I would like to add that as Autistics age, our "symptoms" ( I prefer the word "features" but I am attempting to be clear) can change. I used to rock my head back and forth to soothe and stim and go to sleep. I don't do that as an adult very much. (Course I tried it after diagnosis and cried for joy but I digress.) Joe Biel, Autistic author of Good Trouble and the Autism FAQ wrote that the low life expectancy for us is due to social isolation. It's important to him that we all have a few friends. Like formal diagnosis, it's not always possible. Once you know the sensitivities you have and the things you struggle with, you can make your life better. I say friends are an enhancement in life, not a requirement.
the changing of "symptoms" as we age I feel correlates directly with increased responsabilty and demands. Growing up with a mom, that is neurotypical and a very orderly person, gave me a very stable environment. This was not easy when I myself had to handle my own environment later in life. An then also handling my childrens needs on top of my own has shown me my limits and where I myself need support. Hugs from Norway 😘😘
An AuDHD advocating for themselves, is like describing Blue Skies to someone in Rose colored sunglasses. Claire thank you for the video. I was officially diagnosed ASD at 47 years old. In third grade when I was diagnosed Dyslexic & ADD, I was not taught to advocate for myself. I was locked in a box, & not the metaphoric kind! (John Marshall Elementary school Wausau Wisconsin mid-80s) Spending time here & with other supportive channels (Orion, Taylor, Sam...) has helped me gain conference, not just the knowledge to pursue an assessment & understanding.
I love the glasses analogy. I like to explain to people that for me now learning I am autistic at 38 years old is like living my whole life in a world where everyone's brains run on Microsoft and now discovering I am running on Linux. No wonder there are communication errors. Nothing "wrong" with each "computer (brain)", just running on different software. ;)
I’m 63 year old female whose 38 year old son was diagnosed last year. As I went down the rabbit hole, I came to the undeniable conclusion that I am autistic as well. In my situation I am retired and have no interest in more formal schooling, so I won’t be seeking a formal diagnosis. If I were younger and working or in school . Definitely. My self diagnosis has made my life make soooo much sense now. I was diagnosed BP and Bipolar 2. I don’t believe the BP and am starting to question the Bipolar. But I definitely won’t change any meds. I am still learning and paying attention to all my masking and alexithymia. I love that I know I am autistic. I understand myself and like myself much better. Thank you Claire for all you do.
Hey, this channel is among my favorites for covering this subject, as well as her other focuses in the larger picture of living well by enjoying special interests. Like yourself, and many others, I'm trying to sort this idea of : what exactly am I living with? A few months ago, I found the website by Dr. Neff, "Neurodivergent Insights". The "Misdiagnosis Mondays" section has Venn diagrams and includes acknowledgment that valid multiple diagnoses can exist, too. The "clinician's corner" portion, which is in each comparison, also noted that for people who are both autistic and bipolar, awareness helps in finding more effective care options to balance needs. I have been checking articles in neuroscience news, and connections made between the list of overlapping traits for years, since my older brother self-diagnosed as on-the-spectrum and was given a mental health diagnosis by a professional. * In no way am I aiming to perpetuate stigma about mental health diagnoses, * nor do I feel this video, or yourself did, and am hoping the concept of "neurodiversity" is all-inclusive, and that experiences of emotional dysregulation, whatever the cause, can be empathized among people with support for care strategies, formal diagnosis or not.
Misdiagnosed Bipolar 2 as well here. I tried getting off my meds but over the years it has thrown off my natural chemistry and not in the cards anymore. At least we know the full story of what is going on in our heads. Thank you for sharing 🌈🦄🥔
The suicidal rate for autistic people with no learning disabilities sounds right. I was about 34 years old when I had strong tendencies to commit suicide and I would have done it if I had the right tools at that moment. I really wanted to do it to get rid of the emotional pain which developed by living in a neurotypical society of people that do not think like I do. I don't fit into societies conventions but I am not anti-social. I absolutely agree that an adult diagnosis is very important. Neurotypicals just see things from the surface. They don't understand unless they live our lives. I am 47 years old and I still live with my parents. I am now also receiving disability benefits because of depression that I have not been able to overcome for over a decade.
Hi. Thank you for your comment. Undiagnosed autism runs in my family and so does inter generational households. My 74 year old mother lives with us and my close cousin lives with her parents and now her son, daughter in law, and new baby also live with them. We all have different support needs and have to do what we need to even though it is not conventional.
I was diagnosed at 42, following my son’s diagnosis. Some might say that I beat the odds on life expectancy - the truth is that in my mid-twenties there were two occasions where I very nearly didn’t. A diagnosis can be life changing and life saving❤
@@WoodshedTheory I heard something on another blog that really stuck with me. It was about late diagnosis too - it went something like ‘it’s good to finally know you’re a Zebra and not a broken horse’. Thank you for your kind words and great content 🦓
I'm a 49 year old mom of three. I was diagnosed a few months ago with ASD level 2. My whole life now makes sense and I don't dread waking up in the morning anymore. I went for testing at my states disability office. It was a few weeks until my online testing and then i got diagnosed few days later. It was free.
I did a Google search for my states Department of Disabilities and Special Needs office autism evaluation. They have a number and a link for the forms. I filled them out and after they saw I needed an evaluation I was scheduled.
@erikavaleries I'm not sure what state you live in but I live in South Carolina. My web site is ddsn.sc.gov. Every state should have a disability office. Scroll down to autism services.
I was seeing a therapist for depression, anxiety, social anxiety, avoidant personality traits and other things. I'd mentioned suspicion that I might be on the spectrum and she recommended an assessment as knowing if I was actually autistic would inform my treatment for the various symptoms I presented.
I didn't start doing a deep dive until what it meant to be an autistic adult (including things like following this channel) until after I got the diagnosis. It gave me "permission", in a way, to dig into what it was and what it meant to me.
Very interesting to hear your story, as mine seems so similiar. I am waiting right now for the last appointment of 4 to get an ADHD diagnosis and I will have a ASD ADHD combined diagnosis towards the end of the year. In the meantime exploring and learning so much about myself - and grieving about lost time that had at least be very different. If only I had known earlier.
I just want to say how much I appreciate you and your channel. I just got diagnosed with having autism 2 weeks ago and I just turned 30. I was at a loss of where to turn to and your channel has offered comfort and support. Keep on being awesome and know your work is helping people and making a difference!
Great video! I think my ASD diagnosis at age 53 may well have saved my life. The most difficult episodes of my life previously often caused me to simply want to erase my existence. Now, I have an understanding of why I sometimes reach such a state, and know that once the offending stimuli are removed, I (eventually) return to an acceptable state of mind.
I was told in SF, CA of all places, that I had to completely quit cannabis in order to get the full assessment. I have to add… I’m about to be 40, I have been using cannabis for anxiety and especially use it for the weeks before my menstrual cycle, to help with the symptoms of that. My doctors have all been on board with cannabis being a part of my healing plan. The Kaiser assessment team refused to help me AT ALL, unless I quit for a month. They didn’t offer me any other type of help. Just… quit completely or be on your own. I left Kaiser and instead have been doing all my own research and deciding to help myself.
Ahh I have heard this about ADHD assessment as well. You need to test clean to get the final assessment. I understand that cannbis use can cause lethargy and other adhd symptoms but yeah I don't think you should have to quit for a month if they don't have any ideas on how to help you
A friend of my sister's said I show signs of it. I had never though about it myself. I was never a very social person, and considered myself introverted. I wish she would not have said anything to me about it. I now feel different about myself and kind of lost.
Those are only two traits that might be autism. But you do need more then two traits and there is also the question did you show traits in early childhood. The only way to get back on track and not feel lost anymore in my opinion is to either research it yourself or to go talk with a professional that’s specialized in autism and possibly get assessed.
Hi Micheal - thanks for sharing - I know that feeling, I had no earthly clue that it was autism that i was experiencing. I hope you feel a little less lost as time goes on
Thank you for your clear and informative posting. I am now in the middle of the process to be diagnosed for ASD and ADHD. I did not succeed to get the public healthcare to refer me to a specialist. They did not know much about autism and ignored me because I was too old (64) and not ”severely affected” ( the GP and the psychiatrist she consulted without him seeing me came to this conclusion on the basis of a 30 minutes interview which was done by a GP that did not know anything about autism). It was very frustrating and depressing. But my son, diagnosed with ASD and ADHD as a young adult, who had encouraged me to get a diagnosis, said thar I should go to the private side because ”I was such a clear case”. I did. Now I have went through a preliminary interview and three separate sessions with tests, which came out with high scores for ASD and ADHD. Next I shall have a four-hour session with a neuropsychologist. It has been a rough ride with my mind turned upside down by talking about things I have tried to hide all my life, but I feel I need it - to know why I have felt to be like an alien, so different, so misunderstood, so anxious and depressed, with eating disorders and panic attacks and all kind of mental issues and troubles that I have blamed myself of.
I'm glad you are doing it for yourself. I'm 7t, and I think for me a diagnosis may be the difference between feeling like a failure and feeling like I'm a big success to get where I am in spite of autism. I had both a mother and a long-time husband who seemed to enjoy pointing out everything I did "wrong."
I feel an official diagnosis is helpful to have medical documents from a professional to fall back on and have medical proof that you have legitimate struggles and needs. Great video Claire
As a person who has struggled with this myself before I say anything else. If you are currently struggling mentally and are thinking of un-aliving yourself please call a hotline in your country first or seek help reach out to a friend or family member. You are worth it and you deserve to live just as much as anyone else. Claire and I agree on this one stopping people from becoming a statistic is for priority number one. Making sure that waiting lists disappear in mental healthcare is important. People need to be able to get help before they go into crisis. For those wondering, if you survive the first two life expectancies if your around my age (49) the next statistic is 54. I only have one thing to add and that’s co-morbidities. You might go in for chronic fatigue for instance but it might be autistic burn-out. Some of the co-morbidities might be a result of ASD or the trauma from ASD(Autism Spectrum Disorder). I think it was a short by our friend Taylor, of the mom on the spectrum channel here on RU-vid, where she explained that if a person had an ED they should probably asses the person for ASD as well. Some of the research is also being done by autists which is even better in my opinion.
I think that all kids should be screened for autism in childhood, in a similar way to all kids getting screened for scoliosis. Most won't have it, but the ones that do might be less likely to slip through the cracks, and less likely to go through decades of life without needed support. I don't know if such a screening test ever will be implemented where I live (Canada) but I'd love to see it. All my kids are diagnosed and I feel like the way is paved for my future grandkids never to have to live very long undiagnosed. But there might be a lot of kids out there who don't have their way paved at all. Of course, I'm saying all this because where I live, the government pays for anyone under 18 to get assessed for autism, but if you're 19, it costs thousands of dollars. That needs to change, too. But the sooner autism is picked up on, the better, right?
I believe my adult autism diagnosis has helped a ton. In that diagnosis came a level of validation that makes me feel like much less of an outsider. There are actually people out there who share very similar experiences to me and that's very comforting. Knowing how my brain is actually wired has been a significant factor in managing my anxiety, depression, and anger. The world is far less frightening now. The diagnosis has given me a roadmap to self improvement and has allowed me to stop being so hard myself (well, mostly, anyway). It's helped me stop placing such high expectations on myself and all the people around me. I can't say it enough: It's channels like this that led to my adult diagnosis and that continue to have such a positive impact on my life. As always, thanks, Claire for all the sharing and insights you provide here. I find these videos have been every bit as important and helpful as the diagnosis has been in my journey.
My son was diagnosed first. He presents very "classic" traits. When I started suspecting I was autistic, I started seeing a psychologist. It took 5 hour long sessions, interviewing me, my mom, and filling out some questionaires. The process was very different from my son's! Emotionally, it has helped me feel validated and self compassion. As for assistance, I've received virtually none. I've applied for disability and been denied twice. I'm just too "high functioning" was the vibe I got from them. It has allowed me to get my medical card, which has been helpful. The other big thing that it has helped me find is this community! Great video, Claire! ❤
I'm happy for u. As for myself I'm trying to give myself the self compassion without having the diagnosis since it's inaccessible atm but validation that's tough. I actually emailed the lady who does the podcast: meet my autistic brain. I love her podcast. And she emailed me back such a lovely message and it was validating feeling. Also feeling accepted by the community here is so nice. I feel that I'm one of you. I hope u guys think of me that way too. It's not often I feel I belong.
I'm also slightly concerned that one or both of my kids could b neurodivergent. I don't know, should I try to get it checked on right away, they seem to b doing ok, but then again I think that's what everybody thought about me
Hi Claire, this is one of your best videos. I have tears in my eyes. A formal diagnosis is actually free here, but it's very hard to access it. Because formal recognition allows to have access to a better job, protection in the job environment, pension, and mental and social support. Unfortunately, in the past, a lot of people who didn't have any rights took advantage of this system. That's why nowadays government tries to deny formal diagnosis. I've been struggling for years and I'm exhausted. Fighting for a right, alone, in a neurotypical world, it's like going to war. Sorry for my poor English today, I'm very emotional right now.
Hi Claire! :) Such a great topic and awesome video! In terms of "needing" a diagnosis or not, I think the biggest thing to all those suddenly discovering they "might be autistic", and getting the reaction "it can't be that because you have done so well or gotten by in life under XX age." The things is many of us that are late diagnosed have made our lives fit us (as much as possible) and therefore it "looks" like we are doing just fine, but the "not knowing" creates so many tough situations and stressers in life. I am late diagnosed at 38 years old a little over a year ago. For me, life crashed when the covid lockdown hit in 2020. The life I had built, that functioned ok came crumbling down. I went from having 3 kids in school and one in preschool to 4 kids at home, with online schooling, no friends could visit (because if we did, we would exceede number of people "allowed" to be gathered at once) and so on. I went from functioning to crash which lead to burnout and later an assesement and diagnosis. A lot of people that get an autism diagnosis late, have possibly had diagnosises like anxiety or depression, but nothing "fits". I am now soon "back to my old self" in terms of life, but still suffering from the effects of burnout. The reflection that comes after a diagnosis and the accomidations that are possible when you know what you struggle with and even what helps is night and day difference to thinking " i might be autistic" vs . having a diagnosis. Usually only those who struggle in life due to autistim , even think they "need" a formal diagnosis. And for women especially, I think this usually happens post burnout when "life" seemingly catches up to what we can handle. My hope is that everyone who wants a diagnosis assessment is able to get one at low to no cost in a timely manner. So important for overall health. The more you know, the more you know. Kind of thing. :) Wishing everyone a great day. Hugs from Norway. 😘😘
It's especially important for those of us that have already had many stigmatized diagnoses on our records. I'm stuck doing as many evaluations as it takes to get the result, as there isn't really any other options that explain my life experience. For somebody that doesn't have good records or non-autistic people in our lives to ask for help, that may take quite a few attempts. Hopefully my next therapist will be more aware of the autism and I can get some help that actually helps rather than blame me for it not working. That being said, there will never be treatments and resources made available if there aren't people getting diagnosed.
This is also one of the difficulties of getting a diagnosis. Finding a professional that has enough knowledge of autism to either give you a referral for an assessment or do the assessment themselves. I had to search for someone with the proper knowledge just like you. All I can say is hang in there.
Autism diagnosis is not something that I can afford right now. My insurance does not cover it and I did look into it and it would be over $3000 for a diagnosis. My youngest son was diagnosed as part of his IEP process and by his psychiatrist with ASD when he was a Freshman and going though a mental health crisis. The life expectancy statistics really hit home for me because only last year he easily could have been a statistic. My other son is 23 and was never diagnosed even though he is a textbook case of ASD. He is diagnosed with ADHD and they just stopped there. Back in the aughts even if you were a boy it was not easy to get a diagnosis. Insurance at the time didn’t cover seeing someone else once he had an ADHD diagnosis. My mother is turning 74 this year and doesn’t want a diagnosis. I am POSITIVE that she as ASD. Diagnosis is very, very complicated. Hopefully someday it will be more accessible to people, especially in the US where mental health care is illusive.
I feel this. My daughter was just formally diagnosed and I suspect myself also to be on the spectrum. ADHD was diagnosed for my oldest, then my daughter, then my youngest and myself. I seen things that my daughter did, that I do, and I thought was different than others. Her doctor said, see about ASD diagnosis. So we did, the more I learn the more I see. I appreciate this video. Also, the life expectancy bc these feelings have been felt by her and I have had them, being vulnerable here, too. So, it is SO important!! Also, adhd was easier to diagnose than ASD in our cases too. I suspect my oldest to be and maybe even youngest. 💓🫂
@@Catlily5 I know. I checked into it and our insurance doesn't cover adult diagnosis and anywhere in the area or even online diagnosis ends up being around $3,000. It's pretty crazy.
I am 53M and I completely agree with you. I had a big long winded comment that after reading it, also reminded me that as an Autistic person, I didn't need to write a book basically saying what you just said. I was diagnosed early this year. When I first suspected and self diagnosed, I said that I am the same guy as I was before. That statement was correct in theory. While I am still the same guy, if you were to ask me now what changed with my diagnosis, I would simply say "everything". Everything has changed as I replayed my life and how I deal with life now. Everything changed for me in a positive manner in that it all makes sense now. I'll just leave it with that.
lol my x-wife always said at our counselling sessions that "there's something wrong with him". 11 years after our divorce, turns out she wasn't as crazy as I first thought. In later relationships being called passive aggressive, largely hypocritical and 'paradoxical'... : While there may not have specifically been 'something wrong with me', turns out my brain just thinks and understands/interprets things differently.
53, diagnosed in July. Suspected ADHD for more than a decade, accommodating that helped a lot, but no clue on the Autism piece until January when things fell apart at work. I was a VERY good masker. Having a actual diagnosis is essential for me because of imposter syndrome. Knowing my cognitive profile has also been very helpful. But the very day I got my diagnosis I also got accommodations from my university as I'm working on a Master's degree in special education because it turns out I like working with... You guessed it... autistic people... And it's been so freaking difficult! The accommodations weren't a lot, but they have made a huge difference to me. I opened up my report again just now and almost started to cry. Right now, this "diagnosis" being official is everything to me. Love you Claire!
Unofficial/self realized here. I've had 3 mental health professionals say I'm "most likely" autistic but since they didn't have the fancy piece of paper, I couldn't get my fancy piece of paper 😅 After months of research and scrutiny, I confidently know I am autistic. I will say tho, if I hadn't already had accommodations for work, I would indeed go through the process to make it official
I’m 69 years old and I have recently realized, and have had it pointed out to me by autistic friends that I exhibit many of the attributes of autism. I’ve taken many online tests, and they all say that I am a high functioning autistic woman. I would like to be diagnosed so that the medical providers would take that into consideration when working with me. also, that it would encourage them to learn more about adult diagnosis for women in particular. It sure creates a lot of “lightbulb moments.” I also wish that I had access to fidget toys or stim toys when I was young. It would’ve saved me from going through periods of self mutilation. Claire, everything you said was spot on. I am so glad I found your channel and I am a Nader and spinner and crocheter and Weaver too!
I'm a 34 year old woman from Ontario, Canada--my formal assessment through CAMH (healthcare funded) will be at the beginning of November, and I waitlisted for over 2.5 years to get to this appointment, after already waiting 6 months to be pre-assessed/"diagnosed" by a local psychiatrist! In the time waiting I was only able to find 3 local psychologists who would do private assessments in my area, the lowest estimate for cost being $1,500--they then proceeded to tell me that even with the diagnosis through them, there'd be nothing they could personally offer me as they aren't qualified enough to deal with adults on the spectrum, only kids. 🙄 It's incredibly disheartening how long you have to wait for covered avenues...albeit, I suppose it does help whittle out of the process those who determine they may not need the additional supports/official validation at this time afterall--but given what you'd mentioned in your video about statistics surrounding suicide and ages within the Autistic community, I think that alone should emphasize the importance of getting quicker/earlier diagnosis and better accommodation in place for the current and future generations. Your video could not have come at a better time--very reassuring. Thank you for giving me some extra oomph to push forward more confidently in my own journey!
A lot of the community is accepting of self diagnosis. There’s a lot that don’t though, especially from the different autism subreddits. There’s always those gatekeepers
That was me my whole life... masking, trying to fit in, copying others.... all of it. I still catch myself copying others as I still don't know who "the real me" totally is yet but I'm trying to learn. Autism was the answer that made sense to all the years of feeling different. I want so badly to get a formal diagnosis but I cannot afford it at this time and maybe not for a very long time. For right now my self diagnosis and following my journey of who I am, has helped tremendously. I have so much peace that I never had before. And I'm much kinder to myself. I used to be so hard on myself because I couldn't do what others do so easily. Now my whole outlook has changed. Thank you for this insight. So very helpful.
I'm 42, found out in January this year (2023) that I'm AuDHD, and I think I only got so far because I learned early in life how to be optimistic (in a realistic way, not self-delusional toxic positivity) and also recognizing negative thought spirals (and escaping them early). I also had a lot of luck and was able to do work that aligned somewhat with who I am. Since then it's been an incredibly rough time. I'm also in autistic burnout (the reason why I ever found out). So I'm trying to learn how to get out of that while also trying to learn who I even am. I'm doing my best to be my own therapist. Watching so many videos of so many wonderful autistic people like you. I am only diagnosed with ADHD, which was hard enough. It seems that there's nothing _I_ would get access to if I got officially diagnosed. It might even have downsides in regards of health insurance. Videos like yours are giving me the actual tools to improve my life. THAnK YOU FROM THE BOTTOM OF MY HEART!!!
“You’re too much.” And “You’re too serious all the time.” (When I would talk intensely about a special interest or belief.) I believed those lies about me most of my life and I’m terrified of hearing it again if a “professional” misdiagnoses me.
So true Claire! I question sometimes how well I'm really integrating my diagnosis, having gotten it Sooo late. Even after Millions of hour of autismtube, lol. Everybody secretly thinks of themselves as totally normal, but Unique. But in Reality, nobody is quiet normal, and nobody is terribly unique. I said it like this 'coming out" with the diagnosis to my dad. Even if you are very very Unique, there are still at least a couple of percentages of the population just like you. But when you seem to be only autistic person in a small town it's hard to keep that in mind.
About the risk level of suicide: Young people committing suicide pull the AVERAGE life expectancy way down. I see several things that may play into this: 1. Young people who are diagnosed with autism move into a phase of life where they are old enough to live on their own but don't have the ability or skills to do so. 2. Young people with autism, diagnosed or not, who have a lot of problems forming friendships and/or love relationships. Breakups can really bring us down. They are especially likely to happen to those who lack self-confidence and self-esteem and, at the same time, are hardest to deal with when we lack self-confidence or self-esteem. 3. Young adults who are high functioning in many areas but continually fail in one or more areas, and this feel like they are not living up to their own expectations or those of others. 4. Autistic people are more likely to be gay or transgender (than the general population) and face all the problems that come with that, especially abandonment or rejection by family.
This was a really good video! I'm making a decision right now about whether to go ahead with an assessment. It will cost $2500, and there are a lot of things I could spend that money on. However, I'm pretty sure I'm going to do it. I am 75. I don't think even boys were assessed as autistic when I was a child. I do know autistic people can get better at things, although it may always be harder for them than for the NT. It's like dyslexia, which is also a neuro-divergency. It's hard for a dyslexic person to learn to read, but practice will make them better at it. I think I am probably Level 1 autistic and I'm also moderately introverted. But I'm pretty comfortable in most social situations now, due to lots of practice. If everybody (including myself) had known I was autistic and not expected it of me, I might never have learned to be comfortable in social situations. It's still difficult for me to take the responsibility to plan a party or event. I had a job that included planning an annual big event -- a big career fair for high school students, and I hated it more every time I did it! After I had to fight my way across the floor of the convention center to make a fresh pot of coffee, I said never again! I used the reason that, if someone had a medical emergency in the middle of the room, they might never make it out alive.
Great video! I am a very late in life Autistic diagnosed person. I struggled so much when I was younger and always felt different. I developed coping skills that did help me eventually but I still felt different. Knowing now that I’m Autistic has really been an eye opener, It now makes sense all the things I struggled through and to see myself as I am and give myself more grace. I am blessed to have a wonderful neurotypical husband who loves me just the way I am.
Hiii! I just wanted to say that those stats about life expectancy, which are very unfortunate, are likely more related to level 3 or 2 autism than level 1, I think. I would take them more as indicators of why people with level 2 and 3 autism require support. I'm not so worried about it myself. I'm pretty much certain that my dad is just as autistic as I am, and he's over 70. I also see a solid number of older people in these online communities and discussions. I think it's also important to note that, since society is generally adjusting to just how many level 1 autistic people there are, that if there are further studies in the future that take the entire autistic community into consideration, or even just each individual level including level 1, then we'll probably have some more specific information so we can discern where we stand in relation to the statistic a bit more clearly. This actually might be my future career, btw. I've noticed so much that still needs to get done in the field of psychology and I have so much personal experience figuring things out, plus I really think autism is incredibly ideal for discovery and teaching because I (or we?) need to understand the core ideas that our structures are built on, so my mind is always testing things to see what's what. So anyways, I looked at a linked article to one of the sources I found, and it says 6.4% of people with autism in the study died at age 39. I'm not entirely sure how to determine if that is a major focal point, but it might be fairly spread out. There are also other things to consider, like how autistic people are highly likely to have comorbidities, thus their mortality may be affected by something like epilepsy. What I do think is incredibly important to consider is how earlier development can affect mortality. There are a good few studies (not specifically on autism) indicating that hardships in youth can substantially impact mortality later in life; Continuous socialization as an adult also directly impacts health, which, of course, may be an issue for autistic people. Thank you for bringing up the stats / study. I totally did not know about it until now. P.S. You can probably tell I'm in college mode. 😎
I just joined Healthy Minds Club at my college. I'm def using it as an opportunity to spread awareness about autism, since so much of my life was impacted by not knowing, and there are more people like me than I realized. I'm pretty sure at least one person in that club is an undiagnosed autistic person. 👍
@@WoodshedTheory Oh, actually the study I read didn't mention suicide. Here it is: www.ncbi.nlm.nih.gov/pmc/articles/PMC6713622/ I did read other studies that suggest that autistic people are more likely to die from all causes compared to the general population, so taking care of our health is super important. Also, multiple studies suggested that specifically people who are autistic with no notable intellectual disabilities are much more likely to have suicidal tendencies. It's pretty dark to admit, but I can honestly relate to having been there, and I've seen a few videos of other autistic people mentioning that they didn't necessarily want to kill themselves, but they just wanted what they were dealing with to end and couldn't see any other option. I do still think what I said in my initial post is accurate, particularly focusing on how people who experience greater hardships have their health be more heavily impacted; While I haven't looked up a specific study to indicate how the stats differentiate between different levels of autism, I've learned from other studies and textbooks that mental health and physical health are more intertwined than most people think, and it's logical to me to assume that this would have an amplified effect on at least hypersensitive people. molecularautism.biomedcentral.com/articles/10.1186/s13229-023-00544-7 (this one's a bit dense) I totally forgot to mention how autistic people have an increased chance to experience trauma. But, idk, we can't let ourselves be overrun with worry... I mean, it might be bad for us! 😅 Last note: The rate of autism diagnosis has increased from 1 in 44 in 2018 to 1 in 36, which is almost 3% of the population, which is higher than predicted in these fairly detailed studies I'm linking up. That's a pretty major increase. I wouldn't be surprised if it gets closer to 10% by the time it starts evening out. Just a guestimate. I took these comments way too seriously. 😆
Ok, I HAVE to follow this up. The 1 in 36 to 1 in 44 occurred from 2018-2020. And it's only children. These statistics literally completely ignore late diagnosed autistic adults (maybe even teens), which is very clearly a massive phenomenon, if the prevalence of these online communities over the past few years indicates anything. I don't think it's healthy for the public to view it as a childhood disorder; I think that's literally because children are the worst at masking and clearly need the most support. Times are changin'.
Thank you for this powerful video, Claire. I had no idea about the low life expectancy. That is impactful. I’ve been waitlisted for a long time to be evaluated. It was much easier to get tested for ADHD, and that helped me to understand alot of issues. I have Hypermobile EDS as well and had chronic illness symptoms from my teens. Accepting those issues helped me be ok with my differences, too. Still, getting an accurate diagnosis is the best approach
I'm in Canada... free healthcare here, but mental health isn't free. My nurse practitioner & the student that was with her said "you're likely autistic, but...". I was told that only kids can get a diagnosis. I'd have to pay thousands of dollars to get one. I don't have any sort of insurance because I don't have a full time job. 😅 After that, my tooth cracked and I needed to pay $500 to get it filled (dental isn't free either). On top of the rising cost of everything (except wages aren't going up)... and I needed to buy a car last spring (used... but had to do financing and nearly empty my savings for it)... I just can't afford it. 😭 It doesn't help that in a kind community I'm in, when I said I think I might be autistic... 3/4 of the responses were "dr. google", "self-diagnosis is not valid, you can't say you are autistic without a formal diagnosis"... and stuff like that. I just watched a little video from the BBC before this that explained stuff (looking for stuff to send my mom) and some of the top comments on it (other than people relating to it) were "self-diagnosis is not valid"... I hear on channels like yours (Taylor's, Orion's, etc) that self-diagnosis is valid, but it seems many others say it isn't, which makes me feel like I can't include myself and imposture syndrome is high. It's been 6 months since I got a light bulb moment when youtube decided to randomly recommend one of Taylor's videos... then I went down a rabbit hole... but I still find myself doubting. "What if I'm wrong? I'm always wrong? Maybe I'm just weird. Maybe I really am just an overly emotional weirdo who manipulative and picky. I don't relate to all the traits on these lists people give... just like half of them... maybe I'm wrong..."
i'm sorry about the dr. google comments. that is what i feared as well and fortunately at the time I could pay out of pocket for an diagnosis but it isnt possible for everyone. i also get the imposter syndrome thing - i struggle with it even with a formal diagnosis
@@WoodshedTheory It sounds like imposter syndrome is pretty normal for most, diagnosis or not. It just upset me that people weren't at all supportive and were all doubtful.
It was important for me to find out to know how to help myself better. CBT just pisses me off when I try it so I knew I needed to find out more about myself and learn how to cope properly. Unfortunately, there is no directory for clinicians qith autism. Luckily, we have places like this where we can learn and share.
I wonder if the low life expectancy is more to do with the poor mental health of autistic people rather than the autism specifically. I wonder if we received better mental health care and support whether that average would greatly increase?
I received a lot of mental health care and it did help me. Unfortunately I was still suicidal because I was not diagnosed correctly. I just got diagnosed with autism this year. Mental health helps more with the correct diagnosis.
It's a miracle I've lived to 33 (and only been institutionalized once). I need accommodations. It seems like businesses don't provide adequate accommodations.
I'm 63, and I feel at this point that my own understanding that I am indeed autistic has already had a profound impact on my life and made so many things that caused me so much pain and confusion throughout my entire life far easier to accept and understand. I would love to find a way to get a formal diagnosis, but at this point I can't imagine going through the waiting, the hurdles, and the monetary hardship for someone to put their professional stamp on what I already know. I don't know what accommodations could be made for me, anyway. As far as somehow being more credible to neurotypicals, on some level I feel like why start now? It may have to be enough that I know very well what I am. It has helped me a great deal to realize ways I was masking, to stop imitating behaviors to try to fit in and come from a place of learning to feel what I'm feeling and let my behavior happen v accordingly. I certainly don't feel as if an official diagnosis is going to make anybody who doesn't accept me now accept me any better. I would like to do it for my own edification, but I feel as if right now, I may have to accept that it's out of reach, and perhaps be pleasantly surprised if that changes.
Thanks!!! ❤❤❤ What a shock is finding out this life expectancy!!! Life has been so brutal until now, I’m 46!!! That diagnosis which I were looking without knowing as crazy as it may seems!!! My son already have his diagnosis but I had to learn it the hard way going through many crises phases and dealing with many mental health issues obviously related to autism… My new GP seems to corroborate this and it is such a relief understanding why I am the way I am!!! I’m actually crying but it is because you’ve exposed, by sharing this video, what I was hoping to hear out loud that would validate my deeper thoughts!!! Thank you again for sharing!!! I’ll share it later to help explaining what it is like to be autistic!!!
Thanks for sharing. I’m 49 and so far self-diagnosed with a lot of “aha” moments. Just had my first appointment for formal diagnosis and awaiting the next one in 9 days.
Good topic! I am currently going by self-diagnosis because I'm convinced by all the evidence of how Autism look compared to how I've been living my life. I also have EDS which is apparently frequently linked to Autism. And of course, the barriers to diagnosis are just so great. I don't have a therapist and never have had one. I don't know how to choose someone who can handle not just Autism diagnosis, but also childhood trauma, chronic pain, and who knows what else I have buried in my psyche. I have a lot going on with my physical health and cannot imagine the undertaking of trial and error choosing a therapist, not to mention the cost. It would be great if I could get an Autism diagnosis easily, like during my family doctor yearly check-up appointment or a flu shot, but there's a lot of time, cost, and effort involved in this project and I'm just so tired right now and overwhelmed. The discovery that I've been Autistic as well as the realization that I've had childhood trauma both came very recently and I'm also dealing with family fallout as well. I'm trying to cut ties with some of the abusers in my family but it's never as easy as it sounds. I'd be interested in any tips you might have for further navigating the psychiatric challenges of finding appropriate mental care, because I'm so lost. Thanks for discussing this! Hope you're doing well.
Hi Benia - thanks for sharing your experience, I can think about some other tips on navigating psychiatric challenges - that is a tough topic cause everyones experience is so different.
From my experience, if a diagnosis just serves the purpose of general labelling people, then I think they're not overly useful. But let me explain first, I've got diagnosed with ADHD now 11 years ago, while the diagnosis was helpful for me to understand I'm different but not stupid and lazy, it wasn't helpful at all when dealing with medical professionals. Because when you're tested for ADHD the tests are literally only asking the superficial behavioral patterns and attention that are required for the diagnosis coupled with intelligence, math and language tests to rule out other causes for the underlying symptoms. What's not done at all is testing the individuals for certain cognitive impairments (working memory, motoric functions or the ability to do complex multilayered tasks and other executive functions) This leads to patients passing through test batteries alright (around or slightly below average in some areas, even above average in some areas) but horribly fail at trying to work like I did by forgetting work instructions, my tools, general shutdowns where you just stand while trying to do something and stare into space because your mind is being overloaded by unclear and ambigous instructions or accidentially insulting people because you said inadequate things but couldn't check due to the speed of every day conversations you heavily regret afterwards. And this is only specific to my country: If you're diagnosed with ASD until a few years before you were automatically deemed unable to work and forced into disability event at a decent level of functioning, which basically meant you didn't ever get the chance to get and hold a decently paid job. Instead it was likely to get shoved into rehab facilities where you'd not even earn minimum wage for the rest of your life. Because ASD and ADHD are now both viewed as spectrums (not everybody has all symptoms and functions to a varying degree) I don't think generalized labels are overly helpful, I'd do diagnoses instead and if struggles arise expand them with the struggles of the individual. Enforcing premade clinical stereotypes on people just because they got a certain diagnosis just feels wrong to me if it doesn't catch the individual and different aspects for each single person.
I'm 49, so I'm glad I passed the 35 threshold. LOL! My grandmother was most likely autistic given what I knew about her, she died last year at the age of 93. I'm getting my diagnosis this week (out of pocket). I chose to do it for the reasons you mentioned, imposter syndrome, because of imposter syndrome I have had suicidal thoughts. I'm hoping the diagnosis will help to put all my doubts to rest. LMAO! that we grow out of autism. I know personally that I had to learn adapt (sort of) to live in this world. I know I have grown out of many social issues I had in my childhood and teens BUT the sensory sensitivity has gotten worse since my 30s which could be due to perimenopause. YAY! ugh.
I was diagnosed with a lot of mental illnesses. I tried to die 4 times all before age 40. The mental health system helped me some but I felt stuck and like I wasn't making progress. I was feeling suicidal again for the last couple of years but I didn't want to act on it and hurt my friends and family. Getting the autism diagnosis this year at age 47 helped me feel less suicidal. It was hard to make progress on mental health issues when I didn't know that I had autism. So I have quit being as hard on myself as I used to be. I was lucky to get diagnosed for $500 because I got a Stimulus check from the State Government where I live. Otherwise I would still be undiagnosed. And for me self diagnosis wasn't enough. I always doubt myself. I would doubt myself even with a formal diagnosis if I wasn't diagnosed with POTS. POTS, EDS and autism often go together. The doctor has said that I probably have EDS. So when I start to doubt the autism I remember the physical problems.
Lily thank you for sharing your experience with us. I know it must be difficult but it will really help a lot of people who have been through this as well
Excellent video Claire. I'm waiting, with 143,000 others, in the UK for an assessment through our free NHS service. Considering whether I should push for one I have encountered the "real diagnosis" versus "self diagnosis" dichotomy in the community, which I disprove of. I do have periodic suicidal impulses. I don't get to the planning stage and the feeling passes so I used to think that was okay. Apparently that is in fact typical. Life is daily hard but still well worth living for me. A few years ago had you asked me about autism I would have imagined a child with a puzzle and an observer making notes. Although I may have been correct on both counts with this (I'm joking about the observer) I would never have thought it applied to me. I used to say to myself just what is it with you?, what is your problem? (yes third person). I was looking for an answer. I need the answer, I owe it to myself and to the person(s) I was back then.
I'm wondering why it appears to be simple to get an ADHD assessment. Lately, I've been bombarded with advertisements for on-line ADHD assessments that are valid in all 50 states in the US. The assessments are 100% on line and based on what I have read, they don't take a very long time to complete. My cynical side is telling me that the reason has to do with prescriptions. There are drugs you can take for ADHD, but none that are just for ASD.
Wilderwood out of New Mexico specializes in adult women's diagnosis (online even) for a fraction of the price of other places. They were very compassionate and easy to work with. Being 44 and diagnosed a couple of months ago, I couldn't help but break down when i was diagnosed. Not because of anything bad, but because suddenly my life actually made sense. I didn't get diagnosed for support needs, but for self validation and understanding. It was worth every penny.
I already feel much better after I learned about autism by accident on youtube. Im not sure If I should ask my doctor what he thinks about it. Im already physically disabled since birth. But I always had the feeling that there is still something different with me ... On one side Im pretty sure I am autistic but on the other hand I don´t know If Im believed by my doctors.
I received my full diagnostics report last night. In Ohio, 2023, you're looking at $4,000 out of pocket. In defense of the Dr, he and his team are top notch!
@WoodshedTheory so much weight has lifted. I am very grateful for the privilege to do the process. My heart goes out to those who can't. I want to figure out a way to get involved with advocacy and hopefully help further the ND community.
I dont necessarily think diagnoses is essential but i do entirely disagree with 'self diagnosis'. You can tell the world you think you might be autistic. But to tell the world you ARE autistic without a diagnosis IMO causes harm to the community as much as poor diagnostics do. But i think if you content to move through the world sure in your own mind then all power to you.
Most people that self diagnose do a lot of research. Not a day or three TikTok’s but months and sometimes years of research. I have no problem accepting someone’s self diagnosis. University of Washington Autism Center has released a pamphlet for people that have no choice but to self diagnose. My favorite quote of that pamphlet reads: “In our experience at the University of Washington Autism Center, many professionals are not informed about the variety of ways that autism can appear, and often doubt an autistic person’s accurate self- diagnosis. In contrast, inaccurate self-diagnosis of autism appears to be uncommon. We believe that if you have carefully researched the topic and strongly resonate with the experience of the autistic community, you are probably autistic.” ASD isn’t a very glamorous diagnosis. There is a lot of stigma attached, people don’t self diagnose for fun.
What are some tips you all have for communicating to gatekeepers at assessment centers or licensed practitioners trying to, idk, determine who should be assessed. Not ways to trick the practitioners, but what verbiage speaks the truth in a way that help neurotypical providers “ get it”. I recently said “I want an assessment because I want a trained licensed practitioner to determine if autism is present-conveying respect for their work and just saying I think it’s important. Also, paying out of pocket. Screening through a state university consisted of several lengthy phone calls. Then told they didn’t offer that testing….which wasn’t true (learned from my referring practitioner who refers to that assessment center and was still getting people tested) Couple thousand to get assessed.
Hmmm I would maybe try to get to speak with a psychiatrist first - it’s probably easier to talk a GP into a psychiatrist and they would probably be better equipped to help you
My problem, at this rate, is it wouldn't service me. My father is diagnosed with autism as are two of my other siblings. And I have learned over the years that I have very little possibility of not being autistic. I am designated as seriously mentally ill by the state. At this point, I collect diagnosis like candy. another one really wouldn't do me very much good. At that rate, there is no adult treatment that I am not already going through for other issues. There are others I know who are in similar positions, and who a diagnosis simply wouldn't do anything for. This applies to a greater degree to people living in the United States. Healthcare is so arduous, expensive, stupid, and difficult. for many people the benefit does not outweigh the amount of time you have to put into it.
@@WoodshedTheory I just wrote this because you were saying that some people think that adults shouldn't be diagnosed because we have been successful enough this far. But not all of us are successful.
I have a question how come Autistic women find it easy making and keeping long time relationships and even get married. While most guy's on Autistic Spectrum struggle to make or keep relationship and are often spend most of their life single?😮
According to statistics somewhere 7% of us are married. It’s possible but a relationship is more work for us then it is for an allistic. Communication is incredibly important. Also to meet a life partner you kind of have to put yourself in situations that most of us don’t like. You have to put yourself out there. Whether that is via a dating app or just going out.
Hi mike - I think I understand what you mean however i'm not sure that women do have it easier - we are sometimes better at fully masking our traits so that may be why we might be in more relationships. but be assured it's still a struggle