madgepickles 6 ай бұрын

This was an exceptionally well crafted video for such a short duration. It's a really challenging topic and there's so much misunderstanding out there. Whomever made this video should be very proud. Thank you

@jessiedawn123 Жыл бұрын

I was diagnosed at the end of February I just turned 33 in November I have been failed in so many ways but I’m so sad with how much time was lost to feeling alone

@bolinhong2598 11 ай бұрын

@tammybrown4410 Жыл бұрын

Thank you for this episode. I greatly appreciate it. Have a wonderful day.

@opalcolon4902 Жыл бұрын

Aspergers is an outdated term, it is also just included in ASD. My son masks hard and it is exhausting for him.

@ThalonRamacorn Жыл бұрын

Why is it an outdated term? I was diagnosed with aspergers a few years ago as an adult, and it made my understand myself way better. The term is still in use, and I also like the sound of it. Way better than saying "autistic spectrum", its too vague

@HeruWilliams Жыл бұрын

@@ThalonRamacorn EXACTLY when you add the concept of offense to something as objective as a definition or name you lose the connection between the two. Not all autistic people are the same yes but under the grounds that they actually have autistic traits. The change with Asperger’s syndrome exists simply for the concept of offense. You nailed it !

@TheLudmilita Жыл бұрын

@@ThalonRamacorn it’s outdated because the WHO and the rest of the official tools of diagnosis, like the DSM, were updated with the recent research and it stopped being an office diagnosis 10 years ago (in 2013). If a professional diagnoses someone with Asperger’s, it means that they haven’t informed themselves about any updates on the research for 10 years! The last tool that contained this diagnosis is the DSM-IV but it’s quite old, even the WHO has updated itself with the DSM-V. That’s why it’s offensive for some autists to use that term, because it’s the same as saying that you’re “high functioning”. It’s a spectrum, no one is high or low functioning. The grades that are used to diagnose someone help to understand how much help and support the autistic person needs. As life changes, our need for support also changes and the grade with which we’ve been diagnosed can also change. This is why Asperger’s is outdated, it’s no different from autism.

@ThalonRamacorn Жыл бұрын

@@TheLudmilita I see. But still it doesnt hurt to differenciate forms of autism in my opinion. I dont find any of this "offensive", and I find it kinda sad that people get offended by other people being "better in the same disability" :D I am perfectly capable to support myself with minimal help, so I do want to be classified differently than those who cannot even go to the toilet by themselves. To be honest, I find it more offensive to group us together like that, and not make differences on objective facts. edit: Also please dont misunderstand me, I dont tr to be arrogant with this, I just understand that there are some people who need less, and more support. There are people who are better in some areas, and there are people who are way under the normal "level". I know that a lot of people are way better in some areas than me, but I dont get offended just because they tell me so, because they are in face, better. People who get offended by that are just being jealous oversensitive and childish in my opinion...

@TheLudmilita Жыл бұрын

@@ThalonRamacorn btw, i know you’re not trying to be arrogant, I’m just pointing out that the knowledge that you have about autism is outdated and has no scientific background. And this is perfectly fine, because nobody knows anything about autism, even those who call themselves “specialists” in autism. It’s perfectly normal to have outdated and ignorant information due to the lack of education about autism. I was the same before I was diagnosed. Everyone can learn!

@DavidJamesHenry Жыл бұрын

I was told by multiple medical professionals that it is impossible to get diagnosed with autism as an adult. I'm shocked, honestly.

@JB-hj2vj Жыл бұрын

It depends a lot on the location. The services vary enormously.

@GhostIntoTheFog Жыл бұрын

Not impossible, just very difficult due to a chronic shortage of qualified adult-centered diagnosticians (especially ones who accept insurance).

@AlexShiro Жыл бұрын

It is not. But medically trained people are still flawed humans who really often know less than they like to think. I have several important ppl in my life who have also been Dx’d as adults but it was challenging to find the right psychological practice with the right attitude, and it was not cheap. It was several thousand dollars…

@WDBsirLocksight Жыл бұрын

That's because the adult medical field isn't trained in developmental challenges as it doesn't fit the medical model and partly "it was a child's thing so obviously a pediatricians scope". They fail to understand the continuum of care - when certain adults don't live up to there "local contexts expectations" and start to wonder and search - and recognize late stage profiles and the value of a reason for "social failure" including relationships and "vocational difficulty". Again in a medical model there's no room or explanation for these developmentally-characterized issues that stem from childhood.

@JB-hj2vj Жыл бұрын

@@WDBsirLocksight That explains why when I spoke to the medical practice I saw from 2016 to 2022 (in my 40s) about why I had not been identified as autistic, they started talking about what may have happened in the 1980s! Hello! We are not in 1987 any more.

@tracik1277 Жыл бұрын

FYI the word ‘neurodiversity’ refers to the entirety of human cognition styles, just as cultural diversity refers to the entirety of human cultures and just as biodiversity refers to the entirety of biological life on the planet. To be neurodivergent is to diverge from what is the predominant so called ‘norm’: one cannot have neurodiversity or be neurodiverse: a room full of people, or a school, or a group of board members can.

@joshuaerkman1444 Жыл бұрын

So on point.

@rahbeeuh Жыл бұрын

Exactly!

@second_second_ Жыл бұрын

Hmm so what should we call it then? There might be other stuff that haven't been discovered yet other than autism, adhd, etc

@bolinhong2598 11 ай бұрын

@arnbrandy 9 ай бұрын

Good to know! I always wondered why such a potentially demeaning word as "divergent" was used, instead of "diverse."

@MrsShirotora Жыл бұрын

In 2008 or 2009 I realized that autism explained my whole childhood and all the struggles I was having as a young adult. After I gave the nurse practitioner a long list of history and symptoms, my neurologist looked at all of it and said autism wasn't something a woman in her 20s could have. Just confidently wrong. They treated me like a hypochondriac for the rest of the time I was obligated to be their patient and never followed up on my developing autoimmune disease. Medical gaslighting and incompetence.

@bolinhong2598 11 ай бұрын

@nicolelittrell2937 Жыл бұрын

As a parent and grandparent of individuals with autism I find that using high functioning and lower functioning helps people understand them better. I understand that some people may find it offensive but, unfortunately many people have less exposure to those with autism or neuro divergent individuals and don't understand. I am not a teacher but work in a school and many of my coworkers see the children who are severely affected by autism and they see my son who has a college degree and can drive and believe he can't be autistic because he can do so much! I will then use the high functioning or lower functioning to those who are not as educated using it as an opportunity to teach them and explain that it is a spectrum disorder and how it can vary widely from person to person and many have learned to mask in order to get through life.

@bolinhong2598 11 ай бұрын

@curiousbystander9193 9 ай бұрын

diet runs in family stronger than genes

@mrahzzz 9 ай бұрын

yeah, this kind of bothers me. I don't get how so many aspies have associated it solely with some sort of intelligence ranking. It's about giving space for the autistic people who legitimately cannot function on their own in their day to day life, and, on the other end of the spectrum also acknowledging the existence and validating the diagnosis of the experience among people who "seem just like anyone else," who can do more in their day to day lives than a lower functioning autistic person. I think the extent of people's vitriol towards high vs low functioning is frustratingly short sighted and leaves the people with more difficulty behind... :/ I can understand if the phrasing bothers people, but lets find an analogous phrase that continues to include all aspies. I think I just get frustrated by it because it feels like a lot of the dislike for the phrase comes from high functioning individuals who don't care if lower functioning aspies get the short end of the stick from the term going away, or, what bothers me more, who get offended at being associated with lower functioning aspies. Feel free to check me if there's rephrasing that needs done here, people.

@curiousbystander9193 9 ай бұрын

@@mrahzzz these aren't aspies... the folks who, as you say....... "seem just like anyone else," ASD is evident before 5... expanded category to accommodate a sick biome society

@msaditu Жыл бұрын

Excellent video. Thank you for raising awareness about autism. It's important for people to understand that autistic people are not broken or diseased and they don’t need to be "cured." Differently-wired people need acceptance and to be treated equitably and with respect.

@bolinhong2598 11 ай бұрын

@diannedell8405 8 ай бұрын

what if they abuse you, like my brother did and I ended up more damaged than him. ok, I know not all autistic people abuse, but it is not uncommon.

@johncloutier298 9 ай бұрын

Thank you for a thoughtful, and non-judgmental, video on late diagnosis of ASD. I was diagnosed at 57 and it has changed my life for the better in many ways. I would encourage anyone who has come to the realization that they may be autistic to take the time and effort to seek testing by a qualified professional.

@bluedreams517 Жыл бұрын

I was at a wedding for my sibling and the BIL gave one of the most uncomfortable speech I've ever experienced (he obliviously offended our family in both raising my lil bro and our religious practices). While being horrified my therapist brain was also going....wait a sec, this sounds familiar. It sounds like autism. when the mom gave a public explanation with further examples of his "special communication style" that also sounded classically autistic I was almost certain this young man was living his life with undiagnosed autism. He'd been homeschooled for most of his childhood, so likely slipped through the radar from that. I told my bro to talk to the family to see he could get diagnosed in hopes it could help him better navigate the world around him. It can make a world of difference to have a name and thus resources/understanding open up to you.

@bolinhong2598 11 ай бұрын

@JimmyJaxJellyStax 11 ай бұрын

4:43 - this part hits me in the chest hard... absolutely spot on, the BEST way to describe high functioning autism's masking

@Noalmenclature Жыл бұрын

It's so important for clinicians to be trained in specialist diagnosis or treatment. It also highlights how frustrating it can be to have a general practitioner who thinks they know everything, and won't refer you to the people who are actually qualified to diagnose it.

@bolinhong2598 11 ай бұрын

@Hi_Im_Akward Жыл бұрын

I'm pleasantly surprised that PBS did a video on this from the perspective of autistic people. That is incredibly rare and autistic perspective is often dismissed. The majority of the time when autism is spoken about it's about how the symptoms manifest to affect others and autistic perspective and experience is not included. Basically a "by nurotypicals for nurotypicals" take. So thank you

@bolinhong2598 11 ай бұрын

@kelliv2995 4 ай бұрын

Your work is greatly valued ❤ Thank You

@Rollermonkey1 Жыл бұрын

One issue (for me personally) is that in the DSM IV, I was solidly in the category of having Asperger's Syndrome. However, in the DSM V, Asperger's is gone, and now I'm ASD. For me, the clinician was the one who explained to me that "Asperger's is a high-functioning form of autism". Not trying to offend anyone, just trying to live my own life with an adult Asperger's / ASD diagnosis.

@bolinhong2598 11 ай бұрын

@kimberlyhall999 6 ай бұрын

An explanation that I read is that it is not intended to be used to reclassify people with an existing diagnosis. It is only people getting newly diagnosed. There is no need to reclassify yourself. Unless you want to, of course. But there is no need to let anyone else reclassify you either. That’s not how it works.

@jaesynn2015 Жыл бұрын

I'm a little sketched out by the Autism Speaks endorsement in the description. I clicked on this, thinking it might be a good resource for family. But I'll keep looking.

@dlight9849 Жыл бұрын

I grew up in the 1970s when we were just labeled as "difficult" and despite showing a lot of autistic behavior since pre-school, my mother refused to get me a diagnosis and counseling, and teachers did nothing to help me as well. As an adult, I was constantly and consistently diagnosed with Depression, Anxiety, PTSD, and other illnesses. It wasn't until my late 40s that a LCSW said "hey, I think you might be on the spectrum" and I finally got the proper (and legal) diagnosis. Unfortunately, growing up with zero support leaves you unable to care for yourself and 'deal with things' as an adult. My job prognosis is poor, so I'll probably be on disability the rest of my life despite having a high IQ. In other words, you can't teach a dog new tricks and I'm forever damaged goods.

@pbsvitals Жыл бұрын

How has your life changed since you were diagnosed?

@bolinhong2598 11 ай бұрын

@REGjr 11 ай бұрын

Mine got me diagnosed and didn’t tell me. I only figured that out a week and a half ago. Doing the work of caring for a real disability, would have gotten me more attention than her. I’m 53 in less than a month. Around the third grade, she took me from psychiatrist to psychiatrist resulting in telling me she knew my IQ but wasn’t going to tell it to me because those things could be “overemphasized and inaccurate”. So I know who wished hers had been inaccurate enough to deemphasize mine. Also, I had terrible aim and couldn’t catch but somehow ended up in soccer (the ADHD and ASD standard recommendation). I feel you. Good luck with this nonsense. Adult regression is loss of executive function, so we probably need to individually proactively advise professionals we need therapeutic support for maintaining that. No idea what that would look like or I’d already be doing it for myself

@AutisticAwakeActivist 11 ай бұрын

Same. The damage is done re jobs because we had discrimination and no reasonable adjustments and people didn’t understand our traumas the bullying we suffered and lack of a normal support network

@AutisticAwakeActivist 11 ай бұрын

@Beatrix In Christ stop peddling bs why are you trolls everywhere get lost

@cjboyo Жыл бұрын

I grew up undiagnosed and it was obvious imao. My dad literally used to say “your school skills have always been above average, but your social skills have always been really behind.” Hmmmmm I WoNdEr wHy. I literally have been told I “talk like a professor” because I have always have talked with an abnormally big vocabulary. Someone doing well in school doesn’t mean they can’t be struggling!

@bolinhong2598 11 ай бұрын

@wendy-annpoorter1799 Ай бұрын

That was very informative!

@EsmereldaPea Жыл бұрын

When I had my ADHD evaluation last year, I asked about autism screening. I was told by the assessor they couldn't do an assessment because there was no one who could attest to my childhood and having an autism Dx at my age (61) wouldn't be helpful.

@second_second_ Жыл бұрын

The diagnosis criteria/milestones they have now probably include stuff until children's milestones only. They should have continue the milestones into adults milestones; although it's difficult because adults experiences vary

@bolinhong2598 11 ай бұрын

@JH-lz4dh 9 ай бұрын

That's completely wrong.

@nnylasoR 11 ай бұрын

This was very, very good - THANK YOU for putting this out into the world. ✨✊❤️‍🔥✨ What say you about [Asperger’s] no longer being recognized on it’s own, or *at all* in the DSM-5? I’ve been diagnosed with ADHD and have an upcoming ASD assessment (thank you, Jesus!) - but I am so confident about the criteria I relate to that I’ve already begun identifying as an AspieDHD (Asperger’s + ADHD) with a PDA profile.

@user-wn8nu3uc5y 11 ай бұрын

Asperger's is a way to say you're not as impaired as "other" autistics, which in of itself is misleading, incorrect and ableist. Hans Asperger was also allied with the nazis and sent the more disabled children to death camps. We don't use it anymore for a reason.

@mlf7 Ай бұрын

This is the first definition I've heard of neurodiversity that actually makes sense.

@TinEE189 9 ай бұрын

I really resonate with the idea of neurodivergence being the equivalent of biodiversity. That removes the abnormal vs. normal, it has me thinking in terms of a Bell Curve of neurodiversity. Where we are all encompassed in the "normal spectrum" it's just some fall into the more common middle and others the less common tails. That comforts me some because my whole life, I've pretty much seen myself as abnormal and tried to hide it - not all that successfully either.

@FOJO27 Жыл бұрын

Autism Speaks listed in the description as a source? Oh yikes... 🙅‍♂️

@GhostIntoTheFog Жыл бұрын

When another commenter pointed this out, they actually responded and said that, since they’ve met autistic people who like AS, they felt it was O.K. to include a link to their website. I find a lot of allistic people who don’t actually want to listen to autistic people dismiss the opinions and preferences of the majority by pulling out the autistic-people-aren’t-a-monolith card. In fact, people pull out that card to ignore the majority opinions and preferences of many minority groups.

@CatDad01 10 ай бұрын

Im 43 and ive known I was different my entire life.. I have been yelled at by every girlfriend I've ever had by not being intimate enough.. I have these breakdowns at work until I eventually end up quitting and then I get stuck... I've ended up homeless I never really understood why I can't get it together but everybody else can... I remember my mom taking me to the doctor when I was a kid and asking why I wear my socks inside out and it just finally dawned on me why she did that.. I don't know what to do. My entire life has been a struggle.. keep taking these tests online and they all say the same thing.. I don't know what to do next.. I've always just considered myself an introvert but I'm still an adult and I still have temper tantrums and freak out about smells.. seriously.. what is my next step here.

@katharinegates2917 9 ай бұрын

One of the first next steps might be to be kinder to yourself, now3 that you understand that your life has been on "hard mode". Easier said than done though!

@Marnee4191 4 ай бұрын

Very good video. Best I've seen of its kind. I was diagnosed with Autism Spectrum Disorder around age 50 and started therapy. Like the young man said, the therapy wasn't about fixing anything. Finally understanding myself was the most important thing. I was depressed from age 14 up until a couple of years ago. I actually said out loud a few months back that I was happy. I NEVER though I would say that. I didn't think people were ever actually happy. I thought they were just fooling themselves. My anxiety has gone from 8/10 to about 3/10. (It had been slowly but steadily getting worse all my life.)

@regi3756 2 ай бұрын

Great coverage about autism! My son has ASD and it has been trying to figure out what works and love him in the process as all of us grow together.

@yukifoxscales Жыл бұрын

Not so much a challenge as yet more validation. Even the doctor who handles my ADHD doesn't see a reason for me to be so concerned for being told I'm autistic, and I've tried to explain its a combination of self-validation; that I'm not crazy or pretending to be different, and validation so my mom will be supportive instead of dismissive - especially since she wants me to travel with her, and if I'm with my spouse, I'm okay most of the time, but without him, well... and its also very likely she is on the spectrum too, which adds to potential issues - since if she can manage things, obviously so can I.

@XSlimSxadyX Жыл бұрын

Thank u thank u thank u!! This is exactly why I’m trying to get a diagnosis!!! I want to have this officially confirmed so I don’t constantly feel like I’m “crazy”!!

@bolinhong2598 11 ай бұрын

@TransCanadaPhil 11 ай бұрын

I've had kind of the opposite response and situation. People have tried to diagnose me as autistic but I pretty much reject most notions of these mental health labels. I'm comfortable with who I am and I don't feel any sort of need or desire for external validation from society or others. I love my eccentric nature. I've been both criticized and adored in equal measure by people for it. I'm a bit of a free-thinker and kind of reject a lot of human-created categorisations as arbitrary, unimportant to me, and mostly a manifestation of the unfortunate human "need" to categorize knowledge. It's slicing-and-dicing the individual into systems of knowledge merely for the comfort of those with a "need" to reduce those individuals into a digestible system of knowledge that is "acceptable" for western society (lawmakers, police, and others with power). In contrast I'm fully comfortable with the "unknowable". I don't feel any kind of this unfortunate need to have an answer, even a wrong answer simply because most humans cannot tolerate "not knowing". Unprovable axiomatic systems of human knowledge like the so-called mental health professions are of no value to me. It's probably why I reject religion for this reason as well. Mental Health Diagnoses always feel like they are more for other people's benefit, those that cannot co-exist with the unknowable, not for my own benefit. I am the way I am, I like the way I am, I feel happy that I don't think like others. I don't feel the need to give others power over me by adopting their systems of classification. I define myself according to my own methods and models of understanding which are mine and mine alone. I wouldn't have it any other way. :-) I can never understand why people would want to be diagnosed. To completely hand over their intellectual Sovereignty to "The State"; with it's limited modes of understanding largely dictated by power and economic interests, not your interests. It's validating others power over you, their power and desire to put "you in your place". Validation has to come completely from within only!

@zelowatch30 7 ай бұрын

What do u want a teddy bear to cuddle with? There is nothing they can do. No cure yet but hopefully there will be. You guys just want special privilege.

@yukifoxscales 7 ай бұрын

@@zelowatch30 No, we just want a chance to thrive. Did you know that one of the problems is that we're super sensitive to things like medications? All my life, I thought I was just unable to take meds a doctor thought was necessary - if I'd known, then I could have just asked for smaller doses. And why would I want a cure? I have issues with things, but I've also got sharp senses, an abundance of creativity, a talent with numbers and logic.... sure, I'm prone to issues with meds, oversensory input, anxiety.... but I've plenty to compensate - or maybe those issues are to make it fair against people who might not have the problems, but don't have the gifts either.

@tsuntsunsweetie Жыл бұрын

I really enjoyed the compassion and language used throughout the video! Thank you to everyone included for this video!

@bolinhong2598 11 ай бұрын

@gryornlp9634 11 ай бұрын

Thank you for this video and representation of this topic and issue. Though the music and style of presentation made me really anxious :/. It felt High energy damatic

@Lebensfreude Жыл бұрын

Very informative, thanks!

@pmlbeirao Жыл бұрын

The problem with the concept of "neurodiversity" is that it doesn't describe the condition itself, it defines it solely as a deviation from the norm. In a society of autists, they would be "neurotypicals". I don't define myself as "diverse", I'm an autist.

@bolinhong2598 11 ай бұрын

@Alex-ki1yr Жыл бұрын

Thank you so much for this episode, very important. My son is diagnosed, trying to learn all that can

@biohackshq4072 8 ай бұрын

understanding and supporting individuals on the spectrum is a step towards creating a more inclusive and empathetic world. Keep up the great work!

@pbsvitals 8 ай бұрын

Agreed! And thank you.

@nattokki 6 ай бұрын

This was an amazing video. Thank you.

@pbsvitals 6 ай бұрын

Glad you enjoyed it!

@sideshowbob 7 ай бұрын

I'm 62, self "identified" at age 44, after reading a random article about "Asperger's Syndrome" (as it was known at the time in 2005), then going home & researching on the internet. It explained my whole life! It was such a relief! I am pretty "stereotypical" - engineer, high IQ, gifted at math, incredible photographic memory, socially awkward, difficult childhood in which I was considered a "problem child", hated by everyone in my life. Also likely have some ADHD & a lot of OCD, again, just based on my own self awareness. I am aware the distinction of "functioning" is offensive to many, usually the parents of "fully" autistic children, but it's important for me to make that distinction, regardless of what it's called. For me to simply tell people "I'm Autistic" or "I have Autism Spectrum Disorder" (I don't like the term "Disorder"), most folks will push back "but you appear so Normal, you have degrees & licenses in engineering, a long successful career, esteemed by colleagues, a series of stable long term relationships, a circle of friends, you have basic social skills, can hold a balanced conversation (most of the time). There's no way you are "disabled". Yes, I've learned to become a very good "masker". I've even had folks criticize me & say I'm just faking it & making it up, to excuse my anti social behavior (I am prone to rants & meltdowns when stressed / triggered), give myself a "crutch" to go thru life. Nope, they say I'm merely an Emotionally Abusive Unrepentant Sociopath with a Narcissistic Personality Disorder. This has even come up in my current relationship, my wife of 12 years has basically exhausted her patience with me & is now, after all these years, saying all of these same negative things about me, even tho I explained it / warned her about it on "Day 1" when we met 15 years ago, & try to explain what things (triggers / stressors) cause me antisocial behavior. As for seeking an official diagnosis, I've encountered the same "roadblocks" as others have mentioned in this comment thread. "We only work with children". "If we are going to take you on as an adult, you need to have a pressing need for a diagnosis, such as an employment discrimination issue or court custody battle". My wife wants us to go to marriage counseling, but based on my online research, it's of little value for me if the counselor is not aware of my "way of being", & consistent with that, some counselors we've talked to have said right off the bat the same thing as other detractors - I'm not officially diagnosed, so I am an "imposter" / "faking it" to garner a pass on doing any real relationship work, so counseling will be useless as I am basically regarded as an unwilling participant. So, I am stuck in a circle jerk. Personally, although I acknowledge I need to do 'work" on myself & am willing to engage in personal growth, I don't need a "shrink" to tell me who I am. I know myself all too freakin' well. Yes, an arrogant attitude, but I challenge anyone to go thru the nightmare that was my childhood & perceive the world as I do . . .

@pbsvitals 7 ай бұрын

Thanks for sharing your experience. I'm glad you pointed out one especially important thing: if a counselor or therapist does not have a pretty good understanding of ASD, it is very hard for them to help. Unfortunately there are not enough of those people out there... but they exist! Good luck in your search.

@CookieBear187 10 ай бұрын

I am 25 and trying to get tested. I struggled so much in college because the workload was a lot and I had to develop new ways of learning because I couldn’t keep up with the class or understand in the ways the professors taught. I hope to get tested and diagnosed before grad school so I can get the accommodations I need and not feel rushed or fail classes.

@josephinetracy1485 10 ай бұрын

I still haven't the faintest idea what autism is. Apparently it's a type of mental retardation.

@jadesisk1852 8 ай бұрын

How does autism and IQ work together? I talked to my psychologist about having issue talking with people and panic attacks, not being able to get anything done. Went to get basic neurological testing, they told my IQ scores being low to mid 120s means "too smart" to need an ADHD or autism assessment. I was diagnosed as Social Anxiety Disorder, Panic Disorder, Mood Disorder Not Otherwise Specified and been doing therapy for the last year. It's weird cause when therapist talk about Social Anxiety, that sounds like a different issue than how I feel, so therapy hasn't gone well and med make me feel awful, and I'm questioning now if I even have anxiety.

@pbsvitals 8 ай бұрын

You've gotten some bad advice; no IQ score disqualifies a person from being diagnosed with ASD or ADHD. It's actually quite common for highly intelligent individuals to wrestle with these conditions. Your best bet of getting a careful diagnosis is to be evaluated by someone with a lot of experience with these conditions. There are also a lot of people publically and semi-publically discussing their own experiences, online. As one step, you might want to check out the diagnostician directory and the open support groups at the Asperger/Autism Network (www.aane.org/)

@s0cializedpsych0path 7 ай бұрын

What I got from my Dx, was the ability to forgive myself for all the things I would be constantly given a hard time about, that I wasn't doing on purpose.... and sometimes didn't even realize I was doing them at all! I beat myself up over them for 36 years, because my mother used to beat me up over them. Now, I know what Ive been trying to hide all my life, and no longer do so. Im more likely to bend that rule for a stranger..... but absolutely not for my friends and family. Only if they are in pain and need compassion.

@gocelotspice5766 Жыл бұрын

I’m a teenager in the process of getting assessed for autism. I never got tested as a kid, although I’ve had people think I may be on the spectrum throughout my life. I do think being very good at masking and also afab is why I’ve been missed.

@pbsvitals Жыл бұрын

Good luck! What made you and your family decide to go through the testing now, as a teenager?

@bolinhong2598 11 ай бұрын

@conniegarvie 11 ай бұрын

I'm 64 and cannot find a single provider to evaluate and diagnose me in the greater Seattle, WA area. The University of Washington tells adults to simply self-diagnose because they don't have anyone to do the assessments!

@ehzimmer 27 күн бұрын

How can a person who is autistic, who calls themselves "a little on the spectrum," be offending themselves? I call myself "a little on the spectrum" as a shorthand to help other people understand why I appear "normal"-ish on the surface, but sometimes need help they don't expect people to need. I notice that "a little on the spectrum" is a phrase that seems to put people at ease and gives me an opening to ask for basic explanations about what's going on. It's helpful. Like Kip Chow, I accept that some masking is necessary. It's unreasonable (and narcissistic) to expect everyone should understand my experience. I think this is true for everyone, whether autistic or not. Most people don't (and won't) understand us, other than a few close and trusted loved ones.

@KarenGagne-hx6su 6 ай бұрын

Thank you for this...

@DDW510 7 ай бұрын

I was diagnosed at 49 with Asperger's. This hasn't really changed my life, but it's given me peace of mind and acceptance of my differences. I'm no longer embarrassed about needing alone time and just recently turned down an invitation to a cocktail party at work as small talk is torture.

@pbsvitals 7 ай бұрын

Congratulations! It sounds like it's helped you be more yourself and happy with that. Some people never get there, with or without ASD!

@ali_kingston_university 9 ай бұрын

Only autistic people could tell I was autistic

@PaulaZF 7 ай бұрын

It recently occurred to me that my husband may be on the spectrum. He was diagnosed with ADHD about 10 years ago and started medication which has really helped. But there’s a way he has of not being able to connect emotionally. Any meaningful conversation just stops and he doesn’t understand no matter how I explain it. But he would never consider that diagnosis for himself. He won’t go see a therapist. I’m looking around to see what’s next.

@PurpleRhymesWithOrange Ай бұрын

Tell me all about it. I was diagnosed in 2008 and I was 44 by that time. My therapist said, "huh, I wonder how everyone missed that". When I showed my diagnosis to all my friends the universal response was, "yeah, that explains a lot."

@dramonmaster222 Жыл бұрын

As someone with an autistic niece, this was definitely educational.

@nancybartley4610 Жыл бұрын

I am on the spectrum and high functioning. If someone said i was a little bit on the spectrum, they would not be wrong. I would only be offended if they said it to hurt or demean me.

@bolinhong2598 11 ай бұрын

@morganviolethart4044 8 ай бұрын

You must be diagnosed and evaluated for autism in order to get a full assessment as an adult. Any therapist can give a diagnosis of autism but you must be referred out to someone who does autism evaluations, which means they must have a PhD AND be willing and have EXPERIENCE in doing ones for adults. I managed to get very lucky finding one who only worked with adults and whose main experience in autism assesment was with them, and that was only because she had experience for only a few years. It cost me 1600 dollars out of pocket paid in 4 installments, not thousands of dollars thankfully. We could have gone with the cheaper 1000 dollar option (which is pretty standard for adult evaluations), but we got a more detailed written evaluation as well as recommendations for treatment and informational resources by going with the more expensive option. And I've very lucky I even had the option considering how little resources there are for adults with autism in Maryland.

@pbsvitals 8 ай бұрын

Is is really disturbing how few truly knowledgeable and experienced professionals are working in this field.

@mayatara1980 9 ай бұрын

I only got diagnosed a couple years ago, at 40 years old, although the first signs were detected when I was 2 (didn't speak a sound, blank stared, stimmed with my hands). But forced socialization and strong parental conditioning turned me into a less obvious autistic, so nobody cared to follow up on that suspicion. I kept going to the doctor with complains of lots of anxiety, stress, depression, when I was just a kid, but the doctors just recommended sunshine and vitamins. I really feel angry that nobody saw me for who I was and that it took so long for me to realize what "was wrong with me" and finally come to terms with it. But better late than never. I am glad I found my tribe and understand myself better now than I ever did.

@AdeleiTeillana 8 ай бұрын

As an adult female with Aperger's/high functioning autism, it's SUPER annoying to have idiots saying that "high functioning" is offensive to us. It's bad enough that the DSM got rid of the Asperger's diagnosis without you encouraging people to drop the high-functioning part. I have lived on my own since I went to college, I moved to China not knowing a soul there to work with orphans for several years, I've been quickly promoted to manager or assistant-manager at every job I've ever had and I'm currently going into my last year of law school at an Ivy League school with a job lined up on Wall Street after graduation. No, I've never really had any friends and yes I deal with sensory issues, but it's not fair to the people (and their families) who really struggle with it to lump people like me who have had it relatively easy in with those who have not. It makes light of their experiences to just call us all "autistic" or "on the spectrum". PLEASE use the term "high functioning". I can understand not wanting to use "low functioning", but it's not an insult to use "high functioning". I am well aware that I've had a much easier life than many have and it's not dismissing the issues I do have to use "high functioning".

@johnathanrhoades7751 8 ай бұрын

Does the “low support needs” vs “high support needs” work for you? I think a lot of “low support needs” people still don’t feel like they function super well and “high functioning” can make them feel like they SHOULD be able to function “normally”. I understand that the way things are now could result in muddying the waters, but there are still different diagnoses (type 1, type 2, type 3) that if better understood would make that distinction between someone like me who can (mostly) hold a job and take care of myself and someone like my cousin who cannot at all still meaningful.

@LM-uq9nv Жыл бұрын

I've been struggling to find resources for assessment and diagnosis. Autism speaks has not been of any more help to me than I have been to myself. Without a diagnosis, I have no access to support resources. My symptoms have suddenly become much harder to cope with over the past year. I am genuinely frightened over the pace at which my life is unraveling. When I express my concerns, I am not taken seriously, because I had successfully masked the degree to which I struggled thus far. I qualify for medicaid, based on income, yet there are no adult diagnostic services in my state. How an I supposed to afford the out of pocket costs of a diagnosis in another state? Why is the burden on me to hunt down diagnostic resources and finance them before I can get the help that I need to make all of that happen? Are there grounds for an ADA lawsuit against the state?

@pbsvitals Жыл бұрын

Sorry to hear you're going through this kind of struggle. The medical system, bills and insurance can be huge roadblocks. We've got a few different resources listed in the episode description, and I know many people have found resources and other support, through online communities. Would love to hear what people here think has been helpful to them.

@JB-hj2vj Жыл бұрын

@@pbsvitals It varies enormously from one location to another.

@GhostIntoTheFog Жыл бұрын

@L M There are no resources in your area, because phony charities, like Autism Speaks, lobby against resources we actually want and need and in favor of autistic conversion therapy (a.k.a. applied behavior analysis).

@bolinhong2598 11 ай бұрын

@DonnaJaneSwallow43 Жыл бұрын

Thanks for this. I love the circle of variants, giving a unique manifestation of autism in each individual, rather than the spectrum model. I think I understand it better now.

@bolinhong2598 11 ай бұрын

@Julia-ln5og 7 ай бұрын

When I was diagnosed I was told I was "barely autistic", i felt so invalidated and like my struggles weren't as important. I am a bit better at social interactions then a lot of people with autism but i still don't understand people, don't get social cues and get upset with people often.

@marcusrosales3344 9 ай бұрын

I always took high functioning to mean I can be self-sufficient, but it does not mean I do not struggle with symptoms... When my symptoms get bad, I almost can not be self-sufficient. If we are being real, some of us do have it more "severe" than others. I think the term is fine, personally. In fact, being so sensitive to what we do and don't call everything seems to only make more people more sensitive to what they are called.

@katharinegates2917 9 ай бұрын

I've noticed "high support needs" and "low support needs" as less stigmatizing alternatives to the functioning terminology.

@armadaministries6283 Жыл бұрын

I was just diagnosed at age 40 after child protective services took all 5 of my (autistic) children basically because they they thought we were “odd” and “bizarre”….they have been in foster homes for 7 months now 4 hours away here in Virginia 😪💔

@bolinhong2598 11 ай бұрын

@jonniemae818 8 ай бұрын

Thank you. ❤

@sharonaumani8827 8 ай бұрын

Just like with ADHD 15 years ago, I am finding out how little I have actually known about "The Spectrum". I don't think I am on the spectrum (?), yet I certainly share a LOT of traits that likely overlaps with what I strongly identify with, "Cognitive Disengagement Syndrome" and CPTSD, ADHD-C, Depression/Anxiety [gets pretty confusing with all of the overlap].

@relentlessrhythm2774 Жыл бұрын

As a late diagnosed autistic woman, this is beautifully said! The spectrum is not linear and we are not in need of being cured.

@bolinhong2598 11 ай бұрын

@josephinetracy1485 10 ай бұрын

I still haven't the faintest idea what autism is. Apparently it's a type of mental retardation.

@jmfs3497 11 ай бұрын

I am pushing 50 years old and noticing patterns that line with the autism spectrum. I feel relieved and supported for the first time in my life. Everything makes sense. I thought I was my mask, and a bad one at that. I don't want to feel bad for being myself and preferring my own freedom. I don't need to enjoy crowds to be "normal". I like my hobbies and I like hearing about other people's hobbies, too, but it doesn't need to be a party.

@RoyHoy 8 ай бұрын

Self-diagnosis should be valid for autism!

@doremirse9950 7 ай бұрын

No it shouldn't

@RoyHoy 7 ай бұрын

@@doremirse9950 Yes it should! A person knows themselves better than anyone else.

@julieberry2793 5 ай бұрын

Just learning this is a possibility for me. I will say sounds are big for me and the thumping, beating sound in your video and even some of the music has caused me to turn off this video. Rethink this please!

@aimlesslegs623 9 ай бұрын

I'm autistic and I have absolutely no issue with people saying they're "on the spectrum". It's just another synonym for autism. Of course if people use it in a context where they don't seriously mean it--similar to the way people say they're "so OCD" because they like to keep their room clean--that can be a little irritating or even offensive. But there are many contexts in which even this kind of language wouldn't bother me at all. As long as the person using it has good intentions it's fine by me. Other autistic people may differ on this usage, but I've never heard of a single autistic person having an issue with the phrase "on the spectrum" in and of itself. (In fact, we like to think of autism as a spectrum in order to highlight the idea that there are lots of different ways autism can look, lots of different presentations and degrees of impairment, and not everyone who is autistic "seems" autistic, since many people, especially adults, have learned to "mask" and pretend to be neurotypical).

@paulgilson2347 11 ай бұрын

I'm almost 40 and am clearly autistic but I wonder, because I've learnt how to get by and can function enough that I can support myself and be happy do I need an official diagnoses? I've had problems mainly due to noise complaints from meltdowns in my flat or similar at work, but every time I've been pulled up on those moments I then know to stop it and just sort of learn that way. I don't think I'll ever master eye contact though and I'd love to stop taking things so literally and for people not to think I'm aloof but it's not the end of the world as they say.

@minimalistandautisticgirl Жыл бұрын

Thank you!

@homo-sapiens-dubium Жыл бұрын

Being autistic is not a disease or caused by any substance X. Its a phenotype - and inherited, just like having blue eyes. It is rare (about 1-3% of people), but that also means it established itself over hundred thousand of years. It has a place among human variations - just like being non-heterosexual. As autistic people we deserve to be proud of it & for it to be recognized by society as such.

@WDBsirLocksight Жыл бұрын

Phenotypes are reserved for the characteristic profile of genetic disorders and diseases. Autism as yet has a plethora of gene loci. If the person has a known genetic anomaly perhaps then the autism becomes a known genetic autism or autism phenotype not just autism profile. By the way "hundreds of thousands of years" is dogmatic and has no basis in science. Did you count the years back to the start of the millenia....? It's easy that's only 2000 years. Did you observe the last 10-80, 000 years...? No Did the scientists observe those years elapse above...? No I rest my case.

@raspberrytaegi Жыл бұрын

❤

@bolinhong2598 11 ай бұрын

@josephinetracy1485 10 ай бұрын

I still haven't the faintest idea what autism is. Apparently it's a type of mental retardation.

@saturationstation1446 9 ай бұрын

there's approximately zero proof of just about anything being "genetically inherited" because every process in our bodies is entirely effected by the environments they grow in. social darwinism is eugenics. and thats what you say you believe in when you parrot unscientific notions like inherited behavioral issues being genetic instead of environmentally induced

@whitecat1226 8 ай бұрын

So true about the manual he talks about. When I was young I always questioned how everybody can do stuff like they know everything. Well, I have to literally ask or copy people on what to do

@GarbageKnight 5 ай бұрын

When i was a child, it was hard to make friends. So I asked a boy one day. Why doesn't anyone like me. He said, Your different. I asked How. He said Just different. Years later someone said, you act like you have autism. I knew i had quirks, and certain things i did that were not like regular people. I used to neatly fold my trash, so it it fit better in the trash bag, and i could put more trash in the bag that way. LOL i can see now how some might look at that. i thought it was logical, and smart. not weird. But i finally got tested, when my brothers wife, asked him if i had autism, and he said she also suspects i was autistic. Well surprise, no surprise really i was. My therapist said i have learned to mask and blend well, that i have found many ways to navigate issues, and there is really nothing more she could do for me, so that lasted maybe 4 sessions with her. So now i just keep doing what i do. has it made my life easier knowing...no its the same, knowing defiantly answered questions i had about myself.

@LiLesah 10 ай бұрын

I’m a 39 year old woman, who might be autistic or neurodivergent… So I made an appointment with a psychiatrist to start the process for an assessment - she literally told me “what is the point of knowing” & wanted to push depression meds that have never worked for me… I have both variations of the MTHFR gene mutation... I have been diagnosed with social anxiety.... I started kindergarten at six years old because I didn’t interact or play with other children - I was in my own imaginary world.... kids on the bus used to call me mute. Highly sensitive person... The signs were all there, nobody cared to see them - or cares to see them now. So many women have fallen thru the cracks feeling broken

@ildyivy 8 ай бұрын

Unbelievable.

@hawkeyenextgen7117 Жыл бұрын

The problem with having Autism is that most people in society hold us to a double standard. Students and teachers alike expect us Autists to act appropriate while they think they have an excuse not to. Most of us are pigeonholed into special ed classes merely because of our diagnosis. If you don't treat an Autist like a human being, it's likely they'll never grow into one.

@bolinhong2598 11 ай бұрын

@josephinetracy1485 10 ай бұрын

I still haven't the faintest idea what autism is. Apparently it's a type of mental retardation.

@wangtoriojackson4315 Жыл бұрын

"Autism Spectrum Disorder is not a disorder." "Neurodivergence isn't a divergence." Uhh, I'm sorry, but what? I don't think that's how it works.

@tracik1277 Жыл бұрын

If you actually want to learn about it look up articles on the Neurodiversity Paradigm.

@rahbeeuh Жыл бұрын

People don't like to call it a disorder even though that's actually what it is. It's not within the same order of operations as the neuromajority hence dis-order.

@tracik1277 Жыл бұрын

@@rahbeeuh People don’t like to admit to bigotry, but that’s what it is. It is outside of the attitude of the predominant majority of decent human beings.

@susanlivingston3075 Жыл бұрын

It's finding out you're a zebra instead of an abnormal horse.

@ay-tj7pj Жыл бұрын

different doesn't always mean you are not normal

@Helfirehydra 8 күн бұрын

It took me years to finally get control of my sensory input, where it’s more of a super power where I can hear things that people don’t. I can feel things that people don’t every single rock in pebble I step on I feel. If there’s a rock stuck in my boot, it will bother me for the entire day And if I’m wearing clothes that is just feels weird. I will literally take them off as soon as possible. It took me many years to be kind of normal, and I remember to cope with it in high school. I always had a hat or hood up to reduce sound a little bit. So I don’t hear every single noise in the hallway Or six different conversations at once

@ChrysSpecter 7 ай бұрын

I got diagnosed at 29 and almost extinguished myself from life multiple times growing up. I wonder how much the ASD suicide statistics would change if many of us weren't missed as kids.

@Nebraska-CatFanDanOzzy Жыл бұрын

Thank you so much for this. I have thought that I have had Asperger’s ever since my daughter was diagnosed with Autism. Where in Nebraska can I get tested for this?

@jessierollstin4853 Жыл бұрын

If you are in western Nebraska there is a testing center in Fort Collins Colorado. Northern Colorado Assessment Center. If you are in eastern Nebraska I would Google testing facilities and look at reviews.

@GhostIntoTheFog Жыл бұрын

You won’t find anyone in the United States willing to officially diagnose you with “Asperger’s.” It a dead label with a lot of ableist baggage. If you receive a diagnosis, it will be for Autism Spectrum Disorder (ASD).

@Nebraska-CatFanDanOzzy Жыл бұрын

I am closer to Lincoln/ Omaha.