Every once in awhile I feel like my self diagnosed autism isn't real and it's all an excuse. Then, I watch this video and find EVERYTHING relatable and feel incredibly validated. Thanks for sharing with us!
I was diagnosed at 18 in 2008. After years of fighting my state of Maryland I finally got in to the day program for adults with Autism in Maryland 2020. I am now thriving with a wonderful support staff. I am now getting one on one support services and art therapy for my anxiety disorders while we wait for the Autism program to open up to new people so I can get some therapy for the personal issues I am dealing with and my PTSD due to my medical issues. I do prefer person first language, but that is just what I feel more comfortable with.
I'm an autistic zebra. The main problem that my autism caused was getting people to see that I was in actual physical pain. They just put it down to my autism. That led to doctors completely misdiagnose me with another medical condition and cause me permanent harm. I wasn't diagnosed with eds until I was 23
Yes yes! Agreed! For me, it was hard to communicate/express pain in a way that neurotypicals understand. I can experience high pain levels with nothing really happening on my face.
I have the tail end of a wisdom tooth infection and the doctor didn't call me back after he promised to, this weekend. I am absolutely livid. It was so painful!
I know you don't know me, but I want you to know that you're a hero to me. The first of your videos I ever watched was regarding your EDS and 23andme. Following that was so incredibly validating of my chronic health issues, which I'd only started to suspect might actually be EDS. You have been instrumental in my journey and if you're ever in Oregon, I would go out of my way to see you
We have a free healthcare in my country. It was really helpful for me to get a diagnosis although it wasn't easy. I have ASD and ADHD. ADHD meds helped me so much it is unreal. There are some non-financial benefits I applied to so it helps too. But it is right, self diagnosis is valid especially when you would have to pay for it or you meet some .....person... who shouldn't be a doctor.
I'm SO happy to hear you compare masking to performing. I've recently noticed how it feels like I am using my "ear for music" [called gehör in Swedish] when I'm socialising, and I get the same feeling of hitting a wrong or right note when socialising as I do when I sing. Small talking with a store clerk IS a performance to me.
@@theannieelainey Very relatable!! And again, thank you for a lovely video. It recognize a lot of what you chose to talk about, and really appreciate you sharing :)
Having done my autistic journey, I know that socializing is a performance, but contextualizing it into musical theater really put into perspective just how tiring it is to be "on". I am literally putting on a show everytime I am around other people. I used to be a performer so I know how much effort and coordination goes into each move, and how exhausted you are after that you need 10 hours of sleep to recover. That is how I feel after any big social gathering. So when I can no longer perform (or refuse to perform to save energy) and I have a flat expression, that means I have hit my limit for socialization. People think I am either upset or angry, but I am just exhausted.
Took me two years to self diagnose with Adhd, and I still do want to follow up with a formal diagnosis when I’m able to, I’m not like ‘out’ as self diagnosed with many close people either but it’s honestly helped so much. At the moment I’m looking at Autism as well, my brother was actually diagnosed with Adhd and Autism when he was a teenager and I have other extended family diagnosed with Autism. 20.00 really got me because around late 2018, I wanted to unalive myself because I just felt like I wasn’t supposed to function in this ‘capitalist’ society (at the time I blamed capitalism because I didn’t realise it was actually more a case of the system being set up for more neurotypical behaviours)
I'm so grateful for you putting in this amount of effort to make this video happen - reading the comments, it's clear to me that it's already helped people! I sure hope it continues to help people in the future! I'm glad you have such a good relationship with your sister. My sister has autism, and I have EDS, we both have anxiety and short tempers. We don't get along well at all. I get really impatient with her OCD tendencies and her big stims like pacing and leg-bouncing that shakes the floor... I might be projecting my internalized ableism onto her, actually - this video has given me that as food for thought!
I saw that in the description it was said that it's possible to do captions in the video but that's not a reality anymore. CZcams ended it arguing that people didn't really use it and that when they did it wasn't good and were joking around, wich is unfortunate cause there was a million ways that they could have fixed that =/
I miss it so much , even shoddy captions are better than none but youtube yoinked them away with no warning. Although it seems like someone has captioned this one which is AWESOME!!!
This was so informative and helpful, thank you for doing this q&a and sharing your experiences. It definitely has also furthered some of my own individual questioning ahah so thank you again!
I really appreciate the tone of this video. I'm not autistic but I relate to some of the medical situations you spoke about and your input was really comforting, so thank you for that. Plus I learnt something new today :)
I didn't realize stim singing was the term for when you sing some of your words, but I totally do it and have done it for years! So cool! Also, the diagnosis bit, yikes! I was lucky enough that my parents were able to cover it somehow, but the experience was terrible. I was diagnosed in my early twenties. The psychiatrist asking me the assessment questions seemed alternately interested in helping me and impatient with me. It was so confusing. Then when the actual diagnosis time came, the two psychiatrists talking to us kept addressing my parents and acting like I wasn't in the room! It made me so mad. I vividly remember how the office we were in had all of these knickknacks on shelves all over the walls and how much I wanted to start throwing the stuff on the floor to get them to pay attention to me.
thank you so much for this......I feel less alone knowing that there are others that have similar experiences to me. and also I appreciate the validation for self Diagnosing because whew! the ongoing medical trauma is a lot.
awesome video, even as a diagnosed autistic (diagnsed at 6), so in comparison to you i have alot of privalige. there is alot i can relate to here. with masking i've burn myself out so many times in my life because of that, the worst part was in my teens and early 20s because i did not understand what burnout was, it caused a lot more sensory overload and meltdowns, there where times when i'd be hitting and biting myself multiple times a day everyday. We share some of the same stimms also.
Annie! Hello, you fabulous and definitely handsome autistic adult, you 😀 I love the way you approached this video. I always find your disability content really relatable, but this especially. The way you talk about diagnosis as first considering why/whether you want a diagnosis makes a lot of sense. I'm someone who fairly certainly has ADHD but have decided not to pursue diagnosis right now for various reasons, and I'm also exploring whether I could have mild ASD or some other kind of neurodivergence in addition to ADHD that isn't ASD. The diagnostic criteria themselves feel really limiting! My experience is that I often really relate to close people in my life who are autistic around their autistic traits (for example: OMG YES THE ENERGY BURSTS, I stim a lot esp. sing-stimming and hand flapping and mouth noises, I get major sensory overload, and I communicate super directly). My two local autistic partners think I'm probably autistic and don't recognize myself in diagnostic criteria b/c I'm a femme enby and an adult. But also some of the really big things that almost all autistic people seem to share don't apply to me (for example I HATE routine, and tend to like a lot of variety in food, music, etc., rarely watching media twice.) It's hard to know whether these things mean "not autistic," "mildly autistic," or as I have been joking with the partners, "my ADHD is just really topping the hell out of my ASD." From TikTok I get the sense that ADHD + ASD can manifest in some interesting, non-obvious ways, but I also don't trust the average mental health professional to pick up on it so, shrug? I guess it'd be nice to know if there's specific ADHD advice I shouldn't follow, for example, if I have the combo platter, but given the costs you associated and my suspicions about Medicaid not covering it, think I'll skip for now. ❤️ ❤️ ❤️ to you.
(ETA: I love that you support self-diagnosis, but I guess I do fear the appropriation bit. Like given everything I described above, I'm not sure it's appropriate for me to label myself as autistic or join the autistic community? But then also I feel kind of a way when folks are like ADHD folks, stop identifying as "neurodivergent, you're not!" and I know that the way my brain works affects my ability to socialize, like, a lot.)
It's very common to have both ADHD and ASD. Also it's very often that things about our two conditions overlap even if you don't have both, that's why it helps getting a full diagnosis. When I got mine they checked me for both and said that in my case they where 99% sure that I only had ASD. But when I watch ADHD help videos a lot of the suggestions been useful for me too. Specially when I was deeply depressed right at the start of all the help I got after my diagnosis. Also I noticed that I can't do timed routines when I'm home, I find that very restrictive and will become very unhappy. And my routines over all are rather "random" as I hate being locked in but the routine on it's own is done in the same order every time... as an example the going to bed one "first toilet, then brush my hair, brush my teeth and then lie down to sleep" but that routine can happen anywhere between 17 to 06 in the morning XP
i just realized that you haven't made any new videos in over 6 months, hope everything is ok, ive actually been reacting to some of your videos and loving them, the eds video especially because i belive i also have it
Was officially diagnosed in my early thirties. I thought the point you made about first person identifying language. It's made me examine how l think about myself and abelism. It it like speaking a second language, l hear you.
I'm glad that you are doing okay? I haven't seen one of your videos for a while and have wondered how you were doing? I understand that it is so difficult when you as a person are experiencing a disability and what you have is not in the doctor's textbook and how that can affect you in many ways? I personally have felt like I have some form of Autism? I know the feeling I do get even today from when I started needing to use a wheelchair and how I have had Doctors, Family, and friends treat me? I understand how important a diagnosis is. For example, When I am talking to people and I will notice that I will ask things like "Do you know what I mean, You know what I'm saying, You know where I'm coming from"? These are just a few things that came to mind that I experience? I know that there are two types of disability and each of them affects us in different ways and one will get you social security benefits and one will allow you to feel proud and not feel like you are accepted for who you are and that even know your disability and the pain assorted with it may not be fun it is still part of your life and you and I live with it daily. There is Medical Modole and Social Modele. If we can get people to understand that the stereotypes that disable people who are (and fill in the blank ______) with their disability and they would stop using things that make people feel scared to use the words like disability? I know that words like "Mental Illness" can be made to make people feel as if they are not worth as much or that they are not "normal" which I hate the word "Normal/Regular". "Convenience doesn't equal Accessibility, accessible equals Convenience". I like this statement because accessibility takes many different formats. I personally identify as a "DISABLED PERSON". Disability should never be considered a dirty word?
![I have cognitive dysfunction (Brain Fog) [CC]](http://i.ytimg.com/vi/w6EhIFiTh3E/mqdefault.jpg)
![I have cognitive dysfunction (Brain Fog) [CC]](/img/tr.png)
![Straw Bans Are DANGEROUS For Disabled People [CC]](/img/n.gif)
Every once in awhile I feel like my self diagnosed autism isn't real and it's all an excuse. Then, I watch this video and find EVERYTHING relatable and feel incredibly validated. Thanks for sharing with us!
I was diagnosed at 18 in 2008. After years of fighting my state of Maryland I finally got in to the day program for adults with Autism in Maryland 2020. I am now thriving with a wonderful support staff. I am now getting one on one support services and art therapy for my anxiety disorders while we wait for the Autism program to open up to new people so I can get some therapy for the personal issues I am dealing with and my PTSD due to my medical issues. I do prefer person first language, but that is just what I feel more comfortable with.
I'm an autistic zebra.
The main problem that my autism caused was getting people to see that I was in actual physical pain. They just put it down to my autism.
That led to doctors completely misdiagnose me with another medical condition and cause me permanent harm. I wasn't diagnosed with eds until I was 23
People are so dismissive of what they can't see. It is unbelievable!
Yes yes! Agreed! For me, it was hard to communicate/express pain in a way that neurotypicals understand. I can experience high pain levels with nothing really happening on my face.
@@theannieelainey me too. I call it my poker face
I have the tail end of a wisdom tooth infection and the doctor didn't call me back after he promised to, this weekend. I am absolutely livid. It was so painful!
@@theannieelaineyyou’re my best friend I really like you ❤❤❤❤❤❤❤❤❤❤
I know you don't know me, but I want you to know that you're a hero to me. The first of your videos I ever watched was regarding your EDS and 23andme. Following that was so incredibly validating of my chronic health issues, which I'd only started to suspect might actually be EDS. You have been instrumental in my journey and if you're ever in Oregon, I would go out of my way to see you
Thank you so much! I’m very honored by your message! ❤️🙏
We have a free healthcare in my country. It was really helpful for me to get a diagnosis although it wasn't easy. I have ASD and ADHD. ADHD meds helped me so much it is unreal. There are some non-financial benefits I applied to so it helps too. But it is right, self diagnosis is valid especially when you would have to pay for it or you meet some .....person... who shouldn't be a doctor.
Hello 👋
@@bivinsblinc6503 hi
I'm SO happy to hear you compare masking to performing. I've recently noticed how it feels like I am using my "ear for music" [called gehör in Swedish] when I'm socialising, and I get the same feeling of hitting a wrong or right note when socialising as I do when I sing. Small talking with a store clerk IS a performance to me.
Yes yes!! For me, that customer service high pitched voice always comes out with strangers!! 😂
@@theannieelainey Very relatable!! And again, thank you for a lovely video. It recognize a lot of what you chose to talk about, and really appreciate you sharing :)
Having done my autistic journey, I know that socializing is a performance, but contextualizing it into musical theater really put into perspective just how tiring it is to be "on". I am literally putting on a show everytime I am around other people. I used to be a performer so I know how much effort and coordination goes into each move, and how exhausted you are after that you need 10 hours of sleep to recover. That is how I feel after any big social gathering. So when I can no longer perform (or refuse to perform to save energy) and I have a flat expression, that means I have hit my limit for socialization. People think I am either upset or angry, but I am just exhausted.
Took me two years to self diagnose with Adhd, and I still do want to follow up with a formal diagnosis when I’m able to, I’m not like ‘out’ as self diagnosed with many close people either but it’s honestly helped so much. At the moment I’m looking at Autism as well, my brother was actually diagnosed with Adhd and Autism when he was a teenager and I have other extended family diagnosed with Autism. 20.00 really got me because around late 2018, I wanted to unalive myself because I just felt like I wasn’t supposed to function in this ‘capitalist’ society (at the time I blamed capitalism because I didn’t realise it was actually more a case of the system being set up for more neurotypical behaviours)
Hello 👋
I'm so grateful for you putting in this amount of effort to make this video happen - reading the comments, it's clear to me that it's already helped people! I sure hope it continues to help people in the future!
I'm glad you have such a good relationship with your sister. My sister has autism, and I have EDS, we both have anxiety and short tempers. We don't get along well at all. I get really impatient with her OCD tendencies and her big stims like pacing and leg-bouncing that shakes the floor... I might be projecting my internalized ableism onto her, actually - this video has given me that as food for thought!
I also stim sing! I’m glad I’m not the only one who does that!
singing as a stim was one of my main stims in childhood. I don't do it now because I've lost speech, but it was a main stim of mine for many years
Hey Annie, this was such a nice video and thank you for being open about it.
I just subbed to Annie Channel yesterday
I saw that in the description it was said that it's possible to do captions in the video but that's not a reality anymore. CZcams ended it arguing that people didn't really use it and that when they did it wasn't good and were joking around, wich is unfortunate cause there was a million ways that they could have fixed that =/
I miss it so much , even shoddy captions are better than none but youtube yoinked them away with no warning. Although it seems like someone has captioned this one which is AWESOME!!!
My Daughter does sing to calm down, music is her to go.
I surround myself with music! I have music on throughout the day, I play music with my meals, etc it’s a huge part of my life!
This was so informative and helpful, thank you for doing this q&a and sharing your experiences. It definitely has also furthered some of my own individual questioning ahah so thank you again!
Thank you so much!
Looking forward to this vid Annie! 🤟♿
At 1 now or Real¢a√@a9A#
Thank you, thank you, thank you for this wonderful, open, important video.
Hello 👋
I really appreciate the tone of this video. I'm not autistic but I relate to some of the medical situations you spoke about and your input was really comforting, so thank you for that. Plus I learnt something new today :)
I didn't realize stim singing was the term for when you sing some of your words, but I totally do it and have done it for years! So cool! Also, the diagnosis bit, yikes! I was lucky enough that my parents were able to cover it somehow, but the experience was terrible. I was diagnosed in my early twenties. The psychiatrist asking me the assessment questions seemed alternately interested in helping me and impatient with me. It was so confusing. Then when the actual diagnosis time came, the two psychiatrists talking to us kept addressing my parents and acting like I wasn't in the room! It made me so mad. I vividly remember how the office we were in had all of these knickknacks on shelves all over the walls and how much I wanted to start throwing the stuff on the floor to get them to pay attention to me.
thank you so much for this......I feel less alone knowing that there are others that have similar experiences to me. and also I appreciate the validation for self Diagnosing because whew! the ongoing medical trauma is a lot.
Please do more videos on this topic
Yup she should
awesome video, even as a diagnosed autistic (diagnsed at 6), so in comparison to you i have alot of privalige. there is alot i can relate to here.
with masking i've burn myself out so many times in my life because of that, the worst part was in my teens and early 20s because i did not understand what burnout was, it caused a lot more sensory overload and meltdowns, there where times when i'd be hitting and biting myself multiple times a day everyday. We share some of the same stimms also.
Annie! Hello, you fabulous and definitely handsome autistic adult, you 😀 I love the way you approached this video. I always find your disability content really relatable, but this especially. The way you talk about diagnosis as first considering why/whether you want a diagnosis makes a lot of sense. I'm someone who fairly certainly has ADHD but have decided not to pursue diagnosis right now for various reasons, and I'm also exploring whether I could have mild ASD or some other kind of neurodivergence in addition to ADHD that isn't ASD. The diagnostic criteria themselves feel really limiting! My experience is that I often really relate to close people in my life who are autistic around their autistic traits (for example: OMG YES THE ENERGY BURSTS, I stim a lot esp. sing-stimming and hand flapping and mouth noises, I get major sensory overload, and I communicate super directly). My two local autistic partners think I'm probably autistic and don't recognize myself in diagnostic criteria b/c I'm a femme enby and an adult. But also some of the really big things that almost all autistic people seem to share don't apply to me (for example I HATE routine, and tend to like a lot of variety in food, music, etc., rarely watching media twice.) It's hard to know whether these things mean "not autistic," "mildly autistic," or as I have been joking with the partners, "my ADHD is just really topping the hell out of my ASD." From TikTok I get the sense that ADHD + ASD can manifest in some interesting, non-obvious ways, but I also don't trust the average mental health professional to pick up on it so, shrug? I guess it'd be nice to know if there's specific ADHD advice I shouldn't follow, for example, if I have the combo platter, but given the costs you associated and my suspicions about Medicaid not covering it, think I'll skip for now. ❤️ ❤️ ❤️ to you.
(ETA: I love that you support self-diagnosis, but I guess I do fear the appropriation bit. Like given everything I described above, I'm not sure it's appropriate for me to label myself as autistic or join the autistic community? But then also I feel kind of a way when folks are like ADHD folks, stop identifying as "neurodivergent, you're not!" and I know that the way my brain works affects my ability to socialize, like, a lot.)
It's very common to have both ADHD and ASD. Also it's very often that things about our two conditions overlap even if you don't have both, that's why it helps getting a full diagnosis. When I got mine they checked me for both and said that in my case they where 99% sure that I only had ASD. But when I watch ADHD help videos a lot of the suggestions been useful for me too. Specially when I was deeply depressed right at the start of all the help I got after my diagnosis.
Also I noticed that I can't do timed routines when I'm home, I find that very restrictive and will become very unhappy. And my routines over all are rather "random" as I hate being locked in but the routine on it's own is done in the same order every time... as an example the going to bed one "first toilet, then brush my hair, brush my teeth and then lie down to sleep" but that routine can happen anywhere between 17 to 06 in the morning XP
@@Ariancia.Thystarian Oh interesting! But yeah, I get the impression that it's all very "your mileage may vary." 😀
Hello 👋
i just realized that you haven't made any new videos in over 6 months, hope everything is ok, ive actually been reacting to some of your videos and loving them, the eds video especially because i belive i also have it
I'm autistic as well it is really hard for me to have normal relationships with people.
Was officially diagnosed in my early thirties. I thought the point you made about first person identifying language. It's made me examine how l think about myself and abelism. It it like speaking a second language, l hear you.
So excited!! 🥰
I'm glad that you are doing okay? I haven't seen one of your videos for a while and have wondered how you were doing?
I understand that it is so difficult when you as a person are experiencing a disability and what you have is not in the doctor's textbook and how that can affect you in many ways? I personally have felt like I have some form of Autism? I know the feeling I do get even today from when I started needing to use a wheelchair and how I have had Doctors, Family, and friends treat me? I understand how important a diagnosis is.
For example, When I am talking to people and I will notice that I will ask things like "Do you know what I mean, You know what I'm saying, You know where I'm coming from"? These are just a few things that came to mind that I experience? I know that there are two types of disability and each of them affects us in different ways and one will get you social security benefits and one will allow you to feel proud and not feel like you are accepted for who you are and that even know your disability and the pain assorted with it may not be fun it is still part of your life and you and I live with it daily. There is Medical Modole and Social Modele. If we can get people to understand that the stereotypes that disable people who are (and fill in the blank ______) with their disability and they would stop using things that make people feel scared to use the words like disability? I know that words like "Mental Illness" can be made to make people feel as if they are not worth as much or that they are not "normal" which I hate the word "Normal/Regular".
"Convenience doesn't equal Accessibility, accessible equals Convenience". I like this statement because accessibility takes many different formats. I personally identify as a "DISABLED PERSON". Disability should never be considered a dirty word?
Thank you very much for doing this!
thank you so much for sharing flapping with closed fists!!! eds is making it harder and harder for me to flap. im crying this is so helpful
Excellent video, great advice there.
Ah. I can really relate to this perspective on diagnostic processes, though from the perspective of EDS. (The autism was established years ago.)
💕💕💕
thank you
When I start losing speech or am having a hard time saying something, I also sing it (except I’m a terrible singer)
🙋🏼
I'm British so I haven't got a clue where ur accent is from! 🤣🇱🇷
Wtf. CZcams isn't letting me speed up this video for some reason
Is it true that you can see demons?
You're intro women? Are you...❔❔❔❔❔❔