15:40 I always think of that quote attributed to Einstein that everyone is a genius but if you judge a fish on it's ability to climb threes it spends it's whole life believing it is stupid.
Another awesome well documented video and you explain your experiences, and the professional side with such empathy and logic, i love your channel, so happy i found you on here !!!
The disability part of my ASD doesn't rule my life until I'm experiencing shutdown or depression. Until those times I've found tools to work around those daily barriers. After receiving my diagnosis at 39 y/o, I feel more confident in speaking up against the stigmas and intervening innaccurate and cruel judgments as teaching moments. I want my son to grow up in a better world than I did, and staying silent (as much as i love being silent) isn't going to aid in shaping a better world for him. I've made a conscious decision to make my voice, full of love and hope, louder than hate. Thankfully, there are many others who are doing the same thing now. The stigma is fading...slowly...but we can speed it up :)
I would have wanted to be diagnosed as a toddler, like my son. I had horrible experiences starting very young. I would have wanted my parents to know that I was different and did not have to exist in the ways that most of my peers did.
That's really valid. I flip between wishing I'd ALWAYS known (i.e. as a toddler), wishing I'd found out as a teen, and accepting it the way it happened for me later on. I'm sorry to hear your childhood was hard, I hope things feel easier now.
Looking back, like you, many traits were available to diagnose; yet now diagnosed (understanding the "cosmic microwaves" in the background) at 54 y/o, the capacity argument makes sense. It seems there are several other factors as well to receive a diagnosis, such as access, or understanding of what to expect during the assessment process. The latter really made the difference because instead of going into a therapist office with the mask of everything is okay, like we've done historically, I had to be very real and vulnerable to share my truths and natural behaviors. It was both humbling and freeing. Thank you for another great video!
Yes - you describe this really well. It almost requires a complete paradigm shift in the way you present yourself compared to doctors, therapists, etc. Humbling and freeing is a great description of the experience.
I believe it is an advantage for me to grow up not knowing... though some better teaching and accommodation would have been good...I am the youngest of three daughters and so was expected to know less and therefor accepted for my differences but now at 60 and diagnosed at 58 my Family don't believe my diagnoses , I'm not sure what is worse! Not knowing and being accepted or knowing but not being believed.😢 I love your" I'm a dog not a cat" analogy we are all animals. Tangents are good we nd's just come along with you." "Nothing about us without us" the arrogance of nt's is so irritating to me. I wish I could have more of a voice but I don’t have the confidence and I am not as articulate as you. Thankyou for speaking for us.
"Not knowing and being accepted or knowing but not being believed" - that's really stark and really sad, I'm really sorry that's been your experience. 😢
You've basically described my experience about formal diagnosis. I took it in Poland one month ago (side note: 1-2 years ago there wasn't a single specialist who was diagnosing adults in my almost 1million people city). I was 99% sure I'm autistic, after few last months when I was struggling much more than usual (and that wasn't a first time this happened). Sought for formal diagnosis just to make things official. Surprise. Apparently I got only 2 points in ADOS test (12 or 14 is the threshold I believe) and are for sure not Autistic according to the therapist. For that, she said I have quite a few ADHD traits and she recommends looking for ADHD diagnosis instead. That was complete shock to me. I went on TH-cam and after just one search found a bunch of people having both ADHD and Autism at the same time (I believe this is when I discovered this channel as well :)). I felt gas-lit as hell. Apparently in Poland they still don't know that. I'm natural contrarian, so I have no problem rejecting message I got from any authority :) Right now doing a lot of my own research and are still pretty confident I'm on the spectrum (and yes, with small ADHD mix to add to that). But I believe most people will just accept the diagnosis verdict, and big harm in their life just happened. Thank you for sharing your story, this also helped me a lot!
Thanks for sharing your experience also! That's really dispiriting to hear about lack of professional knowledge on co-occurring autism and ADHD and how having both alter the presentations of either. Well done to keep pushing and keep doing your own research, a lot of people do give up I think at the first 'professional' invalidation. We really do have to be our own primary advocates, I'm increasingly realising..
@@amineurodivergent Now I'm reading my previous message and maybe it sounds too harsh. I need to give kudos for all the changes that happened in this field in just a decade. It's too easy to just start complaining. Even the fact that I was able to learn so much via TH-cam is huge (and all that for the price of $0). Things are progressing :)
I'm not diagnosed, but I paid for an intial consultation with a clinician at a private practice that specialises in "neuroaffirmative" diagnosis of autistic adults. They said I experienced the world "in an autistic way" and that it would be appropriate for me to look for changes I can make to my environment that would help an autistic person. So I was wondering if it'd be valid to say I've been *identified*, if not diagnosed as such? I've had several periods of what I think were burnout in my life, and I've struggled to find employment, stay employed, make friends, have a support network, all that stuff. Right now, my existence is very simplified and I think that's helping me "cope" - basically, because I don't need to cope with very much! So I'm currently working and not in the process of getting sacked as far as I'm aware. I guess what I wanted to say was, it might be valuable for lots of people to be provisionally identified as autistic, even if they don't meet the official diagnostic criteria for autism spectrum "disorder": it would allow them to understand their lives through the neurodiversity lens and audit their live/ tweak their surroundings in autism-friendly ways that... if they help, then fantastic, and if they don't help... then no actual diagnostic label?
Thanks for this video. I'm not going to be able to do the fourth installment of the U. Kent course, so hearing your notes and comments is especially helpful. Regarding the concept of being "not really troubled" or "not really having functional difficulties" because of having autism -- stating the glaringly obvious: people who aren't really troubled don't try, or succeed at, suicide. I know that the understanding of and support for autism and autistic people has evolved a lot over the last four or five decades. I also know we have a long way to go, especially in the U.S. From what I've seen, Great Britain and Australia are light years ahead of us. I can't find a clinician who will do a formal assessment for which I don't have to pay with blood or my firstborn. I can't find support services. I can't find even a supportive *attitude* from clinicians I've contacted. So I'm taking a new tack, and working on pumping up my No Fucks Given attitude. Hey, I've survived 75 years without formal support for my non-neurotypical brain and life experiences. I can do this, too. BTW, I saw a new youtube channel in my feed, but haven't had a chance to listen to the first podcast. It's called The Autistic Culture Podcast. First episode is here: th-cam.com/video/W_vk3eiFhQs/w-d-xo.html
Exactly - I know the course was only flagging it as a question that's asked, but to me I think it's a bonkers perspective. Just because someone is temporarily in a conducive environment, it's only going to be ok until it's not ok, there should never be zero underlying understanding, empathy or support in place. And yet all too often that's the case. I think it's great that a) your attitude is so battle hardened and b) you're hacked off about the lack of support in your area. Rant not over, just paused is a phrase I might start using myself! Thank you for the link to the new podcast, I wasn't aware of that so will add it onto my watch list. All the best!
I think it takes a lot of courage research this for oneself as an adult, and to go further and make a video of it. A lot of people find vidoes very helpful not only for information, but for comparison and to feel less alone in the experience. I think it is very important have a proper identification of autism, otherwise a person can simply be seen as difficult or odd. Also not having the condition identified and thus possible access to the best support and understanding could perhaps lead to severe depression and other cross conditions.
10:34 this is my worst fear. I'm selfdiagnosed. I'm waiting for assessment. I've had 2 burnouts but I'm coping again now. Will I be diagnosed in a few months as my life right now is quite okay at the moment?
The only thing you can do is tell them about the multiple burnouts. Describe the cycle of coping and then not coping. Be honest about your struggles and try not to mask. And hope that they get it. Good luck!!
15:30 1.5 years ago I got recommended a yt vid from someone about autism who I normally watch for game related content. I immediately recognized some of the video and after some searching decided to ask my friends if they thought I could be autistic. They where very sure I am. But now I wonder why they never told me before. I have known them for 6-7 years. I am now on the waiting list to be assessed. In the meantime I am seeing a (non-autism specialized) therapist and after a couple of sessions they said they are very sure I have autism. If it turns out I am autistic I am not going to be happy at all that people decided not to tell me before.
Don't be too hard on friends, I would say - it could be that they SUSPECTED you may be on the spectrum but they're not trained to diagnose people so probably felt it wasn't their place to say something that could be way off base or that they'd get things wrong. Your friends just like you for being you, which is by far the best thing about being your friends. Teachers or healthcare workers, on the other hand, who suspect and don't tell people, they're the ones paid to look after people so that's what's get me annoyed. Be patient with your friends, though, they probably didn't know for sure, they just knew that they liked you whatever else may or may not be have been going on with you. Maybe some of them could be on the spectrum too? ND people tend to be drawn towards each other much of the time.
I (48M) went to my GP hoping to get a diagnosis but he just said anxiety and gave me pills and CBT. I have my first CBT session this coming week and I'm worried it'll make things worse.
That's a little dispiriting. Have you taken the AQ Test or CAT-Q test or any of the online self tests? If you have and a GP's not listening to that, you're entitled to complain or ask for a second opinion. Def mention to your anxiety/ CBT therapist as well. Good luck - if you're UK based, fire me off an email (amineurodivergent@gmail.com) as there's one or two people I could maybe recommend you have an exploratory chat with - the ones I'm thinking of do charge a small fee but they helped me negotiate some of this tricky terrain at the start..
I'm in Canada. I have taken the AQ test multiple times and scored over 40 each time. I'll definitely mention all this to my CBT therapist. I think part of my GP's reluctance is that he feels there's nothing he can do with an ASD diagnosis. There are no meds, no therapy, etc. The dx itself is valuable to me but not to him I guess.
@@jamesrempel8522 what a bizarre approach. You wouldn't tell someone missing a limb there's nothing that can be done about so we'll just not acknowledge it and just try to get by as best you can. You'd support the person and ask them what they need. Sigh. Thanks for sharing this, I'm increasingly seeing how common this is...
Caveat no kids and not going to have kids. Wouldn't it be best to have every child screened maybe as part of some primary school medical exam and then the parents can be given resources if its somewhat likely the child has ASC? I would think that I would have wanted my parents to know the whole time and maybe he given that information somewhere around the third stage of childhood development when I stated to develop my sense of independence. Thats typically around puberty and in the US thats typically around middle school so 12-13ish. Then folks who are autistic will have the understanding and not build negative self images because of their natural brain processes being different than the Majority of other kids? Like the parents know so they can avoid possible cptsd causing behavior just from allistic to autistic miscommunication and then when the child needs to start using those skills to solidfy their identity they are told "hey you actually use philips head and the majority use flat screwdrivers. Its not bad its just different, here are some ways to work around that difference"
15:40 I always think of that quote attributed to Einstein that everyone is a genius but if you judge a fish on it's ability to climb threes it spends it's whole life believing it is stupid.
Another awesome well documented video and you explain your experiences, and the professional side with such empathy and logic, i love your channel, so happy i found you on here !!!
Everything, everywhere, all at once, is maybe the best summary of Autism that I've ever heard. Well put!
Ha, thanks - I stole it from the movie title but it does 100% work for us!
The disability part of my ASD doesn't rule my life until I'm experiencing shutdown or depression. Until those times I've found tools to work around those daily barriers. After receiving my diagnosis at 39 y/o, I feel more confident in speaking up against the stigmas and intervening innaccurate and cruel judgments as teaching moments. I want my son to grow up in a better world than I did, and staying silent (as much as i love being silent) isn't going to aid in shaping a better world for him. I've made a conscious decision to make my voice, full of love and hope, louder than hate.
Thankfully, there are many others who are doing the same thing now. The stigma is fading...slowly...but we can speed it up :)
Beautiful post!
I would have wanted to be diagnosed as a toddler, like my son. I had horrible experiences starting very young. I would have wanted my parents to know that I was different and did not have to exist in the ways that most of my peers did.
That's really valid. I flip between wishing I'd ALWAYS known (i.e. as a toddler), wishing I'd found out as a teen, and accepting it the way it happened for me later on. I'm sorry to hear your childhood was hard, I hope things feel easier now.
My preferred term is identification (instead of diagnosis).
I think that is a better term. Diagnosis has certain overtones, Imo.
Looking back, like you, many traits were available to diagnose; yet now diagnosed (understanding the "cosmic microwaves" in the background) at 54 y/o, the capacity argument makes sense. It seems there are several other factors as well to receive a diagnosis, such as access, or understanding of what to expect during the assessment process. The latter really made the difference because instead of going into a therapist office with the mask of everything is okay, like we've done historically, I had to be very real and vulnerable to share my truths and natural behaviors. It was both humbling and freeing. Thank you for another great video!
Yes - you describe this really well. It almost requires a complete paradigm shift in the way you present yourself compared to doctors, therapists, etc. Humbling and freeing is a great description of the experience.
Thank you for sharing this.
I believe it is an advantage for me to grow up not knowing... though some better teaching and accommodation would have been good...I am the youngest of three daughters and so was expected to know less and therefor accepted for my differences but now at 60 and diagnosed at 58 my Family don't believe my diagnoses ,
I'm not sure what is worse!
Not knowing and being accepted or knowing but not being believed.😢
I love your" I'm a dog not a cat" analogy we are all animals.
Tangents are good we nd's just come along with you."
"Nothing about us without us"
the arrogance of nt's is so irritating to me.
I wish I could have more of a voice but I don’t have the confidence and I am not as articulate as you.
Thankyou for speaking for us.
"Not knowing and being accepted or knowing but not being believed" - that's really stark and really sad, I'm really sorry that's been your experience. 😢
You've basically described my experience about formal diagnosis. I took it in Poland one month ago (side note: 1-2 years ago there wasn't a single specialist who was diagnosing adults in my almost 1million people city). I was 99% sure I'm autistic, after few last months when I was struggling much more than usual (and that wasn't a first time this happened). Sought for formal diagnosis just to make things official. Surprise. Apparently I got only 2 points in ADOS test (12 or 14 is the threshold I believe) and are for sure not Autistic according to the therapist. For that, she said I have quite a few ADHD traits and she recommends looking for ADHD diagnosis instead. That was complete shock to me. I went on TH-cam and after just one search found a bunch of people having both ADHD and Autism at the same time (I believe this is when I discovered this channel as well :)). I felt gas-lit as hell. Apparently in Poland they still don't know that.
I'm natural contrarian, so I have no problem rejecting message I got from any authority :) Right now doing a lot of my own research and are still pretty confident I'm on the spectrum (and yes, with small ADHD mix to add to that). But I believe most people will just accept the diagnosis verdict, and big harm in their life just happened.
Thank you for sharing your story, this also helped me a lot!
Thanks for sharing your experience also! That's really dispiriting to hear about lack of professional knowledge on co-occurring autism and ADHD and how having both alter the presentations of either. Well done to keep pushing and keep doing your own research, a lot of people do give up I think at the first 'professional' invalidation. We really do have to be our own primary advocates, I'm increasingly realising..
@@amineurodivergent Now I'm reading my previous message and maybe it sounds too harsh. I need to give kudos for all the changes that happened in this field in just a decade. It's too easy to just start complaining. Even the fact that I was able to learn so much via TH-cam is huge (and all that for the price of $0). Things are progressing :)
@@kaesz00 This is also true, and good reminder for me too and my occasional frustrations - let the perfect not be the enemy of the good!!
I'm not diagnosed, but I paid for an intial consultation with a clinician at a private practice that specialises in "neuroaffirmative" diagnosis of autistic adults. They said I experienced the world "in an autistic way" and that it would be appropriate for me to look for changes I can make to my environment that would help an autistic person.
So I was wondering if it'd be valid to say I've been *identified*, if not diagnosed as such? I've had several periods of what I think were burnout in my life, and I've struggled to find employment, stay employed, make friends, have a support network, all that stuff. Right now, my existence is very simplified and I think that's helping me "cope" - basically, because I don't need to cope with very much! So I'm currently working and not in the process of getting sacked as far as I'm aware.
I guess what I wanted to say was, it might be valuable for lots of people to be provisionally identified as autistic, even if they don't meet the official diagnostic criteria for autism spectrum "disorder": it would allow them to understand their lives through the neurodiversity lens and audit their live/ tweak their surroundings in autism-friendly ways that... if they help, then fantastic, and if they don't help... then no actual diagnostic label?
I think this is a really interesting idea and would benefit a lot of people. Thanks, there's a lot of food for thought in this.
18:06 yes. Preach!
Thanks for this video. I'm not going to be able to do the fourth installment of the U. Kent course, so hearing your notes and comments is especially helpful.
Regarding the concept of being "not really troubled" or "not really having functional difficulties" because of having autism -- stating the glaringly obvious: people who aren't really troubled don't try, or succeed at, suicide.
I know that the understanding of and support for autism and autistic people has evolved a lot over the last four or five decades. I also know we have a long way to go, especially in the U.S. From what I've seen, Great Britain and Australia are light years ahead of us.
I can't find a clinician who will do a formal assessment for which I don't have to pay with blood or my firstborn. I can't find support services. I can't find even a supportive *attitude* from clinicians I've contacted. So I'm taking a new tack, and working on pumping up my No Fucks Given attitude. Hey, I've survived 75 years without formal support for my non-neurotypical brain and life experiences. I can do this, too.
BTW, I saw a new youtube channel in my feed, but haven't had a chance to listen to the first podcast. It's called The Autistic Culture Podcast. First episode is here: th-cam.com/video/W_vk3eiFhQs/w-d-xo.html
Exactly - I know the course was only flagging it as a question that's asked, but to me I think it's a bonkers perspective. Just because someone is temporarily in a conducive environment, it's only going to be ok until it's not ok, there should never be zero underlying understanding, empathy or support in place. And yet all too often that's the case.
I think it's great that a) your attitude is so battle hardened and b) you're hacked off about the lack of support in your area. Rant not over, just paused is a phrase I might start using myself! Thank you for the link to the new podcast, I wasn't aware of that so will add it onto my watch list.
All the best!
@@amineurodivergent 💙 "Battle hardened" - love it!
I think it takes a lot of courage research this for oneself as an adult, and to go further and make a video of it.
A lot of people find vidoes very helpful not only for information, but for comparison and to feel less alone in the experience.
I think it is very important have a proper identification of autism, otherwise a person can simply be seen as difficult or odd. Also not having the condition identified and thus possible access to the best support and understanding could perhaps lead to severe depression and other cross conditions.
10:34 this is my worst fear. I'm selfdiagnosed. I'm waiting for assessment. I've had 2 burnouts but I'm coping again now. Will I be diagnosed in a few months as my life right now is quite okay at the moment?
The only thing you can do is tell them about the multiple burnouts. Describe the cycle of coping and then not coping. Be honest about your struggles and try not to mask. And hope that they get it. Good luck!!
15:30 1.5 years ago I got recommended a yt vid from someone about autism who I normally watch for game related content.
I immediately recognized some of the video and after some searching decided to ask my friends if they thought I could be autistic. They where very sure I am. But now I wonder why they never told me before. I have known them for 6-7 years.
I am now on the waiting list to be assessed. In the meantime I am seeing a (non-autism specialized) therapist and after a couple of sessions they said they are very sure I have autism.
If it turns out I am autistic I am not going to be happy at all that people decided not to tell me before.
Don't be too hard on friends, I would say - it could be that they SUSPECTED you may be on the spectrum but they're not trained to diagnose people so probably felt it wasn't their place to say something that could be way off base or that they'd get things wrong. Your friends just like you for being you, which is by far the best thing about being your friends. Teachers or healthcare workers, on the other hand, who suspect and don't tell people, they're the ones paid to look after people so that's what's get me annoyed. Be patient with your friends, though, they probably didn't know for sure, they just knew that they liked you whatever else may or may not be have been going on with you. Maybe some of them could be on the spectrum too? ND people tend to be drawn towards each other much of the time.
I (48M) went to my GP hoping to get a diagnosis but he just said anxiety and gave me pills and CBT. I have my first CBT session this coming week and I'm worried it'll make things worse.
That's a little dispiriting. Have you taken the AQ Test or CAT-Q test or any of the online self tests? If you have and a GP's not listening to that, you're entitled to complain or ask for a second opinion. Def mention to your anxiety/ CBT therapist as well.
Good luck - if you're UK based, fire me off an email (amineurodivergent@gmail.com) as there's one or two people I could maybe recommend you have an exploratory chat with - the ones I'm thinking of do charge a small fee but they helped me negotiate some of this tricky terrain at the start..
I'm in Canada. I have taken the AQ test multiple times and scored over 40 each time. I'll definitely mention all this to my CBT therapist. I think part of my GP's reluctance is that he feels there's nothing he can do with an ASD diagnosis. There are no meds, no therapy, etc. The dx itself is valuable to me but not to him I guess.
@@jamesrempel8522 what a bizarre approach. You wouldn't tell someone missing a limb there's nothing that can be done about so we'll just not acknowledge it and just try to get by as best you can. You'd support the person and ask them what they need. Sigh. Thanks for sharing this, I'm increasingly seeing how common this is...
😊😊😊🎉
I Didnt get a certificate so dissapointed by that
Her self esteem went down the toilet
Yeah, self esteem going through the roof is a _good_ thing isn't it?
Caveat no kids and not going to have kids.
Wouldn't it be best to have every child screened maybe as part of some primary school medical exam and then the parents can be given resources if its somewhat likely the child has ASC?
I would think that I would have wanted my parents to know the whole time and maybe he given that information somewhere around the third stage of childhood development when I stated to develop my sense of independence. Thats typically around puberty and in the US thats typically around middle school so 12-13ish.
Then folks who are autistic will have the understanding and not build negative self images because of their natural brain processes being different than the Majority of other kids?
Like the parents know so they can avoid possible cptsd causing behavior just from allistic to autistic miscommunication and then when the child needs to start using those skills to solidfy their identity they are told "hey you actually use philips head and the majority use flat screwdrivers. Its not bad its just different, here are some ways to work around that difference"
What you've just described sounds absolutely amazing. I 100% think that's the direction we need to travel in.
Autism spectrum condition, not disorder. 🙂
100% agree. It was ASD I was diagnosed with, but I 100% prefer ASC.