Note For Anyone Writing About Me

I got blogger working again using a different proxy. It'd still be nice if people liked my Facebook, but you don't need to look at it to get posts anymore.
For anyone who wants to write about me
I am an Autistic person. I am not a person with autism. Don't call me one.
My name is Alyssa, I'm a triple major in mathematics, mechanical engineering, and Chinese. I'm currently studying abroad in Tianjin. I have an About. I'm Autistic. I don't like Autism Speaks. I'm Disabled, not differently abled, and I am an Autistic activist. Self-advocate is true, but incomplete.

Don't Call Me a Person With Autism.

Seriously, don't. I also do not "have autism," nor am I "living with autism," "an adult living on the autism spectrum," or any other construction of that type outside obvious, labeled parody or satire. If you want to do so in such a parody, ask permission first. I am Autistic, I am an Autistic person, I am an Autistic adult, you see the pattern?
If someone else wants you to call them a person with autism, do it. I don't want you to call me that, so don't. It's really that simple, though if you want all the stuff I've written about it, have at.

A 15th Explanation
Language for Perspectives on Disability
Nothing So Passive
I Don't See You As Autistic.
Who Was That For?
Responding to Person-First Crusaders
Laughing About Language
A Person With
Autism Parents and People With Autism
Seriously Guys? (PFL)
My Take on Person-First Language

Along a similar line, I am not differently-abled or any variation thereof, and telling me that I don't need to label myself is both pointless and a reveal of how uncomfortable you are with my choice to make Autistic part of my identity. (Labels are tools. Nothing more, nothing less.)
Person with neurodiversity is just silly.
Yes, that is fifteen posts of mine that come from people who don't like Autistic, Neurodivergent, or Disabled identity. If you think you've got something new, feel free to be the inspiration for the sixteenth.

Sir Alana and Lady Knight Keladry isn't exactly about language, but I think it's on topic. So have that too. I'm not counting it as part of the total.

And if you really want to read more, here's some stuff other people I know have said.
I don't have autism. I am autistic. -Radical Neurodivergence Speaking
Dear Autism Parents- Just Stimming
The Significance of Semantics: Person-First Language: Why It Matters-Autistic Hoya
Identity and Hypocrisy: A Second Argument Against Person-First Language-Autistic Hoya
"People First - Create an Environment of Respect"-Autistic Hoya
I am Autistic; Amy Sequenzia 

Here's bendingatthewillow's guide to referring to individuals on the autism spectrum, you should totally look at it. It has a very similar overall message- respect what individuals want to be called, as a community the one I'm in is an Autistic community.

18 comments:

  1. Wow I love this blog! As doctoral student in clinical psychology, I am looking for young, autistic adult volunteers ages 18-25 to participate in my confidential dissertation study. This study will include interviews that are conducted either in-person, over the telephone, or via internet-based communication (i.e. email exchanges or “chatting”). The purpose of the interviews is to elicit your opinions regarding autism interventions. Would you be interested? Please contact me at aklein@wi.edu for more information. Thanks!

    Alex Klein, MA
    The Wright Institute
    aklein@wi.edu

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    1. Sure! Want me to share this around as well-? I know where to find plenty of autistic young adults!

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  2. Thanks for your participation and help! Please do share around as much as you want - thanks!

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  3. I have only just found your page, and have only just stared reading through these, so I don't want to seem rude if I have missed something to ask this question.
    What is it that you don't like exactly? It is the words used in that sentence? Perhaps the idea of a label being placed on a person because they are 'different'? Is there another matter altogether that I have missed?!
    My point to ask is, I 'AM' Autistic. And I prefer to use the term 'am' because I was born like this, this is who I 'am', and who I will always be! Rather than something I 'have' - as if I have caught it like a disease, 'got' - like I just got it yesterday, or 'with' - as though I was just with anxiety that medication and therapy could cure me from.
    On the other side when I was diagnosed by Tony Attwood, I was 15, and struggling with reason to live because I was so different and no one accepted me. But the worst part was no one understood me! My Mother was the only one who really had that deep connection with me to keep me going.
    So When I found out what was 'wrong' with me, yes, I was labelled, and it proved that I was different, but now I knew WHY I was different and that it wasn't my fault for the bullying and abuse. It was the lack of knowledge (the kid's ignorance) and lack of respect (bad manners) from those kids for the way they treated me that made me feel so terribly isolated and hated. (Even though that's taken years of psychotherapy to see that now)
    Sorry to write so much, but were my views similar or way of, or did you have something else that was bothering you?
    Thank you for sharing! ^_^

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    1. Mostly what bothers me is people who tell me I can't BE autistic, I have to "have" autism. If it weren't for them, I wouldn't have written so much on the topic. As far as my logic behind it, it kind of comes down to "So, if I have autism, you mean I have my brain/my neurology? The part of me that basically runs everything is something I only have? That no maketh sense."

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  4. lol Well really they are the ones making no sense. If it was not for us 'having' our brains (giggles) they would never know any different.
    It is because of the way we are made and how our brain works that makes them notice anything in the first place.
    I always thought to myself we were smarter than the majority. They just think they can 'over-power' us with numbers. hehehe :-þ
    You are Beautiful, Alyssa! Love your writing.

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  5. i love what u say you say things i feel but cant get out verblly i do write alot but you really speak for us thanks .,people can be so rude an ingorent at times

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    1. <3 Lyric Notes
      Keep writing, always keep writing. Your voice is valuable.
      And I'm glad to hear you like what I write.

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  6. I think in a nutshell, that if you are a person with Autism, it's conceivable that you can also be a person without Autism. The Autism can be taken away with no harm to your personhood. Which is of course a thing that a lot of (curebie) people are desperate to believe. Just a thought.

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    1. And yet another reason that I refuse to be called a person "with autism" since I know full well that taking away the autism would change who I am completely. It's a thought I've had. I don't think I've dedicated a whole post to it yet, though "Autism Parents and People With Autism" might touch on it? I don't remember all the things I wrote anymore because I write all the things.

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  7. I came across your blog today and I can not tell you how thankful I am. I am a single grandma who has recently taken custody of my 3 year old grandson. Since taking custody he has been diagnosed with autism so this is all new to me. I am doing every thing I can to learn about this and right from the beginning I chose to not let it scare me or look at it as some horrible monster. In fact I have chosen to embrace it and I find it though difficult quite magical and it has taught me so many good things already. One thing I have been struggling with is whether to say he is Autistic or he has autism and this summed it up for me. You are so right it is not a disease, it not something you caught it is something you were born with that has helped make you in to the wonderful young person you seem to be. I have a page for my grandson on FB where I log this journey we are taking in hopes of educating others as we educate ourselves. I would love to share a link to your blog I think you have amazing things to say that people need to hear.

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  8. Hello,

    In the last few years I have read a lot of well-written material (many of which you've referenced above) about identity first language. And like most people, I am also quite familiar with the philosophy behind person-first language and its usage as well. I think it's extremely important to respect the way an individual wishes to be addressed...and that if one isn't sure which would be best, if possible they should ask. Depending upon the context, I may use "autistic" or "person with autism" in writing or in conversation to defer to the person's preferred method.

    However, your comment that you are not "an adult (living) on the autism spectrum" raised a question for me.
    For reasons too long to describe now due to being pressed for time, in the absence of a stated or implied preference, I strongly prefer to use what I deem "neutral" language the majority of the time rather than person or identity first. I have found "on the spectrum" to be a safe compromise between the two, and typically refer to myself and my children as being "on the spectrum," and also use that term when discussing ASD generally (not a specified person). But your comment now has me wondering if some individuals may not see the term as "neutral" and may indeed be offended by its usage.

    In your opinion, what is a respectful, non-person first, non-identity first way to reference autistics and/or people with autism? If "on the spectrum" is not neutral, than would it be better to say, "people who have received an ASD diagnosis?" I realize that might be a lot wordier than "autistic" which is only one word, or "person with autism" or "on the spectrum," both of which have three words. But I care less about how flowery the words sound than I do about trying to find a way to respect people's feelings while still maintaining a sense of personal integrity. Any thoughts? Thanks! Morenike

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    1. There is no neutral language. There are people who will not care which you use, and I think that in the lack of actual neutral language, referring to groups is something where you're going to have to either think about intended audience and their likely preference or go for your personal preference. Adult living on the autism spectrum is even more person first than person with autism! There's three words in between person and autism now, and four for your next idea! Those are even more euphemistically scared of the words autism and autistic, and putting the word disorder in there is anything but neutral.
      There is no neutral. There just isn't. Looking for one is just going to bring you things that are even more extremely person first and more euphemistic. Which means that the identity first people will hate them more.

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    2. You can call yourself whatever you want, bottom line. It just won't be neutral.

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  9. Thanks for your reply. Just to clarify, I only stated "an adult living on the autism spectrum" as a quote from your post. I don't use "living on the spectrum" I say, "I'm on the spectrum," or "I'm on the autism spectrum," with no stated or implied "living" in my words.

    I am fully aware that how I choose to self-identify, or how anyone chooses to self-identify is going to potentially dissatisfy others, as they may have another way that they think is a "better" way than what I've chosen or what someone else has chose. I am more than comfortable with that...no one has the right to define for me how I view myself and what I will call myself, and they are fine to dislike it; they just need to accept/tolerate/respect it. :)

    My question was more about a neutral manner to reference OTHERS in the absence of any information about preference (using all caps here to emphasize, not to yell, as I don't have access to italics right now).

    There are many instances when one may be discussing autism not solely from a personal perspective, or may be referencing a group of people and not just oneself. I can call myself whatever I'd like, but that doesn't mean other people want to be called what I call myself, or what you call yourself, or what Morgan Smith and Taylor Doe call themselves.

    In all situations, it is not possible to query an individual and/or group to learn their preferences beforehand. And yes, one can try to "guess" and use the terminology that the listener(s) may prefer, but assumptions can be incorrect. After all, what does an Autistic "look like?" What does a "person with autism" look like?

    It's a little disheartening to learn that people may perceive attempts to use neutral language as offensive, but I'm glad that you brought it up. I am a part of a number of communities far more stigmatized and in some cases far more marginalized than the autistic and autism communities and thus identify strongly with the critical need for communities to self-identify. I have also seen that terms have been developed that have been deemed "safe" for people to use whether it not they are a part of those groups.

    Autism is probably the most benign of all the diagnoses in our home, so there is no euphemism in my choice of words. I don't deny that it is pervasive in society (hence the widespread messaging that surrounds discussions about autism), but to automatically assume that it is at play is a biased generalization.

    It matters less how many words are or are not between autism and an individual than the intent of the words. People who used the term "autistic" during the refrigerator mother era, for example, certainly did not use it for the purposes that it is now used by autistics today. Same word, different purpose. "Chicano," "queer," "black," and many other terms are other examples.

    I really appreciate the opportunity to dialogue with you and thank you for sharing your perspective on this. I hope my manner of communicating doesn't come off as antagonistic because that is not my intention.

    There are so many layers to all of this, and no easy answers! I enjoy reading your blog and I thank you for taking the time to reply while you are out of town.

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  10. I think the only reason I'm still calling myself "on the autism spectrum" is because I am literally worried that people will not understand that NonVerbal Learning Disability is an autistic disorder but is not what someone might call "real autism" - and that leaves me confused and scared that if I say "I am autistic" I will be discriminated against without thought,

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  11. Lol, the way you communicate, picky and all, sounds just like me. Really love your blog. Chemistry BA, Physics MA here. Published articles in comp. sci. journals. I can nitpick all to hell, especially when I'm obsessing--especially my own crap. Oh, and did I say that my brain can go in five different directions all at the same time? Idk what kind of thing that is--creative mode, I think, obsessing about gathering as much info as possible and using flow of consciousness or whatever else I happen to think of. It's like the obsession can switch tracks as I need it. Kind of cool to be able to use an obsession to provide energy, but it has its downside if I talk about an obsession in a light social group setting like a cocktail party or dance party. When people ask open-ended questions related to my obsession, I have to be very careful to plug my pie-hole pretty quickly. Maybe say one or two things and turn the convo back over to them.

    Oh, I'm a polymath, guess you can't tell, lol.

    Can anyone else relate to your obsession switching tracks with your current thought and pursuing multiple tracks?

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  12. Loving this, I feel the same way. 'A person with autism' implies that the autistic bit could be taken away and leave a nice normal person underneath. But it can't, its not a separate bolt-on part. If I wasn't autistic I wouldn't be me. Its an integral part of everything I am and I wouldn't have it any other way.

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I reserve the right to delete for personal attacks, derailing, dangerous comparisons, bigotry, and generally not wanting my blog to be a platform for certain things. As long as we stay within those ranges, discussion is AWESOME.