It honestly feels like a weight is taken off of your chest once you have a confirmed diagnosis, I always felt like something was missing/wrong when I would get other diagnosis, like there was parts that fit and others that were just out right Not Me or my experience. Then after doing LOTS OF RESEARCH and waiting almost 2 years to finally get in to see a new psychiatrist with all my findings, I genuinely cried when they told me "yes, I can confidently say you have autism". I not only felt like I now knew who I was, but how I can help/integrate aids and things to help myself get through a day. I'm still struggling in a large majority of things, but I'm not as hard on myself and give myself the space to relax around things that I Know I am not going to get right on the first try. I'm more likely to take a day to paint or watch Jenna Marbles videos because I Genuinely need to decompress and relax my system with Happy things.
No worries at all with regards to ending on a negative note. People need to hear the full gamut of experiences that can happen among the neurodivergent and other differently abled people. I often wonder about the loss of cultural capitol that is incurred among late diagnosed neurodivergent people. We miss out on much of the typical acculturation processes of childhood and adolescence and can thus grow up unable to optimally adjust to society as a result. So whenever a late diagnosis occurs getting one's life on the right track is so much more complicated than simply picking up the pieces and moving on. I honestly don't think many of the agencies that provide various forms of support for disabled people are operating with a sufficient understanding of this aspect of things. Thanks for sharing!
THIS! Even though I'm relatively low-support-needs, I've always felt like I wasn't quite "a real person" because of this and never had a good explanation for it before my dx.
I got on the NHS last year and the waiting list time was 2 years, but luckily I was able to request that the diagnosis would be done under Psychiatry UK under the NHS' Right To Choose. I also had impostor syndrome as a late-diagnosed autistic with getting a formal diagnosis, and the 2-year wait would have been a lot for me. The whole experience was pleasant for me with Psychiatry UK, I only had to wait for a week before my diagnosis. Filled in forms before the appointment with a person who's known me for a while, so the psychiatrist went through those during the session, and the appointment was done via video call. We discussed books since that was my special interest, and was recommended a few. Still waiting for the diagnosis letter but I'm not expecting much in terms of support sadly.
One of my favorite things since my dx (less than 2 months ago) is hearing other peoples' diagnosis stories. It sucks that they were like, "Yep, you got the tism, good luck with that" then alley-oop'd you out with minimal support... especially after seeing all the support your brother got. Thank you for being on here and sharing your experiences, good and bad.
Diagnosis for autism too often seems like a lottery where's it's just a question of luck whether a person gets a supportive and knowledgeable clinician or not. Just the fear of being rejected or dismissed can be enough to mean someone doesn't even try for a diagnosis. In terms of support I suspect children and anyone else still in education will be seen as much more of a priority. They certainly deserve that support but adults need proper support as well. As someone gets older they may even need more support as they have had many more years of struggle; sadly they will too often be written-off on the mistaken assumption they have "learned to cope".
I was so scared during my autism assessment that I could barely talk at first. I got better as time went on. They were very nice. They told me right away as well that they were diagnosing me with autism. I didn't know that it was level 2 until they sent the paperwork though. I am in the USA. There is not much support here for adults either. There is a once monthly adult online autism group. It is somewhat helpful.
I was diagnosed a few months back and im definitely still trying to understand it and process it. I was the same way of doing a bunch of research about it and relating incredibly to everything I read but still having a weird imposter syndrome about it. I watched other autistic TH-camrs before and after diagnosis but lately I feel I relate the most to yours. I am trans and I dunno how you identify rn(I saw the video about autigender but I don't wanna assume anything) but your content feels to me like it has a more queer leaning autistic vibe that I relate to more than other channels. I am still kinda struggling to figure out what to do with the information, I have only "known" for sure I am autistic for a few months but at least I know now. Love your videos.
I dont know why I got excited about the possibility that the tshirt you are wearing is x-files!! 😂 I lived for that when i was younger. I had to sneak downstairs to watch it as it wasnt allowed in my Christian household. I also freaked out when i found out my parents would be interviewed as my mum didn't get why i was going for the diagnosis as she blamed all my issues on my addiction to drugs. She worked with Autistic children and could not see it in me so i thought she would somehow talk the diagnostic team out of giving me the diagnosis! I was terrified of being wrong about everything and was doubting myself after being wrongly diagnosed for years in the mental health system. I am now trying to go sober (long-term this time) and have no idea how to cope/survive in this world without an escape! I feel like i will crash and burn at any moment and am terrified about the length of time it could take to feel anywhere near ok as i reduce and come off prescribed pain meds (probs take aprox 2/3years) that dont help. I will have no other pain relief alternatives going forward other than paracetamol and heat patches which im already using. All the things i loved to do i cant do now due to my pain levels. I feel like i have destroyed myself with surviving thus far that i now have no option in terms of actually doing much with my life that i would want to do. Im 40 and am terrified of years of endless pain that i cant get under control to even cope with being out of bed most days. On a positive note, for the first time since aprox age 15 when i started experiencing pain, a medical professional actually did a physical check and discovered sciatica instead of just fobbing me off. I have for aprox 2 decades being doing the stretches recommended by physio to now discover that it was likely making everything worse and I'm worried im damaged beyond repair to ever enjoy life again (other than watching others do stuff on TH-cam). I had never had any scans or physical exams but was/am such a people pleasing fool to fight my corner and push for more. It was just by luck that last week someone examined me! I also am living in an area that provides no support for my ASD and ADHD diagnosis and the mental health team wont even see me these days so I'm on my own and struggling to win back my benefits everytime it's under review. I hear from old friends who live just outside of Newcastle that are getting loads of help with ASD and ADHD diagnosis (thanks to the postcode lottery). It is so frustrating but then everything is currently as pain sets off all my sensory issues and I'm incapable of doing let alone enjoying anything i previously used as distraction. Thank you for sharing your experience x
the health care system "congratulations thou got autism. You can F off now thank you". Well that was my experience, lol. no matter how low I set my expectations, those people always find a way to disappoint me. still I wonder how my life would've went if I didn't get those 2 autism diagnoses, or either one of them. I don't think the world is ready yet for our (autistic) differentness. I'll think I skip boxin day this year, I got the 365 other days for it. However it is good to see that for other people their diagnoses (and follow up) went better than mine. I think I can learn from other people's experiences as I neither really got the chance growing up autistic or adapt to being autistic at a later age in life. how paradoxical that might sound. So, Dana, thank you for your videos.
I have my autism and adhd assessment day tomorrow and then go back in a few weeks to find out results- i'm super nervous because it seems that everyone's assessment process is different so idk what to expect... I've been filming little clips for myself along the way and am hoping to upload them after this assessment process is complete so that I can share my experience as well! Thank you for sharing your story!
I got a diagnosis privately (i could afford it and didn't want to wait for months or years in the public system- I'm in France). Unfortunately, as I went primarily for ADHD, the document I got mentions only "autistic traits" as a sidenote (even though the psychiatrist told me with confidence that I have both). I was relieved to finally have an answer (I'm 45 and had been struggling all my life...) but the vagueness of the ASD part on the document really does not help me to advocate for myself 😅 I haven't told my employer yet (diagnosed in july 2023), and have meltdowns regularily because of what's expected of me. Luckily my new GP is great, and I'm seeing a new psychologist (once again, in the private sector, so i had to search for a good professional myself) she's helping me decide how to bring up the subject at work, so hopefully things will get better soon ! But yeah, seems like there is nothing in place in the public sector to support autistics diagnosed as adults 😑 And I'm well aware that I'm greatly priviledged to have the financial means to pay for all this, and the mental capacity to do the admin (it's hard, but I manage without outside help) so I'm really just ranting and trying to say that I empathise with all those who cannot pay... once you're diagnosed you're pretty much left alone and it SUCKS.
I was lucky enough to be diagnosed by someone that specialised in Autism. But diagnosed as an adult, there isn't a lot of support in general here as well.
Hopefully i can get through this process myself. Things are obviously a bit different for me being in the US, I had an appointment for like, yesterday but called it off out of a concern over being billed for like 400 bucks i dont have, starting the process again today after meeting with a case manager yesterday who assured me insurance should cover it despite the paperwork saying otherwise? i dunno. I do feel a bit imposter-y though trying to learn about this and figure out if this is something I have without the formal diagnosis, also a bit worried i get there and the results come up negative.
It is a thing that there's no instruction or teaching for autistics since there was for aspergers syndrome prior to June 1st 2013, when aspergers was included in autism. Why were people diagnosed aspergers given instruction and social skills teaching back when it existed, yet nothing for autistic people then or now ? What's the difference ?
I waited about a year for my assessment. Guess I was lucky with the waiting time. I had no idea an informant was required when I was referred at which point I kind of panicked. My plan was get the diagnosis and then tell my dad or not tell my dad if they said I wasn't autistic. So I had no choice but to tell my dad I thought I might be autistic and needed an informant. Luckily my dad was still alive at the time. There was no one else alive who knew me as a young child. My mum had passed away 11 years before, I wish she still been alive as she would have been a better informant. My assessment was done over a zoom call, took 90 minutes and my dad was done over the phone. What do they do if no one who knew me as a child is no longer alive? I asked them this back then and didn't get an answer.
Yes, this is a genuine concern. I'm 45, and currently awaiting screening. My parents and both grandparents have passed, and I'm estranged from my much younger siblings, one of whom was diagnosed as a child. I've been in cyclical burnout for years and have become increasingly socially withdrawn as a result, barely functioning enough to go to work or even look after myself properly. Everything else has fallen away, including the two or three genuine friends I did have. The only people who "know" me day-to-day are my work colleagues, but they very much get the masked version of me. Sure, they can attest to my so-called quirks when the mask slips, but they can't speak to my autistic traits the way someone who actually knows me could. I’ve made the diagnostic service aware of this, but they’ve not commented as yet. So, we'll see. Another fab video, too 👍
@@daviniarobbins9298 Sorry for your loss. And thank you for the extra info. I am in contact with a fantastic support worker at the autism service that does the NHS screening in my area. I will ask them if my situation poses a genuine barrier to being screened. My social challenges have meant a lifetime of being misunderstood and never being able to maintain relationships. Hence why I have nobody in my life today. And of course, I can’t do anything about my parents and grandparents. And because I am 10 and 15 years older than my siblings, they can’t attest to me as a child or early teen. My parents moved around a lot when I was little, and never made any lasting friendships themselves. And there were no aunts and uncles or anything like that (well, there were, but they lived abroad, and so we hardly saw them). So again, there’s nobody from that time - the 80s and early 90s - who can vouch for me. But I do have vivid memories of my childhood, and have written pages and pages of notes with examples of things and events and experiences that I feel demonstrate my autistic traits. Hopefully that will help.
I wasn't required to bring someone who knew me as a child to my autism assessment in 2023. I did being some school documents. Siblings might be useful. My younger sister helped out more than my mother in my neuropsych exam in 2006. I wasn't diagnosed as autistic then. The assessment was general, not for autism and the assessor was confused about autism and whether or not I had it. (She said I might have been autistic as a child but I wasn't as an adult).
I officially got my diagnosis today! 🎉❤
Congratulations!!! 🥳🥳🥳
Congrats!
you're one of us now ! 😉 welcome home
It honestly feels like a weight is taken off of your chest once you have a confirmed diagnosis, I always felt like something was missing/wrong when I would get other diagnosis, like there was parts that fit and others that were just out right Not Me or my experience. Then after doing LOTS OF RESEARCH and waiting almost 2 years to finally get in to see a new psychiatrist with all my findings, I genuinely cried when they told me "yes, I can confidently say you have autism".
I not only felt like I now knew who I was, but how I can help/integrate aids and things to help myself get through a day. I'm still struggling in a large majority of things, but I'm not as hard on myself and give myself the space to relax around things that I Know I am not going to get right on the first try.
I'm more likely to take a day to paint or watch Jenna Marbles videos because I Genuinely need to decompress and relax my system with Happy things.
No worries at all with regards to ending on a negative note. People need to hear the full gamut of experiences that can happen among the neurodivergent and other differently abled people.
I often wonder about the loss of cultural capitol that is incurred among late diagnosed neurodivergent people. We miss out on much of the typical acculturation processes of childhood and adolescence and can thus grow up unable to optimally adjust to society as a result. So whenever a late diagnosis occurs getting one's life on the right track is so much more complicated than simply picking up the pieces and moving on. I honestly don't think many of the agencies that provide various forms of support for disabled people are operating with a sufficient understanding of this aspect of things. Thanks for sharing!
THIS!
Even though I'm relatively low-support-needs, I've always felt like I wasn't quite "a real person" because of this and never had a good explanation for it before my dx.
I got on the NHS last year and the waiting list time was 2 years, but luckily I was able to request that the diagnosis would be done under Psychiatry UK under the NHS' Right To Choose. I also had impostor syndrome as a late-diagnosed autistic with getting a formal diagnosis, and the 2-year wait would have been a lot for me.
The whole experience was pleasant for me with Psychiatry UK, I only had to wait for a week before my diagnosis. Filled in forms before the appointment with a person who's known me for a while, so the psychiatrist went through those during the session, and the appointment was done via video call. We discussed books since that was my special interest, and was recommended a few. Still waiting for the diagnosis letter but I'm not expecting much in terms of support sadly.
One of my favorite things since my dx (less than 2 months ago) is hearing other peoples' diagnosis stories. It sucks that they were like, "Yep, you got the tism, good luck with that" then alley-oop'd you out with minimal support... especially after seeing all the support your brother got. Thank you for being on here and sharing your experiences, good and bad.
Diagnosis for autism too often seems like a lottery where's it's just a question of luck whether a person gets a supportive and knowledgeable clinician or not. Just the fear of being rejected or dismissed can be enough to mean someone doesn't even try for a diagnosis. In terms of support I suspect children and anyone else still in education will be seen as much more of a priority. They certainly deserve that support but adults need proper support as well. As someone gets older they may even need more support as they have had many more years of struggle; sadly they will too often be written-off on the mistaken assumption they have "learned to cope".
I was so scared during my autism assessment that I could barely talk at first. I got better as time went on. They were very nice. They told me right away as well that they were diagnosing me with autism. I didn't know that it was level 2 until they sent the paperwork though.
I am in the USA. There is not much support here for adults either. There is a once monthly adult online autism group. It is somewhat helpful.
I was diagnosed a few months back and im definitely still trying to understand it and process it. I was the same way of doing a bunch of research about it and relating incredibly to everything I read but still having a weird imposter syndrome about it. I watched other autistic TH-camrs before and after diagnosis but lately I feel I relate the most to yours. I am trans and I dunno how you identify rn(I saw the video about autigender but I don't wanna assume anything) but your content feels to me like it has a more queer leaning autistic vibe that I relate to more than other channels. I am still kinda struggling to figure out what to do with the information, I have only "known" for sure I am autistic for a few months but at least I know now. Love your videos.
I dont know why I got excited about the possibility that the tshirt you are wearing is x-files!! 😂 I lived for that when i was younger. I had to sneak downstairs to watch it as it wasnt allowed in my Christian household. I also freaked out when i found out my parents would be interviewed as my mum didn't get why i was going for the diagnosis as she blamed all my issues on my addiction to drugs. She worked with Autistic children and could not see it in me so i thought she would somehow talk the diagnostic team out of giving me the diagnosis! I was terrified of being wrong about everything and was doubting myself after being wrongly diagnosed for years in the mental health system. I am now trying to go sober (long-term this time) and have no idea how to cope/survive in this world without an escape! I feel like i will crash and burn at any moment and am terrified about the length of time it could take to feel anywhere near ok as i reduce and come off prescribed pain meds (probs take aprox 2/3years) that dont help. I will have no other pain relief alternatives going forward other than paracetamol and heat patches which im already using. All the things i loved to do i cant do now due to my pain levels. I feel like i have destroyed myself with surviving thus far that i now have no option in terms of actually doing much with my life that i would want to do. Im 40 and am terrified of years of endless pain that i cant get under control to even cope with being out of bed most days. On a positive note, for the first time since aprox age 15 when i started experiencing pain, a medical professional actually did a physical check and discovered sciatica instead of just fobbing me off. I have for aprox 2 decades being doing the stretches recommended by physio to now discover that it was likely making everything worse and I'm worried im damaged beyond repair to ever enjoy life again (other than watching others do stuff on TH-cam). I had never had any scans or physical exams but was/am such a people pleasing fool to fight my corner and push for more. It was just by luck that last week someone examined me! I also am living in an area that provides no support for my ASD and ADHD diagnosis and the mental health team wont even see me these days so I'm on my own and struggling to win back my benefits everytime it's under review. I hear from old friends who live just outside of Newcastle that are getting loads of help with ASD and ADHD diagnosis (thanks to the postcode lottery). It is so frustrating but then everything is currently as pain sets off all my sensory issues and I'm incapable of doing let alone enjoying anything i previously used as distraction. Thank you for sharing your experience x
the health care system "congratulations thou got autism. You can F off now thank you". Well that was my experience, lol. no matter how low I set my expectations, those people always find a way to disappoint me. still I wonder how my life would've went if I didn't get those 2 autism diagnoses, or either one of them. I don't think the world is ready yet for our (autistic) differentness. I'll think I skip boxin day this year, I got the 365 other days for it.
However it is good to see that for other people their diagnoses (and follow up) went better than mine. I think I can learn from other people's experiences as I neither really got the chance growing up autistic or adapt to being autistic at a later age in life. how paradoxical that might sound.
So, Dana, thank you for your videos.
I have my autism and adhd assessment day tomorrow and then go back in a few weeks to find out results- i'm super nervous because it seems that everyone's assessment process is different so idk what to expect... I've been filming little clips for myself along the way and am hoping to upload them after this assessment process is complete so that I can share my experience as well! Thank you for sharing your story!
Shit I‘m autistic killed me
thank you for sharing that information.
I got a diagnosis privately (i could afford it and didn't want to wait for months or years in the public system- I'm in France). Unfortunately, as I went primarily for ADHD, the document I got mentions only "autistic traits" as a sidenote (even though the psychiatrist told me with confidence that I have both). I was relieved to finally have an answer (I'm 45 and had been struggling all my life...) but the vagueness of the ASD part on the document really does not help me to advocate for myself 😅 I haven't told my employer yet (diagnosed in july 2023), and have meltdowns regularily because of what's expected of me. Luckily my new GP is great, and I'm seeing a new psychologist (once again, in the private sector, so i had to search for a good professional myself) she's helping me decide how to bring up the subject at work, so hopefully things will get better soon ! But yeah, seems like there is nothing in place in the public sector to support autistics diagnosed as adults 😑 And I'm well aware that I'm greatly priviledged to have the financial means to pay for all this, and the mental capacity to do the admin (it's hard, but I manage without outside help) so I'm really just ranting and trying to say that I empathise with all those who cannot pay... once you're diagnosed you're pretty much left alone and it SUCKS.
I was lucky enough to be diagnosed by someone that specialised in Autism.
But diagnosed as an adult, there isn't a lot of support in general here as well.
I get tested tomorrow! I hope I can go full unmasked.
Thanks!😁
Hopefully i can get through this process myself. Things are obviously a bit different for me being in the US, I had an appointment for like, yesterday but called it off out of a concern over being billed for like 400 bucks i dont have, starting the process again today after meeting with a case manager yesterday who assured me insurance should cover it despite the paperwork saying otherwise? i dunno.
I do feel a bit imposter-y though trying to learn about this and figure out if this is something I have without the formal diagnosis, also a bit worried i get there and the results come up negative.
Hi and greetings to Otis :3
Great video!😁
It is a thing that there's no instruction or teaching for autistics since there was for aspergers syndrome prior to June 1st 2013, when aspergers was included in autism.
Why were people diagnosed aspergers given instruction and social skills teaching back when it existed, yet nothing for autistic people then or now ?
What's the difference ?
I waited about a year for my assessment. Guess I was lucky with the waiting time. I had no idea an informant was required when I was referred at which point I kind of panicked. My plan was get the diagnosis and then tell my dad or not tell my dad if they said I wasn't autistic. So I had no choice but to tell my dad I thought I might be autistic and needed an informant. Luckily my dad was still alive at the time. There was no one else alive who knew me as a young child. My mum had passed away 11 years before, I wish she still been alive as she would have been a better informant. My assessment was done over a zoom call, took 90 minutes and my dad was done over the phone.
What do they do if no one who knew me as a child is no longer alive? I asked them this back then and didn't get an answer.
Yes, this is a genuine concern. I'm 45, and currently awaiting screening. My parents and both grandparents have passed, and I'm estranged from my much younger siblings, one of whom was diagnosed as a child. I've been in cyclical burnout for years and have become increasingly socially withdrawn as a result, barely functioning enough to go to work or even look after myself properly. Everything else has fallen away, including the two or three genuine friends I did have. The only people who "know" me day-to-day are my work colleagues, but they very much get the masked version of me. Sure, they can attest to my so-called quirks when the mask slips, but they can't speak to my autistic traits the way someone who actually knows me could. I’ve made the diagnostic service aware of this, but they’ve not commented as yet. So, we'll see.
Another fab video, too 👍
@@stuart162 In my case they insisted on someone who knew me as a 4 to 5 year old. There was only my dad who has since passed away.
@@daviniarobbins9298 Sorry for your loss. And thank you for the extra info. I am in contact with a fantastic support worker at the autism service that does the NHS screening in my area. I will ask them if my situation poses a genuine barrier to being screened. My social challenges have meant a lifetime of being misunderstood and never being able to maintain relationships. Hence why I have nobody in my life today. And of course, I can’t do anything about my parents and grandparents. And because I am 10 and 15 years older than my siblings, they can’t attest to me as a child or early teen. My parents moved around a lot when I was little, and never made any lasting friendships themselves. And there were no aunts and uncles or anything like that (well, there were, but they lived abroad, and so we hardly saw them). So again, there’s nobody from that time - the 80s and early 90s - who can vouch for me. But I do have vivid memories of my childhood, and have written pages and pages of notes with examples of things and events and experiences that I feel demonstrate my autistic traits. Hopefully that will help.
I wasn't required to bring someone who knew me as a child to my autism assessment in 2023. I did being some school documents.
Siblings might be useful.
My younger sister helped out more than my mother in my neuropsych exam in 2006. I wasn't diagnosed as autistic then. The assessment was general, not for autism and the assessor was confused about autism and whether or not I had it. (She said I might have been autistic as a child but I wasn't as an adult).
@@Catlily5 Your assessor sounds like an idiot. You don't grow out of autism. You are either autistic or you are not.
I love your videos! (Am nt)