Autism, Language, & Ableism
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- Опубліковано 16 кві 2024
- Please remember these are only from my experience and perspective. I am not attempting to speak for anyone else, except for those who have been under the thumb of depression in a similar way and have a hard time asking for help. I just ask that we all please try to remember that we are here to help others, not bully them or yell at them or accuse them of being a bad person because they disagree.
Wanted to add a little footnote, based on some of the conversation around the topic of this video.
Learning to be an "autistic person" has been met with many challenges. I spoke in this video about emotional challenges, but social ones are obviously present as well. One of the social challenges has been getting neurotypical people around you to accept or understand what you're going through. A lot of the negative attitudes I have experienced myself personally, as well having seen others experience in response to their diagnosis/discovery, is a lot of "so what about that?" People don't inherently understand why it is important to know these things about yourself. Instead of acknowledging your struggle, they often shift to "ok, then being Autistic must not be that bad/must be more normal than I thought" if they don't simply write it off as anxiety or being sensitive/needing attention from the very beginning, like some are prone to do. I haven't enjoyed talking about my many periods of depression or my suicidal periods in life, but it has felt necessary in order to fully communicate the experience to those outside of it.
Autism is not the thing solely responsible for the anxiety and ultimately depression experienced in people like myself, but it is a huge, dominating factor in the circumstances that create these unpleasant experiences. Society deserves plenty of the credit of course, and needs change, but I find it dangerously idealistic for people to focus solely on that as the point of advocacy. I understand not wanting to make others feel targeted in an ableist way, but to take that to the extreme of neglecting the "disorder" aspect is an injustice to how many people might take their own life while the rest of us wait for the world to change. Hopefully it will one day, many of us are trying in our own ways to contribute to that. One of the ways I, personally, would like to see change is for people to understand why Autism can be so challenging and the suffering that can result.
People concluding that autism "is not that bad/must be more normal than I thought" is exactly the point of advocacy. Autism is not bad at all. The problems we have are not autism itself. This is precisely what we need to communicate. Autism is a good thing. The problems that autistic people have in society need to be remedied. The way you're messaging might encourage people to pathologize autism itself and to infantilize autistic people
How? By pointing out that some people on the spectrum are susceptible to experiencing high degrees of depression and anxiety? And that pretending that this doesn't exist is harmful? I have clearly stated in every video I have made that I am speaking my experience and I am not projecting onto anyone else. As I will continue to reiterate, again and again - the message is to STOP telling other people how to think and feel about their experience. If talking about the harsh realities of neurodivergence is offensive to some, then so be it. I know firsthand how being told what to feel about your own experience may prevent someone from getting the help that might save their life.@@livenotbylies
Also, in response to your first statement, people who don't want to hear about it or think about it writing it off immediately because someone like me masks well enough is NOT at all the point of advocacy. I'm pretty sure that's not what you meant, but it seems to be the way you read my comment, so this needs clarification. The world accepting autism is, of course, the point. Ignorant people writing it off is not acceptance.
@@magicckmike I only suggest that you separate the problems you have from autism itself. I definitely want people to understand the challenges we face, but I also want people to understand that those challenges are not intrinsic to autism. They are the effects of how society treats us, which can be changed
In the comment you are replying to, I myself stated they are not intrinsic to autism, and have expressed the uniqueness of my own situation time and time again in my videos... but they are not separate either. If you acknowledge the challenges we may face, then you can't turn a blind eye to the consequences, just because some people out there won't listen and want to conflate the two and make autism into a "disease". Going 180 degrees in the other direction is perhaps equally as harmful.
You ask me to separate my problematic experiences from autism, and yet you have no idea about the depths of struggles with social behavior, anxiety, loneliness, etc that I personally and others like me may have experienced as a direct result of autistic traits. Is society supposed to just stop having loud events, crowded rooms, and time-sensitive demanding responsibilities, that can quickly fluster and upset someone with these kinds of sensory sensitivities? It's fine if you don't care about these things, but I do. I wish I could feel comfortable in a grocery store. I wish I could go to parties, or go dancing at a club, but those experiences are deeply uncomfortable for me. I feel alone in life and struggle to find a partner because I don't feel comfortable in the vast majority of social settings where I would have a good chance to meet one. Autism is not to blame for these things, but neither can we just pretend it is not the reason. We talk about changing society, but how can we change typical human experiences? What actual legitimate solutions have people ever suggested to make the world a place where autistic people can suddenly fit in better? Is social interaction itself not an inherent function of most of our lives? Blame is an emotional thing. This is an observation of the struggles of my reality. I try my best at all times to acknowledge those who don't share this experience, and all I have ever asked for is the exact same in return.
There is a large narrative around identity and acceptance that people with autism are usually just not "those kind of people" but that's incredibly ignorant. We want to be accepted for our differences, and yet within our own community we shun each others perspectives and experiences because some people are afraid that they are working against progress, but if they are true, then that can't be the case.@@livenotbylies
I am late self-discovered "AuDHD," and i appreciate the descriptive expression "High Masking Autism." What may appear from an outside perspective as "high functioning" feels entirely different from inside the multiple meticulously manicured masks of trying to blend into various settings and keep our differences (and struggles) hidden. This combination of ADHD and Autism presents an internal conflict, as the paradoxical traits and tendencies clash with each other. To me, it feels like I am battling my own brain at times. People see me as intelligent, articulate, and almost normal, yet "there's something not quite right about that one."
I find language discussions fascinating!
🤓 i suppose "language" is one of my special interests. 😉
The language structures that people use will vary from culture to culture across the planet. English is a strange "mutt" with inside-out grammar, as compared to other languages I've learned. The more I contemplate differences in sentence structure, the more i recognize that my mind doesn't gravitate toward the common Subject, Verb, Object structure of English language, but it begins in a very scrambled formation that often starts with the Object, and then i have to rearrange my thoughts into English-structured sentences -- put the Verb in front of the Object, and put the Subject in front of the Verb, along with placing adjectives in front of nouns instead of after (French, Spanish, American Sign Language, etc). Yet, the language I learned first is English! 🤔 or rather, "English is my first language."
See what I mean? [Object + Description, Verb, Subject] versus [Subject, Verb, Description + Object].
Even with all that being said, I'm more likely to describe myself as "I'm Autistic" -- just like I'd describe myself as "I'm left-handed," instead of "a left-handed person" or "a person with left-handedness." Both of these neurological divergences are part of my internal programming.
Thanks for the thoughtful videos! I look forward to seeing more.
❤️🩹▶️🤓
Thank you for the response! I appreciate your view on Autistic language very much and I also enjoyed the little deep dive into your language fascination. Your initial statement about feeling like you are "battling your own brain" is a lot of the same energy I'm trying to share with this story. Thank you for the comment and the support.
I am a high functioning high masking autistic woman with a late diagnosis. I am still unpacking it.
I have suffered from anxiety since I can remember.
I have went through some periods of depression
I was diagnosed with PTSD 20 yrs ago.
I have had an eating disorder
I have had thoughts of self deletion.
I have had periods where I could not function, lost jobs over it.
I have lived through all of these things and yet I do not think autism is a disorder. I say this because I separate autism from the comorbidities that go along with it. Not all autistic people have these struggles, some of us have different struggles. Some of us have intellectual deficits. Some of us have seizures. Some of us have autoimmune disease. Some of us have schizophrenia. All of these conditions are comorbidities that go along with autism. And this is why I hesitate to call my hard wiring disordered. I like myself. I would not change who I am. I do not feel my basic humanity is a disorder. And I think that is what the pushback you are getting is, you are telling people that their humanity is disordered.
I get why you feel the way you do. But I would challenge you to what your life could be if society were to accept you the way you are. If people accommodated you and the way you communicate. I think most of the things we could do to accommodate ourselves would benefit neurotypical people. The noise and light pollution, the workplace/life balance issues we have, all of these things harm neurotypicals too, they just have a larger impact on us. Our threshold is lower. Humans did not evolve to live in the world we inhabit. The sensory impacts alone harm mental health of many people. Institutions are not good for human flourishing. I think our world is really disordered for all humans, we are just the proverbial canary in the coalmine.
I think that the way we categorize ASD is really misleading and harmful to all autistic people. If we labeled people with their comorbdities it would give others a better idea of how to accommodate us, and that is the entire reason we label ourselves at all, for accommodation. Parents of high needs kids are very upset that people with ASD 1 are out there with the same diagnosis as their children. And I can understand that, because everyone is conflating autism with our comorbidities. Of course when a parent sees a scholar like me claiming to be autistic they are going to be very angry when they wonder if their kid will ever be verbal at all. We are not the same. We have different comorbities.
At the end of the day autism is describing our different neurology. Our neurology isn't necessarily disordered. It just has a higher propensity to have comorbidities, such as anxiety, intellectual disability, and seizures. If you've met one person with autism you've met just that one person. And that is because it is a different type of wiring. Our brains works differently. In some ways our brains can be superior.
You are helping a lot by the way you are describing things. My Mom was no doubt an Aspie and she did commit suicide. And, she was pushed by others to do it. And, there was nothing I could do to stop her from doing it.
Thank you for sharing about your mom. There are no words to express how sorry I am that this happened. I hope with all my heart that autism can be better understood and supported, so that maybe one day all different kinds of people will be able to seek the support they need to help enrich their lives. I'm so sorry for your loss and I'm grateful that you were able to talk about it here.
hi Mike i just found your channel -- it's very good 👍🏼 and thank you 🌸
why do you spose it costs so much money to get a diagnosis?
adhd, depression, anxiety, etc diagnoses don't cost money (other than the cost of a session, which is often on a sliding scale).
so many of us can't possibly afford that validation, and imposter-syndrome-limbo sucks.
also, thank you for putting 'disorder' into clear perspective for us. i personally was trying to understand that! 'i don't think it's a disorder, there's nothing wrong with us' and 'it's society that's disordered in the lack of acceptance' seem to be true to a point... but still didn't hit right.
all of the decades of angst pervading our lives and making us miserable and (most) others don't feel that way? yup that's a disorder-- thank you for giving me this perspective 🌸
Disorder is a complicated term and I think people have conflated it with "disease" too much in the past. I try my best to understand where others are coming from when I make these videos and reply to comments. I don't want anyone to feel judged or put in a box or misheard, but just want to be understood as well and to give a voice to people who have their own type of silent suffering that might be suppressed further by insecurities and confusion arising from people rejecting the notion of a "disorder." I want depressed and suicidal individuals to be heard and helped, not told why they feel the way they do or why they are wrong about it.
The first part is a complicated subject. One part that has to be considered is the complicated dialogue around autism and the changing literature - I think there are far fewer professionals qualified to formally diagnose it than many of these other things. Then, in the case of something like ADHD, there are widely-accepted pharmaceutical treatment options, whereas for autism there is no medicine to address anything that an autistic person experiences, unless they have some type of comorbidity like adhd, depression, etc. Any psychiatrist can and likely will prescribe antidepressants if they are seeing someone who describes a sufficient degree of depression or anxiety in their daily life. Many of them would likely confess to not understanding autism well enough to provide a formal assessment, as it is a subset of the population that is not their specialty. This is where I think societal stigma around autism specifically comes in, because major depressive disorder, adhd, etc. are all subsets of the population experiencing a potentially disordered pattern of living and needing support. I think autism being a "specialty" is a scapegoat for some professionals to not learn more about it, and to not have to take a stance on a somewhat controversial subject. Just a theory of mine, but it seems to hold true in this particular discussion.
Add in the fact that there are quite possibly still professionals that take a specific stance against the modern understanding of autism, in the same way that some people in the world reject it because they don't understand. Medicine and psychology are full of dissent about just about every topic you could think. If there were a more agreed upon view of autism, I think it would be a lot more accessible to get professional assessment and diagnosis.
@@magicckmike i think you are correct in how the professionals don't have a hold on it (i have a BS in psychology and NO mention was made) and some of them don't care to...
but ooh ooh 'there is no medicine for autism'--
i think that's an important part of it!
what can they sell us? There is no medicine for autism, and furthermore, if it explains or even pushes out some of the previous diagnoses (omg BPD, schizoid, etc) we've had, it takes away from big Pharma, not just doesn't give them more money. It takes it away. i personally have stopped taking 'my' meds out of concern they are doing more harm than good. me. personally. i don't recommend that for others but what if lots of us did?
I know I sound sort of cliché not to mention paranoid with the big pharmacy stuff, but really I mean I think that sentence goes a long way... and that 'follow the money' sometimes really makes sense
enjoyed your video i have Autism as well just joined your channel
I'm too lazy right now to write an essay but some thoughts came to me when I watched your video. If you were an Alien and you went back to your home planet, would that culture be a suicidal death cult on the verge of extinction? Or would that culture actually be centered around a whole different structure that made the alien inhabitants thrive?
Another thought came to me, would anyone consider a person being bullied a disordered person suffering with "Bullying disorder"? Or is it perhaps the culture, where bullying is part of the social fabric, that is causing the bullied person to suffer? It's perhaps not the best analogy but I feel it has enough similarities to what you're addressing in the video as I can feel your uncertainty to see and accept yourself as different as you're still probably wish you would/could assimilate into the culture of the planet you were dropped without a manual.
I find that most "normal" earthlings have no idea what they are doing or what's going on but they assume they do. But as soon as you scratch the surface they start to panic, because they do not want to be "found out". The whole culture is built on appearance and manipulation and it often seems to get worse or perhaps it's just me who is becoming more aware. But I too feel like you, but I've come to accept that we are just different species or perhaps entities might be a better descriptor.
I do believe many of the reasons you feel depressed and anxious are because you are more aware and have a higher sense-ability and have to endure attacks on those senses on a daily basis.
'It is no measure of health to be well adjusted to a profoundly sick society.' - Jiddu Krishnamurti
Keep your head up!
I respect where you are coming from and I appreciate your kind words. Like I have addressed elsewhere in the comments, I have my own experience and seeing and learning about others has allowed to me to understand some nuances and differences in our lives. There seems to be a sentiment among the responses from those with a particular perspective that I do not accept myself. This is a bit dismissive of the point I am trying to make in these videos. It is clear that we have had different experiences in life and that we perhaps want different things out of life. Someone else's happiness might also be the source of another person's pain. Thank you for the thoughtful message and I hope that the video has at least provided some food for thought about how these experiences aren't all the same for everyone.
I agree with your line of thought. But I would also say that there are many comorbidities that happen with autism. People with intellectual deficits, people with seizures, just to name two. I don't think it is fair to disappear all of our struggles behind the idea that society sucks and we are just sensitive to it. That being said I DO think that neurotypicals would benefit from a world that was more accommodating to autistic folks. We've got to get over the idea that being sensitive means you are a snowflake weakling. Accommodating people would mean less light pollution, less noise pollution, more time to accomplish tasks, better work/life balance. Everyone wins.
However somebody wants to refer to themself is the correct way. If you are a person with autism, that’s what you are.
I am autistic. I’m late diagnosed in my 50s. Obviously, the autistic experience colored everything in my life, and in many ways, negatively.
So why am I not a “person with autism”? Because it affects every single part of my life, and it isn’t going away. It is how my brain works, and my brain defines who I am. There is no time when it is not impacting who I am, and it always will. For me, saying “person with autism” has an implication that there is a person independent of that autism. There is not.
Regarding the disorder language, it’s far more complicated than “it is” or “it isn’t” a disorder. What I question is whether you are conflating disorders. There is no reason to believe that an autistic person who is raised in a supportive social environment will have depression, anxiety, etc, but an autistic person with no support in a neurotypical world absolutely will. Is the autism the disorder or is the world just screwed up? I think it’s the latter. But that does not mean that people are not struggling due being autistic.
However, that doesn’t mean that, even in the most supportive environments, there aren’t issues (disorders, comorbidities, etc) that raise to the level of “disorder”. That part of the conversation can’t be left out, but it shouldn’t be synonymous with autism. Depression is its own thing, whether you have autism or not, and, if anything, conflating the two conditions can make it harder for autistic people to get support. And, of course, autism can affect things like ability to communicate or control one’s own body. Whatever language gets chosen, we can’t forget those struggles.
Your journey has been painful, and you need to synthesize it however you can to bring yourself peace. Being a person with undiagnosed autism makes every challenge harder and, to kick you while you are down, we give ourselves far less grace than a NT would because we perceive the autism but don’t understand i, so we blame ourselves t. I hope you find your peace.
Thank you for your thoughtful response. I appreciate your perspective very much.
One of the most challenging things I have found about the experience of discovery has been getting others to understand not just the facts but the emotions as well, how life-changing and sometimes life-saving discovery and education can be. For those reasons, I feel like its incredibly important to share this perspective of why it is labeled a "disorder" especially to the NT world, and the fact that there are people out there fighting against that notion, to me, seems like a dangerous point of misinformation. Anxiety and depression are of course not synonymous with autism, but they are experienced in such high degree that the comorbidity cannot be disregarded as being a separate experience.
Following up because I have read your comment multiple times in the last few days. I really appreciate having your perspective to mull over and weigh against my own and I just wanted to say thank you again for providing a comprehensive and mature discourse on the subject. I value these important points you have made about conflating disorders and society and they will help me better engage in this kind of dialogue.
@@magicckmike there’s no question it’s not a cut and dry topic. It is far more complex than “autism is a disorder and disability” or “autism is just thinking differently”. Even if it was the latter, that does not negate the very real trauma people have had as a result of being neurodivergent in a world not built for us. It hurts!
As I think on this topic, my mind goes often to those of us who are fully non-verbal, who have severe learning delays, who suffer intensely from sensory issues, or have similar severe problems. I have no idea what percentage of the autistic population that is, but whatever that number is, the rest of us can’t make autism something that doesn’t include them just because we have a louder voice.
I want the neurotypical world to not pathologize EVERYTHING about autism without eliminating the support for everyone who needs it. That would require the NT world to think in shades of gray. I’m not sure they are up to the challenge.
I am very sorry that you have suffered. I know it can be hard to separate your suffering from who you are. And not to separate from yourself when you are suffering. This is very important for your mental health, though. I will pray that you find freedom from depression and anxiety. But autistic is what you are. And it is important not to reject what you are. You need to love what you are. The difficulty of being autistic in a neurotypical world is real. But it does not mean that depression and anxiety cannot be defeated. Those things are not you and you should seek your freedom. Autism is who you are. You will always be autistic. Which is beautiful and cool. It is well ordered - not disordered. You have a hyper connected brain! This is not a conversation about words and preferences. This is about self love and acceptance. Please consider embracing yourself as an autistic person and rejecting your anxiety and depression. You can escape them, but you must be clear that they are not part of you. May God bless you
I appreciate your kind words, but if you are hearing that i am not embracing who I am, then the message has either been miscommunicated or misheard. The point of the video is to NOT tell other people what they are/are not.
@@magicckmike but you are autistic. Trying to separate that from yourself is not healthy, or true. Autism is part of you. And your anxiety and depression are not essential to you or to autism. They are not you. These are just facts. I love you too much to lie to you. I cannot feed into identity confusion or self rejection.