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To those who are on the autism spectrum, what's something you wish more people knew/understood?
Similar to other discussions we've had in the past, I think this topic will be most beneficial if we elevate and consider the voices of people on the spectrum who choose to answer. Please consider how a thread full of neurotypical voices on this topic can drown out or be unwelcoming to the people this question is aimed at.
That no two of us are alike. If you know one autistic person, you know one autistic person. While me and my fiancee (who is also autistic) have certain personality traits in common, we are about as different from each other as any other couple.
Autism has multiple sets of symptoms, of which only a few may manifest in a given person. The diagnosis is given based on the person having multiple symptoms from that set, but people rarely have all of them. That said, Ill generalize to my and my fiancee's experience from here on out because that's what I know.
It does exists in adults. Pretty much everything you hear about autism is how it affects young kids. One rarely hears autism in connection to anything above middle school. You cant find any autism resources for anyone older than 14 or so. If you want to see a therapist, you have to choose between one that has experience with autism or one that has experience working with adults. As an autistic adult, its a bit disheartening. We do exitst, we do still need help, but no one seems to care after your a teen.
Parents of autistic children are great, but tend to overpower our own voices.
Look, parents, I know (most) of you are just trying to help, and I really appreciate my own parents for everything they have done. I wouldn't be here anymore if my parents had not been who they were. But we also want to have our own voice.
\begin{rant}
What really irks me is how the conversation about autism seems to shift to how hard it is on the parents. Parents have a hard job, yes, but sometimes its like the hardship of the person isn't even considered, because how awful is it that the parents be beset upon by that little beast!
\end{rant}
That said, Id like to say, @suspended, Im not at all targeting you in this. This part would have gone in whether you had commented or not. You seem to be trying your best... it just... tiring sometimes that our voices are so often drowned out by those of our caretakers.
Most of us are good at hiding it. I am the exception to this point, actually. I never quite got the hang of 'masking' like my fiancee and other autistics did. It quite possibly had something to do with the fact that I was raised in an isolated environment, and didn't have much social contact through school and the likes.
No matter how good we are at hiding it, though, doing so is exhausting, both physically and mentally. Social interaction in general is exhausting. Sometimes I get home from work at 5 and go straight to bed, getting 14 hours of sleep or so. I wish more people understood that. Its not just that we are bad at social interaction, its not even that we don't like it! (I need a lot of social contact, in fact. I get lonely easily, and that does not help with my anxiety). Its that social interaction is very tiring.
That's all I can think of off the top of my head. It got a bit ranty, but there's a lot of stuff I need to get off my chest.
STAY AWAY FROM AUTISM SPEAKS.
They advocate torture and are just horribly eugenic.
Sorry, needed to say that.
I'm just speaking for myself when I talk about perception. Even if I do speak for others, that's because most of you live in the US of A(sshole politicians) and your country is horrible to anyone who isn't white/cis/het/neurotypical and the country I live in, is somewhat decent about most things.
Also, "autism" isn't a fucking spectrum, nothing is: Stop treating every fucking thing as a spectrum. This implies 2-dimensionality and nothing that naturally occurs in this world is. I understand that it's the terminology (fucking neurotypicals), but it's not a scale going from one end to another. It's more like there is a an ice cream bar where you can't choose and you get a random mix and amount of toppings.
Officially I have been diagnosed with ADD (which still is on your s p e c t r u m), but I'm pretty sure this isn't right. I was diagnosed at a weird time in my life, by psychologists that are specialized in children when I was 18. (I know that a arbitrary age didn't mean I wasn't a child, but that age was extremely weird for me. I was still actively hiding my sexuality and don't even get me started on all the things I have realized now. (I probably will, don't worry.).).
Just so you know, I'm not going to be editing myself for this
postposts in this thread like I normallydowould. Normally I would spend ages setting things into the right order and taking out emotional lashings so it's easier to read. I think it might be a good way to show you how confusing/frustrating the world can be for someone with "autism". I also won't take out swearing, because it's hard for me to express how intense I mean things otherwise.People who are autistic are more likely to be transgender (and even if I don't like doing this: that includes non-binary people (Hi!) (And I don't like saying that because not every non-binary person identifies as trans.).) and transgender people are more likely to be autistic. This is really important: A lot of the time people don't accept or listen to someone who's autistic and says they aren't the gender they were assigned as at birth. This is because we don't see the world in the same way, so it just gets thrown away as: "Oh, you're autistic? You can't determine your own gender." (Outside of people already saying that.)
It is incredibly draining for me to talk and/or think about these things, so I'm going to walk away for a bit, but feel free to ask me anything.
Right: I forgot. STOP TRYING TO FUCKING "CURE" US.
Most importantly: Listen to neurodivergent people.
Some resources (from people who have put more thought in this than I have (and who might be more coherent)):
(I didn't sleep well and I'm exhausted and I can't seem to find more links that are good. I might come back to this list (Or maybe not, it is extremely upsetting and hearing/reading/talking/writing about most of this puts me in a horrible headspace.).)
*Edit: I replaced 'autism' with '"autism"'. And changed a tense.
Edit2: People first.
Edit3: > Just so you know, I'm not going to be editing myself for this
postposts in this thread like I normallydowould.There's a strong tendency towards purism on Tildes, which can be manifested by an aversion to everything human or soft to the touch.
Thank you for this illuminating response. I know it was difficult for you to express, and I appreciate your honesty.
I think this metaphor is particularly insightful — thank you for putting that into words. Other people I know with autism have told me they prefer “spectrum” terminology and “people first” language (“with autism” rather than “autistic”) which is why I used it here. Thank you for providing your own perspective, which I also feel is very valuable. If there’s anything I need to change or anything I should do to be more accommodating in the future, please let me know.
My hope is that neurotypical people can work to better appreciate autism so that your experience is not one exhaustion but comfort and celebration. Your advocacy here helps us take a valuable step in that direction. I know we’re far from where we need to be right now, but I hope it’s at least a slight salve that many of us care and are trying.
I completely agree with using "people first" language, but "autism" isn't something you have. It's something you are, it's something that is (a part of) your identity. (Although, don't feel forced to consider it that.)
I also want to thank you for making this post. Your timing couldn't have been better (for me). I'm currently working really hard to come to terms with who I am and this is tremendously helpful. As speaking (or talking for that matter) is pretty hard for me. One of my "toppings" is that I can't be wrong. (This sounds sorta like I'm always speaking the truth (And I sorta love that implication.), but what I mean is that I have to correct myself.) That also extends to others in a smaller way, but that is something I'm working on (in the sense that I need to be nicer when I do it).
PS.: I love that metaphor. It's not mine, but it's so accurate (or at least, that's what it feels like to me.) I can't remember exactly where I heard it (just that it was recently), but it helped me to understand so much.
I think this is just english's confusion of adjectives. You also say that you are hungry; but that's not who you are, just an attribute that you happen to have.
I've never really understood identity, so I won't speak much to that, but I will say: the point of this sort of language is to avoid reduction. So it's not (to me, at least) the distinction between ‘autistic person’ and ‘person with autism’, but rather the distinction between either of the former two and ‘autist’. The first two express an attribute of a person while the latter reduces a person to that attribute. Similarly calling somebody a ‘construction worker’ is demeaning compared with ‘person who works construction’ because the former reduces somebody to their vocation; or, calling somebody a ‘white’ instead of a ‘white person’ reduces them to their race.
Most obviously, "you don't look autistic" is a stupid remark, since autism isn't a facial deformity, even if that may occasionally happen in autistic people more often.
Autism seems to happen significantly more on guys than girls, albeit this is more of a fun fact than a serious thing.
Autism can wane over time. When I was a toddler, my autism was basically the most intense and debilitating form of it. Today, it's the opposite for me.
Because of this, my parents realized that I was autistic basically immediately. Many autistic people don't have the same development, and don't realize they're autistic until later, usually as adults. (This process could resemble coming out, but that's just me guessing.)
Autism is often lacking in research for things. For example, why people like me can have their autistic traits get less intense over time is a mystery.
Autism, alongside being incredibly varied among autistic people, isn't an insular condition. You can share symptoms with other similarly categorized conditions like ADHD, Tourette's, or it can overlap with entirely mundane things like being shy or awkward. There's no strict boundary between doing something because you're autistic vs just doing it because you did it. (Although, obviously, this doesn’t apply to everything.)
First thing I'd like people to understand: there is no way to conclusively evaluate a person's mental health. Mental health diagnoses are performed by basically filling out a checklist of symptoms, subject to the evaluating physician's discretion. I have been diagnosed with a lot of shit over the years. Some things I think there is no question that I suffer from. Others, I am not so sure (and maybe even I don't even understand what it really means). I was diagnosed with ADHD at 6 years old. But looking back, I feel like it was a cop out, and basically all my "ADHD" behaviors could be better explained by a combination of bipolar disorder, OCD, and Tourette syndrome.
I also want people to understand that I am "autistic" and I don't even really know what it even means. It makes no sense to me. I think "autism" is really just a big bucket filled with a variety of distinct, but very closely related, "syndromes". I don't really like to say I am autistic for this reason. It's clearer to explain to people "i have intrusive thoughts, compulsions, tics, and sensory processing issues".
Also, this is going to get into my own opinion territory, but I actually think way more people have Tourette syndrome, OCD, and sensory processing issues than anybody realizes. Since I have come to better understand my tics and compulsions, it's like I see almost everyone I know engaging in these behaviors, at least from time to time.
Also, I want people to understand that as an "autistic" person, while I personally am happy that there is an effort to humanize those that deal with these problems, at the same time I am worried about more "well adjusted" people drowning out the voices of those whose problems literally take away their voice. Like most of my struggles as an "autistic" person stem from an implied expectation in society that people don't have to deal with the problems I deal with. The problems could be solved, if society were simply more accommodating. But, we can't forget, there are "autistic" people who are literally never able to find a way to communicate with anyone. And when you actually find a way to speak to these people (like, certain holistic therapies are great for getting "severely" autistic people to "come out of their shell", like horseback therapy or even just acting out as if you are a character from a movie they like) you will learn that these people are not happy, that they really do need help, and that it's going to take a lot more than just simply making society more accommodating.
Disclaimer: This is a separate reply, because this one isn't about "autism" per se. It's more of an autistic rant about the word "autism".
I really hate the word "autism", like extremely fucking deeply: "-ism" is a suffix with a extremely negative connotation. I'm not attacking anyone who use(s/d) the word, but please think about that. Also: People don't have "autism", there are people who are autistic. There is a reason that "our" self-advocacy groups generally use the term autistic.
The only "-ism" involved that has anything to do with people who are autistic is "neurotypicalism".
Edit: People first.
I am with you in that I don't like the word "autism", but it's mostly because I don't really think it means anything in particular, and only serves to muddy the conversation. I don't really agree that "-ism" is a suffix with some kind of "extremely negative connotation", though. And while I also agree that, in general, it's quite harmful to assert that any "autistic" person "has a disease", there are definitely people who are said to be "autistic", that most definitely have a serious disability that profoundly affects their ability to live a productive life. Like positivity and empowerment is great, but it's just not going to be enough for some people, and I fear that there is a chance that the pendulum swings too far the other direction and they just wound up getting forgotten about. Again.
You're probably about the suffix (but using it for people who are autistic is just wrong). And you're definitely right about it being a disability (although.. is anything a disability? (I mean in the sense that disabilities are a social construct based on what is "normal"), maybe obstacle is a better word).
I completely agree that we need to make sure that every person has the possibility to live their full life as best as possible.
I am glad you brought this up, because I think "disability" is itself a pretty tricky word, for pretty much the reasons you mention. I guess my thing is really, I know that I wouldn't want to make any kind of drastic changes to how my brain works, but I think that makes me lucky. I just know that there are people who exist that probably do not feel the same way, and even worse, don't even have a way to express that.
The term disability is only as tricky as we make it out to be. The best definition that I've heard,
"A disability ceases to be a disability when it no longer negatively impacts life."
I am not saying autism / being autistic is a disability but there aspects that can be disabling. Personally, I find it worthess to tell people about autism but focus on specifics that anyone can understand.
My problem with this definition is that it lets you get away with never questioning if it’s even necessary that this particular aspect of a person should have to negatively impact their life. A lot of times the “negative impact” is just simply a consequence of never addressing the fact that there are lots of different kinds of people with a variety of different limitations. We could alternatively make society more accommodating for everyone but what we do so often now is try to beat people into the “shape” of the idealized “average” person that doesn’t exist.
I do consider it a word with negative connotation. Cripple my executive function, attention (oh, wait, that's comorbid ADD), and ability to interact fluidly, and for what?
These are the diagnostic criteria for ASD as specified by the DSM 5. Is there anything positive there?
So I don't see anything wrong with the word ‘autism’ (though I do disagree with your assessment of the suffix ‘-ism’ and as such don't see any reason distinguish between ‘autistic’ and ‘autism’ in this respect).
Would regular sessions with a therapist be a good idea? As a presumably neurotypical person therapy seems to mostly be a series of lessons in emotional intelligence. It seems at least to be a place to start.
Therapy can be very (extremely) helpful. But please, (please, please) listen to your child. That is the most important thing you can do for them.
On a slightly related note. Please don't "gender" anyone. Or give them any kind of description based on what they have between their legs. It's honestly kinda gross, especially when you're talking about a child.
I didn't mean to imply that you were doing it on purpose (or even that you were doing it at all).
What I mean is that you as an individual should only see someone as an individual. Not as a collection of their traits. It's fine to describe someone in such a way, but do realize that verbal language is a large part of the way you have an influence on someone.
Again, this isn't directly at you, but I think it's important to always keep reminding people of that.
Seconding this.
As a child I was given a test and the result was Asperger’s. And sure, at the time I was emotionally stunted. But in reality it was simply because I had shitty parents who wouldn’t listen to me or take my feelings seriously. Later we found out that one of them had sociopathy. Shortly after leaving that household, I was able to learn how to properly deal with my emotions.
I’m not saying this to be accusatory, but to illustrate how important it is to listen to children and take what they have to say seriously. And that is regardless of if they may be neurodivergent or not.
I was never diagnosed as a child, but when I was 18 my grandfather's therapist told his children that they suspected that he had Asperger's (because they think/thought (I don't know (but I don't think it is) and I honestly don't care if it is, so I can't be bothered to find out before replying) that it's inheritable). This prompted one of my parents to ask me if I would consider going to a psychologist to find out (as I had my issues at that time). Just before that my closest friend at the time was diagnosed with Asperger's and they told me that they recognized a lot of himself in me (and looking back: we did really share a lot of the same traits), so I agreed. I was diagnosed with ADD, but I don't think that's true. Or not completely, I'm pretty sure that I'm autistic (and self-diagnose as that) and I label myself as such because it helps people understand me (I think, I can't really tell if people understand me (or if what I'm saying is understandable (and who can ever say they truly understand someone?))).
Just.. don't. -.-,
I think that is probably the worst assumption about neurodivergent people.
Intelligence is just a part of neurodiversity. It's just that we are different (everyone is different) than neurotypical people.
Edit: Rephrased/Retracted a statement made out of frustration.
But I think it's important to show how frustrating this can be, so I'm leaving the original statement up. Please realize that I don't blame this on anyone in particular and I didn't mean to offend anyone.
Original message:
I don't want to be rude but I really think this is a horrible and ridiculous thing to write.
You're right. That is frustration coming through. I'll rephrase that.
I’m definitely not the most emotional intelligent myself.