READ THIS FIRST: (17 May 2017)
I wrote this post more than five years ago. So before you write an angry comment or email about it ... This list has been widely circulated as though it is meant to speak for all autistic people and cover all possible situations or contexts (it's not), and as a result, I've gotten a lot of really misplaced hate mail and mocking comments.
Like with anything else, context matters. If you are at an educational event about autism or visiting a website where autistic people take questions from the public, then yes, it is definitely OK to ask questions about what it's like to be autistic. If you personally know an autistic person (or several), and they have told you or otherwise indicated that they are open to talking about their personal experiences with being autistic, then yes, it is definitely OK to ask them questions.
This list is meant to describe common things that strangers, out of context (i.e. when not invited, and when inappropriate), often say to me and many other autistic people right after finding out that we're autistic, and that, because they are said so frequently, can get tiresome and frustrating to hear over and over again even if the person saying it had no bad intent. And yes, there are probably plenty of autistic people out there who might not be bothered or upset by some, many, or all of the statements in this list. It's meant as a response from the many of us who are bothered/upset/frustrated by how frequently we hear these things. It's not about being politically correct or avoiding being offensive ... it's about basic respect, and knowing that some questions are better off not asked, and other questions shouldn't be asked before you've even gotten a chance to know a person. (But they say WE lack social skills.)
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Content/TW: Quotes of things that shouldn't be said. They can be ableist and triggering.
Edit 18 Sep. 2015: I got rid of all binarist pronouns in this post. I also edited a few other sentences.
I wrote this post more than five years ago. So before you write an angry comment or email about it ... This list has been widely circulated as though it is meant to speak for all autistic people and cover all possible situations or contexts (it's not), and as a result, I've gotten a lot of really misplaced hate mail and mocking comments.
Like with anything else, context matters. If you are at an educational event about autism or visiting a website where autistic people take questions from the public, then yes, it is definitely OK to ask questions about what it's like to be autistic. If you personally know an autistic person (or several), and they have told you or otherwise indicated that they are open to talking about their personal experiences with being autistic, then yes, it is definitely OK to ask them questions.
This list is meant to describe common things that strangers, out of context (i.e. when not invited, and when inappropriate), often say to me and many other autistic people right after finding out that we're autistic, and that, because they are said so frequently, can get tiresome and frustrating to hear over and over again even if the person saying it had no bad intent. And yes, there are probably plenty of autistic people out there who might not be bothered or upset by some, many, or all of the statements in this list. It's meant as a response from the many of us who are bothered/upset/frustrated by how frequently we hear these things. It's not about being politically correct or avoiding being offensive ... it's about basic respect, and knowing that some questions are better off not asked, and other questions shouldn't be asked before you've even gotten a chance to know a person. (But they say WE lack social skills.)
***
Content/TW: Quotes of things that shouldn't be said. They can be ableist and triggering.
Edit 18 Sep. 2015: I got rid of all binarist pronouns in this post. I also edited a few other sentences.
Edit 17 Apr. 2012: After receiving a slice of humble pie over the anonymity of the internet for language that was interpreted as cissexist, binarist, and inaccurate, I've revised the language in number 13.
Note: I use identity-first language (i.e. "autistic person") and not the politically correct person-first (i.e. "person with autism").
15 Things You Should Never Say To An Autistic
1. "So is that like being retarded?"
Factually speaking, Autistic people in many cases do not have an intellectual or cognitive disability, and many people with intellectual or cognitive disabilities are not also Autistic. There are some Autistic people who also have an intellectual or cognitive disability. Nevertheless, the word "retarded" is often very hurtful for Autistic people, as it is frequently used as an insult to dehumanize people with developmental and intellectual disabilities. The r-word is often used to express hatred for people with disabilities. Please don't use it.
2. "You should be very proud of yourself. You seem so normal. I couldn't tell that you're Autistic."
While this is rarely said to Autistic people whose disability is very visible, it is very frequently said to Autistic people with much more invisible disability. It's insulting because it suggests that because the person doesn't appear to be disabled or doesn't fit preconceptions of what Autistic people are supposed to sound or act like, that person must therefore not have a disability or be Autistic. It also suggests that "normal" is the standard to which anyone should aspire to appear or act (and that "normalization" should be the ultimate goal of therapies or treatments for autism rather than pragmatic coping skills to navigate a world where Autistics are a minority), and therefore that it's not good to act or speak in ways commonly associated with being Autistic, even if those behaviors don't actually hurt anyone. This is very dismissive of a person's disability and experiences.
3. "You must be very high-functioning."
Many Autistic adults take issue with the "high-functioning" and "low-functioning" labels for a variety of reasons. Some people have received both labels but at different times in their lives, and many Autistics have very uneven skill levels -- some people who might be able to articulate their ideas very well at a conference may be unable to travel alone or cook for themselves, while some people who are unable to communicate with oral speech might be able to live independently. That debate aside, this is also very dismissive of a person's individual experiences with disability. Unless you know someone very, very well, you have no way of knowing what specific adaptive functioning skills or life skills a person has or what their needs and challenges might be, and it's not possible to acquire that information simply by looking at a person.
4. "You're not like my child; you can write a blog post. My child will never be able to write a blog post."
Not everyone who can write a blog post can live independently, tend to their own activities of daily life, get and keep a job, complete higher education, travel alone, communicate with oral speech, or manage their own finances. The ability to write a blog post says absolutely nothing about a person's needs and challenges, and how disability might affect an individual person. There are people like Amy Sequenzia, Larry Bissonnette, Amanda Baggs, Tracy Thresher, Hope Block, Sue Rubin, and Carly Fleischmann, all of whom are non-speaking Autistics or people with autism who have given presentations at conferences, written blog posts, written letters to the editor, published articles in newsletters or journals, and visited legislators. Other people, like Kassiane Sibley and Kathryn Bjørnstad, who are frequently touted as "high-functioning" because of their blogs, do not have consistent adaptive functioning abilities.
5. "I know a kid whose autism is really severe. You don't seem like him."
Every Autistic person is different from every other Autistic person. Among Autistics, there is a huge range in individual abilities, skills, needs, and challenges. It is impossible to know what an Autistic's abilities and skills versus needs and challenges after a brief conversation either in person or in the comments thread of an internet post. What makes Autistic people a group united by a shared diagnosis are the commonalities of all Autistic people. All Autistic people share some of the same core characteristics that define autism -- key differences in neurological functioning, sensory and cognitive processing, and communication abilities that often manifest as disability. Autistic people are Autistic regardless of whether they look, speak, or act like another Autistic person you know or know of.
6. "Can you have sex?"
Yes, Autistic people can have sex. Some get married and have children. Some have Autistic children. Other Autistic people are never taught about sex, for a variety of reasons. Autistic people, like all people with developmental disabilities, are at much higher risk for abuse or victimization -- sexual or otherwise -- than the general population, but that doesn't mean that Autistic people don't know about or can't have sex.
7. "Does that mean you're really good at math/computers/numbers?"
If there's one thing that's sure to offend an Autistic, it's seeing them in terms of common stereotypes about autism. A very small minority of Autistics are also savants. Many Autistics have higher than average measured IQ, and many Autistics have measured IQ that falls right into the median, while still others have an intellectual or cognitive disability. Some Autistics have dyscalculia or similar learning disabilities, and actually find math to be extremely difficult. Other Autistics, including those who might be good at math, simply don't like it. And yes, some Autistics happen to be excellent with math and enjoy working or studying in related fields. There are Autistics who are relatively computer illiterate as well as Autistics who thrive in the IT world and community. Asking if we like math, computers, or numbers because we're Autistic is like asking me if I like/am good at math because I'm Asian.
8. "But you're married/have a job/go to college. You couldn't do that if you were really Autistic."
Yes, it's true that every Autistic isn't going to get married, have a job, or go to college. But plenty of Autistics do get married, have jobs, or go to college. This statement is insulting because it's ableist. (For those who may not regularly read my blog, ableism is like racism, ageism, or sexism, but directed toward people with disabilities.) While not every Autistic person may be able to do all or some of these things, it's very ableist to assume that no Autistic person can or that anyone who can must not be Autistic.
9. "Do you take any medications for that?"
This is a very personal decision. Some Autistic people take medications for various reasons, and some do not take any medications. You wouldn't ask a stranger if they were on medication for anything, so you shouldn't ask an Autistic person whom you don't know very well if they take medications either. This is very rude to ask someone, especially someone whom you do not know well. The only context in which such personal questions are appropriate with strangers or acquaintances might be during a conference or panel presentation where the Autistic speaker is specifically speaking about their experiences.
10. "You have no right to claim to speak for severely Autistic people who can't speak for themselves."
Firstly, any non-speaking Autistics can speak for themselves. People like Amy Sequenzia, Larry Bissonnette, Amanda Baggs, Tracy Thresher, Hope Block, Sue Rubin, and Carly Fleischmann are all non-speaking and they can speak quite capably for themselves. Secondly, while every Autistic person has different abilities and needs, that does not mean that Autistic people who may present as highly verbal or invisibly disabled cannot speak to the commonalities that they have with Autistic people who do not present the same way as themselves. Furthermore, any Autistic person will understand another Autistic person's experiences far better than any non-Autistic person by nature of also being Autistic. That doesn't mean that I should be advocating for your child in their school (unless you ask me to do that, it's not my place), or that I know your child's particular quirks or personality, because unless I actually spend time with your child, I don't and won't. It does mean that I share the way your child experiences the world, and can speak to that.
11. "Can you please not flap/rock/spin/jump in public? It's embarrassing."
Flapping, rocking, spinning, jumping, or other stimming (calming behaviors), in the vast majority of cases, hurts neither the person doing it nor anyone else nearby. There's nothing wrong with stimming, and this statement communicates that the Autistic person should stop acting like themself or stop moving in ways that come naturally and instinctively. It's very offensive, and for some people, could be very triggering (psychologically and emotionally traumatic).
12. "You mean you are a person with autism. You are a person first, not a disability or a disorder label."
Some people on the autism spectrum do prefer to be called people with autism, and if talking to someone who does, you should call them a person with autism. Many of us, however, prefer to be called Autistic or Autistic people, and if you are talking to someone who prefers to be called Autistic, you should also respect their preferences in referring to themself, and call that person Autistic. Everyone has the right to decide how they would like to be described, and you should respect that right.
13. "What's it like to be Autistic?"
Just as it would be improper, rude, and demeaning for someone to ask me what it is like to be Asian, it is improper, rude, and demeaning to ask people belonging to any marginalized group what it is like to be the way that they are. You shouldn't ask someone whom you don't know well what it's like to be Autistic outside the context of a conference or panel presentation about that person's experiences--in which case, more specific questions might actually be better and more effective--and if the person is someone whom you know well, you still should refrain from any variation on this question if the person has made it clear that the topic is an uncomfortable or off-limits one. Besides, every Autistic person's experiences vary so much that it'd be an injustice to all of us for you to ask a question that implies that there's one way to experience being Autistic. While we share certain characteristics and experiences of the world, our life stories and our experiences with people and ableism are vastly different.
14. "Have you ever heard of Temple Grandin? Her books are really amazing!"
The answer is almost always yes. But it gets very tiresome for Autistic people to constantly hear about Temple Grandin day in and day out. There are many prominent Autistic people in diverse fields and known for a variety of accomplishments, and it's very annoying to be constantly compared to the one same person all the time.
15. (Asking a question about the Autistic person to a parent, support person, aide, sibling, or friend who is standing or sitting beside the Autistic person )
Please don't talk about us as if we're not in the room when we're sitting or standing right here. Just don't. The message that that communicates to us is that we don't matter and can't possibly have anything meaningful to communicate.
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Other articles to read:
1) S#!T Ignorant People Say To Autistics by StimNation (This is technically a video. But it has captions and a transcription!)
2) What to say, and not say, to an autistic adult by Kassiane Sibley
3) Things you should never say (or think) when you learn that someone is Autistic… (Introduction to Ableism) by Sonnolenta
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Other articles to read:
1) S#!T Ignorant People Say To Autistics by StimNation (This is technically a video. But it has captions and a transcription!)
2) What to say, and not say, to an autistic adult by Kassiane Sibley
3) Things you should never say (or think) when you learn that someone is Autistic… (Introduction to Ableism) by Sonnolenta