Listen to Autistic Voices. Stop using Mild or Severe Autism as a Label
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- เผยแพร่เมื่อ 8 ก.ย. 2024
- While it's true a few people will self identify as having mild or severe Autism, I'd venture to guess a lot of that comes from internalized ableism. Or just straight up ableism. Also, many people who are considered having "Severe" autism, actually have co-occurring conditions. That is valid and needs to be communicated, but saying they are severe autistic basically comes across as "they are more of a problem for society," which again, is ableist.
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#autism
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Amanda, I LOVED the way you described the spectrum of autism! They call it ASD now, which means Autism Spectrum Disorder, but so many people don't understand the "spectrum" part, which you so eloquently explained. And also the fact of co-morbidities that go along with autism (even for "low support needs" people).
There's no "mild" or "severe" autism, and even saying "low" or "high" support needs is very misleading. I think when people hear "low support needs", or "high functioning", it minimizes the extreme difficulty those of us who are autistic have trying to live in this world that isn't made for us.
As a 60 year old recently diagnosed autistic woman, I have realized that I am in a burnout-skill regression phase of my life, and have been for the past several years. There are so many things I can't do anymore, and I can't even explain WHY I can't, I just CAN"T! And knowing now that I am autistic, looking back at the many times in my life when I found myself unable to work (but I had no words for WHY, I just wasn't able to, I couldn't function), now it all makes sense. I was in a burnout, and a skill regression!
The way you explain things helps me to understand myself and how autism affects me, and I thank you for that. ❤
The skill regression is so frustrating, because like you said, there's an awareness of how you used to be able to, but now it's either much harder or just impossible. And often it's subtle over time. Not like a stroke that has a delination of before & after to make it makes sense to you or loved ones.
@@i.am.mindblind Yes, that's it exactly. 👍
I'm in in an autism support group here in San Francisco, and your videos are a frequent topic of discussion ❤❤❤ It's almost become an inside joke that some newbie always comes in and says something like "there was this one video by this one lady, mind blind or something" and everyone who's a regular in the group simultaneously: "AMANDA!" 😂
Omg I love that! Wow! That makes me feel so good, thank you for letting me know. Seriously I have a weird perception of being so invisible, I think partly due to having aphantasia and not being able to visualize myself. But hearing that I'm sparking conversations about important topics really is awesome. Also thank you SO much for the super thanks! I really appreciate that more than you can know! 🌻🌻🌻
That's really cool! 🥰
I was also instantly drawn to the idea of reducing decision fatigue by eliminating wardrobe variation. I didn’t have the money at the time to implement that kind of change, but I’ve effectively done it now. I vary colors and am not against design variances, but I generally wear the same brand tshirt and shorts (different brand from the shirts) every day. And I love it.
There are some days where I'll absolutely reach for the plain shirt again. But it's been fun to add in some style. I think realizing it doesn't have to be all or nothing helps too. I often fall into thar black and white thinking. If people are used to seeing me dressed plainly, it feels like a lot to be in bold colors. But now I'm more okay with dressing for my needs, not other people. 😊
You are great! The problem is that the society doesn’t value what you do by money. It doesn’t mean you or your job as a mom, TH-camr, writer are any less. I have the same diagnosis as you. But I’m the opposite. I can hold a tech job and live independently. But I can’t live with other people like a partner, let alone having kids. Appreciate your honesty and passion for disability rights.
Autism = spiky skillset.
My observation is your "support level" is inherently variable: I very rarely have gone into any form of shutdown, but one was so total I almost had an ambulance called for me, it was likely a catatonic shutdown. That would be a 3, right? Then there is burnout, and that leaves you at a higher support needs for an extended period of time, and that can lead more readily to shutdowns as well as meltdowns. When you are in any of those three, you have a heightened support level requirement until things go back to "normal" for you.
Observation: support level has a pretty tight correlation with stress and how well it is handled.
My current burnout started over 2 years ago and I am also totally financially dependent on my husband. I could cry thinking about how lucky I am that he has a stable, well paying job. Also we have no kids. The guilt really gets to me some days after a life of internalizing that "success" is how much money you make. The skill regression is so real and really gets to me sometimes.
As always, THANK YOU so much for these videos. I can never put these thoughts into words and I just nod along the entire time because I've never heard anyone else describe exactly my experiences.
Thanks for your incite again, wish me luck I am going to the super Walmart tomorrow.
Check out your local Walmart, many now have sensory friendly hours. They may not align with your availability though. But if they do that could be helpful! Good luck.
@@i.am.mindblind They do, going in the middle of the day it should not be too bad...
This is a great video Amanda! This is a very important topic because I've been thinking a lot about what people mean when they say these terms. It doesn't feel realistic to think that some are mild and some are severe because Autism is so complex and every Autistic person struggles in different ways and have different support needs. Also I've learned by many other Autistic people that support needs fluctuate through life depending on you go through and this is something I've personally experienced. When I decided to become independent my life crashed and all my hidden struggles came up to the surface. That's when I realized that something is going on with me and I need to figure it out. I've learned about neurodivergence in highly masked women and found so much validation. For a very long time I didn't understand why I couldn't do what was expected of me from society and every job a had was burning me out. When I try to explain this to authorities and people in my life they don't take it seriously and I get the feeling that they are judging me and not believing me. This is making everything worse. Thank you so much for talking about this!
What you described about being able to rely on your husband’s wage and support is not something a person should have to feel guilty about. This was the norm not so many decades ago, it was the way most families expected to live. To my mind, it is yet another example of society making things more difficult for the average person. It didn’t used to be like this, it was more likely a wife and mother would be looked down on for working. Being a mother is a full time job, it should still be a normal accepted way to live. You are a provider, in the same way your husband is a provider, you just have different roles which when added together makes a family unit. I find it in many ways immoral that a mother is expected to employ someone else to look after their kids so that they can go to work - possibly as someone who looks after someone else’s kids for a living.
I hate that we feel so defensive in public support needs conversation. I totally get it, to be clear. I’m right there with you. But we shouldn’t have to. It’s not a competition. It’s not a dichotomous situation. I’m telling you this as I tell myself-you are not obligated to diminish your own experience for the sake of others. Your struggles are *your* struggles, and sharing them with the community in no way undermines the struggles of anyone else. You do *not* deserve to carry any guilt about that whatsoever.
I appreciate this very much. 🌸
Amanda, I LOVED your honesty and integrity regarding the "severe" autism discussion. I asbolutely need more autistic people and disability advocates discussing the spectrum of autism, support needs & and "functioning" labels with more nuance & examples, as well as breaking down the ableism in these labels. I keep hearing the same rhetoric about how functioning labels are ableist, and I'm fully on board, but I still feel this conversation needs to be pushed farther (you've said the most out of everyone I've listened to!). Please continue this discussion- you feel like the right person for the job!
Thank you, I'm sure my frankness will get me in trouble somehow, but I'm learning outloud and doing the best I can. I know there are Autistic people living who need full time support, but I still feel strongly it does a disservice to them to label them a static "severe" label. There have been some labeled that and then were assumed they couldn't talk, but once given access to a computer were able to communicate in ways that people just assumed they couldn't. Artificially limiting their abilities. So yeah, it's complicated but important discussion.
@@i.am.mindblind Yesss! This is such an important point!! When we centre the discussion on Allistic people's experience of us, we do the autistic community a huge disservice. My experience has exclusively been "you don't look/seem autistic," whereas someone who is nonverbal might more obviously present as autistic, and yet we both have a wide range of things we can and can't do without support, and the allistic community largely separates us into two distinct categories, stripping the agency of one, and not giving enough support to the other.
@@LoveCrumb And they forget all the people in the middle which is a lot of people.
@@Catlily5 Yes, absolutely!
I had no idea I was "masking" either until about a year and a half ago ... until then I was just trying to "fake it til you make it" and also always was told what a good actress I am, and how good I am at fitting into all different groups... yeah, because I just did what they did so I wouldn't look like a weirdo.
thank you for discussing the exploration of dressing to accommodate sensory needs! i have a strong sense of personal style when it comes to clothing but have areas of discomfort when it comes to certain aspects like sleeve length, rise of pants, etc. i have a lot of clothing that my intensely masked self used to wear but i haven’t worn in years because of the sensory discomfort. i’ll be doing a closet clean out soon and i definitely plan on shifting my wardrobe to be more accommodating! i’m eager to do this and cut down on how much mental energy it takes to get dressed comfortably every day.
You're welcome! Breaking down exactly what sensory issues I have and then specifically only buying clothes that address it makes getting dressed so much more fun that's for sure!
I really related to when you were talking about clothes and outfits Amanda. You look fab in your outfit in this video. The colours and style really suit you 😊💕
Thank you! I just really love this outfit! I'm so glad you could relate too. ❤️
Love you! Seeing a new post from you fills up my heart! Commenting to boost your content but my brain can’t absorb information right now. Someone please like my comment, so I’ll get notified to come back later
Aw! This message fills my heart. ♥️♥️♥️
I imagine a spectrum like a color wheel/circle, where there are different colors, different brightness and different contrasts.
I'm torn on what terms should be considered "safe" to use and why. On the one hand, terminology is mostly for informing the uninitiated, so "low functioning" or "high functioning" does strike me as a tolerable "shorthand" way of quantifying what level of support is needed for the autistic person they're speaking to, and how far they'll have to be prepared to accommodate an autistic person's needs if they'd like to associate with them.
On the other hand, the people being described may feel diminished by a lacking or too simplistic definition, so I can understand that level as well. I just would like it if both ends could be reasonably met without anyone getting too precious about either being too dismissive, or requiring that they feel absolutely, 100%, accurately described and being stridently unsatisfied if they feel the definition is lacking.
If strangers don't know all the correct terminology, there's no sense in scolding them for their lack of definitional nuance as they haven't learned enough to be able to detect those subtle variations of culture/personal opinions for themselves in the first place.
I was reading the comment of the person in the support group about many of the group members talking about your videos, you are doing an awesome service for us and you do what you do very well. ❤Because of people like you spreading this awareness I finally get it @ 69 years. Not diagnosed but have mentioned to my MH doc. I see for depression, anxiety and ADHD. I don’t think I ever masked, I knew I was different but for some strange reason I didn’t think it was a bad thing, I liked being different, still do ❣️as a child I was bullied, I was bullied where I worked for 40 years by co-workers in a HMO no less. I mostly thought I was bullied because I was heavy. Wow 😮
Thank you so much for your honest videos. I’m late diagnosed adhd and learning about autism for my kids. ❤
Thank you, Amanda. Your videos help much.
I think I have been in the burnout/ skill regression stage since the whole c19 thing and being harassed by my neighbor about the same time sent me over the edge, depression became uncontrolled, still is. Now the memory problems happening I thought 😢I was getting dementia,scared the shit out of me. I’m 69 with a ton of other heath issues, I have lost trust in most of the medical field and a good part of humanity. I thought we were supposed to have peace after retirement. Silly me
It's so hard that Burnout can last so long, but so so many years of stress and anxiety from being undiagnosed can really take a toll.
We have a random Amazon box on our kitchen floor for the same reason 😀
Could you include a link to your other channel in your next video?
Thanks!
Thank you again. You are ever so kind. I really appreciate you. ❤️🌹
Sending love
Thank you so much for your support! It means the absolute world to me. I'm so glad my video has meant something to you. ❤️❤️
Aphantasia? Is it because the demon segment was too scary? I feel you.
I'm not sure what you're talking about?
@i.am.mindblind My guess: it was a joke about your condition meaning not liking the movie called Phantasia. Using the term a-phantasia as a pun.
Ah. I don't think I'm familiar with that movie
@i.am.mindblind An old/classic animated Disney movie, short on plot but considered to have been groundbreaking I think. I don't know a huge amount about it beyond having seen it many years ago. I also wouldn't be at all surprised if there have been numerous other pieces of media by the same name.
I also might have been completely wrong in my guess about the meaning of the comment we're replying to 🤷🏻♂️
@@Isaac-hm6ihI liked that movie. It is creative for its time.
Its odd your members are going up but your revenue is going down....
Yeah, people aren't watching as long, they are skipping ads or have ad blockers, or my videos aren't getting as much money per view anymore or an assortment of all of the above. 🤷🏼♀️
@@i.am.mindblind I do not use an add blocker.
Thank you, I appreciate it.
Oh! I didn't know if I press "skip this add" You get not paid! Just knew about the adblocker (which I have on my Firefox at laptop but not on the phone.
So if I now know this, I can let Your videos run on silent and double-speed on my phone and then watch them in peace with no interruption after.
Another (german) YTer just mentioned the Adblocker...😢
But a funny thing: I saw You in this video and my first thought was "What a nice pair of trouthers! And what a nice colour-combination"
So, mission acomplished for me😅. Props to Your kids/son.
It was a bit to loud in the background for me to be able to follow in the last part, I get distracted so easily (the ADHD-part🙄), but I guess that was an unplanned circumstance.
What made the dog so busy in the beginning? Before the people came?
With socks some tips, maybe they are useful to You:
1)Bamboo-fabric feels softer then cotton but is also a good breathable nature-fibre, the socks feel light and soft
2) there are socks that are called "diabetes-friendly". I don't have Diabetes, but like those socks as they aren't that narrow on the end/ankle/leg.
3) I have a 42, which is mostly the biggest womans size, so socks are normally offered in 36-40 and 38-42. But I often find it more comfortable to buy mens smallest size to give my toes more freedom.
There are funny, colourful socks from companys like "Happy socks" that are offered for men and woman with same motives. They are a bit expensive, but You can get them at sale often at shops or in mixed packages.
But mostly I wear simply black socks so I don't care if they are labled for men.
I think if you skip after 30 seconds it counts as a paid ad. I appreciate it! And thanks for the sock tips. Sorry about the dog, he just wouldn't settle! I usually try to edit out his disturbances but sometimes I'm not as successful.
Finding out why your amount is going down? Are you too controversial for TH-cam?
I have no idea, but I enjoy making content and connecting so I'll keep at it. 😊
@@i.am.mindblind We enjoy it!